scholarly journals Re-Engage: A Novel Nurse-Led Program for Survivors of Childhood Cancer Who Are Disengaged From Cancer-Related Care

2020 ◽  
Vol 18 (8) ◽  
pp. 1067-1074
Author(s):  
Christina Signorelli ◽  
Claire E. Wakefield ◽  
Karen A. Johnston ◽  
Joanna E. Fardell ◽  
Jordana K McLoone ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Self Efficacy ◽  
Empirical Work ◽  
Trial Registration ◽  
Survivorship Care ◽  
Physical And Mental Health ◽  
Patient Reported ◽  
Health Related ◽  
Survivors Of Childhood Cancer

Background: Survivors of childhood cancer often experience treatment-related chronic health conditions. Survivorship care improves survivors’ physical and mental health, yet many are disengaged from care. Innovative models of care are necessary to overcome patient-reported barriers to accessing survivorship care and to maximize survivors’ health. Methods: We piloted a novel survivorship program, called “Re-engage,” a distance-delivered, nurse-led intervention aiming to engage, educate, and empower survivors not receiving any cancer-related care. Re-engage involves a nurse-led consultation delivered via telephone/online to establish survivors’ medical history and needs. Participants completed questionnaires at baseline, 1 month postintervention, and 6-month follow-up. Results: A total of 27 survivors who had not accessed survivorship care in the last 2 years participated (median age, 31 years; interquartile range [IQR], 27–39 years); of which, 82% were at high-risk for treatment-related complications. Participation in Re-engage was high (75%) and there was no attrition once survivors enrolled. At 1 month postintervention, 92% of survivors reported that Re-engage was “beneficial,” which all survivors reported at 6-month follow-up. Survivors’ overall satisfaction with their care increased from 52% before Re-engage to 84% at 1 month postintervention. Survivors’ mean self-efficacy scores remained similar from baseline to 1 month postintervention (b = −0.33, 95% CI, −1.31 to 0.65), but increased significantly from baseline to 6-month follow-up (b = 1.64, 95% CI, 0.28–3.00). At 6-month follow-up, 73% of survivors showed an increase in health-related self-efficacy compared with baseline. Conclusions: Re-engage is a highly acceptable and feasible intervention and promotes health-related self-efficacy, which is integral to survivors being advocates for their own health. Further empirical work is needed to evaluate the long-term efficacy of Re-engage.Trial registration: ACTRN12618000194268

Patient-generated online survivorship care plans for adult survivors of childhood cancer: Feasibility and patient preferences.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 54-54
Author(s):  
Dava Szalda ◽  
Marilyn M. Schapira ◽  
Lisa Schwartz ◽  
Esther Kim ◽  
Carolyn Vachani ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Pediatric Cancer ◽  
Online Survey ◽  
Adult Survivors ◽  
Survivorship Care Plans ◽  
Survivorship Care ◽  
Care Plans ◽  
Survivors Of Childhood Cancer

54 Background: With improvements in pediatric cancer treatment, the number of childhood cancer survivors is growing rapidly. Survivorship care plans (SCPs) can provide survivors with necessary information and resources to engage in risk-based follow-up care. Online patient motivated SCPs are promising for adult survivors of childhood cancer with multiple care transitions and the need for self-management outside clinical encounters. Methods: An existing online SCP generator (OncoLife) was adapted to create Smart Adult Living After Childhood Cancer plans for survivors of pediatric Acute Lymphoblastic Lymphoma (ALL) and Hodgkin’s Lymphoma (HL) by incorporating Children’s Oncology Group Long Term Follow-Up Guidelines into existing information technology logic. Results: Adult survivors (n = 20) of pediatric ALL or HL, registered to be seen in radiation oncology or survivorship clinic at the University of Pennsylvania, created an online SCP and completed an online survey. Approximately 80% of patients contacted consented and completed SCP indicating high acceptability; two-thirds (66%) completed the survey. Participants were a median of 35.5 years of age and of 26.5 years since diagnosis. They were 50% female, majority Caucasian (90%), 70% ALL and 30% HL survivors. SCPs took an average of 9 minutes 46 seconds to complete. The majority (95%) of respondents found the SCP generator easy to use, would recommend it to others (85%), and were satisfied with the amount of information received (80%). Ninety percent stated they intended to discuss their SCP with a healthcare provider. Only a third (35%) of survivors stated they had previously received a formal SCP. Seventy percent (70%) stated a written or online plan was the best way to convey health information between visits. Preferences for use of online SCP included: 70% wanting a treatment summary to complete their SCP and 50% wanting personal information to be saved for later use. Conclusions: Online patient-motivated SCPs are a feasible and acceptable way to deliver information to adult survivors of pediatric cancer about long term health risks. Further research into optimal methods for creation, use and health benefits of SCPs is warranted.

