Patients need new treatments to improve their quality of life. However, do typical patient-reported outcomes adequately reflect the impact of new treatments on the factors that patients are most concerned about?A paper by Perfect etc. (2022) Think the answer is no.
The article states that patients not only want to improve functional status, but also want to reduce hospital stays and avoid “unplanned” and work/school disruptions. In addition, another proposal to develop a patient-centered core impact device (PC-CIS). What is PC-CIS?
…patient-centred core impact device (PC-CIS) [are] A patient-derived and patient-prioritized list of the impact of the disease and/or its treatment on the patient (and/or their family members and caregivers). Intended to be broad and inclusive, the term “impact” includes both short- and long-term health outcomes and any other relevant effects (eg, carer/family stress, financial burden, occupational loss).
The authors divided impacts into disease-related impacts (eg, quality of life, functional status), treatment-related impacts (eg, adverse events, risk of failure), financial-related (eg, occupational, insurance coverage impacts) ) and health effects. Family/carers (eg, family stress, family time commitment). A number of core outcome sets (COS) have been developed; in fact, the University of Liverpool’s core outcome measure in the effectiveness trial (comet) initiative contains a database of published COSs. In order to move from COS to preferential PC-CIS, this paper cites the National Health Commission (NHC) framework for developing PC-CIS (shown below).
Implementing PC-CIS presents many challenges. These include (i) PC-CIS may need to be developed for each disease, which is a challenge due to the number of diseases, (ii) PC-CIS for each disease may also vary by country, (iii) lack of development of PC – Standardized process for CIS, and (iv) it is unclear which agency should be responsible for developing PC-CIS. Despite these challenges, properly measuring how treatment affects outcomes that patients care about most is a laudable goal.
