A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project.

An understanding of the ethical underpinnings of human subjects research that involves some risk to participants without anticipated direct clinical benefit-such as the kidney biopsy procedure as part of the Kidney Precision Medicine Project (KPMP)-requires a critical examination of the risks as well as the diverse set of countervailing potential benefits to participants. This kind of deliberation has been foundational to the development and conduct of the KPMP. Herein, we use illustrative features of this research paradigm to develop a more comprehensive conceptualization of the types of benefits that may be important to research participants, including respecting pluralistic values, supporting the opportunity to act altruistically, and enhancing benefits to a participant's community. This approach may serve as a model to help researchers, ethicists, and regulators to identify opportunities to better respect and support participants in future research that entails some risk to these participants as well as to improve the quality of research for people with kidney disease.

Impact of the COVID-19 pandemic on juvenile idiopathic arthritis presentation and research recruitment: results from the CAPRI registry.

OBJECTIVE: The COVID-19 pandemic has disrupted healthcare delivery and clinical research worldwide, with data from areas most affected demonstrating an impact on rheumatology care. This study aimed to characterize the impact of the pandemic on the initial presentation of JIA and JIA-related research in Canada. METHODS: Data collected from the Canadian Alliance of Pediatric Rheumatology Investigators JIA Registry from the year pre-pandemic (11 March 2019 to 10 March 2020) was compared with data collected during the first year of the pandemic (11 March 2020 to 10 March 2021). Outcomes included time from symptom onset to first assessment, disease severity at presentation and registry recruitment. Proportions and medians were used to describe categorical and continuous variables, respectively. RESULTS: The median time from symptom onset to first assessment was 138 (IQR 64-365) days pre-pandemic vs 146 (IQR 83-359) days during the pandemic. The JIA category frequencies remained overall stable (44% oligoarticular JIA pre-pandemic, 46.8% pandemic), except for systemic JIA (12 cases pre-pandemic, 1 pandemic). Clinical features, disease activity (cJADAS10), disability (CHAQ) and quality of life (JAQQ) scores were similar between the two cohorts. Pre-pandemic, 225 patients were enrolled, compared with 111 in the pandemic year, with the greatest decrease from March to June 2020. CONCLUSIONS: We did not observe the anticipated delay in time to presentation or increased severity at presentation, suggesting that, within Canada, care adapted well to provide support to new patient consults without negative impacts. The COVID-19 pandemic was associated with an initial 50% decrease in registry enrolment but has since improved.

Patient perspectives and involvement in precision medicine research.

The Kidney Precision Medicine Project will advance understanding of chronic kidney disease attributed to diabetes or hypertension and acute kidney injury through a protocol kidney biopsy used for deep phenotyping with state-of-the-art methodology. To guide scientific inquiry toward clinically meaningful benefit, patients are equal partners for priority setting, study design and conduct, and dissemination of findings. Patients from stakeholder organizations, recruitment sites, tissue interrogation sites, and the Central Hub are represented on the Community Engagement Committee. This unique collaboration between patients and scientists has set a new standard for inclusion in precision medicine research.

Risk, trust and patients' strategic choices of healthcare practitioners.

Research on patients' choice of healthcare practitioners has focussed on countries with regulated and controlled healthcare markets. In contrast, low- and middle-income countries have a pluralistic landscape where untrained, unqualified and unlicensed informal healthcare providers (IHPs) provide significant share of services. Using qualitative data from 58 interviews in an Indian village, this paper explores how patients choose between IHPs and qualified practitioners in the public and formal private sectors. The study found that patients' choices were structurally constrained by accessibility and affordability of care and choosing a practitioner from any sector presented some risk. Negotiation and engagement with risks depended on perceived severity of the health condition and trust in practitioners. Patients had low institutional trust in public and formal private sectors, whereas IHPs operated outside any institutional framework. Consequently, people relied on relational or competence-derived interpersonal trust. Care was sought from formal private practitioners for severe issues due to high-competence-based interpersonal trust in them, whereas for other issues IHPs were preferred due to high relationship-based interpersonal trust. The research shows that patients develop a strategic approach to practitioner choice by using trust to negotiate risks, and crucially, in low- and middle-income countries IHPs bridge a gap by providing accessible and affordable care imbued with relational-interpersonal trust.

The development of the trunk neural crest in the turtle Trachemys scripta.

