The impact of haemophilia on the social status and the health‐related quality of life in adult Lebanese persons with haemophilia

Naous, Elie; Moerloose, Philippe de; Sleilaty, Ghassan; Casini, Alessandro; Khayat, Claudia Djambas

doi:10.1111/hae.13694

Cited by 6 publications

(5 citation statements)

References 18 publications

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“…Despite the PWH practice less sport activities than children, either report engaging in low‐risk sports in line with the recommendation by the US National Hemophilia Foundation and the World Foundation of Hemophilia 15,16 . Furthermore, physical activity is often associated with positive effects on physical well‐being, on self‐esteem and social interactions 17 .…”

Section: Discussionmentioning

confidence: 89%

“…Despite the PWH practice less sport activities than children, either report engaging in low-risk sports in line with the recommendation by the US National Hemophilia Foundation and the World Foundation of Hemophilia. 15,16 Furthermore, physical activity is often associated with positive effects on physical well-being, on self-esteem and social interactions. 17 Swimming was the most practiced both in adults and children, but some higher risk activities were also reported, in particular soccer (by adults and children), basketball and volleyball (by children).…”

Section: Discussionmentioning

confidence: 99%

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The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey

Fornari,

Antonazzo,

Rocino

et al. 2023

Haemophilia

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BackgroudA huge amount of data about psychosocial issues of people with haemophilia (PwH) are available; however, these materials are fragmentary and largely outdated, failing to reflect the impact of current treatment strategies.AimDescribing the influence of illness on psychosocial aspects of adult PwH (≥18 years) and caregivers of children with haemophilia (CPwH) without inhibitors, in Italy.MethodsSurveys (for adult PwH, CPwH and haemophilia specialists) were developed by a multidisciplinary working group and conducted from November 2019 to June 2020.ResultsA total of 120 PwH without inhibitors and 79 CPwH completed the survey. Adult patients reported a significant impairment in many psychosocial aspects, including working activities, relations with family members and social relations. Caregivers generally reported better scores in all aspects of the survey. Mobility, Pain and Mental health domains of EQ‐5D were the most frequently impaired in both patients and caregivers, reducing the perceived quality of life. Genetic counselling was an important issue, 53% of CPwH declaring unawareness of their carrier status, as well as the psychological support offered by the reference center, 67.0% of respondents reporting that no psychological support was provided at the time of diagnosis communication.ConclusionThis study provides information about PwH's and CPwH's point of view in the current scenario of continuous innovations in haemophilia treatment and management furthermore, updated insights on psychosocial problems faced by patients and caregivers are reported.

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Section: Discussionmentioning

confidence: 89%

Section: Discussionmentioning

confidence: 99%

The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey

Fornari,

Antonazzo,

Rocino

et al. 2023

Haemophilia

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“…Hemophilia A has a prevalence of 17.1 cases per 100,000 males, with 6.0 cases per 100,000 males being severe Hemophilia A [14]. Despite being a rare disorder, hemophilia A poses a remarkable burden on health infrastructure [15] due to its debilitating nature [16], causing joint deformity [17] and even life-threatening bleeding [4].…”

