Nonspecific Symptoms Lead to Lower Quality of Life for Patients, Partners, Study Shows

Nonspecific Symptoms Lead to Lower Quality of Life for Patients, Partners, Study Shows

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.”

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Patrícia holds her PhD in Medical Microbiology and Infectious Diseases from the Leiden University Medical Center in Leiden, The Netherlands. She has studied Applied Biology at Universidade do Minho and was a postdoctoral research fellow at Instituto de Medicina Molecular in Lisbon, Portugal. Her work has been focused on molecular genetic traits of infectious agents such as viruses and parasites.

2 comments

  1. I know it’a important to do actual studies to confirm hypotheses but this result should come as no surprise to anyone. And it has to be the same for any couple or patient/caregiver living with any chronic disease that limits the patient’s ability to live “normally,” which I would define as “without restriction.”

    For patients and partners living with sarc, between the physical and mental symptomatology, the enormous amount of time spent going to and from doctors and other medical appointments, the common chronic fatigue which limits the hours each day that anything can be accomplished or enjoyed, the constant pain and attempts to manage it, etc., it is quite obvious that quality of life is nothing like it is for the healthy population or what is was for those folks pre-sarc. (And that’s not to mention insomnia which also seems typical for sarc patients and completely upends one’s schedule and ability to engage socially and professionally with others.)

    One quick example – my wife and I went from an active lifestyle of biking and swimming and disc golf to her needing to be in bed multiple hours per day, her insomnia keeps her up until at least 2 a.m. most nights until her meds kick in, and then she does not get up until noon at the earliest, she had to retire, I work at home to take care of her, and our social life is mostly limited to going out for movies or dinner when she is up to it. I rarely do anything without her as that’s not only unfair but I also like to help her keep track of her meds so she doesn’t accidentally take too many, especially pain meds, as the disease affects her memory too. And she is not nearly as sick as so many others. Her organs are mostly unaffected. Her disease manifests with chronic fatigue, chronic pain, insomnia, memory deficits, depression and anxiety.

    So the study, I think, confirmed the obvious. Perhaps that will help health care professionals better treat their patients and caregivers, but it is unlikely, especially in the U.S. We don’t have a holistic approach, and if we can’t cure it with a surgeon’s knife or pill, you’re mostly out of luck. What we really need is more research on stem cells, alternative medicine like ozone therapy, cryotherapy, etc., to see if any of those are safe and effective at all, national legalization of medical marijuana, and anything else that is an alternative to steroid therapy which does as much harm as good.

  2. Duffy Grove says:

    I determine each day to enjoy my life. An asthmatic all my life, a Sarcoidosis diagnosis was “more of the same symptoms, only magnified “. This diagnosis was better than the lung cancer that was suspected after a second occurrence of breast cancer and mastectomies.

    So this has been my reality in my 60s & 70s . My reality also includes a wondrous world that I do not have to run to enjoy. Windows with a nice view are precious. Love of family and friends are precious. A sense of humor makes all the difference on a particularly bad day. Bad days are inevitable, so pity parties are occasionally necessary 😥
    I think I was blessed with a positive outlook. I have always loved to laugh. I am encouraged by medical research, and hope that rare diseases get fair efforts.

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