Factors Affecting Quality of Life in Adolescents Living With Type 2 Diabetes: A Substudy of the Improving Renal Complications in Adolescents With Type 2 Diabetes Through REsearch (iCARE) Cohort.

OBJECTIVES: Type 2 diabetes (T2D) disproportionately impacts adolescents living in challenging socioeconomic conditions. However, the impacts of T2D on quality of life (QOL) in this context are unknown. Our aim in this study was to evaluate QOL and identify its biological, psychological, and social determinants among adolescents living with and without T2D from similar sociodemographic backgrounds. Relationships between glycemic stability, early complications, and treatments of T2D and QOL were also examined. METHODS: Ninety-two adolescents with T2D and 59 at-risk controls were included from the Improving Renal Complications in Adolescents With Type 2 Diabetes Through Research (iCARE) cohort. The main outcome was QOL (Pediatric QOL Inventory [PedsQL]). Biological covariates included age, sex, body mass index z score, glycated hemoglobin, estimated glomerular filtration rate, and urine albumin-to-creatinine ratio. Psychological factors included perceived stress (14-item Perceived Stress Scale) and mental distress (6-item Kessler scale). Social factors included food security (Household Food Security Survey Module) and income quintile. Multivariate linear regression analyses were used to identify factors associated with QOL between adolescents with and without T2D, and within the T2D cohort. RESULTS: Mean total QOL scores among adolescents with T2D were lower than in controls (67.0±14.8 vs 71.7±16.2, p=0.04). Age, sex, and percent Indigenous ethnicity were not significantly different between groups. Mean duration of T2D was 2.3±2.0 years. In the multivariate analysis, QOL was not associated with diabetes status, but negative associations were seen between mental distress (ß=-1.46, p<0.001) and food insecurity QOL (ß=-6.26, p=0.037). No differences were seen between biological factors and QOL in either analysis. CONCLUSIONS: Significant factors associated with decreased QOL in adolescents living with T2D include mental distress and food insecurity, indicating areas for targeted intervention.

Walking in two worlds with type 2 diabetes: a scoping review of prevention and management practices incorporating traditional indigenous approaches.

Type 2 diabetes is a complex chronic disease rapidly increasing among young people and disproportionately impacting Indigenous youth. Treatment programs are often inadequate for this population as they lack cultural relevance. A scoping review was conducted to explore traditional Indigenous approaches for diabetes prevention and management, to inform a program aimed at supporting Indigenous youth and families with type 2 diabetes. We seek to answer the following question: "Which traditional medicines and practices have been incorporated into intervention or prevention strategies for Indigenous people living with diabetes?" Search was done June 2021 using Ovid Medline, ESBCO and ProQuest databases. Terms included wellbeing, intervention, diabetes, and traditional approaches. Of the 2138 titles screened, 34 met inclusion criteria. Three studies integrated traditional Indigenous approaches into Western-based intervention programming. Content included traditional food and nutrition programs, gardening programs, Elder knowledge sharing, story telling, talking circles, feasting, prayer, traditional dancing, hunting, and school-based wellness curricula. Many were wholistic, co-created with community, Indigenous-led and held in accessible community spaces. The heterogeneity in approaches reflects the diversity of Indigenous nations and communities. This review identifies important elements to include in culturally relevant programs to address diabetes-related wellness.

Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).

BACKGROUND: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms. METHODS: This was a prospective observational study of children and caregivers of children with CKD/kidney failure at two Canadian pediatric care centers. Building on previously published patient-reported outcome measures (PROs) for the assessment of symptom burden in other populations, we drafted a 13-item questionnaire. Cognitive interviews were performed with children and caregivers of children with CKD/kidney failure to iteratively refine the questionnaire. RESULTS: Twenty-four participants completed cognitive interviewing (11 children, 13 caregivers). The most common symptoms endorsed were feeling left out, feeling sad/depressed, inability to focus, tiredness, nausea, vomiting, not wanting to eat, and changes in the taste of food. Feeling left out was added to the questionnaire as almost all participants voiced this as a frequent and impactful symptom, resulting in a 14-item questionnaire. CONCLUSIONS: PRO-Kid is the first pediatric CKD/kidney failure-specific PRO tool to assess symptom burden. Future work should validate this tool in a larger cohort so that it may be used to improve the care of children living with CKD/kidney failure. A higher resolution version of the Graphical abstract is available as Supplementary information.

