Quality of life, coping strategies and supportive care needs in head and neck cancer survivors: a qualitative study

Abstract

Purpose:

The purpose of this qualitative study was to better understand the lived experience of head and neck cancer (HNC) survivors between six months to nine years post-radiation. Quality of life, coping strategies, concerns for the future, and preferences for supportive care were explored.

Methods:

Semi-structured interviews were conducted in 31 HNC survivors from a Midwestern hospital. Interviews were recorded, transcribed verbatim and analyzed using qualitative thematic analysis.

Results:

Survivors described restrictions on daily living, social eating, and financial concerns. Despite these restrictions, survivors reported an overall high mentality and enjoyment of life. Coping considerations included adapting to a new normal and increased involvement in cancer support and faith groups. Preferences for supportive care included receiving more information about and being more involved in the treatment care plan, referrals to therapy and support groups, and more comprehensive follow-up in survivorship.

Conclusions:

While long-term HNC survivors adapt to daily living restrictions, a high proportion continue to have unmet needs. This data can guide the development of HNC survivorship interventions to inform optimal clinical guidelines based on patients’ perceived needs. This qualitative study uncovered distinct perceived needs of HNC survivors which can inform future service development. Incorporating referrals to supportive care services including speech language pathologist, physical therapists and dietitians into the standard of care before, during and after treatment would assist survivors in adapting to life after treatment and managing long-term health consequences of their disease.

Introduction:

Head and neck cancer arises in the oral cavity, oropharynx, hypopharynx, and larynx and accounts for approximately 4% of all cancers in the United States [1]. Many HNC survivors experience an array of profound consequences as a result of radiation to the head and neck including pain, dysphagia, xerostomia, speech loss and cognitive impairment [2]. Prior to the 2000’s, HNC patients were notorious smokers and alcohol users [2]. However, in recent decades there has been a rise in human papillomavirus (HPV)-driven tumors [3]. HPV-positive HNC patients differ from the HPV-negative patients in that they are generally younger, white adults in their 40s or 50s with better prognosis and improved survival [2-4]. This growing population represents a group of individuals in dire need of survivorship resources to manage and cope with their long-term treatment related consequences [5].

The anatomy of the head and neck plays a critical role in physical functioning, body image, eating, and socialization. When these structures are compromised as a result of diagnosis and treatment, survivors are at high risk of psychological, physical and emotional morbidity [2, 6-8]. Despite recent literature examining associations among various physical, emotional, social, and functional quality of life outcomes, understanding the complex interplay between quality of life, supportive care needs, and coping strategies for HNC survivors is poorly understood. Unmet supportive care needs have been identified in 50% to 66% of cancer patients, at diagnosis and six months post-treatment [9], however, such studies rarely include HNC patients [10]. While several studies have explored quality of life in HNC survivors, the majority have been quantitative and thus unable to explain the complexity of the phenomenon through the lived experience of survivors [7, 11-14]. Few studies have used an in-depth, qualitative approach and in those studies, the focus was on survivors during or immediately following treatment, rather than long-term survivors. Qualitative research provides a flexible, exploratory approach to examining complex phenomenon’s using survivor experiences and descriptions. It is possible psychoeducational interventions may enrich posttreatment HNC care and support coping strategies to adapt to survivorship and improve quality of life in this population [33]. In order to develop such interventions, a clearer understanding of qualitative work describing survivors’ lived-experience of unmet needs is required.

Thus, the purpose of this qualitative study was to better understand the lived experience of head and neck cancer (HNC) survivors between six months to nine years post-radiation. Quality of life, coping strategies, concerns for the future, and preferences for supportive care were explored.

Methods:

Ethical approval

The protocol was approved by the Institutional Review Boards of the University of Illinois at Urbana-Champaign and Carle Foundation Hospital and adhere to the principles of the Declaration of Helsinki. All participants were informed of the purpose and procedures of the study and informed, written consent was obtained from all prior to data collection.

Participants and recruitment

This was a qualitative interview study with English speaking adult HNC survivors’ age ≥ 18 years who had been previously diagnosed stage I-IV primary cancer of the oral cavity, oropharynx, hypopharynx, or larynx. Survivors were within 6 months to 10 years post-treatment with radiation or chemoradiation. Survivors were deemed by their oncologist and/or surgeon as having no evidence of disease and were able to consume food orally. Purposive sampling was utilized to seek eligible survivors who met inclusion criteria. HNC survivors treated at a Midwestern hospital within the past 10 years were identified via the Hospital Cancer Registry, mailed a letter explaining the research opportunity and were contacted via telephone 2-3 weeks later. In summary, 265 HNC survivors were screened for the study, 79 were deemed eligible; 31 signed letters of consent and completed the interview.

Data Collection:

Demographic and clinical characteristics

Participants’ completed a brief health survey that included self-reported data on socio-demographic and behavioral characteristics including gender, age, marital status, smoking and alcohol use. An electronic medical record (EMR) review was conducted to collect clinical data on cancer stage, and treatment type.

Qualitative phase

Semi-structured, face-to-face interviews were conducted by the first author (SC) between March 2018 and May 2019. Data consistency was ensured by using a single trained researcher who provided minimal verbal input and prompted only when appropriate [15]. Interviews were recorded, professionally transcribed verbatim and checked for accuracy to ensure a complete account of participants’ responses. An interview guide was utilized to consider themes which had been generated through the review of literature, a team of experts, and through the researcher’s clinical experience within the field (Supplemental Table 1). Probes within the interview allowed participants to raise unanticipated issues and flexibility to follow such leads.

Data Analysis:

Data was analyzed using a six-step thematic analysis approach, as outlined by Braun and Clarke, a qualitative method for identifying, analyzing and reporting themes [16]. Thematic analysis was chosen to provide a rich and comprehensive description of the events [16]. The same researcher who conducted the interviews, first re-familiarized herself with the data by reading the verbatim transcripts several times. All transcripts were reviewed independently by the first and second author who received prior training in qualitative thematic content analysis. Starting with line-by-line coding, statements thought to be related to chronic nutrition impact symptoms, quality of life and supportive care needs were coded and categorized. Codes were then amended and refined through discussion between the researchers until a single list was agreed. The first author entered the list of codes into Dedoose®, a web application used for qualitative data analysis, and coded all transcripts, adding codes when necessary. All transcripts were then coded by the second author to check for reliability. Discrepancies were resolved through discussion. Once the coding had been agreed, the first and second author reviewed the coded transcripts to search for common themes. These themes were reviewed, refined and named. Each theme was then given a written description. Care was taken throughout the analysis to guard participant anonymity.

Results:

Descriptive Results

Table 1 displays the demographic and clinical characteristics of the study population. All survivors were non-Hispanic. Slightly over half of survivors were male and most were diagnosed with stage IV cancer. Over half of survivors were married. Half of survivors were current drinkers and former smokers.

Table 1:

Demographic and Clinical Characteristics of HNC Survivors Participating in a Qualitative Study

	N=31 (%)
Age: Mean ± SD [range], years	63.2 ± 12.0 [32-81]
BMI: Mean ± SD [range], kg/m2	25.7 ± 4.8 [16.5-38.3]
Under/Normal weight	17 (54.8)
Overweight/Obese	14 (45.2)
Gender:
Male	18 (58.1)
Female	13 (41.9)
Ethnicity:
Non-Hispanic	31 (100)
Race:
European American/White	29 (93.5)
Other	2 (6.5)
Education:
≥High school/GED	14 (45.2)
Some college or more	17 (54.8)
Annual household income: (dollars/year)
$54,999 or less	18 (58.1)
$55,000 or more	13 (41.9)
Marital Status:
Married	19 (61.3)
Not Married	12 (38.7)
Smoking Status:
Current	2 (6.5)
Former	16 (51.6)
Never	13 (41.9)
Alcohol Status:
Current	17 (54.8)
Former	12 (38.7)
Never	2 (6.5)
Time since diagnosis:
≤ 6 months – 2 years	9 (29.0)
≤ 2 – 5 years	14 (45.2)
≤ 5 – 9 years	8 (25.8)
Tumor site:
Oral cavity	16 (51.6)
Oropharynx	11 (35.5)
Hypopharynx	1 (3.2)
Nasopharynx	1 (3.2)
Larynx	2 (6.5)
Cancer stage:
I	2 (6.5)
II	9 (29.0)
III	3 (9.7)
IV	17 (54.8)
Treatment:
Concurrent chemoradiation	18 (58.0)
Radiation only	13 (42.0)

Qualitative Results

Thematic findings

Through qualitative thematic content analysis, five themes related to HNC survivors’ experiences of everyday life were derived from the semi-structured interview transcripts. The headlines of the five themes were “learning to dance in the rain”, “loss of a meal”, “you have to be ready to change”, “anxiety and distress”, and “unmet supportive care needs” (Figure 1).

