|Year : 2021 | Volume
| Issue : 4 | Page : 172-179
Psychological burden on cancer patients and their caregivers during COVID-19 pandemic in India
Raj Nagarkar1, Roshankumar Patil2, Kavita Gadade3, Nishtha Paleja4, Rasika Bhamre5, Yasam Venkata Ramesh6
1 Department of Surgical Oncology, HCG Manavata Cancer Centre, Nashik, Maharashtra, India
2 Department of Radiation Oncology, HCG Manavata Cancer Centre, Nashik, Maharashtra, India
3 Department of Psycho-Oncology, HCG Manavata Cancer Centre, Nashik, Maharashtra, India
4 Department of Medical Research, HCG Manavata Cancer Centre, Nashik, Maharashtra, India
5 Department of Medicine, Seth GS Medical College and KEM Hospital, Mumbai, Maharashtra, India
6 Department of Academics, HCG Manavata Cancer Centre, Nashik, Maharashtra, India
|Date of Submission||04-Mar-2021|
|Date of Decision||13-Jul-2021|
|Date of Acceptance||20-Aug-2021|
|Date of Web Publication||21-Dec-2021|
M.S Raj Nagarkar
Nashik 422011, Maharashtra
Source of Support: None, Conflict of Interest: None
Objective: Psychological burden is a serious issue facing by the cancer patients and their caregivers (CGs) around the world during the pandemic situations such as COVID-19. In the present study, we assessed the psychological burden on cancer patients and their CGs during this COVID-19 pandemic. Methods: The study was done using standardized questionnaire of the most validated scales - perceived stress scale and the caregiver strain index. Results: A total of 334 patients and 257 CGs participated in the present study. Majority of the patients experienced moderate to high level of stress (n = 239 [72%]), while CGs experienced a high level of strain (n = 132 [52%]). In the patient's cohort, stress was dependent significantly on education (p < 0.01), gender (p < 0.05), on active treatment (p < 0.001), and surgery (p < 0.05). Among CGs, strain was significantly affected by less education CGs (p < 0.001), patients more on active treatment (p < 0.01), and more primary gastrointestinal tumors (p < 0.01). From multivariate analysis of pandemic-specific factors, difficulty in transportation (p < 0.01) and increased financial burden (p < 0.05) were found to be significant influencing factors affecting the stress level of patients. Conclusion: To overcome the psychological burden due to lockdown, we suggest the initiation of psychosocial caring in all the necessary patients and their CGs to demonstrate its benefits in the long term.
Keywords: caregiver strain index, cross-sectional study, perceived stress scale, psychosocial caring
|How to cite this article:|
Nagarkar R, Patil R, Gadade K, Paleja N, Bhamre R, Ramesh YV. Psychological burden on cancer patients and their caregivers during COVID-19 pandemic in India. Taiwan J Psychiatry 2021;35:172-9
|How to cite this URL:|
Nagarkar R, Patil R, Gadade K, Paleja N, Bhamre R, Ramesh YV. Psychological burden on cancer patients and their caregivers during COVID-19 pandemic in India. Taiwan J Psychiatry [serial online] 2021 [cited 2022 May 29];35:172-9. Available from: http://www.e-tjp.org/text.asp?2021/35/4/172/332964
| Introduction|| |
In 2020, the number of new cancer cases and cancer deaths worldwide were estimated to be 19.3 million and 10 million, respectively . It is estimated that around 2.25 million people in India are living with cancer and around 0.78 million people are dying from it each year ,. The diagnosis and treatment of cancer not only bring a major change in the life of patients but also in their caregivers (CGs), affecting them psychologically. Studies from different countries have reported that around 35%–39% of patients diagnosed with various cancers have experienced clinically proven psychological distress due to their illness. The level of stress is highly variable and it is completely dependent on the type and stage of cancer, status of treatment, presence of metastatic or recurrent disease, and economic condition of the patient ,,. CGs of almost all cancer patients were reported to be emotionally and physically exhausted because of the burden caused by illness over their loved ones ,. Possible reasons for such exhaustion in CGs might be prolonged treatment periods, change in lifestyle due to irregular and intense periods of assistance, which wax and wane them over the course of treatment, leading them toward an increased risk of distress, psychological, and physical ailments ,. In addition, it was reported that CGs of cancer patients experience more amount of strain and stress than the CGs taking care of frail elderly or dementia patients . CGs have their own psychological needs, which have to be addressed for the maintenance of their own health and for the patient's well-being.
