(129) Elucidating the Experience of Head and Neck Cancer Care in Focus Groups with Patients and Caregivers

Background/Significance: Head and neck cancer (HNC) is associated with increased patient distress, taking the form of ‎depression, anxiety, and stress (Calver et al., 2019). Patients with HNC face unique physical, functional, social, and ‎psychosocial challenges throughout the course of treatment and post-treatment that impact quality of life (QOL) and ‎require individualized care. Utilizing a patient-centered care (PCC) approach increases a team's capacity to address an ‎individual's unique set of symptoms, mitigating distress and improving QOL. We aimed to elucidate the patient experience ‎of treatment for HNC, with a focus on actionable recommendations for clinicians, to improve the provision of PCC.‎

Methods: Three focus groups were conducted with a total of thirteen participants (nine patients and four caregivers). Focus ‎groups were audio-recorded and transcribed verbatim. Inductive, thematic analysis of focus group transcripts was ‎conducted by two reviewers using Nvivo Data Management Software.‎

Results: Three overarching themes emerged from this analysis: Experience of Care, Psychosocial Factors, and Patient ‎Perception. The Experience of Care theme included: Symptom management, Compassionate care, Comprehensive care, ‎Uncompassionate Care and Communication. Many patients described compassionate care in terms of empathy, trust, and ‎agreed that they wanted to be acknowledged as human beings rather than by virtue of their cancer diagnosis. The ‎Psychosocial Factors theme included: Coping Mechanisms, Support, and Stigma. Several patients reported a reluctance to ‎access available psychosocial support services, especially in the post-treatment period. Finally, the Patient Perception ‎theme included: Hospital System, Personal Barriers, and Feedback. Most patients noted positive experiences with the ‎hospital system, particularly with its efficacy. Certain concepts, including the need for effective communication, were ‎relevant across themes.‎

Discussion: This study contributes to the growing literature on the experience of HNC care by capturing the patient and ‎caregiver perspective, including reported preferences and needs during and after treatment. Notably, many patients ‎expressed a desire to be acknowledged as part of the team rather than just "as a number" or even just "a patient". This is ‎consistent with recommendations for using a PCC approach.‎

The importance of effective communication between patients and healthcare providers was evident across categories in ‎different ways. For example, some patients linked uncompassionate care to lack of information and expressed feeling ‎unprepared for longer-term side effects of treatment. Patients also reported being uninformed about the availability of ‎psychosocial support, or the accessibility of such services. Misinterpretation and non-use of palliative care services also ‎emerged under communication and comprehensive care, respectively, with patients associating the term "palliative" with ‎‎"end-of-life" and, in turn, not utilizing the services available because their disease was treatable.‎

Conclusion/Implications: This study provided insight to the experiences of HNC patients and identified what their ‎preferences and needs are during their treatment. Identified themes can inform clinical practice to enhance quality of care, ‎as defined by both patients and caregivers.‎

References: ‎
‎1. Calver L, Tickle A, Biswas S, Moghaddam N. (2019). How patients adjust psychologically to the experience of head and ‎neck cancer: A grounded theory. Eur. J Cancer Care. 28(4): e13068. DOI: 10.1111/ecc.13068‎