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Current utilization of qualitative methodologies in dermatology: a scoping review

Open AccessPublished:November 17, 2022DOI:https://doi.org/10.1016/j.xjidi.2022.100172

      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 was conducted of manuscripts published in English between January 1, 2016, and September 22, 2021. A coding document was developed to collect information on authors, methodology, participants, research theme, and presence of quality criteria as outlined by the Standards for Reporting Qualitative Research (SRQR)(O'Brien et al.). 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 inclusion criteria. Most studies utilized interviews or focus groups, and researchers predominantly selected participants based on 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. While 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 towards 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 J. Qualitative Methods for Health Research Ed. 4. SAGE Publications 2018; 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 NK, Lincoln YS. Introduction: The discipline and practice of qualitative research. Strategies of qualitative inquiry, 3rd ed. Thousand Oaks, CA, US: Sage Publications, Inc; 2008. p. 1-43.

      ,

      Green J. Qualitative Methods for Health Research Ed. 4. SAGE Publications 2018; 2018.

      ). Like quantitative methods, qualitative methods must adhere to firm research standards. Consolidated criteria for reporting qualitative research, including the (COREQ), developed in 2007 (
      • Tong A.
      • Sainsbury P.
      • Craig J.
      Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.
      ), and the Standards for Reporting Qualitative Research (SRQR), developed in 2014 (O'Brien et al.), provide recommendations for conduct of 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 N.
      • Pope C.
      Introduction.
      ).
      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 P.A.
      Getting under the skin: qualitative methods in dermatology research.
      ,
      • Nelson P.A.
      Exploring new worlds: expanding the reach of qualitative research in dermatology.
      ) 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 JM. Applying qualitative research in dermatology: understanding lived experience. Br J Dermatol 2017;177(3):617-618.

      ).
      Despite their potential, little is known about the uptake of these qualitative methodologies and 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.

      Methods

      Research Question and Registration

      This review was guided by the 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 (PRISMA) extension for scoping reviews (
      • Tricco A.C.
      • Lillie E.
      • Zarin W.
      • O'Brien K.K.
      • Colquhoun H.
      • Levac D.
      • et al.
      PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation.
      ).

      Inclusion Criteria

      Peer-reviewed journal papers were eligible for inclusion if they were: published between January 1st, 2016, and September 22nd, 2021, 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., ultraviolet 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 (NT) 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 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 specific requirements of the database (Table 1). 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 (NT). Subsequently, all full texts were reviewed for inclusion by 2 reviewers (JF, NT). Discrepancies were resolved by consensus or a third-party reviewer when necessary (CZ or HJ).
      Table 1.
      Table thumbnail fx1

      Data Extraction and Analysis

      Data were extracted using Covidence software by 2 reviewers (JF and NT). Data from eligible studies were reported using a standardized abstraction tool designed for this study (Table 2) to capture information relevant to the primary research question. This included: author characteristics, methodology utilized, participant number and characteristics, research themes, and presence of quality criteria as outlined by SRQR (O'Brien et al.). Research themes were coded into seven main categories: development or validation of a patient-reported outcome measure (PRO); 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 2.
      Table thumbnail fx2

      Quality Assessment

      The quality of included studies was appraised using key criteria from the SRQR including:
      • 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?
      • Is empirical data included?
      • Does the manuscript reference formal standards for reporting qualitative research?

      Analysis

      Two reviewers (NT and JF) performed calibration for the data-charting form using 5 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 (NT). Key changes to the form after coding included the addition of ‘the public’ as a participant type and inclusion of research themes including ‘description of a parent/caregiver experience’ and ‘description of the public's health behaviors/attitudes.’ Disagreements during coding were resolved through discussion between reviewers. Data was synthesized based on the central research questions.

      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 thumbnail gr1
      Fig. 1Study flow diagram. Adapted from: Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ 2021;372:n71. doi: 10.1136/bmj.n71
      Characteristics of included studies are reported in Table 3. Of these studies, 127 represented original work and 7 were systematic reviews (

      Ablett K, Thompson AR. Parental, child, and adolescent experience of chronic skin conditions: A meta-ethnography and review of the qualitative literature. Body image 2016;19(101222431):175-185.

