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1.
Telemed J E Health ; 2024 Apr 04.
Artículo en Inglés | MEDLINE | ID: mdl-38574250

RESUMEN

Background: Tele-oncology became a widely used tool during the COVID-19 pandemic, but there was limited understanding of how patient-clinician communication occurred using the technology. Our goal was to identify how communication transpired during tele-oncology consultations compared with in-person appointments. Methods: A convergent parallel mixed-method design was utilized for the web-based survey, and follow-up interviews were conducted with cancer patients from March to December 2020. Participants were recruited from the University of Florida Health Cancer Center and two national cancer organizations. During the survey, participants rated their clinician's patient-centered communication behaviors. Open-ended survey responses and interview data were combined and analyzed thematically using the constant comparative method. Results: A total of 158 participants completed the survey, and 33 completed an interview. Ages ranged from 19 to 88 years (mean = 64.2; standard deviation = 13.0); 53.2% identified as female and 44.9% as male. The majority of respondents (76%) considered communication in tele-oncology equal to in-person visits. Preferences for tele-oncology included the ability to get information from the clinician, with 13.5% rating tele-oncology as better than in-person appointments. Tele-oncology was considered worse than in-person appointments for eye contact (n = 21, 12.4%) and virtual waiting room times (n = 50, 29.4%). The following qualitative themes corresponded with several quantitative variables: (1) commensurate to in-person appointments, (2) uncertainty with the digital platform, (3) lack of a personal connection, and (4) enhanced patient experience. Conclusion: Patient-centered communication behaviors were mostly viewed as equally prevalent during tele-oncology and in-person appointments. Addressing the challenges of tele-oncology is necessary to improve the patient experience.

2.
BMC Health Serv Res ; 23(1): 340, 2023 Apr 05.
Artículo en Inglés | MEDLINE | ID: mdl-37020233

RESUMEN

BACKGROUND: This project aimed to optimize communication strategies to support family communication about familial hypercholesterolemia (FH) and improve cascade testing uptake among at-risk relatives. Individuals and families with FH provided feedback on multiple strategies including: a family letter, digital tools, and direct contact. METHODS: Feedback from participants was collected via dyadic interviews (n = 11) and surveys (n = 98) on communication strategies and their proposed implementation to improve cascade testing uptake. We conducted a thematic analysis to identify how to optimize each strategy. We categorized optimizations and their implementation within the project's healthcare system using a Traffic Light approach. RESULTS: Thematic analysis resulted in four distinct suggested optimizations for each communication strategy and seven suggested optimizations that were suitable across all strategies. Four suggestions for developing a comprehensive cascade testing program, which would offer all optimized communication strategies also emerged. All optimized suggestions coded green (n = 21) were incorporated. Suggestions coded yellow (n = 12) were partially incorporated. Only two suggestions were coded red and could not be incorporated. CONCLUSIONS: This project demonstrates how to collect and analyze stakeholder feedback for program design. We identified feasible suggested optimizations, resulting in communication strategies that are patient-informed and patient-centered. Optimized strategies were implemented in a comprehensive cascade testing program.


Asunto(s)
Hiperlipoproteinemia Tipo II , Humanos , Comunicación , Pacientes , Pruebas Genéticas
3.
Psychooncology ; 31(7): 1212-1220, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-35218278

RESUMEN

OBJECTIVE: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS). METHOD: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI). RESULTS: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (ß = -0.11, p < 0.001), as well as cancer openness and avoidance (ß = -0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (ß = 0.08, p < 0.01) and SS (ß = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (ß = 0.71, p < 0.05). CONCLUSIONS: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.


