Current Utilization of Qualitative Methodologies in Dermatology: A Scoping Review

Abstract

The focus of this review was to determine how qualitative methods are used in dermatology research and whether published manuscripts meet current standards for qualitative research. A scoping review of manuscripts published in English between January 1, 2016 and September 22, 2021 was conducted. A coding document was developed to collect information on authors, methodology, participants, research theme, and the presence of quality criteria as outlined by the Standards for Reporting Qualitative Research. Manuscripts were included if they described original qualitative research about dermatologic conditions or topics of primary interest to dermatology. An adjacency search yielded 372 manuscripts, and after screening, 134 met the inclusion criteria. Most studies utilized interviews or focus groups, and researchers predominantly selected participants on the basis of disease status, including over 30 common and rare dermatologic conditions. Research themes frequently included patient experience of disease, development of patient-reported outcomes, and descriptions of provider and caregiver experiences. Although most authors explained their analysis and sampling strategy and included empirical data, few referenced qualitative data reporting standards. Missed opportunities for qualitative methods in dermatology include examination of health disparities, exploration of surgical and cosmetic dermatology experiences, and determination of the lived experience of and provider attitudes toward diverse patient populations.

Introduction

Qualitative research involves the collection of non-numerical data and includes methods such as interviews, focus groups, observations, and textual analysis. These methodologies explore the how, why, and where behind social phenomena (Green, 2018). In health research, qualitative research can complement quantitative methods by answering questions about patients’ lived experience of disease and serve as the bridge between controlled studies and day-to-day medical practice (Denzin and Lincoln, 2008; Green, 2018). Similar to quantitative methods, qualitative methods must adhere to firm research standards. Consolidated criteria for reporting qualitative research (COREQ), developed in 2007 (Tong et al., 2007), and the Standards for Reporting Qualitative Research (SRQR), developed in 2014 (O'Brien et al., 2014), provide recommendations for conducting qualitative research and reporting criteria. Qualitative research performed with rigor improves medical care and increases empathy for people living with skin disease, so it is important to promote the use of quality standards (Mays and Pope, 2020).

Qualitative methods in dermatology are of particular importance because both the impact of disease and treatment is often measured by patient experience rather than mortality. A series of recent editorials in the British Journal of Dermatology (BJD) (Nelson, 2016, 2015) underscored the essential role of qualitative research not only to capture patient experience of disease but also to foster empathic care in medical education (Brooks, 2017).

Despite their potential, little is known about the uptake of these qualitative methodologies and the quality of the reported studies in dermatology. To address this gap, we performed a scoping review to analyze the current state and quality of qualitative methodologies in dermatologic research and to identify opportunities for future development.

Results

The original search included 372 results. After title and abstract screening and full-text screening, 134 studies were included in the final review (Figure 1).

Figure 1.

Study flow diagram. Adapted from the study by Page et al. (2020).

The characteristics of included studies are reported in Table 1. Of these studies, 127 represented original work, and seven were systematic reviews (Ablett and Thompson, 2016; Barisone et al., 2020; Ip et al., 2021; Nakayama et al., 2016; Singh et al., 2019; Sumpton et al., 2020; Teasdale et al., 2021). Studies occurred in 23 countries, with the majority conducted in the United Kingdom and the United States (49 of 134, 36.6% and 43 of 134, 32.1%, respectively). The BJD published the largest percentage of included manuscripts (27 of 134, 20.1%), followed by the British Medical Journal Open (15 of 134, 11.2%). A total of 70 manuscripts (70 of 134, 52.2%) included dermatologists as an author, and most manuscripts were conducted in a collaborative effort between dermatologists or other healthcare professionals and social scientists. A minority of studies (15 of 70, 21.4%) were conducted exclusively by dermatologists (Table 1).

Table 1.

Manuscript Characteristics

Characteristics	Data
Sample size, mean (IQR)
Original study, n = 127	27 (20‒52)
Systematic reviews, n =7	463 (210–1007)
Methods, n (%)
Focus group	37 (27.6)
Interview	104 (77.6)
Semistructured	82 (61.2)
Unstructured	5 (3.7)
Structured	4 (3.0)
Textual analysis	18 (13.4)
Open-ended survey	12 (9.0)
Mixed methods	20 (14.9)
Other methods	14 (10.4)
Observations	7 (5.2)
Author affiliations, n = 1341, n (%)
Dermatology	70 (52.2)
Psychology	46 (34.3)
Public health	16 (11.9)
Sociology	14 (10.4)
Other medical	83 (61.9)
Allergy	4 (3.0)
Primary care	22 (14.2)
Rheumatology	15 (11.2)
Nursing	16 (11.9)
Psychiatry	6 (4.5)
Pediatrics	9 (6.7)
Other fields	29 (21.6)
Epidemiology	6 (4.5)

