Skip to main content

Advertisement

SpringerLink
Log in

Partner Burden: A Common Entity in Celiac Disease

  • Original Article
  • Published:
Digestive Diseases and Sciences Aims and scope Submit manuscript

Abstract

Background

Caregiver burden is documented in several chronic diseases, but it has not been investigated in celiac disease (CD).

Aims

We aim to quantify the burden to partners of CD patients and identify factors that affect the perceived burden.

Methods

We surveyed patients with biopsy-proven CD and their partners. Patients completed CD-specific questions, including the validated Celiac Symptom Index (CSI) survey. Partners completed the validated Zarit Burden Interview (ZBI) and questions regarding sexual and relationship satisfaction. Univariable and multivariable analyses were used to assess the association between demographics, CD characteristics, and partner burden.

Results

In total, 94 patient/partner pairs were studied. Fifteen patients (16 %) reported a CSI score associated with a poor quality of life, and 34 partners (37 %) reported a ZBI score corresponding to mild-to-moderate burden. Twenty-two partners (23 %) reported moderate-to-low overall relationship satisfaction, and 12 (14 %) reported moderate-to-low sexual satisfaction. The degree of partner burden was directly correlated with patient CSI score (r = 0.27; p = 0.008), and there were moderate-to-strong inverse relationships between partners’ burden and relationship quality (r = −0.70; p < 0.001) and sexual satisfaction (r = −0.42; p < 0.001). On multivariable logistic regression, predictors of mild-to-moderate partner burden were low partner relationship satisfaction (OR 17.06, 95 % CI 2.88–101.09, p = 0.002) and relationship duration ≥10 years (OR 14.42, 95 % CI 1.69–123.84, p = 0.02).

Conclusions

Partner burden is common in CD, with more than one-third of partners experiencing mild-to-moderate burden. Partner burden is directly correlated with patient symptom severity, and it increases with poorer sexual and relationship satisfaction. Healthcare providers should address relationship factors in their care of patients with CD.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Similar content being viewed by others

Abbreviations

IBS:

Irritable bowel syndrome

CD:

Celiac disease

GFD:

Gluten-free diet

CSI:

Celiac Symptom Index

RS:

Relationship Scale

ZBI:

Zarit Burden Interview

References

  1. Zarit S, Reever K, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20:649–655.

    Article  CAS  PubMed  Google Scholar 

  2. Jacobi C, van den Berg B, Boshuizen H, Rupp I, Dinant HJ, van den Bos GAM. Dimension specific burden of caregiving amongst partners of RA patients. Rheumatology. 2003;42:1226–1233.

    Article  CAS  PubMed  Google Scholar 

  3. Reich J, Olmsted E, van Puymbroeck C. Illness uncertainty, partner caregiver burden and support and relationship satisfaction in fibromyalgia and OA patients. Arthritis Rheum. 2006;55:86–93.

    Article  PubMed  Google Scholar 

  4. McConaghy R, Caltabiano M. Caring for a person with dementia: exploring relationships between perceived burden, depression, coping and well-being. Nurs Health Sci. 2005;7:81–91.

    Article  PubMed  Google Scholar 

  5. Wong R, Drossman D, Weinland S, et al. Partner burden in irritable bowel syndrome. Clin Gastroenterol Hepatol. 2013;11:151–155.

    Article  PubMed  Google Scholar 

  6. Institute AGA. AGA institute medical position statement on the diagnosis and management of celiac disease. Gastroenterology. 2006;131:1977–1980.

    Article  Google Scholar 

  7. Green P, Jabri B. Coeliac disease. Lancet. 2003;362:383–391.

    Article  CAS  PubMed  Google Scholar 

  8. Green P, Cellier C. Celiac disease. N Engl J Med. 2007;357:1731–1743.

    Article  CAS  PubMed  Google Scholar 

  9. Ludvigsson JF, Montgomery SM, Ekbom A, Brandt L, Granath F. Small-intestinal histopathology and mortality risk in celiac disease. JAMA. 2009;302:1171–1178.

    Article  CAS  PubMed  Google Scholar 

  10. Hallert C, Granno C, Hulten S, et al. Living with coeliac disease: controlled study of the burden of illness. Scand J Gastroenterol. 2002;37:39–42.

    Article  CAS  PubMed  Google Scholar 

  11. Lee AR, Ng DL, Diamond B, Ciaccio EJ, Green PHR. Living with coeliac disease: survey results from the USA. J Hum Nutr Diet. 2012;25:233–238.

    Article  CAS  PubMed  Google Scholar 

  12. Lee AR, Ng DL, Zivin J, Green PH. Economic burden of a gluten-free diet. J Hum Nutr Diet. 2007;20:423–430.

    Article  CAS  PubMed  Google Scholar 

  13. Mustalahti K, Lohiniemi S, Collin P, Vuolteenaho N, Laippala P, Maki M. Gluten-free diet and quality of life in patients with screen-detected celiac disease. Eff Clin Pract. 2002;5:105–113.

    PubMed  Google Scholar 

  14. Johnston S, Rodgers C, Watson R. Quality of life in screen-detected and typical coeliac disease and the effect of excluding dietary gluten. Eur J Gastroenterol Hepatol. 2004;16:1281–1286.

