Comparison of appearance dissatisfaction and appearance-related social discomfort among people with systemic sclerosis and burn injury

Abstract

Introduction/Objective:

Visible differences from medical conditions and injuries are associated with body image concerns, particularly among females and young adults. We compared dissatisfaction with appearance and social discomfort between people with systemic sclerosis and burn injury, since the extent and implications of appearance changes are well-established in burn injury.

Methods:

We searched PubMed, PsycInfo, EMBASE, and CINAHL to 8 December 2024 for studies that used the Satisfaction with Appearance Scale among adults with burn injury or systemic sclerosis. We emailed study authors and requested Satisfaction with Appearance Scale Dissatisfaction with Appearance and Social Discomfort subscale means and standard deviations for subgroups defined by sex (female, male) and age (18–44 years, 45–64 years, ⩾ 65 years). For each subgroup, we conducted a random-effects meta-analysis to estimate the difference between mean scores for people with burn injury and systemic sclerosis.

Results:

We identified 17 eligible studies from nine unique cohorts. We obtained subgroup results from two of three eligible burn cohorts (2658 participants, 98% of total eligible) and five of six eligible systemic sclerosis cohorts (3402 participants, 99% of total eligible participants). Dissatisfaction with Appearance subscale scores were higher among people with systemic sclerosis compared to burn injury by 2.2 to 5.7 points (standardized mean difference = 0.20 to 0.53) for females and males across all age groups (p < 0.05 for males aged 18–44 and 45–64 years). For social discomfort, differences were close to zero (standardized mean difference < 0.10) for females aged 18–44 and 45–64 years. For females aged ⩾ 65 years and all male age groups, scores were higher in systemic sclerosis than burn injury (standardized mean difference = 0.22 to 0.45), although none were statistically significant.

Conclusion:

Dissatisfaction with appearance and social discomfort appear to be similar or greater among people with systemic sclerosis compared to people who have been hospitalized with a burn injury.

Keywords

Body image burn injury dissatisfaction with appearance social discomfort systemic sclerosis visible differences

Introduction

Visible differences due to medical conditions and injuries are associated with poor body image esteem and diminished mental health.^1–4 Across populations, greater extent, severity, and visibility of appearance changes are associated with more negative psychological outcomes.^5–11 Among adults with visible differences from illness or injury and in the general population, female sex and younger age are also associated with greater appearance-related concerns.^12–15

Scleroderma (SSc, systemic sclerosis) is a chronic autoimmune disease involving microvascular damage and fibrosis of the skin and other organs, including the lungs, gastrointestinal tract, kidneys, and heart.^16,17 Many people with SSc experience visible appearance changes, including skin discoloration and tightening, particularly around the mouth area; changes to facial features; telangiectasias; sclerodactyly; and discoloration in the hands due to Raynaud’s phenomenon.^18,19 Similar to other conditions, body image dissatisfaction and the negative social impact of visible appearance changes are most prominent among females and younger adults.^5,20

Body image concerns, however, are less studied in SSc compared to other disfiguring conditions, such as burn injury, where there is more extensive evidence on the extent and implications of visible appearance changes.^1,4,8 The 14-item Satisfaction with Appearance (SWAP) Scale,²¹ which generates separate scores for Dissatisfaction with Appearance and Social Discomfort subscales, is commonly used in studies of adults with SSc and burn injury.^22,23 Our objective was to compare SWAP Dissatisfaction with Appearance and Social Discomfort subscale scores between people with burn injury and SSc, accounting for differences in sex and age.

Methods

We used a systematic search to identify studies that used the SWAP in burn injury or SSc and contacted authors to request Dissatisfaction with Appearance and Social Discomfort subscale means and standard deviations for subgroups delineated by sex and age.

Identification of eligible studies, search strategy, study selection, and data acquisition

We sought studies on adults with burn injury or SSc that published SWAP scores and could potentially provide SWAP Dissatisfaction with Appearance and Social Discomfort subscale mean scores and standard deviations for subgroups defined by sex (female, male) and age (18–44 years, 45–64 years, 65 years or older).²⁴ Thus, we searched for studies that published results among adults with burn injury or SSc with any version of the SWAP (full 14-item version,²¹ 6-item Brief-SWAP,²⁵ 15-item Adapted SWAP)²⁶ so that we could request data. We included only studies from North America or Europe to enhance comparability across studies since most data in burn injury and SSc have been collected in North American and Europe. We excluded studies of mental health interventions related to body image and studies of people receiving specialized services, such as burn reconstruction, as these typically select participants with pre-existing body image concerns. We excluded case studies and conference abstracts for which no full-text publications were available.

