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Personal stories in publicly available patient decision aids
Patient Education and Counseling 73 (2008) 456–464
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Personal stories in publicly available patient decision aids Sara Khangura a,*, Carol Bennett a, Dawn Stacey a,b, Annette M. O’Connor a,b a b
Ottawa Health Research Institute, Ottawa, Canada University of Ottawa, Ottawa, Canada
A R T I C L E I N F O
A B S T R A C T
Article history: Received 31 December 2007 Received in revised form 9 June 2008 Accepted 4 July 2008
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. ß 2008 Elsevier Ireland Ltd. All rights reserved.
Keywords: Patient decision making Personal stories Patient anecdotes Patient choice Decision aids
1. 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’
* Corresponding author at: Ottawa Health Research Institute, Clinical Epidemiology Program, Administrative Services Building, Room 2-013, 1053 Carling Avenue, Ottawa, Ontario, Canada K1Y 4E9. Tel.: +1 613 761 5499; fax: +1 613 761 5402. E-mail address: [email protected] (S. Khangura). 0738-3991/$ – see front matter ß 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.07.035
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 [7–10]. 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].
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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].
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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]. 1.1. Research objective 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.
Table 1 Coding framework based on the International Patient Decision Aid Standards, the Ottawa Decision Support Frameworka and the Effective Decision Subscale of the Decisional Conflict Scaleb
a b
Ottawa Decision Support Framework ß O’Connor 2003. Effective Decision Subscale, Decisional Conflict Scale ß O’Connor 2005.
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2. Methods
4. Disclosure (IPDAS): do PtDAs disclose the reason patients agreed to share the stories (financial or other)?
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 developer. 2.1. Procedure A copy of each eligible PtDA was obtained as well as publicly available documentation on its development. All personal stories in each PtDA were transcribed. Raters used a structured coding framework to analyse each PtDA and story. 2.2. Coding framework A coding framework was used to analyse the extent to which personal stories were used in each PtDA and the way in which content was presented in each story (Table 1). The framework was based on: the International Patient Decision Aid Standard (IPDAS) specific criteria focused on personal stories [4], the Ottawa Decision Support Framework [12,13] and the Decisional Conflict Scale [14]. Each eligible PtDA was characterized as follows: 1. Breadth: how many stories are presented per PtDA? 2. Balance: a. Range of experience (IPDAS): do PtDAs contain stories that represent a range of positive and negative experiences?; b. Choice made: do PtDAs present an equal number of stories portraying choices favouring and against the most intensive option?; c. Outcomes: do PtDAs present stories that portray satisfaction and dissatisfaction with the outcome(s)? 3. Consent (IPDAS): do PtDAs include a statement indicating that the patients gave informed consent to include their stories?
Each personal story was characterized as follows: 1. Depth: what is the number of words per story? 2. Demographics: what is the age, gender and ethnicity of narrators? 3. Portrayal of decisional need and support: does the story portray decisional needs (i.e., uncertainty, knowledge, values) and/or support provided (e.g., resources, advice from others)? 4. Portrayal of an ‘effective decision’: does the story portray the decision as: informed, consistent with personal values, one with which the narrator is committed to and satisfied with? 2.3. Reliability A random sub-set of seven PtDAs (10%) from the sample was analysed independently by two reviewers (SK, CB) to establish inter-rater reliability of the coding framework. Remaining PtDAs were analysed by one reviewer (SK or CB) and verified by a second reviewer (CB or SK). Initial inter-rater discrepancies were largely the result of variance in the interpretation of the coding framework. Clarification of the items in the coding framework was established by discussion and consensus and these discrepancies were reduced to an acceptable threshold (Kappa coefficient = 0.81). 2.4. Analysis The units of analyses were the PtDA and the personal story. Personal story transcripts were uploaded to NVivo 7.0 for qualitative content analysis and data were exported to Excel for quantitative analysis. Quantitative measures were analysed descriptively. 3. 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).
Fig. 1. Patient decision aid selection results.
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Table 2 Health conditions portrayed in 260 personal stories Medline (broad) health topic
Health condition
# Of stories featuring the condition
Blood, heart and circulation Blood, heart and circulation Blood, heart and circulation Blood, heart and circulation Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Digestive system Digestive system Digestive system Digestive system Ear, nose and throat Endocrine system Endocrine system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female/male reproductive systems Immune system Immune system Immune system Kidneys and urinary system Lungs and breathing Male reproductive system Male reproductive system Male reproductive system Male reproductive system Skin, hair and nails Skin, hair and nails
Autologous blood donation Coronary artery disease Coronary artery disease (screen) Stroke ACL injury Back pain Bunions Hammer toes Meniscus tear Osteoarthritis Osteoporosis Plantar fasciitis ADHD Depression Insomnia Multiple sclerosis Obsessive-compulsive disorder Stroke Tension headaches Colon cancer screening Gallstones Irritable bowel syndrome Ulcerative colitis Hearing loss Diabetes Obesity Breast cancer Breast feeding Early stage breast cancer Endometriosis Hormones after hyst/oopherectomy Menopause Pregnancy loss Prenatal tests Uterine fibroids Birth control Hepatitis B Hepatitis C Allergy to insect stings Kidney stones Smoker Benign prostatic hyperplasia Considering PSA test Erectile dysfunction Prostate cancer Fungal nail infection Hair loss
4 4 4 4 7 2 4 4 4 10 4 4 4 9 4 3 4 4 4 17 4 4 4 4 4 4 18 4 5 4 4 5 6 5 4 13 4 4 4 4 5 7 6 8 14 4 4
Total stories sampled
260
Table 3 Characteristics of 56 patient decision aids Developer
Breadth Median number of stories/PtDA (range) Balance IPDAS: stories in the PtDA represent a range of positive and negative experiences Options: the PtDA contains an equal (1) number of stories portraying choices favouring and against the most intensive option Outcomes: the PtDA contains both stories portraying satisfaction and stories portraying dissatisfaction with the outcome/s Consent IPDAS: reports patients gave informed consent to include their stories Financial disclosure IPDAS: reports if there was some financial or other reason why patients decided to share their story
Total (n = 56) (%)
A (n = 8) (%)
B (n = 43) (%)
C (n = 5) (%)
6 (4–16)
4 (4–13)
3 (2–4)
4 (2–16)
Yes
Yes
Yes
–
3 (37.5)
34 (79.1)
4 (80.0)
41 (73.2)
4 (50.0)
4 (9.3)
1 (20.0)
9 (16.1)
No
No
No
–
Yes
No
No
–
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Table 4 Characteristics of 260 personal stories Developer A (n = 59) (%) Depth Median number of words/story (range) Demographics Age of narrators Mean Range Sex of narrators Male Female Unidentified Ethnicity of narrators Number identified
201 (35–551)
59.2 49–72
Total (n = 260) (%) B (n = 187) (%)
84 (35–169)
42.9 4–75
C (n = 14) (%)
1120 (731–2594)
64.0 33–83
95 (35–2594)
44.0 4–83
28 (47.5) 31 (52.5) 0 (0.0)
73 (39.0) 109 (58.3) 5 (2.7)
8 (57.1) 6 (42.9) 0 (0.0)
109 (41.9) 146 (56.1) 5 (2.0)
59 (100.0)
0 (0.0)
14 (100.0)
73 (28.0)
Developer A produced video-cassette and DVD PtDAs, Developer B produced web-based text only, and Developer C produced webbased text with online video-clips. 3.1. Characteristics of PtDAs The 56 PtDAs contained a total of 260 personal stories, portraying a wide range of health topics (Table 2). 3.1.1. Breadth The median number of personal stories per PtDA was 4 with a range of 2–16. The number of stories per PtDA varied between developers and between PtDAs produced by the same developer (Table 3). 3.1.2. Balance (a) Range of experience: All 56 PtDAs met this IPDAS criterion by including (at least) some portrayal of positive and negative experience in the stories presented (Table 3).
