Perceived Symptom Experience in Head and Neck Cancer Patients with Lymphedema

Abstract

Background:

Lymphedema frequently develops as a long-term effect from cancer and/or its treatment, including head and neck cancer (HNC). There is a substantial lack of understanding regarding the symptoms and experiences related to head and neck lymphedema.

Objective:

The objective of this study was to explore HNC patients' experiences of lymphedema, with emphasis on physical findings and associated symptom burden.

Design:

This was a qualitative, descriptive study. A purposive sample of 20 HNC patients who completed lymphedema therapy participated in semistructured, face-to-face interviews. Thematic content analysis was utilized to assess data.

Results:

Participants delineated the time when lymphedema onset presented and the sites of involvement. Most participants first noticed external or internal lymphedema/swelling within three months following either surgery or radiation therapy. Participants described a broad array of concurrent symptoms and functional deficits, including altered sensations, altered functions, neck–shoulder musculoskeletal/skin impairments, and psychosocial symptoms.

Discussion:

HNC patients experienced multiple physical and psychosocial symptoms during the time they experienced lymphedema.

Conclusions:

Clinicians need to inquire about tissue swelling and associated symptoms early in the post-treatment period to initiate lymphedema management strategies in a timely manner and facilitate reduction of long-term symptom burden and functional deficits.

Introduction

As the numbers of head and neck cancer (HNC) survivors have increased, it has become important for clinicians to spend more time and effort identifying and managing the long-term and late effects of cancer therapy.^1–4 One such commonly neglected long-term and late effect in HNC populations is secondary lymphedema.^5–7 Lymphedema is considered a progressive, disfiguring, and incurable, yet manageable, chronic condition.^8,9 It requires individuals to conduct life-long self-management of lymphedema and its associated symptoms. HNC and cancer therapy (surgery and radiation) may interrupt lymphatic structures (e.g., lymph nodes and vessels) and damage surrounding soft tissues, impeding lymph flow and contributing to the development of lymphedema.^8,10,11 In patients with HNC, lymphedema can specifically affect soft tissues of the head and neck area, resulting in swelling and subsequent development of fibrofatty scar tissue.^8,9,12 This lymphedema may result in local effects (e.g., altered sensation, decreased head and neck–specific function, impaired musculoskeletal function), systemic effects due to acute and chronic inflammation, and psychosocial effects due to altered function and cosmesis.^7,13,14 Early identification of lymphedema allows timely initiation of therapy and may prevent or ameliorate late effects.^8,9,15 In addition to lymphedema, HNC patients may experience fibrosis secondary to surgery or radiation.¹⁶ Many HNC patients manifest both phenomena simultaneously.¹⁶

Although a few studies have provided preliminary data regarding symptoms associated with head and neck lymphedema,^17–20 none of them have utilized symptom surveys that were specifically designed to target head and neck lymphedema; thus, these data may underrepresent the symptom burden associated with lymphedema. Qualitative studies are uniquely important for investigators to understand and delineate patients' symptom experiences. Nevertheless, only one qualitative study (n = 10) has explored symptom experiences in HNC patients with lymphedema,¹¹ finding both physical effects and psychosocial impacts of lymphedema. Currently, there are no conceptual or theoretical frameworks that have been tested and validated to understand lymphedema-related symptoms in the population with HNC. Clearly, there is a substantial gap in our knowledge regarding symptom experiences related to head and neck lymphedema. Thus, we conducted face-to-face interviews (parent study) to explore and better understand HNC patients' experiences with lymphedema in several aspects, including symptoms, treatment experiences, and self-care status. The current report aims to describe patients' symptom experiences related to head and neck lymphedema.

Methods

Participants and setting

A qualitative, descriptive study design was used. The study was approved by the institutional review board and scientific review committee at the study site. A purposive sampling method was used. All participants signed written informed consent before initiating any study activities. Individuals were enrolled into the study if they met the following eligibility criteria: (1) >21 years of age; (2) >3 months after HNC treatment; (3) no current evidence of cancer; (4) a history of lymphedema therapy; and (5) ability to provide informed consent.

