As subjects in drug clinical trials and participants in medical practice, patients can best understand their own conditions and needs. With this in mind, the FDA proposed "patient-centered drug discovery" and issued a set of guidelines to incorporate patient experiences, perspectives, needs, and preferences into the drug development and evaluation process. Guideline (2), methods for identifying important patient information, mainly describes methods and precautions for collecting and extracting patient experience data. This paper will focus on the characteristics, common methods and precautions of qualitative, quantitative and mixed research methods in the collection of patient experience data, in order to provide help for the comprehensive collection of patient experience data.
ObjectiveTo explore the real experiences of women of childbearing age with epilepsy during their reproductive decision-making process, and to provide a basis for clinical practitioners in managing the reproductive decision-making of this group of women and implementing decision support. MethodsSixteen women of childbearing age with epilepsy who were hospitalized in the Epilepsy Center of Beijing Tiantan Hospital, Capital Medical Universityi in Beijing from April 2024 to June 2024 were selected through purposive sampling. The Colaizzi phenomenological data analysis method was employed, and the data were organized and analyzed with the aid of Nvivo 11.0 software to extract themes. ResultsThree themes and eight sub-themes were extracted: The majority of patients had reproductive demands (personal role expectations, family and social pressure), Uncertainties in reproductive behaviors and outcomes (uncertainties in the pregnancy process caused by the disease, uncertainties in the reproductive outcome caused by the disease), and Encountering reproductive decision-making predicaments (lack of professional knowledge, conflicting information from different channels, multiple factors influencing reproductive decision-making, and various negative experiences associated with decision-making). ConclusionThe majority of women of childbearing age with epilepsy have reproductive needs and encounter decision-making predicaments. Medical staff should pay attention to their true experiences, offer adequate support and assistance, and help patients extricate themselves from the decision-making predicament to make scientific and rational decisions.
Objective To construct an information hospital service system and discuss the application effect of information construction in the hospital service center. Methods Patients admitted to West China Hospital of Sichuan University between June 2022 and January 2023 were selected. We innovatively practiced intelligent safety gate, self-appointment admission registration, pre-hospital examination and advance migration, pre-hospital health education, an age-appropriate transformation of information service, and other information service measures to investigate the medical experience of patients, and compared patients’ satisfaction with medical treatment under four admission management methods (Huayitong APP, WeChat, self-service machine, and manual management). Results A total of 1452 patients were surveyed. The overall satisfaction score for medical treatment of patients was (4.98±0.04) points. Among them, Huayitong APP was (4.99±0.03) points, WeChat was (4.98±0.13) points, self-service machine was (4.97±0.05) points, and manual treatment was (4.92±0.11) points. There was a statistically significant difference between groups in overall satisfaction with different admission procedures (F=68.582, P<0.001). Since the information construction of the hospital admission service center was carried out, the average time of admission was (12.4±2.3) minutes, and 89.4% (1 298/1 452) of patients thought the time of admission was ideal. Conclusions The information construction of a hospital admission service center can effectively improve patients’ medical experience and enhance patient satisfaction. In the future, it is necessary to explore the influencing factors of patients’ satisfaction with information construction, and constantly improve and upgrade the information construction of hospital admission service centers.
Objective To explore the construction and application of a new follow-up visit model in the context of Internet hospital consultation, aiming to create a novel follow-up visit model that integrates precise identification of follow-up patients, messages of follow-up reminders, online free follow-up visits, and promotional activities. Methods Satisfaction surveys were conducted among outpatient patients and doctors at Jintang County First People’s Hospital from July 2023 to June 2024. Patients and doctors were divided into two groups based on whether the online free follow-up visit program had been implemented: the pre-implementation group (July to December 2023) and the post-implementation group (January to June 2024). The satisfaction levels of patients and doctors before and after the implementation were compared and analyzed. Results A total of 17 831 patient visits and 801 doctor visits were included. Since its launch, WeChat messages had been pushed to all outpatient patients, and both WeChat and SMS messages had been pushed to patients in surgical departments. The average waiting time for outpatient visits in January-June 2024 was shortened by 2 minutes compared with the same period last year (January-June 2023). The hospital’s Case Mix Index increased by 3.7%, and the surgical volume increased by 7.5%. After the launch of the Internet hospital, both patient and doctor satisfaction improved. Conclusion The new follow-up visit model of the Internet hospital represents an important initiative in the digital transformation of hospitals and holds value and significance for promotion in more county-level medical institutions.
In the context of informatization and digitization, medical big data has become crucial for promoting medical research and technological innovation, posing unprecedented challenges to the construction and operation of big data research supercomputing platforms. This article systematically elaborates on the construction plan of the scientific research supercomputing platform of the West China Biomedical Big Data Center of Sichuan University, as well as the management and service models that support data research. It also compares the scale and operation of existing scientific research supercomputing platforms at home and abroad, providing a reference for the construction and management of medical big data scientific research supercomputing platforms in other institutions.
