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Abstract
Introduction People with multiple sclerosis (MS) live with a progressive condition that can result in complex disability support needs. Consequently, they may require specialised care and assistive technology to maintain independence at home. It is essential to develop an understanding of the support needs and preferences of people with MS to maintain independence and enhance their quality of life.
Methods and analysis The principles of a systematic review framework are incorporated into our rapid review. As such, a reference group was recruited at the project’s outset, shaping the research question and study design, followed by developing a thorough listing of search terms. We then adapted the methodology in line with recommendations for conducting a rapid review whereby only three databases were included: MEDLINE (Ovid), Embase (Ovid) and PsycINFO (Ovid). Data from qualitative and mixed-method studies will be extracted, coded and classified using content analysis. In addition to including peer-reviewed articles, we will examine grey literature sourced from MS-specific organisations and research centres. Grey literature content that has the potential to inform practice will be extracted and categorised. Collectively, themes will be identified from the analysed literature, with a subsequent evaluation conducted by our reference group. The inclusion criteria assert that all documentation must be published in English from 2010 onwards, specifically focusing on people with MS.
Ethics and dissemination This rapid review does not require ethics approval. Findings will be circulated to our reference group and then published in peer-reviewed journals or presented at conferences.
- Health Services
- Multiple sclerosis
- Patient Participation
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STRENGTHS AND LIMITATIONS OF THIS STUDY
Combining a peer-reviewed article search with grey literature will capture broad, contemporary evidence by incorporating both academic research and industry insights.
Regular consultation with a reference group composed of people with lived experience will strengthen the relevance and accuracy of the findings.
A larger team involved in the search and data-extraction process will expedite completion.
The variation in team experience will be mitigated with lead researchers taking total oversight at each stage.
Introduction
Over 2.8 million people are currently living with multiple sclerosis (MS) globally, with an estimate that someone is diagnosed with MS every 5 minutes.1 MS is an incurable and progressive neurological condition, resulting in a wide range of physical, cognitive and psychological symptoms that can fluctuate and worsen over time.2 3 While some symptoms of MS are visible to others (eg, tremors, muscle spasms and speech difficulties), a vast number of symptoms are often invisible, such as fatigue, cognitive and psychological impairment, vision changes, pain, and bowel, bladder or sexual dysfunction.4 5 The varying range and severity of MS symptomatology will differ from person to person, highlighting the unpredictable nature of MS. Most people are initially diagnosed with relapsing-remitting MS (RRMS),6 which is characterised by periods of active disease followed by partial or complete recovery.7 Over time, a large proportion of this population will go on to develop secondary progressive MS (SPMS) that is characterised by increased levels of disability without periods of remission.8 A smaller proportion of people are diagnosed with primary progressive MS (PPMS) that is characterised by a progressive accumulation of functional impairment from the onset.8 Progressive forms of MS often result in an increased need for disability housing and support. Changing symptoms and disease progression can occur rapidly and without warning, resulting in people’s support requirements shifting suddenly and with limited time for preparation.
The rapid changes in MS symptomatology can substantially impact a person’s ability to engage in everyday life and undertake meaningful activities.4 This can range from having difficulties maintaining relationships with friends and family due to high levels of fatigue to reduced capabilities in completing activities of daily living, such as personal care and dressing.9 10 MS can have a detrimental effect on financial well-being. People with MS also report a significant strain in their employment outcomes (ie, less job retention or career progression) often due to physical, cognitive and communication difficulties.9 Often presenting in people aged between 20 and 40 years, broader economic implications also exist for MS, as evidenced by the increasing healthcare costs associated with the management of the disease over the lifespan.11 The increased cost in healthcare is, in part, driven by the inflated cost of accessing disease-modifying therapies and the indirect costs of lost wages.11 12 Using Australian figures, the estimated annual cost for people living with MS amounts to $73 457 (AU) per person, with previous estimates suggesting that people with MS themselves assume a fifth of this total.11 Taken together, this demonstrates the extensive healthcare needs and support provisions needed for optimal care for people living with MS.