(b) Options chosen: All 56 PtDAs included at least one story in which an option was favoured and/or choice made. Of 56 PtDAs, 27 (48%) presented an equal number of stories favouring or against the most intensive option in the PtDA and 41 (73%) contained equal and equal plus-or-minus one story favouring and against the most intensive option (Table 3). (c) Satisfaction with outcomes: Of 56 PtDAs, 26 (46%) did not describe the narrator’s satisfaction or dissatisfaction with the outcome(s) of their chosen option (Table 3). Of 30 PtDAs that did, 21 (70%) PtDAs contained only stories portraying satisfaction and 9 (30%) contained a combination of stories portraying satisfaction and dissatisfaction (Table 3). Of these nine PtDAs, eight included only one story describing dissatisfaction with 2 stories describing satisfaction, and one PtDA included two stories describing dissatisfaction with 10 stories describing satisfaction with outcomes. No PtDAs presented only stories describing dissatisfaction with outcomes of the decision made.
Fig. 2. Characteristics of 260 stories: portrayal of decisional need and support.
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Table 5 Exemplars illustrating the coding of items Item
Context
Excerpt
Developer
Balance: Outcome satisfaction/ dissatisfaction
‘‘If it hadn’t been for that accidental conversation that I’d had last year, I’d probably be walking around right now, the same way. I just wouldn’t have this thing on my mind that I’ve got cancer.’’
A
Decisional needs/support: uncertainty
A man opted for prostate cancer antigen testing on the advice of a friend and was consequently diagnosed with prostate cancer. He chose watchful waiting over treatment A competitive skier whose doctor has advised a knee replacement
B
Decisional needs/support: knowledge of facts Decisional needs/support: values
A man diagnosed with prostate cancer and considering treatment options A man who opted to undergo colon cancer screening
Decisional needs/support: support and resources Effective decision: feeling the choice was informed/uninformed
A woman considering continuing breast feeding after returning to work A breast cancer survivor who explains that she feels she was uninformed at the time of her decision
Effective decision: the decision shows/does not show what was important
A young male with diabetes describes how his values influenced his decision against the use of an insulin pump
Effective decision: expects/does not expect to stick with the decision
A woman who suffers from bunions discusses whether or not she expects to adhere to her decision to wear appropriate shoes
Effective decision: satisfied/ dissatisfied with the decision
A woman with an ACL (anterior cruciate ligament) tear in the knee
‘‘If I have the knee replaced, I won’t be able to ski or run or do anything that puts a lot of stress on it. I can’t do any of those things now because of the pain anyway. I don’t know how I’m going to deal with that, since being an athlete has always been a big part of who I am. I’m worried about having my knee replaced when I’m so young, but with the amount of pain I’m having, I don’t see any other choice.’’ ‘‘Lots of men get prostate cancer as they get older. I guess that makes me a statistic.’’ ‘‘The most important decision, to me, to be screened for colon cancer was peace of mind. And not to have to worry about that type of cancer.’’ ‘‘I talked to my boss, and they have a place for me to pump and store my milk during the day.’’ ‘‘I didn’t know the effects of having lymph node removal at that time, and that’s been one of the problems as far as I’m concerned. . . in this day and age where now they can do the sentinel node dissection. Five years ago when I had my surgery, that was a procedure that could have been done, but it wasn’t done. And I wished that it had been explained to me at the time so I could have made that choice to have it done or not.’’ ‘‘I’m a pretty private person and I wouldn’t want people to notice that I’m wearing a pump. Also, I play football and basketball almost year-round, and it’s a big part of my life. I know you can safely disconnect the pump for an hour or so, but my games last longer than that. I just don’t like the idea of being hooked up to a pump 24 hours a day.’’ ‘‘[My doctor] asked what kind of shoes I usually wear and if I had tried wearing shoes with a lower heel and more room in the toes. I was skeptical. I mean, women have been wearing heels for decades! But I told her I would try it for 1 or 2 months and see what happens. I’m not much into surgery if I can avoid it at all.’’ ‘‘I’m very satisfied that I decided to have the surgery. . . With the activities that I wanted to do, I now feel more comfortable that my knee is going to be very supportive and stay very strong.’’
3.1.3. Consent to use stories None of the 56 PtDAs or any publicly available documents about their development process explicitly reported that patients consented to the use of their stories (Table 3). It should be noted that stories presented in Developer A’ and C’s PtDAs (n = 13) were generated from individual patients, while those in Developer B’s PtDAs (n = 43) were composites generated from the combined experience of many patients. 3.1.4. Disclosure of incentives to share stories Of the three developers, only one (Developer A) included a statement in each PtDA explaining that patients who shared their stories were provided with a small monetary token for their participation (Table 3). 3.2. Characteristics of personal stories 3.2.1. Depth of stories Of 260 personal stories, there was a median of 95 words per story with a range of 35–2594. The length of stories varied between developers with a median of 201 words in video format for Developer A, 84 words in text format for Developer B and 1120 words in text and video format for Developer C (Table 4).
