What quality of life domains are most important to older adults in residential care?

Quality of life is a critically important outcome measure in aged care. However, few studies have provided a detailed examination of what quality of life means to older adults living in residential care. In the current study, N = 43 older adults (67 to 99 years) living in six residential aged care facilities in four Australian states took part in semi-structured interviews. Participants had normal cognition through to mild /moderate cognitive impairment as measured by the PAS-Cog, were able to provide informed consent, and could participate in an interview conducted in English. Interviews were transcribed, and data was analyzed in NVivo using thematic analysis. Both physical and psycho-social aspects were identified as important for older adults' quality of life with six key quality of life domains identified: independence, mobility, pain management, social connections, emotional well-being, and activities. More research is needed to test these domains with a more diverse sample of older adults living in residential aged care, in particular older adults from culturally and linguistically diverse communities. Such qualitative work is essential for the development of suitable quality of life measures for this population and provides valuable information to inform improvements to care practices and service provision. Some ways in which the identified quality of life domains could be used to enhance care provision are discussed.

A neuro-cardiac self-regulation therapy to improve autonomic and neural function after SCI: a randomized controlled trial protocol.

BACKGROUND: Spinal cord injury (SCI) is associated with autonomic imbalance and significant secondary conditions, including cardiac and brain dysfunction that adversely impact health and wellbeing. This study will investigate the effectiveness (intention-to-treat) of a neuro-cardiac self-regulation therapy to improve autonomic and neural/brain activity in adults with SCI living in the community. METHODS: A two-arm parallel, randomised controlled trial in which adults with SCI living in the community post-rehabilitation will be randomly assigned to a treatment or control group. The treatment group (N = 60) aged 18-70 years with a chronic traumatic or non-traumatic SCI, will receive intervention sessions once per week for 10 weeks, designed to regulate autonomic activity using computer-based feedback of heart rate variability and controlled breathing (called HRV-F). Comprehensive neurophysiological and psychological assessment will occur at baseline, immediate post-treatment, and 6 and 12-months post-treatment. Primary outcome measures include electrocardiography/heart rate variability (to assess autonomic nervous system function) and transcranial doppler sonography (to assess cerebral blood circulation in basal cerebral arteries). Secondary outcomes measures include continuous blood pressure, electroencephalography, functional near-infrared spectroscopy, respiration/breath rate, electrooculography, cognitive capacity, psychological status, pain, fatigue, sleep and quality of life. Controls (N = 60) will receive usual community care, reading material and a brief telephone call once per week for 10 weeks and be similarly assessed over the same time period as the HRV-F group. Linear mixed model analysis with repeated measures will determine effectiveness of HRV-F and latent class mixture modelling used to determine trajectories for primary and selected secondary outcomes of interest. DISCUSSION: Treatments for improving autonomic function after SCI are limited. It is therefore important to establish whether a neuro-cardiac self-regulation therapy can result in improved autonomic functioning post-SCI, as well as whether HRV-F is associated with better outcomes for secondary conditions such as cardiovascular health, cognitive capacity and mental health. TRIAL REGISTRATION: The study has been prospectively registered with the Australian and New Zealand Clinical Trial Registry ( ACTRN12621000870853 .aspx). Date of Registration: 6th July 2021. Trial Sponsor: The University of Sydney, NSW 2006. Protocol version: 22/07/2021.

Developing dimensions for a new preference-based quality of life instrument for older people receiving aged care services in the community.

PURPOSE: To identify the salient quality of life characteristics relevant to older people in receipt of community aged care services in order to develop dimensions for a draft descriptive system for a new preference-based quality of life instrument. METHODS: Forty-one in-depth semi-structured interviews were undertaken with older people (65 years and over) receiving community aged care services across three Australian states to explore quality of life characteristics of importance to them. The data were analysed using framework analysis to extract broader themes which were organised into a conceptual framework. The data were then summarised into a thematic chart to develop a framework matrix which was used to interpret and synthesise the data. Care was taken throughout to retain the language that older people had adopted during the interviews to ensure that appropriate language was used when identifying and developing the quality of life dimensions. RESULTS: The analysis resulted in the identification of five salient quality of life dimensions: independence, social connections, emotional well-being, mobility, and activities. CONCLUSION: This research finds that quality of life for older people accessing aged care services goes beyond health-related quality of life and incorporates broader aspects that transcend health. The findings represent the first stage in a multiphase project working in partnership with older people to develop a new preference-based instrument of quality of life for informing quality assessment and economic evaluation in community aged care. In future work, draft items will be developed from these dimensions and tested in face validity interviews before progressing to further psychometric testing.

