Humanistic Burden of Living with Anaplastic Lymphoma Kinase-Positive Non-Small-Cell Lung Cancer: findings from the ALKConnect Patient Insight Network and Research Platform

Abstract

Aim: Evaluate real-world patient preferences, experiences and outcomes (health-related quality of life [HRQoL]) from patients with anaplastic lymphoma kinase-positive (ALK+) non-small-cell lung cancer (NSCLC) utilizing the ALKConnect Patient Insight Network. Patients & methods: Demographics, disease history/status/treatment, patient preferences and HRQoL (MD Anderson Symptom Inventory lung cancer module, reported as symptom severity and interference) were evaluated for US adults with ALK+ NSCLC. Results: Among 104 patients (median age: 53.0 years, 67.3% female, 40.0% employed), HRQoL and 3-month delay in disease progression were important treatment attributes. Burdensome symptoms included fatigue and disturbed sleep. Symptoms interfered most with work and day-to-day activity. Higher HRQoL was associated with ALK tyrosine kinase inhibitor (TKI) treatment and employment. Conclusion: ALKConnect demonstrated that disease progression, HRQoL, fatigue/sleep, ALK TKIs and employment matter in ALK+ NSCLC.

Lung cancer patients with anaplastic lymphoma kinase rearrangement lose affiliation with labor market at diagnosis

“…Our finding of a labor market affiliation for working age (<60 years of age) ALK+ NSCLC patients of 36% 18 months following diagnosis thus compares very well with previous findings both among lung cancer patients in general [ 10 , 33 , 34 ], among lung cancer patients treated with targeted agents at large [ 35 ], and among patients with ALK+ NSCLC specifically [ 36 ]. Our results thus suggest that ALK+ NSCLC patients when assessed according to labor market affiliation currently do not comprise a distinct subgroup of lung cancer patients, despite their superior survival and lessened toxicity burden.…”

“…One study reported that 25% of a small cohort (N = 20) of patients with metastatic lung cancer treated with PD-L1 inhibitors and tyrosine kinase inhibitors from a single institution in Australia were employed following lung cancer diagnosis (median time 27 months) [ 35 ]. The other, larger study used an online survey specific for patients with ALK+ NSCLC in the US and found a labor market affiliation of 40% among 104 patients 25.6 months (median) after diagnosis [ 36 ]. 25% of the patients surveyed in this study matched our definition of working age (<60 years of age), and the majority (77%) of the patients had metastatic or regionally spread disease [ 36 ].…”

“…The other, larger study used an online survey specific for patients with ALK+ NSCLC in the US and found a labor market affiliation of 40% among 104 patients 25.6 months (median) after diagnosis [ 36 ]. 25% of the patients surveyed in this study matched our definition of working age (<60 years of age), and the majority (77%) of the patients had metastatic or regionally spread disease [ 36 ]. The patient population thus resembles the patient population of our study quite well as does the findings related to labor market affiliation (40 and 36% in the US study and our study, respectively).…”