Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
child; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Endocrine, Metabolic and Immune Disorders - Drug Targets
2023
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/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</a>
Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
BMC Palliative Care
2023
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/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</a>
Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
European Journal of Pediatrics
2022
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/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</a>
Patient-reported outcome measures in pediatric palliative care-a protocol for a scoping review
Pediatric palliative care; Scoping review; Health and psychosocial instruments; Patient-reported outcome measures; Symptom assessment
BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. METHODS: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. DISCUSSION: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. SYSTEMATIC REVIEW REGISTRATION: https://osf.io/yfch2/ .
Holmen H; Winger A; Steindal SA; Castor C; Kvarme LG; Riiser K; Mariussen KL; Lee A
Systematic Reviews
2021
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/10.1186/s13643-021-01791-6" target="_blank" rel="noreferrer noopener">10.1186/s13643-021-01791-6</a>
Inborn Errors of Metabolism in Pediatric Palliative Care
childhood; life-limiting diseases; metabolic diseases; pediatric palliative care; symptom assessment
BACKGROUND: In parallel with the increase in the number of children with life-limiting or threatening diseases, the need and right of pediatric palliative care also increases. In this study, it was aimed to examine the metabolic diseases, evaluate the symptoms and review the needs in children who were admitted to the pediatric palliative care service. METHOD(S): Following the approval of the local ethics committee (18/7/2019-107), the computer records of patients hospitalized in the pediatric palliative care service between 01.12.2018-01.6.2019 were reviewed retrospectively. Dr Behcet Uz Children's Hospital is a tertiary hospital and pediatric palliative care has 1 year experience. RESULT(S): In the study period, there were 101 patients who were hospitalized in the pediatric palliative care service. Eighteen patients (19.7%) diagnosed with inborn errors of metabolism were included in the study. The average age was 3.2 +/- 2.1 (0-8) years. Although it could not be shown statistically, the duration of hospitalization of patients with congenital malformation was long. CONCLUSION(S): Pediatric palliative care provides the best care with the control of various symptoms in neurodegenerative congenital metabolic diseases that do not have treatment or treatment, but progressive symptoms cannot be prevented. Copyright This article is protected by copyright. All rights reserved.
Harputluoglu N; Kose M; Yilmaz U; Celik T
Pediatrics International
2021
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<a href="http://doi.org/10.1111/ped.14660" target="_blank" rel="noreferrer noopener">10.1111/ped.14660</a>
Spanish Adaptation of the Pediatric Memorial Symptom Assessment Scale for Children, Teens, and Caregivers
cancer; Memorial Symptom Assessment Scale; Msas; patient reported outcomes; pediatrics; symptom assessment; symptom distress; validity
CONTEXT: There are no validated Spanish tools to assess symptom burden in pediatric cancer. The Pediatric Memorial Symptom Assessment Scale (Pediatric-MSAS) is an English valid multidimensional and comprehensive instrument. OBJECTIVES: To validate Pediatric-MSAS-Spanish (MSAS-Child, MSAS-Teen, and MSAS-Caregiver versions) in cancer patients treated in two public hospitals in Buenos Aires, Argentina. METHODS: Cross-sectional study, classical psychometric theory. We recruited a convenience sample of 148 caregivers of children ≥2 years old, 51 young children (7 to 12 years) and 48 adolescents (≥13 years). We assessed feasibility, comprehensibility, internal consistency, and convergent and known-groups validity. RESULTS: Pediatric-MSAS-Spanish was feasible, acceptable and comprehensible. Reliability of MSAS-total and subscale scores was satisfactory (Cronbach alpha: 0.90, 0.89, 0.71 respectively for caregiver, teen, and child MSAS-total score). MSAS-total caregiver, teen, and child scores met a priori criteria for convergent validity correlating with Pediatric Quality of Life Inventory total scores (Spearman correlation (r(s))=-0.59, -0.66, and -0.32, respectively) and visual-analogue-wellbeing scores (r(s)=-0.63, -0.46, and -0.4, respectively). Caregiver-teen correlation was strong for total (r(s)=0.78) and physical (r(s)=0.85) scores, and moderate for global distress index (GDI) (r(s)=0.64) and psychological (r(s)=0.45) scores. MSAS-total caregiver-child correlation was moderate (r(s)=0.30) and Kappa analysis showed poor agreement. All MSAS-Caregiver scores and MSAS-Teen total and physical scores differentiated inpatients/outpatients and patients on/off-treatment, while MSAS-Teen psychological and GDI subscales or MSAS-Child scores did not. CONCLUSION: Pediatric-MSAS-Spanish is feasible and reliable for assessing symptom burden in children with cancer. Validity of MSAS-Caregiver and MSAS-Teen was largely supported. Further work on MSAS-Child is warranted.
