“I Want to Spend My Time Living”—Experiences With a Digital Outpatient Service With a Mobile App for Tailored Care Among Adults With Long-Term Health Service Needs: Qualitative Study Using Thematic Analysis

TL;DR

A digital outpatient service with a mobile app helped patients with long-term health needs feel more in control of their care and supported by healthcare workers.

Contribution

This study provides new qualitative insights into how patients experience digital outpatient care and its impact on self-management and health literacy.

Findings

Patients valued the flexibility and autonomy offered by the digital outpatient service.

Digital tools enhanced patients' sense of safety through easy access to healthcare workers.

Active patient engagement was crucial for benefiting from the digital solution.

Abstract

Digital health services are increasingly used in hospital-based outpatient care, offering remote monitoring, patient-reported outcomes, information sharing, and asynchronous communication. While expected to improve self-management, timeliness, and efficiency, the success of digital health interventions relies on patients’ health literacy and digital health literacy. While some research has addressed potential associations between digital health interventions and patients’ health outcomes, research on patients’ experiences remains limited.

The aim of this study was to explore and gain in-depth knowledge about the experiences of patients with chronic or long-term conditions enrolled in a 6-month digital outpatient care intervention for tailored care and health literacy.

We conducted an exploratory qualitative interview study with 17 strategically recruited adult patients with cancer, interstitial lung disease, epilepsy, or complicated pain who used a digital outpatient service for 6 months. Individual telephone interviews were conducted using a semistructured guide, transcribed verbatim, and analyzed with thematic analysis to generate codes and themes. Participants had a median age of 62 years (minimum-maximum 36-83 years), with 8 females and 9 males.

The thematic analysis led to 1 main theme “Digital outpatient care as a flexible service supporting patients’ self-management,” informed by 3 subthemes “The ongoing nature of managing a chronic condition and how the digital service meet the patients’ desire for autonomy in their care,” “Digital tools flexibly address the patients’ unique needs, but reliability depends on patient interaction,” and “Digital services enhance the patients’ sense of safety through easy access to a relation with competent healthcare workers.” The themes highlight patients’ appreciation for greater flexibility in their care and their desire to self-manage with the support of easily accessible health care workers, ultimately supporting their health literacy. Patients recognized the importance of actively engaging with the digital solution to fully benefit from its opportunities and emphasized the critical role of health care workers in fostering their sense of security.

Digital outpatient care was experienced as flexible and supportive for patients with long-term conditions. The increased possibility of interacting with health care workers was welcomed by the patients, and the combination of flexibility, self-monitoring, and addressing concerns regarding their self-management may increase the patients experience of autonomy. As health literacy likely plays a role in patients’ ability to effectively engage with digital tools and self-manage their conditions, future research should explore how varying levels of health literacy influence these outcomes. In addition, research should address whether such digital outpatient clinics are positive for a wider range of patients, associated health outcomes, and any positive effects on a health system level.

ClinicalTrials.gov NCT05068869; https://clinicaltrials.gov/ct2/show/NCT05068869