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Youth-centered approaches are needed to support self-management-related concerns for youth with multiple sclerosis during the transition to adult care.

Self-Management in Youth With Multiple Sclerosis During Transition to Adult Care and Adulthood: A Qualitative Study Using Interpretive Description

As the population with multiple sclerosis (MS) ages, clinicians are increasingly caring for older adults living with the disease. Age profoundly impacts MS disease course by reducing focal inflammatory activity associated with relapses and new T2 hyperintense lesions on MRI, while increasing the risk of developing progressive MS.

 These changes affect the use of MS disease-modifying therapies (DMT), which are more effective in treating relapsing MS and notably less useful in slowing disability accumulation in progressive MS. Adverse reactions to DMTs are also more frequent in older adults with MS, which can lead to higher risks of infection and lymphopenia.

Older adults with MS also face unique and overlapping symptoms of both aging and MS. Geriatric conditions such as frailty, multimorbidity, and polypharmacy are often present in older adults with MS and contribute to the clinical complexity of discerning age-related changes from MS progression.

 Additional barriers impede access to care caused by impaired mobility, financial constraints, and limited availability of multidisciplinary specialists. These common geriatric issues require increased awareness from neurologists and other health care professionals, who often lack formal geriatric training.

International Journal of Multiple Sclerosis Care 

), we focus on care for older adults with MS and issues that commonly occur and significantly impact their quality of life. The core of the issue comprises 4 review papers containing discussion and recommendations based on a consensus conference organized by the Consortium of Multiple Sclerosis Centers (CMSC) that took place at the CMSC annual meeting in Nashville, Tennessee, from May 29 to June 1, 2024. These papers address:

The interaction between the aging process and MS disease course;

DMT use and discontinuation in older adults;

The effects of comorbidity and polypharmacy; and

The value of multidisciplinary care and challenges in access to care for this population.

In preparation for the consensus conference, we formed a panel of clinicians with expertise on aging and MS and conducted a needs assessment survey on aging and MS. From the responses, we developed the aforementioned focus areas and assembled multidisciplinary working groups to summarize each topic based on “what we know,” “what we don’t know,” and “best practices and future directions for research.” Each group’s findings were presented at the conference and discussed among the full panel. A summary of the meeting was first published on the CMSC website and has since been adapted for this 

special issue on aging and MS. In addition, this special issue features original research on aging and MS, such as the 

, examining discrepancies between physical and psychosocial status in older adults with MS. We will continue to welcome additional papers related to aging and MS until the close of 2025.

As the general population ages, older adults are becoming the predominant demographic group in many parts of the world, and this trend is noted in the MS field as well. This special issue conveys advances made in the care of older adults with MS. However, it is also meant to be a call to action: While great strides have been made in understanding the mechanisms and effects of aging in the general population, there is still much that is unknown in aging research, especially about how aging affects individuals with MS. Health care providers should incorporate geriatric assessments into the care of people with MS, recognize the impact of aging on the course of MS, and understand the psychosocial impact of aging with MS, all while navigating the limited but growing information that guides our decision-making. While significant progress has been made in our understanding and treatment of MS in older adults, there is still much to learn from science about the experience of aging with MS.

As the population with multiple sclerosis ages, clinicians are increasingly caring for older adults living with the disease.

Letter From the Guest Editors - Multiple Sclerosis and Aging

The prevalence of osteoporosis is higher in people with multiple sclerosis (MS) compared with the general population. Poor bone health, including higher rates of osteopenia and osteoporosis than in the general population, has been established in people with MS. This qualitative study examines how much a group of health care professionals (HCPs) knows about osteoporosis as an MS comorbidity, as well as current practices, barriers to effective bone health management in people with MS, and recommendations for improvement.

Thirty-two Australian HCPs participated in qualitative interviews, including 4 neurologists, 8 endocrinologists, 9 MS nurses, 6 general practitioners, and 5 physiotherapists. Participants were recruited via email, phone calls, and network contacts. Due to a technical error with the recording of 1 interview, 31 interviews were transcribed using Otter.ai. They were reviewed for accuracy and analyzed through NVivo using framework analysis.

Most clinicians lacked specific knowledge regarding bone health in people with MS. While the heightened osteoporosis risk in people with MS was presumed, participants perceived current practices as insufficient or were uncertain about their adequacy. Lack of awareness and education about bone health in people with MS emerged as primary barriers, as did insufficient interdisciplinary communication, role delegation, funding, and resources, which were deemed essential for better management.

Clinicians advocated for specific guidelines, enhanced education for HCPs, increased resources for patients and clinicians, and improved access to bone health screening for people with MS. These findings underscore the need for comprehensive strategies, emphasizing collaboration, education, and resource allocation, to address the complexities of bone health in individuals with MS.

We thank the participants who contributed their time and insights to the study.

All authors report no relevant conflicts of interest.

