University of Groningen
Clinical and spinal radiographic outcome in axial spondyloarthritis
Maas, Fiona
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Publication date: 2017
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Maas, F. (2017). Clinical and spinal radiographic outcome in axial spondyloarthritis: Results from the GLAS cohort. Rijksuniversiteit Groningen.
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Chapter 11
Disease-specific questionnaire to assess
physical activity in patients with axial
spondyloarthritis: the axSpA-SQUASH
Fiona Maas* Anna Jetske Baron* Freke Wink Reinhard Bos Yvo Kamsma Hendrika Bootsma Suzanne Arends Anneke Spoorenberg *authors contributed equally
ABSTRACT
Objective: To develop a disease-specific physical activity questionnaire for axial spondyloarthritis (axSpA) patients by modifying the Short Questionnaire to Assess Health-enhancing physical activity (SQUASH), a self-reported questionnaire validated in the general population.
Methods: A qualitative study design based on a stepwise approach was used. First, semi-structured, in-depth interviews were performed with 9 professional axSpA experts concerning the domains and items of the SQUASH in relation to axSpA. Second, a structured focus group session was conducted with axSpA patients to discuss the content and structure of the SQUASH and suggestions for adaptations. Data were recorded, transcribed, and analyzed using objective thematic strategy. Finally, the SQUASH was modified based on adaptations agreed by the majority of patients.
Results: Both experts and patients perceived the original SQUASH as relevant, easy to complete, but somewhat limited in specific response possibilities. Multiple adaptations were suggested. Fifteen adaptations were implemented. The most important adaptations concerned: explanation, rewording, and standardization of response options throughout the questionnaire (e.g. ‘less heavy activities’ instead of ‘slow/moderate activities’) and addition of more specific response possibilities and clarifying examples related to the domains of the SQUASH (e.g. exercise therapy, other transportation activities, childcare).
Conclusions: The self-reported physical activity questionnaire SQUASH was modified using a qualitative study design, in collaboration with both patients and experts, in order to improve face and content validity for the use in axSpA. AxSpA-SQUASH is the first, easy to perform, disease-specific, standardized measurement tool to assess physical activity in axSpA patients.
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INTRODUCTION
Axial spondyloarthritis (axSpA) including ankylosing spondylitis (AS), which is the most well-known phenotype, is a chronic rheumatic inflammatory disease. The hallmark features of axial SpA are inflammation and radiographic damage of the sacroiliac (SI) joints and the spine. Symptoms of chronic back pain and spinal stiffness leads to reduced physical functioning [1-4]. The international Assessment of SpondyloArthritis international Society (ASAS) working group has defined the following main treatment goals of axSpA: reduce signs and symptoms, maintain spinal function, prevent complications and structural damage, and thereby improve health-related quality of life of patients [5,6]. The cornerstone of treatment comprises the use of non-steroidal anti-inflammatory drugs (NSAIDs) in combination with adequate patient education and regular physical exercise [6,7]. Therapeutic exercise programs have shown beneficial effects on physical function and spinal mobility, and even some effect on disease activity [8,9].
In addition to therapeutic exercise programs, regular physical activity is recommended to improve general health and functional status of axSpA patients, i.e. to maintain muscle strength and prevent spinal stiffness [10]. In general, physical activity is defined as any bodily movement produced by skeletal muscles that contributes to energy expenditure [11]. From patients’ perspective, physical activity is important to promote bodily consciousness and to maintain physical independence [12,13]. Previous studies exploring physical activity in axSpA with various measurement instruments showed similar or decreased physical activity levels compared to the general population or to existing normative data [14]. According to general self-reported questionnaires, less physical activity was found in AS patients with high disease activity [15,16]. Accelerometer data of 40 axSpA patients showed lower weekly averages of especially moderate/vigorous physical activities compared to 40 healthy controls [17]. The use of various measurement instruments restricted direct comparison of these studies. As a result, specific guidelines for physical activity are lacking in axSpA [14].
In order to gain more insight into the preferred type and amount of physical activity in axSpA and to support patients to achieve their exercise goals, an easy to perform, valid, and reliable measurement tool is required [10]. Doubly labeled water (DLW) techniques or (tri-axial) accelerometers are regarded as the gold standards for measuring physical activity [18]. However, the use of these instruments in daily clinical practice is limited because data are complex to analyze and, importantly, they do not provide insight into different performed
activities, e.g. variation in activities at work or during leisure time. In clinical studies, in daily clinical practice, and in the self-management of patients, it is more suitable to use self-reported questionnaires since they are cheap, impose low patient burden, and are easy to perform. Self-reported questionnaires are commonly used to assess disease status in axSpA, i.e. disease activity, physical functioning and quality of life [5]. A physical activity questionnaire is lacking.
Several physical activity questionnaires exist for the general population [19-21]. In our previous study in 115 AS patients, we compared the feasibility, test-retest reliability, and validity of two commonly used physical activity questionnaires, the International Physical Activity Questionnaire (IPAQ) [20] and the Short QUestionnaire to Assess Health-enhancing physical activity (SQUASH) [21,22]. The SQUASH showed better feasibility, comparable test-retest reliability (intraclass correlation coefficient SQUASH: 0.89; IPAQ: 0.83) with smaller limits of agreement than IPAQ. The construct validity of both questionnaires, expressed as the correlation with accelerometer data as the gold standard, was insufficient (0.35 for SQUASH and 0.38 for IPAQ). The IPAQ showed an underestimation of physical activity levels [22]. As mentioned in the Quality Assessment of Physical Activity Questionnaire (QAPAQ) Checklist, the correlation has to be ≥0.50 to prove construct validity [23].
The SQUASH seems a promising measuring instrument for the use in axSpA patients but modification was recommended to improve the construct validity, e.g. include more disease-specific items [22]. Therefore, the objective of the present study was to modify the SQUASH in collaboration with axSpA patient and experts in order to develop a disease-specific physical activity questionnaire for axSpA patients.
METHODS
Study designThe development of a disease-specific version of the SQUASH was performed using a qualitative study design based on a stepwise approach. First, semi-structured, in-depth interviews were conducted with experts in the field of axSpA. Second, a focus group session was conducted with axSpA patients from the Groningen Leeuwarden axSpA (GLAS) cohort
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The original SQUASH
Point of departure was the Dutch version of the SQUASH as developed for Statistics Netherlands (CBS) and validated in the general population [21]. The SQUASH refers to physical activity in an average week in the past month and contains of five domains: commuting activities, activities at work and school, household activities, leisure time activities, and sports (Table 1). Specific activities or examples of activities are given within these domains. For each activity, the number of days per week, average time per day, and intensity are asked. In case activities are not performed, the box ‘not applicable’ is available. Activities in the domains ‘activities at work and school’ and ‘household activities’ were subdivided into two intensity categories: light/moderate and heavy, with some examples described. In the domain ‘activities at work and school’, days a week was omitted and only the average time per day is asked. For the calculation of activity scores, the total amount of minutes per activity (minutes per day + [days per week*hours per day*60]) is multiplied with a factor (range 1-9) for perceived intensity, which is based on MET values of the Ainsworth’s compendium scheme as described in the article of Wendel-Vos et al. [21]. The SQUASH total score is calculated by the sum of all activity scores within the specific domains.
