OBJECTIVE: To reach consensus on the most important biopsychosocial factors that influence functional capacity results in patients with chronic nonspecific musculoskeletal pain, arranged in the framework of the International Classification of Functioning, Disability and Health.DESIGN: Three-round, internet-based Delphi survey.SETTING: Not applicable.PARTICIPANTS: Participants were scientists, clinicians, and patients familiar with functional capacity testing. Scientists were invited through purposive sampling based on the number of relevant publications in peer-reviewed journals. The scientists recruited clinicians and patients through snowball sampling.INTERVENTIONS: Not applicable.MAIN OUTCOME MEASURES: Consensus was reached if at least moderate influence (25%) was achieved and an interquartile range of no more than 1 point was reached.RESULTS: Thirty-three scientists, 21 clinicians, and 21 patients from 9 countries participated. Participants reached consensus on 6 factors that can influence the outcome of the lifting test, having a median of severe influence (50%-95%): catastrophic thoughts and fear, patient adherence to "doctor's orders," internal and external motivation, muscle power, chronic pain behavior, and avoidance behavior. Motivation, chronic pain behavior, and sensation of pain were the top 3 factors affecting postural tolerance and repetitive movement functional capacity tests. Furthermore, participants reported 28 factors having a median of moderate influence (25%-49%) that could influence the outcome of lifting, postural tolerance, and repetitive movement tests.CONCLUSIONS: Overall, chronic pain behavior, motivation, and sensation of pain are the main factors that can influence functional capacity results. We recommend that scientists and clinicians, respectively, consider the most important factors when planning future studies and when interpreting functional capacity test results.
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Background: The number of people with multiple chronic conditions demanding primary care services is increasing. To deal with the complex health care demands of these people, professionals from different disciplines collaborate. This study aims to explore influential factors regarding interprofessional collaboration related to care plan development in primary care. Methods: A qualitative study, including four semi-structured focus group interviews (n = 4). In total, a heterogeneous group of experts (n = 16) and health care professionals (n = 15) participated. Participants discussed viewpoints, barriers, and facilitators regarding interprofessional collaboration related to care plan development. The data were analysed by means of inductive content analysis. Results: The findings show a variety of factors influencing the interprofessional collaboration in developing a care plan. Factors can be divided into 5 key categories: (1) patient-related factors: active role, self-management, goals and wishes, membership of the team; (2) professional-related factors: individual competences, domain thinking, motivation; (3) interpersonal factors: language differences, knowing each other, trust and respect, and motivation; (4) organisational factors: structure, composition, time, shared vision, leadership and administrative support; and (5) external factors: education, culture, hierarchy, domain thinking, law and regulations, finance, technology and ICT. Conclusions: Improving interprofessional collaboration regarding care plan development calls for an integral approach including patient- and professional related factors, interpersonal, organisational, and external factors. Further, the leader of the team seems to play a key role in watching the patient perspective, organising and coordinating interprofessional collaborations, and guiding the team through developments. The results of this study can be used as input for developing tools and interventions targeted at executing and improving interprofessional collaboration related to care plan development.
Purpose In recent years, the effects of the physical environment on the healing process and well-being has proved to be increasingly relevant for the patient, family, carers (PFC), and staff. Moreover, it is a growing concern among health care providers, environmental psychologist, consultants, qualified installers of technologies, and architects. These concerns are about the traditional, institutionally designed health care facilities (HCF) in relation to the well-being of patients. Different studies have found that an improved design of the built environment can enhance the safety and quality, satisfaction of this so-called healing environments. This is an overview of the evidence presented in the literature on healing environments. The scientific research on evidence-based design is ordered and structured. Method The Cochrane Methodology1 was used to search data. Pubmed [Medline], Jstor, and Scopus were searched for relevant articles. A total of 54 keywords were used and structured in four groups, patient, staff, environmental factors, and relevant authors. After eliminating duplicate articles, the remaining articles were examined for further selection. At the final stage, articles were selected based on title and abstract that referred to the physical environment of healthcare facilities in the title and the abstract. To order and structure the evidence regarding healing environments, the framework of integrated building design by Rutten2 and Ulrich3,4 was used and adapted. The studies included in the review were subdivided into two groups, PFC-outcomes and staff outcomes by using methodology according to the pyramid of evidence5 . Results & Discussion Results illustrate the effects of different aspects and dimensions that deal with the physical environmental factors of HFC on PFC and staff. A total of 798 papers were found to fit the inclusion criteria. Of these, 68 articles were selected for the review: less than 50% were classified with a high level of evidence, and 87% were included in the group of PFC-outcomes. The study demonstrates that evidence of staff outcomes is scarce or insufficiently substantiated. With the development of a more customer-oriented management approach to HCF, these results are important for the design and construction of HCF. Some design features to be addressed are: identical rooms, single-patient rooms; and lighting. For future research, the main challenge is to investigate and specify staff needs and integrate these needs into the built environment of HCF.
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).