Section: Discussionmentioning

confidence: 99%

Management of Severe Hemophilia A: Low-Dose Prophylaxis vs. On-Demand Treatment

Ali¹,

Abid²,

Zafar³

et al. 2023

Cureus

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Introduction: Prophylactic clotting factor infusion regimens to prevent bleeding and joint deformity has become the standard of care in severe hemophilia A patients.Aim: To assess low-dose factor prophylaxis in our population as an alternative approach to managing severe hemophilia A.Methods: A prospective cohort study that included 68 hemophilia A patients divided into two groups, i.e., Prophylaxis and on-demand. The two groups were compared for annualized bleeding rate (ABR), hospitalization, units of factor VIII (FVIII) infused, or plasma products transfused, i.e., fresh frozen plasma (FFP) and cryoprecipitate (CP), and development of FVIII inhibitors.Results: Of the 68 patients recruited in this study, 25 (36.7%) were in the prophylaxis group, and 43(63.3%) were in the on-demand group. The on-demand group presented a higher median-IQR ABR [8(20-3) vs. 5(10-1.5), p-value 0.024], several hospitalizations (39.7% vs. 0, p-value 0.001), and inhibitor development (9.3% vs. 0, p-value 0.289) compared to the prophylaxis group. The prophylaxis approach demonstrated a significant negative correlation of ABR with FVIII prophylaxis (r=-0484, p=value=0.014). Moreover, no hospitalizations or inhibitor development was observed in the prophylaxis group. The estimated annual consumption of FVIII was 328 IU/kg/year in the on-demand group and 1662.6 IU/kg/year in the prophylaxis group. However, a highly significant difference in plasma product utilization was observed between the two groups, i.e., p-value <0.001 and 0.038 for FFP and CP, respectively. Conclusion: Low-dose factor prophylaxis resulted in improved outcomes compared to on-demand treatment in terms of ABR, joint bleeding, hospitalization, and the development of inhibitors. This treatment approach should be adopted as an economically feasible alternative to high-dose Prophylaxis in resource-constrained countries.

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“…Our study did not look at the socio-economic aspects of pain among participants, but studies elsewhere have indicated that this has an impact [1,35,36] . Future research should include an overall clinical assessment of PwH who experience pain, with a comparison of socioeconomic factors between those who do and do not suffer from pain in our local setting.…”

Section: Limitationsmentioning

confidence: 99%

Pain assessment and management in the Moroccan haemophilia population: a prospective descriptive study

Sraidi,

Naim,

Lamchahab

et al. 2023

The Journal of Haemophilia Practice

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Introduction For people with haemophilia (PwH) who live in developing countries, haemophilia continues to be a condition with serious medical and social consequences. In Morocco, the efforts of patient associations and medical teams have led to the creation of a national programme for haemophilia care since the end of 2012, and the country is no longer solely reliant on World Federation of Hemophilia (WFH) donations for access to factor products. There is growing recognition of the impact of the pain experienced by PwH. To continue to improve treatment for PwH in Morocco, it is important to ensure that they are also able to manage haemophilia-related pain. Aims This study aims to describe the prevalence, characteristics, and effects of pain experienced by PwH in Morocco for the first time, in order to increase understanding, and to support consideration of interventions and improvements in care. Methods We conducted a prospective, descriptive survey of the experience of pain in PwH attending the Department of Clinical Hematology and Pediatric Oncology in Casablanca, using the Multidimensional Hemophilia Pain Questionnaire (MHQP) approved by the WFH. All PwH with mild, moderate or severe haemophilia and over 18 years of age who presented to the department during the study period were included; consent was obtained. The data collection period lasted 6 months from October 2020 to April 2021. Results 60 PwH completed the questionnaire (51 haemophilia A, 9 haemophilia B; 38 severe, 22 moderate). All respondents had experienced pain, 90% during the previous year and 75% during the last 3 months. 60% reported the occurrence of pain more than once a week. 65% reported that the right knee was the most painful site in the past year, followed by the right ankle (58%). The right knee was also the site of pain with the most negative impact in the past year. 58% responded that the evening was the time of most intense pain. The therapeutic strategies used against pain were pharmacological and non-pharmacological. 60% of respondents reported using analgesics and 50% reported using coagulation factor substitution for pain relief. Regarding non-pharmacological strategies, rest was reported by 40%, elevation of the painful site/change of position by 20%, and ice by 10%. The majority reported being satisfied or very satisfied with the current treatment of their pain by health professionals. Conclusion This study shows that pain is still very present in PwH treated at our haemophilia centre, with a significant impact on different areas of life. There is a need for action to standardise treatment approaches and develop protocols for pain management in PwH.

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The impact of haemophilia on the social status and the health‐related quality of life in adult Lebanese persons with haemophilia

Cited by 6 publications

References 18 publications

The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey

The psychosocial impact of haemophilia from patients’ and caregivers’ point of view: The results of an Italian survey

Management of Severe Hemophilia A: Low-Dose Prophylaxis vs. On-Demand Treatment

Pain assessment and management in the Moroccan haemophilia population: a prospective descriptive study

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