Case management after acquired brain injury

Rationale: In the Netherlands, approximately 650.000 people live with the consequences of brain injury, affecting their participation and well-being. There are sufficient services available to support people with learning how to live with the consequences of brain injury. However, referral to such services is minimal and patients/caregivers cannot find them on their own. Continuity of care is currently lacking, hindering timely access to the appropriate services.
Objective: The primary objective is to evaluate the feasibility of case management after brain injury. Secondary objectives involve exploring the effectiveness and cost-effectiveness of case management after brain injury compared to usual care.
Study design: This is a pragmatic randomised controlled pilot study with repeated measures in patients with brain injury, taking place between September 2019 and July 2020 in three regions in the Netherlands. A group of brain injury patients and caregivers will receive case management at discharge from the hospital, to explore the effectiveness of case management for brain injury compared to the usual care (the early inclusion group). In addition, a group of brain injury patients/carers presenting with care needs at least 6 months after the injury, who are referred to case management by other professionals, we will investigate pre- and post case management outcomes, since randomisation is considered unethical in this group (the late inclusion group).
Study population: Adults with acquired brain injury who were living in the community prior to the injury and with sufficient command of the Dutch language. Primary adult caregivers of eligible patients with sufficient command of the Dutch language. Health care professionals involved in caring for adult patients with brain injury.
Intervention: The aim of case management after brain injury is to support patients’ and caregivers’ self-management of the consequences of brain injury, to improve/maintain psychosocial well-being, to prevent (escalation of) problems and to facilitate timely access to appropriate services. The early inclusion group will be entered into a digital monitoring system. When needs are identified through the monitoring tool, the case manager gets in touch with the patient/caregiver; the form and intensity of case management depend on their individual needs, varying from providing information via telephone or email to multiple contact moments, support in finding/accessing care services, etc. Since the late inclusion group enters the study because they have a need for help, they will be contacted by the case manager right away (i.e. not entered in the monitoring tool first). Case management has no fixed frequency nor duration.
Main study parameters/endpoints: The primary objective will be evaluated using qualitative methods, assessing fidelity, dose delivered, dose received, reach, recruitment and context. Effectiveness will be explored by assessment of self-management, psychosocial well-being, care needs and service use. Caregiver outcomes include self-efficacy, caregiver burden, psychosocial well-being, caregiver needs.

Case management is feasible and improves self-efficacy,

Assessments will take place every six months during 1,5-2 years (up to december 2021)

Case management. The aim of case management for brain injury is to support patients’ and caregivers’ self-management of the consequences of brain injury and psychosocial well-being, to prevent (escalation of) problems and to facilitate timely access to appropriate services.

Case management involves the following elements:
• Monitoring: tracking patients’ and caregivers’ functioning and well-being; a digital monitoring system is used for this purpose.
• Identification: identification of questions, problems and needs (based on monitoring) that hinder functioning and well-being at the time they emerge.
• Assessment: assessment of the nature and severity of the presented problem, burden on and capabilities of the patient and caregiver, role of social network, making implicit or unmentioned questions and problems explicit, draw conclusions on the core problem in the individual context.
• Information (psycho-education): providing information and education on the (impact of) brain injury to assist understanding, related to the question or problem with a focus on the patients’ capabilities to self-manage the problems, informing patients on available care and support services.
• Provision of support: guide decision-making with regard to managing the problem, providing practical or psychosocial support for relatively mild problems, focused on maintaining or improving self-management.
• Referral: referring to more specialised care or support with relatively complex problems and guide decision making with regard to available services.
• Coordination: supporting access to services, facilitate collaboration between different service providers and bringing about appropriate care when this is not available through the regular services.