scholarly journals Identifying and exploring the self-management strategies used by childhood cancer survivors

2020 ◽  
Author(s):  
Morven C. Brown ◽  
Anna Haste ◽  
Vera Araújo-Soares ◽  
Roderick Skinner ◽  
Linda Sharp
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Management Strategy ◽  
Management Strategies ◽  
Childhood Cancer Survivors ◽  
Health Problems ◽  
Self Management ◽  
Increased Risk ◽  
Strategy Types

Abstract Purpose Childhood cancer survivors (CCSs) are at increased risk of chronic health problems. Effective self-management could help CCSs cope with the challenges that accompany survivorship and reduce their risk of developing further health problems. There is little evidence about the extent to which CCSs engage with self-management and the specific strategies they use. This study aimed to identify and explore the strategies that CCSs use to manage the consequences of cancer. Methods Twenty-four CCSs were recruited via follow-up clinics. Participants completed a semi-structured interview which was audio-recorded and transcribed. Directed content analysis was used to identify self-reported self-management strategies and categorise them into main self-management types. Results CCSs reported 118 specific self-management strategies which fell under 20 main self-management strategy types. All CCSs reported using several main self-management strategy types and specific self-management strategies. Main strategy types used by all CCSs were “adopting a healthy lifestyle”, “self-motivating”, “using support”, “reasoned decision-making” and “creating a healthy environment”. The most common specific self-management strategies were “receiving family support” (n = 20) and “attending follow-up and screening appointments” (n = 20). Conclusions This is the first study which has enabled CCSs to self-report the numerous strategies they employ to look after their health and well-being, contributing to a more comprehensive picture of self-management in CCSs. Implications for Cancer Survivors These findings may increase healthcare professionals’ awareness of the many ways in which CCSs manage their health and is a valuable first step in the development of a supported self-management intervention for CCSs in follow-up care.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

scholarly journals Increased risk of cardiac ischaemia in a pan-European cohort of 36 205 childhood cancer survivors: a PanCareSurFup study

Heart ◽  
2020 ◽  
Vol 107 (1) ◽  
pp. 33-40 ◽  
Author(s):  
Elizabeth Arnoldina Maria Feijen ◽  
Elvira C van Dalen ◽  
Heleen J H van der Pal ◽  
Raoul C Reulen ◽  
David L Winter ◽  
...  
Keyword(s):  
Risk Factors ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cumulative Incidence ◽  
Cox Regression ◽  
Childhood Cancer Survivors ◽  
Cardiac Ischaemia ◽  
Number Of Patients ◽  
Increased Risk

ObjectiveIn this report, we determine the cumulative incidence of symptomatic cardiac ischaemia and its risk factors among European 5-year childhood cancer survivors (CCS) participating in the PanCareSurFup study.MethodsEight data providers (France, Hungary, Italy (two cohorts), the Netherlands, Slovenia, Switzerland and the UK) participating in PanCareSurFup ascertained and validated symptomatic cardiac events among their 36 205 eligible CCS. Data on symptomatic cardiac ischaemia were graded according to the Criteria for Adverse Events V.3.0 (grade 3–5). We calculated cumulative incidences, both overall and for different subgroups based on treatment and malignancy, and used multivariable Cox regression to analyse risk factors.ResultsOverall, 302 out of the 36 205 CCS developed symptomatic cardiac ischaemia during follow-up (median follow-up time after primary cancer diagnosis: 23.0 years). The cumulative incidence by age 60 was 5.4% (95% CI 4.6% to 6.2%). Men (7.1% (95% CI 5.8 to 8.4)) had higher rates than women (3.4% (95% CI 2.4 to 4.4)) (p<0.0001). Of importance is that a significant number of patients (41/302) were affected as teens or young adults (14–30 years). Treatment with radiotherapy/chemotherapy conferred twofold risk (95% CI 1.5 to 3.0) and cases in these patients appeared earlier than in CCS without treatment/surgery only (15% vs 3% prior to age 30 years, respectively (p=0.04)).ConclusionsIn this very large European childhood cancer cohort, we found that by age 60 years, 1 in 18 CCS will develop a severe, life-threatening or fatal cardiac ischaemia, especially in lymphoma survivors and CCS treated with radiotherapy and chemotherapy increases the risk significantly.

