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Journal of Pediatric Psychology logoLink to Journal of Pediatric Psychology
. 2020 Dec 3;46(4):404–412. doi: 10.1093/jpepsy/jsaa116

Temperament and Health-Related Quality of Life in Newly Diagnosed Pediatric Inflammatory Bowel Disease

Sharon Shih 1, Grace Cushman 2, Bonney Reed 3,✉
PMCID: PMC8274459  PMID: 33270892

Abstract

Objective

Health-related quality of life (HRQOL) is typically examined from a deficit standpoint, meaning that little is known about factors associated with higher HRQOL in pediatric illness samples. The aim of the current study was to investigate demographic, disease, and temperamental factors associated with child and parent-report of HRQOL in youth newly diagnosed with inflammatory bowel disease (IBD).

Methods

Participants included 52 youth ages 8–17 diagnosed with IBD and their caregivers who each completed ratings of the child’s HRQOL. Parents rated their child’s emotional reactivity, conceptualized as a temperamental risk factor, and adaptability, conceptualized as a temperamental protective factor. Disease symptoms were rated by youth, and physician global assessment of disease activity was obtained.

Results

HRQOL was rated lower by children and their parents as self-reported disease symptoms and parent-rated emotional reactivity increased. Conversely, total HRQOL was higher for children with higher parent-ratings of adaptability. In multiple regression analyses, higher levels of adaptability along with male sex and lower child-reported disease symptoms were associated with higher child and parent-reported HRQOL.

Conclusions

Higher HRQOL at time of diagnosis in pediatric IBD is associated with greater adaptability when accounting for variability due to child sex and disease symptoms. Consideration of temperament, including emotional reactivity and adaptability, may offer insight into patients’ typical ways of responding when stressed and provide preliminary information about factors related to post-diagnosis HRQOL. Attention should be given to both protective and risk factors to inform future intervention development, including strengths-based approaches.

Keywords: adolescents, inflammatory bowel disease, parents, quality of life, resilience

Introduction

Pediatric inflammatory bowel disease (IBD) is an umbrella term for chronic, inflammatory conditions of the gastrointestinal system, including Crohn’s disease (CD), ulcerative colitis (UC), and indeterminate colitis (IC). Children who are diagnosed with IBD experience symptoms including weight loss, lethargy, abdominal pain, diarrhea, rectal bleeding, and poor growth (Malaty et al., 2010). IBD symptoms and treatment side effects can be unpredictable (Diefenbach & Breuer, 2006), which likely contribute to patients’ perceived lack of control and symptom-related worry (Nicholas et al., 2007).

A common metric for assessing psychological and physical well-being in the context of chronic illness is health-related quality of life (HRQOL). HRQOL is an individual’s perception of how their health status impacts multiple domains of daily living, such as emotional, social, school, and physical functioning (Ingerski et al., 2010). HRQOL has been found to be significantly lower in children diagnosed with IBD as compared to healthy peers and similar to or higher when compared to other pediatric chronic medical conditions (Knowles et al., 2018). Factors associated with poor HRQOL in pediatric IBD include disease activity, internalizing symptoms (e.g., anxiety, depression), and poor family functioning, although limited literature has examined HRQOL in youth who are newly diagnosed (Gray et al., 2011; Varni et al., 2016).

Little is known about how temperamental characteristics are related to HRQOL in this population. Temperamental characteristics are relatively stable and enduring attributes that can influence how individuals respond to and cope with stressful life events (Wachs, 2006). In this way, temperamental characteristics can confer risk for poorer outcomes in the context of stress or serve as protective buffers associated with better than anticipated outcomes (Masten & Barnes, 2018; Wachs, 2006). Emotional reactivity and adaptability are temperamental characteristics that are yet to be examined in pediatric IBD and may be of particular interest in relation to HRQOL. Emotional reactivity is a dispositional attribute characterized by emotional responses that are intense, peak rapidly, and/or are slow to return to baseline (Davidson, 1998). When confronted with the same emotional stimuli, individuals who are high in emotional reactivity tend to experience a more intense emotional response as compared to those who are low in emotional reactivity (Aldao et al., 2015). This disposition towards having more intense or labile emotional responses has been identified as a predictor of internalizing symptoms in a community sample of adolescents (Shapero et al., 2016) and has been associated with lower HRQOL in youth with Type 1 diabetes (Jaser et al., 2012). Findings suggest that children who are emotionally reactive may be more likely to experience negative outcomes in the face of adversity, such as in the context of a new medical diagnosis.

