Age and gender differences in non-motor symptoms in people with Parkinson's disease.

Background: Non-motor symptoms of Parkinson's disease (PD) are highly prevalent and heterogenic. Previous studies aimed to gain more insight on this heterogeneity by investigating age and gender differences in non-motor symptom severity, but findings were inconsistent. Furthermore, besides examining the single effects of age and gender, the interaction between them in relation to non-motor functioning has -as far as we know- not been investigated before. Objectives: To investigate the association of age and gender identity -as well as the interaction between age and gender identity- with non-motor symptoms and their impact on quality of life. Methods: We combined three large and independent studies. This approach resulted in a total number of unique participants of 1,509. We used linear regression models to assess the association of age and gender identity, and their interaction, with non-motor symptoms and their impact on quality of life. Results: Older people with PD generally had worse cognitive functioning, worse autonomic functioning and worse quality of life. Women with PD generally experienced more anxiety, worse autonomic functioning and worse quality of life compared to men with PD, whereas men with PD generally had worse cognitive functioning. In interaction analyses by age and gender identity, depressive symptoms and anxiety were disproportionally worse with increasing age in women compared to men. Conclusion: Our findings indicate that both age and gender -as well as their interaction- are differentially associated with non-motor symptoms of PD. Both research and clinical practice should pay more attention to demographic subgroups differences and possible different treatment approaches with respect to age and gender. We showed how combining datasets is of added value in this kind of analyses and encourage others to use similar approaches.

Gender-aware Parkinson's care: a design-based study of patient perspectives on gender norms and gender-sensitive care.

Background: Gender dimensions are progressively recognised as a relevant social determinant of health in people with Parkinson's disease (PD). However, little is known about the impact of gender norms and stereotypes on illness experiences of men and women with PD and what they consider important focal points for gender-sensitive PD care. Methods: We conducted two equity-centred design (ECD) sessions on December 7, 2022 and December 8, 2022, at the Radboud University Medical Centre in the Netherlands. This participatory multi-method approach includes patients in the research and design process and was used to explore the impact of gender norms and stereotypes in illness experiences and generate patient-driven recommendations for gender-aware Parkinson's care. Quantitative survey data and design-based data were descriptively analysed, and qualitative focus group discussions were thematically analysed. Findings: This study included thirteen men and fifteen women with PD in the Netherlands. All participants were of Dutch descent, with a median age of 65.5 years and a median clinical disease duration of 4.2 years. The gendered stereotype that "people with PD are old men" affected both men's and women's perception of living with the disease and the perceptions of their social environment. Men described masculine stereotypes related to physical strength and provider roles, while women expressed those related to feminine physical appearance and caregiver roles, influencing their illness experiences. For some, these norms influenced personal behaviours, while for others, they affected experiences through societal attitudes. Interpretation: Our findings suggested that several gender norms and stereotypes influence the illness experiences of men and women with PD, manifesting at ideological, interpersonal, and internalised levels. Some participants internalised these norms, affecting their coping behaviours, while others encountered them in broader ideological contexts that shaped societal attitudes and interpersonal relationships. To advance gender sensitive PD care, it's essential to explore the impact of gender roles and norms, especially regarding how they might impede coping strategies, care access and utilisation for individuals of diverse gender identities. Funding: The Gatsby Foundation and co-funded by the PPP Allowance by Health∼Holland. Travel reimbursements for participants were made available through a Parkinson's Foundation grant (PF-FBS-2026).

A genderful research world: rapid review, design, and pilot study of an interactive platform for curated sex and gender health research resources.

