PSYCHO-ONCOLOGY

Psycho-Oncology 13: 429–433 (2004)Published online 28 April 2004 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.823

BRIEF REPORT

QUALITY OF LIFE OF PATIENTS WITH CANCERIN INDIA: CHALLENGES AND HURDLES IN

PUTTING THEORY INTO PRACTICE

MANOJ PANDEY*

Department of Surgical Oncology, Regional Cancer Centre, Medical College PO, Thiruvananthapuram, Kerala, India

SUMMARY

Although well establish in west, quality of life is a relatively new concept in India. The success of treatment is stillmeasured in term of number of years and not as number of quality years. We carried out a systematic review of thereports published from India on quality of life in cancer patients. Majority of the studies originated from thesouthern part of India, this was not surprising as this part has literacy rates and health indices at par with developedcountries. The studies mainly dealt with translation of existing tools in local vernacular, development of new tools,cross-sectional studies, and studies on palliative care. This article reviews these studies and presents the results ofwhat has been done so far and goes on to stipulate what more needs to be done. Copyright # 2004 John Wiley& Sons, Ltd.

INTRODUCTION

Though well established in the west, Quality ofLife (QOL) is a relatively new concept in cancertreatment in India, a society in transition. Tradi-tionally, the success of any cancer treatment hasbeen measured by assessing the tumor response, bychange in tumor volume and patient survival rates.The problem in such an approach is that in pursuitof an improved tumor response and survival, thequality of life often remains ignored.

Poor infrastructure, illiteracy, poverty and lackof proper treatment facilities at most centers oftenleads to poor survival rates and hence emphasishas always been on attaining quantity of life ratherthan quality of life. This is further compounded bynon-availability of validated tools in local verna-cular, indifference of the treating physicians

towards the QOL issues and social and culturalfactors that are unique to this society.

The published studies from India on quality oflife in cancer patients are far and few (Sharan et al.,1995; Pandey et al., 2000; Chandra et al., 1998;Chaturvedi, 1994), current ongoing studies areeven fewer. This short article reports the QOLstudies earlier carried out in India and thosecurrently underway, cross-cultural validity of locallanguage translation of some tools developed inthe west, and will review the factors that hindersthe development of psycho-oncology in India.

VALIDATION OF LOCAL LANGUAGETRANSLATED TOOLS

Availability of a valid measurement tool is one ofthe most important factors for QOL studies. Areview of English literature revealed that severalwell-known questionnaires have been translated invarious Indian vernaculars. Unfortunately, Indiais a country with 27 official languages and in each

Received 1 December 2003Copyright # 2004 John Wiley & Sons, Ltd. Accepted 5 March 2004

*Correspondence to: Department of Surgical Oncology, Re-gional Cancer Centre, Medical College PO, Thiruvananthapur-am, Kerala 695 011, India. E-mail: manojpandey@rcctvm.org

part of the country the language differs; this limitsthe use of translated tools, and could be seen asone factor hindering use of QOL. Hindi is the mostcommon language spoken by large number ofpatients. Results of translation of only one tool,WHOQOL is available in Hindi language, noreport on validation or psychometric properties oftool are available (Saxena et al., 1998).

FACT-G is another generic cancer specific toolthat has been translated to many Indian languages.The results of translation to Malayalam has beenpublished (Pandey et al., 2004), Cronbach’s forthis version of FACT-G was 0.8. Tool is also avail-able in Hindi, Gujarati, Bengali and Kannada.Other FACT tools that have been translated areFACT-HN, a tool specific for patients with headand neck cancer, FACT-B specific for breastcancer, and FACT-C for colorectal cancer. Thetranslated tools show substantial psychometricsensitivity. The Cronbach’s alpha for these rangefrom 0.8 to 0.94 (Pandey et al., 2002; Kothari,personal communication; Pandey, in communica-tion).

Other tools that has been translated are Qualityof life Index (QLI) (Thomas et al., 2000), LinearAnalogue Scale for Self Assessment (LASA)(Pandey et al., 2000). Brief Pain inventory Hindiversion (BPI-H) (Saxena et al., 1999), HospitalAnxiety and Depression Scale (HADS), Coping andConcerns inventory (Chaturvedi, 1994) (Pandeyet al., 2003) and Children’s Apperception Test(CAT-S) (Sharan et al., 1995).

