Awareness and Utilization of Public Physiotherapy Health Care Services to Support People With Multiple Sclerosis: A Health Care Service Audit.

BACKGROUND: To maximize functioning and well-being in people with multiple sclerosis (MS), physiotherapy consultation is recommended at the point of diagnosis and throughout the disease course. We wanted to determine whether patients with MS being managed through a large metropolitan hospital in Australia accessed physiotherapy input as part of their MS management consistent with evidence-based recommendations and to identify patients' self-reported physiotherapy requirements, including symptom management, information needs, and service delivery preferences. METHODS: Surveys were sent to 597 MS clinic patients, and 160 responded. Data were analyzed using descriptive methods to derive frequencies and percentages. The survey consisted of 16 questions plus 2 optional questions related to sociodemographics (age and postcode). RESULTS: Of 160 respondents, 142 completed all 14 nonoptional questions. One-third of participants (n = 53) were aware of the hospital MS clinic physiotherapy services, with 21.3% (n = 34) saying that they had accessed these services. Conversely, 40.1% of respondents (n = 61) reported having consulted a private physiotherapist. Combined, 52% of respondents reported seeing a physiotherapist. There was a clear preference (94.7%; n = 144) for access to the MS clinic physiotherapy service. The presence of at least 1 current MS-related physiotherapy problem was reported by 82.2 2% of respondents (n = 125). The top ways to access MS-related information were via a specialist MS website (57.6%) and a mobile app (55.6%). CONCLUSIONS: There is an unmet need for physiotherapy, and many participants may have foregone services due to unawareness. Improved awareness and uptake of physiotherapy at the point of diagnosis is needed to maximize functioning and well-being in people with MS.

Clinical Practice Guidelines for the Detection and Treatment of Depression in Multiple Sclerosis: A Systematic Review.

Purpose of Review: The association of multiple sclerosis (MS) with depression has been well documented; however, it frequently remains undiagnosed, untreated, or undertreated, with consequences to the person, family, and economy. The aim of this study was to determine the quality, scope, and consistency of available guidelines and consensus statements to guide clinicians managing people with comorbid MS and depression. Recent Findings: Based on our systematic search of the literature, 6 guidelines and consensus statements met the inclusion criteria. Of these, 4 presented recommendations on depression screening in MS and 5 offered recommendations for treatment. Despite most guidelines presenting evidence-based recommendations, they were generally of low-quality evidence overall. Inconsistencies identified across guidelines and consensus statements included variations in recommendation for routine screening and which screening tool to use. Most guidelines lacked detail, often referring to general population guidelines without describing to what extent they can be applied to people with MS. Summary: The findings of this review highlight the need to develop high-quality, comprehensive clinical practice guidelines with clear recommendations that can be globally implemented by healthcare clinicians working with people with MS.

Addressing me in the context of my disease: Why it is so complicated.

Addressing a person in the context of their disease must be done respectfully. As a person with multiple sclerosis (MS), my preference is to be referred to as such. Some people with MS refer to themselves as MSers, MS warriors, MS sufferers, and that's fine. A person with MS can refer to themselves in the context of their disease in the manner they choose. People without MS should use terminology most respectful and acceptable to the broadest of the minority. Academics sometimes use persons with MS to refer to an infinite number of people. Not only is this incorrect but use of persons has broadly fallen out of favour in recent decades. In this personal viewpoint I discuss these issues from a lived experience perspective.

Assessment and treatment of depression in people with multiple sclerosis: A qualitative analysis of specialist clinicians' experiences.

BACKGROUND: Depression is common in people with multiple sclerosis (MS), with lifetime prevalence estimates between 25 and 50%. Depression is commonly underdiagnosed and undertreated in people with MS. This qualitative study assessed current practices, as well as facilitators and required resources to improve detection and management of depression in people with MS. METHODS: MS clinicians living in Australia were recruited through MS healthcare provider clinics and networks for online interviews. Interviews were transcribed and coded in NVivo for framework analysis. RESULTS: Participants included 15 MS specialists: nine nurses and six neurologists. Participants appreciated that depression was a common symptom of MS, and that untreated depression impacted patients' wellbeing, medication adherence, capacity for self-care, employment, and interpersonal relationships. Participants did not routinely screen for depression and noted that they lack the time and skills to manage depression once identified, most often recommending patients see their general practitioner. Clinicians recognised that people with MS commonly experience barriers to identifying and managing depressive symptoms, however few clinics provide information or discussion about depression as a symptom of MS with patients. CONCLUSION: Participants indicated a need for evidence-based guidance, more education and training to improve practices including screening for depression, and an urgent need for local referral pathways to affordable and accessible mental health services for people with MS. Findings suggest a need for better collaborative management of depression and improvement of systematic practices related to depression information, screening and treatment support.

