Peter Hagell

Research

I received my PhD in 2002 based on a thesis (pdf, 727 kB) on clinical and patient-reported effects and in vivo functioning of embryonic dopaminergic cells transplanted to the striatum of people with Parkinson's disease. In parallel, I also engaged in other studies concerning, for example, long-term effects of subcutaneous apomorphine therapy for Parkinson's disease, patient-reported outcome measurement and health economics. Taken together, my PhD project and other concurrent activities largely came to shape the direction of my post-doctoral scientific profile.
My current research is focused measurement and understanding of consequences of ill health and outcomes following various interventions from the perspective of the affected person, as well as from clinical and societal perspectives. This work primarily involves long-term neurological and other conditions, but also other areas. My research can be summarized into three related areas:

1. Development, evaluation and quality assurance of methods to assess and measure consequences of ill health and outcomes of interventions. The overall objective is to work towards metrologically sound person-centered approaches to assessment and measurement in clinical research and practice.

2. Methodological work related to the development, construction and application of rating scale and questionnaire based assessment and measurement methods. This includes, e.g., cross-cultural translation and adaptation, response category interpretation and functioning, the meaning and impact of various scoring methodologies, as well as epistemological and ethical issues related to health outcomes assessment and measurement.

3. Improved knowledge and understanding of various aspects of health and disease, and the relationships among such aspects, with an intention to contribute to the development of new and better preventive and therapeutic interventions.

Methodologically, this work is primarily quantitative with a focus on psychometrics and metrology, particularly Rasch Measurement Theory (RMT). However, since qualitative aspects are central to measurement, assessment and evaluation processes, I also use qualitative methods and mixed methods, particularly Group Concept Mapping (GCM), on their own as well as integrated in quantification processes.

"The trouble with measurement is its seeming simplicity" (unknown)

Projects

These are some examples of ongoing main project lines.

• Measuring health and quality of life in neurodegenerative disorders is a project line that aims to improve outcome measurement and assessment in neurodegenerative disorders in clinical practice and research through implementation of person-centered measurement. This involves conceptual mapping of variables, reassessment of existing outcome measures, and the development of new concept-driven instruments. Primary focus areas are body functions (symptoms and signs), activity performance, and quality of life. Within this project line is also NeuroMet2, an EU/EMPIR funded project aiming to develop enhanced tools for early diagnosis and stratification of persons with neurodegenerative disorders, primarily Alzheimer's disease.

• Measuring outpatient person-centered care from the patient perspective is a project where we develop a conceptual model for person-centered care in outpatient care for people with long-term conditions. The model is being operationalized into an instrument that so far has been tested regarding its conceptual and measurement properties as applied in nurse-led outpatient rheumatology clinics. Additional conceptual and measurement related work is ongoing.

• Patient education in Parkinson's disease – Person-centered care for improved life satisfaction studies the role of the specialized nurse and how patient education may promote self-management, the ability to manage everyday life and life satisfaction among people with Parkinson's disease and their caregivers, and how these persons experience the education.

• Non-motor symptoms in Parkinson's disease aims to improve the understanding of non-motor symptoms such as sleep disorders, involuntary weight change and fatigue in Parkinson's disease. This project line primarily involves studies regarding the associations between non-motor symptoms and motor symptoms, pharmacological therapies and various biomarkers, as well as the development of non-motor symptoms over time and their impact on daily life among people with Parkinson's disease.

Collaborations

Active national as well as international collaborations include representatives from academia/institutions (e.g., RI.SE, Linnaeus University, Vienna University, University of East Anglia), health care (e.g., Region Skåne, Karolinska University Hospital), industry (e.g., Pharmaceuticals Sales & Development Sweden AB, Nordic InfuCare AB, Galen Research Ltd., Concept Systems Inc., Modus Outcomes), as well as governmental (e.g., the Swedish National Board of Health and Welfare) and non-governmental organizations (e.g., the International Parkinson and Movement Disorder Society, Triskelion Norway, the Swedish Movement Disorder Caring Society).

Publications