Nurturing Longitudinal Samples 2.0.

BACKGROUND: While longitudinal designs can provide significant advantages compared to single measurement/cross sectional designs, they require careful attention to study infrastructure and the risk of attrition among the sample over multiple time points. OBJECTIVE: The strategies used to design and manage an appropriate infrastructure for a longitudinal study and approaches to retain samples are explored using examples from 2 studies, a 25-year study of persons living with multiple sclerosis and a 10-year longitudinal follow-up of breast cancer survivors. RESULTS: Key strategies (developing appropriate infrastructure, minimizing costs to participants, and maximizing rewards of study participation) have helped address the serious threat of attrition in these longitudinal samples. CONCLUSION: Implementation of these strategies can help mitigate some of the disadvantages and leverage the strengths of longitudinal research to produce reliable, insightful, and impactful outcomes.

A randomized controlled trial of a cognitive rehabilitation intervention for persons with multiple sclerosis.

OBJECTIVE: To explore the feasibility and effects of a computer-assisted cognitive rehabilitation intervention - Memory, Attention, and Problem Solving Skills for Persons with Multiple Sclerosis (MAPSS-MS) - for persons with multiple sclerosis on cognitive performance, memory strategy use, self-efficacy for control of symptoms and neuropsychological competence in activities of daily living (ADL). DESIGN: A randomized controlled single-blinded trial with treatment and wait list control groups. SETTING: Southwestern United States. SUBJECTS: Convenience sample of 61 persons (34 treatment, 27 wait list control) with multiple sclerosis (mean age 47.9 years, SD 8.8). INTERVENTION: The eight-week MAPSS-MS intervention program included two components: (a) eight weekly group sessions focused on building efficacy for use of cognitive compensatory strategies and (b) a computer-assisted cognitive rehabilitation program with home-based training. OUTCOME MEASURES: A neuropsychological battery of performance tests comprising the Minimal Assessment of Cognitive Function in Multiple Sclerosis (MACFIMS) and self-report instruments (use of memory strategies, self-efficacy for control of multiple sclerosis and neuropsychological competence in ADL) were completed at baseline, two months (after classes), and at five months. RESULTS: Both groups improved significantly (P < 0.05) over time on most measures in the MACFIMS battery as well as the measures of strategy use and neuropsychological competence in ADL. There was a significant group-by-time interaction for scores on the measures of verbal memory and the use of compensatory strategies. CONCLUSIONS: The MAPSS-MS intervention was feasible and well-accepted by participants. Given the large relative increase in use of compensatory strategies by the intervention group, it holds promise for enhancing cognitive function in persons with multiple sclerosis.

A randomized controlled trial of a wellness intervention for women with fibromyalgia syndrome.

OBJECTIVE: To examine the effects of a wellness intervention, Lifestyle Counts, for women with fibromyalgia syndrome on the level of self-efficacy for health-promoting behaviours, health-promoting activity and perceived quality of life. DESIGN: A randomized controlled single-blinded trial with treatment and attention-control groups. SETTING: Community in the southwestern United States. SUBJECTS: Convenience sample of 187 women (98 treatment, 89 attention control) with fibromyalgia syndrome (mean age = 53.08 years, SD 9.86). INTERVENTION: The two-phase Lifestyle Counts intervention programme included lifestyle change classes for eight weeks, with goal-setting and telephone follow-up for three months. Participants in the attention-control group were offered an equivalent amount of contact in classes on general disease-related information and health education topics and unstructured follow-up phone calls. Participants were followed for a total of eight months after baseline. OUTCOME MEASURES: Self-report instruments measuring self-efficacy for health behaviours, health-promotion behaviours and health-related quality of life (SF-36 and the Fibromyalgia Impact Questionnaire) were completed at baseline, two months (after the classes), five months (after telephone follow-up) and at eight months. RESULTS: Both groups improved significantly (P<0.05) over time on the measures of self-efficacy, health behaviours, fibromyalgia impact and quality of life. There were significant group x time interactions for scores on the Health Promoting Lifestyle II subscales of physical activity and stress management. CONCLUSIONS: The Lifestyle Counts wellness intervention holds promise for improving health-promoting behaviours and quality of life of women with fibromyalgia syndrome.

Computer-assisted cognitive rehabilitation in persons with multiple sclerosis: Results of a multi-site randomized controlled trial with six month follow-up.