B A
B C
B
B
C
3.2.2. Demographics of narrators The mean age of narrators in the 260 stories was 44 years with a range of 4–83. Between developers, Developer B’s narrators had the largest range of ages from 4 to 75, while the others ranged from 33 to 83. Gender of story narrators was often determined by the health topic addressed in the PtDA (e.g., PtDAs about prostate cancer treatment contained stories most often told by older men). Of 260 stories, there were 146 female narrators and 109 male narrators. Of 260 narrators, ethnicity was visually identifiable in 73 stories presented with photographs and video (28%) (Table 4). 3.2.3. Portrayal of decisional need and support All stories featured at least one decisional need and/or support issue. Of 260 stories, 133 (51%) portrayed knowledge of facts, 193 (74%) described narrators’ values for outcomes of options, and 100 (38%) described availability, or lack thereof, of support and resources that contributed to the narrator’s decision making. Only four stories (2%) portrayed uncertainty in decision making (Fig. 2). 3.2.4. Portrayal of effective decision Portrayal of the narrator feeling informed, the decision being based on the narrator’s values, the narrator’s commitment to and satisfaction with the decision were not consistently portrayed in
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Fig. 3. Characteristics of 260 stories: portrayal of effective decision.
the 260 stories (exemplars in Table 5). Often, this could be attributed to the depth of information provided by a developer’s stories, i.e., lengthier stories tended to portray items in the subscale more often than brief stories. Results from the Effective Decision Subscale used in the coding framework were striking though, in that when the decision was portrayed as effective or not, it was overwhelmingly portrayed as effective, or positively. Of 260 stories, 102 (39%) portrayed the narrator as feeling informed or uninformed with 95 of these (93%) narrators indicating their choice was informed and 7 (7%) indicating they were uninformed (Fig. 3). Of 260 stories, 165 (63%) portrayed the narrators’ decision congruence, or lack thereof, with his/her values; 162 of these (98%) portrayed a decision consistent with the narrator’s values and 3
(2%) portrayed a decision that was not consistent with the narrator’s values. The narrator’s expectation to stick with their decision (or not) was portrayed by 93 (36%) of the 260 stories. Of these 93 stories, the narrator was portrayed as committed to his/her decision in 71 of them (76%) (Fig. 3). It should be noted that many stories portrayed irrevocable decisions that had already been carried out, rendering this item not applicable. This item was coded as ‘‘Not described’’ for these stories. Of 260 stories, 89 (34%) narrators indicated satisfaction or dissatisfaction with the decision with 83 of these (93%) being satisfied and 6 (7%) dissatisfied (Fig. 3). This item may appear similar to that measured earlier, in which satisfaction or dissatisfaction with the outcomes of the decision was examined. However, a narrator
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may have described dissatisfaction with one or more outcomes, but overall, may describe satisfaction with the decision. 4. Discussion and conclusion 4.1. 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 outcome(s) of their decision and few stories describe dissatisfaction or regret. The portrayal of decisional need and effective decisions is similarly variable between PtDAs and PtDA developers. This variability is not surprising, given the lack of comprehensive guidelines informing this aspect of PtDA development. The three endorsed IPDAS criteria applicable to the use of personal stories in PtDAs provide some measure for assessing the quality of story presentation within PtDAs, though limitations were observed in applying these criteria. None of the PtDAs met the IPDAS criterion regarding whether patients gave informed consent to use their stories, however, this criterion had limited relevance in some situations. For example, Developer B included a statement within each PtDA explaining that stories were generated by information compiled from the combined experiences of health practitioners and patients and not based on individual cases. As such, obtaining informed consent to use these stories would not have been required. Developer A included a statement indicating that patients sharing stories were volunteers; however, this was not deemed to be the same as informed consent. Only one of the three developers’ PtDAs met the IPDAS criterion regarding disclosure of financial incentives for sharing stories. The same statement from Developer A explaining that patients who shared stories were volunteers earned PtDAs from this developer credit for the IPDAS criterion regarding financial disclosure of incentives, however, it could be argued that this is not explicit financial disclosure. On the other hand, there was little difficulty in determining that Developers B and C did not provide information addressing this criterion. The IPDAS criterion that considers a range of experiences presented in a PtDA’s personal stories was the most difficult to apply because precisely what constitutes an ‘‘experience’’ is not made explicit and was therefore subject to interpretation by reviewers. For example, if the narrator of a story described only the experiences of another person in considering his or her decision, does the PtDA receive credit for this criterion? Do valuesstatements qualify as experience? Application of this criterion was liberal to account for these unknowns, and thus, all PtDAs in the sample received credit. However, it did raise this and other questions about the clarity of this criterion. Measuring the range of experiences is an important focus for future research into the use of personal stories in PtDAs. The work of Ubel et al. [9] has shown a correlation between the portrayal of positive versus negative outcomes in patient narratives and impact on hypothetical choice. The results of our work demonstrate that the concept of ‘‘experience’’ must be defined more clearly and in order to be measured more effectively. Another issue highlighted by the work of the IPDAS subcommittee investigating personal stories in PtDAs is that of
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balance [6], in particular, what constitutes a balanced presentation of stories in PtDAs? Is a ‘‘balanced’’ approach to including personal stories in PtDAs an equal number of stories in which a particular theme is presented or not? Does a balanced approach mean a number of stories describing outcomes proportionate to statistical probabilities of outcomes, or reflective of the number of patients who choose various options in real-life? Is there some other, more optimal method? The number of stories favouring or against the most intensive option was balanced equally, or close to equally, in most of the 56 PtDAs in our sample. It is not yet known, however, if this is what constitutes the optimal approach. Interestingly, Developer A was the only of three developers to address this issue, though indirectly: a statement on each PtDA explains that the stories they presented did not reflect the number of patients who choose an option but the range of possible choices that patients can and do make. On the other hand, the number of stories per PtDA that portrayed the narrator’s satisfaction or dissatisfaction with the outcome(s) of their chosen option was not balanced in our sample. In fact, the disparity between those portrayed as satisfied versus dissatisfied was considerable: the majority of narrators were portrayed as satisfied with the outcome(s) of their decision, with little coverage given to those who felt dissatisfaction or regret. It is not known if this reflects a deliberate selection process on the part of PtDA developers, to include only those stories that end well, or if this results from a greater willingness among satisfied patients to volunteer their stories versus those patients who are dissatisfied with the outcomes resulting from their choice. Again, it is not yet known whether