Validity and test-retest reliability of a patient-reported outcome measure for an outpatient cardiac rehabilitation programme

2019 ◽  
Vol 14 (8) ◽  
pp. 1-13
Author(s):  
Aynsley Cowie ◽  
Mario Hair ◽  
Emma Kerr ◽  
Janet McKay ◽  
Lesley Allan ◽  
...  

Background/Aims This article details how a patient-reported outcome measure (PROM), termed PROM-CR1, was tested for acceptability, validity and test-retest reliability at the end of an outpatient cardiac rehabilitation programme. Methods PROM-CR1 was completed by 138 service users (mean age 66.95 years, range 42–94 years; 115 males, 23 females; with a range of cardiac diagnoses), who used the tool at home twice: once at the end of the outpatient cardiac rehabilitation programme and 1 week later. Results PROM-CR1 demonstrated good acceptability, construct and concurrent validity, and test-retest reliability. The construct validity analysis highlighted that one item required removal from the PROM-CR1. Conclusions A finalised 30-item version of the tool will now be widely disseminated and further evaluated within cardiac rehabilitation clinical practice.

2010 ◽  
Vol 37 (10) ◽  
pp. 2100-2109 ◽  
Author(s):  
KIRSTIE L. HAYWOOD ◽  
ANDREW M. GARRATT ◽  
KELVIN P. JORDAN ◽  
EMMA L. HEALEY ◽  
JONATHAN C. PACKHAM

Objective.There is currently no universally accepted measure of quality of life in ankylosing spondylitis (AS). Our objective was to develop and evaluate a patient-reported outcome measure of quality of life in AS, EASi-QoL.Methods.We used patient interviews, a literature review, and completion of an individualized measure of AS quality of life during clinic-based and pilot surveys to derive questionnaire content. Classical and modern psychometrics were then used to evaluate the questionnaire using data from a large UK-based postal survey of 1000 patients with AS.Results.Data analysis from the interviews and clinic-based and postal surveys produced a 57-item self-completed questionnaire. Fifteen items were removed as a result of patient interviews and the pilot survey. In total, 612 (64.0%) patients responded to the main postal survey. After assessment of data quality, confirmatory factor analysis, and Rasch analysis, 20 items were found to contribute to 4 domains of AS-related quality of life: physical function, disease activity, emotional well-being, and social participation. Item-total correlations ranged from 0.66 to 0.84. Cronbach’s alpha and test-retest reliability estimates were 0.88–0.92 and 0.88–0.93, respectively. Confirmed hypothesized correlations with the AS Quality of Life questionnaire, the Bath AS Disease Activity Index, Bath AS Functional Index, SF-36, EQ-5D, and the Hospital Anxiety and Depression Scale were evidence for the construct validity of the EASi-QoL.Conclusion.The EASi-QoL has good evidence of data quality, internal reliability, test-retest reliability, and content and construct validity, and should be considered for use with patients in routine practice settings and in evaluative studies including clinical trials. Measurement responsiveness and minimal important change are currently being assessed.


2018 ◽  
Vol 25 (1) ◽  
pp. 107327481875660 ◽  
Author(s):  
Ellen M. Lavoie Smith ◽  
Robert Knoerl ◽  
James J. Yang ◽  
Grace Kanzawa-Lee ◽  
Deborah Lee ◽  
...  

