Longitudinal changes in quality of life and related psychosocial variables in australians with multiple sclerosis.

This study explored changes in quality of life (QOL) and psychosocial variables in a large cohort of people with multiple sclerosis (MS). A total of 1287 Australians with MS were administered self-report questionnaires at baseline and 24 months later to examine the impact of disease severity and duration, perceived stress, self-efficacy, depression, and social support on QOL and self-care. Over the 2-year survey period, MS remained stable for 70% of respondents. Disease severity correlated with social support at baseline but not at 24 months, when the only significant correlation with disease severity was that of the World Health Organization Quality of Life-100 instrument (WHOQOL-100) domain of Level of Independence. Although QOL improved across the WHOQOL-100 domains Physical, Psychological, Level of Independence, Social Relationships, and Environment, decreases were found in the WHOQOL-100 facet overall QOL and well-being as well as self-efficacy over the same time period. Hierarchical multiple regression was used to assess the utility of four control measures. MS disease severity and MS disease duration were entered at Step 1, explaining 16.1% of the variance in QOL. After entry of perceived stress, self-efficacy, social support, and the Depression, Anxiety and Stress Scale-21 (DASS-21) at Step 2, the total variance explained by the model as a whole was 55.8% (F6,1028 = 216.495, P < .001). Thus, even in the presence of stable disease and improvement in some WHOQOL-100 domains, overall QOL and self-efficacy had decreased at 2 years after the collection of baseline data. Loss of self-efficacy, increased stress, and depression are key factors in reduced QOL in people with MS.

Patients' and observers' perceptions of involvement differ. Validation study on inter-relating measures for shared decision making.

OBJECTIVE: Patient involvement into medical decisions as conceived in the shared decision making method (SDM) is essential in evidence based medicine. However, it is not conclusively evident how best to define, realize and evaluate involvement to enable patients making informed choices. We aimed at investigating the ability of four measures to indicate patient involvement. While use and reporting of these instruments might imply wide overlap regarding the addressed constructs this assumption seems questionable with respect to the diversity of the perspectives from which the assessments are administered. METHODS: The study investigated a nested cohort (N = 79) of a randomized trial evaluating a patient decision aid on immunotherapy for multiple sclerosis. Convergent validities were calculated between observer ratings of videotaped physician-patient consultations (OPTION) and patients' perceptions of the communication (Shared Decision Making Questionnaire, Control Preference Scale & Decisional Conflict Scale). RESULTS: OPTION reliability was high to excellent. Communication performance was low according to OPTION and high according to the three patient administered measures. No correlations were found between observer and patient judges, neither for means nor for single items. Patient report measures showed some moderate correlations. CONCLUSION: Existing SDM measures do not refer to a single construct. A gold standard is missing to decide whether any of these measures has the potential to indicate patient involvement. PRACTICE IMPLICATIONS: Pronounced heterogeneity of the underpinning constructs implies difficulties regarding the interpretation of existing evidence on the efficacy of SDM. Consideration of communication theory and basic definitions of SDM would recommend an inter-subjective focus of measurement. TRIAL REGISTRATION: Controlled-Trials.com ISRCTN25267500.

The motherhood choice: a decision aid for women with multiple sclerosis.

OBJECTIVE: This randomized controlled trial aimed to evaluate a decision aid for women with multiple sclerosis deciding whether to start or enlarge their families. METHOD: Decision aid materials were mailed to participants, and their response materials returned by mail. One-hundred and ninety-four women with MS agreed to participate and were randomized to receive the DA or not. Participants completed questionnaires measuring decisional-conflict, self-efficacy, knowledge, depression and anxiety as well as their views regarding having children pre- and post-intervention. RESULTS: Women who received the DA had a significant decrease in decisional-conflict, increase in self-efficacy and knowledge of MS and pregnancy and more certainty in their choice than those in the control group. There were no adverse effects on depression or anxiety and women's decisions were not biased in either direction. CONCLUSION: The DA is a useful tool that can be used by women with MS contemplating motherhood. PRACTICE IMPLICATIONS: This DA is used as a resource by the MS Society illustrating how DAs may help with lifestyle choices complicated by illness. It represents a tool adaptable to suit other illnesses where reproductive decision-making may be compromised and should be of interest to health-care professionals who are consulted by women with family-planning concerns.

