Factors Contributing to Nursing Home Entry Among People With Multiple Sclerosis

PURPOSE: To describe the factors contributing to nursing home entry among people with multiple sclerosis (MS) from both quantitative and qualitative perspectives.

BACKGROUND: The progressive nature of MS often leads to increasing needs for physical assistance and care over time. For approximately 5%–10% of people with MS, these increasing needs may result in nursing home entry, which can be a highly restrictive living environment. Understanding differences in the patterns and experiences of health care use over time between people with MS who enter a nursing home and those who do not may provide critical insights to guide the development and delivery of interventions to prevent or delay transitions into nursing homes.

DESIGN: Sequential mixed-methods study using case-control analysis of existing health services administrative data and qualitative analysis data generated through focus groups.

PARTICIPANTS: All people with MS from the province of Manitoba were identified using existing administrative data between 1984 and 2012. From this pool, 226 cases were identified (nursing home entrant at any point since 2005). Cases were matched to 896 controls (not resident in a nursing home since 2005) by age, sex, geographic region, and date of first demyelinating disease claim. Qualitative data were generated from 36 people with MS (age range = 30–86) and 17 caregivers (age range = 51–79) recruited from four different communities across two Canadian provinces.

METHOD: Data for the case-control component of the study were drawn from population-based, deidentified administrative claims data that included five measures of health care use: ambulatory physician visits, prescription medication use, home care days, days in hospital, and resource-intensity weights of hospitalizations.

Qualitative data were gathered through seven focus groups of people with MS and their family caregivers. Several focus group questions sought participants’ perspectives on key findings from the case-control analysis.

ANALYSIS: Ten-year trajectories for each of the five measures of health care use were constructed. Key covariates were tested for their ability to predict membership in the trajectories. Focus group recordings were transcribed and then coded using open and axial techniques. Key themes were identified. Statistical and thematic findings were compared to elaborate understandings of nursing home entry among people with MS.

RESULTS: Statistical analyses indicate that the 10-yr trajectories of health care use among people with MS who enter a nursing home are different than those who do not for all five measures, even after adjusting for socioeconomic status, continuity of primary care, and comorbid conditions. Findings suggest that continuity of care may help to delay nursing home entry.

Qualitative findings suggest that limited or delayed access to some specific services (e.g., transportation, assistive technology), rigid criteria for accessing other services (e.g., home care), and the lack of reasonably priced alternative housing options play a major role in caregiver burn-out, which, in turn, contributes to nursing home entry of people with MS.

DISCUSSION: Use of mixed methods provided a broader and deeper understanding of the number and nature of factors contributing to nursing home entry among people with MS. Qualitative data uncovered issues that cannot be captured in most administrative data records.

IMPACT STATEMENT: Complex patterns of service use and need contribute to nursing home entry among people with MS. A multipronged approach may facilitate choice and control over living arrangements for people with MS as their care and support needs increase.