Neuroepidemiology and Health Services Research – Charlotte Ytterberg's research group

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

Research focus

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

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

Publications

Selected publications

Members and contact

Group leader

All members of the group

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

REARCH – Rehabilitation and architecture

Health services will change dramatically as the prevalence of home healthcare increases. Only technologically advanced acute care will be performed in hospitals. This change – along with the increased healthcare needs of people with long-term conditions such as stroke and the rising demand for services to be more person-centred – will place pressure on healthcare to consider quality across the continuum of care. Positive results indicate that planned discharge tailored to individual patient needs can reduce adverse events and promote competence in self-management. However, the environmental factors that may play a role in a patient’s recovery process – remain unexplored. Therefore, the aim of this project is to explore factors in the environment that can support or hinder a person-centred rehabilitation process in the home. Research on the associations among the environment, patients’ health and care processes, especially in rehabilitation care, is lacking. We have brought together a team of international experts in rehabilitation care and healthcare design to explore environmental factors and their interrelationship with outcomes (health, rehabilitation activities and person-centred care) for people with stroke during the post-stroke period at home. The study design is exploratory with an ethnographic approach, where a number of patients will be followed to their homes. Questionnaires, interviews and observations will be used for the data collection. In addition, we will investigate medical records, and in a co-design process with persons with stroke, significant others and healthcare personnel, identify important environmental factors to consider in the communication between inpatient and primary care providers. This to ensure the best possible at-home rehabilitation.

REARCH

A 10-year longitudinal population-based study of functioning, working capacity, health-related quality of life, patient satisfaction and use of health-care in people with multiple sclerosis

The overall aim in this project was to explore the occurrence of disability, health related quality
of life (HRQL), use of care and patient satisfaction with care, and to explore the importance of different variables to predict the occurrence of disability, HRQL and use of care in PwMS in a long-term longitudinal perspective.

A 10-year longitudinal population-based study

Rehabilitation processes after stroke - needs, interventions and outcomes

There is a lack of knowledge of the long-term impact on daily life in persons who have had a stroke and their significant others, as well as needs for rehabilitation and support in different phases of the rehabilitation process after stroke. There is also a lack of knowledge on how the long-term care and rehabilitation after stroke should be organised.

We have in different studies pursued projects with the aim to increase knowledge on needs for rehabilitation and support in people with stroke and their significant others, and if and how these needs vary over time.

Rehabilitation processes after stroke - needs, interventions and outcomes

Theses

Doctoral theses

Sebastian Lindblom, Understanding the links : the exploration of care transitions between hospital and continued rehabilitation in the home after stroke, 2021

Mia Forslin, Working life in people with multiple sclerosis, 2019

Petter Sandstedt, Disability and health-related quality of life in patients with amyotrophic lateral sclerosis, and caregiving experience from the perspective of next of kin, 2018

Charlotte Chruzander, A 10-year follow-up of people with multiple sclerosis-aspects of disability and health, use of and satisfaction with care, and feasibility of cognitive behavioural therapy, 2014

Susanne Palmcrantz, Long-term effects of stroke seen in young individuals living in the community, 2012

Marie Kierkegaard, Disability and Physical Exercise in adults with Myotonic Dystrophy type 1, 2010

Sverker Johansson, Disability in people with multiple sclerosis with focus on fatigue, 2008

Charlotte Ytterberg, A two-year study of people with multiple sclerosis - Aspects of disability, perceived impact, needs and satisfaction with care, 2008

Anna-Karin Welmer, Associations between body functions, activities and health-related quality of life from onset until 18 months after stroke, 2007

Kristina Gottberg, Studies of people living with multiple sclerosis in Stockholm county: evaluation of methods for data collection and aspects of functioning and use of health care services, 2006

Anette Forsberg, Guillain-Barré syndrome: disability, quality of life, illness experiences and use of healthcare, 2006

Ulrika Einarsson, People with multiple sclerosis in Stockholm: Aspects of motor and cognitive function, activities of daily living and social/lifestyle activities, 2006

Disa Sommerfeld, Body function and activity after acute stroke: Physiotherapy perspectives, 2004

Lena von Koch, Early supported hospital discharge and continued rehabilitation at home after stroke, 2000

Lotta Widén Holmqvist, Development and evaluation of rehabilitation at home after stroke in south-west Stockholm, 1997

Licentiate theses

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

Annica Wohlin Wottrich, On aspects of context in rehabilitation after stroke : views of patients and therapeutists, 2006

Ann-Mari Thorsén, Five-year follow-up of a randomized controlled trial of early supported discharge and continued rehabilitation at home after stroke, 2005