Clinical and Ethical Challenges in Undertaking LIMPRINT in Vulnerable Populations.

Christine J Moffatt,Susie Murray,Sarah Pankhurst,Martina Sykorova,Susan Gordon,Rachel Bussey,Gregoire Mercier,Siobhan Whiston,Isabelle Quéré,Peter John Franks,Aimee Aubeeluck

doi:10.1089/lrb.2018.0083

Abstract

Background and Study Objective: To estimate the prevalence of chronic edema (CO) and wounds within two vulnerable populations, a male high security prison in the East Midlands (United Kingdom) and residential and nursing homes in the United Kingdom and Australia.Methods and Results: Methods for screening for CO and wounds were adapted from the main LIMPRINT methodology.Prison Population: In total, 195 inmates were recruited with 22 (11%) having CO. While the majority were white Caucasian (156/83.4%) a further 20 (10.7%) were dark skinned with 11 (5.95%) from other minority populations. Comorbidities included 123 (63%) smokers, 22 (11%) alcohol dependant, 60 (31%) with mental health problems, and 35 (18%) a history of self-harm. Only three had a current wound with 30 (16%) having had a traumatic stab wound.Residential and Nursing Homes (United Kingdom and Australia): In the United Kingdom, the total population available for inclusion was 189 with only 137 (73%) recruited. Seventy-two of the 137 (52%) suffered from CO and a further 16 (23%) had a history of cellulitis. Results from the Australian residential care facilities have been published in full. In summary, of the 37 participants 20 (54%) experienced CO with 25 (68%) having comorbidities and 11 (30%) having a concurrent wound.Conclusion: Obtaining an accurate picture of the prevalence and impact of CO in vulnerable populations is extremely challenging due to issues of access and consent. Lack of reliable data for these populations will contribute to poor service provision.

Highlights

LIMPRINT backgroundLimprint—(Lymphoedema IMpact and PRevalence– INTernational: International Lymphoedema Framework)
This article addresses the complex ethical challenges faced during LIMPRINT, an international epidemiology study to determine the size and impact of chronic edema (CO) within complex health and social care settings and the implications this has for adoption of a public health approach to care provision
The term ‘‘chronic edema’’ is commonly used in place of ‘‘lymphedema’’ as this encompasses all forms of edema, which persist for 3 months or longer, irrespective of the etiology and corresponding comorbidities and risk factors.[1]

Summary

Introduction

LIMPRINT backgroundLimprint—(Lymphoedema IMpact and PRevalence– INTernational: International Lymphoedema Framework). To estimate the prevalence of chronic edema (CO) and wounds within two vulnerable populations, a male high security prison in the East Midlands (United Kingdom) and residential and nursing homes in the United Kingdom and Australia. Attempted in a range of settings in the United Kingdom, including nursing and residential care homes, social care services at home, a large male prison, and an acute mental health institution. Complex issues, including capacity and inability to provide informed consent, limit a true appreciation of the size and impact of the problem in vulnerable patient groups despite the likelihood of them having a high prevalence due to known comorbidities and risk factors. Nursing homes in the United Kingdom are often private businesses and employ a registered nurse to oversee the care of residents as defined below: Factors associated with the presence of chronic edema No edema Chronic edema OR (95% CI) p

Methods

Results

Discussion

Conclusion