SarahLena Panzer

Survivorship care planning after the Institute of Medicine recommendations: how are we faring?

IntroductionThis study evaluates the concordance of treatment summaries (TSs) and survivorship care plans (SCPs) delivered to breast cancer survivors within the LIVESTRONG™ Network of Survivorship Centers of Excellence with Institute of Medicine (IOM) recommendations and describes additional structure/process variables.MethodSeven NCI-designated comprehensive cancer centers and six community-based centers participated. TS/SCPs for 65 patients were rated against IOM recommendations using a study-derived checklist, and surveys were administered to better understand the structure and process of delivering TSs/SCPs.ResultsOn average, fewer than half of IOM content recommendations were met for TSs (M = 46%) and less than two thirds for SCPs (M = 59%). No sites achieved ≥75% overall concordance with IOM recommendations for TSs and only two of 13 met this criterion for SCPs. Content domain scores across sites varied widely, as did the number of sites addressing domain content with ≥75% concordance. Nonetheless, resources required for document preparation and delivery were substantial.DiscussionGaps in concordance with IOM recommendations exist even in dedicated survivorship centers. A substantial time burden was also noted. Further research is needed to determine which informational elements are essential, to develop and test strategies for improving efficiency and reach, and to determine if outcomes of survivorship care planning warrant the resources required in their preparation and delivery.Implications for survivorsTSs and SCPs have been recommended for all cancer survivors. Essential elements must be determined, approaches made more efficient, outcome improvements demonstrated, and cost-benefit analyses determined before survivors should expect widespread implementation of this recommendation for survivorship care.

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.

Abstract P1-09-23: Symptoms, desire for help, and quality of life among recent breast cancer survivors

Introduction: Advances in detection and treatment have led to improved survival among breast cancer (BC) patients and 89% can expect >5 year survival. Progress comes at a cost, however, and patients experience lasting effects from disease and treatment. It is not clear how these effects impact quality of life (QoL) achieved by BC survivors. We examined relationships between symptoms, desire for help, and QoL among recent BC survivors. Method: Eligibility included non-metastatic BC treated 1. Results: 171 primarily white (73%), middle aged (M=54.9 yrs), and Stage I (58%) BC survivors were recruited. Both Physical (M=48.1) and Mental (M=53.8) QoL were similar to national norms. Survivors reported an average of 12 symptoms, most commonly Fatigue (90%), Insomnia (75%), Hot Flashes (73%), and Joint Pain (70%). Most bothersome symptoms included Joint Pain (M=2.9), Decreased Sexual Drive (M=2.8), Hot Flashes (M=2.8), and Vaginal Dryness (M=2.7). Participants desired help with few symptoms (M=2.3), primarily Weight Gain (50%), Joint Pain (45%), and Numbness in Hands/Feet (44%). Both Physical and Mental QoL were negatively associated with number of symptoms experienced (r = -.46 and -.41, respectively) and number of symptoms for which help was desired (r = -.16 and -.41, respectively). Conclusion: Symptoms are common among recent breast cancer survivors and negatively impact Physical and Mental QoL. Desire for help is less common, though similarly associated with impairment in QoL. Assessing QoL in isolation from symptom burden may miss important areas for which remediation is possible and could result in improved QoL. Patient education regarding the potential for and value of symptom reduction may be needed in BC survivors. Citation Format: Steven C Palmer, SarahLena L Panzer, Karen Glanz, Marilyn M Schapira, Angela M DeMichele, Linda A Jacobs. Symptoms, desire for help, and quality of life among recent breast cancer survivors [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 P1-09-23.

Abstract P3-08-02: Breast cancer survivors’ outcomes and satisfaction following delivery of a survivorship care plan: Results of a multicenter trial

Introduction: Survivorship care plans (SCPs) have been suggested as a solution to the fragmentation of care and suboptimal outcomes experienced by the more than 13 million cancer survivors in the US. Provider and patient acceptance of SCPs is generally high, but trials to date have examined outcomes such as cancer-related distress rather than constructs more directly related to the purpose of SCPs, such as improving coordination of care, knowledge about survivorship issues, and perceived usefulness by patients. Moreover, little is known about processes by which SCPs are developed and delivered in practice – who is involved and the level of resources needed for implementation. This pilot study used a quasi-experimental, pre-test/post-test design to examine the process of delivering standardized SCPs and the outcomes achieved by post-treatment breast cancer survivors at seven cancer centers affiliated with the LIVE STRONG ™ Survivorship Centers of Excellence Network. Method: Outcomes were assessed prior to SCP delivery and 3 months following and included survivors’ use of and satisfaction with SCPs, perceived knowledge about survivorship care and potential late effects, and survivors’ assessment of the quality and coordination of survivorship care. Process variables included type of provider delivering the SCP and time required to complete and deliver the SCP. Results: 139 breast cancer survivors completed baseline and follow-up measures and received a comprehensive, standardized SCP at a survivorship visit (Age M = 53.9 years, 3.4 years post-diagnosis, 90.6% Caucasian). Satisfaction with the SCP was high, with 90% of participants being at least ‘satisfied’ and 56% being ‘very’ or ‘extremely satisfied’. Perceived knowledge about survivorship care improved following SCP delivery (p Discussion: This is the first known study to demonstrate significant improvements in perceived knowledge regarding and perceived quality of survivorship care following receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and most frequently reported using SCPs in making decisions regarding behavioral changes. Results warrant further consideration in a randomized controlled trial, and approaches that maximize efficiency are needed given the time burden of providers to provide an SCP. SCPs have been recommended for all cancer survivors and these data provide preliminary support for this recommendation. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-02.

