Publications

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    ABSTRACT: The purpose of this formative qualitatively driven mixed-methods study was to refine a measurement tool for use in interventions to improve colorectal cancer (CRC) surveillance care. We employed key informant interviews to explore the attitudes, practices, and preferences of four physician specialties. A national survey, literature review, and expert consultation also informed survey development. Cognitive pretesting obtained participant feedback to improve the survey's face and content validity and reliability. Results showed that additional domains were needed to reflect contemporary interdisciplinary trends in survivorship care, evolving practice changes and current health policy. Observed dissonance in specialists' perspectives poses challenges for the development of interventions and psychometrically sound measurement. Implications for future research include need for a flexible care model with enhanced communication and role definitions among clinical specialists, improvements in surveillance at multilevels (patients, providers, and systems), and measurement tools that focus on multispecialty involvement and the changing practice and policy environment. © The Author(s) 2015.
    No preview · Article · Apr 2015 · Qualitative Health Research
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    ABSTRACT: This study was undertaken to define the number of missing values permissible to render valid total scores for each Movement Disorder Society Unified Parkinson's 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. Lin's 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. © 2015 International Parkinson and Movement Disorder Society. © 2015 International Parkinson and Movement Disorder Society.
    No preview · Article · Feb 2015 · Movement Disorders
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    ABSTRACT: Colon cancer is one of the most commonly diagnosed cancers in the United States, and an increasing number of survivors has underscored the need for improved colon cancer surveillance care quality. Post-treatment surveillance includes follow-up care visits and tests as well as psychosocial support and lifestyle counseling. This formative study explored the individual, interpersonal, and organizational-level factors related to adherence to surveillance care guidelines to identify modifiable factors for potential educational intervention strategies. A convenience sample of 22 survivors (12 women and 10 men) from two cancer centers were recruited to participate in focus groups or key informant telephone interviews to explore their experiences with care after completing treatment and complete a brief survey. Content analysis was used to identify themes. Results confirmed that survivors navigated a complex surveillance care schedule and described a strong trust in their health care providers that guided their follow-up care experiences. Participants defined the terms "survivorship" and "follow-up" in a variety of different ways. Individual-level themes critical to survivors' experiences included having a positive attitude, relying on one's faith, and coping with fears. Interpersonal-level themes centered around interactions and communication with family and health care providers in follow-up care. While organizational-level factors were highlighted infrequently, participants rated office reminder systems and communication among their multiple providers as valuable. Educational interventions capitalizing on survivors' connections with their physicians and focusing on preparing survivors for what to expect in the next phase of their cancer experience, could be beneficial at the end of treatment to activate survivors for the transition to the post-treatment period.
    No preview · Article · Nov 2014 · Journal of Cancer Education
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    ABSTRACT: Background: The Movement Disorder Society (MDS)-sponsored revision of the Unified Parkinson's Disease (PD) Rating Scale (UPDRS) (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. Methods: In this trial, the MDS-UPDRS was translated into Japanese, underwent cognitive pre-testing, and the translation was modified after taking the results into account. The final translation was approved as 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 pre-specified factor organization. Results: 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 Japanese translation met the pre-specified 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. Conclusions: The Japanese version of the MDS-UPDRS met the criterion as an Official MDS Translation and is now available for use (www.movementdisorders.org).
    No preview · Article · Sep 2014
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    ABSTRACT: The Unified Dyskinesia Rating Scale (UDysRS) assesses the severity and disability caused by dyskinesias in Parkinson's disease (PD). As part of the UDysRS development plan, the International Parkinson and Movement Disorder Society (MDS) established guidelines for official non-English translations. We present here the formal process for completing this program and the data on the first officially approved non-English version of the UDysRS (Spanish). The UDysRS translation program involves four steps: translation and back-translation; cognitive pretesting to ensure that raters and patients understand the scale and are comfortable with its content; field testing of the finalized version; and analysis of the factor structure of the tested version against the original English-language version. To be designated an official MDS translation, the confirmatory factor analysis comparative fit index (CFI) had to be ≥0.90. The Spanish UDysRS was tested in 253 native-Spanish-speaking patients with PD. For all four parts of the UDysRS, the CFI, was ≥0.94. Exploratory factor analyses of the Spanish version revealed a very clear factor structure, with three factors related to ON dyskinesia, OFF dystonia, and patient perceptions of the functional effect of dyskinesias. The Spanish version of the UDysRS successfully followed the MDS Translation Program protocol, reached the criterion to be designated as an official translation, and is now available on the MDS website for use.
