Oncology Care Providers Research Articles

Oncology care provider perspectives on exercise promotion in people with cancer: an examination of knowledge, practices, barriers, and facilitators.

Despite the reported benefits of physical activity in alleviating the impact of cancer and its treatments, oncology care providers (OCPs) are not routinely discussing exercise with their patients, suggesting a knowledge to action gap. We sought to determine OCP's knowledge, beliefs, barriers, and facilitators to exercise discussion. A survey was administered to OCPs at the cancer center in Hamilton, Ontario. Questions comprised of demographics, knowledge and beliefs regarding exercise guidelines, and barriers and facilitators to exercise discussion. Analysis of survey responses was descriptive. Pearson's chi-squared test was used to examine select associations. There were 120 respondents (61% response rate) representing a diversity of professions. Approximately, 80% of OCPs were not aware of any exercise guidelines in cancer and self-reported poor knowledge on when, how, and which patients to refer to exercise programs. OCPs who reported meeting Canada's Physical Activity guidelines were significantly more likely to identify correct guidelines (p=0.023) and to report good knowledge on how to provide exercise counseling (p=0.014). Across OCP groups, barriers to exercise discussion included poor knowledge, lack of time, and safety concerns. Most felt that educational sessions and having an exercise specialist on the clinical team would be beneficial. OCPs have low knowledge regarding exercise counseling, but believe that discussing exercise is a multidisciplinary task and expressed a desire for further training. Interventions will require a multi-pronged approach including education for OCPs and guidance on assessment for exercise safety.

Preserving fertility for adolescent and young adult cancer survivors: A community model.

109 Background: Loss of fertility is a significant late effect of cancer treatment for those patients diagnosed during their reproductive years. This loss is a source of considerable distress for patients who have not yet started or completed building their families. Fertility preservation counseling to discuss reproductive concerns regardless of treatment phase can ease this burden. However, due to access- and health-related barriers, approximately half of oncologists report having never referred a patient for a fertility consultation, and as many as 60% of cancer survivors do not recall receiving this information from their healthcare team at time of diagnosis. Methods: The Moncrief Cancer Institute (MCI) Fertility Preservation Program synchronizes services between oncology care providers and fertility specialists. This model is designed to remove discomfort associated with discussing options while enhancing access to care by arranging physician and patient education opportunities specific to fertility preservation and the treatment options available, patient care coordination for fertility preservation treatment, and financial assistance for fertility preservation treatment for underinsured and uninsured adolescent and young adult cancer patients. Results: Referrals for fertility counseling have been provided from 5 institutions through an established referral network comprised of non-profit organizations, local hospitals, and private practice providers. MCI partners with 2 reproductive specialty care groups who offer treatment at reduced rates, which MCI further subsidizes based on financial need. No patients are turned away for inability to pay. The institutions that MCI has targeted for education and partnerships support an environment that meet the distinct needs of adolescent and young adult patients with cancer. Conclusions: Program impact is evaluated by the number of patients and providers receiving education, and the number of patients receiving care coordination and/or financial support for fertility preservation treatment. In the fight against cancer, MCI is assisting patients to protect their future families through fertility preservation education and care coordination.

Abstract A23: Fertility and Reproductive Health Resources Reported by Nurses Delivering Care for Minority Cancer Patients

