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1.
JMIR Res Protoc ; 13: e55700, 2024 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-38324365

RESUMO

BACKGROUND: Black women experience a higher prevalence of poor asthma outcomes and physical inactivity than their White counterparts. Black women comprise a particularly vulnerable group of patients with asthma, with some of the highest rates of asthma in adults, high health care use (emergency department visits and hospitalizations), and the highest crude asthma mortality rate of all race or ethnicity groups. Despite recommendations to engage in regular physical activity, fewer than 15% of Black women meet the 2008 National Physical Activity Guidelines, the lowest of all racial subgroups of adults. Given the connection between physical inactivity and poor asthma outcomes, addressing physical activity among Black women with asthma is imperative. OBJECTIVE: This 2-arm randomized controlled trial aims to (1) determine the efficacy of a lifestyle walking intervention on asthma control compared to an education (control) group over 24 weeks, (2) examine the maintenance effects of the lifestyle walking intervention on asthma control at 48 weeks, (3) explore the behavioral mediators (eg, self-efficacy, social support, self-regulation, and daily physical activity levels) and contextual moderators (eg, baseline asthma severity, neighborhood environment, comorbid conditions, and social determinants of health) that contribute to treatment responsiveness, and (4) assess the reach and implementation potential of the intervention. METHODS: The proposed study (ACTION [A Lifestyle Physical Activity Intervention for Minority Women with Asthma]) delivers a 24-week lifestyle walking intervention designed for and by urban Black women with asthma. Participants (n=224) will be recruited through 2 urban health care systems that care for a diverse Black population. Patients will be randomized to one of two groups: (1) ACTION intervention (group sessions, physical activity self-monitoring-Fitbit, and text-based support for step goal setting) or (2) education control (an individual asthma education session and SMS text messages related to asthma education). Outcome assessments will take place at baseline, 12, 24, and 48 weeks. The primary outcome is a change in asthma control from baseline to week 24 as assessed by the asthma control questionnaire-6 (ACQ-6). Secondary outcomes include asthma-related quality of life, health care use, and asthma exacerbations and behavioral outcomes such as self-efficacy, self-regulation, social support, and physical activity. RESULTS: This study was funded by the National Institute of Minority Health Disparities in August 2022. We pilot-tested our recruitment and intervention procedures and began recruitment in April 2023, with the enrollment of our first participant in May 2023. The anticipated completion of the study is April 2027. CONCLUSIONS: This study will deliver a new approach to physical activity interventions in Black women with asthma and help to provide guidance for addressing physical activity within this subgroup. This study will also provide a potential framework for future studies in minoritized populations with other disease conditions associated with low levels of physical activity. TRIAL REGISTRATION: ClinicalTrials.gov NCT05726487; https://clinicaltrials.gov/study/NCT05726487. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/55700.

2.
JTCVS Open ; 16: 1063-1069, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38204632

RESUMO

Objective: Pneumonia, both in the community and the hospital setting, represents a significant cause of morbidity and mortality in the cardiothoracic patient population. Diagnosis of pneumonia can be masked by other disease processes and is often diagnosed after the patient is already experiencing the disease. A noninvasive, sensitive test for pneumonia could decrease hospitalizations and length of stay for patients. We have developed a porcine model of pneumonia and evaluated the exhaled breath of infected pigs for biomarkers of infection. Methods: Anesthetized 60-kg adult pigs were intubated, and a bronchoscope was used to instill a solution containing 12 × 108 cfu of methicillin-sensitive Staphylococcus aureus or a control solution without bacteria (Sham) into the distal airways. The pigs were then reintubated on postoperative days 3, 6, and 9, with bronchoscopic bronchial lavages taken at each time point. At each time point, a 500-mL breath was captured from each pig. The breath was evacuated over a silicon microchip, with the volatile carbonyl compounds from the breath captured via oximation reaction, and the results of this capture were analyzed by ultra-high performance liquid chromatography mass spectrometry. Results: A total of 64% of the pigs inoculated with methicillin-sensitive S. aureus demonstrated consolidation on chest radiography and increasing counts of methicillin-sensitive S. aureus in the bronchial lavages over the span of the experiment, consistent with development of pneumonia. Analysis of the exhaled breath demonstrated 1 carbonyl compound (2-pentenal) that increased 10-fold over the span of the experiment, from an average of 0.0294 nmol/L before infection to an average of 0.3836 nmol/L on postoperative day 9. The amount of 2-pentenal present was greater in the breath of infected pigs than in the noninfected pigs or the sham inoculated pigs at postoperative days 6 and 9. Using an elevated concentration of 2-pentenal as a marker of infection yielded a sensitivity of 88% and specificity of 92% at postoperative day 6, and a sensitivity and specificity of 100% at postoperative day 9. Conclusions: We were able to successfully develop a clinical pneumonia in adult 60-kg pigs. The concentration of 2-pentenal correlated with the presence of pneumonia, demonstrating the potential for this compound to function as a biomarker for methicillin-sensitive S. aureus infection in pigs.

