Article Text

Original research
Views and experiences of people with acne vulgaris and healthcare professionals about treatments: systematic review and thematic synthesis of qualitative research
  1. Athena Ip1,2,
  2. Ingrid Muller1,
  3. Adam W A Geraghty1,
  4. Duncan Platt1,
  5. Paul Little1,
  6. Miriam Santer1
  1. 1 School of Primary Care, Population Sciences and Medical Education, Faculty of Medicine, University of Southampton, Southampton, UK
  2. 2 Faculty of Health and Medical Sciences, School of Health Sciences, University of Surrey, Guildford, Surrey, UK
  1. Correspondence to Athena Ip; a.ip{at}soton.ac.uk

Abstract

Objectives The objective of this study was to systematically review and synthesise qualitative papers exploring views and experiences of acne and its treatments among people with acne, their carers and healthcare professionals (HCPs).

Design Systematic review and synthesis of qualitative papers.

Methods Papers were identified through Medline, EMBASE, PubMed, PsychINFO and CINAHL on 05 November 2019, forward and backward citation searching, Google Scholar and contacting authors. Inclusion criteria were studies reporting qualitative data and analysis, studies carried out among people with acne, their carers or HCPs and studies comprising different skin conditions, including acne. The title and abstracts of papers were independently screened by three researchers. Appraisal was carried out using the adapted Critical Appraisal Skills Programme tool. Thematic synthesis was used to synthesise findings.

Results A total of 20 papers were included from six countries. Papers explored; experiences living with acne, psychosocial impact of acne, views on causation of acne, perceptions of acne treatments, ambivalence and ambiguity in young people’s experience of acne and HCPs’ attitudes towards acne management. Findings suggest that people often viewed acne as short-term and that this had implications for acne management, particularly long-term treatment adherence. People often felt that the substantial impact of acne was not recognised by others, or that their condition was ‘trivialised’ by HCPs. The sense of a lack of control over acne and control over treatment was linked to both psychological impact and treatment adherence. Concerns and uncertainty over acne treatments were influenced by variable advice and information from others.

Conclusions People need support with understanding the long-term management of acne, building control over acne and its treatments, acknowledging the impact and appropriate information to reduce the barriers to effective treatment use.

PROSPERO registration number CRD42016050525.

  • qualitative research
  • acne
  • dermatology
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Strengths and limitations of this study

  • This synthesis of qualitative studies provides a broader understanding around perceptions of acne and acne treatments than any single study, which can inform barriers and facilitators to treatment adherence.

  • The search strategy was comprehensive and used the Information Specialists’ Sub-Group search filter resource to ensure that all relevant terms were covered.

  • The methods were robust, including three researchers screening all papers identified from database searches, independent quality appraisal of publications and a team approach to developing codes, themes and model to best reflect the data.

  • The review was limited by gaps in the evidence base, which helps highlight future areas for further qualitative research.

Introduction

Acne vulgaris is a common skin condition worldwide.1 It can have a substantial impact on quality of life both physically and psychologically.2 Treatments for mild to moderate acne are topical preparations including topical retinoids or adapalene, topical antibiotics, combination topicals and azelaic acid.3 If these are not effective, oral antibiotics are prescribed or, in women, combined oral contraception or cocyprindiol. More severe acne is treated with oral isotretinoin.3 4

Quantitative research has found that adherence to acne treatments is poor.5 This is primarily the case for topical treatments for reasons including side effects, young age and forgetfulness.6 While quantitative research is useful for determining the prevalence and common reasons given for non-adherence, qualitative research is essential for understanding people’s views and perceptions around treatments and more fully understand barriers and facilitators to treatment adherence.

By synthesising qualitative research on acne, we can generate new understandings that go beyond the primary studies.7 This is useful for informing future research and for developing interventions to support people in effectively managing their condition.

The aim of this systematic review was to identify and synthesise qualitative papers exploring views and experiences of acne and its treatments among people with acne, their carers and healthcare professionals (HCPs).

