Swedish PROMs Research Programme
In a recent agreement between the EuroQol Research Foundation and the Quality Register Center QRC Stockholm, in Stockholm County Council, a Swedish nation-wide Patient-reported outcomes measures (PROMs) Programme has been established. The research group has been assigned to develop a five-year research and development programme, the PROMs Research Programme, to strengthen methodological development and application of PROMs among adults and children, specifically health-related quality of life measured with EQ-5D. Kristina Burström is appointed as Principal Investigator of the Swedish PROMs Research Programme 2015-2020.
Experience-based values for EQ-5D health states
Investigating experience-based values for EQ-5D health states is central for the research group. The first Swedish value sets for EQ-5D-3L health states using both the TTO and VAS methods using data from population health surveys (45,000 observations) have been established. Testing the performance of the value sets by assessing how the predicted values correspond to directly measured values in other populations, e.g. disease groups, is of importance. We have completed the first assessment in a total hip replacement population using the Swedish Hip Arthroplasty Quality Register. This work, and values for EQ-5D-5L, will be expanded and continued within the PROMs Research Programme.
HRQoL and values for health states among youths
EQ-5D-Y is a version of the EQ-5D for children and adolescents and has three levels of severity (EQ-5D-3L-Y). An international project aiming to investigate extension of the severity levels (the EQ-5D-xL-Y study) by carrying out individual and focus groups interviews with youths is ongoing in Sweden, Germany, UK and Spain. HRQoL measured by the EQ-5D-3L in the general population and in specific disease groups will be carried out.
Mapping the condition-specific health-related quality of life instrument MSIS-29 to EQ-5D
Mapping can be performed to predict utility values from condition-specific measures when preference-based measures are absent. The aim of this study is to increase knowledge on the relationship between the condition-specific instrument MSIS-29 and the EQ-5D. Data was obtained from the Swedish Multiple Sclerosis register (SMSreg) and the nationwide IMAS database (Insurance Medicine all Sweden).
Interventions to disadvantaged groups
In an attempt to strengthen parents in their new role as custodians and increase social participation, a pilot study with expanded home visiting by child health services and social services among first-time parents in a disadvantaged area is implemented, in collaboration between Rinkeby child health care and Rinkeby-Kista social services.
Inequalities in HRQoL
Studies are performed on inequalities in the determinants of health, HRQoL and QALYs in studies on health, living conditions and living habits in disadvantaged groups and areas.
Treatment strategies on patients with chronic non-specific low back pain
A pragmatic multicentre randomised controlled trial to examine costs and effectiveness of manipulation and spine exercise compared to pharmaceutical treatment strategies on patients with chronic non-specific low back pain.
Equity aspects of patient choice in primary care in Stockholm County
A research funded project (FORTE) that focuses on equity aspects of patient choice in primary care in Stockholm County Council. The impact of on need-based resource allocation, primary care doctors and health care utilization in disadvantaged areas will be investigated, using a mixed method approach with both qualitative and quantitative methods. The study is linked to ongoing improvement of care in public primary care units in Stockholm County Council. The study will benefit from collaboration with British colleagues in the team and comparison with the development in United Kingdom.
Identification of risk factors in potential patients for spine surgery
A pilot project at Stockholm Spine Center in collaboration with medical pain specialists and psychologists aims to identify risk factors in potential patients for spine surgery. Previous studies have shown that presence of other diagnosis for example anxiety and depression might give poorer outcome after surgery.
Health economic evaluation projects
Members in the research group participate in several projects on health care interventions, health-related quality of life and/or economic evaluation in different disease groups, for example asthma in children and adults, osteoporosis, total hip arthroplasty, heart diseases, Duchenne muscular dystrophy, and haemophilia. A specific research project aims at developing methods for conducting evaluations based on real-world data, testing and developing new methods for evaluating the effectiveness and cost-effectiveness of drugs in clinical practice. Another study investigates the costs and health outcomes, QALYs, of the Quit Smoking Help Line, a Swedish nationwide telephone helpline for smoking cessation.
SoPP – Prevention program
SoPP – Long-term follow-up of a prevention program directed at individuals and the population of Sollentuna, a retrospective register based study.
Ongoing evaluation of the national initiative to enhance the use of National Quality Registries
MMC is coordinating the ongoing evaluation of the national initiative to enhance the use of the national quality registries 2012-2017. By describing and analysing the initiative, MMC will provide knowledge that will support the future investments in improving and enhancing the use of the national quality registries in accordance with the intentions in the agreement.
Using National Quality Registries to improve care of older people
The purpose of the project is to investigate how the quality registries in elderly care in Sweden are used to improve work approaches aiming for development and improvement of the older peoples’ situation. Furthermore, the project studies how quality registry work affects staffs’ work situation and the quality of care. The objective is to provide knowledge on how quality registry work relates to quality assurance processes and features of the staff’s work situation in elderly care.
A programme, INNOVCare, to develop and implement a new social care pathway for patients with orphan diseases has received funding from the EU DG Employment, social affairs and inclusion. The programme is coordinated by the Ministry of Health in Spain and involves eight partners across Europe. KI is responsible for the economic evaluation of the new pathway.
Continued collaboration with Nanjing Medical University (NMU)
By introducing the EQ-5D instrument into the National Health Services Survey 2008 in China, health status for the whole Chinese population has been measured, a Chinese VAS value set has been established, which can compensate the scarcity of this kind of studies and also provides a base-line for future studies that has been carried out recently.
The continued collaboration aims to build upon and expand on existing collaboration between Centre for Health Policy Studies, where professor Chen Jiaying is director, consisting of researchers from School of Health Policy and Management and School of Public Health, NMU, and the Health Outcomes and Economic Evaluation Research Group and the Equity and Health Policy Research Group at the Department of Public Health Sciences, KI. Kristina Burström, who is Visiting Professor at NMU, leads the collaboration project. Members of the KI research groups visited NMU in October 2014 and November 2015. The framework of the continued collaboration have three constituent parts: joint research projects between researchers at NMU and KI, research capacity building, through exchange of young teachers (PhD students, post-docs) and senior researchers and training for Master of Public Health degree at NMU and KI. The overall purpose of the research projects is to increase knowledge of the effects on equity, efficiency and quality of care of the ongoing Chinese health care reform, especially in Jiangsu province. Specific areas of research are to explore the validity of using patient-reported outcomes measures (PROMs) and patient-reported experiences measures (PREMs) in the evaluation of the public hospital reform, to evaluate the implementation of vertical integration and coordination between primary health care and higher levels of care among rural patients with chronic diseases and to analyse trends in health and health care utilisation over time. The collaboration is based on ongoing research project financed by National Natural Science Foundation of China led by Professor Chen Jiaying and Professor Qian Dongfu. Furthermore, we have a collaboration with Professor Wang Jianming from the School of Public Health. Zhou Lang has recently visited the Heatlh Outcomes and Economic Evaluation Research Group as a visiting PhD student with Chen Jiaying and Kristina Burström as supervisors.
Chen Shaofan and Wang Xuanxuan has been awarded scholarships from the Chinese Scholarship Council for PhD studies and postdoc visit, respectively. Chen Shaofan has been awarded a PhD scholarship for four years with Vibeke Sparring, Bo Burström and Qian Dongfu as supervisors. Wang Xuanxuan a postdoc scholarship for one year with Kristina Burström as supervisor. Zhong Yanqin (former master student of NMU) has been awarded a postdoc scholarship from Nantong University to visit Karolinska Institutet for six months with Kristina Burström as supervisor.