3.
Chest ; 162(2): 394-405, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35337808

RESUMO

Patients with familial pulmonary fibrosis represent a subset of patients with pulmonary fibrosis in whom inherited gene variation predisposes them to disease development. In the appropriate setting, genetic testing allows for personalized assessment of disease, recognition of clinically relevant extrapulmonary manifestations, and assessing susceptibility in unaffected relatives. However currently, the use of genetic testing is inconsistent, partly because of the lack of guidance regarding high-yield scenarios in which the results of genetic testing can inform clinical decision-making. To address this, the Pulmonary Fibrosis Foundation commissioned a genetic testing work group comprising pulmonologists, geneticists, and genetic counselors from the United States to provide guidance on genetic testing in patients with pulmonary fibrosis. This CHEST special feature presents a concise review of these proceedings and reviews pulmonary fibrosis susceptibility, clinically available genetic testing methods, and clinical scenarios in which genetic testing should be considered.


Assuntos
Testes Genéticos , Fibrose Pulmonar Idiopática , Humanos , Fibrose Pulmonar Idiopática/genética , Estados Unidos
4.
Br J Nurs ; 31(1): 28-32, 2022 Jan 13.
Artigo em Inglês | MEDLINE | ID: mdl-35019737

RESUMO

Urological conditions have become increasingly common and early diagnosis is key to achieving better outcomes. This article discusses the importance of having a comprehensive understanding of urological disorders, having the skills to interpret relevant information, and recognising the relationships among given elements to make an appropriate clinical diagnosis.


Assuntos
Resolução de Problemas , Pensamento , Competência Clínica , Humanos , Sistema Urogenital
5.
J Genet Couns ; 31(2): 356-363, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34369024

RESUMO

Genetic testing is an instrumental tool used to determine whether an individual has a predisposition to certain cancers. Knowing of a hereditary cancer predisposition may allow a patient and their family to consider high-risk screening or risk-reducing options. Genetic counselors work with physicians to identify patients at increased risk for genetic testing using available guidelines such as those provided by the National Comprehensive Cancer Network (NCCN). Information within one hospital system's cancer registry was used to identify individuals who qualify for genetic testing. This includes patients with a history of cancer of the breast (diagnosis ≤45, triple negative (TN) ≤60, and male), ovaries, colon (diagnosis ≤50), or uterus (diagnosis ≤50). Within this hospital system's registry, there are six cancer centers. Data were collected from cancer centers that utilized genetic counselors (GCs), and cancer centers that did not (non-GC) to determine whether there was a difference in genetic testing rates between GC and non-GC cancer centers. An analysis of 695 patients demonstrated a significantly higher proportion of eligible patients undergoing genetic testing at the GC cancer centers than at the non-GC cancer centers (91.6% versus 68.7%, p < .001). Further analysis of specific cancers showed a significantly higher uptake of genetic testing for eligible patients with colon cancer (90.8% versus 50%, p < .001), breast cancer ≤45 (99.5% versus 86%, p < .001), and ovarian cancer (91.3% versus 62.8%, p < .001) at the GC cancer centers than at the non-GC cancer centers. There was no significant difference in the proportion of testing of TN breast cancer ≤60 or uterine cancer ≤50 between cancer centers. These data suggest that having a GC working within a cancer center increases the ability to identify and offer testing to patients who meet NCCN genetic testing criteria based on their cancer type.


