Curriculum Vitae. March 2014

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1 Curriculum Vitae Anne Margarethe Stiggelbout, PhD Professor of Medical Decision Making Department of Medical Decision Making Leiden University Medical Center March Personal information Titles, Name: Prof.dr. Anne M. Stiggelbout Date of Birth: November 19, 1961 Place of birth: Caringbah (Australia) Nationality: Netherlands Professional address: Department of Medical Decision Making Leiden University Medical Center J10-S PO Box 9600, 2300 RC Leiden Office phone: secr.: /1529 Homepage: (Address of preference) Home Address: Pres. Kennedylaan GV Oegstgeest Home phone: ; Prof. Stiggelbout Curriculum Vitae and List of Publications November

2 2 Education and Training Education Masters Degree in Human Nutrition, Agricultural University, Wageningen, The Netherlands. Majors: Human Nutrition (supervisor: prof. van Staveren), Epidemiology (supervisors: Dr. Slooff, Prof. Vandenbroucke) Special Training period: Department of Epidemiology, University of Alabama at Birmingham, USA (supervision Prof.dr. P.Cole). Research assistantship; Courses in the Ph.D. program in Epidemiology PhD Leiden University. Thesis: "Trade-offs between quality and length of life. Methodological aspects of outcome valuation in cancer patients." Supervisors: Prof.dr. J.W.H. Leer, Prof.dr. J.C.J.M. de Haes (University of Amsterdam), Prof.dr. J. Kievit Post Graduate Education and Training Scientific Decision making in aging populations: research and challenges (Drs. Diefenbach, Step, and Wu). Annual meeting of the Society for Medical Decision Making 2011 Methods for cluster randomized trials of clinical decision support (Drs. Cebul, Dawson and Love). Short Course (CME) Annual meeting of the Society for Medical Decision Making 2007 Brunswik's lens model and Social Judgement Theory (Dr. T. Stewart et al). Short Course (CME) Annual meeting of the Society for Medical Decision Making 2005 Evaluating change in Health Related Quality of Life Measures. (Dr. K. Wyrwich), ISOQOL, Prague, 2002 Philosophical Ethics. First year class in Philosophy, Leiden University (Dr. A.M. Verbrugge), 2001 Antique Philosophy. First year class in Philosophy, Leiden University (Prof. dr. D. Th. Runia), 2002 Research on quality of care: study designs and applications. Netherlands Institute for Health Sciences/Netherlands School of Primary Care Research, 1997 Bioethical Perspectives and Medical Decision Making. Dr. L. McCullough & Dr. R. McNutt. Short Course (CME) Annual meeting of the Society for Medical Decision Making, 1997 Postgraduate (CME) course "To treat or not to treat?" Boerhaave Leiden, 1995 Advanced issues in regression modelling. F. Harrell. Short Course (CME) Annual meeting of the Society for Medical Decision Making, 1994 Longitudinal Data-analysis. Medical Statistics, Leiden University, 1993 Frontiers of utility theory: past problems and future prospects. Dr. J. Miyamoto, Dr. Prof. Stiggelbout Curriculum Vitae and List of Publications November

3 R Gonzalez, Dr. E. Weber. Short Course (CME) Annual meeting of the Society for Medical Decision Making, 1992 Medical Decision Making, introductory course, Leiden University, 1991; Advanced course, Leiden University, 1992 Advanced Statistical Methods in Epidemiology, International Agency for Research on Cancer, 1989 Epidemiology Summer Program 1986, New England Epidemiology Institute o Regression and categorical data methods, S. Lemeshow; o Logistic regression and survival analysis, D. Kleinbaum; o Cancer epidemiology, D. Trichopoulos Teaching, management skills, competences What To Teach in Communication Skills Teaching: Skills and Structure. Prof. Silverman, Cambridge, April 2012 Leiden Leading Professionals Program, LUMC, Wet- en regelgeving van klinisch wetenschappelijk onderzoek voor senior onderzoekers ( Legislation and regulation, for senior researchers ), Leiden, Boerhaave Commissie 2012 Curriculum Development in Communication Skills Teaching. Prof. Silverman, Cambridge, September 2011 Baak Senior Executive Program (light). Baak, Noordwijk, Teaching Lectures (Hoorcolleges geven). Leiden, ICLON 2008 Effective Executive Functioning and Management, LUMC, Training Outcome and Development Interviews, Leiden University, 2007 Training Yearly Performance Interviews for executives, LUMC, 2007 Effective Communication, LUMC, 2006 Work and Time Management, Schouten en Nelissen, 2003 Fast and Effective Reading, Vergouwen&Overduin, Employment History Academic Appointments 1/07-present Professor of Medical Decision Making, Leiden University Medical Center, The Netherlands Deputy Head of the Department of Medical Decision-Making 1/00-1/07 Associate Professor in Medical Decision Making, Leiden University Medical Center, The Netherlands Deputy Head of the Department of Medical Decision-Making 1/98-1/00 Senior Research Associate at the Department of Medical Decision Making, Leiden University Medical Center, The Netherlands 1/95-1/98 Research Associate at the Department of Medical Decision Making, Leiden University Medical Center, The Netherlands Prof. Stiggelbout Curriculum Vitae and List of Publications November

