Endocrine Abstracts

Background: Patient experience is a crucial part of patient care, but is not systematically assessed. In light of this we performed a UK-wide survey to understand the care experiences of patients with pituitary conditions over the preceding three years.

Methods: In collaboration with patients and pituitary experts a web-based survey was designed, aimed at patients 18yrs and over. Specific topics included: assessment of information provision, communication between health care professionals, effectiveness of emergency care protocols for adrenal insufficiency (AI) and overall management of Arginine Vasopressin Deficiency - AVP-D (cranial diabetes insipidus) Participants answered each question rating from ‘poor’ to ‘excellent’ on a five-point scale, with free text comments. The survey was available electronically between August and December 2021.

Results: A total of 982 patients, all with confirmed pituitary diagnosis, (70.93% female) completed survey forms, 700 provided free text comments. For those with AI or AVP-D, experiencing an in hospital or A&E episode, 72.47% were not confident staff understood or managed their condition properly. Those with AVP-D, 75.61% couldn’t recall being given information at diagnosis about desmopressin, or the risk of changes in serum sodium. Only 63% of patients with AI were given information about sick day rules at diagnosis. 68.84% said their experience of care was worse since pandemic. Free text comments reported support from endocrine teams to be inadequate, with quality of care ranging from: poor 16.50% to excellent 29.74%.

Conclusions: Care for patients with pituitary disease is highly variable in the UK. These data mandate an urgent need for improvements in care of patients with pituitary disease by three main steps: 1) increasing awareness and education of pituitary conditions for patients and health care professionals; 2) improving communication between health care professionals and patients; 3) signposting support available from the Pituitary Foundation.