Unfolding biographies-a participatory narrative study on how older adults with multiple sclerosis make sense of and manage their everyday lives.

BACKGROUND: Today, public health research on later life, including the literature on aging with multiple sclerosis, is often centered on aging as a biological phenomenon. By applying a participatory narrative approach, this study conveys how studying biographical aging provides important insights into the elements of aging that people find relevant and meaningful. Based on narratives told by older adults living with multiple sclerosis, we explore how sensemaking unfolds and shapes the management of later life with a chronic and progressive disease. METHODS: Twenty-four older adults (aged 65 years or older) living with multiple sclerosis in Denmark were engaged in taking photographs of their everyday lives and unfold the stories framed in their photographs in subsequent narrative interviews. Interview data were analyzed using a thematic narrative analysis. Aligned with the narrative approach, the findings of the analysis are presented using five cases chosen because they provide insight into the general patterns and themes identified across the narratives of the 24 participants. RESULTS: Based on their photographs, the participants narrated stories centered around what they perceived as meaningful activities and social identity when aging with a progressive disease. Three themes emerged from the analysis in relation to how participants made sense of and managed aging with multiple sclerosis: 1) a life woven by non-detachable life experiences, 2) envisioning the future and 3) challenging life circumstances. CONCLUSION: The findings of the study highlight that aging with multiple sclerosis is not only a biological phenomenon but also something nested in people's biographies. How people make sense of and manage their everyday lives is shaped by strategies from all parts of their lives-past, present and future. This understanding of later life with multiple sclerosis may enhance the care offered to older adults living with multiple sclerosis if greater emphasis is placed on the exploration of their narratives and the things they find meaningful.

Social relations and leisure activities as predictors of wellbeing among older adults with multiple sclerosis: A cross-sectional survey study in Denmark.

BACKGROUND: Due to the growing number of people aging with multiple sclerosis (MS), there has been a call for rehabilitation specially targeted older adults with MS in order to support them in better wellbeing, despite physical and cognitive impairment. However, the existing research within the area of rehabilitation has primarily focused on the physical and psychological aspects of aging with MS, omitting the social element. OBJECTIVE: This study aims to examine how social relations and engagement in leisure activities predict wellbeing among older adults with MS living in Denmark. Furthermore, the study aims to identify which sociodemographic and health-related factors are the most important in predicting whether older adults with MS face challenges in participating in leisure activities and experiencing different kinds of social relations. METHOD: A cross-sectional survey was designed to measure social relations, wellbeing, and engagement in leisure activities among older adults with MS. Of the 4,329 people over 65 years diagnosed with MS in Denmark in 2022, 2,574 (59.46%) were invited to participated in the study, and 1,107 (43.03%) ended up answering the survey. Linear and logistic regression analyses and dominance analyses were conducted to examine the associations between wellbeing, leisure activities, social relations, sociodemographic and health-related factors. RESULTS: The results of the study show that perceived emotional social support (mean difference 8.69, 95% CI 5.23; 12.14) and perceived instrumental social support (mean difference 4.15, 95% CI 0.95; 7.35), were associated with better wellbeing among older adults with MS. Perceived strained social relations (mean difference -7.95, 95% CI -10.66; -5.26) were on the contrary associated with lower levels of wellbeing. Strained social relations were the most important predictors of wellbeing accounting for 59% of the predicted variance. Experiencing social emotional support from friends, coworkers, or neighbors (39% of the predicted variance), experiencing instrumental social support from children or children in law (43% of the predicted variance), and experiencing strained social relations with partner (48% of the predicted variance) constituted he most important predictor of wellbeing. Engagement in five out of fourteen leisure activities were associated with better wellbeing among the participants. The leisure activities there was found to be the most important predictor of wellbeing represented both social (37% of the predicted variance), physical (18% of the predicted variance), and creative elements (13% of the predicted variance). Finally, cohabitation was found to be the most important predictor of having perceived emotional social support (59% of the predicted variance), instrumental social support (78.9% of the predicted variance) and strained social relations (18.8% of the predicted variance) and mobility was found to be the most important predictor of challenges in participating in leisure activities (81.8% of the predicted variance). CONCLUSION: The findings of the study highlight that rehabilitation targeting older adults with MS should focus on both physical, psychological, and social elements of peoples' everyday life. Further, the results indicate that future rehabilitation focusing on social elements of aging with MS should take into account health and sociodemographic characteristics such as cohabitation, mobility, age, and sex, as these potentially relate to participation in leisure activities as well as social relations among older adults.

