Head and Neck Cancer Survivorship from the Patient Perspective

Abstract

Background:

Survivorship is a critical part of head and neck cancer (HNC) care. In order to design better processes, we assessed care provided to long-term HNC survivors and their priorities for ongoing care.

Methods:

A survey was provided to head and neck cancer survivors at clinic appointments, including our HNC survivorship clinic. Questions focused on priorities for care in the otolaryngology clinic, types of care provided, and opioid use.

Results:

Of 168 respondents, the most common priority for survivors was surveillance for recurrence (first priority in 75%), with general health the next most common (8%). Few respondents reported active primary care involvement in survivorship. About 10% of patients reported current opioid use.

Conclusion:

Survivors face a large burden of symptoms and deficits, but our data show that most survivors focus on recurrence. Few survivors reported recall of survivorship care plan delivery or discussing cancer care needs with primary care providers.

Introduction

Cancer survivors in the US are projected to number 22.1 million by 2030,¹ and the importance of attending to the physical, psychological, and social needs of this population is increasingly recognized. Strides have been made in both clinical care and research directed toward improving the life-long period after active cancer treatment highlighted by Fitzhugh Mullan in 1985² and foregrounded in the Institute of Medicine’s 2006 monograph From Cancer Patient to Cancer Survivor: Lost in Transition.³ Yet while several groups have provided guidelines for head and neck survivorship care,^4,5 questions remain about what to do for survivors, how best to tailor care, and how to implement the chosen interventions within available systems of care.⁶

Clinical decisions about survivorship care can have consequences as important as those made during the diagnostic and therapeutic phases of cancer care. As survivorship care increasingly is implemented as part of the cancer care continuum, it is critical to include patient perspectives on care delivery and its alignment with their values and priorities. We investigated head and neck cancer (HNC) survivors’ attitudes toward the survivorship care they received through our department’s clinics. In doing so, we extend prior work that has focused on identifying unmet patient needs^7–9 by examining how those needs are met. Specifically, we sought to identify how survivors’ felt their anticipated needs were addressed through ongoing follow-up care. We focused on survivors’ perceptions of the optimal setting for survivorship care, between survivorship clinic, head and neck physician clinic, or primary care clinic. We also sought to characterize the types of care provided to survivors long after their cancer treatment had ended.

Methods

This study was approved by the University of Iowa Institutional Review Board. To be eligible, subjects had to have a history of a cancer of the upper aerodigestive tract, salivary gland, or head and neck skin and at least 18 months since their last head and neck cancer-directed treatment. We included subjects with any malignant histologic type, treatment history, and recurrence history. We excluded patients with known active recurrence or second primary in the head and neck within the prior 18 months, but included patients with active cancer at other sites. We attempted to approach all eligible patients attending scheduled clinic visits and informed consent was obtained. An English-language survey was provided on paper or electronic tablet, and respondents had the option of having the questions read and answers recorded by research personnel (N.K.). Subjects were approached before or after their visit with the clinician depending on the clinic work flow.

Long term follow up care of most head and neck cancer patients treated at the University of Iowa is conducted in the Department of Otolaryngology – Head and Neck Surgery. The department started a dedicated HNC survivorship clinic in 2011, to which patients were eligible for referral by any member of the multidisciplinary head and neck cancer team starting 2 years after completion of cancer-directed treatment. Referrals to the survivorship clinic were made at the discretion of treating physicians, so that some long-term survivors were followed in surgeons’ clinics. This study included patients attending the survivorship clinic as well as those attending a clinic of one of the five head and neck surgeons at our institution. Our department implemented delivery of survivorship care plans shortly after the survivorship clinic began. Care plans are delivered during a clinic visit shortly after treatment is complete.

In the absence of a validated instrument to specifically evaluate survivor experiences and desires, a survey instrument was constructed based on considerations deriving from survivorship literature and the experience of the investigators (Figure 1).^4,10,11 Themes of the survey included patient priorities for survivorship care, understanding of prognosis, involvement of primary care providers in survivorship care, and satisfaction with care. Respondents were asked about the site of their prior cancer and their demographic information.

