• Use of Complementary and Alternative Medicine
• Impact of Steroid Use on Weight Gain
• Importance of Function in Rheumatoid Arthritis
• Chronic Illness and Happiness
• Role of Spirituality in Rheumatoid Arthitis

Use of Complementary and Alternative Medicine
The use of complementary and alternative medicine (CAM) therapies among patients with rheumatoid arthritis to manage their illness is poorly understood. Two studies presented at ACR in San Francisco suggest the prevalence of CAM is growing in both adults and children with rheumatic disorders.

Abstract 948 Use of Complimentary Therapies Amongst Patients with Rheumatoid Arthritis
LC Li, A Maetzel, J Pencharz, L Maguire, C Bombardier, Toronto, Canada.

Abstract 1339 The Use of Complementary and Alternative Medicine (CAM) By Pediatric Rheumatology Patients
LEM Hagen, R Schneider, D Stephens, D Modrusan, BM Feldman.

The first study evaluated the use of CAM in adults. Investigators in Toronto, Canada recruited 253 patients from 53 rheumatologists into a study of CAM. Participants were interviewed at baseline and three months later between October 1999 and July 2000. Mean (+ SD) age was 57 + 13 years and disease duration of 13 + 9 years.

A total of 70% of the adults reported use of CAM therapies. Chiropractic visits were the most common used method (41%), followed by massage therapy (22%) and acupuncture (14%). Slightly more than one third (i.e. 36%) had used glucosamine/chondroitin and 16% had used homeopathic remedies. Other therapies reported that were used less frequently included nutritional supplements and yoga. CAM therapies were often used primarily to treat the persons arthritis (glucosamine = 60%; homeopathic remedies 37%). Users of CAM were more likely to be female and report more comorbid conditions. Many of those surveyed individuals used CAM therapies on an ongoing basis. Slightly more than half (i.e., 55%) discussed their use of complementary therapies with their health care providers.

A second group of investigators evaluated the current use of CAM in pediatric rheumatology patients. A total of 141 families of children with rheumatologic disorders seen in tertiary care centers in were surveyed (90 clinic attendees and 51 mail respondents). The children with rheumatic diseases were mostly female (1.8:1 female/male ratio), with a mean age of 10 years. 64% of children were using at least one form of CAM and 50% were using more than one form of CAM. Among CAM products, nutritional supplements (excluding those recommended by a health care provider) were common with 22% of children taking vitamins and minerals. Other common forms of CAM included use of relaxation (14%), copper jewelry (11%) and herbal remedies (11%). Thirteen percent of children were receiving chiropractic services. Use of CAM was positively associated with duration of illness and mail respondents. These results suggest that current CAM use among pediatric patients is also high (i.e., 64%).

Editorial Comment: Taken together, these studies suggest that the use of CAM is much more widespread than previously thought among both adults and children with arthritis and other rheumatic diseases and are consistent with similar findings of Rao, et al . Results must be viewed as preliminary, given the significant limitations in study design and methods. Nevertheless, these findings support clinical observations that CAM use is prevalent among persons with rheumatic diseases. In addition, use of CAM is likely to increase in light of recent policy shifts (e.g., in Washington State) that emphasize broader inclusion of CAM therapies eligible for reimbursement by third party payers.

Of concern is the finding that CAM use is discussed by only 55% of patients with their primary care providers and specialists. An important question is why nearly half of all patients do not discuss CAM use with their primary health care providers or medical specialists. There are clear benefits to encouraging open and honest discussions with patients about their interest in and use of CAM therapies. For instance, treatment may be more effectively coordinated and potentially harmful interactions or side effects can be avoided. Give the prevalence of use of nutritional supplement use, both in adults and children, more systematic monitoring of micronutrient intake may be indicated.

Routine querying of patients regarding their use of CAM therapies should be incorporated into all clinical visits, as CAM use appears to change over time. Opportunities for open discussions will be optimized when the patients interest and experience with CAM therapies is discussed in a supportive and non-judgmental environment. Research using rigorous scientific methods is needed to better define CAM use, identify prevalence and evaluate associated outcomes.,/font>

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Corticosteroids are the mainstay of treatment for many pediatric and adult rheumatology diseases. One of the most devastating yet relatively unstudied side effects of steroids is weight gain. Little is known about the relationship between steroid initiation, chronic use, and changes in body weight and composition or methods to forestall or prevent significant weight gain. A study by Canadian researchers presented at the ACR Annual Meeting in San Francisco evaluated the amount and rate of weight gain among children and youth placed on high dose steroid regimens.

Chart reviews were conducted on 15 patients (median age 13 years). Eleven of the children were diagnosed with SLE; three children had JDMS and one had PAN. High dose steroid use was associated with significant weight gain. Eleven of the 13 children gained from 6% - 70% of their initial body weight. Prior to beginning steroid therapy, only one child was overweight, while 6 months later 11 children were overweight (i.e., > 85%ile for BMI). Two years later, 7 children remained overweight. Weight loss in some of the children coincided with a decrease in prednisone to a mean of .22 mg/kg at 11 months into treatment. However, over 50% of the children did not return to their baseline weight when prednisone was stopped or decreased.

