Abstract
Purpose:
Patients with recurrent head and neck cancer (HNC) may feel overwhelmed at the prospect of having to consider treatment options particularly if they recently completed treatment for their primary disease, or when they have no options that may lead to long-term survival. The purpose of this study was to examine patient priorities and preferences during treatment decision-making for recurrent HNC.
Methods:
Individuals with newly diagnosed recurrent HNC were recruited at a National Cancer Institute-Designated Cancer Center. Participants were interviewed using a structured interview guide. Descriptive statistics were used to describe participants, and qualitative template analysis was used to analyze interview data.
Results:
Participants (n=38) considered information from healthcare providers, likelihood of treatment success, as well as other patient-specific factors in making their treatment decisions.
Conclusions:
Although patients with recurrent HNC endorse a myriad of decision-making factors, the recommendation of their healthcare provider and the likelihood of treatment success are of paramount importance. Future research should focus on methods to rapidly identify patient priorities at the time of diagnosed recurrence while respecting patient coping and communication styles.
Keywords: head and neck cancer, recurrence, decision-making, quality of life, survivorship
1). Introduction
Over half a million individuals worldwide are diagnosed with head and neck cancer (HNC) annually.[1] Unfortunately, over 60% of these individuals are not diagnosed until they have Stage III or IV cancer and are, therefore, at high risk for disease recurrence.[2] Concurrent chemoradiation is used in patients with locally advanced disease, as well as in post-operative patients who are at high risk for recurrence.[3] Patients who undergo this aggressive treatment regimen may experience functional decline, disfigurement, psychological distress, and social anxiety.[4,5]
Despite aggressive treatment, the incidence of HNC recurrence may be as high as 30–50% in patients treated with curative intent.[6,7] Patients with recurrent HNC must decide what, if any, type of additional treatment they desire. Previous studies of patient priorities at the time of primary HNC diagnosis indicate that being cured, living as long as possible, and having no pain are of greatest importance. [8–10] Although ability to perform daily tasks, oral function, and appearance were also rated as important, they were not given priority over cure, extension of life, and minimization of pain.[8–10]
Unfortunately, additional treatment for HNC recurrence may be accompanied by increasing morbidity. Depending on the extent of recurrence, radical surgical resections of curative intent may cause not only a great level of disfigurement, but also result in even more functional impairment and severe decline in quality of life if an individual is no longer able to speak or swallow.[11] In addition to disfigurement and physical dysfunction, because the majority of these patients have already received radiation, complication rates can be higher than in previously untreated patients.[11,12] Side effects from radiation and/or palliative chemotherapy may also reduce quality of life in some patients.[13,14]
Unfortunately, median survival of patients with recurrence is 6–12 months depending on a variety of factors including extent and location of recurrence, tumor pathology, time since primary treatment was completed, previous response to treatment, and performance status.[15] Although the risks of disease and treatment toxicities are influenced by the site and extent of recurrence, predictive models are imperfect, and unfortunately, the outcome cannot easily be predicted.[16]
In light of the considerable morbidity that patients may experience, it is essential that treatment options for patients with recurrent HNC be approached in a holistic manner with individual priorities and preferences in mind.[13,17–19] Although preferences around end of life care for patients with HNC have been explored, no studies have examined decision-making at the time of a diagnosed recurrence.[20] Important empirical studies of patients with recurrent HNC have previously focused on physician choice of treatment, response to treatment, and mortality rather than the patient experience of navigating a diagnosis of recurrent HNC.[21–23] A patient-centered focus is needed, therefore, to understand these individuals’ priorities and preferences rather than using a priori assumptions to describe the experiences of those with recurrent HNC. It is important to add the voice of patients with recurrent HNC to the current body of literature. A phenomenological, qualitative approach to this inquiry is particularly appropriate given the need to understand patient experiences and build knowledge and understanding around this important area.[24] Therefore, the purpose of this study was to explore treatment decision-making for recurrent HNC using a descriptive, qualitative approach in order to understand the priorities and preferences of patients with recurrent HNC.
2). Materials and Method
2.1). Design
This study utilized a descriptive, cross-sectional, qualitative approach and complied with Consolidated Criteria for Reporting Qualitative Research (COREQ) (see Supporting Information file).[24,25] This study was nested in a larger study examining patients with recurrent HNC.
2.2). Participants and Setting
A convenience sample of individuals with newly diagnosed recurrent HNC were recruited at Vanderbilt Ingram Cancer Center (VICC) in Nashville, Tennessee, USA from March 2015 to November 2016. Additional participant inclusion criteria were: 1) age 18 years or older; 2) past completion of treatment for primary HNC; 3) ability to speak and understand English; 4) ability to provide informed consent.
Individuals with a medical documentation of cognitive impairment that would preclude the ability to provide informed consent were excluded. No restrictions were placed on the type of treatment previously received or the number of HNC recurrences for inclusion in the study.
