ArticleNephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association2017
Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome.
Article in Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
16 citing papers in PubMed, 3 syntheses or guidelines pooled it, 27 citations in OpenAlex.
- Corticosteroid therapy for nephrotic syndrome in children.The Cochrane database of systematic reviews · 2024Pooled it
- Development of a Conceptual Model for the Patient Experience of Focal Segmental Glomerulosclerosis (FSGS): A Qualitative Targeted Literature Review.Advances in therapy · 2023Pooled it
- Corticosteroid therapy for nephrotic syndrome in children.The Cochrane database of systematic reviews · 2020Pooled it
- Article
- Pediatric contributions and lessons learned from the NEPTUNE cohort study.Pediatric nephrology (Berlin, Germany) · 2024Review
- Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective.Kidney international reports · 2024Article
- Exploring the meaning of life among Chinese adolescents with nephrotic syndrome: determinants and psychological correlates.Frontiers in psychology · 2024Article
- Cyclophosphamide Toxicity in Pediatric Nephrotic Syndrome Patient: A Case Report and Literature Review.Current drug safety · 2024Review
- Perceived family impact and coping mechanisms of caregivers of children with nephrotic syndrome.Pediatric nephrology (Berlin, Germany) · 2023Article
- Provision of renal-specific nutrition knowledge for changing dietary practice in Bangladeshi hemodialysis patients.PEC innovation · 2022Article
- The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers.Canadian journal of kidney health and disease · 2022Article
- A Focus Group Study of Self-Management in Patients With Glomerular Disease.Kidney international reports · 2022Article
- Article
- Persons' Experiences of Suffering from Nephrotic Syndrome.Journal of renal care · 2020Article
- Development of a novel mobile application to detect urine protein for nephrotic syndrome disease monitoring.BMC medical informatics and decision making · 2019Article
- Nephrotic Syndrome: Oedema Formation and Its Treatment With Diuretics.Frontiers in physiology · 2018Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 7 institutions in 2 countries.
Funding
Abstract
Background: People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills and integrate illness into daily life. However, the learning needs of adult patients and parents of children with NS are unknown. We therefore explored patient and parent perspectives on learning needs related to NS as part of a larger study to develop a shared learning tool for NS. Methods: Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25). Results: The complexity of NS and its treatment made decision making challenging, as patients/parents often had to assimilate information about a condition that is poorly understood. Specific informational needs related to understanding the diagnosis and treatment approaches as well as learning to manage NS were identified. Difficulty in getting accurate information often made learning challenging. The importance of learning to monitor their condition, including understanding triggers that might precipitate a relapse, was highlighted, underscoring the need for individualized approaches to ensure unique learning needs are addressed. Conclusions: Our findings reveal some of the unique concerns of people with NS given its uncertain course and the limited information available specific to NS. These results suggest the need for shared communication between the patient/parents and providers to elicit the patient's/parents' understanding of NS and to support them in meeting their unique learning needs.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.