Population Norms Research Articles

Multidimensional and Longitudinal Impact of a Genetic Diagnosis for Critically Ill Infants

BACKGROUND AND OBJECTIVES: Many genetic conditions present in the NICU, where a diagnostic evaluation is pursued. However, understanding of the impact of a genetic diagnosis on clinical outcomes and health-related quality of life for these infants remains incomplete. We therefore evaluated parent-reported outcomes complemented by clinical outcomes measures over one year for a cohort of infants in the NICU undergoing genetic evaluation. METHODS: Prospective cohort study evaluating outcomes after genetics consultation in a level IV NICU via parent report and electronic medical record review. Eligible infants were genetically undiagnosed at enrollment. Parent surveys were administered at baseline and 3, 6, and 12 months following enrollment and assessed genetic testing utility as well as parent-reported infant health-related quality of life using the Infant Toddler Quality of Life Questionnaire. RESULTS: A total of 110 infant–parent pairs were enrolled. Infants had a median age at enrollment of 15 days (interquartile range 8–37.75). At baseline, 74% (81/110) of parents endorsed high importance of finding a genetic diagnosis, but perceived importance significantly decreased over time. Over the study period, 38 infants received a molecular diagnosis per parent report, although this was discordant with electronic medical record review. Identification of a diagnosis did not significantly impact health-related quality of life across most domains, which was lower overall than population norms. CONCLUSIONS: A genetic diagnosis is highly desired by parents in the NICU, though waning interest over time for undiagnosed families may reflect parental emotional adaptation and acceptance. Additional supports are needed to improve perceived quality of life.

Patient-reported outcome was close to the Danish background population 6 months after non-surgical treatment of Neer 2-part surgical neck fractures: a prospective cohort study in patients aged 60 or above.

Neer 2-part surgical neck fractures are the most common displaced proximal humerus fractures. We aimed to evaluate patient-reported outcome in a consecutive series of older people receiving nonoperative treatment. This is a single-center prospective cohort study. We included patients aged 60 or above referred to a Danish university hospital. The preregistered protocol followed the recommendations from randomized trials. Patients were followed at the outpatient clinic at 2, 6, and 24 weeks. After 24 weeks, they were evaluated with Oxford Shoulder Score (OSS, 0-48, 48 best) and EuroQoL 5 dimensions, 3 levels (EQ-5D-3L, -0.624 to 1, 1 best). Clinical failure was defined as conversion to surgery or OSS ≤ 24. Population norms were reported to interpret the cohort data, but no formal statistical comparisons between historical cohorts were planned. We used descriptive statistics to report rates and proportions. For 36 months, 268 patients (mean age 76, 79% female) with Neer 2-part surgical neck fractures received non-surgical treatment. After excluding patients with concomitant fractures, dementia, or death, complete follow-up was available for 167 patients. 8 patients (3.0%) had surgery. The mean OSS was 37.2 (SD 8.1), which equals 78% of maximum shoulder function. The norm for the population of the same age and gender was 82%. The mean EQ-5D-3L score was 0.79 (SD 0.16), while the norm for the same-age population was 0.82. 16 (10%) had an OSS score of 24 or below. Non-surgical treatment in older people with Neer 2-part surgical neck fractures resulted after 6 months in patient-reported shoulder function and quality of life close to that of the Danish background population.

Norms for the EQ-5D-5L among the general adult population in Alberta, Canada.

