|Year : 2017 | Volume
| Issue : 1 | Page : 78-83
Perceived Levels of Supportive Care Needs of the Patients with Oral Cancer in a Metropolitan City in South India – A Cross-Sectional Questionnaire-Based Study
L. Surya Chandra Varma1, Swathi Jahagirdar2, Md Shakeel Anjum3, P. Parthasarathi Reddy4, K.V.N.R Pratap5, V. Siva Kalyan Reddy6
1 Department of Public Health Dentistry, Senior Lecturer, Mamata Dental College, Khammam, Telangana, India
2 Department of Oral Pathology, Senior Resident, Osmania Dental College, Hyderabad, Telangana, India
3 Department of Public Health Dentistry, Professor, Sri Sai College of Dental Surgery, Vikarabad, Telangana, India
4 Department of Public Health Dentistry, Professor and Head, Sri Sai College of Dental Surgery, Vikarabad, Telangana, India
5 Department of Public Health Dentistry, Mamata Dental College, Khammam, Telangana, India
6 Department of Public Health Dentistry, Reader, Mamata Dental College, Khammam, Telangana, India
|Date of Web Publication||14-Mar-2017|
L. Surya Chandra Varma
Department of Public Health Dentistry, Mamata Dental College, Khammam - 507 002, Telangana
Source of Support: None, Conflict of Interest: None
Introduction: The patients with cancer experience a range of challenges that can be physical, mental, and psychological. Hence, proper supportive care needs should be provided to the patients with oral cancer during the postoperative period, which can have a great impact on them and their family caregivers. Aim: To assess the perceived levels of supportive care needs, namely psychological, interpersonal communication, patient support, health information, and physical needs, of the patients with oral cancer in a metropolitan city. Materials and Methods: A cross-sectional study was conducted. One hundred and twenty patients were recruited from various cancer hospitals’ inpatient wards in the city of Hyderabad. A questionnaire was used to assess the patients’ needs, including the Karnofsky’s Performance Status Index and Cancer Needs Questionnaire Short Form. Descriptive statistics were calculated. Regression analysis was performed to find the predictive factors of various needs domains of the patients, and P < 0.05 was considered statistically significant. Results: In general, the patients reported the highest level of supportive care needs in the “Psychological” domain among six needs domains, followed by interpersonal communication needs, patient support needs, health information needs, and physical needs. Factors significantly related to those supportive care needs across six domains were stage of the cancer when admitted, past treatment underwent, occupation, location of the cancer, duration of the treatment, and undergoing problems during the treatment. Conclusion: Needs that were considered to be more important by the patients were the psychological needs and interpersonal communication needs, especially in the period within which they are being treated and when undergoing tests to determine the stage of the cancer. Routine screening for psychological and physical distress should become a first step in the assessment of the psychosocial needs of people receiving inpatient treatment for the cancer.
Keywords: Cancer, needs, oral cavity, patients, psychological
|How to cite this article:|
Varma LS, Jahagirdar S, Anjum MS, Reddy PP, Pratap K, Reddy VS. Perceived Levels of Supportive Care Needs of the Patients with Oral Cancer in a Metropolitan City in South India – A Cross-Sectional Questionnaire-Based Study. J Indian Assoc Public Health Dent 2017;15:78-83
|How to cite this URL:|
Varma LS, Jahagirdar S, Anjum MS, Reddy PP, Pratap K, Reddy VS. Perceived Levels of Supportive Care Needs of the Patients with Oral Cancer in a Metropolitan City in South India – A Cross-Sectional Questionnaire-Based Study. J Indian Assoc Public Health Dent [serial online] 2017 [cited 2021 Jun 13];15:78-83. Available from: https://www.jiaphd.org/text.asp?2017/15/1/78/201933
| Introduction|| |
Cancer is the second most common cause of morbidity and mortality in the world today after cardiovascular problems. Six million people die due to cancer every year, two-third of which occurs in developing countries such as India. In south Asia, oral cancers account for up to 40% of all cancers. Oropharyngeal cancer is a significant part of the global burden of cancer. The Indian subcontinent accounts for one-third of the world burden. Head and neck cancers account for one-fourth of all cancers in Indian males. In the West, the cancer of the tongue and floor of the mouth is common, whereas in the Indian subcontinent, the cancers of the gingival and the buccal mucosa are common due to placement of tobacco quid in the oral cavity. This cancer of the gingivo-buccal complex is termed as Indian oral cancer (Oral Cancer Prevention and Research Foundation, India).
