http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2014; 36(21): 1762–1767 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2013.868535
RESEARCH PAPER
Disabilities of importance for patients to improve – using a patient preference tool in rheumatoid arthritis Li Alemo Munters1,2*, Nina Brodin3,4*, Elin Lo¨fberg4, Sara Stra˚t4, and Helene Alexanderson2,3 1
Department of Medicine, Rheumatology Unit, Karolinska Institutet, Stockholm, Sweden, 2Department of Physiotherapy, Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden, 3Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Huddinge, Sweden, and 4Department of Orthopaedics, Division of Physiotherapy, Danderyd Hospital, Stockholm, Sweden
Abstract
Keywords
Purpose: To investigate, using the McMaster Toronto Arthritis patient preference disability questionnaire (MACTAR), disabilities most important to improve in Swedish patients with rheumatoid arthritis (RA) and to compare these with the pre-defined activities in the International Classification of Functioning (ICF) comprehensive core set for RA and the Stanford Health Assessment Questionnaire (HAQ). Also to categorize patient preference selected disabilities using the ICF, to correlate the MACTAR score to RA core set measures and to evaluate the MACTAR’s test–retest reliability. Methods: 45 patients with RA (median (md) age 59 years, diagnosis duration md 10 years) were included. Assessments included disease activity score (DAS28), timed-stands test (TST), shoulder function assessment (SFA), visual analogue scale for pain (VAS), HAQ, patients’ global assessment of well-being (PGA) and the MACTAR. Results: 58 disabilities were identified of which 17 were identified by at least 5 patients. 47% of them were represented in the Comprehensive ICF RA core set and 53% in the HAQ. 16/17 were categorized in the ICF activities and participation component. Correlations between the MACTAR and other measures were: DAS28 (rs 0.65), TST (rs 0.19), SFA (rs 0.38), VAS (rs 0.61), HAQ (rs 0.51) and PGA (rs 0.61). Weighted was 0.59. Conclusions: Half of the disabilities patients with RA identified by use of the MACTAR are not evaluated in the Comprehensive ICF core set for RA or the HAQ. MACTAR has moderate test–retest reliability. MACTAR can be considered to be used in addition to traditional RA outcomes and may potentially improve clinical assessment of patients with RA.
Activities of daily living, ICF, individual preferences, rheumatoid arthritis History Received 9 April 2013 Revised 17 November 2013 Accepted 19 November 2013 Published online 24 December 2013
ä Implications for Rehabilitation
RA has an impact on personal life areas. The MACTAR helps identify individual disease-related disabilities of importance to improve. The MACTAR provides an opportunity for individualized goal-setting in rehabilitation and can thus promote adherence in rehabilitation. MACTAR may potentially improve clinical assessment for patients with RA.
Introduction Rheumatoid arthritis (RA) is one of the most common inflammatory rheumatic diseases affecting the individual on many levels. Core set of disease activity assessments in RA includes laboratory evaluation, the physician’s global assessment of disease activity and joint counts and the patient’s ratings of pain and global disease activity, along with assessment of physical function [1]. The European League Against Rheumatism (EULAR) and The American College of Rheumatology (ACR) collaborations recommend that patient-reported outcomes *Li Alemo Munters and Nina Brodin equally contributed to this work. Address for correspondence: Nina Brodin, Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, 23100, 14183 Huddinge, Sweden. Tel: +46 8 524 888 43. Fax: +46 8 524 888 13. E-mail: [email protected]
(PRO’s) should also be included in the assessment of RA [2]. The most frequently used PRO for assessing activity limitation in RA is the Stanford Health Assessment Questionnaire (HAQ); a measure with questions concerning pre-defined activities [3]. The McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) is a measure based on the patient’s preference for improvement of his or her selected and prioritized disabilities [4]. The MACTAR was further developed into a semistructured interview and is reportedly valid, and more responsive to Disease Modifying Anti Rheumatic Drug (DMARD) treatment [5,6] and more sensitive to physical exercise treatment [7] than the HAQ. The International Classification of Functioning, Disability and Health (ICF) [8] comprises two components, Body Functions and Structure and Activity/Participation, to form a scientific basis for understanding health and health-related conditions and their consequences (Table 1). Derived from the ICF, there is also a
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Table 1. The parts of the ICF including components, positive and negative aspects. Functioning and Disability
Contextual factors
Components
Body Functions and Structures
Positive aspect
Functioning Functional and structural integrity Activities Participation
Negative aspect Impairment
Activities and Participation
Disability Activity limitation Participation restriction
specific ICF core set for patients with RA [9]. The comprehensive ICF core set for RA includes 96 categories divided into: 25 categories describing body functions: 18 describing body structures: 32 describing activities and participation and 21 describing environmental factors [9]. The MACTAR focuses on disabilities identified and prioritized by the patient herself or himself as important to improve, as opposed to the HAQ which has fixed items to be assessed by the patient. The MACTAR has recently been translated into Swedish using the forward–backward principle [10] and tested in patients with polymyositis and dermatomyositis (PM and DM) in a Swedish context. The translated version showed satisfying measurement properties [11] and also revealed several patientidentified disabilities not covered by PRO’s used in myositis. Studies suggest that patient-preference measures with selfselected items could be more sensitive to change than predefined, fixed-item measures [4,6,7,12–20]. Fixed-item questionnaires may include disabilities not relevant for all patients and may omit disabilities important to some [4–6,11,13,14,21–23]. International collaboration such as the EULAR, Care III (nonpharmacological care for people with arthritis, third meeting) and OMERACT 7 (Outcome Measures in Rheumatology, seventh meeting) have identified the outcomes assessing patient preference as a highly important research area for the future [24–26]. A widespread use of patient preference instruments in addition to traditional measures in rheumatic conditions could potentially improve clinical assessment and thus the care of these patients. The present aims were (1) to investigate, using the MACTAR, the disabilities patients with RA in a Swedish cohort most wished to improve and (2) to compare the self-reported disabilities with predefined fixed-item RA measures, (3) to categorize the identified disabilities using the ICF, (4) to correlate the MACTAR with RA core set measures and (5) to evaluate the test–retest reliability of the MACTAR and concordance of the identified disabilities over a week.
