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

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.

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Implementation of an integrative wellness program for pediatric cancer survivors at risk for cardiac late-effects.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.168 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 168-168 ◽

Cited By ~ 1

Author(s):

Theresa C DiSipio ◽

Frances Zappalla ◽

Joanne Quillen

Keyword(s):

At Risk ◽

High Risk ◽

Cancer Survivors ◽

Childhood Cancer ◽

Pediatric Cancer ◽

Late Effects ◽

Childhood Cancer Survivors ◽

Relaxation Techniques ◽

Cardiac Events ◽

Pediatric Cancer Survivors

168 Background: Many adult childhood cancer survivors are at risk of developing adverse health outcomes as a result of their previous diagnosis and treatments. Cardiac events are the most common cause of non-malignant mortality among pediatric cancer survivors; one in eight will develop severe cardiac disease (Lipshultz et al, 2012). The use of integrative therapies in the survivorship setting has the potential to reduce risk of developing late effects and assist with positive coping mechanisms (Kelly, 2009). Early exposure to anti-inflammatory nutrition, yoga and relaxation techniques in combination with thorough cardiac monitoring has the potential to reduce feelings of anxiety and fear of recurrence while catalyzing positive lifestyle modifications and improving overall wellness. Methods: In partnership with the Department of Cardiology at AIDHC, childhood cancer survivors at moderate-to-high risk were identified and referred for integrative cardiology consults (ICC) with a goal of providing an introduction to integrative medicine approaches, and a long-term emphasis on decreasing the incidence of future adverse cardiac events. Patients were approached during their routine post-therapy follow-up appointments. Cardiology consult orders were placed by the oncology provider through the electronic medical record (EPIC) via smart phrasing. Results: A total of 15 patients and families were approached. All 15 complied to ICC in conjunction with their routine ECHO/EKG testing. 47% of the referred patients were exposed to both anthracycline chemotherapy and radiation. 17% presented with significant cardiac related family medical history and 40% had existing comorbidities or lifestyles that may affect future cardiac health. Conclusions: Implementing an ICC standard for childhood cancer survivors at moderate-to-high risk for cardiac late-effects has been successful for AIDHC’s Cancer Survivorship Clinic and shows promise as a preventative intervention. Efficacy will be assessed by measuring patient and family knowledge pre and post ICC in the future.

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Theoretical and Therapeutic Applications of Mental Pain in Childhood cancer Survivors of the Findings of the paper

Psychology and Mental Health Care ◽

10.31579/2637-8892/007 ◽

2018 ◽

Vol 2 (4) ◽

pp. 01-03

Author(s):

Haya Raz ◽

Shulamith Kreitler

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Pediatric Cancer ◽

Childhood Cancer Survivors ◽

Mental Pain ◽

Therapeutic Implications ◽

The Past ◽

Self Image ◽

Pediatric Cancer Survivors

The paper deals with a review of “Mental Pain in Israeli Adult Childhood Cancer Survivors and Its Effects on their Quality of Life” by H. Raz, N. Tabak, Y. Alkalay, & S. Kreitler (1). The review focuses on theoretical and therapeutic implications of the findings. The major theoretical elaboration of the findings focuses on the construct of mental pain. This seems advisable both because there are several apparently similar concepts which presumably render mental pain superfluous and because mental pain was found to characterize pediatric cancer survivors who otherwise were found to be well adjusted as adults. The new redefinition of mental pain focuses on the components of low self-image and low meaningfulness of life. The constructs of mental pain in the past and of tolerance of mental pain were found to be less useful in this context. The new redefinition points to two new venues of interventions for reducing mental pain: enhancing self-image and increasing meaningfulness of life. The two kinds of interventions, which are based on elaborating meanings, are briefly described.

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Abstract 18153: Abnormal Dynamic Myocardial Response to Exercise Despite Normal Resting Ejection Fraction in Childhood Cancer Survivors Treated With Anthracyclines

Circulation ◽

10.1161/circ.130.suppl_2.18153 ◽

2014 ◽

Vol 130 (suppl_2) ◽

Author(s):

Ching Kit - Chen ◽

Barbara Cifra ◽

Cameron Slorach ◽

Cedric Manlhiot ◽

Brian W McCrindle ◽

...

