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Living With Multiple Sclerosis in New South Wales, Australia, at the Beginning of the 21st Century: Impact of Mobility Disability

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

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

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

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

From the Department of Neurology, Multiple Sclerosis Center (RvdB, KB, NT, JdB) and the Science Office (RvdB), Albert Schweitzer Hospital, Dordrecht, the Netherlands; Multiple Sclerosis Center ErasMS of the Department of Neurology (KB), Nursing Science Section of the Department of Internal Medicine (MvD), Department of Biostatistics (JvR), and Department of Epidemiology (JvR), Erasmus University Medical Center, Rotterdam, the Netherlands. 

Department of Neurology, Room F-0120, Albert Schweitzer Hospital,PO Box 444, 3300 AK, Dordrecht, the Netherlands; email: beukelaarj@asz.nl.

*JvR and JdB contributed equally to this work.

We thank MS specialist nurses Teuni Boon and Yvonne van Vuuren and neurologist Désirée Zemel, MD, PhD (Department of Neurology, Multiple Sclerosis Center, Albert Schweitzer Hospital, Dordrecht, the Netherlands), for providing MS care; MS trial nurses Celine Schippers and Suze Roodenburg-Kooij for selecting the study participants; and neurologist Peter Sillevis Smitt, MD, PhD (head of the Department of Neurology, Erasmus University Medical Center, Rotterdam, the Netherlands), for his critical review of the manuscript.

 Dr Blok is funded by Stichting BeterKeten. The other authors declare no conflicts of interest.

 This work was supported by a scientific grant from Albert Schweitzer Hospital.

 None of the funders had any role in the design and conduct of the study; in the collection, analysis, and interpretation of the data; or in preparation, review, or approval of the manuscript.

 The study design and preliminary data were presented as a poster at the 37th Congress of the European Committee for Treatment and Research in Multiple Sclerosis; October 3-15, 2021; digital.

Multiple sclerosis (MS) can cause a large variety of symptoms and is highly heterogeneous across individual patients.

 In the Netherlands, approximately 26,700 people are living with MS.

 Although exact numbers for the Netherlands are unavailable, approximately 15% of patients worldwide have the primary progressive disease course,

 and there is no reason to assume that this percentage is different in the Netherlands. The variety of symptoms and differences in disease course can make it challenging for health care providers to tailor counseling and treatment according to patients’ needs.

 Frequently, various medical specialists are involved, sometimes causing fragmented care.

In the early 1990s, MS specialist nurses (hereafter, MS nurses) were first introduced in several countries. The exact role of MS nurses may vary between countries and even between hospitals within a country, but in general, MS nurses are trained to offer medical, social, and psychological support for patients with MS and to reduce fragmented care.

 In our teaching hospital in the Netherlands, Albert Schweitzer Hospital, MS nurses are the first point of contact for patients with MS with questions about their physical and mental health. They refer patients to the appropriate health care providers in consultation with a neurologist. Multiple sclerosis nurses serve as the liaison between various health care professionals in primary and secondary care for individuals with MS.

Previous studies about the unmet health care and personal needs of patients with MS have focused mainly on those with relapsing-remitting MS (RRMS).

 However, it is likely that patients with primary progressive MS (PPMS) have needs that differ from patients with RRMS due to differences in disease course.

 Moreover, only 1 modestly effective disease-modifying therapy is currently available for patients with PPMS (ocrelizumab, available in the Netherlands since 2018) compared with several relatively effective disease-modifying therapies available for RRMS.

 In addition, fampridine can be prescribed to certain patients with MS, including certain patients with PPMS, to improve walking speed.

 Knowledge of the needs of patients with PPMS is important to be able to tailor their care. The importance of studying the PPMS subgroup was already acknowledged by Holland et al

 in 2011; the present study adds insights into the needs of this group.

Multiple sclerosis nurses are approachable, have sufficient time for extensive and frequent consultations, and usually create an environment wherein patients feel no barriers to asking personal and delicate questions.

 Insights into MS nurse consultations, therefore, provide a unique resource to investigate the needs of patients with PPMS, which can help tailor counseling and treatment. To gain insight into those needs, 3 interrelated questions were investigated: (1) What questions and issues for patients with PPMS result in MS nurse consultations? (2) Which patient-related factors make patients with PPMS more likely to consult an MS nurse? (3) What subsequent actions are performed by MS nurses to meet the patients’ needs?

This was a retrospective cohort study of all patients diagnosed with PPMS by their treating neurologist in the MS center of Albert Schweitzer Hospital, a large teaching hospital in the Netherlands. Patients were included if they visited the MS center between January 1, 2007, and January 1, 2021. Due to the retrospective character of the study and the disproportionate effort that would be needed to request explicit consent, all patients were included unless patients objected to the use of their data in general. The institutional review board of the Erasmus University Medical Center decided that this study was not subject to the Medical Research Involving Human Subjects Act.

In our MS center, standard PPMS care consists of 2 visits per year: an annual visit to the MS nurse and an annual visit to a neurologist who specializes in MS. During scheduled visits, the MS nurse uses a topic list that includes pain, spasms, and micturition and defecation issues, as well as more delicate topics such as sexuality. Clinic multidisciplinary meetings with 2 neurologists specialized in MS, 2 MS nurses, 2 rehabilitation specialists, a urologist, a neuropsychologist, a clinical psychologist, a psychologist-sexologist, a nursing home doctor, and a nursing home physiotherapist take place every 4 to 6 weeks. By indication, a gastroenterologist, an ophthalmologist, a gynecologist, and a hematologist can be present during multidisciplinary meetings. In case of defecation problems, patients are initially referred to a urologist. Patients are invited to our annual MS patient day, and a caregiver support program is offered.