2.3). Procedures
Institutional Review Board (#141575) and Scientific Review Committee (#VICC SUPP 1530) approval were obtained prior to any study activities. Research assistants attended weekly tumor board meetings and reviewed the medical records of all patients at VICC with a possible new diagnosis of recurrent HNC. Eligible individuals were then approached in-person at their next medical oncology, radiation oncology, or head and neck surgery appointment. No relationship was established with research participants prior to study commencement. A trained research nurse explained the purpose of the study to eligible participants and those who wished to participate completed informed consent. After providing informed consent, demographic, disease, and treatment characteristics were collected from participants via self-report. Disease and treatment characteristics were confirmed via chart review when available by research personnel. Participants were interviewed by the principal investigator (BR), who is a nurse scientist, or a trained research nurse (NP, JS, or EC) either in person, in a private clinic room, or over the phone within one week of providing informed consent at a time convenient for the participant. Participants were allowed to be accompanied by anyone of their choosing during the interviews. A structured interview guide was developed by BR and BM, a head and neck medical oncologist, based on their research and clinical expertise in the area of head and neck cancer (Table 1) in order to understand the priorities and preferences of patients when considering treatment for recurrent HNC. Interviewers read each question verbatim and asked follow-up questions, if necessary, to clarify participant responses. All interviews were audio recorded and then transcribed verbatim.
Table 1.
Interview Guide
| What have your doctors told you about your disease? |
| Was the information your doctors told you about your disease the same or did you hear different things from different doctors? |
| How has the similarity or dissimilarity of information made you feel? |
| What have you been told about the risks and benefits of additional treatment for your disease? |
| How are you dealing with this diagnosis emotionally? |
| How is your family dealing with this diagnosis emotionally? |
| Have you made a decision about what you want to do? |
| If yes - What factors have influenced that decision? |
| How have your symptoms impacted your decision? |
| How has your family impacted your decision? |
| Howe have your finances impacted your decision? |
| Are there any other factors that have influenced your decision? |
| If no - what are your concerns that are preventing you from making that decision? |
2.4). Analysis
Research Electronic Data Capture (REDCap),[26] hosted at Vanderbilt University, and Dedoose Version 8.0.35[27] software applications were used to analyze study data. Descriptive statistics were generated in REDCap and used to summarize participant characteristics. Interview transcripts were analyzed using qualitative template analysis, a form of thematic analysis that emphasizes the use of hierarchical coding.[28] Analysis of interview data was conducted by the principal investigator (BR), a graduate student (JS), and two research assistants not involved in data collection (KH, BB). Dedoose software was used to organize the data. Analysis began with each team member reading all of the interviews for familiarity. The structured interview guide served as the initial template. Preliminary coding of the data based on categories of responses to each interview guide question was performed independently by each team member on at least 15 interviews. Team members then met to compare code and sub-code categories in order to obtain consensus. As saturation of codes and sub-code categories occurred within the initial 20 interviews, the team agreed on an analytical template to use on the full data set. Team members used this template to independently code each participant interview transcript.
3). Results
3.1). Participant Characteristics
Sixty-three individuals were approached to participate in this study. Thirteen individuals declined to participate, and 50 individuals provided informed consent and agreed to participate in the study. Only 38 individuals, however, completed all initial study activities and were included in study analyses. Of the 12 participants who withdrew from the study, one participant’s diagnosis of recurrent HNC was amended and eleven participants did not complete baseline questionnaires as they felt too overwhelmed by their illness to participate. Seven of the withdrawn participants completed demographic information prior to withdrawing from the study. There was a statistically significant difference in the primary tumor site of these seven individuals with cancer of the larynx and nasal cavity/paranasal sinuses being more common (Table 2). Other reported demographic and clinical characteristics were not statistically significant, although small sample size may have artificially masked these differences. The average age of participants (n=38) was 63.3 years. The majority were male (n=29, 76%) and married (n=24, 63%). The most frequent primary tumor site was the pharynx (n=11, 29%) followed by the oral cavity (n=9, 24%), larynx (n=5, 13%), salivary gland (n=5, 13%), and nasal cavity/paranasal sinuses (n=4, 11%). All participants had received primary treatment for HNC with slightly more than half (n=21, 55%) having undergone concurrent chemotherapy and radiation (CCR). Half of participants had previously had surgical treatment for HNC. Of those who had received surgical treatment for their primary disease (n=18), six had a partial neck dissection, six had a parotidectomy, two had a radical neck dissection, one had a partial mandibulectomy, one had a partial maxillectomy, and one had a resection of the nasal sidewall and orbital exenteration.
Table 2.
