Improving Clinical Care for Children With CKD: A Report From a National Kidney Foundation Scientific Workshop.

Development of clinical guidelines and recommendations to address the care of pediatric patients with chronic kidney disease (CKD) has rarely included the perspectives of providers from a variety of health care disciplines or the patients and parents themselves. Accordingly, the National Kidney Foundation hosted an in-person, one and a half-day workshop that convened a multidisciplinary group of physicians, allied health care professionals, and pediatric patients with CKD and their parents, with the goal of developing key clinical recommendations regarding best practices for the clinical management of pediatric patients living with CKD. The key clinical recommendations pertained to 5 broad topics: addressing the needs of patients and parents/caregivers; modifying the progression of CKD; clinical management of CKD-mineral and bone disorder and growth retardation; clinical management of anemia, cardiovascular disease, and hypertension; and transition and transfer of pediatric patients to adult nephrology care. This report describes the recommendations generated by the participants who attended the workshop.

Toward a better understanding of transition from paediatric to adult care in type 1 diabetes: A qualitative study of adolescents.

AIMS: Type 1 diabetes is associated with significant morbidity, with an increasing risk of acute diabetes-related complications in adolescence and emerging adulthood. Purposeful transition from paediatric to adult-oriented care could mitigate this risk but is often lacking. Detailed understanding of the perspectives of adolescents in their final year of paediatric care is essential to inform delivery of transition care programs. METHODS: We conducted semi-structured interviews with adolescents (aged 17 years) with type 1 diabetes at an academic institution from April 2017 to May 2018. Participants were recruited through convenience sampling. Sixty-one interviews were transcribed for analysis. Coding followed the principles of thematic analysis. RESULTS: Thirty-six percent of participants were male, and participants were from diverse socioeconomic backgrounds. We found three overarching themes in our analysis: first, difficulties navigating changing relationships with parents and healthcare teams; second, the need to increase type 1 diabetes self-management and differing comfort levels based on age of diagnosis; and third, perceived responsibilities for transition care preparation (for both the paediatric team and adolescents themselves) focused not only on type 1 diabetes-specific skills but also on healthcare system structures. CONCLUSIONS: Our findings suggest that novel transition programs addressing changing inter-personal relationships, disease-specific self-management (adapted for age of diagnosis), and healthcare system navigation, supported by parents and peers, may be needed to improve transition care for adolescents with type 1 diabetes.

A Randomized Trial of a Multicomponent Intervention to Promote Medication Adherence: The Teen Adherence in Kidney Transplant Effectiveness of Intervention Trial (TAKE-IT).

BACKGROUND: Poor adherence to immunosuppressive medications is a major cause of premature graft loss among children and young adults. Multicomponent interventions have shown promise but have not been fully evaluated. STUDY DESIGN: Unblinded parallel-arm randomized trial to assess the efficacy of a clinic-based adherence-promoting intervention. SETTING & PARTICIPANTS: Prevalent kidney transplant recipients 11 to 24 years of age and 3 or more months posttransplantation at 8 kidney transplantation centers in Canada and the United States (February 2012 to May 2016) were included. INTERVENTION: Adherence was electronically monitored in all participants during a 3-month run-in, followed by a 12-month intervention. Participants assigned to the TAKE-IT intervention could choose to receive text message, e-mail, and/or visual cue dose reminders and met with a coach at 3-month intervals when adherence data from the prior 3 months were reviewed with the participant. "Action-Focused Problem Solving" was used to address adherence barriers selected as important by the participant. Participants assigned to the control group met with coaches at 3-month intervals but received no feedback about adherence data. OUTCOMES: The primary outcomes were electronically measured "taking" adherence (the proportion of prescribed doses of immunosuppressive medications taken) and "timing" adherence (the proportion of doses of immunosuppressive medications taken between 1 hour before and 2 hours after the prescribed time of administration) on each day of observation. Secondary outcomes included the standard deviation of tacrolimus trough concentrations, self-reported adherence, acute rejection, and graft failure. RESULTS: 81 patients were assigned to intervention (median age, 15.5 years; 57% male) and 88 to the control group (median age, 15.8 years; 61% male). Electronic adherence data were available for 64 intervention and 74 control participants. Participants in the intervention group had significantly greater odds of taking prescribed medications (OR, 1.66; 95% CI, 1.15-2.39) and taking medications at or near the prescribed time (OR, 1.74; 95% CI, 1.21-2.50) than controls. LIMITATIONS: Lack of electronic adherence data for some participants may have introduced bias. There was low statistical power for clinical outcomes. CONCLUSIONS: The multicomponent TAKE-IT intervention resulted in significantly better medication adherence than the control condition. Better medication adherence may result in improved graft outcomes, but this will need to be demonstrated in larger studies. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT01356277.

