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Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study

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Abstract

Breast cancer survivors on adjuvant endocrine therapy (AET) have distinct information-seeking experience compared to those in the diagnosis and intensive treatment phase. This study aimed to understand the challenges in obtaining and seeking information among Malaysian breast cancer survivors. We conducted semi-structured, one-to-one interviews among patients using AET from two hospitals and a local cancer organization. Interviews were conducted until theme saturation was achieved (N = 25). Interviews were de-identified, transcribed verbatim, and analysed using thematic analysis. To ensure rigor, coding was conducted through regular discussions between two researchers and the findings were shared with several participants after analysis was completed. Three main themes were identified: limitations in the healthcare system, pitfalls of seeking information online, and limited information from local sources. The participants perceived that their information needs were not met by their healthcare providers and sought information on the Internet to complement their information needs. However, they were faced with risks of misinformation, information overload, and unethical promotion of health products. Those with limited English proficiency had difficulties in accessing quality information, and suggested that there should be more content created by local health advocates in local languages, with information that is tailored for local cultures. As the Internet has become an important medium of health education, healthcare providers and patients should be equipped with the skills to share and search for information online. Digital health literacy needs to be incorporated in patient education modules to create a more informed and empowered patient community.

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Acknowledgements

We would like to thank the Institut Kanser Negara, Hospital Canselor Tuanku Muhriz, and National Cancer Society Malaysia for their assistance during data collection. We would like to thank the Director General of Health Malaysia for his permission to publish this article.

Funding

This work was supported by the University Research Grant, Universiti Kebangsaan Malaysia (grant number GUP-2020-004).

Author information

Authors and Affiliations

  1. Centre for Quality Management of Medicines, Faculty of Pharmacy, Universiti Kebangsaan Malaysia, Jalan Raja Muda Abdul Aziz, 50300, Kuala Lumpur, Malaysia

    Izzati Yussof, Noraida Mohamed Shah, Ernieda Hatah & Nor Asyikin Mohd Tahir

  2. Pharmaceutical Services Division, Kuala Lumpur & Putrajaya Health Department, Ministry of Health, Kuala Lumpur, Malaysia

    Izzati Yussof

  3. Radiotherapy and Oncology Department, Hospital Canselor Tuanku Muhriz, Faculty of Medicine, Universiti Kebangsaan Malaysia, Kuala Lumpur, Malaysia

    Nur Fa’izah Ab Muin

  4. Pharmacy Department, Institut Kanser Negara, Putrajaya, Malaysia

    Sarahfarina Abd. Rahim

  5. National Cancer Society Malaysia, Kuala Lumpur, Malaysia

    Kavinash Loganathan & Murallitharan Munisamy

Authors
  1. Izzati Yussof
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  2. Noraida Mohamed Shah
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  3. Nur Fa’izah Ab Muin
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  4. Sarahfarina Abd. Rahim
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  5. Ernieda Hatah
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  6. Nor Asyikin Mohd Tahir
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  7. Kavinash Loganathan
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  8. Murallitharan Munisamy
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Contributions

Conceptualization: Izzati Yussof, Noraida Mohamed Shah; methodology: Izzati Yussof, Noraida Mohamed Shah, Nur Fa’izah Ab Muin, Sarahfarina Abd. Rahim, Ernieda Hatah, Nor Asyikin Mohd Tahir; formal analysis and investigation: Izzati Yussof, Noraida Mohamed Shah, Nur Fa’izah Ab Muin, Sarahfarina Abd. Rahim, Ernieda Hatah, Nor Asyikin Mohd Tahir; writing — original draft preparation: Izzati Yussof; writing — review and editing: Noraida Mohamed Shah, Nur Fa’izah Ab Muin, Sarahfarina Abd. Rahim, Ernieda Hatah, Nor Asyikin Mohd Tahir, Kavinash Loganathan, Murallitharan Munisamy; funding acquisition: Noraida Mohamed Shah; resource: Nur Fa’izah Ab Muin, Sarahfarina Abd. Rahim, Kavinash Loganathan, Murallitharan Munisamy; supervision: Noraida Mohamed Shah.

Corresponding author

Correspondence to Noraida Mohamed Shah.

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Disclaimer

The funders played no role in study design, collection, analysis, interpretation of data, or writing of the report.

Ethics Approval

This study was performed in line with the principles of the Declaration of Helsinki. Permission to conduct this study was obtained from the Ministry of Health Malaysia (NMRR ID-22-00345-VIG) and Universiti Kebangsaan Malaysia (UKM) Research Ethics Committee (JEP-2022-240).

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Written informed consent was obtained from all individual participants prior to the interview.

Competing Interests

The authors declare no competing interests.

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Yussof, I., Mohamed Shah, N., Ab Muin, N. et al. Challenges in Obtaining and Seeking Information Among Breast Cancer Survivors in an Asian Country: a Qualitative Study. J Canc Educ (2024). https://doi.org/10.1007/s13187-024-02421-0

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