Supportive Care Needs Among Head and Neck Cancer Patients Prior to Oncologic Treatment: A Prospective,Nested Cross-Sectional Qualitative Analysis

Abstract

Objectives:

To qualitatively characterize pretreatment head and neck cancer (HNC) patients’ supportive care (SC) needs, attitudes toward SC, and barriers to SC utilization.

Materials and Methods:

A prospective, nested, bi-institutional, cross-sectional pilot study design was employed. Participants were sub-selected from a representative sample of 50 patients newly diagnosed with mucosal or salivary gland HNC or sarcoma of the head and neck. Eligibility criteria included reporting ≥2 unmet needs (according to the Supportive Care Needs Survey—Short Form 34) or clinically-significant distress (National Comprehensive Cancer Network Distress Thermometer score ≥4). Semi-structured interviews were performed prior to initiation of oncologic treatment. Audio-recorded interviews were transcribed and thematically analyzed using NVivo 12.0 (QSR Australia). Thematic findings and representative quotes were interpreted by the entire research team.

Results:

Twenty-seven patients were interviewed. One-third were treated at the county safety-net hospital and the remainder were treated at the university health system. An equal proportion of patients presented with oral cavity, oropharyngeal, and laryngeal or other tumors. Two significant findings were identified on semi-structured interviews. First, patients did not perceive the relevance of SC prior to treatment. Second, anxiety surrounding the HNC diagnosis and impending treatment dominated in the pretreatment phase.

Conclusion:

Improved HNC patient education about the relevance and importance of SC in the pretreatment setting is needed. Integration of social work or psychological services in HNC clinics is warranted to address patients’ cancer-related worry—a discrete, dominant pretreatment SC need.

Keywords

head and neck cancer supportive care pretreatment patient preferences qualitative analysis

Introduction

Head and neck cancer (HNC) is among the most distressing types of cancer. It disrupts basic daily functions such as speaking, eating, and breathing, and its treatment results in substantial short- and long-term morbidity.^1,2 HNC patients often have supportive care (SC) needs at all stages of illness and recovery that, left unmet, can adversely affect health outcomes and quality of life.³ Some of these needs include physical and social dysfunction, tobacco and alcohol abuse, and psychological distress.^4,5

Despite their high SC needs, HNC patients do not use SC services liberally.^6-8 Reasons for this discrepancy are unclear, particularly given the ample array of SC services at most cancer centers.⁹ Even less is known about pretreatment HNC patient SC needs and use of SC services: most research has focused on survivorship issues after oncology treatment.^10-12 Recent studies suggest that pretreatment HNC patients may require acute informational, psychosocial and prophylactic support as they continue to manage their symptoms or plan complex treatment logistics.^13-15 Attention to the SC needs of HNC patients at this critical phase in survivorship is closely tied to better treatment uptake, and overall improved health and social outcomes.^16,17

In this study, we qualitatively analyzed pretreatment HNC patients’ SC needs along with their knowledge and perspectives about SC and SC services. We also queried them about barriers to use of SC services. An improved understanding of patients’ attitudes toward SC and barriers to uptake of pretreatment SC services might guide the design and development of novel interventions to address this gap in care.

Methods

Setting

Oncologists at the University of Texas Southwestern Medical Center (UTSW), an academic medical center, and Parkland Health & Hospital System (PHHS), a vertically-integrated county safety-net healthcare system, treat approximately 350 new mucosal HNC patients each year.

Recruitment

As described in detail in the accompanying parent study, a consecutive, block recruitment strategy was employed to enroll 50 HNC patients who were representatively distributed according to anatomic subsite and hospital location.¹⁸ Eligible cancer diagnoses included mucosal squamous cell carcinomas of the head and neck, head and neck sarcoma, and malignant salivary neoplasms. Eligible participants were aware of their cancer diagnosis and had completed at least 1 oncology visit. All 50 patients were surveyed using the Supportive Care Needs Survey-Short Form34 [SCNS-SF34] and National Comprehensive Cancer Network (NCCN) Distress Thermometer.