Conversely, children’s adaptability (i.e., the ability to quickly and easily adjust to changes in environment or unexpected circumstances) may be a distinct construct that promotes positive psychosocial outcomes (Brock & Curby, 2016; Mendez et al., 2002). The developmental literature indicates that children who are higher in adaptability demonstrate better self-regulation and coping skills, which are protective against internalizing symptoms (Wachs, 2006). In a study of risk and resilience in pediatric asthma, higher levels of adaptability at baseline were predictive of more optimal disease management at follow-up (Mitchell et al., 2004).

Considering these findings, emotional reactivity and adaptability may have important differential implications for HRQOL in youth newly diagnosed with IBD, such that emotional reactivity is a risk factor while adaptability is a protective factor for HRQOL outcomes. It may be particularly meaningful to assess how these temperamental constructs are related to HRQOL at a vulnerable period in the disease process, such as at the time of diagnosis when HRQOL is significantly lower than later in the disease course (Otley et al., 2006). Fluctuations in disease activity and treatment demands shortly after diagnosis likely influence reports of HRQOL but more stable traits such as emotional reactivity and adaptability offer insight into patient’s typical ways of responding to new, challenging situations.

Moreover, within IBD research, HRQOL has typically been assessed for the purpose of identifying those at risk of negative outcomes. However, it can also be conceptualized as a positive, or resilient, outcome, such that higher levels of HRQOL are representative of adaptation in the face of illness-related adversity (Hilliard et al., 2015). Taking a departure from a deficit perspective on psychosocial outcomes allows for investigation of protective factors, which have only begun to be examined in pediatric IBD (Carlsen et al., 2017; Gamwell et al., 2020). The value in identifying temperamental characteristics associated with the continuum of HRQOL lies in how we may leverage those qualities related to higher HRQOL to promote positive outcomes (Masten & Barnes, 2018).

In the current study, the main aim was to investigate associations between emotional reactivity, a temperamental risk factor, adaptability, a temperamental protective factor, and parent and child ratings of child HRQOL in a sample of youth with newly diagnosed IBD. For both parent and child reported HRQOL, we expected to find a negative relationship with emotional reactivity and a positive relationship with adaptability. We also hypothesized that both emotional reactivity and adaptability would uniquely and significantly contribute to the variance observed in both parent and child reported HRQOL.

Methods

Participants

Participants included caregivers and youth diagnosed with IBD (CD, UC, IC) recruited from the Southeastern United States. Inclusion criteria for youth included: (a) diagnosis with biopsy-confirmed IBD within the last 45 days, (b) age 8 through 17 years, and (c) proficiency in the English language. Exclusion criteria for youth were a parent report or documented history of a pervasive developmental disorder, autism, or a nonverbal presentation that would impede the ability to complete questionnaires. Inclusion criteria for parents included: (a) having guardianship or legal rights to consent to research, (b) serving as one of the child participant’s primary caregivers, and (c) proficiency in the English language.

Procedures

The current study was part of a larger study in which youth were recruited from an outpatient pediatric gastroenterology clinic and an inpatient medical unit. Families were identified by the medical team and pre-screened for initial eligibility through electronic chart review. Families were contacted via telephone prior to their next outpatient clinic visit and provided information about the study. Research staff met parents and youth at their appointment to further describe the study and to obtain informed parent consent and child assent. After providing consent, parents and children used iPads to independently complete measures. Questionnaire data were collected and managed using Research Electronic Data Capture (REDCap) tools hosted at the investigators’ institution. REDCap (Harris et al., 2019) is a secure, web-based software platform designed to support data capture for research studies. Families received a gift card as compensation for their time. All study procedures complied with the Health Information Portability Accountability Act and were approved by the investigators’ Institutional Review Board prior to study commencement.

