Patient Perspectives on the Lived Experience of Acne and Its Treatment Among Adult Women With Acne: A Qualitative Study

Key Points

Question  What is the lived experience of acne among adult women?

Findings  In this qualitative study of 50 adult women with acne, participants described diverse lived experiences, including concerns about appearance, mental and emotional health consequences, and disruption to their personal and professional lives.

Meaning  These findings suggest that ensuring access to care and identifying optimal treatment approaches for women with acne are needed to improve outcomes in this population.

Introduction  Acne often persists into adulthood in women. However, few studies have specifically explored the lived experience of acne in adult populations.

Objective  To examine the lived experience of acne and its treatment among a cohort of adult women.

Design, Setting, and Participants  A qualitative analysis was conducted from free listing and open-ended, semistructured interviews of patients at a large academic health care system (University of Pennsylvania Health System) and a private practice (Dermatologists of Southwest Ohio). Fifty women 18 to 40 years of age with moderate to severe acne participated in interviews conducted between August 30, 2019, and December 31, 2020.

Main Outcomes and Measures  Free-listing data from interviews were used to calculate the Smith S, a measure of saliency for each list item. Semistructured interviews were examined to detect themes about patient perspectives regarding their acne and its treatment.

Results  Fifty participants (mean [SD] age, 28 [5.38] years; 24 [48%] White) described acne-related concerns about their appearance that affected their social, professional, and personal lives, with many altering their behavior because of their acne. Depression, anxiety, and social isolation were commonly reported. Participants described successful treatment as having completely clear skin over time or a manageable number of blemishes. Many participants described frustration with finding a dermatologist with whom they were comfortable and with identifying effective treatments for their acne.

Conclusions and Relevance  The results of this qualitative study suggest that women with acne have strong concerns about appearance and experience mental and emotional health consequences and disruption of their personal and professional lives. In addition, many patients describe challenges finding effective treatments and accessing care. Future trials to understand the optimal treatment approaches for women with acne are needed to improve outcomes in this population.

Acne is responsible for a greater global burden of disease than psoriasis, cellulitis, and melanoma.^1-3 Not only can acne be associated with physical disfigurement, such as permanent scarring, but its emotional impact can lead to social isolation, depression, and suicidality. In fact, treatment of acne is associated with reduced symptoms of depression.^4-6 Given the profound association of acne with quality of life, several qualitative studies^7-11 have sought to understand the lived experience of acne among adolescents. These studies^7-11 have highlighted that acne can have important effects on social and emotional functioning, relationships, school, and work.¹²

However, few studies have specifically explored the lived experience of acne in adult populations, and these studies^13,14 have been limited by small sample sizes. Because acne often persists into adulthood in women, understanding their perspectives on acne and its treatment is important to guide clinical management in this population.¹⁵ The purpose of this study was to examine the lived experience of acne and its treatment among a large cohort of adult women.

Female patients 18 to 40 years of age with moderate to severe acne were recruited from clinics at the University of Pennsylvania Health System and Dermatologists of Southwest Ohio (a private practice in Cincinnati, Ohio). Patients were contacted by telephone and invited to participate in the interviews with the Mixed Methods Research Lab, a research service center at the University of Pennsylvania. Patients who did not speak English or were not reachable by telephone after 2 attempts were excluded. Participants were purposely sampled to recruit a diverse population with respect to age, race, and ethnicity. All patients provided verbal informed consent. This study was approved by institutional review board of the University of Pennsylvania. The study followed the Standards for Reporting Qualitative Research (SRQR) reporting guideline.¹⁶

Voluntary and confidential interviews were conducted by 2 research coordinators (R.N. and M.N.N.) by telephone, lasting a mean (SD) of 28 (8.11) minutes each, between August 30, 2019, and December 31, 2020. Interviews consisted of 2 methods of qualitative data collection: free listing and open-ended, semistructured interviews. During the free-listing phase, participants were asked to describe the first words that came to their mind regarding acne treatments, treatment success, and adverse effects. After the free-listing phase, semistructured interviews were conducted, using an interview guide designed to elicit participants’ perspectives on their experiences with and treatment for acne. Because the Institute of Medicine has prioritized a need for comparative effectiveness research on long-term treatments for acne, we additionally asked participants about their perspectives on participating in a theoretical comparative effectiveness trial to guide the design of a future trial.¹⁷ After the interview, participants were asked several questions about demographic characteristics, including race, ethnicity, age, and annual income, and to provide an overview of their medical and acne history.

