Bertelli 2 Speaker 

Marco O. Bertelli  

Psychiatrist and Psychotherapist; Scientific Director CREA (Research and Clinical Centre) of San Sebastian Foundation;
Past Chair WPA-SPID (World Psychiatric Association - Section Psychiatry of Intellectual Disability);
Past President EAMH-ID (European Association for Mental Health in Intellectual Disability);
President SIDiN (Italian Society for Neurodevelopmental Disorders);
President Elect AISQuV (Italian Association for the Study of Quality of Life)



In the field of neurodevelopmental disorders (NDD), particularly intellectual disability (ID) and autism spectrum disorder (ASD), healing or restoring functional capacities to levels that are similar to those of the majority of people is not a realistic aim in most cases. Thus, outcome measures for therapeutic interventions are heterogeneous, uncertain or restraining (Bertelli and Brown, 2006). In the last decades, alternative outcome measures have been developed, based on the concept of comprehensive well-being and quality of life (QoL), which surpass the criteria of normality and morpho-functional integrity, suggesting care provision aimed at improving a person’s satisfaction with their own life.

Even though QoL has now become a mainstream theory, its measures are not more reliable than those used for traditional medical approaches. QoL is still a polysemic expression which defines a multidimensional concept, referring to a wide variety of aspects, involving numerous definitions and applications. Even the criteria for classifying different models have not been agreed upon yet. For the application with persons with ID, consensus has been reached only on the need to assess both qualitative and quantitative components through objective and subjective perspectives (Bertelli & Brown, 2006). Thus, the level of inclusion of areas that have been recognized to be applicable to any person’s life and the level of sensitivity to subjective variations within these areas could be a useful basis for benchmarking assessment tools in accordance with current knowledge.

In the model I find most useful for planning and carrying out interventions with persons with NDD, the individuals’ satisfaction with an aspect of life has to be mediated by the importance they ascribe to it (Becker et al., 1993). Thus, a comprehensive and productive assessment of QoL must include measures of both individual attribution of importance and individual perception of satisfaction in those areas. The opportunities a person had to attribute importance and to perceive satisfaction in an area are also crucial.

A reliable assessment of a person’s quality of life is hard to establish. In current practice, it is evaluated by combining information from different proxies, for example family caregivers, family members or health care professionals. Proxy assessment involves several problematic issues. First of all, it may vary depending on factors such as individual character and perception, cultural level or the nature of the relationship with the person with ID or ASD. For example, most researches have shown that parents and relatives in general tend to attribute a lower level of QoL than health care workers do. Another major element is that the proxy can assess the person with NDD as they consider the person would evaluate themself (proxy-person perspective), but it can also occur that the proxy adopts their own point of view in evaluating the person with NDD (proxy-proxy perspective). For individuals with severe ID, proxy-patient assessment is of controversial validity and reliability, and an accurate understanding of their wishes or interests continues to be a very troublesome challenge. Some authors created a system to evaluate importance and satisfaction of this group of persons based on a structured observation of their recurring behavioural repertories.

In sociology and more recently in mental health care, QoL assessment aims to identify the hierarchy of areas of current or potential interest in every person's life in order to enhance the general satisfaction in these areas and therefore life in general. From this point of view, QoL consists of the identification of a path or a way of living rather than the achievement of a contingent objective. The QoL assessment includes the number of meaningful experiences people have in life areas they value the most, and the opportunities they receive in order to acquire these experiences, including the possibility to make independent choices. In other words, the assessment of QoL aims to identify the extent in which the different life areas contribute to the achievement of a full and actively lived life.

The employment of QoL as an outcome measure is particularly useful for multidisciplinary integrated interventions involving different professionals, family, and life environments which are increasingly recognized as most appropriate for mental health needs of persons with NDD. Similarly, it suits the need for close interaction between various agencies related to social, educational, legal and health sectors for the integration of services to form a holistic management of the individual. Considering the high vulnerability of persons with NDD and the significant prevalence of psychiatric disorders in this group, it is important to adopt an approach that comprehends as many facets as possible in its assessment. 

Problem behaviours (PBs) may also be an example of usefulness of the participatory paradigm. Generally, PBs in PWID are treated pharmacologically and the search for a therapy which takes into account the individual specific conditions and the improvement of quality of life is disregarded. Actually, clinical practice suggests that an effective intervention on PBs should be characterized by a simultaneous consideration of organic, psychiatric, and socio-functional aspects and their pathogenetic contribution, on the basis of a multimodal analytical approach. This indication is confirmed by recent evidence from scientific literature that supports the effectiveness of therapeutic processes developed on the basis of specific clinical and environmental information related to each patient. Such procedures can also be helpful in providing effective models for the assessment of adaptive skills.