Participant Characteristics
| Included in Analysis (n=38) | Withdrew from study before completing baseline study documents (n=7) | ||
|---|---|---|---|
| Age | |||
| mean (SD) | 63.3 (10.0) | 67.4 (7.8) | p = 0.31 |
| median, | 65 | 72.6 | |
| min, max | 41, 81 | 58, 77 | |
| Gender | n (%) | ||
| Male | 29 (76.3) | 5 (71.4) | p = 0.78 |
| Female | 9 (23.7) | 2 (28.6) | |
| Marital Status | |||
| Married | 24 (63.2) | 3 (42.9) | p = 0.46 |
| Single | 8 (21.1) | 3 (42.9) | |
| Widowed | 6 (15.8) | 1 (14.3) | |
| Recurrence Number | |||
| First Recurrence | 30 (78.9) | 4 (57.1) | p = 0.34 |
| > 1 Recurrence | 8 (21.1) | 3 (42.9) | |
| Primary Tumor Site | |||
| Pharynx | 11 (28.9) | 0 (0.0) | p < 0.01 |
| Oral Cavity | 9 (23.7) | 0 (0.0) | |
| Larynx | 5 (13.2) | 5 (71.4) | |
| Salivary Gland | 5 (13.2) | 0 (0.0) | |
| Nasal Cavity/Paranasal Sinuses | 4 (10.5) | 2 (28.6) | |
| Other/Unknown | 4 (10.5) | 0 | |
| Primary Cancer Stage | |||
| X/Unknown | 25 (65.8) | 6 (85.7) | p = 0.84 |
| I | 3 (7.9) | 0 (0.0) | |
| II | 2 (5.3) | 0 (0.0) | |
| III | 3 (7.9) | 0 (0.0) | |
| IVa | 4 (10.5) | 1 (14.3) | |
| IVb | 1 (2.6) | 0 (0.0) | |
| Treatment for Primary Disease | |||
| Concurrent Chemotherapy and Radiation | |||
| Yes | 21 (55.3) | 4 (57.1) | p = 0.93 |
| No | 17 (44.7) | 3 (42.9) | |
| Induction Chemotherapy | |||
| Yes | 11 (28.9) | 2 (28.6) | p = 0.99 |
| No | 27 (71.1) | 5 (71.4) | |
| Surgery | |||
| Yes | 19 (50.0) | 3 (42.9) | p= 0.73 |
| No | 19 (50.0) | 4 (57.1) | |
| Radiation Only | |||
| Yes | 8 (21.1) | 1 (14.3) | p= 0.68 |
| No | 30 (78.9) | 6 (85.7) | |
3.2). Participant Discussion of Treatment Decision-Making
Interviews lasted between 15 minutes and 1 hour. Participants spoke about what influenced their treatment decision-making. Our analysis identified the following six major themes: information from health care providers, likelihood of treatment success, risks and benefits of treatment, no other option, type of treatment available, and patient-specific factors affecting decision-making.
The following sections include representative quotes that demonstrate the views shared by participants. Some participants responded directly and succinctly to interview questions without offering elaboration, while others elaborated on their answers. Twenty-two direct quotes demonstrating the six major themes are depicted below. These statements were made by 22 separate study participants. The experiences of participants whose direct quotes are not included below are represented by their fellow study participants with similar experiences. As participants’ decision making was multifaceted, the following themes and subthemes should not be considered mutually exclusive. Theme and subtheme presence in interviews are depicted in Table 3.
Table 3.
Theme/Subtheme Presence in Interviews
| Theme/Subtheme | n (%) |
|---|---|
| Information from Health Care Providers | |
| • Significant Influence | 19 (50.0) |
| • Congruent | 33 (86.8) |
| • Incongruent | 5 (13.2) |
| Likelihood of Treatment Success | 21 (55.3) |
| Risks and Benefits of Treatment | |
| • Important | 18 (47.4) |
| • Minimization | 12 (31.6) |
| • No Acknowledgment | 8 (21.1) |
| No Other Option | 13 (34.2) |
| Type of Treatment Available | 8 (21.1) |
| Patient-Specific Factors | |
| • Family’s Support | 32 (84.2) |
| • Symptom Burden | 17 (44.7) |
| • Money Matters | 11 (28.9) |
3.2.1). Information from Health Care Providers
Patients highly valued the recommendation(s) of their health care providers. Half of participants (n=19) clearly indicated that physician recommendation significantly influenced their treatment decision.
“My doctor, I leave everything in his/her hands, so he/she’s the boss, I go along with him/her. I don’t make no decisions, he/she makes them for me and he she explains to me what is going to have to be done from one point A to point B, from that on, just like that. So really and truly I go along with him/her in every way.”
“…I’m going to do whatever they say.”
“I definitely want to do whatever Dr. [redacted] thinks is best…Whatever he/she says we need to do, we’ll do.”
Although participants met with a variety of specialists including medical oncologists, radiation oncologists, and head and neck surgeons to determine the best course of treatment, the majority of participants (n=33, 87%) reported receiving congruent information in terms of prognosis and recommendation for treatment from their specialists while others reported incongruity in the information they were given (n=5, 13%).
