Cualidad de vida en adultos con enfermedad falciforme: revisión integradora de la 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 CORRESPONDING AUTHOR Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Universidade Federal de Mato Grosso do Sul, Postgraduate Program in Health and Development in the Central-West Region. Campo Grande, Mato Grosso do Sul, Brazil.

Maria Lucia Ivo

Universidade Federal de Mato Grosso do Sul, Postgraduate Program in Health and Development in the Central-West Region. Campo Grande, Mato Grosso do Sul, Brazil.

Maria Stella Figueiredo

Universidade Federal de São Paulo, Department of Clinical and Experimental Oncology. São Paulo, Brazil.

Maria Auxiliadora de Souza Gerk

Universidade Federal de Mato Grosso do Sul, Center for Biological and Health Sciences, Undergraduate Program in Nursing. Campo Grande, Mato Grosso do Sul, Brazil.

Cristina Brandt Nunes

Universidade Federal de Mato Grosso do Sul, Center for Biological and Health Sciences, Undergraduate Program in Nursing. Campo Grande, Mato Grosso do Sul, Brazil.

Fernando de Freitas Monteiro

Associação Beneficente de Campo Grande, Medical Residency in Psychiatry. Campo Grande, Mato Grosso do Sul, Brazil

CORRESPONDING AUTHOR Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Base	Author, title of article	Periodic, classification, year and country	Scale	Objectives	Design and level of evidence
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	To evaluate the QOL of patients with DF participating in The Pain in Sickle Cell Epidemiology Study (PiSCES)	Cohort - groups: asthma, cystic fibrosis and dialysis.Level IV
MEDLINE	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	To evaluate the effect of hydroxyurea (HU) on the quality of life of patients with sickle cell anemia (AF)	Clinical, double-blind, randomized trialLevel 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	To evaluate the structural component of SF36 in Jamaican patients with DF	Randomized cohort, random sampleLevel 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	To develop the Sickle Disease Impact Measurement Scale (SIMS), an instrument to measure the quality of life of adults with DF	Case control - creation and testing of scale with two groups.Level 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	To know the differences between the QOL of patients with FD who live in urban and rural areas	Analytical observational Level 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	To study the usefulness of WHOQOL-Bref in the QOL measurement of patients with DF	Control caseLevel 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, Netherlands	SF36	To evaluate prospectively (5 years) QoL in a cohort of patients with FD, related to chronic organ damage, pain rate and history of complications related to the disease	Cohort Level 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	To examine the relationship between the various complications related to FD and quality of life (QoL)	Cohort Level 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	Characterize the relationship of pain with mood and QOL at admission, before discharge and at one post-discharge week	Transversal Level 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 Brazil	WHOQOL Breef	To verify the relationship between musculoskeletal pain, considering its body location, social, economic and QoL characteristics in individuals with DF	Transversal Level 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, Saudi Arabia	WHOQOL Breef	To evaluate the HRQOL of patients with FD and to measure the impact of adherence to treatment on the complications of the disease, severity, crises, and outcomes	Transversal Level 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	Develop Adult Sickle Cell Quality of Life Measurement System (ASCQ-Me)	Transversal Level 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. Saudi Arabia	SF36	Describe the characteristics of Saudi patients with FD and their impact on QoL	Transversal Level 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, Brazil	WHOQOL Breef	To investigate whether the concept of QoL advocated by the World Health Organization (WHO) could be used for patients with DF	Qualitative VI
	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, Brazil	WHOQOL Breef	To evaluate the QOL of patients with sickle cell disease treated at Hospital das Clínicas, Universidade de Goiás	Transversal Level 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, Brazil	SF36	To describe the sociodemographic profile and the impact of the disease on the QOL of patients with AF	Transversal Level 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, Brazil	WHOQOL Breef	To describe and analyze the QoL of patients with sickle cell anemia at a hematology clinic of a school hospital in the Southeast Region, Brazil	Transversal Level 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, Brazil	WHOQOL Breef	To evaluate the QoL of patients with DF (HbSS and HbSC) and their clinical and sociodemographic characteristics	Transversal Level 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, Brazil	SF36	To describe the psychiatric symptomatology present in the Brazilian patient with sickle cell disease and to evaluate the relationship of these symptoms with the genotype of the disease and the subject's HRQL	Transversal Level 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	To determine the HRQoL of adult patients with DF who receive care at the Institute of Hematology and Immunology (IHI)	Control case IV
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	Development and validation of a specific questionnaire to evaluate the QOL of patients with DF (CEB-S)	Control case Level 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, Brazil	SF36	To evaluate the HRQoL of individuals with FD followed at reference centers in Alagoas, Brazil	Transversal Level VI

Patients who presented lower health-related quality of life scores

Patients who presented higher health-related quality of life scores

- symptomatic (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... ⁾
- who had frequent painful crises (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... ⁾
- with severe form of the disease (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... ⁾
- with frequent hospitalizations (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... ⁾
- who needed blood transfusions (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... ⁾
- with comorbidities or complications imposed by the disease (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... ⁾
- with lower hemoglobin levels (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... ⁾
- who did not adhere to or with late onset of treatment (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... ⁾
- who declared themselves victims of prejudice due to the disease (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... ⁾
- with mood disorder (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... ⁾

- with double heterozygosity (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... ⁾
- with less severe forms of sickle cell disease (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... ⁾
- who lived in rural areas (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/... ⁾
- married (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... ⁾
- women (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... ⁾
- employees (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/... ^,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... ⁾
- with income above $ 30,000 per year (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... ⁾
- with 12 years of schooling or more (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... ⁾
- under treatment with hydroxyurea (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... ⁾
- who received effective treatments for pain and depression (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... ⁾
- with early medical intervention and adherence to treatment (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... ⁾
- with regular physical activity (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] CORRESPONDING AUTHOR Sandra Luzinete Felix de Freitas E-mail: sandra.freitas@ufms.br

Brasil

Brasil

Cualidad de vida en adultos con enfermedad falciforme: revisión integradora de la literatura

RESUMEN

Objetivo:

Método:

Resultados:

Conclusión: