Background
Methods
Stage 1: elaboration of the questionnaire
Stage 2: measurement properties of the instrument
Results
Patient characteristics | Value | Missing data |
---|---|---|
Age, years (range) | 60 (19 to 94) | 2 |
Female sex, no. (%) | 266 (53.1%) | 1 |
Marital status, no. (%): | 13 | |
Married | 216 (44.2%) | |
Live-in partner | 38 (7.8%) | |
Single/separated | 171 (35.0%) | |
Widowed | 64 (13.1%) | |
Highest education level, no. (%): | 44 | |
No diploma/primary school | 85 (18.6%) | |
Secondary/high school | 195 (42.6%) | |
College | 178 (38.9%) | |
Inpatient, no. (%) | 257 (51.2%) | |
Duration of disease, years (range) | 10 (0 to 91) | 33 |
Presence of daily symptoms, no. (%) | 300 (62.6%) | 23 |
Need for assistance, no. (%) | 132 (26.4%) | 2 |
Hospitalizations during the last 12 months, no. (%) | 0 (0 to 15) | 40 |
Medical appointments/month, no. (%) | 1 (0 to 30) | 16 |
Different physicians, no. (%) | 2 (0 to 10) | 18 |
Tablets/day, no. (%) | 4 (0 to 30) | 14 |
Drug intakes/day, no. (%) | 2 (0 to 6) | 26 |
Injections/day, no. (%) | 0 (0 to 8) | 78 |
Diet, no. (%) | 198 (40.3%) | 11 |
Physical therapy, no. (%) | 113 (22.9%) | 9 |
Oxygen therapy, no. (%) | 22 (4.4%) | 4 |
Need for a specific organization for daily care, no. (%) | 338 (67.3%) | |
Time needed to organize drugs/weeka
| 60 min (0 to 21 h) | |
Need for self-monitoring, no. (%) | 168 (33.47%) | |
Time needed for self-monitoring/weeka
| 60 min (0 to 12 h) | |
Presence of side effects, no. (%) | 168 (36.3%) | 39 |
Main chronic condition, no. (%): | 11 | |
Diabetes | 81 (16.5%) | |
Rheumatologic diseases | 59 (12.0%) | |
High blood pressure and dyslipidemia | 44 (9.0%) | |
Systemic diseases | 43 (8.8%) | |
Pulmonary diseases (other than asthma) | 40 (8.1%) | |
Heart diseases | 37 (7.5%) | |
Asthma | 37 (7.5%) | |
Cancers and hematological malignancy | 34 (6.9%) | |
HIV infection | 19 (3.9%) | |
Arterial or venous thrombosis | 17 (3.5%) | |
Other diseasesb
| 80 (16.3%) |
Item no. | Item |
---|---|
1A | The taste, shape or size of your tablets and/or the inconvenience caused by your injections (for example, pain, bleeding, scars) |
1B | The number of times you have to take your medication every day |
1C | The things you do to remind yourself to take your daily medication and/or to manage your treatment when you are not at home |
1D | The specific conditions when taking your medication (for example, taking it at a specific time of the day or meal, not being able to do certain things after taking them like driving or lying down) |
2A | Lab tests and other exams (frequency, time spent and inconvenience of these exams) |
2B | Self-monitoring (for example, taking your blood pressure or measuring your blood sugar yourself: frequency, time spent and inconvenience of this surveillance) |
2C | Doctors visits (frequency and time spent for the visits) |
2D | Arrange appointments and schedule doctors visits and lab tests |
3 | How would you rate the burden associated with taking care of paperwork from health insurance agencies, welfare organizations, hospitals and/or social care? |
4 | How would you rate the constraints associated with your diet (for example, not being allowed to eat certain foods)? |
5 | How would you rate the burden associated with the recommendations from your doctors to practice regular physical exercises? |
6 | What is the impact of your healthcare on your social relationships (for example, need for assistance, being ashamed to take your medication in front of people)? |
7 | 'Frequent healthcare reminds me of my health problems' |
Correlation with the Treatment Burden Questionnaire global scorea
|
Pvalue | |
---|---|---|
TSQM global score | -0.41 | < 0.0001 |
TSQM efficacy score | -0.26 | < 0.0001 |
TSQM convenience score | -0.53 | < 0.0001 |
TSQM side effects scorea
| -0.52 | < 0.0001 |
Correlation with the Treatment Burden Questionnaire global scorea
| No. (%) | Mean score |
Pvalue | |
---|---|---|---|---|
Correlation with treatment workload continuous variables | ||||
Number of hospitalizations during the last year | 0.24 | - | - | < 0.0001 |
Number of medical appointments/month | 0.28 | - | - | < 0.0001 |
Number of different physicians | 0.29 | - | - | < 0.0001 |
Total number of tablets/day | 0.25 | - | - | < 0.0001 |
Total number of injections/day | 0.31 | - | - | < 0.0001 |
Number of drug intakes/day | 0.16 | - | - | 0.0004 |
Time needed for healthcare per week (sum of the time needed for surveillance and the time needed to organize the treatment) | 0.4 | - | - | < 0.0001 |
Comparison between groups defined by treatment workload qualitative variables | ||||
Need for a specific organization for daily care: | ||||
Yes |
-
| 338 (67.3%) | 34.41 | |
No | 164 (32.7%) | 23.85 | < 0.0001 | |
Need for self-monitoring: | ||||
Yes |
-
| 168 (33.5%) | 41.24 | < 0.0001 |
No | 334 (66.5%) | 25.79 | ||
Diet: | ||||
Yes | - | 198 (40.3%) | 38.34 | < 0.0001 |
No | 293 (59.7%) | 26.01 | ||
Physical therapy: | ||||
Yes | - | 113 (22.9%) | 35.77 | |
No | 380 (77.1%) | 29.73 | 0.02 | |
Oxygen therapy: | ||||
Yes | - | 22 (4.4%) | 44.68 | |
No | 476 (94.8%) | 30.47 | 0.005 | |
Presence of side effects: | - | |||
Yes | 168 (36.3%) | 42.07 | < 0.0001 | |
No | 295 (63.7%) | 25.08 | ||
The patient considers treatment as efficient: | ||||
Yes | - | 317 (63.1%) | 27.35 | < 0.0001 |
No | 185 (36.8%) | 37.13 |
Characteristic | Whole sample (n = 502) | 'Low burden' (n = 240) | 'Moderate burden' (n = 140) | 'High burden' (n = 122) |
Pvalue |
---|---|---|---|---|---|
Global score | 30.1 ± 25.3 | 11.3 ± 9.2 | 34.6 ± 11.1 | 65.8 ± 18.1 | < 0.0001 |
Age, years | 59.3 ± 17.0 | 62.9 ± 16.1 | 59.2 ± 17.9 | 52.2 ± 15.6 | < 0.0001 |
Female sex, no. (%) | 266 | 118 (49.2%) | 78 (55.7%) | 70 (57.8%) | 0.23 |
Marital status | 0.19 | ||||
Married | 216 | 105 (45.3%) | 60 (43.5%) | 51 (42.9%) | |
Live in partner | 38 | 13 (5.6%) | 12 (8.7%) | 13 (10.9%) | |
Single/separated | 171 | 76 (32.8%) | 49 (35.5%) | 46 (38.7%) | |
Widowed | 64 | 38 (16.4%) | 17 (12.3%) | 9 (7.6%) | |
Highest education level, no. (%) | 0.76 | ||||
No diploma/primary school | 85 | 43 (19.9%) | 23 (17.6%) | 19 (17.1%) | |
Secondary/high school | 195 | 96 (44.4%) | 54 (41.2%) | 45 (40.5%) | |
College | 178 | 77 (35.6%) | 54 (41.2%) | 47 (42.3%) | |
Inpatient, no. (percentage of the whole sample) | 257 | 105 (43.7%) | 84 (60.0%) | 68 (55.7%) | 0.004 |
Duration of disease, years | 15.0 ± 15.4 | 16.3 ± 16.5 | 14.5 ± 16.7 | 13.3 ± 10.7 | 0.34 |
Presence of daily symptoms | 300 | 110 (48.0%) | 93 (70.4%) | 97 (82.2%) | < 0.0001 |
Need for assistance, no. (%) | 132 | 45 (18.8%) | 41 (29.3%) | 46 (38.0%) | 0.0003 |
Number of hospitalizations during the last 12 months | 1.1 ± 1.9 | 0.9 ± 1.8 | 1.2 ± 1.9 | 1.5 ± 2.1 | 0.0004 |
Number of medical appointments/month | 2.3 ± 3.4 | 1.5 ± 1.6 | 2.6 ± 3.3 | 3.6 ± 5.2 | < 0.0001 |
Number of different physicians | 2.4 ± 1.4 | 2.1 ± 1.3 | 2.4 ± 1.3 | 2.9 ± 1.4 | < 0.0001 |
Number of tablets/day | 5.4 ± 4.5 | 4.5 ± 4.1 | 5.7 ± 3.9 | 7.0 ± 5.5 | < 0.0001 |
Number of drug intakes/day | 1.9 ± 1.0 | 1.8 ± 1.0 | 2.0 ± 1.0 | 2.1 ± 1.1 | 0.07 |
Number of injections/day | 0.5 ± 1.3 | 0.2 ± 0.9 | 0.3 ± 0.9 | 1.3 ± 1.9 | < 0.0001 |
Diet, no. (%) | 198 | 75 (31.9%) | 57 (42.2%) | 66 (54.5%) | 0.0002 |
Physical therapy, no. (%) | 113 | 45 (19.2%) | 33 (23.9%) | 35 (28.9%) | 0.11 |
Oxygen therapy, no. (%) | 22 | 5 (2.1%) | 8 (5.7%) | 9 (7.4%) | 0.05 |
Time needed to organize drugs/week* | 22 ± 92 min | 17 ± 100 min | 13 ± 51 min | 43 ± 108 min | < 0.0001 |
Need for self-monitoring, no. (%) | 168 | 61 (25.4%) | 36 (25.7%) | 71 (58.2%) | < 0.0001 |
Time needed for self-monitoring/week* | 14 ± 66 min | 5 ± 31 min | 10 ± 67 min | 37 ± 101 min | < 0.0001 |
Presence of side effects, no. (%) | 168 | 46 (20.9%) | 56 (43.1%) | 66 (58.4%) | < 0.0001 |
Patient considers his treatment efficient, no. (%) | 317 | 176 (73.3%) | 74 (52.9%) | 67 (54.9%) | < 0.0001 |
Main chronic condition, no. (%) | < 0.0001 | ||||
Diabetes | 81 | 25 (10.7%) | 14 (10.1%) | 42 (35.0%) | |
Rheumatologic diseases | 59 | 25 (10.7%) | 21 (15.2%) | 13 (10.8%) | |
Pulmonary diseases (other than asthma) | 40 | 23 (9.9%) | 12 (8.7%) | 5 (4.2%) | |
High blood pressure and dyslipidemia | 44 | 29 (12.4%) | 9 (6.5%) | 6 (5.0%) | |
Asthma | 37 | 23 (9.9%) | 8 (5.8%) | 6 (5.0%) | |
Systemic diseases | 43 | 16 (6.9%) | 13 (9.4%) | 14 (11.7%) |