BACKGROUND: The effects of multiple sclerosis (MS) on cognition have gained increasing recognition as one of the major disabling symptoms of the disease. Despite the prevalence of these symptoms and their impact on quality of life, limited attention has been given to strategies that might help manage the cognitive changes commonly experienced by persons with MS. OBJECTIVE: The primary purpose of this study was to determine the effectiveness of a novel computer-assisted cognitive rehabilitation intervention MAPSS-MS (Memory, Attention, Problem Solving Skills in MS) in a multi-site trial with persons with MS. METHODS: Persons with MS (N = 183) with cognitive concerns were randomly assigned to either the 8-week MAPSS-MS intervention or usual care plus freely available computer games. Participants completed self-report and performance measures of cognitive functioning, compensatory strategies and depression at baseline, immediately after the MAPSS-MS intervention, and three and six months post-intervention. Changes in study outcomes were analyzed using intention to treat methodology, ANOVA with repeated measures, and ANCOVA. RESULTS: Both groups improved significantly on all outcome measures. The intervention group outperformed the comparison group on all measures, and there were statistically significant differences on selected measures. CONCLUSION: Findings suggest that MAPSS-MS is a feasible intervention that could be broadly implemented in community settings. It has been shown to be modestly successful in improving cognitive functioning.

Perceived Cognitive Deficits in a Sample of Persons Living With Multiple Sclerosis.

PURPOSE: The aims of this study were to describe the nature and diversity of perceived cognitive deficits using the Perceived Deficits Questionnaire (PDQ), to assess the reliability of the PDQ, and to explore self-reported predictors of PDQ scores in a large community-based sample of persons with multiple sclerosis (MS). MATERIALS AND METHODS: Persons with MS enrolled in a randomized controlled trial provided demographic data and completed the PDQ along with measures of cognitive and memory strategies, cognitive abilities, self-efficacy, and depressive symptoms and neuropsychological tests. RESULTS: Most of the 183 participants were non-Hispanic white women, approximately 49 years old, and diagnosed with MS 12.5 years prior. The most frequent cognitive complaints regarded trouble remembering telephone numbers, mind drifting, and forgetting why one came into a room. The PDQ scores were significantly related to self-rated cognitive abilities, depressive symptoms, self-efficacy, and use of cognitive strategies, but not to scores on neuropsychological performance tests. When controlling for other variables, self-rated cognitive abilities was the strongest, significant predictor of perceived cognitive deficits. CONCLUSION: Persons with MS most frequently experience deficits related to short-term memory and attention. The PDQ total is a reliable measure of perceived cognitive deficits in persons with MS, is feasible for use by nurses in clinical settings-can be administered in approximately 5 minutes, and is easily scored.

Selected health behaviors moderate the progression of functional limitations in persons with multiple sclerosis: Eleven years of annual follow-up.

BACKGROUND: Multiple sclerosis (MS), a chronic neurological disease typically diagnosed in young adulthood, presents with a wide variety of symptoms, impairments and functional limitations. Given the chronic, unpredictable and long-term nature of this disease, preserving function is essential. OBJECTIVE: The purpose of this study was to identify psychosocial and behavioral factors that might influence the trajectory of functional limitation through eleven years of longitudinal follow-up of a sample of persons with MS. METHODS: Participants (N = 606) completed measures of health behaviors, related constructs and functional limitations annually over eleven years. Longitudinal measures of functional limitations were analyzed using random-effects regression that allows for study of individual differences in the trajectories of a measure. Using the best fitting quadratic growth model, we tested the within and between-person effects of Nutrition, Interpersonal Relationships, Exercise, Stress Management, Health Responsibilities, Spiritual Growth, Self-rated Health and Barriers, controlling for Age, Year since Diagnosis and Year of Dropout, on Functional Limitations in the 11th year. RESULTS: After adjusting for covariates, higher mean scores for Exercise and Self-rated Health were related to lower levels of Functional Limitations in Year 11. Higher mean scores for Stress Management, Health Responsibilities and Barriers were related to higher levels of Functional Limitations in Year 11. Higher mean Exercise scores and lower mean Health Responsibilities scores were related to slower rates of progression of functional limitations in Year 11. CONCLUSION: Findings suggest that the highly variable trajectory of functional limitations in MS may be extended and shaped through health behavior strategies.

The use of individualized goal setting to facilitate behavior change in women with multiple sclerosis.

Setting goals is a useful strategy for changing behavior. The purpose of this study was to examine the effectiveness of a wellness intervention for women with multiple sclerosis (MS) on achieving health-related goals set individually by each participant in the experimental group (N = 57) using goal attainment scaling. The two-phase intervention included lifestyle-change classes over 8 weeks, then telephone follow-up over 3 months. Participants were followed over an 8-month period. Goal achievement was assessed at baseline, 2 months (following class), 3 1/2 months (6 weeks after class), 5 months (following 3 months of telephone follow-up), and at 8 months. The majority of the women met or exceeded all their individualized goals for changing behavior at the 6-week postclass assessment. Achievement and maintenance of individual goals remained high (59%-84%) over the 5 months after class follow-ups. These data support the positive effects of wellness interventions for helping women with MS to meet their own individualized health goals. Setting goals with incremental steps helped participants to articulate their individual goals and monitor achievement over time.