Criteria	Yes (%)	No (%)
References formal standards for reporting qualitative research	28 (21.1)	105 (78.9)
Justifies sampling strategy	99 (78.6)	27 (21.4)
Justifies data analysis strategy	125 (94.0)	8 (6.0)
Includes empirical data	115 (86.5)	18 (13.5)
Discusses theoretical framework or paradigm	30 (23.8)	96 (76.2)
Meets any criteria	131 (98.5)	2 (1.5)
Meets all criteria
Original Studies	8 (6.3)	118 (93.7)
Systematic reviews	6 (85.7)	1 (14.3)

Abbreviation: IQR, interquartile range.

¹For included studies, more than one author affiliation could be chosen, and multiple authors with the same affiliation were only counted once in each category for a given manuscript

Qualitative methods utilized in dermatologic research

Most studies utilized interviews (104 of 134, 77.6%) or focus groups (37 of 134, 27.6%) (Table 1). Of 18 studies (18 of 134, 13.4%) using textual analysis, some utilized online forums as their main source of data: for instance, one manuscript analyzed online forum conversations between women with lichen sclerosus (Bentham et al., 2021). Methods less commonly utilized included free listing (a technique where researchers give participants a prompt and ask them to list the first thoughts that come to their heads), sharing circles, cartography, and observation. For example, one manuscript reported observations of a general practice to characterize how primary care providers understand atopic eczema (Cowdell, 2019a). No specific research method was consistently used within a particular research theme.

Characteristics of participants in qualitative research

Sample participants were most often selected on the basis of their diagnoses with a specific dermatologic condition (93 of 134, 69.4%). Occupation (40 of 134, 29.9%) was also a common criterion for selection, as in “Understanding roofers' sun protection behavior: a qualitative study” (Ziehfreund et al., 2019). Participant type was most frequently patients (99 of 134, 73.9%), followed by healthcare providers (43 of 134, 30.6%), caregivers (29 of 134, 21.6%), and the general public (11 of 134, 8.2%), as in the study “Compensation behaviors and skin cancer prevention,” which involved interviewing beach goers.

Dermatologic conditions and themes in qualitative research

Most manuscripts related to medical dermatology (133 of 134, 99.3%), with 23.1% (31 of 134) including pediatric dermatology (categories nonexclusive). Just 2.2% (3 of 134) focused on surgical dermatology, and no manuscripts specifically concerned cosmetic dermatology. The dermatologic conditions studied with qualitative methods are detailed in Figure 2.

Figure 2.

Frequency of dermatologic conditions studied in included manuscripts. Autoimmune conditions included systemic sclerosis, vitiligo, alopecia areata, juvenile dermatomyositis, pemphigus, lichen sclerosus, and cutaneous lupus erythematosus. Genetic conditions included albinism, epidermolysis bullosa, and erythropoietic protoporphyria. Other conditions included hidradenitis suppurativa, mycosis fungiodes, actinic keratosis, cutaneous T-cell lymphoma, chronic urticaria, contact dermatitis, chronic severe skin disorder, treatment-induced cutaneous toxicities, and a diagnosed skin disease.

Major research themes of qualitative research in dermatology are shown in Figure 3. Two thirds (92 of 134, 68.7%) of manuscripts described the patient experience of a dermatologic condition, as in “Factors affecting quality of life for people living with albinism in Botswana” (Anshelevich et al., 2021). Only one manuscript, “Racial differences in perceptions of psoriasis therapies: Implications for racial disparities in psoriasis treatment,” examined healthcare disparities as the specific research theme. Many (60 of 134, 44.8%) used qualitative methods for the development of a patient-reported outcome measure (PROM). A total of 36 (36 of 134, 26.9%) manuscripts described attitudes about treatment or unmet care needs, for instance, exploring patients’ motivations for use of Chinese medicine to treat psoriasis and urticaria or understanding barriers to sun protective measures among farmers (Coyle et al., 2020; Zink et al., 2019). A total of 26 (26 of 134, 19.4%) manuscripts discussed provider attitudes or beliefs, as in “The role of personal models in clinical management: Exploring health care providers' beliefs about psoriasis.” A total of 15 (15 of 134, 11.2%) papers described the parent or caregiver experience, as in the study “Focus group parental opinions regarding treatment with topical corticosteroids on children with atopic dermatitis” (Veenje et al., 2019). A total of 20 (20 of 134, 14.9%) papers described the public’s health behaviors or attitudes, as in “Knowledge and attitudes of UK university students in relation to ultraviolet radiation (UVR) exposure and their sun-related behaviors: a qualitative study” (Kirk and Greenfield, 2017).

