Journal of Nursing Research Vol. 15, No. 1, 2007

The Relationships Between Disability Level, Health-Promoting Lifestyle, and Quality of Life in Outpatients With Systemic Lupus Erythematosus Hui-Chuan Huang · Chung-Tei Chou* · Kuan-Chia Lin** · Yann-Fen C. Chao*** ABSTRACT: The purpose of this study was to explore the relationships between disability, health-promoting lifestyle and quality of life in SLE outpatients. Cross-sectional research design and purposive sampling were used in this study. One hundred and twenty-nine SLE outpatients from a medical center were sampled. Questionnaires, including the Visual Analogue Scale, Pittsburgh Sleep Quality Index, and The Hospital Anxiety and Depression Scale, were adopted in order to survey subject disabilities in terms of pain, fatigue, quality of sleep, anxiety, and depression. Health-promoting lifestyle was measured using the Health-Promoting Lifestyle Profile, while quality of life data were collected using Short-Form 36. Hierarchical regressions and a Sobel test were the major statistical procedures employed. Study results indicated that SLE patient self-reported pain and fatigue related to the SLE disease to be 27.7 ± 26.2 and 37.4 ± 26.6, respectively. Seventy-two percent of SLE patients were reported to be troubled by poor sleep quality, while 20%-32% suffered from severe anxiety and depression. The Health-Promoting Lifestyle Profile total score for SLE patients was 61.5 ± 17.2. In terms of SLE patient quality of life (QOL), physical component summary (PCS) and mental component summary (MCS) scores were 45.3 ± 9.1 and 43.8 ± 9.7, respectively. Based on the hierarchical regressions and Sobel test, it was revealed that the health-promoting lifestyle has no significant effect on the physical component summary (p > .05). Fatigue was the mediator factor of health-promoting lifestyle to physical component summary of quality of life. Nevertheless, health-promoting lifestyle has a significant effect on the mental component summary (p < .05). Interestingly, the results showed facilitating health- promoting lifestyle in SLE patient could not enhance physical component summary of quality of life directly without an improvement in fatigue disability; however, facilitating health-promoting lifestyle had a direct and positive effect on the mental component summary of quality of life. Key Words: systemic lupus erythematosus, disability, health-promoting lifestyle, quality of life.

Introduction Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with unpredictable exacerbations and symptomatology that typically affects women of childbearing age (15-40 years old). In Taiwan, the probability of SLE is 75 in every one hundred thousand people (75/ 100,000) (Lee, 2004). Twenty years ago, the five-year life expectancy of those with SLE averaged 5%; however, mor-

tality rates have decreased dramatically with the introduction of new treatment technologies. Today, approximately 90% of SLE patients live at least ten years (Abu-Shakra, Urowitz, Gladman, & Gough, 1995). Concurrently, increased SLE patient survival rates have resulted in increases in the incidence of SLE-related disabilities (Hochberg & Sutton, 1988). SLE patients suffer from various symptoms, including muscle and joint pain, face rashes, headaches, fatigue, Raynauld’s syndrome, renal

RN, MSN, Clinical Instructor, Cardinal Tien College of Nursing; *MD, Director of the Division of Allergy-Immunology-Rheumatology, Taipei Veterans General Hospital; **PhD, Assistant Professor, Graduate Institute of Nursing, National Taipei College of Nursing; ***RN, PhD, Professor & Dean, School of Nursing, National Yang-Ming University. Received: December 7, 2005 Revised: December 6, 2006 Accepted: December 27, 2006 Address correspondence to: Yann-Fen C. Chao, No. 155, Sec. 2, Linong St., Beitou District, Taipei 11221, Taiwan, ROC. Tel: 886(2)2826-7243; E-mail: [email protected]

