Background: It is well established that patients with acromegaly have compromised quality of life both during active disease, as well as whilst on remission. (1). In the recent years, there has been increasing emphasis on the importance of considering health-related quality of life (QoL) outcomes in the care of patients with acromegaly. The University Hospitals Birmingham NHS Foundation Trust introduced and implemented the use of a holistic needs assessment (HNA) tool in the Pituitary Service in 2014.
Aims: To gain a better insight of the needs of patients with acromegaly, as reported by them in the HNA questionnaire.
Patients and Methods: A structured HNA, incorporating 11 indicators of psychosocial distress (issues concerning: original diagnosis and treatment; complications; hormone; heart problems; fertility; sexual; psychological; social/family; education/employment; healthy lifestyle, and spirituality/faith/belief) was offered to all patients with acromegaly on arrival at the Pituitary clinic prior to consultation with the health care professional. An audit of the responses was carried out over a 15-month period (May 2014 August 2015).
Results: A total of 92 patients (with active disease or in remission following various treatments) completed a HNA form. Of the 11 areas assessed, patients were most concerned about their hormone issues (50% of patients indicated that they are either worried/very worried/extremely worried), complications of their condition and treatment (42.39%), original diagnosis and treatment (40.21%), healthy lifestyle (40.21%), and heart problems (36.96%). Additionally, more than quarter (28.26%) of patients expressed concerns about their psychological well-being.
Conclusions: The use of the HNA tool has enabled us to structure and adapt our consultation to focus on what matters most to each individual patient. It is proving to be a very reliable tool in identifying patients needs as well as identifying the support that patients consider to be a priority.