Physician needs and preferences for information about long-term follow-up and care of survivors of childhood cancer.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 66-66 ◽  
Author(s):  
Melanie Keats ◽  
Kelsey Shea ◽  
Louise Parker ◽  
Samuel A. Stewart ◽  
Annette Flanders ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Family Physicians ◽  
Cancer Information ◽  
Care Providers ◽  
Care Plans ◽  
Healthcare Needs ◽  
Perceived Utility ◽  
Increased Risk

66 Background: The treatments that childhood cancer survivors (CCS) undergo can lead to an increased risk of other health problems later in life, and risk-based follow-up care is necessary throughout their lifetime. Regrettably, family physicians caring for CCS often report having no record of their patients’ past disease, treatment history, or need for follow-up. As the large majority of CCS will transition from specialized pediatric oncology care to generalized adult care in the community, detailed treatment summaries and Survivorship Care Plans (SCP) are needed to ensure that both the survivor and their care providers are adequately informed of the survivors diagnosis, treatment(s), potential risk for late effects, and long-term surveillance and healthcare needs. This qualitative study sought to explore the needs, preferences, and the perceived utility of SCP for family physicians (FP) caring for CCS. Methods: Using publically available Children’s Oncology Group guidelines, a de-identified sample SCP indicating the diagnosis, treatment(s) received, and follow-up recommendations for a common childhood cancer diagnosis was automatically generated using a newly developed algorithm and patient data from the Cancer in Young People – Canada registry. Semi-structured telephone interviews with six FP that have a known CCS in their practice were then used to gain insight into the FP perceived role in the long-term management and care of CCS, their cancer information needs, concerns with communication, their perceived utility of the SCP, and preferred format(s) for receiving the SCP. The constant comparative method was used for thematic analysis. Results: The key themes emerging from the six completed interviews include a lack of confidence among FP in their ability to care for CCS and a need for additional knowledge and resources. FP also identified psychological barriers to cancer care discussions with CCS and identified a patient need for greater psychological support. Overall, SCP were viewed as helpful. Conclusions: SCP are perceived to be of benefit to FP of CCS as they serve to increase their knowledge of patient diagnosis, treatments received, and suggested risk-based follow-up.

Long-term incidence of venous thromboembolism (VTE) among survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS).

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10562-10562
Author(s):  
Arin L Madenci ◽  
Brent Weil ◽  
Qi Liu ◽  
Todd M. Gibson ◽  
Yutaka Yasui ◽  
...  
Keyword(s):  
High Risk ◽  
Childhood Cancer ◽  
Chronic Conditions ◽  
Malignant Neoplasm ◽  
Cancer Recurrence ◽  
Care Providers ◽  
Second Malignant Neoplasm ◽  
Increased Risk ◽  
Survivors Of Childhood Cancer

10562 Background: This study aimed to estimate the incidence of late-occurring VTE among survivors of childhood cancer, and to identify associated demographic and clinical factors that define high-risk subgroups for potential screening and prevention. Methods: Using data from CCSS, a multi-institutional, longitudinal cohort of 5-year survivors of childhood cancer (diagnosed 1970-1999) and their siblings, the primary endpoint of self-reported late VTE (occurring ≥5 years after diagnosis) was estimated using multivariable piecewise exponential models adjusted for age, sex, and race. Generalized estimating equations accounted for potential within-family correlation where applicable. Results: Among 23,601 survivors and 5051 siblings, the incidence of VTE was 1.15 and 0.48 events per 1000 person-years, respectively. For survivors, median age at last follow-up was 28.6 years (range 5.6-58.3) and median follow-up time from diagnosis was 21.2 years (range 5.0-39.3). The adjusted rate ratio (RR) for survivors compared to siblings was 2.2 (95% confidence interval [CI] = 1.7-2.8, P< 0.01). Among survivors, risk factors for VTE included BMI≥30kg/m2 (ref. BMI 18.5-24.5; RR = 1.5, CI = 1.2-2.0, P< 0.01), increasing number of severe or life-threatening (i.e. CTCAE grades 3 or 4) non-VTE chronic conditions (ref. 0 conditions; 1-2 conditions: RR = 2.5, CI = 2.0-3.1, P< 0.01 ; ≥3 conditions: RR = 3.5, CI = 2.5-4.9, P< 0.01), and cancer recurrence or second malignant neoplasm (RR = 3.5, CI = 2.7-4.6, P< 0.01). Incidence of late VTE was associated with increased subsequent mortality, independent of non-VTE chronic conditions (RR 2.2, 95% CI = 1.7-2.8, P< 0.01). Conclusions: Survivors of childhood cancer remain at increased risk for VTE across their lifespan. While typically not causal, late VTE was associated with subsequent mortality. Care providers should be aware of this increased risk and consider interventions that target modifiable co-morbidities such as obesity. Surveillance and education should be directed toward high-risk survivors.

Programs for adult survivors of childhood cancer.

1998 ◽  
Vol 16 (8) ◽  
pp. 2864-2867 ◽  
Author(s):  
K C Oeffinger ◽  
D A Eshelman ◽  
G E Tomlinson ◽  
G R Buchanan
Keyword(s):  
Health Care ◽  
Childhood Cancer ◽  
Health Care Providers ◽  
Primary Care Physicians ◽  
Adult Survivors ◽  
Care Providers ◽  
Care Needs ◽  
Survivors Of Childhood Cancer

PURPOSE The potential for late effects of treatment necessitates long-term monitoring of adult survivors of childhood cancer. The purpose of this study was to determine how institutions follow up young adult survivors of pediatric malignancy. Specifically, we were interested in the types of health care providers who follow up these patients, how the follow-up is administered, and what barriers to follow-up have been encountered. METHODS A 16-item questionnaire was mailed to the 219 members of the Children's Cancer Group (CCG) and the Pediatric Oncology Group (POG). The survey consisted of four categories of questions that asked for information regarding the existence of a program to follow up young adults, the setting of the program, routine activities of the program, and commonly encountered barriers to care. RESULTS One hundred eighty-two members returned the survey (83% response rate). Fifty-three percent of the respondents have a long-term follow-up clinic at their institution. Whereas 44% have a mechanism for following up adult survivors, only 15% of the programs have established a formal database for adults. Nearly all the programs (93%) use a pediatric oncologist. Although an adult oncologist assists in 13% of the programs, primary care physicians are uncommonly (8%) involved. CONCLUSION Few programs focus on the long-term health care needs of adult survivors of childhood cancer. The majority of existing programs are in pediatric institutions, without significant input from adult-oriented, generalist health care providers.

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.

Clinical trial enrollment and follow-up visit rates among survivors of childhood cancer.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 22-22
Author(s):  
Kelley Kennedy Hutchins ◽  
Sureyya Savasan ◽  
Ronald Thomas ◽  
Laura Strathdee ◽  
Jeffrey Warren Taub
Keyword(s):  
Clinical Trial ◽  
Cancer Treatment ◽  
Childhood Cancer ◽  
Survival Rates ◽  
Age At Diagnosis ◽  
Treatment Center ◽  
Increased Risk ◽  
Significant Difference

22 Background: Childhood cancer treatment outcomes have improved substantially with five-year overall survival rates reaching greater than 80%. However, survivors are at increased risk of long-term complications, and long-term follow-up (LTFU) is critical. Distance from a cancer treatment center and increased time from completion of therapy have been associated with decreased LTFU rates. We studied whether lack of enrollment in a therapeutic clinical trial may be an additional barrier to receiving LTFU care. Methods: We conducted a retrospective review of 353 patient records at the Children’s Hospital of Michigan enrolled in our Children’s Oncology Group (COG) registry between 1/1/05-12/31/10. All patients were ≤ 25 years of age at diagnosis.Sixty-seven patients were excluded (died prior to follow-up, n = 61; still on therapy, n = 5; insufficient information, n = 1). A total of 286 patient charts were available for analysis after exclusion. One hundred sixty-two (57%) patients were enrolled in a therapeutic clinical trial, and 124 (43%) were enrolled in a biology study alone due to lack of an open therapeutic clinical trial at the time of diagnosis. One hundred eighty-six (65%) patients were < 10 years of age at diagnosis. Results: Follow-up rates at one-, two- and five-years following completion of therapy for patients enrolled in a therapeutic clinical trial were 94.5%, 91.9% and 74%, respectively, compared to 82.9% (p = 0.002), 74% (p < 0.001) and 66% (p = 0.029) for patients not enrolled. The follow-up rate at five-years for patients who were < 10 years of age was 77.5% compared to 70.7% (p = 0.007) for patients > 10 years. There was no significant difference at one- or two-years based on age at diagnosis. Conclusions: Our findings demonstrate that patients enrolled in a therapeutic clinical trial have significantly superior LTFU rates compared to patients enrolled in biology studies alone. Younger age at diagnosis demonstrated a superior rate at five-years of follow-up. Our findings suggest that additional resources/strategies must be utilized to ensure better LTFU for patients not enrolled in therapeutic clinical trials.

