RESUMO
OBJECTIVE: Cancer survivors play an important role in coordinating their follow-up care and making treatment-related decisions. Little is known about how modifiable factors such as social support are associated with active participation in follow-up care. This study tests associations between social support, cancer-related follow-up care use, and self-efficacy for participation in decision-making related to follow-up care (SEDM). We also identified sociodemographic and clinical factors associated with social support among long-term survivors. METHODS: The FOllow-up Care Use among Survivors study is a cross-sectional, population-based survey of breast, prostate, colon, and gynecologic cancer survivors (n=1522) 4-14 years post-diagnosis. Multivariable regression models were used to test associations between perceived social support (tangible and emotional/informational support modeled separately), follow-up care use (past 2 years), and SEDM, as well as to identify factors associated with perceived support. RESULTS: Neither support type was associated with follow-up care use (all p>0.05), although marital status was uniquely, positively associated with follow-up care use (p<0.05). Both tangible support (B for a standard deviation increase (SE)=9.75(3.15), p<0.05) and emotional/informational support (B(SE)=12.61(3.05), p<0.001) were modestly associated with SEDM. Being married, having adequate financial resources, history of recurrence, and better perceived health status were associated with higher perceived tangible and emotional support (all p<0.05). CONCLUSIONS: While perceived social support may facilitate survivor efficacy for participation in decision-making during cancer follow-up care, other factors, including marital satisfaction, appear to influence follow-up care use. Marital status and social support may be important factors to consider in survivorship care planning.
Assuntos
Tomada de Decisões , Serviços de Saúde/estatística & dados numéricos , Neoplasias/psicologia , Autoeficácia , Apoio Social , Sobreviventes/psicologia , Adulto , California , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Qualidade de Vida/psicologia , Fatores SocioeconômicosRESUMO
PURPOSE: The growing population of non-Hodgkin lymphoma (NHL) survivors living longer with high physical and psychological treatment burden, in combination with the projected shortage of medical professionals, necessitates redesigning cancer follow-up care. This study examined follow-up care patterns, factors associated with follow-up care, and attitudes towards follow-up care among NHL survivors. METHODS: We surveyed survivors of aggressive NHL 2 to 5 years post-diagnosis (N = 363) using a population-based sample from the Los Angeles County Surveillance Epidemiology and End Results registry. RESULTS: Most survivors (82 %) received cancer-related follow-up care in the past year from an oncologist. History of recurrence, more comorbidities, more symptoms, and a shorter survivor-oncologist relationship were associated with high-frequency care with the oncologist [(≥5 visits in the past year), p < 0.05]. Many survivors followed up by oncologists (71 %) also saw a primary care provider (PCP) and 47 % also saw both a PCP and other specialists. Factors associated with seeing a PCP in addition to an oncologist included more symptoms, more health information needs, no history of recurrence, perceived excellent quality of cancer follow-up care, and fewer visits with the oncologist (p < 0.05). Survivors generally reported high reassurance from, and low negative anticipation towards, follow-up care. CONCLUSIONS: The high proportion of NHL survivors receiving care from multiple physicians, and the sizable proportion (â¼30 %) who have not recently seen a PCP, suggests that coordinating care across specialties is critical to ensure comprehensive, non-duplicative care. Understanding factors associated with cancer-related follow-up is a first step towards more effective, efficient, patient-centered care.