4 10/90-12/94 Researcher at the Leiden University Medical Center, Medical Decision Making (utility assessment and health status assessment) 1/89-08/91 Researcher at the Netherlands Cancer Institute 10/87-12/88 Trainee in Epidemiology at the International Agency for Research on Cancer, Lyons, France Spring 1987 Research Assistant at the Spring Term course in Epidemiology of the Dept. of Health Sciences at the Agricultural University Wageningen Professional Society Memberships (all full/regular membership, current only) Society for Medical Decision Making International Society for Quality of Life Research European Association for Decision Making European Association for Communication in Health Gerionne (Stichting Geriatrische Oncologie Nederland) SIOG (International Society of Geriatric Oncology) Working Party Psychosocial Oncology of the Dutch Cancer Society Netherlands Working Party for Health Status Assessment/ ISOQOL-NL Netherlands Society for Technology Assessment in Health Care Netherlands Society for Bioethics Honours and Awards External Examiner PhD-theses: S. Sivell (Cardiff University, Wales, 2013); P. Halvorsen (University of Southern Denmark, Odense, 2008) Fellowship to the 2009 Summer Institute on Informed Patient Choice ("Complexity in Decision Support / Patients' Decision Aids"), Boston, MA, june 2009 Visiting professor at the 2007 Summer Institute for Informed Patient Choice, Dartmouth Hitchcock Medical Center, June 2007 VIDI-award of the Netherlands Organisation for Scientific Research NWO Innovational Research Incentives Scheme, for a program entitled "Health state valuations: bridging the gap between the imagined and the real" 2004 The paper "Cost measurement in economic evaluations of health care: whom to ask?" (authors: Van de Brink M, Van den Hout W, Stiggelbout AM, Van de Velde CJH, Kievit J) in Med Care 2004;42: ) has received the MTA-award 2006 of the Netherlands Society for Technology Assessment in Health Care The paper "Correcting biases in standard gamble and time trade-off utilities" (authors: Van Osch SMC, Wakker PP, Van den Hout W, Stiggelbout AM, in Med Decis Making 2004;24: ) has received the MTA-award 2005 of the Netherlands Society for Technology Assessment in Health Care The paper Unstable preferences: a shift in valuation or an effect of the elicitation procedure? (authors Jansen SJT, Stiggelbout AM, Wakker PP, Nooij MA, Noordijk EM, Kievit J, in Med Decis Making 2000;20:62-71) has received three awards: Prof. Stiggelbout Curriculum Vitae and List of Publications November

5 Best Poster award of the 6ht Annual Conference of the International Society for Quality of Life Research, Barcelona, Spain, 1999 MTA-award 2002 of the Netherlands Society for Technology Assessment in Health Care Publication award for 2002 of the Decision Analysis Society of INFORMS (Institute for Operations Research and the Management Sciences) Jane Beattie Memorial Scholarship for Travel to the US, 1999 (conference grant) Expert Panel on Patient preferences 1998 (consensus project run by Prof.dr. A.M. O Connor, Canada) 4 Clinical Activities and Experience (not applicable) 5 Administrative Activities and Responsibilities Institutional Activities and Responsibilities Chair LUMC Medical Research Profile Innovation in Health Strategy and Quality of Care (2012-) Deputy-chair of the Department of Medical Decision Making, Leiden University Medical Center, The Netherlands (2000-) Member Vaste Commissie voor Wetenschapsbeoefening (VCW) LUMC Member Committee Graduate School LUMC Member NFU-Faculty Executive Master Quality and Safety of Patient Care Member Steering Committee LUMC Strategic Study Research ICT Member Extended Team Vitality Medical Delta Member of the Program Committee of the Leiden International Medical Student Conference 2011, 2013, 2015 Member/Chair of Advisory Committees LUMC Chairs (Wenselijkheids- en benoemingscommissies) Chair of the Committee on Information protection and personal data protection, Leiden University Medical Center Chair of the Academic Women s Network of the Leiden University Medical Center National and International Activities and Responsibilities National Member Commissie Bevolkingsonderzoek (Population Screening) Gezondheidsraad Member Working Group Patient Profiles in Diabetes Mellitus Type 2. Netherlands Diabetes Federation Member Advisory Committee Cancer and the Elderly Dutch Cancer Society Prof. Stiggelbout Curriculum Vitae and List of Publications November

6 Chair of the Working Party Teaching and Training, of the National Platform Shared Decision Making Member Begeleidingscommissie Kennissynthese ZonMw Wat beweegt de kiezer? Over de betekenis van weloverwogen en geïnformeerde keuzes voor gezondheid en preventie. Prof. Dr. D.R.M. Timmermans 2013 Member Klankbordgroep Wat is Goede Zorg?, Raad voor de Volksgezondheid en Zorg Member of the Privacy Committee of Dutch Hospital Data (NFU representative) Vice-chair of the subcommittee Research on Effectiveness and Efficiency, Program Prevention, The Netherlands Organisation for Health Research and Development - Medical Sciences (ZonMw) Member of the Steering Committee of the Academische Werkplaats Public Health, Northern South-Holland, research network of the LUMC and the municipal health services Member of the subcommittee Research on Effectiveness and Efficiency, Program Prevention, The Netherlands Organisation for Health Research and Development - Medical Sciences (ZonMw) Member Advisory Committee of the NWO Mozaïek Program 2006 Scientific Council for Social Oncology of the Dutch Cancer Society Chair of the National Working Party for Health Status Assessment, Organising Committee Netherlands Forum for Medical Decision Making Secretary of the Working Party for Psychosocial Oncology of the Dutch Cancer Society, Organising Committee Netherlands Working Party in Utility Assessment International Member National Advisory Committee International PsychoOncology Society World Congress 2013 ( ) President of the Society for Medical Decision Making Member Oncotyrol Center for Personalized Cancer Medicine Task Force Expert Panel 2012 Member Scientific Committee Society for Medical Decision Making-Europe 2012, 2014 Associate Editor of the journal Medical Decision Making Executive & Scientific Committee International Shared Decision Making meeting, Maastricht 2011 Program & Scientific Committee International Shared Decision Making meeting, Boston 2009 Advisory board member for the Encyclopedia of Medical Decision Making (Editor MW Kattan, Sage Reference Project, ) Vice-president of the Society for Medical Decision Making Chair Education Committee of the Society for Medical Decision Making Scientific Review Committee Society for Medical Decision Making-Europe 2006 Scientific Review Committee Society for Medical Decision Making 2006 Student prize jury European Society for Medical Decision-making 2004, 2006 Prof. Stiggelbout Curriculum Vitae and List of Publications November

