Evaluating case management for caregivers of children with spinal muscular atrophy type I and II—an exploratory, controlled, mixed-methods trial

IntroductionSpinal muscular atrophy (SMA) is a rare neuromuscular disease requiring various clinical specialists and therapists to provide care. Due to the disease's dynamic nature and the long distances between specialized centers and local providers, integrating care between disciplines can be challenging. Care that is inadequately integrated can compromise the quality of care and become a burden for patients and families. This trial aimed to improve the care of patients through a case management (CM) intervention.MethodsWe conducted an exploratory, controlled, two-arm trial with pre-, post-, and follow-up measures (process and outcome evaluation). Proof of efficacy based on statistical significance was not our primary study objective since we were investigating a rare disease. Primary outcomes were caregivers' HRQoL and caregiver-rated quality of care integration. Our secondary outcome was the children's HRQoL.ResultsQuestionnaires and semi-structured interviews yielded heterogeneous results depending on caregivers' level of experience and desire (or possibility) to delegate care tasks.DiscussionDespite differing perceptions, all participants supported the establishment of a care coordination model. We recommend CM immediately after diagnosis to provide the greatest benefit to families. We hope that our trial will support the further development of CM interventions that can be customized for specific diseases

A nationwide registry for recurrent urolithiasis in the upper urinary tract – The RECUR study protocol

Background Urinary stone disease is a widespread disease with tremendous impact on those affected and on societies around the globe. Nevertheless, clinical and health care research in this area seem to lag far behind cardiovascular diseases or cancer. This may be due to the lack of an immediate deadly threat from the disease and therefore less public and professional interest. However, the patients suffer from recurring, sometimes intense pain and often must be treated in hospital. Long-term morbidity includes doubled rates of chronic kidney disease and arterial hypertension after at least one stone-related event. Observational studies, more specifically, registries and other electronic data sets have been proposed as a means of filling critical gaps in evidence. We propose a nationwide digital and fully automated registry as part of the German Ministry for Education and Research (BMBF) call for the establishment of model registries”. Methods RECUR builds on the technical infrastructure of Germany’s Medical Informatics Initiative. Local data integration centres (DIC) of participating medical universities will collect pseudonymized and harmonized data from respective hospital information systems. In addition to their clinical data, participants will provide patient reported outcomes using a mobile patient app. Scientific data exploration includes queries and analysis of federated data from DICs of eleven participating sites. All primary patient data will remain at the participating sites at all times. With comprehensive data from this longitudinal registry, we will be able to describe the disease burden, to determine and validate risk factors, and to evaluate treatments. Implementation and operation of the RECUR registry will be funded by the BMBF for five years. Subsequently, the registry is to be continued by the German Society of Urology without significant costs for study personnel. Discussion The proposed registry will substantially improve the structural and procedural framework for patients with recurrent urolithiasis. This includes advanced diagnostic algorithms and treatment pathways. The registry will help us identify those patients who will most benefit from specific interventions to prevent recurrences. The RECUR study protocol and the registry’s technical architecture including full digitalization and automation of almost all registry-associated proceedings can be transferred to future registries

The Dyadic Asthma Management Questionnaire for Adolescents and Their Caregivers

<jats:p> Abstract: Background: Validated English language measures for dyadic assessment and analyses of family asthma management are still rare and no such measure is available in the German Language so far. Aim: The aim of our study was the development and psychometric evaluation of a dyadic questionnaire allowing consideration of both adolescent and caregiver perceptions about responsibility sharing and collaboration in family asthma management. Method: The Dyadic Asthma Management Questionnaire (DAMQ) was developed with a combined theory-driven and empirical approach. For psychometric evaluation, structural validity, internal consistency, construct validity, and readability was tested in a sample of N = 150 adolescents with asthma and their primary caregivers ( N = 125). Analyses included a dyadic methodology and examination of measurement invariance across different age groups. Results: The DAMQ was generated as a two-part measure assessing (1) responsibility sharing and (2) collaboration in adolescent-caregiver asthma management. For both parts of the DAMQ and both adolescent and caregiver versions, a coherent factor structure with interpretable subscales and good psychometric properties (e.g., Cronbach’s α, ω, and glb > 70 for all scales) could be confirmed. Indices for older adolescents (≥ 14 years) proved to be better than those for younger adolescents (< 14 years). Limitations: Limitations concerning sampling, chosen factor analytic procedures, and the need for further research are discussed. Conclusion: The DAMQ has the potential to serve as a useful clinical tool to identify and compare adolescents’ and caregivers’ perspectives on asthma management, providing a potential starting point for targeted clinical interventions. </jats:p&gt

Barriers and facilitating factors of care coordination for children with spinal muscular atrophy type I and II from the caregivers' perspective: an interview study

Abstract Background Children with medical complexity (CMC) require long-term care accompanied by different health- and social care professionals. Depending on the severity of the chronic condition, caregivers spend a lot of time coordinating appointments, communicating between providers, clarifying social legal issues, and more. Effective care coordination is seen as key to addressing the fragmented care that CMC and their families often face. Spinal muscular atrophy (SMA) is a rare genetic, neuromuscular disease which care involves drug therapy and supportive treatment. We examined the care coordination experiences through a qualitative interview analysis of n = 21 interviews with caregivers of children with SMA I or SMA II. Results The code system consists of 7 codes and 12 sub-codes. “Disease and coordination management of the caregivers” describes the management of coordination-related illness demands. “General conditions of care” include enduring organizational aspects of the care network. “Expertise and skills” refers to both parent and professional expertise. “Coordination structure” describes the assessment of existing coordination mechanisms as well as the need for new ones. “Information exchange” defines the information exchange between professionals and parents as well as the exchange of parents among themselves and the perceived exchange between professionals. “Role distribution in care coordination” summarizes parents' “distribution” of coordinative roles among care network actors (including their own). “Quality of relationship” describes the perceived quality of the relationship between professionals and family. Conclusion Care coordination is influenced peripherally (e.g., by general conditions of care) and directly (e.g., by coordination mechanisms, interaction in the care network). Access to care coordination appears to be dependent on family circumstances, geographic location, and institutional affiliation. Previous coordination mechanisms were often unstructured and informal. Care coordination is frequently in the hands of caregivers mainly as the care network’s interface. Coordination is necessary and must be addressed on an individual basis of existing resources and family barriers. Existing coordination mechanisms in the context of other chronic conditions could also work for SMA. Regular assessments, centralized shared care pathways, and staff training and empowerment of families for self-management should be central components of all coordination models. Trial registration: German Clinical Trials Register (DRKS): DRKS00018778; Trial registration date 05. December 2019—Retrospectively registered; https://apps.who.int/trialsearch/Trial2.aspx?TrialID=DRKS00018778

Health literacy of trans and gender diverse individuals –a cross sectional survey in Germany

Abstract Introduction To date, there has been little research on the general health literacy of trans and gender diverse individuals, even though previous research undermines the importance of good health literacy in this sample. The aim of the article is therefore to describe the general health literacy of trans and gender diverse individuals based on a German survey. Methods In September 2022, a survey study was conducted in which health literacy was recorded using HLS-EU-16. Data will be presented descriptively; gender differences will be explored using a Χ 2 - test and a univariate analysis of variance (ANOVA). Results Out of N = 223 participants, n = 129 individuals (57.8%) identified as non-binary; n = 49 (22.0%) identified themselves as male, while n = 45 (20.2%) identified as female. Mean age was 28.03 years. Overall, 26.4% of all the participants showed an inadequate health literacy, as proposed by the HLS-EU-16. In trend, health-related task related to media use were more often perceived as easy compared to the German general population. Conclusion Individuals, who identify as trans and gender diverse may have a general health literacy below average compared to the German general population. However, tasks related to media use were perceived as easy, which might be a good starting point for health literacy related interventions. Trial registration DRKS00026249, Date of registration: 15/03/2022