Measures

Demographic Information and Clinical Characteristics

Demographic information for youth and parents (e.g., age, sex, race, annual family income, relation to the child) was collected using a standard demographic questionnaire. Medical and disease information (e.g., diagnosis, time since diagnosis) were abstracted via electronic chart review.

Health-Related Quality of Life

Children’s HRQOL was assessed using the child and parent-proxy reports of the IMPACT-III (Cushman et al., 2020a; Otley et al., 2002). The 35-item child and parent reports of the IMPACT-III are IBD-specific measures of HRQOL validated in children and adolescents ages 8–17. The child and parent-proxy reports of the IMPACT-III have demonstrated good validity (i.e., construct, convergent, discriminant) and reliability. They are comprised of six domains: Bowel Symptoms, Systemic Symptoms, Emotional Functioning, Social Functioning, Body Image, and Treatment/Interventions. Each item (e.g., How often did you have to miss out on certain things [hobbies, play, parties] because of your inflammatory bowel disease in the past two weeks?) has five response options, with response labels that differ from item-to-item. To gain a comprehensive understanding of children’s HRQOL, the present study utilized the total score, which was calculated by summing all 35 items with higher scores representing better HRQOL. No clinical cutoffs are available for these measures. Internal consistency for the child report (α = .91) and parent report (α = .92) were both excellent in the current study.

Adaptability

Parent report of children’s adaptability was collected using the Adaptability Subscale from the Behavior Assessment System for Children-2, Parent Rating Scales (BASC-2 PRS; Reynolds & Kamphaus, 2004). The PRS-Child was administered to parents of youth 8–11 years old and the PRS-Adolescent was administered to parents of youth 12–17 years old. The Adaptability scale specifically assesses how well youth adapt to changes across a variety of contexts and situations (e.g., Adjusts well to changes in plans) and has been conceptualized as a protective factor in prior research with pediatric illness samples (Mitchell et al., 2004). Items are rated on a 4-point scale (Never, Sometimes, Often, Almost Always) and yield age- and gender-normed T-scores based on normative data, with higher T-scores indicating a greater ability to adapt. T-scores above 40 are considered within normal limits, 31–40 are considered at-risk, and below 30 indicate clinically significant impairments in adaptability. Internal consistency for the child (α = .86) and adolescent (α = .81) versions were considered good.

Emotional Reactivity

The 10-item Parent Report of Children’s Reactions (PRCR) (Reynolds & Alfano, 2016) was used to assess children’s emotional reactivity. The PRCR was developed based on items from the Affective Intensity Scale (Larsen & Diener, 1987) and has been used in samples of children in early and late childhood. Parents reported the frequency of emotional responses (e.g., When my child feels an emotion, either positive or negative, my child feels it strongly) using a 5-point scale ranging from Never to Always and items are summed to compute a total Emotional Reactivity score with a range of 10–50, with higher scores indicating more reactivity. No clinical cutoff is currently available. In the current study, emotional reactivity was conceptualized as a temperamental risk factor due to its associations with negative psychosocial outcomes in prior literature (Jaser et al., 2012). The PRCR demonstrated good reliability in the current study (α = .83).

Child-Reported Disease Symptoms

Child-reported symptoms were examined with the Self-Report Disease Activity (SRDA) measure, a project-developed measure (L. Mackner, Personal communication) that has been used in previously published pediatric IBD research (Cushman et al., 2020a). The SRDA is a 5-item patient-report measure that assesses IBD symptoms at the time of participation. Youth reported on their pain frequency and intensity in the past week, number and consistency of bowel movements (i.e., solid, mushy, diarrhea), presence of nocturnal diarrhea, blood in stool, and impairment in daily activities. Higher scores indicate more clinical symptoms.

