CONCURRENT PRESENTATIONS OF TOP RATED ABSTRACTS I: PREFERENCE AND DECISION MAKING
* Finalists for the Lee B. Lusted Student Prize
To compare the effects of two forms of decision support: a pharmaceutical industry FDA endorsed decision guide (Pharm Booklet) and International Patient Decision Aids Standard (IPDAS) compliant patient decision aids (PtDA) on patient medication beliefs and choice to intensify therapy.
We conducted a mail survey of 797 biologic naïve rheumatoid arthritis (RA) patients in a community rheumatology practice. Patients were presented with a hypothetical decision scenario where they were asked to consider adding EnbrelTM (etanercept) to their current regimen. Each patient was randomized to review 1 of 3 forms of etanercept specific decision supports: a long PtDA (LONG DA), a short PtDA (SHORT DA), or the manufacture’s FDA endorsed Enbrel™ decision guide (Pharm Booklet). Each subject was evaluated for: their decision to intensify therapy, beliefs about etanercept viewed through the Integrated Model of Behavioral Prediction, pre and post intervention etanercept related knowledge, and decisional conflict.
402 biologic naïve RA patients participated (response rate 52%). 30.6% of patients randomized to Pharm Booklet elected to initiate etanercept. Only 14.6% and 14.0% of patients who reviewed the LONG DA or SHORT DA choose to take etanercept (χ2=15.7; P<.001). There was no difference in decisional conflict between groups. A binary logistic regression model explained 44.2% (R2= .442) of patient choice to intensify therapy by initiating etanercept. The strongest predictors of choice to intensify therapy were beliefs about etanercept: Improve Symptoms (OR = 2.55 95% CI:1.71, 3.80), Social Normative Beliefs about intensifying therapy with etanercept (OR = 2.24, 95% CI: 1.49, 3.35), and risk of Adverse Event (AE) (OR= 0.59 95% CI: 0.39, 0.89). The LONG and SHORT DA produced a significantly greater increase in relevant knowledge, but the increased knowledge and feeling of being informed did not impact patient beliefs about etanercept, decisional conflict or their choice to intensify therapy.
Patients supported by the Pharm Booklet were twice as likely to choose to intensify therapy. Our study suggests that the choice architecture and persuasive content in the PHARM Booklet communicates a descriptive norm regarding initiation of etanercept. The descriptive norm increases patient belief of effectiveness and likelihood to follow a physician recommendation to intensify therapy.
Structured review to examine how groups recommending cancer prevention services present the benefits and harms of the services they recommend.
We reviewed all recommendation statements related to cancer prevention from the United States Preventative Services Task Force (USPSTF), excluding ‘I’ statements and pediatric or counseling guidelines. Next, we searched within the National Guidelines Clearinghouse (NGC) for all discrete guidelines developed by US organizations on the same topics. We also searched a widely-used point-of-care clinical resource that makes recommendations [UpToDate© (UTD)]. Finally, we identified recommendations for the use of the preventive service in a particular population (positive recommendations) for analysis. Two coders independently abstracted basic guideline demographic data and information about how benefits and harms were presented. We gave a transparency rating for each positive recommendation based on benefit-harm presentation (Green, Yellow, or Red transparency rating as below).
49 guidelines were included (11 from USPSTF; 27 from NGC; and 11 topics from UTD). 55 positive recommendations were identified within these guidelines. Among the positive recommendation statements, 24% (n=13) received a green rating -- presenting absolute risks for both benefits and harms so that the trade-offs could be directly compared. 18% (n=10) received a yellow rating because they did not quantify the potential benefit – thus, the chance benefit and harm could not be directly compared. 58% (n=32) received a red rating due to an inadequate or imbalanced presentation of benefits and harms: 14 because they made a recommendation for a service without even mentioning what the potential benefit might be; 5 because they mentioned the benefit but did not mention the possibility of any harms; 7 because they quantified the benefit and mentioned but did not quantify the harms; and 6 because they quantified the benefits in terms of a relative risk reduction (larger number) while quantifying the harms in terms of absolute risk increase (smaller number), a practice known as mismatched framing.
Transparency is uncommon in guidelines recommending cancer screening and prevention services. Groups recommending cancer screening and prevention interventions for asymptomatic individuals should be obligated to clearly present absolute estimates for the chance of benefit and harm. Transparent risk information would enable clinicians and policy-makers to better understand the trade-offs and support shared decision making.
Method: We surveyed 295 obstetrician-gynecologists about management decisions for periviable preterm premature rupture of membranes. Across 9 vignettes, we systematically varied 4 patient characteristics: gestational age (GA; 22/23/24 weeks); occupation (janitor/corporate manager); method of conception (spontaneous/IVF); and patient resuscitation preferences (comfort/resuscitation/undecided). Patient race (black/white) was randomly assigned, varying across, but not within, surveys. Physicians rated their likelihood of proceeding with 4 management decisions (offer induction; order steroids; cesarean for labor; cesarean for distress) from 0 (Definitely would not) to 10 (Definitely would). Data were analyzed via conjoint analysis.
