Patient-centered development of a bladder cancer survivorship care plan.

PURPOSE: This study aimed to develop a patient-centered survivorship care plan (SCP) for US military Veteran bladder cancer (BC) survivors in accordance with the National Academy of Medicine recommendation that survivors receive an SCP at treatment completion. BC, which differentially impacts older men, is a costly and highly recurrent cancer associated with invasive procedures and long-term surveillance. Veteran BC survivors may face challenges navigating the patient-to-survivor transition due to their age and comorbidities. METHODS: We conducted 20 one-on-one qualitative interviews and 2 focus groups with Veteran BC survivors to understand their preferences for information and support to inform SCP development. Data were analyzed using rapid analysis. RESULTS: Participants voiced concerns about BC's impact on their psychosocial functioning and quality of life. They suggested information on BC recurrences, recommended surveillance schedules, long-term side effects and healthy living, and how and when to seek help if a medical problem arises should be included on the SCP to help manage expectations and access key resources during survivorship. Although participants had varying needs, many recommended including information on supportive resources (e.g., support groups, peer support programs) to manage cancer-related anxiety. Participants also suggested including Veteran-centered information (e.g., Veterans' BC risk factors). CONCLUSION: We developed an SCP to help Veteran BC survivors navigate the transition from patient to survivor. Adapting an SCP to address specific needs of the Veteran population was an important step in supporting Veteran BC survivors. Future research should evaluate the potential effectiveness of this SCP at improving Veterans' health outcomes and healthcare experiences.

Supporting safe swallowing of care home residents with dysphagia: How does the care delivered compare with guidance from speech and language therapists?

INTRODUCTION: Dysphagia affects up to 70% of care home residents, increasing morbidity and hospital admissions. Speech and language therapists make recommendations to support safe nutrition but have limited capacity to offer ongoing guidance. This study aimed to understand if recommendations made to support safe and effective care are implemented and how these relate to the actual care delivered. METHODS: Eleven mealtimes with residents with dysphagia were observed during 2020 using a tool capturing 12 elements of expected practice. Staff actions during mealtimes were compared with adherence to residents' care plans and speech and language therapist recommendations. RESULTS: Written recommendations predominantly focused on food and fluid modification. Observations (n = 66) revealed food texture, posture, and alertness were adhered to on 90% of occasions, but alternating food and drink, prompting and ensuring swallow completed adherence was less than 60%. Thickened fluids frequently did not align with required International Dysphagia Diet Standardisation Initiative levels. Nutrition care provided in the dining room was less safe due to a lack of designated supervision. CONCLUSION: Care homes need to be supported to establish a safe swallowing culture to improve residents' safety and care experience. WHAT THIS PAPER ADDS: What is already known on this subject? Dysphagia is associated with considerable morbidity and mortality and has been identified as an independent risk factor for mortality in nursing home residents. There is evidence that compensatory swallowing strategies, safe feeding advice and dietary modifications can reduce the risk of aspiration pneumonia. Care for nursing home residents at mealtimes is often task-centred and delegated to those with limited training and who lack knowledge of useful strategies to support the nutrition and hydration needs of residents with dysphagia. What this study adds? Written advice from speech and language therapists on safe nutrition and hydration for residents with dysphagia is focused mainly on food and fluid modification. Nurses and healthcare assistants have limited understanding of International Dysphagia Diet Standardisation Initiative levels or safe swallowing strategies and recommended practices to support safe nutrition care for residents with dysphagia are inconsistently applied especially when residents are eating in dining areas. Care homes are not aware of Royal College of Speech and Language Therapists guidance on how safe nutrition care of residents with dysphagia should be supported. What are the clinical implications of this work? Care homes need to prioritise a safe swallowing culture that ensures that residents with swallowing difficulties are assisted to eat and drink in a way that enhances their mealtime experience and minimises adverse events that may result in hospital admission. Speech and language therapists could play an important role in training and supporting care home staff to understand and use safe swallowing strategies with residents with dysphagia. The Royal College of Speech and Language Therapists could provide more assistance to care homes to support and guide them in how to implement safe feeding routines. Care home staff have limited knowledge about how to implement safe feeding routines and need more guidance from speech and language specialists on how they can support residents with dysphagia to eat safely. Creating a safe swallowing culture within care homes could help to improve nutrition care and enhance patient safety.

Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors' quality of life, health behaviors, and access to health services.

PURPOSE: The 2016-2020 Utah Comprehensive Cancer Prevention and Control Plan prioritized strategies to address cancer survivorship experiences. In this paper we present estimates for nine indicators evaluating these priorities, trends over time, and assess disparities in survivorship experiences across demographic subgroups. METHODS: We surveyed a representative sample of Utah cancer survivors diagnosed between 2012 and 2019 with any reportable cancer diagnosis. We calculated weighted percentages and 95% confidence intervals (CI) for each indicator. We assessed change over time using a test for trend across survey years in a logistic regression model and used Rao-Scott F-adjusted chi-square tests to test the association between demographic characteristics and each survivorship indicator. RESULTS: Most of the 1,793 respondents (93.5%) reported their pain was under control, 85.7% rated their overall health as good, very good, or excellent, but 46.5% experienced physical, mental, or emotional limitations. Only 1.7% of survivors aged 75 or older were current smokers, compared to 5.8% of 65-74-year-olds and 7.9% of survivors aged 55-74 (p < 0.006). No regular physical activity was reported by 20.6% and varied by survivor age and education level. The proportion who received a survivorship care plan increased from 34.6% in 2018 to 43.0% in 2021 (p = 0.025). However, survivors under age 55 were significantly less likely to receive a care plan than older survivors. CONCLUSION: This representative survey of cancer survivors fills a gap in understanding of the cancer survivorship experience in Utah. Results can be used to evaluate and plan additional interventions to improve survivorship quality of life.

Readmissions to hospital following a decision to eat and drink with acknowledged risk.

People with a dysphagia may eat and drink with acknowledged risks (EDAR). The FORWARD care bundle (Feeding via the Oral Route With Acknowledged Risk of Deterioration) is used at our hospital to support patients who are EDAR. This two-year retrospective study of patients supported by FORWARD aimed to determine incidence of EDAR-related readmissions and effects of discharge location and documented preferred place of care in advance care plans. Of 316 patients supported by FORWARD, 200 were discharged alive. 63% (n=126) were not readmitted within six months. Of 74 patients readmitted, 49% had an EDAR-related readmission. Significantly fewer patients wishing to remain at home had EDAR-related readmissions (7%, n=4) than those without a documented preferred place of care (23%, n=30, p<0.01), suggesting advance care plans are effective. Significantly more (23%, n=29) patients discharged to private homes had EDAR-related readmissions than those in nursing/care homes (10%, n=6, p<0.05), which could suggest residential care provides more support.

Early experiences of telehealth monitoring for patients with COPD and implementation of person-centred care plans.

Aims: The authors share their early experiences of developing and implementing a telehealth service for patients with chronic obstructive pulmonary disease (COPD), through a collaborative approach. The article will explore the process of implementing telehealth service in a local care community team, identifying opportunities for improving care delivery and person-centred care. Discussion: The initial feedback and thoughts of both patients and healthcare professionals were obtained. Such feedback included patient's health insights, which helped improve risk assessment and personalised parameter settings. Conclusions: To-date, there has been a lack of robust evidence for the clinical benefits of telehealth. However, the feedback from staff and patients using telehealth was positive in several areas. Person-centred care plans also helped provide greater insight into patient's health goals, thereby streamlining care.

Colorectal cancer survivorship care plans: Variations in documentation and posttreatment surveillance recommendations.

BACKGROUND: Survivorship care plans (SCP) should outline pertinent information about cancer treatment and follow-up. METHODS: We descriptively analyzed the content of 74 colorectal cancer SCPs completed as part of a randomized, controlled trial of SCPs at an academic and community cancer center. Surveillance recommendations were compared with American Cancer Society, American Society of Clinical Oncology and National Comprehensive Cancer Network guidelines. RESULTS: SCP information provided in >80% of the plans included participant age, cancer diagnosis, details, and side-effects of treatment (surgery, chemotherapy, radiation) and health promotion recommendations. SCP content documented less frequently included predisposing conditions, genetic counseling/testing information and staging. Posttreatment surveillance recommendations were documented in >90% SCPs. For stage 2-3 cancer, rates of guideline concordant recommendations were 100% for colonoscopy surveillance (Year 1 only), 87% for imaging surveillance, 65% for carcinoembryonic antigen surveillance, and 33% for follow-up visits. Excluding colonoscopy, >15 unique recommendations were listed for each modality across stages and sites, with more variation at the academic site. CONCLUSIONS: SCPs consistently recorded information about cancer diagnosis and treatment but omitted critical information about cancer-specific details denoting risk. Surveillance recommendations varied considerably between cancer centers. Future work to improve the consistency of surveillance recommendations documented in SCPs may be needed.

Human papilloma virus vaccination and cervical cancer screening coverage in managed care plans - United States, 2018.

Human papilloma virus (HPV) vaccination for adolescents aged 11-12 years and cervical cancer screening for women aged 21-65 years are recommended to help prevent cervical cancer. The purpose of this study was to describe 2018 National Committee for Quality Assurance (NCQA) Healthcare Effectiveness Data and Information Set (HEDIS®) data for the United States on HPV vaccination and cervical cancer screening from 275 commercial preferred provider organizations (PPOs), 219 commercial health maintenance organizations (HMOs), and 204 Medicaid HMOs. The Centers for Disease Control and Prevention and NCQA analyzed the data in 2021. The HEDIS® measure for HPV vaccination was the percentage of male and female adolescents aged 13 years who completed HPV immunization (2- or 3-dose series) on or before their 13th birthday. The measure for cervical cancer screening was the percentage of women screened either with cervical cytology within the last 3 years for women aged 21-64 years or with cervical cytology/HPV co-testing within the last 5 years for women aged 30-64 years. Nationally, the mean rate for HPV vaccination in 2018 was 37.8% in Medicaid HMOs, 30.3% in commercial HMOs, and 24.9% in commercial PPOs. The mean rate for cervical cancer screening was 75.9% in commercial HMOs, 72.6% in commercial PPOs, and 60.3% among Medicaid HMOs. Medicaid HMOs reported higher HPV vaccination rates but lower cervical cancer screening rates than commercial plans. These differences raise questions about explanatory factors and how to improve prevention performance by plan category.

Evaluation of survivorship care plans in patients attending the Sydney Cancer Survivorship Centre.

PURPOSE: The transitioning of cancer survivors from active treatment to surveillance care has been described as uncoordinated, with lack of communication between healthcare professionals. Survivorship care plans (SCP) are recommended to bridge this transitioning period and help improve coordination of care. SCP contain individualized information about a survivor's cancer diagnosis, treatment, and recommendations for managing treatment-related side effects and improving lifestyle risk factors for cancer recurrence and chronic disease. The aims of the study were to assess the delivery, usefulness, and compliance with SCP of survivors attending a multidisciplinary survivorship clinic and to determine patient suggestions regarding how to improve SCP. METHODS: A total of 110 survivors were interviewed in-person or by phone regarding their SCP following a script with formalized questions. Data were analyzed quantitatively using descriptive statistics. RESULTS: Overall, 65% of participants (72/110) acknowledged having received a SCP and 86% found them useful. Only 11% of survivors (8/72) showed their SCP to other health professionals and about half (33/72) showed it to family/friends. Ninety percent of survivors (65/72) reported following at least one recommendation in their SCP. CONCLUSION: Survivors found SCP helpful but did not share them with other healthcare providers, which questions their usefulness in coordinating care. There were challenges with SCP delivery. Survivors reported they were compliant with SCP lifestyle recommendations. Further research is required to address the utility of SCP to other stakeholders, such as general practitioners, to determine whether they receive the SCP, if they find them helpful, and their expectations regarding SCP.

Barriers and facilitators to the use of survivorship care plans by hematopoietic stem cell transplant survivors and clinicians.

