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Group education for people with arthritis
pATiENT EdUCATiON ANd COUNSE[iN(j ELSEVIER
Patient
Education
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Group education for people with arthritis Julie H. Barlow*, Jane Barefoot School
of
Received
Health
& Social
20 February
Sciences,
Coventry
1995; revision
University,
received
Priory
26 October
Street.
Coventry,
1995; accepted
CVI
4 November
.5FB. lJK 1995
Abstract Arthritis is a common chronic disease causing pain and progressive disability to millions of people. The purpose of the study was to examine the effectiveness of group patient education for people with one form of arthritis, ankylosing spondylitis (AS), in terms of change in: arthritis self-efficacy; psychological well-being; physical well-being; and home exercise activities. The Self-Management Course-Ankylosing Spondylitis (SMC-AS) demonstrated positive effects on arthritis self-efficacy and psychological well-being at B-month follow-up. Analysis of change over time in the intervention group showed improvements in depression, self-efficacy and severity at 3 weeks, with trends towards continued improvement evident at 6 months. In contrast, the positive effects on range and frequency of home exercise activities at 3 weeks were not maintained at 6 months. In conclusion, the effectiveness of short, intensive patient education courses was demonstrated. However, the need for strategies to sustain improvements in exercise behaviour need to be explored. Keywords:
Group patient education; Arthritis; Self-efficacy
1. Introduction Arthritis is a common chronic diseaseaffecting millions of people world-wide. Despite the pain and progressive disability experienced by people with this condition, arthritis is not considered to be a major public health problem. Nevertheless, arthritis is the single largest cause of physical disability in the UK with a population prevalence of 8.2% [l]. Moreover, arthritis cannot be completely cured, nor, in most cases, prevented. *Corresponding author, (+44-203) 838 784.
Tel.:
(+44-203)
0738-3991/96/$15.00 @ 1996 Elsevier SSDI 0738-3991(95)00844-P
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838
734;
Ireland
Fax:
Ltd.
All
Treatment is ameliorative and designed to slow down progressive disability, reduce pain and maintain functioning. Due to the proportional increase of the ageing population, the number of patients with rheumatic diseases is growing rapidly [2]. Provision of monitoring and longterm treatment for people with arthritis poses a challenge for the future and has significant implications for health care resources. Ankylosing spondylitis (AS) is one of the more common forms of arthritis. It is characterised by an early age at onset (under 40) and is one of the few rheumatic diseases to exhibit a male predominance, with reported sex ratios in rights
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the region of three men to one woman [3]. The aetiology of AS remains unknown, although an association with the antigen HLA-B27 was identified over 20 years ago [4]. The disease affects mainly the spine and sacroiliac joints, although other parts of the body (e.g. hips, shoulders, knees and eyes) can become involved. Gradual fusion of affected joints in the spine results in progressive functional impairment and the development of a typical hunched posture. Since AS cannot be cured, long-term disease management is necessary. Treatment is twofold, consisting of medication and therapeutic exercise. The aim of medication, usually non-steroidal anti-inflammatory drugs (NSAIDS), is to reduce pain and inflammation. The other mainstay of treatment is performance of regular strengthening and stretching exercises designed to maintain mobility of affected joints, to improve or maintain posture and to achieve general fitness. The short-term effectiveness of a regular exercise programme has been demonstrated for hospital in-patients [5,6]. One of the few studies of exercise therapy amongst AS out-patients found positive effects of group exercise therapy on thoracolumbar mobility, general fitness and self-reported estimates of global health [7]. Similar improvements on self-reports of well-being after group exercise have been noted at an anecdotal level [8]. Psychosocial factors have rarely been examined amongst this patient population, although there are increasing indications [7,9,10] that the benefits of group education for people with AS may centre on psychological rather than physical factors. Since exercise and self-monitoring activities have to be maintained for the remainder of a person’s life, education and promotion of selfmanagement are salient issues for those with AS. Given the relatively early age of onset, exercising regularly for the remainder of one’s life is a daunting prospect for even the most motivated of individuals. For example, a young man diagnosed with AS at the age of 20 years, can expect to carry out over 18 000 exercise sessions by the time he is 70 years old. Regular exercise and monitoring of posture has to become an integral part of everyday life. Moreover, home exercise
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activities have to be sustained under conditions of limited contact with health care professionals. After diagnosis of AS, usually by a rheumatologist, some patients continue to be monitored in hospital-based clinics, whilst others may be referred back to community-based medical practitioners for long term health care. People with AS can be referred to a physiotherapy department for advice on home exercise activities and may also receive a short course of hydrotherapy, although such treatment is dependent upon the availability of local facilities. Regular contact with physiotherapists is usually limited to short blocks of treatment, often following the initial diagnosis or during periods of disease exacerbation, for example. It is clear that responsibility for coping and managing arthritis on a long-term, daily basis lies firmly with the patient. Adherence to long-term treatment regimes, particularly those involving a behavioural component (e.g. exercise), is consistently lower than adherence to medication [ll]. The attrition rate from exercise programmes approximates 50% within the first six months, declining even further over time [12]. In general, the factors most consistently related to adherence tend to be of a psychosocial nature rather than demographic or disease-related [11,13]. For example, the most frequently cited reasons for attrition from exercise programmes amongst middle-aged, sedentary adults are lack of motivation and time management [14]. Most studies of exercise behaviour have been based on samples from the general population. Few studies have focused on people with chronic disease for whom exercise is an important aspect of long-term disease management. Furthermore, people with arthritis are expected to exercise regularly despite pain and discomfort. The concept of self-efficacy, first introduced by Bandura in 1977 [15], has been shown to influence a variety of health behaviours, including exercise [16,17]. Self-efficacy is related to several other constructs known to be important for health and well-being: locus of control; perceived control; helplessness; and coping [34]. Level of specificity differentiates self-efficacy from these related constructs. In the context of arthritis,
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self-efficacy refers to perceived ability to manage pain, fatigue and physical functioning on a daily basis. Given equal disease severity, perception of arthritis self-efficacy (confidence in self-management) can differentiate between those who are incapacitated by their disease and those who continue to live full and active lives. Arthritis self-efficacy has been shown to play a mediating role in the relationship between disease severity and adaptation protecting the individual from the adverse effects of disease severity [18,19]. Patient education may be one means of promoting arthritis self-efficacy amongst people with AS, thus enhancing psychological well-being and performance of health behaviour (e.g. exercise),
2. Methods 2.1. Self-management courses for people with ankylosing spondylitis (SMC-AS)
The SMC-AS is designed to complement traditional health care services by promoting understanding of the disease, self-management skills and home exercise activities. The aim of the Course is to enhance the quality of life for people with a painful and disabling chronic disease, who require long-term care and treatment in the community. The Course consists of 12 h of intensive tuition spread over two, consecutive days. The course includes sessions on: information about AS; exercises in a hydrotherapy pool and on land; posture in everyday activities; home checks for monitoring mobility; and exercise motivation sessions. The last of these involved identification of barriers to exercise and problem solving techniques to overcome
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barriers. The importance of strengthening and stretching exercises is emphasised throughout. 2.2. Procedures
The SMC-AS was evaluated in a quasi-experimental design based on comparisons between an intervention group and a matched control group. Baseline assessments of both groups were carried out one week prior to the start of the intervention. The intervention group were further assessed at 3 weeks and at 6 months after attending the Course. The control group were assessed after 6 months. Data were collected by self-administered questionnaires mailed to participants. All study participants had previously received a Patient Guidebook from the National Ankylosing Spondylitis Society with information on AS and details of a home exercise programme. (See Table 1 for representation of research design.) Data were analysed using the Statistical Package for the Social Sciences [35]. The primary outcome measure was that of arthritis self-efficacy. This is defined as the individual’s confidence in their perceived ability to control, or manage, various aspects of arthritis (e.g. pain). The designation of arthritis self-efficacy as the primary outcome measure reflects the fundamental purpose of the SMC-AS: to improve self-management at home. Secondary outcome measures were physical and psychological well-being and performance of home exercise activities. The following hypotheses were tested: 1. Participation in the SMC-AS increases perception of self-efficacy (self-management) over arthritis. 2. Participation in the SMC-AS improves health status.