With rising healthcare costs and evolving support needs, people with MS require tailored support across multiple domains.13 The MS International Federation identified key factors influencing quality of life, including physical and psychosocial health, infrastructure, financial resources and vocational opportunities.14 They have called for continuous improvements to help people with MS maintain independence, supported by global policies recognising the need for preference-based care.15 16 The World Health Assembly acknowledges the challenges faced by people with MS and has endorsed an action plan to improve health systems worldwide.17
This paper aims to synthesise local and international knowledge to better understand the support needs and preferences of people with MS in Australia. Drawing from global research, we seek to explore these needs within the Australian context. Introduced in 2013, the National Disability Insurance Scheme (NDIS) provides funding to people with disability, offering them choice and control over the support they require to lead independent lives and engage in community, social and economic participation.18 For people with MS, the NDIS has sought to deliver transformative outcomes, particularly in improving social and community participation, as well as enhancing choice and control.19 Despite this funding scheme, access to appropriate, affordable housing and implementation of necessary supports can remain suboptimal.20 21 This can result in extended hospitalisations or admission to residential aged care for people with MS, even if aged under 65.22
Although there is an emerging evidence base highlighting the benefits of personalised housing and support for people with disability and complex needs (eg, Douglas et al),23 there is limited research in Australia investigating the support needs and preferences of people with MS whose disability support needs can differ substantially from those with a nonprogressive disability (eg, stroke, intellectual disability or traumatic brain injury). A rapid review will be conducted to identify common barriers and facilitators and how this can be applied in the Australian context. This rapid review will analyse global literature to identify barriers and facilitators relevant to the Australian context, focusing on systematic, environmental and financial challenges faced by people with MS. Understanding these needs and preferences can guide policy and funding decisions, supporting more sustainable solutions. This is particularly timely given the current policy environment in Australia where supports provided by the NDIS are being reviewed.24 By exploring perspectives from people with MS, their close others and healthcare professionals, this study aims to inform strategies that maximise support options and promote independence.
Methods and analysis
A rapid review methodology informed by Garritty et al25 will report on the current evidence of support needs and preferences of people with MS. This review will include published peer-reviewed studies and grey literature. A rapid review approach was chosen as it allows for the timely collation of evidence to address urgent health-related research questions and decisions required to inform stakeholders without compromising methodological standards and quality.25 26 Knowledge users,25 including our funding body, MS Australia, will receive the results in a compressed timeframe; however, it is acknowledged that accelerated processes have limitations. With fewer peer-reviewed databases and grey literature search engines used and narrow inclusion criteria, there is a possibility that some studies will be undetected or that findings may contain reduced accuracy.27 Despite these limitations, there is an urgent need to collate and distribute existing global literature that has the potential to inform best practice. With the NDIS processes and proposed changes currently under review24 and with a call for industry submissions, we have a unique window of opportunity to provide knowledge users with essential evidence to influence and enact changes necessary to address unmet needs among the MS population.
To ensure rigour, we will use Garritty et al’s25 guidance on incorporating stakeholder consultation throughout the process, selecting preferred databases and implementing quality controls. Our underlying framework will be organised according to Arksey and O’Malley’s28 framework: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarising and reporting of results and (6) consultation. We acknowledge the iterative nature of reviews and will adopt Levac et al’s29 process techniques, including regular, clear communication between the review team during study selection and data extraction, making amendments where necessary.
At the commencement of our process, we established a newly formed reference group, many of whom are both knowledge users and providers. We aimed to achieve balanced representation and therefore recruited people with lived experience and professionals with MS-specific expertise. Representation included people with MS, close others, MS-related health professionals and MS researchers. Reference group members volunteered in response to an Expression of Interest request. As per Garritty et al’s25 recommendations, we sought their input to verify the need for this research, review the research question and refine our focus. This group also informed us of our eligibility criteria and search process. Their expertise, through lived experience or immersion in the field of research, will assist in verifying the results and offer insights into the applicability of global findings in the Australian context. They will be consulted throughout this rapid review process, and their guidance will be incorporated. The final results and discussion will identify the remaining literature gaps confirmed by the reference group. The expected timeframe for this review is from December 2024 to May 2025.
Peer-reviewed articles and grey literature will be incorporated into this rapid review. All variations in search strategies will be distinctly outlined.
