Japanese physicians' preferences for decision making in rheumatoid arthritis treatment.

BACKGROUND: Rheumatoid arthritis (RA) is a complex chronic illness requiring continued medical care. During the past decade, the therapeutic options for RA have increased significantly; these often have a higher risk of adverse effects and are more expensive than traditional drugs. Rheumatologists may hence face difficulties when deciding on the optimal modality in initiating or changing treatment. The aim of this study was to explore the Japanese physicians' usual style of and preferences for decision making regarding RA treatment. METHODS: This was a cross-sectional study conducted using an Internet survey. Respondents were asked about their usual style of making treatment decisions (perceived style), and their perception of the importance of physicians' actions and patients' attitudes. RESULTS: Of the 485 physicians who were sent the questionnaire, 157 responded completely (response rate: 32.3%). Ninety-two percent of the respondents were men, and 57% were clinicians with more than 20 years of experience. Their specialties were general medicine (29%), rheumatology (27%), orthopedics (31%), and rehabilitation (12%). Sixty-one (39%) stated that they usually presented multiple treatment options to their patients and selected a decision for them, 42 (27%) shared the decision making with their patients, 34 (22%) let their patients choose the treatment, and 20 (13%) made the treatment decision for the patients. Physicians using the shared decision making (SDM) style desired for their patients to have supportive family and friends, to discuss with nurses, and to follow the doctors' directions more strongly compared with physicians using the other styles. There were no significant differences in sex, duration of clinical experience, major place of clinical work, and number of patients per month by the styles. More number of rheumatologists and physicians with specialist qualifications stated that they practiced SDM. CONCLUSION: To enhance patient participation, physicians need to recognize the importance of discussing treatment options with patients in addition to giving them information.

Preferences of Japanese rheumatoid arthritis patients in treatment decision-making.

OBJECTIVES: We investigated the decision-making preferences of rheumatoid arthritis (RA) patients using two different scales: the Decision Making Preference Scale (DMPS) and the modified Control Preference Scale (CPS). In addition, we evaluated the factors associated with patients' preferences for decision-making. METHODS: A cross-sectional study was performed using a self-administered anonymous questionnaire between October and December 2010 on 406 RA outpatients who consecutively visited 3 hospitals in Japan. The following variables were investigated: (1) DMPS, which is a subscale of the Autonomy Preference Index, composed of six items; patients responded on a 5-point Likert scale. (2) The modified CPS, in which patients were asked to choose one actual and one desired role in decision-making from among three options (passive role, collaborative role, and active role). (3) Sociodemographic data and RA-specific characteristics. Multivariate analyses were used to assess the relationship between patients' preferences and selected variables. RESULTS: The response rate was 58.6 %. There were few patients who wished to make their own decisions when they were hospitalized or illness became worse. However, the majority of patients desired to collaborate with the doctor in making treatment decisions according to the results of modified CPS. The results of modified CPS were significantly associated with the total scores of DMPS. Multivariate analysis demonstrated they younger age and not-housewife were associated with high scores of DMPS. CONCLUSIONS: Patient preferences in decision-making vary at RA outpatient clinic. Physicians need to assess decision-making preferences on an individual basis.

[What is professionalism?].

What is a profession? According to Cruess, it is an occupation whose core element is work that is based on the mastery of a complex body of knowledge and skills. It is a vocation in which knowledge of some department of science or learning, or the practice of an art founded on it, is used in the service of others. Its members profess a commitment to competence, integrity, morality, altruism, and the promotion of the public good within their domain. These commitments form the basis of a social contract between a profession and society, which in return grants the profession autonomy in practice and the privilege of self-regulation. Although medical professionals share the role of healer, there are wide variations between individuals. Professionalism is the basis of medicine's contract with society. Public trust is essential to that contract, and public trust depends on the integrity of both individual professionals and the whole profession. The introduction to this important symposium includes definitions of professions and of medical professionalism. It also includes discussions of reciprocal altruism, conflicts of interest in medical societies, the theory of cognitive dissonance, and the moral foundations of professionalism.