Assuntos
Neoplasias da Mama , Conselheiros , Neoplasias da Mama/genética , Feminino , Predisposição Genética para Doença , Testes Genéticos , Hospitais , Humanos , Masculino , Estados Unidos
6.
Br J Nurs ; 30(22): 1288-1294, 2021 Dec 09.
Artigo em Inglês | MEDLINE | ID: mdl-34889675

RESUMO

Assessment of symptoms affecting the genitourinary system is in high demand as they can significantly impact on quality of life. Nurses with advanced skills in communication, consultation and specialist knowledge play a key role in improving the experience for patients presenting with genitourinary symptoms.


Assuntos
Qualidade de Vida , Encaminhamento e Consulta , Comunicação , Humanos , Sistema Urogenital
7.
Pediatr Hematol Oncol ; 38(8): 707-721, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-33900873

RESUMO

High grade gliomas (HGG) have a dismal prognosis with survival rates of 15-35%. Approximately 10-12% of pediatric HGG occur in young children and their molecular biology and clinical outcomes differ from those arising at older ages. We report on four children aged <5 years newly diagnosed with non-brainstem HGG between 2011 and 2018 who were treated with surgery and BBSFOP chemotherapy. Two died of tumor progression. The other two are still alive without radiotherapy at 3.8 and 3.9 years from diagnosis: one of whom remains disease-free off treatment; and the other one, whose tumor harbored a KCTD16:NTRK2 fusion, went on to receive larotrectinib. Additionally we review the general management, outcomes and latest updates in molecular biology and targeted therapies for young children with HGG. Infant gliomas can be stratified in molecular subgroups with clinically actionable oncogenic drivers. Chemotherapy-based strategies can avoid or delay the need for radiotherapy in young children with HGG. Harnessing the potential of NTRK, ALK, ROS1 and MET inhibitors offers the opportunity to optimize the therapeutic armamentarium to improve current outcomes for these children.


Assuntos
Neoplasias Encefálicas , Glioma , Neoplasias Encefálicas/genética , Neoplasias Encefálicas/terapia , Pré-Escolar , Glioma/genética , Glioma/terapia , Humanos , Lactente
8.
Euro Surveill ; 24(8)2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30808443

RESUMO

BACKGROUND: Opportunistic human papillomavirus (HPV) vaccination for men who have sex with men (MSM) was piloted in sexual health clinics (SHC) in England between 2016 and 2018. AIM: to evaluate the pilot's first year (April 2016-March 2017) in terms of feasibility, acceptability, uptake, impact and equity and interpret the outcome in the context of wide HPV vaccination policy. METHODS: Attendance and uptake data from routine SHC surveillance datasets and a cross-sectional survey administered to individuals receiving the vaccine were analysed. RESULTS: Among 18,875 eligible MSM, 8,580 (45.5%) were recorded as having received one HPV vaccine dose, decreasing slightly with increasing age, and uptake was higher in rural than urban areas. Survey results suggested that of those receiving the first dose of HPV vaccine, 8% were new attendees and that among those, less than 11% attended just to receive the vaccine. Of those having their first HPV vaccination, 95% indicated they would like to receive the next vaccine doses at the same clinic and 85% of patients reported accessing other services when visiting SHC for the first dose of vaccine. CONCLUSION: An opportunistic HPV vaccination programme for MSM can be delivered in an acceptable and, as far as can be evaluated, equitable manner, without major disruption to SHC and HIV clinics.


Assuntos
Instituições de Assistência Ambulatorial/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Homossexualidade Masculina/estatística & dados numéricos , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/administração & dosagem , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Vacinação/estatística & dados numéricos , Adolescente , Adulto , Distribuição por Idade , Estudos Transversais , Estudos de Viabilidade , Humanos , Imunização , Masculino , Papillomaviridae , Infecções por Papillomavirus/epidemiologia , Infecções por Papillomavirus/virologia , Avaliação de Programas e Projetos de Saúde , População Rural , População Urbana
9.
Eur J Hum Genet ; 27(2): 183-197, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30291341

RESUMO

The profession of genetic counseling (also called genetic counselling in many countries) began nearly 50 years ago in the United States, and has grown internationally in the past 30 years. While there have been many papers describing the profession of genetic counseling in individual countries or regions, data remains incomplete and has been published in diverse journals with limited access. As a result of the 2016 Transnational Alliance of Genetic Counseling (TAGC) conference in Barcelona, Spain, and the 2017 World Congress of Genetic Counselling in the UK, we endeavor to describe as fully as possible the global state of genetic counseling as a profession. We estimate that in 2018 there are nearly 7000 genetic counselors with the profession established or developing in no less than 28 countries.


