Bringing a humanistic approach to cancer clinical trials
OBJECTIVE To explore patient perspectives on and experiences with the coordination and continuity of cancer care. DESIGN Qualitative study using semistructured telephone interviews. SETTING Canada. PARTICIPANTS Thirty-eight breast and colorectal cancer survivors 1 to 4 years after diagnosis. METHODS Using a constructivist grounded theory approach, semistructured telephone interviews were conducted with the participants. The interviews were digitally recorded, transcribed verbatim, and proofread. Transcripts were reviewed to create a focused coding scheme that was used to develop categories for participants' experiences. MAIN FINDINGS Although this study focused on the continuity of cancer care, patients described their experiences with cancer care in general, concentrating predominantly on their relationships with individual health care providers (HCPs). Based on patients' experiences, several themes were identified as the core components of providing good continuity and well coordinated care. The most important overarching theme was communication, which overlapped with 4 other themes: patient-HCP relationships, the role of HCPs, lack of access to care, and timely and tailored information. CONCLUSION Patients believed that good communication between HCPs and patients was key to improving the overall continuity of cancer care. Continuity of care is an important theoretical concept in cancer care, but it is not easily recognized by patients. They perceive the cancer care continuum and continuity of care as cancer care in general, which is typically framed by the individual relationships with their HCPs. Future research and interventions need to focus on finding and testing ways to improve communication to enhance continuity of cancer care.