The Gothenburg Pituitary Tumour Study (The GoPT-study)
Short description
Persons with pituitary tumours can suffer consequences of the disease due to the loss of one or more pituitary hormones and due to eventual impact of the tumor on nearby brain structures. Fatigue, memory and concentration difficulties, sleep problems and sexual health problems are symptoms that patients may experience, along with obesity and high blood pressure. Patients may require prolonged contact with health care and undergo complex treatments. The goal of GoPT-study is to improve care, optimize hormone replacement therapy, and empower the patient. The aim is to evaluate whether person-centred care increases patients well-being. We also believe that the person-centred care will lead to improved health, less fatigue, higher satisfaction with the care and higher confidence in own ability to manage and live with the disease.
This project is affiliated with GPCC.
Background
Patients with pituitary tumors can face lifelong consequences of their disease. Treatment includes surgery, radiotherapy and medical therapy. Symptoms resulting from the tumor and/or its treatment affect several factors such as cognitive function, vision and hormone production. Patients may have to adjust to long-term contact with health care providers that include both specialist and primary care, complex treatments and sequelae. The first year after pituitary surgery is a particular critical period for patients which may include multiple medical evaluations and decisions about hormone replacement therapy.
Aim
The aim of the project is to evaluate whether person-centred care increases well-being for patients with pituitary tumors. Our main hypothesis is that the person-centred care will result in increased well-being compared to standard care.
Projects
In a recently initiated randomized controlled trial, we intend to evaluate whether person-centred physical activity can increase quality of life and cardiorespiratory fitness in patients who have undergone surgical treatment for non-functioning pituitary adenomas. Furthermore, whether physical activity leads to reduced fatigue, increased confidence in own ability to manage and live with the disease and reduced cardiovascular risk profile. The intervention means that patients receive, in addition to standard care, person-centred advice and support for physical activity from a physiotherapist and nurse for 3 months. Inclusion of patients in the study is ongoing since February 2024.
Another study with a quasi-experimental design includes patients with different types of pituitary tumors who have underwent neurosurgery. A control group received standard care after surgery and a intervention group received person-centred care for one year after surgery, which included increased self-care support and increased availability and continuity of the care team. The study's hypothesis is that person-centred support provides better psychological well-being and can lead to reduced fatigue, better perceived health, higher confidence in own ability and lead to higher satisfaction with the care compared to standard care. A total of 86 and 100 patients are included in each group. Data collection in the study is completed and data analysis is ongoing.
Study potential
The development of the person-centred interventions is a collaboration between clinicians, patients and researchers. The project has the potential to compare standard care with person-centred care specifically for patients with pituitary tumors. This is evaluated in a combination of patient-reported outcome measures, objective signs of improved health and patient-reported experiences. The person-centred care models have the potential to further develop care also for other patients with rare and lifelong conditions. All studies are conducted according to the Declaration of Helsinki and have received approval from an ethical review board.
Scientific articles from the project
Jakobsson, S., Ragnarsson, O., Hallén, T., Krabbe, D., Olofsson, A. C., Olsson, D. S., Trimpou, P., Skoglund, T., & Johannsson, G. (2025). Person-centered support for patients with a pituitary tumor following surgery. Endocrine Connections, 14(3).
Hantelius V, Ragnarsson O, Johannsson G, Olsson D, Jakobsson S, Thurin E, Skoglund T, Hallen T. (2024). Headache in patients with non-functioning pituitary adenoma before and after transsphenoidal surgery- a prospective study. Pituitary. 27:635-643
Andersson A, Hallén T, Olsson DS, Farahmand D, Olofsson AC, Jakobsson Ung E, Jakobsson S, Bergquist H, Johannsson G, Ragnarsson O, Skoglund T. (2021). Headache Before and After Endoscopic Transsphenoidal Pituitary Tumor Surgery: A Prospective Study. Journal of Neurological Surgery Part B: Skull Base, 83, e360-e366.
Hallén, T., Olsson, D. S., Farahmand, D., Esposito, D., Olofsson, A. C., Jakobsson, S., ... & Bergquist, H. (2021). Sinonasal Symptoms and Self-Reported Health before and after Endoscopic Pituitary Surgery—A Prospective Study. Journal of Neurological Surgery Part B: Skull Base, 83, e160-e168.
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.
Heckemann, B., Graf, T., Ung, E. J., Jakobsson, S., Ragnarsson, O., Olsson, D. S., & Blomdahl, C. (2023). The importance of personal documentation for patients living with long‐term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study. Health Expectations, 26(1), 226–236.
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.
Melin, J., Fors, A., Jakobsson, S., Krabbe, D., & Björkman, I. (2023). Self-Efficacy to Manage Chronic Disease (SEMCD) scale: translation and evaluation of measurement properties for a Swedish version. Archives of Public Health, 81(1), 1–12.
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.
Researchers
Tobias Hallén, Filosofie doktor, legitimerad läkare1,2
Victor Hantelius, Doktorand, legitimerad läkare3,4
Sofie Jakobsson, Docent, legitimerad sjuksköterska5,6
Gudmundur Johannsson, Professor, legitimerad läkare3,4
David Krabbe, Doktorand, legitimerad psykolog7
Ann-Charlotte Olofsson, Legitimerad sjuksköterska3
Daniel S. Olsson, Docent, legitimerad läkare3,4
Jenny Pfolz, Legitimerad sjuksköterska3
Oskar Ragnarsson, Docent, legitimerad läkare3,4
Anna Sandberg, Post dok, legitimerad fysioterapeut8,9
Thomas Skoglund, Docent, legitimerad läkare1,2
Emma Gabrielsson
Tidigare forskare:
Eva Jakobsson Ung, Professor, legitimerad sjuksköterska3,5,10
Eva Margareta Andersson
Affiliations
1 Sahlgrenska universitetssjukhuset, Sektionen för neurokirurgi, Göteborg, Sverige
2 Institutionen för neurovetenskap och fysiologi, Sahlgrenska akademin, Göteborgs universitet, Göteborg, Sverige
3 Sahlgrenska universitetssjukhuset, Specialistmedicin, Göteborg, Sverige
4 Avdelningen för internmedicin och klinisk nutrition, Institutionen för medicin, Sahlgrenska akademin, Göteborgs universitet, Sverige
5 Institutionen för vårdvetenskap och hälsa, Sahlgrenska akademin, Göteborgs universitet, Sverige
6 Sahlgrenska universitetssjukhuset, Verksamhet Onkologi, Göteborg, Sverige
7 Sahlgrenska universitetssjukhuset, Neurologiska sektionen, Göteborg, Sverige
8Avdelningen för molekylär och klinisk medicin, Institutionen för medicin, Sahlgrenska akademin, Göteborgs universitet, Sverige
9 Sahlgrenska universitetssjukhuset, avdelningen för fysioterapi, Göteborg, Sverige
10 Centrum för personcentrerad vård vid Göteborgs universitet (GPCC), Göteborg, Sverige.