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1.
PLoS One ; 19(5): e0300396, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38728325

RESUMEN

For breast cancer survivors, returning to work is an important step for their personal, financial, and psycho-social recovery. Returning to work as a school counselor can be particularly challenging because of the demands of their job and stress at work. This qualitative study examines return to work among school counselors who are breast cancer survivors. In-depth, semi-structured interviews were conducted with 28 survivors of breast cancer stages I-III between the ages of 32 and 55, and up to ten years after the completion of chemotherapy. Interviews focused on the discovery of the illness, treatment period, ramifications of the diagnosis on various aspects of life, and implications for work. Using thematic analysis of the data collected, analysis of the findings revealed three key themes: 1) "Everyone is replaceable": The significance of disruptions in work continuity for school counselors who are breast cancer survivors. 2) "From Zero to a Hundred": Challenges Faced by Counselors in Returning to Work after Breast Cancer Recovery.3) "It's hard to listen to counselees' problems when I am immersed in my own crisis": How surviving breast cancer affects return to work among school counselors. Findings highlight the unique needs of these counselors and the challenges they face upon returning to work. The study discusses recommendations for school principals including training, advocacy, and awareness to support survivors and improve their return to work.


Asunto(s)
Neoplasias de la Mama , Supervivientes de Cáncer , Consejeros , Investigación Cualitativa , Reinserción al Trabajo , Humanos , Femenino , Neoplasias de la Mama/psicología , Reinserción al Trabajo/psicología , Supervivientes de Cáncer/psicología , Persona de Mediana Edad , Adulto , Consejeros/psicología , Instituciones Académicas , Consejo
2.
J Med Genet ; 61(2): 142-149, 2024 Jan 19.
Artículo en Inglés | MEDLINE | ID: mdl-38050080

RESUMEN

BACKGROUND: Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation. METHODS: Representatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions. RESULTS: Meeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients. CONCLUSIONS: Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.


Asunto(s)
Consejeros , Neoplasias , Humanos , Pruebas Genéticas , Neoplasias/genética , Predisposición Genética a la Enfermedad , Reino Unido , Células Germinativas
3.
J Genet Couns ; 33(1): 15-27, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-37950577

RESUMEN

Standardized patients and/or role-playing are commonly used for practicing genetic counseling (GC) skills. Use of digital simulation, incorporating gamification elements, would require fewer resources to sustain than standardized patients. This manuscript reports steps taken and the lessons learned from creating a digital "Choose your own adventure" simulation in which students select preferred dialog for a genetic counselor who is seeing an adult patient to discuss genetic testing for the known pathogenic variant that caused familial adenomatous polyposis (FAP) in their father. The case has three endings, one of which is attained by selecting options that are mostly consistent with motivational interviewing counseling techniques. We conducted a preliminary evaluation of our beta version among nine GC students and one educator using a survey to assess acceptability and appropriateness as well as to elicit open-ended feedback. All participants agreed or strongly agreed with statements indicating the case was acceptable, appropriate, and fun. Users particularly appreciated the immediate feedback given throughout the case simulation. Many users wanted more options to select from and listed various other recommendations, including several which would require substantial resources to implement.


Asunto(s)
Consejeros , Entrevista Motivacional , Adulto , Humanos , Asesoramiento Genético , Entrevista Motivacional/métodos , Consejo/educación , Pruebas Genéticas
4.
AIDS Behav ; 28(2): 609-624, 2024 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-38157133