The Transliminal Self: The Ebb and Flow of the Kidney Transplant Experience.

For people with kidney disease, transplantation is considered a better treatment option than dialysis. A kidney transplant does not, however, ensure an illness-free existence. Compared with the wealth of literature produced from a biomedical perspective, there is little qualitative research focused on the young adult transplant experience. This article presents the findings of a phenomenological study exploring young adults' kidney transplant experiences. Using a qualitative phenomenological approach, semidirected interviews were conducted with five people. Analysis of the transcribed interviews revealed that these individuals' kidney transplant experiences were paradoxical in nature: Participants described an existence between sickness and health, self and other, life and death. Consequently, liminality was identified as one of the experience's key elements and used together with the concept of rites of passage in its analysis. To incorporate these experiences, the term transliminal self is proposed.

Development and Evaluation of Acceptance and Commitment Therapy Delivered by Psychologists and Non-Psychologists in an NHS Community Adult Mental Health Service: a Preliminary Analysis.

BACKGROUND: Previous studies have demonstrated that acceptance and commitment therapy (ACT) is effective for depression and may be useful for complex transdiagnostic clients. AIMS: To conduct a preliminary evaluation of whether ACT is feasible and effective when delivered by psychologists and non-psychologists for complex clients in a National Health Service (NHS) community mental health service for adults. METHOD: Staff were trained in ACT and conducted one-to-one therapy with clients. Measures on general mental health, depression, fusion and values were given pre-therapy, post-therapy and at 3-month follow-up. RESULTS: Standardized measures showed significant improvements post-therapy for global mental health, depression, cognitive fusion and values post-treatment. These were partially maintained at follow-up and remained after an intent-to-treat analysis. There were no differences in outcomes between psychologists and non-psychologists. CONCLUSIONS: ACT may be delivered effectively with limited training for complex cases in secondary care, though further research is needed.

Longitudinal relationships between financial difficulties and eating attitudes in undergraduate students.

OBJECTIVE: Previous research has shown a relationship between financial difficulties and poor mental health in students, but there has been no research examining such a relationship for eating attitudes. METHOD: A group of 444 British undergraduate students completed the Index of Financial Stress and the Eating Attitudes Test (26-item version) at up to four time points across a year at university. RESULTS: Higher baseline financial difficulties significantly predicted higher eating attitudes scores at Times 3 and 4 (up to a year), after adjusting for demographic variables and baseline eating attitudes score. Lower family affluence also predicted higher eating attitudes scores at Time 4 (up to a year). A higher eating attitudes score at baseline also significantly predicted greater financial difficulties at Time 2 (3-4 months). When considering these relationships by gender, they were significant for women only. DISCUSSION: Greater financial difficulties and lower family affluence predict a worsening in eating attitudes over time in female students. The relationship appears to be partially bi-directional, with financial difficulties driving poorer eating attitudes in the shorter term.

Vertebral Body Reshaping after Fractures: An Important Index of Recovery in Glucocorticoid-Treated Children.

