Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients’ understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and NCI designated comprehensive cancer centers, ranging from non-activated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the Patient-Centered Medical Home as a conceptual framework, we propose a research, policy and practice agenda that advocates for multi-faceted decision support to enhance cancer survivorship and follow-up care.
The NCI developed the print-based educational brochure, Facing Forward, to fill a gap in helping cancer patients meet the challenges of transitioning from active treatment to survivorship; however, little research has been conducted on its efficacy.
The aims of this study were to evaluate the efficacy of Facing Forward in promoting the uptake of recommended behaviors (e.g., ways to manage physical changes) and to explore its usability.
At the last treatment appointment, early-stage breast, prostate, colorectal, and thoracic cancer patients (N=340) recruited from community clinical oncology practices and an academic medical center completed a baseline assessment and were randomized to receive either Facing Forward (n=175) or an attention control booklet about the NCI’s Cancer Information Service (n=165). Patients completed follow-up assessments at 8 weeks and 6 months post-baseline.
The reported uptake of recommended stress management behaviors was greater among intervention than control participants at both 8 weeks post-baseline (p= 0.016) and 6 months post-baseline (p=0.017). At 8 weeks post-baseline, the intervention control group difference was greater among African-American than Caucasian participants (p<0.03) and significant only among the former (p< 0.003); attendance at a cancer support group was also greater among the intervention than control group participants (p< 0.02). There were no significant intervention control group differences in the reported uptake of recommended behaviors in three other categories (p>0.025). Intervention participants rated Facing Forward as understandable and helpful and indicated a high level of intention to try the behaviors recommended.
Facing Forward can enhance early-stage survivors’ reported ability to manage stress and increase support group use during the reentry period.
Implications for cancer survivors
Facing Forward can help survivors meet the challenges of the reentry period.
Survivorship; Cancer control; Psychosocial interventions; Facing Forward
Response fatigue can cause measurement error and misclassification problems in survey research. Questions asked later in a long survey are often prone to more measurement error or misclassification. The response given is a function of both the true response and participant response fatigue. We investigate the identifiability of survey order effects and their impact on estimators of treatment effects. The focus is on fatigue that affects a given answer to a question rather than fatigue that causes non-response and missing data. We consider linear, Gamma, and logistic models of response that incorporate both the true underlying response and the effect of question order. For continuous data, survey order effects have no impact on study power under a Gamma model. However, under a linear model that allows for convergence of responses to a common mean, the impact of fatigue on power will depend on how fatigue affects both the rate of mean convergence and the variance of responses. For binary data and for less than a 50% chance of a positive response, order effects cause study power to increase under a linear probability (risk difference) model, but decrease under a logistic model. The results suggest that measures designed to reduce survey order effects might have unintended consequences. We present a data example that demonstrates the problem of survey order effects.
Given the extensive utilization of the Internet for health information, web-based health promotion interventions are widely perceived as an effective communication channel. This study was conducted to determine utilization of a web-based intervention intended to improve colorectal cancer screening in a population of women who are at average risk and non-compliant to current screening recommendations. The study was a randomized controlled trial designed to compare the effectiveness of colorectal cancer screening educational materials delivered via the Internet versus a printed format. In three years, 391 women seen for routine obstetrics/gynecology follow-up at two academic centers provided relevant survey information. Of these, 130 were randomized to the web intervention. Participants received voluntary access to a password protected, study specific web site that provided information about colorectal cancer and colorectal cancer screening options. The main outcome measures were self-reported and actual website utilization. Only 24.6% of women logged onto the website. Age was the only variable that differentiated users from non-users (p = .03). In contrast, 16% of participants self-reported web use. There was significant discordance between the veracity of actual and self-reported use (p = .004). Among true users, most (81%) logged on once only. These findings raise questions about how to increase utilization of important health communication interventions.
