Preferences for involvement in treatment decision making of patients with cancer: A review of the literature

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Summary

A systematic review of the literature about patients’ preferences for involvement in cancer treatment decision making was conducted. Establishing preferences is important if the aim is to make health care more sensitive to the needs and expectations of each individual patient. Thirty-one papers were included in the review. Generalising from this literature is problematic because of limitations related to sample size, sample composition and methods used to assess preferences. Whilst we take cognizance of these limitations, research suggests that preferences vary considerably and that whilst most patients prefer a collaborative role, a significant minority prefer a passive or active role. Evidence about the association of factors such as age, gender, level of education, marital status, socio-economic status and health status with preferences is inconclusive. Only a handful of studies investigated the degree of congruence between patients’ role preferences and the actual role that they perceived they had played, which highlight that some patients experience a dissonance between the two. Similarly, few studies investigated the impact of this dissonance on patient anxiety or satisfaction with the treatment decision. We advocate more rigorous investigations before recommendations for health care professionals can be processed with confidence.

Introduction

Health and social care policy promotes the agenda of involvement by encouraging patients, careers and members of the public to adopt a greater level of responsibility for and participation in health care, including, playing a much greater role in decisions affecting their own treatment and care (Department of Health, 2003). Medical ethics has emphasised the right of patients to be fully informed and to participate in treatment decision making, which is legislated for in some countries (Guadagnoli and Ward, 1998). The recent emphasis on patient involvement and autonomy in health care settings is indicative of efforts to promote a move away from a paternalistic form of care towards one of partnership between the medical profession and patients. This, in turn, reflects wider cultural tendencies that position patients as active consumers and citizens involved in making health care decisions.

There is a wealth of evidence related to treatment decision making for patients with cancer. This includes a significant amount of research about the use of decision aids (Caress, 2000) to facilitate decision making, but also a small but growing amount of literature related to other aspects of treatment decision making including research about the influence of patient involvement in treatment decision making on quality of life (Andersen and Urban, 1999), the impact of the media on treatment decision making (Passalacqu et al., 2004), the relationship of depression and anxiety to treatment decision making (Petersen et al., 2003), how married couples interact in reaching a treatment decision (Boehmer and Clark, 2001), patients’ attitudes towards different treatment options (Brundage et al., 2001), decisional regret (Davison and Goldenberg, 2003), decision making in palliative care treatment (De Haes and Koedoot, 2003) and preferences for different types of treatment (Soloman et al., 2003).

Researchers have also investigated patients’ preferences for involvement in treatment decision making. Establishing preferences for involvement in treatment decision making is important if the aim is to make health care more sensitive to the needs and expectations of each individual patient. Since patients are not a homogenous group, it cannot be assumed that they will all want to play an active or collaborative role in making decisions about their care. Thus, a shared decision-making process with doctors and patients involved in treatment decision making may be too simplistic of a model. This is why the process of health care professionals systematically finding out about patient preferences in relation to involvement in treatment decision making is seen as crucial.

As part of a larger systematic review of literature about the agenda of involvement in cancer care, a review of research about patients’ preferences for involvement in treatment decision making was conducted (Hubbard et al., 2007). The review aimed to improve understanding of the role that patients with cancer want in relation to their treatment decision making, socio-demographic factors that influence role preference, the degree of congruence between patients’ preferred and actual roles in treatment decision making, and the impact of role preferences on outcomes, such as patient satisfaction.

Section snippets

Type of review

This review was carried out using systematic methods to produce a narrative summary. We used systematic methods to search for literature, applied inclusion and exclusion criteria, appraised the quality of studies included, selected relevant data from the included studies for analysis and provided a narrative summary of these data.

Searching for literature

All database searches ran from 1994 to 2004 inclusive. No language, geographical or methodological limits, was imposed on the results. The majority of hits were

Results

A total of 31 papers were included (26 from electronic database searches and 5 from cited references or journal searches), all of which received the highest quality appraisal rating. No literature reviews were found, thus all papers included in the review are research studies. Table 1 summarises the method employed, sample chosen and the key findings for each paper.

Methodological concerns

Despite the growing abundance of research in relation to preferences for involvement in treatment decision making amongst patients with cancer, there are a number of methodological limitations of this body of work worth noting. In particular, generalising from the 31 studies included in this review is problematic because of small sample sizes, the inability to decipher from reading these papers whether or not the sample is representative of a wider population and the wide variation in the

Conclusions

Changes in societal attitudes towards patient involvement in treatment decision making coupled with a much more consumerist and citizenship approach to health care is likely to affect medical practice. Those recommending increasing involvement of patients in treatment decision making have asserted that most patients prefer a collaborative role and that this leads to improved satisfaction with the consultation and decision-making process. Yet, this assertion is not confirmed by most of the

Conflicts of interest

There are no conflicts of interest.

Acknowledgement

The authors of this paper would like to thank Dr. Carol Bugge for her comments on an earlier draft of this paper.

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