Development of a new pregnancy informational and decisional needs survey for women with physical disabilities.
Claire Z Kalpakjian, Heidi J Haapala, Susan D Ernst and 7 others
PMID 33451968WHAT IT FOUND
A new survey helps clinicians understand what women with physical disabilities need when deciding about pregnancy.
It covers risks, support, and provider communication. It is a tool for gathering information, not a test that scores patients or proves an intervention works.
Key findings
01The final survey contains 114 items across six sections designed to assess decision-making needs and informational gaps.
02Women reported that the survey itself prompted them to reflect on their feelings and seek more information about pregnancy risks.
03Key information gaps identified included accessible examination tables, long-term effects of pregnancy, and alternatives to birth.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTs
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What it does not show
The study does not validate the survey as a diagnostic tool or outcome measure; it only establishes content validity and preliminary internal consistency. The sample was largely non-Hispanic Caucasian and well-educated, which may limit generalizability to other populations. The survey does not produce a single score, so it cannot be used to rank patients or track progress over time in a standardized way. Some items were difficult to interpret regarding 'not applicable' responses, suggesting the survey may need refinement for clinical use.
Declared interests
The study was supported by the National Institutes of Health (N.I.H., Extramural). No other conflicts of interest are reported.
The easy way to misread this
Do not treat this survey as a validated assessment tool that yields a clinical score. It is an exploratory instrument designed to gather qualitative and quantitative data on informational needs, not to diagnose decisional conflict or measure the effectiveness of an intervention.