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Health-related Quality of Life in Adolescents with Inflammatory Bowel Disease: The Relation of Parent and Adolescent Depressive Symptoms a
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Katherine L. Loreaux B.A. , Wendy N. Gray Ph.D. , Lee A. Denson M.D Ph.D.
& Kevin A. Hommel
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Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center b
Schubert-Martin Inflammatory Bowel Disease Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children’s Hospital Medical Center c
Department of Pediatrics, University of Cincinnati College of Medicine
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Department of Psychology, Auburn University Accepted author version posted online: 25 Sep 2014.
To cite this article: Katherine L. Loreaux B.A., Wendy N. Gray Ph.D., Lee A. Denson M.D & Kevin A. Hommel Ph.D. (2014): Health-related Quality of Life in Adolescents with Inflammatory Bowel Disease: The Relation of Parent and Adolescent Depressive Symptoms, Children's Health Care, DOI: 10.1080/02739615.2014.912943 To link to this article: http://dx.doi.org/10.1080/02739615.2014.912943
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Health-related Quality of Life in Adolescents with Inflammatory Bowel Disease: The Relation of Parent and Adolescent Depressive Symptoms
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Running head: RELATION OF PARENT AND ADOLESCENT DEPRESSIVE SYMPTOMS Katherine L. Loreaux, B.A.1 Cincinnati Children’s Hospital
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Auburn University
Cincinnati Children’s Hospital Kevin A. Hommel Ph.D. 1,3 Cincinnati Children’s Hospital
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3333 Burnet Ave, MLC 7039
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Lee A. Denson, M.D. 2,3
Cincinnati, OH 45229
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E-mail:
[email protected]
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Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center 2 Schubert-Martin Inflammatory Bowel Disease Center, Division of Gastroenterology, Hepatology and Nutrition, Cincinnati Children’s Hospital Medical Center 3 Department of Pediatrics, University of Cincinnati College of Medicine
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Wendy N. Gray, Ph.D. 4
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Department of Psychology, Auburn University
Funding: This work supported by the following grants: R03DK087822, K23 DK079037, and P30 DK 078392 awarded to the last author
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Abstract Adolescents with IBD are at risk for depressive symptoms and lower HRQOL. The association of adolescent and parent depressive symptoms with adolescent HRQOL is examined while
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controlling for disease activity. Adolescents (N=86) and their caregivers completed measures of
depressive symptoms. Adolescents completed an IBD-specific HRQOL measure. Parent depression significantly moderated the relation between adolescent-reported depressive
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relation was only significant among adolescents with parents reporting higher depressive
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symptoms. Adolescent depressive symptoms are associated with lower HRQOL. The presence of parent depressive symptoms intensifies this relation.
Keywords: quality of life, inflammatory bowel disease, depression, adolescents, parents
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Inflammatory bowel disease (IBD) is a chronic condition characterized by inflammation in the gastrointestinal tract leading to unpredictable episodes of disease activity (e.g., abdominal
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pain, bloody stools, diarrhea, malnutrition, weight loss, fatigue) and remission (Szigethy,
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McLafferty, & Goyal, 2010) The estimated prevalence rate of pediatric IBD is 71 out of 100,000 (Kappelman et al., 2007), though the rate of pediatric Crohn’s disease has increased over the past few decades (Griffiths, 2004). Patients with IBD must follow an intensive treatment that may
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symptoms and HRQOL. HRQOL decreased as adolescent depressive symptoms increased. This
include steroids and immunomodulators, dietary restrictions, and in severe cases, surgery (Szigethy et al., 2010). Twenty-five percent of IBD diagnoses occur in childhood or adolescence (Griffiths, 2004), a time in which the unpredictable, and potentially embarrassing, nature of IBD symptoms can significantly interfere with quality of life and overall functioning.
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IBD is not only associated with physical functioning, but also emotional and social functioning (Greenley et al., 2010). Health-related quality of life (HRQOL), which is a subjective assessment of how a chronic illness affects all areas of a patient’s life, has become an important construct in
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the treatment of pediatric IBD. Previous studies have found that pediatric patients diagnosed
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with IBD report significantly lower overall HRQOL compared to their healthy peers (De Boer,
Grootenhuis, Derkx, & Last, 2005; Engstrom, 1999; Greenley et al., 2010; Haapamaki, Roine,
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Greenley, 2010; Marcus et al., 2009). Given the increased attention and emphasis on this
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patient-reported outcome, it is important to examine the factors that influence patient HRQOL (Sullivan, 2003).
