Barriers and Challenges of Cancer Patients and Their Experience with Patient Navigators in the Rural US/Mexico Border Region

Patient navigation is a widely used approach to minimize health disparities among socioeconomically marginalized cancer patients. Although patient navigation is widely used, there is a dearth of studies exploring patient experience with navigators among rural cancer patients. This qualitative study explores the challenges and barriers to cancer care faced by cancer patients living in a US/Mexico border region in Southern California. We individually interviewed 22 cancer patients, most of whom were Latino. Data were analyzed using constant comparison with a reiterative analysis method. The main themes relating to barriers to care and experiences with patient navigators include the following: (1) removing financial barriers, (2) coordinating services, and (3) providing therapeutic interventions. The cancer patients highly valued the navigators for their knowledge about community resources, support, and advocacy. This study suggests that it is imperative that navigators know the regional and binational health care utilization issues that impact patients’ access to cancer care.     

Provision of oncology services in remote rural areas: a Scottish perspective

There is a paucity of research into rural health care services. In particular little is known about the provision of specialist cancer services for patients who live in remote rural areas of the UK. This study set out to investigate current models of medical and clinical oncology care in Scotland. A national survey with key health professionals was conducted to identify rural oncology schemes currently in operation. Detailed quantitative data about the schemes together with qualitative data on how health professionals view current models of care were collected by a computer-assisted telephone survey. Schemes that currently provide outpatient and chemotherapy oncology services for remote rural patients fell into three categories: central clinics (5); shared care outreach clinics with chemotherapy provision (11); and shared care outreach clinics without chemotherapy provision (7). All radiotherapy was conducted at central clinics (5). Widely varying practices in delivery of cancer care were found across the country. The main issues for professionals about current models of care involved expertise, travelling and accessibility (for patients), communication and expansion of the rural service. Nation-wide consistency in cancer care has still to be achieved. Travelling for treatment was seen to take its toll on all patients but particularly for the very remote, elderly and poor. Most professionals believe that an expansion of rural services would be of benefit to these patients. It is clear, however, that the proper infrastructure needs to be in place in terms of local expertise, ensured quality of care, and good communication links with cancer centres before this could happen.     

Understanding the Patient-Provider Communication Needs and Experiences of Latina and Non-Latina White Women Following an Abnormal Mammogram

Latinas are more likely to delay recommended follow-up care than non-Latina White (NLW) women after an abnormal mammogram result. Ethnic differences in communication needs and experiences with health-care staff and providers may contribute to these delays as well as satisfaction with care. Nonetheless, little research has explored the aspects of communication that may contribute to patient comprehension, adherence to follow-up care, and satisfaction across ethnicity. The purpose of this exploratory, qualitative study was to identify patients’ communication needs and experiences with follow-up care among Latina and NLW women who received an abnormal mammogram. We conducted 41 semi-structured interviews with 19 Latina and 22 NLW women between the ages of 40 and 74 who had received an abnormal mammogram. Communication themes indicated that women’s needs and experiences concerning abnormal mammograms and follow-up care varied across ethnicity. Latinas and NLW women appeared to differ in their comprehension of abnormal results and follow-up care as a result of language barriers and health literacy. Both groups of women identified clear, empathic communication as being important in patient-provider communication; however, Latinas underscored the need for warm communicative styles, and NLW women emphasized the importance of providing more information. Women with high levels of satisfaction with patient-provider interactions appeared to have positive perspectives of subsequent screening and cancer treatment. To improve patient satisfaction and adherence to follow-up care among Latinas, educational programs are necessary to counsel health-care professionals with regard to language, health literacy, and empathic communication needs in health-care service delivery.     

Communication and the patient/physician relationship: a phenomenological inquiry

All interaction between patient and medical team is mediated through communication. In working with advanced cancer patients, troubled communication between the patient and healthcare team is sometimes evident. The current study examined the perspective of seven advanced cancer patients on this communication. The patients were under the care of an urban cancer research center, and each had expressed, at least once, a desire for hastened death. Using a phenomenological form of inquiry, serial, "in-depth semistructured" interviews were conducted (mean = 3; range = 2-6) at a place convenient to the patient. The interviews were audiotaped, transcribed, coded, and organized into themes. The study findings suggest that the most important aspects of communication between the advanced cancer patient and medical team at an urban cancer research center are the extreme vulnerability of the patient to both style and content of the communication; the extreme sensitivity of the communication itself, because it concerns issues vital to the patient; and the complexity of the communication, encompassing and expressing both verbal and non-verbal messages, as well as intended and unintended messages. Conflict inherent in almost all communication between patient and medical team involved disagreement about goals of care and the participants' perception of not being treated with respect. Harm caused to the participant by communication missteps included loss of hope, a sense of abandonment, and diminished feelings of personal dignity and worth. The findings may not be representative of advanced cancer patients being cared for in a different treatment setting.     