BACKGROUND: The neural crest is a group of multipotent cells that give rise to a wide variety of cells, especially portion of the peripheral nervous system. Neural crest cells (NCCs) show evolutionary conserved fate restrictions based on their axial level of origin: cranial, vagal, trunk, and sacral. While much is known about these cells in mammals, birds, amphibians, and fish, relatively little is known in other types of amniotes such as snakes, lizards, and turtles. We attempt here to provide a more detailed description of the early phase of trunk neural crest cell (tNCC) development in turtle embryos. RESULTS: In this study, we show, for the first time, migrating tNCC in the pharyngula embryo of Trachemys scripta by vital-labeling the NCC with DiI and through immunofluorescence. We found that (a) tNCC form a line along the sides of the trunk NT; (b) The presence of late migrating tNCC on the medial portion of the somite; (c) The presence of lateral mesodermal migrating tNCC in pharyngula embryos; (d) That turtle embryos have large/thick peripheral nerves. CONCLUSIONS: The similarities and differences in tNCC migration and early PNS development that we observe across sauropsids (birds, snake, gecko, and turtle) suggests that these species evolved some distinct NCC pathways.

Assessment and Transplantation of Orphan Donor Livers: A Back-to-Base Approach to Normothermic Machine Perfusion.

Globally, a large proportion of donor livers are discarded due to concerns over inadequate organ quality. Normothermic machine perfusion (NMP) allows for hepatocellular and biliary viability assessment prior to transplantation and might therefore enable the safe use of these orphan donor livers. We describe here the first Australasian experience of NMP-preserved liver transplants using a 'back-to-base' approach, where NMP was commenced at the recipient hospital following initial static cold storage. In the preclinical phase, 10 human donor livers declined for transplantation (7 from donation after circulatory death [DCD] and 3 from donation after brain death [DBD]) were perfused using a custom-made NMP setup. Subsequently, 10 orphan donor livers (5 from DCD and 5 from DBD) underwent NMP and viability assessment on the OrganOx metra device (OrganOx Limited, Oxford, United Kingdom). Both hepatocellular and biliary viability criteria were used. The median donor risk index was 1.53 (1.16-1.71), and the median recipient Model for End-Stage Liver Disease score was 17 (11-21). In the preclinical phase, 'back-to-base' NMP was deemed suitable and feasible. In the clinical phase, each graft met predefined criteria for implantation during NMP and was subsequently transplanted. Five (50%) recipients developed early allograft dysfunction based on peak aspartate aminotransferase. To date, all grafts function satisfactorily, and none of the 5 recipients who received a DCD liver have developed cholangiopathy. The OrganOx metra using a back-to-base approach has enabled the safe use of 10 high-risk orphan donor livers with 100% 6-month patient and graft survival. NMP improved surgeon confidence to use orphan donor livers and has enabled a safe expansion of the donor pool.

Cognitive outcomes in children and adolescents born very preterm: a meta-analysis.

AIM: To estimate the association between very preterm birth (<32wks' gestation) and intelligence, executive functioning, and processing speed throughout childhood and adolescence, and to examine the effects of gestational age, birthweight, and age at assessment. METHOD: Studies were included if children were born at earlier than 32 weeks' gestation, aged 4 to 17 years, had an age-matched term control group, and if the studies used standardized measures, were published in an English-language peer-reviewed journal, and placed no restrictions on participants based on task performance. RESULTS: We evaluated 6163 children born very preterm and 5471 term-born controls from 60 studies. Children born very preterm scored 0.82 SDs (95% confidence interval [CI] 0.74-0.90; p<0.001) lower on intelligence tests, 0.51 SDs (95% CI 0.44-0.58; p<0.001) lower on measures of executive functioning, and 0.49 SDs (95% CI 0.39-0.60; p<0.001) lower on measures of processing speed than term-born controls. Gestational age and birthweight were associated with study effect size in intelligence and executive functioning of younger children only. Age at assessment was not associated with study effect size. INTERPRETATION: Children born very preterm have medium to large deficits in these cognitive domains. WHAT THIS PAPER ADDS: This meta-analysis is centred on very preterm birth and three cognitive domains. The three critical cognitive domains are intelligence, executive functioning, and processing speed.

Survival and neurodevelopmental outcomes in extremely preterm infants 22-24 weeks of gestation born in Western Australia.

