Socioeconomic Factors and Adherence to Health Care Recommendations in Adolescent and Young Adult Cancer Survivors.

Purpose: The majority of adolescent and young adult (AYA) cancer survivors do not receive recommended health care surveillance after therapy. We used cross-sectional survey data to evaluate the impact of income, education, marital status, and insurance on health care adherence among AYA survivors. Methods: Eligible survivors were 18-39 years at diagnosis with invasive malignancy, 1-5 years from therapy completion. Online surveys assessed sociodemographic factors and self-report of completion of recommended health care services. Diagnosis and treatment data were abstracted from medical records. Multivariable logistic regression calculated odds ratios (ORs) and 95% confidence intervals (CIs) for adherence in relation to socioeconomic status and support. Results: Of 344 participants, 36% were adherent to at least 80% of recommendations. Adherence varied by cancer type: 34% for breast cancer, 52% for leukemia/lymphoma, 23% for other tumors. Adherence rates were similar among White, Asian, and Hispanic/Latinx patients. Lower adherence was associated with lower education (OR: 0.43; 95% CI: 0.23-0.80 for <4-year college degree) and lower annual income (OR: 0.51; 95% CI: 0.28-0.95 for $41,000-$80,000; OR: 0.40; 95% CI: 0.19-0.86 for ≤$40,000). Adherence decreased with decreasing income levels among those who were 1 to less than 3 years after diagnosis (OR: 0.25; 95% CI: 0.07-0.93 for $81,000-$120,000; OR: 0.24; 95% CI: 0.07-0.84 for $41,000-$80,000; OR: 0.13; 95% CI: 0.03-0.60 for ≤$40,000). Conclusion: Risk of nonadherence to health care guidelines was associated with lower income and lower education among AYA cancer survivors. Identification of these risks and related barriers to adherence in AYA survivors will inform interventions designed to meet needs of these high-risk groups, particularly during the first years after diagnosis. Trial Registration: NCT02192333.

Cancer survivorship care for young adults: a risk-stratified, multicenter randomized controlled trial to improve symptoms.

PURPOSE: Young adult (YA) cancer survivors have high rates of adverse health and psychosocial outcomes. This risk-stratified, multicenter, randomized controlled trial (RCT) compared a self-management survivorship intervention to usual care in YA survivors with symptoms of cancer-related distress, insomnia, fatigue, pain, and/or depression. METHODS: Eligibility included age 18-39 at diagnosis with an invasive malignancy in the previous 1-5 years. Baseline assessment determined "high need" participants, with 2-5 elevated targeted symptoms. We randomized high need participants to intervention or usual care and offered intervention participants a survivorship clinic visit, which included mutually decided action plans for symptoms. Follow-up calls at 1 and 3 months after the clinic visit reviewed action plan progress. Outcomes compared rates of improved symptoms for intervention vs usual care at 6 months and 12 months. RESULTS: N = 344 completed baseline assessment, with n = 147 (43%) categorized as high need and randomized. Of n = 73 randomized to the intervention, n = 42 (58%) did not attend their survivorship clinic visit. In intent-to-treat analyses, aggregate symptom scores did not differ between arms, though distress improved for 46% in the intervention arm at 6 months compared to 18% in usual care (p = 0.03) among those with elevated distress at baseline. CONCLUSIONS: Distress improved for YAs who received self-management survivorship care. However, the study demonstrates a need for alternative strategies for providing YA survivorship care. TRIAL REGISTRATION: NCT02192333 IMPLICATIONS FOR CANCER SURVIVORS: While YA survivors demonstrate some improved distress when provided survivorship care, to make care accessible and effective, they require options such as remote delivery of care.

A Multivariate Analysis of Pain and Distress in Adults Undergoing BMAB.

Clinicians routinely perform bone marrow aspiration and biopsy (BMAB) to diagnose cancer and evaluate disease status; however, few studies address pain and distress with BMAB. A prospective descriptive-correlational design examined patients' (N = 152) ratings of pain intensity (numeric rating scale, 0-10) and distress (distress thermometer) at baseline and 5 min and 1 hr postprocedure. Data were analyzed using descriptive statistics, chi-square, and linear regression models. Mean postprocedure pain intensity at 5 min was moderate, 5.56 (SD = 3.03), and opioid use was associated with decreased pain at 1 hr (p < .001). Preprocedure administration of anxiolytics had no significant effect on distress reduction (p = .88). Being female, first-time biopsy, and increased preprocedure pain were significant predictors of postprocedure distress (p < .001). Treating anxiety alone may not be sufficient to lessen pain and distress. Individualized plans of care should be based on patient risk and response to procedure.

