JMIR Publications

ABSTRACT

Background:

On a growing scale, Patient Reported Outcomes (PROs), including Ecological Momentary Assessments (EMA) are acquired from patients via repeated self-reports of their perceived momentary physical and emotional states before and after complex medical procedures such as organ transplants. The PROs are enabling to measure health outcomes and quality-of-care. However, certain observable states or behaviors (e.g., moods such as fatigue and hope, or medication adherence), as well as behaviors suggestive health decline (e.g., depression, cognitive decline), may not be easily and reliably measured via self-reports alone, especially when patients are awaiting to receive, or recovering from an organ transplant.

Objective:

The peer-ceived momentary assessment (PeerMA) method implies the involvement of support persons or peers (e.g., family members, friends) to report their perception of the individual’s subjective physical and emotional states and has been validated in healthy populations. This paper examines the potential value of the PeerMA method to assess and learn more about disease progression and recovery pathways of patients undergoing a liver transplant. In this work, the PeerMA method is operationalized via patient’s informal caregivers in conjunction with the patient’s-based EMA, and wearable-based physical activity datasets from the patients. We report the feasibility results, human factors and methodological aspects influencing the acceptance and reliability of the PeerMA method in a small sample of patients.

Methods:

We conducted a longitudinal study of six months, collecting EMA/self-reports from eight patients (pre- and post- liver transplant) about their perceived levels of pain, fatigue, hope, depression, and sleep quality, in addition to collecting PeerMA-based reports of the same aspects from seven of their caregivers referred to as ‘support persons’. Additionally, we collected physical activity records from the patients using a wearable activity monitor.

Results:

We found empirical evidence about the feasibility of PeerMA as a method and demonstrated that it provides unique information streams that are not available in EMA-only studies. We showed examples where support person assessments (i.e., PeerMA) as well as physically activity data can be used to inform health professionals about the actual state of a patient regarding important outcomes such as hope, sleep quality, fatigue, pain, and depression. We identified and discussed four human factors that influence the acceptance of the PeerMA method, and seven methodological aspects that affect the applicability of the method. Although the PeerMA method can be operationalized in several ways, in this article, we implemented it using smartphone application which occurred to be easy to utilize by both patients and support persons.

Conclusions:

It is possible to leverage the data acquired via the PeerMA method as well as wearable activity monitor outcomes as complementary to EMA. Such data helps to understand the disease recovery pathways of high-risk populations such as patients recovering from an organ transplant. Clinical Trial: “Studying the Subjective and Objective Momentary as well as Longitudinal Perception of Quality of Life in Different Contexts of Daily Life” Protocol N. 47833 approved by the Institutional Review Board, Stanford University, United States. Protocol Director: W Concepcion (22.01.2019-31.12.2099).