Reliability and Validity of PROMIS Cognitive Abilities and Cognitive Concerns Scales Among People with Multiple Sclerosis.

BACKGROUND: Cognitive impairment is among the most debilitating outcomes of multiple sclerosis (MS). Although several neuropsychological tests and self-report cognitive measures have been used to assess cognitive impairment, they may not be sensitive to change over time, or may not be feasible to administer in a clinical setting. The purpose of this study was to assess the reliability and validity of the 8-item PROMIS Cognitive Abilities and Cognitive Concerns Scales in a large community-based sample of people with MS. The PROMIS Cognitive Abilities and Cognitive Concerns Scales derive from the National Institutes of Health-funded Patient Reported Outcomes Measurement Information System (PROMIS), an item repository that capitalizes on recent psychometric advances to produce short, psychometrically sound health measures. METHODS: Mailed survey data were collected from 322 individuals recruited from two National Multiple Sclerosis Society chapters in a southwestern state. RESULTS: Both cognitive scales demonstrated high internal consistency reliability and were moderately correlated with self-reported depressive symptoms, self-efficacy, barriers to health promotion, health, and functional status (all correlation coefficients >0.35). In hierarchical regression analysis, the PROMIS Cognitive Concerns score added significant unique variance to the prediction of MS Incapacity Status after controlling for self-reported depressive symptoms, exercise, spiritual growth, and global health. Those who were unemployed owing to their disabilities had significantly lower PROMIS Cognitive Abilities scores and higher Cognitive Concerns scores than those who were working or those who were retired or not working for other reasons. CONCLUSIONS: The PROMIS Cognitive Abilities and Cognitive Concerns Scales are short, psychometrically sound measures that assess an important dimension of functioning and health for people with MS.

A double whammy: health promotion among cancer survivors with preexisting functional limitations.

PURPOSE/OBJECTIVES: To explore the experience of living with a preexisting functional disability and a cancer diagnosis and to identify strategies that promote health in the growing population of cancer survivors. RESEARCH APPROACH: Qualitative, descriptive. SETTING: Four sites in the United States. PARTICIPANTS: 19 female cancer survivors with preexisting disabling conditions. METHODOLOGIC APPROACH: Four focus groups were conducted. The group discussions were audio recorded and transcribed and analyzed using content analysis techniques. FINDINGS: Analytic categories included living with a cancer diagnosis, health-promotion strategies, and wellness program development for survivors with preexisting functional limitations. Participants described many challenges associated with managing a cancer diagnosis on top of living with a chronic disabling functional limitation. They identified strategies to maintain health and topics in health-promotion programs tailored for this unique group of cancer survivors. CONCLUSIONS: The "double whammy" of a cancer diagnosis for people with preexisting functional limitations requires modification of health-promotion strategies and programs to promote wellness in this group of cancer survivors. INTERPRETATION: Nurses and other healthcare providers must attend to patients' preexisting conditions as well as the challenges of the physical, emotional, social, and economic sequelae of a cancer diagnosis. KNOWLEDGE TRANSLATION: Cancer survivors with preexisting functional disabilities had difficulties finding cancer care providers who could manage their unique needs. That may be because some cancer-care providers are inadequately prepared to care for patients with cancer who have complex preexisting conditions. Cancer survivors with preexisting conditions may benefit from health-promotion programs that emphasize self-advocacy strategies, management of the economic impact of multiple diagnoses, and wellness activities adapted to their unique functional limitations.

A randomized clinical trial of a wellness intervention for women with multiple sclerosis.

OBJECTIVE: To examine the effects of a wellness intervention program for women with multiple sclerosis (MS) on health behaviors and quality of life (QOL). DESIGN: Randomized clinical trial. SETTING: Community setting in the southwestern United States. PARTICIPANTS: Convenience sample of 113 women with physician-confirmed MS (mean age, 45.79y). INTERVENTIONS: The 2-phase intervention program included lifestyle-change classes for 8 weeks, then telephone follow-up for 3 months. Participants were followed over an 8-month period. MAIN OUTCOME MEASURES: A series of self-report instruments to measure barriers, resources, self-efficacy for health behaviors, health promotion behaviors, and health-related QOL were completed at baseline, 2 months (after the classes), 5 months (after telephone follow-up), and at 8 months. Principal outcomes measures were health-promoting behaviors (scores on the Health Promoting Lifestyle Profile II) and QOL (scores on the Medical Outcomes Study 36-Item Short-Form Health Survey [SF-36] scales). RESULTS: Hierarchical linear modeling techniques revealed a statistically significant group by time effect for self-efficacy for health behaviors, health-promoting behaviors, and the mental health and pain scales of the SF-36. CONCLUSION: These data provide initial support for the positive effects of wellness interventions to improve health behaviors and selected dimensions of QOL for women with MS.