Survivor care plans have been described as useful tools for enhancing the quality of follow-up care that cancer survivors receive after their active treatment has been completed. The relative success of current survivor care plan models is strongly dependent on the actions of individual patients. In this qualitative study of 33 cancer survivors, we explored patients’ understanding of follow-up care and their motivations and resources for seeking care. Three types of survivor experiences were identified from narratives of patients treated in community oncology and National Cancer Institute-designated comprehensive cancer centers, ranging from nonactivated patients who need enhanced health care communication and decision support to navigate their care to highly activated patients adept at navigating complex health care settings. Using the patient-centered medical home as a conceptual framework, we propose a research, policy, and practice agenda that advocates for multifaceted decision support to enhance cancer survivorship and follow-up care.
Cancer survivors; Patient-centered medical home; Qualitative research; Cancer survivorship; Cancer follow-up
This paper describes the development of a theory-guided and evidence-based multimedia training module to facilitate breast cancer survivors’ preparedness for effective communication with their health care providers after active treatment.
The iterative developmental process used included: (1) theory and evidence-based content development and vetting; (2) user testing; (3) usability testing; and (4) participant module utilization.
Formative evaluation of the training module prototype occurred through user testing (n = 12), resulting in modification of the content and layout. Usability testing (n = 10) was employed to improve module functionality. Preliminary web usage data (n = 256, mean age = 53, 94.5% White, 75% college graduate and above) showed that 59% of the participants accessed the communication module, for an average of 7 min per login.
The iterative developmental process was informative in enhancing the relevance of the communication module. Preliminary web usage results demonstrate the potential feasibility of such a program.
Our study demonstrates survivors’ openness to the use of a web-based communication skills training module and outlines a systematic iterative user and interface program development and testing process, which can serve as a prototype for others considering such an approach.
Patient–provider communication; Web-based patient education; Formative evaluation; Usability testing; Breast cancer survivorship
This study aimed to systematically identify and evaluate the readability and document complexity of currently available family history tools for the general public.
Three steps were undertaken to identify family history tools for evaluation: 1) Internet searches, 2) expert consultation, and 3) literature searches. Tools identified were assessed for readability using the Simple Measure of Gobbledygook (SMOG) readability formula. The complexity of documents (i.e., forms collecting family history information) was assessed using the PMOSE/IKIRSCH document readability formula.
A total of 78 tools were identified, 47 of which met the criteria for inclusion. SMOG reading grade levels for multimedia-based tools ranged from 10.1 to 18.3, with an average score of 13.6. For print-based tools, SMOG ranged from 8.7 to 14.1, with an average score of 12.0. Document complexity ranged from very low complexity (level 1 proficiency) to high complexity (level 4 proficiency).
The majority of tools are written at a reading grade level that is beyond the 8th grade average reading level in the United States. The lack of family history tools that are easy to read or use may compromise their potential effectiveness in identifying individuals at increased risk for chronic diseases in the general population.
family health history; genetic literacy; health literacy; readability; document complexity
This paper reviews factors associated with uptake of risk-reducing salpingo-oophorectomy by women at increased hereditary risk for ovarian cancer, as well as quality of life issues following surgery. Forty one research studies identified through PubMed and PsychInfo met inclusion criteria. Older age, having had children, a family history of ovarian cancer, a personal history of breast cancer, prophylactic mastectomy, and BRCA1/2 mutation carrier status increase the likelihood of undergoing surgery. Psychosocial variables predictive of surgery uptake include greater perceived risk of ovarian cancer and cancer-related anxiety. Most women report satisfaction with their decision to undergo surgery and both lower perceived ovarian cancer risk and less cancer-related anxiety as benefits. Hormonal deprivation is the main disadvantage reported, particularly by premenopausal women who are not on hormonal replacement therapy (HRT). The evidence is mixed regarding satisfaction with the level of information provided prior to surgery, although generally women report receiving insufficient information regarding the pros and cons of HRT. These findings indicate that when designing decision aids, demographic, medical history, and psychosocial variables need to be addressed in order to facilitate quality decision making.
