RESUMO
PURPOSE: This qualitative study aimed to explore Hispanic parents of childhood cancer survivors (CCS) perceptions of facilitators and barriers to their caregiving experience. METHODS: We conducted semi-structured phone interviews with 15 Hispanic/Latino parents (English and Spanish). Parents were recruited using a purposive sampling method in a safety-net hospital in Los Angeles County from July-September 2020. Interviews were audio-recorded, professionally transcribed, and analyzed in the language they were conducted. Two coders independently coded interviews following reflexive thematic analysis and elements of grounded theory methodology. RESULTS: Most caregivers were mothers caring for leukemia CCS who had finished treatment more than 2 years prior. Caregivers expressed gratitude to social workers for introducing and aiding with the application process for safety-net programs that enabled caregivers to focus on their child's care and well-being. Caregivers revealed the importance of supportive communication with the medical team, particularly after their child's treatment was considered complete. All caregivers found caring for a child with cancer overwhelming, and many described deteriorations in their health and well-being. Financial instability, transportation difficulties, and work disruptions were identified as barriers, resulting in caregiver distress. Caregivers also shared the challenges they experienced navigating the healthcare system, seeking care despite lack of legal residency, and staying afloat despite limited employment opportunities. CONCLUSION: Improving navigation to resources and improving relationships with the medical team may reduce the perceived caregiving burden among Hispanic/Latino caregivers throughout their family's cancer journey.
Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Criança , Pais , Cuidadores , Pesquisa Qualitativa , Hispânico ou LatinoRESUMO
PURPOSE: To determine whether racial/ethnic differences in patient experiences with care, potentially leading to underutilization of necessary care, are associated with disparities in Gleason score at diagnosis. METHODS: We used the SEER-CAHPS linked dataset to identify Medicare beneficiaries who completed a Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey prior to diagnosis of prostate cancer. Independent variables included aspects of patient experiences with care captured by CAHPS surveys. We conducted survey weighted multivariable multinomial logistic regression analyses, stratified by patient race/ethnicity, to estimate associations of CAHPS measures with Gleason score at diagnosis. RESULTS: Of the 4,245 patients with prostate cancer, most were non-Hispanic white (NHW) (77.6%), followed by non-Hispanic black (NHB) (8.4%), Hispanic (8.4%), and Asian (5.6%). Excellent experience with getting needed prescription drugs was associated with lower odds of Gleason scores of 7 and 8-10 in NHBs (7: OR = 0.19, 95% CI = 0.05-0.67; 8-10: OR = 0.04, 95% CI = 0.01-0.2) and lower odds of 8-10 in NHWs (OR = 0.61, 95% CI = 0.40-0.93). For NHBs, excellent primary physician ratings were associated with greater odds of a Gleason score of 8-10 (OR = 13.28, 95% CI = 1.53-115.21). CONCLUSION: Patient experiences with access to care and physician relationships may influence Gleason score in different ways for patients of different racial/ethnic groups. More research, including large observational studies with greater proportions of racial/ethnic minority patients, is necessary to understand these relationships and target interventions to overcome disparities and improve patient outcomes.
Assuntos
Etnicidade , Neoplasias da Próstata , Idoso , Disparidades em Assistência à Saúde , Humanos , Masculino , Medicare , Grupos Minoritários , Gradação de Tumores , Avaliação de Resultados da Assistência ao Paciente , Neoplasias da Próstata/diagnóstico , Estados Unidos/epidemiologiaRESUMO
OBJECTIVE: Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors' knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS). METHOD: A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge. RESULTS: Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists. SIGNIFICANCE OF RESULTS: These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.