From July 1, 2014, to February 5, 2015, 38 HNC patients were approached and 22 consented to be in the study. Sixteen participants did not consent due to (1) time constraints (n = 9); (2) travel/distance limitation (n = 3); and (3) no interest (n = 4). Among participants enrolled in the study, two of them were withdrawn by the Principal Investigator (first author) due to recurrence of tumor and inability to complete the study activities due to time constraints. Thus, a final cohort of 20 HNC patients completed all the study activities.

Data collection procedures

After informed consent was obtained, each participant completed a demographic survey. The trained study staff then conducted a physical examination and documented the participants' lymphedema and fibrosis status in the head and neck area. Each participant's HNC disease and treatment information were collected via the chart review. Next, semistructured, face-to-face interviews were conducted with each participant, by one of two trained interviewers using a standardized script, in a private room at the study site. Interviewers were registered nurses in their second year of Master's degree training in nursing science. The interviewers were trained by the Principal Investigator to ensure consistency of interview process and questioning style. Interviews lasting ∼30 minutes were audiorecorded and transcribed verbatim. Protected health information was transcribed as code without identifiable information. All transcriptions were reviewed and checked by another trained study staff member, listened to each recording to ensure accuracy of transcription but was not involved in either interviewing participants or the transcription process. Recruitment of new participants and data collection ended when saturation was reached, that is, the team determined that additional data did not reveal new symptoms.

Measures

Demographic and HNC medical data

Demographic data were obtained from participants. HNC disease and treatment data were collected from chart review.

Interview guide

An interview guide with open-ended semistructured questions was developed to elicit patients' self-reported symptoms, lymphedema treatment experience, and status and need for self-care of lymphedema. The interview guide included 21 questions. For the purpose of this report, we focus on describing participants' symptom experiences of head and neck lymphedema. Therefore, we report the responses to the following two questions that were designed to obtain participants' symptom experiences: “Can you tell me about when you first noted lymphedema/swelling?” and “What symptoms did you have with the lymphedema/tissue swelling?” Additional probe questions were asked to clarify the patient's statement and to ensure that the interviewer fully understood and captured the patient's symptom description.

Data analysis

Statistical analysis of the quantitative data was conducted using SPSS 22.0. Frequency distributions, means, and medians were used to describe participants' characteristics. The interview transcripts were analyzed using conventional content analysis as described by Hsieh and Shannon.²¹ Each participant was assigned a number that was different from the study identification number, so the coding process was blinded. The analyst triangulation method was used. That is, multiple analysts (coders) were involved in the qualitative data analysis. The coders included the first author, one Bachelor's degree-prepared registered nurse, and a Bachelor's degree-prepared research assistant. The following describes the steps used. First, the transcripts were read by the coders to obtain an overall impression of the transcripts. Then, the coders read the transcripts line-by-line, underlined potential key text, and developed codes using the participants' own words whenever possible. Coding discrepancies were reviewed and reconciled during weekly team meetings. Emerging codes were also discussed in these meetings to ensure consensus of all the codes. Analyses were conducted and continued until no new codes emerged from these data. The constant comparison technique was used to find similarities and differences between the codes, forming categories with codes that pertained to possible similar underlying pathophysiological mechanism.¹⁴

Results

Participants' demographic and medical characteristics are summarized in Table 1. All participants completed an interview. The median interview duration was 23 minutes. In four of the interviews, family members/caregivers were also present.

Table 1.

Sample Characteristics

Characteristics	Frequency (%) (n = 20)
Gender
Male	13 (65.0)
Female	7 (35.0)
Race
White	20 (100.0)
Education level
≥12th grade	20 (100.0)
Marital status
Single/windowed/other	3 (15.0)
Married/living with a partner	17 (85.0)
Employment status
Employed	11 (55.0)
Unemployed/other	9 (45.0)
Smoking (any current or past use)
Yes	11 (55.0)
No	9 (45.0)
Drinking alcohol (any current or past use)
Yes	15 (75.0)
No	5 (25.0)
Primary tumor site
Oral cavity	6 (30.0)
Nasopharynx	1 (5.0)
Oropharynx	10 (50.0)
Larynx	1 (5.0)
Salivary gland and other	2 (10.0)
Tumor TNM stage at diagnosis
Stage I	2 (10.0)
Stage II	4 (20.0)
Stage III	2 (10.0)
Stage IV	11 (55.0)
Could not be staged	1 (5.0)
Complete treatment received
Surgery and radiation	2 (10.0)
Surgery and CCR	4 (20.0)
Chemoinduction and CCR	8 (40.0)
Surgery, chemoinduction, and CCR	3 (15.0)
CCR only	3 (15.0)
Characteristic	Median (min, max)
Age (years)	58.7 (42, 75)

CCR, concurrent chemoradiation.

