Abstract Introduction Haemophilia is an X-linked congenital bleeding disorder due to deficiency of coagulation factor VIII (in haemophilia A) or factor IX (in haemophilia B) caused by mutations of the respective clotting factor genes. Treatment involves the administration of an appropriate dose of factor concentrate, as soon as possible, in the event of any bleeding episode. In low-resource settings, such as Northeast India, where factor concentrates are not widely available, people with haemophilia (PwH) may bleed profusely even from trivial external injuries, warranting transfusion of blood or blood products. We previously reported on the use of a low cost, foam-based haemostatic patch to treat an external bleed in a single patient. In this study, we investigated its use to treat a range of external injuries in PwH presenting at Assam Medical College and Hospital. Method Over 24 months, eligible PwH with external injuries attending our haemophilia clinic were treated with a topical haemostatic patch (VELSEAL-T) at the target bleeding site. The time to cessation of bleeding was recorded and the wound sites evaluated after haemostasis to monitor efficacy and safety. Results Out of 72 individuals with bleeding disorders who volunteered to participate, 59 cases of external bleeding in 48 PwH were eligible for inclusion in the study. Nine (15.3%) had aberration wounds, 24 (40.7%) cut wounds, 21 (35.6%) tooth and/or gum bleeding and five (8.4%) bleeding from puncture wounds. The average time required for achievement of haemostasis was 9.9 (±4.7) minutes. Aberration wounds required the least amount of time for haemostasis at 7.3 (±4.4) minutes. Cut wounds required a mean time of 8.5 (±2.9) minutes; puncture wounds required 9.0 (±3.1) minutes; gum bleeding required the longest time to achieve haemostasis with a mean of 12.7 (±5.6) minutes. Conclusion The use of this topical haemostatic patch has been shown to be beneficial in the treatment of external injuries in PwH, and provides a good treatment option in resource-constrained areas. A larger controlled study would be helpful to further investigate its efficacy and safety.
{"title":"Haemostatic action of a topical foam-based patch (VELSEAL-T) in haemophiliac patients with external bleeding","authors":"Anupam Dutta, T. Dutta, A. Das, P. Dey","doi":"10.17225/jhp00160","DOIUrl":"https://doi.org/10.17225/jhp00160","url":null,"abstract":"Abstract Introduction Haemophilia is an X-linked congenital bleeding disorder due to deficiency of coagulation factor VIII (in haemophilia A) or factor IX (in haemophilia B) caused by mutations of the respective clotting factor genes. Treatment involves the administration of an appropriate dose of factor concentrate, as soon as possible, in the event of any bleeding episode. In low-resource settings, such as Northeast India, where factor concentrates are not widely available, people with haemophilia (PwH) may bleed profusely even from trivial external injuries, warranting transfusion of blood or blood products. We previously reported on the use of a low cost, foam-based haemostatic patch to treat an external bleed in a single patient. In this study, we investigated its use to treat a range of external injuries in PwH presenting at Assam Medical College and Hospital. Method Over 24 months, eligible PwH with external injuries attending our haemophilia clinic were treated with a topical haemostatic patch (VELSEAL-T) at the target bleeding site. The time to cessation of bleeding was recorded and the wound sites evaluated after haemostasis to monitor efficacy and safety. Results Out of 72 individuals with bleeding disorders who volunteered to participate, 59 cases of external bleeding in 48 PwH were eligible for inclusion in the study. Nine (15.3%) had aberration wounds, 24 (40.7%) cut wounds, 21 (35.6%) tooth and/or gum bleeding and five (8.4%) bleeding from puncture wounds. The average time required for achievement of haemostasis was 9.9 (±4.7) minutes. Aberration wounds required the least amount of time for haemostasis at 7.3 (±4.4) minutes. Cut wounds required a mean time of 8.5 (±2.9) minutes; puncture wounds required 9.0 (±3.1) minutes; gum bleeding required the longest time to achieve haemostasis with a mean of 12.7 (±5.6) minutes. Conclusion The use of this topical haemostatic patch has been shown to be beneficial in the treatment of external injuries in PwH, and provides a good treatment option in resource-constrained areas. A larger controlled study would be helpful to further investigate its efficacy and safety.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115202427","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
M. Bloomberg, K. Sargenton, K. Gattamorta, D. Anglade
Abstract Factor replacement is currently the standard of care to prevent or treat bleeding episodes in haemophilia patients. This study examined current prescribing practices of factor therapy for patients at haemophilia treatment centres (HTCs) in the United States. Aims The aims were to evaluate the driving forces for prescribing factor products, to evaluate current attitudes and knowledge toward factor product and industry, and to discuss the implications for health care providers in practice. Methods An anonymous electronic survey was distributed to 744 HTC health care providers (HCPs); 118 responses were analysed. Results The most common driving force for HCPs to change a patient's factor product was poor response to current therapy, while the most common perception of patients’ motivation to switch products was the potential for fewer infusions. HCPs with strong influence over the prescribed therapy identified inadequate pharmacokinetic (PK) studies as an important driving force; patients/caregivers perceived as having a strong influence over which therapy is prescribed selected less frequent dosing as an important motivator. HCPs who allow patients/caregivers to have a strong influence over which factor is prescribed were more likely to cite patient/caregiver request as a significant driving force for change in therapy. Conclusion The haemophilia treatment landscape continues to evolve and is becoming increasingly complex. The multitude of treatment options available now offer choices, presenting a need to focus on patient-centric prophylaxis.