Patient and disease characteristics were retrieved from patient files. Missing data on the presence of signs and symptoms were interpreted as negative. Start of follow-up was the date of diagnosis, unless it was before January 1, 2007, because MS nurses were employed by our hospital beginning January 2007. In that case, start of follow-up was defined as January 1, 2007. Follow-up ended at the last registered contact with the hospital within the study period defined previously herein.

Level of disability is expressed as the Expanded Disability Status Scale (EDSS) score (from 0 [no disability] to 10 [death due to MS]).

 The EDSS score was typically obtained at least once a year by the treating neurologist. In the case of a missing EDSS score, an expert neurologist (J.d.B.) estimated it retrospectively when possible.

The number of consultations (phone or live) with the neurologist and the MS nurse was registered, as well as whether a consultation was scheduled or patient initiated. To determine the reasons for patient-initiated consultations, patient files were searched for topics that were discussed during patient-initiated consultations and were categorized according to prespecified categories: car driving, care at home, cognition, comorbidities, daily activities (including work), fatigue, housing, medical devices, medication, micturition and defecation, mobility, mood, nutrition, pain, physical therapy/occupational therapy, progression, arm function, sleep, spasms, substance use, vision, and other. All questions by and quotes from patients that were found in the patient files were copied into our database word-for-word.

To gain insight into subsequent actions, the frequency of referrals to medical specialists or other health care providers (ie, as noted previously herein) was retrieved from the patient files.

The study population is described using medians and interquartile ranges (IQRs) for continuous variables and frequencies for categorical variables. Reasons for patient-initiated consultation (research question 1) and subsequent referrals (research question 3) are described using frequencies.

For research question 2, we determined which patient-related factors were associated with the number of patient-initiated consultations. Because the frequency of patient-initiated consultations is a count variable, an appropriate regression model for count data was used. Because the analysis indicated evidence of overdispersion (ie, the variance of the outcome was higher than the mean), a negative binomial regression model, which can handle overdispersion, was used. After consideration of the available literature, the following variables were selected as potentially relevant predictors: living with a partner (yes/no), EDSS score at diagnosis, comorbidities (yes/no), age, and sex.

First, all variables of interest were included as independent variables in univariable negative binomial regression models. A multivariable negative binomial model was constructed using a stepwise backward approach to select the most relevant independent variables. All candidate variables were added in the multivariable model and were removed 1 at a time until all remaining variables had 

 < .20 in the final model. All negative binomial regression models were adjusted for follow-up duration by including the natural logarithm of this variable as an offset (ie, an independent variable with a fixed coefficient of 1) in the model. The associations between independent variables in the negative binomial regression models and the number of patient-initiated consultations are reported as incidence rate ratios (IRR). To assess whether patient characteristics were also associated with the different reasons for patient-initiated consultation, univariable logistic regression models were run with the predictors remaining in the multivariable negative binomial regression model as independent variables, and the reasons/topics as dependent variables. These logistic regression models were adjusted for within-patient correlations due to repeated measurements using a generalized estimating equation model specification with an exchangeable working correlation matrix. Statistical analyses were performed using Stata software, release 14 (StataCorp). All statistical tests were 2-sided with a significance level of .05.

In total, 98 patients with PPMS were included. Median age at diagnosis was 50 years (IQR, 44-58 years), and 61 of the patients were women (62%) (

). During follow-up (median duration, 8.1 years; IQR, 4.4-16.3 years), these patients had a total of 720 consultations with MS nurses (median, 0 per year; IQR, 0-1 per year), of which 274 (38%) were patient initiated (median, 1 per year; IQR, 0-4 per year).

Reasons for Patient-Initiated Consultations   

Overall, patients consulted the MS nurse with a wide variety of questions (

). For approximately half of the patient-initiated consultations, patients had more than 1 reason to contact the MS nurse. The most common category was treatment (n = 101, 37%), which included any questions regarding disease-modifying treatments as well as symptomatic medications. Patients frequently asked for new treatment options and expressed their need for effective disease-modifying treatments. Patients also contacted the MS nurse with questions about treatment options mentioned in the media. Illustrative quotes and questions from patients that were extracted from the patient files are as follows: “Is there currently a running clinical trial in which I could participate?”; “I have the feeling I haven’t tried everything in my power to beat MS; what can I do?”; “During the night, I wake up because my legs are cramping, and they are itching and burning. Previous treatments gave me side effects. Is there any new treatment for this?” Patients also asked questions about fampridine: “A few weeks ago I started using fampridine. The first 2 weeks went great, yet the last weeks my walking speed is declining. Should I continue using fampridine?”

The second most common category that patients consulted the MS nurse about was micturition and defecation (n = 85, 31%), including questions regarding concerning incontinence (both urine and feces), obstipation, and urinary tract infections (Figure 1). “Last week I was at the supermarket and suddenly I lost stool. I’ve never felt so embarrassed before in my life. I don’t dare to go shopping anymore”. “I have to go to the toilet so frequently during the night, and sometimes I cannot make it on time”. “I am not feeling well; I am having cold shivers. Could it be that I have a urinary tract infection again?”

Third, patients contacted the MS nurse expressing dark feelings (n = 54, 20%). “I am so worried about the future. Who is going to take care of my kids and partner when I will not be able to do so anymore?” “I could not sleep due to stress at my new job. Therefore, I have visited the company doctor, and he advised me to report fully sick for work. That makes me so sad and I cannot stop thinking about this. Now I cannot sleep anymore due to these sad feelings.”

