Haemophilia (2014), 20, e260–e266
DOI: 10.1111/hae.12431
ORIGINAL ARTICLE Clinical haemophilia
Impact of health instructions on improving knowledge and practices of haemophilia A adolescents: a single centre experience A . M . E L D A K H A K H N Y , * M . A . H E S H A M , † T . H . H A S S A N , † S . E L A W A D Y * and M . M . H A N F Y * *Department of Pediatric Nursing, Faculty of Nursing Zagazig University, Zagazig, Egypt; and †Department of Pediatrics, Faculty of Medicine Zagazig University, Zagazig, Egypt
Summary. Introduction. Nowadays, health education has been elevated to a higher standing in healthcare systems in managing chronic illness; yet, this approach has not received sufficient support in developing countries as these societies still tend to the traditional stage of ‘treatment after disease’. Adolescence is a critical period and voyage into adulthood can be more challenging for haemophilia teens. For teens with haemophilia, learning to care for their own disorder is a giant step forward in asserting their independence and preparation for adult life. Aim. We aimed to determine impact of health instructions on improving knowledge and practices of haemophilia A adolescents. Methods. An interventional study was conducted on 50 haemophilia A adolescents at outpatient clinic of Pediatric Hematology Unit of Zagazig University Hospitals. Three tools were used. The first was a structured interview sheet to evaluate patients’
knowledge. The second was a clinical checklist to evaluate patients’ practices. The third was health instructions program. Tools were developed by the researchers based on a thorough review of related literature and a full understanding of the needs of haemophilic adolescents. Evaluation of health instructions success was based on comparing scores of tool I and tool II before health instructions (pretest) and after health instructions immediately (posttest) and after 2 months (follow-up test). Results. There was a significant improvement in knowledge and practices of haemophilia A adolescents in posttest and follow-up test compared to pretest. Conclusion. Health instructions have an impact on improving knowledge and practices of haemophilia A adolescents.
Introduction
of people with haemophilia remain undiagnosed and untreated, mostly in the developing countries [2]. Patients with haemophilia A have mild, moderate or severe bleeding tendencies; in most, the severity of the illness parallels to the activity of factor VIII in the blood. Half of patients have virtually no factor VIII activity and often suffer spontaneous bleeding. A third of patients, in whom the factor VIII activity level is 1–5%, bleed spontaneously only occasionally but often do so after minor trauma. One fifth has factor activity levels greater than 5–40% and bleeding only after significant trauma or surgery [3]. As adolescents with haemophilia begin to take over responsibility for their disease and treatment, both the teen and the teen’s family face many challenges. In addition to the usual demands of adolescence, these teens must learn to cope with the impact of haemophilia on their lives and develop the skills necessary to manage their condition [4].
Haemophilia is an inherited X-linked coagulation disorder caused by deficiencies of the clotting factor VIII (FVIII: haemophilia A) or of factor IX (FIX: haemophilia B). Haemophilia A and B are the most frequent clinically severe inherited bleeding disorders [1]. The World Federation of Hemophilia (WFH) estimates the prevalence of haemophilia A worldwide is 105 per million males, and the prevalence of haemophilia B is 28 per million males. However, based on data collected in the last 2 years, approximately 70%
Correspondence: Tamer Hasan Hassan, Pediatrics department, Zagazig University, Zagazig 44111, Egypt. Tel.: 0020552384600; fax: 0020552363506; e-mail: [email protected] Accepted after revision 10 March 2014
e260
Keywords: adolescents, health, haemophilia, instructions, knowledge, practices
© 2014 John Wiley & Sons Ltd
HEALTH INSTRUCTIONS IN HAEMOPHILIA A ADOLESCENTS
e261
Adolescents with haemophilia have heightened educational needs as they become more independent and transition from paediatric to adult care. Important transition supports include: (i) providing effective patient education, and (ii) supporting the development of self-management skills [5]. The pressure of large number of patients particularly in developing countries often makes it difficult for physician to spare adequate time to give adequate information about this disorder [6] So, it is necessary for haemophilic patients and their family members to be well educated about the disease and its management, which can significantly reduce the morbidity and mortality [7]. It is believed that regular exercise and rehabilitation with physiotherapy is fundamental among haemophilic patients, particularly in countries where replacement therapy is not readily available [8]. The aim of this study was to determine the impact of health instructions on improving knowledge and practices of haemophilia A adolescents.
factor VIII level and other laboratory investigations, treatment regimen, home care, sports and therapeutic exercises. Part 2 (adolescents’ knowledge about haemophilia) – it included 14 questions in three domains:
Materials and methods
1. K4 (64 marks): It included 19 questions to test knowledge about manifestations of haemophilia, sites that considered life-threatening, manifestations of genitourinary system bleeding and bleeding from mucus membrane, muscles and joints. 2. K5 (38 marks): It included 13 questions to test knowledge about treatment and home care of haemophilia. 3. K6 (43 marks): It included 12 questions to test knowledge about prevention of bleeding.