Figure 1:

Themes and subthemes of the head and neck post-treatment cancer experience

LEARNING TO DANCE IN THE RAIN

Quality of life, coping, mentality and normality

Despite HNC survivors experiencing an array of treatment-related consequences including loss of socialization, strength and physical functioning, eating and speech challenges, and financial distress, survivors reported an overall high mentality and quality of life stating they were “more grateful to be alive” and had “adapted” to a post-cancer life. Survivors reported treatment consequences were an “inconvenience” but were “strong-minded” because “life goes on”. One survivor shared:

“I know it’s never gonna be normal because of what was done, and I know I’m never gonna get back to the way it was prior to [treatment]…so that’s something that I can live with….though I will try my best to prove things wrong that I’m still gonna do it. I’m still gonna try to do as good as I did before.” (1041)

HNC survivors had developed relationships with other cancer survivors, primarily head and neck, and felt it was comforting and helpful when others shared similar concerns. While every survivor had a different experience learning to manage and cope with consequences, the majority accepted their “new normal” stating they “learned how to”, had “gotten use to”, or “adjusted to” their quality of life. One survivor stated:

“It’s a new normal for me, that’s just the way it is. And I accept it.” (1016)

Nearly all survivors reported a change in how they perceived their overall self-esteem. While a few reported a decline in self-esteem, the majority reported their self-esteem “went back up in survivorship” as many felt “grateful” to be alive and were “learning to dance in the rain”. Survivors mentioned faith and having a sense of humor helped improve their self-esteem and one survivor mentioned the rapid weight loss experienced during treatment gave them a newfound confidence:

“The things I wear now are things that I did not wear when I was 200 pounds…so, like, I can wear my daughter’s clothes now, and she’s 20….I am 45 years old and I’m dressing like a 20 year old right now.” (1015)

LOSS OF A MEAL

Social eating and eating enjoyment

While survivors reported an overall positive mentality, the majority reported negative perceptions of eating in public and reported feeling “self-conscious”, “embarrassed”, “panicked” and a “feeling of loss” due to eating problems. Survivors expressed how they missed eating certain foods, avoided foods during celebrations such as baby showers and birthdays, and either ate in advance or after social outings. One survivor noted they “run into the bathroom” after eating to wipe their face and clean their mouth because they do not want to be embarrassed by having food on their face or teeth. Another survivor was so insecure with her new way of eating she did not feel comfortable having a meal in front of her husband in the privacy of their own home:

“I eat at home, alone. I don’t like eating with [my husband]. I don’t like eating with anyone seeing me.” (1019)

In addition to concerns with social eating, the majority of HNC survivors in this study no longer enjoyed eating. Survivors felt eating was a planned task and needed to be scheduled into their day stating eating was “boring” and they merely “ate to survive”. One survivor stated “I don’t care if I eat or not” while another stated they still enjoy food but “not near” like they used to.

YOU HAVE TO BE READY FOR CHANGE

Modifications and adaptations

It was common for survivors to compare their current life to their life during the acute treatment phase which was “10 times worse than what it is now” as eating problems were found to cause a number of severe consequences in daily life. The longer-term survivors felt they had already suffered through the most dreadful part of cancer and they no longer thought about adaptations made to be able to eat, as it was just a part of their normal routine. However, there was quite a bit of ambivalence in how survivors expressed adapting to their “new normal”. It was common for survivors to make statements such as “you definitely have to be ready to change” and “[I] have lived this way for so long [I] developed ways around it” but would follow those statements with expressing how they would eventually “heal” and hoped their pain, dysguesia and other symptoms would lessen. One survivor described how he could taste chocolate, then goes on to state only certain chocolates, then goes on to wonder if chocolate even tastes like the chocolate he remembered at all:

“Chocolate came back fast….I have to make it really strong for me to taste it. I can taste it…..But, it doesn’t taste exactly the same…... There’s some chocolate that tastes terrible. I don’t know… maybe it’s in my head. I don’t know.” (1037)

ANXIETY AND DISTRESS

Future, strength and finances

Nearly all HNC survivors in this study expressed concerns regarding survival and reported experiencing “fear”, “anxiety” and a hypersensitivity surrounding treatment-related consequences that may result in a recurrence of the cancer. One survivor shared:

