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. 2022 Jun;291(6):849-855.
doi: 10.1111/joim.13451. Epub 2022 Jan 24.

Primary Sjögren's syndrome: Longitudinal real-world, observational data on health-related quality of life

Jessica Tarn  1 , Dennis Lendrem  1 , Peter McMeekin  2 , Clare Lendrem  3 , Ben Hargreaves  4 , Wan-Fai Ng  1   4
Affiliations

Primary Sjögren's syndrome: Longitudinal real-world, observational data on health-related quality of life

Jessica Tarn et al. J Intern Med. 2022 Jun.

Abstract

Introduction: Primary Sjögren's syndrome (pSS) is a chronic inflammatory condition, which presents with symptoms of dryness, pain, fatigue and often symptoms of anxiety and depression. Health-related quality of life (HRQoL) is significantly reduced in pSS and the direct and indirect health costs of pSS are substantial. This study aims to determine how symptom burden, disease activity and demographics associate with HRQoL longitudinally over a median of 24-month follow-up period in pSS.

Methods: Longitudinal EuroQoL-5 dimension (EQ-5D)-3L data from the Newcastle pSS cohort (n = 377) were evaluated using a survival analysis strategy. Kaplan-Meier and Cox proportional hazards analysis were performed using baseline Newcastle Sjogren's Stratification Tool (NSST) subgroup, EULAR Sjogren's Syndrome Patient Reported Index (ESSPRI), EULAR Sjogren's Syndrome Disease Activity Index (ESSDAI), disease duration, age and sex as covariates including polypharmacy and comorbidity score, where data were available (n = 191).

Results: Of the 377 pSS participants analysed in this study, 16% experienced a decline in HRQoL to a health state comparable to or worse than death. NSST subgroup and ESSPRI score had a significant relationship with time to 'EQ-5D event', whereas baseline ESSDAI, age, disease duration and sex did not.

Conclusion: In pSS, symptom burden and to a great extent NSST subgroup, rather than systemic disease activity, has a significant relationship with HRQoL longitudinally. Improvements in symptom burden have the potential to produce significant impacts on long-term HRQoL in pSS.

Keywords: Sjogren's; health-related quality of life; longitudinal.

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Conflict of interest statement

None of the authors has competing interests related to the submitted work. Wan‐Fai Ng reports personal fees from GlaxoSmithKline, MedImmune, Novartis and BMS; personal fees and grant support from Abbvie and grant support from Resolves Therapeutics, Nascient, outside of the submitted work.

Figures

Fig. 1
Fig. 1
Kaplan–Meier estimator curves showing time to ‘EQ‐5D event’ data between four symptom burden groups. ‘EQ‐5D event’ = EQ‐5D ≤0. Strata = NSST subgroup, n = 377. EQ‐5D, EuroQoL‐5 dimension.
Fig. 2
Fig. 2
Graphical summaries of four Cox proportional hazards models (a–d). The estimated HR, 95% CI of the HR and p‐value are shown for each covariate in each model. The models show the impact of (a) the NSST subgroup, (b) disease activity (ESSDAI) and (c) ESSPRI, on risk of ‘EQ5D event’ occurrence using demographic covariates age, sex, disease duration, polypharmacy score and CCI. (d) This model includes the individual symptom scores used in NSST stratification. CCI, Chronic Condition Indicator ; CI, confidence interval; DDF, dryness dominant with fatigue; HADS, Hospital Anxiety and Depression Scale; HR, hazard ratio; HSB, high symptom burden; LSB, low symptom burden; PDF, pain dominant with fatigue.
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