TOOLS DEVELOPED IN INDIA

A number of tools have been developed in India,however, only few of them have been used incancer patients. Stress Tolerance tool was devel-oped by researchers in Department of Psychology,University of Kerala and was validated. It wasused on a sample of 50 cancer patients (Pandey,unpublished data); however there are no publishedreports of use of this tool.

Distress Inventory for Cancer I and II (DIC) isone such tool that has been developed for specificuse in cancer patients. DIC I development processhas been earlier reported (Thomas et al., 2002a);the DIC-II has now been developed. There are nopublished reports on psychometric properties ofthe tool. A hypothesis linking distress to various

stages of cancer diagnosis and treatment has alsobeen proposed (Thomas et al., 2002b).

Functional assessment of head and neck cancerpatients was developed and used in a sample of 15patients; the tool looked at the specific functionalderangements seen in head and neck patients dueto disease and its treatment like dry mouth,deglutition, swallowing, speech etc., however thereare no reports of its validity and internalconsistency (Pandey et al., 2003), although thetool was reported to be useful by the patients.Psychological well-being was studied in patientswith cancer, the tool comprised of both positiveand negative feelings. Positive feelings, coping,social support other than the family and spiritualwell-being were found to significantly affect thepsychological well being (Chandra et al., 1998).Mithila Mental Health Status Inventory of Kumarand Thakur is another tool developed in India toassess general mental health of patients. It wasused on a sample of 50 cancer patients and normalcontrols in a case control study and was found tobe useful (Verma and Asthana, 1994). PGI-HealthQuestionnaire-N-1 (Joshi et al., 2003) has beendeveloped for psychological distress and disabilityby researchers at Post Graduate Institute, Chan-digarh and Amritsar Depression Inventory (Bhuiet al., 2000) are two other tools developed in Indiathough never used in cancer population.

FACTORS IDENTIFIED TO INFLUENCEQOL IN INDIA

Various factors has been identified and reported toinfluence QOL in Indian patients. These arerecreation, social life, family relations, physicalactivity, sleep, concentration, breathing, fatigue,anxiety, education and occupation of spouse,family income and distance traveled for treatment.Subjects were interviewed to determine issues,which they considered as reflecting quality of lifeand how important these items were in the event ofa serious illness. Peace of mind, spiritual satisfac-tion and social satisfaction were considered to bevery important. Individual’s functioning and levelsof physical and psychological health were givenmuch less significance. Level of satisfaction wasvalued much higher than the level of functioning(Chaturvedi, 1991). Another study comparedmastectomized women with non-mastectomizedwomen operated for various other problems.

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Mastectomized women and non-mastectomizedoperated for other problems showed poorerbody-self-image than the normal women. Thesewomen also showed higher neuroticism measuredin terms of psycho-physical/physio-psychologicalcomplaints. Cultural barriers were found to hinderthe acceptance of prosthesis by these patients(Khubalkar and Khubalkar, 1999). Another studyinvestigated the impact of truth disclosure andfound it to have no significant effect on emotionalmorbidity (Ranjan and Dua, 2000). Recently twostudies from Mumbai reported on survival beyondcure in pediatric population (Kurkure et al.,2003a, b).

COPING AND CONCERNS

There are two studies reporting on coping andconcerns of patients with cancer (Sharan et al.,1995; Pandey et al., 2003). The main concerns andthe main coping strategies adopted by the patientsare detailed in Figures 1 and 2.

STUDIES IN PALLIATIVE CARE

While India has a long tradition of home-basedspiritual and religious care of the dying, there has

been no contemporary palliative care until rela-tively recently. There are more studies publishedon QOL in palliative care settings then on curablepatients. This is perhaps due to the social andreligious fabric of the country.

Awareness of need of palliative care and symptomcontrol

A survey conducted to assess the awareness,clinical knowledge, and education and trainingaspects of palliative care among clinical residentsof a tertiary care hospital showed that the conceptthat palliative care involves active total care waslacking in 8 (16%) residents. The cost of palliativecare in India was considered high and majorityconsidered hospice to be the right place forpalliative care (p=0.0003). Use the WHO steplad-der for cancer pain relief was known to 83%oncology and 15% non-oncology residents (Mo-hanti et al., 2001).