Kidney Check Point-of-Care Testing-Furthering Patient Engagement and Patient-Centered Care in Canada's Rural and Remote Indigenous Communities: Program Report.

PURPOSE OF PROGRAM: Access to health care services remains a significant barrier for many Indigenous people's living in rural and remote regions of Canada. Driven by geographical isolation and compounded by socioeconomic and environmental disparities, individuals living under these circumstances face disproportionately poor health outcomes. Kidney Check is a comprehensive screening, triage, and treatment initiative working to bring culturally safe preventive care to rural and remote Indigenous communities across Manitoba, Ontario, BC, Alberta, and Saskatchewan. The project's patient-oriented approach addresses concerns raised by kidney patients and their caregivers using culturally safe practices. Using the various expertise of their multidisciplinary team, Kidney Check seeks to further collaborative efforts to improve access to preventive health care for these groups. Meaningful engagement with patients, communities, and local health care stakeholders ensures Indigenous voices are heard and incorporated into the project in a way that promotes shared decision-making and sustainability. SOURCES OF INFORMATION: As an affiliate program of the Can-SOLVE CKD Network, Kidney Check's guiding priorities were developed over 3 years of patient consultation and finalized during 2 workshops held with more than 30 patients, caregivers, Indigenous peoples, researchers, and policy makers using a modified Delphi process. Today, patients continue to participate in project development via 2 governing bodies: The Patient Governance Circle and the Indigenous Peoples Engagement and Research Council (IPERC). METHODS: Modeled after the Indigenous-led 2015 FINISHED project in Manitoba, Kidney Check employs point-of-care testing to identify diabetes, hypertension, and chronic kidney disease (CKD) in individuals, ages 10 and above, regardless of pre-existing risk factors. The Kidney Check team consists of 4 working groups: project leadership, provincial management, local community partners, and patient partners. By using and building on existing relationships between local and provincial health care stakeholders and various Indigenous communities, the program furthers collaborative efforts to bridge gaps in health equity. KEY FINDINGS: The Kidney Check program has established an infrastructure that integrates patient engagement at all stages of the program from priority setting to deployment and dissemination strategies. LIMITATIONS: While we encourage and offer screening services to all, many still choose not to attend for a variety of reasons which may introduce selection bias. Kidney Check uses patient engagement as a foundational component of the program; however, there is currently a limited amount of research documenting the benefits of patient engagement in health care settings. More formal qualitative evaluations of these activities are needed. In addition, as the COVID-19 pandemic has halted screening procedures in most communities, we currently do not have quantitative data to support the efficacy of the Kidney Check program. IMPLICATIONS: For many Indigenous people, lack of accessibility to health care services is compounded by sociopolitical barriers that disrupt relationships between patients and providers. Meaningful engagement presents one opportunity to ensure the voices and perspectives of Indigenous patients and communities are incorporated into health services. In addition, this screening paradigm has shown to be cost effective as shown by analyses done on the FINISHED screening program.

