Examining Risk Factors of Health-Related Quality of Life Impairments Among Adolescents with Inflammatory Bowel Disease

References

• McDonald RP, Ho MH. Principles and practice in reporting structural equation analyses. Psychol Meth. 2002;7(1):64–82. doi:10.1037/1082-989X.7.1.64.
   PubMed Web of Science ®Google Scholar
• Banez GA, Cunningham CL. Abdominal Pain-Related Gastrointestinal Disorders: Irritable Bowel Syndrome and Inflammatory Bowel Disease. Washington: American Psychological Association; 2009.
   Google Scholar
• Kappelman MD, Rifas–Shiman SL, Porter CQ, et al. Direct health care costs of Crohn's disease and ulcerative colitis in US children and adults. Gastroenterology. 2008;135(6):1907–1913. doi:10.1053/j.gastro.2008.09.012.
   PubMed Web of Science ®Google Scholar
• Chang S, Malter L, Hudesman D. Disease monitoring in IBD. World J Gastroenterol. 2015;21(40):11246–11259.
   PubMed Web of Science ®Google Scholar
• Munkholm P, Langholz E, Davidsen M, et al. Disease activity courses in a regional cohort of Crohn's disease patients. Scandinavian J Gastroenterol. 1995;30(7):699–706. doi:10.3109/00365529509096316.
   PubMed Web of Science ®Google Scholar
• Gumidyala AP, Greenley RN. Correlates of health-related quality of life in pediatric inflammatory bowel disease: A cumulative risk model approach. J Pediatr Psychol. 2014;39(1):55–64. doi:10.1093/jpepsy/jst073.
   PubMed Web of Science ®Google Scholar
• Greenley RN, Hommel KA, Nebel J, et al. A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. J Pediatr Psychol. 2010;35(8):857–869. doi:10.1093/jpepsy/jsp120.
   PubMed Web of Science ®Google Scholar
• Jelenova D, Prasko J, Ociskova M, et al. Quality of life in adolescents with inflammatory bowel disease and their parents–comparison with healthy controls. Neuro Endocrinol Lett. 2015;36(8):787–792.
   PubMed Web of Science ®Google Scholar
• Kim S, Park S, Kang Y, et al. Medical staff tend to underestimate the quality of life in children and adolescents with inflammatory bowel disease. Acta Paediatr. 2019;108(1):138–142. doi:10.1111/apa.14498.
   PubMed Web of Science ®Google Scholar
• Zaag-Loonen HJ, Grootenhuis MA, Last BF, et al. Coping strategies and quality of life of adolescents with inflammatory bowel disease. Qual Life Res. 2004;13(5):1011–1019. doi:10.1023/B:QURE.0000025598.89003.0c.
   PubMed Web of Science ®Google Scholar
• Akobeng AK, Miller V, Firth D, et al. Quality of life of parents and siblings of children with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 1999;28(Supplement):S40–S42. doi:10.1097/00005176-199904001-00007.
   PubMedGoogle Scholar
• Otley AR, Griffiths AM, Hale S, et al. Health-related quality of life in the first year after a diagnosis of pediatric inflammatory bowel disease. Inflamm Bowel Diseases. 2006;12(8):684–691. doi:10.1097/00054725-200608000-00003.
   PubMed Web of Science ®Google Scholar
• Loonen H, Grootenhuis M, Last B, et al. Quality of life in paediatric inflammatory bowel disease measured by a generic and a disease‐specific questionnaire. Acta Paediatrica. 2007;91(3):348–354. doi:10.1111/j.1651-2227.2002.tb01727.x.
   Google Scholar
• Engelmann G, Erhard D, Petersen M, et al. Health-related quality of life in adolescents with inflammatory bowel disease depends on disease activity and psychiatric comorbidity. Child Psychiatry Hum Dev. 2015;46(2):300–307. doi:10.1007/s10578-014-0471-5.
   PubMed Web of Science ®Google Scholar
• Grey M, Cameron ME, Thurber FW. Coping and adaptation in children with diabetes. Nurs Res. 1991;40(3):144–148. doi:10.1097/00006199-199105000-00004.
   Web of Science ®Google Scholar
• Pollock SE. Human responses to chronic illness: physiologic and psychosocial adaptation. Nurs Res. 1986;36(2):90–97. doi:10.1097/00006199-198603000-00008.
