Faith Howard
Academic and research departments
Long-term Conditions and Ageing Expert Group, School of Health Sciences, Living and dying well research.About
My research project
PRO-FRAIL Project: Capturing and measuring what matters most to older people with frailty towards the end of lifeGlobal populations are ageing, and older people with frailty will become one of the main recipients of palliative care in the coming decades which will have significant implications on how health systems provide end-of-life services. Patient-reported outcome measures (PROMs) and Patient experience measures (PREMs) are increasingly used within healthcare to help provide person-centred care, improve quality of care and measure the impact of services. Studies have proved that within palliative care, PROMs are both beneficial to individuals and improve the quality of clinical practice. Such measures within end-of-life care have, however, been predominately developed with patients with cancer. It is not apparent the extent to which PROMs and PREMs address the expressed needs of older people with frailty, and their caregivers, or how they are used with this group towards the end of life.
This doctorate study has been developed to evaluate the existing PROMs used to capture and measure what matters most to older people with advancing frailty, and to build consensus with experts (professionals, those living with frailty and caregivers) on adapting a PROM/PREM to suit the needs of this group.
Aims:
Understanding how the routine use of patient centred clinical tools capture and address the needs and priorities of older people with frailty toward the end of life.
Adapt a clinical tool to ensure that it captures and addresses the needs and priorities of this group.
Click here for a 3 minute video explaining the study
Supervisors
Global populations are ageing, and older people with frailty will become one of the main recipients of palliative care in the coming decades which will have significant implications on how health systems provide end-of-life services. Patient-reported outcome measures (PROMs) and Patient experience measures (PREMs) are increasingly used within healthcare to help provide person-centred care, improve quality of care and measure the impact of services. Studies have proved that within palliative care, PROMs are both beneficial to individuals and improve the quality of clinical practice. Such measures within end-of-life care have, however, been predominately developed with patients with cancer. It is not apparent the extent to which PROMs and PREMs address the expressed needs of older people with frailty, and their caregivers, or how they are used with this group towards the end of life.
This doctorate study has been developed to evaluate the existing PROMs used to capture and measure what matters most to older people with advancing frailty, and to build consensus with experts (professionals, those living with frailty and caregivers) on adapting a PROM/PREM to suit the needs of this group.
Aims:
Understanding how the routine use of patient centred clinical tools capture and address the needs and priorities of older people with frailty toward the end of life.
Adapt a clinical tool to ensure that it captures and addresses the needs and priorities of this group.
Click here for a 3 minute video explaining the study
Faith joined the University of Surrey in October 2021 as a postgraduate researcher. Her Ph.D. work will focus on those with frailty in end-of-life care. Working closely with the PALLUP study led by Prof Caroline Nicolson, Faith’s work will focus on the feasibility and acceptability of Patient-Reported Outcome Measures for this patient group.
Faith has a background in nursing working in Oncology and community settings. More recently she has worked as a volunteer researcher at the Hospice in the Weald. Her current interests include community health, improving the quality of life for older adults, and developments in person-centered care.
Publications
Background: Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this.Aim: To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group.Design: The scoping review follows the method of Arksey and O’Malley. Results: Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures.Conclusion: Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care.
Additional publications
Beetham, B., Fasola, C. and Howard, F., 2022. Preferred Place of Death Discussions: Are They Informing and Empowering Patients and their Family Caregivers? OMEGA-Journal of Death and Dying, p.00302228221115587.
Howard F, Steggall M. Urinary incontinence in women: quality of life and help-seeking. British journal of nursing. 2010 Jun 24;19(12):742-9