Background Fatigue in Systemic Lupus Erythematosus (SLE) is a highly prevalent symptom which has significant impact on patients' quality of life in general. We do not know yet how patients' fatigue affects their partners' life and in which way couples deal with fatigue symptoms.
Objectives Aim of this study was to compare the impact of fatigue on patients' and partners' life as individuals and to explore the impact on their life as a couple.
Methods This qualitative, cross-sectional study was conducted in 18 participants (9 heterosexual couples with one partner diagnosed with SLE). Inclusion criteria: The patient has to experience fatigue regularly and both partners have to be able to communicate in Dutch. Couples (patients: 8 women, 1 men, mean age 57 years, all experience severe levels of fatigue) were interviewed separately from each other with a semi-structured interview scheme, asking about the impact of fatigue on their life. Interviews were transcribed and categorized by inductive and deductive coding.
Results Patients reported impact of fatigue on daily activities, paid and unpaid work, cognitive functioning, social contacts and leisure time, emotional functioning and personality. Partners experienced the impact of patients' fatigue on their own daily activities, on the relationship with their partner, on social contacts, own emotional functioning, on their work, and also on future plans. Partners differed regarding the reported impact on their lives from patients. From the couples' perspective, two main themes with regard to coping with severe fatigue emerged. Communication and mutual understanding was described as essential to maintain or increase satisfaction with the partner relationship. The second theme was acceptance of fatigue symptoms and adaptation to the symptoms as best way to prevent tremendous impact of fatigue on the partner relationship.
Conclusions In several domains, patients and partners showed comparable impact of fatigue on their lives. Differences were found regarding prioritizing of affected domains and the impact on cognitive functioning, quality of partner relationship and future plans. Findings will be discussed in comparison with impact of fatigue on couples' life in other chronic diseases and with regard to options to support couples in dealing with fatigue in SLE.
Disclosure of Interest None declared