ORAL ABSTRACTS: PATIENT PREFERENCES
Individuals often have to make proxy decisions on behalf of an elderly or child dependent. We examined whether utilities assessed on behalf of dependents differed by whether the dependent was real or imagined.
Utility data were obtained from subjects in the Chicago and Indianapolis metropolitan areas for a study intended to assess public perceptions of the utility of health states for themselves and others at different ages (child and elderly). Utility estimation was performed by two methods: standard gamble and time trade-off for four health states (diabetes, severe bilateral vision loss, severe seizure disorder, and severe mental impairment). Estimation was performed for both the subject and either a child dependent, an elderly dependent, or both. For each type of dependent, if the subject had one or more real dependents, a dependent was selected at random and the subject was instructed to estimate utility as a proxy for that dependent. If the subject had no dependent, they were asked to consider an imaginary dependent. For each dependent and each health state, utility distributions were compared for a null hypothesis of either equivalent means or medians, using Welch two sample t test and Mood’s median test. The main outcome of interest was whether utility values differed when considering an imaginary or real dependent.
Utilities were assessed for 165 imaginary children, 427 real children, 242 imaginary elderly, and 123 real elderly dependents. Comparing the utility distributions for each health state between an imaginary and real dependent yielded no statistically significant differences. This was consistent for both null hypotheses.
Preferences for proxy decision making quantified by utilities show no difference between subjects having an imaginary or real dependent for each of the four health states of diabetes, severe bilateral vision loss, severe seizure disorder, and severe mental impairment. Because utility assessment for policy decisions are often done on the general public, it is important that utilities (on average) do not appear to differ between those with real versus imagined dependents.
Method(s): We conducted a multicentre discrete choice experiment (DCE) in six Dutch medical centres. Recently diagnosed BCC patients had to choose between 3 different BCC follow-up scenarios, with variation in the following attributes: ‘type of health care professional’, ‘whether the first post-treatment follow-up was conducted by the same treating health care professional’, ‘frequency of follow-up visits’, ‘duration of the follow-up visit’, and ‘how much of the skin was inspected’. The costs of the follow-up visits were provided based on real-life scenarios. A latent class model was used to analyse the DCE data.
Result(s): The questionnaire was completed by 265 BCC patients (71.4% response rate). In general, respondents accepted fewer BCC follow-up visits and were willing to go to their general practitioner (GP) in case questions raised or reassurance was requested (P<0.01) under the condition that 1) the first post-treatment follow-up was conducted by the same health care professional who has treated the patient, and 2) the patient received a customised letter with concrete and personalised information about the BCC, treatment and prognosis. There was significant preference heterogeneity: lower educated men preferred receiving no follow-up after treatment for BCC (P<0.01) and were more willing to follow the guidelines, whereas high educated women with a history of BCC had a preference for frequently scheduled follow-up visits (P<0.05) and preferred follow-up visits with a full skin inspection by the dermatologist over visits to the GP (P<0.01).
Conclusion(s): BCC patients will accept fewer follow-up visits than in the current situation and are willing to go to their GP for follow-up, if the first post-treatment follow-up visit would be executed by the same health care professional who treated the patient, and if the patient would receive a letter containing concrete and personalised information. The preference heterogeneity shows that particularly high educated women with a BCC history may need more awareness and trust for fewer follow-up visits to be acceptable. Our results indicate that DCEs hold the potential to investigate how to reach optimal care in an efficient way and may help to avoid trial and error implementation to change medical practice.
Method(s): Patients taking part in two parallel clinical trials comparing diagnostic accuracy and cost-effectiveness of WB-MRI with standard tests for staging colorectal and lung cancer (Streamline C, UKCRN ID: 12770 and Streamline L, UKCRN ID: 12954) were sent two questionnaires to complete. One questionnaire was sent at baseline, at the point of registration to the trial (measuring age, gender, educational level, presence of comorbidities, and positive and negative mood using the PANAS), and the second at post-staging, following completion of diagnostic and staging scans (measuring beliefs about, and satisfaction with, the WB-MRI scan, and scan preference: WB-MRI vs. CT (colorectal) or PET-CT (lung)).