RESUMEN

Human immunodeficiency virus remains a global public health problem. Despite efforts to determine the prevalence of non-adherence to ART and its predictors in Ethiopia, various primary studies presented inconsistent findings. Therefore, this review aimed to determine the pooled prevalence of non-adherence to ART and identify its predictors. We have searched PubMed, Google Scholar and Web of Science databases extensively for all available studies. A weighted inverse-variance random-effects model was used to compute the overall non-adherence to ART. The pooled prevalence of non-adherence to ART was 20.68% (95% CI: 17.74, 23.61); I2 = 98.40%; p < 0.001). Educational level of primary school and lower [AOR = 3.5, 95%CI: 1.7, 7.4], taking co-medications [AOR = 0.45, 95%CI: 0.35, 0.59], not using memory aids [AOR = 0.30, 95%CI: 0.13, 0.71], depression [AOR = 2.0, 95%CI: 1.05, 3.79], comorbidity [AOR = 2.12, 95%CI: 1.16, 3.09), under-nutrition [AOR = 2.02, 95%CI: 1.20, 3.43], not believing on ART can control HIV [AOR = 2.31, 95%CI: 1.92, 2.77], lack of access to health facilities [AOR = 3.86, 95%CI: 1.10, 13.51] and taking ART pills uncomfortably while others looking [AOR = 5.21, 95%CI: 2.56, 10.53] were significantly associated with non-adherence to anti-retroviral therapy. The overall pooled prevalence of non-adherence to ART was considerably high in Ethiopia. Educational status, taking co-medications, not using memory aids, depression, comorbidity, under nutrition, not believing on anti-retroviral therapy controls HIV, lack of access to health facilities and taking ART pills uncomfortably were independent predictors of non-adherence to ART in Ethiopia. Therefore, healthcare providers, adherence counselors and supporters should detect non-adherence behaviors and patients' difficulties with ART early, and provide intensive counseling to promote adherence.


Asunto(s)
Consejeros , Infecciones por VIH , Adulto , Humanos , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/epidemiología , VIH , Etiopía/epidemiología , Consejo
5.
BMC Cancer ; 23(1): 983, 2023 Oct 16.
Artículo en Inglés | MEDLINE | ID: mdl-37845629

RESUMEN

BACKGROUND: Despite decades of effort to reduce racial cancer disparities, Black people continue to die at higher rates from cancer than any other U.S. racial group. Because prevention is a key to the cost-effective and long-term control of cancer, the potential for cancer genetic counseling to play a central role in reducing racial cancer disparities is high. However, the benefits of genetic counseling are not equitable across race. Only 2% of genetic counselors self-identify as Black/African American, so most genetic counseling encounters with Black patients are racially discordant. Patients in racially discordant medical interactions tend to have poorer quality patient-provider communication and receive suboptimal clinical recommendations. One major factor that contributes to these healthcare disparities is racial bias. Drawing on findings from prior research, we hypothesize that genetic counselor providers' implicit racial prejudice will be associated negatively with the quality of patient-provider communication, while providers' explicit negative racial stereotypes will be associated negatively with the comprehensiveness of clinical discussions of cancer risk and genetic testing for Black (vs. White) patients. METHODS: Using a convergent mixed methods research design, we will collect data from at least 15 genetic counseling providers, from two different institutions, and their 220 patients (approximately equal number of Black and White patients per provider) whose appointments are for a hereditary cancer condition. The data sources will include two provider surveys, two patient surveys, video- and/or audio-recordings of genetic counseling encounters, and medical chart reviews. The recorded cancer genetic counseling in-person and telehealth encounters will be analyzed both qualitatively and quantitatively to assess the quality of patient-provider communication and the comprehensiveness of clinical discussion. Those data will be linked to pre- and post-encounter survey data and data from medical chart reviews to test our hypotheses. DISCUSSION: Findings from this multi-site study will highlight specific aspects of cancer genetic counseling encounters (patient-provider communication and clinical recommendations) that are directly associated with patient-centered outcomes (e.g., satisfaction, trust, genetic testing completion). Patient-provider communication and clinical recommendations are modifiable factors that can be integrated into current genetic counseling training curricula and thus can have immediate impact on genetic counseling training and practice.