presenting a greater number of stories portraying satisfaction with the decision and/or outcome(s) is optimal. When considering a best practice for the balance of personal stories in PtDAs, some existing evidence is compelling. The study described earlier by Ubel et al. [9] showed that the number of positive and negative outcomes presented through stories does impact hypothetical treatment choices, despite consistent presentation of statistical probabilities. A follow-up study demonstrated that this impact may be attributed to common deficiencies in the ability to comprehend statistical probabilities rather than the stories themselves. This study used pictographs in addition to numbers when presenting statistical probabilities and greatly reduced the impact of the stories, or anecdotes, on hypothetical choices as compared to information that did not include the pictographs [15]. This method of presenting statistical probabilities and balancing stories deserves additional investigation with real-life patient decisions as a potential strategy for including stories in PtDAs while reducing their potential impact on choice. When considering the portrayal of decisional need and support elements, knowledge and values were portrayed more often than uncertainty and support/resources. While the relative importance of including stories that portray uncertainty or inadequate support/resources has yet to be determined, the reasons for their infrequent inclusion in stories are unclear: it could be that narrators do not express their uncertainty when recounting their story, or they do not perceive the support and resources they considered in making their choice to be as important as the information they considered or the values they weighed in making their decision. Alternatively, it could be that the editors and writers of these stories downplay or fail to include this information. While many stories did not explicitly portray items in the modified Effective Decision Subscale, what was striking was that for those in which an item was described, it was most often framed positively (e.g., the decision was in keeping with the narrator’s values, the narrator was satisfied with the decision). There were very few stories in which a narrator described feeling that their
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decision was uninformed, that it did not reflect their values, that they felt a lack of commitment to the decision, or that they were not satisfied with their decision. There could be multiple reasons for this: it could be that patients who feel their decisions were not ‘‘effective’’ are less likely to come forward and share their stories; it could be a deliberate selection process on the part of the PtDA developer to exclude such stories; or, it could be that patients generally do report being satisfied with the decision and its outcome(s) after the fact [6]. Limitations of the sample may also be a contributing factor. Interpretation of these study results must take into account its limitations. While it is known that personal stories impact patient decision making, it is yet poorly understood how this happens. Thus, the outcome measures chosen for this study may or may not be the most useful for understanding how this mechanism takes place. Additional research is needed to address how decision quality is affected by the number of stories per decision aid and their depth; the balance of stories describing decisions for and against the most intensive option and portraying satisfaction and dissatisfaction with outcomes; and story portrayal of decisional need, support and effective decision items. The framework for coding stories does not reflect all conceptual frameworks. Our sample size was small with only three large PtDA developers represented. Subsequent research to enhance generalisability should look toward exploring personal stories in PtDAs from additional developers, even if these PtDAs are not widely available. Inter-rater reliability testing was limited to two reviewers from one centre using a 10% sub-sample of PtDAs. Additional testing could address this. 4.2. Conclusion Personal stories are used in most widely available PtDAs and their presentation varies in breadth, depth, format, content and balance. Most PtDAs equally balance the number of stories favouring and against the most intensive option presented. Most PtDAs portrayed narrators as satisfied with the outcome(s) of their decision. Quality criteria for evaluating the use of personal stories in PtDAs are limited in their ability to assess these and other characteristics. Because stories are useful in presenting salient information in a way that patients can understand and are generally valued by patients, continued use of personal stories in publicly available PtDAs is likely. Until additional evidence is generated that can inform a best-practice for the use of personal stories in PtDAs, their effect on patient decision making will remain poorly understood and their inclusion in PtDAs that are widely used by a public audience is therefore questionable. 4.3. Practice implications Given that personal stories have the power to impact choice and many publicly available PtDAs present personal stories in widely variable ways, urgency exists for further investigation in this area with comprehensive guidelines for the inclusion of personal stories in PtDAs as a primary goal.
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. 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. References [1] O’Connor AM, Wennberg JE, Legare F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Aff 2007;26:716–25. [2] O’Connor A, Bennett C, Stacey D, Barry M, Col N, Eden K, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Med Decis Making 2007;27:554. [3] Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. Br Med J 2007;335:24–7. [4] Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, FeldmanStewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T, International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Br Med J 2006;333:417. [5] A-Z Inventory of Decision Aids. http://decisionaid.ohri.ca/AZinvent.php [Accessed March 8, 2007]. [6] Butow P, Fowler FJ, Ziebland S. Using personal stories. In: IPDAS collaboration background document. http://ipdas.ohri.ca/IPDAS_Background.pdf [Accessed July 2007]. [7] Glenton C, Nilsen ES, Carlsen B. Lay perceptions of evidence-based information – a qualitative evaluation of a website for back pain sufferers. BMC Health Serv Res 2006;6:34. [8] Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Pt Educ Couns 2004;53:57–64. [9] Ubel PA, Jepson C, Baron J. The inclusion of patient testimonials in decision aids: effects on treatment choices. Med Decis Making 2001;21:60–8. [10] O’Connor MA, Levin CA, Kearing S, Fowler FJ. What’s the use? An exploration of how video decision aids are used by patients. Boston, MA: Society of Medical Decision Making 28th Annual Meeting; 2006. [11] Feldman-Stewart D, Brennenstuhl S, McIssac K, Austoker J, Charvet A, Hewitson P, Sepucha K, Whelan T. A systematic review of information in decision aids. Health Expect 2007;10:46–61. [12] O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Pt Educ Couns 1998;33:267–79. [13] O’Connor AM. Ottawa decision support framework to address decisional conflict. http://decisionaid.ohri.ca/docs/develop/ODSF.pdf [Accessed January 8, 2007]. [14] O’Connor AM. Validation of a decisional conflict scale. Med Decis Making 1995;15:25–30. [15] Fagerlin A, Wang C, Ubel PA. Reducing the influence of anecdotal reasoning on people’s health care decisions: is a picture worth a thousand statistics? Med Decis Making 2005;25:398–405.
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Personal stories in publicly available patient decision aids Sara Khangura a,*, Carol Bennett a, Dawn Stacey a,b, Annette M. O’Connor a,b a b
Ottawa Health Research Institute, Ottawa, Canada University of Ottawa, Ottawa, Canada
A R T I C L E I N F O
A B S T R A C T
Article history: Received 31 December 2007 Received in revised form 9 June 2008 Accepted 4 July 2008
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. ß 2008 Elsevier Ireland Ltd. All rights reserved.
