Information needs during cancer care: qualitative research with advanced cervical cancer patients in Brazil, China, Germany, and the United States

Abstract

Objective

Information needs for advanced cervical cancer patients have not been well studied. Our aim was to understand key drivers and barriers to seeking information, the best means of information delivery, and how this information affects the patient’s treatment experience.

Methods

This was a qualitative study among international cohorts to assess the information needs of adult patients diagnosed with persistent, recurrent, or metastatic cervical cancer. Semi-structured interviews were held with patients of diverse demographic and socioeconomic backgrounds within two years of obtaining their cancer diagnosis. NVivo qualitative analysis software was used to identify themes that emerged from the data.

Results

In 2021, we interviewed 98 patients from Brazil (n = 25), China (n = 25), Germany (n = 20), and the United States (US) (n = 28) with a mean age ranging from 38.6 to 54.2 years. Becoming aware of treatment options and understanding prognosis were key motivators for seeking cervical cancer information. This information made patients feel more informed and confident in their care. Physicians were the preferred distributor of information due to their credibility and ability to only share information pertinent to the patient’s specific stage and type of cancer. The primary challenges for seeking information were finding trustworthy resources, feeling overwhelmed with negative information, and understanding the content and relevance to their diagnosis.

Conclusions

There is an unmet need for readily-found information on advanced cervical cancer that is credible, easy to understand, individualized, and stage-specific. Providing patients with this information could help them achieve a more satisfying treatment experience.