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Factors Associated with Choosing the Kerala Model of Palliative Care versus Standard Care among Indian Cancer Patients
CC BY 4.0 · Indian J Med Paediatr Oncol 2024; 45(04): 340-345
DOI: DOI: 10.1055/s-0042-1742613
Abstract
Patients who opt for the Kerala Model of Palliative Care (KMPC) report favorable psychological outcomes. Still, not all patients in Kerala prefer this treatment's approach. Hence, this study is aimed to examine the demographical, medical, pain, and psychological factors associated with cancer patients who choose the KMPC versus standard care (SC). Using a cross-sectional design and purposive sampling, 87 patients (SC = 40; KMPC = 47) residing in Kerala, India, responded to questionnaires on pain, anxiety, and depression, and quality of life (QoL). Data analysis was conducted using chi-squared and independent sample t-tests. Findings revealed that KMPC (vs. SC) patients had lower levels of education, were self-employed or homemakers, belonged to a middle or low socioeconomic status, received government aid or were financially self-supported, and were diagnosed for less than 1 year or less than 5 years. KMPC patients reported higher levels of pain, lower levels of anxiety and depression, better overall total QoL, physical health, social health, functionality capacity, and emotional health. These findings suggest the need for community awareness programs regarding the benefits of opting for the KMPC. Patients who chose KMPC reported higher levels of pain than SC patients, highlighting the need for the KMPC to improve its approach to pain management.
Keywords
palliative care - pain management - quality of life - India
Footnote
✓ SC consists of treatment protocols for a specific illness that are accepted and followed by the treating physician. In the case of this study, SC refers to the standard medical care protocols for the treatment of cancer that are followed by the oncologist.
Reference: Standard of care. National Cancer Institute of health. Accessed September 15, 2021.
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/standard-of-care
✓ The hospitals where patients were recruited include:
• Ernakulam General Hospital (total = 46; SC = 17; KMPC = 29)
• Anwar Memorial Hospital (total = 12; SC = 5; KMPC = 7)
• Lakshmi Hospital (SC = 8)
• Government Hospital Aluva (total = 21; SC = 10; KMPC = 11)
Source(s) of Support
The lead author received a Ministry of Human Resources Development (MHRD) fellowship throughout the duration of this study.
Authors' Statement
This manuscript has been read and approved by all the authors, the requirements for authorship have been met, and each of the authors believe that the manuscript represents our honest work.
Authors' Contribution Details (ticked as applicable)
P.N.G. was involved in conceptualization, designing, definition of intellectual content, literature search, data acquisition, data analysis, statistical analysis, manuscript preparation, manuscript editing and review. M.P.G. was involved in conceptualization, designing, definition of intellectual content, literature search, data analysis, statistical analysis, manuscript editing and review. S.C. was involved in definition of intellectual content, manuscript preparation, manuscript editing and review. M.C. was involved in definition of intellectual content, literature search, manuscript preparation, manuscript editing and review. S.C. is guarantor for this manuscript.
Publication History
Article published online:
14 March 2022
© 2022. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
Abstract
Patients who opt for the Kerala Model of Palliative Care (KMPC) report favorable psychological outcomes. Still, not all patients in Kerala prefer this treatment's approach. Hence, this study is aimed to examine the demographical, medical, pain, and psychological factors associated with cancer patients who choose the KMPC versus standard care (SC). Using a cross-sectional design and purposive sampling, 87 patients (SC = 40; KMPC = 47) residing in Kerala, India, responded to questionnaires on pain, anxiety, and depression, and quality of life (QoL). Data analysis was conducted using chi-squared and independent sample t-tests. Findings revealed that KMPC (vs. SC) patients had lower levels of education, were self-employed or homemakers, belonged to a middle or low socioeconomic status, received government aid or were financially self-supported, and were diagnosed for less than 1 year or less than 5 years. KMPC patients reported higher levels of pain, lower levels of anxiety and depression, better overall total QoL, physical health, social health, functionality capacity, and emotional health. These findings suggest the need for community awareness programs regarding the benefits of opting for the KMPC. Patients who chose KMPC reported higher levels of pain than SC patients, highlighting the need for the KMPC to improve its approach to pain management.
