Psychosocial impact of epidermolysis bullosa on patients: A qualitative study.

BACKGROUND: Epidermolysis bullosa (EB) is an inherited disorder that results in painful skin blisters requiring daily wound care. The psychosocial impact of EB is one of the most significant concerns for patients, but there is minimal research addressing these concerns or ways to improve patient quality of life (QoL). OBJECTIVE: To examine the psychosocial impact of EB on affected patients and ways to improve their QoL. METHODS: Eight EB participants were selected from the 2006 DEBRA Family Conference Day in Toronto. Participants were interviewed by a social worker and a field evaluator. The transcript of each interview was assessed using qualitative content analysis. RESULTS: Four themes were identified: school interaction, daily life, family interactions, and societal interactions. Participants reported being teased and avoided by peers, and they felt their conditions were misunderstood by the general public. School absenteeism resulted in some patients falling behind in school, which may have been misinterpreted as intellectual impairment. Patients acknowledged significant dependence on others and felt they were contributing to caregiver burden. CONCLUSIONS: Our findings highlight the psychosocial impact of EB on patients. As EB awareness and resources to support patients and caregivers have improved since this study was conducted, more studies exploring the current landscape and opportunities to improve quality of life are needed.

The use of noninvasive imaging techniques in the diagnosis of melanoma: a prospective diagnostic accuracy study.

BACKGROUND: Early detection of melanoma is crucial to improving the detection of thin curable melanomas. Noninvasive, computer-assisted methods have been developed to use at the bedside to aid in diagnoses but have not been compared directly in a clinical setting. OBJECTIVE: We conducted a prospective diagnostic accuracy study comparing a dermatologist's clinical examination at the bedside, teledermatology, and noninvasive imaging techniques (FotoFinder, MelaFind, and Verisante Aura). METHODS: A total of 184 patients were recruited prospectively from an outpatient dermatology clinic, with lesions imaged, assessed, and excised. Skin specimens were assessed by 2 blinded pathologists, providing the gold standard comparison. RESULTS: Fifty-nine lesions from 56 patients had a histopathologic diagnosis of melanoma, whereas 150 lesions from 128 patients were diagnosed as benign. Sensitivities and specificities were, respectively, MelaFind (82.5%, 52.4%), Verisante Aura (21.4%, 86.2%), and FotoFinder Moleanalyzer Pro (88.1%, 78.8%). The sensitivity and specificity of the teledermoscopist (84.5% and 82.6%, respectively) and local dermatologist (96.6% and 32.2%, respectively) were also compared. LIMITATIONS: There are inherent limitations in using pathology as the gold standard to compare sensitivities and specificities. CONCLUSION: This study demonstrates that the highest sensitivity and specificity of the instruments were established with the FotoFinder Moleanalyzer Pro, which could be a valuable tool to assist with, but not replace, clinical decision making.