Demographic and cancer-related differences between self-seeking patients and supported patients: Analysis of cancer information-service data

Psychooncology. 2019 Apr;28(4):759-766. doi: 10.1002/pon.5016. Epub 2019 Feb 12.

Abstract

Objective: Surrogate information seeking is quite common, and several studies have presented data on caregivers, family members, and friends who seek health information on the Internet or from a cancer-information service (CIS) on behalf of cancer patients. However, these studies provide little information about the patients who are supported by surrogate seekers. Therefore, this study analyzed demographic and cancer-related differences, including diverse informational needs, between self-seeking patients and patients who benefited from surrogate seekers (ie, caregivers, family, or friends) requesting information on their behalf.

Methods: We conducted a retrospective audit of phone and e-mail inquiries to a German CIS between January and December 2016 from self-seeking patients (n = 13 723) and surrogate information seekers, as well as the corresponding supported patients (n = 6696).

Results: Supported patients were more likely to be males (P < 0.001), older than self-seeking patients (P < 0.001), and older than the corresponding surrogate seekers (P < 0.001). They were also more likely to be in the diagnostic or palliative stage (P < 0.001) and were less likely to suffer from breast cancer or prostate cancer (P < 0.001) than self-seeking patients. There were significant differences in the CIS requests of self-seekers and surrogate seekers.

Conclusions: The results point to different support needs of self-seekers and surrogate seekers. Thus, surrogate seekers and their corresponding supported patients should be seen as a separate target group to self-seeking patients, with the former requiring informational and emotional support on diverging topics and at different disease stages.

Keywords: cancer-care continuum; cancer-information seeking; cancer-information service; oncology; social support; surrogate-information seeking.

MeSH terms

  • Adult
  • Age Factors
  • Caregivers / psychology
  • Caregivers / statistics & numerical data*
  • Consumer Health Information / statistics & numerical data*
  • Family
  • Female
  • Humans
  • Information Seeking Behavior*
  • Internet
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Retrospective Studies
  • Sex Factors
  • Social Support*
  • Socioeconomic Factors