- 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...
)
|