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China Health Related Outcomes Measures (CHROME): development of a descriptive system to support cardiovascular disease specific preference-based measure for the Chinese population

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Abstract

Purpose

Preference-based measures have been increasingly recommended to measure health outcomes for economic evaluation. However, none of existing cardiovascular disease (CVD)-specific health-related quality of life (HRQoL) instruments are preference-based. This study aimed to develop the descriptive system of preference-based HRQoL instrument for Chinese patients with CVDs under the Initiative of China Health Related Outcomes Measures (CHROME).

Methods

Qualitative face-to-face interviews were conducted with Chinese patients with CVDs. Content analysis was employed to generate candidate items for the instrument. Then expert consultation and cognitive debriefing interviews were conducted to guide further selection and revision of the items.

Results

We interviewed 127 CVD patients with 67.7% being male and 63.8% living in the urban area. A hierarchical code book comprised of four themes, 20 categories, 62 sub-categories, and 207 codes, was developed. Candidate items were selected based on the criteria set by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) methodology and ISPOR PRO guidance. An online survey and meeting with an expert advisory panel (n = 15) followed by cognitive debriefing interviews with 20 patients and 13 physicians were conducted to further select and revise the candidate items. The descriptive system of CHROME-CVD consists of 14 items, namely frequency and severity of chest pain, chest tightness, palpitation, shortness of breath, dizziness, fatigue, appetite, sleeping, mobility, daily activities, depression, worry, and social relationship. Four or five level responses were selected based on cognitive debriefing results to each item.

Conclusion

The current study developed the descriptive system (items and response options) of CHROME-CVD, the future CVD-specific preference-based HRQoL instrument for Chinese CVD patients.

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Acknowledgements

We would like to acknowledge Expert Advisory Panel Members (listed in alphabetical order), Drs. Gang Chen (Monash University, Australia), Haijing Guan (Beijing Tiantan Hospital, Capital Medical University, China), Yawen Jiang (Sun Yat-sen University, China), Xuejing Jin (Beijing University of Chinese Medicine, China), Hongchao Li (China Pharmaceutical University, China), Shunping Li (Shandong University, China), Bin Wu (Renji Hospital, School of Medicine, Shanghai Jiaotong University, China), Hongyan Wu (Guizhou Medical University, China), Hongwei Yang (China National Health Development Research Center, China), Lian Yang (Chengdu University of Traditional Chinese Medicine, China), Jun Zhang (Liaoning Institute of Basic Medicine, China), Tiantian Zhang (Jinan University, China), Yun Zhang (Fuwai Hospital, The Chinese Academy of Medical Sciences and Peking Union Medical College, China), and Wentao Zhu (Beijing University of Chinese Medicine, China), for reviewing, revising and giving suggestions for this instrument. Special thanks also go to all patients and physicians who agreed to participate in the qualitative interviews and cognitive debriefings.

Funding

This study was funded by the China National Health Development Research Center (No. 2019-12).

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Authors and Affiliations

  1. Department of Health Technology Assessment, China National Health Development Research Center, Beijing, China

    Xue Li, Kun Zhao & Wenjun Wang

  2. Department of Health Research Methods, Evidence and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada

    Xue Li, Shitong Xie & Feng Xie

  3. Vanke School of Public Health, Tsinghua University, Beijing, China

    Kun Zhao

  4. China Alliance for Rare Disease, Beijing, China

    Kexin Li

  5. Emergency and Critical Care Center, Beijing Anzhen Hospital, Capital Medical University, Beijing, China

    Siting Feng

  6. School of Pharmaceutical Science and Technology, Tianjin University, Tianjin, China

    Jing Wu, Xiaoning He & Shitong Xie

  7. Center for Social Science Survey and Data, Tianjin University, Tianjin, China

    Jing Wu & Xiaoning He

  8. Liaoning Institute of Basic Medicine, Liaoning, China

    Hao Hu

  9. National Center for Cardiovascular Diseases, Beijing, China

    Jing Fan

  10. Fuwai Hospital, Chinese Academy of Medical Sciences, Beijing, China

    Jing Fan

  11. Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, ON, Canada

    Feng Xie

  12. China National Health Development Research Center, 9 Chegongzhuang Street, Xicheng District, Beijing, 100444, China

    Qiang Fu

Authors
  1. Xue Li
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  2. Kun Zhao
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  6. Jing Wu
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  7. Xiaoning He
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  8. Shitong Xie
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  9. Hao Hu
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  11. Qiang Fu
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  12. Feng Xie
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Consortia

For the CHROME Study Group

Contributions

Concept and design: XL, KZ, QF and FX. Acquisition of data: XL, KL, WW, XH, and HH. Analysis and interpretation of data: XL, KL, WW, SF, JW, HH, KZ, and FX. Drafting of the manuscript: XL, KL, and FX. Statistical analysis: XL, KL, SX and FX. Obtaining funding: XL, KZ, and FX. Supervision: XL, KZ, JF, QF and FX. All authors critically reviewed previous versions of the manuscript and approved the final manuscript.

Corresponding authors

Correspondence to Qiang Fu or Feng Xie.

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Conflict of interest

All authors declare that they have no conflict of interest or financial ties to disclose.

Role of the funder/sponsor

The funder had roles in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Ethical approval

The study was granted ethical approval by the Ethics Committee at Liaoning Institute of Basic Medicine (Reference No. 2020-02-5), and was conducted in accordance with the Declaration of Helsinki.

Informed consent

Informed consent was obtained from all individual participants included in the study. Participants were informed about their freedom of refusal. Anonymity and confidentiality were maintained throughout the research process.

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Li, X., Zhao, K., Li, K. et al. China Health Related Outcomes Measures (CHROME): development of a descriptive system to support cardiovascular disease specific preference-based measure for the Chinese population. Qual Life Res 32, 2463–2476 (2023). https://doi.org/10.1007/s11136-023-03416-y

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  • DOI: https://doi.org/10.1007/s11136-023-03416-y

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