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Sobreviventes de Câncer , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Adulto , Idoso , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Neoplasias/complicações , Neoplasias/terapia , Cuidados Paliativos , Qualidade de VidaRESUMO
BACKGROUND: Patient experiences with health care have been widely used as benchmark indicators of quality for providers, health care practices, and health plans. OBJECTIVE: The objective of this study was to summarize the literature regarding the associations between Consumer Assessment of Healthcare Providers and Systems (CAHPS) patient experiences and clinical and quality outcomes. RESEARCH DESIGN: A systematic review of the literature was completed using PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature on December 14, 2019. Separate searches were conducted to query terms identifying CAHPS surveys with clinical and quality outcomes of care. Two reviewers completed all components of the search process. STUDY SELECTION: Studies investigating associations between CAHPS composite ratings and health care sensitive clinical outcomes or quality measures of care were included in this review. Studies were excluded if they did not investigate patient experiences using CAHPS composite ratings or if CAHPS composites were not treated as the independent variable. RESULTS: Nineteen studies met inclusion criteria, 10 investigating associations of CAHPS composite ratings with clinical outcomes and 9 investigating these associations with quality measures. Patient-provider communication was the most studied CAHPS composite rating and was significantly associated with self-reported physical and mental health, frequency of emergency room visits and inpatient hospital stays, hospitalization length, and CAHPS personal physician global ratings. CONCLUSIONS: Ratings of patient experience with care may influence clinical and quality outcomes of care. However, key inconsistencies between studies affirm that more research is needed to solidify this conclusion and investigate how patient experiences differentially relate to outcomes for various patient groups.
Assuntos
Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Qualidade da Assistência à Saúde , Comunicação , Serviço Hospitalar de Emergência/estatística & dados numéricos , Pesquisas sobre Atenção à Saúde , Nível de Saúde , Hospitalização/estatística & dados numéricos , HumanosRESUMO
BACKGROUND: Racial/ethnic minorities are more likely to be diagnosed at a later stage of colorectal cancer (CRC). Therefore, our objective was to identify whether racial/ethnic differences in patient experiences (PE) with health care are associated with stage at CRC diagnosis. METHODS: The authors used the National Cancer Institute Surveillance, Epidemiology and End Results registry data linked with the Consumer Assessment of Healthcare Providers and Systems to conduct a retrospective cohort analysis. They examined composite measures from surveys to assess 3 domains: patient-centeredness, timeliness, and realized access. Multivariable logistic regression was used to determine the association between PE with care and earlier stage at diagnosis. RESULTS: Of the 9211 patients, 31.1% non-Hispanic White, 27.2% non-Hispanic Black (NHB), 32.3% Hispanic, and 36.4% Asian were diagnosed with early stage cancer. Compared with non-Hispanic White patients, for the timeliness domain, Hispanic [ß=-2.82; 95% confidence interval (CI), -5.42 to -0.39] and Asian (ß=-6.65; 95% CI, -9.44 to -3.87) patients had significant lower adjusted mean score for getting care quickly. For the realized access domain, Asian (ß=-5.78; 95% CI, -8.51 to -3.05) and NHB patients (ß=-3.18; 95% CI, -5.50 to -0.87) had significantly lower adjusted mean score for getting needed prescription drugs compared with non-Hispanic White patients. Among NHB patients, a 5-Unit increase in getting needed care quickly was associated with higher odds of earlier CRC stage at diagnosis (odds ratio, 1.06; 95% CI, 1.01-1.10). CONCLUSION: There are racial/ethnic disparities in PE with timeliness and realized access to care preceding a CRC diagnosis. Among NHB patients, poor experiences with timeliness and realized access of care may be associated with later stage at diagnosis.
