Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

Abstract

Background: Due to altered nutrition regimens and complex medical needs, pediatric intestinal failure (IF) may have a powerful impact on health-related quality of life (HRQOL). Studies have shown that children with IF experience lower HRQOL. Data on the HRQOL of families of children with IF are lacking. Methods:We performed a prospective analysis of the HRQOL of families of children with IF in a regional intestinal rehabilitation program from 2011 to 2018. The Pediatric Quality of Life Family Impact Module (FIM) was administered annually to parents. FIM scores were regressed on risk factors using linear mixed-effect models that accounted for repeated surveys within families.Results: A total of 117 families completed 272 surveys. FIM scores increased with patient age across nearly all survey dimensions. Total FIM scores were lower when compared to families of healthy children (median differences = -5, P = .01) and similar to families of chronically ill children. While IF families reported major deficits in the Communication (-11, P < .001) and Worry (-17, P < .001) dimensions, they also reported higher Family Relationship scores (+7, P < .01). On multivariable regression, presence of a major comorbidity and four or more hospital admissions in the prior year were associated with lower family HRQOL (P < .05). Parenteral nutrition dependence was independently associated with lower scores in the Communication (-7, P = .03) and Daily Activities (-10, P = .02) dimensions. Conclusion:Families of children with IF experience a decreased HRQOL that may improve with patient age. Intestinal rehabilitation programs should address the HRQOL of families in addition to patients.

A beautiful struggle: Parent-perceived impact of short bowel syndrome on child and family wellbeing

“…The data also reveal that, while the impact of their child's condition on parent and family life is not negligible, families in the study sample developed a routine to care for their child's condition, and many reported successfully integrating their child's care into family life. This finding is consistent with results presented by Neam et al (2021), who find that, on overage, parents of children with IF scored higher on overall family functioning and family relationships than both parents of well-and chronically ill children [18]. The authors hypothesize that, over time, families learn to adapt and incorporate their child's care into family routines, and that caring for a child with IF may help to strengthen family bonds.…”

“…Given the non-normal distributions of the outcome variables and the limited sample size, nonparametric tests were used in all subsequent analyses. A dichotomous school age vs. younger than school age variable was constructed based on recent research which has reported decreased child and family QOL for school-aged children compared to younger children [16][17][18]. Bivariate analyses were performed to examine a difference in FaMM sub-scores by child age group, whether a child had siblings, and IRP status, utilizing the Mann-Whitney U Test.…”

“…To date, several studies have investigated health-related quality of life (HRQOL) for children with SBS or IF and their caregivers [10][11][12][13][14][15][16][17][18]. This research has mostly presented evidence that children with SBS have a lower overall QoL than their healthy peers or even children with other chronic illnesses, particularly with respect to physical health and social and school functioning [10][11][12][13][14][15][16][17][18].…”

“…To date, several studies have investigated health-related quality of life (HRQOL) for children with SBS or IF and their caregivers [10][11][12][13][14][15][16][17][18]. This research has mostly presented evidence that children with SBS have a lower overall QoL than their healthy peers or even children with other chronic illnesses, particularly with respect to physical health and social and school functioning [10][11][12][13][14][15][16][17][18]. However, data collection efforts thus far are largely based on individual centers' patient populations, have relied heavily on generic rather than diseasespecific survey tools, and have been overly focused on "ill-being" (i.e., the presence or absence of negative states or experiences) rather than "well-being".…”

Intestinal failure among adults and children: Similarities and differences

“…162 The impact of providing this care has resulted in caregivers experiencing increased stress, anxiety, and depression and decreased HRQOL. [163][164][165][166][167] Additionally, the effects on decreased sleep, due to frequent nighttime interruptions requiring care, have also been reported. 168…”