Patients’ Views About Skin Self-examination After Treatment for Localized Melanoma

Key Points

Question  What are the views of patients with melanoma on the importance of skin self-examination and what role do they see for new digital technologies to support skin examinations?

Findings  In this qualitative interview study among 37 patients with localized melanoma (American Joint Committee on Cancer stage 0, I, or II), participants were aware of the importance of thorough skin self-examination but showed a lack of confidence in undertaking it. Many participants were receptive to new digital technologies to assist them in performing thorough skin self-examination, provided they had sufficient technical support to use these new tools.

Meaning  Efforts to integrate new digital technologies to increase regular and thorough skin self-examination are warranted, provided sufficient technical support is provided.

Importance  Skin self-examination (SSE) is a key factor in the early detection of melanoma, and many new and recurrent melanomas are first detected by patients themselves or their family members.

Objective  To explore the views of patients with melanoma regarding SSE in general, as well as their attitudes toward using novel digital technologies to support their own SSE.

Design, Setting, and Participants  Qualitative study with semistructured interviews that were conducted from June 20 to December 12, 2016, with 37 individuals in Sydney, Australia, who were previously treated for a first primary localized melanoma during 2014 and had not had a recurrence or new primary melanoma in the time since treatment.

Main Outcomes and Measures  Patients’ views and experiences, analyzed thematically.

Results  A total of 37 patients (11 women and 26 men; median age, 67 years [interquartile range, 59.5-72 years]) were interviewed. Participants perceived SSE as important for the early identification of local recurrence or new primary melanomas. Despite this belief, participants did not report undertaking full-body SSE on a regular basis. Factors that influenced their low engagement in thorough SSE included lack of self-efficacy, reliance on clinician consultations as the primary means of melanoma detection, and fear of cancer recurrence. Regarding the use of digital technology to assist with SSE, the key motivating factors in favor of such tools were the ability to track changes in lesions over time and the use of automated reminders to undertake SSE. Deterrents included a lack of confidence in undertaking SSE and in using new technology.

Conclusions and Relevance  Patients with melanoma are aware of the importance of thorough skin examinations. However, a lack of confidence in their ability to undertake SSE and reliance on clinicians as the primary means of melanoma detection may inhibit patients from undertaking regular and thorough SSE. Patients may benefit from new digital technologies that assist them in undertaking SSE, provided they have appropriate education and technical support.

Skin self-examination (SSE) by patients after treatment for a localized melanoma is a key method of surveillance for detecting new or recurrent melanoma,^1,2 and may substantially reduce mortality from melanomas.³ Despite these benefits, most patients fail to undertake SSE thoroughly and regularly, with only 44% of Australian patients with melanoma and 14% of US patients with melanoma reporting that they examine all parts of the body.^4,5 The lack of thoroughness in SSE is reflected in its suboptimal sensitivity (detection of proven melanomas, 25%-93%) but reasonable specificity (correct assignment of lesions as nonmelanoma, 83%-97%).⁶ A randomized trial found that providing patients and their partners with skills training (delivered face-to-face) increased the detection of new melanomas ahead of their clinic visit.⁷ Patient or partner detection of melanomas increased from 0% in the control group (none of the 16 new or recurrent melanomas in 99 people were patient detected) to 81% in the intervention group (43 of the 53 new or recurrent melanomas in 395 people were patient detected).