{"title":"Knowledge, attitude and practice of health care providers toward prescribing factor replacement at federally funded haemophilia treatment centres in the United States","authors":"M. Bloomberg, K. Sargenton, K. Gattamorta, D. Anglade","doi":"10.17225/jhp00165","DOIUrl":"https://doi.org/10.17225/jhp00165","url":null,"abstract":"Abstract Factor replacement is currently the standard of care to prevent or treat bleeding episodes in haemophilia patients. This study examined current prescribing practices of factor therapy for patients at haemophilia treatment centres (HTCs) in the United States. Aims The aims were to evaluate the driving forces for prescribing factor products, to evaluate current attitudes and knowledge toward factor product and industry, and to discuss the implications for health care providers in practice. Methods An anonymous electronic survey was distributed to 744 HTC health care providers (HCPs); 118 responses were analysed. Results The most common driving force for HCPs to change a patient's factor product was poor response to current therapy, while the most common perception of patients’ motivation to switch products was the potential for fewer infusions. HCPs with strong influence over the prescribed therapy identified inadequate pharmacokinetic (PK) studies as an important driving force; patients/caregivers perceived as having a strong influence over which therapy is prescribed selected less frequent dosing as an important motivator. HCPs who allow patients/caregivers to have a strong influence over which factor is prescribed were more likely to cite patient/caregiver request as a significant driving force for change in therapy. Conclusion The haemophilia treatment landscape continues to evolve and is becoming increasingly complex. The multitude of treatment options available now offer choices, presenting a need to focus on patient-centric prophylaxis.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"78 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"115757417","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Y. Diallo, A. Poudiougo, B. Drame, A. Traore, Y. Cissoko, M. Doumbere, H. Kone, Z. Sountoura, A. Diakite, A. Sidibe, J. Schved
Abstract Introduction Around 90% of all undiagnosed people with haemophilia (PWH) live in developing countries. In Mali, in sub-Saharan Africa, nearly 90% of potential PWH are not identified. We initiated a two-year study involving an integrated programme of training and awareness-raising with the aim of improving diagnosis and access to care for PWH, based on partnership with those who regularly interact with them. Methodology Our training programme focused on four regions of Mali and the district of Bamako, and included three types of health professionals from different districts and hospitals: medical doctor, nurse and laboratory technician. We also targeted traditional healers, who continue to be strongly involved in local healthcare, and provided training sessions for patients and their families on the symptoms, diagnosis, treatment and complications of haemophilia. A complementary programme of awareness-raising, including the national media, ran alongside the training sessions. Results Overall, the programme involved 495 participants: 213 health care professionals, 24 patients, 79 parents of patients, 126 traditional healers, and 53 media workers. A direct result was development of collaboration between these groups in identifying haemophilia, and the transfer of four patients from a traditional healer's office to hospital for diagnosis and treatment. The number of diagnosed PWH increased from 42 in 2016 to 126 in 2017. Conclusion The integrated haemophilia educational programme, which took into account the nature of the local environment and involved all relevant stakeholders, showed that taking a collaborative approach is a successful strategy for improving diagnosis and care for PWH in Mali. This approach could be relevant in other developing countries.
