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This study describes patient adherence to leukemia maintenance therapy and the factors associated with nonadherence, with a particular focus on the different age groups concerned. Sixty-four in-depth interviews were performed in three centers among 31 parents of children, 12 parents of adolescents, 12 adolescents, and 9 adult patients. Adherence was determined through a multimethod approach based on patient and/or parent responses to three self-administered questions and patient and/or parent interviews. The results were compared with physician evaluation of adherence. Factors explaining nonadherence were investigated in the in-depth interviews and by statistical analysis of self-administered questionnaires. Intentional nonadherence occurred rarely (4/52 patients, 8%) following poor tolerance of the maintenance therapy. Despite a high motivation to follow the maintenance therapy, repeated forgetfulness (8/52, 15%) was not rare and rarely detected by physicians. Nonadherence increased with age, but also existed among children. Outings, the administration of therapy at bedtime, the lack of monitoring, a low socioeconomic status, and the hepatic side effects of the treatment were also associated with nonadherence. Declared nonadherence of leukemia maintenance therapy is not negligible and should be screened at follow-up consultations using three simple questions.

To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.

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The 'Vécu et Santé Perçue des Adolescents' (VSP-A) questionnaire is a French generic self-administered health-related quality of life (HRQL) instrument for adolescents which comprises 40 items, allowing the calculation of six dimensions as well as an index. Regression methods were used to select 12 items from the VSP-A to reproduce its HRQL index. The resulting 12-item short-form (VSP-A12) achieved an adjusted R2 of 0.907 in prediction of the VSP-A index. Scoring algorithm used to score this 12-item index achieved a R2 of 0.901 with the VSP-A index when cross-validated in the validation sample (n = 2941). Numerous tests of empirical validity previously published for the VSP-A were replicated for the VSP-A12, including comparisons between groups known to differ in terms of gender, age or health status. All the significant results shown by the VSP-A index were also encountered by the VSP-A12 summary measure. The ability of VSP-A12 to discriminate between healthy and ill adolescents was also proven. A test-retest correlation (4 weeks) of 0.745 was observed for the 12-item HRQL index in the target population (n = 664). Average score for this shorter index closely mirrored VSP-A index, although standard deviation was always greater for the VSP-A12.