In December 2019, a novel coronavirus called severe acute respiratory syndrome coronavirus 2 (SAR-CoV-2) was emerged from Wuhan, China. On March 11, 2020, it was declared as a global pandemic by the World Health Organization . The complications associated with COVID-19 are acute respiratory distress syndrome, septic shock, and myocardial infarction. Such complications have been observed to be more likely in the elderly, personnel with preexisting comorbid conditions, and those with immunocompromized diseases such as cancer ,.
Although the available data remain limited, reports from various countries have confirmed the severe effects of COVID-19 as both contagious and deadly, especially in cancer patients. Cancer patients are more vulnerable to these infections with increased mortality rates ,,.
Along with concerns about COVID-19 and their susceptibility, cancer patients in India are also facing other challenges such as transportation, stay, delay in screening and diagnostic services, altering treatment schedules, de-prioritization of ongoing care, receiving suboptimal or delayed care, reduction in current therapy options, and suspension of clinical trials due to a two-month nationwide lockdown imposed by the government of India (phase I and II from March 5 to May 3, 2020) ,,,,. These changes during the pandemic not only affected cancer care, but also placed an additional psychological stress on cancer patients and their CGs ,.
To assess such psychological distress in cancer patients and their families/CGs during this global pandemic, we conducted a single-center cross-sectional study at a major cancer care center located in a classified red zone as per the government of India . To our knowledge, this is the first study to evaluate the psychological impact of this pandemic in both cancer patients and their CGs in India.
| Methods|| |
This was a single center, cross-sectional, observational study conducted at a major cancer center in India. The study was initiated after receiving all the necessary approvals from Institutional Ethics Committee of Manavata Clinical Research Institute, India, approved the study (protocol number = CADICO19/2020 and date of approval = May 8, 2020) with the need of obtaining signed written informed consent from all study participants. The study population consisted of eligible cancer patients coming to our center for treatment and their accompanying healthy CGs during the nationwide lockdown imposed by the government of India.
Study design and recruitment
Participants of this study were divided into two groups as cancer patients and CGs. The exclusion criteria of the study participants included age (≤18 years), history of any existing psychiatric comorbidities, and disoriented patients with brain primaries or metastasis.
This cross-sectional survey was done over a period of five months. The response rate to the survey from the patients and CGs group was 85% and 80%, respectively. On an average, each group took 12 ± 2 minutes to finish the survey.
The study was conducted using two sets of copies of standardized questionnaire of most validated scales - perceived stress scale (PSS) and caregiver strain index (CSI). These scales were previously used in many studies to identify study the stress and strain levels. Translation of copies of PSS and CSI questionnaire from English to Hindi was done by two independent experts (forward translation) for better understanding of patients and CGs. All initial translated versions were again back-translated by two other independent experts (backward translation) for quality and accuracy. After translation, a pilot test of the questionnaire was done in 10 patients. Based on the results, necessary changes were done where ever required and sent for institutional review board approval. After obtaining all the ethical approvals, the study was initiated using the final Hindi translated version.
Perceived stress scale
PSS is a 10-item questionnaire designed to measure the perception of stress . Of the 10 items, 6 items are focused on negative emotions (nervousness, helplessness, and negative mood) and 4 items are focused on positive emotions (confidence and ability). The response set was ranged from 0 (never) to 4 (very often). Questionnaire scores were calculated through reverse scoring the 4 positive items and by adding up the 6 negative item scores. In the end, the severity score of perceived stress was graded as low (0– 13), moderate (14–26), and high (27–40).
