Physical and psychological health in rare cancer survivors

Purpose

Registries provide a unique tool for tracking quality of life in rare cancer survivors, whose survivorship experience is less known than for common cancers. This paper reports on these outcomes in 321 patients enrolled in the Rare Cancer Genetics Registry diagnosed with rare gastrointestinal, genitourinary, gynecologic, sarcoma, head/neck, or hematologic cancers.

Methods

Four outcomes were assessed, reflecting registrants’ self-reported physical and mental health, psychological distress, and loneliness. Combining all patients into a single analysis, regression was used to evaluate the association between outcomes and socio-demographic and clinical factors.

Results

Median time since diagnosis was 3 years (range 0–9); 69 % were no longer in treatment. Poorer physical health was reported in registrants who were older at diagnosis, unmarried, and still in treatment. Poorer mental status was associated with younger diagnosis age and unmarried status. Psychological distress varied by cancer type and was higher among currently treated and unmarried registrants. Greater loneliness was reported in registrants with gynecological cancers, and those who were less educated or unmarried. The physical and mental health profile of rare cancer survivors is similar to what is reported for common cancers.

Conclusions

Unmarried participants reported poorer outcomes on all measures of quality of life. Furthermore, physical and mental health were not significantly different by cancer type after adjustment for diagnosis age, whether currently in treatment and marital status. Thus, the combined analysis performed here is a useful way to analyze outcomes in less common diseases. Our findings could be valuable in guiding evaluation and intervention for issues impacting quality of life.

Implications for Cancer Survivors

Rare cancer survivors, particularly those without spousal support, should be monitored for challenges to the physical as well as psychological aspects of quality of life.

     

Prevalence of perceived cognitive dysfunction in survivors of a wide range of cancers: results from the 2010 LIVESTRONG survey

Purpose

With cancer survivors now numbering over 13 million in the United States, and expected to continue to increase, it is important to consider the needs of this growing population. In the literature, one of the most common complaints by cancer survivors is perceived cognitive dysfunction. Since the preponderance of the research has focused on breast cancer survivors, the purpose of the present study was to explore the prevalence and correlates of perceived cognitive dysfunction in a large sample of cancer survivors with representation across a wide range of different types of cancer.

Methods

A sample of 3108 post-treatment cancer survivors completed the 2010 LIVESTRONG survey as part of a larger study of cancer survivorship. Respondents completed standardized questions regarding current and past perceived cognitive dysfunction, as well as depressive symptoms, and demographic and medical variables.

Results

Current perceived cognitive dysfunction was reported by nearly half of respondents (45.7 %), across a wide range of cancer types, with the highest prevalence among survivors of central nervous system cancers. Receiving chemotherapy and current report of depressive symptoms were both strongly associated with current perceived cognitive dysfunction.

Conclusion

These findings contribute to a growing appreciation of the high prevalence of perceived cognitive dysfunction in survivors of a wide range of cancer types and the potential interactive effect of concurrent symptoms of depression. These findings highlight a need to develop more effective means of preventing or reducing cognitive dysfunction in cancer survivors.

Implications for Cancer Survivors

Perceived cognitive dysfunction was reported in a wide range of cancer survivors. The potential interactive effect of symptoms of depression suggests the need to develop interventions targeting both cognitive dysfunction and depression to achieve improvements in cognitive functioning.

     

Comorbid conditions and health-related quality of life in long-term cancer survivors—associations with demographic and medical characteristics

Purpose

Our study provides a detailed overview of comorbid conditions and health-related quality of life of long-term cancer survivors and analyses the impact of demographic, disease- and treatment-related characteristics.

Methods

We present data obtained from 1000 survivors across mixed tumour entities 5 and 10 years after cancer diagnosis in a cross-sectional study. We analyse the prevalence of physical symptoms and health conditions via self-report and health-related quality of life using the EORTC QLQ-C30 in comparison to gender- and age-matched reference values of the general population.

