Multiple Sclerosis Specialist Nurses Research Articles

Multiple sclerosis infusion service during the pandemic: service improvement

Background: Providing care to multiple sclerosis (MS) patients posed a challenge during the COVID-19 pandemic. Surge plans necessitated an abrupt change of facility for the infusion service, from an acute to a non-acute site. Aims: To assess patient satisfaction with the MS infusion service at a new location supervised by MS specialist nurses, in comparison with previous arrangements. Methods: Collection of anonymous patient surveys to assess patient demographics and levels of satisfaction across various service domains. Findings: Overall, 97% recorded a satisfaction score of ≥8/10. Key areas of improvement included difficulty parking, difficulty accessing the unit, appointment punctuality and comfort. Thematic analysis revealed several key improvement areas such as access to MS nursing knowledge, cannulation and punctuality. Conclusion: The urgently relocated service, with better access and specialist nursing input, was associated with improvements in patient experience. Despite unprecedented pressures, unique opportunities resulted in an overall improvement to the MS infusion service.

Nursing care competencies for multiple sclerosis

The UK Multiple Sclerosis Specialist Nurse Association's competency document, which was originally developed in 2008, aims to educate and increase awareness of multiple sclerosis among both specialist nurses and other non-specialist professionals. The latest document—revised in 2024—aims to showcase the most up-to-date information and serves not only as daily practice guidelines, but also promotes safe and effective practice in multiple sclerosis care.

Quantifying the administration and monitoring time burden of several disease-modifying therapies for relapsing multiple sclerosis in the United Kingdom: A time and motion study

BackgroundThe treatment landscape for relapsing multiple sclerosis (MS) has changed dramatically in recent decades, including an increasing number of high-efficacy disease-modifying therapies (DMTs) with varied administration and monitoring requirements. Coupled with greater focus on earlier treatment, these factors have resulted in stretching of the capacity of MS specialist services and allied healthcare professionals (HCPs). To assist with the effective planning of MS services in the UK NHS, this study quantified the administration and monitoring time burden associated with high-efficacy DMTs (alemtuzumab, cladribine tablets, fingolimod, natalizumab, and ocrelizumab) for relapsing MS. MethodsA Time and Motion (T&M) study was conducted across four MS centres in the UK, over 3–4 months per centre (Aug 2019–Feb 2021). Time dedicated by HCPs (including but not limited to neurologists, MS specialist nurses, infusion nurses, and healthcare assistants) to pre-specified drug administration and monitoring activities, elicited during pre-study interviews at each centre, was assessed for each of the selected DMTs. Administration activities included: installing peripheral access; pre-medication administration (if needed); preparing drug for infusion; infusion initiation, monitoring, and disconnection; and patient monitoring post-infusion. Monitoring activities included: booking appointments for blood draws; blood draw; retrieval and review of blood results; maintaining blood records and follow-up with the patient; checking availability of MRI results and follow-up with the patient; booking appointments for neurologist or nurse consultations; and checking patient files prior to clinic visits. A T&M model was built using observational T&M study results, data obtained through pre-study interviews, as well as stipulated monitoring intervals from relevant Summaries of Product Characteristics for the selected DMTs, to estimate active HCP time with each DMT, extrapolated over a period of 4 years per-patient. ResultsFor oral DMTs, projected total active HCP time (monitoring only) per-patient over 4 years was 14.7 h for cladribine tablets and 19.2 h for fingolimod. For infused DMTs, total time (administration and monitoring) for alemtuzumab was 37.7 h (6.0 and 31.6 h, respectively), 48.1 h for natalizumab (17.4 and 30.8 h, respectively), and 23.5 h for ocrelizumab (6.1 and 17.4 h, respectively). ConclusionsWhile active HCP time varied across centres, infused DMTs were projected to require the greatest amount of HCP time associated with administration and monitoring over 4 years versus oral DMTs. These findings may assist MS-specific HCPs in planning and delivering the equitable provision of DMT services for patients with relapsing MS.

