Patient-physician discrepancy in the perception of immune-mediated inflammatory diseases: rheumatoid arthritis, psoriatic arthritis and psoriasis. A qualitative systematic review of the literature

Sacristán, José Antonio; Dilla, Tatiana; Díaz‐Cerezo, Silvia; Gabás‐Rivera, Clara; Aceituno, Susana; Lizán, Luís

doi:10.1371/journal.pone.0234705

Cited by 25 publications

(20 citation statements)

References 46 publications

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“…11 Patient and physician perspectives are known to differ when reporting on disease severity. 27 In line with published data from other longitudinal studies with outpatients, symptoms progression was also heterogeneous. 1,[8][9][10][11] Some symptoms such as "Feverish", "Vomiting", "Confusion", and "Rash" resolved within the first week from randomisation.…”

Section: Discussionsupporting

confidence: 84%

A reliable and valid measure of COVID-19 patient-reported symptoms in outpatients: the Symptoms Evolution of COVID-19 (SE-C19) instrument

Rofail

Griffiths

Flore

et al. 2021

Preprint

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BackgroundThere is no valid and reliable patient self-reported measure assessing symptomology among outpatients with COVID-19. The Symptoms Evolution of COVID-19 (SE-C19) is a self-administered new instrument that includes 23 symptoms, each rated for severity at their worst moment within the last 24 hours. We studied the psychometric properties of SE-C19.MethodsReliability, validity, and sensitivity to change of the SE-C19 were assessed in 657 outpatients with confirmed COVID-19 enrolled in NCT04425629. SE-C19 and Patient Global Impression of Severity (PGIS) were administered daily from baseline (predose at Day 1) to end of study (Day 29).FindingsMost patients (70·0%) were aged ≤50 years and white (85·5%). At baseline, patients reported an average (SD) of 6·6 (3·9) symptoms (ie, rated as at least Mild) with 3·8 (3·3) of these symptoms being rated as Moderate or Severe. By Day 29, most symptoms had resolved; 74·4% of patients reported no symptoms and on average, only 0·6 (SD 1·5) symptoms were reported as at least Mild.Stable patients according to the PGIS showed scores with intraclass correlation values indicating moderate-to-good test-retest reliability (ie, 0·50-0·90). At baseline, 20 item scores (87%) varied significantly across PGIS defined groups supporting the validity of SE-C19.A symptom-resolution endpoint was defined after excluding the item “Sneezing”, due to its low ability to discriminate severity levels, and “Confusion”, “Rash”, and “Vomiting”, due to their low prevalence in this population. Symptoms resolution required complete absence of all remaining items, except “Cough”, “Fatigue”, and “Headache”, which could be Mild or Moderate in severity.InterpretationWe identified 19 items that are valid and reliable to measure disease-related symptoms in COVID-19 outpatients and propose a definition of symptom resolution that could be used in future clinical trials and potentially, also in clinical practice.FundingThis research was funded by Regeneron Pharmaceuticals, Inc.Research in contextEvidence before this studyThe majority of COVID-19-infected patients (>80%) have mild-to-moderate symptoms and are managed at an outpatient setting. Although clinical research has primarily focused on prevention of the disease and the treatment of hospitalised patients, close monitoring of the COVID-19 symptoms and their severity in outpatients is equally important and needed to prevent community transmission. Patient-reported outcome (PRO) instruments are a key method to assess COVID-19 related symptoms and associated burden as these symptoms are best known by the patient and are best measured from the patient perspective. However, a valid and reliable instrument to assess symptom severity and progression among outpatients with COVID-19 is not yet available. This study focuses on the psychometric properties (reliability, validity, and sensitivity to change) of a new recently developed self-administered PRO symptom measure (SE-C19) for COVID-19-positive outpatients.Added value of this studyThis is the first study to systematically examine the psychometric properties of a PRO symptom measure designed for COVID-19 outpatients and it provides a method for identifying symptom resolution among outpatients, which may be useful in clinical research and clinical practice contexts. The SE-C19 instrument is a self-administered questionnaire that assesses the severity of 23 COVID-19-related symptoms. The recall period is 24 hours and the response options include None, Mild, Moderate and Severe. The analyses reported here demonstrate that the SE-C19 is a valid and reliable measure to capture daily COVID-19 symptom severity from the outpatient’s perspective. These psychometric analyses also provide empirical evidence for a method to determine symptoms resolution based on the score of 19 of the SE-19 items; this may be useful not only in clinical trials but also in real-world studies and clinical practice. The 4 items not included in the symptoms resolution endpoint may be useful to clinicians to monitor severe disease.The SE-C19 instrument is relevant for the clinical management of outpatients, as it measures a large number of symptoms that are relevant in the outpatient setting and reflect the heterogeneity of symptom experience, and it is sensitive to the longitudinal changes in the severity of these symptoms.Implications of all the available evidenceThe SE-C19 can be used to monitor COVID-19-related symptoms over time in outpatients. The definition of symptoms resolution established here can be used to inform clinical trial endpoints and may also be useful in clinical practice to aid discussions between healthcare professionals and patients, and inform treatment decisions. Symptoms resolution is based on 19 of the 23 items included in the SE-C19 instrument.