Physician-Reported Disease Activity

Clinical disease activity was examined via the physician global assessment (PGA; Crandall et al., 2011), a global measure of patients’ disease severity routinely completed by the treating pediatric gastroenterologist at each medical appointment. Physicians rate patients’ disease activity based on objective (e.g., weight loss, lab tests, number of bloody stools) and subjective markers (e.g., abdominal pain, fatigue, abdominal tenderness) of disease and assign a rating of quiescent (i.e., inactive), mild, moderate, or severe disease activity.

Data Analytic Plan

All analyses were conducted with SPSS 25.0 software. Descriptive statistics (mean, standard deviation, skewness, kurtosis) were conducted to evaluate the distribution of variables included in analyses and to describe the sample. Differences in HRQOL based on child sex were evaluated using independent samples t-tests based on significant relations in prior research. One-way ANOVAs were used to determine whether emotional reactivity, adaptability, and HRQOL differed by physician-reported disease groups. Partial correlations controlling for child sex were conducted to examine intercorrelations between parent-reported emotional reactivity and adaptability and parent and child-reported HRQOL. Multiple linear regression analyses were conducted to examine the associations between HRQOL and child sex, disease symptoms, and temperamental characteristics. Due to the theoretical and statistical relations found between HRQOL, sex, and disease symptoms, child sex was entered in the first step and disease symptoms were entered in the second step in both the child and parent-reported models. Emotional reactivity was then entered to model a temperamental risk factor, and adaptability was entered in the final step as a temperamental protective factor.

Results

Participant Characteristics

A total of 81 parent–child dyads were approached to participate in the study and 16 parents declined participation. Nine 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. Four dyads did not complete all questionnaires needed for the current project, resulting in a total of 52 dyads included. Parents were primarily mothers (n = 40), followed by fathers (n = 11) and 1 grandparent. Youth were majority female and ranged in age from 8 to 17 years (M = 14.22, SD = 2.30) and parents reported a mean age of 45.25 years (SD = 5.60). As this was a newly diagnosed sample, the youth had been diagnosed with IBD for a mean of 26.23 days (SD = 11.78). Additional demographic and disease-related information is presented in Table I.

Table I.

Participant Demographic and Disease Information (N = 52 patients).

Factor M (SD) n (%)
Child age 14.22 (2.30)
Parent age 45.25 (5.60)
Child gender
 Female 29 (55.8)
 Male 23 (44.2)
Child race
 White/Caucasian 40 (76.9)
 Black/African American 10 (19.2)
 Asian 2 (3.8)
Family income
 $10,000 to $49,999 7 (13.5)
 $50,000 to $74,999 12 (23.1)
 $75,000 to $99,999 7 (13.5)
 $100,000 to $124,999 9 (17.3)
 $125,000 to $149,999 5 (9.6)
 Above $150,000 11 (21.2)
 Missing/chose not to respond 1 (1.9)
Diagnosis type
 Crohn’s disease 41 (78.8)
 Ulcerative colitis 10 (19.2)
 Indeterminate colitis 1 (1.9)
Disease severity (PGA)
 Quiescent 19 (36.5)
 Mild 23 (44.2)
 Moderate 9 (17.3)
 Missing 1 (1.9)
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PGA = Physician Global Assessment.

Descriptive Analyses for HRQOL

Child-reported HRQOL was normally distributed (skewness = –.63 and kurtosis = .31). Patient age, race, and family income were not associated with child or parent-reported total HRQOL. Disease severity as rated by the PGA and disease type (i.e., CD vs. UC/IC) were also unrelated to HRQOL. Male participants endorsed significantly higher total HRQOL (male M = 143.48, SD = 12.12, female M = 124.66, SD = 18.93, t = –4.14, p < .001, d = 1.18).

