Elsevier

Oral Oncology

Volume 112, January 2021, 105044
Oral Oncology

Treatment decision-making among patients with oropharyngeal squamous cell cancer: A qualitative study

https://doi.org/10.1016/j.oraloncology.2020.105044Get rights and content

Highlights

  • Oropharyngeal cancer patients endorsed distress at diagnosis and decisional conflict.

  • Decisional factors included doctor’s recommendation and avoidance of adverse effects.

  • Patients inhabit multiple decisional roles, with varying degrees of autonomy.

  • A desire for patient-centered information was apparent.

  • Our findings can be used to guide patient-centered communication.

Abstract

Oropharyngeal squamous cell cancer (OPSCC) is now the most common site of head and neck squamous cell cancer. Despite the focus on treatment deintensification in clinical trials, little is known about the preferences, experiences and needs of patients with OPSCC when deciding between surgery and radiation therapy as primary treatment with curative intent. In this qualitative study, pre-treatment and post-treatment oropharyngeal cancer patients were recruited to take part in one-on-one interviews (n = 11 pre-treatment) and focus group discussions (n = 15 post-treatment) about treatment decision-making. Recordings were transcribed and assessed for emergent themes using framework analysis. From the one-on-one interviews and focus group discussions with OPSCC patients, fourteen themes were identified. Participants expressed alarm at diagnosis, decisional conflict, and a variety of roles in decision-making (physician-controlled, shared, and autonomous). Decisions were driven by the perceived recommendation of the treatment team, a desire for physical (surgical) tumor removal, fear of adverse effects of treatment, and patient-specific values. Although participants felt well-informed by their treating physicians, they identified a need for additional patient-centered information. Participants were critical of the poor quality of information available on the internet, and acknowledged the advantage of hearing the experiences of post-treatment patients. The experiences identified herein may be used to guide patient-centered communication during patient counseling and to inform interventions designed to support patients’ needs at diagnosis, ultimately helping to implement high-quality, patient-centered care.

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.

References (41)

  • M.J. Windon et al.

    Priorities, concerns, and regret among patients with head and neck cancer

    Cancer

    (2019)
  • M. Taberna et al.

    Significant changes in sexual behavior after a diagnosis of human papillomavirus-positive and human papillomavirus-negative oral cancer

    Cancer

    (2017)
  • D. Stacey et al.

    Exploring cancer treatment decision-making by patients: a descriptive study

    Curr Oncol

    (2010)
  • M.S. Kashaf et al.

    Does shared decision making in cancer treatment improve quality of life? A systematic literature review

    Med Decis Making

    (2015)
  • R.L. Street et al.

    Patient participation in deciding breast cancer treatment and subsequent quality of life

    Med Decis Making

    (1997)
  • S.J. Griffin et al.

    Effect on health-related outcomes of interventions to alter the interaction between patients and practitioners: a systematic review of trials

    Ann Fam Med

    (2004)
  • S. Sattar et al.

    Chemotherapy and radiation treatment decision-making experiences of older adults with cancer: a qualitative study

    J Geriatr Oncol

    (2017)
  • W.Y. Jen et al.

    Qualitative study of factors affecting patient, caregiver and physician preferences for treatment of myeloma and indolent lymphoma

    Patient Prefer Adherence

    (2020)
  • R.M. Schwartz et al.

    Thoracic surgeon and patient focus groups on decision-making in early-stage lung cancer surgery

    Future Oncol

    (2017)
  • O.L. Owens et al.

    'I'm not a chance taker': a mixed methods exploration of factors affecting prostate cancer treatment decision-making

    Ethn Health

    (2019)
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