HEMOPHILIA-SPECIFIC QUALITY OF LIFE INDEX (Haemo-QoL AND Haem-A-QoL QUESTIONNAIRES) OF CHILDREN AND ADULTS: Result of a Single Center from Turkey

Mercan, Arzu; Sarper, Nazan; İnanır, Murat; Mercan, Halil İrfan; Zengin, Emine; Kılıç, Suar Çakı; Gökalp, Ayşe Sevim

doi:10.3109/08880018.2010.489933

Cited by 44 publications

(80 citation statements)

References 15 publications

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“…Adult baseline Haemo-QoL TSS of 67 and 76 in this evaluation were substantially higher than those previously reported by Mercan et al (2010), 13 indicating more impairment among U.S. adults than Turkish adults, although there are no specific norms for U.S. versus Turkish patients. Pediatric TSS in this study (21-23 in ages 4-7; 21-30 in ages 8-17) were comparable with those in European reports by Gringeri et al (2004 14 ;…”

Section: Be Empowered a Specialty Pharmacy Education Program For Hemcontrasting

confidence: 47%

“…BE EMPOWERED Mercan et al 13 Gringeri et al 14 that the study utilized patient self-reported measures. While patient-reported outcomes are often and increasingly utilized in research, it is recognized that a certain level of bias may have been introduced through this method.…”

Section: Domain Tss [Sd]mentioning

confidence: 99%

“…12,13 This assessment was done at baseline and at follow-up. Patients were considered to be adherent if their MPRs were ≥ 1, or "persistence" to prescribed treatment was categorized as excellent.…”

mentioning

confidence: 99%

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BE EMPOWERED, A Specialty Pharmacy Education Program for Hemophilia B Patients, Impacts Adult Joint Bleeds and Pediatric Use of RICE

Blankenship

Tortella²,

Bruno³

2014

JMCP

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BACKGROUND: Traditional education about hemophilia B in hemophilia treatment centers (HTCs) and episodic contact with HTCs limit the amount of education patients and their caregivers receive. Specialty care providers have frequent, continuing contact with patients. Each contact with a specialty care provider (e.g., coordinating a refill or addressing a patient inquiry) is another opportunity to support patient self-management of the disease and to give counsel on appropriate medication administration. The role of specialty pharmacy in improving patient self-management and supporting medication management and adherence is well established and reported with rheumatoid arthritis, multiple sclerosis, and renal transplant. With hemophilia, specialty pharmacies can support educational reinforcement of HTCs as well as support patient self-management and education of medication therapy. Utilization of patient education materials and programs can facilitate such a role. BE EMPOWERED, a specialty pharmacy education program for hemophilia B patients, is a multimodule education program coupled with frequent telephonic outreach.OBJECTIVE: To provide education about hemophilia B, based upon discrete curriculum modules, facilitated by a specialty pharmacy-based nurse educator.METHODS: Patients with hemophilia B (or, for children, their caregivers) were enrolled in the BE EMPOWERED program, and data were prospectively collected regarding bleeding and hemophilia-specific quality of life (QoL) outcomes (n = 21 caregivers, n = 17 adults). RESULTS: BE EMPOWERED was associated with a statistically significant impact on the use of RICE (rest, ice, compression, and elevation) by caregivers whose utilization increased from 81% to 95% (P = 0.05). Adults in the BE EMPOWERED program experienced a statistically significant drop in the annualized bleeding rate (ABR), decreasing from 4.7 to 2.5 for total bleeds and decreasing from 3.5 to 1.7 for joint bleeds (P ≤ 0.02). For children with hemophilia B, bleeds were less common overall, as reported by their caregivers, with a mean ABR of 1.1 before and 1.2 following the program. Regarding QoL scores, adults had lower scores compared with children enrolled in the program.CONCLUSIONS: Completion of the BE EMPOWERED program was associated with a decrease in total bleeds and in joint bleeds in adults and with increased RICE utilization in children, as reported by caregivers. QoL scores were lower in adults compared with children, and further research is warranted to understand this difference. Future studies may focus on the effect of specialty pharmacy as an educational vehicle with potential cost benefits.

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Section: Be Empowered a Specialty Pharmacy Education Program For Hemcontrasting

confidence: 47%

Section: Domain Tss [Sd]mentioning

confidence: 99%

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BE EMPOWERED, A Specialty Pharmacy Education Program for Hemophilia B Patients, Impacts Adult Joint Bleeds and Pediatric Use of RICE

Blankenship

Tortella²,

Bruno³

2014

JMCP

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“…Possible cause could be explained by less severity and frequency of bleeding episodes in patients with RBDs compared with hemophiliacs. However, in the literature there are some reports of better Haemo-QOL scores in children with hemophilia in both developed and developing countries such as 33.8 + 15.5 in 8-to 16-and 35 + 16.1in 4-to 7-year-old children in the United States, 16 and 39.6 + 15.0 in 4-to 16-year-old children in Turkey, 17 indicating higher impairments in QOL of our patients with RBDs as well as our patients with hemophilia compared to those in other countries. Also, health-related QOL was reported as satisfactory in 4-to 16-year-old children with severe hemophilia residents in 6 countries of Western Europe.…”

