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Quality of life of continuous ambulatory peritoneal dialysis (CAPD) patients
Quality of life in CAPD patient Hong Kong Journal of Nephrology 2000;2(2):98-103.
O R I G I N A L A R T I C L E
Quality of life of continuous ambulatory peritoneal dialysis (CAPD) patients Chris SY CHING1, Oi-Man PUN2, Kwong-Shing WONG3, Charles L K CHAN4 Renal Unit, Department of Medicine; 2General out-patient clinic, Department of Health; 3Department of Ear, Nose and Throat; and 4Department of Clinical Oncology, Queen Elizabeth Hospital, Hong Kong.
1
Abstract We prospectively studied the quality of life (QOL) of patients undergoing continuous ambulatory peritoneal dialysis (CAPD) through a patient-perceived dimension. We adopted Ferrans and Powers' QOL index (dialysis version) as an instrument to measure the level of satisfaction and the perceived importance in each life item to get the final score of QOL. Our results showed that "Health and functioning" was the worst domain in QOL while "Family" domain was highly valued by patients on CAPD. Married patients had higher social and economic scores while the working patients had higher psychological scores than their counterparts, respectively. Female patients had a better acceptance on their disease and living conditions when compared with male patients. On the other hand, patients receiving social or disability allowance had significantly lower QOL scores in all life domains than those not. On futuristic dimension, respondents expressed a poor sense of control in life and a negative feeling towards the future. The divorce and unemployment rates were higher than the local general population. We concluded that patients on CAPD encountered intense psychosocial stress from difficulties in work, broken family and financial burden attributed to their medical illnesses. The small chance of receiving renal transplantation and the long-term nature of dialysis contributed to a poor sense of control in life and led to a pessimistic view of the future. Key words: Continuous ambulatory peritoneal dialysis (CAPD), Quality of life, Renal failure, Stress
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INTRODUCTION Patients with end-stage renal disease (ESRD) can sustain life through peritoneal dialysis or hemodialysis. In Hong Kong, a home-based therapy, continuous ambulatory peritoneal dialysis (CAPD), is the main form of
peritoneal dialysis therapy for patients with ESRD (1). It encourages self-care and frees patients from hospitalbased treatment. However, with organ shortage in renal transplantation (2), peritoneal dialysis might mean a never-ending treatment for these patients. Gokal (3)
Correspondence: Ms Chris SY CHING, Nursing Officer, Renal Unit, Ward B5, Queen Elizabeth Hospital, Hong Kong. Fax: (852) 2388 5389, E-mail: [email protected] 98
Hong Kong Journal of Nephrology, October 2000
Hong Kong J Nephrol 2000;2(2):98-103.
stressed the importance of quality of survival in dialysis patients. Chronic renal failure patients have been reported to have the worst quality of life (QOL) among patients with different chronic illnesses (4). Therefore, understanding the perceived QOL of dialysis patients could facilitate health care planning in renal service. QOL is generally defined as life satisfaction or satisfaction of needs (5-6). It encompasses multifaceted elements that act on one's external and internal well-being (7-11). Hornquist (12) specified that physical, psychological, social, activity, material and structural realms were the important areas in studying QOL. Meeberg (5) criticized that objective measurement of QOL only addressed one's living conditions and did not provide a complete picture of QOL. Bremer et al (13) suggested that subjective measurement of QOL including cognitive evaluation of life conditions and the emotional responses in terms of an individual's aspiration or expectation should be included in the assessment of QOL. Ferrans et al (14) defined QOL as a person's sense of well being that stemmed from satisfaction or dissatisfaction with the areas of life that were important to him/her. A Chinese proverb says "Contentment brings happiness". Satisfaction is a sense of feeling from one's subjective point of view (7-9,15). Each basic dimension of life does not have the same impact on every individual patient even with the same social and health background (15). Therefore, measuring QOL from a patient-perceived dimension could provide a more realistic view than from an objective measurement among.
CSY CHING, et al
Version (QLI-D) was used (14). Thirty-four questions in pairs were rated in a six-point Likert scale concerning domain satisfaction and domain importance. The instrument was translated into Hong Kong Chinese version by referring to the Taiwan Chinese Quality of Life Index - Generic Version (16). Besides, an item Diet was added in the questionnaire. For Chinese, "Clothing, eating, housing, transporting are the four essential requirement of the people", that indicates the importance of eating. An idiom "To the people foodstuff is allimportant" also illustrates the importance of eating in Chinese culture. The Quality of Life Index was widely used in QOL research in different patient groups (15-21). The translated Hong Kong Chinese version QLI-D was examined by a qualified translator and reviewed by two clinical psychologists and a renal physician on its content. Item analysis by Cronbach's alpha was used to examine the inter-item correlation in the related area. Reliability and stability were determined by repeating the questionnaire within 2 to 3 weeks in 10 randomly selected patients on CAPD.
METHODS
Items of Happy old age, Potential to get off dialysis, Effort for renal transplant, Potential to have long life and Personal goal achievement had a futuristic content. Patients were found to have difficulty in rating these questions. It involved complicated subjective selfjudging process of balancing personal strengths, weaknesses and possibilities in life. These aspects were essential in the perspective of QOL. To have a better understanding of this issue and allow dialysis patients to express their feelings towards life, three extra questions were added to the Likert scale: How do you think about your future?, What is being affected by your disease regarding the daily living? and What is the most important thing for you?.
This study was based on the conceptual framework of QOL from Ferrans and Powers. QOL was conceptualized as a multidimensional construct composed of four domains: Health and functioning, Psychological/ spiritual, Family, and Socioeconomic (14). QOL scores were measured and adjusted by one's perceived level of satisfaction with the perceived level of importance in the constructed items (14).
Statistical analysis was performed using the Statistical Package for the Social Sciences (SPSS) version 7.0 and followed a scoring procedure described by Ferrans and Powers QLI (15). Item satisfaction score (range: 0-30) was the product of the satisfaction score multiplied by the importance score. The higher the score for each item, the more is the perceived importance and satisfaction.
The aims of this study were to explore patient-perceived QOL among patients on CAPD, analyze the factors that influenced the QOL and examine the relationship between patients' background variables and QOL.
We recruited 80 CAPD patients from three renal dialysis centers in Hong Kong. The patients were asked to respond to a questionnaire during a follow-up visit. For patients who could not read or write, an interviewed questionnaire was used. Ferrans and Powers' Quality of Life Index - Dialysis
The values of parameters are given as mean (± standard error of mean) where relevant. The satisfaction and importance scores of each item were ranked. Results of different groups were compared using ANOVA. Correlations between different variables were measured by the correlation coefficient (r). Statistical significance was assumed at a p value less than 0.05. 99
Quality of life in CAPD patient
RESULTS Seventy-one patients on CAPD (89%) (35 men, 36 women) out of the 80 patients completed the questionnaires. The mean age was 50.9 ±12.6 years (range 27-80 years) and the mean duration on dialysis was 4.7 ±3.3 years (range 1-13 years). QOL scores were reproducible in the group of 10 patients who had repeated the questionnaires (r = 0.84, p < 0.01). The internal consistency by Cronbach's alpha was 0.86 for the total scales and 0.69, 0.87, 0.82 and 0.87 for the subscales of Family, Health and functioning, Socioeconomic and psychological/spiritual , respectively. Health and functioning subscale got the lowest QOL scores while the Family subscale had the highest scores (Table 1). The most dissatisfied items among the 35 items studied were the Ability to travel, Goal achievement and Unemployment (Table 2). These items also had low importance ranking. Despite a high importance ranking of the item Own health, it had a relatively low ranking in satisfaction. The item Sex life had the lowest importance ranking and a low satisfaction ranking.
Relationship between background variables and QOL The age of the patients was positively correlated with Health and functioning score (r = 0.30, p < 0.05) and Psychological/spiritual score (r = 0.31, p < 0.01). Female patients had a higher Psychological/spiritual subscale score than male patients (17.6 ±4.1 vs 15.5 ±4.4, p < 0.05). Married patients had a significant higher score (17.9 ±4.1 vs 14.6 ±6.6, p < 0.05) in the Socioeconomic subscale than the other groups. The working group had significant higher scores in overall QOL score (18.2 ±4.2 vs 15.9 ±2.5, p < 0.05) and Psychological/spiritual score (17.6 ±4.8 vs 14.5 ±3.7, p < 0.05) than the unemployed. Educational level had no statistical relationship with QOL score. The group (n = 19) with monthly family income in the range of HK$12,000 to HK$25,000 had a significantly higher overall QOL score (18.6 ±3.0 vs 15.5 ±0.9, p < 0.05) than those (n = 17) with less than $6,000 per month. Seventy-six percent (n = 13) of patients with family income less than $6,000 per month were receiving social/ disability allowance. Patients receiving social/disability allowance (n = 26) had significantly lower QOL scores in all subscales: Health and functioning subscale (14.5 ±4.2 vs 17.3 ±4.0, p < 0.05), Family subscale (17.5 ±4.4 vs 21.7 ±3.6, p < 0.05), Psychological/ spiritual subscale (14.4 ±4.1 vs 17.6 ±3.8, p < 0.05) and Socioeconomic score (15.3 ±4.5 vs 18.9 ±3.8, p < 0.05) than those not. 100
Table 1. Items and subscales scores.
Scores (mean ±SD)* Items in Family subscale: Family's health Children Family happiness Relationship with spouse Family subscale scores:
22.2 ±5.8 21.1 ±6.5 19.7 ±6.4 21.7 ±6.2 20.3 ±4.5
Items in Health and functioning subscale: Dialysis treatment Own health Receiving health care Physical independence Effort for kidney transplant Potential to get off dialysis Potential to live a long time Sex life Effort in family responsibility Usefulness to others Stress/worries Leisure time Ability to travel Happy old age/retirement Diet Health and functioning subscale scores:
19.7 ±5.3 16.8 ±6.9 22.9 ±4.9 20.1 ±7.4 18.0 ±6.1 15.6 ±7.7 18.1 ±5.4 15.5 ±4.5 16.5 ±6.8 16.6 ±4.9 14.7 ±5.2 16.8 ±5.8 12.6 ±5.2 15.2 ±7.2 15.8 ±5.5 16.4 ±4.4
Items in Socioeconomic subscale: Friends Emotional support from others Home Living environment Standard of living Own job Unemployment Education Financial independence Socioeconomic subscale scores:
19.7 ±5.3 19.9 ±7.0 18.2 ±5.6 18.0 ±5.6 16.3 ±4.9 19.2 ±4.1 13.6 ±5.0 14.8 ±5.4 16.4 ±6.2 17.3 ±4.3
Items in Psychological/spiritual subscale: Peace of mind Faith in own religions Personal goal achievement Happiness in general Personal appearance Self Psychological/spiritual subscale scores:
18.0 ±5.9 18.9 ±5.0 14.0 ±5.7 17.3 ±6.9 15.4 ±5.2 16.2 +5.1 17.7 ±4.4
Overall QOL score:
17.3 ±3.5
* QOL score range: 0-30
Patient's satisfaction on diet had a significant correlation with their Health and functioning (r = 0.66, p < 0.05) and Psychological/spiritual scores (r = 0.79, p < 0.01). Patients suffering from diabetic nephropathy had a significantly lower Psychological/spiritual score (14.6 ±2.2 vs 16.8 ±4.7, p < 0.05) than the non-diabetic patients.
Hong Kong J Nephrol 2000;2(2):98-103.
CSY CHING, et al
Table 2. Satisfaction and importance score ranking.
Ranking Satisfaction Importance Receiving health care Family's health Relationship with spouse Children Emotion support from others Physical independence Dialysis treatment Friends Family happiness Own Job Faith in own religions Potential to live a long time Home Living environment Peace of mind Effort for kidney transplant Happiness in general Standard of living Leisure time Financial independence Own health Life in general Effort in family responsibility Sex life Self Usefulness to others Diet Potential to get off dialysis Personal appearance Stress/worries Happy old age/retirement Education Unemployment Personal goal achievement Ability to travel
1 2 3 4 5 6 7 8 9 10.5 10.5 12 13 14 15 16 17 18 19 20 22 22 22 24 25 26 27 28.5 28.5 30 31 32 33 34 35
7 3 4 1 14 6 9 22 5 17 32 25 16 19 12 11 10 31 26 21 2 13 18 35 23 28.5 20 8 30 28.5 15 27 33 24 34
The futuristic aspect and QOL of CAPD patients
was 17.3 ±3.5 and ranged from 16.4 ±4.2 to 20.3 ±4.5 in the subscale scores. Referring to Dunn et al (21), who classified QOL scores into good (25-30), moderate (2025), fair (15-20) and poor (10-12), our patients on CAPD could be said to have a fair QOL. Comparing with patients in USA (20), our patients had lower QOL scores across all subscales (Health and functioning = 16.4 vs 20.86; Family = 20.3 vs 26.9; Psychological/spiritual = 16.6 vs 24.1; Socioeconomic = 17.7 vs 22.7 and Total QOL score = 17.3 vs 22.7). However, cultural differences and timing of study need to be taken into account on one's perception of QOL. As regards to home-based dialysis, family members could provide both caring and financial support to the patients. In our study, family was highly valued among all life domains by patients on CAPD. Goldberg (22) found a definite change in the value structure in dialysis patients. They valued their families more than material things. However, our patients' divorce rate was four times higher than that of the general population in Hong Kong (23), though the study did not reveal exactly when the patients divorced, before or after started on dialysis. Dunn et al (21) found that spouses of patients on CAPD were experiencing stresses that stemmed from financial burden and fear of death of their partners. This finding supported that married patients had a better social and economic support than divorced or separated patients. Besides, role difference might enable a better acceptance of female patients on their disease and living conditions than male patients. Health and functioning got the lowest score among all subscales of QOL. Own health was perceived to be the most important item but it ranked low in the satisfaction ranking. The dissatisfaction on health could be attributed to the irreversibility of their disease and the dependency on dialysis. Besides, anemia (24), hypoalbuminia (25) and inadequate dialysis (26) may also affect patients' well being.
A total of 28 patients responded to the questions concerning their future. Thirty-six percent of respondents had no idea, 18% expressed a poor sense of control and 26% a negative feeling towards the future. Only 13% had a positive or optimistic view. Transplantation and health were the most important concerns in 39% of respondents. However, 26% of respondents thought that nothing was important in life. Family (16%), job (10%) and financial support (10%) were other areas of concern. Job (22%), psychoemotional state (22%), physical health (19%) and marriage (17%) were being affected.
Being asked on sex-related questions often embarrassed Chinese patients. Sex is a cultural taboo for Chinese, especially in the poorly sexual functioning dialysis patients (27). Dialysis patients often had a decline in sexual activity and functioning (28). Sex-life got the lowest importance ranking among all life items. It seemed that sex-life was perceived as a luxury for dialysis patients taking into account of their poor health and physical functioning status.
DISCUSSION
Satisfaction on Health and functioning and Psychological/spiritual domains were positively correlated with patient's age. Younger patients had a poor
In this study, the overall QOL score of CAPD patient's
101
Quality of life in CAPD patient
perception on Health and functioning. It could be due to the high expectation of good health and the detrimental effect of dialysis on their social and physical activities.
Department of the Hong Kong Polytechnic University. REFERENCES 1. Lui SF, Ho YW, Chau KF, Leung CB, Choy BY. Hong Kong Renal
In this study, the working group had a significantly higher QOL score than the unemployed. However, 46% of CAPD patients in working age were unemployed. Job readjustment may be necessary in order to fit in their change in life style. In this study, the median family income was HK$8000 per month. It was lower than the median of HK$17500 for the general population of Hong Kong (29). In fact, patients with higher family income were found to have higher QOL scores.
Registry 1995-1999. Hong Hong J Nephrol 1999;1:53-60. 2. Hawkins BR. Current status of organ transplantation in Hong Kong. Transplant Proc 1996;28(3):1190-1192. 3. Gokal R. Quality of life. In: Gokal. R, Karl D, eds. The Textbook of Peritoneal Dialysis. Dordrecht: Kluwer Academic Publishers, 1994; 679-698. 4. Chan CL. Application of Quality of Life Scales for persons with chronic illness. Quality of Life Symposium, Hospital Authority, Hong Kong, April 10,1997. 5. Meeberg GA. Quality of life: a concept analysis. J Adv Nurs 1993; 18:32-38. 6. Young KJ, Longman AJ. Quality of life in persons with melanoma:
Patients receiving social/disability allowance had the lowest QOL score across all subscales. It could be attributed to the poor health, feeling of dependence, low self-esteem and inadequacy of social allowance. Bihl et al (20) identified most of the stressors were due to uncertainty about future in dialysis patients. Ferrans and Powers (30) indicated that dialysis patients only focused on the living for today. Some of the patients mentioned that they dared not think about the future. They expressed a negative feeling for the future. Only one-third of the respondents looked forwards to receiving renal transplantation and considered it the most important aspect of their lives. However, 26% of respondents expressed hopelessness. Ferrans and Powers (30) commented that people tend to adjust their aspiration level to fit with the new circumstances, that in turn restored subjective well-being. The pessimistic thought may be the result of multiple "maladjustments" in their aspiration.
a pilot study. Cancer Nurs 1983;6(3):219-225. 7. Molzahn A. Research critique: social support and health-related Quality of Life in black and white dialysis patient. ANNA J 1995;22 (3):309-310. 8. Neugarten B, Havighurst R, Tobin S. The measurement of life satisfaction. J Gerontol 1961;32:311-316. 9. George L, Bearon L. Quality of life: a critical review of current concepts, measures, and their clinical implications. Inter J Nurs Studies 1980;26:327-341. 10. Larson R. Thirty years of research on subjective well-being of older Americans. J Geront 1978;33:109-125. 11. Moberg DO, Brusek PM. Spiritual well-being: a neglected subject in quality of life research. Soc Indic Res 1978;5:330-323. 12. Hornquist JO. The concept of quality of life. Scand J Soc Med 1982; 10(2):57-61. 13. Bremer BA, McCauley CR, Wrona RM, Johnson JP. Quality of life in end-stage renal disease: a re-examination. Am J Kidney Dis 1989; 13(3):200-209. 14. Ferrans CE, Powers MJ. Quality of life index: development and psychometric properties. Adv Nurs Sci 1995;8(1):15-24. 15. Ferrans CE. Psychometric assessment of a Quality of Life Index for hemodialysis patient. Chicago: University Microfilms International, 1985;17-25. 16. Liu SN. An exploration of the psychometrics of the Quality of Life
It is known that there is complex interplay between one's QOL with different social background and environmental factors. However, the present study was limited by the sample size and resources to enable an extensive analysis on such relationships. We conclude that patients on CAPD encountered intense psychosocial stress from difficulties in working, broken family and financial burden attributed to their medical illnesses. The seemingly remote possibility of receiving cadaveric renal transplantation and the long-term dialysis dependency contributed to a poor sense of control in life and led to a pessimistic view of the future. Adequate psychosocial support for these patients is thus essential for them to lead an enjoyable and meaningful life.
Index of Chinese family. Nurs Res 1993;1(2):127-135. 17. Arzouman J, Dudas S. Ferrans CE, Holm K. Quality of Life of patients with sarcoma post chemotherapy. Oncol Nurs Forum 1991; 18(5):889-894. 18. Bliley AB, Ferrans CE. Psychological aspects of cardiovascular care: quality of life after coronary angioplasty. Heart Lung 1993;22(3): 193-199. 19. Anderson JS, Ferrans CE. The Quality of Life of persons with chronic fatigue syndrome. J Nerv Ment Dis 1997;185(6):359-367. 20. Bihl MA, Ferrans CE, Powers MJ. Comparing stressors and quality of life of dialysis patients. ANNA J 1988;15(1):27-28, 33-36. 21. Dunn SA, Bonner PN, Lewis SL, Meize-Grochowski R. Quality of Life for spouses of CAPD patients. ANNA J 1994;21(5):237-246. 22. Goldberg R. Vocational rehabilitation of patients on long-term hemodialysis. Arch Phys Med Rehabil 1974;55(2):60-65. 23. Census and Statistics Department. Hong Kong Annual Digest of Statistic. Hong Kong: Government Printer, 1997. 24. Paganini EP. In: Daugirdas JT, Ing TS, eds. Handbook of Dialysis.
Acknowledgement The authors acknowledge the help of Dr. Samantha MC Pang, Associate Professor of Nursing and Health Care 102
Boston: Little Brown & Company, 1994;458. 25. Cianciaruso B, Brunori G, Kopple J, Traverso G, Panarello G, Enia G, Strippoli P, Vecchi A, Querques M, Viglino G, Vonesh E, Maiorca.
Hong Kong J Nephrol 2000;2(2):98-103.
Cross-sectional comparison of malnutrition in continuous ambulatory peritoneal dialysis and hemodialysis Patients. Am J Kidney Dis 1995;26(3):475-486. 26. Heaf J. CAPD adequacy and dialysis morbidity: detrimental effect of a high peritoneal equilibration rate. Ren Fail 1995;17(5):575-587. 27. Kwan TH, Lee MKF, Au TC. The impact of CAPD on sexual life of
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28. Auer J, Gokal R, Stout JP. The Oxford/ Manchester study of dialysis patients. Scand J Urol Nephrol Suppl 1990;131:31-37. 29. Census and Statistics Department. 1996 Population by-census summary result. Hong Kong: Government Printer, 1996. 30. Ferrans CE, Powers MJ. The employment potential of hemodialysis patients. Nurs Res 1985;34:273-277.
renal patients. Hong Kong J Nephrol 1999;1:41-48.
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O R I G I N A L A R T I C L E
Quality of life of continuous ambulatory peritoneal dialysis (CAPD) patients Chris SY CHING1, Oi-Man PUN2, Kwong-Shing WONG3, Charles L K CHAN4 Renal Unit, Department of Medicine; 2General out-patient clinic, Department of Health; 3Department of Ear, Nose and Throat; and 4Department of Clinical Oncology, Queen Elizabeth Hospital, Hong Kong.
1
Abstract We prospectively studied the quality of life (QOL) of patients undergoing continuous ambulatory peritoneal dialysis (CAPD) through a patient-perceived dimension. We adopted Ferrans and Powers' QOL index (dialysis version) as an instrument to measure the level of satisfaction and the perceived importance in each life item to get the final score of QOL. Our results showed that "Health and functioning" was the worst domain in QOL while "Family" domain was highly valued by patients on CAPD. Married patients had higher social and economic scores while the working patients had higher psychological scores than their counterparts, respectively. Female patients had a better acceptance on their disease and living conditions when compared with male patients. On the other hand, patients receiving social or disability allowance had significantly lower QOL scores in all life domains than those not. On futuristic dimension, respondents expressed a poor sense of control in life and a negative feeling towards the future. The divorce and unemployment rates were higher than the local general population. We concluded that patients on CAPD encountered intense psychosocial stress from difficulties in work, broken family and financial burden attributed to their medical illnesses. The small chance of receiving renal transplantation and the long-term nature of dialysis contributed to a poor sense of control in life and led to a pessimistic view of the future. Key words: Continuous ambulatory peritoneal dialysis (CAPD), Quality of life, Renal failure, Stress
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INTRODUCTION Patients with end-stage renal disease (ESRD) can sustain life through peritoneal dialysis or hemodialysis. In Hong Kong, a home-based therapy, continuous ambulatory peritoneal dialysis (CAPD), is the main form of
peritoneal dialysis therapy for patients with ESRD (1). It encourages self-care and frees patients from hospitalbased treatment. However, with organ shortage in renal transplantation (2), peritoneal dialysis might mean a never-ending treatment for these patients. Gokal (3)
Correspondence: Ms Chris SY CHING, Nursing Officer, Renal Unit, Ward B5, Queen Elizabeth Hospital, Hong Kong. Fax: (852) 2388 5389, E-mail: [email protected] 98
Hong Kong Journal of Nephrology, October 2000
Hong Kong J Nephrol 2000;2(2):98-103.
stressed the importance of quality of survival in dialysis patients. Chronic renal failure patients have been reported to have the worst quality of life (QOL) among patients with different chronic illnesses (4). Therefore, understanding the perceived QOL of dialysis patients could facilitate health care planning in renal service. QOL is generally defined as life satisfaction or satisfaction of needs (5-6). It encompasses multifaceted elements that act on one's external and internal well-being (7-11). Hornquist (12) specified that physical, psychological, social, activity, material and structural realms were the important areas in studying QOL. Meeberg (5) criticized that objective measurement of QOL only addressed one's living conditions and did not provide a complete picture of QOL. Bremer et al (13) suggested that subjective measurement of QOL including cognitive evaluation of life conditions and the emotional responses in terms of an individual's aspiration or expectation should be included in the assessment of QOL. Ferrans et al (14) defined QOL as a person's sense of well being that stemmed from satisfaction or dissatisfaction with the areas of life that were important to him/her. A Chinese proverb says "Contentment brings happiness". Satisfaction is a sense of feeling from one's subjective point of view (7-9,15). Each basic dimension of life does not have the same impact on every individual patient even with the same social and health background (15). Therefore, measuring QOL from a patient-perceived dimension could provide a more realistic view than from an objective measurement among.
CSY CHING, et al
Version (QLI-D) was used (14). Thirty-four questions in pairs were rated in a six-point Likert scale concerning domain satisfaction and domain importance. The instrument was translated into Hong Kong Chinese version by referring to the Taiwan Chinese Quality of Life Index - Generic Version (16). Besides, an item Diet was added in the questionnaire. For Chinese, "Clothing, eating, housing, transporting are the four essential requirement of the people", that indicates the importance of eating. An idiom "To the people foodstuff is allimportant" also illustrates the importance of eating in Chinese culture. The Quality of Life Index was widely used in QOL research in different patient groups (15-21). The translated Hong Kong Chinese version QLI-D was examined by a qualified translator and reviewed by two clinical psychologists and a renal physician on its content. Item analysis by Cronbach's alpha was used to examine the inter-item correlation in the related area. Reliability and stability were determined by repeating the questionnaire within 2 to 3 weeks in 10 randomly selected patients on CAPD.
METHODS
Items of Happy old age, Potential to get off dialysis, Effort for renal transplant, Potential to have long life and Personal goal achievement had a futuristic content. Patients were found to have difficulty in rating these questions. It involved complicated subjective selfjudging process of balancing personal strengths, weaknesses and possibilities in life. These aspects were essential in the perspective of QOL. To have a better understanding of this issue and allow dialysis patients to express their feelings towards life, three extra questions were added to the Likert scale: How do you think about your future?, What is being affected by your disease regarding the daily living? and What is the most important thing for you?.
This study was based on the conceptual framework of QOL from Ferrans and Powers. QOL was conceptualized as a multidimensional construct composed of four domains: Health and functioning, Psychological/ spiritual, Family, and Socioeconomic (14). QOL scores were measured and adjusted by one's perceived level of satisfaction with the perceived level of importance in the constructed items (14).
Statistical analysis was performed using the Statistical Package for the Social Sciences (SPSS) version 7.0 and followed a scoring procedure described by Ferrans and Powers QLI (15). Item satisfaction score (range: 0-30) was the product of the satisfaction score multiplied by the importance score. The higher the score for each item, the more is the perceived importance and satisfaction.
The aims of this study were to explore patient-perceived QOL among patients on CAPD, analyze the factors that influenced the QOL and examine the relationship between patients' background variables and QOL.
We recruited 80 CAPD patients from three renal dialysis centers in Hong Kong. The patients were asked to respond to a questionnaire during a follow-up visit. For patients who could not read or write, an interviewed questionnaire was used. Ferrans and Powers' Quality of Life Index - Dialysis
The values of parameters are given as mean (± standard error of mean) where relevant. The satisfaction and importance scores of each item were ranked. Results of different groups were compared using ANOVA. Correlations between different variables were measured by the correlation coefficient (r). Statistical significance was assumed at a p value less than 0.05. 99
Quality of life in CAPD patient
RESULTS Seventy-one patients on CAPD (89%) (35 men, 36 women) out of the 80 patients completed the questionnaires. The mean age was 50.9 ±12.6 years (range 27-80 years) and the mean duration on dialysis was 4.7 ±3.3 years (range 1-13 years). QOL scores were reproducible in the group of 10 patients who had repeated the questionnaires (r = 0.84, p < 0.01). The internal consistency by Cronbach's alpha was 0.86 for the total scales and 0.69, 0.87, 0.82 and 0.87 for the subscales of Family, Health and functioning, Socioeconomic and psychological/spiritual , respectively. Health and functioning subscale got the lowest QOL scores while the Family subscale had the highest scores (Table 1). The most dissatisfied items among the 35 items studied were the Ability to travel, Goal achievement and Unemployment (Table 2). These items also had low importance ranking. Despite a high importance ranking of the item Own health, it had a relatively low ranking in satisfaction. The item Sex life had the lowest importance ranking and a low satisfaction ranking.
Relationship between background variables and QOL The age of the patients was positively correlated with Health and functioning score (r = 0.30, p < 0.05) and Psychological/spiritual score (r = 0.31, p < 0.01). Female patients had a higher Psychological/spiritual subscale score than male patients (17.6 ±4.1 vs 15.5 ±4.4, p < 0.05). Married patients had a significant higher score (17.9 ±4.1 vs 14.6 ±6.6, p < 0.05) in the Socioeconomic subscale than the other groups. The working group had significant higher scores in overall QOL score (18.2 ±4.2 vs 15.9 ±2.5, p < 0.05) and Psychological/spiritual score (17.6 ±4.8 vs 14.5 ±3.7, p < 0.05) than the unemployed. Educational level had no statistical relationship with QOL score. The group (n = 19) with monthly family income in the range of HK$12,000 to HK$25,000 had a significantly higher overall QOL score (18.6 ±3.0 vs 15.5 ±0.9, p < 0.05) than those (n = 17) with less than $6,000 per month. Seventy-six percent (n = 13) of patients with family income less than $6,000 per month were receiving social/ disability allowance. Patients receiving social/disability allowance (n = 26) had significantly lower QOL scores in all subscales: Health and functioning subscale (14.5 ±4.2 vs 17.3 ±4.0, p < 0.05), Family subscale (17.5 ±4.4 vs 21.7 ±3.6, p < 0.05), Psychological/ spiritual subscale (14.4 ±4.1 vs 17.6 ±3.8, p < 0.05) and Socioeconomic score (15.3 ±4.5 vs 18.9 ±3.8, p < 0.05) than those not. 100
Table 1. Items and subscales scores.
Scores (mean ±SD)* Items in Family subscale: Family's health Children Family happiness Relationship with spouse Family subscale scores:
22.2 ±5.8 21.1 ±6.5 19.7 ±6.4 21.7 ±6.2 20.3 ±4.5
Items in Health and functioning subscale: Dialysis treatment Own health Receiving health care Physical independence Effort for kidney transplant Potential to get off dialysis Potential to live a long time Sex life Effort in family responsibility Usefulness to others Stress/worries Leisure time Ability to travel Happy old age/retirement Diet Health and functioning subscale scores:
19.7 ±5.3 16.8 ±6.9 22.9 ±4.9 20.1 ±7.4 18.0 ±6.1 15.6 ±7.7 18.1 ±5.4 15.5 ±4.5 16.5 ±6.8 16.6 ±4.9 14.7 ±5.2 16.8 ±5.8 12.6 ±5.2 15.2 ±7.2 15.8 ±5.5 16.4 ±4.4
Items in Socioeconomic subscale: Friends Emotional support from others Home Living environment Standard of living Own job Unemployment Education Financial independence Socioeconomic subscale scores:
19.7 ±5.3 19.9 ±7.0 18.2 ±5.6 18.0 ±5.6 16.3 ±4.9 19.2 ±4.1 13.6 ±5.0 14.8 ±5.4 16.4 ±6.2 17.3 ±4.3
Items in Psychological/spiritual subscale: Peace of mind Faith in own religions Personal goal achievement Happiness in general Personal appearance Self Psychological/spiritual subscale scores:
18.0 ±5.9 18.9 ±5.0 14.0 ±5.7 17.3 ±6.9 15.4 ±5.2 16.2 +5.1 17.7 ±4.4
Overall QOL score:
17.3 ±3.5
* QOL score range: 0-30
Patient's satisfaction on diet had a significant correlation with their Health and functioning (r = 0.66, p < 0.05) and Psychological/spiritual scores (r = 0.79, p < 0.01). Patients suffering from diabetic nephropathy had a significantly lower Psychological/spiritual score (14.6 ±2.2 vs 16.8 ±4.7, p < 0.05) than the non-diabetic patients.
Hong Kong J Nephrol 2000;2(2):98-103.
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Table 2. Satisfaction and importance score ranking.
Ranking Satisfaction Importance Receiving health care Family's health Relationship with spouse Children Emotion support from others Physical independence Dialysis treatment Friends Family happiness Own Job Faith in own religions Potential to live a long time Home Living environment Peace of mind Effort for kidney transplant Happiness in general Standard of living Leisure time Financial independence Own health Life in general Effort in family responsibility Sex life Self Usefulness to others Diet Potential to get off dialysis Personal appearance Stress/worries Happy old age/retirement Education Unemployment Personal goal achievement Ability to travel
1 2 3 4 5 6 7 8 9 10.5 10.5 12 13 14 15 16 17 18 19 20 22 22 22 24 25 26 27 28.5 28.5 30 31 32 33 34 35
7 3 4 1 14 6 9 22 5 17 32 25 16 19 12 11 10 31 26 21 2 13 18 35 23 28.5 20 8 30 28.5 15 27 33 24 34
The futuristic aspect and QOL of CAPD patients
was 17.3 ±3.5 and ranged from 16.4 ±4.2 to 20.3 ±4.5 in the subscale scores. Referring to Dunn et al (21), who classified QOL scores into good (25-30), moderate (2025), fair (15-20) and poor (10-12), our patients on CAPD could be said to have a fair QOL. Comparing with patients in USA (20), our patients had lower QOL scores across all subscales (Health and functioning = 16.4 vs 20.86; Family = 20.3 vs 26.9; Psychological/spiritual = 16.6 vs 24.1; Socioeconomic = 17.7 vs 22.7 and Total QOL score = 17.3 vs 22.7). However, cultural differences and timing of study need to be taken into account on one's perception of QOL. As regards to home-based dialysis, family members could provide both caring and financial support to the patients. In our study, family was highly valued among all life domains by patients on CAPD. Goldberg (22) found a definite change in the value structure in dialysis patients. They valued their families more than material things. However, our patients' divorce rate was four times higher than that of the general population in Hong Kong (23), though the study did not reveal exactly when the patients divorced, before or after started on dialysis. Dunn et al (21) found that spouses of patients on CAPD were experiencing stresses that stemmed from financial burden and fear of death of their partners. This finding supported that married patients had a better social and economic support than divorced or separated patients. Besides, role difference might enable a better acceptance of female patients on their disease and living conditions than male patients. Health and functioning got the lowest score among all subscales of QOL. Own health was perceived to be the most important item but it ranked low in the satisfaction ranking. The dissatisfaction on health could be attributed to the irreversibility of their disease and the dependency on dialysis. Besides, anemia (24), hypoalbuminia (25) and inadequate dialysis (26) may also affect patients' well being.
A total of 28 patients responded to the questions concerning their future. Thirty-six percent of respondents had no idea, 18% expressed a poor sense of control and 26% a negative feeling towards the future. Only 13% had a positive or optimistic view. Transplantation and health were the most important concerns in 39% of respondents. However, 26% of respondents thought that nothing was important in life. Family (16%), job (10%) and financial support (10%) were other areas of concern. Job (22%), psychoemotional state (22%), physical health (19%) and marriage (17%) were being affected.
Being asked on sex-related questions often embarrassed Chinese patients. Sex is a cultural taboo for Chinese, especially in the poorly sexual functioning dialysis patients (27). Dialysis patients often had a decline in sexual activity and functioning (28). Sex-life got the lowest importance ranking among all life items. It seemed that sex-life was perceived as a luxury for dialysis patients taking into account of their poor health and physical functioning status.
DISCUSSION
Satisfaction on Health and functioning and Psychological/spiritual domains were positively correlated with patient's age. Younger patients had a poor
In this study, the overall QOL score of CAPD patient's
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Quality of life in CAPD patient
perception on Health and functioning. It could be due to the high expectation of good health and the detrimental effect of dialysis on their social and physical activities.
Department of the Hong Kong Polytechnic University. REFERENCES 1. Lui SF, Ho YW, Chau KF, Leung CB, Choy BY. Hong Kong Renal
In this study, the working group had a significantly higher QOL score than the unemployed. However, 46% of CAPD patients in working age were unemployed. Job readjustment may be necessary in order to fit in their change in life style. In this study, the median family income was HK$8000 per month. It was lower than the median of HK$17500 for the general population of Hong Kong (29). In fact, patients with higher family income were found to have higher QOL scores.
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Patients receiving social/disability allowance had the lowest QOL score across all subscales. It could be attributed to the poor health, feeling of dependence, low self-esteem and inadequacy of social allowance. Bihl et al (20) identified most of the stressors were due to uncertainty about future in dialysis patients. Ferrans and Powers (30) indicated that dialysis patients only focused on the living for today. Some of the patients mentioned that they dared not think about the future. They expressed a negative feeling for the future. Only one-third of the respondents looked forwards to receiving renal transplantation and considered it the most important aspect of their lives. However, 26% of respondents expressed hopelessness. Ferrans and Powers (30) commented that people tend to adjust their aspiration level to fit with the new circumstances, that in turn restored subjective well-being. The pessimistic thought may be the result of multiple "maladjustments" in their aspiration.
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It is known that there is complex interplay between one's QOL with different social background and environmental factors. However, the present study was limited by the sample size and resources to enable an extensive analysis on such relationships. We conclude that patients on CAPD encountered intense psychosocial stress from difficulties in working, broken family and financial burden attributed to their medical illnesses. The seemingly remote possibility of receiving cadaveric renal transplantation and the long-term dialysis dependency contributed to a poor sense of control in life and led to a pessimistic view of the future. Adequate psychosocial support for these patients is thus essential for them to lead an enjoyable and meaningful life.
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Acknowledgement The authors acknowledge the help of Dr. Samantha MC Pang, Associate Professor of Nursing and Health Care 102
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