Keywords
palliative care - pain management - quality of life - India
ntroduction
Palliative care aims to provide relief from pain and suffering and improve patients and their caregivers' quality of life (QoL).[1] Passed as a public health policy in Kerala, India, in 2008, the Kerala Model for Palliative Care (KMPC) aims to provide patients with optimal support and care throughout the cancer trajectory.[2] The model has a three-tier structure: (i) community and primary health centers offer medical and supportive care, (ii) a team of medical (physicians, nurses) and nonmedical (social workers, counselors) staff provide weekly at-home care, and (iii) government-certified trainers host capacity and skill-building workshops and training sessions for community volunteers and medical staff.[3] Typically, physicians introduce patients to KMPC when diagnosed with a life-threatening or terminal illness,[2] offering assurances that standard care (SC) will be given as well and explaining that KMPC aims at providing holistic (e.g., psychological, spiritual, social), at-home care as per the preferences and needs of the patient, irrespective of the stage of their illness.[4]
Research has shown that this community-based KMPC provides a range of practical (e.g., wound dressing, free medication, financial support for the family) as well as psychosocial (e.g., psychoeducation, counseling) support for patients and their families.[3] Further, patients who availed the KMPC reported feeling more independent, self-reliant, and self-confident.[4] Yet, many cancer patients do not choose KMPC and continue to opt for SC.[2] While the factors of physicians, patients, and family might impact this decision, this study focuses only on patient factors.
Understanding the factors associated with choosing KMPC/SC might guide intervention efforts to assist patients in making informed choices about the type of care they prefer. To the best of our knowledge, no research in India has examined the differences between patients who choose KMPC versus SC.
Therefore, the current study examines the demographical, medical, pain, and psychological factors associated with patients residing in Kerala who selected KMPC or SC.
Methods
Study Design and Participants
Using a cross-sectional design and purposive sampling (to ensure an equal number of patients who had chosen KMPC versus SC were represented in the sample), 87 patients (SC = 40; KMPC = 47) diagnosed with any cancer and at any cancer stage were recruited from 5 hospitals in Kerala. Inclusion criteria for the patients were that (i) they are at least 18 years of age, (ii) could speak Malayalam (regional language), (iii) were aware of their diagnosis, and (iv) did not have any other comorbidities or psychiatric conditions (as reported by themselves). All procedures performed in the study involve human participants were in accordance with the ethical standards of the Indian Institute of Technology Hyderabad [IITH/IEC/2018/03/19 w.e.f 14/03/2018] and with 1964 Helsinki declaration and its later amendments or comparable ethical standards. Further, approval was provided by the medical officers of the hospitals involved in the study.
Procedure
Eligible participants were approached by the first author (PG) at the oncology departments (SC patients) or the palliative care department within a hospital (KMPC patients)^. Participants were introduced to the study, including a brief description of the study and the time it would take the patient to participate. If any patient expressed an interest in participating, PG elaborately explained the study details and answered any questions that the patient had regarding the study. Following this, written informed consent was obtained from the participants, their demographical and medical information were collected, and the questionnaires were administered by PG.
One hundred and two patients were approached (SC = 52; KMPC = 50) by PG, of whom 15 declined participation (SC = 12; KMPC = 3) citing the following reasons: (i) caregivers refused patient's participation (commonly, in India, family caregivers play a considerable role in medical decision-making),[5] (ii) lack of time, (iii) too tired to participate, (iv) wanted the researcher to provide an incentive for participation which was not within the scope of this study, or (v) desired privacy. These reasons suggest that SC patients were less willing to participate in the study, warranting further attention. Consequently, the total number of participants for this study was 87 (SC = 40, KMPC = 47).
Measures
Pain [6]: Pain was assessed using a 11-point self-reporting Numeric Rating Scale, with the values of 0 representing “no pain” and 10 representing “worst pain imaginable.”
Anxiety and depression (Hospital Anxiety Depression Scale (HADS) [7]: The HADS is a 14-item Likert scale that assesses psychological distress in nonpsychiatric patients and consists of 2 sub- scales of anxiety (7 items) and depression (7 items). The HADS has been used extensively in Indian cancer populations and reports good validity and reliability.[5] [8] [9] The Cronbach α score for the current study is 0.805, indicating a good reliability.
Quality of life (Functional Assessment of Cancer-General; FACT-G) [10]: The FACT-G is a 27-item Likert scale designed to measure four domains of health-related QoL in cancer patients, namely physical (7 items), social (7 items), emotional (6 items), and functional well-being (7 items). The FACT-G has been used in Indian cancer populations and reports good validity and reliability.[11] [12] [13] The Cronbach α score for the current study is 0.789, indicating a good reliability.
Analysis
To differentiate between the KMPC/SC groups, chi-squared test was used for the demographic and medical variables, which were categorical in nature. Independent sample t-tests were conducted for the psychological variables, which were continuous in nature.
Results
Participants' Characteristics
KMPC patients (n = 47; mean age = 48.2 years) were primarily male, married, had an undergraduate degree, in Stage IV of cancer, and were diagnosed with cancer for between 1 and 5 years. SC patients (n = 40, mean age = 50.2 years) were primarily male, married, in Stage IV of cancer, and diagnosed with cancer for less than 1 year. [Table 1] describes patients' demographical and medical details per group.
|
Variables |
Treatment style |
Test statistics |
|||||
|---|---|---|---|---|---|---|---|
|
SC |
KMPC |
||||||
|
n |
% |
n |
% |
X2 |
p-Value |
||
|
Gender |
Male |
23 |
57.5 |
31 |
65.9 |
0.657 |
ns |
|
Female |
17 |
42.5 |
16 |
34.1 |
|||
|
Marital status |
Unmarried |
0 |
0 |
2 |
4.2 |
3.31 |
ns |
|
Married |
39 |
97.5 |
41 |
87.3 |
|||
|
Widowed |
1 |
2.5 |
4 |
8.5 |
|||
|
Religion |
Hinduism |
20 |
50 |
24 |
51.1 |
2.67 |
ns |
|
Christianity |
11 |
27.5 |
7 |
14.9 |
|||
|
Islam |
9 |
22.5 |
16 |
34 |
|||
|
Caste |
SC/ST[a] |
1 |
2.5 |
4 |
8.5 |
1.74 |
ns |
|
OBC[b] |
14 |
35 |
13 |
27.6 |
|||
|
General |
25 |
62.5 |
30 |
63.9 |
|||
|
Education |
Illiterate |
0 |
0 |
3 |
6.38 |
17.39 |
0.05 |
|
Until 5th grade |
0 |
0 |
6 |
12.7 |
|||
|
10th grade |
8 |
20 |
13 |
27.6 |
|||
|
12th / diploma |
2 |
5 |
8 |
17 |
|||
|
Undergraduate degree |
22 |
55 |
14 |
29.7 |
|||
|
Postgraduate degree |
8 |
20 |
3 |
6.3 |
|||
|
Occupation |
Government |
9 |
22.5 |
3 |
6.4 |
16.63 |
0.05 |
|
Private |
12 |
30 |
8 |
17 |
|||
|
Business |
3 |
7.5 |
4 |
8.5 |
|||
|
Self |
4 |
10 |
16 |
34 |
|||
|
Homemaker |
4 |
10 |
12 |
25.5 |
|||
|
Student |
4 |
10 |
3 |
6.4 |
|||
|
Retired |
4 |
10 |
1 |
2 |
|||
|
Socioeconomic status |
Low |
8 |
20.9 |
15 |
31.2 |
6.93 |
0.05 |
|
Middle |
15 |
37.5 |
24 |
51 |
|||
|
High |
17 |
42.5 |
8 |
17 |
|||
|
Source of financial support |
Self |
25 |
62.5 |
22 |
47 |
7.86 |
0.05 |
|
Government |
3 |
6.3 |
15 |
31 |
|||
|
Private |
12 |
25.5 |
10 |
22 |
|||
|
Stage of cancer |
Stage I |
3 |
7.5 |
11 |
23.4 |
5.74 |
ns |
|
Stage II |
14 |
35 |
11 |
23.4 |
|||
|
Stage III |
10 |
25 |
7 |
14.8 |
|||
|
Stage IV |
13 |
32.5 |
18 |
38.2 |
|||
|
Time since diagnosis |
<1> |
23 |
57.5 |
19 |
40.4 |
6.50 |
0.05 |
|
<5> |
17 |
42.5 |
22 |
46.8 |
|||
|
>5 years |
0 |
0 |
6 |
12.8 |
|||
|
Family history of cancer |
Parents |
2 |
5 |
2 |
4.3 |
6.43 |
ns |
|
Siblings |
1 |
2.5 |
3 |
6.3 |
|||
|
Relatives |
10 |
25 |
3 |
6.3 |
|||
|
No history |
27 |
67.5 |
39 |
82.1 |
|||
|
Mean |
SD |
Mean |
SD |
T |
p -Value |
||
|
Age (years) |
50.2 |
10.4 |
48.2 |
8.7 |
−0.506 |
ns |
|
|
Pain |
2.35 |
1.64 |
2.89 |
1.56 |
−1.57 |
0.05 |
|
|
Anxiety and depression |
Anxiety |
9.98 |
4.41 |
8.21 |
4.11 |
1.91 |
0.05 |
|
Depression |
7.93 |
4.17 |
7.32 |
4.89 |
0.623 |
0.05 |
|
|
Total |
17.65 |
8.15 |
15.32 |
8.10 |
1.33 |
0.05 |
|
|
Quality of life |
Physical well-being |
16.25 |
5.30 |
17.44 |
5.24 |
−1.05 |
0.05 |
|
Social well-being |
13.30 |
3.17 |
16.25 |
3.78 |
−3.96 |
0.01 |
|
|
Emotional well-being |
12.45 |
4.01 |
14.14 |
4.40 |
−1.88 |
0.05 |
|
|
Functional well-being |
10.32 |
3.05 |
12.55 |
4.51 |
−2.72 |
0.05 |
|
|
Total |
52.32 |
10.92 |
60.40 |
14.86 |
−2.91 |
0.05 |
|
✓ The hospitals where patients were recruited include:
• Ernakulam General Hospital (total = 46; SC = 17; KMPC = 29)
• Anwar Memorial Hospital (total = 12; SC = 5; KMPC = 7)
• Lakshmi Hospital (SC = 8)
• Government Hospital Aluva (total = 21; SC = 10; KMPC = 11)
Source(s) of Support
The lead author received a Ministry of Human Resources Development (MHRD) fellowship throughout the duration of this study.
This manuscript has been read and approved by all the authors, the requirements for authorship have been met, and each of the authors believe that the manuscript represents our honest work.
Authors' Contribution Details (ticked as applicable)
P.N.G. was involved in conceptualization, designing, definition of intellectual content, literature search, data acquisition, data analysis, statistical analysis, manuscript preparation, manuscript editing and review. M.P.G. was involved in conceptualization, designing, definition of intellectual content, literature search, data analysis, statistical analysis, manuscript editing and review. S.C. was involved in definition of intellectual content, manuscript preparation, manuscript editing and review. M.C. was involved in definition of intellectual content, literature search, manuscript preparation, manuscript editing and review. S.C. is guarantor for this manuscript.
References
- Are M, McIntyre A, Reddy S. Global disparities in cancer pain management and palliative care. J Surg Oncol 2017; 115 (05) 637-641
- Vijay D. Community Palliative Care in Kerala and Nadia District, West Bengal Voices, Narratives and Experiences. Paper presented at: Indian Association of Palliative Care Conference; 2019; Kochi Kerala
- Azeez EPA, Anbuselvi G. Is the Kerala model of community-based palliative care operations sustainable? Evidence from the field. Indian J Palliat Care 2021; 27 (01) 18-22
- Philip RR, Venables E, Manima A, Tripathy JP, Philip S. “Small small interventions, big big roles”- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India. BMC Palliat Care 2019; 18 (01) 16
- Chittem M, Norman P, Harris PR. Relationships between perceived diagnostic disclosure, patient characteristics, psychological distress and illness perceptions in Indian cancer patients. Psychooncology 2013; 22 (06) 1375-1380
- Freyd M. The graphic rating scale. J Educ Psychol 1923; 14: 83-102
- Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67 (06) 361-370
- Thomas BC, Devi N, Sarita GP. et al. Reliability and validity of the Malayalam hospital anxiety and depression scale (HADS) in cancer patients. Indian J Med Res 2005; 122 (05) 395-399
- Chawak S, Chittem M. Are you satisfied with your care? A study examining the relationship between psychological factors and satisfaction with the medical consultation among Indian cancer patients. In: Pradhan R, Kumar U. eds. International Handbook of Advances in Emotion, Wellbeing, and Resilience: Theoretical Perspectives and Practical Applications. New Jersey: Apple Academic Press; 2021: 129-143
- Cella DF, Tulsky DS, Gray G. et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 1993; 11 (03) 570-579
- Thomas BC, Pandey M, Ramdas K, Sebastian P, Nair MK. FACT-G: reliability and validity of the Malayalam translation. Qual Life Res 2004; 13 (01) 263-269
- Singh DP. Quality of life in cancer patients receiving palliative care. Indian J Palliat Care 2010; 16 (01) 36-43
- Thomas BC, Thomas I, Nandamohan V, Nair MK, Pandey M. Screening for distress can predict loss of follow-up and treatment in cancer patients: results of development and validation of the Distress Inventory for Cancer Version 2. Psychooncology 2009; 18 (05) 524-533
- Mathew A, George PS, Ramadas K. et al. Sociodemographic factors and stage of cancer at diagnosis: a population-based study in South India. J Glob Oncol 2019; 5: 1-10
- Philip RR, Philip S, Tripathy JP, Manima A, Venables E. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC Palliat Care 2018; 17 (01) 26
- Cea ME, Reid MC, Inturrisi C, Witkin LR, Prigerson HG, Bao Y. Pain assessment, management, and control among patients 65 years or older receiving hospice care in the U.S. J Pain Symptom Manage 2016; 52 (05) 663-672
- Daniel S, Venkateswaran C, Hutchinson A, Johnson MJ. 'I don't talk about my distress to others; I feel that I have to suffer my problems...' Voices of Indian women with breast cancer: a qualitative interview study. Support Care Cancer 2021; 29 (05) 2591-2600
- Vallath N, Rajagopal MR, Perera S, Khan F, Paudel BD, Tisocki K. Access to pain relief and essential opioids in the WHO South-East Asia Region: challenges in implementing drug reforms. WHO South-East Asia J Public Health 2018; 7 (02) 67-72
- Ramasubbu SK, Pasricha RK, Nath UK, Rawat VS, Das B. Quality of life and factors affecting it in adult cancer patients undergoing cancer chemotherapy in a tertiary care hospital. Cancer Rep (Hoboken) 2021; 4 (02) e1312
- Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45 (06) 1094-1106
Address for correspondence
Publication History
Article published online:
14 March 2022
© 2022. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
References
- Are M, McIntyre A, Reddy S. Global disparities in cancer pain management and palliative care. J Surg Oncol 2017; 115 (05) 637-641
- Vijay D. Community Palliative Care in Kerala and Nadia District, West Bengal Voices, Narratives and Experiences. Paper presented at: Indian Association of Palliative Care Conference; 2019; Kochi Kerala
- Azeez EPA, Anbuselvi G. Is the Kerala model of community-based palliative care operations sustainable? Evidence from the field. Indian J Palliat Care 2021; 27 (01) 18-22
- Philip RR, Venables E, Manima A, Tripathy JP, Philip S. “Small small interventions, big big roles”- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India. BMC Palliat Care 2019; 18 (01) 16
- Chittem M, Norman P, Harris PR. Relationships between perceived diagnostic disclosure, patient characteristics, psychological distress and illness perceptions in Indian cancer patients. Psychooncology 2013; 22 (06) 1375-1380
- Freyd M. The graphic rating scale. J Educ Psychol 1923; 14: 83-102
- Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand 1983; 67 (06) 361-370
- Thomas BC, Devi N, Sarita GP. et al. Reliability and validity of the Malayalam hospital anxiety and depression scale (HADS) in cancer patients. Indian J Med Res 2005; 122 (05) 395-399
- Chawak S, Chittem M. Are you satisfied with your care? A study examining the relationship between psychological factors and satisfaction with the medical consultation among Indian cancer patients. In: Pradhan R, Kumar U. eds. International Handbook of Advances in Emotion, Wellbeing, and Resilience: Theoretical Perspectives and Practical Applications. New Jersey: Apple Academic Press; 2021: 129-143
- Cella DF, Tulsky DS, Gray G. et al. The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 1993; 11 (03) 570-579
- Thomas BC, Pandey M, Ramdas K, Sebastian P, Nair MK. FACT-G: reliability and validity of the Malayalam translation. Qual Life Res 2004; 13 (01) 263-269
- Singh DP. Quality of life in cancer patients receiving palliative care. Indian J Palliat Care 2010; 16 (01) 36-43
- Thomas BC, Thomas I, Nandamohan V, Nair MK, Pandey M. Screening for distress can predict loss of follow-up and treatment in cancer patients: results of development and validation of the Distress Inventory for Cancer Version 2. Psychooncology 2009; 18 (05) 524-533
- Mathew A, George PS, Ramadas K. et al. Sociodemographic factors and stage of cancer at diagnosis: a population-based study in South India. J Glob Oncol 2019; 5: 1-10
- Philip RR, Philip S, Tripathy JP, Manima A, Venables E. Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers. BMC Palliat Care 2018; 17 (01) 26
- Cea ME, Reid MC, Inturrisi C, Witkin LR, Prigerson HG, Bao Y. Pain assessment, management, and control among patients 65 years or older receiving hospice care in the U.S. J Pain Symptom Manage 2016; 52 (05) 663-672
- Daniel S, Venkateswaran C, Hutchinson A, Johnson MJ. 'I don't talk about my distress to others; I feel that I have to suffer my problems...' Voices of Indian women with breast cancer: a qualitative interview study. Support Care Cancer 2021; 29 (05) 2591-2600
- Vallath N, Rajagopal MR, Perera S, Khan F, Paudel BD, Tisocki K. Access to pain relief and essential opioids in the WHO South-East Asia Region: challenges in implementing drug reforms. WHO South-East Asia J Public Health 2018; 7 (02) 67-72
- Ramasubbu SK, Pasricha RK, Nath UK, Rawat VS, Das B. Quality of life and factors affecting it in adult cancer patients undergoing cancer chemotherapy in a tertiary care hospital. Cancer Rep (Hoboken) 2021; 4 (02) e1312
- Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manage 2013; 45 (06) 1094-1106