Researchers looked at what information head and neck cancer patients and their caregivers need to make good treatment decisions. They found that patients want to know more about their diagnosis, treatment risks, how to eat and speak after treatment, and how to live well as survivors. Caregivers also need information but are often overlooked. The study shows that current information isn’t meeting patients’ needs, and doctors need better tools to help patients understand their options and make confident choices about their care.

The Quick Take

  • What they studied: What information head and neck cancer patients and their caregivers need to make confident treatment decisions
  • Who participated: Analysis of 30 research studies involving head and neck cancer patients and their caregivers from various countries
  • Key finding: Patients have many unmet information needs, especially about treatment risks (33% of studies), eating and speaking strategies (20%), and diagnosis details
  • What it means for you: If you or a loved one has head and neck cancer, don’t hesitate to ask your healthcare team for more detailed information about all aspects of treatment and recovery

The Research Details

This was a scoping review, which means researchers searched through thousands of published studies to find patterns in what head and neck cancer patients need to know. They looked through over 10,000 research papers published between 2012 and 2022, focusing on studies that examined patient information needs for making treatment decisions. They used strict criteria to select only the most relevant studies that specifically looked at what patients wanted to know.

This type of research is important because it combines findings from many different studies to give us a bigger picture of patient needs. Instead of just looking at one group of patients, this approach helps identify common information gaps across many different situations and healthcare systems.

The researchers followed established guidelines for conducting reviews and searched multiple medical databases to avoid missing important studies. However, they only included studies published in English, which may have missed some international perspectives on patient information needs.

What the Results Show

The study found that head and neck cancer patients have significant unmet information needs across all stages of their treatment journey. The most common needs included understanding treatment risks (found in 33% of studies), learning about eating and speaking strategies during and after treatment (20%), and getting clear information about their diagnosis (10%). Patients also wanted to know about the purpose of medical procedures (20%) and how human papillomavirus relates to their cancer (7%). These needs changed as patients moved through different phases of treatment, from initial diagnosis through survivorship.

Caregivers were often overlooked in information sharing, appearing in only 17% of the studies. When their needs were studied, caregivers wanted information about stress reduction strategies, how to participate in treatment decisions, and where to find the best medical care. Patients also had moderate needs for information about physical recovery (33% of studies), psychological support (57%), treatment options (20%), and nutrition guidance (27%).

This review confirms what individual studies have suggested - that despite advances in medical information availability, patients still feel unprepared to make treatment decisions. The breadth of unmet needs identified suggests this is a widespread problem across different healthcare systems and patient populations.

The review only included English-language studies, potentially missing important cultural perspectives on information needs. Also, caregiver needs were underrepresented in the original research, making it harder to understand what support people need. The studies came from different countries with different healthcare systems, which may affect how findings apply to specific situations.

The Bottom Line

Patients and caregivers should actively ask their healthcare team for detailed information about all aspects of treatment, including risks, recovery strategies, and long-term care. Healthcare providers should check in regularly about information needs since these change throughout treatment. Both patients and caregivers should be included in information sharing sessions.

This research is most relevant for head and neck cancer patients, their caregivers, and healthcare teams treating this type of cancer. The findings may also apply to other cancer types where treatment significantly affects daily functions like eating and speaking.

Information needs evolve throughout the cancer journey, so expect your questions and concerns to change from diagnosis through treatment and into survivorship. Regular communication with your healthcare team is important at all stages.

Want to Apply This Research?

  • Track your questions and information needs as they arise, noting which phase of treatment you’re in and what specific topics you want to discuss with your healthcare team
  • Create a list of questions before each medical appointment and ask your healthcare provider about information resources that match your preferred learning style (written materials, videos, apps, etc.)
  • Regularly assess whether you feel confident about upcoming treatment decisions and identify specific information gaps that need to be addressed with your healthcare team

This research review provides general information about patient information needs and should not replace personalized medical advice. Always consult with your healthcare provider about your specific situation and information needs related to head and neck cancer treatment.