Service users’ perceptions of relevant and helpful components of an integrated care concept (ACCESS) for psychosis

IntroductionPsychotic disorders have a significant impact on patients’ lives and their families, and long-term treatment with individually tailored multimodal combinations of therapies is often required. Integrated care (IC) concepts such as the “Hamburg Model (ACCESS)” with a focus on psychotic disorders, includes different (therapeutic) components with pharmaco- and psychotherapy, family involvement, home treatment and the option of using a 24/7 crisis hotline. All components are offered by a therapeutically-oriented assertive community treatment (TACT) team in a need-adapted manner. So far, however, little is known about which specific components are regarded as especially relevant and helpful by the users of IC.MethodsPatients currently participating in IC completed a questionnaire as part of the continuous quality assurance study (ACCESS II) in which they were asked to rate the different components of treatment according to their relevance and helpfulness, considering the individual’s unique experiences with IC and needs in mental health care. Furthermore, they were asked to make suggestions regarding additional helpful components of treatment.ResultsFifty patients participated in this survey (23% of the patients currently participating in the IC concept). For participants, the most helpful and important factors were having the same therapist in the long-term and the 24/7 crisis telephone. Additional components suggested by patients included more addiction-specific therapies and increased focus on vocational rehabilitation and integration.ConclusionFrom the perspective of the users of IC, long-term care from a trusted therapist with whom there is a therapeutic relationship and the possibility to reach someone they already know from the TACT team 24/7 serves as the best basis for effective care, fostering trust, understanding, and open communication. In contrast, home treatment remains a relevant aspect of evidence-based care for people with severe mental illness, but perhaps surprisingly, is not viewed as the most important issue

Research on Rare Diseases in Germany - Cancer Predisposition Syndrome Registry

Background: Cancer predisposition syndromes (CPS) are rare diseases that are associated with an increased risk of cancer due to genetic alterations. At least 8 % of all cases of childhood cancer are attributable to CPS. The CPS registry was launched in 2017 to learn more about CPS and to improve the care to those afflicted by these diseases. Methods: This is an internationally networked registry with associated accompanying studies that investigate cancer risks and spectra, the possibilities of cancer prevention, early detection and therapy. Results: For several of these syndromes, new insights into the cancer risks and cancer types as well as factors modifying cancer risk have been gained. In addition, experimental, psycho-oncological, preclinical and clinical studies were initiated. Conclusions: The CPS registry is an example of how progress can be made within a short period of time to the benefit of individuals with rare diseases through systematic data collection and research

Forschung zu Seltenen Erkrankungen in Deutschland - Das Krebsprädispositionssyndrom-Register

Hintergrund: Krebsprädispositionssyndrome (KPS) sind seltene Erkrankungen, die auf Grund von genetischen Veränderungen mit einem erhöhten Krebsrisiko einhergehen. Mindestens 8 % aller Krebserkrankungen im Kindesalter sind auf ein KPS zurückzuführen [1, 2]. 2017 wurde das KPS-Register eröffnet, um mehr über KPS zu lernen und um die Betreuung Betroffener zu verbessern. Methode: Es handelt sich um ein international vernetztes Register sowie daran angegliederte Begleitstudien, die die Krebsrisiken und -spektren, die Möglichkeiten der Krebsprävention und -früherkennung sowie der -therapie untersuchen. Ergebnisse: Für mehrere KPS wurden neue Erkenntnisse zu Krebsrisiken und Krebsarten sowie zu Faktoren, die das Krebsrisiko modifizieren, erworben. Zudem wurden experimentelle, psychoonkologische sowie präklinische und klinische Studien ins Leben gerufen. Schlussfolgerungen: Das KPS-Register ist ein Beispiel dafür, wie für Menschen mit Seltenen Erkrankungen innerhalb kurzer Zeit durch systematische Datensammlung und Forschung Fortschritte erzielt werden können

Effectiveness of integrated care including therapeutic assertive community treatment in severe schizophrenia-spectrum and bipolar I disorders: Four-year follow-up of the ACCESS II study

<div><p>The ACCESS-model offers integrated care including assertive community treatment to patients with psychotic disorders. ACCESS proved more effective compared to standard care (ACCESS-I study) and was successfully implemented into clinical routine (ACCESS-II study). In this article, we report the 4-year outcomes of the ACCESS-II study. Between May 2007 and December 2013, 115 patients received continuous ACCESS-care. We hypothesized that the low 2-year disengagement and hospitalization rates and significant improvements in psychopathology, functioning, and quality of life could be sustained over 4 years. Over 4 years, only 10 patients disengaged from ACCESS. Another 23 left for practical reasons and were successfully transferred to other services. Hospitalization rates remained low (13.0% in year 3; 9.1% in year 4). Involuntary admissions decreased from 35% in the 2 years prior to ACCESS to 8% over 4 years in ACCESS. Outpatient contacts remained stably high at 2.0–2.4 per week. We detected significant improvements in psychopathology (effect size <i>d = 0.79</i>), illness severity (<i>d = 1.29</i>), level of functioning (<i>d = 0.77</i>), quality of life (<i>d = 0.47</i>) and stably high client satisfaction (<i>d = 0.02</i>) over 4 years. Most positive effects were observed within the first 2 years with the exception of illness severity, which further improved from year 2 to 4. Within continuous intensive 4-year ACCESS-care, sustained improvements in psychopathology, functioning, quality of life, low service disengagement and re-hospitalization rates, as well as low rates of involuntary treatment, were observed in contrast to other studies, which reported a decline in these parameters once a specific treatment model was stopped. Yet, stronger evidence to prove these results is required.</p><p><b>Trial registration:</b> Clinical Trial Registration Number: <a href="https://clinicaltrials.gov/ct2/show/NCT01888627" target="_blank">NCT01888627</a></p></div

Baseline variables.

<p>Baseline variables.</p

Characteristics of the ACCESS treatment and inclusion/exclusion criteria.

<p>Characteristics of the ACCESS treatment and inclusion/exclusion criteria.</p

Course of illness of all patients (N = 115).

<p>Course of illness of all patients (N = 115).</p

Sample flow chart.

<p>Patients of the study were recruited from 1st of May 2007 to 31st of October 2009. 115 patients with SSD or BD and severe mental illness were included for the study. All treated patients (N = 115) participated in the assessments, which were administered as part of the clinical routine.</p