Exploration of disagreement between the patient’s self reported limitations and limitations assessed by caregivers in adults with congenital heart disease

• 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.

Ämnesord

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap -- Omvårdnad (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences -- Nursing (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Klinisk medicin -- Kardiologi (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Clinical Medicine -- Cardiac and Cardiovascular Systems (hsv//eng)

MEDICIN OCH HÄLSOVETENSKAP  -- Hälsovetenskap (hsv//swe)

MEDICAL AND HEALTH SCIENCES  -- Health Sciences (hsv//eng)

Nyckelord

congenital heart disease adult caregivers self-report

Vårdvetenskap

Nursing science

Publikations- och innehållstyp

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