Figure 3.

The frequency of research themes present in included manuscripts. PROM, patient-reported outcome measure.

Adherence to quality measures

For most included studies (132 of 134, 98.5%), at least one quality criterion selected from the SRQR was met. However, few original studies (8 of 127, 6.3%) met all quality criteria, whereas six of seven systematic reviews (85.7%) met all quality criteria. Similarly, a minority referenced quality reporting standards (28 of 134, 20.9%) such as the SRQR or COREQ. Of studies that met all the quality criteria, five were published in dermatology journals, and nine were published in nondermatology journals. A breakdown of specific quality criteria is shown in Table 1.

Discussion

The results of this scoping review characterize how qualitative methodologies are being used in dermatology and how well this research adheres to standards set forth for qualitative research. We found a substantial body of work using qualitative methods for the investigation of dermatologic conditions predominantly focused on patients with inflammatory skin disorders and cancer and their lived experiences; however, some key topics of interest to dermatologists were poorly represented, and much of the published qualitative work was outside the dermatology literature. These results underscore opportunities for increased utilization of qualitative work in dermatology and uptake in the dermatology literature.

As expected, many manuscripts focused on common dermatologic conditions, including psoriasis, eczema, and skin cancer. Nevertheless, more than half were concerned with uncommon conditions, including epidermolysis bullosa, xeroderma pigmentosa, and systemic sclerosis. This highlights the important role of qualitative methodologies in characterizing populations that may be hard to reach or lack visibility. Given the abundance of orphan and rare dermatologic conditions, qualitative methodologies are an appropriate tool when robust quantitative data sampling and probabilistic sampling methods may not be possible (Murphy and Dingwall, 2003).

Most manuscripts focused on content relevant to medical dermatology and, to a lesser extent, pediatric conditions, which included examination of the experiences of caregivers. On the other hand, just three manuscripts related to surgical dermatology, for instance, examining the perspective of patients undergoing facial skin cancer surgery to define and investigate concerns about aesthetics, procedures, and health (Lee et al., 2016). Similarly, we did not find manuscripts that were specifically concerned with cosmetic dermatology, a field that may benefit from qualitative methodologies, because patient satisfaction and aesthetic concerns are primary contributors to treatment success (Mori and Lee, 2019).

In addition to the limited representation of dermatologic subspecialties, we found few manuscripts that examined health disparities or the lived experience of patients with skin of color. Just three studies specifically named ethnicity or minority status as a defining criterion for participant selection (Gilhooley et al., 2019; Rodríguez et al., 2017; Zink et al., 2019) (although a few manuscripts focused on the experience of patients in a particular country), and only one study identified health disparities as a primary research theme (Takeshita et al., 2019). Because patients of different racial and ethnic groups may have different experiences of disease (Institute of Medicine (US) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care, 2003), qualitative studies can help to describe these diverse experiences and adapt healthcare delivery to culturally appropriate contexts (Nápoles-Springer and Stewart, 2006). Qualitative work using purposive sampling of patients with Medicaid/Medicare or without insurance might also help researchers to better understand and address ongoing causes of healthcare disparities in dermatology.

Only two papers used qualitative methodologies in service of developing educational materials, both for healthcare providers rather than patients. The sources patients utilize for information about their health vary widely in content, readability, and accuracy. Qualitative methodologies could provide a tool to understand the informational needs of dermatology patients and thereby improve educational materials.

The journal type in which qualitative research is published impacts the visibility and uptake of findings. Although the BJD published the largest percentile of qualitative work among dermatology journals (Nelson and Thompson, 2015), the number of manuscripts in American journals of similar impact factors was lower, and many manuscripts were published outside of dermatology journals. This may be the result of the types of researchers performing qualitative research (Pope and Mays, 2009), given that many manuscripts in our study were performed by multidisciplinary teams or by nondermatologists. It may also indicate that qualitative research is underrepresented in dermatology journals. We lack data to determine the factors contributing to these trends in publication; nevertheless, underrepresentation in dermatology journals is likely to influence the familiarity of dermatologists with this type of research. Dermatologists should also be aware that on the basis of the findings of this study, qualitative data relevant to their conditions and populations of interest are being published outside dermatology journals.

The studies we considered to be higher quality met most or all the criteria from the SRQR. Most studies explained their method of analysis and sampling strategy and included empirical data. However, quality standards for qualitative research were explicitly referenced in a minority of studies, and interestingly, of those, only half (14 of 28) met all of the specific quality standards they referenced (Pope and Mays, 2009). These results indicate that journals may improve the quality of published work by insisting that authors adhere to strict guidelines for the reporting of qualitative work.

