Nancy R. LaPelle

Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): Scale Presentation and Clinimetric Testing Results

We present a clinimetric assessment of the Movement Disorder Society (MDS)‐sponsored revision of the Unified Parkinsons Disease Rating Scale (MDS‐UPDRS). The MDS‐UDPRS Task Force revised and expanded the UPDRS using recommendations from a published critique. The MDS‐UPDRS has four parts, namely, I: Non‐motor Experiences of Daily Living; II: Motor Experiences of Daily Living; III: Motor Examination; IV: Motor Complications. Twenty questions are completed by the patient/caregiver. Item‐specific instructions and an appendix of complementary additional scales are provided. Movement disorder specialists and study coordinators administered the UPDRS (55 items) and MDS‐UPDRS (65 items) to 877 English speaking (78% non‐Latino Caucasian) patients with Parkinsons disease from 39 sites. We compared the two scales using correlative techniques and factor analysis. The MDS‐UPDRS showed high internal consistency (Cronbachs alpha = 0.79–0.93 across parts) and correlated with the original UPDRS (ρ = 0.96). MDS‐UPDRS across‐part correlations ranged from 0.22 to 0.66. Reliable factor structures for each part were obtained (comparative fit index > 0.90 for each part), which support the use of sum scores for each part in preference to a total score of all parts. The combined clinimetric results of this study support the validity of the MDS‐UPDRS for rating PD.

Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): Process, format, and clinimetric testing plan.

This article presents the revision process, major innovations, and clinimetric testing program for the Movement Disorder Society (MDS)–sponsored revision of the Unified Parkinsons Disease Rating Scale (UPDRS), known as the MDS‐UPDRS. The UPDRS is the most widely used scale for the clinical study of Parkinsons disease (PD). The MDS previously organized a critique of the UPDRS, which cited many strengths, but recommended revision of the scale to accommodate new advances and to resolve problematic areas. An MDS‐UPDRS committee prepared the revision using the recommendations of the published critique of the scale. Subcommittees developed new material that was reviewed by the entire committee. A 1‐day face‐to‐face committee meeting was organized to resolve areas of debate and to arrive at a working draft ready for clinimetric testing. The MDS‐UPDRS retains the UPDRS structure of four parts with a total summed score, but the parts have been modified to provide a section that integrates nonmotor elements of PD: I, Nonmotor Experiences of Daily Living; II, Motor Experiences of Daily Living; III, Motor Examination; and IV, Motor Complications. All items have five response options with uniform anchors of 0 = normal, 1 = slight, 2 = mild, 3 = moderate, and 4 = severe. Several questions in Part I and all of Part II are written as a patient/caregiver questionnaire, so that the total rater time should remain approximately 30 minutes. Detailed instructions for testing and data acquisition accompany the MDS‐UPDRS in order to increase uniform usage. Multiple language editions are planned. A three‐part clinimetric program will provide testing of reliability, validity, and responsiveness to interventions. Although the MDS‐UPDRS will not be published until it has successfully passed clinimetric testing, explanation of the process, key changes, and clinimetric programs allow clinicians and researchers to understand and participate in the revision process.

Simplifying Qualitative Data Analysis Using General Purpose Software Tools

This article shows how clever but simple use of word-processing functions can provide many features of special-purpose software designed for analyzing text. For many qualitative research projects, and for students who are learning computerassisted analysis of text, the Microsoft Word functions outlined here may be all that are required. Examples are given showing how Microsoft Word can be used for coding and retrieving, semiautomated coding and inspection, creating hierarchies of code categories via indexing, global editing of theme codes, coding of “face-sheet” data, exploring relationships between face-sheet codes and conceptual codes, quantifying the frequency of code instances, and annotating text. The techniques outlined can be used for analyzing and managing many kinds of data, including key informant interviews, focus groups, document and literature reviews, and open-ended survey questions.This article shows how clever but simple use of word-processing functions can provide many features of special-purpose software designed for analyzing text. For many qualitative research projects, and for students who are learning computerassisted analysis of text, the Microsoft Word functions outlined here may be all that are required. Examples are given showing how Microsoft Word can be used for coding and retrieving, semiautomated coding and inspection, creating hierarchies of code categories via indexing, global editing of theme codes, coding of “face-sheet” data, exploring relationships between face-sheet codes and conceptual codes, quantifying the frequency of code instances, and annotating text. The techniques outlined can be used for analyzing and managing many kinds of data, including key informant interviews, focus groups, document and literature reviews, and open-ended survey questions.