Assuntos
Conselheiros/estatística & dados numéricos , Aconselhamento Genético/estatística & dados numéricos , Congressos como Assunto , Conselheiros/educação , Conselheiros/normas , Emprego/estatística & dados numéricos , Humanos , Sociedades Médicas
10.
Toxicol Appl Pharmacol ; 315: 1-11, 2017 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-27913141

RESUMO

Chlorine is a pulmonary toxicant to which humans can be exposed through accidents or intentional releases. Acute effects of chlorine inhalation in humans and animal models have been well characterized, but less is known about persistent effects of acute, high-level chlorine exposures. In particular, animal models that reproduce the long-term effects suggested to occur in humans are lacking. Here, we report the development of a rabbit model in which both acute and persistent effects of chlorine inhalation can be assessed. Male New Zealand White rabbits were exposed to chlorine while the lungs were mechanically ventilated. After chlorine exposure, the rabbits were extubated and were allowed to survive for up to 24h after exposure to 800ppm chlorine for 4min to study acute effects or up to 7days after exposure to 400ppm for 8min to study longer term effects. Acute effects observed 6 or 24h after inhalation of 800ppm chlorine for 4min included hypoxemia, pulmonary edema, airway epithelial injury, inflammation, altered baseline lung mechanics, and airway hyperreactivity to inhaled methacholine. Seven days after recovery from inhalation of 400ppm chlorine for 8min, rabbits exhibited mild hypoxemia, increased area of pressure-volume loops, and airway hyperreactivity. Lung histology 7days after chlorine exposure revealed abnormalities in the small airways, including inflammation and sporadic bronchiolitis obliterans lesions. Immunostaining showed a paucity of club and ciliated cells in the epithelium at these sites. These results suggest that small airway disease may be an important component of persistent respiratory abnormalities that occur following acute chlorine exposure. This non-rodent chlorine exposure model should prove useful for studying persistent effects of acute chlorine exposure and for assessing efficacy of countermeasures for chlorine-induced lung injury.


Assuntos
Lesão Pulmonar Aguda/induzido quimicamente , Artérias/efeitos dos fármacos , Cloro/toxicidade , Modelos Animais de Doenças , Doenças Vasculares/induzido quimicamente , Animais , Relação Dose-Resposta a Droga , Exposição por Inalação , Masculino , Coelhos
11.
J Genet Couns ; 24(1): 179-88, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25120038

RESUMO

Several barriers inhibit collection and use of detailed family health history (FHH) in primary care. MeTree, a computer-based FHH intake and risk assessment tool with clinical decision support, was developed to overcome these barriers. Here, we describe the impact of MeTree on genetic counseling (GC) referrals and attendance. Non-adopted, English speaking adults scheduled for a well-visit in two community-based primary-care clinics were invited to participate in an Implementation-Effectiveness study of MeTree. Participants' demographic characteristics and beliefs were assessed at baseline. Immediately after an appointment with a patient for whom GC was recommended, clinicians indicated whether they referred the patient and, if not, why. The study genetic counselor kept a database of patients with a GC recommendation and contacted those with a referral. Of 542 patients completing MeTree, 156 (29 %) received a GC recommendation. Of these, 46 % (n = 72) were referred and 21 % (n = 33) underwent counseling. Patient preferences, additional clinical information unavailable to MeTree, and an incomplete clinician evaluation of the FHH accounted for the 85 patients clinicians chose not to refer. Although MeTree identified a significant proportion of patients for whom GC was recommended, persistent barriers indicate the need for improved referral processes and patient and physician education about the benefits of GC.