Table 1 Representation of research design Group
Baseline
Intervention
3 weeks
6 months
Intervention (N = 24) Control (N = 28)
Pretest
SMC-AS
Post-test
Post-test
Pretest
Post-test
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3. Participation in the SMC-AS increases performance of home exercise activity. 2.4. Sample
All 30 participants attending the first two SMCAS were invited to take part in the study. Three participants in the intervention group were lost to follow-up giving a final response rate of 80%. Entry into the study was limited to those with a diagnosis of AS by a named medical practitioner. In addition, the intervention group were required to return an approval form signed by a medical practitioner prior to attending the SMC-AS. The control group was recruited from of pool of potential SMC-AS participants and were matched on sex, age, duration and diagnostic delay. Response rate for the control group was 78%. 2.5. Measuring
instruments
Demographic and disease-related data (e.g. age, sex, duration of disease) were collected at baseline only. All other measures were included in baseline and follow-up assessments. There is no recognised ‘gold standard’ for measuring disease severity in AS [20]. Objective measures of disease activity used in studies of other forms of arthritis are not always relevant in the assessment of AS. Hence, in the present study, disease severity was assessed by a six-item, self-report scale developed for use with this patient population [18]. Items include: ‘How much pain are you experiencing from AS at the moment’, and are scored on a seven point scale anchored by terms such as ‘no pain at all’ and ‘unbearable pain’. Internal reliability is high (e.g. Cronbach’s alpha 0.90) although 3-week testretest coefficients tend to be lower (e.g. 0.73) reflecting the changeable nature of symptom severity in AS. Physical functioning was assessed using the Functional Index [22] designed for use in AS. Twenty items cover a range of daily activities such as getting up out of a chair, turning over in bed or climbing one flight of stairs. Each item is scored for degree of difficulty using a three-point
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scale. Lower scores indicate greater functional impairment. Psychological well-being was measured by the Center for Epidemiological Studies-Depression (CES-D) Scale, [23]. The CES-D is a 20-item self-report scale which has been shown to be a valid measure of depressive symptomatology amongst people with arthritis [24]. The CES-D has been used in previous questionnaire surveys of people with arthritis in the UK [25-271. The scale range is O-60, with a cut off point of 16 and over denoting those at risk of clinical depression. Arthritis self-efficacy refers to perceived confidence in managing pain and other symptoms, such as fatigue. Self-efficacy: AS was assessed by a scale adapted from the Self-efficacy Pain and Self-efficacy Other Symptoms Scales developed by Lorig et al. [31]. The term ‘arthritis’ was replaced by ‘ankylosing spondylitis’ or ‘AS’ throughout. Additional items relating to control of stiffness used in previous studies of AS [18] were included. The reliability and factor structure of the adapted scale was examined in a sample of 55 people with AS, recruited specifically for this purpose. A two factor structure was revealed, labelled ‘Self-efficacy: General’ and ‘Self-efficacy: Symptoms’. The Self-efficacy: Symptoms sub scale consisted of six items relating to control of pain, stiffness and fatigue. The Self-efficacy: General sub scale consisted of seven items relating to general management ability (e.g. How confident are you that you can manage your activities so as not to aggravate your AS?). Each item was rated on a seven-point scale anchored by ‘not at all confident’ to ‘very confident’. Test-retest scores (3 weeks) and internal consistency (Cronbach’s alpha) in the validation sample were 0.74 and 0.85 for Self-efficacy: General and 0.73 and 0.86 for Self-efficacy: Symptoms. Exercise was assessed along two dimensions: range of home exercise activities; and frequency of exercise sessions per week. Items for the Range of Exercise Activities measure were drawn from the Ankylosing Spondylitis Patient Guidebook. Diagrams illustrating eight exercises were reproduced on the questionnaire. Respondents are asked to indicate in the boxes provided
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whether they include a particular exercise in a typical home exercise session. Three additional monitoring activities are suggested in the Guidebook (e.g. deep breathing) and are included in the Exercise Range scale. Items are scored 0 or 1 giving a range of O-11. Internal consistency (Cronbach’s alpha) for this study was 0.87. Exercise frequency was assessed by one item asking respondents how many exercise sessions they have carried out at home during the past week. These measures have been used in other studies of exercise behaviour in AS [18].
3.1. Comparisons
The intervention and the control group were compared on all study variables at baseline using Student’s r-tests or Mann-Whitney U-tests where appropriate. No significant differences were found at baseline, prior to the SMC-AS. The intervention group (N = 24, 14 men; 10 women) had a mean age of 42.00; mean disease duration of 16.89 years, and a mean age at onset of 25.13 years. The control group (N= 28, 16 men; 12 women) had a mean age of 42.64, mean disease duration of 17.93 years and a mean age at onset of 24.71 years. The median scores on depression for both the intervention and control groups were 13.00 and 11.50, respectively, just below the cut off point (greater than or equal to 16) indicating risk of clinical depression. Table 2 shows means and standard deviations at baseline, 2 scores at baseline,
Variable
are means
with
Group
(N = 24)
Baseline
3 week change
17.79 47.83 29.04 25.71 13.75
(7.01) (5.40) (8.64) (8.64) (8.13)
-1.43 3.91 5.22 2.91 -3.48
deviation
in parentheses.
standard
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and 6 months
Intervention
Severity Functional Index Self-efficacy: General Self-Efficacy: Symptoms Depression Values
3 weeks
Counseling
3-week change scores for the intervention group, and 6 month change scores for the intervention and control groups. Depression showed evidence of a positive skew. A square root transformation was performed prior to analysis which produced greater symmetry of distribution. The median values for exercise frequency amongst the Intervention Group at baseline, 3 weeks and 6 months were 2.50,6.00 and 1.50 with ranges of 1.00-6.00, 3.00-7.00 and 1.00-5.00, respectively. Median values for exercise frequency amongst the Control Group at baseline and 6 months were 3.00 and 2.00, with ranges of 0.25-6.50 and o-5.00, respectively. Median values for exercise range amongst the Intervention Group at baseline, 3 weeks and 6 months were 4.50, 9.00 and 7.00, with ranges of 1.00-8.75, 5.00-10.00, and 1.25-10.00, respectively. Median values for exercise range amongst the Control Group at baseline and 6 months remained stable at 5.50 for both points in time. Similarly, scores on this variable ranged from 2.00 to 8.00 at both points in time. Associations between study variables at baseline were examined using Pearson or Spearman correlation coefficients as appropriate. As expected, greater disease severity was associated with: greater functional impairment (r = -0.58, P < 0.0001); lower self-efficacy (r = -0.44, P < 0.0001 and r = -0.43, P < 0.001 for Self-efficacy: General and Self-efficacy: Symptoms, respectively); and higher levels of depression (r = 0.47, P < 0.0001). In addition, severity was positively associated with exercise range and frequency (r =0.35, P
3. Results
Table Mean
and
Control 6 month change
(4.74) (3.44) (8.08) (9.05) (11.19)
-2.92 3.54 7.29 6.00 -3.67 NA.
(5.10) (6.06) (9.11) (7.82) (9.63)
Group
Baseline
3 week change
6 month change
18.39 48.21 29.71( 27.04 12.68
NA NA NA NA NA
-1.25 4.07 0.39 0.43 1.82
not applicable.
