Ulrica Jonsson, doktorand
Kort om Ulricas forskning
Arbete: Läkare vid Habilitering Göteborg
Universitetsanknytning: Sahlgrenska Akademin, Göteborgs universitet
Forskningsprojekt: MMCU, a New Quality Registry and Follow-up Programmefor Adults with Myelomeningocele in Sweden och Differences between adults and children with cerebral palsy prevalence, subtypes and assiociated impairments.
"MMCU, a New Quality Registry and Follow-up Programmefor Adults with Myelomeningocele in Sweden" och "Differences between adults and children with cerebral palsy prevalence, subtypes and assiociated impairments."
MMCU, a New Quality Registry and Follow-up Programme for Adults with Myelomeningocele in Sweden
The survival of children with myelomeningocele (MMC) has increased dramatically in recent decades. However, MMC is still rare in adult health care and the competence and the multidisciplinary organisationneeded to provide good care for adults with MMC is often lacking. The mortality among adults with MMC has remained high, a third of hospitalizations resulting in death being caused by preventable conditions.
The high risk of complications due to hydrocephalus, cognitive impairment, neurogenic bladder and bowel dysfunction and loss of sensation require structured follow-up and early interventions to prevent unnecessary loss of function, morbidity and mortality.
To facilitate prevention a follow-up programmefor adults with MMC has been developed as a part of the Swedish national quality registry MMCUP (MyeloMeningoCeleUppföljnings-Program).
- To prevent complications and loss of function.
- To increase access to high quality health care.
A separate MMCUP programmefor adults has been created, based on available evidence and clinical experience. The programmeconsists of a yearly visit to a health professional who uses a structured survey form, provides care and referrals, and enters the data into the MMCUP register.
The survey form consists of 44 items including:
- living conditions
- assistance and assistive devices
- changes in symptoms or function
- bladder and bowel regimes
- cognitive function
- pressure ulcers
Because of the various ways the adult habilitation is organised across Sweden, the survey form is designed to be useable regardless of health profession or organisation.
An accompanying handbook provides directions on helping the patient to the appropriate caregiver. Clinical guidelines have also been developed and published on the MMCUP website www.mmcup.se
As of January 2019, 233 adults with MMC had been enrolled in the programme.
- Nationwide follow-up is a first step towards increasing health and survival in adulthood.
- The responsibility to arrange follow-up is transferred from the adults with MMC to the health care providers.
- Easy access to clinical guidelines will improve access to quality care.
- The MMCUP register will provide population based data that enables comparisons between different traditions of treatment and give directions for future research.
Differences between adults and children with cerebral palsy prevalence, subtypes and assiociated impairments.
A population-based study.
- Adults with cerebral palsy (CP) differ from children, in prevalence, subtype distribution and impairments.
- Individuals wih severe motor impairment, intellectual disability or epilepsy have had poorer survival.
- Spastic tetraplegia and dyskineticcpare less common in adults.
Cerebral palsy (CP) is a lifelong motor impairment caused by an early brain injury, affecting 2-3 per 1000 live births. Due to the lack of population-based research examining the adult CP population, prevalence data from studies of children with CP is often used to estimate prevalence and needs in the adult CP population.
To describe the prevalence of cerebral palsy (CP), subtype distribution, motor and intellectual impairment and epilepsy in adults with CP and compare with children with CP.
The CP-register of western Sweden has since 1954 registered all children with CP, who at the age of 4-8 years lived in western Sweden. The focus of the current study was the 5 oldest complete cohorts born 1959-1978. A census was conducted in 2017 to identify surviving adults.CP subtype and impairment data fromthe CP-register of western Sweden and population data from Statistics Sweden was used to compare surviving adults (n=581, 244 females, 337 males) born in 1959-1978, with the same cohorts as children (n=723, 307 females, 416 males), andwiththe most recent cohort, born in 2007-2010, (n=205, 84 females, 121 males). Descriptive statistics and the chi-square test for comparisons between groups was used. The significance level was set at p<0.05.
The prevalence of CP in adults born in 1959-1978 was 1.14 per 1000. The amount of impairments differed between CP subtypes. Motor and intellectual impairment were closely related, regardless of subtype. Subtype distribution among survivors differed from the original cohorts (p=0.002), and the most recent cohort (p<0.01), tetraplegia and dyskineticCP being less common in survivors. Severe motor impairment, intellectual disability and epilepsy were less common among survivors than in the original cohorts (p=0.004, p=0.002, p=0.037), and the most recent cohort, (p=0.004, p= 0.008 and p<0.01).
Tetraplegia, dyskineticCP, wheelchair ambulation in childhood, intellectual disability and epilepsy were less common among the surviving adults. The individuals with the most severe impairments have had poorer survival, even in recent decades. Data on prevalence, subtype distribution and impairments in children with CP can, according to our results, only provide an approximate description of adults with CP. Consequently, the extent of impairments and health issues in the population of adults with CP alive today is largely unknown. Population-based clinical studies of living conditions, impairments, and health issues in adults with CP are needed.
Ulrica Jonsson, Meta N Eek, Katharina S Sunnerhagen, Kate Himmelmann