P1.132 Towards an evidence base for selecting rating scale response categories for patient-reported outcome measures in Parkinson's disease

2009 ◽  
Vol 15 ◽  
pp. S62-S63
Author(s):  
I. Knutsson ◽  
H. Rydström ◽  
P. Nyberg ◽  
J. Reimer ◽  
P. Hagell
2017 ◽  
Vol 5 (2_suppl2) ◽  
pp. 2325967117S0007 ◽  
Author(s):  
Derya Çelik ◽  
Özge Çoban ◽  
Önder Kılıçoğlu

Purpose: MCID scores for outcome measures are frequently used evidence-based guides to gage meaningful changes. To conduct a systematic review of the quality and content of the the minimal clinically important difference (MCID) relating to 16 patient-rated outcome measures (PROM) used in lower extremity. Methods: We conducted a systematic literature review on articles reporting MCID in lower extremity outcome measures and orthopedics from January 1, 1980, to May 10, 2016. We evaluated MCID of the 16 patient reported outcome measures (PROM) which were Harris Hip Score (HHS), Oxford Hip Score (OHS), Hip Outcome Score (HOS), Hip Disability and Osteoarthritis Outcome Score (HOOS), The International Knee Documentation Committee Subjective Knee Form (IKDC), The Lysholm Scale, The Western Ontario Meniscal Evaluation Tool (WOMET), The Anterior Cruciate Ligament Quality of Life Questionnaire (ACL-QOL), The Lower Extremity Functional Scale (LEFS), The Western Ontario and Mcmaster Universities Index (WOMAC), Knee İnjury And Osteoarthritis Outcome Score (KOOS), Oxford Knee Score (OKS), Kujala Anterior Knee Pain Scale, The Victorian Institute of Sports Assessment Patellar Tendinosis (Jumper’s Knee) (VİSA-P), Tegner Activity Rating Scale, Marx Activity Rating Scale, Foot And Ankle Outcome Score (FAOS), The Foot Function Index (FFI), Foot And Ankle Ability Measure (FAAM), The Foot And Ankle Disability Index Score and Sports Module, Achill Tendon Total Rupture Score(ATRS), The Victorian İnstitute Of Sports Assesment Achilles Questionnaire(VİSA-A), American Orthopaedic Foot and Ankle Society (AOFAS). A search of the PubMed/MEDLINE, PEDro and Cochrane Cen¬tral Register of Controlled Trials and Web of Science databases from the date of inception to May 1, 2016 was conducted. The terms “minimal clinically important difference,” “minimal clinically important change”, “minimal clinically important improvement” “were combined with one of the PROM as mentioned above. Results: A total of 223 abstracts were reviewed and 119 articles chosen for full text review. Thirty articles were included in the final evaluation. The MCID was mostly calculated for WOMAC and frequently reported in knee and hip osteoartritis, knee and hip atrhroplasties, femoraasetabular impingement syndrome and focal cartilage degeneration. In addition, Receiver Operating Characteristic (ROC) analysis was the most used method to report MCID. Conclusions: MCID is an important concept used to determine whether a medical intervention improves perceived outcomes in patients. Despite an abundance of methods reported in the literature, little work in MCID estimation has been done in the PRAM related to lower extremity. There is a need for future studies in this regard.


2021 ◽  
Author(s):  
Kosei Nagata ◽  
Junya Miyahara ◽  
Hideki Nakamoto ◽  
Naohiro Kawamura ◽  
Yujiro Takeshita ◽  
...  

Abstract Although patients with diabetes reportedly have more peripheral neuropathy, the impacts of diabetes on postoperative recovery in pain and patient-reported outcome measures (PROMs) after laminoplasty for cervical spondylotic myelopathy (CSM) is not well characterized. The authors aimed to elucidate the effects of diabetes on neck/arm/hand/leg/foot pain and PROMs after laminoplasty CSM. The authors retrospectively reviewed 339 patients (82 with diabetes and 257 without) who underwent laminoplasty between C3 and C7 in 11 hospitals during April 2017−October 2019. Preoperative Numerical Rating Scale (NRS) scores in all five areas, the Short Form-12 Mental Component Summary, Euro quality of life 5-dimension, Neck Disability Index, and the Core Outcome Measures Index-Neck) were comparable between the groups. The between-group differences were also not significant in NRS scores and PROMs one after surgery. The change score of NRS hand pain was larger in the diabetic group than the nondiabetic group. The diabetic group showed worse preoperative score but greater improvement in the Short Form-12 Physical Component Summary than the nondiabetic group, following comparable score one year after surgery. These data indicated that the preoperative presence of diabetes, at least, did not adversely affect pain or PROMs one year after laminoplasty for CSM.


