Healthcare provider perspectives on pediatric cancer survivorship care plans: a single institution pilot study.

PURPOSE: Survivorship care plans (SCPs) are used to facilitate communication between oncology and primary care providers (PCPs) after cancer treatment and to assist cancer survivors with healthcare decisions. We evaluated pediatric oncology providers' experiences creating and delivering SCPs. We also evaluated PCPs' opinions of SCPs. METHODS: Together, oncology nurses and oncologists created individualized SCPs for leukemia patients treated at a children's hospital in Utah, with nurses in charge of inputting the majority of SCP content. We surveyed providers after each SCP was completed. We also mailed SCPs to PCPs with a survey on SCP content and their knowledge and comfort level caring for cancer survivors. Descriptive statistics were used to summarize survey content. RESULTS: A total of 6 nurses and 8 oncologists created 21 SCPs. On average, nurses assisted with 3.5 SCPs and spent 209 min (range 100-600 min) on completing their sections of each SCP, whereas oncologists assisted with 2.6 SCPs and spent 47.4 min (range 15-120). For most SCPs, there was agreement that they should be shared with PCPs (nurse surveys 71.4%, oncologist surveys 100%). Of the 15 participating PCPs, only 28% felt prepared to manage long-term effects in pediatric cancer survivors. They agreed that the SCP would improve communication with their patient's oncologist (80%) and their knowledge for future care (100%). CONCLUSIONS: SCPs require substantial clinician time to create, but are seen as useful by PCPs. PCPs require specific guidelines and resources concerning ongoing care for pediatric cancer survivors.

Breast cancer polygenic risk scores in the clinical cancer genetic counseling setting: Current practices and impact on patient management.

Multivariate risk models are commonly used in clinical practice to estimate a woman's lifetime risk for breast cancer and assist in implementation of appropriate screening and risk reduction strategies. More recently, breast cancer polygenic risk scores (PRS) have been derived and integrated into these models to further improve risk estimation. While breast cancer PRS have been offered by two clinical diagnostic laboratories since 2017, little is known about the extent to which genetic counselors are ordering breast cancer PRS or incorporating the results into patient management. This study surveyed U.S. cancer genetic counselors from October 2019 to January 2020 to identify and understand their current practices with breast cancer PRS, to determine the impact of breast cancer PRS on patient management, and to anticipate future genetic counselor practices with breast cancer PRS. Fewer than half of respondents (43%, 51/120) had ordered breast cancer PRS and approximately one-third (35%, 16/46) reported that the PRS had changed their medical management recommendations. The majority of cancer genetic counselors had not ordered PRS, most commonly due to (a) lack of clinical guidelines (90%, 60/67), (b) insufficient evidence of clinical utility (88%, 59/67), and (c) lack of availability for patients of non-European ancestry (70%, 47/67). Of genetic counselors who had not ordered breast cancer PRS, only 10% (7/68) did not believe they would order PRS in the future. This is the first study to characterize genetic counselors' experiences with breast cancer PRS. Results from this study indicate that although breast cancer PRS have been clinically available for patients for several years, most cancer genetic counselors are not yet convinced they are ready to be incorporated into patient care.

Survivorship care plan experiences among childhood acute lymphoblastic leukemia patients and their families.

BACKGROUND: As survivorship care plan (SCP) use among childhood cancer survivors and their families has not been extensively researched, we report on their experiences with receiving an SCP after the completion of therapy. METHODS: Eligible patients had acute lymphoblastic leukemia, completed therapy, and had no evidence of disease at enrollment. Patients aged 7 or older (N = 13) and at least one parent (N = 23 for 20 total patients) were surveyed and completed assessments at enrollment (Time 1, T1), SCP delivery (Time 2, T2), and follow-up (Time 3, T3) (retention 90.9%). Surveys assessed the delivery process and SCP format. McNemar tests were used to assess change from T2-T3. RESULTS: Satisfaction with the SCP was generally high among parents. At T1 the majority of parents (69.6%) thought the SCP should be delivered after treatment but by T3 most preferred the plan to be delivered before the end of treatment (60.9%). While 95.7% of parents intended to share their child's SCP with another provider, family, or school at T2, only 60.9% had done so by T3 (P < 0.01). At both T2 and T3, 100% of parents agreed that the SCP would help make decisions about their child's future health care. Most patients at T3 (83.3%) felt they had learned something new from their SCP. CONCLUSIONS: Pediatric oncology patients and families feel SCPs are useful and will help them make decisions about health care in the future.

An Assessment to Inform Pediatric Cancer Provider Development and Delivery of Survivor Care Plans.

Current guidelines recommend all pediatric cancer survivors receive a survivor care plan (SCP) for optimal health management, yet clinical delivery of SCPs varies. We evaluated oncology providers' familiarity with and preferences for delivering SCPs to inform the implementation of a future SCP program at our institution. From November 2013 to April 2014, oncology providers from the Primary Children's Hospital in Salt Lake City, UT, completed a survey (n=41) and a 45-min focus group (n=18). Participants reported their familiarity with and training in SCP guidelines, opinions on SCPs, and barriers to delivering SCPs. As a secondary analysis, we examined differences in survey responses between physicians and nurses with Fisher's exact tests. Focus group transcripts and open-ended survey responses were content analyzed. Participants reported high familiarity with late effects of cancer treatment (87.8%) and follow-up care that cancer survivors should receive (82.5%). Few providers had delivered an SCP (oncologists 35.3% and nurses 5.0%; p=0.03). Barriers to providing SCPs included lack of knowledge (66.7%), SCP delivery is not expected in their clinic (53.9%), and no champion (48.7%). In qualitative comments, providers expressed that patient age variation complicated SCP delivery. Participants supported testing an SCP intervention program (95.1%) and felt this should be a team-based approach. Strategies for optimal delivery of SCPs are needed. Participants supported testing an SCP program to improve the quality of patient care. Team-based approaches, including nurses and physicians, that incorporate provider training on and support for SCP delivery are needed to improve pediatric cancer care.

A meta-analysis of body mass index of adolescent and adult survivors of pediatric acute lymphoblastic leukemia.

PURPOSE: We conducted a meta-analysis of existing studies to examine body mass index (BMI) of adolescent and adult survivors of pediatric acute lymphoblastic leukemia (ALL) compared to individuals without cancer. METHODS: Studies were identified and reviewed using specific inclusion criteria. The effect size was odds ratio (OR) of the prevalence of overweight/obese BMI (≥ 25 kg/m(2)) in ALL survivors versus comparison groups. Study data were coded and validated. Fixed-effects (FE) and random-effects (RE) estimates of the effect size were estimated. RESULTS: A total of 9 studies met our inclusion criteria. Survivors were more likely to be overweight/obese compared to comparison groups (FE OR = 1.12, 95% CI 1.06-1.18 and RE OR = 1.28, 95% CI 1.07-1.53). When limited to studies from North American samples, female survivors were overweight/obese more often than the comparison groups (FE OR = 1.30, 95% CI 1.19-1.43). CONCLUSIONS: Adolescent and adult survivors of pediatric ALL, especially female survivors, may be at a higher risk of being overweight/obese compared to individuals without cancer. However, few studies provided detailed information on patient and treatment factors (e.g., cranial radiation) that can impact BMI. Standardized reporting of study content is vital for providing robust information on the risk of developing late effects among cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: Adolescent and adult survivors of pediatric ALL require additional weight management resources such as targeted counseling for physical activity and dietician support both early in treatment and after the end of their therapy. Female survivors may need additional guidance to develop healthy eating practices and to participate in exercise programs.