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Background Established condition-specific patient-reported outcome measures for varicose veins are limited to the measurement of health status and function. A treatment satisfaction measure is needed to understand patient satisfaction with different treatment options. The aim of this study was to design a Venous Treatment Satisfaction Questionnaire (VenousTSQ) that would be ready for large-scale data collection and psychometric evaluation. Methods Relevant items were selected from the -TSQ Item Library and new items were designed where necessary. A draft VenousTSQ was prepared using the existing AneurysmTSQ as a template. Fifteen interviews were conducted from 4 days to 16 months after the procedure. The interviews were designed to elicit important sources of satisfaction or dissatisfaction before completion of draft questionnaires. The VenousTSQ drafts were modified between sets of interviews until no further changes were required. Results The final VenousTSQ consists of two questionnaires: VenousTSQ early (VenousTSQe) and VenousTSQ status (VenousTSQs). Items that need be asked only once are in the VenousTSQe, whereas those that can usefully be asked more than once are in the VenousTSQs. Of the 16 unique items forming the VenousTSQ, 12 were from the -TSQ Item Library. Only 1 of these 12 required significant modification. Conclusions The VenousTSQ represents a condition-specific psychological outcome measure for varicose veins, enabling patient satisfaction or dissatisfaction with such treatments to be measured. Large-scale data collection is under way to establish optimal scoring, quantitative validity, and reliability of the VenousTSQ.

This study explored the barriers and facilitators to hepatitis C virus (HCV) treatment for Aboriginal and Torres Strait Islander peoples in rural South Australia as viewed from a healthcare provider perspective in the era of direct acting antivirals (DAAs). Phase 1 was a qualitative systematic review examining the barriers and enablers to diagnosis and treatment amongst Indigenous peoples living with HCV worldwide. Phase 2 was a qualitative descriptive study with healthcare workers from six de-identified rural and regional Aboriginal Community-Controlled Health Services in South Australia. The results from both methods were integrated at the analysis phase to understand how HCV treatment could be improved for rural Aboriginal and Torres Strait Islander peoples. Five main themes emerged: the importance of HCV education, recognizing competing social and cultural demands, the impact of holistic care delivery and client experience, the effect of internal barriers, and overlapping stigma, discrimination, and shame determine how Indigenous peoples navigate the healthcare system and their decision to engage in HCV care. Continued efforts to facilitate the uptake of DAA medications by Aboriginal and Torres Strait peoples in rural areas should utilize a multifaceted approach incorporating education to community and cultural awareness to reduce stigma and discrimination.

Background Comorbidity is increasingly common in kidney transplant recipients, yet the implications for transplant outcomes are not fully understood. We analyzed the relationship between recipient comorbidity and survival outcomes in a UK-wide prospective cohort study-Access to Transplantation and Transplant Outcome Measures (ATTOM). Methods A total of 2100 adult kidney transplant recipients were recruited from all 23 UK transplant centers between 2011 and 2013. Data on 15 comorbidities were collected at the time of transplantation. Multivariable Cox regression models were used to analyze the relationship between comorbidity and 2-year graft survival, patient survival, and transplant survival (earliest of graft failure or patient death) for deceased-donor kidney transplant (DDKT) recipients (n = 1288) and living-donor kidney transplant (LDKT) recipients (n = 812). Results For DDKT recipients, peripheral vascular disease (hazard ratio [HR] 3.04, 95% confidence interval [CI]: 1.37-6.74; P = 0.006) and obesity (HR 2.27, 95% CI: 1.27-4.06; P = 0.006) were independent risk factors for graft loss, while heart failure (HR 3.77, 95% CI: 1.79-7.95; P = 0.0005), cerebrovascular disease (HR 3.45, 95% CI: 1.72-6.92; P = 0.0005), and chronic liver disease (HR 4.36, 95% CI: 1.29-14.71; P = 0.018) were associated with an increased risk of mortality. For LDKT recipients, heart failure (HR 3.83, 95% CI: 1.15-12.81; P = 0.029) and diabetes (HR 2.23, 95% CI: 1.03-4.81; P = 0.042) were associated with poorer transplant survival. Conclusions The key comorbidities that predict poorer 2-year survival outcomes after kidney transplantation have been identified in this large prospective cohort study. The findings will facilitate assessment of individual patient risks and evidence-based decision making.

