This re-application addresses an issue fundamental to health care and cost-effectiveness analysis: how disease appears to those who have it and those who do not. The principal investigator does not describe specific aims but identifies the """"""""primary purposes"""""""" of the proposed project as follows: 1) To obtain ratings of the utility of various health conditions from patients who have those conditions and from nonpatients, and to examine discrepancies between the two groups, 2) To explore possible reasons for these discrepancies; and 3) to test how alternative utility measures affect the size and direction of the discrepancy, and the reliability and validity of utility assessment. The investigators propose 6 projects to pursue the three purposes and have established some general methods. These methods include identification of unaffected individuals by random digit dialing among people living in the catchment area for the University of Pennsylvania Health System (UPHS). Affected individuals will be identified through a data system used by the UPHS. All studies involve surveys. In 5 studies (#1,3,4,5,6) individuals will be surveyed by telephone, and in one study (#2) the interviews occur face to face. Each study will begin with a pilot phase when instruments and techniques are clarified. Then data collection, and analysis occur. The studies overlap in time but the pilot phases are sequential. A contract firm (TNS Intersearch) will conduct the surveys. The methods for each study will be the same for affected (patients) and unaffected (non-patients) individuals. The measures for all studies include utilities, quality of life, comorbidity, and demographic characteristics. Each study explores an aspect of the discrepancy between how affected and unaffected individuals estimate the utility of a disease. The investigators will measure utilities in three ways as noted below but in all studies they will use one common numeric rating from 0 (death) to 1 (complete health). The specific studies will vary how they measure utilities such that every study except #6 will include at least two utility measurements in affected and unaffected individuals. Quality of life will be measured using the SF-12 and the use of this shortened form is well justified by the research team. Comorbidity measurement will occur using a survey adaptation of the Charlson index. The studies themselves are described briefly below. Study 1 will evaluate how disease utilities change over time in the disease condition. Unaffected individuals will be asked to evaluate the utility at different points in time-since-diagnosis. The investigators will compare these estimates to those made by a longitudinal sample of newly diagnosed patients, and cross sectional samples of other patients. Study 2 will use in-person interviews to evaluate how subjective well being differs from severity of illness. The investigators will randomize subjects into one of three groups that will then be asked to rate conditions on an unanchored (eg. 1-100), anchored (0=death, 100= full health), and two rating scales the individual develops. The individually developed scales will be based first on the severity of the disease, and then on the happiness the person would experience if they had that disease. Study 3 will evaluate the effect of focusing on how the condition will affect certain activities while ignoring how it will not affect others. Affected and unaffected individuals will be randomized to one of two groups and given descriptions of a condition. The affected individuals will be given a description of their illness in a specific state of severity. Individuals randomized to one group will start by rating the utility of the condition, then rate the importance of several life domains (i.e. recreation, work etc.) and the effect of the condition on those domains (de-focusing). Finally they will re-rate the utility of the condition. The individuals randomized to the second group will not provide the initial utility rating. Study 4 will test how descriptions of conditions affect the utilities identified by affected and unaffected individuals. The investigators will collect verbal descriptions of diseases by patients with those conditions and by their physicians. The descriptions will be written out and then used in the study. Study 5 will test the effect of asking individuals to rate diseases as if they had them or as if some other person had them. Study 6 will test how the verifiability of a condition (ease with which it can be explained), the uncertainty of the prognosis, and the diffuse or narrow effects of the conditions influence the utilities assigned. In all six studies the authors propose specific hypotheses for the how affected and unaffected individuals will differ in their estimates of utilities. In most cases the hypotheses will be tested using two-way ANOVA with elicitation method and respondent population as the factors, and the significance of an interaction between respondent population and elicitation method as the statistical test. It is not clear how the quality of life, and comorbidity measures will be used in these models.
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| Lacey, Heather P; Loewenstein, George; Ubel, Peter A (2011) Compared to what? A joint evaluation method for assessing quality of life. Qual Life Res 20:1169-77 |
| Johri, M; Damschroder, L J; Zikmund-Fisher, B J et al. (2009) Can a moral reasoning exercise improve response quality to surveys of healthcare priorities? J Med Ethics 35:57-64 |
| Smith, Dylan M; Loewenstein, George; Jankovic, Aleksandra et al. (2009) Happily hopeless: adaptation to a permanent, but not to a temporary, disability. Health Psychol 28:787-91 |
| Smith, Dylan; Loewenstein, George; Jepson, Christopher et al. (2008) Mispredicting and misremembering: patients with renal failure overestimate improvements in quality of life after a kidney transplant. Health Psychol 27:653-8 |
| Lacey, Heather P; Fagerlin, Angela; Loewenstein, George et al. (2008) Are they really that happy? Exploring scale recalibration in estimates of well-being. Health Psychol 27:669-75 |
| Damschroder, Laura J; Zikmund-Fisher, Brian J; Ubel, Peter A (2008) Considering adaptation in preference elicitations. Health Psychol 27:394-9 |
| Smith, Dylan M; Brown, Stephanie L; Ubel, Peter A (2008) Mispredictions and misrecollections: challenges for subjective outcome measurement. Disabil Rehabil 30:418-24 |
| Smith, Dylan M; Loewenstein, George; Rozin, Paul et al. (2007) Sensitivity to disgust, stigma, and adjustment to life with a colostomy. J Res Pers 41:787-803 |
| Damschroder, Laura J; Roberts, Todd R; Zikmund-Fisher, Brian J et al. (2007) Why people refuse to make tradeoffs in person tradeoff elicitations: a matter of perspective? Med Decis Making 27:266-80 |
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