Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers

Lennart B. van Rijssen, Arja Gerritsen, Inge Henselmans, Mirjam A. Sprangers, Marc Jacobs, Claudio Bassi, Olivier R. Busch, Carlos Fernández-del Castillo, Zhi Ven Fong, Jin He, Jin-Young Jang, Ammar A. Javed, Sun-Whe Kim, Laura Maggino, Abhishek Mitra, Vikas Ostwal, Silvia Pellegrini, Shailesh V. Shrikhande, Johanna W. Wilmink, Christopher L. Wolfgang & 4 others Hanneke W. van Laarhoven, Marc G. Besselink, Nita Nandkumar Chavan, Suriya Umesh Dalvi

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Objective:To establish an international core set of patient-reported outcomes (PROs) selected by both patients and healthcare providers (HCPs) from the United States (US), Europe, and Asia.Summary Background Data:PROs are increasingly recognized in pancreatic cancer studies. There is no consensus on which of the many available PROs are most important.Methods:A multicenter Delphi study among patients with pancreatic cancer (curative- and palliative-setting) and HCPs in 6 pancreatic centers in the US (Baltimore, Boston), Europe (Amsterdam, Verona), and Asia (Mumbai, Seoul) was performed. In round 1, participants rated the importance of 56 PROs on a 1 to 9 Likert scale. PROs rated as very important (scores 7-9) by the majority (≥80%) of curative- and/or palliative-patients as well as HCPs were included in the core set. PROs not fulfilling these criteria were presented again in round 2, together with feedback on individual and group ratings. Remaining PROs were ranked based on the importance ratings.Results:In total 731 patients and HCPs were invited, 501 completed round 1, and 420 completed both rounds. This included 204 patients in curative-setting, 74 patients in palliative-setting, and 142 HCPs. After 2 rounds, 8 PROs were included in the core set: general quality of life, general health, physical ability, ability to work/do usual activities, fear of recurrence, satisfaction with services/care organization, abdominal complaints, and relationship with partner/family. Conclusions: This international Delphi study among patients and HCPs established a core set of PROs in pancreatic cancer, which should facilitate the design of future pancreatic cancer trials and outcomes research.
Original languageEnglish
Pages (from-to)158-164
JournalAnnals of Surgery
Volume270
Issue number1
DOIs
Publication statusPublished - 2019