Multiple sclerosis (MS) is a chronic inflammatory autoimmune disease characterized by demyelination and axonal degeneration in the central nervous system, leading to many symptoms and resulting disabilities. Among the many consequences associated with MS, such as mobility impairment, cognitive dysfunction, and fatigue, there is a growing recognition of its impact on musculoskeletal health, particularly regarding osteoporosis, falls, and fracture risk,

 which pose significant challenges to an individual’s quality of life.

Symptoms such as imbalance, muscle weakness, uncoordinated movements, numbness, impaired vision, and vertigo predispose individuals to falls and subsequent fractures.

 Epidemiological studies have shown that people with MS have a higher prevalence of osteoporosis

 consistent with low bone mineral density.

 The prevalence of osteoporosis was recently reported to be 30% in people with MS compared with 9% in age- and sex-matched healthy controls under 65 years of age (median 28 years; range, 35-57 years) in an Austrian study.

 More broadly, a meta-analysis of 29 studies of people with MS, with a mean participant age of 41.5 years, reported the prevalence of osteoporosis at 17% and the prevalence of osteopenia at 43%. The prevalence of osteoporosis in adults over 50 years from the general population in high-income countries (ie, Australia, Europe, and the United States), ranged from 3% to 8% in men and 16% to 33% in women.

 This elevated risk stems from a combination of factors intrinsic to the disease process and secondary to its clinical manifestations. One example of this combination is that people with MS are often prescribed medications that may reduce bone density, including glucocorticoids, immunomodulators, antidepressants, anticonvulsants, anxiolytics, opioids, and antipsychotics.

Despite the substantial impact of osteoporosis on people with MS, there is a gap in current practice among health care professionals (HCPs). A qualitative study of 27 women with MS that examined knowledge of osteoporosis and experience with HCPs reported that several women answered no when asked, “Has anyone involved in your care spoken with you about osteoporosis?”

 Many women indicated that their physicians had suggested supplementation with calcium without an explanation for the recommendation.

 A Turkish study that assessed 325 people with MS reported that participants with MS had minimal knowledge of osteoporosis; however, participants with any fall risk had higher osteoporosis knowledge than those with no fall risk, suggesting clinicians may reactively provide osteoporosis education, rather than providing this information as a preventive measure.

 In the general population, studies of HCPs conducted in Canada, India, and Iran demonstrated insufficient knowledge regarding osteoporosis diagnosis and management, osteoporosis medications, and preservation strategies, indicating that for HCPs, poor understanding of bone health in people with MS is a global problem.

 Given that osteopenia and osteoporosis can be modified by lifestyle and pharmacological interventions, it is imperative that bone health be addressed by HCPs managing MS for their patients.

To address the gaps in the literature, we aimed to assess the HCPs’ knowledge about bone health specific to patients with MS and their current bone health practices, including in educating, evaluating risk, referring, and managing bone health. Specifically, we sought to (1) evaluate the current practices among HCPs for whom bone health in people with MS should be a consideration, including MS specialists, general practitioners (GPs), endocrinologists, and physiotherapists or exercise physiologists; and (2) identify the facilitators and barriers to improving bone health and the detection and management of osteoporosis in people with MS.

This qualitative study investigated perspectives of HCPs involved in the health care of people with MS. This research was guided by framework analysis, which includes the subjective experience of the research participants and concepts and issues identified in the literature.

 The research team included MS, musculoskeletal, and health care researchers, clinicians and trainees, as well as people with MS, all of whom provided expert input into the development of the interviews, validation of the analysis, and drafting/editing of the results. All interviews were undertaken by a trainee clinician (L.A.J) under the supervision of senior researchers with qualitative research expertise (L.G., A.Z.).

HCPs were recruited through network contacts, via email and phone calls (convenience sample), between December 2022 and March 2023. Inclusion criteria were access to an internet connection and Zoom, and being a registered and practicing HCP, including neurologists, endocrinologists, MS nurses, general practitioners (GPs), and physiotherapists/exercise physiologists. With the exception of neurologists and nurses, participants were not required to be managing the health care of people with MS at the time of the interview, but were in health care roles where they could encounter patients with MS. Study ethics approval was granted by the Monash Health Human Research Ethics Committee (project number: RES-22-0000579A). Participants provided recorded, verbal informed consent.

Interviews were conducted and recorded via Zoom. Interviews followed a semistructured interview guide consisting of questions about general demographic characteristics, knowledge of bone health and MS, current practices (including use of the Fracture Risk Assessment tool [FRAX], an international reference standard tool to assess osteoporotic fracture risk

), barriers and facilitators in managing bone health in people with MS, and recommendations to improve practices (see Grech Supplemental at the bottom of this article). Responses were unstructured, and participants were prompted with further questions as required. Deidentified interviews were transcribed using Otter.ai and reviewed for accuracy by the interviewing researcher (L.A.J.).