To understand the current situation of community epilepsy management in China, summarize the experience of international community epilepsy management, and provide reference for strengthening community epilepsy management in China. Summarize the current situation of epilepsy development in China, summarize and analyze the international experience of community epilepsy management in the United States, Australia, Britain and other countries, as well as the reference significance for domestic community epilepsy management. According to the evaluation criteria of community epilepsy management, it is suggested that the Chinese government should increase its support, formulate various strategic objectives, strengthen publicity and health education, improve patients' self-management support, explore the prevention and control mode of promoting epilepsy management in urban and rural communities, strengthen the training of medical service teams and design a reasonable referral system.
In 2021, West China Hospital of Sichuan University established a rare disease diagnosis and treatment and research center. The center adopts the rare disease management model of “one cohesion + four integration”, condenses the core of management, integrates clinical resources, regional alliance resources, training resources and research resources, and explores solutions for all-round services for patients with rare diseases. This article aims to explore the rare disease management model of regional central hospitals and introduces the above-mentioned rare disease management model. The purpose of this article is to promote this model, focus on the advantages of clinical departments and research institutes (offices), increase regional integration, give play to the synergy of regional alliances in clinical diagnosis and treatment and personnel training, and use international cooperation as an opportunity to promote breakthroughs in new drugs and technologies for rare diseases to benefit patients with rare diseases in China.
ObjectiveTo explore the psychological process and needs of the second victims of medical adverse events after the occurrence of adverse events, so as to provide reference for the psychological intervention strategies of medical institutions for the second victims of medical adverse events.MethodsThe second victims of medical adverse events in the First People’s Hospital of Ziyang were selected from April to July 2019. Qualitative research method was used to conduct semi-structured in-depth interviews with the second victims. Colaizzi method was used to analyze the transcripts through reading and rereading, coding, and thematizing. ResultsA total of 22 second victims of medical adverse events were interviewed. The second victims of medical adverse events experienced negative emotional experience, and the desire to seek emotional support was urgent. The psychological process of the second victims of medical adverse events mainly involved five stages: fear, anxiety, depression, guilt and recovery. Emotional support hada positive effect on regression. Conversely, negative or lack of emotional support had a negative effect on regression. ConclusionsThe emotional experience of the second victims of medical adverse events is relatively staged, and the recovery and regression are greatly affected by internal and external factors. Hospital administrators should take active measures and establish an emotional support mechanism for adverse events in order to reduce psychosomatic injuries and improve medical quality and efficiency.
ObjectiveTo systematically review the experience of parents caring for preterm infants after discharge from hospital. MethodsWe searched databases including The Cochrane Library, Joanna Briggs Institute Library, PubMed, EMbase, Scopus, ISI Web of Science, PsycINFO, CINAHL, CBM, CNKI and VIP from inception to May 2015, to collect qualitative studies in the experience of parents caring for preterm infants after discharge from hospital. The quality of included studies was evaluated according to JBI Critical Appraisal Tool for qualitative studies in Australia. The results were integrated by integrating methods. ResultsA total of nine studies were included. Thirty-one complete findings were grouped according to their similarities to form seven categories. These categories resulted in two synthesized findings:integration results 1:parents grow in the adaptation of their care giving roles for the preterm infants; integration results 2:they are eager and thankful for support, resource and information in this critical transition period. ConclusionHealth care workers should pay attention to the important influence of premature infants discharged from hospital on their parents. In the adaption period of premature parents, health care workers should give necessary care knowledge skills to guide the parents, to assist them to compete the role of caregivers as soon as possible and promote the healthy growth of premature infants after discharge.
ObjectiveTo evaluate the weight loss outcomes, metabolic disease remission, and complications profiles of laparoscopic sleeve gastrectomy (LSG) based on a large single-center cohort experience. MethodsA retrospective observational study was conducted. Clinical data of patients who underwent LSG at Sir Run Run Shaw Hospital, Zhejiang University School of Medicine from June 2021 to June 2024 were collected based on predefined inclusion and exclusion criteria. The outcomes including percentage of total weight loss (%TWL), metabolic disease remission, and the incidence of postoperative complications were assessed. ResultsA total of 1 568 patients met the inclusion and exclusion criteria were finally included, including 304 males and 1 264 females. The age at surgery was (31.51±8.01）years old, and the body mass index was (37.26±4.18) kg/m2. At 1 year after surgery, the %TWL was (32.84±6.38)%, and the complete remission rate of diabetes was 96.2% (304/316). Complications within 1 year after surgery: 1 (0.06%) case of postoperative bleeding, 2 (0.13%) cases of gastric leakage, 1 (0.06%) case of vitamin B1 deficiency, and 1 (0.06%) case of unilateral common peroneal nerve entrapment injury. The total complications rate was 0.32% (5/1 568). No mortality was observed. ConclusionsLSG has significant short-term efficacy and higher safety in treatment of obesity and related metabolic diseases. In particular, experiences in aspects such as complications prevention and multidisciplinary follow-up management could provide references for centers in the early stage of development.