PURPOSE: Survivors of hematopoietic stem cell transplants (HSCT) have complex care needs for the remainder of their lives, known as the survivorship period. Survivorship care plans (SCPs) have been proposed to improve care coordination and ultimately survivorship outcomes. We explored the barriers and facilitators of SCP use among HSCT survivors and their clinicians in order to develop more useful SCPs for the HSCT context. METHODS: Analogous surveys regarding perceived barriers to and facilitators of SCP use based on a sample SCP for a female allogenic HSCT survivor were administered to HSCT survivors and non-transplant oncology and primary care clinicians. RESULTS: Twenty-seven HSCT survivors and 18 clinicians completed the survey. The main barriers to SCP use were lack of awareness of SCP existence, uncertainty regarding where to find SCP, unclear roles and responsibilities among healthcare teams, length of SCP, and difficultly understanding SCPs. The facilitators of SCP use were increased understanding of survivorship care needs, clarified roles and responsibilities of survivors and clinicians, SCPs that are readily available and searchable in electronic health record, increased awareness of SCP existence and provision to all survivors, and if the SCP is survivor-specific and up-to-date. CONCLUSIONS: Much of the work regarding SCPs has looked at barriers to creation and provision; however, our study examines factors influencing use of SCPs. By determining the barriers and facilitators surrounding SCP use for HSCT survivors and their clinicians, we can create SCP templates and clinical workflows to optimize SCP use, ideally leading to better outcomes for HSCT survivors.

Results of Engineering, Primary Care, Oncology Collaborative Regarding a Survey of Primary Care on a Re-Engineered Survivorship Care Plan.

Survivorship care plans (SCPs) may facilitate cancer survivorship care shared between oncologists and primary care, particularly for patients more likely to receive care across healthcare systems such as rural patients. However, limited research has addressed primary care clinicians' information or workflow needs with regard to SCPs. This study's objective was to assess primary care clinicians' perceived usefulness with a re-engineered SCP previously developed by applying engineering approaches and informed by primary care preferences. An emailed survey of primary care clinicians assessed perceived usefulness with the re-engineered SCP. Clinicians were recruited across the USA from primary care practice-based research networks (PBRNs) with high concentrations of rural practices. Over 90% of respondents (n = 111) agreed that (1) the re-engineered SCP was useful (n = 95) and (2) they would want to receive a similar SCP (n = 93). The majority demonstrated high agreement regarding the SCP's relevance, understandability, content, and ability to help provide better survivorship care. Perceived usefulness was consistent between rural and non-rural clinicians. Suggested improvements involved decreased length, addition of a bulleted list, and electronic health record integration. Results indicate that the majority of primary care clinicians perceive the re-engineered SCP as useful. However, primary care clinicians indicated continued barriers despite end-user specific alterations. Future research should investigate additional strategies to support primary care survivorship-related workload, provide essential SCP content, and improve survivorship care delivery.

Re-engineering Survivorship Care Plans to Support Primary Care Needs and Workflow: Results From an Engineering, Primary Care and Oncology Collaborative for Survivorship Health (EPOCH).

Maintaining the health of survivors requires communication, collaboration and care coordination between oncology and primary care. Primary care clinicians have been acknowledged as important recipients of survivorship care plans (SCPs); however, current SCP templates have not been evaluated for usefulness in the primary care context. We surveyed and interviewed primary care clinicians from a rural research network regarding SCP content, format and layout (phase 1), and potential use and clinical workflows around SCPs (phase 2). Based on these data, an existing SCP template was iteratively redesigned to better support survivorship care in the primary care setting. A total of 13 clinicians (9 MDs, 4 APPs) participated. Interviewees advocated for maintaining a single SCP document shared by survivors and clinicians. Changes to the SCP template included prioritizing follow-up over summary of treatment and removing or down-playing screening recommendations not impacted by cancer or cancer treatment. The re-engineered SCP was regarded as highly relevant for survivors, but clinicians noted the significant effort to "disassemble" SCPs in order to enter the information into on the receiving health record. Primary care clinicians value the information in SCPs but had important recommendations regarding content, layout, and format. Additionally, a significant effort appears to be required by recipients in order to extract SCP information for future use.

Home health aide perceived information needs for dementia-specific care plans.

Home health aides (HHAs) are a vital workforce essential to meet the complex care needs of the persons living with dementia (PLWD) who remain at home. Care plans for PLWD in the home healthcare setting should incorporate HHAs perspectives. We sought to understand HHAs' perspectives about their information needs in caring for PLWD, from June to August 2020, semi-structured interviews telephone interviews (n = 25) with English and Spanish-speaking HHAs with limited English proficiency in the New York metropolitan area. Interviews were audio-recorded, transcribed verbatim and transcripts were analyzed using conventional content analysis. Four key themes emerged reflective of information needs of HHAs caring for PLWD: (1) ambiguities of scope of HHA tasks related to medication management; (2) clinical information needs of HHAs; (3) dementia-related concerns; and (4) going above and beyond. Findings from this research can guide efforts to develop dementia-specific care plans, and training to support the HHA workforce caring for the growing population of PLWD.

