What are PROMs?

PROMs are Patient-Reported Outcome Measures

They are validated questionnaires that patients may be asked to complete before and after they have some procedure done in a healthcare organisation. The questionnaires are usually designed to be easily filled in, with a number of tick boxes so that responses can be counted or scored in some way. They may just offer a total score or a number of subtotals in different areas of one’s health such as sleep, pain, energy, physical functioning, social functioning, etc.

Some PROMs have been around for a long time (1960s onwards) but have mostly been used in discrete projects for research or evaluation before. A large number of different PROMs now exist. Some are known as generic measures because they can be completed by anyone and allow for comparisons across a wide range of different types of patients. They have been used in large scale population studies as well as small scale research projects. Some of them are so-called ‘health-related quality of life measures’. Examples are the SF-36 Short Form 36), EQ5D, Nottingham Health Profile and HowRU. Others are disease-specific and have questions that relate to a particular illness or health condition, such as:

• Diabetes (e.g. Diabetes health Profile)
• Cancer (e.g. EORTC QLQC30 European Organisation for Research and Treatment of Cancer, 30 core quality of life questions with add-ons for different types of cancer)
• Mental health (e.g. the CORE10, the Beck Depression Inventory)
• Parkinson’s Disease (e.g. PDQ39 Parkinson’s Disease Quality of Life)
• Eye conditions (VF-14, Visual Function 14 questions)
• Cardiovascular disease (e.g. MILQ Multidimensional Index of Quality of Life)
• Gastrointestinal disease (e.g. IBDQ Quality of Life in Inflammatory Bowel Disease)
• Renal disease (e.g. RQLP the Renal Quality of Life Profile)
• Respiratory disease (e.g. Living with Asthma Questionnaire)
• Skin diseases (e.g. DLQI Dermatology Life Quality Index)
• Varicose veins (the Aberdeen Varicose Vein Questionnaire)
• Orthopaedics (e.g. Oxford Hip Score, Oxford Knee Score)
• Arthritis (e.g. AIMS2 – Arthritis Impact Measurement Scale)
• Disability (e.g. the London Handicap Scale)

There are also specific measures for use with children and the elderly.

Why are they important?

PROMs allow clinicians to tell how successful their intervention has been from the patients’ perspective by comparing the before and after scores. This will enable clinicians to monitor individual patients, to tell how well they are doing themselves and compare their results with other similar clinicians. The results may feed into research on what is the best treatment for a condition. The Government is now proposing to use PROMs routinely, initially in four areas of hospital care, which generate a high volume of work: hip and knee replacement surgery (EQ5D and Oxford Hip & Knee Scores), varicose veins (EQ5D and Aberdeen Varicose Vein Score) and hernias (EQ5D only). The Use of PROMs in other specialties will not be compulsory but clinicians working in these areas may also opt to choose suitable PROMs to measure and monitor clinical outcomes from the patients’ perspective.

The need for measuring patient outcomes has been highlighted in a recent report: ‘High Quality Care for All – NHS Next Stage Review Final Report’, 30 June 2008 by Professor Lord Darzi. In this report he says “Effectiveness of care – this means understanding success rates for different treatments for different conditions. Assessing this will include clinical measures, such as mortality and survival rates, complication rates and measures of clinical improvement. Just as important is the effectiveness of care from the patient’s own perspective which will be measured through patient-reported outcome measures (PROMs)”.

What CFEP can offer your organisation

• Consultation service
  We will be able to advise on appropriate PROMs for different health conditions, where to obtain the questionnaire and any copyright issues involved. Consideration will also need to be given to how the data are collected and scored.
• Survey and Analysis service
  CFEP will be able to organise the distribution and collection of PROMs for your evaluation requirements. Some PROMs can be delivered by means other than pen and paper, such as by telephone, web browser, touch screen computers and mobile phone.