Patient perspectives on the Poole PCT cancer genetics service

Abstract

Focussing on the primary care aspects of the Kenilworth model, the Poole Primary Care Trust (PCT) cancer genetics service has aimed to develop a high quality primary care-led service for the assessment and counselling of people concerned about their genetic risk of cancer. The service has been available through General Practitioner (GP) surgeries within the PCT since early 2006, and is delivered by Community Cancer Nurses as part of their role to provide proactive care and support to cancer patients, their families and the local population. Acting as a point of reference for cancer genetics at each practice, the nurses have supplied basic education to both health professionals and lay staff about the aims of the service and the genetic risk of cancer. Feedback from service users is one of the key elements of the Poole evaluation. This article is based on the views of some of the first patients referred. The patients consulted one of the cancer nurses between June and December 2006, and were interviewed by a researcher about their experience. The interviews focussed on the psychosocial aspects of the patients' experiences, which are less accessible through quantitative methods. The patients were encouraged to talk specifically and generally about their experiences, and described some of the feelings and emotions from the time of their referral onwards.

Current Genetic Service Delivery Models for the Provision of Genetic Testing in Europe: A Systematic Review of the Literature

“…Most articles focused on only one of these aspects, mainly genetic counseling, and were therefore excluded. The present systematic review consists of 117 records (Brain et al, 2000, 2002; Gray et al, 2000; Harper et al, 2000; Massie et al, 2000; Pichert and Stahel, 2000; Bach et al, 2001; Bickerstaff et al, 2001; Donnai and Elles, 2001; Ekstein and Katzenstein, 2001; Heath et al, 2001; Shepherd et al, 2001, 2003, 2014; Wonderling et al, 2001; Charron et al, 2002; Hartenbach et al, 2002; Lee et al, 2002; Lena-Russo et al, 2002; The Genetic Services Plan for Wisconsin, 2002; Anton-Culver et al, 2003; Barlow-Stewart et al, 2003; Campbell et al, 2003; Fry et al, 2003; Gason et al, 2003, 2005; Hopwood et al, 2003; Menkiszak et al, 2003; Rowland et al, 2003; Salbert, 2003; Comeau et al, 2004; Henriksson et al, 2004; Holloway et al, 2004; Kornreich et al, 2004; Basran et al, 2005; Calzolari and Baroncini, 2005; Epplein et al, 2005; Gozdzik et al, 2005; Hanley, 2005; Henry et al, 2005; Byck et al, 2006; Foretova et al, 2006; Gronwald et al, 2006; Mackay and Taylor, 2006; Puryear et al, 2006; Reis et al, 2006; Ricker et al, 2006; Therrell et al, 2006; Westwood et al, 2006; Windmill and Windmill, 2006; Young et al, 2006; Allen et al, 2007; Bennett et al, 2007, 2010; Berkenstadt et al, 2007; Brennan et al, 2007; Drury et al, 2007; Eeles et al, 2007; Gulzar et al, 2007; Mak et al, 2007; Morad et al, 2007; Southern et al, 2007; Srinivasa et al, 2007; Tozer and Lugton, 2007; Williams et al, 2007; Coffey et al, 2008; Eisinger, 2008; Kaye, 2008; Washing...…”

“…Thirteen records described more than one genetic program (Brain et al, 2000; Gray et al, 2000; Campbell et al, 2003; Fry et al, 2003; Hopwood et al, 2003; Holloway et al, 2004; Washington State Department of Health, 2008; Evans et al, 2009; Gu and Warren, 2009; Thuret et al, 2010; Aarden et al, 2011; Burton, 2012; Amato et al, 2014). Most of the programs were delivered in either the UK (59; 40%) (Brain et al, 2000, 2002; Gray et al, 2000; Harper et al, 2000; Bickerstaff et al, 2001; Donnai and Elles, 2001; Heath et al, 2001; Shepherd et al, 2001, 2003, 2014; Wonderling et al, 2001; Campbell et al, 2003; Fry et al, 2003; Hopwood et al, 2003; Holloway et al, 2004; Mackay and Taylor, 2006; Reis et al, 2006; Westwood et al, 2006; Young et al, 2006; Allen et al, 2007; Bennett et al, 2007, 2010; Brennan et al, 2007; Drury et al, 2007; Eeles et al, 2007; Gulzar et al, 2007; Mak et al, 2007; Southern et al, 2007; Srinivasa et al, 2007; Tozer and Lugton, 2007; Williams et al, 2007; Kaye, 2008; Evans et al, 2009, 2012; McCann et al, 2009; Streetly et al, 2009; Burton et al, 2010; Shields et al, 2010; Aarden et al, 2011; Hamblion et al, 2012; Ramsden et al, 2013; Turcu et al, 2013; Kirk et al, 2014; Nesbitt et al, 2014; Slade et al, 2015), the USA (35; 24%) (Bach et al, 2001; Ekstein and Katzenstein, 2001; Hartenbach et al, 2002; The Genetic Services Plan for Wisconsin, 2002; Anton-Culver et al, 2003; Salbert, 2003; Comeau et al, 2004; Kornreich et al, 2004; Epplein et al, 2005; Henry et al, 2005; Byck et al, 2006…”

The Provision of Genetic Testing and Related Services in Quebec, Canada

“…Indeed, the four genetic tests are also provided under Model II: Primary Care Model and Model III: Medical Specialist Model, while BRCA1/2 and LS genetic tests are also offered under Model IV: Genetic services integrated into population screening programs. The gradual integration of medical genetics in other disciplines has led to a major involvement of various healthcare professionals in genetic service provision and has paved the way for the development of new roles (e.g., genetic nurses, genetic counselors, genetic care coordinators) that actively support genetic teams in Quebec, as in other settings (Allen et al, 2007;Bennett et al, 2010;Burton et al, 2010;Bell et al, 2015;Unim et al, 2019). This is an attempt to adapt the healthcare system to the rapid development of genomic technologies that cannot be sustained by only one professional figure in the long run and requires collaboration among healthcare personnel and the redistribution of work.…”

A UK collaborative 1-day pilot information and support forum facilitated by a national breast cancer charity and NHS cancer genetic counsellors, for women at high risk, BRCA 1/2 gene carriers and hereditary breast cancer

“…Family history clinics and cancer genetic services are continually developing their ongoing information and psychological support services (Allen et al 2007;Crawford & Dubras 2010;Pichert et al 2010). However, effective longterm support is not always easy to achieve.…”