Follow-up care for cancer survivors: views of the younger adult

Background:

Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18–45 years) on provision of follow-up and preferences for care.

Methods:

A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed.

Results:

In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with ‘late effects'' and ‘fertility'', which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated.

Conclusion:

Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.     

Transition guidelines: An important step in the future care for childhood cancer survivors. A comprehensive definition as groundwork

Evidence-based clinical practice guidelines are essential to ensure that childhood cancer survivors at risk of chronic health conditions receive effective long-term follow-up care. However, adult survivors of childhood cancer are not always engaged in recommended health promotion and follow-up practices, as many centres do not have a formal transition programme that prepares survivors and their families for successful transfer from child-centred to adult-oriented healthcare. The need for a specific pan-European guideline for the transition of care for childhood cancer survivors has been recognised. The first step is to define the concept of transition of care for survivors of childhood cancer based on existing evidence.     

Follow-up care for young adult survivors of cancer: lessons from pediatrics

Introduction Recent advances in treatment of childhood cancer have resulted in overall survival rates approaching 75%, but approximately two-thirds experience late-effects related to the disease or treatment. Consequently, recommendations for comprehensive follow-up have been made. As the number of survivors of adult cancers increase, similar concerns about how to provide follow-up and achieve optimal quality of life are being raised. In this paper we propose that management of cancer survivors diagnosed in young adulthood (18–45 years) could benefit from experience gained treating survivors of childhood cancer. Materials and methods We reviewed research relating to differences in survival rates and late-effects; current arrangements for follow-up; effectiveness; and problems in organization of follow-up separately for survivors of child and adult cancers. Results A number of models of follow-up were identified. Rationale for follow-up included early identification and treatment of second cancer and late-effects, health promotion and screening. Increasing numbers of survivors and range of late-effects were identified as problems in organizing services. A possible solution is risk-stratified follow-up, currently being developed in pediatrics. Conclusions New models of follow-up are needed that take account of financial costs for health services and survivors’ concerns about their current and future health. Implications for continuing refinement of treatment protocols must be an integral part of the service. Implications for cancer survivors International standards are needed to ensure all survivors have access to expert follow-up care and can benefit from new information that might lead to earlier treatment of late-effects.     

Predictive factors of long-term follow-up attendance in very long-term childhood cancer survivors

Background

Long-term follow-up (LTFU) clinics have been developed but only some childhood cancer survivors (CCS) attend long-term follow-up (LTFU).

Objective

To identify factors that influence LTFU attendance.

Methods

Five-year CCS treated for a solid tumor or lymphoma in Gustave Roussy before 2000, included in the FCCSS cohort (French Childhood Cancer Survivor Study), aged >18 years and alive at the date of the LTFU Clinic opening (January 2012) were invited to a LTFU visit. Factors associated with attendance at the LTFU clinic between 2012 and 2020 were estimated using logistic regression analyses. Analyses included different types of factors: clinical (tumor characteristics, cancer treatments, late effects), medical (medical expenses were used as a proxy of survivor’s health status), social (deprivation index based on census-tract data relating to income, educational level, proportion of blue-collar workers, and unemployed people living in the area of residence), and spatial (distance to the LTFU clinic).

Results

Among 2341 CCS contacted (55% males, mean age at study, 45 years; SD ± 10 years; mean age at diagnosis, 6 years; SD ± 5 years), 779 (33%) attended at least one LTFU visit. Initial cancer-related factors associated with LTFU visit attendance were: treatment with both radiotherapy and chemotherapy (odds ratio [OR], 4.02; 95% CI, 2.11–7.70), bone sarcoma (OR, 2.43; 95% CI, 1.56–3.78), central nervous system primitive tumor (OR, 1.65; 95% CI, 1.02–2.67), and autologous hematopoietic cell transplant (OR, 2.07; 95% CI, 1.34-3.20). Late effects (OR, 1.70; 95% CI, 1.31–2.20), highest medical expenses (OR, 1.65; 95% CI, 1.22–2.22), living in the most advantaged area (OR vs. the most deprived area = 1.60; 95% CI, 1.15–2.22), and shorter distance from LTFU care center (<12 miles) also increased attendance.

