The Impact of the Unknown: Patient Experiences with Uncertainty in Sarcoidosis

Abstract

Background:

Individuals with sarcoidosis face many sources of illness uncertainty, including diagnostic delays, unpredictable therapeutic efficacy and toxicity, and disease-associated morbidity and mortality. Patient perspectives on illness uncertainty in sarcoidosis have not been critically evaluated and offer an opportunity for providers to contextualize and prioritize gaps in care and patient support.

Research question:

How do patients with sarcoidosis describe their lived experiences with the disease and challenges they face in receiving care?

Study design and methods:

We conducted semi-structured qualitative interviews with patients with biopsy-proven pulmonary sarcoidosis receiving treatment for the disease who were seen at a tertiary sarcoidosis center of excellence. Interviews examined patient experiences of living with sarcoidosis including their journey with diagnosis, treatment, and monitoring of disease activity. Transcripts were coded and categorized into themes and subthemes. Saturation was defined as at least 3 interviews without new information.

Results:

Twenty-five participants completed semi-structured interviews. The median age was 60 years, with 64% of the participants being female and 68% identifying as Black. The impact of illness uncertainty was a shared component of their care journeys. Key themes that emerged were 1) the burden of limited disease awareness 2) uncertainty about sarcoidosis management, and 3) the unpredictability of disease progression. Uncertainty emerged as a major challenge that contributed to delays in care, poor disease control, and/or psychological distress.

Interpretation:

Our findings are the first to highlight the impact of patients’ illness uncertainty on sarcoidosis disease outcomes and psychological distress. Individuals living with sarcoidosis may benefit by addressing the psychosocial impact of uncertainty. Individuals living with sarcoidosis may benefit significantly from targeted interventions to mitigate the impact of illness uncertainty.

Sarcoidosis is a poorly understood rare disease affecting over one million individuals worldwide.¹ Delays in diagnosis of sarcoidosis are common, with some individuals seeing up to 14 providers before receiving a diagnosis.^2,3 After diagnosis, the clinical heterogeneity of the disease coupled with sparse high-quality evidence surrounding evaluation and treatment lead to substantial clinical equipoise regarding optimal management strategies. Approximately half of patients with sarcoidosis do not require treatment. Those that do may receive glucocorticoids, disease-modifying antirheumatic drugs, biologic agents, or in certain cases, transplantation. Most medications for sarcoidosis are not approved by the United States Food and Drug Administration (FDA), have varying efficacy, and contribute to physiologic and financial toxicity.

As a result of these clinical difficulties, individuals with sarcoidosis encounter multifaceted challenges. Patients with sarcoidosis are not alone in experiencing the burdens of navigating a rare disease.⁴ In other rare disease states where disease management is clinically underdeveloped or uncertain, qualitative research can improve disease awareness and comprehension among clinicians, identify addressable patient needs, and even help guide possible treatment.^5,6,7

Understanding patient perspectives in sarcoidosis via qualitative methods allows for nuanced appreciation of lived experiences with the disease, contextualization of adverse outcomes, and assessment of patient needs to improve care. We therefore sought to evaluate patients’ experiences with diagnosis, evaluation, and management of sarcoidosis. Additionally, we explored concerns patients had after diagnosis to understand how providers can better support individuals with the disease.

Study Design and Methods:

Study Population

Participants were recruited from a previously established cohort from the Johns Hopkins Sarcoidosis Center (JHSC). The cohort included 128 individuals who were seen at JHSC between August 1, 2018 and February 28, 2019, were ≥ 18 years of age, had a diagnosis of biopsy-proven pulmonary sarcoidosis, and were receiving treatment for sarcoidosis.⁸ In the overall cohort, sociodemographic information was collected by questionnaire. Sarcoidosis organ involvement, comorbidities, medications, and disease duration were also collected. Individuals from the established cohort who had previously consented to be contacted for future studies were contacted by telephone and consented to participate in semi-structured interviews. We aimed to include interviews from at least 25 participants in the study. Purposive sampling was used to recruit patients across the spectrum of health literacy as defined by the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF), with an effort to oversample individuals identified as having low health literacy (less than seventh or eighth grade reading level; defined as a score of < 4). REALM-SF is a 7-item measure assessing health literacy that has been validated in an age, sex, education, and ethnically diverse sample and has good test-rest reliability.⁹ Participants received $50 compensation for their participation. This study was approved by Johns Hopkins Medicine Institutional Review Board.

