Understanding the impact of non-alcoholic steatohepatitis with metabolic comorbidities on adults: a real-world qualitative study.

OBJECTIVE: Limited real-world evidence exists to better understand the patient experience of living with symptoms and impacts of non-alcoholic steatohepatitis (NASH). This study aimed to (1) describe patient-reported perspectives of NASH symptoms and impacts on patients' daily lives and (2) develop a patient-centered conceptual NASH model. METHODS: A cross-sectional study using semi-structured qualitative interviews was conducted among adults (≥18 years) in the United States living with NASH. Eligible participants were diagnosed with NASH, had mild to advanced fibrosis (F1-F3), and no other causes of liver disease. The interview guide was informed by a targeted literature review (TLR) to identify clinical signs, symptoms, impacts, and unmet treatment needs of NASH. Participants described their experiences and perspectives around NASH and the symptoms, symptom severity/bother, and impact of NASH on their daily activities. Interviews were audio-recorded and transcribed verbatim for coding and thematic analysis. RESULTS: Twenty participants (age: 42.4 years; female: 50.0%) were interviewed. Participants discussed their experience with NASH symptoms (most frequent: fatigue [75.0%]; weakness/lethargy [70.0%]) and impacts (most frequent: physical and psychological/emotional [70.0% each]; dietary [68.4%]). Participants considered most symptoms to be moderately severe or severe and moderately or highly bothersome. Findings from the TLR and qualitative interviews were incorporated into a conceptual model that describes patient-reported symptoms and impacts of NASH, clinical signs, risk factors, and unmet treatment needs. CONCLUSION: Our study provides insights into patients' perspectives of NASH symptoms and their impact on their daily lives. These findings may guide patient-physician conversations, supporting patient-centered treatment decisions and disease management.

Study findings help to address the gap in current literature about patients' perspectives on NASH and its symptoms as well as its impact on daily life.The study proposes a holistic conceptual model that describes patients' perspectives of living with NASH, including symptoms and their impact, the clinical signs and risk factors of NASH, and the unmet treatment needs of the disease.Healthcare providers can use study findings to inform patient-focused decisions around treatment strategies for NASH.

Expert Consensus on Comprehensive Early Rhythm Control in Addition to Guideline-Based Care for Atrial Fibrillation: A Modified Delphi Survey.

Atrial fibrillation (AF) practice guidelines recommend a rhythm-control strategy to improve symptoms and quality of life, noting the side effects of antiarrhythmic drugs and catheter ablation. Emerging evidence indicates that comprehensive early rhythm control with antiarrhythmic drugs or catheter ablation is associated with a lower risk of adverse cardiovascular outcomes versus the usual care. Using an online modified Delphi survey approach, perspectives and expert consensus among electrophysiologists were examined through a series of ranking and likelihood questions around treatment decision-making on (1) the use of comprehensive early rhythm-control strategies in patients with AF based on guidelines and emerging research and (2) treatment selection factors. A panel of 17 electrophysiologists reached a consensus on using early rhythm control (median 90, interquartile range 14) based on the view that early intervention improved cardiovascular outcomes (mean rank 1.6 of 3, 82% within 1 SD) and symptoms (1.8 of 3, 41%). AF-related symptoms were identified as the most important in making a treatment initiation decision (1.1 of 7, 88%), followed by AF type (2.5 of 7, 82%). Participants were most likely to initiate treatment at AF symptom onset (median 80; interquartile range 6). In making treatment selection decisions, participants ranked short-term/long-term safety (1.9 of 7, 88%) and efficacy (1.8 of 7, 53%) as the top 2 considerations. In conclusion, experts were in favor of early rhythm control; however, additional research is needed to address the role that early rhythm-control strategies play in current AF treatment management algorithms.

