Qualidade de vida em adultos com doença falciforme: revisão integrativa da literatura

Freitas, Sandra Luzinete Felix de; Ivo, Maria Lucia; Figueiredo, Maria Stella; Gerk, Maria Auxiliadora de Souza; Nunes, Cristina Brandt; Monteiro, Fernando de Freitas

doi:10.1590/0034-7167-2016-0409

Sandra Luzinete Felix de Freitas AUTOR CORRESPONDENTE Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Universidade Federal de Mato Grosso do Sul, Programa de Pós-Graduação em Saúde e Desenvolvimento na Região Centro-Oeste. Campo Grande-MS, Brasil.

Maria Lucia Ivo

Universidade Federal de Mato Grosso do Sul, Programa de Pós-Graduação em Saúde e Desenvolvimento na Região Centro-Oeste. Campo Grande-MS, Brasil.

Maria Stella Figueiredo

Universidade Federal de São Paulo, Departamento de Oncologia Clínica e Experimental. São Paulo-SP, Brasil.

Maria Auxiliadora de Souza Gerk

Universidade Federal de Mato Grosso do Sul, Centro de Ciências Biológicas e da Saúde, Curso de Graduação em Enfermagem. Campo Grande-MS, Brasil.

Cristina Brandt Nunes

Universidade Federal de Mato Grosso do Sul, Centro de Ciências Biológicas e da Saúde, Curso de Graduação em Enfermagem. Campo Grande-MS, Brasil.

Fernando de Freitas Monteiro

Associação Beneficente de Campo Grande, Residência Médica em Psiquiatria. Campo Grande-MS, Brasil

