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Health services research in neurological conditions – Charlotte Ytterberg's research group

Health services research in neurological disorders is an interdisciplinary field of research. Our research aims to contribute to improved health in people with neurological disability and in their families.

Part of the:

Research focus

Our research includes studies of associations between neurological disease/injury and health, function, activity and participation in society among individuals and their families. Also health care interventions are studied, both from an individual, group and a social perspective, as well as the overall relation to efficiency and cost.

Our research group also study needs for health care interventions, in people with neurological disabilities and their families, as well as utilization of these efforts and satisfaction with care.

News and activities

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Podcast: "Fysion säger..."

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Marie Kierkegaard guest on the the MS podcast

Marie Kierkegaard has worked in neurology since 1987. In this episode she talks about fatigue, brain health, answers questions and much more. Available in Swedish only.

Publications

Selected publications

  • Article: HEALTH EXPECTATIONS. 2024;27(5):e70057
    Lindblom S; Flink M; von Koch L; Laska AC; Ytterberg C
  • Article: HEALTH EXPECTATIONS. 2024;27(4):e14154
    Johnson ST; Ytterberg C; Peterson E; Johansson S; Kierkegaard M; Gottberg K; Flink M
  • Article: MULTIPLE SCLEROSIS AND RELATED DISORDERS. 2023;70:104481
    Englund S; Kierkegaard M; Burman J; Fink K; Fogdell-Hahn A; Gunnarsson M; Hillert J; Langer-Gould A; Lycke J; Nilsson P; Salzer J; Svenningsson A; Mellergard J; Olsson T; Longinetti E; Frisell T; Piehl F
  • Review: CLINICAL REHABILITATION. 2023;37(2):162-176
    Tuvemo Johnson S; Flink M; Peterson E; Gottberg K; Elf M; Johansson S; Kierkegaard M; Ytterberg C
  • Conference publication: INTERNATIONAL JOURNAL OF STROKE. 2023;18(1):24-25
    Lindblom S; Flink M; Koch L; Ytterberg C
  • Conference publication: MULTIPLE SCLEROSIS JOURNAL. 2022;28(3_SUPPL):405-406
    Englund S; Piehl F; Kierkegaard M
  • Article: BMJ OPEN. 2022;12(7):e061325
    Kierkegaard M; Peterson E; Tuvemo Johnson S; Gottberg K; Johansson S; Elf M; Flink M; Ytterberg C
  • Article: JOURNAL OF NEUROMUSCULAR DISEASES. 2021;8(6):1079-1088
    Kierkegaard M; Gottberg K; Johansson S; Littorin S; Sandstedt P; Ytterberg C; Holmqvist LW
  • Article: DISABILITY AND REHABILITATION. 2021;43(17):2403-2410
    Gottberg K; Ytterberg C; Sandstedt P; Johansson S; Kierkegaard M
  • Article: HEALTH EXPECTATIONS. 2021;24(3):905-916
    Lindblom S; Flink M; Elf M; Laska AC; von Koch L; Ytterberg C
  • Article: JOURNAL OF THE AMERICAN MEDICAL DIRECTORS ASSOCIATION. 2020;21(12):1885-1892
    Lindblom S; Flink M; Sjostrand C; Laska A-C; von Koch L; Ytterberg C
  • Article: INTERNATIONAL JOURNAL OF INTEGRATED CARE. 2020;20(1):11
    Lindblom S; Ytterberg C; Elf M; Flink M
  • Article: JOURNAL OF NEUROMUSCULAR DISEASES. 2018;5(4):439-449
    Sandstedt P; Littorin S; Johansson S; Gottberg K; Ytterberg C; Kierkegaard M
  • Conference publication: INTERNATIONAL JOURNAL OF INTEGRATED CARE. 2018;18:317
    Lindblom S; Flink M; von Koch L; Ytterberg C
  • Article: JOURNAL OF SEXUAL MEDICINE. 2017;14(6):797-803
    Nilsson MI; Fugl-Meyer K; von Koch L; Ytterberg C
  • Article: NEUROMUSCULAR DISORDERS. 2017;27(2):153-158
    Kierkegaard M; Petitclerc E; Hebert LJ; Gagnon C
  • Article: JOURNAL OF CLINICAL PSYCHOLOGY. 2016;72(7):651-662
    Gottberg K; Chruzander C; Backenroth G; Johansson S; Ahlstrom G; Ytterberg C
  • Article: JOURNAL OF THE NEUROLOGICAL SCIENCES. 2016;362:251-257
    Kierkegaard M; Lundberg IE; Olsson T; Johansson S; Ygberg S; Opava C; Holmqvist LW; Piehl F
  • Article: PLOS ONE. 2015;10(12):e0144344
    Singam A; Ytterberg C; Tham K; von Koch L
  • Article: STROKE. 2015;46(9):2688-2690
    Minet LR; Peterson E; von Koch L; Ytterberg C
  • Show more

