scholarly journals Changes in pulmonary function and patient-reported outcomes during COVID-19 recovery: a longitudinal, prospective cohort study

2021 ◽  
pp. 00243-2021
Author(s):  
Aditi S. Shah ◽  
Min Hyung Ryu ◽  
Cameron J Hague ◽  
Darra T. Murphy ◽  
James C. Johnston ◽  
...  
Keyword(s):  
Pulmonary Function ◽  
Symptom Onset ◽  
Prospective Cohort ◽  
Pulmonary Function Tests ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Considerable Proportion ◽  
Patient Reported ◽  
Underlying Mechanisms ◽  
Over Time

ObjectivesTo compare respiratory and patient-reported outcome measures (PROMs) between 3 and 6 months after symptom onset and to identify features that predict these changes.MethodsThis is a consecutive prospective cohort of 73 patients who were hospitalised with COVID-19. We evaluated the changes in pulmonary function tests (PFTs) and PROMs between 3 and 6 months and then investigated the associations between outcomes (change in diffusing capacity for carbon monoxide of the lung (DLCO), dyspnea, and quality of life (QOL)) and clinical and radiological features.ResultsThere was improvement in forced vital capacity (FVC), total lung capacity (TLC), and DLCO between 3 and 6 months by 3.25%, 3.82% and 5.69% respectively; however, there was no difference in PROMs. Reticulation and total CT scores were associated with lower DLCO %-predicted at 6 months (coefficients; −8.7 and −5.3 respectively). The association between radiological scores and DLCO were modified by time, with the degree of association between ground glass and DLCO having decreased markedly over time. There was no association between other predictors and change in dyspnea or QOL over time.ConclusionsThere is improvement in pulmonary function measurements between 3 and 6 months after COVID-19 symptom onset; however, PROMs did not improve. A higher reticulation and total CT score are negatively associated with DLCO, but this association is attenuated over time. Lastly, there is a considerable proportion of patients with unexplained dyspnea at 6 months, motivating further research to identify the underlying mechanisms.

scholarly journals Patient-reported outcome measures after COVID-19: a prospective cohort study

2020 ◽  
Vol 56 (5) ◽  
pp. 2003276 ◽  
Author(s):  
Alyson W. Wong ◽  
Aditi S. Shah ◽  
James C. Johnston ◽  
Christopher Carlsten ◽  
Christopher J. Ryerson
Keyword(s):  
Cohort Study ◽  
Outcome Measures ◽  
Prospective Cohort Study ◽  
Prospective Cohort ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Patient‐reported outcome measures ( PROMs ): making sense of individual PROM scores and changes in PROM scores over time

Nephrology ◽  
2020 ◽  
Author(s):  
Esmee M. Willik ◽  
Caroline B. Terwee ◽  
Willem Jan W. Bos ◽  
Marc H. Hemmelder ◽  
Kitty J. Jager ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Making Sense ◽  
Patient Reported ◽  
Over Time

scholarly journals A Systematic Review of Patient-Reported Outcome Measures Assessing Body Image Disturbance in Patients with Head and Neck Cancer

2019 ◽  
Vol 160 (6) ◽  
pp. 941-954 ◽  
Author(s):  
Mark A. Ellis ◽  
Katherine R. Sterba ◽  
Emily A. Brennan ◽  
Stacey Maurer ◽  
Elizabeth G. Hill ◽  
...  
Keyword(s):  
Systematic Review ◽  
Body Image ◽  
Head And Neck Cancer ◽  
Head And Neck ◽  
Treatment Strategies ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Body Image Disturbance ◽  
Patient Reported ◽  
Over Time

Objective To synthesize published literature describing the severity of body image disturbance (BID) in patients with head and neck cancer (HNC) over time, its psychosocial and functional associations, and treatment strategies as assessed by patient-reported outcome measures (PROMs). Data Source PubMed/MEDLINE, Scopus, PsycINFO, Web of Science, and Google Scholar. Review Methods A systematic review of the English-language literature was performed to identify studies of BID in patients with HNC using psychometrically validated PROMs to assess (1) severity of BID over time, (2) psychosocial and functional associations, and (3) management strategies. Results A total of 17 studies met inclusion criteria. BID was assessed via 10 different PROMs, none of which were HNC-specific measures of BID. Two of 2 longitudinal studies (100%) reported that BID improved from pretreatment to posttreatment, and 2 of 3 longitudinal studies (67%) showed that the severity of BID decreased over time as survivors got further out from treatment. Seven of 17 studies (41%) described negative functional and psychosocial associations with BID, although study methodology limited conclusions about cause and effect. None of the studies assessing interventions to manage BID (0/2, 0%) demonstrated an improvement in BID relative to control. Conclusion BID in patients with HNC has negative functional and psychosocial associations and lacks evidence-based treatment. Research is limited by the lack of an HNC-specific BID PROM. Further research should address knowledge gaps related to the lack of an HNC-specific BID PROM, longitudinal course of BID in patients with HNC, confusion with regards to risk factors and outcomes, and lack of prevention and treatment strategies.

