scholarly journals Validity, Reliability, and Responsiveness of the Brief Pain Inventory in Inflammatory Bowel Disease

2016 ◽  
Vol 2016 ◽  
pp. 1-10 ◽  
Author(s):  
Lars-Petter Jelsness-Jørgensen ◽  
Bjørn Moum ◽  
Tore Grimstad ◽  
Jørgen Jahnsen ◽  
Randi Opheim ◽  
...  

Background and Aims. No patient-reported outcome measures targeting pain have yet been validated for use in IBD patients. Consequently, the aim of this study was to test the psychometrical properties of the brief pain inventory (BPI) in an outpatient population with IBD.Methods. Participants were recruited from nine hospitals in the southeastern and western parts of Norway. Clinical and sociodemographic data were collected, and participants completed the BPI, as well as the Short-Form 36 (SF-36).Results. In total, 410 patients were included. The BPI displayed high correlations with the bodily pain dimension of the SF-36, as well as moderate correlations with disease activity indices. The BPI also displayed excellent internal consistency (Cronbach’s alpha value of 0.91, regardless of diagnosis) and good to excellent test-retest values (intraclass correlation coefficient (ICC) 0.84–0.90 and Kappa values > .70). In UC, calculation of responsiveness revealed that only BPI interference in patients reporting improvement reached the threshold of 0.2. In CD, Cohen’sdranged from 0.26 to 0.68.Conclusions. The BPI may serve as an important supplement in patient-reported outcome measurement in IBD. There is need to confirm responsiveness in future studies. Moreover, responsiveness should ideally be investigated using changes in objective markers of inflammation.

2018 ◽  
Vol 25 (13) ◽  
pp. 1791-1799 ◽  
Author(s):  
Brian C Healy ◽  
Jonathan Zurawski ◽  
Cindy T Gonzalez ◽  
Tanuja Chitnis ◽  
Howard L Weiner ◽  
...  

Background: To date, the computerized adaptive testing (CAT) version of the Neuro-quality of life (QOL) has not been assessed in a large sample of people with multiple sclerosis (MS). Objective: The aim of this study was to assess the associations between the CAT version of Neuro-QOL and other clinical and patient-reported outcome measures. Methods: Subjects ( n = 364) enrolled in SysteMS completed the CAT version of the Neuro-QOL and the 36-Item Short Form Survey (SF-36) within 4 weeks of a clinical exam that included the Multiple Sclerosis Functional Composite-4 (MSFC-4). The correlations between the Neuro-QOL domains and the MSFC-4 subscores and the SF-36 scores were calculated. The changes over time in the Neuro-QOL and other measures were also examined. Results: The lower extremity functioning score of the Neuro-QOL showed the highest correlations with MSFC-4 components including Timed 25-Foot Walk, 9-Hole Peg Test, and cognitive score. The expected domains of the Neuro-QOL showed high correlations with the SF-36 subscores, and some Neuro-QOL domains were associated with many SF-36 subscores. There was limited longitudinal change on the Neuro-QOL domains over 12 months, and the change was not associated with change on other measures. Conclusion: The CAT version of the Neuro-QOL shows many of the expected associations with clinical and patient-reported outcome measures.


Endocrine ◽  
2020 ◽  
Vol 70 (1) ◽  
pp. 123-133 ◽  
Author(s):  
Merel van der Meulen ◽  
Amir H. Zamanipoor Najafabadi ◽  
Daniel J. Lobatto ◽  
Cornelie D. Andela ◽  
Thea P. M. Vliet Vlieland ◽  
...  

