Quality of life: Guidelines for the care of people with spina bifida.
Kathleen J Sawin, Timothy J Brei, Amy J Houtrow
PMID 33325410WHAT IT FOUND
Bowel incontinence and pain consistently lower quality of life in spina bifida, while physical function often does not.
Prioritize bowel program effectiveness and pain management. Use perception-based measures, not function-based tests, to avoid scoring disability as poor quality of life.
Key findings
01Bowel incontinence is consistently associated with lower health-related quality of life, and satisfaction with bowel programs is linked to higher quality of life.
02Pain is consistently related to reduced health-related quality of life across all ages and reporting methods.
03Many standard quality of life measures equate physical function with quality of life, which can devalue the lives of people with disabilities by automatically scoring them lower.
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 evidence base is described as preliminary and incomplete due to limited study designs and sample sizes. The search for quality of life articles was inadvertently omitted from the central search process and conducted separately by the first author, which may introduce bias or miss studies. Most evidence comes from older children, teens, and adults, leaving gaps for early childhood. The guidelines rely heavily on expert consensus for many recommendations due to a lack of rigorous trial data.
Declared interests
The text notes that the article was supported by the U.S. Government, P.H.S. No specific commercial conflicts of interest or funding sources for the guidelines themselves are detailed in the provided text.
The easy way to misread this
Do not interpret the lack of association between physical function and quality of life as evidence that physical therapy is ineffective. The review indicates that standard function-based measures may fail to capture quality of life accurately, not that functional improvements do not matter to patients.