Binational cancer patient experiences and cancer coping in a rural US-Mexico border region

Abstract

Objective: Coping with cancer is central to patients’ cancer recovery and quality of life, yet little is known about cancer experiences and coping from the perspective of binational cancer patients. This brief report provides an exploration of experiences relating to cancer diagnosis/treatment and coping among Latino cancer patients living in the U.S.-Mexico border region

Design: We conducted secondary data analysis of qualitative data

Participants and methods: We conducted in-depth of interviews with 22 patients from a rural cancer care organization. Thematic analysis was used to analyze the data.

Findings: Three themes emerged: 1) changes in sexual functioning, 2) navigating cancer in the U.S. and between Mexican border communities, and 3) social support.

Conclusion: Rural Latino cancer patients face multiple challenges in accessing cancer treatments. Social support fills the gaps for their continuum of care.

Implication: Promoting culturally-relevant coping and resilience in clinical practice.     

Communication in palliative care: a review of recent literature

PURPOSE OF REVIEW: The quality of communication with patients, family, and team members is an extremely important element in palliative cancer care. The current paper reviews the literature on these topics as published in 2004. RECENT FINDINGS: Trust was found to be a major factor for relationship building. Information gathered by patient self-report is the method of choice, given improved insight in symptom prevalence, duration, frequency, and interference. Cultural factors in information giving, the optimal process and content, and the difficulty of conveying hope were addressed. Decision making in palliative care requires a complex integration of conceptual knowledge, ethical and legal implications, and communication skills. Aspects of manageability are explored. Although health care providers must communicate about emotions, the existential distress of cancer patients and carers often goes overlooked in the last phases of life. SUMMARY: Themes included the education of health care providers, the need to care for carers, and interdisciplinary communication. Little attention was given to the growing population of elderly patients. Observer-based studies are unfortunately scarce, making the practice of palliative communication unseen. Finally, few studies report the cost-effectiveness of palliative care interventions though such studies may enhance palliative care and convince policy makers of the need to support such care. More empirical work is needed to improve the level of quality needed to ensure a good remaining lifetime for cancer patients whose disease cannot be cured.     

Exploring Communication Difficulties in Pediatric Hematology: Oncology Nurses

Background: Communication plays an important role for the well being of patients, families and also healthcare professionals in cancer care. Conversely, ineffective communication may cause depression, increased anxiety,hopelessness and decreased of quality life for patients, families and also nurses. Objective: This study aimed toexplore communication difficulties of pediatric hematology/oncology nurses with patients and their families,as well as their suggestions about communication difficulties. Materials and Methods: It was conducted in apediatric hematology/oncology hospital in Ankara, Turkey. Qualitative data were collected by focus groups, with21 pediatric hematology/oncology nursing staff from three groups. Content analysis was used for data analysis.Results: Findings were grouped in three main categories. The first category concerned communication difficulties,assessing problems in responding to questions, ineffective communication and conflicts with the patient’s families.The second was about the effects of communication difficulties on nurses and the last main category involvedsuggestions for empowering nurses with communication difficulties, the theme being related to institutionalissues. Conclusions: Nurses experience communication difficulties with children and their families during longhospital stays. Communication difficulties particularly increase during crisis periods, like at the time of firstdiagnosis, relapse, the terminal stage or on days with special meaning such as holidays. The results obtainedindicate that pediatric nurses and the child/family need to be supported, especially during crisis periods. Feelingof empowerment in communication will improve the quality of care by reducing the feelings of exhaustion andincompetence in nurses.     

Quality of cancer care among foreign‐born and US‐born patients with lung or colorectal cancer

BACKGROUND:

Disparities in care have been documented for foreign‐born cancer patients in the United States. However, few data are available regarding patients with lung and colorectal cancer. In the current study, the authors assessed whether patient‐reported quality and receipt of recommended care differed between US‐born and foreign‐born cancer patients.