Asunto(s)
Consejeros , Neoplasias , Humanos , Comunicación , Consejo , Asesoramiento Genético , Disparidades en Atención de Salud , Neoplasias/genética , Estudios Multicéntricos como Asunto
6.
Patient Educ Couns ; 116: 107946, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-37625308

RESUMEN

OBJECTIVE: Conduct a needs assessment to explore the experiences, barriers, and needs of genetic counselors (GCs), who counsel and refer young and metastatic breast cancer (BC) patients to support services, in order to develop resources to address any noticeable gaps. METHODS: GCs providing care to BC patients were eligible to complete the survey. Support services were defined as resources to address patient-centered healthcare, emotional, and quality-of-life needs. RESULTS: Most participants (n = 117) reported familiarity with cancer prevention services (93%); fewer were familiar with services secondary to a BC diagnosis (e.g., fatigue=16% and sexual health=24%). The volume of GCs indicating familiarity with support services increased significantly as work experience increased for seven services. Many (>50%) never referred patients to most (9/12) support services, excluding cancer prevention, mental health, and financial issues. Open-ended responses highlighted that GCs considered referrals to be outside their scope of practice or that healthcare systems prevent GCs from making referrals. CONCLUSION: GCs may benefit from curated resources and materials, especially for support services secondary to a BC diagnosis, to better support their patients. PRACTICAL IMPLICATIONS: Collaboration of GCs with other health professionals through integrative care programs may decrease burdens to accessing support services.


Asunto(s)
Neoplasias de la Mama , Consejeros , Humanos , Femenino , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Neoplasias de la Mama/complicaciones , Evaluación de Necesidades , Calidad de Vida/psicología , Emociones
7.
JCO Precis Oncol ; 7: e2300079, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-37384863

RESUMEN

PURPOSE: Over a 5-year or 10-year period, between 6% and 15% of germline cancer genetic variants undergo reclassification. Up-to-date interpretation can clarify a variant's clinical significance and guide patient management. As the frequency of reclassifications increase, the issue of whether, how, when, and which providers should recontact patients with information about reclassification becomes important. However, the field lacks research evidence and definitive guidance from professional organizations about how providers should recontact patients. We compared the perspectives of US oncologists and cancer genetic counselors (GCs) to describe their practices and views regarding recontact. MATERIALS AND METHODS: We developed a survey using themes identified from semistructured interviews with oncologists and GCs and administered it in a national sample of oncologists and GCs between July and September 2022. RESULTS: In total, 634 respondents completed the survey including 349 oncologists and 285 GCs. On frequency of recontacting patients with reclassified results, 40% of GCs reported recontacting often compared with 12.5% of oncologists. Neither group reported recording patient preference for recontact on electronic medical record (EMR). Both groups agreed that all reclassified variants, even those that do not affect clinical management, should be returned to patients. They also reported that recontact via EMR messages, mailed letters, and phone calls from GC assistants were more suitable for downgrades. By contrast, face-to-face meetings and phone calls were preferred for upgrades. Remarkably, oncologists were more likely to endorse face-to-face return of results and were more likely to endorse return through a nongenetics provider compared to GCs. CONCLUSION: These data on current recontact practices and opinions provide a foundation for developing guidelines with explicit recommendations on patient recontact that can help maximize clinical effect while considering provider preferences for recontact within resource-constrained genomic practice settings.


Asunto(s)
Consejeros , Oncólogos , Humanos , Deber de Recontacto , Oncogenes , Relevancia Clínica
8.
R I Med J (2013) ; 106(5): 8-11, 2023 Jun 01.
Artículo en Inglés | MEDLINE | ID: mdl-37195154

RESUMEN

Genetic counseling is a relatively young profession that has advanced rapidly over the last 50 years. The term "genetic counseling" was first coined by Sheldon Reed in 1947 to describe the advice he would give to physicians regarding their patient's genetic conditions. Today, more than 5,000 genetic counselors are licensed through the American Board of Genetic Counselors. Clinically, genetic counselors practice in a variety of specialties, including pediatrics, prenatal, neurology and psychiatry; however, oncology remains the most common.1 This article is centered on the most common areas of genetic counseling and addresses the topics of cancer genetic testing, genetic counseling, and explores past and current practices.