Symptom change with exercise is a temporary phenomenon for people with multiple sclerosis.

OBJECTIVE: To determine the impact of a single exercise session on function, fatigue, and sensory symptoms for people with multiple sclerosis (MS). DESIGN: This pilot study was designed as a before-after trial. Demographic and response-to-exercise measures were taken before exercise, repeated immediately after exercise, and followed up again 24 hours later. SETTING: Three metropolitan centers of an MS society. PARTICIPANTS: A prospective sample of 34 subjects with MS who were referred for physiotherapy for an exercise program and who could attend an MS society center. INTERVENTIONS: Subjects performed an individually prescribed exercise session, which was at a commencement level and included strengthening, stretches, and fitness exercises. Subjects exercised for between 5 to 45 minutes (mean, 17.4 min) at an intensity of 7 to 17 (median, 12) on the Borg rating of perceived exertion (RPE) scale. MAIN OUTCOME MEASURES: All outcome measures were self-rated by subjects and included the Borg RPE scale, a questionnaire for sensory symptom description, and visual analog scales for rating of fatigue, function, and intensity of sensory symptoms. RESULTS: Subjective levels of fatigue and function immediately postexercise and 24 hours postexercise did not differ significantly from pre-exercise levels. However, over 40% of subjects experienced a temporary increase in number of sensory symptoms, 44% experienced an increase in the intensity of sensory symptoms, and 29% experienced an increase in both number and intensity immediately postexercise. CONCLUSIONS: This small study found that when people with MS undertake exercise at a commencement level, they can expect that sensory symptoms may change temporarily, but they are unlikely to have any deleterious changes in fatigue and function.

Becoming Proactive With the Whole-Grains Message.

Whole-grain foods have always been considered a healthy part of the diet. Only recently have epidemiologic and other data shown that whole grains have a role in preventing cardiovascular disease, diabetes, some types of cancer, and even obesity. What nearly all consumers and most health professionals fail to realize is that whole grains deliver as many if not more phytochemicals and antioxidants than do fruits and vegetables. Healthy People 2010 (DHHS) recommends 3 servings of whole grains per day. Because the average intake in the United States is less than 1 serving per day, health professionals must mount an active campaign to help consumers better understand the important health benefits of whole grains and work to increase their intake in the diet.

Posttraumatic stress disorder following diagnosis of multiple sclerosis.

The Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) recognizes life-threatening illness as a potential stressor that can precipitate posttraumatic stress disorder (PTSD). This study represents the first study of PTSD in the context of having a diagnosis of multiple sclerosis (MS). Fifty-eight MS patients were administered the Clinician Administered PTSD Scale, the Geriatric Depression Scale, and Disease Steps Questionnaire. Nine participants (16%) met symptom criteria for PTSD. In terms of those who satisfied the reexperiencing criterion, 75% of participants reported intrusions related to future-oriented concerns about their prognosis. These findings suggest that a significant proportion of MS patients experience PTSD-type reactions. These results are discussed in terms of the suitability of the PTSD framework to account for the distinctive nature of stress reactions secondary to life-threatening illness.

The importance of promoting a whole grain foods message.

Despite mention in the Dietary Guidelines for Healthy Americans and in Healthy People 2010, the lack of a coordinated campaign promoting whole grain foods and their health benefits may be contributing to low consumption. Fiber consumption in the U.S. likewise falls below recommended levels, in part, as a result of suboptimal intake of whole grain foods. Research findings suggest that whole grain is related to reduced disease risk, and that whole grain foods have relevant biological activity in humans. This necessitates a call to action to help Americans increase whole grain consumption as a strategy for health. The establishment of a whole grain coalition could promote increased consumption by developing consumer messages: partnering with health professionals: advocating whole grains to government agencies; seeking funding for scientific research and market research; and educating consumers, as well as health professionals, food manufacturers and millers, about the value and benefit of whole grains.