Result: 205 were included in the final analysis. 64.9% of study participants were female; 92.2% Generalists, 4.4% MFM; and 29.8% practiced in the Northeast. Median ratings for each management decision were: induction 1.89; steroids 5.00; cesarean for labor 3.89; cesarean for distress 4.11. Gestational age had the largest influence on physician ratings for all 4 decisions. Parental resuscitation preference was second most important. Provider and practice setting characteristics that influenced decision-making included: age, sex, parenting status, malpractice history, region of practice, and resident supervision (all p<.05).
Conclusion: Our findings suggest that gestational age is weighted more heavily than patients’ resuscitation preferences in obstetricians’ decision-making for periviable delivery management. Given the poor outcomes and value-laden nature of periviable decision-making, patient resuscitation preference should arguably be the primary factor guiding decision-making. Interventions are needed to facilitate shared decision-making and promote patient-centered periviable care.
Method: A Markovian model is utilized to estimate survival and quality adjusted life years (QALYs) for different treatments. Stochastic sensitivity analysis is done to obtain confidence intervals of the estimates. Since the confidence intervals for different treatments could overlap for most of the patients, we estimate the probability of being the best treatment option for each treatment. We simulate newly-diagnosed patients to get population-based results.
Result: Our initial computational experiments focus on patients’ preferences about erectile dysfunction. Assuming other side effects has no QoL impact on patients, when erectile dysfunction doesn’t matter to the patients (QALY decrement is 0), more than 99% of the simulated patients’ best choice is RP or EBRT. When QALY decrement for erectile dysfunction increases to 0.2 QALYs each year, 47% of the simulated patient’s best choice is AS, while 12%, 21%, and 20% should choose RP, EBRT, and BT, respectively.
Conclusion: Patients’ preferences on QoL tradeoffs about side effects after treatment is could significantly shift their choice of primary treatment. Therefore, it is very important to help patients understand their own preferences during the shared decision making process for localized prostate cancer patients. Further experiments are needed to uncover how other side effects and their combinations could shift patient’s treatment choices.
Purpose: Aggressive treatment of inflammatory bowel disease (IBD) often involves immunosuppressant therapies with potential for serious adverse events (SAEs) including infection and lymphoma. Willingness to accept increased SAE risks to prevent future relapses can vary among patients. We test the hypothesis that patients with current active disease are less tolerant of therapeutic risks for treatments to prevent future relapses than patients whose disease currently is in remission.
Methods: IBD patients completed a discrete-choice experiment survey consisting of choices between pairs of constructed IBD therapies. Each treatment profile was defined by three attributes that varied within a predefined range: risk of lymphoma (0%-1%), risk of infection (0%-40%), and time to next IBD relapse (0-10 years). Random-parameters logit was used to estimate patients' willingness to accept tradeoffs among treatment features in selecting medication therapy to avoid future disease relapses.
Results: Patients currently in remission placed greater importance on delaying future relapses than patients with self-reported active symptoms, and asymptomatic patients were willing to accept approximately twice the chance of severe infection and lymphoma to delay a relapse for 5 years compared to patients with active symptoms (Figure 1). Respondents who failed risk comprehension tests showed inconsistent and disordered preferences which significantly altered preference results if included in the model.
Conclusions: Patients, particularly those in remission, are willing to accept significant therapeutic risks to avoid relapses for extended periods of time. Differences between patients in remission and patients with active disease are consistent with utility-theoretic predictions that risk equivalents for a given benefit are larger for individuals at higher reference levels of utility than at lower reference levels. Patients in remission may be averse to losses in health status, while symptomatic patients may have adapted to living with active symptoms and therefore value future relapses less strongly. It also is possible that symptomatic patients stated risk intolerance indicates some degree of scenario rejection because their current treatment is failing to control their IBD symptoms. Preference results are sensitive to risk framing and respondent comprehension; respondent comprehension must be assessed and controlled for during analysis.
Figure 1: Maximum acceptable risks associated with 5 year delay of next relapse
Method: A discrete choice experiment was administered to 138 patients with advanced cancers and their caregivers in which they were asked to choose between two EOL care scenarios. Each scenario was described through 7 attributes with between 2 and 4 levels for each: severity of pain, amount of care required from family-members or friends, expected length of survival, quality of health care experience, expected cost of treatment from diagnosis to death, source of payment, and place of death. Ten scenarios were presented to each respondent. Annual willingness to pay (WTP) for specific EOL improvements was estimated for patients and their caregivers. Attribute importance was assessed for each respondent and proportion of dyads in which patients and caregivers matched on their top and bottom ranked attributes was calculated.
Result: Caregivers had a greater WTP for specific EOL improvements compared to patients. Only 28% of the patient-caregiver dyads matched on their topmost EOL attribute, which was most commonly place of death. Similarly, 27% of the dyads matched on their bottom ranked attribute, which was most commonly care required from family-members or friends.
Conclusion: Patient’s priorities for EOL treatments systematically differ from those of their caregivers. As a result, caregivers are likely to make decisions that are not consistent with the patient’s wishes. To the extent possible, physicians should work to ensure that patient’s preferences are elicited as opposed to relying on the recommendations of caregivers when it comes to EOL treatment.