Results

Cancer survivors reported on average 5 comorbidities; 23% had 7 or more comorbid conditions. Cancer survivors reported higher physical symptom burden than the population—especially fatigue, insomnia and pain. Type and prevalence of long-term and late effects differ with disease-related factors (e.g. cancer type, treatment) and characteristics of the patient. Cancer survivors also reported lower quality of life than the population, especially in everyday activities, social life, psychological well-being and financial difficulties. There was a positive association between high quality of life and a low level of morbidity.

Conclusions

The specific knowledge about physical long-term consequences for the individual types of cancer could raise awareness in health care professionals for high-risk patients and help to develop adequate prevention and survivorship-programs.

Implications for Cancer survivors

Limitations in the mental health area underlines the importance of psycho-oncological survivorship-care-plans, which go beyond the time of rehabilitation. Special attention should be given to the financial situation of patients in long-term follow-up care.

     

Cancers et environnement : explorer les comportements de recherche et les sources d’information des personnes atteintes et non atteintes d’un cancer

Aim

To explore information-seeking behaviors on links between cancers and environment.

Method

Focus groups and individual semi-structured interviews realized, respectively, with individuals without and with personal cancer experience.

Results

The majority of respondents reported informationscanning behaviors. Only half cancer patients searched for information regarding the links between cancers and environment.

Conclusion

Little information is sought on links between cancers and environment.

     

Comprehensive cancer control: promoting survivor health and wellness

Purpose

As of 2016, an estimated 15.5 million cancer survivors were living in the United States and the number of cancer survivors is expected to increase to 20.3 million by 2026. Numerous clinical studies have shown that comorbidities, such as obesity and diabetes, and unhealthy lifestyle choices, such as physical inactivity and heavy smoking, negatively influence overall quality of life and long-term survival of cancer survivors. Accordingly, survivorship programs seek to focus on overall wellness, including symptom management, monitoring for late effects of treatment, monitoring for recurrence, helping patients adapt healthy behaviors, and quality of life. This paper provides a broad overview of public health efforts to address the needs of cancer survivors.

Methods

To describe a range of examples of survivorship initiatives in comprehensive cancer control, we analyzed documents from comprehensive cancer control programs and coalitions and solicited detailed examples from several national partners.

Results

Comprehensive cancer control programs, coalitions, and partners are undertaking myriad initiatives to address cancer survivorship and building upon evidence-based interventions to promote healthy behaviors for cancer survivors across the country.

Conclusion

A coordinated public health approach to caring for the growing population of cancer survivors can help address the long-term physical, psychosocial, and economic effects of cancer treatment on cancer survivors and their families.

     

Young adult cancer survivors and work: a systematic review

Context

Sixty-three percent of cancer survivors continue to work, or return to work after treatment. Among this population, work ability and challenges encountered in the workplace by young adult cancer survivors have not been well established.

Purpose

The purposes of the study are to describe what is currently known about work-related issues for young adult cancer survivors diagnosed between ages 15 and 39, to identify gaps in the research literature, and to suggest interventions or improvements in work processes and occupational settings.

Methods

A narrative review of articles using PubMed, CINAHL, and PsychInfo was conducted without date limitations. Search phrases included young adult cancer survivors, long-term cancer survivors, young adults affected by cancer, further combined with key terms employment, work, and occupationally active. Inclusion criteria for publications were young adult cancer survivors initially diagnosed between the ages of 15 and 39, data about work or employment was presented, and articles written in English.

Results

Twenty-three publications met the inclusion criteria. Work-related issues included the potential for reduced work productivity from cancer-changed physical and cognitive functional ability that affected income, and resulted in distress. Coping style, support systems, and changing perspectives about work and life in general were also influential on career decisions among young adult cancer survivors.

Conclusions

More research is needed to study interventions to better manage health changes in young adult cancer survivors within the context of the workplace. Since financial hardship has been shown to be especially high among young cancer survivors, employment is essential to ensure payment of cancer-associated costs and continued medical care.

Implications for Cancer Survivors

While young adult cancer survivors may initially grapple with cancer-related physical and psychosocial changes that impact work productivity or influence choice of occupation, employment appears to enhance overall quality of life.

     

Chronic opioid therapy in long-term cancer survivors

Purpose

Long-term cancer survivors develop special health issues and specific needs. Chronic pain, whether the consequence of their cancer or as a side effect of treatment, is one of their most prevalent concerns.

