Cover of Evidence reviews for coordination of care: the role of MS nurse specialists and other healthcare professionals

Evidence reviews for coordination of care: the role of MS nurse specialists and other healthcare professionals

Multiple sclerosis in adults: management

Evidence review B

NICE Guideline, No. 220

London: National Institute for Health and Care Excellence (NICE); .
ISBN-13: 978-1-4731-4607-5
Copyright © NICE 2022.

1. Coordination of care: the role of MS nurse specialists and other healthcare professionals

1.1. Review question

Effectiveness: What is the clinical and cost effectiveness of processes of care, including the role of MS specialist nurses and other healthcare professionals, to improve care coordination and health outcomes in adults with MS?

Qualitative: What information, education and support do adults with MS (themes relating to coordination of care only) and their families and carers find most useful?

1.1.1. Introduction

People with MS face a variety of symptoms and disabilities that arise unpredictably and change over time. Their physical, emotional and social needs may therefore require action from more than one health professional at any time and it’s important that these interventions are timely and co-ordinated.

A variety of models have been developed to address this need, but it’s recognised some people with MS still find it difficult to access treatment, advice and support from the right people when they need it most.

The importance of adequately co-ordinated, appropriate and comprehensive care is widely acknowledged and is a function for many people with MS undertaken by a MS Specialist Nurse or other health care professional, but guidance is still needed on the processes or roles that would deliver this most effectively.

1.1.2. Summary of the protocol

For full details see the review protocol in Appendix A.

Table 1. PICO characteristics of effectiveness review question.

Table 1

PICO characteristics of effectiveness review question.

Table 2. PICO characteristics of qualitative review question.

Table 2

PICO characteristics of qualitative review question.

1.1.3. Methods and process

This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual. Methods specific to this review question are described in the review protocol in appendix A and the methods document.

Declarations of interest were recorded according to NICE’s conflicts of interest policy.

The evidence from the qualitative review on information and support was combined with this evidence review after the protocol was drafted. The qualitative evidence review was conducted to provide further detail of how coordinated care could be delivered. For details of the search strategy and evidence tables for the qualitative review see evidence review A.

A number of studies have been identified that report on the value of the MS specialist nurse (Mynors 2012, Mynors 2015, Bowen 2016, Willmington 2017, Leary 2015, Hannan 2018, Punshon 2021, Hopper 2020)3, 13, 14, 20, 27–29, 36. These were identified through a review of the evidence or the call for evidence (see section 1.1.4.2). None of these studies were included mainly due to the absence of a comparator. For full details of exclusion see Appendix J.

1.1.4. Effectiveness evidence

1.1.4.1. Included studies

Two non-randomised studies were included. One compared standard clinical service at 4 MS centres, each involving an MS nurse, to standard clinical service at 2 centres not involving an MS specialist nurse10 and the other study compared a multidisciplinary MS care protocol to ‘traditional’ care16.

These studies are summarised in Table 2 below. Evidence from these studies is summarised in section 1.1.6 on the summary of effectiveness evidence section.

See also the study selection flow chart in Appendix C and study evidence tables in Appendix D.

Call for evidence

The committee identified coordination of care as an area of the scope with limited published evidence. The committee were aware of reports and studies assessing the role of the MS nurse specialist that are currently being conducted but not published or completed but not published. As this review is of high priority for health economic modelling and is a topic where there is limited published evidence, the committee proposed a call for evidence to identify any relevant literature not identified in the searches. The committee agreed to consider a wider variety of evidence to inform their decision making including non-randomised trials, reports, audits and surveys and included these in the call for evidence. Submissions were received from 18 separate organisations or individuals consisting of a variety of reports, commissioned audits or references to publications. All documents and references were checked for relevance to the review question according to the quantitative clinical review protocol. No relevant clinical evidence was obtained that matched the quantitative review protocol, but four reports were summarised as part of the health economic evidence section (see 1.1.10 Summary of health economic studies included in the qualitative evidence). Some references to qualitative studies were submitted and these had already been identified in the search for the information and support for patients (evidence review A). See excluded studies from the call for evidence in Table 20 in Appendix J.

Qualitative evidence

Qualitative evidence on patient and carer views and their perceptions on coordination of care have been included as part of the review on the information and support needs for patients, families and carers. Themes identified relevant to coordination of care have been included in this review document, but evidence tables and other information such as clinical evidence selection is provided in evidence review A. The committee considered the evidence from both the quantitative evidence and qualitative evidence reviews together when making their recommendations. The quantitative evidence review was used to inform recommendations on the clinical and cost effectiveness of different ways of delivering co-ordinated care. The qualitative review was used to add further detail to these recommendations, for example what roles and functions and health professional may have to fulfil. The findings from these two reviews are therefore presented together in this evidence review. Included studies and findings from this qualitative evidence is presented in this report.

In the qualitative review, four studies were questionnaire-based but had a qualitative component (for example, open questions where qualitative responses were required) that was analysed qualitatively and these were included alongside the other included studies which were interview-based (sixteen studies), focus group-based (three studies) or involved a mixture of focus groups and interviews (two studies).

See evidence review A for evidence tables for qualitative evidence.

1.1.4.2. Excluded studies
Differences to the review on coordination of care in CG186

This question has a different approach to the review on coordination of care in the previous NICE guideline (2014) (CG186), and the following studies were excluded from this review; Kirker 199518, Wilson 199843 and Johnson 200317 were excluded because they were non comparative studies, Warner 200541 was specific to MS nurses administering IV methylprednisolone, and Pozzilli 200235 compared home-based MDT to usual care. This study did include a co-ordinating single point of contact, but it was a telephone operator and not an HCP.

See the excluded studies list in Appendix J.

1.1.5. Summary of studies included in the effectiveness evidence

Table 3. Summary of studies included in the evidence review.

Table 3

Summary of studies included in the evidence review.

1.1.6. Summary of the effectiveness evidence

A meta-analysis of the data was not appropriate due significant differences in interventions, comparators, populations, study designs as well as reporting of the data. Therefore, a narrative summary including summary tables are presented separately for each study.

Forbes 2006

This study compared clinical service at 4 MS centres with established MS nurse specialist programme, to clinical service at 2 centres where an MS specialist nurse role had not been established.

Table 4. Differences in resource utilisation and care processes in groups involving an MS nurse and adults with MS in groups not involving an MS nurse.

Table 4

Differences in resource utilisation and care processes in groups involving an MS nurse and adults with MS in groups not involving an MS nurse.

Quality of life and function at 24 months were generally poorer in the MS nurse group than the groups without an MS nurse after adjustment for baseline values. The uncertainty of the direction of the effect was high, except for SF36 general health and SF 36 energy vitality, where a clear effect favouring the group without MS nurses was observed. Table 5 and Table 6 summarise this information:

Table 5. Difference in quality of life between adults with MS in groups involving an MS nurse and adults with MS in groups not invo ving an MS nurse.