Other research suggests that digital technologies such as smartphone apps and teledermoscopy may improve the sensitivity of SSE for melanoma detection.⁸ Murchie and colleagues⁹ developed and piloted a digital tablet-based application to prompt, record, and respond to regular SSE in people previously treated for melanoma (the ASICA [Achieving Self-directed Integrated Cancer Aftercare] Skin Checker app). This app was found to be acceptable and safe for patients to use. Manahan and colleagues¹⁰ undertook a pilot study of patient-performed teledermoscopy among people at high risk of a first primary melanoma, and found patient-performed teledermoscopy to be a feasible method of surveillance. Building on these developments, a recent study has described a new model of follow-up care for patients after treatment of localized melanoma: patient-led surveillance.⁵ Compared with traditional clinician-led surveillance, the new model has increased reliance on patient detection of melanoma that prompts unscheduled clinic review and may include fewer routinely scheduled clinic visits. The increased support needed for patient-led surveillance may be achieved through face-to-face skills training and/or new digital technologies, including teledermatology. This support is coupled with timely access (<2 weeks) to review by a specialist should the patient detect anything concerning.

The aim of this study was to investigate patients’ views on SSE and the use of digital technology for surveillance as a part of follow-up after undergoing treatment for localized melanoma.

In line with qualitative methods,¹¹ we aimed to recruit a diverse rather than representative sample of patients. Accordingly, we invited participants with varying sex, residence, and melanoma stage from the 230 patients who had answered a telephone survey about their preferences for, and experience of, follow-up after treatment for localized melanoma (American Joint Committee on Cancer stage 0, I, or II).^5,12 To match the intended clinical population in which patient-led surveillance might be used, we restricted selection to patients who had not developed a recurrence or a new primary melanoma. We sent invitations by postal mail and email in sequential rounds and continued recruiting participants until data saturation was achieved. The study was approved by the University of Sydney Human Research Ethics Committee and the Melanoma Institute Australia Governance Committee. All participants provided written informed consent before taking part in an interview. We followed the Standards for Reporting Qualitative Research checklist in the reporting of this study.¹³

Semistructured interviews were conducted from June 20 to December 12, 2016, with individual participants via telephone. An interview guide was developed to structure the discussion (eTable in the Supplement). Prior to the interview, participants were also emailed a pictorial illustration of how the ASICA app is used to support SSE and 2 short videos on patient-performed mobile teledermoscopy. Data collected during the initial interviews were used to refine the interview guide to ensure that emerging topics were also explored (Box 1). The interviews were conducted by 2 of us with experience in qualitative interviewing (A.K.S. and J.H.). The research team discussed and reviewed the interview data regularly to check whether new themes were being identified that required examination and to assess progress toward data saturation.¹⁴ Data saturation was reached once few or no new data were being generated and the new data fit into the already developed categories.¹¹ This was assessed iteratively throughout the process by reading and rereading the interview data across the transcripts, within the coded categories, and by comparing participant characteristics within the coded data and then later within the developed themes. This process enabled us to compare whether different themes arose according to participant characteristics, including age, sex, and melanoma stage. The interviews were audio recorded and transcribed verbatim by a professional transcriber. Demographic and clinical data were obtained from questionnaire items completed by participants as part of a previous study.^5,15

Box Section Ref ID

The interview data were analyzed thematically, which involved thoroughly reading the transcripts, developing a coding framework, coding the data systematically, and defining key recurring themes across the set of transcripts.¹⁶ We used a matrix-based method of thematic analysis used in previous research¹⁷ (Box 2). The coding framework was initially developed using the semistructured interview guide and then further refined according to the patterns of ideas and themes identified in the data. Two of us (M.D. and A.K.S.) independently read the transcripts and then developed the coding framework, which was also reviewed by the research team. One of us (M.D.) coded all 37 transcripts; another of us (A.K.S.) independently coded 8 transcripts (22%) and examined all coded data to check consistency with the themes in the final framework. Any disagreements between coders were resolved through discussion with the research team.

Box Section Ref ID

The qualitative data analysis software packages NVivo, version 11.0 (QSR International) and Excel 2013 (Microsoft Corp) were used to facilitate the thematic analysis. Using Excel, we analyzed data in the form of a framework with overarching themes as separate spreadsheets, subthemes as columns, and participants as rows.

