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Published on: April 22, 2019
Information Perception and Unmet Needs in Cancer Patients Beginning Systemic Therapy: Needs for Patient Education
Inês Dunões1, Paulo Infante2, Francisco Trinca3
1Department of Oncology, Local Health Unit of Alentejo Central (Unidade Local de Saúde do Alentejo Central - ULSAC), Évora, Portugal. inesdunoes@hotmail.com.
Abstract:
Cancer patients frequently report unmet informational needs at the start of systemic therapy, a period marked by uncertainty and high cognitive and emotional burden. This study examined patients’ perceptions of information received using the EORTC QLQ-INFO25, explored sociodemographic and clinical predictors, quantified the desire for additional information and identified latent profiles of informational experience. In a cross-sectional sample of 114 adults initiating intravenous treatment, mean information scores (0–100 scale) were highest for medical tests (68.7) and disease (63.2), intermediate for treatments (59.3), and lowest for services/support (43.3). Single-item scores were lowest for psychological support (46.2) and different places of care (47.1), whereas usefulness of the information was comparatively high (71.8). Overall, 47% of participants reported wishing to receive more information. In multivariable analysis, time since diagnosis (per 30-day increment) was the only statistically significant predictor of this outcome (p < 0.05), with earlier assessment associated with greater informational demand. Other predictors showed small and non-significant effects, suggesting subtle variation across patient groups. Clustering analysis identified three informational profiles (high 13.2%, intermediate 71.1%, low 15.8%). The low-information group comprised older, clinically more fragile and more geographically peripheral patients, and two-thirds (66.7%) of this group expressed unmet informational needs. These results highlight persistent deficits in practical and supportive information at the start of treatment and emphasize the value of personalizing education according to distinct patient profiles. Enhancing early informational support is essential, and multidisciplinary teams play a vital role in offering comprehensive, clear, and accessible guidance that genuinely supports patients and their families throughout the cancer care pathway.
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