(7.1 I) (5.92) 10.93) (8.08) (9.07)
P-value of analysis of covariance
(N = 28)
(4.40) (7.15) (5.99) (4.92) (5.81)
0.165 0.769 O.OiJl 0.002 0.02
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spectively): people with more severe disease carried out a greater range of home exercise activities more times per week. A long delay of several years between onset of symptoms and diagnosis is characteristic of this type of arthritis (AS). Longer diagnostic delay was found to be associated with greater severity (r = 0.45, P < O.OOl), more severe functional impairment (r = 0.31, P <0.05) and performance of a greater range (r = 0.28, P co.05 ) and frequency of home exercise activities (r = 0.27, P < 0.05). 3.2. Effects of group educatidit
Both intervention and control groups were assessed at baseline and 6 months post-intervention. The intervention and control group were compared using analysis of covariance with mean scores on depression, severity, functional index and self-efficacy at final assessment as the dependent variables and baseline scores of each dependent variable as the covariate. The SMC-AS was found to have positive effects on depression (Fl, 50 = 5.74, P = 0.02) Self-efficacy: General (Fl, 50 = 12.38, P = 0.001) and Self-efficacy: Symptoms (Fl, 50 = 11.02, P = 0.002). There were no significant effects of the SMC-AS on disease severity or physical functioning, although a trend towards improvement on severity amongst the intervention group was noted. Effect sizes were calculated using the following formula: Effect size = X, - X, / S.D., where X, = mean score of the intervention group, X, = mean score of the control group, and S.D., = standard deviation of the control group (all values are post-intervention) [36]. The effect sizes for depression, Self-efficacy: General and Self-efficacy Symptoms were 0.59, 0.49 and 0.41, respectively. These values are in accordance with a medium effect size (i.e. 0.50) as denoted by Cohen 1371. Change scores between baseline and final assessment on exercise range and exercise frequency were calculated for both the intervention and control group and were compared using Mann Whitney U-tests. No significant differences
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were found, although a trend towards an increase in range of home exercise activities amongst the intervention group could be identified. Support was obtained for hypotheses 1: attending the SMC-AS significantly increased arthritis self-efficacy. Hypothesis 2 was partially supported: although no significant differences were found between intervention and control group on physical health status, a trend towards improvement on disease severity could be identified and the SMC-AS had a statistically significant positive effect on psychological well-being. Both intervention and control group reported a positive change on physical functioning. The significant, short-term improvements on exercise range and frequency and the trend towards a longer term increase in range of exercise activities provide qualified support for hypothesis 3. 3.3. Pattern of change in the intervention
group
The pattern of change in the intervention group was examined at three points in time (baseline, 3 weeks and 6 months) using repeated measures analysis of variance on the dependent variables of Severity, Functional Index, Self-efficacy and Depression. Time had a significant effect on Severity (Wilks’ Lambda P = 0.005) Functional Index (Wilks’ Lambda P < O.OOOl), Self-efficacy: General (Wilks’ Lambda P = 0.003) and Selfefficacy: Symptoms (Wilks’ Lambda P = 0.004). From baseline to 3 weeks the intervention group improved in terms of Severity, Self-efficacy: Symptoms and Self-efficacy: General (P = 0.001 in each case). The improvement on Functional Index at 3 weeks was significant at P < 0.0001. The effect of time on depression was not statistically significant overall (Wilks’ Lambda P = 0.16). However, the change between baseline and 3 weeks was significant at the 5% level. The greatest improvement on all dependent variables occurred during the 3 weeks following the course and was maintained over time. Trends towards continued improvement were observed but did not reach statistical significance (mean change scores are presented in Table 2). Regarding home exercise activity, changes between baseline and 3 weeks post-intervention
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were analysed using Wilcoxon Matched-Pairs Signed-Ranks Test. The intervention group reported an increase in the range of home exercise activities carried out (P = 0.0004) and an increased frequency of home exercise sessions (P = 0.0023). Change between 3 weeks and 6 months post-intervention assessments were analysed using Wilcoxon Matched-Pairs Signed-Ranks Test for the exercise variables. Both exercise range and exercise frequency had significantly decreased at 6 months (P = 0.04 and P = 0.007, respectively). Fig. 1 illustrates the pattern of change over time on frequency and range of home exercise activities. The importance of social support was evident in response to open-ended questions regarding
Pattern Exercise
Graph 1: of Change in Frequency of Home Activities for the Intervention Group
1
04
6 months
Baseline
Pattern
Graph 2: of Change in Range of Home Exercise Activities for the Intervention Group
6 months
Baseline
Fig. 1.
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perceived outcomes of the SMC-AS. People reported that they valued ‘the opportunity to meet others with the same condition’, which enabled them to discuss common experiences and exchange coping strategies. During the 2-day course, they came to realise that they were ‘not alone’. One young, male participant had started an exercise group in his locality 6 months after attending the SMC-AS.
4. Discussion
4.1. Findings The positive association between severity and exercise at baseline suggests that people with greater perceived severity are more likely to adhere to therapeutic exercise. Hence, as group participants began to ‘feel better’ in terms of pain, stiffness and psychological well-being, motivation to carry out therapeutic exercise may have declined. This intriguing finding warrants further, more detailed exploration and has implications for clinical practice. The additional factor found to influence home exercise activity was that of diagnostic delay. The findings of the present study are in accordance with previous research amongst this patient population [18], showing that the longer people wait for a medical diagnosis, the more likely they are to adhere to a programme of therapeutic exercise. Hence, the essentially negative experience of waiting several years for a confirmed diagnosis has an unexpected positive outcome in terms of carrying out the therapeutic recommendations of health professionals. Both the intervention and control groups demonstrated improvements in physical functioning. Reasons for this improvement amongst the control group remain unclear. Measurement of functional ability in AS is in the early stages of development. Functional scales validated amongst samples of people with rheumatoid arthritis or osteoarthritis may not capture problems of the axial skeleton found in AS. The Functional Index used in this study was designed specifically for AS. Nevertheless, the restricted
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range of responses obtained suggests the measure may not provide an accurate reflection of functional variation. There is evidence that people with AS tend to underestimate their functional difficulties [29] and use unusual movements or gadgets to assist in problem areas [30]. The latter has been taken into account in a new functional scale [30] which may provide a more reliable and sensitive measure for use within this population. The short, intensive self-management course for people with AS (SMC-AS) was effective in promoting positive change on expectations and psychological well-being but was less successful in promoting long-term change in exercise behaviour. As reported in studies of exercise behaviour amongst the general population [12], rates of adherence showed an initial increase after the course and then tends to decline over time. Failure to maintain change over time through patient education has been reported in a hospital based study of people with rheumatoid arthritis in The Netherlands [31]. With the exception of pain self-efficacy, few long-term effects were evident 14 months after delivery of an adapted version of the Arthritis Self-Management Programme [32]. In contrast, Lorig and Holman (1993) report long-term improvements on pain, depression and arthritis self-efficacy at 20 months and 4 years after attending the Arthritis Self-Management Programme (ASMP) in the USA [33]. It should be noted that the ASMP is designed for people with all types of mild to moderate arthritis and consists of 12 h tuition spread over a period of 6 weeks. The majority of participants in the studies reviewed by Lorig and Holman were women with osteoarthritis with a mean age of 6.5 years. In contrast, the focus of the present study was on a short, intensive course (12 h in 2 days) designed for people with a type of arthritis, AS, which is more prevalent in men and has an early age of onset. The majority of participants were male with a mean age of 42 years. Thus it is not clear whether the sustained benefits reported by Lorig et al. derive from the characteristics of ASMP participants, such as type of arthritis, age, gender, cultural differences between North Americans and Europeans, or
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variation in the format of each educational programme. Regarding the nature of outcomes of patient education, there is increasing evidence that educational programmes do not have great impact on physical functioning amongst people with arthritis. Rather, the main benefits appear to centre on psychological well-being (e.g. depression) and confidence in self-management of the condition (i.e. self-efficacy). For example, Basler (1993) showed that for people with AS recruited through the German self-help organisation, the main effects of attending a cognitive-behavioural programme were on well-being (e.g. depression) and self-efficacy [9]. Little change was found on indicators of disease severity, such as pain. Similarly, evaluations of the ASMP report positive effects on depression and self-efficacy [33]. These findings were replicated in the present study which showed that a short, intensive patient education programme for people with AS had significant, positive effects on depression and self-efficacy expectations; factors of patient wellbeing which have rarely been considered in previous evaluations of educational programmes for this patient population.