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 Yield of Screening for Long-Term Complications Using the Children's Oncology Group Long-Term Follow-Up Guidelines

2012 ◽  
Vol 30 (35) ◽  
pp. 4401-4408 ◽  
Author(s):  
Wendy Landier ◽  
Saro H. Armenian ◽  
Jin Lee ◽  
Ola Thomas ◽  
F. Lennie Wong ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Screening Tests ◽  
High Yield ◽  
Oncology Group ◽  
X Ray ◽  
Increased Risk ◽  
Long Term Follow Up

PurposeThe Children's Oncology Group Long-Term Follow-Up (COG-LTFU) Guidelines use consensus-based recommendations for exposure-driven, risk-based screening for early detection of long-term complications in childhood cancer survivors. However, the yield from these recommendations is not known.MethodsSurvivors underwent COG-LTFU Guideline–directed screening. Yield was classified as negligible/negative (< 1%), intermediate (≥ 1% to < 10%), or high (≥ 10%). For long-term complications with high yield, logistic regression was used to identify subgroups more likely to screen positive.ResultsOver the course of 1,188 clinic visits, 370 childhood cancer survivors (53% male; 47% Hispanic; 69% leukemia/lymphoma survivors; median age at diagnosis, 11.1 years [range, 0.3 to 21.9 years]; time from diagnosis, 10.5 years [range, 5 to 55.8 years]) underwent 4,992 screening tests. High-yield tests included thyroid function (hypothyroidism, 10.1%), audiometry (hearing loss, 22.6%), dual-energy x-ray absorptiometry scans (low bone mineral density [BMD], 23.2%), serum ferritin (iron overload, 24.0%), and pulmonary function testing/chest x-ray (pulmonary dysfunction, 84.1%). Regression analysis failed to identify subgroups more likely to result in high screening yield, with the exception of low BMD (2.5-fold increased risk for males [P = .04]; 3.3-fold increased risk for nonobese survivors [P = .01]). Screening tests with negligible/negative (< 1%) yield included complete blood counts (therapy-related leukemia), dipstick urinalysis for proteinuria and serum blood urea nitrogen/creatinine (glomerular defects), microscopic urinalysis for hematuria (hemorrhagic cystitis, bladder cancer), ECG (anthracycline-related conduction disorder), and hepatitis B and HIV serology.ConclusionScreening tests with a high yield are appropriate for risk groups targeted for screening by the COG-LTFU Guidelines. Elimination of screening tests with negligible/negative yield should be given consideration.

scholarly journals Late Morbidity Among Survivors of Childhood Cancers; Experience at Tertiary Care Cancer Hospital

2020 ◽  
Vol 6 (2) ◽  
Author(s):  
Najma Shaheen ◽  
Mir Rooh Jan ◽  
Saghir Khan ◽  
Shazia Riaz
Keyword(s):  
Pulmonary Function ◽  
Childhood Cancer ◽  
Hodgkin Lymphoma ◽  
Cancer Type ◽  
Female Ratio ◽  
Increased Risk ◽  
Late Morbidity ◽  
Long Term Survivors

Background: Long-term survivors of childhood malignancies are at increased risk of experiencing treatment-related morbidities. Survival into late adulthood in these children provides ample time for the acquisition of long-term sequelae. This study aimed to determine late adverse effects among long-term survivors of childhood cancer from a low-income country perspective. Methods: Data were retrospectively collected from review of charts of patients aged under 18 years at the time of their primary diagnosis between January 1, 1995, to December 31, 2008, and who survived for at least 5 years after completion of their treatment. Analyzed data included demographics, cancer type, treatment modality, types of chemotherapy agents administered and specific late morbidities including frequency of azoospermia, oligospermia, endocrine abnormalities, hearing and pulmonary function impairment, and cardiac dysfunction among the long-term survivors of cancer. Results: The total number of patients was 300 with a mean age of 18 ± 2 years. The male to female ratio was 2.7:1. Median follow up duration was 18 years (range: 5-25 years). Seventy-seven percent of patients were from Punjab, 20% were from Khyber Pakhtunkhwa and 3% were from other provinces. Fifty percent had a diagnosis of Hodgkin Lymphoma, 17% Acute Lymphoblastic Leukemia, 13% Non-Hodgkin Lymphoma, 10% Germ cell tumors and 10% had other tumors. Fifty-seven percent received chemotherapy, 23% chemotherapy and radiotherapy, 15% chemotherapy and surgery, 3% chemotherapy, surgery and radiotherapy and 2% had only surgery. Notable long-term documented sequelae were; azoospermia/oligospermia in 64%, endocrine abnormalities in 25% with hypothyroidism in 13.5% and follicle-stimulating hormone and luteinizing hormone abnormalities in 11.5%, ototoxicity in 6.5%, impaired pulmonary function tests in 4.6%, cardiotoxicity in 2.4% and second malignancies (acute myeloid Leukemia and myelodysplastic syndrome)  in 1%. Conclusion: Childhood cancer survivors are at increased risk of adverse treatment-related sequelae and a long-term follow-up plan should be in place in centers where they receive treatment for their primary disease.

