Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers

Dalberg, Todd; McNinch, Neil L.; Friebert, Sarah

doi:10.1002/pbc.26996

Cited by 57 publications

(89 citation statements)

References 25 publications

(44 reference statements)

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Another study linked insufficient knowledge and low level of awareness of patients, families, the public, and HCPs to PC services and their benefits [60] to these challenges, potentially contributing to delayed referrals of patients to PC services [61][62][63]. Therefore, PC education has been recommended as the first step [64] to increase awareness, promote positive attitudes and improve knowledge about these services among the general public and HCPs [65][66][67]. This can be realised through integration of core competencies of PC into the curricula of universities [64,68] and cultivating more positive attitudes in the general public through the media or public engagement programmes.…”

Section: Discussionmentioning

confidence: 99%

Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews

2020

View full text Add to dashboard Cite

Background: Despite the significant benefits of palliative care (PC) services for cancer patients, multiple challenges hinder the provision of PC services for these patients. Low-and middle-income countries (LMICs) are witnessing a sharp growth in the burden of non-communicable diseases. There is a significant gap between demand and supply of PC in LMICs in current health services. This review aims to synthesise evidence from previous reviews and deliver a more comprehensive mapping of the existing literature about personal, system, policy, and organisational challenges and possible facilitators on the provision of PC services for cancer patients in LMICs. Methods: A systematic review of reviews was performed following PRISMA guidelines. PubMed, EMBASE, SCOPUS, PsycINFO, Web of Sciences, CINAHL, and Cochrane Library databases were searched to identify review papers published between 2000 and 2018 that considered challenges and possible facilitators to PC provision. A modified socioecological model was used as a framework for analysing and summarising findings. Results: Fourteen reviews were included. The reviews varied in terms of aim, settings, and detail of the challenges and possible facilitators. The main challenges of personal and health care systems included knowledge deficits and misunderstandings from patients, families, the general public, and health care providers about PC; and inadequate number of trained workforce. Besides, limited physical infrastructure, insufficient drugs for symptom relief and lack of a comprehensive national plan for implementing PC were the core organisational and policy level challenges that were recognised. Furthermore, the main possible facilitators that were identified included provision of adequate training for health care providers and health education for patients, families and the general public to enhance their knowledge, beliefs, and attitudes to PC. Finally, involvement of policymakers and making drugs available for symptom relief should also be in place to improve the health care systems. Conclusions: Understanding challenges to the provision of PC for people with cancer could help in the development of a PC pathway in LMICs. This knowledge could be used as a guide to develop an intervention programme to improve PC. Political influence and support are also required to ensure the sustainability and the provision of high-quality PC.

show abstract

Section: Discussionmentioning

confidence: 99%

Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews

2020

View full text Add to dashboard Cite

show abstract

“…Despite reported feelings of comfort in providing quality PC, parents of children with cancer often report high levels of suffering with inadequate pain control 12,32 . Pediatric oncologists also hold biases that affect PC provision 33 including the belief that good oncology care encompasses PC and that their patients had negative perceptions around the term “palliative care.” 23 However, the Center to Advance Palliative Care's (CAPC) national survey of patient families found that 70% of respondents were “not at all knowledgeable” about PC 34 . When parents were provided CAPC's preferred definition of PC, 86% stated they would be likely to consider PC for their child during cancer treatment 35 .…”

Section: Discussionmentioning

confidence: 99%

Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Ebelhar

Allen

DeGroote

et al. 2020

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Background Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown. Methods A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end‐of‐life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do‐not‐resuscitate status). A single‐center retrospective review was conducted on patients aged 0‐18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death. Results Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities. Conclusions Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end‐of‐life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.

show abstract

“…The limited exposure to targeted PC education in residency and fellowship means hospitals do not have staff with the training to meet the palliative needs of pediatric oncology patients . Improvements have been made to increase training opportunities as the number of pediatric PC fellowships in the US have doubled since 2013 . However, adequate workforce availability remains a priority to expand the number of institutions that can offer PC to children with cancer.…”

Section: Discussionmentioning

confidence: 99%

“…[42][43][44] Improvements have been made to increase training opportunities as the number of pediatric PC fellowships in the US have doubled since 2013. 45 However, adequate workforce availability remains a priority to expand the number of institutions that can offer PC to children with cancer.…”

Section: Discussionmentioning

confidence: 99%

Palliative care initiation in pediatric oncology patients: A systematic review

et al. 2018

View full text Add to dashboard Cite

Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline.

show abstract

Perceptions of barriers and facilitators to early integration of pediatric palliative care: A national survey of pediatric oncology providers

Cited by 57 publications

References 25 publications

Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews

Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews

Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Palliative care initiation in pediatric oncology patients: A systematic review

Contact Info

Product

Resources

About