Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jan 5, 2020
Date Accepted: Apr 14, 2020
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Extended support within a person-centred practice after surgery: protocol for a quasi- experimental study for patients with pituitary tumours
ABSTRACT
Background:
Patients with pituitary tumours often live with life-long consequences of their disease. 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.
Objective:
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.
Methods:
Within a quasi-experimental 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.
Results:
Inclusion into the control group was performed between Q3 2015 and Q4 2017. Inclusion in the intervention group is ongoing until Q1 2020. The study is conducted according to the Declaration of Helsinki and the protocol has received approval from a regional ethical review board.
Conclusions:
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. Clinical Trial: Researchweb.org. https://www.researchweb.org/is/sverige/project/161671
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Copyright
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