Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations.
Tamiko Younge, Hailey Moore, Jessica D Thompkins and 1 others
PMID 40601301WHAT IT FOUND
Parents of children with rare diseases prioritized stability and quality of life over longevity or cure.
Only 20% wanted a cure, while 87% sought minimal change. Clinicians should ask about daily goals, not just resuscitation status.
Key findings
01Maintaining stability was the most prevalent goal, described by 87% of families, often viewed as a victory compared to disease progression.
02Only 20% of families articulated curing the disease as a goal, and those who did described it as unrealistic, while 47% prioritized reducing medical interventions.
03Families expressed non-medical goals such as being happy (60%) and moving the body (53%), which often took priority over medical concerns.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study was single-center and included only families with English-language proficiency, limiting generalizability. The sample included a limited number of fathers (1 interview with a father alone, 4 with both parents). Children were relatively stable and at home at the time of the study, which may explain the high priority on maintaining stability; goals might differ in acute or critical care settings. The study describes goals as articulated in a specific structured interview, which may not reflect spontaneous conversations.
Declared interests
The authors declared no potential conflicts of interest.
The easy way to misread this
Do not assume that parents of children with rare diseases prioritize life prolongation or cure. The study found that only 20% articulated curing the disease as a goal, while the majority prioritized stability and quality of life. Treating medical optimization as the default goal may misalign with family values.