One factor may be depression. Adolescents with IBD are at greater risk for depression. When compared to healthy peers, youth with IBD are 4.56 times more likely to have clinically
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significant depressive symptoms (Mackner & Crandall, 2006). Using the Child Depression
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Inventory - a widely used and well-validated measure - 18.5-24.5% of adolescents with IBD have clinically significant depressive symptoms (Hommel, Davis, & Baldassano, 2008; Szigethy
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et al., 2004).
Our understanding of factors contributing to higher rates of depression and lower quality
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Sintonen, & Kolho, 2011; Herzer, Denson, Baldassano, & Hommel, 2011a; Kunz, Hommel, &
of life in youth with IBD is limited. However, these two constructs are related. Youth with higher rates of depressive symptoms tend to report lower HRQOL (Gray, Denson, Baldassano, & Hommel, 2011; Herzer, Denson, Baldassano, & Hommel, 2011b). What is not known, however, is under what circumstances adolescent depressive symptoms have the most associations with
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HRQOL.
Obtaining a better understanding of the link between adolescent depression and
HRQOL can play a crucial role in our ability to design interventions to improve HRQOL in pediatric IBD.
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Environmental factors, such as parent depression, may amplify the relation between adolescent
depressive symptoms and HRQOL. According to Thompson and colleagues’ Transactional Stress and Coping Model of Adjustment to Chronic Illness, (Thompson, Gil, Burbach, Keith, &
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1992a, 1992b), a bidirectional relation exists between a parent’s and adolescent’s psychological
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health and their adaptation to a chronic illness. Although the association of parent depression with adolescent HRQOL has not been examined in IBD, this relation has been documented in other pediatric chronic illness groups such as type 1 diabetes, epilepsy, and asthma (Ferro, Avison, Campbell, & Speechley, 2011; Jaser, Whittemore, Ambrosino, Lindemann, & Grey,
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2008; Pak & Allen, 2012). Many of these studies, however, focus on children rather than
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adolescents given that the onset of these illnesses occurs at a younger age as compared to the onset of IBD, which typically peaks between ages 15 through 30 (Centers for Disease Control
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and Prevention, 2011). Additionally, unlike many of these illnesses, IBD symptoms are highly unpredictable. This unique disease characteristic may differentially affect how parent depression and HRQOL relate to one another.
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Kinney, 1993a, 1993b; Thompson & Gustafson, 1996; Thompson, Gustafson, Hamlett, & Spock,
When parent depression is examined in pediatric IBD, over half of mothers report a lifetime history of depression (Burke, Kocoshis, et al., 1994), and parents whose adolescents with IBD are depressed are more likely to have a history of depression when compared to parents of
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adolescents with IBD who are not depressed (Burke, Neigut, Kocoshis, Chandra, & Sauer, 1994). It is therefore plausible that the combination of adolescent and parent depressive symptoms may further increase the risk for lower HRQOL in adolescents with IBD. However,
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this has not yet been examined in pediatric IBD. The current study addresses this gap in the pediatric IBD literature by examining the association of parent depression with the relation between adolescent depression and HRQOL.
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youth with IBD, as further addressed in the discussion. Parent depressive symptoms were
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hypothesized to moderate the relation between adolescent depressive symptoms and HRQOL so that HRQOL would be lowest among youth with elevated depressive symptoms and whose
Methods
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Procedures
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parents also reported elevated depressive symptoms.
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Data were pooled from baseline assessments of three independent adherence intervention
studies conducted in the Midwestern United States. All studies were approved by the governing
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Improved understanding of this association could guide work focused on maximizing HRQOL in
institutional review board. Eligible participants were identified via chart review prior to being approached for study participation. Recruitment occurred during regularly scheduled IBD clinic appointments, infliximab infusions, or via telephone. Families expressing interest in the study were scheduled for a baseline visit to provide informed consent/assent and complete study
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measures. A total of 77 families completed the study measures in person; 9 families completed the study measures at home. Table 1 lists study-specific eligibility criteria. See Table 2 for recruitment information. Recruitment rates varied from 41.38% to
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68.57% across the three studies. Though lower compared to cross-sectional studies in pediatric IBD, our recruitment rates are higher than previously reported rates in longitudinal pediatric IBD research (Engstrom, 1999; Kunz, Greenley, & Howard, 2011; Reed-Knight, Lewis, & Blount,
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participated in two or more of the three studies, so only data from the first study that these
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families participated in were included in the analysis as these data were collected prior to receiving any intervention. The final sample consisted of 86 adolescents with IBD and their
Measures
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parents.
