Patient life aspirations in the context of Duchenne Muscular Dystrophy: a mixed-methods case-control study.

Background: Aspirations refer to wishes, ways of defining quality of life (QOL), and life goals. Living with chronic illness likely impacts a person's life aspirations. Duchenne Muscular Dystrophy (DMD) is an inherited disorder characterized by the inevitable and progressive loss of ambulation and independence.

Siblings' life aspirations in the context of Duchenne muscular dystrophy: a mixed-methods case-control study.

Background: The inevitable and progressive loss of independence in Duchenne Muscular Dystrophy (DMD) patients may have an impact on their siblings' life aspirations. The present cross-sectional case-control study investigated how aspirations differed between brothers and sisters of people with DMD and a stratified comparison group of nationally representative children/adults.

Methods: A web-based survey was administered October through December 2020.

If it's information, it's not "bias": a scoping review and proposed nomenclature for future response-shift research.

Background: The growth in response-shift methods has enabled a stronger empirical foundation to investigate response-shift phenomena in quality-of-life (QOL) research; but many of these methods utilize certain language in framing the research question(s) and interpreting results that treats response-shift effects as "bias," "noise," "nuisance," or otherwise warranting removal from the results rather than as information that matters. The present project will describe the various ways in which researchers have framed the questions for investigating response-shift issues and interpreted the findings, and will develop a nomenclature for such that highlights the important information about resilience reflected by response-shift findings.

Methods: A scoping review was done of the QOL and response-shift literature (n = 1100 articles) from 1963 to 2020.