AUTOR CORRESPONDENTE Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Base	Autor, título do artigo	Periódico, classificação, ano e país	Escala	Objetivos	Delineamento e nível de evidência
MEDLINE	McClish et al⁽¹³13 McClish DK, Penberthy LT, Bovbjerg VE, Roberts JD; Aisiku IP, Levenson JL, et al. Health related quality of life in sickle cell patients: The PiSCES project. Health Qual Life Outcomes[Internet]. 2005[cited 2016 Jun 25];3(50):1-7. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1253526/ http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾. Health related quality of life in sickle cell patients: the PiSCES project.	Health Qual Life Outcomes (B1), 2005, USA	SF36	Avaliar a QV dos pacientes com DF participantes do Projeto The Pain in Sickle Cell Epidemology Study (PiSCES)	Coorte - grupos: asma, fibrose cística e diálise.Nível IV
	Ballas et al⁽¹⁴14 Ballas SK, Barton FB, Waclawiw MA, Swerdlow P, Eckman JR, Pegelow CH, et al. Hydroxyurea and sickle cell anemia: effect on quality of life. Health Qual Life Outcomes[Internet]. 2006[cited 2016 May 27];4(59):1-8. Available from: http://www.hqlo.com/content/pdf/1477-7525-4-59.pdf http://www.hqlo.com/content/pdf/1477-752... ⁾. Hydroxyurea and sickle cell anemia: effect on quality of life.	Health Qual Life Outcomes (B1), 2006, USA	SF36	Avaliar o efeito da hidroxiureia (HU) na qualidade de vida do paciente com anemia falciforme (AF).	Ensaio clínico, duplo-cego, randomizadoNível II
	Asnani et al ⁽⁴4 Asnani MR, Lipps GE, Reid ME. Component structure of the SF-36 in Jamaicans with sickle cell disease. West Indian Med J[Internet]. 2007[cited 2016 Jan 02];56(6):491-7. Available from: http://caribbean.scielo.org/pdf/wimj/v56n6/a04v56n6.pdf http://caribbean.scielo.org/pdf/wimj/v56... ⁾. Component structure of the SF-36 in Jamaicans with sickle cell disease.	West Indian Med J (B1), 2007, Jamaica	SF36	Avaliar o componente estrutural da SF36 em pacientes jamaicanos com DF.	Coorte randomizado, amostra aleatóriaNível IV
	Adams-Graves et al⁽⁵5 Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol[Internet]. 2008[cited 2016 May 30];83(7):558-62. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21146/pdf http://onlinelibrary.wiley.com/doi/10.10... ⁾. Development and validation of SIMS: an instrument for measuring quality of life of adults with sickle cell disease.	Am J Hematol (A1)2008 USA	SIMS	Desenvolver a Escala de Mensuração de Impacto da Doença Falciforme (SIMS), um instrumento para medir a qualidade de vida de adultos com DF.	Caso controle - criação e testagem de escala com dois grupos.Nível IV
	Asnani et al⁽¹1 Asnani MR, Reid ME, Ali SB, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health [Internet]. 2008[cited 2015 Jul 21];8(2):1-9. Available from: http://www.rrh.org.au/publishedarticles/article_print_890.pdf http://www.rrh.org.au/publishedarticles/... ⁾. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences.	Rural Remote Health2008 Jamaica	SF-36	Conhecer as diferenças entre a QV dos pacientes com DF que vivem em zona urbana e rural.	Observacional analítico Nível IV
	Asnani et al⁽¹⁵15 Asnani, M, Lipps G, Reid M. Utility of WHOQOL-BREF in measuring quality of life in sickle cell disease. Health Qual Life Outcomes[Internet]. 2009[cited 2016 Jul 26];7(75):1-6. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407 http://www.smj.org.sa/index.php/smj/arti... ⁾. Utility of WHOQOL-BREF in measuring quality of life in sickle cell disease.	Health Qual Life Outcomes2009 Jamaica	WHOQOL Bref	Estudar a utilidade do WHOQOL-Bref na mensuração da QV dos pacientes com DF.	Caso controle Nível IV
	van Tuijn et al⁽¹⁶16 van Tuijn CF, van Beers EJ, Schnog JJ, Biemond BJ. Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease. Am J Hematol [Internet]. 2010[cited 2016 Oct 13];85(7):532-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21731/epdf http://onlinelibrary.wiley.com/doi/10.10... ⁾. Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease	Am J Hematol (A1), 2010, Holanda	SF36	Avaliar prospectivamente (5 anos) a QV em uma coorte de pacientes com DF, relacionando com danos crônicos em órgãos, a taxa de dor e a história de complicações relacionadas à doença.	Coorte Nível IV
	Dampier et al⁽¹⁷17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf http://onlinelibrary.wiley.com/doi/10.10... ⁾. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium.	Am J Hematol (A1), 2011, USA	SF36	Examinar a relação entre as várias complicações relacionadas com a DF e a qualidade de vida (QV).	Coorte Nível IV