Introducing the Professionalism Mini-Evaluation Exercise (P-MEX) in Japan: results from a multicenter, cross-sectional study.

PURPOSE: Despite the growing importance of and interest in medical professionalism, there is no standardized tool for its measurement. The authors sought to verify the validity, reliability, and generalizability of the Professionalism Mini-Evaluation Exercise (P-MEX), a previously developed and tested tool, in the context of Japanese hospitals. METHOD: A multicenter, cross-sectional evaluation study was performed to investigate the validity, reliability, and generalizability of the P-MEX in seven Japanese hospitals. In 2009-2010, 378 evaluators (attending physicians, nurses, peers, and junior residents) completed 360-degree assessments of 165 residents and fellows using the P-MEX. The content validity and criterion-related validity were examined, and the construct validity of the P-MEX was investigated by performing confirmatory factor analysis through a structural equation model. The reliability was tested using generalizability analysis. RESULTS: The contents of the P-MEX achieved good acceptance in a preliminary working group, and the poststudy survey revealed that 302 (79.9%) evaluators rated the P-MEX items as appropriate, indicating good content validity. The correlation coefficient between P-MEX scores and external criteria was 0.78 (P < .001), demonstrating good criterion-related validity. Confirmatory factor analysis verified high path coefficient (0.60-0.99) and adequate goodness of fit of the model. The generalizability analysis yielded a high dependability coefficient, suggesting good reliability, except when evaluators were peers or junior residents. CONCLUSIONS: Findings show evidence of adequate validity, reliability, and generalizability of the P-MEX in Japanese hospital settings. The P-MEX is the only evaluation tool for medical professionalism verified in both a Western and East Asian cultural context.

Assessment of professionalism: recommendations from the Ottawa 2010 Conference.

Over the past 25 years, professionalism has emerged as a substantive and sustained theme, the operationalization and measurement of which has become a major concern for those involved in medical education. However, how to go about establishing the elements that constitute appropriate professionalism in order to assess them is difficult. Using a discourse analysis approach, the International Ottawa Conference Working Group on Professionalism studied some of the dominant notions of professionalism, and in particular the implications for its assessment. The results presented here reveal different ways of thinking about professionalism that can lead towards a multi-dimensional, multi-paradigmatic approach to assessing professionalism at different levels: individual, inter-personal, societal-institutional. Recommendations for research about professionalism assessment are also presented.

Impact and characteristics of quality of life in Japanese patients with multiple sclerosis.

PURPOSE: To evaluate health-related quality of life (HRQOL) in Japanese patients with multiple sclerosis (MS) and investigate associations between the results of these QOL assessments and disease severity. METHODS: One-hundred sixty-three Japanese MS patients completed a questionnaire battery comprising the Functional Assessment of MS (FAMS), the Nottingham Adjustment Scale-Japanese version (NAS-J), and the European QOL scale (EQ-5D). Additional five factors affecting QOL as identified by MS patients in a focus group interview were also investigated: employment status, change of income, availability of disease information, communication with medical staff, and care received. Disease severity was determined using the Expanded Disability Status Scale (EDSS). RESULTS: There was a strong negative correlation of the subscale scores for mobility, symptoms, emotional well-being, thinking and fatigue, and additional concerns on the FAMS with EDSS score. For the NAS-J, only acceptance of the condition was correlated with disease severity. Among the five additional aspects of the condition identified by patients, employment status, income, and disease information were shown to be important for maintaining QOL in patients with MS. CONCLUSIONS: Support for finding employment and having increased or maintained household income and readily available information about the disease contribute to improving QOL in Japanese MS patients.

Professionalism Mini-Evaluation Exercise for medical residents in Japan: a pilot study.

