Jordan Sue, Philpin Sue, Warring Joanne, Cheung Wai Yee, Williams John
School of Health Sciences, Swansea University, Singleton Park, Swansea, UK.
J Adv Nurs. 2006 Nov;56(3):270-81. doi: 10.1111/j.1365-2648.2006.04006.x.
This paper reports a study of patients' experiences of this relatively new technology, and explores possible strategies for defining, delineating and addressing patients' concerns, problems and needs.
The number of patients in the community relying on percutaneous endoscopic gastrostomy for their nutritional needs is increasing, but percutaneous endoscopic gastrostomy feeding is not problem-free. However, few studies report on its impact from a patient perspective.
Twenty adults with long-term percutaneous endoscopic gastrostomies were interviewed in their own homes, using both semi-structured and structured approaches. Qualitative data were analysed thematically and related to a symptom checklist and an established quality of life measure, the Short Form-12.
Most participants felt that insertion of a percutaneous endoscopic gastrostomy had been life-saving, but found that percutaneous endoscopic gastrostomy feeding came to dominate their lives and was associated with an appreciable "burden of treatment". Some, but not all, of the problems recounted were unavoidable: percutaneous endoscopic gastrostomy feeding inevitably imposed physical restrictions on mobility; 17/20 participants had experienced serious technical problems with their percutaneous endoscopic gastrostomy tubes. On structured questioning, all interviewees had some, potentially treatable, gastrointestinal symptoms, and eight had continuous problems. In some cases, the burden of treatment was exaggerated by being unanticipated and, for 13 patients, difficulties with care provided by non-specialist services. Describing this "burden of treatment" for each patient required both a narrative and a structured approach: without the symptom checklists, some important and treatable problems were missed. Both physical and mental health Short Form-12 scores were low, and mental health scores were congruent with the interview data.
It might be possible to reduce the "burden of treatment" identified by incorporating a structured approach to patient monitoring and by reviewing the occupational territories of specialist and non-specialist practitioners. Further research with larger numbers of participants is needed to explore the integration of narrative and quantitative data when determining patients' clinical needs.
本文报告了一项关于患者对这项相对新技术体验的研究，并探讨了界定、描述和解决患者担忧、问题及需求的可能策略。
社区中依靠经皮内镜下胃造口术满足营养需求的患者数量正在增加，但经皮内镜下胃造口术喂养并非毫无问题。然而，很少有研究从患者角度报告其影响。
采用半结构化和结构化方法，对20名长期接受经皮内镜下胃造口术的成年人进行了家访访谈。对定性数据进行了主题分析，并与症状清单以及既定的生活质量测量工具简明健康调查问卷12（Short Form-12）相关联。
大多数参与者认为经皮内镜下胃造口术的插入挽救了他们的生命，但发现经皮内镜下胃造口术喂养逐渐主导了他们的生活，并与相当大的“治疗负担”相关。所讲述的一些（但并非全部）问题是不可避免的：经皮内镜下胃造口术喂养不可避免地对行动能力造成身体限制；20名参与者中有17人在经皮内镜下胃造口管方面遇到了严重的技术问题。在结构化询问中，所有受访者都有一些可能可治疗的胃肠道症状，8人存在持续问题。在某些情况下，治疗负担因未被预期而加重，对于13名患者来说，非专科服务提供的护理存在困难。描述每位患者的这种“治疗负担”需要叙述性和结构化方法：没有症状清单，一些重要且可治疗的问题就会被遗漏。简明健康调查问卷12的身体和心理健康评分都很低，心理健康评分与访谈数据一致。
通过采用结构化方法进行患者监测并审查专科和非专科从业者的工作领域，可能有可能减轻所确定的“治疗负担”。在确定患者临床需求时，需要对更多参与者进行进一步研究，以探索叙述性和定量数据的整合。
