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

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 .

Availability and quality of assessment instruments on patient-centredness in older adults with multimorbidity: a systematic review.

OBJECTIVE: Patient-centredness (PC) is central to the health care of older adults with multimorbidity, but knowledge about the psychometric quality of instruments measuring it in this group is scarce. Based on an integrative model of PC, we aimed to identify assessment instruments of PC for this particular group and evaluate their psychometric properties. METHODS: We systematically searched six electronic databases (MEDLINE, CINAHL, EMBASE, PsycINFO, Web of Science and PSYNDEX), initially covering research published up to 2018 and updated later to include work up to July 2022. In evaluating the psychometric properties of identified instruments, we followed the COSMIN methodology. RESULTS: We identified 12 studies reporting on 10 instruments measuring PC in the health care of older adults with multimorbidity. For these instruments, structural validity and internal consistency were the psychometric properties reported most often. Based on the COSMIN criteria, eight instruments received favourable ratings for internal consistency with respect to methodological quality ('very good'), measurement property ('sufficient') and overall quality of evidence ('moderate'). Ratings of structural validity varied more largely, with three to seven instruments showing at least adequate methodological quality, sufficient structural validity or moderate quality of evidence. CONCLUSIONS: Similar to comparable previous reviews, evidence on the psychometric properties of instruments assessing PC in the health care of older adults with multimorbidity was rather limited. Informed by comprehensive models of PC, further research should aim at developing measures of PC that stand out on a broader range of psychometric properties.

The German pediatric integrated care survey (PICS-D): Translation, adaptation, and psychometric testing.

Background: Integrated care models aim to strengthen the collaboration between healthcare sectors to ensure a higher quality of care for children with chronic conditions. Assessing pediatric healthcare integration through families' experiences, therefore, is essential. Our study aimed to psychometrically test the PICS-D, the first German-language integrated care questionnaire, which is based on the Pediatric Integrated Care Survey (PICS) developed in the USA. Methods: We examined construct validity using exploratory and confirmatory factor analyses (structural validity). Cronbach's α and McDonald's ω t coefficients explored reliability. Cognitive interviews assessed wording comprehension and item appropriateness. Results: PICS-D was completed by 204 caregivers of children with chronic conditions (women = 84%; mean age = 41.4 years). Factor analyses identified 3 factors: "Team quality & communication", "Family impact", and "Access to care". The 3-factorial structure showed a satisfying fit to confirmatory classical-test-theory-based models. Due to the insufficient reliability of the third factor, we recommend using only factors 1 and 2 for scoring the PICS-D. Conclusion: The PICS-D is a 13-item questionnaire to assess family-reported experiences in pediatric care integration, which has good psychometric properties. It may be useful in guiding quality improvement efforts or measuring the impact of a care plan or care model.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.

Primary dementia care based on the individual needs of the patient: study protocol of the cluster randomized controlled trial, DemStepCare.

BACKGROUND: Most people with dementia (PwD) are cared for at home, with general practitioners (GPs) playing a key part in the treatment. However, primary dementia care suffers from a number of shortcomings: Often, diagnoses are made too late and therapies by GPs do not follow the guidelines. In cases of acute crises, PwD are too often admitted to hospital with adverse effects on the further course of the disease. The aim of this study is to implement and evaluate a new GP-based, complex dementia care model, DemStepCare. DemStepCare aims to ensure demand-oriented, stepped care for PwD and their caregivers. METHODS/DESIGN: In a cluster randomized controlled trial, the care of PwD receiving a complex intervention, where the GP is supported by a multi-professional team, is compared to (slightly expanded) usual care. GPs are clustered by GP practice, with 120 GP practices participating in total. GP practices are randomized to an intervention or a control group. 800 PwD are to be included per group. Recruitment takes place in Rhineland-Palatinate, Germany. In addition, a second control group with at least 800 PwD will be formed using aggregated routine data from German health insurance companies. The intervention comprises the training of GPs, case management including repeated risk assessment of the patients' care situation, the demand-oriented service of an outpatient clinic, an electronic case record, external medication analyses and a link to regional support services. The primary aims of the intervention are to positively influence the quality of life for PwD, to reduce the caregivers' burden, and to reduce the days spent in hospital. Secondary endpoints address medication adequacy and GPs' attitudes and sensitivity towards dementia, among others. DISCUSSION: The GP-based dementia care model DemStepCare is intended to combine a number of promising interventions to provide a complex, stepped intervention that follows the individual needs of PwD and their caregivers. Its effectiveness and feasibility will be assessed in a formative and a summative evaluation. TRIAL REGISTRATION: German Register of Clinical Trials (Deutsches Register Klinischer Studien, DRKS), DRKS00023560 . Registered 13 November 2020 - Retrospectively registered. HTML&TRIAL_ID=DRKS00023560.

Tackling the plastic problem: A review on perceptions, behaviors, and interventions.

The excessive production and consumption of plastic has serious consequences on the environment and human health. The reduction of plastic has therefore become a major global challenge. As technical solutions might be insufficient to curb the problem, a perspective highlighting the impact of human behavior is needed. The current literature review provides an overview of the existing social-scientific literature on plastic, ranging from risk awareness, consumers' preferences, and predictors of usage behavior to political and psychological intervention strategies. By reviewing the literature, we aim to identify potential factors for future interventions to reduce plastic consumption. The 187 studies reviewed show that people much appreciate and routinely use plastic, despite a pronounced awareness of the associated problems. Habits, norms, and situational factors seem to be especially predictive for plastic consumption behavior. Both political and psychological interventions are potentially effective, although long-term effects are often uncertain. The review closes with implications for behavior-based solutions and future research, which should combine interdisciplinary approaches and take into account cultural differences.