What are survivorship care plans failing to tell men after prostate cancer treatment?

BACKGROUND: Survivorship care plans contain important information for patients and primary care physicians regarding appropriate care for cancer survivors after treatment. We describe the completeness of prostate cancer survivorship care plans and evaluate the concordance of follow-up recommendations with guidelines. METHODS: We analyzed 119 prostate cancer survivorship care plans from one academic and one community cancer center, abstracting demographics, cancer/treatment details, and follow-up recommendations. Follow-up recommendations were compared with the American Cancer Society (ACS), American Society of Clinical Oncology (ASCO), and National Comprehensive Cancer Network (NCCN) guidelines. RESULTS: Content in >90% of plans included cancer TNM stage; prostate-specific antigen (PSA) at diagnosis; radiation treatment details (98% of men received radiation); and PSA monitoring recommendations. Potential treatment-specific side effects were listed for 82% of men who had surgery, 86% who received androgen deprivation therapy (ADT), and 97% who underwent radiation. The presence of posttreatment symptoms was noted in 71% of plans. Regarding surveillance follow-up, all guidelines recommend an annual digital rectal exam (DRE). No plans specified DRE. However, all 71 plans at the community site recommended at least annual follow-up visits with urology, radiation oncology, and primary care. Only 2/48 plans at the academic site specified follow-up visits. All guidelines recommend PSA testing every 6-12 months for 5 years, then annually. For the first 5 years, 90% of plans were guideline-concordant, 8% suggested oversurveillance, and 2% were incomplete. In men receiving ADT, ACS and ASCO recommend bone density imaging and NCCN recommends testosterone levels. Of 77 men on ADT, 1% were recommended bone density imaging and 16% testosterone level testing. CONCLUSIONS: While care plan content is more complete for demographic and treatment summary information, both sites had gaps in reporting posttreatment symptoms and ADT-related testing recommendations. These findings highlight the need to improve the quality of information in care plans, which are important in communicating appropriate follow-up recommendations to patients and primary care physicians.

Exploring and Overcoming the Challenges Primary Care Practices Face with Care Management of High-Risk Patients in CPC+: a Mixed-Methods Study.

BACKGROUND: Longitudinal care management (LCM) for high-risk patients is a cornerstone of primary care models aiming to improve quality and reduce costs. OBJECTIVE: Describe the extent to which LCM was implemented in the second year of Comprehensive Primary Care Plus (CPC+), and barriers to and facilitators of implementation. DESIGN: Mixed-methods. PARTICIPANTS: Quantitative: 2715 practices participating in CPC+ in 2018. Qualitative: Interviews with practitioners and staff in 23 representative CPC+ practices. MAIN MEASURES: Across all CPC+ practices, we report median percentages of empaneled patients placed in the highest-risk tiers and, of those, the median percentage receiving LCM. Across 23 CPC+ practices, we report qualitative findings on LCM implementation. KEY RESULTS: While practices reported benefits of LCM, a small proportion of patients received LCM. Practices placed 2.4% (median) of patients in the highest-risk tier; of these, 30% (median) received LCM. Practices placed 10% (median) of patients in the second-highest-risk tier; of these, 7% (median) received LCM. Interviews revealed LCM uptake across tiers was low because of insufficient care manager staffing. Other challenges included lack of practitioner buy-in to using risk stratification to identify high-risk patients, patients' reluctance to engage in LCM or change behaviors, and limited health information technology functionality for developing, maintaining, and accessing high-risk patients' care plans. Facilitators included embedding care managers within practices and electronic health record functionalities that support LCM. CONCLUSIONS: Despite substantial financial and other supports, and practices' perceived benefits of LCM, insufficient care manager staffing and other barriers have limited its potential in CPC+ to date. To expand LCM's reach, practices need additional care managers, training to overcome barriers to patient engagement, better identification of patients who might benefit from LCM, improved information technology tools for risk stratification and care plans, and more practitioner buy-in to risk stratification.

