Pediatric oncology nursing research in low- and middle-income countries
fatigue; stress; human; palliative therapy; priority journal; cancer survival; health care personnel; pain; quality of life; posttraumatic stress disorder; risk factor; low income country; middle income country; cancer incidence; nutrition; caregiver; sepsis; treatment response; infant mortality; geographic distribution; malnutrition; high income country; methodology; nursing care; pediatric oncology nursing; caregiver burden; gross national income; Burkitt lymphoma; lifestyle; alternative medicine; caregiver burnout; cytotoxicity; economic status; immune status; Impact of Events Scale; Kaposi sarcoma; nurse training; nursing practice; nursing science; Southeast Asian; Southern Europe; traditional medicine
Cancer and other non-communicable diseases are a growing public health issue now that infectious disease control (e.g., HIV/AIDS, malaria, and tuberculosis) has made great strides across low- and middle-income countries (L&MIC). The large majority (85%) of children and adolescents with cancer reside in L&MIC where children represent up to 50% of a country's population, and resources are severely limited for the comprehensive cancer care these patients require. Nursing care of these patients and families must be based on research performed in country to account for challenges in access to care and limited resources and opportunities for nursing specialization. Examples of these challenges include cancer stigma, poverty, traditional medicine practices, cultural norms and decision-making hierarchies, limited education opportunities, lack of universal healthcare, and poor transportation infrastructure to access tertiary care. This chapter summarizes the 137 articles in five languages from 2008 to 2018 that communicate nursing research findings pertaining to pediatric oncology issues from L&MIC across all six World Health Organization (WHO) regions. Despite little or no funding, nurses in academic and clinical settings are actively exploring care priorities in their settings, most often (but not limited to) addressing parent coping, nurse and nursing care issues including symptom management (pain and fatigue, especially), and children's quality of life. The nursing research evidence presented here will begin to inform personalized and precision health in L&MIC to ensure that care is culturally acceptable and considers the environment, nursing practice, nursing science, family, lifestyle behaviors, and response to disease and treatment of this large patient population.
Challinor J M; Day S W; Afungchwi G M; Alqudimat M R
Pediatric Oncology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/978-3-030-25804-7_15" target="_blank" rel="noreferrer noopener">10.1007/978-3-030-25804-7_15</a>
Palliative care in 9 children with neurodegeneration with brain iron accumulation
article; body mass; bone density; bone strength; botulinum toxin; child; clinical article; contracture; controlled study; densitometry; dystonia; facilitation; female; femur; home care; Hospice and Palliative Care Nursing; human; hypersalivation; iron; ketogenic diet; male; multidisciplinary team; neurodegeneration with brain iron accumulation; pain; palliative therapy; pathologic fracture; prevention; questionnaire; school child; skeleton; spasticity; spine; thorax
Aim: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents. Material and methods: The children were treated at home by a multidisciplinary team. Densitometry was used to evaluate the condition of the skeletal system. Botulinum toxin was injected into the muscles in doses between 22 and 50 units/kg. The quality of palliative care was assessed on the basis of a specially designed questionnaire for parents. Results: The observations were performed on a group of 9 patients with NBIA. On admission, the median age of patients was 9 years (7-14). The average time of palliative home care was 1569 days (34 days-17 years). The median age at death (6 patients) was 11 years (7-15). The botulinum toxin injections gave the following results: reduction of spasticity and dystonia, reduction of spine and chest deformation, relief of pain and suffering, facilitation of rehabilitation and nursing, prevention of permanent contractures, and reduction of excessive salivation. Bone mineral density and bone strength index were reduced. Two patients experienced pathological fracture of the femur. The body mass index at admission varied between 9.8 and 14.9. In 7 cases, introduction of a ketogenic diet resulted in the increase of body mass and height. The ketogenic diet did not worsen the neurological symptoms. The parents positively evaluated the quality of care. Conclusion: Palliative home care is the optimal form of treatment for children with NBIA.
Dangel T; Kmiec T; Januszaniec A; Wazny B
Neurological Sciences
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040054/" target="_blank" rel="noreferrer noopener">10.1007/s10072-019-04099-5</a>
Palliative care in an underserved community: Striving and thriving
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18
article; care behavior; child; child protection; controlled study; Edwards syndrome; family counseling; female; grounded theory; human; intensive care unit; male; pain; palliative therapy; patient education; pediatrics; personnel management; practice guideline; son
The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care.
Szabat M
Nursing inquiry
2020
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<a href="http://doi.org/10.1111/nin.12341" target="_blank" rel="noreferrer noopener">10.1111/nin.12341</a>
Symptoms and Suffering at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions (S756)
adult; central nervous system; child; chromosome; chronic disease; conference abstract; data analysis; dyspnea; female; human; major clinical study; male; medical technology; pain; prospective study; young adult
Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children with cancer and cardiac disease has highlighted significant suffering at end of life (EOL). Children with other life-threatening complex chronic conditions (LT-CCC) comprise a growing proportion of patients, yet little is known about their EOL suffering. Research Objectives: To examine parent perspectives on EOL suffering among children with LT-CCC and factors associated with high child suffering in the final two days of life.
Marcus K; Kao P C; Ma C; Wolfe J; DeCourcey D
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.12.318" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.318</a>
Simulation and skills training for pediatric fellows: Improving confidence in high-stakes care at end of life
child; clinical article; conference abstract; controlled study; female; hematology; human; male; pain; resuscitation; simulation; skill; teaching; terminal care
Background: End-of-life (EOL) care for a child is a high-stakes situation that requires careful planning and practice; there is only one chance to get it right. Additionally, distress is often high in those caring for dying children. Despite the fact that treating patients with life-threatening illnesses necessitates providing EOL care at some point, formal training and skills practice is not a routine part of pediatric subspecialty training. In contrast, resuscitation - another high-stakes situation - is a skill that is nearly always required for staff. Despite the clear need for good care at EOL, it is generally not recognized that there are distinct EOL skills that need deliberate training and practice. Simulation and skills-based training, similar to that used for resuscitation, can provide opportunities to learn and practice skills in a safe, controlled environment to equip the trainee for the real situation. Purpose: The objective of this study was to evaluate whether a half-day simulation and skills-based workshop was feasible, desirable and could improve perceived confidence of specific EOL skills of pediatric subspecialty fellows. Methods: Hematology-oncology, PICU and NICU fellows at a Midwest academic children’s hospital (n=19) in all years of training were invited to participate in a half-day EOL workshop. Pre-intervention anonymous knowledge and confidence surveys were given to fellows at the beginning of the workshop. The educational intervention consisted of a pre-briefing introduction, 2 immersive simulations done as a team, and an EOL skills station. There was a short debrief after each immersive simulation, and the day concluded with a formal debriefing as a large group. A post-intervention confidence survey was given to fellows at the immediate conclusion of the workshop. Results: All participating fellows (n=17) completed the workshop and surveys. While 82% reported having had ‘a great deal’ of good modeling from attendings on providing EOL care, only 12% reported having had ‘a great deal’ of specific training (i.e. formal teaching or observation) in providing EOL care. Prior to the workshop, 53% of fellows agreed with the statement: “Overall, I feel confident about my ability to provide EOL care to patients.” After the workshop, 88% of fellows agreed or strongly agreed with this statement (Figure 1). For each of the 7 specific EOL care abilities surveyed, fellows’ collective self-reported confidence increased after the workshop, with the exception of the “...ability to address difficult questions (e.g. pain, process of dying, etc.) honestly and compassionately” (Figure 2). Conclusion: Simulation and skills training is an effective and desirable way to teach, practice and integrate skills in EOL care, and can be done in a half-day workshop.
