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Year 2020, , 194 - 205, 25.12.2020
https://doi.org/10.33457/ijhsrp.738665

Abstract

Supporting Institution

Gazi Üniversitesi Tıp Fakültesi

Thanks

Emekleri için Prof Dr Türkiz Gürsel e teşekkürler...

References

  • References [1]. Coppola, A., et al., Prophylaxis in children with hemophilia: evidence based achievements, old and new challenges. Semin Thromb Hemost. 38,79-94, 2012.
  • [2]. Schrijvers, L.H., Schuurmans, M.J., Fischer, K. Promoting self-management and adherence during prophylaxis: evidence-based recommendations for haemophilia professionals. Haemophilia. 22,499-506, 2016.
  • [3].Garcia-Dasi, M., et al., Adherence to prophylaxis and quality of life in children and adolescents with severe hemophilia A. Haemophilia. 21,458-464, 2015.
  • [4].Krishnan, S., et al., Adherence to prophylaxis is associated with better outcomes in moderate and severe hemophilia: results of a patient survey. Haemophilia. 21,64-70, 2015.
  • [5].Lock, J., et al., Adherence to treatment in a Western European paediatric population with hemophilia:reliability and validity of the VERITAS-Pro scale. Haemophilia. 20,616-623, 2014.
  • [6]. Megias-Vericat, J.E., et al., Bayesian pharmacokinetic guided prophylaxis with recombinant factor VIII in severe or moderate hemophilia A. Thromb Res. 174,151-162, 2019.
  • [7].Nagao, A., et al., Clinical outcome in hemophilia A patients undergoing tailoring of prophylaxis based on population based pharmacokinetic dosing. Thromb Res. 173,79-84, 2019.
  • [8].Pasca, S., Milan, M., Sarolo, L., Zanon, E. PK driven prophylaxis versus standard prophylaxis: When a tailored treatment may be a real and achievable cost saving approach in children with severe hemophilia A. Thromb Res. 157,58-63, 2017.
  • [9].von der Lippe, C., et al. Treatment of hemophilia: A qualitative study of mothers’ perspectives. Pediatr Blood Cancer. 64,121-127, 2017.
  • [10].Bullinger, M., et al., Challenges of patient-reported outcome assessment in hemophilia care-a state of the art review. Value Health. 12,808-820, 2009.
  • [11].Varaklioti, A., et al., Health-related quality of life and association with arthropathy in Greek patients with hemophilia. Clin Appl Thromb Hemost. 24,815-821, 2018.
  • [12].Mercan, A., et al., Hemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-A-QoL questionnaires) of children and adults: result of a single center from Turkey. Pediatr Hematol Oncol. 27,449-461,2010.
  • [13].Abali, O., et al., An examination of the symptoms of anxiety and parental attitude in children with hemophilia. Turk J Med Sci. 44,1087-1090, 2014.
  • [14].Evans, M., Cottrell, D., Shiach, C. Emotional and behavioural problems and family functioning in children with haemophilia: a cross sectional survey. Haemophilia. 6,682-687, 2000.
  • [15].Pinto, P.R., et al., Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults. Haemophilia. 24,e344-e353, 2018.
  • [16].Ware, J.E., Jr, Sherbourne, C.D. The MOS 36-item short-form health survey (SF 36). I. Conceptual framework and item selection. Med Care. 30:473-483, 1992.
  • [17].Julian, L.J., Measures of anxiety. State-Trait Anxiety Inventory (STAI), Beck Anxiety Inventory (BAI), and Hospital Anxiety and Depression Scale-Anxiety (HADS-A). Arthritis Care Res. 63,S467-472, 2011.
  • [18].Schrijvers, L.H., et al., Unraveling adherence to prophylaxis in haemophilia: a patients’ perspective. Haemophilia 21,612-621, 2015.
  • [19].Kaya, Z., et al., Succesful total hip replacement with sequential administration of bypassing agents in an adolescent boy with hemophilia A and high titer inhibitors. Blood Coag Fibrinolysis 28,419-422, 2017.
  • [20].Lehmeier, A., et al., Participation in physical and sportive activities among adult Turkish people with hemophilia A: A single center experience. Turk J Haematol. 35,81-82, 2018. [21].Hanley, J., et al., Guidelines for the management of acute joint bleeds and chronic synovitis in haemophilia. Haemophilia 23,511-520, 2017.
  • [22]. Geerts, E., van de Wiel, H., Tamminga, R. A pilot study on the effects of the transition of pediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health related quality of life. Haemophilia. 14,1007-1013, 2008.
  • [23].Ugur, MC., Kavakli, K. Prospective evaluation of non-compliant severe haemophilia. patients. Turk J Hematol. 36,137-138, 2019.
  • [24].Mannucci, P.M., et al., How I treat age-related morbitidies in elderly persons with hemophilia. Blood. 114:5256-5263, 2009.
  • [25].Gringeri, A., von Mackensen, S. Quality of life in haemophilia. Haemophilia. 14 Suppl 3:19-25, 2008.
  • [26].Lins, L., Carvalho, F.M. SF-36 total score as a single measure of health related quality of life: Scoping review. SAGE Open Med. 4: 2050312116671725, 2016.

