Development of fidelity of delivery and enactment measures for interventions in communication disorders

OBJECTIVES: This study was part of a process evaluation for a single-blind, randomized controlled pilot study comparing Better Conversations with Primary Progressive Aphasia (BCPPA), an approach to communication partner training, with no speech and language therapy treatment. It was necessary to explore fidelity of delivery (delivery of intervention components) and intervention enactment (participants' use of intervention skills in the form of conversation behaviours comprising facilitators, that enhance the conversational flow, and barriers, that impeded the flow of conversation). This study aimed to: (1) Outline an adapted methodological process that uses video observation, to measure both fidelity of delivery and enactment. (2) Measure the extent to which the BCPPA pilot study was delivered as planned, and enacted. DESIGN: Observational methods were used alongside statistical analysis to explore the fidelity of intervention and enactment using video recordings obtained from the BCPPA pilot study. METHODS: A 5-step methodology, was developed to measure fidelity of delivery and enactment for the BCPPA study using video-recorded data. To identify delivery of intervention components, a random sample of eight video recorded and transcribed BCPPA intervention sessions was coded. To examine the enactment of conversation behaviours, 108 transcribed 10 -min-video recorded conversations were coded from 18 participants across the control and intervention group. RESULTS: Checklists and guidelines for measurement of fidelity of treatment delivery and coding spreadsheets and guidelines for measurement of enactment are presented. Local collaborators demonstrated 87.2% fidelity to the BCPPA protocol. Participants in the BCPPA treatment group increased their use of facilitator behaviours enacted in conversation from a mean of 13.5 pre-intervention to 14.2 post-intervention, whilst control group facilitators decreased from a mean of 15.5 to 14.4, over the same timescale. CONCLUSIONS: This study proposes a novel and robust methods, using video recorded intervention sessions and conversation samples, to measure both fidelity of intervention delivery and enactment. The learnings from this intervention are transferable to other communication interventions

Results from a randomised controlled pilot study of the Better Conversations with Primary Progressive Aphasia (BCPPA) communication partner training program for people with PPA and their communication partners

BACKGROUND: There has been a growing focus on functional communication interventions for primary progressive aphasia (PPA). These interventions aim to support individuals to participate in life situations. One such intervention, communication partner training (CPT) aims to change conversation behaviours in both the person with PPA and their communication partner (CP). CPT has a growing evidence base in stroke aphasia; however, these programmes are not designed to meet the needs of people with progressive communication difficulties. To address this, the authors developed a CPT program entitled Better Conversations with PPA (BCPPA) and undertook a pilot trial to establish for a future full trial; predicted recruitment rates, acceptability, an assessment of treatment fidelity and an appropriate primary outcome measure. METHODOLOGY: This was a single-blind, randomised controlled pilot study comparing BCPPA to no treatment, delivered across 11 National Health Service Trusts in the UK. A random sample of eight recordings of local collaborators delivering the intervention were analysed to examine fidelity. Participants completed feedback forms reporting on acceptability. Pre- and post-intervention measures targeted conversation behaviours, communication goals and quality of life. RESULTS: Eighteen people with PPA and their CPs (9 randomised to BCPPA, 9 randomised to no treatment) completed the study. Participants in the intervention group rated BCPPA positively. Treatment fidelity was 87.2%. Twenty-nine of 30 intervention goals were achieved or over-achieved and 16 of 30 coded conversation behaviours demonstrated change in the intended direction. The Aphasia Impact Questionnaire was identified as the preferred outcome measure. CONCLUSION: The first randomised controlled UK pilot study of a CPT program for people with PPA and their families demonstrates BCPPA is a promising intervention. The intervention was acceptable, treatment fidelity high and an appropriate measure identified. Results of this study indicate a future RCT of BCPPA is feasible. TRIAL REGISTRATION: Registered 28/02/2018 ISRCTN10148247

Speech and language therapy for primary progressive aphasia: Referral patterns and barriers to service provision across the UK

