In patients with EB mental components of SF-36 scores are similar to the normal population. The perceived disease severity and skin area involved are relevant for QoL in all EB types/subtypes. EB imposes a heavy burden on the caregiver and the family. Psychological support and close monitoring of QoL may help patients with EB and their carers.

This study identified the needs of terminal cancer patients, investigated the factors associated with unmet needs, and assessed psychological and symptom distress associated with unsolved needs. Ninety-four patients were randomly selected from 324 patients admitted for palliative care in 13 Italian centers. Two self-administered questionnaires (the Symptom Distress Scale and the Psychological Distress Inventory) were administered to all the patients. Patients needs were identified using a semi-structured interview, aimed at exploring five areas: physiological needs, safety needs, love and belonging needs, self-esteem needs, self-fulfillment needs. A content analysis of the answers defined 11 needs, and identified patients with unmet needs. The most frequent unmet needs were symptom control (62.8%), occupational functioning (62.1%), and emotional support (51.7%). The less frequently reported needs were those related to personal care (14.6%), financial support (14.1%), and emotional closeness (13.8%). Low functional state was significantly associated with a high proportion of patients with unmet needs of personal care, information, communication, occupational functioning, and emotional closeness. Patients with unmet needs showed significantly higher psychological and symptom distress for most needs. This study provides some suggestions about the concerns that should be carefully considered during the late stage of cancer.

The preliminary EORTC QLQ-H&N43 can now be used in academic research. Psychometrics will be tested in a larger field study.

Background We validated the new European Organisation for Research and Treatment of Cancer Quality of Life Head and Neck Module (EORTC QLQ‐HN43). Methods We enrolled 812 patients with head and neck cancer from 18 countries. Group 1 completed the questionnaire before therapy, and 3 and 6 months later. In group 2 (survivors), we determined test–retest reliability using intraclass correlation coefficients (ICC). Internal consistency was assessed using Cronbach's Alpha, the scale structure with confirmatory factor analysis, and discriminant validity with known‐group comparisons. Results Cronbach's alpha was >0.70 in 10 of the 12 multi‐item scales. All standardized factor loadings exceeded 0.40. The ICC was >0.70 in all but two scales. Differences in scale scores between known‐groups were >10 points in 17 of the 19 scales. Sensitivity to change was found to be sufficient in 18 scales. Conclusions Evidence supports the reliability and validity of the EORTC QLQ‐HN43 as a measure of quality of life.