Cite this

van Rijssen, L. B., Gerritsen, A., Henselmans, I., Sprangers, M. A., Jacobs, M., Bassi, C., ... Dalvi, S. U. (2019). Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers. Annals of Surgery, 270(1), 158-164. https://doi.org/10.1097/SLA.0000000000002633
van Rijssen, Lennart B. ; Gerritsen, Arja ; Henselmans, Inge ; Sprangers, Mirjam A. ; Jacobs, Marc ; Bassi, Claudio ; Busch, Olivier R. ; Fernández-del Castillo, Carlos ; Fong, Zhi Ven ; He, Jin ; Jang, Jin-Young ; Javed, Ammar A. ; Kim, Sun-Whe ; Maggino, Laura ; Mitra, Abhishek ; Ostwal, Vikas ; Pellegrini, Silvia ; Shrikhande, Shailesh V. ; Wilmink, Johanna W. ; Wolfgang, Christopher L. ; van Laarhoven, Hanneke W. ; Besselink, Marc G. ; Chavan, Nita Nandkumar ; Dalvi, Suriya Umesh. / Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers. In: Annals of Surgery. 2019 ; Vol. 270, No. 1. pp. 158-164.
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title = "Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers",
abstract = "Objective:To establish an international core set of patient-reported outcomes (PROs) selected by both patients and healthcare providers (HCPs) from the United States (US), Europe, and Asia.Summary Background Data:PROs are increasingly recognized in pancreatic cancer studies. There is no consensus on which of the many available PROs are most important.Methods:A multicenter Delphi study among patients with pancreatic cancer (curative- and palliative-setting) and HCPs in 6 pancreatic centers in the US (Baltimore, Boston), Europe (Amsterdam, Verona), and Asia (Mumbai, Seoul) was performed. In round 1, participants rated the importance of 56 PROs on a 1 to 9 Likert scale. PROs rated as very important (scores 7-9) by the majority (≥80{\%}) of curative- and/or palliative-patients as well as HCPs were included in the core set. PROs not fulfilling these criteria were presented again in round 2, together with feedback on individual and group ratings. Remaining PROs were ranked based on the importance ratings.Results:In total 731 patients and HCPs were invited, 501 completed round 1, and 420 completed both rounds. This included 204 patients in curative-setting, 74 patients in palliative-setting, and 142 HCPs. After 2 rounds, 8 PROs were included in the core set: general quality of life, general health, physical ability, ability to work/do usual activities, fear of recurrence, satisfaction with services/care organization, abdominal complaints, and relationship with partner/family. Conclusions: This international Delphi study among patients and HCPs established a core set of PROs in pancreatic cancer, which should facilitate the design of future pancreatic cancer trials and outcomes research.",
author = "{van Rijssen}, {Lennart B.} and Arja Gerritsen and Inge Henselmans and Sprangers, {Mirjam A.} and Marc Jacobs and Claudio Bassi and Busch, {Olivier R.} and {Fern{\'a}ndez-del Castillo}, Carlos and Fong, {Zhi Ven} and Jin He and Jin-Young Jang and Javed, {Ammar A.} and Sun-Whe Kim and Laura Maggino and Abhishek Mitra and Vikas Ostwal and Silvia Pellegrini and Shrikhande, {Shailesh V.} and Wilmink, {Johanna W.} and Wolfgang, {Christopher L.} and {van Laarhoven}, {Hanneke W.} and Besselink, {Marc G.} and Chavan, {Nita Nandkumar} and Dalvi, {Suriya Umesh}",
year = "2019",
doi = "10.1097/SLA.0000000000002633",
language = "English",
volume = "270",
pages = "158--164",
journal = "Annals of Surgery",
issn = "0003-4932",
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van Rijssen, LB, Gerritsen, A, Henselmans, I, Sprangers, MA, Jacobs, M, Bassi, C, Busch, OR, Fernández-del Castillo, C, Fong, ZV, He, J, Jang, J-Y, Javed, AA, Kim, S-W, Maggino, L, Mitra, A, Ostwal, V, Pellegrini, S, Shrikhande, SV, Wilmink, JW, Wolfgang, CL, van Laarhoven, HW, Besselink, MG, Chavan, NN & Dalvi, SU 2019, 'Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers' Annals of Surgery, vol. 270, no. 1, pp. 158-164. https://doi.org/10.1097/SLA.0000000000002633

Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers. / van Rijssen, Lennart B.; Gerritsen, Arja; Henselmans, Inge; Sprangers, Mirjam A.; Jacobs, Marc; Bassi, Claudio; Busch, Olivier R.; Fernández-del Castillo, Carlos; Fong, Zhi Ven; He, Jin; Jang, Jin-Young; Javed, Ammar A.; Kim, Sun-Whe; Maggino, Laura; Mitra, Abhishek; Ostwal, Vikas; Pellegrini, Silvia; Shrikhande, Shailesh V.; Wilmink, Johanna W.; Wolfgang, Christopher L.; van Laarhoven, Hanneke W.; Besselink, Marc G.; Chavan, Nita Nandkumar; Dalvi, Suriya Umesh.

In: Annals of Surgery, Vol. 270, No. 1, 2019, p. 158-164.

Research output: Contribution to journalArticleAcademicpeer-review

TY - JOUR

T1 - Core Set of Patient-reported Outcomes in Pancreatic Cancer (COPRAC): An International Delphi Study among Patients and Health Care Providers

AU - van Rijssen, Lennart B.

AU - Gerritsen, Arja

AU - Henselmans, Inge

AU - Sprangers, Mirjam A.