“it’s been kinda stressful because anytime I get something, it feels weird in my throat or I get sores in my mouth sometimes because of the dryness and that, and it’s always a concern if it doesn’t go away within a week or so that I need to go see the doctor.” (1002)

Survivors had concerns about their strength and functional status and believed their physical functioning greatly declined. As a result of these concerns, survivors sought their own physical therapy, speech therapy and performed special stretches and exercises for body pain, swallowing and neck pain. Survivors were hopeful therapy and exercise classes would help reduce treatment-related consequences and improve their current functioning. In addition to concerns regarding survival and strength, financial distress was a common concern in our population. HNC survivors were hesitant to purchase foods they may not be able to consume. Survivors also reported “saving” specialty products they viewed as expensive including dry mouth lozenges, gums, and supplemental oral nutrition shakes such as Ensure for times they “needed them most”. Furthermore, a survivors reported they were unable to continue work outside the home as a result of limited functional ability and others complained their “verbal would affect [ability to keep a job]” stating they “can’t talk well enough to do it so, [they] can’t anymore.”

One survivor shared:

“I needed to get back to work because the bills keep coming, which it’s very frustrating there because if you have no income coming in and all the bills keep coming, and you still don’t feel good, then what are you supposed to do in life? That was a huge issue for me. It’s like I gotta get back to work…I feel terrible, I got no energy, and the energy even- it’s been almost three years, and I still feel there’s days I feel like I can be up for four hours, and I feel like I need to go take a nap.” (1002)

UNMET SUPPORTIVE CARE NEEDS

Treatment plan, therapy, and health care needs

Survivors did not know how long treatment-related consequences would persist or if they would be permanent. They had received mixed-messages from their health care team and many were hoping to return “normal” as they were before cancer. While many survivors reported a strong support system, several experienced limited support. Survivors reported requesting their own therapies and seeking out local and online head and neck cancer support groups that were not offered from the cancer care team. Specifically, survivors wished they had been referred to a variety of health professionals including other speech language pathologists, dentists, and dietitians and felt this access would have made them more knowledgeable to adapting to life after treatment and handling additional health care concerns that arose in survivorship.

One survivor stated:

“the speech therapy was not a protocol, and I hope they were going to try to get that on as a protocol…I hope that they have been able to develop a referral or somehow a contact for the support group. I sought the support group out …. And if I hadn’t sought this out, it would not have been offered.” (1009)

Several survivors mentioned they would have liked to receive more information from healthcare professionals prior to treatment and felt the information should be tailored to their specific cancer and treatment-related consequences. One survivor shared:

“Well, I think you’ve gotta go ahead to the dietitian and say, “Hey, here’s the things you might wanna try.” She was a nice woman, but she did not prepare me for what was coming, and you need to have somebody that does.” (1042)

Survivors shared other health concerns as a result of HNC including malnutrition, dental issues and weakened immune systems and felt they were in a “high risk category” and had “more potential to get sick” because of these concerns. Furthermore, they wanted doctors to remember that “the disease resides within a person” thus life after treatment should be considered just as highly as treating the cancer itself.

Discussion:

This study aimed to examine the head and neck post-treatment cancer experience using a qualitative thematic approach that allowed for a rich description of survivors’ own experiences while adding to the limited body of knowledge examining quality of life, preferences for supportive care, treatment related consequences and coping mechanisms for HNC survivors. Thematic analysis suggest survivors adapted to post-treatment life and coped by becoming involved in cancer support, church and faith, and exercise groups. Despite survivors reporting an overall high quality of life they reported restrictions related to social eating, strength and functional loss, and financial concerns. Many survivors felt they were not provided with adequate specialty therapy opportunities including meeting with speech language pathologists and physical therapists and would have liked to receive these services.

Despite survivors describing daily living restrictions, they often minimized these restrictions and displayed fortitude, a positive mentality, high self-esteem and a greater appreciation for life. It is possible the greater length of time since diagnosis may have a positive influence on quality of life as survivors may have a generally more optimistic outlook [17]. It is also possible, given the longer survivorship period, survivors have found ways to adapt and cope with their new normal [2, 18-20]. This “downplaying phenomenon”, as coined by Wells et al., was seen within other studies where participants described challenges as “the price to be paid” for not having cancer [20-25]. Despite survivors adapting to post-treatment life, they highlighted a need for health care professionals to explore these adaptations in survivorship care and utilize probing questions to address modifications needed to sustain a high quality of life.