Table 5

Difference in quality of life between adults with MS in groups involving an MS nurse and adults with MS in groups not invo ving an MS nurse.

Table 6. Difference in function between adults with MS in groups involving an MS nurse and adults with MS in groups not involving an MS nurse.

Table 6

Difference in function between adults with MS in groups involving an MS nurse and adults with MS in groups not involving an MS nurse.

Jansen 2006

This prospective cohort study compared a multidisciplinary MS care protocol to ‘traditional’ care. Data were not reported but both groups were reported to have similar judgements of co-ordination of care at follow up.

In terms of healthcare use, there were differences at baseline between groups for use of rehab specialist, nurse specialist and physical therapist but no adjustments were made for these differences. Therefore, it is possible that ten-month findings were confounded by these baseline differences.

Table 7. Healthcare use in the multidisciplinary and traditional care groups.

Table 7

Healthcare use in the multidisciplinary and traditional care groups.

The multidisciplinary care group people experienced better quality of life at 10 months in terms of feeling more energetic and vital, and showing fewer changes in general health. It is unclear, however, whether these changes in general health were adverse changes or not. This analysis was adjusted for baseline differences in quality of life (Table 8).

Table 8. Quality of life in the multidisciplinary and traditional care groups.

Table 8

Quality of life in the multidisciplinary and traditional care groups.

1.1.7. Qualitative evidence

1.1.7.1. Included studies
General MS population – coordination of care-related themes

The qualitative review on information and support included twenty-six studies (from twenty-seven papers) that covered some themes relevant to coordination of care in the general MS population. The studies included in this section varied in terms of the population and aims. Some focused specifically on coordination of care areas (for example, getting opinions on specific roles such as MS or neurological nurses) and others had more general aims but contained some discussion of coordination of care issues. All but three of the studies were themes reported solely from the perspective of the person with MS or condition; of the remaining three studies, one reported family/carer perspectives only while the other two reported perspectives of both people with MS and family/informal caregivers. Most studies were small, with <100 people included; the exceptions were three studies (n=445–757) where the qualitative component was only through free-text responses to questionnaire, rather than using formal qualitative methods such as interviews or focus groups. One study1 that was included aimed to identify experiences of people with long-term neurological conditions and the roles of neurological nurses in their care, which included a proportion of people with MS. Despite being a mixed population, this study was judged by the committee to be relevant to include but there were minor concerns about relevance. Studies that were not based in the UK9, 12, 19, 21, 23, 24, 32–34, 37–39 were also considered to have minor concerns about relevance for this section of the review, given that coordination of care may vary across countries and experiences may therefore differ. Additionally, one study18 looking at the effect of a single MS nurse was considered to have moderate concerns about relevance as it was published in 1995 and roles and experiences may have changed substantially since that time.

1.1.8. Summary of studies included in the qualitative evidence

Included studies tables are presented below. See Appendix D in evidence review A for full evidence tables.

General MS population – coordination of care themes
Table 9. Summary of studies included in the evidence review.

Table 9

Summary of studies included in the evidence review.

1.1.9. Summary of qualitative evidence

Interpretations and explanations from the included studies were synthesised to gain an insight into themes present across the body of evidence as a whole. The main concepts found in each individual study which were relevant to our review question were drawn together to inform understanding of overarching themes, with subthemes identified within some of these main findings.

General MS population – coordination of care themes
Narrative summary of review findings

See Appendix F for full GRADE-CERQual tables.

Review finding (theme) 1: Organisation of care and individuals with a central coordination role

Organisation of care and individuals with a central coordination role was identified as an important theme across studies. Various subthemes contribute to the main finding as they feed into the idea that organisation of care is an important factor to patients and carers, with some reporting how they would like care to be improved and others reporting positive aspects of someone with a central treatment coordination role, usually MS nurses. Subthemes contributing to this main finding included the perceived benefit of having care delivered by as few individuals as possible, the importance of developing a consistent and personal relationship and the ability of clinicians to respond to changing needs of the person, the role of health care professionals in supporting, educating, guiding and helping to access services, coordination and communication across levels of care, allowing people with MS and carers to maintain usual activities and relationships and promoting self-confidence and the ability to cope, as well as the importance of the patient or carer knowing who to contact. These are discussed in more detail below under separate headings.

Subtheme – Care delivered by fewer professionals and developing a consistent and personal relationship – eight studies

A common statement across studies was the preference for care to be delivered by as few healthcare professionals as possible. Reasons for this were most commonly the fact that people felt it frustrating to have to repeat themselves to multiple different professionals and it was also difficult to juggle multiple appointments with different individuals. The frustration of repeating oneself was mentioned in terms of repeating the situation to different types of clinician and also in the context of being assigned a new clinician when the previous one leaves. The latter is unavoidable in terms of organising care but further contributes to the finding that people prefer to be in contact with the same individuals and want to avoid repeating themselves as much as possible, meaning care delivered by as few professionals as possible is ideal. Consistent professional relationships were also reported to increase trust and reassurance among people with MS, meaning they felt able to talk more freely and openly. One study where people had access to a neurological nurse specialist reported the importance of these individuals in reducing the number of professionals required to deliver care and also the number of appointments they needed to attend based on the specialist advice they could provide themselves. Multiple studies where people had access to a neurological or MS nurse specialist or contact with a single professional valued this and reported reassurance, trust and the ability to discuss their condition freely.

Explanation of quality assessment: There was a judgement of moderate confidence in this finding due to concerns about methodological limitations and possibly relevance, but the fairly large number of studies identified contributing to this theme meant moderate confidence was thought to be appropriate.

Subtheme – Knowing who to contact – fifteen studies (from sixteen papers)

The need for people with MS and their carers to have a known point of contact was evident across multiple studies. Evidence for this comes directly from some studies reporting positive experiences of having a single point of contact and also indirectly from others where frustration and confusion about having to facilitate communication between services and not knowing which professional is responsible for specific symptoms of MS was reported. Positive experiences of neurological nurse specialists or MS nurse specialists were described, which included how their role as a point of contact and source of support was reassuring - just the knowledge that they had access to them via email or telephone if needed provided reassurance, even if they never needed to use the service. Others found it easier and quicker to contact the nurse rather than other professionals and also did not want to waste the time of other professionals. Having a well-defined support network of professionals and knowing who to contact was felt to have improved experiences of care and confidence in accessing services for some and the role of a single point of contact in advising and organising appointments and treatment sessions was clear across multiple studies. However, one study where MS nurses were available indicated that there may still be issues for some in terms of accessing relevant information, as they reported that in many cases information was obtained by chance rather than through professionals, though it was unclear whether they had actively asked a point of contact about any of the areas they felt information was lacking on.

