Dataset Information

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

ABSTRACT:

Background

Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC).

Methods

Arksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published.

Results

Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions.

Conclusion

The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC.

Trial registration

Review registration: ( https://osf.io/yfch2/ ) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

SUBMITTER: Holmen H

PROVIDER: S-EPMC10557323 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

Holmen Heidi H Winger Anette A Steindal Simen A SA Riiser Kirsti K Castor Charlotte C Kvarme Lisbeth Gravdal LG Mariussen Kari L KL Lee Anja A

BMC palliative care 20231006 1

<h4>Background</h4>Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric pallia ...[more]

PMID: 37798706

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Project description:BackgroundPatient-reported outcome measures (PROMs) measure people's views of their health status whereas patient-reported experience measures (PREMs) are questionnaires measuring perceptions of their experience whilst receiving healthcare. PROMs/PREMs have the potential to enable children and young people (CYP) to be involved in decisions about their care and improve the quality of their care but it is not clear how often PROMs/PREMs are incorporated as part of standard care of CYP in the hospital setting. The aims of this scoping review were to understand the extent of the literature and map available evidence on the use, benefits, barriers and facilitators of PROMs/PREMs as part of standard care and treatment of CYP in hospitals.MethodsThe Joanna Briggs Institute review process was used to map existing evidence on the use of PROMs/PREMs in routine care of CYP in different hospital settings worldwide. Key search terms were developed and Ovid (Emcare, Embase MEDLINE, APA PsychInfo), Scopus and Web of Science were searched. Data were analysed using frequency counts and basic content analysis for thematic mapping according to the research questions. We undertook an initial search in February 2021 and updated this in April 2023.ResultsThe search yielded 68,004 studies, 388 were eligible for full text review and 172 met the inclusion criteria. PROMs were more commonly used than PREMs in routine care of CYP in hospitals; these were mostly collected using electronic collection and concentrated in specific specialities, settings, contexts and countries. The findings mapped the use of PROMs/PREMs, including how data are applied in clinical practice and used for service development, but this was not consistently reported. There are specific challenges in the implementation of PROMs/PREMs in routine care of CYP that need to be considered.ConclusionPROMs/PREMs have the potential to improve care for CYP in hospital settings contributing to different aspects of care. A better understanding of their use, how results can be applied in clinical practice and contribute to service development will enable meaningful employment. The popularity of electronically collected and captured PROMS/PREMs warrants further investigation to enable their meaningful use in routine care of CYP.Systematic review registrationNot pre-registered.

Project description:BackgroundRetinoblastoma is a childhood retinal cancer with lifelong consequences such as vision loss and increased risk of second cancer. Patient-reported outcome measures (PROMs) are instruments that measure outcomes related to health directly reported by patients. The purpose of this study was to determine the scope, characteristics and quality of PROMs used in retinoblastoma and related fields of pediatric ophthalmology and pediatric oncology.MethodsDatabases MEDLINE and Embase were searched for studies in the English language that reported on PROMs used in retinoblastoma, pediatric oncology, or pediatric ophthalmology; grey literature and studies reporting on developmental PROM phases were excluded. PROMs were grouped by the construct measured and domains assessed, and classified as condition-specific or generic. A subsequent search was then conducted in MEDLINE and Embase for studies assessing measurement properties of the identified PROMs. PROMs with associated studies were assessed for their methodologic quality using the COnsensus-based standard for the Selection of health Measurement INstruments (COSMIN) strategy.ResultsAmong 110 eligible studies uncovered by the database searches, 143 PROMs were identified: one retinoblastoma-specific, 56 ophthalmology- and 86 oncology-related. The most common construct measured was 'health-related quality of life' and the most common domain assessed was emotional well-being. Of the 143 PROMs, 100 had associated validation studies; the one retinoblastoma-specific PROM was not validated. Quality assessment revealed 34/100 PROMs received a score of sufficient quality in both subcategories of 'overall content validity'; 3/100 received a score of sufficient quality in both subcategories of 'internal structure'; 0/100 received a score of sufficient quality in all three subcategories of 'remaining measurement properties'. The Patient-Reported Outcome Measure Information System (PROMIS) Pediatric Profile-25 was the highest-scoring PROM identified, meeting COSMIN standards for 2/3 measurement property categories (and 5/7 subcategories). Eleven additional PROMs were identified which had sufficient scores in 1/3 measurement property categories (and 5/7 subcategories).ConclusionThe study identified several PROMs from the pediatric ophthalmology and pediatric oncology literature that could be relevant to the retinoblastoma population, but many have limits to their validation. Future development of a retinoblastoma-specific PROM, performed in partnership with retinoblastoma patients to support optimal content validity, could first focus on the selection and definition of the optimal construct to measure, followed potentially by adaptation and further validation of the relevant PROMs with strong methodologic quality identified in this study.

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Project description:BackgroundThe algorithmic patient preference predictor (PPP) has been proposed to aid in decision making for incapacitated patients in the absence of advanced directives. Ethical and legal challenges aside, multiple practical barriers exist for building a personalized PPP. Here, we examine previous work using machine learning to predict patient reported outcome measures (PROMs) for capacitated patients undergoing diverse procedures, therapies, and life events. Demonstrating robust performance in predicting PROMs for capacitated patients could suggest opportunities for developing a model tailored to incapacitated ones.MethodsWe performed a scoping review of PubMed, Embase, and Scopus using the PRISMA-ScR guidelines to capture studies using machine learning to predict PROMs following a medical event alongside qualitative studies exploring a theoretical PPP.ResultsSixty-eight studies used machine learning to evaluate PROMs; an additional 20 studies focused on a theoretical PPP. For PROMs, orthopedic surgeries (n = 33) and spinal surgeries (n = 12) were the most common medical event. Studies used demographic (n = 30), pre-event PROMs (n = 52), comorbidities (n = 29), social determinants of health (n = 30), and intraoperative variables (n = 124) as predictors. Thirty-four different PROMs were used as the target outcome. Evaluation metrics varied by task, but performance was overall poor to moderate for the best reported scores. In models that used feature importance, pre-event PROMs were the most predictive of post-event PROMs. Fairness assessments were rare (n = 6). These findings reinforce the necessity of the integrating patient values and preferences, beyond demographic factors, to improve the development of personalized PPP models for incapacitated patients.ConclusionThe primary objective of a PPP is to estimate patient-reported quality of life following an intervention. Use of machine learning to predict PROMs for capacitated patients introduces challenges and opportunities for building a personalized PPP for incapacitated patients without advanced directives.

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Dataset Information

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

Background

Methods

Results

Conclusion

Trial registration

Publications

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

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