Search

To optimize patient prognosis, patient needs, including unmet needs, should be adequately assessed. However, such needs are more challenging to report and, consequently, more likely to go unmet compared with the needs reported by physicians. We aimed to determine the appropriate direction of future research on unmet medical needs in rheumatic diseases in Japan by conducting a literature review. We searched PubMed and Web of Science using 23 terms linked to unmet medical needs for major rheumatic diseases in Japan. Further, we collected articles on health-related quality of life and investigated the scales used for assessment, as well as whether the terms "unmet needs" or "unmet medical needs" were used. We identified 949 papers on 10 diseases, including systemic lupus erythematosus, systemic sclerosis, dermatomyositis, juvenile idiopathic arthritis, adult-onset Still's disease, antiphospholipid syndrome, mixed connective tissue disease, Takayasu arteritis, Sjögren's syndrome, and Behçet's disease; 25 of the 949 papers were selected for full-text review. Fifteen articles on five diseases were related to health-related quality of life. The term "unmet needs" was used in only one article. Six out of 15 studies used the 36-item short form survey, whereas the scales used in other studies differed. The optimal treatment plan determined by a physician may not necessarily align with the best interests of the patient. In clinical research, cross sectional and standardized indicators of health-related quality of life should be employed along with highly discretionary questionnaires to assess and optimize resource allocation in healthcare and simultaneously achieve patient-desired outcomes., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

To assess cross-cultural adaptation, and to validate the parent's version of a health-related quality-of-life instrument, the Childhood Health Assessment Questionnaire (CHAQ) was investigated after its translation into Japanese. A total of 132 subjects were enrolled: 63 patients with juvenile idiopathic arthritis (JIA) (34 systemic and 29 polyarticular) and 69 healthy children. The CHAQ distinguished clinically between healthy subjects and the two JIA subtypes of patients. The average disability index (DI) scores for systemic JIA (sJIA) and polyarticular JIA (pJIA) patients and healthy subjects were 1.5, 1.2, and 0.0, respectively. All variables in the questionnaire were shown to be significant (P < 0.001). Patients with pJIA showed better correlation than those with sJIA. Significant correlation was seen in the polyarticular group with CRP, ESR, parents' VAS, the number of joints with pain, and the number of active joints. However, there was even a negative correlation between DI and parent's assessment of overall well-being for the sJIA group. The Japanese version of the CHAQ was a reliable and valid tool for the functional assessment of children with pJIA. Functional ability, as assessed by the CHAQ, may not be the main consideration of sJIA patients' parents when assessing their child's status.