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Section: Discussionsupporting

confidence: 84%

A reliable and valid measure of COVID-19 patient-reported symptoms in outpatients: the Symptoms Evolution of COVID-19 (SE-C19) instrument

Rofail

Griffiths

Flore

et al. 2021

Preprint

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“…5 The discordance between patient and physician assessment of disease has been previously reported in a number of immunemediated inflammatory diseases including PsA. 9 In the study by Beckers et al, 5 some of the discordance is likely to be due to the different components of the PASDAS, DAPSA, and ASDAS instruments. Each of these instruments has slightly different representations of patient and physician components and it is worth considering that impact should be assessed along side activity, such that symptoms from noninflammatory causes can be addressed accordingly.…”

Section: See Peripheral Spa Measures Page XXXmentioning

confidence: 92%

How Should We Measure Peripheral Spondyloarthritis?

Coates

Tillett

2021

J Rheumatol

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“…Moreover, Fusama et al [ 6 ] demonstrated that biologic treatment, which enables clinical, structural and functional remission, improved patients’ QOL. However, Taylor et al [ 7 ] reported that patients’ psychological and social needs were not being met with their current health status because of the large patient–physician discrepancy regarding RA management [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

Factors associated with depressive symptoms in Japanese women with rheumatoid arthritis

Hamasaki

Origuchi

Matsuura

2022

Rheumatology Advances in Practice

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Objectives It has been suggested that patients with rheumatoid arthritis (RA) are more likely to suffer from depression. Therefore, this study identified the factors associated with depressive states in female RA patients to inform future patient care. Methods A self-assessment questionnaire was administered to 150 female RA patients aged 20 years and older regarding their satisfaction with disease activity, pain (measured using the Visual Analogue Scale), self-rated depression scale (SDS), stress content (illness, work, family, difficulty in daily life, appearance, treatment, other), confidence in stress management, and satisfaction (treatment effect, health status, relationships with healthcare professionals). The factors related to depression and the presence of depressive tendencies were investigated. Results Data from 145 patients were analyzed. Eighteen patients (12.4%) showed depressive tendencies according to their SDS scores. Among these patients, SDS scores were positively correlated with disease activity, and with scores on the modified Health Assessment Questionnaire, Visual Analogue Scale for pain, and stress content. SDS was also negatively correlated with patients’ confidence in stress management and health status satisfaction. Conclusion Female RA patients had family problems and various stressors in their daily lives. Nurses need to conduct regular mental health assessments to monitor their self-management status and support them to improve their confidence and satisfaction in coping. To achieve this, it is important for health care teams, involving various healthcare professionals, to collaborate and cooperate.

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Patient-physician discrepancy in the perception of immune-mediated inflammatory diseases: rheumatoid arthritis, psoriatic arthritis and psoriasis. A qualitative systematic review of the literature

Cited by 25 publications

References 46 publications

A reliable and valid measure of COVID-19 patient-reported symptoms in outpatients: the Symptoms Evolution of COVID-19 (SE-C19) instrument

A reliable and valid measure of COVID-19 patient-reported symptoms in outpatients: the Symptoms Evolution of COVID-19 (SE-C19) instrument

How Should We Measure Peripheral Spondyloarthritis?

Factors associated with depressive symptoms in Japanese women with rheumatoid arthritis

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