Identifying the research question
This rapid review aims to collate and analyse currently available peer-reviewed and grey literature that examines the support needs and preferences of people with MS. The overarching research question is: What are the support needs and preferences for people with multiple sclerosis?
Identifying relevant studies
The authors of the review, in consultation with an experienced research librarian and the reference group, developed the search strategy. As per Garritty et al’s25(p6) advice, we will search a minimum of two databases. We will trial our search terms with MEDLINE (Ovid) and make any necessary adjustments before using Embase (Ovid) and PsycINFO (Ovid).
Search terms are informed by the population, concept, including outcomes, and context. Numerous terms have been used to cover all variances of the inclusion criteria (please refer to the supplementary file for a full list of terms used) (online supplemental file 1). We will adapt the search terms to accommodate the different databases where appropriate. Medical subject headings (MeSH) will be used for ‘MS’ as well as proximity searching and truncation.30 We will use Boolean operators30 to link the population with the concept, including proposed outcomes and context.
Supplemental material
Supplementary search techniques
Additional searches will be conducted through the following processes: citation and reference searches, hand searching within relevant peer-reviewed journals, and Google Scholar as an additional search engine to locate alternate peer-reviewed articles. These processes will allow the reviewers to identify relevant articles that may not be located through the initial database search.31 32
A comprehensive forward and backward search of all included articles will be completed to screen for additional references that meet eligibility. This will involve thoroughly searching the reference list of all included full-text articles. Scopus and Google Scholar will be used to retrieve articles located through the manual reference search33 and to identify and review citations for all articles. Forward and backward citations that pass the title screening stage will progress to abstract and full-text review.
Based on the search results and the emergence of prominent journals, resultant journals will be searched based on using our search terms through their advanced search tools. Such hand searching captures journal articles that may not have been located through database searches, are not indexed in our selected databases and may include very recent studies.32
A Google Scholar search for peer-reviewed articles will be incorporated. Search terms will be refined to accommodate the limits of the search engine (see box 1). The inclusion and exclusion criteria will apply as per the initial search strategy. It is acknowledged that the results produced by Google Scholar are less replicable due to the search being impacted by ‘algorithms and the individual’s search history and location’.31(p80) To limit the impact of these factors, a search will be conducted in Google Scholar via an incognito tab34 by one reviewer, who will enter key search terms in segments and record the first 50 results35 of each search string. Eligible articles aligned with the research question will be downloaded and shared for a second review. Those that are approved will be included in the data extraction.
Search terms and strings used in supplementary search techniques
Search strings
“multiple sclerosis” AND **
“home” OR “support” OR “housing” OR “assistive technology” **
“residential” OR “aged care” OR “group home” OR “home care services”
“NDIS” OR “independent living” OR “assisted living” OR “transitional care”
“home modification” OR “equipment” OR “home design” OR “in-patient care”
*Grey literature search strings
Grey literature
To conduct a thorough grey literature search, we will adopt guidance from Adams et al’s36 12-point decision-making aid. By setting clear inclusion criteria (see table 1) and search guidelines, we aim to identify, select and evaluate grey literature with an alternative narrative supporting peer-reviewed literature and providing valuable insights.36 Grey literature will be confined to industry reports, submissions to governments and resource guides providing specific recommendations for support needs. Our focus during the evaluation will be on content with the potential to inform practice. To ensure the reliability and relevance of the sources, grey literature will be generated or commissioned by authoritative or reputable MS-specific NGOs, research centres and government advisory bodies. Quality control measures will draw from Adams et al’s36 recommended process of devising specific criteria designed in accordance with the research aims. As such, (1) authoritative sources and (2) the presence of recommendations for MS populations are essential to form the basis of our critical appraisal.
Grey literature inclusion and exclusion criteria
The grey literature search will involve two main approaches: an Advanced Google search and a targeted website search. As per Chandna et al,37 formal grey databases will not be included because they are unlikely to produce additional publications emanating from MS-specific authoritative sources, and we are time-bound. The search will encompass the timeframe between 2010 and 2024. As per Cullerton et al,35 we will use just one search engine. Adopting further advice by Cullerton et al,35 we will create parameters for the Advanced Google search, including a PDF format filter and prioritising the highest-ranking unsponsored results. An incognito tab34 and the first 50 results35 will be sourced. Two separate searches will be conducted, one with Australia as a location filter and one with no location setting to mitigate bias. Initially, one reviewer will input search terms (see box 1, rows 1 and 2) and use the inclusion criteria. Subsequently, a second reviewer will screen and review the saved links to determine their relevance to the research question.