Impaired mobility was also a reason for patients to contact the MS nurse (n = 37, 14%), often in combination with questions regarding spasms (n = 32, 12%), pain (n = 32, 12%), or medical devices (n = 15, 5%). Other topics that were discussed varied widely (Figure 1). The category “other” (n = 46, 17%) included questions regarding life expectancy, financial s ituation, t ransportation, and sexuality. One patient wanted to discuss euthanasia during a patient-initiated visit.

Figure 1 also shows the multiple topics discussed during scheduled visits. Some topics were discussed as frequently during scheduled visits as during patient-initiated visits. Yet there was a statistically significant increase in the discussion frequency during scheduled visits for the topics mobility (

 = .003), daily activities (including work) (

 = .021), and micturition and defecation (

 = .028), probably due to the use of the topic list.

Based on the univariable negative binomial regression analyses, male sex (IRR, 2.227; 

 = .020), and living without a partner (IRR, 2.751; 

 = .013) had a significant association with more frequent consults with the MS nurse (adjusted for variation in the duration of follow-up). The variables living without a partner and sex were retained in the final multivariable model (

, available at the end of this article). Patients living without a partner consulted the MS nurse 2.340 times (95% CI, 1.057-5.178 times) more frequently than patients living with a partner, corrected for sex and variation in the duration of follow-up. Male patients consulted the MS nurse 1.890 times (95% CI, 0.925-3.861 times) more frequently than female patients, also corrected for living with a partner and variation in the duration of follow-up. There was no significant difference in topics brought up by patients with a partner vs patients without a partner. Male and female patients brought up different topics. Female patients had a significant increase in questions regarding care at home (

The third research question concerned what MS nurses did to meet the patients’ needs. In most consultations, no referral was deemed necessary. The MS nurses attended to the patients’ needs by providing information (verbally or by leaflet) and advice concerning diet, exercise, and defecation and micturition. In 22% of patient-initiated consultations (n = 59; 20% of all contacts [n = 146]), MS nurses referred a patient. The most frequent referrals after patient-initiated visits were to the neurologist (n = 18, 31%), followed by the urologist (n = 7, 12%), rehabilitation specialist (n = 7, 12%), psychologist (n = 6, 10%), physical therapist (n = 3, 5%), speech therapist (n = 3, 5%), and occupational therapist (n = 1, 2%). The remaining referrals (n = 14, 24%) were to other medical specialists and the general practitioner.

In this study, we investigated the needs of patients with PPMS using data on patient-initiated consultations with MS nurses, and we found that they consulted the MS nurse for a variety of reasons. Patients living without a partner and male patients were more likely to contact their MS nurse. In one-fifth of the patient-initiated consultations, the MS nurse consultation resulted in a referral to a specialist, most often a neurologist, a urologist, or a rehabilitation specialist.

The main reason patients contacted the MS nurse was for treatment-related questions. The present results are in line with previous results described in 2011: because there is no cure for PPMS, patients are still searching for treatments to lower symptom burden and frequently have questions about treatment options mentioned in the media.

 Because treatment is a recurrent topic in patient-initiated consultations, it is important that MS nurses are highly accessible to answer questions concerning treatment accurately and in a compassionate matter. Moreover, it seems important to repetitively provide detailed information to patients about new treatment options, not only if a treatment would be an option for a particular patient but also if it is not or not yet an option for a particular patient to manage patient expectations.

Micturition and defecation problems remain a major concern for patients with PPMS and, thus, a reason to contact the MS nurse despite the fact that MS nurses and neurologists also ask about these problems during scheduled visits. Zecca et al

 described the negative impact of micturition problems on the quality of life of patients with MS. Wang et al

 reported on the low treatment satisfaction of patients with MS and bladder, bowel, or sexual problems. The recent report by Alvino et al

 shows that moderate/severe bowel dysfunction occurred more frequently in patients with progressive MS phenotypes, higher disability, older age, and longer disease duration. The present results underline the importance of repetitively providing detailed information regarding micturition and defecation problems, on top of strictly and proactively monitoring such problems over time.

The present results indicate that male patients with PPMS and those without a partner contact the MS nurse more frequently. Previous findings by Lonergan et al

 indicated that patients with MS, but not specifically those with PPMS, without a partner perceive more unmet health care needs. Most patients with PPMS need supportive assistance at home, frequently provided by informal caregivers such as the partner.

 Informal caregivers enable people with MS to remain in their homes as their functional limitations become more permanent and their need for personal assistance increases.

 Sex differences in MS are well-known, especially concerning epidemiology, clinical aspects, and prognosis. Generally, male patients have a poorer prognosis, with a disease course that more severely restricts their mobility. Moreover, male patients with MS tend to experience lower social support than female patients with MS.

 These findings might explain our observation of more frequent patient-initiated consultations by male patients with PPMS. On the contrary, men in the general population are a smaller proportion of health care consumers than are women.

 Also, in a recent study, female patients with MS, but not specifically PPMS, had significantly higher direct medical costs than male patients with MS, due to ambulant consultations among other things.

 More research into sex-related differences in the health care needs of patients with MS is needed to further individualize care. For now, the present findings provide justification for additional visits to meet the needs of male patients with PPMS or those living without a partner.

An interpretation of the fact that only 20% of all MS nurse consultations and 22% of all patient-initiated MS nurse consultations resulted in a referral is that the MS nurses provided tailored care that met the needs of their patients. In 20% of the consultations, the care needs were not able to be immediately addressed. In those cases, MS nurses referred patients to the appropriate providers. The diversity of referrals to other specialists that we found in this study clearly emphasizes the key role that MS nurses play in guiding patients with PPMS to the appropriate care, as has been reported in other studies as well.