Study Development and Design

We conducted semi-structured qualitative interviews by telephone with participants to learn more about their lived experiences with sarcoidosis. Interviews, which were recorded and transcribed, were conducted by a research coordinator (TB) and the senior author (MS), both who had no previous interaction with the patients. MS, an expert in sarcoidosis, and ME, an expert in qualitative research, drafted the initial interview guide. The guide was piloted, and questions were modified throughout the interview process using an iterative process. The consolidated criteria for reporting qualitative research was followed.¹⁰ Participants were asked open-ended questions about their diagnosis of sarcoidosis, how sarcoidosis affected daily living, concerns about having sarcoidosis, the impact of sarcoidosis treatments, unanswered questions about sarcoidosis, and suggested education for patients with sarcoidosis. The full interview guide is detailed in e-Appendix 1.

Data Analysis

Three investigators (MS, ME, TB) developed a codebook using an open, inductive process to identify codes from transcripts. Each transcript was independently coded by two coders, (TB and NC) who met with ME and MS regularly to discuss questions. Any threats to reliability and validity were addressed by triangulation among the investigators.¹¹ Coded responses were categorized into themes and subthemes using thematic analyses (NVivo 12.0 software).¹² Any discrepancies between two coders were discussed with senior investigators (ME and MS), with the final coding decided based on group consensus. The independent coding was compared, and a kappa was calculated (κ=0.896 [95% CI 0.900–0.892]). We defined saturation as at least 3 interviews without new information. This definition was informed by prior work showing that saturation can be achieved with fewer interviews in populations with key similarities and in studies with structured interview guides. Our study participants shared key experiences of living with sarcoidosis and receiving treatment for the disease at a tertiary center. Additionally, interviewers adhered to a predefined interview guide.^13,14

Results

Contact was attempted with 37 participants of the eligible individuals enrolled in the parent cohort. Of these, 9 were not able to be reached, 1 was not interested, 2 were too busy or sick, and 25 completed the interview (Figure 1). Demographic and clinical characteristics of participants are described in Table 1. The median age in years was 60 (IQR 9), 64% identified as female, and 68% identified as Black. Four individuals (16%) had low health literacy based on the REALM-SF. The median disease duration in years was 14 (IQR 12). One interview was conducted per participant. The mean interview time was 29.8 minutes with standard deviation of 10.1 minutes. Among the 12 individuals who were contacted but did not participate in the study, the median age in years was 64 (IQR 16), 58% identified as female, and 67% identified as Black. One individual (8%) had low health literacy by REALM-SF. The median disease duration was 6 years (IQR 19.5 years).

Figure 1:

Study Enrollment

Table 1:

Participant Characteristics

	N=25 N(%)
Age in years*	60(9)
Gender, female	16(64)
Race
White	8(32)
Black	17(68)
Education
High School Diploma or less	6(24)
Some College or College Degree	12(48)
Graduate Degree	7(28)
Income
<$50,000	11(46)
$50,000-$124,999	9(38)
>$125,000	4(17)
Medication Regimen
Corticosteroid only	10(40)
Corticosteroid + Steroid Sparing Agent	9(36)
Steroid Sparing Agent Only	6(24)
Prednisone Equivalent Corticosteroid Dose (milligrams)*	12(7)
Organ Involvement
1 organ	6(24)
2–4 organs	17(68)
>/=5 organs	2(8)
Charlson Comorbidity Index*	1(1)
Disease Duration in years*	14(12)
REALM-SF, low health literacy	4(16)

