Protocol for patient version of the cancer symptom management guideline_Chinese Journal of Clinical Thoracic and Cardiovascular Surgery

Authors：

CHI Jing ^1,2 , ZHANG Lanfang ³ , YANG Tingting ⁴ , XIE Shihui ⁵ , LI Chaixiu ⁶ , DENG Shisi ⁷ , TANG Jianyao ^1,2 , ZHONG Chuhan ^1,2 , GUO Bingqian ^1,2 , REN Qiuyan ^1,2 , LI Yuman ^1,2 , QIN Zhengya ⁸ , ZHAO Ping ^1,2 ,  WU Yanni ¹ , on behalf of the Development Group for the Patient Version of the Cancer Symptom Management Guideline

1. Department of Nursing, Nanfang Hospital, Southern Medical University, Guangzhou, 510515, P. R. China;
2. School of Nursing, Southern Medical University, Guangzhou, 510515, P. R. China;
3. Department of Stomatology, Nanfang Hospital, Southern Medical University, Guangzhou, 510515, P. R. China;
4. Department of Oncology, Nanfang Hospital, Southern Medical University, Guangzhou, 510515, P. R. China;
5. Department of Gynecology, Nanfang Hospital, Southern Medical University, Guangzhou, 510515, P. R. China;
6. Department of Breast and Thyroid Surgery, The Southwest Hospital of Army Medical University, Chongqing, 400038, P. R. China;
7. Department of Radiation Oncology, Affiliated Cancer Hospital of Guangzhou Medical University, Guangzhou, 510095, P. R. China;
8. School of Nursing, Guangzhou University of Chinese Medicine, Guangzhou, 511400, P. R. China;

Corresponding?author：

WU Yanni, Email: yanniwuSMU@126.com

Keywords：

Cancer; symptom management; patient version of guideline; protocol

DOI：

10.7507/1007-4848.202603028

Video：

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Effective symptom management can alleviate the physical and psychological distress experienced by patients with cancer, improve quality of life, and contribute to treatment adherence and improve clinical outcomes. However, most existing guidelines are developed for healthcare professionals, and patients and the public have limited access to standardized and comprehensible guidance on symptom management. To address this gap and to facilitate effective communication and shared decision-making, this study proposes the development of a patient version of the cancer symptom management guideline. The development process will adhere to the methodological framework recommended by the Guidelines International Network and the World Health Organization. The GRADE approach will be employed to assess the certainty of evidence and to formulate recommendations. In addition, the process will be informed by the Appraisal of Guidelines for Research and Evaluation Ⅱ (AGREE Ⅱ) instrument and the Reporting Items for Practice Guidelines in Healthcare-Public or Patient Versions of Guidelines (RIGHT-PVG). This protocol outlines the establishment of the guideline working group, the identification and prioritization of key questions, evidence retrieval and appraisal, and the formulation of recommendations, with the aim of ensuring methodological rigor and transparency in the development of the patient guideline and providing methodological reference for similar guideline initiatives.