CONTEXT: Assessing medical professionalism among medical residents is of great importance. The Professionalism Mini-Evaluation Exercise (P-MEX) is a tool for assessing professionalism that was developed, tested for reliability and validated in Canada. Prior to the present study, no Japanese version of the P-MEX had been tested. METHODS: We modified the P-MEX for use in Japan and tested it on medical residents in a Japanese teaching hospital. For each resident, eight evaluators completed the P-MEX forms. A total of 184 P-MEX forms were completed on 23 senior residents. The construct validity of the P-MEX was analysed by confirmatory factor analysis through structural equation modelling. The reliability of the P-MEX was tested using generalisability theory and a decision study. After performing the assessment and providing feedback to the residents, we conducted a survey on the residents' perceptions of the assessment. RESULTS: Results indicate content and construct validity. A confirmatory factor analysis revealed that factor loadings ranged from 0.58 to 0.96, indicating good construct validity except for one item (P12: Maintained appropriate boundaries with patients and colleagues). Structural equation modelling showed that adding new items developed in Japan to the P-MEX provided adequate factor validity. A decision study showed confidence intervals sufficiently narrow with as few as 10 evaluations, slightly more than the eight forms verified in Canada. Most residents stated that the items were reasonable and appropriate, the results of the assessment were consistent with their own self-evaluation and the assessment enhanced their motivation. CONCLUSIONS: Our study demonstrated good evidence of adequate reliability and validity of the P-MEX for the assessment of professionalism among Japanese residents. Moreover, the addition of new items developed in Japan provided adequate factor validity.

[A survey on constitutive elements of quality of life in patients with multiple sclerosis].

BACKGROUND AND METHODS: We conducted a survey on the constitutive elements of quality of life (QOL) in patients with multiple sclerosis (MS). We recruited 20 MS patients to complete several questionnaires including Functional Assessment of MS (FAMS), Short Form 36 (SF-36), Nottingham Adjustment Scale-Japanese version (NAS-J), Sense of Coherence (SOC), and EuroQoL (EQ-5D). We also determined their Expanded Disability Status Scale (EDSS) scores, and 10 of the 20 patients answered The Schedule of Individual Quality of Life-Direct Weighting (SEIQoL-DW) by semi-structured interviews. RESULTS: 1) We confirmed that internal consistency of FAMS was excellent. 2) Comparison analysis showed associations in most items between FAMS and SF-36. 3) Acceptance of the disorder (i. e., MS), attitude towards MS, and problem-solving ability greatly influenced QOL based on analyses of FAMS, NAS-J, SOC. 4) FAMS total score closely correlated with EQ-5D score. 5) SEIQoL-DW identified personal relations, psychological status, and execution of social roles as important constituents of QOL as well as clinical symptoms and physical status. Each scale used in the present study provided information about various constitutive element of QOL. Taking into consideration the burden placed on patients in such questionnaires as well as the result of present study, a feasible set of scales are FAMS, NAS-J.

[Clinico-pathological investigation of two patients with dementia with motor neuron disease].

