Advertisement

The Patient - Patient-Centered Outcomes Research

, Volume 7, Issue 3, pp 261–270 | Cite as

Involving Patients in a Multidisciplinary European Consensus Process and in the Development of a ‘Patient Summary of the Consensus Document for Colon and Rectal Cancer Care’

  • Petra G. Boelens
  • Claire Taylor
  • Geoffrey Henning
  • Perla J. Marang-van de Mheen
  • Eloy Espin
  • Theo Wiggers
  • Jola Gore-Booth
  • Barbara Moss
  • Vincenzo Valentini
  • Cornelis J. H. van de Velde
Review Article

Abstract

Context

High-quality cancer care should be accessible for patients and healthcare professionals. Involvement of patients as partners in guideline formation and consensus processes is still rarely found. EURECCA, short for European Registration of Cancer Care, is the platform to improve outcomes of cancer care by reducing variation in the diagnostic and treatment process. EURECCA acknowledges the important role of patients in implementation of consensus information in clinical practice.

Objective

The aim of this article is to describe the process of involving patients in the consensus process and in developing the patient summary of the consensus for colon and rectal cancer care.

Methods

The Delphi method for achieving consensus was used. Three online voting rounds and one tele-voting round were offered to an expert panel of oncology professionals and patient representatives. At four different stages, patients and/or patient representatives were involved in the process: (1) during the consensus process, (2) lecturing about the role of the patient, (3) development of the patient summary, and (4) testing the patient summary.

Results

Representatives were invited to the voting and commenting rounds of this process and given an equal vote. Although patients were not consulted during the planning stages of this process, patient involvement increased following the panel’s discussion of the implementation of the consensus among the patient population. After the consensus meeting, the patient summary was written by patient representatives, oncologists and nurses. A selection of proactive patients reviewed the draft patient summary; responses were positive and several patient-reported outcomes were added. Questionnaires to evaluate the use and implementation of the patient summary in daily practice are currently being developed and tested. Patient consultation will be needed in future planning for selection of topics.

Discussion

The present study may function as a model for future consensus processes to involve patients at different stages and to implement both patient and healthcare professional versions in daily practice.

Keywords

Rectal Cancer Cancer Care Patient Involvement Delphi Method Consensus Meeting 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

Notes

Acknowledgments

We thank all patients involved in this Consensus project and we thank all experts involved in this consensus project on behalf of the EURECCA consortium. All authors declare no conflict of interest.

Supplementary material

40271_2014_61_MOESM1_ESM.gif (59 kb)
Supplementary material 1 (GIF 58 kb)
40271_2014_61_MOESM2_ESM.gif (61 kb)
Supplementary material 2 (GIF 60 kb)
40271_2014_61_MOESM3_ESM.pptx (62 kb)
Supplementary material 3 (PPTX 62 kb)
40271_2014_61_MOESM4_ESM.pptx (65 kb)
Supplementary material 4 (PPTX 64 kb)
40271_2014_61_MOESM5_ESM.docx (232 kb)
Supplementary material 5 (DOCX 231 kb)
40271_2014_61_MOESM6_ESM.doc (128 kb)
Supplementary material 6 (DOC 128 kb)
40271_2014_61_MOESM7_ESM.doc (96 kb)
Supplementary material 7 (DOC 96 kb)
40271_2014_61_MOESM8_ESM.doc (34 kb)
Supplementary material 8 (DOC 34 kb)