Stage 1: Expert interviews
Semi-structured, one-to-one, in-depth interviews were conducted with 9 health professionals with expertise in the field of SpA: two rheumatologists, two rehabilitation physicians, two physician assistants, and three physical therapists (of whom two were also involved in clinical SpA research). All experts provided informed consent to participate in the study.
Prior to the interviews, the experts were asked to read and complete the original SQUASH in order to become familiar with the questionnaire. Subsequently, they were asked to rate the five domains of the SQUASH on a scale from 0 (not important) to 10 (very important) and to answer a set of open-ended questions about the content and structure of the SQUASH. These answers were used as a guideline for the interview in which semi-structured, in-depth questions were asked about the content, structure, missing items, and possible requirements for adaptations (See for examples Supplementary Table S1).
Table 1. Domains and response options for activities, frequency, duration, and intensity included in the orginal SQUASH [21].
Domains Activities Frequency and
duration Intensity Commuting activities Walking Days/week, hours
and minutes/day Slow, moderate, fast Cycling Not applicable Activities at work or school Light/moderate work
(e.g. sitting/standing with some walking)
Hours and minutes/ week
–
Heavy work
(e.g. regularly lifting heavy objects) Not applicable
Household activities Light/moderate work
(e.g. cooking, washing, ironing feeding a child, bathing a child)
Days/week, hours and minutes/day
–
Heavy work
(e.g. scrubbing floors, walking with heavy shopping bags)
Not applicable
Leisure time activities Walking Days/week, hours and minutes/day Slow, moderate, fast Cycling Gardening Odd jobs
Sports To fill out by yourself
(e.g. tennis, fitness, skating, swimming, dancing) Days/week, hours and minutes/day Slow, moderate, fast
Abbreviation: SQUASH: Short QUestionnaire to Assess Health-enhancing physical activity.
All interviews were conducted by one researcher (AJB) and were digitally recorded using a voice recorder. The recorded data were transcribed verbatim and analyzed using an objective thematic strategy [26]. Two researchers (FM & AJB) read and re-read the transcripts and independently coded the data using three steps: 1) open coding, 2) axial coding, and 3) selective coding [27]. First, relevant text fragments were selected and labelled (open coding). Second, open codes were categorized into themes (domains and components of SQUASH), sub-themes (e.g. current options, missing options, adaptations), and categories. Third, this axial coding was reviewed, interrelatedness between the axial coding was identified, and a core set of themes, sub-themes, categories, and corresponding labels (fragments) was created (selective coding). The number of experts who referred to the labels was added. After individual coding was completed, consensus was reached by the same two researchers. Some coding was redefined and a final set was created. This thematic analysis resulted in an
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overview of the different opinions and suggestions for adaptations regarding the domainsand components of the SQUASH. Adaptations suggested by the majority of experts (≥5) were used in stage 2.
Stage 2: Focus group with patients
In the second stage, a focus group session was conducted with 8 axSpA patients from the GLAS cohort who attended the rheumatology outpatient clinic between November and December 2015. Patients were 18 years or older, fulfilled the 1984 modified New York criteria for AS or the 2009 Assessment of SpondyloArthritis international Society (ASAS) criteria for non-radiographic axSpA [28,29], and varied in patient characteristics concerning gender, disease status (symptom duration, disease activity, physical function), and employment status. All patients provided written informed consent to participate in the study.
Consistent with the expert interviews, patients were asked to read and complete the original SQUASH prior to the focus group session and rated the five domains of the SQUASH on a scale from 0 to 10 for the level of importance. As a guideline for the focus group, statements about the content, structure, and potential adaptations of the SQUASH as suggested by the majority of experts were presented using an online quiz program (www.kahoot.it). This online tool allowed patients to vote (agree/disagree) for statements with a mobile phone or tablet. Semi-structured, in-depth questions were used to stimulate a group discussion after each presented statement (See for examples Supplementary Table S2).
The focus group was guided by a discussion leader (AJB) not involved in the clinical management of the patients, a discussion assistant (AS), and a note taker (FM). The discussion assistant supported the discussion leader with additional questions if needed and ensured everyone was involved in the group discussion. Consistent with the experts’ interviews, the focus group session was digitally recorded using a voice recorder. Similar objective thematic strategy as in stage 1 was used to analyze the data. Adaptations suggested by the majority of patients (≥5) were used in stage 3.
Stage 3: Modification of the SQUASH
The modification of the SQUASH was based on the output of stage 2. A suggested adaptation was implemented when it was 1) agreed by the majority of patients, 2) in line with the purpose of the SQUASH, i.e. measuring physical activity, and 3) not in contrast with
another suggested adaptation or current content of the questionnaire. If multiple suggested adaptations covered similar topics, the most accessible adaptation was chosen.
RESULTS
Stage 1: Expert interviews
Experts regarded the SQUASH as an appropriate, short, and patient friendly questionnaire for axSpA. They rated the importance of five domains of the SQUASH together with a mean score of 8.4 out of 10 (range 7.9-9.0). ‘Sports’ was considered as the most important domain for axSpA.
On average, in-depth interviews lasted 40 minutes. The results of thematic analysis are shown in Supplementary Table S3. The experts suggested a total of 50 adaptations, of which 9 were mentioned by the majority (≥5) (Table 2).
Suggested adaptations regarding the domains of the original SQUASH
All experts mentioned that physical therapy or exercise therapy should be included in the questionnaire, preferably as an example within the domain ‘sports’. One expert stated “For management decisions, it is important to ask about exercise therapy because this will reduce spinal stiffness in axSpA”. Five experts mentioned that only active exercise therapy should be included and no massage or traction.
Eight experts proposed supplementary questions about demographic data, severity of symptoms, and comorbidity (Table 2). An expert said “I need additional information to interpret the results of the SQUASH. When someone has severe comorbidity, I will know that this person is less likely to be physically active”. In addition, five experts indicated that it might be important to add ‘type of work’ as a background question. An expert mentioned “The variation of static and dynamic movements during work will determine whether patients experience their work as heavy or less heavy. Prolonged work in the same position causes complaints including stiffness”.
