Abstract
While the financial aspects of the burden on caregivers for patients with advanced Non-Small Cell Lung Cancer (aNSCLC) have been estimated, limited published information exists on the humanistic burden incurred by these caregivers. Data were taken from a multi-center, cross-sectional study of aNSCLC patients and their caregivers conducted in France, Germany and Italy. The study consisted of three components: medical chart review, patient questionnaire and caregiver questionnaire. Overall, 683 consulting patients and 277 accompanying informal caregivers were recruited via treating physicians. The impact on health related quality of life was measured using the EuroQoL-5D (EQ-5D-3L) while caregiver burden was quantified using the Zarit Burden Interview (ZBI), which consists of 22 items, each rated 0-4. ZBI scores were grouped into: little/no burden (0-20), mild/moderate (21-40), moderate/severe (41-60) and severe burden (61-88). Scores of 24+ were assumed to identify caregivers at risk of depression. Analysis, conducted on 277 matched patient and caregiver forms, was stratified by country and by patients’ line of therapy. Statistical significance was assessed using Mann-Whitney U tests. Caregivers’ mean (SD) age was 55.2 (13.0) years; 78.6% were female and 62.3% were the patient’s partner/spouse. Patients’ mean (SD) age was 66.2 (9.7); 73.6% were male and 91.0% had Stage IV NSCLC. Over two-thirds (70.4%) of patients were receiving 1st line advanced therapy, while 29.6% were receiving later lines of therapy. The mean (SD) EQ-5D-3L index for caregivers was 0.87 (0.19). Differences in EQ-5D-3L were observed between carers of 1st line patients and later line patients (0.89 v 0.83 p=0.003). The mean ZBI score for caregivers was 32.1 (15.6); A quarter (24.0%) of caregivers had little/no burden, 44.6% mild/moderate, 28.8% moderate/severe and 2.6% severe burden; 69.7% of caregivers were identified as at risk of depression. Differences in ZBI were observed between carers of 1st line patients and later line patients (30.9 v 34.9 p=0.099). Comparing these results with other published ZBI data, the burden suffered by aNSCLC patient caregivers appears to be higher than other conditions studied in Europe, namely, Parkinson’s disease (25.8) another study conducted across advanced cancer (18.5). Caregivers for aNSCLC patients suffer significant humanistic burden in addition to the overall burden faced by patients and is likely to result in additional costs. When assessing the impact of a treatment, the potential to improve the impact on caregivers should also be included.
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