Methods

The Enhancing transparency in reporting the synthesis of qualitative research statement was used to facilitate appropriate reporting for this synthesis of qualitative studies.8

Search strategy

Five databases were searched on 05 November 2019 using a comprehensive search strategy: Medline (1946–2019), EMBASE (1974–2019), PubMed (1996–2019), PsychINFO (1806–2019) and CINAHL (1981–2019). Databases were chosen to ensure that literature on nursing, social science, psychology and medicine were searched as comprehensively as possible. Other resources included backward and forward citation searching using Google Scholar, contacting authors of included papers regarding other articles or when full texts were unavailable.

The search strategy was developed through discussions with coauthors and a medical librarian at the University of Southampton. Searching for qualitative literature can be difficult and that is why we included a librarian and used the Information Specialists’ Sub-Group search filter resource to ensure that all relevant terms related to acne and qualitative research were covered (see online supplemental material A for the list of search terms). We defined qualitative as papers presenting qualitative method of data collection and analysis as well as presenting qualitative data (quotes). There were no date or language restrictions.

Supplemental material

Eligible papers reported on studies that used qualitative methods of data collection and analysis, presented qualitative data either standalone or distinct part of a mixed-methods study, included people with acne, HCPs treating acne or carers/parents of children with acne and studies that considered more than one skin condition that included acne.

Selection process

Three independent researchers screened the title and abstracts of the papers (AI, DP and IM). AI conducted the full-text screening of eligible papers and any uncertainties were discussed with coauthors.

Quality appraisal

An adapted version of the Critical Appraisal Skills Programme tool was used to provide an indication of strengths and weaknesses of the qualitative papers.9 All papers were included regardless of quality. Papers were appraised by AI, and other members of the research team (AWAG, MS and IM) independently appraised a third of papers each. Disagreements in quality assessment were resolved through discussion.

Data extraction

Study characteristics extracted from each paper included: author(s), country, year of publication, focus, participants, skin conditions, data collection, methodology, analysis and key themes presented by the author. The papers were repeatedly read by AI to ensure that all quotes and relevant text under the ‘results’ or ‘findings’ were extracted onto NVivo V.11 software to manage and code the data.10

Synthesis of findings

A thematic synthesis was carried out involving three stages.7 First AI carried out line-by-line coding of relevant text (quotes or authors’ descriptions). Next, the free codes were organised to develop descriptive themes across studies. A coding manual was produced to facilitate the systematic coding of the data. The themes identified were deliberated with IM, MS, AWAG and PL and any discrepancies were discussed until the agreement was reached. The third stage involved ‘going beyond’ the data to develop analytical themes that generate additional understanding from synthesising original studies. Analytical themes were produced through team discussions and a model was developed showing the interrelationship between themes and their association with treatment initiation (decision to start treatment) and adherence.

Patient and public involvement

No patients were involved in carrying out this systematic review. Following publication, results will be disseminated through lay summary and social media.

Results

The database search identified 2931 records and seven papers were found through other resources (2519 after removing duplicates). After eligibility screening, 20 papers were included in the synthesis (figure 1).

Figure 1

PRISMA flow diagram of search strategy and included papers.

Study characteristics

The included studies were relatively heterogeneous, primarily exploring the following topics: experiences living with acne, psychosocial impact of acne, complementary and alternative medicines (CAM), sexual life and acne, patients’ relationships with their doctors, views on causation of acne, perceptions of acne treatments, ambivalence and ambiguity in young people’s experience of acne and HCPs’ attitudes towards acne management. Methods of data collection included face-to-face, video or telephone interviews, written interviews online and searching online discussion forums. Studies were carried out in India, US, UK, Australia, Italy and Germany (table 1).

Table 1

Study characteristics of papers included in the synthesis

Quality appraisal results

The overall quality of the papers varied with longer articles providing more information for the checklist. Many of the studies did not explore reflexivity of the researcher in terms of their disciplinary knowledge and epistemological position. In addition, many of the papers did not include participant characteristics when presenting quotes. Some papers did not explicitly state the qualitative approach or a recognised approach to analysis. One paper reported findings from a commercial trial that could result in bias and therefore conclusions from this study should be drawn with caution.11

Synthesis of results

Four overarching analytical themes were further developed from descriptive themes generated in the line-by-line coding: (1) People with acne tended to view their condition as short-term, (2) impact of acne not recognised by HCPs, others or self, (3) people wanted to have a sense of control over acne treatments and acne and (4) a range of barriers to acne treatments and strategies to help cope with acne. Figure 2 presents how the analytical and descriptive themes influence people’s initiation and adherence to acne treatment. Table 2 presents a checklist of the studies that reported on each analytical theme. Example quotes or authors’ description of quotes are presented in table 3. General practitioners’ (GPs) views and perceptions are summarised separately as only one paper reported on this.

