Qualidade de vida e espiritualidade

BACKGROUND: Spirituality has been considered as an important quality of life dimension. OBJECTIVES: To present a literature review about quality of life and spirituality, their association and measurement. METHODS: Search for title words in PsycINFO and PubMed/Medline database between 1979-2005. RESULTS: Quality of life is a new concept, that embraces and transcends the concept of health. It is composed by several domains or dimensions: physical, psychological, environmental, among others. Called "the missing measure in health", it has been defined as the individuals perception of his/her position in life, considering cultural and value systems in which he/she lives, and in relation to his/her goals, expectations, standards and worries. There are consistent evidences of the association between quality of life and spirituality/religiosity, obtained from studies with reasonable methodological rigor, using many variables to assess spirituality (for example: religious affiliation, prayer, and spiritual/religious coping). There are also several valid and reliable quality of life instruments that assess the spiritual/religious dimension. CONCLUSIONS: New studies are needed especially in Brazil. These studies will provide empirical data to be used to plan spiritually based health care interventions, aimingat a a better quality of life.CONTEXTO: A espiritualidade tem sido apontada como uma importante dimensão da qualidade de vida. OBJETIVO: Apresentar revisão de literatura sobre qualidade de vida e espiritualidade, sua associação e instrumentos de avaliação. MÉTODO: Busca do tema-título nas bases de dados PsycINFO e PubMed/Medline entre 1979 e 2005. RESULTADOS: A qualidade de vida é um conceito recente, que engloba e transcende o conceito de saúde, sendo composto de vários domínios ou dimensões: física, psicológica, ambiental, entre outras. Considerada a medida que faltava na área da saúde, tem sido definida como a percepção do indivíduo de sua posição na vida no contexto da cultura e sistema de valores nos quais vive e em relação aos seus objetivos, expectativas, padrões e preocupações. Há indícios consistentes de associação entre qualidade de vida e espiritualidade/religiosidade, por meio de estudos com razoável rigor metodológico, utilizando diversas variáveis para avaliar espiritualidade (por exemplo: afiliação religiosa, oração e coping religioso/espiritual). Também existem vários instrumentos de qualidade de vida válidos e fidedignos que avaliam a dimensão espiritual/religiosa. CONCLUSÕES: Novos estudos são necessários, entretanto, especialmente no Brasil. Tais estudos proverão dados empíricos a serem utilizados no planejamento de intervenções em saúde espiritualmente embasados, visando a uma melhor qualidade de vida

Health-related quality of life of children and adolescents with osteogenesis imperfecta: a cross-sectional study using PedsQL™

Abstract Background Osteogenesis imperfecta (OI) is a disorder of bone formation leading to low mineral density and fractures. Children and adolescents with OI require periodic medical follow up, corrective surgery, drug therapy and physical therapy, as well as specific daily care practices. In addition, they have an increased incidence of fractures, which require immobilization and cause severe discomfort and short-term disability. This study evaluated the health-related quality of life of children and adolescents with OI in two reference centers for OI treatment in southern Brazil. Methods In this prospective cross-sectional study, the Pediatric Quality of Life Inventory (PedsQLTM) was applied in two university-affiliated reference centers for OI treatment in southern Brazil. Children and adolescents aged ≥ 5 years with clinical diagnoses of OI were included. Clinical data and socioeconomic status was evaluated. Results The sample consisted of 52 children and adolescents with OI (aged 5-17 years); 26 (50%) participants with type I OI, 13 (25%) type IV, 12 (23.1 %) type III, and 1 (1.9%) type V OI. Physical and social functioning domains differed significantly according to clinical presentation of OI with lowest scores in the severe type (OI type III). Pain seems to be the variable that is most associated with impact on the PedsQL domains. Conclusions Overall, this study revealed differences in physical functioning and social functioning in relation to OI clinical presentation. These results reinforcing the importance of the clinical management of these patients with the aim of functional improvement and importance of pain control