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PURPOSE: Most assessment tools used to diagnose and characterize autism spectrum disorder (ASD) were developed for in-person administration. The coronavirus disease 2019 (COVID-19) pandemic resulted in the need to adapt traditional assessment tools for online administration with only minimal evidence to support validity of such practices. METHODS: The current exploratory study compared scores from online administration of the Kaufman Brief Intelligence Test, Second Edition (KBIT-2) during the pandemic to scores derived from follow-up testing using traditional in-person administration. Participants were 47 children and adolescents (M age = 9.48 years, SD = 4.06; 68.10% male) who participated in a telehealth diagnostic evaluation for ASD that included online administration of the KBIT-2. Participants were invited to complete the KBIT-2 a second time during an in-person study visit. RESULTS: Pearson's correlation coefficients suggested acceptable to good reliability between online and in-person administration. Although most participants' online and in-person scores were within one standard deviation of each other, results suggested statistically significant differences between scores derived from the two modalities. Additionally, 19-26% of participants (depending on domain examined) had scores that differed by more than one standard deviation. Notably, all but one of these participants was under the age of 12 years. CONCLUSION: Findings suggest that online administration of the KBIT-2 is likely appropriate for older children and adolescents with ASD. However, additional research is needed to test online administration of intellectual assessments for children with ASD.
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Forestation is widely proposed for carbon dioxide (CO2) removal, but its impact on climate through changes to atmospheric composition and surface albedo remains relatively unexplored. We assessed these responses using two Earth system models by comparing a scenario with extensive global forest expansion in suitable regions to other plausible futures. We found that forestation increased aerosol scattering and the greenhouse gases methane and ozone following increased biogenic organic emissions. Additionally, forestation decreased surface albedo, which yielded a positive radiative forcing (i.e., warming). This offset up to a third of the negative forcing from the additional CO2 removal under a 4°C warming scenario. However, when forestation was pursued alongside other strategies that achieve the 2°C Paris Agreement target, the offsetting positive forcing was smaller, highlighting the urgency for simultaneous emission reductions.
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The prognosis of early non-small-cell lung cancer (eNSCLC) remains poor. An understanding of current therapies and outcomes can provide insights into how novel therapies can be integrated into clinics. We conducted a large, retrospective, population-based cohort study of patients with de novo eNSCLC (stages IB, IIA, IIB, and IIIA) diagnosed in Alberta, Canada, between 2010 and 2019. The primary objectives were to describe treatment patterns and survival outcomes among patients with eNSCLC. A total of 5126 patients with eNSCLC were included. A total of 45.3% of patients were referred to a medical oncologist, ranging from 23.7% in stage IB to 58.3% in IIIA. A total of 23.6% of patients initiated systemic therapy (ST), ranging from 3.5% in stage IB to 38.5% in IIIA. For stage IIB and IIIA individuals who received surgery, adjuvant ST was associated with a decreased likelihood of death (hazard ratios (HR) of 0.77 (95% CI: 0.56-1.07) and 0.69 (95% CI: 0.54-0.89), respectively). In a Canadian real-world setting, stage IIB and IIIA patients who received adjuvant ST tended to have better survival than patients who did not, but future studies that provide adjustment of additional confounders are warranted. Examining referral pathways that account for disparities based on age, sex, and comorbidities in the real world would also provide further insights.