METHODS:

The authors collected surveys and medical records for a population‐based cohort including white, Hispanic, and Asian adults (2205 US‐born and 890 foreign‐born individuals) with lung or colorectal cancer diagnosed in California from 2003 through 2005. Logistic regression was used to assess the association between nativity and patient‐reported quality of care and receipt of recommended treatments (adjuvant chemotherapy for stage III colon cancer, adjuvant chemotherapy and radiotherapy for stage II/III rectal cancer, and curative surgery for stage I/II nonsmall cell lung cancer). The authors also assessed whether language explained any differences in care by nativity.

RESULTS:

Overall, 46% of patients reported excellent care, but foreign‐born patients were less likely than US‐born patients to report excellent quality of care (adjusted odds ratio [AOR], 0.80; 95% confidence interval [95% CI], 0.65‐1.00), a difference partly explained by the language of the survey, an indicator of English proficiency. Rates of recommended therapies ranged from 64% to 85%; foreign‐born patients were less likely to receive chemotherapy and radiotherapy for stage II/III rectal cancer (AOR, 0.35; 95% CI, 0.12‐0.99). Rates of other treatments did not differ significantly by nativity.

CONCLUSIONS:

Foreign‐born cancer patients reported lower quality of care and were less likely to receive some cancer therapies than patients born in the Unites States. Better coordination of care and communication regarding cancer treatments and expanded use of interpreters may lessen these disparities. Cancer 2010. © 2010 American Cancer Society.     

Oncologists’ perspectives on post‐cancer treatment communication and care coordination with primary care physicians

Post‐treatment cancer care is often fragmented and of suboptimal quality. We explored factors that may affect cancer survivors’ post‐treatment care coordination, including oncologists’ use of electronic technologies such as e‐mail and integrated electronic health records (EHRs) to communicate with primary care physicians (PCPs). We used data from a survey (357 respondents; participation rate 52.9%) conducted in 2012–2013 among medical oncologists caring for patients in a large US study of cancer care delivery and outcomes. Oncologists reported their frequency and mode of communication with PCPs, and role in providing post‐treatment care. Seventy‐five per cent said that they directly communicated with PCPs about post‐treatment status and care recommendations for all/most patients. Among those directly communicating with PCPs, 70% always/usually used written correspondence, while 36% always/usually used integrated EHRs; telephone and e‐mail were less used. Eighty per cent reported co‐managing with PCPs at least one post‐treatment general medical care need. In multivariate‐adjusted analyses, neither communication mode nor intensity were associated with co‐managing survivors’ care. Oncologists’ reliance on written correspondence to communicate with PCPs may be a barrier to care coordination. We discuss new research directions for enhancing communication and care coordination between oncologists and PCPs, and to better meet the needs of cancer survivors post‐treatment.     

Communication between physicians and cancer patients about complementary and alternative medicine: exploring patients' perspectives

The aim of this paper is to identify barriers to communication between physicians and cancer patients regarding complementary and alternative medicine (CAM) by exploring the perspectives of patients. In face of the recent popularity of CAM use among cancer patients, the lack of communication is a serious problem. A number of CAM therapies may interfere with conventional treatments and thus impact patients' well-being and chances of survival. In addition, lack of communication is problematic in the health care context because the development of openness and trust between health care providers and clients is contingent upon effective interpersonal communication. We conducted semi-structured interviews with 143 cancer patients to explore their experiences with CAM use. Using a qualitative research method, we examined interview data from 93 CAM users who provided sufficient information about communication issues. As a result, three themes emerged describing barriers to unsuccessful communication as perceived from the patient's point of view: physicians' indifference or opposition toward CAM use, physicians' emphasis on scientific evidence, and patients' anticipation of a negative response from their physician. Increasing education about CAM and regular assessment of CAM use may help physicians to be more aware of their patients' CAM use. As a result, physicians may provide patients with information on risks and benefits of CAM use and refer patients to other services that may address unmet needs. Given a difference in epistemiologic beliefs about cancer and its treatment, the challenge is to find a common ground for an open discussion in which physicians consider that scientific evidence is not all that counts in the life of an individual facing a serious disease.     

Priorities for Rural Lymphoma Survivors: A Qualitative Study

BackgroundWe gathered rural patient perspectives on lymphoma care and unmet needs throughout the treatment course to better understand their attitudes toward treatment and their barriers to participating in clinical research studies.Patients and MethodsWe conducted 12 individual semi-structured telephone interviews in the spring of 2018 with lymphoma survivors from rural counties in Georgia. Patients were identified by a residential address in counties classified as rural according to the Rural-Urban Commuting Areas codes. Participants were recruited from regional patient education conferences and from current research participants at a university research hospital in Georgia. The interviews were recorded and transcribed verbatim. Thematic analysis and MAXQDA, version 18.0.8, were used to facilitate a constant comparative coding process during theme development.ResultsThe greatest barrier to care was the travel distance. The participants described difficulty navigating between local clinics and larger cancer centers. The lack of communication between the local and specialized clinics complicated the process, and participants had difficulty contacting or seeking advice from the team at the larger cancer centers. Seeking treatment from specialized clinics farther away introduced additional barriers. Most participants agreed that the use of technology was important for improved communication. Participants described lymphoma etiology, subtype-specific studies, alternative therapies, and quality of life as key research priorities.ConclusionThese findings suggest that targeted research and interventions are necessary to address the specific needs of rural patients with and survivors of lymphoma. To address the disparity in health outcomes within rural populations, healthcare professionals and investigators can use these data to engage rural patients in treatment decision-making and research planning.     

The economic burden of lung cancer and the associated costs of treatment failure in the United States

The economic burden of lung cancer was examined with a retrospective case-control cohort study on a database containing inpatient, outpatient and drug claims for employees, dependents and retirees of multiple large US employers with wide geographic distribution. Patients were followed for maximum of 2 years from first cancer diagnosis until death, health benefits dis-enrollment or study end (31 December 2000). Compared with controls (subjects without any cancer), patients with lung cancer (n = 2040) had greater health care service utilization and costs for hospitalization, emergency room visits, outpatient office visits, radiology procedures, laboratory procedures and pharmacy-dispensed drugs (all P < 0.05). Regression-adjusted mean monthly total costs were US dollar 6520 for patients versus US dollar 339 for controls (P < 0.0001), and overall costs across the study period (from diagnosis to death or maximum of 2 years) were US dollar 45,897 for patients and US dollar 2907 for controls (P < 0.0001). The main cost drivers were hospitalization (49.0% of costs) and outpatient office visits (35.2% of costs). Monthly initial treatment phase costs (US dollar 11,496 per patient) were higher than costs during the secondary treatment phase (US dollar 3733) or terminal care phase (US dollar 9399). Failure of initial treatment was associated with markedly increased costs. Compared with patients requiring only initial treatment, patients experiencing treatment failure accrued an additional US dollar 10,370 per month in initial treatment phase costs and US dollar 8779 more per month after starting the secondary and/or terminal care phase. Over the course of the study period, these patients had total costs of US dollar 120,650, compared with US dollar 45,953 for those receiving initial treatment only. Thus, the incremental costs associated with treatment failure were US dollar 19,149 per month and US dollar 74,697 across the study period. Other types of clinical and epidemiological analysis are needed to identify risks for treatment failure. The economic burden of lung cancer on the US health care system is significant and increased prevention, new therapies or adjuvant chemotherapy may reduce both resource use and healthcare costs. New strategies for lung cancer that reduce hospitalizations and/or prevent or delay treatment failure could offset some of the economic burden associated with the disease.     

Disparities in pancreatic cancer care and research in Native Americans: Righting a history of wrongs

Disparities in pancreatic cancer incidence and outcomes exist in Native American populations. These disparities are multifactorial, difficult to quantify, and are influenced by historical, socioeconomic, and health care structural factors. The objective of this article was to assess these factors and offer a call to action to overcome them. The authors reviewed published data on pancreatic cancer in Native American populations with a focus on disparities in incidence, outcomes, and research efforts. The historical context of the interactions between Native Americans and the United States health care system was also analyzed to form actionable items to build trust and collaboration. The incidence of pancreatic cancer in Native Americans is higher than that in the general US population and has the worst survival of any major racial or ethnic group. These outcomes are influenced by a patient population with often poor access to high-quality cancer care, historical trauma potentially leading to reduced care utilization, and a lack of research focused on etiologies and comorbid conditions that contribute to these disparities. A collaborative effort between nontribal and tribal leaders and cancer centers is key to addressing disparities in pancreatic cancer outcomes and research. More population-level studies are needed to better understand the incidence, etiologies, and comorbid conditions of pancreatic cancer in Native Americans. Finally, a concerted, focused effort should be undertaken between nontribal and tribal entities to increase the access of Native Americans to high-quality care for pancreatic cancer and other lethal malignancies.     