Validation of an Adapted Version of the Veterans RAND 12-Item Health Survey for Older Adults Living in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure of physical and mental health status. An adapted version of the VR-12 was developed for use with older adults living in long-term residential care (LTRC) homes in Canada: VR-12 (LTRC-C). This study aimed to evaluate the psychometric validity of the VR-12 (LTRC-C). RESEARCH DESIGN AND METHODS: Data for this validation study were collected via in-person interviews for a province-wide survey of adults living in LTRC homes across British Columbia (N = 8,657). Three analyses were conducted to evaluate validity and reliability: (1) confirmatory factor analyses were conducted to validate the measurement structure; (2) correlations with measures of depression, social engagement, and daily activities were examined to evaluate convergent and discriminant validity; and (3) Cronbach's alpha (r) statistics were obtained to evaluate internal consistency reliability. RESULTS: A measurement model with 2 correlated latent factors (representing physical health and mental health), 4 cross-loadings, and 4 correlated items resulted in an acceptable fit (root-mean-square error of approximation = 0.07; comparative fit index = 0.98). Physical and mental health were correlated in expected directions with measures of depression, social engagement, and daily activities, though the magnitudes of the correlations were quite small. Internal consistency reliability was acceptable for physical and mental health (r > 0.70). DISCUSSION AND IMPLICATIONS: This study supports the use of the VR-12 (LTRC-C) to measure perceived physical and mental health among older adults living in LTRC homes.

Understanding the patient experience of living with notalgia paresthetica: A qualitative interview study.

Background: Notalgia paresthetica (NP) is a chronic sensory neuropathy that causes intense pruritus, typically affecting the upper portion of the back and lasting for months to years. The impacts of pruritus and the full symptom experience are not well documented. Objective: To describe patients' NP symptom experience and the impacts of living with NP-related itch. Methods: Semistructured, one-to-one qualitative telephone interviews were conducted in adults living with NP. The worst itch severity during the previous 24 hours was assessed using an 11-point numerical rating scale. Results: Thirty participants (23 females; aged 41-80 years) completed interviews. Seventeen NP-related symptoms were described, with daily itch being the most common. Participants' itch ranged from severe to very severe (50%) and was experienced for a median of 2.8 years. Most (73%) participants were not receiving treatment for NP at the time of the study. Other reported symptoms included skin pain or sensitivity and secondary symptoms from itching (skin discoloration, lumps or bumps, bleeding or scabbing). NP-related itch was frequently reported to affect mood, interfere with sleep, and disrupt self-care. Limitations: Only English-speaking participants living in the United States were included. Conclusion: This study highlights the patient experience of living with NP and findings reveal that there remains an unmet need for effective therapeutic options to address NP-related itch.

Measuring Health Status in Long-Term Residential Care: Adapting the Veterans RAND 12 Item Health Survey (VR-12©).

Objectives: Measuring the perceived mental and physical health status of older adults living in long-term residential care (LTRC) is central to patient-centered care. This study examined the qualitative content validity of the Veterans RAND 12 Item Health Survey (VR-12) for LTRC and, based on the findings, the authors developed an adapted version of the generic patient-reported outcome measure for this population.Methods: Content validity was evaluated in two steps: (1) initial resident feedback (n = 9) and research team consensus discussions and (2) cognitive interviews with residents (n = 18) and a research team consensus discussion. The cognitive interviews examined comprehension, acceptability, and relevance of the VR-12 items.Results: Two VR-12 items had limited acceptability in the LTRC setting, the reference to "work" in items was irrelevant to residents, and the lack of a frame of reference ("During the past week … ") impacted comprehension of several items.Conclusions: Study findings informed the development of an adapted version of the VR-12 for older adults living in Canadian LTRC homes and provided content validity evidence regarding its relevance and appropriateness for this population.Clinical implications: Measuring the health status of older adults living in LTRC can help to monitor changes in health status over time and support person-centered care.

Use of the Evaluating Respiratory Symptoms™ in COPD as an Outcome Measure in Clinical Trials: A Rapid Systematic Review.

