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Rheumatology Advance Access originally published online on December 13, 2006
Rheumatology 2007 46(4):703-708; doi:10.1093/rheumatology/kel394
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© The Author 2006. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Development and validation of a patient-centred Measure of Activity Limitation (MAL) in rheumatoid arthritis

L. Goodacre, J. Smith, D. Meddis1 and J. Goodacre

Interdisciplinary Research and Teaching Group for Chronic Disease and Rehabilitation, University of Central Lancashire, Preston and 1Health Economics and Outcomes Research, AstraZeneca, Macclesfield, UK.

Correspondence to: Dr Lynne Goodacre, PhD, Lancashire School of Health and Postgraduate Medicine, University of Central Lancashire, Preston, PR1 2HE UK. E-mail: lgoodacre{at}uclan.ac.uk


   Abstract
Top
 Abstract
Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 
Objective. This study sought to understand patients’ experiences of activity limitation in rheumatoid arthritis (RA) to inform the development and preliminary validation of a new patient-centred assessment tool.

Methods. Interviews, focus groups and diaries provided insight into patients’ experiences of change in activity limitation. These data informed item generation for the Measure of Activity Limitation (MAL) questionnaire. Postal surveys, comprising the MAL, Short Form 36 (SF36) and Health Assessment Questionnaire (HAQ), were used to inform item reduction and assess the MAL's validity, reliability and sensitivity.

Results. Qualitative exploration of activity limitation with 30 patients led to the development of a 36-item questionnaire addressing the impact of symptoms on activity, difficulty in global function and difficulty in task performance. Analysis of data from a postal survey of 168 patients led to the development of a 19-item questionnaire which demonstrated moderate correlations with the HAQ and relevant scales of the SF36. A second postal questionnaire, completed on two occasions by 308 patients, assessed test–retest reliability. One hundred and ninety-three people reporting no change in disease showed mean change in MAL score between the two completions of 0.41 [95% confidence interval (CI) –0.38 –1.22)], demonstrating test–retest reliability. Thirty-two patients reporting improvement showed a mean change of –7.84 (95% CI –11.15 to –4.54) and 83 reporting deterioration showed mean change of 4.63 (95% CI 3.09–6.16), suggesting that the MAL is sensitive to self-reported clinical change.

Conclusion. Our results suggest that the MAL is valid, reliable and sensitive to self-reported change. The MAL may provide a useful patient-centred adjunct to existing measures of activity limitation.

KEY WORDS: Activity limitation, Rheumatoid arthritis, Outcome measurement


   Introduction
Top
 Abstract
 Introduction
Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 
The need for tools to measure activity limitation in patients with rheumatoid arthritis (RA) is widely recognized [1, 2]. Within the Classification of Functioning, Disability and Health, activity limitation is defined as the ‘difficulties an individual may have in executing activities’ [3]. In RA, the most widely used self-administered questionnaires to assess activity limitation are the Disability Index of the Stanford Health Assessment Questionnaire (HAQ) [4] and the Arthritis Impact Measurement Scale [5]. Both questionnaires utilize pre-defined lists of activities against which respondents indicate the degree of difficulty experienced when executing the task. A renowned body of literature has been built up using such questionnaires [6–8] and they now form part of the core data set required by OMERACT for inclusion in clinical trials [9].

However, a number of potential limitations, inherent in using tools based on pre-defined activities, have been identified. Studies using problem-elicitation techniques or patient-preferencing have shown that patients often highlight areas not contained within pre-defined lists [10], and scores are attributed equally across items implying that different activities are equable in terms of representing activity limitation [11]. Furthermore, activities are commonly detached from their wider social context and may therefore lose their personal and social significance [11], whilst activity limitation is commonly represented as non-gendered with all activities being regarded as of relevance to both men and women. Several studies have highlighted disagreement between health professionals and patients regarding the importance of dimensions commonly incorporated into existing functional and health status assessments [12–15].

A major challenge therefore is to develop measures of activity limitation which faithfully represent patients’ experiences, have applications both in research and clinical practice, and which have proven validity and reliability. This study sought to gain an understanding of patients’ experiences and perceptions of activity limitation. The aims were to identify potential indicators of change and to develop a new patient-centred assessment tool, the Measure of Activity Limitation (MAL), informed by these indicators.


