An electronic patient-reported outcome created based on my needs is worth using: an explorative qualitative study investigating young people's opinions for a health assessment tool

Petra V Lostelius; Magdalena Mattebo; Anne Söderlund; Åsa Revenäs; Eva Thors Adolfsson

doi:10.1186/s41687-022-00436-z

An electronic patient-reported outcome created based on my needs is worth using: an explorative qualitative study investigating young people's opinions for a health assessment tool

J Patient Rep Outcomes. 2022 Mar 28;6(1):29. doi: 10.1186/s41687-022-00436-z.

Authors

Petra V Lostelius^{1

2

3}, Magdalena Mattebo⁴, Anne Söderlund⁴, Åsa Revenäs^{4

5

6}, Eva Thors Adolfsson⁵

Affiliations

¹ Clinic for Pain Rehabilitation Västmanland, Region Västmanland, Västerås, Sweden. petra.lostelius@regionvastmanland.se.
² School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden. petra.lostelius@regionvastmanland.se.
³ Centre for Clinical Research Region, Hospital of Västmanland Västerås, Region Västmanland - Uppsala University, 721 89, Västerås, Sweden. petra.lostelius@regionvastmanland.se.
⁴ School of Health, Care and Social Welfare, Mälardalen University, Västerås, Sweden.
⁵ Centre for Clinical Research Region, Hospital of Västmanland Västerås, Region Västmanland - Uppsala University, 721 89, Västerås, Sweden.
⁶ Orthopedic Clinic, Region Västmanland, Västerås, Sweden.

Abstract

Background: Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient's perspective. Sweden offers free healthcare to young people aged 12-25 years at 275 youth health clinics (YHCs), whose goals are to strengthen young people and promote sexual, physical, and mental health. YHCs need effective ways to identify the overall picture of young people's health and health-related problems. To our knowledge, there is no ePRO for YHCs that provides an overview of young people's health from several health perspectives. The aim of this study was to explore young people's view on content and design of an ePRO to provide an overview of their health and health related problems when visiting a YHC, and their opinion on what healthcare needs to consider when using the ePRO. This was an explorative qualitative study. The participants were included from five YHCs, in different socioeconomic areas in central Sweden. Fifteen participants were included: 10 girls, three boys, and two non-binary participants with an age range of 16-22 years. Data were collected using a semi-structured interview guide and individual interviews, and inductive content analysis was performed.

Results: One main theme, "ePRO created based on my needs is worth using" and two sub-themes, "Appealing content and design" and "Trusting healthcare", emerged. The participants wanted that an ePRO should include overall questions about mental-, physical-, and sexual health and social support. Participants also believed the ePRO must disclose the risks of self-harm or suicide. The participants noted the importance of emotional and digital security when using the ePRO and having a confidential conversation with a healthcare provider. To share health information means to trust to gain health.

Conclusions: The study participants' views on content and design can form the basis for designing an ePRO for young people. Their thoughts on safety and treatment in healthcare can be considered in the development process. This study is the starting point for developing an ePRO for young people at YHCs.

Keywords: Electronic patient-reported outcome; Medical informatics; Qualitative research; Young people; Youth health clinic.

Grants and funding

LTV-931431/Region Västmanland