22 research outputs found
Characteristics of Hospitalized Children With a Diagnosis of Malnutrition
Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/141004/1/jpen0623-sup-0001.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/141004/2/jpen0623.pd
Measuring quality of life in muscular dystrophy
OBJECTIVES: The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population.
METHODS: Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist.
RESULTS: The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model.
CONCLUSIONS: Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden
Effect of care management program structure on implementation: a normalization process theory analysis
Recommended from our members
The Intersection of Personal Assistance Services and Transition Outcomes in Neuromuscular Disease
Striking disparities exist in higher education and employment rates between young adults with disabilities and their non-disabled peers. This qualitative study examined the lived experiences of nine young adults ages 24-35 with neuromuscular disease and how their use of personal assistance services (PAS) impacted their pursuit of higher education and employment. Participants overall had positive college experiences and reported the easiest time coordinating PAS was during college. Families of participants expected college attendance, but the lack of experience with PAS prior to college impacted higher education; the need for PAS influenced choice of college. Participants used consumer-driven and agency based models, experienced great stress coordinating PAS, experienced low quality and high turnover of staff, were restricted in their ability to be spontaneous, and at times limited their needs to avoid asking for assistance. A significant amount of informal caregiving from family and friends was used to support higher education and employment. Participants speculated that societal stereotypes and low expectations of people with disabilities contribute to low rates of employment and higher education, and reported negative interactions with vocational rehabilitation counselors. Eligibility criteria for federal and state PAS programs limited income and created work disincentives, were complex to understand and navigate, and discouraged both advancement in their careers and the willingness to pursue advanced degrees. Young adults with neuromuscular disease are willing, wanting, and capable to participate in higher education and gainful employment and could not do so without access to reliable quality PAS. Efforts to prepare families and youth to fund and coordinate PAS, eliminate work disincentives, and coordinate transition planning between multiple support agencies could help break the cycle of poverty in the disability community and encourage employment
Recommended from our members
Quality improvement in neurology: Muscular dystrophy quality measures
The muscular dystrophies (MDs) are a heterogeneous group of genetically determined myopathies. Identification of underlying genetic defects has demonstrated that MDs exhibit significant phenotypic and genetic heterogeneity. One genetic mutation can lead to a variety of phenotypes while different genetic mutations can manifest similar phenotypes; therefore MDs are challenging to diagnose.
A major goal of health care reform in the United States is to replace the traditional fee-for-service model with a value-based system, which incentivizes high-quality care. Quality measurement is an integral and necessary part of this process.1,2 While standardizing care of MDs can be challenging because of their heterogeneity, common themes of management, such as the maintenance of nutrition, sustaining mobility, and management of complications, are applicable to many MDs. We report a quality measurement set for the management of MDs