   Patients and methods
Top
 Abstract
 Introduction
 Patients and methods
Results
 Discussion
 Acknowledgements
 References
 
The study comprized three phases, namely item generation, exploration of internal consistency and construct validity, and exploration of test–retest reliability (Table 1). NHS ethical committee approval was gained, and patients’ written consent was obtained according to the Declaration of Helsinki for all phases of the project. The Departments of Rheumatology in Blackpool Victoria Hospital (BVH), Royal Preston Hospital (RPH), Wrightington Hospital (W), Burnley General Hospital (BGH) and University Hospital Aintree (UHA) participated in the study.


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  		TABLE 1. Stages of development of the MAL; methods used in each phase of the study

 
Phase 1: item generation
A qualitative methodology was used to gain an understanding of experiences and perceptions of activity limitation following commencement of disease-modifying therapy, and to identify potential indicators of change. This enabled the collection both of prospective data during a period when clinical change was likely to occur and retrospective data relating to previous experiences.

Participants were recruited from the out-patient departments of BVH, W and RPH. Purposive sampling was used to ensure key characteristics likely to impact on participants’ experiences [16], such as age, sex, disease duration, experience of use of disease-modifying anti-rheumatic drugs (DMARDs), social situation and employment status. Data were collected over 9 months using semi-structured interviews and activity diaries. Initial interviews, conducted within 3 weeks of DMARD commencement, obtained data on participants’ experiences of RA, their previous treatments and the impact of their impairment on their lifestyle and activities. Participants then completed a structured 7-day activity diary with half-hourly time slots recording the activities in which they engaged, the personal importance of each activity, and rating the quality of their sleep, length of morning stiffness and levels of fatigue and pain for each day. They completed an HAQ [6] at the end of the week. The HAQ assesses fundamental activities of daily living (ADL) and more complex instrumental activities of daily living (IADL). The range is 0–3, with 3 indicating a high degree of disability. The diary informed a subsequent interview exploring how change in disease status was reflected by engagement in activities. Completion of a second diary and interview was conducted 3 months later to explore interim changes. All interviews were recorded, took place in participants’ homes and lasted between 1 and 2 hours. Participants were then allocated to one of three focus groups, each of which met twice. Three groups, comprising 9 or 10 participants, were convened to ensure that the groups were large enough to facilitate group interaction and discussion, whilst providing an opportunity for the active participation of all members. The first meeting explored participants’ views on the main themes emerging from the data analysis, and the second meeting focused on the development of potential items for the questionnaire. The use of multiple methods provided different perspectives of participants’ experiences enhancing the richness and depth of data [17].

The interviews and focus groups were recorded and transcribed. Transcripts were checked for accuracy against the tapes. A constant comparative approach to analysis, consistent with a grounded theory approach [18], was adopted. Data management was facilitated by the use of ATLASti. Analyses of the interviews was undertaken first to inform the questions to be explored within the focus groups.

Phase 2: exploration of internal consistency and criterion validity
Face and content validity were assessed in two clinical sites (RPH and BGH). In face-to-face interviews, participants completed the questionnaire and discussed their understanding of the questions, ease of completion and areas of omission. Internal consistency and criterion validity were assessed via a postal survey comprising the MAL, the HAQ [6] and the Short Form 36 (SF36) [19]. The SF36 measures health across three domains: functional status, well-being and overall evaluation of health, using eight separate scales.

The postal survey was conducted in two clinical sites (BGH and W). In BGH, consecutive patients with RA attending an out-patient clinic were given information about the study and a consent form. In W, an information sheet and a consent form were posted to patients listed on a departmental database. Everyone returning a consent form was sent a copy of the questionnaire and prepaid envelope. Descriptive statistics were produced for all items in the MAL to enable inspection of response range and missing responses. Inter-item correlations were used to explore any potential duplication. Principal components and factor analysis, using varimax rotation, were used to explore the structure of the items. The internal consistency of the scale was assessed by calculating the Cronbach's {alpha} coefficient, which provides an overall estimate of the correlation between the items of the scale. Guttman split-half reliability was calculated to determine the internal reliability. Construct validity was assessed by Pearson's moment correlations of the activity limitation scale of the MAL with the HAQ and SF36. All statistical analyses were performed using SPSS statistical package version 13.1.