ovarian risk; prophylactic oophorectomy; patient decision making; quality of life
Based on the Cognitive-Social Health Information Processing model, we identified cognitive profiles of women at risk for breast and ovarian cancer. Prior to genetic counseling, participants (N = 171) completed a study questionnaire concerning their cognitive and affective responses to to being at genetic risk. Using cluster analysis, four cognitive profiles were generated: (a) high perceived risk/low coping; (b) low value of screening/high expectancy of cancer; (c) moderate perceived risk/moderate efficacy of prevention/low informativeness of test result; and (d) high efficacy of prevention/high coping. The majority of women in clusters one, two and three were unaffected, whereas cluster four consisted almost entirely of affected women. Women in cluster one had the highest number of affected relatives and experienced higher levels of distress than women in the other three clusters. These results highlight the need to consider the psychological profile of women undergoing genetic testing when designing counseling interventions and messages.
breast and ovarian cancer risk; cluster analysis; cognitive profiles; genetic testing; psychological distress
Cancer prevention clinical trials seek to enroll individuals at increased risk for cancer. Little is known about attitudes among physicians and at-risk individuals towards cancer prevention clinical trials. We sought to characterize barriers to prevention trial participation among medical oncologists and first-degree relatives of their patients.
Physician participants were practicing oncologists in Pennsylvania. Eligible first-degree participants were adult relatives of a cancer patient being treated by one of the study physicians. The influence of perceived psychosocial and practical barriers on level of willingness to participate in cancer prevention clinical trials was investigated.
Response rate was low among physicians, 137/478(29%), and modest among eligible first-degree relatives, 82/129(64%). Lack of access to an eligible population for prevention clinical trials was the most commonly cited barrier to prevention clinical trials among oncologists. Nearly half (45%) of first-degree relatives had not heard of cancer prevention clinical trials, but 68% expressed interest in learning more, and 55% expressed willingness to participate. In the proportional odds model, greater information source seeking/responsiveness (i.e. interest in learning more about clinical prevention trials from more information sources)(p=0.04), and having fewer psychosocial barriers (p=0.02) were associated with a greater willingness to participate.
Many individuals who may be at greater risk for developing cancer because of having a first-degree relative with cancer are unaware of the availability of clinical cancer prevention trials. Nonetheless, many perceive low personal risk associated with these studies, and are interested in learning more.
Cancer; prevention; clinical trials; barriers
To describe and compare the causal beliefs and attributions about breast and colorectal cancer among unaffected women in the general population.
A total of 439 unaffected women in the general population were recruited to complete a web-based survey assessing causal beliefs for either breast (N = 211) or colorectal cancer (N = 228).
Heredity was ranked as the most important causal factor, followed by diet or eating habits for both cancer sites. Women endorsed the following causes of breast or colorectal cancer respectively: heredity (84.4%, 78.5%), diet or eating habits (46.4%, 69.7%), pollution in the environment (57.6%, 40.3%), aging (48.8%, 57.5%), alcohol (29.9%, 40.8%), smoking (58.3%, 50.8%), stress (27.5%, 29.4%), and lack of exercise (35.7%, 44.3%). Other factors such as prior surgery on the breast (23.7%) and colon (32.9%), or changes in one’s immune system (60.6% - breast; 59.2% - colon) were also endorsed by some women. Significant differences in the degree of endorsement for various causes of breast and colorectal cancer were identified.
Both genetic and environmental causes for breast and colorectal cancer are endorsed by unaffected women. Misconceptions about the causes of these cancers are important targets for public education and risk communication efforts.
breast and colorectal cancer; causal beliefs; attributions; risk factors; knowledge
Cancer survivors have cancer surveillance and preventive screening needs that require monitoring. Little is known regarding their patterns of care in community primary care practices.
Secondary analysis of 750 baseline patient surveys and medical record audits for patients ages 50+ years in 25 community-based primary care practices ( = 109 survivors and 641 noncancer patients).