	Anie et al⁽¹⁸18 Anie KA, Grocott H, White L, Dzingina M, Rogers G, Cho G. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ Open[Internet]. 2012 [cited 2016 Oct 12];2(4):1-6. Available from: http://bmjopen.bmj.com/content/2/4/e001274.full.pdf+html http://bmjopen.bmj.com/content/2/4/e0012... ⁾. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with SCD	BMJ Open (B1), 2012, USA	EQ-5D	Caracterizar a relação da dor com o humor e QV, na admissão, antes da alta e em uma semana pós-alta.	Transversal Nível VI
	Ohara et al⁽¹⁹19 Ohara DG, Ruas G, Castro SS, Martins PR, Walsh IA. Musculoskeletal pain, profile and quality of life of individuals with sickle cell disease. Rev Bras Fisioter [Internet]. 2012[cited 2016 Oct 13];16(5):431-8. Available from: http://www.scielo.br/pdf/rbfis/v16n5/pt_aop040_12.pdf http://www.scielo.br/pdf/rbfis/v16n5/pt_... ⁾. Musculoskeletal pain, profile and quality of life of individuals with SCD.	Rev. bras. Fisioter (B1)2012 Brasil	WHOQOL Breef	Verificar a relação entre a dor osteomuscular, considerando sua localização corporal, características sociais, econômicas e de QV em indivíduos com DF.	TransversalNível VI
	Al Jaouni et al⁽²⁰20 Al Jaouni SK, Al Muhayawi MS, Halawa TF, Al Mehayawi MS. Treatment adherence and quality of life outcomes in patients with sickle cell disease. Saudi Med J[Internet]. 2013[cited 2016 Jun 08];34(3):261-5. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407 http://www.smj.org.sa/index.php/smj/arti... ⁾. Treatment adherence and quality of life outcomes in patients with SDC	Saudi Med J (B3), 2013, Arábia Saudita	WHOQOL Breef	Avaliar a QVRS de pacientes com DF e mensurar o impacto da adesão ao tratamento nas complicações da doença, na gravidade, nas crises, e resultados.	Transversal Nível VI
	Keller et al⁽⁷7 Keller SD, Yang M, Treadwell MJ, Werner EM, Hassell KL. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health Qual Life Outcomes[Internet]. 2014[cited 2016 Apr 30];12(1):1-11. Available from: http://www.hqlo.com/content/12/1/125 http://www.hqlo.com/content/12/1/125... ⁾. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks.	Health Qual Life Outcomes (B1), 2014, USA	ASCQ-Me	Desenvolver o Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me)	TransversalNível VI
	Ahmed et al⁽²¹21 Ahmed AE, Alaskar AS, Al-Suliman AM, Jazieh AR, McClish DK, Al Salamah M, et al. Health-related quality of life in patients with sickle cell disease in Saudi Arabia. Health Qual Life Outcomes[Internet]. 2015[cited 2016 Jul 18];13:183. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4647668/ http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾. Health Qual Life Outcomes Health- related quality of life in patients with sickle cell disease in Saudi Arabia.	Health Qual Life Outcomes (B1), 2015. Arábia Saudita	SF36	Descrever as características dos pacientes sauditas com DF e seu impacto sobre a QV.	Transversal Nível VI
LILACS	Pereira et al⁽²²22 Pereira SAS, Cardoso CS, Brener S, Proietti ABFC. Sickle cell disease and quality of life: a study on the subjective perception of patients from the Fundação Hemominas, Minas Gerais, Brazil. Rev Bras Hematol Hemoter[Internet]. 2008[cited 2016 Oct 25];30(5):411-6. Available from: http://www.scielo.br/pdf/rbhh/v30n5/v30n5a15.pdf http://www.scielo.br/pdf/rbhh/v30n5/v30n... ⁾. Sickle cell disease and quality of life: a study on the subjective perception of patients from the Fundação Hemominas, Minas Gerais, Brasil.	Rev. bras. Hematol Hemoter (B3), 2008, Brasil	WHOQOL Breef	Pesquisar se o conceito de QV preconizado pela Organização Mundial de Saúde (OMS) poderia ser utilizado para pacientes com DF.	QualitativoVI
	Roberti et al⁽³3 Roberti MDRF, Moreira CLNSO, Tavares RS, Borges Filho HM, Silva AG, Maia CHG, et al. Evaluation of quality of life of patients with sickle cell disease in a General Hospital of Goiás, Brazil, Brasil. Rev Bras Hematol Hemoter[Internet]. 2010[cited 2016 Apr 28];32:449-54. Available from: http://www.scielo.br/pdf/rbhh/v32n6/08.pdf http://www.scielo.br/pdf/rbhh/v32n6/08.p... ⁾. Avaliação da qualidade de vida em portadores de doença falciforme do Hospital das Clínicas de Goiás, Brasil.	Rev. bras. Hematol Hemoter (B3), 2010, Brasil	WHOQOL Breef	Avaliar a QV dos doentes falciformes em tratamento no Hospital das Clínicas da Universidade de Goiás.	Transversal Nível VI
