scholarly journals Methodology of the DCCSS later fatigue study: a model to investigate chronic fatigue in long-term survivors of childhood cancer

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Adriaan Penson ◽  
Sylvia van Deuren ◽  
Ewald Bronkhorst ◽  
Ellen Keizer ◽  
Tom Heskes ◽  
...  

Abstract Background A debilitating late effect for childhood cancer survivors (CCS) is cancer-related fatigue (CRF). Little is known about the prevalence and risk factors of fatigue in this population. Here we describe the methodology of the Dutch Childhood Cancer Survivor Late Effect Study on fatigue (DCCSS LATER fatigue study). The aim of the DCCSS LATER fatigue study is to examine the prevalence of and factors associated with CRF, proposing a model which discerns predisposing, triggering, maintaining and moderating factors. Triggering factors are related to the cancer diagnosis and treatment during childhood and are thought to trigger fatigue symptoms. Maintaining factors are daily life- and psychosocial factors which may perpetuate fatigue once triggered. Moderating factors might influence the way fatigue symptoms express in individuals. Predisposing factors already existed before the diagnosis, such as genetic factors, and are thought to increase the vulnerability to develop fatigue. Methodology of the participant inclusion, data collection and planned analyses of the DCCSS LATER fatigue study are presented. Results Data of 1955 CCS and 455 siblings was collected. Analysis of the data is planned and we aim to start reporting the first results in 2022. Conclusion The DCCSS LATER fatigue study will provide information on the epidemiology of CRF and investigate the role of a broad range of associated factors in CCS. Insight in associated factors for fatigue in survivors experiencing severe and persistent fatigue may help identify individuals at risk for developing CRF and may aid in the development of interventions.

Author(s):  
Mona L. Peikert ◽  
Laura Inhestern ◽  
Konstantin A. Krauth ◽  
Gabriele Escherich ◽  
Stefan Rutkowski ◽  
...  

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.


Author(s):  
L. M. E. van Erp ◽  
H. Maurice-Stam ◽  
L. C. M. Kremer ◽  
W. J. E. Tissing ◽  
H. J. H. van der Pal ◽  
...  

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.


2021 ◽  
Author(s):  
Anne Sophie Lind Helligsoe ◽  
Louise Tram Henriksen ◽  
Line Kenborg ◽  
Christian Dehlendorff ◽  
Jeanette Falck Winther ◽  
...  

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Ariane Levesque ◽  
Maxime Caru ◽  
Michel Duval ◽  
Caroline Laverdière ◽  
Serge Sultan

Cancer ◽  
2021 ◽  
Author(s):  
Sylvia Deuren ◽  
Adriaan Penson ◽  
Eline Dulmen‐den Broeder ◽  
Martha A. Grootenhuis ◽  
Margriet Heiden‐van der Loo ◽  
...  

2018 ◽  
Vol 58 (2) ◽  
pp. 227-231 ◽  
Author(s):  
Camilla T. Clausen ◽  
Henrik Hasle ◽  
Anna S. Holmqvist ◽  
Laura Madanat-Harjuoja ◽  
Laufey Tryggvadottir ◽  
...  

Hematology ◽  
2005 ◽  
Vol 2005 (1) ◽  
pp. 507-515 ◽  
Author(s):  
Smita Bhatia

Abstract The last three decades have seen tremendous improvements in survival of children diagnosed with cancer, with the 5-year survival rate approaching 80%. This improvement in survival has resulted in a growing population of childhood cancer survivors. Use of cancer therapy at an early age can produce complications that may not become apparent until years later. Approximately two thirds of the survivors of childhood cancer will experience at least one late effect, and about one third will experience a late effect that is severe or life threatening. Long-term complications in childhood cancer survivors, such as impairment in growth and development, neurocognitive dysfunction, cardiopulmonary compromise, endocrine dysfunction, renal impairment, gastrointestinal dysfunction, musculoskeletal sequelae, and subsequent malignancies, are related not only to the specific therapy employed, but may also be determined by individual host characteristics. We review the known late effects of treatment in survivors of childhood cancer in order to suggest reasonable starting points for evaluation of specific long-term problems in this unique but growing population. The Children’s Oncology Group (COG) has developed risk-based, exposure-related guidelines for follow-up care that are available at www.surivorshipguidelines.org.


2008 ◽  
Author(s):  
Lauren A. Mikula ◽  
Julie Snyder ◽  
Anai M. Cuadra ◽  
Maria L. Goldman ◽  
Wendy E. Sulc ◽  
...  

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