US survey reveals top concerns of over 1,000 sarcoidosis patients
'Fear of poor clinical outcomes,' worsening are greatest issues, per study
People with sarcoidosis who live in the U.S. are most concerned about their disease worsening, developing in more organs, or not lessening, according to the results of an online survey developed by both patients and doctors that was used to query more than 1,000 individuals.
Per the findings, patients expressed relatively less concern about their doctors’ knowledge about sarcoidosis, and were less worried about poor physician communication. Additionally, disease progression was a bigger cause of concern than were the effects of sarcoidosis on life quality, the data showed.
“In this survey of over 1,000 U.S. sarcoidosis patients, their greatest concerns were fear of poor clinical outcomes,” the researchers wrote, adding that “U.S. sarcoidosis patients rank concerns about disease progression higher than disease impact on [health-related quality of life].”
The study, “A Snapshot of United States Sarcoidosis Patients and their Perceived Disease Impact: Results of the Sarcoidosis Research Institute Survey,” was published in Lung. Two independent researchers were involved in the study.
US survey developed by researchers and patients together
In sarcoidosis, small clumps of inflammatory cells called granulomas form in different tissues and organs, impairing their function. The disease can affect any organ, or multiple organs at the same time, causing an array of symptoms that often vary from patient to patient.
“Though … over 50% of sarcoidosis patients have spontaneous disease remission, up to 50% may require treatment at some point for persistent disabling symptoms and [10%]-20% will need long-term therapy for chronic progressive disease,” the researchers wrote.
Finding the right treatment for sarcoidosis can require close collaboration between a patient and a multidisciplinary team of medical professionals.
“The treatment of sarcoidosis requires a patient-centric shared decision-making … approach where the clinician incorporates patients’ perceptions of the impact of disease on quality of life, the potential adverse effects of treatment, and overall well-being into treatment decisions,” the researchers wrote.
While several survey-based studies have assessed sarcoidosis patients’ perspectives about the disease’s impact and the most important treatment outcomes, as well as the concerns of individuals living with the condition, none “evaluated the perceptions, concerns, or perspectives of U.S. sarcoidosis patients,” the researchers wrote.
With that in mind, a team of clinicians in the U.S. worked with patients, using a web-based survey platform, to develop a nationwide, online questionnaire. It asked sarcoidosis patients about their demographics, place of residence, socioeconomic status, education level, organ involvement, treatments, and symptoms.
Respondents were also asked to rank their level of concern regarding 23 issues experienced by sarcoidosis patients, such as clinical outcomes, relationships with doctors, and quality of life.
The survey was conducted between March and November 2023, and shared through social media, networking with sarcoidosis clinicians, and via an advertisement on Sarcoidosis News. A total of 1,018 sarcoidosis patients living in the U.S. completed the survey.
‘A lot’ of fatigue reported by over 40% of respondents in US survey
Most of these respondents (87%) were older than 45, and more than half (65%) were women. Nearly two-thirds of the patients (63%) were white individuals, while 34% self-identified as Black individuals. More than half of the patients (56%) also had a college degree or higher, and about one-third reported a household income of more than $100,000.
Regarding sarcoidosis, 706 participants considered their disease to be active, and 655 reported that they were currently receiving treatment for sarcoidosis.
Most patients (87%) reported lung involvement. Skin was the second most commonly affected body part, as reported by 30% of patients, while multiorgan involvement was noted by 62% of respondents.
Fatigue was the symptom that patients most frequently reported as experiencing “a lot” or “a great deal” (42%). This was followed by depression, emotional distress, or mental health (34%), chronic pain (28%), and shortness of breath (23%).
Nearly 70% of respondents rated the information they received from their doctors about sarcoidosis as very useful or extremely useful. Additionally, one-third reported that information obtained from the internet was very useful or extremely useful.
Clinical outcomes cited as more concerning than life quality issues
Regarding sarcoidosis-related issues, respondents reported the highest level of concern regarding four central themes: fear of progressive or unresolving disease; poor health-related quality of life from sarcoidosis; a lack of sarcoidosis research; and disability from sarcoidosis.
About two-thirds of the respondents reported “moderate” to “a great deal” of concern regarding three key issues. For 70%, this involved fear of worsening disease. For 68%, the concern was developing sarcoidosis in other organs. A total of 65% had this level of concern over no lessening of sarcoidosis.
More than half of patients reported that level of concern regarding poor quality of life from sarcoidosis (58%), the lack of medical research on sarcoidosis (60%), and disability from sarcoidosis (55%).
[U.S. patients] were most concerned about fear of worse clinical outcomes, even more than [health-related quality of life] issues.
Not all quality of life domains “were equally affected,” the researchers noted. Patients ranked “concerns about inability to enjoy everyday activities and free time (physical functioning) much higher than embarrassment, poor relationships, or impaired work performance.”
The lowest-ranked concerns were ineffective communication with doctors, physicians’ lack of knowledge regarding sarcoidosis, and embarrassment from having sarcoidosis. In fact, 60% or more participants rated these concerns as “none at all.”
The researchers expressed surprise that adequate health insurance and the costs of medical care were not identified as a major concern for the surveyed sarcoidosis patients. However, they noted that “this likely reflects the relatively high [socioeconomic status] of this [group of participants].”
Overall, according to the researchers, “our survey found that U.S. sarcoidosis patients have significant concerns about their disease.” Contrary to European sarcoidosis patients, however, those in the U.S. “were most concerned about fear of worse clinical outcomes, even more than [health-related quality of life] issues,” the team wrote.
Further, “most US sarcoidosis patients consider information from their physician to be very useful, suggesting that they are willing to participate in [shared decision-making] if they are provided this opportunity by their caregiver,” the team concluded.
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