Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden
Abstract
:1. Introduction
1.1. Objectives
- To develop a questionnaire so that patients' abilities and their judgments of diabetes care can be measured on a scale suitable for detecting and quantifying change.
- To describe a Swedish diabetes patient sample in terms of their abilities and judgments together with registry data on their risk factors, and to study associations between different patient abilities, judgments and risk factors.
- To characterize groups of patients with low abilities, low judgments, or high risk factor levels; namely, groups with a need for improvement. The intention here was to illustrate how the questionnaire can be used in practice, and to see what groups could be identified using ad hoc levels of abilities, judgments, or risk factors. In practice, detecting such patients might trigger some kind of response in the form of an intervention. In the following, we refer to these levels as ad hoc response levels.
1.2. Previous Work
2. Methods
- Diabetes self-management or self-care ability (items 1–4): the patients are able to manage their diabetes treatment, or take any other necessary actions, by themselves. Patients with a good ability should be less limited by diabetes, and thus be more able to live the life they desire. This is an important determinant of diabetes-related quality of life [10,11,21,22]. Poor self-management has also been found to be associated with depression [23,24].
- Ability to carry out daily activities such as social activities (items 29–30) and work-related activities (items 26–28). A good ability indicates a well-functioning patient who has overcome any limitations imposed by the disease, which is an important determinant of good health-related quality of life [25,26,27,28]. Further, the ability to carry out work-related activities is a determinant of costs from a societal perspective as it affects costs of lost production due to illness [29].
- The quality of the service provided (items 9–10, 19–22); for example, did the staff give the patient a good reception? Did they understand the patient's situation? This would affect the patient’s confidence in healthcare and their compliance to treatment and lifestyle advice. Good communication should also make healthcare receptive to the individual needs of the patient.
- The quality of the information given by the staff (items 11–14). The visit to healthcare should be an important source of diabetes-related information for the patient. Poorly informed patients may do worse, as described above.
- Access to physicians and nurses (items 5–8). Is it easy for the patients to get an appointment with their physician or diabetes nurse when they wish? A timely response to any problem that occurs should be beneficial for the patient.
- Involvement in decisions regarding diabetes care (items 15–18), for example regarding medical treatment or diabetes self-care. This should build up the patient’s confidence in healthcare and could be a cornerstone of developing their self-management ability.
2.1. Patient Questionnaire
2.2. IRT Model
2.3. Methods for Analyzing Outcome Measures
3. Material
Main Study Sample | Validation Sample | |||
---|---|---|---|---|
Type 1 diabetes | Type 2 diabetes | Type 1 diabetes | Type 2 diabetes | |
Age, years | 49 (15, 18–80) | 66 (10, 21–80) | 50 (16, 18–90) | 66 (12, 21–95) |
Age at diagnosis, years | 25 (16, 0–76) | 56 (11, 5–79) | 26 (17, 0–81) | 54 (14, 5–89) |
Diabetes duration, years | 24 (15, 0–66) | 10 (8, 0–54) | 24 (15, 0–71) | 12 (10, 0–71) |
Male / female | 50% / 50% | 56% / 44% | 50% / 50% | 57% / 43% |
HbA1c, mmol/mol | 63 (14, 32–136) | 55 (14, 26–139) | 63 (13, 27–124) | 58 (14, 28–133) |
Systolic blood pressure, mmHg | 128 (15, 90–185) | 137 (17, 85–210) | 127 (16, 85–200) | 134 (16, 80–206) |
LDL cholesterol, mmol/l | 2.5 (0.8, 0.7–5.2) | 2.6 (0.9, 0.5–6.6) | 2.7 (0.7, 0.5–6.2) | 2.6 (0.9, 0.5–6.2) |
Number of patients | 1 124 | 1 792 | 1 656 | 1 431 |
4. Results
4.1. IRT Scales
- Self-Management Skills (items 1,2): the patient's ability to self-manage diabetes.