Diagnostic delay of more than 6 months contributes to poor radiographic and functional outcome in psoriatic arthritis

2014 ◽  
Vol 74 (6) ◽  
pp. 1045-1050 ◽  
Author(s):  
Muhammad Haroon ◽  
Phil Gallagher ◽  
Oliver FitzGerald
Keyword(s):  
Psoriatic Arthritis ◽  
Symptom Onset ◽  
Disease Onset ◽  
Diagnostic Delay ◽  
Health Assessment ◽  
Lag Time ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Joint Erosions

Objectives(1) To investigate the demographic and clinical characteristics contributing to the delay from symptom onset to the first visit to a rheumatologist; (2) to compare clinical, radiographic and patient-reported outcome measures of those who saw a rheumatologist early in their disease course with those who were diagnosed later.MethodsAll psoriatic arthritis (PsA) patients, fulfilling CASPAR criteria, with an average disease duration of >10 years were invited for detailed clinical evaluation. The total lag time from symptom onset to their first rheumatological encounter was studied. The data were extracted from the referral letters and medical records. Patients were classified as early consulters or late consulters depending on whether they were seen by a rheumatologist within or beyond 6 months of symptom onset.Results283 PsA patients were studied. Median lag time from the disease onset to the first rheumatological assessment of the cohort was 1.00 years (IQR 0.5–2). 30% (n=86), 53% (n=149) and 71% (n=202) of the cohort were seen by a rheumatologist within 6 months, 1 and 2 years of symptom onset, respectively. PsA patients with low education status (OR 2.09, p=0.02) and Body Mass Index (OR 0.92, p=0.01) were significantly more likely to have a diagnostic delay of >2 years. On multiple stepwise regression analysis, the model predicted significant association of late consulters with the development of peripheral joint erosions (OR 4.25, p=0.001) and worse Health Assessment Questionnaire scores (OR 2.2, p=0.004).ConclusionsEven a 6-month delay from symptom onset to the first visit with a rheumatologist contributes to the development of peripheral joint erosions and worse long-term physical function.

Pulmonary Function Tests May Better Predict Dyspnea-Severity in Patients with Subglottic Stenosis Compared to Clinician-Reported Stenosis

2021 ◽  
pp. 000348942110452
Author(s):  
Neel K. Bhatt ◽  
Valerie P. Huang ◽  
Caitlin Bertelsen ◽  
William Z. Gao ◽  
Lindsay S. Reder ◽  
...  
Keyword(s):  
Pulmonary Function ◽  
Partial Correlation ◽  
Outcome Measure ◽  
Pulmonary Function Tests ◽  
Upper Airway ◽  
Patient Reported Outcome ◽  
Subglottic Stenosis ◽  
Function Tests ◽  
Patient Reported ◽  
Varied Degree

Objective: Patients with subglottic stenosis (SGS) present with varied degree of breathing complaints. The dyspnea index (DI) is a 10-question patient-reported outcome measure designed to measure the severity of upper airway obstruction. We set out to determine whether pulmonary function tests or clinician-reported degree of stenosis best predicted DI scores. Methods: Thirty patients with SGS were retrospectively reviewed over a 6-year period. One visit from each patient was included. Data including peak expiratory flow rate (PEFR), body-mass index (BMI), clinician-reported degree of stenosis, and DI scores were reviewed. Multiple linear regression was performed to determine how degree of stenosis and PEFR % predicted the variation in DI score. Results: PEFR % better predicted DI scores compared to degree of stenosis (partial correlation −0.32 vs 0.17). After stepwise elimination, PEFR % remained in the regression and was significantly associated with DI scores ( F[1, 29] = 9.38, P = .005). BMI did not demonstrate a linear relationship with DI scores and was not included in the regression ( r = −.02). The PEFR % unstandardized coefficient was −0.25 (95% CI: −0.42 to −0.08, P = .005). The model predicts that a 4% increase in the PEFR % results in a 1-point decrease in the DI score (95% CI: −1.68 to −0.32). Conclusion: This study suggests that pulmonary function tests may be a better in-office measure to substantiate the severity of symptoms in patients with SGS.