Lasting effects of cancer and its treatment on employment and finances in adolescent and young adult cancer survivors.

BACKGROUND: The impact of cancer and its treatment on employment and financial burden in adolescents/young adults (AYAs) is not fully known. METHODS: Eligibility for this cross-sectional study of AYA cancer survivors included the diagnosis of a malignancy between ages 18 and 39 years and survey completion within 1 to 5 years from diagnosis and ≥1 year after therapy completion. Participants were selected randomly from the tumor registries of 7 participating sites and completed an online patient-reported outcomes survey to assess employment and financial concerns. Treatment data were abstracted from medical records. Data were analyzed across diagnoses and by tumor site using logistic regression and Wald-based 95% confidence intervals adjusting for age (categorized), sex, insurance status, education (categorized), and treatment exposures. RESULTS: Participants included 872 survivors (breast cancer, n = 241; thyroid cancer, n = 126; leukemia/lymphoma, n = 163; other malignancies, n = 342). Exposure to chemotherapy in breast cancer survivors was associated with an increase in self-reported mental impairment in work tasks (odds ratio [OR], 2.66) and taking unpaid time off (OR, 2.62); survivors of "other" malignancies reported an increase in mental impairment of work tasks (OR, 3.67) and borrowing >$10,000 (OR, 3.43). Radiation exposure was associated with an increase of mental impairment in work tasks (OR, 2.05) in breast cancer survivors, taking extended paid time off work in thyroid cancer survivors (OR, 5.05), and physical impairment in work tasks in survivors of "other" malignancies (OR, 3.11). Finally, in survivors of "other" malignancies, having undergone surgery was associated with an increase in physical (OR, 3.11) and mental impairment (OR, 2.31) of work tasks. CONCLUSIONS: Cancer treatment has a significant impact on AYA survivors' physical and mental work capacity and time off from work.

Survivorship Care Planning for Young Adults After Cancer Treatment: Understanding Care Patterns and Patient-Reported Outcomes.

PURPOSE: Young adult survivors (YAS) of cancer experience late effects of treatment similar to older adult survivors (AS). Online health tools such as Internet-based survivorship care plans (SCPs) can provide access to information about late effects and symptom management, but little is known about SCP patterns of use among YAS. METHODS: An Internet-based cross-sectional survey was completed over 24 months. Participants were individuals diagnosed with cancer between 18 and 39 years (YAS, n = 611) or 40-60 years (AS, n = 1742), who were 2-20 years postdiagnosis, and who created an Internet-based SCP. Demographics, treatment-related variables, satisfaction with SCP, communication of SCP, and patient-reported late effects (fatigue, neurocognitive, sexual, cardiovascular, pulmonary, or second cancers) were collected. RESULTS: YAS were primarily female (71%), Caucasian (78%), college educated (65%), and generated the SCP without assistance (76%). YAS reported satisfaction with content (93%) and shared content with providers (71%). A higher proportion of YAS than AS were male (29% vs. 17%, p < 0.001), lived internationally (23% vs. 17%, p = 0.003), and endorsed oncologist-led survivorship care (47% vs. 41%, p = 0.001). YAS reported concerns about neurocognitive performance (56%) and fatigue (50%). Overall, YAS reported equivalent or fewer late effects than AS across all domains. CONCLUSIONS: YAS report high satisfaction with the online SCP, as well as a high symptom burden, although the latter were reported less than for AS.

The use of a patient-reported outcome questionnaire to assess cancer survivorship concerns and psychosocial outcomes among recent survivors.