Figure 1:

Survey provided to study participants.

Small numbers of survivors chose “worry about another cancer or recurrence” and “improving your function (speaking, eating, chewing),” and we chose to combine those groups with “looking for recurrence of cancer” and “help with symptoms from cancer or treatment,” respectively, because of the concordance in the ideas behind those priorities.

All collected data were maintained in REDCap. Descriptive statistical analysis was performed on survey responses. All data analysis was performed using SAS 9.4 (SAS Institute, Cary, NC).

Results

There were 168 respondents, of whom 25.6% were identified in the survivorship clinic and the remainder in surgeons’ clinics. Characteristics of the cohort appear in Table 1. Thirty-six percent reported high school diploma or less and the same proportion reported college degree or greater. Of the patients that reported their county of residence, 23.5% reported a rural county. About one-third of the cohort was more than 5 years out from their last head and neck cancer treatment. Respondents reported a wide range of cancer primary sites including skin and salivary glands. Most respondents received their survivorship care exclusively in an Otolaryngology clinic, with about 20% also still in follow up with a radiation oncologist and 13% with a medical oncologist either inside or outside our institution.

Table 1:

Characteristics of the cohort (n=168)

Factor		No. of participants	%
Age	Under 65	69	41.3
	65 and over	98	58.7
Female sex		59	35.0
Clinic	Surgeon	125	74.4
	Survivorship	43	25.6
Education	Some high school	7	4.2
	High school graduate	54	32.5
	Some college	45	27.1
	College graduate	37	22.3
	Postgraduate	23	13.9
Rural county of residence		38	23.5
Primary site	Mouth	76	45.2
	Throat	60	35.7
	Larynx	22	13.1
	Skin	9	5.4
	Salivary gland	14	8.3
	Other	18	10.7
Multiple primaries		28	16.7
Years since treatment	1.5 to <3	81	48.8
	3 to <5	32	19.3
	5 or more	53	31.9

By far, the most common reported first priority for follow up care was surveillance for recurrence or addressing worry about recurrence, described by 78.9% as the first priority (Table 2). General health maintenance was the next most common, reported by 8.4% as the first priority. Management of symptoms or functional limitations resulting from cancer or treatment was the third most commonly reported first priority, reported by 7.2%. Among the respondents five or more years out from cancer treatment, considerations of recurrence were relatively less common as first priority (67.3%), and general health maintenance more common (17.3%), than in those less than five years out. The changes in the distribution of first priorities did not differ statistically based on time since treatment (p=0.16). A smaller proportion of respondents age 70 and over reported recurrence as their first priority (71.4%) than those under age 70 (82.6%); the differences in distribution of first priorities was not statistically significantly different based on age group (p=0.54). General health maintenance was also more commonly reported as first priority among patients seen in the survivorship clinic (16.3%) than those seen in surgeons’ clinics (5.7%), but this difference in distribution of priorities was not statistically significant (p=0.08). Table 3 shows the prevalence of each concern in respondents’ top three priorities, with cancer surveillance being the dominant concern.

Table 2:

First priority for follow up care (n=166)

	Number	%
Surveillance for recurrence / worry about recurrence	131	78.9
Symptoms / improving function	12	7.2
Advice about prevention	7	4.2
General health	14	8.4
Other	2	1.2

Table 3:

Among the top three priorities for follow up care (n=166)

	Number	%
Surveillance for recurrence / worry about recurrence	159	95.8
Symptoms / improving function	99	59.6
Advice about prevention	77	46.4
General health	90	54.2
Other	2	1.2

A large majority of respondents (91.7%) reported being “very satisfied” with their knowledge of their prognosis, with another 6.6% answering “somewhat satisfied.” All but 2 respondents reported the level of discussion regarding prognosis as being “just right.” When asked how much they discussed their cancer follow up needs with their primary care provider, 34 respondents (20.2%) answered “a lot.” Thirteen percent of respondents reported either no discussion of cancer follow up with their primary care provider, 64% reported “a little,” and another 3% reported not having a primary care provider. Receipt of a survivorship care plan was reported by 28.0% of respondents, with 41.7% being uncertain about whether they had received a care plan or not. Patients who were 1.5 to 3 years out from cancer treatment were most likely to report receiving a care plan, while those 3-5 years out were least likely (Table 4).

Table 4:

Recall of survivorship care plan receipt

Years since treatment	Yes	No	Unsure
1.5 to 3 years	27 (33.3%)	26 (32.1%)	28 (34.6%)
3-4 years	6 (18.8%)	5 (15.6%)	21 (65.6%)
5 or more years	14 (26.4%)	18 (34.0%)	21 (39.6%)

We asked if respondents had engaged in health maintenance activities both related and unrelated to their cancer history. Just over 40% reported having had a CT scan to identify lung lesions. Nearly three-fourths reported having had thyroid function tests, and 76.8% had visited a dentist. The proportion who had seen a physical therapist was 29.2%, and 25.6% had seen a dietician. Half of respondents had had a colonoscopy. Ten respondents (6.1%) had engaged in a smoking cessation program.

Survey data on opioid use are shown in Table 5. Ten percent of respondents reported current use of opioid medications, including 15% of patients reporting a history of throat cancer and 6.7% of patients with history of oral cancer. Survivors residing in rural counties were more likely to use opioids than those in more urban areas (16.2% vs 8.1%). Survivors 3-4 years out from treatment were most likely to currently take opioids (18.8%); those under age 65 were more likely (13.0%) than those 65 and older (8.3%); increasing educational attainment was associated with lower levels of opioid use (13.3% of those with high school diploma or less vs 5% of college graduates). These differences were not statistically significant.

Table 5:

Reported opioid use among respondents (n=167)

		No. using opioids/No. at risk (%)	p-value
Residence			0.21
	Rural	6/37 (16.2)
	Urban	10/124 (8.1)
Years since treatment			0.21
	1.5 to 3	7/81 (8.6)
	4 to 5	6/32 (18.8)
	More than 5	4/52 (7.7)
Sex			0.69
	Male	11/109 (10.1)
	Female	7/58 (12.1)
Age			0.32
	Under 65	9/69 (13.0)
	65+	8/97 (8.3)
Educational attainment			0.63
	High school or less	8/60 (13.3)
	Some college / college grad	7/82 (8.5)
	Graduate school	2/23 (8.7)

Respondents followed in the survivorship clinic and in a surgeon’s clinic were in general pleased with their care: 97.6% were “very satisfied” with their care, and 93.3% were “very satisfied” with their access to clinic resources. These proportions were the same in both the surgeon clinic group (97.6% overall and 93.6% access to resources) and the survivorship clinic group (97.6% overall and 92.5% access to resources).

Discussion

As survivorship care increasingly is integrated as a distinct phase of cancer care delivery, there is an imperative to evaluate its implementation to both improve care and build an evidence base of effective delivery design. The data presented here regarding HNC survivors’ perspectives and priorities provide information useful when designing, implementing, or improving survivorship care programs. Results point to important ways in which survivors’ priorities differ from those that might be proposed by clinicians.

Survivors’ most prominent priority for their follow-up care was cancer surveillance, rather than on management of tumor- or treatment-related quality of life factors. They did not report high levels of primary care physician involvement in their survivorship care. This emphasis on surveillance, and on managing fear of recurrence, hews closer to Mullan’s view of survivorship as being situated between cure and death² than to the view that recurrences are statistically unlikely after several years so that ongoing care should be focused on long-term effects on function and quality of life. Even 5 years after treatment, our respondents maintained focus on recurrence, with little acknowledgment of the possibility that survivorship care might target general health, persistent symptoms, or cancer prevention. This is concordant with the findings of Giuliani et al.,⁷ and with our group’s prior work showing that patients do not distinguish between surveillance for recurrence and evaluation for second primary in the way clinicians do.¹²

We asked survivors if they were satisfied with their understanding of their prognosis, a question not covered well in the survivorship literature. Giuliani et al.⁷ identified informational needs as among the most common unmet needs in their study of HNC survivors. Building on the understanding of that need, the question of prognosis attempted to evaluate the extent to which patients’ felt their expectations for post-treatment life were managed. The large majority of respondents reported being “very satisfied” with their knowledge of their prognosis, with only 8% being “somewhat satisfied” or less. However, only 2 patients reported having had insufficient discussion about their prognosis. This is a complex issue, with the survey data possibly indicating that the small number of patients who wished to have more information did not believe they could obtain it by additional discussion. From a clinician’s perspective, there are some patients with multiple primary cancers or substantial competing comorbidities for whom clear information about survival prognosis is inaccessible. Even for patients without competing risk factors for mortality, it is often difficult to communicate population- or study-based statistical outcomes to individual patients in a meaningful way.

Fully 15% of respondents reported no role of a primary care provider in their cancer follow up. Most survivors within that group reported having a primary care provider but not discussing cancer follow up with that provider. This finding has implications for the success of survivorship guidelines that give primary care providers the central role in head and neck survivorship care. While members of our cohort may have conducted important survivorship-related health maintenance activities through their primary care provider, like evaluation for hypothyroidism or assessment of musculoskeletal symptoms, the survivors did not often see their primary care as part of the cancer-care team. That finding complements those of Berkowitz et al.,¹³ who reported low levels of confidence conducting surveillance for recurrence and second primary cancers and managing long-term side effects of HNC treatment.

We found low levels of familiarity with survivorship care plans. We found that 28% recalled receiving a care plan, including 33% of the most recently diagnosed patients. Our clinic’s survivorship program began delivering care plans shortly after treatment completion in 2011 and by 2017 was reaching about 50% of all HNC patients treated at our institution. Our findings differ from those reported by Campbell et al,¹⁴ whose 2012 survey study found that only 2 of 20 patients recalled having received a care plan in the mail three years before. Recall of care plans may have been higher in our population due to our system by which care plans are delivered in person during a clinic visit. The true proportion who benefited from a care plan may actually be more than 28% because respondents may not have recalled the term “survivorship care plan,” even though they may recall the conversation and the information imparted.

The “satisfaction with access” question attempted to address whether patients who transitioned from surgeon clinic to survivorship clinic were disappointed with that arrangement, and the findings indicate they were not. Patients may have more complex thoughts about that topic, involving transition of care or feelings of abandonment, which were not the focus of the current study and might merit further attention. Also worthy of additional study are surgeons’ and other oncologists’ perspectives on ending their relationships with long-standing patients.

As with any study, several issues affect interpretation of our results. We did not have access to respondents’ medical records, instead depending on participants’ self report. Thus, we did not have data on tumor human papillomavirus status. In addition, primary site and time since treatment data may have been less precise, although representative of patients’ understanding, a key factor in survivorship care. Additional details may have emerged had such data been available, which we plan as a topic of subsequent investigation. It is also important to note that these findings about survivors’ priorities relate to those survivors who remained in follow up in the otolaryngology clinic. Survivors who discontinue follow up with our clinic, including those who conduct it elsewhere, may have different priorities. We are currently working to better understand the preferences, needs, and behaviors of survivors who do not continue follow up in our head and neck clinic. Another limitation was that a complete picture of the burdens and realities of survivorship care must include patients’ caregivers. Giuliani et al.¹⁵ reported a large burden of partners’ unmet needs during HNC survivorship.

Despite limitations, our results point to important avenues for further survivorship investigation. Notably, future work should seek to elucidate discrepancies between patient understandings of and priorities for their care and clinical concerns and investigate how those discrepancies might shape survivorship care delivery and patient outcomes.

Conclusion

Survivorship is a complex aspect of cancer care and merits further research. This work focused on understanding survivors and their priorities. Survivors were more focused on recurrence than on general health and function, described modest levels of involvement of primary care providers, and 10% reported current opioid use. These findings are useful in designing and assessing survivorship care delivery systems for HNC patients.