Kamrath H; Goloff N; Norbie E; Woll A
Pediatrics
2019
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Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Wong K; Hwang L; Liu K X; Lee H J; Olch A J
International Journal of Radiation Oncology Biology Physics
2019
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<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice
adolescent; adult; article; controlled study; conversation; face cancer; human; narrative; pain; palliative therapy; terminal care; young adult
A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.
Sansom-Daly U M; Wakefield C E; Patterson P; Cohn R J; Rosenberg A R; Wiener L; Fardell J E
Journal of adolescent and young adult oncology.
2019
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<a href="http://doi.org/10.1089/jayao.2019.0084" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0084</a>
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
Prozora S; Shabanova V; Massaro S; Davidoff A
Pediatric Blood and Cancer
2019
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<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Medical marijuana use for pediatric oncology patients: single institution experience
adolescent; adult; adverse drug reaction; anxiety; article; burn; cancer patient; cancer therapy; child; childhood cancer; clinical article; drug safety; drug therapy; female; human; male; medical cannabis; Medical marijuana; microcapsule; mood; nausea and vomiting; pain; palliative therapy; pediatric oncology; prescription; side effect; sleep; smoke; smoking; supportive care; throat; vaporization; young adult
Medical marijuana (MM) is widespread in many medical fields, including oncology, with limited use in pediatric oncology where research is scarce and often shows conflicting results. This research focuses on alleviating side effects of anticancer treatment as an integral part of supportive and palliative care of children with cancer. We report our experience with MM treatment in 50 children, adolescents, and young adults with different types of cancer during 2010-2017. The main indications for prescriptions were nausea and vomiting, decreased mood, disturbed sleep, and pain. The medication was supplied to 30 patients via oil drops (60%) and 11 via smoking (22%), followed by vaporization, capsules, or combinations of various routes. Positive effects were reported by verbal children and parents in 80% of cases. MM was generally well tolerated with few patients reporting toxicity, with the most common adverse reactions being burning in the throat and anxiety attacks in subjects who chose to smoke the product. We conclude that MM may serve as a potentially useful complementary therapy to conventional supportive treatment of children suffering from cancer at the end of life. Further research is needed on the safety and efficacy and the consequences of prolonged use in pediatric populations. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Ofir R; Bar-Sela G; Weyl Ben-Arush M; Postovsky S
Pediatric Hematology and Oncology.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/08880018.2019.1630537" target="_blank" rel="noreferrer noopener">10.1080/08880018.2019.1630537</a>
A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
anorexia; caregiver; child; conference abstract; controlled study; fatigue; female; health care quality; human; insomnia; irritability; loss of appetite; major clinical study; male; malignant neoplasm; nervousness; pain; palliative therapy; symptom assessment
Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Method(s): A series of systematic questions were presented to all caregivers (if present) and children who were 7 years of age or older at time of initial consultation with pediatric palliative care. Result(s): 122 consecutive children and caregivers were given the survey. 107/108 (99%) of eligible caregivers and 83/97 (86%) of eligible children successfully completed the survey. Lack of appetite (child - 72/83, 87%; caregiver - 89/107, 83%) and pain (child - 71/83, 86%; caregiver - 86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.0001) more frequently than children. Referring medical teams significantly under-diagnosed psychological and other less clinically evident symptoms such as anorexia, fatigue, and insomnia (p < 0.0001). Conclusion(s): Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer needs to become a true standard of care.
Madden K; Charone M; Dibaj S; Mills S; Williams J L; Liu D; Bruera E
Journal of Clinical Oncology. Conference
2018
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<a href="http://doi.org/10.1200/JCO.2018.36.34_suppl.81" target="_blank" rel="noreferrer noopener">10.1200/JCO.2018.36.34_suppl.81</a>
Parents' acceptance and regret about end of life care for children who died due to malignancy
analgesic agent; article; Cancer distress; cancer patient; child; childhood cancer; controlled study; End of life care; health care personnel; home environment; Home-based palliative care; human; India; open ended questionnaire; Paediatric cancer; pain; Palliative; palliative therapy; qualitative research; Qualitative study; respiratory distress; terminal care; Terminal care
Purpose: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. Method(s): This was an observational qualitative study. Parents of in-curable paediatric malignancy patients who died during the years 2016-2018 were interviewed using a pre-formed open-ended questionnaire. Fears during the last phase of child's life, most disturbing symptoms, choice of end of life care plan, regret of care givers and reasons for such choices were noted and analysed. Result(s): Twenty six families were interviewed. A median of 3 months of discordance was noted between declaration of in-curability and acceptance of the same by the family. During terminal months, pain (84.62%) was described as the most bothersome symptom followed by respiratory distress (73.08%). Eighteen families (69%) opted for home-based terminal care, 8 (31%) for hospital-based terminal care. Regret of choice was noted in 62.5% families of the hospital-based care group (separation from home environment being the main reason) and 38.89% of the home-based care group (lack of access to health care personnel and pain medication being the main reasons). Conclusion(s): Home-based care is the preferred option for end of life care by the care givers. Lack of community-based terminal care support system and availability of analgesics are the main areas to work on in India. Copyright © 2019, Springer-Verlag GmbH Germany, part of Springer Nature.
Das K; Khanna T; Arora A; Agrawal N
Supportive Care in Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-019-04806-0" target="_blank" rel="noreferrer noopener">10.1007/s00520-019-04806-0</a>
Procedural burden experienced by children with cancer during their terminal hospital admission
acute respiratory failure; adolescent; amputation; article; artificial ventilation; bone marrow biopsy; bone marrow transplantation; brain ventricle peritoneum shunt; cancer palliative therapy; central nervous system tumor; central venous catheter; child; childhood cancer; cohort analysis; craniotomy; debridement; disease burden; excision; fasciotomy; female; heart arrest; heart surgery; hospital admission; human; intestine resection; invasive procedure; laparoscopy; length of stay; leukemia; lobectomy; major clinical study; male; myringotomy; ostomy; pain; priority journal; public health insurance; retrospective study; segmentectomy; sepsis; spine fusion; stem cell transplantation; terminal care; thoracoscopy; thoracotomy; vascular access; ventriculostomy
Background: Children with chronic conditions, including cancer, have been shown to have high-intensity end-of-life care. We assessed the frequency and timing of invasive procedures that children with cancer undergo during their terminal hospital admission (THA).
