The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force.

AIMS: Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. METHODS: We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. RESULTS: The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. DISCUSSION: Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. SYSTEMATIC REVIEW REGISTRATION: PROSPERO No. CRD42018103179.

Complementing Human Behavior Assessment by Leveraging Personal Ubiquitous Devices and Social Links: An Evaluation of the Peer-Ceived Momentary Assessment Method.

BACKGROUND: Ecological momentary assessment (EMA) enables individuals to self-report their subjective momentary physical and emotional states. However, certain conditions, including routine observable behaviors (eg, moods, medication adherence) as well as behaviors that may suggest declines in physical or mental health (eg, memory losses, compulsive disorders) cannot be easily and reliably measured via self-reports. OBJECTIVE: This study aims to examine a method complementary to EMA, denoted as peer-ceived momentary assessment (PeerMA), which enables the involvement of peers (eg, family members, friends) to report their perception of the individual's subjective physical and emotional states. In this paper, we aim to report the feasibility results and identified human factors influencing the acceptance and reliability of the PeerMA. METHODS: We conducted two studies of 4 weeks each, collecting self-reports from 20 participants about their stress, fatigue, anxiety, and well-being, in addition to collecting peer-reported perceptions from 27 of their peers. RESULTS: Preliminary results showed that some of the peers reported daily assessments for stress, fatigue, anxiety, and well-being statistically equal to those reported by the participant. We also showed how pairing assessments of participants and peers in time enables a qualitative and quantitative exploration of unique research questions not possible with EMA-only based assessments. We reported on the usability and implementation aspects based on the participants' experience to guide the use of the PeerMA to complement the information obtained via self-reports for observable behaviors and physical and emotional states among healthy individuals. CONCLUSIONS: It is possible to leverage the PeerMA method as a complement to EMA to assess constructs that fall in the realm of observable behaviors and states in healthy individuals.