An integrative assessment which consists of contributions from various disciplines might also allow the identification of problems in the classification systems strictly linked to clinical practices. It can also be useful in providing genetic models for psychiatric disorders commonly experienced by persons with NDD, with potential benefits for their early identification as well as for the development of increasingly sensitive diagnostic tools. In fact, more than any other mental health condition, ID and ASD provide sufficient opportunities to explore the clinical expression of the body-mind link. Traditionally, mental health care for individuals with NDD has been parsed out to multiple providers and/or agencies along disparate funding lines. Providers of services for physical health, mental health, and behavioural issues have often separate allocations and are managed by different entities. Bringing together those disciplines which have traditionally served individuals with ID, in line with the QoL approach, challenges the status quo and implies a drastic renewal of the current system of service provision in many countries across the world.

The QoL approach is also aligned with new conceptualisations of person-centred psychiatry, which highlights the importance of engagement, empathy and partnership in the clinical care process, and sustains the patients’ autonomy, responsibility and dignity, while advancing the recovery and promotion of well-being. To assess the domain of a person’s experience and values, a person-centred integrated diagnostic process uses descriptive categories, dimensions, and narratives to cultivate patient-family-clinician partnerships for achieving shared diagnostic understanding and commitment to care (Botbol et al., 2016). The implementation of QoL in psychiatry of NDD may also support a shift from the traditional over-reliance on the unitary intelligence (IQ) score in favour of specific cognitive functions. The assessment of cognition should be aimed at identifying strengths and weaknesses that can impact individual skills which contribute to satisfaction with life. After much research focused on the individual QoL, the international scientific community has now dealt with the generic QoL of the families including people with NDD. The most relevant studies on this theme in respect to ID have been conducted with the Beach Center Family Quality of Life Scale and the Family QoL Survey, while the Quality of Life in Autism Questionnaire has resulted in being the most often used tool for parents of children with ASD.

As mentioned above, different QoL assessment tools do not include the same life domains. Spirituality represents one of the major differences. In the model and tool for the QoL measurement proposed by the research group of the Centre for Public Health at the University of Toronto (Renwich & Brown, 1996), spirituality represents an emic area with considerable implications for the lives of all people in all cultures. In this instrument, spirituality is evaluated through the following items: value attributed to life, intimacy and introspection spaces, how individuals pray or meditate, participating in religious activities, and feeling useful by helping others. Some wider declinations are also included, such as having personal values, right/wrong and good/bad criteria, things to live for and in which to have faith, and celebrating anniversaries or special events. In the tool of the World Health Organization (WHOQOL-SRPB Group, 2006), aspects considered essential for the impact of spirituality on QoL are represented by attributing a meaning to life, ability to awe, feeling a sense of wholeness, integration, hope and inner peace, being optimistic, calamity and being in harmony with the surrounding. The reference to spirituality is described by the authors in the explanation of the items of the tools: For example, the state of inner peace can be connected to the personal relationship with God rather than the faith in transcendent principles or moral values. Finally, in the QoL Questionnaire by Schalock, Verdugo and collaborators, spirituality consists of a sub-indicator or sub-descriptor of the emotional being, which is one of the several possible ways a person may express a subjective degree of quality in the area of emotionality (Schalock & Verdugo, 2002), depending on the context and the person. Religion is one of the most frequent sub-indicators. Most researchers identify spirituality as a significant predictor of a high level of QoL in the medium and long term, together with optimism, good mood, collaboration in care, and social support. Recently, the strong connection between spirituality and QoL has been operationalised in the concept of Spiritual Well-Being, which expresses the way and the extent to which spirituality affects the individual perception of life as a whole.


Becker M., Diamond R., Sainfort F. (1993) A new patient focused index for measuring quality of life in persons with severe and persistent mental illness. Quality of Life Research, 2, 239.

Bertelli M., Brown I. (2006). Quality of life for people with intellectual disabilities. Current Opinion in Psychiatry, 19, 508-513.

Botbol M., Bertelli M.O., Salvador-Carulla L., Anagnostopoulos D., Christodoulou A., Appleyard J. (2016) Child and Adolescent Psychiatry. In Mezzich J.E., Botbol M., Christodoulou G.N., Cloninger C.R., Salloum I.M. (Eds.), Person Centered Psychiatry (pp. 445-458). Springer International Publishing.

Renwick R., Brown I. (1996). The Centre for Health Promotion’s Conceptual Approach to Quality of Life. Being, Belonging, and Becoming. In: Renwick R., Brown I., Nagler M. (Eds.), Quality of life and health promotion and rehabilitation: Conceptual approaches, issues and applications (pp. 75–86). London, UK: Sage.

Schalock R.L., Verdugo M.A. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.

WHOQOL-SRPB Group, [N.V.], Skevington S.M. (2006). A cross-cultural study of spirituality, religion and personal beliefs as components of quality of life. Social Science and Medicine, 62(6), 1486-1497.