Simultaneous pancreas and kidney transplantation: A qualitative study of partners' experiences.

Chronic health conditions often affect the lives of family members as well as the patient themselves. The current study aimed to explore the experiences of partners of individuals with diabetes and chronic kidney disease (CKD) who received a simultaneous pancreas and kidney transplant (SPKT) to understand the wider impact of SPKTs. Eight partners of recipients of SPKT were interviewed about their experiences before and after the transplant.

Psychometric Evaluation of the Cancer Dependent Quality of Life (CancerDQoL) Questionnaire: An Individualised Measure of the Impact of Cancer and Its Treatment on Quality of Life.

Objective: The Cancer Dependent Quality of Life (CancerDQoL) questionnaire asks about the impact of cancer and its treatment on individuals' quality of life (QoL). This study evaluates the psychometric properties of the CancerDQoL in a UK sample.

Methods: Patients (n = 159) with a range of cancers, recruited from Barts Health NHS Trust and Barts Maggie's Centre, completed self-administered questionnaires: CancerDQoL, EQ-5D-VAS (health status), EORTC-QLQ-C30 (predominantly health symptoms/functioning) and W-BQ16 (well-being).

Aged care service use by Aboriginal and Torres Strait Islander people after aged care eligibility assessments, 2017-2019: a population-based retrospective cohort study.

Objective: To characterise the socio-demographic characteristics, aged and health care needs, and aged care services used by older Aboriginal and Torres Strait Islander people assessed for aged care service eligibility.

Study Design: Population-based retrospective cohort study; analysis of Registry of Senior Australians (ROSA) National Historical Cohort data.

Setting, Participants: Aboriginal and Torres Strait Islander people aged 50 years or older who were first assessed for aged care service eligibility (permanent residential aged care, home care package, respite care, or transition care) during 1 January 2017 - 31 December 2019.

Integrating testing for sexually transmissible infections into annual health assessments for Aboriginal and Torres Strait Islander young people: a cross-sectional analysis.

Background: In the context of an expanding syphilis epidemic, we assessed the integration of sexually transmissible infection (STI) testing within annual health assessments for Aboriginal and Torres Strait Islander young people aged 16-29years in Aboriginal Community Controlled Health Services between 2018 and 2020.

Methods: Using routinely collected electronic medical record data from a national sentinel surveillance system (ATLAS), we performed a cross-sectional analysis to calculate the proportion of assessments that integrated any or all of the tests for chlamydia, gonorrhoea, syphilis, and HIV. We used logistic regression to identify correlates of integration of any STI test.

Is the evidence-based medicine movement counter-productive: are randomised controlled trials the best approach to establish evidence in complex healthcare situations?

In the modern era, evidence-based medicine (EBM) has been embraced as the best approach to practising medicine, providing clinicians with 'objective' evidence from clinical research. However, for presentations with complex pathophysiology or from complex social environments, sometimes there remains no evidence, and no amount of research will obtain it. Yet, health researchers continue to undertake randomised controlled trials (RCT) in complex environments, ignoring the risk that participants' health may be compromised throughout the trial process.

Barriers and Facilitators to Hepatitis C Virus (HCV) Treatment for Aboriginal and Torres Strait Islander Peoples in Rural South Australia: A Service Providers' Perspective.

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.

Design of a treatment satisfaction measure for patients undergoing varicose vein treatment: Venous Treatment Satisfaction Questionnaire (VenousTSQ).

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.

The prevalence and significance of gestational cannabis use at an Australian tertiary hospital.

Background: Cannabis is one of the most common non-prescribed psychoactive substances used in pregnancy. The prevalence of gestational cannabis use is increasing.

Aim: The aim was to examine the prevalence of gestational cannabis use and associated pregnancy and neonate outcomes.

Health-Related Quality of Life (HRQoL) Outcomes Following Injury in Childhood and Adolescence Using EuroQol (EQ-5D) Responses with Pooled Longitudinal Data.

Background: Injury is a leading contributor to the global disease burden in children, affecting their health-related quality of life (HRQoL)-yet valid estimates of burden are absent.

Methods: This study pooled longitudinal data from five cohort studies of pediatric injury survivors (5-17 years) at baseline, 1-, 4-, 6-, 12-, and 24- months ( = 2334). HRQoL post-injury was measured using the 3-level EQ-5D utility score (EQ-5D) and five health states (mobility, self-care, activity, pain, anxiety and depression (anxiety)).

Design of an individualised questionnaire to measure the impact of cancer on quality of life: The cancer dependent quality of life (CancerDQoL) questionnaire.

