Members of the PedPalASCNET team have published extensively nationally and internationally about pediatric palliative care. Click on the title to see more information about each publication, including where to access full-text when available.
2022
↡↡ Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
Authors: Fishman I, Siden H, Vadeboncoeur C
Journal Information: (2022) BMC Pediatrics
Background: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition, communication, and motor skills are impaired and other organ systems are impacted. Pain is difficult to identify and treat in children with SNI because of communication impairment. When a clear cause of pain is not determined, the term “Pain and Irritability of Unknown Origin (PIUO)” is used to describe pain-like behaviours. This study explores the clinical care received by children with SNI admitted to hospital after presenting to the emergency department of a tertiary pediatric hospital with pain or irritability. Findings are compared to the approach suggested in the PIUO pathway, an integrated clinical pathway for identifying and treating underlying causes of pain and irritability in children with complex conditions and limited communication.
Methods: Retrospective chart review of children (age 0 to 18 years inclusive) with diagnoses compatible with SNI presenting with pain, irritability, and/or unexplained crying that required hospitalization between January 1st, 2019 and December 31st, 2019. Descriptive statistics were used to analyze the clinical care received by children in whom a source of pain was identified or not. In children for whom no cause of pain was identified, investigations completed were compared to the PIUO pathway.
Results: Eight hospital admissions of six unique children were included for data analysis. A cause for pain and irritability was identified and resolved in three patients. In children with PIUO, there were gaps in history taking, physical examination, and investigations that might have allowed a cause of pain and irritability to be found. Pain was assessed using the r-FLACC pain scale and varying medications for pain/irritability were given during each hospital admission.
Conclusion: Children with SNI admitted to a tertiary pediatric hospital did not undergo a standardized approach to identifying a cause of pain and irritability. Future efforts should explore the effectiveness of the PIUO pathway, a standardized approach to reducing and resolving pain in children with SNI.
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↡↡ The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin
Authors: Rizakos S, Parmar A, Siden H, Orkin J
Journal Information: (2022) Journal of Pain and Symptom Management
Background and objective: Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect parental caregivers and families. The primary objective of this study was to understand the parental caregiver experience of caring for a child with SNI who experiences persistent PIUO.
Methods: We conducted a qualitative study using semi-structured interviews to explore the experience of parental caregivers of children with SNI. Interview guide questions focused on exploring pain behaviours, the diagnostic process, pharmacological and non-pharmacological management, healthcare-team support, discussion surrounding irritability, and family impact. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed by 2 independent reviewers using thematic analysis.
Results: 15 parental caregivers were interviewed, with 93% being mothers and 33% being a visible minority. Interviews revealed 3 major themes: 1) Variations in Clinical Care for PIUO; 2) The Experience and Challenges of Living with PIUO); 3) Managing the Impact of PIUO on Parental Well Being. Interviews demonstrated that parent and child can be viewed as a dyad, in which the child’s experience is inherently linked to the parental experience.
Conclusion: Parental caregivers described caring for a child with persistent PIUO as physically and emotionally exhausting, and negatively impacting family quality of life. Interviews highlighted avenues of future exploration for clinical care, including both enhanced management pathways for children and supportive resources for education and coping for parents.
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2021
↡↡ Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
Authors: Gibbard M, Mount D, Rassekh SR, Siden H
Journal Information: (2021). CMAJ Open
Background: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization.
Methods: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children’s Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child’s cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description.
Results: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality.
Interpretation: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.
DOI: 10.9778/cmajo.20200212
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↡↡ Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
Authors: Boyden JY, Feudtner C, Deatrick JA, Widger K, LaRagione G, Lord B, Ersek M
Journal Information: (2021). BMC Palliative Care
Background: Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home ([email protected]). Despite the growth in [email protected], no standardized measures exist to evaluate whether [email protected] provided in the U.S. meets the needs and priorities of children and their families.