Subject(s)
Carcinoma, Non-Small-Cell Lung , Lung Neoplasms , Small Cell Lung Carcinoma , Humans , Carcinoma, Non-Small-Cell Lung/drug therapy , Cohort Studies , Retrospective Studies , Lung Neoplasms/drug therapy , Alberta , Delivery of Health CareABSTRACT
Increased risks associated with Coronavirus disease 2019 (COVID-19) among individuals with autism spectrum disorder (ASD) combined with previous reports of heightened vaccine hesitancy among parents of children with ASD indicate the need for a better understanding of attitudes and behaviors related to COVID-19 vaccines among the ASD community. This study is the first to our knowledge to use a mixed-methods approach to understand attitudes toward COVID-19 vaccines among parents of children with ASD and autistic adults. Participants were 135 members of the ASD community residing in the state of Arizona (99 parents of children with ASD and 36 autistic adults) who responded to the third (Spring 2021) and fourth (Summer 2021) time points of a larger longitudinal online survey. Quantitative findings indicated that autistic adults had slightly more favorable attitudes toward COVID-19 vaccines than parents, and attitudes in both subsamples became more positive over time. However, both parents and autistic adults reported COVID-19 vaccine uptake that was consistent with or better than the general population at both time points. Thematic analysis of responses to open-ended questions identified five themes that characterized factors that contributed to participants' decisions about COVID-19 vaccinations, including: (1) Desiring a Return to Normalcy, (2) Protection of Self and Others, (3) Previous Experience with COVID-19 (4) Science and Medical Professionals,and (5) Skepticism Regarding Safety, Effectiveness, and Need. Current findings combined with emerging literature paint a relatively optimistic picture about COVID-19 vaccine acceptance in the ASD community.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Child , Adult , Humans , COVID-19 Vaccines , COVID-19/prevention & control , ParentsABSTRACT
Use of telehealth assessments for toddlers at increased likelihood of autism spectrum disorder (ASD) began prior to the global COVID-19 pandemic; however, the value of telehealth assessments as an alternative to in-person assessment (IPA) became clearer during the pandemic. The Naturalistic Observation Diagnosis Assessment (NODA™), previously demonstrated as a valid and reliable tool to evaluate asynchronous behaviors for early diagnosis, was enhanced to add synchronous collection of behaviors to assist clinicians in making a differential diagnosis of ASD. This study was conducted to validate the information gathered through NODA-Enhanced (NODA-E™) as compared to a gold standard IPA. Forty-nine toddlers aged 16.0-32.1 months of age, recruited through community pediatric offices and a tertiary ASD clinic, participated in both NODA-E and IPA assessments. There was high agreement between the two assessment protocols for overall diagnosis (46 of 49 cases; 93.6%; κ = .878), specific diagnostic criteria for social communication and social interaction (SCI; range 95.9-98%; κ = .918-.959), and for two of four criteria specified for restricted and repetitive behaviors (RRB; range 87.8-98%; κ = .755 and .959). There was lower agreement for two subcategories of RRBs (range 65.3-67.3%; κ = .306 and .347). NODA-E is a tool that can assist clinicians in making reliable and valid early ASD diagnoses using both asynchronous and synchronous information gathered via telehealth and offers an additional tool within a clinician's assessment toolbox.
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The current study examined differences between parent report and diagnostician direct assessment of receptive language, expressive language, and fine motor abilities in toddlers with autism spectrum disorder (ASD) and other delays. Additionally, this study examined whether parent-diagnostician consistency varied by child diagnosis and sex assigned at birth (SAB). Initial mixed analysis of variances (ANOVAs) were conducted using data from a sample of 646 toddlers to examine whether parent-diagnostician consistency differed by child diagnosis. Matched samples (using child age, SAB, and nonverbal IQ) were then created within each diagnostic group and mixed ANOVAs were conducted to examine if consistency was similar in matched diagnostic subsamples and whether it differed by SAB. Findings from the full sample mostly replicated previous research that has documented consistency between parent report and direct observation regardless of child diagnosis. However, when examined in matched diagnostic subgroups, more nuanced patterns were observed. Parent report of receptive language was lower in ASD and ASD features subgroups and parent report of fine motor skills was lower than direct observation in the ASD, ASD features, and developmental delay groups. When examining the moderating effect of SAB, only expressive language was impacted for children in the ASD group. Results indicate the importance of considering child demographic characteristics and that child SAB may impact parent report and/or diagnostician perception of expressive language.
Subject(s)
Autism Spectrum Disorder , Language Development Disorders , Infant, Newborn , Humans , Child, Preschool , Autism Spectrum Disorder/diagnosis , Language , Language Development , Language Development Disorders/diagnosis , Language TestsABSTRACT
The climate feedback determines how Earth's climate responds to anthropogenic forcing. It is thought to have been more negative in recent decades due to a sea surface temperature "pattern effect," whereby warming is concentrated in the western tropical Pacific, where nonlocal radiative feedbacks are very negative. This phenomenon has however primarily been studied within climate models. We diagnose a pattern effect from historical records as an evolution of the climate feedback over the past five decades. Our analysis assumes a constant rate of change of the climate feedback, which is justified post hoc. We find a decrease in climate feedback by 0.8 ± 0.5 W m-2 K-1 over the past 50 years, corresponding to a reduction in climate sensitivity. Earth system models' climate feedbacks instead increase over this period. Understanding and simulating this historical trend and its future evolution are critical for reliable climate projections.