Purpose: To test a reduced version—CIPN15—of the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Chemotherapy-Induced Peripheral Neuropathy scale (QLQ-CIPN20) to establish a possible gold-standard patient-reported outcome measure for chemotherapy-induced peripheral neuropathy (CIPN). Methods: Using a prospective, longitudinal, case–control design, patients (n = 121) receiving neurotoxic chemotherapy completed the CIPN15 at baseline and 12 weeks and underwent objective neurological assessment using the 5-item Total Neuropathy Score-Clinical (TNSc). Healthy controls (n = 30) completed the CIPN15 once. Structural validity was evaluated using factor analysis. Because a stable factor structure was not found, a sum score was used to evaluate measures of the CIPN15’s psychometric properties—reliability, validity, sensitivity, and responsiveness—as follows: internal consistency via Cronbach’s α and item–item correlations; test–retest reliability via correlation between 2 CIPN15 scores from each patient; concurrent validity via correlation between CIPN15 and 5-item TNSc scores; contrasting group validity via comparison of CIPN15 scores from patients and healthy controls; sensitivity via descriptive statistics (means, standard deviation, ranges); and responsiveness via Cohen’s d effect size. Results: Most patients received single agent oxaliplatin (33.7%), paclitaxel (21.2%), or more than 1 neurotoxic drug concurrently (29.8%). Factor analysis revealed no stable factor structure. Cronbach’s α for the CIPN15 sum score was 0.91 (confidence interval [CI] = 0.89-0.93). Test–retest reliability was demonstrated based on strong correlations between the 2 scores obtained at the 12-week time point ( r = 0.86; CI = 0.80-0.90). The CIPN15 and 5-item TNSc items reflecting symptoms (not signs) were moderately correlated ( r range 0.57-0.72): concurrent validity. Statistically significant differences were found between patient and healthy control CIPN15 mean scores ( P < .0001): contrasting group validity. All items encompassed the full score range but the CIPN15 linearly converted sum score did not: sensitivity. The CIPN15 was responsive based on a Cohen’s d of 0.52 (CI = 0.25-0.79). Conclusion: The sum-scored CIPN15 is reliable, valid, sensitive, and responsive when used to assess taxane- and platinum-induced CIPN.


2016 ◽  
Vol 30 (12) ◽  
pp. 1229-1241 ◽  
Author(s):  
Emma Patchick ◽  
Andy Vail ◽  
Alison Wood ◽  
Audrey Bowen

Objective: Determine the psychometric properties of PRECiS (Patient Reported Evaluation of Cognitive State): A new patient-centred, patient reported outcome measure for perceived impact of cognitive problems, developed through qualitative work, systematic review and service user consultation. Design: An observational study exploring acceptability, internal consistency, construct validity, inter-rater reliability and test-retest reliability, with opportunistic qualitative data on sensitivity to change. Setting: Home visits in the community. Participants: Stroke survivors with self-reported cognitive difficulties and informal carers. Measures: The 27 item PRECiS was self-completed with support, and proxy completed by informal carers. We collected descriptive cognitive screening test data, and measures of overall stroke impact, mood and activities of daily living to explore construct validity. Results: Data were collected from 159 (visit 1) and 66 (visit 2) stroke survivors and 86 informal carers. PRECiS showed good acceptability (no missing values or floor/ceiling effects, minimal skewness); high internal consistency (α = 0.94, indicative of potential redundancy); with moderate to strong construct correlations in the directions hypothesised (0.40 to 0.74). An intraclass correlation coefficient of 0.85 indicated good test-retest reliability. Where self-reported change had occurred from visit 1 to 2, PRECiS appeared sensitive. Using carers as proxy respondents is not supported by this analysis (inter-rater ICC = 0.43). Conclusions: PRECiS is a patient-centred, practical and reliable measure assessing perceived impact of cognitive problems from the unique perspective of stroke survivors.


2018 ◽  
Vol 43 (8) ◽  
pp. 864-874 ◽  
Author(s):  
Mark Ashwood ◽  
Christina Jerosch-Herold ◽  
Lee Shepstone

Following guidelines from the Patient-Centred Outcomes Research Institute and using a mixed methods study, a new patient-reported outcome measure (PROM) for both nerve trauma and compression affecting the hand, the Impact of a Hand Nerve Disorders (I-HaND) Scale, was developed. Face-to-face interviews with 14 patients and subsequent pilot-testing with 61 patients resulted in the development of the 32-item PROM. A longitudinal validation study with 82 patients assessed the psychometric properties of the I-HaND. Content and construct validity was confirmed by cognitive interviews with patients and through principal component analysis. The I-HaND has high internal consistency (α = 0.98) and excellent test–retest reliability (intraclass correlation coefficient = 0.97). Responsiveness statistics showed that the I-HaND can detect change over 3 months and discriminate between improvers and non-improvers. We conclude that the I-HaND can be used as a PROM for people with a range of hand nerve disorders.


