Patient-Centered Item Selection for a New Preference-Based Generic Health Status Instrument: CS-Base

Abstract

To develop patient-centered health content for a novel generic instrument (Château Sant e Base [CS-Base]) that is suitable to generate values for health status. Methods: Candidate items were drawn from existing health frameworks of generic health status instruments and placed in a diagram (HealthFAN TM , Zeist, the Netherlands). Through an online survey, patients with a wide range of diseases were asked to select the 9 items that were most important to them. The importance of the items for the whole study group was determined by means of frequency distributions. Results: After handling duplicates and overlap, the remaining set of 47 items was placed in the HealthFAN. Among the 2256 Dutch patients who started the survey, the most common diagnoses were neck and back pain, diabetes, and asthma/chronic obstructive pulmonary disease. The 5 health items mentioned most frequently as most important were pain, personal relationships, fatigue, memory, and vision. Hearing and vision, anxiety and depression, and independence and self-esteem seemed highly intertwined, so we chose to pair these items. Conclusions: A total of 12 health items were included in CS-Base. Its content is largely based on patient input and enables classification of patients' health status. CS-Base can be administered by means of an app on a mobile phone, which makes it a convenient and attractive tool for patients and researchers.

Health items with a novel patient-centered approach provided information for preference-based transplant outcome measure

“…For example, like previous studies, we positioned activities of daily living within the physical domain of HRQOL, although the subdomain of activities (which consists of three other health items) is positioned within the social domain. We cannot know whether the grouping of items affected the way respondents selected the items that they considered most important to their health [22]. A limitation to this study might have to do with our application of a relatively straightforward HealthFan method, which is based largely on frequencies to select important health items.…”

“…This mobile application (app) is combined with a central server (www.healthsnapp.info), which runs our newly developed measurement model according to interactive software routines that are generic and flexible. The technology is capable of generating a value based on 3e18 health items [22,43,44]. Users (i.e., transplant recipients) will first be asked to rate their current health condition by ticking nine boxes representing the nine items derived in this study, until the descriptions in all of the boxes provide the best possible description of their current health.…”

“…In general, people can discriminate 7 (6 2) pieces of information at a time, and so most preference-based studies usually present no more than nine items [21]. That is probably the maximum amount of information people can process simultaneously [22].…”

An overview of the time trade-off method: concept, foundation, and the evaluation of distorting factors in putting a value on health

“…Nowadays, for most preference-based instruments values are provided by respondents from the general population. The trend is that patient's values will more and more be used [123][124][125][126]. 'If the public at large believes that those who experience health states are more reliable informants concerning the value of those health states, then the public would presumably choose to rely on these informants rather than on its own uninformed attitudes.'…”

“…Another recently introduced patient-centered valuation method uses patients' input on all stages: selection of items for the classification system, describing own health condition, and assigning a value to their own health condition. This system is based on a combination of item response theory and discrete choice methods [126,129].…”