Assuntos
Neoplasias Colorretais/etnologia , Neoplasias Colorretais/terapia , Disparidades em Assistência à Saúde/etnologia , Grupos Minoritários/estatística & dados numéricos , Tempo para o Tratamento/estatística & dados numéricos , Negro ou Afro-Americano/estatística & dados numéricos , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/patologia , Etnicidade/estatística & dados numéricos , Feminino , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos , Humanos , Modelos Logísticos , Masculino , Assistência Centrada no Paciente/estatística & dados numéricos , Grupos Raciais/estatística & dados numéricos , Estudos Retrospectivos , Programa de SEER , Fatores Socioeconômicos , Estados Unidos , População Branca/estatística & dados numéricosRESUMO
PURPOSE: Distress from being diagnosed with breast cancer can impact a woman's decision to continue taking adjuvant endocrine therapy (AET). The purpose of this study is to explore how religion and/or spirituality influence women's psychosocial adjustment to breast cancer and subsequent symptom management among women on active AET. METHODS: Semi-structured in-depth interviews were conducted with breast cancer survivors (n = 19) from California and Texas. Interview questions prompted discussion about AET and how women adjusted to a breast cancer diagnosis and treatment with AET. Interview transcripts were analyzed with a deductive grounded theory approach, and an inductive constant comparison approach was used to identify the sources of religion and spirituality. RESULTS: Religion supported women in their psychosocial adjustment to breast cancer by offering them a sense of purpose and meaning in life. It helped women make sense of their AET treatment as they persisted with it despite experiencing adverse side-effects. Spirituality played a prominent role in women's mental and physical wellbeing by facilitating positive and calm attitudes, which lessened women's fear during their cancer diagnosis and treatment. CONCLUSION: We identified that religion and/or spirituality helps women with their adjustment to breast cancer and influences their continued use and management of side-effects from AET. IMPLICATIONS FOR BREAST CANCER SURVIVORS: This study illustrates the importance of developing meaning-centered interventions that harness religion and spirituality to help women cope with AET. Our findings support the development of interventions that work to enhance AET persistence among breast cancer survivors.
Assuntos
Neoplasias da Mama/psicologia , Terapia Neoadjuvante/métodos , Religião , Espiritualidade , Idoso , Sobreviventes de Câncer/psicologia , Feminino , Humanos , Pessoa de Meia-IdadeRESUMO
For childhood cancer survivors (CCS), parents play an important role in communicating with providers and conveying patient's needs. This exploratory study examined the prevalence of cancer-related information-seeking among parents of CCS and investigated the association between parents' race/ethnicity and language preference with health communication and satisfaction with child's medical providers. One hundred and sixty CCS and their parents from two hospitals in Los Angeles County were recruited from the SEER registry. Multivariable logistic regression analyses assessed associations between parents' race/ethnicity and language preference and their health communication with their child and with their child's medical care providers. Among the parents, 29% were Spanish-speaking Hispanics, 27% English-speaking Hispanics, and 43% English-speaking non-Hispanics. Regardless of language preference, Hispanic parents were more likely than non-Hispanic parents to receive health information about their CCS's cancer from hospital sources versus the internet. There was no difference by ethnicity/language in parent satisfaction with their CCS's medical provider. Spanish-speaking Hispanic parents were more likely to report talking to their CCS about the need for cancer-related follow-up care compared to non-Hispanic English-speaking parents. These findings point to the potential importance of parents' ethnicity and language for sources of health information and frequency of communication with their CCS about their cancer care.
Assuntos
Comunicação em Saúde , Comportamento de Busca de Informação , Neoplasias/terapia , Pais/psicologia , Satisfação do Paciente/estatística & dados numéricos , Adulto , Idoso , Sobreviventes de Câncer/estatística & dados numéricos , Criança , Feminino , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , Humanos , Idioma , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente/etnologiaRESUMO
BACKGROUND: Black women are more likely to be diagnosed with later stage breast cancer compared to white women due to biological or access to care factors. Therefore, our objective was to identify whether racial/ethnic differences in patient experiences with healthcare are associated with stage at diagnosis. METHODS: We used the SEER registry data linked with patient surveys from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) completed prior to the diagnosis date. We examined responses about various aspects of their care such as the ability to get needed care, and to get care quickly. We used multivariable linear regression to examine racial/ethnic differences in patient experiences, and a multivariable ordinal logistic regression to determine the association between patient experiences and earlier stage at diagnosis. RESULTS: Of the 10,144 patients, 80.7% were non-Hispanic white, 7.6% black, 7.1% Hispanic, and 4.6% Asian. After controlling for potential confounders, black patients had significantly lower mean scores for getting care quickly (ß = - 2.78), getting needed care (ß = - 2.26), getting needed prescription drugs (ß = - 3.83), and lower ratings of their health care (ß = - 2.33) compared to white patients. More importantly, we found that black patients who reported a 1-unit increase in rating of their experiences with customer service (OR 1.04, 95% CI 1.01-1.06) and the ability to get care quickly (OR 1.03, 1.01-1.05) had higher odds of earlier stage breast cancer. CONCLUSION: Racial/ethnic minorities reported poorer patient experiences with care preceding a diagnosis of breast cancer. Better ratings among black patients were associated with earlier stage at diagnosis.
