Comparative Analysis of Health- and Vision-Related Quality of Life Measures among Trinidadians with Low Vision and Normal Vision-A Cross-Sectional Matched Sample Study.

This cross-sectional study investigated the health-related and vision-related quality of life measures of adults with low vision compared to healthy individuals in Trinidad and Tobago. The health-related quality of life (HRQOL-14) and the National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25) were administered to 20 participants with low vision caused by diabetic retinopathy, retinitis pigmentosa, glaucoma, and macular degeneration, as well as 20 participants with no visual problems (control). Participants were recruited from the University Eye Clinic in Trinidad and Tobago. Compared to the controls, more participants in the low-vision group had lower age-adjusted NEI-VFQ-25 scores (48.3% vs. 95.1%; p < 0.001), had poor general (47.5% vs. 10%, p = 0.004) and mental (100% vs. 10%, p < 0.042) health, experienced greater activity limitation due to impairment or health problems (85% vs. 20%, p < 0.001), needed help with personal care (27.5% vs. 0%, p < 0.009) and daily routine (67.5% vs. 0%, p < 0.001), and experienced sleep problems (97.5% vs. 65%, p < 0.001) and symptoms of anxiety (100% vs. 90%, p = 0.042). All the diabetic retinopathy participants (100%, p = 0.028) had two or more impairments or vision problems compared to none in the other low-vision participants. In summary, the HRQOL-14 and NEI-VFQ-25 scores were significantly reduced in low-vision participants, who also demonstrated a greater vulnerability to poor quality of life in the presence of diabetes retinopathy. These findings have important clinical implications regarding offering appropriate support and interventions to improve quality of life outcomes in individuals with low vision.

Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: A focus on family-centred care, psychosocial wellbeing, and transitions.

To describe current rehabilitation models of care and programmes, in Australia and internationally, related to family-centred care, psychosocial support, and transitions used for children and youth who have sustained major traumatic brain and/or spinal cord injuries. Fourteen services were interviewed, including eight medical rehabilitation services, three community-based rehabilitation services, two insurance services, and one state-wide education service provider. Semi-structured interviews were transcribed and analysed using qualitative content analysis in NVivo. Compared to the number of services supporting children and youth with traumatic brain injury, a very limited number supported those with spinal cord injury. Although valued and often included in the model of care, family-centred care was rarely systematically evaluated by the services. Most services provided psychosocial and transition support to children and youth, and their families in the short-term post-injury, but not in the long-term. Several challenges also hindered the smooth delivery of these support services, including poor communication between service providers. These findings show that services aimed to provide the best possible care to these children and youth, and their families; guided by rehabilitation models of care. However, challenges persist with regards to delivering family-centred care, coordinating return to school, and providing long-term support for psychosocial problems and transition.

Sleep Disturbances in Young Adults with Childhood Traumatic Brain Injury: Relationship with Fatigue, Depression, and Quality of Life.

OBJECTIVE: This study assessed the consequences of childhood traumatic brain injury (TBI) on sleep, fatigue, depression, and quality of life (QoL) outcomes and explored the relationships between these variables at 20 years following childhood TBI. PARTICIPANTS: We followed up 54 young adults with mild, moderate, and severe TBI, and 13 typically developing control (TDC) participants, recruited at the time of TBI. METHODS: Sleep was assessed with the Pittsburgh Sleep Quality Index and actigraphy. RESULTS: At 20 years postinjury, results showed no significant difference between whole TBI group and TDC participants on subjective sleep quality; however, the moderate TBI group reported significantly poorer subjective sleep quality compared to those with severe TBI. Poorer subjective sleep was associated with increased symptoms of fatigue, depression, and poorer perceptions of General Health in the TBI group. Actigraphic sleep efficiency, fatigue, depression, and QoL outcomes were not significantly different between TBI and TDC or among TBI severity groups. CONCLUSIONS: These preliminary findings underscore associations between subjective sleep disturbance, fatigue, depression, and QoL in this TBI sample, and mostly comparable outcomes in sleep, fatigue, depression, and QoL between the TBI and TDC groups. Further research is required to clarify these findings.

Objective sleep outcomes 20 years after traumatic brain injury in childhood.

Purpose: To assess objective sleep outcomes and correlates in young adults with a history of childhood traumatic brain injury.Materials and methods: Participants included 45 young adults who sustained brain injury in childhood (mild = 12, moderate = 22, and severe = 11) and 13 typically developing control participants. Sleep was assessed with actigraphy and sleep diaries recorded over 14 consecutive days. Rates of good sleep (sleep efficiency ≥ 85%) and poor sleep (sleep efficiency < 85%) were also evaluated.Results: At 20-years postinjury, participants with traumatic brain injury and controls presented with similar outcomes across the objective sleep parameters (all p > 0.050) and rates of poor sleepers were also similar between these groups (p = 0.735): 67% and 77%, respectively. However, moderate and severe traumatic brain injury and female sex were associated with longer sleep duration.Conclusions: These findings provide preliminary insights into objective sleep outcome and associated factors in the very-long-term after childhood brain injuries. They also indicate the need to monitor sleep outcomes in young adults with and without traumatic brain injury.Implication for rehabilitationSustaining traumatic brain injury in childhood can impact on several functional domains including sleep.Sleep disturbances, particularly insomnia-related symptoms, are common in this population, with evidence of poor outcomes reported until adolescence postinjury, while outcomes beyond adolescence remain unexplored.In this first investigation of objective sleep outcomes in young adults with a history of childhood traumatic brain injury, we showed that insomnia-related symptoms are highly prevalent in both young adults with traumatic brain injury (67%) and healthy controls (77%).These findings suggest the need to routinely evaluate and treat sleep problem in young adults in general, irrespective of history of childhood traumatic brain injury.

