Barriers and solutions of long-term follow up of childhood cancer survivors in Turkey: A questionaire survey.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e22020-e22020 ◽  
Author(s):  
Nurdan Tacyildiz ◽  
Sonay incesoy Ozdemir ◽  
Emel Cabi Unal ◽  
Handan Dincaslan ◽  
Gulsan Yavuz
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Questionnaire Survey ◽  
Childhood Cancer Survivors ◽  
Care Providers ◽  
National Guidelines ◽  
Pediatric Cancer Survivors ◽  
Pediatric Oncologist

e22020 Background: The population of childhood cancer survivors has grown with 80 % cure rates. Our aim was to establish the barriers of longterm followup (LTFU) in Turkey. Methods: An e-mail questionnaire survey has been sent to 33 pediatric oncology centers (POC). Questionnaire compossed of 3 sections: 1- Description of the center; yearly new patients number, follow-up period, etc. 2- Methods for follow-up of late effects Content of provided information to the families related cancer treatment & side effects & healthy life style, missing parts of LTFU 3- Transition problems of survivors to adult survivorship programs. Educational problems of Hematology/Oncology Fellows (HOF) Suggestions for improvement of LTFU. Results: 21 of 33 centers (63%) responded the questionnaire. Experience as POC: 2-50 years (median: 23). New patients / each year: 8 - 300 (median: 68). Most of the centers accepting patients up to 18 years, only 4 center providing lifelong LTFU. No Available Risk Adapted LTFU guideline at 21 center. LTFU provided by pediatric oncologist at the pediatric oncology outpatient clinic with transition problems to adult clinic. All centers were following Cardiotoxicity, Secondary cancer,and Kidney toxicity with no problem Barriers of Turkish POC for LTFU of Pediatric Cancer Survivors were: Lack of enough care providers 66%, lack of time 57%, transportation problems 57 % ,lack of providing knowledge to patients 38 %. Although 80 % of the centers have fellows for HOF, not enough edication on survivorship 66%, due to lack of survivorship clinic ( 80%), busy working schedules. Conclusions: Questionnaire survey was able to reach 2/3 the pediatric oncology centers that were located in 8 cities and following most of the pediatric oncology patients in Turkey Mostly POCs do not provide enough LTFU. All centers agree on national guidelines for LTFU. [Table: see text]

scholarly journals Follow-Up Programs for Childhood Cancer Survivors in Europe: A Questionnaire Survey

PLoS ONE ◽  
2012 ◽  
Vol 7 (12) ◽  
pp. e53201 ◽  
Author(s):  
Stefan Essig ◽  
Roderick Skinner ◽  
Nicolas X. von der Weid ◽  
Claudia E. Kuehni ◽  
Gisela Michel
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Questionnaire Survey ◽  
Childhood Cancer Survivors

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.

scholarly journals Ultrasound Screening for Thyroid Carcinoma in Childhood Cancer Survivors: A Case Series

2008 ◽  
Vol 93 (12) ◽  
pp. 4840-4843 ◽  
Author(s):  
Enrico Brignardello ◽  
Andrea Corrias ◽  
Giuseppe Isolato ◽  
Nicola Palestini ◽  
Luca Cordero di Montezemolo ◽  
...  
Keyword(s):  
Thyroid Carcinoma ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Outcome Measure ◽  
Childhood Cancer Survivors ◽  
Ultrasound Screening ◽  
Thyroid Ultrasound ◽  
Main Outcome Measure ◽  
Head Neck

Context: Childhood cancer survivors need regular monitoring into young adulthood and beyond, because they are at risk for developing late-onset complications of cancer therapy, including second malignancies. Objective: This study focuses on the use of thyroid ultrasound to screen for thyroid carcinoma in a population of childhood cancer survivors. Patients: A total of 129 subjects who had received radiotherapy to the head, neck, or upper thorax for a pediatric cancer were studied in the setting of a long-term follow-up unit. Design: Thyroid ultrasound usually began 5 yr after radiotherapy and was repeated every third year, if negative. Median follow-up time since childhood cancer diagnosis was 15.8 yr (range 6.1–34.8 yr). Solid thyroid nodules were found in 35 patients. Fine-needle aspiration was performed in 19 patients, of which 14 had nodules above 1 cm. Main Outcome Measure: The main outcome measure was the finding of not palpable thyroid cancers. Results: Cytological examination of specimens diagnosed papillary carcinoma in five patients who underwent surgery. The cytological diagnosis of papillary thyroid carcinoma was confirmed in all cases by histological examination. Notably, only two of these patients had palpable nodules; the other three were smaller than 1 cm and were detected only by ultrasound. However, histological examination showed nodal metastases in two of these. Conclusions: Although ultrasound screening for thyroid cancer in the general population is not cost effective and could lead to unnecessary surgery, due to false positives, we believe that in childhood cancer survivors who received radiotherapy involving the head, neck, or upper thorax, it would be worthwhile.

scholarly journals Fear of progression in parents of childhood cancer survivors: prevalence and associated factors