Transcripts were stored and coded in NVivo 12 Plus (QSR International). Transcripts were coded by 1 author (L.A.J.) and checked for coding accuracy and quality by a second author (L.G.). The data were independently analyzed by these 2 authors using a framework developed a priori by the researchers from research literature concepts, qualitative interviews with people with MS, and the research goals. The framework utilizes subthemes specific to the health professional where relevant and was expanded to incorporate emergent themes and subthemes consistent with framework analysis.

 Quotes were grouped according to themes and are identified by HCP. The approximate scale of the proportion of participants that identified with a theme or sentiment is as follows: 

 Given the qualitative nature of this work, these percentages should be used as a guide to the level of response consistency and not for broad generalization.

Interviews were conducted with 32 Australian HCPs, including 4 neurologists, 8 endocrinologists, 9 MS specialist nurses, 6 general practitioners, and 5 physiotherapists. The analysis included 31 interviews due to a technical error with the interview recording with 1 of the physiotherapists. HCPs worked in settings ranging from public hospitals to private practice, predominantly in the states of Victoria and New South Wales. A similar number of men and women participated in the study, and most were between the ages of 30 and 49 years (

). The average interview duration was 26.5 minutes (range, 12-48 minutes), with the shortest interview times among the neurologists (median [

] = 17.8 minutes) and the longest among the nurses (

Knowledge About Bone Health Specific to MS

None of the HCPs interviewed knew the prevalence of osteoporosis in people with MS. When asked if osteoporosis was more common in people with MS, a few MS nurses and half of the GPs were certain there was an increased osteoporosis risk in people with MS (

). Most HCPs acknowledged knowing little about bone health related to MS specifically.

HCPs identified various risk factors associated with lower bone density in individuals with MS. These included mobility issues, higher disability, reduced activity (particularly weight-bearing exercise), increased falls leading to fracture risk, inadequate vitamin D, and low calcium intake. Half of the MS nurses recognized the impact of MS diets on vitamin deficiency as a risk factor. The high use of glucocorticoids for MS relapses was identified as a risk factor for osteoporosis. HCPs were unaware of specific guidelines for managing bone health in people with MS.

Current Management of Bone Health in People With MS

Education about bone health, osteopenia, and osteoporosis. 

None of the HCPs reported providing specific education on bone health, osteopenia, or osteoporosis in the context of people with MS. Half of the neurologists responded to questions raised by their patients with MS and referred them to their GP for further information. GPs noted that bone health was not commonly addressed in the context of MS care. 

Lifestyle recommendations for bone health. 

MS nurses, neurologists, and physiotherapists commonly provided healthy lifestyle recommendations to people with MS. While most MS clinicians suggested practices beneficial for bone health, such as addressing low vitamin D intake, promoting a healthy diet, and increasing exercise, these recommendations were often framed within the context of improving overall MS outcomes rather than specifically emphasizing bone health. Similarly, physiotherapists focused on exercises that contributed to better bone health and the prevention of falls in people with MS, including strength and balance training and aerobic exercises.

MS clinic assessment of risk, mobility, falls, and fractures. 

Most MS nurses reported that physical assessments were routinely performed at clinic appointments. This was generally in the form of a neurological-focused assessment, most often using the Expanded Disability Status Scale, administered by the clinic neurologists. Nurses were divided when asked if they assessed for injuries, falls, and fractures. Some said they did this routinely, while others probed further only if the patient brought up a decline in mobility or mentioned a fall. None of the MS nurses or neurologists used the FRAX tool to assess absolute fracture risk in people with MS.

All HCPs stated that bone density screening was inadequate in people with MS. Most HCPs considered bone health screening important, and some thought that screening should be initiated earlier for individuals with MS than for the general population. More broadly, suggestions of how often screening should occur ranged from yearly to every 2 years, with a follow-up duration dependent on baseline bone density.

Management of bone health and osteoporosis. 

When asked if management of bone health was adequate for people with MS, responses varied depending on the discipline. Some nurses suggested bone health was not adequately managed and that health care services and management varied by service. Some physiotherapists responded that they did not specifically focus on bone health in clients with MS. Half of the endocrinologists stated that their patients with MS had good osteoporosis management.

Most HCPs reported having specific knowledge of and providing monitoring for medications and adverse effects related to their specialty only. For example, MS neurologists and nurses monitored medications related to MS, and endocrinologists monitored osteoporosis medications. Except for endocrinologists, most HCPs did not know which medications negatively impacted bone health other than glucocorticoids. Many MS nurses and neurologists did not inform patients about the potential negative effects on bone health after prescribing or ceasing medication, and none of the MS clinicians had referred MS patients for a bone density scan (ie, dual energy X-ray absorptiometry, DXA) after prescribing or discontinuing medication.

Barriers and Facilitators to Managing Bone Health

Most MS nurses and neurologists considered bone health screening and management to be the responsibility of GPs. Many MS clinicians reported only seeing people with MS every 6 to 12 months when they were stable and indicated that bone health was not a priority, given limited consultation time. Some MS clinicians reported that the difficulties with mobility and multiple other disease-related factors in patients with more complex MS created a barrier in identifying low bone density.