In this study, a subsample of patients reporting 2 or more unmet SC needs, or a NCCN Distress Thermometer score of 4 or more, were invited to participate in semi-structured interviews.

Sampling

We sought a representative sample of HNC patients for interviews and applied a block recruitment strategy according to hospital type and anatomic subsite: university hospital (oropharynx, n = 5; oral cavity, n = 5; other anatomic location, n = 5); county safety-net hospital (oropharynx, n = 3; oral cavity, n = 3; other anatomic location, n = 3).

Data Collection

Two bilingual study team members with qualitative expertise conducted semi-structured interviews with English- and Spanish-speaking HNC patients from 10/2019 to 1/2021. The 30-minute semi-structured interview evaluated unmet needs and barriers to SC utilization, and probed patients’ perceptions and knowledge about SC services, desire to seek SC, and impact of the cancer diagnosis on their lives. All interviews were audio-recorded and transcribed using a professional IRB-approved vendor.

Data Analysis

All transcripts were de-identified and thematically analyzed using NVivo 12.0 (QSR Australia). Using a deductively-driven codebook corresponding to the interview guide, 3 team members met weekly to discuss, jointly code, and refine codebook definitions for the first 30% of transcripts. The codebook was then finalized, and the 3 team members met in separate pairs to double-code the remaining transcripts, meeting weekly to resolve coding discrepancies. Once all transcripts were coded, 1 team member summarized each of the thematically coded reports for collective review and interpretation, identification, and discussion of representative quotes by the research team. Descriptive statistics were performed using STATA16 (College Station, TX). Significance was defined as P < .05 and all P-values were reported as two-sided.

Results

In the parent study, among 173 potentially eligible patients, 161 were called and 129 patients were reached. Among these, 78 were eligible and 50 were interested, enrolled, and surveyed.¹⁸

In this study, we applied the aforementioned subsampling strategy to identify and interview 27 patients with 2 or more unmet supportive care needs or clinically significant distress. Notably, nearly all patients were eligible for interviews, as 98% of patients had 1 unmet need, 82% had greater than 5 unmet needs, and 56% had clinically significant distress. While we only intended to interview 24 patients, we inadvertently oversampled 1 oropharynx and 2 oral cavity patients at UTSW. The semi-structured interviews (n = 27) lasted an average of 27 minutes (range 15-49 minutes).

Among patients who were interviewed (n = 27), 63% were male, 56% were non-Hispanic white, 31% reported a household income less than $25 000 per year, 20% (n = 5/25) were uninsured, 8% (n = 2/25) had Medicaid, 19% were current smokers, 15% were hazardous drinkers, and 29% exhibited moderate depressive symptoms (Table 1). Participants exhibited comparable sociodemographic, tumor, and behavioral characteristics to the parent survey-only cohort (Table 1) with 2 notable exceptions. A higher proportion of interviewed patients had early stage I to II HNC (48%) and HPV-mediated disease (32%) compared to the remaining cohort, respectively (35%, P < .001; 17%, P < .001).

Finding #1: Patients did not perceive the relevance of SC prior to treatment (Table 2; n = 18/27).

Table 1.

Characteristics of Patients Who Were Interviewed Compared to Patients Who Were Not Interviewed.