Corkum K S; Lautz T B; Hebal F N; Rowell E E
Journal of Pediatric Surgery
2019
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<a href="http://doi.org/10.1016/j.jpedsurg.2018.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpedsurg.2018.10.007</a>
Communicating death and dying through simulation: A project with pediatric residents
acute disease; child; clergy; comfort; communication skill; conference abstract; conversation; curriculum; emergency treatment; human; Likert scale; pain; palliative therapy; residency education; resident; simulation; teaching; terminal care
Program Goals Pediatric residentscare for a wide spectrum of children with acute and chronic disease processes. They are often the first to communicate with families, yet receive little formal training in conveying difficult information. In 2014, during this author's chief resident academic year, many residents expressed feelings of frustration and inadequacy when caring for children at end-of-life, and also reported a lack of opportunities to process their patients' deaths. To address these needs, we partnered with an interdisciplinary team to create an end-of-life communications-based curriculum that was integrated into our existing resident simulation program. We aimed to provide communication opportunities for our residents in a safe, structured, and directly observed environment where they could practice communication skills and reflect on their experiences. We hypothesized that residents would value these simulations as part of their residency training, and would feel more comfortable communicating difficult news after practicing such skills. Evaluation The end-of-life simulation curriculum was developed by an interdisciplinary team of ICU and hospitalist physicians, pediatric palliative care professionals, child life specialists, and hospital chaplains. Over two years, all residents participated in simulations that focused on communicating with parents (standardized actors) in pediatric death and dying situations. Three pausing points were included during the simulation, offering residents the unique opportunity to discuss together how best to approach the next conversation with the standardized parent-actor. Following the simulations, the interdisciplinary team debriefed with the residents, allowing opportunity for reflection and addressing questions and concerns. After each simulation/debriefing cycle, educational resources were provided through an electronic teaching file, as well as opportunities to meet oneon- one with members of the interdisciplinary team for further processing. Pre-tests and post-tests were used to evaluate residents comfort with end-of-life communication and pediatric palliative care provision. A 5-point Likert scale was used to evaluate residents' level of comfort with a variety of skills/topics, including: discussing end-of-life care options with parents, limiting emergency treatment, managing pain/symptoms, pronouncing death, and coping with one's own responses to a child's death. Discussion Pediatric residents feel unprepared to communicate with families in end-of-life situations. Through this innovated simulation curriculum, we have been able to better understand the needs of our resident trainees and by providing exposure to these complex situations in a safe, empowering environment. Following our first year of data collection, we found that 92% of residents reported feeling more comfortable communicating with families in end-of-life situations after participating in a two hour simulation. The residents reported benefitting from these experiences; 100% of residents requested additional training in palliative care. We anticipate having second cycle data available for presentation in Fall, 2016 to further demonstrate the how this innovative simulation enhances pediatric resident education.
Greening H G; Havalad V; Kobler K
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Retrospective Review of the Use of Transdermal Buprenorphine Patches (Butrans) in a Pediatric Population
buprenorphine; buprenorphine transdermal patch; pain; transdermal
Background: Buprenorphine is an opioid medication used for the treatment of moderate to severe pain. In Canada, buprenorphine is not indicated for use in the pediatric population and literature surrounding its use in pediatrics is limited. Our aim was to evaluate the safety of transdermal buprenorphine in a pediatric palliative care setting.Methods: Our study was performed at the IWK Health Centre. Medical records of 11 patients were examined for specific clinical characteristics. The study focused primarily on descriptive results; standard data analyses were not performed.Results: Buprenorphine was found to be well tolerated in our patient population. There were no adverse effects reported in 8 of 11 patients during their treatment with buprenorphine. The remaining 3 patients described mild adverse effects in the form of skin irritation which resolved with topical steroid treatment. Efficacy was reported as anecdotal quotes from patient records.Conclusion: In this study, the use of buprenorphine in this setting was safe in a small group of patients, with the only mild adverse effect noted being a contact dermatitis in 3 patients which resolved quickly. Other studies have also demonstrated buprenorphine to be a safe and an effective opioid for the treatment of severe pain at the end of life in a pediatric population. Given these results, the implementation of buprenorphine in pediatrics may be safe for use in patients who are unable to tolerate traditional opioid analgesic therapies.
Smyth M; Haupt T S; Gregoire M C
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2019.0381" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0381</a>
A Scoping Review of Transdermal Buprenorphine Use for Non-surgical Pain in the Pediatric Population
buprenorphine transdermal patch; pain; palliative; pediatrics; safety
A preliminary evaluation to review the scope and quality of evidence surrounding transdermal buprenorphine use in the pediatric setting for non-surgical pain was conducted. Our review revealed limited data available on the use of transdermal buprenorphine in pediatric patients. Most studies surrounding this subject involve accidental ingestion of buprenorphine and its use in the treatment of neonatal abstinence syndrome. While indicated for use only in adult populations, small studies have shown encouraging results in reducing pain in children with few, if any, adverse effects. This is reassuring from a clinical perspective, as we hope to highlight the available evidence and invite researchers to expand future studies. Through this review, we have identified significant gaps in the literature surrounding the safety and use of buprenorphine in the pediatric population. To our knowledge, there are no major studies investigating this subject, and it is our hope that future studies will explore the use of transdermal buprenorphine as an alternative pain management technique in pediatrics. The intent of our scoping review is to highlight the lack of research in this area; therefore, future studies may be conducted to support its use in North America.
Haupt T S; Smyth M; Gregoire M C
Cureus
2019
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<a href="http://doi.org/10.7759/cureus.5954" target="_blank" rel="noreferrer noopener">10.7759/cureus.5954</a>
A survey-based study identifies common but unrecognized symptoms in a large series of juvenile Huntington's disease
adolescent; priority journal; health survey; human; pain; article; child; female; male; controlled study; adult; clinical article; sleep disorder; Huntington chorea; pruritus; psychosis; tic; auditory hallucination; CAG repeat; juvenile; leg pain; skin irritation; visual hallucination; sleep disturbance/disorders; Juvenile Huntington disease; trajectory; characteristics
Aim: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD: pain, itching, sleeping difficulties, psychosis and tics. Materials & methods: A symptom survey was constructed using the online tool Qualtrics and dispersed to JHD caregivers through websites. Results: A total of 33 surveys were completed. Disrupted sleep was the most prevalent symptom (87%), followed by tics (78%), pain (69%), itching (60%) and psychosis (39%). Conclusion: Despite limitations, the study supports that there are symptoms in the JHD population that are not considered classic, however, are common and significant for patients and caregivers.
