Don't be late! Postponing cognitive decline and preventing early unemployment in people with multiple sclerosis: a study protocol.

BACKGROUND: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS. AIMS: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL). METHODS: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions. DISCUSSION: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice. TRIAL REGISTRATION: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023.

Don't be late! Timely identification of cognitive impairment in people with multiple sclerosis: a study protocol.

BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener©, has recently been developed. The aim of the current study is to validate the Multiple Screener© in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener© is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener© in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.

Communication about euthanasia in Dutch nursing homes.

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one's own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

Recovery-oriented care in Teams Working with the ART Model in long-term Mental Health care: A Qualitative Study on the Experiences of Service Users and Their Significant Others.

The Active Recovery Triad (ART) model provides a framework for recovery-oriented care in long-term mental health settings. The aim of this study is to gain insight into the experiences and views of service users and their significant others regarding care and support they receive from teams working with the ART model. Semi-structured interviews were performed with nineteen service users and five significant others of teams operating in Dutch long-term mental health care. Data were analyzed using thematic analysis. The three core principles of the ART model formed the deductive basis of the analysis and for every principle themes were identified inductively. Under the principle 'Active', service users mentioned that they feel motivated, work actively on personal recovery goals and have dreams for the future. Service users valued the service as a safe environment, but several service users also preferred to live more independently. Under the principle 'Recovery', participants reported how the dimensions of recovery (health, personal identity, daily life and community functioning) were addressed in care and support. Also, specific conditions for recovery-oriented care were identified, for example regarding specific expertise of care providers. Under the principle 'Triad' the support from significant others, contact with care workers and with other service users were identified as important. The insights regarding what is important for service users and their significant others may contribute to the improvement of care and support in long-term mental health care. In addition, the findings of this study provide directions for the further development of the ART model.

Diversity in Advance Care Planning and End-Of-Life Conversations: Discourses of Healthcare Professionals and Researchers.

To meet the end-of-life needs of all patients, ongoing conversations about values and preferences regarding end-of-life care are essential. Aspects of social identity are associated with disparities in end-of-life care outcomes. Therefore, accounting for patient diversity in advance care planning and end-of-life conversations is important for equitable end-of-life practices. We conducted 16 semi-structured interviews to explore how Dutch healthcare professionals and researchers conceptualized diversity in advance care planning and end-of-life conversations and how they envision diversity-responsive end-of-life care and research. Using thematic discourse analysis, we identified five 'diversity discourses': the categorical discourse; the diversity as a determinant discourse; the diversity in norms and values discourse; the everyone is unique discourse, and the anti-essentialist discourse. These discourses may have distinct implications for diversity-responsive end-of-life conversations, care and research. Awareness and reflection on these discourses may contribute to more inclusive end-of-life practices.

Self-perceived functioning, goals and action plans: an evaluation of an ICF-based E-health application in an intervention for people with a combination of mental and physical health conditions.

PURPOSE: In the BigMove intervention, people with physical and mental health conditions assess their functioning, set goals, and define action plans to achieve their goals recorded in an e-health application using all categories of the International Classification of Functioning, Disability, and Health (ICF). This study investigates whether data from this application can provide insight into participants' self-perceived functioning, goals and action plans and observe changes over time. METHODS: Data from 446 participants were analysed with descriptive statistics to describe self-perceived functioning and the ICF categories related to the 15 most frequently chosen goals. Action plans were analysed using inductive analysis. Changes over time were investigated by comparing assessments before and after at least 4 months in the intervention. RESULTS: The data provided insight into the self-perceived functioning, goals and action plans. Also, changes over time were observed. Self-perceived functioning changed from being mainly negative before, to mainly positive after the intervention. While goals were mostly related to the same ICF categories, the action plans changed from more specific short-term to more general long-term plans. CONCLUSIONS: Our study demonstrates that all categories of the ICF can be used to record self-perceived functioning, goals and action plans and monitor changes over time.

The complete International Classification of Functioning, Disability, and Health (ICF) can provide a useful tool to record self-perceived functioning, goals, and action plans.Setting goals by using all ICF categories shows what is relevant to people themselves and can stimulate activities that foster functioning according to what people value.Assessments of self-perceived functioning, related goals, and action plans offer a novel approach to assessing health and comparing healthcare outcomes.

The BigMove Intervention for People With Physical and Mental Health Conditions: A First Evaluation of Self-Perceived Health, Quality of Life, Coping and Mental and Social Functioning.