Assuntos
Doença Crônica/prevenção & controle , Saúde da Família , Aconselhamento Genético/normas , Anamnese/normas , Atenção Primária à Saúde/normas , Adulto , Instituições de Assistência Ambulatorial , Coleta de Dados/métodos , Sistemas de Apoio a Decisões Clínicas , Feminino , Humanos , Masculino , Medição de Risco/normas
12.
J Genet Couns ; 24(3): 438-51, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25475919

RESUMO

Specialization within genetic counseling is apparent, with 29 primary specialties listed in the National Society of Genetic Counselors' 2012 Professional Status Survey (PSS). PSS results show a steady proportion of genetic counselors primarily involved in public health, yet do not identify all those performing public health activities. Little is known about the skills needed to perform activities outside of "traditional" genetic counselor roles and the expertise needed to execute those skills. This study aimed to identify genetic counselors engaging in public health activities, the skills used, and the most influential sources of learning for those skills. Participants (N = 155) reported involvement in several public health categories: (a) Education of Public and/or Health Care Providers (n = 80, 52 %), (b) Population-Based Screening Programs (n = 70, 45 %), (c) Lobbying/Public Policy (n = 62, 40 %), (d) Public Health Related Research (n = 47, 30 %), and (e) State Chronic Disease Programs (n = 12, 8 %). Regardless of category, "on the job" was the most common primary source of learning. Genetic counseling training program was the most common secondary source of learning. Results indicate that the number of genetic counselors performing public health activities is likely higher than PSS reports, and that those who may not consider themselves "public health genetic counselors" do participate in public health activities. Genetic counselors learn a diverse skill set in their training programs; some skills are directly applicable to public health genetics, while other public health skills require additional training and/or knowledge.


Assuntos
Aconselhamento Genético , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Saúde Pública/educação , Especialização , Competência Clínica , Feminino , Humanos , Aprendizagem , Masculino , Inquéritos e Questionários , Recursos Humanos
13.
PLoS One ; 9(9): e107596, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25264898

RESUMO

Currently, the treatment for ovarian cancer entails cytoreductive surgery followed by chemotherapy, mainly, carboplatin combined with paclitaxel. Although this regimen is initially effective in a high percentage of cases, unfortunately within few months of initial treatment, tumor relapse occurs because of platinum-resistance. This is attributed to chemo-resistance of cancer stem cells (CSCs). Herein we show for the first time that withaferin A (WFA), a bioactive compound isolated from the plant Withania somnifera, when used alone or in combination with cisplatin (CIS) targets putative CSCs. Treatment of nude mice bearing orthotopic ovarian tumors generated by injecting human ovarian epithelial cancer cell line (A2780) with WFA and cisplatin (WFA) alone or in combination resulted in a 70 to 80% reduction in tumor growth and complete inhibition of metastasis to other organs compared to untreated controls. Histochemical and Western blot analysis of the tumors revealed that inclusion of WFA (2 mg/kg) resulted in a highly significant elimination of cells expressing CSC markers - CD44, CD24, CD34, CD117 and Oct4 and downregulation of Notch1, Hes1 and Hey1 genes. In contrast treatment of mice with CIS alone (6 mg/kg) had opposite effect on those cells. Increase in cells expressing CSC markers and Notch1 signaling pathway in tumors exposed to CIS may explain recurrence of cancer in patients treated with carboplatin and paclitaxel. Since, WFA alone or in combination with CIS eliminates putative CSCs, we conclude that WFA in combination with CIS may present more efficacious therapy for ovarian cancer.


Assuntos
Divisão Celular/efeitos dos fármacos , Cisplatino/farmacologia , Metástase Neoplásica/prevenção & controle , Neoplasias Epiteliais e Glandulares/patologia , Células-Tronco Neoplásicas/efeitos dos fármacos , Neoplasias Ovarianas/patologia , Vitanolídeos/farmacologia , Animais , Biomarcadores Tumorais/metabolismo , Carcinoma Epitelial do Ovário , Linhagem Celular Tumoral , Cisplatino/administração & dosagem , Feminino , Humanos , Camundongos , Camundongos Nus , Neoplasias Epiteliais e Glandulares/metabolismo , Células-Tronco Neoplásicas/metabolismo , Neoplasias Ovarianas/metabolismo , Vitanolídeos/administração & dosagem
14.
Am J Med Genet C Semin Med Genet ; 166C(1): 24-33, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24616329

