Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition.
Crohn’s
Embarrassment
IBD
Loneliness
Mental health
Ulcerative colitis
Journal
Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
ISSN: 1573-2649
Titre abrégé: Qual Life Res
Pays: Netherlands
ID NLM: 9210257
Informations de publication
Date de publication:
Feb 2021
Feb 2021
Historique:
accepted:
24
09
2020
pubmed:
1
10
2020
medline:
20
3
2021
entrez:
30
9
2020
Statut:
ppublish
Résumé
Adolescents and young adults (AYA) with Inflammatory Bowel Disease (IBD) report higher depressive symptoms and anxiety compared to healthy controls, with disease severity and abdominal pain being important factors. In the current study, building on what young people had told us in our previous work, we examined whether embarrassment of the condition, social self-efficacy, and friendship quality mediated the relationship between abdominal pain and disease severity, and mental health/well-being. We also included loneliness as a component of well-being. Data on depression, anxiety, loneliness, friendship quality, social self-efficacy, and disease embarrassment were collected from 130 AYA with IBD ages 14-25 years; data on disease severity and abdominal pain were taken from their medical records. Structural Equation Modeling (SEM) was used to test the relationships between the variables. Using SEM, we established that higher IBD disease activity negatively impacted how AYA felt about their friendships and how embarrassed they were about their condition; embarrassment then influenced reports of mental health, including loneliness. Abdominal pain, disease onset, and social self-efficacy directly predicted internalising problems. In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perceived stigma affects those with chronic illness, and those issues should be explored in clinic.
Identifiants
pubmed: 32997335
doi: 10.1007/s11136-020-02653-9
pii: 10.1007/s11136-020-02653-9
pmc: PMC7886765
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
497-506Subventions
Organisme : Crohn's and Colitis UK
ID : SP2017-2
Références
Ashton, J. J., Harden, A., & Beattie, R. M. (2018). Paediatric inflammatory bowel disease: Improving early diagnosis. Archives of Disease in Childhood, 103(4), 307. https://doi.org/10.1136/archdischild-2017-313955 .
doi: 10.1136/archdischild-2017-313955
pubmed: 29175974
Gasparetto, M., & Guariso, G. (2013). Highlights in IBD epidemiology and its natural history in the paediatric age. Gastroenterology Research and Practice, 2013, 1–12. https://doi.org/10.1155/2013/829040 .
doi: 10.1155/2013/829040
Roberts, C. M., Gamwell, K. L., Baudino, M. N., et al. (2019). Youth and parent illness appraisals and adjustment in pediatric inflammatory bowel disease. Journal of Developmental and Physical Disabilities. https://doi.org/10.1007/s10882-019-09678-0 .
doi: 10.1007/s10882-019-09678-0
Nicholas, D. B., Otley, A., Smith, C., Avolio, J., Munk, M., & Griffiths, A. M. (2007). Challenges and strategies of children and adolescents with inflammatory bowel disease: A qualitative examination. Health and Quality of Life Outcomes, 5(1), 28. https://doi.org/10.1186/1477-7525-5-28 .
doi: 10.1186/1477-7525-5-28
pubmed: 17531097
pmcid: 1892542
Ashton, J. J., Cullen, M., Afzal, N. A., Coelho, T., Batra, A., & Beattie, R. M. (2018). Is the incidence of paediatric inflammatory bowel disease still increasing? Archives of Disease in Childhood, 103(11), 1093–1094. https://doi.org/10.1136/archdischild-2018-315038 .
doi: 10.1136/archdischild-2018-315038
pubmed: 29519945
Molodecky, N. A., Soon, I. S., Rabi, D. M., et al. (2012). Increasing incidence and prevalence of the inflammatory bowel diseases with time. Based on Systematic Review. Gastroenterology, 142(1), 46–54.e42. https://doi.org/10.1053/j.gastro.2011.10.001 .
