Table 1.

Questions used as interview guide for interviews with developers who involved patients

Questions for developers who involved patients
Patient recruitment
-Why did you decide to involve patients in the development of your questionnaire?
-How many patients were involved in your development process?
-How did you decide how many patients you wanted to involve?
-How did you recruit the patients who were involved in your study?
-Did you have any difficulties with the recruitment of patients?
-Would you consider the patients who were involved a good representation of the patient group?
Methods of involving patients
-How many methods did you use to involve patients in the development of your questionnaire?
-During which development phases did you involve patients?
-Which methods did you use to involve patients?
-How did you decide which methods to use?
-The participation ladder of decision making in health care consists of three steps. At the first step patients are involved as consultants. At the second step patients are considered partners and at the third step patients have a dominant role. Which step of the ladder describes the position of the patients in your development process the most accurate?
-Did you have any difficulties with involving patients in your development process?
-If focus groups were used, how many focus groups were organised and how many patients were involved per focus group?
-If interviews were used, how many interviews took place?
-Was a specific method used to interview the patients?
-If cognitive interviews were used, how many interviews took place?
-If another method was used; how many patients were involved?
-Which method was the most successful and why?
-Which method was the least successful and why?
Benefits and negative aspects of patient involvement
-Did patient involvement influence the questionnaire in any way?
-If you could go through the development process again, would you change anything concerning patient involvement?
-Were there any benefits from involving patients? What kind of benefits?
-Did you perceive any negative aspects concerning patient involvement? What kind of negative aspects?
-In hindsight, was there anything that could have been done to prevent these negative aspects?
-Did the benefits outweigh the costs?
-Would you recommend involving patients during the development process?