Dementia with motor neuron disease (D-MND) is characterized clinically by frontal and neurological signs, and pathologically by localized atrophy of the fronto-temporal lobes and neuronal ubiquitin(Ub)-positive inclusions. In this study, we compared the clinico-pathological findings of two patients with D-MND. Case 1 (55-year-old male): At the age of 51, he developed personality change and disinhibition, lacking neurological signs. Brain MRI exhibited localized atrophy of the frontal lobes. At the age of 54, he showed dysphagia and died after a disease duration of 4 years. Neuropathologically, the cerebrum showed localized atrophy of the dorsal area of the frontal lobes. The atrophied cerebral cortex demonstrated moderate neuronal loss with spongy change and gliosis in the superficial layers. The brainstem and spinal cord revealed moderate neuronal loss in the substantia nigra, severe neuronal loss with Bunina bodies in the hypoglossal nucleus, and moderate neuronal loss in the cervical anterior horn. There were some Ub-positive neuronal inclusions in the atrophied cortex and many in the dentate gyrus. Case 2 (68-year-old female): At the age of 64, she developed personality change, and then gait disturbance and dysarthria. Brain MRI exhibited localized atrophy of the fronto-temporal lobes. At the age of 67, she showed dysphagia with Babinski signs and died after a disease duration of 4 years. Neuropathologically, the cerebrum showed localized atrophy of the basal area of the temporal lobes, especially on the right side. The atrophied cerebral cortex demonstrated moderated neuronal loss with spongy change and gliosis in the superficial layers. The pre-central cortex revealed severe loss of Betz cells. The brainstem and spinal cord showed mild neuronal loss without Bunina bodies in the hypoglossal nucleus and cervical anterior horn, accompanied by severe degeneration of the bilateral pyramidal tracts. There were many Ub-positive neuronal inclusions with a few neurites in the atrophied cortex and some in the dentate gyrus. Cases 1 and 2 were clinically diagnosed as Pick's disease (PiD) and D-MND, respectively, although pathological diagnoses were both D-MND. Case 1 showed neuropathological findings typical to D-MND, whereas case 2 showed neuropathological findings common to atypical Pick's disease (aPiD). D-MND and aPiD are should be clinico-pathologically differentiated, although they are included in the frontotemporal lobar degeneration with motor neuron disease-type inclusions.

Psychological adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson's disease.

The objective of this study was to investigate the effect of psychological adjustment to Parkinson's disease (PD) on the health-related quality of life (HRQL) in patients with this condition. One hundred eighty-three patients (77 male, 106 female; mean age, 65.8 years) were evaluated using the Parkinson's Disease Questionnaire (PDQ-39) and the Japanese version of the Nottingham Adjustment Scale (NAS-J). Multiple regression analysis was performed using age and sex as the explanatory variables. Comparisons were made of changes in R2 when severity and psychological adjustment subscales were added. In addition, comparisons were made of HRQL scores between groups with different levels of psychological adjustment. R2 was higher when psychological adjustment was included in comparison with severity in the some subscales (emotional well-being, stigma, social support, cognition, communication, and bodily discomfort). HRQL was significantly lower in the low-adjustment group compared with other groups. Psychological adjustment had a greater effect than severity of disease on several subscales in the HRQL of patients with PD. This finding suggests that, in addition to any suppression of the progression of symptoms, psychological intervention may also be effective in enhancing the HRQL of patients with PD.

Development and testing of the Japanese version of the migraine-specific quality of life instrument.

We developed and tested a version of the migraine-specific quality of life (MSQOL) instrument for use in Japan. The MSQOL was translated into Japanese, evaluated by physicians and nurses who has experienced migraine headaches, 'backtranslated', approved by the author of the original version, and tested in 70 out-patients with migraine. There were no ceiling or floor effects. All three subscales were found to be internally consistent: alpha > or = 0.76. The patients' scores were similar to those reported in the user's manual, with the exception of a difference of about 11 points on the Avoidance Behaviors subscale. Some correlations between MSQOL scores and SF-36 scores were statistically significant, although none exceeded 0.52. Linear associations between some measures of symptoms and some MSQOL scales were statistically significant, but those associations were consistent neither for the two kinds of symptom reports (severity and frequency) nor across all MSQOL subscales. Low MSQOL scores in early 1999 correlated with more return visits for medication and with greater amounts of triptan (anti-migraine) medication in 2001 and 2002. Overall, we interpret these results as indicating that, while they cannot be used as substitutes for reports of symptoms, scores on the Japanese version of the MSQOL can be used to assess the impact of migraine headaches on patients' lives.

[Quality of life in Parkinson's disease].