The integration of mixed methods data to develop the quality of life - aged care consumers (QOL-ACC) instrument.

BACKGROUND: This paper describes the collection and integration of mixed methods data to facilitate the final selection of items for the Quality of Life - Aged Care Consumers (QOL-ACC) instrument. The aim of the wider project is to develop a preference-based quality of life instrument that can be used for quality assessment and economic evaluation. Older people have been involved at every stage of the development of the QOL-ACC to ensure that the final instrument captures their perspectives and preferences. METHODS: Mixed methods data was collected on draft items for the QOL-ACC instrument across six key quality of life dimensions (mobility, pain management, emotional well-being, independence, social connections, and activities). Qualitative face validity data was collected from older people (aged 66 to 100 years) living in the community and in residential aged care via semi-structured interviews (n = 59). Quantitative data was collected from older people (aged 65 to 91 years) receiving aged care services in the community via an online survey (n = 313). A traffic light pictorial approach was adopted as a practical and systematic way to categorise and present data in a meaningful way that was easy for non-academic workshop members to understand and to be able to discuss the relative merits of each draft item. RESULTS: The traffic light approach supported the involvement of consumer and aged care provider representatives in the selection of the final items. Six items were selected for the QOL-ACC instrument with one item representing each of the six dimensions. CONCLUSIONS: This methodological approach has ensured that the final instrument is psychometrically robust as well as meaningful, relevant and acceptable to aged care consumers and providers.

An experiment to assess emotional and physiological arousal and personality correlates while imagining deceit.

In order to examine how personality traits, emotional arousal and physiological arousal affect deception confidence, students (N = 102) completed the Eysenck Personality Questionnaire-Revised (EPQ-R) as well as stress and deception tasks while their heart rate variability was measured. Findings indicated psychoticism did not moderate how physiologically aroused participants were while viewing emotionally salient stimuli (video of a road traffic accident) or the thought of enacting deceit, although this came close to significance. However, participants (particularly males) higher in psychoticism reported less subjective distress after imagining enacting deceit than those lower on psychoticism. Extroversion had no impact on physiological arousal when viewing emotionally salient stimuli or thinking about enacting deceit. However, extroverts reported more subjective distress after thinking about enacting deceit than introverts. Also, deception confidence was not correlated to any of these variables. Future research could examine a sample higher in psychoticism and how this trait impacts deception confidence.

Efficacy of Interventions to Improve Cognitive Function in Adults with Spinal Cord Injury: A Systematic Review.

Cognitive impairment is a common complication following spinal cord injury (SCI) and imposes a significant negative impact on adjustment, functional independence, physical and mental health, and quality of life. It is unclear whether interventions for cognitive impairment following SCI are effective. A systematic review of controlled trials was performed to evaluate the effect of interventions on cognitive functions in adults with SCI using search engines: Embase, The Cochrane Library, MEDLINE, Scopus, CINAHL, and Web of Science up to December 2023. Two reviewers independently screened the articles, and study findings were synthesized and summarized. The risk of bias was evaluated using the Cochrane Risk of Bias 2.0 tool. Eight moderate-quality studies were found that investigated the effects of physical exercise/activity-based therapy plus cognitive training or intermittent hypoxia, diet modification and dietary supplements, tibial nerve or cortical stimulation, and drug therapy on cognitive function in SCI. Physical exercise/activity-based therapy plus cognitive training showed most promise for improving cognitive functions, while drug therapy, diet modification, and dietary supplements showed potential for improving cognitive function. However, about half of the participants experienced heightened instability in blood pressure following the administration of midodrine, and one participant reported gastrointestinal side effects after taking omega-3 fatty acids. There was no evidence of improvement in cognitive function for stimulation techniques. The current review highlights the scarcity of research investigating the effectiveness of interventions that target cognitive function after SCI. Further, the effects of these eight studies are uncertain due to concerns about the quality of designs and small sample sizes utilized in the trials, as well as the employment of insensitive neurocognitive tests when applied to adults with SCI. This review highlights a significant gap in knowledge related to SCI cognitive rehabilitation.

