Developing a multidisciplinary Young Women's Blood Disorders Program: A single-centre approach with guidance for other centres

Haemophilia

Volumn 22, Issue 2, 2016, Pages 199-207

  Zia, A ^a,b   Lau, M ^a,b   Journeycake, J ^a,b   Sarode, R ^a   Marshall, J ^b   De Simone, N ^a   Wilson, E ^a   Winborn, A ^b   Kouides, P ^c  

^a UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER   (United States)

^b CHILDREN S MEDICAL CENTER   (United States)

^c UNIVERSITY OF ROCHESTER SCHOOL OF MEDICINE AND DENTISTRY   (United States)

Author keywords

Abnormal uterine bleeding; Bleeding disorders; Comprehensive care; Heavy menstrual bleeding

Indexed keywords

ORAL CONTRACEPTIVE AGENT;

ARTICLE; BLEEDING DISORDER; CLINICAL PRACTICE; CLINICAL PROTOCOL; DIETITIAN; FEMALE; HEALTH CARE DELIVERY; HEMODYNAMICS; HUMAN; MEDICAL SPECIALIST; MENORRHAGIA; MENSTRUATION; NURSE; NURSE MANAGER; OUTCOME ASSESSMENT; PATIENT ASSESSMENT; PATIENT CARE; PATIENT SELECTION; PRACTICE GUIDELINE; PRIORITY JOURNAL; QUALITY OF LIFE; UTERUS BLEEDING; VON WILLEBRAND DISEASE;

EID: 84960353051     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/hae.12836     Document Type: Article

References (47)