Free-listing data were edited by research coordinators (R.N. and M.N.N.) with an established judgment rule to collapse synonymous items, then imported into Anthropac (Analytic Technologies) to calculate the Smith S, a measure of saliency for each list item.¹⁸ The saliency index was calculated using the following formula: S = {[∑(L − Rj + 1)/L]/N}, where L is the length of each list, Rj is the rank of item J in the list, and N is the number of lists in the sample. Saliency describes the words that are most important for defining the domain of interest among members of a group. The salience index can range from 0 (items with low salience) to 1 (items with high salience).

Semistructured interviews were transcribed verbatim by Datagain Transcription Services and sent to the Mixed Methods Research Lab, where they were cleaned of identifying information. Transcripts were then uploaded to NVivo 12 Plus (QSR International), a software package used for qualitative data management. Two research coordinators (R.N. and M.N.N.) systematically reviewed 3 randomly selected transcripts to identify key themes and insights, defined these themes as analytic codes, and created a data dictionary known as a codebook. This codebook was then uploaded to NVivo 12 Plus and applied to each transcript according to the identified categories by 2 research coordinators (R.N. and M.N.N.). Consistency and agreement in the application of the codebook were assessed using the interrater reliability function in NVivo, and any discrepancies were resolved through discussion. This process was iterative, and several versions of the codebook were created until a final version was agreed on. After the codebook was finalized, thematic content analysis was performed to detect themes about patient perspectives regarding their acne and its treatment.

Fifty women with acne (mean [SD] age, 28 [5.38] years; 24 [48%] White) participated in the study (Table 1). Many reported prior treatment with topical retinoids (29 of 37 [78%]), topical antibiotics (16 of 37 [43%]), combined oral contraceptives (16 of 37 [43%]), spironolactone (26 of 37 [70%]), oral antibiotics (23 of 37 [62%]), and isotretinoin (15 of 37 [41%]).

The most salient term with respect to treatment success, as assessed by the Smith S, was clear skin (salience index, 0.67) followed by no scarring (salience index, 0.09) and no acne (salience index, 0.09). The most salient term with respect to treatment adverse effects was dryness (salience index, 0.67) followed by redness (salience index, 0.21) and burning (salience index, 0.14) (Table 2).

When describing ways in which acne had affected their lives, participants consistently noted that their blemishes made them highly aware of their appearance. Participants noted struggling with intrusive thoughts about how they looked or how much attention others were paying to their acne. Concerns about appearance affected patients in their personal and professional lives. Several participants described feeling less confident at work because of their acne. Others shared that their acne made it difficult for them to feel confident while dating because they were worried about their acne and went out of their way to hide it from anyone they dated (Table 3).

Participants often shared that their acne affected their mental health and well-being. Feelings of anxiety, depression, and low self-worth were common as a result of acne breakouts. Many participants stated that the mental health consequences of acne were magnified in adulthood because they had fewer peers with acne and thus felt more isolated. In particular, those who had had acne from a young age expressed feelings of fatigue with managing acne, having expected their acne to resolve in late adolescence.

Participants often noted that family members, friends, and colleagues would make unsolicited suggestions about how they should be managing their acne (eg, “try this product” or “see this physician”). This behavior often made them believe that those around them did not think that they could manage their acne on their own, which contributed to feelings of frustration because many of these individuals were already trying to address their acne.

Mental health and acne were closely tied in the minds of many participants. The idea that acne was only a cosmetic problem and not a significant medical issue was something with which many patients struggled because for many it had significantly affected their mental health (Table 3).

Most participants thought acne affected their level of confidence in social situations and were concerned that their acne would change how they were perceived by others. Many participants thought their acne affected how they felt about themselves at school or work as well as how others perceived them in these settings. Concerns about how others view their acne continued for some participants into their professional lives, with some believing that having acne made them appear younger and less professional, trustworthy, or qualified in work-related interactions.

Choosing to cancel or postpone social interactions was a common experience among participants, particularly in the setting of acne flares. For many such interviewees, feeling the need to avoid socializing because of their acne had damaging mental health and self-esteem consequences. Participants also described that acne negatively affected their romantic relationships. Although most of these participants did not report that their romantic partners criticized their acne, they still felt high levels of self-consciousness and discomfort when revealing the extent of their acne to someone they were dating.