Other studies where there did not appear to be a single point of contact available or where this was unclear also highlighted the potential need for a single point of contact. A lack of clarity about who was responsible for specific symptoms suggested uncertainty about who the person should contact and there was a desire for increased coordination of care and a single point of contact to help guide people with MS to the correct services. It was also highlighted that determining how and when to seek care appropriate for their health concern required work and knowledge on the part of people. Some people from one study stated that the choice of service often depended on ease of access, meaning they defaulted to services that were easiest to access such as emergency departments or walk-in clinics. Some people specifically expressed a need for a point of contact that could be accessed 24 hours a day, while others indirectly suggested this need as they described limited opportunity to discuss issues with neurologists due to limited time and number of appointments, something which a point of contact in between these appointments may improve.

Often, the reason for wanting or appreciating a point of contact in between appointments was due to the limited number of appointments with neurologists each year and also limited time within these appointments to discuss all concerns. Some were also concerned about wasting the time of other professionals and a point of contact to discuss concerns with initially may alleviate these concerns. As previously mentioned, another key reason for wanting a point of contact was to navigate services and make sure they were referred to the correct service as and when needed, as it was sometimes unclear who was responsible for which symptoms.

Explanation of quality assessment: There was a judgement of moderate confidence in this finding due to concerns about methodological limitations and possibly relevance, but the fairly large number of studies identified contributing to this theme meant moderate confidence was thought to be appropriate.

Subtheme – Roles of those with a central coordination role

Experiences of those that had access to someone with a coordination role, which was a neurology or MS nurse in most cases, highlighted the roles and benefits of these individuals for people with MS and are explained separately below under five different themes. In addition to studies where there was experience of someone involved in coordination, others where this may not have been the case and where issues with any of the themes occurred are also included as someone involved in coordination of care may have improved the experiences of these people with MS and their carers.

Subtheme within ‘Roles of those with a central coordination role’ subtheme – Supporting, educating, guiding and accessing services – twenty-one studies

Responses from people that had experience of a neurology or MS nurse involved in their care indicated that these professionals had a large and important role in providing support, educating people with MS, as well as their family and carers. They also in helped people to navigate and access services. People highlighted the importance of advice about disease management such as medication regimes and ways of managing their condition and identifying exacerbations. This allowed proactive care and for issues to be dealt with before they became major issues. People also highlighted that they were key in providing additional types of information and support, such as advice about planning for the future in terms of barriers at work, education, social and leisure activities, and being put in touch with voluntary organisations which allowed access to further information and the opportunity to join peer support groups. Some people also sought emotional support primarily through MS nurses, although others felt that the emotional and mental health side of MS was neglected by services in general and was not addressed enough by MS nurses. One study based in Iran suggested that nurses did not provide sufficient information across different elements of the condition (for example diet), but it was unclear whether this was referring to general nurses or MS nurses and unclear if their role included coordination of care. However, these described limitations in terms of information and support in some studies still highlight how someone with a coordination role may help to improve these experiences by putting people in touch with the correct services or organisations.

People often commented that support from neurology or MS nurses was ‘invaluable’ and they were often considered to be the first port of call when support or advice was needed. The flexible way in which they provided support, by being just a telephone call away, allowed people fears to be allayed. In addition, fears could be addressed as and when they arose, highlighting the importance of having a point of contact that is accessible as soon as possible.

GPs were also highlighted by some as being important sources of support due to them being closer in terms of geography to people and relatively easy to access. One study demonstrated that people saw neurologists as well placed to accompany patients through progression of their disease and as an important source of information, education, support and reassurance. Examples include information about research and emerging treatments and the availability of aids to improve quality of life, as well as psychological support and reassurance about their condition. Positive descriptions of healthcare professionals included those who took responsibility for the responsiveness of care and continued contact with a single professional was valued. It was reassuring as they knew they would be able to access services if they knew there was someone to contact that could help them navigate services.

For groups of people where it was unclear if there was access to an MS nurse or another professional coordinating care, a lack of knowledge around the current healthcare service and the ability to navigate these services effectively was highlighted. Some people expressed the sense of having to fight for services, aids and benefits and a lack of information about what was available to them in terms of care and other elements of life such as financial support. Navigating the systems was described as exhausting by some people, with some choosing to use services that were most easily accessible to them such as emergency departments and walk-in clinics as other services were difficult to gain access to. Some people specifically wanted the provision of or increased access to an MS nurse. In the context of bladder symptoms, this meant that people with MS were self-managing without advice from professionals as they did not know who to talk to about this symptom. Having someone with a coordination role could benefit these people with MS by advising them where possible and helping them to access the right services for their symptoms, though it was unclear whether they already had someone in a coordination role already. Others highlighted the limited time available to discuss issues at appointments with those treating them, suggesting a point of contact in between appointments for support and advice would be an improvement for these people.

Explanation of quality assessment: There was a judgement of moderate confidence in this finding due to concerns about methodological limitations and possibly relevance. However, the fairly large number of studies identified contributing to this theme meant moderate confidence was thought to be appropriate.

Subtheme within ‘Roles of those with a central coordination role’ subtheme – Coordinating and aiding communication across care – thirteen studies (from fourteen papers)

For those that had access to a neurology or MS nurse, coordination of services and facilitating and improving communication between different levels of care was described as one of their roles by many people. Compared to other services from which people were discharged once an issue was resolved, neurology nurse specialists kept people with MS on their lists permanently, which allowed support to be ongoing and meant that interruptions in long-term care could be picked up and other professionals kept informed about changes in health of each person with MS in their role as a coordinator. Their knowledge in forward-planning allowed them to coordinate care and meant that the most appropriate professionals were involved in a person’s care at any one time. Their role in coordinating services and information reduced the need for people to have to repeat themselves to different professionals, which was highlighted as a frustration for many. These roles helped to bridge the gap between primary and secondary care for some people and resolve problems with communication and coordination across services. Many felt that without this support it would have been difficult to navigate services and facilitate communication.

For those where they did not appear to have access to an MS nurse or another professional coordinating care, a desire for increased coordination of their healthcare was common. Frustration at the compartmentalisation of departments and having to facilitate communication between services themselves was expressed. The lack of communication and coordination sometimes meant that issues raised in one service were not resolved. Some people also felt that when specific problems arose, there should be an easier referral to different specialists. Issues with being given conflicting information or treatments from different providers were also described by some, also caused by poor communication. One carer that initially struggled to coordinate care themselves expressed relief when they were provided with help with this by a social worker and others described healthcare professionals that took responsibility for the responsiveness of care positively. Some commented that compartmentalisation was still an issue even when they had access to MS nurses, suggesting that they may not always have a role in coordinating care currently. However, this still highlights how improved coordination and communication between services through a care coordinator, regardless of who this is provided by, may improve patient experience.

Explanation of quality assessment: There was a judgement of moderate confidence in this finding due to concerns about methodological limitations and possibly relevance, but the fairly large number of studies identified contributing to this theme meant moderate confidence was thought to be appropriate.