Congruent information reassured many participants.
“It made me feel confident that they knew what they were talking about and what they were dealing with.”
“It makes me feel like I have a team of doctors that are on the same page.”
Some participants, however, felt worse after receiving congruent bad news from multiple specialists.
“We kind of feel depressed.”
“(long pause) I thought it sucked.”
Participants who received incongruent information had differing responses.
Some felt frustrated.
“I mean, that’s a…That’s a lot of stress is being told one thing, going to another doctor being told another, in the same day or within the same week. Nothing… you know, nothing major should have changed, but you’re being told different things. So, it’s very frustrating.”
Other patients felt hopeful.
“(Laughs) Oh my gosh. One totally told me… you know the first one was obviously awful. And…I’m trying to think. You know that wasn’t… you just feel desperate and it was just- that one was awful (crying) and then…the second one was such a wonderful relief.”
3.2.2). Likelihood of Treatment Success
More than half of participants (n=21, 55%) indicated that the likelihood of treatment success, however defined by the participant, was of significant importance in making a treatment decision.
“Uh … as long as they tell me they’ve got a chance of me getting well, we’ll go ahead with it, but basically where there’s no chance of, you know, doing anything at all, we’ll just quit.”
3.2.3). Risks and Benefits of Treatment
The risks and benefits of treatment were an important part decision-making process for many participants (n=18, 47%). Many of these individuals acknowledged and verbalized the possible morbidities associated with treatment.
“Okay. Losing some, um, facial nerves that operate the mouth and eyelids and, um, being able to have full rotation of the arm and stuff because of the- all the nerves in that side of the neck. Um, the other two surgeries, they had taken all the lymph nodes out on this side of the face, so my face doesn’t drain well on that side. So, they told me, uh, all the risks that- and uh, and some of the risks that they said I might have, I-I didn’t have, so that was good. So, I feel like they- they informed me well of what was going to happen.”
When asked about the importance of the risks and benefits of additional treatment, some participants (n=12, 32%) minimized or avoided information and some (n=8, 21%) simply did not acknowledge having been given any information even though these discussions were reflected in the medical record.
“It is some risk but I can’t remember.”
“Um, I haven’t been told anything yet.”
3.2.4). No Other Option
Some participants (n=13, 34%) felt like they had no other option than to go with the treatment presented for them.
“I have no other choice, this is the only one…there is only one way this time… to go to do the surgery.“
3.2.5). Type of Treatment Available
The type of treatment available was an important factor for some participants (n=8, 21%), particularly those who wanted avoid morbidity associated with more invasive treatment options.
“Uh, when, when Dr. [redacted] told me that the only alternative is yanking out my throat, I… that isn’t my idea of getting well. But I would likely go around with probably no, no voice, even worse than this, you know with one of those gadgets, and maybe even that wouldn’t work. Uh, I’ve already got a… a, uh… Feeding tube. So, I just... It just wasn’t, didn’t seem to be an alternative to me. Too radical.”
“Well, it’s a tough situation, the tumor is at the base of my tongue, um, if I have surgery it’s very likely, uh it’s possible, it’s very possible that I would have to have my entire tongue removed and that I would have to from there forward be unable to speak or swallow. I would have a permanent feeding tube and a- a tracheotomy so that I could breathe. And I have decided after talking to my wife, and my minister, and several other family members and close friends, I have decided that the surgery is not something I am going to want. So, we are going to go the chemo route and see what that gives us. But, I’ve, I- I don’t want to have my tongue removed.”
3.2.6). Patient-Specific Factors
Other patient specific factors that affected treatment decision-making included family’s support (n=32, 84%), symptom burden (n=17, 45%), and money matters (n=11, 29%).
3.2.6a). Family’s Support
“Because I have a beautiful daughter …And I want to see her graduate high school and college and, yeah….”
“You pushed me to come here (looking at relative).”
3.2.6b). Symptom Burden
“Well, they play a major role in it. If you… If, uh, I felt like I was going downhill instead of uphill, it would have a big impact on what my decisions are.”
“Like I said, if- if it’ll buy me some time, just, long-long period of time, not just a week or a day or a month, but maybe a year or two, you know, and not be sick as a dog, be healthy enough to-to do some things together, then I’m all for it. If it’s just gonna make me sick, and I’m gonna stay sick- I’ll stay alive but stay sick for six months or a year or longer- it’s not worth it, you know?”
3.2.6c). Money Matters
“Well once upon a time, huh, I probably wouldn’t have even checked into it because of finances, but… there’s programs out there that’s pretty good and helpful, so, that changed my mind.”
“The availability of it and the affordability of it.”
