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

Author:

Ananth Prasanna12,Lindsay Meghan2,Mun Sophia3,McCollum Sarah1,Shabanova Veronika1,de Oliveira Sophia4,Pitafi Sarah5,Kirch Rebecca6,Ma Xiaomei27,Gross Cary P.28,Boyden Jackelyn Y.910,Feudtner Chris1011,Wolfe Joanne12

Affiliation:

1. Department of Pediatrics, Yale School of Medicine, New Haven, Connecticut

2. Yale Cancer Outcomes, Public Policy and Effectiveness Research Center, New Haven, Connecticut

3. Kaiser Permanente Washington Health Research Institute, Seattle

4. Yale University, New Haven, Connecticut

5. University College London, London, United Kingdom

6. National Patient Advocate Foundation, Washington, District of Columbia

7. Department of Chronic Disease Epidemiology, Yale School of Public Health, New Haven, Connecticut

8. Department of Internal Medicine, Yale School of Medicine, New Haven, Connecticut

9. Department of Family and Community Health, University of Pennsylvania School of Nursing, Philadelphia

10. Justin Michael Ingerman Center for Palliative Care, Children’s Hospital of Philadelphia, Philadelphia, Pennsylvania

11. Departments of Pediatrics, Medical Ethics, and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia

12. Department of Pediatrics, Massachusetts General Hospital, Harvard Medical School, Boston

Abstract

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.

Publisher

American Medical Association (AMA)

Subject

General Medicine

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