One interesting finding: in contrast to the findings of Holland et al,

 MS nurses did not receive questions about caregiver support in the present study. This might be explained by the fact that a caregiver support program is offered at our MS center, perhaps pointing to the need for more MS centers to consider such a program.

To our knowledge, this is the first retrospective study to specifically describe the needs of patients with PPMS by studying the topics brought up by the patients. Previously, questionnaires were frequently used in studies focusing on patient needs.

 Using questionnaires has several well-known and important advantages; potential disadvantages are the loss of relevant information and context due to closed-ended questions, receiving socially desirable responses, questionnaire fatigue, and recall bias when discussing past events.

 Furthermore, a prospective study design may have the potential disadvantage of individuals modifying their behavior in response to their awareness of being observed (ie, the Hawthorne effect)

 when told that the help-seeking behavior will be studied. A retrospective design can overcome the Hawthorne effect

 and provide insights into the actual behavior of patients. This study provides qualitative information based on quantitative data, thereby contributing more in-depth knowledge about what matters to patients with PPMS.

In conclusion, patients with PPMS consult the MS nurse with a variety of questions, emphasizing the pivotal role of MS nurses. The recurring questions about treatment options illustrate the pressing need for highly effective treatments. The present findings imply that strictly monitoring micturition and defecation problems and providing detailed information on symptomatic treatment options is of great importance to patients with PPMS. In addition, these results suggest that male patients with PPMS and those living without a partner would benefit from more frequent visits with the MS nurse.

Reasons Patients With Primary Progressive Multiple Sclerosis Contact Their Specialist Nurses

Guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, is a professor in the School of Rehabilitation Therapy at Queen’s University in Ontario, Canada. She began her career as a clinical occupational therapist and shifted to a research career focused on generating and sharing knowledge to help people affected by multiple sclerosis (MS) lead healthy, meaningful lives with control over their participation in daily activities, at home and in the community, particularly as they age.

For this special issue on caregiving in MS, she chose to interview Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. For more than 4 decades, he has investigated the psychological well-being well-being of caregivers, including coping mechanisms and innovative interventions to improve their quality of life. His work is dedicated to applying positive health frameworks to chronic illnesses and to empowering caregivers and individuals with MS.

Together, their expertise illuminates the multifaceted challenges and opportunities in MS caregiving research and understanding.

“…care implies a motivation to look after, to nurture, to love, to have compassion for. Once triggered, 

. If you care, you can do almost anything.” ~Kenneth Pakenham, PhD

 As you think back over your extensive career in caregiving research, particularly in the MS space, where are the biggest gaps in our knowledge? Where could early-career researchers focus?

 I’ve got 6 knowledge gaps I’d like to take you through. The first is that I don’t think we know very much about how MS carers operate in the broader interpersonal context of caregiving that involves the person with MS, the family members, close friends, neighbors, and health care professionals in the broader community. The critical issue here is that most of our research is focused on the caregiver, as if the carer were separate and independent of this crucial interpersonal context in which the caregiver operates. At [the] very minimum, we should be including the person with MS when we conduct research on MS carers. We know caregiving is profoundly interpersonal and that living with a loved one with a degenerative, chronic illness entails an ongoing interactive adjustment for the carer and the person with MS, yet in our psychosocial research, we focus on either the person with MS or the carer as if they were independent of the interactive dyadic processes that are occurring. For these 2 people, the person with MS and the carer, their lives are intertwined in various ways, and to ignore that crucial interactive influence is very, very limiting in terms of research, our understanding, and how we can move forward.

 Listening to you summarize and identify this gap that we’re not studying, I thought “the family unit,” but it’s often more than just the family. I think most of us would acknowledge we depend on our family, but we also depend on our friends, and some of those are closer and some of those are more distal.

 I think what you’re talking about is beyond dyadic data analysis, but I still think dyadic data analysis is really important because there is that critical element around the person with MS and their primary carer; the mutual influence here is really important. Going beyond that—to your point about understanding the broader network—this can be achieved through our social network data analytic approaches that have been developed and refined particularly over the past decade or so. I think both dyadic data analytic approaches and social network data analytic approaches will help us understand the role of carers in relation to the person with MS and other people that can assist, and this will inform interventions at the family level, the individual level, and the broader community level.

 I totally agree. I think that is such an opportunity moving forward.

 The second gap is our lack of understanding of the carer adjustment process. Our focus has been on the function of carers because they play such a critical role economically, socially, etc, in the health care system, but the carer—like the person with MS—has to navigate a process of adjusting to the person’s illness and how that affects them in the family. I don’t think we really understand a lot about that adjustment process. To some extent, I tried to get at it by investigating the meaning-making that carers go through in their attempt to accommodate this huge change to their lives: A loved one with a degenerative neurological disorder that changes over time, and they have to keep readjusting. I think that’s a gap where we could understand a lot more. I think it’s a balance: focusing on the function of carers—what they do and how important their role is—but also investigating and understanding how they adjust.

 And as part of that adjustment, how do they learn to take on those new roles or activities that they’ve never had to learn, they’ve never had to do before? Researchers have described all these functions that caregivers perform, yet we haven’t asked how they develop the skills necessary to be able to take on those additional functions.

 It is huge. But sometimes we forget the care element of the carer and caregiving. The critical word here is “care.” And care implies a motivation to look after, to nurture, to love, to have compassion for. Once triggered, it becomes the powerhouse, the engine. If you care, you can do almost anything. If you care, you’ll learn how to administer an injection. If you care, you’ll learn how to deal with incontinence. Caring is the critical element. Harnessing that positive, caring drive and related values that the person has is empowering across different care contexts— whether it’s because they’re in the family and it’s more to do with the family context of caring, or whether it’s a friend and it's more to do with the friendship context of caring, or whether you’re a neighbor and it’s more like a next-door neighbor and part of the community notion of caring for someone who is vulnerable.