BACKGROUND: Integration of sex and gender into health research is best practice for designing and conducting equitable, rigorous scientific research. Many evidence-based resources exist to support researchers in this endeavour, but such resources often remain underutilized as they are difficult to find, are not publicly accessible, or are specific to a particular research phase, context, or population. The development and evaluation of a repository of resources was deemed important to create an accessible platform for promoting sex- and gender-integration in health research. METHODS: A rapid review was conducted of critical resources for conducting sex and gender health research. These were integrated into a prototype website design (the Genderful Research World; GRW) that provided an interactive digital landscape for researchers to access these resources. A pilot study evaluated the GRW website for applicability, desirability, and usability with an international sample of 31 health researchers from various disciplines and career stages. Quantitative data from the pilot study was summarized with descriptive statistics. Qualitative data was summarized narratively and used to identify concrete elements for improvement in a second design iteration. RESULTS: Results of the pilot study revealed that the GRW was considered user friendly and desirable by health researchers and helped them access relevant information. Feedback suggested that providing these resources in a playful way may enhance the experience of the user, particularly given the high 'desirability' scores and that users emphasized the interactive layout as being key to their intention to integrate it into their teaching endeavors. Key feedback from the pilot study (e.g., addition of resources specific to research with transgender populations, revision of website layout) was integrated into the current version of the website: www.genderfulresearchworld.com . CONCLUSIONS: The present research suggests a utility for a repository of resources for integrating sex and gender considerations into research, and that providing a logical, intuitive means of cataloguing and navigating such resources is critical for usability. The results of this study may inform the development of other novel researcher-directed resource curation efforts to address health equity issues and encourage and support health researchers to integrate a sex and gender perspective in their work.

The salience of gender in the illness experiences and care preferences of people with Parkinson's disease.

RATIONALE: In recent years, interest in sex characteristics and gender dimensions of Parkinson's disease (PD) has increased. Yet, much remains to be understood about how gender-related aspects specifically impact the illness and experiences of care in persons living with PD. OBJECTIVE: The purpose of this study was to explore the salience of gender-related aspects in the illness experiences and care provision preferences of people with PD. METHODS: A descriptive qualitative study including semi-structured life story interviews was conducted with men and women living with PD in the Netherlands. Between September 2020 and February 2021, forty people with PD (20 men and 20 women) participated in digital interviews of which thirty-one (18 men and 13 women) were included in the thematic analyses for this specific study. RESULTS: Overall, most participants did not consider gender-related aspects salient towards their illness experiences. However, when prompted, a number of participants described several stereotypical views about gender as related to the visibility of PD, emotional experiences, help seeking, role patterns and physical appearance. While most men and women with PD did not express specific gender-related preferences for their healthcare providers, those that did, all preferred women as healthcare providers. These preferences were generally related to attributed feminine traits which are considered relevant in routine, particularly sensitive, physical examinations of people with PD. CONCLUSION: This study demonstrates that although every person has a gender identity, the salience attributed to gender varies with illness experiences and in care provision preferences between people with PD. These findings highlight the need for precise and personalized methodologies to capture more nuanced insights into the impact of gender dimensions on PD. Furthermore, drivers behind gender-related preferences in care provision are multifactorial and warrant further investigation among people with PD.

The impact of multiple gender dimensions on health-related quality of life in persons with Parkinson's disease: an exploratory study.

BACKGROUND: There is a growing recognition that sex characteristics and gender-related aspects can have a substantial impact on the health-related quality of life (HRQoL) of persons with Parkinson's disease (PD). Gender is a multidimensional construct, including dynamic social norms and relations that influence health and impact quality of life. Even when gender is investigated in the field of PD, it is frequently conceptualized as gender identity while other dimensions, such as roles or relations, are generally ignored. The aim of this study was to explore the impact of several gender dimensions on HRQoL among people with PD. METHODS: We performed a survey-based, cross-sectional study in the Netherlands to explore the impact of several gender dimensions, namely; gender identity, gender roles and gender relations on HRQoL (PDQ-39) of people with PD. RESULTS: In our study population (N = 307), including 127 (41%) women, we did not observe an association between gender identity and overall HRQoL. In contrast, an androgynous gender role and higher engagement in household tasks were associated with better overall HRQoL among people with PD. CONCLUSIONS: This study offers the first detailed description of the impact of different gender dimensions on the HRQoL of people with PD and highlights the need for more precise gender-measures to inform actionable gender-sensitive health interventions for people with PD.

The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer.

BACKGROUND: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. PATIENTS AND METHODS: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. RESULTS: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. CONCLUSIONS: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being.

