title: The involvement of gynaecological patients in the development of a clinical guideline for resumption of (work) activities in the Netherlands.
abstract: BACKGROUND
  Most initiatives for patient involvement in guideline development have been carried out for chronic diseases. The involvement of patients with incidental and non-threatening diseases is more complicated. Little knowledge is available on how these patient groups can successfully be involved in guideline development.
  
  
  OBJECTIVE
  To assess the effectiveness of the involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery.
  
  
  METHODS
  At three different stages patients were involved in the process: (i) three focus group discussions (FGDs) were organized, (ii) patients were involved for the instruction video, and (iii) patients tested the patient version of the clinical guideline. To assess the effectiveness, an evaluation framework was used. The guideline development process was divided into two parallel trajectories in which patients and professionals were consulted separately. Patients were primarily consulted for the development of the patient version, although their input also influenced the recommendations for resumption of (work) activities after surgery. Professionals were mainly involved in the development of the recommendations of the clinical guideline.
  
  
  CONCLUSIONS
  The involvement of gynaecological patients in the guideline development for resumption of (work) activities after surgery was successful in many respects. Consultation of individual patients by means of FGDs and with regular feedback moments has been rather effective for a guideline development process related to an incidental, non-threatening disease for which there is no patient organization. Patients' input contributed to applicability of the clinical guideline in daily practice. Increased patient involvement could be achieved by integration of the two parallel trajectories with additional participatory activities, such as a dialogue meeting.
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Carina A C M
authors.initials: CA
authors.lastname: Pittens
authors.affiliation: Department of Obstetrics and Gynaecology, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Antonie
authors.initials: A
authors.lastname: Vonk Noordegraaf
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Saskia C
authors.initials: SC
authors.lastname: van Veen
authors.affiliation: Department of Public and Occupational Health, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Johannes R
authors.initials: JR
authors.lastname: Anema
authors.affiliation: Department of Obstetrics and Gynaecology, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Judith A F
authors.initials: JA
authors.lastname: Huirne
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Jacqueline E W
authors.initials: JE
authors.lastname: Broerse
mesh_terms: D005260:Female; D017144:Focus Groups; D013509:Gynecologic Surgical Procedures; D006801:Humans; D020407:Internet; D009426:Netherlands; D010358:Patient Participation; D017410:Practice Guidelines as Topic; D062707:Return to Work
keywords: clinical guideline; guideline development; gynaecological patients; patient involvement; patients with an incidental and non-threatening disease