Exploring specialist nurse clinic appointments: supporting a person with multiple sclerosis to manage spasticity and spasms

Background: Managing clinic appointments effectively and efficiently are a fundamental part of being a multiple sclerosis (MS) specialist nurse (MSSN). Opportunities to practice these skills can be limited, which can be daunting for nurses new into the speciality. Aim: This article explores the management of spasticity and spasms and how a MSSN can effectively use time in a clinic appointment to complete a holistic assessment and support people with MS (PwMS) to manage their spasticity and spasms. Method: Narrative methodology was used to synthesise insights from appointments in a specialist nurse clinic, where individuals with MS needed support to manage spasticity and spasms. The insights were constructed into a reflexive narrative and are presented in this article as one clinic appointment. Findings: Strategies for MSSNs to consider during their clinics and spasticity management practices are suggested. These include clinic preparation, verbal and physical assessments, measuring, timely referral to other multidisciplinary members and educating PwMS, such as educating them on the possible triggers that can exacerbate spasticity and spasms, the importance of exercise and stretching, and monitoring the effectiveness of symptomatic treatments, including drug interventions. Conclusion: MSSNs have a vital role in supporting PwMS to manage their spasticity and spasms throughout the disease trajectory. Developing expertise in effectively using time in clinic appointments will benefit the outcomes for PwMS, the individual nurse and the healthcare organisation.

2023 and beyond

As the British Journal of Neuroscience Nursing enters it's third year of publishing a supplement dedicated to multiple sclerosis (MS), Paru Naik gives thanks to the readers and contributors of the journal. Additionally, Paru reflects on the different ways that the MS Trust are helping to tackle the tremendous pressures that MS Specialist nurses are currently facing.

Digital Self-monitoring of Multiple Sclerosis: Interview Study With Dutch Health Care Providers on the Expected New Configuration of Roles and Responsibilities.

BackgroundDigital self-monitoring allows patients to produce and share personal health data collected at home. This creates a novel situation in which health care providers and patients must engage in a reconfiguration of roles and responsibilities. Although existing research pays considerable attention to the perceptions of patients regarding digital self-monitoring, less attention has been paid to the needs, wishes, and concerns of health care providers. As several companies and public institutions are developing and testing digital self-monitoring at the time of writing, it is timely and relevant to explore how health care providers envision using these technologies in their daily work practices. Our findings can be considered in decision-making processes concerning the further development and implementation of digital self-monitoring.ObjectiveThis study aims to explore how health care providers envisage using smartphone apps for digital self-monitoring of multiple sclerosis (MS) in their daily work practices, with a particular focus on physician-patient communication and on how health care providers respond to self-monitoring data and delegate tasks and responsibilities to patients.MethodsWe conducted semistructured in-depth interviews with 14 MS health care providers: 4 neurologists, 7 MS specialist nurses, and 3 rehabilitation professionals. They are affiliated with 3 different hospitals in the Netherlands that will participate in a pilot study to assess the efficiency and effectiveness of a specific smartphone app for self-monitoring.ResultsThe interviewed health care providers seemed willing to use these smartphone apps and valued the quantitative data they produce that can complement the narratives that patients provide during medical appointments. The health care providers primarily want to use digital self-monitoring via prescription, meaning that they want a standardized smartphone app and want to act as its gatekeepers. Furthermore, they envisioned delegating particular tasks and responsibilities to patients via digital self-monitoring, such as sharing data with the health care providers or acting on the data, if necessary. The health care providers expected patients to become more proactive in the management of their disease. However, they also acknowledged that not all patients are willing or able to use digital self-monitoring apps and were concerned about the potential psychological and emotional burden on patients caused by this technology.ConclusionsOur findings show that health care providers envisage a particular type of patient empowerment and personalized health care in which tensions arise between health care providers acting as gatekeepers and patient autonomy, between patient empowerment and patient disempowerment, and between the weight given to quantitative objective data and that given to patients’ subjective experiences. In future research, it would be very interesting to investigate the actual experiences of health care providers with regard to digital self-monitoring to ascertain how the tensions mentioned in this paper play out in practice.

A new year and new ways of working

Lucy Ruscoe offers an update from the UK Multiple Sclerosis Specialist Nurse Association (UKMSSNA). Including the new co-chairs, policy advisor and plans for the new year ahead.

A new energy in multiple sclerosis nursing

The UK Multiple Sclerosis Specialist Nurse Association pulls together with a new energy on developing projects for 2021, initiating recovery from the impact of COVID-19 on multiple sclerosis (MS) nursing services. Developing an MS specialist nurse competency document is at the forefront of the association's work, to aid sustainability and growth within the workforce. Emily Whisker elaborates.

An introduction to the UKMSSNA and the challenges of 2020

Emily Whisker offers an introduction and background to the UK Multiple Sclerosis Specialist Nurse Association (UKMSSNA) and its committee members. She looks at the experiences of the multiple sclerosis specialist nurse community during the pandemic, including the way in which negative experiences were overcome.