To present EQ-5D-5L population norms for the general adult population in Alberta, Canada. We analyzed data from 11 population-based surveys conducted in Alberta between 2012 and 2021. By applying appropriate sampling weights, we estimated normative data for the EQ-5D-5L dimensions, index scores, and visual analogue scale (VAS) scores. This analysis was conducted for the overall population as well as for subgroups categorized by age, sex, provincial health zones, and 17 chronic conditions. The analysis included data from 60,447 respondents (ages 18-99; 51.4% female) across various survey waves, revealing minimal variations in sample characteristics and EQ-5D-5L scores over time. The most frequently reported problems were pain/discomfort (62.2%) and anxiety/depression (41.7%), while 22.5% of respondents reported no issues on any dimension. The mean (SD) EQ-5D-5L index score was 0.845 (0.137), and the mean EQ VAS score was 77.4 (16.7). There was a notable increase in the proportion of reported problems across all dimensions with age, except for anxiety/depression, which showed a decline with advancing age. Females reported slightly more problems across all dimensions compared to males. Individuals with chronic pain had the lowest EQ-5D-5L index scores, followed by those with anxiety and depression, while the lowest EQ VAS scores were observed in individuals with congestive heart failure, kidney disease, and chronic obstructive pulmonary disease. This study provides EQ-5D-5L norms for the adult population in Alberta. These reference values can be used to benchmark patients' outcomes as well as to establish burden of illness in this population and facilitate the interpretation of EQ-5D-5L scores in various applications.

The Cancer-Specific Health Economic Measure QLU-C10D is Valid and Responsive for Assessing Health Utility in Patients with Thyroid Cancer.

Background: Health economic appraisals often rely on the assessment of health utilities using preference-based measures (PBM). The cancer-specific PBM, European Organisation for Research and Treatment of Cancer Quality of Life Utility - Core 10 Dimensions (EORTC QLU-C10D), was developed recently, and now needs to be validated in various clinical populations. Methods: In a multicenter, multinational prospective cohort study, we longitudinally collected EORTC QLQ-C30 and EQ-5D-5L data from patients with thyroid cancer. We applied seven country-specific value sets to the QLQ-C30 data to derive country-specific utility values and used the EQ-5D-5L as a comparator PBM. Criterion validity was assessed by correlating index scores and Bland-Altman plots. Construct validity was investigated by correlating domain scores. Known-group comparisons and responsiveness were assessed using external clinical criteria. Results: A total of 181 patients with thyroid cancer from nine countries (three continents) provided analyzable data. Patients were included if they had differentiated, medullary, or anaplastic thyroid cancer. Mean utility values of both instruments were generally lower compared to general population norms. No floor or ceiling effects were present for the QLU-C10D. The intra-class correlation for EQ-5D-5L and QLU-C10D index values ranged from 0.761 to 0.901 across the measurement timepoints, supporting criterion validity. Spearman's correlation coefficients ranged from 0.289 to 0.716 for theoretically corresponding domain pairs. The QLU-C10D detected differences in 9 of 15 known-group comparisons, supporting sensitivity. Clinically important changes were detected by all QLU-C10D country specific value sets, supporting responsiveness. Further, the QLU-C10D had higher statistical efficiency than the EQ-5D-5L in 74.7% of comparisons. Conclusions: The QLU-C10D is a valid PBM for health economic evaluations in thyroid cancer studies. We recommend its use to estimate health utilities in economic evaluations of thyroid cancer therapies.

When does annual geriatric hip fracture mortality revert to baseline?

BackgroundGeriatric hip fracture patients exhibit high mortality post-injury. It's unclear if and when mortality reverts to baseline. We therefore ask, When, if ever, does the mortality rate of geriatric hip fracture revert to the population-wide baseline rate? How does the mortality rate after geriatric hip fracture compare to the population norms? Understanding this timeline is crucial for assessing disease burden and guiding treatment plans.MethodsA cohort of 17,868 male patients aged 65–89 years treated for hip fracture within the VA healthcare system was studied. Patients were grouped by age at the time of fracture, and age-specific fractional survival was assessed annually for 10 years. For a comparison control group, a virtual cohort of 17,868 individuals, mirroring the age distribution of the patient group, was created and reduced over 10 cycles according to Social Security Administration expected mortality statistics.ResultsThe year-one mortality rate among fracture patients was 35.4%, compared to 6.3% in age-matched controls. By year ten, only 8.5% of the fracture patients remained alive, vs. 39.8% in the general population. The annual risk of dying for patients who survived past the first year was consistently in the range 19%–21% for all subsequent years.ConclusionHip fracture patients who survive the initial injury are still subject to annual mortality risk of approximately 20%, an elevation above population norms persisting for at least a decade. The data underscores the severity of geriatric hip fractures, and suggest that focusing one- or two-year survival rates may not fully capture the severity of the injury.

