Search

Purpose We explored adolescent and young adult cancer survivor (AYA) experiences with COVID-19 to understand the impact of living through a pandemic, unmet needs, and coping strategies. Methods AYAs were recruited nationally, completed an online survey, and attended one of six online focus groups. We used qualitative content analysis to analyze focus group data. Results Thirty-nine AYAs completed the survey, and 24 also participated in the focus groups. In the survey, AYAs responded that COVID-19 increased anxiety about their health or their family’s health, feelings of isolation, and worries about job security. Overarching focus group themes included AYA behavioral responses to the pandemic similar to their peers, the added burden of cancer, and unexpected advantages of a cancer history. When discussing the added burden of cancer, subthemes included difficulties and delays in medical care, mental health stressors, and compounding uncertainty. Unexpected advantages of a cancer history included relying on coping strategies developed during active treatment and resiliency from practicing social distancing during treatment. Conclusions AYAs have struggled in the early pandemic in ways similar to their peers but with compounding uncertainty regarding their unknown risk due to cancer history. Healthcare providers and systems can better support AYAs by providing additional psychosocial supports, developing strategies to triage good candidates for telehealth, and providing information about cancer survivor-specific risks for COVID-19. Implications for Cancer Survivors Our findings indicate a need for psychosocial supports that address managing anxiety and uncertainty. AYAs may be able to draw on their cancer experiences to navigate the COVID-19 pandemic. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-021-01069-9.

Purpose: To explore financial incentives as an intervention to improve colorectal cancer screening (CRCS) adherence among traditionally disadvantaged patients who have never been screened or are overdue for screening. Approach: We used qualitative methods to describe patients’ attitudes toward the offer of incentives, plans for future screening, and additional barriers and facilitators to CRCS. Setting: Kaiser Permanente Washington (KPWA). Participants: KPWA patients who were due or overdue for CRCS. Method: We conducted semi-structured qualitative interviews with 37 patients who were randomized to 1 of 2 incentives (guaranteed $10 or a lottery for $50) to complete CRCS. Interview transcripts were analyzed using a qualitative content approach. Results: Patients generally had positive attitudes toward both types of incentives, however, half did not recall the incentive offer at the time of the interview. Among those who recalled the offer, 95% were screened compared to only 25% among those who did not remember the offer. Most screeners stated that staying healthy was their primary motivator for screening, but many suggested that the incentive helped them prioritize and complete screening. Conclusions: Incentives to complete CRCS may help motivate patients who would like to screen but have previously procrastinated. Future studies should ensure that the incentive offer is noticeable and shorten the deadline for completion of FIT screening.

Purpose: Hispanics residing in rural areas are among those who are least likely to be screened for colorectal cancer (CRC) and more likely to present with late stage CRC than other racial or ethnic groups. We conducted a pilot study utilizing a mixed-method approach to explore perceptions of CRC and CRC screening among Hispanic adults residing in South Texas rural communities and to identify health literacy needs associated with CRC screening uptake. Methods: A convenience sample of 58 participants, aged 35–65, were recruited to complete questionnaires and participate in focus groups, ranging in size from 4 to 13 participants. Six focus groups were conducted across 3 adjacent rural counties. A semi-structured moderator’s guide was designed to elicit discussion about participants’ experiences, knowledge, and perceptions of CRC and CRC screening. Findings: Lack of knowledge of CRC and CRC screening as cancer prevention was a common theme across focus groups. A majority, 59%, reported never been screened. Thirty-nine percent reported they had been screened for colon cancer and 5% reported they did not know if they had been screened. Participants with lower educational levels perceived themselves at high risk for developing CRC polyps, would not want to know if they had CRC, and if they did have CRC, would not want to know until the very end. Limited information about CRC and CRC screening, a lack of specialized providers, limited transportation assistance, and compromised personal privacy in small-town medical facilities were perceived to be barriers to CRC screening. Conclusions: Low screening rates persist among rural Hispanics. Improving CRC screening literacy and addressing factors unique to rural Hispanics may be a beneficial strategy for reducing screening disparities in this at-risk population.