Parent-reported HRQOL was normally distributed (skewness = –.20 and kurtosis = –.22) and unrelated to parent age or gender. Disease severity as rated by the PGA and disease type were also unrelated to parent-reported HRQOL. Parents reported significantly lower HRQOL for their children compared to child self-report (t = 3.34, p = .002, d = 0.46). Parents of male participants endorsed significantly higher total HRQOL for their children (male M = 133.17, SD = 16.34, female M = 120.21, SD = 18.21, t = –2.67, p = .01, d = 0.75).

Descriptive Analyses for Emotional Reactivity and Adaptability

Mean scores and observed ranges for emotional reactivity and adaptability are presented in Tables II and III. Patient age, race, disease type (i.e., CD vs. UC/IC) and disease severity as rated on the PGA were unrelated to emotional reactivity and adaptability. Parents reported greater emotional reactivity for their female children compared to males (female M = 30.93, SD = 6.65, male M = 26.87, SD = 6.59, t = 2.20, p = .03, d = 0.61). Parents on average rated their children with IBD as demonstrating typical levels of adaptability based on age and sex norms available (M = 50.27, SD = 9.99). A total of 10 children were rated as demonstrating “at risk” or “clinically significant” deficits in adaptability based on a T-score of ≤ 40. There were no sex differences in adaptability.

Table II.

Partial Correlations Controlling for Child Sex, Means, and SDs of Key Study Variables

Variable 2 3 4 5 M (SD) Observed range
1. HRQOL child-report .60*** −.71*** −.29* .29* 132.98 (18.68) 78–165
2. HRQOL
parent-report		 – −.31* −.34* .47*** 125.94 (18.43) 81–164
3. Disease symptomsa – – .06 .04 10.39 (9.33) 0–40
4. Emotional Reactivity – – – −.37** 29.13 (6.87) 16–46
5. Adaptability – – – – 50.27 (9.99) 24–67
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Note. Possible scores on the HRQOL measure range from 35 to 175 with higher scores representing greater HRQOL. Possible scores on the Emotional Reactivity measure range from 10 to 50 with higher scores representing greater reactivity. Adaptability is displayed as a T-score (M = 50, SD = 10), with higher scores indicating greater functioning. Possible range of patient-reported disease symptoms is 0–50, with higher scores indicating greater severity.

*

p < .05;

**

p < .01;

***

p < .001.

HRQOL= health-related quality of life; M = mean, SD = standard deviation.

a

Patient-reported disease symptoms.

Interscale Correlations

Given significant sex-based differences in ratings of HRQOL, partial correlations controlling for child sex were computed among HRQOL, patient-reported disease symptoms, emotional reactivity, and adaptability (see Table II). Self-reported disease symptoms were negatively associated with HRQOL. Children whose parents rated them as more emotionally reactive and less adaptive reported lower HRQOL. Greater emotional reactivity was associated with lower adaptability. Table II also presents the intercorrelations for parent-reported HRQOL, emotional reactivity, and adaptability. Child-reported disease symptoms were negatively associated with HRQOL. Parents who rated their children as more emotionally reactive reported lower HRQOL. Greater adaptability was associated with greater parent-rated HRQOL.

Regression Analyses

Multiple linear regression analyses were conducted to examine the associations between HRQOL and temperamental characteristics. The final model of child-reported HRQOL was significant and accounted for 73% of the variance. Child sex, disease symptoms, and adaptability emerged as significantly associated factors (Table III). In the model of parent-reported HRQOL, child-reported disease symptoms and adaptability were significantly associated factors. The final model accounted for 43% of the variance in parent-reported HRQOL (Table III).

Table III.