Mortality among five-year survivors of childhood cancer: Results over five decades of follow-up in the Childhood Cancer Survivor Study.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 10013-10013
Author(s):  
Stephanie B Dixon ◽  
Qi Liu ◽  
Matthew J. Ehrhardt ◽  
Eric Jessen Chow ◽  
Kevin C. Oeffinger ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Primary Cancer ◽  
Cumulative Mortality ◽  
Late Mortality ◽  
Risk Of Death ◽  
Increased Risk ◽  
All Cause Mortality ◽  
Health Related ◽  
Survivors Of Childhood Cancer

10013 Background: Adult survivors of childhood cancer are at greater risk for late mortality compared to the general population due to cancer and its treatment. Risk factors, patterns and specific causes of late mortality across the lifespan are not well established. Methods: All-cause, cause-specific, and health-related late mortality (HRM; excludes death from primary cancer and external causes) > 5 years from diagnosis were evaluated in survivors diagnosed < 21 years of age between 1970-1999. Cause of death was based on ICD codes from the National Death Index through December 2017. Cumulative mortality, mortality rates and standardized mortality ratios (SMRs) with 95% confidence intervals (CIs) were estimated, overall and in 5- and 10-year survival periods. Results: Among 34,230 survivors (median time from diagnosis 29.1 years, range 5.0 - 48.0) the 40-year cumulative mortality was 23.3% (95% CI 22.7 - 24.0). Of 5,916 deaths, 3,061 (51.2%) were attributable to health-related causes including subsequent neoplasm (n = 1,458), cardiac (n = 504), and pulmonary causes (n = 238). All-cause mortality by time from diagnosis demonstrated a U-shaped distribution: 10.1 deaths/1000 person-years at 5-9 years, largely due to recurrence of the primary cancer, decreasing to 4.1 at 15-19 years before increasing to 18.5 at 40-48 years, attributable to an increasing mortality rate from HRM (2.3 at 5-9 years; 17.0 at 40-48 years). For the interval 5-9 years from diagnosis, survivors had an 18.1-fold (95% CI 17.3-18.9) higher risk of death from any cause, and a 13.1-fold (11.9-13.4) higher risk for HRM when compared to the general population. Although the SMRs declined with duration of follow-up, survivors had a 4-fold higher risk of death overall, attributable to a more than 4-fold increased risk of HRM. HRM 40-48 years from diagnosis was largely attributable to an increased risk of death due to subsequent neoplasm (SMR 6.0, 95% CI 4.9-7.2), cardiac (3.9, 2.9-5.0) and pulmonary (5.6, 3.6-8.4) causes. Cause-specific mortality remained markedly elevated at 40-48 years from diagnosis: CNS malignancy (SMR 11.7, 95% CI 5.4-22.3), benign meningioma (171.3, 34.4-500.5), valvular heart disease (39.8, 21.2-68.1), cardiomyopathy (10.4, 4.5-20.5), stroke (7.9, 4.6-12.6), and renal failure (5.6, 1.8-13.2). HRM was significantly higher among the youngest group of survivors (0-4 years at diagnosis), non-Hispanic blacks and those who received radiation to the brain, chest or total body, or who were exposed to anthracycline, alkylating or platinum chemotherapy. Conclusions: After five decades, aging survivors consistently remain at higher risk of all-cause mortality compared to the general, aging population, primarily due to a persistent 4-fold increased risk of HRM. Continued late-effects surveillance and reduction of therapies associated with long-term morbidity and increased mortality is essential.

scholarly journals Childhood cancer survivorship: barriers and preferences

2019 ◽  
pp. bmjspcare-2019-002001
Author(s):  
Christina Signorelli ◽  
Claire Wakefield ◽  
Jordana K McLoone ◽  
Joanna Fardell ◽  
Janelle M Jones ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Late Effects ◽  
Age Groups ◽  
Patient Reported ◽  
Childhood Cancer Survivorship ◽  
Young Survivors ◽  
Adolescent And Young Adults ◽  
Survivors Of Childhood Cancer ◽  
To Receive

ObjectiveMany survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors’ barriers to accessing, and preferences for survivorship care.MethodsWe invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16–25 years (adolescent and young adults (AYAs)) and >25 years (‘older survivors’). Participants completed questionnaires and optional interviews.Results633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%–97%). Many (36%–58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors’ prevalence of late effects increased. Of those attending a follow-up clinic, 34%–56% were satisfied with their care, compared with 14%–15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers.ConclusionsUnderstanding patient-reported barriers, and tailoring care to survivors’ follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.

scholarly journals Supporting long-term follow-up of young adult survivors of childhood cancer: Correlates of healthcare self-efficacy

