Care Of Long-term Cancer Survivors Research Articles

Long-term Survival After Cancer: A Scoping Review of the Health Care Landscape in Germany

Abstract Background Cancer remains a global health concern, with a significant increase in new cases projected in the coming years. Although cancer treatment and diagnosis have advanced, leading to improved survival, survivors often face complex physical, emotional, and cognitive challenges. The objective of this scoping review is to provide an overview of the current landscape of specialized long-term survivorship care services in North Rhine-Westphalia (NRW) with a focus on vulnerable groups. Methods The scoping review involves two search approaches: a manual search performed by two review authors and a systematic search performed by an information specialist following Scoping Review guidance. The protocol was published on the OSF platform. The systematic search was conducted in databases such as LIVIVIO, MEDLINE and Scopus. The manual search involves identifying key categories of survivorship services and conducting online searches based on these categories in duplicate. Data extraction and synthesis is conducted using EPPI-Reviewer software, and focuses on services characteristics, patient demographics, program format, and accessibility. Results The study has identified more than 300 survivorship care services across North Rhine-Westphalia. According to preliminary results some services offer comprehensive care, while others have significant gaps, particularly in addressing the needs of vulnerable groups. One example of these gaps is the lack of tailored services specifically designed for people with a migration background. Most of the services are not available in multiple languages or gender-specific oriented. The results will be presented on the congress in detail. Conclusions This scoping review underscores the importance of tailored survivorship care, especially for vulnerable groups. Public health actions should focus on addressing disparities in access to survivorship services, enhancing existing programs, and developing new policies to support cancer survivors. Key messages • Effective survivorship care requires attention to vulnerable groups. • The care of long-term cancer survivors should receive more attention in research.

Exploring long-term cancer survivors’ care experiences and unmet needs: protocol for a qualitative study

BackgroundThe number of cancer survivors has increased in recent decades, and the majority of them suffer from sequelae of their disease and treatment. This study, which is part of the larger research project OPTILATER, aims to explore different aspects of care services for long-term survivors (≥ 5 years after initial cancer diagnosis) in Germany. The study places an emphasis on the situation of people from different age groups, with different socio-demographic and cultural backgrounds, and sexually and gender diverse individuals.MethodsTo investigate experiences related to follow-up care, focus groups (n = 2) will be conducted with members of patient advisory councils and advocacy groups, representatives of communities, healthcare workers and networks, as well as members of Associations of Statutory Health Insurance Physicians. Guided interviews will be carried out with patients and relatives (n = 40) to investigate needs, barriers and obstacles in terms of follow-up care. On this basis, additional focus groups (n = 2) will be carried out to derive possible scenarios for improving the consideration of needs. Focus groups and interviews will follow a semi-structured format and will be analysed content-analytically. Focus groups and interviews will be conducted online, recorded, transcribed, and analysed independently by two persons.DiscussionThe qualitative approach is considered suitable because of the exploratory research aims. The identification of experiences and barriers can reveal disparities and optimization potential in the care of long-term cancer survivors.

"Opportunistic Care": A Focus Group Study of Nurses' Perspective on Caring for Long-term Cancer Survivors and Their Families.

The global population of long-term cancer survivors is increasing, thanks to advances in treatments and care. Healthcare systems are working to address the unique needs of these individuals. However, there remains a knowledge gap concerning nurses' view on cancer survivorship care. To identify nurses' perspective of care for long-term cancer survivors and their families. This qualitative descriptive study used 5 focus groups comprising 33 nurses from primary healthcare and specialized oncology care. Data analysis was conducted through thematic analysis, and the study received ethical approval. Long-term cancer survivors and their families often remained unrecognized as a distinct group within the healthcare system. Consequently, nurses provide what can be termed as "opportunistic care" during nurse-survivor encounters, addressing health needs beyond the purpose of the initial healthcare visit. This absence of a systematic or structured approach for this patient group has prompted nurses to seek the establishment of a comprehensive framework through survivorship care plans, thus ensuring a continuum of care for this specific population. The lack of a structured approach to caring for long-term cancer survivors and their families, often invisible as a distinct population group, results in nurses providing care on an opportunistic basis. It is crucial to develop and implement survivorship care plans tailored to this population's needs. Simultaneously, it is important to advance research in this area and establish an educational framework for nurses, enabling them to effectively address the care of long-term cancer survivors and their families.

The importance of comprehensive cancer survivorship care plans in general practice.

