Background: Intellectual developmental disorder or Intellectual disability (ID) is a prevalent condition with a high impact along the life-span particularly when associated to other mental disorders (MD).
Specific aim: To estimate the unmet needs and to design a knowledge to action plan to reduce the care gap in ID-MD in Spain.
Method: We followed a 5-step `maxi' impact assessment and a mixed qualitative/quantitative design including expert panels, secondary analysis of databases and a prospective survey in the 17 regions in Spain. Schizophrenia was used as comparator due to similar prevalence rates and burden.
Results: Persons with ID-MD had ten times less outpatient contacts and hospital admissions than patients with schizophrenia. The outpatient case load was 2.31% in ID and 14.6% in schizophrenia. ID had the lowest hospitalization rate amongst all mental disorders but the highest length of stay. The expert panel estimated that half of persons with ID-MD are not adequately assessed and 95% do not receive the required care in Spain. Basic care needs include 6.5 beds and an ID-MD outpatient service per 1 million population. At least 134 specialized psychiatrists and psychologists and 277 beds are needed to reach the minimum standards in Spain.
Conclusion: This study quantifies the ID-MD care gap in Spain and the basic specialized services needed. In spite of the societal and health implications of ID-MD the knowledge-to-action plan had a modest impact limited at the regions where ID-MD programmes were already implemented.
Implications for health policy: Specific priority setting on ID-MH should be incorporated to mental health strategy at the Ministry of Health within a broader health and ID plan. National and regional policies should incorporate an integrative care approach through the life cycle. The development of excellence centers on ID-MD and a national observatory on this topic should be encouraged.