References

  1. 1.
    Mayer M. Seeking what matters: patients as research partners. Patient. 2012;5:71–4.PubMedCentralPubMedCrossRefGoogle Scholar
  2. 2.
    van der Weijden T, Pieterse AH, Koelewijn-van Loon MS, Knaapen L, Legare F, Boivin A, Burgers JS, Stiggelbout AM, Faber M, Elwyn G. How can clinical practice guidelines be adapted to facilitate shared decision making? A qualitative key-informant study. BMJ Qual Saf. 2013;22:855–63.PubMedCrossRefGoogle Scholar
  3. 3.
    Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JH. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014;1:CD001431. doi: 10.1002/14651858.CD001431.pub4.
  4. 4.
    http://www.adjuvantonline.com/; 2003. Accessed 19 May 2014.
  5. 5.
    Stalmeier PF, van Tol-Geerdink JJ, van Lin EN, Schimmel E, Huizenga H, van Daal WA, Leer JW. Doctors’ and patients’ preferences for participation and treatment in curative prostate cancer radiotherapy. J Clin Oncol. 2007;25:3096–100.PubMedCrossRefGoogle Scholar
  6. 6.
    van de Velde CJ, Aristei C, Boelens PG, Beets-Tan RG, Blomqvist L, Borras JM, van den Broek CB, Brown G, Coebergh JW, Cutsem EV, Espin E, Gore-Booth J, Glimelius B, Haustermans K, Henning G, Iversen LH, Han van Krieken J, Marijnen CA, Mroczkowski P, Nagtegaal I, Naredi P, Ortiz H, Pahlman L, Quirke P, Rodel C, Roth A, Rutten HJ, Schmoll HJ, Smith J, Tanis PJ, Taylor C, Wibe A, Gambacorta MA, Meldolesi E, Wiggers T, Cervantes A, Valentini V. EURECCA colorectal: multidisciplinary mission statement on better care for patients with colon and rectal cancer in Europe. Eur J Cancer. 2013;49:2784–90.PubMedCrossRefGoogle Scholar
  7. 7.
    van de Velde CJ, Boelens PG, Borras JM, Coebergh JW, Cervantes A, Blomqvist L, Beets-Tan RG, van den Broek CB, Brown G, van Cutsem E, Espin E, Haustermans K, Glimelius B, Iversen LH, van Krieken JH, Marijnen CA, Henning G, Gore-Booth J, Meldolesi E, Mroczkowski P, Nagtegaal I, Naredi P, Ortiz H, Pahlman L, Quirke P, Rodel C, Roth A, Rutten H, Schmoll HJ, Smith JJ, Tanis PJ, Taylor C, Wibe A, Wiggers T, Gambacorta MA, Aristei C, Valentini V. EURECCA colorectal: multidisciplinary management: European consensus conference colon and rectum. Eur J Cancer. 2014;50:1.PubMedCrossRefGoogle Scholar
  8. 8.
    Chu CC, Sandford BA. The Delphi method; making sense of consensus. Pract Assess Res Eval. 2007;12:1–8.Google Scholar
  9. 9.
    Breugom AJ, Boelens PG, van den Broek CB, Cervantes A, Van Cutsem E, Schmoll HJ, Valentini V, van de Velde CJ. Quality assurance in the treatment of colorectal cancer: the EURECCA initiative. Ann Oncol. 2014.Google Scholar
  10. 10.
    Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, Rosso S, Coebergh JW, Comber H, Forman D, Bray F. Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012. Eur J Cancer. 2013;49:1374–403.PubMedCrossRefGoogle Scholar
  11. 11.
    Maringe C, Walters S, Rachet B, Butler J, Fields T, Finan P, Maxwell R, Nedrebo B, Pahlman L, Sjovall A, Spigelman A, Engholm G, Gavin A, Gjerstorff ML, Hatcher J, Johannesen TB, Morris E, McGahan CE, Tracey E, Turner D, Richards MA, Coleman MP. Stage at diagnosis and colorectal cancer survival in six high-income countries: a population-based study of patients diagnosed during 2000–2007. Acta Oncol. 2013;52:919–32.PubMedCrossRefGoogle Scholar
  12. 12.
    Valentini V, Aristei C, Glimelius B, Minsky BD, Beets-Tan R, Borras JM, Haustermans K, Maingon P, Overgaard J, Pahlman L, Quirke P, Schmoll HJ, Sebag-Montefiore D, Taylor I, van Cutsem E, van de Vedlde C, Cellini N, Latini P. Multidisciplinary rectal cancer management: 2nd European Rectal Cancer Consensus Conference (EURECA-CC2). Radiother Oncol. 2009;92:148–63.PubMedCrossRefGoogle Scholar
  13. 13.
    http://www.europacolon.com/; 2013. Accessed 19 May 2014.
  14. 14.
    http://www.canceraudit.eu; 2007. Accessed 19 May 2014.
  15. 15.
    Valentini V, Glimelius B, Haustermans K, Marijnen CA, Rodel C, Gambacorta MA, Boelens PG, Aristei C, van de Velde CJ. EURECCA consensus conference highlights about rectal cancer clinical management: the radiation oncologist’s expert review. Radiother Oncol. 2014;110:195–8.PubMedCrossRefGoogle Scholar
  16. 16.
    Tudyka V, Blomqvist L, Beets-Tan RG, Boelens PG, Valentini V, van de Velde CJ, Dieguez A, Brown G. EURECCA consensus conference highlights about colon and rectal cancer multidisciplinary management: the radiology experts review. Eur J Surg Oncol. 2014;40:469–75.PubMedCrossRefGoogle Scholar
  17. 17.
    van de Velde CJ, Boelens PG, Tanis PJ, Espin E, Mroczkowski P, Naredi P, Pahlman L, Ortiz H, Rutten HJ, Breugom AJ, Smith JJ, Wibe A, Wiggers T, Valentini V. Experts reviews of the multidisciplinary consensus conference colon and rectal cancer 2012: science, opinions and experiences from the experts of surgery. Eur J Surg Oncol. 2014;40:454–68.PubMedCrossRefGoogle Scholar
  18. 18.
    Quirke P, West NP, Nagtegaal ID. EURECCA consensus conference highlights about colorectal cancer clinical management: the pathologists expert review. Virchows Arch. 2014;464:129–34.PubMedCrossRefGoogle Scholar
  19. 19.
    Chow A, Mayer EK, Darzi AW, Athanasiou T. Patient-reported outcome measures: the importance of patient satisfaction in surgery. Surgery. 2009;146:435–43.PubMedCrossRefGoogle Scholar
  20. 20.
    Epstein RM, Franks P, Fiscella K, Shields CG, Meldrum SC, Kravitz RL, Duberstein PR. Measuring patient-centered communication in patient–physician consultations: theoretical and practical issues. Soc Sci Med. 2005;61:1516–28.PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing Switzerland 2014