3.2.7). Gender Differences
Although the majority of participants were male (76.3%), some differences in response categories were noted among male and female participants. A greater proportion of male participants than female participants (69% vs 33%) minimized or didn’t acknowledge having received information on the risks and benefits of treatment for their recurrent disease. A greater proportion of female participants (100% vs 89%) indicated family support as an important treatment decision making factor while a greater proportion of male participants (34% vs 22%) indicated money matters as an important factor. A greater proportion of male participants (55% vs 44%) also indicated that they felt like that had “no other option” than to proceed with the treatment presented to them.
4). Discussion
This study examined the priorities and preferences of patients with recurrent HNC. While the vast majority of the current literature on recurrent HNC focuses on treatment options and survival, this study focused on the patient experience. Participant characteristics were similar to other studies of patients with recurrent HNC.[28,29]
4.1). Participant Discussion of Treatment Decision-Making
Half of participants indicated that physician recommendation significantly influenced their treatment decision. Other studies of cancer treatment decision making have demonstrated that patients with a high level of trust in their healthcare provider greatly value their treatment recommendation.[30–32]
The overwhelming majority of participants reported receiving congruent information from their healthcare providers. This is reflective of the team-based care provided at the National Cancer Institute-designated Comprehensive Cancer Center where this study was conducted. Communication among oncology healthcare providers has been shown to be an essential yet challenging aspect of coordinated, multispecialty care.[33] Reactions to congruence or incongruence of information from healthcare providers depended on what information was being conveyed and how positive the prognosis was. For those who had congruent information from their healthcare provider, there were two reactions: people were happy because it helped them trust their healthcare providers’ abilities, or they were disappointed because it meant they had consistently received bad news. For those who received incongruent information, while some were frustrated, others who had first been given a poor prognosis welcomed differing information from a subsequent healthcare provider. A previous study of patients with cancer indicated that patients and caregivers highly value receiving consistent information about their treatment options.[34]
Likelihood of treatment success (however the patient defined success) and healthcare provider recommendation were also important for the majority of study participants. Confidence from the healthcare provider about treatment options seemed to affect confidence of the patient. If a healthcare provider felt confident about the options, process, and success of a treatment choice, then the patient seemed to feel better and more confident about not only the potential treatment success, but in their ability to deal with the treatment experience a second time. While some participants appeared to rely solely on their healthcare providers’ recommendation with regard to treatment options, others weighted their treatment decisions more heavily on their individual preferences. There seemed to be a divide between those who just wanted to live no matter the cost and those who wanted to live with a good quality of life. Some wanted to live regardless of morbidity while others wanted to live well for whatever amount of time they had left. Those who wanted to maintain a higher quality of life expressed the prioritization of not being a burden on their family and not being individually put through more trauma. Another study of this population demonstrated the overwhelming patient prioritization of having the disease cured and continued survival with quality of life being a secondary concern.[35] This is also congruent with studies of patients at the time of primary HNC diagnosis.[8–10]
While each participant had been informed of the risks and benefits of additional treatment at the time of their interview, participants had varying responses when asked about that information. Almost half of participants clearly stated the risks and benefits of which they had been informed. Other participants minimized or did not acknowledge the existence of any risks or benefits of additional treatment, which is consistent with previous studies of this population.[36] This is likely reflective of differing participant coping and communication styles. While some participants may want to digest all the details and treatment options for their recurrent HNC, others may only want to deal with the immediate next step. Because recurrent HNC is often fatal, participants may also have differing wishes as to how much detail they want to know about their prognosis. This type of reaction has also been demonstrated in other oncology populations during treatment decision-making.[37]
Fewer than half of participants indicated their treatment decision was based on having no other options or the type of treatment available. This may be explained by the timing of the study interview as participants had, in most cases, just met with their physician to discuss treatment options.
Family support was the most commonly cited reason for pursuing treatment. Patients who had family support or were using their family as a reason to pursue treatment seemed to have a determined reaction to the diagnosis, if only to have a reason to keep going. Having a support network encouraged them to pursue treatment even in the face of high treatment-related morbidity. This is consistent with findings from other oncology populations which show family and other social support structures to be highly motivating.[38]
Symptom burden and money issues were important treatment decision-making factors for less than half of patients. This was surprising given the potential for high treatment morbidity as well as financial toxicity. At the time of interview, however, patients were likely more focused on the immediate goal of survival, and future issues that may or may not occur may not have taken precedence as part of their decision-making.[17,20,39,40]
4.2). Strengths and Limitations
Strengths
Strengths include a relatively large number of interviews to ensure data saturation and analyst consensus.
