Informational Needs of Lung Cancer Patients and Caregivers

The provision of information is critical to the care and support for cancer patients. Relevant information leads to lower anxiety, increased patient control and involvement in decision-making, greater satisfaction, and improved coping skills. To identify the unique needs of lung cancer patients and their caregivers (LPCs), a needs assessment was conducted. LPCs who attended lung cancer clinic completed a self-report survey that assessed informational needs across 6 domains: medical, physical, practical, social, emotional, and spiritual. The questionnaire investigated the importance of information as well as the preferred mode of delivery. One hundred three patients and 96 caregivers completed the survey. Most patients were female (57%), with a median age of 70 (33-91). Most patients were born outside Canada (65%); and majority (56%) identified as Caucasian followed by East Asian (23%). Most patients had non-small cell lung cancer (64%) and were receiving treatment (64%), and half had metastatic disease at diagnosis. Most caregivers were female (65%), median age 55 (23-85), were the primary caregiver (84%), and spent 20 + h/week caregiving (44%). LPCs prioritized the medical and physical domains, with a focus on treatment options, prognosis, managing symptoms, follow-up visits, and complications. One-on-one counseling with a healthcare provider was the preferred method for the medical domain. Caregivers also preferred one-on-one counseling for the physical domain, while patients preferred pamphlets. This study highlights the information that LPCs need and the format they wish to receive it in. The results will guide the development of tailored resources to address specific needs.