Patients and methods Patients All patients at the Rheumatology Clinic at Danderyd Hospital, Stockholm, Sweden diagnosed with RA and fulfilling inclusion criteria between March and August 2006 were invited to participate. Inclusion criteria were; (a) RA diagnosis according to the American College of Rheumatology (ACR) criteria [27], (b) diagnosis duration of 6 months, (c) age 570 years. Our exclusion criteria were; (a) not speaking and understanding Swedish, (b) 416 days since disease activity score (DAS28) administered by a rheumatologist. Written information about the study was handed to the patients at their rheumatologist appointment. They were then all contacted by a physical therapist for informed consent. Seventy-eight patients fulfilled our inclusion criteria and were invited in to the study as they received the written information. Six patients were excluded as 416 days had passed since their last DAS28
Environmental Factors
Personal Factors
Facilitators
n.a
Barriers/hindrances
n.a
Table 2. Descriptive data on 45 patients with rheumatoid arthritis at baseline. Descriptive data Gender, female/male, n Age, years Diagnosis duration, years HAQa score (0–3) PGAb (0–100) MACTARc score (39–59) Pain (0–100) SFAd (0–60) TSTe seconds
Median (md)
Quartiles (Q1–Q3)
33/12 59 10 0.88 28 51 21 58 25
(52–65) (4–21) (0.63–1.50) (19–54) (48–55) (5–51) (53–60) (21–33)
a
Stanford Health Assessment Questionnaire Disability Index. Patient global assessment of well-being. McMaster Toronto Arthritis patient preference questionnaire. d Shoulder Function Assessment (n ¼ 42). e Timed-stands test (n ¼ 42). b c
administration, to ensure that patients would still be in a stable disease phase when entering the study. Eighteen declined participation for reasons such as lack of time, stressful work situation or vacation. The DAS28 disease activity measure was not used with four patients, who were also excluded. Two patients were excluded due to logistic problems and three did not respond to the invitation. Thus, 45 patients participated, 33 women and 12 men, with a median (md) age of 59 lower and upper quartiles (Q1–Q3) of 52–65 years and a mean DAS28-score of 3.50 (SD 1.45). For demographic and descriptive data, see Table 2. Assessments One part of the McMaster Toronto Arthritis patient-preference disability questionnarie (MACTAR) concerns the disabilities prioritized by the patients, and the other how different aspects of health are affected by the rheumatic disease: global health, physical function, social function, and emotional function [5,11]. In the latter part of the interview the patient is asked to identify all disabilities related to his or her rheumatic disease. The interviewer helps with examples of areas, e.g. domestic, personal hygiene, work, outdoor activities, social activities, sexuality, sleep, and relations to family, partners and children. The disabilities identified are then ranked by the patient as to importance of improvement. The five highest-ranked disabilities are recorded. In the Verhoeven 2000 version of the MACTAR, an unweighted scoring system is used generating scores 19–39 where 39 indicates no disability [5]. A weighted scoring system can also be used, as in the present study, with scores thus varying from 39–59 where 59 indicates no disability. The prioritized disability part is scored 10 for the highest ranked activity, 8 for the next highest, down to 2 for the lowest of the five. Global health is scored on a 3-point scale, while questions on physical, social and emotional function are scored on a 5-point scale. The DAS28 was used to describe disease activity. It contains scores for number of swollen and tender joints, erythrocyte
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sedimentation rate (ESR), C-reactive protein (CRP) and patient’s rating of general health on a visual analogue scale (VAS), 0–100. The DAS28 score varies between 0 and 10, 0 indicating low disease activity [28]. The timed-stands test (TST) was used to assess lowerextremity muscle function. It is scored as the time in seconds required to stand up and sit down ten times from and on a 45-cm-high chair [29]. The Shoulder Function Assessment (SFA) assesses upper-extremity function including five functional tasks; handto-ceiling, hand-to-opposite-shoulder, hand-to-neck, hand-to-back and hand-to-sacrum [30]. Each task is scored on a six-grade scale from 1 to 6. Total score varies from 10 to 60, where 60 indicates normal function. In addition the VAS, 0–100 is used to assess subjective pain during performance of each task. Total score for the VAS varies between 0 and 100, where 0 indicates no pain. The VAS, 0–100, was also used to assess overall pain, 0 indicating no pain [31]. The HAQ is a questionnaire widely used to assess activity limitation in RA [3,32]. Its 20 activities are divided into eight categories: dressing and grooming, rising, eating and preparing meals, walking, personal hygiene, reach, grip, and other activities. Total score varies from 0 to 3, where 0 indicates no limitation. The global assessment of patients’ well-being (PGA) was assessed on a VAS, 0–100, 0 indicating good well-being [28]. Study procedures The DAS28 was administered by a rheumatologist during a regular scheduled appointment. During this visit the rheumatologist also determined if the patients had stable disease activity and medication (unchanged disease activity according to the DAS28 and unchanged medication the past 3 months). At the first physical therapy appointment the MACTAR, HAQ, TST, SFA, PGA and pain ratings were performed. Eight patients did not return for a second appointment, for logistic reasons; thus 37 (27 women, 10 men, age md 59 (Q1–Q3 52– 65) years, disease duration md 10 (Q1–Q3 4–21) years) were included to perform the MACTAR once again one week later. Test and retests were performed by the same of either two experienced physical therapists at the Department of Physiotherapy at Danderyd hospital, Stockholm. Before including patients, the two physical therapists did two MACTAR interviews each in clinical practice to familiarize themselves with the measure. Analysis and statistics As the MACTAR produces ordinal data, descriptive data are presented as median values (md) and lower and upper quartiles (Q1–Q3). The prioritized disabilities of the MACTAR were presented and compared descriptively with the items in the comprehensive ICF core set for RA and HAQ and categorized using the ICF Browser [33]. Spearman’s correlation coefficient (rs) was used to analyze correlations between the MACTAR score and other measures. Correlation coefficients rs 0.90–1.0 were concidered as very high, rs 0.70–0.89 as high, rs 0.50–0.69 as moderate, rs 0.26–0.49 as low and rs 0.00–0.25 as very low or no correlation [34]. For analysis of random variations between test and retest, weighted coefficient (Kw) was used. Weighted coefficients were interpreted as; Kw 0.81–1.0 very good, Kw 0.61–0.80 good, Kw 0.41–0.60 moderate, Kw 0.21–0.40 fairly poor and Kw520 very poor [35]. For analysis of systematic variation between test and retest, the sign test was used, a level set to p40.05. Descriptive analysis of concordance and analysis of identified
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disabilities and their ranking in the first and second MACTAR interview were used. Ethics and consent The study was approved by the regional ethics committee in Stockholm (dnr. 2005/1518-31/2) and all patients signed informed consent forms.
