| Abstract|| |
To study the perceived illness intrusion of continuous ambulatory peritoneal dialysis (CAPD) patients, to examine their demographics, and to find out the association among demographics, duration of illness as well as illness intrusion, 40 chronic kidney disease stage V patients on CAPD during 2006-2007 were studied. Inclusion criteria were patients' above 18 years, willing, stable, and completed at least two months of dialysis. Those with psychiatric co-morbidity were excluded. Sociodemographics were collected using a semi-structured interview schedule. A 14-item illness intrusion checklist covering various aspects of life was administered. The subjects had to rate the illness intrusion in their daily life and the extent of intrusion. The data was analyzed using descriptive statistics and chi square test of association. The mean age of the subjects was 56.05 ± 10.05 years. There was near equal distribution of gender. 82.5% were married, 70.0% belonged to Hindu religion, 45.0% were pre-degree, 25.0% were employed, 37.5% were housewives and 30.0% had retired. 77.5% belonged to the upper socioeconomic strata, 95.0% were from an urban background and 65.0% were from nuclear families. The mean duration of dialysis was 19.0 ± 16.49 months. Fifty-eight percent of the respondents were performing the dialysis exchanges by themselves. More than 95.0%were on three or four exchanges per day. All the 40 subjects reported illness intrusion in their daily life. Intrusion was perceived to some extent in the following areas: health 47.5%, work 25.0%, finance 37.5%, diet 40.0%, and psychological 50.0%. Illness had not intruded in the areas of relationship with spouse 52.5%, sexual life 30.0%, with friends 92.5%, with family 85.5%, social functions 52.5%, and religious functions 75.0%. Statistically significant association was not noted between illness intrusion and other variables. CAPD patients perceived illness intrusion to some extent in their daily life. Elderly, educated married subjects were predominant. There was no statistically significant association between illness intrusion and other variables.
|How to cite this article:|
Bapat U, Kedlya PG, Gokulnath. Perceived illness intrusions among continuous ambulatory peritoneal dialysis patients. Saudi J Kidney Dis Transpl 2012;23:958-64
|How to cite this URL:|
Bapat U, Kedlya PG, Gokulnath. Perceived illness intrusions among continuous ambulatory peritoneal dialysis patients. Saudi J Kidney Dis Transpl [serial online] 2012 [cited 2019 Jun 27];23:958-64. Available from: http://www.sjkdt.org/text.asp?2012/23/5/958/100876
| Introduction|| |
Continuous ambulatory peritoneal dialysis (CAPD) is presently one of the most preferred effective treatment modality, which is widely and successfully used to treat end-stage renal disease (ESRD) patients.  The distinctive advantages are that the treatment can be offered to patients of all age groups, they can have freedom from the machine, maintain their independence, mobility, and dialysis can be done at the patients' convenience. Although dialysis has saved and continues to save many lives, the emotional impact is very severe on the patient and the family.  They need to make adjustments and adaptations to the treatment schedule and changed lifestyles. Life on dialysis is a perpetual challenge due to the demanding treatment schedule, dietary restrictions, and changes in functions.  The dialysis patients' dependence on a machine or on a personnel for survival "struggles" with the independence that is needed to maintain a normal life. A number of stressors operate in maintenance dialysis patients; these include social, financial, and marital problems, dependency on the staff and family members, limited activities, and treatment-related problems.  Life on dialysis for patients with chronic kidney disease (CKD) Stage V shares similarities with other chronic disorders, in that there are threats to autonomy, a considerable burden of illness, and changes in functional status. Illness intrusion is a fundamental determinant of the psychosocial impact of chronic illness.  Chronic illness can disrupt lifestyles by interfering with involvements in activities and interests.  CKD Stage V patients typically experience a number of illness-induced stressors that can exert lifestyle-disrupting effects. Illness intrusiveness is hypothesized to derive from illness-induced anatomical changes, functional deficits, and physical disabilities. All these compromise psychosocial well being and contribute to increased emotional distress.  The paucity of published Indian literature focusing on this dimension prompted us to undertake the present study.
| Aims and Objectives|| |
To study the perception of illness intrusion of CAPD patients, to delineate their demographics, to look into the association between perceived illness intrusion and demographics, as well as well as duration on dialysis.
| Methods|| |
This is a cross-sectional study of 40 incident chronic kidney disease patients on CAPD during 2006-2007. We included patients above 18 years of age, who were willing and stable and who had completed at least two months of CAPD. Patients with a history of previous psychiatric co-morbidity were excluded. The subjects were interviewed using a semi-structured interview schedule covering demographics. A 14-item illness intrusion checklist covering the various aspects of life was administered; illness intrusion was assessed using a modified illness intrusion check list based on the Illness Intrusiveness Rating Scale  to suit the applicability of our patient population. This self-reporting instrument obtains ratings of the extent to which the illness interferes with each of the life domains. The subjects had to rate their individual ratings on a four point scale ranging from 0- not applicable, 1- not at all, 2- to some extent, and 3- to a great extent. The scores were then computed and the extent of the illness was determined. Descriptive statistics was used to analyze the demographics and chi square test of association was used to analyze the variables with SPSS Windows Version 10.
| Results|| |
[Table 1] shows the demographic characteristics of the patients - 45% were above 58 years followed by 40% in the age group of 48-57 years and 15% in the age group of 28-47 years, with a mean age of 56.5 ± 10.05 years. There was no significant gender difference observed (53% and 47%). Eighty-three percent were married. Seventy-three percent of the respondents belonged to Hindu religion. Forty-five percent had completed their pre-degree and another 35% had completed graduation. Sixty percent were occupied. Seventy-eight percent and 17% were from middle and upper socio-economic strata, respectively. Ninety-five percent of the respondents were from an urban background and belonged to nuclear families (65%). [Table 2] shows the duration of dialysis in months. Fifty-three percent of the respondents had completed 2-12 months of CAPD, with a mean of 19.08 ± 16.49 months. Fifty-eight percent of the respondents were performing the CAPD procedure by themselves. For another 25%, family members and for the rest, others were performing the procedure [Figure 1]. Ninety-five percent of the respondents were on three or four exchanges daily. [Table 3] shows that there was no statistically significant association between illness intrusion and demographics and illness intrusion and duration of dialysis. The respondents indicated that illness had intruded in their daily life "to some and great extent" (67% and 25%, respectively) [Figure 2]. The affected areas of daily life have been depicted in [Table 4]; health - 47.5% being affected to some extent, diet - 40% to some degree, for another 40% it had not affected at all, and for 25% to a "great extent."
|Table 3: Association between illness intrusion duration on CAPD and demographics (P < 0.05).|
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Seventy-two percent of the respondents did not take part in any active sporting activities. Similarly, 57.5% did not have hobbies and for among those who had some hobbies, 17.5% reported no illness intrusion. With regard to finance, 37.5% reported that no illness intrusion was experienced, while another 37.5% reported to a "great extent" and 25% to "some extent."
For 38%, sexual lives were not applicable. Thirty-six percent reported illness intrusion to "a great extent" and "some extent" in sexual life. Relationship with the spouse for 52.5% was not affected; relationship with family and friends was not affected for 85.5% and 92.5%, respectively. In 25.5%, illness had not intruded into the psychological/emotional areas, while in 25% it had affected to a "great extent" and in 50% "to some extent". More than half the subjects reported that illness had not interfered in their social functions. Similarly, 75% reported that illness had not interfered with regard to religious activities/functions. Recreation for 30% and 22.5%, respectively, was affected "to great and some extent."
| Discussion|| |
Chronic disabling conditions disrupt the lifestyles of the affected individuals and their families by interfering with the activities and interests, compromising quality of life.  Illness intrusiveness-illness induced disruptions to lifestyles, activities and interests is an underlying determinant of the psycho-social impact of chronic illness, and it interferes with continued involvements in valued activities and interests. Illness intrusiveness has also been observed to relate systematically to a number of psychosocial outcomes. In end-stage diseases, the disease characteristics have been found to relate illness intrusion into important life domains, such as work and finances, family and personal relationships, recreation, as well as health-related domains.  These patients experience a number of illness-induced stressors. The most common of these are physical disability and incapacitation, decreased strength and stamina, chronic pain, dependency on the machine and/or personnel, complex medical regimens, significant time commitments for the treatment, as well as economic burdens. An illness is said to be intrusive when it substantially interferes with one's desired lifestyle as is in CKD Stage V.  There is a paucity of Indian literature in this area and the Western literature available are comparative studies in patients with chronic illnesses such as rheumatoid arthritis, multiple sclerosis, and CKD Stage V. , Studies on enhancing personal control and minimizing illness intrusion, wherein the authors have compared the hemodialysis/CAPD and transplant recipients, report that the CAPD patients perceive less of illness intrusiveness as compared with HD patients.  [Table 1] shows that there is no significant gender differences observed in this sample. The elderly comprise the most rapidly expanding segment of the ESRD population. In this cohort, we observed that a large majority of subjects were above 58 years of age; this could be due to the increased longevity attributable to medical/technological advances as well centers offering treatment for CKD for the elderly. Nearly 85% of the patients represented in the age group above 38 years. This included those who were (a) unfit to undergo transplantation either due to comorbidity or absence of willing and medically fit donors in the family, (b) those waiting for a deceased donor kidney, or (c) those subjects who had preferred dialysis therapy for personal reasons. In this study, the younger age group is represented in smaller numbers as they would have opted for transplantation as a definitive option of renal replacement therapy. The subjects' marital status is consistent with their age, and a majority (83%) were married. Eighty-five percent were educated up to pre-degree, degree, and post-graduation. Nearly half the sample was occupied in some kind of an occupation, which includes the home makers', while 30% were retired. They were from the middle and upper socio-economic strata, nuclear families, and urban background. We find some of the pre-requisites responsible for a better outcome of the CAPD procedure are patients who have good education and found it affordable, with adequate family support. Those from the urban background fare better than their counterparts. A statistically significant association was not observed between illness intrusion and demographics, illness intrusion, and duration on CAPD, as shown in [Table 2]. Perhaps this could be because of the small sample size. Individuals with ESRD experience significantly disabling symptoms such as fatigue, low energy, pain and reduced physical strength, and stamina. Despite these disabling symptoms, more than half the sample reported that illness had not intruded in their work. Probably this is possible because treatment time is at their control.
They could adjust the CAPD exchange timings according to their convenience and attend to their work schedule. Patients perceived illness intrusion with work in nearly 42.5%. Illness had interfered with work to "some/great extent." It could also be that these patients who reported illness intrusion were yet to adjust and adapt to the treatment procedure and manage time. As shown in [Figure 2], majority of the patients were performing the dialysis by themselves; this would reduce the dependency and increase their self-esteem and self-confidence. Chronic conditions may vary in the magnitude of illness intrusiveness they produce in specific life domains that are most severely impacted.  Intrusiveness, however, derives from illness-produced disruptions. A variety of illness variables has been hypothesized to contribute to illness intrusions  as shown in [Table 3] and [Table 4]. Illness intrusion was reported to a "great extent and some extent" by 67% and 25.5%, respectively. CKD Stage V patients reported significantly higher levels of illness intrusiveness into diet, most likely because of the substantial dietary and fluid-intake limitations associated with renal replacement by dialysis.  A similar pattern is seen in this sample, wherein 60% were affected by the modified diet to some/great extent. The stringent fluid and dietary restrictions imposed by the dialysis treatment could explain the high level of illness intrusiveness into the diet as reported by the subjects. Sports were not applicable for 72.5%, and of those who played, 15% reported as affecting to some and great extent." Similarly, 57.5% of the respondents did not have any hobbies. More than half, 62.5%, reported that illness had intruded into finance to "a great and some extent." This patient representation could be those subjects from the middle and low socio-economic strata. They may be those patients who had to pay for their treatments. This is because the state government does not have enough funds and finances to meet the demands and the medical insurance is yet to become popular. Hence, those patients who are not company reimbursed have to pay for their treatments. Although there is enough expertise and facilities to provide all forms of renal replacement therapy for ESRD, our government is not able to fund the same and spends only $9 (approximately Rs 336) per capita per year on health. 
Sexual dysfunction is common in patients with CKD on dialysis, and often adversely affects the quality of life. This is perhaps one area that needs special attention by the renal care team for it is not discussed. There is a high prevalence of sexual dysfunction due to the effects of uremia, neuropathy, autonomic dysfunction, vascular disease, depression, and medications. The sexual disturbances in these patients include decreased libido, erectile dysfunction, menstrual disorders, and infertility.  In a study by Muthnyandkoch, patients reported high contentedness with respect to family life, partnership, and role of the family. However, almost 30% reported marked dissatisfaction with sex life.  In this cohort, more than half the sample reported significantly high intrusiveness into sex life, while 68% said relationship with their spouses had not been affected. These figures may also be under-estimated numbers, as the society and culture may not sanction permission to discuss the issues of sexual life openly. This is more true with the female patients. CKD Stage V patients experience significantly disabling symptoms such as fatigue, pain, reduced physical strength and stamina, and low energy. These may not be directly observable to the marital partners; they may fail to recognize these symptoms as determinants of illness intrusiveness. The spouses may perceive it as adoption of the sick role by the patient or abnormal behavior for secondary gain.  Another factor that probably deters the spouses from engaging in sexual activities is the fear of the catheter getting infected as well as the catheter getting displaced.
Illness intrusion was not experienced with regard to relationship with friends by 76%. Nearly 75% of the sample reported no illness intrusion with regard to psychological and emotional spheres. Probably, this perception could be of those patients who have been on dialysis for a long time and are well adjusted. Similarly, illness intrusion into the social and religious functions are reported as affecting to some and great extent by 40% of the respondents, while nearly 25% of the sample reported that it had not affected at all. Statistically significant association was not noted between illness intrusion and other variables. This could be due to the sample size being small. We conclude from our study that CKD Stage V patients on CAPD perceived illness intrusion in their daily life only to some extent. Educated, elderly, married and those from nuclear families and urban background constituted majority of the subjects. Statistically significant association was not observed between illness intrusion and demographics or duration on CAPD.
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Lecturer in Medical Social Work, Department of Nephrology, St John's Medical College Hospital, Bangalore
[Figure 1], [Figure 2]
[Table 1], [Table 2], [Table 3], [Table 4]