10 years later: Assessing the impact of public health efforts on the collection of family health history

Welch, Brandon M.; O’Connell, Nathaniel S.; Schiffman, Joshua D.

doi:10.1002/ajmg.a.37139

Cited by 40 publications

(32 citation statements)

References 12 publications

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“…The general population appears to have high levels of family history knowledge of general health issues such as diabetes (Welch, O’Connell, & Schiffman, 2015), but this may not be the case for many Deaf individuals. Since most Deaf individuals have hearing family members, there is frequently a language barrier that results in a loss of family history awareness (Hauser, O’ Hearn, McKee, Steider, & Thew, 2010).…”

Section: Discussionmentioning

confidence: 99%

Assessing Health Literacy in Deaf American Sign Language Users

McKee

Paasche‐Orlow

Winters

et al. 2015

Journal of Health Communication

158

112

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Communication and language barriers isolate Deaf American Sign Language (ASL) users from mass media, healthcare messages, and health care communication, which when coupled with social marginalization, places them at a high risk for inadequate health literacy. Our objectives were to translate, adapt, and develop an accessible health literacy instrument in ASL and to assess the prevalence and correlates of inadequate health literacy among Deaf ASL users and hearing English speakers using a cross-sectional design. A total of 405 participants (166 Deaf and 239 hearing) were enrolled in the study. The Newest Vital Sign was adapted, translated, and developed into an ASL version of the NVS (ASL-NVS). Forty-eight percent of Deaf participants had inadequate health literacy, and Deaf individuals were 6.9 times more likely than hearing participants to have inadequate health literacy. The new ASL-NVS, available on a self-administered computer platform, demonstrated good correlation with reading literacy. The prevalence of Deaf ASL users with inadequate health literacy is substantial, warranting further interventions and research.

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Section: Discussionmentioning

confidence: 99%

Assessing Health Literacy in Deaf American Sign Language Users

McKee

Paasche‐Orlow

Winters

et al. 2015

Journal of Health Communication

158

112

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“…Despite multiple USA national strategies initiated to improve individuals’ family history recording little change has occurred over a 10 year period; only 36.9% actively collecting it (Welch et al. ).…”

Section: Discussionmentioning

confidence: 99%

“…Family history is a very important assessment tool in detecting those at risk (Welch et al. ). We know that primary relatives have at least twice the risk of certain cancers; especially breast cancer (Colditz et al.…”

Section: Introductionmentioning

confidence: 99%

Targeting breast cancer outcomes‐what about the primary relatives?

Johnston

Sugrue

2017

Molec Gen & Gen Med

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BackgroundUp to 65% of newly diagnosed breast cancer patients had not been screened correctly before diagnosis resulting in increased stage of cancer at presentation. This study assessed whether their primary relatives are, in turn, assessed appropriately.MethodsAn ethically approved prospective study involving 274 primary relatives of women diagnosed with breast cancer, between 2009–2012, at a symptomatic breast unit in Ireland. Telephone interview established: demographics, menstrual history, family history verification, breast screening history. Personal risk level was calculated and whether current screening met screening guidelines. Participants were enrolled into appropriate screening programs if currently not in one and results analyzed.ResultsTwo hundred and fifteen of the 280 (76.8%) newly diagnosed patients responded giving details of their 274 primary relatives; this made up the study cohort. Mean age 50 ± 10 (35–75). Thirty two percent were low risk, 64% moderate and 4% high. 190/274 (69%) were being screened appropriately. Seventy five relatives were then assessed with: mammography in 55, Mg and US in 16. Four underwent a biopsy and to date none had cancer. Surveillance was: annual screening in 48%; national screening program and General Practitioner (GP) in 33%; GP only in over 65s in 13%; 6% await further assessment at specialist genetics clinics where their surveillance will be decided.ConclusionsThis study has identified an opportunity to improve the delivery of appropriate screening to higher risk primary relatives of patients with breast cancer. This necessitates an integrated national approach involving providers of primary care, patients and screening breast programs.

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“…112 However, family history recording and assessment has been a weakness in the oncology community 123,124 challenges for family history collection include lack of time, lack of training, lack of accuracy, and lack of family history tools for clinicians and their patients. 125,126 In many clinical trials and genomic research studies, family history has been omitted or incompletely recorded and/or reported. This, along with de novo mutations and incomplete penetrance, presents barriers when interpreting family history as a risk factor for cancer predisposition.…”

Section: Implications Of Genomics For Patient Management: Clinical Camentioning

confidence: 99%

Advances in the Treatment of Pediatric Bone Sarcomas

Grohar

Janeway

Mase

et al. 2017

American Society of Clinical Oncology Educational Book

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OVERVIEW Bone tumors make up a significant portion of noncentral nervous system solid tumor diagnoses in pediatric oncology patients. Ewing sarcoma and osteosarcoma, both with distinct clinical and pathologic features, are the two most commonly encountered bone cancers in pediatrics. Although mutations in the germline have classically been more associated with osteosarcoma, there is recent evidence germline alterations in patients with Ewing sarcoma also play a significant role in pathogenesis. Treatment advances in this patient population have lagged behind that of other pediatric malignancies, particularly targeted interventions directed at the biologic underpinnings of disease. Recent advances in biologic and genomic understanding of these two cancers has expanded the potential for therapeutic advancement and prevention. In Ewing sarcoma, directed focus on inhibition of EWSR1-FLI1 and its effectors has produced promising results. In osteosarcoma, instead of a concentrated focus on one particular change, largely due to tumor heterogeneity, a more diversified approach has been adopted including investigations of growth factors inhibitors, signaling pathway inhibitors, and immune modulation. Continuing recently made treatment advances relies on clinical trial design and enrollment. Clinical trials should include incorporation of biological findings; specifically, for Ewing sarcoma, assessment of alternative fusions and, for osteosarcoma, stratification utilizing biomarkers. Expanded cancer genomics knowledge, particularly with solid tumors, as it relates to heritability and incorporation of family history has led to early identification of patients with cancer predisposition. In these patients through application of cost-effective evidence-based screening techniques the ultimate goal of cancer prevention is becoming a realization.

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10 years later: Assessing the impact of public health efforts on the collection of family health history

Cited by 40 publications

References 12 publications

Assessing Health Literacy in Deaf American Sign Language Users

Assessing Health Literacy in Deaf American Sign Language Users

Targeting breast cancer outcomes‐what about the primary relatives?

Advances in the Treatment of Pediatric Bone Sarcomas

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