Challenges faced by patients undergoing radiotherapy for oral cancer: A qualitative study
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/IJPC.IJPC_40_19
Source of Support: None, Conflict of Interest: None
Keywords: Complications, oral cancer, qualitative research, radiotherapy
Oral cancer is a significant component of the global burden of cancer. It affects 300,000 people worldwide annually, which accounts for 2.1% of the total world population, with two-thirds of the occurrence seen in men. Oral cancer ranks among the three most common cancers in India, and in some areas, it accounts for almost 40% of all cancer deaths. In most of the regions in India, oral cancer is the second-most common malignancy diagnosed in men and the fourth-most common in women. It results in severe disabilities and has a profound impact on the most fundamental activities of daily life.
Although various treatment modalities exist for oral cancer, surgery and/or radiotherapy remain the gold standards., A majority of the patients with oral cancer receive radiotherapy on an outpatient basis every day for up to 6 weeks, following which the adverse effects of radiotherapy can be observed in cells that divide rapidly such as the mucous membranes. These adverse effects result in various side effects such as pain, stress, difficulty in eating, dryness of the mouth, and xerostomia. Radiotherapy also complicates further surgery since the endarteritis, in particular, impoverishes healing. Radiotherapy is a complex and dynamic pathobiological process that hampers the quality of life and leads to physiological and psychological distress in a patient.
Studies have been conducted to understand the experience of pain along with other implications for patients in terms of quality of life, nutrition, and ultimately treatment outcomes, thus marking a long and excruciating journey laden with problems affecting physical, psychological, and social aspects., However, there is a lack of evidence focused on patients' verbal accounts of their overall experience during radiotherapy, which has not been described sufficiently despite being of great importance. Therefore, the current study was undertaken to gain a deeper understanding of the issues experienced by such patients and to leverage these findings to formulate a treatment plan for them. The aim of the current study was to describe the experiences related to the oral health of patients with oral cancer during radiotherapy.
A phenomenological approach was adopted to gain a deeper insight into the everyday “lived” experiences of patients undergoing radiotherapy.
Epistemologically, phenomenological approaches are based on a paradigm of personal knowledge and subjectivity and emphasize the importance of personal perspective and interpretation.
The study was conducted in the cancer ward of the Centre of Oncology, M. S. Ramaiah Teaching Hospital, Bengaluru, Karnataka, India.
Patients suffering from oral cancer and undergoing radiotherapy for the past 2 months were selected as the participants for the study.
The sampling strategy chosen for the present study was purposive sampling, through which patients capable of providing relevant and meaningful information regarding their experiences during radiotherapy were selected and recruited. The age of the patients ranged between 35 and 72 years. The participants provided written consents for their participation, following which the study was approved by the Institutional Review Board of M. S. Ramaiah University of Applied Sciences.
Interviews were conducted based on an interview guide [Table 1], prepared in English, which was developed using the literature search and was later modified according to the inputs from the subject matter experts. The interview guide was also translated into Kannada and Telugu – the two predominantly spoken languages in that community. It consisted of nine questions, including opening, key, and closing questions, of which six were related to experiences of pain, chewing, and swallowing during radiotherapy [Table 1].
Data collection process
The interviews were conducted by the first author with the patients admitted to the cancer ward, as they were comfortable with interaction there. Data were collected until data saturation was observed. After interviewing 16 participants, it was observed that no additional information was likely to be gained. A preliminary interview with a few opening questions was conducted to develop the rapport between the researcher and the participant. Each interview lasted for 60–90 min. All interviews were audiorecorded using a mobile phone in the Adaptive Multi-Rate (.amr) audio codec format, following which they were transcribed verbatim by the investigator. Social cues of the participant, such as voice, intonation and body language were noted, as they are capable of providing a substantial amount of additional information that can be used to strengthen the verbal answer provided by the participant.
The codes were then reanalyzed and grouped into patterned categories that were derived from the in-depth interviews. Subsequently, a theme was derived from the data, using the concept thematic analysis framework. In this manner, analysis of the data was repeated until no further themes emerged, and all the relevant text was coded.
Sixteen in-depth interviews were conducted for the patients undergoing radiotherapy. The participants included 10 female and 6 male patients, with a mean age of 58.4 years ranging from 35 to 72 years.
Analysis of the data generated two types of codes, i.e., deductive codes and inductive codes, resulting in the emergence of four main categories – “Pain,” “Nutritional Consequence,” “Barriers in Communication” from deductive codes, and “Support system” from inductive codes. These categories helped in deriving the theme “Multifaceted experience of patients undergoing radiotherapy” as shown in [Table 2].
Sores and boils in the patient's oral cavity were labeled as painful. A 72-year-old woman stated: “When they give the radiation there are heat-boils formed, which become a wound and cause pain.”
A 65-year-old male patient said: “I was eating well in the beginning. But after a few days, I find it difficult to eat food. I only drink Rice Porridge.”
One of the respondents explained his difficulty in communicating his problems. He said, “Words are not clear when I speak.” “Yes, I only speak only a little. When I speak a phrase/sentence it starts to hurt, so then I stop talking.”
The current study explored several aspects of oral health and the issues experienced by oral cancer patients undergoing radiotherapy. The theme of the study highlights all the facets of experiences faced by the patients. It was observed that the major issues cited by the patients were those related to pain and coping with it, apart from their communication skills and nutritional status also being compromised. The study led to the emergence of an important category called “Support system.” The motivation that enabled the patients to comply for and persevere the painful treatment was provided by their families, fellow patients, and health-care providers.
Similar results were obtained from the studies showing that patients with head-and-neck cancer (HNC) have complex pain issues that have a significant impact on their treatment, general well-being, and recovery., The studies also concluded that HNC patients did not report that their severe physical pain influenced their psychological suffering, although it did impact their social lives. Furthermore, nutritional consequences were reported to have a detrimental impact on the patients' daily routines. Studies have also captured eating problems experienced by HNC patients in two interrelated main themes: “Ability to chew and swallow” and “Will and desire to eat.”, Patients reported that they were willing to eat but were unable to do so. Similar observations made in previous studies show that the eating problems altered the psychological and social dimensions of food for the respondents. Restricted food choices and diminished taste changed the respondents' overall satisfaction levels achieved through food.
It is, however, important to note that despite the participants facing several difficulties such as “Pain,” “Barriers in communication,” and “Nutritional consequences,” their ability to cope with such difficulties was substantially enhanced by the emotional and psychological support available to them from their families in the form of a “Support System.” Most participants generally agreed that their families were the essential source of support for them. Further, fellow cancer patients also provided their valuable support to each other by sharing their experiences and exchanging knowledge related to self-care.
The use of a phenomenological approach was one of the major strengths of the current study, allowing a rich description of the participants' experiences of pain, difficulty in eating, and speech during radiotherapy.
Although this study provides meaningful insights, some limitations have been identified in its findings. One such limitation was that the participants were recruited from one setting could limit the transferability of the study's findings.
The study demonstrates that the patients have complex health needs, requiring intervention from more than one discipline to fulfill them. Thus, an interprofessional collaborative approach is likely to enable health professionals to share their expertise and perspectives toward achieving the common goal of restoring patients' health and improving health outcomes. A multisectoral approach, through a team comprising a nutritionist, a speech therapist, and a psychologist, is of utmost importance for providing these patients the best care possible. Public health dentists could be the key professionals who are in a position to drive such initiatives, as they possess the knowledge and skills required to enable effective interprofessional collaboration and improve health outcomes.
Suggestions for future work
Future studies can be aimed at understanding the need for interdisciplinary collaboration to help patients facing the challenge of managing chronic and complex diseases. These studies can help in designing a protocol, which can be applied in hospitals, that leverages interprofessional collaboration for providing a better supportive environment for oral cancer patients.
The authors would like to thank Dr. B.S Manoranjitha and Dr. Tulasidhar Kaveri for their contribution for the preparation of transcripts. We are grateful to the staff from HCG MSR Centre of Oncology for their support to conduct the study.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patients have given their consent for their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
[Table 1], [Table 2]