Abstract
Introduction
Granulomatous mastitis (GM) is a rare, benign disease characterized by painful inflammation, and abscesses typically on only one breast. Treatments include antibiotics, steroid treatments, and surgery, but there is no cure. The current study was designed to assess patient perceptions of living with the disease and what they would like physicians to know about their needs.
Methods
The advent of the internet has enabled patients with rare conditions to reach out to support each other. Participants on a GM patient only Facebook site were asked if they would be willing to complete an anonymous survey regarding their experiences living with the disease. They completed a demographic survey, as well as measures of their pain and discomfort, psychological state, and social support.
Results
The results indicated that patients with GM believe they need more help managing their pain discomfort and fatigue. They also report significant levels of depression and anxiety suggesting that they could also benefit from more psychological support.
Discussion
Living with this painful, disfiguring disease for which there is no cure has a negative impact on people’s mental and physical well-being. Practitioners who treat people with GM should consider providing their patients with specific pain management options, strategies for coping with fatigue and referrals to mental health practitioners who specialize in coping with chronic disease. Such efforts would help improve patient’s quality of life and ability to cope with this “benign” but life altering disease.
Keywords: Granulomatous mastitis, Fatigue, Pain, Coping
Introduction
Granulomatous mastitis (GM) is a rare inflammatory disease of the breast with an incidence rate of 0.37% in the USA [1]. Although it is extremely rare, GM can occur in males. Considered a benign condition, it typically occurs in women of childbearing age and causes erythema, pain, edema, and sinus tract formation in one breast. Because the symptoms are dramatic and can include skin dimpling and nipple retraction, GM is often mistaken for breast cancer or an infectious process [2]. While mammograms, ultrasound, and magnetic resonance imaging can be used to rule out other pathologies, the final diagnosis of GM relies on histopathological results indicating the presence of granulomas and the localized formation of multi-nucleated giant cells, epithelioid histiocytes, and plasma cells [3].
Although the etiology of GM is unknown, proposed causes include trauma, infection such as Corynebacterium, and autoimmune processes [4]. The literature remains limited, but studies suggest that GM commonly occurs within a few years of pregnancy, but not exclusively [2]. Additionally, the causal relationship between lactation history and GM remains unclear. GM is considered a self-resolving disorder; however, it can take months or years for symptoms to resolve, and the condition can reoccur [5]. Receiving a diagnosis may take weeks or months with multiple medical visits and even then, there is no clear treatment course. Options include the use of oral medication including cortisone, antibiotics, methotrexate, cortisone shots, and surgery, but there is no clear agreement on the efficacy of any of these treatment options [6, 7].
Because it is a disorder of the breast, GM is also associated with a number of physical and psychological challenges. The painfulness of the condition often interferes with activities such as lifting a child, breast feeding, and sexual activity [8] and can influence the decision to have further children. As with many conditions related to reproductive or sexual health, people may be reluctant to disclose the condition to friends, colleagues, or potential dating partners [9]. Finally, GM can also have a negative impact on body image since it can cause scarring, changes in the appearance of the breast, and even the need for a mastectomy [10].
As with many rare diseases, relatively little medical research has been done on GM. Even fewer studies have been conducted looking at the psychosocial aspects of GM. It is known that patients living with rare diseases experience unique psychological, medical, and social challenges when compared to patients with more common disorders [11]. Consequently, these patients experience higher rates of anxiety, stress, and depression than the general population [12, 13]. In comparison to patients with cancer, people with rare diseases report a significantly higher rate of unmet care and support needs [14]. This is problematic since chronic health conditions in general are associated with an increased risk of depression [15]. Likewise, pain is a strong predictor of depression [16], and the two conditions likely have a reciprocal relationship [17]. Fortunately, there is clear evidence that psychological management of pain in chronic health conditions can improve both physical and mental well-being [18].