2016 ◽  
Vol 64 (2) ◽  
pp. 358-363 ◽  
Author(s):  
Kimberly A. Miller ◽  
Katherine Y. Wojcik ◽  
Cynthia N. Ramirez ◽  
Anamara Ritt-Olson ◽  
David R. Freyer ◽  
...  
Keyword(s):  
Young Adult ◽  
Childhood Cancer ◽  
Self Efficacy ◽  
Adult Survivors ◽  
Long Term Follow Up ◽  
Young Adult Survivors ◽  
Survivors Of Childhood Cancer

Piloting breast cancer survivorship care planning in a safety net hospital.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 65-65
Author(s):  
Sofia F. Garcia ◽  
Katy Wortman ◽  
Yanina Guevara ◽  
Elizabeth A. Hahn ◽  
Maria E. Corona ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Self Efficacy ◽  
Safety Net ◽  
Care Staff ◽  
Health Care Staff ◽  
Survivorship Care ◽  
Safety Net Hospital ◽  
Patient Reported

65 Background: Survivorship care plans (SCPs) include treatment summaries and follow-up care recommendations intended to improve patient care and well-being after cancer treatment. Limited research has yielded mixed results regarding SCPs' impact on patient and system outcomes, but emphasized provider burden as an implementation barrier. We created a patient-centered SCP template and implemented its delivery at a safety net hospital that serves primarily racial/ethnic minority patients. Methods: In a single-arm feasibility study, oncologists and advanced practice nurses used the template to deliver SCPs to post-treatment breast cancer survivors (BCS) in consultation visits. We assessed changes in patient-reported outcomes from baseline (pre-SCP) to a 3-month follow-up, as well as provider time burden. Results: Female BCS participants (n = 75; mean age = 58.5 years) were primarily African-American (73%) and had high school/GED education or less (61%). Average time since diagnosis was 3.7 years (SD = 3.8); all received surgery; most received radiation (84%), hormone (77%), and/or chemotherapy treatment (73%). At follow-up, a majority rated their SCPs as good to excellent (92%), easy or very easy to understand (84%), a good to excellent summary of their treatment (92%) and as motivation for healthy lifestyles (88%). BCS follow-up scores improved significantly from baseline on breast cancer knowledge (p = .02), self-efficacy (p = .03), the QLQ-INFO25 (p < .01), and the FACIT TS-PS satisfaction with health care staff communication subscale (p < .01). No significant differences between baseline and follow-up scores (p < .05) were found for overall treatment satisfaction, health behaviors, and health-related quality of life. Preparing and delivering SCPs took providers considerable time (M = 54 & 22 minutes, respectively). Conclusions: This pilot study is limited by a single-arm design, but results suggest that SCPs may be related to improved survivor knowledge, information, self-efficacy and communication with health care staff. The individualized, comprehensive SCPs were well received by BCS in a safety net hospital but delivery was time-intensive. These findings will inform future research trials and clinical care initiatives.

scholarly journals Perceived Health among Adolescent and Young Adult Survivors of Childhood Cancer

2021 ◽  
Vol 28 (1) ◽  
pp. 825-836
Author(s):  
Morgan Young-Speirs ◽  
Caitlin Forbes ◽  
Michaela Patton ◽  
K. Brooke Russell ◽  
Mehak Stokoe ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Health Resources ◽  
Adult Survivors ◽  
Perceived Health ◽  
Good Health ◽  
Adolescent And Young Adult ◽  
Control Group ◽  
Increased Risk ◽  
Patient Reported ◽  
Survivors Of Childhood Cancer

Survivors of childhood cancer (SCCs) are at increased risk of late effects, which are cancer- and treatment-related side-effects that are experienced months to years post-treatment and encapsulate a range of physical, cognitive and emotional problems including secondary malignancies. Perceived health can serve as an indicator of overall health. This study aims to (1) understand how a patient reported outcome (PRO) of perceived health of SCCs compares to controls who have not had a cancer diagnosis and (2) examine the relationships between perceived health and demographic and clinical variables, and health behavior. A total of 209 SCCs (n = 113 (54.10%) males; median age at diagnosis = 6.50 years; median time off treatment = 11.10 years; mean age at study = 19.00 years) were included. SCCs completed annual assessments as part of Long-Term Survivor Clinic appointments, including a question on perceived health answered on a five-point Likert scale. Data were collected retrospectively from medical charts. Perceived health of SCCs was compared to a control group (n = 836) using data from the 2014 Canadian Community Health Survey. Most SCCs (67%) reported excellent or very good health. The mean perceived health of SCCs (2.15 ± 0.91) was not statistically different from population controls (2.10 ± 0.87). Pain (B = 0.35; p < 0.001), physical activity (B = −0.39; p = 0.013) and concerns related to health resources (B = 0.59; p = 0.002) were significant predictors of perceived health. Factors shown to influence SCCs’ perceived health may inform interventions. Exploration into how SCCs develop their conception of health may be warranted.

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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