Most endocrinologists considered the bone health management role to be multidisciplinary, but indicated that GPs had a pivotal role. There was broad agreement by HCPs that they would liaise with the patient’s GP about issues related to bone health, although a few endocrinologists acknowledged that they communicated with the neurology team rather than the GP. GPs noted that they often focus on other clinical aspects related to MS or the person’s health care more broadly.

Most HCPs acknowledged the need for multidisciplinary health care to manage bone health in people with MS, including physiotherapy, occupational therapy, dietetics, endocrinology, and podiatry. Some HCPs communicated with other team members, and some deferred to the GP as the communication coordinator. In the management of falls and fractures, many MS nurses and some neurologists highlighted the importance of involving allied health professionals to facilitate physical conditioning and prescribe equipment to prevent falls, such as braces, orthotics, and gait equipment.

Lack of awareness and information about poor bone health in people with MS were identified as barriers by half of the HCPs interviewed. Some suggested they would benefit from educational resources, such as fact sheets or other written information, online learning modules, or seminars.

HCPs were unaware of bone health resources specific to people with MS. Some HCPs, predominantly endocrinologists, suggested that the resources would be similar to those for the general population. HCPs suggested that patient education should be provided by MS community service organizations through webinars, peer support groups, and other communication modalities.

Most HCPs acknowledged a need for improved practice regarding bone health in people with MS, including standardized pathways to screen and identify patients with MS at risk of medication-related poor bone health. Some nurses and half of the endocrinologists suggested that guidelines for the prevention, detection, and management of osteoporosis in people with MS would be helpful for HCPs.

When asked if bone health in people with MS should be treated in the same way or in a different way than the general population, most HCPs pointed to the need for a different approach. Reasons for differences in management included the need for a greater focus on fall risk education and the need for exercise to maintain bone health and improve balance to minimize falls. To support these needs, a referral to an allied health professional was suggested. In contrast, a few HCPs responded that they would treat people with MS no differently than other patients.

Most endocrinologists stated that people with MS often pay for bone density scans because they do not meet the criteria for a government (ie, Medicare) subsidized scan; if required, they also believed that some of their patients would also need to pay for medications to maintain or improve their bone density. A few endocrinologists identified the absence of a government subsidy to screen bone density in people with MS as a screening barrier, especially for people of lower socioeconomic status. A few endocrinologists and half of the GPs noted that a government subsidy would assist with better detection of low bone density to enable appropriate management.

This research assessed current practices as well as barriers to and facilitators of bone health management across HCPs working with people with MS, including GPs, MS nurses, neurologists, endocrinologists, and physiotherapists. We found (1) HCPs had little knowledge about bone health specific to people with MS; (2) an absence of health care and lifestyle self-management information about risks for poor bone health and prevention; (3) insufficient bone health risk assessment, screening, and management in people with MS; (4) a need for improved multidisciplinary coordination and support; and (5) a need for management guidelines, training, and educational resources for HCPs. Our findings are consistent with previous research where people with MS reported that HCPs did not address osteoporosis in consultations, as well as with research assessing HCPs more broadly that demonstrated insufficient knowledge regarding osteoporosis diagnosis and management, osteoporosis medications, and bone-health preservation strategies.

The majority of HCPs acknowledged knowing little about bone health in people with MS, and none of the HCPs interviewed knew the prevalence of osteopenia and osteoporosis in people with MS. Most HCPs were able to identify several risk factors, including reduced mobility, higher disability, reduced physical activity, and inadequate vitamin D and calcium intake. The only treatment HCPs recognized as a potential risk factor for poorer bone health was the high use of glucocorticoids. Although further high-quality research is required to fully understand the impact of medication on bone health in people with MS,

 current research endorses an increased risk of fracture from a number of medications often prescribed for people with MS, including antidepressants, anxiolytics, anticonvulsants, opioids, and antipsychotics.

 None of these medications were mentioned as potential risk factors for people with MS by HCPs during the interviews. In Australia, around 35% of people with MS take antidepressants compared with 8% to 10% of the general population.

 Further, autologous hematopoietic stem cell transplantation (AHSCT), an increasingly common treatment for MS, has established risks for bone health and fragility fractures.

 While guidelines for AHSCT for people with MS refer to concerns about late effects, there is no mention of bone health or associated monitoring requirements.

 This deficit in interdisciplinary knowledge potentially increases the underdiagnosis of osteopenia and osteoporosis.