scholarly journals Impact of atrial fibrillation pattern on outcomes after left atrial appendage closure: lessons from the prospective LAARGE registry

2021 ◽  
Author(s):  
Shinwan Kany ◽  
Johannes Brachmann ◽  
Thorsten Lewalter ◽  
Ibrahim Akin ◽  
Horst Sievert ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Left Atrial Appendage ◽  
Systemic Embolism ◽  
Long Term Outcomes ◽  
Increased Risk ◽  
History Of ◽  
One Year ◽  
The One

Abstract Background Non-paroxysmal (NPAF) forms of atrial fibrillation (AF) have been reported to be associated with an increased risk for systemic embolism or death. Methods Comparison of procedural details and long-term outcomes in patients (pts) with paroxysmal AF (PAF) against controls with NPAF in the prospective, multicentre observational registry of patients undergoing LAAC (LAARGE). Results A total of 638 pts (PAF 274 pts, NPAF 364 pts) were enrolled. In both groups, a history of PVI was rare (4.0% vs 1.6%, p = 0.066). The total CHA2DS2-VASc score was lower in the PAF group (4.4 ± 1.5 vs 4.6 ± 1.5, p = 0.033), while HAS-BLED score (3.8 ± 1.1 vs 3.9 ± 1.1, p = 0.40) was comparable. The rate of successful implantation was equally high (97.4% vs 97.8%, p = 0.77). In the three-month echo follow-up, LA thrombi (2.1% vs 7.3%, p = 0.12) and peridevice leak > 5 mm (0.0% vs 7.1%, p = 0.53) were numerically higher in the NPAF group. Overall, in-hospital complications occurred in 15.0% of the PAF cohort and 10.7% of the NPAF cohort (p = 0.12). In the one-year follow-up, unadjusted mortality (8.4% vs 14.0%, p = 0.039) and combined outcome of death, stroke and systemic embolism (8.8% vs 15.1%, p = 0.022) were significantly higher in the NPAF cohort. After adjusting for CHA2DS2-VASc and previous bleeding, NPAF was associated with increased death/stroke/systemic embolism (HR 1.67, 95% CI 1.02–2.72, p = 0.041). Conclusion Atrial fibrillation type did not impair periprocedural safety or in-hospital MACE patients undergoing LAAC. However, after one year, NPAF was associated with higher mortality. Graphic abstract

scholarly journals Cumulative incidence and risk factors for radiation induced leukoencephalopathy in high grade glioma long term survivors

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Robert Terziev ◽  
Dimitri Psimaras ◽  
Yannick Marie ◽  
Loic Feuvret ◽  
Giulia Berzero ◽  
...  
Keyword(s):  
Risk Factors ◽  
Cumulative Incidence ◽  
High Grade Glioma ◽  
High Grade ◽  
Nucleotide Polymorphisms ◽  
Increased Risk ◽  
Radiation Induced ◽  
Long Term Survivors

AbstractThe incidence and risk factors associated with radiation-induced leukoencephalopathy (RIL) in long-term survivors of high-grade glioma (HGG) are still poorly investigated. We performed a retrospective research in our institutional database for patients with supratentorial HGG treated with focal radiotherapy, having a progression-free overall survival > 30 months and available germline DNA. We reviewed MRI scans for signs of leukoencephalopathy on T2/FLAIR sequences, and medical records for information on cerebrovascular risk factors and neurological symptoms. We investigated a panel of candidate single nucleotide polymorphisms (SNPs) to assess genetic risk. Eighty-one HGG patients (18 grade IV and 63 grade III, 50M/31F) were included in the study. The median age at the time of radiotherapy was 48 years old (range 18–69). The median follow-up after the completion of radiotherapy was 79 months. A total of 44 patients (44/81, 54.3%) developed RIL during follow-up. Twenty-nine of the 44 patients developed consistent symptoms such as subcortical dementia (n = 28), gait disturbances (n = 12), and urinary incontinence (n = 9). The cumulative incidence of RIL was 21% at 12 months, 42% at 36 months, and 48% at 60 months. Age > 60 years, smoking, and the germline SNP rs2120825 (PPARg locus) were associated with an increased risk of RIL. Our study identified potential risk factors for the development of RIL (age, smoking, and the germline SNP rs2120825) and established the rationale for testing PPARg agonists in the prevention and management of late-delayed radiation-induced neurotoxicity.

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