^*Median (Interquartile Range)

REALM-SF: Rapid Estimate of Adult Literacy in Medicine-Short Form

Participants with sarcoidosis reported a range of experiences and challenges related to their disease. The impact of the unknown was a unifying theme among interviews. Key themes that emerged were 1) the burden of limited disease awareness 2) uncertainty about sarcoidosis management, and 3) the unpredictability of disease progression (Tables 2–4). Quotations from interviews are followed by participant demographics.

Table 2:

The Burden of Decreased Disease Awareness

Exemplar Quotes
Delayed Diagnosis
“I just wished I had been diagnosed sooner. I mean, I really wish that somebody had thought of this sooner. And I just wish I would maybe know is it causing everything that I think it’s causing.” (White, F, 58)
“I wish I would have known about the sarcoid clinic earlier, so that I could have got involved with it. Maybe I could have been on the medication, initially, to prevent a lot of things.” (Black, F, 50)
Diagnosis Testing
“Well, each time I went to the ER or urgent care, they saw that my troponin levels were elevated, and they thought I was having a heart attack. So that happened three or four times before they decided to call in a cardiologist and investigate if sarcoid may be in the heart. So when he tested me, they found that it was there “(Black, M, 62)
“It needs to be- GPs should be able to say, “Hey, this person’s got an autoimmune life disorder. They feel like crap. Sarcoidosis doesn’t often give any inflammatory marker flags in blood work,” which was another problem I was having. My inflammatory markers are always rock solid. I’ve been to six rheumatologists. I even had a doctor say to me, “Oh, you didn’t like any of them?” like I’m a problem patient. I was like, “No, they tell me all the time that 30% of people are seronegative. And then as soon as they do my blood work they no longer look at me. I’d be sitting there swollen, in pain, fatigued. They’re staring at my blood work and going, ‘Well, your blood work’s fine.’” (White, F, 55)
Awareness
“Even though there’s pulmonologists out there, there’s not that many that are well versed in sarcoid.” (White, F,65)
“Nobody’s heard- I shouldn’t say nobody’s heard of-- a lot of people haven’t heard of it. The people who’ve heard of it is only because either they, or someone close to them, has it” (White, M, 63)

F: female, M: male

Table 4:

The Unpredictability of Disease Progression

Exemplar Quotes
Concerns of Disease Spreading
“No one knows how it grows or moves in your body.” (White, M, 57)
“Then also, you got to be wary that just because you get diagnosed for one system doesn’t necessarily mean it can’t become systemic.” (Black, M, 56)
“That’s my worst fear is that it doesn’t affect my other organs.” (Black, M, 73)
Concern about Disability
“My concern was how was I going to function? How was I going to take care of my kids? How was I going to take care of my house? (Black, F, 65)
“Could I function normally every day? That’s what I wanted to know.” (White, M, 69)
Concern about Death
“I mean, I just feel, like I said, again, the unknown of not knowing what really to expect or how long, it’s like, am I going to die? But I don’t think I am. But its just the unknown, just worries.” (Black, F, 63)

F: female, M: male

The Burden of Decreased Disease Awareness

Participants emphasized the lack of awareness of sarcoidosis among healthcare providers as a significant factor contributing to delays in appropriate care. Many recounted being misdiagnosed with alternate conditions prior to sarcoidosis diagnosis:

“I went to the emergency room three times. They sent me home the first time and told me I had vertigo. Second time they told me I was suffering from job stress. And the third time, I had passed out at home, and my wife called an ambulance, and they took me back to the ER, and that’s when they found it.” (Black, male (M), 62 years old)

“Because first, they diagnosed me with lupus and come to find out it was not lupus. It was sarcoidosis.” (Black, female (F), 53)

Even after diagnosis, participants noted ongoing challenges finding providers who felt comfortable managing their disease. Both general practitioners and pulmonologists were perceived as having an incomplete understanding of sarcoidosis and its management. This lack of awareness led to decreased recognition of extrapulmonary disease and initiation of appropriate treatment. Relatedly, finding providers with sarcoidosis expertise led to the perception of improved care.