Additionally, the targeted website search will follow the systematic searching method proposed by Godin et al38 This approach will focus on organisations recommended by content experts located within our reference group and specifically target five MS Society websites within Australia. As per Chandna et al’s37 recommendation to reduce location bias, prominent overseas MS Society websites will also be searched. The same refined search terms used in the Advanced Google search will be used, concentrating on published materials in PDF format located through the website search tool or its publication listings.
The continuous approach to refinement in the grey literature search will form an iterative process that will help us ensure the precision and relevance of the gathered grey literature.
Study selection
Eligibility criteria
To be eligible for inclusion, studies must be peer-reviewed, have primary extractable research data from either the perspective of people with MS, their close others and/or healthcare professionals, written in English language and published from 2010 onwards (see table 2). We acknowledge the potential bias in limiting the language to English and restricting the dates; however, these parameters will allow us to streamline our process, thus addressing our time limitation to conduct this review.39 This 2010–2024 date range encompasses the evolution of disability funding in Australia, including the establishment of the NDIS. From a global perspective, this timeframe encapsulates change emanating from the United Nations Convention on the Rights of Persons with Disabilities.16 Earlier studies, while valuable for historical context, may not adequately address the shifts in societal attitudes, funding models and care priorities that have occurred in the past decade. Only qualitative studies or mixed-methods studies with qualitative data will be eligible for inclusion, as this type of data enables greater insight into the lived experience of people with MS and their support needs and preferences. Other literature, such as opinion pieces, protocols, book chapters, systematic reviews and conference papers, will be excluded based on lacking primary data or not meeting peer-review standards.
Database inclusion and exclusion criteria
Inclusion criteria
Population: people living with MS, their close others or healthcare professionals. There will be no limit on age, the severity of the condition or functional capacity, living conditions or geographical location and will be inclusive of international populations.
Concept: studies that report on concepts related to support. Supports are identified services, equipment, support workers, community nursing, in-home care, out-patient supports, support groups (peers and community) and specific information needed or provided. Additionally, we will include studies that discuss funding.
Outcome: articles that specifically addressed our interest in discerning outcomes related to individuals with MS (ie, related to support needs and preferences). These outcomes will encompass studies revealing the essential concepts that hold significance for people with MS, the rationale behind their importance or the potential implications for enhancing their quality of life.
Context: studies will not be constrained by geographic location. Our primary emphasis is on the home environment, thereby excluding studies that specifically address residing in healthcare settings.
Exclusion criteria
Given the purpose of the review is on the support needs and preferences of people with MS, any papers that do not have the majority of the sample as people with MS or have substantial evidence focusing on care needs, assistive technology or any other mentions of support outside of the context of a home or community environment will be excluded (eg, mobility support aids at an in-patient rehabilitation centre). Grey literature will be excluded from the peer-reviewed article database search; however, any relevant documentation identified will be filed for consideration in the separate grey literature process.
Screening
The full set of results retrieved from the database search will be stored in EndNote and imported to Covidence. Covidence is a web-based platform designed to streamline the process of conducting advanced reviews, enabling the screening process to be more efficient and easily tracked. First, the duplicate citations will be automatically removed by Covidence. Two review team members will then independently screen all remaining titles and abstracts. Using the Covidence feature, all results will receive a yes or no vote. Conflicts will be resolved through agreement by the two reviewers and escalated to a design team member if an agreement cannot be reached. If an article remains in doubt, it will advance to a full-text review.
