Mixed methods co-design and evaluation of a decision support tool to enable shared decision making for people who are considering cascade screening for thoracic aortic disease: the DECIDE-TAD Programme. Acceptability Testing Work Package 1.4
Thoracic aortic disease
For this component of the NIHR programme – Acceptability Testing – we will conduct qualitative interviews with TAD patients and their first and second-degree relatives as well as Health Care Professionals (Aortic Specialist Nurses, Inherited Cardiac Conditions (ICC) Specialist Nurses or other clinical staff involved in shared decision making). First, we will conduct between 15-36 qualitative interviews with patients and relatives over three rounds of interviews. After each round of interviews, researchers will analyse the interviews, refine the DST based on the participant feedback, and then conduct further interviews with the refined DST. After three rounds of interviews with patients and relatives and refinement of the DST, a questionnaire will be developed based on interview findings to ascertain how acceptable and useable the DST would be to participants. Further TAD patients and their relatives (n = 20-25) will be recruited to complete the questionnaire. Following patient and relative interviews and the survey, and analysis of the results, researchers will conduct qualitative interviews with health care professionals (n = 8-10) to find out how useable and acceptable the DST is for healthcare professionals to support shared decision making and what training would be required to support delivery.
1. People with a diagnosis of NS-TAD where this is defined as: 1.1. People with Acute Type A dissection, treated or untreated 1.2. People who have undergone non-emergency treatment (surgical or endovascular) for NS-TAD. This means anyone with NS-TAD who has had treatment at a UK cardiac surgery centre Or first- or second-degree relative of a patient with TAD Or healthcare professional involved in shared decision making consultations regarding screening for TAD 2. Aged 16 years and above 3. Diagnosed in the last 24 months from start date of this study when recruiting from Trusts (relevant for the patient with TAD) 4. Ability to understand the languages in which the information is available (Acceptability questionnaire study only) 5. Willingness to provide informed consent
1. Previous diagnosis of syndromic TAD (relevant for the patient with TAD) 2. Inability to understand English written and spoken language (Acceptability questionnaire study only)