Moser A D; Epping E; Espe-Pfeifer P; Martin E; Zhorne L; Mathews K; Nance M; Hudgell D; Quarrell O; Nopoulos P
Neurodegenerative Disease Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.2217/nmt-2017-0019" target="_blank" rel="noreferrer noopener">10.2217/nmt-2017-0019</a>
Intrathecal baclofen treatment an option in X-linked adrenoleukodystrophy
quality of life; pain; limited mobility; priority journal; school child; spasticity; fatigue; clinical examination; human; article; child; male; clinical article; dystonia; case report; 1309378-01-5 (botulinum toxin A); 1638949-86-6 (botulinum toxin A); 1800016-51-6 (botulinum toxin A); 93384-43-1 (botulinum toxin A); 1134-47-0 (baclofen); adrenoleukodystrophy/dt [Drug Therapy]; adrenoleukodystrophy/su [Surgery]; baclofen/dt [Drug Therapy]; baclofen/po [Oral Drug Administration]; baclofen/tl [Intrathecal Drug Administration]; X chromosome linked disorder/dt [Drug Therapy]; X chromosome linked disorder/su [Surgery]; Addison disease; adrenoleukodystrophy/dt [Drug Therapy]; balance disorder; behavior change; bladder dysfunction; botulinum toxin A; clonus; diplopia; drug dose increase; hearing disorder; hyperpigmentation; intrathecal pump; leukodystrophy; range of motion; strabismus; urinary catheter; visual disorder; X chromosome linked disorder/dt [Drug Therapy]; tone and motor problems; X-linked adrenoleukodystrophy; pharmacologic interventions; intrathecal baclofen; baclofen
Background X-linked adrenoleukodystrophy (X-ALD) is a genetic peroxisomal disorder associated with tissue accumulation of very long chain fatty acids (VLCFAs). In approximately one third of affected males, this causes progressive and irreversible damage to the brain white matter. Progress is often rapid with upper motor neuron damage leading to severe spasticity and dystonia. The increased muscle tone is frequently difficult to alleviate with oral drugs. Here, we describe two patients with X-ALD who have received treatment with intrathecal baclofen pumps (ITB). Case study Both boys had a rapidly progressive cerebral form of the disorder resulting, among other things, in escalating spasticity and dystonia causing severe pain, dramatically reducing their quality of life. Both were treated with a variety of oral medications without adequate relief. Both patients tolerated ITB surgery without complications and the positive clinical effects of treatment with ITB became clear in the following weeks and months, with significantly reduced muscle tone, less pain and better sleep. Moreover, general caretaking became easier. Conclusion The treatment of spasticity and dystonia in these patients is difficult partly due to the relentless nature of this progressive disorder. In our two patients, ITB has been effective from both a symptomatic and palliative perspective. We recommend that such treatment be considered as an early option for increased muscle tone in boys with the cerebral form of X-ALD.
Hjartarson H T; Ehrstedt C; Tedroff K
European Journal of Paediatric Neurology
2018
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<a href="http://doi.org/10.1016/j.ejpn.2017.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2017.09.003</a>
Self-injury and aggression in tuberous sclerosis complex: cross syndrome comparison and associated risk markers
Pain; Aggression; problem behavior; Neurosciences & Neurology; Tuberous sclerosis complex; functional-analysis; autism spectrum disorders; intellectual disabilities; ASD; challenging behavior; cognitive impairments; de-lange-syndrome; developmental-disabilities; early-childhood; Impulsivity; psychometric properties; Repetitive/stereotyped behaviour; Self-injury; behavioral problems; De Lange syndrome; tuberous sclerosis; trajectory; characteristics; pain behaviors; mood; low mood; hyperactivity; repetitive language use
Background: Research reporting prevalence rates of self-injurious and aggressive behaviour in people with tuberous sclerosis complex (TSC) is limited. No studies have compared rates of these behaviours in TSC with those in other syndrome groups matched for degree of disability or investigated risk markers for these behaviours in TSC. Methods: Data from the Challenging Behaviour Questionnaire were collected for 37 children, aged 4 to 15 years, with TSC. Odds ratios were used to compare rates of self-injury and aggression in children with TSC with children with idiopathic autism spectrum disorder (ASD), fragile X, Cornelia de Lange and Down syndromes. Characteristics were measured using the Mood Interest and Pleasure Questionnaire, the Activity Questionnaire, the Social Communication Questionnaire, the Repetitive Behaviour Questionnaire, the Wessex Behaviour Schedule and the revised Non-communicating Children Pain Checklist. Mann-Whitney U analyses were used to compare characteristics between individuals with self-injury and aggression and those not showing these behaviours. Results: Rates of self-injury and aggression in TSC were 27% and 50%, respectively. These are high but not significantly different from rates in children with Down syndrome or other syndrome groups. Both self-injury and aggression were associated with stereotyped and pain-related behaviours, low mood, hyperactivity, impulsivity and repetitive use of language. Children who engaged in self-injury also had lower levels of interest and pleasure and showed a greater degree of `insistence on sameness' than children who did not self-injure. Aggression was associated with repetitive behaviour. The majority of these associations remained significant when the association with level of adaptive functioning was controlled for. Conclusions: Behavioural profiles can be used to identify those most at risk of developing self-injury and aggression. Further research is warranted to understand the influence of such internal factors as mood, ASD symptomatology and pain on challenging behaviour in people with intellectual disability.
Eden K E; de Vries P J; Moss J; Richards C; Oliver C
Journal of Neurodevelopmental Disorders
2014
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<a href="http://doi.org/10.1186/1866-1955-6-10" target="_blank" rel="noreferrer noopener">10.1186/1866-1955-6-10</a>
Effect of selective dorsal rhizotomy on daily care and comfort in non-walking children and adolescents with severe spasticity
adolescent; risk factor; medical history; follow up; satisfaction; school child; comfort; cerebral palsy; congenital malformation; human; pain; child; controlled study; clinical article; attention; dystonia; dorsal rhizotomy; scoliosis; leg muscle; tone and motor problems; lipidoses; surgical intervention; selective dorsal rhizotomy; spasticity
Background In non-walking children with severe spasticity, daily care can be difficult and many patients suffer from pain. Selective dorsal rhizotomy (SDR) reduces spasticity in the legs, and therefore has the potential to improve daily care and comfort. Aim To examine effects of SDR on daily care and comfort in non-walking children with severe spasticity due to different underlying neurological conditions. Methods Medical history, changes in daily care and comfort and satisfaction with outcome were assessed retrospectively in non-walking children who underwent SDR in our center, with a mean follow-up of 1y 7m (range 11m-4y 3m). All eligible patients (n = 24, years 2009-2014) were included. Results Mean age at SDR was 12y 4m (SD 4y 3m, range 2y 8m-19y 3m). Associated orthopaedic problems were frequent. Seven patients underwent scoliosis correction in the same session. Most improvements were reported in dressing (n = 16), washing (n = 12) and comfort (n = 10). Median score for satisfaction was 7 on a scale of 10 (range 1-9). SDR resulted in reduction of spasticity in leg muscles. In nine patients dystonia was recorded post-operatively, mainly in children with congenital malformations and syndromes. Interpretation SDR is a single event intervention that can improve daily care and comfort in non-walking children with severe spasticity, and can safely be combined with scoliosis correction. Despite the improvements, satisfaction is variable. Careful attention is necessary for risk factors for dystonia, which may be unmasked after SDR. Copyright © 2016 European Paediatric Neurology Society
Buizer A I; van Schie P E M; Bolster E A M; van Ouwerkerk W J; Strijers R L; van de Pol L A; Stadhouder A; Becher J G; Vermeulen R J
European Journal of Paediatric Neurology
2017
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<a href="http://doi.org/10.1016/j.ejpn.2016.09.006" target="_blank" rel="noreferrer noopener">10.1016/j.ejpn.2016.09.006</a>
Aromatherapy improves nausea, pain, and mood for patients receiving pediatric palliative care symptom-based consults: A pilot design trial
pain; integrative therapy; Aromatherapy; complementary and alternative therapy; mood; nausea; pediatric palliative
OBJECTIVE: The role of aromatherapy in supportive symptom management for pediatric patients receiving palliative care has been underexplored. This pilot study aimed to measure the impact of aromatherapy using validated child-reported nausea, pain, and mood scales 5 minutes and 60 minutes after aromatherapy exposure. METHODS: The 3 intervention arms included use of a symptom-specific aromatherapy sachet scent involving deep breathing. The parallel default control arm (for those children with medical exclusion criteria to aromatherapy) included use of a visual imagery picture envelope and deep breathing. Symptom burden was sequentially assessed at 5 and 60 minutes using the Baxter Retching Faces scale for nausea, the Wong-Baker FACES scale for pain, and the Children's Anxiety and Pain Scale (CAPS) for anxious mood. Ninety children or adolescents (mean age 9.4 years) at a free-standing children's hospital in the United States were included in each arm (total n = 180). RESULTS: At 5 minutes, there was a mean improvement of 3/10 (standard deviation [SD] 2.21) on the nausea scale; 2.6/10 (SD 1.83) on the pain scale; and 1.6/5 (SD 0.93) on the mood scale for the aromatherapy cohort (p < 0.0001). Symptom burden remained improved at 60 minutes post-intervention (<0.0001). Visual imagery with deep breathing improved self-reports of symptoms but was not as consistently sustained at 60 minutes. SIGNIFICANCE OF RESULTS: Aromatherapy represents an implementable supportive care intervention for pediatric patients receiving palliative care consults for symptom burden. The high number of children disqualified from the aromatherapy arm because of pulmonary or allergy indications warrants further attention to outcomes for additional breathing-based integrative modalities.
