1. The most important results:
Patient-reported outcomes
Evalill Nilsson, MD, PhD
County Council of Östergötland
evalill.nilsson@lio.se

2. What is PROM?
• Patient-reported outcome measures (often
questionnaires)
– Disease symptoms
– Functional ability
– Patient satisfaction
– Health-related quality of life, HRQoL
• Generic (e.g. SF-36, EQ-5D)
• Disease specific (e.g. SHS; 4 items: symptoms, function, worry, general
wellbeing)

3. Outcome measures in Swedish
National Quality Registries (PROM bold type)
• Survival
• Complications
• (Wound) Healing
• Symptoms (profession-reported)
• Symptoms (patient-reported)
• Functional ability
• Health-Related Quality of Life, HRQoL (generic & disease
specific measures)
• Patient satisfaction

5. Why use PROM?
• Identifying and prioritising problems
• Facilitating communication
• Screening för hidden problems
• Facilitating shared clinical decision-making
• Monitoring changes or responses to treatments
• Choosing between different treatments (clinical trials)
• Health economics

6. PROM make sense, but do the they
make a difference?
• Researchers have been more interested in creating new
questionnaires than in the theory behind why PROM should
be suitable for the improvement of health care
• Feedback Intervention Theory (FIT)
– Health care professionals become more focused on the target (better
health for their patients) when given new, earlier unknown data about
their patients

7. Evidence for improved health/health care
• Relations and communication between patients and
health care professionals are improved
– The most important issues are directly addressed
– Showing an interest
• Less evidence for improved health (so far)
– Lower incidence of pain and depression (earlier detection?)
– Discovering unknown symptoms in a patient group
– Patients feel empowered (self-awarness)

8. Analysing the results
• Consider the variation; comparing the before-and-
after mean values may falsely show no differences
(Pareto etc)
• Significantly different may not = clinically different
(MCID etc)
• Sub group and casemix analyses are often
necessary, especially regarding general HRQoL
– Disease activity, comorbidity, sex, age, SES, social support,
coping ability etc

9. References and websites
• Visit promcenter.se
• A list of references will be included with the
ppp
• Questions? Send me an email!

10. References and websites
• Visit promcenter.se
• A list of references will be included with the
ppp
• Questions? Send me an email!