Asunto(s)
Carga del Cuidador , Comunicación , Neoplasias Hematológicas , Relaciones Interpersonales , Adulto , Hijos Adultos , Cuidadores , Familia , Neoplasias Hematológicas/terapia , Humanos , Apoyo Social , Encuestas y Cuestionarios
4.
BMC Public Health ; 22(1): 2339, 2022 12 13.
Artículo en Inglés | MEDLINE | ID: mdl-36514047

RESUMEN

BACKGROUND: The spread of unvetted scientific information about COVID-19 presents a significant challenge to public health, adding to the urgency for increased understanding of COVID-19 information-seeking preferences that will allow for the delivery of evidence-based health communication. This study examined factors associated with COVID-19 information-seeking behavior. METHODS: An online survey was conducted with US adults (N = 1800) to identify key interpersonal (e.g., friends, health care providers) and mediated (e.g., TV, social media) sources of COVID-19 information. Logistic regression models were fitted to explore correlates of information-seeking. RESULTS: Study findings show that the first sought and most trusted sources of COVID-19 information had different relationships with sociodemographic characteristics, perceived discrimination, and self-efficacy. Older adults had greater odds of seeking information from print materials (e.g., newspapers and magazines) and TV first. Participants with less educational attainment and greater self-efficacy preferred interpersonal sources first, with notably less preference for mass media compared to health care providers. Those with more experiences with discrimination were more likely to seek information from friends, relatives, and co-workers. Additionally, greater self-efficacy was related to increased trust in interpersonal sources. CONCLUSION: Study results have implications for tailoring health communication strategies to reach specific subgroups, including those more vulnerable to severe illness from COVID-19. A set of recommendations are provided to assist in campaign development.


Asunto(s)
COVID-19 , Comunicación en Salud , Humanos , Anciano , Pandemias , COVID-19/epidemiología , Infodemia , Conducta en la Búsqueda de Información , Encuestas y Cuestionarios
5.
J Genet Couns ; 31(5): 1219-1230, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-35616645

RESUMEN

Successful proband-mediated family communication and subsequent cascade genetic testing uptake requires interventions that present information clearly, in sufficient detail, and with medical authority. To facilitate family communication for patients receiving clinically actionable results via the MyCode® Community Health Initiative, a Family Sharing Tool (FST) and a cascade chatbot were developed. FST is an electronic mechanism allowing patients to share genetic test results with relatives via chatbot. The cascade chatbot describes the proband's result, associated disease risks, and recommended management and captures whether the user is a blood relative or caregiver, sex, and relationship to the proband. FST and cascade chatbot uptake among MyCode® probands and relatives was tracked from August 2018 through February 2020. Cascade genetic testing uptake was collected from testing laboratories as number of cascades per proband. Fifty-eight percent (316/543) of probands consented to FST; 42% (227/543) declined. Receipt preferences were patient electronic health record (EHR) portal (52%), email (29%), and text (19%). Patient EHR portal users (p < 0.001) and younger patients were more likely to consent (p < 0.001). FST was deployed to 308 probands. Fifty-nine percent (183/308) opened; of those, 56% (102/183) used FST to send a cascade chatbot to relatives. These 102 probands shared a cascade chatbot with 377 relatives. Sixty-two percent (235/377) of relatives opened; of these, 69% (161/235) started, and of these, 57% (92/161) completed the cascade chatbot. Cascade genetic testing uptake was significantly greater among relatives of probands who consented to the FST (M = 2.34 cascades, SD = 2.10) than relatives of probands who declined (M = 1.40 cascades, SD = 0.82, p < 0.001). Proband age was not a significant predictor of cascade genetic testing uptake. Further work is needed to better understand factors impacting proband use of FST and relative use of cascade chatbots.


Asunto(s)
Familia , Pruebas Genéticas , Comunicación , Humanos , Salud Pública , Programas Informáticos
6.
J Genet Couns ; 31(2): 447-458, 2022 04.
Artículo en Inglés | MEDLINE | ID: mdl-34665896

RESUMEN

The public health impact of genomic screening can be enhanced by cascade testing. However, cascade testing depends on communication of results to family members. While the barriers and facilitators of family communication have been researched following clinical genetic testing, the factors impacting the dissemination of genomic screening results are unknown. Using the pragmatic Electronic Medical Records and Genomics Network-3 (eMERGE-3) study, we explored the reported sharing practices of participants who underwent genomic screening across the United States. Six eMERGE-3 sites returned genomic screening results for mostly dominant medically actionable disorders and surveyed adult participants regarding communication of results with first-degree relatives. Across the sites, 279 participants completed a 1-month and/or 6-month post-results survey. By 6 months, only 34% of the 156 respondents shared their results with all first-degree relatives and 4% did not share with any. Over a third (39%) first-degree relatives were not notified of the results. Half (53%) of participants who received their results from a genetics provider shared them with all first-degree relatives compared with 11% of participants who received their results from a non-genetics provider. The most frequent reasons for sharing were a feeling of obligation (72%) and that the information could help family members make medical decisions (72%). The most common reasons indicated for not sharing were that the family members were too young (38%), or they were not in contact (25%) or not close to them (25%). These data indicate that the professional returning the results may impact sharing patterns, suggesting that there is a need to continue to educate healthcare providers regarding approaches to facilitate sharing of genetic results within families. Finally, these data suggest that interventions to increase sharing may be universally effective regardless of the origin of the genetic result.