Caregiver strain index
CSI was a 10-item questionnaire used to identify CGs' burden, strain, and ability to provide care. It covers eight domains such as financial strain, upsetting changes in the patient, emotional adjustments, conflicting demands, change of plans, family adjustments, practical and work adjustment, and sleep disturbances. The items in the questionnaire are binary with a score of 1 for a “yes” and 0 for a “no,” with total score ranging from 0 to 13. In the end, scores ≥7 indicates poor quality of life and high level of strain .
Process and researchers
A total of 4 researchers and 6 assistant staff was involved in the present study. Based on the previous pandemic experiences, the present study was designed and executed. A
We used two-set questionnaire related to pandemic specific stress (PSS) and strain (CSI). Before the study initiation, formal training and practical workshops were conducted to familiarize the study purpose, study contents, and expected outcomes. Later, an online survey was created and made available to all the departments at our center. All the walk-in patients and their CGs were approached and explained about the study. Written informed consent was obtained from all the interested participants, and their data were obtained through self-reporting.
We used descriptive statistics for patient- and CGs-related characteristics. The scores of two scales were non-normally distributed and presented as number and percentages (n [%]). The potential risk factors, stress and strain of all the participants involved in this study were determined using Mann–Whitney U-test (for two categories), and Kruskal–Wallis test (for multiple categories). Univariate analysis was done for pandemic specific factors to study their effect on the mental stress of patients, whereas the independent pandemic specific prognostic factors were evaluated using multivariate logistic regression analysis.
We analyzed the statistical data with International Business Machine - Statistical Package for the Social Science software, version 22.0 for Windows (IBM Corp., Armonk, New York, USA). The differences between the group with odds ratio (OR) (95% confidence interval [95% CI]) were considered significant if p-values were smaller than 0.05.
| Results|| |
A total of 591 participants matched our inclusion criteria and participated in the survey. Of these, 334 (57%) were patients and 257 (43%) were CGs. [Table 1] shows the sociodemographic data of all those participants.
A significant reduction in number of patients on different treatments and diagnostic modalities was observed over a period of time. (January 1, 2020–March 31, 2020, to April 1, 2020–May 31, 2020). This pattern is possibly due to the nationwide lockdown and subsequent restrictions imposed due to the high increase in a number of COVID cases within a short period of time [Figure 1].
|Figure 1: Monthly number of cancer patients presented to our center against COVID-19 cases recorded in India during initial phases. Reduction of patients was quite noticeable in surgery (39%), radiotherapy (44%), and chemotherapy (28%), whereas patients receiving diagnostic modalities such as computed tomogramphy/magnetic resonance imagingand nuclear medicine scans have also shown a decrease in trend by 40% and 15%, respectively. Decrease in default rates was also observed to be increased exponentially in patients undergoing RT/CRT, from 7.5% (January 2020), 7.7 % (February 2020) to 30% (March 2020), 47% (April 2020), and 41% by the end of May 2020.|
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As shown in [Table 1], majority of the presented patients (57%) had primary cancers of head and neck region (HNC) (103 [31%]), breast (85 [26%]), radical (initiation of patient treatment to cure completely) (287 [86%]), and active treatment (258 [77%]).
According to PSS and CSI scoring, the majority of the patients experienced a moderate level of stress (PSS score 14–26; 214 [64%]), and CGs a high level of strain (CSI score ≥ 7; 132 [52%]) [Table 2].
|Table 2: Scores of perceived stress score for patients, caregiver strain index for caregivers, and pandemic-specific questions|
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In the patient's cohort [Table 3], more stress was observed in elder patients (≥ 60), female (p < 0.05), less educated patients (<secondary school; p < 0.01), breast cancer (p < 0.01) and GI cancer patients (p < 0.01), and patients on active treatment (p < 0.001). We also found that patients who received surgeries had significantly more stress (mean ± standard deviation [SD] = 19.6 ± 5.3, p < 0.05), compared to patients who received radiation (mean ± SD = 18.2 ± 4.5), or chemotherapy as treatment (mean ± SD = 17.4 ± 6.5, p < 0.05).
|Table 3: Factors affecting symptoms of stress/strain in patients and caregivers (Mann-Whitney U test for two categories/Kruskal-Wallis test for multiple categories)|
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The CGs of patients with active treatment (p < 0.01) and with gastrointestinal cancers (GIT; p < 0.01) and primary brain tumors (p < 0.01) experienced a higher level of strain compared to other primaries [Table 3]. CGs of patients undergoing surgery (Mean ± SD = 7.6 ± 3.5, p < 0.001) and radiation (mean ± SD = 7.5 ± 3.5, p < 0.001) experienced more stress compared to the CGs of patients who were on chemotherapy [Table 3]. We observed a significant high level of strain in parental CGs (mean = 8.12; [IQR = 2–12]; p < 0.05) as compared to spousal CGs (mean = 6.26; [IQR = 1–12]) or other relations (mean = 6.03; [IQR = 0–12]).
As shown in [Table 4], problems associated with during pandemic and lockdown such as transport issues (mean ± SD = 20.90 ± 3.4, p <0.05), default in the treatment (mean ± SD = 20.65 ± 2.8, p < 0.05), was increased in financial burden (mean ± SD = 18.92 ± 3.1, p < 0.001), and lack of social support (mean ± SD = 20.21 ± 3.3, p < 0.001) showed significantly more impact on the stress level of patients. More default rates were also seen during the treatment period in the patients who had significantly more stress (p < 0.01).
|Table 4: Issues due to pandemic or lockdown (n = 334) and their impact on stress level of patients (perceived stress scale)|
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From multivariate analysis of pandemic specific prognostic factors affecting the stress level of patients, transport issue stress (odds ratio [95% CI], 0.27 [0.11–0.68]; p < 0.01), and increased financial burden (OR [95% CI], 0.59 [0.34–0.99]; p < 0.05) were found to be significant independent factors [Table 5].
|Table 5: Multivariate analysis of pandemic-specific factors affecting stress level of patients|
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| Discussion|| |
Stress is a normal response to environmental or internal perturbations and can be considered adaptive in nature. Distress occurs when stress is severe, prolonged, or both . In life-threatening diseases such as cancer and psychological disturbances are common phenomenon affecting cancer patients and their CGs both physically and emotionally . Studies have reported remarkable psychological distress in cancer patients with a prevalence of 35.1%  to 37.8% .
In the present study, patients stress and CGs strain were evaluated during the COVID19 crisis in India. COVID-19 showed a significant impact on day-to-day activities due to the strict rules and regulations laid by governments around the world to curb its further spread. This study was conducted at a major cancer center in India located in the classified red zone by the government of India .
Defaulted rate and reduction in patient number
Results from [Figure 1] clearly depict a significant reduction in the number of cancer patients who underwent surgery, radiotherapy, chemotherapy, and diagnosis during the pandemic in India. The percentage reduction during these months (March to May) in patients in-flow to the hospital may be due to the fear of getting hospital-related infections, complex travel restrictions, disruptions in public transport, regulations laid by hospitals to avoid overcrowding, and financial fallout due to lockdown. The triage system was implemented and telemedicine was initiated. New clinical interaction methods such as helpline numbers, outpatient departments, and online availability of consultants all the time worked out really well and helped in avoiding repercussions in the patients and CGs ,,,,,. In severe cases, remote cancer care was also provided to address emergency situations .
Level of stress
From our study results, a moderate to high level of stress was evident in our patients and their CGs [Table 2]. This level of distress might be due to inherent stress associated with cancer along with fear of getting hospital-acquired COVID19 infection, the psychological burden due to home-confinement, sense of loneliness, facing unfamiliar situations, fear of loss, coping with the situation, fear of defaulting treatment, concerns about the future, and lack of social support ,,. Pandemic and its associated nationwide lockdown has also led to increased financial burden and lack of social support, which in turn increased the stress level of patients [Table 4] and [Table 5] ,,.
Even though cancer treatments are advancing over time, the psychological stress in cancer patients and their CGs was observed to be the same [Table 2] ,. To overcome such situations, we suggest initiation of psychosocial caring and possible interventions in all the necessary cases that benefits in the long term. Initiation of psychological education, psychosocial support, and empathetic understanding with motivational enhancement sessions can help spread positivity during these testing times. Many studies have demonstrated the benefits of psychosocial care without any increase in treatment costs, which have also helped decrease the overall treatment costs by 25% ,,,. Such interventions can play a vital rôle in pandemic situations like COVID19, where it was causing an increased level of stress in patients and their CGs .
Patients' stress level
Parameters affecting patients stress level
It was a well-established fact that psychological burden is high in cancer patients of low socioeconomic status ,. In our study [Table 3], we found no relationship between increased stress level to socioeconomic status or source of treatment funding (Government/ NGO/ self). Education was found to be a significant parameter (p < 0.001) causing stress, where illiterate patients or patients with education level less than secondary schooling were observed to have a high level of stress as compared to patients who finished their secondary education [Table 1] and [Table 3]. This might be due to the more awareness and updating of knowledge with the latest information on COVID19 and its related consequences on cancer in the highly educated group of patients compared to less educated.
Therefore, we suggest an additional counselling, if needed among less educated and elderly patients which can be a great help for better understanding of the situation and helping them in coping from these pandemic situations and cancer .
Pandemic and lockdown related problems
In the present study, we observed a high level of stress in patients lacking transportation, finances, and social support [Table 4] and [Table 5]. Due to these problems, higher default rates were observed during the treatment period especially in the patients undergoing radiotherapy or chemotherapy.
Palliative and radical patients
In our study, we could not able to find much difference in mental stress levels between radical and palliative patients [Table 3]. From pre-pandemic time itself, there was already a high level of physical distress in palliative patients over radical patients due to metastatic disease, terminal illness and its consequences. This might be a strong possible reason for less increase in stress level in this cohort of patients as compared to radical patients .
Active treatment, surgical patients, and primaries
We observed a high level of stress in patients receiving some kind of cancer treatment as compared to those who were not receiving an active treatment such as follow-up patients [Table 3]. Among patients who were on active treatment, postoperative patients were observed to have more amount of stress compared to patients coming for CT/RT on an outpatient basis. This might be due to post-operative stress, pain, and morbidity related concerns, such psychological factors have both short-term and long-term impact on surgical outcomes of the patients . Pre-operative anxiety, depression, and low self-esteem are consistently associated with worse physiological surgical outcomes and postoperative quality of life . A strong relationship exists between anxiety and depression with post-operative pain . Therefore, it is important to do psychological intervention, exercises, and nutritional optimization on a regular basis.
We also noticed a lot of stress in patients of HNC and genitourinary (GUT)/GIT [Table 3]. In HNC patients, factors such as disfigurement, impaired speech, difficulty swallowing, and pain may cause stress , while in GUT/GIT patients, loss of weight and inability to take regular food can be the contributing factors.
Caregiver stress level
Clinically, relevant distress is common in CGs and it varies from 55 to 90% depending on the patient's Eastern Cooperative Oncology Group (ECOG) status, disease severity, and stage of cancer ,. As per Rha et al.  and Northouse et al. , CGs always experience a high level of caring burden, which affects their personal life, quality of life, and their mental health over prolonged periods of time. This can be due to their increased responsibilities, and lack of timely medical attention towards their condition ,.
Age, relations, and education
In general, the elderly was found to be under high stress compared to younger CGs [Table 1] and [Table 3]. But some studies have reported a higher level of stress in the younger population . As shown in [Table 3], female CGs was under higher stress compared to male CGs (p < 0.05). In our study, the impact of the pandemic related stress was equally distributed in all the age groups and genders without much differentiation [Table 3].
Our study results are also in accordance with the previously reported studies, where stress has been found to be more in spousal CGs as compared to other relations . This can be due to the limited options of the spousal and parental CGs compared to those who are taken care by their relatives .
The education of CGs also plays a vital rôle in CGs stress, where an increased level of stress has been observed with an increase in the level of education . But our results are not in line with previous studies , where CGs literacy or education less than higher secondary has higher level of stress (p < 0.01 for PSS and p < 0.001 for CSI) [Table 3]. This differences might be related to unawareness of COVID-19 infection, misbeliefs, unnecessary fear in mind, and added factors of financial constraints due to associated poverty.
Primary site of tumors
CGs taking care of cancer patients with primaries such as brain tumors (p < 0.01 for CSI), breast (p < 0.01 for PSS), and GIT (p < 0.01 for both PSS and CSI) were observed to have higher levels of stress compared to those patients having other primaries [Table 3]. Previous literature has shown profound levels of stress in CGs with patients having brain tumors . In our study, we found similar results, where higher levels of stress were observed among CGs of CNS patients matching with the previously published data . This might be due to the high dependency of these patients due to their poor ECOG status and CGs of these dependent patients engage in various tasks related to them such as patient care, feeding, skin-care, daily activities, and stoma care. Their daily activities are also more time-consuming, confining, and physically more restraining.
Transport issues during these pandemic situations have added up an increase in levels of stress to CGs. In this study [Table 4], transportation issue was found to have increased stress for PSS in CGs (p < 0.05). To avoid any psychological and mental burden in CGs, our center provided accommodation for all the patients and their CGs to minimize the transport issue and stress associated with it, which has shown a tremendous positive effect in reducing the travel associated stress levels in CGs.
Strength of study
The present study was conducted through a personal interview of all the patients and their CGs presented to our cancer care center over a period of five months, which we feel a good reliable method to get comprehensive information about the psychological burden and mental health condition of both the patients and their CGs.
The use of standardized, psychometrically evaluated and established scales is important factor for data reliability and validity of the results. Another major strength of our study includes equal distribution of population of age and gender proportion.
- There was an inherent bias in our study, as we measured single point stress of patients and CGs who reported to the hospital during COVID-19 pandemic in India.
- We could not obtain the stress level of patients and CGs who could not come or default in between for treatment during the month of May 2020.
- Follow-up measurements were not conducted.
COVID-19 pandemic and its consequences are multifaceted. To the best of our knowledge, this study is believed to be among the first survey to identify the psychological burden and mental health status in cancer patients and their CGs during the COVID-19 outbreak in India. In light of many uncertainties and widening economic crises surrounding this pandemic, suicidal and psychological ideations may emerge.
Timely surveys such as ours will definitely help identify and improve the care towards patients and their CGs without worsening their psychological status any further. Many of our strategies to keep our patients and their CGs spirits high have really worked well and also helped them stay calm. But because of the uncertainty and evolving nature of the pandemic, the process of psychosocial intervention should become a continuous process until the pandemic subsides. Novel ways of clinical interactions such as telemedicine, retaining effective communication between clinician and patient/CGs will highly help in establishing a positive note, and in assisting to overcome the challenges caused by the COVID-19 pandemic. For better outputs and concrete results, further longitudinal studies are recommended in a large population of patients and CGs, to evaluate their mental burden and the effect of the designed interventions.
| Acknowledgements|| |
The authors thank Yasam Venkata Ramesh from HCG Manavata Cancer Centre, Centre for Difficult Cancers (CDC), Nashik, India, for his medical writing assistance.
We also thank Bhavana, Deena, and Lavina of HCG Manavata Cancer Centre, Nashik, India for their accrual. We further thank Vijay Palwe, Prakash Pandit, Revathy, and Shwetabh for their kind support and guidance.
| Financial Support and Sponsorship|| |
| Conflicts of Interest|| |
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[Table 1], [Table 2], [Table 3], [Table 4], [Table 5]