Recruiting individuals into the HTLV cohort study in the United Kingdom: clinical findings and challenges in the first six years, 2003 to 2009

Abstract

Human T-lymphotropic virus (HTLV) infection is rare in the United Kingdom (UK) and few studies are available worldwide. Following introduction of blood donation testing in 2002, a cohort of individuals could be identified and prospectively recruited to describe progression and onset of disease. Here we describe baseline characteristics of participants, and evaluate recruitment into the UK HTLV National Register over the first six years, from July 2003 to June 2009. A multicentre cohort study recruited participants from the UK blood services (recipients and donors) and specialist HTLV clinics. Almost half of the 148 participants recruited were blood donors, nine were blood transfusion recipients, 40 contacts and 29 clinic attendees (nine asymptomatic and 20 symptomatic). Most participants were HTLV-1 positive (n=115); 11 had HTLV-2 and 22 were HTLV-negative. Baseline self-completion questionnaires were received for 83%. The most commonly reported condition was a past operation/serious illness (69%). Twenty-six participants reported four or more possible signs/symptoms of HTLV-1-associated myelopathy/tropical spastic paraparesis. Recruitment into a study of a rare, long-term infection is challenging. This cohort will enable descriptions of HTLV-associated disease progression amongst people recruited from varying sources; it is the first prospective study of its kind in Europe.

Epidemiological Aspects and World Distribution of HTLV-1 Infection

“…Eq. Guinea, Equatorial Guinea; CAR, Central African Republic . !According to the CIA World Factbook 2012 estimations () . *According to Satake et al (2012) . **According to Brant et al (2011) . # According to the National Institute of Statistics and Economic Studies 2011 estimations () .…”

“…Europe represents around 400 millions of persons. Numerous epidemiological studies have been performed in this continent, mainly in blood donors and in pregnant women (Courtois et al, 1990 ; Courouce et al, 1993 ; Nightingale et al, 1993 ; Zaaijer et al, 1994 ; Dalekos et al, 1995 ; Ferrante et al, 1997 ; Hale et al, 1997 ; Tuset et al, 1997 ; Poljak et al, 1998 ; Ades et al, 2000 ; Machuca et al, 2000 ; Tseliou et al, 2004 , 2006 ; Vrielink and Reesink, 2004 ; Taylor et al, 2005 ; Davidson et al, 2006 ; Laperche et al, 2009 ; Brant et al, 2011 ). Furthermore, several large series of ATL and TSP/HAM have been reported (Gout et al, 1989 ; Rio et al, 1990 ; Plumelle et al, 1993 ; Martin et al, 2010 ; Ceesay et al, 2012 ).…”

“… *According to Satake et al ( 2012 ) . **According to Brant et al ( 2011 ) . # According to the National Institute of Statistics and Economic Studies 2011 estimations ( ) .…”

Protocolo Brasileiro para Infecções Sexualmente Transmissíveis 2020: infecção pelo vírus linfotrópico de células T humanas (HTLV)

“…Cabe señalar que la notificación de casos es uno de los pilares de las acciones para enfrentar e investigar el HTLV-1 en países como Japón, Inglaterra, España y la isla de Martinica. [175][176][177][178]…”

Safe supplies: few infections in UK blood and tissue donors

“…The HCV seroconverters are also invited to join the PHE HCV register to monitor the natural history of infections with known acquisition dates. The unit runs a similar register for HTLV (Brant et al, ), one of only two registers in the world still recruiting. The HTLV register has been running for 15 years and holds 564 person‐years of follow up, with no significant change in self‐reported health status so far.…”