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. Author manuscript; available in PMC: 2021 Feb 1.
Published in final edited form as: J Pediatr Gastroenterol Nutr. 2020 Feb;70(2):205–210. doi: 10.1097/MPG.0000000000002540

Parent IMPACT-III: Development and Validation of an Inflammatory Bowel Disease-specific Health-related Quality-of-life Measure

Grace K Cushman *, Mary Gray Stolz *, Sharon Shih , Ronald Blount *, Anthony Otley , Clair Talmadge §, Amy Grant , Bonney Reed §,
PMCID: PMC7189420  NIHMSID: NIHMS1581173  PMID: 31978018

Abstract

Objectives

The present study aimed to validate the parent-proxy IMPACT-III (IMPACT-III-P) in a sample of youth diagnosed with inflammatory bowel disease (IBD). Parent-proxy report measures are standard for pediatric psychosocial assessment, and the IMPACT-III-P will provide a more comprehensive representation of HRQOL. Reliability and validity analyses were conducted.

Methods

Parents (N = 50) of youth 8 to 17 years with IBD reported on their child’s HRQOL (IMPACT-III-P and PedsQL-4.0) and depression (BASC-2); youth reported on their HRQOL (child IMPACT-III), pain interference (PROMIS Pain Interference), and disease symptoms; and physicians completed measures of disease activity.

Results

Criterion validity was established as the IMPACT-III-P was strongly, positively associated with the PedsQL (r = 0.59, P < 0.001). Convergent validity was supported as higher IMPACT-III-P scores were associated with less pain interference (r = −0.41, P < 0.01) and lower depression (r = −0.41, P < 0.01). Discriminant validity was partially supported, as higher IMPACT-III-P scores were associated with lower child-reported symptoms (r = −0.41, P < 0.01), but scores did not differ based on inactive, mild, or moderate/severe disease activity groups as rated by physicians. Internal consistency, parent-child agreement, and item-level analyses revealed strong reliability.

Conclusions

The IMPACT-III-P demonstrated strong validity and reliability. Parents and children had similar reports of HRQOL, with parents rating child HRQOL slightly lower. Findings support the use of the IMPACT-III-P for youth 8 to 17 years old to use in accordance with the child IMPACT-III to provide valuable information regarding HRQOL in youth with IBD.

Keywords: Crohn’s disease, pediatric inflammatory bowel disease, psychosocial functioning, ulcerative colitis


Pediatric inflammatory bowel disease (IBD) can be considered a chronic stressor and burden on normal development (1). An estimated 20% to 30% of individuals with IBD have symptom onset before the age of 18 years, with research indicating symptoms are more severe and invasive with a younger age of onset (24). Youth with IBD report feeling a sense of vulnerability, perceive themselves as “different’” from same-aged peers (5), and experience lower quality of life compared with healthy peers (6). Health-related quality of life (HRQOL) refers to how a child’s illness affects his/her functioning across social, emotional, and physical functioning domains (7). Lower HRQOL has been associated with worse disease-related variables and psychosocial functioning, including greater disease severity (8), more pain interference (9), and worse internalizing symptoms (10,11).

As lower HRQOL is associated with worse functioning across multiple domains within IBD, a comprehensive representation of patients’ HRQOL through both a parent and child report measure is imperative. However, a validated parent-proxy report of disease-specific HRQOL for the pediatric IBD population has been lacking, limiting assessment options for research and clinical care. Youth and parent ratings of HRQOL vary within other pediatric gastrointestinal populations, such as functional abdominal pain (12), irritable bowel syndrome (13), and chronic constipation (14), and are hypothesized to be discrepant within pediatric IBD as well (15). Although some studies have shown moderate agreement in parent-child report (13), parents tend to rate lower HRQOL by proxy-report compared with child self-report. Furthermore, multi-informant assessment provides the most comprehensive appraisal and is the gold standard across established measures of child psychosocial functioning [eg, PROMIS measures (16), BASC-3 (17), PedsQL (18)] (19).

The IMPACT-III, a well-established measure of IBD-specific HRQOL, was created and validated as a child-report measure (20). Despite the child IMPACT-III’s reliability and validity, no parent-proxy version of the IMPACT-III has been validated for English-speaking youth in the United States. Additionally, reliability and validity of the parent IMPACT-III has yet to be established in relation to other constructs like clinical disease severity, psychosocial functioning, and pain. The purpose of the present study was to develop a parent-proxy measure of the IMPACT-III for parents of youth 8 to 17 years old, and to examine the associated psychometric properties of this IBD-specific measure of HRQOL.