	Interviewed and surveyed (n = 27)	Surveyed alone (n = 23)	P-value
Sex			.12
Female	10 (37)	4 (17)
Male	17 (63)	19 (83)
Race/Ethnicity			.42
Latinx	3 (11)	4 (17)
African-American	2 (7)	1 (4)
White	15 (56)	16 (70)
Other	7 (26)	2 (9)
Socioeconomic status (n = 46)			.72
Income <$25 000	8 (31)	7 (35)
Income >$25 000	18 (69)	13 (65)
Smoking status			.73
Never	10 (37)	6 (26)
Former	12 (44)	13 (57)
Current	5 (19)	4 (17)
AUDIT-4
Hazardous drinking	4 (15)	9 (39)	.06
No hazardous drinking	23 (85)	14 (61)
PHQ-8 depression (n = 44)			.95
Major depression	7 (29)	6 (30)
No major depression	17 (71)	14 (70)
NCCN distress thermometer			.95
Clinically significant distress	15 (56)	13 (57)
Not clinically significant distress	12 (44)	10 (44)
Healthcare system			.83
UTSW	18 (67)	16 (70)
PHHS	9 (33)	7 (30)
Tumor subsite			.08
Oral cavity	9 (33)	4 (17)
Oropharynx	10 (37)	5 (22)
Larynx/other	8 (30)	14 (61)
Overall clinical stage (AJCC8)			<.001
Stage I-II	13 (48)	8 (35)
Stage III-IV	14 (52)	15 (65)
HPV/P16 positive (n = 25)			<.001
Yes	6 (32)	1 (17)
No	13 (68)	5 (83)
Self-efficacy
Mobility			.24
No problems	17 (63)	18 (78)
Any problems	10 (37)	5 (22)
Self-care			1.00
No problems	25 (93)	22 (95)
Any problems	2 (7)	1 (4)
Activities (n = 49)			.67
No problems	14 (54)	11 (48)
Any problems	12 (46)	12 (52)
Pain or discomfort			.58
No problems	9 (33)	6 (26)
Any problems	18 (67)	17 (74)
Anxiety or depression			.32
No problems	6 (22)	8 (35)
Any problems	21 (78)	15 (65)
Unmet needs			.46
Patients with no unmet needs	0 (0)	1 (4)
Patients with unmet needs	27 (100)	22 (96)
Number of unmet needs
Number of unmet needs per patient; mean (SD)	15 (7.9)	11 (7.8)	.09
Number of moderate to severe unmet needs per patient; mean (SD)	11 (8.7)	8.6 (7.9)	.31

Table 2.

Finding #1: Patients Did Not Perceive the Relevance of Supportive Care Prior to Treatment.