Caring is the critical element. Harnessing that positive, caring drive and related values that the person has is empowering across different care contexts...

 I think that’s a really profound reminder, because we don’t think about that or write about that very much. Honestly, I can’t think of papers that have specifically addressed that in the MS caregiving literature in the way in which you’ve just talked about it.

 I learned about this through my research on young carers because young carers are not intellectually shaped by the health care and medical systems. When you care for someone, when you love someone, you don’t think of it as anything but caring.

My third knowledge gap is reward. In the review that you and your colleague published, you identified that very few papers over the [past] 29 or 30 years had examined or investigated the positive aspects of caregiving. This is really interesting because, if you think of caregiving, there are costs but there are also rewards. There’s incredible fulfillment, there’s an enhancement of meaning in life, [and] there can be an enhancement of relationship through caring.

 Definitely, and it’s often quite intangible. I’m not sure people are always able to articulate what that looks like or how that feels, but it’s so important to be able to support people to achieve those rewards fully because it keeps them engaged in caregiving.

 This is [what] keeps the engine ticking over, and it produces growth, it produces creativity, it produces clever problem-solving. It produces ingenuity, ways to get around difficult, practical things that pop up because the person has a disability.

The fourth gap is in relation to intervention and, in some ways, I’m sort of paraphrasing the findings from your review, and that’s a nice dovetailing of our knowledge. One of the deficits you identified in your review—and for me, this is really important—is the lack of intervention research on carers. To be quite frank, after working in this field for 40-odd years, I started to feel guilty that I had done all this research refining theoretical frameworks around caregiving and developing measurement instruments, and although this research is important and it contributes to science and our understanding of caregiving in MS, all the time there are carers and people with MS struggling with their loss. What am I doing for them? Although my research is producing understanding and advances in scientific knowledge, I nevertheless have a responsibility, an ethical and professional responsibility as a researcher to deliver something tangible that will make a difference to the lives of people with MS and the lives of those caring for people with MS.

I...have a responsibility, an ethical and professional responsibility as a researcher to deliver something tangible that will make a difference to the lives of people with MS and the lives of those caring for people with MS.

I think the importance of intervention research should be highlighted, so I’d like to talk about the way this might move forward. I’ve developed and published research on a resilience training intervention [REsilience and Activities for every DaY (READY) for MS] over the past 10 years. The focus has been on the person with MS in terms of the delivery of this intervention, but in delivering the group, face-to-face intervention through frontline MS support services, quite often the carer accompanied the person with MS because of disability and practicality issues. What we’ve found is that having the carer accompany the person with MS to the intervention, anecdotally, they reported greater gains because both were learning a common language about coping strategies and how to better manage the illness and the adjustment process. They had a common language and a common set of skills. Why wouldn’t you deliver the same thing to both people?

 Even [in] some of the early caregiver intervention work I did, one of the pieces of feedback we received from caregivers is that they wanted to have the person with MS in some sessions.

 And I think that culturally, this is actually more important in some cultural contexts than others. We’ve delivered and evaluated the [READY for MS] intervention in Italy, Greece, the UK, Australia, and currently it’s being translated for delivery in Germany. Anecdotally, in the Mediterranean cultures, the presence of [the] carer—which was often a family member—was seen as really important because of the close community and family ties. I think that intervention is very important and, where possible, it should include at least the dyad and even be extended to other critical people in the network.

 You talk about the cultural impact of families [and] what’s expected, and I think about my experience in North America [where] families tend to be spread out, and yet they are still providing care, often from a distance. It’s more complicated. Do you see potential for dyadic interventions supported by technology to be able to bring families together to receive these dyadic interventions, even if they’re not located in the same place?

 Yes, definitely. By way of illustration, this resilience training intervention [READY for MS] presents generic resilience building strategies. They’re applicable to any person, whether you have a chronic illness or not [and] whether you have a caregiving role or not. The material is suitable for anyone to obtain information, gain understanding, and develop [resilience] skills. In the Greek version [of the intervention], they delivered it as a group program but via real-time video conferencing. The carer wasn’t necessarily in another location, [and] sometimes they were all at the computer. Anecdotally, some of the people with MS had their carer with them and were engaging in the material [together]. I think it’s entirely feasible to use digital technology for the delivery of interventions that are suitable for carer and person with MS, even if they live separately.

 The fifth knowledge gap is around carer diversity. If you think of people with sexual diversity, gender diversity, ethnic/racial diversity, if you think of minority groups like that, they typically have difficulties in accessing with equity health services where they’re not stigmatized or discriminated against. This is a serious problem. I’m a sexually diverse person. I identify as a gay man, and I sometimes have difficulties in getting health services where I’m not discriminated against or stigmatized. This is a real problem. If the carer is trying to support a person with MS, the couple may in fact be a same-sex couple, or it might be that the person with MS is heterosexual but the carer identifies differently and, because of this relationship, the person with MS [is] possibly more likely to have difficulties in accessing health care services.

 We’re going [to] do better in this area. We have to, we have to because we can’t leave groups behind. There’s too much at stake here for people with MS [and] for families affected by MS.

 I agree. Somewhere, somehow, someone needs to voice the truth and the reality that not all people with MS are heterosexual, White, middle-class people, and not all carers have that demographic characteristic. We do have diversity.

Somewhere, somehow, someone needs to voice the truth and the reality that not all people with MS are heterosexual, White, middle-class people, and not all carers have that demographic characteristic. 

