https://doi.org/10.4081/reumatismo.2024.1689

Disease disclosure in the workplace in people living with rheumatic diseases: an exploratory study

Vol. 76 No. 4 (2024)
Submitted: 3 December 2023
Accepted: 23 May 2024
Published: 1 October 2024
Rheumatic disease, invisible disability, chronic disease, disease disclosure, health disclosure
Abstract Views: 790
PDF: 82
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Authors

S.M.T. Ostuzzi
silviaostuzzi.alomar@gmail.com
https://orcid.org/0000-0001-9768-547X
ALOMAR ODV – Lombard Association for Rheumatic Diseases, Milan, Italy.
E.N. Aiello
Department of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan, Italy.
F. Ingegnoli
https://orcid.org/0000-0002-6727-1273
Clinical Rheumatology Unit, ASST Pini, Milan; Department of Clinical Sciences and Community Health, Research Center for Adult and Pediatric Rheumatic Diseases, Research Center for Environmental Health, University of Milan, Italy.
C. Pistarini
Department of Neurorehabilitation, Istituti Clinici Scientifici Maugeri IRCCS, Pavia, Italy.
B. Poletti
Department of Neurology and Laboratory of Neuroscience, IRCCS Istituto Auxologico Italiano, Milan; Department of Oncology and Hemato-Oncology, University of Milan, Italy.
V. Silani
https://orcid.org/0000-0002-7698-3854
Clinical Rheumatology Unit, ASST Pini, Milan; Department of Pathophysiology and Transplantation, “Dino Ferrari” Center, University of Milan, Italy.
E. Fiabane
Psychology Unit, Istituti Clinici Scientifici Maugeri IRCCS, Pavia, Italy.

Objective. Rheumatic musculoskeletal diseases (RMDs) are the causes of frequent absence from work and loss of productivity. As (in)visible diseases, it is up to the individuals to decide if disclosing their diagnosis, with important repercussions also within the workplace. Still little is known about disease disclosure in the workplace (DD-W) in patients with RMDs. This study aimed to investigate socio-demographic, clinical, and psychological predictors of DD-W among working patients with RMDs.

Methods. A cross-sectional Italian national study captured DD-W in people with RMDs. An online survey was developed using ad-hoc questions and scientific questionnaires to explore demographics and work-related, clinical, and psychological factors. Stepwise logistic regressions were run to identify significant predictors of DD-W.

Results. A total of 250 working rheumatic patients completed the survey; 81.2% of the participants enacted DD-W. DD-W behaviors were predicted by perceived visibility of the RMD (p=0.008), work type (p=0.022), general DD behaviors (p<0.001), and perceived family support (p=0.023). Among RMD patients, psoriatic arthritis participants had higher probabilities of DD-W (p=0.02), whereas lower probabilities were detected in fibromyalgia patients (p=0.003). Lower disease duration corresponded in the sample to higher probabilities of DD-W (p=0.036).

Conclusions. The majority of RMD patients in this study enacted DD-W. DD-W was associated with medical, occupational, and psychological factors, supporting the multidimensionality of the process. Further research on the subject might help foster better DD-W decision-making processes for RMD patients while promoting intervention strategies in education, policy, and culture.

