What Huntington's Disease Patients Say About Their Illness: An Online Direct-to-Participant Pilot Study.

Background: Direct-to-participant online reporting facilitates the conduct of clinical research by increasing access and clinically meaningful patient engagement. Objective: We assessed feasibility of online data collection from adults with diagnosed Huntington's disease (HD) who directly reported their problems and impact in their own words. Methods: Data were collected online from consenting United States residents who self-identified as 1) having been diagnosed with Huntington's disease, 2) able to ambulate independently, and 3) self-sufficient for most daily needs. Data for this pilot study were collected using the Huntington Study Group myHDstory online research platform. The Huntington Disease Patient Report of Problems (HD-PROP), an open-ended questionnaire, was used to capture verbatim bothersome problems and functional impact. Natural language processing, human-in-the-loop curation of verbatim reports involving clinical and experience experts, and machine learning classified verbatim-reports into clinically meaningful symptoms. Results: All 8 questionnaires in the online pilot study were completed by 345 participants who were 60.9% men, 34.5±9.9 (mean±SD) years old, and 9.5±8.4 years since HD diagnosis. Racial self-identification was 46.4% Caucasian, 28.7% African American, 15.4% American Indian/Alaska Native, and 9.5% other. Accuracy of verbatim classification was 99%. Non-motor problems were the most frequently reported symptoms; depression and cognitive impairment were the most common. Conclusions: Online research participation was feasible for a diverse cohort of adults who self-reported an HD diagnosis and predominantly non-motor symptoms related to mood and cognition. Online research tools can help inform what bothers HD patients, identify clinically meaningful outcomes, and facilitate participation by diverse and under-represented populations.

Understanding implementation context and social processes through integrating Normalization Process Theory (NPT) and the Consolidated Framework for Implementation Research (CFIR).

BACKGROUND: For successful implementation of an innovation within a complex adaptive system, we need to understand the ways that implementation processes and their contexts shape each other. To do this, we need to explore the work people do to make sense of an innovation and integrate it into their workflow and the contextual elements that impact implementation. Combining Normalization Process Theory (NPT) with the Consolidated Framework for Implementation Research (CFIR) offers an approach to achieve this. NPT is an implementation process theory that explains how changes in the way people think about and use an innovation occurs, while CFIR is a framework that categorizes and describes contextual determinants across five domains that influence implementation. We demonstrate through a case example from our prior research how we integrated NPT and CFIR to inform the development of the interview guide, coding manual, and analysis of the findings. METHODS: In collaboration with our stakeholders, we selected NPT and CFIR to study the implementation process and co-developed an interview guide to elicit responses that would illuminate concepts from both. We conducted, audio-recorded, and transcribed 28 interviews with various professionals involved with the implementation. Based on independent coding of select transcripts and team discussion comparing, clarifying, and crystallizing codes, we developed a coding manual integrating CFIR and NPT constructs. We applied the integrated codes to all interview transcripts. RESULTS: Our findings highlight how integrating CFIR domains with NPT mechanisms adds explanatory strength to the analysis of implementation processes, with particular implications for practical strategies to facilitate implementation. Multiple coding across both theoretical frames captured the entanglement of process and context. Integrating NPT and CFIR enriched understandings of how interactions between implementation processes and contextual determinants shaped each other during implementation. CONCLUSION: The integration of NPT and CFIR provides guidance to identify and explore complex entangled interactions between agents, processes, and contextual conditions within and beyond organizations to embed innovations into routine practices. Nuanced understandings gained through this approach moves understandings beyond descriptions of determinants to explain how change occurs or not during implementation. Mechanism-based explanations illuminate concrete practical strategies to support implementation.

A cross-sectional study to identify the distribution and characteristics of licensed and unlicensed private drug shops in rural Eastern Uganda to inform an iCCM intervention to improve health outcomes for children under five years.

