A large prospective patient-advocacy assessment of fears, concerns, and challenges in patients diagnosed with lung cancer in the United States.
Abstract
8073 Background: Studies have been conducted assessing patient (pt) experiences with lung cancer, but minimal data is available on how fears and challenges differ by age, region, and disease stage. Through a pt advocacy organization, we performed a prospective analysis to capture pt and caregiver perceptions. Methods: 2055 surveys were sent out by non-profit organizations to US pts diagnosed with lung cancer and caregivers. 46% of the surveys (n = 956) were returned. Respondents included 63% (N = 603) pts (included in this abstract), 35.5% caregivers, and 1.5% medical professionals. Demographics included: ethnicity, time from diagnosis, gender, stage, region of country, age, role, and current disease status. Of 36 survey questions, 27 were multiple choice, 9 were open-ended and analyzed for recurring themes. Results were analyzed by region, stage, and age to determine if these influenced perspectives about living with lung cancer, and challenges with medical care or treatment. Chi-square test was used to assess differences in responses to survey questions across participant groups. Additional analysis was conducted using Fisher's exact test. Responses to each survey question were categorized, and the proportions of the topics were compared between participant groups. Results: Overall challenges reported by pts varied significantly by disease stage—both at the time of diagnosis (p < 0.001) and during treatment (p < 0.001). The fear cited most was disease progression or recurrence, in stage I (25.8%) or stage IV (27%) disease. Significant differences were observed across age groups relating to challenges with medical care or treatment (p < 0.001), and fears of living with lung cancer. (p < 0.001). Pts older than 45 were more concerned with side effects at diagnosis than younger than 45 (55.1% vs 33%, p < 0.0001) and were less concerned with financial issues (25.7% vs 44.7%, p < 0.0001) at treatment. Care costs and transportation challenges varied regionally, peaking in the Midwest (60.4%) and Southwest (56.5%). Conclusions: Fears, concerns and challenges faced by pts with lung cancer vary significantly by age, disease stage at diagnosis, and during treatment. The findings reveal an opportunity to deliver better support to pts throughout their journey and to allocate resources to address specific concerns. Survey Question Topic Age: </= 44 (N=219)* Age: >/= 45 (N=321)* Fisher’s Exact Test Fears Progression & Recurrence 10% (21) 29% (94) p < 0.0001 " Emotional & Psychological 18% (40) 10% (33) p < 0.01 " Inadequate Information 5% (11) 10% (33) p < 0.05 Challenges at Diagnosis Varied opinions 34% (75) 20% (63) p < 0.001 " Financial 40% (88) 24% (78) p < 0.0001 " Depression 32% (70) 53% (169) p < 0.0001 Challenges at Treatment Side Effects 33% (73) 55% (177) p < 0.0001 " Varied opinions 28% (62) 12% (39) p < 0.0001 " Financial 45% (98) 26% (82) p < 0.0001 *63 patients did not respond to the question on age.
Article Details
Journal Info
Journal of Clinical Oncology
Lippincott Williams & Wilkins
Authors (11)
Lisa Spain
Rexanna's Foundation, Prosper, TX
Peixin Jiang
Department of Pathology & Immunology, Baylor College of Medicine
Sara Patton
IASLC, Denver, CO
Daniel Richard Gomez
Department of Radiation Oncology, Memorial Sloan Kettering Cancer Center, New York, NY
Alexandre Reuben
Dhru Deb
Lung Cancer Research Foundation, New York, NY
Amy Cipau
Lung Cancer Initiative, Raleigh, NC
Hildreth Grossman
Upstage Lung Cancer, Brookline, MA
Marc Muskavitch
ALK Positive, Incorporated, Atlanta, GA
Courtney Brandt
Lung Cancer Research Foundation, New York, NY
Joan H. Schiller
Lung Cancer Research Foundation, University of Virginia, Vienna, VA