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Crossref
Scopus
Google Scholar
Europe PMC
Ingegnoli F, Schioppo T, Ubiali T, Bollati V, Ostuzzi S, Buoli M, et al. Relevant non-pharmacologic topics for clinical research in rheumatic musculoskeletal diseases: the patient perspective. Int J Rheum Dis 2020; 23: 1305-10. DOI: https://doi.org/10.1111/1756-185X.13932
van der Heijde D, Daikh DI, Betteridge N, Burmester GR, Hassett AF, Matteson EL, et al. Common language description of the term rheumatic and musculoskeletal diseases (RMDs) for use in communication with the lay public, healthcare providers, and other stakeholders endorsed by the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR). Arthritis Rheumatol 2018; 70: 826-31. DOI: https://doi.org/10.1002/art.40448
Rogier C, de Jong PHP, van der Helm-van Mil AHM, van Mulligen E. Work participation is reduced during the development of RA, months before clinical arthritis manifests. Rheumatology 2022; 61: 2583-9. DOI: https://doi.org/10.1093/rheumatology/keab793
Yelin E. Work disability in rheumatic diseases. Curr Opin Rheumatol 2007; 19: 91-6. DOI: https://doi.org/10.1097/BOR.0b013e3280126b66
The Work Doundation. Fit for work? Musculoskeletal disorders in the European workforce. Available from: https://www.bollettinoadapt.it/old/files/document/3704FOUNDATION_19_10.pdf.
Connolly D, Fitzpatrick C, O’Toole L, Doran M, O’Shea F. Impact of fatigue in rheumatic diseases in the work environment: a qualitative study. Int J Environ Res Public Health 2015; 12: 13807-22. DOI: https://doi.org/10.3390/ijerph121113807
Geenen R, Newman S, Bossema ER, Vriezekolk JE, Boelen PA. Psychological interventions for patients with rheumatic diseases and anxiety or depression. Best Pract Res Clin Rheumatol 2012; 26: 305-19. DOI: https://doi.org/10.1016/j.berh.2012.05.004
Ingegnoli F, Schioppo T, Ubiali T, Ostuzzi S, Bollati V, Buoli M, et al. Patient perception of depressive symptoms in rheumatic diseases: a cross-sectional survey. J Clin Rheumatol 2022; 28: e18-22. DOI: https://doi.org/10.1097/RHU.0000000000001564
Torta R, Pennazio F, Ieraci V. Anxiety and depression in rheumatologic diseases: the relevance of diagnosis and management. Reumatismo 2014; 66: 92-7. DOI: https://doi.org/10.4081/reumatismo.2014.769
Burmester GR, Bijlsma JWJ, Cutolo M, McInnes IB. Managing rheumatic and musculoskeletal diseases – past, present and future. Nat Rev Rheumatol 2007; 13: 443-8. DOI: https://doi.org/10.1038/nrrheum.2017.95
Manara M, Caporali R, Lomater C, Gorla R, Fusaro E, Sarzi-Puttini P, et al. Impact of one-year treatment with biotechnological drugs on work ability in patients with rheumatoid arthritis in Italy: a prospective real-life study. Clin Exp Rheumatol 2021; 39: 263-8. DOI: https://doi.org/10.55563/clinexprheumatol/q69z52
Overman CL, Jurgens MS, Bossema ER, Jacobs JW, Bijlsma JWJ, Geenen R. Change of psychological distress and physical disability in patients with rheumatoid arthritis over the last two decades. Arthritis Care Res 2014; 66: 671-8. DOI: https://doi.org/10.1002/acr.22211
Norstedt M. Work and invisible disabilities: practices, experiences and understandings of (non)disclosure. Scand J Disabil Res 2019; 21: 14-24. DOI: https://doi.org/10.16993/sjdr.550
Samuels EJ. My body, my closet: invisible disability and the limits of coming-out discourse. GLQ 2003; 9: 233-55. DOI: https://doi.org/10.1215/10642684-9-1-2-233
Greene K, Derlega VI, Mathews A. Self-disclosure in personal relationships. In: Vangelisti AL, Perlman D, eds. The Cambridge handbook of personal relationships. Cambridge: Cambridge University Press; 2006. pp 409-27. DOI: https://doi.org/10.1017/CBO9780511606632.023
Greene K. An integrated model of health disclosure decision making. In: Afifi TD, Afifi WA, eds. Uncertainty, information management, and disclosure decisions. Theories and applications. New York: Routledge/Taylor & Francis Group; 2009. pp 226-53.
