Qualitative Study of Health Information -Seeking Barriers among Mastectomy Patients

Background: Health information-seeking behavior (HISB) plays a key role in self-care management, promoting quality of life and improving health. However, some individual and contextual barriers hinder women undergoing mastectomy access to needed information. Identifying and removing health information-seeking barriers for these women undergoing mastectomy can lead to improving their health outcomes. Therefore, the aim of this study was to identify the health information-seeking barriers for women with breast cancer after mastectomy. Materials and Methods: This was a conventional qualitative content analysis in which the participants were selected through purposive sampling based on the study inclusion criteria from two hospitals of Shahid Mohammadi and Persian Gulf and Chemotherapy Center of Omid in Bandar Abbas. The study population consisted of 17 women with breast cancer after mastectomy. Data were collected through semi-structured face-to-face interviews. Results: Seven main themes were introduced as three individual barriers, including fear, shame and embarrassment and inadequate health literacy and four contextual barriers of economic status, physicians and medical staff, lack of accessibility of information sources and the behavior of those around them that were the underlying factors to explain the barriers of health information seeking in mastectomized women. Conclusion: The results of this study emphasize the need for further attention from Iranian authorities to health care, especially women’ health care institutions, to reform the health system and remove their health information -seeking barriers.     

Multiple Stakeholder Perspectives on Cancer Stigma in North India

Background: Cancer is a leading cause of death worldwide. A large proportion of cancer deaths are preventablethrough early detection but there are a range of social, emotional, cultural and financial dimensions that hinderthe effectiveness of cancer prevention and treatment efforts. Cancer stigma is one such barrier and is increasinglyrecognized as an important factor influencing health awareness and promotion, and hence, disease prevention andcontrol. The impact and extent of stigma on the cancer early detection and care continuum is poorly understoodin India. Objectives: To evaluate cancer awareness and stigma from multiple stakeholder perspectives in NorthIndia, including men and women from the general population, health care professionals and educators, andcancer survivors. Materials and Methods: A qualitative study was conducted with in-depth interviews (IDIs)and focus group discussions (FGDs) among 39 individuals over a period of 3 months in 2014. Three groups ofparticipants were chosen purposively - 1) men and women who attended cancer screening camps held by theIndian Cancer Society, Delhi; 2) health care providers and 3) cancer survivors. Results: Most participants wereunaware of what cancers are in general, their causes and ways of prevention. Attitudes of families towardscancer patients were observed to be positive and caring. Nevertheless, stigma and its impact emerged as a crosscutting theme across all groups. Cost of treatment, lack of awarenes and beliefs in alternate medicines wereidentified as some of the major barriers to seeking care. Conclusions: This study suggests a need for spreadingawareness, knowledge about cancers and assessing associated impact among the people. Also Future research isrecommended to help eradicate stigma from the society and reduce cancer-related stigma in the Indian context.     

Sexual Dysfunction in Females after Cancer Treatment: an Unresolved Issue

Cancer besides being a leading cause of mortality also creates a myriad of morbidities in survivors whether treated or untreated. Among women surviving after gynecological malignancies sexual dysfunction is a morbidity unexplored in Indian context because of cultural barriers. With the increasing proportion of women surviving carcinoma of the cervix, quality of life has become an important clinical issue. Despite the immense distress it causes in patients, sexual dysfunction is neither screened nor treated in Indian scenario. Despite this recognition, the area is not well researched and there is a paucity of information on the impact of cancer treatment on sexual health in Indian Context. Research has shown that up to 50% of women treated for cervix cancers have sexual dysfunction as they recover and become cancer survivors. This article aims to review the phases of sexual response and how each may be affected by the physical and emotional stress of cancer diagnosis and treatment. We will then discuss existing tools for assessment of sexual function and approaches to their treatment. Finally, we will conclude with advice to health care professionals based on current research and suggest questions for future study.     

Health profiles in 5836 long-term cancer survivors

Increasingly, prolonged survival follows the diagnosis of cancer. Cancer therapies result in complex and lasting health effects that create unique health-care needs for the survivors but are poorly understood (especially in survivors of adult cancers). Cancer survivors were asked to respond to a mailed health survey and provide medical and social information pertaining to their cancer experience. Information about demographics and perceived disease-related medical problems was analyzed. We analyzed the response of 5,836 survivors of adult cancers. Two-thirds of the responses came from women, and the response rate was 51% in both sexes. The mean interval since cancer diagnosis was 18.0 +/- 8.5 years. Younger survivors and men were more likely to report that cancer had affected their health. The health effect most commonly reported by survivors was arthritis/osteoporosis (26% of respondents). Survivors of Hodgkin's disease prominently reported thyroid and lung problems (33.8% of responders with the diagnosis). Prior diagnosis of lymphoma was associated with frequent mention of memory loss (14.7%). The passage of time decreased some perceived effects (memory loss) but increased others (arthritis/osteoporosis, cataracts). Compared with the general population, the incidence of several age- and gender-adjusted health conditions in cancer survivors is different. This group of cancer survivors reported generally good health but outlined multiple lasting medical problems. The health survey described represents 1 approach to the development of comprehensive information about the health needs of cancer survivors.     

Cancer Control and the Communication Innovation in South Korea: Implications for Cancer Disparities

Over the last 10 years, the number of cancer survivors in South Korea has reached nearly one million with asurvival rate of 49.4%. However, integrated supportive care for cancer survivors is lagging. One area in which thecurrent cancer control policy needs updating is in the utilization of information and communication technology(ICT). The remarkable progress in the field of ICT over the past 10 years presents exciting new opportunitiesfor health promotion. Recent communication innovations are conducive to the exchange of meta-information,giving rise to a new service area and transforming patients into active medical consumers. Consequently, suchinnovations encourage active participation in the mutual utilization and sharing of high-quality information.However, these benefits from new ICTs will almost certainly not be equally available to all, leading to so-calledcommunication inequalities where cancer survivors from lower socioeconomic classes will likely have morelimited access to the best means of making use of the health information. Therefore, most essentially, emphasismust be placed on helping cancer survivors and their caregivers utilize such advances in ICT to create a moreefficient flow of health information, thereby reducing communication inequalities and expanding social support.Once we enhance access to health information and better manage the quality of information, as a matter of fact,we can expect an alleviation of the health inequalities faced by cancer survivors.     

Health care for childhood cancer survivors: insights and perspectives from a Delphi panel of young adult survivors of childhood cancer.

BACKGROUND: Most children diagnosed with cancer are surviving into adulthood but are not receiving adequate or appropriate follow-up health care. However, to the authors' knowledge, there is little literature published to date exploring potential barriers to long-term risk-based follow-up care for young adult survivors of childhood cancer. METHODS: In the current study, using a modified Delphi technique, young adult cancer survivors identified barriers to utilizing appropriate follow-up care and offered suggestions for ways to enhance health care in this young adult population. RESULTS: Major barriers to health care were found to be a lack of knowledge on the part of both physicians and survivors regarding long-term health issues related to cancer. Suggestions to enhance care included self-advocacy training for survivors and advanced training for primary care physicians who may treat childhood cancer survivors as they transition into adulthood. CONCLUSIONS: The results of the current study are consistent with reports that young adult survivors of childhood cancer need or desire information regarding their medical histories, psychosocial support, and social advocacy.     

Potential Spillover Educational Effects of Cancer-Related Direct-to-Consumer Advertising on Cancer Patients’ Increased Information Seeking Behaviors: Results from a Cohort Study

Spillover effects of exposure to direct-to-consumer advertising (DTCA) of cancer treatments on patients’ general inquiry about their treatments and managing their illness are not well understood. This study examines the effects of cancer patients’ exposure to cancer-related DTCA on subsequent health information seeking behaviors from clinician and non-clinician sources (lay media and interpersonal contacts). Using a longitudinal survey design over 3 years, data was collected from cancer survivors diagnosed with colorectal, breast, or prostate cancer who were randomly sampled from the Pennsylvania Cancer Registry. Study outcome measures include patients’ information engagement with their clinicians and information seeking from non-medical sources about cancer treatment and quality of life issues, measured in the second survey. The predictor variable is the frequency of exposure to cancer-related DTCA since diagnosis, measured at the round 1 survey. The analyses utilized lagged-weighted multivariate regressions and adjusted for round 1 levels of patient–clinician engagement, information seeking from nonmedical sources, and confounders. Exposure to cancer-related DTCA is associated with increased levels of subsequent patient–clinician information engagement (B?=?.023, 95 % CI?=?.005–.040, p?=?.012), controlling for confounders. In comparison, exposure to DTCA is marginally significant in predicting health information seeking from non-clinician sources (B?=?.009, 95 % CI?=??.001–.018, p?=?.067). Cancer-related DTCA has potentially beneficial spillover effects on health information seeking behaviors among cancer patients. Exposure to DTCA predicts (a little) more patient engagement with their physicians.     

Limitations in health care access and utilization among long‐term survivors of adolescent and young adult cancer

BACKGROUND:

Health care outcomes for long‐term survivors of adolescent and young adult (AYA) cancer were compared with young adults without a cancer history, using the 2009 Behavioral Risk Factor Surveillance System data.

METHODS:

Eligible participants were 20 to 39 years of age. There were N = 979 who self‐reported a cancer diagnosis between the ages of 15 to 34 years and were at least 5 years from diagnosis (excluding nonmelanoma skin cancer). The remaining 67,216 participants with no cancer history were used as controls. Using multivariable regressions, relative risks and 95% confidence intervals were generated to examine the relationship of survivor status on indicators of poor health care (uninsured, no personal health care provider, no routine care, and avoiding seeing a doctor due to cost). Adjusted proportions were calculated by demographic groups. Results are weighted by Behavioral Risk Factor Surveillance System survey design.

RESULTS:

Although the proportion uninsured did not differ (21% of survivors vs 23% of controls), AYA survivors reported forgoing care due to cost at higher levels than controls (relative risk = 1.67, 95% CI = 1.44‐1.94). Cost barriers were particularly high for survivors aged 20 to 29 years (44% vs 16% of controls; P < .001) and female survivors (35% vs 18% of controls; P < .001). Survivors reporting poorer health had more cost barriers. Moreover, uninsured survivors tended to report lower use of health care than did controls.

CONCLUSIONS:

AYA cancer survivors may forgo health care due to cost barriers, potentially inhibiting the early detection of late effects. Expanding health insurance coverage for young cancer survivors may be insufficient without adequate strategies to reduce their medical cost burdens. Cancer 2012. © 2012 American Cancer Society.     

Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: the Childhood Cancer Survivor Study (CCSS)

BACKGROUND:

Lack of health insurance is a key barrier to accessing care for chronic conditions and cancer screening. The influence of insurance type (private, public, none) on survivor‐focused and general preventive health care in adult survivors of childhood cancer was examined.

METHODS:

The Childhood Cancer Survivor Study is a retrospective cohort study of childhood cancer survivors diagnosed between 1970 and 1986. Among 8425 adult survivors, the relative risk (RR) and 95% confidence interval (CI) of receiving survivor‐focused and general preventive health care were estimated for uninsured (n = 1390) and publicly insured (n = 640), compared with for the privately insured (n = 6395)

RESULTS:

Uninsured survivors were less likely than those privately insured to report a cancer‐related visit (adjusted RR, 0.83; 95% CI, 0.75‐0.91) or a cancer center visit (adjusted RR, 0.83; 95% CI, 0.71‐0.98). Uninsured survivors had lower levels of utilization in all measures of care in comparison with privately insured. In contrast, publicly insured survivors were more likely to report a cancer‐related visit (adjusted RR, 1.22; 95% CI, 1.11‐1.35) or a cancer center visit (adjusted RR, 1.41; 95% CI, 1.18‐1.70) than were privately insured survivors. Although publicly insured survivors had similar utilization of general health examinations, they were less likely to report a Papanicolaou test or a dental examinations

CONCLUSIONS:

Among this large, socioeconomically diverse cohort, publicly insured survivors utilize survivor‐focused health care at rates at least as high as survivors with private insurance. Uninsured survivors have lower utilization of both survivor‐focused and general preventive health care. Cancer 2011. © 2010 American Cancer Society.     

Primary Care Physician Perspectives on Caring for Adult Survivors of Hematologic Malignancies and Hematopoietic Cell Transplantation

BackgroundPrimary care physicians (PCPs) may face barriers to caring for hematologic malignancy and hematopoietic cell transplantation (HCT) survivors.MethodsA Web-based survey consisting of 40 questions and 2 case scenarios was administered to 302 PCPs at 2 large integrated health care systems. The questionnaire assessed perceived barriers to delivery of care to hematologic malignancy/HCT survivors, resources available to care for cancer survivors, practices for care coordination with hematologist-oncologists, and preferred models of care delivery.ResultsOverall response rate was 30% (n = 86). PCPs reported several barriers such as lack of resources to facilitate care (69%), lack of awareness of screening/prevention guidelines (55%) and psychosocial needs of survivors (65%), inadequate time (65%), and patient preference to follow up with their oncologists (66%). They expressed confidence in caring for general medical issues (84%) and general cancer screening (73%), but they preferred that oncologists manage cancer-related medical issues (42%) as well as screen for cancer recurrence (52%) and secondary cancers (55%). In multivariable analysis, PCPs who had previously cared for a large number of hematologic malignancy/HCT survivors and those with a longer time since graduation from medical school had greater confidence in managing cancer-related medical issues.ConclusionPCPs report several barriers in providing care to hematologic malignancy/HCT survivors. Clinical experience with this patient population is associated with greater confidence in providing survivorship care. Several barriers identified by PCPs in providing survivorship care to hematologic malignancy/HCT survivors are potentially addressable by education and clinical decision support tools and guidelines, thereby enhancing the patients’ clinical experience and care coordination with hematologist-oncologists.     

The Psychosocial Oncology Learning Assessment: A Province-Wide Survey of Cancer Care Providers’ Learning Needs

A psychosocial oncology learning needs assessment was developed and offered online to cancer care providers in a variety of settings across all health regions in British Columbia. The purpose was to better understand the psychosocial learning needs of cancer care providers and to use this knowledge to shape continuing education priorities. Respondents' preferred learning formats, access to technology and barriers to accessing psychosocial learning opportunities were also assessed. Cancer care providers including radiation therapists, social workers, dieticians, pharmacists, physicians and nurses in both community and agency settings were surveyed. Two hundred and sixty-seven people completed the survey. Key learning needs identified included cultural aspects of care, symptom management, treating the anxious patient, self-care for the professional, care of elderly patients, basic cancer-related medical issues surrounding care and ethics. Community respondents indicated more needs than agency respondents. On-site training was the most preferred learning format, and time constraints were the biggest barrier to accessing learning opportunities. Participants had access to technology. Next steps include conducting key informant and focus group interviews to determine if interest in a learning need is the same as a relevant knowledge and practice gap. This research suggests that cancer care providers are interested in learning more about the psychosocial issues related to cancer care.     

Breast cancer survivors' health-related quality of life : racial differences and comparisons with noncancer controls

BACKGROUND.

Small samples with few minority women and/or the absence of comparisons to peers without cancer histories have limited previous research suggesting racial differences in breast cancer survivors' health‐related quality of life (HRQoL). This study not only compared HRQoL of African American and white breast cancer survivors, but also compared the HRQoL of these women to that of same‐race women with no cancer history.

METHODS.

Data from the Women's Health Initiative‐Observational Study were used, including 5021 cancer survivors and 88,532 women without a history of cancer. Multivariate regression analyses estimated differences in breast cancer survivors' baseline HRQoL (RAND36), depressive symptoms (CES‐D short‐form), and sleep quality (WHIIRS).

RESULTS.

African American breast cancer survivors reported worse physical functioning and general health compared with white survivors. Among African Americans, survivors reported worse role limitations due to physical health, pain, general health, and vitality than women without a history of cancer. This was most evident in those with more recent diagnoses. Most significant differences between groups were small in magnitude (Cohen d = .21‐.36).

CONCLUSIONS.

These results add to the increasing knowledge of cancer disparities by showing that African American women have small, but clinically meaningful, decrements in physical HRQoL compared with white survivors and with African American women without cancer. Because African American women also face diagnosis with higher grade tumors and higher breast cancer mortality, more research is needed to examine the physical and psychosocial experiences of African American breast cancer survivors to elucidate the mechanisms leading to poorer outcomes. Cancer 2008. © 2008 American Cancer Society.     