The Application of Human-Centered Design Approaches in Health Research and Innovation: A Narrative Review of Current Practices.

BACKGROUND: Human-centered design (HCD) approaches to health care strive to support the development of innovative, effective, and person-centered solutions for health care. Although their use is increasing, there is no integral overview describing the details of HCD methods in health innovations. OBJECTIVE: This review aims to explore the current practices of HCD approaches for the development of health innovations, with the aim of providing an overview of the applied methods for participatory and HCD processes and highlighting their shortcomings for further research. METHODS: A narrative review of health research was conducted based on systematic electronic searches in the PubMed, CINAHL, Embase, Cochrane Library, Web of Science, PsycINFO, and Sociological Abstracts (2000-2020) databases using keywords related to human-centered design, design thinking (DT), and user-centered design (UCD). Abstracts and full-text articles were screened by 2 reviewers independently based on predefined inclusion criteria. Data extraction focused on the methodology used throughout the research process, the choice of methods in different phases of the innovation cycle, and the level of engagement of end users. RESULTS: This review summarizes the application of HCD practices across various areas of health innovation. All approaches prioritized the user's needs and the participatory and iterative nature of the design process. The design processes comprised several design cycles during which multiple qualitative and quantitative methods were used in combination with specific design methods. HCD- and DT-based research primarily targeted understanding the research context and defining the problem, whereas UCD-based work focused mainly on the direct generation of solutions. Although UCD approaches involved end users primarily as testers and informants, HCD and DT approaches involved end users most often as design partners. CONCLUSIONS: We have provided an overview of the currently applied methodologies and HCD guidelines to assist health care professionals and design researchers in their methodological choices. HCD-based techniques are challenging to evaluate using traditional biomedical research methods. Previously proposed reporting guidelines are a step forward but would require a level of detail that is incompatible with the current publishing landscape. Hence, further development is needed in this area. Special focus should be placed on the congruence between the chosen methods, design strategy, and achievable outcomes. Furthermore, power dimensions, agency, and intersectionality need to be considered in co-design sessions with multiple stakeholders, especially when including vulnerable groups.

The Impact of Sex and Gender on the Multidisciplinary Management of Care for Persons With Parkinson's Disease.

The impact of sex and gender on disease incidence, progression, and provision of care has gained increasing attention in many areas of medicine. Biological factors-sex-and sociocultural and behavioral factors-gender-greatly impact on health and disease. While sex can modulate disease progression and response to therapy, gender can influence patient-provider communication, non-pharmacological disease management, and need for assistance. Sex and gender issues are especially relevant in chronic progressive diseases, such as Parkinson's disease (PD), because affected patients require multidisciplinary care for prolonged periods of time. In this perspective paper, we draw from evidence in the field of PD and various other areas of medicine to address how sex and gender could impact PD care provision. We highlight examples for which differences have been reported and formulate research topics and considerations on how to optimize the multidisciplinary care of persons with PD.

An opportunity for patient-centered care: Results from a secondary analysis of sex- and gender-based data in mobile health trials for chronic medical conditions.

Traditional medical practice has suffered from male bias, which can lead to sub-optimal treatment options for female patients and increase the incidence of severe side-effects in this population. Mobile health applications, mHealth apps, represent one essential component of the shift towards consumer-centered self-administered individualized health. To prevent sex-specific bias it is important that trials consider sex and gender when developing mHealth apps. We evaluated the inclusion and reporting of sex and gender at all levels in mHealth randomized controlled trials (RCTs). To this end, we conducted a secondary analysis of a large study database addressing the effectiveness of app interventions on clinical outcomes in patients with chronic medical conditions. We followed the 5 steps described in the framework by Arksey and O'Malley and the guidelines of the PRISMA-ScR. Of the 72 app-based RCTs which reported information about sex overall, 62 included individuals of both sexes. The concept of gender was not addressed in any of the studies. The consideration of sex aspects in the design, execution and reporting of mHealth RCTs was minimal or absent. To adequately address the health and preventative needs of the mHealth user population, sex and gender should be systematically included in the research, development and evaluation of mHealth applications.