ANDIAB2 2010: Quality Assurance of Patient Practices and Diabetes Centre Care

Quality of Life EQ-5D Assessment Data

Page last updated: 16 May 2012

An attempt was made to assess patient’s Quality of Life and their perceived Self-Assessed Own Health State Rating, based on the EQ-5D instrument developed by the EuroQol Group 2004 [with permission]. Individuals were asked to rate their own health status on a 0% [poor {or worst imaginable health state}] to 100% [excellent {or best imaginable health state}] scale, as was done in ANDIAB2 2005. Diabetes Centre staff then transcribed the results to the scannable form for that individual.

The Diabetes Distress Scale [DDS]6 was chosen to assess diabetes-related emotional distress. It is a validated 2 screening question, 17 item questionnaire. The DDS17 yields a total diabetes distress scale score plus 4 sub scale scores, each addressing a different kind of distress, these being: Emotional Burden; Physician-related Distress; Regimen-related Distress; Interpersonal Distress. A mean item score of 3 or higher (moderate distress) is considered as a level of distress worthy of clinical attention.

Sites were given the following instructions re the DDS and 3 options for scoring:

If EITHER Screening Question in ‘A’ is scored 3 or above the patient should complete the additional DDS 17 item questionnaire and computed score results should be entered in ‘B’ on the Data Field Definitions Form in the Quality of Life Assessment section.

HOW TO SCORE THE 17 Item DDS Questionnairex
There are 3 Options:

[1] Manually calculate the 5 required items using the SCORE SHEET PROVIDED;

[2] Utilise the DDS Calculator Tool provided. This is an application that you can save to your desktop, double click on the icon, and enter the 17 Individual Scores, then press the ‘Calculate’ button;

[3] Log onto the Diabetes Centre Website [Bankstown-Lidcombe Hospital] Bankstown-Lidcombe Hospital Diabetes Centre Click on Diabetes Distress Scale on the left; Enter the 17 Individual Scores, then press the ‘Calculate’ button.

NOTE
[a] You should ONLY CALCULATE THE TOTAL DDS SCORE if 14 or more questions have been answered [and the Calculators [2]&[3] above will only work], when 14 or more answers are entered.
[b] You should NOT CALCULATE ANY OF THE OTHER 4 ITEMS if more than one item in that section has not been answered [and the Calculators [2]&[3] above will NOT work for the individual items when 2 or more items are missing].


Once DDS Scores had been calculated, Diabetes Centre staff then transcribed the results to the scannable form for that individual.

Regarding [2] & [3] above we developed, tested and implemented a DDS Calculator to automate the scoring of the DDS and its sub scales in ANDIAB2. This was submitted and accepted as a Poster presentation at the ADEA ASM, see Discussion > Figure 2.

[See Appendices > Self-Assessment of Health Status For, Distress Data Questionnaire for the Self-Assessment of Health Status Form, the full DDS17 Questionnaire and the DDS Scoring Sheet ].

Assessments of ‘Own Health Status’ were collated and are reported by: Diabetes Type and Age Group; with DiabCo$t7 data provided [with permission] for comparison; and for Type 2 diabetes by diabetes management method. Diabetes Distress Scale scores are presented as Screening, Total and Sub scale scores by Diabetes Type and by aspects of Screening Question responses. The findings are summarised in Tables 12, 12[a]-[d], 13, 14, and 14[a]-[b].

Firstly, as shown in Table 12, individuals rated their ‘Own Health Status’ as a mean + SD of 63.1 + 20.5% [on the 0 to 100% scale], with reasonably similar findings irrespective of Diabetes Type {65.6% T1 DM : 62.0% T2 DM : 64.0% GDM [n= 508, 1266 and 43 respectively]}.

These results were all lower than those reported in ANDIAB2 2005.

Table 12 EQ-5D Own Health Rating

2005 n = 1405

Category
Mean SD
N
Own Health Rating - All
69.7 21.3
1367
Own Health Rating - Type 1
71.0 21.5
208
Own Health Rating - Type 2
69.6 20.7
1046
Own Health Rating - GDM
69.2 28.8
84
Table 12 EQ-5D Own Health Rating continued...

2010 n = 2131

Category
Mean SD
N
Own Health Rating - All
63.1 20.5
1849
Own Health Rating - Type 1
65.6 19.2
508
Own Health Rating - Type 2
62.0 21.1
1273
Own Health Rating - GDM
64.0 17.8
43

'Own Health Status’ assessments were analysed by Diabetes Type and Age Group - Table 12[a].

Table 12[a] EQ-5D Own Health Rating by Age Group and Diabetes Type 2005 n = 1405

ALL

Age
Mean SD
N
5-15
84.7 17.4
7
16-35
72.8 21.8
193
36-50
64.6 23.5
245
51-65
67.9 21.0
489
66+
73.2 19.0
401

Type 1

Age
Mean SD
N
5-15
84.7 17.4
7
16-35
75.4 17.0
99
36-50
61.7 23.2
55
51-65
67.3 25.1
37
66+
80.4 17.2
12

Type 2

Age
Mean SD
N
5-15
0
16-35
67.8 23.0
33
36-50
65.8 22.4
172
51-65
68.0 20.8
454
66+
73.0 19.1
392

Table 12[a] EQ-5D Own Health Rating by Age Group and Diabetes Type 2010 n = 2131

ALL

Age
Mean SD
N
5-15
78.4 19.8
21
16-35
64.8 19.7
321
36-50
60.5 20.0
353
51-65
61.8 20.6
639
66+
64.6 21.1
502

Type 1

Age
Mean SD
N
5-15
78.4 19.8
28
16-35
65.8 19.1
272
36-50
62.5 19.4
145
51-65
67.5 17.9
112
66+
62.7 19.8
26

Type 2

Age
Mean SD
N
5-15
0
16-35
58.4 23.9
40
36-50
59.0 20.5
237
51-65
60.9 20.9
606
66+
64.6 21.2
542

DiabCo$t7 are data provided for comparison - Table 12[b]. The DiabCo$t visual analogue scale was 0-1 [ours 0-100], thus a DiabCo$t score of 0.76 equates to 76% on our assessment scales. These results were all lower than those reported in DiabCo$t.

Table 12[b] DiabCo$t Own Health Rating by Age Group and Diabetes Type Overall Quality of Life by Age Group

Quality of Life Score

Age
General Population *
DiabCo$t Type 1
DiabCo$t Type 2
5-15
-
0.84
-
16-35
0.92
0.76
-
36-50
0.88
0.77
0.83
51-65
0.84
0.74
0.80
66+
0.79
0.70
0.78
* Hawthorne et al, 20018

Also presented for interest are the DiabCo$t data for Type 1 diabetes by complication status (for which we do NOT have comparative results) - Table 12[c].

Table 12[c] DiabCo$t Own Health Rating Type 1 DM by Complications

EQ-5D scores

No complications
Microvascular complications
Macrovascular complications
Both
Number of respondents evaluable
1727
249
16
83
Index Mean (SD)
0.90 (0.17)
0.73 (0.28)
0.68 (0.40)
0.65 (0.36)

Assessment of ‘Own Health Status’ are reported for Type 2 diabetes by diabetes management method - Table 12[d]. These results were all lower than those reported in ANDIAB2 2005.

Table 12[d] EQ-5D Own Health Rating Type 2 DM by Management Method

2005 n = 1405 Type 2

Diabetes Management
Method
Mean SD
n
Diet Only
74.4 20.8
194
Tablets
70.0 18.9
500
Insulin
68.3 22.0
131
Insulin and Tablets
65.2 22.6
239
Nil
0
Table 12[d] EQ-5D Own Health Rating Type 2 DM by Management Method continued...

2010 n = 2131 Type 2

Diabetes Management
Method
Mean SD
n
Diet Only
66.4 23.2
121
Tablets
63.5 21.0
534
Insulin
57.7 20.5
230
Insulin and Tablets
61.2 20.8
541
Nil
60.0 14.1
3

Diabetes Distress Scale [DDS] scores are presented as Screening, Total and Sub scale scores by Diabetes Type and by aspects of Screening Question responses - Tables 13, 14 and 14[a].

Table 13 DDS Screening Question Mean Scores by Diabetes Type

2005 n = 1405

Category
Mean SD
n
Screening Scale Q1 - All
Not collected in 2005
Screening Scale Q1 - Type 1
Not collected in 2005
Screening Scale Q1 - Type 2
Not collected in 2005
Screening Scale Q1 - GDM
Not collected in 2005
Screening Scale Q2 - All
Not collected in 2005
Screening Scale Q2 - Type 1
Not collected in 2005
Screening Scale Q2 - Type 2
Not collected in 2005
Screening Scale Q2 - GDM
Not collected in 2005
Table 13 DDS Screening Question Mean Scores by Diabetes Type continued...

2010 n = 2131

Category
Mean SD
n
n >=3
%
Screening Scale Q1 - All
2.2 1.3
1874
628
33.5%
Screening Scale Q1 - Type 1
2.3 1.2
512
193
37.7%
Screening Scale Q1 - Type 2
2.1 1.3
1287
410
31.9%
Screening Scale Q1 - GDM
2.0 1.1
49
16
32.7%
Screening Scale Q2 - All
2.3 1.4
1873
625
33.4%
Screening Scale Q2 - Type 1
2.4 1.3
511
201
39.3%
Screening Scale Q2 - Type 2
2.2 1.4
1287
407
31.6%
Screening Scale Q2 - GDM
1.8 1.0
49
9
18.4%

Table 14 DDS Question Mean Total & Sub-scale Scores by Diabetes Type

2005 n = 1405

Category
Mean SD / %
n
DDS 17 Questionnaire Done
Diabetes Distress Scale Not
Collected in 2005
Total DDS Score - All
Total DDS Score - Type 1
Total DDS Score - Type 2
Total DDS Score - GDM
Emotional Burden - All
Emotional Burden - Type 1
Emotional Burden - Type 2
Emotional Burden - GDM
Physician-related Distress - All
Physician-related Distress - Type 1
Physician-related Distress - Type 2
Physician-related Distress - GDM
Regimen-related Distress - All
Regimen-related Distress - Type 1
Regimen-related Distress - Type 2
Regimen-related Distress - GDM
Interpersonal Distress - All
Interpersonal Distress - Type 1
Interpersonal Distress - Type 2
Interpersonal Distress - GDM
Table 14 DDS Question Mean Total & Sub-scale Scores by Diabetes Type continued...

2010 n = 2131

Category
Mean SD / %
n
DDS 17 Questionnaire Done
50.4%
1073
Total DDS Score - All
2.0 0.9
1060
Total DDS Score - Type 1
2.0 0.7
334
Total DDS Score - Type 2
2.0 0.9
681
Total DDS Score - GDM
1.4 0.5
29
Emotional Burden - All
2.4 1.2
1061
Emotional Burden - Type 1
2.4 1.1
335
Emotional Burden - Type 2
2.4 1.2
681
Emotional Burden - GDM
1.7 0.8
29
Physician-related Distress - All
1.5 0.9
1060
Physician-related Distress - Type 1
1.4 0.7
334
Physician-related Distress - Type 2
1.6 1.0
681
Physician-related Distress - GDM
1.1 0.4
29
Regimen-related Distress - All
2.2 1.1
1061
Regimen-related Distress - Type 1
2.3 1.0
335
Regimen-related Distress - Type 2
2.2 1.2
681
Regimen-related Distress - GDM
1.6 0.8
29
Interpersonal Distress - All
1.8 1.1
1059
Interpersonal Distress - Type 1
1.7 0.9
335
Interpersonal Distress - Type 2
1.8 1.2
679
Interpersonal Distress - GDM
1.3 0.6
29
Regarding aspects of Screening Question responses - Tables 14[a], almost 40% of DDS 17 Questionnaires were undertaken in individuals who ‘screened negative’ [ie both Screening questions < 3].
A number [n=183], representing 22.3% of those who screened positive, did NOT have a DDS 17 Questionnaire administered.
Those where Individual DDS Scores were ≥ 3 were far more likely seen where the one or both Screening questions were scored ≥ 3 n= 397 versus n= 44 for Screening questions scored < 3. This was explored further in Table 14[b] for individuals 17 years and older.

Table 14[a] DDS 17 Questionnaire Data by Screening Question Score

2005 n = 1405

Category
%
n
DDS 17 Questionnaire Done
Not Collected
Screening questions = 3 and DDS
17 Questionnaire Done
Not Collected
Screening questions < 3 and DDS
17 Questionnaire Done
Not Collected
Screening questions both Null and
DDS 17 Questionnaire Done
Not Collected
Screening questions = 3 and DDS
17 Questionnaire NOT Done
Not Collected
Individual DDS Scores = 3 where
Screening questions = 3
Not Collected
Individual DDS Scores = 3 where
both Screening questions < 3
Not Collected

2010 n = 2131

Category
%
n
DDS 17 Questionnaire Done
49.8%
1061
Screening questions = 3 and DDS
17 Questionnaire Done
60.1%
638
Screening questions < 3 and DDS
17 Questionnaire Done
39.4%
418
Screening questions both Null and
DDS 17 Questionnaire Done
0.5%
5
Screening questions = 3 and DDS
17 Questionnaire NOT Done
22.3%
183
Individual DDS Scores = 3 where
Screening questions = 3
48.4%
397
Individual DDS Scores = 3 where
both Screening questions < 3
4.2%
44

We also assessed DDS Data for those >17 years old [n=1030 of the 1061 total received]. Of these, there were 60.8% [n=626] where one or both DDS Screening questions was > 3 and 39.2% [n=404] where the DDS Screening Questions were both <3 but the 17 item Questionnaire was done anyway. This seems to have been a function of how some sites administered the overall survey – perhaps giving ‘everything’ to the patient to complete.

NOTE: Age > 17 years old was chosen arbitrarily to exclude younger individuals where a parent or guardian may have completed or assisted in completion of the DDS Questionnaire

We sought to compare the outcomes based on the 2 Screening Question findings. We found few individuals would be ‘missed’ if NOT screened on the basis of both Screening Questions being <3 – Table 14[b]. In Table 14[c], data for the 626 are assessed by Age Groups.

Table 14[b] DDS Sub-scale Scores >3 by Screening Questions >3 versus <3

Total
Interpersonal
Regimen
Physician
Emotional
626 Screening Questions
1 or 2 Score > 3
135
148
228
77
273
404 Screening Questions
BOTH Score < 3
3
19
7
15
11

Table 14[c] DDS Sub-scale Scores >3 by Screening Question >3 by Age Group

Age Group (years)
N=
Total [%]
Interpersonal
Regimen
Physician
Emotional
17-35
127
13 [10.2]
49
48
7
17
36-50
137
39 [28.5]
75
61
19
37
51-65
243
66 [27.1]
110
90
40
75
66+
119
17 [14.3]
39
29
11
19

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