Predictors of declining levels of physical activity among adult survivors of childhood cancer.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 10062-10062
Author(s):  
Carmen L Wilson ◽  
Wendy M. Leisenring ◽  
Kevin C. Oeffinger ◽  
Paul C. Nathan ◽  
Karen Wasilewski-Masker ◽  
...  
Keyword(s):  
Physical Activity ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Adult Survivors ◽  
Childhood Cancer Survivors ◽  
Activity Levels ◽  
Increased Risk ◽  
Study Interval ◽  
Grade 3

10062 Background: Childhood cancer survivors are at increased risk of developing obesity-related diseases, yet many survivors do not meet established guidelines for physical activity. We aimed to identify demographic and health-related predictors of declining physical activity among participants in the Childhood Cancer Survivor Study (CCSS). Methods: Analyses included 6617 >5 year childhood cancer survivors diagnosed between 1970-86 who completed the CCSS 2003 and 2007 follow-up questionnaires, and1992 siblings. Participants were classified as active if they reported engaging in any physical activity other than their regular job duties in the prior month. Generalized linear models using a log-link and Poisson distribution were used to compare participants whose physical activity levels fell from active to inactive over the study interval to those who remained active or whose activity levels improved. In addition to analyses comparing survivors to siblings, selected demographic factors and chronic conditions (CTCAE v4.0 Grade 3 and 4) were evaluated as risk factors in an analysis among survivors alone. Risk ratios (RR) with 95% confidence intervals (CI) are reported. Results: The median age at last follow-up among survivors and siblings was 36 (range: 21-58) and 38 (range: 21-62) years, respectively. Approximately 14% of survivors and 9% of siblings reported declines in physical activity across the study interval (p<0.01). Factors that predicted declining levels of physical activity included BMI≥30kg/m2 (RR=1.4, 95% CI=1.3-1.7, p<0.01), BMI<18.5kg/m2 (RR=1.4, 95% CI=1.0-1.8, p=0.03), not completing high school (RR=1.7, 95% CI=1.2-2.2, p<0.01), and black race (RR=1.6, 95% CI=1.2-2.1, p<0.01). In a model limited to survivors, declining levels of physical activity were more likely among survivors who reported the presence of Grade 3 or 4 neurological (RR=1.5, 95% CI=1.2-1.8, p<0.01) or cardiac conditions (RR=1.5, 95% CI=1.3-1.9, p<0.01). Conclusions: Childhood cancer survivors are at increased risk of becoming inactive over time compared to siblings. Interventions targeting survivors at highest risk of decline are required to reduce the risk of chronic diseases associated with an inactive lifestyle.

scholarly journals Incidence of second neoplasm in childhood cancer survivors treated with GH: an analysis of GeNeSIS and HypoCCS

2013 ◽  
Vol 168 (4) ◽  
pp. 565-573 ◽  
Author(s):  
Whitney W Woodmansee ◽  
Alan G Zimmermann ◽  
Christopher J Child ◽  
Qi Rong ◽  
Eva Marie Erfurth ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Observational Studies ◽  
Childhood Cancer Survivors ◽  
Second Neoplasm ◽  
Primary Malignancy ◽  
Gh Treatment ◽  
Gh Replacement ◽  
Increased Risk

ObjectiveChildhood cancer survivors are commonly treated with GH for GH deficiency that develops either as a result of primary malignancy or its treatment. One study – the Childhood Cancer Survivor Study (CCSS) – demonstrated increased risk of second neoplasm (SN) in GH-treated childhood cancer survivors compared with non-GH treated, after adjusting for key risk factors. We assessed the incidence of SN in GH-treated childhood cancer survivors in outpatient observational studies of GH replacement.DesignRetrospective analysis of two prospective cohort studies that collected data on safety of GH replacement as prescribed in clinical practice.MethodsChildhood cancer survivors enrolled in Eli Lilly and Company's pediatric (Genetics and Neuroendocrinology of Short Stature International Study (GeNeSIS)) and adult (Hypopituitary Control and Complications Study (HypoCCS)) observational studies of GH treatment were assessed for incidence of SN.ResultsThe percentage of childhood cancer survivors treated with GH who developed a SN was 3.8% in pediatric GeNeSIS participants and 6.0% in adult HypoCCS participants. The estimated cumulative incidence of SN at 5 years of follow-up in these studies was 6.2 and 4.8% respectively.ConclusionsThe incidence of SN in GeNeSIS and HypoCCS GH-treated participants is similar to the published literature and is thus consistent with increased risk of SN in childhood cancer survivors treated with GH. As follow-up times were relatively short (<3 years), longer observation is recommended. Nevertheless, clinicians should be alerted to the possibility of increased risk of SN in childhood cancer survivors treated with GH and continue chronic surveillance.

