Ietje Perfors

140 Chapter 6 necessary instructions to perform a TOC and the expected steps to take by phone by email and through a website. Outcomes Primary outcomes were patient satisfaction with care and healthcare utilisation in the year after inclusion. Secondary outcomes were health related quality of life, mental health and patient empowerment. Data collection Patient reported outcomes and use of paramedical care were collected using questionnaires. The timing of questionnaires depended on the duration of primary cancer treatment. If primary treatment lasted more than 9 months, questionnaires were provided at baseline (T0), after 2 weeks (T1), every 3 months (T2, T3, T4) and up to 12months after inclusion (T5). If primary treatment was completed between 6 and 9months after inclusion, T5 was provided 3 months after the end of primary treatment. In this case, the T4 questionnaire was omitted. If primary treatment was completed within 6 months after inclusion, T3 was planned at completion of treatment and T5 threemonths later. The remaining questionnaires were omitted. Consequently, every patient received at least the questionnaires from T0, T1, T3 and T5. Questionnaires were filled in online or, if preferred by the patient, on paper. Non-responders received two reminders by e-mail after two and five days and were contacted by phone by the researcher if non-response persisted. Healthcare utilisation was determined based on the Electronic Medical Records (EMR) registrations in primary care and hospital. These EMR data include free text and coded data describing daily care, i.e., consultation and referral descriptions, medication and diagnostic information. From the primary care EMR, we also extracted GP consultation frequency in the year prior to inclusion. GP characteristics at T0 and rurality were