“And I found that most doctors-- my GP was completely ignorant about it. They often think it’s just a lung disease.” (White, F, 55)

“I wish I would have known to have gone to someplace that specializes in sarcoid. I didn’t realize that all pulmonologists didn’t know about it.” (White, F, 65)

“And when you have the right doctors, and when you find out and you get educated with it, then you know more how to handle it.” (Black, F, 53)

Finally, decreased disease awareness not only delayed recognition and treatment of sarcoidosis but was also noted to have adverse health effects. Participants with end-stage organ disease noted the life-altering impacts of decreased disease awareness in their own care journeys:

“I wish I had known the symptoms earlier, because I probably had-- a lot of symptoms I was probably having earlier and I could have probably caught it sooner and probably could have-- like the doctor said, could have probably saved my eye.” (Black, M, 52)

“If I’d have found out earlier, I might not have had the irregular heartbeat” (White, M, 57)

Uncertainty about Sarcoidosis Management

Participants highlighted multiple uncertainties surrounding sarcoidosis management. Regarding treatment, participants expressed mixed sentiments about efficacy of sarcoidosis medications. While some described immunosuppressive therapies as alleviating disease activity, others reported a lack of benefit from sarcoidosis medications.

“Like right now they have me on Prednisone. So I take them like I’m supposed to take them. So they’ve been helping, because I used to couldn’t-- I was coughing a lot and it stopped me from coughing a lot.” (Black, M, 52)

“But now, because it’s attacking other organs, the medication doesn’t work, so there’s not a whole lot they can really do.” (Black, F, 61)

This heterogeneity of treatment responses was attributed to a lack of standardized treatment regimens and few sarcoidosis medications being approved by the United States FDA.

“It was really stressful when you first don’t know what therapy’s going to work for you. That’s the most stressful time is when you’re trying to figure it out. Because you’re getting these headaches and all this other stuff that doesn’t work.”(Black, M, 56)

“And again, from what I understand, there are no FDA-approved treatments specifically for sarcoidosis. They just kind of treat you based on what organs it’s attacking, or what your symptoms are. And again, the treatments, for me, is just hit or miss and I just don’t have a lot of options.” (White, F, 55)

Participants additionally expressed difficulties in distinguishing disease activity from side effects of medications for sarcoidosis. This led to concerns about whether the benefits of disease control outweighed the burden of medication toxicities.

“It’s hard to know what’s the symptoms of the actual disease and what are the side effects of the medicines because a lot of times the medicines cause some of the same kinds of things that the disease does, so it’s hard for me to know.” (White, F, 65)

“The side effects concern me about the prednisone. I think the side effects is worse than the disease itself.” (Black, F, 65)

Finally, participants expressed uncertainty about the long-ranging impacts of the medications and diagnostics used to treat and monitor their disease. While the short-term potential benefits of sarcoidosis medications were acknowledged, there was also widespread concern about whether they would have long-term harms that did not justify their initial use. Similarly, participants expressed apprehension regarding the cumulative radiation from imaging used in disease monitoring.

“I will be having more and more questions in terms of long-term medications. How is this going to impact me in the long-term? What kinds of things is this going to cause me down the road that, yeah, maybe it’s helping me right now, but is it going to cause problems down the road for me? They’re the kinds of questions that are more upsetting than anything.” (Black, F, 63) “Well, I just know that radiation isn’t good and wondering if I’m getting too much on my lungs.” (White, F, 58)

The Unpredictability of Disease Progression

Participants noted extensive uncertainty and anxiety about their own disease prognostication. After diagnosis, concerns emerged about the chronicity of the disease and if it would involve other organs.