Technical design Research design—Interventional study (before and after comparison). Setting—The study was conducted at Pediatric Hematology outpatient clinic of Zagazig University Hospitals. Subjects—The study included all haemophilia A patients who attended the Pediatric Hematology outpatient clinic of Zagazig University Hospitals during a period of 6 months (March to August 2011) and who satisfied the following inclusion criteria: 1. Age: from 12 to 18 years. 2. Free from any other chronic diseases. According to factor VIII levels; 14 patients had severe haemophilia, 23 had moderate haemophilia and 13 had mild haemophilia.
Tools Tool I: Structured interview sheet: A structured interview sheet was developed by the researchers to collect the required data. Interview was performed between the researchers and each participant separately. Sheet consisted of four main parts. Apart from Part 1 which included questions patient asked to fill them, questions were MCQs. Part 1 (characteristics of the subjects) – It included 40 questions about adolescents’ characteristics, parents’ characteristics, medical history, family history, © 2014 John Wiley & Sons Ltd
1. K1 (8 marks): It included four questions to test knowledge about blood components, functions of plasma, definition and defect of clotting process in haemophilia. 2. K2 (9 marks): It included five questions to test knowledge about definition, types, causes, method used to assess severity of haemophilia and levels of factor VIII in haemophilia and its relation to bleeding. 3. K3 (11 marks): It included five questions to test knowledge about the inheritance of haemophilia and importance of premarital examination and tests. Part 3 (adolescents’ knowledge about manifestations of haemophilia, prevention and control of bleeding) – it included 44 questions in three domains:
Part 4 (adolescents’ knowledge about treatment complications and allergic reaction to factor VIII and blood products) – it included seven questions in one domain: 1. K7 (18marks): It included seven questions to test knowledge about treatment complications and allergic reaction to factor VIII and blood product. Structured interview sheet scoring system – The correct answer was scored one and the incorrect one was scored zero. For each part, scores of items were divided according to the median into satisfactory if ≥50% and unsatisfactory if
DOI: 10.1111/hae.12431
ORIGINAL ARTICLE Clinical haemophilia
Impact of health instructions on improving knowledge and practices of haemophilia A adolescents: a single centre experience A . M . E L D A K H A K H N Y , * M . A . H E S H A M , † T . H . H A S S A N , † S . E L A W A D Y * and M . M . H A N F Y * *Department of Pediatric Nursing, Faculty of Nursing Zagazig University, Zagazig, Egypt; and †Department of Pediatrics, Faculty of Medicine Zagazig University, Zagazig, Egypt
Summary. Introduction. Nowadays, health education has been elevated to a higher standing in healthcare systems in managing chronic illness; yet, this approach has not received sufficient support in developing countries as these societies still tend to the traditional stage of ‘treatment after disease’. Adolescence is a critical period and voyage into adulthood can be more challenging for haemophilia teens. For teens with haemophilia, learning to care for their own disorder is a giant step forward in asserting their independence and preparation for adult life. Aim. We aimed to determine impact of health instructions on improving knowledge and practices of haemophilia A adolescents. Methods. An interventional study was conducted on 50 haemophilia A adolescents at outpatient clinic of Pediatric Hematology Unit of Zagazig University Hospitals. Three tools were used. The first was a structured interview sheet to evaluate patients’
knowledge. The second was a clinical checklist to evaluate patients’ practices. The third was health instructions program. Tools were developed by the researchers based on a thorough review of related literature and a full understanding of the needs of haemophilic adolescents. Evaluation of health instructions success was based on comparing scores of tool I and tool II before health instructions (pretest) and after health instructions immediately (posttest) and after 2 months (follow-up test). Results. There was a significant improvement in knowledge and practices of haemophilia A adolescents in posttest and follow-up test compared to pretest. Conclusion. Health instructions have an impact on improving knowledge and practices of haemophilia A adolescents.
Introduction
of people with haemophilia remain undiagnosed and untreated, mostly in the developing countries [2]. Patients with haemophilia A have mild, moderate or severe bleeding tendencies; in most, the severity of the illness parallels to the activity of factor VIII in the blood. Half of patients have virtually no factor VIII activity and often suffer spontaneous bleeding. A third of patients, in whom the factor VIII activity level is 1–5%, bleed spontaneously only occasionally but often do so after minor trauma. One fifth has factor activity levels greater than 5–40% and bleeding only after significant trauma or surgery [3]. As adolescents with haemophilia begin to take over responsibility for their disease and treatment, both the teen and the teen’s family face many challenges. In addition to the usual demands of adolescence, these teens must learn to cope with the impact of haemophilia on their lives and develop the skills necessary to manage their condition [4].
