Care providers’ and patients’ attitudes toward using electronic-patient reported outcomes to support patients with traumatic brain injury: a qualitative study (PRiORiTy)

ABSTRACT

Objectives

To (a) identify residual symptoms and deficits resulting from a traumatic brain injury (TBI) and impact on patients’ and their families’ quality of life; (b) explore views and experience of care providers, researchers, patients, and carers of using PROMs; and (c) explore their attitudes toward reporting symptoms and impacts on an electronic platform. Methods: Qualitative semi-structured interviews with people with TBI and their carers; health-care professionals, researchers, and third sector staff members working with people with TBI. Results: Symptoms and long-term impacts of TBI included cognitive problems, difficulties functioning, anxiety, and depression. PROMs were seen as improving knowledge of residual symptoms and their impact post-TBI but not always accurately reflecting patients’ residual problems. Challenges to completing PROMs were cognitive impairment and lack of insight into condition. Perceived advantages of an electronic platform included easy data collection; flexibility; improving workflow; and the ability to send/ receive feedback and reminders easily. Suggested features of an electronic platform included simple layout, lay language, short questions, few items on the screen, and capability to send/receive feedback and additional information. Conclusion: There is a demand for reporting symptoms and their impact electronically, providing the layout is kept simple and feedback from clinicians is provided.

KEYWORDS:

• PROMs
• electronic PROMs
• qualitative research
• traumatic brain injury
• ePROMs

Contributors

The study concept and design were conceived by GT, AS, MC, DK, LJ, and TB. AR, AS, and CM consented participants and undertook the interviews with input from GT, MC, DK, and LJ. The protocol was written by GT, AR, and CM prepared the first draft of the manuscript. GT, AS, CM, DK, AB, LJ, and MC all provided edits and critiqued the manuscript for intellectual content.

Competing interests

MC has received personal fees from PCORI, Astellas, Takeda, Glaukos, and Merck outside the submitted work.

CM, GT, AS, AR, LJ, AB, and DK have no competing interests.

Additional information

Funding

This research was funded by The National Institute for Health Research (NIHR) Surgical Reconstruction and Microbiology Research Centre (SRMRC). GT is funded by the NIHR Postdoctoral Fellowship program (PDF-2017-10-047) and NIHR SRMRC. DK reports grants from Macmillan Cancer Support, Innovate UK, the National Institute for Health Research (NIHR) (PDF2016-09-009), NIHR Birmingham Biomedical Research Centre and NIHR SRMRC at the University of Birmingham and University Hospitals Birmingham NHS Foundation Trust and personal fees from Merck outside the submitted work. AS receives funding from the British Heart Foundation, Snow Foundation, Eye Hope Foundation, and Association Du Syndrome de Wolfram. MC receives funding from the NIHR Birmingham Biomedical Research Centre, NIHR SRMRC at the University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham, Health Data Research UK, Innovate UK and Macmillan Cancer Support. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health.