INTRODUCTION: Malaria, pneumonia and diarrhea are leading causes of death in young children in Uganda. Between 50-60% of sick children receive treatment from the private sector, especially drug shops. There is an urgent need to improve quality of care and regulation of private drug shops in Uganda. This study was conducted to determine the distribution, the licensing status and characteristics of drug shops in four sub-districts of Kamuli district. METHODS: This study was part of a pre-post cross sectional study that examined the implementation of an integrated Community Case Management (iCCM) intervention for common childhood illness in rural private drug shops in Kamuli District in Eastern Uganda. This mapping exercise used a snowball sampling technique to identify licensed and unlicensed drug shops and collect information about their characteristics. Data were collected using a questionnaire. GPS data were collected for all drug shops. ANALYSIS: Quantitative data were analyzed using SPSS for descriptive statistics. Open ended questions were entered into NVivo 10 and analyzed using thematic analysis strategies. RESULTS: In total, 215 drug shops in 284 villages were located. Of these, 123 (57%) were open and consented to an interview. Only 12 (10%) drug shops were licensed, 93 (76%) were unlicensed, and the licensing status of 18 (15%) was unknown. Most respondents were the owner of the drug shop (88%); most drug sellers reported their qualification as nursing assistants (70%). Drug sellers reported licensing fees and costs of contracting an "in-charge" as barriers to licensing. Nearly all drug shops sold drugs for malaria (91%) and antibiotics (79%).

The 5As team intervention: bridging the knowledge gap in obesity management among primary care practitioners.

BACKGROUND: Despite opportunities for didactic education on obesity management, we still observe low rates of weight management visits in our primary care setting. This paper describes the co-creation by front-line interdisciplinary health care providers and researchers of the 5As Team intervention to improve obesity prevention and management in primary care. METHODS: We describe the theoretical foundations, design, and core elements of the 5AsT intervention, and the process of eliciting practitioners' self-identified knowledge gaps to inform the curricula for the 5AsT intervention. Themes and topics were identified through facilitated group discussion and a curriculum relevant to this group of practitioners was developed and delivered in a series of 12 workshops. RESULT: The research question and approach were co-created with the clinical leadership of the PCN; the PCN committed internal resources and a practice facilitator to the effort. Practice facilitation and learning collaboratives were used in the intervention For the content, front-line providers identified 43 topics, related to 13 themes around obesity assessment and management for which they felt the need for further education and training. These needs included: cultural identity and body image, emotional and mental health, motivation, setting goals, managing expectations, weight-bias, caregiver fatigue, clinic dynamics and team-based care, greater understanding of physiology and the use of a systematic framework for obesity assessment (the "4Ms" of obesity). The content of the 12 intervention sessions were designed based on these themes. There was a strong innovation values fit with the 5AsT intervention, and providers were more comfortable with obesity management following the intervention. The 5AsT intervention, including videos, resources and tools, has been compiled for use by clinical teams and is available online at http://www.obesitynetwork.ca/5As_Team . CONCLUSIONS: Primary care interdisciplinary practitioners perceive important knowledge gaps across a wide range of topics relevant to obesity assessment and management. This description of the intervention provides important information for trial replication. The 5AsT intervention may be a useful aid for primary care teams interested to improve their knowledge of obesity prevention and management. Clinical Trials.gov (NCT01967797).

Alternative seating for young children with Autism Spectrum Disorder: effects on classroom behavior.

A single subject, withdrawal design was used to investigate the effects of therapy balls as seating on engagement and in-seat behavior of young children with Autism Spectrum Disorder (ASD). In addition, social validity was assessed to evaluate teachers' opinions regarding the intervention. During baseline and withdrawal (A phases) participants used their typical classroom seating device (chair, bench or carpet square). During the intervention (B phases) participants sat on therapy balls. Results indicated substantial improvements in engagement and in-seat behavior when participants were seated on therapy balls. Social validity findings indicated that the teachers' preferred the therapy balls. This study suggests therapy balls as classroom seating may facilitate engagement and in-seat behavior and create opportunities to provide effective instruction.

Classroom seating for children with attention deficit hyperactivity disorder: therapy balls versus chairs.

OBJECTIVE: The purpose of this study was to investigate the effects of therapy balls as seating on in-seat behavior and legible word productivity of students with attention deficit hyperactivity disorder (ADHD). Additionally, social validity was assessed to evaluate teacher and student opinions regarding the intervention. METHOD: A single subject, A-B-A-B interrupted time series design was employed across 3 students (2 males, 1 female) with ADHD. The study was conducted in a 4th grade inclusive classroom during daily language arts. During phases 1 and 3, the 3 participants and all other class members sat on chairs (in-seat on chair); during phases 2 and 4, everyone sat on therapy balls (in-seat on ball). Dependent variables were in-seat behavior and legible word productivity. Data were graphed and visually analyzed for differences between phases. RESULTS: Results demonstrated increases in in-seat behavior and legible word productivity for the students with ADHD when seated on therapy balls. Social validity findings indicated that generally the teacher and students preferred therapy balls. CONCLUSION: This study provides evidence that use of therapy balls for students with ADHD may facilitate in-seat behavior and legible word productivity.