Phase 3: test–retest reliability and sensitivity to self-reported change
Test–retest reliability was assessed via postal survey in one clinical site (UHA). All patients with a diagnosis of RA, entered on the department database, were sent an information sheet and invited to participate in the study. Participants returning a signed consent form were posted the MAL, the HAQ and the SF36. A second set of questionnaires was sent 2 weeks after the return of the first. Test–retest reliability was determined by calculating differences in scores between two administrations of the questionnaire in patients reporting no change in their condition over the 2-week period. Paired sample T-tests were used to calculate the average within-subject differences and a 95% confidence interval (CI). Intra-class correlation coefficients were calculated to check agreement.

Data derived from patients reporting change over the 2-week period were used to conduct a preliminary exploration of the ability of the MAL to reflect improvement and deterioration.


   Results
Top
 Abstract
 Introduction
 Patients and methods
 Results
Discussion
 Acknowledgements
 References
 
Phase 1: item generation
Thirty participants were recruited, but one withdrew after the first interview. Mean age was 54 yrs (S.D. 12.3, range 28–72), 22 were women, mean disease duration was 4.6 yrs (S.D. 5.1, range 0.5–16) and mean HAQ score was 1.4 (S.D. 0.71, range 0.3–2.5). Thirteen participants were commencing DMARD therapy for the first time.

Key factors identified as affecting levels of activity limitation were levels of pain, fatigue, stiffness and sleep disturbance. An additional factor identified by some participants was the impact of side effects of medication, and methotrexate was identified frequently as influencing levels of activity either on the day it was taken or on the following day.

Participants described change in activity both in terms of their ability to undertake specific activities and in terms of difficulty experienced in aspects of task performance. Regarding the former, the diaries illustrated the diversity of activities in which participants engaged and the individual ways in which self-assessed change in disease status was reflected by the specific activities undertaken. Improvement during the period of data collection was reflected by return to work, engagement in a wider range of social activities, re-engagement in sporting activities, increase in voluntary work and, for one person, taking up a new business opportunity.

Exploration of the personal importance attached to specific activities suggested that this was assessed within the overall context of other activities undertaken on a given day, personal values and priorities, and a range of social factors including age, gender, the availability of assistance and the demands of family life. Whilst some areas of activity were common to all participants, primarily in relation to fundamental activities of daily living, many were unique in their relevance and importance.

The term ‘difficulty’ was used frequently during the interviews and as the fieldwork progressed was explored in greater depth. Several characteristics relating to the way in which activities were performed were associated with this term, e.g. the ability to concentrate, the amount of time spent in activity, the level of assistance required and the amount of time taken to complete an activity. Whilst the activities to which people applied the term were often person-specific, the characteristics were relevant more widely and appeared to offer a potential approach towards measuring change in activity limitation.

Focus groups explored participants’ views on assessing activity limitation and potential content of a questionnaire. Exploration of views on developing a list of specific activities led to lengthy discussions and a consensus that this would be difficult to achieve in a way which captured activities of relevance to everyone. It was suggested that a focus on global areas of function may be more appropriate. Twelve areas of global function were identified (Table 2), of which five were acknowledged by participants as important, although not necessarily relevant to everyone, namely: paid employment, caring for others, hobbies, personal and sexual relationships, and voluntary work. It was decided, at this stage, to include all 12 global areas in the initial questionnaire but to provide an additional response option of ‘does not apply’ to explore their relevance in a larger population. The groups confirmed the specific characteristics associated with the concept of difficulty and the relevance of questions relating to pain, fatigue, stiffness, sleep and medication. A 2-week time frame was identified by the groups as a meaningful period within which to frame the questions. We explored with the groups the number of response options for each question that participants felt would enable them to represent changes in their levels of activity. It was felt that five options would provide satisfactory opportunities to express different levels of change.


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  		TABLE 2. The 12 areas of global function identified by the focus groups, with examples of some of the activities associated with each area

 
This led to the development of a MAL questionnaire comprising 36 items, relating to symptoms and their interference with daily activities, the level of difficulty experienced in areas of global function and items relating to difficulty in task performance, e.g. whether it has taken longer to do things, whether more assistance has been needed, whether the amount of time in which activities can be engaged in is more limited.