Result(s): 107 patients completed the post-staging questionnaire, and of these, 97 also completed the baseline questionnaire. Fifty-two percent of patients expressed a preference for WB-MRI and preference was unrelated to cancer type. People with higher positive mood scores at baseline, no comorbidities, a greater awareness of the potential benefits of WB-MRI, and lower levels of reported discomfort during the WB-MRI scan, were more likely to express a preference for the WB-MRI scan in unadjusted analyses. People who were younger and had some educational qualifications showed a non-significant trend towards a preference for the WB-MRI. In adjusted analyses, which included predictors that were significant or approached significance, only higher positive emotion scores on the PANAS (OR: 1.097; 95% CIs: 1.029 to 1.170; p=0.005) and greater belief in the benefits of WB-MRI predicted patient preferences for WB-MRI. Examination of the individual items showed awareness that WB-MRI does not impart a radiation dose was the item that predicted patient preference for WB-MRI (OR: 3.096; 95% CIs: 1.061 to 9.034; p=0.039), yet only 42% of patients were aware of this attribute.
Conclusion(s): Over half of patients undergoing staging scans for suspected colorectal or lung cancer would prefer to have a WB-MRI than CT/ PET-CT, and this did not differ according to cancer type. Raising awareness of the potential benefits of WB-MRI, in particular the fact it does not emit radiation, could increase patient preferences for this scan.
Method(s): An online survey using a full factorial design of EQ-5D-Y health states divided in 20 blocks was administered to two general representative population samples of adolescents and adults in Spain. An empirical scale parameter (ESP) as a measure of choice consistency was derived for each of the EQ-5D-Y domains (mobility, self-care, usual activities, pain/discomfort, sad/worry) and across the five domains for each participant and population. A sequential (first best then worst) heteroscedastic conditional logit was estimated to obtain part-worth utility values associated to each domain level in each population.
Result(s): 1,006 adults (range 18-over 55 years) and 1,000 adolescents (range 11-17 years) completed the online survey in February 2016. Pain/discomfort and being sad/worry were the most valued domains in both populations indicated by an evenly distribution of ESP in each domain. Not having problems to undertake usual activities was also valued by adolescents. The total ESP across the five domains suggested that adolescents exhibited a slightly larger proportion (16%) of choice inconsistencies with a total ESP<2 or total ESP>5 than adults (14%). The modelling results suggested that adolescents placed more weights on experiencing problems with mobility and pain/discomfort than adults. Adults place more weights on having problems with self-care and being worry/sad than adolescents.
Conclusion(s): Our results suggest that there seem to be age-related differences in elicitation values between adolescents and adults when valuing EQ-5D-Y health states corroborating previous exercises using other instruments. The similar levels of choice consistency between populations provide information about the feasibility of using the EQ-5D-Y as a potential instrument to obtain valuations using profile case BWS. Future work should explore whether our results hold using more sophisticated models to accommodate some of the preference heterogeneity observed in each population.
Method(s): A best-worst scaling (BWS) was conducted among 28 neurologists and 33 MS-specialized nurses experienced with the DMD decision. Twenty-seven DMD characteristics were evaluated in 17 choice tasks of 5 characteristics each, by asking respondents to choose the most and least important characteristic in the decision. Hierarchical Bayes analysis was used to obtain mean relative importance scores (RIS) per DMD characteristic between 0 and 100. Therefore, a RIS of 3.7 per characteristics would indicate that all characteristics are equally important in the decision. The results were compared with results of an earlier conducted BWS among 185 MS patients using t-tests or non-parametric tests on the characteristics’ RIS.
Result(s): According to the healthcare professionals, the effect of the DMD on disease progression and quality of life were most important (mean RIS: 9.5 and 9.2), in line with the patients’ preferences. For many other attributes, significant differences in RIS were found between patients and professionals, but absolute differences were small. Noteworthy, absolute difference for safety (risks of serious side effects that can be life-threatening or result in severe disabilities) was relatively large (RIS difference: 2.7), which resulted in safety being considered by healthcare professionals as third most important in the DMD decision compared to eighth most important for patients.
Conclusion(s): Healthcare professionals and MS patients overall agree about which DMD characteristics most influence the decision, but safety is, on average, more important for healthcare professionals compared to patients. Whether patients are more willing to take risk or whether healthcare professionals understand the risks better, safety should receive extensive attention in the shared decision-making process.