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Few studies have examined differences in autism spectrum disorder (ASD) phenotype between children from multiplex and simplex families at the time of diagnosis. The present study used an age- and gender-matched, community-based sample (n = 105) from the southwestern United States to examine differences in ASD symptom severity, cognitive development, and adaptive functioning. No significant differences between children from multiplex and simplex families were observed. Exploratory analysis revealed that parents underreported receptive and expressive language and fine motor skills compared to professional observation, especially among children from multiplex families. These findings suggest that diagnosticians may need to consider family structure when choosing and interpreting assessments of receptive language, expressive language, and fine motor skills.
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Sphingosine 1-phosphate lyase (SGPL1) insufficiency (SPLIS) is a syndrome which presents with adrenal insufficiency, steroid-resistant nephrotic syndrome, hypothyroidism, neurological disease, and ichthyosis. Where a skin phenotype is reported, 94% had abnormalities such as ichthyosis, acanthosis, and hyperpigmentation. To elucidate the disease mechanism and the role SGPL1 plays in the skin barrier we established clustered regularly interspaced short palindromic repeats-Cas9 SGPL1 KO and a lentiviral-induced SGPL1 overexpression (OE) in telomerase reverse-transcriptase immortalised human keratinocytes (N/TERT-1) and thereafter organotypic skin equivalents. Loss of SGPL1 caused an accumulation of S1P, sphingosine, and ceramides, while its overexpression caused a reduction of these species. RNAseq analysis showed perturbations in sphingolipid pathway genes, particularly in SGPL1_KO, and our gene set enrichment analysis revealed polar opposite differential gene expression between SGPL1_KO and _OE in keratinocyte differentiation and Ca2+ signaling genesets. SGPL1_KO upregulated differentiation markers, while SGPL1_OE upregulated basal and proliferative markers. The advanced differentiation of SGPL1_KO was confirmed by 3D organotypic models that also presented with a thickened and retained stratum corneum and a breakdown of E-cadherin junctions. We conclude that SPLIS associated ichthyosis is a multifaceted disease caused possibly by sphingolipid imbalance and excessive S1P signaling, leading to increased differentiation and an imbalance of the lipid lamellae throughout the epidermis.
Subject(s)
Ichthyosis , Sphingolipids , Humans , Calcium/metabolism , Aldehyde-Lyases/genetics , Aldehyde-Lyases/metabolism , Lysophospholipids/metabolism , Sphingosine/genetics , Sphingosine/metabolism , Ichthyosis/geneticsABSTRACT
BACKGROUND Vernix caseosa peritonitis (VCP) is a rare complication that typically presents following an otherwise uneventful cesarean section. Leakage of vernix caseosa into the peritoneum is thought to elicit a granulomatous foreign body reaction. Symptoms can be similar to other acute abdominal conditions, and diagnosis is confirmed by intraoperative findings and histological examination. Peritoneal lavage with supportive measures is the mainstay of treatment and recovery. CASE REPORT Case 1 was a 30-year-old woman who developed right iliac fossa pain, fever, tachycardia, and tachypnea less than a week after her lower segment cesarean section (LSCS). She underwent a laparoscopy for a peritonitic abdomen and concern for intra-abdominal sepsis. A peritoneal biopsy demonstrated histological changes consistent with VCP. Case 2 was a 39-year-old woman who underwent a LSCS. After discharge, she re-presented with generalized abdominal pain. With computed tomography (CT) scan findings suggestive of appendicitis, an appendectomy was performed, and vernix caseosa was detected in all quadrants. Case 3 was a 33-year-old woman who presented with fever, vomiting, diarrhea, and iliac fossa pain 9 days following an LSCS. She was given analgesia and antibiotics for a pelvic fluid collection noted on CT scan. She re-presented with tense swelling and pain above her cesarean section incision. Laparoscopy revealed adhesions over the lower abdomen and pelvis and white plaques suggestive of vernix caseosa along the peritoneal side walls. CONCLUSIONS The rising incidence of cesarean births worldwide creates the potential for increased numbers of VCP cases. Greater recognition of VCP is warranted to prevent unnecessary procedures.