doi: 10.1053/j.gastro.2011.10.001
pubmed: 22001864
Hammer, T., Nielsen, K. R., Munkholm, P., Burisch, J., & Lynge, E. (2016). The faroese IBD study: incidence of inflammatory bowel diseases across 54 years of population-based data. Journal of Crohn’s and Colitis, 10(8), 934–942. https://doi.org/10.1093/ecco-jcc/jjw050 .
doi: 10.1093/ecco-jcc/jjw050
pubmed: 26933031
pmcid: 4962362
Shivananda, S., Lennard-Jones, J., Logan, R., et al. (1996). Incidence of inflammatory bowel disease across Europe: Is there a difference between north and south? Results of the European Collaborative Study on Inflammatory Bowel Disease (EC-IBD). Gut, 39(5), 690–697. https://doi.org/10.1136/gut.39.5.690 .
doi: 10.1136/gut.39.5.690
pubmed: 9014768
pmcid: 1383393
Vegh, Z., Burisch, J., Pedersen, N., et al. (2014). Incidence and initial disease course of inflammatory bowel diseases in 2011 in Europe and Australia: Results of the 2011 ECCO-EpiCom inception cohort. Journal of Crohn’s and Colitis, 8(11), 1506–1515. https://doi.org/10.1016/j.crohns.2014.06.004 .
doi: 10.1016/j.crohns.2014.06.004
pubmed: 24998983
Benchimol, E. I., Fortinsky, K. J., Gozdyra, P., Van den Heuvel, M., Van Limbergen, J., & Griffiths, A. M. (2011). Epidemiology of pediatric inflammatory bowel disease: A systematic review of international trends. Inflammatory Bowel Diseases, 17(1), 423–439. https://doi.org/10.1002/ibd.21349 .
doi: 10.1002/ibd.21349
pubmed: 20564651
Defenbaugh, N. L. (2013). Revealing and concealing Ill identity: A performance narrative of IBD disclosure. Health Communication, 28(2), 159–169. https://doi.org/10.1080/10410236.2012.666712 .
doi: 10.1080/10410236.2012.666712
pubmed: 22545720
Barned, C., Stinzi, A., Mack, D., & O’Doherty, K. C. (2016). To tell or not to tell: A qualitative interview study on disclosure decisions among children with inflammatory bowel disease. Social Science & Medicine, 162, 115–123. https://doi.org/10.1016/j.socscimed.2016.06.023 .
doi: 10.1016/j.socscimed.2016.06.023
Carter, B., Rouncefield-Swales, A., Bray, L., et al. (2020). “I don’t like to make a big thing out of it”: A qualitative interview-based study exploring factors affecting whether young people tell or do not tell their friends about their IBD: I don’t like to make a big thing out of it. International Journal of Chronic Diseases. https://doi.org/10.1155/2020/1059025 .
doi: 10.1155/2020/1059025
pubmed: 32953877
pmcid: 7487095
van den Brink, G., Stapersma, L., El Marroun, H., et al. (2016). Effectiveness of disease-specific cognitive–behavioural therapy on depression, anxiety, quality of life and the clinical course of disease in adolescents with inflammatory bowel disease: Study protocol of a multicentre randomised controlled trial (HAPPY-IBD). BMJ Open Gastroenterology, 3(1), e000071. https://doi.org/10.1136/bmjgast-2015-000071 .
doi: 10.1136/bmjgast-2015-000071
pubmed: 26966551
pmcid: 4780038
Greenley, R. N., Hommel, K. A., Nebel, J., et al. (2010). A meta-analytic review of the psychosocial adjustment of youth with inflammatory bowel disease. Journal of Pediatric Psychology, 35(8), 857–869. https://doi.org/10.1093/jpepsy/jsp120 .
doi: 10.1093/jpepsy/jsp120
pubmed: 20123705
pmcid: 3107587
Burke, P., Meyer, V., Kocoshis, S., et al. (1989). Depression and anxiety in pediatric inflammatory bowel disease and cystic fibrosis. Journal of the American Academy of Child & Adolescent Psychiatry, 28(6), 948–951. https://doi.org/10.1097/00004583-198911000-00022 .
