|Year : 2019 | Volume
| Issue : 3 | Page : 638-644
Quality of life of patients with head and neck cancer: A mixed method study
Shalini G Nayak1, Mamatha Shivananda Pai2, Linu Sara George3
1 Department of Medical Surgical Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Manipal, Karnataka, India
2 Department of Child Health Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Manipal, Karnataka, India
3 Department of Fundamentals of Nursing, Manipal College of Nursing, Manipal Academy of Higher Education (MAHE), Manipal, Karnataka, India
|Date of Web Publication||29-May-2019|
Dr. Mamatha Shivananda Pai
Department of Child Health Nursing, Manipal College of Nursing Manipal, Manipal Academy of Higher Education (MAHE), Manipal - 576 104 Karnataka
Source of Support: None, Conflict of Interest: None
Aim of the Study: The current research was conducted with the aim of determining the quality of life of head and neck cancer (HNC) patients using mixed method approach.
Methods: A mixed method triangulation design (QUAN + QUAL) was adopted in the study. Quantitative data were collected among 54 and qualitative data were collected till data saturation using nested sampling technique. Data were collected from seven oncological wards of two tertiary care hospitals during the 4th week of radiation therapy. Quantitative data were collected through functional assessment of cancer therapy: head and neck, and a semi-structured interview schedule was adopted to elicit their experiences. Quantitative and qualitative data were compared during the analysis phase. Both qualitative and quantitative data were depicted in meta-matrices.
Results: Results showed that the most affected domains were functional well-being followed by HNC subscale. Similar findings were observed in narrative description of participants. Most focused experience was pain, and difficulty in eating and swallowing was experienced due to pain. Their verbal communication was inefficacious due to loss of voice and tone. Moreover, communication was difficult owing to changes in the oral mucous membrane and pathology.
Conclusion: Patients with HNC suffer from varying degrees of psychosocial problems, and it is important to identify the psychosocial adjustment of the patients since the symptoms are sufficient to lay heavy burden.
Keywords: Functional assessment, head and neck cancer, lived experiences, mixed method research, quality of life, South India
|How to cite this article:|
Nayak SG, Pai MS, George LS. Quality of life of patients with head and neck cancer: A mixed method study. J Can Res Ther 2019;15:638-44
| > Introduction|| |
In several regions of the world, head and neck cancer (HNC) is very common. Overall, HNC accounts for >500,000 cases annually worldwide. Males are significantly affected more than females with ratio differing 2:1–4:1. In the Indian subcontinent, mouth and tongue cancers are more common.
Quality of life (QOL) has an inherent meaning for most people. QOL encompasses broad notions affecting global life satisfaction, including family and personal safety, interrelationships, good health, and leisure pursuits.
The most employed methodology of research and vast majority of publications in QOL is quantitative research. These quantitative methods have value in reproducing the clinical research and facilitating the rigor of the studies. However, this methodology is also at concomitant risk of losing the sensitivity or the subtlety and distinctions experienced by patients suffering and living with health problems. Combining quantitative and qualitative approaches in the field of QOL research would benefit and increase the value.
Researchers working broadly and specifically in the field of QOL and health outcomes have found that mixed method researches are of increase in importance for both methodological and theoretical importance. QOL research often requires answers for multiple scientific, epistemological, and clinical foci and also involves integrating diverse types of evidence and perspectives. Data of qualitative study may range widely from biological data, outcomes such as loss of productivity, data from patients' clinical records, and health-care delivery indicators. Hence, to answer these multifaceted questions and to bring out the high-quality evidence, mixed method researches are essential.
After diagnosis, the treatment most frequently determines a deterioration of basic functions such as breathing, mastication, salivating, swallowing, and speaking. Sense's impairment such as hearing, taste, and smell along with possible esthetic changes will promote a negative impact in both patients and their relatives health-related QOL (HRQOL). Hence, HNC is undoubtedly related to a decrease in HRQOL.
At the time of diagnosis of HNC, patients often present with swallowing difficulties due to tumor location and size. Further oncological treatments such as surgery and radiotherapy can exacerbate these difficulties and cause major nutritional problems.
