Increasing Cervical Cancer Screening for a Multiethnic Population of Women in South Texas

Cervical cancer is a preventable disease. Precancers can be identified and treated through cervical screenings. The HPV vaccine prevents precancers from becoming cancers. The aim of the A Su Salud Cervical Cancer Prevention Program was to apply well-understood health promotion techniques and increase the rate of cervical cancer screening among a high-risk, multiethnic, low-income population in South Texas. Qualitative research was used to identify uptake barriers and tailor media messaging. Using existing resources, we applied evidence-based strategies in novel ways that changed personal behaviors, leading to cancer screening, risk reduction, and early detection. We created a database to track a cohort of 32,807 women and measured cervical cancer screenings over 3 years. Our analysis revealed an increase in cervical cancer screenings after use of highly targeted automated telephone reminders and media dissemination on multiple platforms. Those women at low risk for cervical cancer obtained the highest proportion of Pap tests. This innovative, theory-based program increased overall Pap tests up to 9 % among women enrolled in a safety net hospital financial assistance plan. This study fills a gap in research on Pap test compliance in uninsured, mostly Hispanic women by building on cultural strengths and tailored messaging.     

The Reach and Rationale for Community Health Fairs

Latinos living in the USA account for one third of the uninsured population and face numerous cultural, linguistic, and financial barriers to accessing healthcare services. Community health fairs have developed to address the unmet need for no- and low-cost services that target prevention and education among underserved communities. The current research describes an ongoing effort in a community in Southern California and examines the barriers to health care among participants registering to receive free breast health screenings, one of the major services offered at a 2010 health fair. A total of 186 adult Latina women completed a brief questionnaire assessing their healthcare utilization and self-reported barriers to engaging in preventive and screening services. Approximately two thirds of the participants reported never receiving or having more than 2 years passing since receiving a preventive health check-up. Participants identified cost (64.5 %) and knowledge of locations for services (52.3 %) as the primary barriers to engaging in routine healthcare services. Engaging with health professionals represents a leading way in which adults obtain health information; health fairs offering cancer health screenings represent a culturally appropriate venue for increased cancer health equity. Implications of the current research for future health fairs and their role in community cancer education are discussed.     

Racial differences in knowledge, attitudes, and cancer screening practices among a triracial rural population

BACKGROUND: Low-income, minority, and rural women face a greater burden with regard to cancer-related morbidity and mortality and are usually underrepresented in cancer control research. The Robeson County Outreach, Screening and Education Project sought to increase mammography use among low-income, minority, and rural women age > 40 years. The current article reports on racial disparities and barriers to screening, especially those related to knowledge, attitudes, and behaviors. METHODS: A baseline survey was administered to 897 women age > 40 years who lived in rural Robeson County in North Carolina. The sample consisted of three principal racial groups: whites, African Americans, and Native Americans. Survey comparisons were made among racial groups with respect to knowledge, attitudes, and behaviors regarding breast and cervical carcinoma screening. RESULTS: Overall, Native American and African-American women had lower levels of knowledge, more inaccurate beliefs, and more barriers to screening compared with white women. Among the notable findings were that 43% of the patient population did not mention mammograms and 53% did not mention Pap smears as breast and cervical carcinoma screening tests, respectively; furthermore, compared with white women, significantly fewer African-American and Native American women mentioned these tests (P < 0.001). Sixty-seven percent of all women reported that a physician had never encouraged them to receive a mammogram, although 75% reported having received a regular checkup in the preceding year. CONCLUSIONS: Although all low-income rural women experienced significant barriers to receiving cancer screening tests, these barriers were more common for minority women compared with white women. More research is needed to identify ways to overcome such barriers, especially among Native American women. The results of the current study have important implications with respect to the designing of interventions aimed at improving cancer screening for all women.     