    No preview · Article · Sep 2014
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    ABSTRACT: 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 Parkinson's 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.
    No preview · Article · Jun 2014
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    ABSTRACT: In 2010, the New England Region-National Network of Libraries of Medicine at University of Massachusetts Medical School received funding to improve information access for public health departments in 6 New England states and Colorado. Public health departments were provided with desktop digital access to licensed e-resources available through special pricing. In January through mid-April 2012, we evaluated the effectiveness of providing access to and training for using e-resources to public health department staff to motivate usage in practice. We found that additional strategies are needed to accomplish this. (Am J Public Health. Published online ahead of print November 14, 2013: e1-e4. doi:10.2105/AJPH.2013.301404).
    No preview · Article · Nov 2013 · American Journal of Public Health
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    ABSTRACT: The National Network of Libraries of Medicine, New England Region (NN/LM NER) at the University of Massachusetts Medical seeks to further the mission of the NN/LM, while raising awareness, use and knowledge of National Library of Medicine (http://nlm.nih.gov) resources and services; and increasing collaboration with libraries through a Focused Health Information Outreach model. Focused Health Information Outreach targets specific geographic areas in New England facing high rates of health disparities, socioeconomic challenges, and health care shortages. NER reaches out to libraries, public health agencies, schools, and other stakeholders in the provision of health information to connect them with the NLM. This project summary highlights accomplishments of the NER's third cycle (Year 2) of Focused Outreach. Geographic areas for year 2 included Hartford, Connecticut and North Central Massachusetts.
    Preview · Article · Aug 2013
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    Andrew T. Creamer · Donna Kafel · Nancy R. LaPelle · Elaine R. Martin
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    ABSTRACT: OBJECTIVE: The Lamar Soutter Library of the University of Massachusetts Medical School is working with partner librarians at MBL-WHOI, Northeastern, Tufts and UMass Amherst on a NN/LM NER grant to author online modules and develop additional Research Data Management (RDM) Teaching Cases based on the UMMS/WPI Data Management Frameworks. The goal is to create an online curriculum to support these institution’s researchers’ data management (RDM) practices. METHODS: The criteria for module content were developed by an evaluation expert using the NSF data management plan requirements. To develop additional RDM Teaching Cases librarians conducted semi-structured data interviews with researchers. The librarians transcribed and coded these interviews using a validated RDM planning instrument to categorize the projects’ RDM challenges. The librarians then authored case narratives based on the data interview, highlighting these authentic challenges along with a set of discussion and comprehension questions to support learner outcomes. RESULTS: Currently there are seven modules in addition to the RDM Teaching Cases being authored by the project partners. The first drafts of the Module content and Teaching Cases are due for completion in spring 2013. CONCLUSIONS: A Data Management Curriculum and RDM Teaching Cases will provide libraries with an educational resource for teaching best practices and supporting their student and faculty research. These educational materials will help to provide researchers and future-researchers with valuable lessons to improve the management of their data throughout the stages of their projects, and will encourage them to see the relationships between managing their data and sharing their data in the future.
    Preview · Article · Apr 2013
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    ABSTRACT: The Case Study Approach is a cooperative and active-learning strategy. It requires students to interact with peers, and to maintain a high level of engagement as they apply theoretical principles to solve authentic challenges. Presently there are several online resources for teaching research data management (RDM). Among this sample, many have provided ancillary “case studies” to illustrate their theoretical principles. However, none uses the term teaching case consistently: one can find examples ranging from a few slides to small vignettes in an online textbook. These cases share a lack of researcher narrative, a disembodiment that prevents students from applying an Interpretivist approach to elucidate both the PI(s)’ explicit and tacit data management needs. Furthermore, none has applied a systematic approach to integrating the teaching case into its curriculum. This handout details the steps to construct an interpretive and integrated RDM Teaching Case Study.
    No preview · Article · Jan 2013
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    ABSTRACT: In preparation for a pilot study to evaluate the efficacy of a school nurse-delivered intervention, focus groups were conducted to gain insight into the perceptions of stakeholders regarding the design and implementation of the intervention. Fifteen focus groups at participating schools. One hundred subjects, including overweight and obese high school students, parents, high school nurses, and staff. Stakeholders' perceptions. Focus groups were audiotaped and transcribed verbatim. Theme instances related to the research aim were identified, coded, and sorted into theme categories. Major topics discussed included teen issues, family support, intervention implementation-related concerns, and curriculum content. Teen issues included dealing with peer pressure, avoiding emotional eating, and support from friends. Many participants thought it should be the teen's choice to involve parents. Confidentiality was the most commonly identified potential barrier to implementation. Recommendations for nutrition and physical activity curriculum content focused on concrete, practical strategies. Results of this research provided insight into stakeholder's needs and perceptions regarding the content and structure of a school nurse-delivered intervention to treat adolescent overweight and obesity. Findings were used in the design and implementation of intervention protocols and materials.