   Google Scholar
• Whittemore R, Jaser S, Guo J, et al. A conceptual model of childhood adaptation to type 1 diabetes. Nurs Outlook. 2010;58(5):242–251. doi:10.1016/j.outlook.2010.05.001.
   PubMed Web of Science ®Google Scholar
• Modi AC, Marciel KK, Slater SK, et al. The influence of parental supervision on medical adherence in adolescents with cystic fibrosis: developmental shifts from pre to late adolescence. Children's Health Care. 2008;37(1):78–92. doi:10.1080/02739610701766925.
   Web of Science ®Google Scholar
• Casellas F, Arenas JI, Baudet JS, et al. Impairment of health-related quality of life in patients with inflammatory bowel disease: a Spanish multicenter study. Inflamm Bowel Dis. 2005;11(5):488–496. doi:10.1097/01.MIB.0000159661.55028.56.
   PubMed Web of Science ®Google Scholar
• Han SW, McColl E, Barton JR, et al. Predictors of quality of life in ulcerative colitis. The importance of symptoms and illness representations. Inflamm Bowel Dis. 2005;11(1):24–34. doi:10.1097/00054725-200501000-00004.
   PubMed Web of Science ®Google Scholar
• Bernklev T, Jahnsen J, Aadland E, et al. Health-related quality of life in patients with inflammatory bowel disease five years after the initial diagnosis. Scandinavian J Gastroenterol. 2004;39(4):365–373. doi:10.1080/00365520310008386.
   PubMed Web of Science ®Google Scholar
• Blanco BL, Moreno-Jimenez B, Múgica JD, &, et al. Relationship between socio-demographic and clinical variables, and health-related quality of life in patients with IBD. Revista Espanola de Enfermedades Digestivas. 2005;97(12):887.
   PubMedGoogle Scholar
• Franks P, Fiscella K. Reducing disparities downstream: prospects and challenges. J Gen Intern Med. 2008;23(5):672–677. doi:10.1007/s11606-008-0509-0.
   PubMed Web of Science ®Google Scholar
• Duncan RP, Seccombe K, Amey C. Changes in health insurance coverage within rural and urban environments—1977 to 1987. 1995;11(3):169–176. doi:10.1111/j.1748-0361.1995.tb00412.x.
   Google Scholar
• Miller JE. The effects of race/ethnicity and income on early childhood asthma prevalence and health care use. Am J Public Health. 2000;90(3):428.
   PubMed Web of Science ®Google Scholar
• Starfield B, Shapiro S, Weiss J, et al. Race, family income, and low birth weight. Am J Epidemiol. 1991;134(10):1167–1174. doi:10.1093/oxfordjournals.aje.a116020.
   PubMed Web of Science ®Google Scholar
• Straus WL, Eisen GM, Sandler RS, et al. Crohn’s disease: does race matter?. Am J Gastroenterol. 2000;95(2):479–483. doi:10.1111/j.1572-0241.2000.t01-1-01531.x.
   PubMed Web of Science ®Google Scholar
• Burke PM, Neigut D, Kocoshis S, et al. Correlates of depression in new onset pediatric inflammatory bowel disease. Child Psych Hum Dev. 1994;24(4):275–283. doi:10.1007/BF02353203.
   PubMed Web of Science ®Google Scholar
• Mackner LM, Crandall WV. Long-term psychosocial outcomes reported by children and adolescents with inflammatory bowel disease. Am J Gastroenterol. 2005;100(6):1386. doi:10.1111/j.1572-0241.2005.41428.x.
   PubMed Web of Science ®Google Scholar
• Szajnberg N, Krall V, Davis P, et al. Psychopathology and relationship measures in children with inflammatory bowel disease and their parents. Child Psych Hum Dev. 1993;23(3):215–232. doi:10.1007/BF00707151.
   PubMed Web of Science ®Google Scholar
• Petrak F, Hardt J, Clement T, et al. Impaired health-related quality of life in inflammatory bowel diseases psychosocial impact and coping styles in a National German sample. Scandinavian J Gastroenterol. 2001;36(4):375–382. doi:10.1080/003655201300051171.