Keywords: Patient decision making Personal stories Patient anecdotes Patient choice Decision aids
1. 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’
* Corresponding author at: Ottawa Health Research Institute, Clinical Epidemiology Program, Administrative Services Building, Room 2-013, 1053 Carling Avenue, Ottawa, Ontario, Canada K1Y 4E9. Tel.: +1 613 761 5499; fax: +1 613 761 5402. E-mail address: [email protected] (S. Khangura). 0738-3991/$ – see front matter ß 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.07.035
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 [7–10]. 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].
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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].
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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]. 1.1. Research objective 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.
Table 1 Coding framework based on the International Patient Decision Aid Standards, the Ottawa Decision Support Frameworka and the Effective Decision Subscale of the Decisional Conflict Scaleb
a b
Ottawa Decision Support Framework ß O’Connor 2003. Effective Decision Subscale, Decisional Conflict Scale ß O’Connor 2005.
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2. Methods
4. Disclosure (IPDAS): do PtDAs disclose the reason patients agreed to share the stories (financial or other)?
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 developer. 2.1. Procedure A copy of each eligible PtDA was obtained as well as publicly available documentation on its development. All personal stories in each PtDA were transcribed. Raters used a structured coding framework to analyse each PtDA and story. 2.2. Coding framework A coding framework was used to analyse the extent to which personal stories were used in each PtDA and the way in which content was presented in each story (Table 1). The framework was based on: the International Patient Decision Aid Standard (IPDAS) specific criteria focused on personal stories [4], the Ottawa Decision Support Framework [12,13] and the Decisional Conflict Scale [14]. Each eligible PtDA was characterized as follows: 1. Breadth: how many stories are presented per PtDA? 2. Balance: a. Range of experience (IPDAS): do PtDAs contain stories that represent a range of positive and negative experiences?; b. Choice made: do PtDAs present an equal number of stories portraying choices favouring and against the most intensive option?; c. Outcomes: do PtDAs present stories that portray satisfaction and dissatisfaction with the outcome(s)? 3. Consent (IPDAS): do PtDAs include a statement indicating that the patients gave informed consent to include their stories?
Each personal story was characterized as follows: 1. Depth: what is the number of words per story? 2. Demographics: what is the age, gender and ethnicity of narrators? 3. Portrayal of decisional need and support: does the story portray decisional needs (i.e., uncertainty, knowledge, values) and/or support provided (e.g., resources, advice from others)? 4. Portrayal of an ‘effective decision’: does the story portray the decision as: informed, consistent with personal values, one with which the narrator is committed to and satisfied with? 2.3. Reliability A random sub-set of seven PtDAs (10%) from the sample was analysed independently by two reviewers (SK, CB) to establish inter-rater reliability of the coding framework. Remaining PtDAs were analysed by one reviewer (SK or CB) and verified by a second reviewer (CB or SK). Initial inter-rater discrepancies were largely the result of variance in the interpretation of the coding framework. Clarification of the items in the coding framework was established by discussion and consensus and these discrepancies were reduced to an acceptable threshold (Kappa coefficient = 0.81). 2.4. Analysis The units of analyses were the PtDA and the personal story. Personal story transcripts were uploaded to NVivo 7.0 for qualitative content analysis and data were exported to Excel for quantitative analysis. Quantitative measures were analysed descriptively. 3. 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).
Fig. 1. Patient decision aid selection results.
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Table 2 Health conditions portrayed in 260 personal stories Medline (broad) health topic
Health condition
# Of stories featuring the condition
Blood, heart and circulation Blood, heart and circulation Blood, heart and circulation Blood, heart and circulation Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Bones, joints and muscles Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Brain and nerves Digestive system Digestive system Digestive system Digestive system Ear, nose and throat Endocrine system Endocrine system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female reproductive system Female/male reproductive systems Immune system Immune system Immune system Kidneys and urinary system Lungs and breathing Male reproductive system Male reproductive system Male reproductive system Male reproductive system Skin, hair and nails Skin, hair and nails
Autologous blood donation Coronary artery disease Coronary artery disease (screen) Stroke ACL injury Back pain Bunions Hammer toes Meniscus tear Osteoarthritis Osteoporosis Plantar fasciitis ADHD Depression Insomnia Multiple sclerosis Obsessive-compulsive disorder Stroke Tension headaches Colon cancer screening Gallstones Irritable bowel syndrome Ulcerative colitis Hearing loss Diabetes Obesity Breast cancer Breast feeding Early stage breast cancer Endometriosis Hormones after hyst/oopherectomy Menopause Pregnancy loss Prenatal tests Uterine fibroids Birth control Hepatitis B Hepatitis C Allergy to insect stings Kidney stones Smoker Benign prostatic hyperplasia Considering PSA test Erectile dysfunction Prostate cancer Fungal nail infection Hair loss
4 4 4 4 7 2 4 4 4 10 4 4 4 9 4 3 4 4 4 17 4 4 4 4 4 4 18 4 5 4 4 5 6 5 4 13 4 4 4 4 5 7 6 8 14 4 4
Total stories sampled
260
Table 3 Characteristics of 56 patient decision aids Developer
Breadth Median number of stories/PtDA (range) Balance IPDAS: stories in the PtDA represent a range of positive and negative experiences Options: the PtDA contains an equal (1) number of stories portraying choices favouring and against the most intensive option Outcomes: the PtDA contains both stories portraying satisfaction and stories portraying dissatisfaction with the outcome/s Consent IPDAS: reports patients gave informed consent to include their stories Financial disclosure IPDAS: reports if there was some financial or other reason why patients decided to share their story
Total (n = 56) (%)
A (n = 8) (%)
B (n = 43) (%)
C (n = 5) (%)
6 (4–16)
4 (4–13)
3 (2–4)
4 (2–16)
Yes
Yes
Yes
–
3 (37.5)
34 (79.1)
4 (80.0)
41 (73.2)
4 (50.0)
4 (9.3)
1 (20.0)
9 (16.1)
No
No
No
–
Yes
No
No
–
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Table 4 Characteristics of 260 personal stories Developer A (n = 59) (%) Depth Median number of words/story (range) Demographics Age of narrators Mean Range Sex of narrators Male Female Unidentified Ethnicity of narrators Number identified
201 (35–551)
59.2 49–72
Total (n = 260) (%) B (n = 187) (%)
84 (35–169)
42.9 4–75
C (n = 14) (%)
1120 (731–2594)
64.0 33–83
95 (35–2594)
44.0 4–83
28 (47.5) 31 (52.5) 0 (0.0)
73 (39.0) 109 (58.3) 5 (2.7)
8 (57.1) 6 (42.9) 0 (0.0)
109 (41.9) 146 (56.1) 5 (2.0)
59 (100.0)
0 (0.0)
14 (100.0)
73 (28.0)
Developer A produced video-cassette and DVD PtDAs, Developer B produced web-based text only, and Developer C produced webbased text with online video-clips. 3.1. Characteristics of PtDAs The 56 PtDAs contained a total of 260 personal stories, portraying a wide range of health topics (Table 2). 3.1.1. Breadth The median number of personal stories per PtDA was 4 with a range of 2–16. The number of stories per PtDA varied between developers and between PtDAs produced by the same developer (Table 3). 3.1.2. Balance (a) Range of experience: All 56 PtDAs met this IPDAS criterion by including (at least) some portrayal of positive and negative experience in the stories presented (Table 3).