Patient self-reported screening rates for breast cancer (72%), colorectal cancer (81%) and prostate cancer (77%) were higher for cancer survivors compared to noncancer patients (69%, 67%, 53%, respectively). Screening rates documented in the primary care records were lower for all cancers. Cancer survivors were more likely than others to report having been screened for colorectal cancer ( = 0.002) even after excluding colorectal cancer survivors from the analysis ( = 0.034). Male cancer survivors were more likely to report being screened for prostate cancer than those without cancer ( < 0.001), even after excluding prostate cancer survivors ( = 0.020). There were no significant differences in either self-reported or medical record report of breast cancer screening rates among cancer survivors and noncancer patients.
Cancer survivors were more likely to self-report receipt of cancer screening than noncancer patients. Medical record reports of cancer screening were lower than self-reports for cancer survivors and noncancer patients. Identifying factors that affect cancer screening among cancer survivors is important and has implications for intervention design.
chart audit; cancer screening; cancer survivors; primary care
In recent years, investigators have focused increased attention on positive psychology constructs and their associations with health outcomes, such as morbidity, mortality, and adaptation to illness. The database regarding some of these concepts and models has grown appreciably, but work in this area has been subject to controversy.
This special series of papers offers contrasting perspectives regarding research on positive psychology and health. Both proponents and critics were invited to review recent developments concerning a number of positive constructs that have been evaluated in the oncology literature and in health research, more generally.
Papers are presented in the format of a debate. Significant advances are reviewed by one set of investigators, Drs, Lisa G. Aspinwall and Richard G. Tedeschi, while shortcomings and concerns are highlighted by another set of investigators, Drs. James C. Coyne and Howard Tennen. Each of these review papers is followed by a rebuttal by the opposing side. A commentary on the exchange is provided by Dr. Sherri Sheinfeld Gorin.
These papers address a range of important considerations regarding conceptualization of constructs, methodological rigor, dissemination of findings, and implications for practice.
The critiques and recommendations offered in these papers may help inform future efforts in this area, as the field continues to evolve.
Positive psychology; Health; Cancer; Posttraumatic growth; Benefit-finding; Optimism; Sense of coherence
Email recruitment is growing in popularity; however, this convenience sampling method may yield very different results from prior convenience sampling methods. Participants in the current study were 825 undergraduate students, 446 recruited through a campus wide email and 379 recruited through Introductory Psychology courses, who completed an online survey on smoking and health. Outcomes varied significantly by group. Introductory Psychology students reported higher smoker self-concept, more pros of smoking, and were more likely to view smoking as a method of negative affect reduction. The current study suggests that recruitment method can bias our understanding of smoking behaviors among college students.
college students; smoking tobacco; survey methodology
Cancer specific primary prevention efforts for the geriatric population are not well-understood and are currently underutilized, despite the rapidly growing elderly population. Lifestyle changes such as smoking cessation, dietary change, and increasing physical activity have been shown to decrease the incidence of cancer in younger populations. However, a multitude of conceptual, methodological, and dissemination challenges arise when the goal is to apply primary prevention of cancer to the elderly. The state of the science is reviewed to reveal barriers in the uptake of cancer specific primary prevention practices, including the lack of data for the applicability of clinical research findings to older populations. Under representation of older adults in behavioral trials and research programs is hindering progress in understanding the physical health and lifestyle choices of older people. Efforts directed towards prevention in terms of promoting health behaviors may not only be clinically advantageous, but also cost-effective. Additionally, models for translating research findings on primary prevention from younger individuals to the elderly population needs to be addressed. Practitioners need to better understand opportunities for cancer specific primary prevention could enhance chronic disease management.
Primary prevention; Cancer; Behavioral research; Aging adults; Comorbidity
Cancer patient communication is always embedded in a complex background of inter-related parts, i.e., a system. Cancer patients are specifically exposed to a healthcare system. Considering this context, this article summarizes the insight from a roundtable discussion involving behavioral medicine and oncology experts convened at the 2008 Annual Meeting of the Society of Behavioral Medicine as part of an annual pre-conference course entitled “Interpersonal Communication and Cancer Control: Emerging Themes”. In this paper we summarize the communication-relevant components of healthcare systems, focusing on the macro level. Next, we review existing theoretical frameworks for systems-based communication, the unique aspects of “systems thinking,” and the emerging systems tools that can be integrated in cancer communication. Finally, we propose a research agenda for successful system approaches for patient-centered cancer communication.