How Much Does Prosthetic Joint Infection and Its Successful Treatment Affect Patient-reported Quality of Life?

Uncomplicated joint replacement improves pain and other patient-reported outcome measures (PROMs) such as joint function scores and quality-of-life measures. However, the overall impact of periprosthetic joint infection (PJI) and its successful treatment on PROMs is poorly defined. In this study, we describe quality-of-life scores using the 12-item Short Form survey, version 2 (SF-12v2), collected as part of a large, prospective, observational study of PJI. (1) Do patients with newly diagnosed PJI have lower quality-of-life scores than the general age-matched population? (2) Are lower quality-of-life scores for patients with PJI sustained for ≥ 12 months? (3) What factors are associated with a good functional outcome at 12 months, defined by achieving a physical component summary (PCS) score of > 50 on the SF-12v2 (that is, above the age-adjusted population mean) or an increase of > 8.9 or more from baseline? The PIANO (Prosthetic joint Infection in Australia and New Zealand, Observational study) cohort was a prospective, longitudinal, multicenter cohort study of 783 patients with newly diagnosed PJI recruited across 27 centers between July 2014 and December 2017. All participants were followed for 2 years. SF-12v2 scores were collected at diagnosis (baseline) and 3, 12, and 24 months after diagnosis. Treatment success was defined as being alive with no clinical or microbiological evidence of infection and no ongoing use of antibiotics for the index joint. After exclusion of 6.6% (52) who had died, 4.2% (33) with PJI of joints other than hips and knees, and those with incomplete data sets (200 [25.5%]), 498 patients had complete SF-12v2 data sets available. At baseline, the median (IQR) PCS score was 37 (30 to 46), which increased to 41 (34 to 49; p < 0.001) at 12 months. Both measures were lower than those for the general age-matched population norm. There was no further improvement in PCS scores between 12 and 24 months. By contrast, the median (IQR) mental component summary score of the SF-12v2 was similar to age-adjusted population norms (48 [37 to 57]) at baseline. Only 40% of patients with PJI achieved a good functional outcome at 12 months. After adjustment for other factors, treatment success of PJI increased the odds of a good functional outcome by 67% (95% CI 11% to 154%; p = 0.02). PJIs have a large effect on the PCS score of the SF-12v2 quality-of-life measure at baseline, which is sustained for at least 2 years. Successful treatment of PJI increases the likelihood of a good functional outcome. These data can be used to set expectations for patients presenting with PJI and can be used to inform future clinical studies in which quality-of-life measures are incorporated into clinical endpoints. Level II, therapeutic study.

Refractive and ocular motor status in autistic adults without learning disabilities: an exploratory study

ABSTRACT Clinical relevance Refractive and ocular motor anomalies may be more prevalent among autistic adults without learning disabilities, compared to a non-autistic clinical population. In line with current guidance, optometrists should exclude these anomalies prior to prescribing tinted lenses. Background Autistic adults report various visual experiences with largely negative consequences on daily living. Some of these overlap with symptoms of refractive and ocular motor anomalies. Therefore, this study investigated refractive and ocular motor status, and pattern glare, in autistic adults without learning disabilities. The impact of appropriate treatment on visual experiences was explored. Methods Twenty four autistic adults, aged 19–67 years, underwent an eye examination involving refraction, ocular motor and pattern glare assessments. Based on pre-determined criteria, anomalies were treated with spectacles, orthoptic exercises, or tinted lenses. Participants completed three questionnaires (Glasgow Sensory Questionnaire, Visual Function Index and Convergence Insufficiency Symptoms Survey) at the start and end of the study to assess the impact of treatment. Results Relative to population norms, a notable proportion of participants had: a significant change in refractive correction (83.3%); accommodative infacility (72.7%); convergence insufficiency (37.5%); uncompensated distance dissociated heterophoria (33.3%); significant accommodative inaccuracy (27.2%); and positive pattern glare (25%). All participants required treatment. 16.7% were given orthoptic exercises only. New spectacles were dispensed to 79.2%, followed by 16.7% requiring orthoptic exercises and 4.2% dispensed tinted lenses. Questionnaire scores did not significantly change post-treatment. Conclusion This exploratory study suggests autistic adults may be more likely to present with refractive, ocular motor and pattern glare issues. Impacts on autistic visual sensory experiences, vision-related quality of life and visual function remain unclear. Pattern Glare Test scores of autistic adults appear to be reduced by appropriate refractive and/or ocular motor management. Therefore, optometrists should take a conservative approach, managing refraction and ocular motor status of autistic patients prior to considering tinted lenses.

