Background/Purpose: Systemic Sclerosis (SS) involves multiple systems that affect the ability to move and function. When ability is lost the individuals living with this autoimmune disorder may experience changes in day-to-day abilities. If a decline in function occurs then independence and quality of life changes; therefore an assessment of function and quality of life in persons with SS was done.

Methods: Thirty individuals (22 African-American, 6 Caucasians, 2 other) with SS were given a health literacy test before administering self-report tests on quality of life; these included the Health Assessment Questionnaire Disability Index (HAQDI), ADLs, IADLs and the St. George Respiratory Questionnaire. Additionally medical records showed the 6 Minute Walk Test had been performed on 15 of the individuals. Health literacy was assessed prior to giving the paper and pencil reports using the Rapid Estimate of Adult Literacy in Medicine (REALM).

Results: The average age was 62.5 (range 55-82). Individuals reported impairment as follows: 33% with the HAQDI, 11% ADLs, 10% IADLs. The REALM score ranked an average of 7-8th grade level. The average duration of SS diagnosis was 9.4 years. Seventeen of the participants (15 African American, 1 male) had 6-M-W scores, walking an average of 334 meters (m) with a dyspnea level of 2.5 (out of 10); 6 out of 13 had Pulmonary Function Test of Forced Vital Capacity < 80%. Only 1 individual walked the normal distance for their age group a 76 year old woman walked 820 m (normal 471 m).

Conclusion: Most individuals scored a high ability with low impairment on ADLs and IADS, with average HAQDI score of 0.98 (out of 3.0). This indicates a low impact of the disease on daily function; however more than half of the participants reported difficulty with stair climbing, meaning individuals may struggle with more challenging movements. Individuals with SS perceived they were able to perform independently at relatively high levels, 66%-90% of function on the disability and self-care reports but when it came to actual performance these individuals were not able to walk at normal age-ranked levels when walking for 6 minutes. Perhaps these individuals adjusted to lower levels of function over time and did not see themselves as having much disability. A low number of respiratory symptoms were reported on the St. George Respiratory Questionnaire yet only one individual was able to walk the norm for her age group. Another possibility is that individuals could have had difficulty understanding the self-report tests, even when assistance and explanation was offered resulting in higher scores on those tests. The health literacy scores did score at a 7-8^th grade level. It is vital that health care professionals understand that individuals who are living with SS may not always accurately report their ability to function; therefore it behooves the professional to have their patient perform the skill in question so that more accurate information can be obtained and optimal intervention can be sought. Villalba WO, Sampaio-Barros PD, Pereira MC, Cerqueira EMFP, Leme Jr CA, Marques-Neto JF, Paschoal IA. Six-Minute Walk Test for the Evaluation of Pulmonary Disease Severity in Scleroderma Patients CHEST. 2007;131:217–222.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/self-perception-reporting-to-healthcare-professionals-do-individuals-with-systemic-sclerosis-report-quality-of-life-changes-accurately/