Asunto(s)
Consejeros , Neoplasias , Masculino , Embarazo , Femenino , Humanos , Niño , Consejo , Pruebas Genéticas , Asesoramiento Genético , Neoplasias/diagnóstico , Neoplasias/genética
9.
Eur J Hum Genet ; 31(10): 1181-1184, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37142766

RESUMEN

This article seeks to highlight the most recent trends and themes in genetic counseling that are of broad interest. A total of 3505 documents were published between 1952 and 2021, with a trend toward increase in paper/year. The most common documents are original articles (2515, 71.8%), followed by review articles (341, 9.7%). Journal of Genetic Counseling publishes the highest number of genetic counseling articles (587, 16.7%), followed by Clinical Genetics (103, 2.9%) and the South American Journal of Medical Genetics (95, 2.7%). Co-occurrence analysis revealed five research themes: genetic testing, cancer, genetic counselor, prenatal diagnosis, and psychiatry. The genetic counselor theme contained most of the recent keywords, including "covid-19," "underrepresented population," "service delivery models," "workforce," "disparities," "service delivery," "professional development," "cultural competence," "access," "diversity," "telemedicine," and "health literacy." Genetic counseling researchers may use these keywords to find topics pertinent to their future research and practice.


Asunto(s)
COVID-19 , Consejeros , Femenino , Embarazo , Humanos , Asesoramiento Genético , Consejo , Diagnóstico Prenatal
10.
Am Surg ; 89(12): 5842-5849, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37183417

RESUMEN

BACKGROUND: Genetic testing is increasingly utilized in breast cancer patients; however, testing rates remain low. We aimed to evaluate the rate of genetic testing at a tertiary academic medical center utilizing a multidisciplinary clinic model including genetic counselor. METHODS: A single-center retrospective chart review was performed on a cohort of newly diagnosed breast cancer patients from January 2018 through February 2019. Patients were reviewed for genetic screening eligibility, consultation with a genetic counselor, and test results. RESULTS: Final analysis included 426 patients. 261 (61.3%) were found to meet National Comprehensive Cancer Network guidelines for genetic testing, of which 178 patient (68.2%) underwent testing and 32 patients (12.3%) declined testing. Of the 165 not eligible for testing, 5 patients were tested. A total of 183 patients underwent testing and 116 (63.4%) had a negative result, 17 (9.3%) were positive for at least one gene mutation and 50 (27.3%) were identified to have a variant of unknown significance (VUS). There was a positive association between those patients who met with a genetic counselor and eligibility for testing (OR 31.1, 95% CI 16.0-60.5). CONCLUSIONS: Genetic testing result has become an increasingly important factor when defining optimal surgical treatment for breast cancer patients. Increasing the availability of genetic consultation for breast cancer patients can improve testing rates and patient selection.


Asunto(s)
Neoplasias de la Mama , Consejeros , Humanos , Femenino , Neoplasias de la Mama/genética , Neoplasias de la Mama/cirugía , Neoplasias de la Mama/patología , Estudios Retrospectivos , Pruebas Genéticas/métodos , Toma de Decisiones , Células Germinativas/patología , Predisposición Genética a la Enfermedad
11.
J Addict Nurs ; 34(1): 8-15, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36857543

RESUMEN

ABSTRACT: The purpose of this study was to explore the determinants of self-reported smoking cessation among out-of-school Korean adolescents who participated in a counselor-visiting smoking cessation program. This retrospective descriptive study analyzed data from the Korea Health Promotion Institute. Participants were enrolled between June 1, 2015, and December 31, 2017, at a regional smoking cessation center in a counselor-visiting smoking cessation program for out-of-school adolescents. Participants consisted of 807 adolescents (70.3% male) with a mean age of 16.9 ± 1.2 years. Multiple logistic regression analysis showed that female gender (OR = 1.54-1.92), cohort year 2016 (OR = 1.69-1.90), smoking more than half a pack a day (OR = 0.44-0.50), strong motivation to quit (OR = 1.44), and number of counseling in person (OR = 1.97-2.10) were statistically significant independent contributors to quitting, based on follow-up assessments at 4 weeks, 12 weeks, and 6 months. This study explored smoking cessation outcomes of a government-driven smoking cessation program that targeted out-of-school adolescents and identified several risk factors that affect a successful outcome. More research is necessary to evaluate the efficacy of such smoking cessation programs for marginalized or understudied populations.