{"title":"Improving haemophilia diagnosis in developing countries: the Malian experience","authors":"Y. Diallo, A. Poudiougo, B. Drame, A. Traore, Y. Cissoko, M. Doumbere, H. Kone, Z. Sountoura, A. Diakite, A. Sidibe, J. Schved","doi":"10.17225/jhp00135","DOIUrl":"https://doi.org/10.17225/jhp00135","url":null,"abstract":"Abstract Introduction Around 90% of all undiagnosed people with haemophilia (PWH) live in developing countries. In Mali, in sub-Saharan Africa, nearly 90% of potential PWH are not identified. We initiated a two-year study involving an integrated programme of training and awareness-raising with the aim of improving diagnosis and access to care for PWH, based on partnership with those who regularly interact with them. Methodology Our training programme focused on four regions of Mali and the district of Bamako, and included three types of health professionals from different districts and hospitals: medical doctor, nurse and laboratory technician. We also targeted traditional healers, who continue to be strongly involved in local healthcare, and provided training sessions for patients and their families on the symptoms, diagnosis, treatment and complications of haemophilia. A complementary programme of awareness-raising, including the national media, ran alongside the training sessions. Results Overall, the programme involved 495 participants: 213 health care professionals, 24 patients, 79 parents of patients, 126 traditional healers, and 53 media workers. A direct result was development of collaboration between these groups in identifying haemophilia, and the transfer of four patients from a traditional healer's office to hospital for diagnosis and treatment. The number of diagnosed PWH increased from 42 in 2016 to 126 in 2017. Conclusion The integrated haemophilia educational programme, which took into account the nature of the local environment and involved all relevant stakeholders, showed that taking a collaborative approach is a successful strategy for improving diagnosis and care for PWH in Mali. This approach could be relevant in other developing countries.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"40 6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"123221788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anupam Dutta, Dipjyoti Boruah, T. Dutta, Angshuman Boruah, B. Dhal
Abstract Background Patients with haemophilia who are not adequately treated experience a lifetime burden of joint complications and loss of functional ability due to repeated bleeding episodes caused by low levels of clotting factor VIII or IX in the blood. These complications can significantly impact day-to-day life, including active participation in school and academic study in children with haemophilia (CwH). Treatment with factor replacement therapy can help to prevent this, but access to factor has been challenging in low-resource settings such as Northeast India. This study shows the impact of factor replacement therapy on bleeding episodes, joint complications and school absence among CwH in this setting. Methods A retrospective observational study was undertaken to examine the impact of receiving regular factor replacement therapy (prophylaxis or on demand) on school absences among CwH registered with the haemophilia treatment centre at Assam Medical College and Hospital. Annual bleed rate (ABR), Haemophilia Joint Health Score (HJHS) and Functional Independence Score in Haemophilia (FISH) were also assessed. Results Thirty-eight CwH were eligible for the study; 26 (68.4%) were on prophylaxis therapy and 12 (31.5%) received on-demand therapy. In the year before starting regular treatment, the mean ABR was 37.8 (+20.0), HJHS was 31.1 (+18.1) and mean FISH score was 21.1 (+4.2). At the end of the study period the mean (+SD) ABR in prophylactic therapy was significantly lower at 5.8 (+4.6) (p<0.001) and the HJHS was significantly lower at 4.7 (+4.6). FISH score significantly improved to 27.9 (+3.3) (p<0.001). Prophylaxis showed better (but not significant) results in comparison to on-demand therapy. Conclusions Treatment with factor replacement significantly reduces school absence in CwH and correlates strongly with joint health and functional improvement, with the effect slightly better with prophylaxis than on-demand therapy. Low dose prophylaxis is a good treatment option in low-resource settings, but improvements are also needed in rates of diagnosis.