Abstract Background: African American and Hispanic cancer patients face disparities in cancer care affecting quality of life (QoL) and other health related outcomes. Reproductive health (RH) topics such as risk of infertility due to treatment, contraception, and fertility preservation (FP) are among these QoL issues. The American Society of Clinical Oncology (ASCO) clinical practice guidelines suggest oncology care providers discuss potential fertility loss and refer adolescent and young adult (AYA) patients to reproductive specialists. Yet, recent studies of survivors and retrospective chart reviews show sub optimal rates of discussions and referrals. Less is known about the availability of FP and RH resources for racial/ethnic minority cancer patients. The Educating Nurses about Reproductive Health Issues in Cancer Healthcare (ENRICH) program seeks to improve nurses' communication skills regarding FP and RH issues with AYA oncology patients. In the current study, we explored availability of FP and RH resources reported by ENRICH participants providing care to African American or Hispanic cancer patients. Methods: Prior to starting the training program, applicants completed information about demographic characteristics, practice setting, and patient population, including an estimate of the proportion of their patients by race/ethnicity (0-25%, 26-50%, 51-75%, and 76-100%). Trainees also provided information about availability (yes/no) of FP and RH institutional resources including: established FP referral guidelines/procedures, reproductive endocrinologist and infertility specialist (REI) on staff, institutional partnership with an REI, RH material for staff, RH patient education material, and “other” RH resources. For the current analysis we used Chi-square tests to compare those who reported a patient population of <25% of African American and Hispanic patients compared to those who reported >26% patients population belonging to these particular racial/ethnic groups across all institutional FP and RH resources. Data on other racial/ethnic groups (White, Asian, Native Hawaiian, and American Indian) were collected, but did not provide sufficient variability with respect to the proportion of patients from those groups to conduct additional analyses. Results: A total of 104 nurses participated in the 2016 ENRICH training program cohort. The majority were Non-Hispanic (82%) and White (90%), and female (99%). On average, nurses reported 14 years of experience, more than half (59%) had at least a bachelor's degree and worked in academic institutions (66%). Of the participating nurses, 50% reported <25% of their patient population was African American; 50% reported their African American patient population was >26%. Approximately half (59%) served <25% Hispanic patients and 41% (n=43) identified >26% of their patients being Hispanic. Regardless of the proportion of minority patients served, reported availability of FP and RH resources was low to moderate. For example, among only 37% of nurses serving majority Hispanic patients work at institutions with an REI on staff and 27% of those serving majority African American patients had institutional partnerships with REIs. However, among those providing care for Hispanics, those with a greater proportion of Hispanic patients reported higher frequencies of having an established FP referral guidelines/procedures (38% vs 60%) and institutional partnership with an REI (25% vs. 49%) compared to those reporting a smaller proportion (p<0.05). Conclusion: Available data suggest that among nurses participating in the ENRICH program, availability of FP and RH resources for minority cancer patients are low to moderate. One of the ENRICH goals is to impact individual and workplace level changes to facilitate discussion of FP and RH. Future directions include surveying ENRICH participants' at 6 months and 1 year after course completion to assess if the program aided in increasing availability of FP and RH resources among those serving minority patients. Citation Format: Susan Vadaparampil, Meghan Bowman-Curci, Cathy Meade, Clement Gwede, Janella Hudson, Gwendolyn Quinn. Fertility and Reproductive Health Resources Reported by Nurses Delivering Care for Minority Cancer Patients. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A23.

A model of early integration of palliative care into oncology care for patients with metastatic colorectal cancer.

142 Background: Current NCCN guidelines recommend that “institutions should develop processes for integrating palliative care into cancer care.” However, it is not clear what the best method is for implementing this integrated care. Palliative care needs specific to patients with metastatic colorectal cancer (mCRC) and best practices for integration of outpatient palliative and oncologic care in mCRC are not well understood. Methods: We conducted a pre-post prospective cohort study to evaluate the palliative care needs of mCRC patients and the implementation of an integrated palliative care program. In both the control and implementation phase, we enrolled patients with mCRC within 90 days of diagnosis or establishing care for mCRC at UCSF. Patients were surveyed regarding their symptoms, quality of life, psychosocial concerns, functional status and understanding of prognosis. During the control phase, patients received usual oncologic care. Based on survey results from the control phase, we designed a palliative care program to target the needs identified. In the intervention phase, patients are receiving longitudinal palliative care integrated into their usual cancer care. Results: The 30 patients in the control phase reported anorexia, fatigue and poor quality of life as their most common symptoms. Common psychosocial challenges were transportation, insurance/financial and difficulty with treatment decisions. Patients also had unrealistic expectations of their prognosis. In order to improve these identified issues, we designed and implemented an integrated palliative care program that includes weekly multidisciplinary meetings with oncology and palliative care providers and proactive palliative care visits from the time of diagnosis, which occur within the oncology clinic at a time that coincides with oncology visits. Conclusions: Physical symptoms, psychosocial concerns and poor prognostic awareness are common among patients with mCRC. We have implemented an integrated palliative care program to address these needs. Evaluation of the effectiveness of this intervention is ongoing.

