Table 1.

Interview schedules

Interview with patients

A Introduction by researcher

• Emphasis on voluntary participation

• Explanation of confidentiality and anonymity

• Permission for audio taping

• Short explanation of the goal of the interview

B Open part

• Patient’s course of diagnosis of Lynch syndrome

• Communication about diagnosis

C Structured part

Experience with and communication about:

• Screening (endoscopic and other)

• Surgery

• DNA-testing and genetic counselling

• Risk communication

Communication with:

• General practitioner

• Treating medical specialists

• Relatives

D Conclusion of the interview

• Issues that were not addressed

• Permission to approach a relative and treating medical specialists and general practitioner

Interview with medical specialists and general practitioners

A Introduction by researcher

• Emphasis on voluntary participation

• Explanation of confidentiality and anonymity

• Permission for audio taping

• Short explanation of the goal of the interview

B Open part

• Patient’s course of diagnosis (either about a patient specifically or the course of ‘a typical Lynch syndrome patient’)

• Communication about diagnosis

C Structured part

Experience with and communication about:

• Screening (depending on the specific expertise)

• Surgery (depending on the specific expertise)

• DNA-diagnostics and heredity

• Risk communication

• Referral

Communication with:

• General practitioner and/or other medical specialist involved

• Relatives of the patient

New developments

Their own role in the care for patients with Lynch syndrome and other hereditary cancers

D Conclusion of the interview

• Issues that were not addressed

Interviews differed slightly between these specialists depending on their level of expertise. Furthermore, some interviews focused on a specific patient whereas others addressed patients in general with Lynch syndrome