An overview of patient experiences with eczema were described in study data published in British Journal of Dermatology. Overall, many patients felt that clinicians and peers tend to dismiss the psychosocial effect of eczema. Others also expressed a need for more information about eczema treatment.
Investigators conducted a systematic search of MEDLINE, EMBASE, PsycINFO, and CINAHL from inception through February 2019 for qualitative studies focusing on patient experiences with eczema and eczema treatment. Studies describing the experiences of clinicians were excluded. Study data were extracted and systematically coded to identify common themes in patient experiences. Study quality was assessed using the Consolidated Criteria for Reporting Qualitative Research, although no studies were excluded on the grounds of quality alone.
A total of 39 papers describing 32 studies were included in the thematic synthesis. The pooled study cohort included 1007 participants, including 405 parents of children with eczema, 252 patients with eczema, and 350 online forum users. Study quality was generally high; participant selection, study setting, and analytic methods were well-reported. Overall, 4 analytical themes were identified: 1) Eczema viewed as transient rather than chronic; 2) Psychosocial impact of eczema not acknowledged by others; 3) Concerns about eczema treatments; and 4) Insufficient information eczema.
1. Eczema viewed as transient rather than chronic
According to the thematic analysis, patients with eczema experience frustration at the chronic nature of eczema. Many expressed a desire to identify their underlying “cause” of eczema and subsequently cure the condition. Parents of children with eczema expressed hopes that their child would “outgrow” eczema. The perception of eczema as a short-term condition was associated with disappointment with treatment options, which provide only symptom relief rather than a “cure.”
2. Psychosocial impact of eczema not acknowledged by others
Study participants frequently expressed frustration at the lack of acknowledgement for the psychological burden of eczema. Eczema was significantly associated with low mood, poor self-esteem, persistent discomfort, and even sleep disruption. Even so, many reported that health professionals did not take their symptoms seriously. Others described their peers dismissing their symptoms as “just…[dry] skin” or something that would resolve with time.
3. Concerns about eczema treatments
Many patients and carers expressed concerns about the safety of topical corticosteroids. Long-term use of topical corticosteroids may cause skin thinning, and some patients reported building a tolerance to certain topical treatments. Others described receiving conflicting advice from practitioners, with some health professionals advising against long-term steroid use and others encouraging it.
4. Insufficient information about eczema
Overall, the study cohort described a dearth of information about eczema. Advice and treatment suggestions may vary between practitioners. Many expressed a desire for a “demonstration” from health professionals regarding how much topical treatment to apply. Other patients said they felt their treatment was not personalized or up to date.
Limitations to the study, as cited by the researchers, include that the study data was only taken from peer-reviewed journals and that the synthesis process is inherently interpretive.
Results from this thematic analysis emphasize the psychosocial burden of eczema. Practitioners can encourage effective self-management of eczema by acknowledging patient concerns and providing clear treatment advice. “Health professionals need to address common treatment beliefs and concerns and seek positive ways to promote a ‘control not cure’ message to support effective ongoing self-management,” investigators wrote.
Teasdale E, Muller I, Sivyer K, et al. Views and experiences of managing eczema: systematic review and thematic synthesis of qualitative studies [published online June 12, 2020]. Br J Dermatol. doi: 10.1111/bjd.19299