We searched the PubMed, APA PsycInfo (Ovid), EMBASE (Ovid), and CINAHL (EBSCOhost) databases for relevant articles since the inception of each database using the term “Satisfaction with Appearance Scale.” We conducted an initial search and an additional search prior to finalizing results to ensure that no eligible studies had been published since the initial search. Search results were uploaded into the systematic review software DistillerSR (Evidence Partners, Ottawa, Canada), where duplicate references were identified and removed. Two independent investigators reviewed titles and abstracts for eligibility. If either reviewer decided that a study was potentially eligible, it underwent full-text review, where it was independently assessed for eligibility by two reviewers. Any discrepancy at the full-text level was resolved through consensus, and a third investigator was consulted if needed.

We contacted corresponding authors of studies with SWAP data to request Dissatisfaction with Appearance and Social Discomfort subscale mean scores and standard deviations for our pre-defined sex- (female, male) and age-based (18–44 years, 45–64 years, ⩾ 65 years) subgroups. Each author was contacted three times, with a minimum 1 week between each attempted contact. If the author did not respond, we attempted to contact co-authors. When there were multiple publications from the same cohort, we prioritized data from the largest sample. If authors with ongoing studies had accumulated larger datasets than those included in their publications, we used results from the updated, larger dataset that they provided. For studies with SWAP scores at multiple time points, we included only the earliest time point.

Satisfaction with appearance scale

The 14-item SWAP was originally designed to measure non-weight-related body image concerns among individuals with burn injuries.²¹ Items pertain to dissatisfaction with the appearance of particular body parts (Dissatisfaction with Appearance subscale) and social discomfort relative to disfigurement (Social Discomfort subscale). Respondents rate the degree to which they feel each item reflects their thoughts and feelings about their appearance on a 7-point scale ranging from 1 (strongly disagree) to 7 (strongly agree). Item scores are summed to calculate total subscale scores, reverse-scoring items pertaining to satisfaction with appearance. Total subscale scores range from 8 to 56 on the Dissatisfaction with Appearance subscale (eight items) and 6 to 42 on the Social Discomfort (six items) subscale. Higher scores indicate greater Social Discomfort and Dissatisfaction with Appearance.²¹ The original SWAP was adapted for SSc by replacing the word “burn” with the word “scleroderma,” as indicated,²⁶ and has been shown to have good reliability and validity in SSc.^22,25,27

Data extraction

For each included study, one reviewer extracted data from articles using a pre-specified standardized form, and a second reviewer validated the extracted data using the DistillerSR Quality Control function. Any discrepancies were resolved by consensus between the two reviewers, involving a third reviewer if necessary. For each included study, we extracted first author last name, publication year, journal, country, dates of data collection, study design, eligibility criteria, sample size, proportion of females, time since burn injury or SSc onset or diagnosis, and burn injury severity or SSc disease subtype (diffuse, limited, sine).

Statistical analysis

For each subgroup by sex and age, we conducted a random-effects meta-analysis of means to determine the pooled mean SWAP scores for burn injury or SSc and to estimate the difference between mean scores for people with burn injury or SSc. To do this, we used the meta-mean command within R’s meta-package, which uses an inverse-variance meta-analysis to pool the data. To assess heterogeneity, we calculated I². We generated forest plots of mean SWAP subscale scores and associated 95% confidence intervals for all burn injury and SSc studies and for the difference. The forest plot was created using the ggplot2 package in R (R version 3.6.3, RStudio Version 1.2.5042).