Some participants noted that they eventually developed a strong emotional resilience against their acne and reported that at a certain point they refused to allow their breakouts to affect how they felt about themselves or to prevent them from socializing. This resilience typically increased the longer that patients had dealt with their acne, and they often described a breaking point at which they began to let go of the stress around their breakouts (Table 3).

Participants described successful treatment as having completely clear skin over time or a manageable number of blemishes. Some patients focused on the reduction of the physical manifestation of acne on their faces, whereas others concentrated on the resolution of social and emotional repercussions of having acne, particularly in relationships outside their inner circle, such as professional acquaintances.

Participants described a wide range of experiences with their dermatologists, both positive and negative. Some participants described frustrating relationships with various dermatologists who continued prescribing acne treatments that the patients knew were not effective for their skin. Participants also expressed frustration when they felt pressured to use certain treatments, such as isotretinoin, that they thought were too strong for their acne.

Participants thought having a communicative, respectful relationship with their dermatologist was an important factor for successful treatment. Several mentioned spending years seeing different dermatologists before finally finding one who they thought listened to their concerns, was honest about treatments, and helped find a treatment regimen appropriate for their individual needs.

One participant shared that she thought her skin color was a factor in the kinds of acne treatments that were available to her. She shared that because she was Black, she experienced hyperpigmentation at a higher rate than others and had found that dermatologists often told her that nothing could be done about it (Table 3).

Most participants were well versed with a variety of topical and oral medications for acne (Table 4). Participants who described their experience using topical retinoids generally thought it was effective for some types of acne but did not always work to address cystic acne breakouts. Some participants described barriers to use, such as dryness and peeling, as well as inconvenient lifestyle changes, such as limiting sun exposure while using topical retinoids.

Most participants did not think oral antibiotics were appropriate treatments for their acne, specifically because of limited long-term effectiveness. Other problems participants encountered with the use of oral antibiotics were gastrointestinal adverse effects and yeast infections. Several participants described seeing positive results when using oral antibiotics, but these results were temporary. Others thought that antibiotics had never had a substantive effect on their acne.

Participants who had experience taking spironolactone generally described this as the most successful treatment they had tried. Common problems with this treatment were the length of time it took to become effective and adverse effects, such as irregular menstrual cycles, increased need to urinate, lightheadedness, and headaches. The adverse effects caused some participants to stop their spironolactone treatment, whereas others thought that the benefits from the treatment outweighed any adverse effects.

Participants had strong feelings about the use of isotretinoin to treat acne. Those who had experience taking isotretinoin thought that it was highly effective but that it could be disruptive to their everyday lives because of the need for multiple forms of contraception, frequent laboratory appointments to assess blood work, and adverse effects, such as excessive dryness and peeling. Some participants described challenges in getting their physician to prescribe isotretinoin for their acne.

Many participants were concerned about the adverse effects of isotretinoin and described it as a last resort approach to acne. Participants expressed concerns about dryness, need for contraception, having to abstain from alcohol to avoid negative effects on the liver, and the potential for mental health consequences.

Participants were generally open to the concept of participating in a comparative effectiveness clinical trial to understand the optimal treatment regimens for acne. Several participants added that they would specifically want to participate in such a study if they knew it would help themselves or others who had acne. Most participants were willing to be randomized and blinded to treatment allocation. Participants were amenable to being required to limit topical treatments, although a few participants shared that they relied heavily on topical treatments and would be hesitant to participate if required to discontinue their use. Those who were not interested in participating shared that it was because they already had a treatment that worked well for them and they did not want to change it or because they were generally wary of participating in trials.

The results of this qualitative study highlight that acne has multifaceted quality-of-life consequences in women. Although acne is often viewed as a disease of adolescence, more than 50% of women experience acne in their 20s and more than 35% in their 30s.¹⁵ The study participants consistently described acne-related concerns about their appearance that affected their social, professional, and personal lives, with many altering their behavior because of their acne. The importance of appearance-related concerns among persons with acne was also highlighted by a systematic review¹⁹ of the impacts of acne and a survey²⁰ on treatment outcomes conducted as part of a James Lind Alliance Acne Priority Setting Partnership.