PURPOSE: In this 6-year study we identified factors associated with spontaneous vertebral body reshaping in glucocorticoid (GC)-treated children with leukemia, rheumatic disorders, and nephrotic syndrome. METHODS: Subjects were 79 children (mean age 7.4 years) who had vertebral fracture (VF) evaluation on lateral spine radiographs at least 1 year after VF detection. VF were graded using the modified Genant semiquantitative method and fracture burden for individuals was quantified using the spinal deformity index (SDI; sum of grades from T4 to L4). RESULTS: Sixty-five children (82.3%) underwent complete vertebral body reshaping (median time from VF detection to complete reshaping 1.3 years by Cox proportional hazard modeling). Of 237 VF, the majority (83.1%) ultimately reshaped, with 87.2% reshaping in the thoracic region vs 70.7% in the lumbar region (P = .004). Cox models showed that (1) every g/m2 increase in GC exposure in the first year after VF detection was associated with a 19% decline in the probability of reshaping; (2) each unit increase in the SDI at the time of VF detection was associated with a 19% decline in the probability of reshaping [hazard ratio (HR) = 0.81; 95% confidence interval (CI) = 0.71, 0.92; P = .001]; (3) each additional VF present at the time of VF detection reduced reshaping by 25% (HR = 0.75; 95% CI = 0.62, 0.90; P = .002); and (4) each higher grade of VF severity decreased reshaping by 65% (HR = 0.35; 95% CI = 0.21, 0.57; P < .001). CONCLUSION: After experiencing a VF, children with higher GC exposure, higher SDI, more severe fractures, or lumbar VF were at increased risk for persistent vertebral deformity.

Assessment of identity and quality of life in diabetic and renal transplant adolescents in comparison to healthy adolescents.

Identity development represents a central task of adolescence. Identity achievement is characterized by a coherent sense of who one is following a period of exploration and can help navigate the challenges of adulthood. This study examined identity within a quality of life (QOL) context in 85 adolescents with a renal transplant or with Type 1 diabetes in comparison to 90 healthy controls. Results revealed significant differences in ideological identity, with patients showing higher levels of diffusion and controls showing higher levels of foreclosure. No differences with respect to interpersonal identity, QOL, perceived control over the QOL domains, and perceived opportunities for growth and development were found. Future research should assess identity and QOL over a longer period of time to determine whether differences between chronically ill and healthy young adults can be detected.

A qualitative exploration of the non-financial costs of cancer care for Aboriginal and Torres Strait Islander Australians.

OBJECTIVE: Knowledge is growing about cancer care and financial costs for Aboriginal and Torres Strait Islander people. However, much remains unknown about the true costs of cancer care, encompassing financial, emotional, and spiritual aspects. We aimed to explore and explain how non-financial costs affect the health-seeking behaviours of these clients. METHODS: Following Indigenous research protocols, this research was led by Aboriginal and Torres Strait Islander researchers and guided by Indigenous Hospital Liaison Officers. In-depth interviews and focus groups were conducted with 29 participants (Aboriginal and Torres Strait Islander cancer clients, their carers, and cancer-care professionals) at two Queensland public hospitals. RESULTS: Four interwoven themes encompass non-financial costs of healthcare: leaving home and family; loss of control during cancer treatment; health of the spirit; social costs. The Aboriginal relational concept of 'being held' is useful in considering client, family, and carer as central to care with the Indigenous Hospital Liaison Officer two-way interpreting between the care and client team. IMPLICATIONS FOR PUBLIC HEALTH: Framing the reasons that clients and carers have difficulty in engaging in treatment as 'costs' enables a focus on how the health system itself is implicated in the disengagement of Aboriginal and Torres Strait Islander clients from treatment.

Qualitative study exploring the perspectives of emerging adults with type 1 diabetes after transfer to adult care from a paediatric diabetes centre in Montreal, Canada.