Within the domain ‘commuting activities’, seven experts regarded the current options as limited. An expert stated “I prefer an overview of all performed activities, including other transportation types, such as driving, public transport, and specific types like roller-skating”.
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Another expert said “Other transportation goals are missing, such as going to the grocerystore, to the sports club, or to friends”. Various adaptations were proposed for this limitation but none was mentioned by the majority of experts (Supplementary Table S3).
Five experts suggested that the current examples within the domain ‘household activities’ should be modernized. Within the domains ‘leisure time activities’ and ‘sports’, no other adaptations were mentioned by the majority of experts (Table 2, Supplementary Table S3)
Suggested adaptations regarding the components of the original SQUASH
Six experts were concerned about recall bias and recommended the use of standardized response options for frequency and duration throughout the questionnaire, i.e. the number of days per week and the amount of hours and minutes per day.
Eight experts indicated that it might be difficult to interpret the terms used for intensity. For clarification, five experts suggested adding a reference framework or examples with physiological parameters to the questionnaire (e.g. increased heart rate, respiratory rate, red head, sweating). Furthermore, seven experts suggested dividing activities at work or school and household activites into three categories: light work, moderate work, and heavy work. A last adaptation suggested by the majority of experts was the addition of ‘type of bicycle’. An expert said “A distinction between the electric bicycle and the normal bicycle might be useful since electric bicycles are becoming more popular and may have a different intensity than normal cycling”. However, four experts argued that a distinction would be too complicated for the calculation of total activity scores.
Stage 2: Focus group with patients
Of 18 patients who were asked to participate, 8 were able to join the focus group; 7 AS and 1 non-radiographic axSpA patient, 3 males, mean age was 42 years (range: 27-61), median symptom duration 13 years (range: 5-32), median Bath AS disease activity index (BASDAI) 4.0 out of 10 (range: 0.4-8.8), median Bath AS functional index (BASFI) 2.7 out of 10 (range: 0.0-5.8), and median AS quality of life (ASQoL) 6 out of 18 (range: 0-12) (Supplementary Table S4).
Table 2. Results of thematic analysis of 9 interviews with axSpA experts (conducted in stage 1); ambiguities and possible adaptations towards the SQUASH according to the majority (≥5) of experts.
Themes Categories Labels Number
of experts Domains of SQUASH:
General Current domains
Confusing; some activities might be covered by multiple domains (e.g. leisure time and sports)
7
Missing options
Physical therapy and other types of exercise therapy 9 Space for background information which may be of
influence on physical activity
8
Space for activities not fitting within one of the current domains
5
Adaptations Add physical therapy as an example to the domain ‘sports’ 9 Add only active types of physical therapy (not massage or traction) to the examples
5
Add questions about background information concerning; demographic data, severity of symptoms, and comorbidity
8
Domain: Commuting
activities Current options
Limited 7
Missing options
Other forms of transportation 7
Adaptations n/a
-Domain: Activities at
work and school Adaptations Add question about type of work 5 Domain: Household
activities Adaptations Modernize the examples 5
Domain: Leisure time
activities Adaptations n/a
-Domain: Sports Adaptations n/a
-Components of
SQUASH Frequency Difficult to estimate the average time; possibility for recall bias
6
Intensity Interpretation is difficult 8 Response options are suitable for most activities,
but not for gardening and odd jobs
7
Category ‘light/moderate work’ is too comprehensive 7 Adaptations Standardize the response options throughout the
questionnaire for frequency and duration (i.e. days, hours, minutes)
6
Add explanation to clarify terms used for intensity (e.g. increased heart rate, sweating)
5
Split category ‘light/moderate work’ and ‘heavy work’ into three categories: light, moderate, and heavy
7
Add option to indicate the type of bicycle (e.g. normal bicycle, electric bicycle)
9
Abbreviations: SQUASH: Short QUestionnaire to Assess Health-enhancing physical activity; n/a: not suggested by the majority of experts.
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Patients regarded the SQUASH as an easy questionnaire with good length which will provideadditional information to the already existing axSpA-specific questionnaires for disease status (e.g. BASDAI, BASFI, ASQoL). Completing the SQUASH took 10-15 minutes. They rated the importance of five domains of the SQUASH together with a mean score of 5.9 out of 10 (range 5.3-6.5). ‘Activities at work and school’ was considered as the most important domain. The focus group session lasted two hours, excluding a break of 15 minutes. The results of thematic analysis are shown in Supplementary Table S5. Most patients (≥5) agreed with 7 of 9 adaptations as suggested by the majority of the experts. In addition, patients suggested 23 adaptations of which 13 were mentioned by the majority (≥5) of the patients (Table 3).
Suggested adaptations regarding the domains of the original SQUASH
Most patients agreed with the experts that physical therapy is an important aspect for axSpA which is missing in the SQUASH. They suggested including only physio-fitness or exercise therapy to the examples in the domain ‘sports’, no passive types of physical therapy. Most patients perceived the data retrieved from the questionnaire as oversimplified and agreed with the reviewers to add background questions. A patient said “The answers of the SQUASH are influenced by how someone’s life is arranged. Do you have a job, do you have a family, and do you have young or older children? All these aspects are important”. In accordance with the experts, the patients suggested asking such background questions (Table 3).
Most patients stated that the current options in the domain ‘commuting activities’ are limited, other transportation forms and goals were missed. The majority of the patients suggested changing the current domain name into ‘transport’. Additionally, they suggested adding a category ‘other recurring transportation activities’ to this domain.
With regard to the domain ‘household activities’, most patients agreed with the experts that the examples were outdated but it was not perceived as disturbing. Therefore, modernization was not necessary. However, patients suggested adding childcare (in general) as an example. A patient said “Taking care of children is something that you do all day; it is more than only feeding and bathing a child”.
Table 3.
Results of thematic analysis of the f
ocus g
roup with 8 axSpA patients (
conduc
ted in stage 2) and adaptaions implement
ed (stage 3); ambiguities and
possible adaptations t owar ds the SQU ASH accor ding t o the major
ity (≥5) of the patients
. Stage 2 Stage 3 Themes Ca tegories Labels A dapta tion implemen ted D omains of SQU ASH: G ener al Cur rent domains Confusing; some ac tivities might be co ver ed b y multiple domains – Difficult t o decide t o which domain an ac tivit y belongs M issing options Ph ysical therap y; only ph ysical ac tiv e t ypes ar e impor tant – Space f or back gr ound inf or mation which ma y be of influence on ph ysical ac tivit y A daptations A dd ph ysical therap y as an example t o the domain ‘spor ts ’* Ye s A dd only ph ysical t ypes of ph ysical therap y ( e.g . ph ysio -fitness , ex er cise therap y)* Ye s A
dd questions about demog
raphic data* Yes , added as back gr ound question A dd question about ho w patients f elt dur ing the a verage w
eek in the last
month Yes , added as back gr ound question A
dd question about fulfillment of ph
ysical ac tivit y r ecommendations No , not essential f
or completing the questionnair
e
A
dd question about the household composition (number of childr
en) Yes , added as back gr ound question Cr eat
e an online /mobile application of the axSpa-SQU
ASH No , futur e goal D omain: C ommuting ac tivities Cur rent options Limit ed – M issing options O ther r ecur ring transpor tation ac tivities – A daptations A djust cur
rent domain name int
o ‘transpor t’ Ye s Cr eat e 2 cat egor ies; commuting ac
tivities and other r
ecur ring transpor tation ac tivities Ye s D omain: A ctivities a t w or k and school A daptations A dd question about t ype of w or k* Yes , added as back gr ound question
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Table 3. (C ontinued) Stage 2 Stage 3 Themes Ca tegories Labels A dapta tion implemen ted D omain: Household ac tivities Cur rent examples Out dat ed ( e.g .beating carpet), but not essential
–
Feeding and bathing a child ar
e not sufficient f or childcar e as a whole – A daptations D o not moder niz e examples** – A dd childcar e as an example Ye s D omain: L eisur e time ac tivities A daptations A dd open bo x t
o fill out other leisur
e time ac
tivities
No
, ac
tivities can be filled out in the domain
‘spor ts ’ D o not add ac tivities r egar
ding pet car
e t o examples f or the open bo x – D omain: Spor ts A daptations A dd question about le vel of spor ts Yes , added as back gr ound question Indicat e le vel of spor ts as int ensit y No , back gr
ound question was mor
e accessible Componen ts of SQU ASH Fr equenc y Remember
ing the duration is sometimes difficult
– Int ensit y Response options ar e suitable f or most ac tivities , but not f or gar dening
and some spor
ts – A daptations Use similar r esponse options f or fr equenc
y and duration (i.e
. da ys , hours , minut es)* Ye s A dd explanation t o clar ify t er ms used f or int ensit y ( e.g . incr eased hear t rat e, sw eating)* Ye s Use similar t er ms thr
oughout the questionnair
e ( e.g . light, moderat e, and hea vy) Ye s Use a combination of r esponse options f or each ac tivit y (i.e . slo w/light, moderat e, fast/hea vy) Ye s Re w or d the t er m ‘light/moderat e w or k’ int o ‘less hea vy w or k’ Ye s Split cat egor ies ‘light/moderat e w or k’ and ‘hea vy w or k’ int o 3 cat egor ies* No , r ew or ding of t er ms was mor e accessible D
o not add option t
o fill out t ype of bic ycle** – *A daptation r equir ements also ag reed b y the major ity of exper ts . **A daptation r equir ement pr oposed b y the major ity of exper ts , but disag reed b y the major ity of patients .
In the domain ‘leisure time activities’, the majority of the patients suggested adding an open box to fill out other activities. Activities regarding pet care should, however, not be included. Regarding the domain ‘sports’, patients mentioned that a distinction between the level of sports might be needed. One of the patients stated “The mentality of professional athletes will differ from amateur athletes. They exercise every day with high intensity, sometimes multiple times per day.” This question could be added as a background question or it should be stated at intensity according to most patients (Table 3).
To improve the feasibility of the SQUASH, the majority of the patients suggested creating an online questionnaire for the use on a computer, tablet or mobile phone.
Suggested adaptations regarding the components of the original SQUASH
Patients agreed with the experts to use similar response options for frequency and duration throughout the questionnaire.
With regard to intensity, most patients agreed with the experts that it would be useful to add examples to clarify the terms used for intensity. In addition, patients stated that the terms ‘slow and fast’ are not suitable for gardening and some sports and suggested combining terms, i.e. ‘slow/light’ and ‘fast/heavy’. Patients agreed with the reviewers that there might be difference between light and moderate work in the domains ‘activities at work or school’ and ‘household activities’. Patients suggested three categories ‘light, moderate, and heavy’ or two categories named ‘less heavy work vs. heavy work’.
Finally, most patients disagreed with the experts to make a distinction between types of bicycle.
Stage 3: Disease-specific adaptations of the SQUASH: the axSpA-SQUASH
Of the 20 adaptations agreed on or proposed by the majority of patients, 15 were implemented for the axSpA-SQUASH. Five adaptations were not implemented because others were more accessible, not necessary for the purpose of the SQUASH, or contained a future goal (Table 3). The adaptation regarding an open box in the domain ‘leisure time activities’ was not implemented because other physical leisure time activities can be filled out in the domain ‘sports’. This has been indicated in the examples of ‘sports’.
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Adaptations in the domains of the original SQUASH
Physio-fitness and exercise therapy were added as examples to the domain ‘sports’. A list of background questions was added to the SQUASH, including demographic data, employment status and type of work (blue/white collar), household composition, level of sports, and about how patients felt during an average week in the past month (patient global NRS 0-10). The domain ‘commuting activities’ was renamed into ‘transport’ and redefined with the inclusion of subdomains ‘commuting activities’ and ‘other recurring transportation activities’. Within the domain ‘household activities’, no additional examples were added. However, ‘feeding a child/bathing a child’ was changed into ‘childcare’, which was in line with the original English version of the SQUASH (Table 4 and Supplementary file S6).
Since the majority of experts and patients indicated that it was not always clear to which domain an activity belongs (for example hiking: leisure time or sports?), an extra description was given for walking and cycling in the domain ‘leisure time activities’.
Adaptations in the components of the original SQUASH
Explanations of terms used for intensity have been added to the introduction text, as described by the American College of Sports Medicine, the American Heart Association, and the Dutch National Institute for Public Health and the Environment [30,31]. The terms ‘slow’ and ‘fast’ have been changed into ‘slow/light’ and ‘fast/heavy’. The category ‘light/moderate work’ has been changed into ‘less heavy work’, as the counterpart of ‘heavy work’. For all activities, the number of days per week and the amount of hours and minutes per day are asked in order to standardize the response options throughout the questionnaire (Table 4 and Supplementary file S6 and S7).
Table 4. Domains, subdomains, and response options for activities, frequency, duration, and intensity included in the axSpA-SQUASH, supplemented with explanation of terms and relevant background information.