Multiple Regression Analyses Examining the Effects of Demographic, Medical, Emotional Reactivity, and Adaptability Variables on Child-Reported and Parent-Reported HRQOL

Dependent Variable and Predictors B SE B β t F R2 ΔR2
Child-reported HRQOL
 Demographics 17.14**** .26
  Child sex 13.15 2.99 0.35**** 4.39****
 Medical variables 42.71**** .64 .38
   Disease symptoms −1.25 0.16 −0.63**** −8.09****
 Temperamental risk 34.30**** .68 .05
   Emotional reactivity −0.37 0.23 −0.14 −1.58
 Temperamental protective 31.33**** .73 .05
  Adaptability 0.43 0.16 2.80*** 2.80***
Parent-reported HRQOL
 Demographics 7.11*** .13
  Child sex 8.17 4.25 0.22 1.92*
 Medical variables 6.44*** .21 .08
  Disease symptoms −0.59 0.22 −0.30 −2.70***
 Temperamental risk 6.82*** .30 .09
  Emotional reactivity −0.43 0.33 −0.16 −1.29
 Temperamental protective 9.01**** .43 .14
  Adaptability 0.74 0.22 0.40 3.35***
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Note. Italicized variables are dependent variables.

*p < .10,

**p < .05,

***p < .01,

****p < .001.

Discussion

The current study extends previous work that has primarily focused on risk factors associated with poorer HRQOL in pediatric IBD patients (Gray et al., 2011; Reed-Knight et al., 2016) by examining temperamental characteristics including the protective factor of adaptability. In correlation analyses, HRQOL was rated lower by children and their parents as self-reported disease symptoms and parent-rated emotional reactivity increased. Conversely, total HRQOL was higher for children with higher parent-ratings of adaptability.

Consistent with our hypotheses, higher levels of adaptability along with male sex and lower child-reported disease symptoms were associated with higher child-reported HRQOL in multiple regression analyses. Higher ratings of parent-reported HRQOL were significantly associated with fewer self-reported disease symptoms and greater adaptability; however, male sex fell out of the final parent-report model. We had hypothesized that emotional reactivity would be associated with poorer HRQOL. Although this was found in correlation analyses, in both parent- and child-reported HRQOL regression models, emotional reactivity fell out as a significantly associated factor in the final model. Results suggest that although emotional reactivity was associated with HRQOL at the bivariate level, when examined in a larger risk and protective factors model, self-reported disease symptoms and higher levels of adaptability played a larger role in explaining ratings of HRQOL.

Conceptually, these findings support the notion that attending to temperamental protective factors is valuable for understanding differential outcomes in children (Masten & Barnes, 2018). Although higher self-reported disease symptoms understandably explained a large portion of the variance in HRQOL, especially for child-report, adaptability remained a significantly associated factor in final models. Inclusion of adaptability contributes to a broader understanding of HRQOL in youth with IBD and pushes the field beyond deficit-based models to include consideration of protective constructs. Our findings can begin to inform population-specific models of risk and resilience in pediatric IBD. Specifically, adaptability may be a particularly relevant temperamental protective factor in this population, especially for youth who are newly diagnosed. Findings are consistent with a recent qualitative study in which youth diagnosed with IBD and their parents described a process of acceptance and adjusting to a “new normal” by using optimism and other positive coping strategies (Easterlin et al., 2020). The current study extends these findings to a newly diagnosed sample, indicating that adaptability in the emotionally challenging and potentially overwhelming period after diagnosis is critical for child well-being (Maddux et al., 2013). The proclivity to flexibly adjust in the context of adversity may help determine better psychosocial outcomes for youth diagnosed with IBD.

Emotional reactivity did not remain significantly associated with HRQOL in our final regression models, which was inconsistent with expectations. This could be due to the shared variance between emotional reactivity and adaptability, thereby limiting the amount of variability to be explained by each factor in the final models. It would be valuable to analyze the direct and indirect effects of these variables on HRQOL to explicate these relationships. Additionally, although the cumulative risk for poor HRQOL has been studied in pediatric IBD (Gumidyala & Greenley, 2014), the relative contribution of temperamental characteristics are not understood. We invite researchers to consider other potentially relevant temperamental characteristics based on research with other pediatric populations (e.g., self-regulation, effortful control, ego resilience; Harper et al., 2014) for understanding what confers risk, as well as adaptation, in pediatric IBD. Disease severity as measured by the PGA was not related to HRQOL in the current study. This is consistent with a body of literature demonstrating that self-reported disease symptoms show greater associations with emotional/behavioral functioning in pediatric IBD compared to physician-rated measures of disease (Reed-Knight et al., 2017).