scholarly journals The Use of Patient-Reported Outcome Measures in Phase I Oncology Clinical Trials

Oncology ◽  
2021 ◽  
pp. 1-10
Author(s):  
Robert L. Coleman ◽  
J. Thaddeus Beck ◽  
Joaquina C. Baranda ◽  
Ira Jacobs ◽  
Karen E. Smoyer ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Phase I ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Oncology Clinical Trials ◽  
Changes Over Time ◽  
Over Time

<b><i>Objective:</i></b> To investigate patient-reported outcome (PRO) usage in phase I oncology clinical trials, including types of PRO measures and changes over time. <b><i>Methods:</i></b> We analyzed ClinicalTrials.gov records of phase I oncology clinical trials completed by December 2019. <b><i>Results:</i></b> Of all eligible trials, 2.3% (129/5,515) reported ≥1 PRO, totaling 181 instances of PRO usage. PRO usage increased over time, from 0.6% (trials initiated before 2000) to 3.4% (trials starting between 2015 and 2019). The most common PRO measures were unspecified (29%), tumor-specific (24%), and generic cancer (19%). <b><i>Conclusion:</i></b> Although uncommon in phase I oncology clinical trials, PRO usage is increasing over time. PRO measures were often unspecified on ClinicalTrials.gov, suggesting that more precise reporting and standardization are needed.

scholarly journals P494 Can Patients Monitor Response To Ustekinumab In The Real World?

2021 ◽  
Vol 15 (Supplement_1) ◽  
pp. S477-S478
Author(s):  
A J Walsh ◽  
L Matini ◽  
A Kormilitzin ◽  
J Wilson ◽  
S Lyden ◽  
...  
Keyword(s):  
Abdominal Pain ◽  
Real Time ◽  
Decision Support Tool ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Support Tool ◽  
Patient Reported ◽  
Reported Data ◽  
Over Time

Abstract Background Real time monitoring of patients with Crohn’s disease (CD) gives us the opportunity to examine disease trajectory. We have demonstrated the feasibility of using a monitoring platform with patient reported data, collected prospectively and routinely in clinical practice. The question is whether it can be used for specific drugs Methods TrueColours-IBD (TC-IBD)is a real time, web based platform that through email prompts linked to questionnaires, collects longitudinal patient reported outcome measures (for CD, symptoms measured by Harvey Bradshaw Index (HBI) and quality of life by IBD Control-8). It is routinely used by &gt;2000 patients in Oxford. This study examined 114 patients with Crohn’s: 45 males (median age 36, IQR 28–51) and 69 females (median age 34.8, IQR 28–47), treated with ustekinumab for a maximum of 16 months (range -2 months to 14 months). A linear mixed-effects model was used to approximate longitudinal trends of HBI and IBD Control-8. 3 individual items of the HBI scale (general well-being, abdominal pain & stool frequency) were also assessed. The TC-IBD platform has the capacity to analyse and show patients’ data automatically, using customised models and algorithms through the feedback loop (Fig 1). Model coefficients, intercept and slope were estimated using the restricted maximum likelihood (REML) approach. The intercept corresponds to the expected cohort mean value of the scale (e.g. HBI, IBD Control-8) at baseline (time zero) and the slope describes the rate of the change over time Results The models’ coefficients, the intercept and slope of both HBI and IBD Control-8 scales were statistically significant and are summarised in Table 1 with confidence intervals. Both linear trends (slopes) describing HBI (p&lt;0.001) and IBD Control-8 (p&lt;0.001) confirmed improvements for patients. The bowel movement component of the HBI dominated over general well-being and abdominal pain, while keeping a similar downward trend over time ( Fig 2 and Fig 3a,b) Conclusion Patient reported data through the TC-IBD platform can be used for statistical analyses and continuous monitoring of drug effect over time. This analysis is limited by a lack of comparator group, but the models may be used with the TrueColours platform as a decision support tool for other drugs

scholarly journals Testing the Responsiveness of and Defining Minimal Important Difference (MID) Values for the CARe Burn Scales: Patient-Reported Outcome Measures to Assess Quality of Life for Children and Young People Affected by Burn Injuries, and Their Parents/Caregivers

