How Patients of Oral Cancer Cope Up with Impact of the Disease? A Qualitative Study in Central India

INTRODUCTION

In Indian scenario, oral cancer is one of the most commonly occurring cancers with an estimated 600,000–700,000 deaths in 2012.[1] The International Agency for Research on Cancer GLOBOCAN project[2] has predicted that India's cancer burden will nearly double in the next 20 years, from slightly over a million new cases in 2012 to more than 1.7 million in 2035. Oral cancer is treated by different modalities that depend on the stage of presentation. Due to different reasons, most of the patients of oral cancer present late with advanced disease. The treatment options include combination of surgery, radiotherapy and chemotherapy. Palliative therapy is often required in advanced disease. The side effects of the treatment increase the suffering of the oral cancer patients. Among the different physical complains of the patients, the most common are pain, dryness of mouth, sticky saliva, feeding problems, and problem in speaking.[3] Disfigurement resulting from the massive surgeries undertaken to control the disease results in a psychological stress to the patients apart from the physical agony.[45] The other problems are professional limitations, economic crisis. and disruption of family. The ramification of these problems of cancer survivors is not a new discovery, but most of the studies focus on the quantitative analysis using some standardized tools such as European Organisation for the Research and Treatment of Cancer.[6] But with these tools, it is not easy to understand the experience of the oral cancer patients as regards to their coping with different problems they face because of the disease and its treatment. As a result of which, this very study was designed to have a detailed understanding of the problems faced by the oral cancer patients from the time of diagnosis till the end of treatment procedures.

MATERIALS AND METHODS

We used in-depth interviews (IDI) in this qualitative study. During the IDIs, the participants were encouraged and prompted to talk in depth about the different problems they came across since the diagnosis of oral cancer and how they could cope up with the problem. We focused on understanding the experiences and the needs of the oral cancer patients as regards to the early diagnosis and treatment of the disease.

RESULTS

After analyzing the transcripts, we could point out four major themes as regards to the concerns of the oral cancer patients regarding the diseases, treatment, and its ill effects. Those were concerns for their quality of life, social constraints, financial security, and feeding problem. Each of the themes was explained by means of further subthemes.

Theme 4: Concern regarding eating

Eating is a fundamental aspect of our life, and it has been found to be greatly affected by oral cancer. It is not only that they do not get taste to the food; they cannot chew it and swallow it. Few of the included study participants were on ryles tube feeding through which they were fed with liquid food and fruit juices. One of the patients (P7) also said that,” I don’t feel the urge to eat now…. It does not only increase my pain while chewing and swallowing, but also causes embarrassment in front of others”. Sticky saliva, drooling, and dry mouth are the other common complains of oral cancer patients that they experienced after their treatment was completed.

The findings of the qualitative study on the oral cancer patients are further illustrated in the concept map on the psychosocial impact of oral cancer on the patients as shown in Figure 1.

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Figure 1

Concept Map showing the psychosocial impact of oral cancer on patients. Color code: Red (box and arrow): Negative theme, Green (box and arrow): Positive theme, Pink (box): Negative sub-theme, Bold arrow: Direct association, Broken arrow: Indirect association

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DISCUSSION

Our study came up with a variety of experiences shared by patients of oral cancer. The experiences included their physical problems, psychosocial implications of the disease, and organizational areas of life. At the time of interviews, most of the patients opened up in sharing their vivid experiences, some of which were positive while many were the negative experiences. This study was concerned with psychosocial impact of oral cancer on the cancer survivors and to help in suggesting recommendations for improvement of the impact.

First, patients expressed their worry regarding disfigurement in the face, for which they kept their face covered most of the time apart form avoiding any social gathering. Arunachalam et al.[5] had similar findings where they found visible disfigurements had a profound psychosocial impact on the patients. Disfigurement also has a negative impact on self-esteem, body image, and quality of life of the individual concerned. These findings were supported by studies conducted by Vidhubala et al.[4] and Chaturvedi et al.[9] Few of the participants, especially the females had shown their concern regarding hair fall and graying of hair following chemotherapy. Further, radiation therapy also resulted in burning of exposed skin of face and neck and made them permanently black. Van Der Donk et al.[10] did a detailed study on the change in quality of life in female patients as a result of hair loss, and they found a significant association between hair loss and negative impact on the quality of life of women.

Second, we found that oral cancer patients were also concerend regarding their inability to eat properly. Apart from increasing the cosmetic importance of face, oral cavity, and mouth are concerened with a number of important functions such as eating, chewing, swallowing, and talking. Patients of oral cancer who have undergone surgery suffer from a significant functional disability. They get embarrassed, as they cannot eat normally. Hence, many of them avoid community programs and stayed indoor mostly. Difficulty in eating food might be due to stiffness in the mouth as a result of fibrosis following radiation or surgical manipulations, or it might be due to the pain in the mouth or the jaw as a result of the diseases per se Many a times, teeth had to be extracted for treatment purpose making the oral cancer patients incapacitated to chew foods. Problems in swallowing could be mild to severe, where few people might eat solid food to few of them taking only liquid diet that too with ryles tube.[11] Improper diet often resulted in malnutrition and further deteriorated the health of patients. Gellrich et al.[12] shared similar opinion. They stated that malnutrition in oral cancer patients as a result of deficient diet resulted in a negative impact in the quality of life of the individuals.

Third, patients who had undergone treatment and were still suffering from its squeal were in stress and many of them were the undiagnosed cases of depression and anxiety. They were cut from the society, as they could not mix with people as they used to do previously. There had been reported cases of divorce after the individual was diagnosed with cancer. More over, most of the oral cancer patients were elderly who were already suffering from one or the other comorbid conditions. This ultimately increased the emotional distress. Dropkin[13] and Wu et al.[14] got similar observation as regards to anxiety and depression in head-and-neck cancer patients. Wu et al.[14] stated that cancer patients suffered from anxiety and depression in the first 6 months of their treatment and the different physical inabilities such as dysfunction in salivation, eating problem, and problems in maintaining social relationship increased the emotional stress in them.

Fourth, financial insecurity was found to be another major concern that came up from the IDIs. Oral cancers occur mostly among the male population in Indian scenario[15] and they are the prime bread earners of the families. This disease and its complications make them incapacitated for earning their livelihood resulting in cutting down of important routine family expenses such as postponement of marriages, change of schools of the kids, and change of profession. The elderly participants complained of the burden of dependency on their children as a result of the disease. All these factors acting together have a negative role to play in the life of the patients. Sharp and Timmons[16] found in their study that the cost of cancer treatment was huge. Wissinger et al.[17] did a systematic review on the economic burden of head-and-neck cancer to evaluate the evidence existing on the association of resource use and cost of the diagnosis and treatment of head-and-neck cancer. They have included 77 studies in their systematic review, where Wissinger et al.[16] found that treatment costs for head-and-neck cancers are generally high for cancers with advanced stages. Shankaran[18] in her study in financial impact on Cancer care found that cost for cancer care starts from the time of its diagnosis. A battery of important investigations has to be done after someone is diagnosed to have a cancerous growth. Chakrabarty et al.[19] in their study on the economic impact of oral cancer stated that in low- and middle-income countries like ours, where the most common mode of financing healthcare is out-of-pocket, causes a great pressure on household consumption level, and along with that the income loss due to sickness or death have impact on households finances.

Surprisingly, many of the patients came up with positive outlook regarding the occurrence of the disease and its consequences. More inclination to spiritualism, increased understanding of the pathology of the disease and acceptance of the disease helped the patients suffering from this deadly disease to cope up with all the consequences of oral cancer and its treatment. Kandasamy et al.[20] concluded in their article that spiritual well-being is a vital component of quality of life of the advanced cancer patients and was closely related to their psychological and physical distress. They have also recommended integrating spirituality into the management strategy of cancer, especially during palliation.

CONCLUSION

Treatment of oral cancer is beyond pharmacological and surgical interventions. The experiences of the study clearly points out the huge psychosocial and financial impact of the disease on the individuals that need to be addressed along with the continuum of care.