Multiple Sclerosis Adult Day Programs and Health-Related Quality of Life of Persons with Multiple Sclerosis and Informal Caregivers

Abstract

Background: Multiple Sclerosis Adult Day Programs (MSADPs) offer life-enhancing services for individuals and informal caregivers affected by MS. Specific services offered may include medical care, rehabilitation therapies, nutrition therapy, cognitive training, tailored education, exercise programs, and social interaction. The purpose of this study was to examine the effects of MSADPs on health-related quality of life (HRQOL) and health care utilization of persons with MS and HRQOL and well-being of informal caregivers. Methods: The study used a quasi-experimental design that compared the outcomes between a baseline and follow-up 1 year later of two groups: persons with MS and informal caregivers who used MSADP services and a comparison group of similar persons with MS and caregivers who did not use MSADP services. For persons with MS, outcomes included standardized measures of physical and mental HRQOL and health care utilization. For caregivers, outcomes included physical and mental HRQOL and well-being. Changes in outcomes between baseline and follow-up for the groups were examined using propensity score weighted difference-in-difference (DiD) regression analysis. Results: For persons with MS, MSADP use had a significant positive effect on SF-12 physical component scores, although the difference was not clinically meaningful. MSADP use did not have effects on any other outcomes for persons with MS or caregivers. Conclusions: MSADP use did not show a clinically meaningful impact on HRQOL for persons with MS or informal caregivers. MSADPs do not appear to offer sustained benefits to persons with MS or caregivers but the possibility of initial short-term benefits cannot be ruled out.

Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions

“…The Vasculitis PPRN rapidly conducted surveys using new data forms to study work disability [ 58 ], patients’ pathways to arriving at a diagnosis [ 59 ], and patient preferences for glucocorticoids and health-related quality of life among patients with vasculitis. IBD Partners implemented a new survey module to evaluate patient activation and learned that patients with higher levels of patient activation are more likely to be in remission [ 60 ], and iConquerMS has implemented targeted surveys for evaluation of: patient access to insurance; effectiveness of adult day care facilities; and attitudes to disease-modifying therapies and willingness to pay for them [ 18 , 61 , 62 ]. Each of these studies shows that new data elements can be added within the PPRN infrastructure at any time, and that prospective studies can be initiated quickly to address any number of research questions about autoimmune patient attitudes, behaviors, experiences, and preferences.…”

“…Patient centeredness is a defining feature of each PPRN, and participation is open to all eligible US and, in some cases, non-US patients, whether they reside in urban or rural communities, or are seen in academic or private practice settings. Studies often focus on types of data that help convey the patient experience using novel measures of quality of life (e.g., PROs) and activity (e.g., wearables, biosensors) [18][19][20][21][22]. As detailed in the next section, each PPRN is an enduring infrastructure with participant data that can be analyzed alone or in combination with other data, and with participants who can be contacted repeatedly (e.g., by e-mail, social media, or in-app messaging) to participate in any number of studies.…”

“…As detailed in the next section, each PPRN is an enduring infrastructure with participant data that can be analyzed alone or in combination with other data, and with participants who can be contacted repeatedly (e.g., by e-mail, social media, or in-app messaging) to participate in any number of studies. Patient-Powered Research Networks thus consist of "re-usable" infrastructures to improve research efficiency, and can provide data or facilitate data linkage that may be used flexibly for clinical, regulatory, administrative, or informatics aims [18][19][20][21][22]. Table 1 provides an overview of the PPRNs, including conditions of interest, common features, and opportunities for researchers and patients to propose collaboration.…”

Benefits of Multiple Sclerosis Adult Day Program Participation for People with Multiple Sclerosis

“…participants did not differ significantly from the comparison group on other measures of HRQOL, including pain, fatigue, and social support. 15 However, the results of the survey conducted in conjunction with this study demonstrate that participants thought that the MSADP provides opportunities for social connection, contributes to a positive mood, and helps with their physical functioning. Ninety-eight and onehalf (98.5) percent of respondents agreed or strongly agreed with the statement, "The program allows me to get out of the house or socialize with others."…”

“…Survey findings show that participants were highly satisfied with their experiences at MSADPs, while positive changes in self-reported health-related quality of life (HRQOL) over one year were not clinically meaningful. 15 The rationale for this study was to understand the discrepancy in the survey findings between participants' high satisfaction with MSADPs and the lack of self-reported positive health outcomes over the course of one-year participation. Why do participants regard MSADPs so highly, yet their responses to standard HRQOL scales suggest the programs are not useful for increasing social support, reducing depression and anxiety, and improving physical functioning over the course of a year?…”