Cognitive Failure in Adults with Spinal Cord Injury: A Valuable Adjunct Measure for Enhancing Cognitive Assessment and Rehabilitation Outcomes.

Cognitive impairment is common in persons with spinal cord injury (SCI), impacting their daily functioning and rehabilitation. This study assesses the extent of self-reported cognitive failures in everyday life in persons with SCI and its relationships with objective neurocognitive measures and psychosocial factors, including depressive mood, anxiety, perceived control, and fatigue. The differences between forty-one adults with a chronic SCI and forty-one able-bodied controls were examined. The participants completed the Cognitive Failures Questionnaire (CFQ) to assess cognitive failure and neurocognitive tests assessing attention and executive functions, as well as a psychosocial assessment. The SCI group reported higher cognitive failure rates than the able-bodied group (31.7% versus 19%, p > 0.05). Objective neurocognitive tests did not significantly correlate with the CFQ scores in either group. However, the CFQ scores were positively associated with most psychosocial factors, even after controlling for covariates. The CFQ scores were significantly associated with depressive mood in persons with SCI. These findings highlight the importance of incorporating self-reported cognitive measures into neurocognitive assessments and rehabilitation planning for adults with SCI. Self-reports capture everyday cognitive challenges that objective tests may miss. Additionally, this study highlights the strong connections between cognitive failures and psychosocial issues, particularly mood disorders, emphasizing the need for comprehensive rehabilitation and psychosocial support post-SCI, addressing both cognitive and emotional wellbeing.

Cognitive Reserve and Its Association with Cognitive and Mental Health Status following an Acute Spinal Cord Injury.

BACKGROUND: Mild cognitive impairment (MCI) is a common secondary condition associated with spinal cord injury (SCI). Cognitive reserve (CR) is believed to protect against cognitive decline and can be assessed by premorbid intelligence (pmIQ). Despite the potential utility of pmIQ as a complementary metric in the evaluation of MCI in SCI, this approach has been infrequently employed. The purpose of this study was to examine the association between MCI and pmIQ in adults with SCI with the aim of exploring the potential value of pmIQ as a marker of CR in this population. METHODS: Cognitive function was assessed on three occasions in adults with SCI over a 12-month period post-injury, and pmIQ was assessed once at baseline. Demographic and mental health measures were also collected, and logistic regression was conducted to determine the strength of association between pmIQ and MCI while adjusting for factors such as mental health and age. RESULTS: The regression analysis revealed that at the time of admission to SCI rehabilitation, the MCI assessed by a valid neurocognitive screen was strongly associated with pmIQ. That is, if a person has MCI, there was 5.4 greater odds (p < 0.01) that they will have poor pmIQ compared to a person without MCI after adjustment for age and mental health. CONCLUSIONS: The assessment of CR is an important area that should be considered to improve the process of diagnosing MCI in adults with an acute SCI and potentially facilitate earlier intervention to slow or prevent cognitive decline.

Heart Rate Variability Biofeedback in Adults with a Spinal Cord Injury: A Laboratory Framework and Case Series.

