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  FAQ Type : Domain Framework (1) | | Question : What is a Domain Framework? (1) | | Domain Framework | | A domain map that portrays the structure of each target domain and its conceptual framework or, where applicable, hierarchical structure. | | | FAQ Type : Item Banks (2) | | Question : What is an 'Item Bank'? (1) | | Item Banks | | An item bank is comprised of carefully calibrated questions that provide an operational definition of a trait or construct (Revicki & Cella, 1997; Bjorner, Kosinski, & Ware, 2005). A good bank covers the entire continuum of the latent trait being measured, capturing different severity levels along the continuum (Lai et al., 2003). A well-calibrated item bank makes it possible to compare the amount of a given trait for patients who complete different sets of questions in the bank. Not only does this allow for "adaptive" testing, because all items are calibrated into one common scale, but it also makes it possible to compare HRQOL results across diverse groups of patients and item sets. At a given difficulty level, any chosen item should provide the maximum amount of information to estimate a patient's score on the HRQOL domain of interest (Wainer & Mislevy, 2000).
Because the content of questions at comparable difficulty levels may vary in clinical relevance, it is possible to select an item within a given difficulty level according to its clinical relevance. Specific items can thus be selected from among those in the bank to maximize precision of the estimate and clinical relevance of the questions. With CAT, collaborative interaction between clinicians and programmers of the algorithm allows one to select the best set of items to obtain an estimate. | | | Question : What is an 'Item'? (1) | | Item Banks | | A question (including its response choices) in a survey. | | | FAQ Type : Short Forms (1) | | Question : What is a 'Short Form'? (1) | | Short Forms | | A parsimonious subset of items selected from a full item bank to yield an accurate estimate at a targeted range of the measured domain. | | | FAQ Type : User Information (9) | | Question : How can my site become involved with Neuro-QOL? (1) | | User Information | | We are seeking sites that have access to any of the following adult and pediatric neurological conditions (see attachment for Table 1) to assist in field testing our Neuro-QOL short forms at baseline, 7 days and 180 days.
|  | | Question : How many participants would my site need to recruit? (1) | | User Information | | Please let us know how many patients your site/department sees annually and then we can discuss specific recruitment goals once we have estimated the expected contributions across all recruitment sites. | | | Question : Is there someone who can assist us with our IRB submission? (1) | | User Information | | Yes. We have available staff who can assist in this process. | | | Question : What are the inclusion/exclusion criteria or other selection criteria to consider? (1) | | User Information | | Inclusion Criteria:
Children - 12-18 years; proportional breakdown of males and females according to US incidence rates; English speaking; diagnosed with Epilepsy or Muscular Dystrophy; proxies of children with epilepsy or muscular dystrophy
Adults - 18>; proportional breakdown of males and females according to US incidence rates: English speaking; diagnosed with Stroke, MS, ALS, Parkinson's Disease, Epilepsy; proxies of patients with stroke
Exclusion Criteria: Younger/older than the age limits; non-English speaking; Cognitively impaired (as determined by recruiting staff). | | | Question : What is the proposed method of recruitment? (1) | | User Information | | Primarily in clinic, but other methods (e.g., phone, letter, internet) are acceptable. | | | Question : What is your time frame for recruitment? (1) | | User Information | | Though this testing isn't slated to occur until sometime in August of 2008, we wish to begin securing sites starting January 2008 to ensure adequate time for site training and preparation. | | | Question : What specifically will you be asking subjects to do and how long will it take? (1) | | User Information | | Assessments will typcially last 60-90 minutes and will involve interviews administered by Computer Assisted Self Interview (using a variety of administration technologies). In addition to the item banks and disease specific scales, a battery of additional measures will be given during field testing. These will include cross-disease measures, sociodemographic and clinical questionnaires, and well known anchor measures. | | | Question : Who will administer the measures? (1) | | User Information | | A trained on-site research coordinator will conduct the computer assisted self-interview, however, he/she should also be available to enter the data if the participant is unable or unwilling. | | | Question : Would any personnel from the Neuro-QOL project be dedicated to subject recruitment and data collection? (1) | | User Information | | No. We would provide your site with all necessary paperwork, assent/consent form preparation, assistance with IRB paperwork and submissions, etc. but we would need site assistance in terms of having a dedicated person to physically staff clinics to screen and recruit potential candidates and provide an appropriate location to conduct the interviews. | |
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