Funding

Grants

  • Fewer falls in multiple sclerosis - a randomized controlled study
    Promobilia Foundation
    1 January 2025 - 31 December 2027
  • A self-management program to prevent falls in ambulatory and non-ambulatory people with multiple sclerosis - a randomized controlled trial
    the Regional Agreement on Medical Training and Clinical Research (ALF) between Region Stockholm and ̽»¨¾«Ñ¡
    1 January 2024 - 31 December 2026
  • A self-management program to prevent falls in ambulatory and non-ambulatory people with multiple sclerosis – a randomized controlled trial
    the Center for Innovative Medicine (CIMED)
    1 January 2024 - 30 April 2026
  • Swedish Research Council
    1 January 2024 - 31 January 2026
    The purpose is to evaluate the effects of a self-management fall prevention program for people with multiple sclerosis (PwMS): Is the program effective in reducing number of falls in PwMS at 6- and 12-months? What contextual factors, mechanisms of impact and implementation aspects can likely explain the effects of the program? What is the cost effectiveness of the program at 12 months? The project is carried out by our interdisciplinary team including a person with MS. The team is experienced in fall prevention, self-management, and randomized control trials (RCT) with both qualitative and quantitative methods including health economic evaluations. The program is evaluated in a RCT regarding effect, process, and cost-effectiveness, with start spring 2024 and end of data collection in fall 2025. Recruited are 208 PwMS, ambulatory and non-ambulatory. Primary effect outcome is fall incidence. For process evaluation, interviews with a strategic sample of intervention PwMS and quantitative data from the program platform are used. For cost-effectiveness analysis, quantitative data is collected from program participants and national databases. Falls among PwMS are very common and associated with injuries, fear of falling, low health-related quality of life and high socioeconomic costs, due to the many injurious falls. There are very few self-management fall prevention programs
    only our has been developed using a co-design process with PwMS and healthcare professionals.
  • Swedish Research Council for Health Working Life and Welfare
    1 January 2024 - 31 December 2026
    Research problem and specific questionsFalls among people with multiple sclerosis (PwMS) are common and lead to fear of falling, injuries, impaired health and high societal costs. Fall prevention interventions should focus on development of self-management skills and include non-ambulatory PwMS. We have, in a co-design process, developed a digital group based self-management fall prevention program. The aim is to evaluate this program. Research questions: 1) Is the fall prevention program effective in reducing number of falls in PwMS at 6- and 12-months post-intervention? 2) What contextual factors, mechanisms of impact and implementation aspects can likely explain the effects of the intervention? 3) How do PwMS experience their fall prevention behaviours and strategies in daily life at 6- and 12-months post-intervention?Data and methodThe program is evaluated in a randomized control trial regarding effect and process by quantitative and qualitative methods, in line with recommendation for complex interventions. Recruited are 208 PwMS, ambulatory and non-ambulatory, who are randomised to intervention or control. Number of falls are monitored from allocation until 12-months post-intervention via SMS dispatches. Primary effect outcome is fall incidence. Secondary outcomes include fall prevention behaviours, fear of falling, fall-related self-efficacy, physical activity, participation in daily activities, and impact of MS on health. Semi-structured interviews with a strategic selection of intervention PwMS and quantitative data from the program platform are used for process evaluation.Societal relevance and utilizationThe program contributes to reduce inequalities in care and rehabilitation for PwMS as the digital format gives PwMS living in communities without specialized MS-centres the opportunity to participate. The program’s focus on development of self-management skills contributes to increase social participation in PwMS, and if number of falls are reduced to decrease costs for the individual and the society.Plan for project realizationThe project is carried out by our interdisciplinary research group with expertise in quantitative and qualitative methods and MS. A PhD student will be recruited. Four trained group leaders will deliver the intervention during year 2024. Data are collected before randomization and immediately after and 6- and 12-months post-intervention. Costs are associated with project personnel (PhD student and researchers).
  • Swedish Research Council for Health Working Life and Welfare
    1 November 2021 - 31 October 2024
  • Swedish Research Council
    1 January 2021 - 31 December 2023
  • Swedish Research Council for Health Working Life and Welfare
    1 January 2020 - 31 December 2022
  • Person-centred care transitions for people with complex health conditions: a co-design project
    The Kamprad Family Foundation for Entrepreneurship, Research & Charity
    1 September 2019 - 31 August 2022

