Variable and Instruments
DISEASE, DISEASES
Besides patient demographics (gender, age, disease), caregiver baseline characteristics mainly included: gender, age, marital status, patient-caregiver relationship, professional activity, profession and incomes, impact from caregiving on professional and financial situation, professional help requested, involvement (daily activities (grooming/dressing…); domestic chores (cleaning, grocery shopping, meals…); Administrative management (accounting, mails, decisions); Medical support (accompaniment to medical appointments, medical cares); Physical support services; Financial assistance; Moral and emotional support; Medical decision support.Caregiver questionnaires were self-completed at home using paper-pencil or electronically assessed through a secure web platform according to their preferences. Questionnaires were sent to caregivers, regardless of the social worker intervention, in order to prevent any bias of desirability in the SIG.The SF-36 questionnaire chosen to assess QoL is the most frequently used generic instrument translated and validated in French for a wide range of diseases [All questionnaires were self-administrated quarterly except for ZBI administrated each semester. Detailed procedures have been previously reported [Scores for SF-36 subscales were computed on a 0 (worse QoL) to 100 (best QoL) point scale [