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Indian Journal of Community Medicine

A Study of the Effects of Illness Experienced by Families of Oral and Oropharyngeal Cancer Patients

Author(s): A. Bhagyalaxmi, V.S. Raval

Vol. 27, No. 1 (2002-01 - 2002-03)

Deptt. of Preventive and Social Medicine, B.J. Medical College, Ahmedabad

Abstract

Research question: What are the various areas and burden a family experiences due to presence of oral and oropharyngeal cancer patient.

Objectives: 1. To identify the family burden like financial burden, disruption of routine activities and family leisure etc. 2. To study the severity of family burden experienced by the families of oral and oropharyngeal cancer patients.

Study design: Case-control.

Setting: Gujarat Cancer and Research Institute (G.C.R.I.), Ahmedabad.

Participants: 100 cases belonging to the diagnostic categories no. 140-46 of ICD-9 and 100 controls belonging to the diagnostic categories other than no. 140-46 of ICD-9.

Statistical analysis: Proportions, Chi-square test and Z test.

Results: Financial burden was observed in 36% of cases and 43% of controls. More of controls (54%) had disruption of routine activities as compared to cases (36%). On the whole 43% of cases and 47% of controls had burden on the family. Out of 43% respondents reporting any burden, 36(83.72%) were identified with severe burden.

Keywords: Oropharyngeal cancer patients, Family burden

Introduction:

Cancer is a major disease with high incidence and mortality rate and increasingly recognized to be a global problem, not limited to the industrialized nations. India entered into "population explosion" era in 1920 and after 1940 mortality rate started declining. In 1980, a very large cohort born in 1940 entered into "cancer prone" age1

Cancer is no longer considered as an acute, immediately fatal disease. The ability to treat cancer successfully for either cure or control has increased the number of persons living with the disease. A diagnosis of cancer compounds the struggle for survival and introduces new financial, physical and psychological demands. The past two decades have witnessed an explosion in research in the psychosocial and social aftermath of cancer. A great majority of the literature comes from the West. Indian population studies found their sick relatives most burdensome in respect to the effect of the illness on family finances, the disruption of normal family activities and the production of stress symptoms in family members other than the patient 2 . Its social dimensions particularly in the Indian context always required an in depth study.

Oral cancer presents major health problem in India as 17% to 48% of all the cancers diagnosed are found in the oral cavity 3 . Therefore, with the idea of studying the social variables associated with oral and oropharyngeal cancers, a comparative study was undertaken.

Material and Methods:

A case-control study was undertaken between 1st August to 30th November 1995, at Gujarat Cancer and Research Institute (G.C.R.I.), Ahmedabad.

A case is defined as an individual who was registered at G.C.R.I. and belonged to the diagnostic categories no. 140-46 of ICD-9 (Oral and oropharyngeal cancers).

A control is an individual who was registered at G.C.R.I. on the same day or within two days and belonged to the diagnostic categories other than no. 140-46 of ICD-9 (cancers other than oral and oropharyngeal and was similar for confounding factors like age, sex and area of residence. The socio-economic status was calculated by using the modified Prasad's classification 4.

Interview was conducted with the attending relative of each patient by using standardized interview schedule. The scale for burden on the family contained six general categories of enquiry, each having two to six individual items for further probing.

Rating for each general category as well as each individual item was done on a three-point scale.

Severe burden 2
Moderate burden 1
No burden 0

Assessment of level of family burden was done based on the available scores. The mean score was taken as the cut off for "no" burden and the standard deviation added to the mean values and the product rounded off to the nearest integer was taken as a cut off point for mild, moderate and severe burden e.g. mean score for financial burden in cases was 1.71x . X considered as no burden, while x + 1 SD = 1.71 + 2 = 3.71 rounded off to 4, is a cut off point for mild financial burden experienced by the family. Similarly, calculations were done for moderate x (x+2SD) and severe (x+3SD) burden. This assumption was followed in individual category as well as in the aggregate score.

Results:

Total scores for 100 cases of oral and oropharyngeal cancers as well as 100 matched controls were analysed. The subjects were predominantly males in the age groups of 46-55 years (26%). The mean ages of cases and controls were 51.6n0.9 years and 50.2n1.51 years respectively.

Table I: Distribution of cases and controls according to age and sex.

Age (in year) Case Controls
Male Female Total Male Female Total
16-25 2 - 2 4 - 4
26-35 10 - 10 10 - 10
36-45 20 2 22 20 1 21
46-55 26 - 26 26 1 27
56-65 23 - 23 30 - 30
66-75 15 - 15 4 - 4
75+ 2 - 2 4 - 4
Total 98 2 100 98 2 100

Nos. also represent percentages as n=100.

Table II: Socio-demographic characteristics of cases and controls (n=100 each).

Characteristics Cases No. Controls No. Chi-square value
Residence
Rural 58 64 0.74*
Urban 42 36  
Type of family
Nuclear 51 49 0.08*
Joint 49 51  
Martial status
Married 93 90 0.58*
Unmarried 06 07  
Divorced/separated 01 03  
Religion
Hindu 96 93 0.9622*
Muslim 04 07  
Social class
Class I - 01 0.765*
Class II 02 01  
Class III 07 09  
Class IV 57 58  
Class V 34 31  

Nos. also represent percentages as n=100; *Non significant.

Table III: Distribution of cases according to the site.

ICD-9 Site Case No.
140 Lip 4
141 Tongue 52
143 Gum 9
144 Floor of mouth 2
145 Other mouth* 17
146 Oropharynx 16

Nos. also represent percentages as n=100; *Include hard palate, buccal mucosa and retromolar area.

Cases and controls were comparable in relation to various socio-demographic characteristics such as religion, educational qualifications, marital status, social background and social class.

Table IV: Mean and standard deviation of subjective burden score.

Subjective burden Cases Xscore Range of the score. S.D. Controls Xscore Range of the score S.D.
Financial burden 1.71 0-9 2.00 2.96 0-9 2.39
Disruption of routine family activities 2.60 0-6 2.09 3.42 0-6 1.39
Disruption of family leisure 2.50 0-8 2.32 3.20 0-8 2.59
Disruption of family interaction 0.49 0-2 0.57 0.51 0-2 0.52
Effect on physical health of other 0.18 0-2 0.47 0.23 0-1 0.41
Effect on mental health of other 0.40 0-2 0.56 0.49 0-2 0.51
Grand total 7.70 0-25 1.24 10.5 0-25 1.40

Table IV shows mean score of total subjective burden. For cases it was 7.7±1.2 compared to 10.5±1.4 for the controls.

There was no significant difference in prevalence of obstructive disorders in smokers and non-smokers.

Table V: Distribution of cases and controls according to their level of family burden as perceived by attending member of the family.

Category Severity of burden n=100
Mild Moderate Severe Total No burden Z value
Financial burden            
Case 19 12 5 360 64 1.015
Control 17 21 5 43 57  
Disruption of routine family activities
Case 22 14 0 36 64 2.605*
Control 31 23 0 54 46  
Disruption of family leisure
Case 20 18 4 42 58 2.00*
Control 31 18 7 56 44  
Disruption of family interaction
Case 41 4 0 45 55 0.709
Control 49 1 0 50 50  
Effect on physical health of other
Case 10 4 0 14 86 1.650
Control 23 0 0 23 77  
Effect on mental health of other
Case 32 4 0 36 64 1.732
Control 47 1   48 52  
Grand total
Case 5 2 36 43 57 0.396
Control 6 3 38 47 53  

*Significant (p<0.05).

Financial burden was observed in 36% of cases and 43% of controls, only 5% in both groups had severe financial burden. More of controls (54% and 56%) had disruption of routine activities and family leisure as compared to cases (36% and 42%). On the whole 43% of cases and 47% of controls had burden on the family, out of 43 respondents reporting any burden 36(83.72%) were identified with severe burden.

Table VI: Association between type of family and subjective burden.

No. reporting subjective burden

Type of family

Chi-square test

P value

Nucler No.(%)

Joint No.(%)

Total No. (%)

0.585

>0.10

Out of 43 cases in whom burden was reported, 29(67.45%) were in nuclear family while such nuclear family members in control group were 28 out of 47 (59.57%). However, the difference was not statistically significant.

Discussion:

Oral cancer is a disease principally confined to the older age group. In the present study 66% of cases were above 45 years of age. This correlates well with R.P. Vaish et al (1985) 3 who reported 78.1% of the cases for this age group. Financial burden was observed in 36% of cases and 43% of controls. This burden was mainly due to discontinuation or loss of job and expenditure on treatment, medicine, transport and accommodation away from home. Janet Parameshwaran 5 found the financial burden (moderate to severe) in 70% of the affected families. In the present study, 86.11% of cases having financial burden belonged to low socio-economic class. Majority of patients studied were in social class III and IV (91%). However, poor people are more likely to be diagnosed with cancer when the disease is advanced and treatment options are more limited 6

Disruption of routine activities was mainly because of the need of some one looking after the patient's activities. A significant proportion of controls (54%) had disruption of routine activities as compared to the cases (36%) (Z=2.605, p<0.05). This may be due to the relative independence of cases of oropharyngeal cancers to carry over personal routine work compared to the other cancer cases. Such a disruption was noticed only in mild and moderate degree in all types of cancer patients. The absence of such disruption in the severe degree may be due to the fact that, once hospitalized the family members may get adjusted to the routine to some extent.

On the whole, 43% of cases and 47% of controls had burden on the family. On one hand, the individual category of burden was reported as "mild" or "moderate" by most, when combined in the total score, majority of respondents could be identified with severe burden.

Conclusion:

This study supports the assumption that families of cancer patients experience various categories of burden. With the most basic and rudimentary interventions these may be substantially reduced.

Recommendations:

  1. In depth, study of social aspects of such patients may provide basis for practical guidelines for social care.
  2. Special training may be planned for some member of staff to identify social problems and counsel the cases and care takers in their family.

References:

  1. Murthy NS, Juneja A, Sehgal A. Cancer projections by the turn of century - Indian scene, Indian J Cancer 1990; 26: 74-82.
  2. Pai S, Kapur RL. The burden on the family of psychiatric patients - Development of an interview schedule, British J Psychiat 1981; 138: 332-5.
  3. Vaish RP, Jena DC. Relative frequency of oral cancer in southern Orissa. Indian J Cancer 1985; 22: 96-9.
  4. Kumar P. Social classification-need for constant upgrading. Indian J Community Medicine 1993; 18: 2-3.
  5. Parameswaran J. International seminar on Psycho-social issues in health care with special emphasis on psychosocial oncology. Abstract 1998.
  6. Barbara J, Berkman DSW, Suzanne E, Smmpson BS. Psycho-social effects of cancer economics on patients and their families. Cancer (suppl) 1993; 72: 2846-9.
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