Dataset Information

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.

ABSTRACT:

Context

Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.

Objective

We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.

Methods

We searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.

Results

We screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.

Conclusion

SPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.

SUBMITTER: Kaye EC

PROVIDER: S-EPMC9896574 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.

Kaye Erica C EC Weaver Meaghann S MS DeWitt Leila Hamzi LH Byers Elizabeth E Stevens Sarah E SE Lukowski Joe J Shih Brandon B Zalud Kristina K Applegarth Jacob J Wong Hong-Nei HN Baker Justin N JN Ullrich Christina K CK

Journal of pain and symptom management 20201224 5

<h4>Context</h4>Children with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.<h4>Objective</h4>We conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in ...[more]

PMID: 33348034

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Project description:BACKGROUND:Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. OBJECTIVE:This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research. METHODS:We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ≤18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies. RESULTS:We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals. CONCLUSIONS:The strengths of the conclusions are limited by the studies' methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals. TRIAL REGISTRATION:PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky.

Project description:ImportanceEarly palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory.ObjectiveTo determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs.Design, setting, and participantsNovel but pretested survey tools were administered to 129 patient-parent dyads of hospital-based pediatric oncology ambulatory clinics and inpatient units between September 2011 and January 2015. All patient participants were aged between 10 and 17 years and were diagnosed as having an oncologic condition 1 month to 1 year before enrollment. Both the patient and the parent in the dyad spoke English, and all participating parents provided written informed consent. A convenience sample was used for selection, with participants screened when otherwise presenting at a participating site. A total of 280 eligible participants were approached for study inclusion, 258 of whom were enrolled in the study (92.1% positive response-rate).Main outcomes and measuresDegree of perceived suffering from early symptom-related causes, attitudes toward early palliative care integration, and patient-parent concordance. Statistical analysis included descriptive statistics, calculation of concordance, McNemar test results, and Cochran-Armitage trend test results.ResultsOf the 129 patients in the dyads, 68 were boys, and 61 girls; of the 129 parents, 15 were men, and 114 women. Patients reported the following symptoms in the first month of cancer therapy: nausea (n = 109; 84.5%), loss of appetite (n = 97; 75.2%), pain (n = 96; 74.4%), anxiety (n = 77; 59.7%), constipation (n = 69; 53.5%), depression (n = 64; 49.6%), and diarrhea (n = 52; 40.3%). A large proportion of those reporting suffering indicated substantial suffering severity from specific symptoms (ie, a great deal or a lot) including nausea, 52.3% (57 of 109), loss of appetite, 50.5% (49 of 97), constipation 30.4% (21 of 69), pain 30.2% (29 of 96), anxiety 28.6% (22 of 77), depression 28.1% (18 of 64), and diarrhea 23.1% (12 of 52). Few children and parents expressed opposition to early palliative care involvement (2 [1.6%] and 8 [6.2%]) or perceived any detrimental effects on their relationship with their oncologist (6 [4.7%] and 5 [3.9%]), loss of hope (3 [2.3%] and 10 [7.8%]), or therapy interference (3 [2.3%] and 2 [1.6%], respectively). Intradyad concordance was low overall: 26% to 29% for exact concordance and 40% to 69% for agreement within 1 response category. Significant differences in patient-parent attitudes toward aspects of early palliative care included child participants being more likely than their parents (40.3% [n = 52] vs 17.8% [n = 23]) to indicate that palliative care would have been helpful for treating their symptoms (P < .001).Conclusions and relevancePediatric oncology patients experience a high degree of symptom-related suffering early in cancer therapy, and very few patients or parents in this study expressed negative attitudes toward early palliative care. Our findings suggest that pediatric oncology patients and families might benefit from, and are not a barrier to, early palliative care integration in oncology.

Dataset Information

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.

Context

Objective

Methods

Results

Conclusion

Publications

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review.

Similar Datasets

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