An extensive body of research suggests that social support is significantly related to physical health [19]. It is also a key factor in mental health [20]. Given the uncertainty associated with GM, it is reasonable to assume that social support could be a contributing factor in the way people respond to having GM. However, social support is not a unitary entity. To be effective, the support offered must be consistent with the needs of the recipient [21]. The Provisions of Social Support Scale [22] suggests that the key components of social support include the opportunity for intimacy, reliable alliance, or having someone who has your back, reassurance of worth, social integration or feeling you belong within your social group, the provision of guidance when needed, and the opportunity to nurture others. Others have found significant relationships between these six aspects of social support and psychological well-being among a sample of patients with multiple sclerosis [23]. While social support has also been shown to play a role in helping people cope with rare diseases, GM was not one of those assessed [24].
Because of the lack of information available on coping with GM, patient’s often find themselves serving as their own advocates. Many providers are unfamiliar with the condition, and there are no established medical centers specializing in this disorder. Consequently, patients often turn to the internet for information and like people with other rare conditions, gravitate toward disease-specific communities for advice and support [25].
For example, a Facebook site open only to people diagnosed with GM has emerged as a leading forum for individuals seeking information about how to get appropriate care and manage their symptoms. With a membership of over 1,000 people, the site draws GM patients from all over the world. In addition to providing practical solutions for where to find comfortable bras, how to manage pain, and how to cope with draining abscesses, the site offers patients a place to express and receive support for their GM-related emotional concerns. This study was designed to explore their views regarding the stress of living with this disease, the problems it creates in their lives, and the types of support they believe would help them to cope effectively.
Methods
The study was posted on the Granulomatous Mastitis Facebook page in the Fall of 2022. Group membership depends on having a diagnosis of GM. The site serves as an informal venue for patients around the world to ask questions, share information, and exchange suggestions on coping with the disorder. However, this means that individual use of the site varies as members’ symptoms change and their needs vary. For the current study, 76 participants started the survey but only 42 completed it. Some logged on and did not complete any of the questions, while others answered a few before discontinuing. We attribute this to a number of factors including possible language challenges, the length of the survey, and the perceived similarity of some of the questions. Nevertheless, the sample size is commensurate with other studies of GM due to the low prevalence of the disease and the paucity of research on the topic. Additionally, comparisons of individuals who completed the survey and those who did not revealed no significant statistical differences in age, total levels of GM-related distress, or GM interference with function. This study was reviewed and approved by the Institutional Review Board of the University of Texas at San Antonio.
All survey data were collected anonymously via Qualtrics, a commonly used online survey tool. The participants ranged in age from 22 to 54 years old. Of the participants who indicated their country of origin, 2 were from Canada, 1 from Finland, 1 from Germany, 2 from India, 1 from Mexico, 1 from the Republic of Ireland, 4 from the United Kingdom, and 17 from the USA.
Measures
Participants were asked to complete a basic demographic survey and a series of questions about their history and treatment experiences with GM. They also completed the following surveys:
Two separate 25 item scales were created to assess GM-related psychological distress and the degree to which it was interfering with their ability to function in their daily lives. The items were based on GM-related discussions on the Facebook forum and concerns common to other forms of chronic illness. Each item was ranked on a 5-point Likert scale ranging from no distress or interference to major distress or interference. Given the novelty of this topic, these GM specific questions have not yet been validated.
The Depression Anxiety Stress Scale (DASS-21) is an adaptation of the DAAS-42 scale [26]. This 21-item scale consists of 3 subscales which can be used to assess depression, anxiety and stress, separately and in combination, all of which are considered valid measures of psychological distress [27]. Sample questions, answered on a scale from 0 (did not apply to me at all) to 3 (applied to me very much or most of the time) include the following: Depression: I couldn’t seem to experience any positive feeling at all; Anxiety: I was aware of dryness of my mouth; Stress: I found myself getting agitated. In this study, the Kronbach’s alpha for stress was 0.856, for anxiety was 0.831, and for depression was 0.895.
