Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Impact of secondary health conditions on social role participation for a long-term physical disability cohort.

For people living with long-term physical disability (LTPD) social participation may involve managing physical impairments and secondary health conditions (SHCs) that are not due to the pathophysiology of the LTPD diagnosis itself. Prior research found a negative relationship between SHCs and participation in social roles in people with spinal cord injury (SCI). We expand on this research by investigating the influence of SHCs on participation in social roles for people with one of four LTPDs, controlling for co-variates. We (1) evaluated the associations between SHCs and participation in social roles; and (2) determined whether SHCs on individuals' ability to participate in social roles varies by type of diagnosis in those aging with either SCI, muscular sclerosis, muscular dystrophy, or post-polio syndrome. Cross-sectional, secondary data analysis from a return-by-mail survey. N = 1,573. Data were analyzed with multiple linear regressions (hypothesis 1), and then three moderated regressions (hypothesis 2). After controlling for demographics, SHCs were associated with lower ability to participate in social roles and accounted for 48% of the variance (all p's <.001). The relationship between depression and social role participation was moderated by diagnosis, such that depression was more negatively associated with social participation among individuals with SCI (p = .020). Thus, SHC negatively impact participation in social roles.

Patient-identified impact of symptoms in spinal and bulbar muscular atrophy.

INTRODUCTION: The effects of spinal bulbar muscular atrophy (SBMA) on quality of life (QoL) are not well understood. This study describes symptoms from the patient's perspective and the impact these symptoms have on QoL. METHODS: We conducted open-ended interviews with 21 adult men with genetically confirmed SBMA. Using a qualitative framework technique, we coded and analyzed interviews to identify symptoms and resulting themes. RESULTS: From these interviews, 729 quotations were extracted. We identified 200 SBMA-specific symptoms and 20 symptomatic themes. Weakness was mentioned by all interviewees. Symptoms within the domain of mental health and the specific themes of emotional issues and psychological impact were also frequently mentioned. DISCUSSION: Numerous symptoms affect QoL for patients with SBMA. We identified previously unrecognized symptoms that are important to address in enhancing clinical care for patients with SBMA and in developing tools to evaluate efficacy in future clinical trials. Muscle Nerve 57: 40-44, 2018.

Effects of practice, visual loss, limb amputation, and disuse on motor imagery vividness.

BACKGROUND: The ability to generate vivid images of movements is variable across individuals and likely influenced by sensorimotor inputs. OBJECTIVES: The authors examined (1) the vividness of motor imagery in dancers and in persons with late blindness, with amputation or an immobilization of one lower limb; (2) the effects of prosthesis use on motor imagery; and (3) the temporal characteristics of motor imagery. METHODS: Eleven dancers, 10 persons with late blindness, 14 with amputation, 6 with immobilization, and 2 groups of age-matched healthy individuals (27 in control group A; 35 in control group B) participated. The Kinesthetic and Visual Imagery Questionnaire served to assess motor imagery vividness. Temporal characteristics were assessed with mental chronometry. RESULTS: The late blindness group and dance group displayed higher imagery scores than respective control groups. In the amputation and immobilization groups, imagery scores were lower on the affected side than the intact side and specifically for imagined foot movements. Imagery scores of the affected limb positively correlated with the time since walking with prosthesis. Movement times during imagination and execution (amputation and immobilization) were longer on the affected side than the intact side, but the temporal congruence between real and imagined movement times was similar to that in the control group. CONCLUSIONS: The mental representation of actions is highly modulated by imagery practice and motor activities. The ability to generate vivid images of movements can be specifically weakened by limb loss or disuse, but lack of movement does not affect the temporal characteristics of motor imagery.

[Treatment of patients with neuromuscular disease in a warm climate]. / Behandling i varmt klima for pasienter med nevromuskulaere sykdommer.

BACKGROUND: Several patient groups request treatment in a warm climate, in spite of the fact that the effects of such treatment are undocumented. MATERIAL AND METHODS: 47 children and 40 adults with neuromuscular diseases were recruited, stratified according to sex, use or non-use of electric wheelchair, primary myopathy or hereditary neuropathy, and randomised into two adult and two children groups. The patients were treated in a rehabilitation centre, either on Lanzarote or in Norway. All patients were monitored with physical tests and questionnaires at the start of the study, at the end of the treatment period, after three months (all groups) and after six months (adults only). RESULTS: No significant differences in effect between the groups were found. In the warm climate, the adult patient group showed a statistically significant improvement regarding pain, quality of life, depression, and results of physical tests at the end of treatment. After three months, the improvement in physical tests was still present. Among adult patients treated in Norway, improvement in physical tests was statistically significant after three months, but not at the end of the treatment period. INTERPRETATION: This study did not show a statistically significant difference between patients with various neuromuscular diseases treated in a warm climate compared to similar patients treated in Norway.