The increasing incidence of aging adults with cognitive-communication impairments and demand for services that enhance the quality of life of this population necessitates examination of the evidence-based strategies that hold the most promise in producing desired quality-of-life outcomes. The adoption of person-centered care approaches in health care (Kitwood, 1997) allows for a better understanding of how to include the person with cognitive-communication impairment in the process of identifying communication needs, developing intervention approaches, and modifying strategies as needs change. The continuum of dementia severity and the cognitive-communication characteristics at each stage are outlined as a guide for selecting compensatory communication supports to fit changing needs. Environmental features and the training of caregivers are important components of a person-centered care model that aims to ensure that individuals with dementia are respected and can live fulfilling lives.
Purpose: Dementia from Alzheimer's disease (AD) is characterized primarily by a significant decline in memory abilities; however, language abilities are also commonly affected and may precede the decline of other cognitive abilities. To study the progression of language, there is a need for open-access databases that can be used to build algorithms to produce translational models sensitive enough to detect early declines in language abilities. DementiaBank is an open-access repository of transcribed video/audio data from communicative interactions from people with dementia, mild cognitive impairment (MCI), and controls. The aims of this tutorial are to (a) describe the newly established standardized DementiaBank discourse protocol, (b) describe the Delaware corpus data, and (c) provide examples of automated linguistic analyses that can be conducted with the Delaware corpus data and describe additional DementiaBank resources. Method: The DementiaBank discourse protocol elicits four types of discourse: picture description, story narrative, procedural, and personal narrative. The Delaware corpus currently includes data from 20 neurotypical adults and 33 adults with MCI from possible AD who completed the DementiaBank discourse protocol and a cognitive–linguistic battery. Language samples were video- and audio-recorded, transcribed, coded, and uploaded to DementiaBank. The protocol materials and transcription programs can be accessed for free via the DementiaBank website. Results: Illustrative analyses show the potential of the Delaware corpus data to help understand discourse metrics at the individual and group levels. In addition, they highlight analyses that could be used across TalkBank's other clinical banks (e.g., AphasiaBank). Information is also included on manual and automatic speech recognition transcription methods. Conclusions: DementiaBank is a shared online database that can facilitate research efforts to address the gaps in knowledge about language changes associated with MCI and dementia from AD. Identifying early language markers could lead to improved assessment and treatment approaches for adults at risk for dementia.
Aims Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. Methods We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. ResultsThe database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. Discussion Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. Systematic review registration PROSPERO No. CRD42018103179 Keywords Proxy measures • Proxy-reported outcomes • Outcome measures • Quality of life • Systematic review * Jessica K. Roydhouse
Aims Many large-scale population-based surveys, research studies, and clinical care allow for inclusion of proxy reporting as a strategy to collect outcomes when patients are unavailable or unable to provide reliable self-report. Prior work identified an absence of methodological guidelines regarding proxy reporting in adult populations, including who can serve as a proxy, and considerations for data collection, analysis, and reporting. The primary objective of this work by the ISOQOL Proxy Task Force was to review documents and clinical outcome assessment measures with respect to proxy reporting and to develop, through consensus, considerations for proxy reporting. Methods We assembled an international group with clinically relevant and/or methodological expertise on proxy use in adult populations. We conducted a targeted review of documentation based on regulatory, non-regulatory, professional society, and individual measure sources. Using a standardized collection form, proxy-related information was extracted from each source including definitions of a proxy, characteristics of a proxy, domains addressable or addressed by a proxy, and observer-reporting. Results The definition of proxy was inconsistent across 39 sources, except regulatory documents which defined a proxy as a person other than the patient who reports on an outcome as if she/he were the patient. While proxy report was discouraged in regulatory documentation, it was acknowledged there were instances where self-report was impossible. Many documentation sources indicated proxies would be well-justified in certain contexts, but did not indicate who could act as a proxy, when proxies could be used, what domains of patient health they could report on, or how data should be reported. Observer-reported outcomes were typically defined as those based on observed behaviors, however there was not a consistent differentiation between proxy and observer reporting. Based on information extracted from these resources, we developed a checklist of considerations when including proxy-reported measures or using proxies in study design, data collection, analysis, interpretation and reporting of proxy reported data. Conclusion Our targeted review highlights a lack of clarity in capturing, interpreting and reporting data from proxies in adult populations. We provide a checklist of considerations to assist researchers and clinicians with including proxies in research studies and clinical care. Lastly, our review identified areas where further guidance and future research are necessary.