“I mean, I was just worried about how it was going to affect me in the long run. You could be sick for a short term and get past it, but when it’s lasting for years, and this is going on my second year-- so I was very concerned about how it would affect me down the road.” (Black, F, 61)

“Just because you just never know what part of your body it’s going to attack next. The most common part is the lungs; then there’s eyes; then there’s your heart, which, unfortunately, is the most dangerous. And of course, I have that one.” (Black, F, 50)

Concerns about the impact of disease activity on quality of life and disability were also noted.

“By it being my brain, my concern was how was I going to function? How was I going to take care of my kids? How was I going to take care of my house, everything after that?” (Black, F, 65) “In the back of your mind, you would think sometime, ‘How long can you live with this disease? And at some point, what will I be able to just still do for myself, or will I become totally dependent on somebody else helping me?’” (Black, M, 62)

Finally, participants expressed concerns about mortality associated with the disease and emphasized that the risk of death from the disease was an unknown to them.

“Am I going to die? But I don’t think I am. But it’s just the unknown, just worries.” (Black, F, 37)

Discussion

In our qualitative study of 25 patients with sarcoidosis seen at a tertiary center, we found that uncertainty and its effects on quality of care and psychological well-being characterized much of patients’ lived experience with the disease. Participants described that uncertainty manifested in decreased awareness about sarcoidosis, ambiguity in disease management, and unpredictability in disease progression, all of which increased the burdens of living with sarcoidosis and shaped the challenges patients navigated. Taken together, our findings highlight the immense amount of progress that is needed in the field–not only to understand disease pathogenesis and prognostication, but also to expand disease awareness and support individuals navigating the psychosocial impact of the uncertainty in their care journeys.

Qualitative research in sarcoidosis has been limited, perhaps owing to the fragmented nature of care for many individuals living with the disease.² Only one previous qualitative study in individuals with the disease has been published. Harper et al. created five focus groups to examine barriers to care and methods of self-empowerment among individuals with sarcoidosis residing in high and low median-income zip-code areas.¹⁵ They found that irrespective of income, individuals with sarcoidosis experienced many similar obstacles surrounding diagnosis and treatment. These included traumatic diagnoses, organ-related symptoms, generalized fatigue and depression, high cost of care, treatment toxicities, and poor communication with providers. Our work shares themes with this study, as participants noted the impact of disease activity and challenges that come with treatment in the disease. The theme of uncertainty in patients’ care journey that emerged in our study is an important addition because opportunities to address uncertainty, including improving disease awareness, may ameliorate the multiple burdens described above.

Despite its discovery over 140 years ago, sarcoidosis remains an elusive disease. Uncertainty and clinical equipoise persist at every stage of the disease, from diagnosis to treatment. Although there are guidelines for diagnosis and treatment of sarcoidosis, they rely heavily on expert consensus, and recommendations are largely supported by low-quality evidence.^16,17 Our results highlight that patients acutely feel the psychological burden of uncertainty throughout their care journeys. These findings inspire multiple avenues for further action. On an individual level, supporting patients through the challenges of uncertainty in their disease courses can help to alleviate its psychosocial burden.¹⁸ Multidisciplinary care can also bridge gaps in disease understanding. Receiving care from subspecialty sarcoidosis experts who can discuss challenging cases and coordinate plans of care may help mitigate uncertainty about management of multiorgan and/or complex disease.⁴

Beyond optimizing interactions among patients and providers, the field must focus on outreach and education to increase disease awareness. These types of initiatives–aimed at both patients and providers–have shown promise in other chronic diseases such as Sickle Cell Disease, for which numerous national and international educational efforts have engaged patients and providers and increased understanding of the disease.^19,20 In sarcoidosis, increasing disease awareness may lead to faster diagnoses, development of patient support networks, and ultimately increased research funding. More work is needed to understand how best to implement education and outreach to providers in the community.