Asunto(s)
Consejeros , Cese del Hábito de Fumar , Adolescente , Femenino , Masculino , Humanos , Estudios Retrospectivos , Factores Sexuales , República de Corea
12.
J Genet Couns ; 32(6): 1222-1225, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-36924062

RESUMEN

Using a traditional lecture format alone often limits students' opportunities to engage with and apply the concepts taught in a classroom. This report describes the design, curricular implementation, and application of an innovative educational escape room as an active learning tool for genetic counselor educators to teach cancer risk assessment skills. A Cancer Risk Assessment Escape Room is a novel way to offer experiential learning and to assess a learner's critical thinking and ability to apply cancer risk assessment models to evolving clinical scenarios. This successful implementation of an interactive escape room can be adapted to other genetic counseling competencies. The use of an escape room allows learners to actively engage in and apply content taught in lectures before entering clinical internships.


Asunto(s)
Consejeros , Neoplasias , Humanos , Neoplasias/diagnóstico , Estudiantes , Encuestas y Cuestionarios , Medición de Riesgo
13.
J Genet Couns ; 32(3): 706-716, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36747331

RESUMEN

Research suggests variants of uncertain significance (VUSs) present a variety of challenges for genetic counselors (GCs), nongenetics clinicians, and patients. Multigene cancer panels reveal more VUSs than single gene testing as a result of the increase in the number of genes being tested. This study surveyed 87 clinical cancer GCs involved with direct patient care and 19 laboratory GCs who provide guidance to clinicians regarding genetic test results about their attitudes on various options for the reporting of VUSs by laboratories for broad multigene cancer panels. Independent samples t-tests were utilized to compare the two groups. Based on a six-point Likert-type scale (1 = Strongly Disagree to 6 = Strongly Agree), clinical cancer GCs (M = 5.4; SD = 0.8) and laboratory GCs (M = 5.2; SD = 0.9) agreed overall that VUSs should be reported (p = 0.44; Cohen's d = 0.21). When asked about specific reporting options, both clinical cancer GCs (M = 1.9; SD = 1.1) and laboratory GCs (M = 2.1; SD = 1.4) disagreed that VUSs should be reported only for genes related to the indication for testing (p = 0.50; Cohen's d = 0.17). Overall, most GCs felt clinicians should not choose whether VUSs should be reported on genetic test results, with clinical cancer GCs (M = 1.9; SD = 1.3) feeling more strongly against it than laboratory GCs (M = 3.1; SD = 1.4; p = 0.002; Cohen's d = 0.88). Generally, GCs were more in favor of VUSs not being reported for population-based screening, with laboratory GCs (M = 4.7; SD = 0.8) agreeing more with that practice than clinical cancer GCs (M = 3.7; SD = 1.4; p = 0.001; Cohen's d = 0.80). Both clinical cancer GCs (M = 4.1; SD = 1.2) and laboratory GCs (M = 3.9; SD = 1.2) agreed additional guidelines on how to approach VUSs in clinical practice should be developed (p = 0.54; Cohen's d = 0.17). While most GCs supported the reporting of VUSs overall, our analyses suggest clinical cancer and laboratory GCs may have different attitudes toward specific VUS-related reporting options. Further research is needed to elucidate GC preferences to help inform best practices for the reporting of VUSs. The development of additional standardized guidelines on how to approach VUSs would further support clinical practice.


Asunto(s)
Consejeros , Neoplasias , Humanos , Laboratorios , Pruebas Genéticas/métodos , Actitud , Predisposición Genética a la Enfermedad
14.
J Genet Couns ; 32(4): 857-869, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-36843230

RESUMEN

Difficult news has been described as any news that adversely and seriously affects an individual's view of their future. Research in oncology genetic counseling demonstrated that individuals do not prefer in-person or telephone delivery of their genetic test results. However, in the prenatal setting, there is limited research examining how patients prefer news related to their pregnancies be disclosed. This study aimed to assess the experiences and preferences of prenatal patients who received difficult news by telephone. A semi-structured interview guide was developed to assess patients' personal definitions of difficult news and their experiences receiving the news by telephone. Fifteen patients seen prenatally by a genetic counselor were interviewed. Interviews were transcribed and consensus-coded, using inductive content analysis to identify several themes. The most common definition of difficult news included unexpected, life-changing, or devastating information. Participants described aspects of their experience and strategies employed by their genetic counselor that was helpful when receiving the news, which was found to align with the SPIKES protocol, a six-step process of delivering difficult news to patients. Additional techniques that participants identified as beneficial and satisfactory included the genetic counselor's use of empathy, non-directiveness, and continuity and coordination of care. Participants also provided recommendations for improvement, including a discussion of the mode of result disclosure during pretest counseling, an option to follow up with their genetic counselor, personalized resources, and a summary of the results call. The findings of this study demonstrate that a patient-centered approach is preferred by patients who receive difficult news by telephone in the prenatal setting. Patients' identification of beneficial communication techniques and suggestions for improvement can be implemented by any healthcare provider responsible for delivering difficult news to prenatal patients.


Asunto(s)
Consejeros , Asesoramiento Genético , Embarazo , Femenino , Humanos , Asesoramiento Genético/métodos , Revelación , Personal de Salud , Consejeros/psicología , Teléfono
15.
J Genet Couns ; 32(3): 685-697, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36806333

RESUMEN

We defined orienting language in genetic counseling sessions as 'language intended to direct focus to a particular aspect of the counseling process; a physical, emotional, or cognitive space; or an outcome'. This is a concept expanding on the idea of 'orientation' statements in the genetic counseling literature. We propose that orienting language is an important component of effective communication in the genetic counseling process. Our goals were to document the presence of orienting language in genetic counseling sessions with practicing genetic counselors and simulated clients, categorize types of orienting language, and evaluate the purpose of this language. A sample of Genetic Counseling Video Project videotape transcripts was evaluated through consensus coding for orienting language. Orienting language was found to be abundant in the dataset evaluated. Each excerpt was coded for orienting language Strategies and Purpose. The six categories of Strategy codes identified were Logical Consistency, Providing Context, Guidance, Structuring the Session, Anchoring, and Procedural. The six categories of Purpose codes were Counselee Understanding, Guidance, Engagement, Promoting Effective Counselor/Counselee Interactions, Counselee Adaptation, and Relationship Building. Results support our expanded definition of orienting language, which was similar in both cancer and prenatal specialties and across years of counselor experience. Orienting language acts as a series of signposts to help clients navigate the sometimes complex and unfamiliar territory of a genetic counseling session. The introduction of this term into the genetic counseling literature allows its use by genetic counselors to be further evaluated and potentially incorporated into genetic counselor training.


Asunto(s)
Consejeros , Neoplasias , Femenino , Embarazo , Humanos , Asesoramiento Genético/psicología , Consejo , Lenguaje , Emociones , Neoplasias/genética
16.
J Genet Couns ; 32(3): 656-662, 2023 06.
Artículo en Inglés | MEDLINE | ID: mdl-36617522

RESUMEN

Improving efficiency of genetic counseling can allow genetic counselors to see more patients, increasing access to this valuable service. However, the patient experience should be carefully considered as changes are made, so that quality is not sacrificed. The primary outcome of this study was time in session with a board-certified genetic counselor at baseline (T0), after the addition of a genetic counseling assistant (GCA) (T1). The secondary outcome was the patient experience, which was collected from an electronic survey sent three days after the genetic counseling session. A total of 689 appointments were evaluated over 12 months; 291 in T0 by two genetic counselors (Jan-June 2019), 398 in T1 by two genetic counselors (August 2019-Jan 2020). The overall genetic counseling median appointment time decreased by 10 min in T1 (p < 0.001), and the median amount of time spent on post-session activities by the two genetic counselors decreased by 15 min (p < 0.001). There was an increase in the average number of patients seen per FTE per month from 24.3 in T0 to 33.2 in T1. There was no difference in overall patient experience from T0 to T1 (p = 0.3). There was high patient satisfaction, including with the amount of time spent in a session during both time periods (p = 0.63). This study found decreased appointment time with the addition of a GCA in a single clinic without impacting patient experience.