We referred to commonly used, rough guidelines for interpreting the magnitude of score differences between burn injury and SSc: standardized mean difference (SMD) = 0.20 is small, 0.50 is medium, and 0.80 is large.²⁸

Results

Search results

We conducted initial database searches on 10 March 2024 and our final search on 8 December 2024. We identified 243 unique titles and abstracts. Of these, 168 were excluded after title and abstract review, and 58 after full-text review, leaving 17 eligible studies with data from nine unique cohorts. Investigators with data from seven cohorts provided data.^{22,23,26,27,29–31} We were not able to obtain data from one study on patients with burn injury from Sweden (N = 52)³² and one study on people with SSc from Italy (N = 40).³³ Among the seven cohorts that provided data, two^23,29 provided data for 2658 participants with a burn injury (98% of total eligible participants), and five^{22,26,27,30,31} provided data for 3402 participants with SSc (99% of total eligible participants). See Figure 1.

Characteristics of included studies

As shown in Table 1, the two published studies of burn injury cohorts that provided data included patients with severe burns from five sites in the United States²³ and admitted patients from six sites in Belgium and the Netherlands.²⁹ Mean ages in the two studies were 43 years (standard deviation (SD) = 15 years) and 45 (16) years, and the percentages of females were 27% and 29%. Mean (SD) total body surface area burned was 20% (16%) for participants from the United States and 10% (12%) for participants from Belgium and the Netherlands. Most participant data were from the five sites in the United States (2455 of 2658, 92%).

Table 1.

Descriptions and characteristics of published studies from which data were obtained.

First author Year	Country(ies)	Participants	N Participants^a	N (%) Female^a	Participant Mean (SD) Age in Years^a	Index event and time since burn injury or systemic sclerosis onset	Severity^a
Burn injury
Espinoza²³ 2020	United States	Adults admitted to 5 Model Burn Systems centers who met criteria for a severely burned person^b	1285	353 (27%)	43 (15)	6 months post-injury	Mean (SD) TBSA burn: 20% (16%)
Willemse²⁹ 2023	Belgium Netherlands	Adults with burn injury admitted to 6 centers	224	66 (29%)	45 (16)	3 months post-injury	Mean (SD) TBSA burn: 10% (12%)
Systemic sclerosis
Heinberg²⁶ 2007	United States	Adult outpatients with SSc from a single center	254	217 (85%)	53 (13)	NR	N (%) diffuse SSc: 69 (30%)c
Mills²⁷ 2015	United States	Adult outpatients with SSc from a single center	207	172 (83%)	54 (15)	Mean (SD) years since SSc diagnosis: 8 (8)	N (%) diffuse SSc: 83 (40%)
Jewett²² 2017	Canada	Adult outpatients with SSc from 15 Canadian Scleroderma Research Group centers	856	751 (88%)	57 (12)	Mean (SD) years since onset of non-Raynaud’s symptoms: 12 (9)	N (%) diffuse SSc: 262 (31%)
Harel³⁰ 2019	Canada United Kingdom United States	Adult outpatients with SSc from 28 Scleroderma Patient-centered Intervention Network centers in 7 countries	926	813 (88%)	56 (12)	Mean (SD) years since onset of non-Raynaud’s symptoms: 12 (9)	N (%) diffuse SSc: 399 (43%)
Mattsson³¹ 2023	Sweden	Adult outpatients with SSc from 3 centers	134	108 (81%)	Median = 62 IQR = 53–71	Median (IQR) years since onset of non-Raynaud’s symptoms: 11 (6–18)	N (%) diffuse SSc: 34 (25%)

N: number; SD: standard deviation; TBSA: total body surface area; NR: not reported; SSc: systemic sclerosis; IQR: interquartile range.

Participant characteristics were extracted from published studies from which included datasets were identified. Some numbers differ from characteristics of cohorts for which SWAP subscale data were available and provided (see Table 2). Numbers of participants in provided datasets differed from publication numbers due to continued collection of data post-publication or because of missing sex or age data.

Participants met one or more criteria, which included (1) deep second- and third-degree burns greater than 10% TBSA in patients older than 50 years; (2) deep second- and third-degree burns greater than 20% TBSA; (3) deep second- and third-degree burns with serious threat of functional or cosmetic threat that involve face, hands, feet, genitalia, perineum, or major joints; (4) third-degree burns greater than 5% TBSA; (5) deep electrical burns including lightning injury; (5) burn injury with inhalation injury; and (6) circumferential burns of the extremity or chest.