PURPOSE: Survivor distress is well represented in the literature, but less is known about survivors' concerns and how these relate to adaptation. Using a newly designed Survivorship Concern Scale, we examined concerns and their relationship to psychosocial adaptation among recent breast cancer (BC) survivors. METHODS: One hundred forty-three stage 0-III BC survivors completed an online assessment including the Survivorship Concern Scale (0-3 scale; alpha = 0.91), unmet needs, quality of life (QoL), and anxiety and depressive symptoms within 1 year of end of treatment. RESULTS: Participants were predominately white (76%), middle-aged (51 years), married (70%), and college educated (79%). Eighty-two percent were stage I or II at diagnosis. Mean degree of survivorship concern was moderate (M = 1.75, SD = 0.70) though variable (range = 0.12-3.00). Survivorship concerns were not significantly related to disease, treatment, or demographic variables except income (p = 0.02). Degree of survivorship concern was significantly associated with all indices of psychosocial adaptation: unmet need (r = 0.50), physical and mental QoL (r = -0.32 and r = -0.32, respectively), depressive symptoms (r = 0.21), and anxiety symptoms (r = 0.51; all p < 0.001). Binary logistic regression suggested that each one-point increase in degree of average concern increased the odds for elevated depressive symptoms by 2.83 (p = 0.03) and increased the odds of elevated anxiety symptoms by 3.69 (p < 0.001). CONCLUSIONS: Survivorship concerns in the year following treatment are moderate but variable. Concerns are associated with QoL, unmet need, and psychosocial adaptation. Adequately addressing concerns may be a way to improve psychosocial outcomes early in the survivorship trajectory.

Feasibility Study of an Electronic Interface Between Internet-Based Survivorship Care Plans and Electronic Medical Records.

PURPOSE: Survivorship care plans (SCPs) are recommended for all cancer survivors. Myriad barriers to implementation exist. This study was performed to evaluate the feasibility of interface development between an SCP and an electronic medical record (EMR). METHODS: An information technology application was developed to extract data from the EMR in use at our center (Epic). Data were transferred to autopopulate an Internet-based tool for creation of SCPs (LIVESTRONG Care Plan) that had been previously used for the creation of more than 35,000 plans. RESULTS: Data (demographic characteristics, surgeries, chemotherapy drugs, radiation site) were extracted from the EMR and transferred to the care plan platform, without transfer of protected health information. Care plans were created and transferred back to the EMR. During clinical testing, SCPs were created by nurse practitioners during scheduled clinic visits for 146 sequential, eligible patients (67% breast cancer, 33% colorectal cancer). All patients received completed care for a single cancer diagnosis at our institution. All data points that were automatically populated were reviewed by practitioners, and missing/blank data fields were populated manually when necessary. Data entered into generated care plans were accurate in 97% of audited cases, and the process of care plan generation could be completed in < 1 minute. CONCLUSION: This is a feasible solution for the autopopulation of SCPs from the EMR. It represents a future methodology through which widespread implementation of SCPs may be undertaken. Future directions include further clinical testing, assessment of provider-perceived usefulness, and integration into routine clinical care.

Comparing genetic counselor's and patient's perceptions of needs in prenatal chromosomal microarray testing.

OBJECTIVE: Chromosome microarray analysis is poised to take a significant place in the prenatal setting given its increased yield over standard karyotyping, but concerns regarding ethical and counseling challenges remain, especially associated with the risk of uncertain and incidental findings. Guidelines recommend patients receiving prenatal screening to undergo genetic counseling prior to testing, but little is known about women's specific pre-testing and post-testing informational needs, as well as their preference for return of various types of results. METHODS: The present study surveys 199 prenatal genetic counselors who have counseled patients undergoing chromosome microarray analysis testing and 152 women who have undergone testing on the importance of understanding pre-test information, return of various types of results, and resources made available following an abnormal finding. RESULTS: Counselors and patients agree on many aspects, although findings indicate patients consider all available information very important, while genetic counselors give more varying ratings. CONCLUSION: Counseling sessions would benefit from information personalized to a patient's particular needs and a shared decision-making model, to reduce informational overload and avoid unnecessary anxiety. Additionally, policies regarding the return of various types of results are needed. © 2015 John Wiley & Sons, Ltd.

Outcomes and satisfaction after delivery of a breast cancer survivorship care plan: results of a multicenter trial.

