9 results on '"Long-term follow-up care"'
Search Results
2. From long-term follow-up Recommendations for clinical practice to plain language summaries for childhood, adolescent, and young adult cancer survivors
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Selina R. van den Oever, Tessa Fuchs, Gill A. Levitt, Riccardo Haupt, Renée L. Mulder, Ana Amariutei, Edit Bardi, Tom Becker, Morven Brown, Hannah Gsell, Jaap den Hartogh, Samira Essiaf, Monica Muraca, Emma Potter, Carina Schneider, Elaine Sugden, Zuzana Tomášiková, Herma Vermeulen, Leontien C.M. Kremer, Roderick Skinner, and Helena J.H. van der Pal
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Patient information ,paediatric oncology ,long-term follow-up care ,survivorship ,Neoplasms. Tumors. Oncology. Including cancer and carcinogens ,RC254-282 - Abstract
Background: Having sufficient knowledge of cancer diagnosis, treatment and late effects in survivors of childhood, adolescent, and young adult (CAYA) cancer is important for effective self-management and optimising health outcomes. Therefore, in collaboration with different stakeholders, the PanCare PLAIN Information Group converted the PanCareFollowUp Recommendations for late effects surveillance into information summaries that are Person-centred, written in Lay language, Accessible, Internationally relevant, and Navigable (PLAIN). Methods: The PanCare PLAIN Information Group, comprising 21 stakeholders from seven European countries, collaborated to provide concise information for survivors and their families. The aim was to deliver PLAIN summaries that are clear and accessible for the majority of survivors, while providing links to additional sources of information. The PLAIN summaries were drafted by the PanCare PLAIN Information Group and subjected to two internal and one external consultation round, the latter involving experts, CAYA cancer survivors and parents/caregivers. Results: In total, 45 PLAIN summaries were developed, each corresponding to one of the PanCareFollowUp Recommendations for late effects surveillance. The summaries provide information about late effects, personal health risks, important symptoms and signs, recommended surveillance strategies, possible referral and treatment options, and self-care. Conclusions: The PLAIN summaries are meant to increase knowledge in survivors and their families, while they may also inform healthcare professionals. Along with their translations, the PLAIN summaries will be made freely available on the PanCare website, with a link provided on the European Network of Youth Cancer Survivors information platform. In addition, they will become and integral part of the Survivorship Passport.
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- 2024
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3. Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study.
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Viola, Adrienne S., Levonyan-Radloff, Kristine, Masterson, Margaret, Manne, Sharon L., Hudson, Shawna V., and Devine, Katie A.
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SELF-management (Psychology) ,YOUNG adults ,CHILDHOOD cancer ,MOBILE health ,MEDICAL care ,MOBILE apps - Abstract
Background: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer. [ABSTRACT FROM AUTHOR]
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- 2022
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4. Childhood cancer survivorship care during the COVID-19 pandemic
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van den Oever, Selina R, Pluijm, Saskia M F, Skinner, Rod, Glaser, Adam, Mulder, Renée L, Armenian, Saro, Bardi, Edit, Berger, Claire, Ehrhardt, Matthew J, Gilleland Marchak, Jordan, Haeusler, Gabrielle M, Hartogh, Jaap den, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib, Mohamed, Nathan, Paul C, Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeanette F, Zadravec Zaletel, Lorna, van Dalen, Elvira C, van der Pal, Helena J H, Hudson, Melissa M, Kremer, Leontien C M, IGHG COVID-19 working group, Paediatric Oncology, CCA - Cancer Treatment and Quality of Life, ARD - Amsterdam Reproduction and Development, and Paediatrics
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Paediatric oncology ,Oncology (nursing) ,Long-term follow-up care ,COVID-19 ,BIOMEDICINA I ZDRAVSTVO. Kliničke medicinske znanosti. Pedijatrija ,Article ,Oncology ,Cancer Survivors ,Neoplasms ,BIOMEDICINE AND HEALTHCARE. Clinical Medical Sciences. Pediatrics ,Humans ,Survivors ,Child ,Childhood cancer ,Pandemics - Abstract
Purpose: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers. Methods: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends. Results: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12% to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors. Conclusions: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations., + ID der Publikation: unilu_56897 + Sprache: Englisch + Letzte Aktualisierung: 2022-01-24 15:04:24
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- 2022
5. The PanCareFollowUp Care Intervention: A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer
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Michel, Gisela, Roser, Katharina, Michel, Gisela, and Roser, Katharina
- Abstract
Background Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union–funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. Patients and methods The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. Results We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. Conclusions The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being., + ID der Publikation: unilu_56498 + Sprache: Englisch + Letzte Aktualisierung: 2022-01-10 14:17:33
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- 2022
6. Childhood cancer survivorship care during the COVID-19 pandemic: an international report of practice implications and provider concerns
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Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., Kremer, Leontien C. M., Van den Oever, Selina R., Pluijm, Saskia M. F., Skinner, Rod, Glaser, Adam, Mulder, Renée L., Armenian, Saro, Bardi, Edit, Berger, Claire, Erhardt, Matthew J., Gilleland Marchak, Jordan, Haeusler, Gabrielle M., den Hartogh, Jaap, Hjorth, Lars, Kepak, Tomas, Kriviene, Izolda, Langer, Thorsten, Maeda, Miho, Márquez-Vega, Catalina, Michel, Gisela, Muraca, Monica, Najib MU, Mohamed, Nathan, Paul C., Panasiuk, Anna, Prasad, Maya, Roganovic, Jelena, Uyttebroeck, Anne, Winther, Jeannette F., Zodravec Zaletel, Lorna, van Dalen, Elvira C., van der Pal, Helena, Hudson, Melissa M., and Kremer, Leontien C. M.