Staff and contact

Group leader

All members of the group

Other people connected to the group

  • Rosenbek, Minet Lisbeth

Projects

Missing Link – Person-centred care transitions for persons who have had stroke: A co-design project

The overall aim is to develop, implement and evaluate person-centred care transitions between the stroke unit and the home for persons who have had stroke. The development is carried out in collaboration with persons who have had stroke, significant others, staff at stroke units and interdisciplinary home rehabilitation teams.

Missing Link

A self-management program to prevent falls in ambulatory and non-ambulatory community dwelling people with multiple sclerosis

The aim of this project is to develop and evaluate an innovative fall prevention program for ambulatory and non-ambulatory people with MS.

Falls and fall-related injuries are common among people with multiple sclerosis (MS) and can lead to fear of falling and a negative impact on the individual’s health. Research on fall preventive interventions among people with MS is limited. MS fall prevention research has overwhelmingly focused on ambulatory people with MS and has failed to address the needs of individuals only capable of walking a few steps or not at all. For all people with MS, evidence points to the need for interventions that address physical, behavioural, psychological and environmental risk factors, as well as the value of self-management strategies to support development and maintenance of healthy behaviours leading to reduced fall risk.

A self-management program to prevent falls in ambulatory and non-ambulatory community dwelling people with multiple sclerosis

Patient-reported experiences of daily life with disease-modifying therapy in multiple sclerosis (MS)

The aim of this study is to explore and describe patient-reported experiences of DMD in daily life in patients with MS.

For the purpose of decreasing progression of multiple sclerosis (MS), there are different disease-modifying drugs (DMD) registered, with various modes of administration (injections, oral therapies, infusions) and side-effect profiles. Clinical procedures for initiation and monitoring of the DMD differ nationally and internationally, though there are recommendations based on experience from the clinical trials and specific protocols for the various DMD. Development of evidence-based care for patients with MS requires knowledge about their experiences from living with disease-modifying drugs in daily life. A qualitative study is the first step within a larger research program aiming to increase understanding of patient-reported experiences of DMD in daily life.  

Patient-reported experiences of daily life with disease-modifying therapy in multiple sclerosis (MS)

High-intensity resistance training in PwMS experiencing fatigue - effects on functioning, wellbeing and inflammatory biological markers.

The aim of this study was to evaluate the effects of high-intensity resistance training on functioning, wellbeing/health-related quality of life and inflammatory biological markers in persons with MS-fatigue

Multiple sclerosis (MS) is chronic inflammatory neurodegenerative disease in the central nervous system. One of the most common and disabling symptom is fatigue. In persons with MS, fatigue is associated with activity limitations, participation restrictions and reduced health-related quality of life. MS-fatigue might be related directly to the disease, where increased levels of inflammatory biological markers (cytokines) contribute. Resistance training might have direct effects on the MS disease by modulating cytokine levels, where a higher training-intensity is thought to have a more profound effect. There are, however, a lack of high-quality studies on effects of high-intensity resistance training in persons with MS who suffer from MS-fatigue.

High-intensity resistance training in PwMS experiencing fatigue

Theses

Doctoral theses

Sebastian Lindblom, 2021: 

Mia Forslin, 2019:

Petter Sandstedt, 2018:

Charlotte Chruzander, 2014:

Susanne Palmcrantz, 2012:

Marie Kierkegaard, 2010:

Sverker Johansson, 2008:

Charlotte Ytterberg, 2008:

Anna-Karin Welmer, 2007:

Kristina Gottberg, 2006:

Anette Forsberg, 2006:

Ulrika Einarsson, 2006:

Disa Sommerfeld, 2004:

Lena von Koch, 2000:

Lotta Widén Holmqvist, 1997:

Licentiate theses

Elsy Eek, 2009: A procedure for quantitative assessment of touch function in hands and feet using Hf/TENS; reliability for patients with stroke and recommended normative values 

Annica Wohlin Wottrich, 2006:

Ann-Mari Thorsén, 2005:

Keywords:
Health Care Service and Management, Health Policy and Services and Health Economy Health Services Research Multiple Sclerosis Neurology Neurosciences Show all
Content reviewer:
Charlotte Ytterberg
Kathrin Dellblad
04-09-2025