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Abstract Background Inclusion body myositis (IBM) is the most frequent type of myositis in elder patients with a slow chronic progression and refractory to treatment. Previous cost of illness (COI) studies in IBM used claims data to estimate direct costs in the US. No evidence exists globally on both direct and indirect costs in IBM from a societal perspective. We conducted a survey in patients registered in the German IBM patient registry. Self-developed items were used to assess the utilized healthcare resources and estimate the cost. The German Self-Administered Comorbidity Questionnaire (SCQ-D), the sIBM Physical Functioning Assessment (sIFA) and patient-reported measures for satisfaction and improvements in healthcare were applied for an explorative analysis. Results In total, 82 patients completed the survey. We estimated the mean total annual per capita COI of US$102,682 (95% CI US$82,763–US$123,090) in 2021. 92.7% of the total COI were direct costs. Medical costs were similar to nonmedical costs, with substantial costs for pharmacotherapy and informal care. Depending on the prevalence estimate, the total national COI per year were US$42.7 million–US$213.7 million. Significant differences in total COI were identified for the degree of disability, marital and employment status (p

Abstract Background To understand the health-related quality of life (HRQoL) in inclusion body myositis (IBM) from a holistic perspective on the background of a complex care situation. The focus was on how the patient journey may be structured over the course of this rare disease. Methods An exploratory qualitative study was performed via in-depth semi-structured interviews. Seven patients (males n = 5) with 2011 European Neuromuscular Centre (ENMC) IBM criteria from the German IBM patient registry were interviewed for this study. The dynamic network approach of resilience and the throughput-model of health services research were used to structure the qualitative analysis. Results Our results suggest that IBM patients experience the holistic HRQoL and care situation typically in four phases: (1) uncertainty about physical vulnerability until diagnosis, (2) promising treatment approaches, (3) self-management and dyadic coping, (4) weak body, busy mind and caregiver burden. The homophonous in-vivo code “patience journey” describes the frequently reported emotional perspective of the patient journey. Although the overarching theme of perceived social support varied throughout these phases, a reliable patient-partner-dyad may lead to improved HRQoL in the long-term. Conclusions New hypotheses for future quantitative research were generated to better understand the IBM patients’ burden in the long term. The identified relevance of social support emphasizes the patients’ need to handle IBM as manageable in medical settings. During exhausting phases of IBM progression, more effective care elements for patients and their partners could disclose varying needs. Strengthening multi-professional healthcare services via individualised informational, practical, or emotional support could improve HRQoL, especially since there is no curative treatment available so far.

Abstract Background Inclusion body myositis (IBM) is a rare neuromuscular disease (NMD) and effective therapies are not available. Thus, it is relevant to determine the health-related quality of life (HRQoL) in IBM patients including aspects of mental health and illnesses. Objectives To identify and summarize the assessment of HRQoL, mental health and illnesses in IBM, the major factors that determine and influence them as well as the respective influence of IBM in general and compared to other NMD as a systematic review. Methods We performed a mixed methods systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. The search was conducted within the databases PubMed, PsycINFO, LIVIVO and the Cochrane Database. Data were narratively summarized and categorized in the physical, psychological and social HRQoL dimensions. Results The systematic screening totalled 896 articles. Six studies were finally identified, comprising of 586 IBM patients. The applied patient reported outcome measures (PROMs) varied. Quantitatively, the main physical impairments (e.g. weakness, functioning, role perception) were assessed using the general population or other NMD as comparators. Results on social and psychological HRQoL were frequently inconsistent. Qualitatively, psychological and social limitations accompanied IBM related physical deteriorations. Conclusions A research gap exists regarding rigour determinants of HRQoL and mental illness in IBM. In-depth qualitative studies could help to prepare the ground for the assessment of long-term HRQoL data combined with appropriately focussed psychological PROMs advancing the understanding of the HRQoL in IBM throughout the course of the disease from a patient perspective.

Durch die Covid-19-Pandemie hat sich die mentale Gesundheit weltweit verschlechtert. In diesem Zusammenhang ist ein Anstieg an Suizidraten nicht auszuschließen. Suizid-Präventions-Apps könnten den Patienten im Umgang mit Suizidalität helfen. Deshalb wurden Effekte von Suizid-Präventions-Apps auf das Auftreten und die Intensität von Suizidgedanken im Zuge einer Übersichtsarbeit erfasst. Dabei wurden quantitative Studien zu Smartphone-Apps mit dem Endpunkt Suizidgedanken eingeschlossen, die eine Sicherheitsplanfunktion aufwiesen. Vier relevante Studien wurden identifiziert, bei denen das Vorliegen von Bias-Varianten unterschiedlicher Ausprägung angenommen werden muss. Die Ergebnisse zeigten zwar positive Effekte, die aber überwiegend statistisch nicht signifikant waren. Die Ergebnisse dieser Arbeit reihen sich in den bisherigen Stand der Forschung ein. Die geringe Zahl an Studien sowie methodische Schwachstellen limitieren die Aussagekraft der Ergebnisse. Deutschland ist in der Forschung und Entwicklung zu Suizid-Präventions-Apps kaum vertreten. Wenn zukünftig entsprechende internationale Apps als digitale Gesundheitsanwendungen (DiGAs) für das deutsche Gesundheitswesen verfügbar werden, ist davon auszugehen, dass eine Suizidprävention per App positive Effekte bei Suizidalität zeigen werden. Gleichzeitig sollten hochwertige Studien im nationalen Setting die positiven Versorgungseffekte zeitnah bestätigen.