The patients with cancer experience a range of challenges that can encompass psychological distress, difficulties communicating with health providers, family, and friends obtaining the required health information, physical changes in body functioning and appearance, sexual dysfunction, and disruption to family functioning and occupation. These challenges are exacerbated as the disease progresses. Moreover, there can be vast variations in the prognosis of individuals with advanced disease. The length of survival time between different disease types can vary from expectation of years, such as for locally advanced prostate cancer, to an expectation of a few months, such as for metastasized small cell lung cancer. These factors have implications for the types of psychosocial or supportive care interventions that will be effective in ameliorating suffering. In medicine (oncology and other fields), performance status is an attempt to quantify the general well-being of the patients with cancer and their activities in daily life. This measure is used to determine whether they can receive chemotherapy, whether dose adjustment is necessary, and as a measure for the required intensity of palliative care.
Supportive care is an umbrella term used to refer to services which may be required by those affected by cancer. It includes self-help and support, information, psychological support, symptom control, social support, rehabilitation, spiritual support, palliative care, and bereavement care. Supportive care in cancer refers to physical needs, psychological needs, interpersonal communication needs, information needs, and patient support needs.
All members of the multidisciplinary team have a role in the provision of supportive care. In addition, support from family, friends, support groups, volunteers, and other community-based organizations make an important contribution to supportive care. Therefore, to estimate the supportive care needs of the patients, the Cancer Needs Questionnaire Short Form (CNQ-SF) was developed by the Centre for Health Research and Psycho-Oncology.
The patients with oral cancer report multiple supportive care needs and, as a result, are dependent on their families for daily living care during the acute postoperative period. There is relatively little research investigating supportive care needs for people with oral cancer. So this study was conducted with an aim to assess the supportive care needs of the patients with oral cancer. The objectives of the study were to assess the patients’ perceived levels of supportive care needs and to assess the predictive factors of various supportive need domains of the patients.
| Materials and Methods|| |
A descriptive cross-sectional survey was conducted on the patients suffering from cancer of oral cavity admitted in the cancer hospitals in Hyderabad from May to June 2016. The ethical clearance was taken from the Institutional Review Board. Permission from the concerned authorities of the three hospitals was taken to collect the information from the patients with oral cancer and their caregivers.
A list of cancer hospitals in the city of Hyderabad was obtained from the district medical health officer. There are around 20 hospitals treating cancer in the city of Hyderabad. Among these, only those hospitals, which mainly treat the oral cancer, were selected. Of these 20 hospitals, only three hospitals granted permission to collect information from the patients. The patients admitted in these three hospitals with oral cancer for a period of 2 months and who were undergoing treatment for at least 2 months were included.
A pilot study was conducted on a sample of 30 patients in three cancer hospitals to check the feasibility of the survey and to check the reliability of the translated questionnaire. The questionnaire was given to the 30 patients to check its internal consistency (Cronbach’s α = 0.85). The content validity was assessed with the panel of experts. This pilot study also helped in exacting the pre-designed proforma and to make modifications wherever necessary to design the final proforma. The patients in the pilot study were not included in the final study. The final sample size, which was collected in the 2 months of duration, was 120.
A predesigned proforma was used for the patients. The proforma consisted of two parts (Part A and Part B). Part A consisted of demographic data, which included age, gender, occupation, per capita income, type of family, number of children, and functional status. Part B consisted of supportive care needs required for the patients with cancer using CNQ-SF.
Functional status of the patients was measured by the Karnofsky’s Performance Status (KPS) Index. The KPS Index is an 11-point scale with scores ranging from normal function (100%) to death (0%). The CNQ-SF contains five domains of care needs including (1) psychological needs, (2) health information needs, (3) physical and daily living need, (4) patient care and support needs, and (5) interpersonal communication needs. The CNQ-SF is a 5-point Likert scale, ranking from 1 to 5, with 1 representing “strongly agree” and 5 representing “strongly disagree.”
Data collection was performed over a period of 2 months by an interview method by the examiner himself on the patients suffering from cancer of oral cavity who were admitted in the cancer hospitals in Hyderabad.
Data were entered into Microsoft excel sheet and was subjected to analysis using the Statistical Package for Social Sciences software, version 21 (International Business Machines (IBM) Corp, released 2012, IBM SPSS, statistics for windows, version 21, Armonk, NY, USA). Descriptive statistics were calculated. Regression analysis was performed to find the predictive factors of various needs domains of the patients, and P < 0.05 was considered statistically significant.
| Results|| |
[Table 1] shows a total of 120 patients with oral cancer, of which, 90 were men and majority of the patients (55%) were between the ages of 40 and 64 years. 76.6% of the patients were uneducated. About 91.6% of the patients had their income below 40,000 per annum.
[Table 2] shows the disease characteristics of the patients with oral cancer, among which nearly three-fourth of the patients were in cancer stage I (74.0%). The most common sites of cancers were the buccal mucosa (35.8%), and the majority of the patients were undergoing treatment for the past 6 months (95.0%).
[Table 3] shows that about 56.6% of the patients were having pain and burning sensation and difficulty to swallow as their major symptoms after they underwent chemotherapy treatment. [Table 4] shows that majority of the patients had mild performance status (KPS Index range, 80).
|Table 4: Functional status of the patients based on Karnofsky’s Performance Status|
Click here to view
[Table 5] shows the perceived levels of patient care needs of various domains, in which majority of the patients (98.3%) agreed that they had psychological and emotional issues followed by interpersonal communication needs, patient support needs, health information needs, and physical needs.
[Table 6] shows various patient predicted reports of needs for each of the six domains using regression analysis. Two variables, namely stage of the cancer when admitted and past treatment underwent, were identified as significant predictors reporting supportive needs in the functional status domain. Two variables, namely occupation and location of the cancer, were identified as significant predictors reporting supportive needs in the physical status domain. Two variables, namely duration of the treatment and undergoing problems in the phase of the treatment, were identified as significant predictors reporting supportive needs in the health information needs domain. Majorly, there were no variables identified as significant predictors reporting supportive needs in the psychological domain, support needs domain, and the interpersonal communication needs domain of the patients.
|Table 6: Significant predictors related to various domains of the patients’ supportive care needs|
Click here to view
| Discussion|| |
If we have to give a brief thought on oral cancer, the physical, psychological, and financial burden on the patient and his/her caregivers is much more devastating than the monitory implications. The person who had oral cancer and has been operated will be ambulatory, weak, on a dose of chemotherapy/radiotherapy, under huge psychological stress, out of work, and confined to hospital room and later may be for few months or weeks confined to house. This further might affect his finances as he is out of work and also might affect his caregivers too as their profession is also disturbed to a certain extent still more in the financial burden. Integrating cancer experience is not merely a matter of adjusting to a sick role but also to formulate a new or different self-formulation, which is a difficult task.
In the present study, the patients with oral cancer perceived higher levels of psychological stress. The top three ranked supportive care needs were psychological needs, health system information, and patient physical needs.
The levels of supportive care needs found were mostly consistent with previous similar studies conducted by Chen et al.; however, health information needs occupied the top rank followed by the psychological needs in the study, mainly because they felt that the patients require an extended amount of time recovering from their surgery and would therefore like to be aware of and understand the information related to their treatment plans.
Negative emotions such as impact, anxiety, and depression are experienced by the patients with oral cancer due to discomfort and stress faced by them. In addition, there is a relatively short time between diagnosis and making treatment decisions and receiving surgery, and the patients may experience huge stress levels under these circumstances. The patients are at high stress during the treatment period and in the post-treatment period too. Therefore, it is very important for healthcare professionals and the family caregivers to focus on the patients’ psychological needs before and after the treatment.
Our findings with 98.3% of the patients having psychological needs as their primary unmet need was similar to the findings in a study conducted by Sanson-Fisher et al., suggesting that psychological needs were the most unmet need of the patients followed by health system information and physical needs.
According to Clark et al., nearly two-third of the inpatient respondents reported high levels of psychological distress that were not only within the clinically significant range but also at a rate that was nearly double that found in the outpatient distress screening studies that have been conducted to date. The psychological distress in the present study was similar to the findings of the Clark et al. Our results support the notion that routine screening for psychological and physical distress should become a first step in the assessment of the psychosocial needs of people receiving inpatient treatment for cancer.
Next to the psychological needs are the interpersonal communication needs of the patients. Nurses need to communicate effectively with the patients and the caregivers to achieve positive client outcomes. Communication is crucial across settings. The emergency room and hospital discharge planning processes, assisted living facility admission process, skilled nursing facility discharge process, and the home health care admission and discharge process are all critical points of interaction where the health care professionals, the patients, and the family caregivers can benefit from respectful, high-quality communication. In the managed care environment, providing concrete care information along with emotional support can help spouses of frail older adults better manage their caregiving situation.
About 32.43% of the patients were not able to communicate properly with the formal caregivers in the hospitals; these were similar to the findings in the study conducted by Lena, wherein communication between a palliative home care team and a caring family was a means of building trusting relations as a base for support to the patient and his family. The trust was communicated through flexibility in the care on a structural and on an individual level, continuity in the care, and empowerment of the family.
Zebrack et al. described that support from family and friends was the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends, older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one’s own health care and decision-making. The results in the present study were quite opposite to the study conducted by Zebrack et al. stating that their family caregivers were providing enough care to them when required, and only a small fraction, that is, about 11.6% of the patients felt that their caregivers were not taking care of them properly.
Fatigue, nausea, appetite loss, and vomiting were the most commonly experienced and most debilitating physical symptoms. These were similar to the results of a study conducted by Newell et al. Although relatively low levels of perceived needs were reported, physical and psychological needs were the most common. Levels of each outcome measure tended to be predictive of each other. In the present study, about 52.5% of the patients had pain, burning sensation, difficulty to swallow, fatigue, nausea, and vomiting as their major physical discomfort symptoms. These physical symptoms were similar to the findings in the study conducted by Smith et al., where approximately 70–80% of the patients treated with chemotherapy experienced nausea and vomiting, which may be acute (occurring within a few hours after chemotherapy), delayed (occurring 24 or more hours after chemotherapy), breakthrough or refractory (occurring despite prophylactic treatment), or anticipatory (occurring before chemotherapy treatment). In spite of these debilitating symptoms, about 90.8% of the patients were able to carry on their daily physical activities without any problem.
The patient’s performance status can predict family caregivers self-esteem burden related to caregiving. Our study found that the patients with oral cancer had high levels of physical performance that typically does not require bed rest. Thus, there is no need for the caregivers to provide more daily living tasks for the patients.
Generalizability of the study findings is limited mainly because this study included only three hospitals and represented only a minor fraction of the people; so to overcome this problem, future researchers may expand recruitment from different hospitals to better represent a cross-section of the state population.
We suggest that future studies could further investigate changes in the supportive care needs observed in the diagnostic, the treatment, and the recovery stages to provide a reference for interventions. Prospective longitudinal design may be required to clearly elucidate the trajectories of the patients’ needs at acute postoperative and recovery period. Larger sample size is required to predict the factors responsible for support needs of the patients. Healthcare professionals should be able to assess the possible workload behavior and perform a supportive role, including providing training in caregiving skills, respite services, reconstructing the social network, and developing hospital discharge programs during the postoperative period.
The clinical implications of the study are that, in the delivery of clinical care, healthcare professionals should focus on providing training for the patients’ postoperative coping strategies, including camouflage makeup, counseling interviews, and seeking social resources.
| Conclusion|| |
In this study, we assessed the supportive care needs of the patients with oral cancer and the predictive factors of various supportive care need domains of the patients. The results demonstrated that the patients with oral cancer perceived levels of psychological stress followed by health information and physical needs. The main reason for psychological stress might be the short time between diagnosis and making treatment decisions and receiving treatment followed by extended time to recover from the same. In clinical care for the patients with oral cancer, a comprehensive evaluation of the patients’ postoperative supportive care needs and providing sufficient social resources are both necessary to improve the quality of health care and to reduce the psychological stress among them.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Khan Z. An overview of oral cancer in Indian subcontinent and recommendations to decrease its incidence. WebmedCentral Cancer 2012;3:1-29.
Warnakulasuriya S. Global epidemiology of oral and oropharyngeal cancer. Oral Oncol 2009;45:309-16.
Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. J Pain Symptom Manage 2003;26:922-53.
Chen SC, Tsai MC, Liu CL, Yu WP, Liao CT, Chang JT. Support needs of patients with oral cancer and burden to their family caregivers. Cancer Nurs2009;32:473-81.
Cossich T, Schofield P, McLachlan SA. Validation of the cancer needs questionnaire (CNQ) short-form version in an ambulatory cancer setting. Qual Life Res 2004;13:1225-33.
Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Cancer 2000;88:226-37.
Clark PG, Rochon E, Brethwaite D, Edmiston KK. Screening for psychological and physical distress in a cancer inpatient treatment setting: A pilot study. Psychooncology 2011;6:664-8.
Reinhard SC, Given B, Petlick NH, Bemis A. Supporting Family Caregivers in Providing Care. Patient Safety and Quality: An Evidence-Based Handbook for Nurses. Rockville, MD: Agency for Health Care Research and Quality; 2008. [Chapter 14].
Lena H. Communication in action between family caregivers and a palliative home care team. J Hosp Palliat Nurs 2006;8:276-87.
Zebrack BJ, Mills J, Weitzman TS. Health and supportive care needs of young adult cancer patients and survivors. J Cancer Surviv 2007;1:137-45.
Newell S, Sanson-Fisher RW, Girgis A, Ackland S. The physical and psycho-social experiences of patients attending an outpatient medical oncology department: A cross-sectional study. Eur J Cancer Care 1999;8:73-82.
Smith GF, Toonen TR. Primary care of the patient with cancer. Am Fam Physician 2007;75:1207-14.
[Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]