RESUMO

UNLABELLED: The Genomic Medicine Model aims to facilitate patient engagement, patient/provider education of genomics/personalized medicine, and uptake of risk-stratified evidence-based prevention guidelines using MeTree, a patient-facing family health history (FHH) collection and clinical decision support (CDS) program. Here we report the number of increased risk (above population-level risk) patients identified for breast/ovarian cancer, colon cancer, hereditary syndrome risk, and thrombosis; the prevalence of FHH elements triggering increased-risk status; and the resources needed to manage their risk. STUDY DESIGN: hybrid implementation-effectiveness study of adults with upcoming well-visits in 2 primary care practices in Greensboro, NC. PARTICIPANTS: 1,184, mean age = 58.8, female = 58% (N = 694), non-white = 20% (N = 215). Increased Risk: 44% (N = 523). RECOMMENDATIONS: genetic counseling = 26% (N = 308), breast MRI = 0.8% (N = 10), breast chemoprophylaxis = 5% (N = 58), early/frequent colonoscopies = 19% (N = 221), ovarian cancer screening referral = 1% (N = 14), thrombosis testing/counseling = 2.4% (N = 71). FHH elements: 8 FHH elements lead to 37.3% of the increased risk categorizations (by frequency): first-degree-relative (FDR) with polyps age ≥60 (7.1%, N = 85), three relatives with Lynch-related cancers (5.4%, N = 65), FDR with polyps age <60 (5.1%, N = 61), three relatives on same side of family with same cancer (4.9%, N = 59), Gail score ≥1.66% (4.9%, N = 58), two relatives with breast cancer (one ≤age 50) (4.1%, N = 49), one relative with breast cancer ≤age 40 (4.1%, N = 48), FDR with colon cancer age ≥60 (1.7%, N = 20). MeTree identifies a high percentage of individuals in the general primary care population needing non-routine risk management/prevention for the selected conditions. Implementing risk-stratification in primary care will likely increase demand for related-resources, particularly colon screening and GC. Understanding the prevalence of FHH elements helps predict resource needs and may aid in guideline development.


Assuntos
Técnicas de Apoio para a Decisão , Genética Médica/métodos , Anamnese/métodos , Medicina de Precisão/métodos , Atenção Primária à Saúde/métodos , Medição de Risco/métodos , Adulto , Aconselhamento Genético/métodos , Genética Médica/tendências , Humanos , Neoplasias/genética , North Carolina , Medicina de Precisão/tendências , Atenção Primária à Saúde/tendências , Medição de Risco/estatística & dados numéricos , Trombose/genética
15.
Fam Cancer ; 13(2): 325-32, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24515581

RESUMO

BACKGROUND: Family health history (FHH) is an underutilized tool in primary care to identify and risk-stratify individuals with increased cancer risk. OBJECTIVE: Evaluate the influence of patient education on quantity and quality of FHH entered into a primary care-based software program, and impact on the program's cancer risk management recommendations. DESIGN: Two primary care practices within a larger type II hybrid implementation-effectiveness controlled clinical trial. PARTICIPANTS: English speaking non-adopted patients with a well visit appointment December 2012-March 2013. INTERVENTIONS: One to two weeks prior to their well visit appointment, participants entered their FHH into the program. PARTICIPANTS were then provided educational materials describing key FHH components. They were instructed to use the interval to collect additional FHH information. Patients then returned for their scheduled appointment, and updated their FHH with any new information. MAIN MEASURES: Percentage per pedigree of relatives meeting individual quality criteria. Changes made after patient education and changes to recommendations for surveillance, chemoprevention or genetic counseling referral. KEY RESULTS: Post patient education, pedigrees exhibited a greater percentage (per pedigree) of: deceased relatives with age at death (84 vs. 81 % p = 0.02), deceased relatives with cause of death (91 vs. 87 % p = 0.02), relatives with a named health condition (45 vs. 42 % p = 0.002), and a greater percentage of relatives with high quality records (91 vs. 89 % p = 0.02). Of 43 participants with pedigree changes that could trigger changes in risk stratified prevention recommendations, 12 participants (28 %) received such changes. CONCLUSIONS: Patient education improves FHH collection and subsequent risk stratification utilized in providing actionable evidence-based care recommendations for cancer risk management.


