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A Concise and Practical Framework for the Development and Usability Evaluation of Patient Information Websites

S.L. Knijnenburg, L.C. Kremer, M.W.M. Jaspers, L.W. Peute
2015 Applied Clinical Informatics  
In the current study we apply a subset of the WDMHC framework in a case study concerning the development and evaluation of a website aimed at childhood cancer survivors (CCS).  ...  A concise and practical framework for the development and usability evaluation of patient information websites. Appl Clin Inf 2015; 6: 383–399  ...  Acknowledgements We would like to thank all participants in this study for their support in the development and evaluation of the website.  ... 
doi:10.4338/aci-2014-11-ra-0109 pmid:26171083 pmcid:PMC4493338 fatcat:criorzkoi5b2pmc6gvq4d6gjmi

Late effects awareness website for pediatric survivors of acute lymphocytic leukemia

Hillary Klonoff-Cohen, Ana Navarro, Elizabeth A. Klonoff, John W Glod
2018 PLoS ONE  
LEAP 3 AHEAD is the first interactive website for acute lympocytic leukemia childhood cancer survivors and families, as well as physicians, and the public to: a) increase awareness about risks, detection  ...  The two main objectives of this research are to: 1) Examine the existence of all web-based resources for childhood cancer survivors with acute lymphocytic leukemia which focus on medical and psychological  ...  Mounika Polavarapu, MBBS, MPH, University of Illinois Urbana-Champaign, for her expertise, technical assistance, and editing. Author Contributions Conceptualization: Hillary Klonoff-Cohen.  ... 
doi:10.1371/journal.pone.0193141 pmid:29451924 pmcid:PMC5815604 fatcat:hs3qoyutzzc5zn4qidqwibove4

Family doctor-driven follow-up for adult childhood cancer survivors supported by a web-based survivor care plan

R. Blaauwbroek, H. A. Barf, K. H. Groenier, L. C. Kremer, K. van der Meer, W. J. E. Tissing, A. Postma
2011 Journal of cancer survivorship  
Purpose To facilitate family doctor-driven follow-up for adult childhood cancer survivors, we developed a survivor care plan (SCP) for adult survivors and their family doctors.  ...  Methods The SCP was accessible for survivors and their family doctors on a secure website and as a printed booklet.  ...  Jef Everts (UMCG, The Netherlands) for their technical assistance and the design of the website.  ... 
doi:10.1007/s11764-011-0207-5 pmid:22124938 pmcid:PMC3321136 fatcat:lq6ofxeiwbbknjb22clnq2sloy

Developing a Healthy Web-Based Cookbook for Pediatric Cancer Patients and Survivors: Rationale and Methods

Rhea Li, Margaret Raber, Joya Chandra
2015 JMIR Research Protocols  
Objective: The objective of this study was to document the development of a Web-based cookbook of healthy recipes and nutrition resources to help enable pediatric cancer patients and survivors to lead  ...  serve cancer patients, survivors, and the general public.  ...  The authors would also like to thank e-Health Technology for website development and Kay Greer for administrative support.  ... 
doi:10.2196/resprot.3777 pmid:25840596 pmcid:PMC4397390 fatcat:4xiiqkvhbzhpja642ez7tzwn44

Advancing Survivors' Knowledge (ASK) about skin cancer study: study protocol for a randomized controlled trial

Casey L Daniel, Gregory T Armstrong, Robyn R Keske, Jessica A Davine, Aaron J McDonald, Kim M Sprunck-Harrild, Catherine Coleman, Sebastien J Haneuse, Ann C Mertens, Karen M Emmons, Ashfaq A Marghoob, Elena B Elkin (+3 others)
2015 Trials  
The goal of the present study is to increase rates of skin self-examinations and clinical skin examinations among adult survivors of childhood cancer treated with radiation.  ...  Discussion: The current study addresses barriers to screening in this population by providing educational and motivational information for both survivors and physicians regarding the value of periodic  ...  There are over 420,000 estimated survivors of childhood cancer in the United States [2] . In a study of 1,713 childhood cancer survivors using clinical evaluations, Hudson et al.  ... 
doi:10.1186/s13063-015-0637-x pmid:25873142 pmcid:PMC4392639 fatcat:oecjbsip6jhivn3lxk52s43t2a

Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan

Kevin C. Oeffinger, Melissa M. Hudson, Ann C. Mertens, Stephanie M. Smith, Pauline A. Mitby, Debra A. Eshelman-Kent, Jennifer S. Ford, Judith K. Jones, Sharmila Kamani, Leslie L. Robison
2010 Pediatric Blood & Cancer  
In addition, survivors' primary physicians were contacted and provided patient-specific information and a web-based Virtual Information Center was made available for both survivors and physicians.  ...  Procedure-A prospective one-arm study was conducted among a random sample of 72 HL survivors, ages 27 to 55, participating in the Childhood Cancer Survivor Study (CCSS) who were at increased risk for breast  ...  In addition, we would like to acknowledge the assistance and expertise of Net eSolutions Corporation in developing the Cancer Survivor Virtual Information Center website and Laura Snell, Christine Jacox  ... 
doi:10.1002/pbc.22696 pmid:21370417 pmcid:PMC3749088 fatcat:jkcop3jym5exvflfkizyte6s3a

Childhood cancer survivor cohorts in Europe

Jeanette F. Winther, Line Kenborg, Julianne Byrne, Lars Hjorth, Peter Kaatsch, Leontien C. M. Kremer, Claudia E. Kuehni, Pascal Auquier, Gérard Michel, Florent de Vathaire, Riccardo Haupt, Roderick Skinner (+21 others)
2015 Acta Oncologica  
Childhood cancer survivor cohorts in Europe.  ...  Considerable advantages exist to study late effects in individuals treated for childhood cancer in a European context, including the complementary advantages of large population-based cancer registries  ...  Discussion a growing number of large national childhood cancer survivor cohorts have been established in Europe over recent decades evaluating a broad range of late effects. other cohorts are being developed  ... 
doi:10.3109/0284186x.2015.1008648 pmid:25813473 fatcat:3jh54gxy2fhx7pno4fjwpwmwvi

Adolescent and young adult perceptions of cancer survivor care and supportive programming

Karen Wasilewski-Masker
2016 The Journal of Community and Supportive Oncology  
Methods Using a community-based approach, 157 AYA childhood cancer survivors (aged 15-30 years) completed a program evaluation survey to assess perceptions of the importance of survivor patient care services  ...  Many survivors have ongoing needs for support and information that are not being met. Objective To conduct a program evaluation to identify AYAs' perceptions of survivor care services.  ...  the need to develop and implement supportive care for young adult survivors of childhood cancer.  ... 
doi:10.12788/jcso.0228 fatcat:ipct5wledvbyvcyqggvogcbw5e

Predicting Adverse Health Outcomes in Long-Term Survivors of a Childhood Cancer

Chaya Moskowitz, Kevin Oeffinger
2014 Children  
Here, we review existing absolute risk prediction models that are directly applicable to survivors of a childhood cancer, discuss the concepts and interpretation of absolute risk models, and examine ways  ...  Absolute risk models that project a personalized risk of developing a health outcome can be useful in patient counseling, in designing intervention studies, in forming prevention strategies, and in deciding  ...  Author Contributions C.S.M. and K.C.O. conceived of the idea and drafted the manuscript.  ... 
doi:10.3390/children1020063 pmid:26236650 pmcid:PMC4521414 fatcat:bpsvxoolsvczzbqgc535ztxqhm

Development and Usability Evaluation of a Facebook-based Intervention Program for Childhood Cancer Patients: A Multi-Methods Study (Preprint)

Bu Kyung Park, Ji Yoon Kim, Valerie E. Rogers
2020 Journal of Medical Internet Research  
A Facebook-based "Healthy Teens for Soaam" (a Korean term for childhood cancers) program was developed to help improve knowledge and self-management practices of teens with cancer related to their disease  ...  We actively worked with current childhood cancer patients and survivors to develop and improve this program, achieved good usability, and met the expressed needs and preferences of target end users.  ...  Acknowledgments This study was supported by a National Research Foundation of Korea (NRF) grant funded by the Korean government (MISP and MSIT; 2016R1C1B2013649 and 2020R1C1C1010602).  ... 
doi:10.2196/18779 pmid:32720897 fatcat:hxhatfqrx5hcbbvwabp6hs44di

