Linguistic validation and cultural adaptation of an English version of the Evaluation of Daily Activity Questionnaire in rheumatoid arthritis

Developing the English Evaluation of Daily Activity Questionnaire 5.10.14

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Linguistic validation and cultural adaptation of an English version of the

Evaluation of Daily Activity Questionnaire in rheumatoid arthritis

Corresponding author:

Alison Hammond PhD, FCOT,

Centre for Health Sciences Research (OT), University of Salford, Frederick Road,

Salford M6 6PU, United Kingdom

E-mail: [email protected] or [email protected]

Telephone: 0161 295 0038

Fax: 0161 295 2432

Sarah Tyson PhD FCSP

Stroke & Vascular Research Centre, School of Nursing, Midwifery & Social Work,

University of Manchester.

[email protected]

Yeliz Prior PhD

Centre for Health Sciences Research (OT), University of Salford, Salford, UK

[email protected]

Ruth Hawkins

Derby branch National Rheumatoid Arthritis Society (patient research partner)

[email protected]

Alan Tennant PhD

ICF Research Branch, Swiss Paraplegic Research, Nottwil, Switzerland

[email protected]

mailto:[email protected]






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(previously: Academic Department of Rehabilitation Medicine, Section of

Musculoskeletal Disease, Leeds Institute of Molecular Medicine, Faculty of Medicine

and Health, The University of Leeds).

Ulla Nordenskiold PhD

Institute of Neuroscience and Physiology, Rehabilitation Medicine, Sahlgrenska

Academy, Göteborg University, Göteborg, Sweden

[email protected]

Ingrid Thyberg PhD

Department of Clinical and Experimental Medicine, Linköping University, Sweden,

[email protected]

Gunnel Sandqvist PhD

Department of Rheumatology, Lund University, Sweden

[email protected]

Ragnhild Cederlund PhD

Department of Health Sciences, Lund University, Sweden,

[email protected]

Word count of the main text: 2,856





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Abstract

Background: To linguistically validate and culturally adapt the Evaluation of Daily

Activity Questionnaire (EDAQ) for use in rheumatoid arthritis (RA) from Swedish to

British English. The EDAQ is a patient reported outcome measure of daily activity

ability. It includes 11 activity domains (Eating and Drinking; Personal Care; Dressing;

Bathing; Cooking; Moving Indoors; House Cleaning; Laundry; Moving and Transfers;

Communication; Moving Outdoors) and was developed for use in rheumatoid arthritis

(RA).

Methods: The EDAQ was translated from Swedish to English using standard

methods. Activity diaries, cognitive debriefing interviews and focus groups were

completed with people with RA to: generate new culturally applicable items; identify

important items in the Swedish version to retain in the English version; and develop

the English EDAQ based on their views of content and layout. Content validity was

established by linking the EDAQ to the International Classification of Functioning RA

Core Set.

Results: The English EDAQ translation was harmonised with the Swedish version to

ensure equivalence of meaning. Sixty-one people with RA participated. 156 activities

were identified from 31 activity diaries and included in a draft English EDAQ.

Following interviews (n=20) and four focus groups, 138 activities were retained and

three additional domains added (Gardening/Household Maintenance; Caring; and

Leisure/ Social Activities). Most ICF RA Core Set activities are in the EDAQ.

Conclusions: The English EDAQ is a detailed self-report measure of ability in RA.

with good content validity.

Keywords: patient reported outcome measures, rheumatoid arthritis, daily activities,

occupational therapy.


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Background

People with arthritis easily identify major difficulties with every-day activity, but

specific ones can be harder to articulate. People are busy getting on “living their

lives” rather than closely monitoring their problems. Yet difficulty with many simple

things (e.g. using a computer, turning taps, gripping) limit ability to work, do

housework, cook, manage self-care and leisure, causing frustration, pain and

fatigue. Helping people with arthritis to identify (and manage) such problems is a key

aspect of occupational therapy (OT) but this is hampered by a lack of effective

assessment tools.

Most standardised assessments have relatively few physical function items (for

example, the Health Assessment Questionnaire (HAQ) [1] and Arthritis Impact

Measurement Scales 2 (AIMS2) [2]). Consequently, they are seldom used in OT

practice as they lack the detail to identify problems. In contrast, the Evaluation of

Daily Activity Questionnaire (EDAQ) is a self-report assessment which facilitates

detailed assessment, treatment planning and outcome measurement in rheumatoid

arthritis (RA) [3,4]. It was developed, and is used in Sweden in both OT practice and

research [5-9]. It has three parts:

1) details of the patients’ disease duration, patient education programme attendance

and 10 visual analogue scales (VAS) measuring symptom severity, mood and life

satisfaction;

2) 11 domains assessing 102 daily activities including Eating, Dressing, Personal

Care, Bathing, Cooking, Cleaning the House, Laundry, Communication, Moving

Indoors, Transfers and Moving Outdoors. Each domain is assessed in two sections:

(A) evaluates activities without using ergonomic methods or help; and (B) with


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ergonomic methods (e.g. joint protection, activity pacing, assistive technology). The

activities with which patients are least and most satisfied with are also recorded; and

3) a checklist regarding the use of assistive devices (40 items).

The EDAQ is completed by people at home, allowing time to reflect, before or

between OT appointments [10].

Although published in English, the Swedish EDAQ has limitations. It was not

professionally translated meaning some activities are unclear (e.g. “managing potato

water”). Some commonly problematic activities for people with RA in the United

Kingdom (UK) are not included, e.g. using a kettle, turning taps. Furthermore, the

EDAQ was developed in the 1990’s and some activities are now infrequent (e.g.

writing a postcard, taking bread from the oven) and others, not included, are

commonplace (e.g. using a computer). Also only women with RA helped develop its

content. Thus the EDAQ needs to be revise to include activities that all people with

RA in the UK consider problematic, ensuring it reflects users’ perspectives [11,12].