INTRODUCTION: Among youth living with type 1 diabetes (T1D), the increasing demands to diabetes self-care and medical follow-up during the transition from paediatric to adult care has been associated with greater morbidity and mortality. Inadequate healthcare support for youth during the transition care period could exacerbate psychosocial risks and difficulties that are common during emerging adulthood. The current investigation sought to explore the post-transfer perceptions of emerging adults living with T1D relating to their transition to adult care. RESEARCH DESIGN AND METHODS: Thirty-three emerging adults living with T1D were recruited during paediatric care and contacted for a semistructured interview post-transfer to adult care (16.2±4.2 months post-transfer) in Montreal, Canada. We analysed data using thematic analysis. RESULTS: We identified four key themes: (1) varied perceptions of the transition process from being quick and abrupt with minimal advice or information from paediatric healthcare providers (HCP) to more positive including a greater motivation for self-management and the transition being concurrent with the developmental period; (2) facilitators to the transition process included informational and tangible social support from HCPs and family or friends, a positive relationship with adult HCP and a greater ease in communicating with the adult care clinic or adult HCP; (3) barriers to adequate transition included lack of advice or information from paediatric HCPs, loss of support from HCPs and friends or family, the separation of healthcare services and greater difficulty in making appointments with adult clinic or HCP and (4) participants recommendations for improving the transition included increasing the length and frequency of appointments in adult care, having access to educational information, and better transition preparation from paediatric HCPs. CONCLUSIONS: The experiences and perceptions of emerging adults are invaluable to guide the ongoing development and improvement of transition programmes for childhood-onset chronic illnesses.

Native nephrectomy prior to pediatric kidney transplantation: biological and clinical aspects.

BACKGROUND: Pre-transplant nephrectomy is performed to reduce risks to graft and recipient. The aims of this study were to evaluate (1) indications, surgical approach, and morbidity of native nephrectomy and (2) the effects of kidney removal on clinical and biological parameters. METHODS: This study was designed as a single-center retrospective cohort study in which 49 consecutive patients with uni- or bilateral native nephrectomies were identified from a total of 126 consecutive graft recipients in our pediatric kidney transplantation database between 1992 and 2011. Demographic, clinical, and laboratory details were extracted from charts and electronic records, including operation reports and pre- and post-operative clinic notes. RESULTS: Of the 49 nephrectomized patients, 47% had anomalies of the kidneys and urinary tract, 22% had cystinosis, 12% had focal segmental glomerulosclerosis, and 6% had congenital nephrotic syndrome. Nephrectomy decisions were based on clinical judgment, taking physiological and psychosocial aspects into consideration. Nephrectomy was performed in patients with polyuria (>2.5 ml/kg/h) and/or large proteinuria (>40 mg/m(2)/h), recurrent urinary tract infection or (rarely) hypertension. Urine output decreased from (median) 3.79 to 2.32 ml/kg/h (-34%), and proteinuria from 157 to 100 mg/m(2)/h (-40%) after unilateral nephrectomy (p=0.005). After bilateral nephrectomy, serum albumin, protein and fibrinogen concentrations normalized in 93, 73, and 55% of nephrectomized patients, respectively. Clinically relevant procedure-related complications (peritoneal laceration, hematoma) occurred in five patients. CONCLUSION: In summary, we demonstrate quantitatively that native nephrectomy prior to transplantation improved serum protein levels and anticipated post-transplant fluid intake needs in select children, reducing the risk of graft hypoperfusion and its postulated consequences for graft outcome.

The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival.