Abstract P3-08-07: Survivorship care planning – When is intervention most effective?

Introduction: Cancer survivors experience late and long-term effects, though post-treatment follow-up is generally focused on monitoring for disease recurrence. Survivors may hesitate to volunteer symptom concerns for fear of burdening their providers with ‘insignificant complaints.’ Survivorship care plans (SCPs) have been recommended by the IOM and mandated by the American College of Surgeons as a means of improving outcomes and enhancing communication between survivors and providers. To date, however, little research has evaluated the effect of SCPs on patient-reported outcomes, and less has examined the optimal timing of SCP interventions. This study examined symptom burden, quality of life (QoL), health concerns, use of SCP materials and differences by time since diagnosis in a pre-post quasi-experimental design. Method: 139 breast cancer survivors completed assessments prior to and 3 months following a structured SCP visit at one of seven LIVE STRONG™ affiliated survivorship programs. Measures at both time points included global and individual symptom burden, QoL (SF-12), cancer-specific and general health worry, personal survivorship concerns, and family/genetic Survivorship Concerns. Patients also reported use of SCP materials for informational, decisional, and communication Support at follow-up. Subjects were grouped according to time since diagnosis into two categories: near term (≤ 24 months, n = 84), long term (> 24 Month, n = 55) survivors. Results: Global symptom burden decreased following SCP intervention (p < .001). Participants reported decreased pain (p = .001), fatigue (p < .001), disturbance from hot flashes (p = .02), emotional concern (p = .02), and numbness/neuropathy (p = .006), and a trend toward decreased cognitive disturbance (p = .09). Near term survivors reported marginally greater decrease in global symptom burden relative to long term survivors (p = .08), and in the specific areas of cognitive difficulties (p = .05), fatigue (p = .006), and emotional concerns (p = .10). Although there were no differences over time in physical functioning on the SF-12, near term survivors reported worse mental health than long term survivors (p = .008). Across groups, cancer-specific worry, general health worry, personal survivorship concerns, and family/genetics concerns did not change over time. However, near term survivors reported more cancer-specific worry (p = .03) and marginally greater family/genetics concern than long term subjects (p = .10). Near term survivors were also more likely to use their SCP documents for informational (p = .02) and decisional (p = .08) support following their SCP visit. Discussion: Although limited by a quasi-experimental design, results suggest that SCPs may have a beneficial effect on symptom burden generally, with physical symptoms of pain, fatigue and neuropathy most responsive to care.. Much of the benefit appears to accrue to near term survivors. Moreover, near term survivors report more concerns relative to long term survivors, and are more likely to use SCP materials following visits. If these findings are replicated in better controlled studies, survivorship care will provide greater benefit in the first two years after completion of treatment. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-07.

P-143: Family members’ perceptions of palliative care service needs of advanced dementia patients

declining element associated with caregiver morbidity (Whelan 2001; Burton, Zdaniu, Schulz, Jackson, Hirsch). “Providing daily care to demented family members is a physically and emotionally exhausting task. Among the consequences is depression which is alarmingly common among these caregivers and is often severe” (Ferris 2002). Objective: To examine depression knowledge, attitude and help seeking behaviors among older African Americans caring for their loved ones with Alzheimer’s disease. Methods: With a representative sample, we developed a 12-item qualitative survey from a focus group structured with open-ended questions relative to depression and caregiving. The survey was self-administered during a 2005 “Live Healthy Georgia” health fair in a multi-purpose senior center. Results: Thirty-three African Americans aged 50-90 responded to this survey, of which twenty-five were caregivers. Of the twenty-five, fourteen were caring for a loved one with Alzheimer’s disease and eleven were non-AD caregivers. Of the total sample population, 59% indicated that African American AD caregivers had no understanding of depression. Additionally, 69% of all caregivers indicated African American AD caregivers did not know how to seek help if they were depressed. Among fourteen African American AD caregivers, 69% agreed in strong association with age (Somers’ d 0.583, p 0.048). Additionally, 58% of non-AD caregivers answered that African American AD caregivers did not know how to seek help if they were depressed which was associated with age (lambda 1.0, p 0.003). Of all respondents, 87% indicated that African American AD caregivers grieve during the care of their loved one. There was a significant difference between the responses of AD and non-AD caregivers to this question (t-value 2.309; df 13; p 0.038). Of AD caregivers, 71% indicated African American AD caregivers grieve caring for their loved one; 100% of non-AD caregivers agreed. Conclusions: We may need further research in depression counseling intervention strategies among AD caregivers during and after the caring experience (Mittelman 2004). In 1999 the Surgeon General of the United States, David Satcher, MD, issued a report on mental health. His conclusions are our conclusions: “mental illnesses such as depression are real; treatment works; get help” (Satcher 2001).