Merrick Hannah, McConachie Helen, Le Couteur Ann, Mann Kay, Parr Jeremy R, Pearce Mark S, Colver Allan
Institute of Health and Society, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, UK.
Institute of Neuroscience, Newcastle University, Sir James Spence Institute, Royal Victoria Infirmary, Newcastle upon Tyne, NE1 4LP, UK.
BMC Health Serv Res. 2015 Sep 30;15:435. doi: 10.1186/s12913-015-1095-6.
For many young people with long term conditions (LTC), transferring from paediatric to adult health services can be difficult and outcomes are often reported to be poor. We report the characteristics and representativeness of three groups of young people with LTCs as they approach transfer to adult services: those with autism spectrum disorder with additional mental health problems (ASD); cerebral palsy (CP); or diabetes.
Young people aged 14 years-18 years 11 months with ASD, or those with diabetes were identified from children's services and those with CP from population databases. Questionnaires, completed by the young person and a parent, included the 'Mind the Gap' Scale, the Rotterdam Transition Profile, and the Warwick and Edinburgh Mental Wellbeing Scale.
Three hundred seventy four young people joined the study; 118 with ASD, 106 with CP, and 150 with diabetes. Participants had a significant (p < 0.001) but not substantial difference in socio-economic status (less deprived) compared to those who declined to take part or did not respond. Condition-specific severity of participants was similar to that of population data. Satisfaction with services was good as the 'gap' scores (the difference between their ideal and current care) reported by parents and young people were small. Parents' satisfaction was significantly lower than their children's (p < 0.001). On every domain of the Rotterdam Transition Profile, except for education and employment, significant differences were found between the three groups. A larger proportion of young people with diabetes were in a more independent phase of participation than those with ASD or CP. The wellbeing scores of those with diabetes (median = 53, IQR: 47-58) and CP (median = 53, IQR: 48-60) were similar, and significantly higher than for those with ASD (median = 47, IQR: 41-52; p < 0.001).
Having established that our sample of young people with one of three LTCs recruited close to transfer to adult services was representative, we have described aspects of their satisfaction with services, participation and wellbeing, noting similarities and differences by LTC. This information about levels of current functioning is important for subsequent evaluation of the impact of service features on the health and wellbeing of young people with LTCs following transfer from child services to adult services.
对于许多患有长期疾病（LTC）的年轻人来说，从儿科医疗服务过渡到成人医疗服务可能会很困难，而且据报道结果往往不佳。我们报告了三组患有长期疾病的年轻人在接近转至成人服务时的特征和代表性：患有自闭症谱系障碍且伴有其他心理健康问题的年轻人（ASD）；脑瘫（CP）患者；以及糖尿病患者。
从儿童服务机构中识别出年龄在14岁至18岁11个月的患有ASD或糖尿病的年轻人，以及从人口数据库中识别出患有CP的年轻人。由年轻人及其父母填写的问卷包括“注意差距”量表、鹿特丹过渡概况量表以及沃里克和爱丁堡心理健康量表。
374名年轻人参与了该研究；118名患有ASD，106名患有CP，150名患有糖尿病。与拒绝参与或未做出回应的人相比，参与者在社会经济地位方面存在显著差异（p < 0.001），但差异并不显著（较不贫困）。参与者特定疾病的严重程度与人口数据相似。对服务的满意度良好，因为父母和年轻人报告的“差距”分数（他们理想护理与当前护理之间的差异）较小。父母的满意度显著低于他们孩子的满意度（p < 0.001）。在鹿特丹过渡概况量表的每个领域，除了教育和就业领域外，三组之间均存在显著差异。与患有ASD或CP的年轻人相比，患有糖尿病的年轻人中有更大比例处于更独立的参与阶段。患有糖尿病的年轻人（中位数 = 53，四分位间距：47 - 58）和患有CP的年轻人（中位数 = 53，四分位间距：48 - 60）的幸福感得分相似，且显著高于患有ASD的年轻人（中位数 = 47，四分位间距：41 - 52；p < 0.001）。
在确定我们招募的接近转至成人服务的患有三种长期疾病之一的年轻人样本具有代表性之后，我们描述了他们对服务、参与和幸福感的满意度方面的情况，注意到了不同长期疾病之间的异同。这些关于当前功能水平的信息对于随后评估服务特征对从儿童服务转至成人服务后的患有长期疾病的年轻人的健康和幸福感的影响非常重要。