Theme	Illustrative quotes
Timing of supportive care	“. . .I had so many people coming in and talking to me and stuff – and it’s not their fault, it’s mine – that I felt like a deer in headlights just trying to figure out all that was coming into me. And I know that they did talk to me about a few different avenues and stuff. . . . I just didn’t hear it because I was trying to absorb and take as much in as I could while dealing with my thoughts of what’s going on. And that’s been the biggest thing is being able to shut my head off and not think about what’s happening, you know?”
	“Interviewer: . . .when do you think it’s a good time for you to look into these supportive care services?
	Patient: I would say probably once treatment starts. Because right now everything’s in my mind so up in the air, I wouldn’t really know what to really address. . .”
	“Patient: I actually have not looked at them [SC information material]
	Interviewer: You haven’t read them? No problem.
	Patient: I’ve been taking care of a ton of paperwork for my job, for the family leave act and stuff like that. I’m just so busy dealing with all of that that I really haven’t had a chance to sit down and look at all that.”
Supportive care needs cannot be known until cancer treatment starts	“Interviewer: Is there a reason why you haven’t (thought about supportive care)?
	Patient: Well, it’s not really a reality yet. I don’t even have a surgery date . . .It’s not something where it’s like, “I’ve got to plan for – here is when it’s happening.” So, if they were to refer me for services, I can’t tell them, “Well, I need help on such and such date,” because I don’t know. You know what I mean? I can’t tell them yet”
	“It’s not something that like I have an objection to or that I think [supportive care] is not useful. I do think it’s useful. Maybe I’ll feel differently after surgery and it might vary based on what the outcome is or what sort of after effects I have. If I was unable – if the use of my speech is impaired or I’m having more drastic problems, I feel like I would feel very differently about that. But at this point it feels kind of premature to me because I don’t really know where I’m going to be at with that”
	“Interviewer: So would you prefer to know more about supportive care services before surgery or after surgery?
	Patient: After surgery.
	Interviewer: . . .Why would it be better to do it after?
	Patient: Because that way we know the conditions of the end what to look forward to, be prepared after the surgery. Because like I said, the surgery can go several different ways. You can get your hopes up, you can end up buying all the safety stuff and everything, then all of a sudden after surgery, we didn’t go that way, we just did a cleaning and that’s all you needed. So like I said, after surgery would probably fit because that way, you’ll know which way you’re going and what to be prepared for and what to gain from there.”
Supportive care relates to future treatment or recovery	“Patient: I was hoping I could talk to a dietician so I could start getting ready for the recovery process from surgery to radiation.
	Interviewer: Okay. Okay so your main goal in going to the dietician is that recovery process?
	Patient: The recovery process, making sure I’m getting enough vitamins and minerals, making sure I stay as healthy as possible. . . .the dietician was somebody I was looking forward to meeting. That way I have everything ready and I can start prepping for that.”
	“Interviewer: why do you think it’s the best time to discuss supportive care services after surgery?
	Patient: To me, it’s _____ after surgery is when it feels like – okay, you lost a piece of your mouth. You know, you lost a piece of something that you were
	born with. . . Just say, you know, you did the surgery, so I think the support group would be there after surgery, the therapist, you know, after everything has already happened.”
	“Interviewer: . . .and have you scheduled any supportive care services?
	Patient: Not at this moment, no.
	Interviewer: Okay, and which services are you interested in scheduling?
	Patient: It would probably be something like the care after the surgery. . . you can go to a speech therapist or something like that, you’re going to learn how to swallow, and stuff like that.”
	“Interviewer: which services are you interested in scheduling after your treatment?
	Interviewee: the radiation and the chemo transportation service, because I honestly don’t think I’m going to be able to drive back and forth to chemotherapy.”
	“. . .for a patient like me it would be really helpful to me if I had a place where I can gather more information. Or speaking of what you asked about which is circling back supportive resources. . . if there was some information that would specify to you ok, so this is what’s coming next. Here are some things you might want to know about. Do you have any questions? It would be helpful.”
	“Patient: I guess I’d be one of those that would want to know about it after I start treatment.
	Interviewer: After.
	Patient: Mostly what I was interested in to start with is what’s [the program]? What are we doing? What direction are we headed? What the likelihood of a good outcome? And then how to cope with that would come after depending on what that answer is.”

A number of patients (n = 18) felt that it was difficult to think about SC services prior to treatment initiation. Although all but 1 patient confirmed they had received information about SC services, only 6 patients expressed intent to access any of the services prior to initiating treatment. Patients articulated immediate concerns related to alleviating acute symptoms and establishing a treatment plan. They suggested these priorities took precedence over selecting and accessing SC services. Others felt that they needed to start the treatment first in order to identify what support they needed. Six patients said they would not access SC services due to distance from the facility or uncertainty about how to contact services. A majority (n = 21) spoke about being too busy, overwhelmed, or distracted to pay attention to the informational material provided at intake. They were unable to think past the symptom discomfort and preparations for treatment, such as absence from work, arranging finances and family care, and travel and lodging for oncology treatment. Although survey data from the sister study described a modest prevalence of smoking and hazardous drinking in this cohort, only 1 patient reported need for smoking cessation or addiction psychiatry services.

Among those who did wish to access services prior to treatment, patients prioritized services oriented toward managing their acute symptoms or the effects of treatment. Patients engaged in extended conversations about using SC services in the context of preparing for treatment. While 1 patient discussed seeking speech therapy to anticipate dysfunction arising from larynx surgery, another patient had reached out to a dietician to seek guidance on what recipes could help her family care for her during recovery from surgery. Some patients would have appreciated assistance with transportation and lodging for treatment. Others requested easier access to information via MyChart or through peers experiencing similar challenges to help them better navigate the treatment process.