Ostuzzi S, Ingegnoli F, Pistarini C, Aiello EN, Fiabane EM. (Un)disclosed. Disease disclosure in people living with rheumatic diseases: an exploratory study. Intl J Rheum Dis 2022; 25: 295-302. DOI: https://doi.org/10.1111/1756-185X.14263
Jetha A, Tucker L, Backman C, Kristman VL, Bowring J, Hazel EM, et al. Rheumatic disease disclosure at the early career phase and its impact on the relationship between workplace supports and presenteeism. Arthritis Care Res 2022; 74: 1751-60. DOI: https://doi.org/10.1002/acr.24620
Kroenke K, Spitzer RL, Williams JB, Löwe B. An ultra-brief screening scale for anxiety and depression: the PHQ-4. Psychosomatics 2009; 50: 613-21. DOI: https://doi.org/10.1016/S0033-3182(09)70864-3
Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 2006; 166: 1092-7. DOI: https://doi.org/10.1001/archinte.166.10.1092
Kroenke K, Spitzer RL, Williams JB. The PHQ-9: validity of a brief depression severity measure. J Genl Intern Med 2001; 16: 606-13. DOI: https://doi.org/10.1046/j.1525-1497.2001.016009606.x
Earnshaw VA, Quinn DM, Kalichman SC, Park CL. Development and psychometric evaluation of the chronic illness anticipated stigma scale. J Behav Med 2013; 36: 270-82. DOI: https://doi.org/10.1007/s10865-012-9422-4
Spadaro G, Romano A, Mosso CO. Italian contribute to the CIASS validation. G Ital Med Lav Ergon 2017; 39: 49-55. [Article in Italian].
Graffigna G, Barello S, Bonanomi A, Lozza E. Measuring patient engagement: development and psychometric properties of the patient health engagement (PHE) scale. Front Psychol 2015; 6: 274. DOI: https://doi.org/10.3389/fpsyg.2015.00274
Prezza M, Principato MC. La rete sociale e il sostegno sociale. In: Prezza M, Santinello M, eds. Conoscere la comunità. Bologna: Il Mulino; 2002. pp 193-233.
Zimet GD, Powell SS, Farley GK, Werkman S, Berkoff KA. Psychometric characteristics of the multidimensional scale of perceived social support. J Pers Assess 1990; 55: 610-7. DOI: https://doi.org/10.1207/s15327752jpa5503&4_17
Gragnano A, Miglioretti M, Frings-Dresen MHW, de Boer AGEM. Adjustment between work demands and health needs: development of the work-health balance questionnaire. Rehabil Psychol 2017; 62: 374-86. DOI: https://doi.org/10.1037/rep0000121
Apolone G, Mosconi P. The Italian SF-36 health survey: translation, validation and norming. J Clin Epidemiol 1998; 51: 1025-36. DOI: https://doi.org/10.1016/S0895-4356(98)00094-8
Ware JE Jr, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection. Med Care 1992; 30: 473-83. DOI: https://doi.org/10.1097/00005650-199206000-00002
Nieuwkoop L. PARE youth research project. Ann Rheum Dis 2014; 73: 39-40. DOI: https://doi.org/10.1136/annrheumdis-2014-eular.6231
Põldemaa I, Tammaru M, De Wit M. PARE youth research project – final report. Available from: https://www.slideshare.net/IngridPmaa/final-reportpareyouth. Accessed on: 24/07/2023.
Fesko SL. Disclosure of HIV status in the workplace: considerations and strategies. Health Soc Work 2001; 26: 235-44. DOI: https://doi.org/10.1093/hsw/26.4.235
Munir F, Leka S, Griffiths A. Dealing with self-management of chronic illness at work: predictors for self-disclosure. Soc Sci Med 2005; 60: 1397-407. DOI: https://doi.org/10.1016/j.socscimed.2004.07.012
Charmaz K. Disclosing illness and disability in the workplace. J Int Educ Bus 2010; 3: 6-19. DOI: https://doi.org/10.1108/18363261011106858
Dray-Spira R, Gueguen A, Lert F. Disease severity, self-reported experience of workplace discrimination and employment loss during the course of chronic HIV disease: differences according to gender and education. Occup Environ Med 2008; 65: 112-9. DOI: https://doi.org/10.1136/oem.2007.034363
Frndak SE, Kordovski VM, Cookfair D, Rodgers JD, Weinstock-Guttman B, Benedict RHB. Disclosure of disease status among employed multiple sclerosis patients: association with negative work events and accommodations. Mult Scler 2015; 21: 225-34. DOI: https://doi.org/10.1177/1352458514540971
