A new indicator to measure discordance between patient reported outcomes and traditional disease activity holds promise to advance care trajectories improve care in patients with early Rheumatoid Arthritis

ABSTRACTObjectiveTo unravel disease impact in early RA patients by separately quantifying patient reported (PRF), clinical (CF) and laboratory (LF) factors. We put forward a new indicator, the discordance score (DS), for early identification and prediction of unmet patient outcomes in terms of future achievement of sustained remission and RA-related quality of life (QoL).MethodsWe obtained factor scores via factor analysis in the CareRA trial, then calculated the DS between PRF and the mean of the other scores. We computed the improvement from baseline to week 104 (%) and area-under-the-curve (AUC) across time-points per factor score and compared these between patients achieving or not achieving sustained (week 16 to 104) remission (DAS28CRP<2.6) with ANOVA. Logistic and linear regressions respectively were used to predict SR based on previous factor and discordance scores, and QoL at year 1 and 2 based on DS at week 16.ResultsPRF, CF and LF scores improved rapidly within 8 weeks. In patients achieving SR; PRF improved 57%, CF 90% and LF 27%, compared to 32% PRF (p=0.13), 77% CF (p<0.001) and 9% LF (p=0.36) score improvement in patients not achieving SR. Patients achieving SR had an AUC of 15.7, 3.4 and 4.8 for PRF, CF and LF respectively, compared to 33.2, 10.1, and 7.2 in participants not achieving SR (p<0.001 for all). Early factor and discordance scores were associated with later stage factor scores as well as QoL and PRF scores predicted SR (p<0.005 for PRF and DS).ConclusionsAll factor scores improved rapidly, especially in patients achieving SR. Patient-reported burden improved less extensively. Discordance scores could help in predicting the need for additional non-pharmacological interventions to achieve SR and decrease disease impact.KEY MESSAGESWhat is already known about this subject?Early and intensive RA drug-treatment using disease activity as a target allows rapid disease control and prevents joint destruction.Including pain, fatigue and physical function when assessing patients with early RA broadens the evaluation of disease impact.What does this study add?Leveraging patient reported outcomes (pain, fatigue and physical function) and traditional disease activity measures, we introduce a new indicator (named discordance score) for unraveling disease impact and treatment efficacy.We show how the discordance score stands for current unmet patient reported outcomes and could be used to predict future sustained disease contol and quality of life (1 and 2 years after baseline).We demonstrate this effect both in patients with and without sustained remissionHow might this impact on clinical practice or future developments?The earlier detection of unmet needs despite good disease control could allow to perform timely interdisciplinary interventions other than medication adaptations and could promote psychosocial wellbeing for patients.

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Secukinumab improves patient-reported outcomes in subjects with active psoriatic arthritis: results from a randomised phase III trial (FUTURE 1)

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2015-209055 ◽

2016 ◽

Vol 76 (1) ◽

pp. 203-207 ◽

Cited By ~ 55

Author(s):

Vibeke Strand ◽

Philip Mease ◽

Laure Gossec ◽

Ori Elkayam ◽

Filip van den Bosch ◽

...

Keyword(s):

Quality Of Life ◽

Psoriatic Arthritis ◽

Disease Activity ◽

Patient Reported Outcomes ◽

Life Quality ◽

Phase Iii ◽

Patient Reported ◽

Related Quality ◽

Global Disease Activity

ObjectiveTo evaluate the effect of secukinumab on patient-reported outcomes (PROs) in subjects with active psoriatic arthritis (PsA) in the FUTURE 1 study.MethodsSubjects were randomised 1:1:1 to receive intravenous (i.v.) secukinumab 10 mg/kg at weeks 0, 2 and 4 followed by subcutaneous secukinumab 150 or 75 mg every 4 weeks or matching placebo until week 24.ResultsAt week 24, subjects receiving secukinumab i.v.→150 mg or i.v.→75 mg reported greater least squares mean changes from baseline than those receiving placebo in patient global assessment of disease activity (−20.6 and −20.0 vs −7.4, respectively), patient assessment of pain (−20.8 and −20.4 vs −6.7), psoriatic arthritis quality of life (−3.5 and −3.2 vs −0.4), Dermatology Life Quality Index (−8.8 and −7.9 vs 0.7); p<0.0001 vs placebo for both secukinumab groups for above PROs and Functional Assessment of Chronic Illness Therapy-Fatigue (6.74 (p<0.05 vs placebo) and 6.03 vs 4.00); all of which well exceeded minimum clinically important differences.ConclusionsIn subjects with PsA, secukinumab treatment resulted in clinically meaningful improvements in global disease activity, pain, generic and disease-specific measures of health-related quality of life and fatigue.Trial registration numberNCT01392326; Results.

