Table 2.
Characteristics of family members and individuals with PWS.
| Variable | ||
|---|---|---|
| n | % | |
| Family members | ||
| Sex | ||
| Female | 69 | 70.4 |
| Male | 29 | 29.6 |
| Nationality | ||
| The Netherlands | 88 | 89.8 |
| Belgium | 9 | 9.2 |
| Switzerland | 1 | 1.0 |
| Living with the PWS patient | ||
| Yes | 49 | 50.0 |
| No | 49 | 50.0 |
| Highest education completed with a diplomaa (corrected to Verhage code)b | ||
| No/special education (1) | 0 | - |
| Primary school (2) | 1 | 1.0 |
| Primary school and <2 years of low-level secondary school (3) | 0 | - |
| Low-level secondary school (4) | 1 | 1.0 |
| Average-level secondary school (5) | 11 | 11.3 |
| Average-level secondary school (5), High level secondary school (6) | 21 | 21.7 |
| High level secondary school (6) | 44 | 45.3 |
| University (7) | 19 | 19.6 |
| Paid job | 66 | 67.3 |
| Experienced PWS symptom severity over the last 2 weeks c | ||
| 0 | 2 | 2.3 |
| 1 | 6 | 9.3 |
| 2 | 5 | 5.8 |
| 3 | 6 | 7.0 |
| 4 | 6 | 7.0 |
| 5 | 13 | 15.1 |
| 6 | 8 | 9.3 |
| 7 | 6 | 7.0 |
| 8 | 19 | 22.1 |
| 9 | 12 | 14.0 |
| 10 | 3 | 3.5 |
| Individuals with PWS | ||
| Sex of the related PWS individual d | ||
| Female | 49 | 50.0 |
| Male | 49 | 50.0 |
| Living setting of the related PWS individual d | ||
| Care facility | 38 | 38.8 |
| No care facility | 60 | 61.2 |
a n = 97. b Responses on question 1.4b of the Dutch version of the Lancashire Quality of Life Profile (16, 17). For the corrections for level of education, we used a seven-point scale ranging from 1 (primary school not completed) to 7 (academic degree) according to the Dutch educational system (18). This scale is comparable to the International Standard Classification of Education [UNESCO, (19)]. c n = 86. Scores on a eleven-point Likert scale (0 = no symptoms at all, 10 = symptoms to a very serious extent). d n = 69.