{"title":"Improvement in school absence after factor replacement in students with haemophilia in Upper Assam, India","authors":"Anupam Dutta, Dipjyoti Boruah, T. Dutta, Angshuman Boruah, B. Dhal","doi":"10.17225/jhp00166","DOIUrl":"https://doi.org/10.17225/jhp00166","url":null,"abstract":"Abstract Background Patients with haemophilia who are not adequately treated experience a lifetime burden of joint complications and loss of functional ability due to repeated bleeding episodes caused by low levels of clotting factor VIII or IX in the blood. These complications can significantly impact day-to-day life, including active participation in school and academic study in children with haemophilia (CwH). Treatment with factor replacement therapy can help to prevent this, but access to factor has been challenging in low-resource settings such as Northeast India. This study shows the impact of factor replacement therapy on bleeding episodes, joint complications and school absence among CwH in this setting. Methods A retrospective observational study was undertaken to examine the impact of receiving regular factor replacement therapy (prophylaxis or on demand) on school absences among CwH registered with the haemophilia treatment centre at Assam Medical College and Hospital. Annual bleed rate (ABR), Haemophilia Joint Health Score (HJHS) and Functional Independence Score in Haemophilia (FISH) were also assessed. Results Thirty-eight CwH were eligible for the study; 26 (68.4%) were on prophylaxis therapy and 12 (31.5%) received on-demand therapy. In the year before starting regular treatment, the mean ABR was 37.8 (+20.0), HJHS was 31.1 (+18.1) and mean FISH score was 21.1 (+4.2). At the end of the study period the mean (+SD) ABR in prophylactic therapy was significantly lower at 5.8 (+4.6) (p<0.001) and the HJHS was significantly lower at 4.7 (+4.6). FISH score significantly improved to 27.9 (+3.3) (p<0.001). Prophylaxis showed better (but not significant) results in comparison to on-demand therapy. Conclusions Treatment with factor replacement significantly reduces school absence in CwH and correlates strongly with joint health and functional improvement, with the effect slightly better with prophylaxis than on-demand therapy. Low dose prophylaxis is a good treatment option in low-resource settings, but improvements are also needed in rates of diagnosis.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"5 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132507106","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T. Hughes, Mikkel Brok-Kristensen, Yosha Gargeya, Anne Mette Worsøe Lottrup, Ask Bo Larsen, A. Torres-Ortuño, N. Mackett, J. Stevens
Abstract Background Recent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia. Aims The aim of this article is to further investigate findings related to how health care professionals (HCPs) approach haemophilia treatment and care, one of the main themes identified in an ethnographic study of the everyday life of people with haemophilia (PwH). This large-scale study investigated PwH's beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition. Methods The study used ethnographic research methods. Five haemophilia experts helped frame the research design by providing historical and disease area context prior to the initation of field research. In the field, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs. Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related specifically to how HCPs approach haemophilia treatment and care, and is thus focused on a subset of the data from the study. Results Fifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives. Eighteen HCPs from seven HTCs were interviewed, and on-site observation was undertaken at six of the HTCs. Most haematologists in the study ‘treated for stability’, rather than to guide PwH to overcome limitations. ‘Treating for stability’ here refers to an approach to haemophilia care that focuses on measuring success in terms of annual bleed rate, instilling a focus on mitigating risk, rather than an approach that allows PwH to overcome the limitations they face due to their condition. However, some haematologists had moved beyond treating for stability to instead treat for possibilities, enabling a better quality of life for PwH. Conclusions These results suggest that a culture of ‘treating for stability’ could be limiting progress in expanding the goals of treatment in haemophilia. Expanded metrics of success, more flexible approaches to treatment, and higher ambitions on behalf of PwH may be needed in treatment and care, in order for PwH to fully benefit from treatment advances and to increase their quality of life.