   PubMed Web of Science ®Google Scholar
• Mussell M, Böcker U, Nagel N, et al. Predictors of disease-related concerns and other aspects of health-related quality of life in outpatients with inflammatory bowel disease. European J Gastroenterol Hepatol. 2004;16(12):1273–1280. doi:10.1097/00042737-200412000-00007.
   PubMed Web of Science ®Google Scholar
• Loreaux KL, Gray WN, Denson LA, et al. Health-related quality of life in adolescents with inflammatory bowel disease: the relation of parent and adolescent depressive symptoms. Children's Health Care. 2015;44(2):119–135. doi:10.1080/02739615.2014.912943.
   Web of Science ®Google Scholar
• Logan D, Zelikovsky N, Labay L, &, et al. The illness management survey: identifying adolescents' perceptions of barriers to adherence. J Pediatr Psychol. 2003;28(6):383–392. doi:10.1093/jpepsy/jsg028.
   PubMed Web of Science ®Google Scholar
• Rapoff MA, Barnard MU. Compliance with pediatric medical regimen. Patient Compl Med Pract Clin Trial. 1991:73–98.
   Google Scholar
• Gray WN, Denson LA, Baldassano RN, &, et al. Treatment adherence in adolescents with inflammatory bowel disease: the collective impact of barriers to adherence and anxiety/depressive symptoms. J Pediatr Psychol. 2012;37(3):282–291. doi:10.1093/jpepsy/jsr092.
   PubMed Web of Science ®Google Scholar
• Hommel KA, Davis CM, Baldassano RN. Medication adherence and quality of life in pediatric inflammatory bowel disease. J Pediatr Psychol. 2008;33(8):867–874. doi:10.1093/jpepsy/jsn022.
   PubMed Web of Science ®Google Scholar
• Reed-Knight B, McCormick M, Lewis JD, &, et al. Participation and attrition in a coping skills intervention for adolescent girls with inflammatory bowel disease. J Clin Psychol Med Settings. 2012;19(2):188–196. doi:10.1007/s10880-011-9269-9.
   PubMed Web of Science ®Google Scholar
• Zelikovsky N, Schast AP. Eliciting accurate reports of adherence in a clinical interview: development of the medical adherence measure. Pediatr Nurs. 2008;34(2):141–147.
   PubMedGoogle Scholar
• Lewin AB, LaGreca AM, Geffken GR, et al. Validity and reliability of an adolescent and parent rating scale of type 1 diabetes adherence behaviors: the self-care inventory (SCI). J Pediatr Psychol. 2009;34(9):999–1007. doi:10.1093/jpepsy/jsp032.
   PubMed Web of Science ®Google Scholar
• Gardner W, Murphy M, Childs G, et al. The PSC-17: A brief pediatric symptom checklist with psychosocial problem subscales. A report from PROS and ASPN. Ambulatory Child Health. 1999;5(3):225–236.
   Google Scholar
• Varni JW, Franciosi JP, Shulman RJ, et al. PedsQL gastrointestinal symptoms scales and gastrointestinal worry scales in pediatric patients with inflammatory bowel disease in comparison with healthy controls. Inflamm Bowel Dis. 2015;21(5):1115–1124. doi:10.1097/MIB.0000000000000351.
   PubMed Web of Science ®Google Scholar
• Cole DA, Ciesla JA, Steiger JH. The insidious effects of failing to include design-driven correlated residuals in latent-variable covariance structure analysis. Psychol Meth. 2007;12(4):381. doi:10.1037/1082-989X.12.4.381.
   PubMed Web of Science ®Google Scholar
• Bollen KA, Long JS. Testing Structural Equation Models. Vol. 154. California: Sage; 1993.
   Google Scholar
• Steiger JH. A note on multiple sample extensions of the RMSEA fit index. Struct Equat Model. 1998;5(4):411–419.
   Web of Science ®Google Scholar
• Bentler PM. Comparative fit indexes in structural models. Psychol Bulletin. 1990;107(2):238–246. doi:10.1037/0033-2909.107.2.238.
   PubMed Web of Science ®Google Scholar
• Boomsma A. Reporting analyses of covariance structures. Struct Equat Modelin. 2000;7(3):461–483. doi:10.1207/S15328007SEM0703_6.