Visual hallucinations are common in older people and are especially associated with ophthalmological and neurological disorders, including dementia and Parkinson’s disease. Uncertainties remain whether there is a single underlying mechanism for visual hallucinations or they have different disease-dependent causes. However, irrespective of mechanism, visual hallucinations are difficult to treat. The National Institute for Health Research (NIHR) funded a research programme to investigate visual hallucinations in the key and high burden areas of eye disease, dementia and Parkinson’s disease, culminating in a workshop to develop a unified framework for their clinical management. Here we summarise the evidence base, current practice and consensus guidelines that emerged from the workshop.Irrespective of clinical condition, case ascertainment strategies are required to overcome reporting stigma. Once hallucinations are identified, physical, cognitive and ophthalmological health should be reviewed, with education and self-help techniques provided. Not all hallucinations require intervention but for those that are clinically significant, current evidence supports pharmacological modification of cholinergic, GABAergic, serotonergic or dopaminergic systems, or reduction of cortical excitability. A broad treatment perspective is needed, including carer support. Despite their frequency and clinical significance, there is a paucity of randomised, placebo-controlled clinical trial evidence where the primary outcome is an improvement in visual hallucinations. Key areas for future research include the development of valid and reliable assessment tools for use in mechanistic studies and clinical trials, transdiagnostic studies of shared and distinct mechanisms and when and how to treat visual hallucinations.

AIM To design an individualised questionnaire to measure the impact of cancer and its treatments on quality of life (QoL). MATERIALS & METHODS: Design of the Cancer-Dependent Quality of Life (CancerDQoL) questionnaire was based on the Audit of Diabetes Dependent QoL (ADDQoL) questionnaire and related -DQoLs for other conditions. Item selection, face validity and content validity were established through clinician and patient ratings of the importance and relevance of 60 domains from the -DQoL Item Library, and semi-structured interviews with 25 English-speaking participants with a range of cancers attending a cancer centre in Zimbabwe (age range: 25-78 years; 16 women, 9 men). Ten interviews were subsequently conducted with UK English-speaking participants with a range of cancers attending Maggie's Centres in London and Dundee (age range: 40-76; 5 women, 5 men) to adapt the CancerDQoL for UK use. RESULTS The first draft of the CancerDQoL contained 25 domain-specific items from the -DQoL Item Library plus four overview items. Zimbabwean participants indicated that cancer negatively impacted on all life domains included, except 'having children'. Weighted impact (impact ratings multiplied by importance) was most negative for 'sex life', 'depend on others' and 'physical capability'. The least negative weighted impact was found for 'having children', 'spiritual/religious life' and 'past medical/self-care'. UK interviews confirmed no new items were required. CONCLUSIONS Face and content validity of the CancerDQoL is established for an adult sample of English-speaking cancer patients in Zimbabwe and confirmed in an adaptation following UK interviews.

BackgroundInjury is a leading contributor to the global disease burden in children and places children at risk for adverse and lasting impacts on their health-related quality of life (HRQoL) and development. This study aimed to identify key predictors of HRQoL following injury in childhood and adolescence.MethodsData from 2259 injury survivors (ResultsMean PedsQL total score increased with higher socioeconomic status and decreased with increasing age. It was lower for transport-related incidents, ≥1 comorbidities, intentional injuries, spinal cord injury, vertebral column fracture, moderate/severe traumatic brain injury and fracture of patella/tibia/fibula/ankle. Mean PedsQL physical score was lower for females, fracture of femur, fracture of pelvis and burns. Mean PedsQL psychosocial score was lower for asphyxiation/non-fatal submersion and muscle/tendon/dislocation injuries.ConclusionsPostinjury HRQoL was associated with survivors’ socioeconomic status, intent, mechanism of injury and comorbidity status. Patterns of physical and psychosocial functioning postinjury differed according to sex and nature of injury sustained. The findings improve understanding of the long-term individual and societal impacts of injury in the early part of life and guide the prioritisation of prevention efforts, inform health and social service planning to help reduce injury burden, and help guide future Global Burden of Disease estimates.