Improving the detection and treatment of depression in Australians with multiple sclerosis: A qualitative analysis.

BACKGROUND: Depression is common in people with multiple sclerosis (MS), yet often goes undetected, untreated or undertreated. OBJECTIVE: This qualitative research explored current practices, barriers and facilitators for detection and treatment of depression in Australians with MS. METHODS: Participants were 26 people with MS recruited through social media. Participants completed the Centre for Epidemiological Studies Depression-Revised (CESD-R) scale and in-depth telephone or video interviews. Interviews were analysed using framework analysis. RESULTS: Scores measured on the CESD-R proposed 73% of participants were experiencing severe depression symptoms. Participants reported that depression is not regularly and formally assessed through MS healthcare services and they are offered limited information about depression in MS. Barriers to mental health support included recognition of depression, resistance to treatment and limitations of collaborative support between general practitioners and MS healthcare services. Participants expressed a need for open conversations and information about depression during neurology consultations. CONCLUSION: Based on our findings, improved detection and treatment of depression in people with MS requires: 1) better provision of information about depression for people with MS through healthcare services and community organisations; 2) regular screening and assessment; 3) better healthcare services collaboration to improve management.

Improving smoking cessation support for people with multiple sclerosis: A qualitative analysis of clinicians' views and current practice.

Introduction Smoking is a key modifiable risk factor in multiple sclerosis (MS). MS healthcare providers have a central role informing people of the deleterious effects of smoking on MS progression and promote smoking cessation, yet there is limited information about smoking cessation and support provided by these providers. This study aimed to gain an understanding of MS healthcare providers current practices, barriers and facilitators related to providing smoking cessation support for people with MS. Methods A total of 13 MS nurses and 6 neurologists working in public and private MS clinics across Australia were recruited through professional networks and MS organisations. Telephone interviews were conducted, transcribed and evaluated using framework analysis. Results MS nurses and neurologists reported that they routinely assess smoking status of people with MS at initial appointments and less regularly also at follow-up appointments. Clinicians considered it important to provide information about smoking impact on MS health outcomes and advise to cease smoking, but the content and delivery varies. Beyond this, some clinicians offer referral for smoking cessation support, while others stated this was not their responsibility, especially in light of competing priorities. Many were unsure about referral pathways and options, requiring more information, training and resources. Conclusion Results of this research indicate that there is potential to improve support for MS clinicians to promote smoking cessation among people with MS. Smoking cessation support may include tailored patient resources, clinician training and stronger collaboration with smoking cessation service providers.

Relationship Between Interpersonal Depressive Symptoms and Reduced Amygdala Volume in People with Multiple Sclerosis: Considerations for Clinical Practice.

BACKGROUND: The lifetime prevalence of depression in people with multiple sclerosis (MS) is approximately 50% compared with around 15% in the general population. There is a relationship between depression and quality of life in people with MS and evidence that depression may contribute to disease progression. METHODS: This cross-sectional pilot study assessed the association between depression and regional brain atrophy, including amygdala and hippocampal volume. Forty-nine participants with MS recruited through a hospital MS clinic were administered the Center for Epidemiological Studies Depression Scale Revised (CESD-R) to investigate whether higher endorsements on the items depressive affect and interpersonal symptoms were associated with volumetric magnetic resonance imaging measurements of hippocampal and amygdala atrophy. RESULTS: Regression analysis revealed an association between depression-related interpersonal symptoms and right amygdala volume. No association was found between depression and hippocampal volume. CONCLUSIONS: These results provide preliminary support for a unilateral, biologically based relationship between the right amygdala and characteristic interpersonal depressive symptoms expressed by people with MS and add to the growing body of literature implicating regional brain atrophy in MS-associated depression. Given that the interpersonal subcomponent of the CESD-R measures social functioning, and the neural networks in the amygdala are known to be implicated in processing social stimuli, this research suggests that targeted diagnosis and treatments for depression in people with MS may be particularly beneficial. Further confirmatory research of this relationship is required.

Objective medication adherence and persistence in people with multiple sclerosis: a systematic review, meta-analysis, and meta-regression.