Method(s): We developed and conducted a preliminary evaluation of a family-reported measure of [email protected] experiences using a multi-method, multi-stakeholder approach. Our instrument development process consisted of four phases. Item identification and development (Phase 1) involved a comprehensive literature search of existing instruments, guidelines, standards of practice, and [email protected] outcome studies, as well as guidance from a PPHC stakeholder panel. Phase 2 involved the initial item prioritization and reduction using a discrete choice experiment (DCE) with PPHC professionals and parent advocates. Phase 3 involved a second DCE with bereaved parents and parents currently receiving care for their child to further prioritize and winnow the items to a set of the most highly-valued items. Finally, we conducted cognitive interviews with parents to provide information about the content validity and clarity of the newly-developed instrument (Phase 4).
Result(s): Items were compiled predominantly from three existing instruments. Phase 2 participants included 34 PPHC providers, researchers, and parent advocates; Phase 3 participants included 47 parents; and Phase 4 participants included 11 parents. At the completion of Phase 4, the Experiences of Palliative and Hospice Care for Children and Caregivers at Home ([email protected]) Measure contains 22 of the most highly-valued items for evaluating [email protected] These items include “The care team treats my child’s physical symptoms so that my child has as good a quality of life as possible”, “I have regular access to on-call services from our care team”, and “The nurses have the knowledge, skills, and experience to support my child’s palliative or hospice care at home.”
Conclusion(s): The [email protected] Measure is the first known to specifically measure family-reported experiences with [email protected] in the U.S. Future work will include formal psychometric evaluation with a larger sample of parents, as well as evaluation of the clinical utility of the instrument with [email protected] teams.
DOI: 10.1186/s12904-020-00703-0
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2020
↡↡ Transition from children’s to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison
Authors: Kerr H, Widger K, Cullen-Dean G, Price J, O’Halloran P
Journal Information: (2020). BMC Palliative Care
Background: Managing transition of adolescents/young adults with life-limiting conditions from children’s to adult services has become a global health and social care issue. Suboptimal transitions from children’s to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children’s to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.
Methods: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.
Results: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centered on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.
Conclusion: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
DOI: 10.1186/s12904-020-00620-2
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↡↡ Pediatric Project ECHO®: A Virtual Community of Practice to Improve Palliative Care Knowledge and Self-Efficacy among Interprofessional Health Care Providers
Authors: Lalloo C, Osei-Twum J, Rapoport A, Vadeboncoeur C, Weingarten K, Veldhuijzen van Zanten S, Widger K, Stinson J
Journal Information: (2020). Journal of Palliative Medicine
Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with life-limiting illness.
Objectives: To develop, implement, and evaluate the Project ECHO model within the pediatric palliative care (PPC) context. Specific objectives were to evaluate (1) participation levels, (2) program acceptability, (3) HCP knowledge changes, (4) HCP self-efficacy changes, and (5) perceived practice changes after six months.
Intervention: An interprofessional PPC curriculum was informed by a needs assessment. The curriculum was delivered through monthly virtual 90-minute TeleECHO sessions (didactic presentation and case-based learning) from January 2018 to December 2019. The program was freely available to all HCPs wishing to participate.
Design: A mixed-methods design with repeat measures was used. Surveys were distributed at baseline and six months to assess outcomes using 7-point Likert scales. Descriptive and inferential statistical analyses were conducted. The study was approved by the Research Ethics Board at the Hospital for Sick Children.
Results: Twenty-four TeleECHO sessions were completed with a mean of 32 ± 12.5 attendees. Acceptability scores (n = 43) ranged from 5.1 ± 1.1 to 6.5 ± 0.6. HCPs reported improvements in knowledge and self-efficacy across most topics (11 out of 12) and skills (8 out of 10) with demonstrated statistical significance (p < 0.05). Most participants reported positive practice impacts, including enhanced ability to provide PPC in their practice.
Conclusion: Project ECHO is a feasible and impactful model for fostering a virtual PPC-focused community of practice among interprofessional HCPs.