ADHERENCE TO PROPHYLAXIS IN RELATION TO QUALITY OF LIFE AND ANXIETY LEVEL IN TURKISH PATIENTS WITH SEVERE HAEMOPHILIA A

Year 2020, , 194 - 205, 25.12.2020
https://doi.org/10.33457/ijhsrp.738665

Abstract

Background: Bleeding increases anxiety and reduces quality of life (QoL) for patients with severe haemophilia A. This study investigated adherence to prophylaxis in relation to QoL and anxiety level in haemophilia A patients.
Methods: Forty-three patients with severe haemophilia A were stratified into three groups by age: 12 children aged 2-13 years, 17 adolescents aged 14-21 years, and 14 adults aged 21-65 years. Quality of life and anxiety level were assessed using the 36-item Short Form Health Survey (SF-36) and the State-Trait Anxiety Inventory (STAI), respectively. Regular prophylaxis (RP) and pharmacokinetic (PK)-guided prophylaxis were prescribed for 30 and 13 patients, respectively.
Results: All the children (n=12; nine RP, three PK-guided prophylaxis) and 10 (58.8%, PK-guided prophylaxis) of the adolescents were completely adherent to prophylaxis. Seven (41.2%) of the adolescents and all 14 adults (100%) were non-adherent to prophylaxis. Compared to findings for the adolescents, anxiety level was higher among the children’s parents and among the adults (p<0.05 for both). The QoL level was lower for the adults than for the parents of children and for the adolescents (p<0.05 for both).
Conclusion: Pharmacokinetic-guided prophylaxis for adults and home treatment for children in haemophilia A would enhance adherence to prophylaxis, increase QoL and reduce anxiety levels.

