AHRQ: Evidence is lacking for measuring quality in disabled

Little evidence is available to adequately assess measures for evaluating quality improvement outcomes among disabled people, according to a new report from the Agency for Healthcare Research and Quality.  

Quality of life, social functioning and other outcomes measures are essential to help assess the quality of care for people with physical, intellectual or developmental disabilities. Such measures are important because they can provide insight into how disabilities can influence ongoing medical conditions, treatment and follow-up care. However, no studies include disability as an underlying condition and also assess the outcomes of medical care for basic medical needs or secondary conditions in mixed populations of disabled and non-disabled participants. Research on disability as a comorbidity is at an early stage and could benefit from organized databases of critically assessed outcome measures, according to the lead author, Mary Butler, PhD, of the Minnesota Evidence-based Practice Center.

The scarcity of literature indicates the early stages of research in this area, according to the report. "The scarcity may also indicate a lack of awareness or unintentional systematic bias against examining disability as a complicating condition rather than the condition of interest itself, the legacy of an outdated separate-but-equal stance toward disabled populations."

The continuing presence of research “silos” remains a concern. Multidisciplinary research and coordination of efforts across researchers who focus on medical interventions to cure, on rehabilitation to restore function, and on supportive services for disabilities are crucial.

Ironically, researchers may actually contribute to a problem persistently faced by people with disabilities, which is that they suffer disparities in healthcare services while at the same time experiencing greater healthcare needs, according to the report. "Researchers contribute to this disparity through research designs and practices that either systematically exclude people with disabilities or incompletely capture the outcomes they value. Research silos contribute to this process, as do the context and environment within which researchers work."

The broad scope of the review was a useful endeavor because its findings underscored the need for coordination and collaboration among the three overarching approaches to studying outcomes—medical, rehabilitative and supportive services.