PATIENT DRIVEN QUESTIONNAIRE DEVELOPMENT, ITEM FEEDBACK FROM USERS OF A PATIENT NETWORK
Author(s)
Castejón N1, Harrington M2, Campillo-Álvarez Á1, Rebollo P1
1LASER ANALYTICA, Oviedo, Spain, 2PatientsLikeMe, Cambridge, MA, USA
OBJECTIVES: CAT-Health is a generic health related quality of life computer adaptive test developed and validated in Spain. Based on its 96 item pool, a new instrument is being developed in English. The objective of the present study was to obtain substantial feedback from patients on the items, through Open Research Exchange platform, that centralizes PROM research and is integrated with PatientsLikeMe, an online community.. METHODS: The item pool was split in four sets of 24 items each. 750 patients with various conditions received an e-mail that included link to a survey open for 7 days. They were asked to answer one of the sets and give feedback on a 4 point scale for applicability, comprehensibility and appropriateness of the response options of each item. They were also encouraged to leave free-text feedback. RESULTS: A total of 218 subjects provided feedback, 61.47% female. Mean age was 55.78 years, with patients from 18-80 years, 40.37% between 55-65 years. The most represented conditions were Parkinson’s (27), Fibromyalgia (23), Multiple Sclerosis (20) and Rheumatoid Arthritis (19). The mean number of quantitative assessments per item was 55.74, while the mean number of comments was 11.64. Considering a cut-off of 2 points in the 0-3 scale, 18 items had low applicability, just one item had low comprehensibility and all items had appropriate response options. CONCLUSIONS: An impressive amount of feedback was obtained in just a week using the Open Research Exchange platform. The lowest scores were in applicability. However, as the items are destined to an adaptive test, some of them are very extreme (destined to severe cases). Therefore applicability was considered a secondary concern. With this caveat, quantitative feedback was very positive, and added to the great amount and detail of qualitative feedback suggest some changes that we think will greatly improve the instrument.
Conference/Value in Health Info
2014-11, ISPOR Europe 2014, Amsterdam, The Netherlands
Value in Health, Vol. 17, No. 7 (November 2014)
Code
PRM175
Topic
Methodological & Statistical Research
Topic Subcategory
PRO & Related Methods
Disease
Multiple Diseases