Finding #2: Anxiety surrounding the HNC diagnosis and impending treatment dominated in the pretreatment phase (Table 3; n = 27/27).

Table 3.

Finding #2: Anxiety Surrounding the HNC Diagnosis and Impending Treatment Dominated in the Pretreatment Phase.

Theme	Illustrative quotes
Anxiety about treatment and prognosis	“I’m personally afraid that there’s going to be pain or that something might go wrong in the surgery and there’ll be something unplanned like, ‘Oh, we didn’t know that was there. We had to deal with this thing’.”
	“. . .The only problem I have at this moment is that I want to have the surgery, and that’s it, to leave this behind. And I’m not sure if this will continue or what I can do so the cancer doesn’t spread or to avoid it.
	Interviewer: You’re worried that it could come back.
	Patient: Yes, that they explain to me what I can do and what I can’t do, what to drink, what to eat to avoid the cancer coming back.”
	“I mean I think that generally it’s probably I mean for me or for anybody I think that there’s a little bit of just overwhelming or anxiousness in particular because I’ve never even had general anesthesia before. So a lot of my anxiousness is based on like just that aspect because it doesn’t sound like for example that it would be great to have tongue surgery and then be nauseous. That feels like a horrible time to throw up. So I’m anxious about some of those logistics.”
	“Well, he [doctor] did tell me that he’s just not going to know what he’s going to do or what he’s actually facing until he goes in and removes the tumor, which is fair. But my job is 95 % talking, so I’m very scared, I’m very anxious about what my future looks like as far as being able to speak. He can’t tell me because he just doesn’t know. And I think that that’s probably causing me the most stress right now.”
Worry about finances, lodging and family during treatment	“So my family is going to be flying out for my surgery and probably for the duration of my stay at the hospital to be with my husband and to also – we have animals at home and he’s going to need some help with them so they’re going to help out with that. And then it’s just, unfortunately, it just requires a little bit more money. I think that’s another area that’s affected us and it’s not just us. I think it’s with anybody going through treatment, just a lot of money that we don’t necessarily have. . .”
	“My only thing right now is the housing, having reasonable housing. My only other concern, talking about that, is if I don’t feel like making the trip home, I know a lot of the hotel rates are only good Sunday through Thursday, and that’s a money issue. It’s still kind of a concern of mine.”
	“Patient: . . .the travel back and forth, especially after I’ve done radiation and chemo, I’m concerned that I will not be able to make the drive back home, or I may not feel like the six-and-a-half-hour drive, because not only is it a six-and-a-half-hour drive, that’s six and a half hours one way. If we come home Friday after a treatment, then I have a day to be home and then I’m leaving the next day to go back to Dallas for a treatment on Monday.”
	Participant talking about preparing for treatment “Um, I haven’t told my mom yet. . . Because I don’t know how because this is the third time that I’ve had to tell her, and I don’t want to do it. . .”
Experience of cancer impact informs perceived need for supportive care	“Patient: This is my third primary cancer. . .when I did breast cancer, I went through some- I don’t know what they called it, but it was like a class where you met with other breast cancer . . .and I think that’s really important.
	Interviewer: Oh okay, great. And so I know you mentioned um the support group. Do you plan on joining one?
	Patient: Yeah, I would love to.”
	“Interviewer: . . .you mentioned because you felt like your current diagnosis isn’t as, or is worse.
	Patient: Severe.
	Interviewer: As severe. Correct. . .
	Patient: Correct. I probably would. I think that I would.
	. . .if they get something that’s invasive. Mine was just aggressive, but it’s an isolated tumor. But had it spread to my lymph nodes I would have needed a support group, I would have needed help. Thankfully, yes.”
	“Patient: Dr. [ ] advised me that, in my particular type of cancer, the success rate is about 95 %, so that puts me in a lot better frame of mind than some people are. Some people are going to need more counseling because their prognosis is not as good. . .”
Urgency for psychological assistance	“Patient: Well, I’m going through the psychological part of being diagnosed with cancer and, you know, I can see a need probably to help me um work through that, but I’m not in any desperate state right now, okay?
	Interviewer: So do you feel like personally you’re managing the emotional aspects?. . .
	Patient: Yeah, could it be better? Maybe. Uh, but I’m doing okay.”
	“Interviewer: Are you interested in talking to a mental health provider?
	Patient: I’d like to talk to somebody just to see what kind of avenues I have to help me sleep better and maybe deal it with some of the – I don’t want to say I have panic attacks, but there are times I wake up and it’s kind of like I know I need to go. . .but. . . what’s the hurry?”
Coping	“I know it’s hard for them to know who to talk to and how to talk to people because some people are so overwhelmed by it that they’re just constantly breaking down to tears and everything. I try to deal with everything with humor. It was one of those things that I look at as for the most part, I’ve had a very good healthy life and this is really my first hiccup.”
	“Patient: I’m very blessed to have the family I have _____. My sister, my nephew, my kids, everybody is willing to help and step up wherever they’re needed.
	Interviewer: That’s a big support system. That’s really good to hear.
	Patient: I have a very good support system. I have a very good church family to help with whatever I need, too.”
	“You think it’s unbearable and then, all of a sudden, you reach that level and then it tapers back down to where you can kind of see the light at the end of the tunnel. So, I think if you can just look forward to – I think my program is a 56-day program. I’m just looking forward, just counting the days off from 1 to 56 and taking each day as it comes.”
	“From what I understand, the treatments and everything, the curable rate it’s like 98.6 % and all. And all my blood work that they’ve taken on me over the last month and a half according to the oncologist puts me into a very favorable side . . . So that’s a benefit in my favor.” (Parkland/ P16 + oropharynx/tumor stage IV)

