Increasing symptoms, met and unmet needs in adults with cerebral palsy or meningomyelocele a longitudinal follow-up

Group A (n=42) 1997–1998Group B (n=30) 1997–1998Group A (n=28) 2009Group B (n=25) 2009Age in years, mean38265038CP38 (90.5%)19 (63%)25 (89%)15 (60%)MMC4 (9.5%)11 (37%)3 (11%)10 (40%)Gender n (%) Male22 (52%)18 (64%)15 (54%)16 (64%) Female20 (48%)12 (36%)13 (46%)9 (36%)Marital status n (%) Married13 (31%)2 (7%)11 (39%)5 (20%) Unmarried21 (50%)22 (73%)12 (43%)13 (52%) Divorced1 (2%)0 (0%)2 (7%)2 (8%) Cohabiting7 (17%)6 (20%)3 (11%)5 (20%)Children n (%) Children16 (38%)6 (20%)12 (43%)8 (32%) No children26 (62%)24 (80%)16 (57%)17 (68%)Work n (%) Full-time16 (38%)7 (23%)8 (28%)6 (24%) Part-time15 (36%)9 (30%)10 (36%)10 (40%) No work11 (26%)14 (47%)10 (36%)9 (36%)Contributions n (%) Disability pension (full-time)8 (19%)6 (20%)8 (28.5%)5 (20%) Disability pension (part-time)16 (38%)11 (37%)10 (36%)9 (36%) Other *contributions*3 (7%)9 (30%)2 (7%)4 (16%) No contributions15 (36%)4 (13%)8 (28.5%)7 (28%)Education n (%) Compulsory school10 (36%)1 (4%) Upper secondary school16 (57%)19 (76%) University degree2 (7%)5 (20%)Note. *Other contributions mean study contribution, social allowance or unemployment compensation.

A (N:55) 1983 Mean age 24 yrs CP N:52 MMC N:3A (N:42) 1997 Mean age 38 yrs CP N:39 MMC N:3B (N:30) 1998 Mean age 26 yrs CP N:19 MMC N:11A (N:28) 2009 Mean age 50 yrs CP N:25 MMC N:3B (N:25) 2009 Mean age 37 yrs CP N: 15 MMC N:10Wheelchair alwaysCP 25% (13)
MMC 33% (1)CP 26% (10)
MMC 33% (1)CP 26% (5)
MMC 36% (4)CP 36% (9)
MMC 67% (2)CP 20% (3)
MMC 60% (6)Wheelchair partlyCP 21% (11)
MMC 0% (0)CP 18% (7)
MMC 0% (0)CP 26% (5)
MMC 36% (4)CP 8% (2)
MMC 0% (0)CP 33% (5)
MMC 30% (3)No wheelchairCP 54% (28)
MMC 67% (2)CP 56% (22)
MMC 67% (2)CP 47% (9)
MMC 27% (3)CP 56% (14)
MMC 33% (1)CP 47% (7)
MMC 10% (1)Assistive devices alwaysCP 10% (5)
MMC 0% (0)CP 13% (5)
MMC 0% (0)CP 21% (4)
MMC 27% (3)CP 8% (2)
MMC 0% (0)CP 27% (4)
MMC 20% (2)Assistive devices partlyCP 23% (12)
MMC 0% (0)CP 18% (7)
MMC 33% (1)CP 16% (3)
MMC 27% (3)CP 24% (6)
MMC 33% (1)CP 20% (3)
MMC 20% (2)No assistive devicesCP 67% (35)
MMC 100% (3)CP 69% (27)
MMC 67% (2)CP 63% (12)
MMC 45% (5)CP 68% (17)
MMC 67% (2)CP 53% (8)
MMC 60% (6)

Information from 2009Group A CP N=25 (%)Group A MMC N=3 (%)Group B CP N=15 (%)Group B MMC N=10 (%)Practical assistance:Clean home16 (64%)3 (100%)10 (67%)9 (90%)Buy food13 (52%)1 (33%)7 (47%)7 (70%)Cook8 (32%)1 (33%)7 (47%)5 (50%)Hygiene8 (32%)1 (33%)5 (33%)2 (20%)Go to toilet6 (24%)1 (33%)3 (20%)2 (20%)Dress and undress8 (32%)1 (33%)7 (47%)3 (30%)Eat and drink5 (20%)0 (0%)4 (27%)0 (0%)Sufficient practical assistance*14 (78%)3 (100%)7 (87%)9 (100%)Caregivers:Families11 (44%)2 (67%)5 (33%)3 (30%)Transportation for the disabled15 (60%)1 (33%)6 (40%)7 (70%)Personal assistant6 (24%)1 (33%)4 (27%)1 (10%)Home care2 (8%)1 (33%)1 (7%)3 (30%)Special contact0 (0%)1 (33%)0 (0%)0 (0%)Neighbour0 (0%)0 (0%)1 (7%)0 (0%)Companion service1 (4%)0 (0%)1 (7%)0 (0%)Nursing staff0 (0%)0 (0%)0 (0%)1 (10%)Health care providers:Physical therapist11 (44%)1 (33%)2 (13%)4 (40%)Physician5 (20%)1 (33%)5 (33%)4 (40%)Occupational therapist2 (8%)2 (67%)0 (0%)2 (20%)Social worker3 (12%)0 (0%)1 (7%)1 (10%)Psychotherapist2 (8%)1 (33%)0 (0%)0 (0%)Project within employment services0 (0%)0 (0%)1 (7%)1 (10%)Clinical psychologist0 (0%)0 (0%)1 (7%)0 (0%)Speech therapist1 (4%)0 (0%)0 (0%)0 (0%)Audiologist0 (0%)0 (0%)1 (7%)0 (0%)Prosthetist and orthotist0 (0%)0 (0%)1 (7%)0 (0%)Job coach1 (4%)0 (%)0 (0%)0 (0%)Masseur0 (0%)0 (0%)0 (0%)1 (10%)Dietician1 (4%)0 (0%)0 (0%)0 (0%)No contact with health care professionals8 (32%)1 (33%)5 (33%)1 (10%)Not content with health care18 (72%)1 (33%)5 (33%)3 (30%)Note. *Percentage of those in need of practical help.