Information needs during cancer care: Qualitative research with locally advanced cervical cancer patients in Brazil, China, Germany, & the US

• Published in: Gynecologic oncology reports 2024-02, Vol.51, p.101321, Article 101321
• Main Authors: Szamreta, Elizabeth A., Mulvihill, Emily, Aguinaga, Katherine, Amos, Kaitlan, Zannit, Heather, Salani, Ritu
• Format: Article
• Language: English
• Subjects: Information needs; Locally advanced cervical cancer; Patient engagement; Qualitative research; Research Report
• ISSN: 2352-5789; 2352-5789
• DOI: 10.1016/j.gore.2023.101321

•LACC patients sought information about treatment options, side effects, disease causes/symptoms, and patient experiences.•One-third of LACC patients sought a second opinion to confirm their diagnosis or to find a more favorable physician.•Challenges in information searches included use of medical jargon, finding relevant information, and assessing credibility.•Physicians fostered confidence in treatment plans by addressing patients’ concerns and offering understandable information.•Most LACC patients felt knowledgeable to participate in treatment decisions and felt engaged in shared decision-making. This study aimed to identify the information needs and factors for making informed treatment decisions among a diverse group of locally advanced cervical cancer (LACC) patients. Semi-structured interviews were conducted with LACC patients of diverse demographic and socioeconomic backgrounds within two years of their cancer diagnosis. Trained moderators asked open-ended questions about patients’ cancer journeys. Transcripts were analyzed using NVivo software to identify emergent themes. In 2022, 92 LACC patients in the United States (n = 26), Brazil (n = 25), China (n = 25), and Germany (n = 16) participated in the study. Physicians were valued sources of information, providing patients with details on prognosis, treatment options, and side effects. While most patients trusted their physicians, one-third sought a second opinion to validate their diagnosis or find a more trusted physician. Most patients conducted their own research on treatment options, side effects, causes of LACC, symptoms, and others’ experiences. Challenges to information searches included understanding medical terms, finding relevant information, and evaluating source credibility. Overall, patients felt knowledgeable enough to participate in treatment decisions, either by accepting the recommended treatment or collaborating with their physicians. Nearly one-third of patients desired a more significant role in the decision-making process. This study highlights the importance of physicians providing LACC patients comprehensive and understandable information, while involving them in the decision-making process. Understanding LACC patients’ motivations to seek information and their willingness to actively engage in treatment decisions can lead to improved patient satisfaction in their cancer care.