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Abdomen, Acute , Peritonitis , Vernix Caseosa , Infant, Newborn , Humans , Female , Pregnancy , Adult , Abdomen, Acute/etiology , Cesarean Section/adverse effects , Peritonitis/etiology , PeritoneumABSTRACT
OBJECTIVE: The objective of this study was to implement a validated, university-based early detection program, the Get SET Early model, in a community-based setting. Get SET was developed to improve Screening, Evaluation, and Treatment referral practices. Specifically, its purpose was to lower the age of diagnosis and enable toddlers with autism spectrum disorder (ASD) to begin treatment by 36 months. METHODS: One hundred nine pediatric health care providers were recruited to administer the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist at 12-month, 18-month, and 24-month well-baby visits and referred toddlers whose scores indicated the need for a developmental evaluation. Licensed psychologists were trained to provide diagnostic evaluations to toddlers as young as 12 months. Mean age of diagnosis was compared with current population rates. RESULTS: In 4 years, 45,504 screens were administered at well-baby visits, and 648 children were evaluated at least 1 time. The overall median age for ASD diagnosis was 22 months, which is significantly lower than the median age reported by the CDC (57 months). For children screened at 12 months, the age of first diagnosis was significantly lower at 15 months. Of the 350 children who completed at least 1 follow-up evaluation, 323 were diagnosed with ASD or another delay, and 239 (74%) were enrolled in a treatment program. CONCLUSION: Toddlers with ASD were diagnosed nearly 3 years earlier than the most recent CDC report, which allowed children to start a treatment program by 36 months. Overall, Get SET Early was an effective strategy for improving the current approach to screening, evaluation, and treatment. Efforts to demonstrate sustainability are underway.
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Autism Spectrum Disorder , Infant , Humans , Child , Child, Preschool , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Checklist , Communication , Health Personnel , Referral and ConsultationABSTRACT
The impact of otter trawling on the relationship between functional traits of benthic invertebrates and specific biogeochemical processes were investigated in the oligotrophic Cretan Sea. The fishery is managed through a seasonal closure during the summer. During two seasons (winter and summer) replicate samples were taken from the field from a commercial trawl ground and an adjacent control area. Environmental parameters related to sediment biogeochemistry were measured including particulate organic carbon, sedimentary organic carbon, bottom water and sedimentary chlorophyll a and phaeopigment concentrations as well as benthic oxygen consumption. A significant impact of trawling was recorded only for bottom water chlorophyll and sedimentary organic carbon. Furthermore, the links between species traits and specific ecosystem processes were affected by trawling, highlighting the importance of unique functional modalities on ecosystem functioning. The traits that mostly influenced benthic biogeochemistry in the control sites were related to bioturbation and burrowing activities. In contrast, in the trawled sites, the associated traits were related to more opportunistic lifestyles and deposit feeding species that do not act as bioturbators. Thus, under trawling disturbance, this shift can decouple the species-sediment relations and affect nutrient cycling.
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Split air conditioners (ACs) are the most used appliance for space cooling worldwide. The phase-down of refrigerants with high global warming potential (GWP) prescribed by the Kigali Amendment to the Montreal Protocol has triggered a major effort to find less harmful alternative refrigerants. HFC-32 is currently the most common refrigerant to replace HFC-410A in split ACs. The GWP of HFC-32 is about one-third that of HFC-410A but still considerably higher than that of a growing number of nonfluorinated alternatives like propane with a GWP of <1, which have recently become commercially available for split ACs. Here, we show that a switch to propane as an energy-efficient and commercially available low-GWP alternative in split ACs could avoid 0.09 (0.06 to 0.12) °C increase in global temperature by the end of the century. This is significantly more than the 0.03 (0.02 to 0.05) °C avoided warming from a complete switch to HFC-32 in split ACs.
Subject(s)
Air Pollutants/analysis , Global Warming , Hydrocarbons, Fluorinated/analysis , Propane , Sustainable Development , TemperatureABSTRACT
Scientifically rigorous guidance to policy makers on mitigation options for meeting the Paris Agreement long-term temperature goal requires an evaluation of long-term global-warming implications of greenhouse gas emissions pathways. Here we employ a uniform and transparent methodology to evaluate Paris Agreement compatibility of influential institutional emission scenarios from the grey literature, including those from Shell, BP, and the International Energy Agency. We compare a selection of these scenarios analysed with this methodology to the Integrated Assessment Model scenarios assessed by the Intergovernmental Panel on Climate Change. We harmonize emissions to a consistent base-year and account for all greenhouse gases and aerosol precursor emissions, ensuring a self-consistent comparison of climate variables. An evaluation of peak and end-of-century temperatures is made, with both being relevant to the Paris Agreement goal. Of the scenarios assessed, we find that only the IEA Net Zero 2050 scenario is aligned with the criteria for Paris Agreement consistency employed here. We investigate root causes for misalignment with these criteria based on the underlying energy system transformation.