Figure 2

Model presenting the interrelationships between themes and how they influence treatment initiation and adherence. CAM, complementary and alternative medicine.

Table 2

Analytical and descriptive themes with study reference

Table 3

Analytical and descriptive themes with representative quotes or authors' descriptions

Acne is viewed as short-term

People with acne often seemed to view their condition as short-term and not requiring long-term treatment. Study participants commonly seemed to have little initial concern over their acne as they expected to ‘grow out of it’ due to the perception that their acne was caused by puberty or other underlying causes/triggers. Studies showed how people expected treatment to cure their acne as opposed to control it, suggesting that they did not view their condition as requiring long-term management, with implications for initiating and adhering to treatment (table 3).

Identifying potential causes or triggers of acne

A common perception across studies was of viewing acne as a ‘normal’ part of adolescence. However, most participants seemed to have followed a more chronic course with some experiencing acne as an adult, which led to frustration and confusion.12–17 People looked for other possible causes including hygiene and diet with the hope of ‘curing’ their acne. Hygiene concerns with regards to acne were related to dirty occupations, pollution, sweat, makeup and inadequate washing.13 18 Dietary considerations around acne included foods such as chocolate, soft drinks, fast foods, coffee, yeast and alcohol.13 15 Genetics and stress were less commonly mentioned by study participants.13

Expectation that treatment will cure acne not control it

People expected medical treatments to ‘cure’ their acne, often feeling disappointed when this was not met. Participants described treatment as ‘keeping their acne at bay’, being only partially effective or not working at all.14 19 This appeared to have implications for acne management, with disappointment leading to stopping treatment early or opting for alternative treatments in the absence of ‘instant’ results.

Impact of acne not recognised

People across studies experienced substantial impact because of their acne and were frustrated when they felt that this was not recognised by HCPs, friends and family. Physical, psychological and social impact were common and often led to problems with forming new relationships as well as maintaining current ones. Perceptions of blame from others and self-blame were apparent in the data, sometimes relating to the myths and misconceptions around acne causation. The perceived trivialisation by HCPs and work colleagues was common across the data and appeared to have implications for acne management including consulting behaviours.

Perceived physical impact

Physical impact was commonly discussed across studies and consisted of physical appearance, itching, quality of sleep, burning, scaring, redness and pain.11 12 15 16 18 20 21

Perceived psychological impact

Study participants described the psychological impact of acne as feeling embarrassed, self-conscious, angry about the perceived cause of their acne, low self-esteem, suicidal, changes in personality and feeling ostracised from society due to the image of ‘perfect skin’ portrayed by the media.11 12 15–19 21–23

Perceived social impact

The social impact of acne was commonly reported across studies. People engaged in avoidance behaviours had a negative effect on relationships due to feeling self-conscious about their appearance11 15 16 18 and a lack of confidence and worry about how they would be perceived.12 16 17 20 21 23 Bullying and teasing appeared to increase psychological impact.15–18 21 22 24 In terms of education and employment, participants reported missing school, feeling distracted,16 experiencing interpersonal difficulties (insensitive work colleagues and the public) and feeling self-conscious.15 16 21

Perceived blame

A number of studies reported on feelings of self-blame and blame inflicted by others.12 15 16 18 25 Family members were sometimes perceived to blame participants if they had not ‘grown out of it’ as expected. When participants perceived their acne to be caused by diet or hygiene, this sometimes led to self-blame as these were within their control.

Perceived trivialisation by HCPs, others and self

Participants in several studies perceived acne to be ‘trivialised’ by HCPs, for instance, leaving consultations feeling as though they were not listened to, feeling as though prescriptions were given without a second thought or feeling as though their condition was not taken seriously due to waiting for a referral to see a dermatologist.15 16 19 26 Participants also perceived trivialisation of acne among work colleagues, for instance, ignorance about acne and the need for appointments with HCPs, or around work absence.21 There was an element of ‘self-trivialisation’ as participants in some studies described feeling reluctant to take on the ’sick role’ mainly due to the stigma associated with acne, believing that their condition was a cosmetic issue rather than a medical one.12 As a result, people may try alternative treatments for their acne to avoid consulting the HCP.

Perceived control over acne treatments and acne

Across studies, there were two aspects of control: people’s perceived control over acne and their control over treatment.13 18 27 Their perceived control over treatment referred to people’s beliefs in their chosen treatment rather than the control being in someone else’s hands (HCP). For example, people in the studies opted for CAM and behavioural strategies, which they felt would alleviate the psychological impact of acne. Three studies reported on people’s perceived control over their acne including feelings of powerlessness when treatments were perceived as ineffective.11 16 17 One study (reporting findings from a commercial trial) found when people perceived increased control over their acne, this improved satisfaction with acne symptoms and alleviated the impact, regardless of acne improvement using a topical.11 Having control over treatment or acne appeared to help alleviate the psychological impact and improve adherence.

Barriers to acne treatments and use of coping strategies

Across studies, a key barrier to use of acne treatments was concern and uncertainty regarding their effectiveness, exacerbated by variable advice and support people received from others. Studies highlighted coping strategies discussed by participants, including concealment/compensation (as described below) and making comparisons, which some participants found useful in the short-term. Participants in many studies reported a preference for using CAM and behavioural strategies to address their acne. This could be viewed as a barrier to engaging with effective acne treatment or be perceived as a mechanism for coping through seeking control over the condition.

Concerns about perceived adverse effects and effectiveness of acne treatments

Concerns around topical treatments for acne included side effects (bleaching, irritation), strength of medication, speed of onset of action, what constituted appropriate application, storage, understanding different topicals and, as mentioned above, uncertainty around their effectiveness.14 16 28 One study found effective use of topicals increased control over acne and reduced the psychological impact, although they did not explore perceptions of treatment ineffectiveness.11 Two studies highlighted how patients viewed oral isotretinoin as an effective treatment, although they expressed concerns around the treatment’s side effects.19 29 Perceived effectiveness of oral antibiotics varied as participants either found them effective, ineffective or partially effective where they worked temporarily. Barriers included delayed onset of action, perceived strength of treatment and adverse effects.14 19 27 One study highlighted barriers such as cost of treatment and understanding processes used by health insurance companies.28 This study was carried out in USA and therefore, the barriers may not be relevant to the UK population.

Desire to use CAM and behavioural strategies

Some studies explored CAM and behavioural strategies for treating acne. CAM treatments included oils, citrus washes, aloe vera, tablets and vitamins. Participants reported a preference for CAM over medical treatments due to ‘natural’ ingredients and fewer adverse effects.27–29 Other reasons included sense of internal control and accessibility.18 Behavioural strategies included dietary manipulation, face washing and sun and sea exposure (less commonly mentioned). The belief that hygiene caused or exacerbated acne led participants to excessively wash or pick their acne to resolve the issue.13 17–19 25 Dietary manipulation included avoiding foods deemed unhealthy and increasing water intake.13 18 19

Receiving variable advice and support about treatments and next steps

Support from family members was appreciated and included encouragement to consult HCPs, suggestions about which products to try25 and some felt that humour about the condition or about their treatment (isotretinoin) from friends or family could make them feel less uncomfortable.17 21 Participants felt that support from friends with acne were useful as they were able to relate to their situation16 and recommendations from friends such as products to try were often seen as useful particularly for male participants as some female participants found the advice unsolicited.21 25 Advice from online discussion forums was felt to be variable and often consisted of treatment recommendations or suggestions about consulting and navigating health services.19

Concealment/compensation to cope with acne

Strategies to cope with acne included concealment to take attention away from their acne such as changing clothing and hairstyles.11 16 17 Applying makeup helped some participants cope emotionally, but for others, this emphasised their spots or wore off quickly and some viewed makeup as a cause of acne.12 16 People reported compensating for their acne by doing activities including martial arts18 or losing weight.25

Comparisons to earlier self and others

Strategies including making comparisons to others or their earlier self were seen as a double-edged sword, whereby participants either felt better about their acne or felt worse, further exacerbating the psychological impact.12 17 19 25 Participants made comparisons to other health conditions to validate the negative impact of acne or to feel grateful that things were not worse.12