Requena ML; Orellana L; Cordeiro V; Luna F; Bevilacqua MS; Gomez K; Wolfe J; Dussel V
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.10.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.10.022</a>
Improving the frequency of symptom assessment in pediatric palliative care patients
awareness; child; clinical evaluation; comfort; conference abstract; e-mail; electronic medical record; hospital patient; human; human cell; information technology; outpatient; Palliative therapy; quality of life; root cause analysis; stem cell; symptom assessment; total quality management
High quality symptom management for children receiving palliative care relies on accurate and timely documentation of symptoms. Our pediatric palliative and comfort care team (PACT) previously established a mechanism in to assess and document symptoms in the electronic medical record (EMR) using a symptoms assessment tool modified from the Memorial Symptom Assessment Scale (MSAS). Our specific aim was to increase the percentage of MSAS evaluations completed and properly documented at the time of consult completion and at least weekly thereafter by PACT providers from 20% to 90% over six months. This project utilized standard quality improvement methodology. We began with a process map, documented process failures using a PARETO chart, and subsequently performed root cause analysis for each failure. Multiple tests of change were run for the following interventions: an initial educational session, MSAS badge reminder cards, adding MSAS awareness to our morning patient huddle, notification of individual completion rates via email, public posting of individual completion rates, a visual reminder with a colorful stamp on daily patient list, modification to the EMR patient list view and EMR flowsheet interface where MSAS is documented. We also performed in-depth reviews of any failures that were identified. Within 4 months of implementation the aim was exceeded and a median of 100% of patients had documented MSAS evaluations. This was considered a significant improvement based on the Institute for Healthcare Improvement Scale. These results have been sustained for an additional 8 months. Factors that impacted success included active engagement of all team members in the improvement process, frequent recognition and treatment of new symptoms, and ongoing updates regarding individual completion rates. Our dependence on the EMR was a limiting factor in sustainability as not all parts of the process were able to be automated and some steps still depend on human factors. Improving existing structure of team communication became critical as we implemented tests of change. Next steps for this project include utilizing the weekly MSAS data available on all patients to study those symptoms experienced specifically by children undergoing stem cell transplant. We will continue to work with our hospital information technology staff to further develop sustainability via process changes in the EMR. In addition we will expand our symptom assessment to include all outpatient consults. Finally, as we have standardized, reliable method to measure symptoms for all inpatients, we intend to design interventions targeting improving symptom management and health-related quality of life in children receiving palliative care in our institution.
Mark M S; McKenna L; Thienprayoon R
Pediatrics
2018
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Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period
cancer; Palliative care; palliative medicine; pediatrics; quality of health care; symptom assessment
BACKGROUND:: About one quarter of children affected with cancer die. For children and their families, the end-of-life period is highly distressing. AIM:: This study focused on how end-of-life care in pediatric cancer patients changed over a period of 10 years and if changes in pediatric palliative care structures were associated with quality of care. DESIGN:: Over a 10-year period, all pediatric oncology departments in one German federal state were invited to participate in a repeated cross-sectional cohort study at three time-points (2005, 2010, 2015). Departments invited parents whose children died due to cancer 5 years earlier to participate. Identical semi-structured interviews were conducted with each cohort by the Survey of Caring for Children with Cancer. In addition, departments provided information on their pediatric palliative care infrastructure. PARTICIPANTS:: In total, 124 families participated; 73% of interviews were conducted with mothers, 18% with fathers, and 9% with both parents. RESULTS:: Parents' perception of symptom occurrence, symptom burden, and effectiveness of symptom-related treatment remained stable over the 10-year period. Over time, the availability of pediatric palliative care ( p < 0.001) as well as quality and satisfaction ratings of care ( p < 0.001) increased significantly. A growing number of children received specialized pediatric palliative care at home during the end-of-life period ( p = 0.009). Along with this development, more families had the chance to plan the location of death ( p = 0.003), and more children died at the preferred location ( p = 0.001). CONCLUSION:: Advances in the availability of pediatric palliative care were associated with improvement in some aspects of quality of care (e.g. location of death) while other aspects, such as effectiveness of symptom management, remained unchanged. Further research is required to determine whether additional improvement in structural quality may increase the effectiveness of symptom management.