(b) Options chosen: All 56 PtDAs included at least one story in which an option was favoured and/or choice made. Of 56 PtDAs, 27 (48%) presented an equal number of stories favouring or against the most intensive option in the PtDA and 41 (73%) contained equal and equal plus-or-minus one story favouring and against the most intensive option (Table 3). (c) Satisfaction with outcomes: Of 56 PtDAs, 26 (46%) did not describe the narrator’s satisfaction or dissatisfaction with the outcome(s) of their chosen option (Table 3). Of 30 PtDAs that did, 21 (70%) PtDAs contained only stories portraying satisfaction and 9 (30%) contained a combination of stories portraying satisfaction and dissatisfaction (Table 3). Of these nine PtDAs, eight included only one story describing dissatisfaction with 2 stories describing satisfaction, and one PtDA included two stories describing dissatisfaction with 10 stories describing satisfaction with outcomes. No PtDAs presented only stories describing dissatisfaction with outcomes of the decision made.
Fig. 2. Characteristics of 260 stories: portrayal of decisional need and support.
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Table 5 Exemplars illustrating the coding of items Item
Context
Excerpt
Developer
Balance: Outcome satisfaction/ dissatisfaction
‘‘If it hadn’t been for that accidental conversation that I’d had last year, I’d probably be walking around right now, the same way. I just wouldn’t have this thing on my mind that I’ve got cancer.’’
A
Decisional needs/support: uncertainty
A man opted for prostate cancer antigen testing on the advice of a friend and was consequently diagnosed with prostate cancer. He chose watchful waiting over treatment A competitive skier whose doctor has advised a knee replacement
B
Decisional needs/support: knowledge of facts Decisional needs/support: values
A man diagnosed with prostate cancer and considering treatment options A man who opted to undergo colon cancer screening
Decisional needs/support: support and resources Effective decision: feeling the choice was informed/uninformed
A woman considering continuing breast feeding after returning to work A breast cancer survivor who explains that she feels she was uninformed at the time of her decision
Effective decision: the decision shows/does not show what was important
A young male with diabetes describes how his values influenced his decision against the use of an insulin pump
Effective decision: expects/does not expect to stick with the decision
A woman who suffers from bunions discusses whether or not she expects to adhere to her decision to wear appropriate shoes
Effective decision: satisfied/ dissatisfied with the decision
A woman with an ACL (anterior cruciate ligament) tear in the knee
‘‘If I have the knee replaced, I won’t be able to ski or run or do anything that puts a lot of stress on it. I can’t do any of those things now because of the pain anyway. I don’t know how I’m going to deal with that, since being an athlete has always been a big part of who I am. I’m worried about having my knee replaced when I’m so young, but with the amount of pain I’m having, I don’t see any other choice.’’ ‘‘Lots of men get prostate cancer as they get older. I guess that makes me a statistic.’’ ‘‘The most important decision, to me, to be screened for colon cancer was peace of mind. And not to have to worry about that type of cancer.’’ ‘‘I talked to my boss, and they have a place for me to pump and store my milk during the day.’’ ‘‘I didn’t know the effects of having lymph node removal at that time, and that’s been one of the problems as far as I’m concerned. . . in this day and age where now they can do the sentinel node dissection. Five years ago when I had my surgery, that was a procedure that could have been done, but it wasn’t done. And I wished that it had been explained to me at the time so I could have made that choice to have it done or not.’’ ‘‘I’m a pretty private person and I wouldn’t want people to notice that I’m wearing a pump. Also, I play football and basketball almost year-round, and it’s a big part of my life. I know you can safely disconnect the pump for an hour or so, but my games last longer than that. I just don’t like the idea of being hooked up to a pump 24 hours a day.’’ ‘‘[My doctor] asked what kind of shoes I usually wear and if I had tried wearing shoes with a lower heel and more room in the toes. I was skeptical. I mean, women have been wearing heels for decades! But I told her I would try it for 1 or 2 months and see what happens. I’m not much into surgery if I can avoid it at all.’’ ‘‘I’m very satisfied that I decided to have the surgery. . . With the activities that I wanted to do, I now feel more comfortable that my knee is going to be very supportive and stay very strong.’’
3.1.3. Consent to use stories None of the 56 PtDAs or any publicly available documents about their development process explicitly reported that patients consented to the use of their stories (Table 3). It should be noted that stories presented in Developer A’ and C’s PtDAs (n = 13) were generated from individual patients, while those in Developer B’s PtDAs (n = 43) were composites generated from the combined experience of many patients. 3.1.4. Disclosure of incentives to share stories Of the three developers, only one (Developer A) included a statement in each PtDA explaining that patients who shared their stories were provided with a small monetary token for their participation (Table 3). 3.2. Characteristics of personal stories 3.2.1. Depth of stories Of 260 personal stories, there was a median of 95 words per story with a range of 35–2594. The length of stories varied between developers with a median of 201 words in video format for Developer A, 84 words in text format for Developer B and 1120 words in text and video format for Developer C (Table 4).
