Publications

  • [Show abstract] [Hide abstract]
    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.
    Journal of cancer education : the official journal of the American Association for Cancer Education. 11/2014;
  • [Show abstract] [Hide abstract]
    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.
    Movement Disorders Clinical Practice. 08/2014;
  • [Show abstract] [Hide abstract]
    ABSTRACT: The International Parkinson and Movement Disorder Society (MDS)-sponsored revision of the Unified Parkinson's 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).
    Movement Disorders Clinical Practice. 06/2014;
  • [Show abstract] [Hide abstract]
    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.
    Movement Disorders Clinical Practice. 05/2014;
  • Source
    [Show abstract] [Hide abstract]
    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.
    Journal of nutrition education and behavior 09/2011; 44(1):46-54. · 1.36 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    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.
    Patient Education and Counseling 02/2011; 82(2):193-200. · 2.60 Impact Factor
  • [Show abstract] [Hide abstract]
    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.
    137st APHA Annual Meeting and Exposition 2009; 11/2009
  • [Show abstract] [Hide abstract]
    ABSTRACT: BackgroundEffective interventions are needed for women long overdue for screening mammography. PurposeThe purpose of this study is to pilot test an intervention for motivating overdue women to receive a mammogram. MethodsSubjects aged 45–79 without a mammogram in ≥27months 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. ResultsOf 127 eligible women, 45 (35.4%) agreed to counseling and data collection. Most were ≥3years overdue. Twenty-six (57.8%) of the counseled women got a mammogram within 12months. Thirty-one (72.1%) of 43 counseled women moved ≥1 stage closer to screening, based on a modified Precaution Adoption Process Model. ConclusionIt 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.
    Annals of Behavioral Medicine 06/2009; 37(3):343-349. · 4.20 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    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.
    Movement Disorders 12/2008; 23(15):2129-70. · 5.63 Impact Factor
  • [Show abstract] [Hide abstract]
    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.
    The 30th Annual Meeting of the Society for Medical Decision Making; 10/2008
  • [Show abstract] [Hide abstract]
    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.
    Journal of Cancer Education 02/2008; 23(2):114-21. · 0.88 Impact Factor
  • Source
    Movement Disorders 01/2008; 23(15):2129–2170. · 4.56 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: This article presents the revision process, major innovations, and clinimetric testing program for the Movement Disorder Society (MDS)-sponsored revision of the Unified Parkinson's Disease Rating Scale (UPDRS), known as the MDS-UPDRS. The UPDRS is the most widely used scale for the clinical study of Parkinson's 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.
    Movement Disorders 02/2007; 22(1):41-7. · 4.56 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: To identify potentially successful strategies, barriers, and facilitators for health promotion in preschool child care settings. We conducted 6 focus groups including each of the following: parents of children attending child care centers and home-based family child care (2 in English, 1 in Spanish) and directors of child care centers and family child care providers (2 in English, 1 in Spanish). Systematic thematic analysis was conducted to generate themes to address study questions. A total of 24 parents and 45 child care providers, serving predominantly urban, low-income children in Boston, participated. Parents and child care providers agreed that in-person group discussions would be the most effective strategy for providing health education information to parents. Several barriers that could affect implementation emerged. First, some providers expressed frustration toward parents' attitudes about child safety and health. Second, there was diversity of opinion among providers on whether conducting health promotion activities was consistent with their training and role. In addition, literacy, language, and cultural barriers were identified as potential barriers to health promotion in child care. In order to be successful, health promotion strategies in child care settings will need to overcome tensions between providers and parents, allow professional growth of child care providers to serve in a health promotion role, and better integrate external health resources and personnel. Group sessions and peer learning opportunities that are culturally and linguistically sensitive are potentially successful strategies for implementation of health promotion interventions for many parents.
    Ambulatory Pediatrics 11/2006; 6(6):342-6. · 1.60 Impact Factor
  • Source
    Nancy R LaPelle, Jane Zapka, Judith K Ockene
    [Show abstract] [Hide abstract]
    ABSTRACT: 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.
    American Journal of Public Health 09/2006; 96(8):1363-9. · 3.93 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: Movement towards evidence-based practices in many fields suggests that public health (PH) challenges may be better addressed if credible information about health risks and effective PH practices is readily available. However, research has shown that many PH information needs are unmet. In addition to reviewing relevant literature, this study performed a comprehensive review of existing information resources and collected data from two representative PH groups, focusing on identifying current practices, expressed information needs, and ideal systems for information access. Nineteen individual interviews were conducted among employees of two domains in a state health department--communicable disease control and community health promotion. Subsequent focus groups gathered additional data on preferences for methods of information access and delivery as well as information format and content. Qualitative methods were used to identify themes in the interview and focus group transcripts. Informants expressed similar needs for improved information