Page 26 - Shared Guideline Development Experiences in Fertility Care

Chapter 2
Abstract
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 identi ed and compared.
Results: Overall, we identi ed 32 key clinical issues among infertile couples and 23 among professionals. Of the de ned main key clinical issues, infertile couples mentioned eight issues that were not mentioned by the professionals. ese 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 di erently: the lack of emotional support and respect for patients’ values.
Conclusions: Including patients from the rst 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.
Key words: infertility, guideline development, patient-centred care, quality of care.
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