Interventions to improve care coordination between primary healthcare and oncology care providers: a systematic review

Coordination of patient care between primary care and oncology care providers is vital to care quality and outcomes across the cancer continuum, yet it is known to be challenging. We conducted a systematic review to evaluate current or new models of care and/or interventions aimed at improving coordination between primary care and oncology care providers for patients with adult breast and/or colorectal cancer. MEDLINE, EMBASE, CINAHL, Cochrane Library Database of Systematic Reviews, and the Centre for Reviews and Dissemination were searched for existing English language studies published between January 2000 and 15 May 2015. Systematic reviews, meta-analyses, randomised controlled trials (RCTs) and non-randomised studies were included if they evaluated a specific model/intervention that was designed to improve care coordination between primary care and oncology care providers, for any stage of the cancer continuum, for patients with adult breast and/or colorectal cancer. Two reviewers extracted data and assessed risk of bias. Twenty-two studies (5 systematic reviews, 6 RCTs and 11 non-randomised studies) were included and varied with respect to the targeted phase of the cancer continuum, type of model or intervention tested, and outcome measures. The majority of studies showed no statistically significant changes in any patient, provider or system outcomes. Owing to conceptual and methodological limitations in this field, the review is unable to provide specific conclusions about the most effective or preferred model/intervention to improve care coordination. Imprecise results that lack generalisability and definitiveness provide limited evidence to base the development of future interventions and policies.Trial registration numberCRD42015025006.

The Relevance of Hereditary Cancer Risks to Precision Oncology: What Should Providers Consider When Conducting Tumor Genomic Profiling?

Through tumor genomic profiling (TGP), existing and novel treatments can be selected to better target the specific dysregulated molecular pathways that drive growth and spread of a patient's tumor. Although the primary purpose of TGP is to detect targetable somatic mutations for treatment, TGP may also uncover germline mutations with important implications for patients and family members. Oncology care providers should be aware of the hereditary cancer risks associated with genes commonly tested by TGP. Further, patients should be informed about the possible discovery of hereditary cancer risk information and the relevance of this information to their health and that of family members, and should have their preferences toward further evaluation of hereditary risk information that could be revealed by TGP documented in the medical record and followed.

Single Female Breast Cancer Patients' Perspectives on Intimate Relationships.

This qualitative study examined how female breast cancer patients without partners conceptualized their relationship status. Qualitative data were collected from 20 participants who did not have partners during diagnosis and treatment. Phenomenology informed the methodology and thematic analysis. Breast cancer patients without partners discussed how they made meaning of their relationship status within the context of their cancer experience and barriers they faced dating post-diagnosis or treatment. Oncology care providers, public health professionals, and family scientists can use the study results to better understand the specific concerns and experiences of breast cancer patients without partners. Additional implications of these findings for patients, practice, and research are discussed.

Lifestyle-related effects of the web-based Kanker Nazorg Wijzer (Cancer Aftercare Guide) intervention for cancer survivors: a randomized controlled trial

PurposeThe web-based Kanker Nazorg Wijzer (Cancer Aftercare Guide) responds to the needs of cancer survivors and oncology care providers to improve the counseling related to self-management of lifestyle and psychosocial challenges. In present study, overall intervention effects and the effects of using specific components were evaluated on vegetable, fruit, whole grain bread, and fish consumption, physical activity (PA), and smoking behavior.MethodsCancer survivors from 21 Dutch hospitals were recruited for a randomized controlled trial (N = 432). Intervention effects after 6 months were evaluated using multilevel linear regression analysis (complete cases and intention-to-treat). By conducting moderation analyses, additional effects of following the behavior-related modules were explored. The false discovery rate correction was applied to account for multiple testing.ResultsAfter 6 months, 409 participants completed follow-up (dropout = 11.5 %). Indications were found that access to the intervention may result in increases of moderate PA and vegetable intake. The moderate PA increase was meaningful: 74.74 min p/w higher increase in the intervention condition. Effect sizes of moderate PA (d = .25) and vegetable (d = .37) consumption were comparable to prior effective interventions. Visiting behavior-related modules affected moderate PA, fruit, and fish consumption. However, after correction for multiple testing, significances expired. No significant intervention effect was found on smoking behavior due to low numbers of smokers.Implications for Cancer SurvivorsAlthough the effectiveness was only shown only to a limited extend, this study provided several indications that this theory-based, comprehensive, and personalized eHealth intervention provides valuable content to complement usual cancer aftercare.

Integrating the primary care physician into cancer follow-up.

