PA04.03 Helpline: Adapting to Changing Needs and Evolving Science

Abstract

The Lung Cancer Alliance HelpLine launched over 21 years ago and until recently was the only lung cancer-specific toll-free line in the United States. The reasons people call—for information, understanding, referral, compassion and most of all, hope—remain the same over time. But to keep pace with dramatic advances in the ways lung cancer is detected, diagnosed and treated, the LCA HelpLine has adapted quickly to meet the changing needs of our community. For many survivors and their loved ones, understanding lung cancer and its treatment is a challenge. Those impacted by the disease tend to be older, poorer and less educated, groups which also prefer to get their initial cancer information from their treatment teams. With competing time demands, treatment teams may not have enough time to ensure information is understood or to be sensitive to providing it when the survivor can absorb, process and remember. Some are hesitant to admit they don’t understand all they have been told and are uncomfortable asking questions. Over the past 3.5 years, there have been nearly equal numbers of patients and caregivers calling the HelpLine. Roughly three-quarters of callers were women. In 2016, LCA began tracking more call statistics. Of those who told us the type of lung cancer, we see 83% NSLCC and 17% SCLC – quite representative of the lung cancer population. More than half (53%) were already in treatment. As the science has evolved and practice-changing discoveries are made, professional HelpLine staff provides up-to-date information, support and referrals to those in our community, no matter their place in the journey. The HelpLine provides the opportunity for in-depth conversations, problem solving and the development of questions to ask the team—it serves not as a substitute for conversations with treatment team but as support and complement to them. The LCA HelpLine also has grown with the internet. For some, the internet is a wealth of knowledge, psychosocial support and information. But sometimes even savvy users need help interpreting the information they have found. For others, the internet is a scary and overwhelming place, full of difficult statistics, conflicting recommendations and hard to understand concepts. Additionally, many in our community do not have access to the internet at all or lack broadband speeds that make it an effective tool. While the internet can be helpful, it does not take the place of contact with another caring person who can help. The HelpLine also gives us daily contact with lung cancer community and allows us to keep abreast of what lung cancer patients, their loved ones and those at risk need most. And as we listen, we adapt our services and programs to their needs. For example, we have recently started offering a new webinar series on the top symptoms and side effects reported by those in treatment and long-term survivors. Recently, the pace of scientific discovery and drug development in lung cancer has been accelerating rapidly. With six new drugs approved by the Food and Drug Administration in 2015 and countless new clinical trials launching to test not only new drugs but novel combinations of different classes of agents, patients and caregivers can be even more confused about the best treatment options for them. To address this changing environment, we have recently launched the LungMatch program to help patients find and understand personalized treatment options that they can discuss with their treatment team. LungMatch includes referrals to a concierge service for molecular testing if patients have not had it, a new, user-friendly online matching platform, and in-house personalized clinical trial navigation for interested callers on the HelpLine. The program is still in its infancy, but in the first month of tracking, we determined that 85% of callers asked had never been on clinical trials and only 50% reported molecular testing of the lung cancer. These early statistics indicate the widespread need in the lung cancer community. Through adapting to the changing needs of our community and helping them understand the evolving science, the HelpLine has been a lifeline for the lung cancer community in the United States for over 21 years. patient support, lung cancer, clinical trials, psychosocial support