Haemophilia is an inherited X-linked coagulation disorder caused by deficiencies of the clotting factor VIII (FVIII: haemophilia A) or of factor IX (FIX: haemophilia B). Haemophilia A and B are the most frequent clinically severe inherited bleeding disorders [1]. The World Federation of Hemophilia (WFH) estimates the prevalence of haemophilia A worldwide is 105 per million males, and the prevalence of haemophilia B is 28 per million males. However, based on data collected in the last 2 years, approximately 70%
Correspondence: Tamer Hasan Hassan, Pediatrics department, Zagazig University, Zagazig 44111, Egypt. Tel.: 0020552384600; fax: 0020552363506; e-mail: [email protected] Accepted after revision 10 March 2014
e260
Keywords: adolescents, health, haemophilia, instructions, knowledge, practices
© 2014 John Wiley & Sons Ltd
HEALTH INSTRUCTIONS IN HAEMOPHILIA A ADOLESCENTS
e261
Adolescents with haemophilia have heightened educational needs as they become more independent and transition from paediatric to adult care. Important transition supports include: (i) providing effective patient education, and (ii) supporting the development of self-management skills [5]. The pressure of large number of patients particularly in developing countries often makes it difficult for physician to spare adequate time to give adequate information about this disorder [6] So, it is necessary for haemophilic patients and their family members to be well educated about the disease and its management, which can significantly reduce the morbidity and mortality [7]. It is believed that regular exercise and rehabilitation with physiotherapy is fundamental among haemophilic patients, particularly in countries where replacement therapy is not readily available [8]. The aim of this study was to determine the impact of health instructions on improving knowledge and practices of haemophilia A adolescents.
factor VIII level and other laboratory investigations, treatment regimen, home care, sports and therapeutic exercises. Part 2 (adolescents’ knowledge about haemophilia) – it included 14 questions in three domains:
Materials and methods
1. K4 (64 marks): It included 19 questions to test knowledge about manifestations of haemophilia, sites that considered life-threatening, manifestations of genitourinary system bleeding and bleeding from mucus membrane, muscles and joints. 2. K5 (38 marks): It included 13 questions to test knowledge about treatment and home care of haemophilia. 3. K6 (43 marks): It included 12 questions to test knowledge about prevention of bleeding.
Technical design Research design—Interventional study (before and after comparison). Setting—The study was conducted at Pediatric Hematology outpatient clinic of Zagazig University Hospitals. Subjects—The study included all haemophilia A patients who attended the Pediatric Hematology outpatient clinic of Zagazig University Hospitals during a period of 6 months (March to August 2011) and who satisfied the following inclusion criteria: 1. Age: from 12 to 18 years. 2. Free from any other chronic diseases. According to factor VIII levels; 14 patients had severe haemophilia, 23 had moderate haemophilia and 13 had mild haemophilia.
Tools Tool I: Structured interview sheet: A structured interview sheet was developed by the researchers to collect the required data. Interview was performed between the researchers and each participant separately. Sheet consisted of four main parts. Apart from Part 1 which included questions patient asked to fill them, questions were MCQs. Part 1 (characteristics of the subjects) – It included 40 questions about adolescents’ characteristics, parents’ characteristics, medical history, family history, © 2014 John Wiley & Sons Ltd
1. K1 (8 marks): It included four questions to test knowledge about blood components, functions of plasma, definition and defect of clotting process in haemophilia. 2. K2 (9 marks): It included five questions to test knowledge about definition, types, causes, method used to assess severity of haemophilia and levels of factor VIII in haemophilia and its relation to bleeding. 3. K3 (11 marks): It included five questions to test knowledge about the inheritance of haemophilia and importance of premarital examination and tests. Part 3 (adolescents’ knowledge about manifestations of haemophilia, prevention and control of bleeding) – it included 44 questions in three domains:
Part 4 (adolescents’ knowledge about treatment complications and allergic reaction to factor VIII and blood products) – it included seven questions in one domain: 1. K7 (18marks): It included seven questions to test knowledge about treatment complications and allergic reaction to factor VIII and blood product. Structured interview sheet scoring system – The correct answer was scored one and the incorrect one was scored zero. For each part, scores of items were divided according to the median into satisfactory if ≥50% and unsatisfactory if
