References
1. Piel FB, Hay SI, Gupta S, Weatherall DJ, Williams TN. Global Burden
of Sickle Cell Anaemia in Children under Five, 2010–2050: Modelling
Based on Demographics, Excess Mortality, and Interventions. PLOS
Medicine 2013; 10 (7): e1001484.
2. Sundd P, Gladwin MT, Novelli EM. Pathophysiology of Sickle Cell
Disease. Annual review of pathology 2019; 14 .
3. Sparkenbaugh E, Pawlinski R. Interplay between coagulation and
vascular inflammation in sickle cell disease. British Journal of
Haematology 2013; 162 (1): 3-14.
4. Zaidi AU, Glaros AK, Lee S, et al. A systematic literature review of
frequency of vaso-occlusive crises in sickle cell disease.Orphanet journal of rare diseases 2021; 16 (1).
5. Fingar KR, Owens PL, Reid LD, Mistry KB, Barrett ML. Characteristics
of Inpatient Hospital Stays Involving Sickle Cell Disease, 2000–2016:
Statistical Brief #251; 2006.
6. Piel FB, Steinberg MH, Rees DC. Sickle Cell Disease. N Engl J
Med 2017; 376 (16): 1561-73.
7. Shah N, Bhor M, Xie L, et al. Evaluation of Vaso-occlusive Crises in
United States Sickle Cell Disease Patients: A Retrospective Claims-based
Study. J Health Econ Outcomes Res 2019; 6 (3): 106-17.
8. Green NS, Barral S. Emerging science of hydroxyurea therapy for
pediatric sickle cell disease. Pediatric Research 2014;75 (1): 196-204.
9. Chonat S, Fields E, Baratz H, et al. Improvement in Red Blood Cell
Physiology in Children with Sickle Cell Anemia Receiving Voxelotor.Blood 2019; 134 : 2281.
10. Heeney MM, Rees DC, De Montalembert M, et al. Initial Safety and
Efficacy Results from the Phase II, Multicenter, Open-Label Solace-Kids
Trial of Crizanlizumab in Adolescents with Sickle Cell Disease (SCD).Blood 2021; 138 : 12.
11. Ataga KI, Kutlar A, Kanter J, et al. Crizanlizumab for the
Prevention of Pain Crises in Sickle Cell Disease. New England
Journal of Medicine 2016; 376 (5): 429-39.
12. Brandow AM, Liem RI. Advances in the diagnosis and treatment of
sickle cell disease. Journal of Hematology & Oncology 2022;15 (1): 20.
13. Maitra P, Caughey M, Robinson L, et al. Risk factors for mortality
in adult patients with sickle cell disease: a meta-analysis of studies
in North America and Europe. Haematologica 2017; 102 (4).
14. Steinberg MH, Barton F, Castro O, et al. Effect of hydroxyurea on
mortality and morbidity in adult sickle cell anemia: risks and benefits
up to 9 years of treatment. JAMA 2003; 289 (13).
15. Osunkwo I, Andemariam B, Minniti CP, et al. Impact of sickle cell
disease on patients’ daily lives, symptoms reported, and disease
management strategies: Results from the international Sickle Cell World
Assessment Survey (SWAY). Am J Hematol 2021; 96 (4):
404-17.
16. Chaturvedi S, DeBaun MR. Evolution of sickle cell disease from a
life-threatening disease of children to a chronic disease of adults: The
last 40 years. Am J Hematol 2016; 91 (1): 5-14.
17. Dampier C, Lieff S, LeBeau P, et al. Health-related quality of life
in children with sickle cell disease: a report from the Comprehensive
Sickle Cell Centers Clinical Trial Consortium. Pediatric blood &
cancer 2010; 55 (3).
18. RD H. Measurement and modeling of health-related quality of life. .
San Diego: Academic Press; 2010.
19. Palermo TM, Long AC, Lewandowski AS, Drotar D, Quittner AL, Walker
LS. Evidence-based Assessment of Health-related Quality of Life and
Functional Impairment in Pediatric Psychology. Journal of
Pediatric Psychology 2008; 33 (9): 983-96.
20. Health USDo, Human Services FDACfDE, Research, et al. Guidance for
industry: patient-reported outcome measures: use in medical product
development to support labeling claims: draft guidance. Health and
quality of life outcomes 2006; 4 .
21. Haverman L, Van Oers HL, P. Hijmans, C. Schepers, S. Sint Nicolaas,
S. Implementation of electronic patient reported outcomes in pediatric
daily clinical practice: The KLIK experience. Clinical Practice in
Pediatric Psychology 2014; 2.1 .
22. Haverman L, Engelen V Fau - van Rossum MAJ, van Rossum Ma Fau -
Heymans HSA, Heymans Hs Fau - Grootenhuis MA, Grootenhuis MA. Monitoring
health-related quality of life in paediatric practice: development of an
innovative web-based application. 2011; (1471-2431 (Electronic)).
23. Haverman L, van Rossum MA, van Veenendaal M, et al. Effectiveness of
a web-based application to monitor health-related quality of life.Pediatrics 2013; 131 (2): e533-43.
24. Palermo TM, Schwartz L, Drotar D, McGowan K. Parental report of
health-related quality of life in children with sickle cell disease.Journal of Behavioral Medicine 2002; 25 (3).
25. Hijmans CT, Fijnvandraat K, Oosterlaan J, Heijboer H, Peters M,
Grootenhuis MA. Double disadvantage: a case control study on
health-related quality of life in children with sickle cell disease.Health and quality of life outcomes 2010; 8 .