To assess face and content validity of the MAL, consecutive patients with RA attending out-patient clinics at RPH completed the questionnaire in the presence of one of the research team. Twenty-five patients (21 females) participated, with an age range of 27–77 yrs and disease duration of 1–30 yrs. No questions were omitted and no one identified significant problems of comprehension although some minor changes were suggested to the phrasing on some questions to improve understanding. No areas of omission were identified.

Phase 2: internal consistency and criterion validity
Three hundred and twenty patients were contacted from two clinical sites (BGH and W), of whom 168 (124 female) agreed to participate. Their mean age was 59.4 yrs (S.D. 11.6, range 24–84), mean disease duration 13.1 yrs (S.D. 11.1, range 6 months–59 yrs) and mean HAQ score 1.8 (S.D. 0.74, range 0–3).

All items were examined with regard to missing data and response range. Of the 12 items assessing global areas of activity, two demonstrated highly skewed response ranges due to the majority of respondents indicating that they were either unable to do the task or experienced no difficulties. Four items were marked by over 45% of respondents as being not applicable (Table 3). These factors indicated removal of these six items from the pool. However, the potential removal of these items led to concerns relating to ability of the remaining items to reflect adequately people's global areas of functions. As the intention of the study was to develop a questionnaire informed by participants’ perceptions of change, interviews were conducted with nine more patients to explore this issue. These interviews reflected the consensus of the previous focus groups and of the research team that all or none of the areas should be included. It was decided therefore to focus on items reflecting difficulty in task performance rather than difficulty with areas of global function.


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  		TABLE 3. Global areas of function

 
For the remaining 24 items, responses were normally distributed. In considering these items for areas of potential redundancy, four questions relating to sleep were highly correlated and were reduced to one question assessing quality of sleep. Two questions, relating to mood, irritability and depression, were removed as they were considered to be insufficiently specific to the issue of activity limitation. This reduced the number of potential items to 19, 15 of which focused on aspects of difficulty in task performance and impact of symptoms on task performance, and one each on severity of pain, severity of fatigue, quality of sleep and impact of medication on activity. Factor analysis conducted on the items relating to task performance and the impact of symptoms of task performance identified a single factor structure (Table 4) with an eigenvalue of 9.94, accounting for 66% of the variance. The Cronbach's {alpha} value for the scale was 0.96 with a Guttman split-half reliability of 0.92 for part 1 and 0.94 for part 2, suggesting that the scale is homogenous.


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  		TABLE 4. Factor analysis of items of the MAL addressing task performance

 
The resulting scale has 15 items. Each item has five response options scored from 1 to 5 with 1 representing the least degree of activity limitation and 5 the highest. Examples are shown in Table 5. The scale had a minimum score of 15 and a maximum score of 75 with higher levels of activity limitation indicated by a higher score. The construct validity of the scale was confirmed by demonstrating moderate correlations with the HAQ (r = 0.73) and the physical function scale of the SF36 (r = –0.74).


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  		TABLE 5. Examples of questions and responses options for items in the MAL

 
The individual questions relating to pain, fatigue and sleep, each with a minimum score of 1 and a maximum score of 5, also demonstrated moderate correlations with the bodily pain and vitality scales of the SF36 (Table 6). Neither the HAQ nor the SF36 assesses the impact of medication on activity limitation, and the criterion validity of this item was not explored.


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  		TABLE 6. Levels of correlation between individual questions in MAL and relevant scales on the SF36 in phase 2 of the study

 
Phase 3: test–retest reliability and sensitivity to self-reported change
Nine hundred and seven people were contacted, of whom 443 agreed to participate (48.8%). Of these, 386 participants returned the first questionnaire and 308 completed both questionnaires. Of the people completing both questionnaires 237 (70%) were female, mean age was 62.5 yrs (S.D. 10.42, range 31–88), mean disease duration 14.4 yrs (S.D. 10.8, range 1–59) and mean HAQ score 1.7 (S.D. 0.75, range 0–3).