BACKGROUND: Medication adherence is critical for the realization of pharmacotherapy benefits and reduced healthcare expenditure. Studies have shown up to 60% of people with Multiple sclerosis (MS) experience suboptimal medication adherence, which is associated with poorer health outcomes and subsequent discontinuation. The current systematic review reported on objectively measured adherence and discontinuation rates for self-administered oral and injectable disease-modifying therapies (DMTs). OBJECTIVES: To identify whether, in people with MS, the introduction of oral DMTs has improved medication adherence when compared with injectable DMTs. The secondary aim was to report synthesized objectively measured medication adherence and persistence rates for both oral and injectable DMTs in MS across varying study durations. METHODS: Literature searches were conducted through PubMed, Web of Science, Scopus, and PsycINFO. Inclusion criteria were limited to English, peer-reviewed, objective, self-administered DMT articles, published between July 1993 to December 2019. Publications reporting combined intravenous and self-administered DMT data, or that did not account for DMT switching in discontinuation rates, were excluded. Data were synthesized into observation lengths ranging from less than 8 months to greater than 36 months. Meta-analysis and meta-regression were undertaken on both oral and injectable 12-month adherence and discontinuation data. RESULTS: In total, 61 articles were included; 46 articles examined adherence and 26 examined discontinuation. Twelve-month adherence ranged between 53.0% to 89.2% for oral (N = 7) and 47.0% to 77.4% for injectable DMTs (N = 7). Results from the meta-analysis and meta-regression show significantly higher pooled mean medication possession ratio (MPR) adherence for oral DMTs (91.0%) when compared to injectable DMTs (77.0%) over 12 months (ß = -0.146; 95% CI: -0.263 to -0.029). Results indicate major asymmetry across studies (LFK index: -5.18), proposing the presence of significant publication bias. Mean discontinuation over 12 months was between 10.5% to 33.3% for oral (N = 7) and 15.2% to 50.8% for injectable DMTs (N = 10), with meta-analysis results indicating the presence of significant heterogeneity (I2 Injectable: 99.5%; I2 Oral: 93.1%) between studies included in each subgroup. However, no appreciable difference in mean discontinuation rates across groups (Injectable: 27%; 95% Cl: 19.0%-34.0%; Oral: 24%; 95% CI: 17.0%-31.0%) was found. CONCLUSIONS: Medication adherence for oral DMTs suggests a significant improvement compared to adherence for injectable DMTs. No significant difference in discontinuation rates between oral and injectable DMTs was found. Oral DMT adherence and persistence studies are limited, given their relatively recent introduction. Suboptimal medication adherence and discontinuation issues remain present for both oral and injectable DMTs. Future studies would benefit from improved consistency in methodology, such as comparable adherence and persistence definitions. DISCLOSURES: The authors did not receive any funding for this study. Mardan and Hussain have nothing to disclose. Grech reports grants from Merck Pharmaceutical, outside the submitted work. Allan reports grants received from Merck Pharmaceutical outside the submitted work. Allan holds advisory board and consulting positions with Merck and advisory board positions for Bristol Myers Squibb and Novartis, for which Monash Institute of Neurological Diseases receives consulting fees.

Patient-centric decision framework for treatment alterations in patients with Chemotherapy-induced Peripheral Neuropathy (CIPN).

Recently updated American Society of Clinical Oncology (ASCO) guidelines for Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy (CIPN) in Survivors of Adult Cancers make a single recommendation to alter treatment by delaying, decreasing, or discontinuing dosing in patients who develop CIPN during neurotoxic chemotherapy treatment. Dosing guidelines have inconsistent recommendations for when (i.e., what CIPN severity) and how (i.e., delay, decrease, or discontinue) to alter neurotoxic chemotherapy treatment in patients with CIPN. Clinical decision making requires an understanding the benefits and risks of treatment alteration, in addition to consideration of other disease and patient factors. This review summarizes four areas of literature and culminates in a patient-centric decision framework to guide clinicians in helping patients to make treatment alteration decisions. First, we describe the current practice of altering treatment due to CIPN, including treatment alteration recommendations and published rates. Second, we summarize the potential benefits of treatment alteration including the reduction in CIPN severity and persistence. Third, we evaluate the potential risk of treatment alteration in compromising treatment efficacy by reviewing prospective trials comparing dosing regimens and retrospective analyses of the effect of relative dose intensity on efficacy. Fourth, we summarize disease and patient factors that should be considered when making a treatment alteration decision for a patient. We then propose a patient-centric decision framework that clinicians can use to assess an individual patient's current and anticipated future CIPN severity and compare that to their maximum tolerable severity to determine whether they should continue, delay, decrease, or discontinue neurotoxic chemotherapy.