RATIONALE: Patients with chronic obstructive pulmonary disease (COPD) struggle with respiratory symptoms that impair their daily activities and quality of life. Understanding a treatment's ability to relieve symptoms requires precise assessment. The Evaluating Respiratory Symptoms in COPD (E-RSTM:COPD) was developed to quantify respiratory symptoms in clinical trials. This study aimed to better understand how trials use this patient-reported outcome measure as an endpoint, as well as its responsiveness and performance relative to other outcome measures. OBJECTIVES: To summarize the use of the E-RS:COPD in pharmacological trials since its qualification by regulatory authorities. METHODS: A rapid systematic literature review, using key biomedical databases to identify English language full-text publications of randomized controlled clinical trials (RCTs) that included the E-RS:COPD as an endpoint (2010-2020). Two investigators independently screened the publications and extracted data. MEASUREMENTS AND MAIN RESULTS: Of 219 screened records, 28 full-text publications were included, and data from 17 reporting 20 unique double-blind RCTs were synthesized. The E-RS:COPD was positioned as a primary or secondary endpoint in six publications (35%), and served as an exploratory or additional endpoint in 11 (65%). Statistically significant E-RS:COPD treatment effects versus placebo/comparator were found in 13 of the 14 publications reporting symptom results. E-RS:COPD effects corresponded well with other outcome measures (e.g., St George's Respiratory Questionnaire [SGRQ] and forced expiratory volume 1 second [FEV1]). Two publications reported the number of responders. CONCLUSIONS: E-RS:COPD is sensitive to treatment effects in clinical trials testing drug therapies. Presentation of trial results should include responder analyses to facilitate interpretation and application of results.

Mobile Apps to Support Caregiver-Resident Communication in Long-Term Care: Systematic Search and Content Analysis.

BACKGROUND: In long-term residential care (LTRC), caregivers' attempts to provide person-centered care can be challenging when assisting residents living with a communication disorder (eg, aphasia) and/or a language-cultural barrier. Mobile communication technology, which includes smartphones and tablets and their software apps, offers an innovative solution for preventing and overcoming communication breakdowns during activities of daily living. There is a need to better understand the availability, relevance, and stability of commercially available communication apps (cApps) that could support person-centered care in the LTRC setting. OBJECTIVE: This study aimed to (1) systematically identify and evaluate commercially available cApps that could support person-centered communication (PCC) in LTRC and (2) examine the stability of cApps over 2 years. METHODS: We conducted systematic searches of the Canadian App Store (iPhone Operating System platform) in 2015 and 2017 using predefined search terms. cApps that met the study's inclusion criteria underwent content review and quality assessment. RESULTS: Although the 2015 searches identified 519 unique apps, only 27 cApps were eligible for evaluation. The 2015 review identified 2 augmentative and alternative cApps and 2 translation apps as most appropriate for LTRC. Despite a 205% increase (from 199 to 607) in the number of augmentative and alternative communication and translation apps assessed for eligibility in the 2017 review, the top recommended cApps showed suitability for LTRC and marketplace stability. CONCLUSIONS: The recommended existing cApps included some PCC features and demonstrated marketplace longevity. However, cApps that focus on the inclusion of more PCC features may be better suited for use in LTRC, which warrants future development. Furthermore, cApp content and quality would improve by including research evidence and experiential knowledge (eg, nurses and health care aides) to inform app development. cApps offer care staff a tool that could promote social participation and person-centered care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/10.2196/17136.

Oral care practices of long-term care home residents and caregivers: Secondary analysis of observational video recordings.

