End‐of‐life care quality for children with cancer who receive palliative care

Ananth, Prasanna; Lindsay, Meghan; Nye, Russell T; Mun, Sophia; Feudtner, Chris; Wolfe, Joanne

doi:10.1002/pbc.29841

Cited by 8 publications

(3 citation statements)

References 56 publications

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Section: Discussionmentioning

confidence: 55%

“…Measurement of hospital resource use ranked low in priority for parents in our study, even though such measures are commonly used to assess population-level end-of-life care quality for individuals with cancer. 3,10,12,45,46 Other studies similarly found that families expressed ambivalence on measures of hospital use. 4,6 There may also be unintended consequences of predicating quality on hospital use measures given that many factors, including systemic racism, social determinants of health, and financial incentives for health systems to adhere to publicly reported measures, greatly impact the dynamics of end-of-life care.…”

Section: Jama Network Open | Pediatricsmentioning

confidence: 97%

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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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Section: Discussionmentioning

confidence: 55%

Section: Jama Network Open | Pediatricsmentioning

confidence: 97%

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

et al. 2023

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“…In this issue of Pediatric Blood & Cancer, Ananth et al report on the implementation of six quality measures in a multicenter, longitudinal cohort of childhood cancer decedents who received pediatric palliative care (PPC). 8 Four measures evaluated the limitation of specific intensive interventions in the last 30 days of life and a fifth measure assessed hospice enrollment at time of death, all considered higher quality care metrics. The presence of two or more highly distressing symptoms, a marker of poorer quality care, was also evaluated.…”

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confidence: 99%