OBJECTIVE: This study aimed to provide a better understanding of the medical decision-making preferences and experiences of young adult survivors of pediatric, adolescent, and young adult cancers. METHODS: We conducted key informant interviews and a cross-sectional mailed survey with young adult survivors (currently aged 18–39 years) of pediatric, adolescent and young adult cancers in South Texas. RESULTS: Of the responding survivors, almost all wanted to be actively involved in medical decision-making, but preferences regarding family and doctor involvement varied. In open-ended responses, the most commonly reported concerns related to medical decision-making were feelings of uncertainty and fear of receiving bad news. Survivors reported that they desired more information in order to feel better about medical decision-making. CONCLUSIONS: Due to the variety of preferences regarding decision-making and who to include in the process, physicians should be prepared to ask and accommodate patients regarding their decision-making preferences.

PURPOSE: Our study aims to determine whether receipt of a written survivorship care plan (SCP) is associated with five self-reported health behaviors known to be correlated with positive long-term outcomes for cancer survivors: 1) attending a recent medical appointment, 2) exercise in the past month, 3) non-smoking status, 4) mammography in the past two years, and 5) up-to-date colorectal cancer screening. METHODS: In this secondary data analysis, we used data from the 2014 Behavioral Risk Factor Surveillance System (BRFSS) cancer survivorship module for 1,855 off-treatment cancer survivors. Multivariable logistic regression accounting for complex survey design was used to examine the association between SCP receipt and each of the five preventive health behaviors. RESULTS: Overall, 37% (669/1,855) of survivors reported receiving a written survivorship care plan. In the logistic regression models adjusted for sociodemographic and disease-related factors, SCP receipt was associated with having a recent medical appointment (OR (95% CI): 2.81 (1.27–6.22)), exercise in the past month (1.78 (1.20–2.63)), non-smoking status (2.27 (1.26–4.12)), and up-to-date mammography (2.25 (1.30–3.88)). Receipt of a survivorship care plan was not associated with colorectal cancer screening (1.2 (0.73–2.03)). CONCLUSIONS: This study provides preliminary evidence that SCPs may be helpful in promoting health behaviors among cancer survivors, including attending a regular medical appointment, mammography screening, exercise, and abstinence from smoking. Additionally, the low rates of SCP provision highlights an important missed opportunity and area for intervention. IMPLICATIONS FOR CANCER SURVIVORS: Providing survivors with SCPs may help to increase important health behaviors.

Background. Despite its widespread advocacy, shared decision making (SDM) is not routinely used for cancer screening. To better understand the implementation barriers, we describe primary care physicians’ (PCPs’) support for SDM across diverse cancer screening contexts. Methods. Surveys were mailed to a random sample of USA-based PCPs. Using multivariable logistic regression analyses, we tested for associations of PCPs’ support of SDM with the US Preventive Service Task Force (USPSTF) assigned recommendation grade, assessed whether the decision pertained to not screening older patients, and the PCPs’ autonomous v. controlled motivation-orientation for using SDM. Results. PCPs (n = 278) were, on average, aged 52 years, 38% female, and 69% white. Of these, 79% endorsed discussing screening benefits as very important to SDM; 64% for discussing risks; and 31% for agreeing with patient’s opinion. PCPs were most likely to rate SDM as very important for colorectal cancer screening in adults aged 50–75 years (69%), and least likely for colorectal cancer screening in adults aged >85 years (34%). Regression results indicated the importance of PCPs’ having autonomous or self-determined reasons for engaging in SDM (e.g., believing in the benefits of SDM) (OR = 2.29, 95% CI, 1.87 to 2.79). PCPs’ support for SDM varied by USPSTF recommendation grade (overall contrast, X2 = 14.7; P = 0.0054), with support greatest for A-Grade recommendations. Support for SDM was lower in contexts where decisions pertained to not screening older patients (OR = 0.45, 95% CI, 0.35 to 0.56). Limitations. It is unknown whether PCPs’ perceptions of the importance of SDM behaviors differs with specific screening decisions or the potential limited ability to generalize findings. Conclusions. Our results highlight the need to document SDM benefits and consider the specific contextual challenges, such as the level of uncertainty or whether evidence supports recommending/not recommending screening, when implementing SDM across an array of cancer screening contexts.