Zernikow B; Szybalski K; Hubner-Mohler B; Wager J; Paulussen M; Lassay L; Jorch N; Weber C; Schneider D T; Janssen G; Oommen P T; Kuhlen M; Brune T; Wieland R; Schundeln M; Kremens B; Langler A; Prokop A; Kiener R; Niehues T; Rose M; Baumann-Kohler M; Poppelmann M; Thorer H; Irnich M; Sinha K; Wolfe J; Schmidt P
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/10.1177/0269216318818022" target="_blank" rel="noreferrer noopener">10.1177/0269216318818022</a>
Systematic Symptom Reporting by Pediatric Palliative Care Patients with Cancer: A Preliminary Report
palliative care; patient reported outcomes; pediatric; pediatric oncology; 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. OBJECTIVE: 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 the 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. DESIGN: A series of systematic questions were presented to all caregivers (if present) and children who were seven years of age or older at the time of initial consultation with pediatric palliative care. RESULTS: One hundred twenty-two consecutive children/caregiver dyads were given the survey. One hundred seven of 108 (99%) eligible caregivers and 83 of 97 (86%) eligible children 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 < 0.001) more frequently than children. Referring medical teams significantly underdiagnosed psychological and other less clinically evident symptoms such as lack of appetite, fatigue, and sleep disturbance (p < 0.001). CONCLUSIONS: Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer referred to palliative care should become a true standard of care.
Madden K; Magno C M; Mills S; Dibaj S; Williams J L; Liu D; Bruera E
Journal of Palliative Medicine
2019
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<a href="http://doi.org/10.1089/jpm.2018.0545" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.0545</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>
Development of symptom assessment service at a children's hospice
hospice; symptom assessment; central nervous system; child; clinical article; conference abstract; disability; female; health care personnel; human; male; medical assessment; medical record review; molecular recognition; nursing; patient referral; retrospective study; staff; telephone
Background and aims High symptom burden has been recognised in children with life-limiting conditions (LLC) and symptom assessment and management is a core component of children's palliative care (CPC). A previous audit highlighted a high prevalence of problematic symptoms in children accessing the hospice service prompting the development a symptom management team led by a paedi-atric consultant and CNS in CPC in spring 2016. All children in the earlier audited were in ACT category 3 and 4 and had diagnoses of severe disability with associated complex medical needs. This report aims to describe the development of the service and provide data from the first year's activity. Methods A record of all referrals to the team has been main-tained since its inception. A retrospective chart review was performed and data was collected and recorded on an excel spreadsheet. Data recorded included description of problematic symptoms, team members involved and intervention required. Results Referrals to the team are accepted from nursing and healthcare staff involved in the care of the child. A care pathway, symptom assessment tools and symptoms management plans have been developed. To date 39 children have received support from the team, 7 of the children have died since referral. The CNS, wider nursing and multi-disciplinary team have supported all children referred. Medical assessment has been provided to 30 children. 25 children were offered a short break in the hospice to allow careful evaluation of symptoms using formal symptom assessment tools. All children were provided with a symptom management plan and on-going support, at home, in the hospice or by telephone, individualised according to identified need. Parental and healthcare professional feedback has been positive. Conclusion This report describes the initial establishment of a symptom assessment service in a children's hospice. The service has been developed in recognition of the high burden of problematic symptoms in children with severe disability and complex medical needs. It is anticipated that the service will continue to develop to meet the increasing needs of children with LLCs.