Translating Evidence into Practice: ACOs' Use of Care Plans for Patients with Complex Health Needs.

BACKGROUND: Care plans are an evidence-based strategy, encouraged by the Centers for Medicare and Medicaid Services, and are used to manage the care of patients with complex health needs that have been shown to lead to lower hospital costs and improved patient outcomes. Providers participating in payment reform, such as accountable care organizations, may be more likely to adopt care plans to manage complex patients. OBJECTIVE: To understand how Medicare accountable care organizations (ACOs) use care plans to manage patients with complex clinical needs. DESIGN: A qualitative study using semi-structured interviews with Medicare ACOs. PARTICIPANTS: Thirty-nine interviews were conducted across 18 Medicare ACOs with executive-level leaders and associated clinical and managerial staff. APPROACH: Development, structure, use, and management of care plans for complex patients at Medicare ACOs. KEY RESULTS: Most (11) of the interviewed ACOs reported using care plans to manage care of complex patients. All care plans include information about patient history, current medical needs, and future care plans. Beyond the core elements, care plans included elements based on the ACO's planned use and level of staff and patient engagement with care planning. Most care plans were developed and maintained by care management (not clinical) staff. CONCLUSIONS: ACOs are using care plans for patients with complex needs, but their use of care plans does not always meet the best practices. In many cases, ACO usage of care plans does not align with prescribed best practices: ACOs are adapting use of care plans to better fit the needs of patients and providers.

Catalyzing Navigation for Breast Cancer Survivorship (CaNBCS) in Safety-Net Settings: A Mixed Methods Study.

PURPOSE: The current number of breast cancer survivors (BCS) in the United States is approximately 3.8 million, and this number is further expected to increase with improvement in treatments. Survivorship care plans (SCPs) are patient-centered tools that are designed to meet cancer survivors' informational needs about their treatment history, recommended health care, and health maintenance. However, the data on SCP benefits remain uncertain, especially in low-income and racial and ethnic minority cancer survivors. Patient navigation is an effective intervention to improve patient adherence and experience of interdisciplinary breast cancer treatment. OBJECTIVES: This study sought to understand the role of lay patient navigators (LPN) in survivorship care planning for BCS in safety-net settings. METHODS: This study is a mixed methods pilot randomized clinical trial to understand the role of patient navigation in cancer survivorship care planning in a public hospital. We invited BCS who had completed active breast cancer treatment within 5 years. LPNs discussed survivorship care planning and survivorship care-related issues with BCS in the intervention arm over a 6-month intervention period and accompanied patients to their primary care appointment. LPNs also encouraged survivors to discuss health care issues with oncology and primary care providers. The primary objective was to assess BCS' health-related quality of life (HRQOL). The secondary objectives were self-efficacy and implementation. We assessed implementation with 45-60-min semi-structured interviews with 15 BCS recruited from the intervention arm and 60-min focus groups with the oncologists and separately with LPNs. RESULTS: We enrolled 40 patients, 20 randomized to usual care and 20 randomized to LPN navigation. We did not find a statistically significant difference between the two arms in HRQOL. There was also no difference in self-efficacy between the two arms. Qualitative analysis identified implementation barriers to intervention that may have contributed to less effective intervention. IMPLICATIONS FOR CANCER SURVIVORS: Future survivorship care planning interventions need to consider: Cancer survivors' needs and preferences, the need for dedicated resources, and the role of electronic health records in survivorship care plan delivery.

Dissemination of cancer survivorship care plans: who is being left out?