scholarly journals Establishing a Childhood Cancer Survivorship Program in Rwanda

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 87s-87s
Author(s):  
F. Rubagumya ◽  
L. Greenberg ◽  
A. Manirakiza ◽  
A. Kanyamuhunga ◽  
A. Manirakiza ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivorship ◽  
Childhood Cancer Survivors ◽  
Lessons Learned ◽  
Increased Risk ◽  
Childhood Cancer Survivorship ◽  
Set Up

Background: Over 80% of children diagnosed with cancer survive in high-income countries (HICs). While the survival rate remains poor in low- and middle-income countries (LMICs) such as Rwanda, a growing number of children with cancer are surviving to adulthood. These children and young adults will face an increased risk of secondary cancers and late complications from their curative treatment. Cancer centers in HICs have established Long Term Survivorship (LTS) programs to cater for childhood cancer survivors and to capture these complications and/or recurrences at an early stage. They also address the more complex psychological and social aspects of surviving cancer in childhood. Aims: To develop an LTS program in Rwanda, initial training will take place in Botswana where a pediatric hematology-oncology (PHO) program was established at the national referral hospital, Princess Marina Hospital (PMH), in 2007. This training program will allow successful methods and lessons learned from the development of an LTS program in Botswana to establish a similar program in Rwanda with ongoing bidirectional collaboration. Methods: The Texas Children's Cancer and Hematology Centers (TXCH) Global Hematology-Oncology Pediatric Excellence (HOPE) program in Botswana is the only provider of PHO care in the country, provided at PMH, through a partnership with the Botswana government. The program has over 130 childhood cancer survivors in active follow-up. A one-month bench-marking visit will be conducted. During this period, Dr. Rubagumya will spend time with the medical director of the program learning how the LTS program was established and current operations. He will spend time with clinicians during consultations to understand the scope of tests requested, frequently asked questions across all parties: clinicians, survivors and/or caretakers and use of technology to aid in the management of LTS patients. Focused interviews of clinicians, patients, caregiver and administration will be conducted to further understand the challenges of the pediatric cancer survivors and the development of an LTS program in an LMIC face. Results: After this month visit, critical areas of knowledge transfer will include: how to set up a childhood cancer survivorship programs; methods for sustainable operation of a childhood cancer LTS program, and how to help childhood cancer survivors navigate health care systems. A similar model will be established in Rwanda. Long-term mentorship with Botswana colleagues will help to build Rwanda's first LTS. Conclusion: Survivors involved in dedicated LTS follow-up care have better health outcomes. This indicates the need for life long survivorship care. There is a dearth of data on how to establish and operate a childhood cancer LTS program in LMIC settings. Lessons learned through this program will guide us on how to set up such program in Rwanda.

scholarly journals Childhood Cancer and the Risk of ESKD

2020 ◽  
pp. ASN.2020071002
Author(s):  
Ronit Calderon-Margalit ◽  
Oren Pleniceanu ◽  
Dorit Tzur ◽  
Michal Stern-Zimmer ◽  
Arnon Afek ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Military Service ◽  
Benign Tumor ◽  
Childhood Cancer Survivors ◽  
Cox Proportional Hazards ◽  
Benign Tumors ◽  
Increased Risk ◽  
History Of