    Article  PubMed  Google Scholar 

  15. Hallert C, Granno C, Grant C, et al. Quality of life of adult coeliac patients treated for 10 years. Scand J Gastroenterol. 1998;33:933–938.

    Article  CAS  PubMed  Google Scholar 

  16. Ciacci C, D’Agate C, De Rosa A, et al. Self-rated quality of life in celiac disease. Dig Dis Sci. 2003;48:2216–2220.

    Article  CAS  PubMed  Google Scholar 

  17. Häuser W, Stallmach A, Caspary WF, Stein J. Predictors of reduced health-related quality of life in adults with coeliac disease. Aliment Pharmacol Ther. 2007;25:569–578.

    Article  PubMed  Google Scholar 

  18. Addolorato G, Mirijello A, D’Angelo C, et al. Social Phobia in coeliac disease. Scand J Gastroenterology. 2008;43:410–415.

    Article  Google Scholar 

  19. Ciacci C, De Rosa A, de Michele G, et al. Sexual behaviour in untreated and treated coeliac patients. Eur J Gastroenterol Hepatol. 1998;10:649–651.

    Article  CAS  PubMed  Google Scholar 

  20. Leffler D, Dennis M, Edwards George J, et al. A validated disease-specific symptom index for adults with celiac disease. Clin Gastroenterol Hepatol. 2009;7:1328–1334.

    Article  PubMed  Google Scholar 

  21. Hendrick S. A generic measure of relationship satisfaction. J Marriage Fam. 1988;50:93–98.

    Article  Google Scholar 

  22. Ankri J, Andrieu S, Beaufils B, Grand A, Henrard JC. Beyond the global score of the ZBI: useful dimensions for clinicians. Int J Geriatr Psychiatry. 2005;20:254–260.

    Article  PubMed  Google Scholar 

  23. Higginson I, Gao W. Caregiver assessment of patients with advanced cancer: concordance with patients, effects of burden and positivity. Health Qual Life Outcomes. 2008;6:42.

    Article  PubMed  PubMed Central  Google Scholar 

  24. Hebert R, Bravo G, Preville M. Reliability, validity and reference values of the Zarit Burden Interview for assessing informal caregivers of community-dwelling older persons with dementia. Can J Aging. 2000;4:494–507.

    Article  Google Scholar 

  25. Rao S, Yu S, Fedewa A. Systematic review: dietary fibre and FODMAP-restricted diet in the management of constipation and irritable bowel syndrome. Aliment Pharmacol Ther. 2015;12:1256–1270.

    Article  CAS  Google Scholar 

  26. Blanchard EB, Lackner JM, Jaccard J, et al. The role of stress in symptom exacerbation among IBS patients. J Psychosom Res. 2008;2:119–128.

    Article  Google Scholar 

  27. Dorn SD, Hernandez L, Minaya MT, et al. Psychosocial factors are more important than disease activity in determining gastrointestinal symptoms and health status in adults at a celiac disease referral center. Dig Dis Sci. 2010;55:3154–3163.

    Article  PubMed  Google Scholar 

  28. Abu Daya H, Lebwohl B, Lewis SK, Green PH. Celiac disease patients presenting with anemia have more severe disease than those presenting with diarrhea. Clin Gastroenterol Hepatol. 2013;11:1472–1477.

    Article  PubMed  Google Scholar 

Download references

Author contributions

The guarantor of this manuscript is Peter HR Green. Specific author contributions include: Abhik Roy contributed to study concept and design, acquisition of data, analysis and interpretation of data, drafting of the manuscript, and critical revision of the manuscript for important intellectual content; Maria Minaya, Milka Monegro, Jude Fleming, Reuben K Wong, Suzanne Lewis, Benjamin Lebwohl, Peter HR Green contributed to study concept and design, acquisition of data, and critical revision of the manuscript for important intellectual content. All authors approved the final version of the manuscript.

Author information

Authors and Affiliations

  1. Department of Medicine, Celiac Disease Center, Columbia University College of Physicians and Surgeons, Columbia University Medical Center, Harkness Pavilion, 180 Fort Washington Ave, Room 936, New York, NY, 10032, USA

    Abhik Roy, Maria Minaya, Milka Monegro, Jude Fleming, Suzanne Lewis, Benjamin Lebwohl & Peter H. R. Green

  2. Department of Medicine, National University of Singapore, Singapore, Singapore

    Reuben K. Wong

  3. Department of Gastroenterology and Hepatology, University Medical Cluster, National University Hospital, Level 10 NUHS Tower Block, Singapore, 119228, Singapore

    Reuben K. Wong

Authors
  1. Abhik Roy
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria Minaya
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Milka Monegro
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jude Fleming
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Reuben K. Wong
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Suzanne Lewis
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Benjamin Lebwohl
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Peter H. R. Green
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Peter H. R. Green.

Ethics declarations

Conflict of interest

Abhik Roy, Maria Minaya, Milka Monegro, Jude Fleming, Reuben K Wong, Suzanne Lewis, Benjamin Lebwohl, and Peter HR Green declare that they have no conflict of interest (financial, professional, or personal) that is relevant to the manuscript.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Roy, A., Minaya, M., Monegro, M. et al. Partner Burden: A Common Entity in Celiac Disease. Dig Dis Sci 61, 3451–3459 (2016). https://doi.org/10.1007/s10620-016-4175-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10620-016-4175-5

Keywords

Search

Navigation