	Santos et al⁽²³23 Santos JP, Gomes Neto M. Sociodemographic aspects and quality of life of patients with sickle cell anemia. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(4):242-5. Available from: http://www.scielo.br/pdf/rbhh/v35n4/1516-8484-rbhh-35-04-0242.pdf http://www.scielo.br/pdf/rbhh/v35n4/1516... ⁾. Sociodemographic aspects and quality of life of patients with SCA.	Rev. bras. Hematol Hemoter (B3), 2013, Brasil	SF36	Descrever o perfil sociodemográfico e o impacto da doença sobre a QV dos pacientes com AF	Transversal Nível VI
	Losilla et al⁽²⁴24 Losilla M, Lima RS, Mello LM, Silva, AS, Nunes AA, Miranzi SC. Evaluating quality of life in patients with sickle cell disease: differences between adults and children. Medicina (RP)[Internet]. 2013[cited 2016 Jun 15];46(2):164-70. Available from: http://revista.fmrp.usp.br/2013/vol46n2/ao_Avalia%E7%E3o%20da%20qualidade%20de%20vida%20em%20pacientes%20com%20anemia%20falciforme.pdf http://revista.fmrp.usp.br/2013/vol46n2/... ⁾. Evaluating quality of life in patients with sickle cell disease: Differences between adults and children.	Medicina (RP) (B4), 2013, Brasil	WHOQOL Breef	Descrever e analisar a QV de pacientes com anemia falciforme em uma clínica de Hematologia de um hospital- escola na Região Sudeste, Brasil.	Transversal Nível VI
	Pereira et al⁽²⁵25 Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(5):325-31. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832312/pdf/rbhh-35-05-0325.pdf http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders.	Rev. bras. Hematol Hemoter (B3), 2013, Brasil	WHOQOL Breef	Avaliar a QV de pacientes com DF (HbSS e HbSC) e suas características clínicas e sociodemográficas.	Transversal Nível VI
	Mastandréa et al⁽²⁶26 Mastandréa EB, Lucchesi F, Kitayama MMG, Figueiredo MS, Citero VA. The relationship between genotype, psychiatric symptoms and quality of life in adult patients with sickle cell disease in São Paulo, Brazil: a cross-sectional study. Sao Paulo Med J[Internet]. 2015[cited 2016 Oct 22];133(5):421-7. Available from: http://www.scielo.br/pdf/spmj/v133n5/1516-3180-spmj-2015-00171105.pdf http://www.scielo.br/pdf/spmj/v133n5/151... ⁾. The relationship between genotype, psychiatric symptoms and quality of life in adult patients with sickle cell disease in São Paulo, Brazil: a cross-sectional study.	São Paulo Med J (B2), 2015, Brasil	SF36	Descrever a sintomatologia psiquiátrica presente no paciente brasileiro com doença falciforme e avaliar a relação desses sintomas com o genótipo da doença e a QVRS do sujeito.	Transversal Nível VI
	Martínez-Triana et al⁽²⁷27 Martínez-Triana R, García-Hernández A, Guerra-González EM, Machado-Almeida T, Reytor-Alfonso K. Efecto de la drepanocitosis sobre la calidad de vida. Rev Cuba Hematol Inmunol Hemoter[Internet]. 2015[cited 2016 Oct 12];31(3):267-87. Available from: http://scielo.sld.cu/pdf/hih/v31n3/hih06315.pdf http://scielo.sld.cu/pdf/hih/v31n3/hih06... ⁾. Efecto de la drepanocitosis sobre la calidad de vida.	Rev. cuba Hematol, Inmunol Hemoter (SI), 2015, Cuba	SF36	Determinar a QVRS de pacientes adultos com DF que recebem atendimento no Instituto de Hematologia e Imunologia (IHI)	Caso controleIV
CUMED	Martínez-Triana et al⁽²2 Martínez-Triana R, Martínez-Rodríguez M, Guerra-Romero C, Guerra-González EM, Machado-Almeida T, Machín-García S, et al. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis. Rev Cuba Hematol Inmunol Hemoter [Internet]. 2012[cited 2016 May 28];28:385-97. Available from: http://scielo.sld.cu/pdf/hih/v28n4/hih07412.pdf http://scielo.sld.cu/pdf/hih/v28n4/hih07... ⁾. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis.	Rev. cuba Hematol, Inmunol Hemoter (SI), 2012, Cuba	CEB-S	Desenvolvimento e validação de questionário específico para avaliar a QV de pacientes com DF (CEB-S)	Caso controle Nível IV
SCIELO	Vilela et al⁽²⁸28 Vilela RQB, Cavalcante FC, Cavalcante BF, Araujo DL, Lobo MM, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter[Internet]. 2012[cited 2016 Oct 12];34(6):442-6. Available from: http://www.scielo.br/pdf/rbhh/v34n6/v34n6a14.pdf http://www.scielo.br/pdf/rbhh/v34n6/v34n... ⁾. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brasil.	Rev. bras. Hematol Hemoter (B3), 2012, Brasil	SF36	Avaliar a QVRS de indivíduos com DF acompanhados em centros de referência em Alagoas, Brasil.	Transversal Nível VI