METHODS

Measure Development

A parent-proxy version of the IMPACT-III (IMPACT-III-P) was created for use in this study to assess parent perspectives of children’s IBD-related HRQOL. The parent measure was developed by 3 of the authors (G.K.C., B.R., and A.O.) and was based heavily upon the child IMPACT-III (20) (for the purposes of this study, called IMPACT-III-C). Each item from the child measure was altered so that parents reported on children’s HRQOL, and items using personal pronouns (ie, you, your, my) were changed in order to fit the parent-proxy format (ie, my child, their, him/her). The IMPACT-III-P has a reading level of approximately fourth grade, includes 35 items, is constituted of 6 subscales (ie, Bowel Symptoms, Systemic Symptoms, Emotional Functioning, Social Functioning, Body Image, and Treatment/Interventions), and is appropriate to assess HRQOL of youth between 8 and 17 years old. The total score is calculated using the same methods as the child-report version.

Participants

Participants included 50 youth-caregiver dyads who were being seen at a large pediatric gastroenterology clinic in the Southeastern United States. Inclusion criteria for youth were that they: were diagnosed with Crohn’s disease (CD), ulcerative colitis (UC), or indeterminate colitis (IC) within the last 45 days, were fluent in English, had a parent or guardian who was willing to participate, and were between 8 and 17 years old. Exclusion criteria were: a documented history or parent report of a pervasive developmental disorder, autism, or a nonverbal presentation that would impede the ability to complete questionnaires and diagnosis with additional chronic illness (es) resulting in complex medical history differentiating the child from the rest of the sample (handled on a case-by-case basis). Inclusion criteria for parents was fluency in English. A total of 74 parent-child dyads were approached to participate in the study and 15 parents declined participation. An additional 9 dyads met inclusion criteria for diagnosis with IBD within the last 45 days but were not included in the study as remaining inclusion/exclusion criteria were not met (parent did not have rights to consent for research n = 1, parent did not speak English fluently n = 3, child had history of complex medical condition(s) n = 3, and child had developmental delay or cognitive impairment impeding the ability to complete questionnaires n = 2), resulting in a total of 50 dyads who completed measures.

Procedures

Participants were pre-screened for eligibility through an electronic medical chart review in collaboration with physicians and nurses at the gastroenterology clinic. Research staff met families at their clinic appointments to describe the study and obtain informed consent and assent. Study data were collected and managed using REDCap electronic data capture tools hosted at the investigators’ institution (21,22). REDCap (Research Electronic Data Capture) is a secure, web-based software platform designed to support data capture for research studies. Parents and children used separate iPads to independently complete measures while at the clinic appointment. Families were compensated for their time with gift cards.

Measures

Demographics and Medical Information

Demographic information for youth and parents was collected using a standard demographic questionnaire. Medical information was obtained via electronic chart review.

Health-related Quality-of-life

Parent-report of children’s HRQOL was assessed via the IMPACT-III-P, described above in Measure Development.

Child-report of their own HRQOL was assessed using the 35-item IMPACT-III-C (20). It is constituted of 6 subscales: Bowel Symptoms (7 items), Systemic Symptoms (3 items), Emotional Functioning (7 items), Social Functioning (12 items), Body Image (3 items), and Treatment/Interventions (3 items). Each item uses a 5-point Likert scale with values ranging from 1 to 5, with higher scores representing better HRQOL. A total score was calculated by summing the responses from all 35 questions.

The Pediatric Quality of Life Inventory-4.0 (PedsQL) parent-proxy report was included as a generic measure of children’s HRQOL and is not IBD-specific (18). It is constituted of 23 items that yield a total score and 4 subscales: social functioning, school functioning, emotional functioning, and physical functioning. Higher scores indicate better HRQOL.

Clinical Disease Activity/Symptoms

Clinical disease activity was examined via the Physicians Global Assessment (PGA). The PGA is a global measure of patients’ disease severity routinely completed by the treating pediatric gastroenterologist at each medical appointment as part of the site’s participation in ImproveCareNow (23). Participants are assigned a rating of quiescent (ie, inactive), mild, moderate, or severe disease activity based on clinical symptoms, examination, and labs.

Child-reported symptoms were examined with the Self-Report Disease Activity measure, a project-developed measure (L. Mackner, Personal communication) designed to assess symptoms of IBD at the time of participation based on patient report. Patients reported on their pain frequency and intensity in the past week, number of bowel movements (ie, solid, mushy, diarrhea), presence of nocturnal diarrhea, blood in stool, and impairment in daily activities. Higher scores indicate more clinical symptoms.