Weaver M S; Robinson J; Wichman C
Palliative and Supportive Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951519000555" target="_blank" rel="noreferrer noopener">10.1017/s1478951519000555</a>
The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study
adult; article; child; human; palliative therapy; genetic transcription; qualitative research; thematic analysis; home environment; pain; quality of life; education; young adult; semi structured interview; practice guideline; Spain
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. DESIGN: A qualitative methodology was chosen. SETTING: The unit of pediatric palliative care at the Hospital Nino Jesus (Madrid, Spain). POPULATION: The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. METHOD(S): Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. RESULT(S): Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. CONCLUSION(S): The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.
Rico-Mena P; Palacios-Cena D; Martino-Alba R; Chocarro-Gonzalez L; Gueita-Rodriguez J
European journal of physical and rehabilitation medicine
2019
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<a href="http://doi.org/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">10.23736/S1973-9087.19.05474-1</a>
Gabapentin for the treatment of pain manifestations in children with severe neurological impairment: A single-centre retrospective review
child; human; retrospective study; clinical article; palliative care; pain; priority journal; review; alopecia/si [Side Effect]; disease severity; drug efficacy; drug substitution; drug withdrawal; gabapentin/ae [Adverse Drug Reaction]; gabapentin/dt [Drug Therapy]; gabapentin/pv [Special Situation for Pharmacovigilance]; gastroenterology; general paediatrics; hypertransaminasemia/si [Side Effect]; irritability; lethargy/si [Side Effect]; muscle twitch; neurodisability; neurologic disease; pain/dt [Drug Therapy]; pregabalin/dt [Drug Therapy]; pregabalin/pv [Special Situation for Pharmacovigilance]; treatment duration; treatment response; vomiting/dt [Drug Therapy]; vomiting/si [Side Effect]
Pain, irritability and feeding intolerance are common symptoms affecting quality of life in children with severe neurological impairment (SNI). We performed a retrospective study to explore the use of gabapentinoid medications for symptom control in children with SNI. Patients attending the palliative care or gastroenterology department being treated with gabapentin for irritability, vomiting or pain of unknown origin were included. Information was gathered retrospectively from medical documentation. Irritability was reduced in 30 of the 42 patients included. Gabapentin was discontinued in 15 children, 12 of whom then received pregabalin. Three children had a good response to pregabalin, six a minimal improvement and three no improvement. These results support the use of gabapentinoids in this patient cohort. Copyright © Author(s) (or their employer(s)) 2019.
Collins A; Mannion R; Broderick A; Hussey S; Devins M; Bourke B
BMJ Paediatrics Open
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjpo-2019-000467" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2019-000467</a>
End of life care in children with neurodisability and concurrent palliative care needs: An audit of local Paediatric palliative services
child; female; human; male; palliative therapy; awareness; clinical article; terminal care; pain; school child; conference abstract; decision making; monitoring; Canavan disease; cerebral palsy; disorders of mitochondrial functions; documentation; medical specialist; nutrition; Rett syndrome; secondary health care; seizure; social care; spinal muscular atrophy
Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child's needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents' and carers' involvement in the decision-making process for the child and their awareness of the child's life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child's ACP, and the stepwise management of pain.
Hqli F; Santhanam G
Archives of Disease in Childhood
2019
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<a href="http://doi.org/10.1136/archdischild-2019-rcpch.457" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-rcpch.457</a>
Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Medline; child; female; human; male; pain; quality control; systematic review; anxiety; pediatrics; quality of life; checklist; Cinahl; data extraction; Embase; meta analysis; narrative; publication; random sample; research priority; review; synthesis; Web of Science
Background Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have proven detrimental effects on the quality of life of children in an end-of-life context. In order to identify potential quality indicators to eventually improve care, a systematic review of available evidence is needed. The aim of the current systematic review will be to make an overview of the influence of health interventions on associated outcomes related to quality of life at the end of life in seriously ill children. Methods A systematic search will be conducted in MEDLINE, Embase, CENTRAL, CINAHL, and Web of Science. We will include quantitative empirical designs looking into the influence of a health intervention on (proxies of) quality of life at the end of life in seriously ill children. Three independent authors will review titles and abstracts and screen full texts against eligibility criteria. One reviewer will carry out full data extraction and quality assessment, and a 20% random sample will be extracted and assessed by two independent reviewers. We will use the QualSyst Tool for assessment of the quality of the included studies (QualSyst Tool) for quality assessment; overall strength of the body of evidence will be assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach. An overview table of health interventions will be discussed through narrative synthesis. Should sufficient homogeneous publications arise, we will perform meta-analyses with a random-effects model. Our protocol adheres to the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P) checklist for study protocols. Discussion As part of a larger project, we will use the results of this review to identify a first set of quality indicators for the care for children at the end of life. Reviewing the current span of evidence and identifying research gaps will uncover future research priorities into the care for children at the end of life.
Piette VE; Cohen J; Deliens L; Pauwels N; Van Der Werff Ten Bosch J; Beernaert K
Systematic Reviews
2019
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<a href="http://doi.org/10.1186/s13643-019-1059-8" target="_blank" rel="noreferrer noopener">10.1186/s13643-019-1059-8</a>
Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research
adolescent; child; human; pain; female; male; palliative therapy; article; adult; qualitative research; caregiver; life; systematic review; pediatric palliative care; Cinahl; Medline; PsycINFO; pediatric patient; neoplasm; children's voice; language; Meta-summary; publication; voice
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. METHOD(S): A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.