doi: 10.1097/00004583-198911000-00022
De Nardi, L., Trombetta, A., Ghirardo, S., Genovese, M. R. L., Barbi, E., & Taucar, V. (2020). Adolescents with chronic disease and social media: A cross-sectional study. Archives of Disease in Childhood. https://doi.org/10.1136/archdischild-2019-317996 .
doi: 10.1136/archdischild-2019-317996
pubmed: 33060125
Maes, M., Van Den Noortgate, W., Fustolo-Gunnink, S. F., Rassart, J., Luyckx, K., & Goossens, L. (2017). Loneliness in children and adolescents with chronic physical conditions: A meta-analysis. Journal of Pediatric Psychology, 42(6), 622–635. https://doi.org/10.1093/jpepsy/jsx046 .
doi: 10.1093/jpepsy/jsx046
pubmed: 28340072
Qualter, P., Vanhalst, J., Harris, R., et al. (2015). Loneliness across the life span. Perspectives on Psychological Science, 10(2), 250–264. https://doi.org/10.1177/1745691615568999 .
doi: 10.1177/1745691615568999
pubmed: 25910393
Matthews, T., Danese, A., Danese, A., et al. (2019). Lonely young adults in modern Britain: Findings from an epidemiological cohort study. Psychological Medicine, 49(2), 268–277. https://doi.org/10.1017/S0033291718000788 .
doi: 10.1017/S0033291718000788
pubmed: 29684289
Matthews, T., Danese, A., Wertz, J., et al. (2016). Social isolation, loneliness and depression in young adulthood: A behavioural genetic analysis. Social Psychiatry and Psychiatric Epidemiology, 51(3), 339–348. https://doi.org/10.1007/s00127-016-1178-7 .
doi: 10.1007/s00127-016-1178-7
pubmed: 26843197
pmcid: 4819590
Keethy, D., Mrakotsky, C., & Szigethy, E. (2014). Pediatric inflammatory bowel disease and depression: Treatment implications. Current Opinion in Pediatrics, 26(5), 561–567. https://doi.org/10.1097/MOP.0000000000000129 .
doi: 10.1097/MOP.0000000000000129
pubmed: 25010217
pmcid: 4229361
Mackner, L. M., & Crandall, W. V. (2008). Psychological aspects of pediatric inflammatory bowel disease. In P. M. J. E. Mamula & R. N. Baldassano (Eds.), Pediatric inflammatory bowel disease (pp. 555–563). Boston, MA: Springer.
doi: 10.1007/978-0-387-73481-1_42
Perrin, J. M., Kuhlthau, K., Chughtai, A., et al. (2008). Measuring quality of life in pediatric patients with inflammatory bowel disease: Psychometric and clinical characteristics. Journal of Pediatric Gastroenterology and Nutrition, 46(2), 164–171. https://doi.org/10.1097/MPG.0b013e31812f7f4e .
doi: 10.1097/MPG.0b013e31812f7f4e
pubmed: 18223375
pmcid: 3065353
Reed-Knight, B., Lee, J. L., Greenley, R. N., Lewis, J. D., & Blount, R. L. (2016). Disease activity does not explain it all: How internalizing symptoms and caregiver depressive symptoms relate to health-related quality of life among youth with inflammatory bowel disease. Inflammatory Bowel Diseases, 22(4), 963–967. https://doi.org/10.1097/MIB.0000000000000686 .
doi: 10.1097/MIB.0000000000000686
pubmed: 26818418
Saunders, B. (2014). Stigma, deviance and morality in young adults’ accounts of inflammatory bowel disease. Sociology of Health & Illness, 36(7), 1020–1036. https://doi.org/10.1111/1467-9566.12148 .
doi: 10.1111/1467-9566.12148
Micallef-Konewko, E. (2013). Talking about an invisible illness: The experience of young people suffering from inflammatory bowel disease (IBD). London: University of East London.
