The Person-Centered Health model in Intellectual Developmental Disorders/Intellectual Disability

Background and Objectives: This paper analyses the different aspects related to the conceptualization and assessment of Intellectual Developmental Disorders / Intellectual Disability (IDD/ID) following the Person-centered Integrative Diagnostic (PID) model of the International Network for Person-centered Medicine, with a main emphasis on the health status and health self-perception. Methods: Conceptual paper, including expert opinions based on literature review. Results: The conceptualization of IDD/ID should shift the traditional over-reliance on the intelligence (IQ) score in favour of the daily life expression of specific cognitive functions and the determination of the levels of severity of intellectual functioning, that is currently based on the person’s IQ score, should be reached through a system that is predicated on the person’s satisfaction attainment towards life. The assessment of cognition should be aimed at identifying those dysfunctions that have the highest impact on individual behaviour, skills, adaptation, autonomy, and quality of life across the life span, highlighting personal cognitive strengths and weaknesses that can be worthwhile for the planning of effective interventions. Conclusions: Authors conclude that the application of the PID model to IDD/ID represents a prototypical example of how this approach can be useful for understanding complex constructs in health care. An overview of the main factors related to the implementation of the person-centered care model by health systems and services is also provided. Received: 17 July 2015 Revised: 5 November 2015 Accepted: 10 November 2015 240 MARCO O. BERTELLI ET AL. Intellectual developmental Disorders and the Person-centered Integrative Diagnostic model In 2010 the International Network for Per son-centered Medicine proposed a Personcentered Integrative Diagnostic model (PID) defined by broad informational domains, covering both ill health and positive health along three levels: health status (disease/ disability versus wellbeing); experience of health (aspirations, satisfaction, experiences of ill-being and of wellbeing); and contributors to health (risk and protective factors)1. According to this model, diagnosis is both a process and a formulation, and it should be oriented by the articulation of science and humanism, the use of a bio-psycho-socialcultural-spiritual framework. This conceptual framework developed in mental health field has been refined during the last five years in the context of the Geneva Conferences and Declarations produced by the International College of Person-Centered Medicine (ICPCM). However, its applicability to Intellectual Developmental Disorders or Intellectual Disabilities (IDD/ID) remains unexplored. This is particularly relevant due to the complexity of this condition, and the challenges described in its assessment, diagnosis and care planning; in spite of the fact that the IDD/ID sector was an earlier adopter of the person-centered care model2-4. The different domains of the PID model of person-centered health show particular challenges in IDD/ID. The contributors or determinants of health in IDD/ID have been extensively analysed, including factors such as deprivation, ethnicity and health inequalities5,6. In this paper we analyse the different aspects related to the conceptualisation and assessment of IDD/ID following the PID approach to person-centered health with a main emphasis on the health status and health self-perception of persons with IDD/ID. In the last section of this paper we provide an overview of the main factors related to the implementation of the personcentered care model by care and support organisations in this field. Table 1 Domains, sub-domains and items content of the QOL-IP to persons with IDD (Italian version Bertelli et al.46). Domains Sub-domains Content of items Physical Appearance, grooming, hygiene, nutrition, fitness, mobility, sleep, sex Psychological Psychological health and adjustment, feelings, self-concept, self-esteem, self-consciousness Spiritual Spiritual beliefs, personal values, standards of conduct, hope for the future Physical Relationship with physical environments: home, neighbourhood, community, work Belonging Social Relationship with others: partner/spouse, friends, family, co-workers, neighbours, groups Community Access to public events and resources (work, income, services/programs, community events) Practical Daily/regular activities: domestic, voluntary, work, school, attending appointments (health) Becoming Leisure Leisure and recreational activities: hobbies, socializing, vacations, holiday activities Growth Improving/learning skills, adapting to life’s changes, trying new things, problem-solving Being Health Status of persons with Intellectual Developmental Disorders The PID model highlights the importance of the assessment of the positive domain of wellbeing and good functioning, as well as the negative domain which includes the health condition or disease and the status of disability. The relationship between disability and functioning in the person-centered medicine model has been revised elsewhere7. The case of IDD/ID is particularly challenging as there is not an international consensus on whether it is a health condition and therefore it should be classified in the International Classification of Diseases (ICD) or it is a disability that should not be coded in ICD but in the International Classification of Functioning (ICF). The fact that the international community has not reached an agreement in such a basic question and that there is an ongoing debate on its placement at the WHO Family of Classifications reflects the complexity of this construct. As a matter of fact many national agencies follow the approach of the American Association of Intellectual and Developmental Disabilities that defines “Intellectual disability” as “a disability characterized by significant limitations both in intellectual functioning [IQ>70] and in adaptive behaviour, which covers many everyday social and practical skills. The timeframe for age of onset is defined from birth to 18 years. This has oriented the recommendations made by this group for naming and conceptualising this condition at ICD8,9. Other organisations such as the World Psychiatric Association have defined it as a group of health condition, namely developmental conditions, characterized by a significant impairment of cognitive functions, which are associated with limitations of learning, adaptive behaviour and skills10. This definition was extended by the ICD Working Group in 2011, under the new term of “Intellectual Developmental Disorders”: a group of etiologically diverse conditions that are present from birth or that arise during the developmental period, characterized by a marked impairment of cognitive functions necessary for the development of knowledge, reasoning, and symbolic representation of the level expected of one’s age peers, cultural and community environment. IDD was also defined as a life span condition requiring consideration of all developmental stages and life transitions11,12. Furthermore, the ICD Working Group proposed revised diagnostic criteria for ICD-11 based on an articulated model of cognitive impairment. This approach should complement measurement of IQ with assessment of specific cognitive functions and a contextualized description of consequent adaptive and learning difficulties. Within this new approach, cognitive skills should be assessed in the most comprehensive way as possible. The measurement should be done through tests, semistructured observations, and direct clinical examination. The tests should combine measurement of IQ with that of complex aspects of executive functioning, including perceptual reasoning, processing speed, verbal comprehension, as well as specific aspects, such as attention, perception, and working memory. The evaluation should aim to identify the cognitive dysfunctions that have the greatest negative impact on the person’s lifespan, not only in cognitive skills but also in terms of associated behaviour, ability, adjustment, autonomy, and all other factors that rely on person-centered health11,12. The current debate reflects the importance of a multifaceted approach complex health problems and the significant contribution made by ICPCM and the PID integrative multidimensional matrix1, which takes into account not only the health condition and the disability but also the positive aspects dePERSON-CENTERED HEALTH & INTELLECTUAL DEVELOPMENTAL DISORDERS 241