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1.
Support Care Cancer ; 32(3): 197, 2024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38416230

RESUMO

PURPOSE: Treatment decision-making for older adults with acute myeloid leukemia (AML) is complex and preference-sensitive. We sought to understand the patient experience of treatment decision-making to identify specific challenges in shared decision-making to improve clinical care and to inform the development of directed interventions. METHODS: We conducted in-depth interviews with newly diagnosed older (≥ 60 years) adults with AML and their caregivers following a semi-structured interview guide at a public safety net academic hospital. Interviews were digitally recorded, and qualitative thematic analysis was employed to synthesize findings. RESULTS: Eighteen in-depth interviews were conducted. Age ranged from 62 to 78 years. Patients received intermediate- (50%) or high-intensity (44%) chemotherapy or best supportive care only (6%). Six themes of patient experiences emerged from the analysis: patients (1) felt overwhelmed and in shock at diagnosis, (2) felt powerless to make decisions, (3) felt rushed and unprepared to make a treatment decision, (4) desired to follow oncologist recommendations for treatment, (5) balanced multiple competing factors during treatment decision-making, and (6) desired for ongoing engagement into their care planning. Patients reported many treatment outcomes that were important in treatment decision-making. CONCLUSIONS: Older adults with newly diagnosed AML feel devastated and in shock at their diagnosis which appears to contribute to a feeling of being overwhelmed, unprepared, and rushed into treatment decisions. Because no one factor dominated treatment decision-making for all patients, the use of strategies to elicit individual patient preferences is critical to inform treatment decisions. Interventions are needed to reduce distress and increase a sense of participation in treatment decision-making.


Assuntos
Leucemia Mieloide Aguda , Oncologistas , Humanos , Idoso , Pessoa de Meia-Idade , Leucemia Mieloide Aguda/terapia , Tomada de Decisão Compartilhada , Emoções , Preferência do Paciente
2.
J Public Health Manag Pract ; 30(5): 688-700, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38985535

RESUMO

CONTEXT: Most incident cases of cervical cancer in the United States are attributable to inadequate screening. Federally qualified health centers (FQHCs) serve a large proportion of women who are low-income, have no insurance, and are underserved-risk factors for insufficient cervical cancer screening. FQHCs must maintain quality measures to preserve their accreditation, address financial reimbursements, and provide quality care. Implementation of human papillomavirus (HPV) self-collection can improve cervical cancer screening coverage within FQHCs. OBJECTIVES: To understand perspectives from clinical personnel on current cervical cancer screening rates at FQHCs in North Carolina and the impact of implementing HPV self-collection among underscreened patients on screening rates and performance measures. DESIGN: The study used focus groups and key informant interviews. Coding-based thematic analysis was applied to both focus group and interview transcripts. Emergent themes regarding perspectives on self-collection implementation were mapped onto Consolidated Framework for Implementation Research (CFIR) constructs to identify future barriers and facilitators to implementation. SETTING: Two FQHCs in North Carolina and a cloud-based videoconferencing platform. PARTICIPANTS: Six FQHCs in North Carolina; 45 clinical and administrative staff from the 6 FQHCs; 1 chief executive officer (n = 6), 1 senior-level administrator (n = 6), 1 chief medical officer (n = 6), and 1 clinical data manager (n = 6) from each FQHC. MAIN OUTCOME MEASURE: Achievement of clinical perspectives. RESULTS: Societal-, practice-, and patient-level factors currently contribute to subpar cervical cancer screening rates. HPV self-collection was expected to improve screening uptake among underscreened women at FQHCs, and thus quality and performance measures, by offering an alternative screening approach for in-clinic or at-home use. Implementation barriers include financial uncertainties and HPV self-collection not yet a Food and Drug Administration-approved test. CONCLUSION: HPV self-collection has potential to improve cervical cancer screening quality and performance measures of FQHCs. For a successful implementation, multilevel factors that are currently affecting low screening uptake need to be addressed. Furthermore, the financial implications of implementation and approval of HPV self-collection as a test for cervical cancer screening quality measures need to be resolved.


Assuntos
Detecção Precoce de Câncer , Grupos Focais , Infecções por Papillomavirus , Melhoria de Qualidade , Neoplasias do Colo do Útero , Humanos , Feminino , North Carolina , Detecção Precoce de Câncer/métodos , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle , Infecções por Papillomavirus/diagnóstico , Adulto , Programas de Rastreamento/métodos , Programas de Rastreamento/normas , Pessoa de Meia-Idade , Manejo de Espécimes/métodos , Pesquisa Qualitativa , Papillomaviridae/isolamento & purificação , Papillomaviridae/patogenicidade
3.
Cancer ; 129(S19): 3128-3140, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37691525

RESUMO

BACKGROUND: The aim of this study is to gather detailed insights from breast cancer (BC) clinicians on how to have patient-centered conversations about weight and weight management with women diagnosed with early BC. A high body mass index (BMI) is a risk factor for female BC, and many women diagnosed with BC experience unhealthy weight gain after their primary treatment. The oncology team has the opportunity to discuss the importance of healthy weight for BC prognosis and survival. METHODS: The sample of community-based BC clinicians included the following: three Black clinicians, three White clinicians, and two clinicians who were neither Black nor White; six females and two males; and six MDs and two physician assistants or nurse practitioners. Semistructured telephone interviews were conducted with these clinicians regarding their experience with and insights into having healthy weight conversations during routine clinic visits. RESULTS: Clinicians noted that weight-related conversations should focus less on BMI and weight loss and more on "healthy behavior." Clinicians looked for cues from their patients as to when they were ready for "healthy weight" counseling, receptive to diet/nutrition counseling and referrals, and ready to attempt behavioral change. Clinicians noted that encouraging physical activity could be especially challenging with patients accustomed to a sedentary lifestyle. CONCLUSIONS: Clinic-based conversations about healthy weight are likely to be most productive for both patients and their treating oncologists during the post-primary treatment phase when patients are most receptive to behavioral change that enhances their prognosis and survival.


Assuntos
Manutenção do Peso Corporal , Neoplasias da Mama , Assistência Centrada no Paciente , Relações Médico-Paciente , Aumento de Peso , Neoplasias da Mama/fisiopatologia , Neoplasias da Mama/terapia , Assistência Centrada no Paciente/métodos , Índice de Massa Corporal , Humanos , Masculino , Feminino , Entrevistas como Assunto , Sinais (Psicologia) , Dieta Saudável , Oncologistas , Enfermeiras e Enfermeiros
4.
Cancer Causes Control ; 34(Suppl 1): 159-169, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36840904

RESUMO

PURPOSE: The Centers for Disease Control and Prevention's National Comprehensive Cancer Control Program (NCCCP) requires that states develop comprehensive cancer control (CCC) plans and recommends that disparities related to rural residence are addressed in these plans. The objective of this study was to explore rural partner engagement and describe effective strategies for incorporating a rural focus in CCC plans. METHODS: States were selected for inclusion using stratified sampling based on state rurality and region. State cancer control leaders were interviewed about facilitators and barriers to engaging rural partners and strategies for prioritizing rural populations. Content analysis was conducted to identify themes across states. RESULTS: Interviews (n = 30) revealed themes in three domains related to rural inclusion in CCC plans. The first domain (barriers) included (1) designing CCC plans to be broad, (2) defining "rural populations," and (3) geographic distance. The second domain (successful strategies) included (1) collaborating with rural healthcare systems, (2) recruiting rural constituents, (3) leveraging rural community-academic partnerships, and (4) working jointly with Native nations. The third domain (strategies for future plan development) included (1) building relationships with rural communities, (2) engaging rural constituents in planning, (3) developing a better understanding of rural needs, and (4) considering resources for addressing rural disparities. CONCLUSION: Significant relationship building with rural communities, resource provision, and successful strategies used by others may improve inclusion of rural needs in state comprehensive cancer control plans and ultimately help plan developers directly address rural cancer health disparities.


Assuntos
Neoplasias , População Rural , Humanos , Atenção à Saúde , Neoplasias/epidemiologia , Neoplasias/prevenção & controle
5.
J Urol ; 209(1): 150-160, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36067365

RESUMO

PURPOSE: The aim of this mixed methods study was to investigate patient and provider perceptions of repeat transurethral resection of bladder tumors to improve counseling as new nonsurgical treatment modalities for nonmuscle-invasive bladder cancer emerge. MATERIALS AND METHODS: Quantitative data were collected via a web-based survey through the Bladder Cancer Advocacy Network of patients with nonmuscle-invasive bladder cancer who had undergone at least 1 transurethral resection of bladder tumor. Bivariable and multivariable analyses were performed to evaluate associations of patient demographics and clinical variables with treatment preference. Qualitative data were collected with 60 in-depth telephone interviews with patients (n=40) and urologists (n=20) to understand experiences with bladder cancer and transurethral resection of bladder tumor. Telephone interviews were conducted by trained qualitative experts. Transcripts were imported into Dedoose to facilitate analysis. RESULTS: Survey data of 352 patients showed 210 respondents (60%) preferred repeat transurethral resection of bladder tumor while 142 (40%) preferred intravesical chemoablation. Patients who preferred repeat transurethral resection of bladder tumor were more likely to prioritize initial treatment effectiveness (63%), whereas those who preferred chemoablation prioritized risk of recurrence (55%). Variables associated with a preference for intravesical chemoablation included U.S. residence (OR=2; 95% CI 1.1, 3.8), or if they expressed their reason for treatment preference as priority of recurrence risk over effectiveness (OR=14.6; 95% CI 7.4, 28.5). Predominant interview themes varied across participants, with patients but not urologists emphasizing the emotional toll of the procedure along with the need for improved counseling regarding recurrence, terminology, and cancer-related signs and symptoms. CONCLUSIONS: Differences exist in the way patients and urologists perceive repeat transurethral resection of bladder tumor for bladder cancer. Understanding transurethral resection of bladder tumor perception will aid in shared decision making as novel treatments emerge for nonmuscle-invasive bladder cancer.


Assuntos
Ressecção Transuretral de Bexiga , Neoplasias da Bexiga Urinária , Humanos , Neoplasias da Bexiga Urinária/cirurgia , Percepção
6.
Support Care Cancer ; 31(2): 136, 2023 Jan 26.
Artigo em Inglês | MEDLINE | ID: mdl-36700992

RESUMO

PURPOSE: To identify physical activity (PA) barriers and facilitators among Black and African American (Black/AA) cancer survivors that should be considered in future PA intervention development for this population. METHODS: A community advisory board (CAB) of Black/AA cancer survivors and patient advocates guided in-depth qualitative interviews (n = 19) that were completed via telephone using a semi-structured interview guide. Interviews were transcribed verbatim, and data were analyzed using directed content analysis to detail a report of PA barriers and facilitators during and after cancer treatment. The CAB reviewed and interpreted these barriers and facilitators to identify the final results. RESULTS: Survivors (n = 19) of nine different types of cancer completed interviews. PA barriers during cancer treatments included physical and psychological suffering. PA barriers after cancer treatments included social and environmental constraints (e.g., lack of access needed for PA, safety concerns, and competing priorities). PA facilitators both during and after cancer treatments included family support, faith, and support from other survivors. PA facilitators during treatment also included feeling better after doing PA, setting realistic and flexible goals, and gaining a sense of control of one's health by striving for PA goals. CONCLUSIONS: To increase PA among Black/AA cancer survivors, PA interventions are needed that address structural barriers, include the role of faith, leverage family support, highlight the psychological benefits of PA, and use goal setting.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Sobreviventes de Câncer/psicologia , Negro ou Afro-Americano , Exercício Físico/psicologia , Sobreviventes/psicologia , Pesquisa Qualitativa , Neoplasias/terapia
7.
Prev Chronic Dis ; 20: E93, 2023 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-37857461

RESUMO

INTRODUCTION: Primary testing for high-risk human papillomavirus (HPV) by self-collection could result in higher rates of cervical cancer screening. Federally qualified health centers (FQHCs) in the US serve a large proportion of women who have low income and no health insurance and are medically underserved - risk factors for being insufficiently screened for cervical cancer. Although the implementation of self-collection for HPV testing is not yet widespread, health care entities need to prepare for its eventual approval by the US Food and Drug Administration. We conducted focus groups and interviews among clinical and administrative staff and leadership to gather data on key logistical concerns that must be addressed before implementing self-collection for HPV testing in FQHCs. METHODS: We identified focus group and interview participants from 6 FQHCs in North Carolina. We conducted focus groups with clinical and administrative staff (N = 45) and semistructured interviews with chief executive officers, senior-level administrators, chief medical officers, and clinical data managers (N = 24). Transcripts were coded by using codebooks derived from research questions and notes taken during data collection. Themes emerged on implementation of self-collection for HPV testing. We applied the constructs from the Consolidated Framework for Implementation Research (CFIR) to themes to identify domains of potential barriers and facilitators to implementation. RESULTS: Clinical personnel reported that offering self-collection for HPV testing is acceptable and feasible and can increase cervical cancer screening rates. Uncertainties emerged about accuracy of results, workflow disruptions, financial implications, and effects on clinic quality measures. CONCLUSION: Implementing self-collection for HPV testing was considered feasible and acceptable by participants. However, important health service delivery considerations, including financial implications, must be addressed before integrating self-collection for HPV testing into the standard of care.


Assuntos
Infecções por Papillomavirus , Neoplasias do Colo do Útero , Humanos , Feminino , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle , Detecção Precoce de Câncer/métodos , Infecções por Papillomavirus/diagnóstico , Infecções por Papillomavirus/prevenção & controle , Atenção à Saúde , North Carolina , Programas de Rastreamento/métodos
8.
Liver Transpl ; 28(3): 422-436, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34529886

RESUMO

Survivorship after liver transplantation (LT) is a novel concept providing a holistic view of the arduous recovery experienced after transplantation. We explored components of early survivorship including physical, emotional, and psychological challenges to identify intervention targets for improving the recovery process of LT recipients and caregivers. A total of 20 in-person interviews were conducted among adults 3 to 6 months after LT. Trained qualitative research experts conducted interviews, coded, and analyzed transcripts to identify relevant themes and representative quotes. Early survivorship comprises overcoming (1) physical challenges, with the most challenging experiences involving mobility, driving, dietary modifications, and medication adherence, and (2) emotional and psychological challenges, including new health concerns, financial worries, body image/identity struggles, social isolation, dependency issues, and concerns about never returning to normal. Etiology of liver disease informed survivorship experiences including some patients with hepatocellular carcinoma expressing decisional regret or uncertainty in light of their post-LT experiences. Important topics were identified that framed LT recovery including setting expectations about waitlist experiences, hospital recovery, and ongoing medication requirements. Early survivorship after LT within the first 6 months involves a wide array of physical, emotional, and psychological challenges. Patients and caregivers identified what they wish they had known prior to LT and strategies for recovery, which can inform targeted LT survivorship interventions.


Assuntos
Transplante de Fígado , Sobrevivência , Adulto , Cuidadores/psicologia , Humanos , Transplante de Fígado/efeitos adversos , Transplante de Fígado/psicologia , Pesquisa Qualitativa , Qualidade de Vida/psicologia
9.
J Urol ; 208(3): 580-588, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35640276

RESUMO

PURPOSE: Optima II ("OPTimized Instillation of Mitomycin for Bladder Cancer Treatment," clinicaltrials.gov: NCT03558503) was a phase 2b trial evaluating a nonsurgical alternative as a primary treatment for nonmuscle-invasive bladder cancer (NMIBC). Patients received 6 weekly instillations of UGN-102, a mitomycin-containing reverse thermal gel. This is the first study to report on patient-reported side effects of UGN-102. MATERIALS AND METHODS: Sixty-three patients enrolled in Optima II from 20 sites. Of these 63 patients, 44 were in the cohort completing a quarterly patient-reported outcome measure assessing side effects. Changes in side effects were evaluated using the Wilcoxon signed-rank test. Associations of 3-month outcomes with demographic and clinical characteristics were examined with regression, controlling for baseline values. Ten of 44 patients (23%) were interviewed after the trial to understand tolerability for future patients making treatment decisions. Transcripts were double-coded using standard methods. RESULTS: In the patient-reported outcome measure cohort (44), 61% were men, 57% aged 65+ years and 89% were non-Hispanic White. UGN-102 did not cause decrements in patient-reported urinary symptoms, bloating/flatulence or malaise at the primary endpoint of 3 months. Sexual function mildly worsened. Future health worries improved. Demographics were not correlated with changes. Clinically, sexual function was correlated with new NMIBC and bloating/flatulence was associated with transurethral resection of bladder tumor within 12 months. In interviews, patients appreciated a nonsurgical alternative, would recommend the gel to other patients and would choose the gel over surgery. CONCLUSIONS: A nonsurgical, chemoablative gel (UGN-102) used as a primary treatment for NMIBC offers a more patient-centered therapeutic approach than standard treatments.


Assuntos
Neoplasias da Bexiga Urinária , Administração Intravesical , Adulto , Antibióticos Antineoplásicos/uso terapêutico , Feminino , Flatulência/induzido quimicamente , Flatulência/tratamento farmacológico , Humanos , Masculino , Mitomicina/efeitos adversos , Invasividade Neoplásica/patologia , Recidiva Local de Neoplasia/patologia , Medidas de Resultados Relatados pelo Paciente , Neoplasias da Bexiga Urinária/cirurgia
10.
Support Care Cancer ; 30(3): 2047-2058, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34655327

RESUMO

PURPOSE: Financial toxicity is associated with negative patient outcomes, and rural populations are disproportionately affected by the high costs of cancer care compared to urban populations. Our objective was to (1) understand cancer programs' perceptions of rural-urban differences in cancer patients' experiences of financial hardship, (2) evaluate the resources available to cancer patients across the rural-urban continuum, and (3) determine how rural and urban health care teams assess and address financial distress in cancer patients. METHODS: Seven research teams within the Cancer Prevention and Research Control Network conducted semi-structured interviews with cancer program staff who have a role in connecting cancer patients with financial assistance services in both rural and urban counties. Interviews were audio-recorded and transcribed. We identified themes using descriptive content and thematic analysis. RESULTS: We interviewed 35 staffs across 29 cancer care programs in seven states, with roughly half of respondents from programs in rural counties. Participants identified differences in rural and urban patients' experiences of financial hardship related to distance required to travel for treatment, underinsurance, and low socioeconomic status. Insufficient staffing was an identified barrier to addressing rural and urban patients' financial concerns. CONCLUSIONS: Improved financial navigation services could mitigate the effects of financial toxicity experienced by cancer patients, particularly rural patients, throughout treatment and survivorship. Future research is needed to improve how cancer programs assess financial hardship in patients and to expand financial navigation services to better serve rural cancer patients.


Assuntos
Estresse Financeiro , Neoplasias , Custos e Análise de Custo , Humanos , Neoplasias/terapia , População Rural , População Urbana
11.
Cancer ; 127(22): 4266-4276, 2021 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-34374079

RESUMO

BACKGROUND: Women with obesity are at higher risk for high-grade and/or advanced-stage breast cancer in comparison with women without obesity. Many women with a high body mass index (BMI) at breast cancer diagnosis experience further weight gain during and after treatment. This study investigated Black and White patient perspectives on conversations with their oncologists about weight and weight management. METHODS: Focus groups using a virtual platform (Zoom) were conducted with women after primary treatment for stage I to III breast cancer who were 21 years or older and had a BMI ≥ 30 kg/m2 : 2 with Black women (n = 12) and 2 with White women (n = 14). RESULTS: Participants asked that their oncologists be "transparent" about weight gain as a potential side effect of their cancer treatment and how excess weight might affect their prognosis and survival. They asked to be "seen as an individual" to facilitate both person-centered and culturally appropriate conversations about behavioral changes needed for weight management. Participants urged clinicians to take the lead in initiating conversations about weight to underscore its importance in cancer care and survivorship. They welcomed actionable recommendations about nutrition and exercise from either the oncology clinician or a specialist. Participants offered specific suggestions on how clinicians could initiate weight-related conversations, beginning with questions eliciting patients' perspectives on their weight and lifestyle. CONCLUSIONS: Many women with early-stage breast cancer and obesity have concerns about weight and weight gain and urge their oncologists to use an active and personalized approach in recommending and supporting efforts at weight management. LAY SUMMARY: Focus group discussions with Black and White women with early-stage breast cancer and obesity have elicited patient perspectives on conversations with their oncologists about weight and weight management. Many patients have concerns about weight and weight gain and urge their oncologists to use an active and personalized approach in recommending and supporting efforts at weight management.


Assuntos
Neoplasias da Mama , Índice de Massa Corporal , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Comunicação , Feminino , Grupos Focais , Humanos , Obesidade/complicações , Obesidade/terapia
12.
Liver Transpl ; 27(10): 1454-1467, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33942480

RESUMO

Survivorship is a well-established concept in the cancer care continuum with a focus on disease recurrence, quality of life, and the minimization of competing risks for mortality; however, survivorship has not been well studied in liver transplantation (LT). We investigated what survivorship means to LT patients and identified motivations and coping strategies for overcoming challenges after LT. A total of 20 in-depth home interviews were conducted among adults 3 to 6 months after LT. Interviews were conducted by trained qualitative research experts and coded and analyzed using an inductive approach. A majority of LT recipients (75%) identified themselves as survivors. Integral to the definition of survivorship was overcoming hardship (including experiences on the waiting list) and the unique experience of being given a "second chance" at life. Motivations to survive included a new chance at life (55%), family (40%), spirituality/faith (30%), and fear of rejection (15%). LT recipients and caregivers identified multiple strategies to cope with post-LT challenges, including relying on a large network of community, spiritual, and virtual support. These findings informed a conceptual model of LT survivorship based on socioecological theory, which identified the following variables influencing survivorship: (1) pretransplant experiences, (2) individual attributes and challenges, (3) interpersonal relationships with caregivers and other social support, (4) community relationships, and (5) large-scale factors including neighborhood and financial issues. LT recipients identified themselves as survivors, and post-LT identities were greatly influenced by pre-LT experiences. These perspectives informed an in-depth conceptual model of survivorship after transplantation. We identified sources of motivation and coping strategies used in LT recovery that could be targets of survivorship interventions aimed at improving post-LT outcomes.


Assuntos
Transplante de Fígado , Sobrevivência , Adaptação Psicológica , Adulto , Humanos , Pesquisa Qualitativa , Qualidade de Vida , Sobreviventes , Transplantados
13.
Cancer ; 125(24): 4471-4480, 2019 Dec 15.
Artigo em Inglês | MEDLINE | ID: mdl-31454424

RESUMO

BACKGROUND: With increasing survival rates, a growing population of patients with cancer have received or will receive adjuvant therapy to prevent cancer recurrences. Patients and caregivers will confront the complexities of balancing the preventative benefits of adjuvant therapy with possible near-term or long-term adverse events (AEs). Adjuvant treatment-related AEs (from minimal to severe) can impact therapeutic adherence, quality of life, emotional and physical health, and survival. However, to the authors' knowledge, limited information is available regarding how stakeholders use or desire to use adjuvant-related AE information to inform the care of patients with cancer. METHODS: A qualitative, purposeful sampling approach was used to elicit stakeholder feedback via semistructured interviews (24 interviews). Drug development, drug regulatory, clinical, payer, and patient/patient advocacy stakeholders were questioned about the generation, dissemination, and use of adjuvant treatment-related AE information to inform the care of patients with cancer. Transcripts were coded independently by 2 senior health care researchers and reconciled to identify key themes. RESULTS: All stakeholder groups in the current study identified needed improvements in each of the following 4 areas: 1) improving the accessibility and relevance of AE-related information; 2) better integrating and implementing available information regarding AEs for decisions; 3) connecting contemporary cultural and economic value systems to the generation and use of information regarding adjuvant treatment-related AEs; and 4) addressing a lack of alignment and ownership of stakeholder efforts to improve the use of AE information in the adjuvant setting. CONCLUSIONS: Despite commonalities in the overall needs identified by the diverse stakeholders in the current study, broad systemic change has been stymied. The current study identified the lack of alignment and the absence of a central "owner" of these diffuse efforts as a previously unrecognized hurdle to realizing the desired systemic improvements. Future initiatives aimed at improving quality of life and outcomes for patients receiving adjuvant therapy through the improved use of AE information must address this challenge through innovative collectives and novel leadership strategies.


Assuntos
Quimioterapia Adjuvante/efeitos adversos , Neoplasias/epidemiologia , Cuidadores , Quimioterapia Adjuvante/métodos , Pesquisas sobre Atenção à Saúde , Pessoal de Saúde , Humanos , Neoplasias/terapia , Médicos , Pesquisa Qualitativa
14.
J Gen Intern Med ; 34(10): 2083-2090, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31410810

RESUMO

BACKGROUND: The transition from pediatric to adult care is a critical period for young adults with childhood-onset conditions. General internists are tasked with participating in the care of this vulnerable population. Existing guidelines regarding transition do not fully address structural or organizational characteristics of practices that facilitate transition. Moreover, literature regarding transition has focused on pediatric subspecialty settings, leaving internists with little guidance after transfer. OBJECTIVES: To better understand post-transfer transitional care by describing care models that primary care providers have implemented, and examining common features of generalist physicians' experiences providing transitional care. DESIGN: Qualitative methods, semi-structured interviews. PARTICIPANTS: Nineteen generalist-trained physicians from across the USA, engaged in transition-focused and/or ongoing care of adolescents and young adults with childhood-onset conditions. APPROACH: Content and grounded theory analyses. KEY RESULTS: Participants included nineteen physicians from seventeen institutions. Most (89%) were from academic medical centers. About 80% had completed a combined internal medicine-pediatrics residency. About 70% worked with clinic staff who were dedicated to transition. Practice structures fell into four main care models: (1) primary care in adult settings; (2) transition support and primary care in pediatric settings; (3) a blend of pediatric and adult care elements forming a bridge during transition; and (4) a transition consultative service. Most provided primary care for adults with childhood-onset conditions within larger adult-oriented primary care practices. Common features across interviews included taking extra time with patients both during and between visits and an interdisciplinary team-based approach. Shared practice strategies and philosophies emphasized care coordination, focus on the whole patient beyond immediate health concerns, and willingness to learn from practice and from families. CONCLUSIONS: Participants used disparate care models. Common features and strategies among interviews highlight key functions and attributes of transitional care across settings, suggest important elements of care post-transfer, and clarify the role of generalists.


Assuntos
Atenção Primária à Saúde/organização & administração , Transição para Assistência do Adulto/organização & administração , Adolescente , Adulto , Criança , Doença Crônica/terapia , Humanos , Pediatria/organização & administração , Pesquisa Qualitativa , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
16.
Health Promot Pract ; 19(6): 915-924, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29216757

RESUMO

BACKGROUND: This article describes the formative research undertaken to explore challenges of low-income parents of 3-to 5-year-olds to inform a parent-focused life skills-based intervention to prevent obesity in preschool-aged children. METHOD: A total of 40 parents completed surveys, 30 parents participated in focus groups, and 5 community stakeholders participated in individual interviews. In each data mode, participants were asked to prioritize a list of challenges centered on parenting, family care, and self-care. Survey data were analyzed descriptively using SAS, while focus groups and interviews were analyzed for emerging themes using ATLAS.ti. RESULTS: Parents reported needing strategies for managing children's behavior around picky eating, limits/boundaries, tantrums, and routines. Challenges with child behavior management were compounded by parents' inability to find affordable fun family activities outside the home and difficulties in communicating childrearing expectations to coparents/relatives who assisted with child care. Added to these were other competing priorities (e.g., financial) that led to the neglect of self, including the inability to find "me" time, build relationships, and care for one's health. CONCLUSIONS: Interventions that address parenting, family care and self-care challenges of low-income parents may enhance resilience and support positive changes that can promote healthy development in children, including obesity prevention.


Assuntos
Pais/educação , Obesidade Infantil/prevenção & controle , Pobreza , Adulto , Criança , Comportamento Infantil , Pré-Escolar , Dieta , Exercício Físico , Feminino , Grupos Focais , Estilo de Vida Saudável , Humanos , Masculino , Poder Familiar , Inquéritos e Questionários
17.
Prev Chronic Dis ; 14: E66, 2017 08 17.
Artigo em Inglês | MEDLINE | ID: mdl-28817791

RESUMO

INTRODUCTION: Practice facilitation involves trained individuals working with practice staff to conduct quality improvement activities and support delivery of evidence-based clinical services. We examined the feasibility of using practice facilitation to assist federally qualified health centers (FQHCs) to increase colorectal cancer screening rates in North Carolina. METHODS: The intervention consisted of 12 months of facilitation in 3 FQHCs. We conducted chart audits to obtain data on changes in documented recommendation for colorectal cancer screening and completed screening. Key informant interviews provided qualitative data on barriers to and facilitators of implementing office systems. RESULTS: Overall, the percentage of eligible patients with a documented colorectal cancer screening recommendation increased from 15% to 29% (P < .001). The percentage of patients up to date with colorectal cancer screening rose from 23% to 34% (P = .03). Key informants in all 3 clinics said the implementation support from the practice facilitator was critical for initiating or improving office systems and that modifying the electronic medical record was the biggest challenge and most time-consuming aspect of implementing office systems changes. Other barriers were staff turnover and reluctance on the part of local gastroenterology practices to perform free or low-cost diagnostic colonoscopies for uninsured or underinsured patients. CONCLUSION: Practice facilitation is a feasible, acceptable, and promising approach for supporting universal colorectal cancer screening in FQHCs. A larger-scale study is warranted.


