The meaning of health to persons aging with longstanding multiple sclerosis.

Understanding how persons aging with a chronic condition view their health is essential for planning and delivering person-centered care. The purpose of this study was to explore how persons aging with the chronic and disabling condition multiple sclerosis (MS) describe their health and how this has changed over time using data from Years 1 to 26 of an ongoing longitudinal survey study of health promotion and quality of life for persons with MS. The survey included measures of perceived meaning of health, self-rated health, health behaviors and quality of life outcomes. The sample included 168 persons with MS who returned the survey at Time 1 (1996) and again at Time 26 (2022). In 2022, participants had a mean age of 70.13 (SD = 8.19) and had been diagnosed with MS for an average of 34.47 years (SD = 6.27). Sixty percent of participants rated their overall health as good or excellent. Decreases in health self-ratings over time were not significant. Participants consistently agreed more strongly with items reflecting a wellness-oriented view of health than those reflecting a more clinical/biomedical model. At both time points, clinical definitions of health were negatively related and wellness definitions were positively related to reported frequency of health behaviors. Findings suggest that persons aging with the chronic condition of MS may be more responsive to health messages that emphasize function in daily living, carrying out normal responsibilities, and adjusting to changes in environment and demands. Patient or Public Contribution: Persons with MS provided study data, input on design, and construct measurement.

Development and Use of a Tech-Based Data Management System for a Cognitive Rehabilitation Randomized Controlled Trial for People With Type 2 Diabetes.

Successful technology-based interventions to improve patients' self-management are providing an incentive for researchers to develop and implement their own technology-based interventions. However, the literature lacks guidance on how to do this. In this article, we describe the electronic process with which we designed and implemented a technology-based data management system to implement a randomized controlled trial of a comprehensive cognitive rehabilitation intervention to improve cognitive function and diabetes self-management in people with type 2 diabetes. System development included feasibility assessment, interdisciplinary collaboration, design mapping, and use of institutionally and commercially available software. The resulting framework offers a template to support the development of technology-based interventions. Initial development may be time-consuming, but the benefits of the technology-based format surpass any drawbacks.

Longitudinal Effects of Sex, Aging, and Multiple Sclerosis Diagnosis on Function.

BACKGROUND: A gap in research about the trajectories of function among men and women aging with functional limitations because of multiple sclerosis (MS) hinders ability to plan for future needs. OBJECTIVES: Using a biopsychosocial model, we characterize how men and women with MS report changes over time in their function and test how person-level differences in age, diagnosis duration, and sex influence perceived function. METHODS: A longitudinal study with multiple waves of surveys was used to collect data on participant perceptions of function, as well as demographic and contextual variables. Self-reported functional limitation was measured over a decade. The study participants were community residing with physician-diagnosed MS. RESULTS: The people with MS had a diagnosis duration of about 13 years and were around 51 years of age, on average, at the start of the study. They were primarily women and non-Hispanic White. We analyzed the data using mixed-effects models. Subject-specific, functional limitation trajectories were described best with a quadratic growth model. Relative to men, women reported lower functional limitation and greater between-person variation and rates of acceleration in functional limitation scores. DISCUSSION: Results suggest function progressed through two pathways for over a decade, particularly closer to diagnoses. Variability in trajectories between individuals based on sex and years since diagnosis of disease indicates that men and women with MS may experience perceptions of their function with age differently. This has implications for clinician advice to men and women with MS.

Health Promotion, Functional Abilities, and Quality of Life Before and During COVID-19 in People With Multiple Sclerosis.

BACKGROUND: Because multiple sclerosis (MS) is an autoimmune disease and many individuals with MS take disease-modifying drugs that suppress immune response, serious concerns have been expressed about the potential effect of COVID-19 on those with this chronic condition. OBJECTIVES: The purpose of this research was to utilize the most recent 5 years of data from an ongoing longitudinal study of health promotion and quality of life (QoL) among people with long-standing MS to investigate changes across time in functional limitations, health promotion, and health-related QoL. METHODS: Participants are mailed an annual survey to complete about their health promotion, depressive symptoms, health status, social support, MS-related functional limitations, and QoL. Differences across time were analyzed with repeated measures of analysis of variances and planned contrasts. RESULTS: In 2021, the 141 participants had a mean age of 69 years and had been diagnosed with MS for 34 years, on average. Most had attended college, were married/partnered women, and reported adequate economic resources. Thirty-seven percent reported they were in poor to fair health. Physical activity and health responsibility scores decreased significantly during 2020-2021 compared with 2017-2019. Significant changes in depressive symptoms, social support, and functional limitation scores followed a different pattern, with the largest changes occurring between 2018 and 2019. QoL and other health promotion scores did not change significantly across time. DISCUSSION: The relatively small changes in health indicators revealed here suggest that older people with long-standing MS may have generally been able to maintain their health promotion, functional abilities, and QoL from before to during the COVID-19 pandemic. However, nurses and other providers should support them to resume their physical activity and regular provider contact as COVID-19 restrictions are eased. The patterns observed here demonstrate the importance of examining changes across an extended period, rather than simply looking at 1 year before and 1 year after a major event, such as COVID-19. These findings can help nurses understand how to help their patients with chronic health conditions maximize their health as they move forward.

