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 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.
Background The majority of childhood cancer survivors are at risk for treatment-related adverse health outcomes. Survivorship care to mitigate these late effects is endorsed, but not available for many adult survivors of childhood cancer in Europe. The PanCareFollowUp project was initiated to improve their health and quality of life (QoL) by facilitating person-centred survivorship care. MethodsThe PanCareFollowUp Consortium was established in 2018, consisting of 14 project partners from ten European countries, including survivor representatives. The Consortium will develop two PanCareFollowUp Interventions, including a person-centred guideline-based model of care (Care Intervention) and eHealth lifestyle coaching (Lifestyle Intervention). Their development will be informed by several qualitative studies and systematic reviews on barriers and facilitators for implementation and needs and preferences of health care providers (HCPs) and survivors. Implementation of the PanCareFollowUp Care Intervention as usual care will be evaluated prospectively among 800 survivors from Belgium, Czech Republic, Italy and Sweden for survivor empowerment, detection of adverse health conditions, satisfaction among survivors and HCPs, costeffectiveness and feasibility. The feasibility of the PanCareFollowUp Lifestyle Intervention will be evaluated in the Netherlands among 60 survivors. Results Replication Manuals, allowing for replication of the PanCareFollowUp Care and Lifestyle Intervention, will be published and made freely available after the project. Moreover, results of the corresponding studies are expected within the next five years.
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 Unionefunded 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 Pan-CareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the Pan-CareFollowUp 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.
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.
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