Care Planning in CdLS
Medical care
Individuals with CdLS require lifelong medical, multidisciplinary and social care. Access to clinical assessments, counselling and follow-up by a multidisciplinary team is likely to improve health care and increase quality of life. Barriers to accessing care have been recognised, and include health or behavioural complications, geographical isolation and financial considerations (85,186,187). Individuals with CdLS are now likely to live into adulthood and old age. This brings about the risk of individuals developing common chronic diseases alongside CdLS-related medical problems.
Individuals with CdLS are more likely to experience delayed treatment, to be hospitalised and to have more complications and longer admissions than individuals without CdLS. Often, this is due to a lack of knowledge regarding CdLS by healthcare providers, difficulties in obtaining medical history and, possibly, stigmatisation. Healthcare providers and social services should access information about CdLS. Syndrome sensitive, personalised care plans should be offered to every individual with CdLS and their caregivers. Individuals should also receive regular health checks, with planning of admissions and discharges made in advance. Procedure specific information booklets using simple language and photos can be very beneficial for individuals and their families and are recommended (188,189) (R66, R67).
Transition
In CdLS, the transition from paediatric (child) to adult medical care can bring about substantial challenges and require parental involvement (190). Transitions are usually associated with changes in daytime environment, leaving home and social changes. An individual’s care changes from family-focused to individual-focused.
Transition of care should be initiated at an early phase, with proper transfer of medical history and knowledge about the personal characteristics of the individual with CdLS. Transitions that are initiated too late can result in a gap in communication and co-ordination between paediatric and adult services.
Care can be improved by current and future health care providers jointly assessing individuals with CdLS in order to smooth the transition (109,191,192) (R68).
Decision making
The involvement of individuals with CdLS and their care providers in health-care decisions is essential. Intellectual disability and executive functioning impairments in individuals with CdLS can reduce an individual’s ability to make decisions. In these instances, care providers and health-care professionals have to decide what is best and document an individual’s values, preferences and quality of life (193).
Knowledge about CdLS is essential to manage expectations, and health-care providers and social services need to be aware of the needs and problems that may be expected. Family support groups and social media have proved to be extremely helpful for awareness of the needs and problems that individuals with CdLS can face (194,195). Guardianship rules vary among countries, and it is essential for guardianship to be determined and assigned before adulthood.
Care Planning in CdLS:
R66: Individuals with CdLS and their families need life-long care provided by healthcare providers and social services, who should educate themselves about CdLS.
R67: Syndrome-specific and personalised care plans through shared decision-making should be offered to every individual with CdLS and their caregivers.
R68: Transition of care should be initiated at an early phase, with proper transfer of medical history and knowledge about the personal characteristics of the individual with CdLS. It is recommended that current and future health care providers jointly evaluate individuals with CdLS in order to smooth the transition.