A total of 37 participants completed a telephone interview between June 20 and December 12, 2016. Their demographic characteristics are presented in Table 1. Median participant age was 67 years (interquartile range, 59.5-72 years), 70% of the sample (n = 26) was male and 30% of the sample (n = 11) was female. The patients resided in both metropolitan (25 [68%]) and rural areas (12 [32%]). The interviews lasted a mean of 20 minutes (range, 9-39 minutes).

We identified several key themes related to participants’ personal experiences and views on skin examination that are summarized below with illustrative quotes.

Among participants who reported engaging in routine SSE, they perceived this behavior to be an important surveillance strategy. (“Oh I think that’s vital, yes, very important that people are looking at their skin.”)

Some participants perceived SSE as particularly important for monitoring a particular lesion. Some responses indicated that they may be checking too frequently (which may decrease the effectiveness of SSE to detect a change), emphasizing the importance of educating patients on when to check, as well as how to check. (“….just like an everyday basis, yeah. Unless there’s anything that I’m a bit concerned about, so I just keep an eye on it for a little while and then if I’m concerned, I just go back to the doctor.”)

Most participants did not have a detailed and specific set routine for SSE, but some did describe a general series of steps they used. (“Well if I see something, I feel something, like if I’m just looking over my body, not that I look at it all the time, but I feel something on my hands, on my elbows or on my forearms or there’s something that doesn’t look right, I just usually put a pen around it and go and see the doctor.”)

Family members—usually partners—were described as a main source of support when performing SSE, particularly to assist with checking areas of the body that are difficult to see (such as the back and backs of legs).

Personal perceptions of confidence in performing SSE were divergent; some individuals reported feeling confident in undertaking SSE and others less so. There was a range of factors that participants linked to their level of confidence in performing SSE; these included experience around skin cancer such as identification of a previous melanoma by the participants themselves. (“Very confident at being able to look at it. …with all my experience of melanoma and all the other BCC [basal cell carcinoma] type stuff and just regular spots.”

Conversely, if participants had not identified their previous melanoma or felt that they or their physicians had “missed it,” then this belief was linked to low confidence in SSE. “It was only really by chance that it was picked up, so even though I’d been going every year, the experts didn’t pick it up. So yeah, that’s made me a little bit sort of uncomfortable about my ability to pick things up as well.”

Most participants reported a positive attitude toward SSE, and an ability to integrate SSE in their regular behavioral practices and lifestyle choices. (“I think I’ve been doing it for such a fair while, it just becomes—it’s like cleaning your teeth—it just becomes part of what you’re doing.”) Reasons for engaging in SSE were diverse; the motivating factors for performing SSE are summarized in Table 2.

Despite positive perceptions of SSE, many participants did not consider themselves to be proficient in SSE and reported a strong preference for “the experts” (ie, medical professionals) to conduct all skin examinations. Table 3 summarizes the barriers and deterrents to performing SSE identified by the participants. Among participants who were not undertaking SSE, a key barrier was lack of confidence. Individuals who had experienced a misidentification of melanoma by a clinician also reported lacking competence in SSE. (“If someone with that much expertise and a doctorate in that field doesn’t always know, it’s a little hard for someone to be really sure themselves in self-examination. But I still think, overall, I still think it’s a very good thing to do.”)

Overall, participants expressed positive attitudes toward the routinely scheduled clinical visits they attended for follow-up. Participants reported feeling reassured by the frequency and thoroughness of the skin examinations provided independently by their clinicians, and they valued the clinicians’ expertise and experience. (“I just feel comfortable if someone confirms that they feel it’s okay as well.” “You actually need someone independent looking at it to give you any sense of comfort.”)

Many participants recognized the routinely scheduled clinic visit as the principal means for detecting melanoma. This belief was seen as a potential barrier to reducing the frequency of scheduled visits, as well as undertaking regular SSE and acting on any findings (eg, through booking an unscheduled clinic visit). (“I would see them—’the doctors’—as the main source of detection. …yes, I absolutely do think specialist is the primary means of detecting melanoma and nonmelanoma skin cancer. I see something on my skin and I think in 6 months’ time they’ll be looking at it anyway. Self-surveillance is probably not worthwhile for me.”)

