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Understanding domains of health-related quality of life concerns of Singapore Chinese patients with advanced cancer: a qualitative analysis

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Abstract

Purpose

Quality of life concerns in patients with advanced diseases might be different from other patients and are shaped by sociocultural context. The objective of this qualitative study was to identify domains and themes of health-related quality of life (HRQoL) that Chinese patients with advanced cancer in Singapore considered relevant and important.

Methods

English- and Chinese-speaking patients with advanced solid cancer were recruited from a tertiary cancer center and a community-based hospice for in-depth interview or focused group discussion. Thematic analysis was used to identify subthemes, themes, and domains from the transcripts.

Results

Forty-six ethnic Chinese (aged 26–86, 48 % male) participated in the study. Six domains of HRQoL concerns were identified: pain and suffering, physical health, social health, mental health, financial well-being, and spiritual health. Pain and suffering are not limited to the physical domain, reflecting the multidimensional nature of this concept. Pain and suffering must also be understood within the cultural context. Healthcare relations (i.e., social health), existential well-being and religious well-being (i.e., spiritual health), and suffering (i.e., pain and suffering) are not fully captured in the existing HRQoL instruments. In addition, financial issues and the practice of secrecy in interpersonal relationships emerged as unique features possibly arising from our sociocultural context and healthcare financing landscape.

Conclusion

Socioculturally specific issues not measured by the existing HRQoL instruments for use in patients with advanced cancers or terminal diseases were found in our study. These are non-physical pain and suffering, meaning of illness, meaning of death, financial issues, and practice of secrecy in interpersonal relationships.

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Notes

  1. The authors have newly coined a specific patient’s illness experience as “welding pain and suffering syndrome” when patients’ self-report of their illness experience, as expressed by the Chinese terminology tong-ku, denotes an expression of their inner heartfelt pain and suffering. It is the fusion (welding) of existential, emotional, and physical expression of pain and suffering that forms a distinct clinical landscape (syndrome). From a medical perspective, syndrome suggests a combination of symptoms resulting from a single cause or so commonly occurring together as to constitute a distinct clinical picture.

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Acknowledgments

The authors thank the staff members at National Cancer Centre Singapore (NCCS) and HCA Hospice Care for facilitating the study recruitment, Ms. Lim Siao Ee, Ms. Josephine Chua, Mr. Matthew Ng, Ms. Koh Li Lian, and Mr. Huang Kai Quan for moderating the sessions, and Ms. Angela Yap, Ms. Tan Si Jia, Ms. Ng Khai Yin, Ms. Ling Jia Ying, Ms. Florence Ho, and Ms. Hoe Xin Huan for coding of the transcripts.

Funding

This work was supported in part by the Duke-NUS Signature Research Program funded by the Agency for Science, Technology and Research (A*STAR), Singapore, and the Ministry of Health, Singapore, and in part by the Lien Center for Palliative Care Grant (LCPC(ER)/2012/0003).

Conflict of interest

The authors declare that they have no competing interests.

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Corresponding author

Correspondence to GL Lee.

Appendix A

Appendix A

Focus group/interview guide on cancer-related health-related quality of life

  1. 1.

    Can you please share with me how cancer or cancer treatment has affected your life generally? (Probes: physical, social, psycho-emotional, spiritual, financial, and cognitive aspects)

  2. 2.

    What is bothering you most currently?

  3. 3.

    Can you share with me more about your experience with the doctor or other health professionals?

  4. 4.

    Now, I would like to find out what do you like best about your life? (Probes: physical, social, psycho-emotional, spiritual, financial, and cognitive aspects)

  5. 5.

    Looking back, if there was one thing that could improve your quality of life, what would that be?

  6. 6.

    Did the discussion miss out any important areas where your life had been affected by the illness and that you would like to share and discuss?

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Lee, G., Pang, G., Akhileswaran, R. et al. Understanding domains of health-related quality of life concerns of Singapore Chinese patients with advanced cancer: a qualitative analysis. Support Care Cancer 24, 1107–1118 (2016). https://doi.org/10.1007/s00520-015-2886-3

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  • DOI: https://doi.org/10.1007/s00520-015-2886-3

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