PURPOSE: Survivorship care plans (SCPs) have been suggested to reduce fragmentation of care experienced by cancer survivors. Acceptance of SCPs is high, but trials in the United States are few. This pilot study used a quasiexperimental design to examine the outcomes achieved by breast cancer survivors receiving a standardized SCP visit at one of seven comprehensive cancer centers. MATERIALS AND METHODS: Outcomes were assessed before and again 3 months after delivery of an SCP and included survivors' use of and satisfaction with SCPs, perceived knowledge about survivorship, and assessment of the quality and coordination of survivorship care. RESULTS: One hundred thirty-nine survivors of breast cancer completed baseline and follow-up measures and received a standardized SCP visit. Participants most commonly used SCP materials to make decisions about exercise (64%), which tests to receive and when (62%), and dietary changes (62%). Only 21% shared the SCP with their primary care provider during that time. Satisfaction with the SCP was high, with 90% of participants reporting being at least satisfied with the SCP. Perceived knowledge about survivorship improved after SCP delivery, as did perceived care coordination and the provider's knowledge of the effects of cancer on survivors (all P < .001). Individuals closer to the time of diagnosis reported greater satisfaction with and use of SCPs. CONCLUSION: This study demonstrates improvements in perceived knowledge and quality of survivorship care after receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and those closer to diagnosis reported greater satisfaction with and use of the materials.

Role of patient treatment beliefs and provider characteristics in establishing patient-provider relationships.

BACKGROUND: Positive patient-provider relationships have been associated with improved depression treatment outcomes. Little is known about how patient treatment beliefs influence patient-provider relationships, specifically treatment alliance and shared decision making in primary care (PC). OBJECTIVE: We evaluated the relationship between patient treatment beliefs and patient-provider relationships by gender, race and current depression. METHODS: We used a deductive parallel convergent mixed method design with cross-sectional data. Participants were 227 Black and White patients presenting with depression symptoms in PC settings. Individuals were randomized into either a quantitative survey (n = 198) or qualitative interview (n = 29) group. We used multiple ordinary least squares regression to evaluate the association between patient beliefs, as measured by the Treatment Beliefs Scale and the Medication Beliefs Scale, and treatment alliance or shared decision making. We concurrently conducted thematic analyses of qualitative semistructured interview data to explicate the nature of patient-provider relationships. RESULTS: We found that patients who believed their provider would respectfully facilitate depression treatment reported greater bond, openness and shared decision making with their provider. We also identified qualitative themes of physicians listening to, caring about and respecting patients. Empathy and emotive expression increased patient trust in PC providers as facilitators of depression treatment. CONCLUSIONS: This work systematically demonstrated what many providers anecdotally believe: PC environments in which individuals feel safe sharing psychological distress are essential to early identification and treatment of depression. Interprofessional skills-based training in attentiveness and active listening may influence the effectiveness of depression intervention.

Health behaviors among testicular cancer survivors.

BACKGROUND: With modern treatment, more than 95% of American men who are diagnosed with testicular cancer will be cured. Although there is growing evidence that these individuals may face heightened risk of cardiovascular disease after chemotherapy, there is a paucity of research to objectively classify health-promoting behaviors in this population and to identify the barriers to improving their health behaviors. OBJECTIVES: To identify health behavior patterns in a group of testicular cancer survivors (TCSs) and the barriers to more positive health behaviors and to examine the relationship between barriers, health behaviors, and quality of life (QOL). METHODS: TCSs from the Pennsylvania State Cancer Registry who had been diagnosed during 1990-2005 completed a comprehensive survey about QOL, health behaviors, and barriers to optimal healthy behaviors. QOL, health behaviors, and the barriers were assessed for 189 respondents. RESULTS: Smoking (25%), risky drinking (35%), elevated body-mass index (83%), poor diet (95% did not meet the guidelines for fruit and vegetable intake), and inadequate exercise (50%) were common. Barriers to achieving optimal health behaviors were categorized as either cancer-related or competing demands. Cancer-related barriers contributed to worse physical QOL, whereas competing demands related to worse mental-health-related QOL. LIMITATIONS: Our sample size was moderate and self-selected. In addition, we used self-reports rather than the more standardized observation or interview-based data collection. CONCLUSION: TCSs demonstrate behaviors that put them at increased risk for future cardiovascular disease and complications. Interventions aimed at reducing tobacco and risky alcohol use and improving dietary and physical activity levels are needed. FUNDING/SPONSORSHIP: NCI grant number 1R03CA124217; the Livestrong Foundation. DISCLOSURES: The authors have no disclosures.