ObjectiveTo examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation.DesignLongitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach.SettingCompletion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide.Participants101 incident deceased-donor (DD) and 94 incident living-donor (LD) kidney transplant recipients, together with 165 patients on the waiting list (WL) from 18 UK centres recruited to the Access to Transplantation and Transplant Outcome Measures (ATTOM) programme completed PROMs at recruitment (November 2011 to March 2013) and 1 year follow-up. Forty-one of the 165 patients on the WL received a DD transplant and 26 received a LD transplant during the study period, completing PROMs initially as patients on the WL, and again 1 year post-transplant. A subsample of 10 LD and 10 DD recipients participated in qualitative semi-structured interviews.ResultsLD recipients were younger, had more educational qualifications and more often received a transplant before dialysis. Controlling for these and other factors, cross-sectional analyses at 12 months post-transplant suggested better QoL, renal-dependent QoL and treatment satisfaction for LD than DD recipients. Patients on the WL reported worse outcomes compared with both transplant groups. However, longitudinal analyses (controlling for pre-transplant differences) showed that LD and DD recipients reported similarly improved health status and renal-dependent QoL (pConclusionsWhile cross-sectional analyses suggested LD kidney transplantation leads to better QoL and treatment satisfaction, longitudinal assessment showed similar QoL improvements in PROMs for both transplant groups, with better outcomes than for those still wait-listed. Regardless of transplant type, clinicians need to be aware that managing expectations is important for facilitating patients’ adjustment post-transplant.

Limited health literacy is common in patients with chronic kidney disease (CKD) and has been variably associated with adverse clinical outcomes. The prevalence of limited health literacy is lower in kidney transplant recipients than in individuals starting dialysis, suggesting selection of patients with higher health literacy for transplantation. We investigated the relationship between limited health literacy and clinical outcomes, including access to kidney transplantation, in a prospective UK cohort study of 2,274 incident dialysis patients aged 18-75 years. Limited health literacy was defined by a validated Single Item Literacy Screener (SILS). Multivariable regression was used to test for association with outcomes after adjusting for age, sex, socioeconomic status (educational level and car ownership), ethnicity, first language, primary renal diagnosis, and comorbidity. In fully adjusted analyses, limited health literacy was not associated with mortality, late presentation to nephrology, dialysis modality, haemodialysis vascular access, or pre-emptive kidney transplant listing, but was associated with reduced likelihood of listing for a deceased-donor transplant (hazard ratio [HR] 0.68; 95% confidence interval [CI] 0.51-0.90), receiving a living-donor transplant (HR 0.41; 95% CI 0.19-0.88), or receiving a transplant from any donor type (HR 0.65; 95% CI 0.44-0.96). Limited health literacy is associated with reduced access to kidney transplantation, independent of patient demographics, socioeconomic status, and comorbidity. Interventions to ameliorate the effects of low health literacy may improve access to kidney transplantation.

IntroductionIn Australia, the notification rate for hepatitis C is 5 times greater among Aboriginal and Torres Strait Islander peoples than non‑Indigenous populations (164 vs. 35 per 100,000). Infection with Hepatitis C virus is associated with increased morbidity, mortality and health-related costs. Recently, the use of simple, tolerable and short-duration HCV therapies with extremely high efficacy (cure rates >90%) became available through the Pharmaceutical Benefits Scheme (PBS) on 1 March 2016. Objectives and ApproachOverall, this project aims to identify inequities in hepatitis C healthcare for Aboriginal and Torres Strait Islander peoples across SA and NT. By using 19 routinely collected health administration datasets, we will evaluate hepatitis C diagnoses, treatment uptake, and treatment outcomes, with focus on identifying patterns in healthcare access among Aboriginal and Torres Strait Islander people. The study links state-based and federal datasets, including Medicare, Pharmaceutical Benefits Scheme, and National Mortality Database, to hepatitis C notifications reported in SA since 1992 or in NT since 1999 using probabilistic data linkage methodology in a secured online environment. ResultsThe study population includes all hepatitis C notifications recorded in SA and NT, totalling more than 25,000 cases. Preliminary findings will be reported including incidence of hospitalisation, mortality, and morbidity by Aboriginal and Torres Strait Islander status. Conclusion / ImplicationsThis project is of national importance to address hepatitis C related morbidity and mortality in Australia, particularly among Aboriginal and Torres Strait Islander peoples. Now that highly effective direct acting anti-viral treatments are available, it is crucial to ensure key affected populations, including Aboriginal and Torres Strait Islander people, have access to these novel biomedical approaches. Findings will underpin future policy to reduce the burden of hepatitis C across SA and NT populations.