DOI: 10.1089/jpm.2020.0496
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↡↡ Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
Authors: Aldridge CE, Osiovich H, Siden H, Elliott AM
Journal Information: (2020). Journal of Genetic Counseling
Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a qualitative study, using an interpretive description framework and thematic analysis, to gain further insight into parents’ perceptions of the value and utility of GWS for their infant. We sought to explore whether parents’ perceptions differ if their child received a diagnosis or not, and whether their child is living or deceased. Semi-structured, telephone interviews were conducted with parents of infants who had rapid exome sequencing while in the neonatal intensive care unit at BC Women’s Hospital in Vancouver, Canada. Interviews addressed perceived benefits and harms of GWS and included an evaluation of decisional regret. Parents of 27 probands were approached and 14 (52%; 13 mothers and 1 father) participated in interviews. On average, 26 months had elapsed from the time of results to the interview. Six themes were identified. Firstly, parents had a positive regard for GWS. The results of GWS helped provide context for their child’s admission to the NICU, and all parents experienced relief following receiving the results. A diagnosis by GWS enabled parents to picture the future, form connections with other parents, and coordinate their child’s care. Lastly, some parents experienced discomfort with the concept of a genetic diagnosis, and interestingly felt lack of a genomic diagnosis indicated a reduced severity of their infant’s condition. Decisional regret post-results was found to be low. Our results highlight how parents cope with the results of GWS and suggest that a genetic counselor can have an important role in helping families understand and adjust to these results in the neonatal intensive care unit.
DOI: 10.1002/jgc4.1353
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↡↡ Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Authors: Stochitoiu I, Vadeboncoeur C.
Journal Information: (2020). Health Services Insights
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs Assessment in carers of children, seeking to evaluate and improve its ability to capture their needs. This is a prospective pilot study of family carers of children with serious illness receiving care at a pediatric hospice. Thirty carers completed the self-assessment form. Additional feedback was sought inquiring about the appropriateness of questions and missing information relevant to the pediatric setting. All participants reported the assessment captured important information across multiple domains. Additional questions surrounding extra costs, home and school supports, as well as direct impacts of caregiving activities on pain and relationships were identified as important adaptations. The most common unmet needs in carers and care recipients were episodic relief from caregiving (n=17) and housing adaptation (n=17), respectively. Overall, a comprehensive assessment form is feasible in identifying the diverse needs of family carers of children. Future research should focus on using pediatric specific interRAI tools to guide improvements in policy and practice that can address unmet needs.
DOI: 10.1177/1178632920972655
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↡↡ Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions
Authors: Bao D, Feichtinger L, Andrews G, Pawliuk C, Steele R, Siden H
Journal Information: (2020). Journal of Pain and Symptom Management
Context: For parents, family, or clinicians of children with rare life-threatening conditions, there is little information regarding likely symptoms, illness trajectory, and end-of-life care.
Objectives: This descriptive analysis of a bereaved cohort recruited in the charting the territory study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders, and care provided preceding and during the end of life.
Methods: Of the 275 children enrolled in the Charting the Territory study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions, and medical information were collected via chart review, interviews, and surveys.
Results: Fifty-one of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n = 2) to time of death (n = 3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children.
Conclusion: Although much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering.
DOI: 10.1016/j.jpainsymman.2020.08.033
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↡↡ Efficacy and safety of paediatric medicinal cannabis use: A scoping review
Authors: Pawliuk C, Chau B, Rassekh RS, McKellar T, Siden H
Journal Information: (2020). Paediatrics & Child Health
Introduction: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety.
Objective: To map the available evidence on the efficacy and safety of medicinal cannabis in children and adolescents.
Methods: We conducted a scoping review and searched six electronic databases and grey literature. A study was eligible for inclusion when it investigated the efficacy or safety of medicinal cannabis for any condition, more than half of the participants were 0 to 18 years old, and had any study design except single case reports.
Results: We included 36 studies in our final analysis, 32 of which investigated the efficacy or safety of cannabis in treatment-resistant epilepsy. The remaining 4 studies examined patients with cancer, dysautonomia, Epidermolysis Bullosa, and motor disorders.
Conclusions: There is a lack of evidence on the efficacy and safety of medicinal cannabis in most paediatric conditions.
DOI: 10.1093/pch/pxaa031
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↡↡ Toward an understanding of advance care planning in children with medical complexity
Authors: Orkin J, Beaune L, Moore C, Weiser N, Arje D, Rapoport A, Netten K, Adam S, Cohen E, Amin R
Journal Information: (2020). Pediatrics
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) often have multiple life-limiting conditions with no unifying diagnosis and an unclear prognosis and are at high risk for morbidity and mortality. Advance care planning (ACP) conversations need to be uniquely tailored to this population. Our primary objective for this study was to develop an in-depth understanding of the ACP experiences from the perspectives of both parents and health care providers (HCPs) of CMC.