Development and testing of a biobanking acceptability scale: A multistage effort to add a biobank to an existing longitudinal study.

BACKGROUND: More biobanks linked to demographic, phenotypic, and clinical data are needed to advance multiple sclerosis (MS) research; however, little is known about biobanking attitudes among persons with MS, broadly, as well as willingness of participants in an existing longitudinal study to donate biospecimens, specifically. METHODS: To assess biobanking attitudes in a cohort of MS patients in an ongoing longitudinal study, a new Biobanking Acceptability Scale (BAS) was developed, its reliability and predictive validity tested, and factors that influenced biobanking intent as well as behavior were explored. Analysis included descriptive statistics, factor analysis, Cronbach's α, and Pearson's bivariate correlation coefficients. RESULTS: In 2018, 227 participants completed the 10-item BAS. Biobanking attitudes were generally positive (BAS total score, M = 38.8 out of 50; SD = 6.7), and most participants expressed willingness to donate hair (87%), saliva (85%), and/or blood (72%). In 2019, 143 participants consented to biobanking and were mailed supplies; 110 individuals provided at least one biospecimen, resulting in 110 saliva samples and 89 hair samples. The 10-item BAS displayed good internal consistency (α = 0.81). Demographic and clinical variables were not significantly associated with BAS score nor actual donation. Total BAS score was related to consent (r = 0.36, p < .001) and to actual donation of hair or saliva samples (r = 0.24, p < .01). CONCLUSION: Overall, the participants had positive attitudes toward biobanking; the scale should be assessed in more diverse samples. The BAS predicted biobanking consent, and thus may be a useful measure to identify individuals most likely to donate biospecimens and/or identify potential barriers to biobanking that can be addressed through study design.

Moderator Effects in Intervention Studies.

BACKGROUND: Although nursing intervention studies typically focus on testing hypothesized differences between intervention and control groups, moderator variables can reveal for whom or under what circumstances an intervention may be most effective. OBJECTIVES: The aim of the study was to explain and illustrate moderator effects using data from a nursing intervention study to improve cognitive abilities in those with a chronic health condition. METHODS: The sample consisted of 178 individuals with multiple sclerosis participating in an experimental study of a cognitive intervention. General linear models were used for analyses. Interaction terms were created to represent moderator effects on three outcomes: self-reported cognitive abilities, use of memory strategies, and verbal memory performance. RESULTS: The Charlson comorbidity index significantly moderated the intervention effect on self-perceived cognitive abilities. Years of education significantly moderated the intervention effect on use of memory strategies. Scores on a general self-efficacy measure significantly moderated the intervention effect on the Controlled Verbal Learning Test-Second Edition. DISCUSSION: These analyses highlight the key role that moderator effects can play in nursing research. Although random assignment to groups can control potentially biasing effects of extraneous differences among individuals in intervention and control groups, those very differences may suggest fruitful avenues for hypothesis generating research about what works best for whom in intervention studies.

Targeting cognitive function: Development of a cognitive training intervention for diabetes.

AIM: The aim of this project was to develop and demonstrate the feasibility of a comprehensive cognitive training intervention to build self-efficacy for implementation of cognitive strategies in people with diabetes. BACKGROUND: People with diabetes are at greater risk than the general population for developing cognitive dysfunction. Some attention has been paid to the effect of cognitive impairments on diabetes self-management, but even when cognitive problems have been identified, few interventions have been tailored for those with diabetes. METHODS: The intervention combines in-person classes and home-based online computer training. Development, in 2017, included (a) adaptation of prior established, tested interventions; (b) interviews with stakeholders; and (c) integration of course content. RESULTS: Information provided by the stakeholders was used to modify an existing intervention to meet the needs of people with diabetes so that feasibility testing could occur. Despite initial difficulty with recruitment, the intervention was found to be feasible, and nineteen participants found it to be acceptable. CONCLUSION: This comprehensive cognitive training intervention targeting type 2 diabetes and cognitive dysfunction demonstrates that existing interventions can be adapted for use with people with diabetes.