Participants also perceived routinely scheduled clinic visits as a type of self-care and felt that attending routine appointments was a form of taking responsibility for their health. (“It’s part of the regime I’ve got to do. It’s sort of, I don’t know, bit like brushing your teeth, I suppose.”)

Participants were asked if they would consider reducing the frequency of their scheduled clinic visits if they had increased SSE support, and overall they were open to such changes, if this was recommended by their physician. (“I just rely—I don’t decide that, the doctor decides that, the routine, the frequency.”)

We identified various reasons why patients prefer to fully rely on their clinician for the detection of changes in the appearance of lesions or moles. These reasons included patients’ lack of confidence in their capacity to successfully perform SSE, perception of being at high risk of melanoma, and views that consulting the experts was the best way to take more responsibility for their health. (“But I’m very fortunate that I’m getting really thorough examinations, I’m doing my bit.”)

Table 2 summarizes the motivation factors for why participants might use digital technologies to help with their routine SSE. Participants responded positively to using technologies to assist with SSE, particularly for identifying and keeping track of changes in lesions over time. (“I could definitely use that. It’s the ‘spot the difference’ over a period of time thing that I struggle with.”)

Using new technologies was also described by participants as a way of taking responsibility for their health, which was similar to views on attending routine follow-up appointments. (“If there was a good reason to take over this responsibility, well every piece of technology that assisted you to do that would be good and I would use it.”)

Patients perceived teledermoscopy as a supplementary tool to complement their physician’s visits. However, they expressed reluctance for the apps to replace face-to-face visits with their clinician. (“It would not reduce those scheduled visits. It would be just kind of like an extra thing.”)

Some patients also thought that the apps may be useful to remind and prompt them to perform SSE. (“I think it’s certainly better than just saying, check your skin, you know? It’s like it’s actually giving you some instruction and it’s— well it’s got a reminder there, which is probably important for old people who forget things.”) Patients also perceived apps to be most useful for patients living in remote areas.

Barriers to using apps or teledermoscopy are summarized in Table 3. Key barriers and deterrents included a lack of confidence in using technology in general, lack of confidence in the app’s reliability, and a lack of confidence in performing a thorough SSE with the aid of technology.

The Figure summarizes the thematic schema of patients’ experiences and perspectives of melanoma follow-up. Perceived confidence in SSE influenced the perception of the importance of routinely scheduled clinic visits for melanoma surveillance, which influenced attitudes toward digitally supported SSE. Low confidence in SSE led to reluctance to consider patient-led surveillance as an alternative to clinician-led surveillance. Low confidence in SSE also directly influenced patients’ attitudes toward apps and teledermoscopy. Having high confidence in performing SSE and an openness to considering patient-led surveillance was integral to being open to using apps, enabling self-care, enhancing reassurance, and engagement in care planning. No new or different themes were identified according to participant age, sex, or melanoma stage.

This study provides important information about the views and perceptions of SSE and digitally supported surveillance by patients with melanoma. Low confidence in SSE is a key barrier to patient-led surveillance and to the use of digital technologies for SSE. Patients who have had melanoma are very aware of their risk of future melanoma. Moreover, patients understand the importance of SSE for early identification of melanoma. Perceived lack of competence and reliance on routinely scheduled clinic visits likely contribute to patients’ low engagement in thorough SSE.

Most participants only checked part of their body, and thorough and comprehensive SSE was uncommon. This finding echoes previous findings that thorough and regular SSE is only performed by 9% to 18% of patients, even though a much larger proportion of individuals may examine some areas of their skin infrequently.^18,19

In our study, lack of a partner to help check hard-to-see areas during SSE has been identified as a barrier to SSE by patients with melanoma. Possible solutions to this barrier may be to ask a family member or close friend to assist with hard-to-see areas, as well as using aids such as a full-size and/or handheld mirror.