Participants in our study discussed the impact of uncertainty regarding sarcoidosis management, highlighting the difficulty of balancing of treatment efficacy with toxicity and concerns about long-term harms from sarcoidosis management. Few treatment options exist in sarcoidosis and glucocorticoids remain the first-line therapy in the disease.¹⁷ Glucocorticoids are cost-effective with established efficacy across multiorgan disease.²¹ Despite these advantages, glucocorticoids confer multiple harms to individuals with sarcoidosis, including metabolic syndrome, increased healthcare utilization, and possibly decreased health-related quality of life .^22,23,24 Clarifying determinants of glucocorticoid toxicity may help mitigate patient uncertainty about treatment toxicity in the disease. In multiple inflammatory diseases, the glucocorticoid toxicity index (GTI) is a clinical tool that has been used to measure change in glucocorticoid toxicity between two timepoints.²⁵ The GTI, or a similar measure, could be utilized by sarcoidosis providers to help measure and reduce glucocorticoid toxicity in clinical practice, thereby empowering patients to better assess the benefits of therapy against the risks of treatment toxicities.

Finally, at the core of interventions to reduce the unknown in sarcoidosis must lie ongoing efforts to elucidate the cause of the disease, clarify clinical phenotypes, and expand treatment options for multiorgan disease manifestations. To address patients’ experience of uncertainty in disease progression, providers should expand outcomes used to monitor disease activity beyond clinical gestalt, radiographic imaging, pulmonary function tests, and/or laboratory studies. These outcomes may not be of high priority to patients with sarcoidosis, who have previously expressed quality of life and functionality as the most important disease outcomes.²⁶ Patient-centered measures of disease activity that address health-related quality of life have been successfully deployed clinically and in research in multiple chronic disease states such as rheumatoid arthritis.²⁷ These measures are gaining recognition in sarcoidosis and have recently been used in clinical trials of novel therapeutics; however, standardization and widespread adoption of these measures remain aspirational for the field.^28,29 Incorporating patient reported outcomes into clinical and research efforts in sarcoidosis can lead to a better understanding of the impacts of disease activity and treatment on daily living, thereby potentially reducing the burden of uncertainty for individuals with the disease.

Our work has several limitations. Our study explores the experiences of 25 patients seen at a tertiary academic center and may not be representative of other patients’ experiences. While purposive sampling was used to recruit patients across the spectrum of health literacy, individuals with low health literacy represented 16% of our study population and require further study. Interviews were conducted from 2018 to 2019; however, we believe the sentiments expressed by patients are still relevant today, as awareness of the disease remains low and there has not been substantial progress in understanding disease pathogenesis or treatment. Finally, the cohort from which we recruited participants comprised of individuals receiving treatment for sarcoidosis. Up to half of individuals with sarcoidosis do not require treatment and may face unique challenges.³⁰ Despite these limitations, our study comprised a sociodemographically and clinically diverse patient population, with many of our findings supported by the limited other qualitative work in the field.

Interpretation

Overall, sarcoidosis research should continue its focus on elucidating the mechanisms underlying disease pathogenesis and activity, ideally with multicenter cohorts that capture the clinical heterogeneity of disease. While this is underway, clinicians may be able to partially offset the burden of disease by supporting individuals as they confront uncertainty in their care journey. This empathy, when combined with outreach and education efforts, may help patients better grapple with the unknowns of the disease.

