Adherence to Non-Pharmacological Interventions in Parkinson's Disease: A Rapid Evidence Assessment of the Literature.

Background: Low adherence to non-pharmacological interventions can impact treatment effectiveness. Yet, there is limited information on adherence barriers and facilitators to non-pharmacological interventions in Parkinson's disease (PD). Objective: 1) To examine the quality of adherence reporting and 2) to identify key determinants of adherence to PD non-pharmacological interventions. Methods: A rapid evidence assessment was conducted, following PRISMA guidelines, that included controlled studies of exercise, physiotherapy, occupational therapy, speech-language therapy with explicit reporting of 'adherence' OR 'compliance', published in the last 15 years. Data extracted included: adherence rates, adherence outcomes, and factors associated with adherence. A collaborative thematic analysis was conducted to identify determinants of adherence. Results: The search yielded 2,445 articles of which 114 met criteria for full screening with 45 studies meeting all inclusion criteria. High quality adherence data that aligned with the intervention goals were reported by 22.22%(N = 10) of studies, with the majority reporting attendance/attrition rates only 51.11%(N = 23). Four major themes (34 subthemes) emerged: disease and health, personal, program design, and system and environmental. Conclusions: There has been limited progress in the quality of adherence reporting in PD non-pharmacological interventions over the last decade. Acknowledging this limitation, key determinants of adherence included: alignment with personal beliefs, attitudes, and expectations; the demands of the intervention and worsening disease symptoms and personal/time obligations; and accessibility and safety concerns. Program design elements found to facilitate adherence included: opportunities for social engagement and in-person offerings linked to higher levels of interventionist support, performative feedback, and social reinforcement.

Feasibility of a continuous, multi-sensor remote health monitoring approach in persons living with neurodegenerative disease.

BACKGROUND: Remote health monitoring with wearable sensor technology may positively impact patient self-management and clinical care. In individuals with complex health conditions, multi-sensor wear may yield meaningful information about health-related behaviors. Despite available technology, feasibility of device-wearing in daily life has received little attention in persons with physical or cognitive limitations. This mixed methods study assessed the feasibility of continuous, multi-sensor wear in persons with cerebrovascular (CVD) or neurodegenerative disease (NDD). METHODS: Thirty-nine participants with CVD, Alzheimer's disease/amnestic mild cognitive impairment, frontotemporal dementia, Parkinson's disease, or amyotrophic lateral sclerosis (median age 68 (45-83) years, 36% female) wore five devices (bilateral ankles and wrists, chest) continuously for a 7-day period. Adherence to device wearing was quantified by examining volume and pattern of device removal (non-wear). A thematic analysis of semi-structured de-brief interviews with participants and study partners was used to examine user acceptance. RESULTS: Adherence to multi-sensor wear, defined as a minimum of three devices worn concurrently, was high (median 98.2% of the study period). Non-wear rates were low across all sensor locations (median 17-22 min/day), with significant differences between some locations (p = 0.006). Multi-sensor non-wear was higher for daytime versus nighttime wear (p < 0.001) and there was a small but significant increase in non-wear over the collection period (p = 0.04). Feedback from de-brief interviews suggested that multi-sensor wear was generally well accepted by both participants and study partners. CONCLUSION: A continuous, multi-sensor remote health monitoring approach is feasible in a cohort of persons with CVD or NDD.

Spoken Discourse Assessment and Analysis in Aphasia: An International Survey of Current Practices.