Editorial Comment: Assessing weight gain in developing children and youth is complex, and the small sample size and methods in this study compromise interpretability of the findings. Nevertheless, these very preliminary results clearly demonstrate that high dose steroids are associated in significant weight gain among children, findings that are indeed alarming.

Pediatric obesity is a significant public health problem. The prevalence of overweight (i.e., BMI > 85 %ile) is 22% and the prevalence of obesity is 11% (Johnson, et al. Arch Pediatr Adolesc Med 149, 1995). The prevalence of obesity in children is near epidemic, reflecting a doubling of the rate over the past 20 years. Overweight and obesity is associated with many of the same risks in children as seen in adults (Deckelbaum and Williams. Obes Res 9(5), 2001). Most overweight and obese children will remain overweight as adults. Moreover, risks remain elevated for adults who were overweight as children, even if they lose the extra weight during adulthood.

Negative psychosocial outcomes are commonly observed for overweight children including ostracization from their peers, frequent teasing, impaired peer interactions, and development of eating disorders negative effects on psychosocial development that may persist throughout adulthood. The negative physical and psychological consequences of overweight and obesity in adults are well documented. Given the widespread need for corticosteroid therapy among persons with rheumatic diseases, research is needed to identify methods to address weight gain associated with high dose steroid therapy.

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Physical functioning is often a primary outcome measure in rheumatoid arthritis studies. Two of the most commonly used measures are The Health Assessment Questionnaire (HAQ) and the SF-36. The HAQ focuses on activities of daily living, while the SF-36 (and in particular the Physical Component Summary [PCS] of the SF-36) assesses general physical functioning. These measures are generic in orientation and are useful is comparing functioning levels across medical conditions.

However, understanding a patient's functional level tells us little about how patients are doing in terms of their overall well being when living with their illness. One reason for this may be that measures such as the HAQ and SF-36 query activities such as the ability to dress, bathe, and ambulate independently - all markers of functioning that have been identified as being important to patients by investigators.

The value and importance that individuals place on different activities varies widely. Emerging research suggests that when patients are allowed to define the activities they consider personally meaning (i.e., valued life activities), this type of function is more closely associated with psychological well-being. Examples of patient-defined valued life activities are leisure activities (e.g., going to movies), taking care of family members, hobbies and recreational activities such as gardening.

In this abstract Katz, et al assessed the relationship between satisfaction with functioning and three measures of physical function: the HAQ, PCS of the SF-36, and Valued Life Activities (VLA). Subjects were 301 patients currently enrolled in an observational study and who had previously participated in etanercept clinical trials. The sample was mostly female (79%), white (95%) with a mean age of 56 + 11 years. Functional scores (HAQ 1.1 + 0.7, PCS = 35.0 + 12.1 and VLA = 6.2 + 4.9) suggested that patients RA was reasonably well controlled, and participants reported they were relatively satisfied with the currently level of function (mean satisfaction = 3.9 on a 5 point Likert scale; 5 = very satisfied).

Mean satisfaction with function was moderately associated with each of the measures of physical function (r's .56 to .63, p's < .0001). However, in multiple regression, Valued Life Activities accounted for 9% (p <.0001) of the variance, while PCS accounted for 1% (p = .008) and HAQ < 1% (p = .08; model r² = .53), even after controlling for demographic and clinical characteristics. The investigators concluded that VLA was the type of function most closely associated with patient's satisfaction with function.

Editorial Comments: Studies that expand the types of functional assessments used, including assessments that most closely reflect patients' values, will provide better measures of patient's satisfaction with function. For clinicians, this approach is consistent with an empathic and patient-centered approach in illness and treatment outcomes are viewed the patient's frame of reference. Among researchers, better measures of satisfaction with function may provide insight into methods to enhance psychological well-being in patients living with chronic illnesses.

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Dr. Christiansen began his address with two observations on everyday life. The first was the observation that one of the first things we ask someone we are meeting for the first time is what they do. The second observation centered on the traditional greeting we use when addressing those we know. Typically, this is a variation on the theme "How are you doing?" Doing, Christiansen argued, is an essential process of everyday life. What we do is the most fundamental organizing principle of each person's life that is inextricably linked to both our sense of identity and the meaning we give our lives.

Over the next hour, Dr. Christiansen presented a thought-provoking and informative overview on the complex interactions that influence psychological well-being among persons who live with a chronic illness. Christiansen noted how definitions of health have growth, from early notions that equated health to the absence of disease to current perspective that incorporate broader definitions. The Institute of Medicine and World Health Organization, among others, integrate function, disability, as well as environmental and personal factors into their current definitions of health and wellbeing.

The point is an important one, and may explain, in part why functional level and quality of life in persons with chronic illnesses are not closely linked. Researchers and clinicians have long observed that individuals with comparable levels of disease often vary widely in their daily functioning and psychological well-being. The relationship between health and psychological well-being is also complex. As Christiansen noted, we all know individuals with great health who are miserable, and conversely can think of patients who enjoy meaningful and happy lives despite living with physical limitations imposed by severe arthritis.

First, a few definitions. Quality of life can be thought of as both an individual's overall satisfaction with life, as well as a balance between positive and negative emotions. Positive emotions include feelings such as excitement, interest, and enthusiasm; positive affect is NOT merely the absence of negative moods such as loneliness, sadness, and fear. Individuals vary greatly in the importance they attach to different aspects of their lives. To truly appreciate a person's satisfaction with life, one must understand the activities the individual considers important to them, as well as the balance between positive and negative moods experienced. Chronic illness may impede access to critical life activities, and change the balance of positive and negative feelings.

Christiansen argued that concepts of life satisfaction and balance of affect has very important implications for both clinicians and researchers. Each of us seeks meaning in everyday activities. Our identity is reaffirmed through the things we do. Many individuals living with a chronic illness may find ways to adapt to the physical limitations imposed by their illness, such that they still retain access to the activities that give meaning and purpose to life. However, when physical limitations of illnesses deny individuals the opportunity to engage in their highly-valued activities, the loss may be so great as to result in profound depression and loss of the will to live.

Editorial Comments: Clearly, other psychological factors such as self-esteem, perceived control and personality also interact with the environment to influence the meaning and purpose we attach to our lives. However, Christiansen's message is an important one that researchers and clinicians would do well to heed. People create meaning through the pursuit of every day activities. Each of us has our own idiosyncratic "To do" list of activities that give meaning and purpose to our lives. The most devastating impact of chronic illness may not result from changes in body functions and structures, but rather as a result of the near insurmountable assault on identity as individuals are increasingly denied their ability to pursue personally essential activities that give meaning to life.

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Background: Few chronic diseases are as painful or debilitating as Rheumatoid Arthritis (RA). Individuals with RA face a relentless barrage of physical and emotional challenges. Nevertheless, there is wide variability in how persons with comparable levels of disease function.

One area of individual differences that has received little investigation is spirituality. Spiritual transcendence can be defined as the capacity to stand outside of the immediate sense of time and place and to view life from a larger, more detached perspective. The ability to spiritually transcend may influence how individuals orient and adapt to the of life events. In persons with chronic illness, spiritual transcendence may mediate coping, adjustment and well-being when living with a chronic health challenge. The goal of this study was to evaluate spirituality and functional level, coping and well-being among individuals with RA. Data from selected baseline measures are presented below.

Subjects: Participants were 62 females and 15 males followed at the Johns Hopkins Arthritis Center and JH allied rheumatology clinics. Eligibility criteria included: 1) met ACR criteria for Ra; 2) disease of > 2 years duration; 3) age > 30 years; 4) free of comorbid conditions or stable for these conditions.

Methods: Disease activity and severity were assessed by board certified JH Rheumatologists. Baseline psychosocial measures were obtained on functional level (SF-36), coping (Ways of Coping), well-being (Affect Balance), mood (CES-D), and spiritual transcendence (Spiritual Transcendence Scale).

Results: Women had a mean (+ SD) age of 53 + 13 years with 13 + 13 swollen and tender joints. Men had a mean age of 62 + 13 yrs with 4 + 6 swollen and tender joints. More than 80% of the sample was white and described their religious affiliation as Christian. Individuals had been diagnosed on average nine years earlier and 80% had not undergone joint replacement. 31% of women and 33% of men reported clinically significant levels of depressive symptoms. There were no differences by gender in spiritual transcendence.

Disease activity and severity correlated modestly with reports of pain, poorer self-assessment of health, limitations in usual role activities, and depressive symptoms (rs < .03). Disease activity was not associated with limitations in physical activities, energy/fatigue, social functioning, psychological health and well-being, role limitations due to emotional problems.

Spiritual transcendence was not associated with disease activity, but correlated modestly with general appraisals of health (r = .29). Spiritual transcendence was also associated with more adaptive coping methods such as the use of positive thinking, drawing strength from others, as well as less escapism and avoidance. In multiple regression analyses, spiritual transcendence was an independent predictor of health perceptions, even after controlling for age, disease activity, energy/fatigue, mood and physical function (model adjusted r²= .51, p = .000).

Editorial Comment: Though the relationship between spirituality and health has been well established, only a handful of studies have carefully evaluated the relationship between spirituality and illness. These findings suggest that individuals with stable RA who have a greater capacity for spiritual transcendence view their health more positively and cope more adaptively. Spiritual transcendence may reflect an ability to view ones live in a broader context (i.e., move beyond the here and now) and adapt more successfully to living with chronic illness. More research is needed to understand how spiritual transcendence may influence psychological well-being and living with a chronic illness.

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