4.2. Limitations
Limitations of the present study are the lack of a randomised control group and the relatively small numbers of participants. The mode of recruitment to the courses did not allow for randomisation, hence a matched control group was used. The interactive nature of the course limits the number of participants on each course to a maximum of 15. Thus findings from several course evaluations need to be combined in order to attain a large sample size. The present study is the first evaluation of this form of patient education for AS, and as such has to be considered exploratory. Further evaluations could be improved by extending the range of outcomes assessed to include dimensions such as illness acceptance, social support, monitoring of mobility and performance of general exercise activities (e.g. swimming). Analysis of change
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over time to determine whether improvements are maintained in the long term, is an important aspect of evaluating intervention programmes. Maintenance of change is particularly salient in the context of chronic conditions which involve long-term disease management. A time series approach providing multiple data points covering longer periods (e.g. over 2 years) is needed to understand more fully the pattern and process of change following group patient education. The intervention format may be considered a limitation. There was no opportunity for contact between course participants and course tutors after the end of the course. Thus feedback, encouragement and advice on performance of exercise activities was only available from course tutors during the two day intervention. Future courses will be open to partners who can learn when and how to provide feedback, support and encouragement to people with AS. This strategy may help to facilitate development of self-management, self-efficacy and behavioural change amongst participants.
4.3. Implications The success of the SMC-AS in promoting shortterm gains in exercise adherence and long-term enhancement of psychological well-being and self-efficacy indicates that such courses are worthy of further exploration. The inclusion of psychosocial variables in the evaluation has enhanced understanding of the effects of group education where a key component is promotion of behavioural change. The improvements in well-being, evident 6 months after the intervention, were not matched by sustained improvement on therapeutic exercise. In conditions such as arthritis, it is important that exercise treatment is maintained even when perceived disease severity improves. The results suggest that booster sessions may be necessary to enhance maintenance of the short-term improvements in exercise behaviours. Evidence deriving from course feedback suggests that attending such intensive courses once or twice a year may be the preferred mode of treatment for some members of
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this patient population. Drawbacks of short, intensive patient education programmes are the lack of continued contact after the programme and the wealth of information which participants have to absorb, remember and act on in the home environment. Strategies to overcome these drawbacks are mutual support through a telephone ‘buddy’ system and provision of detailed information packs describing home exercise activities. Sessions dedicated to assisting participants with individual goal setting and the design of a personal home exercise activity plan may also help to sustain motivation in the home environment. Inviting partners to attend the course may be one method to ensure that the individual has a source of informed feedback and support in relation to home exercise activities. Provision of short educational programmes run outside of formal health care may be one means of offering people with AS the opportunity to master selfmanagement techniques in a safe environment. The practice implications are summarised in Table 3 and are based on the key features of course content, the course evaluation methodology employed and the suggested improvements deriving from the findings of the study reported here.
4.4. Conclusions Although there was a lack of sustained improvement in exercise behaviour following the group education programme, the positive effects on well-being and self-efficacy should not be under estimated. Self-efficacy is an important factor influencing both physical and psychological health status across a variety of patient and non-patient populations [16,33] and has been shown to play a mediating role in the relationship between disease severity and psychological well-being [l&19]. Promotion of arthritis selfefficacy through group patient education could be utilised as a relatively low cost means of enhancing quality of life amongst people who are not only vulnerable to psychological distress but also need assistance in the long-term management of their condition.
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Table 3 Practice implications Course
(i) (ii) (iii) (iv) (v) (vi) (vii) (viii) (xi)
content
to include
Mastery experiences - opportunity to try out exercises in safe environment Role modelling - observing similar others carrying out exercises Discussion and development of mutual support Verbal and written information Goal setting Development of a personal home exercise activities plan Feedback and reinforcement during the course Suggestions for mobilising support in the home environment e.g. from family, telephone Booster sessions to remind and sustain motivation
Evaluation
to include
(i) Change in physical, psychological and social health status (ii) Change in behaviours (iii) Longitudinal assessment at multiple time points
Acknowledgements
This research was supported by a grant to the first author from the Nuffield Foundation. The authors would like to thank Chris Wright for advice on statistical analysis, and Julius Sim and two anonymous reviewers for comments on an earlier version of this manuscript.
References [l] Badley EM, Tenant A. Disablement associated with rheumatic disorders in a British population: problems with activities of daily living and level of support. Br .I Rheumatol 1993; 32: 601-608. [2] Fielts W, Yelin E. The economic impact of the rheumatic diseases. Arthritis Rheum 1989; 33: 750-755. [3] Kahn AM, van der Linden S. Ankylosing spondylitis and other spondylarthropathies. Rheum Dis Clin N Am 1990; 16: 551-579. [4] Brewerton D, Caffrey M. Hart D. Ankylosing spondylitis and HLA-B27. Lancet 1973; 1: 902. [5] Bulstrode SJ, Barefoot J, Harrison RA, Clarke AK. The role of passive stretching in the treatment of ankylosing spondylitis. Br J Rheumatol 1987; 26: 40-42. [6] Tomlinson M, Barefoot J, Dixon A. Intensive in-patient physiotherapy courses improve movement and posture in ankylosing spondylitis. Physiotherapy 1986; 75: 238240. [7] Hidding A, van der Linden S, Boers M, Gielen X, de Witte L, Kester A, Dijkmans B, Moolenburgh D. Is group physical therapy superior to individualised therapy in ankylosing spondylitis patients. Arthritis Care, Res 1993; 6: 117-125.
[8] Allington L, Cunnington SJ, Matthews M. Speedley J. Trussell EC, Ward E, McKenzie JMM, Swannell AJ. The effect of regular physiotherapy on mobility and the shape of the spine in patients with ankylosing spondylitis. Br J Rheumatol 1987; 1: 70. [9] Basler H-D. Group treatment for pain and discomfort. In: Special Issue: Psychosocial Aspects of Rheumatic Diseases. Pat Educ Couns 1993; 20: 167-175 [lo] Barlow JH. Social Support: The ‘hidden’ benefit of group exercise for ankylosing spondylitis. British Health Professionals in Rheumatology: Rheumatology in The Nineties, University of Bristol, 2-3, April, 1992. [ll] Deyo RA. Compliance with therapeutic regimes in arthritis: Issues, Current Status and a Future Agenda. Semin Arthritis Rheum 1982: 12: 233-244. [12] Dishman RK. Compliance/adherence in health-related education. Health Psycho1 1982; 1: 237-267. [13] DiNicola DD, DiMatteo MR. Practitioners and compliance with medical regimens: a social psychological perspective. In: Baum A. Taylor S, Singer JE editors. Handbook of psychology and health, Vol. 4. London: Lawrence Erlbaum Associates, 1984. [14] McAuley E. The role of efficacy cognitions in the prediction of exercise behaviour in middle-aged adults. J Behav Med 1992; 15: 65-68. [15] Bandura A. Social learning theory. Englewood Cliffs, NJ: Prentice-Hall, 1977. [16] Bandura A. Exercise of personal agency through the self-efficacy mechanism. In: Schwarzer R editors. Selfefficacy: thought control of action. USA: Hemisphere Publishing Corp., 1992: 3-38. [17] Sallis JF, Hovell. MF, Hofstetter CR, Barrington E. Explanation of vigorous physical activity during two years using social learning theory variables. Sot Sci Med 1992; 34: 25-32. [18] Barlow JH. Perceived control, self-efficacy and outcome expectations in the context of a chronic disease. Ph.D. Thesis. Coventry University, 1993
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[ IY] Barlow JH, Maccy SJ, Struthers CR. Control-related cognitions, chronic d&case and gender. In: Schroeder H. Rcschkc K, Johnston M, Maes S editors. Health Psychology: potential in diversity. Rcgensburg: Roderer Vcrlag, 1YY3: 272--27X 1201 van dcr Linden S, Fcrraz MB, Tugwell P. Clinical and functional asscssmcnt of ankylosing spondylitis. SPINE: State Art Rev IYYO; 4: 583-593. 1221 Dougados M, Guegucn A, Nakache J-P, Nguyen M, Mcry C, Amor B. Evaluation of a functional index and an articular index in ankylosing spondylitis. J Rhcumatol I YXY; IS: 3022307. 1231 Radloff LS. The CES-D Scale: A self-report depression scale for research with the general population. Appl Psycho1 Meas 1977; I: 3X.5-401. [24] Blalock S, DeVcllis RF, Brown GK, Wallston KA. Validity of the ccntcr for epidemiological studies depression scale in arthritis populations, Arthritis Rheum 1989: 32: YYI -YY7. ]2S] Barlow JH, Macey SJ, Struthers CR. Gender, depression and ankylosing spondylitis. Arthritis Care, Res lYY3: 6: 45-51 1261 Barlow JH, Maccy SJ, Struthers GR. Health locus of control, self-help and treatment adherence in relation to ankylosing spondylitis patients. In: Special Issue: Psychosocial Aspects Of Rheumatic Diseases. Pat Educ Couns lYY3; 20: 153-166. ]27] Barlow JH. Macey SJ, Struthers GR. Psychosocial factors and self-help in ankylosing spondylitis patients. Clin Rhcumatol 1992; 11: 220-225. [2X] Lorig K. Chastain R. Ung E, Shoor S. Holman HR.
