Patient-reported outcome measures in the interaction between patient and clinician – a multi-perspective qualitative study

Abstract

Background: This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients' PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient's PRO is termed a "PRO consultation." In this multi-perspective qualitative study, we explored the influence of patients' self-reported data on patientclinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients. Results: We found that application and deliberate use of patients' PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients' experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures' potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement. Conclusions: Applying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients' introduction to PRO-based followup clarifies expectations.

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease

“…Participants in this study appreciated this functionality; it was believed to be one of the main benefits of the digital system and of great importance to the patients. The increased focus on psychological aspects of the disease has also been found in other studies of PROs [40][41][42]. In addition, the digital PRO's focus on extraintestinal symptoms was found to lead to a small increase in health literacy among some of the participants, which could support self-management [43].…”

Cancer follow-up supported by patient-reported outcomes in patients undergoing intended curative complex surgery for advanced cancer

“…The health care professional encouraged me to ask questions or talk about concerns) a large proportion of + ePRO consultations were assessed as 'much' og 'very much' involving. The answers to these questions (I-III) may indicate that the use of ePRO provide a wider scope of dialogue and encourage patients to ask questions and share their experiences and concerns during follow-up consultations, which is also reported from other studies [21,36]. However, it must be interpreted with caution due to multiple responses from each patient.…”

“…In general, the clinician's attitude towards PRO's in a consultation (i.e. main component in current intervention) has been described as ambivalent [21,46,47], and highly depend on the clinicians' day-to-day management of the system [48]. The lack of action from the health professionals to a problem reported by the patient in the PRO, induces unfilled patient expectations, and potentiates implementation barriers [21].…”

“…It has been demonstrated that an increase in patients' activation is associated with a positive change in general health and lower health care costs [19,20]. PA can be influenced by self-management strategies, and the use of patientreported outcomes (PRO) in the consultations has been suggested as a tool to facilitate patient involvement and support PA [21,22].…”

Home Parenteral Nutrition Patient‐Reported Outcome Questionnaire: Sensitive to Quality of Life Differences Among Chronic and Prolonged Acute Intestinal Failure Patients

“…To make a difference in dialogue, it is important that the clinician values the PRO and considers having patients' self-assessment of their illness as important knowledge. 30 Training in patientcentered communication may also improve the effectiveness of PROs by facilitating the dialogue and discussion. 31 Future research could incorporate improvement methodology by embedding the assessment of QOL in routine clinical practice and evaluating patient satisfaction.…”