Theme 1: Onset and presence of swelling/lymphedema

We identified four subthemes related to onset and presence of lymphedema: temporal onset swelling/lymphedema, external lymphedema presentation, internal lymphedema presentation, and situational factors (Table 2).

Table 2.

Presence of Swelling/Lymphedema

Themes	Exemplar quotes from participants
External lymphedema presentation	“Uh, I woke up in the morning to shave and go to the bathroom and I looked at myself and uh I had, uh you know, an immense amount of swelling, just kind of all a sudden…But it was very noticeable and um um just a lot of swelling in my face, jaws, and neck. Um my neck all the way down uh mostly my jaws and um. It was very noticeable.” (ID1005)
	“I think it was a couple of months after the treatment was when I noticed I had a lot of swelling, in my neck, primarily in my neck.”(ID1006)
	“Well first, the first thing I noticed was my lips, would swell up real bad and then it started in my face and then down here (neck). It, I wish you could see the pictures of it.” (ID1008)
	“Well one side of my face was bigger than the other, and puffy.”(ID1018)
Internal lymphedema presentation	“Um well, after well surgery I was swollen for quite a long time, and um, I mean swollen big after surgery. Obviously my tongue, everything was swollen. My tongue and my mouth and my neck. Um and so I started lymphedema therapy…” (ID1001)
	“My whole my tongue was very swollen. Um but in back in in, it went to the back of my tongue was. The swelling actually was inside. Down around the back of my throat…” (ID1003)
Situational factors	“You know, that that the swelling um, which was there, you know, every morning um, but by the end of the day it was, you know, more normal. Yeah.” (ID1002)
	“…but once you first wake up in the morning that's when I felt the most swollen.” (ID1013)
	“…Um on warmer days I seem to have a little more swelling.” (ID1003)
	“…any of the salty foods seems to bring it on when I do have a serious uh episode. Even now I'll get em, nowhere near the level I used to have it before, but I can tell when it starts to fill up. So, salty foods and I noticed it with salty foods and when I fly. I fly for a living, I fly almost every week for one and a half to four hours every time. And that's when I'll notice it start to pick up and build up on me.”(ID1019)
	“I wore it (compression garment) a couple of times when I had a really long flight to Alaska, so I was like 7 hours of flying time and 20 hours of travel time. That's when I really noticed it (lymphedema) the first time.” (ID1019)
	“…if I have an infection, then it (lymphedema) it hurts more than it did beforehand…” (ID1001)

Temporal onset swelling/lymphedema

Most participants (n = 14, 70%) first noticed facial or neck swelling/lymphedema within three months following either surgery or radiation therapy, although 10% of participants (n = 2) indicated that they found swelling/lymphedema before HNC treatment. Twenty percent of participants (n = 4) specified that although they did not notice any swelling/lymphedema, it was identified and diagnosed by their healthcare providers.

External lymphedema presentation

The majority of participants (n = 17, 85%) clearly specified anatomical sites involved by swelling/lymphedema in the face and neck region, including eyelids, face (cheek), lips, jaw, under chin, and neck. The exemplar quotations are displayed in Table 2.

Internal lymphedema presentation

Some of them described the experience of internal swelling involving the upper aerodigestive tract, including mouth, tongue, and back of throat. The exemplar quotes are shown in Table 2.

Situational factors

Some of the participants (n = 8, 40%) identified swelling associated with specific temporal patterns or associated with specific activities. Examples include increased swelling in the morning and/or on waking up, in warm temperatures, with high salt intake, while flying, and accompanying infection. The exemplar quotations are presented in Table 2.