Limitations

Because our search criteria required that manuscripts be published in English, results may underrepresent research from non-English speaking countries conducting qualitative research in a non-English language. Results are limited to the last 5 years, which limits the scope of analysis. Furthermore, by excluding certain diagnoses (e.g., wound care, psoriatic arthritis), we may have excluded some papers that included relevant data on dermatologic conditions. Utilizing an adjacency search to increase the relevance of results may have led to missing relevant manuscripts.

Conclusions

In this review, we discovered that qualitative methods are being used in dermatologic research to understand how patients and caregivers experience diseases as well as how providers approach the care of specific conditions. Within recent qualitative work, interdisciplinary collaborations have been frequent. Future directions for qualitative research in dermatology include rigorous adherence to quality standards, the application of qualitative methodologies to the development of patient educational materials, explicitly exploring how underrepresented groups experience diseases as well as how health disparities affect experiences within these groups, and increasing the scope of surgical and cosmetic qualitative dermatology research.

Materials and Methods

Research question and registration

This review was guided by the following question: how are qualitative methodologies being utilized for research in dermatology? More specifically, we aimed to describe the authors, types of publications, research themes, participant types, methodologies, and adherence to quality standards. The review was performed following the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping reviews (Tricco et al., 2018).

Inclusion criteria

Peer-reviewed journal papers were eligible for inclusion if they were published between January 1, 2016 and September 22, 2021; were available in English; and described the utilization of specific qualitative methods for the investigation of a dermatologic research question. This included primary dermatologic diagnoses (e.g., psoriasis, atopic dermatitis, skin cancer), conditions with prominent dermatologic manifestations (e.g., albinism, xeroderma pigmentosum, cutaneous toxicities of oncologic drugs), and topics of interest to dermatologists (e.g., UV protective knowledge, tanning behaviors). All author and journal types were included. Mixed-method studies and systematic reviews were eligible.

Systematic literature search

A research librarian (AH) and author (NMT) generated the search string. A search strategy that employed a combination of index terms and relevant text words to find records containing terms and phrases pertaining to both qualitative research and skin/dermatology was constructed. An adjacency search set was used to filter results to identify records for phrases pertaining to the utilization of qualitative methodologies and any variation of the term qualitative in the titles of the manuscripts. This search was performed on Ovid MEDLINE on September 22, 2021, and results were limited to English language records, with entry dates going back to January 1, 2016. The search string was tailored to the specific requirements of the database (Table 2). All references were imported into Covidence (Veritas Health Innovation, Melbourne, Australia), a web-based systematic review software program. Titles and abstracts were screened for relevance by one reviewer (JF) and verified for accuracy by a second reviewer (NMT). Subsequently, all full texts were reviewed for inclusion by two reviewers (JF and NMT). Discrepancies were resolved by consensus or a third-party reviewer when necessary (CKZ or HJ).

Table 2.

Search String

Number	Search String
1	exp qualitative research/
2	2 exp "Surveys and Questionnaires"/
3	3 exp Focus Groups/
4	exp Interview/
5	1 or 2 or 3 or 4
6	exp Integumentary System/
7	exp Skin Diseases/
8	exp Integumentary System Physiological Phenomena/
9	exp Dermatology/
10	6 or 7 or 8 or 9
11	5 and 10
12	exp breast cancer/
13	11 not 12
14	“surveys and questionnaires”/ or exp health care surveys/ or health surveys/ or exp nutrition surveys/ or exp patient health questionnaire/ or exp self report/
15	1 or 3 or 4 or 14
16	10 and 15
17	16 not 12
18	limit 17 to English language
19	limit 18 to yr”2016-Current”
20	limit 19 to (systematic reviews pre 2019 or systematic reviews)
21	limit 19 to (adaptive clinical trial or controlled clinical trial or pragmatic clinical trial or randomized control trial)
22	exp Epidemiologic Studies/
23	exp “Outcome and Process Assessment, Health Care”/
24	exp Prognosis/
25	22 or 23 or 24
26	19 and 25
27	limit 19 to (comparative study or evaluation study or validation study)
28	26 or 27
29	21 not 20
30	28 not (20 or 21)
31	19 not (20 or 21 or 28)
32	([collect∗ or obtain∗ or utilize∗ or employ∗ or “use” or using or uses or used or method∗ or technique∗] adj5 qualitativ∗).mp.
33	18 and 32
34	1 and 18
35	33 or 34
36	qualitativ∗.ti.
37	18 and 36
38	35 or 37