Limitations
Several limitations, however, include conducting only one interview with each participant, lack of member checking, heterogeneity of the sample in both tumor location and previous treatment received, and lack of generalizability to patients not treated for recurrence at a comprehensive cancer center. Our understanding of differences between those who did and did not completed the study is limited by only having demographic and disease/treatment data from seven individuals not completing the study. Further limiting, is the lack of primary disease stage information on the majority of participants. Another important limitation is the potential for varying interpretation of the interview questions by participants. For example, one question in the interview guide: “Have you decided what you want to do?” was intended to query treatment decision, but by not asking that question explicitly, participants may have held varying interpretations of what was being asked. A final limitation was not querying the impact of previous recurrence on the decision-making process; as some participants had experienced a previous HNC recurrence at the time of study enrollment, their priorities and preference may have differed from patients experiencing their first recurrence.
4.3). Clinical Implications
It is essential that clinicians identify patient priorities at the time of a recurrent HNC diagnosis while also respecting patient coping and communication styles. This may be challenging in an environment that understandably prioritizes the pursuit of survival. Because many patients with recurrent HNC will ultimately die from their disease, with or without treatment, it is critical for healthcare workers at every level to listen to what patients are saying, and not saying, during treatment decision making conversations. Furthermore, timely, effective communication among clinicians is imperative due to the multidisciplinary teams that care for patients with recurrent HNC. It is also important that clinicians ask patients what kind of information will best help them make a treatment decision. A simple checklist that allows patients to identify their top priorities may also assist clinicians in navigating these conversations. Future research that focuses on sub groups of patients with similar primary HNC experiences in regards to disease location and treatment may also illuminate common themes that lead to tailored approaches for considering treatment of recurrent disease. The development of tailored communication and decision aids may be beneficial for not only the patients in this population, but also the clinicians guiding these conversations.
Supplementary Material
Acknowledgements
We thank Dr. Barbara Murphy for her help in developing the interview guide. We thank Drs. Jill Gilbert, Kyle Mannion, Barbara Murphy, James Netterville, Ken Niermann, and Sarah Rohde for making their clinics available for participant recruitment. We would also like acknowledge research assistants, Natalie Paul and Elizabeth Charron for their work on this study.
Funding: This study was supported by the Agency for Healthcare Research and Quality (1K12HS022990-01) and National Center for Advancing Translational Sciences UL1 TR000445
Research Involving Human Participants: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (Vanderbilt University Institutional Review Board #141575) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
Footnotes
Publisher's Disclaimer: This Author Accepted Manuscript is a PDF file of a an unedited peer-reviewed manuscript that has been accepted for publication but has not been copyedited or corrected. The official version of record that is published in the journal is kept up to date and so may therefore differ from this version.
Conflicts of Interest: The authors have no conflicts of interest to disclose.
Informed consent: Informed consent was obtained from all individual participants included in the study.
Data Availability Statement: The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
Conflict of Interest: All authors declare they have no conflict of interest.
References
- [1].Global Burden of Disease Cancer Collaboration. Global, regional, and national cancer incidence, mortality, years of life lost, years lived with disability, and disability-adjusted life-years for 32 cancer groups, 1990 to 2015: a systematic analysis for the global burden of disease study. JAMA Oncology. 2017;3(4):524–548. doi: 10.1001/jamaoncol.2016.5688. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [2].Denaro N, Merlano MC, Russi EG. Follow-up in head and neck cancer: Do more does it mean do better? A systematic review and our proposal based on our experience. Clinical and Experimental Otorhinolaryngology. 2016;9(4):287–297. doi: 10.21053/ceo.2015.00976. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [3].Marur S, Forastiere AA. Head and neck squamous cell carcinoma: update on epidemiology, diagnosis, and treatment. Mayo Clinic proceedings. 2016;91(3):386–396. doi: 10.1016/j.mayocp.2015.12.017. [DOI] [PubMed] [Google Scholar]
