Scoring: WEll-being and Satisfaction of CAREgivers of Children with Diabetes Questionnaire (WE-CARE) Robert A. Gerber and Joe C. Cappelleri October 26, 2006 Content Overview WE-CARE encompasses 4 multi-item scales: Psychosocial Well-being (13 items), Acceptance of Insulin Administration (6 items), Ease of Insulin Use (9 items), and Treatment Satisfaction (9 items). For each multi-item scale, a scale score can be calculated; the items can also be combined into a total score. For each item in WE- CARE, Table 1 summarizes the scale assignment, whether or not the item needs to be recoded, the range of possible item and scale scores, the formula for scoring the scale, and the rules for missing data for each scale. Response Coding and Item Scoring Note that there is an important distinction between the original response code and the item score of an item. Response codes are the original values that should be used during data entry. Most of the time, the item score will be the same as the original response code; however there are some situations where this is not true. For this reason, it is important to retain a copy of the data with the original response codes in addition to a copy with the item scores. All original response codes and final item scores range from For final item scores, all items should be scored such that a higher score means greater satisfaction, ease of use, acceptance of insulin, and psychosocial well-being. Items are recoded when the original response codes are scored to have the opposite meaning (i.e., higher is worse). It is important to recode the appropriate items in order to ensure proper scale scores. WE-CARE Scoring Page 1
Recoding of required items should be done as shown below: Original Final Item Value Score 1 5 2 4 3 3 4 2 5 1 Calculation of Scale Scores All multi-item scale scores range from 0-100, with higher scores indicating greater satisfaction, ease of use, acceptance of insulin administration, and psychosocial wellbeing. Make sure to use item scores, not the original item responses, for computing the scale score see Table 1 for those items that need to be recoded. If 80% or the entire questionnaire are not missing, than the scale scores and total score can be calculated. If 50% or fewer of the items used in calculating each scale score or the total score have missing item scores, then the scale score is calculated by taking the average of the remaining items in the scale, rather than the average of all the items. If more than half of the items are missing in a scale, the scale score is not calculated, and should be set to blank/missing. The general formula used for each calculation is as follows (if 50% or more of the items are completed within each scale): [Average of final item scores - minimum possible average score] * 100 [Maximum possible score-minimum possible score] The average is taken by adding the final item scores together and dividing by the number of items that have been completed. WE-CARE Scoring Page 2
Scoring Examples Example A: 1. A subject answered the Treatment Satisfaction scale as (in order): 4,3,5,4,3,3,2,2,1. 2. The last 8 items are reverse coded; the final item scores are: 4, 3, 1, 2, 3, 3, 4, 4, 5. 3. The average of these responses is: 4+3+1+2+3+3+4+4+5 = 29/9 = 3.22. 4. The last calculation would be as follows: (3.22-1)/(5-1) = 2.22/4 = 0.56 X 100 = 56. Thus, the score is 56 out of 100. Example B (Missing Data) 1. If the respondent had left the first three items blank, such that the original item responses in the Treatment Satisfaction Scale were: X, X, X, 4, 3, 3, 4, 2, 1 2. The final recoded item scores would be as follows: 2, 3, 3, 4, 4, 5. 3. The average of these response is: 2+3+3+2+4+5=19/6=3.17. 4. The remaining calculation would be as follows: (3.17-1)/(5-1)=2.17/4=0.54 X 100=54. Thus, the score is 54 out of 100. WE-CARE Scoring Page 3
Table 1: WE-CARE Scales and Items Item number & Coding* Scale name followed by item descriptions Psychosocial Well-being Scale (13 items) 1 The burden of care is overwhelming 2 I get frustrated a lot 4 I feel depressed 14 Was a burden on my marriage 15 Made me spend less time with my other children or other family members 16 Made me spend less time at work 17 Interrupted my work 18 Interrupted my social activities 19 Impact on: Your work (job) situation 20 Your leisure time activities 21 Your marriage/partnership 22 Your relationship with your children 23 Your sexual life Acceptance of Insulin Administration (6 items) 5 The pain that giving insulin causes your child 6 Preparing insulin for administration 7 Having to administer insulin to your child 8 Administering insulin prior to meals 9 Administering insulin in public places 10 Administering insulin at home Ease of Insulin Use (9 items) 11 Disposing of used supplies 12 Carrying insulin and supplies 13 Storing insulin 24R How easy or difficult is it for you to prepare the insulin dose? 25R How easy or difficult is the insulin to use? 26R How easy or difficult is it for you to carry insulin? 27R How easy or difficult is it for you to carry supplies? 33 I prefer to stay home rather than use insulin away from home 34 I find it difficult to administer the insulin away from home Calculation formula Recoding: No items need to be reversed or recoded. 1,2,4,14,15,16,17,18,19, 20,21,22,23)-1)/4]*100 Recoding: No items need to be reversed or recoded. 5,6,7,8,9,10)-1)/4]*100 Recoding: 4 items need to be reversed/recoded: 24,25,26,27 11,12,13,24R,25R,26R, 27R, 33,34)-1)/4]*100 Missing data calculated if 7 or calculated if 4 or calculated if 5 or WE-CARE Scoring Page 4
Item number & Coding* Scale name followed by item descriptions Treatment Satisfaction (9 items) 3 I worry about complications of diabetes 28R How much flexibility in your daily activities does the insulin regimen give you? 29R How much flexibility in planning your social activities does the insulin regimen give you? 30R How much flexibility around mealtimes does the insulin regimen give you? 31R Overall, how satisfied are you with the insulin treatment being used? 32R I find the time it takes for each dosing acceptable. 35R I would recommend the current insulin regimen to others 36R I want my child to continue using the current insulin regimen 37R My child is compliant with the current insulin regimen WE-CARE TOTAL SCORE Calculation formula Recoding: 8 items need to be reversed/recoded (28, 29, 30, 31, 32, 35, 36, 37) [((Average of items 3,28R,29R, 30R, 31R, 32R, 35R, 36R, 37R)-1)/4]*100 Recoding: See above for item recoding [((Average all items listed under the psychosocial wellbeing, acceptance of insulin administration ease of use, and treatment satisfaction) 1)/4]*100 Missing data calculated if 5 or *R indicates that the item score needs to be reversed such that a higher score means greater (better) satisfaction or ease of use, etc WE-CARE Scoring Page 5