Practice Points
- Of 1417 participants of the Australian MS Longitudinal Study, 31.5% indicated they did not have access to multiple sclerosis (MS) nurse care, and on average, they exhibited worse health outcomes compared to those who had access.
- Those without access were older, had been diagnosed with MS for longer, were more likely to be male, less educated, and live in more remote areas.
- Those with access but not receiving care were similar but had lower levels of disability and were less likely to use a disease-modifying therapy.
- Clinicians should help people with MS access MS nurse care, taking into consideration the features of those who do not have access or are
not receiving care. - High-quality MS specialist nurse care should be expanded to reach as many people with MS as possible by expanding the MS nurse workforce by means of adequate funding and increasing the uptake by facilitating improved distribution channels of information about the advice and various types of support that MS nurses provide.
Multiple sclerosis (MS) is a chronic, progressive, inflammatory neurodegenerative disease affecting the central nervous system. Onset typically first occurs between ages 20 and 50 years; common MS symptoms include fatigue, cognitive impairment, balance and walking difficulties, pain, depression, and anxiety.1 Despite the disease being incurable, there are multiple MS treatments available to manage symptoms and disease-modifying therapies (DMTs) that alter the rate of disease progression.2 The care needs of people with MS vary among individuals and throughout the disease course. Tailored and coordinated health care to meet the needs of people with MS, including timely and long-term support, is important for their health management and quality of life.
In Australia, MS specialist nurses (MSSNs) are an integral part of the multidisciplinary team of specialist health care professionals. They tailor education and advice, guide symptom and relapse management, encourage self-management strategies, and assist with the initiation, safety, and efficacy monitoring of treatments.3-5 When a patient’s need is urgent, their advice and intervention can expedite clinical review and prevent an unnecessary trip to the emergency department or a hospital admission.3,6,7
Traditional funding models have changed in recent years, with a concomitant decrease in the number of MSSNs available in Australia, which leads to concerns about inequity of access.8 A survey conducted among MSSNs showed that 84% were based in metropolitan areas (population >100,000), with only 16% in rural areas (population 10,000-99,999), and none in remote areas (<10,000).8 It is important to determine whether there are gaps in access to MSSN care and whether reduced access has negative impacts on health outcomes and health-related quality of life for people with MS.
We aimed to describe the patterns of access to MSSN care for Australians with MS and the reasons that some individuals do not receive MSSN care, examine factors (geographical, personal and clinical characteristics, lifestyle behaviors, and use of DMTs) associated with access and receiving MSSN care, and evaluate the associations between access to MSSN care and health outcomes in people with MS. A companion paper to follow will describe the patterns of MSSN care provision, the reported value and effects of MSSN care, and will estimate the potential avoided costs resulting from increased access to MSSN care.
Methods
Participants and Data Collection
The data were collected as part of the Australian MS Longitudinal Study,9 a voluntary, survey-based cohort study established in 2002, allowing online and paper-survey completion. Recruitment is ongoing, carried out by MS Australia and its member organizations, including social media and individual invitations. The study cohort comprised approximately 2500 active participants with an estimated 96% diagnosed with definite MS by neurologists, according to the McDonald criteria.10 The study has been approved by the Tasmanian Health and Medical Human Research Ethics Committee (H0014183), and all participants provided informed consent.
Data used for the current study were obtained from 3 Australian MS Longitudinal Study surveys. A section of the 2020 MS Nurses and Sleep Survey was specifically designed to collect information on the use of MSSN care and was completed from February to April 2020 (2496 participants were invited, and 1722 [69.0%] responded), with 94.4% completing the survey before the first official COVID-19 Australian lockdown on March 23, 2020. The 2019 Medication and Disease Course Survey (October-December 2019) assessed DMT use and disease outcomes (2537 participants were invited, and 1767 [69.6%] responded), and the 2018 Lifestyle and Environment Survey assessed lifestyle factors and comorbidities (2678 participants were invited, and 1707 [63.7%] responded).
Survey Areas of Interest
Access to and Receiving MSSN Care
Survey respondents were asked whether they had access to an MSSN as part of their care (yes/no) and, if not, the reasons for not having access. The reply categories were: There are no MS nurses in the area where I live; There are no MS nurses in the neurologist practice that I go to; I did not know about the existence of MS nurses; and Other, please describe (free text). Those who selected either of the first 2 responses were combined as MS nurse service not available. Respondents were also asked whether they would like to have access to an MSSN as part of their care (yes/no/do not know). Based on this information, we created 3 main groups regarding MSSN care: those without access, those who have access but do not receive MSSN care, and those with access who do receive MSSN care.