Reported N diffuse = 69 and N limited = 159.

Table 2.

SWAP dissatisfaction with appearance and social discomfort subscale scores by sex and age^a.

	Dissatisfaction with Appearance						Social Discomfort
	Female			Male			Female			Male
	18–44 Years N Mean (SD)	45–64 Years N Mean (SD)	⩾ 65 Years N Mean (SD)	18–44 Years N Mean (SD)	45–64 Years N Mean (SD)	⩾ 65 Years N Mean (SD)	18–44 Years N Mean (SD)	45–64 Years N Mean (SD)	⩾ 65 Years N Mean (SD)	18–44 Years N Mean (SD)	45–64 Years N Mean (SD)	⩾ 65 Years N Mean (SD)
Burn injury
Espinoza²³ 2020	328 22.6 (12.3)	306 21.9 (11.1)	91 14.9 (9.2)	937 18.1 (11.0)	639 17.8 (10.8)	154 12.1 (8.3)	328 14.1 (8.8)	306 13.9 (8.9)	91 8.0 (8.6)	937 11.0 (8.5)	639 10.7 (8.3)	154 5.9 (5.3)
Willemse²⁹ 2023	37 25.7 (12.2)	18 24.5 (9.7)	8 25.0 (9.1)	61 20.4 (12.7)	62 17.7 (10.0)	17 21.7 (15.2)	37 16.9 (9.6)	18 12.7 (7.9)	8 10.2 (4.3)	61 12.3 (8.1)	62 12.3 (8.0)	17 11.9 (8.9)
Systemic sclerosis
Heinberg²⁶ 2007	54 22.9 (11.7)	106 21.5 (12.0)	39 21.2 (12.5)	5 25.2 (12.4)	18 17.0 (12.4)	4 27.2 (15.8)	54 10.0 (8.3)	106 6.6 (8.3)	39 5.2 (7.5)	5 10.2 (11.3)	18 9.0 (8.7)	4 5.0 (5.7)
Mills²⁷ 2015	40 31.4 (11.9)	82 26.7 (12.5)	42 24.9 (10.7)	7 35.3 (11.9)	18 25.2 (11.5)	5 19.8 (9.1)	40 20.2 (9.5)	82 19.5 (9.5)	42 17.7 (8.7)	7 24.4 (7.1)	18 21.1 (9.2)	5 15.0 (8.2)
Jewett²² 2017	87 25.9 (7.5)	468 26.0 (7.6)	225 27.1 (8.5)	15 25.1 (6.6)	65 23.4 (7.1)	28 24.2 (7.2)	87 16.3 (4.9)	468 15.8 (5.1)	225 14.8 (5.6)	15 15.9 (7.8)	65 15.8 (4.1)	28 15.0 (5.4)
Harel³⁰ 2019	340 22.5 (12.2)	958 22.4 (12.5)	417 21.9 (13.6)	32 19.8 (13.2)	128 20.0 (12.8)	85 17.9 (14.6)	340 12.6 (10.2)	958 10.6 (9.7)	417 6.7 (8.1)	32 9.9 (10.4)	128 8.3 (8.7)	85 6.6 (8.2)
Mattsson³¹ 2023	12 31.8 (13.1)	49 26.3 (9.3)	47 25.9 (12.8)	6 19.7 (12.6)	11 27.4 (15.9)	9 18.1 (11.9)	12 18.0 (9.1)	49 13.5 (7.2)	47 10.7 (5.6)	6 14.0 (8.7)	11 11.5 (6.7)	9 9.0 (3.0)

SWAP: Satisfaction with Appearance Scale.

Number of participants in some cohorts differ from total N per study in Table 1 due to continued collection of data post-publication or because of missing sex or age data for some participants.

Published studies of SSc cohorts included outpatients from two single centers in the United States,^26,27 three centers in Sweden,³¹ a cohort with 15 Canadian sites,²² and an international cohort with 28 sites in seven countries.³⁰ Based on the sites and dates when data were collected, no participant data were included in more than one cohort. Mean ages ranged from 53 to 57 years (one study reported only the median = 62 years),³¹ and the percentage of females ranged from 81% to 88%. Mean years since onset of non-Raynaud’s symptoms ranged from 11 to 12 years in three studies,^22,30,31 and mean time since diagnosis was 8 years in one study²⁷ (not reported in one study).²⁶ The percentage of participants with diffuse SSc subtype ranged from 25% to 43%. Over half of the participant data were from the SPIN Cohort (1960 of 3402, 58%).

Individual cohort scores on the SWAP Dissatisfaction with Appearance and Social Discomfort subscales for burn injury and SSc studies by sex and age groups are shown in Table 2.

Comparison of SWAP Dissatisfaction with Appearance and Social Discomfort subscale scores

Results of meta-analyses of burn injury and SSc subscale scores by sex and age subgroup are shown in Table 3 and Figure 2. For burn injury and SSc, all subscale scores were higher for females than males within the same age group, and scores decreased with increasing age for both sexes. Heterogeneity of estimated scores ranged from 0.0% to 98.6%.

Table 3.

Meta-analysis results of SWAP dissatisfaction with appearance and social discomfort subscale scores by sex and age^a.

	Dissatisfaction with Appearance						Social Discomfort
	Female			Male			Female			Male
	18–44 Years	45–64 Years	⩾ 65 Years	18–44 Years	45–64 Years	⩾ 65 Years	18–44 Years	45–64 Years	⩾ 65 Years	18–44 Years	45–64 Years	⩾ 65 Years
Burn injury (N = 2 cohorts)
N participants	365	324	99	998	701	171	365	324	99	998	701	171
Mean	23.6	22.3	19.5	18.8	17.8	16.2	15.1	13.8	8.8	11.3	11.2	8.5
95% CI	20.8 to 26.4	20.5 to 24.1	9.6 to 29.3	16.7 to 20.8	17.0 to 18.6	6.9 to 25.5	12.5 to 17.7	12.9 to 14.8	6.7 to 10.8	10.2 to 12.3	9.7 to 12.7	2.7 to 14.4
I²	53.3%	16.7%	88.9%	52.2%	0.0%	84.8%	65.2%	0.0%	35.5%	31.8%	55.5%	86.6%
Systemic sclerosis (5 cohorts)
N participants	533	1,663	770	65	240	131	533	1,663	770	65	240	131
Mean	26.3	24.5	24.3	24.6	22.0	20.8	15.2	13.2	11.0	15.1	13.1	10.0
95% CI	22.6 to 29.9	22.4 to 26.6	21.9 to 26.7	19.5 to 29.8	19.3 to 24.8	17.2 to 24.4	11.6 to 18.8	8.9 to 17.5	6.4 to 15.6	9.8 to 20.5	8.5 to 17.6	6.1 to 13.9
I²	86.8%	92.9%	89.7%	62.7%	64.1%	61.9%	92.8%	98.6%	98.5%	81.0%	95.3%	91.0%
Difference (systemic sclerosis – burn injury)
Raw score mean difference	2.7	2.2	4.8	5.9	4.2	4.6	0.1	–0.6	2.2	3.9	1.9	1.5
95% CI	–1.9 to 7.3	–0.5 to 5.0	–5.3 to 15.0	0.4 to 11.4	1.4 to 7.1	–5.4 to 14.6	–4.4 to 4.6	–5.0 to 3.8	–2.8 to 7.3	–1.6 to 9.3	–2.9 to 6.6	–5.6 to 8.5
Standardized mean difference	0.23	0.20	0.41	0.53	0.39	0.42	0.01	–0.07	0.30	0.45	0.23	0.22
95% CI	–0.34 to 0.79	–0.17 to 0.57	–0.18 to 1.00	0.01 to 1.06	0.13 to 0.90	–0.49 to 1.33	–0.43 to 0.45	–0.37 to 0.22	–0.11 to 0.71	0.01 to 0.89	–0.17 to 0.62	–0.34 to 0.79

SWAP: Satisfaction with Appearance Scale; CI: confidence interval.

Number of participants in some cohorts differ from total N per study in Table 1 due to continued collection of data post-publication or because of missing sex or age data for some participants.

As shown in Table 3 and Figure 2, Dissatisfaction with Appearance subscale scores were higher among people with SSc compared to those with a burn injury by 2.2 to 5.7 points (SMD = 0.20 to 0.53) for females and males across all age groups. Differences were statistically significant for males aged 18–44 and 45–64 years. For Social Discomfort, differences were close to zero (SMD < 0.10) for females aged 18–44 and 45–64 years. For females aged ⩾ 65 years and all age groups for males, scores were higher in SSc than burn injury (SMD 0.22 to 0.45), although none were statistically significant.

Discussion

Our main finding was that people with SSc across groups defined by sex (female, male) and age (18–44 years, 45–64 years, ⩾ 65 years) reported that they experience similar or greater dissatisfaction with appearance and appearance-related discomfort in social situations compared to people with a burn injury. Dissatisfaction with Appearance subscale scores were greater among people with SSc, indicating more dissatisfaction with appearance, for both sexes across age groups by 0.20 to 0.53 SMDs, suggesting small to medium differences, although this was only statistically significant for males aged 18–44 years and 45–64 years. For the Social Discomfort subscale, there were no statistically significant differences; score differences were higher among people with SSc for males across age groups (SMD = 0.22 to 0.45) and females aged 65 years or greater (SMD = 0.30) but close to zero for females aged 18–44 years and 45–64 years.

To the best of our knowledge, our study is the first that has compared levels of appearance dissatisfaction and appearance-related social discomfort across samples with different disfiguring medical conditions or injuries. Heterogeneity of estimates was high for most sex and age groups for both SSc and burns, but the overall pattern of scores highlights that body image concerns are at least as great among people with SSc compared to people with burn injury.

The associations of greater body image concerns with female sex and younger age among adults are well-established in the general population and among people with visible differences.^{12,13,15,34–36} Consistent with this, we found that within cohorts of adults with SSc and burn injury, dissatisfaction with appearance and social discomfort were greater among females compared to males and among younger age groups. Body image concerns and other psychological outcomes are also associated with the extent and severity of appearance changes.^5–11 We were not able to account for the extent or severity of appearance changes in our analysis. However, 92% of participants with burn injury were from a United States Model Burn System site, and study eligibility required that they met American Burn Association criteria for a severe burn injury, which includes (1) deep second- and third-degree burns greater than 10% total body surface area (TBSA) in patients older than 50 years; (2) deep second- and third-degree burns greater than 20% TBSA; (3) deep second- and third-degree burns with serious threat of functional or cosmetic threat that involve face, hands, feet, genitalia, perineum, or major joints; (4) third-degree burns greater than 5% TBSA; (5) deep electrical burns including lightning injury; (5) burn injury with inhalation injury; and (6) circumferential burns of the extremity or chest burn injury.²³ SSc cohorts that were reviewed in our study, on the contrary, included any outpatient with SSc with no threshold for severity. Thus, it would seem unlikely that the similar or higher scores in SSc were due to an overrepresentation of people with more severe SSc compared to burn injury.

There are limitations that should be considered in interpreting our results. One is the small number of studies that have assessed dissatisfaction with appearance and appearance-related social discomfort using the SWAP in people with burn injury and SSc. Another is that, although we did not incorporate a risk of bias assessment, included cohorts were largely convenience samples. There are also strengths to consider. People with burn injury are predominantly males and younger adults, whereas people with SSc are mostly female and older. Evaluating results by groups defined by sex and age, which were provided by study authors, facilitated our comparison of people who were similar by sex and age. Our ability to obtain sex- and age-based results from 98% and 99% of eligible participants in cohorts from included publications was also a strength.

In sum, body image concerns, including dissatisfaction with appearance and social discomfort, appear to be similar or greater among people with SSc compared to people who have been hospitalized with a severe burn injury. People with SSc with body image concerns may benefit from interventions, which may include psychological^37–39 and non-surgical cosmetic and other camouflage interventions.⁴⁰ Non-surgical cosmetic and other camouflage interventions are comprised of non-invasive techniques intended to minimize or disguise visible appearance differences. These may include the use of cosmetics (e.g. concealer), prosthetics (e.g. prosthetic eye), clothing and stylistic accessories (e.g. scarves), or hair (e.g. wigs).⁴⁰ Systematic reviews, however, have emphasized that few randomized controlled trials have tested intervention options and highlighted methodological shortcomings and substantial risk of bias in existing trials.^37–40 Well-designed and conducted trials are needed to test interventions to support people with body image concerns due to visible differences from SSc and other medical conditions.

