References and Useful Reading

Adams S (1996)
Sickle Cell Disease in Pregnancy - Caring for the pregnant woman with sickle cell crisis Professional Care of Mother & Child 6 (2): 34 - 36

Anie K, Fotopoulus C (1998)
Coping with Sickle Cell Disease and Pain: A Self-Help Manual London: Brent Sickle Cell & Thalassaemia Centre www.sickle-psychology.nwlh.nhs.uk

Anie K, Fotopoulus C (1998)
Coping with Sickle Cell Disease and Pain - A self Help Manual for Children London: Brent Sickle Cell & Thalassaemia Centre www.sickle-psychology.nwlh.nhs.uk ISBN: 0 9531902 3 4

Anie K, Smalling B, Fotopoulos C (2000)
Group work: Children and adolescents with sickle cell. Community Practitioner 73 (4): 556 – 558

Anionwu E N (2000)
Review: Patient perceptions of crisis pain management in sickle cell disease: a cross cultural study. Nursing Times Research 5 (3): 214

Anionwu E N, Atkin K (2001)
The Politics of Sickle Cell and Thalassaemia UK: Open University Press

Arya R, Bellingham A (1994)
Sickle Cell Disease and Surgery. Care of the Critically Ill 10(2):84 – 87

Atkin K, Ahmad W (1999)
The experience of young people with a sickle cell disorder or thalassaemia major

Atkin K, Ahmad W I U (2001)
Living a normal life: young people coping with thalassaemia major and sickle cell disorder Social Science and Medicine 53: 615 – 626

Avila P (2000)
Acute Chest Syndrome in Sickle Cell Disease. The New England Journal of Medicine 343 (18): 1336 - 1337

Bain B J (2001)
Haemoglobinopathy Diagnosis Blackwell Science Ltd: UK

Ballas S.K (1990)
Treatment of Pain in Adults with Sickle Cell Disease. American Journal of Haematology 34 49-54

Ballas S K (1998)
Sickle Cell Pain: Progress in Pain Research and Management 11 Seattle: International Association for the study of Pain Press

Ballas S K (1998)
Sickle Cell Pain USA: International Association for the Study of Pain

Ballas S K, (2000)
Hydration of sickle erythrocytes using a herbal extract (pfaffia paniculata) in vitro. British Journal of Haematology 111: 359 - 362

Bain B J (2001)
Haemoglobinopathy Diagnosis London: Blackwell Science Ltd

Beris P, Darbellay R, Extermann P (1995)
Prevention of B-Thalassaemia Major and Hb Bart's Hydrops Fetalis Syndrome Seminars in Haematology 32 (4): 224 - 261

Bloom M (1995)
Understanding Sickle Cell Disease USA: University of Mississippi

British Medical Association (1998)
Human Genetics - Choice and Responsibility Oxford: Oxford University Press

Brookoff D, Polomano R (1992)
Treating Sickle Cell Pain like Cancer Pain Annals of International Medicine 116: 364 – 368

Burghardt - Fitzpatrick G et al (1989)
Pain behaviour contracts: Effective management of the adolescent in sickle cell crisis Journal of Paediatric Nursing 4 (5): 320 - 324

Cain J, Hammes B (1994)
Ethics and Pain Management: respecting Patient Wishes Journal Of Pain and Symptom Management 9 (3) 160 -165, APRIL

Canam C (1993)
Common Adaptive Tasks facing Parents of Children with Chronic Conditions, Journal of Advanced Nursing, 18: 46 – 53

Chami B, Braconnier F, Riou J et al (1995)
Geographical distribution of 119 alleles of the a and b globin genes detected in 432 French Caucasian carriers of haemoglobin variant Annales de Genetique 38 (4): 206 - 216

Charache S, Terrin M, Moore R D et al (1995)
Effect of Hydroxyurea on the frequency of painful crises in sickle cell anaemia The New England Journal of Medicine 332 (20): 1317 – 1322

Clubb R (1993)
Chronic Sorrow - Adaptation Patterns of Parents with Chronically Ill Children, Paediatric Nursing 17 (5) 461 - 466 17

Davies S (1988)
Obstetric implications of sickle cell disease Midwife, Health Visitor and Community Nurse 24 (9): 361 – 363

Davies S C, Roberts-Harewood M (1997)
Blood transfusion in sickle cell disease Blood Reviews 11: 57 – 71

Davies S C, Oni L (1997)
Management of patients with sickle cell disease BMJ 315:656 - 660

Davies S C, Cronin E, Gill M, Greengross P, Hickman M, Normand C. (2000)
Screening for sickle cell disease and thalassaemia: a systematic review with supplementary research Health Technol Assess 4(3) (Can be downloaded from website www.hta.nhsweb.nhs.uk)