AIM: The management of births at borderline viability continues to present dilemmas for health professionals and parents. The aim of the study was to review local outcomes of infants born between 22 and 24 weeks of gestation between 2004 and 2010 in Western Australia (WA) to aid perinatal counselling. METHODS: Survival data for the study were sourced retrospectively from the Neonatal Clinical Care Unit and Department of Health records of births in WA. Neurodevelopmental follow-up outcomes were assessed using the most recent standardised assessment (Griffiths, Bayley-III and Wechsler Preschool and Primary Scale of Intelligence, 3rd Ed) and medical examination of infants/children 12 months to 8 years from follow-up clinic appointments. RESULTS: At these gestations, 159 survivors represented 72% of neonatal intensive care unit admissions, 53% of WA live births and 26% of WA live and still births; 5% of live births survived at 22 weeks, 46% at 23 weeks and 77% at 24 weeks. Of the 14 outborn/retrieved infants, 4 survived (29%). At a median age of 59 months, disabilities were severe in 13% of children (22-23w = 19%; 24w = 11%). The median test quotient was 90. Moderate and severe cognitive disability was found in 16%, cerebral palsy was found in 7% (n = 11), and 55% of children were free from impairment as defined in this study. CONCLUSION: At these gestations, survival figures varied markedly with the chosen population denominator. Regional data are essential for valid population comparison. While many developmental difficulties occurred in these children, 78% were free from moderate or severe impairment at ages 3-5 years.

Low-Dose Lipopolysaccharide Causes Biliary Injury by Blood Biliary Barrier Impairment in a Rat Hepatic Ischemia/Reperfusion Model.

This study explored whether bacterial endotoxins, in the form of lipopolysaccharides (LPS), could have an injurious effect on the biliary tract in conjunction with ischemia. A total of 64 rats were randomly assigned to 4 groups: sham operation (sham group), 1 mg/kg LPS intraperitoneal (LPS group), hepatic ischemia/reperfusion (IR; IR group), and IR combined with LPS (IR+LPS group). Following 1 or 6 hours of reperfusion, serum liver tests, bile duct histology, immunofluorescence microscopy (zonula occludens-1 [ZO-1]), bile composition (bile salts, phospholipids, lactate dehydrogenase), hepatic gene expression (bile salt transporters and inflammatory mediators), as well as serum and biliary cytokine concentrations were quantified and compared between the study groups. In addition, the integrity of the blood biliary barrier (BBB) was assayed in vivo using horseradish peroxidase (HRP). LPS administration induced severe small bile duct injury following 6 hours of reperfusion. Furthermore, total bile salts and bilirubin concentrations in serum were increased in the LPS groups compared with sham controls (LPS, + 3.3-fold and +1.9-fold; IR+LPS, + 3.8-fold and +1.7-fold, respectively). The BBB was impaired in the LPS groups as evidenced by elevated levels of HRP in bile (+4.9-fold), and decreased expression of claudin 1 (-6.7-fold) and claudin 3 (-3.6-fold). LPS was found to be a potent inducer of small bile duct injury following hepatic ischemia and 6 hours of reperfusion. This injury was associated with increased permeability of the BBB and impaired hepatic bile salt clearance. Liver Transplantation 23 194-206 2017 AASLD.

Informing climate models with rapid chamber measurements of forest carbon uptake.

Models predicting ecosystem carbon dioxide (CO2 ) exchange under future climate change rely on relatively few real-world tests of their assumptions and outputs. Here, we demonstrate a rapid and cost-effective method to estimate CO2 exchange from intact vegetation patches under varying atmospheric CO2 concentrations. We find that net ecosystem CO2 uptake (NEE) in a boreal forest rose linearly by 4.7 ± 0.2% of the current ambient rate for every 10 ppm CO2 increase, with no detectable influence of foliar biomass, season, or nitrogen (N) fertilization. The lack of any clear short-term NEE response to fertilization in such an N-limited system is inconsistent with the instantaneous downregulation of photosynthesis formalized in many global models. Incorporating an alternative mechanism with considerable empirical support - diversion of excess carbon to storage compounds - into an existing earth system model brings the model output into closer agreement with our field measurements. A global simulation incorporating this modified model reduces a long-standing mismatch between the modeled and observed seasonal amplitude of atmospheric CO2 . Wider application of this chamber approach would provide critical data needed to further improve modeled projections of biosphere-atmosphere CO2 exchange in a changing climate.