An initial investigation of the reliability and validity of the Compensatory Cognitive Strategies Scale.

Although many cognitive performance tests and self-reported cognitive concerns scales have been used to evaluate cognitive functioning, fewer measures assess the use of compensatory cognitive strategies for daily activities among those experiencing mild levels of cognitive impairment. The Compensatory Cognitive Strategies Scale was developed to measure frequency of self-reported cognitive strategies to decrease distractions, organise and sequence activities, and to utilise newly available computer aids to assist memory among those with multiple sclerosis (MS). Cronbach's alpha, a measure of internal consistency reliability, was .89 and .90 in two different samples. Concurrent validity was supported by the total score's moderate correlation with the MMQ-Strategy Scale (rs = .67) and by a statistically significant increase in total scores for those who had participated in an intervention designed to improve their cognitive abilities. Correlations were stronger with another strategy measure than with measures of other constructs such as health-promoting behaviours, thus supporting the scales convergent versus divergent validity. These initial findings suggest that the Compensatory Cognitive Strategies Scale may be useful to both researchers and clinicians working to build compensatory strategies for day-to-day functioning among those with mild cognitive impairment.

Predicting Health Promotion and Quality of Life With Symptom Clusters and Social Supports Among Older Adults With Multiple Sclerosis.

Symptoms common among individuals with multiple sclerosis (MS) may influence health promotion and quality of life, especially among older adults, who often experience multiple chronic conditions. To identify and examine symptom clusters' effect on health promotion and quality of life, data from 215 adults with MS older than 60 (average years with diagnosis = 29) were analyzed. Correlations among symptoms ranged from 0.33 to 0.81. Factor analysis identified two symptom clusters: (a) physical/psychological/cognitive symptoms and (b) pain symptoms. In multiple hierarchical regressions, controlling for demographics and functional limitations, physical/psychological/cognitive symptoms significantly improved prediction on Health-Promoting Lifestyle Profile II interpersonal relations, stress management, and total scores; pain symptoms predicted nutrition scores. Both symptom clusters predicted spiritual growth and quality of life. Social support was a significant predictor of all outcomes. Symptom clusters, along with social support, should be considered in care and interventions for older adults with MS. [Journal of Gerontological Nursing, 43(10), 27-36.].

Low-Income Cancer Survivors' Use of Health-Promoting Behaviors.

This cross-sectional correlation study examined use of health-promoting (HP) behaviors and self-efficacy for engaging in HP behaviors. Participants reported higher HP behavior scores for health responsibility, interpersonal relationships, and spiritual growth, and lower scores for physical activity/exercise, nutrition, and stress management. Low physical activity, stress management, and nutrition scores suggest nurses can implement strategies that encourage use of these HP behaviors and enhance self-efficacy.

Evidence of compensatory neural hyperactivity in a subgroup of chemotherapy-treated breast cancer survivors and its association with brain aging.

Chemotherapy-related cognitive impairment (CRCI) remains poorly understood in terms of the mechanisms of cognitive decline. Neural hyperactivity has been reported on average in cancer survivors, but it is unclear which patients demonstrate this neurophenotype, limiting precision medicine in this population. We evaluated a retrospective sample of 80 breast cancer survivors and 80 non-cancer controls, age 35-73, for which we had previously identified and validated three data-driven, biological subgroups (biotypes) of CRCI. We measured neural activity using the z-normalized percent amplitude of fluctuation from resting state functional magnetic resonance imaging (MRI). We tested established, quantitative criteria to determine if hyperactivity can accurately be considered compensatory. We also calculated brain age gap by applying a previously validated algorithm to anatomic MRI. We found that neural activity differed across the three CRCI biotypes and controls (F = 13.5, p < 0.001), with Biotype 2 demonstrating significant hyperactivity compared to the other groups (p < 0.004, corrected), primarily in prefrontal regions. Alternatively, Biotypes 1 and 3 demonstrated significant hypoactivity (p < 0.02, corrected). Hyperactivity in Biotype 2 met several of the criteria to be considered compensatory. However, we also found a positive relationship between neural activity and brain age gap in these patients (r = 0.45, p = 0.042). Our results indicated that neural hyperactivity is specific to a subgroup of breast cancer survivors and, while it seems to support preserved cognitive function, it could also increase the risk of accelerated brain aging. These findings could inform future neuromodulatory interventions with respect to the risks and benefits of up or downregulation of neural activity.

Health promotion for cancer survivors: adaptation and implementation of an intervention.

