Follow-up care for cancer survivors: the views of clinicians

Background:

Evidence for the efficacy of late effects surveillance in adult cancer survivors is lacking and there is little agreement among clinicians on appropriate follow-up care.

Methods:

We report the views of both cancer experts and general practitioners (GPs) on long-term follow-up provision for cancer survivors, focussing on the 18–45 years age group. A total of 421 cancer experts (36% haematologists, 33% oncologists, 18% surgeons, 10% nurses, 2% other) and 54 GPs responded to a structured online survey. Reasons for follow-up care (clinical or supportive); advantages and disadvantages of follow-up in primary care; current practice; and resources required for a quality follow-up service were assessed.

Results:

Clinicians valued clinical reasons for follow-up more highly than supportive reasons (P<0.001). Learning more about late effects and checking for cancer recurrence were rated as the most important reasons for follow-up by cancer experts and GPs. A total of 85% of cancer specialists hold follow-up consultations alongside patients on active treatment. Cancer experts agreed that primary care follow-up would increase their availability for acute oncological care, but reduce information on late effects. The most important resource to provide a quality follow-up service was specialist nursing support (91%).

Conclusions:

Follow-up guidelines that include late effects surveillance are needed. Where and who should deliver this care requires further debate.     

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.     

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.     

Lifestyle behaviours of young adult survivors of childhood cancer

This cross-sectional study collected baseline data on the health behaviours of a large population of survivors of childhood cancer in the UK, aged 18-30 years, compared with those of sex- and age-matched controls. Data from 178 young adult survivors of childhood cancer, diagnosed and treated at Bristol Children's Hospital, 184 peers from the survivors' GP practices and 67 siblings were collected by postal questionnaire. Conditional logistic regression analysis showed that, for matched sets of survivors and controls, survivors of a variety of childhood cancers reported lower levels of alcohol consumption (P=0.005), lower levels of cigarette smoking (P=0.027) and lower levels of recreational drug use (P=0.001) than controls. Analysis of matched sets of survivors and siblings showed similar trends but no significant differences. A health behaviour index for each participant was constructed from the data collected on five key health behaviours which influence future health status. Comparison of the means for each case group showed that survivors of childhood cancer were leading healthier lives than controls or siblings. This finding was expressed most clearly as the difference in the means of the health behaviour index for each case group, derived from five health behaviours (one-way ANOVA, P<0.001).     

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.     

Limitations in health care access and utilization among long‐term survivors of adolescent and young adult cancer

BACKGROUND:

Health care outcomes for long‐term survivors of adolescent and young adult (AYA) cancer were compared with young adults without a cancer history, using the 2009 Behavioral Risk Factor Surveillance System data.

METHODS:

Eligible participants were 20 to 39 years of age. There were N = 979 who self‐reported a cancer diagnosis between the ages of 15 to 34 years and were at least 5 years from diagnosis (excluding nonmelanoma skin cancer). The remaining 67,216 participants with no cancer history were used as controls. Using multivariable regressions, relative risks and 95% confidence intervals were generated to examine the relationship of survivor status on indicators of poor health care (uninsured, no personal health care provider, no routine care, and avoiding seeing a doctor due to cost). Adjusted proportions were calculated by demographic groups. Results are weighted by Behavioral Risk Factor Surveillance System survey design.

RESULTS:

Although the proportion uninsured did not differ (21% of survivors vs 23% of controls), AYA survivors reported forgoing care due to cost at higher levels than controls (relative risk = 1.67, 95% CI = 1.44‐1.94). Cost barriers were particularly high for survivors aged 20 to 29 years (44% vs 16% of controls; P < .001) and female survivors (35% vs 18% of controls; P < .001). Survivors reporting poorer health had more cost barriers. Moreover, uninsured survivors tended to report lower use of health care than did controls.

CONCLUSIONS:

AYA cancer survivors may forgo health care due to cost barriers, potentially inhibiting the early detection of late effects. Expanding health insurance coverage for young cancer survivors may be insufficient without adequate strategies to reduce their medical cost burdens. Cancer 2012. © 2012 American Cancer Society.     

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.

     

Impact of insurance type on survivor-focused and general preventive health care utilization in adult survivors of childhood cancer: the Childhood Cancer Survivor Study (CCSS)

BACKGROUND:

Lack of health insurance is a key barrier to accessing care for chronic conditions and cancer screening. The influence of insurance type (private, public, none) on survivor‐focused and general preventive health care in adult survivors of childhood cancer was examined.

METHODS:

The Childhood Cancer Survivor Study is a retrospective cohort study of childhood cancer survivors diagnosed between 1970 and 1986. Among 8425 adult survivors, the relative risk (RR) and 95% confidence interval (CI) of receiving survivor‐focused and general preventive health care were estimated for uninsured (n = 1390) and publicly insured (n = 640), compared with for the privately insured (n = 6395)

RESULTS:

Uninsured survivors were less likely than those privately insured to report a cancer‐related visit (adjusted RR, 0.83; 95% CI, 0.75‐0.91) or a cancer center visit (adjusted RR, 0.83; 95% CI, 0.71‐0.98). Uninsured survivors had lower levels of utilization in all measures of care in comparison with privately insured. In contrast, publicly insured survivors were more likely to report a cancer‐related visit (adjusted RR, 1.22; 95% CI, 1.11‐1.35) or a cancer center visit (adjusted RR, 1.41; 95% CI, 1.18‐1.70) than were privately insured survivors. Although publicly insured survivors had similar utilization of general health examinations, they were less likely to report a Papanicolaou test or a dental examinations

CONCLUSIONS:

Among this large, socioeconomically diverse cohort, publicly insured survivors utilize survivor‐focused health care at rates at least as high as survivors with private insurance. Uninsured survivors have lower utilization of both survivor‐focused and general preventive health care. Cancer 2011. © 2010 American Cancer Society.     

Parents' preferences for the organisation of long‐term follow‐up of childhood cancer survivors

Parents take an important role in follow‐up of young cancer survivors. We aimed to investigate (1) parents' preferences for organisation of follow‐up (including content, specialists involved and models of care), and (2) parents' and children's characteristics predicting preference for generalist vs. specialist‐led follow‐up. We sent a questionnaire to parents of childhood cancer survivors aged 11–17 years. We assessed on a 4‐point Likert scale (1–4), parents' preferences for organisation of long‐term follow‐up. Proposed models were: telephone/questionnaire, general practitioner (GP) (both categorised as generalist for regression analysis); and paediatric oncologist, medical oncologist or multidisciplinary team (MDT) (categorised as specialists). Of 284 contacted parents, 189 responded (67%). Parents welcomed if visits included checking for cancer recurrence (mean = 3.89), late effects screening (mean = 3.79), taking patients seriously (mean = 3.86) and competent staff (mean = 3.85). The preferred specialists were paediatric oncologists (mean = 3.73). Parents valued the paediatric oncologist model of care (mean = 3.49) and the MDT model (mean = 3.14) highest. Parents of children not attending clinic‐based follow‐up (OR = 2.97, p = .009) and those visiting a generalist (OR = 4.23, p = .007) favoured the generalist‐led model. Many parents preferred a clinic‐based model of follow‐up by paediatric oncologists or a MDT. However, parents also valued the follow‐up care model according to which their child is followed up.     

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.