|Year : 2017 | Volume
| Issue : 4 | Page : 327-333
Health-related quality of life and the perceived palliative care needs among oral cancer patients
CV Deepan Kumar1, Joe Joseph1, Chandrashekar Janakiram1, Mohan Gopinath2
1 Department of Public Health Dentistry, Amrita School of Dentistry, Amrita University, Cochin, India
2 Department of Pain and Palliative, Government General Hospital, Ernakulam, Kerala, India
|Date of Web Publication||13-Dec-2017|
Dr. Chandrashekar Janakiram
Department of Public Health Dentistry, Amrita School of Dentistry, Amrita University, Edapally, Cochin, Kerala
Source of Support: None, Conflict of Interest: None
Introduction: Survival rate is the only outcome measure for cancer management which fails to recognize the impact of on health-related quality of life (HRQoL). Optimizing QoL before a timely, dignified, and peaceful death is the primary aim of good palliative care. Aim: The aim of this study is to assess the HRQoL of oral cancer patients and explore whether there is a need for professional palliative services to focus on social, psychological, and spiritual well-being. Materials and Methods: A mixed methodological approach was adopted. A validated closed-ended questionnaire was used to assess the HRQoL, and in-depth interviews were conducted to assess the palliative care needs. The study encompassed of 876 participants, among which 317 consented for administration of questionnaire and 12 participants consented for interview. Karl Pearson's coefficient test was used to find the association between the well-being score and demographic factors. Results: The general well-being of these patients was compromised. Elderly participants experienced bad (31%) general well-being. Semi-skilled (7%) and unskilled workers (5%) experienced bad general well-being while unemployed (13%) and retired (13%) experienced good general well-being in majority. Conclusions: HRQoLs are low in oral cancer patients, and early referral for palliative care might increase the QoL.
Keywords: Oral cancer, qualitative research, quality of life, spiritual coping, well-being
|How to cite this article:|
Deepan Kumar C V, Joseph J, Janakiram C, Gopinath M. Health-related quality of life and the perceived palliative care needs among oral cancer patients. J Indian Assoc Public Health Dent 2017;15:327-33
|How to cite this URL:|
Deepan Kumar C V, Joseph J, Janakiram C, Gopinath M. Health-related quality of life and the perceived palliative care needs among oral cancer patients. J Indian Assoc Public Health Dent [serial online] 2017 [cited 2020 Feb 28];15:327-33. Available from: http://www.jiaphd.org/text.asp?2017/15/4/327/220712
| Introduction|| |
Oral cancers account for over 30% of all cancers in India, and nearly 50% of oral cancer patients have metastatic stage at the time of diagnosis (regional nodal involvement in 43% and distant metastasis in 10%). Palliative therapy is initiated when the invasive therapy becomes futile, thereby aiming at improving the quality of life (QoL). Hence, a terminally ill patient is confronted with prognosis and survival from the cancers.
A realistic dialog about the illness trajectory between patient, family, and professionals can facilitate supportive care to be initiated earlier, focusing on improvement of QoL and relief of symptoms. Recognizing the patient's difficulties, including symptoms of the progressive disease, psychological distress, social stigma, and spiritual need may allow practical planning for a “good death.” An outlook on death and expectations that are more acquiescent to reality may moderate the “technological imperative” preventing unnecessary admissions to hospital or aggressive treatments.
QoL has been defined as the degree to which a person enjoys the important possibilities of life “oral disease can affect the QoL., It is possible that social, psychological, and spiritual levels of distress may also follow characteristic patterns. The understanding of the total lived experience and the interdependence of body, mind, and spirit which underlies human suffering is important for instituting good ethical palliative care to these patients. Qualities such as awe, meaning of life, faith, and connection to a spiritual being make significant contribution to the overall rating of QoL, above and beyond that of psychological well-being or social connection.