Assuntos
Linfoma não Hodgkin/terapia , Oncologia/métodos , Assistência Centrada no Paciente/métodos , Médicos de Atenção Primária , Especialização , Idoso , Coleta de Dados , Feminino , Seguimentos , Humanos , Los Angeles/epidemiologia , Linfoma não Hodgkin/mortalidade , Masculino , Pessoa de Meia-Idade , Recidiva Local de Neoplasia/terapia , Sistema de Registros , Programa de SEER , SobreviventesRESUMO
BACKGROUND: Non-Hodgkin lymphoma (NHL) is the fifth most common cancer among men and women. Patients with aggressive NHL receive intense medical treatments that can significantly compromise health-related quality of life (HRQOL). However, knowledge of HRQOL and its correlates among survivors of aggressive NHL is limited. METHODS: Self-reported data on HRQOL (physical and mental function, anxiety, depression, and fatigue) were analyzed for 319 survivors of aggressive NHL. Survivors 2 to 5 years postdiagnosis were selected from the Los Angeles County Cancer Registry. Bivariate and multivariable methods were used to assess the influence of sociodemographic, clinical, and cognitive health-appraisal factors on survivors' HRQOL. RESULTS: After accounting for other covariates, marital status was associated with all HRQOL outcomes (P < .05). Younger survivors reported worse mental function and higher levels of depression, anxiety, and fatigue (P < .01). Survivors who had more comorbid conditions or lacked private health insurance reported worse physical and mental function and higher levels of depression and fatigue (P < .05). Survivors who experienced a recurrence reported worse physical function and higher levels of depression and fatigue (P < .05). With the exception of a nonsignificant association between perceived control and physical function, greater perceptions of personal control and health competence were associated significantly with more positive HRQOL outcomes (P < .01). CONCLUSIONS: The current results indicated that survivors of aggressive NHL who are younger, are unmarried, lack private insurance, or experience greater illness burden may be at risk for poorer HRQOL. Cognitive health-appraisal factors were strongly related to HRQOL, suggesting potential benefits of interventions focused on these mutable factors for this population.
Assuntos
Nível de Saúde , Linfoma não Hodgkin/reabilitação , Qualidade de Vida , Sobreviventes/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Cognição/fisiologia , Feminino , Humanos , Linfoma não Hodgkin/mortalidade , Linfoma não Hodgkin/patologia , Linfoma não Hodgkin/fisiopatologia , Masculino , Pessoa de Meia-Idade , Invasividade Neoplásica , Autoeficácia , Sobreviventes/psicologiaRESUMO
The past two decades have witnessed dramatic advances in palliative and end-of-life care research with increased understanding of the burden of life-limiting diseases on patients, families, clinicians, and our healthcare system; and researchers have documented palliative care interventions that improve patient and family outcomes and reduce the costs of care (Detering, Hancock, Reade, & Silvester, 2010). These advances have led to a new era of palliative and end-of-life care research and practice with widespread recognition of its accomplishments and successes. Consequently, we now have an important opportunity to reassess our recent successes and challenges and to identify the goals and benchmarks that will ensure ongoing robust advances in this now-recognized and critical scientific area. High-quality palliative and end-of-life care will be best informed by methodologically strong research efforts that generate a body of evidence with the capacity to support and direct care and effect changes in practice. It is in this context that the National Institute of Nursing Research conceptualized and led a Summit titled The Science of Compassion: Future Directions in End-of-Life and Palliative Care Research in August, 2011. In this summary article, we present brief overviews of the six articles chosen for this Special Issue of Nursing Outlook, examine their key conclusions, articulate gaps and needs, and discuss next steps in palliative and end-of-life care research through the lens of these six topics.
Assuntos
Pesquisa em Enfermagem Clínica/tendências , Cuidados Paliativos , Assistência Terminal , HumanosRESUMO
BACKGROUND: The growing number of cancer survivors combined with a looming shortage of oncology specialists will require greater coordination of post-treatment care responsibilities between oncologists and primary care physicians (PCPs). However, data are limited regarding these physicians' views of cancer survivors' care. OBJECTIVE: To compare PCPs and oncologists with regard to their knowledge, attitudes, and practices for follow-up care of breast and colon cancer survivors. DESIGN AND SUBJECTS: Mailed questionnaires were completed by a nationally representative sample of 1,072 PCPs and 1,130 medical oncologists in 2009 (cooperation rate = 65%). Sampling and non-response weights were used to calculate estimates to reflect practicing US PCPs and oncologists. MAIN MEASURES: PCPs and oncologists reported their 1) preferred model for delivering cancer survivors' care; 2) assessment of PCPs' ability to perform follow-up care tasks; 3) confidence in their knowledge; and 4) cancer surveillance practices. KEY RESULTS: Compared with PCPs, oncologists were less likely to believe PCPs had the skills to conduct appropriate testing for breast cancer recurrence (59% vs. 23%, P < 0.001) or to care for late effects of breast cancer (75% vs. 38%, P < 0.001). Only 40% of PCPs were very confident of their own knowledge of testing for recurrence. PCPs were more likely than oncologists to endorse routine use of non-recommended blood and imaging tests for detecting cancer recurrence, with both groups departing substantially from guideline recommendations. CONCLUSION: There are significant differences in PCPs' and oncologists' knowledge, attitudes, and practices with respect to care of cancer survivors. Improving cancer survivors' care may require more effective communication between these two groups to increase PCPs' confidence in their knowledge, and must also address oncologists' attitudes regarding PCPs' ability to care for cancer survivors.