Ghirotto L; Busani E; Salvati M; Di Marco V; Caldarelli V; Artioli G
Palliative & Supportive Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/S1478951518000172" target="_blank" rel="noreferrer noopener">10.1017/S1478951518000172</a>
An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Taiwan; hospice; adolescent; pain; terminal care; oncology ward; education; palliative therapy; dyspnea; social worker; cancer patient; satisfaction; childhood cancer; case study; constipation; fatigue; health care quality; conference abstract; human; child; cancer model; counseling
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. The purpose of this study was to develop an interdisciplinary care model to establishing palliative care into end of life care for children and adolescents with cancer. Design/Methods: The setting of this study was about a 24-bed Pediatric Oncology ward in Taiwan from November 2015 to July 2017. We use "satisfaction with care at the end of life" to measure medical members satisfaction and the instruments was based on literature review. We worked out those methods:(1) Symptom management: scheduled education for symptom control and care of the end of life of patient, such as fatigue, pain, constipation, or dyspnea.(2.) To develop an interdisciplinary care model: we implemented case analysis of the end of life of patient and redesigned a new counseling mechanism. (3) To design implement for age-appropriate: child life specialists are required to set and collected age-appropriate toy from social worker. Results: After our study, It have three aspects for satisfaction score: (1)"recognition of the problem by the medical team" were increased from 5.3 points to 8.1 points; (2)" an interdisciplinary care" were increased from 6.3 points to 9.1 points; (3)" age-appropriate implement " were increased from 5.8 points to 9.7 points. Additional benefits for the rate of hospice-palliative coverage, at the end of life in children and adolescents with cancer, were increased from 68% (2013/1/1~2014/12/31) to 100% (2016/1/1~2017/12/31). Conclusions: We found that children and adolescents who died of cancer experienced substantial suffering in the last month of life. Based on our results, we established an interdisciplinary care model that it is most effectively and healthcare quality of palliative care can be improved.
Lin FR; Hsu PY
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
pain; poverty; palliative therapy; major clinical study; advanced cancer; outcome assessment; cancer patient; cohort analysis; distress syndrome; human; article; child; female; male; quality of life; prevalence; secondary analysis; household income; patient-reported outcome; highest income group; lowest income group
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. Methods: The Pediatric Quality of Life and Symptoms Technology (PediQUEST) multisite clinical trial evaluated an electronic patient-reported outcome system to describe symptom distress and HRQOL in children with advanced cancer via repeated surveys. The authors performed a secondary analysis of PediQUEST data for those children with available parent-reported household income (dichotomized at 200% of the Federal Poverty Level and categorized as low income [<$50,000/year] or high income [>=$50,000/year]). The prevalence of the 5 most commonly reported physical and psychological symptoms was compared between groups. Multivariable generalized estimating equation models were used to test the association between household income and symptom distress and HRQOL. Results: A total of 78 children were included in the analyses: 56 (72%) in the high-income group and 22 (28%) in the low-income group. Low-income children were more likely to report pain than high-income children (64% vs 42%; P=.02). In multivariable models, children from low-income families demonstrated a uniform trend toward higher total (beta<inf>low-high</inf>=3.1; 95% confidence interval [95% CI], -0.08 to 6.2 [P=.06]), physical (beta=3.8; 95% CI, -0.4 to 8.0 [P=.09]), and psychological (beta=3.46; 95% CI, -1.91 to 8.84 [P=.21]) symptom distress compared with children from high-income families. Low income was associated with a uniform trend toward lower total (beta=-7.9; 95% CI, -14.8, to -1.1 [P=.03]), physical (beta=-11.2; 95% CI, -21.2 to -1.2 [P=.04]), emotional (beta=-5.8; 95% CI, -13.6 to 2.0 [P=.15]), social (beta=-2.52; 95% CI, -9.27 to 4.24 [P=.47]), and school (beta=-9.8; 95% CI, -17.8 to -1.8 [P=.03]) HRQOL. Conclusions: In this cohort of children with advanced cancer, children from low-income families were found to experience higher symptom burden and worse QOL.
Ilowite MF; Al-Sayegh H; Ma C; Dussel V; Rosenberg AR; Feudtner C; Kang TI; Wolfe J; Bona K
Cancer
2018
<a href="http://doi.org/%2010.1002/cncr.31668" target="_blank" rel="noreferrer noopener">10.1002/cncr.31668</a>
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
pain; social support; caregiver; terminal care; education; major clinical study; psychologist; outpatient; cancer patient; hospital patient; holistic care; malignant neoplasm; antibiotic agent; conference abstract; financial management; physiotherapist; human; child; female; male; palliative therapy; drug therapy; multidisciplinary team; doctor nurse relation; ambulatory care; dietitian; nutritional counseling; patient coding; physiotherapy; wound
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care IV antibiotics. Other Cankids Social Support services were generally not being offered. Objective of this service was to run a One-stop Social Support Clinic providing holistic care and strengthening Palliative Care Outpatient and Inpatient Services. Design/Methods: Pilot phase of the Clinic (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by trained professional team. The Clinic operated seven days a week, with 68 clinics, providing 11 services. Providers were trained for Patient Navigation and referrals, Standard Operational Procedures and Patient data management. Results: Total 1,204 patients received 7,101 episodes of care. 195(16%) patients received Palliation of symptoms. Indication for inpatient admissions in 8 out of 64 were for end of life care. 23(62%) of 37 new inpatient admissions were from the Clinic. 261 (57%) of 456 patients who came for IV Ambulatory Care received other social support services including Pain, Symptom Management, Psychological, Nutritional, Hematological Support, Physiotherapy, Medical assistance and Investigations and Educational Scholarships. 25 Patient Care Training Sessions were attended by 347 caregivers. 62.6% participants were extremely satisfied and 37.6% satisfied with the services provided. Conclusions: A well run Social Support One-stop Clinic together with a Multi Disciplinary Team including Palliative Care Physicians, Nurses, Psychologists, Nutritionists,Physiotherapists and Patient Navigators at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.
Anis H; Taluja A; Chuki T; Crack L; Arora R; Bagai P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Evaluation of End-of-Life Care Programs at Emily's House Children's Hospice
pain; death; dyspnea; major clinical study; neoplasm; hospice; seizure; conference abstract; human; child; female; male; diagnosis; terminal care; patient care
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides respite, transitional care, symptom management, and end-of-life (EoL) care. Children with serious medical conditions and their families may access any program over months or years but some only access EoL care.