Asunto(s)
Consejeros , Neoplasias , Humanos , Asesoramiento Genético , Predisposición Genética a la Enfermedad , Evaluación del Resultado de la Atención al Paciente , Consejo
17.
J Genet Couns ; 32(2): 486-494, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36458380

RESUMEN

Cystic fibrosis (CF), a genetic disease and chronic illness, affects multiple organ systems and requires exceptional medical care and treatment. Few studies have assessed the diagnosis disclosure process to well children when their sibling(s) have CF, and none have evaluated the association between parental knowledge of CF and the disclosure of CF. The objectives of this study were to assess parental understanding of CF, demonstrate the most commonly shared topics and their frequencies of discussion with well children, and identify associations between parental understanding of CF and aspects of the disclosure process to well children. Parents were recruited from CF support organizations and asked to complete an online, anonymous survey. Individuals were eligible to participate in the study if they had at least one living child with CF and at least one living child without CF. Completed surveys from 48 individuals revealed that most parents began discussing a sibling's diagnosis of CF with the first-born well child at 5.4 years old. Topics related to CF were discussed openly and as needed with their well children (n = 44). The most frequently discussed topic, and the topic ranked most important (1.93 of 5, SD: 1.17) by 40 participants (90.9%), was medical concerns and treatment for CF. Fewer parents (n = 18, 40.9%) reported discussing the financial impact of CF, and many ranked this as least important to share (4.64 of 5, SD: 0.75). The CF knowledge assessment revealed that participants were well-informed about CF, with a mean total score of 8.9/10 (SD: 0.91). There were no associations between CF knowledge assessment scores, education level, income, and the topics discussed with well children. These results can be utilized by genetic counselors and other healthcare specialists in discussion with parents about the disclosure process of a diagnosis of CF to well children.


Asunto(s)
Consejeros , Fibrosis Quística , Humanos , Niño , Preescolar , Fibrosis Quística/diagnóstico , Fibrosis Quística/genética , Revelación , Padres/educación , Encuestas y Cuestionarios
18.
São Luís; s.n; 1; 20221207. 31 p. ilus.
No convencional en Portugués | LILACS, CONASS, Coleciona SUS, SES-MA | ID: biblio-1401610

RESUMEN

Esta cartilha é resultado de uma parceria entre o Conselho Estadual de Saúde do Maranhão e o projeto de pesquisa intitulado "Controle social no estado do Maranhão: perfil dos conselhos", financiado pelo Edital nº 07/2021 da Fundação de Amparo à Pesquisa e ao Desenvolvimento Científico e Tecnológico do Maranhão (FAPEMA), e o Projeto Institucional de Bolsas de Iniciação Científica (PIBIC) da Universidade Federal do Maranhão (UFMA), cujo título é "Produção de recurso educativo para o fortalecimento de ações do controle social do estado do Maranhão", cuja coordenação e vice coordenação é feita pela Dra Judith Rafaelle Oliveira Pinho e Dra Paola Trindade Garcia, respectivamente. O objetivo dessa parceria é entregar um material didático com linguagem clara e objetiva acerca da organização e do funcionamento dos Conselhos de Saúde com base na Resolução N° 453 de 10 de maio de 2012. Portanto, este material é de acesso a todas as pessoas que tenham interesse em conhecer e compreender, de forma simplificada tal resolução, principalmente os conselheiros de saúde.