Long-term survivors of childhood cancer: cure and care—the Erice Statement (2006) revised after 10 years (2016)

Momcilo Jankovic, Riccardo Haupt, John J. Spinetta, Joern D. Beck, Julianne Byrne, Gabriele Calaminus, Herwig Lackner, Andrea Biondi, Kevin Oeffinger, Melissa Hudson, Roderick Skinner, Gregory Reaman (+20 others)
2018 Zenodo  
Purpose: The number of persons who have successfully completed treatment for a cancer diagnosed during childhood and whohave entered adulthood is increasing over time, and former patients will become aging  ...  Thecareof achild with cancer should include complete and honest information for parents and the child.  ...  Carla Manganini for her excellent secretarial and editorial assistance.  ... 
doi:10.5281/zenodo.3931676 fatcat:p6vp7nla4ngapkt4bg3nfyzjbe

Late effects in adult survivors of childhood cancer: considerations for the general practitioner

Debra Schmidt, Lynnette Anderson, Kristin Bingen, Jennifer Hoag, Mary Jo Kupst, Anne B Warwick
2010 Wisconsin Medical Journal  
with adult survivors of childhood cancer.  ...  Childhood cancer survivorship is a national public health priority, with an increasing number of survivors who face late effects from both disease and treatment.  ...  Acknowledgments: The authors wish to thank the Oncology and BMT teams for their support and give a special thank you to Next Steps Clinic patients and their families for sharing their experiences with  ... 
pmid:20443329 fatcat:e5x6x232krd3lp3l3hil5f4zbm

Searching for Survivor-Specific Services at NCI-Designated Comprehensive Cancer Centers: A Qualitative Assessment

Betsy Rolland, Jordan Eschler
2018 The Journal of the National Comprehensive Cancer Network  
NCI-designated Comprehensive Cancer Centers (CCCs) serve a unique role in the delivery of cancer care because they not only provide care but also serve as a model for community oncologists and clinics  ...  through the development and dissemination of standards of care.  ...  CCCs are in a position to impact the lives of cancer survivors by minimizing the amount of information-seeking work patients and their loved ones must perform.  ... 
doi:10.6004/jnccn.2018.7019 pmid:30006426 fatcat:s7qu6xj5xre23jn7k4ecqlpow4

A mobile application to manage and minimise the risk of late effects caused by childhood cancer

Ann-Kristin Kock, Rafiye Kaya, Christian Müller, Björn Andersen, Thorsten Langer, Josef Ingenerf
2015 Studies in Health Technology and Informatics  
In Germany alone, over 30 000 survivors of childhood cancer are presently living.  ...  The Aftercare App supplies a wide range of information regarding the aftercare and supports a reminder functionality to attend medical visits.  ...  Evaluation Two target groups of the application are former patients cured of childhood cancer. Our target audience includes both male and female patients from the age of 15 and their relatives.  ... 
pmid:25991264 fatcat:pyoega55prcgfjhtpc2w3rmk6u

Survivorship after childhood cancer: PanCare: A European Network to promote optimal long-term care

Lars Hjorth, Riccardo Haupt, Roderick Skinner, Desiree Grabow, Julianne Byrne, Sabine Karner, Gill Levitt, Gisela Michel, Helena van der Pal, Edit Bárdi, Jörn D. Beck, Florent de Vathaire (+14 others)
2015 European Journal of Cancer  
The need for a structured long-term follow-up system after childhood cancer has been recognised for some time and strategies for implementation have been developed, first nationally and then trans-nationally  ...  Although cancer in childhood is rare increasingly effective treatments have led to a growing number of long-term survivors.  ...  The Swedish Childhood Cancer Foundation has supported travel and accommodation for PanCare meetings. The Mikaela Hansen Foundation supported the entire first PanCare meeting in Lund in March, 2008.  ... 
doi:10.1016/j.ejca.2015.04.002 pmid:25958037 pmcid:PMC5916870 fatcat:boxalrkqojgabmu37a4rqqnnc4
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