      ,

      Barisone M, Bagnasco A, Hayter M, Rossi S, Aleo G, Zanini M, et al. Dermatological diseases, sexuality and intimate relationships: A qualitative meta-synthesis. Journal of clinical nursing 2020;29(17-18):3136-3153.

      ,

      Ip A, Muller I, Geraghty AWA, Platt D, Little P, Santer M. Views and experiences of people with acne vulgaris and healthcare professionals about treatments: systematic review and thematic synthesis of qualitative research. BMJ open 2021;11(2):e041794.

      ,
      • Nakayama A.
      • Tunnicliffe D.J.
      • Thakkar V.
      • Singh-Grewal D.
      • O'Neill S.
      • Craig J.C.
      • et al.
      Patients' Perspectives and Experiences Living with Systemic Sclerosis: A Systematic Review and Thematic Synthesis of Qualitative Studies.
      ,
      • Singh S.
      • Ehsani-Chimeh N.
      • Kornmehl H.
      • Armstrong A.W.
      Quality of life among dermatology patients: a systematic review of investigations using qualitative methods. Giornale italiano di dermatologia e venereologia : organo ufficiale.
      ,
      • Sumpton D.
      • Kelly A.
      • Tunnicliffe D.J.
      • Craig J.C.
      • Hassett G.
      • Chessman D.
      • et al.
      Patients' Perspectives and Experience of Psoriasis and Psoriatic Arthritis: A Systematic Review and Thematic Synthesis of Qualitative Studies.
      ,
      • Teasdale E.
      • Muller I.
      • Sivyer K.
      • Ghio D.
      • Greenwell K.
      • Wilczynska S.
      • et al.
      Views and experiences of managing eczema: systematic review and thematic synthesis of qualitative studies.
      ). Studies occurred in 23 countries with the majority conducted in the UK and US (49/134, 36.6% and 43/134, 32.1% respectively). The BJD published the largest percentage of included manuscripts, (27/134, 20.1%) followed by the British Medical Journal (BMJ) Open (15/134, 11.2%). Seventy manuscripts (70/134, 52.2%) included dermatologists as an author and most manuscripts were conducted in collaborative effort between dermatologists or other healthcare professionals and social scientists. A minority of studies (15/70, 21.4%) were conducted exclusively by dermatology (Table 3).
      Table 3.
      Sample Size:Median (Interquartile range)
      Original study (n = 127)27 (20 -52)
      Systematic Reviews (n =7)463 (210 – 1007)
      Methods:Number (%)
      Focus group37 (27.6)
      Interview104 (77.6)
      Semi-structured82 (61.2)
      Unstructured5 (3.7)
      Structured4 (3.0)
      Textual analysis18 (13.4)
      Open ended survey12 (9.0)
      Mixed methods20 (14.9)
      Other methods14 (10.4)
      Observations7 (5.2)
      Author Affiliations: (n = 134*)Number (%)
      Dermatology70 (52.2)
      Psychology46 (34.3)
      Public Health16 (11.9)
      Sociology14 (10.4)
      Other medical83 (61.9)
      Allergy4 (3.0)
      Primary care22 (14.2)
      Rheumatology15 (11.2)
      Nursing16 (11.9)
      Psychiatry6 (4.5)
      Pediatrics9 (6.7)
      Other field29 (21.6)
      Epidemiology6 (4.5)
      CriteriaYes (%)No (%)
      References formal standards for reporting qualitative research28 (21.1)105 (78.9)
      Justifies sampling strategy99 (78.6)27 (21.4)
      Justifies data analysis strategy125 (94.0)8 (6.0)
      Includes empirical data115 (86.5)18 (13.5)
      Discusses theoretical framework or paradigm30 (23.8)96 (76.2)
      Meets any criteria131 (98.5)2 (1.5)
      Meets all criteria
      Original Studies8 (6.3)118 (93.7)
      Systematic Reviews6 (85.7)1 (14.3)
      *For 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 (104/134, 77.6%) or focus groups (37/134, 27.6%) (Table 3). Of eighteen studies (18/134, 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 GL, Manley K, Halawa S, Biddle L. Conversations between women with vulval lichen sclerosus: a thematic analysis of online forums. BMC women's health 2021;21(1):71.

