Assessment of health‐related family role functioning in systemic lupus erythematosus: Preliminary validation of a new measure

Abstract

Objective. Individuals with systemic lupus erythematosus (SLE) often experience symptoms that affect family relationships, which are important components of quality of life. To assess the impact of SLE on family role functioning, we developed a 6-domain (Fatigue, Activity participation, Mental health, Isolation, Love and intimacy, and You/fulfilling family roles [FAMILY]) measure. The objectives of this study were to pilot test and achieve preliminary validation for the SLE-FAMILY questionnaire.Methods. This was a 3-phase study. In phase 1 (development), domains were identified and items were generated for evaluation. During phase 2 (pilot test), a pilot test was conducted to assess the performance of candidate items. In phase 3 (initial validation), 52 individuals with SLE completed questionnaires, including the 6-item SLE-FAMILY. Data were analyzed for internal consistency reliability, and validity was assessed using correlations between the SLE-FAMILY questionnaire and well-validated measures. Results. The SLE-FAMILY had good test-retest reliability (0.82) and internal consistency (0.67). Reliability analysis of individual items revealed weakness in the performance of item 5. We reviewed raw data and determined that 9 individuals likely overlooked the reverse scoring of item 5, thus explaining its poor reliability. When these 9 individuals were excluded from analysis, Cronbach's alpha increased to 0.71, while test-retest reliability remained acceptable (0.75). Spearman's rho correlations supported the validity of the SLE-FAMILY measure. A pilot test of the SLE-FAMILY questionnaire without the reverse-scored item was conducted; results suggested that the modified version is superior to the initial form. Conclusion. The SLE-FAMILY questionnaire is a promising new instrument for robust measurement of family role functioning.

Patient-reported fatigue and its impact on patients with systemic lupus erythematosus

“…Some studies have focused on selected elements, or did not provide the level of detail reported here. 21–25 The level of detail reported here demonstrates one of the perceived benefits of using one-to-one, semi-structured concept elicitation interviews. This allows patients more time to describe the impact of SLE on their life, helps to avoid the potential for patients to be influenced by others, and the interviewer has more time to elicit additional information if not spontaneously reported.…”

“…In the development of the SLE-FAMILY (Fatigue, Activity participation, Mental health, Isolation, Love and intimacy, and You/fulfilling family roles) questionnaire, Hassett et al conducted brief interviews in the US where fatigue arose as an important theme for measuring development. 23 Sixty-five percent of patients reported fatigue as the most bothersome symptom of SLE and 90% reported it as problematic and as the predominant reason for not being able to participate in family activities. In another study, Swedish SLE patients described fatigue and reduced energy as strange, difficult to comprehend, ''paralyzing,'' and impossible to overcome with sleep, resulting in a negative impact on daily life activities and family relationships.…”

“…More recently, cross-sectional and longitudinal studies have explored fatigue in the context of patients with SLE. [21][22][23][24][25][26] Most of these qualitative-based studies found that fatigue was a commonly reported symptom with impact on the lives of patients. 22,26 Beckerman et al 22 reported physical and emotional impact of fatigue affected activities of daily living and personal relationships.…”

Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study

“…9,10 SLE can limit or interfere with a patient's way of life through alterations to participation at work or to leisure, family, or daily activities. [11][12][13][14] However, to date, few qualitative studies have been conducted to assess the nature of the impact of SLE, to study its variations across the different phases of the disease, and to consider jointly the individual, social, and societal aspects of this impact. These issues have never been conceptualized for SLE in the literature in terms of social participation (possibility of performing desired activities), although it appears to be a major outcome of autoimmune rheumatic diseases.…”

“…9,10 SLE can limit or interfere with a patient’s way of life through alterations to participation at work or to leisure, family, or daily activities. 11–14…”