OBJECTIFS DU PROGRAMME: L'accès aux services de santé demeure un obstacle important pour de nombreuses populations autochtones vivant dans les régions rurales et éloignées du Canada. En raison de l'isolement géographique et de disparités environnementales et socio-économiques, les personnes vivant dans ces situations sont confrontées à de pauvres conditions de santé. Kidney Check est une initiative complète de dépistage, de triage et de traitement qui vise à offrir des soins préventifs et respectueux de leurs valeurs culturelles aux communautés autochtones rurales et éloignées du Manitoba, de l'Ontario, de la Colombie-Britannique, de l'Alberta et de la Saskatchewan. L'approche axée sur le patient répond aux préoccupations soulevées par les patients atteints de néphropathies et leurs soignants grâce à des pratiques adaptées à leur culture. En exploitant les compétences d'une équipe multidisciplinaire, Kidney Check s'efforce de poursuivre les efforts de collaboration visant l'amélioration de l'accès à des soins de santé préventifs pour ces groupes. Un engagement significatif des patients, des communautés et des acteurs locaux du secteur de la santé garantit que les voix autochtones sont entendues et intégrées dans le projet d'une manière qui favorise la pérennité et la prise de décision partagée. SOURCES: Kidney Check étant un programme affilié du réseau CAN-SOLVE CKD, ses priorités directrices ont été élaborées à partir d'une consultation de 3 ans auprès des patients et finalisées au cours de deux ateliers utilisant une version modifiée de la méthode Delphi et réunissant plus d'une trentaine de patients, soignants, membres des communautés autochtones, chercheurs et décideurs. Les patients continuent à ce jour de participer au développement du projet par l'entremise de deux organes directeurs: le Conseil des patients et le Conseil de la recherche et de l'engagement des peuples autochtones (IPICER). MÉTHODOLOGIE: Inspiré du projet de dépistage FINISHED mené en 2015 auprès des Autochtones du Manitoba, Kidney Check utilise des tests au point de service pour dépister le diabète, l'hypertension et l'insuffisance rénale chronique chez les personnes âgées de 10 ans et plus, quels que soient les facteurs de risque préexistants. L'équipe de Kidney Check se compose de quatre groupes de travail: direction du projet, gestion provinciale, partenaires communautaires locaux et patients partenaires. En utilisant et en s'appuyant sur les relations existantes entre les intervenants locaux et provinciaux du secteur de la santé et les diverses communautés autochtones, le programme favorise les efforts de collaboration pour combler les écarts en matière d'équité en santé. PRINCIPAUX RÉSULTATS: Le programme Kidney Check a mis en place une infrastructure impliquant la participation des patients à toutes les étapes du programme, de l'établissement des priorités aux stratégies de déploiement et de diffusion. LIMITES: Nous encourageons et offrons ces services de dépistage à tous, mais, pour diverses raisons, beaucoup choisissent de ne pas y participer, ce qui peut introduire un biais de sélection. La participation des patients est un élément fondamental du programme Kidney Check; néanmoins, les avantages d'un engagement des patients dans les établissements de soins de santé demeurent peu documentés. Davantage d'évaluations qualitatives formelles de ces activités sont donc nécessaires. De plus, la pandémie de COVID-19 ayant interrompu les procédures de dépistage dans la plupart des collectivités, nous ne disposons pas actuellement de données quantitatives pour soutenir l'efficacité du programme. CONCLUSION: Pour de nombreuses populations autochtones, le manque d'accessibilité aux services de santé est aggravé par des obstacles sociopolitiques qui perturbent les relations entre les patients et les fournisseurs de soins. La participation significative des patients et des communautés autochtones permet d'assurer que leurs voix et perspectives soient intégrées dans les services de santé. En outre, ce paradigme de dépistage s'est révélé rentable, comme le montrent les analyses effectuées sur le programme de dépistage FINISHED.

Evaluation of administrative case definitions for chronic kidney disease in children.

INTRODUCTION: Administrative data is increasingly used for chronic disease surveillance; however, its validity to define cases of chronic kidney disease (CKD) in children is unknown. We sought to evaluate the performance of case definitions for CKD in children. METHODS: We utilized population-based administrative data from the Manitoba Center for Health Policy to evaluate the validity of algorithms based on a combination of hospital claims, outpatient physician visits, and pharmaceutical use over 1-3 years in children <18 years of age. Algorithms were compared with a laboratory-based definition (estimated glomerular filtration rate < 90 ml/min/1.73 m2 and/or presence of proteinuria). RESULTS: All algorithms evaluated had very low sensitivity (0.20-0.39) and moderate positive predictive value (0.52-0.68). Algorithms had excellent specificity (0.98-0.99) and negative predictive value (0.96-0.97). Receiver operating characteristic (ROC) curves indicate fair accuracy (0.60-0.68). Sensitivity improved with increasing years of data. One or more physician claims and one or more prescriptions over 3 years had the highest sensitivity and ROC. CONCLUSIONS: The sensitivity of administrative data algorithms for CKD is unacceptably low for a screening test. Specificity is excellent; therefore, children without CKD are correctly identified. Alternate data sources are required for population-based surveillance of this important chronic disease.

Identifying Important Outcomes for Young People With CKD and Their Caregivers: A Nominal Group Technique Study.

RATIONALE & OBJECTIVE: Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers. STUDY DESIGN: We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. SETTINGS & PARTICIPANTS: Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada. ANALYTICAL APPROACH: Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. RESULTS: 34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations). LIMITATIONS: Only English-speaking participants were recruited. CONCLUSIONS: Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.

