Penny wise, pound foolish: an assessment of Canadian Hemophilia/inherited bleeding disorder comprehensive care program services and resources

Page, David; Crymble, S.; Lawday, K.; Long, Michael J.; Stoffman, Jayson; Waterhouse, Linda; Wilton, Pam

doi:10.1111/hae.12913

Cited by 9 publications

(11 citation statements)

References 3 publications

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“…Interestingly, while a Delphi survey of healthcare providers and patients/parents with juvenile idiopathic arthritis (JIA) established that addressing psychosocial, educational and vocational needs constitute best practice and are deemed highly feasible in most centres in the United Kingdom, our survey revealed high importance but low feasibility in the Canadian HTC . This is echoed by a recent audit by the CHS that identified serious human resource deficiencies in most Canadian HTCs, especially physiotherapists and social workers . Similar to our survey results, the UK Delphi study also revealed limited feasibility of transitional care being provided by professionals who are knowledgeable about adolescent development …”

Section: Discussionsupporting

confidence: 77%

“…United Kingdom, our survey revealed high importance but low feasibility in the Canadian HTC. 17 This is echoed by a recent audit by the CHS that identified serious human resource deficiencies in most Canadian HTCs, especially physiotherapists and social workers 18. Similar to our survey results, the UK Delphi study also revealed limited feasibility of transitional care being provided by professionals who are knowledgeable about adolescent development 17.…”

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confidence: 81%

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Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers

et al. 2019

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Introduction It is unclear which outcome indicators should be used to measure the success of haemophilia transition programs, and what are key elements of a haemophilia transition program to ensure success. Aim To establish by expert consensus a list of important and feasible outcome indicators of successful haemophilia transition, and a list of key elements of transition planning. Methods A modified two‐stage Delphi survey was developed and disseminated among a panel of Canadian interdisciplinary haemophilia care providers. Participants were asked to rate the importance and feasibility of outcome indicators of effective haemophilia transition and elements of haemophilia transition program. In the second round, participants were asked to choose the top five outcomes suitable for inclusion in a core outcome set of transition effectiveness, and the top five elements that are important and feasible for implementation within the next 5 years. Results In total, 34/73 (47%) of participants completed the first round and 33 completed the second round, representing a variety of disciplines. Top outcome indicators recommended for a core outcome set include measurement of adherence, change in bleeding rate, self‐efficacy skills, haemophilia knowledge, patient and caregiver satisfaction, time gap between last paediatric and first adult clinic, and number of emergency room or hospital admissions. Fourteen elements of transition achieved consensus in importance ratings, while eight were felt to be feasible for implementation within next 5 years. Conclusions Results will contribute towards the development of a haemophilia transition outcome instrument and provide guidance for future studies of the effectiveness of transition programs.

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Section: Discussionsupporting

confidence: 77%

supporting

confidence: 81%

Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers

et al. 2019

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“…Differing healthcare reimbursement systems, budgetary constraints, and geographical and cultural factors, make it difficult for any country to fully deliver ideal care. Some regions, mainly developed countries, may have sufficient treatment product available but then have a higher expectation of outcomes and often insufficient supportive care experience and personnel to monitor adherence and outcomes and implement regular follow-up [8]. In contrast, developing regions may not have ready access to factor replacement but have developed excellent physiotherapy and rehabilitation programs.…”

Section: Coagulation Disorders;mentioning

confidence: 99%

Common themes and challenges in hemophilia care: a multinational perspective

et al. 2018

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AHCDC: Association of Hemophilia Clinic Directors of Canada; AICE: Italian Association of Hemophilia Centres; ATHN: American Thrombosis and Hemostasis Network; EAHAD: European Association for Haemophilia and Allied Disorders; EHC: European Hemophilia Consortium; FIX: Coagulation Factor IX; FVIII: Coagulation Factor VIII; HAL: Haemophilia Activity List; HJHS: Haemophilia Joint Health Score; HTC: Hemophilia Treatment Centre; HTCCNC: Hemophilia Treatment Centre Collaborative Network of China; MASAC: Medical and Scientific Advisory Council; MDT: Multidisciplinary team; NHD: National Haemophilia Database; NHF: National Hemophilia Foundation; PK: Pharmacokinetics; POCUS: Point of care ultrasound; PWH: People with haemophilia; SHIELD: Supporting Hemophilia through International Education, Learning and Development; WFH: World Federation of Hemophilia.

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“…Coagulation disorders include many chronic conditions that require life‐long treatments to reduce risk of hemorrhage (bleeding disorders) or of blood clotting. A multidisciplinary, approach to patients with bleeding and clotting disorders has been shown to improve clinical outcomes, decrease mortality rates, and improve cost‐effectiveness in health care settings . Nurses play a crucial role as part of the multidisciplinary team providing care to these patients.…”

Section: Introductionmentioning

confidence: 99%

“…A multidisciplinary, approach to patients with bleeding and clotting disorders has been shown to improve clinical outcomes, decrease mortality rates, and improve costeffectiveness in health care settings. [1][2][3] Nurses play a crucial role as part of the multidisciplinary team providing care to these patients.…”

Section: Introductionmentioning

confidence: 99%

Education needs of nurses in thrombosis and hemostasis: An international, mixed‐methods study

Lazure

Munn

Labbé

et al. 2019

Research and Practice in Thrombosis and Haemostasis

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BackgroundThe need for a more integrated, multidisciplinary approach to care for individuals with bleeding or clotting disorders has been highlighted in recent years. Evidence‐based education adapted to nurses’ needs is essential for a successful evolution. However, limited data currently exist on the clinical challenges nurses face in this specialty area.ObjectivesIdentify barriers and challenges faced by specialty nurses, and determine possible causes, to develop appropriate educational interventions.MethodsA mixed‐methods study, combining qualitative (semi‐structured interviews) and quantitative (online survey) data was conducted on the challenges experienced by hemostasis nurses in nine countries (Argentina, Australia, Canada, China, France, Germany, Spain, the UK, and the US), and deployed in five languages (English, French, German, Mandarin, and Spanish). Qualitative data were analyzed using thematic analysis. Quantitative data were analyzed using frequency tables, chi‐squares and standard deviations.ResultsParticipants (n = 234) included nurses (n = 212; n = 22 qualitative; n = 190 quantitative); and patients receiving care for bleeding or clotting conditions or their caretakers (n = 22 qualitative phase only). Through triangulated data analysis, six challenging areas emerged: (a) Understanding of von Willebrand disease (VWD); (b) Anticoagulant safety profile in specific patients; (c) Understanding the treatment of patients with inhibitors; (d) Patient risk assessments; (e) Individualization of care and communication with patients; and (f) Accessing and implementing relevant professional education.ConclusionsThis needs assessment provides a comprehensive illustration of the current challenges faced by nurses in the field of bleeding and clotting disorders, and indicates where gaps in skills, knowledge or confidence would benefit from nurse‐specific educational programming.

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Penny wise, pound foolish: an assessment of Canadian Hemophilia/inherited bleeding disorder comprehensive care program services and resources

Abstract: Under-funding of programmes and suboptimal monitoring of valuable clotting factor concentrate utilization and reporting are both 'penny-wise' and 'pound-foolish'. A formal accreditation process is needed.

Cited by 9 publications

References 3 publications

Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers

Outcomes indicators and processes in transitional care in adolescents with haemophilia: A Delphi survey of Canadian haemophilia care providers

Common themes and challenges in hemophilia care: a multinational perspective

Education needs of nurses in thrombosis and hemostasis: An international, mixed‐methods study

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