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Original article
Development and validation of a lung transplant-specific disability questionnaire
  1. Jonathan Paul Singer1,
  2. Paul David Blanc1,2,3,
  3. Y Monica Dean1,
  4. Steven Hays1,
  5. Lorriana Leard1,
  6. Jasleen Kukreja4,
  7. Jeffrey Golden1,
  8. Patricia P Katz5
  1. 1Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, USA
  2. 2Cardiovascular Research Institute, University of California, San Francisco, USA
  3. 3Division of Occupational and Environmental Medicine, Department of Medicine, University of California, San Francisco, USA
  4. 4Division of Cardiothoracic Surgery, Department of Surgery, University of California, San Francisco, USA
  5. 5Department of Medicine and Institute for Health Policy Studies, University of California, San Francisco, USA
  1. Correspondence to : Dr Jonathan Singer, Division of Pulmonary, Critical Care, Allergy, and Sleep Medicine, Department of Medicine, University of California, San Francisco, 350 Parnassus Avenue, Suite 609, San Francisco, CA 94117, USA; jon.singer{at}ucsf.edu

Abstract

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.

  • Lung Transplantation
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