Domains Subdomains Activities Frequency and duration Intensity Transport Commuting
activities
Walking Days/week, hours and minutes/day Slow/light, moderate, fast/heavy Cycling Other recurring transportation activities
Walking Days/week, hours and minutes/day Slow/light, moderate, fast/heavy Cycling Activities at work or school
Less heavy work E.g. sitting/standing with some walking
Days/week, hours and minutes/day
–
Heavy work E.g. regularly lifting heavy objects
Days/week, hours and minutes/day
–
Household activities
Less heavy work E.g. cooking, washing, ironing, childcare
Days/week, hours and minutes/day
–
Heavy work E.g. scrubbing floors, walking with heavy shopping bags
Days/week, hours and minutes/day
–
Leisure time activities
Walking (recreation) Days/week, hours and minutes/day Slow/light, moderate, fast/heavy Cycling (recreation) Gardening Odd jobs
Sports To fill out by yourself (e.g. tennis, ball sports, skating, swimming, dancing, (physio-)fitness, exercise therapy, or other physically active leisure time activities)
Days/week, hours and minutes/day Slow/light, moderate, fast/heavy Explanation terms used for amount of effort
Slow/light refers to physical activity in which the participant does not experience increased heart rate or increased respiratory rate.
Moderate refers to physical activity in which the participant experiences slightly increased heart rate and slightly increased respiratory rate.
Fast/heavy refers to physical activity in which the participant sweat, experiences accelerated heart rate, and accelerated respiratory rate
Background information
Demographics(e.g. age, gender, education level)
Disease-related data (e.g. symptom duration, time since diagnosis, disease activity (NRS, BASDAI, ASDAS), physical functioning (BASFI))
Information about employment status and type of work (e.g. payed/volunteer work, blue/white collar work), household composition (e.g. number of children living at home), level of sports (amateur/ professional)
Abbreviations: AxSpA-SQUASH: Axial spondyloarthritis Short QUestionnaire to Assess Health-enhancing physical activity; NRS: Numeric Rating Scale; BASDAI: Bath Ankylosing Spondylitis Disease Activity Index; ASDAS: Ankylosing Spondylitis Disease Activity Score; BASFI: Bath Ankylosing Spondylitis Functional Index.
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DISCUSSION
Physical activity is important to maintain good health and is considered as a cornerstone in the management of axSpA. However, no specific physical activity guidelines are available for axSpA patients [14]. To create such guidelines, it is important to develop a disease-specific physical activity instrument that provides insight into the frequency, duration, and perceived intensity of different activities performed by axSpA patients. The original SQUASH, a physical activity questionnaire, which has been developed and validated in the general population, was modified using input from both patients and experts in order to improve the applicability and validity for axSpA. Suggestions for adaptation were identified using qualitative research and the questionnaire was modified into a more standardized and up-to-date axSpA-specific version without major adjustments in the calculation method of the total activity score.
A couple of items have been added to the SQUASH to improve face and content validity. Adding other recurring transportation activities besides commuting activities provides a broader scope of transportation activities. Childcare, as an example in the domain ‘household activities’, covers more activities related to the care of children than the original examples. Possibly, one of the most important disease-specific modifications was the addition of physio-fitness and exercise therapy to the examples of the domain ‘sports’. Physical therapy-related activities, such as aerobics and health club exercise, are part of sports activities that were listed in the calculation method of the original SQUASH [21]. Therefore, these activities could easily be added.
For correct interpretation of answers obtained from the axSpA-SQUASH, experts and patients stated that it is important to know some background information about demographics, comorbidities, disease-related outcomes, type of work, etc. Previous cross-sectional analysis of physical activity measured by a tri-axial accelerometer in 135 AS patients and 99 controls showed that higher body mass index (BMI), impaired physical function, and longer disease duration hampered the performance of physical activity in AS patients, especially during moderate and vigorous activities [32]. A longitudinal study in a historical cohort of 184 AS patients showed that patients with strenuous physical activities during their work, the ‘blue-collar’ workers, had more spinal radiographic progression than patients with more sedentary jobs, the ‘white-collar’ workers [33]. The authors did not report about other performed physical activities, but they stated that certain types of work or physical activities
with increased mechanical stress on the spine may amplify radiographic progression in AS resulting in worse disease outcome.
A major difficulty in the SQUASH was related to the interpretation and applicability of the terms used to express the intensity of an activity. Explanation in the introductory text and the use of combined terms reflecting the intensity of an activity (i.e. ‘slow/light, moderate, and fast/heavy’) will facilitate better interpretation and applicability.
Another modification of the SQUASH was standardization of the response options for frequency and duration of an activity throughout the questionnaire. With this modification, the number of days a week is asked. This will gain insight into the distribution of working hours per week and is useful when investigating the relationship with work absenteeism. Previous studies have shown that axSpA patients often have problems during work or even have to leave their job due to the disease [34].
The axSpA-SQUASH provides the opportunity to quantify the amount of physical activity in a standardized way, both at the group level and individual patient level. Data obtained from the axSpA-SQUASH can be used by health professionals to guide patients in individualized exercise programs. Patients themselves can use the questionnaire as a self-management tool in order to achieve their exercise goals. Furthermore, the obtained data provide the possibility to investigate the relationships and effects of daily physical activity on clinical and functional outcome in axSpA.
The axSpA-SQUASH might also be a useful in other patient groups and in the general population since the majority of the adaptations were focused on the structure of the SQUASH, i.e. explanation, adaptation, and standardization of the response options. Nevertheless, well-known limitations of self-reported questionnaires are subjectivity and the risk of recall bias. Patients may over- or underestimate the levels of physical activity. Experts suggested to offer a diary as aid to complete the axSpA-SQUASH. A diary can reduce the risk for recall-bias but it is time-consuming [35]. However, in our previous study, we have shown that use of SQUASH did not result in an over- or underestimation of physical activity when data were compared with accelerometer data, in contrast to the IPAQ [22].
Qualitative studies have to deal with interpretation bias. Therefore, thematic analysis of the data was independently performed by two researchers and consensus was reached after
11
individual data coding. For the focus group session, we selected a heterogeneous groupof axSpA patients who were representative for the whole axSpA population. Unfortunately, no students or retired patients and relatively few male patients participated in the focus group session. The next step will be to examine validity, test-retest reliability and sensitivity to change of the axSpA-SQUASH in a representative group of patients with axSpA, including students and retired patients. During the analysis of axSpA-SQUASH data, stratification in subgroups of patients would be valuable, e.g. for gender, age, work status, etc. As proposed by the patients, the development of an online application for smartphone or tablet, in which the total activity scores are automatically calculated, will improve the feasibility in daily clinical practice. Since several mobile applications to track physical activity are nowadays available, it will be interesting to compare these tools with an online application of the axSpA-SQUASH in future.
CONCLUSIONS
The original self-reported physical activity questionnaire, SQUASH, was modified using a qualitative study design, in collaboration with both patients and experts in order to improve face and content validity for the use in axSpA. The axSpA-SQUASH is the first, easy to perform, disease-specific, standardized measurement tool to assess physical activity in patients with axSpA.
KEY MESSENGES
••
The axSpA-SQUASH is a disease-specific, self-reported, physical activity questionnaire based on and modified from the original SQUASH.••
The SQUASH was modified using a qualitative study design, in collaboration with patients and experts, to improve face and content validity for the use in axSpA••
The axSpA-SQUASH is the first, easy to perform, standardized measurement tool that assesses duration, frequency, and intensity of physical activities during transport, work, household, and leisure time, including sports, in axial SpA patients.REFERENCES
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SUPPLEMENTARY FILES
Supplementary Table S1. Set of open-ended questions as a guideline for the expert
interviews.
Subject Question
Physical activity in general
(introduction) How would you define physical activity?Which components of physical activity are especially important for axSpA patients? Do you think it is important to identify the amount of physical activity in axSpA patients?
SQUASH in general What do you think of the current structure and included domains of the SQUASH? Do you think the SQUASH is suitable for axSpA patients?
Would you like to add domains or questions to the SQUASH which are especially important for axSpA patients?
Domains of the SQUASH What do you think of the activities asked in the current domains? Would you like to add any further activities to the current domains?
Components of SQUASH What do you think of the current response options regarding frequency, duration, and intensity?
Would you like to add any further response options? Examples of probing
questions Can you explain your answer? Do you have a suggestion for adaptations?
11
Supplementary Table S2. Set of statements and open-ended questions as a guideline for
the focus group.
Subject Statement / question Physical activity
in general (introduction)
I think it is important to identify the amount of physical activity in axSpA patients
SQUASH in
general I think the structure and included domains of the SQUASH are sufficientI think the SQUASH is suitable for axSpA patients I think it is difficult to determine which activity belongs to what domain I think there are items missing which are important for physical activity in axSpA
The experts suggested that it is important to know some background information of the patients (e.g. demographics, disease-related data, comorbidities, type of work). What do you think? Domains of the
SQUASH* I think the questions within the current domains are clearly statedI think the response options for the current domains are sufficient
I think the response options within the domains ‘activities at work and school’ and ‘household activities’ need to be changed into three options: light, moderate, and heavy
I think the given examples are clear
I think there are activities or examples missing
The experts suggested to add a question about physical therapy/exercise therapy to the domain ‘sports’. What do you think?
The experts stated that it is important to make a distinction between types of bicycle. What do you think?
Some experts suggested changing the name ‘commuting activities’ into ‘transport’. What do you think?
The experts stated that the examples within the domain ‘household activities’ were outdated. What do you think?
The experts suggested to modernize or add examples to the domain ‘household activities’ (e.g. making the bed, hanging the laundry, pet care). What do you think?
The experts suggested to add an open box to the domain ‘leisure time activities’. What do you think?
Components of
SQUASH I think the response options for frequency and duration are clear (I understand that I need to fill in the average time spend on an activity) I think the response options for frequency and duration are sufficient
I think similar response options for frequency and duration should be used throughout the questionnaire (i.e. also for the domain ‘Activities at work or school’)
I think I can remember the time I spend on an activity correctly The experts suggested completing a diary for a week. What do you think?
I think the terms used for intensity (‘slow, moderate, fast’) are clear (I understand what is meant by these terms)
I think the response options for intensity are sufficient
I think similar response options for intensity should be used throughout the questionnaire The experts stated that the response options are not suitable for the leisure time activities gardening and odd jobs. What do you think?
Examples of probing questions
Can you explain your answer?
Do you have a suggestion for adaptations?
Abbreviations: SQUASH: Short QUestionnaire to Assess Health-enhancing physical activity; AxSpA: Axial spondyloarthritis. *Statements were asked per domain.
Supplemen tar y T able S3. R
esults of thematic analysis of the int
er
vie
ws with 9 axSpA exper
ts . Themes Subthemes Ca tegories Labels Number of exper ts SQU ASH in gener al For mat – Appr opr iat e f
or both male and f
emale axSpA patients
8 – Shor t, po w er ful , and patient fr iendly 3 – Calculation of ac tivit y scor es is difficult/tak es a lot of time 2 – Ver
y linguistic; not suitable f
or patients with language or r
eading pr
oblems
1
–
Unclear whether the options a), b), and c) ar
e multiple choice options
1 Impor tant aspec ts f or axSpA patients – Ph ysical therap y, ex er cise therap y, and spor ts; impr
oving condition and mobilit
y 6 – Person dependent 4 – All daily ac tivities; spor ts , hobbies , household , w or k, and social ac tivities 4 Cur rent domains – Confusing; some ac tivities might be co ver ed b y multiple domains 7 M issing options – Ph ysical therap y 9 – Space f or back gr ound inf or mation 8 – Space f or ac
tivities not fitting within one of the cur
rent domains 5 – Sedentar y ac tivities 3 – Social ac tivities 1 – M uscle str ength, endurance , and mobilit y ex er cises 1 – Pla
ying musical instruments
1 – Sexual ac tivities 1 – Car e f or childr en 1 Fr equenc y W ay of completion – Repr esentativ e 7 – No space f
or the subdivision of hours per da
y in the domain ‘w or k’ 1 Remember ing – Difficult t o estimat e the a
verage time; possibilit
y f
or r
ecall bias
11
Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Number of exper ts SQU ASH in gener al Int ensit y – Clear concepts 3 – Int er pr etation is difficult 8 – M an y ac tivities will be co ver ed b y moderat e 4 Cat egor ies slo w , moderat e, and fast – Options ar e suitable f or most ac tivities , but not f or gardening and odd jobs
7
–
Options ar
e suitable f
or ac
tivities that expr
ess mobilit y 4 Cat egor ies light/moderat e and hea vy – M ight be a diff er ence in light/moderat e w or k 7 – Concept ‘hea vy ’ is alwa ys clear 3 A daptations For mat –
Keep the SQU
ASH intac t as much as possible 3 – Cr eat e an online questionnair e (mobile application) 2 D omains – Cr eat e a domain ‘other ’ for additional ac tivities 1 – Cr eat e an open bo x t
o fill out other ac
tivities 4 Ph ysical therap y – A dd as an example t o the domain ‘spor ts ’ 9 – A dd only ph ysical t
ypes (not massage or trac
tion) 5 – A dd as a separat e question 2 Fr equenc y – Use similar r esponse option thr
oughout the questionnair
e
6
–
Let patients complet
e a diar y dur ing the w eek pr ior t o the visit 2 – A dd possibilit y t o indicat
e the subdivision of hours per da
y in the domain ‘w or k’ 1 – M ak e it mor
e clear that it is about the a
verage time spend on an ac
tivit
y
Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Number of exper ts SQU ASH in gener al A daptations Int ensit y – A dd explanation t o clar
ify the concepts (
e.g . incr eased hear t rat e, sw eating) 5 – Split options ‘light/moderat e w or k’ and ‘hea vy w or k’ int o 3 options (i.e . light, moderat e, hea vy) 7 –
Use similar concepts acr
oss the entir
e questionnair e (light, moderat e, and hea vy) 2 –
Use only 2 inst
ead of 3 options acr
oss the entir
e questionnair
e
1
–
D
o not ask the int
ensit
y f
or odd-jobs and gar
dening 2 – Remo ve the int ensit y fr om the questionnair e 2 – A
dd question about patients per
ceiv
ed le
vel of fatigue using a Bor
g scale f or each question 2 – Giv e the domain ‘spor ts ’ similar struc tur e as the domain ‘ac tivities at w or k and school ’ and ‘household ac tivities ’ 1 – A
dd examples of jobs in the domain
‘w or k’ 1 Back gr ound inf or mation – A
dd questions about demog
raphic data
8
–
A
dd question about the se
ver
ity of sympt
oms patients exper
ience dur ing the w eek 1 – A
dd question about comor
bidities
1
–
A
dd question about which domain is most impor
tant t
o the patients
1
–
A
dd question about whether patients think the
y fulfill the (int
er)national r ecommendations for ph ysical ac tivit y ( e.g . ≥5 da ys , 30 minut es moderat e int ensiv e ph ysical ac tivities) 1 Commuting activities Impor tant aspec ts f or axSpA patients – Cy
cling and walk
ing 6 – All t ypes of transpor tation 3 – Person dependent 1 Cur rent options – Limit ed 7 M issing options – Distinc tion bet w een t ype of bic ycle f or c ycling 9 – O ther t ypes of transpor tation 7 – O
ther goals of transpor
tation
4
–
It is not clear whether walk
ing/c ycling t o public transpor t ar e co ver ed 1
11
Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Number of exper ts Commuting activities A daptations – A dd dr iving 1 Name of domain – A djust current name int
o ‘transpor t’ 2 W ay of completion – Change ‘not applicable ’ int o ‘other t ypes of transpor tation ’ 3 – A dd question about wh y patients filled ‘not applicable ’ 3 – A dd open bo x; possibilit y t o add other t ypes of transpor tation 2 Distinc tion t ype of bic ycle – A dd option t o fill out t ype of bic ycle ( e.g . nor mal bic ycle , elec tr ic bic ycle) 9 – A
dd question about used per
centage of pedal suppor
t 4 – D o not mak e the distinc tion; it will be t oo complicat ed 4 – A dd open bo x; elec tr ic bic
ycle can be mentioned
1 – A dd t ype of bic ycle as an example f or int ensit y 1 Ac tivities at w or k and school Impor tant aspec ts f or axSpA – Var
iation in static and dynamic mo
vements 4 – Amount of eff or t 4 – All ac tivities 3 Cur rent options – G eneral; pr
ovides no insight int
o the per for med ac tivities 1 M issing options – Var
iation in static and dynamic mo
vements 3 – Volunt eer w or k and car eg iving 1 A daptations – A dd questions about v olunt eer w or k and car eg iving 3 – A
dd climbing the stairs
1 Back gr ound inf or mation – A dd question about t ype of w or k 5
Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Number of exper ts Household activities Impor tant aspec ts f or axSpA – All ac tivities 6 – Var
iation in static and dynamic mo
vements 3 – Amount of eff or t 1 – Person dependent 1 Cur rent options – Out dat ed examples 1 – Vacuuming is a moderat e ac tivit y (not light) 1 – Car e f or childr en is not an household ac tivit y 1 M issing options – M or e examples , e .g . mak
ing the beds
, hang
ing the laundr
y, pet car e 4 A daptations – M oder niz e the examples 5 – A
dd questions about per
ceiv ed limitations 2 – A dd open bo x 1 Leisur e time ac tivities Impor tant aspec ts f or axSpA – All ac tivities 6 – Hobbies 1 – Cy cling 1 – O dd-jobs 1 Cur rent options – Unclear ; ther e ar e diff er ent wa ys of walk ing 3 –
Not enough; ther
e ar e other leisur e time ac tivities 2 M issing options – D istinction bet w een t ype of bic ycle for c ycling 9 – Sedentar y ac tivities 2 – A ctivities r egar ding pets 1 A daptations – A dd sedentar y ac tivities 4 – A dd open bo x t
o fill out other leisur
e time ac
tivities
3
–
A
dd musical instruments as an example
1 – M ak e an in vent or y of per for med leisur e time ac
tivities in axSpA patients in or
der t
o include
them in the SQU
ASH
11
Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Number of exper ts Household activities Impor tant aspec ts f or axSpA – All ac tivities 6 – Variation in static and dynamic mo
vements 3 – Amount of eff or t 1 – Person dependent 1 Cur rent options – Out dat ed examples 1 – Vacuuming is a moderat e ac tivit y (not light) 1 – Car e f or childr en is not an household ac tivit y 1 M issing options – M or e examples , e .g . mak
ing the beds
, hang
ing the laundr
y, pet car e 4 A daptations – M oder niz e the examples 5 – A
dd questions about per
ceiv ed limitations 2 – A dd open bo x 1 Leisur e time ac tivities Impor tant aspec ts f or axSpA – All ac tivities 6 – Hobbies 1 – Cy cling 1 – O dd-jobs 1 Cur rent options – Unclear ; ther e ar e diff er ent wa ys of walk ing 3 –
Not enough; ther
e ar e other leisur e time ac tivities 2 M issing options – D istinction bet w een t ype of bic ycle for c ycling 9 – Sedentar y ac tivities 2 – A ctivities r egar ding pets 1 A daptations – A dd sedentar y ac tivities 4 – A dd open bo x t
o fill out other leisur
e time ac
tivities
3
–
A
dd musical instruments as an example
1 – M ak e an in vent or y of per for med leisur e time ac
tivities in axSpA patients in or
der t
o include
them in the SQU
ASH 1 Supplemen tar y T able S3. (C ontinued) Themes Subthemes Ca tegories Labels Leisur e time ac tivities W ay of completion
Use similar struc
tur e as the domain ‘spor ts ’; only open bo xes 1 – Indicat
e that it is about walk
ing an c
ycling besides commuting ac
tivities
1
D
istinction type of bic
ycle – A dd option t o fill out t ype of bic ycle ( e.g . nor mal bic ycle , elec tr ic bic ycle) 9 – A
dd question about the used per
centage of pedal suppor
t 4 – D o not mak e the distinc tion; it will be t oo complicat ed 4 – A dd open bo x; elec tr ic bic
ycle can be mentioned
1 – A dd t ype of bic ycle as an example f or int ensit y 1 Spor ts Impor tant aspec ts f or axSpA – All ac tivities 5 – Person dependent 4 – Type of spor t; not e ver y spor t is equally suitable f or axSpA patients 4 – Swimming , fitness , and gymnastics 1 –
It is unclear whether mental ex
er cise needs t o be filled out as w ell 1 Cur rent options – Appr opr iat e options; open bo xes 4 M issing options – Distinc tion bet w een t ype of bic ycle f or c ycling 9 A daptations Name domain – Change int o ‘spor ts and ex er cise ’ 3 Examples – A
dd other examples; ball spor
ts , contac t spor ts , endurance spor ts 3 D istinction t ype of bic ycle – A dd option t o fill out t ype of bic ycle ( e.g . nor mal bic ycle , elec tr ic bic ycle) 9 – A
dd question about the used per
centage of pedal suppor
t 4 – D o not mak e the distinc tion; it will be t oo complicat ed 4 – A dd open bo x; elec tr ic bic
ycle can be mentioned
1 – A dd t ype of bic ycle as an example f or int ensit y 1 Back gr ound inf or mation – A dd question about t ype of athlet e 1 †I n cursiv e, cat egor
ies and labels w
er
e discussed in the domain
‘commuting ac
tivit
es
’ and also applied t
o the domains ‘leisur e time ac tivities ’ and ‘spor ts ’.
Supplemen tar y T able S4. Charac ter
istics of axSpA patients who par
ticipat ed in the f ocus g roup session. Par ticipan t G ender , age (yrs), HL A -B27 sta tus D iag nosis , TD (yrs), SD (yrs), medica tion BMI (k g/m 2), smok ing sta tus , c omorbidit y H ighest educa tion le vel W ork (hp w) Spor t (hp w) Leisur e time ac tivities (hp w) 1 M ale , 44, HLA-B27-AS, 10, 13, none 19.5, pr evious , no MA E Dair y far mer (80) -2 Female , 29, HLA-B27-nr
-axSpA, n/a, n/a,
NSAIDs 21.0, no , no MA E Tra vel agenc y emplo yee (36) Yoga (1) Cy
cling and walk
ing (2-3) 3 M ale , 27, HLA-B27+ AS, 10. 15, Anti-TNF n/a, pr evious , no MA E Entr epr eneur (40) Fitness , running , cy cling (4) -4 Female , 48, HLA-B27+ AS, 1, 5, NSAIDs 27.6, pr evious , no MA E Not able t o w or k due to SpA A qua jogg ing , horse riding (2) W alk ing (7) 5 Female , 51, HLA-B27+ AS, 28, 32, Anti-TNF , NSAIDs , DM ARDs 27.0, no , th yr oid pr oblems HPE Not able t o w or k due to SpA Swimming , ph ysio -fitness (1.5) -6 Female , 33, HLA-B27+ AS, 1, 5, NSAIDs 22.6, cur rent, hip pr oblems MA E Not able t o w or k due to SpA Horse r iding (1) -7 M ale , 39, HLA-B27+ AS, 16, 12, Anti-TNF 26.0,no , no MA E Technician (40) Volle yball , mountain bik ing (6) M ot or cy cling (4) 8 Female , 61, HLA-B27+ AS, 46, 28, Anti-TNF , NSAIDs 21.2, cur rent, ménièr e’ s disease SGE A dvisor car e administration (36) Swimming , walk ing , cy cling (3) G ar dening (6) Abbr eviations : n/a: not available; HLA-B27: Human leuk oc yt e antigen B27; TD: Time since diag nosis; SD , Sympt om duration;
BMI: Body mass index; hp
w : Hours per w eek ; AS: Ank ylosing spondylitis accor ding t o modified Ne w Yor k cr itar ia; nr -axSpA: Non-radiog
raphic axial spondyloar
thr itis accor ding t o the A ssessment of SpondyloAr thr itis int er national S ociet y ( ASAS) cr iter ia; M AE: M iddle -le
vel applied education; HPE: H
igher pr
of
essional education; SGE: S
econdar
y general education; NSAIDs: Non-st
er oidal anti-inflammat or y drugs; DM ARDs: Disease -modifying anti-r
heumatic drugs;
Anti-TNF : Anti-tumor necr osis fac tor -alpha therap y.
11
Supplemen tar y T able S5.Results of thematic analysis of the f
ocus g
roup with 8 axSpA patients
. Themes Sub -themes Ca tegories Labels Number of pa tien ts SQU ASH in gener al For mat – Easy questionnair e 8 – G ood length 8 – G ood addition t
o existing axSpA questionnair
es (
e.g
. BASD
AI, BASFI, ASQ
oL) 8 Cur rent domains – Confusion; some ac tivities might be co ver ed b y multiple domains ( e.g . leisur e time and spor ts) 5-7 – Difficult t o decide t o which domain an ac tivit y belongs 5-7 Names – Helps t o r emember ac tivities 1-4 M issing options – Ph ysical therap y; only ph ysical ac tiv e t ypes ar e impor tant 5-7 – Space f or back gr ound inf or mation 5-7 – Space f or ac
tivities that do not fit within one of the cur
rent domains 1-4 Fr equenc y W ay of completion – Appr opr iat e options 8 – Clear f or mulation 5-7 – No space f
or the subdivision of hours per da
y in the domain ‘w or k’ 1-4 Remember ing – Easy f or spor ts , sometimes difficult f or other domains 5-7 Int ensit y – Int er pr etation is personal 1-4 Cat egor ies slo w , moderat e, fast – Clear concepts 8 – Appr opr iat e options 8 – Options ar e suitable f or most ac tivities , but not f or gar
dening and some spor
ts 5-7 Cat egor ies light/ moderat e and hea vy – Appr opr iat e options 5-7 – Choice depends on pr of ession in domain ‘w or k’ 1-4 – Possible diff er ence bet w
een light and moderat
e ac tivities 1-4 – Hea vy ac tivities ar e filt er ed out 1-4