{"title":"Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe","authors":"T. Hughes, Mikkel Brok-Kristensen, Yosha Gargeya, Anne Mette Worsøe Lottrup, Ask Bo Larsen, A. Torres-Ortuño, N. Mackett, J. Stevens","doi":"10.17225/jhp00169","DOIUrl":"https://doi.org/10.17225/jhp00169","url":null,"abstract":"Abstract Background Recent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia. Aims The aim of this article is to further investigate findings related to how health care professionals (HCPs) approach haemophilia treatment and care, one of the main themes identified in an ethnographic study of the everyday life of people with haemophilia (PwH). This large-scale study investigated PwH's beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition. Methods The study used ethnographic research methods. Five haemophilia experts helped frame the research design by providing historical and disease area context prior to the initation of field research. In the field, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs. Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related specifically to how HCPs approach haemophilia treatment and care, and is thus focused on a subset of the data from the study. Results Fifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives. Eighteen HCPs from seven HTCs were interviewed, and on-site observation was undertaken at six of the HTCs. Most haematologists in the study ‘treated for stability’, rather than to guide PwH to overcome limitations. ‘Treating for stability’ here refers to an approach to haemophilia care that focuses on measuring success in terms of annual bleed rate, instilling a focus on mitigating risk, rather than an approach that allows PwH to overcome the limitations they face due to their condition. However, some haematologists had moved beyond treating for stability to instead treat for possibilities, enabling a better quality of life for PwH. Conclusions These results suggest that a culture of ‘treating for stability’ could be limiting progress in expanding the goals of treatment in haemophilia. Expanded metrics of success, more flexible approaches to treatment, and higher ambitions on behalf of PwH may be needed in treatment and care, in order for PwH to fully benefit from treatment advances and to increase their quality of life.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"14 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132138738","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jennifer King, K. Fletcher, Susan M. Tupper, K. Brose, D. Goodridge
Abstract Background Pain associated with bleeding disorders has been demonstrated to have an impact on patients’ and families’ quality of life. Both acute and chronic pain are common experiences and require attention by professionals working in haemophilia treatment centres (HTCs). The benefits of psychological pain management strategies such as cognitive behaviour therapy and self-management skills training are well documented; however, it is not well understood how Canadian social workers involved in haemophilia care perceive and provide pain management support to patients. Aims To explore the current understanding of pain management and practice as well as the education needs of members of Canadian Social Workers in Hemophilia Care (CSWHC). Method Twelve semi-structured qualitative interviews were conducted with members of CSWHC. Transcribed interviews were coded with NVivo software and thematically analysed. Results The four key themes reflecting the experiences of social workers are: 1) Limited comprehension of key issues related to pain; 2) Conditioning to push through pain; 3) Expanding pain knowledge to enhance practice; 4) How we practice social work and choose to step in. Conclusion The current practice of CSWHC members aligns with literature in three main areas including assessment, instrumental services, and counselling. Social workers support the development of pain education and practical resources for patients with haemophilia who experience pain. While formal education, advocacy, and policy development of pain assessment and management are recognised, these areas require further research and development.
{"title":"Pain management in bleeding disorders care: perspectives of Canadian Social Workers in Hemophilia Care","authors":"Jennifer King, K. Fletcher, Susan M. Tupper, K. Brose, D. Goodridge","doi":"10.17225/jhp00163","DOIUrl":"https://doi.org/10.17225/jhp00163","url":null,"abstract":"Abstract Background Pain associated with bleeding disorders has been demonstrated to have an impact on patients’ and families’ quality of life. Both acute and chronic pain are common experiences and require attention by professionals working in haemophilia treatment centres (HTCs). The benefits of psychological pain management strategies such as cognitive behaviour therapy and self-management skills training are well documented; however, it is not well understood how Canadian social workers involved in haemophilia care perceive and provide pain management support to patients. Aims To explore the current understanding of pain management and practice as well as the education needs of members of Canadian Social Workers in Hemophilia Care (CSWHC). Method Twelve semi-structured qualitative interviews were conducted with members of CSWHC. Transcribed interviews were coded with NVivo software and thematically analysed. Results The four key themes reflecting the experiences of social workers are: 1) Limited comprehension of key issues related to pain; 2) Conditioning to push through pain; 3) Expanding pain knowledge to enhance practice; 4) How we practice social work and choose to step in. Conclusion The current practice of CSWHC members aligns with literature in three main areas including assessment, instrumental services, and counselling. Social workers support the development of pain education and practical resources for patients with haemophilia who experience pain. While formal education, advocacy, and policy development of pain assessment and management are recognised, these areas require further research and development.