Exercise Perception and Behaviors in Individuals Living with Primary Immunodeficiency Disease.

BACKGROUND: Routine exercise has been established as an effective way to improve overall health. The value of exercise has been established in many diseases, however, there are no studies investigating the impact of exercise for individuals with primary immunodeficiency disease (PID). The purpose of this study was to investigate exercise perceptions and behaviors in individuals diagnosed with PID. METHODS: An online survey was distributed over a four-week period. RESULTS: Of the 264 responses collected, most were females, 45-54 years old. Respondents reported a measurable loss of function impairing their daily activities due to loss of mobility/physical activity (41.32%), or loss of lung/pulmonary function (40.08%,). They felt exercise decreased stress level and improved their mental well-being (46.25%). Some indicated they participate in exercise (33.20%), while 36.84% had not participated in exercise for at least 1 year. Exercise was limited primarily due to fatigue (86.97%). CONCLUSION: Exercise is important for those with chronic medical conditions. Most individuals living with PID can participate in low/moderate physical activity, but struggle with vigorous physical activity, since fatigue is the greatest barrier. Respondents view exercise as beneficial, and would like to increase participation in an exercise program.

Quality of life and self-reported lower extremity function in adults with HIV-related distal sensory polyneuropathy.

BACKGROUND: Distal sensory polyneuropathy (DSP) is a common complication of HIV disease. Its effects on quality of life (QOL) and function have not been well described. OBJECTIVE: The study objectives were: (1) to compare QOL and lower extremity function in people with HIV-related DSP and people with HIV disease who do not have DSP, (2) to determine the extent to which function predicts QOL, (3) to evaluate the agreement of 2 function scales, and (4) to describe the use of pain management resources. DESIGN: This was a cross-sectional survey study with predictive modeling and measurement tool concordant validation. METHODS: A demographic questionnaire, the Medical Outcomes Study HIV Health Survey, the Lower Extremity Functional Scale (LEFS), the Lower Limb Functional Index (LLFI), and a review of medical records were used. General linear modeling was used to assess group differences in QOL and the relationship between function and QOL. Bland-Altman procedures were used to assess the agreement of the LEFS and the LLFI. RESULTS: Usable data for analyses were available for 82 of the 94 participants enrolled. The 67% of participants who reported DSP symptoms tended to be older, had HIV disease longer, and were more likely to receive disability benefits. Participants without DSP had better LLFI, LEFS, and physical health summary scores. In multivariate models, lower limb function predicted physical and mental health summary scores. The LLFI identified participants with a lower level of function more often than the LEFS. Participants with DSP were more likely to use medical treatment, physical therapy, and complementary or alternative treatments. LIMITATIONS: A sample of convenience was used; the sample size resulted in a low power for the mental health summary score of the Medical Outcomes Study HIV Health Survey. CONCLUSIONS: Quality of life and function were more impaired in participants with HIV disease and DSP. The LLFI was more likely to capture limitations in function than the LEFS. Participants with DSP reported more frequent use of pain management resources.