Table 3:

Uncertainty about Sarcoidosis Management

Exemplar Quotes
Concerns about Medications
“The medication bothers me more than the disease, but if I didn’t take the medication I’d probably be dead.” (White, F, 72)
“That’s probably the most upsetting thing is, what’s going to happen to me in the future and what about these medications? What are they doing to my body that I’m going to pay for down the road?” (White, F, 65)
“Yeah I do. I mean, and I guess it’s a double-edged sword because of the medicine-- the Prednisone-- how long I’ll have to be on it. I’ve trying to go off the Prednisone and the cough came back so I had to go back on to the Prednisone again. I’m worried about that because I don’t want cause problems with my bone density.” (White, M, 53)
Medication side effects
“I just wonder if it’s going to get worse than better because this medication that I’m on – you would think as long as I’ve been on it – which I really switched up to – it’s been three different medications since I’ve been diagnosed. Most of the medication makes me weaker than without the medication, but at the same time, it helps me to cough up a lot of the phlegm that seems to be heave on my chest, so I continue to take it.” (Black, F, 61)
Medication Not Helpful
“And they’ve given me a new medication, methotrexate, to go along with the prednisone steroids, and it’s kind of slow reacting.” (Black, M, 62)

F: female, M: male

Take-Home Points Pullout:

Study Question:

We sought to better understand patient experiences in sarcoidosis to identify gaps in care.

Results:

Patients with sarcoidosis identified uncertainty as a major challenge that contributed to delays in care, poor disease control, and/or psychological distress.

Interpretation:

Our findings are the first to highlight the impact of uncertainty on patients with sarcoidosis and explore targeted interventions that may reduce its burden in patient care journeys.

Abbreviations list:

FDA

Food and Drug Administration

REALM-SF

Rapid Estimate of Adult Literacy in Medicine-Short Form

M

Male

F

Female

IQR

Interquartile Range

e-Appendix 1: Patient Participant Semi-Structured Interview Guide

As we discussed during the informed consent, the goal of this study is to talk to people with sarcoidosis and learn more about common questions and concerns patients have about sarcoidosis. There are no right or wrong answers. Is it okay if I press play on the recorder, and I will be recording the rest of our discussion? Please stop me if you have questions or if you wish to stop recording for any reason.

Theme: Impact on life

1. When were you diagnosed with sarcoidosis?

2. Everyone is affected by sarcoidosis differently; what symptoms do you have with sarcoidosis?

3. How would you describe to someone else what it is like to live with sarcoidosis?

4. Tell me about your daily life and how sarcoidosis has changed it.

   1. Probe if not discussed: What has changed?
   2. Probe if not discussed: Are there things that you used to be able to do, but can’t or want to do, but can’t?
5. What concerns do you have about having sarcoidosis?

   1. Probe if not discussed: What, if any, concerns do you have about your future living with sarcoidosis?

6. What if any impact has sarcoidosis had on your relationships with your friends and family?

7. What if any impact does sarcoidosis have on your mood?

8. How do you manage the impact sarcoidosis has had on your life?

9. How if at all, has taking medicine for sarcoidosis impacted your life?

One of the purposes of this interview is to help us create better education for patients with sarcoidosis. We are going to switch to talk about how education in sarcoidosis.

Theme: Education about sarcoidosis

1. If you were talking to someone else diagnosed with sarcoidosis, what would you tell them about it?

2. A lot of people have questions, when you were diagnosed with sarcoidosis, what questions did you have?

   1. Probe if not discussed: how did you find answers to those questions?
   2. Probe if not discussed: If googled, how did you decide that was a good website to trust
   3. Probe if not discussed: If you use something regularly, what brings you back to it?
   4. Probe if not discussed: What questions have you not been able to find an answer to?

3. How can we increase awareness for sarcoidosis?

4. What information do you wish you had known to help you take care of yourself after being diagnosed sarcoidosis?

5. Have you talked to anyone else with sarcoidosis? What did you ask?

6. What information should be included in education for sarcoidosis patients.

   1. Probe if not discussed: what topics do you want to know more about? Diagnosis, symptoms, treatment, prognosis, follow up.

7. What do you think is the best way to deliver information about sarcoidosis to patients?

This is the end of our interview. Thank you for talking to me. If you would like to continue talking to someone about your sarcoidosis you can contact the Foundation of Sarcoidosis Research or your doctor’s office for information on other sarcoidosis groups near you.