Balfe JM; Cassidy M; Booth A
Archives of Disease in Childhood
2018
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<a href="http://doi.org/10.1136/archdischild-2018-rcpch.421" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.421</a>
Improving the Care of Children With Advanced Cancer by Using an Electronic Patient-Reported Feedback Intervention: Results From the PediQUEST Randomized Controlled Trial
Child; Female; Humans; Male; Palliative Care; Neoplasms; Treatment Outcome; Electronic Health Records; Pilot Projects; Symptom Assessment; Feedback; Intervention Studies; Sickness Impact Profile; quality of life; Preschool
Purpose This study aimed to determine whether feeding back patient-reported outcomes (PROs) to providers and families of children with advanced cancer improves symptom distress and health-related quality of life (HRQoL). Patients and Methods This study was a parallel, multicentered pilot randomized controlled trial. At most once per week, children age ≥ 2 years old with advanced cancer or their parent completed the computer-based Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) survey consisting of age- and respondent-adapted versions of the Memorial Symptom Assessment Scale (MSAS), Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL4.0), and an overall Sickness question. In the intervention group (n = 51), oncologists and families received printed reports summarizing PROs; e-mails were sent to oncologists and subspecialists when predetermined scores were exceeded. No feedback was provided in the control group (n = 53). Primary outcomes included linear trends of MSAS, PedsQL4.0 total and subscale scores, and Sickness scores during 20 weeks of follow-up, along with child, parent, and provider satisfaction with PediQUEST feedback. Results Feedback did not significantly affect average MSAS, PedsQL4.0, or Sickness score trends. Post hoc subgroup analyses among children age ≥ 8 years who survived 20 weeks showed that feedback improved PedsQL4.0 emotional (+8.1; 95% CI, 1.8 to 14.4) and Sickness (−8.2; 95% CI, −14.2 to −2.2) scores. PediQUEST reports were valued by children, parents, and providers and contributed at least sometimes to physician initiation of a psychosocial consult (56%). Conclusion Although routine feedback of PROs did not significantly affect the child’s symptoms or HRQoL, changes were in expected directions and improvements observed in emotional HRQoL through exploratory analyses were encouraging. Importantly, children, parents, and providers value PRO feedback.
2014-03
Wolfe J; Orellana L; Cook EF; Ullrich CK; Kang TI; Geyer JR; Feudtner C; Weeks Jane C; Dussel V
Journal Of Clinical Oncology
2014
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Journal Article
<a href="http://doi.org/10.1200/JCO.2013.51.5981" target="_blank" rel="noreferrer">10.1200/JCO.2013.51.5981</a>
Neuropathic cancer pain: prevalence, severity, analgesics and impact from the European Palliative Care Research Collaborative-Computerised Symptom Assessment study
adolescent; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Neoplasms; Pain Measurement; Adult; Prevalence; Analgesics; Aged; Middle Aged; Neuralgia; Symptom Assessment; quality of life; 80 and over; Life Expectancy; Neoplasm Metastasis
BACKGROUND: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population. AIM: We hypothesised that patients with neuropathic cancer pain had more intense pain, experienced greater suffering and were treated with more analgesics than those with nociceptive cancer pain, and a neuropathic pain screening tool, painDETECT, would perform as well in those with cancer pain as is reported in those with non-cancer pain. DESIGN: The data were obtained from an international cross-sectional observational study. SETTING/PARTICIPANTS: A total of 1051 patients from inpatients and outpatients, with incurable cancer completed a computerised assessment on symptoms, function and quality of life. In all, 17 centres within eight countries participated. Medical data were recorded by physicians. Pain type was a clinical diagnosis recorded on the Edmonton Classification System for Cancer Pain. RESULTS: Of the patients, 670 had pain: 534 with nociceptive pain, 113 with neuropathic pain and 23 were unclassified. Patients with neuropathic cancer pain were significantly more likely to be receiving oncological treatment, strong opioids and adjuvant analgesia and have a reduced performance status. They reported worse physical, cognitive and social function. Sensitivity and specificity of painDETECT for identifying neuropathic cancer pain was less accurate than when used in non-cancer populations. CONCLUSIONS: Neuropathic cancer pain is associated with a negative impact on daily living and greater analgesic requirements than nociceptive cancer pain. Validated assessment methods are needed to enable early identification of neuropathic cancer pain, leading to more appropriate treatment and reduced burden on patients.
2013-09
Rayment C; Hjermstad MJ; Aass N; Kaasa S; Caraceni A; Strasser F; Heitzer E; Fainsinger R; Bennett MI; (EPCRC) European Palliative Care Research Collaborative
Palliative Medicine
2013
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/10.1177/0269216312464408" target="_blank" rel="noreferrer">10.1177/0269216312464408</a>
The limitations of "how are you feeling?"
