Symptom management top parent priority in end-of-life care for children with cancer
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Key takeaways:
- Symptom management for their children had ninefold greater importance to parents than psychosocial support for themselves.
- Lowest-priority quality measures included having their child avoid chemotherapy.
Bereaved parents prioritized satisfactory symptom management above all other aspects of end-of-life care for their children who died of cancer, study results showed.
The findings, published in JAMA Network Open, revealed the parents considered satisfactory symptom management of their dying child much more important than receiving psychosocial support for themselves, according to investigators.
“It’s not so much that parents are saying that psychosocial support is not important,” Prasanna Ananth, MD, MPH, assistant professor of pediatrics at Yale University School of Medicine, told Healio. “I think it’s instinctual not to place the oxygen mask on oneself before you place it on your child, metaphorically speaking.”
Background
Previous research has established a “very large set of quality measures” for younger patients with advanced cancer, according to Ananth.
The problem, she added, is that there are dozens of measures, and previous studies have not established which are the most important to the parents of younger patients with advanced illness.
The study’s discrete choice experiment approach borrows from the marketing world and has been increasingly used in the health care setting to determine preferences, Ananth said.
“Unfortunately, we’re not able to measure 20 to 50 different aspects of quality for every child that goes through this experience,” she said. “We wanted to know the highest priorities to measure, and it was really important for [us] to hear directly from parents with lived experience.”
Methodology
Ananth and colleagues conducted a survey study to help determine the importance of quality measures among parents who had a child die of cancer.
The researchers provided study participants with an electronic survey that used a cross-sectional discrete choice experiment design with maximum difference scaling between January and June 2021.
They recruited and enrolled a total of 69 U.S.-based parents via social media, with 61 (median age, 48 years; range, 24-74 years; 90.2% women; 91.8% white) completing the survey.
Researchers reported the findings as mean importance scores with 95% credible intervals (CRs).
Key findings
Results showed the highest priority quality measure reported by parents as having their child’s symptoms treated well (mean score, 9.25; 95% CR, 9.06-9.45), followed by a feeling that the health care team listened to their child’s needs (mean score, 8.39; 95% CR, 8.05-8.73) and having a goal-concordant end-of-life experience (mean score, 7.45; 95% CR, 6.84-8.05).
Parents’ lowest-priority quality measures included having their child avoid chemotherapy (mean score, 0.33; 95% CR, 0.21-0.45), providing psychosocial support for parents (mean score, 1.01; 95% CR, 0.57-1.45) and avoiding the need for their child to be admitted to the ICU (mean score, 1.09; 95% CR, 0.74-1.43).
“Measures in the domain of hospital resource use were ranked lower in importance overall,” the researchers wrote. “Rank-ordering measures by mean importance revealed that symptom management was nine times more important to parents than psychosocial support for themselves.”
Clinical implications
“In the acute timeframe before their child died, we found that parents placed a much higher priority on symptom relief and on the type of care that matches their family and child's goals and preferences,” Ananth told Healio. “Parents were consequently deprioritizing their own needs via psychosocial support or — interestingly — quality measures that had to do with hospital use.”
Ananth advised that clinicians recognize this priority and, in cases where a child is old enough, elicit both child and parent’s wishes and preferences for end-of-life care.
“[Clinicians] should try as best as they can to not approach advanced cancer care with preconceived notions about what good care means but to try to meet parents where they are and try to align the care that children receive with where a family's preferences are.”
For more information:
Prasanna Ananth, MD, MPH, can be reached at Yale School of Medicine, Department of Pediatrics, 330 Cedar St., LMP 2082C, New Haven, CT 06510; email: prasanna.ananth@yale.edu.
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