ABSTRACT
Antisynthease syndrome (ASSD) is a rare, complex and understudied autoimmune disease. Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184/236 (78.0%) were female, mean age (SD) was 49.6 years (11.3) and most common antisynthetase antibody was Jo-1 (169/236, 71.6%). 79/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159/236 (67.4%), followed by myalgia 130/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42/236 (17.8%) at disease onset and in 88/236 (37.3%) during the disease course. 36/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179/236 (75.9%), followed by rituximab 85/236 (36.0%). 73/236 (30.9%) had received physiotherapy treatment. 71/236 (30.1%) reported to know useful online information sources related to ASSD. 223/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.
Subject(s)
Autoantibodies , Myositis , Humans , Female , Middle Aged , Male , Rare Diseases , Delayed Diagnosis , Myositis/diagnosis , Myositis/therapy , Syndrome , Patient Acceptance of Health CareABSTRACT
OBJECTIVE: In order to improve health care in geriatric psychiatry, users must be granted a larger role in shaping their treatment. To this aim we identify factors that are essential to psychiatric care from users' perspectives. METHODS: Focus groups and interviews (nâ¯= 12) were conducted to identify the health care factors that were most essential to its users. In addition, patients (nâ¯= 72) and relatives (nâ¯= 62) evaluated the current health care in a questionnaire. RESULTS: The most essential factors were longer consultations with doctors and treatment providers, comprehensive and comprehensible information, individualized procedures and therapies, having clearly defined scopes for each professional group, environmental factors and the integration of relatives into the therapy process. CONCLUSION: The reported factors could help improve health services in geriatric psychiatry by pointing towards potential changes and room for optimization in health care on both structural and process levels.
Subject(s)
Geriatric Psychiatry , Motivation , Aged , Hospitals , Humans , Psychotherapy , Surveys and QuestionnairesABSTRACT
BACKGROUND: There is a need for a theoretical model for evaluating integrative and flexible care models according to § 64b of the Social Security Statutes Book V (SGB V). MATERIAL AND METHODS: An iterative process of data collection and analysis has been executed according to grounded theory methodology. RESULTS: A total of 11 specific components have been identified and shown to be robust and practicable and compatible with the data from the literature. CONCLUSION: These components can be used for implementation, quality management and evaluation of projects for treatment models according to § 64b SGB V.
Subject(s)
Delivery of Health Care , Models, Theoretical , Books , Data Collection , Delivery of Health Care/statistics & numerical data , Germany , Humans , Research DesignABSTRACT
PURPOSE: Living in disadvantaged urban areas is associated with poor mental health. The purpose of this study was to assess which social characteristics were associated with psychological distress within a disadvantaged, multi-ethnic neighbourhood of Berlin. METHODS: The study was conducted in an area of Berlin with the highest rates of unemployment and highest density of migrants. A total of 143 participants aged 18-57 years were included from a random sample. The social characteristics educational level, employment status, marital status, living alone, per-capita income and background of migration were collected. Psychological distress was assessed using the General Health Questionnaire GHQ-28; scores ≥ 5 indicated psychological distress corresponding to psychiatric caseness. RESULTS: Psychological distress was found in 40.6% (n = 58) of the sample. Psychological distress was associated with younger age (OR = 0.95, 95% CI = 0.92-0.98, p = .004), female gender (OR = 3.51, 95% CI = 1.55-7.92, p = .003) and living alone (OR = 3.88, 95% CI = 1.58-9.52, p = .003), but not with background of migration, low educational level or with unemployment. CONCLUSIONS: Young age and female gender may predispose for psychological distress in disadvantaged areas. Living alone could be a social indicator of poor mental health within disadvantaged urban areas. The directionality of the association is unclear. BACKGROUND: of migration, low income and educational level do not seem to be associated with poor mental health within those areas.