Heart rate variability biofeedback (HRV-F) is a neurocardiac self-regulation therapy that aims to regulate cardiac autonomic nervous system activity and improve cardiac balance. Despite benefits in various clinical populations, no study has reported the effects of HRV-F in adults with a spinal cord injury (SCI). This article provides an overview of a neuropsychophysiological laboratory framework and reports the impact of an HRV-F training program on two adults with chronic SCI (T1 AIS A and T3 AIS C) with different degrees of remaining cardiac autonomic function. The HRV-F intervention involved 10 weeks of face-to-face and telehealth sessions with daily HRV-F home practice. Physiological (HRV, blood pressure variability (BPV), baroreflex sensitivity (BRS)), and self-reported assessments (Fatigue Severity Scale, Generalised Anxiety Disorder Scale, Patient Health Questionnaire, Appraisal of Disability and Participation Scale, EuroQol Visual Analogue Scale) were conducted at baseline and 10 weeks. Participants also completed weekly diaries capturing mood, anxiety, pain, sleep quality, fatigue, and adverse events. Results showed some improvement in HRV, BPV, and BRS. Additionally, participants self-reported some improvements in mood, fatigue, pain, quality of life, and self-perception. A 10-week HRV-F intervention was feasible in two participants with chronic SCI, warranting further investigation into its autonomic and psychosocial effects.

Improving Assessment of Cognitive Impairment after Spinal Cord Injury: Methods to Reduce the Risk of Reporting False Positives.

Adults with spinal cord injury (SCI) are reported to have heightened risk of cognitive impairment, notably mild cognitive impairment (MCI). Reports of increased risk of MCI are almost exclusively based on cross-sectional assessments of cognitive function using norm-referenced scores. Norm-referenced single-point assessments do not reflect cognitive decline at the individual level but rather represent between group differences in cognitive function. The practice of relying solely on norm-referenced assessment to study MCI after SCI is therefore problematic as it lends to potential misclassification of MCI. Premorbid intelligence estimates permit comparison of people's actual versus expected cognitive function and thereby can be used to validate the presence of genuine cognitive decline. These are not utilized in the assessment of MCI after SCI. This study simulated data for 500,000 adults with SCI to compare norm-referenced and premorbid-intelligence methods of screening for MCI to examine the potential extent of MCI misclassification after SCI resulting from the overreliance on norm-referenced methods and exclusion of premorbid intelligence methods. One in five to one in 13 simulated adults with SCI were potentially misclassified as having MCI showing that measures of premorbid cognitive function must be included in assessment of cognitive function after SCI.

Cognitive Impairment in Individuals With Spinal Cord Injury: Findings of a Systematic Review With Robust Variance and Network Meta-analyses.

BACKGROUND AND OBJECTIVES: Estimates of the prevalence (10-60%) of cognitive impairment in individuals with spinal cord injury (SCI) are too broad and which domains of cognition are most affected is unclear. We performed a meta-analysis to investigate impairments across domains of cognitive functioning to provide a nuanced picture of research conducted to date into cognitive impairment following SCI. METHODS: Results of peer reviewed studies published in English between 1980 and 2021 comparing ≥20 participants with SCI to able-bodied controls were synthesized using meta-analysis. The primary outcomes were neurocognitive test scores categorized into five cognitive domains as listed in the Diagnostic and Statistical Manual of Mental Disorders: Complex Attention, Executive Functioning, Learning and Memory, Language, and Perceptual Motor Function. Two researchers independently assessed and verified extracted data to comply with meta-analytic reporting guidelines. Robust variance estimation (RVE) meta-analysis was conducted to determine an overall pooled effect size across all cognitive domains using data extracted from studies. Using network meta-analysis, we synthesised eligible studies and made comparisons with the five domains of cognitive functioning serving as the outcomes and SCI as the condition. RESULTS: Of 4,783 potential studies, 13 met final inclusion criteria. Studies met 6 of 8 quality assessment criteria generally. Results suggested that adults with SCI have reduced cognitive functioning (effect size:-0.84; 95%CI: -1.24, -0.44, p < .001) compared to able-bodied individuals, with deficits mostly in attention (g= -0.64; 95%CI: -0.92, -0.38) and executive functioning (g= -0.61, 95%CI: -0.89, -0.04). Publication bias and high heterogeneity (I2:86%) qualify these findings and highlight the need to improve research methods in this area. DISCUSSION: Adults with SCI appear more likely than adults who are able-bodied to display cognitive impairments mostly in areas of attention and executive functioning. Research practices must become consistent to reduce heterogeneity so that the validity and reliability of the results of future studies into cognitive impairment following SCI improves.