Evaluation of a Pilot Communication Skills Training Intervention for Minority Cancer Patients

The aim of this study was to pilot test in a minority cancer patient population a communication workshop to improve doctor–patient communication skills. Thirty-two patients participated. Eighteen evaluated a face-to-face workshop, while 14 completed surveys only. Participants in the workshop group completed the Patient Report of Communication Behavior (PRCB) before and after the workshop and a course evaluation. Participants did not differ on baseline PRCB scores. Posttest scores were significantly higher than pretest scores (p < 0.01). All participants agreed or strongly agreed that they would use the communication skills; 93% agreed or strongly agreed that the skills would improve their health care.     

Value of nutrition support therapy in patients with gastrointestinal malignancies: a narrative review and health economic analysis of impact on clinical outcomes in the United States

Malnutrition, particularly under-nutrition, is highly prevalent among adult patients with a diagnosis of gastrointestinal (GI) cancer and negatively affects patient outcomes. Malnutrition is associated with clinical and surgical complications for patients undergoing therapy for GI cancers and the costs associated with those complications is a high burden for the US health system. Our objective was to identify high-quality evidence for nutrition support interventions associated with cost savings for patient care, followed by a complex economic value analysis to project cost savings for the US health system. A narrative literature search was conducted in which combined keywords in the areas of therapeutic nutrition (nutrition, malnutrition), a specific therapeutic area [GI cancer (esophageal, gastric, gallbladder, pancreatic, liver/hepatic, small and large intestine, colorectal)], and clinical outcomes and healthcare cost, to look for nutrition interventions that could significantly improve clinical outcomes. Medicare claims data were then analyzed using the findings of these identified studies and this modeling exercise supported identifying the cost and healthcare resource utilization implications of specific populations to determine the impact of nutrition support on reducing these costs as reflected in the summary of the evidence. Eight studies were found that provided clinical outcomes and health cost savings data, 2 of those had the strongest level of evidence and were used for Value Analysis calculations. Nutrition interventions such as oral diet modifications, enteral nutrition (EN) supplementation, and parenteral nutrition (PN) have been studied especially in the peri-operative setting. Specifically, peri-operative immunonutrition administration and utilization of enhanced recovery pathways after surgery have been associated with significant improvement in postoperative complications and decreased length of hospital stay (LOS). Utilizing economic modeling of Medicare claims data from GI cancer patients, potential annual cost savings of $242 million were projected by the widespread adoption of these interventions. Clinical outcomes can be improved with the use of nutrition interventions in patients with GI cancers. Healthcare costs can be reduced as a result of fewer in-hospital complications and shorter lengths of hospital stay. The application of nutrition intervention provides a positive clinical and economic value proposition to the healthcare system for patients with GI cancers     

Perceived concepts of continuity of care in people with colorectal and breast cancer--a qualitative case study analysis

We aimed to develop ideas on continuity of cancer care. In-depth qualitative interviews were conducted with 28 people. Seven had cancer. Each person with cancer nominated a close person and a primary and secondary health care professional. We examined from four perspectives: experiences of the initial diagnosis; subsequent treatment; views on continuity of care; information given about the illness; psychological/physical impact of cancer and communication with professionals, family and friends. Perceived continuity of care was influenced by the actions of patients', involvement of close contacts and engagement in shared decision making. Additionally communication between primary and secondary care, the role of various health professionals and hospital administrative systems strongly influenced continuity of care. Informational, management and relational continuity have been previously described. Our data uncovered the effect of patients' actions and the involvement of close friends and families on continuity of cancer care. People with cancer should be enabled to influence continuity of their care. Full recognition of the role of health professionals, different approaches to sharing information with patients and tightening of hospital administrative systems should also be considered.     

Increasing Routine Cancer Screening Among Underserved Populations Through Effective Communication Strategies: Application of a Health Literacy Framework

Cancer prevention and control efforts serve as national priorities, as cancer is the second leading cause of death in the USA. In addition, cancer disparities exist, with racial/ethnic minority, low-income, and uninsured populations suffering the greatest burden. The goal of this paper is to describe the role that effective health communication can play in increasing routine cancer screening among medically underserved populations, thus decreasing persistent health disparities. For this paper, we applied Sorenson’s integrated model of health literacy as a framework for identifying communication gaps and opportunities that can help improve cancer screening specifically at federally qualified health centers (FQHCs). This integrated model consists of four interrelated dimensions: access, understand, appraise, and apply. Employing communication strategies across this health literacy framework has the potential to facilitate improved decision making and cancer screening outcomes among the most underserved populations.