Modeling the Multiple Sclerosis Specialist Nurse Workforce by Determination of Optimum Caseloads in the United Kingdom.

It is estimated that there are more than 100,000 people in the United Kingdom who have multiple sclerosis (MS). Patient experience and outcome are improved by access to a specialist nursing service. The aim of this study was to perform demand modeling to understand the need for MS nursing interventions, and thus inform modeling of the future UK MS nursing workforce. Existing national data and specific workload and service data were collected from 163 MS specialist nurses who completed a questionnaire on activity and complexity of work both done and left undone. Data were received from across all of the United Kingdom. Twenty-nine percent of respondents were specialist nurses in the field for 3 years or less. Unpaid overtime was regularly performed by 83.4% of respondents. The MS specialist nurse was part of all areas of the patient journey. Areas of work left undone were psychological interventions, physical assessments, social interventions/benefits, and recommending or prescribing medications. The current recommended caseload of 358 people with MS per full-time equivalent seems to be too high, with a considerable amount of work left undone, particularly psychosocial care. Factors such as travel time, complexity of caseload, changing drug therapies, and societal issues such as the benefits system contributed to driving demand/workload.

Multiple Sclerosis Relapse Recognition: Using Co-Design to Improve Patient Self-Reports

People living with multiple sclerosis (MS) are encouraged to report suspected relapses to their MS specialist nurse (MSN) so that appropriate care can be co-ordinated. However, this is not always straightforward, as MS relapses can be difficult for patients to recognise and, sometimes, complicated even for clinicians, especially GPs, to diagnose; this is recognised as a factor contributing to under-reporting of symptoms. This article describes the outcomes of a service improvement project that used co-design methodology to gain an understanding of the factors influencing relapse under-reporting, leading to the redesign of an existing MS relapse service and the development of a patient self-reporting tool and a complementary tool designed to guide relapse management for GPs.

THUR 180 Patient support program for RRMS patients treated with DMF

IntroductionIn the UK, the number of multiple sclerosis (MS) patients far exceeds the capacity of MS specialist nurses (MSSNs).MethodsBiogen and IQVIA developed a remote, nurse-led, script-based telephone line providing educational assistance and supporting treatment adherence among relapsing-remitting MS (RRMS) adult patients receiving delayed-release dimethyl fumarate (DMF; TECFIDERA). Following DMF initiation, 8 calls are scheduled over the first 3 months, followed by quarterly calls for the remainder of the first treatment year. The program began in March 2015; a new online treatment satisfaction survey started in July 2017.ResultsBased on summarized call data through November 2017, 941 total patients were enrolled from 136 UK hospitals, with a mean (median, range) of 6.9 (2, 1–117) patients/hospital. An average of 11.5 calls/patient were received. Across all 11 scheduled calls, the average time/call was 8.3 min. Over 33 months, cumulative DMF discontinuation among enrolled patients was 15.7%. Between July and November 2017, 31 patients on treatment for ≥1 year completed satisfaction surveys; 74% reported scores ≥4 (scale: 1 [poor] to 5 [excellent]).DiscussionThis program has been widely used and positively received across the UK by DMF-treated patients and may reduce the burden on MSSNs.SupportBiogen. Disclosures on poster.

Clinical Validation of the UKMS Register Minimal Dataset utilising Natural Language Processing

ABSTRACT
 ObjectivesThe UK MS Register is a research project that aims to capture real world data about living with Multiple Sclerosis(MS) in the UK. Launched in 2011, identified data sources were: Directly from People with MS (PwMS) via the internet, from NHS treatment centers via ‘traditional’ database capture and by linkage to routine datasets from the SAIL databank.
 Data received from the NHS, though ‘gold standard’ in terms of diagnosis, is dependent on clinical staff finding both time and information to enter into a clinical system. System implementations across the NHS are variable, as is clinical time. Therefore, we looked to other complementary methodologies.
 ApproachThe Clix enrich natural language processing (NLP) software was chosen to see if it could capture a portion of the MS Register minimum clinical dataset, the software matches clinical phrases against SNOMED-CT.40 letters, from 2 NHS Trusts, from 28 patients were loaded. The letters were a mix of MS patients with differing disease subtypes and were dictated by Neurologists, Specialist General Practitioners and MS Specialist Nurses. 20 of the letters were in docx format and 20 as PDF.
 The letters were parsed by a domain expert for clinical content, scored by data item for sensitivity and specificity. Next the output from the software was scored by another researcher to see if the 12 relevant clinical concepts from the Register dataset had been elicited. Lastly a ruleset was created to look for particular clinical concepts and scored in the same way.
 ResultsOf the 40 letters one failed to load, the rest were analysed for the specific data items. Date related items were clearly challenging, with only 7% of appointment dates being matched and 22% for date of diagnosis. MS Type (93.3%) and EDSS score (93.75%) were well recognised, additionally symptoms of MS that would be poorly reported in traditional databases were recognised, with fatigue being well highlighted (78.5%) and gait and walking issues (68.7%)
 Of concern, were a number of false positive results in DMT’s with 15% patients being identified as being on a DMT when this was just being ‘considered’.
 ConclusionThe NLP pathway could be extremely useful for obtaining hard to capture clinical data for the Register. Further work is needed to reduce errors, even with the current minimal configuration, it's possible to ascertain MS Type, functional score of MS, current medication and potentially disabling symptomology within the condition.

