A pilot randomized control trial to evaluate the feasibility of an Internet-based self-management and transitional care program for youth with haemophilia

Haemophilia

Volumn 20, Issue 6, 2014, Pages 784-793

  Breakey, Vicky R ^a,b   Ignas, D M ^c   Warias, A V ^b   White, M ^c   Blanchette, V S ^c   Stinson, J N ^c,d  

^a MCMASTER CHILDREN S HOSPITAL   (Canada)

^b MCMASTER UNIVERSITY   (Canada)

^c HOSPITAL FOR SICK CHILDREN   (Canada)

^d UNIVERSITY OF TORONTO   (Canada)

Author keywords

Adolescents; Education; Haemophilia; Internet; Self management; Transition

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CLINICAL ARTICLE; CLINICAL PROTOCOL; CONTROLLED STUDY; FEMALE; HEALTH BEHAVIOR; HEMOPHILIA; HUMAN; INTERNET; JUVENILE; MALE; ONLINE SYSTEM; OUTCOME ASSESSMENT; PATIENT COMPLIANCE; PATIENT SATISFACTION; PILOT STUDY; PRIORITY JOURNAL; RANDOMIZED CONTROLLED TRIAL; RESPONSIBILITY; SELF CARE; TELEPHONE; TRANSITION TO ADULT CARE; AGE; ATTITUDE TO HEALTH; CLINICAL TRIAL; EDUCATION; HEMOPHILIA A; HEMOPHILIA B; QUESTIONNAIRE;

ADOLESCENT; AGE FACTORS; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEMOPHILIA A; HEMOPHILIA B; HUMANS; INTERNET; MALE; OUTCOME ASSESSMENT (HEALTH CARE); PILOT PROJECTS; QUESTIONNAIRES; SELF CARE; SELF-EVALUATION PROGRAMS;

EID: 84932089262     PISSN: 13518216     EISSN: 13652516     Source Type: Journal    
DOI: 10.1111/hae.12488     Document Type: Article

References (39)

