The impact of nonsyndromic cleft lip with or without cleft palate on oral health-related quality of life

Abstract Nonsyndromic cleft lip with or without cleft palate (NSCL±P) compromises oral health, leading to missing or malformed teeth, and hampering oral hygiene. Apart from anatomic damages, NSCL±P also culminates in an impact on the routine quality of life with social privation and psychological embarrassment. Objective To evaluate the impact of NSCL±P on oral health-related quality of life. Material and Methods The study was classified as exploratory and descriptive, with quantitative approach. Patients with NSCL±P treated between August 2013 and September 2014 at the Cleft Lip and Palate Integral Care Center (CAIF), Curitiba, Brazil, were invited to participate. Age and sex-related data were collected, as well as level of education, financial income, type of orofacial cleft, use of orthodontic and prosthetic appliances, and number of previous orofacial surgeries. Selected patients were asked to answer the Oral Impact on Daily Performance (OIDP) questionnaire designed to measure the impact of oral health on daily performances. Results The sample was composed of 103 (44.59%) women and 128 (55.41%) men, with mean age of 19.74 ± 10.20 (7-65) years. The OIDP values ranged from 1 to 175 in 114 (49.35%) patients (mean: 22.38), whereas 117 patients (50.65%) presented total OIDP value equal to zero. High negative impact of NSCL±P on daily performances was detected when associated with the female sex (p=0.037). Daily performances related to phonetics (OIDP2; 2.63) and aesthetics (OIDP5; 2.48) presented the highest average values when compared to other daily performances, except OIDP6. The main symptoms and reported oral problems comprised the aesthetic dissatisfaction. Conclusions Almost half of the patients evaluated in this study showed negative impact of NSCL±P in the performance of daily activities.

Educational approaches focusing on the quality of life of people with chronic kidney disease receiving hemodialysis: an integrative review / Abordagens educativas focalizando a qualidade de vida da pessoa com doença renal crônica em hemodiálise: uma revisão integrativa

Abstract Introduction: The impact of chronic kidney disease (CKD) on the quality of life of patients receiving hemodialysis is widely studied. Despite the vast amount of literature on the topic, it is still important to investigate the educational approaches related to this population's quality of life, evolution, and treatment. Objective: To systematically review the literature on educational approaches focusing on people with CKD receiving hemodialysis. Methods: An integrative systematic review of studies published between 2010 and 2015 was conducted using the PubMed, LILACS, PROQUEST, SCIENCEDIRECT, and SciELO databases using the keywords "quality of life and hemodialysis and adults", with their translation equivalents in Portuguese and Spanish. Results: The studies included in this review investigated biological conditions, treatment adherence, psychosocial conditions, and even spiritual influence. These studies unanimously recognized the validity of educational approaches, be it for treatment adherence, actor´s empowerment, or self-knowledge, as well as the importance of addressing a wider patient view and participatory therapy planning. Conclusion: The quality of life of people with CKD is a widely and differently studied topic, but the number of educational approaches focusing on this group of patients is modest and poorly represented in the existing literature. The few studies that address this topic are in complete agreement about the importance and relevance of educational approaches for people with CKD. We conclude that patient adherence, participation, and empowerment should be considered and encouraged.

Resumo Introdução: Qualidade de vida é tema amplamente estudado, como forma de compreender as repercussões causadas na vida das pessoas com doença renal crônica - DRC em hemodiálise. Apesar da vasta literatura sobre o tema, ainda é útil interrogar sobre as abordagens que se ocupam de processos educativos relacionados à qualidade de vida, nessa população, sua evolução e tratamento. Objetivo: Revisar sistematicamente a literatura quanto a propostas de natureza educativa, na abordagem a pessoas com DRC em hemodiálise. Métodos: Revisão sistemática integrativa de estudos publicados entre 2010 a 2015, nas bases: PubMed, LILACS, PROQUEST, SCIENCE DIRECT e SciELO; termos de busca "qualidade de vida e hemodiálise e adultos", com seus equivalentes em inglês e espanhol. Resultados: As publicações incluídas na revisão perpassaram abordagens de condições biológicas, adesão ao tratamento, condição psicossocial e, inclusive, a influência espiritual. Os estudos foram unânimes em reconhecer a validade dos processos educativos, quer sejam de adesão ao tratamento; de empoderamento dos atores; da importância de autoconhecimento; da necessária visão ampla sobre o paciente e da importância do planejamento participativo na abordagem terapêutica. Conclusão: a exploração do tema qualidade de vida em pessoas com DRC é ampla e diversificada, sendo sua abordagem educativa discreta e pouco representativa quanto ao número de publicações disponíveis. Os poucos estudos que tratam do tema são unânimes em reconhecer a importância e relevância das abordagens educativas para pessoas com DRC. Conclui-se que a adesão, a participação e a emancipação dos pacientes devam ser consideradas e encorajadas.