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
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.
References
World Health Organization (2002) National cancer control programs: policies and managerial guidelines. World Health Organization, Geneva
Henoch I, Axelsson B, Bergman B (2010) The Assessment of Quality of life at the End of Life (AQEL) questionnaire: a brief but comprehensive instrument for use in patients with cancer in palliative care. Qual Life Res 19:739–750
Lyons KD, Bakitas M, Hegel MT, Hanscom B, Hull J, Ahles TA (2009) Reliability and validity of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) scale. J Pain Symptom Manag 37:23–32
Cohen SR, Mount BM, Bruera E, Provost M., Rowe J., Tong K. (1997) Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 11:3–20
Sterkenburg CA, King B, Woodward CA (1996) A reliability and validity study of the McMaster Quality of Life Scale (MQLS) for a palliative population. J Palliat Care 12:18–25
Byock IR, Merriman MP (1998) Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index. Palliat Med 12:231–244
Steinhauser KE, Clipp EC, Bosworth HB, Mcneilly M, Christakis NA, Voils CI, Tulsky JA (2004) Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care 2:3–14
Cella DF (1995) Measuring quality of life in palliative care. Semin Oncol 22(2 Suppl. 3):73–81
Patrick DL, Burke LS, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L (2011) Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1—eliciting concepts for a new PRO instrument. Value Health 14:967–977
Patrick DL, Burke LS, Gwaltney CJ, Leidy NK, Martin ML, Molsen E, Ring L (2011) Content validity—establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 2—assessing respondent understanding. Value Health 14:978–988
Lo RSK, Woo J, Zhoc KCH, Li CYP, Yeo W, Johnson P, Mak Y, Lee J (2001) Cross-cultural validation of the McGill quality of life questionnaire in Hong Kong Chinese. Palliat Med 15:387–397
Tsujikawa MA, Yokoyama KB, Urakawa KC, Onishi KA (2009) Reliability and validity of Japanese version of the McGill Quality of Life Questionnaire assessed by application in palliative care wards. Palliat Med 23:659–664
Kim KU, Yoon S-J, Lee J, Ahn H-S, Park H-J, Lee S-I, Jo M-W (2006) Validation of the Korean version of the McMaster Quality of Life Scale in terminal cancer patients. J Palliat Care 22:40–45
Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K (2010) Pro-development: rigorous qualitative research as the crucial foundation. Qual Life Res 19:1087–1096
Denzin NK, Lincoln YS (2005) Paradigms and perspectives in contention. In: Denzin NK & Lincoln YS (eds) The SAGE handbook of qualitative research, 3rd edn. Sage, Thousand Oaks, pp. 153–189.
Patton MQ (2002) Qualitative research and evaluation methods, 3rd edn. Sage, Thousand Oaks
Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101
Charmaz K (2006) Constructing grounded theory: a practical guide through qualitative analysis. Sage, London
Edwards A, Pang N, Shiu V, Chan C (2010) The understanding of spirituality and the potential role of spiritual care in end-of-life and palliative care: a meta-study of qualitative research. Palliat Med 24:753–770
Mehta A, Chan LS (2008) Understanding of the concept of “total pain”: a prerequisite for pain control. J Hosp Palliat Nurs 10:26–32
Maciocia G (2015) The foundations of Chinese medicine: a comprehensive text. Elsevier, Amsterdam
Chan CLW, Palley HA (2005) The use of traditional Chinese culture values in social work health care related interventions in Hong Kong. Health Soc Work 30:76–79
Fukuhara S, Ware Jr JE, Kosinski M, Gandek B (1998) Psychometric and clinical tests of validity of the Japanese SF-36 health survey. J Clin Epidemiol 51:1045–1053
Thumboo J, Fong KY, Machin D, Chan SP, Leong KH, Feng PH, Thio ST, Boey ML (2001) A community-based study of scaling assumptions and construct validity of the English (UK) and Chinese (HK) SF-36 in Singapore. Qual Life Res 10:175–188
Tseng HM, Lu JFR, Gandek B (2003) Cultural issues in using the SF-36 health survey in Asia: Results from Taiwan. Health Qual Life Outcomes 1:72–80
Lee GL, Fan GKT, Chan SWC (2015) Validation of Chinese and English versions of the Holistic Well-being Scale in patients with cancer. Support Care Cancer. Article first published online on Apr. 17 2015. DOI: 10.1007/s00520-015-2736-3
Ow R, Katz D (1999) Family secrets and the disclosure of distressful information in Chinese families. Fam Soc 80:620–628
Kreling B, Selsky C, Perret-Gentil P, Huerta EE, Mandelblatt JS, For the Latin American Cancer Research Coalition (2010) “The worst thing about hospice is that they talk about death”: contrasting hospice decisions and experience among immigrant Central and South American Latinos to US-born White, non-Latino cancer caregivers. Palliat Med 24:427–434
Lee GL, Ow R, Akhileswaran R, Goh CR (2013) Exploring the experience of dignified palliative care in patients with advanced cancer and families: a feasibility study in Singapore. Prog Palliat Care 21:131–139
Ho DY (1995) Selfhood and identity in Confucianism, Taoism, Buddhism, and Hinduism: Contrasts with the West. J Theory Soc Behav 25:115–139
Wong PTP, Reker GT, Gesser G (1994) Death attitude profile-revised: a multidimensional measure of attitudes towards death. In: RA Neimeyer (ed) Death anxiety handbook: Research, instrumentation, and application. Taylor & Francis, Philadelphia, pp. 121–148
World Health Organization (2013) Global Health Observatory Data Repository—health financing: health expenditure ratios by country. http://apps.who.int/gho/data/node.main.75. Accessed 13 March 2014
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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Appendix A
Appendix A
Focus group/interview guide on cancer-related health-related quality of life
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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)
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2.
What is bothering you most currently?
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3.
Can you share with me more about your experience with the doctor or other health professionals?
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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)
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5.
Looking back, if there was one thing that could improve your quality of life, what would that be?
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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