Key differences between GPs and patients’ views and experiences

One study highlighted GP’s acknowledgement of the psychological impact as well as motivation to escalate severe cases for referrals.30 Research suggests that people’s own assessment of acne severity differs from clinical assessments that may explain the contrasting views compared with people with acne in other studies, where they felt HCPs did not always take acne seriously.31–33 The current study also found that GPs were uncertain about topical treatment effectiveness, which they posited may be related to patients’ treatment adherence.30

Discussion

This systematic review and synthesis of qualitative research highlighted four analytical themes that influence treatment initiation and adherence. People often viewed acne as a short-term condition resulting in implications for self-management, particularly challenges to long-term treatment adherence. The impact of acne was substantial for participants in these studies and they were often frustrated when they perceived others to trivialise their condition. The importance of perceived control was highlighted, including the wish to feel in control of acne and the wish to control treatment. Having control over either one appeared to help alleviate the psychological impact and improve adherence. People had common concerns around treatments that were further influenced by variable advice.

Strengths and weaknesses

To our knowledge, this is the first systematic review and synthesis of qualitative papers on acne. It provides a comprehensive overview of people’s views and experiences of acne and its treatments. We are confident that all relevant papers were included as three independent researchers were involved with screening the title and abstracts of papers. However, there is the possibility that we may have missed some studies because of our definition of qualitative and our inclusion/exclusion criteria whereby papers needed to present qualitative data, qualitative methods of data collection and analysis and provide a sufficient amount of information about the qualitative aspect if it was part of a wider study (eg, questionnaire development paper).

A potential weakness was the limited original research available as many of the included papers (eight) were from the same author. However, although these papers used the same sample, they focused on different research questions and looked at a breadth of peoples’ experiences. We found areas that were underrepresented including HCPs’ experiences treating acne, studies outside of UK and Australia and men with acne. The review was also restricted by the strengths and weaknesses present in the original papers.

Comparison with other studies

The findings are consistent with a review on the impact of eczema, psoriasis and epidermolysis bullosa, which found that people with chronic skin conditions experience negative social interactions.34

A review of qualitative studies on adherence to medicines found that people were reluctant to take medicines partly because of concerns over its use including adverse effects and perceived effectiveness.35 They also highlight how people wish to take control over their own treatment.35 These findings are consistent with those in this current study, which goes further by suggesting that an increased feeling of control was felt to alleviate the psychological impact and improve adherence.

Studies exploring other skin conditions (vitiligo, psoriasis and eczema) including a paper from this current synthesis have also found that patients feel their HCP trivialises their skin condition.26 36–39 Through synthesising the studies, we have also highlighted the role of self-trivialisation in influencing people’s consulting behaviours.

A quantitative systematic review of treatment adherence in acne found similar barriers around treatment adherence including adverse effects and delayed onset of action resulting in low adherence.6 Our qualitative synthesis explores this further, suggesting that treatment adherence is influenced by the variable advice received, desire to use CAM and behavioural strategies and perception around the causes of acne, particularly perception that it is a short-term condition.

Conclusion

This synthesis suggests the need for further research exploring HCPs’ views and experiences with people with acne as certain areas (eg, perceived trivialisation, treatment choice, acne as a short-term condition and the psychological impact of acne) could be better addressed from both sides. The findings highlight the importance of communicating the long-term management of acne and the importance of control over acne or control over treatment. Further research around providing support for people with acne is needed, with emphasis on the need for mitigating psychological impact. Finally, people need reliable information about acne treatments including how to use them appropriately, time taken until onset of action and how to manage side effects to help them to effectively manage the condition.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Twitter @IngridMuller7

  • Contributors Conception, design and planning of the study were by AI, IM, AWAG, MS and PL as this was part of AI’s PhD. Data curation, formal analysis and writing the original draft were by AI. AI screened all title and abstracts supported by IM and DP who carried out double screening of these articles. Full-text articles were screened by AI and any uncertainties were discussed with the team. AI carried out the quality appraisal on all papers and MS, AWAG and IM independently appraised a third each of these. All authors were involved with reviewing and editing the manuscript.

  • Funding This study is funded by the National Institute for Health Research (NIHR) School for Primary Care Research PhD Studentship for AI. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplemental information.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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