Theme 2: symptoms

Participants reported a broad array of symptoms and functional deficits concurrent with lymphedema. Four major subthemes were identified to reveal symptoms: altered sensations, altered functions, neck–shoulder musculoskeletal/skin impairments, and psychosocial symptoms. Specific symptoms under each subtheme are presented in more detail in the following text.

Altered sensations

The majority of participants (n = 13, 65%) described symptoms related to abnormal/altered sensations in lymphedema-affected area(s), including tightness, discomfort, tenderness, numbness, tingling, spasm, pressure, and throbbing. The example quotes from participants are displayed in Table 3.

Table 3.

Symptoms of Lymphedema

Themes	Exemplar quotes from participants
Altered sensations	“…it would feel tight, this side of my face would get real tight…” (ID1004: tightness)
	“…I had a lot of discomfort from it (lymphedema)… it's discomfort more than painful” (ID1010: discomfort)
	“Um well yeah, it was tender yeah” (ID1011: tenderness)
	“The amount of numbness I had and combined with the swelling. It would be more intense, the numbness, because I if I moved my neck and my head very far it would stretch and hurt. So I basically tried not to turn my head or uh lift it or lower it and, to to kind of like keep the numbness from bothering me um.” (ID1003: numbness)
	“In fact I used to have a lot of tingling (in my face and arm) (during having lymphedema) and it's almost all gone now.” (ID1010: tingling)
	“Because my muscle, it is like a, you know, muscle spasm you might have had in your leg or something. It's just, it's that but it's in the neck.” (ID1006: spasm)
	“…(lymphedema) it was uncomfortable, but it wasn't painful. You know, I was still having the pain from the swallowing and stuff like that, from multiple surgeries. So no, it was just very uncomfortable. A lot of pressure.” “…and it seemed to throb. Well I spent a lot of time, I spent most of. I still sleep kind of partially sitting up now. But when I would start to recline that's when I really feel like it will be throbbing.” (ID1019: pressure; throbbing)
Altered functions	“My tongue swelling, it impacted my speech…Um and it impacted my ability to eat, my tongue swelling did.” (ID1001: impaired speech; impaired eating)
	“It was it was swelling, swollen. Uh I mean I'd been having some uh well swallowing problems. I don't know if that's related, or I guess it's related.” (ID1011: difficulty swallowing)
	“One night I woke up because I couldn't breathe. I don't know if it was from the lymphedema or not. I feel like maybe my little flap don't work the way it is supposed to anymore so I've been told. I can tell I get drainage down my throat that didn't used to be there so I got to be careful to watch what goes down my throat, but something clogged up my air pipe…So I don't know if the lymphedema had anything to do with that or not, really” (ID1021: breathing difficulties) “Like when he was laying down like it felt like it was even closing off his throat, like his airway and stuff because he would complain like it was just tight.” (from patient's wife) (ID1021: breathing difficulties)
	“It bothered me more because of the swelling and it felt funny and it would sometimes swell my eyes shut…Not any blurred vision (before), I have that (blurred vision) now. Yeah, it would feel tight, this side of my face would get real tight…” (ID1004: blurred vision)
	“I had like problems opening my mouth. So like, with the swelling and the problems opening my jaw, you know it was a lot of pressure in there.” (ID1013: problems opening mouth)
Neck–shoulder musculoskeletal/skin impairments	“…I could detect a stiffness. I knew something was, it was stiff it felt stiff and swollen. Stiff and swollen was the way it felt.” (1021: stiffness)
	“Uh, not so much pain. Uh, but stiffness, I think stiffness and just lack of mobility. Because that was one of the, you know some of the things they did was, you know, how far can you move your head this way and how far this way. So limited mobility and stiffness, I would say.” (ID1015: limited neck range of motion)
	“It did impact my driving for a very long time. Um I am three years out now…Well because I couldn't twist my head, to look over my shoulder. I couldn't, I couldn't drive like that so.” (ID1003: impaired driving)
	“Swimming, I was a state champion swimmer when I was a kid so swimming is a passion for me. But my range of motion on my stroke is different on my left side, you know when I swim now I go like this.” (ID1009: impaired swimming)
	“It (neck) feels more rubbery.” (ID1021: skin texture change)
	“…my underneath my neck was loose. I guess that was the first time I even noticed there was an issue.” (ID1022: loose skin)
Psychosocial symptoms	“There was just more of an aesthetic thing that bothered me because I'm in sales and didn't want to look like xxx, before he died. Uh so it was I was concerned uh about my appearance and didn't want to look that way and so I immediately called, you know, my doctor and and she set me up to do lymphedema therapy.” (ID1005: altered appearance)
	“Well I I, I didn't want my face to be lopsided like that. So I figured whatever I could do to to manage that.” (ID1018: altered appearance)
	“um you know, there for a long time when I was still feeling puffy on that side. Um first thing I would do when I would get up. I would sit up straight in the bed or I would lay back just depending on whatever. I would try to sit up because I would have to work my neck…Because as soon as I woke up I would look in the mirror and I would go you know I look like I have the mumps over here. I would start trying to work it down and it really does help. I mean, because like, everybody says well your face doesn't look puffy, I mean, but I'm like I can look at it and I can tell that every now and then it is just a little puffy and there is a little scar tissue. I can feel it and I can tell that it's there's a little thing over here but it's scar tissue.” (ID1013: altered appearance)
	“And it would be when you woke up. She would just be, she was like a bee had stung her.” (from patient's friend, ID1008: altered appearance)
	“…every now and then I will look around. People looking at me because I mean you know it has gotten into almost a nervous habit. I just feel like I need to make sure there is nothing there. (ID1013: Negative self-image, anxious feeling)
	“You know the turkey neck or whatever, that loose skin hanging down but um.” (ID1011: Negative self-image)
	“Uh, I woke up in the morning to shave and go to the bathroom and I looked at myself and uh I had, uh you know, an immense amount of swelling, just kind of all a sudden. And um, I was very frightening. But it was very noticeable and um um just a lot of swelling in my face, jaws, and neck. Um my neck all the way down uh mostly my jaws and um. It was very noticeable.” (ID1005: Fear)
	“I mean, I was anxious to get rid of the swelling. I would have jumped off a roof if he told me to. If I thought that was going to make me get, loose that puffiness in my face and neck.” (ID1005: Anxious feeling)
	“…you know it has been that way for over a year…I have grown to accept it. That that is a part of my life.” (ID1004: Acceptance)