Mentorship and pursuit of academic medicine careers: a mixed methods study of residents from diverse backgrounds.

BACKGROUND: Mentorship influences career planning, academic productivity, professional satisfaction, and most notably, the pursuit of academic medicine careers. Little is known about the role of mentoring in recruiting Black/African American and Hispanic/Latino residents into academia. The objective of this study was to assess the influence of mentoring on academic medicine career choice among a cohort of racially and ethnically diverse residents. METHODS: A strategic convenience sample of U.S. residents attending national professional conferences between March and July 2010; residents completed a quantitative survey and a subset participated in focus groups. RESULTS: Of the 250 residents, 183 (73%) completed surveys and 48 participated in focus groups. Thirty-eight percent of residents were white, 31% Black/African American, 17% Asian/other, and 14% Hispanic/Latino. Most respondents (93%) reported that mentorship was important for entering academia, and 70% reported having sufficient mentorship to pursue academic careers. Three themes about mentorship emerged from focus groups: (1) qualities of successful mentorship models; (2) perceived benefits of mentorship; and (3) the value of racial/ethnic and gender concordance. Residents preferred mentors they selected rather than ones assigned to them, and expressed concern about faculty using checklists. Black/African American, Hispanic/Latino, and female residents described actively seeking out mentors of the same race/ethnicity and gender, but expressed difficulty finding such mentors. Lack of racial/ethnic concordance was perceived as an obstacle for minority mentees, requiring explanation of the context and nuances of their perspectives and situations to non-minority mentors. CONCLUSIONS: The majority of residents in this study reported having access to mentors. However, data show that the lack of diverse faculty mentors may impede diverse residents' satisfaction and benefit from mentorship relationships compared to white residents. These findings are important for residency programs striving to enhance resident mentorship and for institutions working to diversify their faculty and staff to achieve institutional excellence.

The effects of a problem solving-based intervention on depressive symptoms and HIV medication adherence are independent.

Depression and depressive symptoms predict poor adherence to medical therapy, but the association is complex, nonspecific, and difficult to interpret. Understanding this association may help to identify the mechanism explaining the results of interventions that improve both medical therapy adherence and depressive symptoms as well as determine the importance of targeting depression in adherence interventions. We previously demonstrated that Managed Problem Solving (MAPS) focused on HIV medication adherence improved adherence and viral load in patients initiating a new antiretroviral regimen. Here, we assessed whether MAPS improved depressive symptoms and in turn, whether changes in depressive symptoms mediated changes in adherence and treatment outcomes. We compared MAPS to usual care with respect to presence of depressive symptoms during the trial using logistic regression. We then assessed whether MAPS' effect on depressive symptoms mediated the relationship between MAPS and adherence and virologic outcomes using linear and logistic regression, respectively. Mediation was defined by the disappearance of the mathematical association between MAPS and the outcomes when the proposed mediator was included in regression models. Although MAPS participants had a lower rate of depressive symptoms (OR = 0.45, 95% confidence interval 0.21-0.93), there was no evidence of mediation of the effects of MAPS on adherence and virological outcome by improvements in depression. Thus, interventions for medication adherence may not need to address depressive symptoms in order to impact both adherence and depression; this remains to be confirmed, however, in other data.

Metrics to evaluate treatment summaries and survivorship care plans: a scorecard.