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"130397974","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Management of haemophilia A requires administration of factor VIII therapy which, for those with severe haemophilia A in the UK, is predominantly self-administered at home in a prophylactic regimen to prevent or minimise bleeding. The UK undertakes a national tendering process every three years to ensure access to current and new therapies at a cost-effective price, through contracting for large volumes from individual suppliers. This means that some products may no longer be available and that new products can enter the UK market at any tendering stage. In the latest tendering round, in 2018, more than one product was withdrawn from the UK market and a new product (NovoEight®; Novo Nordisk) was added to the prescribing list. This meant people with haemophilia having to change products. The experience of 77 people with haemophilia or their carers who changed treatment products during this process was captured by questionnaires administered by haemophilia nurses from 12 treatment centres. Overall, although people with haemophilia felt that they had little influence in decision making about changing to NovoEight, they were confident with their new treatment including packaging and accessories for administration. This was seen more in those who switched from plasma-derived products where ease of infusion was rated highly. Users’ views of haemophilia treatment should be collected at times of change to identify facilitators and barriers experienced in self-management
{"title":"Experience of switching to NovoEight: views of people with haemophilia","authors":"D. Pollard, K. Khair, M. Holland","doi":"10.17225/jhp00157","DOIUrl":"https://doi.org/10.17225/jhp00157","url":null,"abstract":"Abstract Management of haemophilia A requires administration of factor VIII therapy which, for those with severe haemophilia A in the UK, is predominantly self-administered at home in a prophylactic regimen to prevent or minimise bleeding. The UK undertakes a national tendering process every three years to ensure access to current and new therapies at a cost-effective price, through contracting for large volumes from individual suppliers. This means that some products may no longer be available and that new products can enter the UK market at any tendering stage. In the latest tendering round, in 2018, more than one product was withdrawn from the UK market and a new product (NovoEight®; Novo Nordisk) was added to the prescribing list. This meant people with haemophilia having to change products. The experience of 77 people with haemophilia or their carers who changed treatment products during this process was captured by questionnaires administered by haemophilia nurses from 12 treatment centres. Overall, although people with haemophilia felt that they had little influence in decision making about changing to NovoEight, they were confident with their new treatment including packaging and accessories for administration. This was seen more in those who switched from plasma-derived products where ease of infusion was rated highly. Users’ views of haemophilia treatment should be collected at times of change to identify facilitators and barriers experienced in self-management","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"22 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121734539","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Susan M. Tupper, J. Nilson, Jennifer King, P. Downe, N. Hodgson, T. Schlosser, K. Brose
Abstract Background Chronic pain is common in people with bleeding disorders and can complicate clinical management, impair quality of life, and contribute to disability. People living with bleeding disorders often seek advice on pain management from the bleeding disorder treatment team; however, lack of condition-specific assessment tools to guide clinical communication about pain are a barrier to care. Aims To develop and examine the clinical feasibility of a patient-reported outcome (PRO) tool designed to facilitate pain assessment and support clinical communication about pain for adults attending outpatient bleeding disorder clinics. Methods Tool development involved patient cognitive interviews and item refinement by a multidisciplinary clinician and patient working group. Clinical feasibility of the tool was evaluated with a survey of a small clinical sample in an outpatient bleeding disorder clinic. The Pain Treatment Planning Questionnaire (PTPQ) contains 28 items on the pain experience and treatments used to manage or prevent pain. Results Participants completing the feasibility testing (n=42, 62% male) reported mild mean pain scores (usual pain μ=2.4, SD=2.0) with the majority (57.1%) reporting persistent pain in the past 30 days. Median PTPQ completion time was five to seven minutes and mean item response rate was 95.2%. The majority (95.2%) of participants found the questionnaire easy to understand, reported no difficulty understanding items, and recommended no changes to the questionnaire. Conclusions Preliminary testing among a small sample in a clinical setting suggests that the PTPQ is a clinically feasible, acceptable, condition-specific PRO pain assessment tool for adult patients with bleeding disorders. Further testing is required to determine if the PTPQ affects treatment decision-making and patient outcomes.