Asunto(s)
Familia , Genómica , Comunicación , Pruebas Genéticas/métodos , Humanos , Encuestas y Cuestionarios , Estados Unidos
7.
Qual Health Res ; 32(8-9): 1230-1245, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-35621326

RESUMEN

The management of uncertainty is integral to health and illness. Individuals manage uncertainty about their health through communication enmeshed in family systems, but existing theorizing focuses on individuals without accounting for family processes. An iterative qualitative analysis of 42 dyadic, family interviews (N = 84) revealed (a) moments in the context of hereditary cancer that involved individual-centered and familial uncertainty appraisal and management, (b) family members' communication strategies to prompt relatives to engage familial uncertainty, and (c) the communicative (re)creation and negotiation of family models for uncertainty management. The findings illuminate tensions that individuals encounter across their lifespan as they appraise and manage uncertainty about hereditary cancer risks. This study extends uncertainty management theory to encompass familial uncertainty management and contributes insights useful for the management of hereditary cancer.


Asunto(s)
Predisposición Genética a la Enfermedad , Neoplasias , Comunicación , Familia , Humanos , Motivación , Neoplasias/genética , Neoplasias/terapia , Incertidumbre
8.
Telemed J E Health ; 28(7): 1028-1034, 2022 07.
Artículo en Inglés | MEDLINE | ID: mdl-34767741

RESUMEN

Background: Coronavirus disease 2019 (COVID-19) immediately impacted patient-clinician communication, particularly in the oncology setting. Relatedly, secure messaging (SM) usage greatly increased, yet it is unknown what was discussed and whether the technology was utilized to disseminate information. Aims: This study aimed at identifying the most frequently discussed topics using SM as well as at understanding how the communication process transpired during the early stages of the pandemic. Materials and Methods: A mixed-methods design was utilized, consisting of a content analysis of more than 4,200 secure messages, aggregated into 1,454 patient-clinician discussions. Data were collected from February 2020 to May 2020. Discussions were from various oncology departments and included physicians, physician assistants, and nurses. Based on the identified categories, a thematic analysis was conducted to understand the nuances occurring within discussions. Results: Out of the 1,454 discussions, 26% (n = 373) related to COVID-19. Of the COVID-19 discussion, the most frequently coded category was "changes, adjustments, and re-arranging care" (65%, n = 241), followed by "risk for COVID-19" (24%, n = 90), "precautions inside the hospital" (18%, n = 66), and "precautions outside the hospital" (14%, n = 52). Natural language processing techniques were used to confirm the validity of the results. Thematic analysis revealed that patients were proactive in rescheduling appointments, expressed anxiety about being immunocompromised, and clinicians were uncertain about providing recommendations related to COVID-19. Conclusions: The COVID-19 outbreak revealed the need for responsive and effective public health communication. The SM can disseminate information from trusted sources, clinicians, but can be better utilized to deliver tailored information for specific patient populations.


Asunto(s)
COVID-19 , Médicos , COVID-19/epidemiología , Comunicación , Humanos , Pandemias
9.
J Genet Couns ; 29(6): 936-948, 2020 12.
Artículo en Inglés | MEDLINE | ID: mdl-31970844

RESUMEN

Family communication about the family's health history (FHH) is an important step in alerting individuals to their hereditary disease risks and facilitating prevention. Individuals often communicate about the FHH of hereditary cancer as a story, which highlights the importance of analyzing family narratives of hereditary cancer to better understand their relation to psychological and physical well-being. This study investigates the content of family stories by examining how narrative tone and framing relate to coping, perceptions of risk, and medical decision-making. The current study recruited 42 family dyads with a prevalent FHH of hereditary cancer to participate in dyadic phone interviews to jointly tell their family narrative of hereditary cancer. Using an iterative analysis, findings examine how families create a shared understanding of FHH and hereditary risk. Narrative tone reflects participants' psychological well-being and contributed to the way families framed their experiences. Common frames to family narratives of hereditary cancer included empowerment, adversity, laissez faire, and discrepant. Each frame gave insight into how families were coping, their perceptions of risk, and how they make medical decisions to manage those risks. Developing a better understanding of how families communicate about their hereditary cancer risks can aid in designing clinical interventions to help families re-frame their stories to promote improved health outcomes.


Asunto(s)
Familia/psicología , Predisposición Genética a la Enfermedad , Narración , Neoplasias/genética , Adaptación Psicológica , Adolescente , Adulto , Anciano , Comunicación , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores de Riesgo , Adulto Joven
10.
J Health Commun ; 25(2): 180-189, 2020 02 01.
Artículo en Inglés | MEDLINE | ID: mdl-32116144

RESUMEN

This study investigates patient perceptions of patient-provider communication and family communication patterns theory (FCPT). Using FCPT, the study predicts that family communicative environment relates to patient perceptions of patient involvement in care as well as patient satisfaction and medical adherence. Further, this study tests new measures of conformity orientation (warm and cold conformity) to investigate the multi-faceted nature of the variable. The results show significant relationships between FCPT and patient perceptions and outcomes. Specifically, warm conformity was the strongest and most reliable predictor of patient perceptions and outcomes across the three FCPT variables tested in the model. Additionally, results show differences between how warm and cold conformity predict patient perception and outcome variables. Finally, tests of the interaction between conversation orientation and both types of conformity indicate relationships between interaction variables and patient involvement in care, but not satisfaction or adherence. Practical implications and future research ideas are also discussed.


Asunto(s)
Disentimientos y Disputas , Relaciones Familiares , Aceptación de la Atención de Salud , Satisfacción del Paciente , Adolescente , Adulto , Anciano , Comunicación , Femenino , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Participación del Paciente , Percepción , Adulto Joven
11.
Health Commun ; 34(9): 1010-1020, 2019 08.
Artículo en Inglés | MEDLINE | ID: mdl-29565677

RESUMEN

This study explored how young adult women manage privacy regarding their health information as dependents on a parent's insurance policy. Under current and proposed health care reform in the United States, young adults between the ages of 18 and 26 years can remain on a parent's policy as a dependent, which can improve young adult's access to health care services. Although dependent expansion provisions can improve coverage for young adults, it may also threaten their privacy by giving a parent access to adult-child's private health information. Using Communication Privacy Management, this study investigated how dependent young adult women conceptualize and negotiate information ownership with parents in a forced disclosure situation. Results revealed young adult women either felt they alone should own and control their health information or believed a parent as the policy hold should have access to the information. However, all preferred to be in control of the disclosure and used core and catalyst criteria to manage the privacy dilemma current health care policy creates. Specifically, the threat of a parent seeing an adult-child used a stigmatized health service motivated young adult women to engage in deception, pay out of pocket for services covered by insurance, and put off or avoid health care. Results of this study complicate assumptions about privacy management and demonstrate how health care policy affects family communication.


Asunto(s)
Acceso a la Información/psicología , Confidencialidad/psicología , Relaciones Padres-Hijo , Adolescente , Adulto , Comunicación , Femenino , Humanos , Cobertura del Seguro , Seguro de Salud , Propiedad , Padres , Autorrevelación , Adulto Joven
12.
J Genet Couns ; 27(6): 1417-1427, 2018 12.
Artículo en Inglés | MEDLINE | ID: mdl-29971606

RESUMEN

Men with a germline pathogenic BRCA1 or BRCA2 variant have increased risks for developing breast, pancreatic, prostate, and melanoma cancers, but little is known about how they understand and manage their cancer risks. This study examines how men with BRCA-related cancer risks manage uncertainty and information about their risks. Twenty-five men who were either a BRCA carrier or have a BRCA-positive first-degree family member that put the participant at 50% chance of also being a BRCA carrier were interviewed for this study. Using uncertainty management theory as a theoretical framework, this study demonstrates that men manage uncertainty by seeking information from female family members, websites, and healthcare providers, and are under-informed about their cancer risks. Further, in handling their information, men prefer information about cancer risk percentages and screening recommendations in the form of lists presented to them via websites, printed literature, proactive healthcare providers, and an identifiable male spokesperson. Finally, men used BRCA-related cancer risk information to make decisions about whether or not to engage in screening and prevention, manage their BRCA-related cancer risks, and overall family well-being-yet often at the expense of their own individual risks. Implications for genetic counseling and family conversations are discussed.


Asunto(s)
Proteína BRCA1 , Proteína BRCA2 , Neoplasias de la Mama/genética , Asesoramiento Genético/psicología , Pruebas Genéticas , Conocimientos, Actitudes y Práctica en Salud , Incertidumbre , Adulto , Anciano , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven
13.
PEC Innov ; 3: 100198, 2023 Dec 15.
Artículo en Inglés | MEDLINE | ID: mdl-37662692

RESUMEN

Rationale: Parents of a child or adolescent (CA) or young adult (YA) diagnosed with a hematologic cancer often face uncertainty. Managing uncertainty is critical to reduce the psychosocial burden of illness-related stressors. Objective: This study sought to identify: 1) sources of uncertainty among parents of a child diagnosed with a hematologic cancer, 2) strategies used by parents to manage uncertainty, and 3) clinicians' responses to parents' online information-seeking approach to managing uncertainty. Methods: Parents of CAs/YAs diagnosed with a hematologic cancer within the past 1-18 months and living in the U.S. participated in an in-depth, semi-structured phone interview (n = 20). Data were analyzed thematically. Results: Parents reported uncertainty about treatment (options, efficacy, and side effects or risks) and uncertainty about the future (recurrence, whether worry would subside, and how to approach the child's future). Parents managed uncertainty by seeking information online, talking to clinicians, and joining support groups. Clinicians' responses to online information-seeking were described as supportive and unsupportive. Conclusion: Parents described struggling with uncertainty across the cancer continuum (from primary treatment to survivorship). Parents' psychosocial health may benefit from individual and systems level interventions that help address and manage uncertainty, especially interventions focusing on parent caregiver-clinician communication.

14.
Cancers (Basel) ; 15(15)2023 Jul 29.
Artículo en Inglés | MEDLINE | ID: mdl-37568680

RESUMEN

For many diagnosed mothers and their daughters, breast cancer is a shared experience. However, they struggle to talk about cancer. This is particularly true when the daughter is in adolescence or young adulthood, as they tend to be more avoidant, which is associated with poorer biopsychosocial outcomes. When daughters are their mother's caregivers, daughters' burden and distress are heightened. Young adult caregiving daughters (YACDs) are the second most common family caregiver and encounter more distress and burden than other caregiver types. Yet, YACDs and their diagnosed mothers receive no guidance on how to talk about cancer. Thirty-nine mother/YACD pairs participated in an online survey to identify challenging topics and strategies for talking about cancer, and to explore associations between openness/avoidance and psychosocial outcomes. YACDs and mothers reported the same challenging topics (death, treatment-related issues, negative emotions, relational challenges, YACDs' disease risk) but differed on why they avoided the topic. YACDs and mothers identified the same helpful approaches to navigate conversations (openness, staying positive, third-party involvement, avoidance). Avoidance was correlated with more distress whereas openness was correlated with better psychosocial outcomes. These results provide a psychosocial map for a mother-YACD communication skills intervention, which is key to promoting healthy outcomes.

