Background As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being... Show moreBackground As a first step to reach consensus on the key constructs and outcomes in neuro-oncology caregiver research, we performed a systematic review to evaluate the constructs that are being evaluated in research studies and how these have been assessed. Methods All peer-reviewed publications with primary data reporting on outcomes of family caregivers of adult primary brain tumor patients were eligible. Electronic databases PubMed/Medline, Embase, Web of Science, Emcare, Cochrane Library, and PsycINFO were searched up to September 2021. Using Covidence, title and abstract screening, full-text review, and data extraction were done by two researchers independently, with a third guiding consensus. Constructs as reported in each study, and how these were assessed were the primary result. Results Searches yielded 1090 unique records, with 213 remaining after title/abstract screening. Of these, 157 publications met inclusion criteria, comprising 120 unique studies. These originated from 18 countries and were published between 1996 and 2022. Most were observational (75%) cross-sectional (61%) studies, reporting on quantitative methods (62%). Twenty-seven different constructs were assessed and mapped along the Caregiver Health Model (CGHM) categories, namely, caregiver health, needs, tasks, beliefs and attitudes, and environment. Seventeen questionnaires were used >2 times to measure the same construct, with the vast majority of questionnaires only used across one or two studies. Conclusions Neuro-oncology caregiving research is a field gaining traction, but lags behind in clear definition of key constructs, and consistency in assessment of these constructs. Developing consensus or guidance will improve comparability of studies, meta-analyses, and advance the science more quickly. Show less
Adrenal crisis is the most severe manifestation of adrenal insufficiency (AI), but AI can present with variable signs and symptoms of gradual severity. Despite current hormone replacement... Show moreAdrenal crisis is the most severe manifestation of adrenal insufficiency (AI), but AI can present with variable signs and symptoms of gradual severity. Despite current hormone replacement strategies, adrenal crisis is still one of the leading causes of mortality in AI patients. Although underlying factors explaining differences in interindividual susceptibility are not completely understood, several subgroups are particularly vulnerable to adrenal crises, such as patients with primary AI, and patients treated for Cushing's syndrome. Currently, the health care professional faces several challenges in the care for AI patients, including the lack of reliable biomarkers measuring tissue cortisol concentrations, absence of a universally used definition for adrenal crisis, and lack of clinical tools to identify individual patients at increased risk. Also from the patient's perspective, there are a number of steps to be taken in order to increase and evaluate self-management skills and, finally, improve health-related quality of life (HR-QoL). In this respect, the fact that inadequate handling of AI patients during stressful situations is a direct consequence of not remembering how to act due to severe weakness and cognitive dysfunction in the context of the adrenal crisis is quite underexposed. In this narrative review, we give an overview of different clinical aspects of adrenal crisis, and discuss challenges and unmet needs in the management of AI and the adrenal crisis from both the doctor's and patient's perspective. For the latter, we use original focus group data. Integration of doctor's and patient's perspectives is key for successful improvement of HR-QoL in patients with AI. Show less
Smit, M.; Albanese, A.; Benson, M.; Edwards, M.J.; Graessner, H.; Hutchinson, M.; ... ; Collaborative Working Grp 2021
Improved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in... Show moreImproved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in pathophysiology into biomarkers, and how to develop an evidence base for current and novel treatments. These challenges are made greater by the realization of the wide spectrum of symptoms and difficulties faced by people with dystonia, which go well-beyond motor symptoms. A network of clinicians, scientists, and patients could provide resources to facilitate information exchange at different levels, share mutual experiences, and support each other's innovative projects. In the past, collaborative initiatives have been launched, including the American Dystonia Coalition, the European Cooperation in Science and Technology (COST-which however only existed for a limited time), and the Dutch DystonieNet project. The European Reference Network on Rare Neurological Diseases includes dystonia among other rare conditions affecting the central nervous system in a dedicated stream. Currently, we aim to broaden the scope of these initiatives to a comprehensive European level by further expanding the DystoniaNet network, in close collaboration with the ERN-RND. In line with the ERN-RND, the mission of DystoniaNet Europe is to improve care and quality of life for people with dystonia by, among other endeavors, facilitating access to specialized care, overcoming the disparity in education of medical professionals, and serving as a solid platform to foster international clinical and research collaborations. In this review, both professionals within the dystonia field and patients and caregivers representing Dystonia Europe highlight important unsolved issues and promising new strategies and the role that a European network can play in activating them. Show less
Aim:To describe the course of depressive symptoms during the first 12 months post-stroke and its association with unmet needs. Methods:A prospective cohort study among stroke patients admitted to... Show moreAim:To describe the course of depressive symptoms during the first 12 months post-stroke and its association with unmet needs. Methods:A prospective cohort study among stroke patients admitted to inpatient rehabilitation. Depressive symptoms were assessed 3, 6, and 12 months post-stroke using the Hospital Anxiety and Depression Scale, and categorized into three trajectories: no (all times <8), non-consistent (one or two times >= 8), or persistent (all times >= 8) depressive symptoms. Unmet needs were assessed using the Longer-Term Unmet Needs questionnaire. Multivariable logistic regression analyses were used to investigate the association between depressive symptoms and unmet needs. Results:One hundred and fifty-one patients were included, of whom 95 (62.9%), 38 (25.2%), and 18 (11.9%) had no, non-consistent, or persistent depressive symptoms, respectively. Depressive symptoms three months post-stroke persisted in 43.9% and recurred in 19.5% of patients during the first 12 months post-stroke. Depressive symptoms were significantly associated with the occurrence and number of unmet needs (odds ratio 6.49;p = 0.003 and odds ratio 1.28;p = 0.005, respectively). Conclusions:Depressive symptoms three months post-stroke were likely to persist or recur during the first 12 months post-stroke. Depressive symptoms are associated with unmet needs. These results suggest that routine monitoring of depressive symptoms and unmet needs should be considered post-stroke. Show less