Health Management of Breast Cancer Survivors

Breast cancer is defined as a chronic disease.Increasing amounts of attention have been paid to the health management of breast cancer survivors. An important issue is how to find the most appropriate method of follow-up in order to detect long-term complications of treatment, local recurrence and distant metastasis and to administer appropriate treatment to the survivors with recurrence in a timely fashion. Different oncology organizations have published guidelines for following up breast cancer survivors. However, there are few articles on this issue in China. Using the published follow-up guidelines,we analyzed their main limitations and discussed the content,follow-up interval and economic benefits of following up breast cancer survivors in an effort to provide suggestions to physicians.Based on a large number of clinical trials, we discussed the role of physical examination, mammography, liver echograph, chest radiography, bone scan and so on. We evaluated the effects of the above factors on detection of distant disease, survival time,improvement in quality of life and time to diagnosis of recurrence.The results of follow-up carried out by oncologists and primary health care physicians were compared. We also analyzed the correlation factors for the cost of such follow-up. It appears that follow-up for breast cancer survivors can be carried out effectively by trained primary health care physicians. If anything unusual arises, the patients should be transferred to specialists.     

Prevalence of Cancer Visits by Physician Specialty, 1997–2006

Understanding the prevalence of cancer-related visits by physician specialty may help target educational and quality improvement initiatives. Using the 1997–2006 National Ambulatory Medical Care Survey, adult ambulatory visits (N = 161,278) were classified by cancer diagnosis and patients’ characteristics and compared with physician specialty. The prevalence of cancer visits within each specialty varied from 0% to 62%. Aside from hematology/oncology (hem/onc) specialties, nine surgical specialties and four medical specialties had more than 1% cancer visits. Cancer patients with private insurance or Medicaid coverage were less likely to see hem/onc specialists compared to Medicare patients. Whereas hem/onc specialists primarily see cancer patients, general surgeons and primary care physicians provide a large amount of cancer services, particularly to underinsured patients. Thus, when trying to contact cancer patients or their physicians, health administrators, researchers, and practitioners should consider targeting general surgeons and primary care physicians in addition to hem/onc specialists.     

Inequalities and Barriers to the Use of Supportive Care Among Young Breast Cancer Survivors: a Qualitative Understanding

The development of supportive care for cancer patients has been shown to have a positive impact on both mortality rates and many aspects of life after cancer, particularly in young women. Meanwhile, there are still numerous inequalities in terms of cancer mortalities and quality of life among cancer survivors in France. The processes leading to unequal access to supportive care services, and the impact this has on the post-treatment period, have been poorly documented, however. The goal of this study was to understand the barriers to using supportive care services among young women breast cancer survivors under the age of 50 and to find out how this can contribute to inequalities. Thirty-six young breast cancer survivors, one third of which deemed socially deprived, were interviewed using a qualitative, inductive approach at two comprehensive care centres in France. Our findings primarily show that there are still a number of barriers to accessing supportive care for a large number of patients. The way information about supportive services is delivered is a major cause of inequalities in the use of these services. The guidance provided does not take into account either the patients’ needs or their capacity to integrate the information and anticipate problems. Certain specific post-treatment issues have yet to be addressed. Some systemic barriers could be lifted by changing the way information on supportive care services is currently organised and thereby prevent the survivorship plans now being implemented in cancer care settings from reinforcing health inequalities.     

Cancer Survivors’ Use of Numerous Information Sources for Cancer-Related Information: Does More Matter?

A large proportion of the 14 million cancer survivors in the USA are actively seeking health information. This study builds on the informed- and shared-decision making literature, examining cancer survivors’ health information seeking behaviors to (1) quantify the number of health information sources used; (2) create a demographic profile of patients who report seeking cancer information from numerous sources versus fewer sources in five areas: cancer information overall, disease/treatment, self-care/management, health services, and work/finances; and (3) examine whether seeking cancer information from numerous sources is associated with self-efficacy, fear of recurrence, perceptions of information seeking difficulty, and resultant patient–provider communication. Data came from a survey of post-treatment cancer survivors (N?=?501) who responded to a mailed questionnaire about health information seeking. Participants were divided into two groups using a median split: those who sought health information from more than five sources (numerous source seekers) and those that sought information from less than five sources (fewer source seekers). Multivariable logistic regression was used to model differential information seeking behaviors and outcomes for numerous versus fewer source seekers. On average, survivors sought cancer-related information from five different sources. Numerous source seekers were more likely to be women, have higher levels of education, and report fewer problems with cancer information-seeking. Overall, numerous source seekers were no more or less likely to discuss information with their providers or bring conflicting information to their providers. Understanding the characteristics, behaviors, and experiences of survivors who seek cancer-related information from numerous sources can contribute to informed decision making and patient-centered care.     

Experiences of Cervical Cancer Survivors in Rural Eastern North Carolina: a Qualitative Assessment

Little qualitative research has been conducted with cervical cancer survivors. We sought to understand the experiences of survivors in rural Eastern North Carolina and identify any barriers which may have kept women from receiving preventive Papanicolaou screenings or follow-up care. We conducted semi-structured in-depth interviews with 15 low-income and underserved cervical cancer survivors living in Eastern North Carolina. Participants included English-speaking women who attended a large cancer center for care between March 2012 and March 2013. Participants ranged from being recently diagnosed with cervical cancer to being 15 years post-diagnosis. Interviews lasted approximately 1 h and were audio-tape-recorded. On average, women were 55 years old (range 35–85) and were diagnosed with cervical cancer 3 years prior to the interview (range 0.2 to 180 months). A good proportion was uninsured or Medicaid-insured (60 %). Half reported an annual household income of less than $20,000, and 13 % reported having a college degree. The majority of survivors had limited understanding of cervical cancer, experienced persistent symptoms related to their cancer before seeking care, and were nonadherent to Papanicolaou screening recommendations. The main barriers to care reported by participants was lack of money and health insurance, followed by the perception of overall health (which equated to the belief that medical care was not needed), transportation issues, and discomfort with provider. Health professionals should focus educational efforts on the benefits of Papanicolaou screenings, the symptoms sometimes associated with cervical cancer, and the free or low-cost services available to low-income women.     

Health Disparities in Unmet Support Needs of Women with Gynecologic Cancer: An Exploratory Study

International research suggests that many women with gynecological cancers have unmet supportive care needs that often correlate with greater psychological distress and poorer quality of life. The United States has a diverse population and evolving health care system, so this study aims to identify the support needs of women with gynecologic cancer in this geographic region. Furthermore, there are numerous health disparities with regards to cancer care; therefore, a second aim of this study is to explore health disparities in unmet support needs. Fifty-one women with gynecologic cancers completed an adapted version of the Supportive Care Needs Survey. Sociodemographic and cancer-related information were also collected. Findings revealed a high frequency of unmet support needs, particularly in the psychological, physical, and practical domains. Additionally, disparities in levels of support needs were found to be dependent on income and minority status. Specifically, unmet needs in the physical/daily living and practical domains were dependent on income, and minorities reported significantly higher support needs in the sexuality and psychological need domains than their majority counterparts. These results highlight the potential benefits of enhanced multidisciplinary services to better assess and address patients’ needs. Nonetheless even with enhanced services, the findings, consistent with other health disparities research, suggest lower income affects access to care, so more research is needed on how to overcome these barriers.     

Career Outcomes of Graduates of R25E Short-Term Cancer Research Training Programs

The efficacy of short-term cancer research educational programs in meeting its immediate goals and long-term cancer research career objectives has not been well studied. The purpose of this report is to describe the immediate impact on, and the long-term career outcomes of, 499 medical students and graduate students who completed the Cancer Research Experiences for Students (CaRES) program at the University of Alabama at Birmingham (UAB) from 1999 to 2013. In summer 2014, all 499 program alumni were located and 96.4 % (481 of 499) agreed to complete a longitudinal tracking survey. About 23 % of CaRES alumni (110 of 499) have published at least one cancer-related paper. Overall 238 cancer-related papers have been published by CaRES alumni, one third of this number being first-authored publications. Nearly 15 % (71 of 481 respondents) reported that their current professional activities include cancer research, primarily clinical research and outcomes research. Of these 71 individuals, 27 (38 %) have completed their training and 44 (62 %) remain in training. Of all respondents, 58 % reported that they administered care to cancer patients and 30 % reported other cancer-related professional responsibilities such as working with a health department or community group on cancer control activities. Of the 410 respondents not currently engaged in cancer research, 118 (29 %) stated intentions to conduct cancer research in the next few years. Nearly all respondents (99.6 %) recommended CaRES to today’s students. Challenging short-term educational cancer research programs for medical students and graduate health professional students can help them refine and solidify their career plans, with many program alumni choosing cancer research careers.