Methods

We conducted a review of the English-language literature on long-term cancer survivorship and chronic opioid therapy, with the objective of determining the efficacy, safety and tolerability in this group of patients. Practical management recommendations are made on the basis of this review.

Results

Pain syndromes encountered in the long-term cancer survivors are diverse. Opioid receptor pathways possess complex and pleiotropic functions and continuous over-activation may lead to de novo endocrinopathies, immunosuppression, neurocognitive impairment, or cell cycle disturbances with potential clinical connotations. However, there are insufficient data to support evidence-based decision making with respect to patient selection, doses, administration, monitoring and follow-up. Data about long-term treatment effectiveness and safety are limited and often aggravated by the overlapping of several diseases prevalent among long-term cancer survivors, as well as chronic opiate-induced toxicity.

Conclusions

Chronic opioid therapy is frequent in long-term cancer survivors, and may negatively affect the immune system, and produce health problems such as endocrinopathies, osteoporosis, neurological or cardiopulmonary effects, alterations of cell cycle kinetics, abuse and addiction. This review highlights the need for specialized teams to treat chronic pain in long-term cancer survivors from an integrative perspective.

     

Screening for new primary cancers in cancer survivors compared to non-cancer controls: a systematic review and meta-analysis

Purpose

The goal of this study was to synthesize evidence comparing cancer screening receipt between cancer survivors and non-cancer controls by conducting a systematic review and meta-analysis.

Methods

We searched PubMed, EMBASE, and CINAHL databases from inception through April 1, 2010 using search terms related to cancer, survivorship, and cancer screening. Studies were included if they reported a comparison of cancer screening receipt between cancer survivors and non-cancer controls. We performed a meta-analysis on the effect of cancer survivorship on breast, cervical, colorectal, and prostate cancer screening receipt.

Results

Our search strategy identified 1,778 titles, of which 20 met our inclusion/exclusion criteria. In our meta-analyses, cancer survivors were more likely to be screened for breast, cervical, colorectal, and prostate cancer than non-cancer controls (pooled odds ratio, 1.27; 95 % CI, 1.19–1.36). We observed significant heterogeneity between studies, most of which remained unexplained after subgroup and sensitivity analyses. Important contextual factors, such as how screening programs operate, were not reported in the primary literature. Many cancer survivors (along with non-cancer controls) still did not receive cancer screening.

Conclusion

Compared with non-cancer controls, cancer survivors receive more frequent screening for new primary breast, cervical, colorectal, and prostate cancers. Future research should seek to determine whether increased uptake of cancer screening is associated with improved outcomes during cancer survivorship.

Implications for Cancer Survivors

Our systematic review and meta-analysis demonstrated that cancer survivors received more frequent screening for second primary breast, cervical, colorectal, and prostate cancers than non-cancer controls. As many cancer survivors are at an increased risk of developing a second primary cancer, future research should seek to determine whether this increased uptake of cancer screening in cancer survivors leads to improved outcomes during cancer survivorship.

     

Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society’s Study of Cancer Survivors-I

Purpose

Survivorship care plans (SCPs) provide cancer patients and health care providers with a treatment summary and outline of recommended medical follow-up. Few studies have investigated the information needs and preferred sources among long-term cancer survivors.

Methods

Cancer survivors of the ten most common cancers enrolled in the longitudinal Study of Cancer Survivors-I (SCS-I) completed a survey 9 years post-diagnosis (n?=?3138); at time of diagnosis of the SCS-I cohort, SCPs were not considered usual care. We assessed participants’ current desire and preferred sources for information across ten SCP items and evaluated factors associated with information need 9 years after diagnosis.

Results

The proportion of long-term cancer survivors endorsing a need for cancer and health information 9 years post-diagnosis ranged from 43 % (cancer screening) to 9 % (consequences of cancer on ability to work). Print media and personalized reading materials were the most preferred information sources. Younger age, higher education, race other than non-Hispanic white, later cancer stage, having breast cancer, having ≥2 comorbidities, and self-reporting poor health were associated with greater informational need (p?<?0.05).