Keyword(s):

Cancer Survivors ◽

Pediatric Cancer ◽

Lateral Wall ◽

Childhood Cancer Survivors ◽

Peak Exercise ◽

Force Frequency ◽

Exercise Echocardiography ◽

Pediatric Cancer Survivors ◽

Basal Septum ◽

Response To Exercise

Introduction: There are limited data on myocardial systolic & diastolic response to exercise in pediatric cancer survivors treated with anthracycline. We used exercise echocardiography to evaluate ventricular systolic and diastolic reserve in these patients. Methods: 50 children (age 14.4±2.4 years) who had received anthracycline treatment with median dose 178mg/m 2 (range 60-450) underwent stepwise exercise echocardiography at 9.3±2.9 years after end of therapy, and compared with 50 normal controls. All subjects had normal resting LVEF. Peak systolic (s’) & early diastolic (e’) myocardial velocities in the LV & RV lateral wall, & basal septum were measured at rest & during exercise using color TDI. Measurements of myocardial isovolumic acceleration (IVA) at incremental heart rates (HR) were used to study force-frequency relationships (FFR). Results: At rest, LV systolic parameters were preserved in patients; septal e’ was significantly lower compared to controls (10.4±1.9cm/s vs 11.4±1.9cm/s; p =0.009). At peak exercise, LV & RV lateral wall, & basal septal e’ velocities were lower in patients (17.4±3.8cm/s vs 19.6±3.1cm/s, p =0.002; 21.5±1.6cm/s vs 22.3±1.9cm/s, p =0.02; & 16.3±2.4cm/s vs 18.7±2.7cm/s, p <0.001; respectively) & the slopes of change with increasing HR were significantly lower in patients for LV lateral e’ [EST (SE): +0.68 (0.08) vs +0.85 (0.05) cm/s per 10 bpm; p <0.001], RV lateral e’ [+1.47 (0.05) vs 1.69 (0.06) cm/s per 10 bpm; p <0.001] & basal septum e’ [+0.50 (0.05) vs 0.58 (0.05) cm/s per 10 bpm; p =0.001]. During exercise, peak contractile force developed by patients was significantly lower (LV IVA 5.12±1.85m/s 2 vs 6.75±3.28m/s 2 ; p =0.004). FFR analysis showed reduced rate-contractility trajectory in patients [+0.202 (0.008) vs +0.217 (0.008) natural log m/s 2 per 10 bpm; p =0.001]. Conclusions: Long-term survivors of anthracycline-treated pediatric cancer have reduced systolic & diastolic myocardial reserve in response to exercise.

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Posttraumatic Stress Symptoms During Treatment in Parents of Children With Cancer

Journal of Clinical Oncology ◽

10.1200/jco.2005.09.110 ◽

2005 ◽

Vol 23 (30) ◽

pp. 7405-7410 ◽

Cited By ~ 167

Author(s):

Anne E. Kazak ◽

C. Alexandra Boeving ◽

Melissa A. Alderfer ◽

Wei-Ting Hwang ◽

Anne Reilly

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Posttraumatic Stress ◽

Well Being ◽

Childhood Cancer Survivors ◽

Posttraumatic Stress Symptoms ◽

Treatment Intensity ◽

Mothers And Fathers ◽

Stress Symptoms ◽

Time Since Diagnosis

Purpose The conceptualization of childhood cancer and its treatment as traumatic has gained increasing support in the growing literature on medically related posttraumatic stress. Posttraumatic stress symptoms (PTSS) such as intrusive thoughts, physiologic arousal, and avoidance have been documented in mothers and fathers of childhood cancer survivors. In this study we investigated the presence of PTSS in parents of children currently in treatment and their association with treatment intensity and length of time since diagnosis. Methods Mothers (N = 119) and fathers (N = 52) of children currently in treatment for a childhood malignancy completed questionnaire measures of PTSS. Outcomes on these measures were compared with a sample of parents of childhood cancer survivors from our hospital. Oncologist ratings of treatment intensity were obtained based on diagnosis, treatment modalities, and protocol number. Results All but one parent reported PTSS. Mean scores indicated moderate PTSS for both mothers and fathers. In families with two participating parents, nearly 80% had at least one parent with moderate-to-severe PTSS. There were minimal associations between PTSS and length of time since diagnosis. Conclusion PTSS are common among parents of children currently undergoing cancer treatment. Trauma-informed psychosocial interventions can be used to help patients and families, including normalizing the experience as potentially traumatic and using evidence-based interventions that are emerging to facilitate long-term well-being.

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Support needs of Dutch young adult childhood cancer survivors

Supportive Care in Cancer ◽

10.1007/s00520-021-06723-7 ◽

2022 ◽

Author(s):

L. M. E. van Erp ◽

H. Maurice-Stam ◽

L. C. M. Kremer ◽

W. J. E. Tissing ◽

H. J. H. van der Pal ◽

...