Pain Interference

Child-reported pain interference was measured using the Patient-Reported Outcomes Measurement Information System—Pain Interference (16) (PROMIS Pain Interference). The PROMIS Pain Interference consists of 8 items examining the extent to which children’s pain interfered with normative or preferred activities over the past 7 days. Total scores were converted to age- and gender-normed T-scores (M = 50, SD = 10).

Child Depression

The parent-report version of the Behavior Assessment System for Children-Second Edition (17) (BASC-2) was used to examine youths’ depression symptoms. T-scores were calculated using gender- and age-based norms (M = 50, SD = 10).

Data Analyses

Internal consistency of all parent-proxy and child report questionnaires were good to excellent (α > 0.85). Preliminary analyses (ie, t-tests, Pearson product-moment correlations) were conducted to examine associations between sociodemographic variables and the IMPACT-III-P. Feasibility of completing the IMPACT-III-P was determined by examining the percentage of missing values on this parent-proxy measure. Item-level analyses were conducted to determine item descriptive characteristics, the percentage of missing values for each item, the distribution of item responses, and the extent to which items correlated with the overall measure.

Intraclass correlations (ICCs) and paired-samples t-tests were used to determine agreement and discrepancies between the IMPACT-III-P and IMPACT-III-C. ICCs were used to assess absolute agreement between raters. Internal consistencies were determined for the overall measure as well as each of the 6 subscales using Cronbach alpha, based on the subscales of the child-report version.

Criterion validity, which assesses the relation between the new measure and an existing, established measure of the variable of interest (24), was assessed using Pearson product-moment correlations. Correlations were conducted between the total scores and comparable subscale scores (ie, emotional functioning, social functioning) on the IMPACT-III-P and the PedsQL. Convergent validity was examined via the extent to which the new measure replicates previous findings between the variable of interest (ie, HRQOL) and other constructs (25). This was examined via Pearson product-moment correlations between the IMPACT-III-P and measures of depression and pain interference. Discriminant validity was examined with a 1-way ANOVA to determine whether IMPACT-III-P scores differed between 3 distinct and mutually exclusive groups: those with inactive, mild, and moderate/severe disease activity. Child-reported symptoms, as measured via a continuous scale, were also examined via bivariate correlations in relation to IMPACT-III-P scores. Cohen’s (26) (1988) guidelines were used to characterize correlation coefficients as small (ie, 0.10), medium (ie, 0.30), or large (ie, 0.50).

Ethical Considerations

All study procedures were in compliance with the Health Information Portability Accountability Act and were reviewed and approved by the investigators’ Institutional Review Board before study commencement. All participants provided informed consent for the study.

RESULTS

Preliminary Analyses

Parent and child demographic characteristics can be found in Table 1. Means and standard deviations for all study variables are reported in Table 2. Correlational analyses between sociodemographic and medical variables and the IMPACT-III-P were conducted and revealed nonsignificant relations between HRQOL and child or parent age (P > 0.05).

Table 1.

Parent and child demographic information

Variable N (%) M (SD) Observed range

Parents
Age, years 45. 18 (5.48) 30–57
Female 39 (78%)
Race
 Caucasian 36 (76%)
 African American 9 (18%)
 Asian 1 (2%)
 More than one race 3 (6%)
 Unknown or not reported 1 (2%)
Relationship to child
 Biological or adoptive parent 49 (98%)
 Grandparent 1 (2%)
Marital status
 Married 36 (72%)
 Divorced/separated 11 (22%)
 Other 1 (2%)
 Unknown or not reported 2 (4%)

Child/adolescent N (%) M (SD) Observed range

Age, years 14.05 (2.24) 8–17
Female 28 (56%)
Race
 Caucasian 38 (76%)
 African American 9 (18%)
 Asian 2 (4%)
 More than one race 1 (2%)
IBD diagnosis
 Crohn disease 39 (78%)
 Ulcerative colitis 10 (20%)
 Indeterminate colitis 1 (2%)
Clinical disease activity (PGA)
 Quiescent (ie, inactive) 20 (40%)
 Mild 21 (42%)
 Moderate/severe 9 (18%)
Currently prescribed prednisone 24 (48%)

IBD = inflammatory bowel disease; PGA = Physicians Global Assessment; SD = standard deviation.

Table 2.