In our study, HCPs acknowledged that bone health risk assessment, screening, and management were inadequate in people with MS. The reason is multifactorial, including the lack of awareness of the higher prevalence of osteopenia and osteoporosis in people with MS among HCPs, and financial barriers to bone density screening by DXA. The HCPs interviewed were unable to identify any guidelines for bone health management in people with MS. Consistently, we identified limited referral for bone screening for at-risk patients. While guidelines to support bone health management in people with MS are limited,

 an evidence-based guideline that is focused on clinical management of MS exacerbations recommends baseline and annual bone density screening for people who undergo repeated glucocorticoid treatment for MS exacerbations.

We found that a lack of government-funded bone density screening also limits referral. In Australia, to be eligible for a government-funded DXA scan, a person must be 70 years of age or older, or have 1 of the following: (1) one or more minimal trauma fractures in the past 10 years; (2) be over 50 years of age with early menopause, hypogonadism, prolonged glucocorticoid therapy, celiac disease or malabsorption disorders, rheumatoid arthritis, primary hyperparathyroidism, hyperthyroidism, chronic kidney or liver disease, or androgen deprivation therapy.

 Most people with MS do not fall into any of these categories, despite evidence of a younger age of osteopenia and osteoporosis onset.

 As such, they may be overlooked or not able to undergo a DXA scan due to the high out-of-pocket cost. Endocrinologists noted that this creates a health care barrier and a socioeconomic divide, placing people with MS with lower socioeconomic status at risk of poorer health outcomes,

 including comorbidity and mortality. Musculoskeletal conditions are recognized as being among the most prevalent and costly comorbidities in people with MS, resulting in high losses to productivity and resource costs.

 There is a clear need to proactively deliver health care services to prevent bone health degeneration.

We found that a lack of multidisciplinary coordination among HCPs contributes to the barriers to patient education, assessment, and management of bone health in people with MS. Most HCPs who treat patients with MS considered bone health management to be the responsibility of the GP. Improved multidisciplinary health care for people with MS has been previously called for with the proposed development of MS care units.

 Examples from cancer and chronic kidney disease clearly provide evidence that multidisciplinary health care teams result in better health outcomes in people with multimorbidity.

 The National Comprehensive Cancer Network Task Force was formed to ensure that multidisciplinary health care teams have guidelines to provide optimal assessment and treatment of bone-related issues in patients with cancer.

 Multidisciplinary health care teams managing patients with cancer have resulted in significant reductions in skeletal complications, bone pain, and fracture risk, as well as improved quality of life.

 Similarly, multidisciplinary health care teams have been shown to be effective in patients with chronic kidney disease.

We have provided recommendations to improve bone health assessment and management for people with MS, focusing on systemic-level improvements and support for clinicians and MS community services and people with MS (

This is the first study to assess the knowledge and current practices of HCPs regarding bone health in people with MS. We interviewed a range of HCPs who might be expected to support education, assessment, and management of bone health in people with MS. Data saturation for broad themes was achieved in our sample of HCPs. Similarly, data saturation for themes and subthemes within each health care specialization was generally reached. However, we acknowledge that our sample of only 4 neurologists may have limited the collection of more nuanced information. Similarly, HCPs were interviewed about their experience within an Australian context, and we cannot be certain that this translates within the context of other countries; however, research suggests that osteoporosis in people with MS is an international concern.

 Although participants were recruited through researcher network contacts, our sample included a broad range of ages and experiences.

Our qualitative research study interviewed HCPs and determined their knowledge of bone health in people with MS, as well as their current bone health assessment and management practices. We identified a need for improved knowledge, and HCPs expressed the need for educational resources on bone health specific to people with MS, as well as guidelines to identify risks and pathways to assess and manage bone health, osteopenia, and osteoporosis. We also found a need for improved multidisciplinary support for bone health among HCPs, including clear role delineation for patient education, referral, assessment and management, and improved public health care funding for adequate screening and management of this at-risk group.

There is insufficient bone health risk assessment, screening, and management; there is also an absence of health care and lifestyle self-management information about the risk and prevention of poor bone health for people with multiple sclerosis.

Understanding the Barriers to Effective Bone Health Management in People With Multiple Sclerosis

The effectiveness of occupational therapy (OT) services for people with multiple sclerosis (MS) has not been updated since the last systematic review in 2010, particularly outcomes within the scope of OT practice. The objective of this systematic review was to appraise evidence published since 2011 on the effectiveness of interventions within the scope of OT practice for activities of daily living (ADL) and sleep in adults with MS.

Quantitative studies (Oxford Centre for Evidence-Based Medicine Levels of Evidence 1b through 3b) from January 2011 through July 2023 were systematically reviewed through 3 literature searches performed in January 2019, February 2022, and July 2023 using the Medline, APA PsycInfo, Cumulative Index to Nursing and Allied Health Literature, OTseeker, and Cochrane Database of Systematic Reviews. Inclusion criteria were adult participants with MS and OT-related interventions that addressed ADL or sleep. All authors independently screened titles and abstracts and then appraised full-text articles. Then at least 2 authors analyzed and grouped included articles into outcomes of interest. Risk of bias for study quality and strength of evidence were then analyzed.

