ONParkinson – Innovative mHealth to support the triad: patient, carer and health professional

Trabalho apresentado no 6th EAI International Symposium on Pervasive Computing Paradigms for Mental Health, 28-30 novembro 2016, Barcelona, EspanhaThe ONParkinson mHealth platform aims to empower an integrated assistance to support end-users of the triad “people with Parkinson’s Disease, their carers and health professionals”, promoting the self-management in Parkinson’s disease. Therefore, ONParkinson is expected to optimize the communication between the triad users, helping them find relevant knowledge to support their clinical issues, as well as allowing the monitoring of patients` daily routine and the recommendation for daily exercises. This mHealth solution was created and materialized after an initial study of the end-users’ needs. This paper presents the usability study of the first version of the ONParkinson prototype. According to the usability tests’ findings, ONParkinson was perceived by the triad users as easy to use, with functionalities well integrated, useful and attractive. Some recommendations were suggested to enhance its usability, users’ satisfaction and continuance intentions

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

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Models for community based day care for older people: A narrative review

Objectives: Older Australians are choosing to live within the community and there are a number of initiatives to enable this sector of the population to do so for longer. In an effort to ensure that they remain both physically and psychologically engaged, one initiative has been to provide community based day care (CBDC). Method: A narrative review was undertaken through searching MEDLINE, CINAHL Plus, Scopus and AgeInfo using keywords related to facility related, target group related and purpose/program of CBDC services. Results: Results indicated that there is a much research investigating different approaches but little consensus regarding the optimal delivery model thereby rendering it difficult to make a direct correlation as to the most effective CBDC. Discussion: The review presents an overview of the array of models providing centre based day care for older people. The challenge for future service delivery is to determine which of CBDC services are most successful in catering for the needs of older community dwelling adult or are new innovative models of CBDC require

Quality of life and palliative care need in multiple system atrophy and progressive supranuclear palsy : a pilot study using quantitative and qualitative methods

MD ThesisBackground Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP) are atypical Parkinsonian disorders which are rapidly progressive. The impact that Parkinsonian disorders has on quality of life (QoL) is increasingly understood, though less work has been done in MSA and PSP compared to Parkinson’s disease. The role of Palliative Care in enhancing QoL is beginning to be translated into clinical practice though fewer studies have been done in MSA and PSP compared with Parkinson’s disease. Methods A cross-sectional study of 23 MSA patients and 24 PSP patients was carried out, assessing aspects of QoL, depression, palliative symptoms and clinical milestones such as dysarthria. Carers for each disease type were assessed in terms of carer strain and QoL. A range of QoL measures including subjective, disease-specific and general QoL scores were taken with the aim of achieving a holistic impression of QoL and symptom burden. A subset of participants were selected for interviews to obtain personal perspectives of living with these conditions. The interviews were evaluated using thematic analysis, to gain a still fuller, richer picture of the implications of these diseases on QoL for patients and carers. The use of both quantitative and qualitative methods was intended to complement each other, with the recognition that QoL is a complex and subjective concept and cannot be encompassed using a single type of assessment. Results Using multiple linear regression, QoL was predicted for by depression and palliative need in MSA and PSP, with severity having an influence in PSP only. Carer mental well-being and patient depression influenced different aspects of carer QoL. Issues with legs was the highest-rated symptom in both groups and there was no significant difference in palliative need between MSA and PSP. Subjective QoL using the SEIQoL-DW score produced diverse domains which people felt influenced their QoL. The most commonly nominated were ‘family’ and ‘partner’; some domains in common were discussed in interviews. ii The overarching themes in interviews were connection to others, transitions (including adjustment) and seeking support, from peers, palliative care services and sourcing expertise for these rare conditions. Conclusion MSA and PSP have a profound effect on QoL, seen using a range of QoL scores. Depression and symptoms frequently managed in palliative care, predict for patient disease-specific QoL, though severity seems to have a greater impact on QoL in PSP compared with MSA. Carer QoL is impacted by patient depression and by carers’ own mental well-being. This work emphasises that QoL in progressive neurological disorders is heterogeneous and individual. Patients and their carers would likely benefit from an individualised, palliative approach supporting patients through the course of their disease, maximising QoL to enhance the experience of living with a progressive disease

Feasibility and acceptability of a multi-components intervention (PDConnect) to support physical activity in people living with Parkinson's: a mixed methods study.

The benefits of physical activity (PA) for people with Parkinson's are widely acknowledged. To date, research has focussed on the effectiveness of PA interventions, with limited research exploring the optimum means of supporting people living with Parkinson's to change their PA behaviour. A narrative review was undertaken to provide context and underpin the development of a multi-component PA intervention (PDConnect) for people with Parkinson's. PDConnect combines specialist physiotherapy, group-based PA, and self-management with the aim of promoting increased PA and PA self-management. This study was undertaken to determine the feasibility and acceptability of the PDConnect intervention. This study adopted a pragmatist worldview and employed mixed methods. A convergent sequential mixed-methods design was adopted and delivered online via Microsoft Teams. A convenience sample of 31 people with Parkinson's were recruited and randomised into two groups: (i) the usual care group received standard physiotherapy once a week for six-weeks. (ii) the PDConnect group received once a week for six weeks physiotherapy that combined PA, education and behaviour change interventions delivered by a Parkinson's specialist physiotherapist. This was followed by 12 weekly sessions of group-based PA by a fitness instructor specially trained in Parkinson's. Participants were then contacted by the fitness instructor once a month for three months to support PA engagement. Primary feasibility data were collected during the study, with acceptability assessed via semi-structured interviews. Secondary outcomes encompassing motor, non-motor, PA, and health and well-being measures were assessed at baseline, and at six, 18 and 30 weeks. PDConnect was shown to be feasible and safe. The sample was recruited in 12 weeks, and the retention rate was 74%. Outcome measure response and activity diary return rate was high (>95%, 84% respectively). PDConnect attendance was high: 100% for the physiotherapy component and 83% for the group-based exercise component. Participants were very satisfied with PDConnect and perceived that participation increased exercise confidence and knowledge and understanding of Parkinson's. Participation positively impacted Parkinson's symptoms, with perceived improvements in flexibility, muscle strength, PA levels and endurance. Fifty percent of participants receiving PDConnect reported that they were much improved compared to 10% in the usual care group. PDConnect study resources were deemed acceptable. Intervention fidelity was high, with 89% of the physiotherapy and 88% of the group-based exercise delivered as planned. All progression criteria were met, except for participant retention which fell one percent below the a priori criterion. PDConnect is feasible to deliver and rated as highly acceptable among people with Parkinson's. A large-scale trial is required to fully evaluate the effectiveness of PDConnect. Sampling within a future trial needs to include under-represented groups and broader cultural and ethical diversity. In addition, appropriate funding is required to minimise digital exclusion and optimise digital literacy. Minor modifications to the participant manual to support personalisation, and further consideration of type of PA monitor is also recommended. Further consultation with the Parkinson's community is required to guide how to optimise social connection when delivering PA online and to inform the selection of future outcome measures