Authors and Affiliations

  • Petra G. Boelens
    • 1
  • Claire Taylor
    • 2
  • Geoffrey Henning
    • 3
  • Perla J. Marang-van de Mheen
    • 4
  • Eloy Espin
    • 5
  • Theo Wiggers
    • 6
  • Jola Gore-Booth
    • 3
  • Barbara Moss
    • 7
  • Vincenzo Valentini
    • 8
  • Cornelis J. H. van de Velde
    • 9
  1. 1.Department of SurgeryLeiden University Medical CenterLeidenThe Netherlands
  2. 2.St Mark’s HospitalMiddlesexUK
  3. 3.EUROPAColon, Unit 5SalisburyUK
  4. 4.Department of Medical Decision MakingLeiden University Medical CenterLeidenThe Netherlands
  5. 5.Colorectal Surgery Unit, Hospital Valle de HebronAutonomous University of BarcelonaBarcelonaSpain
  6. 6.Department of Surgical Oncology, European Society of Surgical OncologyUniversity Medical Center Groningen, University of GroningenGroningenThe Netherlands
  7. 7.MiddlesexUK
  8. 8.European Society of Radiotherapy and Oncology, Cattedra di Radioterapia, Università Cattolica S. CuoreRomeItaly
  9. 9.Department of Surgery, European Society of Surgical OncologyLeiden University Medical CenterLeidenThe Netherlands

Personalised recommendations