Marieke van Leeuwen, PhD PI’s Neil Aaronson and Susanne Osanto Methods and Measures for Assessing Quality of Life of Long-Term Survivors of Testicular and Prostate Cancer Michel Bolla, Fabio Efficace, Sophie D. Fosså, Bernhard Holzner, Lonneke van de Poll-Franse, Hendrik van Poppel, and Ronald de Wit 1 1 alphabetic order
"From the time of its discovery and for the balance of life, an individual diagnosed with cancer is a survivor."
U.S. National Cancer Institute:
"An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.“
Permanent survival : roughly equated with “cure” Focus on long-term risks (e.g., 2nd primaries) and effects (e.g., chronic fatigue) 1
3. Would you like to work fewer hours per week if it was economically possible? Absolutely not / rarely / uncertain / maybe/ absolutely 1 2 3 4 5 5. What is your present marital status? □ Married / living together □ Divorced / separated □ Widow / widower / partner diseased □ In a relationship but living apart □ Never been married / never been living together 6. I feel a sense of pride or accomplishment from surviving cancer 9. Having had cancer makes me feel unsure about my future Strongly disagree 1 Disagree 2 Neutral 3 Agree 4 Strongly agree 5 4. During the past 4 weeks , have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Yes/No a) Cut down on the amount of time you spent on work or other activities b) Accomplished less than you would like c) Were limited in the kind of work or other activities d) Had difficulty performing the work or other activities (for example, it took extra time) 25. Have you had difficulty remembering things? Not at all/ A little / Quite a bit / Very much 1 2 3 4 31. Have you had to urinate frequently during the day? Not at all/ A little / Quite a bit / Very much 1 2 3 4 18. Have you felt less masculine as a result of your disease or treatment? Not at all/ A little / Quite a bit / Very much 1 2 3 4 1 phase 1/2 completed, PI Bernhard Holzner
How to verify vital status and contact disease-free patients?
the Netherlands: via hospital records and general practitioner
Belgium: patients are still in follow-up
Norway: patients are in centralized follow-up and disease status can be checked in cancer registry
England, France and Italy: part of the research, e.g. in Italy patients keep their hospital records with them