European Survey on Standards of Care in paediatric oncology centres

Kowalczyk, Jerzy; Samardakiewicz, Marzena; Pritchard‐Jones, Kathy; Ladenstein, Ruth; Essiaf, Samira; Fitzgerald, E. J.; Petrarulo, Giulia; Vassal, Gilles

doi:10.1016/j.ejca.2016.03.073

Cited by 29 publications

(24 citation statements)

References 9 publications

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“…First, it is important to incorporate psychosocial screening and assistance in clinical practice, also after completion of the child's cancer treatment, to recognize parents in need. This recommendation has already been made in the Standards of Psychosocial Care for Parents of Children with Cancer (Kearney, Salley, & Muriel, 2015) and the European Standards of Care for Children with Cancer (Kowalczyk et al, 2014), but is still not routinely available in many hospitals (Jones et al, 2018;Kowalczyk et al, 2016). We argue, based on the results of this study that screening should include a sleep assessment as well.…”

Section: Discussionmentioning

confidence: 86%

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

Rensen

Steur

Schepers

et al. 2019

European Journal of Psychotraumatology

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Background : Parents of children with cancer are at risk for sleep problems. If these problems persist, an important perpetuating factor might be ongoing parental distress. Objective : The aim of this study is to assess the prevalence of sleep problems and the concurrence with distress in parents of children treated for cancer, and to identify predictors of this symptom clustering. Method : Parents completed the Medical Outcomes Study (MOS) Sleep Scale and Distress Thermometer for Parents (DT-P). Clinically relevant sleep problems were defined as a score >1SD above the norm and clinical distress as a thermometer score above the established cut-off of 4. Four parent categories were constructed: neither sleep problems nor distress; no distress but sleep problems; no sleep problems but distress; both sleep problems and distress. Predictive determinants (sociodemographic, medical, psychosocial) for each category were assessed with multilevel multinomial logistic regression. Results : Parents (202 mothers and 150 fathers) of 231 children with different cancers participated. Mean time since diagnosis was 3.3 ± 1.4 years (90% off-treatment). The prevalence of sleep problems was 37%. Fifty percent of parents reported neither sleep problems nor distress, 9% had only sleep problems, 13% only distress, and 28% reported both. Compared to parents without sleep problems or distress, parents who reported both were more likely to report parenting problems (OR 4.4, [2.2–9.1]), chronic illness (OR 2.8, [1.2–6.5]), insufficient social support (OR 3.7, [1.5–9.1]), pre-existent sleep problems (OR 6.2, [2.0–18.6]) and be female (OR 1.8, [1.1–4.2]). Conclusions : Sleep problems are common in parents of children treated for cancer, and occur mostly in the presence of clinical distress. Future research must show which interventions are most effective in this group: mainly targeted at sleep improvement or with prominent roles for stress management or trauma processing.

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Section: Discussionmentioning

confidence: 86%

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

Rensen

Steur

Schepers

et al. 2019

European Journal of Psychotraumatology

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“…There are 20 specialized hospitals for childhood cancer, known as principal treatment centers, and over 80 shared care centers, known as Paediatric Oncology Shared Care Units. In Europe, similar but less detailed standards of care for children with cancer were published in 2013, with an international survey of the extent of their implementation published in 2016 . All standards recommend coordinated patient care and international collaboration in research.…”

Section: Discussionmentioning

confidence: 99%

Childhood cancer incidence and survival in Japan and England: A population‐based study (1993‐2010)

et al. 2017

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The present study aimed to compare cancer incidence and trends in survival for children diagnosed in Japan and England, using population‐based cancer registry data. The analysis was based on 5192 children with cancer (age 0‐14 years) from 6 prefectural cancer registries in Japan and 21 295 children diagnosed in England during 1993‐2010. Differences in incidence rates between the 2 countries were measured with Poisson regression models. Overall survival was estimated using the Kaplan–Meier method. Incidence rates for Hodgkin lymphoma, renal tumors and Ewing sarcomas in England were more than twice as high as those in Japan. Incidence of germ cell tumors, hepatic tumors, neuroblastoma and acute myeloid leukemia (AML) was higher in Japan than in England. Incidence of all cancers combined decreased in Japan throughout the period 1993 to 2010, which was mainly explained by a decrease in registration of neuroblastoma in infants. For many cancers, 5‐year survival improved in both countries. The improvement in survival in chronic myeloid leukemia (CML) was particularly dramatic in both countries. However, 5‐year survival remained less than 80% in 2005‐2008 in both countries for AML, brain tumors, soft tissue sarcomas, malignant bone tumors and neuroblastoma (age 1‐14 years). There were significant differences in incidence of several cancers between countries, suggesting variation in genetic susceptibility and possibly environmental factors. The decrease in incidence for all cancers combined in Japan was related to the cessation of the national screening program for neuroblastoma. The large improvement in survival in CML coincided with the introduction of effective therapy (imatinib).

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“…With the development of ERNs and other centres of excellence, however, it will be important to make sure that centralisation of care does not create additional barriers to care for patients and that they work in close networks with local practitioners as part of a multidisciplinary care team adhering to the same protocols and guidelines. This networked model of care is already being implemented for children and adolescents with cancer, and the European Society for Paediatric Oncology has defined the European Standards of Care for Children with Cancer [34].…”

Section: Local Uptakementioning

confidence: 99%

Identifying critical steps towards improved access to innovation in cancer care: a European CanCer Organisation position paper

Aapro

Astier

Audisio

et al. 2017

European Journal of Cancer

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In recent decades cancer care has seen improvements in the speed and accuracy of diagnostic procedures; the effectiveness of surgery, radiation therapy and medical treatments; the power of information technology; and the development of multidisciplinary, specialist-led approaches to care. Such innovations are essential if we are to continue improving the lives of cancer patients across Europe despite financial pressures on our healthcare systems. Investment in innovation must be balanced with the need to ensure the sustainability of healthcare budgets, and all health professionals have a responsibility to help achieve this balance. It requires scrutiny of the way care is delivered; we must be ready to discontinue practices or interventions that are inefficient, and prioritise innovations that may deliver the best outcomes possible for patients within the limits of available resources. Decisions on innovations should take into account their long-term impact on patient outcomes and costs, not just their immediate costs. Adopting a culture of innovation requires a multidisciplinary team approach, with the patient at the centre and an integral part of the team. It must take a whole-system and whole-patient perspective on cancer care and be guided by high-quality real-world data, including outcomes relevant to the patient and actual costs of care; this accurately reflects the impact of any innovation in clinical practice. The European CanCer Organisation is committed to working with its member societies, patient organisations and the cancer community at large to find sustainable ways to identify and integrate the most meaningful innovations into all aspects of cancer care.

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European Survey on Standards of Care in paediatric oncology centres

Cited by 29 publications

References 9 publications

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

Concurrence of sleep problems and distress: prevalence and determinants in parents of children with cancer

Childhood cancer incidence and survival in Japan and England: A population‐based study (1993‐2010)

Identifying critical steps towards improved access to innovation in cancer care: a European CanCer Organisation position paper

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