Engaging Patients as Partners in Developing Patient-Reported Outcome Measures in Cancer-A Review of the Literature

Tools to collect patient-reported outcome measures (PROMs) are frequently used in the healthcare setting to collect information that is most meaningful to patients. Due to discordance among how patients and healthcare providers rank symptoms that are considered most meaningful to the patient, engagement of patients in the development of PROMs is extremely important. This review aimed to identify studies that described how patients are involved in the item generation stage of cancer-specific PROM tools developed for cancer patients. A literature search was conducted using keywords relevant to PROMs, cancer, and patient engagement. A manual search of relevant reference lists was also conducted. Inclusion criteria stipulated that publications must describe patient engagement in the item generation stage of development of cancer-specific PROM tools. Results were excluded if they were duplicate findings or non-English. The initial search yielded 230 publications. After removal of duplicates and review of publications, 6 were deemed relevant. Fourteen additional publications were retrieved through a manual search of references from relevant publications. A total of 13 unique PROM tools that included patient input in item generation were identified. The most common method of patient engagement was through qualitative interviews or focus groups. Despite recommendations from international groups and the emphasized importance of incorporating patient feedback in all stages of development of PROMs, few unique tools have incorporated patient input in item generation of cancer-specific tools. Moving forward, a framework of best practices on how to best engage patients in developing PROMs is warranted to support high-quality patient-centered care.