Barriers and motivators for tobacco smoking cessation in people with multiple sclerosis.

INTRODUCTION: Smoking is a key modifiable risk factor for health outcomes of people with multiple sclerosis (MS). Little evidence exists on whether the information and support needs of people with MS who smoke are met. This study aimed to explore knowledge, attitudes and beliefs about smoking and quitting, and quitting support needs in Australian people with MS. METHODS: Current and recent smokers were recruited for phone interviews through social media and newsletters. Interview data were analysed in NVivo using framework analysis. RESULTS: We interviewed 25 people with MS (20 current and five recent smokers). Many participants had little knowledge about the risks of smoking on MS progression. Some reported perceived benefits from smoking on MS symptoms, while others perceived smoking worsening their symptoms. Similarly, quitting was believed to have health benefits, but concerns about withdrawal symptoms and the impact on MS symptoms and relapses were common. Participants reported ambivalence discussing smoking with clinicians; some wanting more information and support, while also feeling shame or guilt. Many participants were asked about their smoking status by MS clinicians, however, the provision of evidence-based information, and referrals to quitting support services was very infrequent. General practitioners were often found helpful and supportive, but participants gave more weight to quit advice from MS clinicians. CONCLUSION: Our results are the first to indicate that smoking cessation needs of Australian people with MS are not met. These findings should be confirmed in a larger sample, but there is potential to investigate whether implementing routine provision of brief advice in MS care, as a coordinated effort between MS researchers, practitioners, consumer advocates and behavioural intervention services, may meet these needs. Further, developing targeted resources and training quit counsellors to provide appropriate information and support specific to people with MS may improve smoking cessation success in people with MS.

Modifiable risk factors for poor health outcomes in multiple sclerosis: The urgent need for research to maximise smoking cessation success.

Tobacco smoking is a well-established risk factor for multiple sclerosis (MS) onset, progression and poor health outcomes in people with MS. Despite smoking being a modifiable risk factor, no research has been undertaken to understand how, or who is best placed, to assess or understand smoking behaviour in people with MS, or how healthcare professionals can best assist people with MS to quit. People with MS may have unique motivators to continue smoking, or unique barriers to smoking cessation, that are not addressed by existing cessation tools. Research is urgently needed in this area if the aim is to maximise health outcomes for all people with MS.

Importance of Coping in the Relationship Between Executive Function and Quality of Life in People with Multiple Sclerosis.

BACKGROUND: Maximizing quality of life (QOL) for people with multiple sclerosis (MS) is a primary focus of health care management professionals. Research has shown a relationship between QOL and a person's coping style and that coping provides an indirect link between cognition and stress, depression, and anxiety in MS. This research assessed whether coping moderates or mediates the relationship between executive function and QOL in people with MS. METHODS: We assessed 107 people with relapsing-remitting (n = 83) or secondary progressive (n = 24) MS using executive function tasks and self-report coping and QOL inventories. RESULTS: Coping strategies that mediated the relationship between executive function and QOL in people with MS included behavioral disengagement, acceptance, growth, and religion, while moderating strategies were denial, active, religion, adaptive, and total coping indices. Less cognitively demanding coping strategies that were related to increased QOL in people with poorer executive function included acceptance, growth, and religion, and maladaptive strategies associated with poorer QOL were behavioral disengagement and denial. CONCLUSIONS: These results suggest that lessening avoidant coping strategies and strengthening use of less cognitively demanding adaptive coping strategies may improve QOL in people with MS who experience deficits in executive function. Consideration should be given to the development of psychoeducation and interventions with this focus.

Neuroprotective Benefits of Antidepressants in Multiple Sclerosis: Are We Missing the Mark?