Borschuk AP, Everhart RS, Eakin MN, Rand-Giovannetti D, Borrelli B, Riekert KA. Disease disclosure in individuals with cystic fibrosis: association with psychosocial and health outcomes. J Cys Fibros 2016; 15: 696-702. DOI: https://doi.org/10.1016/j.jcf.2016.02.011
Guo L, Rohde J, Farraye FA. Stigma and disclosure in patients with inflammatory bowel disease. Inflamm Bowel Dis 2020; 26: 1010-6. DOI: https://doi.org/10.1093/ibd/izz260
Olesen K, Cleal B, Skinner T, Willaing I. Characteristics associated with non-disclosure of type 2 diabetes at work. Diabet Med 2017; 34: 1116-9. DOI: https://doi.org/10.1111/dme.13386
Stergiou-Kita M, Pritlove C, Kirsh B. The “big C”-stigma, cancer, and workplace discrimination. J Cancer Surviv 2016; 10: 1035-50. DOI: https://doi.org/10.1007/s11764-016-0547-2
Toth KE, Dewa CS. Employee decision-making about disclosure of a mental disorder at work, J Occup Rehabil 2014; 24: 732-46. DOI: https://doi.org/10.1007/s10926-014-9504-y
Lindsay S, Osten V, Rezai M, Bui S. Disclosure and workplace accommodations for people with autism: a systematic review. Disabil Rehabil 2021; 43: 597-610. DOI: https://doi.org/10.1080/09638288.2019.1635658
van Beukering IE, Smits SJC, Janssens KME, Bogaers RI, Joosen MCW, Bakker M, et al. In what ways does health related stigma affect sustainable employment and well-being at work? A systematic review. J Occup Rehabil 2022; 32: 365-79. DOI: https://doi.org/10.1007/s10926-021-09998-z
Gignac MAM, Jetha A, Martin Ginis KA, Ibrahim S. Does it matter what your reasons are when deciding to disclose (or not disclose) a disability at work? The association of workers’ approach and avoidance goals with perceived positive and negative workplace outcomes. J Occup Rehabil 2021; 31: 638-51. DOI: https://doi.org/10.1007/s10926-020-09956-1
Berkovic D, Ayton D, Briggs AM, Ackerman IN. “I would be more of a liability than an asset”: navigating the workplace as a younger person with arthritis. J Occup Rehabil 2020; 30: 125-34. DOI: https://doi.org/10.1007/s10926-019-09853-2
Gignac MAM, Cao X. “Should I tell my employer and coworkers I have arthritis?” A longitudinal examination of self-disclosure in the work place. Arthritis Rheum 2009; 61: 1753-61. DOI: https://doi.org/10.1002/art.24889
Oldfield M, MacEachen E, Kirsh B, Macneill M. Impromptu everyday disclosure dances: how women with fibromyalgia respond to disclosure risks at work. Disabil Rehabil 2016; 38: 1442-53. DOI: https://doi.org/10.3109/09638288.2015.1103794
Chelune GJ, Robison JT, Kommor MJ. A cognitive interactional model of intimate relationships. In: Derlega VJ, ed. Communication, intimacy and close relationships. New York: Academic Press; 1984. pp 11-40. DOI: https://doi.org/10.1016/B978-0-12-210840-2.50007-2
Modi AC, Quittner AL, Boyle MP. Assessing disease disclosure in adults with cystic fibrosis: the adult data for understanding lifestyle and transitions (ADULT) survey disclosure of disease in adults with cystic fibrosis. BMC Pulm Med 2010; 10: 46. DOI: https://doi.org/10.1186/1471-2466-10-46
Eysenbach G, Wyatt J. Using the Internet for surveys and health research. J Med Internet Res 2002; 4: E13. DOI: https://doi.org/10.2196/jmir.4.2.e13
Capell B, Tzafrir SS, Dolan SL. The disclosure of concealable stigmas: analysis anchored in trust. Cogent Psychol 2016; 3: 1121066. DOI: https://doi.org/10.1080/23311908.2015.1121066
Restall G, Diaz F, Faucher P, Roger K. Participatory design and qualitative evaluation of a decision guide for workplace human immunodeficiency virus self-disclosure: the importance of a socio-ecological perspective. Health Expectations 2021; 24: 1220-9. DOI: https://doi.org/10.1111/hex.13252

How to Cite

Ostuzzi, S., Aiello, E., Ingegnoli, F., Pistarini, C., Poletti, B., Silani, V., & Fiabane, E. (2024). Disease disclosure in the workplace in people living with rheumatic diseases: an exploratory study. Reumatismo, 76(4). https://doi.org/10.4081/reumatismo.2024.1689
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