- [4].Rhoten BA, Murphy B, Ridner SH. Body image in patients with head and neck cancer: a review of the literature. Oral oncology. 2013;49(8):753–760. doi: 10.1016/j.oraloncology.2013.04.005. [DOI] [PubMed] [Google Scholar]
- [5].Ichikura K, Yamashita A, Sugimoto T, Kishimoto S, Matsushima E. Persistence of psychological distress and correlated factors among patients with head and neck cancer--CORRIGENDUM. Palliative & supportive care. 2016;14(1):86–88. doi: 10.1017/S147895151500084X. [DOI] [PubMed] [Google Scholar]
- [6].Brockstein B, Haraf DJ, Rademaker AW, et al. Patterns of failure, prognostic factors and survival in locoregionally advanced head and neck cancer treated with concomitant chemoradiotherapy: a 9-year, 337-patient, multi-institutional experience. Annals of Oncology. 2004;15(8):1179–1186. doi: 10.1093/annonc/mdh308. [DOI] [PubMed] [Google Scholar]
- [7].Pignon JP, le Maitre A, Maillard E, Bourhis J. Meta-analysis of chemotherapy in head and neck cancer (MACH-NC): an update on 93 randomised trials and 17,346 patients. Radiotherapy and oncology : journal of the European Society for Therapeutic Radiology and Oncology. 2009;92(1):4–14. doi: 10.1016/j.radonc.2009.04.014. [DOI] [PubMed] [Google Scholar]
- [8].List MA, Stracks J, Colangelo L, Butler P, Ganzenko N, Lundy D, Sullivan P, Haraf D, Kies M, Goodwin W and Vokes EE, 2000. How do head and neck cancer patients prioritize treatment outcomes before initiating treatment?. Journal of Clinical Oncology, 18(4), pp.877–877. [DOI] [PubMed] [Google Scholar]
- [9].List MA, Rutherford JL, Stracks J, Pauloski BR, Logemann JA, Lundy D, Sullivan P, Goodwin W, Kies M and Vokes EE, 2004. Prioritizing treatment outcomes: head and neck cancer patients versus nonpatients. Head & Neck: Journal for the Sciences and Specialties of the Head and Neck, 26(2), pp.163–170. [DOI] [PubMed] [Google Scholar]
- [10].Tschiesner U, Sabariego C, Linseisen E, Becker S, Stier-Jarmer M, Cieza A and Harreus U, 2013. Priorities of head and neck cancer patients: a patient survey based on the brief ICF core set for HNC. European Archives of Oto-rhino-laryngology, 270(12), pp.3133–3142. [DOI] [PubMed] [Google Scholar]
- [11].Goodwin WJ Jr. Salvage surgery for patients with recurrent squamous cell carcinoma of the upper aerodigestive tract: When do the ends justify the means? Laryngoscope. 2000;110(3 Pt 2 Suppl 93):1–18. doi: 10.1097/00005537-200003001-00001. [DOI] [PubMed] [Google Scholar]
- [12].Agra IM, Carvalho AL, Pontes E, et al. Postoperative complications after en bloc salvage surgery for head and neck cancer. Archives of Otolaryngology - Head and Neck Surgery. 2003;129(12):1317–1321. doi: 10.1001/archotol.129.12.1317. [DOI] [PubMed] [Google Scholar]
- [13].Nilsen ML, Johnson JT. Potential for low-value palliative care of patients with recurrent head and neck cancer. The Lancet Oncology. 2017;18(5):e284–e289. doi: 10.1016/s1470-2045(17)30260-7. [DOI] [PubMed] [Google Scholar]
- [14].Mehanna H, Kong A, Ahmed SK. Recurrent head and neck cancer: United Kingdom National Multidisciplinary Guidelines. The Journal of laryngology and otology. 2016;130(S2):S181–s190. doi: 10.1017/s002221511600061x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [15].Brockstein B, Vokes E. Treatment of metastatic and recurrent head and neck cancer. UpToDate Web site. https://www.uptodate.com/contents/treatment-of-metastatic-and-recurrent-head-and-neck-cancer. Published 2013. Accessed May 29, 2018.
- [16].Milano MT, Chmura SJ, Haraf DJ, Banuchi V, Kraus D, Fried MP. Treatment of locally recurrent squamous cell carcinoma of the head and neck. UptoDate. 2018. https://www.uptodate.com/contents/treatment-of-locally-recurrent-squamous-cell-carcinoma-of-the-head-and-neck. Accessed March 27, 2019.
- [17].Sciubba JJ. End of life considerations in the head and neck cancer patient. Oral oncology. 2009;45(4–5):431–434. doi: 10.1016/j.oraloncology.2008.06.001. [DOI] [PubMed] [Google Scholar]
- [18].Graner KM, Rolim GS, Moraes ABA, et al. Feelings, perceptions, and expectations of patients during the process of oral cancer diagnosis. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2016;24(5):2323–2332. doi: 10.1007/s00520-015-3030-0. [DOI] [PubMed] [Google Scholar]
- [19].Rogers SN, Hogg ES, Cheung WK, et al. ‘What will I be like’ after my diagnosis of head and neck cancer? European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery. 2015;272(9):2463–2472. doi: 10.1007/s00405-014-3189-x. [DOI] [PubMed] [Google Scholar]
- [20].O’Sullivan EM, Higginson IJ. ‘I’ll continue as long as I can, and die when I can’t help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC). BMJ supportive & palliative care. 2016;6(1):43–51. doi: 10.1136/bmjspcare-2014-000664. [DOI] [PubMed] [Google Scholar]