Subtheme within ‘Roles of those with a central coordination role’ subtheme – Responding to changing needs – five studies

Respondents that had access to an MS or neurological nurse described how the long-term relationship they established and the flexibility in which they were able to provide services, information and support was valuable in terms of responding to the changing needs of people with MS which, as a long-term condition, often involved changing needs for example when experiencing relapses or new issues emerging. People reported that the long-term relationship and increased time for nurses to listen to them compared to other professionals, as well as their increased expertise in the condition, allowed them to understand the person as well as the condition and subsequently offer bespoke services and information in response to the person’s needs at that particular time-point. People valued ongoing access to services as and when they needed it and praised the flexibility in which nurses were able to provide support. This included the knowledge and support available at any time as well as the option of nurses visiting them at home rather than having to attend hospital to see them, which could be more difficult at times depending on the condition of the person. The knowledge of this flexibility in response to their needs was also reassuring for some when concerns about the future and whether they would be well enough to attend appointments arose, as they knew they would still be able to have access to services, and some also felt more comfortable discussing more sensitive issues at home with a nurse rather than in a hospital.

For those where it was unclear whether they had access to an MS nurse or another point of contact, comments were made reflecting the need for improved referral to different specialists when specific problems arose and the fact that the fast onset and severe disability caused by MS relapses meant services needed to be highly responsive to minimise distress and disability. People also expressed the need to stay “in the loop” and maintain contact with services in order to access information and emergency treatment and sometimes felt abandoned without regular follow-up, although the extent of this differed depending on the severity of MS and options for treatments. People also highlighted the importance of healthcare providers taking a patient-centred approach, which involves viewing patients as a whole and actively communicating with patients in order to deliver shared decision making between providers and patients, taking into account the person’s lived experience with MS. The patient-centred approach was described as being associated with improved functioning, participation and independence, while when this approach was not taken feelings of being invalidated and left with concerns that had not been addressed were described.

These observations highlight the importance of services and support being responsive to the changing and specific needs of each individual and their carers, which may be improved through having flexible access to a single point of contact and more coordinated care.

Explanation of quality assessment: There was a judgement of low confidence in this finding due to concerns about methodological limitations, adequacy and possibly relevance.

Subtheme within ‘Roles of those with a central coordination role’ subtheme – Promoting self-confidence and the ability to cope – three studies

Another advantage reported by people that had access to a neurological or MS nurse was that the regular review and follow-up, and the flexible way in which support could be provided, led to people feeling better supported, having some control over service use and therefore able to cope. Nurses helped people and their families to learn coping mechanisms and improve their confidence in self-managing the condition as people with MS were aware that if they did need help, they would be able to access it quickly via their nurse, giving them increased personal agency as well as choice and control.

For a group where it was unclear if a point of contact and care coordinator was available, they reported a general lack of information concerning bladder symptoms and difficulty navigating services. This lack of support could have contributed to the difficulties they also described in effectively self-managing their condition and symptoms as people with MS were unable to get sufficient advice, something which may be improved if a point of contact involved in coordination of care was available to guide them to the right resources or professional, reducing the need for them to try to cope alone without professional input.

Explanation of quality assessment: There was a judgement of low confidence in this finding due to concerns about methodological limitations, adequacy and possibly relevance.

Subtheme within ‘Roles of those with a central coordination role’ subtheme – Helping maintain usual activities and relationships – one study

Respondents from one study that had access to a neurological nurse specialist described how the flexible nature of the service helped them to maintain preferred social and personal relationships and allowed them to participate in activities that maintained or enhanced their quality of life. Examples given included assistance with taking invasive medications at home rather than travelling to the hospital multiple times to receive the treatment, which was beneficial for some in terms of working commitments and minimising disruption to family life. This highlights how someone acting as a point of contact with a role in coordinating care could help to adapt services and care to the needs of those receiving care and allow important relationships and roles to be maintained.

Explanation of quality assessment: There was a judgement of low confidence in this finding due to concerns about methodological limitations, adequacy and relevance.

Review finding (theme) 2: Knowledge of MS for those delivering care was important - thirteen studies (from fourteen papers)

For those with access to a neurological or MS nurse specialist, their expertise and increased knowledge of MS was valued and considered reassuring when asking for information and support. In addition to providing reassurance, nurse expertise meant that they could provide advice about medication and management and be proactive in terms of providing care to avoid issues becoming major issues and in some cases reduce the requirement for interventions from other professionals. People compared MS nurses with GPs in terms of their knowledge of MS and the feeling that GPs had limited understanding of MS was common among people, sometimes leading to them feeling unsupported. The increased understanding MS nurses had of the condition meant they were considered to be a lifeline. Some considered MS nurses to have an increased understanding of their condition compared to multiple other professionals, including GPs, neurologists, physiotherapists and occupational therapists, and preferred to contact them for that reason.

Other studies that did not specifically report on direct experiences of MS nurses also highlighted the importance of having access to a point of contact with increased knowledge of MS, as many people commented on the perceived lack of knowledge GPs had about MS, the services and support available and the skills involved in its management. Although many expressed an understanding that as general practitioners, they would not have in-depth knowledge and appreciated the support they did receive, they still wanted support from someone that did have an increased understanding as this could lead to a feeling of being poorly understood and isolated. People described experiences of feeling invalidated or dismissed by providers, noting the provider’s knowledge of MS. For example, issues would be immediately ascribed to MS without consideration of other possibilities or MS not considered as a contributing factor for a certain health concern. Some expressed a wish to have increased access to or provision of an MS nurse specifically, while others stated that they preferred care from an MS specialist or neurologist but due to permeability barriers they were often reliant on general practitioners. Some also found occupational therapists, physiotherapists and community nurses to be quite knowledgeable. It was also noted by some that though specialists might be very knowledgeable about the condition, they sometimes lacked the ‘lived’ experience of MS.

Explanation of quality assessment: There was a judgement of moderate confidence in this finding due to concerns about methodological limitations.

Figure 1. Main review findings and details – coordination of care in general MS population.

Figure 1

Main review findings and details – coordination of care in general MS population.

1.1.10. Summary of health economic studies included in the qualitative evidence

1.1.10.1. Included studies

No health economic studies were included.

1.1.10.2. Excluded studies

No relevant health economic studies were excluded due to assessment of limited applicability or methodological limitations.

A number of studies have been identified that report on the value of the MS specialist nurse (Mynors 2012, Mynors 2015, Bowen 2016, Willmington 2017, Leary 2015, Hannan 2018, Punshon 2021, Hopper 2020)3, 13, 14, 20, 27–29, 36. None of these studies met our criteria for assessment of applicability or methodology as they were not economic evaluations and/or did not include a comparator, therefore they have not been added to the included or excluded study lists. In the absence of evidence, a summary of their findings is included in the unit cost section of this report.