- Abstract
Purpose: Long-term follow-up (LTFU) care is essential to optimise health outcomes in childhood cancer survivors (CCS). We aimed to assess the impact of the COVID-19 pandemic on LTFU services and providers. Methods: A COVID-19 working group within the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) distributed a questionnaire to LTFU service providers in 37 countries across Europe, Asia, North America, Central/South America, and Australia. The questionnaire assessed how care delivery methods changed during the pandemic and respondents' level of worry about the pandemic's impact on LTFU care delivery, their finances, their health, and that of their family and friends. Results: Among 226 institutions, providers from 178 (79%) responded. Shortly after the initial outbreak, 42% of LTFU clinics closed. Restrictions during the pandemic resulted in fewer in-person consultations and an increased use of telemedicine, telephone, and email consultations. The use of a risk assessment to prioritise the method of LTFU consultation for individual CCS increased from 12% to 47%. While respondents anticipated in-person consultations to remain the primary method for LTFU service delivery, they expected significantly increased use of telemedicine and telephone consultations after the pandemic. On average, respondents reported highest levels of worry about psychosocial well-being of survivors. Conclusions: The pandemic necessitated changes in LTFU service delivery, including greater use of virtual LTFU care and risk-stratification to identify CCS that need in-person evaluations., + ID der Publikation: unilu_56897 + Sprache: Englisch + Letzte Aktualisierung: 2022-01-24 15:04:24
- Published
- 2022
7. Current Status and Physicians' Perspectives of Childhood Cancer Survivorship in Korea: A Nationwide Survey of Pediatric Hematologists/Oncologists.
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Lee JW, Yeo Y, Ju HY, Cho HW, Yoo KH, Sung KW, Koo HH, Jeong SM, Shin DW, Baek HJ, Kook H, Chung NG, Cho B, Kim YA, Park HJ, and Song YM
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- Child, Adult, Humans, Republic of Korea, Cancer Survivors, Neoplasms, Physicians, Oncologists
- Abstract
Background: Data on the status of long-term follow-up (LTFU) care for childhood cancer survivors (CCSs) in Korea is lacking. This study was conducted to evaluate the current status of LTFU care for CCSs and relevant physicians' perspectives., Methods: A nationwide online survey of pediatric hematologists/oncologists in the Republic of Korea was undertaken., Results: Overall, 47 of the 74 board-certified Korean pediatric hematologists/oncologists currently providing pediatric hematology/oncology care participated in the survey (response rate = 63.5%). Forty-five of the 47 respondents provided LTFU care for CCSs five years after the completion of primary cancer treatment. However, some of the 45 respondents provided LTFU care only for CCS with late complications or CCSs who requested LTFU care. Twenty of the 45 respondents oversaw LTFU care for adult CCSs, although pediatric hematologists/oncologists experienced more difficulties managing adult CCSs. Many pediatric hematologists/oncologists did not perform the necessary screening test, although CCSs had risk factors for late complications, mostly because of insurance coverage issues and the lack of Korean LTFU guidelines. Regarding a desirable LTFU care system for CCSs in Korea, 27 of the 46 respondents (58.7%) answered that it is desirable to establish a multidisciplinary CCSs care system in which pediatric hematologists/oncologists and adult physicians cooperate., Conclusion: The LTFU care system for CCS is underdeveloped in the Republic of Korea. It is urgent to establish an LTFU care system to meet the growing needs of Korean CCSs, which should include Korean CCSs care guidelines, provider education plans, the establishment of multidisciplinary care systems, and a supportive national healthcare policy., Competing Interests: The authors have no potential conflicts of interest to disclose., (© 2023 The Korean Academy of Medical Sciences.)