AIMS AND OBJECTIVES: To describe the proportion of toothbrushing task steps, long-term care residents had an opportunity to complete; the duration and quality of toothbrushing by both residents and caregivers; and the feedback caregivers provided. BACKGROUND: Poor oral health is widespread among older adults in long-term care homes; however, little is known about their actual oral health practices. DESIGN: Secondary analysis of video recordings. METHODS: A total of 58 video-recorded sessions were analysed from two long-term care homes in Canada. Eligible residents had at least one natural tooth, required oral care assistance, had Alzheimer's disease and understood English. Eligible caregivers spoke English and had worked for at least 1 year with people with dementia. Toothbrushing success was identified by the resident's participation in, and completion of, nine toothbrushing steps. Total time spent brushing teeth was calculated by summing the duration of time spent brushing teeth. Quality was described by time spent brushing the facial versus the lingual or occlusal surfaces. Caregiver verbal feedback was pulled from transcripts and analysed using content analysis. STROBE guidelines were used in reporting this study. RESULTS: The two step residents most frequently completed or attempted were brushing their teeth (77% complete, 7% attempt) and rinsing their mouth (86% complete, 2% attempt). The average time spent brushing teeth was 60.33 s (SD = 35.15). In 66% of observed videos, toothbrushing occurred only on the facial tooth surfaces, with no time spent brushing the lingual or occlusal surfaces. CONCLUSION: Caregivers are supporting residents to independently complete toothbrushing; however, the duration and quality of toothbrushing are not sufficient to ensure optimal oral health. RELEVANCE TO CLINICAL PRACTICE: Clear, detailed guidelines are required to ensure adequate oral care for long-term care residents. Staff need to be aware that all surfaces should be brushed to ensure proper oral health.

Care Staff Perspectives on Using Mobile Technology to Support Communication in Long-Term Care: Mixed Methods Study.

BACKGROUND: Long-term care (LTC) homes provide 24-hour care for people living with complex care needs. LTC staff assist older adults living with chronic conditions such as Alzheimer disease, related dementias, and stroke, which can cause communication disorders. In addition to the complex cognitive challenges that can impact communication, further difficulties can arise from cultural-language differences between care staff and residents. Breakdowns in caregiver-resident communication can negatively impact the delivery of person-centered care. Recent advances in mobile technology, specifically mobile devices (tablets and smartphones) and their software apps, offer innovative solutions for supporting everyday communication between care staff and residents. To date, little is known about the care staff's perspectives on the different ways that mobile technology could be used to support communication with residents. OBJECTIVE: This study aims to identify care staff's perspectives on the different ways of using devices and apps to support everyday communication with adults living in LTC homes and the priority care areas for using mobile technology to support communication with residents. METHODS: This descriptive study employed concept mapping methods to explore care staff's perspectives about ways of using mobile technology with residents and to identify the usefulness, practicality, and probable uses of mobile technology to support communication in priority care areas. Concept mapping is an integrated mixed methods approach (qualitative and quantitative) that uses a structured process to identify priority areas for planning and evaluation. In total, 13 care staff from a single LTC home participated in this study. Concept mapping includes 2 main data collection phases: (1) statement generations through brainstorming and (2) statement structuring through sorting and rating. Brainstorming took place in person in a group session, whereas sorting and rating occurred individually after the brainstorming session. Concept mapping data were analyzed using multidimensional scaling and cluster analysis to generate numerous interpretable data maps and displays. RESULTS: Participants generated 67 unique statements during the brainstorming session. Following the sorting and rating of the statements, a concept map analysis was performed. In total, 5 clusters were identified: (1) connect, (2) care management, (3) facilitate, (4) caregiving, and (5) overcoming barriers. Although all 5 clusters were rated as useful, with a mean score of 4.1 to 4.5 (Likert: 1-5), the care staff rated cluster 2 (care management) as highest on usefulness, practicality, and probable use of mobile technology to support communication in LTC. CONCLUSIONS: This study provided insight into the viewpoints of care staff regarding the different ways mobile technology could be used to support caregiver-resident communication in LTC. Our findings suggest that care management, facilitating communication, and overcoming barriers are 3 priority target areas for implementing mobile health interventions to promote person-centered care and resident-centered care.

