Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community.

BACKGROUND: Self-management of chronic kidney disease (CKD) is one of the keys in improving CKD outcomes and quality of life. There has been an increased use of online health communities to share the experiences of those living with CKD. By analyzing the CKD online forum data, this study aims to: 1) understand the experiences and challenges of individuals living with CKD, and 2) explore how online communities may help CKD patients in improving CKD self-management. METHODS: Publicly available posts of peer interactions on the National Kidney Foundation's online community for individuals affected by CKD were extracted in April 2021 using computer programming. A total of 20,436 posts were collected, of which 400 posts were analyzed using inductive thematic analysis, and saturation was reached. Two researchers coded each post independently, and discrepancies were discussed to reach consensus. RESULTS: The analysis identified seven themes: 1) Dynamics of CKD status, 2) CKD comorbidities, 3) Managing CKD and symptoms, 4) Life participation and outlook; 5) Navigating healthcare and clinical needs, 6) Medical tests and results; and 7) Support on the forum. The results revealed that comorbidities were common in CKD patients and early-stage CKD was not communicated in a timely manner to patients by the health care community; living with CKD challenged both CKD and caregivers; some common challenges included but were not limited to the management of a diet for CKD and co-morbidities (especially co-morbid diabetes), CKD dynamics and symptoms, and fear of/ways to prevent progression. Individuals living with CKD primarily used the online forum to share and seek information and emotional support for managing CKD (including co-morbidities). CONCLUSIONS: Challenges of living with CKD were found not only in those with advanced kidney disease and those on dialysis, but also in those with early and middle stages. Information and emotional support from the online forum serve as a platform to empower CKD individuals with the knowledge, skills and confidence for CKD self-management. Proactive and innovative strategies with a combination of virtual and real settings to improve self-management for individuals with all-stage CKD needs to be explored and tailored.

Consensus on the standard terminology used in the nutrition care of adult patients with chronic kidney disease / Consenso sobre a terminologia padronizada do processo de cuidado em nutrição para pacientes adultos com doença renal crônica

Abstract This nutrition consensus document is the first to coordinate the efforts of three professional organizations - the Brazilian Association of Nutrition (Asbran), the Brazilian Society of Nephrology (SBN), and the Brazilian Society of Parenteral and Enteral Nutrition (Braspen/SBNPE) - to select terminology and international standardized tools used in nutrition care. Its purpose is to improve the training delivered to nutritionists working with adult patients with chronic kidney disease (CKD). Eleven questions were developed concerning patient screening, care, and nutrition outcome management. The recommendations set out in this document were developed based on international guidelines and papers published in electronic databases such as PubMed, EMBASE(tm), CINHAL, Web of Science, and Cochrane. From a list of internationally standardized terms, twenty nutritionists selected the ones they deemed relevant in clinical practice involving outpatients with CKD. The content validity index (CVI) was calculated with 80% agreement in the answers. The Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework was used to assess the strength of evidence and recommendations. A total of 107 terms related to Nutrition Assessment and Reassessment, 28 to Diagnosis, nine to Intervention, and 94 to Monitoring and Evaluation were selected. The list of selected terms and identified tools will be used in the development of training programs and the implementation of standardized nutrition terminology for nutritionists working with patients with chronic kidney disease in Brazil.