Getting off on the wrong foot? How community groups in Zimbabwe position themselves for partnerships with external agencies in the HIV response.

BACKGROUND: Partnerships are core to global public health responses. The HIV field embraces partnership working, with growing attention given to the benefits of involving community groups in the HIV response. However, little has been done to unpack the social psychological foundation of partnership working between well-resourced organisations and community groups, and how community representations of partnerships and power asymmetries shape the formation of partnerships for global health. We draw on a psychosocial theory of partnerships to examine community group members' understanding of self and other as they position themselves for partnerships with non-governmental organisations. METHODS: This mixed qualitative methods study was conducted in the Matobo district of Matabeleland South province in Zimbabwe. The study draws on the perspectives of 90 community group members (29 men and 61 women) who participated in a total of 19 individual in-depth interviews and 9 focus group discussions (n = 71). The participants represented an array of different community groups and different levels of experience of working with NGOs. Verbatim transcripts were imported into Atlas.Ti for thematic indexing and analysis. RESULTS: Group members felt they played a central role in the HIV response. Accepting there is a limit to what they can do in isolation, they actively sought to position themselves as potential partners for NGOs. Partnerships with NGOs were said to enable community groups to respond more effectively as well as boost their motivation and morale. However, group members were also acutely aware of how they should act and perform if they were to qualify for a partnership. They spoke about how they had to adopt various strategies to become attractive partners and 'supportable' - including being active and obedient. CONCLUSIONS: Many community groups in Zimbabwe recognise their role in the HIV response and actively navigate representational systems of self and other to showcase themselves as capable actors. While this commitment is admirable, the dynamics that govern this process reflect knowledge encounters and power asymmetries that are conditioned by the aid architecture, undermining aspiring efforts for more equitable partnerships from the get-go.

Family intervention in a prison environment: A systematic literature review.

BACKGROUND: The prison population in England and Wales is approximately 85,000, and elevated rates of mental health difficulties have been reported among the prisoners. Despite frequent recommendations for family interventions to optimise prisoner outcomes, the evidence for its use and impact in prison remain unclear. AIM: The aim of the study is to conduct a systematic review of published literature on family interventions in prisons. METHODS: Embase, PsychINFO and Medline were searched using terms for family interventions and for prisoners or young offenders. No limit was imposed on study design, but, for inclusion, we required that papers were written in English and published in peer-reviewed journals. RESULTS: Nine hundred eighty-three titles were retrieved. Twenty-two met criteria for inclusion. Three were case studies, 12 were descriptive, 6 were quasi-experimental and one was a randomised controlled trial. Interventions and study methods were too heterogeneous for meta-analysis. All studies gave positive conclusions about family interventions, but empirical data on effectiveness were slight. CONCLUSIONS: Consistency in findings across the wide-ranging studies suggested that family therapies may indeed be helpful for prisoners and their families, so further research is warranted. The fact that a randomised controlled trial proved feasible should encourage researchers to seek more robust data and to determine which form of intervention is effective and in which circumstances. It would also be useful to develop an improved understanding of mechanisms of change. Copyright © 2016 John Wiley & Sons, Ltd.

Genetic associations with valvular calcification and aortic stenosis.

BACKGROUND: Limited information is available regarding genetic contributions to valvular calcification, which is an important precursor of clinical valve disease. METHODS: We determined genomewide associations with the presence of aortic-valve calcification (among 6942 participants) and mitral annular calcification (among 3795 participants), as detected by computed tomographic (CT) scanning; the study population for this analysis included persons of white European ancestry from three cohorts participating in the Cohorts for Heart and Aging Research in Genomic Epidemiology consortium (discovery population). Findings were replicated in independent cohorts of persons with either CT-detected valvular calcification or clinical aortic stenosis. RESULTS: One SNP in the lipoprotein(a) (LPA) locus (rs10455872) reached genomewide significance for the presence of aortic-valve calcification (odds ratio per allele, 2.05; P=9.0×10(-10)), a finding that was replicated in additional white European, African-American, and Hispanic-American cohorts (P<0.05 for all comparisons). Genetically determined Lp(a) levels, as predicted by LPA genotype, were also associated with aortic-valve calcification, supporting a causal role for Lp(a). In prospective analyses, LPA genotype was associated with incident aortic stenosis (hazard ratio per allele, 1.68; 95% confidence interval [CI], 1.32 to 2.15) and aortic-valve replacement (hazard ratio, 1.54; 95% CI, 1.05 to 2.27) in a large Swedish cohort; the association with incident aortic stenosis was also replicated in an independent Danish cohort. Two SNPs (rs17659543 and rs13415097) near the proinflammatory gene IL1F9 achieved genomewide significance for mitral annular calcification (P=1.5×10(-8) and P=1.8×10(-8), respectively), but the findings were not replicated consistently. CONCLUSIONS: Genetic variation in the LPA locus, mediated by Lp(a) levels, is associated with aortic-valve calcification across multiple ethnic groups and with incident clinical aortic stenosis. (Funded by the National Heart, Lung, and Blood Institute and others.).