A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy.

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi-structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help-seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person-centredness. PwMS and professionals identified that MS-related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient-centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.

Meeting the mental health needs of people with multiple sclerosis: a qualitative study of patients and professionals

Purpose: To explore perspectives and experiences of people with multiple sclerosis (MS) and health care professionals of mental health support for MS in the UK.Method: 24 people with MS, 13 practice nurses, 12 general practitioners (GPs) and 9 MS specialist nurses were recruited through community groups and primary care practices across North West England. Semi-structured interviews were conducted, and data analyzed thematically using constant comparative analysis within and across the data sets. The theoretical framework of candidacy was used to interrogate data.Results: Four themes were identified: candidates for care, management choices, defining roles, and permeability and responsiveness.Discussion: Candidacy for care, and symptom management, depended on the framing of symptoms through a social or medical model of depression. Normalizing symptoms could prevent help-seeking by patients. Reported referral behavior varied by professional group, based on perceived remit, competency and training needs. GPs were perceived by patients and other professionals as central for management of mental health needs in MS, but may not perceive this role themselves, suggesting a need for increased knowledge, training, and improved access to specialist care.Implications for RehabilitationAnxiety and depression are common in people with MS.Management of mental health needs in people with MS relies on complex decisions made by both people with MS and health care professionals.General practitioners may play a key role in the ongoing management of mental health needs of people with MS.

Succession planning: who can follow on from you?

British Journal of Neuroscience NursingVol. 11, No. 6 Service UpdateSuccession planning: who can follow on from you?Debbie QuinnDebbie QuinnSearch for more papers by this authorDebbie QuinnPublished Online:26 Dec 2015https://doi.org/10.12968/bjnn.2015.11.6.286AboutSectionsView articleView Full TextPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack CitationsPermissions ShareShare onFacebookTwitterLinked InEmail View article References Age UK (2015) Later Life in the UK. http://tinyurl.com/a83tvs6 (accessed 7 December 2015) Google ScholarBonczek ME, Woodard EK (2006) Who'll replace you when you are gone? Nurs Manage 37(8): 31–4 Crossref, Google ScholarBowen DJ (2014) The growing importance of succession planning. Healthc Exec 29(4): 8 Google ScholarCentre for Workforce Intelligence (2013) Future nursing workforce projections—starting the discussion. http://tinyurl.com/nnllcmb (accessed 7 December 2015) Google ScholarCoughlin C, Hogan P (2008) Succession planning: after you, then who? Nurs Manage 39(11): 40–6 Crossref, Google ScholarCurrie K, Grundy M (2011) Building foundations for the future: the NHS Scotland advanced practice succession planning development pathway. J Nurs Manag 19(7): 933–42 Crossref, Google ScholarKurec AS (2012) Succession planning: a forgotten strategy. Clin Leaders Manag Rev 26(4): 22–5 Google ScholarLeary A, Quinn D, Bowen A (2015) Impact of proactive case management by multiple sclerosis specialist nurses on use of unscheduled care and emergency presentation in multiple sclerosis: a case study. Int J MS Care 17(4): 159–63 Crossref, Google ScholarMS Trust (2012) Defining the value of MS Specialist Nurses. http://tinyurl.com/obft3ul (accessed 7 December 2015) Google ScholarQuinn D (2011) A collaborate care pathway to reduce multiple sclerosis admissions to secondary care. British Journal of Neuroscience Nursing 7(2): 497–9 Link, Google ScholarRaftery C (2013) Nurse practitioner succession planning: forward thinking or just an after thought? Aust Health Rev 37(5): 585–7 Crossref, Google ScholarRoyal College of Nursing (2014) An uncertain future—The UK nursing labour market review 2014. http://tinyurl.com/pwsm5c9 (accessed 7 December 2015) Google ScholarSobol MR, Harkins P, Conley T (eds.) (2007) Linkage Inc's best practices for succession planning. In: Mateso P (2010) Understanding succession planning and management efforts at Midwester University: a mixed methods study. http://tinyurl.com/oybfl7m (accessed 7 December 2015) Google Scholar FiguresReferencesRelatedDetails 2 December 2015Volume 11Issue 6ISSN (print): 1747-0307ISSN (online): 2052-2800 Metrics History Published online 26 December 2015 Published in print 2 December 2015 Information© MA Healthcare LimitedAcknowledgementsThe author would like to thank John Adams, Honoury Lecturer Anglian Ruskin University and Gary Meades, Library Services Manager at Northamptonshire Healthcare NHS Foundation TrustPDF download