Assuntos
Atitude do Pessoal de Saúde , Oncologia , Medicina , Neoplasias/terapia , Médicos de Atenção Primária/psicologia , Sobreviventes , Adulto , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Médicos/psicologia , Inquéritos e QuestionáriosRESUMO
PURPOSE: Patients with breast cancer on adjuvant chemotherapy can experience weight gain and concurrent losses in muscle mass. Exercise interventions can prevent these changes, but time and travel pose barriers to participation. The Survivor Training for Enhancing Total Health (STRENGTH) trial assessed the feasibility and impact of 2 home-based interventions. PATIENTS AND METHODS: Ninety premenopausal patients with breast cancer on adjuvant chemotherapy were randomized to a calcium-rich diet (CA) intervention (attention control) or to 2 experimental arms: a CA + exercise (EX) arm or a CA + EX and high fruit and vegetable, low-fat diet (FVLF) arm. Exercise arms included aerobic and strength-training exercises. Body composition, weight status, waist circumference, dietary intake, physical activity, quality of life, anxiety, depression, serum lipids, sex hormone binding globulin, insulin, proinsulin, C-reactive protein, interleukin-1B, and tumor-necrosis factor receptor-II were measured at baseline and at 6-month follow-up. RESULTS: Accrual targets were achieved and modest attrition was observed (8.8%). Self-reports suggest increased calcium intakes in all arms, and higher fruit and vegetable and lower fat intake in the CA + EX + FVLF arm; no differences in physical activity were observed. While measures of adiposity were generally lower in the CA + EX + FVLF arm, the only significant difference was in percentage of body fat (arms and legs); change in scores (mean +/- standard deviation) were +0.7% +/- 2.3% (CA); +1.2% +/- 2.7% (CA + EX); and +0.1% +/- 2% (CA + EX + FVLF; P = .047). Lean body mass was largely preserved, even in the control arm (net gain of 452 g +/- 2395 g). No differences were observed in other endpoints. CONCLUSION: Diet and exercise interventions can prevent weight gain and adverse body composition changes, but more research is needed to determine optimally effective interventions that can be implemented during active treatment and that promote adherence.
Assuntos
Composição Corporal/efeitos dos fármacos , Neoplasias da Mama/tratamento farmacológico , Quimioterapia Adjuvante/efeitos adversos , Dieta , Exercício Físico , Adulto , Cálcio , Dieta com Restrição de Gorduras , Estudos de Viabilidade , Feminino , Humanos , Pessoa de Meia-Idade , Pré-Menopausa , Aumento de Peso/efeitos dos fármacosRESUMO
In the setting of an international conference on malignant bowel obstruction as a model for randomized controlled trials (RCTs) in palliative care, we discuss the importance of incorporating prospective cultural considerations into research design. The approach commonly used in biomedical research has traditionally valued the RCT as the ultimate "way of knowing" about how to best treat a medical condition. The foremost limitation of this approach is the lack of recognition of the impact of cultural viewpoints on research outcomes. We propose that interest relevant to cultural viewpoints should be emphasized in conceptualizing and interpreting research questions, designs, and results. In addition to recognizing our cultural biases as individuals and researchers, we recommend two major shifts in designing and implementing RCTs: 1) inclusion of a multidisciplinary team of researchers to inform the diversity of perspectives and expertise brought to the research, and 2) use of mixed methods of inquiry, reflecting both deductive and inductive modes of inference.