Assessing quality of life (QOL) is now essential for making clinical, economic, social, and political decisions. QOL is multi-dimensional, subjective, and context-dependent. It can encompass physical aspects of living, activities in daily life, communication with other people, spiritual existence, and more. Parkinson's disease is a chronic progressive disease that affects many organ-systems. Complete descriptions of QOL outcomes in patients with Parkinson's disease include both qualitative-narrative methods and quantitative scales. Assessing QOL in clinical practice can help clinicians improve patients' lives.

[Validity and clinical applicability of the Japanese version of amyotrophic lateral sclerosis--assessment questionnaire 40 (ALSAQ-40)].

We studied validity and clinical applicability of the Japanese version of amyotrophic lateral sclerosis (ALS) assessment questionnaire 40 (ALSAQ-40). The original version contains forty questions measuring five areas (domains) of health status: Physical Mobility, ADL/Independence, Eating and Drinking, Communication and Emotional Functioning. Data were obtained from 39 ALS patients and from their physicians at 15 centers in Japan. Patients completed the ALSAQ-40 and the SF-36, and provided information on their age and their status of ventilator use. Their physicians provided information on the date of diagnosis, type of disease and clinical characteristics, and ALSFRS-R. The patients' average age was 58.5 years, and 64% were men. The mean duration since diagnosis was 39.1 months. Forty four percent were classical ALS patients and 46% were receiving a respiratory intervention. Although there was much heterogeneity, the scores for Physical Mobility and ADL/Independence were higher(indicating worse health status)than the scores for the other domains. Item-scale correlations were strong, except for the item "felt embarrassed in social situations" in the Emotional Functioning domain. All the domains had very high internal consistency: Cronbach's alphas ranged 0.95 to 0.97. With regard to the cluster structure of the forty items, the Eating and Drinking domain and the Communication clustered together. The reason might be that the former consisted of only three items and both domains measure bulbar symptoms. Domain scores correlated significantly with scores of related dimensions in the SF-36 and ALSFRS-R, and did not correlate strongly with unrelated domains. The five items of the ALSAQ-5 correlated with all five domain scores on the ALSAQ-40. These results should be interpreted with caution because we analyzed together data from ALS patients with various characteristics. In conclusion, although we may need to add and remove some items and modify the wording of others, the Japanese version of the ALSAQ-40 had high validity and is likely to be useful in evaluating of QOL in ALS patients. Whether the ALSAQ-5 can be used in place of the ALSAQ-40 is a matter for further study.

[Validation of the Japanese version of the Parkinson's Disease Questionnaire].

UNLABELLED: The PDQ-39 (Parkinson's Disease Questionnaire-39) is a specific quality-of-life (QOL) scale for patients with Parkinson's disease (PD). It evaluates the dysfunction of daily living and quality of life. We developed the Japanese-translated version of PDQ-39 and examined the validity of the PDQ-39 in Japanese PD patients. SUBJECTS: A total of 156 patients with PD were studied (age 35-86 years, Hoehn-Yahr stage 1 to 4). None of the patients had dementia. METHODS: Semi-structured interviews were conducted by one trained interviewer. The PDQ-39, SF-36 (36-item short form of the Medical Outcome Study questionnaire), EQ5D (Euro Qol), and NAS-J (Nottingham Adjustment Scale Japanese version) were used for evaluation. The attending physician of each patient rated the patient's condition by using the UPDRS (Unified Parkinson's Disease Rating Scale). RESULTS: Exploratory factor analysis, Cronbach alpha, and construct validity were fair, and there were significant correlations between the results of the PDQ-39 and the corresponding parts of the UPDRS and SF-36, and the Hoehn-Yahr stage, respectively. CONCLUSION: The Japanese version of the PDQ-39 is valuable for evaluating the QOL of Japanese patients with PD. Results of comparison of PDQ-39 with other scales of the QOL such as NAS-J suggest the possibility that acceptance of the disease and feelings of self-achievement improve the QOL of patients with Parkinson's disease.