- Self-Management Ability (3,4): the patient's emotional ability to cope with diabetes.
- Sense of Security (24, 25): the patient’s lack of worries related to diabetes comorbidities.
- Social Activities (29, 30): the patient’s ability to carry out social activities.
- Work Activities (26–28): the patient’s ability to carry out work-related activities.
- Access (5–8): the patient’s experience of access to healthcare staff.
- Service & Information (9–14, 19–22): the patient’s experience of healthcare service and information provided.
- Involvement (15–18): the patient’s judgment of how well they could participate in decisions regarding diabetes treatment and care.
4.2. Patient Abilities and Judgments, EQ-5D Index, and Some Determinants
4.3. Analysis of Ad Hoc Response Levels
S-M Skills | S-M Ability | Sense of Security | Social Activities | Work Activities | Access | Service & Infomation | Involvement | HbA1c | LDL | SBP | EQ-5D Index | |
---|---|---|---|---|---|---|---|---|---|---|---|---|
(a) Type 1 diabetes. | ||||||||||||
S-M Skills | 1.00 * | |||||||||||
S-M Ability | 0.60 * | 1.00 * | ||||||||||
Sense of Security | 0.33 * | 0.48 * | 1.00 * | |||||||||
Social Activities | 0.30 * | 0.43 * | 0.48 * | 1.00 * | ||||||||
Work Activities | 0.26 * | 0.40 * | 0.43 * | 0.62 * | 1.00 * | |||||||
Access | 0.18 * | 0.32 * | 0.25 * | 0.14 * | 0.12 | 1.00 * | ||||||
0.37 * | 0.41 * | 0.32 * | 0.27 * | 0.21 * | 0.55 * | 1.00 * | ||||||
Involvement | 0.44 * | 0.39 * | 0.27 * | 0.25 * | 0.19 * | 0.41 * | 0.70 * | 1.00 * | ||||
HbA1c | −0.17 * | −0.26 * | −0.11 | −0.08 | −0.08 | −0.10 | −0.06 | −0.09 | 1.00 * | |||
LDL | −0.02 | −0.02 | −0.03 | −0.07 | −0.08 | −0.04 | −0.02 | −0.00 | 0.13 * | 1.00 * | ||
SBP | 0.06 | 0.13 * | 0.06 | 0.04 | 0.05 | −0.00 | 0.02 | 0.04 | 0.04 | 0.04 | 1.00 * | |
EQ-5D Index | 0.21 * | 0.34 * | 0.37 * | 0.06 | 0.14 * | 0.13 * | 0.42 * | 0.38 * | −0.13 * | −0.04 | −0.09 | 1.00 * |
(b) Type 2 diabetes. | ||||||||||||
S-M Skills | 1.00 * | |||||||||||
S-M Ability | 0.73 * | 1.00 * | ||||||||||
Sense of Security | 0.40 * | 0.49 * | 1.00 * | |||||||||
Social Activities | 0.36 * | 0.46 * | 0.54 * | 1.00 * | ||||||||
Work Activities | 0.33 * | 0.42 * | 0.48 * | 0.73 * | 1.00 * | |||||||
Access | 0.38 * | 0.44 * | 0.33 * | 0.26 * | 0.28 * | 1.00 * | ||||||
0.47 * | 0.51 * | 0.34 * | 0.32 * | 0.32 * | 0.68 * | 1.00 * | ||||||
Involvement | 0.51 * | 0.49 * | 0.31 * | 0.28 * | 0.27 * | 0.58 * | 0.76 * | 1.00 * | ||||
HbA1c | −0.10 * | −0.11 * | −0.14 * | −0.04 | −0.04 | −0.03 | −0.15 * | −0.11 | 1.00 * | |||