7 Nominations Committee of the Society for Medical Decision-making 2004 Scientific Council for Social Oncology of the Dutch Cancer Society Awards Committee of the Society for Medical Decision-making Editorial Board of Medical Decision Making Scientific Review Committee Society for Medical Decision Making Lee Lusted Student prize jury Society for Medical Decision-making (several years between 1997 and 2005) Scientific Review Committee European Society for Medical Decision Making 2002, 2004 Education Committee of the Society for Medical Decision Making Member of the Board of Trustees, Society for Medical Decision Making International Newsletter Editor Society for Medical Decision Making List holder of the Mailing list for European members of the Society for Medical Decision Making Manuscript reviewer for: British J Cancer, British J Surgery, Canadian Medical Association J, Eur J Surgical Oncology, Eur J Cancer, Health Economics, Health Economics Letters, Health Expectations, J Behav Med, J Clinical Epidemiology, J General Internal Medicine, J Rheumatology, J Medical Ethics, Medical Decision Making, Nederlands Tijdschrift voor Geneeskunde, The Patient, Patient Education and Counselling, Pediatrics, Pharmacoeconomics, Psychology and Health, PsychoOncology, Quality of Life Research, Social Science and Medicine Grant reviewer for: Arthritis Research Campain (UK), Breast Cancer Research Campaign (UK), Cancer Research Campaign (UK), Dutch Cancer Society (Psychosocial Oncology), Dutch Health Council, Dutch Arthritis Association, Foundation for Informed Medical Decision Making (US), Netherlands Organization for Scientific Research NWO- ZONMW (Programmes Efficiency in Health Care, Prevention, and Innovational Research Incentives Scheme), NHS R&D National Coordinating Centre for Health Technology Assessment (UK), Wellcome Trust (UK) 6 Teaching Activities and Responsibilities Undergraduate level Development and teaching of the Minor Patient-empowerment: Shared Decision Making and Self-management. Curriculum Medicine LUMC Medical Decision Making and Patient Preferences. Honors Class Medicine and Biomedical Sciences Leiden University, January 2014 Development, organisation and teaching of the Module Shared decision making and risk communication. Curriculum Medicine LUMC, 2000-present (3-week full-time elective course (Keuzeblok), 2 nd year, students) Development and teaching of lectures on quality of life assessment and valuation, and on questionnaire development; in the Course Scientific skills (Practische Onderzoeks Vaardigheden). Curriculum Medicine LUMC, 2006-present (4 th year, 3 hours Prof. Stiggelbout Curriculum Vitae and List of Publications November

8 lectures) Development, organisation and teaching of the Module Quality of Life: description and valuation. Curriculum Medicine LUMC, , 2014 (1 day elective course (Keuzethema), 4 th year, 20 students) Development, organisation and teaching of the Module Questionnaire Research. Curriculum Medicine LUMC, 2011-present, (1 day elective course (Keuzethema), 4 th year, 20 students) Graduate level Development, organisation and teaching of the Module Decision-making: evidencebased medicine in practice. Curriculum Medicine LUMC, 2002-present (1/2 day, preinternship ALCO, 12 students) Shared Decision Making and End-of-Life Care. Morning in course Multimorbidity, Master Vitality and Ageing , Leiden Academy on Vitality and Ageing (with dr. N. Kerse, Auckland), February 2014 Shared Decision Making. Lecture in Executive Master in Vitality and Ageing , Leiden Academy on Vitality and Ageing, February 2014 Development, organisation and teaching of the Module Doctor-patient communication and decision-making. Curriculum Medicine LUMC, 2005-present (1/2 day, internship Centrale Onderwijs Momenten students) Judgment and decision making in medicine. Heuristics and biases. 1-hour lecture Research Master Course Cognitive Psychology, Leiden University, present Quality of life in Medicine. 2-hour Course Master Behaviour and Health, University of Amsterdam, November 2010 (40 students) Session Clinical Outcomes and Quality of Life ; in From clinical problem to successful grant application Master-+ course Leiden University Medical Center 2009-present Post-graduate level/cme Faculty Shared Decision Making and End-of-Life Care. Leiden Academy on Vitality and Ageing, Master Vitality and Ageing , February 2014 Member NFU-Faculty Executive Master Quality and Safety of Patient Care The LUMC is responsible for the Module Patient-centered medicine and patientcentered health care improvement, in this 1-year executive Master Program. Member Introduction to shared decision making and decision aids. ½ day Short Course European Association for Communication in Health. St Andrews, September 2012 Introduction to shared decision making and decision aids. ½ day Short Course Society for Medical Decision Making European meeting, Oslo June 2012 (CME) The Psychology of Decision Making: risk perception, constructing preferences and making up your mind. ½ day workshop International Shared Decision Making Conference, Maastricht, June 2011 Shared Decision Making. 2-hour lecture and debate in Executive Program Leiden Academy on Vitality and Ageing. Leiden, LAVA, February 2013 Prof. Stiggelbout Curriculum Vitae and List of Publications November