15.
PEC Innov ; 2: 100134, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37214500

RESUMEN

Objective: To assess use of two web-based conversational agents, the Family Sharing Chatbot (FSC) and One Month Chatbot (OMC), by individuals with familial hypercholesterolemia (FH). Methods: FSC and OMC were sent using an opt-out methodology to a cohort of individuals receiving a FH genetic result. Data from 7/1/2021 through 5/12/2022 was obtained from the electronic health record and the chatbots' HIPAA-secure web portal. Results: Of 175 subjects, 21 (12%) opted out of the chatbots. Older individuals were more likely to opt out. Most (91/154, 59%) preferred receiving chatbots via the patient EHR portal. Seventy-five individuals (49%) clicked the FSC link, 62 (40%) interacted, and 36 (23%) shared a chatbot about their FH result with at least one relative. Ninety-two of the subjects received OMC, 22 (23%) clicked the link and 20 (21%) interacted. Individuals who shared were majority female and younger on average than the overall cohort. Reminders tended to increase engagement. Conclusion: Results demonstrate characteristics relevant to chatbot engagement. Individuals may be more inclined to receive chatbots if integrated within the patient EHR portal. Frequent reminders can potentially improve chatbot utilization. Innovation: FSC and OMC employ innovative digital health technology that can facilitate family communication about hereditary conditions.

16.
Front Health Serv ; 3: 1104311, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37188259

RESUMEN

Introduction: Familial hypercholesterolemia (FH) is a common inherited cholesterol disorder that, without early intervention, leads to premature cardiovascular disease. Multilevel strategies that target all components of FH care including identification, cascade testing, and management are needed to address gaps that exist in FH care. We utilized intervention mapping, a systematic implementation science approach, to identify and match strategies to existing barriers and develop programs to improve FH care. Methods: Data were collected utilizing two methods: a scoping review of published literature, related to any component of FH care, and a parallel mixed method study using interviews and surveys. The scientific literature was searched using key words including "barriers" or "facilitators" and "familial hypercholesterolemia" from inception to December 1, 2021. The parallel mixed method study recruited individuals and families with FH to participate in either dyadic interviews (N = 11 dyads/22 individuals) or online surveys (N = 98 respondents). Data generated from the scoping review, dyadic interviews, and online surveys were used in the 6-step intervention mapping process. Steps 1-3 included a needs assessment, development of program outcomes and creation of evidence-based implementation strategies. Steps 4-6 included program development, implementation, and evaluation of implementation strategies. Results: In steps 1-3, a needs assessment found barriers to FH care included underdiagnosis of the condition which led to suboptimal management due to a myriad of determinants including knowledge gaps, negative attitudes, and risk misperceptions by individuals with FH and clinicians. Literature review highlighted barriers to FH care at the health system level, notably the relative lack of genetic testing resources and infrastructure needed to support FH diagnosis and treatment. Examples of strategies to overcome identified barriers included development of multidisciplinary care teams and educational programs. In steps 4-6, an NHLBI-funded study, the Collaborative Approach to Reach Everyone with FH (CARE-FH), deployed strategies that focused on improving identification of FH in primary care settings. The CARE-FH study is used as an example to describe program development, implementation, and evaluation techniques of implementation strategies. Conclusion: The development and deployment of evidence-based implementation strategies that address barriers to FH care are important next steps to improve identification, cascade testing, and management.

17.
J Pers Med ; 12(12)2022 Nov 22.
Artículo en Inglés | MEDLINE | ID: mdl-36556164

RESUMEN

Genomic screening programs have potential to benefit individuals who may not be clinically ascertained, but little is known about the psychological impact of receiving genetic results in this setting. The current study sought to further the understanding of individuals' psychological response to receiving an actionable genetic test result from genomic screening. Telephone surveys were conducted with patient-participants at 6 weeks and 6 months post genetic result disclosure between September 2019 and May 2021 and assessed emotional response to receiving results via the FACToR, PANAS, and decision regret scales. Overall, 354 (29.4%) study participants completed both surveys. Participants reported moderate positive emotions and low levels of negative emotions, uncertainty, privacy concern, and decision regret over time. There were significant decreases in negative emotions (p = 0.0004) and uncertainty (p = 0.0126) between time points on the FACToR scale. "Interested" was the highest scoring discrete emotion (T1 3.6, T2 3.3, scale 0−5) but was significantly lower at 6 months (<0.0001). Coupled with other benefits of genomic screening, these results of modest psychological impact waning over time adds support to clinical utility of population genomic screening programs. However, questions remain regarding how to elicit an emotional response that motivates behavior change without causing psychological harm.

