Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment
Article #6
BACKGROUND: <⁄span> Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain. OBJECTIVE: <⁄span> To assess how physicians use pharmacotherapy to treat PIUO, and to report a pilot study of a standardized approach to investigating and treating PIUO. METHOD: <⁄span> Part 1 of the present study involved independently presenting a case vignette of a patient with PIUO to six experienced physicians who care for children with neurological impairments. They were asked for medication choices and sequences to empirically treat PIUO. Part 2 was a pilot study of a PIUO protocol. Patients followed a standard pathway for PIUO, referred to as the pathway for unknown pain (PUP). The initial drug sequence for the PUP was based on Part 1. RESULTS: <⁄span> In Part 1, physicians responding to the case vignette listed eight medications (atypical antipsychotics, benzodiazepines, gabapentin, methadone, opioids, selective serotonin reuptake inhibitors, tramadol and tricylic antidepressants) and eight empiric drug sequences. In Part 2, eight children with PIUO (six to 17 years of age; five females, three males) were enrolled in a pilot clinic. Only two had been fully evaluated for nociceptive-inflammatory pain sources before enrollment. At the end of the pilot study, four patients were clinically improved and only three required a study medication. DISCUSSION AND CONCLUSION: <⁄span> Even experienced physicians do not agree on a common approach for medical treatment of PIUO. A standardized pathway is feasible and readily implemented. The proposed PUP has the potential to address PIUO and be the basis for future intervention studies.
2013-10
Siden H; Carleton BC; Oberlander T
Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur
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/10.1155/2013/193937" target="_blank" rel="noreferrer">10.1155/2013/193937</a>
Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early adulthood. These young adults, the first generation to live into adulthood, face multiple challenges transitioning from a plethora of pediatric palliative services to scant adult health services. In a case study, using an innovative bulletin board focus group, we describe the complex interplay of the health, education, and social service sectors in this transition. Our descriptions include system deficits and strengths and the young adults' resilience and coping strategies to overcome those deficits and move forward with their lives. Young adults with pedLTC need knowledgeable providers, coordinated and accessible services, being respected and valued, and services and supports that promote independence. We recommend implementation of multidisciplinary solutions that are focused on young adult priorities to ensure seamless access to resources to support these young adults' health, educational, vocational, and social goals. The input and voice of young adults in the development of these services are imperative to ensure that multisystem services support their needs and life goals.
2013
Cook KA; Siden H; Jack S; Thabane L; Browne G
Nursing Research And Practice
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/10.1155/2013/286751" target="_blank" rel="noreferrer">10.1155/2013/286751</a>
Successful use of indwelling tunneled catheters for the management of effusions in children with advanced cancer
Pediatric oncology; ascites; catheters; indwelling; malignant; pleural effusion
Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for management of MPE/MA in children with advanced cancer. Methods Children with MPE/MA who underwent ITC insertion (2007–2012) were retrospectively reviewed. Clinical, procedural, complication and outcome details were analyzed. Results PleurX® ITCs (n = 12) were inserted in eight patients (5–18 years) with sarcoma (11 MPE, 1 MA), achieving symptom relief and facilitating discharge home post ITC (median 2 days). Median survival following ITC was 51 days. There were two major complications: pain (n = 1), late site infection (n = 1), and five minor complications. Drainage ceased in four patients (pleurodesis/tumor progression). At time of death, six ITCs (five patients) were still in situ. Conclusions ITC appears to be a safe, effective treatment for MPE/MA in advanced pediatric cancer, achieving symptomatic relief and discharge home. Pediatr Blood Cancer © 2013 Wiley Periodicals, Inc.
2013
den Hollander BS; Connolly BL; Sung L; Rapoport A; Zwaan Cm; Grant RM; Parra D; Temple MJ
Pediatric Blood & Cancer
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/10.1002/pbc.24902" target="_blank" rel="noreferrer">10.1002/pbc.24902</a>
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Pediatrics
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).
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</a>
Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment
Adolescent; Analgesics/ Therapeutic Use; Child; Developmental Disabilities/ Complications; Female; Humans; Male; Pain/complications/ Drug Therapy; Pain Management/ Methods; Pilot Projects; Practice Patterns Physicians'/ Statistics & Numerical Data
BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain. OBJECTIVE: To assess how physicians use pharmacotherapy to treat PIUO, and to report a pilot study of a standardized approach to investigating and treating PIUO. METHOD: Part 1 of the present study involved independently presenting a case vignette of a patient with PIUO to six experienced physicians who care for children with neurological impairments. They were asked for medication choices and sequences to empirically treat PIUO. Part 2 was a pilot study of a PIUO protocol. Patients followed a standard pathway for PIUO, referred to as the pathway for unknown pain (PUP). The initial drug sequence for the PUP was based on Part 1. RESULTS: In Part 1, physicians responding to the case vignette listed eight medications (atypical antipsychotics, benzodiazepines, gabapentin, methadone, opioids, selective serotonin reuptake inhibitors, tramadol and tricylic antidepressants) and eight empiric drug sequences. In Part 2, eight children with PIUO (six to 17 years of age; five females, three males) were enrolled in a pilot clinic. Only two had been fully evaluated for nociceptive-inflammatory pain sources before enrollment. At the end of the pilot study, four patients were clinically improved and only three required a study medication. DISCUSSION AND CONCLUSION: Even experienced physicians do not agree on a common approach for medical treatment of PIUO. A standardized pathway is feasible and readily implemented. The proposed PUP has the potential to address PIUO and be the basis for future intervention studies.
Siden H; Carleton BC; Oberlander TF
Pain Research & Management
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).
<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3805346/" target="_blank" rel="noreferrer">PMC3805346/</a>
Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Bereaved Fathers; Family-centered Care; Pediatric Health Care Providers Behaviors
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.
Davies B; Baird J; Gudmundsdottir M
Journal Of Hospice And Palliative Nursing
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).
<a href="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">10.1097/NJH.0b013e3182765a2a</a>
Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases
Terminal Care; Adolescent; British Columbia; Child; Child Preschool; Female; Health Resources/ Utilization; Health Services Needs And Demand; Humans; Infant; Infant Newborn; Length Of Stay/statistics & Numerical Data; Male; Patient Discharge/statistics & Numerical Data; Young Adult
BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the pediatric population in British Columbia, Canada. METHODS: Data from Vital Statistics British Columbia were obtained for the pediatric population that died between 2002/03 and 2006/07. Our sample included three age groups: less than 1 year (excluding sudden infant death syndrome cases), 1 to 19 years, and 20 to 24 years. Using data from the Medical Services Plan and Discharge Abstract Database, we calculated annual rates of resources utilized (number of discharges, number of days in hospital, and number of medical services used) for every pediatric death that was due to an LTD in our selected 5-year time frame. Place of death was also explored. RESULTS: During the fiscal year of death and the fiscal year prior to death, children/adolescents and young adults dying of a pediatric LTD respectively experienced 5.3 and 3.7 hospital discharges, spent 48 and 39 days in the hospital, and required approximately 222 and 230 medical services. Infants were discharged once on average, and required 21 medical services. CONCLUSIONS: Resource utilization was very high for all three age groups, demonstrating the intense need for care by children dying of disease. These findings call for the strengthening of palliative care services in the province.
Chavoshi N; Miller T; Siden H
Journal Of 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).
<a href="https://doi.org/10.1089/jpm.2013.0110" target="_blank" rel="noreferrer"> 10.1089/jpm.2013.0110</a>