Developing patient reported outcome measures for HIV

South LondonGeneric Health Relevance
Start Date: 1 May 2016 End Date: 31 Jan 2018

CLAHRC South London has adopted a study which will develop the first ‘validated’ PROM  for adults living with HIV. Firstly, researchers at King’s College London will carry out interviews with key stakeholders (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: recruiting people with a breadth of characteristics in terms of: age; gender; treatment status; ethnicity; sexual orientation; relationship status; and illness stability; presence of complex comorbidities; and years since diagnosis
  • Up to 20 HIV healthcare professionals: recruiting medical, nursing, social work, pharmacy, and mental health professionals from London and Brighton and Dublin
  • Up to 15 HIV commissioners: recruiting from different locality teams in London, and other regional areas.

This will allow the researchers to develop a PROM which measures all aspects of the disease and treatment most important from a patient, healthcare professional and commissioner perspective. They will then use the data from these interviews to develop a pool of potential items, which will inform the draft PROM.

The research team will carry out up to 12 cognitive interviews with people living with HIV.  Cognitive interviewing involves a process of verbal probing around a PROM in terms of the content and structure, and asking people to ‘think aloud’ about how they would respond to questions.  This will ensure that the PROM that is developed is acceptable and accessible in format and structure.


Professor Richard Harding