scholarly journals Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis

2018 ◽  
Vol 45 (5) ◽  
pp. 638-647 ◽  
Author(s):  
Prashanth Sunkureddi ◽  
Stephen Doogan ◽  
John Heid ◽  
Samir Benosman ◽  
Alexis Ogdie ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Functional Impairment ◽  
General Health ◽  
Barriers To Treatment ◽  
Treatment Access ◽  
Patient Narratives ◽  
Patient Reported ◽  
Online Sources ◽  
Pro Instruments ◽  
Role Activity

Objective.To evaluate the types of experiences and treatment access challenges of patients with psoriatic arthritis (PsA) using self-reported online narratives.Methods.English-language patient narratives reported between January 2010 and May 2016 were collected from 31 online sources (general health social networking sites, disease-focused patient forums, treatment reviews, general health forums, mainstream social media sites) for analysis of functional impairment and 40 online sources for assessment of barriers to treatment. Using natural language processing and manual curation, patient-reported experiences were categorized into 6 high-level concepts of functional impairment [social, physical, emotional, cognitive, role activity (SPEC-R), and general] and 6 categories to determine barriers to treatment access (coverage ineligibility, out-of-pocket cost, issues with assistance programs, clinical ineligibility, formulary placement/sequence, doctor guidance). The SPEC-R categorization was also applied to 3 validated PsA patient-reported outcome (PRO) instruments to evaluate their capacity to collect lower-level subconcepts extracted from patient narratives.Results.Of 15,390 narratives collected from 3139 patients with PsA for exploratory analysis, physical concepts were the most common (81.5%), followed by emotional (50.7%), cognitive (20.0%), role activity (8.1%), and social (5.6%) concepts. Cognitive impairments and disease burden on family and parenting were not recorded by PsA PRO instruments. The most commonly cited barriers to treatment were coverage ineligibility (51.6%) and high out-of-pocket expenses (31.7%).Conclusion.Patients often discussed physical and emotional implications of PsA in online platforms; some commonly used PRO instruments in PsA may not identify cognitive issues or parenting/family burden. Nearly one-third of patients with PsA reported access barriers to treatment.

scholarly journals Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study

2021 ◽  
Author(s):  
Nikunj Patel ◽  
Joshua Maher ◽  
Xandra Lie ◽  
Chad Gwaltney ◽  
Afsaneh Barzi ◽  
...  
Keyword(s):  
Hepatocellular Carcinoma ◽  
Drug Development ◽  
Conceptual Model ◽  
Patient Experience ◽  
Outcome Measurement ◽  
Qualitative Interviews ◽  
Patient Reported Outcome ◽  
Weight Changes ◽  
Patient Reported ◽  
Pro Instruments

Abstract Purpose This study aimed to elucidate the patient experience of hepatocellular carcinoma (HCC) to guide patient-centered outcome measurement in drug development. Methods Patients with HCC participated in qualitative interviews to elicit disease-related signs/symptoms and impacts, using discussion guides developed from literature searches and discussions with oncologists. Interview participants rated the disturbance of their experiences (0–10 scale). A conceptual model was developed and mapped against patient-reported outcome (PRO) instruments identified from database reviews. Results Interviews were conducted with 25 individuals with HCC (68% were men; median age: 63 years; 12% Barcelona clinic liver cancer (BCLC) stage A; 32% stage B; and 56% stage C) in the USA. Fifty-one HCC-related concepts were identified from the interviews and were grouped into eight sign/symptom categories (eating behavior/weight changes; extremities [arms, legs]; fatigue and strength; gastrointestinal; pain; sensory; skin; other) and four impact categories (emotional; physical; cognitive function; other) for the conceptual model. The most prevalent and disturbing experiences across the disease stages were fatigue/lack of energy and emotional impacts such as frustration, fear, and depression. Abdominal pain and skin-related issues were particularly common and disturbing in individuals with HCC stage C. The EORTC QLQ-C30 and HCC18 were identified as commonly used PRO instruments in HCC studies and captured the relevant signs/symptoms associated with the patient experience. Conclusion Patients with HCC reported a range of signs/symptoms and impacts that negatively affect daily functioning and quality of life. Including PRO measures in HCC clinical trials can provide meaningful patient perspectives during drug development.