Assuntos
Neoplasias da Mama/etnologia , Neoplasias da Mama/terapia , Satisfação do Paciente , Adulto , Negro ou Afro-Americano , Idoso , Neoplasias da Mama/diagnóstico , Etnicidade , Feminino , Hispânico ou Latino , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Grupos Minoritários , Análise Multivariada , Assistência Centrada no Paciente , Sistema de Registros , Estudos Retrospectivos , Programa de SEER , Estados Unidos , População BrancaRESUMO
BACKGROUND: Adjuvant endocrine therapy (AET) significantly reduces recurrence and mortality in women with estrogen receptor-positive breast cancer. Adherence to AET is about 50-60% for 5 years, and while numerous studies have identified barriers to AET adherence, few have identified the role of social support as a facilitator. Therefore, the objective of this study is to explore the role of social support during the ongoing management of AET. METHODS: We conducted semi-structured in-depth interviews with breast cancer survivors (n = 22) who filled a prescription for AET in the previous 12 months. Women were recruited from Los Angeles, California, and Houston, Texas, between 2014 and 2015. Interview questions prompted discussion about AET and how social support affects AET adherence. We analyzed interview transcripts with a grounded theory approach and grouped social support into four categories (emotional, informational, instrumental, and appraisal), then used a thematic content analysis to identify the sources and delivery of support. RESULTS: Women described that informational support was provided by medical providers who explained the purpose, benefits, and management of AET. Emotional support in the form of reassurance, communication, and empathy was provided by family, survivorship groups, medical providers, and spirituality/religiosity. Women identified several organizations and exercises that provided them with instrumental and appraisal support in the form of physical and emotional benefits, which was also provided by family, friends, and medical providers. CONCLUSION: We identified that social support delivered to breast cancer survivors provided women with educational, physical, and emotional benefits that may play an important role in their continuation of AET.
Assuntos
Antineoplásicos Hormonais/uso terapêutico , Neoplasias da Mama/tratamento farmacológico , Sobreviventes de Câncer/psicologia , Adesão à Medicação , Recidiva Local de Neoplasia/prevenção & controle , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/patologia , Neoplasias da Mama/psicologia , Quimioterapia Adjuvante , Terapia Combinada , Emoções/fisiologia , Exercício Físico/fisiologia , Feminino , Humanos , Entrevistas como Assunto , Los Angeles/epidemiologia , Adesão à Medicação/psicologia , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Inquéritos e Questionários , Texas/epidemiologiaRESUMO
The objective of this study was to determine the feasibility and effectiveness of translating films, and whether the use of narrative is an effective vehicle for producing changes in knowledge, attitudes, and behaviors regarding cervical cancer compared with a nonnarrative film. A randomized controlled telephone trial surveyed the effectiveness of two films our team produced among a sample of 300 monolingual Spanish-speaking women, ages 25 to 45, who were of Mexican origin. Participants were recruited using random digit dialing (RDD) procedures from 2013 to 2014 in Los Angeles County and were randomly selected to view either a narrative or nonnarrative film. Data were collected by phone at baseline, 2 weeks, and 6 months after viewing. On average, participants arrived in the USA 25 years ago. The majority reported having less than high school education and limited English proficiency. Compared with their nonnarrative counterparts, women who received the cervical cancer-related information in the narrative film showed a significantly greater increase in new knowledge (p = 0.01) and in supportive attitudes about Pap tests expense (p = 0.05). Importantly, at 6 months, although not statistically significant, women who viewed the narrative film were also more likely to have had or scheduled a Pap test (62% vs 42%). Narratives are a useful and underutilized tool to communicate information about cancer prevention. These findings have important implications for the delivery of health education among Spanish-speaking, low-literacy immigrant women, and for the reduction of cancer-related disparities.
Assuntos
Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Americanos Mexicanos/psicologia , Narração , Teste de Papanicolaou/estatística & dados numéricos , Neoplasias do Colo do Útero/diagnóstico , Esfregaço Vaginal/estatística & dados numéricos , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Teste de Papanicolaou/psicologia , Inquéritos e Questionários , Estados Unidos/epidemiologia , Neoplasias do Colo do Útero/epidemiologia , Neoplasias do Colo do Útero/psicologia , Esfregaço Vaginal/psicologiaRESUMO
OBJECTIVE: Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers' quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development. METHODS: A systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement). RESULTS: Of 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status. SIGNIFICANCE OF RESULTS: Additional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.
Assuntos
Cuidadores/psicologia , Neoplasias/enfermagem , Qualidade de Vida/psicologia , Adaptação Psicológica , Humanos , Neoplasias/complicações , Neoplasias/psicologia , Assistência ao Paciente/efeitos adversos , Assistência ao Paciente/métodos , Apoio SocialRESUMO
Cervical cancer has decreased significantly over the past 30 years in some countries. However, it remains among the leading causes of cancer deaths in low-income, and racial/ethnic minority women. Cervical cancer prevention technologies are not always available. Laboratories are often not well equipped to use them. HPV information has not been widely disseminated. WHO guidelines, and US and Latin American data provide context for strategies on effective interventions to reduce cervical cancer disparities. Systemic, personal and cultural barriers, combined with decision-making guidelines, and impactful messaging can accelerate reductions in cervical cancer health inequities in the Americas.
El cáncer cervicouterino ha disminuido significativamente en los últimos 30 años, pero sigue siendo una de las principales causas de muerte entre mujeres de bajos recursos y minorías raciales/étnicas. Las tecnologías preventivas del cáncer cervicouterino no están siempre disponibles y los laboratorios no están siempre bien equipados para utilizarlas. La información sobre el VPH no ha sido difundida ampliamente. La OMS y datos de EEUU y Latinoamérica ofrecen estrategias para reducir el cáncer cervicouterino. El entendimiento de las barreras sistémicas, personales y culturales, dentro de un marco de toma de decisiones, y mensajes innovadores puede reducir las barreras asociadas con el cáncer cervicouterino en las Américas.
Assuntos
Detecção Precoce de Câncer/métodos , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias do Colo do Útero/diagnóstico , América , Informação de Saúde ao Consumidor/métodos , Características Culturais , Tomada de Decisões , Árvores de Decisões , Escolaridade , Feminino , Disparidades nos Níveis de Saúde , Humanos , Idioma , Programas de Rastreamento/métodos , Grupos Minoritários , Infecções por Papillomavirus/diagnóstico , Guias de Prática Clínica como Assunto , Neoplasias do Colo do Útero/etnologia , Neoplasias do Colo do Útero/prevenção & controle , Organização Mundial da SaúdeRESUMO
OBJECTIVE: Although cancer survival rates continue to improve, overall disparities persist for ethnic minority survivors, who have a disproportionately high risk of experiencing poor quality of life, despite documented higher levels of self-reported spirituality. Yet little is known about the relationship between spirituality and social support and health outcomes among Hispanic survivors. This study examined (1) differences between Hispanic and non-Hispanic white survivors on health, social support, and spirituality and (2) the potential mediating roles of mental health and emotional distress on general health perceptions. METHODS: We analyzed data (N = 7778) from the American Cancer Society's Study of Cancer Survivors-II, a national cross-sectional study of adult cancer survivors. Preliminary analysis compared sociodemographic and medical characteristics between the 2 groups to identify significant covariates. Structural equation modeling assessed whether mental health and emotional distress mediate the impact of social support and spirituality on Hispanics' general health perceptions. RESULTS: Overall, 693 survivors were Hispanic and 7085 were non-Hispanic whites. Hispanics reported poorer health and were more likely to have comorbid conditions such as diabetes and depression compared with non-Hispanic whites. Structural equation modeling indicated that the impact of spirituality on general health perceptions was fully mediated through mental health. Emotional distress did not have a direct effect on general health perceptions nor did it mediate effects of spirituality and social support and on general health perceptions. There was a mediated effect of social support on general health perceptions. CONCLUSIONS: Spirituality is an important factor in the health of Hispanic survivors. Future studies should explore the impact and effectiveness of spiritual interventions and the beneficial effect for mental health on general health perceptions.
Assuntos
Sobreviventes de Câncer/psicologia , Hispânico ou Latino/psicologia , Neoplasias/psicologia , Apoio Social , Espiritualidade , Adulto , Idoso , American Cancer Society , Estudos Transversais , Depressão/psicologia , Feminino , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Grupos Minoritários , Neoplasias/etnologia , Qualidade de Vida/psicologia , Fatores Socioeconômicos , Estados UnidosRESUMO
Purpose: Although participation of adolescents and young adults (AYAs) in cancer clinical trials (CCTs, i.e., cancer-directed treatment studies) is low, their decision-making perspectives are not well understood, especially following recent diagnosis. Methods: Semistructured interviews with younger AYAs (15-21 years old) eligible for a CCT were to be held within 60 days of beginning treatment at Children's Hospital Los Angeles, an academic pediatric hospital. Using grounded theory methods, key themes regarding CCT participation, barriers, and facilitators were identified from interview transcripts. Thematic saturation was confirmed. Results: Of nine participants, three were <18 years old, four Hispanic, six male, six diagnosed with leukemia, eight enrolled in a CCT, and eight also enrolled in ancillary studies. Four overarching themes emerged: (1) Initial Consent encompassed the first discussion of CCT with patients reflecting positive and negative effects of timing, decisional role, and the emotional impact following cancer diagnosis; (2) Informing Participation involved decision-making processes, specific knowledge, comprehension, and external influences; (3) Participant Relationships emphasized the importance of communication and relationships with providers and parents; and (4) Patient Determinants centered on motives from different perspectives, pre-conceived attitudes, and understanding of CCTs. Conclusion: Recommendations for improving CCT participation among younger AYAs include separating the diagnosis/treatment and CCT discussions, assigning AYAs a meaningful decisional role, having ongoing provider conversations, designing trials to minimize burden, and developing age-appropriate decision aids.
Assuntos
Leucemia , Neoplasias , Adolescente , Adulto , Criança , Humanos , Masculino , Adulto Jovem , Comunicação , Hospitais Pediátricos , Neoplasias/terapia , Neoplasias/psicologia , Pesquisa Qualitativa , Ensaios Clínicos como Assunto , Participação do PacienteRESUMO
PURPOSE: While limited, dyadic research demonstrates the interdependent relationship between the health and adjustment after treatment between cancer survivors and caregivers. We examined interrelationships between coping resources and mental health among childhood cancer survivors (CCS)-parent dyads. METHODS: One hundred sixty CCS-parent dyads from the Project Forward pilot study completed validated questions assessing social support, religiosity, spirituality, depressive symptoms, and perceived stress. Bidirectional associations were identified with path analysis utilizing the actor-partner interdependence model (APIM). We used a multigroup approach to test for the moderating effects by Hispanic ethnicity on these relationships. RESULTS: Mean age of CCS was 20 years old, 51% female, 30% diagnosed with leukemia, and mean of 7 years from diagnosis. The mean age of parents was 49 years old and 89% were mothers. For both CCS and parents, perceived social support was inversely associated with their depressive symptoms and perceived stress (e.g., actor effects). Parents' social support was not significantly associated with CCS's depressive symptoms and stress. However, higher perceived social support by the CCS was inversely associated with parents' depressive symptoms (ß = - 0.202, p < 0.01) and perceived stress (ß = - 0.164, p < 0.05) (e.g., partner effects). Additional actor effects were observed between spirituality, religiosity, and depressive systems when we explored the moderating effects of Hispanic ethnicity. CONCLUSION: Partner effects of social support among CCS-parent dyads may influence psychological distress. IMPLICATION FOR CANCER SURVIVORS: Our findings on parent-child associations between social support and psychosocial well-being imply that survivorship care can be enhanced when the social support needs of both survivors and their parents are addressed together.