See also the health economic study selection flow chart in Appendix G.

1.1.11. Unit costs

Relevant unit costs are provided below to aid consideration of cost effectiveness.

Table 10. Unit cost of health care professionals.

Table 10

Unit cost of health care professionals.

Table 11. Unit costs of health care professional visits and hospital admissions.

Table 11

Unit costs of health care professional visits and hospital admissions.

Summary of literature reporting on the value of an MS nurse
Mynors 2012

The first paper, a report by Mynors 201228, provided illustrative costs and savings associated with a new MS specialist nurse post using the MS Society cost calculator (2011 edition). This tool is an excel spread sheet which can be used to calculate the actual cost of employing a MS specialist nurse against the cost savings from avoided admissions and other attendances, based on national tariff. The total annual cost (excluding cost savings) for one MS specialist nurse post was estimated to be £63,980 (2011 UK pounds). The cost components considered in the analysis were salary, overheads, telephone, mileage, computer, shared clinic receptionist, clinic room and secretarial support (see Table 12).

The report also considered the potential cost savings in terms of saved outpatient appointments and emergency admissions associated with one MS specialist nurse post. These were illustrative figures which assumed a saving of 300 outpatient appointments and 40 emergency admissions were attributed to the creation of one MS specialist nurse post. Using the national tariff, the authors calculated the expected cost savings to commissioners. The total estimated cost saving was £54,000 for each post (see Table 13). In addition, the report calculated that to breakeven, one MS specialist nurse would need to save 199 outpatient appointments and 21 emergency admissions (see Table 14). Two case studies estimating savings associated with an MS specialist nurse were presented in the report, the figures differed from the cost analysis summarised below.

Table 12. Costs associated with a new MS specialist nurse post .

Table 12

Costs associated with a new MS specialist nurse post .

Table 13. Illustrative cash releasing savings .

Table 13

Illustrative cash releasing savings .

Table 14. Breakeven assumptions .

Table 14

Breakeven assumptions .

GEMSS 2015

GEMSS (Generating Evidence in Multiple Sclerosis Services) reported on the findings of their MS specialist nurse evaluation project (Mynors 2015, Bowen 20163, 29). The findings of GEMSS are based on the data collected during 2014/5 by 34 MS specialist nurses working across 15 services in England and Scotland.

Included in the report is a cost-consequence analysis of employing an MS specialist nurse. Of note the outcomes of people with access to an MS nurse are not compared to people without access to an MS nurse as there was no control group in GEMSS. The results of the GEMSS patient and healthcare professional surveys suggests that MS specialist nurse input for people with MS can save money elsewhere in the health system by:

  • Preventing hospital admissions and unscheduled care by undertaking early assessment and treatment of relapses, infections and other symptoms.
  • Undertaking patient education on self-management and routine preventative work, to prevent symptoms becoming problematic and complications arising.
  • Reducing the need for people with MS (pwMS) to see other, more costly professionals, such as GPs and neurologists.

These savings were estimated by asking patients what they would have done if they had not had an MS specialist nurse in the past year. More than a third of respondents said that they would have struggled on their own, with the associated risk that complications of MS would potentially not be dealt with until they were at the point of crisis, requiring unscheduled care. However, nearly half the respondents said that they would have made more use of other services: GPs, neurologists and Accident and Emergency (A&E).

Based on these results, an estimate of the cost for ambulatory care which would have been necessary, had the MS specialist nurse services not been available was presented (using conservative assumptions). They assumed that each person who said they would have seen their GP ‘more’ or gone to A&E would have done so only once during the year, and we have not made any assumption that the A&E visits would have resulted in a hospital admission.

For additional neurology appointments, only 19% of pwMS said that they would have needed to see their neurologist more if the MS specialist nurse had not been there, but the authors note that this is an underestimate. In order to comply with the NICE CG186 recommendations, the authors state that everyone with MS would need to see a neurologist once a year in the absence of an MS specialist nurse, for a comprehensive, specialist annual review. They also assumed (conservatively) that people taking oral or self-injected DMDs would need two neurologist appointments in a year, and those on IV DMDs would need four. When compared to current neurologist contact measured by the GEMSS patient survey (an average of 0.74 consultations with a neurologist per year per pwMS), they calculate that, without an MS nurse, each person on the caseload on average would need an additional 0.68 neurologist consultations each year.

The authors note that even on this very conservative basis, applying these results across a ‘sustainable’ caseload of 358 pwMS, each whole time equivalent (WTE) nurse would have saved the NHS £53.6K in these ambulatory care costs, as shown in Table 15. Across the average caseload per WTE of the participating GEMSS nurses, which is 511 pwMS per WTE nurse, the saving per WTE nurse rises to £77.4K.

Table 15. Conservative modelling of outpatient health service costs saved by MS specialist nurse services.

Table 15

Conservative modelling of outpatient health service costs saved by MS specialist nurse services.

The GEMSS patient survey also asked pwMS whether they were admitted to hospital in the past year and whether they thought it was related to their MS. The study found that the number of hospital admissions in this cohort seemed low (9.5%) compared to Public Health England data (17%). The authors noted that one explanation could be that those who have been admitted are less likely to have responded to the survey due to ill health (or ongoing hospitalisation), but another possible explanation is the preventative work carried out by MS specialist nurses and other members of the multidisciplinary team. The GEMSS MS specialist nurses recorded the number of times they responded to pwMS contacting their services about an acute deterioration of their symptoms, including suspected relapses, infections, bladder and bowel symptoms and crises relating to their home situation. These amounted to an average of 157 such contacts per WTE MS specialist nurse during the year. The authors note that if only a relatively small share of such interventions result in a prevented admission (estimated cost of an emergency admission £1,820), the savings are considerable.

Finally, the authors highlight that there are wider societal benefits of MS specialist nurse services. The GEMSS patient survey reported that 5.9% of respondents said that the MS specialist nurse service had helped them stay in employment.

Leary 201520 is a retrospective service evaluation of an established UK MS nursing service. The case study reports on 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. The proactive management included the appointment of an extra 6 MS specialist nurse hours per week and the reallocation of some administrative work to allow more time to be spent on proactive as opposed to reactive case management and a rapid response service to emergency physical and psychosocial issues. 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 centre. Reduction in utilisation was from a mean of 2,700 bed-days per year (2002–2006) to a mean of 198 bed-days per year (2007–2013).

Willmington Healthcare and the MS trust 201727 published analyses of English Hospital Episode Statistics (HES) from 2015/16, showing there were 26,679 emergency hospital admissions for people with MS in England compared to 23,665 in 2013/14, and this cost the NHS a total of £46m. The report found that nearly one in five of the 89,030 people living with MS in England were admitted to hospital as an emergency in 2015/16. The average cost per admission was £1,733 and the average length of stay was 8.2 days.