Pacientes que apresentaram menores escores de qualidade
de vida relacionada à saúde

Pacientes que apresentaram escores mais elevados
de qualidade de vida relacionada à saúde

- sintomáticos (n=1)⁽²2 Martínez-Triana R, Martínez-Rodríguez M, Guerra-Romero C, Guerra-González EM, Machado-Almeida T, Machín-García S, et al. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis. Rev Cuba Hematol Inmunol Hemoter [Internet]. 2012[cited 2016 May 28];28:385-97. Available from: http://scielo.sld.cu/pdf/hih/v28n4/hih07412.pdf
http://scielo.sld.cu/pdf/hih/v28n4/hih07... ⁾
- que apresentavam crises dolorosas frequentes (n=9)⁽²2 Martínez-Triana R, Martínez-Rodríguez M, Guerra-Romero C, Guerra-González EM, Machado-Almeida T, Machín-García S, et al. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis. Rev Cuba Hematol Inmunol Hemoter [Internet]. 2012[cited 2016 May 28];28:385-97. Available from: http://scielo.sld.cu/pdf/hih/v28n4/hih07412.pdf
http://scielo.sld.cu/pdf/hih/v28n4/hih07... ^,¹³13 McClish DK, Penberthy LT, Bovbjerg VE, Roberts JD; Aisiku IP, Levenson JL, et al. Health related quality of life in sickle cell patients: The PiSCES project. Health Qual Life Outcomes[Internet]. 2005[cited 2016 Jun 25];3(50):1-7. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1253526/
http://www.ncbi.nlm.nih.gov/pmc/articles...

14 Ballas SK, Barton FB, Waclawiw MA, Swerdlow P, Eckman JR, Pegelow CH, et al. Hydroxyurea and sickle cell anemia: effect on quality of life. Health Qual Life Outcomes[Internet]. 2006[cited 2016 May 27];4(59):1-8. Available from: http://www.hqlo.com/content/pdf/1477-7525-4-59.pdf
http://www.hqlo.com/content/pdf/1477-752... ^-¹⁵15 Asnani, M, Lipps G, Reid M. Utility of WHOQOL-BREF in measuring quality of life in sickle cell disease. Health Qual Life Outcomes[Internet]. 2009[cited 2016 Jul 26];7(75):1-6. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407
http://www.smj.org.sa/index.php/smj/arti...

16 van Tuijn CF, van Beers EJ, Schnog JJ, Biemond BJ. Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease. Am J Hematol [Internet]. 2010[cited 2016 Oct 13];85(7):532-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21731/epdf
http://onlinelibrary.wiley.com/doi/10.10...

17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10...

18 Anie KA, Grocott H, White L, Dzingina M, Rogers G, Cho G. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ Open[Internet]. 2012 [cited 2016 Oct 12];2(4):1-6. Available from: http://bmjopen.bmj.com/content/2/4/e001274.full.pdf+html
http://bmjopen.bmj.com/content/2/4/e0012... ^-¹⁹19 Ohara DG, Ruas G, Castro SS, Martins PR, Walsh IA. Musculoskeletal pain, profile and quality of life of individuals with sickle cell disease. Rev Bras Fisioter [Internet]. 2012[cited 2016 Oct 13];16(5):431-8. Available from: http://www.scielo.br/pdf/rbfis/v16n5/pt_aop040_12.pdf
http://www.scielo.br/pdf/rbfis/v16n5/pt_... ^,²⁵25 Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(5):325-31. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832312/pdf/rbhh-35-05-0325.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles... ^,²⁸28 Vilela RQB, Cavalcante FC, Cavalcante BF, Araujo DL, Lobo MM, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter[Internet]. 2012[cited 2016 Oct 12];34(6):442-6. Available from: http://www.scielo.br/pdf/rbhh/v34n6/v34n6a14.pdf
http://www.scielo.br/pdf/rbhh/v34n6/v34n... ⁾
- com forma grave da doença (n=8)⁽¹1 Asnani MR, Reid ME, Ali SB, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health [Internet]. 2008[cited 2015 Jul 21];8(2):1-9. Available from: http://www.rrh.org.au/publishedarticles/article_print_890.pdf
http://www.rrh.org.au/publishedarticles/... ^,²2 Martínez-Triana R, Martínez-Rodríguez M, Guerra-Romero C, Guerra-González EM, Machado-Almeida T, Machín-García S, et al. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis. Rev Cuba Hematol Inmunol Hemoter [Internet]. 2012[cited 2016 May 28];28:385-97. Available from: http://scielo.sld.cu/pdf/hih/v28n4/hih07412.pdf
http://scielo.sld.cu/pdf/hih/v28n4/hih07... ^,¹³13 McClish DK, Penberthy LT, Bovbjerg VE, Roberts JD; Aisiku IP, Levenson JL, et al. Health related quality of life in sickle cell patients: The PiSCES project. Health Qual Life Outcomes[Internet]. 2005[cited 2016 Jun 25];3(50):1-7. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1253526/
http://www.ncbi.nlm.nih.gov/pmc/articles... ^,¹⁶16 van Tuijn CF, van Beers EJ, Schnog JJ, Biemond BJ. Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease. Am J Hematol [Internet]. 2010[cited 2016 Oct 13];85(7):532-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21731/epdf
http://onlinelibrary.wiley.com/doi/10.10...