We sought to (1) assess prevalence of fear of recurrence among cancer survivors diagnosed as adolescent and young adults (AYA; 15–39 years) versus those diagnosed at a later age (40+ years) and (2) identify factors associated with fear of recurrence in each group. We used logistic regression to determine the correlates of fear of recurrence by age group at diagnosis among survivors responding to the 2010 LIVESTRONG survey. Prevalence of fear of recurrence was significantly higher among AYA survivors (85.2 %) than those diagnosed at an older age (79.7 %). Among AYA respondents, being employed and less than 5 years off treatment were positively associated with fear of recurrence while those with thyroid cancer and those who participated in a clinical trial were less likely to experience fear of recurrence. Among older adults, receipt of surgery was associated with fear of recurrence whereas having insurance coverage through Medicare or Medicaid and positive patient-provider communication were negatively associated with fear of recurrence. For both AYA and older adult survivors, changeable factors such as having a more positive cancer care experience may impact fear of recurrence. Our findings highlight the need to identify and understand aspects of the communication process that can be targeted in future interventions with survivors and healthcare providers to ensure that fear of recurrence is being appropriately managed. Factors associated with fear of recurrence differ for AYA and older adult survivors; thus, interventions would likely benefit from tailoring based on age at diagnosis.

PURPOSE: Cancer survivors with multiple chronic conditions experience significant challenges managing their health. The six core functions of patient-centered communication (PCC)—fostering healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions, and enabling patient self-management—represent a central component to facilitating a survivor’s confidence to manage their health that has not been investigated in cancer survivors with multiple chronic conditions. METHOD: Nationally representative data across two iterations of the Health Information National Trends Survey (HINTS) were merged with combined replicate weights using the jackknife replication method. Adjusted linear regression examined the association between PCC and health self-efficacy in a sample of breast, colorectal, and prostate cancer survivors and by multiple chronic conditions. RESULTS: 53.9% reported that providers did not always respond to their emotions and 48.9% reported that they could not always rely on their providers to help them manage uncertainty. In the adjusted linear regression models, there was a significant positive association between PCC and health self-efficacy (β = 0.2, p = 0.01) for the entire sample. However, the association between PCC and health self-efficacy was attenuated in cancer survivors with multiple chronic conditions (β = 0.1, p = 0.53). CONCLUSION: PCC alone is not enough to improve a cancer survivor’s confidence in their ability to manage their health in the presence of multiple chronic conditions. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors with multiple chronic conditions need ongoing support, in addition to PCC, that render them prepared to manage their health after cancer.

Priorities for young adult survivorship care from the survivors’ perspective are not well documented. To address this within our patient population, we conducted a multi-method needs assessment of young adult survivors of pediatric, adolescent, and young adult cancer in South Texas to get a better understanding of the ongoing challenges and priorities for their survivorship needs and related services. Participants were 18 to 39 years at the time of the needs assessment and predominately Hispanic. In an online survey, survivors most commonly cited being concerned about their physical and mental health, long-term treatment effects, recurrence, and health insurance issues. Participants stated that they received critical support from family, friends, and medical staff, but they would like to receive additional support from other cancer survivors through peer mentorship opportunities and survivor retreats/social events.