Conclusions/Implications for Cancer Survivors

Long-term cancer survivors continue to report health information needs for most SCP items and would prefer a print format; however, level of need differs by socio-demographic and cancer characteristics. Cancer survivors who did not previously receive a SCP may still benefit from receiving SCP content, and strategies for enabling dissemination to long-term survivors warrant further investigation.

     

Barriers to follow-up care among survivors of adolescent and young adult cancer

Purpose

Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.

Methods

We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.

Results

Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.

Conclusions

Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.

Implications for cancer survivors

Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.

     

Late effects in survivors of central nervous system tumors: reports by patients and proxies

Purpose

With the 5-year survival of patients with brain tumors increasing as treatment modalities are optimized, there are a large number of brain cancer survivors who experience long-term sequelae of their treatment. Patient-reported outcomes represent an important and often unrecorded aspect of survivorship.

Methods

An Internet-based survivorship care plan tool which allowed patients or their proxies to answer a series of questions about the patient’s illness course was used to collect patient-reported toxicity data for 254 individuals who had undergone treatment for brain cancer. Demographic, treatment, and side effect profiles data were reviewed.

Results

Median age of diagnosis was 42 years, and 88 % (n?=?223) of the patients were Caucasian. Only 11.1 % (n?=?29) had previously been offered a survivorship care plan. Of the total group of brain tumor survivors, 25.4 % of responders described themselves as living with metastatic disease, while 14.5 % of responders were experiencing recurrence status post treatment. Late effects most commonly reported for all brain malignancy survivors using this tool were cognitive changes, fatigue, skin changes, hearing loss, weakness, and numbness. The incidence of late effects varied with age at time of treatment and length of time since treatment.

Conclusions

Individuals undergoing treatment for brain cancers experience a diverse array of long-term sequelae, and the majority of these patients do not have access to or familiarity with a survivorship care plan.

Implications for Cancer Survivors

Patient-focused tools to evaluate these side effects and access to survivorship plans are important for comprehensive reporting of late effects as well as implementation of survivorship care plans for long-term management of these effects. Understanding the late effects that patients experience will help providers council patients regarding expectations prior to treatment, as well as management of symptoms in the survivorship phase of care.

     

Negative information-seeking experiences of long-term prostate cancer survivors

Purpose

Many prostate cancer survivors have lasting symptoms and disease-related concerns for which they seek information. To understand survivors’ information-seeking experiences, we examined the topics of their information searches, their overall perceptions of the search, and perceptions of their health information seeking self-efficacy (i.e., confidence in their ability to obtain information). We hypothesized that negative search experiences and lower health information seeking self-efficacy would be associated with certain survivor characteristics such as non-white race, low income, and less education.

Methods

This was a retrospective study using data from the Michigan Prostate Cancer Survivor Study (state-based survey of long-term prostate cancer survivor outcomes, N?=?2499, response rate?=?38 %). Participants recalled their last search for information and reported the topics and overall experience. We conducted multivariable regression to examine the association between survivor characteristics and the information-seeking experience.

Results

Nearly a third (31.7 %) of prostate cancer survivors (median age of 76 years and 9 years since diagnosis) reported having negative information-seeking experiences when looking for information. However, only 13.4 % reported having low health information-seeking self-efficacy. Lower income and less education were both significantly associated with negative information-seeking experiences.

Conclusions

Our findings suggest that many long-term prostate cancer survivors have negative experiences when searching for information, and lower income and less education were survivor factors related to negative information-seeking experiences.

Implications for cancer survivors

We advocate for ongoing, information needs assessment at the point-of-care as the survivorship experience progresses to assess and potentially improve survivors’ quality of life.

     

Patterns of unmet needs in adolescent and young adult (AYA) cancer survivors: in their own words

Purpose

Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language.

Methods

A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software.

Results

A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges.

Conclusion

Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs.

Implications for Cancer Survivors

This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.

     

A smoking cessation and pain management program for cancer survivors

Purpose

Many cancer survivors continue to smoke. Further, most survivors also report high levels of persistent pain and smoke in response to pain. The investigators tested the feasibility, acceptability, and preliminary efficacy of a smoking cessation program paired with a pain management program for cancer survivors.

