Empowering patients in self-management of parkinson's disease through cooperative ICT systems

The objective of this chapter is to demonstrate the technical feasibility and medical effectiveness of personalised services and care programmes for Parkinson's disease, based on the combination of mHealth applications, cooperative ICTs, cloud technologies and wearable integrated devices, which empower patients to manage their health and disease in cooperation with their formal and informal caregivers, and with professional medical staff across different care settings, such as hospital and home. The presented service revolves around the use of two wearable inertial sensors, i.e. SensFoot and SensHand, for measuring foot and hand performance in the MDS-UPDRS III motor exercises. The devices were tested in medical settings with eight patients, eight hyposmic subjects and eight healthy controls, and the results demonstrated that this approach allows quantitative metrics for objective evaluation to be measured, in order to identify pre-motor/pre-clinical diagnosis and to provide a complete service of tele-health with remote control provided by cloud technologies. © 2016, IGI Global. All rights reserved

Peer coaching through mHealth targeting physical activity in people with Parkinson disease: feasibility study

BACKGROUND: Long-term engagement in exercise and physical activity mitigates the progression of disability and increases quality of life in people with Parkinson disease (PD). Despite this, the vast majority of individuals with PD are sedentary. There is a critical need for a feasible, safe, acceptable, and effective method to assist those with PD to engage in active lifestyles. Peer coaching through mobile health (mHealth) may be a viable approach. OBJECTIVE: The purpose of this study was to develop a PD-specific peer coach training program and a remote peer-mentored walking program using mHealth technology with the goal of increasing physical activity in persons with PD. We set out to examine the feasibility, safety, and acceptability of the programs along with preliminary evidence of individual-level changes in walking activity, self-efficacy, and disability in the peer mentees. METHODS: A peer coach training program and a remote peer-mentored walking program using mHealth was developed and tested in 10 individuals with PD. We matched physically active persons with PD (peer coaches) with sedentary persons with PD (peer mentees), resulting in 5 dyads. Using both Web-based and in-person delivery methods, we trained the peer coaches in basic knowledge of PD, exercise, active listening, and motivational interviewing. Peer coaches and mentees wore FitBit Zip activity trackers and participated in daily walking over 8 weeks. Peer dyads interacted daily via the FitBit friends mobile app and weekly via telephone calls. Feasibility was determined by examining recruitment, participation, and retention rates. Safety was assessed by monitoring adverse events during the study period. Acceptability was assessed via satisfaction surveys. Individual-level changes in physical activity were examined relative to clinically important differences. RESULTS: Four out of the 5 peer pairs used the FitBit activity tracker and friends function without difficulty. A total of 4 of the 5 pairs completed the 8 weekly phone conversations. There were no adverse events over the course of the study. All peer coaches were "satisfied" or "very satisfied" with the training program, and all participants were "satisfied" or "very satisfied" with the peer-mentored walking program. All participants would recommend this program to others with PD. Increases in average steps per day exceeding the clinically important difference occurred in 4 out of the 5 mentees. CONCLUSIONS: Remote peer coaching using mHealth is feasible, safe, and acceptable for persons with PD. Peer coaching using mHealth technology may be a viable method to increase physical activity in individuals with PD. Larger controlled trials are necessary to examine the effectiveness of this approach.This study is supported by Boston Roybal Center for Active Lifestyle Interventions (RALI Boston), Grant #P30 AG048785, and the American Parkinson Disease Association, Massachusetts chapter. The authors would like to thank Nicole Sullivan, SOT, for her assistance with data management and data collection and Nick Wendel, DPT, for his assistance with data collection. Additionally, the authors would like to thank the participants in this study for their time, effort, and insights. (P30 AG048785 - Boston Roybal Center for Active Lifestyle Interventions (RALI Boston); American Parkinson Disease Association, Massachusetts chapter)Accepted manuscrip

Making the case for innovation to support informal caregivers : an exploratory study on the most relevant characteristics of a mobile technology solution from the particular case of The Weal Life