Davies S C, Oni L (2001)
Sickle cell Disease screening programs - Integration into managed care. Dis Manage Health Outcomes 9(6): 296 – 304

Department of Health (1993)
Report of a working party of the Standing Medical Advisory Committee on Sickle Cell, Thalassaemia and other Haemoglobinopathies London: HMSO

Department of Health (2000)
The NHS Plan – A plan for investment, a plan for reform London: DoH

Department of Health (2008)
NHS Next Stage Review Final Report London: The Stationery Office

Eboh W, van den Akkar (1994)
Ante-Natal care of Women with Sickle Cell Disease British Journal Of Midwifery 2 (1): 6 - 11

Embury S H., Hebbel R P., Mohandas N., Steinberg M H (1994)
Sickle Cell Disease – Basic Principles and Clinical Practice New York: Raven Press

Emery J, Hayflick S (2001)
The challenge of integrating genetic medicine into primary care British Medical Journal 322: 1027- 1030

Emery J (2001)
Is informed choice in genetic testing a different breed of informed decision-making? A discussion paper Health Expectations 4:81 – 86

Falleta J, Woods G, Verter J (1995)
Discontinuing penicillin prophylaxis in children with sickle cell anaemia The Journal of Pediatrics 127 (5): 685 – 690

Gelehter T D, Colins F S (1990)
Principles of Medical Genetics London: Williams & Wilkins

Ghould D, Thomas V, Darlinson M (2000)
The role of the haemoglobinopathy nurse counsellor: an exploratory study Journal of Advanced Nursing 31(1): 157 – 164

Gil K, Thompson R Keith B et al (1993)
Sickle Cell Disease in Children and adolescents: Change in Pain Frequency and Coping Strategies over Time. Journal of Paediatric Psychology 18 (5): 621 – 637

Gill, K.M., Abrams, M.R., Phillips, G., Keefe, F.J. (1989)
Sickle cell disease pain: relation of coping strategies to adjustment Journal of Counselling and Clinical Psychology. 57: 725-731

Gill F M, Sleeper L, Weiner S J et al (1995)
Clinical Events in the First Decade in a cohort of Infants with Sickle cell Disease 86 (2): 776 – 783

Gill, K.M., Williams, D.A., Thompson, Jr. R.J., Kinney, T.R.(1991)
Sickle cell disease in children and adolescents: The relation of child and parent coping strategies to adjustment The Journal of Pediatric Psychology 16: 643-663

Green J, Statham H (1996)
Psychological aspects of prenatal screening and diagnosis in Marteau T and Richards M The Troubled Helix - Social and Psychological implications of the new human genetics Cambridge: Cambridge University Press Pages: 140-163

Harcombe J & Armstrong V (2008)
Fertility in β thalassaemia major: a report of 16 pregnancies, pre-conceptual evaluation and a review of the literature British Journal of Obstetrics and Gynaecology 102: 625 - 629

Higgs D, Weatherall D J (1993)
Bailliere's Clinical Haematology International Practice and Research - The Haemoglobinopathies London: Bailliere Tindall

Howard R, Lillis C, Tuck S (1993)
Contraceptive, Counselling and Pregnancy in Women with Sickle Cell Disease BMJ 306: 1735 - 1737

Human Genetics Commission (2000)
Whose Hands on Your Genes? UK: Department of Health

Hurtig A et al (1986)
Psychosocial adjustment in Children and Adolescents with Sickle Cell Disease British Medical Journal 306: 1735 - 1737

Huisman THJ, Carver MFH, Efremov GD (1996)
The Syllabus of Human Haemoglobin Variants Augusta USA: Sickle Cell Anaemia Foundation Online. Available; globin.cse.psu.edu/html/huisman/variants

Jensen C E, Tuck S, Wonke B (1995)
Sickle cell anaemia in adults: Avoiding crises, organ damage Annals of Internal Medicine 128 (12:1):1055 - 1056

Jones Laurie (1998)
Sickle cell anaemia in adults: Avoiding crises, organ damage Annals of Internal Medicine 128 (12:1):1055 - 1056

Konotey-Ahulu F I D (1992)
The Sickle Cell Disease Patient London: Macmillan Press Limited

Lehmann H, Huntsman R G (1974)
Man’s Haemoglobins-including the haemoglobinopathies and their investigation Amsterdam: North Holland Publishing Company

Lorenzi E A (1993)
The effects of comprehensive guidelines for the care of patients in crisis on the nurses' knowledge base and job satisfaction for care given Journal of Advanced Nursing 18: 1923 – 1930

