'That would have been the perfect thing after diagnosis': development of a digital lifestyle management application in multiple sclerosis

Nicole Krause; Karin Riemann-Lorenz; Anne Christin Rahn; Jana Pöttgen; Sascha Köpke; Björn Meyer; Frithjof Thale; Herbert Temmes; Markus van de Loo; Stefan M Gold; Christoph Heesen

doi:10.1177/17562864221118729

'That would have been the perfect thing after diagnosis': development of a digital lifestyle management application in multiple sclerosis

Ther Adv Neurol Disord. 2022 Sep 6:15:17562864221118729. doi: 10.1177/17562864221118729. eCollection 2022.

Authors

Nicole Krause¹, Karin Riemann-Lorenz², Anne Christin Rahn^{2

3}, Jana Pöttgen^{2

4}, Sascha Köpke⁵, Björn Meyer⁶, Frithjof Thale⁶, Herbert Temmes⁷, Markus van de Loo⁷, Stefan M Gold^{2

8}, Christoph Heesen^{2

4}

Affiliations

¹ Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Martinistraße 52, 20246 Hamburg, Germany.
² Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
³ Nursing Research Unit, Institute for Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
⁴ Department of Neurology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
⁵ Institute of Nursing Science, Faculty of Medicine, University of Cologne and University Hospital Cologne, Cologne, Germany.
⁶ Research and Development Department, GAIA Group, Hamburg, Germany.
⁷ German Multiple Sclerosis Society, Federal Association, Hannover, Germany.
⁸ Charité-Universitätsmedizin Berlin, Klinik für Psychiatrie und Psychotherapie und Med. Klinik m.S. Psychosomatik, Berlin, Germany.

Abstract

Background: A multiple sclerosis (MS) diagnosis urges decision-making on immunotherapies, while persons with MS (PwMS) need to develop a coping concept in parallel. At this stage, PwMS ask how they themselves may contribute to controlling the disease. Evidence suggests that maintaining a healthy lifestyle (e.g. physical activity and stress management) is a key factor for healthy aging and preserving activity, while data on MS are complex.

Objectives: Following the Medical Research Council framework, this study aimed to develop and investigate the feasibility of a new digital health application that conveys evidence-based patient information about lifestyle factors in MS and engages PwMS in relevant behaviour change techniques.

Methods: Based on a digital health application promoting lifestyle management in breast cancer survivors, an MS-specific adaptation ('levidex') was developed. Feasibility was tested with 15 PwMS and eight MS experts. Subsequently, a six-week pilot study with eight PwMS was conducted. All participants provided feedback on practicability and acceptability via a questionnaire and took part in a semi-structured telephone interview. Levidex was revised after each test phase.

Results: The final levidex tool includes 16 modules, 177 references and several other functions. Feasibility results showed that PwMS and MS experts perceived levidex as understandable (14 out of 15; 6 out of 8), trustworthy (15 out of 15; 8 out of 8), and relevant (10 out of 15; 8 out of 8). Interviews revealed potential for improvement regarding the length and complexity of some content. Piloting of the revised version confirmed good feasibility and high acceptance. Most participants felt inspired to initiate (7 out of 8) or had already implemented (5 out of 8) lifestyle changes after working with levidex.

Conclusion: Results suggest that levidex is feasible and well-accepted by PwMS and MS experts. It might be a useful tool to support PwMS in adapting to their diagnosis and initiating health-promoting lifestyle changes.

Keywords: digital health application; eHealth; evidence-based medicine; feasibility testing; lifestyle intervention; multiple sclerosis; piloting.