B A
B C
B
B
C
3.2.2. Demographics of narrators The mean age of narrators in the 260 stories was 44 years with a range of 4–83. Between developers, Developer B’s narrators had the largest range of ages from 4 to 75, while the others ranged from 33 to 83. Gender of story narrators was often determined by the health topic addressed in the PtDA (e.g., PtDAs about prostate cancer treatment contained stories most often told by older men). Of 260 stories, there were 146 female narrators and 109 male narrators. Of 260 narrators, ethnicity was visually identifiable in 73 stories presented with photographs and video (28%) (Table 4). 3.2.3. Portrayal of decisional need and support All stories featured at least one decisional need and/or support issue. Of 260 stories, 133 (51%) portrayed knowledge of facts, 193 (74%) described narrators’ values for outcomes of options, and 100 (38%) described availability, or lack thereof, of support and resources that contributed to the narrator’s decision making. Only four stories (2%) portrayed uncertainty in decision making (Fig. 2). 3.2.4. Portrayal of effective decision Portrayal of the narrator feeling informed, the decision being based on the narrator’s values, the narrator’s commitment to and satisfaction with the decision were not consistently portrayed in
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Fig. 3. Characteristics of 260 stories: portrayal of effective decision.
the 260 stories (exemplars in Table 5). Often, this could be attributed to the depth of information provided by a developer’s stories, i.e., lengthier stories tended to portray items in the subscale more often than brief stories. Results from the Effective Decision Subscale used in the coding framework were striking though, in that when the decision was portrayed as effective or not, it was overwhelmingly portrayed as effective, or positively. Of 260 stories, 102 (39%) portrayed the narrator as feeling informed or uninformed with 95 of these (93%) narrators indicating their choice was informed and 7 (7%) indicating they were uninformed (Fig. 3). Of 260 stories, 165 (63%) portrayed the narrators’ decision congruence, or lack thereof, with his/her values; 162 of these (98%) portrayed a decision consistent with the narrator’s values and 3
(2%) portrayed a decision that was not consistent with the narrator’s values. The narrator’s expectation to stick with their decision (or not) was portrayed by 93 (36%) of the 260 stories. Of these 93 stories, the narrator was portrayed as committed to his/her decision in 71 of them (76%) (Fig. 3). It should be noted that many stories portrayed irrevocable decisions that had already been carried out, rendering this item not applicable. This item was coded as ‘‘Not described’’ for these stories. Of 260 stories, 89 (34%) narrators indicated satisfaction or dissatisfaction with the decision with 83 of these (93%) being satisfied and 6 (7%) dissatisfied (Fig. 3). This item may appear similar to that measured earlier, in which satisfaction or dissatisfaction with the outcomes of the decision was examined. However, a narrator
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may have described dissatisfaction with one or more outcomes, but overall, may describe satisfaction with the decision. 4. Discussion and conclusion 4.1. 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 outcome(s) of their decision and few stories describe dissatisfaction or regret. The portrayal of decisional need and effective decisions is similarly variable between PtDAs and PtDA developers. This variability is not surprising, given the lack of comprehensive guidelines informing this aspect of PtDA development. The three endorsed IPDAS criteria applicable to the use of personal stories in PtDAs provide some measure for assessing the quality of story presentation within PtDAs, though limitations were observed in applying these criteria. None of the PtDAs met the IPDAS criterion regarding whether patients gave informed consent to use their stories, however, this criterion had limited relevance in some situations. For example, Developer B included a statement within each PtDA explaining that stories were generated by information compiled from the combined experiences of health practitioners and patients and not based on individual cases. As such, obtaining informed consent to use these stories would not have been required. Developer A included a statement indicating that patients sharing stories were volunteers; however, this was not deemed to be the same as informed consent. Only one of the three developers’ PtDAs met the IPDAS criterion regarding disclosure of financial incentives for sharing stories. The same statement from Developer A explaining that patients who shared stories were volunteers earned PtDAs from this developer credit for the IPDAS criterion regarding financial disclosure of incentives, however, it could be argued that this is not explicit financial disclosure. On the other hand, there was little difficulty in determining that Developers B and C did not provide information addressing this criterion. The IPDAS criterion that considers a range of experiences presented in a PtDA’s personal stories was the most difficult to apply because precisely what constitutes an ‘‘experience’’ is not made explicit and was therefore subject to interpretation by reviewers. For example, if the narrator of a story described only the experiences of another person in considering his or her decision, does the PtDA receive credit for this criterion? Do valuesstatements qualify as experience? Application of this criterion was liberal to account for these unknowns, and thus, all PtDAs in the sample received credit. However, it did raise this and other questions about the clarity of this criterion. Measuring the range of experiences is an important focus for future research into the use of personal stories in PtDAs. The work of Ubel et al. [9] has shown a correlation between the portrayal of positive versus negative outcomes in patient narratives and impact on hypothetical choice. The results of our work demonstrate that the concept of ‘‘experience’’ must be defined more clearly and in order to be measured more effectively. Another issue highlighted by the work of the IPDAS subcommittee investigating personal stories in PtDAs is that of
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balance [6], in particular, what constitutes a balanced presentation of stories in PtDAs? Is a ‘‘balanced’’ approach to including personal stories in PtDAs an equal number of stories in which a particular theme is presented or not? Does a balanced approach mean a number of stories describing outcomes proportionate to statistical probabilities of outcomes, or reflective of the number of patients who choose various options in real-life? Is there some other, more optimal method? The number of stories favouring or against the most intensive option was balanced equally, or close to equally, in most of the 56 PtDAs in our sample. It is not yet known, however, if this is what constitutes the optimal approach. Interestingly, Developer A was the only of three developers to address this issue, though indirectly: a statement on each PtDA explains that the stories they presented did not reflect the number of patients who choose an option but the range of possible choices that patients can and do make. On the other hand, the number of stories per PtDA that portrayed the narrator’s satisfaction or dissatisfaction with the outcome(s) of their chosen option was not balanced in our sample. In fact, the disparity between those portrayed as satisfied versus dissatisfied was considerable: the majority of narrators were portrayed as satisfied with the outcome(s) of their decision, with little coverage given to those who felt dissatisfaction or regret. It is not known if this reflects a deliberate selection process on the part of PtDA developers, to include only those stories that end well, or if this results from a greater willingness among satisfied patients to volunteer their stories versus those patients who are dissatisfied with the outcomes resulting from their choice. Again, it is not yet known whether presenting a greater number of stories portraying satisfaction with the decision