PURPOSE: The Institute of Medicine (IOM) and Commission on Cancer have called for provision of treatment summaries (TSs) and survivorship care plans (SCPs) at the end of primary cancer therapy and endorsed guidelines for content. Institutions are providing TS/SCPs but with little guidance concerning concordance with IOM recommended content. This manuscript presents a recently developed tool to allow rating of breast cancer-specific TS/SCPs as a model for assessing concordance with IOM recommendations and facilitating research and clinical fidelity. METHOD: An interdisciplinary team developed items mapped to the IOM recommendations for TS/SCP content as well as scoring rules. Dual raters used this tool to independently assess 65 completed TS/SCPs from 13 different cancer treatment facilities affiliated with the LIVESTRONG Survivorship Centers of Excellence to assess reliability. RESULTS: The final set of measures contained 92 items covering TSs and SCPs. The TS scale consisted of 13 informational domains across 60 items, while the SCP scale had 10 domains across 32 items. Inter-rater reliability within TSs indicated substantial agreement (M kappa = 0.76, CI = 0.73-0.79), and interclass correlation (ICC) was high (ICC = 0.85, CI = 0.76-0.91). For the SCP scale, inter-rater reliability was also substantial (M kappa = 0.66, CI = 0.62-0.70), as was interclass correlation (ICC = 0.75, CI = 0.62-0.84). CONCLUSION: Concordance with IOM recommendations for TS/SCP information can be reliably assessed using this instrument, which should facilitate implementation efforts, allow comparison of different TS/SCPs, and facilitate research into the utility of TS/SCPs including which elements are essential.

Prevalence and correlates of sexual morbidity in long-term breast cancer survivors.

OBJECTIVE: Breast cancer survivors report adverse sexual effects (sexual morbidity) such as disrupted sexual function, sexual distress and body dissatisfaction. However, most studies have failed to evaluate the persistence of these effects in long-term survivors. The present study comprehensively assessed the prevalence and predictors of sexual/body image problems among survivors three or more years post diagnosis. DESIGN/OUTCOME MEASURES: Eighty-three breast cancer survivors completed surveys a median of seven years post diagnosis. Survey items probed demographic, diagnostic and clinical information, in addition to sexual activity, sexual function (Female Sexual Function Index [FSFI]), body image, and distress regarding body changes and sexual problems (Female Sexual Distress Scale-revised; FSDS-R). RESULTS: Seventy-seven percent of all participants and 60% of sexually active participants qualified for sexual dysfunction based on the FSFI. Between 37 and 51% met criteria for female sexual dysfunction, based on two FSDS-R clinical cut-offs. Body satisfaction was worse than normative values, while body change stress was mid-range. Notable sexual morbidity predictors included mastectomy, which was associated with worse sexual/body change distress, and post-treatment weight gain, which predicted greater body dissatisfaction/body change stress. CONCLUSIONS: Breast cancer survivors report substantial sexual morbidity years after treatment, especially after mastectomy or post-treatment weight gain. Breast cancer patients and their providers should be aware of these potential sexual effects.

Managed problem solving for antiretroviral therapy adherence: a randomized trial.

BACKGROUND: Adherence to antiretroviral therapy is critical to successful treatment of human immunodeficiency virus (HIV). Few interventions have been demonstrated to improve both adherence and virologic outcomes. We sought to determine whether an intervention derived from problem solving theory, Managed Problem Solving (MAPS), would improve antiretroviral outcomes. METHODS: We conducted a randomized investigator blind trial of MAPS compared with usual care in HIV-1 infected individuals at 3 HIV clinics in Philadelphia, Pennsylvania. Eligible patients had plasma HIV-1 viral loads greater than 1000 copies/mL and were initiating or changing therapy. Managed Problem Solving consists of 4 in-person and 12 telephone-based meetings with a trained interventionist, then monthly follow-up calls for a year. Primary outcome was medication adherence measured using electronic monitors, summarized as fraction of doses taken quarterly over 1 year. Secondary outcome was undetectable HIV viral load over 1 year. We assessed 218 for eligibility, with 190 eligible and 180 enrolled, 91 randomized to MAPS and 89 to usual care. Fifty-six participants were lost to follow-up: 33 in the MAPS group and 23 in usual care group. RESULTS: In primary intention-to-treat analyses, the odds of being in a higher adherence category was 1.78 (95% CI,1.07-2.96) times greater for MAPS than usual care. In secondary analyses, the odds of an undetectable viral load was 1.48 (95% CI, 0.94-2.31) times greater for MAPS than usual care. In as-treated analyses, the effect of MAPS was stronger for both outcomes. There was neither a difference by prior treatment status nor change in effect over time. CONCLUSIONS: Managed Problem Solving is an effective antiretroviral adherence intervention over the first year with a new regimen. It was equally effective at improving adherence in treatment experienced and naïve patients and did not lose effect over time. Implementation of MAPS should be strongly considered where resources are available. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00130273.