Marteau T M (1995)
Towards informed decisions about prenatal testing: A review Prenatal Diagnosis 15:1215 1226

Marteau T, Richards M (1996)
The troubled helix - Social and Psychological implications of the new human genetics Cambridge: Cambridge University Press

Marteau TM, Dormandy E, Michie S (2001)
A measure of informed choice Health Expectations 4:99-108

Marteau T M, Lerman C (2001)
Genetic risk and behavioural change British Medical Journal 322: 1056 - 1059

Maxwell K, Streetly A, Oni L (1997)
Fair shares for London. Modern Midwife 7(11):15-19

Maxwell, K., Streetly, A., Bevan, D. (1999)
Experiences of hospital care and treatment seeking behaviour for pain from sickle cell disease- qualitative study. BMJ. 318 (12): 1585-1590.

Maxwell K, Streetly A (1998)
Living with Sickle Pain London: Guy's and St Thomas School of Medicine

Midence K, Elander J (1993)
Sickle Cell Disease - A Psychosocial Approach UK: Radcliffe Medical Press

Modell B, Berdoukas V (1984)
The Clinical Approach to Thalassaemia London: Grune & Stratton

Modell, B (1990)
The ethics of prenatal diagnosis and genetic counselling World Health Forum 11:179-182

Modell, B. Petrou M, Layton M et al (1997)
Audit of prenatal diagnosis for haemoglobin disorders in the United Kingdom: the first 20 years BMJ 315: 779-784

National Confidential Enquiry into Patient Outcomes and Deaths (NCEPOD) (2008)
A Sickle Crisis? National Confidential Enquiry into Patient Outcome and Death London: NCEPOD

National Institute for Health and Clinical Excellence (2008)
Antenatal care: Routine care for the healthy pregnant woman – Clinical Guideline London: National Institute for Health and Clinical Excellence

National Institute for Health and Clinical Excellence (2012)
Sickle cell acute painful episode: management of an acute painful sickle cell episode in hospital – Clinical Guideline: 143 guidance.nice.org.uk/cg143

NHS Sickle and Thalassaemia Screening Programme (2006)
Sickle Cell & Thalassaemia: Handbook for Laboratories London: NHS Sickle & Thalassaemia Screening Programme

Nwezi E (2001)
Malevolent Ogbanje: recurrent reincarnation or sickle cell disease? Social Science & Medicine 52(9): 1403 - 1416

Ohene-Frempong K, Weiner S J, Sleeper L A, Miller S S T, Embury S, Moohr J W, Wether D L, Pegelow C H, Gill F M (1998)
Cerebrovascular accidents in sickle cell disease, rates and risk factors. Blood. 91: 288-94

Ohnishi S T, Ohnishi T, Ogunmola G B (2000)
Sickle Cell Anaemia: A potential nutritional approach for a molecular disease Nutrition 16:330-338

Olivieri N F, Brittenham G M, Matsui D et al (1995)
Iron Chelation Therapy with Oral Deferiprone in Patients with Thalassaemia Major The New England Journal of Medicine 332 (14): 918 - 922

Oni L, Bent S (1998)
Sickle Cell Disease Nursing Times Systems & Diseases 94 (37): 50-54

Oni L (1998)
Sickle cell disease and the Carer-Client relationship Nursing Times 94 (26):64 – 65

Oni L, Okuyiga E, Sweeney M (2001)
Care and Management of Women with Sickle Cell Disease in Maternity Care Settings London: Brent Sickle Cell & Thalassaemia Centre ISBN: 0 9531902 2 6

Oni L (2004)
Community Health Care Nurses Introduction to Sickle Cell & Thalassaemia London: Brent Sickle Cell & Thalassaemia Centre ISBN: 0 9531902 5 0

Oni L (2004)
Midwives Introduction to Sickle Cell & Thalassaemia London: Brent Sickle Cell & Thalassaemia Centre ISBN: 0 9531902 4 2

Oni L, Dick M, Smalling B, Walters J 2ND Edition (2006)
Care and management of your child with sickle cell disease - A parents’ guide Brent Sickle Cell & Thalassaemia Centre ISBN: 0 9531902 7 7 (available at Brent Centre)

Oni L, Brown M, Rochester-Peart C (in press)
Care and Management of People with Sickle Cell, Thalassaemia and Related Conditions UK: Elsevier Publications

Oni L (2010)
Interpreting Common Haemoglobinopathy Test results – A Guide for Primary Health Care Professionals London: Brent Sickle Cell & Thalassaemia Centre London: Brent Sickle Cell & Thalassaemia Centre