BackgroundIncreasing cancer incidence among children alongside improved treatments has resulted in a growing number of pediatric cancer survivors. Despite childhood cancer survivors’ exposure to various factors that compromise kidney function, few studies have investigated the association between childhood cancer and future kidney disease.MethodsTo assess the risk of ESKD among childhood cancer survivors, we conducted a nationwide, population-based, retrospective cohort study that encompassed all Israeli adolescents evaluated for mandatory military service from 1967 to 1997. After obtaining detailed histories, we divided the cohort into three groups: participants without a history of tumors, those with a history of a benign tumor (nonmalignant tumor with functional impairment), and those with a history of malignancy (excluding kidney cancer). This database was linked to the Israeli ESKD registry to identify incident ESKD cases. We used Cox proportional hazards models to estimate the hazard ratio (HR) of ESKD.ResultsOf the 1,468,600 participants in the cohort, 1,444,345 had no history of tumors, 23,282 had a history of a benign tumor, and 973 had a history of malignancy. During a mean follow-up of 30.3 years, 2416 (0.2%) participants without a history of tumors developed ESKD. Although a history of benign tumors was not associated with an increased ESKD risk, participants with a history of malignancy exhibited a substantially elevated risk for ESKD compared with participants lacking a history of tumors, after controlling for age, sex, enrollment period, and paternal origin (adjusted HR, 3.2; 95% confidence interval, 1.3 to 7.7).ConclusionsChildhood cancer is associated with an increased risk for ESKD, suggesting the need for tighter and longer nephrological follow-up.

Long-Term Risk of Venous Thromboembolism in Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study

2018 ◽  
Vol 36 (31) ◽  
pp. 3144-3151 ◽  
Author(s):  
Arin L. Madenci ◽  
Brent R. Weil ◽  
Qi Liu ◽  
Andrew J. Murphy ◽  
Todd M. Gibson ◽  
...  
Keyword(s):  
Risk Factors ◽  
Venous Thromboembolism ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Cancer Survivor ◽  
Childhood Cancer Survivors ◽  
Increased Risk ◽  
Childhood Cancer Survivor Study ◽  
Survivors Of Childhood Cancer

Purpose To estimate the incidence of late-occurring venous thromboembolism (VTE) among survivors of childhood cancer and to identify risk factors for VTE to facilitate diagnosis and prevention. Methods The Childhood Cancer Survivor Study is a multi-institutional cohort of 24,355 5-year childhood cancer survivors (diagnosed between 1970 and 1999; median age at last follow-up, 28.7 years [range, 5.6 to 58.9 years]; median follow-up since diagnosis, 21.3 years [range, 5.0 to 39.2 years]) and 5,051 sibling participants. The primary end point was self-reported late (≥ 5 years after cancer diagnosis) VTE. Rate ratios (RRs) were estimated with multivariable piecewise exponential models. Results Late VTE incidence among survivors and siblings was 1.1 and 0.5 events per 1,000 person-years, respectively (RR, 2.2; 95% CI, 1.7 to 2.8), with 2.5 excess events per 100 survivors over 35 years. Among survivors, risk factors for VTE were female sex (RR, 1.3; 95% CI, 1.1 to 1.6), cisplatin (reference none; 1 to 199 mg/m2: RR, 3.0 [95% CI, 1.4 to 6.5]; 200 to 399 mg/m2: RR, 1.9 [95% CI, 1.0 to 3.6]; ≥ 400 mg/m2: RR, 2.0 [95% CI, 1.2 to 3.3]), l-asparaginase (RR, 1.3; 95% CI, 1.0 to 1.7), obesity or underweight (reference body mass index [BMI] 18.5 to 24.9 kg/m2; BMI ≥ 30.0 kg/m2: RR, 1.6 [95% CI, 1.2 to 2.0]; BMI < 18.5 kg/m2: RR, 2.4 [95% CI, 1.7 to 3.4]), and late cancer recurrence or subsequent malignant neoplasm (RR, 4.6; 95% CI, 3.6 to 5.8). Among lower-extremity osteosarcoma survivors, limb salvage (reference amputation; RR, 3.1; 95% CI, 1.2 to 7.5) and cisplatin 200 to 399 or ≥ 400 mg/m2 (reference none; RR, 4.0 [95% CI, 1.1 to 14.6] and 2.9 [95% CI, 1.1 to 8.0], respectively) were independently associated with late VTE. VTE was associated with increased risk for nonexternal cause late mortality (RR, 1.9; 95% CI, 1.6 to 2.3). Conclusion Childhood cancer survivors are at increased risk for VTE across their lifespan and a diagnosis of VTE increases mortality risk. Interventions that target potentially modifiable comorbidities, such as obesity, warrant consideration, with prophylaxis for high-risk survivors, including those treated with cisplatin and limb-sparing approaches.

scholarly journals Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Helena M. Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n = 70). A representative sample of primary diagnoses were invited (n = 28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p = 0.003, CI: 3.9–14.6) and sex (p = 0.022, CI: − 13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

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