Dietary Patterns and Their Associations with Symptom Levels Among People with Multiple Sclerosis: A Real-World Digital Study.

INTRODUCTION: The objective of the study was to investigate long-term food intake patterns and establish possible associations between the inferred dietary habits and levels of reported symptoms among people with multiple sclerosis (MS) in Denmark. METHODS: The present study was designed as a prospective cohort study. Participants were invited to register daily food intake and MS symptoms and were observed during a period of 100 days. Dropout and inclusion probabilities were addressed using generalized linear models. Dietary clusters were identified among 163 participants using hierarchical clustering on principal component scores. Associations between the dietary clusters and the levels of self-assessed MS symptoms were estimated using inverse probability weighting. Furthermore, the effect of a person's position on the first and second principal dietary component axis on symptom burden was investigated. RESULTS: Three dietary clusters were identified: a Western dietary cluster, a plant-rich dietary cluster and a varied dietary cluster. Analyses further indicated a vegetables-fish-fruit-whole grain axis and a red-meat-processed-meat axis. The plant-rich dietary cluster showed reduction in symptom burden in nine pre-defined MS symptoms compared to the Western dietary cluster (between 19 and 90% reduction). This reduction was significant for pain and bladder dysfunction as well as across all nine symptoms (pooled p value = 0.012). Related to the two dietary axes, high intake of vegetables resulted in 32-74% reduction in symptom burden compared to low levels of vegetable intake. Across symptoms, this was significant (pooled p value = 0.015), also regarding walking difficulty and fatigue. CONCLUSIONS: Three dietary clusters were identified. Compared to levels of self-assessed MS-related symptoms, and adjusted for potential confounders, the results suggested less symptom burden with increased intake of vegetables. Although the research design limits the possibilities of establishing causal inference, the results indicate that general guidelines for healthy diet may be relevant as a tool in coping with MS symptoms.

Neurologists' views on patient reported outcomes in multiple sclerosis care.

Background: The value that patient reported outcomes (PROs) can bring to the clinical encounter is increasingly being recognized. Within the field of Multiple Sclerosis (MS), a number of activities have been initiated internationally with the aim of integrating PROs in MS care. Integration of PROs in MS care will, among other things, require MS neurologists' acceptance of PROs. This qualitative study aimed to explore MS specialized neurologists' view on the potentials and barriers for the use of PROs in the clinical setting. Methods: Eight neurologists specialized in MS participated in a series of individual in-depth semi-structured interviews. Interviews were audio-recorded and transcribed. A thematic analysis was conducted using a reflexive thematic approach to identify meaning units and themes emerging from the interviews. The analysis focused on barriers and potentials for PROs that relate to the specific characteristics of MS. Results: Three main themes emerged from the data. "The role of PROs in describing the patient's situation" describes how informants perceived MS as a complex disease, and in this context, PROs can bring forth new or otherwise hidden information, but they may also blur the picture. The theme "The validity of PROs reported by MS patients may be questionable" describes how impairments caused by MS, such as cognitive and physical disabilities, were identified as risk factors that could cause unreliable self-reported outcome measures within this patient group. Finally, the theme "Involving the patient" regards how the clinical conversation was viewed as the most important source of patient reported information, but at the same time PROs carry the potential to enhance shared decision making. Conclusion: This study indicates that, according to MS neurologists, integration of PROs in MS clinical practice, though possibly valuable, is not without challenges. Possible benefits of PROs include the ability to bring forth otherwise hidden information on the patient's health status and the enhancement of shared decision making. Barriers include difficulties in capturing the full situation of the patient via PROs due to the complexity of MS as well as the issue of various MS-related impairments compromising the validity of PROs reported by MS patients.

Patient perspectives on patient-reported outcomes in multiple sclerosis treatment trajectories: A qualitative study of why, what, and how?

BACKGROUND: Interest in patient-reported outcomes has been growing in multiple sclerosis research and clinical care in recent years. This situation reflects the need for developing, testing, and integrating measures that adequately capture patients' perspectives on symptoms, functional capacity, health status, and health-related quality of life. However, the patient perspective on the relevance, content, and use of patient-reported outcomes is yet to be investigated. Hence, this study aims to investigate the perspectives of people with multiple sclerosis on the value of patient-reported outcomes in clinical encounters, the most important aspects of living with multiple sclerosis that should be reflected in these reports, and possible opportunities and barriers for integrating this data into clinical care. METHODS: A qualitative study was conducted to capture patient perspectives in a Danish population of people with multiple sclerosis. Initially, two focus group interviews were conducted with a total of 11 participants to explore their perspectives on patient-reported outcomes and related prospects and barriers. Subsequently, nine individual interviews were conducted to further investigate the identified aspects, opportunities, and barriers to use patient-reported outcomes in clinical care and treatment. RESULTS: In general, the informants were motivated to report patient-reported outcomes, and they believed these reports to be relevant in clinical encounters as well as to have potential to promote patient involvement by focusing on current challenges for others with this disease. However, differences in the perceived need for reporting patient-reported outcomes were detected regarding the stage in the multiple sclerosis care trajectory and in relation to the disease phenotypes. In terms of domains to be incorporated into patient-reported outcomes, a total of 28 were identified by the informants, including neurological symptoms, cognitive impairments, mental health and well-being, self-care activities, and social challenges. Several factors for integrating patient-reported outcomes into clinical care emerged as important, in particular related to timing and frequency of reporting patient reported outcomes, considerations of cognitive impairments, the need for individualized approaches to patient-reported outcomes, and the need for active use of these reports for adjustment of treatment approaches in clinical encounters. CONCLUSION: From the perspective of people with multiple sclerosis, patient-reported outcomes hold important potential for enhanced patient involvement leading to a more multifaceted agenda in clinical consultations. However, patient-reported outcomes need to be comprehensive and encompass a broad range of measures regarding neurological symptoms, cognitive impairments, mental health and well-being, self-care activities, and social challenges to adequately capture and support the needs of people with multiple sclerosis in clinical encounters. It is important to address barriers for integration of patient-reported outcomes into clinical care, with the aim of preventing misuse. Future studies should focus on the synergy between perspectives from both patients and clinicians to understand how integration of patient-reported outcomes in clinical care can succeed.

The lived experience of uncertainty in everyday life with MS.

PURPOSE: This article examines how issues of control, certainty, and uncertainty are experienced and managed in everyday life with multiple sclerosis (MS) and explores the ways in which people living with MS make sense of these experiences. MATERIALS AND METHODS: Qualitative interviews with 23 women and men diagnosed with MS and four relatives were carried out in Denmark. Drawing on the notion of "phenomenological uncertainty," a thematic approach was used to analyse the interview data. RESULTS: Three themes characterise participants' experience of uncertainty: the body and issues of control; symptom fluctuations and disease progression; understanding and interpreting embodied MS experiences. Shared, between the themes, is a focus on the body and multi-faceted bodily aspects of uncertainty across diverse temporalities. CONCLUSION: Phenomenological uncertainty shapes and pervades the everyday lived experience of MS in the present and future. Gaining a sense of control and certainty in the face of daily uncertainty demands ongoing self-surveillance, and the evaluation and reconciliation of fluctuating MS symptom expressions and disease progression with personal needs, abilities, and management strategies.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals and physicians should consider the lived experience of uncertainty in everyday life with MS in all their contacts with people living with MS.The multi-faceted uncertainties experienced by people living with MS should be actively acknowledged and incorporated in discussions of MS rehabilitation options and when integrating MS guideline content into activities-of-daily-living advice.Discussions of MS medical treatment options should actively consider and integrate the multi-faceted uncertainties experienced by people living with MS.

"I need personal experiences or some sort of documentation": a qualitative study on where people with multiple sclerosis seek information on dietary and herbal supplements.

BACKGROUND: The use of dietary and herbal supplements (DIHES) is widespread among people with multiple sclerosis (PwMS). PwMS are a highly informed patient group, and they use several types of sources to seek information on subjects related to their disease. However, it is still unknown where PwMS seek information about DIHES. It is important that PwMS make decisions about DIHES based on accurate, useful and accessible information. Therefore, the aim of this study was to explore where PwMS seek information on DIHES and how they experience and engage with this information. METHODS: Semi-structured interviews were conducted with eighteen PwMS using DIHES. Participants were selected from a cross-sectional survey. Diversity sampling was used, based on relevant characteristics such as gender and number of DIHES used during the past 12 months. The interviews were conducted face-to-face or over the telephone and lasted between 30 min and 1 hour. The interviews were recorded, transcribed verbatim, and analyzed using thematic network analysis in NVivo 12 Pro software. RESULTS: Three main themes emerged in the analysis: i) engaging with healthcare professionals (HCPs) regarding DIHES, ii) social networks as a source of information regarding DIHES, and iii) reliance on bodily sensations. Most participants navigated all three types of sources. All participants had at some point discussed DIHES with an HCP. Information from HCPs was considered reliable and valuable, but HCPs were viewed as uncommitted to the dialogue about DIHES. Recommendations from others were often the driver of decisions regarding use of DIHES. However, the information from PwMS' networks could be overwhelming and difficult to navigate. Finally, PwMS relied on their own experiences regarding DIHES and let their bodily sensations guide their use of DIHES. CONCLUSIONS: Participants often rely on all three types of information sources to create a nuanced and comprehensive information base. However, PwMS may feel overwhelmed or confused with all the information they have gathered. These findings indicate the need for better guidance for PwMS concerning DIHES and an openness among HCPs to engage in dialogue.

Effect of Acupuncture on Cytokine Levels in Persons with Multiple Sclerosis: A Randomized Controlled Trial.

Background: Cytokines have been found to play a role in the disease activity of multiple sclerosis (MS). Previous studies indicate that acupuncture can affect cytokine levels in persons with other inflammatory diseases. Objectives: The aim of this study is to investigate the effect of acupuncture on cytokine levels and health-related quality of life (HRQoL) in persons with MS. Materials and Methods: A single-blind, randomized controlled trial was performed. Participants (n = 66) were randomized into three groups (real acupuncture, sham acupuncture, and reference). Participants in the real acupuncture and sham groups received six treatments during a period of 4 weeks. The serum levels of 11 pro- and anti-inflammatory cytokines (IFNγ, IL-1ß, IL-6, IL-8, IL-12p70, IL-13, TNFα, IL-10, IL-4, IL-2, and IL-17A) were assessed at baseline, after 2 and 4 weeks of treatment, and 4 weeks after the final treatment. Changes in HRQoL were assessed using the Functional Assessment of Multiple Sclerosis questionnaire. Results: No statistically significant differences in plasma levels between the three groups were seen for either of the cytokines, nor were there any differences between the groups for HRQoL. Conclusions: In this study, the authors could not demonstrate that a 4-week acupuncture treatment had a measurable effect on the plasma levels of seven selected cytokines or on HRQoL among people with MS. The trial was registered with the ISRCTN registry as ISRCTN34352011.

How people with multiple sclerosis experience the influence of nutrition and lifestyle factors on the disease.

Purpose: Increasing knowledge suggests that nutrition and lifestyle factors affect multiple sclerosis. This study explores how people with multiple sclerosis experience daily multiple sclerosis disease activity and the influence of nutrition and lifestyle factors (e.g., stress, sleep, and environmental temperature).Methods: Four phases mix qualitative and quantitative elements in an exploratory study. The initial two phases consisted of an exploratory study with 14 participants followed by 15 semi-structured interviews. Results from the two first phases were substantiated in a survey completed by 425 respondents (response rate: 42.5%). Finally, findings and inconsistencies were elaborated in three focus group interviews.Results: In the initial exploratory study, several of the participants linked nutrition and lifestyle factors to disease activity. Results from the semi-structured interviews showed that particularly stress, meat, fatty foods, and processed sugar were perceived to have a negative impact on disease activity, and some participants had experienced immediate effects of these factors on their disease activity. The survey supported these findings that were further elaborated in focus groups.Conclusion: People with multiple sclerosis perceive nutrition and lifestyle to affect daily disease activity. Individuals who have experienced links between their multiple sclerosis, and nutrition and lifestyle attribute some of these changes to e.g., stress, and the consumption of sugar, meat, and fatty food.Implications for rehabilitationA majority of the participants in this study perceived nutrition and lifestyle factors to have an effect on their multiple sclerosis, particularly stress, meat, fatty foods, and processed sugar.Some participants with multiple sclerosis experienced that nutrition, stress, environmental temperature, and physical activity had a direct effect on the severity of daily symptom manifestations.Nutrition and lifestyle factors that potentially influence multiple sclerosis disease activity should be considered when organizing rehabilitation and care to better meet the needs of the individual with multiple sclerosis.

Identification of Factors That Motivate People With Multiple Sclerosis to Participate in Digital Data Collection in Research: Sequential Mixed Methods Study.

BACKGROUND: Digital data collection has the potential to reduce participant burden in research projects that require extensive registrations from participants. To achieve this, a digital data collection tool needs to address potential barriers and motivations for participation. OBJECTIVE: This study aimed to identify factors that may affect motivation for participation and adoption of a digital data collection tool in a research project on nutrition and multiple sclerosis (MS). METHODS: The study was designed as a sequential mixed methods study with 3 phases. In phase 1, 15 semistructured interviews were conducted in a Danish population of individuals with MS. Interview guide frameworks were based on dimensions from the electronic health literacy framework and the Health Education Impact Questionnaire. Data from phase 1 were analyzed in a content analysis, and findings were used to inform the survey design in phase 2 that validates the results from the content analysis in a larger population. The survey consisted of 14 items, and it was sent to 1000 individuals with MS (response rate 42.5%). In phase 3, participants in 3 focus group interviews discussed how findings from phases 1 and 2 might affect motivation for participation and adoption of the digital tool. RESULTS: The following 3 categories related to barriers and incentives for participation were identified in the content analysis of the 15 individual interviews: (1) life with MS, (2) use of technology, and (3) participation and incentives. Phase 1 findings were tested in phase 2's survey in a larger population (n=1000). The majority of participants were comfortable using smartphone technologies and participated actively on social media platforms. MS symptoms did cause limitations in the use of Web pages and apps when the given pages had screen clutter, too many colors, or too small buttons. Life with MS meant that most participants had to ration their energy levels. Support from family and friends was important to participants, but support could also come in the form of physical aids (walking aids and similar) and digital aids (reminders, calendar functions, and medication management). Factors that could discourage participation were particularly related to the time it would take every day. The biggest motivations for participation were to contribute to research in MS, to learn more about one's own MS and what affects it, and to be able to exchange experiences with other people with MS. CONCLUSIONS: MS causes limitations that put demands on tools developed for digital data collection. A digital data collection tool can increase chances of high adoption rates, but it needs to be supplemented with a clear and simple project design and continuous communication with participants. Motivational factors should be considered in both study design and the development of a digital data collection tool for research.

Self-Care Activities among People with Multiple Sclerosis in Denmark: Use and User Characteristics.

BACKGROUND: People with multiple sclerosis (PwMS) are known to use a wide range of medical and non-medical treatments. This study aims at investigating the use of self-care activities within this patient group. MATERIAL AND METHODS: The study follows a descriptive cross-sectional design based on an online survey among members of the Danish Multiple Sclerosis Society's permanent respondent panel. RESULTS: The results of the study indicate that the respondents carry out a wide variety of self-care activities. These activities comprise conventional activities as well as complementary and alternative medicine (CAM)-based activities. The self-care activities are mainly kept up for non-specific and preventive purposes, with primarily personal or non-specific issues as the primary source of inspiration. Comparative analyses indicate that respondents with a low level of self-care more often are men, belong to the young age group and have a low level of education, a low level of self-assessed state of health, a low level of self-assessed quality of life (QoL), and an unknown subdiagnosis. Respondents with a high level of self-care are more often women and have a high level of self-assessed QoL. CONCLUSIONS: A wide variety of self-care activities are carried out by PwMS, comprising conventional as well as CAM-based activities. The purposes of such activities are manifold, but they are mainly of non-specific and preventive nature. Differences in background characteristics exist between groups of low and high levels of self-care.

Use and users of complementary and alternative medicine among people with multiple sclerosis in Denmark.

BACKGROUND: It is known that complementary and alternative medicine (CAM) is popular among people with multiple Sclerosis (MS) and that use is widespread. However, very limited knowledge exists about use and users of CAM among people with MS in a Danish context. AIMS: The overall aim of the thesis is to investigate how and why people with MS in Denmark include CAM in managing their life with a chronic disease and to discuss their experiences and beliefs linked to CAM use.   METHODS: A mixed methods research design was applied, combining an Internet-based survey with two qualitative in-depth interview studies. A total of 6,850 people with MS from the five Nordic countries, of these 3,500 from Denmark, were invited to participate in the survey. The average response rate was 56.1%. Based on analyses of the Danish survey data, two specific issues regarding the use of CAM were selected for further investigation and two qualitative interview studies were performed (n = 17, n = 11), using program theory and meaning categorization as analytical tools. RESULTS: The results of the study indicate that the use of CAM among people with MS is widespread in Denmark as well as in the other Nordic countries. The results furthermore suggest that this use is generally embedded in a preventative, autonomous approach to treatment and that the users' choices regarding CAM may be related to many personal factors and do not necessarily represent a distrust of the medical system. PERSPECTIVES: The results of the study point to the relevance of healthcare professionals engaging in understanding patients' different motives for - and experiences with - using different types of treatments. Thereby, the results of the study also point to the importance of enhancing and qualifying communication between patients and representatives of conventional healthcare systems regarding the patients' use of CAM, both with the aim of mutual learning and for reasons of safety.

Exclusive use of alternative medicine as a positive choice: a qualitative study of treatment assumptions among people with multiple sclerosis in denmark.

BACKGROUND: A survey of members of the Danish MS Society revealed that a minority of MS patients choose to forgo all types of conventional treatment and use complementary and alternative medicine (CAM) exclusively. A qualitative follow-up study was performed to elucidate the choice of exclusive CAM use by exploring treatment assumptions among a group of exclusive CAM users. METHODS: The study was based on a phenomenological approach. Semistructured in-depth qualitative interviews were conducted with 17 participants, using program theory as an analytical tool, and emerging themes were extracted from the data through meaning condensation. RESULTS: Four themes characterized the participants' treatment assumptions: 1) conventional medicine contains chemical substances that affect the body in negative ways; 2) CAM treatments can strengthen the organism and make it more capable of resisting the impact of MS; 3) the patient's active participation is an important component of the healing process; 4) bodily sensations can be used to guide treatment selection. CONCLUSIONS: Exclusive use of CAM by MS patients may reflect embracing CAM rather than a rejection of conventional medicine. Health-care practitioners, patient organizations, and health authorities within the MS field should be aware of possible changes in patients' attitudes toward both CAM and conventional treatment interventions.

Use of bodily sensations as a risk assessment tool: exploring people with Multiple Sclerosis' views on risks of negative interactions between herbal medicine and conventional drug therapies.

BACKGROUND: Most users of complementary and alternative medicine (CAM) combine it with conventional medicine. Recent risk assessment studies have shown risks of negative interactions between CAM and conventional medicine, particularly when combining herbal medicine and conventional drug therapies (CDT). Little is known about the way users consider such risks. The present paper aims to gain knowledge about this issue by exploring views on risks of negative interactions when combining herbal medicine and CDT among people with multiple sclerosis (MS). METHODS: This paper draws on a qualitative follow-up study on a survey among members of the Danish MS Society. Semi-structured, in-depth qualitative interviews were conducted with a strategic selection from the survey respondents. The study was inspired by a phenomenological approach and emerging themes were extracted from the data through meaning condensation. RESULTS: Four themes characterized the informants' views on risks of negative interactions when combining herbal medicine and CDT: 1) 'naturalness' in herbal medicine; 2) 'bodily sensations' as guidelines; 3) trust in the CAM practitioner; 4) lack of dialogue with medical doctor. CONCLUSIONS: Generally, the combination of herbal medicine and CDT was considered by the informants to be safe. In particular, they emphasized the 'non-chemical' nature of herbal medicine and of their own bodily sensations as warrants of safety. A trustful relation to the CAM practitioner furthermore made some of them feel safe in their use of herbal medicine and CDT in combination. The informants' use of bodily sensations as a non-discursive risk assessment may be a relevant element in understanding these issues.

Differences between users and non-users of complementary and alternative medicine among people with multiple sclerosis in Denmark: a comparison of descriptive characteristics.

AIMS: The aim of this study was to investigate differences in socio-economic characteristics between CAM users and CAM non-users among people with MS in Denmark as well as differences in characteristics related to the use of CAM among CAM users and the use of conventional treatments among CAM non-users. METHODS: An internet-based questionnaire was used to collect data from 3361 patient members of the Danish MS society. A letter with a personal code was sent to all respondents, asking them to fill out the questionnaire online. Reminders to non-respondents were sent twice and the final response rate was 55.5%. Statistical associations were presented as odds ratios and with respective 95% confidence intervals. RESULTS: People with MS in Denmark use a wide range of CAM treatments for a variety of reasons. CAM users were more likely to be of female gender, 18-40 years of age, educated at bachelor level or above, and have a high income compared to CAM non-users (p < 0.05). CAM users more often addressed non-specific/preventive treatment purposes through their use of CAM treatments, they communicated less often with a medical doctor about the CAM treatments used, and they experienced less side effects as well as less positive effects from the CAM treatments used when compared with the use of conventional treatments among CAM non-users (p < 0.05). CONCLUSIONS: People with MS in Denmark reported use of a large range of CAM treatments. CAM users differed from CAN non-users in relation to socio-economic factors as well as treatment characteristics.

An investigation of multidisciplinary complex health care interventions--steps towards an integrative treatment model in the rehabilitation of people with multiple sclerosis.

BACKGROUND: The Danish Multiple Sclerosis Society initiated a large-scale bridge building and integrative treatment project to take place from 2004-2010 at a specialized Multiple Sclerosis (MS) hospital. In this project, a team of five conventional health care practitioners and five alternative practitioners was set up to work together in developing and offering individualized treatments to 200 people with MS. The purpose of this paper is to present results from the six year treatment collaboration process regarding the development of an integrative treatment model. DISCUSSION: The collaborative work towards an integrative treatment model for people with MS, involved six steps: 1) Working with an initial model 2) Unfolding the different treatment philosophies 3) Discussing the elements of the Intervention-Mechanism-Context-Outcome-scheme (the IMCO-scheme) 4) Phrasing the common assumptions for an integrative MS program theory 5) Developing the integrative MS program theory 6) Building the integrative MS treatment model. The model includes important elements of the different treatment philosophies represented in the team and thereby describes a common understanding of the complexity of the courses of treatment. SUMMARY: An integrative team of practitioners has developed an integrative model for combined treatments of People with Multiple Sclerosis. The model unites different treatment philosophies and focuses on process-oriented factors and the strengthening of the patients' resources and competences on a physical, an emotional and a cognitive level.

[Use of complementary and alternative medicine at Danish rehabilitation institutions and drug centres]. / Komplementær og alternativ medicin bruges på danske rehabiliterings- og rusmiddelinstitutioner.

The study has investigated the use of complementary and alternative medicine (CAM) at Danish rehabilitation institutions and drug centres. Questionnaires were sent to 147 centre leaders at 52 rehabilitation institutions and 95 drug centres. CAM is offered at 37.5% of the rehabilitation institutions and at 61.1% of the drug centres. Twenty-one different CAM modalities were used. Acupuncture and NADA-acupuncture had the highest prevalence. Motives for offering CAM were most often experienced effects within the institution and inspiration from other institutions.

Use of complementary and alternative medicine at Norwegian and Danish hospitals.