The use of physician office-based tools such as electronic health records (EHRs), health risk appraisal (HRA) instruments, and written patient reminder lists is encouraged to support efficient, high-quality, patient-centered care. We evaluate the association of exam room use of EHRs, HRA instruments, and self-generated written patient reminder lists with patient-physician communication behaviors, recommended preventive health service delivery, and visit length.Observational study of 485 office visits with 64 primary care physicians practicing in a health system serving the Detroit metropolitan area. Study data were obtained from patient surveys, direct observation, office visit audio-recordings, and automated health system records. Outcome measures included visit length in minutes, patient use of active communication behaviors, physician use of supportive talk and partnership-building communication behaviors, and percentage of delivered guideline-recommended preventive health services for which patients are eligible and due. Simultaneous linear regression models were used to evaluate associations between tool use and outcomes. Adjusted models controlled for patient characteristics, physician characteristics, characteristics of the relationship between the patient and physician, and characteristics of the environment in which the visit took place.Prior to adjusting for other factors, visits in which the EHR was used on average were significantly (p .05) longer (27.6 vs. 23.8 minutes) and contained fewer preventive services for which patients were eligible and due (56.5 percent vs. 62.7 percent) compared to those without EHR use. Patient written reminder lists were also significantly associated with longer visits (30.0 vs. 26.5 minutes), and less use of physician communication behaviors facilitating patient involvement (2.1 vs. 2.6 occurrences), but more use of active patient communication behaviors (4.4 vs. 2.6). Likewise, HRA use was significantly associated with increased preventive services delivery (62.1 percent vs. 57.0 percent). All relationships remained significant (p .05) in adjusted models with the exception of that between HRA use and preventive service delivery.Office-based tools intended to facilitate the implementation of desired primary care practice redesign are associated with both positive and negative cost and quality outcomes. Findings highlight the need for monitoring both intended and unintended consequences of office-based tools commonly used in primary care practice redesign.

To examine whether survivorship care planning (receipt of written treatment summary or instructions for follow-up care) is associated with unmet needs among adolescent and young adult (AYA) cancer survivors (aged 15-39 at diagnosis).We used data from the 2010 LIVESTRONG Survey for People Affected by Cancer. Outcome variables were survivor reports of unmet needs, including information on late effects of cancer treatment, fertility issues, cancer recurrence, and family cancer risk. We used multivariable logistic regression models to determine whether receipt of either a treatment summary or follow-up care instructions was associated with each unmet needs after controlling for sociodemographic and cancer history factors.Of the AYA respondents (N = 1395), only 30% reported receipt of a written treatment summary and 86% received instructions for follow-up care. The most commonly reported unmet need was addressing recurrence concerns (80%), followed by information on late effects (78%), family risk of cancer (51%), and fertility information (45%). In multivariable analyses, receipt of a written treatment summary was associated with lower odds of having unmet needs about late effects information (odds ratio; OR = 0.51 [0.37-0.71]) and recurrence concerns (OR = 0.55 [0.39-0.79]). Receipt of follow-up care instructions was associated with lower odds of unmet needs about late effects information (OR = 0.29 [0.15-0.58]) and fertility information (OR = 0.62 [0.42-0.91]).Survivorship care planning including written treatment summaries and follow-up care instructions may help reduce unmet information and service needs of AYA survivors. This study provides further evidence for the importance of survivorship care planning as a way to improve survivor outcomes.

Long-term adherence to colorectal cancer (CRC) screening is particularly important for fecal testing. Some U.S. studies report that only 25% of individuals repeat fecal testing annually. The purpose of this qualitative study was to identify barriers and facilitators reported by patients with suboptimal screening adherence to refine interventions for starting ongoing adherence to CRC screening. We also explored whether participants, particularly never screeners, would be willing to do a CRC screening blood test. Forty-one patients who previously enrolled in the Systems of Support to Increase CRC Screening (SOS) trial were interviewed 4–5 years later. Participants were purposively selected to include men and women with diverse race/ethnicities who had either been inconsistent screeners or had never screened during the first three years of SOS despite receiving at least two rounds of mailed fecal tests. Two interviewers conducted 30-min telephone interviews using a semi-structured interview guide. An iterative thematic analysis approach was used. Themes related to screening barriers were more pervasive among never screeners including: (1) Avoidance (inattention, procrastination) (2) Concerns about handling stool; (3) Health concerns; (4) Fear of a cancer diagnosis or positive test results. Themes related to screening facilitators were more often mentioned by participants who screened at least once including: (1) Use of a simpler 1-sample fecal test; (2) Convenience of mailings and doing the test at home; (3) Salience of prevention, especially as one got older; and (4) Influence of recommendations from providers, family and friends. Participants had diverse preferences for the number (3 on average) and types (phone, mail, text) of screening reminders. Some participants did not prefer e-mail links to the patient shared electronic health record because of difficulties remembering their password. It was acceptable for a nurse or medical assistant not from their clinic to call them as long as that person was knowledgeable about their records and could communicate with their physician. Participants, especially never screeners, were generally very enthusiastic about the potential option of a CRC screening blood test. Future CRC screening programs should be designed to minimize these barriers and maximize facilitators to improve long-term screening adherence. Primary Funding Agency: The National Cancer Institute of the National Institutes of Health (R01CA121125). Registered at clinicaltrials.gov NCT00697047 .