In the current sample of youth newly diagnosed with IBD, male participants and their parents endorsed higher HRQOL compared to females. Previous research has found mixed results with regards to sex differences in HRQOL, with one study suggesting poorer QOL among males (De Boer et al., 2005) and another suggesting poorer QOL among females with IBD (van der Zaag-Loonen et al., 2004). Conversely, additional research has failed to find sex differences in ratings of HRQOL for pediatric patients with IBD (Gray et al., 2015). Inconsistencies in existing research on sex-based differences in HRQOL make conclusions difficult to draw but suggest that sex is an important variable to include in analyses of HRQOL in pediatric IBD. Additional research is needed to better understand how sex may impact ratings of HRQOL across the course of diagnosis and development. Given the impact of IBD on growth and body image (Cushman et al., 2020b) it is possible that sex-based differences vary depending on patient age and time since diagnosis.

Limitations

Despite the strengths of the study including examination of temperamental characteristics in relation to HRQOL in a newly diagnosed sample, there are limitations to consider. The sample size was relatively small, which limited ability to detect effects smaller than medium-large to large. All participants were recruited from a single gastroenterology center, which may limit generalizability to patients in other geographic locations. The sample utilized in the current study was primarily Caucasian (77%) and had relatively high annual family incomes, with 60% of families reporting an income of over $75,000. The lack of racial and economic diversity in our sample may limit the generalizability of findings. Demographic information on families who refused participation was not collected and therefore, differences between families who did and did not participate are unknown. Information about previous medical and psychiatric diagnoses is unknown, so it is unclear how findings may generalize to youth with co-occurring medical or psychiatric conditions. The use of cross-sectional data limits conclusions regarding the directionality of effects among variables and intra-rater bias may partially account for strong associations observed (e.g., child-reported disease symptoms and HRQOL). Finally, the assessment methodology used to measure risk and protective factors impacted results. Adaptability and emotional reactivity were both measured using only parent-report on single rating scales. Future research should examine children’s perceptions of their emotional reactivity and abilities to respond flexibly when facing a new situation as well as consider behavioral observations during experimental tasks to measure these temperamental constructs. In addition, we acknowledge that the temperamental variables we included in our study could be inverted so that the valence of being a risk or protective factor would be reversed (e.g., low adaptability as a risk factor). Future studies should take this into consideration during conceptualization.

As research grows on protective factors associated with positive adaptation in pediatric IBD, we look forward to the more extensive and nuanced measurement of protective factors garnering interest in the adult IBD literature including trait resilience, optimism, and self-regulation (Feingold et al., 2019; Keefer, 2018). Studies should work to incorporate measurement of positive adaptation into assessment batteries to complement more traditionally measured vulnerabilities and poor outcomes. By systematically measuring both risk and protective factors, we will be better able to describe factors associated with positive adaptation or even thriving despite diagnosis with IBD. As higher adaptability was associated with improved HRQOL in the current study, future intervention research may examine whether adaptability can be taught and whether changes following intervention are associated with improvements in HRQOL. Interventions designed to teach skills of self-regulation may be applicable to high emotional reactivity, though future research is needed to determine whether these skills confer a benefit to patients’ HRQOL in pediatric IBD. In adults with IBD, self-management training has been associated with improvements in quality of life (Kennedy et al., 2004), and in adolescents, a positive outlook is related to a better quality of life (Nicholas et al., 2007). Given the lifetime of disease facing pediatric patients with IBD, the potential to focus on protective factors associated with positive adaptation and coping offers excitement and novel avenues for intervention.

Funding

This research was supported by the National Center for Advancing Translational Science (NCATS) of the National Institutes of Health under Award Number UL1TR002378 and KL2TR002381 and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health under Award Number K23DK122115 awarded to the final author.

Conflicts of interest: None declared.

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