Psychometric properties of patient reported outcome (PRO) instruments in patients with small cell lung cancer (SCLC) in RESILIENT part 1.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24027-e24027
Author(s):  
Jaba Kokhreidze ◽  
Veleka Allen ◽  
Cristina Ivanescu ◽  
Xiaopan Valerie Yao ◽  
Bin Zhang ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Construct Validity ◽  
Psychometric Properties ◽  
Internal Consistency ◽  
Life Questionnaire ◽  
Retest Reliability ◽  
Patient Reported ◽  
Eortc Qlq ◽  
Test Retest Reliability ◽  
Pro Instruments

e24027 Background: The ongoing two-part phase 2/3 RESILIENT study (NCT03088813) is investigating the efficacy and safety of liposomal irinotecan monotherapy in patients with SCLC who have progressed on or after first line platinum-based chemotherapy. This exploratory analysis from RESILIENT part 1 was conducted to confirm the psychometric properties of established PRO instruments that had not previously been validated in patients with SCLC. Methods: Patients completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ) Core 30 (C30) and the EORTC QLQ Lung Cancer 13 (LC13) before treatment assignment (baseline), every 6 weeks thereafter, at treatment discontinuation and at the 30-day follow-up visit. Psychometric methods included descriptive statistics (items and scales), correlations (item-to-item and item-to-total), internal consistency (Cronbach’s α), test-retest reliability (intraclass correlation coefficient [ICC], two-way random effects model), construct validity and sensitivity to change. The analysis included patients who received at least one dose of study drug and completed at least one PRO assessment. Results: Thirty patients were enrolled in RESILIENT part 1 and included in the analysis. At baseline, 68% of patients reported ‘not severe’ or ‘mild’ symptoms. Floor effects (i.e. more than 25% of responses of ‘not at all’) were observed for several of the functioning/impact and symptom scales of the EORTC QLQ C30 and LC13. Moderate to strong correlations were found among most questionnaire items within their respective scales. Acceptable evidence for internal consistency and good test-retest reliability were observed. Selected results for the EORTC QLQ LC13, including dyspnea scales, are shown in the Table. The magnitude of correlations among PRO instruments supported evidence for convergent validity in this sample. Conclusions: In RESILIENT part 1, patients experienced low and tolerable symptoms at enrollment, limiting the potential for further improvement. Overall, these PRO instruments had acceptable psychometric properties (e.g. construct validity, reliability and ability to detect change) in this sample. However, these analyses should be repeated in a larger sample using data from RESILIENT part 2. Clinical trial information: NCT03088813. [Table: see text]

Joint functional impairment and thermal alterations in patients with Psoriatic Arthritis: A thermal imaging study

2015 ◽  
Vol 102 ◽  
pp. 86-91 ◽  
Author(s):  
A. Capo ◽  
E. Ismail ◽  
D. Cardone ◽  
E. Celletti ◽  
M. Auriemma ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Functional Impairment ◽  
Thermal Imaging ◽  
Imaging Study

scholarly journals DAPSA and ultrasound show different perspectives of psoriatic arthritis disease activity: results from a 12-month longitudinal observational study in patients starting treatment with biological disease-modifying antirheumatic drugs

RMD Open ◽  
2018 ◽  
Vol 4 (2) ◽  
pp. e000765 ◽  
Author(s):  
Silva Pukšić ◽  
Pernille Bolton-King ◽  
Joseph Sexton ◽  
Brigitte Michelsen ◽  
Tore K Kvien ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Disease Activity ◽  
Clinical Assessment ◽  
Global Assessment ◽  
Activity Index ◽  
Power Doppler ◽  
Disease Activity Index ◽  
Patient Reported Outcome Measures ◽  
Joint Disease ◽  
Patient Reported

ObjectivesDisease Activity index for PSoriatic Arthritis (DAPSA) (sum score 68/66 tender/swollen joint counts (68TJC/66SJC), patient’s global assessment, pain and C-reactive protein (CRP)) is recommended for clinical assessment of disease activity in patients with psoriatic arthritis (PsA). Ultrasound (US) (grey scale (GS) and power Doppler (PD)) detects inflammation in joints and extra-articular structures. The present objectives were to explore the longitudinal relationships between DAPSA, clinical assessment as well as patient-reported outcome measures (PROMs) with US in patients with PsA initiating biological DMARDs and the associations between DAPSA and US remission.Methods47 patients with PsA were examined at baseline and after 3, 6, 9 and 12 months. Assessments included 68TJC/66SJC, examiner’s global assessment (EGA), PROMs, CRP, erythrocyte sedimentation rate (ESR) and US GS and PD (48 joints, 10 flexor tendons, 14 entheses, 4 bursae). Clinical composite scores and PD sum scores (0=remission) were calculated. Longitudinal associations were explored by generalised estimating equations with linear and logistic regression.ResultsDAPSA was not longitudinally associated to PD. 66SJC, ESR, 28-joint Disease Activity Score, EGA and CRP were longitudinally associated with PD (p<0.001–0.03), whereas the pain-related components of DAPSA (68TJC and pain) as well as PROMs were not associated. At 6–12 months, remission was achieved in 29%–33 % of the patients for DAPSA and 59%–70 % for PD. The association between DAPSA and PD remission was not significant (p=0.33).ConclusionsDAPSA was not associated with US inflammatory findings which indicates that DAPSA and US may assess different aspects of PsA activity.

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