Immaturity among individuals transferred from pediatric to adult-oriented care at a young age may leave them vulnerable to higher graft failure risks than in individuals transferred older. We sought to determine the impact of age at transfer on renal allograft failure rates. We evaluated graft failure rates among 440 kidney recipients recorded in the UNOS database (1987-2007), who had been transferred from pediatric to adult care. Transfers were identified using the center codes recorded at yearly data collection. Failure rates for those transferred early (<21 yr old) were compared with rates for those transferred late (≥21 yr old); time-dependent Cox models were used to estimate the additional risk of graft failure associated with early vs. late transfer. The age-standardized failure rate was 12.9 per 100 person-years among those transferred early, and 8.7 per 100 person-years among those transferred late. Compared with individuals the same age who had transferred late, graft failure rates were 58% higher ([95% confidence interval: 7%, 134%], p = 0.02) among those who had transferred early. Younger age at transfer to adult care is associated with higher graft failure rates. Transfer to adult-oriented care at <21 yr of age should be undertaken with caution.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

Cryptogenic organizing pneumonia after rituximab therapy for presumed post-kidney transplant lymphoproliferative disease.

Cryptogenic organizing pneumonia (COP, formerly bronchiolitis obliterans organizing pneumonia) is rare in children. We describe an 11-year-old girl with Epstein-Barr virus (EBV) reactivation/presumed post-transplant lymphoproliferative disease (PTLD) 15 months after undergoing a deceased donor kidney transplantation. Treatment with reduced immunosuppression, ganciclovir, and cytomegalovirus immunoglobulin was complicated by severe graft rejection, prompting therapy with methylprednisolone, anti-thymocyte globulin and four weekly doses of rituximab (total 1500 mg/m(2)). Tacrolimus- and prednisone-based anti-rejection prophylaxis was complemented with low-dose sirolimus. When the lactate dehydrogenase and uric acid levels rose 10 weeks after the first rituximab infusion and bilateral pulmonary nodules were detected by computerized tomography, recurrence of PTLD was suspected. Open lung biopsy of the clinically asymptomatic patient identified the nodules as COP, characterized by abundant CD3(+) T-cells, few B-cells, and the absence of EBV, cytomegalovirus, or adenovirus antigens. With normalization of the peripheral B-cell count, EB viremia reappeared and persisted, despite minimal immunosuppression. Four years later, the patient was diagnosed with classical Hodgkin lymphoma-type PTLD with multiple pulmonary and abdominal nodes. This first report of rituximab-associated, pediatric COP highlights the risk of pulmonary complications after treatment with B-cell depleting agents in solid organ transplant recipients, and the importance of a histopathologic diagnosis and vigilant follow-up of such lesions.

Psychological profile of adolescents with a kidney transplant.

To describe the psychological profile of renal transplant adolescents compared to healthy peers and to adolescents with CKD, three groups of adolescents aged 12-18 yr were selected: TX, CX, and adolescents with CKD. Psychiatric symptoms and disorders were evaluated through direct interviews (K-SADS-PL) and self-report questionnaires (YSR and CBCL). Forty TX (14 LRD and 26 DD transplant recipients), 40 CX and 20 CKD were included. Twelve of 40 (30%) TX, three of 20 (15%) CKD, and three of 40 (7.5%) CX had a history of learning difficulties (p = 0.03). Compared to CX, TX had lower total YSR competencies score (p = 0.028) and lower total CBCL competencies score (p = 0.003). Twenty-six of 40 (65%) TX, 12 of 20 (60%) CKD and 15 of 40 (37.5%) CX (p = 0.038) met DSM-IV diagnostic criteria for lifetime psychiatric disorder, with rates of depressive disorder of 35% among TX and CKD compared to 15.2% among CX (p = 0.043). Eight of 40 (20%) TX had a history of simple phobia. Nine of 40 (22.5%) TX met diagnostic criteria for ADHD as compared to one of 20 (5%) CKD and three of 40 (7.5%) CX. In the TX group, we found no significant differences in educational and psychiatric variables between LRD and DD. In conclusion, we found a high prevalence of psychiatric morbidity (depression, phobia, ADHD), educational impairment and social competence problems in the TX group. CKD scored in between TX and CX on most measures.

Group education for adolescents with type 1 diabetes during transition from paediatric to adult care: study protocol for a multisite, randomised controlled, superiority trial (GET-IT-T1D).

