European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

Kalsbeek, Rebecca J. van; Pal, Helena J.H. van der; Kremer, Leontien C. M.; Bárdi, Edit; Brown, Morven C.; Effeney, Rachel; Winther, Jeanette Falck; Follin, Cecilia; Hartogh, Jaap den; Haupt, Riccardo; Hjorth, Lars; Kepák, Tomáš; Kepakova, Katerina; Levitt, Gill; Loonen, Jacqueline; Mangelschots, Marlies; Muraca, Monica; Renard, Marleen; Sabic, Harun; Schneider, Carina; Uyttebroeck, Anne; Skinner, Roderick; Mulder, Renée L.

doi:10.1016/j.ejca.2021.06.004

Cited by 45 publications

(36 citation statements)

References 24 publications

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“…While the composition of the teams turned out to be heterogeneous, in most centers it included endocrinologists, oncologists, and radiologists. Some discrepancies emerged in the evaluation of known risk factors for GH defect in BTS (6,30) including time of follow-up, hydrocephalus and gender. In fact, only 58% and 61% of specialists considered the duration of follow-up and the presence of hydrocephalus as independent risk factors despite the odds ratio have been reported to be 1.14 and 12.06 in a large nationwide cohort (9).…”

Section: Discussionmentioning

confidence: 99%

Expert Opinion on the Management of Growth Hormone Deficiency in Brain Tumor Survivors: Results From an Italian Survey

et al. 2022

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BackgroundGrowth hormone deficiency (GHD) is the first and most common endocrine complication in pediatric brain tumor survivors (BTS). GHD can occur due to the presence of the tumor itself, surgery, or cranial radiotherapy (CRT).AimsThis study aimed to evaluate management and adherence to current guidelines of the Italian centers engaged in the diagnosis and follow-up of GHD patients with BTS.MethodsA multidisciplinary scientific board of pediatric endocrinologists, oncologists and radiologists with neuroimaging expertise discussed and reviewed the main issues relating to the management of GHD in pediatric BTS and developed a survey. The survey included questions relating to organizational aspects, risk factors, diagnosis, definition of stable disease, and treatment. The online survey was sent to an expanded panel of specialists dedicated to the care of pediatric BTS, distributed among the three specialty areas and throughout the country (23 Italian cities and 37 Centers).ResultsThe online questionnaire was completed by 86.5% (32 out of 37) of the Centers involved. Most had experience in treating these patients, reporting that they follow more than 50 BTS patients per year. Responses were analyzed descriptively and aggregated by physician specialty. Overall, the results of the survey showed some important controversies in real life adherence to the current guidelines, with discrepancies between endocrinologists and oncologists in the definition of risk factors, diagnostic work-up, decision-making processes and safety. Furthermore, there was no agreement on the neuroimaging definition of stable oncological disease and how to manage growth hormone therapy in patients with residual tumor and GHD.ConclusionsThe results of the first Italian national survey on the management of GHD in BTS highlighted the difference in management on some important issues. The time to start and stop rhGH treatment represent areas of major uncertainty. The definition of stable disease remains critical and represents a gap in knowledge that must be addressed within the international guidelines in order to increase height and to improve metabolic and quality of life outcomes in cancer survivors with GHD.

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Section: Discussionmentioning

confidence: 99%

Expert Opinion on the Management of Growth Hormone Deficiency in Brain Tumor Survivors: Results From an Italian Survey

et al. 2022

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“…A care plan represents a relevant opportunity because it provides patients and their caregivers and general practitioners with a detailed summary of the treatment received, of potential late or long-term side effects, and recommendations about the type and timing of any test useful for early diagnosis of subclinical effects that could become clinically relevant in the future and represent new comorbidities, as well as proposals for the application of a correct lifestyle. 72,73 A survivorship care plan is a detailed plan for a patient's follow-up care, after the end of treatment. 74,75 For cancer patients, an organ-and gender-specific plan is based on the type of cancer and treatment the patient received.…”

Section: Survivorship Care Planmentioning

confidence: 99%

Cancer Cure and Consequences on Survivorship Care: Position Paper from the Italian Alliance Against Cancer (ACC) Survivorship Care Working Group