2021 ◽  
Author(s):  
Mona L. Peikert ◽  
Laura Inhestern ◽  
Konstantin A. Krauth ◽  
Gabriele Escherich ◽  
Stefan Rutkowski ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Pediatric Cancer ◽  
Coping Style ◽  
Associated Factors ◽  
Childhood Cancer Survivors ◽  
Cns Tumor ◽  
Mothers And Fathers ◽  
Fear Of Progression ◽  
Pediatric Cancer Survivors

Abstract Purpose Recent research demonstrated that fear of progression (FoP) is a major burden for adult cancer survivors. However, knowledge on FoP in parents of childhood cancer survivors is scarce. This study aimed to determine the proportion of parents who show dysfunctional levels of FoP, to investigate gender differences, and to examine factors associated with FoP in mothers and fathers. Methods Five hundred sixteen parents of pediatric cancer survivors (aged 0–17 years at diagnosis of leukemia or central nervous system (CNS) tumor) were consecutively recruited after the end of intensive cancer treatment. We conducted hierarchical multiple regression analyses for mothers and fathers and integrated parent-, patient-, and family-related factors in the models. Results Significantly more mothers (54%) than fathers (41%) suffered from dysfunctional levels of FoP. Maternal FoP was significantly associated with depression, a medical coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and lower family functioning (adjusted R2 = .30, p < .001). Paternal FoP was significantly associated with a lower level of education, depression, a family coping style, a child diagnosed with a CNS tumor in comparison to leukemia, and fewer siblings (adjusted R2 = .48, p < .001). Conclusions FoP represents a great burden for parents of pediatric cancer survivors. We identified associated factors of parental FoP. Some of these factors can be targeted by health care professionals within psychosocial interventions and others can provide an indication for an increased risk for higher levels of FoP. Implications for Cancer Survivors Psychosocial support targeting FoP in parents of childhood cancer survivors is highly indicated.

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.

The views of European clinicians on guidelines for long-term follow-up of childhood cancer survivors

2014 ◽  
Vol 62 (2) ◽  
pp. 322-328 ◽  
Author(s):  
Morven C. Brown ◽  
Gillian A. Levitt ◽  
Eva Frey ◽  
Edit Bárdi ◽  
Riccardo Haupt ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Long Term Follow Up

The current status of follow-up services for childhood cancer survivors, are we meeting goals and expectations: A report from the consortium for New England childhood cancer survivors

2011 ◽  
Vol 57 (6) ◽  
pp. 1062-1066 ◽  
Author(s):  
Lisa B. Kenney ◽  
Heather Bradeen ◽  
Nina S. Kadan-Lottick ◽  
Lisa Diller ◽  
Alan Homans ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
New England ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Current Status

Artificial Intelligence–Assisted Prediction of Late-Onset Cardiomyopathy Among Childhood Cancer Survivors

2021 ◽  
pp. 459-468
Author(s):  
Fatma Güntürkün ◽  
Oguz Akbilgic ◽  
Robert L. Davis ◽  
Gregory T. Armstrong ◽  
Rebecca M. Howell ◽  
...  
Keyword(s):  
Artificial Intelligence ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Clinical Features ◽  
Cross Validation ◽  
Childhood Cancer Survivors ◽  
Model Based ◽  
Extreme Gradient Boosting ◽  
The Cross

PURPOSE Early identification of childhood cancer survivors at high risk for treatment-related cardiomyopathy may improve outcomes by enabling intervention before development of heart failure. We implemented artificial intelligence (AI) methods using the Children's Oncology Group guideline–recommended baseline ECG to predict cardiomyopathy. MATERIAL AND METHODS Seven AI and signal processing methods were applied to 10-second 12-lead ECGs obtained on 1,217 adult survivors of childhood cancer prospectively followed in the St Jude Lifetime Cohort (SJLIFE) study. Clinical and echocardiographic assessment of cardiac function was performed at initial and follow-up SJLIFE visits. Cardiomyopathy was defined as an ejection fraction < 50% or an absolute drop from baseline ≥ 10%. Genetic algorithm was used for feature selection, and extreme gradient boosting was applied to predict cardiomyopathy during the follow-up period. Model performance was evaluated by five-fold stratified cross-validation. RESULTS The median age at baseline SJLIFE evaluation was 31.7 years (range 18.4-66.4), and the time between baseline and follow-up evaluations was 5.2 years (0.5-9.5). Two thirds (67.1%) of patients were exposed to chest radiation, and 76.6% to anthracycline chemotherapy. One hundred seventeen (9.6%) patients developed cardiomyopathy during follow-up. In the model based solely on ECG features, the cross-validation area under the curve (AUC) was 0.87 (95% CI, 0.83 to 0.90), whereas the model based on clinical features had an AUC of 0.69 (95% CI, 0.64 to 0.74). In the model based on ECG and clinical features, the cross-validation AUC was 0.89 (95% CI, 0.86 to 0.91), with a sensitivity of 78% and a specificity of 81%. CONCLUSION AI using ECG data may assist in the identification of childhood cancer survivors at increased risk for developing future cardiomyopathy.

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