    Full-text · Article · Sep 2011 · Journal of nutrition education and behavior
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    ABSTRACT: Evaluate a computer-assisted telephone counseling (CATC) decision aid for men considering a prostate specific antigen (PSA) test. 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. 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 man's 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. The intervention provides realistic, unbiased and effective decision support for men facing a difficult and confusing decision. Our intervention could potentially replace a discussion of PSA testing with the PCP for most men.
    Full-text · Article · Feb 2011 · Patient Education and Counseling
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    Mary E. Piorun · Jane Fama · Elaine Russo Martin · Nancy R. LaPelle
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    ABSTRACT: Objective: With the closing of the reference desk and implementation of a single service point, librarians have more time to engage in outreach. However, questions remain. What does management mean by outreach? What skills are needed to conduct outreach? The objectives of this study are to: (1) reach a common definition of outreach; (2) identify skills needed to perform outreach. Methods: Focus groups were conducted with librarians from three departments (clinical services, research, and technology initiatives) to gain an understanding of initial perceptions of the outreach function and work currently perceived as outreach. Findings from a cross-group analysis were validated with participants and used to inform a definition of outreach and a continuum of outreach activities requiring increasing skill levels. The skills and tools needed to perform outreach activities at each stage of the continuum were identified and cross-group collaboration will be used to develop tools and acquire needed skills. Results: Using a working definition of outreach detailed in the continuum (basic, relationship building, and partnering), librarians tracked outreach activities and mapped them to the continuum for three months. Through discussion, it became clear to librarians where current activities fell, where they needed to concentrate future efforts, and what strategies to use to move from basic interactions to relationship building and then to partnering. The continuum and tracking logs served as a data source for strategic planning and to assist staff with individual goal setting. Librarians found the tracking log to be cumbersome, but the benefits to management were evident. Conclusion: Tracking and categorizing the defined outreach activities is useful to raise awareness of the different types of outreach activity and identify areas for skill development. In the future tracking logs will be streamlined and automated. Presented at the Medical Library Association Annual Meeting on May 23, 2010, in Washington, DC.
    Preview · Article · May 2010
  • M. Costanza · R. Luckmann · M. White · M. Rosal · N. LaPelle · C. Cranos

    No preview · Article · Feb 2010 · Cancer Research
  • Judith Savageau · Roger Luckmann · Nancy LaPelle
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    ABSTRACT: BACKGROUND: The treatment of noncancer chronic pain (NCCP) with opioids has become popular, but knowledge of long-term effectiveness and adverse effects is limited. Investigations of self-reported experiences with pain and opioids over long periods may increase our understanding of the benefits and risks of long-term opioid therapy. METHODS: All patients 18+ years in two primary care practices who had been prescribed opioids for NCCP continuously for 1 year or more were identified (n=182). A survey about their experience with NCCP and opioids was mailed to a systematic sample stratified by provider (n=107). The survey included items on pain characteristics and treatments, opioid use, response, and adverse effects, and physical function. Subjects were also asked to participate in a telephone interview about their opioid experiences and to approve access to their medical records. RESULTS: 46 surveys were returned (44% response rate), 42 patients were interviewed, and 35 medical records were abstracted. 90% of patients reported lower back pain (76% for 5+ years), 37% reported fibromyalgia, and > 60% reported hip and/or knee pain. 61% reported taking long and short acting opioids; 33% had started daily opioids 10+ years ago. On a scale from 0-10, 77% reported an average pain intensity of 6-8, 11% a level of 9-10. 28% rated opioids very effective' and 67% somewhat effective' in controlling pain. 74% reported opioids improved their ability to perform moderate activities. 87% agreed the benefits of opioids outweighed negative effects. Respondents reported several adverse opioid effects occurring sometimes' or often': constipation (59%), drowsiness (58%), fatigue (50%), sweating (46%), and nausea (30%). In interviews, a majority stated that relief from pain was the first thing about opioids that came to mind; most acknowledged improved quality of life related to opioids; and many reported negative opioid-related experiences including discomfort with the need for opioids and fear of addiction. CONCLUSION: Qualitative and quantitative analyses confirm that most patients with NCCP receiving opioids credit them with providing several important benefits, but by several measures the perceived effectiveness of opioids varies widely. Adverse effects from, and negative attitudes about, opioids are common. Modifications of opioid type and dose and patient education have potential for reducing negative experiences with opioids and improving pain control in the primary care setting. This study raises interesting questions about measuring and interpreting variations in opioid prescribing and the need for larger studies aimed at providing more objective evidence of long-term opioid effectiveness.
