Development of a standard set of PROs and generic PROMs for Dutch medical specialist care: Recommendations from the Outcome-Based Healthcare Program Working Group Generic PROMs

Martijn Oude Voshaar, Caroline B. Terwee, Lotte Haverman, Bas van der Kolk, Marleen Harkes, Christiaan S. van Woerden, Fenna van Breda, Stephanie Breukink, Irma de Hoop, Hester Vermeulen, Evelien de Graaf, Jan Hazelet, Barbara van Leiden, Jozette Stienen, Marian Hoekstra, Hans Bart, Hester van Bommel, Domino Determann, Mariët Verburg, Philip van der WeesAnna J. Beurskens

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)


Purpose: The added value of measuring patient-reported outcomes (PROs) for delivering patient-centered care and assessment of healthcare quality is increasingly evident. However, healthcare system wide data collection initiatives are hampered by the proliferation of patient-reported outcome measures (PROMs) and conflicting data collection standards. As part of a national initiative of the Dutch Ministry of Health, Welfare and Sport we developed a consensus-based standard set of generic PROs and PROMs to be implemented across Dutch medical specialist care. Methods: A working group of mandated representatives of umbrella organizations involved in Dutch medical specialist care, together with PROM experts and patient organizations worked through a structured, consensus-driven co-creation process. This included literature reviews, online expert and working group meetings, and feedback from national patient- and umbrella organizations. The ‘PROM-cycle’ methodology was used to select feasible, valid, and reliable PROMs to obtain domain scores for each of the PROs included in the set. Results: Eight PROs across different domains of health were ultimately endorsed: symptoms (pain & fatigue), functioning (physical, social/participation, mental [anxiety & depression]), and overarching (quality of life & perceived overall health). A limited number of generic PROMs was endorsed. PROMIS short forms were selected as the preferred instruments for all PROs. Several recommendations were formulated to facilitate healthcare system level adoption and implementation of the standard set. Conclusions: We developed a consensus-based standard set of Generic PROMs and a set of recommendations to facilitate healthcare system wide implementation across Dutch medical specialist care.
Original languageEnglish
Pages (from-to)1595-1605
Number of pages11
JournalQuality of life research
Issue number6
Early online date2023
Publication statusPublished - Jun 2023


  • Patient reported outcome measures (PROMs)
  • Patient reported outcomes (PROs)
  • Quality improvement
  • Shared decision-making (SDM)
  • Value-based health care (VBHC)

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