2021 ◽  
pp. 089198872110600
Author(s):  
Danilo Carrozzino ◽  
Kaj Sparle Christensen ◽  
Chiara Patierno ◽  
Chiara Siri ◽  
Anna Zecchinelli ◽  
...  

Objective: This is the first study applying Clinimetric Patient-Reported Outcome Measures (CLIPROM) criteria to evaluate the construct validity, sensitivity, and clinical utility of the SCL-90-R in patients with Parkinson’s disease (PD). Methods: A Rasch analysis was conducted using a sample of 488 PD outpatients. Results: Testing for dimensionality revealed that less than 5% of t-tests were significant, indicating that the SCL-90-R subscales entailed the property of construct validity. As to the total score, a Person Separation Reliability Index of .96 was found. Conclusions: The SCL-90-R total score is a sensitive screening measure that can be used not only to differentiate healthy stress reactions from symptoms of psychological distress but also to detect PD patients with an increased risk for psychiatric complications. As to the subscales, the brief versions that did not include misfitting items should be used to assess the severity of specific symptoms of psychological distress affecting PD patients.


2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
Ayse Kuspinar ◽  
Kedar K. V. Mate ◽  
Anne-Louise Lafontaine ◽  
Nancy Mayo

Introduction. Parkinson’s disease (PD) affects all aspects of an individual’s life and is heterogeneous across people and time. The Patient Generated Index (PGI) is an individualized measure of quality of life (QOL) that allows patients to identify the areas of life that are important to them. Although the PGI has immense potential for use in clinical and research settings, its validity has not been assessed in PD. The purpose of this study is to estimate how well areas of QOL that patients with PD nominate on the PGI agree with ratings obtained from standard outcome measures. Methods. Patients with PD completed the PGI and various standard patient-reported outcome (PRO) measures. The PGI and standard PRO measures were compared at the total score, domain, and item levels. Pearson’s correlations and independent t-tests were used, as well as positive and negative predictive values. Results. The sample (n = 76) had a mean age of 69 (standard deviation 9) and were predominantly men (59%). The PGI was moderately correlated (r = −0.35) with the standardized disease-specific QOL measure Parkinson’s Disease Questionnaire (PDQ-8). Within one severity rating, agreement between the PGI and different standard outcome measures ranged from 85 to 100% for walking, 69 to 100% for fatigue, 38 to 75% for depression, and 20 to 80% for memory/concentration. Conclusion. This study demonstrates that nominated areas of QOL on the PGI provide comparable results to standard PRO measures, and provides evidence in support of the validity of this individualized measure in PD.


2016 ◽  
Vol 130 (S4) ◽  
pp. S7-S28 ◽  
Author(s):  
T Marshak ◽  
W K Yun ◽  
C Hazout ◽  
R Sacks ◽  
R J Harvey

AbstractBackground:Vidian neurectomy has been proposed as a surgical option for rhinitis refractory to medical treatment. However, the evidence base for its benefit remains controversial.Methods:A systematic review was performed. Studies reporting original data on patients with rhinitis treated by vidian neurectomy were included. Patient-reported outcome measures were the primary outcome investigated; specific peri-operative morbidities were the secondary outcome.Results:A total of 1012 articles fulfilled the search criteria, 32 of which were included in the study. Patient-reported outcome measures were compared before and after surgery in eight studies. There were 529 patients represented in these trials. Significant improvement in rhinorrhoea was reported in all eight studies. Temporary dry eyes was reported in 24.63 per cent of cases (272 out of 1104 cases). There was no report of cranial nerve deficit or eye movement disturbance.Conclusion:Endoscopic vidian neurectomy does have a role in the surgical management of refractory rhinitis, particularly in patients with non-allergic rhinitis, but a well-designed cohort trial would be advantageous to clarify long-term outcomes.


2021 ◽  
Author(s):  
Sabine N van der Veer ◽  
Cecile Couchoud ◽  
Rachael L Morton

ABSTRACT In this issue of Clinical Kidney Journal, Van der Willik et al. report findings from a pilot study where they introduced collection of patient-reported outcome measures (PROMs) into routine kidney care in Dutch dialysis centres. It is comparable to a registry-led PROMs initiative in Sweden, published in Clinical Kidney Journal in 2020. Both studies reported low average PROMs response rates with substantial between-centre variation, and both identified suboptimal patient and staff engagement as a key barrier to implementing PROMs in routine care for people with chronic kidney disease (CKD). This suggests that national kidney registries could be well placed to facilitate large-scale collection of PROMs data, but that they may require additional guidance on how to do this successfully. In this editorial, we discuss the current state-of-play of PROMs collection by kidney registries and provide an overview of what is (un)known about the feasibility and effectiveness of PROMs in CKD and other conditions. We anticipate that the fast-growing evidence base on whether, and how, PROMs can be of value in CKD settings will expedite registry-based PROMs collection, which will ultimately lead to more valuable and person-centred services and to enhanced health and well-being of people with CKD.


