What do patients and their carers experience in a lung cancer referral pathway? a qualitative study.

Background: Lung cancer referral pathways aim to reduce delays and improve referral patterns of people with suspected lung cancer. As part of implementing lung cancer referral pathway at a regional Australian hospital, this study aimed to explore the experiences and perceptions of people with lung cancer and their carers. Methods: In-depth interviews were used to elicit data for thematic analysis in this cross-sectional qualitative study. Newly diagnosed lung cancer patients and their carers at an academic cancer centre were invited to participate in interviews. Five interviews were conducted face-to-face, and fourteen interviews were conducted by telephone (as per interviewee preference). Interviews were audio-recorded, transcribed, and qualitatively analysed. Descriptive phrases were used to generate initial inductive codes and themes. Results: Nineteen out of 36 participants approached agreed to take part in the study. Important aspects for participants identified were: quality of communication from clinicians, timeliness of investigations and specialist referrals, patient advocacy, psycho-social support, and co-ordination of care. Various difficulties experienced which reduced their perception of quality of care were reported by some patients and their carers. Tele-health consultations, including telephone consultations, were being used widely due to the COVID 19 pandemic. Factors which positively impacted the care experience were good communication, timeliness and patient advocacy and support. Improper communication, long waiting times for investigations and appointments, uncertainty about the process and inconsistent providers negatively impacted the care experience. Participants preferred face to face or video-linked consultations over telephone consultations. Conclusions: Proper communication, timeliness and adequate psycho-social support were perceived as important factors in improving satisfaction of lung cancer patients and their carers during the referral pathway. Methods to improve communication by clinicians, reduce delays and provide support care during the referral pathway should be explored further.