Poor executive functioning in children born very preterm: Using dual-task methodology to untangle alternative theoretical interpretations.

Two alternative theoretical explanations have been proposed for the difficulties with executive functioning observed in children born very preterm (VP; ⩽32 weeks): a general vulnerability (i.e., in attentional and processing capacities), which has a cascading impact on increasingly complex cognitive functions, and a selective vulnerability in executive-level cognitive processes. It is difficult to tease apart this important theoretical distinction because executive functioning tasks are, by default, complex tasks. In the current study, an experimental dual-task design was employed to control for differences in task difficulty in order to isolate executive control. Participants included 50 VP children (mean age=7.29 years) and 39 term peer controls (mean age=7.28 years). The VP group exhibited a greater dual-task cost relative to controls despite experimental control for individual differences in baseline ability on the component single tasks. This group difference also remained under a condition of reduced task difficulty. These results suggest a selective vulnerability in executive-level processes that can be separated from any general vulnerability.

Treating Multiple Incident Post-Traumatic Stress Disorder (PTSD) in an Inner City London Prison: The Need for an Evidence Base.

BACKGROUND: Mental health problems have been found to be more prevalent in prison populations, and higher rates of post-traumatic stress disorder (PTSD) have been found in sentenced populations compared to the general population. Evidence-based treatment in the general population however has not been transferred and empirically supported into the prison system. AIMS: The aim of this manuscript is to illustrate how trauma focused work can be applied in a prison setting. METHOD: This report describes a two-phased approach to treating PTSD, starting with stabilization, followed by an integration of culturally appropriate ideas from narrative exposure therapy (NET), given that the traumas were during war and conflict, and trauma-focused cognitive behavioural therapy (TF-CBT). RESULTS: PTSD and scores on paranoia scales improved between start and end of treatment; these improvements were maintained at a 6-month follow-up. CONCLUSION: This case report 1 illustrates successful treatment of multiple incident PTSD in a prison setting using adaptations to TF-CBT during a window of opportunity when individuals are more likely to be free from substances and live in relative stability. Current service provision and evidence-based practice for PTSD is urgently required in UK prisons to allow individuals to engage in opportunities to reduce re-offending, free from mental health symptoms.

Do serrated neoplasms of the small intestine represent a distinct entity? Pathological findings and molecular alterations in a series of 13 cases.

AIMS: To characterize pathological, immunohistochemical and molecular features of small intestinal serrated neoplasms. METHODS AND RESULTS: We report 13 serrated neoplasms located predominantly in the duodenum (median age, 71 years; male to female ratio, 7:6). The serrated adenomas demonstrated prominent serration, ectopic crypt formations and cytological features reminiscent of colorectal traditional serrated adenomas. Almost half the serrated adenomas demonstrated high-grade dysplasia or were associated with an adenocarcinoma. Immunohistochemical and molecular analysis showed an intestinal (CDX2-positive) phenotype in all tumours, abnormal ß-catenin staining in three cases (23%), abnormal p53 expression in four cases (31%), focal loss of MGMT expression in one case (8%), KRAS mutation in five cases (38%) and CpG island methylator phenotype in six cases (50%). A diffuse pattern of Ki67 expression was present in eight adenomas (62%) and was associated with high-grade dysplasia (P = 0.02). No BRAF(V600E) mutation or loss of MLH1 expression was observed. CONCLUSIONS: To our knowledge, this is the first series reporting serrated adenoma in the small intestine, a rare subtype of adenomas resembling traditional serrated adenoma with aggressive morphological features. The absence of the BRAF(V600E) mutation does not support a role for the serrated neoplasia pathway in the development of these lesions, as in colorectal serrated polyps.