Social support was assessed using the Social Provisions Scale [28], a 24-item scale used to measure the participant’s social support system based on reliable alliance, attachment, guidance, nurturance, social integration, and reassurance of worth. Statements like “There are people who admire my talents and abilities” asses the person’s feeling of self-worth obtained from the way other people treat them. The 4-point Likert-type scale ranges from strongly agree (1) to strongly disagree (4) has reported reliability scores of 0.84 to 0.92. The Kronbach’s alpha for the subscales were 0.64 for attachment, 0.756 for social integration, 0.663 for reliance of worth, 0.835 for reliable alliance, 0.770 for nurture, and 0.812 for guidance.
Results
As shown in Tables 1 and 2, scales from the GM Distress Scale and GM Functional Interference Scale that were developed for this study were ranked to show topics in order from most distressing or interfering to least. Rankings of the individual mean scores for each item on the Granulomatous Mastitis Distress scale indicated that breast pain, uncertainty about the progress of the disease, and fear of cancer were the most distressing items. Rankings of the individual mean scores regarding the functional issues caused by GM indicated that pain, fatigue, and abscesses were the top three biggest concerns.
Table 1.
GM-related distress descriptive statistics and ranking
| Distress scale | Mean (standard deviation) | Rank |
|---|---|---|
| Breast pain | 4.64 (0.58) | 1 |
| Progress uncertainty | 4.45 (1.19) | 2 |
| Fear of cancer | 4.3 (1.07) | 3 |
| Treatment uncertainty | 4.26 (0.91) | 4 |
| Advocacy | 4.17 (1.01) | 5 |
| Cause uncertainty | 4.17 (1.03) | 5 |
| Biopsy pain | 4.07 (0.96) | 6 |
| Fatigue | 4.02 (1.11) | 7 |
| Physician | 4.00 (1.19) | 8 |
| Unfamiliarity | 3.95 (1.29) | 9 |
Table 2.
GM-related functional interference descriptive statistics and ranking
| Functional interference scale | Mean (standard deviation) | Rank |
|---|---|---|
| Breast pain | 4.10 (0.88) | 1 |
| Fatigue | 4.02 (1.28) | 2 |
| Abscess | 3.86 (1.33) | 3 |
| Progress uncertainty | 3.83 (1.08) | 4 |
| Treatment uncertainty | 3.77 (1.06) | 5 |
| Advocacy | 3.56 (1.23) | 6 |
| Prognosis uncertainty | 3.50 (1.56) | 7 |
| Cause uncertainty | 3.50 (1.26) | 7 |
| Trouble sleeping | 3.39 (1.20) | 8 |
| Unfamiliar disorder | 3.39 (1.38) | 9 |
Scores on the stress scale of the DAAS ranged from 9 to 27 with a mean of 15.79, which falls within the mild range. Scores on the anxiety scale ranged from 7 to 26 with a mean of 13.17, which falls in the moderate range. Ratings of depression ranged from 7 to 16 with a mean of 13.53, which falls in the mild range. While on average participants were not experiencing significant depression, 13 women did report levels of depression that met the criteria for moderate or severe depression.
Results of the GM Distress Scale, GM Functional Interference Scale, and DAAS were correlated to determine how strongly stress, anxiety, and depression are related to distress and functional impairment in patients due to GM. Correlations between GM distress, GM functional issues and measures of stress, depression, and anxiety revealed several significant interactions. Anxiety and stress were each significantly correlated to both GM distress and GM functional issues. Depression was associated with a GM distress, but not GM-related functional issues (Table 3).
Table 3.
Descriptive statistics and correlations for study variables
| Sample size | Mean | Standard deviation | 1 | 2 | 3 | 4 | 5 | |
|---|---|---|---|---|---|---|---|---|
| 1. Stress | 34 | 9.00 | 4.94 | 0.511** | 0.736** | 0.362* | 0.399* | |
| 2. Anxiety | 34 | 7.00 | 4.89 | 0.575** | 0.468** | 0.567** | ||
| 3. Depression | 34 | 7.00 | 4.80 | 424* | 0.318 | |||
| 4. GM distress | 42 | 56.00 | 13.0 | 0.582** | ||||
| 5. GM interference | 42 | 18.00 | 18.33 |
*Significance <0.05.