Most patients (n = 26) shared accounts of how their life had been adversely impacted by their HNC diagnosis, particularly as they contemplated their treatment, prognosis, and management of symptoms. These patients expressed anxiety related to receiving a cancer diagnosis (n = 16), such as worry about employment, finances and disability, and their family’s well-being. The expressed SC needs of the patients matched their predominant anxieties in the pretreatment phase. For instance, those most concerned about the cost of treatment spoke about needing help with navigating hospital payment mechanisms, finding close, affordable accommodation through the treatment phase to avoid expensive lodging and commutes, and worry about losing employment as a result of cancer treatment related side-effects. Many patients concerned about their families’ distress through the cancer treatment process wished for support that would ease the burden of care on their families. For instance, some patients expressed desire for reliable transportation to the hospital so their spouse would not have to drive.

While the anxiety related to treatment was the most discussed topic on all 27 interviews (n = 27), patients often spoke simultaneously about how they were coping with their distress and anxiety. A number of patients linked the stress of contemplating surgery with expressed trust in their treatment teams to work toward the best health outcomes. Patients also focused on ways they could stay in the present, taking a “day at a time” approach and staying positive, or seeking support from their social networks. Despite the prevalence of distress and anxiety, most patients did not endorse need for a mental health provider. When asked in the interview about whether they would want to see someone for their psychological needs, the majority of patients felt that it was a good resource but they felt no immediate need for it.

Discussion

Overview

These qualitative findings supplement our survey data¹⁸ to clarify the nature of pretreatment HNC patients’ SC needs and desire for SC services. Although most patients expressed interest in SC services in the parent survey, more in-depth interviews revealed that they largely did not perceive the relevance of SC in the pretreatment phase. Patients were most interested in select SC services which they perceived would facilitate or augment their impending oncology treatment (eg, nutrition, speech therapy). However, they lacked awareness that other available SC services (eg, social work, tobacco treatment program, addiction psychiatry) could also influence treatment and treatment efficacy. Second, the anxiety surrounding the cancer diagnosis, upcoming treatment, and cancer prognosis was the dominant unmet need for pretreatment HNC patients.

