This study identified a set of psychosocial difficulties that are associated with short term changes in health outcomes in a group of heterogeneous brain disorders. These psychosocial difficulties are: sensation of pain, mental functions such as energy and drive functions, sleep and emotional functions, as well as a broad range of activities and participation domains, including solving problems, conversation, areas of mobility and self-care, relationships, community life and recreation and leisure. In clinical practice, these difficulties can be used as the basis for a description of the difficulties in people’s lives associated to these conditions and to make comparisons among them. In this context it is important to mention that all identified ICF categories (with the exception of vision) were included in the World Health Survey (WHS) used by the WHO in its 2000 report on health system performance assessment  and in the World Mental Health Surveys , in both cases to compare disability across conditions at the population level. The WHO set of domains (mobility, self-care, pain and discomfort, cognition, interpersonal activities, vision, sleep, energy, and affect) has not been further validated across populations. Even though the validation of the WHS set of domains was not an aim of this study, our results do show that these domains are relevant to a broad range of heterogeneous clinical samples with brain disorders.
The fluctuations in the health outcomes GH Scale, MCS and the WHODAS II score when measured over short periods of time were small. This means that to determine whether greater changes over time in the disorders take place, cohort studies that followed patients over much longer periods of time, most likely years, would be needed. Large sample studies of this sort involving patients with a number of brain disorders have not been published, as far as we are aware. There is, however, at least one coordination action at the European level currently being carried out to address the changes in psychosocial difficulties of brain disorders over time (PARADISE http://www.paradiseproject.eu). PARADISE is currently testing an innovative approach to collecting clinical data on the psychosocial difficulties that people experience when they suffer from brain disorders, the determinants of the occurrence of those difficulties and the determinants of their change over time. The results of this project will be available mid-2013. In addition, the results show that it will be important to analyze whether both outcomes related to mental health and physical health vary over time and whether different psychosocial domains predict these changes.
All the models improved after introducing the ICF categories, and some of these results need special comment:
By introducing eight ICF categories – energy and drive functions, emotional functions, lifting and carrying objects, walking, using transportation, informal social relationships, community life and health services, systems and policies – to time, gender, age, health condition and disease severity, it is possible to explain the variation among patients in self-reported general health. This suggests that both bodily domains (energy and drive, emotional functions, carrying objects, walking and using transportation) and the more social domains (informal social relationships and community life) need to be considered in order to adequately describe the experience of general health for persons with brain disorders, and thereby to gain the advantages for intervention planning and other applications of a more extensive understanding of this experience.
Similarly, model fit of self-report mental health was shown to be improved after introducing a broad range of variables that included sleep functions, solving problems, conversation, acquisition of goods and services and drugs. These results are especially interesting since none of the psychosocial domains mentioned are included in the SF-36 , which underscores the importance of information about social domains, as well as mental domains, for the overall description of mental health in brain disorders.
The psychosocial difficulties that contribute to the improvement of the model fit of the WHODAS II summary score are difficulties covered by questions in this questionnaire, so it should not come as a surprise that they were selected in the regression model. It is important to mention that solving problems helps to explain the variability over time of the WHODAS II summary score. Solving problems is a domain of activity and participation that is not consistently taken into account in studies of people experiencing brain disorders. Our investigation provides some evidence that this domain is an important psychosocial difficulty relevant to a comprehensive description of the experience of living with a brain disorder.
The relationship between the disability measured with the WHODAS II and with the SF-36 in brain disorders has already been evaluated in two papers on depression and migraine [24, 25]. Results from these studies account for mild to moderate correlations between these questionnaires, thus confirming that both measure difficulties related to different psychosocial problems, and that measures of psychosocial difficulties should be employed in clinical and public health research using a cross-cutting perspective, and not only a disease-specific one.
Finally, this study shows that it is useful to use the ICF as a source of independent variables for longitudinal studies and as a basis for defining psychosocial difficulties. Using ICF made it possible for us to analyze together the data derived from different brain disorders. Psychosocial difficulties were conceptualized in terms of ICF as disabilities arising from the interaction of the brain disorder and personal and environmental factors. They represent impairments, activity limitations and participation restrictions. Impairments and activity limitations are decrements of functioning capacity, and so are elements of a person’s health state. Participation restrictions go beyond the health state to include restrictions in a person’s performance of actions, tasks and behaviors in his or her actual environment .
We have shown that psychosocial difficulties must not be defined solely in terms of the health conditions that produce decreases in functioning in various domains, but also in terms of the physical, social and attitudinal environment, which, when taken into account, contributes to explain the impact of brain disorders on people’s lives. The social and attitudinal environment, especially in the case of brain disorders, includes barriers such as fear, misunderstanding, stigma and discrimination [27–30], as well as the absence of social policies to accommodate people with brain disorders in the workplace and elsewhere in society [31, 32].
Against our expectations, in this study three environmental factors - Immediate family, Individual attitudes of immediate family members and Health services, systems and policies - were not selected in the corresponding models as significant independent variables. There are potentially many reasons for this, including of course limitations of our study design, such as having to collapse the response options of the ICF qualifiers from 0 to 4 to the dichotomous, 0 and 1. Doing so resulted in a loss of variability, and consequently sensitivity to change. The collapsing was performed because model complexity would have greatly increased if the ICF categories had been used as categorical variables with 5 and 9 response options, respectively, and for each response option, interaction with time would have to have been separately considered. A second limitation of the study that should be mentioned is the irregularity with which the time points of assessment are spaced. This irregularity was due to practical considerations, such as the time in which the health professionals could access the patients’ clinical records and performed the interviews. Nevertheless, the irregular time points of assessment across patients do not put into question the validity of the results, since time in days has been included as a metric variable in the multilevel models for change. Finally, 103 ICF categories had >50% of missing values and were excluded from the analyses. As mentioned before, we followed the recommendations of WHO and only those ICF categories that are relevant to the patient are documented. Thus, we assume that the ICF categories excluded from the analyses refer to issues that are not relevant for the large majority of the patients and therefore the validity of the results is not compromised. However, we cannot deny that the decisions of the health professionals regarding the relevance for the patients of areas addressed by ICF categories is fallible, which might have influenced the validity of the data at the end. For future studies, we recommend that the same ICF categories always be evaluated for all the patients included in the study.