**Significance <0.01.
Of the six types of social support measured, only the availability of guidance was significantly related to physical or mental health status. Specifically, perceived guidance from others was significantly related to reduced anxiety (r = −0.348, p = 0.044) but not stress or depression.
To assess the relationship between guidance, GM distress and GM functional interference and mental health three regression analyses were conducted, one with stress, one with anxiety, and one with depression as the dependent variable. Guidance, GM distress, and GM functional interference were used at the independent variables in all three equations.
The equation using guidance, GM distress, and GM functional impairment to predict depression was significant (R2 = 0.484, F(2,31) = 4.732, p < 0.016).
The equation using guidance, GM distress, and GM functional impairment to predict anxiety was significant (R2 = 0.569, F(2,31) = 7.416, p < 0.002).
The equation using guidance, GM distress, and GM functional impairment to predict stress was not significant (R2 = 0.484, F(2,31) = 4.732, p < 0.016).
Limitations
Unfortunately, although 42 participants completed the full survey a similar number did not. Possible explanations for the incomplete surveys include the length of the questionnaire and the fact that many participants from around the world use English as a second or non-primary language. Future attempts to collect data from this group would do well to shorten the survey overall, to simplify the wording of questions, and perhaps to even provide potential participants with a sample question to determine whether they feel they will be able to answer the questions.
Discussion
Although GM is considered a “benign” disease, it has a significant impact on patient’s daily functioning and psychological well-being. Collectively, the women in the study indicated that pain, uncertainty about the course of the disease, and fear that it could be related to cancer were the top three sources of GM related distress. Pain, fatigue, and managing abscesses were cited as the top three factors related to GM related functional impairment.
These findings suggest that GM distress, GM functional impairment, and guidance are related to increased rates of depression and anxiety, though surprisingly they were not related stress. However, poor physical function and GM distress were also related to increased levels of stress and depression. While the women’s average depression score fell in the mild range, a third of the participants reported moderate or severe levels of depression. GM-related distress, GM-related functional impairment, and overall physical function were significantly related to increased levels of anxiety. The overall anxiety scores fell into the moderate range although similar as with depression several participants reported higher levels of anxiety. Clearly, the symptoms associated with GM cause physical and functional distress and as well as psychological concerns.
Of the six aspects of social support, only guidance was related to measures of GM-related distress, functional impairment, depression, and anxiety. The results of this study suggest that patients being treated for GM would benefit from additional guidance in three particular areas: pain management, coping with fatigue, and support in coping with the physical and mental health aspects of this disease.
When treating patients with GM, physicians should assess patients’ pain levels along with their coping strategies for both physically and psychologically since chronic pain is also closely associated with depression [29, 30]. While medication might be appropriate in some cases, many patients would benefit from more explicit information on wound care, strategies for coping with pain if they are nursing a child, and perhaps even consultations with occupational or physical therapy providers who could help them find ways to sleep more comfortably. Additional daily considerations include dealing with seatbelts in cars, performing day-to-day activities, and exercising comfortably. Referrals to pain management treatment centers which already specialize in addressing such needs might be considered for patients dealing with GM-related discomfort [31].
Since fatigue is an often-cited problem with GM and autoimmune disorders in general [32], the impact of fatigue should also be regularly assessed by physicians. Ruling out or treating other causes of tiredness including illness, vitamin deficiencies, and poor sleep habits could help patients cope more effectively with their daily obligations as well as with GM-related pain and uncertainty.
Finally, the results of this study suggest that dealing with a painful, disfiguring disorder of uncertain origin and prognosis takes a psychological toll [33]. Whether this distress is expressed as stress, depression, or anxiety, it can exacerbate concerns about symptoms, impede efforts to recover, and degrade patient well-being and social interactions. To help their patients deal with GM, physicians could explicitly ask about their mental health, offer education about the links between pain, fatigue, psychological distress, and provide patients with information on obtaining mental health support in their community.
Conclusions
Dealing with a disorder of uncertain etiology for which there is no clear treatment protocol is difficult for patients and care providers. While patients may find advocating for themselves stressful, it also provides them with the opportunity to share knowledge and contribute to helping others cope with their disease. Physicians, whose primary obligation is to treat the physical symptoms of the disease, may find that helping patients address issues like pain, fatigue, and psychological distress improves the overall well-being of their patients which is likely to make their jobs easier as well.