    No preview · Conference Paper · Nov 2009
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    ABSTRACT: BACKGROUND: Effective interventions are needed for women long overdue for screening mammography. PURPOSE: The purpose of this study is to pilot test an intervention for motivating overdue women to receive a mammogram. METHODS: Subjects aged 45-79 without a mammogram in > or =27 months and enrolled in study practices were identified from claims data. The intervention included a mailed, educational booklet, computer-assisted barrier-specific tailored counseling and motivational interviewing, and facilitated, short-interval mammography scheduling. RESULTS: Of 127 eligible women, 45 (35.4%) agreed to counseling and data collection. Most were > or =3 years overdue. Twenty-six (57.8%) of the counseled women got a mammogram within 12 months. Thirty-one (72.1%) of 43 counseled women moved > or =1 stage closer to screening, based on a modified Precaution Adoption Process Model. CONCLUSION: It is feasible to reach and counsel women who are long overdue for a mammogram and to advance their stage of adoption. The intervention should be formally evaluated in a prospective trial comparing it to control or to proven interventions.
    No preview · Article · Jun 2009 · Annals of Behavioral Medicine
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    ABSTRACT: We present a clinimetric assessment of the Movement Disorder Society (MDS)-sponsored revision of the Unified Parkinson's 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 Parkinson's disease from 39 sites. We compared the two scales using correlative techniques and factor analysis. The MDS-UPDRS showed high internal consistency (Cronbach's alpha = 0.79-0.93 across parts) and correlated with the original UPDRS (rho = 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.
    Full-text · Article · Nov 2008 · Movement Disorders
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    ABSTRACT: Purpose To explore parent-reported economic barriers to adopting obesity prevention recommendations for their children. Methods We conducted 4 focus groups (2 English, 2 Spanish) among a total of 19 parents of overweight (BMI ³ 85th percentile) children aged 5-17 years. The main discussion focused on 7 types of advice pediatricians often give: reducing TV watching, removing TV from child’s bedroom, increasing physically active games, participating in community or school-based athletics, walking to school, walking more in general, and eating less fast food. Parents were asked to discuss what factors would make each type of advice more difficult (barriers) or easier (facilitators) to implement. Participants were also asked about the relative importance of economic (time and dollar costs/savings) barriers and facilitators if these were not brought into the discussion unprompted. All focus groups were audiotaped and transcribed. Spanish groups were translated into English during transcription. We conducted qualitative analysis using the template organizing style. We did a topic by topic thematic analysis across focus groups within the English-speaking and Spanish-speaking population segment and a cross-population segment thematic analysis for each major theme. Results Parents identified many barriers but few facilitators to adopting advice for nutrition and physical activity for their children. Commonly cited barriers were child’s preference for existing behaviors, ensuring parity among household members, lack of commitment from family members, and competing interests within the household. Members of all groups mentioned time and dollar costs, particularly time costs, but they were not the most frequently cited barriers. Lack of transportation, insufficient information, difficulty monitoring, and suboptimal neighborhood safety were also less frequently cited barriers. Facilitators identified included education/support and the availability of acceptable alternatives. Parents in all groups cited cultural beliefs/behaviors about food. Cultural beliefs about weight norms were cited in the Spanish-speaking group only; cultural beliefs about physical activity norms were cited in the English-speaking group only. Conclusions Parents identify numerous barriers to adopting obesity prevention recommendations, most notably child and family preferences and resistance to change, but also economic barriers. Successful intervention programs need to consider how to overcome various types of barriers, including economic, during program development.
    No preview · Conference Paper · Oct 2008
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    ABSTRACT: Few studies have related stages of mammography screening nonadherence with the rationale used by overdue women. 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. 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. Stage-based educational strategies may benefit by tailoring interventions to these 6 decision levels.
    Full-text · Article · Feb 2008 · Journal of Cancer Education

  • No preview · Article · Jan 2008 · Movement Disorders

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