17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10... ^-¹⁸18 Anie KA, Grocott H, White L, Dzingina M, Rogers G, Cho G. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ Open[Internet]. 2012 [cited 2016 Oct 12];2(4):1-6. Available from: http://bmjopen.bmj.com/content/2/4/e001274.full.pdf+html
http://bmjopen.bmj.com/content/2/4/e0012... ^,²⁶26 Mastandréa EB, Lucchesi F, Kitayama MMG, Figueiredo MS, Citero VA. The relationship between genotype, psychiatric symptoms and quality of life in adult patients with sickle cell disease in São Paulo, Brazil: a cross-sectional study. Sao Paulo Med J[Internet]. 2015[cited 2016 Oct 22];133(5):421-7. Available from: http://www.scielo.br/pdf/spmj/v133n5/1516-3180-spmj-2015-00171105.pdf
http://www.scielo.br/pdf/spmj/v133n5/151... ^,²⁸28 Vilela RQB, Cavalcante FC, Cavalcante BF, Araujo DL, Lobo MM, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter[Internet]. 2012[cited 2016 Oct 12];34(6):442-6. Available from: http://www.scielo.br/pdf/rbhh/v34n6/v34n6a14.pdf
http://www.scielo.br/pdf/rbhh/v34n6/v34n... ⁾
- com internações frequentes (n=1)⁽²⁵25 Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(5):325-31. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832312/pdf/rbhh-35-05-0325.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾
- que necessitavam de transfusões de sangue (n=2)⁽²¹21 Ahmed AE, Alaskar AS, Al-Suliman AM, Jazieh AR, McClish DK, Al Salamah M, et al. Health-related quality of life in patients with sickle cell disease in Saudi Arabia. Health Qual Life Outcomes[Internet]. 2015[cited 2016 Jul 18];13:183. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4647668/
http://www.ncbi.nlm.nih.gov/pmc/articles... ^,²⁵25 Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(5):325-31. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832312/pdf/rbhh-35-05-0325.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾
- com comorbidades ou complicações impostas pela doença (n=3)⁽¹⁷17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10... ^,²⁰20 Al Jaouni SK, Al Muhayawi MS, Halawa TF, Al Mehayawi MS. Treatment adherence and quality of life outcomes in patients with sickle cell disease. Saudi Med J[Internet]. 2013[cited 2016 Jun 08];34(3):261-5. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407
http://www.smj.org.sa/index.php/smj/arti... ^,²⁵25 Pereira SAS, Brener S, Cardoso CS, Proietti ABFC. Sickle Cell Disease: quality of life in patients with hemoglobin SS and SC disorders. Rev Bras Hematol Hemoter[Internet]. 2013[cited 2016 Oct 25];35(5):325-31. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3832312/pdf/rbhh-35-05-0325.pdf
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾
- com menores taxas de hemoglobina (n=1)⁽²2 Martínez-Triana R, Martínez-Rodríguez M, Guerra-Romero C, Guerra-González EM, Machado-Almeida T, Machín-García S, et al. Cuestionario para evaluar la calidad de vida relacionada con la salud de adultos con drepanocitosis. Rev Cuba Hematol Inmunol Hemoter [Internet]. 2012[cited 2016 May 28];28:385-97. Available from: http://scielo.sld.cu/pdf/hih/v28n4/hih07412.pdf
http://scielo.sld.cu/pdf/hih/v28n4/hih07... ⁾
- que não aderiam ou com ou início tardio do tratamento (n=1)⁽²⁰20 Al Jaouni SK, Al Muhayawi MS, Halawa TF, Al Mehayawi MS. Treatment adherence and quality of life outcomes in patients with sickle cell disease. Saudi Med J[Internet]. 2013[cited 2016 Jun 08];34(3):261-5. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407
http://www.smj.org.sa/index.php/smj/arti... ⁾
- que se declararam vítimas de preconceito devido à doença (n=1)⁽³3 Roberti MDRF, Moreira CLNSO, Tavares RS, Borges Filho HM, Silva AG, Maia CHG, et al. Evaluation of quality of life of patients with sickle cell disease in a General Hospital of Goiás, Brazil, Brasil. Rev Bras Hematol Hemoter[Internet]. 2010[cited 2016 Apr 28];32:449-54. Available from: http://www.scielo.br/pdf/rbhh/v32n6/08.pdf
http://www.scielo.br/pdf/rbhh/v32n6/08.p... ⁾
- com transtorno de humor (n=1)⁽²⁸28 Vilela RQB, Cavalcante FC, Cavalcante BF, Araujo DL, Lobo MM, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter[Internet]. 2012[cited 2016 Oct 12];34(6):442-6. Available from: http://www.scielo.br/pdf/rbhh/v34n6/v34n6a14.pdf
http://www.scielo.br/pdf/rbhh/v34n6/v34n... ⁾