Randomized control trial of a health promotion intervention was implemented for low-income cancer survivors. The majority of participants were female, older, divorced, educated, and unemployed or on disability leave. Findings indicate the health promotion intervention improved cancer survivors' self-efficacy and increased their use of health-promoting behaviors.

The role of cognitive rehabilitation in people with type 2 diabetes: A study protocol for a randomized controlled trial.

Today, the prevalence of cognitive dysfunction and the prevalence of diabetes are increasing. Research shows that diabetes increases cognitive impairment risk, and cognitive impairment makes diabetes self-management more challenging. Diabetes self-management, essential to good glycemic control, requires patients to assimilate knowledge about their complex disease and to engage in activities such as glucose self-monitoring and the management of their medications. To test a comprehensive cognitive rehabilitation intervention-the Memory, Attention, and Problem-Solving Skills for Persons with Diabetes (MAPSS-DM) program. Our central hypothesis is that participants who take part in the MAPSS-DM intervention will have improved memory and executive function, increased use of compensatory cognitive skills, and improved self-management. We will also explore the role of glucose variability in those changes. This is a randomized controlled trial. Sixty-six participants with cognitive concerns and type 2 diabetes will be assigned to either the full MAPSS-DM intervention or an active control. Participants will use continuous glucose monitoring pre- and post-intervention to identify changes in glycemic variability. All participants will also be evaluated systematically via questionnaires and neuropsychological tests at three timepoints: baseline, immediately post-intervention, and 3 months post-intervention. This study will fill an important gap by addressing cognitive function in the management of diabetes. Diabetes is related to accelerated cognitive aging, cognitive deficits are related to poorer self-management, and improvements in cognitive performance as a result of cognitive rehabilitation can translate into improved performance in everyday life and, potentially, diabetes self-management. The results of the proposed study will therefore potentially inform strategies to support cognitive function and diabetes self-management, as well as offer new mechanistic insights into cognitive function through the use of continuous glucose monitoring. Trial registration: This study has been registered at ClinicalTrials.gov (NCT04831775).

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 national internet survey on midlife women's attitudes toward physical activity.

BACKGROUND: Despite an increasing number of studies of midlife women's physical activity, little is known about how attitudes toward physical activity of midlife women from diverse ethnic groups influence the women's physical activity. OBJECTIVES: To explore ethnic differences in midlife women's attitudes toward physical activity and determine the relationships between the attitudes and their actual participation in physical activity while considering other influencing factors. METHODS: The Midlife Women's Attitudes Toward Physical Activity model was used to guide the study. This was a cross-sectional Internet survey study of 542 midlife women. The instruments included questions on background characteristics and health and menopausal status; the Physical Activity Assessment Inventory; a modified Barriers to Health Activities Scale; the Questions on Attitudes Toward Physical Activity, Subjective Norm, Perceived Behavioral Control, and Behavioral Intention; and the Kaiser Physical Activity Survey. The data were analyzed using ANOVA, correlation, hierarchical multiple regression, and path analyses. RESULTS: There were significant ethnic differences in the attitude scores (F = 2.58, p < .05), but no ethnic differences in the physical activity scores. Interestingly, there were significant ethnic differences in the occupational physical activity scores (F = 5.68, p < .01). Attitude scores accounted for 5% of total variances of the physical activity scores (F(ch) = 43.52, p < .01). The direct paths from the attitude scores (p < .01), the self-efficacy scores (p < .01), and the barrier scores (p < .05) to the physical activity scores were statistically significant. DISCUSSION: Ethnic differences in the women's attitudes toward physical activity need to be considered in promoting physical activity of midlife women.

A narrative study of women's early symptom experience of ischemic stroke.

BACKGROUND AND RESEARCH OBJECTIVE: Delayed arrival at the emergency department after the onset of ischemic stroke symptoms is an important reason for low tissue plasminogen activator administration rates. There is evidence that women arrive at the hospital later than do men, but little is known about women's experiences in the period between symptom onset and hospital arrival. The purpose of this naturalistic investigation using narrative methodology was to gain understanding of women's early symptom experience of ischemic stroke. SUBJECTS AND METHODS: The sample consisted of 9 women aged 24 to 86 years with an ischemic stroke within 1 year of diagnosis. Data were collected using in-depth interviews in which participants were asked to tell the story of their stroke from the moment they noticed the symptoms until they arrived at the hospital. Data were analyzed using sequential methods of narrative analysis. RESULTS AND CONCLUSIONS: The participants experienced stroke onset as the inability to carry out their accustomed activities in usual ways and as a process occurring over time rather than a discrete event. There was a tendency to objectify the body. Two participants considered stroke as a possible cause for their symptoms, and the other women attributed symptoms to everyday bodily experiences and/or other health conditions. Most participants did not perceive themselves at risk for stroke, although all but 1 woman had risk factors. For some women, stroke onset was different from their previous ideas about this event, and this was especially the case if a woman had prodromal symptoms. Decision making during early stroke flowed from women's evaluation of symptoms and the meaning of symptoms, and meaning was informed by a woman's life situation. The findings from this study may yield variables for future studies of cognitive, emotional, and behavioral predictors of hospital arrival time. There is a need for research on women's prodromal symptoms.

