ArticleJournal of genetic counseling2018
Identifying Symptoms of Distress in Youth Living with Neurofibromatosis Type 1 (NF1).
Article in Journal of genetic counseling, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 27 citations in OpenAlex.
- Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review.Orphanet journal of rare diseases · 2023Pooled it
- Building a framework for adolescent and young adult transition of care for patients with neurofibromatosis type 1 and neurofibromatosis type 2-related schwannomatosis syndromes.Frontiers in oncology · 2026Review
- Article
- Molecular insights into genodermatoses: Genetic findings from 43 patients.Archives of dermatological research · 2025Article
- Beyond presence of symptoms: Self-reported psychosocial distress interference among outpatient youth with cancer and other life-limiting conditions.Pediatric blood & cancer · 2024Article
- Article
- Burden Among Caregivers of Pediatric Patients with Neurofibromatosis Type 1 (NF1) and Plexiform Neurofibroma (PN) in the United States: A Cross-Sectional Study.Neurology and therapy · 2022Article
- Documentation of Psychosocial Distress and Its Antecedents in Children with Rare or Life-Limiting Chronic Conditions.Children (Basel, Switzerland) · 2022Article
- Using formative evaluation to plan for electronic psychosocial screening in pediatric oncology.Psycho-oncology · 2021Article
- The TAND checklist: a useful screening tool in children with tuberous sclerosis and neurofibromatosis type 1.Orphanet journal of rare diseases · 2020Article
- Primary and Secondary Prevention of Youth Suicide.Pediatrics · 2020Article
- Comparing Parent and Child Self-report Measures of the State-Trait Anxiety Inventory in Children and Adolescents with a Chronic Health Condition.Journal of clinical psychology in medical settings · 2020Article
- Neurofibromatosis Type 1 with Massive Ventricular Polyposis: First Report in the Medical Literature.Open access Macedonian journal of medical sciences · 2018Article
- The Patients' Experiences of Burden of Neurofibromatosis: A Qualitative Study.Iranian journal of nursing and midwifery researchArticle
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 2 countries.
Funding
Abstract
Children and adolescents with Neurofibromatosis type 1 (NF1) are at increased risk for wide-ranging behavioral, developmental, and cognitive impairments and decreased quality of life. To date, no psychosocial screening tool has been developed to quickly assess the symptoms that 1) can be addressed during routine medical appointments in children with NF1, 2) can produce interpretable and actionable results, 3) can be integrated into medical care, and 4) can quickly identify patients at risk in order to better address that the provision of appropriate care are available. This study was conducted to test the overall usability of the Distress Thermometer (DT) and symptom checklist and concordance of DT ratings between pediatric patients, their caregivers and medical providers. Eighty youth (ages 7-21) living with NF1 completed the DT and an accompanying checklist. The findings of this study suggest the DT and symptom checklist was acceptable and feasible to complete in a clinic setting. A small subset reported high distress that required further assessment and intervention. Significant discordance between distress ratings of caregivers and children and healthcare providers was also found. Overall, the DT and accompanying symptom checklist provide important information to identify the presence of distress and contextualize the child's distress but is limited by not assessing whether these symptoms interfere with the child's daily life.
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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.