Altered functions

Approximately two-thirds (n = 12, 60%) of the participants stated symptoms related to alterations in head and neck–specific functioning, including impaired speech, impaired eating, difficulty swallowing, breathing difficulties (throat “closing off” while sleeping), blurred vision, and problems opening their mouths. The exemplar quotations are presented in Table 3.

Neck–shoulder musculoskeletal/skin impairments

Some of the participants (n = 11, 55%) reported experiencing symptoms related to neck–shoulder musculoskeletal/skin impairments, including stiffness, limited neck and shoulder range of motion, impaired driving, impaired swimming, skin texture change, loose skin, and pain. The example quotations are shown in Table 3.

Of 20 participants, 13 discussed pain related to lymphedema symptom. Among 13 participants, 38% of them (5 out of 13) specified pain in the lymphedema-affect area(s) and 62% of them (8 out of 13) indicated no pain in the lymphedema area(s).

Psychosocial symptoms

Half of the participants (n = 10, 50%) expressed psychosocial symptoms related to lymphedema, including altered appearance, negative self-image, fear, anxiety, and acceptance of swelling as part of life with swelling. Only two participants indicated no altered appearance. The example quotations are displayed in Table 3.

Discussion

This study focused on exploring symptoms experienced by individuals who developed external and/or internal lymphedema following diagnosis and/or treatment of HNC. The findings from this study confirm and expand upon the previous studies that reported symptoms of HNC patients with lymphedema.^7,17,20

Consistent with findings from other reports,^7,11,14 the study identified that swelling was the most common, initial physical finding noticed and described by participants. Similar findings were also reported in individuals with upper or lower extremity lymphedema.^22,23 One of the important findings from this study was that participants were able to delineate the critical characteristics related to swelling. First, participants were able to clearly describe the time of onset of lymphedema-related swelling. The majority of the participants indicated that they developed swelling/lymphedema within three months post-HNC treatment. This finding was somewhat consistent with findings from previous reports describing that lymphedema occurred after HNC therapy.^7,11 Although more studies are warranted to further examine the temporal onset of lymphedema in HNC patients, the finding has indicated the importance of monitoring and evaluating lymphedema, particularly during the acute recovery phase from HNC therapy.

