Endocrine Abstracts

Background: Patients with pituitary tumour live with life-long consequences of their disease. The first year after pituitary surgery represents a time period of symptoms, fear of tumour recurrence, existential concerns as well as extensive medical evaluations and decisions about hormone replacement. To increase wellbeing, a person-centred care practice up to 1 year after pituitary surgery covering self-management support, accessibility and continuity has been implemented and are under current evaluation. One part of this practice an education programme for patients and their relatives has been implemented.

Aim: To evaluate an education programme within a person-centred practice for patients with pituitary tumours and their relatives.

Method: After pituitary surgery all patients at a specialist endocrine clinic are offered a one-time education programme six-nine months after surgery. The content was developed in collaboration with patients and an interdisciplinary pituitary team. Specific content comprise surgery, tumour recurrence, medical evaluation and treatment, symptom and signs, health and quality of life with information from neurosurgeons, endocrinologists and specialist endocrine nurses. The education includes discussions on common experiences and skills needed to manage different symptoms in daily life. After participation patients are asked to complete a questionnaire with structured and open response alternatives on the benefit of participation and what could be added to the programme.

Findings: During one year 39 patients were invited and 33 attended. Participants were 26 to 81 years and 1/3 brought a relative. Totally, 27 patients completed the evaluation (82% response rate). All responders reported that the education was meaningful. The peer-support and the medical information were rated equally important. Respondersreported that they felt comfortable in the group, but some thought should be more discussion among patients supported by physician and nurses. Some wanted more individual information from the other participants such as tumour type. The majority stated that they have gained new or more in-depth knowledge. Most participants thought the timing of the information after surgery and treatment was good. A few participants expressed a need to havethis type of information before surgery.

Conclusions: A pituitary tumour school can be a way to provide patients with more knowledge about their illness as well as an opportunity to exchange experiences. The time 6–9 months after the surgery was considered appropriate based on the participators evaluation.