Patient-reported outcomes, and perceptions and knowledge about recurrence in women with hormone receptor-positive breast cancer.

Over half of hormone receptor-positive (HR+) breast cancer recurrences occur >5years from diagnosis, however, little is known about well-being or breast cancer risk perceptions and knowledge in long-term HR+ breast cancer survivors. From 1/2021 to 1/2022, we surveyed patients with a history of stage II/III, HR+ breast cancer, ≥5years from diagnosis, without recurrence about concerns and perceptions related to their diagnosis and recurrence risk, physical and emotional health, knowledge, and risk reduction. Logistic regression identified factors associated with overestimation of 5-10year distant recurrence risk. Among 166 women, median age at diagnosis was 51, 2.4% were Black and 1.2% Hispanic; 19.3% did not have a college degree. Median time from diagnosis was 10years (range: 5-23). Median PROMIS anxiety (53; range: 37-73), physical (51, range: 32-68), and mental (51, range: 25-68) scores were similar to population norms (score of 50). 40% of women estimated metastatic recurrence risk to be ≥20% 5-10years post-treatment; patients without a college degree were more likely to overestimate this risk (multivariable prevalence odds ratio: 3.69, 95% confidence interval: 1.49, 9.18). Only 17% correctly indicated HR+ breast cancer as having a higher risk of recurrence after 5years; over one-third inaccurately responded that alcohol in moderation decreases recurrence risk. While physical and emotional health were comparable to the general population, many survivors harbored inaccurate risk perceptions and knowledge. The association between lower educational attainment and risk overestimation underscores the importance of attention to literacy and numeracy when developing interventions to improve risk communication.

Stress and Quality of Life of Parents of Children With POLR3-Related Leukodystrophy: A Cross-Sectional Pilot Study.

Background: RNA polymerase III (POLR3)-related leukodystrophy is a rare, neurodegenerative disorder characterized by hypomyelination, hypodontia, and hypogonadotropic hypogonadism. Despite the challenges of caring for a child with POLR3-related leukodystrophy, few studies have examined parents' disease burden. We sought to investigate quality of life and stress levels amongst parents of children with POLR3-related leukodystrophy. Methods: 43 parents of 32 children completed questionnaires on demographics, stress, quality of life, coping mechanisms, and experience of injustice. Detailed clinical data was collected from all patients. Results: Mothers (t[27] = -8.66, P < .001) and fathers (t[16] = -4.47, P < .001) had lower quality of life scores compared to the normative population, yet 80% of parents' stress scores fell within the normal stress range. Parents' experience of injustice scores were high (>60). Correlations were found between and within parents' scores. Years since disease onset and certain life circumstances correlated to mothers' quality of life scores; however, no correlation was found between modifiable factors and fathers' quality of life scores. Helpful coping mechanisms included those that allowed parents to be involved in their child's life. Conclusions: This is the first study to assess stress and quality of life in this population. These results shed light on the importance of implementing services and social support to improve the well-being of parents.

Hepatitis C Infection Is Not a Cardiovascular Risk Factor in Young Adults.

