Information Needs and Communication Preferences of Adult Thyroid Cancer Patients: Experience From a Lower Middle-Income Country in South Asia
Colambage Dona Gayashani Prabodhya, Maheeka Seneviwickrama, Sriyani Ranasinghe, Yenuli BawanyaPURPOSE
Cancer patients frequently experience difficulties in identifying and accessing appropriate information at different stages of their illness. This aspect is under explored in lower income country settings. Our study was conducted to examine the information needs, information-seeking behaviour, and the aspects of the information provision most valued by the adult thyroid cancer patients.
METHODS
This qualitative study was conducted at the National Cancer Institute, the national level cancer referral centre in Sri Lanka, among histologically confirmed adult thyroid cancer patients. Adult patients aged 18 years or older with histologically confirmed thyroid cancer, representing different stages of the disease and treatment trajectory (newly diagnosed, undergoing active treatment, and long-term follow-up survivors), were included in the study. Patients who are critically ill, or having secondary thyroid cancer, or conditions that may significantly affect cognitive ability, such as brain metastases, were excluded. Data were gathered through in-depth interviews conducted in Sinhala, the local language, which were audio recorded and transcribed verbatim and then translated to English. Data collection was continued until data saturation was achieved (n = 23). Data was manually analyzed using thematic analysis.
RESULTS
The study included 23 thyroid cancer patients, comprising 19 females and 4 males. The majority (52%, n = 12) of participants were between 42-60 years of age. Five interconnected themes related to the information needs emerged: disease uncertainty, information seeking pathways, evolving needs, communication quality, and information gaps. Most patients demonstrated lack of prior knowledge of the disease, leading to delayed health seeking. Post-diagnosis, patients initially experienced fear and uncertainty, on seriousness of the disease, and possible complications. However, with empathetic clinician interactions, this emotional response shifted toward acceptance. Doctors were the primary and most trusted source of information. However, patients struggled to understand when the physicians explained the situation using medical terms. Patients preferred practical, future-oriented information delivered through personalized, face-to-face communication using simple language. Some valued supplementary materials.
CONCLUSION
Information needs of patients are dynamic. Tailored, simple, and empathetic patient-centered communication strategies are essential to improve understanding, support decision-making, and enhance the overall care experience.