Consequently, the aims of this study were to: linguistically validate and culturally

adapt the EDAQ into British English; and revise it to include daily activities people

with RA consider problematic, important and culturally relevant in the UK,

establishing its content validity. We also investigated validity by: matching the EDAQ

with the daily activities Rheumatology occupational therapists (OTs) commonly

assess, as well as their opinions of the EDAQ; and systematically linking the EDAQ

with the International Classification of Function, Disability and Health (ICF) [13] and

the ICF Core Set for RA [14].


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Methods

Four phases were conducted: linguistic validation into British English using forward

and backward translation; cultural adaptation and item generation using activity

diaries, cognitive debriefing interviews and focus groups; content analysis of OT

activity assessments; and linking the EDAQ with the ICF and ICF Core Set for RA.

Ethical approval was obtained from Oldham Local Research Ethics Committee

(09/H1011/25) and the University of Salford’s Ethics Committee. The study was

carried out in accordance with the Declaration of Helsinki.

Linguistic validation

Recommended procedures were followed [15,16] as follows:

1) The meaning of EDAQ content was identified at a ‘conceptual definition’

meeting with the Swedish EDAQ research team (UN, IT, GS, RC).

2) Independent professional forward translation from Swedish to British English

by two translators (one informed and one uninformed about the study

purpose; both bilingual but native Swedish speakers).

3) Synthesis and refinement of the translations by members of the UK research

team (AH, ST, RH)

4) Independent backward translation from British English into Swedish by two

different translators (one informed and one uninformed; both bilingual but

native British English speakers).

5) Synthesis by the Swedish research team.

6) Harmonization between the UK and Swedish research teams to ensure

equivalence of meaning.


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Cultural adaptation and item generation

Participants

Adults with RA attending five rheumatology out-patient departments were invited to

participate if they were able to read, write and understand English. Patients were

excluded if they had other medical condition(s) causing difficulties with daily

activities. Participants were purposefully sampled to ensure a range of age, disease

duration, disability, employment and living/family status. A minimum of 30 people

were therefore required. All participants were provided with study information

verbally and in writing and provided written consent.

Procedures

To check applicability of Swedish EDAQ items and generate any new items for the

English EDAQ, people with RA completed activity diaries [5, 17, 18], recording

problematic activities for seven days, including weekend days. Following

development of a draft English EDAQ, including revised instructions and a Part 2

completion example, semi-structured cognitive debriefing interviews were conducted

with people with RA who participated in the activity diary phase. Participants were

timed completing the draft English EDAQ and asked about: ease of completion;

length; clarity of instructions; layout; how important they considered including each

item on a scale of 1 (not at all) to 5 (extremely); whether any important activities

were omitted; and if the EDAQ would give an OT sufficient insight into their daily

activity problems. Categorical responses were provided and any comments recorded

verbatim. Focus groups with people with RA were then conducted, asking for

consensus within groups about the wording of the introduction and instructions,


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layout and which items to add, delete or merge. All had completed the EDAQ

beforehand. The research team finalised the English EDAQ using these patient-

generated decisions.

Data Analysis

Diaries were content analysed by two reviewers independently to identify activities

reported as causing difficulties, their frequency and then agreeing analyses [19].

These activities were cross-matched with items in Part 2 of the EDAQ. New activities

identified as problematic were added to a draft English language EDAQ. From the

cognitive debriefing interviews, medians (IQRs) for importance responses for each

item were calculated, with items scoring 3 or less (ie not at all to moderately

important) considered for deletion. Importance ratings were reviewed by two

researchers, and new activities and potential items for deletion or merging identified.

The research team finalised the English EDAQ using these patient-generated

decisions.

Content of Occupational Therapists’ daily activity assessments

and their views of the EDAQ

Members of the North West College of OTs’ Specialist Section-Rheumatology

(NWCOTSS-R: n=23) were asked for their standardised and non-standardised daily

activity assessments. These were content analysed and cross-matched to identify to

what extent these overlapped with the draft EDAQ Part 2. The OTs were also asked

to rate importance of including items. OT ratings were compared with participants

with RA’s ratings, using Mann – Whitney U tests, to identify if any differences in

opinion about item inclusion. A focus group with Rheumatology OTs was conducted

to: identify if any common problems treated were omitted in Part 2; ensure Part 3


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included the most commonly recommended assistive devices; and discuss the

EDAQ’s potential use in practice. Recommendations were considered when

finalising the EDAQ.

ICF Linking

To evaluate content validity of the EDAQ, items were systematically linked by two

researchers to the International Classification of Functioning, Disability and Health

(ICF) [13] and ICF Core Set for RA [14] using the ICF linking rules [20,21].

Results

Linguistic validation

Several changes were made following forward translation. For example, the mood

VAS in Part 1 translated to ‘“high and low spirited.” These terms are not in everyday

use in British English and we decided “happy and unhappy” would better capture

mood. Sixteen Swedish activities were modified because they were rarely

performed in the UK and were replaced by more generic activities, for example: “take

bread out of the oven” to “take things out of the oven”; “drain potato water” to “drain

water from a pan (e.g. pasta, vegetables)”; “write a postcard” to “write.”

Cultural adaptation and item generation

Activity diary respondents’ characteristics are shown in Table 1. Forty-two people

agreed to participate. There were no significant differences in age, gender, disease

duration or severity, activity ability, employment or children living at home status

between responders (n=31) and non-responders (n=11). Of the 102 activities in Part


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2 of the Swedish EDAQ: 84 were identified in participants’ diaries; and 18 were not.

Fifty-four new items were generated: 26 were incorporated into the original Part 2

domains of the Swedish EDAQ and a further 28 were fitted into three new domains;

Gardening and House Maintenance, Caring, and Leisure and Social Activities. Thus,

Part 2 of the draft EDAQ was extended to 14 domains, including 156 activities (Table

3).

Cognitive debriefing interview participants’ characteristics are shown in Table 1

(n=20). The draft EDAQ took 48 (SD 19; range 22 to 84) minutes to complete. Those

taking longer had breaks to avoid fatigue and hand pain. Participants rated all Part 1

rating scales as very or extremely important (Table 2). For items in Part 2, the

median (IQR) scores for the importance of activities are shown in Table 3.