Conclusions

Patients who are apparently healthy as well as socially disadvantaged and living far away from the center are less likely to attend LTFU care.

Plain Language Summary

• Among 2341 adult childhood cancer survivors contacted between 2012 and 2020, 33% attended at least one long-term follow-up visit.
• Clinical factors related to attendance were multimodal treatment of first cancer (combining chemotherapy and radiotherapy), stem cell transplant, type of diagnosis (bone tumor and central nervous system primitive tumor), late effects (at least one disease among second malignancy, heart disease, or stroke), and highest medical expenses.
• In addition, the study identified social and spatial inequalities related to attendance, with independent negative effects of distance and social deprivation on attendance, even though the medical costs related to the long-term follow-up examinations are covered by the French social security system.

     

Rising incidence of breast cancer among female cancer survivors: implications for surveillance

The number of female cancer survivors has been rising rapidly. We assessed the occurrence of breast cancer in these survivors over time. We computed incidence of primary breast cancer in two cohorts of female cancer survivors with a first diagnosis of cancer at ages 30+ in the periods 1975–1979 and 1990–1994. Cohorts were followed for 10 years through a population-based cancer registry. Over a period of 15 years, the incidence rate of breast cancer among female cancer survivors increased by 30% (age-standardised rate ratio (RR-adj): 1.30; 95% CI: 1.03–1.68). The increase was significant for non-breast cancer survivors (RR-adj: 1.41, 95% CI: 1.04–2.75). During the study period, the rate of second breast cancer stage II tripled (RR-adj: 3.10, 95% CI: 1.73–5.78). Non-breast cancer survivors had a significantly (P value=0.005) more unfavourable stage distribution (62% stage II and III) than breast cancer survivors (32% stage II and III). A marked rise in breast cancer incidence among female cancer survivors was observed. Research to optimise follow-up strategies for these women to detect breast cancer at an early stage is warranted.     

Late effects in adult survivors of childhood cancer: the need for life-long follow-up.

BACKGROUND: To assess health status and health-related quality of life (HRQoL) in childhood cancer survivors who were not involved in regular long-term follow-up. PATIENTS AND METHODS: One hundred and twenty-three long-term survivors, median age 33 (19-50) years, follow-up 27 (9-38) years, were recalled to the long-term follow-up clinic. Most of them were treated in the period 1970-1990. Late effects were graded using the Common Terminology Criteria for Adverse Events, version 3 (CTCAEv3). HRQoL was assessed by RAND-36. Socio-economic factors were compared with data from Statistics Netherlands (CBS). RESULTS: Grade 1-2 late effects were found in 54% of the survivors, grade 3-4 in 39%, two or more late effects in 70% and grade 2-4 previously unknown late effects in 33%. Survivors had significantly lower scores on RAND-36 compared with controls. CONCLUSIONS: As nearly 40% of these long-term childhood cancer survivors suffer from moderate to severe late effects and 33% had previously unknown late effects it is worthwhile recalling these patients to follow-up. Where and by whom this follow-up can best be done is still a question that needs to be answered.     

Self-reported health and use of health care services in long-term cancer survivors

Owing to an increasing number of long-term cancer survivors, the use of health care services and somatic health problems were compared between cancer survivors and a noncancer population. Data from the Nord-Trondelag Health Survey 2 (HUNT 2, 1995-1997) was merged with the Cancer Registry of Norway. Six cancer subgroups were constructed with diagnosis 5 years prior HUNT 2: testicular cancer (n= 59), colorectal cancer (n= 175), prostate cancer (n= 87), breast cancer (n= 258), gynaecological cancer (n= 153) and lymphoma/leukaemia (n= 83). For each cancer survivor 3 matched noncancer controls were selected from the HUNT 2 survey. The prevalence of common health problems, use of health care services and unfavourably life style parameters were compared between the 2 groups. Cancer survivors used health care services and received social welfare benefits more often than the controls. There was an increased risk of perceiving poor health after a history of cancer. Common health problems and/or unfavourable life style parameters could not explain poor health or the increased use of health care services among cancer survivors. Further studies are needed to investigate the reasons for increased use of health care services and perceived poor health in cancer survivors.     

