Background: Increasing attention is being paid to improve the quality of life of patients with rare diseases in China. However, we are currently unaware of the problems encountered in the medical services of rare diseases from the viewpoints of doctors and patients. This study addressed the differences in the perceived barriers of diagnosis and treatments for rare diseases between doctors and patients in China. Methods: Two independent cross-sectional surveys on the perception of Chinese doctors’ and patients’ experiences with rare diseases were launched online between January and February 2018. A non-probability, convenience sampling method was employed to recruit participants. Results: In all, 45 rare diseases were reported by 139 doctors and 1853 patients. Patients with rare diseases faced significantly more difficulties in receiving accurate diagnosis (72.0%) and accessing information related to diagnosis and treatment (77.3%) as compared with doctors (34.5% and 40.3%, p < 0.0001, respectively). Specially, patients felt more difficulties than doctors in obtaining sustainable treatment for rare diseases (84.3% vs. 49.6%, p < 0.001). A higher percentage of patients (58.7%) than that of doctors (39.1%) had concerns in terms of the affordability of drugs. Further, 66.3% patients claimed that the drugs used to treat their conditions were not covered by their current medical insurances, whereas only 21.6% for doctors (p < 0.0001). Moreover, 35.3% of doctors responded that they recommended patients to visit the specialist they knew or were acquainted with, whereas 30.0% of patients said that their doctors chose to treat them based on their past experiences (p < 0.001). Conclusion: The perceived experience of patients with regard to diagnosis and treatment was significantly different from that of doctors. An integrated medical service platform should be established to facilitate better communication and mutual understanding of rare diseases between patients and doctors.
BACKGROUND Internet hospitals show great potential for adequately fulfilling people’s demands for high-quality outpatient services, and with the normalization of the epidemic prevention and control of COVID-19, Internet hospitals play an increasingly important role in delivering health services to the public. However, the factors that influencing patients’ intention to use the online inquiry services provided by Internet hospitals remain unclear. Understanding the patients’ behavioral intention is necessary to support the development of Internet hospitals in China and promote of patients’ intention to use online inquiry services provided by Internet hospitals during the prevention and control of COVID-19 epidemic. OBJECTIVE The purpose of this study was to identify the determinants of patients’ intention to use the online inquiry services provided by Internet hospitals based on the theory of planned behavior (TPB). METHODS The hypotheses of our research model were developed based on the TPB. A questionnaire was developed through patient interviews, verified using a pre-survey, and used for data collection for this study. The cluster sampling technique was used, to include respondents with chronic diseases. Structural equation modeling was used to test the research hypotheses. RESULTS A total of 638 valid responses were received from patients with chronic diseases. The goodness-of-fit indexes corroborated that the research model was a good fit for the collected data. The model explained 45.9% of the variance in attitude toward the behavior and 60.5% of the variance in behavioral intention. Perceived behavioral control and perceived severity of disease had the strongest total effects on behavioral intention (β=0.624, P=.028 and β=0.544, P=.023, respectively). Perceived behavioral control (β=0.624; P<.001), perceived severity of disease (β=0.544; P=.001), attitude toward the behavior (β=0.394; P<.001), and perceived medical risk (β=-0.192; P<.001) had direct effect on behavioral intention. Moreover, perceived convenience, perceived information risk, emotional preference, and health consciousness had indirect effects on behavioral intention, and these effects were mediated by attitude toward the behavior. Among the four constructs, perceived convenience had the highest indirect effect on behavioral intention (β=0.207; P=.007). CONCLUSIONS Perceived behavioral control and perceived severity of disease are the most important determinants of patients’ intention to use the online inquiry services provided by Internet hospitals. Therefore, Internet hospitals should further optimize the design of online service delivery and ensure a reasonable assembly of high-quality experts, which will benefit the promotion of patients’ adoption intention toward online inquiry services for health purposes. Perceived convenience, emotional preference, and perceived risks also have an effect on behavioral intention. Therefore, the Chinese government needs to further improve the relevant quality control standards and regulations of Internet hospitals, provide solid measures to protect personal information and ensure patient safety. Our study supports the use of the TPB in explaining patients’ intention to use online inquiry services provided by Internet hospitals.
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