      ). 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 F. Knowledge mobilisation: an ethnographic study of the influence of practitioner mindlines on atopic eczema self-management in primary care in the UK. BMJ open 2019a;9(7):e025220.

      ). No specific research method was consistently used within a particular research theme.

      Characteristics of participants in qualitative research

      Sample participants were most often selected based on their diagnosis with a specific dermatologic condition (93/134, 69.4%). Occupation (40/134, 29.9%) was also a common criterion for selection, as in, “Understanding roofers' sun protection behaviour: a qualitative study”(
      • Ziehfreund S.
      • Schuster B.
      • Biedermann T.
      • Zink A.
      Understanding roofers' sun protection behaviour: a qualitative study.
      ). Participant type was most frequently patients (99/134, 73.9%), followed by healthcare providers (43/134, 30.6%), caregivers (29/134, 21.6%), and the general public (11/134, 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 (133/134, 99.3%) with 23.1% (31/134) including pediatric dermatology (categories non-exclusive). Just 2.2% (3/134) focused on surgical dermatology, and no manuscripts specifically concerned cosmetic dermatology. Dermatologic conditions studied with qualitative methods are detailed in Figure 2.
      Figure thumbnail gr2
      Fig. 2Frequency 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 (92/134, 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 EE, Mosojane KI, Kenosi L, Nkomazana O, Williams VL. Factors Affecting Quality of Life for People Living with Albinism in Botswana. Dermatologic clinics 2021;39(1):129-145.

      ). 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 (60/134, 44.8%) used qualitative methods for development of a PRO. Thirty-six (36/134, 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 ME, Yu JJ, Zhang AL, Jones L, Xue CC, Lu C. Patient experiences of using Chinese herbal medicine for psoriasis vulgaris and chronic urticaria: a qualitative study. The Journal of dermatological treatment 2020;31(4):352-358.

      ,
      • Zink A.
      • Schielein M.
      • Wildner M.
      • Rehfuess E.A.
      Try to make good hay in the shade - it won't work!' A qualitative interview study on the perspectives of Bavarian farmers regarding primary prevention of skin cancer.
      ). Twenty-six manuscripts discussed provider attitude or beliefs (26/134, 19.4%), as in, “The role of personal models in clinical management: Exploring health care providers' beliefs about psoriasis.” Fifteen (15/134, 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 S.
      • Osinga H.
      • Antonescu I.
      • Bos B.
      • de Vries T.W.
      Focus group parental opinions regarding treatment with topical corticosteroids on children with atopic dermatitis.
      ). Twenty (20/134, 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 behaviours: a qualitative study”(
      • Kirk L.
      • Greenfield S.
      Knowledge and attitudes of UK university students in relation to ultraviolet radiation (UVR) exposure and their sun-related behaviours: a qualitative study.
      ).
      Figure thumbnail gr3
      Fig. 3Frequency of research themes present in included manuscripts.

      Adherence to Quality Measures

      For most included studies, at least one quality criteria selected from the SRQR was met (132/134, 98.5%). However, few original studies (8/127, 6.3%) met all quality criteria, while 6 of 7 systematic reviews (85.7%) met all quality criteria. Similarly, a minority referenced quality reporting standards (28/134, 20.9%) such as the SRQR or COREQ. Of studies that met all the quality criteria, 5 were published in dermatology journals and 9 in non-dermatology journals. A breakdown of specific quality criteria is shown inTable 3.