Can We Help Care Providers Communicate More Effectively With Persons Having Dementia Living in Long-Term Care Homes?

BACKGROUND: Effective communication between residents with dementia and care providers in long-term care homes (LTCHs) is essential to resident-centered care. PURPOSE: To determine the effects of a communication intervention on residents' quality of life (QOL) and care, as well as care providers' perceived knowledge, mood, and burden. METHOD: The intervention included (1) individualized communication plans, (2) a dementia care workshop, and (3) a care provider support system. Pre- and postintervention scores were compared to evaluate the effects of the intervention. A total of 12 residents and 20 care providers in an LTCH participated in the feasibility study. RESULTS: The rate of care providers' adherence to the communication plans was 91%. Postintervention, residents experienced a significant increase in overall QOL. Care providers had significant improvement in mood and perceived reduced burden. CONCLUSION: The results suggest that the communication intervention demonstrates preliminary evidence of positive effects on residents' QOL and care providers' mood and burden.

Quantitative analysis of formal caregivers' use of communication strategies while assisting individuals with moderate and severe Alzheimer's disease during oral care.

UNLABELLED: This cross-sectional observational study examined formal caregivers' use of task-focused and social communication strategies while assisting individuals with moderate and severe Alzheimer's disease residing in a long-term care facility during a basic activity of daily living: toothbrushing. Thirteen formal caregiver-resident dyads were observed during a total of 78 separate toothbrushing sessions. All caregiver utterances occurring during the task were transcribed and coded for type of communication strategy utilizing a multidimensional observational coding scheme, which was developed a priori. Overall, the majority of residents, irrespective of disease severity, successfully completed toothbrushing with the support of caregiver assistance. Caregivers assisting residents with moderate and severe AD were found to use a variety of communication strategies, with task-focused strategies accounting for the majority of use. For the most part, the communicative strategies employed did not differ across disease severity. However, some differences were identified including the use of one proposition, paraphrased repetition, using the resident's name, and provision of full assistance, with these strategies being used more often when assisting individuals with severe AD. This study adds to the emerging literature supporting the use of specific communication strategies while assisting residents with AD during the completion of daily tasks. LEARNING OUTCOMES: From reviewing this study, readers will be able to identify a variety of communication strategies, both task-focused and relational, that formal caregivers utilize while assisting residents with moderate and severe Alzheimer's disease (AD) during a basic activity of daily living. Furthermore, the reader will be able to distinguish between communication strategies that are optimal when assisting individuals with moderate AD as compared to assisting individuals with severe AD.

Examining success of communication strategies used by formal caregivers assisting individuals with Alzheimer's disease during an activity of daily living.

PURPOSE: To examine how formal (i.e., employed) caregivers' use verbal and nonverbal communication strategies while assisting individuals with moderate to severe Alzheimer's disease (AD) during the successful completion of an activity of daily living (ADL). Based on the literature, the authors hypothesized that caregivers' use of 1 proposition, closed-ended questions, and repetition would be of most benefit. METHOD: Twelve caregiver-AD dyads participated in this observational study. Each dyad was videorecorded on 6 separate occasions while completing handwashing. Handwashing sessions were transcribed and systematically coded for the use of communication strategies during completion of the ADL. RESULTS: Caregiver-AD dyads successfully completed 90% of all handwashing sessions, and caregivers employed a variety of communication strategies. Consistent with our hypotheses, during successful task completion, caregivers most frequently provided individuals with AD with 1 direction or idea (i.e., proposition) at a time, closed-ended questions, and paraphrased repetition. Caregivers also frequently used encouraging comments and the resident's name during the task; however, use of these strategies was not correlated to task success rate. CONCLUSION: This study adds to the limited body of evidence supporting the use of specific communication strategies by caregivers assisting individuals with moderate to severe AD during successful completion of ADLs.