Measuring satisfaction with health care in young persons with inflammatory bowel disease -an instrument development and validation study
1 Division of Paediatric Gastroenterology & Hepatology, Dr. v. Hauner Kinderspital, Ludwig Maximilian University of Munich, Lindwurmstr. 4, D-80337 Munich, Germany
2 Department of Clinical Epidemiology, Leibniz Institute for Prevention Research and Epidemiology – BIPS, Achterstr. 30, 28359 Bremen, German
3 German Association Morbus Crohn / Colitis ulcerosa (DCCV) e.V., Bundesgeschäftsstelle, Inselstraße 1, 10179 Berlin, Germany
4 Klinikum Links der Weser, Klinik für Kinder- u. Jugendmedizin, Senator-Weßling-Str. 1, 28277 Bremen, Germany
5 Berufliches Schulzentrum Amberg, Abteilung Nahrung und Gesundheit, Raigeringer Str. 27, 92224 Amberg, Germany
6 Department of Health Services Research, Division of Epidemiology and Biometry, Carl von Ossietzky University Oldenburg, D-26111 Oldenburg, Germany
BMC Health Services Research 2014, 14:97 doi:10.1186/1472-6963-14-97Published: 1 March 2014
Patient satisfaction is a relevant prognostic factor in young persons with chronic disease and may be both age and disease specific. To assess health care quality from the patient’s view in young persons with inflammatory bowel disease, an easy to use, valid, reliable and informative specific instrument was needed.
All parts of the study were directed at persons with inflammatory bowel disease aged 15 to 24 (“youth”). A qualitative internet patient survey was used to generate items, complemented by a physician survey and literature search. A 2nd internet survey served to reduce items based on perceived importance and representativeness. Following pilot testing to assess ease of use and face validity, 150 respondents to a postal survey in patients from a paediatric clinical registry were included for validation analyses. Construct validity was assessed by relating summary scores to results from global questions on satisfaction with care using ANOVA. To assess test-retest reliability using intraclass correlation coefficients (ICC), a subset of patients were assessed twice within 3 months.
302 persons with IBD and 55 physicians participated in the item generating internet survey, resulting in 3,954 statements. After discarding redundancies 256 statements were presented in the 2nd internet survey. Of these, 32 items were retained. The resulting instrument assesses both the perceived relevance (importance) of an item as well as the performance of the care giver for each item for calculation of a summary satisfaction score (range 0 to 1). Sensibility testing showed good acceptance for most items. Construct validity was good, with mean scores of 0.63 (0.50 to 0.76), 0.71 (0.69 to 0.74) and 0.81 (0.79 to 0.83) for no, some and good global satisfaction (ANOVA, p < 0.001). Test-retest reliability was satisfactory (ICC 0.6 to 0.7).
We developed an easy to use, patient oriented, valid instrument to assess satisfaction with care in young persons with IBD for use in survey research.