Literature DB >> 23007883

Evaluation of a patient information website for childhood cancer survivors.

Sebastiaan L Knijnenburg1, Leontien C Kremer, A Birgitta Versluys, Katja I Braam, Minke S Mud, Heleen J van der Pal, Huib N Caron, Monique W Jaspers.   

Abstract

PURPOSE: Childhood cancer survivors (CCS) are in need of specialized information about late effects of treatment. In the current study, we assessed the perceived usability and satisfaction with the content of a national website with information on late effects and analyzed possible determinants related to website usability and content satisfaction.
METHODS: CCS and their parents were contacted through our local follow-up program and via online media to complete an online questionnaire regarding their baseline characteristics, medical decision style, and the usability and content of the website. Usability was evaluated using the System Usability Scale (SUS), a validated questionnaire resulting in a score from 0 to 100. For the content rating, we constructed a six-item scale resulting in a score from 1 to 5 (Cronbach's α, 0.83). Comments were analyzed qualitatively.
RESULTS: Fifty-five survivors and forty-three parents of survivors completed the questionnaire. Median age of respondents was 41 years (range, 17-58). Respondents rated the website's usability with a mean SUS score of 72.5 (95 % CI, 69.2-74.9). The mean content rating was 3.7 (95 % CI, 3.5-3.8). No determinants were significantly related to the perceived usability or content satisfaction in multivariate analyses. Qualitative analysis revealed respondents' preference for more detailed and even scientific information on late effects.
CONCLUSION: Respondents were satisfied with the usability and the contents of a website that targeted at their information needs. As knowledge about late effects is still limited among survivors, a website can be a valuable resource to improve their knowledge, promote healthy behavior, and in the end, improve their quality of life.

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Year:  2012        PMID: 23007883     DOI: 10.1007/s00520-012-1604-7

Source DB:  PubMed          Journal:  Support Care Cancer        ISSN: 0941-4355            Impact factor:   3.603


  31 in total

1.  Medical assessment of adverse health outcomes in long-term survivors of childhood cancer.

Authors:  Maud M Geenen; Mathilde C Cardous-Ubbink; Leontien C M Kremer; Cor van den Bos; Helena J H van der Pal; Richard C Heinen; Monique W M Jaspers; Caro C E Koning; Foppe Oldenburger; Nelia E Langeveld; Augustinus A M Hart; Piet J M Bakker; Huib N Caron; Flora E van Leeuwen
Journal:  JAMA       Date:  2007-06-27       Impact factor: 56.272

2.  A comparison of usability methods for testing interactive health technologies: methodological aspects and empirical evidence.

Authors:  Monique W M Jaspers
Journal:  Int J Med Inform       Date:  2008-11-29       Impact factor: 4.046

3.  A conceptual framework for understanding and improving adolescents' exposure to Internet-delivered interventions.

Authors:  Rik Crutzen; Jascha de Nooijer; Wendy Brouwer; Anke Oenema; Johannes Brug; Nanne K de Vries
Journal:  Health Promot Int       Date:  2009-06-10       Impact factor: 2.483

4.  Perspectives on quality and content of information on the internet for adolescents with cancer.

Authors:  Jennifer N Stinson; Meghan White; Vicky Breakey; Amy Lee Chong; Isabella Mak; Kazuo Koekebakker Low; Anja Koekebakker Low
Journal:  Pediatr Blood Cancer       Date:  2011-02-15       Impact factor: 3.167

5.  Elder women's decision-making in breast cancer care: An Israeli study.

Authors:  Ilana Kadmon; Penny Pierce; Cathy L Antonakos
Journal:  Eur J Oncol Nurs       Date:  2011-07-20       Impact factor: 2.398

6.  Decision support for patients with early-stage breast cancer: effects of an interactive breast cancer CDROM on treatment decision, satisfaction, and quality of life.

