DECISION MAKING NEEDS OF EARLY-STAGE PROSTATE CANCER PATIENTS: A COMPARISON OF SEVEN EUROPEAN COUNTRIES AND CANADA
Deb Feldman-Stewart, PhD1, Carlo Capirci, MD2, Sarah Brennenstuhl, BA1, Ufuk Abacioglu, MD3, Marzena Gawkowska-Suwinska, MD4, Alicja Heyda, MA4, Sefik Igdem, MD5, Victor Macias, MD6, Clare Moynihan, MSc7, Chris Parker, MD7, Madelon Pijls-Johannesma, MSc8, Francis Van Gils, PhD, MD8, and Herbert Wördehoff, MD9. (1) Queen's University, Kingston, ON, Canada, (2) Azienda ULSS 18, Rovigo, Italy, (3) Marmara University Hospital, Istanbul, Turkey, (4) Centrum Onkologii-Inst. M. Curie, Gliwice, Poland, (5) Metropolitan Florence Nightingale Hospital, Istanbul, Turkey, (6) Hospital General de Catalunya, Barcelona, Spain, (7) The Institute of Cancer Research and The Royal Marsden NHS Trust, London, England, (8) Maastro-clinic, Maastricht, Netherlands, (9) Klinik für Strahlentherapie, Magdeburg, Germany
Purpose: To describe the decisional role that patients with early-stage prostate cancer in each country want to take, and to compare the information they need for decision making (DM). Method: A survey of recently treated patients was conducted in Canada, Italy, England, Germany, Poland, Netherlands, Spain, and Turkey. Rigorous translation and piloting processes ensured that culture and language were appropriate. Eligibility criteria were: diagnosed with early-stage disease, treated within the previous 3-24 months, and could read survey language. Participants were recruited as consecutively eligible patients in followup clinics or all eligible patients from a database. Each participant rated, using a 4-pt Likert scale (essential, desired, no opinion, avoid), how important it was to obtain answers, between diagnosis and treatment decision, to each of 92 questions. For each question rated essential/desired, participants specified the purposes for that information: to help understand, decide, plan, not sure, other. Participants indicated the decisional role they recalled taking in their actual decision and the role they'd prefer if their decision was made now. Results: The number of participants in each country were: Canada-130, England-64, Italy-47, Germany-58, Poland-55, the Netherlands-100, Spain-49, and Turkey-66 (response rates: 58%-77%). Between 90%-98% of each country's participants recalled taking an active role in their treatment decisions and that increased slightly (to 94%-100%) but significantly if they were making the decision today (Sign Test p=0.02); there were no significant differences among countries. The countries fell into three groups regarding the mean number of questions rated essential for DM: (A) highest number from Canada-19, England-21, Germany-18, (B) intermediate from Netherlands-13, Spain-16, Turkey-12, and (C) least from Italy-10, Poland-9, (F=5.25, p=0.000). The country-group differences were also seen in the number of questions essential for DM to <10% of participants: (A) Canada-13, England-16, Germany-13, (B) Netherlands-23, Spain-17, Turkey-27, and (C) Italy-49, Poland-46. There was, however, wide variation within each country in the particular questions rated essential for DM: only one country (England) had any questions rated essential for DM by >50% of respondents (2 questions). Conclusions: Almost all participants from each country want to participate in their treatment decisions. Although there are country differences in the amount of information required, wide variation within each country suggests that information for DM should be addressed on an individual basis in all countries.