Abstract Purpose Pituitary diseases severely affect patients’ health-related quality of life (HRQoL). The most frequently used generic HRQoL questionnaire is the Short Form-36 (SF-36). The shorter 12-item version (SF-12) can improve efficiency of patient monitoring. This study aimed to determine whether SF-12 can replace SF-36 in pituitary care. Methods In a longitudinal cohort study (August 2016 to December 2018) among 103 endoscopically operated adult pituitary tumor patients, physical and mental component scores (PCS and MCS) of SF-36 and SF-12 were measured preoperatively, and 6 weeks and 6 months postoperatively. Chronic care was assessed with a cross-sectional study (N = 431). Mean differences and agreement between SF-36 and SF-12 change in scores (preoperative vs. 6 months) were assessed with intraclass correlation coefficients (ICC) and limits of agreement, depicting 95% of individual patients. Results In the longitudinal study, mean differences between change in SF-36 and SF-12 scores were 1.4 (PCS) and 0.4 (MCS) with fair agreement for PCS (ICC = 0.546) and substantial agreement for MCS (ICC = 0.931). For 95% of individual patients, the difference between change in SF-36 and SF-12 scores varied between −14.0 and 16.9 for PCS and between −7.8 and 8.7 for MCS. Cross-sectional results showed fair agreement for PCS (ICC = 0.597) and substantial agreement for MCS (ICC = 0.943). Conclusions On a group level, SF-12 can reliably reproduce MCS in pituitary patients, although PCS is less well correlated. However, individual differences between SF-36 and SF-12 can be large. For pituitary diseases, alternative strategies are needed for concise, but comprehensive patient-reported outcome measurement.


2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Saeid Shahraz ◽  
Tan P. Pham ◽  
Marc Gibson ◽  
Marie De La Cruz ◽  
Munther Baara ◽  
...  

Abstract Background Scrolling is a perceived barrier in the use of bring your own device (BYOD) to capture electronic patient reported outcomes (ePROs). This study explored the impact of scrolling on the measurement equivalence of electronic patient-reported outcome measures (ePROMs) in the presence and absence of scrolling. Methods Adult participants with a chronic condition involving daily pain completed ePROMs on four devices with different scrolling properties: a large provisioned device not requiring scrolling; two provisioned devices requiring scrolling – one with a “smart-scrolling” feature that disabled the “next” button until all information was viewed, and a second without this feature; and BYOD with smart-scrolling. The ePROMs included were the SF-12, EQ-5D-5L, and three pain measures: a visual analogue scale, a numeric response scale and a Likert scale. Participants completed English or Spanish versions according to their first language. Associations between ePROM scores were assessed using intraclass correlation coefficients (ICCs), with lower bound of 95% confidence interval (CI) > 0.7 indicating comparability. Results One hundred fifteen English- or Spanish-speaking participants (21-75y) completed all four administrations. High associations between scrolling and non-scrolling were observed (ICCs: 0.71–0.96). The equivalence threshold was met for all but one SF-12 domain score (bodily pain; lower 95% CI: 0.65) and two EQ-5D-5L item scores (pain/discomfort, usual activities; lower 95% CI: 0.64/0.67). Age, language, and device size produced insignificant differences in scores. Conclusions The measurement properties of PROMs are preserved even in the presence of scrolling on a handheld device. Further studies that assess scrolling impact over long-term, repeated use are recommended.


2019 ◽  
Vol 41 (3) ◽  
pp. 253-258 ◽  
Author(s):  
Feras J. Waly ◽  
Eng Meng Nicholas Yeo ◽  
Kevin J. Wing ◽  
Murray J. Penner ◽  
Andrea Veljkovic ◽  
...  

Background: Ankle osteoarthritis is a significant cause of pain and disability. Despite the effectiveness of treatments, a subset of patients remains with persistent pain and functional limitations. The purpose of this study was to use preoperative patient-reported outcome measures to predict which ankle osteoarthritis patients would be most likely to experience postoperative improvements in functional outcomes. Methods: A retrospective analysis of prospectively collected data was used to evaluate 427 patients with end-stage ankle arthritis with 5-year follow-up. Demographics, comorbidities, Ankle Osteoarthritis Scale (AOS), Ankle Arthritis Score (AAS), and the physical and mental component scores of the Short Form–36 (SF-36 Physical Components Score [PCS] and Mental Components Score [MCS]) were collected. The minimal clinically important difference (MCID) was then calculated. Receiver operating characteristic (ROC) analysis was used to choose the optimal threshold values of preoperative patient-reported outcome measure and assess the prediction performance. Results: Patients who scored worst at preoperative baseline made the greatest gains in function and pain relief, and they had a high chance of achieving MCID following surgical treatment. ROC curves demonstrated that preoperative AOS, AAS, and SF-36 PCS and MCS scores were predictive of postoperative improvements in physical and mental function. Patients with preoperative AOS score above 45.7 had an 83% probability of achieving an MCID (AUC = 0.67). Similarly, patients with a preoperative AAS score above 25.7 had a 78% probability of achieving an MCID (AUC = 0.63). Patients with a preoperative SF-36 PCS score below 31 had a 62% probability of achieving an MCID (AUC = 0.64). Patients with a preoperative SF-36 MCS below 52.7 had a 47% probability of achieving an MCID (AUC = 0.89). MCIDs for AOS, AAS, SF3-36 PCS, and SF-36 MCS score changes were 12.4, 10.0, 6.43, and 8.1, respectively. Conclusion: Preoperative patient-reported outcomes measures could predict postoperative improvement in ankle arthritis patients. The results of this study may be used to facilitate discussion between physicians and patients regarding the expected benefit of surgery. Level of Evidence: Level III, prognostic comparative study.