One hundred and ninety-three people reported no change in disease over the 2-week period and these data were used to explore test–retest reliability. Within this subgroup, the intra-class correlation was 0.95, and mean change in score between the two completions was 0.41 (95% CI –0.38 to 1.22). During this time, 4 patients reported their condition as ‘much better’ and 28 as ‘somewhat better’. These two data sets were combined to explore sensitivity to improvement. The mean change between the two completions was –7.84 (95% CI –11.15 to –4.54), suggesting the MAL is sensitive to self-reported improvement. Seventy people reported their RA as ‘somewhat worse’ over the 2 weeks and 13 as ‘much worse’. By combining these two data sets, the mean change between the two completions was 4.63 (95% CI 3.09–6.16), suggesting that the MAL is sensitive to self-reported clinical deterioration.


   Discussion
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
Acknowledgements
 References
 
This study sought to gain an understanding of patients’ experiences and perceptions of changes in levels of activity to inform the development and preliminary validation of the MAL in RA. The qualitative data provided insights into how patients describe the impact of RA on their activity not only in terms of their ability to complete specific activities but also in terms of the impact of RA on how an activity is performed.

Our results confirmed the acknowledged difficulties of identifying lists of activities relevant to all individuals within groups of patients [20]. The inclusion of items with no relevance to respondents may introduce bias into scores, whilst the omission of relevant areas may reduce the measure's sensitivity to change and ability to discriminate [21, 22]. In phase 1 of our study, the range of activities highlighted in the activity diaries was extensive and often individually unique. Whilst participants recognized the rationale for identifying a pre-defined list of activities, they were nevertheless firm in their conviction that items such as employment, caring roles and sexual and personal relationships should be included. Such activities are not commonly represented in functional assessment tools, having either been removed to strengthen the psychometric properties of questionnaires [4], or not scored within the relevant scale [5]. In seeking to ensure that pre-defined activity lists include activities which are important to as many patients as possible, patients have been asked in other studies to rate the importance of different activities in order to ensure that highly valued activities are represented in measures [23]. Fundamental to this approach is the assumption that the value attached to activities remains constant over time. However, our data suggested not only that the value of activities varies from person to person, but also that individuals value activities differently at different times. This is supported by other findings [24] and has been explored previously in relation to how expectations change over the course of an illness trajectory [25]. Attempts have been made to develop patient-generated indices, e.g. the MACTAR [26], the Canadian Occupational Performance Model [27] and the Disease Repercussions Profile [20], that enable patients to identify specific activities. Patient-generated items are inserted each time the questionnaire is administered, an approach which raises methodological issues about how potential changes in items generated between administrations can be accommodated. Whilst the value of these assessment tools has been widely acknowledged, their limitations include the length of time taken for completion, the requirement for a trained interviewer, their limited application in clinical trials [28] and the lack of comparability and construct validity when data are aggregated [29]. It has been suggested that the pragmatic requirement for usability may limit the use of such tools [13] in research settings. Therefore, there continues to be a need to explore other approaches towards developing tools which satisfy requirements both for relevance and usability.

A major methodological issue inherent in using patient-centred approaches concerns the question of how to retain the qualities both of patient perspectives and psychometric robustness within the same tool. In our study, this issue arose in relation to areas of global function. Initial validations identified some items of global function with limited relevance to a large proportion of respondents, as well as some items demonstrating highly skewed responses which, if included in the questionnaire, would have detracted from its psychometric properties. In addressing this issue, we considered whether removal of 12 global items and retention of items focusing on ‘difficulty’ in performing activities provided a valid alternative approach. This was explored with another cohort of patients in order to maintain patient involvement throughout the process and was supported by subsequent data analysis. This led us to focus on items reflecting ‘difficulty’ in task performance rather than areas of global function, and enabled us to sustain a patient-centred approach.

Insights provided from our data into the concept of ‘difficulty’ appeared to provide a useful approach to capturing change in activity limitation. The concept of ‘difficulty’ is integral to discourse relating to activity limitation, since clinicians commonly ask about areas of difficulty whilst patients often describe tasks as being ‘difficult’. Within the framework of the International Classification of Functioning, Disability and Health, the performance and capacity qualifiers for activity limitation represent ‘difficulty’ as a graded phenomenon, with five intervals ranging from ‘no difficulty’ to ‘complete difficulty’ [3]. Similarly, the HAQ [4] represents ‘difficulty’ as a graded phenomenon (with four intervals ranging from ‘without any difficulty’ to ‘unable to do’). The RA Quality of Life tool [27] includes several questions asking respondents to indicate whether or not they find specific tasks difficult, e.g. ‘I find it difficult to take care of people’, and ‘I have difficulty dressing’. However, whilst ‘difficulty’ is central to discourse and measurement, there is a paucity of empirical work to operationalize this concept. A general criticism of approaches used in outcome measurement has been the emphasis on the technical development of measuring concepts rather than on developing a theoretical understanding of the dimensions being assessed [30]. Our results suggest that the development of measurement tools which focus upon ‘difficulty’ may enable patients to reflect more satisfactorily their experience of activity limitation.

The identification of pain, fatigue, stiffness and disturbed sleep within our study as major determinants of activity limitation is consistent with findings from other work. The dimensions of fatigue and disturbed sleep were identified by patients participating in OMERACT 6 workshop as not being captured or given adequate weight in existing measures [31]. The level of disruption and distress caused by fatigue has also been highlighted as having a significant impact on the lives of people with RA [32]. Our study also highlighted a link between medication and activity limitation, consistent with other work, suggesting that appraisal of the positive and negative consequences of treatment is an important component of patients’ medication-related decisions and experiences [33]. This issue was identified in the diaries of some patients participating in the qualitative work regarding observations that on some days more time was spent resting or in bed. When this was explored in the interviews, medication was identified as the main reason for this change in level of activity. This was confirmed by some (but not all) of the participants in the focus groups. The inclusion of this item acknowledges that in some instances, medication may have detrimental effects on a patient's sense of well being and activity, and addresses an aspect of interventions that is not addressed by other available measures. This issue may be particularly applicable in the context of clinical trials. Whilst the face validity of this item has been established, we were unable to assess its construct validity due to its omission from other measures. As this item is scored as a single item and not included in the scale score, the lack of validation will not affect the overall validity of the scale. However, further validation of this item needs to be undertaken.

To ensure that the MAL would reflect a very broad range of RA patient perspectives, we involved five UK centres and over 600 patients in the development, modification and testing of the questionnaire. It is therefore likely that the MAL would be generalizable to other UK centres. In phase 3 of our study, 337 patients completed the questionnaire on two occasions, 2 weeks apart. Of these, 193 people reported no change in their disease status over this time, whilst 32 reported improvement and 83 reported deterioration. The groups reporting improvement and deterioration respectively showed mean increases and decreases in MAL scores. These early findings suggest that the MAL is sensitive to self-reported change in disease status. Further work is needed to explore the sensitivity of the MAL in both clinical and research settings.

There continues to be a need for a range of tools to reflect the different purposes of assessment in RA. In clinical assessment, the paramount need is to identify specific problems and to inform interventions, and, in such instances, assessments that focus on specific activities are most useful. In contrast, in evaluating interventions and in clinical monitoring, the main need is to identify and measure change. In each of these situations, a measure of activity limitation which focuses on components of difficulty may overcome some of the limitations associated with the use of pre-defined activities. Our results suggest that the MAL has strong potential as such an assessment tool and show that it is capable of measuring self-reported change. Depending on the results of further studies, the MAL may prove to be a useful adjunct to existing measures by providing an alternative to the existing focus on pre-defined activities, an approach which may have limited relevance to individual patients.

Formula


   Acknowledgements
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
References
 
We acknowledge all of the patients who participated in this study, and thank Dr I. Stewart, Dr S. Jones, Dr M. Burke, Prof. R. Moots, Dr R. Thompson, Dr C. Chattopadhyay, Dr D. Grennan and Dr D. Swinson for allowing us to study patients attending their clinics, Ms A. Hart for statistical advice and Dr K. McDonald for help in preparing the manuscript. This project was funded by a research grant from AstraZeneca.

The authors have declared no conflicts of interest.


   References
Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 Acknowledgements
 References
 

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Submitted 15 May 2006; revised version accepted 25 October 2006.
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