Results Patients’ preference comparison to ICF core set for RA and HAQ, and ICF categorization The most commonly identified disabilities the patients found important to improve were; fatigue in relation to social activities (n ¼ 26), walking/hiking (n ¼ 21), sleep (n ¼ 19), heavy lifting (n ¼ 15), cooking (n ¼ 15), and gardening (n ¼ 15) (Table 3). A total of 58 disabilities were identified. Seventeen disabilities were identified by at least 5 patients and of these, 47% were represented in items of the Comprehensive ICF core set for RA and 53% were represented in the items of HAQ (Table 3). Of the most frequently identified disabilities (n ¼ 17), 1 was categorized in the ICF Body Functions and Structures component and 16 in the Activities and Participation component (Table 3). Correlations between the MACTAR and other measures Spearman correlations between the MACTAR and other measures revealed moderate correlations with the DAS28 (rs 0.65), pain (rs 0.61), PGA (rs 0.61) and with the HAQ (rs 0.51), low correlation with the SFA (rs 0.38) and very low correlation with the TST (rs 0.19). Test–retest reliability The weighted coefficient of the MACTAR total score at the first and second assessments was Kw 0.59 (moderate reliability) with no systematic differences (sign test, p ¼ 0.22). 36% of the identified disabilities and rankings were identical at the first and second MACTAR assessments, 23% were ranked one level higher or lower at second assessment and the remaining activities (41%) were ranked two or more levels higher or lower at the second assessment, or not identified at all at the first assessment (Table 4).
Discussion This is the first study to use the MACTAR to investigate the disabilities patients with RA in Sweden most wish to improve. The three disabilities rated as most important were fatigue in relation to social life, walking and sleep. Half of the identified disabilities are not included in the comprehensive ICF core set for RA or in the HAQ. The MACTAR score correlated moderately to measures of disease activity, pain, patients’ global assessment of well-being and activity limitations, while there were lower correlations to measures of body function. All except one of the identified disabilities were categorized in the ICF Activities and Participation component. Moderate test–retest reliability for the MACTAR score, and a moderate agreement of identified disabilities and their ranking between the first and the second assessments were revealed. Fatigue was also found important to evaluate according to the patient-perspective workshop at OMERACT 7 [26], while the OMERACT 8 workshop recommended that fatigue should be measured in all studies of RA [36]. In the Dutch validation of the MACTAR, the most frequently-identified disabilities were moving around (23%), i.e. bicycling, driving, walking and stairclimbing, while fatigue and sleep were only identified by 1% of
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Table 3. Disabilities identified by at least five patients with RA of total 45 using the MACTAR, comparison of identified disabilities and predefined items in the ICF core set for RA and the HAQ, and categorization of identified disabilities using the ICF. Disabilities identified using the MACTARa
ICF-score set RAb
Men/women
Fatigue in relation to social life (n ¼ 26) Walking/hiking (n ¼ 21) Sleep (n ¼ 19) Heavy lifting (n ¼ 15) Gardening (n ¼ 15) Cooking (n ¼ 15) Cleaning/vacuuming (n ¼ 14) Personal care (n ¼ 14) Get dressed (n ¼ 11) Gymnastics/aerobics (n ¼ 10) Sexual activity (n ¼ 9) Bicycling (n ¼ 8) Stair climbing (n ¼ 8) Sewing/knitting (n ¼ 6) Employment (n ¼ 5) Get in and out of a car (n ¼ 5) Twist open can (n ¼ 5)
6/20 4/17 4/15 2/13 3/12 4/11 2/12 5/9 5/6 1/9 5/4 1/7 4/4 0/6 1/4 2/3 2/3
NR Included Included Included NR Included NR Included Included NR NR NR NR NR Included Included NR
HAQc
ICF level and code
NR Included NR Included NR Included Included Included Included NR NR NR Included NR NR Included Included
Activity/participation (d 9205) Activity/Participation (d 450) Body functions (b 134) Activity/Participation (d 430) Activity/Participation (d 6505) Activity/Participation (d 630) Activity/Participation (d 6403) Activity/Participation (d 510) Activity/Participation (d 540) Activity/Participation (d 9201) Activity/Participation (d 7702) Activity/Participation (d 4750) Activity/Participation (d 4551) Activity/Participation (d 9203) Activity/Participation (d 850) Activity/Participation (d 410) Activity/Participation (d 550)
Included ¼ Identified disability is also included as an item in the ICF core set for RA or the HAQ, NR ¼ Identified disability is only partly or not at all included as an item in the ICF core set for RA or the HAQ. a McMaster Toronto Arthritis patient preference questionnarie. b International classification of functioning, disability and health core set for reumatoid arthritis, comprehensive version. c Stanford Health Assessment Questionnaire Disability Index.
Table 4. Concordance of the top five prioritized activities and their ranking at first and second MACTAR assessment (n ¼ 37). MACTAR first assessment 1 MACTAR second assessment 1 2 3 4 5 Activity not mentioned at first assessment
24 4 3 2 1 3
2
3
4
5
8 14 4 2 1 8
3 6 8 7 1 12
0 2 6 12 6 11
0 2 3 1 9 22
the patients [5]. Our results are in line with the Dutch study regarding disabilities related to mobility but diverge when identifying fatigue and sleep. Sleep was identified at the OMERACT 6 workshop as an outcome important to patients [37] and in the OMERACT 9 workshop sleep disturbances in inflammatory arthritis was a main focus and recommended for evaluation [38]. Interestingly, we were able to capture these important outcomes using the patient preference MACTAR. The diversity of identified disabilities (n ¼ 58) among arthritis patients has been described previously [39] and supports the need for patient preference assessment and self-selected items. The number of patients included in this study was limited and most patients had low disease activity which hampers our ability to generalize the identified disabilities to individuals of all ages and various disease activity of RA. The HAQ index which does not include fatigue and sleep items, contained only 53% of the most frequently identified disabilities using the MACTAR. A limited concordance was also seen in the Dutch study reporting that 48% of frequentlyidentified disabilities were represented by items in the HAQ [5]. These differences in concordance might be due to several factors. The HAQ was developed in the 1980s and the demands on patients’ daily life might have changed with time. Fatigue in social activities was among the most important disabilities to improve in
our study, but this disability was not included in the RA core set or the HAQ. The other disabilities most important to improve – walking/hiking, sleep, heavy lifting and gardening – are all included in the RA core set, while sleep is also not represented in the HAQ. Sexual activity was identified as important to improve, yet outcomes with predefined items frequently used in patients with RA contain no questions about sexual activity. In addition, using the MACTAR, sexual activity was the disability most deemed in need of improvement in patients with chronic polymyositis and dermatomyositis [11]. These results indicate that sexual activity is an important part of life affected by rheumatic disease. It might be easier to talk about limitations in sexual activity in an interview than answering closed questions in a questionnaire. The MACTAR may assess disabilities not covered by traditional outcomes, and these tallies with studies stating that predefined outcome questionnaires might not cover all activities highly prioritized by patients while some of the activities included might be irrelevant for some patients [23]. The most commonly identified disabilities important to improve were largely represented in the ICF component Activity/Participation, while only one was included in the body functions and structures component. Note that this diverges from what consensus outcomes assess. According to a recent study, the majority of the the most common clinical outcome measures used in rehabilitation of arthritis patients assess the ICF component Body functions [40]. This supports the importance of the additional use of a patient preference measure. Rehabilitation tailored towards patient led priorities might result in improved outcomes and patient satisfaction. But it might need interventions using skills from a wider multidisciplinary team. The MACTAR correlated best to measures of disease activity, pain and patients’ global assessment of disease effect on wellbeing. The Dutch MACTAR correlated well to disease activity [5], which was also the case with the HAQ [41]. However, this apparently differs from studies of polymyositis and dermatomyositis where the MACTAR and the Myositis Activities Profile (MAP) revealed low correlations to measures of disease activity [11,42]. One explanation could be that pain is a major complaint in RA, perhaps closely related to tender and swollen joints. On the other hand it is not a classic symptom in myositis, where a
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discrepancy has been established regarding degree of muscle inflammation and degree of muscle impairment and activity limitation [43–45]. Although the correlations were moderate between the MACTAR and measures of disease activity, pain and activity limitation it probably adds new information on disease impact important to individual patients. It can thus be a valuable complement to traditional outcome measures both in clinical practice and in research. The low correlations to the impairment measures SFA and TST could be due to that they are tests of functional capacity while the MACTAR evaluates performance. There was moderate test–retest reliability over one week of the MACTAR score which is in concordance with the validation of the MACTAR in myositis patients, while the Dutch MACTAR has still not been validated regarding test–retest reliability. However, there might be a seasonal variation in priorities of disabilities [6] and this has been confirmed by a French study in patients with systemic sclerosis [46,47]. For example, gardening, which was highly prioritized in our study, would probably not be so prioritized if the study had been conducted during winter time. Since activities of daily living vary with seasons and disease status, one possible limitation of the MACTAR could be that disabilities lose relevance during a longer follow-up period. The change over one week in priority ranking of the disabilities indicates that the use of unweighted scores is more relevant then weighted scores. Most patients with RA experience day-to-day variation of some degree and it cannot be ruled out that the patients participating in this study experienced positive effects of ongoing exercise. However, a 1-week period is not enough to experience significant effects of exercise. Possible subjects were probably lost because this study was conducted during the spring and summer: vacations were one frequent reason for not coming to the clinic. Another possible influence on the results is that patients with RA often feel better during the summertime than in the cold winter and typical winter activities such as skiing were not up for assessment. No patients with recent onset or very active disease were included, which might also have influenced the results. However, participating patients varied in gender, age, diagnosis duration, and pain, supporting the external validity of the study. The exclusion criterion disease duration less than six months was intended to avoid the risk of patients going through crisis reactions during the diagnosis period, when they might not have accepted that they had a chronic disease.
Conclusion The MACTAR identified fatigue in relation to social activities, walking, and sleep, as the three disabilities patients with RA in Sweden most wished to improve. The MACTAR has moderate testretest reliability and could be useful for assessing disabilities important to the patient but not covered in recommended RA outcome measures. A use of MACTAR in addition to traditional measures could improve not only assessment and evaluation of interventions but also the understanding of what the individual prioritizes and thus better target the rehabilitation of patients with RA.
Declaration of interest This work was financially supported by the Center for Health Care Science, Karolinska Institutet, Stockholm, Sweden. The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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37. Kirwan J, Heiberg T, Hewlett S, et al. Outcomes from the patient perspective workshop at OMERACT 6. J Rheumatol 2003;30: 868–72. 38. Kirwan JR, Newman S, Tugwell PS, et al. Progress on incorporating the patient perspective in outcome assessment in rheumatology and the emergence of life impact measures at OMERACT 9. J Rheumatol 2009;36:2071–6. 39. Kwoh CK, Ibrahim SA. Rheumatology patient and physician concordance with respect to important health and symptom status outcomes. Arthritis Rheum 2001;45:372–7. 40. Hagel S, Lindqvist E, Petersson IF, et al. Validation of outcome measurement instruments used in a multidisciplinary rehabilitation intervention for patients with chronic inflammatory arthritis: linking of the International Classification of Functioning, Disability and Health, construct validity and responsiveness to change. J Rehabil Med 2011;43:411–19. 41. Salaffi F, Cimmino MA, Leardini G, et al. Disease activity assessment of rheumatoid arthritis in daily practice: validity, internal consistency, reliability and congruency of the Disease Activity Score including 28 joints (DAS28) compared with the Clinical Disease Activity Index (CDAI). Clin Exp Rheumatol 2009;27:552–9. 42. Alexanderson H, Lundberg IE, Stenstrom CH. Development of the myositis activities profile – validity and reliability of a selfadministered questionnaire to assess activity limitations in patients with polymyositis/dermatomyositis. J Rheumatol 2002;29:2386–92. 43. Plotz PH, Dalakas M, Leff RL, et al. Current concepts in the idiopathic inflammatory myopathies: polymyositis, dermatomyositis, and related disorders. Ann Intern Med 1989;111:143–57. 44. Dorph C, Englund P, Nennesmo I, et al. Signs of inflammation in both symptomatic and asymptomatic muscles from patients with polymyositis and dermatomyositis. Ann Rheum Dis 2006;65: 1565–71. 45. Mastaglia FL, Phillips BA. Idiopathic inflammatory myopathies: epidemiology, classification, and diagnostic criteria. Rheum Dis Clin North Am 2002;28:723–41. 46. Nguyen C, Mouthon L, Mestre-Stanislas C, et al. Sensitivity to change in systemic sclerosis of the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR): shift in patient priorities over time. J Rheumatol 2010;37:359–64. 47. Mouthon L, Rannou F, Berezne A, et al. Patient preference disability questionnaire in systemic sclerosis: a cross-sectional survey. Arthritis Rheum 2008;59:968–73.