MS Symptom Severity
Symptom severity in the previous 4 weeks was measured for 13 symptoms using MSSymS, a scoring system that uses single-item 0-to-10 numeric rating scores.11 Depression and anxiety were also measured using the Hospital Anxiety and Depression Scale (HADS; 14 items, total score of 0-21).12,13
Disability and Disease Progression
We used the Patient-Determined Disease Steps (PDDS) scale (scored 0-8), a validated patient-reported instrument to measure disability in MS.14,15 Self-reported disease progression over the preceding 12 months was assessed using a numerical rating scale (0-10).
Health-Related Quality of Life
Health-related quality of life was assessed using the European Quality of Life instrument with 5 dimensions (5 items, 1-5 scale, converted to a utility score, 0 [death] to 1 [perfect health]).16
Assessment of Remoteness
We used the respondents’ 2020 residential postal code to classify their geographical location into 5 remoteness categories based on the Australian Statistical Geography Standard’s Remoteness Structure.17
Disease-Modifying Therapies
Respondents reported whether they used a DMT and, if so, which type of therapy (from a list). The therapies were classified into 3 categories according to their recognized clinical efficacy.18-21 Category 1 therapies included interferon-β and glatiramer acetate; category 2 included teriflunomide and dimethyl fumarate; and category 3 (higher efficacy) included natalizumab, fingolimod, alemtuzumab, ocrelizumab, and cladribine. Therapies were also classified by route of administration: injected, infused, and oral.
Lifestyle Characteristics
Data were collected on diet quality (Diet Habits Questionnaire),22,23 physical activity level (measured using the International Physical Activity Questionnaire, converted to low, moderate, and high),24 smoking (yes/no, amount), marijuana use (yes/no, amount/frequency), vitamin D supplementation (yes/no, amount, frequency), and sun exposure (exposure per day, summer/winter).
Other Data
Other respondent information recorded included sex, date of birth, year of MS diagnosis, MS type at onset, and education level.
Statistical Analysis
The analysis included 1417 participants who responded to both the 2020 MS Nurses and Sleep Survey and the 2019 Medication and Disease Course Survey, after excluding respondents who did not answer any questions relating to MSSNs (n = 3) and those with missing postal code data (n = 12). A subsample of people who also responded to the 2018 Lifestyle and Environment Survey was used to examine differences in lifestyle behaviors (N = 1118).
Descriptive analysis was used to compare respondents without access to MSSN care with those who had access (irrespective of whether they received care) and to compare those who did and did not receive care among those with access to MSSN care; this analysis excluded 3.6% (n = 51) of respondents for whom access could not be determined.
To examine whether health outcomes differed by access to an MSSN, we used: (a) log-binomial regression for the 13 identified MS symptoms, PDDS score, and self-reported progression in the past 12 months; and (b) linear regression for the HADS and health-related quality of life scores. With these analyses, we adjusted for differences in age, length of time since MS diagnosis, MS type at onset, education level, and level of remoteness (ie, the individual lives in a city versus a rural location). Ordered logistic regression was used to examine the association between MSSN access and physical activity level. A P value of less than .05 (2-tailed) was considered statistically significant. All statistical analyses were performed using Stata/SE V.15 (StataCorp).
Results
The mean age of the sample was 58.0 years, and the mean MS duration since diagnosis was 16.7 years (Table S1; all supplemental materials are available in a PDF at the end of the online article). Overall, 46.0% had mild or no disability, and the majority were living in major cities (66.2%) or inner regional areas (25.0%).
In comparing participants included in the study (N = 1417) with those not included (N = 1079), we found that those who responded were somewhat older (58.0 years vs 56.1 years, respectively; P = .003) and had been diagnosed with MS for longer (17.5 years vs 16.7 years; P = .046), but there was no statistically significant difference in sex or education level.
Patterns of Access to and Receiving MSSN Care
Of the total study cohort, 48.9% (n = 693) reported receiving MSSN care, compared with 51.1% (n = 724) who did not. In all, 64.8% had access to MSSN care: the 48.9% who received care, and the 15.9% who had access but were not receiving care.
Of the 15.9% (N = 1417) who had access to an MSSN but were not receiving MSSN care, most indicated that they felt they did not need it. An additional 31.5% reported they lacked access to an MSSN, comprising 12.9% for whom no MSSN was available, 17.8% who did not know that MSSNs existed, and 0.8% who gave other reasons (eg, MSSN too far away, not being contacted, living in a nursing home).
