We've all had a situation where it just wasn't realistic for the patient to complete the patient reported outcome measure. There could be a language barrier. Some patients don't have email or are completely unfamiliar with technology. Maybe the patient doesn't read.
Does it matter if a proxy is used for completing the patient reported outcome measure?
In order to answer the question, it's probably best to check out what can be found in a recent study discussing this particular question.
If I am understanding the research correctly, it seems that either option is reasonable for determining functional ability. It seems the area of most discrepancy revolves around cognitive focused questions. It seems when it comes to reporting function, there may be adequate reporting whether by the proxy or the patient.
As a side note, FOTO does capture who is completing the assessment.
Below you will find a quick view of the abstract.
Patients with cognitive impairment may have difficulty reporting their functional and cognitive abilities, which are important clinical outcomes. Health care proxies may be able to corroborate patient self-reports. Several studies reported discrepancy between patient and proxy ratings, though the literature is sparse on changes over time of these ratings. Our goals in this 12-month study were to compare patient and proxy reports on functioning, cognition, and everyday executive function, and to further elucidate correlates of patient-proxy discrepancy.
This was a prospective cohort study of individuals older than 70 years who ranged from having no cognitive impairment to having moderate dementia who had a proxy available to complete instruments at baseline (N=76). Measurements included Alzheimer's Disease Cooperative Study-Activities of Daily Living Inventory (ADCS-ADLI), Neuro-QOL Executive Function, PROMIS Applied Cognition (PROMIS-Cog), Mini-Mental State Examination (MMSE), and Geriatric Depression Scale.
Patient- and proxy-rated ADCS-ADLI were correlated at baseline and at 1-year follow-up. Patient and proxy ratings were discrepant on Neuro-QOL Executive Function and PROMIS-Cog. Greater patient-proxy discrepancy on PROMIS-Cog was associated with younger age and less depression, and greater patient-proxy discrepancy on Neuro-QOL Executive Function was associated with less depression and worse cognitive impairment. Patient-proxy discrepancy increased over time for everyday executive function. Changes in proxy-rated but not patient-rated ADCS-ADLI correlated with MMSE changes.
Patients and proxies generally agree in reporting on activities of daily living. Patient and proxy reports differ in their respective evaluation of cognitive functioning and everyday executive function. Ratings from both sources may be preferred for these two domains, though studies using gold standard measures are necessary. It is important that clinicians are aware of the differences between patient and proxy perspective to create an accurate clinical picture and guide treatment.
Patient Relat Outcome Meas. 2017 Mar 15;8:33-42. doi: 10.2147/PROM.S126919. eCollection 2017.