Epidemiology and Health Services Research

(Dr. Miriam Galvin, Ms. Sile Carney, Mr. Tommy Gavin, Dr. Sinead Maguire, Dr. Katy Tobin and Dr. Padhraig Ryan)

Health services research (HSR) is a broad multidisciplinary field, at the interface of clinical medicine and human sciences. The research domains for HSR are individuals, families, organisations, institutions, communities and populations. It looks at how people get access to health care professionals (HCPs) and services, financial cost, what happens to patients and caregivers/families as a result of this care; and the effects of individual behaviour, social factors, financing systems, organizational structures and processes on health and well-being.

There are currently no effective disease modifying therapies for ALS/MND, clinical intervention is focused on enhancing the quality of life for patients and relatives by relieving symptoms, providing emotional, psychological and spiritual support as needed, and supporting the family in bereavement. As is the case for all neurodegenerative diseases, the generation of management protocols for ALS are more complex than for monophasic illnesses. This complexity relates to the multi-dimensionality and interdependence of required service provision. By extension, outcomes measurements must also be recognized as being multidimensional and interdependent.

The use of multiple research methods is best suited to understand complex problems in health/healthcare experiences, provision, delivery and utilization. In the Academic Unit of Neurology, the patient-oriented and Health Services Research theme incorporates multidisciplinary and interdisciplinary enquiry, and qualitative/mixed methods approaches complement traditional biomedical research. 

Ongoing research and future objectives

Through a number of interlinked research projects (funders: HRB, JPND, ALSA) we are developing a best practice framework/ care pathway for the management of ALS/MND as well as other neurodegenerative disorders. In particular, we examine the palliative needs, services and outcomes for those living with ALS/MND in Ireland –patients, caregivers and families.

We document the patient’s journey through MND, and examine factors around diagnosis, multidisciplinary care and the economic and welfare implications of the condition on the family, caregiver and society (Living and dying with Amyotrophic Lateral Sclerosis: A Population based Analysis of Palliative Needs, Services and Outcomes in non-malignant terminal illness). As part of a European wide project – ALS-CarE (A Programme for ALS Care in Europe), patient and caregiver journeys are being assessed with data from 8 centres across 6 European countries, developing a best practice programme for ALS that can be subsequently modified for the management of other related degenerative diseases. This project addresses a number of questions around disease staging, end of life decisions, quality of life, caregiver burden, as well as examining the cost effectiveness of various models of service delivery.  

We want to develop an educational programme for families of those with ALS/MND, and health care professionals, and provide information about the cognitive, behavioural and personality changes that can occur in ALS/MND. This helps health care professionals to recognize the increased burden associated with thinking, behaviour and personality changes (Behavioural Changes in ALS: What Families Need to Know). By understanding the intricate relationship between cognitive decline, behaviour change, and caregiver needs, a clear pathway can be enunciated for health services to alleviate burden. Addressing the needs of caregivers will contribute to the better clinical management of patients both in a service setting, and at home.

The overall purpose of the study Defining and Addressing the Complex Needs of ALS Caregivers is to systematically investigate the consequences of cognitive and behavioural effects on caregiver burden. Investigation of the consequences of burden, and the identification of needs, will allow for the better management of needs and greater caregiver empowerment. A greater understanding of the dimensions and components of burden and experiences of caring for someone with ALS will facilitate tailored interventions to better support the caregiver.

This work is being directed by Prof Hardiman, the research team led by Senior Research Fellow Dr. Miriam Galvin, research assistants, PhD students and contributors: Sile Carney, Dr. Sinead Maguire, Dr. Katy Tobin, Dr. Padhraig Ryan, Rebecca Corr, Tommy Gavin, Dr. Ger Foley

In collaboration with Professor Anthony Staines (Health Systems, DCU); Professor Charles Normand (Health Policy and Management, TCD); Dr. Regina McQuillan (Palliative Care, St. Francis Hospice, and Beaumont Hospital); Ms. Bernie Corr (National MND Clinic, Beaumont Hospital); Dr.Niall Pender (Dept. of Psychology, Beaumont Hospital); Professor Christopher McDermott (Sheffield Institute for Translational Neuroscience); Professor Zachary Simmons (Penn State Hershey Medical Center, Pennsylvania); IMNDA; ALSCarE consortium partners…