1. Breakey VR, Blanchette VS, Bolton-Maggs PHB. Towards comprehensive care in transition for young people with haemophilia. Haemophilia 2010; 16: 848-57.
2. Ljung R. Hemophilia and prophylaxis. Pediatr Blood Cancer 2013; 60 (suppl. 1): 23-6.
3. Schrijvers LH, Uitslager N, Schuurmans MJ, Fischer K. Barriers and motivators of adherence to prophylactic treatment in haemophilia: a systematic review. Haemophilia 2013; 19: 355-61.
4. Lane s, Arnold E, Webert KE, Chan A, Walker I, Heddle NM. What should men living with severe haemophilia need to know? The perspectives of Canadian hae-mophilia health care providers Haemophilia 2013; 19: 503-10.
5. Adams K, Greiner AC, Corrigan JM (Eds). The 1st Annual Crossing the Quality Quasm Summit-A Focus on Communities. Washington, DC: National Academies Press, 2004: 57.
6. Geck C. The generation Z connection: teaching information literacy to the newest net generation. Teacher Librarian 2006; 33: 19-23.
7. Jerant AF, von Friederichs-Fitzwater MM, Moore M. Patients' perceived barriers to active self-management of chronic conditions. Patient Educ Couns 2005; 57: 300-7.
8. George M, Rand-Giovannetti D, Eakin MN, Borrelli B, Zettler M, Riekert KA. Perceptions of barriers and facilitators: selfmanagement decisions by older adolescents and adults with CF. J Cyst Fibros 2010; 9: 425-32.
9. Stinson J, Wilson R, Gill N, Yamada J, Holt J. A Systematic Review of Internetbased Self Management Interventions for Youth with Health Conditions. J Pediatr Psychol 2009; 34: 495-510.
10. Medical Research Council. A framework for development and evaluation of RCTs for complex interventions to improve health. London: Medical Research Council, 2000.
11. Kaufman DR, Patel VL, Hilliman C et al. Usability in the real world: assessing medical information technologies in patients' homes. J Biomed Inform 2003; 36: 45-60.
12. Cook AD, Dupras MD. A practical guide to developing effective web-based learning. J Gen Intern Med 2004; 19: 698-707.
13. Kushniruk AW, Patel VL. Cognitive and usability engineering methods for the evaluation of clinical information systems. J Biomed Inform 2004; 37: 56-76.
14. Mulvaney SA, Rothman RL, Wallston KA, Lybarger C, Dietrich MS. An internet-based program to improve self-management in adolescents with type 1 diabetes. Diabetes Care 2010; 33: 602-4.
15. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new medical research council guidance. BMJ 2008; 337: 979-83.
16. Cushing CC, Steele RG. A meta-analytic review of eHealth interventions for pediatric health promoting and maintaining behaviors. J Pediatr Psychol 2010; 35: 937-49.
17. Campbell M, Fitzpatrick R, Haines A et al. Framework for design and evaluation of complex interventions to improve health. Br Med J 2000; 321: 964-6.
18. Fry JP, Neff R. Period prompts and reminders in health promotion and health behavior interventions: systematic review. J Med Internet Res 2009; 11: e16.
19. Law EF, Murphy LK, Palermo TM. Evaluating treatment participation in an internetbased behavioral intervention for pediatric chronic pain. J Pediatr Psychol 2012; 37: 893-903.
20. Mulders G, De Wee EM. Vahedi Nikbakht-Van De Sande MCVM, Kruip MJHA, Elfrink EJ, Leebeek FWG. E-learning improves knowledge and practical skills in haemophilia patients on home treatment: a randomized controlled trial. Haemophilia 2012; 18: 693-8.
21. Sterling LE, Nyhof-Young J, Blanchette VS, Breakey VR. Growing up with hemophilia: assessing teens' experiences and needs during transition to adult health care. Univ. Toronto Med J 2012; 90: 146-51.
22. Sterling L, Nyhof-Young J, Blanchette VS, Breakey VR. Exploring internet needs and use among adolescents with haemophilia: a website development project. Haemophilia 2012; 18: 216-21.
23. Breakey VR, Warias AV, Ignas DM, White M, Blanchette VS, Stinson JN. The value of usability testing for Internet-based adolescent self-management interventions: "Managing Hemophilia Online". BMC Medical Informatics and Decision Making 2013; 13: 113-6.
24. Stinson J, McGrath P, Hodnett E et al. An Internet-based Self-management Program with Telephone Support for Adolescents with Juvenile Idiopathic Arthritis (JIA): a Pilot Randomized Controlled Trial. J Rheumatol 2010; 37: 1944-52.
25. Young NL, Bradley CS, Wakefield CD, Barnard D, Blanchette VS, McCusker PJ. How well does the Canadian Hemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with hemophilia? Pediatr Blood Cancer 2006; 47: 305-11.
26. Sherer M, Maddux JE, Mercandante B, Prentice-Dunn S, Jacobs B, Rodgers R. The self-efficacy scale: construction and validation. Psychol Rep 1982; 51: 663-71.
27. Bosscher RJ, Smit JH. Confirmatory factor analysis of the General Self-Efficacy Scale. Behav Res Ther 1998; 36: 339-43.
28. Williams TS, Sherman EMS, Dunseith C et al. Measurement of medical self-management and transition readiness among Canadian adolescents with special health care needs. International Journal of Child and Adolescent Health 2011; 3: 527-35.
29. Hertzog MA. Considerations in determining sample size for pilot studies. Res Nurs Health 2008; 31: 180-91.
30. SAS Version 9.1.3. Cary, NC: SAS Institute, 2006.
31. Frison L, Pocock S. Repeated measures in clinical trials: analysis using mean summary statistics and its implications for design. Stat Med 1993; 11: 1685-704.
32. Nguyen HQ, Carrieri-Kohlman V, Rankin SH, Slaughter R, Stulbarg MS. Internetbased patient education and support interventions: a review of evaluation studies and directions for future research. Comput Biol Med 2004; 34: 95-114.
33. Palmqvist B, Carlbring P, Andersson G. Internet-delivered treatments with or without therapist input: does the therapist factor have implications for efficacy and cost? Expert Rev Pharmacoecon Outcomes Res 2007; 7: 291-7.
34. White M, Stinson JN, Lingley-Pottie P, McGrath PJ, Gill N, Vijenthira A. Exploring therapeutic alliance with an internetbased self-management program with brief telephone support for youth with arthritis: a pilot study. Telemed J E Health 2012; 18: 271-6.
35. Brownson CA, Heisler M. The role of peer support in diabetes care and self-management. Patient 2009; 2: 5-17.
36. Mitchell Funnell M. Peer-based behavioural strategies to improve chronic disease selfmanagement and clinical outcomes: evidence, logistics, evaluation considerations and needs for future research. Fam Pract 2010; 27(Suppl. 1): i17-22.
37. Andre M, Hedengren E, Hagelberg S, Stenstrom CH. Perceived ability to manage juvenile chronic arthritis among adolescents and parents: development of a questionnaire to assess medical issues exercise, pain, and social support. Arthritis Care Res 1999; 12: 229-37.
38. Fitzclarence CAB, Henry RL. Validation of an asthma knowledge questionnaire. J Paediatr Child Health 1990; 26: 200-4.
39. Golshiri P, Yarmohammadi P, Sarrafzadegan N, Shahrokhi S, Yazadani M, Pourmoghaddas M. Developing and validating questionnaires to assess knowledge, attitude, and performance toward obesity among Iranian adults and adolescents: TABASSOM study. ARYA Atheroscler 2012; 7: S119-24.