TY - JOUR T1 - Development and validation of a lung transplant-specific disability questionnaire JF - Thorax JO - Thorax SP - 445 LP - 450 DO - 10.1136/thoraxjnl-2013-204557 VL - 69 IS - 5 AU - Jonathan Paul Singer AU - Paul David Blanc AU - Y Monica Dean AU - Steven Hays AU - Lorriana Leard AU - Jasleen Kukreja AU - Jeffrey Golden AU - Patricia P Katz Y1 - 2014/05/01 UR - http://thorax.bmj.com/content/69/5/445.abstract N2 - Background Lung transplant (LT) aims to extend survival and improve patient-centred outcomes (PCOs) by reducing disability and improving health-related quality of life (HRQL). Few PCO instruments have been validated in LT populations. We aimed to develop and validate a shortened version of the valued life activities (VLA) disability scale specific to LT. Methods We used data from 140 subjects participating in an ongoing cohort study of LT. Subjects completed a survey battery, including VLA items, and physical assessments before LT. To develop a shortened LT-specific VLA (LT-VLA), we iteratively deleted items from a longer 32-item VLA battery, retaining the instrument's conceptual framework, scoring and performance characteristics. We evaluated LT-VLA validity by testing correlations with a HRQL measure (Short Form-12 Physical Function (SF-12 PF) subscale), forced vital capacity % (FVC%) predicted and 6 minute walk distance (6MWD). Responsiveness was evaluated in 84 subjects who completed assessments before and after LT. Results The 15-item LT-VLA scoring closely matched the longer VLA (correlations ≥0.96) and had excellent internal consistency (Cronbach's α 0.92). The LT-VLA required only 3 min or less to administer. The LT-VLA, measured as mean difficulty in performing each of the 15 activities queried, correlated with FVC% predicted (r=−0.30), 6MWD (r=−0.38) and SF-12 PF (r=−0.47) (all p<0.01). The LT-VLA mean difficulty was responsive to change from before to after LT (63% improvement; effect size=1.60). Conclusions The LT-VLA is a short, easy to administer, valid and responsive disease-specific PCO instrument that may be useful in clinical and research applications for lung transplantation. ER -