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- 2023
- Full Text
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8. The PanCareFollowUp Care Intervention:A European harmonised approach to person-centred guideline-based survivorship care after childhood, adolescent and young adult cancer
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Rebecca J. van Kalsbeek, Renée L. Mulder, Riccardo Haupt, Monica Muraca, Lars Hjorth, Cecilia Follin, Tomas Kepak, Katerina Kepakova, Anne Uyttebroeck, Marlies Mangelschots, Jeanette Falck Winther, Jacqueline J. Loonen, Gisela Michel, Edit Bardi, Line Elmerdahl Frederiksen, Jaap den Hartogh, Luzius Mader, Katharina Roser, Carina Schneider, Morven C. Brown, Melanie Brunhofer, Irene Göttgens, Rosella P.M.G. Hermens, Anita Kienesberger, Joke C. Korevaar, Roderick Skinner, Helena J.H. van der Pal, Leontine C.M. Kremer, Paediatric Oncology, CCA - Cancer Treatment and Quality of Life, and ARD - Amsterdam Reproduction and Development
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Quality of life ,Cancer Research ,Adolescent ,Long-term follow-up care ,Person-centred care ,610 Medicine & health ,Survivorship ,humanities ,Women's cancers Radboud Institute for Health Sciences [Radboudumc 17] ,Healthcare improvement science Radboud Institute for Health Sciences [Radboudumc 18] ,Cancer survivorship care ,Young Adult ,Oncology ,Cancer Survivors ,360 Social problems & social services ,Neoplasms ,Quality of Life ,Humans ,Survivors ,Shared decision-making ,Childhood cancer survivor - Abstract
Contains fulltext : 248815.pdf (Publisher’s version ) (Open Access) BACKGROUND: Long-term follow-up (LTFU) care, although endorsed, is not available for the majority of adult survivors of childhood, adolescence and young adult (CAYA) cancer. Barriers to implementation include lack of time, knowledge, personnel and funding. Sustainable solutions are urgently needed to address the needs of CAYA cancer survivors to improve the quality of life and reduce the burden of late effects on survivors, health care systems and society. The European Union-funded PanCareFollowUp project, initiated by the Pan-European Network for Care of Survivors after Childhood and Adolescent Cancer, was established to facilitate the implementation of person-centred survivorship care across Europe. PATIENTS AND METHODS: The PanCareFollowUp Care Intervention was co-developed with survivors as part of the PanCareFollowUp project. It is a person-centred approach to survivorship care, supported by guidelines and with flexibility to adapt to local health care settings. The Care Intervention consists of three steps: (1) previsit completion of a Survivor Questionnaire (by the survivor) and Treatment Summary (by the health care provider [HCP]), (2) a clinic visit including shared decision-making, and (3) a follow-up call to finalise the individualised Survivorship Care Plan. RESULTS: We developed the key components of the PanCareFollowUp Care Intervention: a PanCareFollowUp Survivor Questionnaire, Treatment Summary template, Survivorship Care Plan template, and educational materials for HCPs and survivors. Wide implementation of the PanCareFollowUp Care Intervention will be supported with a freely distributed Replication Manual on completion of the PanCareFollowUp project. CONCLUSIONS: The PanCareFollowUp Care Intervention will support the implementation of person-centred, guideline-based LTFU care in different health care settings across Europe to improve survivors' health and well-being.
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- 2022
9. Aftercare of Childhood Cancer Survivors in Switzerland: Protocol for a Prospective Multicenter Observational Study.
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Denzler S, Otth M, and Scheinemann K
- Abstract
Background: Most children and adolescents diagnosed with cancer become long-term survivors. For most of them, regular follow-up examinations to detect and treat late effects are necessary, especially in adulthood. The transition from pediatric to adult-focused follow-up care is a critical moment for childhood cancer survivors (CCSs); a substantial proportion of CCSs are lost to follow-up in this transition process and do not attend follow-up care in adulthood. This can have serious effects on survivors' health if late effects are not discovered in a timely fashion., Objective: In this study, we primarily assess the current follow-up situation, related needs, and knowledge of adolescent and young adult CCSs who have transitioned from pediatric to adult-focused follow-up care. As secondary objectives, we evaluate transition readiness, identify facilitating factors of transition and adherence to long-term follow-up (LTFU) care, and compare three different transition models., Methods: The Aftercare of Childhood Cancer Survivors (ACCS) Switzerland study is a prospective, multicenter, observational study that was approved by the ethics committee in February 2019. We are recruiting CCSs from three pediatric oncology centers and using questionnaires to answer the study questions., Results: To date, we have recruited 58 participants. The study is ongoing, and recruitment of participants will continue until January 2021., Conclusions: The ACCS study will provide information on CCSs' preferences and expectations for follow-up care and their transition into the adult setting. The results will help improve the LTFU care and cancer knowledge of CCSs and subsequently enhance adherence to follow-up care and reduce loss to follow-up in adulthood., Trial Registration: ClinicalTrials.gov NCT04284189; https://clinicaltrials.gov/ct2/show/NCT04284189?id=NCT04284189., International Registered Report Identifier (irrid): PRR1-10.2196/18898., (©Sibylle Denzler, Maria Otth, Katrin Scheinemann. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 26.08.2020.)
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- 2020
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