International journal of MS care最新文献

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.

Background: Sleep disturbances are common in individuals with multiple sclerosis. The objective of this systematic review was to determine effective behavioral interventions to improve their sleep.

Methods: Literature searches were performed in December 2021 in Ovid MEDLINE, Elsevier Embase, and Web of Science, along with hand searching for grey literature and cited references. Four reviewers independently reviewed titles and abstracts (2 reviewers for each article; n = 830) and the full-text articles (n = 81). Consensus for inclusion was achieved by a fifth reviewer. Thirty-seven articles were eligible for inclusion. Four reviewers extracted relevant data from each study (2 reviewers for each article) using a standard data extraction table. Consensus was achieved for completeness and accuracy of the data extraction table by a fifth reviewer. The same 4 reviewers conducted a quality appraisal of each article to assess the risk of bias and quality of the articles, and consensus was achieved by a fifth reviewer as needed. Descriptive data were used for types of interventions, sleep outcomes, results, and key components across interventions.

Results: Overall, the cognitive behavioral therapy for insomnia, cognitive behavioral therapy/psychotherapy, and education/self-management support interventions reported positive improvements in sleep outcomes. Quality appraisal scores ranged from low to high, indicating potential for bias.

Conclusions: Variability in the intervention type, intervention dose, outcomes used, training/expertise of interventionist, specific sample, and study quality made it difficult to compare and synthesize results. Further research is necessary to demonstrate the efficacy of most of the interventions.

Background: Individuals with multiple sclerosis (MS) may experience a variety of visible and invisible symptoms and, as they age, comorbidities related and unrelated to their MS. This can result in a complex medication regimen that includes disease-modifying therapies, symptom management drugs, and prescriptions for other comorbid disorders.

Methods: We reviewed the existing literature to discover how to optimally integrate neurology clinical pharmacists into the MS care team and how clinical pharmacists can directly support both providers and patients through their expertise in pharmacology and medication management.

Results: With approaches founded on a shared decision-making process alongside neurology providers, patients, and care partners, clinical pharmacists can help meet the complex challenges of MS care in a variety of ways. Especially within MS clinics, they are well positioned to enhance current neurology practices given their extensive training in comprehensive medication management and their ability to identify nuances in medication management to promote pharmacovigilance and patient-centered care.

Conclusions: Neurology clinical pharmacists bring multifaceted medication management and patient counseling and education skills to the MS care team and can support the shared decision-making process by serving as an accessible resource for patients and clinicians. By building trusted partnerships between neurology providers and clinical pharmacists, MS care teams can achieve effective and efficient patient care. Future research should compare clinical and patient-reported outcomes between patients receiving standard care and those receiving multidisciplinary, pharmacist-integrated care.

Background: Multiple sclerosis (MS) indirect patient-care time is often underreported and uncompensated. Data on time spent on indirect and direct care by MS providers is lacking.

Methods: A survey was designed to understand the practice patterns among MS providers in the United States, including time spent on direct and indirect patient care, as well as managing electronic medical record portal messages. The National MS Society and the American Academy of Neurology facilitated the distribution of the survey to MS providers.

Results: Most providers spent at least 1 hour on new and at least 30 minutes on follow-up direct patient care. For indirect patient care, 77% of providers spent more than 1 hour and 57% spent more than 2 hours per day. While some providers have support staff to help with portal messages, many do not have protected time or compensation for portal messages.

Conclusions: Multiple sclerosis providers spent a higher-than-average time on direct and indirect patient care tasks, including portal messages, and most lack protected time or compensation for portal messages. These results highlight the potential impact of indirect patient care (notably portal messages) on provider workload and burnout. Better support, protected time and/or compensation for indirect patient care can help ease physician burden and decrease burnout.

Background: Questions asked by patients with primary progressive multiple sclerosis (PPMS) during patient-initiated MS nurse consultations may contain salient information that can help health care providers understand their needs, which, in turn, can help tailor counseling and treatment.

Methods: Records of all patients with PPMS visiting the MS center of a large teaching hospital in the Netherlands between January 2007 and January 2021 were studied retrospectively. Number and type (scheduled or patient initiated) of MS nurse consultations, reasons for consultations (in prespecified categories), and frequency of subsequent referrals were registered. Association between factors (living with partner, Expanded Disability Status Scale score, comorbidities, age, sex) and number of patient-initiated consultations was studied using negative binomial regression analysis.

Results: In total, 98 patients with PPMS were included, with 720 MS nurse consultations during follow-up (median duration, 8.1 years), of which 274 (38%) were patient initiated. Patients had a broad spectrum of reasons to contact MS nurses. The most common categories were treatment (36%) and micturition and defecation (31%). Patients living without a partner (incidence rate ratio, 2.340; 95% CI, 1.057-5.178) and male patients (incidence rate ratio, 1.890; 95% CI, 0.925-3.861) consulted MS nurses more frequently. The MS nurses made 146 referrals (20% of all contacts); 59 were after patient-initiated consultation (22%). The most frequent referrals were to neurologists, urologists, and rehabilitation specialists.

Conclusions: Multiple sclerosis nurses have a pivotal role in PPMS care, especially for patients living without a partner and male patients. Recurring questions about (new) treatment options illustrate the pressing need for highly effective treatment. Micturition and defecation problems are also a considerable concern and warrant close monitoring.