Asunto(s)
Humanos , Control Social Formal , Políticas, Planificación y Administración en Salud , Salud , Consejos de Salud , Consejeros , Investigación , Materiales de Enseñanza , Organizaciones
19.
Front Public Health ; 10: 932213, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36203706

RESUMEN

Background: The Taiwanese military trains smoking cessation counselors to counsel officers and soldiers on quitting smoking as part time. The intention to stay among smoking cessation counselors affects the promotion of smoking cessation. This study investigated smoking cessation counselors' intention to stay by applying a conceptual model of intent to stay (CMIS) to analyze influencing factors. Methods: In this cross-sectional study, we applied the CMIS to design a questionnaire. We invited 577 smoking cessation counselors trained in the military from 2016 to 2017. The response rate was 46.7%, and the questionnaire responses of 260 military smoking cessation counselors were analyzed. We used path analysis to verify the relationships among the various aspects of the CMIS. Results: We determined that smoking cessation counselors' intention to stay is directly affected by job satisfaction (ß = 0.150, p = 0.014), job stress (ß = -0.225, p < 0.001), and institutional identification (ß = 0.431, p < 0.001). Career opportunities indirectly affect intention to stay through institutional identification, working environment indirectly affects intention to stay through job stress, and co-worker support and self-fulfillment indirectly affect intention to stay through job satisfaction and institutional identification. Our model could explain 36.7% of the variance in intent to stay among smoking cessation counselors. Conclusion: Our results suggest that relevant policies should be formulated to enhance smoking cessation counselors' recognition, affirmation, and sense of belonging as related to smoking cessation counseling work, thereby raising their institutional identification and promoting their intention to stay.


Asunto(s)
Consejeros , Estrés Laboral , Cese del Hábito de Fumar , Consejeros/psicología , Estudios Transversales , Humanos , Intención , Cese del Hábito de Fumar/métodos , Cese del Hábito de Fumar/psicología
20.
J Genet Couns ; 31(6): 1394-1403, 2022 12.
Artículo en Inglés | MEDLINE | ID: mdl-35900261

RESUMEN

Multi-cancer gene panels for hereditary cancer syndromes (hereditary cancer panels, HCPs) are widely available, and some laboratories have programs that limit patients' out-of-pocket (OOP) cost share. However, little is known about practices by cancer genetic counselors for discussing and ordering an HCP and how insurance reimbursement and patient out-of-pocket share impact these practices. We conducted a survey of cancer genetic counselors based in the United States through the National Society of Genetic Counselors to assess the impact of reimbursement and patient OOP share on ordering of an HCP and hereditary cancer genetic counseling. Data analyses were conducted using chi-square and t tests. We received 135 responses (16% response rate). We found that the vast majority of respondents (94%, 127/135) ordered an HCP for patients rather than single-gene tests to assess hereditary cancer predisposition. Two-thirds of respondents reported that their institution had no protocol related to discussing HCPs with patients. Most respondents (84%, 114/135) indicated clinical indications and patients' requests as important in selecting and ordering HCPs, while 42%, 57/135, considered reimbursement and patient OOP share factors important. We found statistically significant differences in reporting of insurance as a frequently used payment method for HCPs and in-person genetic counseling (84% versus 59%, respectively, p < 0.0001). Perceived patient willingness to pay more than $100 was significantly higher for HCPs than for genetic counseling(41% versus 22%, respectively, p < 0.01). In sum, genetic counselors' widespread selection and ordering of HCPs is driven more by clinical indications and patient preferences than payment considerations. Respondents perceived that testing is more often reimbursed by insurance than genetic counseling, and patients are more willing to pay for an HCP than for genetic counseling. Policy efforts should address this incongruence in reimbursement and patient OOP share. Patient-centered communication should educate patients on the benefit of genetic counseling.


Asunto(s)
Consejeros , Síndromes Neoplásicos Hereditarios , Humanos , Estados Unidos , Predisposición Genética a la Enfermedad , Pruebas Genéticas , Gastos en Salud , Asesoramiento Genético/psicología , Encuestas y Cuestionarios , Genes Relacionados con las Neoplasias
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