Maso¹,

Santoro²,

Iannelli³

et al. 2022

CMAR

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A multidisciplinary panel of experts and cancer patients developed a position paper to highlight recent evidence on "cancer cure" (ie, the possibility of achieving the same life expectancy as the general population) and discuss the consequences of this concept on follow-up and rehabilitation strategies. The aim is to inform clinicians, patients, and health-care policy makers about strategies of survivorship care for cured cancer patients and consequences impacting patient lives, spurring public health authorities and research organizations to implement resources to the purpose. Two identifiable, measurable, and reproducible indicators of cancer cure are presented. Cure fraction (CF) is >60% for breast and prostate cancer patients, >50% for colorectal cancer patients, and >70% for patients with melanoma, Hodgkin lymphoma, and cancers of corpus uteri, testis (>90%), and thyroid. CF was >65% for patients diagnosed at ages 15-44 years and 30% for those aged 65-74 years. Time-to-cure was consistently <1 year for thyroid and testicular cancer patients and <10 years for patients with colorectal and cervical cancers, melanoma, and Hodgkin lymphoma. The working group agrees that the evidence allows risk stratification of cancer patients and implementation of personalized care models for timely diagnosis, as well as treatment of possible cancer relapses or related long-term complications, and preventive measures aimed at maintaining health status of cured patients. These aspects should be integrated to produce an appropriate follow-up program and survivorship care plan(s), avoiding stigma and supporting return to work, to a reproductive life, and full rehabilitation. The "right to be forgotten" law, adopted to date only in a few European countries, may contribute to these efforts for cured patients.

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“…Cancer specialists in some of the other centers had experience with the survivorship passport as a paper booklet piloted in the University Hospitals Leuven (Belgium) [4], or as an end of treatment report in MS Word i.e., HULAFE (Spain), or as a report in the EMR system of the hospital, i.e., VULSK (Lithuania). However, IT-specialists in the IT departments, e.g., Gaslini, were mostly unaware what the SurPass requirements for integration to the EMR were.…”

Section: Awareness Of the Surpass Platform And Its Functionalitymentioning

confidence: 99%

“…The SurPass provides an overview of all relevant personal health data related to the cancer treatment of CCS (e.g., demographics, cancer diagnosis, therapeutic management etc.) in a Treatment Summary together with a personalized Survivorship Care Plan, based on international evidence-based clinical guidelines [1,2,3,4]. PanCareSurPass (https://www.pancaresurpass.eu/) aims to develop and deploy a new version of SurPass (v2.0), which allows for semi-automated data entry by integrating SurPass to EMRs at treatment facilities, regional or national Electronic Health Records (EHRs), and cancer registries.…”

Section: Introductionmentioning

confidence: 99%

Factors Influencing Implementation of the Survivorship Passport: The IT Perspective

Chronaki

Charalambous

Cangioli

et al. 2022

Studies in Health Technology and Informatics

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Compared to the general population, childhood cancer survivors represent a vulnerable population as they are at increased risk of developing health problems, known as late effects, resulting in excess morbidity and mortality. The Survivorship Passport aims to capture key health data about the survivors and their treatment, as well as personalized recommendations and a care plan with the aim to support long-term survivorship care. The PanCareSurPass (PCSP) project building on the experience gained in an earlier implementation in Giannina Gaslini Institute, Italy, will implement and rigorously assess an integrated, HL7 FHIR based, implementation of the Survivorship Passport. The six implementation countries, namely Austria, Belgium, Germany, Italy, Lithuania, and Spain, are supported by different national or regional digital health infrastructures and Electronic Medical Record (EMR) systems. Semi structured interviews were carried out to explore potential factors affecting implementation, identify use cases, and coded data that can be semi-automatically transferred from the EMR to SurPass. This paper reflects on findings of these interviews and confirms the need for a multidisciplinary and multi-professional approach towards a sustainable and integrated large-scale implementation of the Survivorship Passport across Europe.

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European PanCareFollowUp Recommendations for surveillance of late effects of childhood, adolescent, and young adult cancer

Cited by 45 publications

References 24 publications

Expert Opinion on the Management of Growth Hormone Deficiency in Brain Tumor Survivors: Results From an Italian Survey

Expert Opinion on the Management of Growth Hormone Deficiency in Brain Tumor Survivors: Results From an Italian Survey

Cancer Cure and Consequences on Survivorship Care: Position Paper from the Italian Alliance Against Cancer (ACC) Survivorship Care Working Group

Factors Influencing Implementation of the Survivorship Passport: The IT Perspective

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