The review included 45 studies on sleep, falls and functional mobility, toileting hygiene (continence), sexual activity, and general ADL. Cognitive behavioral therapy, mindfulness training, targeted exercise programs, and counseling using the Permission, Limited Information, Specific Suggestions, and Intensive Therapy model or the Good Enough Sex model were effective in adults with MS.

Occupational therapists can provide interventions using the above approaches, which have been shown to empirically improve ADL function and sleep outcomes. Researchers, consumers, and practitioners should consider demographic and diagnostic differences when generalizing these findings.

We thank Deborah Lieberman, Elizabeth G. Hunter, Susan Cahill, and Hillary Richardson at AOTA for their support during this project. We also thank University of Puget Sound science librarian Eli Gandour-Rood for conducting the first literature search update.

The systematic review was originally supported by AOTA. The authors have no conflicts of interest to report.

Multiple sclerosis (MS) is a progressive disease of the central nervous system that profoundly affects engagement in activities of daily living (ADL) and sleep. The Multiple Sclerosis International Federation reported that the most common MS symptoms include fatigue, pain, sexual dysfunction, problems in movement and coordination, bladder and bowel function, vision, as well as cognitive and emotional changes.

 Due to the complexity of MS, a multidisciplinary care team is recommended for MS care. Occupational therapists contribute to the multidisciplinary team in goal setting and functional training.

 Depending on the needs of individuals with MS, occupational therapists use the approaches of promoting, establishing/restoring, maintaining, and modifying performance and participation in ADL and sleep, and/or preventing loss of the ability to perform ADL or to sleep well, to optimize patients’ occupational performance.

Occupational therapists employ occupation-based interventions within the scope of practice. According to the Occupational Therapy Practice Framework-4 (OTPF-4),

 occupations are categorized as ADL, instrumental ADL, health management, rest and sleep, education, work, play, leisure, and social participation. The ADL category is divided into the subcategories of functional mobility, toileting hygiene (continence), sexual activity, dressing, bathing/showering, personal hygiene/grooming, and eating/feeding.

 The rest and sleep category is further subdivided into rest, sleep preparation, and sleep participation.

 Given the impact of MS on ADL and sleep, occupational therapy (OT) offers benefits to people with MS.

In their 2014 systematic review of OT interventions for people with MS, Yu and Mathiowetz

 found strong evidence for fatigue management courses, moderate evidence for inpatient and outpatient rehabilitation service effectiveness, and limited evidence for health promotion programs. Their findings substantively contributed to health care professionals’ portfolio of OT interventions for individuals with MS. And yet, a comprehensive examination of the scope of OT practice in specific outcomes, rather than a broad range of outcomes, would reinforce the role of OT among peer health care professionals. Further, since the review was completed, more focus has been placed on the specific outcomes of sleep and ADL (including avoiding falls, toileting hygiene/continence, and sexual activity) affecting the quality of life of individuals with MS, as indicated in recent publications.

 MS care teams would benefit from an appraisal of recently published empirical evidence for the effectiveness of OT interventions addressing these outcome areas. Thus, the purpose of this systematic review is to determine the evidence for the effectiveness of interventions within the scope of OT practice to improve and/or maintain performance and participation in ADL and sleep for adults with MS and to inform new practice guidelines for occupational therapists in MS care.

This systematic review was 1 of 4 projects collectively covering areas of occupation, as defined by the OTPF-3 (official version at the time the projects began),

 updating evidence from the previous review.

 We followed the Cochrane Review methodology

 and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

 No individuals with MS or members of the public were involved in the review process. A medical librarian conducted the original review by searching the Medline, PsycInfo, Cumulative Index to Nursing and Allied Health Literature, OTseeker, and Cochrane Database of Systematic Reviews for articles from the years 2011 through 2019. Results were collated and duplicates removed. The project methodologist reviewed the citations and eliminated irrelevant articles (eg, wrong year or population). After a delay due to the COVID-19 pandemic, an update of the search was conducted in February 2022 by a university science liaison librarian, using the same criteria as in the first search, and in July 2023 by the third author (G.S.T.), using the topics identified as relevant in the earlier searches.

Search terms were created with input from an advisory group of clinical and quality improvement content experts, the research methodologist, American Occupational Therapy Association (AOTA) staff, and a medical librarian. The review of the current available literature was then undertaken. 

 shows an example of the search strategy, including keywords used (all supplemental materials are available in a PDF at the end of the online article).

Inclusion criteria for studies were that the participants were adults (≥ 18 years) with MS; that the interventions addressed overall (general) ADL, other ADL (including falls and functional mobility, toileting hygiene/continence, and sexual activity), or sleep; and that the interventions were within the scope of OT practice (

). Articles had to have a quantitative methodology (as adapted by AOTA

1b: well-designed (low or moderate risk of bias), adequate sample size, individual randomized controlled trial (RCT)

2b: small sample, high risk of bias, or pilot study RCT; 2-group comparison, nonrandomized studies

3b: 1-group, noncontrolled, pretest-posttest studies.