Background Patient-reported outcome (PRO) measures produce scores that do not always have obvious clinical meaning. The PRO-bookmarking procedure is a new and promising way to make PRO measures more meaningful and interpretable. However, the materials and procedures of the task may benefit from adaptations to be more accessible to individuals with cognitive and language disorders. Aims This study aims to provide an overview of the iterative refinement process used to modify the materials and procedures of the PRO-bookmarking task so that they are more accessible to adults with acquired cognitive and language impairments. Method and Procedures Our team of health psychologists, neuropsychologists, and speech-language pathologists (SLPs) conducted two focus groups with SLPs and care partners of people with aphasia using the same PRO-bookmarking materials and procedures as previous reports. These PRO-bookmarking materials and procedures were then refined iteratively based on discussion with those who participated in focus groups and among the research team, and three more times in the course of 16 additional focus groups of different stakeholders: people with Parkinson's disease, aphasia, or traumatic brain injury; care partners of people with those conditions; and SLPs who have experience with those, and other adult-acquired conditions. Outcomes and Results The PRO-bookmarking materials and procedures underwent four iterations to make them clearer, simpler, and more accessible. For example, the materials included more structured text and graphic supports where appropriate and the procedures were clustered into smaller discrete tasks and displayed graphically when possible and appropriate. Conclusions PRO-bookmarking materials and procedures were made simpler and more structured to increase their accessibility to adults with cognitive and language impairments. In fact, these adaptations made the tasks simpler and clearer for all types of stakeholders.
Patient-reported outcome measures (PROMs) assess health outcomes from the patient's perspective. The National Institutes of Health has invested in the creation of numerous PROMs that comprise the PROMIS, Neuro-QoL, and TBI-QoL measurement systems. Some of these PROMs are potentially useful as primary or secondary outcome measures, or as contextual variables for the treatment of adults with cognitive/language disorders. These PROMs were primarily created for clinical research and interpretation of group means. They also have potential for use with individual clients; however, at present there is only sparse evidence and direction for this application of PROMs. Previous research by Cohen and Hula (2020) described how PROMs could support evidence-based practices in speech-language pathology. This companion article extends upon that work to present clinicians with implementation information about obtaining, administering, scoring, and interpreting PROMs for individual clients with cognitive/language disorders. This includes considerations of the type and extent of communication support that is appropriate, implications of the relatively large measurement error that accompanies individual scores and pairs of scores, and recommendations for applying minimal detectable change values depending on the clinician's desired level of measurement precision. However, more research is needed to guide the interpretation of PROM scores for an individual client.
Purpose The aims of this study were (a) to examine the effects of a structured external memory aid (EMA) treatment for individuals with possible mild neurocognitive disorder on their use of EMAs to compensate for memory impairments, (b) to examine the extent that improved functional EMA use maintains following intervention, and (c) to measure the effects of treatment on participants' self-reported memory skills. Method The researchers employed a multiple-baseline design across subjects within dyads. Data were collected using the Roleplay Assessment. The graphed data were analyzed visually at baseline, treatment, and maintenance sessions. In addition, the researchers examined the participants' self-report of memory skills through an experimental pre–post design. Results Following intervention, a functional strategy use treatment effect was observed. All 6 participants' graphs revealed a large positive change in level, with no overlapping data. Statistical analyses also supported the positive effects of treatment. The participants maintained the use of strategies for 1–3 months. The participants self-reported a statistically significant increase in strategy use following intervention. Conclusions With treatment, individuals with mild memory impairments can learn to use EMAs to facilitate enhanced performance on functional activities. This study provides evidence for the importance of documenting individual treatment effects and using a functional measure to examine compensatory strategy use in everyday tasks.
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