Background: The BigMove intervention aims to improve the functioning and quality of life of people with physical and mental health conditions via an integrated care approach. This pilot study evaluates the impact of the intervention on self-perceived health (SPH), quality of life (QoL), active coping behaviour, and mental and social functioning. Methods: Data were analysed from N = 457 participants who had been referred to the intervention by their general practitioner (mean age 48.98 years; 76% female). Three patient-reported and one clinician-rated measures were used: SPH, QoL (MANSA), active coping behaviour (UPCC-ACT), mental and social functioning (HoNOS). Pre- and post-intervention measurements (from 2011 to 2018) were compared using paired-samples t-tests. Due to missing data, analyses were conducted with 205-257 participants per completed outcome. Associations with age and sex were assessed using repeated-measures ANOVA. Clinically relevant change was evaluated with the Edwards-Nunnally index and standard error of measurement (SEM) scores. Results: Post-intervention, there were statistically significant improvements for all outcomes (p < 0.0001) with moderate to large effect sizes (d = 0.41 to 1.02). The observed changes in outcomes can be considered as clinically relevant improvements. Conclusion: This pilot study provides preliminary evidence that the intervention has positive effects on SPH, QoL, active coping behaviour, and mental and social functioning.

Recovery-oriented care in long-term mental health settings: Relationship between the active recovery triad (ART) model, recovery-oriented care, and recovery of service users.

OBJECTIVE: The active recovery triad (ART) model provides guidelines for recovery-oriented care in long-term mental health care. The aim of this study is to evaluate whether compliance to the principles of the ART model is related to recovery-oriented care, service user recovery and satisfaction. METHOD: A prospective study was conducted including two measurements, in which we investigated compliance to the principles of the ART model (ART fidelity), recovery-oriented care as measured by the Recovery-Oriented Practices Index-Revised (ROPI-R) at team level (n = 18) and outcome measures on service user level (n = 101) related to personal recovery, social roles, level of functioning, clinical recovery, transition, and satisfaction. We used multilevel modeling to evaluate these relationships. RESULTS: There was a significant association between active recovery triad (ART) fidelity and the ROPI-R. We did not find a significant association between overall ART fidelity and service user outcomes. Yet, we did find that higher ART fidelity in the domains "cooperation in the triad," "professionalization of staff," and "team structure" were related to improved clinical recovery, functioning, social roles, and performance of activities. However, higher ART fidelity in the domain "healing environment" was related to poorer functioning, and a higher score in the domain "safety and prevention of coercion" was related to poorer social roles and performance of activities. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: We can conclude that compliance to the principles of the ART model is related to recovery-oriented care, measured with the ROPI-R. In addition, the findings suggest that in particular elements in the ART model are related to meaningful recovery outcomes. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

From Model to Practice: A Qualitative Study on Factors Influencing the Implementation of the Active Recovery Triad (ART) Model in Long-Term Mental Health Care.

Background: The Active Recovery Triad (ART) model provides a framework for recovery-oriented care in the long-term mental health setting. The aim of this study is to gain insight into factors influencing the implementation process of the ART model. Methods: Focus groups were conducted with fourteen multidisciplinary teams that were in the process of implementing the ART model. Data were thematically analyzed. Results: Three phases of implementation were identified. In the first phase, getting started, support from both the top of the organization and the care workers, sufficient information to care workers, service users, and significant others, and creating momentum were considered crucial factors. In the second phase, during implementation, a stable team with a good team spirit, leadership and ambassadors, prioritizing goals, sufficient tools and training, and overcoming structural limitations in large organizations were seen as important factors. In the third phase, striving for sustainability, dealing with setbacks, maintaining attention to the ART model, and exchange with other teams and organizations were mentioned as core factors. Conclusions: The findings may support teams in making the shift from traditional care approaches towards recovery-oriented care in long-term mental health care.

Compassionate care through the eyes of patients and physicians: An interview study.

BACKGROUND: Although compassion is a crucial element of physicians' professional performance and high-quality care, research shows it often remains an unmet need of patients. Understanding patients' and physicians' perspectives on compassionate care may provide insights that can be used to foster physicians' ability to respond to patients' compassion needs. Therefore, this study aims to understand how both patients and physicians experience the concept and practice of compassionate care. METHODS: We conducted semi-structured interviews with eight patients and ten resident physicians at a University Medical Center in the Netherlands. Using thematic analysis, we separately coded patient and resident transcripts to identify themes capturing their experiences of compassionate care. This study was part of a larger project to develop an educational intervention to improve compassion in residents. RESULTS: For both patients and residents, we identified four themes encompassing compassionate care: being there, empathizing, actions to relieve patients' suffering, and connection. For residents, a fifth theme was professional fulfillment (resulting from compassionate care). Although patients and residents both emphasized the importance of compassionate care, patients did not always perceive the physician-patient encounter as compassionate. According to residents, high workloads and time pressures hindered their ability to provide compassionate care. DISCUSSION AND CONCLUSION: Patients and residents have similar and varying understandings of compassionate care at the same time. Understanding these differences can aid compassion in medical practice. Based on the findings, three topics are suggested to improve compassion in residents: (1) train residents how to ask for patients' compassion needs, (2) address residents' limiting beliefs about the concept and practice of compassion, and (3) acknowledge the art and science of medicine cannot be separated.