Development and Psychometric Evaluation of a German Version of the PROMIS® Item Banks for Satisfaction With Participation

The Patient Reported Outcomes Measurement Information System (PROMIS) initiative aims to provide reliable and precise item banks measuring patient-reported outcomes in different health domains.The aimof the present work was to provide a German translation of the PROMIS itembanks for satisfaction with participation and to psychometrically test these German versions. Cognitive interviews followed a forward–backward translation. Distribution characteristics, unidimensionality, Rasch model fit, reliability, construct validity, and internal responsiveness were tested in 262 patients with chronic low back pain undergoing rehabilitation. Results for the final 13- and 10-ite

Exploring communication preferences of trans and gender diverse individuals-A qualitative study.

BackgroundTrans and gender-diverse individuals experience adverse health outcomes that might be due, in addition to other factors, to stigma and discrimination in the health care sector. At the same time, the concept of person-centred care acknowledges the role of patient-physician communication in health care outcomes. This study aims to explore patient-physician communication preferences in trans and gender-diverse individuals.MethodA qualitative interview study was conducted, including N = 10 participants between February and March 2022. Participants were interviewed using a semi-structured interview guideline, based on previous knowledge in person-centred care and sample specific communication. Participants were asked about their experiences and wishes in patient-physician centeredness. Analyses were conducting using a qualitative content analysis strategy.ResultsMean age was 29.3 years; n = 6 participants identified themselves within the binary gender concept, while n = 4 identified themselves with a non-binary gender. Communication preferences for patient-physician communication were categorised into four themes: general communication aspects (e.g. active listening); the role of gender during appointments (e.g. appropriate/inappropriate addressing); gender-neutral language (e.g. experiences use of gender neutral language by physicians); own communication style (e.g. early outing and justification). Furthermore, possible contextual factors of patient-physician communication where found (e.g. trusting relationship).ConclusionAdding knowledge to communication preferences of trans and gender-diverse individuals, this study was able to identify preferences that are specific to the sample as well as preferences that differ from the cis-gendered population. However, it remains unclear how the patient-physician communication preferences affects health care utilization and outcomes.Trial registrationGerman Clinical Trial Register (DRKS00026249)

Noise exposure among staff in intensive care units and the effects of unit-based noise management : a monocentric prospective longitudinal study

Abstract Background Intensive care units (ICUs) are often too noisy, exceeding 70–80 dBA, which can have negative effects on staff. The corresponding recommendation of the World Health Organization (average sound pressure level below 35 dBA) is often not achieved. To date there is a lack of intervention studies examining the extent to which unit-based noise management in ICUs contributes to a reduction in noise exposure for the staff. The study therefore aims to provide answers to 1) how unit-based noise management sustainably reduces the subjective noise exposure among staff, and 2) how this intervention affects other noise-related topics. Methods We performed a monocentric prospective longitudinal study with three measurement points in a German university hospital in three ICUs. We collected data from different healthcare professionals and other professional groups between October 2021 and August 2022 using an online questionnaire. Data were analyzed using descriptive and inference statistics. Results A total of n = 179 participants took part in the surveys. The majority of participants were nurses or pediatric nurses. Most participants worked more than 75% full-time equivalent. Staff on the three ICUs reported high levels of noise exposure. No significant changes in noise exposure over time were observed. Participants were already aware of the topic and believed that a behavior change could positively influence the noise environment. Conclusions This study provides an initial insight into how a unit-based noise management could contribute to a reduction in the subjective noise exposure among staff in ICUs. The results of this study highlight the importance of this topic. Future studies should aim to research aspects of adherence and their facilitators or barriers, which promote the sustained implementation of noise-reducing measures by staff. Trial registration German Clinical Trials Register (DRKS): DRKS00025835; Date of registration: 12.08.2021