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RESEARCH PAPER
Disabilities of importance for patients to improve – using a patient preference tool in rheumatoid arthritis Li Alemo Munters1,2*, Nina Brodin3,4*, Elin Lo¨fberg4, Sara Stra˚t4, and Helene Alexanderson2,3 1
Department of Medicine, Rheumatology Unit, Karolinska Institutet, Stockholm, Sweden, 2Department of Physiotherapy, Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden, 3Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, Huddinge, Sweden, and 4Department of Orthopaedics, Division of Physiotherapy, Danderyd Hospital, Stockholm, Sweden
Abstract
Keywords
Purpose: To investigate, using the McMaster Toronto Arthritis patient preference disability questionnaire (MACTAR), disabilities most important to improve in Swedish patients with rheumatoid arthritis (RA) and to compare these with the pre-defined activities in the International Classification of Functioning (ICF) comprehensive core set for RA and the Stanford Health Assessment Questionnaire (HAQ). Also to categorize patient preference selected disabilities using the ICF, to correlate the MACTAR score to RA core set measures and to evaluate the MACTAR’s test–retest reliability. Methods: 45 patients with RA (median (md) age 59 years, diagnosis duration md 10 years) were included. Assessments included disease activity score (DAS28), timed-stands test (TST), shoulder function assessment (SFA), visual analogue scale for pain (VAS), HAQ, patients’ global assessment of well-being (PGA) and the MACTAR. Results: 58 disabilities were identified of which 17 were identified by at least 5 patients. 47% of them were represented in the Comprehensive ICF RA core set and 53% in the HAQ. 16/17 were categorized in the ICF activities and participation component. Correlations between the MACTAR and other measures were: DAS28 (rs 0.65), TST (rs 0.19), SFA (rs 0.38), VAS (rs 0.61), HAQ (rs 0.51) and PGA (rs 0.61). Weighted was 0.59. Conclusions: Half of the disabilities patients with RA identified by use of the MACTAR are not evaluated in the Comprehensive ICF core set for RA or the HAQ. MACTAR has moderate test–retest reliability. MACTAR can be considered to be used in addition to traditional RA outcomes and may potentially improve clinical assessment of patients with RA.
Activities of daily living, ICF, individual preferences, rheumatoid arthritis History Received 9 April 2013 Revised 17 November 2013 Accepted 19 November 2013 Published online 24 December 2013
ä Implications for Rehabilitation
RA has an impact on personal life areas. The MACTAR helps identify individual disease-related disabilities of importance to improve. The MACTAR provides an opportunity for individualized goal-setting in rehabilitation and can thus promote adherence in rehabilitation. MACTAR may potentially improve clinical assessment for patients with RA.
Introduction Rheumatoid arthritis (RA) is one of the most common inflammatory rheumatic diseases affecting the individual on many levels. Core set of disease activity assessments in RA includes laboratory evaluation, the physician’s global assessment of disease activity and joint counts and the patient’s ratings of pain and global disease activity, along with assessment of physical function [1]. The European League Against Rheumatism (EULAR) and The American College of Rheumatology (ACR) collaborations recommend that patient-reported outcomes *Li Alemo Munters and Nina Brodin equally contributed to this work. Address for correspondence: Nina Brodin, Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet, 23100, 14183 Huddinge, Sweden. Tel: +46 8 524 888 43. Fax: +46 8 524 888 13. E-mail: [email protected]
(PRO’s) should also be included in the assessment of RA [2]. The most frequently used PRO for assessing activity limitation in RA is the Stanford Health Assessment Questionnaire (HAQ); a measure with questions concerning pre-defined activities [3]. The McMaster Toronto Arthritis Patient Preference Disability Questionnaire (MACTAR) is a measure based on the patient’s preference for improvement of his or her selected and prioritized disabilities [4]. The MACTAR was further developed into a semistructured interview and is reportedly valid, and more responsive to Disease Modifying Anti Rheumatic Drug (DMARD) treatment [5,6] and more sensitive to physical exercise treatment [7] than the HAQ. The International Classification of Functioning, Disability and Health (ICF) [8] comprises two components, Body Functions and Structure and Activity/Participation, to form a scientific basis for understanding health and health-related conditions and their consequences (Table 1). Derived from the ICF, there is also a
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Table 1. The parts of the ICF including components, positive and negative aspects. Functioning and Disability
Contextual factors
Components
Body Functions and Structures
Positive aspect
Functioning Functional and structural integrity Activities Participation
Negative aspect Impairment
Activities and Participation
Disability Activity limitation Participation restriction
specific ICF core set for patients with RA [9]. The comprehensive ICF core set for RA includes 96 categories divided into: 25 categories describing body functions: 18 describing body structures: 32 describing activities and participation and 21 describing environmental factors [9]. The MACTAR focuses on disabilities identified and prioritized by the patient herself or himself as important to improve, as opposed to the HAQ which has fixed items to be assessed by the patient. The MACTAR has recently been translated into Swedish using the forward–backward principle [10] and tested in patients with polymyositis and dermatomyositis (PM and DM) in a Swedish context. The translated version showed satisfying measurement properties [11] and also revealed several patientidentified disabilities not covered by PRO’s used in myositis. Studies suggest that patient-preference measures with selfselected items could be more sensitive to change than predefined, fixed-item measures [4,6,7,12–20]. Fixed-item questionnaires may include disabilities not relevant for all patients and may omit disabilities important to some [4–6,11,13,14,21–23]. International collaboration such as the EULAR, Care III (nonpharmacological care for people with arthritis, third meeting) and OMERACT 7 (Outcome Measures in Rheumatology, seventh meeting) have identified the outcomes assessing patient preference as a highly important research area for the future [24–26]. A widespread use of patient preference instruments in addition to traditional measures in rheumatic conditions could potentially improve clinical assessment and thus the care of these patients. The present aims were (1) to investigate, using the MACTAR, the disabilities patients with RA in a Swedish cohort most wished to improve and (2) to compare the self-reported disabilities with predefined fixed-item RA measures, (3) to categorize the identified disabilities using the ICF, (4) to correlate the MACTAR with RA core set measures and (5) to evaluate the test–retest reliability of the MACTAR and concordance of the identified disabilities over a week.
Patients and methods Patients All patients at the Rheumatology Clinic at Danderyd Hospital, Stockholm, Sweden diagnosed with RA and fulfilling inclusion criteria between March and August 2006 were invited to participate. Inclusion criteria were; (a) RA diagnosis according to the American College of Rheumatology (ACR) criteria [27], (b) diagnosis duration of 6 months, (c) age 570 years. Our exclusion criteria were; (a) not speaking and understanding Swedish, (b) 416 days since disease activity score (DAS28) administered by a rheumatologist. Written information about the study was handed to the patients at their rheumatologist appointment. They were then all contacted by a physical therapist for informed consent. Seventy-eight patients fulfilled our inclusion criteria and were invited in to the study as they received the written information. Six patients were excluded as 416 days had passed since their last DAS28
Environmental Factors
Personal Factors
Facilitators
n.a
Barriers/hindrances
n.a
Table 2. Descriptive data on 45 patients with rheumatoid arthritis at baseline. Descriptive data Gender, female/male, n Age, years Diagnosis duration, years HAQa score (0–3) PGAb (0–100) MACTARc score (39–59) Pain (0–100) SFAd (0–60) TSTe seconds
Median (md)
Quartiles (Q1–Q3)
33/12 59 10 0.88 28 51 21 58 25
(52–65) (4–21) (0.63–1.50) (19–54) (48–55) (5–51) (53–60) (21–33)
a
Stanford Health Assessment Questionnaire Disability Index. Patient global assessment of well-being. McMaster Toronto Arthritis patient preference questionnaire. d Shoulder Function Assessment (n ¼ 42). e Timed-stands test (n ¼ 42). b c
administration, to ensure that patients would still be in a stable disease phase when entering the study. Eighteen declined participation for reasons such as lack of time, stressful work situation or vacation. The DAS28 disease activity measure was not used with four patients, who were also excluded. Two patients were excluded due to logistic problems and three did not respond to the invitation. Thus, 45 patients participated, 33 women and 12 men, with a median (md) age of 59 lower and upper quartiles (Q1–Q3) of 52–65 years and a mean DAS28-score of 3.50 (SD 1.45). For demographic and descriptive data, see Table 2. Assessments One part of the McMaster Toronto Arthritis patient-preference disability questionnarie (MACTAR) concerns the disabilities prioritized by the patients, and the other how different aspects of health are affected by the rheumatic disease: global health, physical function, social function, and emotional function [5,11]. In the latter part of the interview the patient is asked to identify all disabilities related to his or her rheumatic disease. The interviewer helps with examples of areas, e.g. domestic, personal hygiene, work, outdoor activities, social activities, sexuality, sleep, and relations to family, partners and children. The disabilities identified are then ranked by the patient as to importance of improvement. The five highest-ranked disabilities are recorded. In the Verhoeven 2000 version of the MACTAR, an unweighted scoring system is used generating scores 19–39 where 39 indicates no disability [5]. A weighted scoring system can also be used, as in the present study, with scores thus varying from 39–59 where 59 indicates no disability. The prioritized disability part is scored 10 for the highest ranked activity, 8 for the next highest, down to 2 for the lowest of the five. Global health is scored on a 3-point scale, while questions on physical, social and emotional function are scored on a 5-point scale. The DAS28 was used to describe disease activity. It contains scores for number of swollen and tender joints, erythrocyte
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sedimentation rate (ESR), C-reactive protein (CRP) and patient’s rating of general health on a visual analogue scale (VAS), 0–100. The DAS28 score varies between 0 and 10, 0 indicating low disease activity [28]. The timed-stands test (TST) was used to assess lowerextremity muscle function. It is scored as the time in seconds required to stand up and sit down ten times from and on a 45-cm-high chair [29]. The Shoulder Function Assessment (SFA) assesses upper-extremity function including five functional tasks; handto-ceiling, hand-to-opposite-shoulder, hand-to-neck, hand-to-back and hand-to-sacrum [30]. Each task is scored on a six-grade scale from 1 to 6. Total score varies from 10 to 60, where 60 indicates normal function. In addition the VAS, 0–100 is used to assess subjective pain during performance of each task. Total score for the VAS varies between 0 and 100, where 0 indicates no pain. The VAS, 0–100, was also used to assess overall pain, 0 indicating no pain [31]. The HAQ is a questionnaire widely used to assess activity limitation in RA [3,32]. Its 20 activities are divided into eight categories: dressing and grooming, rising, eating and preparing meals, walking, personal hygiene, reach, grip, and other activities. Total score varies from 0 to 3, where 0 indicates no limitation. The global assessment of patients’ well-being (PGA) was assessed on a VAS, 0–100, 0 indicating good well-being [28]. Study procedures The DAS28 was administered by a rheumatologist during a regular scheduled appointment. During this visit the rheumatologist also determined if the patients had stable disease activity and medication (unchanged disease activity according to the DAS28 and unchanged medication the past 3 months). At the first physical therapy appointment the MACTAR, HAQ, TST, SFA, PGA and pain ratings were performed. Eight patients did not return for a second appointment, for logistic reasons; thus 37 (27 women, 10 men, age md 59 (Q1–Q3 52– 65) years, disease duration md 10 (Q1–Q3 4–21) years) were included to perform the MACTAR once again one week later. Test and retests were performed by the same of either two experienced physical therapists at the Department of Physiotherapy at Danderyd hospital, Stockholm. Before including patients, the two physical therapists did two MACTAR interviews each in clinical practice to familiarize themselves with the measure. Analysis and statistics As the MACTAR produces ordinal data, descriptive data are presented as median values (md) and lower and upper quartiles (Q1–Q3). The prioritized disabilities of the MACTAR were presented and compared descriptively with the items in the comprehensive ICF core set for RA and HAQ and categorized using the ICF Browser [33]. Spearman’s correlation coefficient (rs) was used to analyze correlations between the MACTAR score and other measures. Correlation coefficients rs 0.90–1.0 were concidered as very high, rs 0.70–0.89 as high, rs 0.50–0.69 as moderate, rs 0.26–0.49 as low and rs 0.00–0.25 as very low or no correlation [34]. For analysis of random variations between test and retest, weighted coefficient (Kw) was used. Weighted coefficients were interpreted as; Kw 0.81–1.0 very good, Kw 0.61–0.80 good, Kw 0.41–0.60 moderate, Kw 0.21–0.40 fairly poor and Kw520 very poor [35]. For analysis of systematic variation between test and retest, the sign test was used, a level set to p40.05. Descriptive analysis of concordance and analysis of identified
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disabilities and their ranking in the first and second MACTAR interview were used. Ethics and consent The study was approved by the regional ethics committee in Stockholm (dnr. 2005/1518-31/2) and all patients signed informed consent forms.
Results Patients’ preference comparison to ICF core set for RA and HAQ, and ICF categorization The most commonly identified disabilities the patients found important to improve were; fatigue in relation to social activities (n ¼ 26), walking/hiking (n ¼ 21), sleep (n ¼ 19), heavy lifting (n ¼ 15), cooking (n ¼ 15), and gardening (n ¼ 15) (Table 3). A total of 58 disabilities were identified. Seventeen disabilities were identified by at least 5 patients and of these, 47% were represented in items of the Comprehensive ICF core set for RA and 53% were represented in the items of HAQ (Table 3). Of the most frequently identified disabilities (n ¼ 17), 1 was categorized in the ICF Body Functions and Structures component and 16 in the Activities and Participation component (Table 3). Correlations between the MACTAR and other measures Spearman correlations between the MACTAR and other measures revealed moderate correlations with the DAS28 (rs 0.65), pain (rs 0.61), PGA (rs 0.61) and with the HAQ (rs 0.51), low correlation with the SFA (rs 0.38) and very low correlation with the TST (rs 0.19). Test–retest reliability The weighted coefficient of the MACTAR total score at the first and second assessments was Kw 0.59 (moderate reliability) with no systematic differences (sign test, p ¼ 0.22). 36% of the identified disabilities and rankings were identical at the first and second MACTAR assessments, 23% were ranked one level higher or lower at second assessment and the remaining activities (41%) were ranked two or more levels higher or lower at the second assessment, or not identified at all at the first assessment (Table 4).
Discussion This is the first study to use the MACTAR to investigate the disabilities patients with RA in Sweden most wish to improve. The three disabilities rated as most important were fatigue in relation to social life, walking and sleep. Half of the identified disabilities are not included in the comprehensive ICF core set for RA or in the HAQ. The MACTAR score correlated moderately to measures of disease activity, pain, patients’ global assessment of well-being and activity limitations, while there were lower correlations to measures of body function. All except one of the identified disabilities were categorized in the ICF Activities and Participation component. Moderate test–retest reliability for the MACTAR score, and a moderate agreement of identified disabilities and their ranking between the first and the second assessments were revealed. Fatigue was also found important to evaluate according to the patient-perspective workshop at OMERACT 7 [26], while the OMERACT 8 workshop recommended that fatigue should be measured in all studies of RA [36]. In the Dutch validation of the MACTAR, the most frequently-identified disabilities were moving around (23%), i.e. bicycling, driving, walking and stairclimbing, while fatigue and sleep were only identified by 1% of
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Table 3. Disabilities identified by at least five patients with RA of total 45 using the MACTAR, comparison of identified disabilities and predefined items in the ICF core set for RA and the HAQ, and categorization of identified disabilities using the ICF. Disabilities identified using the MACTARa
ICF-score set RAb
Men/women
Fatigue in relation to social life (n ¼ 26) Walking/hiking (n ¼ 21) Sleep (n ¼ 19) Heavy lifting (n ¼ 15) Gardening (n ¼ 15) Cooking (n ¼ 15) Cleaning/vacuuming (n ¼ 14) Personal care (n ¼ 14) Get dressed (n ¼ 11) Gymnastics/aerobics (n ¼ 10) Sexual activity (n ¼ 9) Bicycling (n ¼ 8) Stair climbing (n ¼ 8) Sewing/knitting (n ¼ 6) Employment (n ¼ 5) Get in and out of a car (n ¼ 5) Twist open can (n ¼ 5)
6/20 4/17 4/15 2/13 3/12 4/11 2/12 5/9 5/6 1/9 5/4 1/7 4/4 0/6 1/4 2/3 2/3
NR Included Included Included NR Included NR Included Included NR NR NR NR NR Included Included NR
HAQc
ICF level and code
NR Included NR Included NR Included Included Included Included NR NR NR Included NR NR Included Included
Activity/participation (d 9205) Activity/Participation (d 450) Body functions (b 134) Activity/Participation (d 430) Activity/Participation (d 6505) Activity/Participation (d 630) Activity/Participation (d 6403) Activity/Participation (d 510) Activity/Participation (d 540) Activity/Participation (d 9201) Activity/Participation (d 7702) Activity/Participation (d 4750) Activity/Participation (d 4551) Activity/Participation (d 9203) Activity/Participation (d 850) Activity/Participation (d 410) Activity/Participation (d 550)
Included ¼ Identified disability is also included as an item in the ICF core set for RA or the HAQ, NR ¼ Identified disability is only partly or not at all included as an item in the ICF core set for RA or the HAQ. a McMaster Toronto Arthritis patient preference questionnarie. b International classification of functioning, disability and health core set for reumatoid arthritis, comprehensive version. c Stanford Health Assessment Questionnaire Disability Index.
Table 4. Concordance of the top five prioritized activities and their ranking at first and second MACTAR assessment (n ¼ 37). MACTAR first assessment 1 MACTAR second assessment 1 2 3 4 5 Activity not mentioned at first assessment
24 4 3 2 1 3
2
3
4
5
8 14 4 2 1 8
3 6 8 7 1 12
0 2 6 12 6 11
0 2 3 1 9 22
the patients [5]. Our results are in line with the Dutch study regarding disabilities related to mobility but diverge when identifying fatigue and sleep. Sleep was identified at the OMERACT 6 workshop as an outcome important to patients [37] and in the OMERACT 9 workshop sleep disturbances in inflammatory arthritis was a main focus and recommended for evaluation [38]. Interestingly, we were able to capture these important outcomes using the patient preference MACTAR. The diversity of identified disabilities (n ¼ 58) among arthritis patients has been described previously [39] and supports the need for patient preference assessment and self-selected items. The number of patients included in this study was limited and most patients had low disease activity which hampers our ability to generalize the identified disabilities to individuals of all ages and various disease activity of RA. The HAQ index which does not include fatigue and sleep items, contained only 53% of the most frequently identified disabilities using the MACTAR. A limited concordance was also seen in the Dutch study reporting that 48% of frequentlyidentified disabilities were represented by items in the HAQ [5]. These differences in concordance might be due to several factors. The HAQ was developed in the 1980s and the demands on patients’ daily life might have changed with time. Fatigue in social activities was among the most important disabilities to improve in
our study, but this disability was not included in the RA core set or the HAQ. The other disabilities most important to improve – walking/hiking, sleep, heavy lifting and gardening – are all included in the RA core set, while sleep is also not represented in the HAQ. Sexual activity was identified as important to improve, yet outcomes with predefined items frequently used in patients with RA contain no questions about sexual activity. In addition, using the MACTAR, sexual activity was the disability most deemed in need of improvement in patients with chronic polymyositis and dermatomyositis [11]. These results indicate that sexual activity is an important part of life affected by rheumatic disease. It might be easier to talk about limitations in sexual activity in an interview than answering closed questions in a questionnaire. The MACTAR may assess disabilities not covered by traditional outcomes, and these tallies with studies stating that predefined outcome questionnaires might not cover all activities highly prioritized by patients while some of the activities included might be irrelevant for some patients [23]. The most commonly identified disabilities important to improve were largely represented in the ICF component Activity/Participation, while only one was included in the body functions and structures component. Note that this diverges from what consensus outcomes assess. According to a recent study, the majority of the the most common clinical outcome measures used in rehabilitation of arthritis patients assess the ICF component Body functions [40]. This supports the importance of the additional use of a patient preference measure. Rehabilitation tailored towards patient led priorities might result in improved outcomes and patient satisfaction. But it might need interventions using skills from a wider multidisciplinary team. The MACTAR correlated best to measures of disease activity, pain and patients’ global assessment of disease effect on wellbeing. The Dutch MACTAR correlated well to disease activity [5], which was also the case with the HAQ [41]. However, this apparently differs from studies of polymyositis and dermatomyositis where the MACTAR and the Myositis Activities Profile (MAP) revealed low correlations to measures of disease activity [11,42]. One explanation could be that pain is a major complaint in RA, perhaps closely related to tender and swollen joints. On the other hand it is not a classic symptom in myositis, where a
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discrepancy has been established regarding degree of muscle inflammation and degree of muscle impairment and activity limitation [43–45]. Although the correlations were moderate between the MACTAR and measures of disease activity, pain and activity limitation it probably adds new information on disease impact important to individual patients. It can thus be a valuable complement to traditional outcome measures both in clinical practice and in research. The low correlations to the impairment measures SFA and TST could be due to that they are tests of functional capacity while the MACTAR evaluates performance. There was moderate test–retest reliability over one week of the MACTAR score which is in concordance with the validation of the MACTAR in myositis patients, while the Dutch MACTAR has still not been validated regarding test–retest reliability. However, there might be a seasonal variation in priorities of disabilities [6] and this has been confirmed by a French study in patients with systemic sclerosis [46,47]. For example, gardening, which was highly prioritized in our study, would probably not be so prioritized if the study had been conducted during winter time. Since activities of daily living vary with seasons and disease status, one possible limitation of the MACTAR could be that disabilities lose relevance during a longer follow-up period. The change over one week in priority ranking of the disabilities indicates that the use of unweighted scores is more relevant then weighted scores. Most patients with RA experience day-to-day variation of some degree and it cannot be ruled out that the patients participating in this study experienced positive effects of ongoing exercise. However, a 1-week period is not enough to experience significant effects of exercise. Possible subjects were probably lost because this study was conducted during the spring and summer: vacations were one frequent reason for not coming to the clinic. Another possible influence on the results is that patients with RA often feel better during the summertime than in the cold winter and typical winter activities such as skiing were not up for assessment. No patients with recent onset or very active disease were included, which might also have influenced the results. However, participating patients varied in gender, age, diagnosis duration, and pain, supporting the external validity of the study. The exclusion criterion disease duration less than six months was intended to avoid the risk of patients going through crisis reactions during the diagnosis period, when they might not have accepted that they had a chronic disease.
Conclusion The MACTAR identified fatigue in relation to social activities, walking, and sleep, as the three disabilities patients with RA in Sweden most wished to improve. The MACTAR has moderate testretest reliability and could be useful for assessing disabilities important to the patient but not covered in recommended RA outcome measures. A use of MACTAR in addition to traditional measures could improve not only assessment and evaluation of interventions but also the understanding of what the individual prioritizes and thus better target the rehabilitation of patients with RA.
Declaration of interest This work was financially supported by the Center for Health Care Science, Karolinska Institutet, Stockholm, Sweden. The authors declare no conflicts of interests. The authors alone are responsible for the content and writing of this article.
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