Young adults' perspectives on health-related quality of life after paediatric traumatic brain injury: A prospective cohort study.

BACKGROUND: Quality of life (QoL) is commonly affected in children and families living with traumatic brain injury (TBI). Despite the established link between childhood TBI and reduced health-related QoL (HRQoL), there is a dearth of longitudinal, prospective research to determine the prevalence and predictors of impaired HRQoL in the very long term post-injury. OBJECTIVES: We evaluated HRQoL in young adult survivors of paediatric TBI at 15 years post-injury. We aimed to identify the prevalence of impaired HRQoL and the respective contribution of pre-injury, environmental, injury-related, cognitive and mood-based factors to various dimensions of HRQoL at 15 years post-injury. METHODS: This prospective study involved 52 young adult survivors of mild to severe TBI included from consecutive hospital admissions to the Royal Children's Hospital Melbourne, Australia between 1993 and 1997. Participants underwent neuropsychological evaluation and completed self-report measures of HRQoL, psychological functioning and social communication at 15 years post-injury. RESULTS: As compared with an age-matched Australian normative sample, the TBI group reported significantly poorer physical HRQoL at 15 years post-injury. Although group differences in other HRQoL domains did not reach statistical significance, 52% of the TBI group reported impaired functioning in at least one HRQoL domain. Contrary to expectations, HRQoL was not associated with injury severity, socioeconomic status, or pre-injury functioning. Instead, poorer HRQoL was linked to more severe depression symptoms, greater perceived social communication difficulty and reduced cognitive flexibility at 15 years post-injury. CONCLUSIONS: A substantial proportion of young adult survivors of childhood TBI experience poor HRQoL in at least one domain of functioning at 15 years post-injury. These findings suggest that, even in the very long term post-injury, the identification and treatment of modifiable risk factors has potential to improve very-long-term HRQoL outcomes in this vulnerable population.

A Systematic Review of Sleep-Wake Disturbances in Childhood Traumatic Brain Injury: Relationship with Fatigue, Depression, and Quality of Life.

OBJECTIVE: To systematically appraise the literature on the prevalence, types, and predictors of sleep-wake disturbances (SWD), and on the relationship between SWD, fatigue, depression, and quality of life in children and adolescents with traumatic brain injury (TBI). METHODS: MEDLINE, PubMed, PsychInfo, Web of Science, and EMBASE databases were searched, reference lists of retrieved articles were also searched for relevant articles, and study methods were evaluated for risk of bias. RESULTS: Of the 620 articles assessed, 16 met inclusion criteria. Sleep-wake disturbances were common in childhood TBI. The most common types of SWD reported were insomnia and excessive daytime sleepiness, with mild TBI participants showing a trend toward more sleep maintenance insomnia, while sleep-onset insomnia was typical in those with moderate-severe TBI. Predictors of SWD reported in studies involving mild TBI participants included TBI severity, male sex, preexisting SWD, high body weight, and depression; while injury severity and internalizing problems were associated with SWD in moderate-severe TBI participants. Sleep-wake disturbances were also associated with fatigue and poor quality of life following TBI. CONCLUSION: Sleep-wake disturbances are highly prevalent in childhood TBI, regardless of injury severity. Routine assessments of SWD in survivors of childhood TBI are recommended.

Outcomes of Subjective Sleep-Wake Disturbances Twenty Years after Traumatic Brain Injury in Childhood.

Sleep-wake disturbances (SWD) are frequent following traumatic brain injury (TBI) in childhood. However, outcomes of SWD following transition into young adulthood remain unknown. This study investigated prevalence and factors associated with subjective sleep quality, insomnia, and excessive daytime sleepiness in young adults with a history of childhood TBI. Participants included 54 young adults with mild (n = 14), moderate (n = 27), and severe (n = 13) TBI (age: mean = 27.7, SD = 3.3), and 13 typically developing controls (TDC) (age: mean = 25.9, SD = 2.2). SWD were assessed using the Pittsburgh Sleep Quality Index (PSQI), Insomnia Severity Index (ISI), and Epworth Sleepiness Scale (ESS). Compared with TDC, young adults with TBI reported a trend toward poorer sleep quality (F[1, 63] = 3.85, p = 0.054, η2 = 0.06), with a higher risk in participants after moderate TBI (mean = 2.40, SD = 0.56) than after severe TBI (mean = 1.89, SD = 0.62: p = 0.015). However, the groups did not differ on symptoms of insomnia and excessive daytime sleepiness, and SWD were less frequent after severe TBI at 20 years post-injury. Poor sleep quality in young adults with TBI was associated with high levels of anxiety and pain, and pain was also associated with higher risk of insomnia and excessive daytime sleepiness. Our findings indicate that sustaining TBI in childhood can increase risk of SWD in young adulthood, particularly following moderate TBI. Routine assessments and treatment of SWD, as well as anxiety and pain in children with TBI, should therefore continue into adulthood.