The authors note the most common reasons for emergency MS admissions are often preventable with proactive care: infections (urinary tract and respiratory), bowel problems including constipation, and MS itself (including MS relapse). The report found that urinary tract infections accounted for 14 percent of emergency admissions for MS in 2015/16 and they cost £2,639 per patient. In addition, emergency admissions in people with MS for respiratory issues cost the NHS a total of £5.4m and for bladder and bowel related issues a total of £10.4m (£2,512 per admission).

A business case by Hopper 202014 reports survey results around the variability of MS nurse service provision in Hampshire for people with MS. The survey found trends suggesting that patients with the lowest engagement with an MS specialist nurse had the highest percentage attendance at GP, district nurse and NHS walk-ins. Similarly, these patients were more likely to have hospital admissions. The author clarifies that the survey does not prove that an MS specialist nurse would affect admissions to NHS facilities, but the data presented shows that there may be an association between the MS specialist nurse system and admissions to NHS facilities.

Hannan 201813 is a report of the 2018 MS Trust Nurse Mapping Survey. It provides a summary of the current provision of MS specialist nurses in the UK. The survey found that the number of whole time equivalent (WTE) MS specialist nurses in the UK has increased from 241.2 in 2016 to 250.32 in 2018. This gives an average of one nurse per 379 people with MS. The MS trust suggests that a sustainable caseload for one MS nurse is 315. The authors therefore conclude that the increase in MS specialist nurses has not been rapid enough to counteract the lower sustainable caseload figure and increase in the number of people with MS. They suggested that an additional 61 and 105 new MS specialist nurses (depending on which MS prevalence figure is used) are required to ensure the caseload is sustainable for MS specialist nurses.

Punshon 202136 is an MS trust funded study to look into the sustainable caseload for an MS nurse. In this study they suggest a new sustainable caseload of 315 per whole time equivalent MS specialist nurse. This is reduced from the current caseload of 358. The authors report factors such as travel time, complexity of caseload, changing drug therapies and societal issues such as the benefits system contributed to driving demand/workload.

Finally, in the clinical review, one paper10 reported quality of life differences between groups with an MS nurse compared to groups without an MS nurse. Quality of life and function at 24 months were generally poorer in the MS nurse groups than the groups without an MS nurse after adjustment for baseline values. Furthermore, there was no significant reduction in the hospital admission rate in the past 12 months in the groups with MS nurses relative to the groups without MS nurses. This contradicts the findings from the papers above. Together, the decreased quality of life and lack of reduction in hospital admissions would indicate that an MS nurse would not be cost-effective.

1.1.12. Evidence statements

Effectiveness/Qualitative

One non-randomised study (n=753) reported on statistical significance only with no other data provided. Results showed that there is a statistically significant increase in the availability of a contact person when an MS nurse was introduced. The only significant finding in relation to MS complications was a reduction in the incidence of pressure ulcers in the intervention sites. The evidence was rated as low quality.

One non-randomised study (n=173) reported on the proportion of patients accessing health care professionals showing an increase in the MS nurse group for a rehabilitation therapist, a nurse specialist and physical therapist. Statistical significance was reported only for quality of life and showed a difference in favour of the intervention group for energy and vitality. The evidence was rated as ‘Very Low’ quality.

For qualitative evidence on coordination of care themes, all evidence is summarised in GRADE-CERQual tables in Appendix F

Economic
  • No relevant economic evaluations were identified.

1.1.13. The committee’s discussion and interpretation of the evidence

The committee discussed the evidence for this review alongside the findings from the review on information and support for patients (Evidence review A) and this is noted where relevant.

The focus of the question has changed since the last guideline from the effectiveness of general processes of care such as regular review and centralised or electronic records to the effectiveness of the role of a health care professional (HCP) who is central to the process. This role includes the provision of advice and support to manage symptoms and relapses, care planning and directing to appropriate services. Although this role may be carried out by an MS nurse specialist, at scope consultation stakeholders noted that this role is also being carried out by other health care professionals such as physiotherapists and occupational therapists.

1.1.13.1. The outcomes that matter most

The committee acknowledged that co-ordination of care by a specific healthcare professional is difficult to measure. Studies on multidisciplinary teams (MDTs) are usually designed to examine overall changes as a result of implementing a team rather than the effects of specific roles within those teams. Therefore, the impact of particular roles within MDTs may be lost within the multiple interactions occurring during the course of provision of care. The committee agreed that in principle, having a single point of contact within an MDT should help reduce healthcare needs such as hospital admissions, additional GP or consultant appointments and improve quality of life. Therefore, the following outcomes were prioritised for this review: reduction or prevention of unplanned hospital admissions, reduction in consultant or GP appointments, treatment adherence, relapse rates, improvement in mental health, patient or carer satisfaction, functional scales that quantify level of disability, Health-related Quality of Life and impact on patients and carers. These outcomes were considered to be of equal importance the committees decision-making.

Due to the inherent difficulties in conducting research in this field and the sparsity of published studies, the committee wished to consider a wider variety of evidence to inform their decision making. A call for evidence was conducted to seek further evidence from stakeholders including non-randomised trials, reports, audits and surveys. In addition, the committee agreed that the patient perspective was particularly important to consider in this review question and wished to seek evidence on patient experience and perceptions of coordination of care by conducting a qualitative review on co-ordination of care in the general MS population. This qualitative review was a sub-question in a review on information and support needs (the remainder of the review is presented in evidence review A).

1.1.13.2. The quality of the evidence
Review of the clinical effectiveness

A literature search was conducted to look for randomised and non-randomised comparative studies on processes of care which include a single point of contact compared to processes of care where there is no single point of contact. No new studies that had been published since the last MS guideline were identified. A call for evidence did not identify any additional studies that had not already been identified or had already been considered for inclusion in the review.

Two non-randomised studies were included, with all outcomes being assessed as very low quality. One compared standard clinical service at 4 MS centres, each involving an MS nurse, to standard clinical service at 2 centres not involving an MS specialist nurse; and the other study compared a multidisciplinary MS care protocol to ‘traditional’ care. Both of these were already included in the previous guideline. Both studies were rated as very low quality primarily due to the lack of adjustment for differences in potential confounders.

The committee noted the difficulties of assessing the implementation of a MS nurse on outcomes including resource utilisation. For example, the role often changes throughout the trial duration, is multifaceted and is not uniform across services. Furthermore, interventions – in order to be successful – may need to include changes to clinician behaviour, changes to how practices are organised, enhanced information systems and providing education and support to people with MS and their carers.

Qualitative review of relating to the information and support needs of people with MS to the coordination of care

A total of twenty-six qualitative studies (from twenty-seven papers) were included in the review that covered coordination of care-related themes in the general MS population. The majority (seventeen studies) were interview-based, three were focus group-based, two (from three papers) involved a mixture of interviews and focus groups and four involved qualitative components of a questionnaire. In terms of setting, fourteen studies were UK-based, with the others being set in Canada (five studies), USA (four studies), Ireland (one study), Spain (one study) and Iran (one study).