Participants rated 145 /156 items as either very or extremely important. All assistive

devices (Part 3) were rated as very or extremely important, primarily because it

helped participants be aware of what was available. Only a few additional items

were suggested by participants, most of which were already in the EDAQ. Work was

recommended to be added (n=3) and a question included in Part 1, to prompt OTs to

use a work assessment if necessary.

Fifteen considered the assessment easy to complete; two partially (having to re-read

instructions); and three not easy. Two were unclear how to complete Part 2B and

one did not like thinking about difficulties. Most (n=15) considered the EDAQ had

“about the right amount” of questions. However, five said it had too many questions

and 10 considered it took too long. Recommendations to shorten it included:

combining activities where possible (for example, “Slicing food (eg bread and

cheese)” rather than separate items); deleting uncommon items (eg going out onto a

balcony, opening a lift door); omitting the sections in Part 2 about the least and most


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satisfactory items, other problems and solutions (n=6); and making Part 3 optional

(n=5). Some considered the Caring domain less important (n=7).

Eighteen considered the EDAQ Part 2 Sections A and B layout easy to follow but five

commented the instructions and example needed careful reading first. Half (n=12)

considered the instructions adequate, but seven wanted more (one did not reply).

Recommendations were to: add a “not applicable” column in Section A; emphasising

that section B is not completed if activities are not applicable or not difficult; clarifying

how to answer if the person has help; and including a wider range of answers in the

example. These changes were made.

Four focus groups were conducted with four to six participants with RA. The

introduction content was agreed. The consensus was to retain all 10 scales in Part 1

but use horizontal 0-10 numeric rating scales rather than 100mm VAS as these were

considered easier to complete, and wording of scale anchors agreed. A consensus

regarding the layout was finalised. For Part 2, five activities were deleted and 25

combined into 13 activities (see Table 2). All 14 domains were kept. Although Caring

was a possible exclusion, many looked after grandchildren. Gardening and Leisure

were considered especially important to retain as “there is more to life than just doing

everyday activities.” The revised Part 2 thus included 138 activities in 14 domains

(Table 2). The “most and least satisfactory activities” sections were removed and

Part 3 made optional, as device use is noted in Section B of Part 2.

The final EDAQ normally takes 25 to 35 minutes to complete. Almost all (n=19)

considered the EDAQ would help OTs gain adequate insight into their difficulties,

(one could not answer as she had never seen OTs).


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Content of Occupational Therapists’ daily activity assessments and their views of the EDAQ

Twenty NWCOTSS-R members responded, submitting assessments from 17

departments. All used their own department-devised checklists. Standardised

assessments were occasionally used by six departments. These were the HAQ

(n=5); Disability Arm Shoulder Hand scale [22]: n=3); AIMS2 (n=2). Checklists

included 33 (IQR 23-45; range 5 to 55) daily activities. All items on the checklists and

assessments were matched to the items in the draft EDAQ and corresponded to 91

activities (Table 2). Eleven OTs rated the importance of draft EDAQ activities; 83/156

were thought to be very or extremely important to include (Table 3). OTs rated 83

(53%) activities of similar importance as participants with RA, 9 (6%) as more

important and 64 (41%) less important. In the focus group (n=7), no additional

activities were recommended and the assistive device list was modified to include

devices commonly recommended in the UK and ensure terminology was correct.

Initially, OTs were concerned by the EDAQ’s length because it would take too long

during an appointment and some patients would be unable or uninterested in doing

it. We explained the EDAQ is completed at home in the person’s own time and most

participants with RA considered it acceptable and relevant. This allayed their

concerns and they reflected:

“It might save time …if they do it in their own time, it is taking out the time of having

to actually go through it all with them. You've got your talking points there straight

away, which helps focus a lot more [OT2].”

ICF Linking


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The EDAQ has good content validity as all but three ICF RA Core Set Activities and

Participation items (32 categories) are included. Part 2 items relate to 6/9 ICF

Activities and Participation chapters.

Discussion

In this study, we linguistically validated and culturally adapted a British English

version of the Evaluation of Daily Activity Questionnaire, based on what participants

with RA in the UK considered the most important content. We established the

EDAQ’s content validity for the first time. Future research will establish the

psychometric properties of the EDAQ in RA and other musculoskeletal conditions.

.A strength of this study is that it meets requirements for patient reported outcome

measures, as it was developed from the people with RA’s perspectives [11,12]. The

OT participants considered fewer activities very or extremely important to include

than people with RA. Patients’ perspectives can differ from health professionals,

which is why patients’ views should be incorporated when developing patient

reported outcomes [23,24]. As one EDAQ respondent commented:

“Little things to help can make life better…. It’s stupid little things; the EDAQ

shows those small things.”

Additionally, the EDAQ measures activity both without and with ergonomic solutions,

allowing both therapist and patient to evaluate their impact. Initially, we anticipated

fewer activities would be included but were surprised that most participants with RA

considered the longer draft EDAQ necessary to identify their problems sufficiently.

They were however concerned how long it took, so we followed their advice to delete

or merge activities (by 10%) and made Part 3 optional, reducing completion time by


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a third. Although it takes about 35 minutes, people normally do it at their leisure over

several days at home, allowing time for reflection.

The EDAQ has good content validity based on the ICF Core Set for RA activities as

almost all are included and it has more activities related to Domestic Life than most

other measures [25,26]. The limitations of this study are that personal and intimate

relationships (ICF Chapter 7) were not identified as problematic in the diary,

interview or focus group stages, although people with RA can find these difficult.

These are not included in the Swedish EDAQ and our instructions may have been

too focused on everyday activities for people to consider relationships as

appropriate. Including more people with RA in the EDAQ’s development or changing

the instructions given could have identified further problematic activities. However,

the EDAQ cannot include everything; it is not intended to replace a clinical interview

and this may be a more appropriate setting for such topics. Additionally, during

forward and backward translation, we used professional translators and thus did not

include a translator with a clinical background. However, the research team included

experienced Rheumatology occupational therapists (AH, UN, IT, GS, RC), the

Swedish research team (UN, IT, GS, RC) are bilingual and the meaning of EDAQ

content was discussed extensively during both the two day conceptual definition

meeting and later teleconferences following translations to clarify meaning.