Statement of Ethics
This study protocol was reviewed and approved by the Institutional Review Board of the University of Texas at San Antonio Fy-21-22-129. Data were collected online. Participants were provided with a written statement and informed that continuing with the study constituted their consent.
Conflict of Interest Statement
The authors have no conflicts of interest to declare.
Funding Sources
This study was not supported by any sponsor or funder.
Author Contributions
All authors made substantial contributions to the conception or design of the work, the acquisition, analysis and interpretation of the data, drafting or reviewing the manuscript and giving final approval of the version to be published, and agree to be accountable for the integrity of the work.
Funding Statement
This study was not supported by any sponsor or funder.
Data Availability Statement
These data were collected through a Facebook site devoted to individuals who have GM. The corresponding author is a member of the group and obtained all of the necessary approvals from her institution and the site to post the survey. However, she did not obtain consent to make the data set universally available and does not plan to do so given the sensitivity of the topic.
References
- 1. Moris D, Damaskos C, Davakis S, Vailas M, Garmpis N, Spartalis E, et al. Is idiopathic granulomatous mastitis a surgical disease? The jury is still out. Ann Transl Med. 2017;5(15):309. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2. Severs FJ, Guevara L, Sam KQ, Roark A, Benveniste AP, Ebuoma L. Granulomatous mastitis of the breast: a malicious mimic. J Diagn Med Sonography. 2018;34(3):223–8. [Google Scholar]
- 3. Wolfrum A, Kümmel S, Theuerkauf I, Pelz E, Reinisch M. Granulomatous mastitis: a therapeutic and diagnostic challenge. Breast Care. 2018;13(6):413–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4. Altintoprak F, Kivilcim T, Ozkan OV. Aetiology of idiopathic granulomatous mastitis. J Clin Cases. 2014;2(12):852–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5. Mabuchi S, Ohta R, Egawa K, Narai Y, Sano C. Granulomatous mastitis with erythema nodosum during pregnancy: a case report. Cureus. 2022;14(5):e24990. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6. Steuer AB, Stern MJ, Cobos G, Castilla C, Joseph KA, Pomeranz MK, et al. Clinical characteristics and medical management of idiopathic granulomatous mastitis. JAMA Dermatol. 2020;156(4):460–4. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7. Zhou F, Liu L, Liu L, Yu L, Wang F, Xiang Y, et al. Comparison of conservative versus surgical treatment protocols in treating idiopathic granulomatous mastitis: a meta-analysis. Breast Care. 2020;15(4):415–20. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8. Kornfeld HW, Mitchell KB. Management of idiopathic granulomatous mastitis in lactation: case report and review of the literature. Int Breastfeed J. 2021;16(1):23. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9. Krsmanovic A, Dean M. How women suffering from endometriosis disclose about their disorder at work. Health Commun. 2022;37(8):992–1003. [DOI] [PubMed] [Google Scholar]
- 10. Thakur M, Sharma R, Mishra AK, Singh K, Kar SK. Psychological distress and body image disturbances after modified radical mastectomy among breast cancer survivors: a cross-sectional study from a tertiary care centre in North India. Lancet Reg Health Southeast Asia. 2022;7:100077. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11. von der Lippe C, Diesen PS, Feragen KB. Living with a rare disorder: a systematic review of the qualitative literature. Mol Genet Genomic Med. 2017;5(6):758–73. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12. Shire . Rare disease impact report: insights from patients and the medical community. 2013. [Google Scholar]
- 13. Uhlenbusch N, Swaydan J, Höller A, Löwe B, Depping MK. Affective and anxiety disorders in patients with different rare chronic diseases: a systematic review and meta-analysis. Psychol Med. 2021;51(16):2731–41. [DOI] [PubMed] [Google Scholar]