   Web of Science ®Google Scholar
• Hu LT, Bentler PM. Cutoff criteria for fit indices in covariance structure analysis: conventional criteria versus new alternative. Struct Equat Model. 1999;6(1):1–55. doi:10.1080/10705519909540118.
   Web of Science ®Google Scholar
• Muthén LK, Muthén BO. Mplus User's Guide (Eight Edition). Los Angeles, CA: Greek University; 1998–2018.
   Google Scholar
• Bentler PM, Yuan KH. Structural equation modeling with small samples: test statistic. Multivariate Behav Res. 1999;34(2):181–197. doi:10.1207/S15327906Mb340203.
   PubMed Web of Science ®Google Scholar
• Graham JW, Olchowski AE, Gilreath TD. How many imputations are really needed? Some practical clarifications of multiple imputation theory. Prev Sci. 2007;8(3):206–213. doi:10.1007/s11121-007-0070-9.
   PubMed Web of Science ®Google Scholar
• Szigethy E, Levy-Warren A, Whitton S, et al. Depressive symptoms and inflammatory bowel disease in children and adolescents: a cross-sectional study. J Pediatr Gastroenterol Nutr. 2004;39(4):395–403. doi:10.1097/00005176-200410000-00017.
   PubMed Web of Science ®Google Scholar
• De Boer M, Grootenhuis M, Derkx B, &, et al. Health-related quality of life and psychosocial functioning of adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2005;11(4):400–406. doi:10.1097/01.MIB.0000164024.10848.0a.
   PubMed Web of Science ®Google Scholar
• Kennard BD, Stewart SM, Olvera R, et al. Nonadherence in adolescent oncology patients: preliminary data on psychological risk factors and relationships to outcome. J Clin Psychol Med Sett. 2004;11(1):31–39. doi:10.1023/B:JOCS.0000016267.21912.74.
   Web of Science ®Google Scholar
• Matsui DM. Promoting adherence to medical treatment in chronic childhood illness: concepts, methods, and interventions. Children’s Adher Medication Treat. 2000:135–152.
   Google Scholar
• Murphy DA, Wilson CM, Durako SJ, et al. Antiretroviral medication adherence among the REACH HIV-infected adolescent cohort in the USA. AIDS Care. 2001;13(1):27–40. doi:10.1080/09540120020018161.
   PubMed Web of Science ®Google Scholar
• Schuman SL, Graef DM, Janicke DM, et al. An exploration of family problem-solving and affective involvement as moderators between disease severity and depressive symptoms in adolescents with inflammatory bowel disease. J Clin Psychol Med Settings. 2013;20(4):488–496. doi:10.1007/s10880-013-9368-x.
   PubMed Web of Science ®Google Scholar
• Rapoff MA. Adherence to Pediatric Medical Regimens. Germany: Springer Science & Business Media. 2009.
   Google Scholar
• Gray WN, Denson LA, Baldassano RN, et al. Disease activity, behavioral dysfunction, and health-related quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis. 2010;17(7):1581–1586. doi:10.1002/ibd.21520.
   PubMed Web of Science ®Google Scholar
• MacPhee M, Hoffenberg EJ, Feranchak A. Quality of life factors in adolescent inflammatory bowel disease. Inflamm Bowel Dis. 1998;4(1):6–11. doi:10.1097/00054725-199802000-00002.
   PubMed Web of Science ®Google Scholar
• Schurman JV, Cushing CC, Carpenter E, Christenson K. Volitional and accidental nonadherence to pediatric inflammatory bowel disease treatment plans: initial investigation of associations with quality of life and disease activity. J Pediatr Psychol. 2010;36(1):116–125. doi:10.1093/jpepsy/jsq046.
   PubMed Web of Science ®Google Scholar
• Benchimol EI, To T, Griffiths AM, et al. Outcomes of pediatric inflammatory bowel disease: socioeconomic status disparity in a universal-access healthcare system. J Pediatr. 2011;158(6):960–967. doi:10.1016/j.jpeds.2010.11.039.
   PubMed Web of Science ®Google Scholar
• Goodhand JR, Kamperidis N, Sirwan B, et al. Factors associated with thiopurine non‐adherence in patients with inflammatory bowel disease. Aliment Pharmacol Ther. 2013;38(9):1097–1108. doi:10.1111/apt.12476.