The goal of this dissertation is to investigate how a mobile technology solution can support the needs of informal caregivers. The objective of this research was dual: first to understand how a mobile technology solution can be used to answer the major issues of informal caregiving related to modern living and second to determine the features of a caregiver mobile solution that can support the informal caregiver with their care responsibilities. With these objectives in mind, a case study was explored, on the San Francisco based start-up The Weal Life. The Weal Life is a pioneer mobile technology solution in the informal caregiving industry which aligns its mission with the objectives of this dissertation. The Literature Review explored the main challenges of the caregiving industry, alongside informal caregivers’ concerns and needs. Through the case analysis on The Weal Life and the examination of two “holistic” cases, critical mobile features were presented in order to advance better technology solutions for informal caregivers.O objetivo desta dissertação é investigar como uma solução de tecnologia móvel pode suportar as necessidades dos cuidadores informais. O objetivo desta pesquisa foi duplo: primeiro entender como uma solução de tecnologia móvel pode ser usada para responder às principais questões de cuidados informais relacionados à vida moderna e em segundo lugar para determinar as características de uma solução móvel de cuidador que pode apoiar o cuidador informal com os seus cuidados. Com esses objetivos em mente, um estudo de caso foi explorado, sobre a start-up The Weal Life baseada em San Francisco. A Weal Life é uma solução pioneira de tecnologia móvel na indústria de cuidar informal, que alinha sua missão com os objetivos desta dissertação. A Revisão de Literatura explorou os principais desafios da indústria de cuidados, ao lado das preocupações e necessidades dos cuidadores informais. Através da análise de caso em The Weal Life e do exame de dois casos "holísticos", características móveis críticas foram apresentadas a fim de avançar melhores soluções de tecnologia para cuidadores informais

PDapp - A mobile solution for continuous follow-up of Parkinson's disease patients

A doença de Parkinson é uma doença degenerativa que afeta principalmente neurónios produtores de dopamina, numa área específica do cérebro chamada substantia nigra. Os sintomas desenvolvem-se lentamente ao longo dos anos e a doença progride de uma forma muito variável de pessoa para pessoa. Estimulação Cerebral Profunda (DBS) é uma prática comum como tratamento nas fases mais tardias da doença. O sistema iHandU é um aparelho inovador que se pode equipar para medir a rigidez do pulso durante esta cirurgia. PDapp é uma aplicação móvel que procura trazer as funcionalidades da iHandU para fora da sala de cirurgia, de forma a ajudar os pacientes com um seguimento contínuo da sua doença e a sua progressão ao longo do tempo. Tem como objetivo criar uma ligação entre os pacientes e os seus médicos, fora do ambiente hospitalar. A PDapp fornece aos seus pacientes ferramentas para gerir a sua doença com medicação, testes e a possibilidade de informar os seus médicos de acontecimentos importantes relacionados à doença. Os médicos terão acesso a um dashboard especializado onde poderão analisar as informações dos seus doentes, o seu historial e acontecimentos recentes. O sistema será composto de uma aplicação móvel, uma plataforma web para o dashboard e uma base de dados na cloud. No final, teremos um sistema capaz de integrar a aplicação móvel dos pacientes, o dashboard dos médicos e a iHandU para fazer testes. A aplicação móvel terá de ser interativa e facilmente usável por pacientes com Parkinson's. O dashboard dos médicos será focado em apresentar a informação mais essencial de uma forma direta e costumizável, para que os médicos possam tomar melhores decisões. Um sistema como a PDapp pode ter grande impacto nas vidas de pacientes com Parkinson's, ajudando a gerir a doença e a liga-los aos seus médicos nos momentos importantes.Parkinson's disease is a neurodegenerative disorder that affects dopamine-producing ("dopaminergic") neurons predominately in a specific area of the brain called substantia nigra. Symptoms develop slowly over the years, and the disease's progression is often different from person to person. Deep Brain Stimulation is a common practice in the later stages of the disease as treatment. The iHandU system is a novel, comfortable, and wireless device, designed to classify the wrist rigidity during this practice. PDapp is a mobile app solution to bring the iHandU's capabilities out of the surgery room and help patients with a continuous follow up of their disease's progression through time. It strives to connect the patients and their doctors outside of the clinical environment. It provides patients with a high-quality mobile application for managing their disease with medication and tests, as well as keep their doctors informed of important events related to the disease. On the other hand, the doctors have access to a specialised dashboard to get an overview of all their patients' history and their most recent events. The system required will be composed of a mobile application, a web platform to host the dashboard, and a cloud-based database to persist all the data necessary. By the end of this project, we should have a system capable of successfully integrating a mobile application for the patients, a dashboard for the doctor, and the iHandU for performing tests. The mobile app should be highly usable and interactive for users with Parkinson's disease, and the dashboard should be focused and clean to provide the doctors with the best overview of their patients and current situations. A system like PDapp can have a significant impact on the lives of these patients by easing their access to relevant tools and connecting them to their doctors whenever needed

