Setting the stage for universal financial distress screening in routine cancer care

Financial burden from cancer treatment is increasingly being recognized as a threat to optimal access, quality, and outcomes of cancer care for patients. Although research in the area is moving at a fast pace, multiple questions remain unanswered, such as how to practically integrate the assessment and management of financial burden into routine health care delivery for patients with cancer. Although psychological distress screening for patients undergoing cancer treatment now is commonplace, the authors raise the provocative idea of universal screening for financial distress to identify and assist vulnerable groups of patients. Herein, the authors outline the arguments to support screening for financial burden in addition to psychological distress, examining it as an independent patient‐reported outcome for all patients with cancer at various time points during their treatment. The authors describe the proximal and downstream impact of such a strategy and reflect on some challenges and potential solutions to help integrate this concept into routine cancer care delivery. Cancer 2017;123:4092–4096. © 2017 American Cancer Society.     

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.     

Treatment challenges and support needs of underserved Hispanic patients diagnosed with lung cancer and head-and-neck cancer

Abstract

Purpose: We explored the treatment challenges and support needs that Hispanic underserved lung cancer and head-and-neck cancer patients face while undergoing cancer treatment.

Design: Qualitative design - ethnography.

Sample: Using a sample of 29 participants, we conducted semi-structured interviews with nine lung cancer and head-and-neck cancer survivors and seven health care providers and focus group interviews with six caregivers and seven patient navigators.

Method: Relevant themes were extracted with Ethnographic content analysis.

Findings: Participants reported treatment challenges and support needs in four areas: medical, financial, socio-cultural, and mental health. Health care providers and navigators primarily identified medical and financial challenges that impact treatment adherence, while patients and caregivers expressed the need for support for mental health problems (i.e., depression, anxiety).

Implications for psychosocial providers: Understanding the experiences of underserved Hispanic cancer survivors can aid in creating psychosocial interventions that successfully target treatment-related challenges and provide them with the support they need.     

Experiences of Family Caregivers of Cancer Patients Receiving Chemotherapy

Background: Cancer is a disease which affects not only patients but also their families physically and emotionally. The purpose of this study was to determine the needs, challenges and ways of coping of caregivers of cancer patients. Materials and Methods: In the study, a phenomenological approach was used. Data were collected through semi-structured individual interviews. The study sample comprised 16 family members providing care for a cancer patient. Results: The study findings are grouped under four main themes: the impact of caregiving, masking feelings, experienced challenges and expectations, and coping. During the caregiving process, patient relatives are affected physiologically, psychologically and socially. It was determined that patient relatives hid their feelings and avoided talking about the disease for fear that they might upset the patient, and that they had difficulty in coping with the patient’s reactions during the treatment process. Family members had difficulties arising from the health system, hospital conditions and treatment in addition to ransportation and financial problems. Support is very important in coping, but it was determined that some of the relatives of patients did not receive adequate support. Patient relatives expect that health care professionals should provide them with more information about their patient’s condition and the course of the disease that their patients should be dealt with by the physicians specialized in cancer, and that psychological support should be provided both for them and for their patient. Conclusions: During the caregiving process, family members are faced with many difficulties and they exhibit different coping behaviors which health care professionals should take into account.     

“You’re too young for this”: Adolescent and Young Adults’ Perspectives on Cancer Survivorship

Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.     

"You're too young for this": adolescent and young adults' perspectives on cancer survivorship

Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.     

Cancer information and support needs of statutory and voluntary sector staff working with people from ethnically diverse communities

Cancer is difficult for people from ethnically diverse communities to cope with, because there is inequality in getting information and services to meet their needs for prevention, prompt diagnosis, treatment, care and support. Research with black minority ethnic (BME) communities indicates a lack of knowledge about cancer, and a desire for more information, yet research is highly equivocal with regard to health and social care workers' ability to provide this. The study described in this article aimed to identify the educational and support needs of health and social care workers from statutory and voluntary sectors, working with people affected by cancer in one London borough. Qualitative research methods of one-to-one interview and focus group discussion were used among 33 staff working in various community, organizational and professional settings. Two focus groups were held with cancer patients and carers to gain complementary understanding of their needs for support and information. Health and social care workers are challenged when providing cancer information and support to people from BME communities, even when the worker is of the same cultural background as the person affected by cancer. Interviewees considered that in most respects, the challenges for improving cancer care for people from BME communities are those common for all, and that the difficulty in providing and sustaining improved cancer information and support services to BME communities in their borough lies in poverty, low literacy and social exclusion as much as cultural difference.     