102 Background: After a diagnosis of breast cancer, it can be difficult for patients to understand the role their primary care physician (PCP) should play in their follow up care. Methods: 65 women (mean age 60 years, SD = 10) with breast cancer (stage 0-III) were seen by a nurse practitioner for a 60-90 minute consultative survivorship visit and received a treatment summary and personalized survivorship care plan (SCP) utilizing Carevive Care Planning Systems software. The Carevive system incorporates patient-reported and clinical data to create tailored care plans with personalized recommendations for follow up care and supportive referrals, including direction to follow up with primary care for specific care and health maintenance activities. Approximately 6 weeks following their survivorship care visit, patients completed a survey assessing their use of and satisfaction with the SCP. Patients were advised that the SCP would be mailed to their referring oncologist and primary care physician. Results: Out of 65 sent, 35 surveys have been completed to date. Survivors were diagnosed approximately 10 months prior, and all were within 6 months following completion of treatment. All patients (100%) reported that they read, or planned to read, their survivorship care plan packet carefully. While all care plans included a recommendation to follow up with their PCP, only (71%) of survivors remembered receiving this recommendation. Of those who did, most (74%) had either seen or scheduled an appointment with their PCP. Patients who reported higher anxiety at the time of the survivorship visit were more likely to report that the follow up care plan helped them take action about seeing their PCP (p = .03). Conclusions: Coordination between primary and oncology care providers has previously been shown to improve the quality of care for cancer survivors. SCPs that emphasize the importance of and activities to be undertaken in primary care may help to improve this coordination. Continuation of this research will help to better understand how to integrate the primary care physician into cancer follow up care. Updated data will be shared at time of presentation.

Management and outcomes of localized esophageal and gastroesophageal junction cancer in older patients.

Older patients are commonly excluded from clinical trials in esophageal and gastroesophageal junction (gej) cancer. High-level evidence to guide management in this group is lacking. In the present study, we compared outcomes and described tolerance for curative- and noncurative-intent treatments among patients 70 years of age and older. We retrospectively reviewed all patients 70 years of age and older diagnosed with localized esophageal and gej cancer at our centre between 2005 and 2012. The 74 patients identified had a median age of 77 years. Of those patients, 62% received curative-intent treatment, consisting mostly of concomitant chemoradiation therapy (n = 43, 93%). Median overall survival for patients receiving curative-intent treatment was 18.6 months [95% confidence interval (ci): 13.0 to 28.0 months], with 23% being long-term survivors (95% ci: 11.3% to 36.7%). In contrast, patients receiving noncurative-intent treatment had a median overall survival of 8.8 months (95% ci: 6.7 to 11.9 months), with none being long-term survivors (p < 0.0001). Improvement of dysphagia was seen after curative (81%) or palliative radiotherapy (78%) in symptomatic patients, and toxicities were manageable. The odds of not receiving curative treatment was higher by a factor of 8.5 among patients 80 years of age or older compared with those 70-79 years of age (95% ci: 2.5 to 28.7). In managing older patients with esophageal and gej cancer, curative-intent treatment (compared with noncurative-intent treatment) leads to a significant survival benefit with a reasonable toxicity profile. Informed counselling of patients and their families about a curative treatment approach and efforts to increase awareness among oncology care providers are suggested.

Nipple-Areola Tattoos: Making the Right Referral.

To examine oncology care providers' knowledge of tattooing options for patients who have elected to have breast reconstruction as part of their breast cancer treatment. . Cross-sectional survey. A large metropolitan cancer center in New York and various locations across the United States . 68 oncology care providers who work with women with breast cancer, distributed into two groups. Descriptive statistics were used to summarize online survey responses for the two groups, with inferential comparisons made with logistic regression models . Healthcare profession, discussion of reconstructive tattoo options with patients, knowledge of providers of reconstructive tattoos outside of traditional healthcare settings, and recommendations made to patients . RNs were significantly less likely to recommend a professional tattoo artist to a patient than non-RNs, despite a similar proportion of both groups believing that a tattoo artist would provide the patient with a better tattoo than healthcare providers (HCPs). Additional research is needed to identify education deficits in HCPs regarding tattoo reconstruction options. HCPs are recommending potentially substandard options for nipple-areola tattooing, even though many believe that tattoo artists, who are outside of the traditional healthcare setting, could provide better outcomes for patients. Nurses and other HCPs require additional education about nipple-areola tattoo options for patients following breast cancer surgery .

