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Article: Patients' preference for involvement in medical decision making: A narrative review
Authors: Say, R;Murtagh, M;Thomson, R
Journal: PATIENT EDUC COUNS, 60 (2): 102-114 FEB 2006
Addresses: Univ Newcastle Upon Tyne, Sch Med, Sch Populat & Hlth Sci, Framlington Pl, Newcastle Upon Tyne NE2 4HH, Tyne & Wear, England.
Univ Newcastle Upon Tyne, Sch Med, Sch Populat & Hlth Sci, Newcastle Upon Tyne NE2 4HH, Tyne & Wear, England.

 Why do you think your paper is highly cited?

It is commonly the case that there is more than one option for treating a particular condition or problem, with different options having different risks and benefits. The choice between options may thus be sensitive to patient preferences. A good example is the choice that women with breast cancer may face between mastectomy and breast-conserving surgery.

Modern healthcare is increasingly moving towards engaging patients in decisions about their own treatment, where such preference-based choices exist. However, engaging patients in such decisions is challenging for both clinicians and patients. In fact, patients themselves vary in their desire for involvement in treatment decisions; some wish to be actively involved, others prefer to leave the decision to their doctor.

 Does it describe a new discovery, methodology, or synthesis of knowledge? 

"...one of the biggest challenges is the implementation of shared decision-making and decision support in routine practice, appropriate to the particular decision."

Before our review of the literature, studies undertaken across the world which sought to understand the factors that influence patients' preferences for being engaged in decision-making had not been systematically reviewed and summarized. This systematic review included analyses of both quantitative and qualitative studies in order to summarize the key features associated with patients' desire to engage in treatment decisions. 

In all, from an extensive literature search, 33 studies were included in the review, covering a wide range of patient groups and clinical settings, from patients in primary care through to patients with specific diagnoses such as cancer.

 Would you summarize the significance of your paper in layman's terms?

We have demonstrated that there are several key patient factors that are consistently associated with patients' desire to participate in their own treatment decisions. Younger, better-educated patients and women generally prefer a more active role in decision-making than older, less educated patients and men. In addition, patients' desire to be involved in treatment decisions may develop and change over time as they proceed through their illness.

Features associated with the type of decision and of illness are also likely to be important. For example, it may be more difficult for patients to be involved in making decisions about illnesses with which they are unfamiliar. Furthermore, past experience of health care and the relationship of the patient with their clinician are important, although it is unclear whether the decision-making style of clinicians affects patients' preferences or whether patients actually seek out clinicians whose style matches their own preference.

Overall, there is a wide distribution of patient desire for engagement in treatment decisions and it is important that clinicians are sensitive to this. Even if certain types of people or certain types of decisions are associated with less desire for engagement, there will still be some patients in this situation who wish to be actively engaged. The only way this can truly be assessed is if clinicians and patients explore these preferences at an early stage, such that patients can be offered appropriate engagement, and this should be kept under review in case the situation changes.

 How did you become involved in this research and were any particular problems encountered along the way?

I became involved in risk communication research and patient decision-making as a result of research into decisions about patients with atrial fibrillation—irregular heart beat—who are at an increased risk of stroke. We sought to develop guidelines that incorporated patient perspectives. However, as we worked through this, it became clear that the best way to decide on appropriate treatment for a patient where there are real choices between alternative treatments could only be achieved by truly engaging the patient. 

This is complex and requires an understanding of how to communicate risk and how to ensure that a patient is well-informed, that their values and preferences are explored, and that they are able to make a decision that is consistent with their values and preferences. From that initial interest has grown a program of work which focuses on risk communication and shared decision-making in Newcastle.

 Where do you see your research leading in the future?

"A good example is the choice that women with breast cancer may face between mastectomy and breast-conserving surgery.."

There is a strong evidence base that patients who are supported with patient decision aids are better informed; more likely to engage in decisions, more satisfied with their decisions, more likely to make decisions consistent with their values and more likely to comply with any treatment decisions made. Engagement of patients more widely in their care leads to better outcomes. Despite this evidence, true patient engagement in decision-making remains limited and unsupported in practice.

Hence, one of the biggest challenges is the implementation of shared decision-making and decision support in routine practice, appropriate to the particular decision. This requires research to understand the factors that influence this implementation and it also requires research into shared decision-making in day to day practice. We are seeking first to understand the nature of decision-making where patients have treatment choices, such that appropriate decision support can be developed and provided, as well as developing research into how best to support implementation in actual practice.

 Do you foresee any social or political implications for your research?

Key international commentators and experts in the field have pointed out that there is a shifting policy and research framework that is bringing shared decision-making and patient engagement to the fore in modern health services. They have described a "tipping point" which might facilitate wider acceptance and implementation of shared decision making in day to day practice (O’Connor, A.M., et al., "Toward The ‘Tipping Point’: Decision Aids And Informed Patient Choice," Health Affairs 26: 716-25, 2007). At the same time, healthcare services are increasingly developing such policy; for example, the NHS in the UK has recently restated its constitution including a commitment to engaging patients in decisions.

Richard Thomson
Professor of Epidemiology and Public Health
Institute of Health and Society
Medical School
University of Newcastle upon Tyne
Newcastle upon Tyne, UK
Web

KEYWORDS: CANCER-PATIENTS; BREAST-CANCER; HEALTH-CARE; PROSTATE-CANCER; INFORMATION-SEEKING; PATIENTS DESIRE; PATIENTS WANT; PATIENTS WISH; PARTICIPATION; AUTONOMY.

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2009 : May 2009 - Fast Moving Fronts : Richard Thomson
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