Child and Parental Perspectives on Communication and Decision Making in Pediatric CKD: A Focus Group Study.

BACKGROUND & OBJECTIVES: Effective communication and shared decision making improve quality of care and patient outcomes but can be particularly challenging in pediatric chronic disease because children depend on their parents and clinicians to manage complex health care and developmental needs. We aimed to describe the perspectives of children with chronic kidney disease (CKD) and their parents with regard to communication and decision making. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: Children with CKD (n=34) and parents (n=62) from 6 centers across 6 cities in Australia, Canada, and the United States participated in 16 focus groups. ANALYTICAL APPROACH: Transcripts were analyzed thematically. RESULTS: We identified 4 themes: (1) disempowered by knowledge imbalance (unprepared and ill-informed, suspicion of censorship, and inadequacy as technicians), (2) recognizing own expertise (intuition and instinct unique to parental bond, emerging wisdom and confidence, identifying opportunities for control and inclusion, and empowering participation in children), (3) striving to assert own priorities (negotiating broader life impacts, choosing to defer decisional burden, overprotected and overruled, and struggling to voice own preferences), and (4) managing child's involvement (respecting child's expertise, attributing "risky" behaviors to rebellion, and protecting children from illness burden). LIMITATIONS: Only English-speaking participants were recruited, which may limit the transferability of the findings. We collected data from child and parent perspectives; however, clinician perspectives may provide further understanding of the difficulties of communication and decision making in pediatrics. CONCLUSIONS: Parents value partnership with clinicians and consider long-term and quality-of-life implications of their child's illness. Children with CKD want more involvement in treatment decision making but are limited by vulnerability, fear, and uncertainty. There is a need to support the child to better enable him or her to become a partner in decision making and prepare him or her for adulthood. Collaborative and informed decision making that addresses the priorities and concerns of both children and parents is needed.

Screening for chronic kidney disease in Canadian indigenous peoples is cost-effective.

Canadian indigenous (First Nations) have rates of kidney failure that are 2- to 4-fold higher than the non-indigenous general Canadian population. As such, a strategy of targeted screening and treatment for CKD may be cost-effective in this population. Our objective was to assess the cost utility of screening and subsequent treatment for CKD in rural Canadian indigenous adults by both estimated glomerular filtration rate and the urine albumin-to-creatinine ratio. A decision analytic Markov model was constructed comparing the screening and treatment strategy to usual care. Primary outcomes were presented as incremental cost-effectiveness ratios (ICERs) presented as a cost per quality-adjusted life-year (QALY). Screening for CKD was associated with an ICER of $23,700/QALY in comparison to usual care. Restricting the model to screening in communities accessed only by air travel (CKD prevalence 34.4%), this ratio fell to $7,790/QALY. In road accessible communities (CKD prevalence 17.6%) the ICER was $52,480/QALY. The model was robust to changes in influential variables when tested in univariate sensitivity analyses. Probabilistic sensitivity analysis found 72% of simulations to be cost-effective at a $50,000/QALY threshold and 93% of simulations to be cost-effective at a $100,000/QALY threshold. Thus, targeted screening and treatment for CKD using point-of-care testing equipment in rural Canadian indigenous populations is cost-effective, particularly in remote air access-only communities with the highest risk of CKD and kidney failure. Evaluation of targeted screening initiatives with cluster randomized controlled trials and integration of screening into routine clinical visits in communities with the highest risk is recommended.

An assessment of dialysis provider's attitudes towards timing of dialysis initiation in Canada.