Ross S; Daffern K; Widger K; Rapoport A; Salminen R
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.416" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.416</a>
Wishing well, a home-based Pediatric palliative care service for childhood cancer in thailand
morphine; bereavement; quality of life; pain; death; leukemia; cancer center; lymphoma; palliative therapy; major clinical study; follow up; 52-26-6 (morphine); 57-27-2 (morphine); cancer survival; median survival time; childhood cancer; cancer recurrence; brain tumor; cancer therapy; cohort analysis; home visit; solid malignant neoplasm; conference abstract; human; child; female; male; controlled study; counseling; Thailand
Nuchprayoon I; Chamnanprai S; Raksrithong T
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific
dying; pain; Asia; pediatrics; palliative therapy; dyspnea; health care access; seizure; human; article; child; terminal care; nausea; high income country; analgesic agent/pd [Pharmacology]; analgesic agent/po [Oral Drug Administration]; life; pharmacognosy; symptom; drug bioavailability; online analysis; restlessness; sputum
Chong LA; Chong P H; Chee J
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2017.0626" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0626</a>
Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
hospice patient;pediatric patient;acid;adult;cancer patient;central nervous system cancer;chi square test;Child;conference abstract;constipation;controlled study;corticosteroid;death;diagnosis;diazepam;diphenhydramine;drug formulation;drug therapy;dyspnea;Female;genetic disorder;haloperidol;hospice care;human;hyoscyamine;institutional review;laxative;Length of Stay;levetiracetam;lorazepam;macrogol;major clinical study;metoclopramide;morphine;nausea;ondansetron;opiate;pain;paracetamol;patient information;practice guideline;preschool child;prochlorperazine;retrospective study;salbutamol;seizure;unclassified drug;vitamin
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with adult patients, palliative care for children focuses on holistic care, including the alleviation of physical, psychosocial, and spiritual suffering. Medications are used in hospice patients to palliate physical symptoms of terminal illness, including pain, dyspnea, nausea, and fatigue. The purpose of this study was to characterize the most commonly prescribed medications and medication classes in a population of pediatric hospice patients. Methods We conducted a retrospective review of a patient information database compiled by a national hospice organization. The database contained demographic information, as well as information on drug name, dosage, formulation, and strength. Medications were also characterized by pharmacological class. We compared proportions of the most commonly prescribed pharmacological classes among the three most common admitting diagnoses: cancer, central nervous system disorders, and genetic disorders. We used chi-square test or Fisher's exact test to detect any associations between admitting diagnosis and drug class. The institutional review board at the University of Maryland determined that this study was not human subjects research. Results Of 177 patients in the database, 116 patients were included in the study; these patients were admitted to hospice on or after January 1, 2011 and discharged by death on or before December 31, 2016. Sixty-one patients who were discharged prior to death were excluded. The average age of patients at admission was 6 years old (SD = 6.1) and 63% of patients were female. The median length of stay was 14.5 days (range: 0-411 days). A total of 3 017 medication orders were evaluated. Medication classes used for symptom management were most commonly prescribed. Six of the 10 most commonly prescribed drugs (morphine, lorazepam, acetaminophen, hyoscyamine, prochlorperazine, and haloperidol) were all included in the symptom management medication kits provided to most patients at admission. Other drugs prescribed for over 20% of patients included metoclopramide, diphenhydramine, albuterol, altropine, ondansetron, diazepam, polyethylene glycol, levetiracetam. Opioid analgesics, anxiolytics, anticholinergics, and antiemetics were prescribed to over 50% of patients at some point during admission. Other frequently prescribed medication classes non-opioid anageiscs, anticonvulsants, antiinfectives, laxatives, corticosteroids, acid reducers, antipsychotics, and vitamins/supplements. Of the 20 most commonly prescribed drug classes, patients with cancer were significantly more likely than those with CNS disorders or genetic disorders to be prescribed anticholinergics (p = 0.03), antiemetics (p < 0.0001), non-opioid analgesics (p = 0.003), laxatives (p = 0.003), corticosteroids (p = 0.0004), antihistamines (p = 0.01), acid reducers (p = 0.03), and antipsychotics (p < 0.0001). Conclusions Medications commonly prescribed for children receiving hospice care include those intended to treat symptoms including pain, dyspnea, nausea, seizures, and constipation. A general understanding of medications used in hospice care may be helpful in the development of educational materials, medications guidelines and protocols, and questions for future research.
Sera L;Morgan J;McPherson ML
Postgraduate Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">10.1080/00325481.2018.1512253</a>
Pediatric palliative care and resident education
outpatient; human; child; palliative therapy; comfort; simulation; pediatrics; hospice; pain; conference abstract; survival; curriculum; terminal disease; hospital patient; pediatrician; resident; questionnaire; decision making; exercise; internal medicine; primary medical care
Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient settings among pediatric and internal medicine-pediatrics residents at a tertiary care children's hospital. Background: Palliative care is an emerging field in pediatrics. A policy statement issued by the American Academy of Pediatrics in 2013 recognizes the growing importance of interdisciplinary palliative care and hospice teams in caring for children with life threatening conditions. As medical advancements lead to a broader range of treatment options and increased survival of children with complex medical issues, patients and their families rely on their pediatric providers, both inpatient and outpatient, for an introduction to palliative care. However, pediatric providers at all levels of training have consistently reported minimal training, experience, or competence in key areas of palliative care. A workshop was developed by the authors and conducted among pediatric and internal medicine-pediatrics residents to address these gaps in the current resident curriculum. Research Objectives: The impact of the workshop was measured by changes to an 11-item, Likert-scaled questionnaire administered before and after the workshop. We hypothesized that participants of this study would report increased familiarity and confidence in pe-diatric palliative care after completing the curriculum. Methods: Participants were interns and residents of the UMMS-Baystate pediatric and internal medicine-pediatric pro-grams. The workshop consisted of two one-hour sessions which combined didactics and practical exercises. The first session provided basic definitions and addressed the role of primary care pediatricians in providing palliative care including discussions with family regarding long term goals of care. The second focused on inpatient concepts such as pain control in terminal illness and conducting effective family meetings regarding end of life decision making. Residents were asked to fill out a questionnaire prior to the intervention and after completion of both sessions. Results: Residents reported an overall greater comfort with the topic after the intervention (Pre: Median 3.1, IQR 2.8-3.8, Post: Median 4.1, IQR 3.6-4.3, P=0.003). They also reported better understanding of what pediatric palliative care is (P = 0.001) and more comfort leading a discussion regarding palliative care options for patients (P= 0.007) after the intervention. Conclusions/Implications: After a brief workshop designed for residents, participants reported improved familiarity and comfort level with pediatric palliative care. This educational intervention was able to show that residents benefit from training in pediatric palliative care. We hope that this provides a framework for further educational sessions for pediatric residents. We also hope to use this as a framework for development of a simulation based curriculum for difficult discussions within pediatrics.
Penney J; Kim G; Dietzen D
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Beyond mortality: Assessing pediatric palliative needs
human; child; female; male; diagnosis; controlled study; palliative therapy; pain; major clinical study; conference abstract; patient referral; neonatal intensive care unit; needs assessment; hematology; oncology; pediatric intensive care unit; resident; general practitioner; hospital patient; questionnaire; morbidity; mortality; bone marrow transplantation; heme; nausea; surgery; tertiary health care
Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often inaccurately based on mortality data, specifically the incidence of complex chronic conditions (CCC) at the time of death. These rates based on mortality vary among pediatric patients from 27-60% nationally, with 21% of US pediatric deaths being directly attributable to a CCC. Aim: This study seeks to understand the palliative care needs of an inpatient pediatric population, which we hypothesize will be substantial. Design: A cross-sectional survey was performed using a palliative care referral questionnaire, identifying the following characteristics among pediatric inpatients: 1) serious, life-limiting diagnosis, 2) frequent admissions and escalating care requirements, 3) persistent, poor symptom control, 4) need to clarify the goals of care, or 5) none of the above apply. Setting/Participants: Senior pediatric residents completed the palliative care needs assessment for pediatric patients upon admission to Yale New Haven Children's Hospital in the Fall of 2015. Patients admitted to the pediatric intensive care unit (PICU), hematology, oncology, and bone marrow transplant unit (Heme/Onc/BMT), and to the general medical units under a hospitalist, primary care physician, or subspecialty physician were included. Neonatal intensive care unit and exclusively surgical (non-PICU) patients were excluded. Results: 273 questionnaires were completed over 3 weeks. Nearly 45% of patients (n =122) met at least one palliative care referral criterion. Most patients were identified as having a serious illness (74%), with 70% meeting additional palliative care referral criteria (63/90). In fact, 21% of patients with a serious, life-limiting diagnosis met all four criteria (n = 19). On note, poor symptom control was reported in 55% of patients with positive surveys, comprising 25% of all patients surveyed (67/273), some of whom did not have a serious, life-limiting diagnosis. Data was further evaluated based on location of admission, with 75% of PICU patients (44/59), 56% of Heme/Onc/BMT admissions (25/45), and 31% of general/subspecialty patients meeting at least one palliative care referral criterion. Conclusions: This study identifies a considerable need for palliative care among pediatric inpatients at a tertiary care children's hospital. The results are consistent with national trends among dying patients, but the current study acts to supplement the existing literature by characterizing the need for palliative medicine based on morbidity among living patients. This approach allowed for recognition of the 25% of pediatric inpatients suffering from poor symptom control, such as pain or nausea, who could benefit from pediatric palliative care consultation. Furthermore, these data help to clarify where palliative care services are most urgently needed within the hospital, and can guide the distribution of resources.
