Annelien A Duits’s research while affiliated with Radboud University Medical Centre (Radboudumc) and other places

Background Cognitive impairment in Parkinson's disease (PD) is a key non‐motor complication during the disease course. Objectives A review of detailed cognitive instruments to detect mild cognitive impairment (PD‐MCI) or dementia (PDD) is needed to establish optimal tests that facilitate diagnostic accuracy. Methods We performed a systematic literature review of tests that assess memory, language including premorbid intelligence, and visuospatial domains (for tests of attention and executive functions see accompanying review) to determine suitability to assess cognition in PD. Based on in‐depth scrutiny of psychometric and other relevant clinimetric properties, tests were rated as “recommended,” “recommended with caveats,” “suggested,” or “listed” by the International Parkinson and Movement Disorder Society (IPMDS) panel of experts according to the IPMDS Clinical Outcome Assessment Scientific Evaluation Committee guidelines. Results We included 39 tests encompassing 48 outcome measures. Seven tests (different versions or subtests of the test counted once) were recommended, including four for memory, one for visuospatial domains, one for language (including three measures), and one for estimated premorbid intelligence. Furthermore, 10 tests (12 measures) were “recommended with caveats,” 11 were “suggested,” and 11 (15 measures) were “listed.” Conclusions Recommended neuropsychological tests in memory, visuospatial functions, and language are proposed to guide the assessment of cognitive impairment and its progression in PD‐MCI and PDD, and for use in clinical trials to stratify participants or as outcome measures. Novel measures being developed will need extensive validation research to be “recommended.” © 2025 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

Background Conventional medical management, while essential, cannot address all multifaceted consequences of Parkinson’s disease (PD). This pilot study explores the potential of a co-designed creative arts therapy on health-related quality of life, well-being, and pertinent non-motor symptoms. Methods We conducted an exploratory pilot study with a pre-post design using validated questionnaires. Eight individuals with PD participated in the program. The investigated intervention was a 10-week creative arts therapy with weekly 90–120-min sessions, guided by three creative therapists. Participants were allowed to autonomously select from multiple creative media based on their personal preferences. Explored co-primary outcomes included health-related quality of life (PDQ-39), well-being (ICECAP-A), anxiety/depression (HADS), executive functioning (BRIEF-A), resilience/mental flexibility (FIT-60), and self-efficacy (GSES). We used paired sample t tests for pre–post analysis of the co-primary outcomes and Wilcoxon signed-rank tests for PDQ-39 sub-scores. We also included aesthetic responsiveness (AReA) and healthcare consumption (IMCQ adapted for PD) questionnaires reported as descriptive statistics. Results The results showed a significant reduction in anxiety and an increase in well-being. We also observed a slight improvement in cognitive functioning. Finally, we noted a reduction in healthcare consumption (fewer visits at neurologists, specialized PD nurses, and allied healthcare professionals). Conclusion These findings cautiously suggest that our co-designed, multi-media creative arts therapy has the potential to increase well-being and reduce anxiety, while reducing healthcare consumption. These preliminary findings support the need for a larger, randomized controlled trial to explore the therapeutic potential of creative arts therapy in PD care.

Background Recent research in the field of “Arts and Health” has demonstrated the beneficial impact of arts-based interventions on health and well-being across diverse populations. Recognizing their potential, especially in cases where conventional healthcare cannot address the multifaceted impact of conditions such as in Parkinson's disease (PD), our study advocates for an integrative approach in medical practice and neuroscience. We recommend incorporating learning environments from the design phase through long-term care. The arts offer a unique opportunity to create such environments. In this study, we specifically focus on individuals with PD, co-designing an intervention as a creative engagement learning environment and a PD-specific creative arts therapy. In this study, the narratives of those affected contribute as scientific knowledge, shaping care and increasing the intervention's relevance to participants' lives. Methods We used a participatory design-based research approach. Fourteen individuals with PD, along with three creative therapists and three researchers, collaborated through iterative design cycles to co-develop a creative arts therapy intervention. Qualitative data were collected through interviews, group reflections, and ethnographic observations. Data were analyzed using reflexive thematic analysis. Results The co-creation process resulted in a 10-week creative engagement intervention delivered in a “creative playground” setting. Participants chose from multiple media and autonomously decided their creative activities. Guidance from the creative therapists was provided as needed to support individual engagement and guide reflection and learning processes. Narratives offered insights into the relevance of autonomy in care, the role of the arts, and the individuality of disease experience, resulting in seven key features of our intervention framework, which include (i) intervention structure (e.g., duration of the intervention and sessions), (ii) freedom in selection of creative media, (iii) environment as a creative playground, (iv) skills of creative therapists, (v) PD-specific considerations, (vi) financial considerations and logistics, and we list (vii) responsibilities of the Design Team. Discussion This study establishes an initial framework for a PD-specific creative arts therapy intervention designed as a creative engagement learning environment. Future research will focus on rigorously evaluating its effectiveness and exploring its scalability in diverse settings.