The sixth knowledge gap is around young carers. I’ve done quite a bit of work in this area. I think we know quite a bit about the tasks young carers do. A colleague and I developed a measure that’s generic to young carers, but we’ve used it in studies of offspring of parents with MS [to] identify the tasks that these young people are undertaking. Many of them are undertaking caregiving tasks that are typical of what the adults undertake, and, sometimes, the tasks that these young people are undertaking, you could question whether young people should be undertaking some of the…quite personalized health care tasks. Nevertheless, we do have a reasonable amount of knowledge about the care tasks these young people are undertaking. We also have a reasonable understanding of how these young people experience the process of caregiving in the family. We’ve identified some of the risks and protective factors that influence the child’s adjustment as they are growing up with a parent with MS and having to take on various caregiving roles in the family. And while those knowledge areas can be extended, I think we are at the point where we can start seriously looking at interventions for young carers, for example, interventions that are specifically for the young person and interventions that might be more family focused because of particular needs. A whole family approach may be necessary and appropriate in some contexts, or simply just a young carer-focused intervention.

Opportunities in Multiple Sclerosis Care Partner Research: An Interview

Complete Transcript: Opportunities in Multiple Sclerosis Care Partner Research: An Interview

Previous research has shown that users of complementary and alternative medicine (CAM) among persons with multiple sclerosis are more likely to be women and to have a higher level of education compared with nonusers. This qualitative study was performed to explore the motivations linked to CAM use among highly educated women with multiple sclerosis.

The study was based on a phenomenological approach, and 8 semistructured, in-depth qualitative interviews were performed. Data were transcribed verbatim and analyzed through meaning condensation and identification of recurring themes.

Regarding the informants’ motivations for CAM use, 3 main themes emerged: (1) Self-reliance is essential in disease management, (2) conventional health care lacks a holistic approach, and (3) personal experience is the primary guide.

The interviewees wanted approaches to health care that supported their desire to actively participate in the management of their disease. They were critical of the conventional health care system, and they emphasized the importance of letting their own personal experiences, as well as those of others, guide their decisions.

From the Danish MS Society, Valby, Denmark (CSK, LS, ML, JLS). 

 Caroline Storr Krogh, MA, Ballumgade 2, 3; 1753 Copenhagen, Denmark; email: caroline-sk91@hotmail.com.

*CSK and LS contributed equally to this work.

We thank the women interviewed for the study and the Danish MS Society.

 The authors declare no conflicts of interest.

Multiple sclerosis (MS) is an incurable, chronic autoimmune disease affecting the central nervous system and resulting in various symptoms and impairments. Medical treatment may slow disease progression or reduce symptoms, but it is not always effective and may be associated with severe adverse effects.

 To supplement conventional treatment and rehabilitation, many individuals with MS turn to complementary and alternative medicine (CAM) to relieve symptoms and strengthen the body’s ability to manage the disease.

 No precise definition of CAM exists. We follow the overall interpretation as presented by the US International Center for Complementary and Integrative Health suggesting that CAM covers health care approaches that are not typically part of conventional medical care or that may have origins outside of usual Western practice (eg, 

, reflexology, magnet therapy, cannabinoids, certain diets).

Studies among individuals with MS find CAM use at 46% to 59% in Nordic countries and as high as 82% in Germany.

 Some of the most frequently used CAM modalities among individuals with MS in Denmark are natural medicine, dietary supplements, special diets, and therapies such as acupuncture, reflexology, yoga, and meditation.

In most cases, CAM use is not associated with health risks, and recommendations can be made in the area of MS symptom management.

 However, the effects of most types of CAM are not well documented in the MS field, and CAM use may be associated with adverse effects.

 In addition, the use of natural medicines and dietary supplements in combination with conventional medicine may lead to negative interactions.

 Although many individuals with MS benefit from CAM,

 potential risks and related costs should be considered. It is generally recommended that patients discuss CAM with their conventional practitioners, but many do not.

Previous research among individuals with MS found associations between educational level, sex, and CAM use, showing a higher proportion of women and a higher level of education among CAM users compared with nonusers.

 Studies investigating perceptions of and reasons for CAM use among individuals with MS in general

 indicate that dissatisfaction with conventional treatment, a desire to play an active part in disease management, and a desire for holistic treatment are some of the main motivations. However, no previous studies have explored reasons for CAM use specifically among the typical adherents. To improve the dialogue between health care providers and individuals with MS about CAM, knowledge about the common reasons for CAM use is needed. Therefore, this qualitative study explores the motivations that may lead highly educated women with MS to use CAM.

The interviewees were recruited through the official Facebook page of the Danish MS Society, where they filled out a form to register. The inclusion criteria were being a woman, having a bachelor’s degree or higher education, having an MS diagnosis, and using a minimum of 2 CAM treatments during the past year. Of the 8 participants, 5 had bachelor’s degrees and 3 had master’s degrees. As shown in 

, the most-used CAM interventions were natural medicines and dietary supplements, special diets, and various therapeutic CAM methods (eg, acupuncture, healing, craniosacral therapy, “a holistic lifestyle”). Half of the informants also received conventional medical treatment to reduce disease progression and/or symptoms.

In Denmark, studies that do not include biological material from humans cannot be reported to the National Committee on Health Research Ethics. For this study, therefore, no approval was needed. However, the study adhered to the European Union General Data Protection Regulation and ethical principles for medical research as presented in the Declaration of Helsinki.