{"title":"Development and clinical feasibility testing of the Pain Treatment Planning Questionnaire","authors":"Susan M. Tupper, J. Nilson, Jennifer King, P. Downe, N. Hodgson, T. Schlosser, K. Brose","doi":"10.17225/jhp00155","DOIUrl":"https://doi.org/10.17225/jhp00155","url":null,"abstract":"Abstract Background Chronic pain is common in people with bleeding disorders and can complicate clinical management, impair quality of life, and contribute to disability. People living with bleeding disorders often seek advice on pain management from the bleeding disorder treatment team; however, lack of condition-specific assessment tools to guide clinical communication about pain are a barrier to care. Aims To develop and examine the clinical feasibility of a patient-reported outcome (PRO) tool designed to facilitate pain assessment and support clinical communication about pain for adults attending outpatient bleeding disorder clinics. Methods Tool development involved patient cognitive interviews and item refinement by a multidisciplinary clinician and patient working group. Clinical feasibility of the tool was evaluated with a survey of a small clinical sample in an outpatient bleeding disorder clinic. The Pain Treatment Planning Questionnaire (PTPQ) contains 28 items on the pain experience and treatments used to manage or prevent pain. Results Participants completing the feasibility testing (n=42, 62% male) reported mild mean pain scores (usual pain μ=2.4, SD=2.0) with the majority (57.1%) reporting persistent pain in the past 30 days. Median PTPQ completion time was five to seven minutes and mean item response rate was 95.2%. The majority (95.2%) of participants found the questionnaire easy to understand, reported no difficulty understanding items, and recommended no changes to the questionnaire. Conclusions Preliminary testing among a small sample in a clinical setting suggests that the PTPQ is a clinically feasible, acceptable, condition-specific PRO pain assessment tool for adult patients with bleeding disorders. Further testing is required to determine if the PTPQ affects treatment decision-making and patient outcomes.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"47 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132543803","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
C. Dodd, Alis Trivelli, D. Stephensen, G. Evans, Miranda Foord
Abstract Background The ankle joint is the most common site of bleeding for people with haemophilia (PWH) in the developed world. Recent surveys suggest that PWH do not always have access to non-surgical musculoskeletal interventions and that when provided; there is considerable heterogeneity in clinical practice. Aims To determine patient perceptions and the potential benefits of a new combined multidisciplinary physiotherapy-podiatry haemophilia clinic, and to observe the effect on frequency of bleeds and ankle joint Haemophilia Joint Health Scores (HJHS). Materials and methods PWH with a history of ankle bleeds, pain, foot and/or ankle deformities from a single UK haemophilia centre were referred to the clinic from December 2017 to December 2018. Pre- and post-intervention ankle joint HJHS data and ankle annualised joint bleed rate (AJBR) were collected together with a satisfaction questionnaire asking patients their views on the clinic's value, usefulness and their satisfaction after the initial appointment. Results Twenty-seven PWH (16 children and 11 adults) attended the clinic. All patients agreed or strongly agreed that they were satisfied with the new clinic. The combined multidisciplinary nature of the clinic meant that patients only needed to attend one appointment with the expertise of two professionals, rather than attending two separate appointments. All patients reported it “more useful to see the physiotherapist and podiatrist together”. There were no statistically significant differences in ankle AJBR or HJHS scores post-intervention compared to pre-intervention. Conclusion Establishing a multidisciplinary physiotherapy-podiatry clinic for PWH with a history of ankle bleeds, pain, foot and/or ankle deformities appears to increase patient satisfaction. We did not observe a significant change in ankle AJBR or ankle HJHS scores, suggesting they might not be sufficient to evaluate potential benefits to patients. A larger study incorporating validated tools, focusing on patient-reported foot function, pain, activity and quality of life is needed to confirm if there is any effect of a combined physiotherapy-podiatry intervention on ankle joint AJBR and function.
{"title":"Outcome of a combined physiotherapy and podiatry haemophilia clinic: patient perceptions and the effect on ankle bleeds and joint health","authors":"C. Dodd, Alis Trivelli, D. Stephensen, G. Evans, Miranda Foord","doi":"10.17225/jhp00153","DOIUrl":"https://doi.org/10.17225/jhp00153","url":null,"abstract":"Abstract Background The ankle joint is the most common site of bleeding for people with haemophilia (PWH) in the developed world. Recent surveys suggest that PWH do not always have access to non-surgical musculoskeletal interventions and that when provided; there is considerable heterogeneity in clinical practice. Aims To determine patient perceptions and the potential benefits of a new combined multidisciplinary physiotherapy-podiatry haemophilia clinic, and to observe the effect on frequency of bleeds and ankle joint Haemophilia Joint Health Scores (HJHS). Materials and methods PWH with a history of ankle bleeds, pain, foot and/or ankle deformities from a single UK haemophilia centre were referred to the clinic from December 2017 to December 2018. Pre- and post-intervention ankle joint HJHS data and ankle annualised joint bleed rate (AJBR) were collected together with a satisfaction questionnaire asking patients their views on the clinic's value, usefulness and their satisfaction after the initial appointment. Results Twenty-seven PWH (16 children and 11 adults) attended the clinic. All