IntroductionAboriginal Community-Controlled Health Services (ACCHSs) routinely collect sexually transmissible infection (STI) and blood-borne virus (BBV) clinical data from individuals through electronic medical records (EMRs). At a population level these data are an underutilised resource and can be used to help drive clinical and public health interventions. Accordingly, we have established a national STI and BBV sentinel surveillance network for ACCHSs —the ATLAS network. Objectives and ApproachIn establishing the ATLAS network, we standardised and automated extraction of deidentified clinical data from multiple EMRs using The University of Melbourne’s GRHANITE™ software. Regular reports are provided to each ACCHS, addressing 12 clinical indicators considered best practice in STI and BBV control and management. Data are used to drive Continuous Quality Improvement strategies, can be aggregated at regional and national levels, and have the ability to link to other surveillance networks also using GRHANITE™. ResultsThe ATLAS network currently includes more than 30 ACCHSs, including urban, regional and remote areas. To date, data have been analysed for >50,000 individuals aged ≥15 years attending medical consultations at ACCHS between January 2016 and December 2018. For clients in the key age-range for STI testing of 15–29 years, the mean annual rate of chlamydia/gonorrhoea testing was 25% (range: 1–59%). The mean annual rate of chlamydia positivity for clients 15–29 years was 3% (range: 0–19%) and the mean annual rate of gonorrhoea positivity was 2% (range: 0–18%). Conclusion / ImplicationsAn integrated network of STI and BBV testing and management data has been successfully established amongst ACCHSs nationally. The ATLAS network can be readily expanded and has the potential to link to other datasets using the GRHANITE™ tool. ATLAS provides a unique data infrastructure with capacity to support novel research programs as well as underpin quality improvement activities within participating sites.

BACKGROUND AND OBJECTIVES: Despite the presence of a universal health care system, it is unclear if there is intercenter variation in access to kidney transplantation in the United Kingdom. This study aims to assess whether equity exists in access to kidney transplantation in the United Kingdom after adjustment for patient-specific factors and center practice patterns.DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: In this prospective, observational cohort study including all 71 United Kingdom kidney centers, incident RRT patients recruited between November 2011 and March 2013 as part of the Access to Transplantation and Transplant Outcome Measures study were analyzed to assess preemptive listing (n=2676) and listing within 2 years of starting dialysis (n=1970) by center.RESULTS: Seven hundred and six participants (26%) were listed preemptively, whereas 585 (30%) were listed within 2 years of commencing dialysis. The interquartile range across centers was 6%-33% for preemptive listing and 25%-40% for listing after starting dialysis. Patient factors, including increasing age, most comorbidities, body mass index >35 kg/m2, and lower socioeconomic status, were associated with a lower likelihood of being listed and accounted for 89% and 97% of measured intercenter variation for preemptive listing and listing within 2 years of starting dialysis, respectively. Asian (odds ratio, 0.49; 95% confidence interval, 0.33 to 0.72) and Black (odds ratio, 0.43; 95% confidence interval, 0.26 to 0.71) participants were both associated with reduced access to preemptive listing; however Asian participants were associated with a higher likelihood of being listed after starting dialysis (odds ratio, 1.42; 95% confidence interval, 1.12 to 1.79). As for center factors, being registered at a transplanting center (odds ratio, 3.1; 95% confidence interval, 2.36 to 4.07) and a universal approach to discussing transplantation (odds ratio, 1.4; 95% confidence interval, 1.08 to 1.78) were associated with higher preemptive listing, whereas using a written protocol was associated negatively with listing within 2 years of starting dialysis (odds ratio, 0.7; 95% confidence interval, 0.58 to 0.9).CONCLUSIONS: Patient case mix accounts for most of the intercenter variation seen in access to transplantation in the United Kingdom, with practice patterns also contributing some variation. Socioeconomic inequity exists despite having a universal health care system.