Assessment ◽  
2016 ◽  
Vol 24 (3) ◽  
pp. 300-307 ◽  
Author(s):  
Jiseon Kim ◽  
Hyewon Chung ◽  
Robert L. Askew ◽  
Ryoungsun Park ◽  
Salene M. W. Jones ◽  
...  

This study examined the accuracy of depression cross-walk tables in a sample of people with multiple sclerosis (MS). The tables link scores of two commonly used depression measures to the Patient Reported Outcome Measurement Information System Depression (PROMIS-D) scale metric. We administered the 8-item PROMIS-D (Short-Form 8b; PROMIS-D-8), the 20-item Center for Epidemiologic Studies Depression Scale (CESD-20), and the 9-item Patient Health Questionnaire (PHQ-9) to 459 survey participants with MS. We examined correlations between actual PROMIS-D-8 scores and the scores predicted by cross-walks based on PHQ-9 and CESD-20 scores. Intraclass correlation coefficients were used to assess correspondence. Consistency in severity classification was also calculated. Finally, we used Bland–Altman plots to graphically examine the levels of agreement. The correlations between actual and cross-walked PROMIS-D-8 scores were strong (CESD-20 = .82; PHQ-9 = .74). The intraclass correlation was moderate (.77). Participants were consistently classified as having or not having at least moderate depressive symptoms by both actual and cross-walked scores derived from the CESD-20 (90%) and PHQ-9 (85%). Bland–Altman plots suggested the smaller differences between actual and cross-walked scores with greater-than-average depression severity. PROMIS cross-walk tables can be used to translate depression scores of people with MS to the PROMIS-D metric, promoting continuity with previous research.


RMD Open ◽  
2021 ◽  
Vol 7 (2) ◽  
pp. e001707
Author(s):  
Ayşe A Küçükdeveci ◽  
Atilla H Elhan ◽  
Beyza D Erdoğan ◽  
Şehim Kutlay ◽  
Derya Gökmen ◽  
...  

IntroductionThe importance of patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA) clinical studies has been recognised for many years. The current study aims to describe the RA PROMs used over the past 20 years, and their performance metrics, to underpin appropriate tool selection.MethodsThe study included a systematic search for PROMs that have been in use over the period 2000–2019, with detailed documentation of their psychometric properties, and a user-friendly presentation of the extensive evidence base.Results125 PROMs were identified with psychometric evidence available. The domains of pain, fatigue, emotional functions, mobility, physical functioning and work dominated, with self-efficacy and coping as personal factors. Domains such as stiffness and sleep were poorly served. The most frequently used PROMs included the Health Assessment Questionnaire Disability Index (HAQ), the Short Form 36 (SF-36), the EuroQoL and the Modified HAQ which, between them, appeared in more than 3500 papers. Strong psychometric evidence was found for the HAQ, and the SF-36 Physical Functioning and Vitality (fatigue) domains. Otherwise, all domains except stiffness, sleep, education and health utility, had at least one PROM with moderate level of psychometric evidence.ConclusionThere is a broad range of PROMs for measuring RA outcomes, but the quality of psychometric evidence varies widely. This work identifies gaps in key RA domains according to the biopsychosocial model.


2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.


Author(s):  
Elke Maurer ◽  
Christian Bahrs ◽  
Luise Kühle ◽  
Patrick Ziegler ◽  
Christoph Gonser ◽  
...  

