Health related quality of life among adults living with sickle cell disease in Lagos, Nigeria
Keywords:Health related quality of life, WHOQOL-BREF, Sickle cell disease
Background: Sickle cell disease (SCD) is an inherited haemoglobinopathy which involves the inheritance of haemoglobin S with any other abnormal haemoglobin from both parents. Health related quality of life (HRQOL) provides the patient’s view of his/her own wellbeing. This study was aimed at determining health related quality of life in SCD patients attending Lagos State University Teaching Hospital, Ikeja, Nigeria using the World Health organization quality of life-BREF (WHOQOL-BREF) questionnaire.
Methods: This was a descriptive, cross sectional study in which an interviewer-administered WHOQOL-BREF questionnaire was used to assess health related quality of life of 250 SCD participants and 50 HbAA controls. The questionnaire assessment was based on physical, psychological, social and environmental domains. Data were analyzed using SPSS statistical software version 23.0. P value was considered to be statistically significant at<0.05.
Results: Respondents mean age was 31.67±12.07 years. SCD participants scored generally lower than controls, regarding domains on physical, psychological and social health, however scores were at par on environmental domain. Physical health score was better in females with SCD than males, while males with SCD had a better social relationship than females. Psychological health and environment scores were almost equal in both males and females with SCD.
Conclusions: Health related quality of care is generally poor in SCD participants compared with HbAA controls, physical health is poorer in males with SCD than in females, however, psychological, social and environmental domains are similar in both genders.
Fifty- Ninth World Health Assembly: Provisional Agenda Item 11.4. A59/9 24th April 2006 Geneva. World Health Organization, 2006.
Piel FB, Hay SI, Gupta S. Global burden of sickle cell anemia in children under five,2010-2050 modeling based on demographics excess mortality and interventions, Plos Med. 2013;10:e1001484.
Umar M. Sickle cell anaemia: Prevention and control.2010. Available at: http://www.gamji.com/article5000/NEW5314.HTM. Accessed on 01 August 2020.
Kaine WN, Udeozo IO. Incidence of sickle cell trait and Anaemia in Igbo Preschool Children. Nig J Paed 1981;8:87-9
The WHOQOL Group. The World Health Organization Quality Of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403-9.
Varni JW, Burwinkle TM, Seid M. The PedsQL™ 4.0 as a school population health measure: Feasibility, reliability, and validity. Qual Life Res. 2006;15:203-15.
Wison Schaeffer JJ, Gil KM, Burchinal M, Kramer KD, Nash KB, Orringer E, Strayhorn D. Depression, disease severity, and sickle cell disease. J Behav Med. 1999;22:115–26.
Ohaeri JU, Shokunbi WA, Akinlade KS, Dare LO. The psychosocial problems of sickle cell disease sufferers and their methods of coping. Soc Sci Med. 1995;40:955–60.
Jacob E. The pain experience of patients with sickle cell anemia. Pain Manag Nurs. 2001;2:74–83.
Anie KA, Steptoe A, Bevan DH. Sickle cell disease: Pain, coping and quality of life in a study of adults in the UK. Br J Health Psychol. 2002;7:331–44.
Anie KA, Steptoe A. Pain, mood and opioid medication use in sickle cell disease. Hematol J. 2003;4:71–3.
Thomas VJ, Taylor LM. The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups. Br J Health Psychol. 2002;7:345–63.
Akinbami, A. A Dosunmu,.AO “Haematological values in Homozygous Sickle Cell Disease in Steady State and Haemoglobin Phenotypes AA Controls in Lagos, Nigeria”. BMC Res Notes. 2012;5;396.
Akinyanju OO.A Profile of Sickle Cell Disease in Nigeria. Ann NY Acad Sci. ;1989:565:126-36
Akinbami A A, Uche I. E, Dosunmu O.A, Osikomaiya,I. B, Adediran A, “Haemoglobin F and A2 Profiles among Sickle Cell Anaemia Patients in LASUTH, Nigeria”. Ann Trop Pathol. 2018;9;26-31
Adewoyin AS. Management of Sickle Cell Disease: A Review for Physician Education in Nigeria: Anaemia; 2015;791498.
The World Health Organization Quality of Life (WHOQOL) BREF. World Health Organization. Available at: http://www.who.int/substance_abuse/ research_tools/en/english_whoqol.pdf. Accessed on 28 July 2020.
Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004;13:299–310.
Thomas VJ, Taylor LM. The psychosocial experience of people with sickle cell disease and its impact on quality of life: Qualitative findings from focus groups. Brit J Heal Psychol. 2002;7(3):345-63.
Ballas SK, Gupta K, Adams-Graves P. Sickle cell pain: a critical reappraisal. Blood 2012;120:3647-56.
Broome ME, Maikler V, Kelber S, Bailey P, Lea G. An intervention to increase coping and reduce health care utilization for school-age children and adolescents with sickle cell disease. J Nat Black Nurses Assoc. 2001;12(2):6-14.
Thomas VJ, Dixon AL, Milligan P, Thomas N. Cognitive‐behaviour therapy for the management of sickle cell disease pain: An evaluation of a community‐based intervention. Brit J Heal Psychol. 1999;4(3):209-29.
Scambler G. Health-related stigma. Soc Heal Illness. 2009;31(3):441–55.
Ola BA, Yates SJ, Dyson SM. Living with sickle cell disease and depression in Lagos, Nigeria: A mixed methods study. Soc Sci Med. 2016;161:27–36.
Côbo VD, Chapadeiro CA, Ribeiro JB, Moraes-Souza H, Martins PR. Sexuality and sickle cell anemia. Revista brasileira de hematologia e hemoterapia. 2013;35(2):89-93.
Amr MA, Amin TT, Al‑Omair OA. Health related quality of life among adolescents with sickle cell disease in Saudi Arabia. Pan Afr Med J. 2011;8:10.
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 Heal. 2008;8:890.