Assuntos
Pesquisa Biomédica , Cultura , Neoplasias Intestinais/etnologia , Obstrução Intestinal/etnologia , Cuidados Paliativos/métodos , Humanos , Neoplasias Intestinais/complicações , Obstrução Intestinal/etiologia , Cuidados Paliativos/psicologiaRESUMO
PURPOSE: Cancer survivors are at increased risk for several comorbid conditions, and many seek lifestyle change to reduce dysfunction and improve long-term health. To better understand the impact of cancer on adult survivors' health and health behaviors, a review was conducted to determine (1) prevalent physical health conditions, (2) persistent lifestyle changes, and (3) outcomes of previous lifestyle interventions aimed at improving health within this population. METHODS: Relevant studies from 1966 and beyond were identified through MEDLINE and PubMed searches. RESULTS: Cancer survivors are at increased risk for progressive disease but also for second primaries, osteoporosis, obesity, cardiovascular disease, diabetes, and functional decline. To improve overall health, survivors frequently initiate diet, exercise, and other lifestyle changes after diagnosis. However, those who are male, older, and less educated are less likely to adopt these changes. There also is selective uptake of messages, as evidenced by findings that only 25% to 42% of survivors consume adequate amounts of fruits and vegetables, and approximately 70% of breast and prostate cancer survivors are overweight or obese. Several behavioral interventions show promise for improving survivors' health-related outcomes. Oncologists can play a pivotal role in health promotion, yet only 20% provide such guidance. CONCLUSION: With 64% of cancer patients surviving > 5 years beyond diagnosis, oncologists are challenged to expand their focus from acute care to managing the long-term health consequences of cancer. Although more research is needed, opportunities exist for oncologists to promote lifestyle changes that may improve the length and quality of life of their patients.
Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde , Acontecimentos que Mudam a Vida , Neoplasias/terapia , Sobreviventes , Comorbidade , Humanos , Estilo de VidaRESUMO
Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients' information needs and the sources from which they receive information. The majority of articles focused on information needs and sources during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent information source was health professionals (27.3%). We examined patients' information needs and sources along the continuum of care and found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also important. Future research should examine cancer patients' information needs and sources throughout their cancer journey.
Assuntos
Necessidades e Demandas de Serviços de Saúde , Serviços de Informação/organização & administração , Neoplasias , Educação de Pacientes como Assunto/organização & administração , Adaptação Psicológica , Austrália , Canadá , Coleta de Dados , Europa (Continente) , Pessoal de Saúde , Linhas Diretas , Humanos , Internet , Meios de Comunicação de Massa , Neoplasias/diagnóstico , Neoplasias/psicologia , Neoplasias/terapia , Prognóstico , Recuperação de Função Fisiológica , Projetos de Pesquisa , Fatores Socioeconômicos , Sobreviventes/psicologia , Resultado do Tratamento , Reino Unido , Estados UnidosRESUMO
PURPOSE: Adult cancer survivors have complex medical profiles that may include chronic conditions beyond cancer. Few studies have examined the prevalence of comorbidities before and after a cancer diagnosis. METHODS: Cancer cases were sampled from two California cancer registries to examine medical conditions (ever experienced and developed after cancer) among 1,527 long-term breast, prostate, colorectal, and gynecological cancer survivors by socio-demographic, cancer-related, and health behavior variables. RESULTS: On average, survivors reported five medical conditions ever diagnosed (95 % CI, 4.8, 5.1) and 1.9 conditions (95 % CI, 1.8, 2.0) diagnosed after cancer. Breast cancer survivors reported the highest (5.8 ever, 2.9 post-cancer) and prostate survivors the lowest (4.0 ever, 1.0 post-cancer) comorbidity burden. Higher comorbidity burden was associated with older age, being a breast cancer survivor, divorced, widowed or separated, non-Hispanic White, overweight or obese, and not receiving chemotherapy. Breast and endometrial cancer survivors, as well as those more than 10 years post-diagnosis, obese, or physically inactive were more likely to report that these comorbidities occurred after cancer. Cancer treatment type, smoking, age, race/ethnicity, marital status, and education were not significant predictors of comorbidities acquired post-cancer. CONCLUSIONS: Cancer survivors report a large number of medical conditions, many identified after a cancer diagnosis. Findings suggest that time since cancer diagnosis, body mass index, and activity level are important contextual variables when managing survivor's post-treatment follow-up care. IMPLICATIONS FOR CANCER SURVIVORS: Survivors may benefit when health professionals recommend specific strategies to achieve a healthy weight and regular physical activity for better long-term health outcomes after cancer.