Sustainability of public health programs: the example of tobacco treatment services in Massachusetts

Sustaining important public or grant-funded services after initial funding is terminated is a major public health challenge. We investigated whether tobacco treatment services previously funded within a statewide tobacco control initiative could be sustained after state funding was terminated abruptly. We found that 2 key strategies-redefining the scope of services being offered and creative use of resources-were factors that determined whether some community agencies were able to sustain services at a much higher level than others after funding was discontinued. Understanding these strategies and developing them at a time when program funding is not being threatened is likely to increase program sustainability.

Helping men make an informed decision about prostate cancer screening: A pilot study of telephone counseling

OBJECTIVE Evaluate a computer-assisted telephone counseling (CATC) decision aid for men considering a prostate specific antigen (PSA) test. METHODS Eligible men were invited by their primary care providers (PCPs) to participate. Those consenting received an educational booklet followed by CATC. The counselor assessed stage of readiness, reviewed booklet information, corrected knowledge deficits and helped with a values clarification exercise. The materials presented advantages and disadvantages of being screened and did not advocate for testing or for not testing. Outcome measures included changes in stage, decisional conflict, decisional satisfaction, perceived vulnerability and congruence of a PSA testing decision with a pros/cons score. Baseline and final surveys were administered by telephone. RESULTS There was an increase in PSA knowledge (p<0.001), and in decisional satisfaction (p<0.001), a decrease in decisional conflict (p<0.001), and a general consistency of those decisions with the mans values. Among those initially who had not made a decision, 83.1% made a decision by final survey with decisions equally for or against screening. CONCLUSIONS The intervention provides realistic, unbiased and effective decision support for men facing a difficult and confusing decision. PRACTICE IMPLICATIONS Our intervention could potentially replace a discussion of PSA testing with the PCP for most men.

Official Japanese Version of the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale: validation against the original English version

The International Parkinson and Movement Disorder Society (MDS)‐sponsored revision of the Unified Parkinsons Disease Rating Scale (MDS‐UPDRS) has been developed and is now available in English. Part of the overall program includes the establishment of official non‐English translations of the MDS‐UPDRS. We present the process for completing the official Japanese translation of the MDS‐UPDRS with clinimetric testing results. In this trial, the MDS‐UPDRS was translated into Japanese, underwent cognitive pretesting, and the translation was modified after taking the results into account. The final translation was approved as the Official Working Draft of the MDS‐UPDRS Japanese version and tested in 365 native‐Japanese–speaking patients with PD. Confirmatory analyses were used to determine whether the factor structure for the English‐language MDS‐UPDRS could be confirmed in data collected using the Official Working Draft of the Japanese translation. As a secondary analysis, we used exploratory factor analyses to examine the underlying factor structure without the constraint of a prespecified factor organization. Confirmatory factor analysis revealed that Comparative Fit Index for all parts of the MDS‐UPDRS exceeded the minimal standard of 0.90, relative to the English version, and therefore the Japanese translation met the prespecified criterion to be designated, called an official MDS translation. Secondary analyses revealed some differences between the English‐language MDS‐UPDRS and the Japanese translation; however, these differences were considered to be within an acceptable range. The Japanese version of the MDS‐UPDRS met the criterion as an Official MDS Translation and is now available for use (www.movementdisorders.org).