Developing a treatment summary and survivorship care plan responsive to African-American breast cancer survivors.

Psycho-Oncology Psycho-Oncology (2015) Published online in Wiley Online Library (wileyonlinelibrary.com). DOI: 10.1002/pon.3939 Clinical Correspondence Developing a treatment summary and survivorship care plan responsive to African-American breast cancer survivors Kimlin Tam Ashing 1 *, Lily Lai 2 , Shirley Brown 3 , Kommah McDowell 3 , DeBorrah Carter 3 , June Smith 3 , Eudora Mitchell 3 , Rhonda H. Santifer 3 , Virginia Martin 3 , Betty Betts-Turner 3 , Odicie Fielder 4 and Vanessa Miller 5 CCARE, City of Hope National Medical Center, Duarte, CA, USA Department of Surgery, City of Hope National Medical Center, Duarte, CA, USA African American Cancer Coalition, Altadena, CA, USA Department of Clinical Oncology, City of Hope National Medical Center, Duarte, CA, USA Texas Christian University, Forth Worth, TX, USA *Correspondence to: CCARE, City of Hope National Medical Center, 1500 E Duarte Road, Duarte, CA 91010-3000, USA. E-mail: kashing@coh.org Received: 18 December 2014 Revised: 18 May 2015 Accepted: 15 July 2015 Dear Editor, Background African–American breast cancer survivors (AABCS) are understudied in the emerging survivorship care planning (treatment summary and survivorship care plan, TSSCP) literature. This article presents our TSSCP-African–American breast cancer (AABC) template, initially informed by a consensus review panel of survivor-advocates [1], and now in a format that is available for clinical application cultural, clinical, and socioecological modifications to the American Society of Clinical Oncology (ASCO) [4] Breast Cancer Adjuvant Treatment Plan and Summary and Survivorship Care Plan (v3 10/09) [5]. These advocates challenged the one-size-fits-all approach to TSSCPs and put forth recommendations towards the creation of a more patient-centered TSSCP that considers disease, clinical, and cultural characteristics for African– Americans. Based on this process, the TSSCP-AABC template was developed. TSSCP-AABCS evaluation Methods Methodological framework This project to develop a TSSCP-AABC template employed a two-phase, mixed-methods [2] design with an informative consensus panel to inform the initial TSSCP-AABC template. In this second phase, our stepwise approach towards the TSSCP template creation used a shared care model [3]. This model includes activated patients who joined oncology and primary care providers who provided input and evaluation to make available this current TSSCP-AABC template. Development of treatment summary and survivorship care plan The preliminary informative phase of the development of the TSSCP is described in detail elsewhere [1]; AABCS (N = 25) and community health advocates (N = 3) participated in three facilitated, structured, and informa- tive forums to review and provide input on relevant Copyright © 2015 John Wiley & Sons, Ltd. Participants Sixty healthcare professionals from research-based medical centers, community oncology and general medi- cal practices, and nurses associations were identified by the advocates and members of the first phase informative consensus team and recruited via mail or e-mail to be evaluators of the TSSCP-AABC template. Forty-two healthcare professional evaluators including oncology physicians (N = 5), primary care physicians (N = 2) psycho-oncology professionals (N = 3), oncology nurses (N = 5), and primarily care setting nurse practitioners (N = 27); and 12 survivor-advocates participated in this review and evaluation of the TSSCP-AABC (N = 54). The response rate for professionals was about 78%; the response for the advocates was about 92%. Each evaluator gave their informed consent prior to the inclusion in this study. All professional evaluators had at least 4 years experience serving diverse populations of cancer survivors with a focus on underserved and ethnic minority patients including AABCS.

