nach oben

Erschienen in:

01.06.2024 | Research

Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers

verfasst von: Carma L. Bylund, Greenberry Taylor, Taylor S. Vasquez, Jordan Alpert, Skyler B. Johnson, Tien Le, Samantha R. Paige, Julia Close, Merry-Jennifer Markham

Erschienen in: Supportive Care in Cancer | Ausgabe 6/2024

Einloggen, um Zugang zu erhalten

Abstract

Objectives

To describe patients’ and surrogate information seekers’ experiences talking to clinicians about online cancer information. To assess the impact of clinicians telling patients or surrogate seekers not to search for information online.

Design

Cross-sectional survey.

Sample

A total of 282 participants, including 185 individuals with cancer and 97 surrogate seekers.

Methods

Individuals were recruited through a broad consent registry and completed a 20-min survey.

Findings

Cancer patients and surrogate seekers did not differ significantly in their experiences talking with clinicians about online cancer information. Nearly all patients and surrogate seekers who were told by a clinician not to go online for cancer information did so anyway.

Implications

Interventions for improving cancer information seeking and communication with clinicians should target both patients and surrogate seekers. Clinicians should be educated about effective ways to communicate with patients and surrogate seekers about online cancer information.

Finney Rutten LJ, Blake KD, Greenberg-Worisek AJ, Allen SV, Moser RP, Hesse BW (2019) Online health information seeking among US adults: measuring progress toward a Healthy People 2020 objective. Public Health Rep Nov/Dec 134(6):617–625. https://doi.org/10.1177/0033354919874074CrossRef

Dolce MC (2011) The internet as a source of health information: experiences of cancer survivors and caregivers with healthcare providers. Oncol Nurs Forum 38(3):353–359. https://doi.org/10.1188/11.Onf.353-359CrossRefPubMed

Anderson JG (2004) Consumers of e-health: patterns of use and barriers. Soc Sci Comput Rev 22(2):242–248. https://doi.org/10.1177/0894439303262671CrossRef

Ochoa-Arnedo C, Flix-Valle A, Casellas-Grau A et al (2020) An exploratory study in breast cancer of factors involved in the use and communication with health professionals of internet information. Support Care in Cancer 28(10):4989–4996. https://doi.org/10.1007/s00520-020-05335-xCrossRef

Castleton K, Fong T, Wang-Gillam A et al (2011) A survey of internet utilization among patients with cancer. Support Care in Cancer 19(8):1183–1190. https://doi.org/10.1007/s00520-010-0935-5CrossRef

Bylund CL, Gueguen JA, D’Agostino TA, Imes RS, Sonet E (2009) Cancer patients’ decision about discussing internet information with their doctors. Psychooncology 18:1139–1146CrossRefPubMed

D’Agostino TA, Ostroff JS, Heerdt A, Dickler M, Li Y, Bylund CL (2012) Toward a greater understanding of breast cancer patients’ decisions to discuss cancer-related internet information with their doctors: an exploratory study. Patient Educ Couns 89(1):109–115. https://doi.org/10.1016/j.pec.2012.05.008CrossRefPubMedPubMedCentral

Bylund CL, Gueguen JA, D’Agostino TA, Li Y, Sonet E (2010) Doctor-patient communication about cancer-related internet information. J Psychosoc Oncol 28(127–142):127–142CrossRefPubMedPubMedCentral

Shen MJ, Dyson RC, D’Agostino TA et al (2015) Cancer-related internet information communication between oncologists and patients with breast cancer: a qualitative study. Psychooncology 24(11):1439–1447. https://doi.org/10.1002/pon.3752CrossRefPubMedPubMedCentral

10.

Glajchen M (2004) The emerging role and needs of family caregivers in cancer care. J Support Oncol Mar-Apr 2(2):145–155

11.

Sadasivam RS, Kinney RL, Lemon SC, Shimada SL, Allison JJ, Houston TK (2013) Internet health information seeking is a team sport: analysis of the Pew Internet Survey. Int J Med Informatics 82(3):193–200. https://doi.org/10.1016/j.ijmedinf.2012.09.008CrossRef

12.

Park E, Kim H, Steinhoff A (2016) Health-related internet use by informal caregivers of children and adolescents: an integrative literature review. J Med Internet Res 18(3):e57. https://doi.org/10.2196/jmir.4124CrossRefPubMedPubMedCentral

13.

Cutrona SL, Mazor KM, Vieux SN, Luger TM, Volkman JE, Finney Rutten LJ (2015) Health information-seeking on behalf of others: characteristics of “surrogate seekers.” J Cancer Educ 30(1):12–19. https://doi.org/10.1007/s13187-014-0701-3CrossRefPubMedPubMedCentral

14.