Objective Self-persuasion is an effective behavior change strategy, but has not been translated for low-income, less educated, uninsured populations attending safety-net clinics or to promote human papillomavirus (HPV) vaccination. We developed a tablet-based application (in English and Spanish) to elicit parental self-persuasion for adolescent HPV vaccination and evaluated its feasibility in a safety-net population. Methods Parents (N = 45) of age-eligible adolescents used the self-persuasion application. Then, during cognitive interviews, staff gathered quantitative and qualitative feedback on the self-persuasion tasks including parental decision stage. Results The self-persuasion tasks were rated as easy to complete and helpful. We identified six question prompts rated as uniformly helpful, not difficult to answer, and generated non-redundant responses from participants. Among the 33 parents with unvaccinated adolescents, 27 (81.8%) reported deciding to get their adolescent vaccinated after completing the self-persuasion tasks. Conclusions The self-persuasion application was feasible and resulted in a change in parents’ decision stage. Future studies can now test the efficacy of the tablet-based application on HPV vaccination. Practice implications The self-persuasion application facilitates verbalization of reasons for HPV vaccination in low literacy, safety-net settings. This self-administered application has the potential to be more easily incorporated into clinical practice than other patient education approaches.

Objective Although provider recommendation is a key predictor of HPV vaccination, how providers verbalize recommendations particularly strong ones is unknown. We developed a tool to describe strength and content of provider recommendations. Methods We used electronic health records to identify unvaccinated adolescents with appointments at six safety-net clinics in Dallas, Texas. Clinic visit audio-recordings were qualitatively analyzed to identify provider recommendation types (presumptive vs. participatory introduction; strong vs. weak), describe content communicated, and explore patterns between recommendation type and vaccination. Results We analyzed 43 audio-recorded discussions between parents and 12 providers. Most providers used a participatory introduction (42 discussions) and made weak recommendations (24 discussions) by using passive voice or adding a qualification (e.g., not school required). Few providers (11 discussions) gave strong recommendations (clear, personally-owned endorsement). HPV vaccination was lowest for those receiving only weak recommendations and highest when providers coupled the recommendation with an adjacent rationale. Conclusion Our new tool provides initial evidence of how providers undercut their recommendations through qualifications or support them with a rationale. Most providers gave weak HPV vaccine recommendations and used a participatory introduction. Practice implications Providers would benefit from communication skills training on how to make explicit recommendations with an evidence-based rationale.

Little is known about validity of self-reported mammography surveillance among breast cancer survivors. Most studies have focused on accuracy among healthy, average-risk populations and none have assessed validity by electronic medical record (EMR) extraction method. To assess validity of survivor-reported mammography post-active treatment care, we surveyed all survivors diagnosed 2004-2009 in an academic hospital cancer registry (n = 1441). We used electronic query and manual review to extract EMR data. Concordance, sensitivity, specificity, positive predictive value, and report-to-records ratio were calculated by comparing survivors' self-reports to data from each extraction method. We also assessed average difference in months between mammography dates by source and correlates of concordance. Agreement between the two EMR extraction methods was high (concordance 0.90; kappa 0.70), with electronic query identifying more mammograms. Sensitivity was excellent (0.99) regardless of extraction method; concordance and positive predictive value were good; however, specificity was poor (manual review 0.20, electronic query 0.31). Report-to-records ratios were both over 1 suggesting over-reporting. We observed slight forward telescoping for survivors reporting mammograms 7-12 months prior to survey date. Higher educational attainment and less time since mammogram receipt were associated with greater concordance. Accuracy of survivors' self-reported mammograms was generally high with slight forward telescoping among those recalling their mammograms between 7 and 12 months prior to the survey date. Results are encouraging for clinicians and practitioners relying on survivor reports for surveillance care delivery and as a screening tool for inclusion in interventions promoting adherence to surveillance guidelines.