Articles excluded were those published before 2011, systematic reviews, conference presentations, and those not published in English.

The methodologist at AOTA provided 602 articles for the first phase of the search (

). Seventy-five articles were screened by all authors to establish inter-rater reliability. After 2 rounds of review and discussion for article inclusion, there was perfect or near agreement (eg, 2 yes and 1 maybe) for 92% of the articles.

Of these 527 articles, each author took one-third for screening. Questions were discussed by the authors until they were resolved. For example, studies on functional mobility were excluded if they only used ambulation as an intervention, or if they only measured balance or gait outcomes, but were retained if they measured fall incidence or efficacy (Figure 1). No articles were added from hand searching. From the 602 articles, 26 were confirmed. During the updates, 974 articles were located by the university librarian. Each author screened one-third for inclusion. Another 13 articles were identified. In a final update by the third author (G.S.T.), 6 articles were added, making a total of 45 from January 2011 through July 2023.

Data were extracted from the full text of the 45 confirmed articles. The categories sleep (C-H.Y.), falls and functional mobility (S.F.), toileting hygiene/continence (G.S.T.), and sexual activity (G.S.T.) were apparent and predominated

Remaining studies measured participants’ overall ADL, and thus were categorized as 

 ADL (C-H.Y.). Information was entered into an evidence table (

). Each author reviewed the others’ table entries to strengthen format consistency. The early phase table was edited by AOTA methodologists for uniformity with concurrent reviews.

Assignment of level of evidence was made for all retained articles according to the hierarchy of the Oxford Centre for Evidence-Based Medicine,

Confirmed articles were assessed for risk of bias (low, moderate, or high) using methods specifically designed for nonrandomized and randomized trials (Levels 1b and 2b

), and for 1-group pre-post studies (Level 3b) using the National Heart, Lung, and Blood Institute

). Each of the authors reviewed one-third of the list, and consulted together to ensure uniform assessment. For example, “study participants were representative of real-world patients” was interpreted as participants were representative of the target population of adults with MS and were not drawn from a subpopulation (eg, ambulatory) of convenience. Also, “outcome measures were collected multiple times” was interpreted as outcome measures were collected at least at preintervention, postintervention, and 1 follow-up time.

During an early review of the articles, an additional inclusion criterion was selected. Only articles with clearly reported ADL or sleep outcomes were kept. Studies using only assessments of quality of life that contained just 1 or 2 items pertaining to ADL performance were excluded. Studies only evaluating the severity of fatigue were also excluded, as they did not directly measure ADL or sleep outcomes.

The principal approach was a descriptive synthesis. Articles from each category were divided into subcategories by type of intervention studied. Each subcategory was assigned a strength of evidence level (strong, moderate, or low) to indicate justifiable confidence in that finding.

 This appraisal was based on the number of articles, level of evidence, risk of bias, and statistical significance of the findings (Table S2).

This systematic review of interventions within the scope of OT practice for improving ADL performance and sleep in adults with MS found 45 relevant articles (see 

). The studies were categorized into 5 themes: sleep (11 studies), general ADL (7 studies), falls and functional mobility (13 studies), toileting hygiene/continence (4 studies), and sexual activity (10 studies). No studies examining the specific ADL outcomes of bathing/showering, eating/feeding, dressing, or grooming were found. Of the 45 studies, 19 were evidence Level 1b, 15 were Level 2b, and 11 were Level 3b. Most studies were conducted in outpatient or community settings, generally on individuals with less severe MS. Follow-up times ranged from none to 21 months (Table S5). See 

The total number of participants across the categories varied: sleep (N = 503), general ADL (N = 293), functional mobility and falls (N = 769), sexual activity (N = 674), and toileting hygiene/continence (N = 92). Risk of bias ranged from low (n = 15) to moderate (n = 29) to high (n = 1; see Tables S3 and S4). None of the studies reported adverse events.

Mindfulness-Based Cognitive Interventions

Due to differing conditions and results, there is moderate strength of evidence (1 Level 1b study,

 risk of bias moderate; 1 Level 2b study,

 risk of bias high; and 1 Level 3b study,

 risk of bias moderate) supporting the immediate effects of an 8-week mindfulness-based cognitive training in a home setting (for adults with relapsing-remitting or secondary progressive MS with severe fatigue) for the mitigation of sleep disturbance symptoms. Cavalera et al

 found that, compared with those who received psychoeducation, adults with MS who received mindfulness-based cognitive training demonstrated statistically significant improvement of sleep symptoms at posttest (Medical Outcome Study Sleep scale); however, no retention effects were found at 6 months. Lorenz et al

 reported that, after receiving an 8-week mindfulness-based stress reduction course combined with sleep hygiene education, adults with MS showed immediate reduction of nighttime awakening, but no significant improvement at 3-month follow-up. Hoogerwerf et al

 reported that, after receiving mindfulness-based cognitive therapy, no statistically significant improvement in sleep symptoms was found in adults with MS who experienced severe fatigue, (sleep subscale of Symptom Checklist-90), across pretest, posttest, and 3-month follow-up.

