Positive Outcomes
Research type
Research Study
Full title
Positive Outcomes: a UK PROM for people living with HIV - development, face and content validity
IRAS ID
209800
Contact name
Richard Harding
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
Research has found that people living with HIV can experience a range of problems and concerns that may matter to them in their treatment and care. Careful management of these issues is central to helping people to live well alongside their HIV, as well as maintaining clinic attendance and treatment adherence. HIV healthcare professionals sometimes miss problems and concerns of people living with HIV, if they are not raised by the person themselves. Patient Reported Outcome Measures (PROMs - tools or lists of common problems or concerns) can help to improve care delivery, and ensure it is shaped around individual needs. However, no validated PROM currently exists for adults living with HIV.
This study will develop the first validated PROM for adults living with HIV. Firstly we will carry out interviews with key stakeholder (people living with HIV, HIV healthcare professionals, and HIV commissioners) to understand what matters most to people living with HIV in the UK. This will involve interviewing up to 30 people living with HIV, 20 HIV healthcare professionals (medical, nursing, social work, pharmacy, mental health) and up to 15 HIV Commissioners. This will allow us to develop a PROM which has face and content validity (to ensure it measures all aspects of the disease and treatment most important from a patient, healthcare professional and commissioner perspective). We will use the data from these interviews to develop a pool of potential items, which will inform the draft tool. We will then undertake up to 12 cognitive interviews with people living with HIV to ensure: the tool we have developed is acceptable and accessible in format and structure; to understand how responses to questions are formulated, and whether any key concepts are missing. This process of cognitive interviewing will enhance the face and content validity of the tool.
REC name
London - London Bridge Research Ethics Committee
REC reference
16/LO/1453
Date of REC Opinion
19 Sep 2016
REC opinion
Further Information Favourable Opinion