Literature search and issue list
Our literature search identified 45 questionnaires assessing PROs in shoulder patients (see section on list of questionnaires below). Full text versions of 43 questionnaires with a total of 648 items were available. In case of instruments including clinician assessment and patient-report, we included both with the exception of objective measurements. The 648 items covered 805 issues potentially relevant to shoulder patients, as several items included two or more issues (e.g., “I have difficulty opening, holding, pushing, or pressing [e.g., triggers, levers, heavy doors]”. All issues were assessed by three raters (two orthopedic surgeons, one psychologist) concerning their relevance for the assessment of the forgotten joint concept. All three raters agreed on in/exclusion of 68.5% of the issues, whereas for 31.5%, only two raters agreed. After a consensus discussion, 158 issues were dropped and 647 remained in the list. Please see Figure 1 for an overview of the item development process.
List of questionnaires identified in the literature search
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1.
Wolfgang criteria tor rating results of rotator cuff surgical repair
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2.
Shoulder pain score
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3.
Single Assessment Numeric Evaluation (SANE) rating
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4.
Watson shoulder score
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5.
Melbourne Instability Shoulder Scale (MISS)
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6.
Walch Duplay shoulder instability score
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7.
Shoulder function assessment (SFA) scale
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8.
Swanson shoulder score
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9.
Upper extremity Functional index (UEFI)
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10.
Upper extremity functional limitation scale
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11.
Rowe shoulder score
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12.
Rockwood score for sternoclavicular joint arthritis
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13.
Shoulder Pain and Disability Index (SPADI)
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14.
American Shoulder and Elbow Surgeons (ASES) shoulder assessment
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15.
Upper Extremity Function Scale for Upper Extremity Disorders
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16.
McGinnis and Denton rating scale for scapula fractures
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17.
Western Ontario Osteoarthritis of the Shoulder (WOOS) Index
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18.
Simple shoulder test (SST)
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19.
Penn shoulder scale (PSS)
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20.
Hospital of the University of Pennsylvania shoulder score
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21.
Shoulder rating questionnaire
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22.
Subjective Shoulder Rating Scale (SSRS)
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23.
Western Ontario Shoulder Instability Index (WOSI)
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24.
Western Ontario Rotator Cuff Index (WORC)
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25.
Modified Rowe shoulder score
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26.
Imatani acromioclavicular separation evaluation system
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27.
DASH - Disabilities of the Arm, Shoulder and Hand
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28.
Rotator Cuff Quality of Life measure (RC-QOL)
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29.
Herscovici shoulder scale
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30.
Harryman rotator cuff functional assessment
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31.
Upper Limp Functional Index (ULFI)
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32.
UCLA end-result score
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33.
The Japanese Orthopedic Association Shoulder 36 1.3
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34.
Oxford instability score
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35.
Shoulder instability questionnaire
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36.
Oxford Shoulder Score (OSS)
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37.
Darrow Score for acromioclavicular separation
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38.
United Kingdom Shoulder Disability Questionnaire (SDQ-UK)
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39.
Flexilevel scale of Shoulder Function (Flex-SF)
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40.
Constant-Murley shoulder score
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41.
Shoulder activity rating scale
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42.
UCLA shoulder rating score
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43.
Thorling subjective rating for subacromial decompression
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44.
* Shoulder severity Index (SSI)
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45.
* Athletic shoulder outcome scoring system
*questionnaires not accessible.
Operationalization and item selection
The retained issues were operationalized into items by one orthopedic surgeon and one psychologist. The items were phrased to assess frequency of joint awareness and to fit the previously-mentioned response categories. In a next step, the 647 items were checked for duplicates by one rater, which substantially reduced the number to 243. Further assessment of redundancy (strong content overlap, e.g., taking off a pullover/putting clothes over your head) was done by three raters (two orthopedic surgeons, one psychologist). For 71.4% of the items, all three raters agreed on the redundancy rating. After a consensus discussion (focusing especially on which item of a group of similar items was best retained), 97 items remained in the item list.
The difficulty of these 97 items was rated by three orthopedic surgeons. The difficulty ratings were identical (all three raters) for 38.2% of the items; for 57.7% of items, the raters chose adjacent categories. Aggregated ratings were as follows: 18 low-difficulty items (e.g., turning a key), 52 moderate-difficulty items (e.g., placing a jacket on a hanger), and 27 high-difficulty items (e.g., throwing a ball).
Item evaluation by expert board
The 97 items were reviewed by the international expert board. On the basis of these reviews, we deleted 30 items, added 2 new items and rephrased 14 items for clarity. Reasons for deletion were the following: 3 items described activities applicable only to a few patients (e.g., playing golf), 9 items were too non-specific (e.g., playing a musical instrument, engaging in sexual activity), 16 were considered to still have strong content overlap with other items, and two were rated as too cumbersome (e.g., recreational activities in which you take some force or impact through your hand).
In parallel we performed an update of the literature search (in August 2013), which identified one additional questionnaire [17] from which one new issue was added to our item list after being made more specific and passing expert evaluation.
After this elaborate procedure, 70 items remained for translation into German and subsequent use in collecting patient feedback.
Item evaluation by patients
The German and English items were evaluated by 30 shoulder patients at the Kantonsspital St. Gallen and 30 shoulder patients at the New Royal Infirmary of Edinburgh. The patients (63% male; mean age 46.6y, SD 18.2) consisted of a heterogeneous convenience sample of common shoulder problems with surgery for rotator cuff pathologies (43%) and joint replacement (26%) being the most common types of surgery.
Patients rated the understandability of the introduction as follows: very easy 27.6%, easy 51.7%, neither easy nor difficult 19.0%, very difficult 1.7%. Answering questions on shoulder awareness was rated as slightly more difficult: very easy 20.0%, easy 41.7%, neither easy nor difficult 30.0%, difficult 5.0%, and very difficult 3.3%.
We did not observe a statistically significant difference between countries with regard to difficulties with answering questions on joint awareness. For understandability of the introduction we found a statistical trend (p = 0.07) suggesting that the German version was slightly easier to understand.
91.4% of patients reported no item to be difficult to understand and 96.6% considered none of the items to be intrusive. No item was rated as difficult by more than one patient, whereas two patients considered the item on wiping the bottom as intrusive.
Based on these findings we did not exclude items from the item list and did not make any amendments to the introductory text.
Patient feedback did not result in creation of further items, as the suggested activities were either already covered by very similar items (e.g., washing and drying dishes or lying on one’s back) or described uncommon activities (e.g., holding a wind instrument). For details on patient comments, see section on patients’ comments on item list. The final issue list to be used for large-scale data collection in a next step and IRT analysis is given in the section on the final issue list.
Patients’ comments on item list
General comments:
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Answers depend on whether or not taking pain medication
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Don’t or can’t do sports (four patients)
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Many activities I don’t do
Suggested further activities:
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Putting on a cap
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Putting on ear rings
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Putting on a scarf
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Washing and dry pans and dishes
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Playing rugby
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Pushing a door handle down
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Holding a wind instrument
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Lifting arm above breast height
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Lying on the back
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Cutting or peeling vegetables
Final issue list to be used for large-scale data collection and IRT analysis
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1.
Taking off pullover
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2.
Brushing teeth
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3.
Using telephone
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4.
Putting on trousers
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5.
Watching television
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6.
Washing face
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7.
Using knife and fork
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8.
Light recreational activities
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9.
Ironing clothes
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10.
Applying deodorant
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11.
Reaching overhead to high shelf
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12.
Threading belt through trousers
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13.
Blow drying hair
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14.
Working on computer
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15.
Washing armpits
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16.
Taking a shower
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17.
Pulling chair out from table
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18.
Changing bed linen
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19.
Lying on affected side
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20.
Going for a walk
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21.
Swimming
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22.
Drying back with towel
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23.
Playing sports involving overhead serve
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24.
Taking exercise classes
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25.
Cleaning windows
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26.
Carrying small children
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27.
Carrying heavy suitcase
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28.
Using banister when climbing stairs
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29.
Do-it-yourself jobs around the house
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30.
Folding clothes
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31.
Closing zip of jacket
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32.
Turning steering wheel in car
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33.
Reaching for seat belt in car
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34.
Putting on coat or jacket
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35.
Taking off coat or jacket
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36.
Putting heavy object on shelf at shoulder level
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37.
Putting light object on shelf above head
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38.
Drinking from large glass
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39.
Unfastening belt
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40.
Holding overhead rail
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41.
Doing hair
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42.
Light garden work
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43.
Wiping bottom
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44.
Riding bicycle
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45.
Sitting for an hour
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46.
Buttoning up shirt/blouse
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47.
Putting on shoes
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48.
Handwriting
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49.
Working overhead >2 minutes
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50.
Washing hair
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51.
Turning key
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52.
Reaching for backseat in car
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53.
Pushing open heavy door
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54.
Pulling out of back pocket
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55.
Hanging jacket on coat-hanger
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56.
Opening tight jam jar
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57.
Leaning on elbow
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58.
Getting on bus/train
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59.
Performing sudden movement
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60.
Push-ups
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61.
Clapping hands
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62.
Carrying shopping bag
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63.
Swinging arms when walking
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64.
Getting out of car
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65.
Throwing ball
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66.
Light housework
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67.
Heavy housework
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68.
Before falling asleep
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69.
Resting
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70.
Scratching between shoulder blades