METHODS: We conducted 25 semistructured interviews with parents of CMC and HCPs of various disciplines from a tertiary pediatric hospital. Interview guide questions were focused on ACP, including understanding of the definition, positive and negative experiences, and suggestions for improvement. Interviews were conducted until thematic saturation was reached. Interviews were audio recorded, transcribed verbatim, coded, and analyzed using content analysis.
RESULTS: Fourteen mothers and 11 HCPs participated in individual interviews. Interviews revealed 4 major themes and several associated subthemes (in parentheses): (1) holistic mind-set, (2) discussion content (beliefs and values, hopes and goals, and quality of life), (3) communication enhancers (partnerships in shared decision-making, supportive setting, early and ongoing conversations, consistent language and practice, family readiness, provider expertise in ACP discussions, and provider comfort in ACP discussions), and (4) the ACP definition.
CONCLUSIONS: Family and HCP perspectives revealed a need for family-centered ACP for CMC and their families. Our results aided the development of a family-centered framework to enhance the delivery of ACP through a holistic mind-set, thoughtful discussion content, and promoting of conversation enhancers.
DOI: 10.1542/peds.2019-2241
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↡↡ Breaking down silos: consensus-based recommendations for improved content, structure, and accessibility of advance directives in emergency and out-of-hospital settings
Authors: Carter AJE, Earle R, Grégoire M-C, MacConnell G, MacDonald T, Frager G
Journal Information: (2020). Journal of Palliative Medicine
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care. In the Emergency Department or when paramedics respond to the home, ADs are further challenged by issues of clarity of content, contextual relevance, and accessibility.
Objectives: (1) What content should be in AD for medical emergencies, and (2) what would ensure the AD is accessible in times of crisis?
Design: Phase 1 involved a review of existing AD and published literature to generate a list of candidate elements. Phase 2 presented these in an online survey using modified Delphi method to paramedics, emergency nurses, and physicians. During phase 3, a focus group with palliative and emergency care providers and information technology experts was held regarding current accessibility of AD and a vision for improvement. The detailed focus group notes were coded using inductive analysis.
Results: Fifty-five candidate elements were provided for the Delphi. After three rounds, 36 panelists achieved consensus on 46 elements. Participation was greater than 80% in all rounds. From the focus group on access, six themes emerged; (1) imprecise language, (2) mismatch of protocols, (3) lack of understanding by patients/families, (4) lack of AD, (5) difficulty accessing AD, and (6) opportunities: database, education.
Conclusion: This project makes recommendations to improve palliative care in emergency or crisis situations and facilitate care consistent with patient’s goals: (1) a consensus-based template for AD content; and (2) development of a centralized database. These findings served as the foundation for the “Paramedics Providing Palliative Care at Home” program.
DOI: 10.1089/jpm.2019.0087
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↡↡ Use of oral cannabis extracts in the pediatric palliative care setting: A retrospective chart review
Authors: Doherty M, Power L, Attala M, Vadeboncoeur C
Journal Information: (2020). Palliative Medicine
DOI: 10.1177/0269216320904315
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↡↡ Engaging fathers in pediatric palliative care research
Authors: Nicholas D, Belletrutti M, Blumberg J, Ing S, Rapoport A, Barrera M
Journal Information: (2020). Journal of Social Work in End-of-Life & Palliative Care
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers’ desire to gain from study participation either for themselves or others, perception of the study’s importance, sense of appreciation for the study’s focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers’ appraisal of fathers’ lack of well-being, bereaved fathers’ self-reported poor coping and the inability to locate and contact fathers, particularly after a child’s death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing “father-focused” studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers’ contact information.