Second, participants were able to describe specific anatomical sites involved with their swelling, reporting both external (e.g., neck) and internal (e.g., back of throat) structures, which confirmed findings from other reports.^6,24 These findings highlight the need for clinicians to be aware of the complexity of clinical indications and manifestations of lymphedema in the HNC population.

Third, participants could identify factors that aggravated lymphedema, including worsening with recumbent posture, temperature extremes, salty food intake, depressurization during flying, and infections. Although many of these factors have not been reported in individuals with head and neck lymphedema, the broader literature has specified similar factors for exacerbating extremity lymphedema, including extreme temperature changes (warmer days), salty food, air travel, and infection.^9,25 These findings indicate potential similarities in underlying mechanisms in lymphedema between the head and neck region and that of the upper or lower extremities. Clearly, more studies are needed to confirm and broaden these interrelationships. Nonetheless, the findings are critically important because they have provided preliminary data for further investigation of potential situational factors and possible risk reduction strategies for head and neck lymphedema.

Many participants described experiencing altered sensations (e.g., tightness, tenderness, and numbness), which corresponded with the findings from studies conducted in HNC patients, as well as several studies conducted in other cancer populations with extremity lymphedema.^11,13,22,26 Although the exact underlying mechanisms of the altered sensations in the lymphedema-affected area are still unknown, several potential pathophysiological processes might contribute to these altered sensations. For instance, (1) lymph fluids accumulated in skin and subcutaneous tissues may trigger an acute and chronic inflammatory process that may activate peripheral nociceptors; (2) static lymph fluids may evoke a host reaction and lead to the pathogenesis of a tissue response to lymphatic dysfunction,^9,12 including inflammation, fat deposition, and fibrotic tissue formation, could subsequently impair the peripheral receptors' function; and/or (3) proliferating lymph fluids may stimulate local and systemic cytokine effects, which might elicit increased/abnormal sensations. These altered sensations may not only cause discomfort for HNC patients, but also interfere with their daily lives. Thus, more studies are needed to better understand the potential mechanisms, duration, intensity, severity, and impact of these altered sensation symptoms in HNC patients with lymphedema.

Participants reported alterations in head and neck–specific functioning (e.g., impaired speech, impaired eating, breathing difficulties). Similar findings have been reported in a few studies conducted in HNC patients with lymphedema.^7,14,17 It is important to note that the altered functions identified in this research are fundamental and vital to HNC patients in performing daily functioning. Thus, it is urgent to assess the altered functions in a timely manner and to minimize their negative impact on HNC patients' overall quality of life.

Although some neck–shoulder musculoskeletal/skin impairments (e.g., stiffness and decreased range of motion) have been reported previously,^14,17 the impact of head and neck lymphedema on driving and swimming has not been reported in the literature. These new findings specify that lymphedema-related neck dysfunction may negatively influence patients' daily or recreational activities. One of the most striking findings in this study was that some participants described no pain in their lymphedema-affected area(s). Studies conducted in other cancer populations with extremity lymphedema have reported inconsistent findings in this area. For instance, some literature has indicated that lymphedema is a painless condition, except when complications have arisen (e.g., neurological involvement or inflammation/infection).⁹ Some studies reported pain as one of the main symptoms in individuals with extremity lymphedema.^23,27 Whether lack of pain is a symptom of head and neck lymphedema needs to be further investigated.

Finally, one previous qualitative study found that there was a large variation regarding how lymphedema-related change in appearance affected HNC patients.¹¹ Our findings mirrored their results, that is, some patients felt that head and neck lymphedema resulted in significant impact on their body image. Some, however, accepted it as a part of their lives. In addition, we identified that some participants experienced fear at the initial onset of lymphedema, although it has not been reported in the literature. It is unknown whether this fear was lymphedema specific or tied in with fears of tumor recurrence. Future studies are needed to determine the underlying causes of this fear. Some patients also expressed their anxious feelings regarding how to resolve lymphedema. Clearly, our findings confirmed and expanded upon the existing understanding of psychosocial impacts of lymphedema in HNC populations. Furthermore, the diverse and expanding range of psychosocial impacts of lymphedema may imply meaningful differences in coping mechanisms and assessment of the effect of lymphedema in their daily lives, as well as indicate the importance of psychological and supportive care interventions in alleviating distress related to lymphedema.

This study has a number of strengths. First, these data were obtained from HNC patients with a diagnosis of lymphedema who had undergone lymphedema therapy. Second, the sample size was determined based on a process of data saturation. Third, some unique findings (e.g., possible situational factors of lymphedema) were identified in this qualitative study, which has described the onset characteristics and symptoms of lymphedema in HNC patients. However, there are also several limitations within this study. First, black and other minority patients were underrepresented in the study. Although white individuals currently have the highest incidence rates of HNC, the mortality rate is highest in black patients.^28,29 Moreover, black patients are reported to have a higher incidence of advanced HNC.^28,29 Therefore, efforts to improve black and other minority population involvement in future studies are critical to better understand the symptom experience of lymphedema in patients with HNC. Traveling to the homes of those with time/transportation constraints might yield a larger and more diverse study group. Second, recall bias may exist because this was not an observed study. Third, the median duration of interviews was 23 minutes. Clearly, research efforts need to be made to extend the interviewing time that would give the participant more time to express his or her experience about HNC-related lymphedema. Fourth, selection bias may exist because those who chose not to participate in the study may have different lymphedema symptom experiences than those who did take part. Fifth, the study only interviewed patients who were treated for lymphedema. There may be a group of patients who are less bothered by their lymphedema and not actively seeking treatment. We, therefore, may miss such individuals with HNC-related lymphedema.

Conclusions

Our study findings indicate that the majority of participants had multiple physical and psychosocial symptoms associated with lymphedema. Clinicians should ask patients about the development of internal and external soft tissue swelling and associated symptoms. This is particularly important in the early post-treatment period when lymphedema is most likely to manifest itself. Patients who develop lymphedema should be referred to a well-qualified therapist for management. Early identification, timely initiation of therapy, and successful management strategies may lead to decreased rates of long-term lymphedema-related symptom burden and functional deficits. Further investigations are needed to replicate and elaborate on the findings from this report.

Footnotes

Acknowledgment

The work was supported by Vanderbilt Office of Clinical and Translational Scientist Development.

Author Disclosure Statement

No competing financial interests exist.

References

Lin

, Massa

, Varvares

: Improved overall survival and mortality in head and neck cancer with adjuvant concurrent chemoradiotherapy in national databases. Head Neck, 2016; 38:208–215.

Chaturvedi

, Engels

, Anderson

, Gillison

: Incidence trends for human papillomavirus-related and -unrelated oral squamous cell carcinomas in the United States. J Clin Oncol, 2008; 26:612–619.

Cmelak

, Li

, Goldwasser

, et al.: Phase II trial of chemoradiation for organ preservation in resectable stage III or IV squamous cell carcinomas of the larynx or oropharynx: Results of Eastern Cooperative Oncology Group Study E2399. J Clin Oncol, 2007; 25:3971–3977.

The Oral Cancer Foundation: Information-support-advocacy-research…and hope, 2014. www.oralcancerfoundation.org (Last accessed November 8, 2014).

Deng

, Ridner

, Murphy

: Lymphedema in patients with head and neck cancer. Oncol Nurs Forum, 2001; 38:E1–E10.

Deng

, Ridner

, Dietrich

, et al.: Prevalence of secondary lymphedema in patients with head and neck cancer. J Pain Symptom Manage, 2012; 43:244–252.

Smith

, Lewin

: Lymphedema management in head and neck cancer. Curr Opin Otolaryngol Head Neck Surg, 2010; 18:153–158.