Oral health status can influence people physically and psychologically, as well as how they enjoy life, how they look, speak, chew and taste food, and socialize. Nearly one-third of cancers in are oral lesions in India., As there were no studies reported in literature, we this study designed to assess the palliative care needs along with health-related QoL (HRQoL) assessment in oral cancer patients in India. The objectives of the study were to assess the HRQoL of oral cancer patients and the need for professional palliative services such as social, psychological, and spiritual well-being for people diagnosed with oral cancer in Kerala, India.
| Materials and Methods|| |
The study was conducted in two tertiary care hospitals in Ernakulam, Kerala and Government General Hospital using a mixed methodology approach inclusive of both quantitative and qualitative components. The Institutional Ethical Committee approved the study. The ethical elements of research confirm the full accordance with the World Medical Association, Declaration of Helsinki, and written informed consent was obtained from the willing study participants which was duly approved by the institutional review board. Training was provided to the interviewers regarding the study and approach.
The sample size 291 was estimated with expected frequency of occurrence of good HRQoL being around 22% and relative frequency of 29% with 5% confidence limits and 80% power. Since the qualitative component of this research was exploratory, sample size was based on data saturation that is sampling to the point at which no new information is obtained and redundancy is achieved.
The study participants were selected from the inpatient and outpatient units of departments of oncology and palliative care. The patients above the age of 25 years and diagnosed any type of oral cancer irrespective of the site and stage of involvement were included in the study. The 876 participants were contacted, out of whom only 317 consented for the study and 12 participants for in-depth interview. Patients and attendees were encouraged for focused group discussion, which was audio recorded using Sony IC recorder (ICD-PX333).
Assessment of HRQoL is by questionnaire and in-depth interviews were used to assess the perceived palliative care needs of oral cancer patients. The QoL was assessed using validated (in local language) structured questionnaire covering major domains such as physical, functional, and social, psychological, emotional, and spiritual dimension. The questionnaire was adapted from the Functional Assessment of Chronic Illness Therapy system of QoL questionnaires (FACT H&N, version 4), licensed from David Cella. The core questionnaire consisted of 39 questions (items) exploring five multi-item functional scales (physical function, function, social function, emotional function, and overall health status/QoL). Each domain consisted of certain set of questions relevant to the domain. Each question had response range from “not at all” to “very much,” with relevant score of 0–4.
The statistical analysis of the data was done using Statistical Package for the Social Sciences (SPSS, IBM) version 19 and tested for statistical significance using Chi-square statistics for the data pertaining to the primary objective. A deductive approach was used to analyze the qualitative data. The data were managed “by hand.” The 12 in-depth interviews, which were audio recorded, were then scripted to the regional language. Later, they were translated into English and were checked for content validity using back-translation method with the help of assistants who were proficient in the regional language. One interview was excluded from the analysis since it was not an in-depth interview.
| Results|| |
[Table 1] enumerates the demographic characteristics of the study population. One-third of the participants were survivors having metastatic (33·8%) malignancy, and a small proportion (5·4%) of them survived initial stage (Stage I) of malignancy. The study participants had undergone surgical (95·3%), chemotherapy (89%), and radiotherapy (84·9%) treatment for the malignancy. Only 15·5% had received palliative therapy.
The mean scores of each well-being domain are given in [Table 2]. This includes physical, social, emotional, functional, and head and neck (HN) cancer subscale (additional concerns such as ability to eat, swallow, breath, appearance, pain, and others) and index which used combination of domains such as FACT-H and N trial outcome index (FACT-H and N TOI), FACT-general (FACT-G), and FACT-H and N total score. The FACT-TOI (includes physical, functional, and H and N cancer subscale) had a mean score of 50·15 ± 9·16, with the highest scores of 89 and the lowest scores of 33. The FACT-G 54·97 ± 10·89 and FACT-total score 74·54 ± 12·16 had almost similar scores, as in FACT-H and N (TOI) index.
|Table 2: Mean scores for specific domains and for index of combined domains|
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FACT-G index is the total score of physical, social, emotional, and functional well-being. Participants aged 70 years and above experienced bad (30·9%) general well-being (P = −0.075). Semi-skilled (6·9%) and unskilled workers (5·0%) experienced only bad general well-being while unemployed (13·2%) and retired (12·9%) experienced good general well-being (P = 0.303). Oral cancer survivors with religious belief of Hinduism (24·6%) and Christianity (14·5%) experienced good general well-being (P = 0.047). Those participants who survived Stage II (21·5%) experienced bad general well-being. Stage III (19·9%) and Stage IV (18·3%) participants had experienced good general well-being (P = 0.194). The good (48·6%) and bad (46·7%) well-being for the participants who underwent surgery were almost similar (P = −0.217). The general well-being was bad for those participants who underwent chemotherapy (47·9%) (P = 0.141) and radiation therapy (47·95) (P = 0.241). Majority of the participants who had not received palliative therapy had bad general well-being (P = −0.038).
The H&N total well-being of participant's index includes all domains such as physical, emotional, psychological, social, and additional questions related to the patient's well-being. Older participants had experienced poor (34·4%) total well-being (p=-0.080). Males were observed to have badly (44·8%) experiences on total well-being (P = 0.043). Majority of the participants experienced bad total well-being irrespective of their occupation status (P = 0.043). Muslims experienced good (24·3%) total well-being while Hindus and Christians experienced bad total well-being (P = 0.073). Majority of the participants who underwent surgery (53·9%) (P = −0.187), chemotherapy (53·3%) (P = 0.072), and radiation therapy (53·3%) (P = 0.2) had experienced bad total well-being. Those participants who were not exposed to palliative care had experienced bad (46·7%) (P = 0.164) total well-being [Table 3].
[Table 4] depicts the correlation between well-being (HRQoL) with respect to the demographic characteristics and clinical profile of the oral cancer patients. About 16·4% of the total well-being improved as the patient received palliative care, and 20% improvement was observed when radiation therapy was given, where staging also had statistically significant improvement by 19%.
|Table 4: Significance of well-being among oral cancer patients (correlation r value)|
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The qualitative analysis included 12 participants who consented for the in-depth interview, out of which 11 were analyzed. The sex ratio of the participants who consented for the interview was 2:3, with majority being unemployed or retired from service. The palliative care focusing on four major domains was identified and analyzed.
The physical distress attributed to three major issues perceived by the participants of the study as shown in [Table 5]. The three major issues concerning the patients were difficult to swallow food, nourishment, and impaired taste perception; pain due to tumor/ulceration; and posttreatment complication (i.e., edema, hair loss, and tiredness).
|Table 5: Qualitative assessment of physical, psychosocial, and emotional distress|
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The emotional distress was perceived to be largely focused on the fear of treatment and complication experienced due to extensive curative care (radiotherapy and chemotherapy specifically) and psychosocial distress or crisis that had emerged within the family and among their social circles. The psychosocial distress was perceived to be related to doubts about the future status of their families, being isolated in society, empathy being shown by well-wishers, and being victimized for the crisis in the family [Table 5]. The spiritual domain was assessed based on factors such as participant's perceived spiritual distress, strength, and support. Christians were found to have relatively better spiritual support than Hindus. The perceived spiritual need or support required from palliative care is listed in [Table 6].
|Table 6: Qualitative assessment of emotional and spiritual distress and well-being|
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| Discussion|| |
Oral cancers are managed with various strategies such as surgery, chemotherapy, and radiotherapy. However, it often results in either disability of survivors or death. This disability has been perceived as an outcome of this strategically intervened curative therapy better known as HRQoL. It was observed from past that there is a vast difference between good and bad QoL. The primary objective of this research was aimed at assessing the HRQoL of oral cancer patients undergoing curative therapy.
In the present stage, the physical well-being was found to be better in older patients, and this finding was similar to the studies conducted earlier.,, Patients under the age of 65 years had significantly poor QoL with respect to physical functioning. The physical function was much better at the time of diagnosis, but later people succumbed to it. Few participants in the interview also expressed their physical inabilities such as difficulty to swallow food, nourishment, speech, and impaired taste perception, pain due to tumor/ulceration, and posttreatment complication (i.e., edema, hair loss, and tiredness).
The emotional well-being of participants who underwent surgical therapy (71%), chemotherapy (71·6%), and radiation (67·5%) was very bad. The bad emotional state could be attributed to the fear of recurrence for being emotionally disturbed. Fear of complications of the treatment was also another reason for disturbed emotional well-being. One participant in the interview also expressed her fear as “I refused to go (hospital) as I was afraid of the painful procedures. I became very ill. After taking treatment, a lump appeared and it began to slowly increase in size.” However, a study showed contradictory observations wherein emotional well-being was found to improve after surgical care and radiotherapy.
The functional well-being of elderly patients was good which was similar to the other study. However, it was observed that high QoL score at time of diagnosis and high pain symptom score were significantly associated with better survival. Few participants in the interview also expressed functional distress because of the pain due to tumor/ulceration. Radiation therapy was considered to be a trigger for functional limitations and emotional distress that contributes to decreased HRQoL in patients with HN cancer.
The general well-being (FACT-G) of the employed patients was low (QoL) due to regular interaction with the public or colleagues at their working environment that could have possibly contributed. One of the unemployed respondents during qualitative assessment revealed that she feels comfortable and relaxed as she had no responsibilities. The general well-being of the cancer patients was bad in both sexes which were similar to the other study. The QoL of older people was found to better than the younger generation. The present study shows that older patients seem to cope and adjust well to treatment which was reflected in their HRQoL scores. Having palliative care referrals toward the later stages of treatment had minimal effect on the disease prognosis and having worst HRQoL.
The present study did not show any conclusive evidence for better QoL score with the traditional concept of delayed palliative care referral. However, one of the respondents in qualitative assessment had expressed that “The doctor referred me for palliative chemo later, he said that I would feel tired, but I didn't have any vomiting or any other problems. I received all the medicines and care from palliative care.” This possibly indicates that early palliative care referral integrated with standard oncologic care could increase quality of “end of life” care. Earlier study done on metastatic nonsmall cell lung cancer and other chronic disease (specify) was suggestive of intervention of palliative care at the earliest (at the time of diagnosis of malignancy) rather than providing it at a stage where the curative treatment is forlorn.
The participants were ignorant on the importance of spiritual dimensions, and some were wished to pursue with positive hope, especially with who followed Christian faith. However, it was seen that there is a need to channelize the support system for effective palliative care and impart spiritual wisdom. The participants who were employed had badly affected (30.2%) QoL (psychosocial) when compared to those who were unemployed or retired due to social isolation. Providing social support, for the patient and close relatives, would be an important target for psychosocial intervention. Introduction of this intervention at an early phase much ahead of the challenging treatment may improve the QoL during their survival.
The external validity of the overall QoL among oral cancer survivors including both quantitative and qualitative assessment is not possible as they are the perceived needs confined to people living under the shades of Kerala's system of Health-care delivery, culture, and values.
Elderly patients (aged 70 and above) showed better ability to cope for well-being scores than their younger counterparts. The well-being scores of the survivors' deteriorated as the disease progressed. Social isolation was found to be a major reason for poor coping against stress. Referral for palliative care at the earliest, no sooner from the time of diagnosis than delayed referral might serve the purpose of improving or maintaining the QoL among the oral cancer patients.
More mixed methodological research is required to assess the total lived experience by the cancer survivors both subjectively and objectively. This will fill the gap in knowledge for the palliators to provide effective palliative care for the survivors.
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Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]