FRI0712-HPR The experience of patients with different chronic diseases with health care. a survey with the iexpac instrument
2018
Background: Insights from patients are important for health care planning Objectives: In this study we describe the perception of patients with 4 different chronic conditions with health care in Spain through the IEXPAC scale (“Instrument to Evaluate the EXperience of PAtients with Chronic diseases” ), a scale developed and validated in Spain. Methods: The IEXPAC scale (http://www.iemac.es/iexpac/) was developed and validated in Spain by health care professional and social organizations, experts in quality of health care and chronic patients. The scale is structured in 12 items with Likert responses from “always” to “never”, yields a score from 0 (worst experience) to 10 (best experience), and identifies aspects of health care needing improvement. A survey was handed to patients needing care in at least two different levels (i.e. primary care and hospital) and with one of the following chronic conditions A) Rheumatic diseases, B) Inflammatory bowel disease (IBD), C) Human immunodeficiency virus infection (HIV) and D) Diabetes mellitus (DM) plus cardiovascular or renal chronic disease. Patients completed the survey at home and responded by pre-paid mail. Results: 2474 patients received the survey, 1618 (65.4%) returned it (359 with rheumatic disease, 341 with IBD, 467 with HIV infection, 451 with DM, mean age 56 years, 41% women). Only 6.1% were affiliated to a patients association. Patients declared a median of 8 visits (IQR 25–75: 4–15) to primary care or specialty clinics in the last year and 29% had visited an emergency room. In the last 3 years 48% had been hospitalized. Up to 61% reported to search for information on diseases, therapies, lifestyle or diet in webpages, general or social media. Responses to the IEXPAC items (percentages that responded “mostly” + “always” to each item) are displayed in the table. In general, these % were higher in HIV patients, which represents a better experience with health care. In some items, patients with rheumatic diseases scored lower (table 1). Mean IEXPAC score was 6.0 (SD1.8) and was higher in HIV patients (table 1). Worst scores were seen in items related to access or guidance for getting reliable information on health and on social resources, contact with other patients and follow-up after hospital discharge. Conclusions: The IEXPAC questionnaire identified areas of improvement in chronic patients health care in Spain, especially those related with access to reliable information and services, interaction with other patients and continuity of health care after hospital discharge. Patients with HIV infection scored higher, maybe consequence of a more personalized care. In several items, patients with rheumatic diseases scored lower Acknowledgements: Funded by Merck Sharp & Dohme, Spain, with endorsement of 4 patients associations: CONARTRITIS (patients with rheumatid diseases), ACCU (patients with IBD), SEISIDA (HIV multidisciplinary group), FEDE (patients with DM) Disclosure of Interest: None declared
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