Assuntos
Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/prevenção & controle , Centros Comunitários de Saúde/organização & administração , Detecção Precoce de Câncer , Atenção Primária à Saúde/normas , Colonoscopia , Neoplasias Colorretais/epidemiologia , Feminino , Humanos , Masculino , Programas de Rastreamento , Pessoa de Meia-Idade , North Carolina/epidemiologia , Projetos Piloto , Melhoria de Qualidade , Fatores de Risco
19.
Nicotine Tob Res ; 18(10): 2006-12, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27029821

RESUMO

INTRODUCTION: Most studies have assessed use of "e-cigarettes" or "electronic cigarettes," potentially excluding new electronic nicotine delivery systems (ENDS), such as e-hookahs and vape pens. Little is known about how adolescents and young adults perceive ENDS and if their perceptions vary by sub-type. We explored ENDS perceptions among these populations. METHODS: Ten focus groups with 77 adolescents and young adults, ages 13-25, were conducted in spring 2014. Participants were users or susceptible nonusers of novel tobacco products. Focus group transcripts were coded for emergent themes. RESULTS: Participants reported positive ENDS attributes, including flavor variety; user control of nicotine content; and smoke trick facilitation. Negative attributes included different feel compared to combustible cigarettes, nicotine addiction potential, and no cue to stop use. Participants perceived less harm from ENDS compared to combustible cigarettes, perhaps due to marketing and lack of product regulation, but noted the uncertainty of ingredients in ENDS. Numerous terms were used to describe ENDS, including "e-cigarette," "e-hookah," "hookah pens," "tanks," and "vapes." Although no clear classification system emerged, participants used product characteristics like nicotine content and chargeability to attempt classification. Perceptions differed by product used. E-hookah users were perceived as young and trendy while e-cigarette users were perceived as old and addicted to nicotine. CONCLUSIONS: Young adults and adolescents report distinct ENDS sub-types with varying characteristics and social perceptions of users. Although they had more positive than negative perceptions of ENDS, prevention efforts should consider highlighting negative attributes as they may discourage use and product trial among young nonusers. IMPLICATIONS: Our study underscores the need for a standardized measurement system for ENDS sub-types and additional research on how ENDS sub-types are perceived among adolescents and young adults. In addition, our findings highlight negative product attributes reported by participants that may be useful in prevention and regulatory efforts to offset favorable marketing messages.


Assuntos
Comportamento do Adolescente , Sistemas Eletrônicos de Liberação de Nicotina , Conhecimentos, Atitudes e Prática em Saúde , Fumar , Vaping , Adolescente , Feminino , Grupos Focais , Humanos , Masculino , Estados Unidos , Adulto Jovem
20.
Nicotine Tob Res ; 18(7): 1581-7, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-26764259

RESUMO

INTRODUCTION: Novel tobacco products, such as little cigars, cigarillos, hookah, and e-cigarettes, and their smoke or aerosol contain chemicals which the FDA has determined to be Harmful or Potentially Harmful Constituents. We explored adolescents' and young adults' knowledge and beliefs about constituents in novel tobacco products and their smoke or aerosol, in order to inform risk communication messages. METHODS: Seventy-seven adolescents and young adults (ages 13-25) participated in 10 focus groups, including 47 novel tobacco product users and 30 susceptible nonusers. Participants were asked to discuss 10 pre-selected constituents found in novel tobacco products and their smoke or aerosol. The first author analyzed the discussion for emergent themes. RESULTS: Participants were generally familiar with arsenic, carbon monoxide, formaldehyde, and nicotine, but unfamiliar with acetaldehyde, acrolein, 4-(methylnitrosamino)-1-(3-pyridyl)-1-butanon (NNK), and N-nitrosonornicotine (NNN). All participants had negative beliefs about most constituents, although users had positive beliefs about nicotine. "Unfamiliar" constituents were associated with similarly-sounding words (eg, acetaldehyde sounds like acetaminophen), and some participants recognized words in the chemical names of NNK/NNN (eg, "nitro"). "Familiar" constituents were associated with negative health effects and other common products the constituents are found in. All participants wanted more information about the constituents' health effects, toxicity, and other common products. Most participants were unaware the constituents discussed are in novel tobacco products and their smoke or aerosol. CONCLUSIONS: Risk communication messages could capitalize on negative associations with familiar constituents, or attempt to educate about unfamiliar constituents, to discourage novel tobacco product use among adolescents and young adults. IMPLICATIONS: The results of this study have implications for how the FDA and other agencies can communicate about the risks of novel tobacco products to the general public, which will be particularly important once the Deeming Rule is finalized. Our findings suggest it may be effective to capitalize on the public's negative beliefs about and associations with familiar constituents, or to educate about unfamiliar constituents and their health effects, their concentration and toxicity in novel tobacco products and their smoke or aerosol, and other products they are found in.


Assuntos
Comportamento do Adolescente , Sistemas Eletrônicos de Liberação de Nicotina/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Fumar/psicologia , Produtos do Tabaco/análise , Adolescente , Adulto , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , North Carolina , Adulto Jovem
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