University of Otago, Wellington, New Zealand.
J Pediatr Gastroenterol Nutr. 2012 Mar;54(3):397-400. doi: 10.1097/MPG.0b013e318231cf17.
Crohn disease (CD) presents a range of physical, social, and psychological challenges, and can adversely affect the quality of life of those affected by it. The present study aimed to investigate the health-related quality of life of paediatric patients with CD in the Wellington region. Measuring health-related quality of life assists with resource allocation decisions and assesses various forms of interventions.
Patients ages 9 to 18 years with CD in the Wellington region were assessed using the IMPACT-III inflammatory bowel disease-specific questionnaire (n = 16). Eight participants filled it out and returned it by post; the remaining 8 filled it out in a meeting with the researcher and then underwent cognitive debriefing as part of a cross-cultural adaptation of the questionnaire.
Of a maximum possible value of 175, the total health-related quality of life score had a mean value of 119.2 (standard deviation 30.7). Using Spearman rank correlation analysis, significant findings included a positive correlation between disease duration and quality of life (ρ = 0.534, sig. <0.05) and a negative correlation between disease activity and quality of life (ρ = -0.596, sig. <0.05). Qualitative information included difficulties in coping with long-term and unpleasant treatments and feelings of isolation.
Children with Crohn disease in the Wellington region may benefit from age-specific social and psychological support. Because there is limited information on quality of life in young patients with CD in New Zealand, the results of the present study may be used as baseline data for future studies.
克罗恩病(CD)会带来一系列身体、社会和心理方面的挑战,从而对患者的生活质量产生负面影响。本研究旨在调查惠灵顿地区儿童 CD 患者的健康相关生活质量。衡量健康相关生活质量有助于资源分配决策,并评估各种干预形式。
使用 IMPACT-III 炎症性肠病特异性问卷对惠灵顿地区 9 至 18 岁的 CD 患者进行评估(n=16)。其中 8 名参与者通过邮寄方式填写并返回问卷;其余 8 名参与者在与研究者的会议上填写问卷,然后进行认知审查,作为问卷跨文化适应的一部分。
在 175 的最高可能值中,健康相关生活质量总分为 119.2(标准差 30.7)。使用 Spearman 等级相关分析,得出以下显著结果:疾病持续时间与生活质量呈正相关(ρ=0.534,sig. <0.05),疾病活动度与生活质量呈负相关(ρ=-0.596,sig. <0.05)。定性信息包括长期和不愉快治疗带来的应对困难以及孤立感。
惠灵顿地区的 CD 患儿可能需要特定于年龄的社会和心理支持。由于新西兰关于年轻 CD 患者生活质量的信息有限,本研究的结果可用作未来研究的基线数据。