Part of the 51.1% not receiving MSSN care included 13.8% who would like to receive care and 19.4% who said they did not want MSSN care, most often because they believed they did not need it. A further 17.0% responded that they did not know if they would like to receive MSSN care; among this group, 43.9% were unaware that MSSNs existed, and 27.6% reported that no MSSN was available to them (Figure S1).
Characteristics of Respondents With Access to and Receiving MSSN Care
Compared to respondents with access (regardless of whether they were receiving care), respondents without access were substantially older (60.3 years vs 56.7 years), had been diagnosed with MS for a longer period (18.2 years vs 15.9 years), and were more likely to have progressive MS (42.9% vs 24.4%) and a higher level of disability (eg, 25.8% vs 14.7%), respectively. They were also more likely to be male (23.9% vs 18.9%) and less educated (eg, 34.2% vs 42.6% with a university degree). Geographically, most respondents with access to an MSSN were located close to major city centers.However, a substantial percentage (28.4%) living in major cities did not have access to an MSSN. Conversely, more than half (51.2%) living in outer regional, remote, or very remote areas did have access.
We assessed DMT use by respondents with relapsing-remitting MS (the major users of DMTs); those without access were more likely not to be using a DMT (26.2% vs 21.2%), more likely to use an oral therapy (43.6% vs 34.7%), and less likely to use an infusion therapy (16.0% vs 27.0%) (Table 1; Figure S2).
There was little difference between the 2 groups in diet quality, amount of sun exposure, smoking, and alcohol consumption. However, those without access to MSSN care were less physically active compared with those with access (Table S2). Using ordered logistic regression analysis, even after adjusting for covariates, there was an independent effect of not having access to MSSN care on physical activity level (OR = 0.72; 95% CI, 0.52-0.99; P = .047 for every unit increase in physical activity category).
We then focused on the group with access to MSSN care, comparing respondents who received care with those who did not. Those with access to, but who did not receive MSSN care, were older (60.5 years vs 55.5 years) and had been diagnosed with MS for longer (18.7 vs 15.0 years). They were also more likely to be male (22.1% vs 17.9%), less educated (eg, 37.1% vs 44.3% with a university degree), and less likely to be living in major cities (67.7% vs 71.4%). However, the most pronounced difference was that respondents with access but who were not receiving care had substantially lower levels of disability (60.2% with no or mild disability compared with 49.1% for those receiving MSSN care). Regarding DMT use in respondents with relapsing-remitting MS, those who were not receiving MSSN care were less likely to use a DMT (39.3% vs 15.8%) and less likely to use category 3 therapies (35.7% vs 54.4%) or infusion therapies (14.3% vs 30.8%) (Table 1).
Associations Between Access to MSSN Care and Health Outcomes
Statistical analysis comparing the health outcomes of respondents without access to MSSN care with those with access (irrespective of whether they were receiving MSSN care) showed that those without access had, on average, worse health outcomes (Figure). This included the severity of all 13 identified MS symptoms, as well as higher self-reported progression over the past 12 months and higher mean disability level. The associations were only slightly altered when we adjusted for differences in age, education level, length of time since MS diagnosis, onset type, and remoteness (Table S3). The effect sizes of the mean ratios were in the range of 10% to 24%. For example, after accounting for differences in confounders, the mean PDDS score of respondents without access to MSSN care was 1.21 (95% CI, 1.10-1.33) times higher than for those with access to MSSN care.
Respondents without access to MSSN care had, on average, higher depression and anxiety levels and a lower health-related quality of life, even after adjusting for covariates (Table 2). For example, respondents without access to MSSN care had a depression score that was, on average, 0.87 units higher compared with those with access to MSSN care, and a health-related quality of life score that was, on average, 7% lower.
Discussion
For the first time, we examined the health-related impacts of access to MSSN care in Australia using survey data collected from a large Australian MS cohort. Of the survey respondents, 31.5% lacked access to MSSN care. Compared with those who had access to MSSN care, those without had consistently worse health outcomes.
Respondents who did not receive MSSN care (51.1%, regardless of whether or not they had access) said that they did not need it (19.4%), that they would like to receive it (13.8%), or that they did not know whether they needed it (17.0%). Compared with respondents who did not feel the need for an MSSN, those who would like such care were younger, diagnosed with MS for a shorter period, were more likely to be female, had a progressive disease course at onset, had a higher degree of disability, used a DMT, and lived in inner regional or outer regional Australia. Of respondents who did not know if they wanted to receive MSSN care, 44% indicated that they were unaware that MSSNs existed, while 28% said that an MSSN was not available to them. These results highlight the need to increase awareness among people with MS of the role of MSSNs and their potential to enhance health and well-being outcomes.