The full-text screening will adopt a similar process via Covidence; however, a designated exclusion reason will be assigned by each independent reviewer, and a member of the study design team will resolve conflicts. Recorded reasons for exclusion will be exported to Excel, and any additional articles retrieved from supplementary searches will be subject to the same process. All papers identified through supplementary searching will follow the same abstract and full-text screening procedures. As Levac et al29(p4) advised, the review team will regularly consult to establish if the search strategy needs refinements and to ‘discuss challenges and uncertainties related to study selection’. All decisions made at various time points will be documented. We will use Tricco et al’s40 PRISMA-ScR checklist, and data will be represented in a PRISMA-ScR flow diagram providing numerical detail for the databases, documents screened and final inclusions plus reasons for exclusions.
Charting the data
An Excel data extraction tool will be developed in advance, and we will adopt an iterative refinement process for the nominated variables to ensure the research question is addressed 29(p4). The data extraction process will be conducted by the review team and cross-checked by a member of the study design team throughout the process. The data extraction tool will include study characteristics, including author, year, location and methodology; participant characteristics, including demographics, participant group, stage of MS, and current housing or living arrangement and results, conclusions and implications.
As recommended by the Cochrane’s Rapid Review Guidelines,25 a risk of bias assessment of the included articles will be conducted using the Critical Appraisal Skills Programme - Qualitative Studies Checklist (CASP).41 One reviewer will independently appraise the included articles, with a second reviewer verifying the judgements.25
Collating, summarising and reporting the results
The collating, summarising and reporting of the results will be guided by Arksey and O'Malley’s28 process by presenting all inclusions. Tabulated data will reveal the aim of the study, country of origin, the perspective, participant characteristics, study method and overarching findings.
Qualitative data will be extracted and analysed using NVivo 20 following Bengtsson’s42 qualitative content analysis process. The coding process is structured to ensure consistency across the review team. Each peer-reviewed paper included will undergo line-by-line coding separately by two team members. An inductive and open coding approach will be employed, condensing data into ‘meaning units’ with corresponding labels and descriptions,42(p11) which are stored using NVivo’s codebook feature. After coding an initial set of papers, coders will compare their work, adjusting as necessary to enhance reliability before continuing. To maintain consistency, a lead researcher will monitor progress at each stage. This iterative coding process will adapt as more data are processed, with regular reviewer discussions to establish consensus on code descriptions and interpretations before theme identification.42 As per Thomas and Harden’s43 approach to qualitative synthesis, the review team will assess codes and organise them by descriptive themes before developing analytical themes and recommendations directly addressing the support needs and preferences of people with MS. The outcomes will be visually represented through a concept map. The results will be grouped thematically in a narrative format to reveal higher-order themes.
A discussion of the results will address the research question to apply meaning and discuss ‘implications for future research, practice and policy’.29(p4) Combined, the themes we generate will provide comprehensive insights into the lived experience of people with MS. In particular, we will assemble knowledge generated about the support and assistive technology needs and preferences of people with MS to identify gaps, implications and areas for further research.
Patient and public consultation
The reference group assembled at the commencement of this research will be consulted throughout the review process. Once the results have been compiled, we will present these to the reference group for consideration. We will solicit their opinions to determine the accuracy or relevance of our findings based on the lived experiences of reference group members. Based on their input, we will seek to address the remaining gaps in the literature for further investigation.
Ethics and dissemination
Ethics approval is not required for this rapid review. The primary objective of this rapid review is to compile and analyse accessible peer-reviewed literature and grey literature that examines the support needs and preferences of people with MS. The findings from this rapid review will identify areas for improvement or opportunities pertaining to appropriate housing for people with MS and guide future studies. Intended outputs to disseminate our findings include consultation with our reference group, publishing a peer-reviewed article and presenting the results at a conference (eg, an MS Australia conference).
Ethics statements
Patient consent for publication
References
Footnotes
Contributors Guarantor is LC. All authors have contributed significantly to this work. LC, SM, and JD conceptualised the review and designed the research methodology, including the search strategy. DW provided oversight and guidance during the development of the protocol. JA, RR, FC, and KS were responsible for drafting sections of the manuscript, as well as contributing to the search, screening, data extraction, and analysis plans. All authors participated in editing and revising the manuscript and approved the final submission.
Funding This project received grant funding from MS Australia (grant number 22-0168).
Competing interests None declared.
Patient and public involvement Patients and/or the public were involved in the design, oconduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.