Patients could experience HNC as more emotionally traumatic than other cancers because of visible disfigurement and its life-threatening impact on vital functions. This long-term illness often leads to lifestyle changes such as to physical function, work and everyday tasks, interpersonal relationships, and social functioning.
HNC causes severe disabilities for those afflicted. These malignancies affect the most visible area of the body and may have a profound impact on the most fundamental activities of daily life, such as speech, breathing, eating, and drinking. Patients with HNC often already have a compromised nutritional status at the time of diagnosis, before treatment has started, because tumors alter chewing and swallowing ability or because of taste changes. Radiotherapy to the head and neck causes side effects such as pain in the mouth and throat, swelling, and dryness of the mouth, which are superimposed on existing eating problems.
| > Methods|| |
The aim of the study was to determine the QOL of HNC patients. Quantitative research is the methodology to discover useful and relevant knowledge for the profession. Studies of social work are also complicated by innumerable, unmanageable environmental conditions and extraneous variables. Qualitative research promotes the superiority of their approach to investigating beneath the surface to formulate theories.
Mixed method research helps in understanding the complex issues, underlying with the patients suffering from HNC. Hence, a mixed method research approach was considered to be more appropriate for the study, since it was more comprehensive to the context of research. Thus, the weakness of one qualitative or quantitative research method helped in extracting the strengths and diminishing the weaknesses in both approaches within a single study.
A descriptive survey approach was used initially to determine the QOL of HNC patients, followed by a phenomenological approach to acquire a deeper understanding of lived experiences. The quantitative and qualitative approaches are complementary to each other since they represent words and numbers which are two fundamental languages of human communication. Thus, a mixed method–triangulation research design was adapted to enrich the inquiry of the area under the study by judicious triangulation of quantitative and qualitative data. Both quantitative and qualitative data were collected concurrently by paying equal importance to both methods (QUAN + QUAL) and the design is depicted in [Figure 1].
|Figure 1: Schematic representation of triangulation design (Adapted from Creswell J.W.  Research design: Qualitative, quantitative, and mixed method approaches [3rd ed]. New Delhi)|
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Data collection tools and techniques
Data were collected among 54 subjects of seven oncological wards of two tertiary care hospitals from January 2015 to May 2015. All study-related materials and informed consent were approved by Institutional Ethical Committee of the research setting (IEC 705/2014).
The HNC patients receiving radiation therapy during the fourth week of radiation therapy from both gender were the set inclusion criteria for the quantitative approach. The female patients from the quantitative approach, those who were able to communicate verbally were recruited for the qualitative approach. Thus, the sample of qualitative strand was subset of quantitative strand; hence, the study had a nested sampling technique.
Data were collected through functional assessment of cancer therapy: head and neck (FACT-H&N), which is a standardized scale with 39 items. The items of the scale are grouped into two subscales: general scale with 27 items and HNC-specific scale with 12 items. The general subscale consists of four primary domains: physical well-being (7 items), social and family well-being (7 items), emotional well-being (6 items), and functional well-being (7 items). Each item is rated from 0 to 4 and is a declarative statement. Reverse scoring was required for some of the items. QOL was considered better, indicated by higher scores. This questionnaire was created and validated by Cella et al. (1999) to assess the QOL and psychometric and functional assessment of the cancer patients. Since it is a standardized tool, necessary permission was obtained from FACIT.org.
A semi-structured interview schedule was developed after discussing with HNC patients to elicit their experiences and reviewing the literature extensively. This tool consisted of 13 open-ended questions to explore the experiences of HNC patients. The lead question was “Describe your experiences having diagnosed with the current illness.” The other questions followed based on the answer provided by the HNC patients. The order of these questions based on the responses provided.
Data collection and analysis were done simultaneously. Quantitative and qualitative data were analyzed separately using SPSS 16 (SPSS Inc., Chicago) and Open Coding System 4.0 (ITS and Epidemiology, University of Umea), respectively. The audio-taped responses were transcribed for data analysis. The transcribed data were translated into English. The present study adapted descriptive phenomenological approach was to reach the true meanings through engaging in-depth into reality.