Modelling the complex activity of multiple sclerosis specialist nurses in England

Background: Specialist advanced practice nursing in multiple sclerosis (MS) has evolved as a complex activity driven by patient and carer needs. The purpose of this study was to understand the complexity of expert nursing in MS. Methods: Knowledge discovery through data was the underpinning framework. A bespoke data collection tool was used that originated from previously modelled systems. Data was collected and mined. Results: As many as 9050 events over 150 days were collected. No events were excluded from analysis. The work of specialist nurses in MS is complex in terms of the physical (43% of interventions) and psycho-social care (32% of interventions). More than two-fifths (42%) of interventions were delivered over the telephone. Conclusion: The work of nurses specialising in MS care is complex and multidimensional. An understanding of this complexity can be used to establish key performance indicators, optimum caseload calculations and economic evaluation.

Impact of Proactive Case Management by Multiple Sclerosis Specialist Nurses on Use of Unscheduled Care and Emergency Presentation in Multiple Sclerosis: A Case Study.

Multiple sclerosis (MS) affects approximately 100,000 people in the United Kingdom, with rising emergency admissions to the hospital. The multiple sclerosis specialist nurse plays a pivotal role in managing MS care in the United Kingdom, and there is anecdotal evidence that this role can help avoid emergency presentations and unnecessary hospital admissions. A retrospective service evaluation took place in one established MS nursing service. The impact of the introduction of proactive nurse-led management and a rapid response service on rates of emergency presentation, hospital admission, and bed use was examined. The primary intervention was the introduction of extra nursing hours (6 hours per week) and the reallocation of some routine administrative duties, which allowed the service to move to a proactive management model aimed at avoiding the need for unplanned care. In addition, a care pathway was implemented in the emergency department for patients with MS who did present. Reduction in utilization was from a mean of 2700 bed-days per year (2002-2006) to a mean of 198 bed-days per year (2007-2013). During a 10-year period, moving from reactive management to proactive management demonstrated an increase in complex specialist nursing interventions and led to a decrease in emergency presentation and bed use at the local acute-care center.

Managing fatigue in adults with multiple sclerosis.

Fatigue is one of the most common symptoms experienced by people with multiple sclerosis (MS) and has a significant effect on all aspects of daily living and on quality of life. It is important for healthcare professionals working with patients with MS to identify fatigue where present and to be able to offer clinically effective treatment options. This article explores assessment and measurement of fatigue, evidence-based pharmacological and non-pharmacological treatments for managing fatigue and the role of MS specialist nurses and therapists.

Modelling sustainable caseloads for MS specialist nurses

Background: There are 245 Multiple Sclerosis (MS) specialist nurses (MSSNs) across the UK, with variable caseloads, suggesting inequitable and, where caseloads are particularly high, inadequate provision. Aim: The MS Trust set out to establish a ‘sustainable’ caseload for an MS specialist nurse, providing a high-quality, proactive service to patients with MS throughout the disease trajectory. Method: An expert consensus group agreed standards for MSSN services and assumptions about their working patterns and practices; this process was informed by ‘real world’ data from 40 MSSNs taking part in the MS Trust GEMSS programme. A simple model was then used to determine the sustainable number of cases an MSSN could manage. Results: The model showed that a caseload of 358 people with MS per full-time specialist nurse is sustainable. Conclusions: A number of conditions must be met, including well thought out job plans, sufficient administrative support, an effective home visit policy and a high level of use of clinic capacity.