26. McClish DK, Penberthy LT, Bovbjerg VE, et al. Health related quality
of life in sickle cell patients: the PiSCES project. Health and
quality of life outcomes 2005; 3 .
27. Dale JC, Cochran CJ, Roy L, Jernigan E, Buchanan GR. Health-related
quality of life in children and adolescents with sickle cell disease.Journal of pediatric health care : official publication of
National Association of Pediatric Nurse Associates & Practitioners2010; 25 (4): 208-15.
28. Houwing ME, Muntendam MJ, Muilekom MM, et al. Health‐related quality
of life in infants, toddlers and young children with sickle cell
disease. Pediatric Blood & Cancer 2022; 69 (1).
29. Stokoe M, Zwicker HM, Forbes C, et al. Health related quality of
life in children with sickle cell disease: A systematic review and
meta-analysis. Blood Reviews 2022: 100982.
30. van Muilekom MM, Luijten MAJ, van Oers HA, et al. Paediatric
patients report lower health-related quality of life in daily clinical
practice compared to new normative PedsQL(TM) data. Acta Paediatr2021; 110 (7): 2267-79.
31. Panepinto JA, Pajewski NM, Foerster LM, Hoffmann RG. The performance
of the PedsQL generic core scales in children with sickle cell disease.Journal of pediatric hematology/oncology 2008; 30 (9):
666-73.
32. 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 Hematol2010; 85 (7): 532-5.
33. Stewart KA, Parshad-Asnani M, Wonkam A, et al. “Pain is
Subjective”: A Mixed-Methods Study of Provider Attitudes and Practices
Regarding Pain Management in Sickle Cell Disease Across Three Countries.Journal of Pain and Symptom Management 2021; 61 (3):
474-87.
34. Moody KL. Healthcare utilization and the quality of life of children
and adolescents with sickle cell disease. Pediatr Blood Cancer2022; 69 (8): e29685.
35. Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of
the Pediatric Quality of Life Inventory version 4.0 generic core scales
in healthy and patient populations. Med Care 2001;39 (8): 800-12.
36. Varni J. Scoring instructions. 2022.
https://www.pedsql.org/score.html (accessed 14 January 2022).
37. Hair J, Celsi M, Money A, Samouel P. The Essentials of Business
Research Method. Third ed: Routledge; 2016.
38. Field JJ, Ballas SK, Campbell CM, et al. AAAPT Diagnostic Criteria
for Acute Sickle Cell Disease Pain. J Pain 2019; 20 (7):
746-59.
39. Panepinto JA, Brousseau DC, Hillery CA, Scott JP. Variation in
hospitalizations and hospital length of stay in children with
vaso-occlusive crises in sickle cell disease. Pediatric Blood &
Cancer 2005; 44 (2): 182-6.
40. Platt OS, Thorington BD, Brambilla DJ, et al. Pain in sickle cell
disease. Rates and risk factors. N Engl J Med 1991;325 (1): 11-6.
41. Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute
care utilization and rehospitalizations for sickle cell disease.Jama 2010; 303 (13): 1288-94.
42. Campbell AD, Rizio AA, McCausland KL, et al. Frequency of
Vaso-Occlusive Crises Is Associated with Health-Related Quality of Life
in Pediatric Patients with Sickle Cell Disease: US Cross-Sectional
Surveys of Adolescents and Caregivers. Blood 2021;138 (Supplement 1): 490-.
43. Brandow AM, Brousseau DC, Pajewski NM, Panepinto JA. Vaso-occlusive
painful events in sickle cell disease: impact on child well-being.Pediatric blood & cancer 2010; 54 (1): 92-7.
44. Dale JC, Cochran CJ, Roy L, Jernigan E, Buchanan GR. Health-related
quality of life in children and adolescents with sickle cell disease.J Pediatr Health Care 2011; 25 (4): 208-15.
45. Okpala I, Thomas V, Westerdale N, et al. The comprehensiveness care
of sickle cell disease. Eur J Haematol 2002; 68 (3):
157-62.
46. Ramsey LT, Woods KF, Callahan LA, Mensah GA, Barbeau P, Gutin B.
Quality of life improvement for patients with sickle cell disease.Am J Hematol 2001; 66 (2): 155-6.
47. Strickland OL, Jackson G, Gilead M, McGuire DB, Quarles S. Use of
focus groups for pain and quality of life assessment in adults with
sickle cell disease. J Natl Black Nurses Assoc 2001;12 (2): 36-43.
48. 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 (Part 3): 345-63.
49. 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.
50. Abadesso C, Pacheco S, Machado MC, Finley GA. Health-Related Quality
of Life Assessments by Children and Adolescents with Sickle Cell Disease
and Their Parents in Portugal. Children (Basel) 2022;9 (2).
51. Crosby LE, Joffe NE, Irwin MK, et al. School Performance and Disease
Interference in Adolescents with Sickle Cell Disease. Research,
Advocacy, and Practice for Complex and Chronic Conditions 2015;34 (1): 14-30.
52. Smith KE, Patterson CA, Szabo MM, Tarazi RA, Barakat LP. Predictors
of Academic Achievement for School Age Children with Sickle Cell
Disease. Adv Sch Ment Health Promot 2013; 6 (1): 5-20.
53. Heitzer AM, Hamilton L, Stafford C, et al. Academic Performance of
Children With Sickle Cell Disease in the United States: A Meta-Analysis.Front Neurol 2021; 12 : 786065.
54. Hood AM, Kölbel M, Stotesbury H, et al. Biopsychosocial Predictors
of Quality of Life in Paediatric Patients With Sickle Cell Disease.Frontiers in Psychology 2021; 12 .