Perceived usefulness of digital self-tracking among people with multiple sclerosis.

Background and aim: Self-care technologies may support patients with multiple sclerosis (MS) in their everyday disease management by enabling self-monitoring of various health indicators, such as symptom levels and physical activity levels. The aim of this study was to assess the usefulness of tracking self-selected MS- and health-related measures via a digital self-tracking tool for people with MS (PwMS) over a period of six weeks. Methods: An initial development phase was followed by a six-week testing phase with 58 test participants. The evaluation phase followed a sequential, exploratory mixed-methods design, consisting of 14 interviews with test participants during the testing phase, followed by a survey of all participants after the testing phase to confirm and elaborate on the interview findings. The interview data were analyzed through a five-step thematic analysis, and the survey data were analyzed descriptively. Results: The results of the mixed-methods study can be summarized in the following findings: (1) Use of the self-tracking tool assisted users in clarifying patterns regarding their symptoms, physical activity, sleep quality and emotional well-being. (2) Tracking physical activity and, to some extent, sleep had a motivational effect on participants in relation to increasing activity and/or changing habits. (3) Data quality/accuracy constitutes an important criterion for considering the self-tracking tool relevant. (4) The self-tracking tool may support dialogue between patients and healthcare professionals, and/or it may potentially play a role in peer-to-peer support. Conclusion: The results of the present study indicate that the self-tracking of symptoms, sleep, physical activity and other measures may contribute positively to everyday self-management among PwMS. Professional support in interpreting and acting upon the data should be considered.

Reasons for Engaging in Complementary and Alternative Medicine Among Highly Educated Women With Multiple Sclerosis.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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.

"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.

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.