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Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease
University West, Department of Health Sciences, Section for nursing - graduate level.ORCID iD: 0000-0002-4181-695x
Umea University, Department of Public Health and Clinical Medicine, Umea, Sweden.
Karolinska University Hospital, Department of Cardiology, Stockholm, Sweden.
The Sahlgrenska Academy at Gothenburg University, Institute of health and caring sciences, Gothenburg, Sweden;.
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2018 (English)In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, no Suppl 1, article id 2406Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Background: The New York Heart Association (NYHA) classification is applied in a wide spectrum of heart diseases including adult patients with congenital heart disease (ACHD). The NYHA-class assessment is often based on the evaluation by the caregiver, but to what extent it correlates with the patient's view of their function is not fully known.Purpose: To investigate the relation between the patient's self-reported physical limitations, symptoms, other heart defect related factors and NYHA-class assessed by the caregiver.Methods: Eligible patients (n=333, age 39.2±13.6 years) were identified and randomly selected from the national registry for CHD. All of the patients completed a standardized questionnaire measuring different PRO-domains. By combing self-reported data with registry data including NYHA-class, analyses of agreement of physical limitations were performed.Results: Almost 30% of the patients rated their limitations higher compared to the NYHA-class estimated by the caregiver. Patients with self-reported limitations and their NYHA-class underestimated by caregivers, more often reported symptoms, anxiety, lower health and worked fewer hours/week compared to other patients with CHD. There were no differences regarding sex, type of symptoms, prescribed medications, or complexity of cardiac lesion. In patients without self-reported limitations agreement with NYHA-class estimated by caregivers was 97%.Conclusion: Adult patients with CHD and self-reported limitations may not be correctly identified by the care-giver. Instruments for patient reported outcomes might improve the assessment of physical limitations and could further improve the correctness in evaluating the patient's status.

Place, publisher, year, edition, pages
2018. Vol. 39, no Suppl 1, article id 2406
Keywords [en]
congenital heart disease adult caregivers self-report
National Category
Nursing
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-13732DOI: 10.1093/eurheartj/ehy565.2406ISI: 000459824001478OAI: oai:DiVA.org:hv-13732DiVA, id: diva2:1297937
Funder
Swedish Heart Lung FoundationAvailable from: 2019-03-21 Created: 2019-03-21 Last updated: 2019-07-25Bibliographically approved

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