Measuring the quality of life of people with profound multiple disabilities using the QOL-PMD: first results.
Health status and staffing level drive quality-of-life scores in people with profound multiple disabilities, so treat medical issues and boost staff ratios before blaming age or sensory limits.
01Research in Context
What this study did
Petry et al. (2009) tried out a brand-new form called QOL-PMD. The form asks staff to rate quality of life for people with profound multiple disabilities.
They used the form in real homes and day programs. Medical charts and staffing logs gave extra facts. The goal was to see which factors push scores up or down.
What they found
Clients with fewer medical problems earned higher quality-of-life scores. Places with more staff per client also scored higher.
Age, gender, and how well someone moves or sees did not move the needle. In short, health and staffing beat age and body limits.
How this fits with other research
Petry et al. (2009) ran a sister study the same year. That paper showed the form is reliable and valid. Together the two papers launch the QOL-PMD tool.
Spriggs et al. (2015) and Schmidt et al. (2010) looked at adults with intellectual disability. They found staff usually rate life lower than the adults themselves. This seems to clash with the target paper, but the adults in those studies could talk. The QOL-PMD is built for people who cannot speak, so proxy-only ratings are the only option.
Berástegui et al. (2021) also saw poor staff-youth agreement in transition-age students. They urge using both reporters when possible. For clients with profound multiple disabilities, the QOL-PMD keeps the proxy focus and adds medical and staffing checks the other papers missed.
Why it matters
When you write habilitation plans, list current medical issues first. Ask the nurse or doctor what can be eased. Next, check the staff ratio. Even one extra pair of hands can lift daily activities and scores. Finally, use the QOL-PMD each quarter to show that these fixes matter more than age or wheelchair use.
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02At a glance
03Original abstract
The present study focused on the objective components of quality of life (QOL) of people with profound multiple disabilities (PMD). More specific, we aimed at evaluating different dimensions of QOL of people with PMD and investigating the association between their QOL and several personal (age, gender, intellectual capabilities, motor limitations, sensory limitations, physical and mental health status) as well as setting characteristics (location of the setting, type of setting, size of the setting, group size, group composition, staffing level and staff turnover). As a measure of the QOL of people with PMD we used the QOL-PMD, a questionnaire that we specifically developed for this purpose. To measure the personal and setting characteristics we also used a self-developed questionnaire. Forty-nine people with PMD were selected. For each of these people three informants were chosen who each filled out the QOL-PMD. To account for the clustered nature of the data, data were analysed by means of mixed models. Characteristics regarding the medical condition of the person with PMD turned out to be most strongly associated with the QOL-PMD scores. Other personal characteristics such as age, gender, motor limitations and sensory limitations did not have a significant effect on the QOL-PMD scores. With regard to the setting characteristics, location of the setting and staffing level turned out to have a significant effect on the QOL-PMD scores.
Research in developmental disabilities, 2009 · doi:10.1016/j.ridd.2009.06.007