Awareness, Relevance, and Timing of Pretreatment SC Services

We found that patients perceived SC services as distinct and separate from oncologic treatment rather than as an integral therapeutic aspect of their cancer recovery journey. Introducing SC information at a time when patients were thinking about impending treatment influenced how much attention and interest they expressed in SC services. Even though patients shared multiple concerns about their cancer diagnosis and treatment initiation, few of them realized how the available SC services could facilitate and ease those concerns. For instance, patients appeared not to recognize that oncology social workers could help problem-solve their transportation and lodging needs to facilitate receipt of treatment. Psychological and emotional support, too, was not given much importance despite patients’ emotional struggles and anxiety over impending treatment. A prior study identified a handful of barriers to distress management including lack of HNC patient awareness that their level of distress was clinically actionable, stigma toward mental health consultation, and practical issues around access to care.¹⁹ Despite the adverse impact of tobacco use and heavy alcohol use on both proximal treatment- and distal oncologic outcomes, only 1 of the interviewed patients expressed intent to seek services treating tobacco use and alcohol abuse. Indeed, many patients seemed satisfied that they were “in the process of quitting” on their own and expressed low urgency to address these particular behaviors. These findings point to gaps in patients’ knowledge and understanding of how SC services can meet their needs in the pretreatment phase.

Our study suggests that addressing patient information and education gaps regarding SC services prior to oncologic treatment will be necessary to improve utilization of SC services. This adds to the very limited literature on barriers to HNC SC service utilization.¹⁹ In our study, while surveyed patients reported a high desire for SC services when presented with a list of available services, narrative accounts paint a complex picture about how patients understood and determined the importance of the SC programing made available to them. Since knowledge is a prerequisite for action, patients need to understand how SC services can facilitate treatment and improved health-related outcomes. Studies point to the paramount importance of informational needs for HNC cancer patients, especially information related to disease, treatment, and side-effect management.^8,20-22 However, none have explored patients’ informational needs in the context of HNC patient use of SC services. Increased utilization of pretreatment SC services will require concerted, contextually-informed research on the information exchange among patients and practitioners and strategies to increase uptake of SC interventions.

Cancer-Related Worry

Cancer-related worry was the predominant, albeit wide-ranging and heterogeneous, SC need among pretreatment HNC patients in our study. This qualitative finding corroborates our survey data: over half of pretreatment patients reported “uncertainty about the future” and “fear of cancer spreading” were at least moderate unmet needs.¹⁸ The breadth of patients’ cancer-related worry was notable and included concerns about practical problems (eg, finances, travel, and lodging for treatment), family problems (eg, anticipated strain on caregivers), uncertainty about the future (eg, fear of a poor prognosis, functional impact of the cancer and treatment, employment), and the anticipation of and anxiety surrounding treatment. Among these worries, pretreatment patients were most preoccupied with the processes involved in obtaining treatment (ie, practical problems) and the idea of treatment itself.

Cancer-related worry has been widely studied, yet remains ill-defined.^23-25 Among cancer survivors, prior investigators have defined this construct as a contributor to and symptom of distress²⁶ along with “future-oriented” and “multidimensional” concerns.²⁵ In addition to involving the highly discussed subtopic of fear of cancer recurrence,²⁷ cancer-related worry is comprised of concerns about family health, financial stability, employment, future treatment, recovery from treatment, dying, and existential concerns (eg, making the most of one’s remaining time).²⁵ From our perspective, the following definition of “worry” effectively captures the experiences of our pretreatment HNC cancer survivors: “mental distress or agitation resulting from concern usually for something impending or anticipated.”²⁸

Cancer-related worry is an established survivorship issue, but has been primarily evaluated in posttreatment cancer patients.^29-33 Several discrete measures have been created to assess cancer-related worry,^25,34 highlighting the prevalence of this problem across survivors of all types of cancers,^29-32 including HNC survivors.²⁵ Less is known about cancer-related worry in pretreatment cancer survivors.³⁵

Our patients’ dominant, universal experience of cancer-related worry suggests this construct should be a primary focus of pretreatment HNC supportive care. Optimally addressing this broad SC need may allow oncologists and patients to prioritize other critical SC needs such as tobacco use, heavy alcohol use, depression, and malnutrition. Oncology clinics may address “practical” cancer-related worries with practical solutions, such as mobilizing patient, family, institutional and community resources to facilitate travel and lodging for treatment. There are many potential interventions to address other cancer-related worries, such as uncertainty about the future and anxiety about treatment. These include maximally informing and educating patients about their cancer and treatment, referral to educational resources, cancer orientation programs, support groups, counseling, relaxation training, mindfulness techniques, music therapy, guided imagery, strengthening coping strategies, fostering resilience, cognitive behavioral therapy, and pharmacotherapy.^3,26,36-43

Practical Implications for Clinical Practice

Although additional validation studies are needed, our analyses suggest that both patient-oriented and provider-oriented interventions will be integral to improved uptake of SC services and management of SC needs. Interventions to inform and educate pretreatment HNC patients about the role and critical importance of SC in pretreatment oncology are warranted. Reframing the purpose of pretreatment SC and activating patients to address their SC needs may also improve their cancer-related worry. To accomplish this, head and neck oncology provider teams must first be made aware of patients’ information gap regarding the role of pretreatment SC. Activated providers will be prepared to describe assessment and management of SC needs as an integral aspect of cancer treatment to patients. Considering its additional potential impact on cancer-related worry,³⁶ we also strongly favor implementation of HNC orientation programing for newly diagnosed patients. This service could partially address both of these crucial gaps in care by systematizing patient education about the role of pretreatment SC and informing patients about the institution, HNC, potential treatment processes, and external resources (eg, support groups)—all of which may reduce cancer-related worry.

Our findings also suggest that social work or psychology services should be integrated into the everyday management of pretreatment HNC patients.⁴⁴ Oncology social workers, for instance, are uniquely trained to manage the spectrum of cancer-related worries described by our patients, from practical problems to anxiety about treatment and fear of the unknown. Their skillset extends well beyond this, as is effectively captured by the following definition of their role: “to assess patient, and family care needs, and provide interventions that help clients work toward solutions that address their physical, internal psychological processes, interpersonal and environmental problems.”⁴⁵ They are well-equipped to link patients with SC services they do not directly offer (eg, tobacco treatment, alcohol abuse, and nutrition) and troubleshoot barriers to receipt of these services with patients.^46-49 Effectiveness research evaluating the impact of social work and psychological services will be needed to improve suboptimal reimbursement for their work.⁵⁰

Limitations

The study is subject to limitations. The project was initiated in 2020 prior to the COVID-19 pandemic, halted for 1 month at its onset, and then resumed. Therefore, the pandemic was not explicitly assessed as part of the study design and its influence on unmet SC needs and receipt of SC services is unclear. Notably, however, the topic of COVID-19 did not arise in patient interviews. Our small sample size also constrains the generalizability of our findings. However, this limitation was tempered by enrollment of diverse participants from high and low-resource health systems. Finally, since nearly the entire sample of patients exhibited at least 2 or more unmet needs, our study design is not a limitation. These qualitative findings are likely to be broadly generalizable to HNC survivors.

Conclusion

This qualitative study augments our sister survey study by identifying 2 novel SC issues affecting pretreatment HNC survivors. Head and neck oncology care teams need to better educate patients about the capacity of SC services to meet their needs and improve their oncologic outcomes prior to oncologic treatment. They also must recognize that cancer-related worry is a discrete, overriding SC need of pretreatment HNC patients. Validation studies and further research evaluating interventions for these unique SC issues are warranted.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: American Cancer Society Institutional Research Grant (IRG# 17-143-13). Eugene P. Frenkel, M.D. Scholar in Clinical Medicine Award.

ORCID iDs

Andrew T. Day

Rebecca L. Eary

Simon Craddock Lee

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