Breast cancer screening barriers and disability.

There is evidence that early detection from breast cancer screening is an effective means to reduce overall mortality from breast cancer. Findings from multiple research studies suggest that women with chronic disabling conditions are less likely to participate in breast cancer screening due to the multiple barriers they face. Barriers include those related to finances, environment, physical limitations, health carers' attitudes and lack of knowledge, and psychosocial issues. The purpose of this article is to provide an overview of the existing evidence of the barriers to breast cancer screening experienced by women with physical disabilities. Rehabilitation nurses that work with women who have chronic disabling conditions can be instrumental in eliminating these barriers to breast cancer screening through their efforts to promote health which is consistent with the philosophy of maximizing the health potential and quality of life of these women whose needs are often overlooked.

Patterns and Correlates of Physical Symptoms among People with Peripheral Neuropathy.

Background: As the population ages and more people are affected by multiple chronic conditions, the prevalence of Peripheral Neuropathy (PN) has also rapidly increased. This swift rise in PN leaves clinicians and patients challenged by a lack of consistent diagnosis and treatment guidelines. Purpose: To assist those affected by PN, it is imperative to understand the breadth of symptoms, experiences, and factors related to the quality of life. The primary aims of this study are to (1) characterize the symptoms of PN in a nationwide sample; (2) discern differences in symptom clusters, given perceived causes of PN; and (3) identify significant physiological symptoms related to the quality of life for people with PN. Methods: An online survey of people in online PN support groups. Participants were recruited primarily via an open request sent to recipients of web-based communications from nationally recognized online PN support groups. Inclusion criteria were as follows: Self-reported diagnosis of PN, ability to read English or Spanish, residence in the U.S., and age ≥ 18 years. Results: A total of 608 individuals with PN were included in the analysis. This sample represents 49 U.S. states and the District of Colombia; 221 were male and 387 female. Their disease severity and etiology were similar to previously reported information on this population, with 53.3% of respondents suffering from PN without a known cause. Among known causes, diabetes was the most common (19.6%), followed by chemotherapy (6.9%) and autoimmune diseases (3.6%). Factors affecting the quality of life among people with PN included lower extremity mobility, upper extremity mobility, sleep disturbance, depressive symptoms, and patient activation.

The meaning of gender while aging with paralytic polio.

The purpose of this article is to report the influence of gender on aging with childhood onset paralytic polio. The hermeneutic phenomenological exploration of gender was done using multiple qualitative interviews with 25 women, age 55 to 75 years of age, who had polio since before 14 years of age. We noted three themes: (a) the movement of her body, (b) integrating body and gender, and (c) gender discrepancies. Findings are discussed in the context of gendered expectations and the women's bodies.

Experiences of African American Women with Multiple Sclerosis.

BACKGROUND: Despite growing understanding that African American patients may have a more aggressive course of multiple sclerosis (MS) and experience disparities in diagnosis and treatment, fewer studies have examined how African Americans experience MS and its effect on their lives. This study explored the experiences of African American women with MS to inform future research and practice. METHODS: Face-to-face semistructured interviews were conducted with 19 African American women. Inductive content analysis was used to identify major categories and subcategories. RESULTS: The analyses yielded three major categories: no one could believe I had MS, it is tough living with MS, and you have to keep going. Many women reported that the MS diagnosis was a surprise to them and their doctors because of the common belief that MS is a "Caucasian disease." For this reason, many women felt their diagnosis had been delayed while their physicians initially focused on other diseases considered more typical in African American individuals. Living with losses related to social and family activities, independence, and employment was especially challenging for them. Faith in God, coming to grips with the diagnosis, and health promotion behaviors were key strategies for dealing with their MS. Women also spoke of pushing forward, working through MS challenges, and taking care of themselves, thus preserving their identity as strong Black women, a culturally important construct in the African American community. CONCLUSIONS: Future research should explore the interactions of culture with coping strategies and the development of useful and valued resources and supports for African American people with MS.