RESUMO
Background: As Asian American breast cancer incidence rises, it is necessary to investigate the origins of differential breast cancer outcomes among Asian ethnic subgroups. This study aimed to examine disparities in delays of breast cancer surgery among Asian ethnic subgroups. Methods: We obtained California Cancer Registry data on female breast cancer diagnoses and treatment from 2012 to 2017. Our main independent variable was patient race and ethnicity, including 6 Asian ethnic subgroups. Dependent variables included time to surgical treatment for breast cancer and receipt of surgical treatment within 30 and 90 days of diagnosis. We conducted multivariable logistic regression to determine the odds of receiving surgery within 30 and 90 days of diagnosis and multivariable Cox proportional hazards regression to determine the risk of prolonged time to surgery. Results: In our cohort of 93 168 breast cancer patients, Hispanic (odds ratio [OR] = 0.86, 95% confidence interval [CI] = 0.82 to 0.89) and non-Hispanic Black (OR = 0.83, 95% CI = 0.78 to 0.88) patients were statistically significantly less likely than non-Hispanic White patients to receive surgery within 30 days of breast cancer diagnosis, whereas Asian Indian or Pakistani (OR = 1.23, 95% CI = 1.09 to 1.40) and Chinese (OR = 1.30, 95% CI = 1.20 to 1.40) patients were statistically significantly more likely to receive surgery within 30 days of diagnosis. Conclusions: This large, population-based retrospective cohort study of female breast cancer patients is the first, to our knowledge, to demonstrate that time to surgical treatment is not equal for all Asians. Distinct differences among Asian ethnic subgroups suggest the necessity of further investigating breast cancer treatment patterns to fully understand and target disparities in breast cancer treatment.
Assuntos
Povo Asiático , Neoplasias da Mama/cirurgia , Tempo para o Tratamento , Adulto , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Asiático/estatística & dados numéricos , Povo Asiático/classificação , Povo Asiático/etnologia , Povo Asiático/estatística & dados numéricos , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/etnologia , California , Intervalos de Confiança , Feminino , Hispânico ou Latino/estatística & dados numéricos , Humanos , Modelos Logísticos , Pessoa de Meia-Idade , Razão de Chances , Modelos de Riscos Proporcionais , Sistema de Registros , Fatores de Tempo , População Branca/estatística & dados numéricosRESUMO
PURPOSE: The triad of communication between young adult childhood cancer survivors (YACCSs), their parents, and their medical providers is an important process in managing health care engagement. This study sought to identify communication patterns among this triad, factors associated with communication, and engagement of survivorship care. METHODS: We analyzed data from Project Forward, a population-based study that surveyed YACCSs and their parents. YACCSs were on average age 20 years, 7 years from diagnosis, 50% female, and 57% identified as Hispanic/Latino (N = 160 dyads). Latent class analysis of nine communication indicators from parent and YACCS surveys identified distinct classes of communication between YACCSs, parents, and medical providers. Associations between resulting classes and YACCS/parent characteristics were examined using multinomial logistic regression. Logistic regression was used to examine the association between communication classes and cancer-related follow-up care. RESULTS: Latent class analysis identified three classes of triad communication: (1) high health care-focused communication (37.5%), (2) high comprehensive communication (15.6%), and (3) overall low communication (46.9%). After adjusting for covariates, greater time since diagnosis was associated with reduced odds of membership in class 2 while dyads with Spanish-speaking Hispanic parents were more likely to be in class 2 (v class 3). Additionally, YACCSs who were in either of the high communication groups were more likely to have received recent follow-up care. CONCLUSION: Examining language preference provides an important contextual understanding as we found Spanish-speaking Hispanic parents engaged in high communication, which was associated with cancer-related follow-up care. Yet, our results also support the need to enhance communication between this triad to improve outcomes.
Assuntos
Sobreviventes de Câncer , Neoplasias , Adulto , Assistência ao Convalescente , Criança , Comunicação , Etnicidade , Feminino , Hispânico ou Latino , Humanos , Idioma , Masculino , Neoplasias/complicações , Neoplasias/terapia , Pais , Adulto JovemRESUMO
PURPOSE: Many childhood cancer survivors experience disparities due to barriers to recommended survivorship care. With an aim to demonstrate evidence-based approaches to alleviate barriers and decrease disparities, we conducted a scoping review of (1) proposed strategies and (2) evaluated interventions for improving pediatric cancer survivorship care. METHODS: We searched research databases (PubMed, CINAHL, and PsycINFO), research registries, and grey literature (websites of professional organizations and guideline clearing houses) for guidelines and published studies available through October 2020 (scoping review registration: https://doi.org/10.17605/OSF.IO/D8Q7Y ). RESULTS: We identified 16 proposed strategies to address disparities and barriers endorsed by professional organizations including clinical practice guidelines (N=9), policy statements (N=4), and recommendations (N=3). Twenty-seven published studies evaluated an intervention to alleviate disparities or barriers to survivorship care; however, these evaluated interventions were not well aligned with the proposed strategies endorsed by professional organizations. Most commonly, interventions evaluated survivorship care plans (N=11) or models of care (N=11) followed by individual survivorship care services (N=9). Interventions predominantly targeted patients rather than providers or systems and used technology, education, shared care, collaboration, and location-based interventions. CONCLUSIONS: Published studies aimed at overcoming disparities and barriers to survivorship care for childhood cancer survivors revealed that gaps remain between published recommendations and empirical evaluations of interventions aiming to reduce barriers and disparities. IMPLICATIONS FOR CANCER SURVIVORS: Additional research is needed to identify evidence-based interventions to improve survivorship care for childhood cancer survivors.
Assuntos
Sobreviventes de Câncer , Neoplasias , Criança , Humanos , Neoplasias/terapia , SobrevivênciaRESUMO
PURPOSE: Black patients with cancer report worse experiences with health care compared with White patients; however, little is known about what influences these ratings. The objective of this study is to explore the multilevel factors that influence global ratings of care for Black cancer survivors. METHODS: We conducted semistructured in-depth interviews with 18 Black cancer survivors. We assessed the global ratings of their personal doctor, specialist, health plan, prescription drug plan, and overall health care, and asked patients to elaborate on their rating. We analyzed the interviews with a deductive grounded theory approach using the socioecologic model to identify the individual, interpersonal, organizational, and environmental influences on Black cancer patient experiences with global ratings of care. We used an inductive constant comparison approach to identify additional themes that emerged. Two coauthors separately coded a set of transcripts and met to refine the codebook. RESULTS: On average, participants reported the highest mean rating for their specialist (9.39/10) and the lowest mean rating for their personal doctor (7.33/10). Emerging themes that influenced patient ratings were perceptions about their interaction with medical providers, physician communication, the doctor's expertise, and aspects of the physical facilities. Global ratings of care measures were widely influenced by patient interactions with their providers that were empathetic, nondiscriminatory, and where the doctors addressed all concerns. CONCLUSION: This grounded theory study identifies multiple aspects of health care that intervention researchers, health care administrators, and providers may target to improve Black cancer patient experiences with care.