Similar to smaller qualitative studies^13,14 among adults with acne, themes of depression, anxiety, and social isolation were commonly reported in the study. These findings are also aligned with studies^7-9,11,12,21 of adolescent acne in which many patients noted significant negative mental and emotional health issues. Given the high frequency of comorbid mental health disorders among patients with acne, identifying and addressing these comorbid mental health conditions is important in this population.^22,23 In addition, it is important for payers to recognize the impact of acne in adult women and to provide coverage for treatments in this population.²⁴

Many patients described frustration with finding a dermatologist with whom they were comfortable and with identifying effective treatments for their acne. In contrast, those who thought their dermatologist listened to their concerns and individualized their treatment plan reported higher levels of satisfaction. Issues identifying patient-centered and effective treatments have also been described among adolescents being treated for acne.¹⁰ In addition, 1 patient with skin of color expressed frustration with her dermatologists’ understanding of managing acne in patients with darker skin tones. Ensuring multiethnic training in residency is crucial to prepare dermatologists to care for patients of diverse backgrounds with acne.^25,26

Although isotretinoin was effective for many patients, concerns about adverse effects and challenges with access were common limitations. Additional patient education about isotretinoin adverse effects and treatment plans could be helpful.^5,27,28 Furthermore, as the literature to support reducing the frequency of laboratory monitoring increases, the elimination of excess blood draws may improve the experience of patients taking isotretinoin.^29,30 There is also a need to reduce the burden of iPLEDGE (a computer-based risk management program designed to further the public health goal to eliminate fetal exposure to isotretinoin).³¹

Although oral antibiotics are the most commonly prescribed systemic treatment for acne, with a previous study³² finding that they are used 3 to 7 times more often than alternatives such as spironolactone for women with acne, many patients described hesitancy regarding adverse effects and long-term effectiveness. These results are aligned with a survey that found that more than 75% of patients would prefer an antibiotic-free treatment option if possible.³³ In contrast, patients often described positive experiences with spironolactone, which may represent an effective alternative to oral antibiotics for women with acne.^28,34-38 The Institute of Medicine designates long-term treatments for acne as 1 of the top priorities for comparative effectiveness research, and patients in the current study were generally willing to participate in such research, which could provide important evidence to guide practice.^17,39

This study has limitations. It should be interpreted in the context of its qualitative design. Although patients from both academic and private practice settings were enrolled, patients in this study had relatively severe acne as related to their prior treatments, and the study findings may not generalize to other patient populations. As a result, some themes may be amplified or underrepresented because of the severity of acne present in this population. In addition, it was not possible to assess for differences between patients with truncal-only, facial-only acne vs truncal and facial acne.^40,41 Finally, complete demographic information for all participants could not be captured.

The women in this qualitative study described various lived experiences related to their acne, including concerns about appearance, mental and emotional health consequences, and disruption to their personal and professional lives. In addition, many patients described challenges finding effective treatments. Future trials to understand the optimal treatment approaches for women with acne are needed to improve outcomes in this population.

Accepted for Publication: May 21, 2021.

Published Online: July 28, 2021. doi:10.1001/jamadermatol.2021.2185

Corresponding Author: John S. Barbieri, MD, MBA, Department of Dermatology, University of Pennsylvania Perelman School of Medicine, 3400 Civic Center Blvd, South Tower, Seventh Floor, Philadelphia, PA 19104 (john.barbieri@pennmedicine.upenn.edu).

Author Contributions: Mss Neergaard and Nelson had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Barbieri, Barg, Margolis.

Acquisition, analysis, or interpretation of data: All authors.

Drafting of the manuscript: Barbieri, Neergaard, Nelson, Margolis.

Critical revision of the manuscript for important intellectual content: Barbieri, Fulton, Neergaard, Barg, Margolis.

Statistical analysis: Neergaard.

Obtained funding: Margolis.

Administrative, technical, or material support: Barbieri, Fulton, Neergaard, Nelson, Barg.

Supervision: Nelson, Barg, Margolis.

Conflict of Interest Disclosures: None reported.

Funding/Support: This study was funded by grant R34-AR074733-01A1 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases. Dr Barbieri receives partial salary support through a Pfizer Fellowship in Dermatology Patient Oriented Research grant to the Trustees of the University of Pennsylvania.

Role of the Funder/Sponsor: The funding sources had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.