“They were waiting for me and welcomed me with great love and escorted me to my room” : a qualitative approach exploring patients’ experiences of cancer healthcare services

Abstract

Cancer is a complex illness whereby patients require access to various healthcare services provided by the multidisciplinary team over a prolonged period of time. Aim To explore patients’ experiences of cancer healthcare services whilst undergoing treatment with antineoplastic medicines. Methods This qualitative study involved in-depth semi-structured interviews with 16 patients diagnosed with colorectal cancer at the only national oncology centre available in Malta. Interviews allowed a detailed exploration of the patients’ lived experience with antineoplastic treatment on aspects relating to medicine-related beliefs, practice and burden (1). Interviews were held between December 2018 and November 2019, when patients were receiving their fourth or sixth cycle of treatment with XELOX or FOLFOX respectively. They were audio-recorded and transcribed verbatim in the native language, with a sample of 10% checked for transcription accuracy. Data saturation was established using a stopping criterion of three (2). Data were analysed thematically by two independent researchers with disagreements resolved through discussion. Results A total of 16 patients with colorectal cancer, aged between 38 and 78 years, were interviewed. Four themes emerged:1) experiences of patients of the cancer services, 2) healthcare professionals’ communication with patients, 3) patient’s perception of the role of the healthcare professional in the management of the illness, and 4) recommendations for the service. Patients were appreciative of the fast-track route for hospital appointments upon a diagnosis of cancer and the accessibility of a cancer-specific nurse navigator to address their challenges. Problems were mainly encountered in-between cycles while patients were at home, with difficulty in assessing the severity of adverse effects. This led to struggles with decision making and whether to self-refer to the emergency department or alternatively whether to seek verbal advice from the nurse navigator. Despite the generalised information provision during the nurse-led group information session at initiation of treatment, patients recommended an additional follow-up session for reinforcement of knowledge tailored to their own needs. Although most patients preferred to receive parenteral treatment under the surveillance of trained healthcare professionals in a hospital setting, they proposed activities such as individual or group counselling and educational treatment-specific sessions or peer-led discussion during treatment administration. ‘Initially I had no symptoms however these cropped up around 4th cycle. Having meetings with healthcare professionals whilst receiving chemo allows sharing of information about this specific treatment.’[P004] Recommendations made by patients included medicine review taking into account their chronic medicines and provision of knowledge to assess the severity of their adverse effects experienced at home ‘Due to my heart problems, I wonder whether another ‘safe’ medicine may be used…prefer to discuss this with healthcare professional whilst having a review of all my medicines.’[P003] Conclusion This study highlighted that timeliness and accessibility of healthcare services are crucial in cancer care and are greatly appreciated by the patients. The limitation of the study was that views were only captured from those participants who consented to be interviewed. The introduction of interventions along the treatment journey to address their current needs was recommended.