Assessing family role functioning in people with lupus

Lupus Foundation of America

Resource Content

What is the topic?

People with lupus experience symptoms that affect family relationships, an important contributor to quality of life. The extent of the social consequences of lupus on family dynamics, as well as their effects on patients' disease outcomes and psychological well-being, are not fully understood. This may be due to a lack of instruments designed specifically to measure the effects of lupus on family relationships.

What did the researchers hope to learn?

The researchers hoped to learn about the impacts of lupus on family role functioning (i.e., the ability to fulfill key social roles such as spouse, parent, and worker) by use of their newly devised instrument, called the SLE-FAMILY, which includes measurement of six themes or domains of social life with 16 individual items.

Who was studied?

A total of 112 people with lupus participated in different parts of the study, which included the following phases: interviews (n=20), pilot study (n=25), validation (n=52), and follow-up pilot study (n=15). All patients were recruited to the study from the Rheumatology Clinic of the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School.

How was the study conducted?

For inclusion in the study, lupus patients must have been 20-65 years old and fluent in English.

Phase one of the study included a review of the literature, patient interviews, and selection of domains (or topic areas) to be explored in the SLE-FAMILY, as well as development of specific items to address them. During phase two, a pilot test was conducted to assess readability and comprehension of, as well as performance on, potential items for the SLE-FAMILY. Phase three consisted of a study to validate the SLE-FAMILY and determine its degree of test-retest reliability (i.e., to assess similarity of overall score when the test was given multiple times). After validation, a follow-up pilot study was performed using a modified version of the SLE-FAMILY. Items on the SLE-FAMILY were designed to have content understandable at an eighth grade reading level according to Flesch-Kincaid Grade Level readability tests.

Responses to the SLE-FAMILY were registered on a 7-point Likert scale, with higher scores indicating worse family functioning. Performance on the SLE-FAMILY was compared to that on other validated measures, which were specific for lupus or also applicable to other patient groups.

What did the researchers find?

When considering all the patients included in the different phases of the study, they were mostly women (at least 88% in each study phase) with an average age of 37-39 years, who had lupus for an average of 8-10 years. The lupus patients included were variable in disease activity, marital status, and race.

Phase one results indicated that the meaning of “family” varied, with 95% of patients listing immediate family members as their family, but with 70% also including extended family, friends, and/or pets. About 60% of the patients indicated that their lives were out of balance due to lupus and that work and other obligations often had to come before family. In addition, about 80% of patients reported that lupus negatively impacted their ability to function properly in various family roles (such as mother/father, husband/wife, and “breadwinner”).

The six domains of the SLE-FAMILY included measures related to the following: a) fatigue; b) family activity participation; c) mental health; d) isolation vs. social support; e) intimacy vs. love; f) and role functioning.

In phase one, about 90% of patients indicated that fatigue was a problem for them, and 65% indicated that fatigue was their most bothersome symptom. In terms of family activity participation, 55% of patients indicated that lupus flares were unpredictable, although most said they learned how to cope with them. Also, participation in “active” activities were reportedly greatly affected by lupus. In terms of mental health, 88% reported that poor mental health impaired their ability to participate in activities they found enjoyable and also that the mental health and well-being of their entire family was affected by lupus. In terms of isolation vs. social support, withdrawal tended to occur during times of lupus flares, during which times patients retreated to bed and felt excluded from valued activities by loved ones. In terms of intimacy vs. love, 84% of the sexually active patients reported that lupus had a negative impact on their ability to have a gratifying sex life. In terms of role functioning, 80% indicated that family roles, especially those of spouse and parent, were negatively impacted by lupus.

Phase two results indicated that, overall, items on the SLE-FAMILY had good internal consistency (i.e., scores for different individual items were consistent with each other) and were significantly correlated with other previously validated quality of life tools. Phase three results indicated that the SLE-FAMILY had good test-retest reliability (i.e., similarity of overall score when the test was given multiple times). The validity (the ability to measure what it intends to measure) of the SLE-FAMILY was shown to be strong when compared to that of other related measures mentioned above.

Interviews of a subset of patients indicated that the instructions for the SLE-FAMILY were understandable and easy to read. Also, about 90% of the items on the SLE-FAMILY were rated 9-10 on a 10-point scale, with 10 indicating an “Excellent” item for the assessment of a particular domain. In addition, every patient expressed that evaluating how lupus affects family role functioning is extremely important.

What were the limitations of the study?

One of the items on the SLE-FAMILY may have been misunderstood by several patients. However, the researchers conducted additional analyses to account for this and the results remain unchanged.

What do the results mean for you?

The SLE-FAMILY is a new and unique instrument useful in measuring health-related quality of life in people with lupus, specifically as related to family role functioning. Further studies will be needed to validate these results in a larger patient population comprised of various ethnic groups.

The assessment of health-related family role functioning in systemic lupus erythematosus: preliminary validation of the SLE-FAMILY
Hassett AL, Li T, Radvanski DC, Savage SV, Buyske S, Schiff SA, and Katz PP.Arthritis Care & Research (Hoboken).
2012 Mar 21.