ObjectivesTo investigate whether people with age-related macular degeneration (AMD) are able to self-detect symptoms and, if so, what symptoms they experience, from whom they first seek help, whether help is sought within the 1 week recommended by the Royal College of Ophthalmologists’ guidelines and reasons for any delay.Methods and analysisA retrospective, cross-sectional survey design. Postal surveys were sent to 4000 members of the UK Macular Society. Inclusion criteria were participants aged >50 years at diagnosis of AMD with diagnosis after August 2008; criteria were met by 621 respondents. The main outcome was reasons for delays in diagnosis for wet AMD. Data were analysed using χ2 and conventional content analysis.ResultsOnly one third (n=199; 32%) of respondents were able to self-detect symptoms. In line with national guidance, over half (n=131; 64%) of those self-detecting symptoms sought help promptly. For those whose initial diagnosis was delayed more than 1 week, 27% had potentially treatable wet AMD requiring urgent treatment to prevent vision loss. Reasons for delay reflected individual & service-related issues, including AMD not being detected in the initial consultation, and individuals not perceiving the urgency for symptom investigation.ConclusionIn practice most patients sought help within 1 week; however, potentially sight-damaging delays occurred from symptom onset to diagnosis. Suggestions for reducing delay include increasing population awareness of AMD symptoms, the need for urgent detection and close monitoring for AMD and signposting patients to appropriate support services to ensure prompt detection of any future signs of wet AMD.

© 2018 Wolters Kluwer Health, Inc. All rights reserved. Background Despite the availability of guidelines for the evaluation of candidates for renal transplantation, variation in access to transplantation exists. This national survey investigates whether center variation exists in the assessment of patients for renal transplantation in the United Kingdom. Methods An online survey, informed by qualitative interviews, was distributed to all UK renal centers. This survey examined center approaches to chronic kidney disease service provision, transplant recipient assessment, education provision, and waitlisting decision making processes. Center reevaluation policies for patients already listed and priorities for future development were also examined. Results All 71 renal centers responded. Of these, 83% reviewed predialysis patients in a low clearance clinic. In 26% of the centers, transplantation was not discussed as a treatment option with all patients. Fourteen centers reported having a dedicated transplant assessment clinic, whereas 28% did not have a formal assessment protocol. Age was an exclusion criterion for listing in 3 centers, all of which had a cutoff at 75 years. Eighty-three percent of the centers excluded patients with a high body mass index. Cardiac investigations were risk-stratified in 90% of centers. Surgical involvement varied with 11% of centers listing patients without formal surgical review. There was no formal protocol in place to reevaluate listed patients in 62% of centers. Conclusions There is wide variation in UK practice patterns for listing patients for renal transplantation, though its impact on access to transplantation is unclear. The extent to which center-specific and patient-specific factors affect access to transplantation requires further analysis in a prospective cohort of patients.

OBJECTIVE PANORAMA, a nine-country cross-sectional type 2 diabetes study, investigated factors associated with quality of life (QoL), health status, and other patient-reported outcome measures (PROMs). RESEARCH DESIGN AND METHODS Patients were randomly or consecutively selected from primary/secondary care. PROMs included the Audit of Diabetes-Dependent Quality of Life (ADDQoL) (generic QoL item and average weighted impact [AWI] scores), Diabetes Treatment Satisfaction Questionnaire (DTSQ) (patient- and physician-completed), Hypoglycemia Fear Survey-II worry subscale, and the EuroQoL–5 Dimension visual analog scale (EQ-VAS) measuring patient-reported health. Multivariable linear regression analyses determined predictors of each PROM including patient characteristics, physician-reported adherence, complications, and glycosylated hemoglobin. RESULTS In 5,813 patients, mean PROM scores indicated that generic QoL approximated “good” (0.93); perceived impact of diabetes on QoL was negative (AWI –1.69). Treatment satisfaction exceeded physicians’ estimates (patient-reported: 29.76; physician-estimated: 27.75), but so did patients’ perceived frequency of hypo-/hyperglycemia. Worry about hypoglycemia (13.27) was apparent. Intensifying treatments to three oral agents or insulin regimens predicted worse QoL (AWI P < 0.01). Insulin alone use predicted worse QoL (generic P < 0.02; AWI P < 0.001) and hypoglycemia worry (P < 0.007). No treatment had significant associations with EQ-VAS health status. CONCLUSIONS Predictors for different PROMs differed markedly and provided insights for understanding and improving these important outcomes. Intensive treatment regimens had significant negative associations with all PROMs, except the EQ-VAS health status measure. The findings demonstrate the importance of measuring QoL alongside health status and other patient-reported outcomes when evaluating diabetes treatments with a view to protecting QoL and facilitating adherence and long-term glycemic control.