Assuntos
Saúde da Família , Anamnese/normas , Neoplasias/genética , Educação de Pacientes como Assunto , Atenção Primária à Saúde/métodos , Idoso , Causas de Morte , Coleta de Dados , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/prevenção & controle , Linhagem , Medição de Risco
16.
BMC Fam Pract ; 15: 31, 2014 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-24520818

RESUMO

BACKGROUND: Studies have shown that the quality of family health history (FHH) collection in primary care is inadequate to assess disease risk. To use FHH for risk assessment, collected data must have adequate detail. To address this issue, we developed a patient facing FHH assessment tool, MeTree. In this paper we report the content and quality of the FHH collected using MeTree. DESIGN: A hybrid implementation-effectiveness study. Patients were recruited from 2009 to 2012. SETTING: Two community primary care clinics in Greensboro, NC. PARTICIPANTS: All non-adopted adult English speaking patients with upcoming appointments were invited to participate. INTERVENTION: Education about and collection of FHH with entry into MeTree. MEASURES: We report the proportion of pedigrees that were high-quality. High-quality pedigrees are defined as having all the following criteria: (1) three generations of relatives, (2) relatives' lineage, (3) relatives' gender, (4) an up-to-date FHH, (5) pertinent negatives noted, (6) age of disease onset in affected relatives, and for deceased relatives, (7) the age and (8) cause of death (Prim Care31:479-495, 2004.). RESULTS: Enrollment: 1,184. Participant demographics: age range 18-92 (mean 58.8, SD 11.79), 56% male, and 75% white. The median pedigree size was 21 (range 8-71) and the FHH entered into MeTree resulted in a database of 27,406 individuals. FHHs collected by MeTree were found to be high quality in 99.8% (N = 1,182/1,184) as compared to <4% at baseline. An average of 1.9 relatives per pedigree (range 0-50, SD 4.14) had no data reported. For pedigrees where at least one relative has no data (N = 497/1,184), 4.97 relatives per pedigree (range 1-50, SD 5.44) had no data. Talking with family members before using MeTree significantly decreased the proportion of relatives with no data reported (4.98% if you talked to your relative vs. 10.85% if you did not, p-value < 0.001.). CONCLUSION: Using MeTree improves the quantity and quality of the FHH data that is collected and talking with relatives prior to the collection of FHH significantly improves the quantity and quality of the data provided. This allows more patients to be accurately risk stratified and offered appropriate preventive care guided by their risk level. TRIAL NUMBER: NCT01372553.


Assuntos
Saúde da Família , Anamnese/normas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos de Pesquisa
18.
N C Med J ; 74(4): 279-86, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24044144

RESUMO

BACKGROUND: Family health history can predict a patient's risk for common complex diseases. This project assessed the completeness of family health history data in medical charts and evaluated the utility of these data for performing risk assessments in primary care. METHODS: Family health history data were collected and analyzed to determine the presence of quality indicators that are necessary for effective and accurate assessment of disease risk. RESULTS: More than 99% of the 390 paper charts analyzed contained information about family health history, which was usually scattered throughout the chart. Information on the health of the patient's parents was collected more often than information on the health of other relatives. Key information that was often not collected included age of disease onset, affected side of the family, and second-degree relatives affected. Less than 4% of patient charts included family health histories that were informative enough to accurately assess risk for common complex diseases. LIMITATIONS: Limitations of this study include the small number of charts reviewed per provider, the fact that the sample consisted of primary care providers in a single geographic location, and the inability to assess ethnicity, consanguinity, and other indicators of the informativeness of family health history. CONCLUSIONS: The family health histories collected in primary care are usually not complete enough to assess the patient's risk for common complex diseases. This situation could be improved with use of tools that analyze the family health history information collected and provide risk-stratified decision support recommendations for primary care.