Subject(s)
Goals , Greenhouse Gases , Climate Change , Global Warming/prevention & control , TemperatureABSTRACT
BACKGROUND: The unprecedented challenges introduced by the Coronavirus disease 2019 (COVID-19) pandemic may be amplified for children with autism spectrum disorder (ASD) and their families. AIMS: The current study aimed to describe the experiences of children with ASD and their families during the pandemic and to identify the needs of this community during emergency situations. METHODS AND PROCEDURES: Participants were 122 parents of 122 children and adolescents (aged 3-18 years; one parent per family participated) with ASD living in Arizona, USA who participated in the first time point (July/August 2020) of a larger longitudinal survey study. A qualitative approach based in grounded theory methodology was used to analyze six open-ended survey questions. OUTCOMES AND RESULTS: The resulting conceptual model included a core category, Longing for Stability, and four main categories: Public Health Measures Yielding New Challenges and Unexpected Gains, Experiencing Abrupt Changes across Developmental Domains, Changing Family Dynamics, and Protective Factors. CONCLUSIONS: Findings add to limited research examining whether, and how, emergency events uniquely impact the ASD community, identifying potential methods by which services can be proactively adapted to best support the needs of children with ASD.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Adolescent , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , COVID-19/epidemiology , Child , Humans , Pandemics , ParentsABSTRACT
BACKGROUND: Point-of-care ultrasound (POCUS) graduate medical education is expanding across many specialties, but a lack of trained faculty is a common barrier. Even well-designed faculty development programs struggle with retention, yet little is known about the experiences of practicing physicians learning POCUS. Our objective is to explore the experiences of clinician-educators as they integrate POCUS into their clinical and teaching practices to help inform curriculum design. METHODS: Qualitative study using instrumental case study design to analyze interview data from 18 internal medicine clinician-educators at 3 academic health centers. Interviewees were recruited by program directors at each site to include participants with a range of POCUS use patterns. Interviews took place from July-August 2019. RESULTS: Analysis yielded 6 themes: teaching performance, patient care, curriculum needs, workflow and access, administrative support, and professional engagement. Participants felt POCUS enhanced their teaching skills, clinical decision making, and engagement with patients. The themes highlighted the importance of longitudinal supervision and feedback, streamlined integration of POCUS into clinical workflow, and administrative support of time and resources. Interviewees reported learning and teaching POCUS helped combat burn-out and enhance their sense of professional engagement. CONCLUSIONS: Learning POCUS as a practicing clinician-educator is a complicated endeavor that must take into account mastery of psychomotor skills, existing practice habits, and local institutional concerns. Based upon the themes generated from this study, we make recommendations to help guide POCUS faculty development curriculum design. Although this study focused on internists, the findings are likely generalizable to other specialties with growing interest in POCUS education.
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Motivation , Point-of-Care Systems , Faculty , Humans , Internal Medicine/education , UltrasonographyABSTRACT
The male preponderance in autism spectrum disorder (ASD) led to the hypothesis that aspects of female biology are protective against ASD. Females with ASD (ASD-F) report more compensatory behaviors (i.e. "camouflaging") to overcome ASD-related social differences, which may be a mechanism of protection. No studies have examined sex-related brain pathways supporting camouflaging in ASD-F, despite its potential to inform mechanisms underlying the ASD sex bias. We used functional connectivity (FC) to investigate "sex-atypical" and "sex-typical" FC patterns linked to camouflaging in adults with ASD and examined multimodal coherence of findings via structural connectometry. Exploratory associations with cognitive/emotional functioning examined the adaptive nature of FC patterns. We found (i) "sex-atypical" FC patterns linked to camouflaging in the hypothalamus and precuneus and (ii) "sex-typical" patterns in the right anterior cingulate and anterior parahippocampus. Higher hypothalamic FC with a limbic reward cluster also correlated with better cognitive control/emotion recognition. Structural connectometry validated FC results with consistent brain pathways/effect patterns implicated in ASD-F. In summary, "male-typical" and "female-typical" brain connectivity patterns support camouflaging in ASD-F in circuits implicated in reward, emotion, and memory retrieval. "Sex-atypical" results are consistent with fetal steroidogenic/neuroinflammatory hypotheses. However, female genetics/biology may contribute to "female-typical" patterns implicated in camouflaging.
Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Male , Adult , Humans , Female , Autism Spectrum Disorder/diagnostic imaging , Magnetic Resonance Imaging/methods , Brain/diagnostic imaging , Brain Mapping/methods , Neural Pathways/diagnostic imagingABSTRACT
Anthropogenic activity is changing Earth's climate and ecosystems in ways that are potentially dangerous and disruptive to humans. Greenhouse gas concentrations in the atmosphere continue to rise, ensuring that these changes will be felt for centuries beyond 2100, the current benchmark for projection. Estimating the effects of past, current, and potential future emissions to only 2100 is therefore short-sighted. Critical problems for food production and climate-forced human migration are projected to arise well before 2100, raising questions regarding the habitability of some regions of the Earth after the turn of the century. To highlight the need for more distant horizon scanning, we model climate change to 2500 under a suite of emission scenarios and quantify associated projections of crop viability and heat stress. Together, our projections show global climate impacts increase significantly after 2100 without rapid mitigation. As a result, we argue that projections of climate and its effects on human well-being and associated governance and policy must be framed beyond 2100.
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Climate Change , Greenhouse Gases , Anthropogenic Effects , Atmosphere , Ecosystem , HumansABSTRACT
Introduction: Point-of-care ultrasound (POCUS) education is growing throughout medical education, but many institutions lack POCUS-trained faculty. Interprofessional education offers a strategy for expanding the pool of available teachers while providing an opportunity for collaboration between health professional students. Methods: Six students enrolled in the diagnostic medical sonography (DMS) program participated in a case-based, train-the-trainer session to practice a standardized approach for POCUS instruction. They then served as coaches to 25 first-year internal medicine residents learning to perform ultrasound exams of the kidneys, bladder, and aorta. Course assessment included an objective structured exam (OSCE), coaching evaluations, and course evaluations. Results: Residents scored an average of 81% (71.3 out of 88 points, SD = 7.5) on the OSCE. Residents rated the DMS student-coaches positively on all teacher evaluation questions. Both the residents and DMS student-coaches gave positive course evaluations scores. Discussion: An interprofessional workshop with DMS students coaching internal medicine residents was an effective strategy for teaching POCUS skills. This approach may offer a solution for programs wanting to implement POCUS training with limited faculty expertise or time.
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Physicians , Students, Medical , Curriculum , Humans , Point-of-Care Systems , UltrasonographyABSTRACT
PROMs are part of routine measurement for hip and knee replacement in Alberta, Canada. We provide an overview of how PROMs are implemented in routine care, and how we use PROMs data for decision-making at different levels within the health system. The Alberta Bone and Joint Health Institute (ABJHI) ran a randomized controlled trial to determine the effectiveness and cost-effectiveness of an evidence-based care pathway for hip and knee arthroplasty in 2004. The study included several PROMs questionnaires: Western Ontario and McMaster Universities Osteoarthritis Index, Health Utility Index, Short Form 36 and the EQ-5D-3L. Subsequently, the focus shifted to spread and scale of the care pathway provincially. WOMAC and EQ-5D-3L and a patient experience survey were selected for provincial adoption - captured before surgery, three-months post-surgery, and 12-months post-surgery. These PROMs data were integrated into research and routine clinical practice at the micro, meso and macro levels. At the micro level, PROMs data are used at the individual patient and provider level for patients to provide input on their care and as a tool to communicate with their healthcare providers. We examined the relationship of appropriateness and patient reported outcomes in a prospective cohort study. We evaluated whether routinely collected PROMs could be integrated into a patient decision aid to better inform shared decision making. At the meso level, continuous quality improvement reports are provided routinely to individual health care providers, hospitals and clinics on their performance against the measurement framework and standard key performance indicators. At the macro level, PROMs data are used to evaluate system performance by comparing outcomes across different jurisdictions or over time and support health policy decision making. Combined with administrative databases, we have used simulation models to reflect transition through the continuum of care from disease onset through end-stage care regarding the burden of disease, healthcare resource requirements and associated healthcare costs. The addition of PROMs data in clinical repositories and analyses enables the system to identify and address issues of continuous quality improvement against a measurement framework of performance indicators and to explicitly recognize the trade-offs that are inherent in any resource-constrained system.