General MS population – themes related to coordination of care only

A total of twenty-six qualitative studies (from twenty-seven papers) were included in the review that covered coordination of care-related themes in the general MS population. The majority (seventeen studies) were interview-based, three were focus group-based, two (from three papers) involved a mixture of interviews and focus groups and four involved qualitative components of a questionnaire. In terms of setting, fourteen studies were UK-based, with the others being set in Canada (five studies), USA (four studies), Ireland (one study), Spain (one study) and Iran (one study).

Of the eight findings that were identified and presented, moderate confidence was present for five of the findings and low confidence for three of the findings based on GRADE CERQual, which reflects downgrading of quality by one and two increments, respectively. Concerns about methodological limitations, either minor or moderate depending on the finding, was one factor contributing to downgrading of evidence quality. Common factors contributing to methodological limitations were a lack of consideration and/or discussion of the role of the researcher and how this may have affected study design and subsequent results, no mention of whether and how results were validated and no mention of data saturation. For those where the confidence in the finding was low, this was because fewer studies reported on that finding, meaning that in addition to methodological concerns there were also concerns about adequacy and there was less confidence in the finding compared to those where there were no concerns about adequacy. For all findings, there were no concerns about coherence.

There were also some minor concerns about relevance for seven of the eight findings identified. This was because there were concerns about relevance for almost half, half or the majority of the studies contributing to the finding. The most common reason for concerns about relevance in studies was being non-UK based, as coordination of care is likely to differ across countries and may be different to the system in the UK. Additionally, one study involved a mixed population of people with different types of long-term neurological conditions, of which MS made up ∼27%, and was therefore indirectly applicable to the population the review focused on. There were concerns about a further study as although it was UK-based and aimed to assess the workload and benefits of a single MS liaison nurse, it was published in 1995 and practice and roles of MS nurses may have changed substantially since then. However, it was not thought to be appropriate to use minor concerns about relevance as a reason to downgrade findings another increment and instead confidence in the finding was primarily based on methodological limitations and adequacy, with relevance concerns considered alongside this.

1.1.13.3. Benefits and harms
Review of the clinical effectiveness

Forbes 2006 showed that the implementation of MS nurses led to an increase in the availability of a contact person compared to the comparison group. There was limited impact on MS complications. There was a small but statistically significant worsening of physical and symptoms scales of thee SF36 compared to the comparison group.

Jansen 2006 reported that more MS patients from the intervention group (involving a multidisciplinary care model facilitating cooperation among healthcare professionals, with a nurse acting as case manager and biannual assessments by a multidisciplinary team) consulted specialists than people in the comparison group (traditional care, no clear definition provided but mentions that in the Netherlands care for people with MS is usually provided by GPs or neurologists) and had more healthcare needs. There were no reported differences in judgements of continuity of care of health-related quality of life.

Qualitative review of relating to the information and support needs of people with MS to the coordination of care

Within the qualitative review, themes of care delivered by fewer professionals and developing a consistent and personal relationship; knowing who to contact; roles related to coordination of care that may improve the experience of people with MS and their carers (supporting, educating, guiding and accessing services; coordinating and aiding communication across levels of care; responding to changing needs; promoting self-confidence and the ability to cope; and helping maintain usual activities and relationships); and knowledge of MS for those delivering care were identified.

These findings about roles of those coordinating care were useful in highlighting how having a point of contact and someone coordinating care could improve the experience of people with MS and their carers. The evidence highlighted either that people with access to someone coordinating care felt these were benefits or reported issues with these areas in those where it was not clear whether someone was coordinating care. They represent possible ways in which having a point of contact involved in care coordination could improve experiences of services. The theme ‘knowing who to contact’ also highlighted the direct importance of a point of contact coordinating care. This was already covered by an existing recommendation that involved provision of a point of contact that could coordinate care and help people to access services.

Based on a further finding in the qualitative review which emphasised the importance of MS knowledge in healthcare professionals communicating with people with MS and their carers, the committee amended the existing recommendation to emphasise that the point of contact should have access to appropriate healthcare professionals, such as an MS nurse.

Because the available clinical and health economic evidence was limited, the committee were not able to specify that the point of contact should have knowledge of MS as this may represent a change in practice and a resource impact. Instead, a point of contact with knowledge of MS services, which would include the point of contact having access to appropriate healthcare professionals, was included as this also covers systems where the point of contact may not currently have knowledge of MS but who is able to get the relevant healthcare professional to contact the person with MS in order to respond to concerns. The committee noted that although MS nurses are a point of contact for many people with MS, there is still variation in practice and specifying this role in a recommendation would have a resource impact. The committee made a research recommendation for comparative studies to be conducted looking at patient and carer outcomes as well as resource utilisation (see Appendix K). In addition to the limited clinical and health economic evidence, there were also concerns that specifying that the point of contact should be an MS nurse or another professional with MS knowledge could mean that they would be inundated with requests for basic information such as date of next appointments if all queries were to go through them which would have a negative effect on their ability to complete other tasks and see patients.

The remaining finding, which there was moderate confidence in, was care being delivered by fewer professionals and developing consistent and personal relationships. This issue is not specifically covered by a recommendation under coordination of care but the statement that professionals who can best meet the needs of the person with MS should be involved and the fact that care should be coordinated suggests that the most appropriate professionals should be involved in the person’s care at any single time-point. Many of the comments about developing consistent relationships from the evidence were related to specific healthcare professionals leaving and being replaced by new professionals, which is something that could not be addressed by a recommendation. The patient experience guideline contains recommendations on continuity of care and relationships in terms of assessing the need for this on an individual level and how this will be achieved and a reference to this guideline was made.

Overall

Taking into account the limited evidence and the low quality of the evidence of the quantitative review the committee were unable to recommend a specific model for how care should be coordinated but emphasised how important it is for people with MS and their carers. A comprehensive model of care involves many health professionals from the community and hospital and from health and social care. The committee acknowledged that different health professionals are able to coordinate care and highlighted that in a number of different services this is provided by MS nurses.

The committee considered that it was not appropriate both on the current evidence base and on their knowledge of differing service organisation, to recommend one model for coordination of care. They did consider that due to the complexity and low prevalence of MS, every person with the disease should be able to access healthcare professionals who are knowledgeable. The committee did not think there was evidence that first point of contact and professional with responsibility for co-ordination had to be carried out by a specified health professional.

The committee considered that while it might be possible to define a core multi-disciplinary team of people who are involved in patient care for example, a neurologist, MS nurse, physiotherapist, occupational therapist and neuropharmacist/specialist MS pharmacist (new addition to the recommendation), individual patients might have more need of management from other health care professionals and edited the existing recommendation. A multidisciplinary team approach should encompass all these perspectives as well as those of patient and family. They noted that the MDT may be supported by administrative support for example a pathway coordinator.