A few studies from the state of Kerala, locatedin the southern part of India, reported onsymptoms of patients requiring palliative care.The main symptoms identified were pain, dyspha-gia/difficulty in swallowing/feeding problems, an-orexia and non-healing wounds/infected wounds(Sureshkumar and Rajagopal, 1996; Sebastianet al., 1993; de Souza and Lobo, 1994). It was

Figure 1. Main concerns identified in Indian patients with cancer.

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further noted that non-compliance of patients totake adequate medications and the resistance fromrelatives sometimes made it difficult to achieveoptimum symptom control.

Concerns and other studies in palliative care setting

A single study looked at the concern ofpatients receiving palliative treatment. The mainconcerns identified were cancer pain (68%),physical health (60%), finances (54%), future(52%), mood disturbances and sadness (32%),anxiety (24%), being slowed down (40%), and notbeing able to work (and earn) (40%) (Chaturvedi,1994).

The facilities for palliative care of the patients islacking in most part of the country, in suchscenario it has been suggested that the radio-therapy departments should be used to providepalliative care to the patients (Bansal et al., 2003).The issue of availability, route of administration,alleviation of side effects like constipation andabuse of oral morphine in terminally ill patientshas been reported (Rajagopal et al., 2001; Kumaret al., 2000; Prasanna and Vidyasagar, 1994;Vijayaram et al., 1990).

CONCLUSIONS

The concept of palliative care has developedin India with setting up of palliative care units inalmost all cancer centers and hospices byvarious religious and social non-governmentorganizations, however there is no effort toimprove the QOL of 80% of cancer patientswho undergo treatment with curative intent, andnearly 60% of these will eventually return to livean active social life as a psycho-social cripple.Further, there are no efforts to rehabilitatepatients who are cured of their cancer. A fewself-help groups were formed but these are mostlydefunct.

There is an urgent need to start the Psycho-Social Oncology services in at least the premiercancer centers of India to help the patients who arecured of cancer and to cater to their psychologicalneeds. Psycho-oncology needs to be integrated aspart of comprehensive cancer care. People in thispart of the world are yet to realize that thetreatment of cancer is successful only if thepatients go on to lead a normal life after beingcured and not when they live their life as apsychosocial cripple, hiding their faces behinda veil.

Figure 2. Main coping strategies adopted by Indian patients with cancer.

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Copyright # 2004 John Wiley & Sons, Ltd. Psycho-Oncology 13: 429–433 (2004)

ACKNOWLEDGEMENT

The authors’ ongoing study on quality of life in breastcancer patients is supported by a research grant fromIndian Council of Medical Research wide grant - no 5/13/74/2000/NCD-III.

REFERENCES

Bansal M, Patel FD, Mohanti BK, Sharma SC. 2003.Setting up a palliative care clinic within a radio-therapy department: A model for developing coun-tries. Support Care Cancer 11: 343–347.

Bhui K, Bhugra D, Goldberg D. 2000. Cross-culturalvalidity of the Amritsar Depression Inventory and theGeneral Health Questionnaire amongst English andPunjabi primary care attenders. Soc PsychiatryPsychiatr Epidemiol 35: 248–254.

Chandra PS, Chaturvedi SK, Channabasavanna SMet al. 1998. Psychological well-being among cancerpatients receiving radiotherapy}a prospective study.Qual Life Res 7: 495–500.

Chaturvedi SK. 1991. What’s important for quality oflife to Indians}in relation to cancer. Soc Sci Med 33:91–94.

Chaturvedi SK. 1994. Exploration of concerns and roleof psychosocial intervention in palliative care}astudy from India. Ann Acad Med Singapore 23:256–260.

de Souza LJ, Lobo ZM. 1994. Symptom controlproblems in an Indian hospice. Ann Acad MedSingapore 23: 287–291.

Joshi K, Kumar R, Avasthi A. 2003. Morbidity profileand its relationship with disability and psychologicaldistress among elderly people in Northern India. Int JEpidemiol 32: 978–987.

Khubalkar R, Khubalkar M. 1999. MastectomizedIndian women: Psychological sequelae and dynamicsof underutilization prosthesis. Indian J Cancer 36:120–126.

Kumar KS, Rajagopal MR, Naseema AM. 2000.Intravenous morphine for emergency treatment ofcancer pain. Palliat Med 14: 183–188.

Kurkure P, Achrekar S, Dalvi N, Goswami S. 2003a.Childhood cancer survivors}living beyond cure.Indian J Pediatr 70: 825–828.

Kurkure PA, Achrekar S, Uparkar U, Dalvi N,Goswami S. 2003b. Surviving childhood cancer: Whatnext? Issues under consideration at the After Comple-tion of Therapy (ACT) clinic in India. Med PediatrOncol 41: 588–589.

Mohanti BK, Bansal M, Gairola M, Sharma D. 2001.Palliative care education and training during resi-dency: A survey among residents at a tertiary carehospital. Natl Med J India 14: 102–104.

Pandey M, Latha PT, Mathew A, Ramdas K, Iype EM,Nair MK. 2003. Concerns and coping strategies in

patients with oral cancer: A pilot study. Indian J Surg65: 496–499.

Pandey M, Singh SP, Behere PB, Roy SK, Singh S,Shukla VK. 2000. Quality of life in patients with earlyand advanced carcinoma of the breast. Eur J SurgOncol 26: 20–24.

Pandey M, Thomas BC, Ramdas K, Eremenco S, NairMK. 2002. Quality of life in breast cancer patients:Validation of a FACT-B Malayalam version. QualLife Res 11: 87–90.

Pandey M, Thomas BC, Ramdas K, Nair MK. 2004.FACT-G reliability and validity of Malayalamtranslation. Qual Life Res 13: 263–269.

Prasanna A, Vidyasagar M. 1994. Cancer pain relief inIndia. J Pain Symptom Manage 9: 291.

Rajagopal MR, Joranson DE, Gilson AM. 2001.Medical use, misuse, and diversion of opioids inIndia. Lancet 358: 139–143.

Ranjan R, Dua KK. 2000. Influence of truth disclosureon quality of life in cancer patients. Eubios J AsianInt Bioethics 10: 148–152. (Available at http://www.biol.tsukuba.ac.jp/�macer/ej105/EJ105d.htm)

Saxena A, Mendoza T, Cleeland CS. 1999. Theassessment of cancer pain in north India: The va-lidation of the Hindi Brief Pain Inventory}BPI-H.J Pain Symptom Manage 17: 27.

Saxena S, Chandiramani K, Bhargava R. 1998. WHO-QOL-Hindi: A questionnaire for assessing quality oflife in health care settings in India. World HealthOrganization Quality of Life (see comments). NatlMed J India 11: 160–165.

Sebastian P, Varghese C, Sankaranarayanan R et al.1993. Evaluation of symptomatology in planningpalliative care. Palliat Med 7: 27–34.

Sharan P, Mehta M, Chaudhry VP. 1995. Coping andadaptation in acute lymphoblastic leukemia. Indian JPediatr 62: 467–471.

Sureshkumar K, Rajagopal MR. 1996. Palliative care inKerala. Problems at presentation in 440 patients withadvanced cancer in a south Indian state. Palliat Med10: 293–298.

Thomas BC, Mohan VN, Thomas I, Pandey M. 2002a.Development of a distress inventory for cancer:Preliminary results. J Postgrad Med 48: 16–20.

Thomas BC, Pandey M, Ramdas K, Nair MK.2002b. Psychological distress in cancer patients:Hypothesis of a distress model. Eur J Cancer Prev11: 179–185.

Thomas BC, Pandey M, Sebastian P, Ahamed MI,Ramdas K, Nair MK. 2000. A casecontrol study intoquality of life of women with breast cancer. CancerStrategy 2: 61–68.

Verma KB, Asthana M. 1994. Mental health of cancerpatients. Psychol Rep 74(3 Pt 1): 914.

Vijayaram S, Ramamani PV, Chandrashekhar NS et al.1990. Continuing care for cancer pain relief with oralmorphine solution. One-year experience in a regionalcancer center. Cancer 66: 1590–1595.

QUALITY OF LIFE OF PATIENTS WITH CANCER IN INDIA 433

Copyright # 2004 John Wiley & Sons, Ltd. Psycho-Oncology 13: 429–433 (2004)