Author: Lung Cancer Registry Associate Director, Heather Law, MA 

Family caregivers often experience emotional distress and neglect their own well-being while caring for a loved one. Preliminary findings from GO2’s Lung Cancer Registry Caregiver Survey were presented at the 2023 World Conference on Lung Cancer (WCLC) in Singapore in September. 

Understanding the unmet need 

Advances in diagnostic and treatment strategies for lung cancer, such as targeted treatment and immunotherapy, have increased outpatient care (care that doesn’t require a hospital stay). This change impacts the experience of caregivers of people with lung cancer. Caregivers are usually partners, children, or other relatives of a person with lung cancer and provide a broad range of assistance.  

Preliminary analysis of an online longitudinal international survey was conducted by GO2’s Lung Cancer Registry to determine the unmet needs of lung cancer family caregivers. The caregiver survey was promoted to current Registry participants, representing over 60 different countries, as well as to new participants. The survey is comprised of baseline and six-month follow-up questionnaires to capture changes in caregiver experiences over time. 

As of July 2023, 48 individuals completed both parts of the caregiver survey.  

The top three mental health issues most reported as “often” and “always” during the past seven days included:  
  1. Fear 
  2. Irritability 
  3. Feeling uneasy 
The top three reported physical health and well-being issues included: 
  1. Sleep problems 
  2. Trouble exercising as often as they wanted to 
  3. Fatigue and trouble maintaining intimacy with partners (tie) 
The top three requested topics by caregivers were:  
  1. Side effect management or other quality of life impacts 
  2. How to be a caregiver 
  3. Diagnosis or treatment 

Addressing the unmet needs 

Preliminary findings indicate caregivers experience issues related to mental health, physical health, and well-being. Information collected from the survey will directly guide caregiver support programs and resource development here at GO2 for Lung Cancer.  

Caring for someone with lung cancer? Your voice matters.  

While initial survey results were shared at WCLC, we need to hear from more caregivers. The Registry’s Caregiver Survey is still open and we want you hear from you. Amazon and Visa gift cards are available to those who complete the six-month follow-up questionnaire. 

For the purposes of this survey, caregivers are: 

  • People who help a family member or friend who has been diagnosed with lung cancer 
  • People who are not paid for the help they provide 
  • People who take care of health care tasks like managing medications and symptoms or coordinating services and/or household tasks like shopping and cooking, maintenance, and cleaning 
  • Parents, children, spouses, partners, or friends 

A person does not have to live with you to be considered a caregiver. 

How to complete the survey 

If you or someone you know meets the criteria above, complete the survey with these steps: 

  • Join the Lung Cancer Registry 
  • Once logged in, you’ll be taken to the “Home” page inside of the Lung Cancer Registry where you’ll find the Caregiver Survey 

Every response will shape the future of lung cancer support. 

Questions? Contact a Lung Cancer Registry coordinator at registry@go2.org.