9 Omgaan met kansen: risicocommunicatie en besluitvorming 1-hour lecture in: Regionale counselingscursussen voor prenatale screening in Regio noord Zuid Holland ( Dealing with risks: risk communication and decision making Regional courses in counseling for prenatal screening in Nothern Zuid-Holland). Leiden, Boerhaave Commissie, present De patiënt helpen kiezen. ( Helping the patient decide. ) 1-hour Lecture in Continuing Medical Education Oncology for General Practitioners, Leiden, Boerhaave Commissie 2011 Shared decision making: the role of patient preferences in clinical decision making. 1-hour lecture in Coeur Research Seminar, Erasmus Medical Center Rotterdam, May 2010 Risicocommunicatie en gezamenlijke besluitvorming ( Risk communication and Shared Decision Making ). 1-hour Capitum Selectum in the European Postgraduate Gastro-Surgical- school: New Developments in Endoscopy. Amsterdam, Academic Medical Center, April 2009 Ouderen en medische beslissingen: andere rollen en voorkeuren dan jongeren? ( The elderly and medical decisions: different roles and preferences than younger patients? ). 1-hour Capitum Selectum in the Boerhaave course in Continuing Medical Education, Leiden, September 2008 Voorkeuren van patiënten voor behandelingen en uitkomsten van behandelingen: een rol in besluitvorming en therapie-evaluatie? (Patient preferences for treatments and outcomes of treatments: a role in decision-making and therapy evaluation?). 1- hour lecture in EMGO Seminar Series, april 2008 The role of patient preferences in decision making. 1-hour lecture in Seminar Department of Public Health, Erasmus Medical Center Rotterdam, February Research Main Research Themes My research focuses on two major themes. The first concerns individual patient decision making, broadly speaking the role of the patient and of his/her preferences in medical decision making. This research involves doctor-patient communication, with emphasis on risk communication, as a constituent of shared decision making. My research is both methods-focuses and implementation-focused. Further, normative and ethical aspects of medical decision making are topic of this line of research. The second theme concerns the incorporation of quality of life and preferences in meso- and macro-level decision making. This theme concerns mostly research on methods to assess quality of life and health state preferences/utilities, e.g. in cost-effectiveness analysis and health technology assessment. All of the above, as well as clinimetrics are a major part of the consultations I do for clinical departments of the LUMC. Theses (promoties) Prof. Stiggelbout Curriculum Vitae and List of Publications November

10 Promotor S. Hofstede (Orthopedic Surgery: Decision-making in elective orthopedic surgery), expected early 2016; E. Engelhardt (Medical Decision Making: Risk communication using breast cancer prediction models), expected Fall 2015; M. Kunneman (Medical Decision Making: Patient preferences in radiotherapy decisionmaking), expected Spring 2015; V. Hamelinck (Surgery: Treatment preferences of elderly breast cancer patients), expected Spring 2015; S. Rodenburg (Psychiatry: Shared decision-making in anxiety and depression), expected Spring 2015; I. Groenenberg (Public Health and Primary Care: The role of health checks in vulnerable poplulations), expected Spring 2014; M. Garvelink (Gynecology: Breast cancer patients decision-making regarding fertility preservation ), expected Spring 2014; M. Snijders (Surgery: Decision-making around colorectal surgery), expected Fall 2013 J. Vos (Clinical Genetics: Opening the psychological black box in genetic counseling ), May 2011; Y. Peeters (Medical Decision Making: Mind the gap: Explanations for the differences in utilities between respondent groups ), May 2011; J. van Til (University Twente: ; Integration of preferences in decision making - the treatment of ankle-foot impairment in stroke ), May 2009; S.M.C. van Osch (Medical Decision Making: The construction of health state utilities ), September Co-promotor: A.C. Molewijk (Medical Decision Making: Individualized evidence-based decision support and the ideal of patient autonomy in acutal medical decision making ), January 2006; M. van den Brink (Medical Decision Making: Economic evaluation of preoperative radiotherapy in rectal cancer ), June 2005; M. Visser (Neurology: The disablement process in Parkinson's disease ), November 2005; J. Marinus (Neurology: Clinimetrics in Parkinson's Disease ), June 2003; S.J.T. Jansen (Medical Decision Making: The impact of experience ), September Manuscript review committee: A. Schouffour (Rheumatology, Leiden University 2014) S. Sivell (Primary Care, Cardiff University, UK 2013) E. Fenema (Psychiatry, Leiden University 2013) A. El Barzouhi (Neurosurgery, Leiden University 2013) C. van der Hurk (Clinical Oncology, Leiden University 2013) A. Knops (Vascular Surgery, University of Amsterdam 2013) D. Twijnstra (Gynecology, Leiden University 2013) Prof. Stiggelbout Curriculum Vitae and List of Publications November

11 E. Hiemstra (Gynecology, Leiden University 2012) C. So-Osman (ImmunoHematology and Bloodtransfusion, Leiden University 2012) D. Bijlenga (Public Health, University of Amsterdam 2010) M. Koelewijn-van Loon (Primary Care, Maastricht University 2010) E. Taminiau-Bloem (Medical Psychology, University of Amsterdam 2010) E. Boormans (Gynecology, Leiden University 2010) M. Kimman (Health Economics, Maastricht University 2010) S. Keus (Neurology, Leiden University 2010) W.M.C. Klop (Otorhinolaryngology, Leiden University 2009) H. van Dongen (Gynecology, Leiden University 2009) D. Verbaan (Neurology, Leiden University 2009) SM van der Kooij (Rheumatology, Leiden University 2009) M.S. Vos (Medical Psychology, University of Amsterdam 2009) P. Voorham-v.d. Zalm (Urology, Leiden University 2008) P. Halvorsen (Health Economics, University of Southern Denmark Odense, 2008) W. Peul (Neurosurgery, Leiden University 2008) M. de Vries (Social Psychology, Nijmegen University 2008) A.J. Mol (Psychiatry, Leiden University 2007) A. Attema (ibmg, Erasmus University Rotterdam 2007) Local, National and International Research Collaborations Local: Medical Decision Making: I collaborate on grants of drs. Bodegom-Vos, Marang-van de Mheen, Pieterse, Van Den Akker -Van Marle, and Van Den Hout regarding the research themes of my chair. LUMC (other): I currently collaborate with many clinical departments regarding the research themes of my chair (Clinical Oncology, Gynecology, (ImmunoHematology and Bloodtransfusion, Neurosurgery, Obstetrics, Orthopedic Surgery, Otorhinolaryngology, Psychiatry, Public Health and Primary Care, Rehabilitation Medicine, Surgery). I am consultant to many other departments. Department of Psychology UL: collaboration in social psychology experiments with drs. Noordewier and van Putten. National: CaRe Research School (Maastricht, Nijmegen, VUMc, NIVEL): resubmission of Zwaartekracht -grant entitled: SHARED CaRe. Improving health care by combining personalised medicine with patient-centred care. (Prof. dr. O. van Schaijk, Maastricht); MUMC collaboration on grants of prof. T. Van der Weijden (Primary Care), prof. R. Kruitwagen (Gynecology) and prof. C. Dirksen (Medical Technology Assessment); Department of Medical Psychology AMC Amsterdam (Prof. dr. J.C.J.M. de Haes and dr. E. Smets). Various grants of Dutch Cancer Society and Alpes dhuzes; Consortium Making Better Decisions Together (national collaboration on the development and implementation of Decision Aids in Oncology; Alpes dhuzes); Prof. Stiggelbout Curriculum Vitae and List of Publications November