Authors:  S Molenaar; M A Sprangers; E J Rutgers; E J Luiten; J Mulder; P M Bossuyt; J J van Everdingen; P Oosterveld; H C de Haes
Journal:  J Clin Oncol       Date:  2001-03-15       Impact factor: 44.544

7.  Adult survivors of childhood malignant lymphoma are not aware of their risk of late effects.

Authors:  Siri L Hess; Inga M Jóhannsdóttir; Hanne Hamre; Cecilie E Kiserud; Jon H Loge; Sophie D Fosså
Journal:  Acta Oncol       Date:  2011-01-24       Impact factor: 4.089

8.  Survival of European children and young adults with cancer diagnosed 1995-2002.

Authors:  Gemma Gatta; Giulia Zigon; Riccardo Capocaccia; Jan Willem Coebergh; Emmanuel Desandes; Peter Kaatsch; Guido Pastore; Rafael Peris-Bonet; Charles A Stiller
Journal:  Eur J Cancer       Date:  2009-02-21       Impact factor: 9.162

9.  Health information needs of childhood cancer survivors and their family.

Authors:  Sebastiaan L Knijnenburg; Leontien C Kremer; Cor van den Bos; Katja I Braam; Monique W M Jaspers
Journal:  Pediatr Blood Cancer       Date:  2010-01       Impact factor: 3.167

10.  An exploration of factors related to dissemination of and exposure to internet-delivered behavior change interventions aimed at adults: a Delphi study approach.

Authors:  Wendy Brouwer; Anke Oenema; Rik Crutzen; Jascha de Nooijer; Nanne K de Vries; Johannes Brug
Journal:  J Med Internet Res       Date:  2008-04-16       Impact factor: 5.428

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  9 in total

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

Authors:  L W Peute; S L Knijnenburg; L C Kremer; M W M Jaspers
Journal:  Appl Clin Inform       Date:  2015-06-12       Impact factor: 2.342

2.  Nutritional Online Information for Cancer Patients: a Randomized Trial of an Internet Communication Plus Social Media Intervention.

Authors:  Patrizia Gnagnarella; Alessandro Maria Misotti; Luigi Santoro; Demosthenes Akoumianakis; Laura Del Campo; Francesco De Lorenzo; Claudio Lombardo; Giannis Milolidakis; Richard Sullivan; John Gordon McVie
Journal:  J Cancer Educ       Date:  2016-09       Impact factor: 2.037

3.  Evaluation of a pharmacogenetic educational toolkit for community pharmacists.

Authors:  Susanne B Haga; Rachel Mills; Jivan Moaddeb
Journal:  Pharmacogenomics       Date:  2016-08-17       Impact factor: 2.533

4.  Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study.

Authors:  Anneli V Mellblom; Live Korsvold; Arnstein Finset; Jon Loge; Ellen Ruud; Hanne C Lie
Journal:  J Adolesc Young Adult Oncol       Date:  2015-12       Impact factor: 2.223

5.  Health media use among childhood and young adult cancer survivors who smoke.

Authors:  Rebekah H Nagler; Elaine Puleo; Kim Sprunck-Harrild; K Viswanath; Karen M Emmons
Journal:  Support Care Cancer       Date:  2014-04-13       Impact factor: 3.603

6.  The Prevalence and Characteristics of Emergency Medicine Patient Use of New Media.

Authors:  Lori Ann Post; Federico E Vaca; Brian J Biroscak; James Dziura; Cynthia Brandt; Steven L Bernstein; Richard Taylor; Liudvikas Jagminas; Gail D'Onofrio
Journal:  JMIR Mhealth Uhealth       Date:  2015-07-08       Impact factor: 4.773

Review 7.  Media Use and the Cancer Communication Strategies of Cancer Survivors.

Authors:  Heesoo Yoon; Minsung Sohn; Minsoo Jung
Journal:  J Cancer Prev       Date:  2016-09-30

8.  Development and Initial Assessment of a Patient Education Video about Pharmacogenetics.

Authors:  Rachel Mills; Megan Ensinger; Nancy Callanan; Susanne B Haga
Journal:  J Pers Med       Date:  2017-05-25

9.  Late effects awareness website for pediatric survivors of acute lymphocytic leukemia.

Authors:  Hillary Klonoff-Cohen; Ana Navarro; Elizabeth A Klonoff
Journal:  PLoS One       Date:  2018-02-16       Impact factor: 3.240

  9 in total

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