Routinely scheduled clinic visits were perceived to provide different emotional benefits to patients compared with SSE. Many patients with melanoma expressed a strong reliance on routinely scheduled clinic visits to detect melanoma, which was attributed to limited confidence in their capacity to successfully perform SSE. These patients preferred to rely on highly trained clinicians to examine their skin for changes suggestive of melanoma, and regular expert review created a sense of reassurance and self-involvement in their personal care.

Many patients with melanoma were willing to consider using digital technologies to assist in their SSE. They were interested in playing a more active role in their melanoma surveillance by being more aware of the lesions present on their skin, and regular SSE has been found to empower patients in this way.²⁰ Giving patients these new digital technologies may help them to recognize suspicious lesions and prompt them to undergo clinical evaluation ahead of a routinely scheduled clinic visit. By facilitating regular and thorough SSE and rapid review by a clinician as needed, new technologies may provide patients with the confidence to lead surveillance of their body.

The strengths of this study include use of a large sample for a qualitative interview study, providing a rich, in-depth evidence base for future intervention development. To our knowledge, this is one of the first studies to assess the perceptions of patients with melanoma of the use of new digital technologies in surveillance for recurrent or new primary melanomas. Information around motivators and barriers for digitally supported SSE will be useful in designing interventions to test the efficacy of digital technologies for SSE.

Our study also has some limitations. Although our study included a range of patient perceptions and experiences, the sample was recruited from a single tertiary center, and we may not have captured the full diversity of views of a wider population of patients with melanoma. Further research could explore perceptions of patients who are managed solely in primary care. Also, although we identified no new themes according to participant characteristics such as age, further exploration of this possibility may be useful for intervention planning.

Most patients with melanoma are aware of the importance of thorough SSE and some are receptive to new digital technologies to assist them in performing SSE. Future research might help further define the subset of patients who are most likely to adopt these new technologies to assist them in their SSE. Efforts to test the effectiveness and safety of these new technologies in improving SSE practices and promoting patient-led surveillance are warranted.

Accepted for Publication: February 21, 2019.

Corresponding Author: Katy J. L. Bell, PhD, School of Public Health, The University of Sydney, Edward Ford Building A27, Sydney, New South Wales 2006, Australia (katy.bell@sydney.edu.au).

Published Online: May 15, 2019. doi:10.1001/jamadermatol.2019.0434

Author Contributions: Drs Dieng and Bell 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: Dieng, Smit, Morton, Cust, Irwig, D. Low, C. Low, Bell.

Acquisition, analysis, or interpretation of data: Dieng, Smit, Hersch, Cust, Irwig, Bell.

Drafting of the manuscript: Dieng, Smit, Morton, C. Low.

Critical revision of the manuscript for important intellectual content: Dieng, Smit, Hersch, Cust, Irwig, D. Low, Bell.

Statistical analysis: Dieng, Morton, Bell.

Obtained funding: Irwig.

Administrative, technical, or material support: Smit, Morton, Bell.

Supervision: Morton, Bell.

Conflict of Interest Disclosures: None reported.

Funding/Support: Work on this study was supported by the Australian National Health and Medical Research Council ([NHMRC] Program Grant No. 633003, Centre of Research Excellence grant no. 1104136). Dr Morton received salary support from Australian NHMRC Translating Research Into Practice Fellowship #1150989. Dr Cust received Career Development Fellowships from the NHMRC (grant no. 1147843) and Cancer Institute New South Wales (grant no. 15/CDF/1-14). Ms Smit received a Research Training Program Stipend Scholarship and a Merit Top Up Scholarship from the University of Sydney, and a Top Up Scholar Award from the Sydney Catalyst Translational Cancer Research Centre.

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.

Additional Contributions: We thank the participants for volunteering their time to participate in the telephone interview and for making this study possible.