Added value of involving patients in the first step of multidisciplinary guideline development: a qualitative interview study among infertile patients

Background Patient involvement in scoping the guideline is emphasized, but published initiatives actively involving patients are generally limited to the writing and reviewing phase. Objective To assess patients' added value to the scoping phase of a multidisciplinary guideline on infertility. Design Qualitative interview study. Setting and participants We conducted interviews among 12 infertile couples and 17 professionals. Intervention We listed and compared the couples' and professionals' key clinical issues (=care aspects that need improvement) to be addressed in the guideline according to four domains: current guidelines, professionals, patients and organization of care. Main Outcome Measures Main key clinical issues suggested by more than three quarters of the infertile couples and/or at least two professionals were identified and compared. Results Overall, we identified 32 key clinical issues among infertile couples and 23 among professionals. Of the defined main key clinical issues, infertile couples mentioned eight issues that were not mentioned by the professionals. These main key clinical issues mainly concerned patient-centred (e.g. poor information provision and poor alignment of care) aspects of care on the professional and organizational domain. Both groups mentioned two main key clinical issues collectively that were interpreted differently: the lack of emotional support and respect for patients' values. Conclusions Including patients from the first phase of the guideline development process leads to valuable additional main key clinical issues for the next step of a multidisciplinary guideline development process and broadens the scope of the guideline, particularly regarding patient-centredness and organizational issues from a patients' perspective.