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Patient involvement in patient-reported outcome measure development: the developers’ perspective.

Wiering, B.M., Boer, D. de, Delnoij, D. Patient involvement in patient-reported outcome measure development: the developers’ perspective. European Journal of Public Health: 2015, 25(spl. 3) 291. Abstract: 8th European Public Health Conference: "Health in Europe - from global to local policies, methods and practices". 14-17 oktober 2015 in Milan.
Background
Patient-reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To really capture the patient’s perspective, patient involvement in PROM development is essential. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients and what the costs and benefits of patient involvement are.

Methods
PROM developers who, according to an earlier scoping review, involved patients in several phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded and transcribed. The transcripts were sent to the developers for approval.

Preliminary results
41 PROM developers who involved patients were contacted. Currently 12 interviews have taken place and 6 additional developers have agreed to an interview. PROM developers perceive patient involvement as necessary to create a valid questionnaire. Most developers do not actively consider which methods should be used to involve patients, but rely on personal experiences or guidelines set by PROMIS or the Food and Drug Administration. Negative aspects of patient involvement were time investment, logistical problems and patients taking over interviews or focus groups. Despite these negative aspects, developers highly recommend patient involvement. To give more insight into the reasons for not involving patients, 16 PROM developers who did not involve patients will be contacted shortly.

Discussion
Although PROM developers agree that patient involvement is necessary, most do not actively consider pros and cons of different methods that can be used to involve patients. Although guidelines for PROM development may be a good start, to optimize patient involvement developers should not simply follow guidelines but should explicitly think about which methods would suit their study.

Key messages
Even though patient involvement may have some negative consequences, PROM developers highly recommend involving patients in PROM development. To optimize patient involvement in PROM development, PROM developers should actively consider which methods should be used and further build and improve upon the guidelines for patient involvement.