12 Collaborator on PhD-research of prof. dr. A.V. Ranchor, University Medical Center Groningen (research institute SHARE), regarding utility assessment (building on my VIDI-research); Collaborations with Erasmus Medical Center Rotterdam on: 1) VIDI-grant application and MSc research of Prof. dr. J.J.M. Takkenberg (cardiothoracic surgery); 2) fellowhip of dr. I. Korfage (Public Health); CZ-funded national project JIPPA, on the implementation of patient decision aids in prostate cancer (Tilburg University, VUMc, Radboud University); UPPER (Dept of Pharmacology Utrecht University, prof. M. Bouvy) on a shared ZonMw grant on patient preferences and experiences with medications (completed January 2013) International: Prof. dr. D. Alden (University of Hawaii) and Prof.dr. M. Schapira (Penn University): cultural aspects of patient decision aids (workshops, paper submitted) Oncotyrol Taskforce on personalized medicine (partner in international research consortium funded by Austrian Government and Pharma; Chair: prof.dr. U. Siebert, UMIT, Hall, Austria) IPDAS: International Patient Decision Aids Standardization, an international expert collaboration. Part of writing group of the updated background document ( ) Dr. H.L. Bekker (Leeds University UK): collaborator on grant of the Foundation for Informed Medical Decision Making Grant Support Grants (Principle Investigator/Applicant) current On-going Pieterse AH, Stiggelbout AM, Van der Weijden T. Developing and validating measures for Shared Decision Making in Oncology (Dutch Cancer Society UL ) Liefers GJ, Stiggelbout AM, Van de Velde CJH. Elderly patients preferences for early stage breast cancer treatment. (Pink Ribbon; WO ( )) Liefers GJ, Stiggelbout AM, Van de Velde CJH. Climb every mountain - physical exercise in elderly breast cancer survivors. (Alpes d Huzes/Dutch Cancer Society; UL ( ) Stiggelbout AM, Van den Hout WB. Development and validation of a functioning scale for Cervical Radicular Syndrome (ZonMW ( )) Stiggelbout AM, De Haes JCJM, Nortier JWR. Communicating risk from prediction models in the clinical encounter (Dutch Cancer Society UL ( )) Prof. Stiggelbout Curriculum Vitae and List of Publications November

13 Peeters Y, Stiggelbout AM, Van den Hout WB. Web-based time trade-off incorporating interviewer help: efficiency with validity. (ZonMw ( )) Ter Kuile, Stiggelbout, Kenter. Sexual complaints in female cancer survivors: Is there a need for treatment? (Alpes d Huzes/Dutch Cancer Society; UL ( )) Pieterse AH, Stiggelbout AM, Marijnen CAM. Tailored patient values elicitation task for rectal cancer treatment decision-making ((Dutch Cancer Society UL ; ) Hilders CGJM (Nortier JWM, Stiggelbout AM, Ter Kuile MM). A decision aid for fertility preservation for young women with breast cancer: a randomized multi-center controlled trial (DSW Healthcare / Pink Ribbon; ) Stiggelbout AM, Assendelft WJJ, Maes S. Health checks in vulnerable groups: the role of beliefs and expectations. (Collaborating Dutch Health Funds Program Lekker Lang Leven ) Grants (Principle Investigator/Applicant) completed Bekker HL. Identifying components of decision aid interventions that enable informed decision making about dialysis modality. (Foundation for Informed Medical Decision Making (US) ) Hilders, ter Kuile, Stiggelbout, Louwe (LUMC), van Dulmen, van den Berg, Overbeek (VUMC). Knowledge, attitudes and practices regarding fertility preservation in young females with cancer. (DSW Healthcare 2011) HL Bekker, AM Stiggelbout. Grant-in-aid for the workshop The use of Quality of Life as a decision aid in doctor-patient decision making in oncology (British Council - NWO Partnership Programme in Science 2006) Van Hilten JJ, Stiggelbout AM. SCOPA-PROPARK (Leiden University Medical Center Grant) Van Hilten JJ, Stiggelbout AM. Clinical expression profiling of patients with Parkinson s disease. (Prinses Beatrix Fonds MAR ; ) ,- Van Hilten JJ. Quality of life in Parkinson's Disease. (Foundation Nuts-Ohra ) Stiggelbout AM, Marijnen CAM, Van de Velde CJH. Decision making in rectal cancer: the costs and benefits of preoperative radiotherapy (Dutch Cancer Society UL ; ) Marijnen CAM, Stiggelbout AM, Van de Velde CJH. A decision tool to help patients to determine their preference for the type of surgery in rectal cancer: permanent stoma or low anterior resection (MLDS-Dutch Gastrointestinal Disease Society SWO 04-06; ) Stiggelbout AM. The consequences of (treatment for) rectal cancer for quality of life and societal participation (MLDS-Dutch Gastrointestinal Disease Society SWO 02-15; ) Stiggelbout AM. Medical Information on the Internet: normativity of medical information and the transformation of the clinical consultation. (Netherlands Prof. Stiggelbout Curriculum Vitae and List of Publications November

14 Organization for Scientific Research NWO - Ethics and Policy ; ) Stiggelbout AM. The construction of health state utilities. (Netherlands Organization for Scientific Research NWO ; ) Kievit J, Stiggelbout AM, Otten W. Evidence-based decision support for surgeon and patient: the effect of individualized risk-information on decision-making in abdominal aneurysms. VAZ Efficiency Program Stiggelbout AM, Otten W, Van de Velde CJH. Adjuvant chemotherapy for rectal cancer: patients considerations and preferences (Dutch Cancer Society; RUL ) Van Hilten JJ, Stiggelbout AM. The assessment of the disablement process in Parkinson s Disease (Netherlands Organization for Scientific Research NWO - Chronic Diseases - Neurological and Psychiatric Disorders; ; ) Kievit J. Decision making in life-threatening disease: the meaning of information for the patient s autonomy (Netherlands Organization for Scientific Research NWO - Ethics and Policy; ; ) Stiggelbout AM, Kievit J, Nooy MA. Stability of patient preferences: do utilities for breast cancer treatment change as a result of experience with the treatment? (Dutch Cancer Society; RUL ; ) Grants (collaborator/consultant) current De Vries M. et al. De patiënt centraal bij de behandelkeuze voor prostaatkanker. CZ Fonds Bodegom-Vos L. Designing a strategy to implement shared decision making regarding prolonged conservative or surgical treatment for patients with lumbosacral radicular syndrome (LRS). (ZonMw ) Dirksen CD, et al. Integrating evidence on patient preferences in health care policy decisions: are we up for it? (ZonMw ) Vleggeert-Lankamp CLAM, et al. Effectiveness of surgery versus prolonged conservative care in patients suffering from a herniated cervical disc: a prospective randomized controlled trial (ZonMw ) De Vries M, Van den Akker-van Marle ME, et al. Measuring the effects of health interventions on subjective well-being comprehensively: The development and validation of the SWB-xD (ZonMw ) Van den Akker-van Marle ME et al. Development and validation of a delivery outcome measure (ZonMw ) Van den Akker-van Marle ME et al. Further exploration of the appropriateness of the well-being valuation method for monetary valuation of informal care: what is measured? (ZonMw ) Grants (collaborator/consultant) completed Van den Akker-van Marle ME, et al. Societal preferences for basic health insurance in the Netherlands. (ZonMw ) Prof. Stiggelbout Curriculum Vitae and List of Publications November

15 Van den Hout WB et al. The marginal utility of health: direct and indirect valuation of EQ5D differences. (ZonMw ) Marang-van de Mheen PJ. Lange termijn gevolgen van levende nierdonatie voor donor en ontvanger: effecten op kwaliteit van leven, gezondheid, maatschappelijke participatie en de donor-ontvanger relatie (Nierstichting Nederland ) Van de Velde, Kievit, Hille. Feasibility of tailored follow-up for patients with breast cancer: a pilot-implementation (KWF: UL ; , co-applicant) Van der Weijden et al. Facilitating patient involvement in decision making based on clinical practice guidelines. How to integrate individual patient preferences in clinical practice guidelines? (ZonMw ) Col NF. Incorporating Temporary Health States into Decision Support: Women s Interactive System for Decisions on Menopause a Practical Approach to Temporary Health States (WISDOM + PATHS) (Agency for Health Care Research and Quality 2 R01 HS A ) consultant Kievit J. Assessing costs in cost-effectiveness studies: how should we measure volumes of care utilization and whom should we ask? A comparison of different measurement methods. (Netherlands Organization for Scientific Research NWO, Programme Efficiency in Health Care- Top down , ) Invited Lectures Local Shared Decision Making. Symposium Nephrogeriatric Care. LUMC, February Shared Decision Making. Lecture Regional meeting Care for the Elderly, Leiden, May 2013 Beroepshalve beslissen onder onzekerheid: Grote kans op slechte keuzes? ( Professional decision-making under uncertainty: large chances of poor choices? ). Panel discussion Studium Generale Leiden University, October 2010 Beslissen en beoordelen in de Geneeskunde ( Decision-making and judgment in medicine ). Lecture Studium Generale Leiden University, October 2010 Medische Besliskunde: het meten van kwaliteit van leven en patiënt preferenties ( Medical Decision Making: the measurement of quality of life and patient preferences ). Seminar Ophtalmology, Leiden University Medical Center, January 2010 Medische Besliskunde: het meten van kwaliteit van leven en patiënt preferenties ( Medical Decision Making: the measurement of quality of life and patient preferences ). Grand Rounds Pediatrics, Leiden University Medical Center, August 2009 De glazen plafond dames: hoognodig? Lecture at the farewell symposium of Prof. dr. G. Kenter, vice-chair of the LUMC Academic Women s Network Vitaal Prof. Stiggelbout Curriculum Vitae and List of Publications November

16 Willens en wetens: laten we de patiënt beslissen? ( Knowingly and willfully: do we let the patient decide? ). Lecture at the farewell symposium of prof. dr. E. Noordijk, Chairman of the Department of Radiation Oncology, LUMC, June 2009 Ouderen en medische beslissingen: andere rollen en voorkeuren dan jongeren? ( The elderly and medical decisions: different roles and preferences than younger patients? ). Capitum Selectum in Boerhaave Continuing Medical Education, Leiden, September 2008 "Kwaliteit van leven meting in de urologie: meten is weten" ( Quality of life measurement in urology: to measure is to know ). Lecture at the Regional Urology Seminar series, LUMC October 2006 National Shared Decision Making. Lecture CME in Otolaryngology, Garderen, Preferrences? What preferences?. Lecture Netherlands Cobradagen 2014 (Bi-annual gynaecological surgery conference). Noordwijkerhout, April 2014 The patient as partner in Care. Plenary lecture 20 th Conference of the Netherlands Society for Psychosocial Oncology. Utrecht, March Shared Decision Making. Lecture and debate Regional CME meeting in Obstetrics. Utrecht University Medical Center, January 2013 Betere kwaliteit voor gezamenlijke besluitvorming? ( Better quality through Shared Decision Making? ). Lecture 3 rd Conference IQ Health Care Nijmegen, September 2012 Gezamenlijke Besluitvorming en Keuzehulpen. ( Shared Decision Making and Decision Aids ). ZonMw Prioritization Meeting Prostate Cancer Screening. The Hague, May The Salzburg Statement: Maastricht Manifest. Lecture at the Startup Symposium of the Netherlands Platform for Shared Decision Making, Maastricht, June 2011 Besluit tot operatie: wat wil de patient? ( Decision to operate: what does the patient want? ). Symposium Aneurysms of the Abdominal Aorta, Leiden, Boerhaave Commissie September 2009 Patient preferences and treatment decision-making: the role of anticipated and actual adaptation. Symposium Inspiring talks on adaptation to disease, on the occasion of the Inaugural Lecture of Prof. A. Ranchor, Groningen University, June 2008 De rol van de patient in de besluitvorming ( The role of the patient in decisionmaking ). Lecture at the Care Forum of the Netherlands Health Care Insurance Board (CVZ). Diemen, June 2008 International Shared Decision Making. Plenary Lecture European Association for Communication in Health. Amsterdam, September 2014 Introduction to shared decision making and patient decision aids. Professional Updates Saw Swee Hock School of Public Health, Singapore, January 2014 Shared Decision Making. Lecture 19e Nederlands/Vlaams Doelencongres Infertiliteit, Gynaecologie en Obstetrie. Rotterdam, April 2013 Shared decision making and risk communication: Concepts and Theories. Lecture Prof. Stiggelbout Curriculum Vitae and List of Publications November

17 Salzburg Global Seminar, Salzburg, December 2010 Medical decision-making and preference assessment. Lecture at the Center for Outcomes Research and Evaluation, Maine Medical Center, Portland, ME, July 2008 Medical decision-making: a description of the field with an emphasis on utility assessment. Lecture at Maine Medical Center, Portland, ME, July 2008 Medical decision-making: a description of the field with an emphasis on utility assessment. Seminar Decision Sciences Group at Brown University, Rhode Island, October 2006 Session chair and workshop chair (invited): Introduction to Shared Decision Making Communications and Decision Support Technologies in Diverse Cultural Environments. Short Course Society for Medical Decision Making Asia-Pacific Meeting, Singapore, January 2014 Chair Plenary Session Developing and Implementing Effective Models of Patient Centered Care in the Culturaly Divese and/or Resource Challenged Environments of the Asia-Pacific Region. Society for Medical Decision Making Asia-Pacific Meeting, Singapore, January 2014 Patient als partner, voor betere kwaliteit. ( Patient as partner, for higher quality ). Panel-member Parallel session 3rd Conference IQ-Healthcare, Nijmegen, September 2012 Shared Decision Making: de professional van Bestuurder tot Bijrijder? ( Shared Decision Making: the professional from the driver s to the passenger s seat? ) Panellid Parallelsessie Zorgmarkt Jaarcongres, Papendal Juni 2012 Values, preference elicitation and utility assessment, Society for Medical Decision Making, Chicago 2011 Progress and Prospects in SDM, Opening Plenary Session, International Shared Decision Making Meeting, Maastricht 2011 Risk Communication, Society for Medical Decision Making, Toronto 2010 Shared Decision Making in Primary Care, International Shared Decision Making Meeting, Boston 2009 Informed decision making interventions: a focus on values clarification methods. Symposium at the International Conference on Communication in Health Care (EACH), Oslo, September 2008 How to shape patient informed decision making: theory, ethics, implementation, and evaluation. Roundtable Conference Psychology and Health, Lunteren, May 2008 Shared Decision-Making: SMDM-Europe, Birmingham List of Publications Peer-reviewed journal articles (by year) Prof. Stiggelbout Curriculum Vitae and List of Publications November

18 Alden D, Friend J, Shapira M, Stiggelbout AM. Cultural Targeting and Tailoring of Shared Decision Making Technology: A Theoretical Framework for Improving the Effectiveness of Patient Decision Aids in Culturally Diverse Groups. Soc Sci Med. 2014;105C:1-8 Edelaar-Peeters Y, Stiggelbout AM, Van Den Hout WB. Qualitative and Quantitative Analysis of Interviewer Help Answering the Time Tradeoff. Med Decis Making Mar 25. [Epub ahead of print] Engelhardt EG, Garvelink MM, de Haes JH, van der Hoeven JJ, Smets EM, Pieterse AH, Stiggelbout AM. Predicting and communicating the risk of recurrence and death in women with early-stage breast cancer: a systematic review of risk prediction models. J Clin Oncol. 2014;32: Gärtner FR, Freeman LM, Rijnders ME, Middeldorp JM, Bloemenkamp KWM, Stiggelbout AM, Van den Akker-van Marle ME. A comprehensive representation of the birth-experience: identification and prioritization of birth-specific domains based on a mixed-method design. BMC Pregnancy and Childbirth 2014, 14:147 doi: / Snijders HS, Kunneman M, Bonsing BA, de Vries AC, Tollenaar RA, Pieterse AH, Stiggelbout AM. Preoperative risk information and patient involvement in surgical treatment for rectal and sigmoid cancer. Colorectal Dis. 2014;16:O43-9 Wouters H, Van Dijk L, Van Geffen EC, Gardarsdottir H, Stiggelbout AM, Bouvy ML. Primarycare patients' trade-off preferences with regard to antidepressants. Psychol Med Jan 7:1-8. [Epub ahead of print] Wouters H, Bouvy ML, Van Geffen EC, Gardarsdottir H, Stiggelbout AM, Van Dijk L. Antidepressants in primary care: patients' experiences, perceptions, self-efficacy beliefs, and nonadherence. Patient Prefer Adherence. 2014; 8: Blikkendaal MD, Twijnstra AR, Stiggelbout AM, Beerlage HP, Bemelman WA, Jansen FW. Achieving consensus on the definition of conversion to laparotomy: a Delphi study among general surgeons, gynecologists, and urologists. Surg Endosc. 2013;27: Brand PL, Stiggelbout AM. Effective follow-up consultations: the importance of patient-centered communication and shared decision making. Paediatr Respir Rev. 2013; 14:224-8 De Groot IB, Veen JI, van der Boog PJ, van Dijk S, Stiggelbout AM, Marang-van de Mheen PJ; The PARTNER-study group. Difference in quality of life, fatigue and societal participation between living and deceased donor kidney transplant recipients. Clin Transplant 2013;27: E Dirksen CD, Utens CM, Joore MA, van Barneveld TA, Boer B, Dreesens DH, van Laarhoven H, Smit C, Stiggelbout AM, van der Weijden T. Integrating evidence on patient preferences in gealthcare policy decisions: protocol of the patient-vip study. Implement Sci Jun 10;8:64 Edelaar-Peeters Y, Stiggelbout AM. Anticipated adaptation or scale recalibration? Health Qual Life Outcomes. 2013;11:171 Prof. Stiggelbout Curriculum Vitae and List of Publications November

19 Fagerlin A, Pignone M, Abhyankar P, Col NC, Feldman-Stewart D, Gavaruzzi T, Kryworuchko J, Levin C, Pieterse AH, Reyna V, Stiggelbout AM, Scherer L, Wills C. Clarifying and Expressing Values: An updated review. BMC Med Inf Decis Making 2013 (accepted) Garvelink MM, Ter Kuile MM, Bakker RM, Geense WJ, Jenninga E, Louwé LA, Hilders CG, Stiggelbout AM. Women's experiences with information provision and deciding about fertility preservation in the Netherlands: 'satisfaction in general, but unmet needs'. Health Expect May 5. doi: /hex [Epub ahead of print] Garvelink MM, Ter Kuile MM, Fischer MJ, Louwé LA, Hilders CG, Kroep JR, Stiggelbout AM. Development of a Decision Aid about fertility preservation for women with breast cancer in the Netherlands. J Psychosom Obstet Gynaecol. 2013;34:170-8 Garvelink MM, Ter Kuile MM, Hilders CG, Stiggelbout AM, Louwé LA. Fertiliteitspreservatie voor chemotherapie [Fertility preservation before chemotherapy]. Ned Tijdschr Oncol 2013; 10: Hiemstra E, Schreuder HWR, Stiggelbout AM, Jansen FW. Grading surgical skills curricula and training facilities for minimally invasive surgery. Gynecol Surg 2013; 10:63-9 Hofstede SN, Marang-van de Mheen PJ, Wentink MM, Stiggelbout AM, Vleggeert-Lankamp CL, Vliet Vlieland TP, van Bodegom-Vos L; DISC study group. Barriers and facilitators to implement shared decision making in multidisciplinary sciatica care: a qualitative study. Implement Sci. 2013;8:95. doi: / Louwé LA, Ter Kuile MM, Hilders CGJM, Jenninga E ( ),Tiemessen SM, Peters AAW, Nortier JWR, Stiggelbout AM. Oncologists practice and attitudes regarding fertility preservation in female cancer patients: a pilot study in the Netherlands (accepted) Pieterse AH, de Vries M, Kunneman M, Stiggelbout AM, Feldman-Stewart D. Theory-informed design of values clarification methods: a cognitive psychological perspective on patient healthrelated decision making. Soc Sci Med Jan;77: Politi MC, Dizon DS, Frosch DL, Kuzemchak MD, Stiggelbout AM. Importance of clarifying patients' desired role in shared decision making to match their level of engagement with their preferences. BMJ. 2013;347:f7066. doi: /bmj.f7066. Snijders HS, Kunneman M, Bonsing BA, de Vries AC, Tollenaar RA, Pieterse AH, Stiggelbout AM. Preoperative risk information and patient involvement in surgical treatment for rectal and sigmoid cancer. Colorectal Dis Nov 5. doi: /codi So-Osman C, Nelissen R, Brand R, Faber F, Te Slaa R, Stiggelbout AM, Brand A.. The impact of a restrictive transfusion trigger on post-operative complication rate and well-being following elective orthopedic surgery: a post-hoc analysis of a randomized study. Blood Transfus. 2013; 11: Van der Weijden T, Pieterse AH, Koelewijn-van Loon MS, Knaapen L, Légaré F, Boivin A, Burgers JS, Stiggelbout AM, Faber M, Elwyn G. How can clinical practice guidelines be adapted to facilitate shared decision making? A qualitative key-informant study. BMJ Qual Saf. 2013; 22: Prof. Stiggelbout Curriculum Vitae and List of Publications November

20 Vos J, Menko FH, Oosterwijk JC, van Asperen CJ, Stiggelbout AM, Tibben A. Genetic counseling does not fulfill the counselees' need for certainty in hereditary breast/ovarian cancer families: an explorative assessment. Psychooncology 2013;22: Wouters H, van Geffen EC, Baas-Thijssen MC, Krol-Warmerdam EM, Stiggelbout AM, Belitser S, Bouvy ML, van Dijk L. Disentangling breast cancer patients' perceptions and experiences with regard to endocrine therapy: Nature and relevance for non-adherence. Breast. 2013;22:661-6 Wouters H, Maatman GA, Van Dijk L, Bouvy ML, Vree R, Van Geffen EC, Nortier JW, Stiggelbout AM. Trade-off preferences regarding adjuvant endocrine therapy among women with estrogen receptor-positive breast cancer. Ann Oncol. 2013;24: Prof. Stiggelbout Curriculum Vitae and List of Publications November

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