digitised home based care for parkinson's disease

Conditions: Parkinson Disease; Parkinson

Summary: parkinson's disease is the world's fastest-growing neurological condition. it is a progressive neurodegenerative disorder that causes a wide range of movement-related (motor) problems (slowness, stiffness, tremor, balance difficulties) and non-motor problems (disturbances of thinking, memory, perception, mood, bladder, bowels, blood pressure). even before the pandemic, nhs services were struggling to meet the demand for care. to address this need for support, the investigators have co-designed an innovative digital care pathway, home based care (hbc), with people with parkinson's (pwp) and care partners (cp) to deliver self-management support and clinical expertise to the patient's home. this pathway is supported by remote monitoring with a wrist-worn sensor and questionnaires. in this study, the investigators will be digitising this pathway so that data from a variety of sources (including the sensor, questionnaires, and patients' health records) can be combined in one place to enable more personalised care and to provide advice to support self-management of symptoms by patients. after the investigators have set up the digitised pathway, its implementation will be evaluated with a group of 120 people with parkinson's and their care partners and associated healthcare providers through the plymouth parkinson's service. the investigators will examine participants' adoption of and engagement with the patient-facing digital platform over the course of 3 months and gather their feedback about its usability and acceptability. a smaller group of the participants will discuss their experiences in more detail to help pinpoint aspects that work well and those needing adjustment and development. the investigators anticipate that this system will result in improved quality of life and care and increased knowledge and confidence for self-managing symptoms. the results of the study will be used to improve the digitised home based care pathway. people with parkinson's and care partners involved in the project will help guide the sharing of these results with healthcare providers and the general public.


Eligibility criteria:
inclusion criteria: * age 18 years or over * not resident in care home or nursing home * ambulant * have compatible smartphone/data access (access to a digital device is a necessary prerequisite of system use, and the formative usability study had success in recruiting participants with varying levels of experience with smartphones \[18\]) * be fluent in english * normally under the care of the parkinson's service in the participating organisation * participant's healthcare provider in the participating organisation consented to participate in the study * able and willing to provide informed consent * able and willing to comply with intervention requirements exclusion criteria: * secondary cause of parkinsonism * significant cognitive impairment or a diagnosis of parkinson's disease dementia * significant comorbidity, which in the opinion of the chief investigator would preclude safe participation in the study or protocol compliance * previous involvement in development or testing of the nms assist system * a life expectancy of \<6 months * living in residential care facilities * incapable of self-consent * in a dependent/unequal relationship with the research or care teams or any ppi representatives

Keywords: parkinson disease self-management telemedicine artificial intelligence