and/or outcome(s) is optimal. When considering a best practice for the balance of personal stories in PtDAs, some existing evidence is compelling. The study described earlier by Ubel et al. [9] showed that the number of positive and negative outcomes presented through stories does impact hypothetical treatment choices, despite consistent presentation of statistical probabilities. A follow-up study demonstrated that this impact may be attributed to common deficiencies in the ability to comprehend statistical probabilities rather than the stories themselves. This study used pictographs in addition to numbers when presenting statistical probabilities and greatly reduced the impact of the stories, or anecdotes, on hypothetical choices as compared to information that did not include the pictographs [15]. This method of presenting statistical probabilities and balancing stories deserves additional investigation with real-life patient decisions as a potential strategy for including stories in PtDAs while reducing their potential impact on choice. When considering the portrayal of decisional need and support elements, knowledge and values were portrayed more often than uncertainty and support/resources. While the relative importance of including stories that portray uncertainty or inadequate support/resources has yet to be determined, the reasons for their infrequent inclusion in stories are unclear: it could be that narrators do not express their uncertainty when recounting their story, or they do not perceive the support and resources they considered in making their choice to be as important as the information they considered or the values they weighed in making their decision. Alternatively, it could be that the editors and writers of these stories downplay or fail to include this information. While many stories did not explicitly portray items in the modified Effective Decision Subscale, what was striking was that for those in which an item was described, it was most often framed positively (e.g., the decision was in keeping with the narrator’s values, the narrator was satisfied with the decision). There were very few stories in which a narrator described feeling that their
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decision was uninformed, that it did not reflect their values, that they felt a lack of commitment to the decision, or that they were not satisfied with their decision. There could be multiple reasons for this: it could be that patients who feel their decisions were not ‘‘effective’’ are less likely to come forward and share their stories; it could be a deliberate selection process on the part of the PtDA developer to exclude such stories; or, it could be that patients generally do report being satisfied with the decision and its outcome(s) after the fact [6]. Limitations of the sample may also be a contributing factor. Interpretation of these study results must take into account its limitations. While it is known that personal stories impact patient decision making, it is yet poorly understood how this happens. Thus, the outcome measures chosen for this study may or may not be the most useful for understanding how this mechanism takes place. Additional research is needed to address how decision quality is affected by the number of stories per decision aid and their depth; the balance of stories describing decisions for and against the most intensive option and portraying satisfaction and dissatisfaction with outcomes; and story portrayal of decisional need, support and effective decision items. The framework for coding stories does not reflect all conceptual frameworks. Our sample size was small with only three large PtDA developers represented. Subsequent research to enhance generalisability should look toward exploring personal stories in PtDAs from additional developers, even if these PtDAs are not widely available. Inter-rater reliability testing was limited to two reviewers from one centre using a 10% sub-sample of PtDAs. Additional testing could address this. 4.2. Conclusion Personal stories are used in most widely available PtDAs and their presentation varies in breadth, depth, format, content and balance. Most PtDAs equally balance the number of stories favouring and against the most intensive option presented. Most PtDAs portrayed narrators as satisfied with the outcome(s) of their decision. Quality criteria for evaluating the use of personal stories in PtDAs are limited in their ability to assess these and other characteristics. Because stories are useful in presenting salient information in a way that patients can understand and are generally valued by patients, continued use of personal stories in publicly available PtDAs is likely. Until additional evidence is generated that can inform a best-practice for the use of personal stories in PtDAs, their effect on patient decision making will remain poorly understood and their inclusion in PtDAs that are widely used by a public audience is therefore questionable. 4.3. Practice implications Given that personal stories have the power to impact choice and many publicly available PtDAs present personal stories in widely variable ways, urgency exists for further investigation in this area with comprehensive guidelines for the inclusion of personal stories in PtDAs as a primary goal.
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. 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. References [1] O’Connor AM, Wennberg JE, Legare F, Llewellyn-Thomas HA, Moulton BW, Sepucha KR, Sodano AG, King JS. Toward the ‘tipping point’: decision aids and informed patient choice. Health Aff 2007;26:716–25. [2] O’Connor A, Bennett C, Stacey D, Barry M, Col N, Eden K, Entwistle V, Fiset V, Holmes-Rovner M, Khangura S, Llewellyn-Thomas H, Rovner D. Do patient decision aids meet effectiveness criteria of the international patient decision aid standards collaboration? A systematic review and meta-analysis. Med Decis Making 2007;27:554. [3] Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. Br Med J 2007;335:24–7. [4] Elwyn G, O’Connor A, Stacey D, Volk R, Edwards A, Coulter A, Thomson R, Barratt A, Barry M, Bernstein S, Butow P, Clarke A, Entwistle V, FeldmanStewart D, Holmes-Rovner M, Llewellyn-Thomas H, Moumjid N, Mulley A, Ruland C, Sepucha K, Sykes A, Whelan T, International Patient Decision Aids Standards (IPDAS) Collaboration. Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. Br Med J 2006;333:417. [5] A-Z Inventory of Decision Aids. http://decisionaid.ohri.ca/AZinvent.php [Accessed March 8, 2007]. [6] Butow P, Fowler FJ, Ziebland S. Using personal stories. In: IPDAS collaboration background document. http://ipdas.ohri.ca/IPDAS_Background.pdf [Accessed July 2007]. [7] Glenton C, Nilsen ES, Carlsen B. Lay perceptions of evidence-based information – a qualitative evaluation of a website for back pain sufferers. BMC Health Serv Res 2006;6:34. [8] Rozmovits L, Ziebland S. What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs. Pt Educ Couns 2004;53:57–64. [9] Ubel PA, Jepson C, Baron J. The inclusion of patient testimonials in decision aids: effects on treatment choices. Med Decis Making 2001;21:60–8. [10] O’Connor MA, Levin CA, Kearing S, Fowler FJ. What’s the use? An exploration of how video decision aids are used by patients. Boston, MA: Society of Medical Decision Making 28th Annual Meeting; 2006. [11] Feldman-Stewart D, Brennenstuhl S, McIssac K, Austoker J, Charvet A, Hewitson P, Sepucha K, Whelan T. A systematic review of information in decision aids. Health Expect 2007;10:46–61. [12] O’Connor AM, Tugwell P, Wells GA, Elmslie T, Jolly E, Hollingworth G, McPherson R, Bunn H, Graham I, Drake E. A decision aid for women considering hormone therapy after menopause: decision support framework and evaluation. Pt Educ Couns 1998;33:267–79. [13] O’Connor AM. Ottawa decision support framework to address decisional conflict. http://decisionaid.ohri.ca/docs/develop/ODSF.pdf [Accessed January 8, 2007]. [14] O’Connor AM. Validation of a decisional conflict scale. Med Decis Making 1995;15:25–30. [15] Fagerlin A, Wang C, Ubel PA. Reducing the influence of anecdotal reasoning on people’s health care decisions: is a picture worth a thousand statistics? Med Decis Making 2005;25:398–405.