Cognitive Behavioral Therapy (CBT) Interventions

Despite inconsistent sample characteristics, there is strong strength of evidence (3 Level 1b studies,

 all with moderate risk of bias) supporting the use of CBT to improve sleep. In addition to the immediate effect,

 statistically significant therapeutic effects of CBT interventions (Pittsburgh Sleep Quality Index [PSQI]) were maintained at 4 weeks for women with MS

 and at 20 weeks for adults with MS with depressive symptoms.

 Although no statistical analysis was performed, Clancy et al

 reported a positive immediate effect of CBT on increased total sleep time in 73% of the sample (mean, +1.5 hours). Decreased daytime sleepiness was a statistically significant mediator in reducing fatigue for adults with MS who had severe fatigue after receiving a 16-week CBT intervention.

There is moderate strength of evidence supporting aerobic exercise for addressing sleep symptoms

 (2 Level 2b studies, risk of bias low). A 12-week moderate-intensity protocol brought statistically significant improvement in daytime sleepiness (Epworth Sleepiness Scale) and sleep quality (PSQI) for ambulatory adults with relapsing-remitting or secondary progressive MS.

 No statistical differences in outcome, however, were found between participants who received the aerobic exercise and those who did low-intensity walking and stretching. Al-Sharman et al

reported that, compared with those who received low-intensity nonaerobic exercise, participants (1 month relapse-free) receiving 6 weeks of moderate aerobic exercise showed statistically significant improvement in sleep quality (PSQI and Insomnia Severity Index) and sleep efficiency (ActiGraph device).

There is a moderate strength of evidence (1 Level 1b study, risk of bias low) that a web-based physical activity program did not improve sleep for persons with MS. Pilutti et al

 found no statistically significant difference in improvement in sleep quality (PSQI) after a 6-month web-based education program for ambulatory adults with MS, compared with the control group.

Low strength of evidence (1 Level 1b study, risk of bias low) supported a self-management OT intervention. Kos et al

 examined the effectiveness of a self-management OT intervention of 3 weekly 60- to 90-minute sessions based on energy conservation for ambulatory adults with MS who were highly affected by fatigue. Participants showed statistically significant improvement in ADL function after intervention as measured by the Canadian Occupational Performance Measure (COPM). However, Kos et al

 found no significant differences between those who received the OT intervention and those who received relaxation therapy.

Multidisciplinary/Interdisciplinary Rehabilitation

Moderate strength of evidence supported rehabilitation programs that were multidisciplinary/interdisciplinary (1 Level 1b study,

 found no statistically beneficial effects of a multidisciplinary outpatient rehabilitation program for ambulatory adults with MS who experienced fatigue in improving ADL function as measured by the Functional Independence Measure (FIM). Karhula et al,

 however, found that participants with either moderate or severe disability showed statistical improvement in performance and satisfaction on the COPM after receiving a 2-year outpatient multidisciplinary rehabilitation. In addition, Lexell et al

 reported that 42% and 56% of studied adults with MS showed clinically relevant changes in performance and satisfaction, respectively, on the COPM, after receiving an inpatient interdisciplinary rehabilitation program. No statistical analysis on the effectiveness of the program was reported.

There was low strength of evidence (1 Level 3b study, risk of bias moderate) supporting the effectiveness of a cognitive occupation-based program. Reilly and Hynes

 found statistically significant improvement in ADL function 1-week after a cognitive occupation-based program as measured by a Goal Attainment Scale for adults with MS who had mild cognitive difficulty and were clinically stable. They also reported clinically significant improvement in occupational competencies, measured by the Occupational Self-Assessment Daily Living Scale, at an 8-week follow-up.

There was moderate strength of evidence that a dexterity training program (1 Level 1b study, risk of bias low) improved self-perceived ADL function. Kamm et al

 compared the immediate effect of a 4-week home-based dexterity training program (5 days a week for 30 minutes) with a resistance training program for adults with relapsing-remitting, secondary progressive, or primary progressive MS who had dexterity problems. Participants in the intervention group showed statistically significant improvement in dexterity-related ADL, measured by a dexterity-related ADL questionnaire.

There was low strength of evidence (1 Level 3b, risk of bias low) supporting a 5-week aerobic exercise training program with statistically significant improvement in ADL function (via FIM).

Occupational therapists treating people with multiple sclerosis reporting sexual function challenges should consider a counseling intervention using the Permission, Limited Information, Specific Suggestions, and Intensive Therapy model or the Good Enough Sex model to improve self-reported sexual function.

Alene Toulany, MD, MSc, FRCPC

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