Descriptive information regarding study variables

Variable M (SD) Observed range
Parent reports
 Parent IMPACT
  Total score 125.66 (18.65) 81–164
  Bowel symptoms 24.02 (4.69) 15–33
  Systemic symptoms 10.50 (2.41) 4–15
  Emotional functioning 23.52 (5.46) 13–35
  Social functioning 46.36 (6.51) 31–58
  Body image 10.10 (2.09) 5–14
  Treatment/interventions 11.16 (2.53) 6–15
 PedsQL
  Total score 71.59 (15.57) 31–97
  Emotional functioning 69.90 (18.19) 35–100
  Social functioning 82.02 (16.12) 45–100
Child reports
 Child IMPACT
  Total score 134.18 (19.41) 78–165
  Bowel symptoms 25.14 (5.36) 12–34
  Systemic symptoms 10.78 (2.72) 4–15
  Emotional functioning 26.60 (5.62) 15–35
  Social functioning 48.62 (6.14) 31–59
  Body image 11.00 (2.44) 5–15
  Treatment/interventions 12.04 (2.51) 6–15
Depression 50.59 (9.85) 36–88
Pain interference 49.48 (10.57) 34–67
Disease symptoms 8.63 (7.48) 0–25

Higher scores on the parent/child IMPACT-III and the PedsQL indicate better HRQOL. Higher scores on pain interference and disease activity indicate more interference and disease activity. T-scores are shown for depression symptoms, with higher T-scores indicating higher levels of symptoms. HRQOL = health-related quality of life; PedsQL = Pediatric Quality of Life Inventory-4.0.

T-tests indicated no significant differences in HRQOL between male and female parents. Parents of boys reported higher overall HRQOL (M = 132.59, SD = 15.92) than girls (M = 120.21, SD = 18.88; t(48) = −2.46, P = 0.02, d = 0.71). Parents of youth diagnosed with CD did not endorse significantly different HRQOL on the total scale or subscales compared with parents of youth diagnosed with UC/IC.

Reliability Analyses

The percentage of missing item responses on the IMPACT-III-P was 0%, indicating that all parents provided a value for each item. Regarding item response distributions, a full range for 25 out of the 35 items was demonstrated and responses tended to be skewed toward higher HRQOL. Results indicated that 9 items (26%) had a strong correlation, 15 items (43%) had a moderate correlation, and 11 items (31%) had a small correlation with the overall measure.

Agreement between parent and child report was first examined via ICCs. As can be seen in Table 3, significant ICCs demonstrating parent-child agreement for HRQOL were found for the total score as well as all subscales. The ICCs for bowel symptoms was excellent and the total score, systemic symptoms, emotional functioning, social functioning, body image, and treatment/interventions were good. Next, paired samples t-tests were used to compare parent and child reports for the total score and each subscale. Children reported significantly higher overall HRQOL and in all subscales, except systemic symptoms.

Table 3.

Parent versus child report of health-related quality of life

Child M (SD) Parent M (SD) Mean difference (95% CI) t Cohen d ICC
Total score 134.18 (19.41) 125.66 (18.54) 8.52 (4.31–12.73) 4.07** 0.45 0.77**
Bowel symptoms 25.14 (5.36) 24.02 (4.69) 1.12 (0.04–2.20) 2.08* 0.22 0.83**
Systemic symptoms 10.78 (2.72) 10.50 (2.41) 0.28 (0.34–0.90) 0.91 0.11 0.78**
Emotional functioning 26.60 (5.62) 23.52 (5.46) 3.08 (1.4–4.69) 1.47** 0.56 0.65**
Social functioning 48.62 (6.14) 46.36 (6.51) 2.26 (0.70–3.82) 2.92** 0.36 0.77**
Body image 11.00 (2.44) 10.10 (2.09) 0.90 (0.23– 1.57) 2.69* 0.40 0.63**
Treatment/interventions 12.04 (2.51) 11.16 (2.53) 0.88 (0.22–1.54) 2.66* 0.35 0.73**

ICC values <.40 indicate poor reliability, values 0.41 to 0.60 indicate moderate reliability, values 0.61 to 0.80 indicate good reliability, and values 0.81 to 1.00 indicate excellent reliability (34); Cohen d values are characterized as small (ie, 0.20), medium (ie, 0.50), and large (ie, 0.80) (24). ICC = intraclass correlations; SD = standard deviation.

*

P < 0.05.

**

P < 0.01.

Internal consistency for the total score was excellent (α = 0.92); emotional functioning (α = 0.84), systemic symptoms (α = 0.84), and social functioning (α = 0.80) were good; bowel symptoms (α = 0.73) and treatment/interventions (α = 0.62) were acceptable; and body image (α = 0.38) was below the acceptable cut-off.

Validity Analyses

Regarding criterion validity, there was a strong, positive relationship between the total score on the IMPACT-III-P and the total score on the PedsQL (r = 0.59, P < 0.001), the IMPACT-III-P and PedsQL emotional functioning scales (r = 0.55, P < 0.001), and the IMPACT-III-P and PedsQL social functioning scales (r = 0.47, P = 0.001).

In examining convergent validity, results indicated a significant, negative relationship between the total IMPACT-III-P and youths’ pain interference (r = −0.41, P < 0.01), in that youth with higher parent-reported HRQOL endorsed less pain interference. The bowel symptoms (r = −0.55, P < 0.001), systemic symptoms (r = −0.38, P < 0.01), and emotional functioning (r = −0.39, P < 0.01) subscales were also negatively associated with pain interference. Results indicated no significant associations between youths’ pain interference and social functioning, body image, and treatment/interventions subscales. The total IMPACT-III-P (r = −0.59, P < 0.001), bowel symptoms (r = −0.42, P < 0.01), emotional functioning (r = −0.62, p < 0.001), social functioning (r = −0.52, P < 0.001), body image (r = −0.32, P = 0.03), and treatment/interventions scores (r = −0.44, P < 0.01) were all significantly, negatively associated with depression. The systemic symptoms subscale was not significantly related to depression.

Regarding discriminant validity, the total IMPACT-III-P score did not differ between physician-reported inactive (M = 127.00, SD = 21.04), mild (M = 128.56, SD = 14.67), or moderate/severe (M = 132.20, SD = 12.44) disease activity groups (P = 0.85). Subscale scores also did not differ by physician-reported disease activity groups (p > 0.05). However, the total IMPACT-III-P (r = −0.41, P < 0.01), bowel symptoms (r = −0.50, P < 0.001), systemic symptoms (r = −0.44, P < 0.01), and social functioning (r = −0.36, p = 0.01) were negatively associated with child-reported symptoms, in that more symptoms were associated with lower HRQOL. Emotional functioning, body image, and treatment/ interventions subscales were not associated with child-reported symptoms.

DISCUSSION

The aim of the present study was to examine the reliability and validity of a parent-proxy version of the IMPACT-III, an IBD-specific measure of HRQOL for youth 8 to 17 years old. Overall, the findings provide good support for both the validity and reliability of the IMPACT-III-P, a parallel measure to the established IMPACT-III-C. As hypothesized, criterion validity was supported, as the IMPACT-III-P was strongly associated with a preexisting, validated generic measure of HRQOL, the PedsQL. Significant associations were found between the total scores of these measures as well as between the comparable social and emotional subscales. Expanding upon the applicability of the PedsQL, the IMPACT-III-P provides IBD-specific HRQOL information, such as an in-depth examination of bowel symptoms and treatment/interventions. Disease-specific measures of quality of life can also provide the needed sensitivity to detect changes in health status and changes in disease severity that generic measures cannot (27).

Youth with higher rated HRQOL using the IMPACT-III-P were found to have fewer interruptions in their daily lives because of pain and lower depressive symptoms, which demonstrates good convergent validity. These findings are consistent with one study examining HRQOL and pain in pediatric functional and organic gastrointestinal disorders (28) as well as research examining the relation between HRQOL and depression in pediatric IBD (29).

Discriminant validity was partially supported, as the total IMPACT-III-P score did not differentiate between clinical disease activity groups as rated by the physician, but was significantly associated with child-report symptoms. Results indicated that as child-reported symptoms increased, IMPACT-III-P scores decreased. The difference in raters (ie, physician vs child) may explain these mixed findings, as children and physicians, especially within CD, have previously endorsed discrepant reports of clinical disease activity/symptoms (30). Previous research has also indicated that psychosocial functioning may be more related to patients’ subjective reports of symptoms or disease activity as opposed to more objective markers (31). Additionally, division of the relatively small sample size into 3 distinct disease groups for the physician report may have also contributed to underpowered analyses, which may explain the nonsignificant between-group findings.