The number of people living with or beyond cancer are expected to rise. General practice-led cancer survivorship plans have been proposed as a way to address ongoing healthcare needs (including physical and psychosocial care) and care coordination, as well as the prevention and management of other chronic illnesses. The aim of this paper is to discuss the role of general practice in the long-term care of cancer survivors and provide a summary of recommendations for comprehensive cancer survivorship careplanning in general practice. General practice provides cancer survivors with ongoing support within their community from pre-diagnosis onwards. It is recommended that comprehensive cancer survivorship care plans include the cancer treatment summary and follow-up care planning; the management of other comorbid chronic conditions; health promotion and disease prevention with tailoring to shared goals; and the cancer survivor's unique situation.

Functional Decline in the Cancer Patient: A Review.

Simple SummaryOlder patients with cancer are more likely to experience a deterioration in their functional status than are their similar-aged, cancer-free counterparts. Such functional decline can be accelerated by cancer treatment. With adequate long-term care comprising routine functional assessment and evidence-based interventions, functional status is likely to be maintained, or the rate of decline slowed. Mitigating the risk of functional decline is vital given its impact on quality of life and mortality.A decline in functional status, an individual’s ability to perform the normal activities required to maintain adequate health and meet basic needs, is part of normal ageing. Functional decline, however, appears to be accelerated in older patients with cancer. Such decline can occur as a result of a cancer itself, cancer treatment-related factors, or a combination of the two. The accelerated decline in function seen in older patients with cancer can be slowed, or even partly mitigated through routine assessments of functional status and timely interventions where appropriate. This is particularly important given the link between functional decline and impaired quality of life, increased mortality, comorbidity burden, and carer dependency. However, a routine assessment of and the use of interventions for functional decline do not typically feature in the long-term care of cancer survivors. This review outlines the link between cancer and subsequent functional decline, as well as potential underlying mechanisms, the tools that can be used to assess functional status, and strategies for its prevention and management in older patients with cancer.

Implementation of ePROs in the care of long-term cancer survivors.

334 Background: Standard methods for implementation of electronic patient reported outcomes (ePROs) in the routine care of cancer survivors remain unclear. To address this gap, we assessed the technical and operational feasibility of implementing ePROs into the clinical workflow of four survivorship clinics, Genitourinary (GU), Head & Neck (HN), Thyroid (THY), and Stem Cell Transplant (SCT). Methods: This quality improvement study was conducted from 9/1/2019 to 4/30/2021. Benchmarks of ≥ 50% were established for two outcomes including: (1) Delivery Rate - percentage of patients who received the ePRO prior to their clinic visit and (2) Adherence Rate - percentage of patients who completed one ePRO. Data were collected at T0 (Baseline) (09/01/2019 to 12/31/2020) and T1 (1/1/2021 to 4/30/2021). Patients completed the survey 3-7 days prior to a clinic visit. The timing to capture ePROs’ data was tailored to the specific cancer site. Operational steps were: 1) questionnaire was ordered for scheduled survivorship appointment; 2) electronic medical record system (EMRS) pushed the questionnaire to the patient portal app with a message asking the patient to complete and submit the ePROs survey, 3) data was pushed back to the provider by the EMRS; and 4) results stored in the medical record were accessed by the provider prior to or on the day of the patient’s visit. Data were collected and stored using the EPIC Data Universes and reported through Microsoft Power BI. This institutional Quality Improvement Assessment Board approved this study. Results: The Table shows the improvement in the benchmark for sent and adherence rates between T0 and T1. A few clinics showed room for improvement. Patient engagement facilitators included being scheduled for a virtual visit and having staff sent prompts prior to visits. Challenges were: (1) variation in the time ePROs were available in the medical records, 2) inconsistent linking of scheduled visits and prompt to send the survey, and 3) patients’ not opening, completing, or submitting the survey even when prompted to do so. Opportunities included (1) developing a patient education flyer describing ePROs’ role in patient care, (2) providing instruction on the completion and completion of how to complete the ePRO, and (3) conducting staff education sessions on how to link scheduled visits with ePROs’ patient prompts. Conclusions: Our preliminary results indicate that integration ePROs can be considered an acceptable approach to improve follow-up care of cancer survivors but with room for improvement in some clinics. Future evaluation will further explore patients’ ePROs’ impact on clinical outcomes and patient engagement.[Table: see text]

Life after Cell Death-Survival and Survivorship Following Chemotherapy.

Simple SummaryTreatment of aggressive cancers often relies on chemotherapy. This treatment has improved survival rates, but while effective at killing cancer cells, inevitably it also kills or alters the function of others. While many of the known effects are transient and resolve after treatment, as survival rates increase, so does our understanding of the long-term health costs that accompany cancer survivors. Here we provide an overview of common long-term morbidities known to be caused by conventional chemotherapy, including the risk of relapse, but more importantly, the cost of quality of life experienced, especially by those who have cancer in early life. We aim to highlight the importance of the development of targeted therapies to replace the use of conventional chemotherapy, but also that of treating the patients along with the disease to enable not only longer but also healthier life after cancer.To prevent cancer cells replacing and outnumbering their functional somatic counterparts, the most effective solution is their removal. Classical treatments rely on surgical excision, chemical or physical damage to the cancer cells by conventional interventions such as chemo- and radiotherapy, to eliminate or reduce tumour burden. Cancer treatment has in the last two decades seen the advent of increasingly sophisticated therapeutic regimens aimed at selectively targeting cancer cells whilst sparing the remaining cells from severe loss of viability or function. These include small molecule inhibitors, monoclonal antibodies and a myriad of compounds that affect metabolism, angiogenesis or immunotherapy. Our increased knowledge of specific cancer types, stratified diagnoses, genetic and molecular profiling, and more refined treatment practices have improved overall survival in a significant number of patients. Increased survival, however, has also increased the incidence of associated challenges of chemotherapy-induced morbidity, with some pathologies developing several years after termination of treatment. Long-term care of cancer survivors must therefore become a focus in itself, such that along with prolonging life expectancy, treatments allow for improved quality of life.

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study.

BackgroundAs a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors.ObjectiveThe purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors.MethodsTwenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method.ResultsCRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information.ConclusionsFor CRC, survivors may find the greater value in a PHR’s medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients’ needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

Communication and hearing complications in patients with childhood cancers

ABSTRACTThe survival rates of childhood cancers have increased significantly in recent years, and the long-term complications of childhood cancers have become an important issue. Although communication and hearing complications have been documented in survivors, they have not been widely investigated across different types of cancer. Therefore, we conducted a retrospective cohort study at Queen Mary Hospital on 318 children with acute lymphoblastic leukaemia (ALL), stage-4 neuroblastoma (NB), head and neck (H&N) cancers, or brain tumours (BTs) to describe the prevalence, type, onset time, and associated factors of communication and hearing complications in each group. Communication deficit and hearing loss (overall prevalence rates, 13.8% and 10.7%, respectively) were most prevalent in the BT group. Dysarthria, language impairment, and bilateral sensorineural hearing loss were the most common complications. Diagnosis type was a predictive factor for developing complications, while the younger age of diagnosis was a protective factor against developing communication complications. Complications tended to occur within 5 years after diagnosis in the stage-4 NB and ALL groups, but after the fifth year in the H&N cancer and BT groups. Our findings suggest that tumour location and treatment method are associated with different risks of developing complications in patients with certain diagnoses. Neuroplasticity may act to protect younger patients from developing communication difficulties. These findings can help optimize the long-term care of cancer survivors in terms of treatment selection, counselling, and appropriate long-term follow-up and can guide future research in preventive measures and corresponding interventions.

The value of linked data: prescriptions dispensed in the community linked to the national cancer registration data in England

BackgroundImprovements in cancer survival have resulted in an increasing population of cancer survivors who are managed in primary care. A partnership was established between the National Cancer Registration and Analysis Service and NHS Business Services Authority to link national cancer registration data to community dispensed prescriptions data.AimWe describe the linkage between these two datasets and the potential value of the resulting data resource.MethodCommunity prescriptions data was collected for April – July 2015 initially. Pseudonymised prescriptions data was supplied to NCRAS for linkage at an individual patient level.Results1.68 million individuals, with a history of cancer and having received a prescription April–July 2015, were identified in both datasets. This was 6% of all individuals prescribed medication in that time. 90,840 patients were newly diagnosed with cancer and had prescriptions in this time period: 90% of all patients diagnosed April–July 2015. Comparison of the two datasets identified data quality issues which must be considered, and these will also be presented.ConclusionThis linked resource has the potential to become largest of its kind and is thus crucial to primary care research. Prescribed medication and its correlation with symptom profiles or co-morbidity at time points relative to diagnosis, will offer unique insights into prescribing patterns and potential associations with earlier diagnosis. Full exploitation of this linked data offers the potential for an evidence base for empowering survivors, updating clinical follow-up guidelines and educating primary care physicians who manage the long-term care of cancer survivors.

Cancer Survivorship Care in Advanced Primary Care Practices

Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors. To explain why primary care has not begun to integrate comprehensive cancer survivorship services. Comparative case study of 12 advanced primary care practices in the United States recruited from March 2015 to February 2017. Practices were selected from a national registry of 151 workforce innovators compiled for the Robert Wood Johnson Foundation. Practices were recruited to include diversity in policy context and organizational structure. Researchers conducted 10 to 12 days of ethnographic data collection in each practice, including interviews with practice personnel and patient pathways with cancer survivors. Fieldnotes, transcripts, and practice documents were analyzed within and across cases to identify salient themes. Description of cancer survivorship care delivery in advanced patient-centered medical homes, including identification of barriers and promotional factors related to that care. The 12 practices came from multiple states and policy contexts and had a mix of clinicians trained in family or internal medicine. All but 3 were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes. None of the practices provided any type of comprehensive cancer survivorship services. Three interdependent explanatory factors emerged: the absence of a recognized, distinct clinical category of survivorship in primary care; a lack of actionable information to treat this patient population; and current information systems unable to support survivorship care. To increase the potential for primary care transformation efforts to integrate survivorship services into routine care, survivorship must become a recognized clinical category with actionable care plans supported by a functional information system infrastructure.

An educational program to improve cancer survivorship research.

94 Background: ASCO has recognized the need to expand its educational portfolio to focus on long-term care of cancer survivors. Academic programs across health care professions overlook this topic in their curricula. To address this gap, we developed a survivorship research internship for undergraduate students enrolled in public health or health education programs. Here we present the results of an evaluation to assess the level of satisfaction of trainees and improve the curriculum. Methods: All students who completed the internship were eligible to participate in the evaluation. The authors conducted the survey using an electronic data system. Respondents were asked to rate their level of satisfaction with the curriculum and specific assignments, i.e. conducting their own survivorship research project, taking classes about PubMed or EndNotes, and abstracting data from medical records to use in survivorship care plans. Other measures were whether a trainee had written/published an abstract/manuscript, pursued an advanced degree, or obtained a job in health care after completing the program. Descriptive statistics were used to summarize results. Results: An 85% response rate was achieved (34/40 respondents). The majority were female (82.4%), Caucasian (56.3%), and enrolled in public health programs (41.2%). Almost all respondents (90.9%) strongly agreed or agreed they had a better understanding of the process needed to conduct survivorship research. 50.0% reported being most satisfied with the internship experience. 36.4% reported data abstraction and participating in PubMed or EndNotes classes were least useful. 35.3% reported observing health care professionals in the clinical setting was the most useful. 88.2% strongly agreed or agreed that the training was useful in their current work position.18.8% have achieved advanced degrees in medicine, nursing, or public health. Two of the 34 trainees have published a paper in a peer-reviewed journal or presented a poster at a scientific conference. Conclusions: Results indicated the vast majority of trainees had a positive experience engaging in the survivorship research internship. This strategy is one method that can be used to build and enhance education in survivorship care and research.

Is It Better to Transfer Long-Term Cancer Survivors to General Practitioners or Develop Clinics for Long-Term Survivors Within the Cancer Centers?

TO THE EDITOR: The interesting work by Virgo et al highlights the importance and at the same time the problematic of long-term follow-up for cancer survivors. The limited experience and low interest of the general practitioner on the management of cancer patients in long-term care are major barriers to the transferability of long-term patients with cancer to their general physician, although is clear that the increasing number of cancer survivors are a limitation for the care from medical oncologist. As admitted by Virgo et al, one limitation of the study is that this was based mainly on breast and colon cancer survivors while the difference in patients with lymphoma could have been more evident. In our view, the problem not yet studied of the transfer of the patients from medical oncologist/hematologist to general practitioner is the willingness of patients with cancer to do that. In fact, the patients with cancer are usually reluctant to abandon the primary medical oncologist and to be transferred to their general practitioners. It should be important to have the point of view of organizations for patients with cancer on this matter. In our view, it would be much better, although more costly, to develop a cancer survivors clinic within the department of oncology of the major cancer hospitals with medical oncologist and psychologist working together, and transfer these patients to these new structures to give the best supportive care either medical and psychological to patients with cancer, also in association with other specialists, in particular cardiologists. In fact, it should not be forgotten that cardiovascular adverse effects are becoming increasingly important in long-term care of cancer survivors, in particular patients with breast cancer and lymphoma that may have received anthracyclines and/or radiotherapy. In our cancer center, the cancer clinic for long-term survivors is active with combined work of medical oncologist/hematologist and psychologist.

Multidisciplinary care clinics: A model to deliver personalized survivorship care.

e19629 Background: Multidisciplinary care models provide a comprehensive approach to improve the care of long-term cancer survivors as recommended by the Institute of Medicine report.. Here we describe a Multidisciplinary Survivorship Care Model and the metrics used to evaluate the delivery of personalized care to long-term survivors. Methods: Critical components used to develop survivorship services included: 1) engaging clinical and administrative leadership; 2) conducting extensive reviews/syntheses of published literature including health promotion, prevention and risk reduction, late treatment effects, and rehabilitative services for each disease-site; 3) determining eligibility criteria to transition patients from active-disease care to survivorship care; 4) developing, implementing, and evaluating algorithms by involving a multidisciplinary team expert-consensus; 5) obtaining approval for integration of algorithms into practice by institutional credentialing and regulatory committees; 6) identifying appropriate survivorship clinics to pilot the feasibility of algorithms in routine clinical operations; 7) performing improvement checks of the clinic operations; and 8) revising operations and scheduling as needed. Metrics used to evaluate the progress of the clinical activity of each multidisciplinary survivorship care clinic (MSCC) included number of unique patients transitioned, number seen, number of arrived appointments, number of summary care plans issued, and survivors’ satisfaction. Results: The MSCCs included gynecology, thyroid, genitourinary, stem cell transplant, breast, head and neck, colorectal, lymphoma, and melanoma, with varied launch dates for each clinic. Between 09/01/2008 and 12/31/2011, there were a total of 7396 unique survivors, 12,741 arrived appointments, and 10,016 summary care plans completed within 30 days from appointment. Conclusions: Dedicated multidisciplinary survivorship care models are a comprehensive approach to deliver long-term survivorship care. Comparative effectiveness and other health outcomes research examining the feasibility, usability, acceptance, and effectiveness of the MSCC by providers and survivors is warranted.

Long-term survivors of adult cancers and uptake of primary health services: A systematic review

Aim The aim of this paper is to systematically review the literature on the use of primary and community care services by long-term survivors of adult cancers. Methods We conducted a systematic search of eight databases and considered papers looking at primary care aspects of surviving cancer at least 3 years past diagnosis. Results Ten eligible papers in four categories: consultation rates in primary care, cancer screening, use of preventative services and chronic disease management. There was no conclusive evidence that cancer survivors have increased rates of consultation in primary care. The studies reported that cancer screening is well managed in survivors. Preventative and chronic care is worse in long-term colorectal cancer survivors compared with long-term breast cancer survivors and controls. Conclusion We found little research, especially outside the United States, relating to the care of long-term cancer survivors in primary care. Future work should examine screening for treatment-specific sequelae and the quality of care for co-morbid disease.

Risk of preterm baby increased in cancer survivors

Women who have survived cancer during childhood are at increased risk of having a baby born preterm or with low birthweight, say researchers. In their study, the risk of having a preterm birth was about double that of a woman who did not undergo cancer treatment. “Having the uterus exposed to high doses of radiation seems to be a big source of the problem”, says lead author Lisa Signorello (International Epidemiology Institute, Rockville, MD, USA). “The children of women who had the highest dose of uterine irradiation in our study were three and a half times more likely to be born preterm and almost seven times more likely to be born with low birthweight than children of other cancer survivors who did not receive radiotherapy.” Signorello and colleagues reviewed a database of 2201 children who were born to 1265 female survivors of childhood cancer between 1968 and 2002. They compared them with 1175 children of 601 female siblings who did not have cancer and found that children of survivors were more likely to be born preterm than were those of their siblings (21% vs 13%, respectively, p<0·001). “On the positive side, we found that the radiation dose to the uterus needed to be quite high to result in these problems”, says Signorello. Survivors who had undergone highdose radiotherapy to the uterus were more likely to have babies with low birthweight than were those who had either no radiotherapy or low-dose radiotherapy (36% vs 8%; J Natl Cancer Inst 2006; 98: 1453–61). “These results should become part of the arsenal of information that both patients and physicians have at their disposal to guide the appropriate long-term care of cancer survivors”, she concludes. Leslie Schover (MD Anderson Cancer Center, Houston, TX, USA) thinks that “the important issue for young women who have survived paediatric cancer is the complex infor mation they need to understand about their fertility and safety of pregnancy. Professional counselling is very help ful when making choices about reproduction”.

Primary Care of Long-term Cancer Survivors

Primary Care of Long-term Cancer Survivors