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This study examined patient and appointment factors as predictors of nonattendance in addiction mental health services. Data were collected from the electronic files of 7,641 patients treated for a substance use disorder in outpatient clinics of an addiction mental health organization in the Netherlands. Negative binomial regression analyses revealed that cocaine use, poly substance use, limitations in interpersonal functioning, presence of anxiety disorder and cluster C personality disorder, age, level of education, source of income, and planning consistency were associated with nonattendance.
This study examined patient and appointment factors as predictors of nonattendance in addiction mental health services. Data were collected from the electronic files of 7,641 patients treated for a substance use disorder in outpatient clinics of an addiction mental health organization in the Netherlands. Negative binomial regression analyses revealed that cocaine use, poly substance use, limitations in interpersonal functioning, presence of anxiety disorder and cluster C personality disorder, age, level of education, source of income, and planning consistency were associated with nonattendance.
Background: Limited information is available on the experiences of patients during rehabilitation after anterior cruciate ligament reconstruction (ACLR). Aim: The current study aimed to identify factors that differentiated positive and negative patient experiences during rehabilitation after ACLR. Method and Design: A survey-based study with an online platform was used to identify factors that differentiated positive and negative patient experiences during rehabilitation after ACLR. Seventy-two patients (age 27.8 [8.8] y) after ACLR participated. Data were analyzed and themes were identified by comparing categories and subcategories on similarity. Main Findings: Positive patient experiences were room for own input, supervision, attention, knowledge, honesty, and professionalism of the physiotherapist. Additionally, a varied and structured rehabilitation program, adequate facilities, and contact with other patients were identified as positive patient experiences. Negative experiences were a lack of attention, lack of professionalism of the physiotherapists, a lack of sport-specific field training, a lack of goal setting, a lack of adequate facilities, and health insurance costs. Conclusions: The current study identified factors that differentiated positive and negative patient experiences during rehabilitation after ACLR. These findings can help physiotherapists in understanding the patient experiences during rehabilitation after ACLR.
Huntington’s disease (HD) and various spinocerebellar ataxias (SCA) are autosomal dominantly inherited neurodegenerative disorders caused by a CAG repeat expansion in the disease-related gene1. The impact of HD and SCA on families and individuals is enormous and far reaching, as patients typically display first symptoms during midlife. HD is characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia. SCAs are mainly characterized by ataxia but also other symptoms including cognitive deficits, similarly affecting quality of life and leading to disability. These problems worsen as the disease progresses and affected individuals are no longer able to work, drive, or care for themselves. It places an enormous burden on their family and caregivers, and patients will require intensive nursing home care when disease progresses, and lifespan is reduced. Although the clinical and pathological phenotypes are distinct for each CAG repeat expansion disorder, it is thought that similar molecular mechanisms underlie the effect of expanded CAG repeats in different genes. The predicted Age of Onset (AO) for both HD, SCA1 and SCA3 (and 5 other CAG-repeat diseases) is based on the polyQ expansion, but the CAG/polyQ determines the AO only for 50% (see figure below). A large variety on AO is observed, especially for the most common range between 40 and 50 repeats11,12. Large differences in onset, especially in the range 40-50 CAGs not only imply that current individual predictions for AO are imprecise (affecting important life decisions that patients need to make and also hampering assessment of potential onset-delaying intervention) but also do offer optimism that (patient-related) factors exist that can delay the onset of disease.To address both items, we need to generate a better model, based on patient-derived cells that generates parameters that not only mirror the CAG-repeat length dependency of these diseases, but that also better predicts inter-patient variations in disease susceptibility and effectiveness of interventions. Hereto, we will use a staggered project design as explained in 5.1, in which we first will determine which cellular and molecular determinants (referred to as landscapes) in isogenic iPSC models are associated with increased CAG repeat lengths using deep-learning algorithms (DLA) (WP1). Hereto, we will use a well characterized control cell line in which we modify the CAG repeat length in the endogenous ataxin-1, Ataxin-3 and Huntingtin gene from wildtype Q repeats to intermediate to adult onset and juvenile polyQ repeats. We will next expand the model with cells from the 3 (SCA1, SCA3, and HD) existing and new cohorts of early-onset, adult-onset and late-onset/intermediate repeat patients for which, besides accurate AO information, also clinical parameters (MRI scans, liquor markers etc) will be (made) available. This will be used for validation and to fine-tune the molecular landscapes (again using DLA) towards the best prediction of individual patient related clinical markers and AO (WP3). The same models and (most relevant) landscapes will also be used for evaluations of novel mutant protein lowering strategies as will emerge from WP4.This overall development process of landscape prediction is an iterative process that involves (a) data processing (WP5) (b) unsupervised data exploration and dimensionality reduction to find patterns in data and create “labels” for similarity and (c) development of data supervised Deep Learning (DL) models for landscape prediction based on the labels from previous step. Each iteration starts with data that is generated and deployed according to FAIR principles, and the developed deep learning system will be instrumental to connect these WPs. Insights in algorithm sensitivity from the predictive models will form the basis for discussion with field experts on the distinction and phenotypic consequences. While full development of accurate diagnostics might go beyond the timespan of the 5 year project, ideally our final landscapes can be used for new genetic counselling: when somebody is positive for the gene, can we use his/her cells, feed it into the generated cell-based model and better predict the AO and severity? While this will answer questions from clinicians and patient communities, it will also generate new ones, which is why we will study the ethical implications of such improved diagnostics in advance (WP6).
Training nurses and midwives to treat their patients well There are some specific factors facilitating the modification of the nursing and midwifery bachelor curriculum The development of health literacy and respectful and compassionate care competences among bachelor nursing and midwifery students in Tanzania
Being diagnosed with incurable cancer often leads to experiences of contingency and to existential concerns when patients struggle to search for meaning. The aims of this project are to (1) investigate how Art-Based Learning(ABL) – an art education method for experiencing art – has the potential to affect meaning-making processes of cancer patients in palliative care; (2) to investigate how to integrate this in (patient) education programs; (3) to enable health and art professionals to extent their capabilities to care for PC patients. This project builds on previous research on contingent experiences and narrative meaning-making, and on a pilot-study regarding the feasibility of carrying out ABL in PC. Aims and questions have been developed in a long-lasting process of problem analysis with PC and art education professionals, patients, and researchers. We will a) conduct participatory research to make an inventory of considerations that play a role in designing an art exhibition for the purpose of ABL among patients with advanced cancer, resulting in a manual to be used in future practice and research; b) conduct an explorative study and evaluate which factors hinder and promote patients’ meaning- making processes in online/on-site interventions; c) conduct a formal analysis of patients’ experiences with regards to meaning-making; d) formally compile a full list of conclusion and advices and embed the result in a new educational program for PC and art education professionals. This project is led by the professorship Art education as Critical Tactics(ArtEZ University of the Arts) and is carried out by a consortium of experts and complementary partners: University of Amsterdam and University of Twente (research partners); Amsterdam University Medical Centers, Amsterdam Museum, Museum Arnhem, Museum Jan Cunen, Leren van Kunst (public institutional partners); Vrije Universiteit Amsterdam, Radboud University, Story Lab-University Twente (knowledge experts); Living with Hope, SPKS, NFK(experience experts/patients advocacy).