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[30]
[3l]
[32]
[33] [34]
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Development and evaluation of a scale to measure perceived self-efficacy in people with arthritis. Arthritis Rheum 1989; 32: 37-44. Hidding A, van der Linden S, Boers M, Gielen X, Kester A, Vlaeyen J. Fake good test-taking attitude in ankylosing spondylitis. Arthritis Rheum 1992; 35: S244. Abbott CA, Helliwell RS, Chamberlain MA. Functional assessment in ankylosing spondylitis: evaluation of a new self-administered questionnaire and correlates with anthropomorphic variables. Br J Rheumatol 1994; 33: 1060-l 066. Taal E, Seydel ER, Rasker JJ, Weigman 0. Group education for patients with rheumatoid arthritis. In: Special Issue: Psychosocial Aspects Of Rheumatic Discases. Pat Educ Couns 1991; 20: 177-187. Lorig K, Gonzalez V. The integration of theory with practice: a I2 year case study. Health Educ Q 1992; 19: 355-368. Lorig K, Holman H. Arthritis self-management studies: A twelve year review. Health Educ Q 1993; 20: 17-28. Strecher VJ, DeVellis BM, Becker MH, Rosenstock IM. The role of self-efficacy in achieving health behaviour change. Health Educ Q 1986; 13: 73-92. Statistics Package for Social Scientists (SPSS) for Windows: Version 6.0: SPSS Inc. Chicago. 1993. Howell D. Fundamental statistics for the behavioural social scientists. Boston, PWS-Kent Publishing Company. 19X9. Cohen J. Statistical Power Analysis for Behavioural Sciences (Rev. Ed.). New York. Academic Press. 1977.
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Group education for people with arthritis Julie H. Barlow*, Jane Barefoot School
of
Received
Health
& Social
20 February
Sciences,
Coventry
1995; revision
University,
received
Priory
26 October
Street.
Coventry,
1995; accepted
CVI
4 November
.5FB. lJK 1995
Abstract Arthritis is a common chronic disease causing pain and progressive disability to millions of people. The purpose of the study was to examine the effectiveness of group patient education for people with one form of arthritis, ankylosing spondylitis (AS), in terms of change in: arthritis self-efficacy; psychological well-being; physical well-being; and home exercise activities. The Self-Management Course-Ankylosing Spondylitis (SMC-AS) demonstrated positive effects on arthritis self-efficacy and psychological well-being at B-month follow-up. Analysis of change over time in the intervention group showed improvements in depression, self-efficacy and severity at 3 weeks, with trends towards continued improvement evident at 6 months. In contrast, the positive effects on range and frequency of home exercise activities at 3 weeks were not maintained at 6 months. In conclusion, the effectiveness of short, intensive patient education courses was demonstrated. However, the need for strategies to sustain improvements in exercise behaviour need to be explored. Keywords:
Group patient education; Arthritis; Self-efficacy
1. Introduction Arthritis is a common chronic diseaseaffecting millions of people world-wide. Despite the pain and progressive disability experienced by people with this condition, arthritis is not considered to be a major public health problem. Nevertheless, arthritis is the single largest cause of physical disability in the UK with a population prevalence of 8.2% [l]. Moreover, arthritis cannot be completely cured, nor, in most cases, prevented. *Corresponding author, (+44-203) 838 784.
Tel.:
(+44-203)
0738-3991/96/$15.00 @ 1996 Elsevier SSDI 0738-3991(95)00844-P
Science
838
734;
Ireland
Fax:
Ltd.
All
Treatment is ameliorative and designed to slow down progressive disability, reduce pain and maintain functioning. Due to the proportional increase of the ageing population, the number of patients with rheumatic diseases is growing rapidly [2]. Provision of monitoring and longterm treatment for people with arthritis poses a challenge for the future and has significant implications for health care resources. Ankylosing spondylitis (AS) is one of the more common forms of arthritis. It is characterised by an early age at onset (under 40) and is one of the few rheumatic diseases to exhibit a male predominance, with reported sex ratios in rights
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the region of three men to one woman [3]. The aetiology of AS remains unknown, although an association with the antigen HLA-B27 was identified over 20 years ago [4]. The disease affects mainly the spine and sacroiliac joints, although other parts of the body (e.g. hips, shoulders, knees and eyes) can become involved. Gradual fusion of affected joints in the spine results in progressive functional impairment and the development of a typical hunched posture. Since AS cannot be cured, long-term disease management is necessary. Treatment is twofold, consisting of medication and therapeutic exercise. The aim of medication, usually non-steroidal anti-inflammatory drugs (NSAIDS), is to reduce pain and inflammation. The other mainstay of treatment is performance of regular strengthening and stretching exercises designed to maintain mobility of affected joints, to improve or maintain posture and to achieve general fitness. The short-term effectiveness of a regular exercise programme has been demonstrated for hospital in-patients [5,6]. One of the few studies of exercise therapy amongst AS out-patients found positive effects of group exercise therapy on thoracolumbar mobility, general fitness and self-reported estimates of global health [7]. Similar improvements on self-reports of well-being after group exercise have been noted at an anecdotal level [8]. Psychosocial factors have rarely been examined amongst this patient population, although there are increasing indications [7,9,10] that the benefits of group education for people with AS may centre on psychological rather than physical factors. Since exercise and self-monitoring activities have to be maintained for the remainder of a person’s life, education and promotion of selfmanagement are salient issues for those with AS. Given the relatively early age of onset, exercising regularly for the remainder of one’s life is a daunting prospect for even the most motivated of individuals. For example, a young man diagnosed with AS at the age of 20 years, can expect to carry out over 18 000 exercise sessions by the time he is 70 years old. Regular exercise and monitoring of posture has to become an integral part of everyday life. Moreover, home exercise
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activities have to be sustained under conditions of limited contact with health care professionals. After diagnosis of AS, usually by a rheumatologist, some patients continue to be monitored in hospital-based clinics, whilst others may be referred back to community-based medical practitioners for long term health care. People with AS can be referred to a physiotherapy department for advice on home exercise activities and may also receive a short course of hydrotherapy, although such treatment is dependent upon the availability of local facilities. Regular contact with physiotherapists is usually limited to short blocks of treatment, often following the initial diagnosis or during periods of disease exacerbation, for example. It is clear that responsibility for coping and managing arthritis on a long-term, daily basis lies firmly with the patient. Adherence to long-term treatment regimes, particularly those involving a behavioural component (e.g. exercise), is consistently lower than adherence to medication [ll]. The attrition rate from exercise programmes approximates 50% within the first six months, declining even further over time [12]. In general, the factors most consistently related to adherence tend to be of a psychosocial nature rather than demographic or disease-related [11,13]. For example, the most frequently cited reasons for attrition from exercise programmes amongst middle-aged, sedentary adults are lack of motivation and time management [14]. Most studies of exercise behaviour have been based on samples from the general population. Few studies have focused on people with chronic disease for whom exercise is an important aspect of long-term disease management. Furthermore, people with arthritis are expected to exercise regularly despite pain and discomfort. The concept of self-efficacy, first introduced by Bandura in 1977 [15], has been shown to influence a variety of health behaviours, including exercise [16,17]. Self-efficacy is related to several other constructs known to be important for health and well-being: locus of control; perceived control; helplessness; and coping [34]. Level of specificity differentiates self-efficacy from these related constructs. In the context of arthritis,
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self-efficacy refers to perceived ability to manage pain, fatigue and physical functioning on a daily basis. Given equal disease severity, perception of arthritis self-efficacy (confidence in self-management) can differentiate between those who are incapacitated by their disease and those who continue to live full and active lives. Arthritis self-efficacy has been shown to play a mediating role in the relationship between disease severity and adaptation protecting the individual from the adverse effects of disease severity [18,19]. Patient education may be one means of promoting arthritis self-efficacy amongst people with AS, thus enhancing psychological well-being and performance of health behaviour (e.g. exercise),
2. Methods 2.1. Self-management courses for people with ankylosing spondylitis (SMC-AS)
The SMC-AS is designed to complement traditional health care services by promoting understanding of the disease, self-management skills and home exercise activities. The aim of the Course is to enhance the quality of life for people with a painful and disabling chronic disease, who require long-term care and treatment in the community. The Course consists of 12 h of intensive tuition spread over two, consecutive days. The course includes sessions on: information about AS; exercises in a hydrotherapy pool and on land; posture in everyday activities; home checks for monitoring mobility; and exercise motivation sessions. The last of these involved identification of barriers to exercise and problem solving techniques to overcome
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barriers. The importance of strengthening and stretching exercises is emphasised throughout. 2.2. Procedures
The SMC-AS was evaluated in a quasi-experimental design based on comparisons between an intervention group and a matched control group. Baseline assessments of both groups were carried out one week prior to the start of the intervention. The intervention group were further assessed at 3 weeks and at 6 months after attending the Course. The control group were assessed after 6 months. Data were collected by self-administered questionnaires mailed to participants. All study participants had previously received a Patient Guidebook from the National Ankylosing Spondylitis Society with information on AS and details of a home exercise programme. (See Table 1 for representation of research design.) Data were analysed using the Statistical Package for the Social Sciences [35]. The primary outcome measure was that of arthritis self-efficacy. This is defined as the individual’s confidence in their perceived ability to control, or manage, various aspects of arthritis (e.g. pain). The designation of arthritis self-efficacy as the primary outcome measure reflects the fundamental purpose of the SMC-AS: to improve self-management at home. Secondary outcome measures were physical and psychological well-being and performance of home exercise activities. The following hypotheses were tested: 1. Participation in the SMC-AS increases perception of self-efficacy (self-management) over arthritis. 2. Participation in the SMC-AS improves health status.
Table 1 Representation of research design Group
Baseline
Intervention
3 weeks
6 months
Intervention (N = 24) Control (N = 28)
Pretest
SMC-AS
Post-test
Post-test
Pretest
Post-test
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3. Participation in the SMC-AS increases performance of home exercise activity. 2.4. Sample
All 30 participants attending the first two SMCAS were invited to take part in the study. Three participants in the intervention group were lost to follow-up giving a final response rate of 80%. Entry into the study was limited to those with a diagnosis of AS by a named medical practitioner. In addition, the intervention group were required to return an approval form signed by a medical practitioner prior to attending the SMC-AS. The control group was recruited from of pool of potential SMC-AS participants and were matched on sex, age, duration and diagnostic delay. Response rate for the control group was 78%. 2.5. Measuring
instruments
Demographic and disease-related data (e.g. age, sex, duration of disease) were collected at baseline only. All other measures were included in baseline and follow-up assessments. There is no recognised ‘gold standard’ for measuring disease severity in AS [20]. Objective measures of disease activity used in studies of other forms of arthritis are not always relevant in the assessment of AS. Hence, in the present study, disease severity was assessed by a six-item, self-report scale developed for use with this patient population [18]. Items include: ‘How much pain are you experiencing from AS at the moment’, and are scored on a seven point scale anchored by terms such as ‘no pain at all’ and ‘unbearable pain’. Internal reliability is high (e.g. Cronbach’s alpha 0.90) although 3-week testretest coefficients tend to be lower (e.g. 0.73) reflecting the changeable nature of symptom severity in AS. Physical functioning was assessed using the Functional Index [22] designed for use in AS. Twenty items cover a range of daily activities such as getting up out of a chair, turning over in bed or climbing one flight of stairs. Each item is scored for degree of difficulty using a three-point
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scale. Lower scores indicate greater functional impairment. Psychological well-being was measured by the Center for Epidemiological Studies-Depression (CES-D) Scale, [23]. The CES-D is a 20-item self-report scale which has been shown to be a valid measure of depressive symptomatology amongst people with arthritis [24]. The CES-D has been used in previous questionnaire surveys of people with arthritis in the UK [25-271. The scale range is O-60, with a cut off point of 16 and over denoting those at risk of clinical depression. Arthritis self-efficacy refers to perceived confidence in managing pain and other symptoms, such as fatigue. Self-efficacy: AS was assessed by a scale adapted from the Self-efficacy Pain and Self-efficacy Other Symptoms Scales developed by Lorig et al. [31]. The term ‘arthritis’ was replaced by ‘ankylosing spondylitis’ or ‘AS’ throughout. Additional items relating to control of stiffness used in previous studies of AS [18] were included. The reliability and factor structure of the adapted scale was examined in a sample of 55 people with AS, recruited specifically for this purpose. A two factor structure was revealed, labelled ‘Self-efficacy: General’ and ‘Self-efficacy: Symptoms’. The Self-efficacy: Symptoms sub scale consisted of six items relating to control of pain, stiffness and fatigue. The Self-efficacy: General sub scale consisted of seven items relating to general management ability (e.g. How confident are you that you can manage your activities so as not to aggravate your AS?). Each item was rated on a seven-point scale anchored by ‘not at all confident’ to ‘very confident’. Test-retest scores (3 weeks) and internal consistency (Cronbach’s alpha) in the validation sample were 0.74 and 0.85 for Self-efficacy: General and 0.73 and 0.86 for Self-efficacy: Symptoms. Exercise was assessed along two dimensions: range of home exercise activities; and frequency of exercise sessions per week. Items for the Range of Exercise Activities measure were drawn from the Ankylosing Spondylitis Patient Guidebook. Diagrams illustrating eight exercises were reproduced on the questionnaire. Respondents are asked to indicate in the boxes provided
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whether they include a particular exercise in a typical home exercise session. Three additional monitoring activities are suggested in the Guidebook (e.g. deep breathing) and are included in the Exercise Range scale. Items are scored 0 or 1 giving a range of O-11. Internal consistency (Cronbach’s alpha) for this study was 0.87. Exercise frequency was assessed by one item asking respondents how many exercise sessions they have carried out at home during the past week. These measures have been used in other studies of exercise behaviour in AS [18].
3.1. Comparisons
The intervention and the control group were compared on all study variables at baseline using Student’s r-tests or Mann-Whitney U-tests where appropriate. No significant differences were found at baseline, prior to the SMC-AS. The intervention group (N = 24, 14 men; 10 women) had a mean age of 42.00; mean disease duration of 16.89 years, and a mean age at onset of 25.13 years. The control group (N= 28, 16 men; 12 women) had a mean age of 42.64, mean disease duration of 17.93 years and a mean age at onset of 24.71 years. The median scores on depression for both the intervention and control groups were 13.00 and 11.50, respectively, just below the cut off point (greater than or equal to 16) indicating risk of clinical depression. Table 2 shows means and standard deviations at baseline, 2 scores at baseline,
Variable
are means
with
Group
(N = 24)
Baseline
3 week change
17.79 47.83 29.04 25.71 13.75
(7.01) (5.40) (8.64) (8.64) (8.13)
-1.43 3.91 5.22 2.91 -3.48
deviation
in parentheses.
standard
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and 6 months
Intervention
Severity Functional Index Self-efficacy: General Self-Efficacy: Symptoms Depression Values
3 weeks
Counseling
3-week change scores for the intervention group, and 6 month change scores for the intervention and control groups. Depression showed evidence of a positive skew. A square root transformation was performed prior to analysis which produced greater symmetry of distribution. The median values for exercise frequency amongst the Intervention Group at baseline, 3 weeks and 6 months were 2.50,6.00 and 1.50 with ranges of 1.00-6.00, 3.00-7.00 and 1.00-5.00, respectively. Median values for exercise frequency amongst the Control Group at baseline and 6 months were 3.00 and 2.00, with ranges of 0.25-6.50 and o-5.00, respectively. Median values for exercise range amongst the Intervention Group at baseline, 3 weeks and 6 months were 4.50, 9.00 and 7.00, with ranges of 1.00-8.75, 5.00-10.00, and 1.25-10.00, respectively. Median values for exercise range amongst the Control Group at baseline and 6 months remained stable at 5.50 for both points in time. Similarly, scores on this variable ranged from 2.00 to 8.00 at both points in time. Associations between study variables at baseline were examined using Pearson or Spearman correlation coefficients as appropriate. As expected, greater disease severity was associated with: greater functional impairment (r = -0.58, P < 0.0001); lower self-efficacy (r = -0.44, P < 0.0001 and r = -0.43, P < 0.001 for Self-efficacy: General and Self-efficacy: Symptoms, respectively); and higher levels of depression (r = 0.47, P < 0.0001). In addition, severity was positively associated with exercise range and frequency (r =0.35, P
3. Results
Table Mean
and
Control 6 month change
(4.74) (3.44) (8.08) (9.05) (11.19)
-2.92 3.54 7.29 6.00 -3.67 NA.
(5.10) (6.06) (9.11) (7.82) (9.63)
Group
Baseline
3 week change
6 month change
18.39 48.21 29.71( 27.04 12.68
NA NA NA NA NA
-1.25 4.07 0.39 0.43 1.82
not applicable.
(7.1 I) (5.92) 10.93) (8.08) (9.07)
P-value of analysis of covariance
(N = 28)
(4.40) (7.15) (5.99) (4.92) (5.81)
0.165 0.769 O.OiJl 0.002 0.02
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spectively): people with more severe disease carried out a greater range of home exercise activities more times per week. A long delay of several years between onset of symptoms and diagnosis is characteristic of this type of arthritis (AS). Longer diagnostic delay was found to be associated with greater severity (r = 0.45, P < O.OOl), more severe functional impairment (r = 0.31, P <0.05) and performance of a greater range (r = 0.28, P co.05 ) and frequency of home exercise activities (r = 0.27, P < 0.05). 3.2. Effects of group educatidit
Both intervention and control groups were assessed at baseline and 6 months post-intervention. The intervention and control group were compared using analysis of covariance with mean scores on depression, severity, functional index and self-efficacy at final assessment as the dependent variables and baseline scores of each dependent variable as the covariate. The SMC-AS was found to have positive effects on depression (Fl, 50 = 5.74, P = 0.02) Self-efficacy: General (Fl, 50 = 12.38, P = 0.001) and Self-efficacy: Symptoms (Fl, 50 = 11.02, P = 0.002). There were no significant effects of the SMC-AS on disease severity or physical functioning, although a trend towards improvement on severity amongst the intervention group was noted. Effect sizes were calculated using the following formula: Effect size = X, - X, / S.D., where X, = mean score of the intervention group, X, = mean score of the control group, and S.D., = standard deviation of the control group (all values are post-intervention) [36]. The effect sizes for depression, Self-efficacy: General and Self-efficacy Symptoms were 0.59, 0.49 and 0.41, respectively. These values are in accordance with a medium effect size (i.e. 0.50) as denoted by Cohen 1371. Change scores between baseline and final assessment on exercise range and exercise frequency were calculated for both the intervention and control group and were compared using Mann Whitney U-tests. No significant differences
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were found, although a trend towards an increase in range of home exercise activities amongst the intervention group could be identified. Support was obtained for hypotheses 1: attending the SMC-AS significantly increased arthritis self-efficacy. Hypothesis 2 was partially supported: although no significant differences were found between intervention and control group on physical health status, a trend towards improvement on disease severity could be identified and the SMC-AS had a statistically significant positive effect on psychological well-being. Both intervention and control group reported a positive change on physical functioning. The significant, short-term improvements on exercise range and frequency and the trend towards a longer term increase in range of exercise activities provide qualified support for hypothesis 3. 3.3. Pattern of change in the intervention
group
The pattern of change in the intervention group was examined at three points in time (baseline, 3 weeks and 6 months) using repeated measures analysis of variance on the dependent variables of Severity, Functional Index, Self-efficacy and Depression. Time had a significant effect on Severity (Wilks’ Lambda P = 0.005) Functional Index (Wilks’ Lambda P < O.OOOl), Self-efficacy: General (Wilks’ Lambda P = 0.003) and Selfefficacy: Symptoms (Wilks’ Lambda P = 0.004). From baseline to 3 weeks the intervention group improved in terms of Severity, Self-efficacy: Symptoms and Self-efficacy: General (P = 0.001 in each case). The improvement on Functional Index at 3 weeks was significant at P < 0.0001. The effect of time on depression was not statistically significant overall (Wilks’ Lambda P = 0.16). However, the change between baseline and 3 weeks was significant at the 5% level. The greatest improvement on all dependent variables occurred during the 3 weeks following the course and was maintained over time. Trends towards continued improvement were observed but did not reach statistical significance (mean change scores are presented in Table 2). Regarding home exercise activity, changes between baseline and 3 weeks post-intervention
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were analysed using Wilcoxon Matched-Pairs Signed-Ranks Test. The intervention group reported an increase in the range of home exercise activities carried out (P = 0.0004) and an increased frequency of home exercise sessions (P = 0.0023). Change between 3 weeks and 6 months post-intervention assessments were analysed using Wilcoxon Matched-Pairs Signed-Ranks Test for the exercise variables. Both exercise range and exercise frequency had significantly decreased at 6 months (P = 0.04 and P = 0.007, respectively). Fig. 1 illustrates the pattern of change over time on frequency and range of home exercise activities. The importance of social support was evident in response to open-ended questions regarding
Pattern Exercise
Graph 1: of Change in Frequency of Home Activities for the Intervention Group
1
04
6 months
Baseline
Pattern
Graph 2: of Change in Range of Home Exercise Activities for the Intervention Group
6 months
Baseline
Fig. 1.
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perceived outcomes of the SMC-AS. People reported that they valued ‘the opportunity to meet others with the same condition’, which enabled them to discuss common experiences and exchange coping strategies. During the 2-day course, they came to realise that they were ‘not alone’. One young, male participant had started an exercise group in his locality 6 months after attending the SMC-AS.
4. Discussion
4.1. Findings The positive association between severity and exercise at baseline suggests that people with greater perceived severity are more likely to adhere to therapeutic exercise. Hence, as group participants began to ‘feel better’ in terms of pain, stiffness and psychological well-being, motivation to carry out therapeutic exercise may have declined. This intriguing finding warrants further, more detailed exploration and has implications for clinical practice. The additional factor found to influence home exercise activity was that of diagnostic delay. The findings of the present study are in accordance with previous research amongst this patient population [18], showing that the longer people wait for a medical diagnosis, the more likely they are to adhere to a programme of therapeutic exercise. Hence, the essentially negative experience of waiting several years for a confirmed diagnosis has an unexpected positive outcome in terms of carrying out the therapeutic recommendations of health professionals. Both the intervention and control groups demonstrated improvements in physical functioning. Reasons for this improvement amongst the control group remain unclear. Measurement of functional ability in AS is in the early stages of development. Functional scales validated amongst samples of people with rheumatoid arthritis or osteoarthritis may not capture problems of the axial skeleton found in AS. The Functional Index used in this study was designed specifically for AS. Nevertheless, the restricted
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range of responses obtained suggests the measure may not provide an accurate reflection of functional variation. There is evidence that people with AS tend to underestimate their functional difficulties [29] and use unusual movements or gadgets to assist in problem areas [30]. The latter has been taken into account in a new functional scale [30] which may provide a more reliable and sensitive measure for use within this population. The short, intensive self-management course for people with AS (SMC-AS) was effective in promoting positive change on expectations and psychological well-being but was less successful in promoting long-term change in exercise behaviour. As reported in studies of exercise behaviour amongst the general population [12], rates of adherence showed an initial increase after the course and then tends to decline over time. Failure to maintain change over time through patient education has been reported in a hospital based study of people with rheumatoid arthritis in The Netherlands [31]. With the exception of pain self-efficacy, few long-term effects were evident 14 months after delivery of an adapted version of the Arthritis Self-Management Programme [32]. In contrast, Lorig and Holman (1993) report long-term improvements on pain, depression and arthritis self-efficacy at 20 months and 4 years after attending the Arthritis Self-Management Programme (ASMP) in the USA [33]. It should be noted that the ASMP is designed for people with all types of mild to moderate arthritis and consists of 12 h tuition spread over a period of 6 weeks. The majority of participants in the studies reviewed by Lorig and Holman were women with osteoarthritis with a mean age of 6.5 years. In contrast, the focus of the present study was on a short, intensive course (12 h in 2 days) designed for people with a type of arthritis, AS, which is more prevalent in men and has an early age of onset. The majority of participants were male with a mean age of 42 years. Thus it is not clear whether the sustained benefits reported by Lorig et al. derive from the characteristics of ASMP participants, such as type of arthritis, age, gender, cultural differences between North Americans and Europeans, or
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variation in the format of each educational programme. Regarding the nature of outcomes of patient education, there is increasing evidence that educational programmes do not have great impact on physical functioning amongst people with arthritis. Rather, the main benefits appear to centre on psychological well-being (e.g. depression) and confidence in self-management of the condition (i.e. self-efficacy). For example, Basler (1993) showed that for people with AS recruited through the German self-help organisation, the main effects of attending a cognitive-behavioural programme were on well-being (e.g. depression) and self-efficacy [9]. Little change was found on indicators of disease severity, such as pain. Similarly, evaluations of the ASMP report positive effects on depression and self-efficacy [33]. These findings were replicated in the present study which showed that a short, intensive patient education programme for people with AS had significant, positive effects on depression and self-efficacy expectations; factors of patient wellbeing which have rarely been considered in previous evaluations of educational programmes for this patient population.
4.2. Limitations
Limitations of the present study are the lack of a randomised control group and the relatively small numbers of participants. The mode of recruitment to the courses did not allow for randomisation, hence a matched control group was used. The interactive nature of the course limits the number of participants on each course to a maximum of 15. Thus findings from several course evaluations need to be combined in order to attain a large sample size. The present study is the first evaluation of this form of patient education for AS, and as such has to be considered exploratory. Further evaluations could be improved by extending the range of outcomes assessed to include dimensions such as illness acceptance, social support, monitoring of mobility and performance of general exercise activities (e.g. swimming). Analysis of change
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over time to determine whether improvements are maintained in the long term, is an important aspect of evaluating intervention programmes. Maintenance of change is particularly salient in the context of chronic conditions which involve long-term disease management. A time series approach providing multiple data points covering longer periods (e.g. over 2 years) is needed to understand more fully the pattern and process of change following group patient education. The intervention format may be considered a limitation. There was no opportunity for contact between course participants and course tutors after the end of the course. Thus feedback, encouragement and advice on performance of exercise activities was only available from course tutors during the two day intervention. Future courses will be open to partners who can learn when and how to provide feedback, support and encouragement to people with AS. This strategy may help to facilitate development of self-management, self-efficacy and behavioural change amongst participants.
4.3. Implications The success of the SMC-AS in promoting shortterm gains in exercise adherence and long-term enhancement of psychological well-being and self-efficacy indicates that such courses are worthy of further exploration. The inclusion of psychosocial variables in the evaluation has enhanced understanding of the effects of group education where a key component is promotion of behavioural change. The improvements in well-being, evident 6 months after the intervention, were not matched by sustained improvement on therapeutic exercise. In conditions such as arthritis, it is important that exercise treatment is maintained even when perceived disease severity improves. The results suggest that booster sessions may be necessary to enhance maintenance of the short-term improvements in exercise behaviours. Evidence deriving from course feedback suggests that attending such intensive courses once or twice a year may be the preferred mode of treatment for some members of
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this patient population. Drawbacks of short, intensive patient education programmes are the lack of continued contact after the programme and the wealth of information which participants have to absorb, remember and act on in the home environment. Strategies to overcome these drawbacks are mutual support through a telephone ‘buddy’ system and provision of detailed information packs describing home exercise activities. Sessions dedicated to assisting participants with individual goal setting and the design of a personal home exercise activity plan may also help to sustain motivation in the home environment. Inviting partners to attend the course may be one method to ensure that the individual has a source of informed feedback and support in relation to home exercise activities. Provision of short educational programmes run outside of formal health care may be one means of offering people with AS the opportunity to master selfmanagement techniques in a safe environment. The practice implications are summarised in Table 3 and are based on the key features of course content, the course evaluation methodology employed and the suggested improvements deriving from the findings of the study reported here.
4.4. Conclusions Although there was a lack of sustained improvement in exercise behaviour following the group education programme, the positive effects on well-being and self-efficacy should not be under estimated. Self-efficacy is an important factor influencing both physical and psychological health status across a variety of patient and non-patient populations [16,33] and has been shown to play a mediating role in the relationship between disease severity and psychological well-being [l&19]. Promotion of arthritis selfefficacy through group patient education could be utilised as a relatively low cost means of enhancing quality of life amongst people who are not only vulnerable to psychological distress but also need assistance in the long-term management of their condition.
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Table 3 Practice implications Course
(i) (ii) (iii) (iv) (v) (vi) (vii) (viii) (xi)
content
to include
Mastery experiences - opportunity to try out exercises in safe environment Role modelling - observing similar others carrying out exercises Discussion and development of mutual support Verbal and written information Goal setting Development of a personal home exercise activities plan Feedback and reinforcement during the course Suggestions for mobilising support in the home environment e.g. from family, telephone Booster sessions to remind and sustain motivation
Evaluation
to include
(i) Change in physical, psychological and social health status (ii) Change in behaviours (iii) Longitudinal assessment at multiple time points
Acknowledgements
This research was supported by a grant to the first author from the Nuffield Foundation. The authors would like to thank Chris Wright for advice on statistical analysis, and Julius Sim and two anonymous reviewers for comments on an earlier version of this manuscript.
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