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The following measures were completed by adolescents and their parents prior to
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participating in study interventions:
Demographics. Parents provided information on family sociodemographics (e.g., parent
marital status, education, work status, household income, and number of individuals living in the
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2010; Tojek, Lumley, Corlis, Ondersma, & Tolia, 2002, De Boer et al., 2005). Three families
home) via a questionnaire created for the study. Health-related Quality of Life. Adolescents completed the IMPACT-III (Otley et al.,
2002), a 35-item measure of health-related quality of life in children and adolescents (ages 9 to 17) with IBD. For each item, adolescents used a five-point Likert scale to indicate how much
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different aspects of their health are bothersome. Although descriptors vary by question, the higher HRQOL anchors are presented on the left and the lower HRQOL anchors on the right. In addition to a total HRQOL score, the IMPACT-III also provides domain-specific HRQOL scores
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in the areas of general well-being, emotional functioning, social functioning, and body image.
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The total score was used in the current study. Possible total scores range from 35 to 175, with higher scores denoting better quality of life there are no formal clinical cut-offs. The IMPACT-
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Internal consistency for the current sample was excellent (α = .94).
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Adolescent Depression. Adolescent depression was measured using the Behavior Assessment Scale for Children, second edition (BASC-2) (Reynolds & Kamphaus, 2004). This well-validated measure of adolescent behavioral and emotional functioning asks respondents to indicate the frequency of a thought or a behavior using a four-point Likert scale ranging from The depression sub-scale was used in the current study.
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“Never” to “Almost Always”.
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Responses are computer scored and compared to age and gender-normed data to generate Tscores. T-scores between 60 and 69 fall into the “at-risk” range and 70 and above fall into the
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“clinically significant” range. The BASC-2 has demonstrated high internal consistency (α = .83 - .88) (Reynolds & Kamphaus, 2004).
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III demonstrates acceptable to excellent internal consistency (α = .63 – .94) (Perrin et al., 2008).
Parent Depression. Parent depressive symptoms were assessed using the Brief Symptom
Inventory (BSI) (Derogatis, 1993). This 53-item adult self-report measure assesses the severity of various psychological symptoms (e.g., depression, anxiety, somatization). For each item, respondents rate their distress level using a five-point Likert scale ranging from 0 (Not at all) to 4
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(Extremely). The BSI yields scores across nine subscales and three global indices. For this study, the depression subscale was used. T-scores were calculated based off of the raw scores. The BSI demonstrates very good internal consistency (α = .71 – 85), and high test-retest reliability (r
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= .68 - .91) (Derogatis, 1993). The current sample’s internal consistency for the BSI depression
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subscale was excellent (α = .94).
Disease Activity. Disease activity information was collected at the same time as other
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disease activity in adolescents diagnosed with ulcerative colitis and indeterminate colitis and the
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Partial Harvey-Bradshaw Index (PHBI) was used for those diagnosed with Crohn’s disease (Harvey & Bradshaw, 1980; Turner et al., 2007). The PUCAI is comprised of six questions focused on various aspects of disease activity (e.g. consistency and frequency of stools, activity level, abdominal pain) occurring within the past two days. The answers for each question are
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summed (range of scores 0 – 85), with higher scores reflecting greater disease activity. The
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PUCAI total score has excellent internal consistency (ICC = .95, 95% CI: 0.93-0.97) (Turner et al., 2007). The PHBI focuses on three aspects of disease activity (i.e. general well-being,
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abdominal pain, and number of liquid stools) over the past 24 hours. Each answer is summed to obtain the final score (range = 0 – 12). Higher scores on the PHBI reflect more disease activity. The PHBI demonstrates excellent concurrent validity (r = 0.93, p