Abstract ES5-3: Patient centered treatment summaries and survivorship care plans: enhancing clinical and linguistic responsiveness

Abstract To facilitate best practice in clinical surveillance and follow-up care for survivors, the Institute of Medicine, the Commission on Cancer, and the American Society of Clinical Oncology advise that cancer survivors be provided with personalized treatment summaries and Survivorship Care Plans (SCP). While efforts by leading organization (i.e., NCCN, ASCO and ACS) to define the SCP components, and efficacy and effectiveness are ongoing; we seem to agree that SCP implementation is patient centered. As we make strides in addressing quality oncology follow-up care and as we build the science and practice of SCP, we have the unique opportunity to attend to health equity and reduce health disparities at this very foundation of SCP research and implementation. Ethnic minorities comprise 36% of the US population and about 20% of the new cancer patient and survivor population, and their representations are increasing. Ethnic minority cancer survivors: 1) have more co-occurring illness and poor survival, 2) are at greater risk for aggressive and second cancers and metastases, 3) experience unfavorable survivorship outcomes. Yet, ethnic minorities are understudied in cancer survivorship research. Therefore, enhancing the clinical, cultural and linguistic responsiveness of the SCP is timely and necessary. Shared care medical delivery models combined with community and contextual frameworks that engage multisectoral stakeholders including oncology, specialty and primary care providers, researchers, administrators and advocates can help inform diversity inclusion and health equity considerations in SCP, specifically, and in quality patient care, in general. In this presentation, the gaps will be presented including: Information on late effects, phase of post-treatment window of vulnerability; randomized controlled or non-randomized trials; research considering ethnicity, age, gender, socioeconomic and language factors; implementation; access and cost concerns; integration of specialty (e.g. nutritional or genetic counseling) primary and integrative care Built on survivor input, consensus review and diverse stakeholder evaluation, the COH SCP templates were structured to attempt to enhance clinical, cultural and linguistic responsiveness by including: an emphasis on integrative, patient-centered care; a preamble to increase knowledge and usability; health history elements (e.g., chronic conditions, medications); health advisories (vaccines, nutrition); symptom management and self care; HRQOL (identifying sources of distress, spirituality); and local community and national resources. In summary as scientist-advocates, we anticipate the SCP will: 1) educate and activate survivors into their medical care and self care, and provide affirmation to survivors about their cancer survivorship experience. 2) Inform survivors about their treatment and potential negative treatment effects to increase adherence to surveillance for side effects, second cancers and metastasis, and follow-up care. 3) Assist in symptom management and self care. 4) Bring awareness and engagement in health advisories and quality of life enhancements. 5) Facilitate provider-provider interaction and patient-provider communication for enhanced integrative and quality care for all. Citation Format: Kimlin Tam Ashing. Patient centered treatment summaries and survivorship care plans: enhancing clinical and linguistic responsiveness [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr ES5-3.

Is there a role for survivorship care plans in advanced cancer?

The Institute of Medicine (2006) has recommended that cancer survivors completing treatment receive a survivorship care plan (SCP). The survivorship needs in advanced cancer have been overlooked and understudied. The potential role of SCPs for survivors with advanced or metastatic cancer is unknown and was explored in this study. We conducted two focus groups of survivors with advanced or metastatic cancer. Participants reviewed a sample JourneyForward™ SCP modified for advanced cancer. Sessions were audiotaped and transcribed; transcripts and field notes were evaluated using inductive content analysis. Sixteen survivors with metastatic cancer participated: 12 (75 %) were female, 15 (94 %) were white, and median age was 66 (range 55-80); 9 participants had breast cancer, 4 colon, 2 prostate, and 1 ovarian cancer. Participants believed that an SCP would be most helpful after initial diagnosis and treatment, but not as helpful once the cancer progressed. They thought a "cancer care plan" focusing solely on the current management would be better to concisely summarize the treatment plan and time frame for the next segment of care for those with advanced cancer. Most participants endorsed the need to have written information to reinforce verbal information received during medical visits since it was difficult to remember information provided. Participants expected their oncologist to assume primary responsibility for coordination of the care plan, but anticipated an important supportive role for primary care providers. To this end, they emphasized the need for better communication between providers. A cancer care plan developed by the oncologist, similar to an SCP but more focused on current management, may be more useful for survivors with advanced cancer. Exploring this topic in larger groups of more diverse survivors with advanced cancer will help to elucidate the details a written plan of care should contain, and how to promote effective coordination between oncology and primary care providers. There are many transitions of care along the cancer journey. A written plan of care, similar to an SCP, may be useful for survivors with advanced cancer.

Sexual health communication between cancer survivors and providers: how frequently does it occur and which providers are preferred?

