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; Mariet Verburg; Philip van der Wees; Anna J. Beurskens

doi:10.1007/s11136-022-03328-3

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, Mariet Verburg, Philip van der WeesAnna J. Beurskens

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

Abstract

PurposeThe 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.MethodsA 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.ResultsEight 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.ConclusionsWe 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 language	English
Pages (from-to)	1595-1605
Number of pages	11
Journal	Quality of Life Research
Volume	32
Issue number	6
Early online date	Feb 2023
DOIs	https://doi.org/10.1007/s11136-022-03328-3
Publication status	Published - Jun 2023

Keywords

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

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10.1007/s11136-022-03328-3Licence: CC BY

1 Erratum / corrigendum / retractions

Correction: Development of a standard set of PROs and generic PROMs for Dutch medical specialist care
Voshaar, M. O., Terwee, C. B., Haverman, L., van der Kolk, B., Harkes, M., van Woerden, C. S., van Breda, F., Breukink, S., de Hoop, I., Vermeulen, H., de Graaf, E., Hazelzet, J., van Leiden, B., Stienen, J., Hoekstra, M., Bart, H., van Bommel, H., Determann, D., Verburg, M., van der Wees, P., & 1 othersBeurskens, A. J., Jun 2023, In: Quality of Life Research. 32, 6, p. 1607-1607 1 p.
Research output: Contribution to journal › Erratum / corrigendum / retractions › Academic

Open Access

Cite this

Oude Voshaar, M., Terwee, C. B., Haverman, L., van der Kolk, B., Harkes, M., van Woerden, C. S., van Breda, F., Breukink, S., de Hoop, I., Vermeulen, H., de Graaf, E., Hazelet, J., van Leiden, B., Stienen, J., Hoekstra, M., Bart, H., van Bommel, H., Determann, D., Verburg, M., ... Beurskens, A. J. (2023). 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. Quality of Life Research, 32(6), 1595-1605. https://doi.org/10.1007/s11136-022-03328-3

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title = "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",

abstract = "PurposeThe 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.MethodsA 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.ResultsEight 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.ConclusionsWe 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.",

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

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

note = "Publisher Copyright: {\textcopyright} 2023, The Author(s).",

year = "2023",

month = jun,

doi = "10.1007/s11136-022-03328-3",

language = "English",

volume = "32",

pages = "1595--1605",

journal = "Quality of Life Research",

issn = "0962-9343",

publisher = "Springer, Cham",

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Oude Voshaar, M, Terwee, CB, Haverman, L, van der Kolk, B, Harkes, M, van Woerden, CS, van Breda, F, Breukink, S, de Hoop, I, Vermeulen, H, de Graaf, E, Hazelet, J, van Leiden, B, Stienen, J, Hoekstra, M, Bart, H, van Bommel, H, Determann, D, Verburg, M, van der Wees, P & Beurskens, AJ 2023, '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', Quality of Life Research, vol. 32, no. 6, pp. 1595-1605. https://doi.org/10.1007/s11136-022-03328-3

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. / Oude Voshaar, Martijn; Terwee, Caroline B.; Haverman, Lotte et al.
In: Quality of Life Research, Vol. 32, No. 6, 06.2023, p. 1595-1605.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - 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

AU - Oude Voshaar, Martijn

AU - Terwee, Caroline B.

AU - Haverman, Lotte

AU - van der Kolk, Bas

AU - Harkes, Marleen

AU - van Woerden, Christiaan S.

AU - van Breda, Fenna

AU - Breukink, Stephanie

AU - de Hoop, Irma

AU - Vermeulen, Hester

AU - de Graaf, Evelien

AU - Hazelet, Jan

AU - van Leiden, Barbara

AU - Stienen, Jozette

AU - Hoekstra, Marian

AU - Bart, Hans

AU - van Bommel, Hester

AU - Determann, Domino

AU - Verburg, Mariet

AU - van der Wees, Philip

AU - Beurskens, Anna J.

PY - 2023/6

Y1 - 2023/6

N2 - PurposeThe 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.MethodsA 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.ResultsEight 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.ConclusionsWe 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.

AB - PurposeThe 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.MethodsA 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.ResultsEight 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.ConclusionsWe 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.

KW - Patient reported outcome measures (PROMs)

KW - Patient reported outcomes (PROs)

KW - Quality improvement

KW - Shared decision-making (SDM)

KW - Value-based health care (VBHC)

U2 - 10.1007/s11136-022-03328-3

DO - 10.1007/s11136-022-03328-3

M3 - Article

C2 - 36757571

SN - 0962-9343

VL - 32

SP - 1595

EP - 1605

JO - Quality of Life Research

JF - Quality of Life Research

IS - 6

ER -

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

Abstract

Keywords

Access to Document

Research output

Correction: Development of a standard set of PROs and generic PROMs for Dutch medical specialist care

Cite this