[Special medical outpatient care-3.5 years of outpatient specialist care in rheumatology : An inventory]. / Ambulante spezialfachärztliche Versorgung ­ 3,5 Jahre ASV in der Rheumatologie : Eine Bestandsaufnahme.

BACKGROUND: In 2012 the outpatient specialist medical care (ASV) was introduced as an intersectoral, interdisciplinary, outpatient care concept. As from 19 April 2018 there is the possibility to form teams for the ASV for rheumatic diseases in adults as well as in children and adolescents.. MATERIAL AND METHODS: Analysis of previously unpublished data of the National Confederation of Statutory Health Insurance (GKV-SV) and of data of the ASV service department and a comparison with data of standard healthcare services and with the previous care concept of outpatient care in hospitals (ABK). RESULTS: After its introduction for 3.5 years, the ASV in rheumatology for adult care has developed into a significant healthcare model for rheumatologists in private practices and hospitals. There were 57 teams consisting of 458 rheumatologists in ASV rheumatism for adults, which represent 44% of all rheumatologists involved in adult care. For children and adolescents, there were 7 teams with 19 pediatric rheumatologists, i.e. 8% of pediatric rheumatologists in health care. The number of patients treated was still significantly lower than the potential, but showed a strong increase. Almost 64,000 adults and 811 children and adolescents were treated in the ASV in the second quarter of 2021. OUTLOOK: Whether the facilitation of outpatient care and the introduction of hybrid diagnosis-related groups planned in the coalition agreement will spur the ASV development remains to be seen.

[Publicity campaign rheuma2025 of the Union for Rheumatology]. / Öffentlichkeitskampagne "rheuma2025" des Bündnisses für Rheumatologie.

The publicity campaign "rheuma2025", initiated by the Union for Rheumatology, aims at improvement of patient-centered care. For this the number of positions for trainees in rheumatology needs to increase to a level which matches the public needs. Students in medical school must have even more interest for the discipline and they must be recruited. Regulatory constraints in the approval by the authorities for opening a private rheumatology practice must become much more flexible. The possibilities for in-patient acute care of patients in specialized hospitals have to be strengthened. Finally, the public image of rheumatology per se must be sharpened. To achieve these goals a homepage for the campaign was created ( https://rheuma2025.de ), which provides a toolkit of items for the public, for physicians and students. Various media channels for rheuma2025 were established with specific contents for each target group.

[Care atlas rheumatology : Approaches and concepts for improving care in outpatient rheumatology]. / Versorgungsatlas Rheumatologie : Ansätze und Konzepte zur Verbesserung der Versorgung in der ambulanten Rheumatologie.

Inflammatory rheumatic diseases affect 1.5 million adults and an estimated 20,000 children and adolescents throughout Germany. The successful treatment of these patients is largely based on the availability of high-quality medical care. To be able to provide sufficient care and prevent long waiting times even though the number of rheumatologists is below demand, efficient practice structures and approaches that go beyond standard care play an important role. The present study takes a look at the current state of rheumatological outpatient care as well as innovative care initiatives to support the service provision structures and to improve the care situation in rheumatology and points out: to ensure guideline-based care despite scarce resources, selective contracts, integrated outpatient specialist care (ASV), early or emergency consultation hours, disease management programs (DMP) and appropriate delegation of medical services play an important role. New care concepts increasingly focus on interdisciplinary cooperation (DMP and ASV), strengthened self-management through structured patient training (DMP) and targeted patient management through screening tools. To ensure an up to date and high-quality treatment in the long term, an increase in further training in rheumatology is necessary. This should be achieved by attracting more students and, if necessary, adjusting the training system.

[Outpatient specialist medical treatment (ASV)-a new treatment level in rheumatology]. / Ambulante spezialfachärztliche Versorgung (ASV) ­ eine neue Versorgungsebene in der Rheumatologie.

Since April 2018, the new third level care model of outpatient specialist care (ASV) according to §116b of the Social Code Book V (SGBV) has been available for patients with chronic inflammatory rheumatic diseases in Germany. Not only is a multiprofessional cooperation between the disciplines involved in treating rheumatic diseases promoted but also the cooperation between specialized rheumatologists and other specialists in private practice and in hospitals is encouraged. As budget capping limiting services and number of cases do not apply in ASV, a significant improvement of patient care in rheumatology is expected due to an increase in provider capacity. At the end of May 2019, 72 rheumatologists in the first 9 newly approved ASV teams had qualified for this new care concept. Bureaucratic obstacles have so far delayed the implementation of ASV. Difficulties arose in building a team with different specialties, in the process of registration of the teams and the assessment of the registration by certain regional boards responsible for access control. The national associations of rheumatologists, the Professional Association of German Rheumatologists (BDRh), the VRA (Verband der Rheumatologischen Akutkliniken e. V.) and the German Society of Rheumatology (DGRh) campaign for an easier admission of providers to the ASV and for adequate financing of all specialties involved in the ASV. The aim is to realize the chance of the ASV for better rheumatological care nationwide with shorter waiting times for a medical appointment and a better cooperation between specialists.