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6.	Chung KC, Muthutantri A, Goldsmith GG, et al. Symptom impact and health-related quality of life (HRQoL) assessment by cancer stage: a narrative literature review. BMC Cancer, 2024, 24(1): 884.
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10.	Kumar SK, Callander NS, Adekola K, et al. Multiple myeloma, version 5. 2026, NCCN clinical practice guidelines in oncology. J Natl Compr Canc Netw, 2026, 24(1): e260001.
11.	Thomas T, Clark C, Backler C, et al. ONS/ASCO guideline on the management of antineoplastic extravasation. Clin J Oncol Nurs, 2025, 29(5): 384-399.
12.	Stiefel F, Bourquin C, Salmon P, et al. Communication and support of patients and caregivers in chronic cancer care: ESMO clinical practice guideline. ESMO Open, 2024, 9(7): 103496.
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16.	Wahlen S, Breuing J, Becker M, et al. Use, applicability, and dissemination of patient versions of clinical practice guidelines in oncology in Germany: a qualitative interview study with healthcare providers. BMC Health Serv Res, 2024, 24(1): 272.
17.	Pal A, Arnet I, Elger BS, et al. Practices and barriers in developing and disseminating plain-language resources reporting medical research information: a scoping review. Patient, 2024, 17(5): 493-518.
18.	陳耀龍, 荀楊芹, 李博, 等. 如何制訂患者指南. 協和醫學雜志, 2020, 11(4): 453-458.Chen YL, Xun YQ, Li B, et al. How to develop patient guidelines. Med J Peking Union Med Coll Hosp, 2020, 11(4): 453-458.
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21.	劉輝, 姚媛媛, 羅旭飛, 等. 患者與公眾指南的制訂方法: 進展與案例. 協和醫學雜志, 2023, 14(5): 1091-1095.Liu H, Yao YY, Luo XF, et al. Methods for developing patient and public versions of guidelines: progress and cases. Med J Peking Union Med Coll Hosp, 2023, 14(5): 1091-1095.
22.	National Comprehensive Cancer Network. NCCN guidelines for patients: fatigue and cancer. Version 2024. Plymouth Meeting: NCCN, 2024.
23.	中華醫學會腫瘤學分會. 中華醫學會肺癌臨床診療指南患者版(2024版). 中華腫瘤雜志, 2025, 47(1): 26-38.Oncology Branch of Chinese Medical Association. Patient version of the Chinese Medical Association guideline for clinical diagnosis and treatment of lung cancer (2024 edition). Chin J Oncol, 2025, 47(1): 26-38.
24.	Schünemann HJ, Wiercioch W, Etxeandia I, et al. 指南2.0: 為成功制定指南而系統研發的全面清單 . 中國循證醫學雜志, 2014, 14(9): 1135-1149.Schünemann HJ, Wiercioch W, Etxeandia I, et al. Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise.Chin J Evid Based Med, 2014, 14(9): 1135-1149.
25.	Wang X, Chen Y, Akl EA, et al. The reporting checklist for public versions of guidelines: RIGHT-PVG. Implement Sci, 2021, 16(1): 10.
26.	Gotay CC, Kawamoto CT, Bottomley A, et al. The prognostic significance of patient-reported outcomes in cancer clinical trials. J Clin Oncol, 2008, 26(8): 1355-1363.
27.	Morse JM. Analytic strategies and sample size. Qual Health Res, 2015, 25(10): 1317-1318.
28.	Hollin IL, Paskett J, Schuster ALR, et al. Best-worst scaling and the prioritization of objects in health: a systematic review. Pharmacoeconomics, 2022, 40(9): 883-899.
29.	Speckemeier C, Abels C, H?fer K, et al. A best-worst scaling study of the general population’s preferences for activities in living arrangements for persons with dementia. Patient, 2024, 17(2): 121-131.
30.	Schuster AL, Crossnohere NL, Campoamor NB, et al. The rise of best-worst scaling for prioritization: a transdisciplinary literature review. J Choice Model, 2024, 50: 100466.
31.	Guo B, Tang J, Li W, et al. Using best-worst scaling to identify and prioritize supportive care needs from breast cancer patients' perspective: a mixed-methods study based on an emotional lexicon. Nurs Health Sci, 2025, 27(2): e70163.
32.	Oedingen C, Hua N, MacDonald KV, et al. To test or not to test? study protocol for a best-worst scaling to understand decision-making and preferences for genetic testing in moderate-risk individuals. PLoS One, 2025, 20(12): e0339696.
33.	Brouwers MC, Kho ME, Browman GP, et al. AGREE Ⅱ: advancing guideline development, reporting and evaluation in health care. J Clin Epidemiol, 2010, 63(12): 1308-1311.
34.	Shea BJ, Grimshaw JM, Wells GA, et al. Development of AMSTAR: a measurement tool to assess the methodological quality of systematic reviews. BMC Med Res Methodol, 2007, 7: 10.
35.	Balshem H, Helfand M, Schünemann HJ, et al. GRADE指南: Ⅲ.證據質量分級. 中國循證醫學雜志, 2011, 11(4): 451-455.Balshem H, Helfand M, Schünemann HJ, et al. GRADE guidelines: 3.Rating the quality of evidence. Chin J Evid Based Med, 2011, 11(4): 451-455.
36.	范曼如, 申泉, 王丹琦, 等. 臨床實踐指南制訂方法—形成推薦意見的共識方法學. 中國循證心血管醫學雜志, 2019, 11(6): 647-653.Fan MR, Shen Q, Wang DQ, et al. Methods for developing clinical practice guidelines: consensus methodology for formulating recommendations. Chin J Evid Based Cardiovasc Med, 2019, 11(6): 647-653.

1. Bray F, Laversanne M, Sung H, et al. Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA Cancer J Clin, 2024, 74(3): 229-263.
2. Gon?alves F, Gaudêncio M, Rocha A, et al. A review on the management of symptoms in patients with incurable cancer. Curr Oncol, 2025, 32(8): 433.
3. Bergerot C, Jacobsen PB, Rosa WE, et al. Global unmet psychosocial needs in cancer care: health policy. EClinicalMedicine, 2024, 78: 102942.
4. Geijteman ECT, Kuip EJM, Oskam J, et al. Illness trajectories of incurable solid cancers. BMJ, 2024, 384: e076625.
5. Lizán L, Pérez-Carbonell L, Comellas M. Additional value of patient-reported symptom monitoring in cancer care: a systematic review of the literature. Cancers (Basel), 2021, 13(18): 4615.
6. Chung KC, Muthutantri A, Goldsmith GG, et al. Symptom impact and health-related quality of life (HRQoL) assessment by cancer stage: a narrative literature review. BMC Cancer, 2024, 24(1): 884.
7. Li Y, Li J, Hu X. The effectiveness of symptom management interventions based on electronic patient-reported outcomes (ePROs) for symptom burden, quality of life, and overall survival among patients with cancer: a meta-analysis of randomized controlled trials. Int J Nurs Stud, 2023, 147: 104588.
8. Salmani H, Nasiri S, Alemrajabi M, et al. Advancing patient-centered cancer care: a systematic review of electronic patient-reported outcome measures. Front Rehabil Sci, 2024, 5: 1427712.
9. Rimmer B, Brown MC, Sotire T, et al. Characteristics and components of self-management interventions for improving quality of life in cancer survivors: a systematic review. Cancers (Basel), 2023, 16(1): 14.
10. Kumar SK, Callander NS, Adekola K, et al. Multiple myeloma, version 5. 2026, NCCN clinical practice guidelines in oncology. J Natl Compr Canc Netw, 2026, 24(1): e260001.
11. Thomas T, Clark C, Backler C, et al. ONS/ASCO guideline on the management of antineoplastic extravasation. Clin J Oncol Nurs, 2025, 29(5): 384-399.
12. Stiefel F, Bourquin C, Salmon P, et al. Communication and support of patients and caregivers in chronic cancer care: ESMO clinical practice guideline. ESMO Open, 2024, 9(7): 103496.
13. Johnson LA. Putting evidence into practice. Clin J Oncol Nurs, 2014, 18(Suppl): 2-4.
14. 中國抗癌協會腫瘤護理專業委員會. 中國癌癥癥狀管理實踐指南—皮膚反應. 護士進修雜志, 2019, 34(22): 2017-2024.Oncology Nursing Professional Committee of China Anti-Cancer Association. Chinese practice guidelines for cancer symptom management: skin reactions. J Nurs Train, 2019, 34(22): 2017-2024.
15. Bl?dt S, Erstling S, Becker M, et al. Awareness, use and perception of patient versions of clinical practice guidelines: a national cross-sectional survey among patients with a cancer diagnosis and healthcare providers. BMC Health Serv Res, 2024, 24(1): 1211.
16. Wahlen S, Breuing J, Becker M, et al. Use, applicability, and dissemination of patient versions of clinical practice guidelines in oncology in Germany: a qualitative interview study with healthcare providers. BMC Health Serv Res, 2024, 24(1): 272.
17. Pal A, Arnet I, Elger BS, et al. Practices and barriers in developing and disseminating plain-language resources reporting medical research information: a scoping review. Patient, 2024, 17(5): 493-518.
18. 陳耀龍, 荀楊芹, 李博, 等. 如何制訂患者指南. 協和醫學雜志, 2020, 11(4): 453-458.Chen YL, Xun YQ, Li B, et al. How to develop patient guidelines. Med J Peking Union Med Coll Hosp, 2020, 11(4): 453-458.
19. 王悅, 董興魯, 高胤桐, 等. 患者指南在中醫藥領域的發展策略及價值. 中醫雜志, 2022, 63(10): 923-926.Wang Y, Dong XL, Gao YT, et al. Development strategies and value of patient guidelines in traditional Chinese medicine. J Tradit Chin Med, 2022, 63(10): 923-926.