INTRODUCTION: Transition from paediatric to adult care is challenging for adolescents and emerging adults (ages 18 to 30 years) with type 1 diabetes (T1D). This transition is characterised by a deterioration in glycaemic control (haemoglobin A1c (HbA1c)), decreased clinical attendance, poor self-management and increased acute T1D-related complications. However, evidence to guide delivery of transition care is lacking. Given the effectiveness of group education in adult diabetes glycaemic control and improvements in qualitative measures in paediatric diabetes, group education is a potentially feasible and cost-effective alternative for the delivery of transition care. In emerging adults with T1D, we aim to assess the effectiveness of group education visits compared with usual care on HbA1c, T1D-related complications, psychosocial measures and cost-effectiveness after the transfer to adult care. METHODS AND ANALYSIS: In a multisite, assessor-blinded, randomised, two-arm, parallel-group, superiority trial, 212 adolescents with T1D (ages 17 years) are randomised to 12 months group education versus usual T1D care before transfer to adult care. Visits in the active arm consist of group education sessions followed by usual T1D care visits every 3 months. Primary outcome is change in HbA1c measured at 24 months. Secondary outcomes are delays in establishing adult diabetes care, T1D-related hospitalisations and emergency department visits, severe hypoglycaemia, stigma, self-efficacy, diabetes knowledge, transition readiness, diabetes distress, quality of life and cost-effectiveness at 12 and 24 months follow-up. Analysis will be by intention-to-treat. Change in HbA1c will be calculated and compared between arms using differences (95% CI), along with cost-effectiveness analysis. A similar approach will be conducted to examine between-arm differences in secondary outcomes. ETHICS AND DISSEMINATION: The study was approved by McGill University Health Centre Research Ethics Board (GET-IT/MP-37-2019-4434, version 'Final 1.0 from November 2018). Study results will be disseminated through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT03703440.

Balancing organ quality, HLA-matching, and waiting times: impact of a pediatric priority allocation policy for deceased donor kidneys in Quebec.

Deceased donor kidney allocation policy must balance the desire for high-quality organs, good human leukocyte antigen (HLA) matching, and minimal waiting times. We describe a 10-fold reduction in waiting times and an improvement in nonimmunologic indices of organ quality for child recipients after a change in organ allocation policy in Quebec, Canada. The new policy gives first priority to children (<18 yr) irrespective of HLA matching or waiting time. HLA matching after the policy change was predictably much worse. This study highlights the trade-offs that must be considered both in setting allocation policy and in decisions for individual recipients. We also consider potential unintended negative effects of such a policy change.

Improving the transition from pediatric to adult diabetes care: the pediatric care provider's perspective in Quebec, Canada.

OBJECTIVES: The transition from pediatric to adult care is a high-risk period for the emerging adult with diabetes. We aimed to determine adequacy of pediatric transition care structures and explore the pediatric diabetes care provider's perceptions of transition care. RESEARCH DESIGN AND METHODS: In-depth interviews with pediatric diabetes care providers from 12 diabetes centers in Quebec were conducted. We queried alignment with Got Transition's six core elements of healthcare transition, experiences, and barriers to transition care. Interview transcripts were reviewed for themes. RESULTS: Three centers (25%) reported having any elements of formal and structured transition care preparation and planning. When referrals were within center (n=8), pediatric providers perceived that transition was smoother; information sharing relied heavily on verbal communication rather than documented medical summaries. Barriers included lack of adult providers, less flexibility in adult care scheduling, patient struggles with multiple new adult responsibilities, and insufficient understanding by adult providers of these challenges. There was a perception that the quality of pediatric care was better than adult care. Moving out of the pediatric care geographical region appeared to increase risk for poor follow-up. Patient satisfaction and regular follow-up in adult care were thought to be good measures of transition success. Programs that included overlap between pediatric and adult care were perceived as ideal. CONCLUSIONS: Important gaps in transition care practices persist. Efforts should focus on improving education in transition practices for pediatric care providers and establishing formal transition policies and structures at the institutional level.