Purpose Spoken discourse analysis is commonly employed in the assessment and treatment of people living with aphasia, yet there is no standardization in assessment, analysis, or reporting procedures, thereby precluding comparison/meta-analyses of data and hindering replication of findings. An important first step is to identify current practices in collecting and analyzing spoken discourse in aphasia. Thus, this study surveyed current practices, with the goal of working toward standardizing spoken discourse assessment first in research settings with subsequent implementation into clinical settings. Method A mixed-methods (quantitative and qualitative) survey was publicized to researchers and clinicians around the globe who have collected and/or analyzed spoken discourse data in aphasia. The survey data were collected between September and November 2019. Results Of the 201 individuals who consented to participate, 189 completed all mandatory questions in the survey (with fewer completing nonmandatory response questions). The majority of respondents reported barriers to utilizing discourse including transcription, coding, and analysis. The most common barrier was time (e.g., lack of time). Respondents also indicated that there was a lack of, and a need for, psychometric properties and normative data for spoken discourse use in the assessment and treatment of persons with aphasia. Quantitative and qualitative results are described in detail. Conclusions The current survey study evaluated spoken discourse methods in aphasia across research and clinical settings. Findings from this study will be used to guide development of process standardization in spoken discourse and for the creation of a psychometric and normative property database. Supplemental Material https://doi.org/10.23641/asha.166395100.

Standardizing Assessment of Spoken Discourse in Aphasia: A Working Group With Deliverables.

Purpose The heterogeneous nature of measures, methods, and analyses reported in the aphasia spoken discourse literature precludes comparison of outcomes across studies (e.g., meta-analyses) and inhibits replication. Furthermore, funding and time constraints significantly hinder collecting test-retest data on spoken discourse outcomes. This research note describes the development and structure of a working group, designed to address major gaps in the spoken discourse aphasia literature, including a lack of standardization in methodology, analysis, and reporting, as well as nominal data regarding the psychometric properties of spoken discourse outcomes. Method The initial initiatives for this working group are to (a) propose recommendations regarding standardization of spoken discourse collection, analysis, and reporting in aphasia, based on the results of an international survey and a systematic literature review and (b) create a database of test-retest spoken discourse data from individuals with and without aphasia. The survey of spoken discourse collection, analysis, and interpretation procedures was distributed to clinicians and researchers involved in aphasia assessment and rehabilitation from September to November 2019. We will publish survey results and recommend standards for collecting, analyzing, and reporting spoken discourse in aphasia. A multisite endeavor to collect test-retest spoken discourse data from individuals with and without aphasia will be initiated. This test-retest information will be contributed to a central site for transcription and analysis, and data will be subsequently openly curated. Conclusion The goal of the working group is to create recommendations for field-wide standards in methods, analysis, and reporting of spoken discourse outcomes, as has been done across other related disciplines (e.g., Consolidated Standards of Reporting Trials, Enhancing the Quality and Transparency of Health Research, Committee on Best Practice in Data Analysis and Sharing). Additionally, the creation of a database through our multisite collaboration will allow the identification of psychometrically sound outcome measures and norms that can be used by clinicians and researchers to assess spoken discourse abilities in aphasia.

Contraception and women over 40 years of age: mixed-method systematic review.

AIM: This paper is a report of a mixed-method systematic review to identify barriers to, and facilitators of, contraceptive needs and choices of women over 40 years old. BACKGROUND: Women over 40 years of age who do not want to conceive have specific needs for contraception to prevent unwanted, unplanned and unintended pregnancies prior to menopause. DATA SOURCES: Six databases were searched for published and grey literature from September 1997 to September 2007, along with the Cochrane Central Register of Controlled Trials. The Internet, professional networks and hand searching were also used. REVIEW METHODS: Mixed-method synthesis using Evidence for Policy and Practice Information and Co-ordinating Centre phased design. FINDINGS: Guidelines to inform clinical decision-making were located but did not take account of age-related social factors affecting women's choices or local service availability. Women's access to services and contraceptive choices were influenced by educational level, general awareness of available methods, fear of side effects, women's social standing, religious and cultural beliefs, personal control, and confidentiality. The main factors influencing compliance and continuation rates were knowledge, positive experience and confidence, unacceptable side effects and safety concerns, information, support and advice, and ongoing husband/partner influences. CONCLUSION: The utility of clinical guidelines could be improved by incorporating socio-cultural factors and women's views. Novel approaches to evidence translation and facilitation are required. Focusing on user-led, age-appropriate services rather than a 'one size fits all' approach could improve the contraceptive choices and outcomes for women over 40 years old.