Background: Cardiovascular diseases are one of the leading causes of hospitalization and death in Poland and around the world and are still an ongoing problem for modern medicine. Despite advances in diagnosis and treatment, both conservative and invasive, the prevention of cardiovascular disease directed at reducing risk factors remains a problem. The main classical risk factors for the development of cardiovascular disease in Poland include hypertension, lipid disorders, obesity, diabetes and smoking. A new non-classical risk factor is HCV infection. Most of the studies on the impact of HCV infection on cardiovascular disease involve elderly populations with long-term infections and advanced liver fibrosis. Methods: Hence, we set out to analyze the prevalence of risk factors and cardiovascular disease in a population of young adults under 45 years of age infected with HCV, according to gender, HCV genotype and the duration of infection. The study group consisted of 217 patients of both sexes aged 21 to 45 years (mean age 36 years). Results: No cardiovascular disease was found among the young adults infected with HCV in the study group. The most common risk factor was cigarette smoking, which affected 20.7% of the subjects, followed by hypertension (12%) and diabetes mellitus (5.5%); the prevalence was lower than in the general population. Most of the patients were characterized as overweight, with a mean BMI of 26.39 kg/m2. The mean values of other metabolic parameters-total cholesterol, LDL, HDL, uric acid and glucose-were within the population norm. The mean value of CRP was 1.43, which may indicate a moderate cardiovascular risk. Conclusions: Based on the conducted research, it was found that HCV infection in young individuals was not a risk factor for cardiovascular diseases, and the prevalence of risk factors was similar to that in the general population. The effect of HCV on the increase in C-reactive protein requires further study. The early detection of HCV infection and treatment can be considered as a prevention of cardiovascular disease.

Impact of Bell's palsy in facial emotion recognition: a prospective observational study of 60 patients.

Patients with Bell's palsy suffer from functional deficits and cannot convey their emotions through the face as well as they used to. According to embodied cognition, automatic mimicry and facial feedback modulate emotion perception. The aim of our study was to determine the impact of Bell's palsy on facial emotion perception. Facial motor skills, the use of botulinum toxin injections, and anxiety were studied. 60 patients completed Emotest-VA, an assessment tool of facial emotion perception, facial motor assessment and affective questionnaires. Facial perception scores of patients were compared to the normative data provided by Emotest-VA. Relationships between facial motor skills, anxiety and perceptual abilities were carried out with Pearson's correlations. Perception accuracy scores were abnormal in 12% of patients. Patients were more ambiguous than normative population to perceive emotion (t(23) = 4.14, p < .001). Happiness arousal was negatively correlated to smile asymmetry (n = 60, r=-.294 p = .022). Patients who received botulinum toxin were more accurate to perceive disgust (Z = 3.60, p < .001). State anxiety decreased when patients could improve their horizontal smile (r = - 440, p < .001). Bell's palsy impaired sensorimotor simulation, thereby reducing emotional contagion. Smile measures could indicate patients' recovery and patients' anxiety. It could also predict patient's perceptual abilities. These results provide new directions in the management of Bell's palsy. Additionally to physical therapy, it is relevant to improve emotional contagion both in its productive and perceptive aspects through facial feedback.

Finnish children born very preterm have good reading comprehension but weak reading fluency at age 11 years – a longitudinal cohort study

ABSTRACT Children born very preterm (<32 gestational weeks and/or birth weight ≤1500 g) are at elevated risk for reading difficulties. This study aimed to investigate reading fluency and reading comprehension at 11 and to analyze the associations between literacy skills at 7 and reading skills at 11 in 134 Finnish-speaking very preterm children. At 11, reading fluency and reading comprehension were evaluated. At 7, pre-reading skills, decoding, and writing were assessed. Results showed that there were more preterm children with weak skills in reading fluency compared to a normative test population. Reading comprehension was age appropriate. Additionally, 62% to 68% of the children with weak literacy skills at 7 had weak reading fluency at 11, compared to those with more advanced skills (43% to 33%, p < 0.001 to 0.026). Respectively, 30% to 50% of the children with weak literacy at 7 had weak reading comprehension at 11 compared to those with more advanced skills (13% to 17%, p < 0.001 to 0.005). Findings highlight the importance of screening reading fluency until 11 years and providing support for the continuum between literacy skills in the beginning of schooling and reading outcome at later school age.