Methods

The investigators conducted a two-arm, wait-list randomized controlled pilot study in which they delivered a combined smoking cessation and pain management intervention.

Results

The investigators randomized 30 survivors (14 intervention and 16 wait-list control). Seventy-one percent of the survivors who received the intervention rated it as extremely useful (5 out of 5) in helping them quit smoking. Further, 86% would recommend the program to other survivors. Although we could not conduct inferential statistics, 14% of those in the intervention arm, compared to 6% in the control condition had biochemically validated cessation at 2-months post-randomization. Survivors in the intervention also reported less pain, had improvements in depressive symptoms, and better physical function than those in the control arm.

Conclusions

Our pilot data suggest the feasibility, acceptability, and preliminary efficacy of this approach. The next step is to conduct a large randomized controlled trial to fully test the efficacy of the intervention.

Implications for Cancer Survivors

A combined smoking cessation and pain program might help improve both issues simultaneously.

     

Interventions to improve endocrine therapy adherence in breast cancer survivors: what is the evidence?

Purpose

Endocrine therapy reduces the risk of breast cancer recurrences and mortality in hormone receptor-positive (HR+) breast cancer survivors. However, non-adherence to treatment remains a significant problem. The aim of this study was to review current literature and ongoing trials to identify interventions employed to improve adherence to adjuvant endocrine therapy (AET) in breast cancer survivors.

Methods

We searched PubMed and the National Library of Medicine registry of clinical trials using the terms “breast cancer” and “adherence” or “compliance” and “intervention” and “medication” or “endocrine therapy” or “hormone therapy” to identify published studies as well as ongoing clinical trials.

Results

Three hundred and sixty-three studies were identified; five studies met the inclusion criteria. Most studies enrolled postmenopausal women diagnosed with early stage HR+ breast cancer. Providing educational materials was the most common intervention implemented to improve adherence to one or more aromatase inhibitors. None of the studies found a significant improvement in adherence with the intervention evaluated. Twelve clinical trials investigating various interventions, mostly based on technology, to improve AET adherence were also identified.

Conclusions

Improving adherence to AET in HR+ breast cancer survivors is an urgent medical need. While newer clinical trials are overcoming some of the limitations seen with published studies, tailored interventions led by clinicians need further investigation.

Implications for cancer survivors

Our study highlights the unmet clinical need to develop and test feasible interventions to improve AET adherence in HR+ breast cancer survivors to extend their long-term survival.

     

Do we reach the patients with the most problems? Baseline data from the WebCan study among survivors of head-and-neck cancer,Denmark

Purpose

This study seeks to assess the differences in disease and socioeconomic characteristics, late effects and long-term quality of life (QoL) after head-and-neck cancer (HNC) among participants and non-participants.

Methods

Five hundred sixty recurrence-free survivors treated for HNC at least 6 months previously were invited to participate in a repeated measure, controlled intervention study of computerized Patient Reported Outcome (PRO), which is provided to treating physicians at the point of care. Two hundred sixty-six consented to participate, and 292 declined; of those who declined, 103 filled in the baseline questionnaire. Late effects and QoL were evaluated on the EORTC QLQ C-30 and EORTC QLQ H&N35 and HADS questionnaires, and an empirically derived symptom list was prepared with hospital clinicians.

Results

Participants were younger, had a higher educational level, were more likely to cohabit, less likely to smoke, used less alcohol and were more likely to have HPV than those who declined but did not differ by gender, cancer site, stage or time since diagnosis. Participants reported significantly better QoL and functioning and less severe symptoms than those who declined participation other than filling in the baseline questionnaire.

Conclusions

Late symptoms are common in HNC survivors. A wide diversity of self-reported late effects was found in this trial with participants significantly less affected than non-participants.

Implications for Cancer Survivors

Generalizable data on non-participation may aid in the interpretation of studies on HNC survivors in general and may have relevance for targeting recruitment and maintenance in rehabilitation and follow-up care, outside clinical trials.

     

Social impacts of the work loss in cancer survivors

Background

As cancer frequently occurs during the most productive years of life, our purpose was to estimate the cost of work loss of cancer survivors and develop interventions to minimize the loss.

