Linda Ternrud- Institutionen för kliniska vetenskaper, Lund

Title: Fatigue in Adults with Congenital Heart Disease

Main supervisor: Joanna Hlebowicz MD, Associated Professor Division of Cardiology Department of Clinical Sciences Lund University

Reviewers: Andreas Edsfeldt MD, Associate Professor Marlene Malmström RN, Associate Professor

Abstract

Background

Adults with congenital heart disease (ACHD) constitute a growing and aging population due to advances in care, although most of the patients cannot be considered cured. Fatigue can be observed clinically in ACHD but the prevalence of fatigue and the impact on the patient’s daily life has been poorly studied.

Aims

1. To assess the prevalence of five dimensions of fatigue in ACHD using the Multidimensional Fatigue Inventory (MFI-20) and to evaluate reliability of MFI-20.
2. To investigate possible associations between fatigue and various clinical characteristics.
3. To compare the prevalence of fatigue in ACHD aged > 40 years with healthy controls and to explore associations between fatigue, heart defect complexity, clinical characteristics and experienced limitations in physical activity. Reliability test of MFI-20.
4. To describe the cognitive function including mental fatigue in ACHD > 40 years.

Methods

1. A cross-sectional study using MFI-20 in patients at Skåne University hospital in Lund and Umeå University Hospital.
2. A retrospective study examining clinical characteristics of participants from study I who reported high levels of fatigue.
3. A Swedish multicenter cross-sectional sub-study of APPROACH IS II using different questionnaires including MFI-20.
4. A Swedish single center cross-sectional sub-study (Lund) of APPROACH IS II using a battery of neuropsychological tests.

Preliminary results

1. The study participants experienced relatively high levels of fatigue across all dimensions except for reduced motivation. General fatigue was the most prevalent dimension, particularly among patients with one type of complex heart defect. MFI-20 demonstrated a high reliability.
2. No results available.
3. Patients with complex heart defects reported highest levels of fatigue in all five dimensions. They also reported high levels of experienced limitations in physical activity. Physical fatigue was associated with defect complexity, heart failure, NYHA-class and oxygen levels. MFI-20 had a high reliability.
4. Preliminary results indicate a relatively high prevalence of cognitive dysfunction in ACHD adults > 40 years.

Significance

ACHD experience fatigue at relatively high levels and particularly patients with complex heart defects potentially impacting their activity levels. MFI- 20 can be used as a PRO in studies and in clinicals settings for ACHD.

Published studies

1. Ternrud L, Hlebowicz J, Sandberg C, Johansson B, Sparv D. Prevalence of fatigue in adults with congenital heart disease. Cardiol Young. 2021:1-8.
2. Analyses in progress.
3. Manuscript in progress.
4. Analyses in progress.