Co-design and evaluation of a patient-centred transition programme for stroke patients, combining case management and access to an internet information platform: study protocol for a randomized controlled trial - NAVISTROKE

Abstract

Background Stroke affects many aspects of life in stroke survivors and their family, and returning home after hospital discharge is a key step for the patient and his or her relatives. Patients and caregivers report a significant need for advice and information during this transition period. Our hypothesis is that, through a comprehensive, individualised and flexible support for patients and their caregivers, a patient-centred post-stroke hospital/home transition programme, combining an Internet information platform and telephone follow-up by a case manager, could improve patients’ level of participation and quality of life. Methods An open parallel-group randomized trial will be conducted in two centres in France. We will recruit 170 adult patients who have had a first confirmed stroke, and were directly discharged home from the stroke unit with a modified Rankin score ≤3. Intervention content will be defined using a user-centred approach involving patients, caregivers, health-care professionals and social workers. Patients randomized to the intervention group will receive telephonic support by a trained case manager and access to an interactive Internet information platform during the 12 months following their return home. Patients randomized to the control group will receive usual care. The primary outcome is patient participation, measured by the “participation” dimension score of the Stroke Impact Scale 6 months after discharge. Secondary outcomes will include, for patients, quality of life, activation, care consumption, as well as physical, mental and social outcomes; and for caregivers, quality of life and burden. Patients will be contacted within one week after discharge, at 6 and 12 months for the outcomes collection. A process evaluation alongside the study is planned. Discussion Our patient-centred programme will empower patients and their carers, through individualised and progressive follow-up, to find their way around the range of available healthcare and social services, to better understand them and to use them more effectively. The action of a centralised case manager by telephone and the online platform will make it possible to disseminate this intervention to a large number of patients, over a wide area and even in cases of geographical isolation. Trial registration: ClinicalTrials NCT03956160, Posted: May-2019 and Update: September-2021.

Mobile health solutions: An opportunity for rehabilitation in low- and middle income countries?

“…Improving both clinical management and research can be done through the implementation of a clinical research mentorship program ( 43 ). The development of these new mHealth technologies and solutions, allowing for continuous patient monitoring and follow-up ( 44 , 45 ), is also a unique opportunity to develop more individualized rehabilitation ( 46 – 48 ). According to the WHO, people-centered care is a much broader concept than only actively involving the patient in the care.…”

Co-design for stroke intervention development: Results of a scoping review

“…At the organization level, researchers indicated that co-design could help them generate solutions grounded in the context, increasing organizational innovation capacity [ 32 , 35 ]. Researchers also used co-design methods because these were successfully used to produce practical, accessible, and sustainable interventions and improve services in other healthcare settings (e.g., [ 49 , 50 , 62 , 72 ]).…”

“…Most data sources (n = 73/89, 82%) conducted co-design with multiple participant types (e.g., individuals with stroke, stroke family members/caregivers, stroke clinicians). Of the included data sources, nearly all (n = 87/89, 98%) involved people with stroke, and some specifically targeted individuals with aphasia (e.g., [ 43 , 46 , 57 , 65 , 67 , 92 , 94 ]), with a loss of visual field (e.g., [ 70 ]), current or former hospital inpatients (e.g., [ 32 , 45 , 49 , 50 , 66 , 79 , 86 , 87 ]), with cognitive and/or physical impairments (e.g., [ 85 ]), with certain levels of physical or functional impairments (e.g., “severe upper-limb deficits” [ 91 ] and “mild to moderate level of disability” [ 55 ]), First Nations community members with stroke [ 64 ] and Aboriginal and/or Torres Strait Islander Peoples with stroke [ 43 ]. A few researchers specified that cognitive ability was determined through clinical judgement and/or based on whether an individual could provide informed consent and participate in the study activities [ 74 , 104 ].…”

“…Prior to data collection, many researchers developed recruitment and data collection activities, questions and prompts with individuals with stroke (e.g., an advisory committee) or pilot tested these with individuals who had a stroke to ensure these were appropriate (e.g., could enable discussion and agreement and allow individuals with stroke decision-making power [ 65 ]) and accessible (e.g., delivery format to accommodate differing communication needs (e.g. [ 43 , 54 , 65 , 73 ]) for people with stroke (e.g., an advisory board and/or each participant), as well as feasible (e.g., time to completion fell within the allotted time) (e.g., [ 32 , 116 ]). In addition, some researchers hired experts, including an animator, speech-language pathologist, graphic designer, and professional voice recording artist, to create generative materials to develop data collection tools to help meaningfully involve participants and elicit rich dialogue (e.g., [ 43 , 46 , 65 ]).…”

Rehabilitation: a key service, yet highly underused, in the management of young patients with sickle cell disease after stroke in DR of Congo

“…Additionally, the development of new affordable and portable technology and solutions can enable continuous patient monitoring and follow-up ( 51 , 52 ), leading to more individualized rehabilitation ( 53 ) and could allow the validation of new interventions or technologies ( 54 ). People-centered care is essential for this, as it involves actively involving the patient in the care, providing them with the knowledge and support they need to make decisions and engage in their own care, and ensuring that caregivers are performing optimally within a supportive working environment ( 55 ).…”