Optimal patient decision making requires integration of patient values, goals, and preferences with information received from the physician. In the case of life-threatening illness such as cancer, the weights placed on quality of life (QOL) and length of life (LOL) represent critical values. The objective of this study is to describe cancer patient values regarding QOL and LOL, and explore associations with communication preferences.
Patients with advanced cancer completed a computer-based survey prior to the initial consultation with a medical oncologist. Assessments included sociodemographics, physical and mental health state, values regarding quality and length of life, communication preferences and cancer-related distress.
Seven hundred forty three advanced cancer patients were enrolled. Among 459 advanced cancer patients, fifty-five percent of patients equally valued QOL and LOL, 27% preferred QOL, and 18% preferred LOL. Patients with a QOL preference had lower levels of cancer-related distress (p < 0.001). QOL preference was associated with older age (p = 0.001), male gender (p = 0.003), and higher education (p = 0.062). Patients who preferred LOL over QOL desired a more supportive and less pessimistic communication style from their oncologists.
These data indicate that a values preference for length vs. quality of life may be simply measured, and is associated with wishes regarding the nature of oncologist communication. Awareness of these values during the clinical encounter could improve decision making by influencing the style and content of the communication between oncologists and their patients.
Quality of Life; Cancer Communication; Doctor-Patient Communication; Patient Preferences; Communication Preferences; Cancer-Related Distress; Length of Life Preferences; Patient Decision Making; Cancer Communication Aid; Patient Values
Although there is broad consensus that careful content vetting and user testing is important in the development of technology-based educational interventions, often these steps are overlooked. This paper highlights the development of a theory-guided, web-based communication aid (CONNECT™), designed to facilitate treatment decision making among patients with advanced cancer.
The communication aid included an online survey, patient skills training module and an automated physician report. Development steps included: 1) evidence-based content development, 2) usability testing, 3) pilot testing, and 4) patient utilization and satisfaction.
Usability testing identified some confusing directions and navigation for the on-line survey and validated the relevance of the “patient testimonials” in the skills module. Preliminary satisfaction from the implementation of the communication aid showed that 66% found the survey length reasonable and 70% found it helpful in talking with the physician. Seventy percent reported the skills module helpful and about half found it affected the consultation.
Designing patient education interventions for translation into practice requires the integration of health communication best practice including user feedback along the developmental process.
This developmental process can be translated to a broad array of community based patient and provider educational interventions.
usability testing; web-based education; provider patient communication; cancer treatment; health communication; intervention development; decision aids
Infection with high-risk subtypes of human papillomavirus (HPV) is a central factor in the development of cervical neoplasia. Cell-mediated immunity against HPV16 plays an important role in the resolution of HPV infection and in controlling cervical disease progression. Research suggests that stress is associated with cervical disease progression, but few studies have examined the biological mechanisms that may be driving this association.
This study examines whether stress is associated with immune response to HPV16 among women with cervical dysplasia.
Seventy-four women presenting for colposcopy completed measures of health behaviors, stressful life events and perceived stress (Perceived Stress Scale). A blood sample was obtained to evaluate proliferative T-cell response to HPV16, and a cervical sample was obtained during gynecologic exam for HPV-typing.
Over 55% tested positive for one or more HPV subtypes. Women who did not show proliferative responses to HPV (i.e. non-responders) were more likely to be HPV+ compared to women who had a response (i.e. responders). Consistent with study hypotheses, logistic regression revealed that higher levels of perceived stress were associated with a non-response to HPV16, controlling for relevant covariates. Stressful life events were not associated with T-cell response to HPV.
Higher levels of perceived stress are associated with impaired HPV-specific immune response in women with cervical dysplasia, suggesting a potential mechanism by which stress may influence cervical disease progression.
stress; human papillomavirus; cervical dysplasia; T-cell proliferative response