Lack of efficacy of mTOR inhibitors and ACE pathway inhibitors as antifibrotic agents in evolving and established fibrosis in Mdr2⁻/⁻ mice.

BACKGROUND & AIMS: Mammalian target of rapamycin and angiotensin-converting enzyme inhibition has been shown to have antifibrotic activity in models of liver fibrosis. The aim of our study was to determine the efficacy of rapamycin, everolimus, irbesartan and captopril, alone and in combination, as antifibrotic agents in the Mdr2(-/-) model of cholestasis both in early injury and established disease. METHODS: Mdr2(-/-) mice were treated for 4 weeks with vehicle, rapamycin (1 mg/kg) or everolimus (5 mg/kg) every second day or with captopril (30 mg/kg/day), irbesartan (10 mg/kg/day) or vehicle. Further groups of 3-week-old Mdr2(-/-) mice were treated with rapamycin and irbesartan in combination (1 mg/kg/day and 10 mg/kg/day) or with rapamycin (2 mg/kg/day) for 4 weeks. Liver injury and fibrosis were compared between treated and untreated animals. RESULTS: There were no significant improvements in liver injury, histology, hepatic hydroxyproline or profibrogenic gene expression following treatment with rapamycin, everolimus, captopril or irbesartan at any time point studied. Likewise, there were no improvements in liver histology or profibrogenic gene expression following combination therapy or high-dose rapamycin treatment. CONCLUSIONS: The antifibrotic effects of rapamycin, everolimus, captopril and irbesartan seen in other models of fibrosis were not replicated in the Mdr2(-/-) model in this study. This highlights the clear need to test specific antifibrotic agents in a number of different animal models. We believe this animal model is ideal to study usefulness of antifibrotic agents in cholestatic liver disease because of the similarity in genetics and hepatic histopathology to human cholestatic liver disease.

It's harder for boys? Children's representations of their HIV/AIDS-affected peers in Zimbabwe.

This study examines whether children in rural Zimbabwe have differing representations of their HIV/AIDS-affected peers based on the gender of those peers. A group of 128 children (58 boys, 70 girls) aged 10-14 participated in a draw-and-write exercise, in which they were asked to tell the story of either an HIV/AIDS-affected girl child, or an HIV/AIDS-affected boy child. Stories were inductively thematically coded, and then a post hoc statistical analysis was conducted to see if there were differences in the themes that emerged in stories about girls versus stories about boys. The results showed that boys were more often depicted as materially deprived, without adult and teacher support, and heavily burdened with household duties. Further research is needed to determine whether the perceptions of the children in this study point to a series of overlooked challenges facing HIV/AIDS-affected boys, or to a culture of gender inequality facing HIV/AIDS-affected girls - which pays more attention to male suffering than to female suffering.

A good patient? How notions of 'a good patient' affect patient-nurse relationships and ART adherence in Zimbabwe.

BACKGROUND: While patient-provider interactions are commonly understood as mutually constructed relationships, the role of patient behaviour, participation in interactions, and characteristics, particularly ideals surrounding notions of 'good' and 'bad' patients, are under-examined. This article examines social representations of 'a good patient' and how these representations affect patient-healthcare provider relationships and antiretroviral treatment (ART) for people living with HIV. METHODS: Using thematic network analysis, we examined interview and focus group transcripts involving 25 healthcare staff, 48 ART users, and 31 carers of HIV positive children, as well as field notes from over 100 h of ethnographic observation at health centres in rural Zimbabwe. RESULTS: Characteristics of a good patient include obedience, patience, politeness, listening, enthusiasm for treatment, intelligence, physical cleanliness, honesty, gratitude and lifestyle adaptations (taking pills correctly and coming to the clinic when told). As healthcare workers may decide to punish patients who do not live up the 'good patient persona', many patients seek to perform within the confines of the 'good patient persona' to access good care and ensure continued access to ART. DISCUSSION: The notion of a 'good ART patient' can have positive effects on patient health outcomes. It is one of the only arenas of the clinic experience that ART patients can influence in their favour. However, for people not conforming to the norms of the 'good patient persona', the productive and health-enabling patient-nurse relationship may break down and be detrimental to the patient. CONCLUSION: We conclude that policy makers need to take heed of the social representations that govern patient-nurse relationships and their role in facilitating or undermining ART adherence.