Resumo Este consenso representa a primeira colaboração entre três organizações profissionais com foco em nutrição: Associação Brasileira de Nutrição (Asbran), Sociedade Brasileira de Nefrologia (SBN) e Sociedade Brasileira de Nutrição Parenteral e Enteral (Braspen/SBNPE), com o objetivo de identificar a terminologia e instrumentos padronizados internacionalmente para o processo de cuidado em nutrição. O foco é facilitar a condução de treinamentos de nutricionistas que trabalham com pacientes adultos com doenças renais crônicas (DRC). Foram levantadas onze questões relacionadas à triagem, ao processo de cuidado e à gestão de resultados em nutrição. As recomendações foram baseadas em diretrizes internacionais e em bancos de dados eletrônicos, como PubMed, EMBASE(tm), CINHAL, Web of Science e Cochrane. A partir do envio de listas de termos padronizados internacionalmente, vinte nutricionistas especialistas selecionaram aqueles que consideraram muito claros e relevantes para a prática clínica com pacientes ambulatoriais com DRC. Foi calculado o Índice de Validade de Conteúdo (IVC), com 80% de concordância nas respostas. O Grading of Recommendations, Assessment, Development and Evaluation (GRADE) foi usado para atribuir força de evidência às recomendações. Foram selecionados 107 termos de Avaliação e Reavaliação, 28 de Diagnóstico, 9 de Intervenção e 94 de Monitoramento e Aferição em Nutrição. A lista de termos selecionados e identificação de instrumentos auxiliará no planejamento de treinamentos e na implementação de terminologia padronizada em nutrição no Brasil, para nutricionistas que trabalham com pacientes renais crônicos.

Consensus on the standard terminology used in the nutrition care of adult patients with chronic kidney disease.

This nutrition consensus document is the first to coordinate the efforts of three professional organizations - the Brazilian Association of Nutrition (Asbran), the Brazilian Society of Nephrology (SBN), and the Brazilian Society of Parenteral and Enteral Nutrition (Braspen/SBNPE) - to select terminology and international standardized tools used in nutrition care. Its purpose is to improve the training delivered to nutritionists working with adult patients with chronic kidney disease (CKD). Eleven questions were developed concerning patient screening, care, and nutrition outcome management. The recommendations set out in this document were developed based on international guidelines and papers published in electronic databases such as PubMed, EMBASE(tm), CINHAL, Web of Science, and Cochrane. From a list of internationally standardized terms, twenty nutritionists selected the ones they deemed relevant in clinical practice involving outpatients with CKD. The content validity index (CVI) was calculated with 80% agreement in the answers. The Grading of Recommendations, Assessment, Development and Evaluation (GRADE) framework was used to assess the strength of evidence and recommendations. A total of 107 terms related to Nutrition Assessment and Reassessment, 28 to Diagnosis, nine to Intervention, and 94 to Monitoring and Evaluation were selected. The list of selected terms and identified tools will be used in the development of training programs and the implementation of standardized nutrition terminology for nutritionists working with patients with chronic kidney disease in Brazil.

Adiponectin and IGFBP-1 in the development of gestational diabetes in obese mothers.

OBJECTIVE: Gestational diabetes mellitus (GDM) is more common in pregnancies complicated by obesity and both diseases increase the risk for fetal overgrowth and long-term adverse health consequences for the mother and child. Previous studies have linked low maternal serum adiponectin to GDM in normal and overweight women. We hypothesized that lower adiponectin, in particular the high-molecular-weight form, and insulin-like growth factor I (IGF-I) and its binding protein (IGFBP-1) are associated with GDM in pregnant obese Hispanic women. METHODS: 72 obese, predominantly Hispanic (92%), women were recruited at 24-28 weeks of gestation. Adiposity was assessed, fasting serum samples were collected, and glucose, insulin, triglyceride, cholesterol levels, adipokines, and hormones associated with obesity and insulin resistance were measured. 30 women had been recently diagnosed with GDM. RESULTS: Gestational weeks, body mass index, triceps skinfold thickness, mid-arm circumference, serum leptin, IGF-I, tumor necrosis factor α, and interleukin-6 did not differ in the two groups. Obese women with GDM had significantly higher fasting glucose, A1C, triglycerides, very-low-density lipoprotein cholesterol and lower high-density lipoprotein cholesterol, adiponectin, and IGFBP-1 compared to obese women without GDM. Homeostasis model assessment of insulin resistance was positively correlated to IGF-I and negatively correlated to adiponectin. CONCLUSIONS: Obese pregnant women with recently diagnosed GDM had a significantly exacerbated metabolic profile, low serum adiponectin and IGFBP-1 levels at 24-28 weeks of gestation, as compared to women with obesity alone. Because low adiponectin is well established to cause insulin resistance and decreased IGFBP-1 indicates increased IGF-I bioavailability, we propose that these changes are mechanistically linked to the development of GDM in obese Hispanic women.