Oni L (in press)
Acute Care Nurses Introduction to Sickle Cell & Thalassaemia

Platt O S (2000)
The acute chest syndrome of sickle cell disease New England Journal of Medicine 342 (25):1904-1907

Platt O S, Bruce D, Thorington M S et al (1991)
Pain in Sickle Cell Disease Rates and Risk Factors The New England Journal of Medicine 325 (1): 11 - 16

Powars D R (2000)
Management of cerebral vasculopathy in children with sickle cell anaemia British Journal of Haematology 108:666 – 678

Psihogios V M, Rodda C, Reid E, et al (2002)
Reproductive health in individuals with homozygous Beta Thalassaemia: Knowledge, attitudes and behaviour. Fertility & Sexuality 77(1): 119-127

Raghavan M, Davies S C (2002)
The management of haemoglobinopathies Current Paediatrics 12: 290 297

Riddington C, Owusu-Ofori S (2002)
Prophylactic antibiotics for preventing pneumococcal infection in children with sickle cell disease (Cochrane Review) In: The Cochrane Library, Issue 3, Oxford: Update Software

Savona-Ventura C, Bonello F (1994)
Beta Thalassaemia Syndromes and Pregnancy Obstetrical and Gynaecological Survey 49 (2): 129-137

Schechter N L, Berde C B, Yaster M (Editors) (1993)
Pain in Infants, Children and Adolescents London: Williams and Wilkins

Serjeant G H, Serjeant B (2001) (3rd edition)
Sickle Cell Disease Oxford : Oxford Medical Publication

Serjeant G H (2001)
A guide to sickle cell disease Jamaica: Sickle Cell Trust

Shiloh S (2000)
Decision making in the context of genetic risk in Marteau T and Richards M The Troubled Helix - Social and Psychological implications of the new human genetics Cambridge: Cambridge University Press Pages: 82-103

Sickle Cell Society (2008)
Standards for the clinical care of adults with sickle cell disease in the UK London: Sickle Cell Society

Smith-Wynter L (2000)
Patient perceptions of crisis pain management in sickle cell disease: a cross cultural study Nursing Times Research 5 (3) : 204 - 213

Steinberg M H, Forget B G, Higgs D R, Nagel R L (2001) (Eds)
Disorders of haemoglobin - Genetics, Pathophysiology and clinical management Cambridge UK: Cambridge University Press

Streetly A, Maxwell K, Mejia A (1997)
Sickle Cell Disorders in Greater London- a needs assessment of screening and care services London: Mark’s and Spencer

Thibodeau G A, Patton K T (1993)
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Thomas P, Oni L, Alli M, St. Hilaire J, Smith A, Alli M, Banarsee R, Leavey C (2005)
Antenatal screening for haemoglobinopathies in primary care – a whole system participatory action research project British Journal of General Practice June

Tortora G J, Grabowski S R (2003)
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Tuck S (1985)
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Tuck S.M, Jensen C.E, Wonke B. Yardumian A (1998)
Pregnancy Management and Outcomes in Women with Thalassaemia Major Journal of Pediatric Endocrinology and Metabolism 11(Supplement 3): 923-928.

UK Forum for Haemoglobin Disorders (2006)
Sickle Cell Disease in Childhood – Standards and Guidelines for clinical care London: UK Forum

UK Newborn Screening Programme (2008)
Guidelines for newborn blood spot sampling London: UKNSP

UK Thalassaemia Guidelines (UK Thalassaemia Society 2008)
Standards for the clinical care of children and adults with thalassaemia in the UK London: UKTS

US Department of Health and Human Sciences (1993)
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Valler A H (1994)
Street addicts and patients with pain: Similarities and differences Clinical Nurse Specialists 8 (1): 11 - 15

Vichinsky E P, Lynne E D N, Earles A N, et al (2000)
Causes and outcomes of the acute chest syndrome in sickle cell disease The New England Journal of Medicine 342 (25): 1855-1865

Walding M (1991)
Pain, Anxiety and Powerlessness, Journal of Advanced Nursing 16: 338-397

Ware M A, Hambleton I, Ochaya, Serjeant G (1999)
Day - care management of sickle cell painful crisis in Jamaica: a model applicable elsewhere British Journal of Haematology 104: 93 – 96

Weatherall D J, Clegg J B (2001)
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Weatherall D J (1997)
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Weatherall D J, Clegg J B (2001)
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World Health Organization (1994)
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COMPILED BY: LOLA ONI,
NURSE DIRECTOR / LECTURER,
BRENT SICKLE CELL & THALASSAEMIA CENTRE,
122 HIGH STREET,
HARLESDEN,
LONDON NW10 4SP
TEL: 020 8453 2050

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