Adults are just big children: What we can learn about quality end‐of‐life care from pediatrics

Bogetz, Jori F.; Rosenberg, Abby R.

doi:10.1002/cncr.33548

Cited by 3 publications

(6 citation statements)

References 21 publications

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“…What is feasible and pragmatic to measure does not necessarily equate with what is most important to key stakeholders. [37][38][39] Indeed, many highly prioritized quality measures for children with advanced cancer fall within the auspices of what is currently aspirational and not yet feasible in practice (Figure 1). An added wrench in quality measurement is that, depending on key stakeholder interests, what is viewed as a priority for achieving value-based care may greatly differ.…”

Section: Quality Measure Developmentmentioning

confidence: 99%

“…The divergence between our two sets of measures illustrates a tension in quality measurement between the pragmatic and the aspirational. What is feasible and pragmatic to measure does not necessarily equate with what is most important to key stakeholders 37–39 . Indeed, many highly prioritized quality measures for children with advanced cancer fall within the auspices of what is currently aspirational and not yet feasible in practice (Figure 1).…”

Section: Introductionmentioning

confidence: 99%

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Charting a path to high‐quality end‐of‐life care for children with cancer

Ananth

Wolfe

Johnston

2022

Cancer

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Section: Quality Measure Developmentmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Charting a path to high‐quality end‐of‐life care for children with cancer

Ananth

Wolfe

Johnston

2022

Cancer

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“…Although a set of quality measures exists for adults with advanced cancer, we previously found that quality measures for adults did not directly translate to the pediatric context owing to developmental considerations in children, the delicate balance of parent and child dyadic decision-making, and what families fundamentally value about advanced childhood cancer care . Hence, to optimize care value, there is an imminent need to establish end-of-life care quality measures that attend to the preferences and priorities of children with cancer and their families …”

Section: Introductionmentioning

confidence: 99%

“…4 Hence, to optimize care value, there is an imminent need to establish end-of-life care quality measures that attend to the preferences and priorities of children with cancer and their families. 13 In 2 previous studies, 4,6 we engaged stakeholders in defining and refining what constitutes high-quality end-of-life care for children with cancer. We thereby derived 28 candidate quality measures and narrowed these subsequently to a set of very important measures.…”

Section: Introductionmentioning

confidence: 99%

Parent Priorities in End-of-Life Care for Children With Cancer

et al. 2023

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ImportanceRobust quality measures to benchmark end-of-life care for children with cancer do not currently exist; 28 candidate patient-centered quality measures were previously developed.ObjectiveTo prioritize quality measures among parents who lost a child to cancer.Design, Setting, and ParticipantsThis survey study was conducted using an electronic, cross-sectional discrete choice experiment (DCE) with maximum difference scaling from January to June 2021 in the US. In each of 21 questions in the DCE, participants were presented with a set of 4 quality measures and were asked to select the most and least important measures within each set. All 28 quality measures were presented an equal number of times in different permutations. In the volunteer sample, 69 eligible bereaved parents enrolled in the study; 61 parents completed the DCE (participation rate, 88.4%).Main Outcomes and MeasuresUsing choices participants made, a hierarchical bayesian multinomial logistic regression was fit to derive mean importance scores with 95% credible intervals (95% Crs) for each quality measure, representing the overall probability of a quality measure being selected as most important. Importance scores were rescaled proportionally from 0 to 100, with the sum of scores for all quality measures adding up to 100. This enabled interpretation of scores as the relative importance of quality measures.ResultsParticipants included 61 bereaved parents (median [range] age, 48 [24-74] years; 55 individuals self-identified as women [90.2%]; 1 American Indian or Alaska Native [1.6%], 1 Asian [1.6%], 2 Black or African American [3.3%], 1 Native Hawaiian or Pacific Islander, and 58 White [91.8%]; 58 not Hispanic or Latinx [95.1%]). Highest-priority quality measures by mean importance score included having a child’s symptoms treated well (9.25 [95% Cr, 9.06-9.45]), feeling that a child’s needs were heard by the health care team (8.39 [95% Cr, 8.05-8.73]), and having a goal-concordant end-of-life experience (7.45 [95% Cr, 6.84-8.05]). Lowest-priority quality measures included avoiding chemotherapy (0.33 [95% Cr, 0.21-0.45]), provision of psychosocial support for parents (1.01 [95% Cr, 0.57-1.45]), and avoiding the intensive care unit (1.09 [95% Cr, 0.74-1.43]). Rank-ordering measures by mean importance revealed that symptom management was 9 times more important to parents than psychosocial support for themselves.Conclusions and RelevanceThis study found that bereaved parents prioritized end-of-life quality measures focused on symptom management and goal-concordant care while characterizing quality measures assessing their own psychosocial support and their child’s hospital resource use as substantially less important. These findings suggest that future research should explore innovative strategies to measure care attributes that matter most to families of children with advanced cancer.

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“…Differences in communication and decision making between adults and children at various developmental stages, distinct health insurance and reimbursement policies, and differential access to palliative and hospice services may render QMs for adults of limited applicability to children. 10 To address this knowledge gap, we previously engaged key stakeholders, including patients, parents, and health care professionals, to identify attributes of high-quality end-of-life care for children with cancer. 11 This study yielded 26 candidate patient-centered measures of high-quality care.…”

Section: Introductionmentioning

confidence: 99%

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

Ananth

Mun

Reffat

et al. 2022

JCO Oncology Practice

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PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.

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Adults are just big children: What we can learn about quality end‐of‐life care from pediatrics

Cited by 3 publications

References 21 publications

Charting a path to high‐quality end‐of‐life care for children with cancer

Charting a path to high‐quality end‐of‐life care for children with cancer

Parent Priorities in End-of-Life Care for Children With Cancer

Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer

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