Evaluating and Providing Quality Health Information for Adolescents and Young Adults with Cancer

Overview

Journal Pediatr Blood Cancer

Specialties Hematology
Oncology
Pediatrics

Date 2019 Jul 20

PMID 31322817

Citations 15

Authors

Jacqueline Gilberto Grace

Lisl Schweers

Antoinette Anazodo

David R Freyer

Affiliations

Soon will be listed here.

Abstract

Adolescents and young adults (AYAs, 15-39 years old) are an ideal population to benefit from the ever-expanding number and variety of cancer information and health resources available via the Internet and other digital platforms. However, the ability of individual AYAs to fully utilize such resources depends on their degree of health literacy. Across the trajectory of cancer care, an important role for the oncology clinician is assisting AYAs and caregivers in accessing quality health information consistent with their level of health literacy. Working from the premise that all AYAs with cancer and their caregivers deserve to be empowered with maximal knowledge about their condition, this review provides information to assist oncology clinicians in (1) understanding the variety of contemporary online resources that are currently available, including their strengths and limitations; (2) evaluating the quality of health information; and (3) recommending specific health information resources to their AYA patients.

Citing Articles

Identifying the informational needs and sources of support of Adolescent and Young Adult (AYA) cancer survivors to inform the development of a digital platform.

Vlooswijk C, Janssen S, Sleeman S, Pluis J, van der Graaf W, van de Poll-Franse L J Cancer Surviv. 2024; .

PMID: 39424710 DOI: 10.1007/s11764-024-01679-z.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

Schilstra C, Ellis S, Cohen J, Gall A, Diaz A, Clarke K JMIR Cancer. 2024; 10:e47944.

PMID: 38526527 PMC: 11002739. DOI: 10.2196/47944.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

Ruiz S, Mintz R, Sijecic A, Eggers M, Hoffman A, Woodard T J Cancer Surviv. 2023; 18(4):1416-1425.

PMID: 37145331 DOI: 10.1007/s11764-023-01386-1.

Web-Based Digital Storytelling for Endometriosis and Pain: Qualitative Pilot Study.

Howard A, Noga H, Parmar G, Kennedy L, Aragones S, Bassra R JMIR Form Res. 2023; 7:e37549.

PMID: 36917164 PMC: 10131752. DOI: 10.2196/37549.

Websites about, not for, adolescents? A systematic analysis of online fertility preservation information for adolescent and young adult cancer patients.

Ruiz S, Mintz R, Sijecic A, Eggers M, Hoffman A, Woodard T Res Sq. 2023; .

PMID: 36824765 PMC: 9949230. DOI: 10.21203/rs.3.rs-2587513/v1.

References

Zebrack B, Block R, Hayes-Lattin B, Embry L, Aguilar C, Meeske K . Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients. Cancer. 2012; 119(1):201-14. DOI: 10.1002/cncr.27713. View

Walker M, Podbilewicz-Schuller Y . Video preparation for breast cancer treatment planning: results of a randomized clinical trial. Psychooncology. 2004; 14(5):408-20. DOI: 10.1002/pon.858. View

Longacre M . Cancer caregivers information needs and resource preferences. J Cancer Educ. 2013; 28(2):297-305. PMC: 3665756. DOI: 10.1007/s13187-013-0472-2. View

Sansom-Daly U, Lin M, Robertson E, Wakefield C, McGill B, Girgis A . Health Literacy in Adolescents and Young Adults: An Updated Review. J Adolesc Young Adult Oncol. 2016; 5(2):106-18. DOI: 10.1089/jayao.2015.0059. View

Nolke L, Mensing M, Kramer A, Hornberg C . Sociodemographic and health-(care-)related characteristics of online health information seekers: a cross-sectional German study. BMC Public Health. 2015; 15:31. PMC: 4312446. DOI: 10.1186/s12889-015-1423-0. View