OBJECTIVES: The Institute of Medicine (IOM) and the American College of Surgeons Commission on Cancer (CoC) recommend a clear and effectively explained comprehensive survivorship care plan (SCP) be given to all cancer survivors. The objective of this study is to understand the relationship between social determinants of health (SDOH) and self-reported receipt of SCP by cancer survivors in the USA. METHODS: We analyzed an adult population of cancer survivors in the 2016 Behavioral Risk Factor Surveillance System's (BRFSS) Survivorship modules. Weighted multivariable logistic regression was used to analyze the association of SDOH and reported receipt of SCP. RESULTS: There were 7061 cancer patients eligible for an SCP. The probability of reporting receipt of SCP decreased with lower educational achievement (high school/some college: AOR = 0.82, 95% CI: 0.70-0.97, p = 0.02; < high school: AOR = 0.68, 95% CI: 0.47-0.97, p = 0.03) compared to those with at least one college degree. Additionally, being widowed/divorced/separated (widowed/divorced/separated: AOR = 0.72, 95% CI: 0.61-0.86, p < 0.01 vs. married/cohabiting) and uninsured (uninsured: AOR = 0.52, 95% CI: 0.0.34-0.80, p < 0.01 vs. insured) increased the odds of not receiving an SCP. Younger patients were more likely to receive an SCP than those over 65 (18-24 years: AOR = 6.62, 95% CI: 1.87-24.49, p < 0.01 vs. 65+ years). CONCLUSION: Among cancer survivors, SDOH such as low educational achievement, widowed/divorced/separated marital status, and being uninsured were associated with a lower likelihood of receiving an SCP. Future studies should evaluate how omission of SCP in these patients influences the quality of care during the transition from oncologists to primary care.

Cancer patient perspectives on survivorship goals from the Smart Patients online community.

BACKGROUND: Cancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers. PATIENTS AND METHODS: Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. RESULTS: Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. CONCLUSION: Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

Primary care physician's confidence and coordination regarding the survivorship care for older breast cancer survivors.

PURPOSE: To examine primary care physician's (PCPs) internal (confidence, training) and external (communication, receipt of survivorship care plans (SCPs)) regarding their provision of survivorship care to older breast cancer survivors METHOD: A web-based questionnaire was completed individually by PCPs about their training and areas of survivorship they address under their care. A subset of survey participants was interviewed about survivorship care for older breast cancer survivors, care coordination, and areas of improvement regarding SCPs. RESULTS: PCPs (n = 29) had an average 13.5 years in family practice. Forty-five percent surveyed as "somewhat confident" or "not confident" evaluating and managing the late effects of cancer treatment, and 25% surveyed as "somewhat confident" or "not confident" addressing the chronic comorbidities of older breast cancer survivors. More than half of PCPs surveyed that they reach out to their patients' oncologist "a little" or "none of the time" and that they receive SCPs "a little" or "none of the time." Semi-structured interviews also indicated that many PCPs did not receive a SCP from their patients' oncologists and that communication between the two providers regarding survivorship care was poor. CONCLUSION: Participants indicated that PCP confidence in providing survivorship care is lacking and that lack of training, infrequent communication with oncologists, and underutilization of SCPs may contribute to this lack of confidence. These findings provide insight into the possible need for a well-defined shared care model, which has been encouraged but not always a routine part of survivorship care in various practice settings.

Developing a survivorship care plan (SCP) delivery process for patients and primary care providers serving poor, rural, and minority patients with cancer.

BACKGROUND: Survivorship care plans (SCPs) summarize patients' treatment and act as an education and communication tool between oncologists and primary care providers (PCPs). But creation and delivery of SCPs are challenging, labor intensive, and costly. The University of New Mexico Comprehensive Cancer Center (UNM CCC) treats a poor, rural, and minority patient population, and our purpose was to implement and evaluate a process to create and deliver SCPs to patients and PCPs. METHODS: Providers placed an electronic SCP order, basic information was imported, and staff compiled treatment details. Flagged SCPs were then ready for delivery, providers approved of and delivered the SCP at the next encounter, and the SCP was sent to the PCP. RESULTS: By April 2020, 283 SCPs were ordered, 241 (85.2%) were created by the designated staff, and 97 (34.2%) were given to patients after definitive therapy for breast cancer (59.1%), gynecological cancers (10.8%), prostate cancer (7.4%), colorectal cancer (5.1%), and lymphomas (4.8%). Of 97 SCPs eligible to be sent to PCPs, 75 (77.3%) were mailed or sent via EMR. Of the 41 (48.9%) SCPs sent via mail or fax, only 8 (8.3%) were received and 5 (5.2%) integrated. CONCLUSIONS: This study shows that SCPs can be delivered to patients in a poor, rural, and minority patient population but that PCP receipt and integration of SCPs are poor. Future efforts need to ensure that an oncologist to PCP education and communication tool is able reach and be integrated by PCPs.