Kaushansky, D., Cox, J., Dodson, C., McNeeley, M., Kumar, S., & Iverson, E. (2017). Living a secret: Disclosure among adolescents and young adults with chronic illnesses. Chronic Illness, 13(1), 49–61. https://doi.org/10.1177/1742395316655855 .
doi: 10.1177/1742395316655855
pubmed: 27343016
Roberts, C. M., Gamwell, K. L., Baudino, M. N., et al. (2019). The contributions of illness stigma, health communication difficulties, and thwarted belongingness to depressive symptoms in youth with inflammatory bowel disease. Journal of Pediatric Psychology. https://doi.org/10.1093/jpepsy/jsz084 .
doi: 10.1093/jpepsy/jsz084
pubmed: 31621853
Gambin, M., & Sharp, C. (2018). The relations between empathy, guilt, shame and depression in inpatient adolescents. Journal of Affective Disorders, 241, 381–387. https://doi.org/10.1016/j.jad.2018.08.068 .
doi: 10.1016/j.jad.2018.08.068
pubmed: 30145508
Kroenke, K., Spitzer, R. L., & Williams, J. B. W. (2001). The PHQ-9: Validity of a brief depression severity measure. Journal of General Internal Medicine, 16(9), 606–613. https://doi.org/10.1046/j.1525-1497.2001.016009606.x .
doi: 10.1046/j.1525-1497.2001.016009606.x
pubmed: 11556941
pmcid: 1495268
Kroenke, K., Spitzer, R. L., Williams, J. B. W., Monahan, P. O., & Löwe, B. (2007). Anxiety disorders in primary care: Prevalence, impairment, comorbidity, and detection. Annals of Internal Medicine, 146(5), 317–325. https://doi.org/10.7326/0003-4819-146-5-200703060-00004 .
doi: 10.7326/0003-4819-146-5-200703060-00004
pubmed: 17339617
Shin, C., Lee, S.-H., Han, K.-M., Yoon, H.-K., & Han, C. (2019). Comparison of the usefulness of the PHQ-8 and PHQ-9 for screening for major depressive disorder: Analysis of psychiatric outpatient data. Psychiatry Investigation, 16(4), 300–305. https://doi.org/10.30773/pi.2019.02.01 .
doi: 10.30773/pi.2019.02.01
pubmed: 31042692
pmcid: 6504773
Wu, Y., et al. (2020). Equivalency of the diagnostic accuracy of the PHQ-8 and PHQ-9: A systematic review and individual participant data meta-analysis. Psychological Medicine, 50, 1368–1380. https://doi.org/10.1017/S0033291719001314
doi: 10.1017/S0033291719001314
pubmed: 31298180
Horton, M., & Perry, A. E. (2016). Screening for depression in primary care: A Rasch analysis of the PHQ-9. BJPsych Bulletin, 40(5), 237–243. https://doi.org/10.1192/pb.bp.114.050294 .
doi: 10.1192/pb.bp.114.050294
pubmed: 27752340
pmcid: 5046780
McMillan, D., Gilbody, S., & Richards, D. (2010). Defining successful treatment outcome in depression using the PHQ-9: A comparison of methods. Journal of Affective Disorders, 127(1), 122–129. https://doi.org/10.1016/j.jad.2010.04.030 .
doi: 10.1016/j.jad.2010.04.030
pubmed: 20569992
Department of Health U. The IAPT Data Handbook Version 2.0: Guidance on Recording and Monitoring Outcomes to Support Local Evidence-Based Practice. https://www.iapt.nhs.uk/2011
National Institute for Health and Care Excellence. Commissioning stepped care for people with common mental health disorders: Guide & Bench Marking Tool CMG41. In: NICE, editor. https://www.nice.org.uk/usingguidance/commissioningguides/commonmentalhealthdisorderservices/common-mentalhealthdisorderservices.jsp2011
Hughes, M. E., Waite, L. J., Hawkley, L. C., & Cacioppo, J. T. (2004). A short scale for measuring loneliness in large surveys: Results from two population-based studies. Research on Aging, 26(6), 655–672. https://doi.org/10.1177/0164027504268574 .