The committee made a research recommendation emphasising the importance of conducting comparative intervention studies so that the benefits and resource savings of a service to coordinate care can be evaluated.

1.1.13.4. Cost effectiveness and resource use

No relevant health economic evaluation studies comparing interventions to improve coordination of care were included in the evidence review. Several studies were identified that reported on the value of the MS specialist nurse, however, none of these studies met the criteria for assessment of applicability or methodology as they were not economic evaluations and/or did not include a comparator, therefore they have not been added to the included or excluded study lists. Instead, a summary of their findings was presented to the committee to aid consideration of cost-effectiveness.

The first analysis (Mynors, 2012) was a report for the MS Trust which produced illustrative figures suggesting that a new MS nurse post could yield a saving to commissioners of £54,000 if they could save 300 outpatient appointments and 40 emergency admissions. This was done using the MS Society cost calculator. The committee were informed that it would be challenging to update these calculations using current unit costs as the MS Society cost calculator is no longer published and it is unclear which Health Resource Group (HRG) codes were used to estimate neurology and other emergency admissions. The GEMSS (Generating Evidence in Multiple Sclerosis Services) 2015 report included a cost-consequence analysis of employing an MS specialist nurse. This was done using the results from the GEMSS patient and healthcare professional surveys, which asked patients what they would have done if they had not had an MS nurse in the past year. The report estimated that when the survey results, alongside a number of conservative assumptions, were applied across a ‘sustainable’ caseload of 358 people with MS, each whole time equivalent (WTE) nurse would have saved the NHS £53.6K in ambulatory care costs. Leary (2015) was a retrospective service evaluation of an established UK MS nursing service and although it did not adequately address the clinical question for this review, it did report that moving from reactive to proactive MS specialist nurse-led management resulted in a reduction in health care resource utilisation from a mean of 2,700 bed-days per year (2002–2006) to a mean of 198 bed-days per year (2007–2013). Similarly, a report from Willmington Healthcare and the MS trust (2017) did not directly address the review question but rather suggested where savings could be made if MS nurses, or other HCP provided proactive care. The authors noted that the most common reasons for emergency MS admissions are often preventable with proactive care, as the report found that UTIs accounted for 14% of emergency admissions for MS from 2015 to 2016 at a typical cost of £2,639 per patient.

Survey data by Hopper (2020) showed a potential association between the MS specialist nurse system and admissions to NHS facilities, as the results reported trends suggesting that patients with the lowest engagement with an MS specialist nurse had the highest percentage of attendance at GP, district nurse and NHS walk-ins, and that these patients are more likely to have hospital admissions. A couple of papers specifically reported on the caseloads of MS nurses in the UK. Hannan (2018) reported results from the MS Trust nurse mapping survey and found an average of one WTE MS nurse per 379 people with MS in the UK. The MS trust suggests that a sustainable caseload for one MS nurse is 315. The authors concluded that the increase in MS specialist nurses has not been rapid enough to counteract the lower sustainable caseload figure and increase in the number of people with MS. Likewise, Punshon (2021) found that the current recommended UK caseload of 358 people with MS per full-time equivalent appears to be too high, with a considerable amount of work left undone. The authors reported factors such as travel time, complexity of caseload, changing drug therapies and societal issues such as the benefits system contributed to driving demand and workload. Finally, in the clinical review, one paper (Forbes, 2006) reported decreased quality of life and function at 24 months, as well as a lack of reduction in hospital admissions in the past 12 months in groups with an MS nurse groups compared to groups without an MS nurse, after adjustment for baseline values. This contradicts the findings from the papers above and would indicate that an MS nurse would not be cost-effective.

Unit cost tables were also presented to the committee. The tables included the costs associated with staff providing coordination of care to people with MS, according to the studies previously mentioned, as well as the cost of professional visits and hospital admissions. Due to lack the clinical data it was not possible to undertake any further health economic analyses. Based on their clinical experience, the committee suggested that MS nurses may realise some of the savings suggested in the reports summarised above, but they acknowledged that none of these reports provide robust economic evidence upon which to base a recommendation. Therefore, taking into consideration the limitations of current clinical and health economic evidence the committee agreed that little change could be made from the previous guideline. As noted in the ‘benefits and harms’ section, based on the qualitative review, the committee amended the existing recommendation to emphasise that the point of contact should have access to appropriate healthcare professionals. There was insufficient evidence to enable the committee to name any specific healthcare professionals as the first point of contact or co-ordinators. They did specify however that the point of contact should have knowledge of MS services. The amendment of this recommendation should not result in a large change in practice and therefore will not have a significant resource impact. The committee also expanded on which healthcare professionals may be included in the multidisciplinary team. This was based on committee experience and opinion. Finally, the committee made a research recommendation emphasising the importance of conducting comparative intervention studies so that the benefits and resource savings of a service to coordinate care can be evaluated.

1.1.14. Recommendations supported by this evidence review

This evidence review supports recommendations 1.3.1 to 1.3.2 and the research recommendation on coordination of care.

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Appendices

Appendix A. Review protocols

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Appendix B. Literature search strategies

This literature search strategy was used for the following review:

  • The clinical and cost effectiveness of processes of care, including the role of MS specialist nurses and other healthcare professionals, to improve care coordination and health outcomes in adults with MS

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual.30

For more information, please see the Methodology review published as part of the accompanying documents for this guideline.

B.1. Clinical search literature search strategy (PDF, 316K)

B.2. Health Economics literature search strategy (PDF, 195K)

Appendix C. Effectiveness evidence study selection

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Appendix D. Effectiveness evidence

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Appendix E. Forest plots

None.

Appendix F. GRADE or GRADE-CERQual tables

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Appendix G. Economic evidence study selection

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Appendix H. Economic evidence tables

None.

Appendix I. Health economic model

No original economic modelling undertaken.

Appendix J. Excluded studies

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Appendix K. Research recommendations – full details

K.1. Research recommendation

What is the clinical and cost effectiveness of processes of care, including the role of MS specialist nurses and other healthcare professionals, to improve care coordination and health outcomes in adults with MS?

K.1.1. Why this is important

People with MS face a variety of symptoms and disabilities that arise unpredictably and change over time. Their physical, emotional and social needs may therefore require action from more than one health professional at any time and it’s important that these interventions are timely and co-ordinated.

A variety of models have developed to address this need, but it’s recognised some people with MS still find it difficult to access treatment, advice and support from the right people when they need it most.

The importance of adequately co-ordinated, appropriate and comprehensive care is widely acknowledged and is a function for many people with MS undertaken by a MS Specialist Nurse or other health care professional, but research is still needed on the processes or roles that would deliver this most effectively.

K.1.2. Rationale for research recommendation

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K.1.3. Modified PICO table

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