Children’s hospice palliative care (or pediatric hospice palliative care) is an active, holistic approach to care which focuses on relieving the physical, social, psychological, and spiritual suffering experienced by children and families who face a life-threatening condition, and helping them fulfill their physical, psychological, social, and spiritual goals.
To strengthen the evidence of the benefits of integrated pediatric hospice palliative care services, the effectiveness of these services must be addressed by demonstrating outcomes. Holmen and colleagues (2023) conducted a scoping review to provide an overview of patient-reported outcome measures (PROMs) relevant for children, adolescents, and young adults with life-limiting and/or life-threatening conditions eligible for pediatric hospice palliative care.
The scoping review used Arksey and O’Malley’s 6-stage framework, including: 1) identifying the research question; 2) identifying relevant studies; 3) study selection; 4) charting the data; 5) collating, summarizing and reporting the results; and 6) consultation.
Peer-reviewed and grey literature describing PROMs among children, adolescents, and young adults with diagnoses indicating a need for pediatric hospice palliative care were included, regardless of whether the patient was receiving palliative care. Additionally, studies based on proxy-reporting were included. All study designed were included.
A total of 2136 reports were identified and screened, 234 reports were read in full text and 98 reports presenting results of 89 studies were included in the review. Included studies were published between 2004 and 2021.
A total of 80 PROMs were found in the included studies. The most frequently measured outcomes were quality of life and overall physical and psychological symptoms, followed by pain and disease specific health-related quality of life. The full list of phenomena covered by the identified PROMs is available in the study.
The PROMs were administered in several ways, such as through paper-, interview-, tablet-, or computer-based methods at home or in the clinic through a webpage or by e-mail. PROMs were self-reported in 26 studies, by children–parent dyads in 32 studies and by proxy (parent or HCP) in nineteen studies. PROMs research in this population has focused on patients with cancer or organ failure living in high-income countries, mainly investigating physical phenomena.
A broad range of phenomena relevant to children, adolescents, and young adults eligible for pediatric hospice palliative care are covered by the PROMs identified in this scoping review. Future research should aim at exploring the usefulness of PROMs in children, adolescents, and young adults with other life-limiting and/or life-threatening conditions, including proxy-reported, patient- and family-centered outcomes.
Source: Holmen, H., Winger, A., Steindal, S. A., Riiser, K., Castor, C., Kvarme, L. G., … & Lee, A. (2023). Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review. BMC Palliative Care, 22(1), 148.