Context for understanding psychosocial outcomes and behavior among adolescents and young adults with cancer

Across all age groups, cancer affects relationships with family and friends; challenges one's sense of independence; disrupts goals, aspirations, and achievements; alters one's body image and integrity; and poses existential challenges about the world and one's place in it. When diagnosed with cancer, adolescents and young adults (AYAs) in their 20s and 30s face unique challenges compared with younger children and older adults. Understanding how cancer-related challenges manifest needs and desires for psychological and social support services throughout a continuum of care may help clinicians improve cost-effective quality care and patient outcomes. This article provides a context for understanding the experiences of AYAs with cancer and highlights key domains of psychosocial need in this population.     

Financial and social impact of supporting a haematological cancer survivor

Support persons of haematological cancer survivors may be faced with unique challenges due to the course of these diseases and the treatments required. This study aimed to examine the social and financial impacts associated with their role. Eight hundred adult survivors of haematological cancer within 3 years of diagnosis were invited via an Australian state population-based cancer registry to complete a survey. Survivors were mailed two questionnaire packages, one for themselves and one for their primary support person. Non-respondents were mailed reminders via the survivor after 3 weeks. One hundred and eighty-two support persons completed the questionnaire (85% response rate). Of these, 67 (46%) support persons reported having at least one personal expense and 91 (52%) experienced at least one financial impact. Male support persons and support persons of survivors in active treatment reported experiencing more personal expenses than other support persons. Older participants reported fewer financial consequences. A greater number of social impacts were reported by those born outside Australia, those who had to relocate for treatment and support persons of survivors in active treatment. Future research should focus on practical solutions to reducing these impacts on support persons.     

Can trained volunteers provide psychosocial support to patients undergoing radiotherapy? The perspective of patients and volunteers

PurposeClinic-based psychosocial interventions, including volunteer-based ones, may be a cost-efficient and acceptable means of integrating psychosocial support into cancer care during radiotherapy. The present study evaluated a new psychosocial volunteer support program in a large radiotherapy clinic.Methods and MaterialsPatients were asked to complete a demographic and satisfaction with care questionnaire. Clinic volunteers were asked to report their interactions with patients on shift logs.ResultsOf the 182 participating patients, 93 (51%) recalled meeting a volunteer in the clinic, with the 2 most common support types provided being the following: “listening and caring,” and “information on services.” Analysis of 224 volunteers' shift logs indicated that almost all interactions (94%) were initiated by the volunteers, and almost half (47%) involved the patients' companions in the clinic. The most common support type documented was “information and navigation” (71%), followed by “emotional” (47%), “diversional” (21%), and “physical/practical” (17%) support.ConclusionsTrained volunteers can effectively provide clinic-based psychosocial support and information to a high proportion of radiotherapy patients. These findings demonstrate that volunteer support is a feasible means of meeting the psychosocial needs of patients with cancer attending outpatient radiotherapy clinics, who may not require or want professional psychosocial support.     

Exploring long-term cancer survivors’ experiences in the career and financial domains: Interviews with hematopoietic stem cell transplantation recipients

Abstract

Using semi-structured interviews with 50 hematopoietic stem cell transplantation (HSCT) recipients who were 2 to 22 years post-transplant, this study investigates cancer survivors’ interpretations of their economic and work-related experiences during and after treatment. Survivors described a variety of challenges in these areas, including job insecurity, discrimination, career derailment, the lack of career direction, delayed goals, financial losses, insurance difficulties, constraints on job mobility, and physical/mental limitations. Survivors described the ways these challenges were offset by external factors that helped them to navigate these difficulties and buffered the negative financial and career-related impacts. Good health insurance, favorable job characteristics, job accommodations, and financial buffers were prominent offsetting factors. Most survivors, however, were also forced to rely on individual behavioral and interpretative strategies to cope with challenges. Behavioral strategies included purposeful job moves, retraining, striving harder, and retiring. Some strategies were potentially problematic, such as acquiring large debt. Interpretive strategies included reprioritizing and value shifts, downplaying the magnitude of cancer impact on one's life, denying the causal role of cancer in negative events, making favorable social comparisons, and benefit finding. Post-treatment counseling and support services may assist survivors in identifying available resources and useful strategies to improve long-term adaptation in the career and financial realms.     

The role of community-based and philanthropic organizations in meeting cancer patient and caregiver needs

We examined information from community-based and philanthropic organizations to document the cancer-related services that are currently available, establish which services are still needed, and determine who utilizes these formal support networks. In Phase I, 32 of 41 eligible organizations participated in a survey conducted from December 1999 to March 2000. The most common mission focus among participating organizations was information/referral-centered. The most common services provided were referrals to information resources and provision of cancer-related information. Only two of the organizations in Phase I provided client demographic information and both indicated that client populations were predominantly white, female, and over age 40. Phase II of the study involved analyzing patient data from Cancer Care, Inc., a national service organizations for cancer patients. Between 1983 and 1997, there were 2,714 prostate cancer patients and 9,451 breast cancer patients included in the Cancer Care database. Their most commonly reported problems were related to personal adjustment to illness, financial, home care, and transportation needs. There were significant differences in problems reported depending upon age and disease status. In addition, the results of this study support the idea that those at highest risk for developing and dying of cancer are the least likely to utilize formal support networks. Further, a gap in service provision for assistance with practical needs (e.g., transportation, home care, child care, psychosocial support) was identified. Due to the increasing use of outpatient care for cancer patients, a greater demand for practical assistance can be expected in the future. The availability of practical services will need to be increased in order to effectively meet cancer patient needs.     

Caring for patients with oral cancer in Taiwan: The challenges faced by family caregivers

Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers’ primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face‐to‐face, semi‐structured and tape‐recorded interviews to collect data and employed qualitative content analysis to elicit caregiving‐related themes. Six task‐related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers’ ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.     

Cancer and Employment Issues: Perspectives from Cancer Patient Navigators

Among individuals diagnosed with cancer, 40 % are working-age adults who will face numerous challenges in returning to work, yet oncology providers report limited guidance and uncoordinated communication processes in addressing patients’ work-related issues. Cancer patient navigators are uniquely positioned to fill this care and communication gap due to their focus on both practical matters and clinical care. This cross-sectional study utilized survey methodology to collect quantitative and qualitative data from 58 cancer patient navigators to (1) identify patients’ cancer and employment issues that commonly challenge navigators and (2) identify the necessary training navigators felt would allow them to more effectively help patients deal with cancer and employment issues. Participants from the southeast USA were invited to complete a paper survey while in attendance at a statewide cancer patient navigator conference or online via the state comprehensive cancer coalition’s cancer patient navigator listserv. Results suggest financial burdens, work and treatment conflicts, taking unpaid leave for cancer care, and working through treatment were common concerns among their patients. Navigators also identified employment, legal, government programs, and financial resources as important training and education topics that would help them address their clients’ employment and cancer conflicts. Given the fact that employment issues remain one of the most common unmet need of survivors and the increasing presence of navigators across the USA, it is important to address the role of navigators in meeting patients’ needs regarding cancer and employment and ensure they are provide with adequate training and resources.     

Cancer Registration in the Peoples Republic of China

The current situation of cancer registration in China was systematically reviewed. So far, cancer registrationin China has been making a great progress in the following aspects: the number of cancer registries and coveredpopulation have increased dramatically; a registration network has been established and completed gradually;regulations and rules improved remarkably; more attention is being paid by every level of government; a lotof registration software has been created and financial support ensured. However, we are still facing someproblems and challenges, such as no stable groups of registrars, shortage of training opportunities, poor dataquality, insufficient utilization and lack of multidisciplinary mechanisms, so that the cancer registration systemstill needs to be enhanced and improved. Along with the development of economy, science and informationtechnology, methods and patterns of cancer registration is changing. It is to be expected that cancer registrationwill be automatic, nationwide and integrated with community healthcare in the near future.     

The greatest challenges reported by long-term colorectal cancer survivors with stomas

This paper presents a qualitative analysis of the greatest challenges reported by long-term colorectal cancer survivors with ostomies. Surveys that included an open-ended question about challenges of living with an ostomy were administered at three Kaiser Permanente regions: Northern California, Northwest, and Hawaii. The study was coordinated at the Southern Arizona Veterans Affairs Health Care System in Tucson. The City of Hope Quality of Life Model for Ostomy Patients provided a framework for the study's design, measures, data collection, and data analysis. The study's findings may be generalized broadly to community settings across the United States. Results replicate those of previous research among veterans, California members of the United Ostomy Association, Koreans with ostomies, and colorectal cancer survivors with ostomies residing in the United Kingdom. The greatest challenges reported by 178 colorectal cancer survivors with ostomies confirmed the Institute of Medicine's findings that survivorship is a distinct, chronic phase of cancer care and that cancer's effects are broad and pervasive. The challenges reported by study participants should inform the design, testing and integration of targeted education, early interventions, and ongoing support services for colorectal cancer patients with ostomies.