The potential of antidepressant medication to have a neuroprotective effect for people with multiple sclerosis (MS) has received increased interest in recent years. The possibility of antidepressants, particularly fluoxetine, for potential repurposing to treat primary progressive and secondary progressive MS is of interest as a result of the relative lack of disease-modifying medications for these subtypes. A number of animal studies have found positive results for a neuroprotective effect of antidepressant use in MS, with human studies showing mixed results. These human studies all have a significant limitation: they exclude people with moderate to severe depressive symptoms, a core symptom of MS beyond that of reactive depression. It is likely that reregulation of the common mechanisms in depression and MS, such as inflammation, serotonin, norepinephrine, glutamate and brain-derived neurotropic factor disruption, and hypothalamic-pituitary-thalamic axis dysregulation, are important to the neuroprotective value of antidepressant medication. Given that MS is known for its heterogeneity, the question might be less about whether antidepressant medication provides neuroprotective benefits to people with multiple sclerosis but for whom they provide benefits and whether we are designing studies that will detect a benefit. To answer these questions, studies must include people with MS and depressive symptoms as well as people with relapsing remitting and chronic subtypes.

Target Coping Strategies for Interventions Aimed at Maximizing Psychosocial Adjustment in People with Multiple Sclerosis.

BACKGROUND: The experience of psychological distress is prevalent in people with multiple sclerosis (MS), including high levels of stress, anxiety, and depression. It has been shown that people with MS use less adaptive coping compared with healthy individuals. This study examined the ability of coping strategies to predict maladaptive and adaptive psychosocial outcomes across areas of stress, depression, anxiety, and quality of life (QOL) in people with MS. METHODS: 107 people with MS completed measures of depression (Beck Depression Inventory-II), anxiety (State-Trait Anxiety Inventory), QOL (Multiple Sclerosis Quality of Life-54), stress (Daily Hassles Scale), and coping (COPE inventory). RESULTS: Consistent with expectations, depression, frequency of stress, trait anxiety, and mental health QOL were predicted by adaptive and maladaptive coping styles. Severity of stressful events was predicted by maladaptive, but not adaptive, coping styles. Depression and mental health QOL were most prominently connected to coping use. Emotional preoccupation and venting showed the strongest relationship with poorer psychosocial outcomes, whereas positive reinterpretation and growth seemed to be most beneficial. CONCLUSIONS: The results of this study highlight the importance of intervention programs targeting specific coping strategies to enhance psychosocial adjustment for people with MS.

Executive function is an important consideration for coping strategy use in people with multiple sclerosis.

INTRODUCTION: Executive function deficits are prevalent in people with multiple sclerosis (PwMS), and PwMS use less adaptive coping than healthy controls. This cross-sectional study assessed whether there is a relationship between executive function and coping in PwMS. METHOD: One hundred and seven participants with relapsing remitting or secondary progressive MS (n = 83 and 24, respectively; age M = 48.8 ± 11.1 years) completed measures of coping and executive function. RESULTS: A positive relationship was found between verbal fluency and use of active, emotional, and instrumental social support coping, and total executive function and substance abuse coping. There was a negative relationship between coping strategies and core (social support, acceptance, religion, restraint, and total coping), higher order (denial and humor), and total executive function indices (acceptance, religion, behavioral disengagement, denial, and total coping). CONCLUSION: These directional differences provide support for the importance of specific executive functions in coping strategy utilization. Understanding these relationships will assist psychologists and neuropsychologists with patient psychoeducation, adaptive coping strategy intervention and management for PwMS with reduced executive function ability.

Coping mediates and moderates the relationship between executive functions and psychological adjustment in multiple sclerosis.

OBJECTIVE: To identify the moderating and mediating relationship of different coping strategies between executive function and stress, depression and anxiety in people with multiple sclerosis (PwMS). METHOD: Participants were 107 people with relapsing remitting or secondary progressive multiple sclerosis who were administered tasks of executive function and completed self-report measures of stress, depression, anxiety, and coping. RESULTS: An indirect relationship was found between executive function and psychosocial adjustment through maladaptive coping strategies: behavioral and mental disengagement, and substance abuse; adaptive coping strategies: acceptance, active, positive reinterpretation, and growth, as well as for an index of adaptive coping. In general, a relationship was found between better performance on tasks of executive function and psychosocial adjustment when adaptive coping strategies were low, as opposed to high, or maladaptive coping strategies were high, as opposed to low. Some unexpected findings are also discussed. CONCLUSION: Executive function and psychosocial adjustment is mediated and moderated by coping strategies used by PwMS. Well-preserved executive function provides relative protection from poorer adjustment in the presence of high maladaptive or low adaptive coping. PwMS who perform poorly on tasks of executive function benefit from using less cognitively demanding adaptive coping strategies to enhance adjustment outcomes and further research in this area would be advantageous to underpin effective intervention strategies.