Data extraction and analysis

Data were extracted using Covidence software by two reviewers (JF and NMT). Data from eligible studies were reported using a standardized abstraction tool designed for this study (Table 3) to capture information relevant to the primary research question. This included author characteristics, the methodology utilized, participant number and characteristics, research themes, and the presence of quality criteria as outlined by SRQR (O'Brien et al., 2014). Research themes were coded into seven main categories: development or validation of a PROM, description of patient experience, description of provider experience, attitudes/preferences about treatment (including care delivery or unmet needs), development or assessment of educational/informational materials, description of parent/caregiver experience, and description of the public's health behaviors/attitudes. These themes were able to categorize all included manuscripts. Manuscripts were coded into more than one category where appropriate (for instance, including both pediatric and adult patients or encompassing multiple research themes).

Table 3.

Coding Document

Citation Information
Covidence
Author list
Title
Year
Journal
Volume/issue/pages
DOI
Country
General study information
Type of study (choose all that apply)
	Systematic review/meta-analysis
	Other studies
	Commentary
	Other: ___________________
Was research question or objective clearly stated?
	Yes
	No
Total sample size (numeric) for qualitative methodology
Other identifying patient characteristics that determined inclusion
	Gender
	Ethnicity
	Occupation
	Other
Age of population of interest
	Children
	Adults
	Specify age range, if reported
Type of qualitative methodology utilized in study (choose all that apply)
	Focus groups
	Interviews
	Textual analysis
	Open-ended survey data
	Mixed methodologies
	Other
Condition of interest
	Psoriasis
	Atopic dermatitis
	Eczema
	Skin cancer
	Acne/rosacea
	Others: ___________________
Dermatology subspecialty (choose all that apply)
	Medical
	Surgical
	Cosmetic
	Pediatric
Information on application of qualitative methodology
Concept of interest – as described by authors (categorical)- choose all that apply
	Development or validation of patient reported outcome measure (PRO)
	Description of patient experience (e.g. HRQoL, impact on functioning, psychosocial/emotion impact, etc.- includes patient understanding of disease)
	Description of provider experience
	Attitudes/preferences about treatment or care delivery, unmet needs (includes treatment satisfaction, impact, compliance, barriers to care)
	Development or assessment of educational/informational materials
	Description of parent/caregiver experience
	Description of the public's health behaviors/attitudes
	Other : ________
Indicated as primary outcome? (categorical)
	Yes
	No
Data source
	Patient
	Caregiver
	Clinician/provider
	Trainees
	Public
	Other:_____
Quality Assessment
ANY justification information cited for choice of this methodology in intro/methods?
	a. Yes
	b. No
Is there a discussion of the qualitative approach and research paradigm?
	a. Yes
	b. No
Is the sampling strategy justified?
	a. Yes
	b. No
Data analysis strategy explained/justified?
	a. Yes
	b. No
Are there links to empirical data?
	a. Yes
	b. No
Does the article reference any standards for reporting qualitative research?
	a. Yes
	b. No

Abbreviations: HRQoL, Health-Related Quality of life; PROM, patient-reported outcome measure.

Quality assessment

The quality of included studies was appraised using key criteria from the SRQR, including the following:

• •Is there a discussion of the qualitative approach and theoretical research paradigm?
• •Is the sampling strategy justified?
• •Is the data analysis strategy (or process by which inferences, themes, etc. were identified and developed, including the researchers involved in data analysis) explained or justified?
• •Are empirical data included?
• •Does the manuscript reference formal SRQR?

Analysis

Two reviewers (NMT and JF) performed calibration for the data-charting form using five full-text manuscripts extracted for analysis. Changes after calibration included the addition of author affiliation type to the coding form. After calibration, one reviewer (JF) coded data from each eligible manuscript, and coding was verified by a second reviewer (NMT). The key changes to the form after coding included the addition of the public as a participant type and the inclusion of research themes, including a description of a parent/caregiver experience and a description of the public's health behaviors/attitudes. Disagreements during coding were resolved through discussion between reviewers. Data were synthesized on the basis of the central research questions.

Data availability statement

No large datasets were generated in the preparation of this manuscript.

ORCIDs

Jenny Foster: http://orcid.org/0000-0002-7166-5793

Noelle M. Teske: http://orcid.org/0000-0002-8004-8615

Christina K. Zigler: http://orcid.org/0000-0002-8996-7757

Andrew Hamilton: http://orcid.org/0000-0001-5634-7503

Heidi Jacobe: http://orcid.org/0000-0001-5205-990X

Conflict of Interest

The authors state no conflict of interest.

accepted manuscript published online XXX; corrected proof published online XXX