CoCo - participation: The development and clinical use of a novel inventory measuring cognitive complaints in daily life

Cognitive difficulties can be subtle and only come to light when patients return home from inpatient care and start to participate in society. Subjective cognitive complaints often interfere with participation, hence capturing cognitive complaints systematically is important. We developed a patient- and relative-reported measure to assess cognitive complaints during daily life activities across the memory, attention and executive domain for patients with acquired brain injury (ABI). The inventory Cognitive Complaints - Participation (CoCo-P) was created based on a literature review, consultations with experts, semi-structured interviews with patients, and a quantitative study. The inventory was administered to patients with ABI (n = 46), their relatives (n = 33) and healthy controls (n = 102) to finalize the inventory. We examined the reported complaints per daily life activity and cognitive domain of patients and healthy controls, and we compared the patients' and relatives' reports. The majority of patients (87-96%) experienced cognitive complaints, mostly related to attention, at work/education, during leisure activities, and in contact with family/friends and community. Patients reported more cognitive complaints than relatives. The CoCo-P seems appropriate to capture cognitive complaints in daily life in patients with mild ABI. Additional research is needed in terms of reliability and validity.