PD_manager: an mHealth platform for Parkinson's disease Management

Parkinson’s disease (PD) current clinical management is mostly based on patient’s subjective report about the effects of treatments and on medical examinations that unfortunately represent only a snapshot of a highly fluctuating clinical condition. This traditional approach requires time, it is biased by patient’s judgment and is often not completely reliable, especially in moderate advanced stages. The main purpose of the EU funded project PD_manager (Horizon 2020, Grant Agreement n° 643706) is to build and evaluate an innovative, mHealth, patient-centric system for PD remote monitoring. After a first phase of research and development, a set of wearable devices has been selected and tested on 20 patients. The raw data recorded have been used to feed algorithms necessary to recognize motor symptoms. In parallel, other applications have been developed to test also the main non-motor symptoms. On a second phase, a case- control randomized multicentric study has been designed and performed to assess the acceptability and utility of the PD_manager system at patients’ home, compared to the current gold standard for home monitoring, represented by symptoms diaries. 136 couples of patients and caregivers have been recruited, and at the end of the trial the system was found to be very well tolerated and easy to use, compared to diaries. The developed System is able to recognize motor and non-motor symptoms, helping healthcare professionals in taking decisions on therapeutic strategies. Moreover, PD_manager could represent a useful tool for patient's self-monitoring and self-care promotion

Adapting Mobile and Wearable Technology to Provide Support and Monitoring in Rehabilitation for Dementia:Feasibility Case Series

Background: Mobile and wearable devices are increasingly being used to support our everyday lives and track our behavior. Since daily support and behavior tracking are two core components of cognitive rehabilitation, such personal devices could be employed in rehabilitation approaches aimed at improving independence and engagement among people with dementia. Objective: The aim of this work was to investigate the feasibility of using smartphones and smartwatches to augment rehabilitation by providing adaptable, personalized support and objective, continuous measures of mobility and activity behavior. Methods: A feasibility study comprising 6 in-depth case studies was carried out among people with early-stage dementia and their caregivers. Participants used a smartphone and smartwatch for 8 weeks for personalized support and followed goals for quality of life. Data were collected from device sensors and logs, mobile self-reports, assessments, weekly phone calls, and interviews. This data were analyzed to evaluate the utility of sensor data generated by devices used by people with dementia in an everyday life context; this was done to compare objective measures with subjective reports of mobility and activity and to examine technology acceptance focusing on usefulness and health efficacy. Results: Adequate sensor data was generated to reveal behavioral patterns, even for minimal device use. Objective mobility and activity measures reflecting fluctuations in participants’ self-reported behavior, especially when combined, may be advantageous in revealing gradual trends and could provide detailed insights regarding goal attainment ratings. Personalized support benefited all participants to varying degrees by addressing functional, memory, safety, and psychosocial needs. A total of 4 of 6 (67%) participants felt motivated to be active by tracking their step count. One participant described a highly positive impact on mobility, anxiety, mood, and caregiver burden, mainly as a result of navigation support and location-tracking tools. Conclusions: Smartphones and wearables could provide beneficial and pervasive support and monitoring for rehabilitation among people with dementia. These results substantiate the need for further investigation on a larger scale, especially considering the inevitable presence of mobile and wearable technology in our everyday lives for years to come

An intelligent information forwarder for healthcare big data systems with distributed wearable sensors

© 2016 IEEE. An increasing number of the elderly population wish to live an independent lifestyle, rather than rely on intrusive care programmes. A big data solution is presented using wearable sensors capable of carrying out continuous monitoring of the elderly, alerting the relevant caregivers when necessary and forwarding pertinent information to a big data system for analysis. A challenge for such a solution is the development of context-awareness through the multidimensional, dynamic and nonlinear sensor readings that have a weak correlation with observable human behaviours and health conditions. To address this challenge, a wearable sensor system with an intelligent data forwarder is discussed in this paper. The forwarder adopts a Hidden Markov Model for human behaviour recognition. Locality sensitive hashing is proposed as an efficient mechanism to learn sensor patterns. A prototype solution is implemented to monitor health conditions of dispersed users. It is shown that the intelligent forwarders can provide the remote sensors with context-awareness. They transmit only important information to the big data server for analytics when certain behaviours happen and avoid overwhelming communication and data storage. The system functions unobtrusively, whilst giving the users peace of mind in the knowledge that their safety is being monitored and analysed

A road map for remote digital health technology for motor neuron disease

Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients’ ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (1) a set of reliable digital parameters to capture data collected under free-living conditions that reflect patient-centric measures and facilitate clinical decision making and (2) an integrated, open-source system that provides personalized feedback to patients, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments