Kirk Maggie, Simpson Amy, Llewellyn Mark, Tonkin Emma, Cohen David, Longley Marcus
University of South Wales, Pontypridd, UK
University of South Wales, Pontypridd, UK.
Eur J Cardiovasc Nurs. 2014 Oct;13(5):418-28. doi: 10.1177/1474515113502748. Epub 2013 Sep 6.
Cardiovascular disease is a leading cause of death worldwide and genetic risk factors play a role in nearly all such cases. In the UK, health service capacity to meet either current or future estimated needs of people affected by inherited cardiac conditions (ICCs) is inadequate. In 2008 the British Heart Foundation funded nine three-year Cardiac Genetics Nurse (CGN) posts across England and Wales to enhance ICC services. The CGNs were experienced cardiac nurses who had additional training in genetics and acted to coordinate cardiac and genetics service activities.
To create and apply a framework against which progress in ICC service improvement could be measured over time following the CGN appointments.
A performance grid (Maturity Matrix, MM) articulating standards in five domains against stages of ICC service development was created by stakeholders through a consensus approach. The MM was used to guide staged self-assessments by the CGNs between 2009 and 2011. A six-point scale was used to locate progress from 'emerging' to 'established', represented graphically by spider diagrams.
Progress in all domains was significant for new, emerging and established services. It was most notable for effective utilisation of care pathways and efficient running of clinics. Commitment to family-centred care was evident.
The ICC-MM provided a comprehensive framework for assessing ICC services and has merit in providing guidance on development. CGNs can help integrate care across specialisms, facilitating the development of effective and sustainable ICC services at new, developing, and more established ICC service locations.
心血管疾病是全球主要的死亡原因，遗传风险因素几乎在所有此类病例中都起作用。在英国，医疗服务机构满足当前或未来预计受遗传性心脏病（ICC）影响人群需求的能力不足。2008年，英国心脏基金会在英格兰和威尔士资助了9个为期三年的心脏遗传学护士（CGN）岗位，以加强ICC服务。CGN是经验丰富的心脏护士，他们接受了额外的遗传学培训，并负责协调心脏和遗传学服务活动。
创建并应用一个框架，据此可以衡量CGN任命后ICC服务改进随时间推移取得的进展。
利益相关者通过共识方法创建了一个绩效网格（成熟度矩阵，MM），该网格阐述了ICC服务发展阶段五个领域的标准。MM用于指导CGN在2009年至2011年期间进行分阶段的自我评估。使用六点量表来确定从“新兴”到“成熟”的进展情况，并用蜘蛛图以图形方式表示。
新的、新兴的和成熟的服务在所有领域都取得了显著进展。在有效利用护理路径和高效运营诊所方面最为显著。以家庭为中心的护理承诺很明显。
ICC-MM为评估ICC服务提供了一个全面的框架，在为发展提供指导方面具有价值。CGN可以帮助整合各专业的护理，促进在新的、发展中的和更成熟的ICC服务地点发展有效且可持续的ICC服务。