Background. Despite widespread advocacy for shared decision making (SDM), the empirical evidence regarding its effectiveness to improve patient outcomes has not been systematically reviewed. The purpose of this study was to systematically review the empirical evidence linking patient outcomes and SDM, when the decision-making process has been explicitly measured, and to identify under what measurement perspectives SDM is associated with which types of patient outcomes (affective-cognitive, behavioral, and health). Data Sources. PubMed (through December 2012) and hand search of article bibliographies. Study Selection. Studies were included if they empirically 1) measured SDM in the context of a patient-clinician interaction and 2) evaluated the relationship between SDM and at least 1 patient outcome. Data Extraction. Study results were categorized by SDM measurement perspective (patient-reported, clinician-reported, or observer-rated) and outcome type (affective-cognitive, behavioral, or health). Data Synthesis. Thirty-nine studies met inclusion criteria. Thirty-three used patient-reported measures of SDM, 6 used observer-rated measures, and 2 used clinician-reported measures. Ninety-seven unique patient outcomes were assessed; 51% affective-cognitive, 28% behavioral, and 21% health. Only 43% of assessments ( n = 42) found a significant and positive relationship between SDM and the patient outcome. This proportion varied by SDM measurement perspective and outcome category. It was found that 52% of outcomes assessed with patient-reported SDM were significant and positive, compared with 21% with observer-rated and 0% with clinician-reported SDM. Regardless of measurement perspective, SDM was most likely to be associated with affective-cognitive patient outcomes (54%), compared with 37% of behavioral and 25% of health outcomes. Limitations. The relatively small number of studies precludes meta-analysis. Because the study inclusion and exclusion criteria required both an empirical measure of SDM and an assessment of the association between that measure and a patient outcome, most included studies were observational in design. Conclusions. SDM, when perceived by patients as occurring, tends to result in improved affective-cognitive outcomes. Evidence is lacking for the association between empirical measures of SDM and patient behavioral and health outcomes.

Objective This study aims to develop a conceptual model of patient-defined SDM, and understand what leads patients to label a specific, decision-making process as shared. Methods Qualitative interviews were conducted with 23 primary care patients following a recent appointment. Patients were asked about the meaning of SDM and about specific decisions that they labeled as shared. Interviews were coded using qualitative content analysis. Results Patients’ conceptual definition of SDM included four components of an interactive exchange prior to making the decision: both doctor and patient share information, both are open-minded and respectful, patient self-advocacy, and a personalized physician recommendation. Additionally, a long-term trusting relationship helps foster SDM. In contrast, when asked about a specific decision labeled as shared, patients described a range of interactions with the only commonality being that the two parties came to a mutually agreed-upon decision. Conclusion There is no one-size-fits all process that leads patients to label a decision as shared. Rather, the outcome of “agreement” may be more important than the actual decision-making process for patients to label a decision as shared. Practice implications Studies are needed to better understand how longitudinal communication between patient and physicians and patient self-advocacy behaviors affect patient perceptions of SDM.

To evaluate the patient, physician, and visit-related factors associated with patient ratings of positive physician relational communication.Pre- and post-visit surveys were conducted with 485 patients attending a routine periodic health exam with one of 64 participating physicians. The audio-recorded visits were coded for elements of patient-physician communication including assertive responses, partnership building, question asking, supportive talk, and expressions of concern.Patient reports of positive physician relational communication were associated with patient perceptions of how well the physician understood the patient's health care preferences and values, a patient-physician interaction outside of the exam room, and physician-prompted patient expressions of concern.In addition to a patient's perception of their relationship with their physician going into the visit, relatively simple acts like extending the interaction beyond the exam room and ensuring that patients feel invited to express concerns they may have during the visit may influence patient perceptions of physician relational communication.This study offers preliminary support for the idea that relational communication and its associated benefits may be fostered through simple physician-driven acts such as interacting with patients outside of the exam room and encouraging patients to express concerns within the visit.