The Gothenburg Pituitary Tumour Study (The GoPT-study)
Patients with pituitary tumours have life-long consequences of their disease due to the tumour impact on pituitary function, visual and cognitive function . Treatment options include surgery, radiotherapy and medical therapy. Patients need to adhere to long-term contact with health care providers, complex treatments and associated morbidity. The aim of the this study is to evaluate if person-centred care (PCC) increases wellbeing for these patients. Our main hypothesis is that PCC will result in increased psychological well-being compared with the support given within standard of care. Secondary objectives are to evaluate whether PCC will result in better health status, less fatigue, higher satisfaction with care, higher self-efficacy and increased person-centred content in care documentation compared with standard care.
This project is affiliated with GPCC.
Patients with pituitary tumours often live with life-long consequences of their disease as the tumour affects pituitary hormone function, may reduce visual and cognitive function. Treatment options include surgery, radiotherapy and medical therapy. Symptoms associated with the tumour and/or its treatment affects several areas of life. Patients need to adhere to long-term contact with health care providers covering both specialist and general health care due to the disease, complex treatments and associated morbidity. The first year after pituitary surgery constitutes an important time-period with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time is limited.
The aim of the study is to evaluate whether support within a person-centred care practice increases wellbeing for patients with pituitary tumours. Our main hypothesis is that the extended support will result in increased psychological well-being compared with the support given within standard of care.
Secondary objectives are to evaluate whether the extended support will result in:
1. better health status
2. less fatigue
3. higher satisfaction with care
4. higher self-efficacy
5. increased person-centred content in care documentation, and
6. sustained patient safety compared with standard care.
Within a quasiexperimental design, patients diagnosed with a pituitary tumour planned for neurosurgery are consecutively included in a pre-test/post-test study performed at a specialist endocrine clinic. A control group receives standard of care after surgery and the interventional group receives structured patient support for 1 year after surgery based on person-centredness covering self-management support, accessibility and continuity. A total of 90 patients are targeted for each group.
Inclusion into the control group was performed between 2015 and 2017. Inclusion in the intervention group started in 2017 and is ongoing until december 2021. The study is conducted according to the Declaration of Helsinki and the protocol has received approval from a regional ethical review board.
This study entails an extensive intervention constructed in collaboration between clinicians, patients and researchers which acknowledges accessibility, continuity and self-management support within person-centredness. The study has the potential to compare standard care to person-centred practice adapted specifically for patients with pituitary tumours and evaluated with a combination of patient-reported outcome and patient-reported experience measures. Following the results, the person-centred practice may also become a useful model to further develop and explore person-centred care for patients with other rare, life-long conditions.
Scientific articles from the project with links
Jakobsson, S., Olsson, D. S., Andersson, E., Hallén, T., Krabbe, D., Olofsson, A. C., ... & Ung, E. J. (2020). Extended Support Within a Person-Centered Practice After Surgery for Patients With Pituitary Tumors: Protocol for a Quasiexperimental Study. JMIR Research Protocols, 9(7), e17697.
Heckemann, B., Chaaya, M., Jakobsson Ung, E., Olsson, D. S., & Jakobsson, S. (2020). Finding the Person in Electronic Health Records. A Mixed-methods Analysis of Person-centered Content and Language. Health Communication, 1-7.
Ung, E. J., Olofsson, A. C., Björkman, I., Hallén, T., Olsson, D. S., Ragnarsson, O., ... & Johannsson, G. (2019). The pre-and postoperative illness trajectory in patients with pituitary tumours. Endocrine connections, 8(7), 878-886.
Sofie Jakobsson, Associate professor, RN 1
Daniel S. Olsson, Associate professor, MD 2,3
Eva Andersson, RN 2
Tobias Hallén, PhD, MD 4,5
David Krabbe, Doctoral student, licensed psychologist 6
Ann-Charlotte Olofsson, RN 2
Oskar Ragnarsson, Associate professor, MD 2,3
Thomas Skoglund, Associate professor, MD 4,5
Gudmundur Johannsson, Professor, MD 2,3
Eva Jakobsson Ung, Professor, RN 1,2,7
1Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden;
2Region Västra Götaland, Sahlgrenska University Hospital, Department of Medicine, Gothenburg, Sweden;
3Department of Internal Medicine and Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden;
4Region Västra Götaland, Sahlgrenska University Hospital, Department of Neurosurgery, Gothenburg, Sweden;
5Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden;
6Region Västra Götaland, Sahlgrenska University Hospital, Department of Neurology, Gothenburg, Sweden;
7Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden.