Development and preliminary evaluation of a clinical guidance programme for the decision about prophylactic oophorectomy in women undergoing a hysterectomy

Objectives: To develop a decision analysis based and computerised clinical guidance programme (CGP) that provides patient specific guidance on the decision whether or not to undergo a prophylactic oophorectomy to reduce the risk of subsequent ovarian cancer and to undertake a preliminary pilot and evaluation. Subjects: Women who had already agreed to have a hysterectomy who otherwise had no ovarian pathology. Setting: Oophorectomy decision consultation at the outpatient or pre-admission clinic. Methods: A CGP was developed with advice from gynaecologists and patient groups, incorporating a set of Markov models within a decision analytical framework to evaluate the benefits of undergoing a prophylactic oophorectomy or not on the basis of quality adjusted life expectancy, life expectancy, and for varying durations of hormone replacement therapy. Sensitivity analysis and preliminary testing of the CGP were undertaken to compare its overall performance with established guidelines and practice. A small convenience sample of women invited to use the CGP were interviewed, the interviews were taped and transcribed, and a thematic analysis was undertaken. Results: The run time of the programme was 20 minutes, depending on the use of opt outs to default values. The CGP functioned well in preliminary testing. Women were able to use the programme and expressed overall satisfaction with it. Some had reservations about the computerised format and some were surprised at the specificity of the guidance given. Conclusions: A CGP can be developed for a complex healthcare decision. It can give evidence-based health guidance which can be adjusted to account for individual risk factors and reflects a patient's own values and preferences concerning health outcomes. Future decision aids and support systems need to be developed and evaluated in a way which takes account of the variation in patients' preferences for inclusion in the decision making process.

[1]  E. Emanuel,et al.  Four models of the physician-patient relationship. , 1992, JAMA.

[2]  L Doyal,et al.  Informed consent: moral necessity or illusion? , 2001, Quality in health care : QHC.

[3]  G. Elwyn,et al.  Towards a feasible model for shared decision making: focus group study with general practice registrars , 1999, BMJ.

[4]  H. Sutherland.  Assessing patients' preferences. , 1995, Medical decision making : an international journal of the Society for Medical Decision Making.

[5]  J. Dowie,et al.  ‘Evidence-based’, ‘Cost-Effective’ and ‘Preference-Driven’ Medicine: Decision Analysis Based Medical Decision Making is the Pre-Requisite , 1996, Journal of health services research & policy.

[6]  R. Estape,et al.  Ovarian Cancer in Women With Prior Hysterectomy: A 14-Year Experience at the University of Miami , 1991, Obstetrics and gynecology.

[7]  A. Farmer,et al.  Using interactive videos in general practice to inform patients about treatment choices: a pilot study. , 1995, Family practice.

[8]  Harold C. Sox,et al.  Variation in Patient Utilities for Outcomes of the Management of Chronic Stable Angina: Implications for Clinical Practice Guidelines , 1995 .

[9]  K M Kuntz,et al.  Decision analysis--effects of prophylactic mastectomy and oophorectomy on life expectancy among women with BRCA1 or BRCA2 mutations. , 1997, The New England journal of medicine.

[10]  A Coulter,et al.  Partnerships with Patients: The Pros and Cons of Shared Clinical Decision-Making , 1997, Journal of health services research & policy.

[11]  A. Williams.  EuroQol : a new facility for the measurement of health-related quality of life , 1990 .

[12]  Sutherland Hj.  Assessing Patients' Preferences , 1995 .

[13]  V. Entwistle,et al.  Decision aids for patients facing health treatment or screening decisions: systematic review , 1999, BMJ.

[14]  J G Dolan.  Can decision analysis adequately represent clinical problems? , 1990, Journal of clinical epidemiology.

[15]  N V Dawson,et al.  A risk-benefit analysis of elective bilateral oophorectomy: effect of changes in compliance with estrogen therapy on outcome. , 1991, American journal of obstetrics and gynecology.

[16]  Angela Robinson,et al.  Development and description of a decision analysis based decision support tool for stroke prevention in atrial fibrillation , 2002, Quality & safety in health care.

[17]  D. Pryor,et al.  Variation in patient utilities for outcomes of the management of chronic stable angina. Implications for clinical practice guidelines. Ischemic Heart Disease Patient Outcomes Research Team. , 1995, JAMA.

[18]  C. Palmer,et al.  Differences in mortality after fracture of hip: the East Anglian audit , 1995, British medical journal.

[19]  Glyn Elwyn,et al.  Evidence-based patient choice? , 2001 .

[20]  K. Meadows,et al.  The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: a literature review. , 1999, Journal of evaluation in clinical practice.

[21]  G. Chapman,et al.  Decision Making in Health Care: Theory, Psychology, and Applications , 2003 .

[22]  P. Dolan,et al.  Modeling valuations for EuroQol health states. , 1997, Medical care.

[23]  A. Kasuya.  EuroQol--a new facility for the measurement of health-related quality of life. , 1990, Health policy.

[24]  D A Bloch,et al.  Capturing the patient's view of change as a clinical outcome measure. , 1999, JAMA.

[25]  C. Tropé,et al.  Some aspects of prophylactic oophorectomy and ovarian carcinoma. , 1981, Annales chirurgiae et gynaecologiae.

[26]  W Lorenz,et al.  Optimal Methods for Guideline Implementation: Conclusions From Leeds Castle Meeting , 2001, Medical care.

[27]  T. Fahey,et al.  How do patients' treatment preferences compare with those of clinicians? , 2001, Quality in health care : QHC.

[28]  A. Neugut,et al.  Decision analysis of prophylactic mastectomy and oophorectomy in BRCA1-positive or BRCA2-positive patients. , 1998, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[29]  James G. Dolant.  Can decision analysis adequately represent clinical problems , 1990 .

[30]  L. Lenert,et al.  Incorporating Risk Attitude into Markov-process Decision Models: , 1997, Medical decision making : an international journal of the Society for Medical Decision Making.

[31]  What do we mean by appropriate health care? Report of a working group prepared for the Director of Research and Development of the NHS Management Executive. , 1993, Quality in health care : QHC.

[32]  G. Elwyn,et al.  Shared decision-making in primary care: the neglected second half of the consultation. , 1999, The British journal of general practice : the journal of the Royal College of General Practitioners.