Objective To examine the reliability and validity of the Chinese version of the 19-item Audit of Diabetes-Dependent Quality of Life for Taiwan (ADDQoL-CnTW). Methods Linguistic validation procedures for patient-reported outcome measures were used to translate the Taiwan version from the original 19-item UK-English ADDQoL. The psychometric properties of the ADDQoL-CnTW were evaluated in a convenience sample, recruited from outpatient facilities, of 260 patients diagnosed with diabetes mellitus. Results The forced one-factor solution supported one general 19-item factor with all items loading above 0.43, accounting for 51.5% of the variance, although the results of confirmatory factory analysis did not strictly adhere to a one-factor structure. Using Kaiser's Criterion, exploratory factor analysis identified four sub-dimensions but the pattern of loading also confirmed the presence of a large general factor with 11 of 19 items loading ≥0.4 on the first component, accounting for 49.73% of the variance. Internal consistency for the entire scale was 0.94. Convergent and discriminant validity were suggested by a stronger correlation of average weighted impact (AWI) scores with the overview Diabetes-specific QoL item than with the Present QoL item. The Present QoL item correlated better with the World Health Organization Quality of Life-BREF(TW) dimension scores than the Diabetes-specific QoL scores or the AWI scores. Insulin-treated patients reported significantly more negative AWI scores and Diabetes-specific QoL scores than those treated with tablets and/or diet, demonstrating known-groups validity. Conclusions The ADDQoL-CnTW revealed excellent internal consistency reliability, and showed evidence of validity for use in Taiwanese people with diabetes.

BackgroundTo evaluate the psychometric properties of three new condition-specific questionnaires designed to assess outcomes amongst patients under pre-operative surveillance for a small abdominal aortic aneurysm (AAA) or who have undergone aneurysm repair. These tools are the Aneurysm-Dependent Quality of Life measure (AneurysmDQoL), the Aneurysm Symptom Rating Questionnaire (AneurysmSRQ) and the Aneurysm Treatment Satisfaction Questionnaire (AneurysmTSQ).ResultsThe questionnaires were sent to 297 patients with abdominal aortic aneurysm (AAA) or who had undergone AAA repair (using open or endovascular technique) sampled from five UK NHS Trusts. Exploratory Factor Analysis was used to examine factor structure together with reliability analysis. A subset of 65 patients completed the questionnaires a second time four months later. One hundred and ninety-seven patients (178 men; 18 women) provided data for analysis (69% response rate): mean age was 75 years (range 60–95). Nineteen were under pre-operative surveillance for AAA and 178 had undergone AAA repair (70 open repair; 104 endovascular repair; 4 uncertain). Exploratory Factor Analysis of the AneurysmDQoL and the AneurysmTSQ each demonstrated a one-factor structure. The AneurysmSRQ demonstrated a six-factor structure (emotional, weight loss, lower limb, cognitive, general malaise and gastrointestinal symptoms) and a one-factor composite symptom scale. All scales have clean factor structures: item loadings above 0.40, no cross-loadings, and no factors with fewer than three items. Internal consistency reliability was excellent (α = 0.869–0.959) and test-retest reliability good (Intraclass correlation coefficient = 0.70–0.88).ConclusionsThe three new questionnaires have a clear structure and strong reliability and are now ready for use in clinical trials and routine practice, which will allow evaluation of responsiveness to change.

To evaluate the Hypoglycaemia Symptom Rating Questionnaire (HypoSRQ©) and relationships between self-reported hypoglycaemia and hypoglycaemia measured using blinded continuous glucose monitoring (CGM).Diabetes outpatients (n = 113) recruited from Ashford and St. Peter's Hospital completed the HypoSRQ (recent weeks version) and provided clinical information. Thirty participants used blinded CGM for six days and completed the HypoSRQ (24-hour version) for seven days, at the end of each week (7-day version), and after four weeks (recent weeks version).The HypoSRQ had a single-factor structure and excellent internal consistency (α = 0.90). There was high correspondence in recalled symptoms, bother ratings and hypoglycaemic episodes across one week and four weeks (r = 0.84-0.98, p 0.001). HypoSRQ-reported hypoglycaemia correlated significantly with CGM-measured hypoglycaemia (interstitial glucose ≤ 3.9 mmol/l) frequency (r = 0.72, p 0.001) across six days. The magnitude of the correlation increased when the person's own threshold for detecting hypoglycaemia was used (r = 0.78, p 0.001). The number of days (out of six) a person reported symptoms of hypoglycaemia was associated with the number of days CGM detected hypoglycaemia (interstitial glucose ≤ 3.9 mmol/l) (r = 0.83, p 0.001) and remained significant after controlling for covariates.Psychometric properties of the HypoSRQ make it attractive for use in people with insulin-treated diabetes. The HypoSRQ may be a less-invasive and more-economical alternative to CGM.

