What are PROMs?
Positive Outcomes is a 23-question Patient-Reported Outcome Measure (PROM) designed to help your HIV care team understand concerns that may affect your day-to-day life. These can include topics like your physical health, emotional wellbeing, sleep, energy and relationships.
The HIV PROM was developed by the British HIV Association working with people living with HIV and researchers at King’s College London.
People with HIV experience more problems than the general population with mental health, social and spiritual matters, physical symptoms, and poorer health-related quality of life. They can often feel that routine clinical appointments do not address some of the things that really matter to them. This in turn has an impact on how people engage with treatment and care.
Positive Outcomes is now being used in three NHS sites across the UK: University Hospitals Sussex in Brighton, King’s College Hospital in South London, and Chelsea & Westminster Hospital in West London.
How does it work?
When you arrive for your appointment, the receptionist will hand you a short paper form to fill in while you wait. At the beginning of the form, there’s a space for you to write down any concerns or issues you’d like your clinician to discuss, so nothing gets forgotten or left unsaid.
Once you’ve filled it in, you hand it to your doctor at the start of your appointment. They’ll use it to guide the conversation, making sure the things that matter most to you are front and centre. After the appointment, the form is kept and added to your medical notes, so it becomes part of your ongoing care record.
How does it affect routine appointments?
Positive Outcomes is part of our commitment to truly patient-centred care. It allows you to shape your appointments around your most pressing needs – you decide what gets discussed, so nothing important slips through the cracks. It takes the pressure off you having to remember everything you want to discuss with your clinician when you walk into the appointment.
Completing the tool before your visit also allows your clinician to see what the most important and urgent concerns are. They are then able to let you know about some of the resources available to support you, so that you can come up with a plan together.
Completing the PROM at every appointment also allows you and your clinician to measure and track your concerns over time and perhaps try a different approach if the same issue persists.
What does it look like?
Positive Outcomes is a three-page paper questionnaire containing 23 questions about your health and wellbeing. It includes space for you to write down up to three concerns you’d like to discuss with your clinician.
The questions cover different aspects of your life, including physical and emotional health, sleep, relationships, housing, finances and sexual wellbeing.
Most questions ask you to think about your experiences over the past four weeks and tick one of five boxes to show how you’ve been feeling or how much something has affected you.
Frequently asked questions (FAQs) about PROMs
Do I have to complete the questionnaire?
No, completing the questionnaire is optional. You can also choose not to answer any questions you don’t feel comfortable answering.
Who will see my answers?
Your completed questionnaire will be available to your HIV doctor or HIV nurse. It will be added to your medical notes and treated with the same confidentiality as your other medical information.
Can I get help completing the questionnaire?
Yes. You can ask a receptionist, nurse or doctor to help you complete it.
The questionnaire will also be available in Spanish and Portuguese, with more translations planned.
How long does it take to complete?
The questionnaire takes less than five minutes to complete.
What happens if something important comes up that can’t be addressed during the appointment?
You can discuss this with your doctor, and the team will work with you to agree a plan for addressing your concerns.