Eating challenges are common in HNC survivors and have been previously shown to cause a number of severe consequences in daily life [2, 26]. Similar to two studies examining acute complications of eating in HNC survivors, our long-term survivors avoided eating in social settings which resulted in feelings of loss and isolation [26, 27]. For many, the feelings of isolation were an uncomfortable but necessary change as survivors were embarrassed by their changed way of eating. Furthermore, the majority of our survivors did not enjoy eating and felt eating was a scheduled task. This is contradictory to a qualitative study by Ganzer et al., in which all HNC survivors reported eating challenges but also stated they enjoyed eating and consistently reported being able to “eat whatever I want” [20]. While it is unknown why the two populations differed in eating enjoyment, as both populations consisted primarily of stage IV cancer survivors, a possible explanation could be that our interview guide provided more opportunities for probing questions. The “downplaying phenomenon” as mentioned previously has been consistently cited in the HNC population where individuals describe themselves as “lucky” or “it’s the price to be paid for survival..” [20-25]. It is possible that HNC survivors in the Ganzer population had learned to deal with their deficits and the interview questions did not allow the opportunity to probe beyond the surface level [20, 25]. Another unexpected subtheme of our interviews was financial distress, likely as a result of the cost of cancer treatment and the ability to return to work. As a result of limited finances, our HNC population was hesitant to purchase foods they felt they may not able to eat. Thus, it is possible our survivors are consuming the same foods every day and lacking variety, satiety, and satisfaction during meals. Further research examining financial toxicity and the implications on eating behaviors in HNC survivors are warranted based on these findings.

Similar to other studies, our study contributes to the emerging evidence on needs specific to HNC survivors, highlighting expectations about the survivorship phase, the management of symptoms and therapeutic opportunities [28-30]. All survivors in our study reported a fear of recurrence and many were apprehensive that health concerns, including muscle loss and malnutrition, increased their susceptibility to illness and would persist throughout their lifespan. As a result of concerns, survivors shared specific recovery needs and preferences for therapeutic supportive care. Similar to a study by D’Souza, survivors in our study wanted to receive more information about the trajectory of their treatment care plan [5]. Our survivors wanted to be more involved in the decision making process and would have preferred emphasis on quality of life after treatment to be viewed just as highly as quantity of life [2]. Nearly all survivors reported issues with dysphagia and many reported neck and shoulder pain. Despite the presence of these symptoms, survivors often reported seeking out speech language pathology and physical therapy appointments on their own. Survivors felt discouraged these therapies were part of their comprehensive care plan and desired more rigorous follow-up care to assist in adapting to life after treatment and handling additional health care concerns that arose in survivorship.

Although this study has expanded the existing literature regarding quality of life, supportive care needs, and coping strategies in HNC survivors, there are several limitations that should be addressed. Given the cross-sectional study design, we were unable to capture changes in quality of life, coping, and needs over time and a longitudinal study could capture these changes across the cancer continuum. The population of HNC survivors enrolled in this study lacked cultural diversity and were from one Midwestern hospital system; thus, results may not be generalizable across ethnic groups and geographic locations. Furthermore, the majority of our HNC survivors were stage IV, however, as there are currently no screening mechanisms in place for HNC, the majority of survivors are diagnosed at stage III or IV. Moreover, while purposeful sampling was utilized, selection bias may exist in this study because individuals who were approached, but did not participate, may have had a different lived experience regarding quality of life, coping, and supportive care needs.

Strengths of the study include the use of a qualitative approach allowing for a broad and comprehensive perspective of the day-to-day experiences and challenges after HNC. Unlike quantitative data, qualitative findings are articulated in the survivors’ own voices and can enhance the understanding of important research questions in a way that is not possible with quantitative research. Furthermore, the same researcher performed all face-to-face interviews, allowing for dependability in data collection, and all interviews were independently coded by the first and second author until complete agreement was made.

Comprehensive assessment of HNC patients including using probing questions in surveillance visits to identify and manage unmet survivorship needs and explore adaptations made to sustain quality of life may result in better treatment adherence and tolerance, reduction in long-term side effects, and ultimately improved treatment outcomes and survival [31]. Survivors specifically requested further multi-professional referrals to supportive care services including speech language pathologist, physical therapists and dietitians to help assist in adapting to life after treatment and managing long-term health consequences of their disease. The results of this study highlight the distinctive needs of HNC survivors and provide healthcare professionals with evidence that can inform future service development.