Considering Caregivers: The Lung Cancer Registry’s Newest Initiative

Authors: John Wells, MBA, Senior Specialist, Lung Cancer Registry; Jamie L. Studts, PhD, Professor of Medical Oncology and Scientific Director of Behavioral Oncology, University of Colorado School of Medicine; GO2 for Lung Cancer Scientific Leadership Board Member; International Caregiver Survey Working Group; Daniel A. Saez, MSc, Manager, LungMATCH Navigation Program, GO2 for Lung Cancer

Caregivers often help people with lung cancer learn about their disease, perform daily tasks and manage the complex emotional struggles that start at diagnosis. For the caregiver, however, this adds to their own personal stressors—whether stemming from taking care of their kids and working to having their own complex feelings and experiences upon learning their loved one is ill. Maybe they are angry at them for having smoked at some point in their life or maybe they are worried about the financial burden that comes with expensive treatments. As scary as lung cancer can be at times to patients, it can also be scary for caregivers.

It’s time to consider caregiver challenges and needs

As lung cancer treatment options have increased in the past decade, more people with lung cancer have become survivors and advocates. Researchers and clinicians have started to better understand the patient experience thanks to advocates participating in everything from committees that allocate government funds for research to educational conferences and clinical trial design. The lung cancer community has benefited tremendously from patient advocates. Now it is time that we include the unique needs and challenges caregivers face in the co-survivorship experience.

We want to learn about the experiences of caregivers to guide the development of more programs and resources to support caregivers. GO2 for Lung Cancer worked with caregivers, providers and researchers to create The International Caregiver Survey. It is the latest research study available from the Lung Cancer Registry. To learn more about the caregiver experience by collecting information about caregivers’ past and current experiences, GO2 for Lung Cancer aims to identify and prioritize areas that require attention from a policy and programmatic perspective. The survey has been released in English, Spanish, simplified Chinese, German and French to capture the experience of a diverse population of caregivers and truly shape an international base of information.

How survey participation makes a global impact

GO2 for Lung Cancer’s Lung Cancer Registry has staff researchers ready to analyze survey responses as they are submitted, allowing for enhanced understanding of co-survivorship experiences. Results will be shared around the world thanks to the existing global educational platforms for research dissemination that partner organizations such as the International Association for the Study of Lung Cancer have created. Allowing researchers to understand and collaborate about caregiver-provided information will enable GO2 for Lung Cancer, through its network of associated Centers of Excellence, to develop programs based on what needs are most urgent and to tailor existing resources to individual caregivers.

Read more about the International Caregiver Survey in the article GO2 for Lung Cancer Aims to Create Resources for Caregivers published on IASLC Lung Cancer News.