2015 ◽  
Vol 39 (6) ◽  
pp. E7 ◽  
Author(s):  
Victor Chang ◽  
Jason M. Schwalb ◽  
David R. Nerenz ◽  
Lisa Pietrantoni ◽  
Sharon Jones ◽  
...  

OBJECT Given the scrutiny of spine surgery by policy makers, spine surgeons are motivated to demonstrate and improve outcomes, by determining which patients will and will not benefit from surgery, and to reduce costs, often by reducing complications. Insurers are similarly motivated. In 2013, Blue Cross Blue Shield of Michigan (BCBSM) and Blue Care Network (BCN) established the Michigan Spine Surgery Improvement Collaborative (MSSIC) as a Collaborative Quality Initiative (CQI). MSSIC is one of the newest of 21 other CQIs that have significantly improved—and continue to improve—the quality of patient care throughout the state of Michigan. METHODS MSSIC focuses on lumbar and cervical spine surgery, specifically indications such as stenosis, disk herniation, and degenerative disease. Surgery for tumors, traumatic fractures, deformity, scoliosis, and acute spinal cord injury are currently not within the scope of MSSIC. Starting in 2014, MSSIC consisted of 7 hospitals and in 2015 included another 15 hospitals, for a total of 22 hospitals statewide. A standardized data set is obtained by data abstractors, who are funded by BCBSM/BCN. Variables of interest include indications for surgery, baseline patient-reported outcome measures, and medical history. These are obtained within 30 days of surgery. Outcome instruments used include the EQ-5D general health state score (0 being worst and 100 being the best health one can imagine) and EQ-5D-3 L. For patients undergoing lumbar surgery, a 0 to 10 numeric rating scale for leg and back pain and the Oswestry Disability Index for back pain are collected. For patients undergoing cervical surgery, a 0 to 10 numeric rating scale for arm and neck pain, Neck Disability Index, and the modified Japanese Orthopaedic Association score are collected. Surgical details, postoperative hospital course, and patient-reported outcome measures are collected at 90-day, 1-year, and 2-year intervals. RESULTS As of July 1, 2015, a total of 6397 cases have been entered into the registry. This number reflects 4824 eligible cases with confirmed surgery dates. Of these 4824 eligible cases, 3338 cases went beyond the 120-day window and were considered eligible for the extraction of surgical details, 90-day outcomes, and adverse events. Among these 3338 patients, there are a total of 2469 lumbar cases, 862 cervical cases, and 7 combined procedures that were entered into the registry. CONCLUSIONS In addition to functioning as a registry, MSSIC is also meant to be a platform for quality improvement with the potential for future initiatives and best practices to be implemented statewide in order to improve quality and lower costs. With its current rate of recruitment and expansion, MSSIC will provide a robust platform as a regional prospective registry. Its unique funding model, which is supported by BCBSM/BCN, will help ensure its longevity and viability, as has been observed in other CQIs that have been active for several years.


Author(s):  
Carolina Climent-Sanz ◽  
Anna Marco-Mitjavila ◽  
Roland Pastells-Peiró ◽  
Fran Valenzuela-Pascual ◽  
Joan Blanco-Blanco ◽  
...  

Poor sleep quality is a common concern and a troublesome symptom among patients suffering from fibromyalgia. The purpose of this review was to identify and describe the available patient reported outcome measures (PROMs) of sleep quality validated in adult people diagnosed with fibromyalgia. The COSMIN and PRISMA recommendations were followed. An electronic systematized search in the electronic databases PubMed, Scopus, CINAHL Plus, PsycINFO, and ISI Web of Science was carried out. Validation studies of PROMs of sleep quality in fibromyalgia published in English or Spanish were included. The selection of the studies was developed through a peer review process through the online software “COVIDENCE”. The quality of the studies was assessed using the COSMIN Risk of Bias checklist. A total of 5 PROMs were found validated in patients with fibromyalgia: (1) Pittsburgh Sleep Quality Index (PSQI), (2) Jenkins Sleep Scale (JSS), (3) Sleep Quality Numeric Rating Scale (SQ-NRS), (4) Medical Outcomes Study-Sleep Scale (MOS-SS), and (5) Fibromyalgia Sleep Diary (FSD). The quality of the evidence was very good and the quality of the results ranged from moderate to high. All the included PROMs, except for the FSD, showed adequate psychometric properties and, therefore, are valid and reliable tools for assessing sleep quality in the context of FM. However, none of the studies analyzed all the psychometric properties of the included PROMs as established in the COSMIN guidelines, highlighting that this is a potential field of research for future investigations.


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