      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 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 concerned uncommon conditions, including epidermolysis bullosa, xeroderma pigmentosa, and systemic sclerosis. This highlights an important role for 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 E, Dingwall R. Qualitative methods and health policy research: Aldine de Gruyter, 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 investigate concerns about aesthetics, procedures and health (
      • Lee E.H.
      • Klassen A.F.
      • Lawson J.L.
      • Cano S.J.
      • Scott A.M.
      • Pusic A.L.
      Patient experiences and outcomes following facial skin cancer surgery: A qualitative study.
      ). Similarly we did not find manuscripts that specifically concerned cosmetic dermatology, a field that may benefit from qualitative methodologies, as patient satisfaction and aesthetic concerns are primary contributors to treatment success (
      • Mori S.
      • Lee E.H.
      Beyond the physician's perspective: A review of patient-reported outcomes in dermatologic surgery and cosmetic dermatology.
      ).
      In addition to 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 criteria for participant selection (

      Gilhooley E, Daly S, Gallagher O, Glacken M, McKenna D. Experience of skin disease and relationships with healthcare providers: a qualitative study of Traveller women in Ireland. The British journal of dermatology 2019;180(6):1405-1411.

      ,
      • Rodriguez V.M.
      • Shuk E.
      • Arniella G.
      • Gonzalez C.J.
      • Gany F.
      • Hamilton J.G.
      • et al.
      A Qualitative Exploration of Latinos' Perceptions About Skin Cancer: the Role of Gender and Linguistic Acculturation.
      ,
      • Zink A.
      • Schielein M.
      • Wildner M.
      • Rehfuess E.A.
      Try to make good hay in the shade - it won't work!' A qualitative interview study on the perspectives of Bavarian farmers regarding primary prevention of skin cancer.
      ) (though 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 J, Eriksen WT, Raziano VT, Bocage C, Hur L, Shah RV, et al. Racial Differences in Perceptions of Psoriasis Therapies: Implications for Racial Disparities in Psoriasis Treatment. The Journal of investigative dermatology 2019;139(8):1672-9.e1.

      ). As patients of different racial and ethnic groups may have different experiences of disease (Institute of Medicine Committee on et al., 2003), qualitative studies can help describe these diverse experiences and adapt healthcare delivery to culturally appropriate contexts (
      • Nápoles-Springer A.M.
      • Stewart A.L.
      Overview of Qualitative Methods in Research With Diverse Populations: Making Research Reflect the Population.
      ). 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 informational needs of dermatology patients and thereby improve educational materials.
      The journal type in which qualitative research is published impacts visibility and uptake of findings. While the BJD published the largest percentile of qualitative work among dermatology journals (
      • Nelson P.A.
      • Thompson A.R.
      Judging quality in qualitative dermatology research: the science and the ‘art.
      ), the number of manuscripts in American journals of similar impact factor was lower, and many manuscripts were published outside of dermatology journals. This may be the result of the types of researchers performing qualitative research (2010,
      • Pope C.
      • Mays N.
      Critical reflections on the rise of qualitative research.
      ), given many manuscripts in our study were performed by multidisciplinary teams or by non-dermatologists. It may also indicate that qualitative research is underrepresented in dermatology journals. We lack data to determine factors contributing to these trends in publication; nevertheless, underrepresentation in dermatology journals is likely to influence familiarity of dermatologists with this type of research. Dermatologists should also be aware that, based on findings of this study, qualitative data relevant to their conditions and populations of interest is being published outside dermatology journals.
      Studies we considered to be higher quality met most or all the criteria from the SRQR. Most studies explained their method of analysis, 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 (14/28) met all of the specific quality standards they referenced (2010,
      • Pope C.
      • Mays N.
      Critical reflections on the rise of qualitative research.
      ). These results indicate that journals may improve quality of published work by insisting authors adhere to strict guidelines for the reporting of qualitative work.

      Limitations

      As 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 five years, which limits the scope of analysis. Further, 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 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 disease, 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 development of patient educational materials, explicitly exploring how underrepresented groups experience disease, as well as how health disparities affect experiences within these groups, and increasing the scope of surgical and cosmetic qualitative dermatology research.

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