Patient- Centered Care; Patient-reported Outcomes; Pediatric Palliative Care; Quality Of Life; Symptom Assessment
Rosenberg AR; Orellana L; Wolfe J; Dussel V
Journal Of Pain And Symptom 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="https://doi.org/10.1016/j.jpainsymman.2017.11.014" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.11.014</a>
Problematic Symptoms In Children Attending For Short Breaks At A Children's Hospice; Are We Missing An Opportunity For Symptom Assessment And Management?
Female; Hospice; Male; Symptom Assessment; Child; Clinical Article; Clinical Nurse Specialist; Diagnosis; Family Study; Health Care Delivery; Human; Information Processing; Irritability; Nursing; Pain Assessment; Pediatrician; School Child; Seizure; Sleep
Aim Symptom assessment is a core component of paediatric palliative care. This audit aimed to determine whether the symptoms of children attending for routine short breaks in a children's hospice were assessed. The development of a formal symptom assessment team is also described. Methods The admission notes of all children attending for respite over a 2 week period in Feb 2016 were examined and data collected on Excel. The data was pulled from Vitro an online data system used within the hospice to record all nursing, medical and multi-disciplinary notes and all contacts with the family and professionals. Information gathered included diagnoses and ACT category, problematic symptoms and the use of formal symptom assessment tools. Results A total of 22 children attended for respite over the first 2 weeks of February 2016. The average age was 7 years 2 months with a range of 1 year 11 months to 17 years. A broad range of conditions were included, the majority were from ACT category 4. As described in previous studies of children with life-limiting conditions there was a high burden of problematic symptoms among the children. 16/22 children were noted to have at least 1 symptom on the routine respite admission paperwork and nursing notes identified ongoing symptoms during the short break in 12 of the 24 children. 7/22 had respiratory symptoms, 2/22 had problematic seizures. Irritability and pain were noted in 2/22 and 3/22 respectively. 3/22 children were recorded as having poor sleep. Disappointedly although symptoms were recognised, symptom management action was only taken in 5 cases. No formal recognised symptom management tool was used. Of note the FLACC pain scale has been incorporated into the hospice paperless chart but was not used in any case. Outcome The results of the initial audit highlighted the need to change service delivery and a new symptom assessment service incorporating a clinical nurse specialist and paediatrician with support from the broader clinical team has been developed. To date 14 children have received support from the symptom assessment team and a reaudit of routine short breaks in ongoing.
Balfe J M; Booth A; Ritchie B
Archives Of Disease In Childhood
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/10.1136/archdischild-2017-313087.515" target="_blank" rel="noreferrer">10.1136/archdischild-2017-313087.515</a>
Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care
Perception; Procedures; Adult; Cross Sectional Study; Death; Dyspnea/di [diagnosis]; Female; Home Care; Human; Male; Pain/di [diagnosis]; Palliative Therapy; Parent; Pediatrics; Psychology; Quality Of Life; Questionnaire; Retrospective Study; Standards; Symptom Assessment
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures could be treated more successfully than other symptoms. Successful symptom perception was achieved in most cases and predicted the quality of symptom treatment (R 2, 0.612). Concordant assessment of symptom severity between parents and healthcare professionals (HCPs) improved the satisfaction with the care provided (p = 0.037) as well as the parental quality-of-life (p = 0.041). Even in cases with unsuccessful symptom control, parents were very satisfied with the SHPPC team's care (median 10; numeric rating scale 0-10) and rated the child's death as highly peaceful (median 9). Significance of the results: The quality and the concordance of symptom perception between parents and HCPs essentially influence parental quality-of-life as well as parental satisfaction and constitute a predictive factor for the quality of symptom treatment and palliative care. OBJECTIVE: This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and end-of-life care for children. METHODS: In this retrospective, cross-sectional study, parents were surveyed at the earliest three months after their child's death. All children were cared for by a specialized home pediatric palliative care team that provides a 24/7 medical on-call service. Questionnaires assessed symptom prevalence and intensity during the child's last month of life as perceived by parents, symptom perception, and treatment by medical staff. The responses were correlated with essential palliative care outcome measures (e.g., satisfaction with the care provided, quality-of-life of affected children and parents, and peacefulness of the dying phase).
Vollenbroich R; Borasio GD; Duroux A; Grasser M; Brandstatter M; Fuhrer M
Palliative & Supportive Care
2016
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).
10.1017/S1478951515000462