Assuntos
Neoplasias/epidemiologia , Sobreviventes/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Índice de Massa Corporal , California/epidemiologia , Comorbidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/terapia , Obesidade/epidemiologia , Sobrepeso/epidemiologia , Prevalência , Fatores de Risco , Fumar/epidemiologiaRESUMO
IMPORTANCE: For patients with limited prognosis, some medication risks may outweigh the benefits, particularly when benefits take years to accrue; statins are one example. Data are lacking regarding the risks and benefits of discontinuing statin therapy for patients with limited life expectancy. OBJECTIVE: To evaluate the safety, clinical, and cost impact of discontinuing statin medications for patients in the palliative care setting. DESIGN, SETTING, AND PARTICIPANTS: This was a multicenter, parallel-group, unblinded, pragmatic clinical trial. Eligibility included adults with an estimated life expectancy of between 1 month and 1 year, statin therapy for 3 months or more for primary or secondary prevention of cardiovascular disease, recent deterioration in functional status, and no recent active cardiovascular disease. Participants were randomized to either discontinue or continue statin therapy and were monitored monthly for up to 1 year. The study was conducted from June 3, 2011, to May 2, 2013. All analyses were performed using an intent-to-treat approach. INTERVENTIONS: Statin therapy was withdrawn from eligible patients who were randomized to the discontinuation group. Patients in the continuation group continued to receive statins. MAIN OUTCOMES AND MEASURES: Outcomes included death within 60 days (primary outcome), survival, cardiovascular events, performance status, quality of life (QOL), symptoms, number of nonstatin medications, and cost savings. RESULTS: A total of 381 patients were enrolled; 189 of these were randomized to discontinue statins, and 192 were randomized to continue therapy. Mean (SD) age was 74.1 (11.6) years, 22.0% of the participants were cognitively impaired, and 48.8% had cancer. The proportion of participants in the discontinuation vs continuation groups who died within 60 days was not significantly different (23.8% vs 20.3%; 90% CI, -3.5% to 10.5%; P=.36) and did not meet the noninferiority end point. Total QOL was better for the group discontinuing statin therapy (mean McGill QOL score, 7.11 vs 6.85; P=.04). Few participants experienced cardiovascular events (13 in the discontinuation group vs 11 in the continuation group). Mean cost savings were $3.37 per day and $716 per patient. CONCLUSIONS AND RELEVANCE: This pragmatic trial suggests that stopping statin medication therapy is safe and may be associated with benefits including improved QOL, use of fewer nonstatin medications, and a corresponding reduction in medication costs. Thoughtful patient-provider discussions regarding the uncertain benefit and potential decrement in QOL associated with statin continuation in this setting are warranted. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT01415934.
Assuntos
Doenças Cardiovasculares , Transtornos Cognitivos , Inibidores de Hidroximetilglutaril-CoA Redutases/administração & dosagem , Neoplasias , Cuidados Paliativos/métodos , Idoso , Idoso de 80 Anos ou mais , Doenças Cardiovasculares/complicações , Doenças Cardiovasculares/fisiopatologia , Doenças Cardiovasculares/prevenção & controle , Transtornos Cognitivos/complicações , Transtornos Cognitivos/diagnóstico , Transtornos Cognitivos/fisiopatologia , Transtornos Cognitivos/terapia , Feminino , Humanos , Expectativa de Vida , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/diagnóstico , Neoplasias/fisiopatologia , Neoplasias/terapia , Gravidade do Paciente , Prognóstico , Medição de Risco , Resultado do Tratamento , Suspensão de TratamentoRESUMO
With continued advances in strategies to detect cancer early and treat it effectively along with the aging of the population, the number of individuals living years beyond a cancer diagnosis can be expected to continue to increase. Although beneficial and often lifesaving against the diagnosed malignancy, most therapeutic modalities for cancer are associated with a spectrum of late complications ranging from minor and treatable to serious or, occasionally, potentially lethal. Taken as a whole, investigators conducting research among long-term cancer survivors (those 5 years or more beyond cancer diagnosis) are reporting that long-term adverse outcomes are more prevalent, serious, and persistent than expected in survivors of both pediatric and adult cancer. However, the long-term and late effects of cancer and its treatment remain poorly documented and understood among those diagnosed as adults. These data underscore the need for continued research in this ever-growing portion of the cancer survivorship spectrum. This article examines (1) definitional issues relevant to cancer survivorship, (2) the evolving paradigm of cancer survivorship research, (3) prevalence data for cancer survivors, (4) research needs and issues of particular relevance to long-term cancer survivors, and (5) cancer survivorship as a scientific research area with an overview of physiologic/medical sequelae of cancer diagnosis and treatment and the grading of late effects. A large and growing community of cancer survivors is one of the major achievements of cancer research over the past 3 decades. Both length and quality of survival are important endpoints. Many cancer survivors are at risk for and develop physiologic and psychosocial late and long-term effects of cancer treatment that may lead to premature mortality and morbidity. Interventions-therapeutic and lifestyle-may carry the potential to treat or ameliorate these late effects and must be developed, examined, and disseminated if found effective.