Methods

We estimated the cost of the work loss from all cancers resulting from patients’ inpatient, outpatient, and non-treatment days. This was calculated with a new method, the product of the “employment rate coefficient × productivity coefficient,” making use of data published by the Japanese Ministries.

Results

The estimate of work loss on treatment days for all cancers was $1820.21 million in men and $939.38 million in women. In terms of disease classification, lung cancer was the largest cause in men, whereas breast cancer was the largest in women. On non-treatment days, the work losses because of gastric, colon, and lung cancers were large in men, while breast cancer was the largest in women and in total. The estimated loss for all cancers was $3685.506 million in men and $2502.565 million in women, when the product was assumed 0.5.

Conclusions

In Japan, breast cancer was considered the leading cause for cost of work loss, and the most influential cause when the product of the “employment rate coefficient × productivity coefficient” for breast cancer was assumed the same as the product for all other types of cancers. It is necessary to establish support systems for working cancer survivors.

     

Cancer survivors’ experiences with insurance,finances, and employment: results from a multisite study

Background

Cancer has significant implications on survivors’ insurance coverage, financial status, and employment. We aimed to examine how these outcomes vary for survivors of different cancer types.

Methods

Using the Cancer Survivorship Supplement of the Medical Expenditures Panel Survey (MEPS), in 2013, we surveyed survivors of five common cancers who were diagnosed during 2003–2008 and were continuously enrolled in one of three health plans in Massachusetts, Colorado, and Washington State.

Results

Among 615 eligible respondents, 96 % reported having health insurance at the time of or since diagnosis; of those, few reported barriers in coverage to visit doctors or facilities of their choice. Approximately 15 % reported experiencing financial hardships due to cancer. Of the 334 who responded as having been employed at the time of or since diagnosis, approximately 25 % reported that they or their spouses remained at their jobs due to concerns about losing medical insurance. Further, 63 % reported making changes in their jobs or careers (e.g., took extended time off, worked part time, or declined promotion) due to cancer, and 42 % reported that cancer interfered with their physical and/or mental tasks at work or reduced productivity. Negative employment and financial implications were most common among those with lung, breast, and colorectal cancer, and those diagnosed before age 65.

Conclusions

In this insured population, few experienced restrictions in cancer care coverage, though maintaining health insurance often drove employment decisions. Significant negative effects on finances and employment were observed among specific cancer types and younger survivors.

Implications for Cancer Survivors

Our study findings emphasize a need to identify ways of supporting survivors and provide tailored resources to reduce the untoward financial and work-related implications of cancer.

     

The right to be forgotten: a change in access to insurance and loans after childhood cancer?

Purpose

Access to insurance for a loan or a mortgage is an important issue for childhood cancer survivors. The aim of this study was to describe difficulties experienced by adult survivors.

Methods

A total of 1920 survivors treated before the age of 18 in five French cancer centers responded to a questionnaire in 2010. Survivors who had tried to obtain a loan were asked if they had experienced difficulties, which were defined as experiencing rejection, higher premiums, or exclusions. The questionnaire investigated health problems related to the circulatory, respiratory, digestive, urinary, endocrine, hormonal, and nervous systems. Second tumors, diabetes mellitus, cardiac disease, and stroke were ascertained from a physician’s report or medical records. Multivariable analyses were conducted to identify the characteristics of survivors reporting difficulties.

Results

Difficulties were experienced by 10.4% of those who had tried to obtain a small loan (n = 787) and by 30.1% of those who had tried to obtain a home loan (n = 909). Disclosure of childhood cancer to the insurer and amputation surgery were negatively associated with insurance accessibility, even when controlling for age, gender, education, health-related unemployment, familial situation, and severe or life-threatening conditions such as cardiovascular diseases, second cancers, or diabetes.

Conclusion

This study showed that the financial burden of cancer can extend decades after diagnosis.

Implications for Cancer Survivors

Thanks to a 2016 law, French cancer survivors no longer have to disclose their cancer to insurers after a fixed number of years. This law will probably lessen the socioeconomic burden of cancer.