BACKGROUND: Several studies have found that a high proportion of the population in western countries use complementary and alternative medicine (CAM). However, little is known about whether CAM is offered in hospitals. The aim of this study was to describe to what extent CAM is offered in Norwegian and Danish hospitals and investigate possible changes in Norway since 2001. METHODS: A one-page questionnaire was sent to all included hospitals in both countries. The questionnaire was sent to the person responsible for the clinical activity, typically the medical director. 99 hospitals in the authority (85%) in Norway and 126 in Denmark (97%) responded. Given contact persons were interviewed. RESULTS: CAM is presently offered in about 50% of Norwegian hospitals and one-third of Danish hospitals. In Norway CAM was offered in 50 hospitals, 40 of which involved acupuncture. 19 hospitals gave other alternative therapies like biofeedback, hypnosis, cupping, ear-acupuncture, herbal medicine, art therapy, homeopathy, reflexology, thought field therapy, gestalt therapy, aromatherapy, tai chi, acupressure, yoga, pilates and other. 9 hospitals offered more than one therapy form. In Denmark 38 hospitals offered acupuncture and one Eye Movement Desensitization and Reprocessing Light Therapy. The most commonly reported reason for offering CAM was scientific evidence in Denmark. In Norway it was the interest of a hospital employee, except for acupuncture where the introduction is more often initiated by the leadership and is more based on scientific evidence of effect. All persons (except one) responsible for the alternative treatment had a medical or allied health professional background and their education/training in CAM treatment varied substantially. CONCLUSIONS: The extent of CAM being offered has increased substantially in Norway during the first decade of the 21(st) century. This might indicate a shift in attitude regarding CAM within the conventional health care system.

Combination treatment of people with multiple sclerosis based on collaboration between conventional healthcare providers and alternative practitioners--patient perspectives on outcomes.

The use of alternative and complementary medicine (CAM) is prevalent among People with Multiple Sclerosis (PwMS) in Denmark as well as in other Western countries. Many PwMS combine conventional treatments and CAM; however there is little research-based knowledge about the outcomes that PwMS achieve from combined treatments. The purpose of this article is to describe which outcomes PwMS have experienced from combination treatment based on collaboration between conventional healthcare providers and CAM practitioners. A second purpose is to identify and study aspects of the courses of treatment that have generally characterized the achieved outcomes. During the course of their treatment, 59 PwMS participated in semi-structured individual or group interviews. The analyses show that the participants' experienced outcomes can be classified in four ways 1) short-term positive outcomes; 2) long-term positive outcomes in specific areas; 3) long-term positive outcomes on the patient's overall life situation; 4) no and/or negative outcomes. The analyses also show that two aspects of the courses of treatment have generally characterized the outcomes achieved: a) participants' perception of the patient's role; b) participants' perception of treatment function. Outcomes are shown to differ for different PwMS, and results indicate that the combined interventions have played a role in a dynamic and process-oriented interaction with the entire life situation of the individual patient. The results described in the article further suggest that physical as well as cognitive learning constitutes an important element in understanding the dynamics of complex courses of treatment.

Types of treatment collaboration between conventional and alternative practitioners-results from a research project at a Danish MS hospital.

INTRODUCTION: More than 50% of People with Multiple Sclerosis (PwMS) in Denmark use alternative treatment. Most of them combine alternative and conventional treatment, but PwMS often find that they engage in parallel courses of treatment between which there is no dialogue, coordination or synergy. For this reason the Danish Multiple Sclerosis Society conducted a research project to develop and examine different models for collaboration between conventional and alternative treatment providers. METHODS: The empirical material consisted of 10 individual interviews with practitioners, a group interview with practitioners, a group interview with professional staff at the Danish Multiple Sclerosis hospital that provided the organisational framework for the project, interviews with 59 patients and written responses from participating treatment providers in connection with 29 practitioner-researcher seminars held during the period 2004-2010. RESULTS: Collaboration between researchers and the treatment team resulted in the development and examination of several models which describe the strengths and weaknesses of various types of collaboration. The models show that the various types of collaboration place different requirements on the degree of 1) mutual acknowledgement and understanding among practitioners and 2) flexibility and resources in the organizational framework. The analyses also point to the fact that the degree of patient activity must be considered in relation to a given type of collaboration. DISCUSSION: The relationship between integration and pluralism can contribute to a fruitful discussion in regards to the value of treatment collaboration. In addition to the many positive perspectives that characterise integration of different treatment modalities the project points to the importance of not overlooking the opportunities, values and potential inherent in a pluralistic ideal in the form of patients' own active efforts and the dynamism that can arise when the patient becomes a co-informant, co-coordinator and/or co-integrator.