2021 ◽  
Vol 2 (4) ◽  
pp. 249-280
Author(s):  
Catrin Griffiths ◽  
Philippa Tollow ◽  
Danielle Cox ◽  
Paul White ◽  
Timothy Pickles ◽  
...  
Keyword(s):  
Young People ◽  
Burn Injury ◽  
Minimal Important Difference ◽  
Patient Reported Outcome Measures ◽  
Young Person ◽  
Patient Reported Outcome ◽  
Change Over Time ◽  
Patient Reported ◽  
Assess Quality ◽  
Over Time

The CARe Burn Scales are a portfolio of burn-specific PROMs for people affected by burns, including a Child Form (for children < 8 years (parent-proxy)), a Young Person Form (for young people aged 8–17 years), an Adult Form, and a Parent Form (for parents/carers of children aged 0–17 years). This study aimed to determine the responsiveness and minimal important difference (MID) values of the three scales developed for use in paediatric burn services and research. Participants were recruited by 15 UK Burn Services. Participants completed the appropriate CARe Burn Scale and a set of appropriate comparison validated measures, at three time points: 4 weeks (T1), 3 months (T2) and 6 months (T3) post-burn injury. Spearman’s correlation analysis and effect sizes based on Cohen’s d thresholds were reported and MID values were calculated. At baseline, 250 participants completed the Child Form, 69 completed the Young Person Form, and 320 completed the Parent Form. A total of 85–92% of participants were retained at follow up. The tested CARe Burn Scales were all responsive to change over time. MID values were created for all subscales and ranged from 2 to 11 for the Child Form, 3 to 14 for the Young Person Form and 3 to 10 for the Parent Form. The CARe Burn Scales for children, young people and parents are responsive to change over time. The scales are freely available for clinical and research use.

No Clinically Meaningful Differences in 1-Year Patient-Reported Outcome Measures between Hip Resurfacing and Total Hip Arthroplasty: An Age-Matched Prospective Cohort Study

2021 ◽  
Author(s):  
Marcelo Siqueira ◽  
Keyword(s):  
Total Hip Arthroplasty ◽  
Outcome Measures ◽  
Hip Arthroplasty ◽  
Prospective Cohort ◽  
Patient Reported Outcome Measures ◽  
Hip Resurfacing ◽  
Patient Reported Outcome ◽  
Total Hip ◽  
Patient Reported

AbstractThis study compared patient-reported outcome measures (PROMs), readmissions, and reoperations between hip resurfacing (HR) and total hip arthroplasty (THA) in a matched prospective cohort. Between 2015 and 2017, 4,268 patients underwent HR or THA at a single institution. A prospective cohort of 2,147 patients were enrolled (707 HRs, 1,440 THAs). PROMs were collected at baseline and 1-year follow-up. Exclusion criteria: females (n = 2,008), inability/refusal to complete PROMs (n = 54), and diagnosis other than osteoarthritis (n = 59). Each HR patient was age-matched to a THA patient. Multivariate regression models were constructed to control for race, body mass index, education, smoking status, Charlson Comorbidity Index, mental health, and functional scores. A significance threshold was set at p = 0.017. A total of 707 HRs and 707 THAs were analyzed and 579 HRs (81.9%) and 490 THAs (69.3%) were followed up at 1 year. There was no statistically significant difference for Hip Injury and Osteoarthritis Outcomes Score (HOOS) Pain subscale (p = 0.129) and HOOS-Physical Function Shortform (HOOS-PS) (p = 0.03). HR had significantly higher median University of California in Los Angeles (UCLA) activity scores (p = 0.004). Ninety-day readmissions for HR and THAs were 1.8 and 3.5%, respectively (p = 0.06), and reoperations at 1 year were 1.2 and 2.3%, respectively (p = 0.24). For male patients, differences in medians for UCLA activity scores were 0.383 points, which were statistically significant but may not be clinically relevant. No differences exist in 90-day readmissions, reoperations, and HOOSpain and HOOS-PS scores. Because patients undergoing HR are advised to return to full activity at 1-year postoperative, follow-up is required. Metal ion levels were not obtained postoperatively for either group.

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