Background Dementias—including Alzheimer disease—and Parkinson disease profoundly impact the quality of life of older population members and their families. PROCare4Life (Personalized Integrated Care Promoting Quality of Life for Older Adults) is a European project that recognizes the benefit of technology-based integrated care models in improving the care coordination and the quality of life of these target groups. This project proposes an integrated, scalable, and interactive care platform targeting older people suffering from neurodegenerative diseases, their caregivers, and socio-health professionals. PROCare4Life adopts a user-centered design approach from the early stage and throughout platform development and implementation, during which the platform is designed and adapted to the needs and requirements of all the involved users. Objective This paper presents the study protocol for investigating users’ needs and requirements regarding the design of the proposed PROCare4Life platform. Methods A mixed qualitative and quantitative study design is utilized, including online surveys, interviews, and workshops. The study aimed to recruit approximately 200 participants, including patients diagnosed with dementia or Parkinson disease, caregivers, socio-health professionals, and other stakeholders, from five different European countries: Germany, Italy, Portugal, Romania, and Spain. Results The study took place between April and September 2020. Recruitment is now closed, and all the data have been collected and analyzed in order to be used in shaping the large-scale pilot phase of the PROCare4Life project. Results of the study are expected to be published in spring 2021. Conclusions This paper charts the protocol for a user-centered design approach at the early stage of the PROCare4Life project in order to shape and influence an integrated health platform suitable for its intended target group and purpose. International Registered Report Identifier (IRRID) DERR1-10.2196/22463

Background The presence of attention deficit hyperactive disorder (ADHD) causes great impairment in social and professional activities as well as in the quality of life (QOL) and increases level of parental stress. Objective This study aimed to compare the QOL, self-competence, and self-liking among the caregivers of ADHD and non-ADHD children. Method A descriptive cross-sectional study was conducted on 216 caregivers. They were divided into two groups: caregivers of children with ADHD and caregivers of children without ADHD. Setting This study was conducted in the Elsinbellawin City at Dakahlia Governorate in Egypt. Tools used were socio-demographic data sheet and WHO Quality of Life Scale-Brief (WHOQOL-Brief) and self-liking/self-competence scale. Results Our results showed that all QOL dimensions of the caregivers of ADHD children were markedly deteriorated, if compared to those of non-ADHD children, and two thirds of caregivers of ADHD children suffered from poor level quality of life (QOL). Caregivers of non-ADHD children had fair level of self-competence but a good level of self-liking. Caregiver of ADHD children who had no work or history of medical diseases has a fair level of QOL and self-competence but a good level of self-liking. Conclusions We found that caregivers of ADHD children have fair levels of QOL, self-liking, and self-competence, if compared to those of non-ADHD children. There are statistically significant correlations between QOL, self-competence, and self-liking among both caregivers of both non-ADHD children and ADHD children.

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Background With what has been known as the “triple-win effect”, introducing information and communication technologies (ICTs) in the health care of neurodegenerative diseases is beneficial in delaying the need for institutional care, reducing the associated health care costs, reducing the caregiving burden, and improving individuals’ quality of life. Nevertheless, the mismatch between the users’ expectations and their actual needs remains one of the main challenges that can reduce the usability of technology solutions. Therefore, the European project Personalized Integrated Care Promoting Quality of Life for Older People (PROCare4Life), which aimed to develop an ICT-based platform for all parties involved in the health care of neurodegenerative diseases, adopted a user-centered design approach, where all users are involved from the inception and throughout the platform development and implementation to integrate their needs and requirements in the proposed platform. Objective This paper presents the results of a study on the needs and requirements of the potential end users (older people with neurodegenerative diseases, caregivers, and health care professionals) and other key stakeholders in the development of the PROCare4Life platform. Methods A mixed qualitative and quantitative study design was used, including 2 web-based surveys, 40 interviews, and 4 workshops. The study was conducted between April and September 2020 in 5 European countries: Germany, Italy, Portugal, Romania, and Spain. Both data types were analyzed separately and then merged and interpreted, with greater priority placed on qualitative research. Results A total of 217 participants were recruited; 157 (72.4%) of them completed the web-based surveys (n=85, 54.1% patients and n=72, 45.9% caregivers), and 60 (27.6%) individuals participated in the qualitative research (20/60, 33% health care professionals; 5/60, 8% patients; 5/60, 8% caregivers; and 30/60, 50% key stakeholders). We identified 3 main themes (T): (T1) experiences associated with illness, (T2) thoughts about the platform technology, and (T3) desired properties. Alerts for adverse events, communication tools, reminders, and monitoring are constantly needed functionalities, whereas ease of use, personalization, and user-friendliness are foreseen as necessary features. Conclusions This paper identified the key personal, social, and health factors that influence the daily lives of the potential end users and reflected on their needs and expectations regarding the design of the proposed PROCare4Life platform. The collected data were useful for the development of the PROCare4Life platform. Although the combination and collection of features for diverse user groups are typical for integrated care platforms, it results in exponential complexity for designers, developers, and users. Contradicting opinions and several concerns in this study demonstrate that an ICT-integrated care platform should not promise too much for too many. Instead, selection, focus, and, sometimes, restriction to essentials are necessary. Users and other stakeholders should be involved in these decisions. International Registered Report Identifier (IRRID) RR2-10.2196/22463

BACKGROUND Dementias including Alzheimer's disease and Parkinson's disease profoundly impact the quality of life of older populations and their families. PROCare4Life is a European project that recognizes the benefit of technology-based integrated care models in improving the care coordination and the quality of life of these target groups. It proposes an integrated, scalable and interactive care platform targeting older people suffering from neurodegenerative diseases, their caregivers, and health professionals. PROCare4Life adopts a User-Centered Design approach from the early stage and throughout the platform development and implementation, where the platform is designed and adapted to the needs and requirements of all the involved end-users. OBJECTIVE This paper presents the study protocol that will be used to investigate the end-user’s needs and requirements regarding the design of the proposed PROCare4Life solution. METHODS A mixed qualitative and quantitative study design is utilized, including interviews, workshops, and online surveys, involving approximately 200 participants: patients suffering from Parkinson’s disease and dementia, caregivers, socio-health professionals and stakeholders from different five European countries (Portugal, Germany, Italy, Spain and Romania). RESULTS The results of the study which took place in the period May-August 2020, will be used to shape the large-scale piloting phase of the PROCare4Life project. CONCLUSIONS This paper charts the protocol for a user-centered design approach at the early stage of the project to shape and influence an integrated health solution suitable for its intended target group and purpose.