AU - Jacobs, Marc

AU - Bassi, Claudio

AU - Busch, Olivier R.

AU - Fernández-del Castillo, Carlos

AU - Fong, Zhi Ven

AU - He, Jin

AU - Jang, Jin-Young

AU - Javed, Ammar A.

AU - Kim, Sun-Whe

AU - Maggino, Laura

AU - Mitra, Abhishek

AU - Ostwal, Vikas

AU - Pellegrini, Silvia

AU - Shrikhande, Shailesh V.

AU - Wilmink, Johanna W.

AU - Wolfgang, Christopher L.

AU - van Laarhoven, Hanneke W.

AU - Besselink, Marc G.

AU - Chavan, Nita Nandkumar

AU - Dalvi, Suriya Umesh

PY - 2019

Y1 - 2019

N2 - Objective:To establish an international core set of patient-reported outcomes (PROs) selected by both patients and healthcare providers (HCPs) from the United States (US), Europe, and Asia.Summary Background Data:PROs are increasingly recognized in pancreatic cancer studies. There is no consensus on which of the many available PROs are most important.Methods:A multicenter Delphi study among patients with pancreatic cancer (curative- and palliative-setting) and HCPs in 6 pancreatic centers in the US (Baltimore, Boston), Europe (Amsterdam, Verona), and Asia (Mumbai, Seoul) was performed. In round 1, participants rated the importance of 56 PROs on a 1 to 9 Likert scale. PROs rated as very important (scores 7-9) by the majority (≥80%) of curative- and/or palliative-patients as well as HCPs were included in the core set. PROs not fulfilling these criteria were presented again in round 2, together with feedback on individual and group ratings. Remaining PROs were ranked based on the importance ratings.Results:In total 731 patients and HCPs were invited, 501 completed round 1, and 420 completed both rounds. This included 204 patients in curative-setting, 74 patients in palliative-setting, and 142 HCPs. After 2 rounds, 8 PROs were included in the core set: general quality of life, general health, physical ability, ability to work/do usual activities, fear of recurrence, satisfaction with services/care organization, abdominal complaints, and relationship with partner/family. Conclusions: This international Delphi study among patients and HCPs established a core set of PROs in pancreatic cancer, which should facilitate the design of future pancreatic cancer trials and outcomes research.

AB - Objective:To establish an international core set of patient-reported outcomes (PROs) selected by both patients and healthcare providers (HCPs) from the United States (US), Europe, and Asia.Summary Background Data:PROs are increasingly recognized in pancreatic cancer studies. There is no consensus on which of the many available PROs are most important.Methods:A multicenter Delphi study among patients with pancreatic cancer (curative- and palliative-setting) and HCPs in 6 pancreatic centers in the US (Baltimore, Boston), Europe (Amsterdam, Verona), and Asia (Mumbai, Seoul) was performed. In round 1, participants rated the importance of 56 PROs on a 1 to 9 Likert scale. PROs rated as very important (scores 7-9) by the majority (≥80%) of curative- and/or palliative-patients as well as HCPs were included in the core set. PROs not fulfilling these criteria were presented again in round 2, together with feedback on individual and group ratings. Remaining PROs were ranked based on the importance ratings.Results:In total 731 patients and HCPs were invited, 501 completed round 1, and 420 completed both rounds. This included 204 patients in curative-setting, 74 patients in palliative-setting, and 142 HCPs. After 2 rounds, 8 PROs were included in the core set: general quality of life, general health, physical ability, ability to work/do usual activities, fear of recurrence, satisfaction with services/care organization, abdominal complaints, and relationship with partner/family. Conclusions: This international Delphi study among patients and HCPs established a core set of PROs in pancreatic cancer, which should facilitate the design of future pancreatic cancer trials and outcomes research.

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UR - https://www.ncbi.nlm.nih.gov/pubmed/29261524

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DO - 10.1097/SLA.0000000000002633

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JO - Annals of Surgery

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