Developing the English EDAQ for the UK demonstrated why assessments from other

countries must be culturally adapted as well as translated. We identified activities

commonly problematic in the UK, such as using kettles and teapots, turning taps and

flushing toilets, which were not in the Swedish EDAQ. The conceptual definition

meeting identified why. The Swedes are a nation of ‘real coffee’ drinkers using coffee

machines, rather than kettles, whereas two-thirds of Britons drink tea daily [27].


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Sweden adopted principles of universal design in the 1970’s, thus most Swedish

taps and toilets are easy to use, as. In the UK, this is still not the case so difficulties

persist. Similarly, the EDAQ requires cultural adaptation for other countries as

activities may be problematic in the UK but not elsewhere. For example, UK electric

plugs are hard to push and pull but much smaller and easier to use in the USA.

Conclusions

The English EDAQ is a detailed measure of daily activity ability, reflecting what

people with RA consider is most important to include, with good content validity. As

a comprehensive measure of activities commonly found difficult by people with RA in

the UK, the EDAQ has the potential to be both a useful clinical tool and an outcome

measure for research. Completing it at home saves time in OT appointments and it

could facilitate in-depth discussion between client and therapist as they jointly seek

solutions and treatments to help. Further testing is needed to establish reliability and

validity.


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The authors declare they have no competing interests.

Author contributions

AH, ST, AT and UN were involved in the conception and design of the study. AH, ST

and YP were involved in acquisition of data; AH, ST, YP, AT, RH, UN, IT, GS, RC in

analysis and interpretation of the data. AH and ST drafted the original manuscript.

All authors were involved in the review of draft manuscripts and read and approved a

final version prior to submission.

Acknowledgements:

The study was funded by Arthritis Research UK (Project grant no:18497).

The authors wish to thank: all the study participants with RA; members of the North

West College of Occupational Therapists Specialist Section – Rheumatology for

providing assessments, rating EDAQ content importance and/or focus group

participation - Yvonne Hough (St Helens Hospital), Angela Jacklin (Stepping Hill

Hospital), Val Oultram (Countess of Chester Hospital), Nicky Walker (Leighton

Hospital), Karen Crosby (Manchester Royal Infirmary), Charlie Laver (Pennine MSK

Ltd), Mary Dooley (Southport & Ormskirk District General Hospital), Sandra

Hargreaves (Macclesfield District General Hospital), Lynette Bowler (Victoria

Infirmary, Northwich), Janet Perkins (Trafford General Hospital), Aviva Richards

(North Manchester General Hospital), Annette Sands, Tracey White, Holly Hawtin

(Wrightington Hospital), Fiona Caven (Cumberland Infirmary), Sarah Geeson

(Aintree Hospital), Cynthia Durkin (Burnley General Hospital), Louise Minnis, Susan


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Ellis (Royal Blackburn Hospital), Debra Allen (Royal Lancaster Hospital); Rachel Gill

and Rachel Shuttleworth, Centre for Health Sciences, University of Salford, for

assistance with data collection and data entry; Dr. Lynne Goodacre, North West

Research Design Service for study advice; Vikki Lane, Academic Rehabilitation,

University of Leeds for assistance with EDAQ layout; SEL – University of Salford

Translation Service for EDAQ forward and backward translations; and the Principal

Investigators and research nurses for assistance with participant recruitment: Dr

Chris Deighton, Lindsey Kimber, Nicola Watson, Karen Pearson, Alison Booth

(Royal Derby Hospital); Prof Ian Bruce, Lindsey Barnes, Dmitrij Bartosi (Manchester

Royal Infirmary); Dr Neil Snowden, Denise McSorland (North Manchester General

Hospital); Prof David Walsh, Debbie Wilson (King’s Mill Hospital, Sutton-in-Ashfield);

and Prof Anthony Jones, Anne Lenton (Salford Royal Hospital).

The EDAQ and EDAQ User manual are available for free download and use under

Creative Commons Licenses from:

EDAQ: http://usir.salford.ac.uk/30754/

EDAQ User Manualv1: http://usir.salford.ac.uk/30752/

http://usir.salford.ac.uk/30754/

http://usir.salford.ac.uk/30752/


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Table 1: Participant characteristics in the Item Generation and Cognitive Debriefing

Interview Phases.

Item generation

(activity diary)

phase

(Responders:

n=31)

Item

generation

(activity

diary) phase

(Non-

responders:

n=11)

Interview phase:

(n=20)

Average age (years)

60.29

(SD 15.43)

54.36

(SD 14.32)

61.55 (SD 17.1)

Gender M:F (n) 7:24 2:9 4:16

Disease duration (years) 13.14

(SD 12.17)

12.68

(SD 11.84)

16.43 (SD

14.14)

Health Assessment

Questionnaire (0-3)

0.64 (SD 0.47) 0.89

(SD 0.47)

0.87 (SD 0.78)

Perceived disease severity (0-

10 scale)

4.31 (SD 2.25) 4.43

(SD 2.14)

4.76 (SD 2.20).

Employed (n) 7 6 4


23

Children under 18 years living

at home (n)

8 6 4


24


25

Table 2: Frequency of Swedish EDAQ and UK activities recorded in Activity Diaries and OT assessments; participants’ and OTs’

activity importance ratings (median, IQR) for English EDAQ inclusion; differences between participants’ with RA and OTs’ ratings;

and ICF codes.

Domain and item No.

Activity

Diary

citations

(n=31)

No. OT

Assess-

ment

citations

(n=20)

Median

(IQR)

participants’

importance

ratings

(n=20)

Median

(IQR) OTs’

importance

ratings

(n=11)

p ICF Code/ ICF Category

1. EATING & DRINKING d550; d560

1. Lift a glass 1 8 4 (3-5) 3 (3-4) 0.50 d560 Drinking

2. Lift a cup /mug 2 10 4 (3-5) 5 (5-5) 0.01* d560 Drinking

3. Use a knife and fork 5 13 4 (4-5) 5 (5-5) 0.01* d550 Eating

4. Slice food (eg bread1 - - d440 Fine hand use


26

cheese1 )

Slice bread1 1 2 3 (2-5) 2 (2-3) 0.08

Slice cheese 1 0 0 3 (2-4.25) 2 (2-2) 0.01*

5. Get milk out of fridge 1 0 3 (3-4) 3 (3-4) 0.50 d445 Hand and arm use

(includes d4450pull/ d4451 push

fridge door; d4452 reach for

milk); d4401 grasping (milk)

6. Open a milk carton

/plastic bottle 1 and pour

out

- - d440 Fine hand use; d4453

turning hands/arms

Open a plastic milk carton/

plastic bottle 1

4 6 4 (3.25-5) 4 (4-5) 0.98

Pour out milk 1 2 0 4 (3-4) 3 (3-5) 0.89

7. Open a bottle top (eg 7 3 4 (3-5) 3 (3-5) 0.42 d440 Fine hand use


27

lager)

8. Open a screw top jar or

bottle1

- - d4453 Turn/ twist hands or

arms

Open a screw top jar1 10 13 4.5 (4-5) 4 (4-5) 0.79

Open a screw top bottle 1 7 4 4.5 (4-5) 4 (3-5) 0.47

9. Open a tin or a ring-pull

can

6 9 4 (4-5) 4 (4-5) 0.87 d4453 Turn/ twist hands or

arms; d4402 Manipulating

10. Open a packet/pouch 3 0 4 (2.75-5) 4 (3-4) 0.83 d4402 Manipulating

2. IN THE BATHROOM &

PERSONAL CARE

d510,d520, d530

Get to the toilet 0 0 4 (3.25-5) 5 (5-5) 0.01*

1. Get on and off the toilet 1 15 4 (4-5) 5 (5-5) 0.003* d420 Transferring oneself


28

2. Wipe yourself with toilet

paper /clean self below 1

- - d530 Toileting

Wipe yourself with toilet

paper

1 11 4.5 (4-5) 5 (5-5) 0.02*

Wash your private parts

after going to toilet 1

1 8 5 (3.25-5) 5 (5-5) 0.23

3. Use

suppositories/tampons

0 0 4 (3-4.25) 3 (2-4) 0.08 d5302 Menstrual care

4. Flush the toilet 2 1 4 (3.75-5) 4 (4-5) 0.94 d445 Hand and arm use

5. Arrange your clothes after

going to toilet

0 0 4 (3-5) 5 (4-5) 0.18 d5408 Dressing, other

unspecified

6. Wash your hands 1 2 5 (4-5) 5 (4-5) 0.94 d5100 Washing body parts

7. Brush and comb your hair 1 6 4 (4-4) 4 (4-5) 0.20 d5202 Caring for hair


29

8. Brush your teeth 1 11 4 (4-5) 4 (4-5) 0.84 d5201 Caring for teeth

9. Use a tube of toothpaste 1 3 4 (3-4) 4 (3-5) 0.97 d440 Fine hand use; d5201

Caring for teeth

10. Open a medicine bottle/

blister pack

4 4 5 (4-5) 5 (4-5) 0.59 d4453 Turn/ twist hands or

arms

d440 Fine hand use

11. Do your make up or shave 1 12 4 (3-4) 4 (4-4) 0.56 d5200 Caring for skin

12. Put on jewelry/watch 0 0 3 (3-4) 3 (2-3) 0.04* d440 Fine hand use

3. GETTING DRESSED &

UNDRESSED

d540

1. Put on / take off a coat 0 3 4 (3.25-

4.75)

3 (3-4) 0.15 d5400/ Putting on clothes

d5401 Taking off clothes


30

2. Pull clothes over your head 1 8 4 (3-4.75) 4 (4-5) 0.13 d5400 Putting on clothes

3. Put on front-opening

clothes

0 5 4 (3-5) 4 (3-5) 0.78 d5400 Putting on clothes

4. Do up/undo buttons 4 13 4 (4-5) 4 (3-5) 0.40 d4402 Manipulating

5. Pull clothes over your feet 3 7 4 (4-5) 4 (4-5) 0.56 d5400 Putting on clothes

6. Do up /undo zips 4 11 4 (3.25-5) 4 (3-4) 0.41 d4402 Manipulating

7. Put on tights/socks 3 9 4 (4-4.75) 4 (3-5) 0.54 d5400 Putting on clothes

8. Take shoes/boots on and

off 1

- - d5402 Putting on footwear

d5403 Taking off footwear

Take shoes on and off1 6 8 4 (4-5) 4 (3-5) 0.85

Take boots on and off 1 1 0 4 (4-5) 3 (2-3) 0.001*

9. Tie shoelaces 1 0 5 (4-5) 3 (2-4) 0.01* d4402 Manipulating


31

10. Put on/take off gloves 0 9 3 (3-5) 3 (2-3) 0.02* d5400/ Putting on clothes

d5401 Taking off clothes

11. Fasten clothes at the

back

2 4 4 (4-5) 3 (2-4) 0.01* d4459 Hand and arm use,

unspecified; d4402 Manipulating

4. BATHING & SHOWERING d510,d520

Get to and from the

bathroom

0 0 5 (4-5) 4 (3-5) 0.73

1. Get in and out of the bath 13 15 5 (4-5) 4 (3-5) 0.03* d420 Transferring oneself

2. Shower whilst standing 8 13 5 (4-5) 5 (3-5) 0.58 d5101 Washing whole body;

d4154 Maintain a standing

position

3. Use shower controls /bath

temperature mixers

1 0 5 (4-5) 4 (4-5) 0.89 d4402 Manipulating


32

4. Turn taps 7 10 4 (4-5) 5 (4-5) 0.49 d4401 Grasping

5. Wash your back and neck 5 9 5 (4-5) 4 (3-5) 0.09 d5100 Washing body parts

6. Dry your back and neck 3 8 5 (4-5) 4 (4-5) 0.12 d5102 Drying oneself

7. Wash and dry your feet 0 6 5 (4-5) 4 (4-5) 0.05* d5100 Washing body parts

d5102 Drying oneself

8. Wash your hair 6 13 4 (4-5) 4 (4-5) 0.38 d5100 Washing body parts

9. Style / blow-dry your hair

1

- 4 (3-4) 4 (3-4) 0.43 d5202 Caring for hair

Style your hair 1 1 5 4 (3-4) 4 (3-4) 0.43

Blow dry your hair 1 4 0 4 (3-4) 4 (3-4) 0.38

10. Cut/file your finger nails 3 2 4 (4-5) 3 (3-4) 0.01* d5203 Caring for fingernails

11. Take care of your feet 3 3 5 (4-5) 4 (3-5) 0.02* d5204 Caring for toenails, d520


33

Caring for body parts

5.COOKING d630

Move around in the

kitchen

0 1 4 (3-5) 4 (4-5) 0.60

1. Stand while working in the

kitchen

6 0 4 (3-5) 4 (3-5) 0.52 d4154 Maintaining a standing

position

2. Set the table/ carry plates,

cups etc

5 4 4 (3-5) 3 (3-4) 0.31 d430 Lifting and carrying

objects; (d4300 Lifting; d4301

Carrying in the hands; d4305

Putting down objects)

3. Peel and chop vegetables 14 12 4 (4-5) 4 (3-4) 0.26 d6300 Preparing meals

4. Carry a full pan to the

cooker1

- - d6300 Preparing meals; d4301

Carry in hands


34

Put a full saucepan on the

cooker 1

12 8 5 (4-5) 3 (3-4) 0.001*

Carry a frying pan to/from

the cooker with one hand 1

0 0 5 (4-5) 3 (2-3) 0.01*

5. Drain water from a

saucepan (e.g.

vegetables, pasta)

1 4 4 (4-5) 4 (3-5) 0.15 d4300 Lifting; d4453 Turning or

twisting in hands and arms;

d6300 Preparing meals

6. Remove heavy items (e.g.

bag of sugar) from top

cupboards

1 7 4 (3.75-5) 3 (2-3) 0.01* d4308 Lifting and carrying, other

specified

7. Baking (eg. cakes, bread,

pastry)

4 0 4 (3-4) 2 (2-3) 0.001* d6308 Preparing meals, other

specified

8. Take things in/out of oven 7 1 5 (4-5) 4 (3-4) 0.03* d4300 Lifting; d4301 Carrying in

hands. (if low oven, d4105)


35

Bending

9. Wash up 7 4 4 (3-5) 3 (3-4) 0.28 d6401 Cleaning cooking area

and utensils

10. Put crockery/pans etc into

kitchen cupboards

3 0 4 (3-4) 3 (2-3) 0.01* d4300 Lifting : d4301 Carrying in

the hands; d4305 Putting down

items

11. Use a kettle (e.g. fill,

pour)

10 11 5 (4-5) 5 (5-5) 0.31 d4300 Lifting : d4301 Carrying in

the hands; d4305 Putting down

items

12. Turn cooker knobs 3 4 5 (3.5-5) 4 (4-5) 0.94 d4453 Turning or twisting the

hands or arms

13. Open fridge door 2 0 4 (3-5) 4 (3-5) 0.69 d4450 Pulling

14. Prepare and cook a

snack and/or a meal

9 10 4 (4-5) 5 (4-5) 0.23 d6300/1 Preparing meals –


36

simple / complex

6. MOVING INDOORS

d410- d440

1. Walk indoors (e.g. get to

toilet/ bathroom; round

kitchen)

7 11 4 (4-5) 5 (5-5) 0.05* d4600 Moving around within the

home

2. Open the front or back

door

3 5 5 (4-5) 5 (4-5) 0.52 d4453 Turning or twisting hands

or arms; d4450 Pulling

3. Lock and unlock doors

(Open a Yale lock)

3 13 5 (4-5) 5 (4-5) 0.98 d4453 Turning or twisting hands

or arms

4. Get to the front door in

time to answer

0 0 4 (4-5) 4 (3-5) 0.85 d4600 Moving around within the

home

Open door to the balcony 0 0 3.5 (2.75 – 1 (1-2) 0.40


37

5)

Go outside on the balcony 0 0 3 (1.75-

4.25)

3 (3-4) 0.01*

5. Get to the phone in time to

answer

0 0 4 (4-5) 3 (3-4) 0.01* d4600 Moving around within the

home

6. Stand for longer periods 9 1 5 (4-5) 3 (2-4) 0.001* d4154 Maintaining a standing

position

7. Get up and down steps/

stairs

7 6 5 (4.5-5) 5 (4-5) 0.64 d469 Walking and moving, other

specified

8. Bend to floor/pick up

items

10 7 5 (4-5) 3 (3-4) 0.01* d4105 Bending

9. Reach up 10 6 4 (4-5) 3 (3-4) 0.06 d4452 Reaching

10. Kneel 8 0 5 (3-5) 2 (1-3) 0.001* d4102 Kneeling; d4152


38

Maintaining a kneeling position

11. Carry heavy items

around the house

4 0 5 (4-5) 3 (2-3) 0.001* d4308 Lifting and carrying

objects, other specified

12. Manage heating (e.g.

controls, woodburner,

multifuel stove, open

fire)

1 7 4 (3-5) 4 (4-5) 0.94 d449 Carrying, moving and

handling objects, other specified

and unspecified

7. CLEANING THE HOUSE d640

1. Make the bed 14 5 4 (4-5) 3 (3-4) 0.002* d6408 Doing housework, other

specified

2. Dust and wipe surfaces 6 4 4 (3-4) 3 (3-4) 0.06 d6408 Doing housework: other

specified

3. Sweep/mop floor - - - - - d6408 Doing housework: other

specified


39

Sweep floor 1 1 0 4 (3-4) 3 (2-4) 0.01*

Mop floor 1 2 0 4 (3-4) 3 (2-4) 0.01*

4. Wring out a cloth 2 5 4 (3-4) 4 (3-4) 0.21 d4453 Turning or twisting hands

or arms

5. Vacuum clean 14 10 4 (4-5) 3 (3-4) 0.002* d6402 Cleaning living area

6. Open a window 4 0 4 (3-5) 3 (3-4) 0.06 d4458 Hand and arm use, other

specified

7. Clean windows 3 1 4 (3-4.5) 2 (2-3) 0.002* d6408 Doing housework: other

specified

8. Clean the bath 3 0 4 (4-5) 3 (2-3) 0.001* d6408 Doing housework: other

specified

9. Heavy housework (e.g.

move furniture, take

10 11 4.5 (3-5) 2 (2-2) 0.002* d6408 Doing housework: other

specified


40

down curtains)

8. LAUNDRY & CLOTHES

CARE

d640

1. Do the hand washing 1 2 3 (3-4) 3 (2-3) 0.004* d6400 Washing and drying

clothes and garments

2. Use a washing machine

(e.g. load and unload)

3 3 4 (3-5) 4 (3-5) 0.77 d6403- Using household

appliances d6400 Washing and

drying clothes and garments

3. Hang out washing 6 1 4 (3-5) 3 (3-4) 0.05* d6400 Washing and drying

clothes and garments

4. Plug in and pull out a plug 2 6 4 (4-5) 4 (3-5) 0.31 d4401 Grasping; d4402

Manipulating


41

5. Put up an ironing board 1 0 4 (4-5) 3 (2-3) 0.002* d4458 Hand and arm, other

specified

6. Iron 10 7 4 (3-5) 3 (3-4) 0.12 d6408 Doing housework: other

specified

7. Do small repairs e.g.

hemming, buttons

0 0 4 (3-5) 2 (1.75-2) 0.001* d6500 Making and repairing

clothes

8. Cut cloth and/ or use

scissors

2 4 4 (3-5) 2 (1-3) 0.01* d4402 Manipulating

9. Pick up pins/needles 0 0 4 (3-5) 2 (1-2) 0.001* d4400 Picking up

9.MOVING & TRANSFERS

d410,d420

1. Get into and out of bed1 - - d420- Transferring oneself;

d4106- Shifting the body's

centre of gravity- d4100 Lying


42

down

Get into bed 1 2 15 4 (4-5) 5 (5-5) 0.02*

Get out of bed 1 10 15 4 (4-5) 5 (4-5) 0.05*

2. Turn-over and sit up in

bed

3 4 5 (4-5) 5 (5-5) 0.03* d4108 Changing basic body

position, other specified

3. Stand up from a chair

without armrests

7 15 5 (4-5) 4 (3-5) 0.03* d4104 Standing

4. Pull up

bedclothes/duvet

3 0 4 (4-5) 4 (4-5) 0.96 d4401Grasping; d5700

Ensuring one's physical comfort

5. Getting a comfortable

sleeping position

12 0 5 (4-5) 5 (4-5) 0.80 d4150 Maintaining a lying

position; d5700- Ensuring one's

physical comfort

6. Sit for longer periods

(e.g. in a car, train)

6 0 4 (4-5) 3 (2-3) 0.001* d4153 Maintaining a sitting


43

position

10.COMMUNICATION d340,d360

1. Use a phone or mobile

(e.g. call, text)

3 6 5 (4-5) 5 (4-5) 0.45 d3600 Using telecommunication

devices

2. Hold a book 3 1 4 (3-5) 3 (3-4) 0.26 d4401 Grasping

3. Write 7 13 5 (4-5) 4 (4-4) 0.29 d345 Writing messages

4. Handle money and

credit/debit cards (eg

use cash machine, pay

by card)

2 5 4 (3-5) 4 (4-4) 0.27 d4408 Fine hand use, other

specified; d860 Basic economic

transactions;

5. Use a computer and a

mouse

5 1 4 (4-5) 3 (3-4) 0.03* d3601 Using writing machines

6. Use remote controls

(e.g. TV)

2 0 4 (3.5-5) 4 (3-4) 0.11 d4408 Fine hand use, other

specified;


44

11.MOVING OUTDOORS &

SHOPPING

d4

1. Walk on level ground 16 13 5 (4-5) 5 (4-5) 0.73 d450 Walking

2. Go for a long walk (e.g. a

mile)

16 3 4 (4-5) 3 (2-3) 0.002* d4501 Walking long distances

3. Go up stairs without a

handrail

9 13 5 (4-5) 3 (3-4) 0.001* d4558 Moving around, other

specified

4. Travel by public transport 3 10 5 (4-5) 3 (3-4) 0.005* d4702 Using public motorized

transportation

5. Get in and out of a car 7 6 5 (4-5) 4 (3-5) 0.01* d4701 Using private motorized

transportation; d4208

Transferring oneself, other

specified

6. Drive a car (e.g. hold 12 13 5 (4-5) 4 (4-4) 0.02* d4751 Driving motorised


45

steering wheel, turn car

key, change gear)

vehicles

7. Fill the car with petrol 1 0 5 (4-5) 3 (2-4) 0.001* d6503 Maintaining vehicles

8. Open a heavy (eg shop)

door1

4 8 4 (4-5) 2 (2-4) 0.02* d4450 Pulling; d4451 Pushing;

d4453 Turning or twisting the

hands or arms

Open a lift door 0 0 3 (2-5) 2 (2-2) 0.02*

9. Walk around the shops 7 0 4 (4-5) 3 (3-4) 0.02* d4601 Moving around within

buildings other than the home;

d4602 Moving around outside

the home and other buildings

10. Carry shopping 15 5 5 (4-5) 3 (3-4) 0.003* d4301 Carrying in the hands

11. Do the weekly shopping 15 13 5 (4-5) 4 (3-4) 0.01* d6200 Shopping


46

12. Hold a walking stick 1 2 4 (4-5) 4 (4-5) 0.46 d4401 Grasping; d465 Moving

around using equipment

13. Use a mobility scooter 1 0 5 (4.25-5) 3 (3-4) 0.001* d4701 Using private motorized

transportation; d465 Moving

around using equipment

12. GARDENING & HOUSE

MAINTENANCE

d650

1. Change a light bulb 1 4 4 (4-5) 2 (2-3) 0.001* d4452 Reaching; d4453 Turning

or twisting the hands or arms;

d6501 Maintaining dwelling and

furnishings;

2. Light gardening (e.g.

weed, prune, plant)

d6505 Taking care of plants

inside and outside; d4101

Squatting; d4105 Bending


47

Weed 1 1 0 3 (3-4) 2 (2-3) 0.003*

Prune 1 4 0 3 (3-4) 2 (2-3) 0.004*

Plant out 1 3 0 4 (3-5) 2 (2-3) 0.002*

3. Heavy gardening (eg dig,

mow)

d6505 Taking care of plants,

indoors and outdoors; d430

Lifting and carrying objects

Mow 2 1 0 3 (3-4.5) 2 (2-3) 0.004*

Heavy gardening 2 7 9 4.5 (3-5) 2 (2-2) 0.001*

4. Climb ladders 2 0 4 (2.5-5) 2 (1-2) 0.002* d4551 Climbing

5. Clean the car (inside and

out)

1 0 3.5 (3-4.75) 2 (1-2) 0.001* d6503 Maintaining vehicles

6. Do household repairs 1 0 4 (3-5) 2 (2-3) 0.003* d6501 Maintaining dwelling and

furnishings


48

7. Car maintenance (eg oil,

water)

2 0 4 (3-5) 1 (1-3) 0.003* d6503 Maintaining vehicles

13 CARING d660

1. Feed a child, prepare

bottles

2 0 5 (3-5) 5 (5-5) 0.40 d6604 Assisting others in

nutrition

2. Bathe a child/ change

nappies

2 0 5 (4-5) 5 (5-5) 0.23 d6600 Assisting others in self-

care

3. Dress a child 2 0 4 (4-5) 5 (5-5) 0.15 d6600 Assisting others in self-

care

4. Do a child’s hair 1 0 4 (3-5) 4 (3-5) 0.83 d6600 Assisting others in self-

care

5. Use children’s

equipment (e.g. high

chair, push chair, car


movement


49

seat)

6. Put a child in/ out of

high chair, push chair,

high seat


movement

7. Lift and carry a child 2 0 4 (3-5) 4 (4-5) 0.68 d6601 Assisting others in

movement

8. Play with children 2 0 4 (3-5) 4 (4-5) 0.68 d9200 Play

9. Care for others (e.g.

elderly relatives)

1 0 4.5 (4-5) 4 (3-5) 0.41 d669 Caring for household

objects; d6601Assisting others,

other specified and unspecified

14.LEISURE & SOCIAL

ACTIVITIES

d910, d920, d930

1. Crafts (e.g. knitting,

crochet, sewing,

7 1 4 (3-5) 3 (3-4) 0.07 d9203 Crafts


50

embroidery, model

making)

2. Do-It-Yourself (e.g.

using tools, painting and

decorating)

1 1 4 (4-5) 3 (2-3) 0.001* d9204 Hobbies;

3. Visit friends/ socializing

(eg pub, theatre, cinema)

4 2 4 (4-5) 4 (4-5) 0.54 d9205 Socialising

4. Attend community /

religious groups or

classes

1 2 4 (3.5-5) 4 (3-4) 0.17 d910 Community life; d9300

organized religion

5. Physical activities (e.g.

dance, active sports,

swimming, cycling)

3 4 5 (4-5) 4 (3-4) 0.003* d9208 Recreation and leisure,

other specified; d4552 running;

d9201 sports; d4554 swimming;

d4700 using human-powered

vehicles


51

6. Quiet recreation (e.g.

painting, cards)

1 4 4 (4-5) 3 (3-4) 0.003* d9208 Recreation and leisure,

other specified;

7. Performing arts (e.g.

music, choir, dramatics)

1 0 4 (3.5-5) 3 (2-4) 0.002* d9202 Arts and culture

8. Pet care (e.g. feed,

groom)

1 0 4 (3-5) 3 (3-4) 0.06 d6505 Taking care of animals

9. Take dog for a walk (e.g.

hold leash)

7 0 4 (3-5) 3 (3-4) 0.10 d6505 Taking care of animals;

d4401 Grasping

Key:

Bold items = new English EDAQ and partially altered Swedish items; Italicised items: Swedish EDAQ activities deleted from the

English EDAQ.

1 = Swedish EDAQ activities combined into one item.


52

Table 2: Median (IQR) importance ratings and ICF codes for EDAQ Part 1 scales

Part One: numeric

rating scales

RA

participants’

ratings

(n=20)

OT

participants’

ratings

(n=11)

p ICF code ICF category

Disease activity 4 (4-5) 4 (4-5) 0.85 nd-ph Not definable- physical health

Mood 4 (4-5) 4 (4-5) 0.67 b152 Emotional functions

Pain when resting 5 (4.25-5) 4 (4-5) 0.12 b280 Sensation of pain

Pain when moving 5 (4.25-5) 5 (4-5) 0.92 b280 Sensation of pain

Stiffness 5 (4-5) 4 (4-5) 0.28 b7800 Sensation of muscle stiffness

Limitations in joint 5 (4.25-5) 5 (4-5) 0.61 b710 Mobility of joint functions


53

movement

Fatigue 5 (4.25-5) 5 (4-5) 0.92 b130 Energy and drive functions

Worry 4 (4-5) 4 (4-5) 0.56 b152 Emotional functions

Sleep problems 4 (4-5) 5 (4-5) 0.67 b134 Sleep problems

Satisfaction with life 4 (4-5) 4 (4-5) 0.61 nd-gh Not definable- general health

Additional questions:

Work (paid, unpaid) or

education

d850 Remunerative employment; d855 Non-

remunerative employment; d825 Vocational

training; d830 Higher education; d839

Education, other

Patient education

programme attendance

d570 Looking after one’s health


54

Linguistic validation and cultural adaptation of an English version of the Evaluation of Daily Activity Questionnaire in rheumatoid arthritis

Documents