   PubMed Web of Science ®Google Scholar
• Nahon S, Lahmek P, Durance C, et al. Risk factors of anxiety and depression in inflammatory bowel disease. Inflamm Bowel Dis. 2012;18(11):2086–2091. doi:10.1002/ibd.22888.
   PubMed Web of Science ®Google Scholar
• Reed-Knight B, Lewis JD, Blount RL. Association of disease, adolescent, and family factors with medication adherence in pediatric inflammatory bowel disease. J Pediatr Psychol. 2011;36(3):308–317. doi:10.1093/jpepsy/jsq076.
   PubMed Web of Science ®Google Scholar
• Severs M, Mangen MJ, Van der Valk ME, et al. Smoking is associated with higher disease-related costs and lower health-related quality of life in inflammatory bowel disease. J Crohn's and Colitis. 2017;11(3):342–352.
   PubMed Web of Science ®Google Scholar
• Guthrie E, Jackson J, Shaffer J, et al. Psychological disorder and severity of inflammatory bowel disease predict health-related quality of life in ulcerative colitis and Crohn's disease. Am J Gastroenterol. 2002;97(8):1994. doi:10.1111/j.1572-0241.2002.05842.x.
   PubMed Web of Science ®Google Scholar
• Joy GJ, Cross RK, Flasar MH. Race and inflammatory bowel disease. Pract Gastroenterol. 2009;48:23–33.
   Google Scholar
• Elster A, Jarosik J, VanGeest J, et al. Racial and ethnic disparities in healthcare for adolescents: a systematic review of the literature. Arch Pediatr Adolesc Med. 2003;157(9):867–874. doi:10.1001/archpedi.157.9.867.
   PubMed Web of Science ®Google Scholar
• Flores G. Technical report—racial and ethnic disparities in the health and healthcare of children. Pediatrics. 2010:2010. doi:10.1542/peds.2010-0188.
   Web of Science ®Google Scholar
• Wallander JL, Fradkin C, Chien AT, et al. Racial/ethnic disparities in health-related quality of life and health in children are largely mediated by family contextual differences. Acad Pediatr. 2012;12(6):532–538. doi:10.1016/j.acap.2012.04.005.
   PubMed Web of Science ®Google Scholar
• Williams DR, Lavizzo-Mourey R, Warren RC. The concept of race and health status in America. Public Health Rep. 1994;109(1):26.
   PubMed Web of Science ®Google Scholar
• Rybak TM, Ali JS, Berlin KS, et al. Patterns of family functioning and diabetes-specific conflict in relation to glycemic control and health-related quality of life among youth with type 1 diabetes. J Pediatr Psychol. 2016;42(1):40–51.
   Web of Science ®Google Scholar
• Holmbeck GN, Li ST, Schurman JV, et al. Collecting and managing multisource and multimethod data in studies of pediatric populations. J Pediatr Psychol. 2002;27(1):5–18. doi:10.1093/jpepsy/27.1.5.
   PubMed Web of Science ®Google Scholar
• Devinsky O, Westbrook L, Cramer J, et al. Risk factors for poor health‐related quality of life in adolescents with epilepsy. Epilepsia. 1999;40(12):1715–1720. doi:10.1111/j.1528-1157.1999.tb01588.x.
   PubMed Web of Science ®Google Scholar
• Jellinek MS, Murphy JM, Little M, et al. Use of the pediatric symptom checklist to screen for psychosocial problems in pediatric primary care: a national feasibility study. Arch Pediatr Adolesc Med. 1999;153(3):254–260. doi:10.1001/archpedi.153.3.254.
   PubMedGoogle Scholar
• Quittner AL, Schechter MS, Rasouliyan L, et al. Impact of socioeconomic status, race, and ethnicity on quality of life in patients with cystic fibrosis in the United States. Chest. 2010;137(3):642–650. doi:10.1378/chest.09-0345.
   PubMed Web of Science ®Google Scholar
• Von Rueden U, Gosch A, Rajmil L, et al. Socioeconomic determinants of health related quality of life in childhood and adolescence: results from a European study. J Epidemiol Comm Health. 2006;60(2):130–135. doi:10.1136/jech.2005.039792.
   PubMed Web of Science ®Google Scholar