1. Quality of Life in sarcoidosis: a conceptual model PhD student: Willemien de Kleijn, MSc, CoRPS, Tilburg, The Netherlands. Supervisors: Jolanda de Vries, PhD, CoRPS Tilburg, The Netherlands. Marjolein Drent, PhD, MD, Maastricht University Medical Centre, The Netherlands Willemien de Kleijn

2. Introduction Voetnoot / Literatuurverwijzing Introduction Sarcoidosis: Prevalence: 10 to 20 / 100 000; Age 25-45. 1 Cause unknown; Good prognosis, but may become chronic. 2 1 Valeyre et al., 2010, 2 Dempsey et al., 2009

3. Introduction Voetnoot / Literatuurverwijzing Introduction Sarcoidosis: Highly variable clinical course Spontaneous inflammations Multisystem Fatigue

4. Introduction Voetnoot / Literatuurverwijzing Introduction Quality of Life (QOL) and Sarcoidosis: QOL is impaired in sarcoidosis 1 Impaired QOL is problematic Factors associated with QOL potential targets for therapy 1 De Vries, Lower, & Drent, 2010

5. Introduction Voetnoot / Literatuurverwijzing Introduction However, knowledge concerning prognostic factors is lacking in sarcoidosis. 1 1 De Vries, Lower, & Drent, 2010

6. QOL SexFatigueCorticosteriodsPain Introduction Voetnoot / Literatuurverwijzing Introduction De Vries, Lower, & Drent, 2010 QOL Fatigue Dyspnea Sex Pain Depressive symptoms Corticosteroids Lung function tests Radiographic stage

7. Introduction Voetnoot / Literatuurverwijzing Introduction Aim: To develop and test a conceptual model of Quality of Life in sarcoidosis

8. Introduction Voetnoot / Literatuurverwijzing Methods Patients All outpatients of the sarcoidosis management centre, Maastricht University Medical Centre, the Netherlands Diagnosis of sarcoidosis based on WASOG guidelines 1 Exclusion: relevant co-morbidity poor expression in the Dutch language 1 Joint Statement of the American Thoracic Society et al., 1999

9. Introduction Voetnoot / Literatuurverwijzing Methods Flowchart patients selection All patients (n = 588) Eligible patients (n = 575) Baseline participants (n = 443) 18 months follow-up (n = 317) Drop-outs (n = 127) Non-participants (n = 132) Non-eligible patients (n = 13)

10. Introduction Voetnoot / Literatuurverwijzing Methods Questionnaires, at inclusion: Fatigue Assessment Scale Center for Epidemiologic Studies Depression Scale State-Trait Anxiety Inventory Perceived Social Support Scale Borg- index dyspnea Small Fiber Neuropathy Screenings List

11. Introduction Voetnoot / Literatuurverwijzing Methods Questionnaire, at follow-up: World Health Organization Quality of Life-Bref version Medical records: Sex Age Time since diagnosis

12. Introduction Voetnoot / Literatuurverwijzing Methods Statistical procedures: AMOS Path Analysis 1 Taylor & Aspinwall, 1996 Previous findings Model Taylor Aspinwall 1 Conceptual Model QOL

13. Depressive symptoms Trait anxiety Fatigue Quality of Life Follow-up Social Support Age Sex Small Fiber Neuropathy Dyspnea Time since diagnosis Theoretical framework

14. Introduction Voetnoot / Literatuurverwijzing Depressive symptoms Trait anxiety Fatigue Quality of Life Follow-up Social Support Age Sex Small Fiber Neuropathy Dyspnea -.14 -.33 -.18.42.82.18.31.30.10 -.29 -.28 -.11 Time since diagnosis.13.10 Results -.14 -.11 -.12

15. Introduction Voetnoot / Literatuurverwijzing Depressive symptoms Trait anxiety Fatigue Quality of Life Follow-up Social Support Age Sex Small Fiber Neuropathy Dyspnea -.14 -.33 -.18.42.82.18.31.30.10 -.29 -.28 -.11 Time since diagnosis.13.10 Results -.14 -.11 -.12

16. Introduction Voetnoot / Literatuurverwijzing Discussion To improve QOL in sarcoidosis patients, focus on: Fatigue Depressive symptoms Small Fiber Neuropathy associated-symptoms Dyspnea Males and younger patients

17. Introduction Voetnoot / Literatuurverwijzing Discussion Next step: Moderator(s) or mediator(s)? Future research: More follow-up measures Replicate and expand model

18. Introduction Voetnoot / Literatuurverwijzing Thank you for your attention. Questions or suggestions? Contact information: w.p.e.dekleijn@uvt.nl This study was supported by a grant of the Sarcoidoïse Belangen Vereniging (Dutch Sarcoidosis Society) www.sarcoidose.nl www.sarcoidose.nl

19. Introduction Voetnoot / Literatuurverwijzing Extra slides Fit indices Fit indices were good Chi-Square badness-of-fit =26.82 df =25, p =.37 p ≥.05 Adjusted Goodness of fit index =.96 AGFI ≥ 0.95 Tucker Lewis Index =.99 TLI ≥ 0.95 Root Mean Square Error of Approximation =.02 (CI.00-.05) RMSEA ≤.05 The model explained 35% of the variance in QOL.

20. Extra slides Model of Taylor and Aspinwall External Resources Appraissal Stressor Coping Personal Resources Social Support Psychosocial Outcome

21. 1 Hoitsma, De Vries & Drent. 2010 I have painful arms. Never Sometimes Fluctuating Often Always I suffer from muscle cramps. Never Sometimes Fluctuating Often Always My feet and/or hands are colder than I am used to. Never Sometimes Fluctuating Often Always I have chest pain. Never Sometimes Fluctuating Often Always Extra Slide Small Fiber Neuropathy Screening List

22. Dempsey, O. J., Paterson, E. W., Kerr, K. M., & Denison, A. R. (2009). Sarcoidosis (Clinical review). BMJ, 339, 620-625. De Vries, J., Lower, E.E., & Drent, M. (2010). Quality of life in sarcoidosis: Assessment and Management. Seminars in respiratory and critical care medicine, 31(4), 485-493. Statement on sarcoidosis. Joint Statement of the American Thoracic Society (ATS), the European Respiratory Society (ERS) and the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) adopted by the ATS Board of Directors and by the ERS Executive Committee, February 1999. (1999). Am J Respir Crit Care Med, 160(2), 736-755. Taylor, S.E. and Aspinwall, L.G. (1996). Mediating and moderating processes in psychosocial stress. In:Kaplan, H.B. (Ed.), Psychosocial stress. Perspectives on Structures, Theory, Life-Course and Methods,pp. 71–110. Academic Press, San Diego, CA. Valeyre, D. Freynet, O., Dion, G., Bouvry, D., Annesi-Maesano, I., Nunes, H. (2010). Épidémiologie des pneumopathies infiltrantes diffuses [Epidemiology of interstitial lung diseases]. Presse Med, 39(1):53-9. Extra slides References