A Pilot Test of a Church-Based Intervention to Promote Multiple Cancer-Screening Behaviors among Latinas

We assessed the feasibility, acceptability, and initial impact of a church-based educational program to promote breast, cervical, and colorectal cancer screening among Latinas ages 18 years and over. We used a one-group pre-/post-evaluation within a low-income, Latino Baptist church in Boston, MA. Participants completed interviewer-administered assessments at baseline and at the end of the 6-month intervention. Under the guidance of a patient navigator (PN), women from the church (peer health advisors, or PHAs) were trained to deliver evidence-based screening interventions, including one-to-one outreach, small group education, client reminders, and reduction of structural barriers to screening. The PN and PHAs also implemented a health fair, and the pastor integrated health information into regular sermons. At pre-intervention, nearly half of the sample did not meet screening guidelines. The majority (97 %, n?=?35) of those who completed the post-intervention assessment participated in intervention activities. Two thirds (67 %) reported talking with the PN or PHAs about health issues. Participation in small group education sessions was highest (72 %), with health fairs (61 %) and goal setting (50 %) also being popular activities. Fourteen percent also reported receiving help from the PN in finding a primary care provider. This study supports the feasibility and acceptability of churches as a setting to promote cancer screening among Latinas.     

Exploring barriers to the receipt of necessary medical care among cancer survivors under age 65 years

Purpose

With increasing cancer care costs and greater patient cost-sharing in the USA, understanding access to medical care among cancer survivors is imperative. This study aims to identify financial, psychosocial, and cancer-related barriers to the receipt of medical care, tests, or treatments deemed necessary by the doctor or patient for cancer among cancer survivors age < 65 years.

Methods

We used data on 4321 cancer survivors aged 18–64 years who completed the 2012 LIVESTRONG Survey. Multivariable logistic regression was used to identify risk factors associated with the receipt of necessary medical care, including sociodemographic, financial hardship, debt amount, caregiver status, and cancer-related variables.

Results

Approximately 28% of cancer survivors were within 1 year, and 43% between 1 and 5 years, since their last treatment at the time of survey. Nearly 9% of cancer survivors reported not receiving necessary medical care. Compared to survivors without financial hardship, the likelihood of not receiving necessary medical care significantly increased as the amount of debt increased among those with financial hardship (RR_{Financial hardship w/< $10,000 debt} = 1.94, 95% CI 1.55–2.42, and RR RR_{Financial hardship w/≥ $10,000 debt} = 3.41, 95% CI 2.69–4.33, p < 0.001). Survivors who reported lack of a caregiver, being uninsured, and not receiving help understanding medical bills were significantly more likely to not receive necessary medical care.

Conclusion

We identified key financial and insurance risk factors that may serve as significant barriers to the receipt of necessary medical care among cancer survivors age < 65 in the USA

Implications for cancer survivors

The majority of cancer survivors reported receiving medical care either they or their doctors deemed necessary. However, identifying potentially modifiable barriers to receipt of necessary medical cancer care among cancer survivors age < 65 is imperative for developing interventions to ensure equitable access to care and reducing cancer disparities.

     

Young Adult Cancer Survivors’ Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care

We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18–34 recruited from a university-affiliated children’s hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14?(SD?=?3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p?=?0.003), being male (p?<?0.001), lack of insurance (p?=?0.002), and having had chemotherapy (p?=?0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.     

Cervical cancer prevention

Cervical cancer is the second most common female tumor worldwide, and its incidence is disproportionately high (>80%) in the developing world. In the United States, in which Papanicolaou (Pap) tests have reduced the annual incidence to approximately 11,000 cervical cancers, >60% of cases are reported to occur in medically underserved populations as part of a complex of diseases linked to poverty, race/ethnicity, and/or health disparities. Because carcinogenic human papillomavirus (HPV) infections cause virtually all cervical cancer, 2 new approaches for cervical cancer prevention have emerged: 1) HPV vaccination to prevent infections in younger women (aged ≤18 years) and 2) carcinogenic HPV detection in older women (aged ≥30 years). Together, HPV vaccination and testing, if used in an age‐appropriate manner, have the potential to transform cervical cancer prevention, particularly among underserved populations. Nevertheless, significant barriers of access, acceptability, and adoption to any cervical cancer prevention strategy remain. Without understanding and addressing these obstacles, these promising new tools for cervical cancer prevention may be futile. In the current study, the delivery of cervical cancer prevention strategies to these US populations that experience a high cervical cancer burden (African‐American women in South Carolina, Alabama, and Mississippi; Haitian immigrant women in Miami; Hispanic women in the US‐Mexico Border; Sioux/Native American women in the Northern Plains; white women in the Appalachia; and Vietnamese‐American women in Pennsylvania and New Jersey) is reviewed. The goal was to inform future research and outreach efforts to reduce the burden of cervical cancer in underserved populations. Cancer 2010. © 2010 American Cancer Society.     