20. 劉輝. 患者與公眾指南在中國的現狀及制訂實踐. 蘭州: 蘭州大學, 2023.Liu H. The current status and development practice of patient and public versions of guidelines in China. Lanzhou: Lanzhou University, 2023.
21. 劉輝, 姚媛媛, 羅旭飛, 等. 患者與公眾指南的制訂方法: 進展與案例. 協和醫學雜志, 2023, 14(5): 1091-1095.Liu H, Yao YY, Luo XF, et al. Methods for developing patient and public versions of guidelines: progress and cases. Med J Peking Union Med Coll Hosp, 2023, 14(5): 1091-1095.
22. National Comprehensive Cancer Network. NCCN guidelines for patients: fatigue and cancer. Version 2024. Plymouth Meeting: NCCN, 2024.
23. 中華醫學會腫瘤學分會. 中華醫學會肺癌臨床診療指南患者版(2024版). 中華腫瘤雜志, 2025, 47(1): 26-38.Oncology Branch of Chinese Medical Association. Patient version of the Chinese Medical Association guideline for clinical diagnosis and treatment of lung cancer (2024 edition). Chin J Oncol, 2025, 47(1): 26-38.
24. Schünemann HJ, Wiercioch W, Etxeandia I, et al. 指南2.0: 為成功制定指南而系統研發的全面清單 . 中國循證醫學雜志, 2014, 14(9): 1135-1149.Schünemann HJ, Wiercioch W, Etxeandia I, et al. Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise.Chin J Evid Based Med, 2014, 14(9): 1135-1149.
25. Wang X, Chen Y, Akl EA, et al. The reporting checklist for public versions of guidelines: RIGHT-PVG. Implement Sci, 2021, 16(1): 10.
26. Gotay CC, Kawamoto CT, Bottomley A, et al. The prognostic significance of patient-reported outcomes in cancer clinical trials. J Clin Oncol, 2008, 26(8): 1355-1363.
27. Morse JM. Analytic strategies and sample size. Qual Health Res, 2015, 25(10): 1317-1318.
28. Hollin IL, Paskett J, Schuster ALR, et al. Best-worst scaling and the prioritization of objects in health: a systematic review. Pharmacoeconomics, 2022, 40(9): 883-899.
29. Speckemeier C, Abels C, H?fer K, et al. A best-worst scaling study of the general population’s preferences for activities in living arrangements for persons with dementia. Patient, 2024, 17(2): 121-131.
30. Schuster AL, Crossnohere NL, Campoamor NB, et al. The rise of best-worst scaling for prioritization: a transdisciplinary literature review. J Choice Model, 2024, 50: 100466.
31. Guo B, Tang J, Li W, et al. Using best-worst scaling to identify and prioritize supportive care needs from breast cancer patients' perspective: a mixed-methods study based on an emotional lexicon. Nurs Health Sci, 2025, 27(2): e70163.
32. Oedingen C, Hua N, MacDonald KV, et al. To test or not to test? study protocol for a best-worst scaling to understand decision-making and preferences for genetic testing in moderate-risk individuals. PLoS One, 2025, 20(12): e0339696.
33. Brouwers MC, Kho ME, Browman GP, et al. AGREE Ⅱ: advancing guideline development, reporting and evaluation in health care. J Clin Epidemiol, 2010, 63(12): 1308-1311.
34. Shea BJ, Grimshaw JM, Wells GA, et al. Development of AMSTAR: a measurement tool to assess the methodological quality of systematic reviews. BMC Med Res Methodol, 2007, 7: 10.
35. Balshem H, Helfand M, Schünemann HJ, et al. GRADE指南: Ⅲ.證據質量分級. 中國循證醫學雜志, 2011, 11(4): 451-455.Balshem H, Helfand M, Schünemann HJ, et al. GRADE guidelines: 3.Rating the quality of evidence. Chin J Evid Based Med, 2011, 11(4): 451-455.
36. 范曼如, 申泉, 王丹琦, 等. 臨床實踐指南制訂方法—形成推薦意見的共識方法學. 中國循證心血管醫學雜志, 2019, 11(6): 647-653.Fan MR, Shen Q, Wang DQ, et al. Methods for developing clinical practice guidelines: consensus methodology for formulating recommendations. Chin J Evid Based Cardiovasc Med, 2019, 11(6): 647-653.

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