Litzelman K (2019) Caregiver well-being and the quality of cancer care. Semin Oncol Nurs 35(4):348–353. https://doi.org/10.1016/j.soncn.2019.06.006CrossRefPubMedPubMedCentral

15.

Otto AK, Reblin M, Harper FWK et al (2021) Impact of patients’ companions on clinical encounters between Black patients and their non-Black oncologists. JCO Oncology Practice 17(5):e676–e685. https://doi.org/10.1200/op.20.00820CrossRefPubMedPubMedCentral

16.

Jansen J, van Weert JC, Wijngaards-de Meij L, van Dulmen S, Heeren TJ, Bensing JM (2010) The role of companions in aiding older cancer patients to recall medical information. Psychooncology 19(2):170–179. https://doi.org/10.1002/pon.1537CrossRefPubMed

17.

Vasquez TS, Bylund CL, Alpert J et al (2022) Comparing transactional eHealth literacy of individuals with cancer and surrogate information seekers: mixed methods study. JMIR Form Res 6(9):e36714. https://doi.org/10.2196/36714

18.

Tan SS, Goonawardene N (2017) Internet health information seeking and the patient-physician relationship: a systematic review. J Med Internet Res 19(1):e9. https://doi.org/10.2196/jmir.5729CrossRefPubMedPubMedCentral

19.

Johnson TP. Snowball sampling: introduction. In: Balakrishnan N, Colton T, Everitt B, Piegorsch W, Ruggeri F, Teugels J.L (eds) Wiley StatsRef: Statistics Reference Online. https://doi.org/10.1002/9781118445112.stat05720

20.

Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG (2009) Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform 42(2):377–381. https://doi.org/10.1016/j.jbi.2008.08.010CrossRefPubMed

21.

Bylund CL, Gueguen J, Sabee C, Imes R, Li Y, Sanford A (2007) Provider-patient dialogue about internet information: an exploration of strategies to improve the provider-patient relationship. Patient Educ Couns 66:346–352CrossRefPubMed

22.

Fisher CL, Campbell-Salome G, Applebaum AJ et al (2022) Evaluation of the Healthy Communication Practice intervention for caregivers of parents with a blood cancer. presented at: International Psycho-Oncology Society World Congress, Toronto, CA.

23.

Lange L, Peikert ML, Bleich C, Schulz H (2019) The extent to which cancer patients trust in cancer-related online information: a systematic review. PeerJ 7:e7634. https://doi.org/10.7717/peerj.7634CrossRefPubMedPubMedCentral

24.

Eggly S, Penner LA, Hagiwara N et al (2013) Patient, companion, and oncologist agreement regarding information discussed during triadic oncology clinical interactions. Psychooncology 22(3):637–645. https://doi.org/10.1002/pon.3045CrossRefPubMed

25.

Moss KO, Douglas SL, Lipson AR et al (2021) Understanding of health-related decision-making terminology among cancer caregivers. West J Nurs Res 43(7):649–659. https://doi.org/10.1177/0193945920965238CrossRefPubMed

26.

Paige SR, Stellefson M, Krieger JL, Anderson-Lewis C, Cheong J, Stopka C (2018) Proposing a transactional model of eHealth literacy: concept analysis. J Medical Internet Res 20(10):e10175. https://doi.org/10.2196/10175CrossRef

27.

Imes R, Bylund CL, Routsong T, Sabee C, Sanford A (2008) Patients’ reasons for refraining from discussing internet health information with their health care providers. Health Commun 23:538–547CrossRefPubMed

28.

Johnson SB, Parsons M, Dorff T et al (2021) Cancer misinformation and harmful information on Facebook and other social media: a brief report. J Natl Cancer Inst https://doi.org/10.1093/jnci/djab141

29.

Scherer LD, McPhetres J, Pennycook G et al (2021) Who is susceptible to online health misinformation? A test of four psychosocial hypotheses. Health Psychol 40(4):274–284. https://doi.org/10.1037/hea0000978CrossRefPubMed

Titel: Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers
verfasst von: Carma L. Bylund
Greenberry Taylor
Taylor S. Vasquez
Jordan Alpert
Skyler B. Johnson
Tien Le
Samantha R. Paige
Julia Close
Merry-Jennifer Markham
Publikationsdatum: 01.06.2024
Verlag: Springer Berlin Heidelberg
Erschienen in: Supportive Care in Cancer / Ausgabe 6/2024
Print ISSN: 0941-4355
Elektronische ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-024-08578-0

Update Onkologie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.

Newsletter bestellen

Live-Webinar "Urologie und Sexualmedizin in der Praxis"

Springer Medizin

Talking with clinicians about online cancer information: a survey of cancer patients and surrogate information seekers