patients agreed or strongly agreed that they were satisfied with the new clinic. The combined multidisciplinary nature of the clinic meant that patients only needed to attend one appointment with the expertise of two professionals, rather than attending two separate appointments. All patients reported it “more useful to see the physiotherapist and podiatrist together”. There were no statistically significant differences in ankle AJBR or HJHS scores post-intervention compared to pre-intervention. Conclusion Establishing a multidisciplinary physiotherapy-podiatry clinic for PWH with a history of ankle bleeds, pain, foot and/or ankle deformities appears to increase patient satisfaction. We did not observe a significant change in ankle AJBR or ankle HJHS scores, suggesting they might not be sufficient to evaluate potential benefits to patients. A larger study incorporating validated tools, focusing on patient-reported foot function, pain, activity and quality of life is needed to confirm if there is any effect of a combined physiotherapy-podiatry intervention on ankle joint AJBR and function.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"29 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125065107","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Simon Fletcher, S. Chaplin, C. Harrison, K. Juusola, N. Collins
Abstract Background: Guidance from the European Association for Haemophilia and Allied Disorders (EAHAD) sets out the educational milestones haemophilia nurses should aim to achieve. However, little is known about the resources nurses use for education and current awareness. Aims: To assess the current educational level of haemophilia nurses, how and where they access ongoing education, where they feel they need extra support, and how best this teaching could be delivered. Methods: Haemophilia nurses in the Haemnet Horizons group devised and piloted a questionnaire. This was distributed in hard copy to nurses attending the 2019 EAHAD Congress and promoted as an online survey hosted by Survey Monkey. Results: Seventy-five replies were received from nurses in Europe (46 in the UK), and two from nurses in Chile and the Philippines. Most described their role as ‘specialist nurse’, with the majority having worked in haemophilia care for up to ten years. Half had a nursing degree and one quarter had a nursing diploma. Three quarters had attended at least one course specifically related to haemophilia nursing. Almost all used academic sources, study days and the websites of health profession organisations as information sources. Most also used Google or Wikipedia, but fewer used Twitter. Patient association websites were more popular among non-UK nurses. About half attended sponsored professional meetings and three quarters reported that educational meetings were available in their workplace. A clear majority preferred interactive and face-to-face activities using patient-focused content. Conclusions: The study shows that nurses, predominantly in Western Europe, access a range of educational resources, most of which are ‘traditional’. Use of online sources is high, but social media are less popular than Google or Wikipedia. Further research is needed to explore the potential of new media for haemophilia nurse education, and whether the current educational levels and needs highlighted in the survey remains the same across the whole of Europe.
{"title":"Professional education among haemophilia nurses: a survey of current practices","authors":"Simon Fletcher, S. Chaplin, C. Harrison, K. Juusola, N. Collins","doi":"10.17225/JHP00150","DOIUrl":"https://doi.org/10.17225/JHP00150","url":null,"abstract":"Abstract Background: Guidance from the European Association for Haemophilia and Allied Disorders (EAHAD) sets out the educational milestones haemophilia nurses should aim to achieve. However, little is known about the resources nurses use for education and current awareness. Aims: To assess the current educational level of haemophilia nurses, how and where they access ongoing education, where they feel they need extra support, and how best this teaching could be delivered. Methods: Haemophilia nurses in the Haemnet Horizons group devised and piloted a questionnaire. This was distributed in hard copy to nurses attending the 2019 EAHAD Congress and promoted as an online survey hosted by Survey Monkey. Results: Seventy-five replies were received from nurses in Europe (46 in the UK), and two from nurses in Chile and the Philippines. Most described their role as ‘specialist nurse’, with the majority having worked in haemophilia care for up to ten years. Half had a nursing degree and one quarter had a nursing diploma. Three quarters had attended at least one course specifically related to haemophilia nursing. Almost all used academic sources, study days and the websites of health profession organisations as information sources. Most also used Google or Wikipedia, but fewer used Twitter. Patient association websites were more popular among non-UK nurses. About half attended sponsored professional meetings and three quarters reported that educational meetings were available in their workplace. A clear majority preferred interactive and face-to-face activities using patient-focused content. Conclusions: The study shows that nurses, predominantly in Western Europe, access a range of educational resources, most of which are ‘traditional’. Use of online sources is high, but social media are less popular than Google or Wikipedia. Further research is needed to explore the potential of new media for haemophilia nurse education, and whether the current educational levels and needs highlighted in the survey remains the same across the whole of Europe.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"207 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2020-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121031293","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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