Section: Discussionmentioning

confidence: 99%

Quality of Life in Children and Adolescents With Rare Bleeding Disorders in Southern Iran

Haghpanah

Mohtadi

Akbari

et al. 2016

Clin Appl Thromb Hemost

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The aim of this study is to evaluate quality of life (QOL) in patients with rare bleeding disorders (RBDs). In this cross-sectional study, 52 consecutive children aged between 4 and 18 years old with RBDs registered at the Haemophila Center of Fars province in Southern Iran were investigated from January to April 2015. Quality of life was evaluated using Haemo-QOL questionnaire. Final score is defined between 0 and 100, and higher score of QOL shows worse condition. P value less than .05 was considered statistically significant. Mean age of the patients was 13.96 + 4.50 and ranged from 4 to 18 years old including 28 males and 24 females. Family and friends were the 2 most impaired domains of Haemo-QOL in these patients. In univariate analysis, bleeding severity based on bleeding score, health status, and being bothered by the disease showed statistically significant correlations with QOL of the patients (P < .05). In multiple linear regression models, only degree of being bothered by the disease was determined as an independent influencing factor on QOL. Taking together, Haemo-QOL of children with RBDs was better than what was reported in patients with hemophilia in our region, but it was worse than that reported in patients with hemophilia in other developing and developed countries. Due to chronic feature of bleeding disorders, more attention to different aspects of the disease, especially in 2 dimensions of family and friends through considering educational and psychological program for the patients and their family, are recommended to improve QOL of the patients with RBDs.

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“…Compared to the Turkish, Egyptian and Iranian over-all mean TSS of 39.6 ± 15.0, ≥ 50 and 54.1 ± 7.3 respectively, the total mean TSS in our study is 28.39 ± 4.76, reflecting a good QoL of Filipino children with hemophilia seen in our center [9][10][11]. This, however, should be interpreted with caution since majority of the respondents had moderate disease as compared with the Turkish and Egyptian studies where majority of the respondents had severe hemophilia.…”

Section: Discussionmentioning

confidence: 39%

Health – Related Quality of Life Assessment in Filipino Children with Hemophilia Aged 4 To 16 Years in a Tertiary Hospital

Hernandez¹

2014

J Hematol Thrombo Dis

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Background: Determining how hemophilia and its treatment may affect the quality of life of children with this bleeding disorder is feasible by using hemophilia-specific Quality Of Life (QoL) questionnaire. Objectives:To determine the health-related QoL of Filipino children with hemophilia treated in a tertiary hospital, specifically to identify the factors that significantly influence the quality of life of these children, and correlate sociodemographic data with patient and parent reported health-related quality of life. Methods:A cross-sectional study was conducted on all children with hemophilia aged 4 to 16 years and their parents who are seen at the University of Santo Tomas Hospital Hemophilia Out-Patient Clinic for follow up care from July to December 2012 using the Haemo-QoL questionnaire for Filipinos.Results: Fifty one patients were included in the study. Group I showed most impairment in the subscale of Family (43.75 ± 36.8), while Groups II and III showed most impairment in Sports and School subscale (Group II: 58.2 ± 18.77; Group III: 59.27 ± 17.46). Group I showed least impairment in Attitude (6.25 ± 7.60) while Groups II and III had least impairment in Treatment subscale (Group II: 12.5 ± 15.26; Group III: 23.99 ± 11.02). Parents' scores reflect the same areas of concern with that of the child's. The total mean TSS in our study is 28.39 ± 4.76, reflecting the good QoL of our patients. Conclusion:Identifying the areas of impairment among children with hemophilia and their parents can help clinicians address these concerns; improve their understanding of the disease and their quality of life.

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HEMOPHILIA-SPECIFIC QUALITY OF LIFE INDEX (Haemo-QoL AND Haem-A-QoL QUESTIONNAIRES) OF CHILDREN AND ADULTS: Result of a Single Center from Turkey

Cited by 44 publications

References 15 publications

BE EMPOWERED, A Specialty Pharmacy Education Program for Hemophilia B Patients, Impacts Adult Joint Bleeds and Pediatric Use of RICE

BE EMPOWERED, A Specialty Pharmacy Education Program for Hemophilia B Patients, Impacts Adult Joint Bleeds and Pediatric Use of RICE

Quality of Life in Children and Adolescents With Rare Bleeding Disorders in Southern Iran

Health – Related Quality of Life Assessment in Filipino Children with Hemophilia Aged 4 To 16 Years in a Tertiary Hospital

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