Disease-Related Distress in Pediatric IBD: Development and Validation of the Crohn’s and Colitis Distress Scale

Abstract

Objective:

Inflammatory bowel disease (IBD) is characterized by inflammation in the gastrointestinal tract with painful and distressing symptoms periods of exacerbations and remissions. Youth with IBD are at increased risk of experiencing challenges across psychosocial functioning. Mental health concerns (i.e., anxiety, depression) are commonly assessed in youth with IBD, but measures used to assess psychopathology may not fully capture emotional distress unique to living with IBD. There remains no well-validated measure of IBD-specific distress in pediatrics.

Method:

The Crohn’s and Colitis Distress Scale (CCDS), a newly developed measure of pediatric IBD-distress, was completed by 120 youth with IBD during routine care. The psychometric properties of the measure were examined.

Results:

The Cronbach’s alpha for the full scale was .94 and subscale internal consistency ranged from .66 to .90. Longer time since diagnosis and longer time since last flare was associated with lower IBD-distress. Further, greater IBD-distress was reported in girls with a diagnosis of ulcerative colitis, currently symptomatic, or currently flaring respective to their counterparts. Though moderately to largely correlated (.30 < r < .73), IBD-distress was found to be a distinct construct from global anxiety and depression.

Conclusions:

Data support the use of an instrument specific to IBD-distress, such as the CCDS, to allow for more accurate detection of risk for emotional distress in IBD. Further assessment of the reliability and validity of the measure within larger, more diverse samples is warranted. Such investigation should include assessment of the associations between IBD-distress and treatment engagement and health outcomes.

Implications for Impact Statement

Mental health concerns (e.g., anxiety, depression) are commonly assessed in youth with Inflammatory Bowel Disease (IBD), but the measures used do not fully capture emotional distress that is unique to living with IBD. The Crohn’s and Colitis Distress Scale (CCDS) is a newly developed measure assessing IBD-related emotional distress in youth. Our study found initial evidence for validating the CCDS, we identified 5 factors of IBD-distress, and we found that IBD-distress as a distinct construct from more global anxiety and depression.

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References

American Psychiatric Association . (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.).

Brooks

A. J.

Rowse

Ryder

Peach

E. J.

Corfe

B. M.

, & Lobo

A. J.

(2016). Systematic review: Psychological morbidity in young people with inflammatory bowel disease - risk factors and impacts. Alimentary Pharmacology & Therapeutics, 44(1), 3–15. 10.1111/apt.13645

Crohn’s and Colitis Foundation of America (CCFA) . (2014). The facts about inflammatory bowel diseases.

Dibley

Czuber-Dochan

Woodward

Wade

Bassett

Sturt

Norton

, & Patient and Public Involvement Team . (2018). Development and psychometric properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A new tool to measure disease-specific distress. Inflammatory Bowel Diseases, 24(9), 2068–2077. 10.1093/ibd/izy108

Fegan-Bohm

Minard

C. G.

Anderson

B. J.

Butler

A. M.

Titus

Weissberg-Benchell

, & Hilliard

M. E.

(2020). Diabetes distress and HbA1c in racially/ethnically and socioeconomically diverse youth with type 1 diabetes. Pediatric Diabetes, 21(7), 1362–1369. 10.1111/pedi.13108

Gray

W. N.

Denson

L. A.

Baldassano

R. N.

, & Hommel

K. A.

(2011). Disease activity, behavioral dysfunction, and health-related quality of life in adolescents with inflammatory bowel disease. Inflammatory Bowel Diseases, 17(7), 1581–1586. 10.1002/ibd.21520

Hagger

Hendrieckx

Cameron

Pouwer

Skinner

T. C.

, & Speight

(2018). Diabetes distress is more strongly associated with HbA1c than depressive symptoms in adolescents with type 1 diabetes: Results from Diabetes MILES Youth-Australia. Pediatric Diabetes, 19(4), 840–847. 10.1111/pedi.12641

Harris

M. A.

Paternostro

Stoeckel

Mackay

, & Muir

(2019). P027 The Emotional Experiences of IBD: Are they are depressed or are we missing something? Gastroenterology, 156(3), S19. 10.1053/j.gastro.2019.01.076

Hommel

K. A.

Greenley

R. N.

Maddux

M. H.

Gray

W. N.

, & Mackner

L. M.

(2013). Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. Journal of Pediatric Gastroenterology and Nutrition, 57(2), 250–257. 10.1097/MPG.0b013e3182999b21

10.

Korzenik

(2019). Don’t worry, be happy: psychological interventions in inflammatory bowel disease. Gastroenterology, 156(4), 856–857. 10.1053/j.gastro.2019.02.013

11.

