Long-term health-related quality of life of patients with pediatric onset intestinal failure

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• 作者：Annika Mutanen^a ; ¹ ; ^{annika.mutanen@helsinki.fi" class="auth_mail" title="E-mail the corresponding author} ; Silja Kosola^a ; ¹ ; Laura Merras-Salmio^b ; Kaija-Leena Kolho^b ; Mikko P. Pakarinen^a
• 关键词：ALT ; alanine transaminase ; BMI ; body mass index ; EN ; enteral nutrition ; HRQoL ; health related quality of life ; IF ; intestinal failure ; PN ; parenteral nutrition ; QRS ; questionnaire for resources and stress ; SBS ; short bowel syndrome
• 刊名：Journal of Pediatric Surgery
• 出版年：2015
• 出版时间：November 2015
• 年：2015
• 卷：50
• 期：11
• 页码：1854-1858
• 全文大小：210 K

文摘

Despite improved survival rates of patients with pediatric intestinal failure (IF), data on health-related quality of life (HRQoL) of IF patients are still scarce. We hypothesized that I) continued parenteral nutrition, underlying intestinal motility disorder, abdominal pain and problematic bowel function would be associated with poorer HRQoL and higher parental stress levels, and II) the time intervals since the latest bowel operation, the latest episode of sepsis, and the latest inpatient care episode would be associated with better HRQoL and lower parental stress.

Methods

Patients with pediatric onset IF and their parents answered questionnaires on HRQoL, parental stress, and bowel-related symptoms. Clinical data were gathered by chart review. Controls matched for age and sex were randomly chosen by the Population Register Centre of Finland.

Results

Thirty-six (73%) IF patients participated at a median age of 9 years. Overall HRQoL was similar to healthy peers, and frequent abdominal pain was the only factor associated with poorer HRQoL. Abdominal pain and stool frequency > 3 times per day were associated with higher levels of parental stress, whereas longer time intervals since the latest bowel operation or hospitalization were associated with lower parental stress levels.

Conclusion

Long-term HRQoL of pediatric IF patients is comparable to that of healthy peers. Time often eases parental stress, but frequent abdominal pain presents a challenge to the well-being of some patients and requires medical attention.