Assuntos
Doença Crônica , Família , Anamnese , Atenção Primária à Saúde , Feminino , Humanos , Masculino , Auditoria Médica , Indicadores de Qualidade em Assistência à Saúde , Medição de Risco , Fatores de Risco
19.
N C Med J ; 74(4): 287-96, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-24044145

RESUMO

INTRODUCTION: Family health history is a strong predictor of disease risk. To reduce the morbidity and mortality of many chronic diseases, risk-stratified evidence-based guidelines strongly encourage the collection and synthesis of family health history to guide selection of primary prevention strategies. However, the collection and synthesis of such information is not well integrated into clinical practice. To address barriers to collection and use of family health histories, the Genomedical Connection developed and validated MeTree, a Web-based, patient-facing family health history collection and clinical decision support tool. MeTree is designed for integration into primary care practices as part of the genomic medicine model for primary care. METHODS: We describe the guiding principles, operational characteristics, algorithm development, and coding used to develop MeTree. Validation was performed through stakeholder cognitive interviewing, a genetic counseling pilot program, and clinical practice pilot programs in 2 community-based primary care clinics. RESULTS: Stakeholder feedback resulted in changes to MeTree's interface and changes to the phrasing of clinical decision support documents. The pilot studies resulted in the identification and correction of coding errors and the reformatting of clinical decision support documents. MeTree's strengths in comparison with other tools are its seamless integration into clinical practice and its provision of action-oriented recommendations guided by providers' needs. LIMITATIONS: The tool was validated in a small cohort. CONCLUSION: MeTree can be integrated into primary care practices to help providers collect and synthesize family health history information from patients with the goal of improving adherence to risk-stratified evidence-based guidelines.


Assuntos
Doença Crônica/prevenção & controle , Sistemas de Apoio a Decisões Clínicas , Família , Anamnese/métodos , Atenção Primária à Saúde , Adolescente , Adulto , Idoso , Coleta de Dados/métodos , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Medição de Risco , Adulto Jovem
20.
BMC Fam Pract ; 14: 111, 2013 Aug 06.
Artigo em Inglês | MEDLINE | ID: mdl-23915256

RESUMO

BACKGROUND: Family health history (FHH) is the single strongest predictor of disease risk and yet is significantly underutilized in primary care. We developed a patient facing FHH collection tool, MeTree, that uses risk stratification to generate clinical decision support for breast cancer, colorectal cancer, ovarian cancer, hereditary cancer syndromes, and thrombosis. Here we present data on the experience of patients and providers after integration of MeTree into 2 primary care practices. METHODS: This was a Type 2 hybrid controlled implementation-effectiveness study in 3 community-based primary care clinics in Greensboro, NC. All non-adopted adult English speaking patients with upcoming routine appointments were invited. Patients were recruited from December 2009 to the present and followed for one year. Ease of integration of MeTree into clinical practice at the two intervention clinics was evaluated through patient surveys after their appointment and at 3 months post-visit, and physician surveys 3 months after tool integration. RESULTS: Total enrollment =1,184. Average time to complete MeTree = 27 minutes. Patients found MeTree: easy to use (93%), easy to understand (97%), useful (98%), raised awareness of disease risk (85%), and changed how they think about their health (86%). Of the 26% (N = 311) asking for assistance to complete the tool, age (65 sd 9.4 vs. 57 sd 11.8, p-value < 0.00) and large pedigree size (24.4 sd 9.81 vs. 22.2 sd 8.30, p-value < 0.00) were the only significant factors; 77% of those requiring assistance were over the age of 60. Providers (N = 14) found MeTree: improved their practice (86%), improved their understanding of FHH (64%), made practice easier (79%), and worthy of recommending to their peers (93%). CONCLUSIONS: Our study shows that MeTree has broad acceptance and support from both patients and providers and can be implemented without disruption to workflow.


Assuntos
Atitude do Pessoal de Saúde , Sistemas de Apoio a Decisões Clínicas , Anamnese/métodos , Neoplasias/prevenção & controle , Aceitação pelo Paciente de Cuidados de Saúde , Atenção Primária à Saúde/métodos , Trombose/prevenção & controle , Idoso , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Neoplasias Colorretais/genética , Neoplasias Colorretais/prevenção & controle , Diagnóstico por Computador/métodos , Detecção Precoce de Câncer/métodos , Família , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/genética , Síndromes Neoplásicas Hereditárias/genética , Síndromes Neoplásicas Hereditárias/prevenção & controle , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle , Medição de Risco/métodos , Trombose/genética
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