Bostock S, Steptoe A . Association between low functional health literacy and mortality in older adults: longitudinal cohort study. BMJ. 2012; 344:e1602. PMC: 3307807. DOI: 10.1136/bmj.e1602. View

Andreassen H, Bujnowska-Fedak M, Chronaki C, Dumitru R, Pudule I, Santana S . European citizens' use of E-health services: a study of seven countries. BMC Public Health. 2007; 7:53. PMC: 1855923. DOI: 10.1186/1471-2458-7-53. View

Rabin C, Pinto B, Fava J . Randomized Trial of a Physical Activity and Meditation Intervention for Young Adult Cancer Survivors. J Adolesc Young Adult Oncol. 2016; 5(1):41-7. DOI: 10.1089/jayao.2015.0033. View

Parsons H, Harlan L, Schmidt S, Keegan T, Lynch C, Kent E . Who Treats Adolescents and Young Adults with Cancer? A Report from the AYA HOPE Study. J Adolesc Young Adult Oncol. 2015; 4(3):141-50. PMC: 4575540. DOI: 10.1089/jayao.2014.0041. View

10.

Kent E, Rowland J, Northouse L, Litzelman K, Chou W, Shelburne N . Caring for caregivers and patients: Research and clinical priorities for informal cancer caregiving. Cancer. 2016; 122(13):1987-95. PMC: 5597246. DOI: 10.1002/cncr.29939. View

11.

Cline R, Haynes K . Consumer health information seeking on the Internet: the state of the art. Health Educ Res. 2002; 16(6):671-92. DOI: 10.1093/her/16.6.671. View

12.

Ngoh L . Health literacy: a barrier to pharmacist-patient communication and medication adherence. J Am Pharm Assoc (2003). 2009; 49(5):e132-46. DOI: 10.1331/JAPhA.2009.07075. View

13.

Kools M, van de Wiel M, Ruiter R, Kok G . Pictures and text in instructions for medical devices: effects on recall and actual performance. Patient Educ Couns. 2006; 64(1-3):104-11. DOI: 10.1016/j.pec.2005.12.003. View

14.

Diviani N, van den Putte B, Giani S, Van Weert J . Low health literacy and evaluation of online health information: a systematic review of the literature. J Med Internet Res. 2015; 17(5):e112. PMC: 4468598. DOI: 10.2196/jmir.4018. View

15.

McCarthy M, McNeil R, Drew S, Orme L, Sawyer S . Information needs of adolescent and young adult cancer patients and their parent-carers. Support Care Cancer. 2017; 26(5):1655-1664. DOI: 10.1007/s00520-017-3984-1. View

16.

Manganello J . Health literacy and adolescents: a framework and agenda for future research. Health Educ Res. 2007; 23(5):840-7. DOI: 10.1093/her/cym069. View

17.

Beck F, Richard J, Nguyen-Thanh V, Montagni I, Parizot I, Renahy E . Use of the internet as a health information resource among French young adults: results from a nationally representative survey. J Med Internet Res. 2014; 16(5):e128. PMC: 4051740. DOI: 10.2196/jmir.2934. View

18.

Frosch D, Kaplan R, Felitti V . A randomized controlled trial comparing internet and video to facilitate patient education for men considering the prostate specific antigen test. J Gen Intern Med. 2003; 18(10):781-7. PMC: 1494924. DOI: 10.1046/j.1525-1497.2003.20911.x. View

19.

Liddell C, Rae G, Brown T, Johnston D, Coates V, Mallett J . Giving patients an audiotape of their GP consultation: a randomised controlled trial. Br J Gen Pract. 2004; 54(506):667-72. PMC: 1326067. View

20.

Colledge A, Car J, Donnelly A, Majeed A . Health information for patients: time to look beyond patient information leaflets. J R Soc Med. 2008; 101(9):447-53. PMC: 2587380. DOI: 10.1258/jrsm.2008.080149. View