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).

Changes in quality of life (QoL) and other patient-reported outcome measures (PROMs) in living-donor and deceased-donor kidney transplant recipients and those awaiting transplantation in the UK ATTOM programme: a longitudinal cohort questionnaire survey with additional qualitative interviews.

Objective: To examine quality of life (QoL) and other patient-reported outcome measures (PROMs) in kidney transplant recipients and those awaiting transplantation.

Design: Longitudinal cohort questionnaire surveys and qualitative semi-structured interviews using thematic analysis with a pragmatic approach.

Setting: Completion of generic and disease-specific PROMs at two time points, and telephone interviews with participants UK-wide.

Establishment of a sentinel surveillance network for sexually transmissible infections and blood borne viruses in Aboriginal primary care services across Australia: the ATLAS project.

Background: Sexually transmissible infection (STI) and blood-borne virus (BBV) diagnoses data are a core component of the Australian National Notifiable Diseases Surveillance System (NNDSS). However, the NNDSS data alone is not enough to understand STI and BBV burden among priority population groups, like Aboriginal and Torres Strait Islander people, because it lacks testing, treatment and management data. Here, we describe the processes involved in establishing a STI and BBV sentinel surveillance network representative of Aboriginal Community-Controlled Health Services (ACCHS)-known as the ATLAS network-to augment the NNDSS and to help us understand the burden of disease due to STI and BBV among Aboriginal and Torres Strait Islander peoples.

Changes in quality of life, health status and other patient-reported outcomes following simultaneous pancreas and kidney transplantation (SPKT): a quantitative and qualitative analysis within a UK-wide programme.

We examined quality of life (QoL) and other patient-reported outcome measures (PROMs) in 95 simultaneous pancreas and kidney transplant (SPKT) recipients and 41 patients wait-listed for SPKT recruited to the UK Access to Transplantation and Transplant Outcome Measures (ATTOM) programme. Wait-listed patients transplanted within 12 months of recruitment (n = 22) were followed 12 months post-transplant and compared with those still wait-listed (n = 19) to examine pre- to post-transplant changes. Qualitative interviews with ten SPKT recipients 12 months post-transplant were analysed thematically.

Inequity in Access to Transplantation in the United Kingdom.

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 (=2676) and listing within 2 years of starting dialysis (=1970) by center.

Visual hallucinations in neurological and ophthalmological disease: pathophysiology and management.

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.

Patient-reported reasons for delay in diagnosis of age-related macular degeneration: a national survey.

Objectives: To 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 Analysis: A retrospective, cross-sectional survey design. Postal surveys were sent to 4000 members of the UK Macular Society.

Recipient Comorbidity and Survival Outcomes After Kidney Transplantation: A UK-wide Prospective Cohort Study.

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.

Psychometric validation of three new condition-specific questionnaires to assess quality of life, symptoms and treatment satisfaction of patients with aortic aneurysm.

Background: To 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).

Results: The 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.

Design and development of the Hypoglycaemia Symptom Rating Questionnaire (HypoSRQ).

Aims: To evaluate the Hypoglycaemia Symptom Rating Questionnaire (HypoSRQ©) and relationships between self-reported hypoglycaemia and hypoglycaemia measured using blinded continuous glucose monitoring (CGM).

Methods: Diabetes outpatients (n = 113) recruited from Ashford and St. Peter's Hospital completed the HypoSRQ (recent weeks version) and provided clinical information.

Limited health literacy is associated with reduced access to kidney transplantation.

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.

How Widely are Supportive and Flexible Food Service Systems and Mealtime Interventions Used for People in Residential Care Facilities? A Comparison of Dementia-Specific and Nonspecific Facilities.

While improved mealtime practices can reduce agitation, improve quality of life, and increase food intake for people in aged care, the degree of implementation of these strategies is unknown. This study describes food service practices in residential aged care facilities, focusing on units caring for people with dementia. An online survey was distributed to residential aged care facilities for completion by the food service manager (n = 2057).

Validating injury burden estimates using population birth cohorts and longitudinal cohort studies of injury outcomes: the VIBES-Junior study protocol.

Introduction: Traumatic injury is a leading contributor to the global disease burden in children and adolescents, but methods used to estimate burden do not account for differences in patterns of injury and recovery between children and adults. A lack of empirical data on postinjury disability in children has limited capacity to derive valid disability weights and describe the long-term individual and societal impacts of injury in the early part of life. The aim of this study is to establish valid estimates of the burden of non-fatal injury in children and adolescents.