LDL | −0.03 | −0.04 | 0.01 | −0.02 | −0.04 | −0.00 | 0.01 | 0.06 | −0.04 | 1.00 * | ||
SBP | 0.06 | 0.08 | 0.06 | 0.05 | 0.02 | −0.00 | 0.03 | −0.01 | 0.08 | 0.06 | 1.00 * | |
EQ-5D Index | 0.24 * | 0.32 * | 0.31 * | 0.24 * | 0.22 * | 0.20 * | 0.42 * | 0.49 * | −0.06 | 0.04 | 0.06 | 1.00 * |
5. Discussion
6. Conclusions
Acknowledgements
Author Contributions
Conflicts of Interest
References
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Appendix
A1. IRT Analysis
Scale | N | No of Items | RMSEA | RMSEA (90% CI) |
---|---|---|---|---|
Type 1 diabetes | ||||
Self-Management Skills | 1119 | 2 | 0.066 | (0.052, 0.079) |
Self-Management Ability | 1110 | 2 | 0.064 | (0.050, 0.078) |
Sense of Security | 1113 | 2 | 0.062 | (0.047, 0.075) |
Social Activities | 1110 | 2 | 0.062 | (0.048, 0.076) |
Work Activities | 756 | 3 | 0.452 | (0.444, 0.461) |
Access | 1073 | 2 | 0.063 | (0.048, 0.076) |
Service & Information | 1102 | 5 | 0.049 | (0.044, 0.053) |
Involvement | 1098 | 2 | 0.077 | (0.063, 0.090) |
Type 2 diabetes | ||||
Self-Management Skills | 1763 | 2 | 0.102 | (0.091, 0.112) |
Self-Management Ability | 1759 | 2 | 0.092 | (0.081, 0.103) |
Sense of Security | 1765 | 2 | 0.055 | (0.043, 0.065) |
Social Activities | 1760 | 2 | 0.079 | (0.068, 0.089) |
Work Activities | 690 | 3 | 0.893 | (0.884, 0.902) |
Access | 1728 | 2 | 0.064 | (0.053, 0.075) |
Service & Information | 1726 | 5 | 0.056 | (0.052, 0.059) |
Involvement | 1696 | 2 | 0.085 | (0.074, 0.095) |
A2. Validation of Scales
Type 1 Diabetes | Type 2 Diabetes | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|
Scale | Item | Di | Ei1 | Ei2 | Ei3 | Ei4 | Di | Ei1 | Ei2 | Ei3 | Ei4 |
SM 1 | 1 | 4.617 | −2.654 | −2.045 | −1.173 | 0.153 | 4.248 | −2.536 | −1.799 | −0.736 | 0.385 |
2 | 4.617 | −2.612 | −2.029 | −1.126 | 0.257 | 4.248 | −2.398 | −1.780 | −0.756 | 0.390 | |
SM 2 | 3 | 1.977 | −2.718 | −1.764 | −0.624 | 0.614 | 2.370 | −2.674 | −1.777 | −0.781 | 0.362 |
4 | 1.977 | −3.134 | −1.859 | −0.389 | 1.008 | 2.370 | −2.683 | −1.811 | −0.771 | 0.424 | |
SS | 24 | 1.917 | −2.456 | −1.347 | −0.253 | 1.071 | 4.826 | −2.218 | −1.595 | −0.887 | −0.094 |
25 | 1.917 | −1.974 | −0.956 | 0.066 | 1.551 | 1.621 | −2.444 | −1.402 | −0.356 | 0.843 | |
SA | 29 | 2.913 | −1.773 | −1.024 | −0.228 | 0.889 | 4.534 | −1.717 | −1.026 | −0.464 | 0.257 |
30 | 4.604 | −1.901 | −1.172 | −0.565 | 0.280 | 4.534 | −1.846 | −1.050 | −0.522 | 0.057 | |
WA | 26 | 3.078 | −2.078 | −1.397 | −0.694 | 0.223 | 3.497 | −2.256 | −1.483 | −0.888 | −0.262 |
27 | 4.969 | −2.322 | −1.682 | −1.080 | −0.317 | 5.037 | −2.455 | −1.653 | −1.053 | −0.500 | |
28 | 3.783 | −2.272 | −1.462 | −0.891 | −0.108 | 5.006 | −2.473 | −1.564 | −1.012 | −0.372 | |
A * | 5&6 | 3.045 | −1.691 | −0.974 | −0.041 | 0.789 | 3.794 | −1.664 | −1.025 | −0.333 | 0.421 |
7&8 | 3.045 | −1.649 | −1.000 | −0.096 | 1.009 | 3.794 | −1.703 | −1.139 | −0.337 | 0.508 | |
SI * | 9&10 | 3.645 | −2.361 | −1.607 | −0.877 | −0.076 | 3.740 | −2.434 | −1.742 | −0.978 | −0.202 |
11&12 | 2.938 | −2.865 | −1.988 | −1.104 | −0.201 | 3.697 | −2.355 | −1.677 | −1.024 | −0.206 | |
13&14 | 3.390 | −2.318 | −1.693 | −0.819 | 0.075 | 3.070 | −2.207 | −1.613 | −0.861 | 0.089 | |
19&20 | 4.692 | −2.434 | −1.853 | −1.221 | −0.597 | 4.360 | −2.414 | −1.869 | −1.217 | −0.556 | |
21&22 | 4.910 | −2.169 | −1.686 | −1.046 | −0.226 | 4.927 | −2.210 | −1.750 | −1.035 | −0.252 | |
I* | 15&16 | 4.617 | −2.445 | −1.795 | −1.036 | −0.142 | 4.597 | −1.773 | −1.254 | −0.568 | 0.267 |
17&18 | 4.617 | −2.354 | −1.698 | −0.989 | −0.027 | 4.597 | −1.634 | −1.174 | −0.529 | 0.292 |
Scale | Type 1 Diabetes | Type 2 Diabetes | ||||
---|---|---|---|---|---|---|
Correlation | Difference *, Mean (SD) | Correlation | Difference *, Mean (SD) | |||
Self-Management Skills | 1.00 | −1.4 | (1.6) | 1.00 | 0.2 | (0.6) |
Self-Management Ability | 1.00 | −0.5 | (0.5) | 0.96 | 0.1 | (6.2) |
Sense of Security | 1.00 | −0.6 | (0.7) | 1.00 | −1.2 | (1.0) |
Social Activities | 0.99 | 0.5 | (3.2) | 1.00 | 0.6 | (0.8) |
Work Activities | 1.00 | −0.7 | (1.0) | 0.93 | 7.4 | (6.1) |
Access | 0.97 | −1.6 | (6.1) | 1.00 | 0.6 | (1.0) |
Service & Information | 0.99 | −0.7 | (3.4) | 0.99 | −0.3 | (2.9) |
Involvement | 1.00 | 0.5 | (1.1) | 1.00 | 0.1 | (0.7) |
A3. Discussion of the Scales
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Borg, S.; Palaszewski, B.; Gerdtham, U.-G.; Fredrik, Ö.; Roos, P.; Gudbjörnsdottir, S. Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden. Int. J. Environ. Res. Public Health 2014, 11, 12223-12246. https://doi.org/10.3390/ijerph111212223
Borg S, Palaszewski B, Gerdtham U-G, Fredrik Ö, Roos P, Gudbjörnsdottir S. Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden. International Journal of Environmental Research and Public Health. 2014; 11(12):12223-12246. https://doi.org/10.3390/ijerph111212223
Chicago/Turabian StyleBorg, Sixten, Bo Palaszewski, Ulf-G Gerdtham, Ödegaard Fredrik, Pontus Roos, and Soffia Gudbjörnsdottir. 2014. "Patient-Reported Outcome Measures and Risk Factors in a Quality Registry: A Basis for More Patient-Centered Diabetes Care in Sweden" International Journal of Environmental Research and Public Health 11, no. 12: 12223-12246. https://doi.org/10.3390/ijerph111212223