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pathology, and psychoneurosis, which affect their physical and mental health and may cause disability as well (Dobkin et al., 1998; Jacobsen et al., 1998). Disability not only affects the patients’ physical and mental health, but also limits their ability to perform routine activities and reduces quality of life (Abu-Shakra et al., 1999). Therefore, caring for SLE patient disabilities and improving their quality of life of represent important tasks. Fitzpatrick and Badly (1996) defined “disability” as a condition in which someone cannot complete or finds it difficult to carry out his or her own daily-activities. They also stated that disabilities influence lifestyle and quality of life in significant ways. Ehrlich and Wolfe (1996) claimed that assessments of disability should include pain, psychological distress, fatigue, and sleep disturbance. Studies demonstrated that SLE patients experienced significant fatigue, pain, sleep disturbance, and mood disorders from their disease (Tayer, Nicassio, Weisman, Schuman, & Daly, 2001; Tench, McCurdie, White, & D’Cruz, 2000). Wang, Nancy, and Paul (2001) stated that factors affecting SLE patients’ quality of life include pain, anxiety, depression, difficult daily-activities, and incapability of finishing daily selfcare. A qualitative study also expressed that SLE patients are inclined to feel fatigued, non-energetic or disabled during their daily-activities (Archenholtz, Burckhardt, & Segesten, 1999). They felt uncertain of disease progress and felt unable make plans related to the future, social support, work, and salary. According to the literatures, SLE patient have problems with physical and mental disability problems that affect daily activity and reduce quality of life. Stuifbergen and Roberts (1997) proposed a quality of life model for chronically disabled patients. The model shows that health promotion behaviors were the most important factors affecting illness severity and quality of life. Executing a health-promoting lifestyle can improve disabled patient quality of life. Several studies have demonstrated that undertaking a health-promoting lifestyle may maintain and promote independence, health status and quality of life, while preventing premature death and secondary disabilities in chronically disabled patients like those suffering from multiple sclerosis (Stuifbergen, Seraphine, & Roberts, 2000; Tuifbergen, Becker, Roberts, Timmerman, & Kullberg, 2003). Many relevant factors, including disease activity, fatigue, and mood disorders

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combine to affect SLE patient quality of life (Thumboo et al., 2000). Concerning disability, significant research has focused on the influence of arthritis on normal activity (Hochberg & Sutton, 1988; Sharon et al., 1993). In terms of other SLE symptoms such as fatigue and mental disorder, only a few researches on these subjects can be found. Due to the abundance of potential factors that can influence SLE patient disability, whether these factors directly affect health-promoting lifestyle to increase quality of life is still unclear. There is no study that describes the healthpromoting lifestyle of SLE patients or examines relationships between disability, health-promoting lifestyle and quality of life. For this reason, there is limited supporting data related to the design of feasible health-promoting interventions in order to elevate the quality of life of SLE patients in Taiwan. Therefore, the purposes of this study were to: (1) describe the level of disability, healthpromoting lifestyle, and quality of life among SLE patients and (2) explore the relationships between disability, healthpromoting lifestyle, and quality of life.

Methods A cross-sectional research design was used in this study. Purposive sampling was used to recruit a total of 129 SLE patients from a rheumatology outpatient clinic of a medical center in Taipei, Taiwan. The inclusion criteria for SLE patients were: (1) over 17 years of age; (2) conforming to the ACR (American College of Rheumatology) diagnosis of SLE; and (3) having never been diagnosed with psychosis or a mental disorder. Questionnaires were filled out anonymously. For ethical considerations, participants were provided information regarding the purpose of the study as well as their rights to confidentiality and anonymity. Participants were also advised of their right to withdraw from this study at any time without any negative repercussions.

Instruments The constructed questionnaire consisted of four parts, namely (1) disease activity, (2) disability, (3) healthpromoting lifestyle, and (4) quality of life. A preliminary study was made to test instrument appropriateness and accessibility for subjects. The preliminary study also tested internal consistency with alpha coefficients to ensure questionnaire reliability. Disease activity was measured using

Disability, Lifestyle, and QOL of SLE Outpatient

the SLE Disease Activity Index (SLEDAI), developed in Toronto at the 1985 Conference on Prognosis studies in Lupus. The SLEDAI includes 24 descriptors in 9 organ systems that assign severity weightings. While the perfect score is 105, a score of 10 is considered clinically important in terms of physicians’ diagnoses of clinical manifestation severity, degree of laboratory abnormality, and urgency of treatment (Bombardier et al., 1992). The SLEDAI scale has shown good convergent validity and the highest reliability of available indices (Liang, Socher, Larson, & Schur, 1989). According to Ehrlich and Wolfe (1996), the operational definition of disability covers pain, fatigue, psychological distress, and sleep disturbance. In this study, disability in SLE patients was measured by the variables pain, fatigue, quality of sleep, anxiety, and depression. A 100 mm self-rated Visual Analogue Scale (VAS) was used to measure pain and fatigue experienced by an SLE patient in completing his/her daily-activities under general conditions. The VAS scale scores correlated positively with pain and fatigue severity. Studies have demonstrated the VAS a valid and reliable instrument for assessing levels of fatigue and pain (Lee, Hicks, & NinoMurcia, 1990). Quality of sleep was measured using the Pittsburgh Sleep Quality Index (PSQI), which contains 9 different items and generates an overall score between 0 and 21. A PSQI score of 5 or greater indicates quality of sleep is being disturbed. The original PSQI scale has high internal consistency, with a Cronbach’s alpha of .83. Validity was described by sensitivity and specificity. The global PSQI score “> 5” yielded a diagnostic sensitivity of 89.6% and specificity of 86.5% in distinguishing good and poor sleepers (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989). Internal consistency with Cronbach’s alpha of the PSQI scale in the study was .74. Anxiety and depression were measured using the Hospital Anxiety and Depression Scale (HADS). The scale is a 14-item questionnaire that generates separate scores for anxiety and depression between 0 and 21. A score of 7 or below is considered “normal”. A HADS score of 8 or above indicates potential mood disorders, with each point increase associated with a similar increase in depression or anxiety severity. Validity was described by sensitivity and specificity. A total HADS score of 8 or above was the opti-

J. Nursing Research Vol. 15, No. 1, 2007

mal cutoff point for depression and anxiety disorders. Sensitivity was .90 and specificity was .90 for the depression subscale. Sensitivity was .95 and specificity was .90 for the anxiety subscale (Zigmond & Smith, 1983). The Chinese version of Hospital Anxiety and Depression Scale scales were found to have good internal consistency, with a Cronbach’s alpha of .84 (Juang, Wang, Lin, & Fu, 1999). In this study, internal consistency with Cronbach’s alpha of the anxiety subscale and depression subscale was .78 and .82, respectively. The Chinese version of the Health-Promoting Lifestyle Profile (HPLP), which measures lifestyle characteristics, was translated by Chen in 1983. Study participants rated their health-promoting lifestyle within the six domains of self-actualization, interpersonal-support, stressmanagement, nutrition, health-responsibility, and exercise. Each item was rated in a four-point Linker-type answer format ranging from (0) “never” to (3) “always”. The scale has been widely used in research on chronically ill populations and translated and validated in Chinese settings. The Cronbach’s alpha of HPLP scale was .92, with the validity of, each subscale between .69 and .84 and a construct validity of .48 (Chen et al., 1997). In the pilot study, Cronbach’s alpha was .68 for HPLP and .53-.86 for subscales. The HPLP was revised to delete items with low Cronbach’s alpha scores, which included “observe my body at least monthly for physical changes/danger signs”, “express concern/love”, “express feelings”, and “no preservatives”. The instrument generated an overall potential score range between 0 and 108, with a higher score indicating greater health-promoting lifestyle behavior. The internal consistency with Cronbach’s alpha of the Chinese version HPLP used in this study was .92. Each subscale also has good internal consistency and cronbach’s alpha ranged between .75 and .84. Quality of life was measured by the SF-36, which comprises 8 subscales integrating two summary scales - a physical component summary (PCS) and a mental component summary (MCS). PCS consists of physical functioning, role-physical, bodily pain, and general health perceptions. MCS consists of vitality, social function, roleemotional, and mental health. The physical component summary and mental component summary have been standardized to have a mean of 50 and standard deviation of 10, with higher scores reflecting better quality of life (Ware,

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1988). SF-36 has been used to measure SLE patient quality of life with good validity and a Cronbach’s alpha between .72 and .91 (Thumboo et al., 2000). The Cronbach’s alpha of the SF-36 in this study was .78-.80.

Hui-Chuan Huang et al.

were unemployed. Forty percent had a mean income lower than 25,000 NT dollars per month. In terms of disease activity, the mean SLEDAI score was 6.9 ± 4.3, mean disease duration was 7.5 ± 6.9 years, and mean age of disease onset 30.0 ± 10.3 years of age.

Statistical Analysis Data was analyzed using SPSS/PC 11.0 for Windows. Descriptive statistics including means, standard deviations, frequency, and percentage were calculated for all variables. Multiple regression analysis was conducted to study the relationship between health-promoting lifestyle and QOL. Model 1 used health-promoting lifestyle total scores as the independent variable and Model 2 used each health-promoting lifestyle domain as the independent variable. Hierarchical forward regression models were further built to determine the independent effects of disability and health-promoting lifestyle on QOL. In step 1, researchers used the total score for health-promoting lifestyle as the primary independent variable. Step 2 then tested the effect of health-promoting lifestyle total score by adding disability variables as a function of covariates, including pain, fatigue, quality of sleep, anxiety, and depression. In addition, the Sobel test was applied to test the mediated effect of disability on the relationships between health-promoting lifestyle and QOL. The Goodman version of the Sobel test was performed by using SAS statistical software for Windows version 8.2 (SAS institute, Cary, NC) and can be used to describe the relationship between three or more variables (Dudley, Benuzillo, & Carrico, 2004). It was calculated to determine whether the effect of health-promoting lifestyle on QOL was reduced to zero in the presence of the mediator. As the Sobel test equation, with its corresponding p value, is less than .05, the meaning of mediator is incomplete. In addition, when the p value is not significant, it has a complete mediating effect.

Results Demographic Subject Data Table 1 shows a summary of participant demographic characteristics. The mean age of SLE patients was 37.4 (SD = 10.7). Females were in the majority (91.5%). Most were married (62.0%) and had high levels of education (55.1%). Nearly half of the SLE participants (48.8%)

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The Disability, Health-Promoting Lifestyle, Quality of Life of Subject Table 2 illustrates that SLE patient self-reported pain was 27.7 ± 26.2 mm, while the self-reported fatigue was 37.4 ± 26.6 mm. In terms of quality of sleep, 72% of SLE patients had scores of more than five on the Pittsburgh Sleep Quality Index. In terms of anxiety and depression, most subjects had scores below seven on the Hospital Anxiety and Depression Scale. Some 20%~32% of subjects exhibited anxiety and depression problems considered “severe”.

Table 1. The Description of SLE Patient of Study Subjects (N = 129) n

%

1180 11

91.5 08.5

Marital Status Unmarried Married

49 80

38.0 62.0

Education £ 12 yrs > 12 yrs

58 71

44.9 55.1

Employment Unemployed Part-time Full-time

63 10 56

48.8 07.8 43.4

Income (per month) £ NT$ 25000 > NT$ 25000

52 77

40.3 59.7

Variable

M ± SD

Age

37.4 ± 10.7

SLEDAI Scores

06.9 ± 04.3

Age of Onset

30.0 ± 10.3

Disease Duration

07.5 ± 06.9

Gender Female Male

Note. SLEDAI = Systemic Lupus Erythematosus Disease Activity Index.

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Table 2. Description of SLE Patient Disability Symptoms, HealthPromoting Lifestyles and Quality of Life (N = 129) Variable Disability Pain Fatigue Quality of sleep £5 >6

M ± SD

n

%

36 93

28 72

88 41

68 32

1030 26

80 20

27.7 ± 26.2 37.4 ± 26.6 07.4 ± 03.6

Anxiety £7 >8

05.8 ± 03.9

Depression £7 >8

04.7 ± 03.8

Health-Promoting Lifestyle Self actualization (8 items) Health responsibility (7 items) Personal support (4 items) Exercise (6 items) Stress management (6 items) Nutrition (5 items) Total scores (36 items)

14.9 ± 05.3 08.5 ± 04.0 08.3 ± 02.5 06.3 ± 03.7 11.4 ± 03.4 11.3 ± 02.6 61.5 ± 17.2

Quality of Life Physical component summary Physical function Role physical Body pain General health

45.3 ± 09.1 48.9 ± 08.1 43.1 ± 11.6 49.1 ± 08.9 41.0 ± 10.2

Mental component summary Vitality Social function Role emotional Mental health

43.8 ± 09.7 49.4 ± 09.1 46.0 ± 07.7 41.9 ± 13.3 42.9 ± 09.3

The mean total for Health-Promoting Lifestyle Profile was 61.5 (SD = 17.2). Mean scores in the six healthpromoting lifestyle profile domains were as follows: selfactualization: 14.9 (SD = 5.3); health responsibility: 8.5 (SD = 4.0); personal support: 8.3 (SD = 2.5); exercise: 6.3 (SD = 3.7); stress management: 11.4 (SD = 3.4); and nutrition: 11.3 (SD = 2.6). In terms of quality of life, physical and mental component summary scores were 45.3 (SD = 9.1) and 43.8 (SD = 9.7), respectively.

Contributors to SLE Patient Quality of Life Table 3 displays the results of multiple regressions on the relationship between health-promoting lifestyle and QOL. In Model 1 (using the health-promoting lifestyle total scores as the independent variable), results revealed the health-promoting lifestyle total score as significantly associated with the physical and mental component summary of QOL. In Model 2 (using each separate domain of Health-Promoting Lifestyle Profile as the independent variable), results revealed the separate domains of healthpromoting lifestyle as not having significant effects on quality of life (Table 3). Table 4 shows the results of hierarchical forward regression of disability and health-promoting lifestyle on QOL. In step 1, the health-promoting lifestyle total score, a value significantly related to the physical and mental component summary, was used as an independent variable. In step 2, after adding disability variables, the independent variables associated with QOL factors included: (1) physical component summary conducted by pain (b = -0.11, p < .05) and fatigue (b = -0.09, p < .05), and (2) mental component summary conducted by fatigue (b = -0.09, p < 0.5), anxiety (b = -1.25, p < .05) and depression (b = -0.45, p < .05). Nevertheless, the effect of health-promoting lifestyle was no longer significantly attributable to QOL. Table 5 illustrates the results of the Sobel test of mediated effect of disability on the relationships between health-promoting lifestyle and QOL. Results reveal that disability variables have a significant mediating effect on relationships between health-promoting lifestyle and QOL. Firstly, in the relationship between physical component summary and health promoting lifestyle, we found health-promoting lifestyle not significantly correlated with QOL after controlling for fatigue. The Goodman version of the Sobel test further demonstrated that approximately 73.1% variation was mediated by fatigue (t = 3.53, p < .05). Secondly, in the relationship between mental component summary and health-promoting lifestyle, we found health-promoting lifestyle still significantly correlated with QOL after controlling for fatigue, anxiety and depression. The Goodman version of the Sobel test further demonstrated that approximately 55.7%. 42.5% and 30.9% variation were mediated by fatigue (t = 4.57, p < .05), anxi-

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Hui-Chuan Huang et al.

Table 3. The Effects of Health-Promoting Lifestyle and Disability Variables on Quality of Life: Multiple Regression Model 1 b

Predictor Physical Component Summary (PCS) Health-promoting lifestyle total scores Self actualization Health responsible Personal support Exercise Stress management Nutrition

0.13

Model 2 2

t

R

0.24*

.06

b NA

NA NA NA NA NA NA

Mental Component Summary (MCS) Health-promoting lifestyle total scores Self actualization Health responsible Personal support Exercise Stress management Nutrition

0.27

t

0.34 -0.060.81 -0.04-0.220.12 0.47*

.22

1.31 -0.231.97 -0.16-0.490.32 NA

NA NA NA NA NA NA

0.29 0.06 -0.340.10 -0.00-0.10-

1.48 0.29 -1.150.54 -0.00-0.31-

Note. Model 1: Using health-promoting lifestyle total scores as independent variable; Model 2: Using health-promoting lifestyle separate domain as independent variable. NA = non analysis. *p < .05.

Table 4. The Effects of Health-Promoting Lifestyle and Disability Variables on Quality of Life: Hierarchical Regression (Type ISS) Physical component summary

Mental component summary

b

t

b

t

Step 1 Health-promoting lifestyle total score

0.13

00.24*

0.27

00.47*

Step 2 (add mediator variables) Health-promoting lifestyle total score Pain Fatigue Quality of sleep Anxiety Depression

0.05 -0.11-0.09-0.080.01 -0.15-

1.21 -3.50* -2.74* 0.90 0.14 -1.780

0.05 0.06 -0.09-0.02-1.25-0.45-

1.38 0.76 -3.87* -0.26-7.43* -2.58*

Item

Note. Physical component summary (PCS): 47.8 - (0.11 ´ pain score) - (0.09 ´ fatigue score). R2 = .32; Mental component summary (MCS): 54.7 - (0.09 ´ fatigue score) - (1.25 ´ anxiety) - (0.45 ´ depression). R2 = .62. *p < .05.

ety (t = 3.95, p < .05) and depression (t = 3.37, p < .05), respectively. Consequently, results suggest fatigue as the most important influence on the physical component summary aspect of QOL. Nevertheless, in terms of the mental com-

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ponent summary aspect of QOL, fatigue, anxiety, and depression have partial influences. Stimulating a healthpromoting lifestyle in the SLE outpatient may have a positive effect on fatigue and raise the physical component summary aspect of QOL; however, stimulating a health-

Disability, Lifestyle, and QOL of SLE Outpatient

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Table 5. The Mediated Effect of Disability on Relationships Between Health-Promoting Lifestyle and Quality of Life Regression test DV

IV

PCS

Health promoting lifestyle

Mediator Pain

Health promoting lifestyle Fatigue MCS

Health promoting lifestyle Fatigue Health promoting lifestyle Anxiety Health promoting lifestyle Depression

Sobel test

t

b

2.24* -6.50*-0.80-* 6.04* 3.14* -9.38*0 3.34* -5.16*0 4.28* -5.38*0

0.09 -0.170 0.00 -0.170 0.12 -1.560 0.15 -1.080 0.18 -0.150

t

Mediation (%)

1.64*

30.1

3.53*

73.1

4.57*

55.7

3.95*

42.5

3.37*

30.9

Note. DV = dependent variable; IV = independent variable; PCS = physical component summary; MCS =mental component summary. *p < .05.

Health-Promoting Lifestyle

Disability Fatigue

Quality of Life Physical component summary

Health-Promoting Lifestyle

Disability Fatigue, depression, anxiety

Quality of Life Mental component summary

Figure 1. Relationships between health-promoting lifestyle, disability, and quality of life.

promoting lifestyle may also affect the mental component summary aspect of QOL directly. The flow of these relationships is depicted in Figure 1.

Discussion Health-Promoting Lifestyle Behavior in SLE Patients This study found that SLE patients have poor healthpromoting lifestyle behavior. This finding is similar to two studies done over the past decade that indicate Taiwanese aged from 18 to 65 display poor lifestyle behavior, with scores of 63.9 and 62.1, respectively (Chiou & Ho, 1996; Lin et al., 2003). According to the standard indicators included in the Health-Promoting Lifestyle Profile (HPLP), patient receives a score of two points for each HPLP activity when that activity is performed more than three times per week. In this study, data showed an average score for

each HPLP activity of less than 2 points, suggesting that most SLE patients engage in health promotion behavior activities, e.g., health-responsibility, self-actualization, stress-management, exercise, personal-support, and nutrition, less than three times per week. In the United States, promoting healthy lifestyles is a key element in strategies targeting both disease prevention and better public health. (U.S. Department of Health and Human Services, 2000). Therefore, improving overall health-promoting lifestyle is an important issue for SLE patients.

SLE Patient Disability In this study, according to hierarchical regression results, fatigue and pain represented predicting factors of the physical component summary aspect of QOL. Findings revealed fatigue to be a mediating factor, mediating 73.1% of the variance in health-promoting lifestyle to the physical component summary aspect of QOL. Bruce, Mark, Hallett,

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Gladman, and Urowitz (1999) have found fatigue severity to be correlated with QOL and SLE patients with higher fatigue severity more likely to have a poor health status. Tench et al. (2000) also stated fatigue, associated with a diminished ability in performing daily-activities, to be a common symptom experienced by individuals with SLE. Based on these results, fatigue represents an important QOL factor for the SLE patient. In addition, the study proved that SLE patients suffered more fatigue when they engaged in activity/exercise, which might lead a worsening in quality of life (Zonana-Nacach et al., 2000). Keyser et al. (2003) demonstrated that the lack of activity tolerance of SLE patients may negatively affect their activity performance. The finding that SLE patients experienced more fatigue with activities than without activities may negatively influence daily activity and personal interaction. In this study, self-reported fatigue was measured upon SLE patients’ completion of general daily-activities, without exercise. The fact that SLE patients report fatigue after carrying out general daily-activities lends support to the argument that, fatigue may act as a major factor affecting patient physical health and reducing quality of life. In contrast, Robb-Nicholson et al. (1989)’s finding that fatigue and aerobic capacity correlated inversely with aerobic exercise in a group of SLE patients argued, conversely, the feasibility of promoting SLE patient daily-activity capacity. In this study, we found that, while health-promoting lifestyle does directly affect the physical component summary of QOL, this influence was mediated by fatigue. Therefore, it is more beneficial to provide the SLE patient with adequate intervention associated with fatigue, thus improving their QOL physical component summary. The true causal relationship may have important implications for treatment; a supposition that remains to be determined in future studies. This study revealed that pain was not a mediating factor in health-promoting lifestyle to physical component summary aspect of QOL. In this study, we did not examine factors associated with pain. Nevertheless, SLE patients had an average score of 6.9 ± 4.3 in disease activity, which indicated their disease activity might have stabilized and should not interrupt their pursuit of a healthy lifestyle. A statement issued at the Exercise and Physical Activity Conference in Missouri in 2002 (Marian, 2003) notes that people suffering from a variety of Rheumatology diagno-

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Hui-Chuan Huang et al.

ses should be encouraged to be more active. Health People 2010 Reports have also stated that reducing limitations to activities in patients with autoimmune diseases is a major goal for the future. Therefore, even though SLE patients may experience pain, exercise could be encouraged. It is beneficial to for SLE sufferers to pursue a suitable healthpromoting lifestyle to reduce the severity of pain and possibly promote physical component summary of QOL. The essential predictors of mental component summary of QOL included fatigue, anxiety, and depression. Predictive factors were also proven to be incomplete mediator factors of health-promoting lifestyle in terms of the mental component summary aspect of QOL. Related studies have demonstrated that fatigue and psychosocial factors significantly influenced SLE patient QOL (Burckhardt, Archenholtz, & Bjelle, 1993; Tench et al., 2000). Omdal, Husby, and Mellgren (1995) reported that SLE patients experienced greater difficulty in the areas of coping, feelings of incompetence and social dysfunctions that influenced patients’ mental well-being. Therefore, this is an important issue that must be addressed to help SLE patients reorient their life and mental outlook in order to achieve improved mental health. Although fatigue, depression, and anxiety have significant affects on the mental component summary aspect of QOL, this study demonstrated that overall health-promoting lifestyle has a direct effect on mental component summary. A health-promoting lifestyle, which includes self-actualization, health-responsibility, personal-support, exercise, stress-management, and nutrition, might have a more effective and positive impact upon SLE patient mental component summaries. Therefore, administering health-promoting intervention for SLE has the potential to reduce fatigue and mood disorder severity, which can then promote the mental component summary of QOL. In this study, we found that 72% of SLE patients experience sleeps disorders; however, quality of sleep is not a QOL predictive factor. Tench et al. (2002) identified a correlation between fatigue and quality of sleep. SLE patients have been reported to experience significantly higher fatigue and significantly worse sleep quality. Mckinley, Ouellette, and Winkel (1995) proved the model that correlated fatigue to sleep patterns. They found that SLE patient attempt to get “enough” rest and sleep in an attempt to control fatigue and other syndromes. Therefore, fatigue is more important than quality of sleep. In addition, Lin

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(1994) stated that SLE patients tend to experience insomnia with steroid therapy. From SLE patients with relatively mild cases of the disease in this study, we may surmise that most SLE patients take more steroids that, in turn, influence quality of sleep. Based on these results, it may be an important issue for SLE patients to develop non-pharmacological intervention programs to control disease severity and promote improvement in disabilities.

intervention is designed to focus on fatigue, the physical component summary of quality of life may be indirectly promoted. No matter what the disability factor is, the mental component summary has been affected directly by health-promoting lifestyle. The results of our study can provide further studies with valuable information to plan and formulate health-promoting lifestyle interventions and to improve quality of life of the SLE outpatients.

Relationships Between Disability, HealthPromoting Lifestyle, and Quality of Life

Limitations

Study results demonstrated that facilitating a healthpromoting lifestyle in SLE patients has an indirect effect on the physical component summary of QOL, except under conditions where fatigue disability has been improved. Nevertheless, facilitating a health-promoting lifestyle has a positive effect on the mental component summary of QOL. It has been confirmed that encouraging health-promoting lifestyle interventions can help maintain and raise disabled patient quality of life (Stuifbergen & Becker, 1994). A study also showed pursuing a health-promoting lifestyle to be an important and effective strategy in retaining and enhancing independence, health status and quality of life for multiple sclerosis (MS) patients (Stuifbergen et al., 2000). MS patients with chronic progressive conditions are more likely to need greater assistance and adaptation to enhance their ability to confront their disease (Stuifbergen & Roberts, 1997). Since SLE patient disabilities are similar to those of MS patients, SLE patients may tend to have similar problems with coping to achieve adaptation. They likely require information and guidance in areas such as exercise safety, spiritual growth, stress adaptation, interpersonal relationships, and suitable nutrition replacement. In this study, we found that six HPLP domains have no effect on QOL. Results showed that only centering on a single HPLP domain did not promote SLE patient quality of life. Therefore, providing an overall health promotion education that spans multiple domains for the SLE patients is critical. Moreover, it is more effective to teach the SLE patient to develop a health-promoting lifestyle related to disability factors, like fatigue, in order to improve quality of life.

Conclusions Our findings demonstrated that the main influence in the quality of life of the SLE outpatients was fatigue. When

Several limitations were noted for this study. Firstly, findings cannot be generalized to the general SLE patient population due to the limitation of the subject population to SLE patients located in northern Taiwan. Secondly, the disability questionnaire is limited to the factors of pain, fatigue, quality of sleep, anxiety and depression. Other factors potentially affecting QOL, such as the disease symptoms of arthritis and fibromyalgia (Blanco et al., 1998; Dobkin, Da Costa, Fortin, Edworthy, & Barr, 2001), were not examined. Thirdly, as a cross-sectional design was used in this study, examining causal relationships between variables is not possible.

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門診紅斑性狼瘡患者失能狀況、生活型態與生活品質

門診紅斑性狼瘡患者失能狀況、健康促進生活型態 與生活品質之相關性探討 黃惠娟

摘

周昌德*

林寬佳**

邱艷芬***

要： 本研究目的主探討門診紅斑性狼瘡患者失能狀況、健康促進生活型態與生活品質之 相關性。採橫斷性研究設計，以立意取樣方式，選取北部某醫學中心 129 位門診全身性 紅斑狼瘡患者 (systemic lupus erythematosus, SLE) 為研究對象。測量工具包含以視 覺類比量表 (Visual Analogue Scale)、匹茲堡睡眠品質量表 (Pittsburgh Sleep Quality Index) 及醫院焦慮及憂鬱量表 (The Hospital Anxiety and Depression Scale) 評估疼 痛、疲倦、睡眠品質、焦慮和憂慮等失能狀況；以健康促進生活型態量表 (HealthPromoting Lifestyle Profile) 測量其健康促進生活型態；及採 Short-Form 36 評估生活 品質。主要採用之統計方法為 Hierarchical regression 及 Sobel test。研究結果顯示， 於失能狀況方面，SLE 患者疾病相關之自覺疼痛及疲倦情形為 27.7 ± 26.2 及 37.4 ± 26.6，72% SLE 患者顯著睡眠品質不佳，而約 20%−32% SLE 患者具嚴重焦慮及憂鬱 問題；在健康促進生活型態部份，SLE 患者健康促進生活型態得分為 61.5 ± 17.2； 在生活品質方面，整體生理健康構面得分為 45.3 ± 9.1，整體心理健康構面得分為 43.8 ± 9.7。經 Hierarchical regression 及 Sobel test 分析顯示，健康促進生活型態對生活品 質之整體生理健康構面無顯著影響 (p > .05)，疲倦為其主要影響因子且具中介效應； 健康促進生活型態對整體心理健康構面則具顯著影響作用 (p < .05)；因此促進門診 SLE 患者健康生活型態，需藉由疲倦狀況的改善，才有助於提昇生活品質之整體生 理健康構面，然而執行健康促進生活型態對整體心理健康構面則具直接影響效果。

關鍵詞： 全身性紅斑狼瘡、失能狀況、健康促進生活型態、生活品質。

耕莘護理專科學校實習指導教師 *台北榮民總醫院過敏免疫風濕科主任 **國立台北護理學院護理研究所 助理教授 ***國立陽明大學護理學院教授暨院長 受文日期：94 年 12 月 7 日 修改日期：95 年 12 月 6 日 接受刊載：95 年 12 月 27 日 通訊作者地址：邱艷芬 11221 台北市北投區立農街二段 155 號

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