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Associated Factors ◽

Childhood Cancer Survivors ◽

Future Perspective ◽

Support Needs ◽

Social Emotional ◽

Need For Support ◽

Physical Consequences

Abstract Background Studies about support needs of young adult childhood cancer survivors (YACCS) previously focused mainly on information needs. This study assessed support needs and associated factors (sociodemographic, medical, and psychosocial functioning) in Dutch YACCS. Methods YACCS (aged 18–30, diagnosed ≤ 18 years, time since diagnosis ≥ 5 years) cross-sectionally filled out a questionnaire regarding their need for various types of support (concrete information, personal counseling, and peer contact) in eight domains (physical consequences of childhood cancer, social-emotional consequences, relationships and sexuality, fertility, lifestyle, school and work, future perspective, insurance and mortgage), and questionnaires assessing health-related quality of life (PedsQL-YA), anxiety and depression (HADS), and fatigue (CIS-20R). Descriptive statistics were used to describe support needs. Linear regression was used to identify characteristics associated with support needs. Results One hundred fifty-one YACCS participated (response = 40%). Most YACCS reported a need for support in one or more domains (88.0%, N = 133). More than half of the participants reported a need for concrete information in the domains lifestyle, fertility, and physical consequences of childhood cancer and 25–50% in the domains insurance and mortgages, future perspective, and social-emotional consequences of childhood cancer. In the domains lifestyle and physical as well as emotional consequences of childhood cancer, 25–50% reported a need for counseling. Overall need for support was positively associated with middle (β = 0.26, p = 0.024) and high (β = 0.35, p = 0.014) compared to low educational attainment and (sub)clinical anxiety (β = 0.22, p = 0.017), and negatively associated with social functioning (β = − 0.37, p = 0.002) in multivariate analyses. Conclusion YACCS report the strongest need for support, for concrete information, in the domains lifestyle, fertility, and physical consequences of childhood cancer. Associated factors were mostly socioeconomic and psychosocial in nature. Psychosocial care should be an integral part of survivorship care for YACCS, with screening for psychosocial problems, information provision including associated emotional consequences and support if necessary (psycho-education) and tailored interventions, and adequate referrals to more specialized care if necessary.

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Fear of progression in parents of childhood cancer survivors: A dyadic data analysis

Psycho-Oncology ◽

10.1002/pon.5508 ◽

2020 ◽

Vol 29 (10) ◽

pp. 1678-1685

Author(s):

Mona L. Peikert ◽

Laura Inhestern ◽

Konstantin A. Krauth ◽

Gabriele Escherich ◽

Stefan Rutkowski ◽

...

Keyword(s):

Data Analysis ◽

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Dyadic Data Analysis ◽

Dyadic Data ◽

Fear Of Progression

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

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.e22020 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. e22020-e22020 ◽

Cited By ~ 1

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]

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Understanding predictors of continued long-term pediatric cancer care across the region: A report from the Consortium for New England Childhood Cancer Survivors

Pediatric Blood & Cancer ◽

10.1002/pbc.26564 ◽

2017 ◽

Vol 64 (10) ◽

pp. e26564 ◽

Cited By ~ 4

Author(s):

Jennifer J. G. Welch ◽

Lisa B. Kenney ◽

Priya Hirway ◽

G. Naheed Usmani ◽

Nina Kadan-Lottick ◽

...

Keyword(s):

Cancer Survivors ◽

New England ◽

Childhood Cancer ◽

Pediatric Cancer ◽

Cancer Care ◽

Childhood Cancer Survivors

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Feasibility and acceptability of a remotely administered computerized intervention to address cognitive late effects among childhood cancer survivors

Neuro-Oncology Practice ◽

10.1093/nop/npu036 ◽

2015 ◽

Vol 2 (2) ◽

pp. 78-87 ◽

Cited By ~ 13

Author(s):

Lauren E. Cox ◽

Jason M. Ashford ◽

Kellie N. Clark ◽

Karen Martin-Elbahesh ◽

Kristina K. Hardy ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Lymphoblastic Leukemia ◽

Childhood Cancer Survivors ◽

Pediatric Cancer Survivors ◽

Computerized Intervention ◽

Close Proximity ◽

Treatment Medication ◽

Almost All ◽

At Home

Abstract Background Childhood cancer survivors frequently develop working memory (WM) deficits as a result of disease and treatment. Medication-based and therapist-delivered interventions are promising but have limitations. Computerized interventions completed at home may be more appealing for survivors. We evaluated the feasibility and acceptability of a remotely administered, computerized WM intervention (Cogmed) for pediatric cancer survivors using a single-blind, randomized, wait-list control design. Methods Of 80 qualifying patients, 12 were excluded or declined to participate. Participants randomized to intervention (n = 34/68) included survivors of childhood brain tumors (32%) or acute lymphoblastic leukemia (ALL; 68%) between the ages of 8 and 16 years (x¯ = 12.2) who were at least 1 year post therapy (x¯ = 5.0). The majority of brain tumor participants were treated with cranial radiation therapy (72.7%), whereas most of the ALL participants were treated with chemotherapy only (87%). Participants completed 25 WM training sessions over 5–9 weeks at home with weekly phone-based coaching. Results Participants lived in 16 states. Compliance was strong, with 30 of the 34 participants (88%) completing intervention. Almost all participants completed pre- and postintervention neuroimaging exams (91% and 93%, respectively). Families had the necessary skills to utilize the computer program successfully. Caregivers reported they were generally able to find time to complete training (63%), viewed training as beneficial (70%), and would recommend this intervention to others (93%). Conclusions Cogmed is a feasible and acceptable intervention for childhood cancer survivors. It is a viable option for survivors who do not live in close proximity to cancer care centers. Efficacy and neural correlates of change are currently being evaluated.

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