Compared with those with access, those without access were substantially older, less educated, had a longer disease duration and a higher level of disability, were more likely to be male, had progressive MS at onset, and lived in more remote areas. Interestingly, although remoteness was a factor, we also found that many people who lived in major cities had no access to an MSSN, while some people who lived remotely did have access, indicating that there are additional factors contributing to the lack of access. People without access to MSSN care were also less likely to use DMTs. If they did use DMTs, they were more likely to be oral and less likely to be infusion-based. Lifestyle behaviors, including diet quality, smoking, drinking alcohol, and amount of sun exposure, were similar between the 2 groups. However, physical activity levels were lower in people without access to MSSN care compared with those who had access. This effect was only partially attributable to differences in disability, indicating that MSSNs may contribute positively to the physical activity levels of those in their care.
Among the 64.8% who had access to an MSSN, 15.9% did not receive MSSN care. While this group shared many characteristics with those without access to an MSSN (older, diagnosed with MS for a longer period, more likely to be male, less educated, and live in a regional area), a marked difference was that a higher percentage of people in this group had a lower degree of disability. This indicates disability is a major reason to engage with MSSN care. For respondents with relapsing-remitting MS, those who were not receiving MSSN care were less likely to use a DMT and less likely to use high-efficacy therapies or infusion therapies.
Health outcomes were consistently worse for respondents without access to MSSN care compared with those who had access (including those who did not receive it). Specifically, they reported a higher severity of all 13 listed MS symptoms, rate of progression (self-reported) in the past 12 months, level of disability, and lower health-related quality of life. These associations persisted after adjusting for covariates. These findings suggest that MSSN care directly benefits people with MS and that those without access to this care may be disadvantaged in terms of health outcomes.
The results of our study signal the need for improved access to MSSN care, enabled by appropriate policies, practices, and increased funding. A strong case exists to ensure that every Australian with MS has access to ongoing MSSN care if they wish to receive it. This is supported by the international “Brain Health: Time Matters in MS” initiative, which also advocates for improved access to MS specialist care to reduce irreversible progression of disability in people with MS.4
Although the prevalence of MS in Australia has been increasing annually,25 the funding and availability of MSSNs have been reduced in recent years.8 This is of concern, as our study indicates that there is substantial unmet need for MSSN care, making reversal of this trend important. The focus should be on expanding the MSSN workforce with adequate funding. Where MSSN care is available, increasing awareness could help people with MS take advantage of the advice and supports MSSNs can provide. This could be facilitated by improved distribution of this information.
Since the COVID-19 lockdown period, many people have become more comfortable using telehealth services. This presents an opportunity to expand MSSN service provision in a way that is both cost-effective and not limited by geographic location. Telehealth can also increase access for other reasons, including physical challenges, such as fatigue or impaired mobility, mental health difficulties, social isolation, lack of access to transport, or the financial burden associated with attending clinic visits. For this to be a viable long-term option, a telehealth service model would need to ensure that MSSNs were adequately remunerated, including eligibility for Australian Medicare rebates. Further recommendations are made in the companion paper.
The large, demographically representative cohort of Australians with MS is one of the major strengths of our study.10 However, the study has some limitations. Some selection bias may have occurred because not all invited participants completed the surveys. We found few differences between respondents and nonrespondents. Respondents were slightly older and had been diagnosed with MS for a longer period, but neither of these factors is likely to affect our findings substantially, especially since we adjusted for both when determining differences in health outcomes according to access. Most data sets were collected over a relatively short period (October 2019 to April 2020); the health behavior data were gathered in late 2018, but yielded no major findings. For the analysis of associations between access and health outcomes, we excluded 3.6% of respondents who did not receive MSSN care because it was not clear if lack of access was the reason. This could have slightly affected the associations. Participants completed the MS Nurses and Sleep Survey in February through April 2020, coinciding with the start of the COVID-19 pandemic. Of all participants, 94.4% completed the survey before the first official Australian lockdown (March 23, 2020). Hence, COVID-19 restrictions are unlikely to have affected many of the responses to this survey.
Conclusions
Our study indicates that nearly one-third of Australians with MS do not have access to MSSN care and that these people have consistently worse health outcomes than those who do have access to such care. Use of DMTs was a major reason people sought MSSN care, and our participants did not appear to have reduced access due to geographic remoteness. Based on these findings, we recommend raising awareness of the existence and benefits of MSSN care, improving access by expanding the Australian MSSN workforce, and exploring options to subsidize access to MSSN consultations by utilizing telehealth.