1. James AH, Ragni MV, Picozzi VJ. Bleeding disorders in premenopausal women: (another) public health crisis for hematology? Hematology 2006; 2006: 474-85.
2. Kadir RA, Sabin CA, Pollard D, Lee CA, Economides DL. Quality of life during menstruation in patients with inherited bleeding disorders. Haemophilia 1998; 4: 836-41.
3. Kouides PA, Phatak PD, Burkart P et al. Gynaecological and obstetrical morbidity in women with type I von Willebrand disease: results of a patient survey. Haemophilia 2000; 6: 643-8.
4. Cote I, Jacobs P, Cumming D. Work loss associated with increased menstrual loss in the United States. Obstet Gynecol 2002; 100: 683-7.
5. Liu Z, Doan QV, Blumenthal P, Dubois RW. A systematic review evaluating health-related quality of life, work impairment, and health-care costs and utilization in abnormal uterine bleeding. Value Health 2007; 10: 183-94.
6. Rodeghiero F, Castaman G, Dini E. Epidemiological investigation of the prevalence of von Willebrand's disease. Blood 1987; 69: 454-9.
7. Shaw RW. Treating the patient with menorrhagia. Br J Obstet Gynaecol 1994; 101(Suppl 11): 1-2.
8. Obstetricians ACoPB-GACo, Gynecologists. ACOG practice bulletin: management of anovulatory bleeding. Int J Gynaecol Obstet 2001; 72: 263-71.
9. American Academy of Pediatrics Committee on A, American College of O, Gynecologists Committee on Adolescent Health C, Diaz A, Laufer MR, Breech LL. Menstruation in girls and adolescents: using the menstrual cycle as a vital sign. Pediatrics 2006; 118: 2245-50.
10. Plug I, Mauser-Bunschoten EP, Brocker-Vriends AH et al. Bleeding in carriers of hemophilia. Blood 2006; 108: 52-6.
11. Blanchette VS, Key NS, Ljung LR et al. Definitions in hemophilia: communication from the SSC of the ISTH. J Thromb Haemost 2014; 12: 1935-9.
12. Paroskie A, Gailani D, DeBaun MR, Sidonio RF Jr. A cross-sectional study of bleeding phenotype in haemophilia A carriers. Br J Haematol 2015; 170: 223-8.
13. Kirtava A, Crudder S, Dilley A, Lally C, Evatt B. Trends in clinical management of women with von Willebrand disease: a survey of 75 women enrolled in haemophilia treatment centres in the United States. Haemophilia 2004; 10: 158-61.
14. Baker JR, Riske B, Drake JH et al. US Hemophilia Treatment Center population trends 1990-2010: patient diagnoses, demographics, health services utilization. Haemophilia 2013; 19: 21-6.
15. Khamees D, Klima J, O'Brien SH. Population screening for von Willebrand disease in adolescents with heavy menstrual bleeding. J Pediatr Mother Care 2015; 166: 195-7.
16. Lee CA, Chi C, Pavord SR et al. The obstetric and gynaecological management of women with inherited bleeding disorders-review with guidelines produced by a taskforce of UK Haemophilia Centre Doctors' Organization. Haemophilia 2006; 12: 301-36.
17. Lee CA, Chi C, Shiltagh N et al. Review of a multidisciplinary clinic for women with inherited bleeding disorders. Haemophilia 2009; 15: 359-60.
18. Winikoff R, Amesse C, James A, Lee C, Pollard D. The role of haemophilia treatment centres in providing services to women with bleeding disorders.Haemophilia 2004; 10(Suppl 4): 196-204.
19. Munro MG, Critchley HO, Broder MS, Fraser IS, Disorders FWGoM. FIGO classification system (PALM-COEIN) for causes of abnormal uterine bleeding in nongravid women of reproductive age. Int J Gynaecol Obstet. 2011; 113: 3-13.
20. Warner PE, Critchley HO, Lumsden MA, Campbell-Brown M, Douglas A, Murray GD. Menorrhagia I: measured blood loss, clinical features, and outcome in women with heavy periods: a survey with follow-up data. Am J Obstet Gynecol 2004; 190: 1216-23.
21. Drews CD, Dilley AB, Lally C, Beckman MG, Evatt B. Screening questions to identify women with von Willebrand disease. J Am Med Women's Assoc 2002; 57: 217-8.
22. Sramek A, Eikenboom JC, Briet E, Vandenbroucke JP, Rosendaal FR. Usefulness of patient interview in bleeding disorders. Arch Intern Med 1995; 155: 1409-15.
23. Higham JM, O'Brien PM, Shaw RW. Assessment of menstrual blood loss using a pictorial chart. Br J Obstet Gynaecol 1990; 97: 734-9.
24. Janssen CA, Scholten PC, Heintz AP. A simple visual assessment technique to discriminate between menorrhagia and normal menstrual blood loss. Obstet Gynecol 1995; 85: 977-82.
25. Zakherah MS, Sayed GH, El-Nashar SA, Shaaban MM. Pictorial blood loss assessment chart in the evaluation of heavy menstrual bleeding: diagnostic accuracy compared to alkaline hematin. Gynecol Obstet Invest 2011; 71: 281-4.
26. Sanchez J, Andrabi S, Bercaw JL, Dietrich JE. Quantifying the PBAC in a pediatric and adolescent gynecology population. Pediatr Hematol Oncol 2012; 29: 479-84.
27. Philipp CS, Faiz A, Dowling NF et al. Development of a screening tool for identifying women with menorrhagia for hemostatic evaluation. Am J Obstet Gynecol 2008; 198(163): e1-8.
28. Tosetto A, Rodeghiero F, Castaman G et al. A comparison between two semi-quantitative bleeding scales for the diagnosis and assessment of bleeding severity in type 1 von Willebrand disease. Haemophilia 2011; 17: 165-6.
29. Elbatarny M, Mollah S, Grabell J et al. Normal range of bleeding scores for the ISTH-BAT: adult and pediatric data from the merging project. Haemophilia 2014; 20: 831-5.
30. Bidlingmaier C, Grote V, Budde U, Olivieri M, Kurnik K. Prospective evaluation of a pediatric bleeding questionnaire and the ISTH bleeding assessment tool in children and parents in routine clinical practice. J Thromb Haemost 2012; 10: 1335-41.
31. Wang W, Bourgeois T, Klima J, Berlan ED, Fischer AN, O'Brien SH. Iron deficiency and fatigue in adolescent females with heavy menstrual bleeding. Haemophilia 2013; 19: 225-30.
32. Varni JW, Burwinkle TM, Seid M. The PedsQL as a pediatric patient-reported outcome: reliability and validity of the PedsQL Measurement Model in 25, 000 children. Expert Rev Pharmacoecon Outcomes Res 2005; 5: 705-19.
33. 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: 800-12.
34. Philipp CS, Dilley A, Miller CH et al. Platelet functional defects in women with unexplained menorrhagia. J Thromb Haemost 2003; 1: 477-84.
35. Diaz R, Dietrich JE, Mahoney D Jr, Yee DL, Srivaths LV. Hemostatic abnormalities in young females with heavy menstrual bleeding. J Pediatr Adolesc Gynecol 2014; 27: 324-9.
36. Vo KT, Grooms L, Klima J, Holland-Hall C, O'Brien SH. Menstrual bleeding patterns and prevalence of bleeding disorders in a multidisciplinary adolescent haematology clinic. Haemophilia 2013; 19: 71-5.
37. Alperin JB. Estrogens and surgery in women with von Willebrand's disease. Am J Med 1982; 73: 367-71.
38. Onundarson PT, Gudmundsdottir BR, Arnfinnsdottir AV, Kjeld M, Olafsson O. Von Willebrand factor does not vary during normal menstrual cycle. Thromb Haemost 2001; 85: 183-4.
39. Laffan M, O'Connell NM, Perry DJ, Hodgson AJ, O'Shaughnessy D, Smith OP. Analysis and results of the recombinant factor VIIa extended-use registry. Blood Coagul Fibrinolysis 2003; 14(Suppl 1): S35-8.
40. Pasi KJ, Collins PW, Keeling DM et al. Management of von Willebrand disease: a guideline from the UK Haemophilia Centre Doctors' Organization. Haemophilia 2004; 10: 218-31.
41. Bolton-Maggs PH, Perry DJ, Chalmers EA et al. The rare coagulation disorders-review with guidelines for management from the United Kingdom Haemophilia Centre Doctors' Organisation. Haemophilia 2004; 10: 593-628.
42. Nichols WL, Hultin MB, James AH et al. von Willebrand disease (VWD): evidence-based diagnosis and management guidelines, the National Heart, Lung, and Blood Institute (NHLBI) Expert Panel report (USA). Haemophilia 2008; 14: 171-232.
43. Bayer LL, Hillard PJ. Use of levonorgestrel intrauterine system for medical indications in adolescents. J Adolesc Health 2013; 52: S54-8.
44. DeVore GR, Owens O, Kase N. Use of intravenous Premarin in the treatment of dysfunctional uterine bleeding-a double-blind randomized control study. Obstet Gynecol 1982; 59: 285-91.
45. Munro MG, Mainor N, Basu R, Brisinger M, Barreda L. Oral medroxyprogesterone acetate and combination oral contraceptives for acute uterine bleeding: a randomized controlled trial. Obstet Gynecol 2006; 108: 924-9.
46. Halterman JS, Kaczorowski JM, Aligne CA, Auinger P, Szilagyi PG. Iron deficiency and cognitive achievement among school-aged children and adolescents in the United States. Pediatrics 2001; 107: 1381-6.
47. Kouides PA. Females with von Willebrand disease: 72 years as the silent majority. Haemophilia 1998; 4: 665-76.