Chronic pain and distress are universally accepted conditions that may adversely affect an animal's quality of life (QOL) and lead to the humane euthanasia of an animal. At most research institutions and zoological parks in the USA, a veterinarian, who has physically examined the animal and reviewed the clinical records, ultimately decides when an animal has reached a humane endpoint. To aid in the difficult process of interpreting pain and distress, we have developed specific behavioural guidelines, in addition to standard clinical information, to help define unique characteristics and traits of primates to assess and promote discussion of an individual primate's QOL, and thereby, to assist in the decision-making process regarding euthanasia. These guidelines advocate the creation of a QOL team when the animal is diagnosed with a life-threatening or debilitating chronic condition, or at the time the animal is entered into a terminal study. The team compiles a list of characteristics unique to that individual animal by utilising a questionnaire and a behavioural ethogram. This list enables the team to quantitatively assess any deviations from the established normal behavioural repertoire of that individual. Concurrently, the QOL team determines the number of behavioural deviations that are needed to trigger an immediate discussion of the necessity for humane euthanasia of the animal. The team remains intact once created, and revisits the animal's condition as frequently as deemed necessary. This process improves animal welfare by continuing the quest to optimally define QOL for captive primates, and potentially for all captive animals.

Psychosocial health issues are common among children with cardiac diagnoses. Understanding parent and child perceptions is important because parents are the primary health information source. Significant discrepancies have been documented between parent/child quality-of-life data but have not been examined among psychosocial diagnostic instruments. This study examined agreement and discrepancies between parent and child reports of psychosocial health and quality of life in the paediatric cardiology population. Children (n=50, 6–14 years) with diagnoses of CHDs (n=38), arrhythmia (n=5), cardiomyopathy (n=4), or infectious disease affecting the heart (n=3) were enrolled, completing one or more outcome measures. Children and their parents completed self-reports and parent proxy reports of quality of life – Pediatric Quality of Life Inventory – and psychosocial health – Behavioral Assessment Scale for Children (Version 2). Patients also completed the Multidimensional Anxiety Scale for Children. Associations (Pearson’s correlations, Intraclass Correlation Coefficients) and differences (Student’s t-tests) between parent proxy reports and child self-reports were evaluated. Moderate parent–child correlations were found for physical (R=0.33, p=0.03), school (R=0.43, p<0.01), social (R=0.36, p=0.02), and overall psychosocial (R=0.43, p<0.01) quality of life. Parent–child reports of externalising behaviour problems, for example aggression, were strongly correlated (R=0.70, p<0.01). No significant parent–child associations were found for emotional quality of life (R=0.25, p=0.10), internalising problems (R=0.17, p=0.56), personal adjustment/adaptation skills (R=0.23, p=0.42), or anxiety (R=0.07, p=0.72). Our data suggest that clinicians caring for paediatric cardiac patients should assess both parent and child perspectives, particularly in relation to domains such as anxiety and emotional quality of life, which are more difficult to observe.