The study consisted of semistructured, in-depth qualitative interviews that ranged from 35 to 60 minutes. All interviews were recorded and transcribed verbatim. The interviews took a phenomenological approach. An interview guide was developed to structure the interviews, as shown in 

, but the interviewer allowed for the informants’ immediate perceptions to influence the interviews. Interview data were analyzed using a thematic analysis inspired by Attride-Stirling.

Three themes emerged from the analysis regarding motivations for CAM use: (1) self-reliance in disease management, (2) lack of a holistic approach in conventional health care, and (3) one’s own and others’ personal experiences.

Theme 1: Self-reliance Is Essential in Disease Management   

Interviewees used CAM to play an active part in the management of their MS, independent of the conventional health care system. To some extent, they ascribed their ability to navigate alternative approaches to disease management to their educational attainments.

Several interviewees said that playing an active part in their treatment and care was essential. Responsibility for one’s own health was a commonly expressed value and was often identified as a necessary step to avoid being reduced to a passive recipient of health care. Elsa, who had chosen to discontinue conventional MS treatment, said, “People should make an active decision about what they think and believe in, and not just let themselves be dictated [to] by a system. If I had done that, I would just be injecting myself in the leg…. They have just accepted that that’s how the system works and that they ‘are the disease....’ I still have the will and the courage and the energy to fight for a long, good life without medicine.”

Elsa’s opinion reflects a common attitude among the interviewees: Playing an active, decision-making part in disease management is essential to be more than just a patient with MS. Not letting oneself be passively “dictated [to] by the system” was a goal. In her quote, Elsa implies that uncritically following the conventional recommendations for treatment is equal to not fighting for a good life, and that a good life is a life without conventional medicine.

Most interviewees also indicated that taking personal responsibility for one’s life and health requires a critical appraisal of conventional medicine and doctors’ opinions. For example, Ann stated, “I’m not the type of person who goes to the doctor and believes it will help me.… I just think that I can do a lot myself.… I think that we can do other things than what is traditional.… Many people think ‘I’ll just go see my doctor and then he will know what I should do’ and then you receive a pill.” The skepticism of conventional treatment was also reflected in the fact that 4 of the informants had declined conventional medical treatment for their MS.

Several interviewees emphasized that their high educational level was an important factor when making decisions that did not necessarily follow a doctor’s advice. Academic training was an important qualification for navigating the many different approaches to treatment as well as for seeing through conventional recommendations. Denise said, “I was sure as hell not letting him [the doctor] decide that [ie, on use of CAM treatments]. He may be a doctor, but I have studied religion and sports, and I know how much I don’t know. I’m always trying to optimize.… I have used everything from my academic studies to manage well.”

A few informants linked their way of navigating treatment approaches to their ability to search for and assess information in a meaningful way. Hannah, who was a health professional, said, “There must be substance in what I read. I am well aware that I can sit as a health professional and read and interpret an article better than others [with MS].”

Theme 2: Conventional Health Care Lacks a Holistic Approach    

Generally, the interviewees found it important to view body and mind as a whole in the management of their disease. They felt that CAM offers a holistic approach to disease management, and the opposite was true of the conventional health care system. Thus, the lack of a holistic approach led to a loss of trust in conventional health care.

A few interviewees said that they had a satisfactory relationship with their conventional doctor, but most felt that their CAM practitioners provide a more holistic focus and are more present in the consultation. Betty said, “There is more presence with the alternative practitioner than with the doctor.… The doctor is more absent. They do the same tests every time. They ask standard questions.… I get a more holistic treatment [with the alternative practitioner] and take something valuable home with me.”

Part of the appeal of the holistic focus is the integration of care for the mind and the body. Betty also said, “When you take medication, then it’s all about the brain…. If the body is not brought into play, then I don’t think it’s going to work…. The 2 are interconnected more than what is recognized in the Western world…. The body also remembers our experiences and the things we go through.”

Several informants were inspired by the Eastern way of thinking about disease management, which they characterized as more holistic and often encompassing more than conventional medical treatment. Eastern medicine was viewed as ascribing higher value to what patients can do for themselves, without judgment. Denise, who had been treated in a country in Asia, said, “Here I learned about the holistic way of thinking…which consists of different compositions, mental and physical. It’s all interconnected…. The [holistic] doctor never told me what was right or wrong…. He never let me feel that I couldn’t act [like] myself. He believed that what we do for ourselves has an effect.…” Denise later explained how her conventional doctor reacted to her experience with the holistic doctor by calling her experience “mumbo jumbo,” mocking her and laughing. This resulted in Denise losing her regard for conventional doctors altogether.

Similarly, Gina had wanted to discuss whether a certain diet could be beneficial to her health, but this idea was rejected by her conventional doctors, and her impression was that non-Western cultures often have more holistic approaches to health care and would be more open to such a discussion: “I’ve lost a lot of confidence in the system…. Not a single person has been willing to talk about diet beyond what the health authorities recommend. In my experience, some doctors from other countries are more open to new ideas. With Danish doctors, I am met with resistance…. The doctors prefer to look at trials, medicine, placebo.” Doctors in the conventional Danish system were generally described as being closed-minded and unwilling to think beyond official guidelines and recommendations.

The interviewees generally thought that conventional treatment and conventional doctors overlooked their individual needs and the root causes of their symptoms by narrowly focusing on symptomatic treatment, a temporary and inadequate treatment plan. Gina recalled that instead of looking for the cause of her muscle tension she was offered a pill to relieve it: “A pill is just a temporary solution that doesn’t really address the root cause. It just becomes symptomatic treatment instead of getting to the cause of why I have muscle tension…. That kind of treatment, it’s just so microscopic, and there’s a long way [to go] for the treatment to be about me [as a person].”

