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Abstract
The aim of this cross-sectional study was to examine the prevalence of the multidimensional phenomenon of fatigue in adults with congenital heart disease. Adults with congenital heart disease are a growing population, and patient-reported outcomes can provide valuable information about the patient's experience of living with CHD. Fatigue is a multidimensional phenomenon that can be described as an overwhelming feeling of exhaustion with a reduced capacity of mental and physical work. Fatigue can be observed clinically in adults with congenital heart disease, but the actual prevalence is unknown. Fatigue was assessed by the Multidimensional Fatigue Inventory which enables the respondent to report the presence of fatigue according to five dimensions: "general fatigue," "physical fatigue," "mental fatigue," "reduced motivation," and "reduced activity." The questionnaire was sent to 463 patients in Lund and Umeå. Four groups with complex CHD and two groups with moderately complex CHD were included. The reliability (internal consistency) of the Multidimensional Fatigue Inventory was tested for all dimensions and groups of diagnosis. The response rate was 56.6% (n= 262). In patients with complex CHD, 40.0-59.4% reported severe to very severe general fatigue, and patients with a single ventricle reported the highest prevalence (59.4%). Among patients with complex CHD, 29.2-40.0% reported severe to very severe mental fatigue. The Multidimensional Fatigue Inventory had a high reliability measured with Cronbach's alpha. The study findings show a relatively high prevalence of fatigue in adults with congenital heart disease, and general fatigue was the most prevalent. Further studies are needed regarding fatigue and its causes and consequences in adults with congenital heart disease. The Multidimensional Fatigue Inventory proved to be an instrument with high reliability and low internal loss, which suggests that the instrument may be suitable to use as a patient-reported outcome in the care of adults with congenital heart disease, preferably at repeated occasions.
Highlights
The patients were identified by the Swedish Registry of Congenital Heart Disease (SWEDCON) which is a national registry that consists of four parts: foetal heart diagnostics, paediatric cardiology, adults with congenital heart disease, and congenital heart surgery
The Multidimensional Fatigue Inventory was sent to 463 patients
This study demonstrates to what extent adult patients with certain moderately complex and complex heart defects experience different dimensions of fatigue
Summary
The questionnaire was sent by postal mail to 463 adult (age >18 years) patients with a planned follow-up at Skåne University hospital in Lund, Sweden (n = 307) or Umeå University Hospital, Sweden (n = 156). The purpose of the register is to provide information about the natural course and treatments for different congenital heart conditions. Median age of the included patients was 32.5 years (IQR 17.3); 63.9% (n = 296) were men, and 36.1% (n = 167) were women. The participants were reminded after 3–4 weeks by phone, and those who were not reached at that time received a new questionnaire by postal mail
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