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Caregiver Corner: Tips When Researching Lung Cancer

Caregiver Corner: Tips When Researching Lung Cancer

Strategies for sorting through information from scientific studies, patient education materials, and clinical trials.

When a loved one has cancer, you want to learn all that you can about the particular type of cancer, the ways it can be treated, and the everyday things that can improve your loved one’s quality of life—what to eat, how to manage symptoms and cope with side effects from treatment, how to provide the emotional support they need. We’re fortunate to live during a time when information is more easily accessed than any other point in history—just type what you’re looking for into a phone or computer (or ask a voice assistant) and information starts to appear. Websites. Articles. Studies. Clinical trials. Press releases.

There are downsides to having instant access to so much information. There is a lot to sort through. A lot of information tends to get repeated. There are sometimes contradictory or conflicting claims that make it difficult to tell which information to trust.

Trying to make sense of everything can be overwhelming and stressful—the last thing a caregiver needs. Below are some strategies to help you sort through your search results and evaluate the information you come across in your research.

Be sure you are comparing apples to apples
Not all information about cancer will apply to other types of cancer. For example, lung cancers mostly fall into two broad types—non-small cell lung cancer (NSCLC) and small cell lung cancer (SCLC). While both are lung cancer and share similarities—such as symptoms, diagnosis, and risk factors—NSCLC and SCLC are different in how they grow and metastasize, and require different approaches to treatment. Be sure what you are reading is relevant to the type of cancer you are researching.

Read carefully and critically
Approach what you read with a critical eye. Check when the website information was published and the last time it was updated (the more recently updated, the better), look for citations or sources for the claims that the information makes, and check if the information has been reviewed by a qualified professional.

Also consider where the information is coming from. Generally, you will want to be skeptical of information posted in forums or on social media, publications that do not have a rigorous review process, and any information that comes from advertising or marketing. Look for information from:

  • Government agencies, with web addresses ending in ".gov"
  • National, nonprofit organizations with web addresses ending in ".org"
  • University medical centers with web addresses ending in ".edu"
  • Professional organizations such as the American Academy of Family Physicians or the American Cancer Society
  • Publications that display the logo from the Health On the Net Foundation (HON) (This Switzerland-based organization aims to improve the quality of health information online, and websites that are allowed to display the HON logo must meet standards for authorship, documentation, and sponsorship of the site.)
  • UpToDate, which publishes point-of-care information for healthcare providers, but also has pages for patient education

It’s also important to pay attention to how a website is using the data it collects from you. Be sure to read the terms and conditions before clicking “accept” and understand what you are agreeing to. Health information should always be confidential.

Talk to your loved one’s healthcare provider
There is no substitute for a discussion with a healthcare provider. The more prepared for an appointment you and your loved one are, the better. Encourage your loved one—and help them, if necessary—to keep a journal of how they are feeling on a day-to-day basis, noting things like mood, symptoms, appetite, and how they feel about treatment. When it is time for the appointment, bring a list of questions and concerns, take notes, and ask for recommendations—but also recognize when your loved one needs privacy to talk to their healthcare provider alone.

Also be sure to pay attention to how you are feeling—caregiving is often demanding and stressful. Do not ignore your own needs, and know when to ask for help when you need it.

Medically reviewed in July 2018.

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