Sexual health concerns in cancer survivors are often unaddressed by providers. Study objectives were to assess cancer survivors' reported rates of communication with oncology providers about sexual health, preference for such communication with their oncology or primary care providers (PCPs), and factors associated with these communication rates and preferences. Sixty-six patients attending a cancer survivorship clinic were asked how often their oncologist addressed and initiated discussion about sexual functioning and whether they wanted their oncologist or PCP to ask about their sexual health. We also assessed whether various sociodemographic characteristics and levels of depression, anxiety, and sexual satisfaction were associated with survivors' sexual health communication rates and preferences. 41% of patients wanted their oncologist to ask about sexual health and 58% of patients wanted their PCP to ask about sexual health. Over 90% of patients reported that their oncologist infrequently addressed sexual health concerns and that their oncologist was unlikely to initiate such discussions. Education level influenced whether patients wanted their oncologist to ask about sexual health. Age, education level, and insurance type influenced whether patients wanted their PCP to ask about sexual health. Levels of depression, anxiety, and sexual satisfaction were not associated with communication rates or preferences. Patients attending a survivorship clinic reported infrequent communication about sexual health with their oncology providers, despite wanting their providers to ask about sexual health concerns.

Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers.

Post-treatment follow-up represents a crucial aspect of quality cancer care; however, data are lacking regarding follow-up care experiences, perception of provider involvement in care, and perceived quality of care from diverse samples of long-term survivors diagnosed as adults. Questionnaires were mailed in 2005 to 2006 to breast, prostate, colorectal, endometrial, and ovarian cancer survivors (4 to 14 years after diagnosis), sampled from California SEER cancer registries. Most survivors (n = 1,490) reported recent follow-up care (68.7%), generally from oncology specialists only (47.4%) or shared between oncology and primary care providers (PCPs; 27.6%). Most survivors reported follow-up care advice (79.9%); fewer reported late-effects advice or receipt of a treatment summary (41.7% and 19.9%, respectively). Survivors who identified a PCP as their main follow-up care physician were as likely as those identifying an oncology specialist to rate their care as high quality (odds ratio [OR], 2.56; 95% CI, 0.98 to 6.74); however, survivors who could not identify a main follow-up care provider were less likely to report high-quality care (OR, 0.20; 95% CI, 0.08 to 0.50). Compared with follow-up care by an oncology specialist only, care by a PCP only was associated with a lower quality-of-care rating (OR, 0.34; 95% CI, 0.13 to 0.91), but there was no significant difference in quality rating by survivors when care was shared by an oncology specialist and PCP compared with an oncology specialist only. Long-term survivors commonly report follow-up care years after their diagnosis; however, many patients' follow-up lacks important components. Care is more likely to be rated as high quality when one main provider is identified and an oncology specialist is involved.

Conflicted Confidence: Academic Oncologists' Views on Multiplex Pharmacogenomic Testing

Conflicted Confidence: Academic Oncologists' Views on Multiplex Pharmacogenomic Testing

A Smartphone-Based Pain Management App for Adolescents With Cancer: Establishing System Requirements and a Pain Care Algorithm Based on Literature Review, Interviews, and Consensus

BackgroundPain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required.ObjectiveTo develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer.MethodsA systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app.ResultsThe systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness.ConclusionsThis study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.

Risk-Based Health Care, the Cancer Survivor, the Oncologist, and the Primary Care Physician

Cancer survivors face substantial risks for morbidity, reduced quality of life, and premature mortality related to the cancer itself and/or the interventions undertaken to control cancer. Risk-based care that involves a personalized systematic plan of periodic screening, surveillance, and prevention relevant to the cancer experience is recommended to address the comprehensive health needs of the growing population of cancer survivors. Risk-based care and coordination between oncology and primary care providers have been identified as important metrics of quality cancer survivorship care. Various models of survivorship care, treatment summaries, and survivorship care plans have been promoted as methods to facilitate communication among providers across care transitions and improve survivor access to quality survivorship care. However, research supporting the feasibility of implementing these practices and their effectiveness in enhancing health outcomes is limited. This article reviews key concepts underpinning clinical and research initiatives endeavoring to improve access to quality care among long-term survivors and summarizes results of intervention studies implementing these elements in transitioning survivors from oncology to primary care providers for long-term follow-up care.

PS1-4: The Nature of Social Support on Breast Cancer Patients' Treatment Decision-Making

Suepattra May1, Meghan Halley1, Katharine Rendle1, Nicole Ventre1, Dominick Frosch1 and Harold Luft1 1Palo Alto Medical Foundation for Healthcare, Research and Education