RESUMEN
This study aimed to depict the emotional journey of Japanese patients with specific intractable diseases facing challenges associated with a delayed diagnosis. Specifically, our focus was on elucidating the emotional journey of patients and identifying the unmet needs caused by a delayed diagnosis. We conducted a web-based survey targeting 179 patients with 11 specified intractable diseases. They reported their emotional states during each journey phase using a 10-point scale. The results revealed that the period from noticing bodily changes to clinic visits was characterized by the most negative emotional states. Furthermore, the patients experienced a gradual shift towards positive emotional states as they decided to complete a consultation at a specialized hospital. They reached their most positive emotional states when they received a definitive diagnosis, subsequent treatment, and care. The thematic classification of emotional changes at the time of definitive diagnosis showed that "relief" was the most prevalent emotion (41.9%), followed by "no change" (19.9%), "anxiety" (14.0%), "shock" (13.4%), and "resignation" (6.5%). Additionally, when classifying the thematic changes in emotions during the period of bodily changes and clinic visits, "frustration" was the most common (51.3%), followed by "fear and anxiety" (43.6%). Patients tended to be most psychologically distressed during the period leading up to the definitive diagnosis. These results reveal that patients with intractable diseases are seeking a fast and accurate diagnosis, and that achieving these is a key unmet need for the patients.
RESUMEN
This study aimed to determine the challenges that cause a delay in the diagnosis of Japanese patients with specific intractable diseases by means of a survey. We conducted a questionnaire survey involving 424 patients with 12 specific intractable diseases. Pearson's chi-square test was used to examine the relationship between diagnostic delay and each factor. The reasons for the diagnostic delay were analyzed. Pearson's chi-square test showed statistically significant differences in the relationship between the period to definitive diagnosis and period between symptom onset and first hospital visit (p = 0.002), and the period when the patients suspected the disease (p < 0.001). Reasons for diagnostic delay of these patients were patients' time constraints, problem in access to medical institutions, hesitancy in seeking medical attention, and healthcare system issues. Early definitive diagnosis of intractable diseases was hindered by several important issues. The resolution of these issues will require combined societal efforts as well as improvements in the healthcare system. The study revealed the need for improving patients' awareness about their disease, enabling patients to be proactive towards achieving a definitive diagnosis, and making improvements in the healthcare system regarding early diagnosis and care of patients with intractable diseases.
RESUMEN
Trust in physicians is an important metric in shared decision-making. Many patients with rare diseases experience misdiagnosis or delayed diagnosis because of difficulties in diagnosis or access to specialists. What impact do these have on trust in physicians? This study focused on patients with rare diseases, evaluated the effects of a delayed diagnosis and misdiagnosis on trust in physicians, and clarified the backgrounds of patients who have experienced delayed diagnoses. Patients with any of the 334 intractable diseases in Japan were registered, and a questionnaire survey was conducted on 1,000 valid registrations. Scores were calculated on a five-point Likert scale, and Cronbach's alpha coefficient was calculated to determine internal consistency, which was 0.973. Independent sample t-tests and analysis of variance were used to compare average trust scores based on patient demographics. The mean trust in physician score of patients who waited ≤ 1 year until definitive diagnosis was 47.66 ± 11.69, while those of patients who waited > 1 year was 45.07 ± 11.63 (p = 0.004). The average trust scores of patients with or without a misdiagnosis were 46.69 ± 11.96 and 47.22 ± 11.65 (p = 0.550), respectively. Among patients with time to a definitive diagnosis of > 1 year, 62.8% had a period from symptom onset to initial hospital visit of > 1 year. A longer time to definitive diagnosis lowered the degree of trust in physicians. Many patients who experienced delayed diagnoses also had a long time from symptom onset to the initial medical visit. This aspect is important for understanding the background of patients who experienced delayed definitive diagnoses.
RESUMEN
Medical devices provide important infrastructural support in modern healthcare systems. However, in low- and middle-income countries (LMICs), inadequate maintenance and management of devices due to a shortage of healthcare personnel (not only doctors and nurses but also other professionals including biomedical engineers [BMEs]) has resulted in inefficient and weak healthcare systems. High-income countries, including Japan, have resolved these problems by developing human resources and technologies to maintain and manage these systems. In this paper, we discuss the possibility of mitigating these problems in LMICs through human resource development and technology, based on lessons from Japan's experience. The problem of medical device management in LMICs stems from the fact that there are few professionals, such as BMEs, in charge of the management of medical devices and that clinical engineering departments in charge of device management have not been established. Since the 1980s, Japan has introduced a licensing system for BMEs, establishing operational guidelines to clarify their responsibilities within hospitals and using technology to utilize data and reduce workloads. Nevertheless, workload problems and high costs required to introduce computerized management systems persist. Moreover, it would be difficult to implement the same measures as those adopted in Japan in LMICs where there is an overwhelming shortage of medical personnel. It may be necessary to further reduce workloads for data entry and device management; use up-to-date, inexpensive, and user-friendly technology; and train non-BME personnel to operate and maintain equipment.