DOI: 10.1080/15524256.2019.1703877
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↡↡ Scoping review of symptoms in children with rare, progressive, life-threatening disorders
Authors: Pawliuk C, Widger K, Dewan T, Brander G, Brown HL, Hermansen A-M, Grégoire M-C, Steele R, Siden H
Journal Information: (2020). BMJ Supportive & Palliative Care
Background Q3 conditions are progressive, metabolic, neurological or chromosomal childhood conditions without a cure. Children with these conditions face an unknown lifespan as well as unstable and uncomfortable symptoms. Clinicians and other healthcare professionals are challenged by a lack of evidence for symptom management for these conditions.
Aims In this scoping review, we systematically identified and mapped the existing literature on symptom management for children with Q3 conditions. We focused on the most common and distressing symptoms, namely alertness, behavioural problems, bowel incontinence, breathing difficulties, constipation, feeding difficulties, sleep disturbance, temperature regulation, tone and motor problems and urinary incontinence. For children with complex health conditions, good symptom management is pertinent to ensure the highest possible quality of life.
Methods Scoping review. Electronic database searches in Ovid MEDLINE, Embase and CINAHL and a comprehensive grey literature search.
Results We included 292 studies in our final synthesis. The most commonly reported conditions in the studies were Rett syndrome (n=69), followed by Cornelia de Lange syndrome (n=25) and tuberous sclerosis (n=16). Tone and motor problems were the most commonly investigated symptom (n=141), followed by behavioural problems (n=82) and sleep disturbance (n=62).
Conclusion The evidence for symptom management in Q3 conditions is concentrated around a few conditions, and these studies may not be applicable to other conditions. The evidence is dispersed in the literature and difficult to access, which further challenges healthcare providers. More research needs to be done in these conditions to provide high-quality evidence for the care of these children.
DOI: 10.1136/bmjspcare-2019-001943
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2019
↡↡ A novel classification system for research reporting in rare and progressive genetic conditions
Authors: van Karnebeek DMC, Beumer D, Pawliuk C, Goez H, Mostafavi S, Andrews G, Steele R, Siden H
Journal Information: (2019). Developmental Medicine & Child Neurology
Aim: To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting.
Method: A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss’ kappa (κ).
Results: Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51–0.63), indicating moderate agreement (0.41–0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65–0.77), indicating substantial agreement (0.61–0.80).
Interpretation: Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required.
DOI: 10.1111/dmcn.14180
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↡↡ Retrospective review of the use of transdermal buprenorphine patches (butrans) in a pediatric population
Authors: Smyth M, Haupt TS, Grégoire, M-C
Journal Information: (2019). Journal of Palliative Medicine
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.
DOI: 10.1089/jpm.2019.0381
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↡↡ A scoping review of transdermal buprenorphine use for non-surgical pain in the pediatric population
Authors: Haupt TS, Smyth M, Grégoire, M-C
Journal Information: (2019). Cureus
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.
DOI: 10.7759/cureus.5954
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↡↡ Impact of specialized pediatric palliative care programs on communication and decision-making
Authors: Streuli JC, Widger K, Medeiros C, Zuniga-Villanueva G, Trenholm M
Journal Information: (2019). Patient Education & Counseling
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through September 2018. RESULTS: We reviewed 13 studies analyzing the impact of SPPC programs on communication and decision-making using a wide range of outcome indicators. Study quality was poor in 58% of included papers. SPPC programs improved communication and decision-making between families and healthcare professionals (HCPs), within and between families, and among HCPs. CONCLUSION: SPPC programs generally support and improve communication and decision-making for children with life-threatening conditions, their families and associated HCPs. Families referred to an SPPC program had more discussions with HCPs on a broad variety of topics. However, data on communication with children, siblings, and other family members was scarce and of poor quality. PRACTICE IMPLICATIONS: More research on SPPC program efficacy is needed from the perspective of the ill child, as well as about barriers to end-of-life discussions and the specific aspects of SPPC programs responsible for improving outcomes.
DOI:10.1016/j.pec.2019.02.011
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↡↡ The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital
Authors: Muskat B, Greenblatt A, Anthony S, Beaune L, Hubley P, Newman C, Brownstone D, Rapoport, A
Journal Information: (2019). Death Studies
This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.
DOI: 10.1080/07481187.2018.1526829
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*This list of publications is comprised of articles in journals and book chapters written and published by one or more PedPalASCNET team members. Some of the articles are available for free while others are subscription based. Free articles will be indicated as such.