Barriers to the Accessibility and Continuity of Health-Care Services in People with Multiple Sclerosis

Chiu, Chung-Yi; Bishop, Malachy; Pionke, JJ; Strauser, David R.; Santens, Ryan L

doi:10.7224/1537-2073.2016-016

Cited by 61 publications

(51 citation statements)

References 25 publications

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“…What must also be considered, where pre-existing services exist, is the ease of accessing services. In line with other studies [41,42] for many participants the sequelae of MS made it difficult to navigate the complexities of accessing care and support; for others it was feeling their needs were not important enough to be addressed by an already overstretched service.…”

Section: Discussionsupporting

confidence: 64%

“A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis

Freeman

Gorst

Gunn

et al. 2019

Disability and Rehabilitation

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Purpose: To gain insight into the experiences of, and potential solutions to, social isolation amongst severely impaired people with multiple sclerosis. Methods:A phenomenological research approach using face-to-face, in-depth semistructured, audio-recorded interviews. Data were transcribed and analysed thematically. Results:Sixteen severely impaired people with multiple sclerosis were interviewed (Expanded Disability Status Scale >6.5); aged 38 to 72 years, nine female, time since diagnosis ranged 4 -30 years). Four key themes were generated in line with the study objectives, each with further sub-themes. The themes were: 1) Definitions of isolation 2) Causes of isolation 3) lmpact of isolation and 4) Potential eases of isolation. Conclusions:Data portrayed social isolation as complex and multi-factorial in its definitions, its causes, and its impact. Isolation is not just about being lonely or left on one's own, but represents a spiral of impacts. Physical deterioration can lead to reduced choice and control regarding access to, and interaction with others and society, affecting personal identity. Sometimes this leads to further self-isolation. Personalised psychosocial support, with improved ease of access, focused on helping people with severe multiple sclerosis regain a sense of self and their place in the world may ease social isolation.

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Section: Discussionsupporting

confidence: 64%

“A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis

Freeman

Gorst

Gunn

et al. 2019

Disability and Rehabilitation

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“…28 Given the plethora of functional domains affected in patients with MS, a multidisciplinary care team, such as the one described in this paper, is needed in order to improve MS patients’ quality of life. 29…”

Section: Patients’ Perspectivementioning

confidence: 99%

The Multiple Sclerosis Care Unit

et al. 2018

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Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct management of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful.

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“…[35][36][37] For individuals with MS who use a wheelchair or scooter, access to suitable and affordable transportation options may limit physician visits despite actual need. 38 The literature supports this possibility for people with MS 39 and the broader population of people with mobility impairment. 40 Our data did not allow us to explore this possibility.…”

Section: Discussionmentioning

confidence: 90%

Ten-year trajectories of health care utilization by Manitobans with MS predict nursing home entry

et al. 2019

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BackgroundNursing home (NH) care is expensive and restrictive. Understanding trajectories to NH entry among people with multiple sclerosis (MS) could facilitate monitoring and early risk identification. We investigated 10-year trajectories of health care use in matched cohorts of people with MS who did and did not enter NH, the characteristics associated with trajectory group membership, and whether group membership predicted NH entry.MethodsWe used population-based administrative (health claims) data from Manitoba, Canada, to identify 226 NH entrants with MS between January 2005 and December 2012 and 896 age-, sex- and geographically matched non-NH entrants with MS. Using semiparametric group-based trajectory approaches, we described trajectories for 5 measures of health care utilization: physician visits, medications, hospital days and their intensity, and home care days. Using multivariable logistic models, we determined whether membership in a trajectory group predicted NH entry.ResultsMean (SD) age at MS diagnosis was 48.35 (13.25) years for NH entrants and 44.91 (11.58) for nonentrants. Most patients were female (NH entrant, 64%; nonentrant, 61%). Over the study period, trajectories for physician visits and medication use were relatively stable, while trajectories for hospital days and home care increased. High use trajectories for hospital days and medication use were associated with NH entry, while higher use of ambulatory physician visits was associated with a 40%–60% lower risk of NH entry.ConclusionComplex patterns of service use and underlying need contribute to NH entry among people with MS. An increasing number of hospital days is strongly associated with NH entry.

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Barriers to the Accessibility and Continuity of Health-Care Services in People with Multiple Sclerosis

Abstract: Background: Individuals with multiple sclerosis (MS) face a range of barriers to accessing and using health-care services. The aim of this review was to identify specific barriers to accessing and using healthcare services based on a continuum of the health-care delivery system.

Cited by 61 publications

References 25 publications

“A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis

“A non-person to the rest of the world”: experiences of social isolation amongst severely impaired people with multiple sclerosis

The Multiple Sclerosis Care Unit

Ten-year trajectories of health care utilization by Manitobans with MS predict nursing home entry

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