Evidence map›Paper›PMID 35918231›Full record

ArticlePatient education and counseling2022

Family communication challenges of adolescents and young adults with Li-Fraumeni syndrome: Implications for psychosocial care.

Camella J Rising, Catherine Wilsnack, Patrick Boyd, Alix G Sleight, Sadie P Hutson, Payal P Khincha, Allison Werner-Lin

Registry-linked trialOpen access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Patient education and counseling, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01443468 (Clinical, Epidemiologic, and Genetic Studies of Li-Fraumeni Syndrome), which is not on this map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
0.9field-weighted citation impact, top 29% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

NCT01443468 recruitingnot on this map

Clinical, Epidemiologic, and Genetic Studies of Li-Fraumeni Syndrome

TypeobservationalSponsorNational Cancer Institute (NCI)Ran2012Enrolled5,000ConditionsLi-Fraumeni Syndrome, Neoplasms, Tp53 Mutations
3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 12 citations in OpenAlex.

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  7. When the somatic genome informs the germline: the example of TP53.Journal of the National Cancer Institute · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 6 institutions in 1 country.

Camella J RisingClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, USA. Electronic address: camella.rising@nih.gov.
Catherine WilsnackSteve Hicks School of Social Work, University of Texas at Austin, Austin, USA. Electronic address: catherine.wilsnack@nih.gov.
Patrick BoydClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, USA. Electronic address: pat.boyd@nih.gov.
Alix G SleightDepartment of Physical Medicine & Rehabilitation, Cedars-Sinai Medical Center, Los Angeles, USA. Electronic address: alixsleight.warner@cshs.org.
Sadie P HutsonCollege of Nursing, The University of Tennessee, Knoxville, USA. Electronic address: shutson@utk.edu.
Payal P KhinchaClinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, USA. Electronic address: payal.khincha@nih.gov.
Allison Werner-LinSchool of Social Policy and Practice, University of Pennsylvania, Philadelphia, USA. Electronic address: awer@sp2.upenn.edu.
National Cancer Institute · USCedars-Sinai Medical Center · USDivision of Cancer Epidemiology and GeneticsThe University of Texas at Austin · USUniversity of Pennsylvania · USUniversity of Tennessee at Knoxville · US

Funding

Intramural NIH HHS Z99 CA999999
6 · The paper itself

Abstract

objectivesThis qualitative-descriptive study explored adolescent and young adult (AYA) perspectives, experiences, and challenges with openness and closedness in family communication about Li-Fraumeni syndrome (LFS).

methodsWe conducted interviews with AYAs (aged 15-39 years) with LFS enrolled in the National Cancer Institute's LFS study (NCT01443468). An interprofessional clinician-researcher team analyzed transcribed data using the constant comparative method and interpretive description.

resultsAYAs (N = 38; 26 females, 12 males, mean age=29 years) reported navigating openness and closedness about LFS in their families, which varied by LFS topic, relationship, disease trajectory, and developmental phase. AYAs described communication challenges, including broaching difficult topics (e.g., reproductive decision-making, end-of-life), balancing information-sharing with emotionally protecting family and self, and struggling with interactions that cause relational tensions.

conclusionsAYAs reported experiencing LFS family communication challenges that disrupted their psychosocial well-being. LFS-related stressors and life transitions complicated and were complicated by these challenging family interactions. PRACTICE IMPLICATIONS: Clinicians may support AYAs with LFS by inquiring about family communication, responding empathically to communication concerns, providing resources to support difficult conversations, and engaging mental health providers as needed. Researchers could partner with AYAs to develop tailored communication skills training and social support tools.

Indexed as

Li-Fraumeni SyndromeNeoplasmsPsychiatric RehabilitationAdolescentAdultCommunicationFemaleHumansMaleQualitative ResearchSocial SupportYoung AdultAdolescents and young adultsCancerFamily communicationGenetic diseaseLi-Fraumeni syndrome

Identifiers

PMID35918231
PMCPMC9529832
OpenAlexW4286255108

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

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.