Földi

, Földi

, Strössenreuther

RHK

, Kubik

(eds.): Földi's Textbook of Lymphology: For Physicians and Lymphedema Therapists, 2nd ed. Muchen, Germany: Mosby, 2006.

Lee

, Bergan

, Rockson

(eds.): Lymphedema: A Concise Compendium of the Theory and Practice. London: Springer, 2011.

10.

Deng

, Ridner

, Dietrich

, et al.: Factors associated with external and internal lymphedema in patients with head-and-neck cancer. Int J Radiat Oncol Biol Phys, 2012; 84:e319–e328.

11.

McGarvey

, Osmotherly

, Hoffman

, et al.: Lymphoedema following treatment for head and neck cancer: Impact on patients, and beliefs of health professionals. Eur J Cancer Care (Engl), 2014; 23:317–327.

12.

Rockson

: The lymphatics and the inflammatory response: Lessons learned from human lymphedema. Lymphat Res Biol, 2013; 11:117–120.

13.

Deng

, Murphy

, Dietrich

, et al.: Differences of symptoms in head and neck cancer patients with and without lymphedema. Support Care Cancer, 2016; 24:1305–1316.

14.

Deng

, Ridner

, Murphy

, et al.: Preliminary development of a lymphedema symptom assessment scale for patients with head and neck cancer. Support Care Cancer, 2012; 20:1911–1918.

15.

Zuther

(ed.): Lymphedema Management: The Comprehensive Guide for Practitioners, 2nd ed. New York: Thieme, 2009.

16.

Deng

, Ridner

, Wells

, et al.: Development and preliminary testing of head and neck cancer related external lymphedema and fibrosis assessment criteria. Eur J Oncol Nurs, 2015; 19:75–80.

17.

Deng

, Murphy

, Dietrich

, et al.: Impact of secondary lymphedema after HNC treatment on symptoms, functional status, and quality of life. Head Neck, 2013; 35:1026–1035.

18.

Bruns

, Buntzel

, Mucke

, et al.: Selenium in the treatment of head and neck lymphedema. Med Princ Pract, 2004; 13:185–190.

19.

Micke

, Bruns

, Mucke

, et al.: Selenium in the treatment of radiation-associated secondary lymphedema. Int J Radiat Oncol Biol Phys, 2003; 56:40–49.

20.

Piso

, Eckardt

, Liebermann

, et al.: Early rehabilitation of head-neck edema after curative surgery for orofacial tumors. Am J Phys Med Rehabil, 2001; 80:261–269.

21.

Hsieh

, Shannon

: Three approaches to qualitative content analysis. Qual Health Res, 2005; 15:1277–1288.

22.

Armer

, Radina

, Porock

, et al.: Predicting breast cancer-related lymphedema using self-reported symptoms. Nurs Res, 2003; 52:370–379.

23.

Ridner

, Deng

, Fu

, et al.: Symptom burden and infection occurrence among individuals with extremity lymphedema. Lymphology, 2012; 45:113–123.

24.

Murphy

, Ridner

: Late effect laryngeal oedema/lymphoedema. J Lymphoedema, 2010; 5:92–93.

25.

NLN Medical Advisory Committee: Position Statement of the National Lymphedema Network, Topic: Lymphedema Risk Reduction Practices, 2012. www.lymphnet.org/pdfDocs/nlnriskreduction.pdf (Last accessed August 25, 2015).

26.

Salani

, Preston

, Hade

, et al.: Swelling among women who need education about leg lymphedema: A descriptive study of lymphedema in women undergoing surgery for endometrial cancer. Int J Gynecol Cancer, 2014; 24:1507–1512.

27.

Taghian

, Miller

, Jammallo

, et al.: Lymphedema following breast cancer treatment and impact on quality of life: A review. Crit Rev Oncol Hematol, 2014; 92:227–234.

28.

National Cancer Institute and National Institutes of Health: A Snapshot of Head and Neck Cancer: Incidence and Mortality, 2014. www.cancer.gov/researchandfunding/snapshots/headandneck (Last accessed December 22, 2014).

29.

Mahal

, Inverso

, Aizer

, et al.: Impact of African-American race on presentation, treatment, and survival of head and neck cancer. Oral Oncol, 2014; 50:1177–1181.