- [21].Hamilton DW, Heaven B, Thomson RG, Wilson JA, Exley C. Multidisciplinary team decision-making in cancer and the absent patient: a qualitative study. BMJ open. 2016;6(7):e012559. doi: 10.1136/bmjopen-2016-012559. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [22].Morris LG, Chandramohan R, West L, et al. The molecular landscape of recurrent and metastatic head and neck cancers: insights from a precision oncology sequencing platform. JAMA Oncol. 2016. doi: 10.1001/jamaoncol.2016.1790. [DOI] [PMC free article] [PubMed]
- [23].Ho AS, Kraus DH, Ganly I, Lee NY, Shah JP, Morris LG. Decision making in the management of recurrent head and neck cancer. Head & neck. 2014;36(1):144–151. doi: 10.1002/hed.23227. [DOI] [PubMed] [Google Scholar]
- [24].Kim H, Sefcik JS, Bradway C. Characteristics of Qualitative Descriptive Studies: A Systematic Review. Res Nurs Health. 2017;40(1):23–42. doi: 10.1002/nur.21768. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [25].Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. International journal for quality in health care : journal of the International Society for Quality in Health Care. 2007;19(6):349–357. doi: 10.1093/intqhc/mzm042. [DOI] [PubMed] [Google Scholar]
- [26].Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics. 2009;42(2):377–381. doi: 10.1016/j.jbi.2008.08.010. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [27].Dedoose [computer program]. Version 4.5, web application for managing, analyzing, and presenting qualitative and mixed method research data. (2013). Los Angeles, CA: SocioCultural Research Consultants, LLC (SCRC) https://www.dedoose.com/. [Google Scholar]
- [28].Bahl A, Oinam A, Elangovan A, et al. Evaluation of reirradiation in locally advanced head and neck cancers: toxicity and early clinical outcomes. Journal of Oncology. 2018;2018:8183694. doi: 10.1155/2018/8183694. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [29].Pêtre A, Dalban C, Karabajakian A, et al. Carboplatin in combination with weekly Paclitaxel as first-line therapy in patients with recurrent/metastatic head and neck squamous cell carcinoma unfit to EXTREME schedule. Oncotarget. 2018;9(31):22038–22046. doi: 10.18632/oncotarget.25157. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [30].Puts MT, Tapscott B, Fitch M, et al. A systematic review of factors influencing older adults’ decision to accept or decline cancer treatment. Cancer treatment reviews. 2015;41(2):197–215. doi: 10.1016/j.ctrv.2014.12.010. [DOI] [PubMed] [Google Scholar]
- [31].Cranley NM, Curbow B, George TJ, Jr., Christie J. Influential factors on treatment decision making among patients with colorectal cancer: a scoping review. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2017;25(9):2943–2951. doi: 10.1007/s00520-017-3763-z. [DOI] [PubMed] [Google Scholar]
- [32].Orom H, Underwood W 3rd, Cheng Z, Homish DL, Scott I. Relationships as medicine: quality of the physician-patient relationship determines physician influence on treatment recommendation adherence. Health services research. 2018;53(1):580–596. doi: 10.1111/1475-6773.12629. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [33].Easley J, Miedema B, Carroll JC, et al. Coordination of cancer care between family physicians and cancer specialists: importance of communication. Can Fam Physician. 2016;62(10):e608–e615. Published 2016/10/16. [PMC free article] [PubMed] [Google Scholar]
- [34].Berardi R, Ballatore Z, Bacelli W, et al. Patient and caregiver needs in oncology. An Italian survey. Tumori. 2015;101(6):621–625. doi: 10.5301/tj.5000362. [DOI] [PubMed] [Google Scholar]
- [35].Windon MJ, D’Souza G, Faraji F, et al. Priorities, concerns, and regret among patients with head and neck cancer. Cancer. 2019. doi: 10.1002/cncr.31920. [DOI] [PMC free article] [PubMed]
- [36].Roscoe LA, Tullis JA, Reich RR, McCaffrey JC. Beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life. Health communication. 2013;28(2):183–192. doi: 10.1080/10410236.2012.666957. [DOI] [PubMed] [Google Scholar]
- [37].Reaby LL. The quality and coping patterns of women’s decision-making regarding breast cancer surgery. Psycho-oncology. 1998;7(3):252–262. doi:. [DOI] [PubMed] [Google Scholar]
- [38].Reamer E, Yang F, Holmes-Rovner M, Liu J, Xu J. Influence of men’s personality and social support on treatment decision-making for localized prostate cancer. BioMed Research International. 2017;2017:1467056. doi: 10.1155/2017/1467056. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [39].van der Linden N, Buter J, Pescott CP, et al. Treatments and costs for recurrent and/or metastatic squamous cell carcinoma of the head and neck in the Netherlands. European archives of oto-rhino-laryngology : official journal of the European Federation of Oto-Rhino-Laryngological Societies (EUFOS) : affiliated with the German Society for Oto-Rhino-Laryngology - Head and Neck Surgery. 2016;273(2):455–464. doi: 10.1007/s00405-015-3495-y. [DOI] [PMC free article] [PubMed] [Google Scholar]
- [40].de Souza JA, Kung S, O’Connor J, Yap BJ. Determinants of patient-centered financial stress in patients with locally advanced head and neck cancer. J Oncol Pract. 2017;13(4):e310–e318. doi: 10.1200/jop.2016.016337. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.