access including single portal access with a good search engine; automatic notification regarding newly available information; access to best practice information in many areas of interest that extend beyond biomedical subject matter; improved access to grey literature as well as to more systematic reviews, summaries, and full-text articles; better methods for indexing, filtering, and searching for information; and effective ways to archive information accessed. Informants expressed a preference for improving systems with which they were already familiar such as PubMed and listservs rather than introducing new systems of information organization and delivery. A hypothetical ideal model for information organization and delivery was developed based on informants' stated information needs and preferred means of delivery. Features of the model were endorsed by the subjects who reviewed it. Many critical information needs of PH practitioners are not being met efficiently or at all. We propose a dual strategy of: 1) promoting incremental improvements in existing information delivery systems based on the expressed preferences of the PH users of the systems and 2) the concurrent development and rigorous evaluation of new models of information organization and delivery that draw on successful resources already operating to deliver information to clinical medical practitioners.
    BMC Public Health 02/2006; 6:89. · 2.08 Impact Factor
  • [Show abstract] [Hide abstract]
    ABSTRACT: Background: Public health challenges can be better addressed if credible information about health risks and effective public health practices is readily available. The need for improved access to evidence-based public health information has been recognized by public health practitioners, researchers, policy makers, and librarians. Objective: To understand the information needs of the public health workforce and to improve access to credible and relevant information for public health practice.Methods: A qualitative study identified how public health professionals currently access information, what barriers they face, and what improvements they need. Nineteen individual interviews were conducted in two state health bureaus - communicable disease control and community health promotion. Follow-on focus groups were conducted to gather additional data on preferences for accessing information.Results: Public health professionals interviewed have a wide variety of needs and use different information sources depending on the areas of public health they work in and the diverse nature of their work. The types of information they use can be arranged in an information needs continuum ranging from early reports of disease outbreaks needed by those dealing with emerging diseases, to published reports, journal articles, systematic reviews, and evidence-based guidelines needed by those working on the prevention and control of well-known diseases and health threats. Information sources used by the participants include news resources, listservs, alert services, journal articles, conference proceedings, and email. The study revealed that public health practitioners face several barriers and limitations to accessing quality information for public health practice. These include lack to time and knowledge to find quality information; feeling bombarded with unfiltered and often duplicative information from listservs; and limited access to grey literature, systematic reviews, and full-text journal articles. Conclusion: Both groups expressed the need for access to information targeted towards their specific public health areas of interest and desired a way to filter information for more efficient access to relevant information. The research team developed a hypothetical model for the delivery and organization of credible and relevant public health information. Some of the participants were not aware of evidence-based public health resources currently available. An outcome of the project that is particularly beneficial to the public health workforce and information professionals is the project's website, http://library.umassmed.edu/ebpph, which provides free online access to public health journals, databases, and evidence-based public health resources identified by the research team. Presentation at the 2006 Medical Library Association Annual Meeting, Phoenix, AZ.
    Elaine Russo Martin. 01/2006;
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: In 1997, the Institute of Medicine called for reform, improved quality and expanded research in end-of-life care. Yet little empirical information about preferences of African Americans has been documented. A community-campus partnership was formed to guide a needs assessment related to end-of-life care in a Southern, urban, African American community. This paper presents focus group findings related to end-of-life and palliative care. A qualitative design of multiple-meeting focus groups was used to explore experiences, preferences, needs, and feelings expressed by family members with at least one relative who had died in a hospital (group 1) or at home (group 2). Sessions were taped and transcribed; themes were identified using systematic analytic procedures. Thematic analysis revealed key concerns related to health care provider communications about end-of-life care and dying. Positive communications empowered and showed respect for patients and family members and recognized the importance of their spiritual beliefs; informed them about resources available to assist dying at home; and, for patients dying in the hospital, treated them with nurturing, compassion, and diligent monitoring of the patient's medical status and needs. Other themes related to end-of-life care issues include preparation, planning, and access. A table of quotes from participants is available from the corresponding author. Findings suggest important clinical implications for clinicians and other health professionals. These voices from the community remind us of the heterogeneity in needs and preferences and challenge us to listen and tailor communication to each patient and their families.
    Journal of Palliative Medicine 07/2005; 8(3):585-92. · 1.89 Impact Factor
  • Source
    Nancy Lapelle
    Field Methods 02/2004; 16(1):85-108. · 1.11 Impact Factor

1 Following View all

17 Followers View all