Patients want new treatments to improve their quality of life. However, do the typical outcomes reported by patients adequately reflect the impact of the new treatment on the factors that patients are most concerned about? Article Perfetto and others (2022) claims the answer is “no”.
The article notes that patients want not only improved functional status, but also fewer days in the hospital and avoid cases where there is a “failure to plan” and disruptions in work/study. In addition, others have suggested the development of patient-centered core intervention sets (PC-CIS). What is PC-CIS?
… Patient Oriented Impact Sets (PC-CIS) [are] a patient-composed and patient-priority list of the impacts of the disease and/or its treatment on the patient (and/or their family and caregivers). Intentionally broad and inclusive, the term “impact” includes short and long term health effects and any other related effects (eg, caregiver/family stress, economic burden, loss of career).
The authors group the impacts on disease-related impacts (eg, quality of life, functional status), treatment-related impacts (eg, adverse events, risk of failure), financial impacts (eg, career impacts, insurance coverage), and health care impacts. family/caregivers (e.g. family stress, family time). A number of Core Results Sets (COS) have been developed; in fact, the main indicators of the University of Liverpool efficacy test results (COMET) The initiative contains a database of published COS. To move from COS to prioritized PC-CIS, the article cites the National Health Council (NHC) structure for PC-CIS development (shown in the figure below).
When implementing PC-CIS, a number of problems arise. These include (i) a PC-CIS may need to be developed for each disease, which is a problem due to the volume of diseases, (ii) a PC-CIS for each disease may also vary by country, (iii) there is a lack of a standardized the PC-CIS development process, and (iv) it is not clear which institution(s) should be responsible for developing the PC-CIS. Despite these challenges, properly measuring how treatments impact the outcomes that patients care about the most is a laudable goal.