Influence of parent characteristics and disease outcome framing on HPV vaccine acceptability among rural,Southern women

Objective A new prophylactic vaccine protects against infection with HPV types that cause many cervical cancers and genital warts. This study explored the impact of framing the vaccine’s benefits, with respect to the disease outcome being prevented, on women’s HPV vaccination intentions for themselves and for an adolescent daughter. Methods A cross-sectional study was conducted in a rural North Carolina area with a high cervical cancer mortality rate. A questionnaire was administered among female attendees of a low-income public clinic and a private OB/GYN office. Data were analyzed using a generalized estimable model. Results Women reported high intentions to vaccinate against HPV. Women reported higher intentions to vaccinate adolescent daughters than themselves, and this relationship varied by how the HPV vaccine was framed (preventing HPV, cervical cancer, or genital warts). Older women reported lower vaccination intentions than younger women. Conclusions Rural women, especially those who are younger, may be more accepting of the HPV vaccine when it is framed as a cervical cancer vaccine. Messages to mothers about the HPV vaccine for their daughters might be made more effective by framing the vaccine in terms of cancer and sexually transmitted disease prevention.     

Survivorship Care Plans: Prevalence and Barriers to Use

Survivorship care plans (SCPs) are intended to educate survivors and providers about survivors’ transition from cancer treatment to follow-up care. Using a survey of 23 cancer programs in the South Atlantic United States, we (1) describe the prevalence and barriers to SCP use and (2) assess relationships between SCP use and (a) barriers and (b) cancer program characteristics. Most cancer programs (86 %) reported some SCP use; however, less than a quarter of cancer programs’ providers had ever used an SCP. The majority (61 %) began using SCPs because of professional societies’ recommendations. Key barriers to SCP use were insufficient organizational resources (75 %) and systems for SCP use. We found patterns in SCP use across location, program type, and professional society membership. Most cancer programs have adopted SCPs, but use remains inconsistent. Efforts to promote SCP use should address barriers, particularly in cancer programs that are susceptible to barriers to SCP use.     

Mind the gap: racial differences in breast cancer incidence and biologic phenotype, but not stage, among low-income women participating in a government-funded screening program

Breast cancer mortality rates in South Carolina (SC) are 40 % higher among African-American (AA) than European-American (EA) women. Proposed reasons include race-associated variations in care and/or tumor characteristics, which may be subject to income effects. We evaluated race-associated differences in tumor biologic phenotype and stage among low-income participants in a government-funded screening program. Best Chance Network (BCN) data were linked with the SC Central Cancer Registry. Characteristics of breast cancers diagnosed in BCN participants aged 47–64 years during 1996–2006 were abstracted. Race-specific case proportions and incidence rates based on estrogen receptor (ER) status and histologic grade were estimated. Among 33,880 low-income women accessing BCN services, repeat breast cancer screening utilization was poor, especially among EAs. Proportionally, stage at diagnosis did not differ by race (607 cancers, 53 % among AAs), with about 40 % advanced stage. Compared to EAs, invasive tumors in AAs were 67 % more likely (proportions) to be of poor-prognosis phenotype (both ER-negative and high-grade); this was more a result of the 46 % lesser AA incidence (rates) of better-prognosis (ER+ lower-grade) cancer than the 32 % greater incidence of poor-prognosis disease (p values <0.01). When compared to the general SC population, racial disparities in poor-prognostic features within the BCN population were attenuated; this was due to more frequent adverse tumor features in EAs rather than improvements for AAs. Among low-income women in SC, closing the breast cancer racial and income mortality gaps will require improved early diagnosis, addressing causes of racial differences in tumor biology, and improved care for cancers of poor-prognosis biology.     

Longitudinal changes in lifestyle behaviors and health status in colon cancer survivors.