IPMDS-Sponsored Scale Translation Program: Process, Format, and Clinimetric Testing Plan for the MDS-UPDRS and UDysRS

We present the methodology and results of the clinimetric testing program for non‐English translations of International Parkinson and Movement Disorder Society (MDS)–sponsored scales. The programs focus on the MDS revision of the UPDRS (MDS‐UPDRS) and the Unified Dyskinesia Rating Scale (UDysRS). The original development teams of both the MDS‐UPDRS and UDysRS envisioned official non‐English translations and instituted a rigorous translation methodology. The formal process includes five core steps: (1) registration and start‐up; (2) translation and independent back‐translation; (3) cognitive pretesting to establish that the translation is clear and that it is comfortably administered to and completed by native‐speaker raters and patients; (4) field testing in the native language using a large sample of Parkinsons disease patients; and (5) full clinimetric testing. To date, the MDS‐UPDRS has 21 active language programs. Nine official translations are available, having completed all phases successfully, and the others are in different stages of development. For the UDysRS, 19 programs are active, with three official translations now available and the rest in development at different stages. Very few scales in neurology and none in movement disorders have fully validated translations, and this model may be adopted or modified by other scale programs to allow careful validation of translations. Having validated translations allows for maximal homogeneity of tools utilized in multicenter research or clinical trial programs.

Staging mammography nonadherent women: A qualitative study

Background. Few studies have related stages of mammography screening nonadherence with the rationale used by overdue women. Methods. We used a grounded theory approach to obtain and analyze data from focus groups, telephone interviews, and surveys. Emergent specific themes were compared with emerging decision levels of nonadherence. Each decision level was then compared with the Precaution Adoption Process Model and the Transtheoretical Model. Results. A total of 6 key themes influencing mammogram nonadherence emerged as did 6 decision levels. Variability within themes was associated with specific decision levels. The decision levels were not adequately classified by either stage model. Conclusions. Stage-based educational strategies may benefit by tailoring interventions to these 6 decision levels.

Handling missing values in the MDS-UPDRS

This study was undertaken to define the number of missing values permissible to render valid total scores for each Movement Disorder Society Unified Parkinsons Disease Rating Scale (MDS‐UPDRS) part. To handle missing values, imputation strategies serve as guidelines to reject an incomplete rating or create a surrogate score. We tested a rigorous, scale‐specific, data‐based approach to handling missing values for the MDS‐UPDRS. From two large MDS‐UPDRS datasets, we sequentially deleted item scores, either consistently (same items) or randomly (different items) across all subjects. Lins Concordance Correlation Coefficient (CCC) compared scores calculated without missing values with prorated scores based on sequentially increasing missing values. The maximal number of missing values retaining a CCC greater than 0.95 determined the threshold for rendering a valid prorated score. A second confirmatory sample was selected from the MDS‐UPDRS international translation program. To provide valid part scores applicable across all Hoehn and Yahr (H&Y) stages when the same items are consistently missing, one missing item from Part I, one from Part II, three from Part III, but none from Part IV can be allowed. To provide valid part scores applicable across all H&Y stages when random item entries are missing, one missing item from Part I, two from Part II, seven from Part III, but none from Part IV can be allowed. All cutoff values were confirmed in the validation sample. These analyses are useful for constructing valid surrogate part scores for MDS‐UPDRS when missing items fall within the identified threshold and give scientific justification for rejecting partially completed ratings that fall below the threshold.

Cross‐Cultural Differences of the Non‐Motor Symptoms Studied by the Traditional Chinese Version of the International Parkinson and Movement Disorder Society–Unified Parkinson's Disease Rating Scale

Given the importance of ethnic differences in the evaluation of various aspects of symptoms in patients with Parkinsons disease (PD), we present the formal procedure for completing the traditional Chinese translation of the International and Parkinson and Movement Disorder Society/UPDRS (MDS‐UPDRS) and highlight the discrepancy in nonmotor symptoms (NMS) between patients in Eastern and Western countries.