Follow-up care in breast cancer

Improved early diagnosis and treatment of breast cancer has resulted in a significant decrease in breast cancer-related mortality in many countries. Breast cancer survivors live longer. As a consequence, the prevalence of breast cancer survivors will rise and will put an increasing burden on follow-up oncology clinics. Follow-up of breast cancer patients should be aimed at the detection of curable disease and must comply with the needs of the patient. Regular physical examination may be useful for timely discovery of locoregional relapse, and screening mammography for the early detection of a second primary breast cancer or breast relapse after breast-conserving therapy. Onerous searching for distant metastases by routine investigations will not improve life expectancy of the patient and may even be harmful because of false-positive findings and false expectations and reassurance. Patients seek emotional support, information, physical and cosmetic recovery and prompt access to the oncologist in case of worrying complaints, signs or symptoms. Support, information and screening for relatively healthy patients can be provided by breast care nurse practitioners or family practitioners. For more complex issues, such as debilitating functional treatment regimens, estrogen deprivation symptoms, pregnancy after breast cancer or symptoms suspicious for a relapse, an experienced oncologist should be at hand.     

Health care use during cancer survivorship: Review of 5 years of evidence

Improvements in treatment strategies have resulted in increasing survival rates among patients diagnosed with cancer but also result in a growing population of individuals who have greater health care needs. These needs will persist from diagnosis throughout the continuing phase of care, or the survivorship phase. To better define models of survivorship care, there must be a strong evidence base in survivor health care use patterns. The objective of this review, which covers studies from 2012 to January 2018, was to evaluate the available evidence on patterns of health care visits among survivors of adult cancers and to understand what is known about the rate of health care visits, the physician specialties associated with these visits, and/or the types health care settings (eg, outpatient, emergency room). The findings underscore the importance of primary care, with the majority of studies reporting that >90% of survivors visited a primary care provider in the prior year. Visits to oncologists and/or other physician specialties were positively associated with receiving cancer screenings and obtaining quality care for noncancer-related conditions. High care density/low care fragmentation between physician specialties had lower costs and a lower likelihood of redundant health care utilization. The follow-up in almost all studies was 3 years, providing short-term evidence; however, as the survivorship period lengthens with improved treatments, longer follow-up will be required. The long-term patterns with which survivors of cancer engage the health care system are critical to designing long-term follow-up care plans that are effective in addressing the complex morbidity that survivors experience.     

The willingness of general practitioners to be involved in the follow-up of adult survivors of childhood cancer

Background Long-term follow-up of childhood cancer survivors is mainly organised by paediatric oncologists and until now general practitioners (GPs) are rarely involved. To ensure appropriate follow-up for all survivors into adulthood, a combined effort of paediatric oncologists and general practitioners might be the solution. We investigated the willingness of GPs, who had followed a postgraduate course on late effects of cancer treatment, to participate in a shared care model for follow-up of adult childhood cancer survivors as well as what their requirements would be in case of participation. Methods From the Northern Netherlands, 358 GPs participated in a postgraduate course on late effects in paediatric cancer survivors. After the course, they were asked to complete a 10-item questionnaire on motivation to participate in the regular follow-up of adult childhood cancer survivors as well as their conditions to participate. Results The response rate was 65%. Of the responders, 97% were willing to participate in a shared care model for follow-up and 64% felt that it was their responsibility to be in charge of childhood cancer survivors. The main requirements for participation were the availability of guidelines (64%), sufficient information about the patient’s medical history (37%), and short communication lines (45%). The main barriers to participate were workload (16%), lack of knowledge (15%), and lack of communication (13%). Conclusion A significant number of GPs are ready to participate in the long-term follow-up of adult childhood cancer survivors if adequate guidelines and medical information is provided and communication lines are clear.