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M. Lai

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    ORAL 27 - Care (ID 123)

    • Event: WCLC 2015
    • Type: Oral Session
    • Track: Advocacy
    • Presentations: 1
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      ORAL27.03 - Patient Advocates in the Lung Cancer Diagnostic Pathway: A Qualitative Study of Interviews with Lung Cancer Patients and Their Caregivers (ID 225)

      10:45 - 12:15  |  Author(s): M. Lai

      • Abstract
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      • Slides

      Despite lung cancer being the leading cause of cancer death in developed countries, there is surprisingly little qualitative research that documents lung cancer patients’ diagnostic pathway and beyond. Recent evidence from the UK highlighted that people diagnosed with the disease will have had three or more consultations with their family physician (general practitioner, GP) before referral to a lung cancer specialist. This study aimed to document the diagnostic pathway from the patient perspective through qualitative interviews and process mapping. The study is one component of a lung cancer implementation research program in the Australian setting.

      We developed a qualitative interview schedule to conduct with patients and their caregivers. We recruited participants via treating clinician (respiratory physician/pulmonologist or medical oncologist) by sending a personal invitation letter. All patients were at least six months post-diagnosis at the time of first invitation and we obtained human ethics committee approvals. Interviews were conducted by telephone or face-to-face, according to the participant’s preference. All interviews were recorded, transcribed and coded using a coding framework developed by four members of the investigator team (SY, NR, ML, PB). The transcripts were coded in NVIVO 10 software. We interpreted the transcripts with two specific purposes in mind: first, to draw detailed maps of their journey, documenting the key points about which participants spoke about. Secondly, we conducted a content analysis and developed qualitative themes to understand and interpret patient journeys.

      Twenty lung cancer patients participated in the qualitative interviews. Interviews took about one hour to complete. The patient journey maps provided rich data to understand the complexity of pathways that patients experience in the lead up to their lung cancer diagnosis, their subsequent treatment through to survivorship or palliation phase. A number of patients recalled very precise information about their journey and had recorded diary entries of key dates or times in their diagnostic pathway. We examined all the maps to identify common elements in the pathways. We used the qualitative material to understand how patient care was coordinated across the journey and will report on specific themes. In particular, we will highlight the theme of advocacy. It was evident that hospital-based clinicians were frequently perceived as the coordinator of their patient’s care. We will discuss their role in advocating for urgent patient diagnostic investigations when these were necessary. These clinicians were frequently perceived by patients as their advocates beyond diagnosis, as were GPs where the patient had an established relationship with this physician. We will also address the themes of patient anxiety and self-advocacy, and provide specific examples of how patients self-managed their care.

      The patient journey through lung cancer diagnosis is complex and qualitative interviews provide a rich source of information to better understand how clinicians and family physicians advocate for patients, and how some patients self-advocate in their care. The resulting patient maps and qualitative material will inform lung cancer implementation research projects to address the diagnostic pathway and improving patient care.

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