As hypothesized, based on the results of the ICC analyses, inter-rater reliability between parent and child reports of HRQOL was good to excellent for the total measure and subscales, which is consistent with a previous study within pediatric irritable bowel syndrome demonstrating moderate agreement between raters (13). However, parents tended to endorse lower HRQOL than their children. These findings replicate the previous literature, in that parents of pediatric IBD patients are likely to report their child’s emotional and social functioning as lower compared with their children (15,32). Other confounding factors that may contribute to parent-child discrepancies are the age of the child, disease activity, parent-child communication, and parents’ own well-being (19) and it is, therefore, not surprising that these discrepancies were found.

The overall measure and its subscales had adequate to good internal consistency, with the exception of the body image subscale. This supports previous findings demonstrating low internal consistency within the body image subscale on the child-report measure (33,34). It is possible that the small number of items (ie, 3) in the Parent IMPACT-III body image subscale contribute to low internal consistency as fewer items restrict the potential range and variability of scores.

The IMPACT-III-P also proved to be a feasible measure, as parents in this study sample completed all items. This is comparable to the feasibility of the IMPACT-III-C, in which children also had high response patterns (20). Item to total correlations were also deemed adequate for the IMPACT-III-P, as the majority of the items had a moderate-to-strong correlation with the overall measure. This implies that each of the 35 items is appropriate to include in the measure. Therefore, the parent and child report versions of the IMPACT-III are comparable in terms of structure.

In addition to the aforementioned strengths, the creation of the IMPACT-III-P has notable implications, especially within the research domain. First and foremost, this measure has filled a gap in research and clinical settings, in that there is now a validated parent-proxy report of IBD-specific HRQOL for children ages 8 to 17. With this inventory, researchers and clinicians will be able to gather information about parents’ perceptions of their children’s HRQOL, as child and parent perceptions may differ (19). Moreover, assessment of both child and parent report provides a more comprehensive representation of child HRQOL, which could help identify risk factors for future disease or psychosocial outcomes within a research setting. Although likely infrequent, parent-report can also be used for those children who may be unable (ie, because of nonverbal developmental delays or younger age) or are unwilling (ie, because of refusal to complete questionnaires) to provide self-report. Multi-informant report is also recommended whenever possible, as it can provide a more comprehensive and accurate representation of a child’s functioning (19). The feasibility and relatively short nature of the IMPACT-III-P lends itself to effective and efficient use.

Although this study provides novel and important contributions to the existing literature, it is not without limitations. A larger sample size may support broader generalizability and increase statistical power, especially for between-group disease activity analyses. Additionally, although common in the literature (35), the current sample was predominately Caucasian and had a median annual family income of over $100,000. It is, therefore, not clear how these results apply to racial or ethnic minorities and lower SES families. The measure was also only validated in youth 8 to 17 years old, and therefore, should not be used for children outside that age range, as it is unclear how HRQOL-related issues for younger children may be similar or different from those ages 8 to 17 years old. Lastly, utilizing a longitudinal, as opposed to a cross-sectional design, could examine the stability of parent-reported HRQOL over time.

In summary, the IMPACT-III-P appears to be a reliable and valid measure of HRQOL in youth ages 8 to 17 years old diagnosed with IBD. The development and validation of this measure fills a long-standing gap in the literature and provides a means to examine parent-proxy reports of HRQOL for this age group, as well as provide a method to directly compare parent and child perceptions. It is recommended that the IMPACT-III-P be used alongside the child measure, as opposed to on its own, to provide the most comprehensive representation of child HRQOL. This measure can aid in the identification of youth with low HRQOL, who may be at risk for other negative outcomes and who may benefit from targeted interventions or additional support.

What Is Known

  • Pediatric patients with inflammatory bowel disease endorse impairments in health-related quality of life.

  • A parent proxy-report of inflammatory bowel disease-specific child health-related quality of life is needed to provide an option for comprehensive assessment of child psychosocial functioning but one has not yet been validated.

What Is New

  • The parent IMPACT-III demonstrates good reliability and validity in measuring children’s health-related quality of life.

  • There is good parent-child agreement on health-related quality of life but parents rate their children’s health-related quality of life slightly lower than the child.

  • The parent IMPACT-III can be used to assess children’s health-related quality of life in conjunction with the child measure or when child report is not feasible or appropriate.

Acknowledgments

This research was supported by both The Digestive Disease Research Fund at Children’s Healthcare of Atlanta and the National Center for Advancing Translational Science (NCATS) of the National Institutes of Health under Award Number UL1TR002378 and KL2TR002381.

Footnotes

The authors report no conflicts of interest.

The IMPACT-III, including all translated versions of the questionnaire, the IMPACT-III-P (English only) and the User’s Guide with Scoring Sheet (English only) are available by request from: impact@iwk.nshealth.ca.

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