- 14. Depping MK, Uhlenbusch N, von Kodolitsch Y, Klose HFE, Mautner VF, Löwe B. Supportive care needs of patients with rare chronic diseases: multi-method, cross-sectional study. Orphanet J Rare Dis. 2021;16(1):44. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15. Turner J, Kelly B. Emotional dimensions of chronic disease. West J Med. 2000;172(2):124–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 16. IsHak WW, Wen RY, Naghdechi L, Vanle B, Dang J, Knosp M, et al. Pain and depression: a systematic review. Harv Rev Psychiatry. 2018;26(6):352–63. [DOI] [PubMed] [Google Scholar]
- 17. Vadivelu N, Kai AM, Kodumudi G, Babayan K, Fontes M, Burg MM. Pain and psychology-A reciprocal relationship. Ochsner J. 2017;17(2):173–80. [PMC free article] [PubMed] [Google Scholar]
- 18. Williams AC, Eccleston C, Morley S. Psychological therapies for the management of chronic pain (excluding headache) in adults. Cochrane Database Syst Rev. 2012;11(11):CD007407. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 19. Uchino BN. Social support and health: a review of physiological processes potentially underlying links to disease outcomes. J Behav Med. 2006;29(4):377–87. [DOI] [PubMed] [Google Scholar]
- 20. Harandi TF, Taghinasab MM, Nayeri TD. The correlation of social support with mental health: a meta-analysis. Electron Physician. 2017;9(9):5212–22. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21. Cutrona CE. Stress and social support: in search of optimal matching. J Soc Clin Psychol. 1990;9(1):3–14. [Google Scholar]
- 22. Cutrona CE, Russell DW. The provisions of social relationships and adaptation to stress. Adv Personal Relationships. 1987;1:37–67. [Google Scholar]
- 23. Chiu CY, Motl RW, Ditchman N. Validation of the social provisions scale in people with multiple sclerosis. Rehabil Psychol. 2016;61(3):297–307. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24. Bogart KR, Irvin VL. Health-related quality of life among adults with diverse rare disorders. Orphanet J Rare Dis. 2017;12(1):177. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25. Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A, et al. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: a scoping review. Patient. 2017;10(3):283–93. [DOI] [PubMed] [Google Scholar]
- 26. Antony MM, Bieling PJ, Cox BJ, Enns MW, Swinson RP. Psychometric properties of the 42-item and 21-item versions of the Depression Anxiety Stress Scales in clinical groups and a community sample. Psychol Assess. 1998;10(2):176–81. [Google Scholar]
- 27. Henry JD, Crawford JR. The short-form version of the Depression Anxiety Stress Scales (DASS-21): construct validity and normative data in a large non-clinical sample. Br J Clin Psychol. 2005;44(Pt 2):227–39. [DOI] [PubMed] [Google Scholar]
- 28. Cutrona CE, Russell DW. Type of social support and specific stress: toward a theory of optimal matching. In: Sarason BR, Sarason IG, Pierce GR, editors. Social support: an interactional view John Wiley and Sons; 1990. p. 319–66. [Google Scholar]
- 29. Mifflin KA, Kerr BJ. Pain in autoimmune disorders. J Neurosci Res. 2017;95(6):1282–94. [DOI] [PubMed] [Google Scholar]
- 30. Sheng J, Liu S, Wang Y, Cui R, Zhang X. The link between depression and chronic pain: neural mechanisms in the brain. Neural Plast. 2017;2017:9724371. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31. Gauntlett-Gilbert J, Brook P. Living well with chronic pain: the role of pain-management programmes. BJA Educ. 2018;18(1):3–7. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 32. Zielinski MR, Systrom DM, Rose NR. Fatigue, sleep, and autoimmune and related disorders. Front Immunol. 2019;10:1827. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33. Nunn R. “It’s not all in my head!”: the complex relationship between rare diseases and mental health problems. Orphanet J Rare Dis. 2017;12(1):29. [DOI] [PMC free article] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
These data were collected through a Facebook site devoted to individuals who have GM. The corresponding author is a member of the group and obtained all of the necessary approvals from her institution and the site to post the survey. However, she did not obtain consent to make the data set universally available and does not plan to do so given the sensitivity of the topic.