Better health for people with rare endocrine disorders: promoting patient engagement in regular screening

People with rare genetic endocrine disorders can develop diverse and unpredictable new tumour formation. Lack of engagement in screening for tumours can lead to significant negative impacts on health for the individual and more significant demands on health services in the long term. The aim of the proposed research is to understand how patients’ decision-making may be better supported to enhance engagement in regular screening services. A mixed methods design will include surveying quantitative aspects of patient and/or service delivery. The qualitative components are likely to be founded on a small expert patient group (n8) who will be invited to share their experience and knowledge, attitudes and beliefs about regular screening for endocrine tumours. Expert patients will be supported to scope, develop, publish and trial an information booklet and online resource. Outcomes: accounts of patient’s lived experience; patient-led development of an information booklet and online resource to enhance patient decision making.

People

	Name	Telephone	Email	Office
	Priscilla Harries (Principal investigator) E: priscilla.harries@brunel.ac.uk		priscilla.harries@brunel.ac.uk