ABSTRACT
CONTEXT: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. OBJECTIVES: We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. METHODS: Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. RESULTS: From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including nine from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. CONCLUSION: PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Subject(s)
Hospice Care , Hospice and Palliative Care Nursing , Child , Humans , Palliative Care , Developing Countries , IncomeABSTRACT
Purpose: In recent decades, the survival outcomes among adolescent and young adults (AYAs, 15-39 years) have not improved substantially, especially among AYAs with primary central nervous system (CNS) tumors. While this is likely multifactorial, low participation in clinical trials among AYAs is thought to be a critical contributing factor. In this study, we describe the pattern of clinical trial enrollment among AYAs with primary CNS tumors at our institution. Methods: We performed a retrospective, IRB-approved chart review of AYAs with CNS tumors treated at the Dana-Farber Cancer Institute (DFCI) between January 2009 and December 2018. We used logistic regression analyses and descriptive statistics to analyze this sample and determine the clinical trial enrollment at the pediatric affiliate (Dana-Farber/Boston Children's Cancer and Blood Disorders Center) and adult affiliate (Dana-Farber/Brigham and Women's Cancer Center). Results: Ninety-three AYA patients with primary CNS tumors were treated at the Dana-Farber/Boston Children's Cancer and Blood Disorders Center, while 507 patients with primary CNS gliomas were treated at the Dana-Farber/Brigham and Women's Cancer Center. At the pediatric affiliate, 35.4% (33/93) of AYAs were enrolled in a therapeutic clinical trial, while at the adult affiliate, 15.8% (80/507) of AYAs were enrolled in a clinical trial. High-grade gliomas were associated with significantly higher rates of enrollment in the adult affiliate. Conclusions: Clinical trial enrollment remains poor among AYAs with CNS tumors, and clinical trial enrollment participation is modestly higher in the pediatric setting. Our study demonstrates the continued need to evaluate and address factors associated with clinical trial enrollment among AYAs with CNS tumors.