Objective: To assess the extent of UK speech and language therapy engagement in assessment and management of primary progressive aphasia, determine the factors contributing to any shortfall and explore a gap in the research literature on current speech and language therapy practices with people with primary progressive aphasia. // Methods: A 37-item, pilot-tested survey was distributed electronically via clinical networks and through the Royal College of Speech and Language Therapists. Survey items included questions on intervention approaches, referral numbers and demographics, referral sources and access to services. // Results: One hundred and five speech and language therapists completed the survey. Over the previous 24 months, respondents reported seeing a total of 353 people with primary progressive aphasia (an average of 3.27 per speech and language therapist). Neurologists were the most commonly reported referrers to speech and language therapy (22.5%). Seventy-eight percent of respondents reported that people with primary progressive aphasia experienced barriers to accessing speech and language therapy. Key barriers were a lack of referrer awareness of a speech and language therapist’s role, and restrictive eligibility criteria for services. // Conclusions: This study highlighted inequities in access to speech and language therapy for people with primary progressive aphasia. The medical and speech and language therapy professions need to develop appropriate care pathways for people with primary progressive aphasia. Speech and language therapists have a duty to develop a relevant evidence base for speech and language interventions for people with primary progressive aphasia

The ‘Better Conversations with Primary Progressive Aphasia (BCPPA)’ program for people with PPA (Primary Progressive Aphasia): Protocol for a randomised controlled pilot study

Background: Primary progressive aphasia is a language-led dementia, often associated with frontotemporal dementia. It presents as insidious deterioration of language skills (e.g. naming objects and understanding complex sentences), with relative sparing of cognitive skills initially. There is little research examining the effectiveness of communication skills training for primary progressive aphasia, yet speech and language therapists (SLTs) report regularly using this in clinical practice. ‘Better Conversations with Primary Progressive Aphasia’ has potential to reduce barriers and increase facilitators to conversation and consequently improve confidence in communication and quality of life for people living with primary progressive aphasia and their conversation partners. The aim of this pilot study is to examine the feasibility of running a trial of the ‘Better Conversations with Primary Progressive Aphasia’ intervention. Methods: A single blind, randomised controlled pilot study will recruit 42 participants with primary progressive aphasia and their conversation partners across seven UK National Health Service Trusts. Participants will be randomised on a 1:1 basis, stratified by site, to receive either the ‘Better Conversations with Primary Progressive Aphasia’ intervention (21 couples) or no speech and language therapy treatment (21 couples). Participants are recruited by SLTs who will conduct pre-intervention assessment (week 1) and deliver the intervention (weeks 2 to 5). Junior researchers, who are blinded to allocation, will complete post-intervention measures (week 6). SLTs complete 9 h of training to prepare them to deliver the intervention. The primary objective of the study is to establish for a phase III effectiveness study whether the program can be delivered as intended in a UK National Health Service setting. Specifically, it will establish (1) the acceptability of randomisation, (2) an assessment of treatment fidelity to determine necessary levels of SLT training, (3) the most appropriate primary outcome measure, (4) sample size requirements, (5) predicted patient recruitment and retention rates and (6) refined inclusion criteria. Discussion: Insights from this study will be of relevance to guide development of future research and in particular, trials of therapeutic interventions in PPA, as well as for clinical care for this population. Trial registration: Retrospectively registered 28/02/2018 ISRCTN10148247

Bear Steans Warren Spector e-mail message to Mary Kay Scucci

These are internal communications of employees of Bear Stearns Companies, Inc. during the Global Financial Crisis

The narrow-sense and common single nucleotide polymorphism heritability of early repolarization.

BACKGROUND: Early repolarization (ER) is a risk marker for sudden cardiac death. Higher risk is associated with horizontal/descending ST-segment ER in the inferior or inferolateral ECG leads. Studies in family cohorts have demonstrated substantial heritability for the ER pattern, but genome-wide association studies (GWAS) have failed to identify statistically significant and replicable genetic signals. METHODS AND RESULTS: We assessed the narrow-sense and common single nucleotide polymorphism (SNP) heritability of ER and ER subtypes using ECG data from 5829 individuals (TwinsUK, BRIGHT and GRAPHIC cohorts). ER prevalence was 8.3%. In 455 monozygous vs 808 dizygous twin pairs, concordances and twin correlations for ER subtypes (except horizontal/descending ST-segment ER) were higher and familial resemblance (except notched ER) was significant. Narrow-sense heritability estimates derived from 1263 female twin pairs using the structural equation program Mx ranged from 0.00-0.47 and common SNP heritability estimates derived from 4009 unrelated individuals of both sexes using Genome-wide Restricted Maximum Likelihood (GREML) ranged from 0.00-0.36, but none were statistically significant. CONCLUSION: From our data, ER shows limited genetic predisposition. There appears to be significant environmental influence and these modest narrow-sense and common SNP heritability estimates may explain why previous GWAS have been unsuccessful