Lifestyle changes in persons diagnosed with cancer are important because they may impact prognosis, co-morbidities, and survival. This report describes longitudinal changes in lifestyle behaviors and health status among colon cancer survivors (n = 278) and population-based controls (n = 459) in North Carolina (39% African American), and examines demographic and psychosocial correlates of healthy lifestyle changes following a colon cancer diagnosis. Data are from surveys of a population-based cohort of colon cancer patients on diagnosis (the North Carolina Colon Cancer Study, NCCCS) and approximately 2 years post-diagnosis [the North Carolina Strategies to Improve Diet, Exercise, and Screening Study (NC STRIDES)], and population-based controls. Both studies collected information on demographic/lifestyle characteristics and medical history. The NCCCS reflects pre-diagnosis or pre-interview patterns, whereas NC STRIDES queried on current practices. Between the NCCCS and NC STRIDES, colon cancer survivors reported significant increases in vegetable intake, physical activity, and supplement use (all P <0.01) and a non-statistically significant increase in fruit/juice consumption (0.1 serving), with larger fruit/vegetable changes in African Americans than Whites. Controls increased physical activity and supplement use and fewer reported arthritic symptoms (P < 0.05). Survivors who were older and female had an almost 3 times higher likelihood of having used at least one new dietary supplement post-diagnosis, whereas being retired correlated with increased vegetable intake, all P < 0.05. Having more barriers to increasing fruit/vegetable intake was inversely associated with taking a new supplement (P < 0.05 only in controls). Colon cancer survivors reported making significant improvements in multiple health-related behaviors. Health care providers should communicate with persons diagnosed with colon cancer to ensure that they are making healthy lifestyle changes.     

Follow-up Care Education and Information: Identifying Cancer Survivors in Need of More Guidance

Cancer survivors engage in cancer screenings and protective health behaviors at suboptimal rates despite their increased risk for future illness. Survivorship care plans and other educational strategies to prepare cancer survivors to adopt engaged roles in managing long-term follow-up care and health risks are needed. In a sample of cancer survivors, we identified patient characteristics and psychosocial predictors associated with increased follow-up care informational needs. Cross-sectional surveys were administered to early-stage breast and prostate survivors (N?=?278; 68 % breast) at least 2 years post treatment from four community hospital programs in New Jersey between May 2012 and July 2013. Patient demographics, medical history, psychosocial characteristics (i.e., worries about the future, fear of disease recurrence, and patient activation), and perceptions of oncology and primary care were assessed. African-American survivors (AOR?=?2.69, 95 % confidence interval [CI] 1.27–5.68) and survivors with higher comorbidity (AOR?=?1.16, CI 1.01-1.33) were more likely to want additional information to guide follow-up care. Adjusting for race and comorbidities, survivors who wanted more information to guide their follow-up care reported greater worries about the future (p?<?0.05) and fears about disease recurrence (p?<?0.05) compared to those who did not want additional information. Results emphasize the need to develop cancer survivorship educational strategies that are both responsive to the needs of specific populations (e.g., African-American survivors and patients with multiple comorbidities) and the psychosocial profiles that motivate requests for more extensive follow-up guidance.     

Pap Screening Goals and Perceptions of Pain among Black, Latina, and Arab Women: Steps Toward Breaking down Psychological Barriers

Understanding women’s psychological barriers to getting Papanicolaou (Pap) screening has potential to impact cancer disparities. This study examined pain perceptions of Pap testing among black, Latina, and Arab women and goal setting to receive Pap tests. Data on 420 women, in a longitudinal study, were analyzed using Chi-square tests of differences and generalized linear mixed models. At baseline, 30.3 % of black and 35.5 % of Latina women perceived Pap tests to be very painful compared to 24.2 % of Arab women. Perceptions of pain influenced goal settings, such as scheduling a first ever Pap test (odds ratio?=?0.58, 95 % confidence interval 0.14–0.94). Immediately following the intervention, women’s perception that Pap tests are very painful significantly declined (P value <0.001) with Arab and black women registering the greatest improvements (20.3 and 17.3 % reduction, respectively, compared to 8.4 % for Latina). Having the perception that the Pap test is very painful significantly reduces the likelihood of black, Latina, and Arab women setting the goal to schedule their first ever Pap test. Latina women are the least likely to improve their perception that the Pap test is very painful, though national statistics show they have the highest rates of morbidity and mortality from cervical cancer. These findings are instructive for designing tailored interventions to break down psychological barriers to Pap screening among underserved women.     

Preventive care receipt and office visit use among breast and colorectal cancer survivors relative to age- and gender-matched cancer-free controls

Purpose

We compare breast and colorectal cancer survivors’ annual receipt of preventive care and office visits to that of age- and gender-matched cancer-free controls.

Methods

Automated data, including tumor registries, were used to identify insured individuals aged 50+ at the time of breast or colorectal cancer diagnosis between 2000 and 2008 as well as cancer-free controls receiving care from four integrated delivery systems. Those with metastatic or un-staged disease, or a prior cancer diagnosis were excluded. Annual visits to primary care, oncology, and surgery as well as receipt of mammography, colorectal cancer, Papanicolaou, bone densitometry, and cholesterol screening were observed for 5 years. We used generalized estimating equations that accounted for repeated observations over time per person to test annual service use differences by cancer survivor/cancer-free control status and whether survivor/cancer-free status associations were moderated by patient age <65 years and calendar year of diagnosis.

Results

A total of 3743 breast and 1530 colorectal cancer survivors were identified, representing 12,923 and 5103 patient-years of follow-up, respectively. Compared to cancer-free controls, breast and colorectal cancer survivors were equally or more likely to use all types of office visits and to receive cancer screenings and bone densitometry testing. Both breast and colorectal cancer survivors were less likely than cancer-free controls to receive cholesterol testing, regardless of age, year of diagnosis, or use of primary care.

Implications for Cancer Survivors

Programs targeting cancer survivors may benefit from addressing a broad range of primary preventive care needs, including recommended cardiovascular disease screening.

     

Perspectives of cancer survivors on the role of different healthcare providers in an integrated delivery system

Purpose

The purpose of this paper is to describe patient perspectives on survivorship care 1 year after cancer diagnosis.

Methods

The study was conducted at an integrated healthcare delivery system in western Washington State. Participants were patients with breast, colorectal, and lung cancer who had enrolled in a randomized control trial (RCT) of oncology nurse navigation to improve early cancer care. Those alive and enrolled in the healthcare system 1 year after diagnosis were eligible for this analysis. Participants completed surveys by phone. Questions focused on receipt of treatment summaries and care plans; discussions with different providers; patient opinions on who does and should provide their care; and patient perspectives primary care providers’ (PCP) knowledge and skills related to caring for cancer survivors

Results

Of the 251 participants in the RCT, 230 (91.6 %) responded to the 12-month phone survey and were included in this analysis; most (n?=?183, 79.6 %) had breast cancer. The majority (84.8 %) considered their cancer specialist (e.g., medical, radiation, surgical or gynecological oncologist) to be their main provider for cancer follow-up and most (69.4 %) had discussed follow-up care with that provider. Approximately half of patients were uncertain how well their PCP communicated with the oncologist and how knowledgeable s/he was in caring for cancer survivors.

Conclusions

One year after diagnosis, cancer survivors continue to view cancer specialists as their main providers and are uncertain about their PCP’s skills and knowledge in managing their care. Our findings present an opportunity to help patients understand what their PCPs can and cannot provide in the way of cancer follow-up care.

Implications for cancer survivors

Additional research on care coordination and delivery is necessary to help cancer survivors manage their care between primary care and specialty providers.     

Factors associated with long-term adherence to annual surveillance mammography among breast cancer survivors

Clinical practice guidelines recommend yearly surveillance mammography for breast cancer survivors, yet many women do not receive this service. The objective of this study was to evaluate factors related to long-term surveillance mammography adherence among breast cancer survivors. We conducted a retrospective cohort study among women ≥18 years, diagnosed with incident stage I or II breast cancer between 1990 and 2008. We used medical record and administrative health plan data to ascertain covariates and receipt of surveillance mammography for up to 10 years after completing breast cancer treatment. Surveillance included post-diagnosis screening exams among asymptomatic women. We used multivariable repeated measures generalized estimating equation regression models to estimate odds ratios and robust 95 % confidence intervals to examine factors related to the annual receipt of surveillance mammography. The analysis included 3,965 women followed for a median of six surveillance years; 79 % received surveillance mammograms in year 1 but decreased to 63 % in year 10. In multivariable analyses, women, who were <40 years or 80+ years of age (compared to 50–59 years), current smokers, had greater comorbidity, were diagnosed more recently, had stage II cancer, or were treated with mastectomy or breast conserving surgery without radiation, were less likely than other women to receive surveillance mammography. Women with outpatient visits during the year to primary care providers, oncologists, or both were more likely to undergo surveillance. In this large cohort study of women diagnosed with early-stage invasive breast cancer, we found that important subgroups of women are at high risk for non-adherence to surveillance recommendations, even among younger breast cancer survivors. Efforts should be undertaken to actively engage breast cancer survivors in managing long-term surveillance care.     

Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors

BACKGROUND.: Sources of cancer-related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs. METHODS.: The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer-related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care. RESULTS.: Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long-term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01). CONCLUSIONS.: Opportunities exist to improve the quality, content and delivery of cancer-related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. (c) 2008 American Cancer Society.     

Cancer Survivors’ Reported Discussions with Health Care Providers About Follow-Up Care and Receipt of Written Care Plans

Prior studies reveal gaps in cancer survivors’ discussions with health care providers about follow-up care and receipt of care plans; however, whether survivorship care planning may vary by cancer type is not known. We surveyed 615 survivors of breast, colorectal, prostate, lung cancer, and melanoma enrolled in three health plans to examine cancer survivors’ self-reported discussions of follow-up care, including the need for surveillance, late and long-term effects, emotional needs, and health behaviors. We assessed whether cancer survivors received a written treatment summary and post-treatment care instructions. Most (92%) survivors reported having a discussion about the need for surveillance; 75%, late and long-term effects; 69%, lifestyle and health behaviors; and 53%, emotional and social needs. Most (88%) reported receiving post-treatment care instructions and 47%, a treatment summary. While there was little difference among survivors’ receipt of surveillance or health behavior recommendations by cancer type (p = 0.85 and p = 0.66, respectively), discussions of late and long-term effects occurred among 82% of prostate, 78% of breast, 73% of melanoma, 72% of colorectal, and 67% of lung survivors (p = 0.06). Approximately half of survivors reported discussions of emotional needs, with modest differences by cancer type (p = 0.08). Our findings indicate that most patient-provider discussions cover information on surveillance, with less emphasis on late and long-term effects, lifestyle and health behaviors, and substantially less focusing on emotional and social needs. No or modest differences in discussions occurred by cancer type. Whether tailoring information to individual cancer survivor needs is beneficial should be examined.     

Receipt of cancer treatment summaries and follow-up instructions among adult cancer survivors: results from a national survey

Purpose

The purpose of this study is to examine reporting of treatment summaries and follow-up instructions among cancer survivors.

Methods

Using the 2010 National Health Interview Survey, we created logistic regression models among cancer survivors not in treatment (n?=?1,345) to determine characteristics associated with reporting treatment summaries and written follow-up instructions, adjusting for sociodemographic, access, and cancer-related factors. Findings are presented for all survivors and those recently diagnosed (≤4 years). We also examined unadjusted associations between written instructions and subsequent surveillance and screening.

Results

Among those recently diagnosed, 38 % reported receiving treatment summaries and 58 % reported written instructions. Among all survivors, approximately one third reported summaries and 44 % reported written instructions. After adjustment, lower reporting of summaries was associated with cancer site, race, and number of treatment modalities among those recently diagnosed, and white vs. black or Hispanic race/ethnicity, breast vs. colorectal cancer, >10 vs. ≤5 years since diagnosis, no clinical trials participation, and better than fair health among all survivors. For instructions, lower reporting was associated with no trials participation and lower income among those recently diagnosed, and increasing age, white vs. black race, lower income, >10 vs. ≤5 years since diagnosis, 1 vs. ≥2 treatment modalities, no trials participation, and at least good vs. fair/poor health among all survivors. Written instructions were associated with reporting provider recommendations for breast and cervical cancer surveillance, and recent screening mammograms.

Conclusion

Many recently diagnosed cancer survivors did not report receiving treatment summaries and written follow-up instructions. Opportunities exist to examine associations between use of these documents and recommended care and outcomes, and to facilitate their adoption.

Implications for cancer survivors

Cancer survivors who have completed therapy should ask their providers for treatment summaries and written follow-up instructions, and discuss with them how their cancer and therapy impact their future health care.