ObjectivesTo investigate the awareness and knowledge of Chinese guideline developers on the patient version of guidelines (PVG).MethodsA questionnaire was developed and distributed to participants of the guideline development workshop on the " 2017 Chinese Medical Doctor Association Annual Conference on Evidence-Based Medicine & Gansu Medical Doctor Association/ Gansu Medical Association Annual Conference on Evidence-Based Medicine”, and guideline developers in Shenzhen, Guangzhou, Xi’an, Beijing and other places were investigated through field surveys. The questionnaire included ten questions centred on respondents’ awareness and their views on the development of PVG. After the invalid questionnaire was excluded, Excel 2013 software was used for data entry, and SPSS 19.0 software was used for data analysis.Results150 questionnaires were distributed and 107 (71.3%) were collected, from which 90 (60.0%) questionnaires with complete response were analyzed. For the awareness of PVG: 30.0% of respondents chose " just know it without more knowledge”, 34.4% chose " never heard of”. The awareness was not associated with educational or departmental background, majors and regions (P>0.05). For opinions on PVG and its development process: 86.7% of the respondents thought PVG is necessary, 90% thought the presentation of PVG needs to follow reporting standards, and 45.6% thought the primary barrier of the development of PVG is lack of cognition.ConclusionsResearch work on PVGs is at an initial stage in China. The awareness among Chinese guideline developers and relevant researchers is lacking and the development methodology requires further exploration. Carrying out research relevant to PVG can promote its development and application in China, so as to improve the clinical practice.
There is an increase in published studies relevant to the development of patient version of guidelines (PVGs). We reviewed, summarised and analysed the current developments in this field, with the aim of informing domestic scholars of the factors to consider when developing quality PVGs. We proposed three recommendations: (1) the concept of patient guidelines needs to be better defined; (2) a platform for the dissemination of PVGs should be established to support their implementation; and (3) a standardised PVGs development methodology should be developed to ensure the quality of the PVGs.
ObjectiveTo develop a patient version of guideline for non-pharmacological interventions in breast cancer, aiming to support patients decision-making and self-management. MethodsAdhering to international guidelines and the World Health Organization's methodology for guideline development, health issues from the patient perspective were identified through sentiment dictionaries, in-depth individual interviews, and clinical surveys. Official websites of guidelines, professional association websites and comprehensive databases were systematically searched. The quality of evidence was assessed by the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. Resource utilization was assessed by integrating health economics evidence, and preliminary recommendations were formulated using an Evidence-to-Decision (EtD) framework. Subsequently, two rounds of online consensus meetings and one Delphi round were conducted to refine and finalize the recommendations, resulting in the final patient guideline. ResultsThe patient and public version of guideline for non-pharmacological interventions in breast cancer encompassed three modules: disease knowledge, symptoms, and psychological well-being. It covered core content, including disease awareness, wound recovery, dietary nutrition, reproductive health, symptom management, and psychological adjustment. ConclusionDeveloped from the patient perspective and based on rigorous methodological processes, the guideline formulated evidence - based recommendations, which serve as a reference for breast cancer patients in decision-making and self-management.