Fifty participants were recruited and interviewed; 34 adolescents and 16 adults with moderate–severe acne from the UK (N = 20 adolescents and N = 10 adults), Italy (N = 7 adolescents and N = 3 adults), and Germany (N = 7 adolescents and N = 3 adults). The demographics of the sample are shown in Table 1. Over half of the adolescent sample was female and three quarters identified themselves as white, with an mean age of 15 years. The adult sample had a mean age of 28 years; however, the UK sample was older on average (mean age 32 years) than the Italian (mean age 23 years) and German (mean age 19 years) samples. The adult sample had an equal number of male and female participants. Most of the sample rated their acne as at least moderate at the time of the interview and at least severe when at its worst.
For most participants, acne had an impact on many areas of their HRQL; however, one adolescent participant reported no impact on his HRQL. The analysis identified seven main areas of HRQL that are affected by acne: emotional functioning, social functioning, relationships, leisure activities, daily activities, and impact on sleep and school/work. The perception of acne from others and their reaction to it was also a common concept. Figure 1 shows the percentage of adolescents and adults reporting an impact on each of the domains, demonstrating that for almost all domains, a higher proportion of adult participants reported an impact compared with adolescents. Each of the domains and their inter-relationships are described in the sections below, with example quotations provided in Figs. 2 and 3.
All except one adolescent reported that acne had a detrimental impact on some aspect of their emotional well-being, particularly on their self-confidence or self-esteem. For some participants, this was due to reaction from others. Having less confidence impacted other areas of participants’ lives, such as participation in school activities and socializing. Two-thirds of adolescents reported that acne made them feel down and almost half of participants felt lonely or isolated. Half of adolescents also felt frustrated by their acne because of having no control over it or treatments not working.
Adult participants reported similar emotional impacts; almost all felt that acne lowered their self-confidence or self-esteem, made them feel down or depressed, and self-conscious or embarrassed. Adults also reported feeling isolated or lonely because of their acne.
Over two-thirds of adolescent and all adult participants reported that acne had an impact on their social activities. In particular, participants mentioned that interacting with strangers is difficult; they felt that people focused on their acne when speaking to them or judged them because of their acne. Participants did not want to socialize when their acne flared up and some participants did not attend activities if it meant that they would not be able to wear makeup.
Most participants reported that acne affected their use of social media. This included not posting pictures of themselves if their acne was visible, editing photos before posting them, asking people to remove photos of them, avoiding being in photos, or making sure they were in the background of group pictures.
Almost half of adolescents and several adults reported that acne has an impact on them when talking to unfamiliar people. For some this was due to a lack of confidence, while others worried how new people would perceive their acne. Participants described feeling “discomfort”, “embarrassed”, “anxious”, or “intimidated” when talking to new people. Some adolescents reported that acne has an impact on forming relationships with girlfriends/boyfriends, for the same reasons. Two adult participants mentioned that their acne had caused relationships to end. Some adolescents also discussed problems acne caused with their friendships; this included friends making fun of their acne or friends not understanding when they complain about their acne. Almost half of the adolescent sample had friends with acne, which meant that they found it easier to cope with their own acne. In contrast, several adults did not have any friends with acne and therefore felt they did not have anyone to talk to who understood.
The leisure activities most commonly affected by acne were swimming and sports/exercise. Participants did not like to go swimming because other people would see more of their acne; some felt that chlorine would aggravate their acne, others did not want to be seen without makeup, and some adults did not want their acne scars to be visible. Taking part in sport was also affected by acne for several reasons; some participants found that their acne was made worse by sweat, while others did not want to join teams with strangers as they felt they would stare at their acne. Participants also reported feeling self-conscious about their acne when getting changed or when wearing an athletics vest. Four adolescents discussed acne having an impact on them taking part in activities such as acting or public speaking because they did not have the confidence to stand up in front of others.
Both adolescents and adults discussed the time-consuming aspect of acne, having to allow time for their skin care and treatment routine each day. All female participants discussed makeup; a few did not wear cosmetics as they felt it would make their acne worse, others used makeup to cover up their acne and make it less noticeable. Some would not leave their house without makeup on. Some participants did not wear certain clothes because of their acne, as they did not want their shoulders or chest to be visible or they did not want new clothes to be bleached by their acne medication. Participants would feel anxious or embarrassed and feel like people were staring at them; therefore, they avoided going out when their acne was at its worst.
Impact on Sleep
Acne had an impact on sleep for a third of adolescent and half of adult participants. For several this was due to pain or soreness caused by their acne, which would make it difficult to get to sleep; for others itchiness made it difficult to sleep. Three participants sometimes found it difficult to sleep because they worried about their acne or felt depressed about it.
Impact on School or Work
All of the adolescent participants were at school or college; although most felt that their school work was not affected by acne, some mentioned feeling distracted by their acne when it was at its worst. Three participants contributed less to class activities because of the impact of acne on their self-confidence. A few participants were sometimes bullied or picked on at school about their acne. For two participants, acne affected them to the extent that they took days off school when their acne was at its worst.
Acne also affected some adult participants’ work. Two participants felt they were less likely to get jobs because they would be judged on their acne, while another opted to work at home when his acne flared up under the pretense of having chickenpox. One participant had lost her job because she would not go to work when her acne was bad, another participant had resigned from her job because she felt people were laughing at her acne. A student nurse felt patients thought he had an infection when his acne flared up and therefore did not want him to treat them.
Perception of Acne/Reaction of Others
Most participants had experienced people being mean or insensitive to them about their acne. For adults this was more common when they were younger and people were generally now more sympathetic. Many participants felt that people stared at them because of their acne; this made them feel self-conscious or nervous and affected their self-confidence. Some participants felt that they are judged on the basis of their acne and are viewed in a negative way because of it.
Five adolescents and half of adults felt that people thought their acne must be their fault in some way; either caused by a lack of hygiene and not looking after their skin properly, a bad diet, or drinking alcohol.
Participants were asked whether they felt their acne is taken seriously by other people. Adolescents generally felt their acne is taken seriously, particularly by their family and their doctor. Over half of adults felt their acne is not taken seriously by others, including their general practitioner (GP); some had to visit their GP several times before they were referred to a dermatologist.
A conceptual model was developed from the qualitative data, which illustrates the impact of acne on HRQL and the links between concepts (Fig. 4). Emotional functioning is central to the conceptual model, as this appeared to have a subsequent impact on all other areas of HRQL. The arrows in the model are based on the qualitative data where participants indicated that concepts are linked and indicate the direction of influence. The dotted arrows indicate a potential moderator that can have a positive or negative influence on the extent to which HRQL is impacted. A concept that was common throughout adolescent and adult interviews was the perception of acne from others and their reaction to it, which potentially had an impact on all areas of HRQL.
Attributes of Topical Acne Treatments
Participants were asked to rate how important several different acne treatment attributes are to them on a scale from “not important at all” to “critical/essential”. The same three attributes were rated most highly by adolescents and adults: treatment works quickly, does not cause irritation, and does not bleach. Some example quotations about the treatment attributes are displayed in Fig. 5. For adolescents it was important that an acne treatment does not contain alcohol; several felt that alcohol might sting or irritate their skin and cause a burning sensation. This attribute was generally less important for adult participants who felt that the treatment ingredients were not important as long as the treatment was effective. Some participants felt it was very important for a treatment to only require application once a day; however, some participants would apply it as many times as necessary if it was effective. For some participants it was important that the treatment could be applied with their fingers rather than an applicator or pad as they felt it would be more hygienic and convenient. Similarly, for convenience, some participants preferred a treatment that did not need to be kept refrigerated.