An interactive portal to empower cancer survivors: a qualitative study on user expectations

Wilma Kuijpers, Wim G. Groen, Romy Loos, Hester S.A. Oldenburg, Michel W.J.M. Wouters, Neil K. Aaronson, Willem H. van Harten (Corresponding Author)

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Abstract

Purpose: Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors’ and health professionals’ expectations of possible features of an interactive portal.

Methods: We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis.

Results: Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors’ health status. We recommend to minimally include these features in an interactive portal for cancer survivors.

Conclusions: This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process
Original languageEnglish
Pages (from-to)2535-2542
JournalSupportive care in cancer
Volume23
Issue number9
DOIs
Publication statusPublished - 27 Jan 2015

Fingerprint

Survivors
Neoplasms
Electronic Health Records
Health
Focus Groups
Appointments and Schedules
Survival Rate
Patient Participation
Self Care
Health Status
Motivation
Lung Neoplasms
Referral and Consultation
Rehabilitation
Communication
Breast Neoplasms

Keywords

  • UT-Hybrid-D
  • Oncology
  • Cancer survivors
  • Health professionals
  • Focus group
  • Interactive portal

Cite this

Kuijpers, W., Groen, W. G., Loos, R., Oldenburg, H. S. A., Wouters, M. W. J. M., Aaronson, N. K., & van Harten, W. H. (2015). An interactive portal to empower cancer survivors: a qualitative study on user expectations. Supportive care in cancer, 23(9), 2535-2542. https://doi.org/10.1007/s00520-015-2605-0
Kuijpers, Wilma ; Groen, Wim G. ; Loos, Romy ; Oldenburg, Hester S.A. ; Wouters, Michel W.J.M. ; Aaronson, Neil K. ; van Harten, Willem H. / An interactive portal to empower cancer survivors : a qualitative study on user expectations. In: Supportive care in cancer. 2015 ; Vol. 23, No. 9. pp. 2535-2542.
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abstract = "Purpose: Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors’ and health professionals’ expectations of possible features of an interactive portal.Methods: We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis.Results: Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors’ health status. We recommend to minimally include these features in an interactive portal for cancer survivors.Conclusions: This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process",
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Kuijpers, W, Groen, WG, Loos, R, Oldenburg, HSA, Wouters, MWJM, Aaronson, NK & van Harten, WH 2015, 'An interactive portal to empower cancer survivors: a qualitative study on user expectations', Supportive care in cancer, vol. 23, no. 9, pp. 2535-2542. https://doi.org/10.1007/s00520-015-2605-0

An interactive portal to empower cancer survivors : a qualitative study on user expectations. / Kuijpers, Wilma; Groen, Wim G.; Loos, Romy; Oldenburg, Hester S.A.; Wouters, Michel W.J.M.; Aaronson, Neil K.; van Harten, Willem H. (Corresponding Author).

In: Supportive care in cancer, Vol. 23, No. 9, 27.01.2015, p. 2535-2542.

Research output: Contribution to journalArticleAcademicpeer-review

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AU - Groen, Wim G.

AU - Loos, Romy

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AU - Wouters, Michel W.J.M.

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N2 - Purpose: Portals are increasingly used to improve patient empowerment, but are still uncommon in oncology. In this study, we explored cancer survivors’ and health professionals’ expectations of possible features of an interactive portal.Methods: We conducted three focus groups with breast cancer survivors (n = 21), two with lung cancer survivors (n = 14), and four with health professionals (n = 31). Drafts of possible features of an interactive portal were presented as static screenshots: survivorship care plan (SCP), access to electronic medical record (EMR), appointments, e-consultation, online patient community, patient reported outcomes (PROs) plus feedback, telemonitoring service, online rehabilitation program, and online psychosocial self-management program. This presentation was followed by an open discussion. Focus groups were audiotaped, transcribed verbatim, and data were analyzed using content analysis.Results: Important themes included fulfillment of information needs, communication, motivation, quality of feedback, and supervision. Cancer survivors were primarily interested in features that could fulfill their information needs: SCP, access to their EMR, and an overview of appointments. Health professionals considered PROs and telemonitoring as most useful features, as these provide relevant information about survivors’ health status. We recommend to minimally include these features in an interactive portal for cancer survivors.Conclusions: This is the first study that evaluated the expectations of cancer survivors and health professionals concerning an interactive portal. Both groups were positive about the introduction of such a portal, although their preferences for the various features differed. These findings reflect their unique perspective and emphasize the importance of involving multiple stakeholders in the actual design process

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KW - UT-Hybrid-D

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KW - Cancer survivors

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Kuijpers W, Groen WG, Loos R, Oldenburg HSA, Wouters MWJM, Aaronson NK et al. An interactive portal to empower cancer survivors: a qualitative study on user expectations. Supportive care in cancer. 2015 Jan 27;23(9):2535-2542. https://doi.org/10.1007/s00520-015-2605-0