Life Goes On: wellbeing and neuropsychiatric symptoms in institutionalized brain injury patients

Introduction

Every year, tens of thousands of people in the Netherlands sustain severe brain injury, for example due to a traffic accident, hypoxic damage during cardiac arrest, or stroke. Most of them survive the acute phase, but over time a significant number of patients will require 24-hour care, for example in a nursing home or institution for people with intellectual disability. Not being able to live independently anymore is a worst-case scenario for many healthy people. But for patients with acquired brain injury (ABI) and their loved-ones, life goes on, even when it’s no longer within the familiarity and comfort of one’s own home.

Neuropsychiatric symptoms

People with ABI may mourn what they have lost through their injuries, or feel stuck with their impairments, but they also continue to enjoy things, to have hopes and dreams. ABI patients tend to be much younger than the average nursing home population and may have decades ahead of them. Decades they, like any other person, want to fill with a meaningful, pleasurable life. In this universal aspiration, a major challenge is brought forth by the high prevalence of neuropsychiatric symptoms (NPS) after ABI. NPS, such as apathy, disinhibition, irritability, depression, anxiety and aggression, may be more likely to manifest after hospital discharge than during the initial admission. Symptoms may be persistent and even worsen over time. Caregiver burden increases significantly with cognitive dysfunction, behavioral symptoms, and impaired functional status of patients. NPS have a negative impact on the quality of life of people with ABI. But until now, little is known about which symptoms affect quality of life in what way. A complicating factor is that quality of life instruments often rely on self-reporting and communication skills which not all people with ABI are having any more. This means that gaining insight into the interaction between neuropsychiatric symptoms and quality of life of people with ABI is not easy to investigate.

Focus

The focus of this proposal, entitled ‘Life Goes On’, therefore lies on wellbeing in patients with ABI, and how this relates to their neuropsychiatric symptoms. In addition to established, quantitative scales, Life Goes On will invite ABI patients living in various kinds of health care institutions and their proxies to talk about their views on quality of life in a more inclusive way. The knowledge gained in Life Goes On will allow patients’ voices to lead future care program development, so that ABI patients and their loved-ones can enjoy more evidence-based, personalized care in the near future. ABI is defined here as being an injury to the brain that is not hereditary, congenital, degenerative or induced by birth trauma (Brain Injury Association of America).

Mixed-methods study

The approach is a mixed-methods study combining quantitative analysis of an existing database on NPS and QOL with semi-structured interviews about established quality of life domains. Patients <65 years of age with ABI residing in nursing homes and other long term care facilities within the Netherlands, and their representatives, regardless of sex, gender, ethnicity and socio-economic background will be included.

Expected results

Life Goes On results in knowledge about QOL according to quantitative and qualitative measures, thus providing insight into the relation between quality of life and NPS. The resulting multi-domain insight into quality of life in ABI patients in long-term care facilities can be used to improve wellbeing for patients in the near future in both care and policy, and at the same time bringing forward important insights in the way NPS interacts with QOL of people with ABI