- com dupla heterozigose (HbSC) (n=3)⁽¹1 Asnani MR, Reid ME, Ali SB, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health [Internet]. 2008[cited 2015 Jul 21];8(2):1-9. Available from: http://www.rrh.org.au/publishedarticles/article_print_890.pdf
http://www.rrh.org.au/publishedarticles/... ^,¹⁷17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10... ^,²⁶26 Mastandréa EB, Lucchesi F, Kitayama MMG, Figueiredo MS, Citero VA. The relationship between genotype, psychiatric symptoms and quality of life in adult patients with sickle cell disease in São Paulo, Brazil: a cross-sectional study. Sao Paulo Med J[Internet]. 2015[cited 2016 Oct 22];133(5):421-7. Available from: http://www.scielo.br/pdf/spmj/v133n5/1516-3180-spmj-2015-00171105.pdf
http://www.scielo.br/pdf/spmj/v133n5/151... ⁾
- com formas menos graves da doença falciforme (n=3)⁽¹1 Asnani MR, Reid ME, Ali SB, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health [Internet]. 2008[cited 2015 Jul 21];8(2):1-9. Available from: http://www.rrh.org.au/publishedarticles/article_print_890.pdf
http://www.rrh.org.au/publishedarticles/... ^,⁷7 Keller SD, Yang M, Treadwell MJ, Werner EM, Hassell KL. Patient reports of health outcome for adults living with sickle cell disease: development and testing of the ASCQ-Me item banks. Health Qual Life Outcomes[Internet]. 2014[cited 2016 Apr 30];12(1):1-11. Available from: http://www.hqlo.com/content/12/1/125
http://www.hqlo.com/content/12/1/125... ^,¹⁷17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10... ⁾
- que viviam em área rural (n=1)⁽¹1 Asnani MR, Reid ME, Ali SB, Lipps G, Williams-Green P. Quality of life in patients with sickle cell disease in Jamaica: rural-urban differences. Rural Remote Health [Internet]. 2008[cited 2015 Jul 21];8(2):1-9. Available from: http://www.rrh.org.au/publishedarticles/article_print_890.pdf
http://www.rrh.org.au/publishedarticles/... ⁾
- casados (n=2)⁽⁵5 Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol[Internet]. 2008[cited 2016 May 30];83(7):558-62. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21146/pdf
http://onlinelibrary.wiley.com/doi/10.10... ^,²⁸28 Vilela RQB, Cavalcante FC, Cavalcante BF, Araujo DL, Lobo MM, Nunes FAT. Quality of life of individuals with sickle cell disease followed at referral centers in Alagoas, Brazil. Rev Bras Hematol Hemoter[Internet]. 2012[cited 2016 Oct 12];34(6):442-6. Available from: http://www.scielo.br/pdf/rbhh/v34n6/v34n6a14.pdf
http://www.scielo.br/pdf/rbhh/v34n6/v34n... ⁾- mulheres (n=1)⁽⁵5 Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol[Internet]. 2008[cited 2016 May 30];83(7):558-62. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21146/pdf
http://onlinelibrary.wiley.com/doi/10.10... ⁾
- empregados (n=3)⁽1^,¹⁸18 Anie KA, Grocott H, White L, Dzingina M, Rogers G, Cho G. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ Open[Internet]. 2012 [cited 2016 Oct 12];2(4):1-6. Available from: http://bmjopen.bmj.com/content/2/4/e001274.full.pdf+html
http://bmjopen.bmj.com/content/2/4/e0012... ^,²¹21 Ahmed AE, Alaskar AS, Al-Suliman AM, Jazieh AR, McClish DK, Al Salamah M, et al. Health-related quality of life in patients with sickle cell disease in Saudi Arabia. Health Qual Life Outcomes[Internet]. 2015[cited 2016 Jul 18];13:183. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4647668/