Some informants related the doctors’ narrow focus on pills to financial incentives from the pharmaceutical industry. Ann said, “There is financial profit in it. Therefore, a neurologist will not consider anything besides pills…. I think because the pharmaceutical industry has such big financial interests that it limits what we are supposed to do and not do.” Hannah also articulated that financial incentives were particular to conventional health care and did not play the same role in CAM: “The whole pharmaceutical industry…it’s all about the money. It’s not the same way in the alternative treatment industry.”

There was generally a more positive attitude toward CAM practitioners earning money from treatments than conventional doctors earning money from treatments. Part of the reason for this was that participants considered CAM practitioners to be generally more invested in their patients’ treatment, giving them higher credibility.

Theme 3: Use of Personal Experiences as the Primary Guide in Decision-making About CAM 

The third theme is that the participants’ decisions regarding the use of CAM are, to a large extent, based on their own or others’ personal experiences. Scientific evidence regarding CAM was generally considered less relevant.

Several informants indicated that their knowledge of alternative forms of treatment is mostly formed by their social communities, personal networks, and, to some extent, social media. Hannah explained, “I’ve been reading in Facebook groups. Some women who have MS write a lot about alternative treatments…. I think people are good at recounting experiences.” Generally, other peoples’ experiences with CAM made an impact on their decisions regarding CAM use.

Several informants stated that their personal experiences are essential when it comes to deciding whether to continue or stop a CAM treatment. For 2 informants, the primary consideration was whether CAM increased their experience of overall well-being. Fiona said, “To me, evidence, in a way, is about well-being…. Perhaps it doesn’t cure MS at all, but just 1 improvement of my condition in some form or other…. That alternative [practitioner], she is just really nice…. You can feel that she is compassionate and feels sorry for me. She cares for me, and I let her.” Celine said, “I started with acupuncture. It made my body relax and feel good. Whether it’s just placebo I don’t know, but it helped…. Maybe it’s just [lying] down for an hour and being taken care of that has an effect…. Just an hour to myself where I am in focus.” The effects of CAM treatments were a sensory experience but also an experience of psychological well-being and care. Thus, CAM treatments were experienced as a form of self-care and as a personal health–promoting treatment.

Fiona believed that knowledge and evidence could never be truly objective, and for that reason, an individual had to rely on their own experiences: “You can seek a lot of knowledge in the places where you want to find the knowledge you are seeking…. Evidence can be fluent when it comes to [the impact of] nature and nurture and the persons that are selected. No study will ever be completely objective. It can never be 100%.… It just has to make sense, the things we do to ourselves. I think it makes sense to do things if they don’t do more harm than good.” While not articulating a strong opinion concerning evidence, the interviewees emphasized the importance of not being dictated to by the rules and characteristics of the conventional health care system.

The interviewees in the present study expressed a strong desire to be an active part of their treatment and care, which they achieved largely through CAM. They were also critical of conventional health care, which they believe places the patient in a passive role and focuses too narrowly on medical symptom management instead of holistic treatment. CAM practitioners treated the whole person and not just the symptoms. These findings are in line with previous findings about individuals with MS and CAM. Mews and Zettl

 found that dissatisfaction with conventional treatment and a desire to play an active part in disease management were the main reasons for CAM use. Similarly, Nayak et al

 found that the most common reasons for using CAM were a desire for holistic treatment and dissatisfaction with conventional health care. Loraschi et al

 also found dissatisfaction with conventional treatment to be a main reason for CAM use, and Skovgaard et al

 found active patient participation to be one of the main reasons for CAM use among individuals with MS who used CAM exclusively.

The present study found that the interviewees mainly rely on their own and others’ personal experiences to guide CAM decisions. In a study exploring CAM use among patients with cancer and patients with MS, Salamonsen

 similarly found that experience-based knowledge, such as bodily experiences, was perceived as a relevant source of knowledge for CAM decisions. Skovgaard et al

 found bodily sensations to be an essential tool guiding CAM use among exclusive CAM users with MS.

Some interviewees in the present study emphasized their academic backgrounds and linked them specifically to their critical stance toward conventional health care and their openness to alternative ways to improve health and well-being. This aspect is not widely present in the literature, which may be explained by the fact that the present study is based on data from a strategically selected sample of informants that allowed this specific perspective to be articulated. As women with high levels of education constitute the typical CAM user among individuals with MS in Denmark, the critical attitude toward conventional research practice may be relevant to understanding their underlying motives and choices as these choices may seem irrational to their conventional providers but represent a logical consequence of their critical approach.

People with a higher socioeconomic position have higher health literacy, defined as the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

 Health literacy is also closely linked to empowerment, defined as a process through which people gain greater control over decisions and actions affecting their health.

 The highly educated interviewees in this study expressed a need for self-reliance and not wanting to be “dictated” to by the system, emphasizing a skepticism of conventional health care. However, it may seem paradoxical that the interviewees did not seem to bear the same skepticism toward CAM and its practitioners as they did toward conventional treatment. They felt that CAM gave them holistic treatment for their disease and their well-being. This, combined with a feeling of being ignored, and in some cases having been ridiculed by medical doctors, may explain why their skepticism was mainly directed toward conventional health care. This is in line with previous research: CAM users have a higher level of health literacy,

 and CAM helps some patients feel empowered.

 Understanding the desires to gain greater control over one’s disease and to rely on one’s own experiences may help providers understand their patients’ motivations for using CAM.

Dialogue With Providers and Patient Safety 

The women in the present study indicated that dialogue with conventional providers about CAM could be difficult and was associated with negative experiences. Lack of trust in the conventional system and conventional medicine led a few to discontinue conventional treatment altogether. Gotta et al

G. Pearce, MBBS, FAFRM

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