doi: 10.1177/0164027504268574
pubmed: 18504506
pmcid: 2394670
Statistics. OfN. What characteristics and circumstances are associated with feeling lonely. https://www.ons.gov.uk/peoplepopulationandcommunity/wellbeing/articles/lonelinesswhatcharacteristicsandcircumstancesareassociatedwithfeelinglonely/2018-04-102018
Mendelson, M. J., & Aboud, F. E. (1999). Measuring friendship quality in late adolescents and young adults: McGill friendship questionnaires. Canadian Journal of Behavioural Science/Revue canadienne des Sciences du comportement, 31(2), 130–132. https://doi.org/10.1037/h0087080 .
doi: 10.1037/h0087080
Smith, H. M., & Betz, N. E. (2000). Development and validation of a scale of perceived social self-efficacy. Journal of Career Assessment, 8(3), 283–301. https://doi.org/10.1177/106907270000800306 .
doi: 10.1177/106907270000800306
Babyak, M. A. (2004). What you see may not be what you get: A brief, nontechnical introduction to overfitting in regression-type models. Psychosomatic Medicine, 66(3), 411–421. https://doi.org/10.1097/00006842-200405000-00021 .
doi: 10.1097/00006842-200405000-00021
pubmed: 15184705
Harrell, F. E. (2001). Regression modeling strategies: With applications to linear models, logistic regression and survival analysis. New York: Springer.
doi: 10.1007/978-1-4757-3462-1
Hox, J. J., Maas, C. J. M., & Brinkhuis, M. J. S. (2010). The effect of estimation method and sample size in multilevel structural equation modeling. Statistica Neerlandica, 64(2), 157–170. https://doi.org/10.1111/j.1467-9574.2009.00445.x .
doi: 10.1111/j.1467-9574.2009.00445.x
Browne, M. W., & Cudeck, R. (1993). Alternative ways of assessing model fit. In K. A. L. J. Bollen (Ed.), Testing structural equation models (pp. 136–162). Newburry Park, CA: Sage.
Marsh, H. W., Hau, K.-T., & Wen, Z. (2004). In search of golden rules: Comment on hypothesis-testing approaches to setting cutoff values for fit indexes and dangers in overgeneralizing Hu and Bentler’s (1999) Findings. Structural Equation Modeling: A Multidisciplinary Journal, 11(3), 320–341. https://doi.org/10.1207/s15328007sem1103_2 .
doi: 10.1207/s15328007sem1103_2
Menting, J., Tack, C. J., Bleijenberg, G., et al. (2018). Is fatigue a disease-specific or generic symptom in chronic medical conditions? Health Psychology, 37(6), 530–543. https://doi.org/10.1037/hea0000598 .
doi: 10.1037/hea0000598
pubmed: 29781654
Yoon, I. A., Sturgeon, J. A., Feinstein, A. B., & Bhandari, R. P. (2019). The role of fatigue in functional outcomes for youth with chronic pain. European Journal of Pain, 23(8), 1548–1562. https://doi.org/10.1002/ejp.1431 .
doi: 10.1002/ejp.1431
pubmed: 31131940
Goedendorp, M. M., Gielissen, M. F., Verhagen, C. A., & Bleijenberg, G. (2013). Development of fatigue in cancer survivors: A prospective follow-up study from diagnosis into the year after treatment. Journal of Pain and Symptom Management, 45(2), 213–222. https://doi.org/10.1016/j.jpainsymman.2012.02.009 .
doi: 10.1016/j.jpainsymman.2012.02.009
pubmed: 22926087
van Hoogmoed, D., Fransen, J., Bleijenberg, G., & van Riel, P. (2010). Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis. Rheumatology, 49(7), 1294–1302. https://doi.org/10.1093/rheumatology/keq043 .
doi: 10.1093/rheumatology/keq043
pubmed: 20353956
Dregan, A., Matcham, F., Harber-Aschan, L., et al. (2019). Common mental disorders within chronic inflammatory disorders: A primary care database prospective investigation. Annals of the Rheumatic Diseases, 78(5), 688–695. https://doi.org/10.1136/annrheumdis-2018-214676 .
doi: 10.1136/annrheumdis-2018-214676
pubmed: 30846444