Personal stories in publicly available patient decision aids

https://doi.org/10.1016/j.pec.2008.07.035Get rights and content

Abstract

Objective

To characterize the use of personal stories in publicly available patient decision aids (PtDAs).

Methods

Descriptive study guided by a structured coding taxonomy based on the International Patient Decision Aid Standards, Ottawa Decision Support Framework, Decisional Conflict Scale and qualitative content analysis. Personal story was defined as an illustrative, first-person narrative in any format. Sampling from the 2007 Cochrane A to Z Inventory was stratified by developer and one-third of PtDAs were randomly sampled.

Results

Of 200 publicly available PtDAs from 5 developers, 168 from 3 developers contained stories. A stratified sample of 56 PtDAs contained 260 stories. Thirty of 56 PtDAs presented an equal number of stories favouring or against the most intensive option. Thirty PtDAs described narrators’ satisfaction with outcome(s): 21 contained only stories portraying satisfaction; 9 contained stories portraying satisfaction and dissatisfaction.

Conclusion

Publicly available PtDAs vary in their use of stories. Most PtDAs balance the number of stories favouring and against the most intensive option presented; most PtDAs do not balance the number of stories portraying satisfaction or dissatisfaction with the outcome(s) of the decision.

Practice implications

Research is needed to better understand the impact of stories on patient decision making and to inform the guidelines for their inclusion in PtDAs.

Introduction

In 2006, patient decision aids from the largest five patient decision aid producers were accessed about nine million times [1] via the Internet. Patient decision aids (PtDAs) are designed to support patient involvement in decision making by: presenting evidence on options, benefits, and harms; helping patients to clarify which outcomes are more important; and guiding in the steps of decision making [2]. They not only improve decision quality (informed, based on personal values) but also reduce the use of discretionary surgery with no apparent effects on health outcomes [3]. Although personal stories are not considered an ‘essential’ element of a PtDA [4], many publicly available PtDAs include first-person narratives of others’ experiences with decision making [5]. However, little is known about how these personal stories affect patients’ decision making [6]. On the one hand, some patients may find stories more meaningful than factual information. Alternatively, the way stories are selected may bias patients’ decisions, divert them from the facts, or under represent different patients’ points of view [6].

Personal stories are first-person narratives that provide illustrative examples of others’ experiences with decision making including living with the condition, going through the steps of decision making, or experiencing the consequences of options [6]. They can be used to convey factual information on options and outcomes, to exemplify a range of values or opinions, and to illustrate the steps in decision making.

Emerging evidence suggests that patients prefer to have access to the stories of others when facing health decisions [7], [8], [9], [10]. One study examined the attitudes of 18 back-pain sufferers toward an evidence-based website designed to help patients make choices among treatment options [7]. Focus groups revealed that while back-pain sufferers had mixed feelings about the reliability of research findings, 83% preferred the personal stories on the website and found them to be an important part of the information provided. Another study examined the information needs of eight cancer patients and the role of the DIPEx website in meeting their needs [8]. DIPEx, the largest collection of publicly available patient experiences, is created and maintained by an Oxford-based charity and research group (http://www.dipex.org). Patients in this study rated the information provided on DIPEx very highly [8].

Concerns about the use of personal stories in PtDAs have also been raised by PtDA experts and there is some evidence to substantiate these concerns [6]. In a study involving 1130 participants presented with hypothetical treatment options, Ubel et al. examined participants’ choices when exposed to a balanced (50/50) presentation of personal stories describing positive/negative outcomes versus a ratio of positive/negative outcomes consistent with the statistical probabilities of these outcomes [9]. Despite keeping the statistical probabilities of outcomes consistent, more participants chose the option resulting in a positive outcome when the proportion of stories was more positive [9]. Another study examined how 245 patients used PtDA videos for a variety of medical and surgical conditions [10]. The authors found that patients valued the personal stories included in the videos and identified them as one of the most useful components of the PtDA – second only to the information presented. However, they also concluded that the stories, in addition to the information presented, had influenced the decision making of these patients [10].

Therefore, while personal stories are valued by patients facing decisions and perceived as a strategy to improve comprehension of factual information, they also have the potential to influence decision making – in ways that are not fully understood [11].

Recent debate among experts in the field of shared decision making has highlighted this dilemma: the International Patient Decision Aid Standards (IPDAS) collaboration recently reached consensus on quality criteria for the development and evaluation of PtDAs. The collaboration was comprised of patients, policy makers, practitioners, and researchers representing 14 countries [4]. During consensus-building, there was considerable debate among experts around whether or not personal stories should be included in PtDAs. Final consensus was that the inclusion of stories is not necessary for PtDAs to be of higher quality. However, when personal stories are used in PtDAs, there was consensus that: (a) there should be a range of positive and negative experiences presented; (b) patients consent to their stories being included; and (c) financial or other incentives for sharing stories are disclosed [4].

Given the large number of publicly available PtDAs that include personal stories and the debate among experts regarding their inclusion or exclusion from PtDAs, this study sought to better understand how stories are currently being used in publicly available PtDAs by exploring the characteristics of the personal stories and describing their presentation.

Section snippets

Methods

A descriptive study was conducted on a stratified random sample of PtDAs from the 2007 update to the A to Z Inventory of PtDAs [4]. PtDAs were eligible if they met the Cochrane decision aid review definition of a decision aid; were publicly available; and contained at least one personal story defined as an illustrative, first-person narrative in text, video and/or audio format. Sampling was stratified according to PtDA developer and one-third of eligible PtDAs were randomly selected from each

Results

The 2007 update of the Cochrane A to Z Inventory of Decision Aids contained 200 PtDAs produced by five developers [4]. Of 200 PtDAs, 32 (produced by two of the five developers) did not include personal stories and were therefore ineligible for the study. Of 168 eligible PtDAs, 33% were randomly selected from each of the three remaining developers for a total sample of 56 PtDAs (Fig. 1). Developer A produced video-cassette and DVD PtDAs, Developer B produced web-based text only, and Developer C

Discussion

The presentation of personal stories in publicly available PtDAs varies in breadth, depth, format and content. The balance of content is also variable: while most PtDAs equally balance the number of stories favouring and against the most intensive option presented, the majority of PtDAs do not balance the number of stories portraying narrators as satisfied or dissatisfied with the outcome(s) of their decision. Most stories portray a “happy ending” in which narrators are satisfied with the

Conflict of interest

AO has received grants from a US not for profit Foundation for Informed Decision Making (FIMDM). FIMDM has a licensing agreement with Health Dialog, a commercial company that markets patient decision aids and health coaching services. The authors have no additional conflicts of interest to declare.

Acknowledgements

Many thanks to Elizabeth Drake, Debra Morris and Anton Saarimaki for their proofreading, administrative and technical support on the project. Thanks also to Dr. Ian Graham for his advice regarding methodology.

Funding: This work was supported by a group grant of the Canadian Institutes of Health Research. AO holds a Tier 1 Canada Research Chair in Health Care Consumer Decision Support.

References (15)

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