18.
Am J Prev Cardiol ; 10: 100344, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35517872

RESUMEN

Objective: To explore alignment of perspectives from individuals and families with familial hypercholesterolemia (FH) to the FH Global Call to Action recommendations. Methods: Interviews and focus groups were conducted with individuals and families with FH from multiple U.S. health systems and the Family Heart Foundation community to capture lived experiences and to identify barriers to diagnosis, cascade testing, and treatment. Participant perspectives were examined and classified, according to their alignment to recommendations of the FH Global Call to Action. Results: A total of 75 lived experiences were analyzed. Participants were majority female, mostly white, older, and well-educated. Participants most frequently mentioned recommendations were family-based care (84%) and screening, testing, & diagnosis (84%), followed by treatment (69%), advocacy (60%), cost & value (59%), awareness (56%), research & registries (43%), and severe & homozygous FH (11%). An average of 4.65 (SD 1.76) recommendations were mentioned. Conclusions: The FH Global Call to Action was driven by the persistent unmet needs of those living with FH in receiving a timely diagnosis, appropriate care, and support to prevent early morbidity and mortality. Patient- and family-centric perspectives suggest the FH Global Call to Action captures these concerns. Acting on recommendations, particularly improvements in screening and family-based care, will address patient, and public health, concerns.

19.
PLoS One ; 17(6): e0268913, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35657778

RESUMEN

OBJECTIVE: To examine factors associated with cancer patients' satisfaction using telehealth during COVID-19, including video conferencing platforms and secure messaging systems. METHOD: Patients with cancer participated in a cross-sectional, web-based survey was conducted with patients with cancer. The survey included questions about satisfaction with video-conferencing and secure messaging platforms to interact with clinicians during the COVID-19 pandemic. Logistic regression analyses were conducted to examine predictors of satisfaction for each telehealth platform. RESULTS: Participants generally reported positive satisfaction with each telehealth platform. Both platforms were commonly used to review medical results and discuss symptoms or treatment. Participants identifying as a man were most satisfied with their video-conferencing session, especially if they had a comfortable place to sit. Patients were more satisfied with secure messaging because they could ask a question without scheduling an appointment. DISCUSSION: When strategically used together, video-conferencing platforms and secure messaging may increase patient satisfaction in cancer care during the remainder of the pandemic and beyond. Attention must be paid to optimizing factors that promote satisfaction for each telehealth platform.


Asunto(s)
COVID-19 , Neoplasias , Telemedicina , COVID-19/epidemiología , Estudios Transversales , Humanos , Masculino , Neoplasias/epidemiología , Neoplasias/terapia , Pandemias , Satisfacción del Paciente , SARS-CoV-2 , Telemedicina/métodos
20.
JMIR Cancer ; 8(3): e38722, 2022 Jul 05.
Artículo en Inglés | MEDLINE | ID: mdl-35788019

RESUMEN

BACKGROUND: Adult child caregivers of parents with cancer may face challenges when communicating with the patient and other family members, communicating during clinical interactions, and navigating web-based information seeking. OBJECTIVE: We developed and pilot-tested the Healthy Communication Practice program for adult child caregivers of parents with a blood cancer, which aims to help participants learn and implement communication skills central to caregiving. We assessed the feasibility and acceptability of the training. METHODS: Eligible participants completed a preprogram survey. We assessed the feasibility of participants completing the intervention in the allotted time. Participants had 2 weeks to complete the 2-part, 90-minute online program and completed a postprogram survey that included program evaluation items and the Acceptability of Intervention Measure (AIM) using a 1-5 rating scale (5=strongly agree). RESULTS: Of 50 caregivers who initially expressed interest, 34 consented, and 30 completed the program and both surveys (88% completion rate). Caregivers had a mean age of 45.07 (SD 11.96) years and provided care for parents who had a mean age of 73.31 (SD 9.38) years. Caregivers were primarily daughters (n=22, 73%). Overall, scores on the AIM scale were high (mean 4.48, SD 0.67). Specifically, caregivers felt the content met their communication needs (mean 4.58, SD 0.62) and their own needs as a caregiver of a parent with a blood cancer (mean 4.39, SD 0.72). CONCLUSIONS: We demonstrated the feasibility and acceptability of the Healthy Communication Practice program, which aims to enhance family and clinical communication skills among caregivers of a parent with a blood cancer. Future studies will examine the efficacy of the program and its impact on both caregiver and patient communication and health outcomes.

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