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾
- com renda superior a 30 mil dólares ao ano (n=1)⁽⁵5 Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol[Internet]. 2008[cited 2016 May 30];83(7):558-62. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21146/pdf
http://onlinelibrary.wiley.com/doi/10.10... ⁾
- com 12 anos ou mais de escolaridade (n=3)⁽⁵5 Adams-Graves P, Lamar K, Johnson C, Corley P. Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease. Am J Hematol[Internet]. 2008[cited 2016 May 30];83(7):558-62. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21146/pdf
http://onlinelibrary.wiley.com/doi/10.10... ^,¹⁸18 Anie KA, Grocott H, White L, Dzingina M, Rogers G, Cho G. Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease. BMJ Open[Internet]. 2012 [cited 2016 Oct 12];2(4):1-6. Available from: http://bmjopen.bmj.com/content/2/4/e001274.full.pdf+html
http://bmjopen.bmj.com/content/2/4/e0012... ^,²¹21 Ahmed AE, Alaskar AS, Al-Suliman AM, Jazieh AR, McClish DK, Al Salamah M, et al. Health-related quality of life in patients with sickle cell disease in Saudi Arabia. Health Qual Life Outcomes[Internet]. 2015[cited 2016 Jul 18];13:183. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4647668/
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾
- em tratamento com hidroxiureia (n=1)⁽¹⁴14 Ballas SK, Barton FB, Waclawiw MA, Swerdlow P, Eckman JR, Pegelow CH, et al. Hydroxyurea and sickle cell anemia: effect on quality of life. Health Qual Life Outcomes[Internet]. 2006[cited 2016 May 27];4(59):1-8. Available from: http://www.hqlo.com/content/pdf/1477-7525-4-59.pdf
http://www.hqlo.com/content/pdf/1477-752... ⁾
- que recebiam tratamentos eficazes para dor e depressão (n=1)⁽¹⁷17 Dampier C, LeBeau P, Rhee S, Lieff S, Kesler K, Ballas S, et al. Health-related quality of life in adults with sickle cell disease (SCD): a report from the comprehensive sickle cell centers clinical trial consortium. Am J Hematol[Internet]. 2011[cited 2016 Aug 18];86(2):203-5. Available from: http://onlinelibrary.wiley.com/doi/10.1002/ajh.21905/pdf
http://onlinelibrary.wiley.com/doi/10.10... ⁾
- com intervenção médica precoce e adesão ao tratamento (n=1)⁽²⁰20 Al Jaouni SK, Al Muhayawi MS, Halawa TF, Al Mehayawi MS. Treatment adherence and quality of life outcomes in patients with sickle cell disease. Saudi Med J[Internet]. 2013[cited 2016 Jun 08];34(3):261-5. Available from: http://www.smj.org.sa/index.php/smj/article/viewFile/771/407
http://www.smj.org.sa/index.php/smj/arti... ⁾
- com prática regular de atividade física (n=1)⁽²¹21 Ahmed AE, Alaskar AS, Al-Suliman AM, Jazieh AR, McClish DK, Al Salamah M, et al. Health-related quality of life in patients with sickle cell disease in Saudi Arabia. Health Qual Life Outcomes[Internet]. 2015[cited 2016 Jul 18];13:183. Available from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4647668/
http://www.ncbi.nlm.nih.gov/pmc/articles... ⁾.

[1] AUTOR CORRESPONDENTE Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Brasil

Brasil

Qualidade de vida em adultos com doença falciforme: revisão integrativa da literatura

RESUMO

Objetivo:

Método:

Resultados:

Conclusão: