Table 4 Details of reviewed studies about ichthyosis according to location, sample, method design and significant outcomes
Setting | Method | Results | Study quality | ||||||
|---|---|---|---|---|---|---|---|---|---|
Ref. | Location | N | Design | Tools | Comparator(s) | IV(s) | DV(s) | Significant outcomes | |
Wren et al. [95] | Wales | 371 (54 XLI♂; 83 ♀XLI-carrier; 82 IV; 152 psoriasis) | Cross-sectional—quantitative (moderate) | Questionnaires (CISI, PASI, K10; ASRS; AQ10; BITE; DLQI; FSQ) | 1116–18,700 non-affected subjects, students or outpatients (extractions from other studies) | Condition group; skin disease severity | Mood/neurodevelopmental traits; Skin-disease-specific QoL; stigmatization | All groups: psychological distress↑ (i.e. depression↑; anxiety↑) vs. non-affected subjects*** All groups: atypical neurodevelopmental trait↑ (i.e. ASD↑; ADHD↑) vs. non-affected subjects* IV ♀: ichthyosis severity↑ ↔ recent adverse mood symptoms↑* Main factors influencing XLI & IV mood: stigma / bullying; embarrassment of social situation; reduced social life (esp.♂-depression); difficulty regulating body temperature (esp.♀-irritability); skin related discomfort & difficulties w/ treating ichthyosis (esp.♀-irritability & ♂-anxiety) | Moderate |
Abeni et al. [94] | Italy | 94 (including 52 subjects < 18 yrs) | Cross-sectional—quantitative (low) | Questionnaires (DLQI; FBI) | N/A | Biomedical datas; Ichthyosis severity & symptoms | Skin-disease-specific QoL; Family burden | QoL↓ ↔ Disease severity↑* (e.g. fissures*, itch**, recurrent infections**, walking problems**) QoL aspects impacted = itch & pain*, embarrassment & self-consciousness*, problems w/ clothing choice*, problems caused by treatment* Family burden↑ ↔ Disease severity↑* (e.g. thick scales*, fissures*, or foul smell*) + harlequin & lamellar ichthyosis** Psychological dimension of Family burden were the most impacted* | Moderate |
Cortès et al. [97] | Mexico | 26 (only LI) | Cross-sectional—quantitative (moderate) | Questionnaires (CISI; DBI-II; DLQI) | 26 non-affected subjects | Ichthyosis severity | Depression; Skin-disease-specific QoL | LI patients’ depression↑ vs. non-affected subjects*** No correlations between ichthyosis severity ↔ depression / QoL | Moderate |
Sun et al. [93] | USA | 181 (including 53 subjects < 17 yrs) | Cross-sectional—quantitative (low) | Questionnaires (DLQI; PHQ-9; GAD-7) | N/A | Biomedical datas (e.g. ichthyosis features) | Skin-disease-specific QoL; Depression; Anxiety | Adults w/ ichthyosis: QoL impairments (95%); depression + (34%); anxiety + (27%) Adults w/ ichthyosis: Leisure impairment ↔ depression↑***; anxiety↑* Adults w/ ichthyosis: Difficulties at work ↔ anxiety↑* | Moderate |
Dreyfus et al. [90] | France | 241 (including 70 subjects < 18 yrs) | Cross-sectional—quantitative (low) | Questionnaires (VAS; DLQI) | N/A | Medical care; out-of-pocket expenses; work/school/leisure activities; Ichthyosis severity | Skin-disease-specific QoL | Medical care: regularly followed by a physician (90%); no feedback about genetic tests (70%) Impact on domestic life: moisturizing creams each day (94%); affects clothing & footwear (71%); additional housework (47%); negative impact on familial and conjugal functioning (25%) Financial burden: care expenses not fully covered (48%); out-of-pocket expenditure (86%)\(\approx\) 526€/yr Impairment in outside activities: workplace discrimination (27%), restriction in leisure & sports (e.g. swimming-pool) (35%) | Moderate |
Dreyfus et al. [91] | France | 158 (including about 20 subjects < 18 yrs) | Cross-sectional—quantitative (low) | Questionnaires (VAS; DLQI) | N/A | Ichthyosis severity | Skin-disease-specific QoL | The most affected QoL areas: symptoms & feelings (86%); daily activities (77%); treatments (62%); work (59%); leisure (55%); personal relationships (45%) QoL↓ ↔ Ichthyosis severity↑*** & ♀* | Moderate |
Mazereeuw-Hautier et al. [92] | France | 25 | Exploratory -qualitative (low) | Focus groups (n = 5) (TCA) | N/A | N/A | N/A | Physical health: pain & impaired mobility, pruritus, smelly skin Daily life: activity or work avoidance, daily cream application Relation to others: dealing w/ other reactions, intimate relations issues, lack of interest from medicine Personal aspects: fear / stress related to future, negative feelings | High |
Kamalpour et al. [96] | USA | 235 (including about 70 subjects < 18 yrs) | Cross-sectional—quantitative (low) | Questionnaires (DLQI; CISI; TimeTx; DermVisits) | N/A | Biomedical datas; Ichthyosis severity | Skin-disease-specific QoL; Resource utilization | Adults QoL↓ vs. children* + ♀ QoL↓ vs. ♂* QoL↓ ← erythema severity↑**, hyperkeratosis severity↑**, time spent in daily treatment↑**, ichthyosis type**, age↑* (the last one’s really weak…) TimeTx↑ & DermVisits↑ ← disease severity↑*, age↑* (+ family history → DermVisits*) | Moderate |
Gånemo et al. [129] | Sweden | 122 | Cross-sectional—quantitative (moderate) | Questionnaires (DLQI; SF-36) | 117 non-affected subjects (extracted from another study) | Biomedical datas (e.g. ichthyosis features) | General & skin-disease-specific QoL | LI patients QoL↓ vs. XLI patients* Ichthyosis patients QoL↓ on 4 dimensions (…) vs. normative pop.* | High |
Gånemo et al. [128] | Sweden | 10 | Cross-sectional mixed—quali-quantitative (low) | Semi-structured interviews (TCA) & questionnaires (NHP-I & II) | N/A | Biomedical datas; Ichtyosis severity | Health-related QoL; Health-related problem in daily life | Childhood: parents deeply engaged; feeling different from peers; bullying; shyness; gynophobia; professional orientation; thoughts of how to find a partner Adulthood: regular doctor appointment (or naturopath, homeopath); improvement of symptoms; time-consuming skin care; skin discomfort (heat intolerance); genetic inheritance concerns | Moderate |