References

  • References [1]. Coppola, A., et al., Prophylaxis in children with hemophilia: evidence based achievements, old and new challenges. Semin Thromb Hemost. 38,79-94, 2012.
  • [2]. Schrijvers, L.H., Schuurmans, M.J., Fischer, K. Promoting self-management and adherence during prophylaxis: evidence-based recommendations for haemophilia professionals. Haemophilia. 22,499-506, 2016.
  • [3].Garcia-Dasi, M., et al., Adherence to prophylaxis and quality of life in children and adolescents with severe hemophilia A. Haemophilia. 21,458-464, 2015.
  • [4].Krishnan, S., et al., Adherence to prophylaxis is associated with better outcomes in moderate and severe hemophilia: results of a patient survey. Haemophilia. 21,64-70, 2015.
  • [5].Lock, J., et al., Adherence to treatment in a Western European paediatric population with hemophilia:reliability and validity of the VERITAS-Pro scale. Haemophilia. 20,616-623, 2014.
  • [6]. Megias-Vericat, J.E., et al., Bayesian pharmacokinetic guided prophylaxis with recombinant factor VIII in severe or moderate hemophilia A. Thromb Res. 174,151-162, 2019.
  • [7].Nagao, A., et al., Clinical outcome in hemophilia A patients undergoing tailoring of prophylaxis based on population based pharmacokinetic dosing. Thromb Res. 173,79-84, 2019.
  • [8].Pasca, S., Milan, M., Sarolo, L., Zanon, E. PK driven prophylaxis versus standard prophylaxis: When a tailored treatment may be a real and achievable cost saving approach in children with severe hemophilia A. Thromb Res. 157,58-63, 2017.
  • [9].von der Lippe, C., et al. Treatment of hemophilia: A qualitative study of mothers’ perspectives. Pediatr Blood Cancer. 64,121-127, 2017.
  • [10].Bullinger, M., et al., Challenges of patient-reported outcome assessment in hemophilia care-a state of the art review. Value Health. 12,808-820, 2009.
  • [11].Varaklioti, A., et al., Health-related quality of life and association with arthropathy in Greek patients with hemophilia. Clin Appl Thromb Hemost. 24,815-821, 2018.
  • [12].Mercan, A., et al., Hemophilia-Specific Quality of Life Index (Haemo-QoL and Haem-A-QoL questionnaires) of children and adults: result of a single center from Turkey. Pediatr Hematol Oncol. 27,449-461,2010.
  • [13].Abali, O., et al., An examination of the symptoms of anxiety and parental attitude in children with hemophilia. Turk J Med Sci. 44,1087-1090, 2014.
  • [14].Evans, M., Cottrell, D., Shiach, C. Emotional and behavioural problems and family functioning in children with haemophilia: a cross sectional survey. Haemophilia. 6,682-687, 2000.
  • [15].Pinto, P.R., et al., Emotional distress in haemophilia: Factors associated with the presence of anxiety and depression symptoms among adults. Haemophilia. 24,e344-e353, 2018.
  • [16].Ware, J.E., Jr, Sherbourne, C.D. The MOS 36-item short-form health survey (SF 36). I. Conceptual framework and item selection. Med Care. 30:473-483, 1992.
  • [17].Julian, L.J., Measures of anxiety. State-Trait Anxiety Inventory (STAI), Beck Anxiety Inventory (BAI), and Hospital Anxiety and Depression Scale-Anxiety (HADS-A). Arthritis Care Res. 63,S467-472, 2011.
  • [18].Schrijvers, L.H., et al., Unraveling adherence to prophylaxis in haemophilia: a patients’ perspective. Haemophilia 21,612-621, 2015.
  • [19].Kaya, Z., et al., Succesful total hip replacement with sequential administration of bypassing agents in an adolescent boy with hemophilia A and high titer inhibitors. Blood Coag Fibrinolysis 28,419-422, 2017.
  • [20].Lehmeier, A., et al., Participation in physical and sportive activities among adult Turkish people with hemophilia A: A single center experience. Turk J Haematol. 35,81-82, 2018. [21].Hanley, J., et al., Guidelines for the management of acute joint bleeds and chronic synovitis in haemophilia. Haemophilia 23,511-520, 2017.
  • [22]. Geerts, E., van de Wiel, H., Tamminga, R. A pilot study on the effects of the transition of pediatric to adult health care in patients with haemophilia and in their parents: patient and parent worries, parental illness-related distress and health related quality of life. Haemophilia. 14,1007-1013, 2008.
  • [23].Ugur, MC., Kavakli, K. Prospective evaluation of non-compliant severe haemophilia. patients. Turk J Hematol. 36,137-138, 2019.
  • [24].Mannucci, P.M., et al., How I treat age-related morbitidies in elderly persons with hemophilia. Blood. 114:5256-5263, 2009.
  • [25].Gringeri, A., von Mackensen, S. Quality of life in haemophilia. Haemophilia. 14 Suppl 3:19-25, 2008.
  • [26].Lins, L., Carvalho, F.M. SF-36 total score as a single measure of health related quality of life: Scoping review. SAGE Open Med. 4: 2050312116671725, 2016.
There are 25 citations in total.

Details

Primary Language English
Subjects Health Care Administration
Journal Section Article
Authors

Zühre Kaya 0000-0002-3798-7246

Serap Kirkiz 0000-0002-3885-5325

Meryem Albayrak 0000-0003-2711-5150

Esra Güney 0000-0002-4043-8301

Selin Aytac This is me 0000-0003-2192-298X

Namık Yaşar Özbek 0000-0001-6857-0681

Publication Date December 25, 2020
Submission Date May 20, 2020
Acceptance Date November 3, 2020
Published in Issue Year 2020

Cite

IEEE Z. Kaya, S. Kirkiz, M. Albayrak, E. Güney, S. Aytac, and N. Y. Özbek, “ADHERENCE TO PROPHYLAXIS IN RELATION TO QUALITY OF LIFE AND ANXIETY LEVEL IN TURKISH PATIENTS WITH SEVERE HAEMOPHILIA A”, IJHSRP, vol. 5, no. 3, pp. 194–205, 2020, doi: 10.33457/ijhsrp.738665.

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