Background The purpose of the study was to design a measure of patient satisfaction with treatment for macular disease, the MacTSQ, and to carry out psychometric evaluation of the measure. The measure was designed along the lines of the widely used Diabetes Treatment Satisfaction Questionnaire (DTSQ) and sister measures of treatment satisfaction for other conditions including diabetic retinopathy. Information was also gathered during in-depth interviews with 20 people who had experienced one of a range of treatments for macular degeneration. In a prospective study, the newly designed 16-item MacTSQ, was used in a multi-centre, randomised, double-blind clinical trial (the IVAN study) comparing two treatments for neovascular age-related macular degeneration and two treatment schedules: 1. continual monthly treatments (continuous arm), 2. initial 3 monthly treatments then monitoring and retreatment if necessary (discontinuous arm). The MacTSQ was administered after the first three treatments and at 12 and 24 months. Psychometric development was carried out using data from 137 patients. Sensitivity and validity of the MacTSQ were investigated using baseline and 12-month data. Results Exploratory factor analysis yielded two subscales i) convenience, information and overall satisfaction (6 Items: Cronbach’s alpha = 0.740), and ii) safety, efficacy and discomfort (6 Items: alpha = 0.776). Twelve items also loaded on to a single scale (alpha = 0.815). Three items were removed from the scale but retained in the questionnaire for separate analysis where required. Greater satisfaction was reported at time 2 (12 months) than time 1 (after 3 monthly injections) on the safety, efficacy and discomfort subscale (W = 3000.500. p = 0.024, n = 108). Participants whose vision improved reported greater satisfaction than those who had no improvement e.g. U = 1599, p = 0.033. Those in the discontinuous arm reported greater satisfaction on subscale 1 than those in the continuous arm at time one (U = 1870, p = 0.04) and time 2 (U = 1132.5, p = 0.023). This finding suggested a better experience in the discontinuous arm. Conclusions The MacTSQ will be valuable in investigating treatment satisfaction in clinical trials of new treatments or in a routine clinic situation and may highlight ways to improve patients’ experience of treatment.

Objectives This analysis estimates the whole‐of‐system direct costs for people living with dementia in residential care by using a broad health and social care provision perspective and compares it to people without dementia living in residential care. Methods Data were collected from 541 individuals living permanently in 17 care facilities across Australia. The annual cost of health and residential care was determined by using individual resource use data and reported by the dementia status of the individuals. Results The average annual whole‐of‐system cost for people living with dementia in residential care was approximately AU$88 000 (US$ 67 100) per person in 2016. The cost of residential care constituted 93% of the total costs. The direct health care costs were comprised mainly of hospital admissions (48%), pharmaceuticals (31%) and out‐of‐hospital attendances (15%). While total costs were not significantly different between those with and without dementia, the cost of residential care was significantly higher and the cost of health care was significantly lower for people living with dementia. Conclusion This study provides the first estimate of the whole‐of‐system costs of providing health and residential care for people living with dementia in residential aged care in Australia using individual level health and social care data. This predominantly bottom‐up cost estimate indicates the high cost associated with caring for people with dementia living permanently in residential care, which is underestimated when limited cost perspectives or top‐down, population costing approaches are taken.

Background: Living donor kidney transplantation provides more timely access to transplantation and better clinical outcomes than deceased donor kidney transplantation. This study investigated disparities in the utilisation of living donor kidney transplantation in the UK. Methods: 2055 adults undergoing kidney transplantation between November 2011 and March 2013 were prospectively recruited from all 23 UK transplant centres as part of the Access to Transplantation and Transplant Outcome Measures (ATTOM) study. Recipient variables independently associated with receipt of living donor versus deceased donor kidney transplantation were identified. Results: Of 2055 patients, 807 (39.3%) received living donor kidney transplantation and 1248 (60.7%) received deceased donor kidney transplantation. Multivariable modelling demonstrated a significant reduction in the likelihood of living donor kidney transplantation for older age (odds ratio [OR] 0.11, 95% confidence interval [CI] 0.08-0.17, p