Footnotes

Acknowledgements

We are grateful to the authors of included studies who provided updated results from their cohorts by sex- and age-defined subgroups.

Declaration of conflicting interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: All authors have completed the ICJME uniform disclosure form and declare no support from any organization for the submitted work and no financial relationships with any organizations that might have an interest in the submitted work in the previous 3 years. All authors declare no other relationships or activities that could appear to have influenced the submitted work. An Editorial Board Member of JSRD is an author of this article, therefore, the peer review process was managed by alternative members of the Board and the submitting Board member had no involvement in the decision-making process.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: There was no specific funding for this study. TDS was supported by a Fonds de Recherche du Québec—Santé (FRQS) Master’s Training Scholarship and BDT by a Tier 1 Canada Research Chair, both outside of this work.

ORCID iD

Brett D Thombs

References

Thompson

Kent

Adjusting to disfigurement: processes involved in dealing with being visibly different. Clin Psychol Rev 2001; 21(5): 663–682.

Sarwer

Siminoff

Gardiner

, et al. The psychosocial burden of visible disfigurement following traumatic injury. Front Psychol 2022; 13: 979594.

Vuotto

Ojha

, et al. The role of body image dissatisfaction in the association between treatment-related scarring or disfigurement and psychological distress in adult survivors of childhood cancer. Psychooncology 2018; 27(1): 216–222.

Rumsey

Psychosocial adjustment to skin conditions resulting in visible difference (disfigurement): what do we know. Int J Womens Dermatol 2018; 4(1): 2–7.

Jewett

Hudson

Malcarne

, et al. Sociodemographic and disease correlates of body image distress among patients with systemic sclerosis. PLoS ONE 2012; 7(3): e33281.

Rhoten

Murphy

Ridner

SH.

Body image in patients with head and neck cancer: a review of the literature. Oral Oncol 2013; 49(8): 753–760.

Manier

Rowe

Welsh

, et al. The impact and incidence of altered body image in patients with head and neck tumors: a systematic review. Neurooncol Pract 2018; 5(4): 204–213.

Cleary

Kornhaber

Thapa

, et al. A quantitative systematic review assessing the impact of burn injuries on body image. Body Image 2020; 33: 47–65.

Macias

Hand

Maurer

, et al. Factors associated with risk of body image-related distress in patients with head and neck cancer. JAMA Otolaryngol—Head Neck Surg 2021; 147(12): 1019–1026.

10.

Fournier

Calcagni

Morice-Picard

, et al. Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review. Orphanet J Rare Dis 2023; 18: 39.

11.

van Dalen

Dierckx

Pasmans

SGMA

, et al. Anxiety and depression in adolescents with a visible difference: a systematic review and meta-analysis. Body Image 2020; 33: 38–46.

12.

Tiggemann

Body image across the adult life span: stability and change. Body Image 2004; 1(1): 29–41.

13.

Harris

Carr

AT.

Prevalence of concern about physical appearance in the general population. Br J Plast Surg 2001; 54(3): 223–226.

14.

Clarke

Thompson

Jenkinson

, et al. CBT for appearance anxiety: psychosocial interventions for anxiety due to visible difference. Hoboken, NJ: John Wiley & Sons, 2013.

15.

Quittkat

Hartmann

Düsing

, et al. Body dissatisfaction, importance of appearance, and body appreciation in men and women over the lifespan. Front Psychiatry 2019; 10: 0864.

16.

Allanore

Simms

Distler

, et al. Systemic sclerosis. Nat Rev Dis Primer 2015; 1: 1–21.

17.

Denton

Khanna

Systemic sclerosis. Lancet 2017; 390(10103): 1685–1699.

18.

Ferreli

Gasparini

Parodi

, et al. Cutaneous manifestations of scleroderma and scleroderma-like disorders: a comprehensive review. Clin Rev Allergy Immunol 2017; 53(3): 306–336.

19.

Malcarne

Hansdottir

Greenbergs

, et al. Appearance self-esteem in systemic sclerosis. Cogn Ther Res 1999; 23(2): 197–208.