Objective This study aimed to investigate the prevalence and nature of cognitive impairment among severely ill COVID-19 patients and the effectiveness of the Montreal Cognitive Assessment (MoCA) in detecting it. Method We evaluated cognition in COVID-19 patients hospitalized during the first wave (March to June 2020) from six Dutch hospitals, nine months post-discharge, using a comprehensive multi-domain neuropsychological test battery. Test performance was corrected for sex, age, and education differences and transformed into z -scores. Scores within each cognitive domain were averaged and categorized as average and above ( z -score ≥ −0.84), low average ( z -score −1.28 to − 0.84), below average ( z -score −1.65 to −1.28), and exceptionally low ( z -score < −1.65). Patients were classified with cognitive impairment if at least one domain’s z -score fell below −1.65. We assessed the MoCA’s accuracy using both the original cutoff (<26) and an “optimal” cutoff determined by Youden’s index. Results Cognitive impairment was found in 12.1% (24/199) of patients, with verbal memory and mental speed most affected (6.5% and 7% below −1.65, respectively). The MoCA had an area under the curve of 0.84. The original cutoff showed sensitivity of 83% and specificity of 66%. Using the identified optimal cutoff of <24, maintained sensitivity while improving specificity to 81%. Conclusions Cognitive impairment prevalence in initially hospitalized COVID-19 patients is lower than initially expected. Verbal memory and processing speed are primarily affected. The MoCA is a valuable screening tool for these impairments and lowering the MoCA cutoff to <24 improves specificity.

Background Growing up with a parent with Huntington's disease (HD) profoundly impacts children. However, this impact and children's needs are often misunderstood, even by professional services. Even when resources are available, children often feel that their needs are unmet, raising concerns about the adequacy of available guidance and support. Objective This study aims to offer an in-depth understanding of the multifaceted impact of growing up with a parent with HD, examining the needs for professional guidance on emotional and social aspects, and identifying specific areas where support can be improved to better aid them. Methods This retrospective study utilized an exploratory sequential mixed methods design, combining qualitative focus groups ( n = 13) and a quantitative survey ( n = 23). Qualitative data were analyzed using an inductive thematic analysis with a descriptive phenomenological approach. Quantitative data were analyzed using descriptive statistics. Results The impact of HD on children extends across various domains, affecting self-development, social interactions, and family dynamics. Support received at home varied, with limited access to professional help. Support needs primarily revolved around emotional support and access to comprehensive information. Key support providers, such as parents, peers, mentors, healthcare providers and coaches with expertise in HD, play crucial roles in addressing these needs. Conclusions The study underscores challenges faced by children in HD families. By centering our efforts on the emotional well-being of these children, offering tailored information, involving their social network, providing community-based support, and strengthening parental support systems, we can improve the support required by children in these families.

Aim To investigate the experiences of people with Parkinson's disease in coping with and adapting to their disease and to identify considerations for a tailored self‐management support program. Design A descriptive phenomenological focus group study. Methods Five semi‐structured focus groups were conducted between April 2023 and June 2023 in the Netherlands, with 12 people with Parkinson's disease. Two researchers independently performed an inductive content analysis. Results Three principal categories emerged: (1) Rational realisation versus emotional experience: the coping strategy transition. This category includes three main coping strategies: denial or avoidance coping, acknowledging with less active coping and proactive and task‐oriented coping. (2) Factors that influence coping, including mindset and skills, social circles and communication and access to support and care. (3) Considerations for successful self‐management of Parkinson's disease, highlighting key areas such as psycho‐emotional guidance, nutrition and lifestyle, peer support and maintaining autonomy and sense of identity. Conclusion Coping and adaptation strategies are individual and dynamic processes, with multiple key or turning points during the transition between strategies. Tailored self‐management support can enhance coping abilities during these transitions, fostering adaptation to a life with Parkinson's disease. Implications for the Profession and/or Patient Care A patient‐focused version of an existing blended self‐management support program for family caregivers will be developed, which will be delivered by healthcare professionals. Impact This study can help healthcare professionals tailor support for people with Parkinson's disease, emphasising their role in facilitating coping and adaptation. Enhancing self‐management can improve self‐efficacy, quality of life and potentially reduce healthcare utilisation in people with Parkinson's disease. Reporting Method Findings are reported according to the COREQ guidelines. Patient or Public Contribution Patients and Parkinson's disease experts participated in the preparation and implications of the findings. All participants could contribute to the self‐management support program, either through video interviews or content feedback.