Danielsen Anne Kjærgaard
Surgical Department, Herlev Hospital, Herlev Ringvej 75, 2730 Herlev, Denmark.
Dan Med J. 2013 Oct;60(10):B4732.
Stoma creation is a surgical operation where the surgeon makes an artificial opening on the abdomen from where the bowel is taken out. It is a radical treatment with permanent physical signs of bodily change. In general, it leads to loss of a central and personal physical function, as well as an alteration in the bodily design. Research in the field may provide additional information about central elements when adapting to life with a stoma. There are currently no studies that adequately focus on the relationship between health-related quality of life and stoma construction in a Danish context, neither for temporary or permanent construction, nor in relation to the importance of stoma handling.
The overall objective of the study was to investigate health-related quality of life related to stoma creation and patient education. Methodologically, the project was implemented as a mixed methods study in which qualitative interview studies and two systematic literature reviews identified interventions, which were subsequently tested in a clinical case/control study. Finally the case/control study was made subject to an economic analysis. The project is based on 6 papers reporting the results. ARTICLE 1: Impact of a temporary stoma on patients everyday-lives: feelings of uncertainty while waiting for closure of the stoma. The study included 7 participants who were interviewed in focus groups. The results indicated that patients experienced a high degree of uncertainty in connection with the stoma being temporary. At the same time, participants had a strong need to control both their physical appearance and their changed bodily functions. Participants opted for education programs involving teachers with a stoma. ARTICLE 2: Learning to live with a Permanent Intestinal Ostomy: Impact on everyday life and Educational Needs. The study included 15 participants who were interviewed in groups related to whether they were treated for cancer or non-cancer. The results showed that participants often experienced the stoma as a taboo, and emotions related to stigma were identified. In addition, participants were influenced by the stoma in various ways, and the stoma imposed some restrictions on the participants. Participants pointed at group-based education, as well as the involvement of teachers who had a stoma. ARTICLE 3: Spouses of patients with a stoma lack information and support and are restricted in their social and sexual life: a systematic review. The study included 6 articles based on quantitative and qualitative data showing that spouses were affected in several ways by the construction of the stoma. The results pointed at spouses not being informed and supported sufficiently by neither enterostoma therapists or surgeons. ARTICLE 4: Patient education has a positive effect in patients with a stoma - a systematic review The study included 7 studies, all with quantitative results. They showed that patient education had a positive impact in several areas including shorter hospital stay, less time until proficiency in stoma management is reached, an increase in quality of life, increased knowledge about the stoma, and increased self-efficacy. ARTICLE 5: Health-related quality of life increases when patients with a stoma attend patient education - a case/control study. The study included 50 participants shortly after stoma creation. The results showed that the disease-specific quality of life was significantly increased in the intervention group, while generic health-related quality of life was positively affected in different dimensions in both groups. ARTICLE 6: Decreased costs with patient education after stoma creation. The study was an economic analysis based on participants in Article 5. The results indicated that there were fewer unplanned re-admissions related to the stoma, and that patients in the intervention group did not visit the general practitioner as much as patients in the control group. Furthermore, we found that the average cost per patient did not increase when establishing a patient education program.
The thesis concludes that patient education has a positive impact on patients' quality of life, and that costs are reduced. At the same time, it is concluded that living with a stoma is a complex situation, which also involves spouses and close relatives, and that patient education must be based on multiple interventions that are not all explored in this project.
造口术是一种外科手术，外科医生在腹部制造一个人工开口，将肠道从此处引出。这是一种具有永久性身体变化体征的根治性治疗方法。一般来说，它会导致一项核心且个人化的身体功能丧失，以及身体结构的改变。该领域的研究可能会在适应造口生活时提供有关核心要素的更多信息。目前在丹麦背景下，尚无充分关注与造口构建相关的健康相关生活质量的研究，无论是临时还是永久性构建，也未涉及造口护理的重要性。
该研究的总体目标是调查与造口术及患者教育相关的健康相关生活质量。从方法学上讲，该项目作为一项混合方法研究实施，其中定性访谈研究和两项系统文献综述确定了干预措施，随后在临床病例/对照研究中进行测试。最后，对病例/对照研究进行了经济分析。该项目基于6篇报告结果的论文。文章1：临时造口对患者日常生活的影响：等待造口闭合期间的不确定感。该研究包括7名参与焦点小组访谈的参与者。结果表明，患者在造口为临时性方面经历了高度的不确定性。同时，参与者强烈需要控制自己的身体外观和改变后的身体功能。参与者选择了由有造口的教师参与的教育项目。文章2：学会与永久性肠造口共存：对日常生活的影响和教育需求。该研究包括15名参与者，根据他们是否接受癌症或非癌症治疗进行分组访谈。结果表明，参与者经常将造口视为一种禁忌，并识别出与耻辱感相关的情绪。此外，参与者在各个方面受到造口的影响，造口对参与者施加了一些限制。参与者指出基于小组的教育，以及有造口的教师的参与。文章3：造口患者的配偶缺乏信息和支持，其社交和性生活受到限制：一项系统综述。该研究包括6篇基于定量和定性数据的文章，表明配偶在造口构建方面受到多种影响。结果指出，肠造口治疗师或外科医生都没有充分告知和支持配偶。文章4：患者教育对造口患者有积极影响——一项系统综述。该研究包括7项研究，均有定量结果。结果表明，患者教育在几个方面有积极影响，包括缩短住院时间、达到造口管理熟练水平所需时间减少、生活质量提高、对造口的了解增加以及自我效能感增强。文章5：造口患者参加患者教育后健康相关生活质量提高——一项病例/对照研究。该研究包括造口术后不久的50名参与者。结果表明，干预组的疾病特异性生活质量显著提高，而两组在不同维度上的一般健康相关生活质量均受到积极影响。文章6：造口术后患者教育降低成本。该研究是基于文章5中的参与者进行的经济分析。结果表明，与造口相关的计划外再入院减少，干预组患者去看全科医生的次数不如对照组患者多。此外，我们发现建立患者教育项目时每位患者的平均成本没有增加。
该论文得出结论，患者教育对患者的生活质量有积极影响，且成本降低。同时得出结论，与造口共存是一种复杂的情况，这也涉及配偶和近亲，并且患者教育必须基于多种干预措施，而本项目并未全部探讨这些措施。
