The ALKConnect Patient Insight Network (www.alkconnect.com) is a patient-centered online registry that provides support to and collects information from patients living with Anaplastic Lymphoma Kinase-Positive (ALK+) Non-Small Cell Lung Cancer (NSCLC). The objectives of this study were to: (1) describe the characteristics of patients in ALKConnect; (2) quantify patients’ preferences, ALK+ NSCLC symptom burden, and health-related quality of life (HRQoL); and (3) determine whether disease treatment and employment status were associated with HRQoL.ALKConnect gathered humanistic burden data directly from patients with ALK+ NSCLC. Participants reported that the most burdensome symptoms were fatigue, sleep disturbance, and drowsiness, and that symptoms interfered most with work and general activity. A 3-month delay in cancer progression and HRQoL were important treatment attributes. Patients’ HRQoL was positively associated with ALK TKI treatment and the ability to maintain employment status, suggesting that these aspects may be important for ALK+ NSCLC patients’ well-being. READ ARTICLE
Journal of Thoracic Oncology DOI:10.1016/j.jtho.2019.08.1254
Authors: H. Lin, X. Pan, A. Biller, K. Covey, H. Huang, V. Rangel Miller, M. Smith, H. West