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.

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

2020 ◽  
Author(s):  
Helena 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 Impact on health awareness in adult childhood cancer survivors after perceiving their digital treatment summary and follow-up recommendations.

2020 ◽  
Author(s):  
Helena Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Focus Group Interviews ◽  
Treatment History ◽  
Group Interviews ◽  
Treatment Summary

Abstract Background: The survival rate after childhood cancer has improved and today more than 80% of patients with a paediatric malignancy will become 5-year survivors. Two thirds of CCS will experience one or several late complications due to cancer treatment, resulting in excess morbidity and mortality. These complications require regular follow-up care to preserve health, improve quality of life and increase empowerment. In addition, the survivors need education about their diagnosis, treatment history and follow-up plans, including access to their individual cancer treatment summary. This study aims to illuminate childhood cancer survivors’ health awareness after perceiving their personalized digital treatment summary and follow-up recommendations. Methods: To assess the medical background, health related survivorship experiences, and e health literacy, 16 survivors from southern Sweden with varied childhood cancer diagnoses responded to a survey before and after perceiving their digital treatment summary. Their overall experiences were assessed using focus group interviews. The transcribed data was analyzed with conventional qualitative content analysis. Results: The results of the survey show that the self-reported medical problems as well as the perceived survivorship experiences largely reflected what is known about childhood cancer survivors in general. Of the considered medical specialists, the primary care physician was the most frequently visited specialist (68.8%). The E health literacy correlated with level of education, but not length of survival and was not linked to CNS radiotherapy. The survivors graded the treatment summary 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: In conclusion, childhood cancer survivors with a broad representation of primary diagnoses, were impacted by perceiving their digital treatment history and follow up recommendations. High E health literacy was not associated with treatment features but with educational level and sex. Perceiving the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. Digital treatment summaries delivered by knowledgeable health care professionals could aid continuous health surveillance and promote the patient-health care-shared responsibility of medical follow up after childhood cancer.

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.

Health-related unemployment trends among survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS).

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10048-10048
Author(s):  
Neel S. Bhatt ◽  
Pamela Goodman ◽  
Wendy M. Leisenring ◽  
Gregory T. Armstrong ◽  
Eric Jessen Chow ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Chronic Health Conditions ◽  
Health Conditions ◽  
Health Related ◽  
Race Ethnicity ◽  
The Impact ◽  
Significant Health

10048 Background: The impact of treatment era and chronic health conditions on health-related unemployment among childhood cancer survivors has not been studied. Methods: Childhood cancer survivors (age ≥25 years) enrolled in the CCSS (3,420 diagnosed in the 1970s, 3,564 in the 1980s, and 2,853 in the 1990s) were matched 1:5 on sex, race/ethnicity, census bureau division, age, and year of survey to the Behavioral Risk Factor Surveillance System (BRFSS), a nationally representative population. Among survivors, health-related unemployment was defined as self-reported unemployment due to illness/disability and for BRFSS participants as self-reported inability to work. To standardize follow-up, health-related unemployment was assessed either in 2002-05 or 2014-16 for both cohorts. Sex stratified standardized prevalence ratio (SPR) and relative SPR (rSPR) with 95% confidence intervals (CI) for health-related unemployment were estimated using multivariable generalized linear models, with BRFSS background rates to assess the impact of treatment era and moderate to severe health conditions (per the Common Terminology Criteria for Adverse Events). Results: Prevalence of health-related unemployment in survivors (median age 9 years [range 0-20] at diagnosis and 33 years [25-54] at follow-up) was significantly higher compared to BRFSS participants (females: 11.3% vs 3.7%; SPR 3.0, 95% CI 2.7-3.3; males: 10.5% vs 3.0%; SPR 3.5, 95% CI 3.1-3.9). Health-related unemployment risks declined among survivors in more recent decades (ptrend< 0.001) for females: 1970s SPR 3.8, 95% CI 3.2-4.5, 1980s SPR 2.9, 95% CI 2.5-3.5, 1990s SPR 2.5, 95% CI 2.1-3.0; and males: 1970s SPR 3.6, 95% CI 2.9-4.4, 1980s SPR 3.8, 95% CI 3.1-4.7, 1990s SPR 3.0, 95% CI 2.5-3.7. Among survivors, multivariable models identified associations between presence of specific health conditions and elevated health-related unemployment (Table) adjusting for all statistically significant health conditions, race/ethnicity, treatment era, age at survey, and diagnosis. Among females, rSPR for endocrine conditions differed between 1970s and 1990s (interaction p = 0.04); fewer significant health conditions remained in the final model for males. Conclusions: While prevalence for health-related unemployment has declined over time, childhood cancer survivors remain at higher risk compared to the general population. These elevated risks are associated with chronic health conditions and affect female survivors more than male survivors.[Table: see text]

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.

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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