BACKGROUND: Physicians' perceptions and opinions may influence when to initiate dialysis. OBJECTIVE: To examine providers' perspectives and opinions regarding the timing of dialysis initiation. DESIGN: Online survey. SETTING: Community and academic dialysis practices in Canada. PARTICIPANTS: A nationally-representative sample of dialysis providers. MEASUREMENTS AND METHODS: Dialysis providers opinions assessing reasons to initiate dialysis at low or high eGFR. Responses were obtained using a 9-point Likert scale. Early dialysis was defined as initiation of dialysis in an individual with an eGFR greater than or equal to 10.5 ml/min/m(2). A detailed survey was emailed to all members of the Canadian Society of Nephrology (CSN) in February 2013. The survey was designed and pre-tested to evaluate duration and ease of administration. RESULTS: One hundred and forty one (25% response rate) physicians participated in the survey. The majority were from urban, academic centres and practiced in regionally administered renal programs. Very few respondents had a formal policy regarding the timing of dialysis initiation or formally reviewed new dialysis starts (N = 4, 3.1%). The majority of respondents were either neutral or disagreed that late compared to early dialysis initiation improved outcomes (85-88%), had a negative impact on quality of life (89%), worsened AVF or PD use (84-90%), led to sicker patients (83%) or was cost effective (61%). Fifty-seven percent of respondents felt uremic symptoms occurred earlier in patients with advancing age or co-morbid illness. Half (51.8%) of the respondents felt there was an absolute eGFR at which they would initiate dialysis in an asymptomatic patient. The majority of respondents would initiate dialysis for classic indications for dialysis, such as volume overload (90.1%) and cachexia (83.7%) however a significant number chose other factors that may lead them to early dialysis initiation including avoiding an emergency (28.4%), patient preference (21.3%) and non-compliance (8.5%). LIMITATIONS: 25% response rate. CONCLUSIONS: Although the majority of nephrologists in Canada who responded followed evidence-based practice regarding the timing of dialysis initiation, knowledge gaps and areas of clinical uncertainty exist. The implementation and evaluation of formal policies and knowledge translation activities may limit potentially unnecessary early dialysis initiation.

CONTEXTE: Les perceptions et opinions des médecins peuvent influencer le moment d'initiation de la dialyse. OBJECTIF: Examiner les perspectives et opinions des médecins relatives au moment d'initiation de la dialyse. TYPE D'ÉTUDE: Sondage en ligne. ÉCHANTILLON: Unités de dialyse communautaires et académiques au Canada. PARTICIPANTS: Un échantillon représentatif de médecins au Canada. MÉTHODES ET INSTRUMENTS DE MESURE: Nous avons recueilli les opinions des professionnels impliqués en dialyse sur l'initiation de la dialyse basée sur le niveau de eDGF (inférieur ou supérieur à 10,5 mL/min/m2) grâce à un sondage envoyé à tous les membres de la Société canadienne de néphrologie en février 2013. Les réponses aux questions étaient exprimées par une échelle de Likert à 9 catégories. Nous avons préalablement testé le sondage afin d'évaluer sa durée et sa facilité d'administration. L'initiation précoce de la dialyse était définie par un début de dialyse en présence d'un eDGF supérieur ou égal à 10,5 mL/min/m2. RÉSULTATS: Cent quarante et un (taux de réponse de 25%) médecins ont participé au sondage. La majorité provenait de centres urbains et académiques et pratiquait dans des programmes régionaux de suppléance rénale. Très peu de répondants avaient un protocole formel pour le début de la dialyse ou avaient révisés les nouvelles initiations de dialyse (n = 4, 3,1%). La majorité des répondants était soit neutre ou en désaccord avec l'affirmation que l'initiation tardive, comparée à l'initiation précoce, améliore les issues (85-88%), réduit l'utilisation d'une FAV ou de la dialyse péritonéale (84-90%), conduit vers des patients plus malades (83%), ou était rentable (61%). Cinquante-sept pour cent des répondants estimaient que les symptômes urémiques apparaissent plus tôt chez les patients âgés ou souffrant de comorbidités. La moitié (51,8%) des répondants estimait qu'il existe un seuil de DFG où ils débuteraient la dialyse chez un patient asymptomatique. La majorité des répondants initierait la dialyse pour les indications classiques de dialyse, telles que la surcharge volémique (90,1%) et la cachexie (83,7%). Cependant, un nombre significatif de répondants ont rapporté d'autres facteurs qui les conduiraient à initier la dialyse précocement, incluant éviter une urgence (28,4%), la préférence du patient (21,3%) et l'inobservance (8,5%). LIMITES DE L'ÉTUDE: Taux de réponse de 25%. CONCLUSIONS: Bien que la majorité des néphrologues au Canada ait répondu selon les lignes directrices basées sur les données probantes pour le moment d'initiation de la dialyse, des lacunes de connaissance et des incertitudes cliniques existent. La mise en œuvre et l'évaluation de politiques formelles et d'activités de valorisation des connaissances pourraient limiter l'initiation de dialyse précoce non nécessaire.