Mixing occurred at the analysis phase of the research; both quantitative and qualitative data were actually merged in the areas of QOL at the analytic phase of the continuum. The qualitative data were transformed quantitatively by the number of times they occur in the text data. Meta-matrices were built to compare the quantitative and qualitative data [Table 1]. Thus, the researcher quantified the qualitative data and then compared the quantitative results with qualitative data. Mixing of quantitative and qualitative data is shown in [Figure 2].
|Table 1: Meta matrices of frequency and percentage of quantitative data and narrations of qualitative data|
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| > Results|| |
The mean age of the sample was 55 years, 31 (57.41%) of subjects were above mean age group, and 23 (42.59%) were below mean age group. The sample was with male preponderance 43 (79.63%), and all the participants were married. Twenty-six (48.15%) of them had habit of smoking, 35 (64.81%) were chewing tobacco, and 16 (29.63%) were alcoholics. Most (45 [83.33%]) of them were suffering from the illness for 2–6 months, 19 (35.19%) had cancer in the oral cavity, and another 25 (46.30%) were suffering from cancer pharynx. Treatment modality for most (43 [79.6%]) of them was radiotherapy with chemotherapy, and the dose of radiotherapy was 70 Gy/35#/7 weeks for 44 (81.5%) of the participants.
Description of the functional assessment of the patients with head and neck cancer
Data presented in [Table 2] show the possible and obtained minimum, maximum scores, mean, and standard deviation (SD) of the sample. Data also show minimum scores in the domain of functional well-being maximum 19, minimum 1, mean 11.59, and SD 3.89 followed by HNC subscale (HNCS) of maximum 28, minimum 4, mean 12.33, and SD 4.62. The trend of low scoring in the domain of physical well-being was observed among the patients diagnosed with cancer of oral cavity.
|Table 2: Description of the domain scores of functional assessment of the patients with head and neck cancer (n=54)|
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Relationship among the domains of functional assessment of the patients with head and neck cancer
This section presents the relationship among the domains of functional assessment of the patients with HNC. Since the data were not following normal distribution, Spearman rho was computed to assess the relationship between the variables.
The data in [Table 3] show that there was a moderate-positive correlation between social and emotional domain (r = 0.440, P = 0.001) and emotional versus HNCS (r = 0.487, P = 0.001) domains. A weak-positive correlation found between physical versus functional domain (r = 0.279, P = 0.041). There was no correlation between physical and social domain (r = 0.078, P = 0.577), physical and emotional domain (r = 0.258, P = 0.059), physical and HNCS (r = 0.203, P = 0.141), social and HNCS (r = 0.253, P = 0.045), functional and HNCS (r = 0.364, P = 0.035), and social and functional domain (r = 0.226, P = 0.101).
|Table 3: Correlation matrix among the domains of functional status of the patients with head and neck cancer (n=54)|
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Mixed data: Meta-matrices of quantitative and qualitative data
Data in [Table 1] show that the meta-matrices built based on frequency and percentage of few items from FACT H&N scale and narratives obtained from semi-structured interview describing the lived experiences complementing the quantitative findings. Participants' focused experience was pain. Difficulty in eating and swallowing was also experienced due to pain. They had limited choice of food due to these experiences. Loss of control over chewing and swallowing was perceived by most of them in different ways. Participants also experienced restricted or limited eating due to various reasons. Some of them had impaired oral mucous membrane integrity whereas others had impaired salivary secretion. Eating was painful experience for many of the participants. A change in the integrity of mucous membrane in the oral cavity and throat was source of pain in addition to primary tumor. Participants also felt that their verbal communication inefficacious due to loss of voice and tone. Moreover, communication was difficult owing to changes in the oral mucous membrane and pathology. They remain detached or involve in the unimportant activities to spend the time.
| > Discussion|| |
Findings of the present study showed that the most affected domains among patients HNC are functional well-being, HNC-related symptom, and physical well-being. There was a moderate-positive correlation between social and emotional domain (r = 0.440, P = 0.001) and emotional versus HNCS (r = 0.487, P = 0.001) domains. A weak-positive correlation found between physical versus functional domain (r = 0.279, P = 0.041). The findings of qualitative methodology also supported the above findings. However, researchers did not find any studies in the subject using mixed method approach.
The findings of the present study are partially supported by a study conducted by Head et al. at Louisville to find the relationship between weight loss and HRQOL in persons treated for HNC. FACT-H&N scale was used among 151 HNC subjects to assess the QOL. The mean and SD of subscale is as follows: physical well-being - 19.0 ± 7.4, social well-being - 21.8 ± 5.1, emotional well-being - 17.9 ± 5.1, functional well-being - 16.1 ± 7.6, and HNC-specific scale - 20.2 ± 8.8.
QOL among patients treated for metastatic cutaneous squamous cell carcinoma of the head and neck at Sydney was assessed in 2011. Data on QOL were collected among 42 subjects using FACT-H&N scale. Results showed that the mean and SD of FACT-H&N subscale are as follows: physical well-being - 24 ± 5, social and family well-being - 24 ± 4, emotional well-being - 20 ± 5, functional well-being - 23 ± 4, H&N subscale - 32 ± 5, general subscale - 91 ± 13, total - 124 ± 17.
After diagnosis, the treatment most frequently determines deterioration of basic functions such as breathing, mastication, salivating, swallowing, and speaking. Sense's impairment such as hearing, taste, and smell along with possible aesthetic changes will promote a negative impact on both patients and their relatives HRQOL.Hence, HNC is undoubtedly related to a decrease in HRQOL. The results of a study conducted in Portugal to assess the patient reported outcomes in 102 consecutive HNC patients using FACT H&N shows the mean and SD of various domains as follows: physical well-being 0.71 (0.22), social/family well-being 0.66 (0.17), emotional well-being 0.62 (0.17), and functional well-being 0.51 (0.19).
At the time of diagnosis of HNC, patients often present with swallowing difficulties due to tumor location and size. Further oncological treatments such as surgery and radiotherapy can exacerbate these difficulties and cause major nutritional problems. Patients can be given radiotherapy pre- or post-surgery or as a sole treatment modality. Up to 60% of patients receiving radiotherapy treatment have at least one symptom that can make eating more difficult. It is well known that standard radiotherapy treatment (2 Gy/day, 5 days/week to at least 60 Gy) can result in an increased risk of weight loss both during and following treatment.
A qualitative study was conducted in Atlanta to assess the suffering of communication in primary stage HNC. Data were collected using open-ended questionnaire and in-depth interview. The interviews were transcribed verbatim and thematically analyzed. The three important themes emerged were “a self-diminished by cancer,” “the fear of addiction to pain medications,” and “hopelessness and the loss of meaning in life” after squamous cell carcinoma of the head and neck.
Eating problems are common in patients with HNC and may remain for a long period of time after treatment. A qualitative study using in-depth semi-structured interview was conducted among 13 HNC patients nine months after the termination of radiotherapy. Results of the experience of food, eating, and meals up to 9 months after radiotherapy was captured in six categories: “a long journey-taking small steps to an uncertain future,” “a new way of eating,” “eating without satisfaction,” “challenging meals outside the family,” “support and information – the key to a successful journey,” and “the creation and acceptance of a new normal.” The study concludes that all members of the multi-professional team need to be aware of the struggles with food and eating experienced by patients with HNC during the convalescent period. It is therefore important that the follow-up focuses on all aspects of food, eating, and meals as a part of a holistic approach.
| > Conclusion|| |
Patients with HNC can often suffer from varying degrees of functional problems. Many also must try to cope with eating, swallowing problems, and associated psychosocial issues. Findings of the present study also showed fewer score in the areas of functional well-being. Experiences of pain, difficulty in chewing, swallowing, and communication were evident among the participants. Understanding living experiences of patients with HNC is important for the health-care professionals to improve the care. Considering their descriptions and duration of side effects is essential to provide comprehensive care. Moreover, it is also important to identify the psychosocial adjustment of the patients since the symptoms are sufficient to lay heavy burden on them.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3]
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