Murtha TD; Gielissen K; Marquez A; Prozora S; Massaro S
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Efficacy of adding interoceptive exposure to intensive interdisciplinary treatment for adolescents with chronic pain: A randomized controlled trial
Fear of pain plays an important role in the maintenance of chronic pain. It may be reduced through exposure therapy. This 2-arm parallel samples, randomized controlled trial aimed to investigate whether interoceptive exposure (IE) therapy enhances reductions in fear of pain (primary outcome), pain (pain intensity, pain-related disability, school absence) and emotional characteristics (anxiety, catastrophizing) when implemented as an adjunctive treatment in the context of intensive interdisciplinary pain treatment (IIPT) for pediatric chronic pain patients. N=126 adolescents, aged 11-17 years, who were receiving standard IIPT were randomly assigned to either receive additional IE (n=64) or additional relaxation therapy (RT) (n=62). All patients were assessed at admission, discharge and three months after discharge. The data of N=104 patients were analyzed. Significant large reductions were found in the total score and subscale scores of the Fear of Pain Questionnaire for Children in both study groups (e.g., total score (range 0-60; IE/RT): admission M=23.5/24.9; discharge M=16.0/19.7; p<.001, engp=.27) and mainly large reductions in pain characteristics. There were no greater decreases in the IE-group (p>.1). The exploratory analyses revealed that the patients with high fear of pain before treatment (p<.05, engp>.03) and the patients with abdominal pain (p<.04, engp>.25) showed greater decreases in their fear of pain (total and subscale score) in the IE-group than in the RT-group. In conclusion, the results suggest that IE is not particularly effective for all pediatric chronic pain patients, but patients with high fear of pain before treatment and with abdominal pain strongly benefit from this intervention. TRIAL REGISTRATION: This randomized controlled clinical trial was registered in the "German Clinical Trials Register" (trial number: DRKS00010030; name: Randomisiert kontrollierte Studie zur Wirksamkeit der Schmerzprovokation bei Jugendlichen mit chronischen Schmerzstorungen).
Flack F; Stahlschmidt L; Dobe M; Hirschfeld G; Kesper A; Michalak J; Wager J; Zernikow B
Pain
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/j.pain.0000000000001321" target="_blank" rel="noreferrer noopener">10.1097/j.pain.0000000000001321</a>
Child’s Play: The Role of Play in Mitigating the Fear of Death Among Pediatric Palliative Care Team Patients, Families, and Caregivers
Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including making light of our mortality. In this paper, we examine the role of play as seriously ill children involved with a hospital-based palliative care team live out what may be the remainder of their lives. We question the function that play has, if any, in mitigating the fear of death among dying children and their caregivers. We explore formal and informal manners of therapeutic play among children and adults occurring in moments of terrible stress, pain, and the looming threat of death. We draw on playful representations of death from popular culture and from extended field research conducted with a pediatric palliative care team in a large regional children’s hospital caring for seriously ill children and their families, as patients, families, and caretakers struggle to make sense of their suffering, fear and loss.
Crane JL; Davis CS
Journal of Loss & Trauma
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15325024.2018.1446271" target="_blank" rel="noreferrer noopener">10.1080/15325024.2018.1446271</a>
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, “healthcare users” will be taken to include children who have life-limiting conditions and their families. The question to be addressed is: Review question/objective What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? Background The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide.1-15 This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive.5-8,15 Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children.11,16-18 Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care. Background In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions.9,15,19-23 These are conditions for which no cure is available and for which the probable outcome is premature death.24 Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood24 Although pediatric palliative care is underpinned by the same philosophy as adult palliative care,9,24 children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care.15 For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell.9,15,25 The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care.15,26-29 Such factors warrant considering pediatric palliative care as distinct from palliative care more generally
Ekberg S; Bradford N; Herbert A; Danby S; Yates P
Journal of Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.11124/jbisrir-2015-2413" target="_blank" rel="noreferrer noopener">10.11124/jbisrir-2015-2413</a>
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results: There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion: Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
Journal of Pain and Symptom Management
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</a>
Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease
adolescent; Child; Female; Humans; infant; Male; Young Adult; Pain; Pain Management; Adult; Analgesics; Prognosis; Follow-Up Studies; Prospective Studies; Critical Pathways; Anemia; Preschool; Arterial Occlusive Diseases; Sickle Cell; Tertiary Care Centers
BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has shown that clinical pathways improve care. The purpose of our study was to determine whether a clinical pathway improves the acute management of sickle cell vaso-occlusive crisis (VOC) pain in the pediatric emergency department (PED). PROCEDURE: Pain management practices were prospectively investigated before and after the initiation of a clinical pathway in the PED of an urban, tertiary care center with 50,000 ED visits per year and approximately 200 active sickle cell patients. The pathway included instructions for triage, monitoring, medication administration, and timing of assessments and interventions. Data were eligible from 35 pre-pathway and 33 post-pathway visits. Primary outcome was time interval to administration of first analgesic medication. Statistical analysis was by Student's t-test, using natural-log-transformed data for outcomes with skewed distribution curves. RESULTS: Time interval to first analgesic improved from 74 to 42 minutes (P = 0.012) and to first opioid from 94 to 46 minutes (P = 0.013). The percentage of patients who received ketorolac increased from 57% to 82% (P = 0.03). Decrease in time interval to subsequent pain score assessment was not statistically significant (110 to 72 minutes (P = 0.07)), and change in pain score was not different (P = 0.25). CONCLUSIONS: The use of a clinical pathway for sickle cell VOC in the PED can improve important aspects of pain management and merits further investigation and implementation.
2014-04
Ender KL; Krajewski JA; Babineau J; Tresgallo M; Schechter W; Saroyan JM; Kharbanda A
Pediatric Blood & Cancer
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1002/pbc.24864" target="_blank" rel="noreferrer">10.1002/pbc.24864</a>