20.

Jewett

Kwakkenbos

Carrier

, et al. Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study. Clin Exp Rheumatol 2016; 34(5): 92–99.

21.

Lawrence

Heinberg

Roca

, et al. Development and validation of the satisfaction with appearance Scale: assessing body image among burn-injured patients. Psychol Assess 1998; 10(1): 64–70.

22.

Jewett

Kwakkenbos

Hudson

, et al. Assessment of English–French differential item functioning of the Satisfaction with Appearance Scale (SWAP) in systemic sclerosis. Body Image 2017; 22: 97–102.

23.

Espinoza

Friedstat

Faoro

, et al. Geographic variation in outcomes after burn injury. Ann Plast Surg 2020; 84(6): 644–650.

24.

Alkan

Carrier

Henry

, et al. Minimal detectable changes of the HAQ-DI, PROMIS-29v2.0 Domains, and PHQ-8 in systemic sclerosis: a SPIN cohort cross-sectional study. Arthritis Care Res 2024; 9: 25397.

25.

Development validation of the brief satisfaction with appearance scale for systemic sclerosis. Arthrit Care Res 2010; 62: 1779–1786.

26.

Heinberg

Kudel

White

, et al. Assessing body image in patients with systemic sclerosis (scleroderma): validation of the adapted satisfaction with appearance scale. Body Image 2007; 4(1): 79–86.

27.

Mills

Fox

Merz

, et al. Evaluation of the satisfaction with appearance scale and its short form in systemic sclerosis: analysis from the UCLA scleroderma quality of life study. J Rheumatol 2015; 42(9): 1624–1630.

28.

Cohen

Statistical Power Analysis for the Behavioral Sciences. Mahwah, NJ: L. Erlbaum Associates, 1988.

29.

Willemse

Geenen

Egberts

, et al. Perceived stigmatization and fear of negative evaluation: two distinct pathways to body image dissatisfaction and self-esteem in burn survivors. Psychol Health 2023; 38(4): 445–458.

30.

Harel

Mills

Kwakkenbos

, et al. Shortening patient-reported outcome measures through optimal test assembly: application to the social appearance anxiety scale in the scleroderma patient-centered intervention network cohort. BMJ Open 2019; 9(2): e024010.

31.

Mattsson

Hesselstrand

Gunnarsson

, et al. The validity and reliability of the Swedish version of the satisfaction with appearance scale for individuals with systemic sclerosis. J Scleroderma Relat Disord 2023; 8(1): 53–63.

32.

Dahl

Wickman

Björnhagen

, et al. Early assessment and identification of posttraumatic stress disorder, satisfaction with appearance and coping in patients with burns. Burns 2016; 42(8): 1678–1685.

33.

Basta

Margiotta

DPE

Mazzuca

, et al. Factors related to alexithymia in patients with systemic sclerosis: a tight relationship with facial image dissatisfaction. Rheumatol Int 2019; 39(3): 461–467.

34.

Rumsey

Harcourt

. Body image and disfigurement: issues and interventions. Body Image 2004; 1(1): 83–97.

35.

The Oxford handbook of the psychology of appearance . Oxford: Oxford University Press, 2012, xviii, 717.

36.

Sun

Zickgraf

, et al. Meta-analysis of gender differences in body appreciation. Body Image 2020; 33: 90–100.

37.

Norman

Moss

TP.

Psychosocial interventions for adults with visible differences: a systematic review. PeerJ 2015; 3: e870.

38.

Sebri

Durosini

Triberti

, et al. The efficacy of psychological intervention on body image in breast cancer patients and survivors: a systematic-review and meta-analysis. Front Psychol 2021; 12: 611954.

39.

Lewis-Smith

Diedrichs

Rumsey

, et al. Efficacy of psychosocial and physical activity-based interventions to improve body image among women treated for breast cancer: a systematic review. Psychooncology 2018; 27(12): 2687–2699.

40.

Gholizadeh

Rice

Carboni-Jiménez

, et al. Effects of cosmetic and other camouflage interventions on appearance-related and psychological outcomes among adults with visible differences in appearance: a systematic review. BMJ Open 2021; 11(3): e046634.