Impact of sarcopenia and muscle strength on postoperative complication risk following pancreatic resection

Background and aimsThe association between sarcopenia and postoperative complications has been widely reported in patients with cancer. Yet, the lack of standardized population-specific diagnostic cut-off points and assessments of muscle strength is hampering prospective clinical utilization. Therefore, we aimed to examine the impact of sarcopenia, defined by both regional and international cut-off points, along with various methods of measuring skeletal muscle and muscle strength, on the risk of postoperative complications following pancreatic resection. MethodsThe present prospective observational study enrolled patients scheduled for pancreatic resection. Body composition was assessed by DXA and CT prior to surgery. We applied the algorithm and cut-off points suggested by the European Working Group on Sarcopenia in Older People (EWGSOP) as well as cut-off points from a Danish normative reference population to classify patients as sarcopenic. Physical performance was assessed by usual gait speed while muscle strength was assessed by handgrip strength, leg extensor power, and 30-second sit-to-stand. Postoperative complications within 30 days following surgery were classified according to the Clavien-Dindo classification and the American College of Surgeons National Surgical Quality Improvement Program. Complications graded ≥3 according to Clavien-Dindo were considered major complications. ResultsA total of 134 patients with a mean age of 67 years (SD: 9) were enrolled of whom most underwent pancreaticoduodenectomy (64%). Using international cut-off points, eight patients (7%) were classified as sarcopenic using CT scans and sarcopenia was associated with an increased risk of major postoperative complications (RR 2.14 [1.33-3.43]). Using DXA, four patients (3%) were classified as sarcopenic, all of whom experienced a major complication. With regional cut-off points, 16 patients (13%) were classified as sarcopenic using CT scans, but sarcopenia was not associated with major complications (RR 1.39 [0.80-2.42]). Nine patients (7%) were classified as sarcopenic using DXA, but sarcopenia was not associated with major complications (RR 1.15 [0.54-2.48]). Across the different muscle strength assessment methods, handgrip strength consistently demonstrated a stronger association with postoperative complications. ConclusionSarcopenia defined according to the EWGSOP criteria and with international cut-off points is associated with an increased risk of postoperative complications following pancreatic resection. Using regionally based cut-off points, the prevalence of sarcopenia is higher, but it does not confer a higher postoperative complication risk. The use of different muscle strength assessment methods results in vastly different estimates of prevalence of low strength and associations with postoperative outcomes.

Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.

When the field of cancer survivorship research was in its infancy, the PROFILES registry was set up in 2004 to monitor patient-reported outcomes (PROs) in survivors and a normative population. This scoping review aims to summarize lessons learned from developing a population-based PRO registry, focusing on study methodologies, data collection shifts, data utilization, multidisciplinary collaboration, societal impact, and data sharing. A systematic computerized literature search through PubMed was performed to collect all publications using data from the PROFILES registry between January 1, 2004, and December 31, 2023. The PROFILES registry's research today encompassed 249 papers from 35 studies. Key insights include the importance of multi-hospital collaboration, which enhances participant inclusion and result generalizability. Optimizing response rates and patient inclusion is achieved through proactive data collection methods such as inclusion by health care professionals, and using both web-based and paper questionnaires. Longitudinal studies, despite their intensive data collection efforts, provide critical insights into the consequences of cancer and its treatment on patient-reported outcomes (PROs) from diagnosis through survivorship. Combining PRO data with comprehensive clinical registry data ensures reliable datasets, crucial for drawing meaningful conclusions. The shift towards multidisciplinary collaboration, open-access publishing, and data sharing all contribute to accessible and impactful research. This review highlights key insights from the PROFILES registry, emphasizing multi-hospital collaboration, proactive data collection, and the integration of PROs with clinical data. These lessons can guide future research on cancer survivorship, improving methodologies to enhance survivorship care and quality of life through multidisciplinary collaboration and data sharing.

Immune response and cognitive impairment in Post-COVID Syndrome: A systematic review

BackgroundAltered immune response and cognitive difficulties have been demonstrated in studies of post-COVID syndrome, including differences in immune status and cognitive functioning in the months following infection. This review aimed to examine immune status and cognitive differences in post-COVID Syndrome twelve or more weeks after COVID-19 infection. A further aim of this review was to explore a link between immune response and the cognitive deficits observed in this group. MethodsA systematic review was carried out of PubMed, PsychInfo, EMBASE and Web of Science electronic databases of observational studies 12+ weeks after COVID-19 infection, with assessment of immune status and cognitive function in post-COVID Syndrome samples. This review protocol was recorded on PROSPERO with registration number CRD42022366920. ResultsFollowing eligibility screening, eleven studies met inclusion criteria and were selected for our review. Six of eight studies which examined between group differences in specific domains suggested impaired cognition in the Post COVID Syndrome population, with the domains of executive function particularly affected. Of the eleven studies with immune data, nine studies reported increased markers of inflammation in the Post COVID Syndrome group, when compared to an age and gender matched “healthy control” sample, or population norms. Finally, when immune function and cognition are examined together, six studies presented results indicating a significant association between elevated immune response and cognitive function. ConclusionThis review highlights the frequency of cognitive difficulties months after COVID-19 infection and explores heighted immune response as a predictor of this change. Six studies suggest that immune status is a predictor of cognitive function, examining a marker of immune function and objective cognitive performance at 12 or more weeks following infection. Future studies of cognitive function in Post COVID Syndrome are needed to explore this relationship, and underlying mechanisms leading to changes in cognitive performance.

Frailty and health-related life quality in long-term follow up of intensive care patients above 65 years old: Protocol for a Norwegian prospective, observational multicenter study.

Frailty is strongly correlated with mortality in intensive care unit patients, yet routine screening among intensive care patients is rarely performed. The aim of this study is to assess frailty and health-related quality of life (HRQoL) in patients before intensive care admission and to compare this with outcomes after 3 and 12-months. The Clinical Frailty Scale and EQ-5D-5L will be used to assess frailty and HRQoL, respectively. This is an ongoing, prospective observational study including patients from five Norwegian ICU's. Inclusion criteria are patients aged ≥65 years requiring invasive mechanical ventilation for ≥24 h. The Clinical Frailty Scale and EQ-5D-5L are administered at baseline (before critical illness) and at 3- and 12-months post-inclusion. Additional data collected includes patient characteristics, ICU treatment details, illness severity and mortality. The EQ-5D-5L will be compared to Norwegian population norms and assessed for measurement properties. Inclusion started July 2022 and will be stopped at 350 patients. The study will be completed in 2025. The study will assess the feasibility and measurement properties of the Clinical Frailty Scale and EQ-5D-5L in ICU survivors by telephone at long-term follow-up study and will give additional information on the frailty and HRQoL of intensive care survivors. The study is registered in ClinicalTrials.gov NCT06012942. Protocol version 2.7.1, 19.05.2023.

Health Status of People Who Are and Are Not Experiencing Homelessness: Opportunities for Improvement.

This study assessed the physical and psychological health parameters of adults experiencing homelessness to inform the development and delivery of health services by comparing with a housed population in the same South Australian city. Adults experiencing homelessness, known to existing support services, were invited to participate in a comprehensive assessment of their physical and mental health using questionnaires and objective assessments. Descriptive analyses using the percentage of participants failing to attain recommended published thresholds and accumulated health deficits for 16 health assessments were compared for the young group of people experiencing homelessness (18-40 years), the middle aged and older people experiencing homelessness (40-75 years), and a housed population of the middle aged and older people (40-75 years). Those experiencing homelessness had multiple and potentially inter-related health deficits compared with a population of people not experiencing homelessness in the same city. They were significantly less likely to meet healthy population norms for clinical frailty (p < 0.001), psychological distress (p < 0.001), grip strength (p < 0.001), lung function (p < 0.001), sleep quality (p < 0.001), and pelvic floor bother (p = 0.002). Significantly more accumulated health deficits were found for people experiencing homelessness when compared with the same ages for those who were not (mean 6.5 (SD 2.4) compared with 5.0 (SD 2.1)). This considerably increased for people experiencing homelessness aged less than 40 years (mean 8.7 (1.7)). Priorities for health service provision for people of different ages experiencing homelessness, when compared with housed community dwellers, have been described. The provision of targeted health assessments and service provision that specifically address healthcare needs among people experiencing homelessness are likely to have the biggest impacts across multiple health domains.

Mechanisms of lumbar spine "flattening" in adult spinal deformity: defining changes in shape that occur relative to a normative population.

Previous work comparing ASD to a normative population demonstrated that a large proportion of lumbar lordosis is lost proximally (L1-L4). The current study expands on these findings by collectively investigating regional angles and spinal contours. 119 asymptomatic volunteers with full-body free-standing radiographs were used to identify age-and-PI models of each Vertebra Pelvic Angle (VPA) from L5 to T10. These formulas were then applied to a cohort of primary surgical ASD patients without coronal malalignment. Loss of lumbar lordosis (LL) was defined as the offset between age-and-PI normative value and pre-operative alignment. Spine shapes defined by VPAs were compared and analyzed using paired t-tests. 362 ASD patients were identified (age = 64.4 ± 13, 57.1% females). Compared to their age-and-PI normative values, patients demonstrated a significant loss in LL of 17 ± 19° in the following distribution: 14.1% had "No loss" (mean = 0.1 ± 2.3), 22.9% with 10°-loss (mean = 9.9 ± 2.9), 22.1% with 20°-loss (mean = 20.0 ± 2.8), and 29.3% with 30°-loss (mean = 33.8 ± 6.0). "No loss" patients' spine was slightly posterior to the normative shape from L4 to T10 (VPA difference of 2°), while superimposed on the normative one from S1 to L2 and became anterior at L1 in the "10°-loss" group. As LL loss increased, ASD and normative shapes offset extended caudally to L3 for the "20°-loss" group and L4 for the "30°-loss" group. As LL loss increases, the difference between ASD and normative shapes first occurs proximally and then progresses incrementally caudally. Understanding spinal contour and LL loss location may be key to achieving sustainable correction by identifying optimal and personalized postoperative shapes.

Primary and secondary trauma in adoptive parents.

Secondary trauma is recognised as one of the negative effects for professionals working with people that have experienced trauma. Research has demonstrated secondary trauma in foster carers but little research has explored trauma symptoms within adoptive parents, facing the emotional impact of parenting a child with adverse early experiences. This study aimed to document the rates of primary and secondary trauma symptoms in adoptive parents. It further explores the association between the extent of current behavioural and emotional challenges and the extent of the child's pre-adoption adverse experiences in predicting parental trauma responses. 190 adoptive parents completed an online survey including self-report measures of primary and secondary trauma. Almost one fifth of adoptive parents exhibited primary trauma scores of clinical concern; with 10% reaching the threshold for a probable diagnosis of PTSD. Participants also reported significantly higher levels of secondary trauma and burnout, and significantly lower levels of compassion satisfaction than population norms. The current behavioural and emotional challenges, including child-to-parent violence, predicted higher trauma scores more so than the extent of their child's past adverse experiences. The findings have clinical implications for identifying trauma symptoms within adoptive parents and wider implications for how we understand secondary and primary trauma. They further highlight the importance of firstly addressing current child behaviour, including child-to-parent violence when treating trauma symptoms. Limitations of this study and recommendations for further research are discussed.

Regional patterns of human cortex development correlate with underlying neurobiology

Human brain morphology undergoes complex changes over the lifespan. Despite recent progress in tracking brain development via normative models, current knowledge of underlying biological mechanisms is highly limited. We demonstrate that human cortical thickness development and aging trajectories unfold along patterns of molecular and cellular brain organization, traceable from population-level to individual developmental trajectories. During childhood and adolescence, cortex-wide spatial distributions of dopaminergic receptors, inhibitory neurons, glial cell populations, and brain-metabolic features explain up to 50% of the variance associated with a lifespan model of regional cortical thickness trajectories. In contrast, modeled cortical thickness change patterns during adulthood are best explained by cholinergic and glutamatergic neurotransmitter receptor and transporter distributions. These relationships are supported by developmental gene expression trajectories and translate to individual longitudinal data from over 8000 adolescents, explaining up to 59% of developmental change at cohort- and 18% at single-subject level. Integrating neurobiological brain atlases with normative modeling and population neuroimaging provides a biologically meaningful path to understand brain development and aging in living humans.