Assuntos
Neoplasias/mortalidade , Neoplasias/terapia , Pesquisa/tendências , Sobreviventes/estatística & dados numéricos , Humanos , Taxa de Sobrevida/tendências , Sobreviventes/psicologiaAssuntos
Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Neoplasias , Sobreviventes/estatística & dados numéricos , Adulto , Idoso , Criança , Comorbidade , Terapias Complementares/psicologia , Terapias Complementares/estatística & dados numéricos , Seguimentos , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Linfoma/psicologia , Linfoma/terapia , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida , Pesquisa , Sobreviventes/psicologia , Terapêutica/efeitos adversos , Populações VulneráveisRESUMO
PURPOSE: The population of cancer survivors is large and growing. Yet after successful completion of treatment, many experience chemotherapy-related late or long-term effects (LEs). The extent to which physicians are aware of LEs is unknown. METHODS: We conducted a nationally representative survey of 1,130 oncologists and 1,072 primary care providers (PCPs). Respondents were asked to select the LEs they had either observed or seen reported for five chemotherapy agents used to treat breast and colon cancers. We described and compared oncologists' and PCPs' awareness of the specified LEs. Using multivariate logistic regression models, we determined predictors of physicians' awareness of the main LEs associated with the agents. RESULTS: Almost all oncologists (95%) reported awareness of cardiac dysfunction as an LE of doxorubicin and peripheral neuropathy as an LE of paclitaxel (97%) and oxaliplatin (97%). These LEs were reported by 55%, 27%, and 22% of PCPs, respectively. Most oncologists reported awareness of premature menopause (71%) and secondary malignancies (62%) as LEs of cyclophosphamide, compared with only 15% and 17% of PCPs, respectively. Main LEs associated with all four agents were identified by 65% of oncologists and only 6% of PCPs. CONCLUSION: Although more than half of PCPs were aware of cardiac dysfunction as an LE of doxorubicin, awareness of other LEs was limited. Because PCPs may not be directly exposed to chemotherapy-related LEs, oncologists must communicate this information to PCPs as patients transition to primary care settings. Education for all providers caring for the growing population of cancer survivors is needed.
Assuntos
Atitude do Pessoal de Saúde , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Oncologia , Médicos de Atenção Primária , Médicos , Sobreviventes , Adulto , Idoso , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto JovemRESUMO
Palliative care has faced moral and ethical challenges when conducting research involving human subjects. There are currently no resources to guide institutional review boards (IRBs) in applying standard ethical principles and terms-in a specific way-to palliative care research. Using as a case study a recently completed multisite palliative care clinical trial, this article provides guidance and recommendations for both IRBs and palliative care investigators to facilitate communication and attain the goal of conducting ethical palliative care research and protecting study participants while advancing the science. Beyond identifying current challenges faced by palliative care researchers and IRBs reviewing palliative care research, this article suggests steps that the palliative care research community can take to establish a scientifically sound, stable, productive, and well-functioning relationship between palliative care investigators and the ethical bodies that oversee their work.
Assuntos
Ética em Pesquisa , Cuidados Paliativos/ética , Cuidados Paliativos/métodos , Ensaios Clínicos como Assunto/ética , Ensaios Clínicos como Assunto/métodos , Comunicação , Comitês de Ética em Pesquisa , Humanos , Estudos Multicêntricos como Assunto/ética , Estudos Multicêntricos como Assunto/métodos , PesquisadoresRESUMO
CONTEXT: The Palliative Care Research Cooperative Group (PCRC) is the first clinical trials cooperative for palliative care in the U.S. OBJECTIVES: To describe barriers and strategies for recruitment during the inaugural PCRC clinical trial. METHODS: The parent study was a multisite randomized controlled trial enrolling adults with life expectancy anticipated to be one to six months, randomized to discontinue statins (intervention) vs. to continue on statins (control). To study recruitment best practices, we conducted semistructured interviews with 18 site principal investigators (PIs) and clinical research coordinators (CRCs) and reviewed recruitment rates. Interviews covered three topics: 1) successful strategies for recruitment, 2) barriers to recruitment, and 3) optimal roles of the PI and CRC. RESULTS: All eligible site PIs and CRCs completed interviews and provided data on statin protocol recruitment. The parent study completed recruitment of 381 patients. Site enrollment ranged from 1 to 109 participants, with an average of 25 enrolled per site. Five major barriers included difficulty locating eligible patients, severity of illness, family and provider protectiveness, seeking patients in multiple settings, and lack of resources for recruitment activities. Five effective recruitment strategies included systematic screening of patient lists, thoughtful messaging to make research relevant, flexible protocols to accommodate patients' needs, support from clinical champions, and the additional resources of a trials cooperative group. CONCLUSION: The recruitment experience from the multisite PCRC yields new insights into methods for effective recruitment to palliative care clinical trials. These results will inform training materials for the PCRC and may assist other investigators in the field.
Assuntos
Cuidados Paliativos , Seleção de Pacientes , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Inibidores de Hidroximetilglutaril-CoA Redutases/uso terapêutico , Entrevistas como Assunto , Estudos Multicêntricos como Assunto , Cuidados Paliativos/métodos , Estados UnidosRESUMO
PURPOSE: We examined racial and ethnic disparities in patient-provider communication (PPC), perceived care quality, and patient activation among long-term cancer survivors. METHODS: In 2005 to 2006, survivors of breast, prostate, colorectal, ovarian, and endometrial cancers completed a mailed survey on cancer follow-up care. African American, Asian/Pacific Islander (Asian), Hispanic, and non-Hispanic white (white) survivors who had seen a physician for follow-up care in the past 2 years (n = 1,196) composed the analytic sample. We conducted linear and logistic regression analyses to identify racial and ethnic differences in PPC (overall communication and medical test communication), perceived care quality, and patient activation in clinical care (self-efficacy in medical decisions and perceived control). We further examined the potential contribution of PPC to racial and ethnic differences in perceived care quality and patient activation. RESULTS: Compared with white survivors (mean score, 85.16), Hispanic (mean score, 79.95) and Asian (mean score, 76.55) survivors reported poorer overall communication (P = .04 and P < .001, respectively), and Asian survivors (mean score, 79.97) reported poorer medical test communication (P = .001). Asian survivors were less likely to report high care quality (odds ratio, 0.47; 95% CI, 0.30 to 0.72) and reported lower self-efficacy in medical decisions (mean score, 74.71; P < .001) compared with white survivors (mean score, 84.22). No disparity was found in perceived control. PPC was positively associated with care quality (P < .001) and self-efficacy (P < .001). After adjusting for PPC and other covariates, when compared with whites, Asian disparities remained significant. CONCLUSION: Asian survivors report poorer follow-up care communication and care quality. More research is needed to identify contributing factors beyond PPC, such as cultural influences and medical system factors.
Assuntos
Comunicação , Disparidades em Assistência à Saúde , Neoplasias/terapia , Participação do Paciente , Relações Médico-Paciente , Qualidade da Assistência à Saúde , Adulto , Negro ou Afro-Americano , Idoso , Idoso de 80 Anos ou mais , Povo Asiático , Feminino , Hispânico ou Latino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Neoplasias/etnologia , Sobreviventes , População BrancaRESUMO
INTRODUCTION: Post-treatment follow-up represents a crucial aspect of quality cancer care; however, data are lacking regarding follow-up care experiences, perception of provider involvement in care, and perceived quality of care from diverse samples of long-term survivors diagnosed as adults. METHODS: Questionnaires were mailed in 2005 to 2006 to breast, prostate, colorectal, endometrial, and ovarian cancer survivors (4 to 14 years after diagnosis), sampled from California SEER cancer registries. RESULTS: Most survivors (n = 1,490) reported recent follow-up care (68.7%), generally from oncology specialists only (47.4%) or shared between oncology and primary care providers (PCPs; 27.6%). Most survivors reported follow-up care advice (79.9%); fewer reported late-effects advice or receipt of a treatment summary (41.7% and 19.9%, respectively). Survivors who identified a PCP as their main follow-up care physician were as likely as those identifying an oncology specialist to rate their care as high quality (odds ratio [OR], 2.56; 95% CI, 0.98 to 6.74); however, survivors who could not identify a main follow-up care provider were less likely to report high-quality care (OR, 0.20; 95% CI, 0.08 to 0.50). Compared with follow-up care by an oncology specialist only, care by a PCP only was associated with a lower quality-of-care rating (OR, 0.34; 95% CI, 0.13 to 0.91), but there was no significant difference in quality rating by survivors when care was shared by an oncology specialist and PCP compared with an oncology specialist only. CONCLUSION: Long-term survivors commonly report follow-up care years after their diagnosis; however, many patients' follow-up lacks important components. Care is more likely to be rated as high quality when one main provider is identified and an oncology specialist is involved.
Assuntos
Neoplasias/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Inquéritos e Questionários , SobreviventesRESUMO
There has been a dramatic increase in attention to the field of palliative care and end-of-life (PCEOL) research over the past 20 years. This increase is particularly notable in the development of palliative care clinical and educational programs. However, there remain important shortcomings in the evidence base to ensure access to and delivery of effective palliative care for patients with life-limiting illness and their families. Development of this evidence base will require that we train the next generation of researchers to focus on issues in PCEOL. The purpose of this article was to explore the current status of the recruitment, training, and retention of future investigators in PCEOL research in the U.S. and propose recommendations to move us forward. Some key contextual issues for developing and supporting this research workforce are articulated, along with timely and important research areas that will need to be addressed during research training and career development. We provide targeted key recommendations to facilitate the nurturing and support of the future research workforce that is needed to ensure the development and implementation of the science necessary for providing high-quality, evidence-based palliative care to all who need and desire it.
Assuntos
Escolha da Profissão , Mobilidade Ocupacional , Pesquisa sobre Serviços de Saúde , Capacitação em Serviço/organização & administração , Cuidados Paliativos , Admissão e Escalonamento de Pessoal/organização & administração , Assistência Terminal , Estados Unidos , Recursos HumanosRESUMO
PURPOSE: Individuals diagnosed with high survival cancers will often die of cardiovascular disease (CVD) rather than a recurrence of their cancer, yet CVD risk factors may be overlooked during survivorship care. We assess the prevalence of CVD risk factors among long-term cancer survivors and compare results to survey data from the general population in the same geographic region. We also characterize how often at-risk survivors discuss CVD-related health behaviors with their health care providers. METHODS: Survivors (n = 1,582) of breast, prostate, colorectal, and gynecologic cancers, 4-14 years after diagnosis, were recruited from two California cancer registries for a cross-sectional mail survey. We assessed CVD risk factors, including smoking, body mass index, physical inactivity, hypercholesterolemia, hypertension, and diabetes, as well as report of discussions with health care providers about diet, exercise, smoking, and lifestyle change assistance. RESULTS: With the exception of current smoking, CVD risk factors were more common among survivors than the general adult population. Of survivors, 62.0 % were overweight or obese, 55.0 % reported hypertension, 20.7 % reported diabetes, 18.1 % were inactive, and 5.1 % were current smokers. Compared to white, non-Hispanic survivors, Hispanic (b = 0.37, p = 0.007) and African-American (b = 0.66, p < 0.0001), but not Asian, survivors reported significantly more risk factors. One in three survivors with one or more risk factors for CVD did not report a health promotion discussion with their health care providers. CONCLUSIONS: CVD risk factors are common among long-term survivors, but many at-risk survivors may not discuss lifestyle prevention with their health care team. Primary care and oncology should work together to deliver optimal survivorship care that addresses CVD risk factors, as well as prevalent disease. IMPLICATIONS FOR CANCER SURVIVORS: Cardiovascular disease may compromise cancer survivors' long-term health and well-being, yet cardiovascular risk factors may be overlooked during survivorship care. We document that CVD risk factors are common among cancers survivors, yet nearly a third of survivors do not report health promotion discussions with their medical teams. Survivors should be aware of their cardiovascular risk factors and initiate discussions with their medical teams about health promotion topics, if appropriate.