2020 ◽  
pp. 174749302097936
Author(s):  
V Prakash ◽  
Mohan Ganesan

Background Prospects of a participation measure to be valid across cultures are debatable. Existing stroke outcome measures had been shown to have limited validity when used within Indian sociocultural contexts. Aim To develop and validate a patient-reported outcome measure of participation in daily activities appropriate for patients with stroke living in an Indian sociocultural context. Methods The scale was developed in two phases: scale development and psychometric testing. Items were derived from a conceptual framework of participation in daily activities of patients who had experienced stroke within an Indian context. The final version of the scale consisted of 25 items. A total of 377 patients diagnosed with stroke were recruited from two tertiary care hospitals and five physiotherapy outpatient rehabilitation centers in India. Psychometric testing of the scale included investigation of internal consistency, unidimensionality, construct validity (known group and convergent validity), and test–retest reliability. Results The scale items demonstrated good internal consistency (Cronbach’s alpha = .94). Confirmatory factor analysis results showed acceptable goodness of fit. The scale has shown good construct validity and test–retest reliability (intraclass correlation coefficient = 0.80). The scale differentiated patients with low and high disability severity (mean difference = 34, 95% CI = 27 to 39) and moderately associated with physical and instrumental activities of daily living ( r = 0.64, p < .001) and social participation domains of stroke impact scale ( r = 0.44, p < .001) and Barthel index ( r = 0.59, p < .001). Conclusion The Indian Stroke Scale has shown preliminary evidence of validity to support its use as a patient-reported outcome measure for evaluating poststroke participation in daily activities among patients with stroke in India.


2017 ◽  
Vol 1 ◽  
pp. s94 ◽  
Author(s):  
Dee Anna Glaser ◽  
Adelaide A Hebert ◽  
Sheri Fehnel ◽  
Dana DiBenedetti ◽  
Lauren Nelson ◽  
...  

Abstract Not AvailableDisclosure: Study supported by Dermira.


2020 ◽  
Vol 38 (11) ◽  
pp. 2863-2872 ◽  
Author(s):  
Malte W. Vetterlein ◽  
◽  
Luis A. Kluth ◽  
Valentin Zumstein ◽  
Christian P. Meyer ◽  
...  

Abstract Objectives To evaluate objective treatment success and subjective patient-reported outcomes in patients with radiation-induced urethral strictures undergoing single-stage urethroplasty. Patients and methods Monocentric study of patients who underwent single-stage ventral onlay buccal mucosal graft urethroplasty for a radiation-induced stricture between January 2009 and December 2016. Patients were characterized by descriptive analyses. Kaplan–Meier estimates were employed to plot recurrence-free survival. Recurrence was defined as any subsequent urethral instrumentation (dilation, urethrotomy, urethroplasty). Patient-reported functional outcomes were evaluated using the validated German extension of the Urethral Stricture Surgery Patient-Reported Outcome Measure (USS PROM). Results Overall, 47 patients were available for final analyses. Median age was 70 (IQR 65–74). Except for two, all patients had undergone pelvic radiation therapy for prostate cancer. Predominant modality was external beam radiation therapy in 70% of patients. Stricture recurrence rate was 33% at a median follow-up of 44 months (IQR 28–68). In 37 patients with available USS PROM data, mean six-item LUTS score was 7.2 (SD 4.3). Mean ICIQ sum score was 9.8 (SD 5.4). Overall, 53% of patients reported daily leaking and of all, 26% patients underwent subsequent artificial urinary sphincter implantation. Mean IIEF-EF score was 4.4 (SD 7.1), indicating severe erectile dysfunction. In 38 patients with data regarding the generic health status and treatment satisfaction, mean EQ-5D index score and EQ VAS score was 0.91 (SD 0.15) and 65 (SD 21), respectively. Overall, 71% of patients were satisfied with the outcome. Conclusion The success rate and functional outcome after BMGU for radiation-induced strictures were reasonable. However, compared to existing long-term data on non-irradiated patients, the outcome is impaired and patients should be counseled accordingly.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Johansen Skogestad ◽  
Marit Kirkevold ◽  
Petra Larsson ◽  
Christine Råheim Borge ◽  
Bent Indredavik ◽  
...  

Abstract Background Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. Methods Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. Results The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. Conclusion This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity.


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