Abstract Background Patient-reported outcome measures (PROMs) are gaining increasing importance in the context of quality management. Different PROMs and scoring tools are available to assess shoulder function after proximal humeral fracture (PHFx). In Europe, these include the Constant-Murley Score (CS), Neer Score (NS), Oxford Shoulder Score (OSS), University of California at Los Angeles Score (UCLA) and Disabilities of the Arm, Shoulder and Hands Score (DASH). In addition, the health-related quality of life can be assessed by the PROMs Short Form 36 (SF-36) and EuroQol (EQ-5D). Although all these test instruments assess shoulder function, the components to be answered objectively and subjectively vary and thus the possibility of independent assessment. The aim of the present study is to compare the correlation between the results of the different PROMs and the clinical screening tools in patients with PHFx. Methods 76 patients who were treated with angular stable plate osteosynthesis for a proximal humeral fracture between 01/2001 and 12/2005 were included in this trial. The outcome was measured with PROMs or clinical scoring tools such as CS, NS, OSS, UCLA, DASH, SF-36 and EQ-5D and a correlation coefficient between those evaluation tools was calculated. In addition, a distinction was made between the two force measurement methods (wrist [HG] vs. deltoid muscle [DM]) for CS. Results The correlation of the results of CS and NS (HG: r = 0.85; p < 0.001/DM: r = 0.93; p < 0.001), CS and UCLA (HG: r = 0.83; p < 0.001/DM: r = 0.86; p < 0.001), NS and UCLA (r = 0.91; p < 0.001) as well as DASH and OSS (r = 0.88; p < 0.001) was strongly expressed. A good comparability of the results was demonstrated between CS and OSS (HG: r = 0.63; p < 0.001/DM: r = 0.66; p < 0.001) and between CS and DASH (HG: r = 0.62; p < 0.001/DM: r = 0.61; p < 0.001). The correlation of CS (HG/DM) and UCLA with the EQ-5D index was also good. Assessment of the physical components of SF-36 with CS, NS, OSS, UCLA and DASH showed a moderate to good association, while the mental components of SF-36 showed a low correlation (p > 0.05). Conclusion The assessment of shoulder function after proximal humerus fracture showed a very strong correlation within the clinical questionnaires (CS/NS/UCLA) and the PROMs (OSS/DASH). A strong correlation also exists between the clinical questionnaires and the PROMs. There was only a moderate correlation with the EQ-5D. The moderate to strong correlation between the physical components of SF-36, with almost no correlation between the mental components of SF-36, indicates that the quality of life restriction is based on a physical, but not on a mental impairment.


2019 ◽  
Vol 6 (1) ◽  
pp. e000398 ◽  
Author(s):  
Melanie Lloyd ◽  
Emily Callander ◽  
Amalia Karahalios ◽  
Lucy Desmond ◽  
Harin Karunajeewa

IntroductionPatient-reported outcome measures (PROMs) are a vital component of patient-centred care. Community-acquired pneumonia (CAP) is a significant contributor to morbidity, mortality and health service costs globally, but there is a lack of consensus regarding PROMs for this condition.MethodsWe searched MEDLINE, EMBASE and Cochrane Collaboration for studies, both interventional and observational, of adult recovery from CAP that applied at least one validated PROM instrument and were published before 31 December 2017. The full text of included studies was examined and data collected on study design, PROM instruments applied, constructs examined and the demographic characteristics of the populations measured. For all CAP-specific PROM instruments identified, content validity was assessed using the COnsensus based Standards for selection of health Measurement INstruments guidelines (COSMIN).ResultsForty-two articles met the inclusion criteria and applied a total of 17 different PROM instruments including five (30%) classified as CAP specific, six (35%) as generic and six (35%) that measured functional performance or were specific to another disease. The 36-Item Short Form Survey (SF-36) was the most commonly used instrument (15 articles). Only one of 11 (9%) patient cohorts assessed using a CAP-specific instrument had a mean age ≥70 years. The CAP-Sym and CAP-BIQ questionnaires had sufficient content validity, though the quality of evidence for all CAP-specific instruments was rated as very low to low.DiscussionPROM instruments used to measure recovery from CAP are inconsistent in constructs measured and have frequently been developed and validated in highly selective patient samples that are not fully representative of the hospitalised CAP population. The overall content validity of all available CAP-specific instruments is unclear, particularly in the context of elderly hospitalised populations. Based on current evidence, generic health instruments are likely to be of greater value for measuring recovery from CAP in this group.


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