Treatment decision-making among patients with oropharyngeal squamous cell cancer: A qualitative study
Introduction
The incidence of oropharyngeal squamous cell cancer (OPSCC) is rising, due to human papillomavirus (HPV) [1]. The growing population of patients with OPSCC that are expected to have excellent long-term survival has inspired investigation of deintensified treatment regimens aiming to preserve oncologic outcomes while reducing long-term toxicity [2]. Transoral surgery, intensity-modulated radiation therapy and immunotherapy offer deintensification strategies. While treatment paradigms evolve, little is known regarding the values, needs, and treatment preferences of this relatively new patient population [3].
With some exceptions, for patients with OPSCC curative therapy entails either radiation therapy or surgery, with or without adjuvant treatment [4]. Retrospective studies to date have found no significant difference in survival and oncologic outcomes among primary therapies, [5] and prospective data on the long-term functional outcomes for these treatment options is only beginning to emerge [6].
As a result, patients with OPSCC face a situation of clinical equipoise, that is, a choice between treatments with similar outcomes. The burden of this deliberation potentially generates unique decisional needs in this often anxious population [7]. For some, anxiety at diagnosis is related to the fact that their cancer was caused by a sexually transmitted infection (HPV) [8], [9], [10]. It is important to understand the needs of these patients in order to inform shared decision-making, which in turn can improve engagement, patient satisfaction, [11] quality of life, [12], [13] and health outcomes [14].
Qualitative research methods, which explore how people perceive and experience the world, have been used to describe patient decision-making in other cancer sites [15], [16], [17], [18], [19], [20]. This qualitative study describes the experiences and needs of patients making decisions regarding primary treatment for their OPSCC.
Section snippets
Material and methods
Patients from the Johns Hopkins Hospital and Greater Baltimore Medical Center in Baltimore, Maryland were recruited to join this qualitative research study. These institutions adhere to current National Comprehensive Cancer Network guidelines for OPSCC treatment [4]. Surgery is typically transoral robotic resection with concurrent neck dissection.
The study consisted of one-on-one, semi-structured interviews and focus group discussions with OPSCC patients to identify experiences of treatment
Results
Eleven interviews (n = 11) and three focus group discussions (n = 15; range 4–7 participants per group) were held between March 2018- September 2019. The interviews lasted a median of 32 min (range 22–39), and each focus group was around 90 min. Characteristics of the participants are described in Table 1.
Discussion
This is the first study to qualitatively capture the decisional experiences and needs of patients with OPSCC making treatment decisions. As patients who are surgical candidates are given a choice between primary treatments for their cancer, treatment choice is considered to be “preference-sensitive”. That is, decisions are based off of patient experiences during and outside of their consultations with the treatment team, representing ideal conditions for shared decision-making [26]. As
Declaration of Competing Interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
Acknowledgements
We are grateful to the participants who took part in this study. We acknowledge with special gratitude the efforts of Dorothy Gold, MSW, and Barbara Messing, SLP-CCC and Director, at the Milton J. Dance, Jr Head & Neck Cancer Center in facilitating this study. Thank you to the Milton J. Dance Endowment for awarding funding to this project.
Funding/support
This study was supported by the John R. Saunders, MD Research Award, the National Institute of Dental and Craniofacial Research [grant number R35DE026631], the National Institute on Deafness and Other Communication Disorders [grant number 5T32DC000027-29], and the National Cancer Institute [grant number T32CA0093140].
Role of the funder/sponsor
The funders had no role in the design and conduct of the study.
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