Background
Methods
Measures
Process of instrument adaptation
Procedure of recruitment for the field survey of the YHC
Data analysis of the field survey of the YHC SUN
Results
Sample characteristics
Characteristics | nb
| %c
| |
---|---|---|---|
Age groups (mean: 19.4, Range: 15–25) | 15–17 years | 42 | 23.1 |
18–21 years | 93 | 51.1 | |
22–25 years | 46 | 25.3 | |
Gender | Female | 129 | 70.9 |
Male | 53 | 29.1 | |
Current occupation | Pupil | 74 | 40.7 |
Vocational Training | 26 | 14.3 | |
Student | 48 | 26.4 | |
Unemployed | 6 | 3.3 | |
Other | 10 | 5.5 | |
Employed | 18 | 9.9 | |
Highest level of education | Still attending school | 59 | 32.4 |
Certificate of special school | 3 | 1.6 | |
Certificate of secondary education | 13 | 7.1 | |
General certificate of secondary education | 41 | 22.5 | |
Final secondary-school examinations | 59 | 32.4 | |
Other certificate | 6 | 3.3 | |
Finished school without school leaving certificate | 1 | 0.5 | |
Treating physician | Pediatrician | 61 | 33.5 |
Practitioner for adults | 119 | 65.4 | |
Receiving care by a specialist for the condition | Yes | 156 | 85.7 |
No | 26 | 14.3 |
Diagnoses | Age mean | Age SD | Age range | Further information |
---|---|---|---|---|
Diabetes (n=45) | 18.5 | 2.4 | 16–25 | - mean duration of illness 7.7 [SD 5.2] ys |
- 20 (44 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 3.6 years ago. | ||||
Multiple sclerosis (n=33) | 20.5 | 2.3 | 16–25 | - mean duration of illness 2.0 [SD 1.5] ys |
- 2 (6 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 6.1 years ago | ||||
Chronic conditions associated with gastrointestinal symptoms (n=28) | 20.3 | 1.8 | 16–25 | - mean duration of illness 4.0 [SD 3.0] ys |
- 4 (14 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 4.0 years ago | ||||
Arthritis (n=19) | 17.7 | 1.5 | 16–21 | - mean duration of illness 7.4 [SD 5.5] ys |
- 11 (58 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 1.7 years ago | ||||
Chronic skin conditions (n=14) | 19.6 | 2.7 | 17–25 | - mean duration of illness 13.2 [SD 6.8] ys |
- 1 (7 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition 5.8 years ago | ||||
Pulmonary conditions (n=13) | 19.1 | 2.6 | 16–25 | - mean duration of illness 17.0 [SD 4.3] ys |
- 9 (69 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 1.3 years ago | ||||
Other rare chronic conditions (n=30) | 19.5 | 3.2 | 15–25 | - mean duration of illness 12.9 [SD 9.4] ys |
- 14 (47 %) in pediatric specialist care | ||||
- those who were in adult specialist services had made the transition on average 5.9 years ago |
Receipt of services (Module 1)
Diagnosis | ||||||||
---|---|---|---|---|---|---|---|---|
Unmet needs | Total | Diabetes | Multiple sclerosis | Conditions with gastro-intestinal symptoms | Arthritis | Chronic skin conditions | Pulmonary conditions | Other conditions |
% | % | % | % | % | % | % | % | |
Dietary counseling | 23.6 | 11.1 | 27.3 | 46.4 | 15.8 | 33.3 | 15.4 | 20.7 |
Health education | 22.5 | 11.1 | 30.3 | 35.7 | 0.0 | 53.3 | 23.1 | 17.2 |
Psychological counseling | 21.4 | 15.6 | 27.3 | 39.3 | 10.5 | 26.7 | 23.1 | 10.3 |
Health services at school/at work | 15.9 | 6.7 | 27.3 | 35.7 | 5.3 | 13.3 | 15.4 | 6.9 |
Self-help groups | 14.8 | 6.7 | 18.2 | 39.3 | 0.0 | 20.0 | 30.8 | 0.0 |
Coordination of services | 13.2 | 2.2 | 12.1 | 39.3 | 5.3 | 20.0 | 23.1 | 3.4 |
Physiotherapy | 12.1 | 6.7 | 21.2 | 17.9 | 0.0 | 13.3 | 15.4 | 10.3 |
Rehabilitation services | 11.5 | 2.2 | 21.2 | 17.9 | 5.3 | 6.7 | 23.1 | 10.3 |
Occupational therapy | 7.7 | 0.0 | 18.2 | 14.3 | 5.3 | 0.0 | 15.4 | 3.4 |
Telephone counseling | 7.7 | 0.0 | 6.1 | 21.4 | 5.3 | 20.0 | 0.0 | 6.9 |
Social worker services | 7.1 | 2.2 | 6.1 | 14.3 | 5.3 | 6.7 | 15.4 | 6.9 |
Short-term respite care | 3.8 | 0.0 | 3.0 | 3.6 | 0.0 | 13.3 | 7.7 | 6.9 |
Speech therapy | 3.3 | 0.0 | 6.1 | 3.6 | 0.0 | 0.0 | 15.4 | 3.4 |
Supply with physical aids | 2.7 | 0.0 | 9.1 | 0.0 | 10.5 | 0.0 | 0.0 | 0.0 |
Stomatherapy | 2.7 | 0.0 | 6.1 | 3.6 | 5.3 | 0.0 | 7.7 | 0.0 |
Nursing services at home | 2.2 | 0.0 | 3.0 | 3.6 | 0.0 | 0.0 | 7.7 | 3.4 |
Supply with medical equipment | 1.1 | 0.0 | 3.0 | 0.0 | 0.0 | 0.0 | 7.7 | 0.0 |
Unmet needs | Total | Attending pediatric specialist | Attending adult specialist | No specialist | Having a primary care physician | Having no primary care physician |
---|---|---|---|---|---|---|
% | % | % | % | % | % | |
Dietary counseling | 23.6 | 5.7 | 31.7 | 30.8 | 25.0 | 19.0 |
Health education | 22.5 | 5.7 | 29.7 | 26.9 | 17.9 | 38.1 |
Psychological counseling | 21.4 | 5.7 | 29.7 | 23.1 | 20.0 | 26.2 |
Health services at school/at work | 15.9 | 7.5 | 18.8 | 23.1 | 12.1 | 28.6 |
Self-help groups | 14.8 | 7.5 | 18.8 | 15.4 | 17.1 | 7.1 |
Coordination of services | 13.2 | 9.4 | 12.9 | 23.1 | 12.1 | 16.7 |
Physiotherapy | 12.1 | 5.7 | 15.8 | 11.5 | 12.1 | 11.9 |
Rehabilitation services | 11.5 | 9.4 | 14.9 | 3.8 | 11.4 | 11.9 |
Occupational therapy | 7.7 | 3.8 | 7.9 | 15.4 | 8.6 | 4.8 |
Telephone counseling | 7.7 | 0.0 | 10.9 | 7.7 | 7.1 | 9.5 |
Social worker services | 7.1 | 7.5 | 7.9 | 3.8 | 7.9 | 4.8 |
Short-term respite care | 3.8 | 1.9 | 5.0 | 3.8 | 3.6 | 4.8 |
Speech therapy | 3.3 | 1.9 | 4.0 | 3.8 | 2.1 | 7.1 |
Supply with physical aids | 2.7 | 0.0 | 4.0 | 3.8 | 2.9 | 2.4 |
Stoma therapy | 2.7 | 1.9 | 3.0 | 3.8 | 2.9 | 2.4 |
Nursing services at home | 2.2 | 1.9 | 2.0 | 3.8 | 2.1 | 2.4 |
Supply with medical equipment | 1.1 | 0.0 | 2.0 | 0.0 | 1.4 | 0.0 |
Satisfaction with care (Module 2)
Domain | No. of items | r II
| r IT
| r 2
| G | α |
---|---|---|---|---|---|---|
Diagnosis/Information | 5 | .33–.74 | .45–.76 | .31–.67 | .86 | .85 |
Coordination | 3 | .40–.62 | .50–.66 | .26–.46 | .75 | .75 |
Patient-centred care | 4 | .81–.88 | .88–.92 | .78–.84 | .96 | .96 |
Hospital environment | 5 | .20–.73 | .47–.73 | .28–61 | .86 | .80 |
Doctors’ behaviour | 5 | .58–.81 | .75–.87 | .62–.77 | .91 | .93 |
School related services | 3 | .68–.80 | .74–.84 | .56–.71 | .79 | .89 |
General satisfactiona
| 1 | -- | -- | -- | -- | -- |
Domain | No. of items | ANOVA reliability | Andrich’s reliability | Q-index | Item misfit | Misordered thresholds |
---|---|---|---|---|---|---|
Diagnosis/Information | 5 | .85 | .82 | .08–.15 | 0 | 0 |
Coordination | 3 | .87 | .85 | .02–.03 | 0 | 0 |
Patient-centred care | 4 | .93 | .93 | .01–.02 | 0 | 0 |
Clinic environment | 5 | .82 | .77 | .05–.14 | 0 | 0 |
Doctor’s behaviour | 5 | .90 | .89 | .03–.06 | 0 | 0 |
School related services | 3 | .85 | .82 | .02–.05 | 0 | 1 |
General satisfactiona
| 1 | --- | --- | --- | --- |
Diagnosis/information | Coordination | Patient-centred care | Clinic environment | Doctors’ behaviour | School related services | General satisfaction | ||
---|---|---|---|---|---|---|---|---|
Means (SD) | ||||||||
Age group | 15–17 years | 3.27 (1.03) | 3.20 (0.97) | 3.61 (1.24) | 3.04 (0.77) | 3.71 (1.01) | 2.39 (0.94) | 3.53 (0.92) |
18–21 years | 2.94 (1,00) | 2.80 (0.95) | 3.11 (1.24) | 2.90 (0.90) | 3.26 (1.11) | 2.52 (1.15) | 3.19 (0.91) | |
22–25 years | 2.62 (0.97) | 2.76 (1.04) | 3.12 (1.32) | 2.94 (1.07) | 3.04 (1.06) | 2.39 (1.06) | 2.87 (1.10) | |
Diagnosis | Diabetes | 3.50 (0.87) | 3.27 (0.75) | 3.75 (1.11) | 3.30 (0.75) | 3.78 (0.90) | 2.35 (1.10) | 3.62 (0.83) |
Multiple sclerosis | 2.59 (0.99) | 2.74 (1.00) | 2.98 (1.36) | 2.92 (1.07) | 3.06 (1.24) | 2.71 (1.27) | 2.93 (1.03) | |
Chronic conditions associated with gastrointestinal symptoms | 2.66 (0.99) | 2.62 (1.00) | 2.78 (1.14) | 2.89 (1.09) | 3.05 (1.12) | 2.33 (1.00) | 2.85 (1.01) | |
Arthritis | 3.36 (0.97) | 3.28 (0.90) | 3.50 (1.16) | 3.09 (0.87) | 3.81 (0.90) | 2.41 (0.88) | 3.53 (1.01) | |
Chronic skin conditions | 2.30 (0.87) | 1.92 (0.68) | 2.73 (1.42) | 2.40 (0.61) | 2.67 (1.13) | 2.03 (0.96) | 2.73 (0.90) | |
Pulmonary conditions | 2.85 (1.22) | 2.88 (1.17) | 3.25 (1.59) | 2.81 (0.91) | 3.35 (1.25) | 2.75 (1.33) | 3.58 (0.90) | |
Other rare chronic conditions | 2.78 (0.86) | 2.80 (1.04) | 3.10 (1.11) | 2.73 (0.73) | 3.08 (0.99) | 2.49 (0.93) | 2.88 (0.89) |
CHC-SUN domains | ||
---|---|---|
Satisfaction domains (Module 2) | Satisfaction with the specialist (Module 1 item) | Sum score of unmet needs (Module 1) |
Diagnosis/Information | .53 | -.53 |
Coordination | .62 | -.58 |
Patient-centered care | .70 | -.51 |
Clinic environment | .55 | -.37 |
Doctors’ behaviour | .72 | -.48 |
School related services | .23 | -.16 |
General satisfactiona
| .49 | -.44 |