[Outpatient medical specialist care (ASV): A multiperspective study on status quo, challenges and perspectives]. / Ambulante Spezialfachärztliche Versorgung (ASV): eine multiperspektivische Studie zu Status quo, Herausforderungen und Perspektiven.

BACKGROUND: In 2012, the so-called ambulatory medical specialist care (ASV) was implemented in accordance with para. 116b of Book V of the German Social Code (SGB V), enabling physicians in outpatient practices and hospitals to treat patients with rare diseases or complex courses of disease in a uniform framework. The implementation, however, is slow. The Joint Federal Committee (G-BA) has therefore commissioned an evaluation of the ASV with the aim to examine the reasons for this and to provide recommendations for further development. METHODS: The health services research study "GOAL-ASV" (Innovation Fund, 01VSF19002) included a multi-perspective design with primary data collection as well as secondary data analyses. Data from the ASV service center and the central association of statutory health insurances and the notification forms of the extended state committees were analyzed. Data from the Robert Koch-Institute, the Federal Joint Committee, the National Association of Statutory Health Insurance Funds and a literature database analysis were used in order to estimate the proportion of insured persons qualifying for ASV. Care was examined by analyzing pseudonymized routine data from the statutory health insurances using selected indicators. Participating and not participating physicians were asked to complete an online survey. RESULTS: Since the start of ASV, 615,531 insured persons have been treated in this form of care. At the time of analysis, 509 teams were operating, with 26,540 physicians treating 102,898 patients by the end of March 2021 in all indications. This comprises less than 9.8 %. of all approx. 1.05 million eligible patients. Especially in the case of rare diseases, a low willingness of participation can be seen. In addition, there was a relevant proportion of multiple uses of physicians within and outside ASV at 31 percent as well as indications of passive participation of doctors. We found significant regional differences in type and scope of the notification procedure as well as the implementation of teams with 13.4 teams per 1 million inhabitants in Schleswig-Holstein and no team in Mecklenburg-Vorpommern. Patient benefits (84 %), interdisciplinary (82 %) and cross-sectoral cooperation (75 %) were cited as motivations for participation. The main barriers reported by the respondents were the complex and laborious notification procedure (60 %), the administrative and documentation effort during participation (50 %), insufficient billing figures (49 %), and a small proportion of patients (32 %) with a consecutively unfavorable assessment of the cost to income ratio due to the current reimbursement system. DISCUSSION: Nearly ten years after its introduction, the ASV has not become established nationwide. The reasons for this probably are the complex notification procedure and the reimburesement system for rare diseases. In the case of rare diseases, the risk of underuse is becoming apparent. CONCLUSION: Strategies to further develop the ASV should, in particular, simplify the notification procedure and reduce the obstacles during participation. The remuneration system should take more account of the specific care required.

Molecular based newborn screening in Germany: Follow-up for cystinosis.

BACKGROUND: Newborn screening (NBS) programs for treatable metabolic disorders have been enormously successful, but molecular-based screening has not been broadly implemented so far. METHODS: This prospective pilot study was performed within the German NBS framework. DNA, extracted from dried blood cards was collected as part of the regular NBS program. As cystinosis has a prevalence of only 1:100,000-1:200,000, a molecular genetic assay for detection of the SMN1 gene mutation with a higher prevalence was also included in the screening process, a genetic defect that leads to spinal muscular atrophy (SMA). First tier multiplex PCR was employed for both diseases. The cystinosis screening employed assays for the three most common CTNS mutations covering 75% of German patients; in case of heterozygosity for one of these mutations, samples were screened by next generation sequencing (NGS) of the CTNS exons for 101 CTNS mutations. A detection rate of 98.5% is predicted using this approach. RESULTS: Between January 15, 2018 and May 31, 2019, 257,734 newborns were screened in Germany for cystinosis. One neonate was diagnosed with cystinosis, consistent with the known incidence of the disease. No false positive or false negatives were detected so far. Screening, communication of findings to parents, and confirmation of diagnosis were accomplished in a multi-disciplinary setting. This program was accomplished with the cooperation of hospitals, physicians, and parents. In the neonate diagnosed with cystinosis, oral cysteamine treatment began on day 18. After 16 months of treatment the child has no clinical signs of renal tubular Fanconi syndrome. CONCLUSIONS: This pilot study demonstrates the efficacy of a molecular-based neonatal screening program for cystinosis using an existing national screening framework.