Kroenke

Strine

T. W.

Spitzer

R. L.

Williams

J. B.

Berry

J. T.

, & Mokdad

A. H.

(2009). The PHQ-8 as a measure of current depression in the general population. Journal of Affective Disorders, 114(1–3), 163–173. 10.1016/j.jad.2008.06.026

12.

Morrissey

E. C.

Casey

Dinneen

S. F.

Lowry

, & Byrne

(2020). Diabetes distress in adolescents and young adults living with type 1 diabetes. Canadian Journal of Diabetes, 44(6), 537–540. 10.1016/j.jcjd.2020.03.001

13.

Naliboff

B. D.

Kim

S. E.

Bolus

Bernstein

C. N.

Mayer

E. A.

, & Chang

(2012). Gastrointestinal and psychological mediators of health-related quality of life in IBS and IBD: A structural equation modeling analysis. The American Journal of Gastroenterology, 107(3), 451–459. 10.1038/ajg.2011.377

14.

Polonsky

W. H.

Fisher

Earles

Dudl

R. J.

Lees

Mullan

, & Jackson

R. A.

(2005). Assessing psychosocial distress in diabetes: Development of the diabetes distress scale. Diabetes Care, 28(3), 626–631. 10.2337/diacare.28.3.626

15.

Quittner

A. L.

Goldbeck

Abbott

Duff

Lambrecht

Solé

Tibosch

M. M.

Bergsten Brucefors

Yüksel

Catastini

Blackwell

, & Barker

(2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: Results of The International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090–1097. 10.1136/thoraxjnl-2014-205983

16.

Reigada

L. C.

Moore

M. T.

Martin

C. F.

, & Kappelman

M. D.

(2018). Psychometric evaluation of the IBD-Specific Anxiety Scale: A novel measure of disease-related anxiety for adolescents with IBD. Journal of Pediatric Psychology, 43(4), 413–422. 10.1093/jpepsy/jsx121

17.

Sauer

C. G.

, & Kugathasan

(2009). Pediatric inflammatory bowel disease: Highlighting pediatric differences in IBD. Gastroenterology Clinics of North America, 38(4), 611–628. 10.1016/j.gtc.2009.07.010

18.

Shapiro

J. B.

Vesco

A. T.

Weil

L. E. G.

Evans

M. A.

Hood

K. K.

, & Weissberg-Benchell

(2018). Psychometric properties of the problem areas in diabetes: Teen and parent of teen versions. Journal of Pediatric Psychology, 43(5), 561–571. 10.1093/jpepsy/jsx146

19.

Shih

Cushman

, & Reed

(2021). Temperament and health-related quality of life in newly diagnosed pediatric inflammatory bowel disease. Journal of Pediatric Psychology, 46(4), 404–412. 10.1093/jpepsy/jsaa116

20.

Spitzer

R. L.

Kroenke

Williams

J. B.

, & Löwe

(2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of Internal Medicine, 166(10), 1092–1097. 10.1001/archinte.166.10.1092

21.

Stellway Beard

Beeson

MacKay

Paternostro

Bassett

Lin

, & Harris

(2020). P054 what are they worried about?: Findings from the IBD distress scale. Gastroenterology, 158(3), S111. 10.1053/j.gastro.2019.11.257

22.

Szigethy

Levy-Warren

Whitton

Bousvaros

Gauvreau

Leichtner

A. M.

, & Beardslee

W. R.

(2004). Depressive symptoms and inflammatory bowel disease in children and adolescents: A cross-sectional study. Journal of Pediatric Gastroenterology and Nutrition, 39(4), 395–403. 10.1097/00005176-200410000-00017

23.

van den Brink

Stapersma

Vlug

L. E.

Rizopolous

Bodelier

A. G.

van Wering

Hurkmans

P. C. W. M.

Stuyt

R. J. L.

Hendriks

D. M.

van der Burg

J. A. T.

Utens

E. M. W. J.

, & Escher

J. C.

(2018). Clinical disease activity is associated with anxiety and depressive symptoms in adolescents and young adults with inflammatory bowel disease. Alimentary Pharmacology & Therapeutics, 48(3), 358–369. 10.1111/apt.14832

24.

Walter

J. G.

Kahn

S. A.

Noe

J. D.

Schurman

J. V.

Miller

S. A.

, & Greenley

R. N.

(2016). Feeling fine: Anxiety and depressive symptoms in youth with established IBD. Inflammatory Bowel Diseases, 22(2), 402–408. 10.1097/MIB.0000000000000657

25.

Manne

Treem

W. R.

, & Bennett

(2020). Prevalence of inflammatory bowel disease in pediatric and adult populations: Recent estimates from large national databases in the United States, 2007–2016. Inflammatory Bowel Diseases, 26(4), 619–625.