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Health-related quality of life in gastric cancer: Assessing pooled international data from a patient-reported-outcomes health status questionnaire

PsycEXTRA Dataset ◽

10.1037/e686862011-001 ◽

2011 ◽

Author(s):

Scott M. Debb

Keyword(s):

Quality Of Life ◽

Gastric Cancer ◽

Health Status ◽

Patient Reported Outcomes ◽

Health Related Quality ◽

Patient Reported ◽

Related Quality ◽

Health Related ◽

International Data

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P048 QUALITY OF LIFE AND OTHER PATIENT REPORTED OUTCOMES IN PATIENTS WITH POUCHITIS

Gastroenterology ◽

10.1053/j.gastro.2019.11.251 ◽

2020 ◽

Vol 158 (3) ◽

pp. S107

Author(s):

Edward Barnes ◽

Millie Long ◽

Laura Raffals ◽

Xian Zhang ◽

Anuj Vyas ◽

...

Keyword(s):

Quality Of Life ◽

Patient Reported Outcomes ◽

Patient Reported

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Quality of life, effectiveness and patient reported outcomes of antiemetic prophylaxis with NEPA within the German NIS AkyPRO: post-hoc analysis of patients receiving carboplatin-based chemotherapy

10.1055/s-0040-1710726 ◽

2020 ◽

Author(s):

J Schilling ◽

R Lorenz ◽

D Rezek ◽

L Bauer ◽

D Hornung ◽

...

Keyword(s):

Quality Of Life ◽

Patient Reported Outcomes ◽

Life Effectiveness ◽

Post Hoc Analysis ◽

Antiemetic Prophylaxis ◽

Patient Reported ◽

Post Hoc

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A three month interim analysis of quality of life in patients with relapsing remitting multiple sclerosis in the UK: the Patient Reported Outcomes with Fingolimod in Local Experience (PROFILE) study

10.26226/morressier.59a3e8b7d462b8028d895a36 ◽

2017 ◽

Author(s):

Michel Kroes

Keyword(s):

Quality Of Life ◽

Interim Analysis ◽

Patient Reported Outcomes ◽

Local Experience ◽

Patient Reported ◽

Relapsing Remitting ◽

The Uk ◽

Relapsing Remitting Multiple Sclerosis ◽

Profile Study

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Understanding quality of life and treatment history of patients with Bertolotti syndrome compared with lumbosacral radiculopathy

Journal of Neurosurgery Spine ◽

10.3171/2019.2.spine1953 ◽

2019 ◽

Vol 31 (2) ◽

pp. 222-228 ◽

Cited By ~ 1

Author(s):

Joshua L. Golubovsky ◽

Arbaz Momin ◽

Nicolas R. Thompson ◽

Michael P. Steinmetz

Keyword(s):

Quality Of Life ◽

Mental Health ◽

Propensity Score ◽

Disc Herniation ◽

Symptom Onset ◽

Patient Reported Outcomes ◽

Lumbosacral Radiculopathy ◽

Patient Reported ◽

Age And Sex

OBJECTIVEBertolotti syndrome is a rare spinal condition that causes low-back pain due to a lumbosacral transitional vertebra (LSTV), which is a pseudoarticulation between the fifth lumbar transverse process and the sacral ala. Bertolotti syndrome patients are rarely studied, particularly with regard to their quality of life. This study aimed to examine the quality of life and prior treatments in patients with Bertolotti syndrome at first presentation to the authors’ center in comparison with those with lumbosacral radiculopathy.METHODSThis study was a retrospective cohort analysis of patients with Bertolotti syndrome and lumbosacral radiculopathy due to disc herniation seen at the authors’ institution’s spine center from 2005 through 2018. Diagnoses were confirmed with provider notes and imaging. Variables collected included demographics, diagnostic history, prior treatment, patient-reported quality of life metrics, and whether or not they underwent surgery at the authors’ institution. Propensity score matching by age and sex was used to match lumbosacral radiculopathy patients to Bertolotti syndrome patients. Group comparisons were made using t-tests, Fisher’s exact test, Mann-Whitney U-tests, Cox proportional hazards models, and linear regression models where variables found to be different at the univariate level were included as covariates.RESULTSThe final cohort included 22 patients with Bertolotti syndrome who had patient-reported outcomes data available and 46 propensity score–matched patients who had confirmed radiculopathy due to disc herniation. The authors found that Bertolotti syndrome patients had significantly more prior epidural steroid injections (ESIs) and a longer time from symptom onset to their first visit. Univariate analysis showed that Bertolotti syndrome patients had significantly worse Patient-Reported Outcomes Measurement Information System (PROMIS) mental health T-scores. Adjustment for prior ESIs and time from symptom onset revealed that Bertolotti syndrome patients also had significantly worse PROMIS physical health T-scores. Time to surgery and other quality of life metrics did not differ between groups.CONCLUSIONSPatients with Bertolotti syndrome undergo significantly longer workup and more ESIs and have worse physical and mental health scores than age- and sex-matched patients with lumbosacral radiculopathy. However, both groups of patients had mild depression and clinically meaningful reduction in their quality of life according to all instruments. This study shows that Bertolotti syndrome patients have a condition that affects them potentially more significantly than those with lumbosacral radiculopathy, and increased attention should be paid to these patients to improve their workup, diagnosis, and treatment.

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