Sarcoidosis patients and their partners experience a lower quality of life because of nonspecific disease-associated symptoms compared to healthy people, a new study demonstrated.
The study, titled “Quality of Life of Couples Living with Sarcoidosis,” was published in the journal Respiration.
Sarcoidosis is an inflammatory disease affecting multiple organs. In addition to organ-related symptoms, patients report more generalized symptoms including physical impairments, fatigue, cognitive failure, and symptoms related to small fiber neuropathy (SFN) such as “pins and needles,” pricks, tingling, and numbness.
These additional symptoms can negatively affect the social and professional lives of patients, leading to stress, anxiety, and depression.
Having sarcoidosis can significantly and negatively affect patients’ quality of life (QoL), a self-evaluation of a patient’s physical, psychological, and social functioning. In many sarcoidosis patients, QoL is considered the most important outcome of treatment.
Studies have shown the biggest factors that negatively affect QoL in sarcoidosis patients are fatigue, depressive symptoms, reduced exercise ability, difficulty breathing, and joint pain. All of these lead to anxiety, psychological stress, and reduced well-being, not only of patients but also their partners. However, studies evaluating the impact of these nonspecific symptoms on partners of sarcoidosis patients is limited.
To understand how these symptoms affect patients and their partners, researchers in The Netherlands followed sarcoidosis patients who had been evaluated and/or treated at the ILD Center of the department of pulmonology of Maastricht University Medical Center. The team recruited 433 sarcoidosis patients; 208 of them had partners.
Sarcoidosis patients completed these questionnaires: World Health Organization QoL-BREF (WHOQoL- BREF), Fatigue Assessment Scale (FAS), SFN Screening List (SFNSL), cognitive failure questionnaire (CFQ), state and trait anxiety inventory (STAI), Center for Epidemiological Studies Depression Scale (CES-D), and Perceived Social Support Scale (PSSS). Patient partners completed the WHOQoL-BREF, FAS, and CFQ questionnaires.
Researchers also collected information on patients and partners, such as gender, age, time since diagnosis, and patient treatment. Healthy controls (62 individuals) were recruited in the same geographical area and time frame as the study.
Following a statistical analysis of the scores from the WHOQoL-BREF questionnaire, the overall QoL measure of sarcoidosis patients was significantly lower than in healthy controls — 6.0 in patients versus 8.7 in controls. The lower this score, the lower the person’s quality of life. This was true for all physical, psychological, social, and environment questionnaire subsections (domains).
FAS (fatigue) scores were significantly higher in patients (score of 30.1) than in controls (15.6), as was the CFQ total score (cognitive failure) — 43.0 in patients compared to 31.3 in healthy individuals, indicating that sarcoidosis patients have increased fatigue and cognitive failure compared to controls.
Partners of sarcoidosis patients also had a reduced overall QoL score (8.2), although not as low as patients. Consistently, FAS scores (17.5) and CFQ scores (24.9) were higher in partners, but not as high as in patients.
Interestingly, none of these nonspecific symptoms in patients, or even their overall QoL scores, were associated with the QoL scores of partners. However, researchers did identify a lower QoL in partners in the psychological and social domains.
All of these non-specific symptoms, except perceived social support, had a negative impact on various aspects of the QoL of the sarcoidosis patients. This underlines the importance of determining all non-specific symptoms in sarcoidosis patients.
In patients, fatigue and depression primarily influenced overall QoL scores.
Looking at each domain, fatigue, SFN-associated symptoms, depression, and cognitive failure affected physical health QoL. Regarding psychological health QoL, fatigue, anxiety, and depressive symptoms affected this parameter negatively, while perceived social support had a positive association with psychological health QoL.
The QoL of social relationships was negatively affected by anxiety, while perceived social support was positively associated. SFN-associated symptoms and depression were negatively associated with environment QoL.
Taken together, the results show that couples living with sarcoidosis have an overall lower QoL compared to healthy people.
“The QoL of partners of sarcoidosis patients was reduced, although to a lesser extent than that of the patients. Although the nonspecific symptoms and perceived social support were related to the patients’ QoL, this was not the case for the partners,” the researchers said.
Overall, the team suggested that “in the management of sarcoidosis, it is important to focus not only on the patients but also on their partners,” and emphasized that “further studies are needed to investigate whether offering psychosocial support at the outpatient clinic for sarcoidosis patients, as well as their partners, would lead to better coping strategies and improve QoL for both of them.”