Gamble A1,2, Clark K1, Flores AM3, Mahmood Mohammed M4, Tawfeeq Abbas N4, Abdulwahab Hassan M4, Yousif Jaafar A4
1Boston Biopharma, Corporate and Social Responsibility, Alpharetta, United States, 2Side by Side Global, Sulaymaniyah, Iraq, 3Northwestern University, Feinberg School of Medicine, Department of Physical Therapy and Human Movement Sciences, Chicago, United States, 4Hiwa Cancer and Hematology Hospital, Kurdistan Region, Iraq
Background: In countries, like the Kurdistan region of Iraq (Kurdistan), where factor replacement therapy is not consistently available for persons with hemophilia, rehabilitation is essential in preventing disability. At a regional government hospital, there was interest in developing a comprehensive, multidisciplinary, and evidence-based rehabilitation treatment service for persons with hemophilia.
Purpose: This case report describes a capacity building initiative at a regional government hospital in Kurdistan that
1) assessed the gaps in clinical skills and patient care needs for persons with hemophilia and
2) developed contextually appropriate training materials and patient care delivery model.
Methods: The initiative included the following steps:
1. Identification of seminal literature informing the treatment of persons with hemophilia, with an emphasis on multidisciplinary rehabilitation in low-resource contexts.
2. Meetings with key stakeholders including clinical staff, hospital leadership, Ministry of Health leadership, and patient representatives.
3. Identification of clinical topics requiring multidisciplinary and discipline-specific didactic and practical skills training.
4. Development and delivery of training materials and training plan including pre- and post-tests.
5. Development of a culturally sensitive and context specific patient care delivery model.
Results: Meetings with key stakeholders revealed that
1) 162 children and adults with hemophilia and similar bleeding disorders registered at the hospital had not been assessed and treated per evidence-based recommendations;
2) the hospital's physiotherapists did not have the clinical skills to address this gap. Multidisciplinary didactic training materials were developed to increase knowledge of pathophysiology and the role of rehabilitation for this patient population. Physiotherapy practical skills training materials and competency evaluations were developed with an emphasis on the administration of the Hemophilia Joint Health Score (HJHS). The patient care delivery model included the following:
1) group treatment manual with patient education resources aimed to enhance self-management skills,
2) electronic patient database and
3) program delivery mode.
All training and patient care materials were translated into the native Kurdish language, including select patient outcome measures undergoing back translation procedures. Seventeen staff, including nurses and physiotherapists, participated in 15 hours of didactic training. Average pre-test knowledge was 40.27% and average post-test knowledge was 89.50%, reflecting an increase of nearly 50%. Six physiotherapists participated in 15 hours of practical skills training. Three of the physiotherapists demonstrated competence in implementing the group treatment service model, administering the HJHS, and providing tailored patient education while the remaining three will participate in individualized professional development plans to achieve competence.
Conclusion(s): A culturally and contextually relevant capacity building program and multidisciplinary patient care delivery model for persons with hemophilia was developed. It was successfully delivered in a low-resource context, with improvements in clinical knowledge and skills. The next step was to demonstrate feasibility of the model and to develop a plan to ensure sustainability and quality improvement.
Implications: The process described in this case report may be useful in other low-resource contexts to assess needs and subsequently develop culturally and contextually relevant rehabilitation services that promote the self-management of hemophilia, and possibly other chronic conditions, with the aim of reducing the burden of disability globally.
Keywords: hemophilia, capacity building, low-resource
Funding acknowledgements: The project was funded by the Corporate and Social Responsibility Division of Boston Biopharma, USA.
Purpose: This case report describes a capacity building initiative at a regional government hospital in Kurdistan that
1) assessed the gaps in clinical skills and patient care needs for persons with hemophilia and
2) developed contextually appropriate training materials and patient care delivery model.
Methods: The initiative included the following steps:
1. Identification of seminal literature informing the treatment of persons with hemophilia, with an emphasis on multidisciplinary rehabilitation in low-resource contexts.
2. Meetings with key stakeholders including clinical staff, hospital leadership, Ministry of Health leadership, and patient representatives.
3. Identification of clinical topics requiring multidisciplinary and discipline-specific didactic and practical skills training.
4. Development and delivery of training materials and training plan including pre- and post-tests.
5. Development of a culturally sensitive and context specific patient care delivery model.
Results: Meetings with key stakeholders revealed that
1) 162 children and adults with hemophilia and similar bleeding disorders registered at the hospital had not been assessed and treated per evidence-based recommendations;
2) the hospital's physiotherapists did not have the clinical skills to address this gap. Multidisciplinary didactic training materials were developed to increase knowledge of pathophysiology and the role of rehabilitation for this patient population. Physiotherapy practical skills training materials and competency evaluations were developed with an emphasis on the administration of the Hemophilia Joint Health Score (HJHS). The patient care delivery model included the following:
1) group treatment manual with patient education resources aimed to enhance self-management skills,
2) electronic patient database and
3) program delivery mode.
All training and patient care materials were translated into the native Kurdish language, including select patient outcome measures undergoing back translation procedures. Seventeen staff, including nurses and physiotherapists, participated in 15 hours of didactic training. Average pre-test knowledge was 40.27% and average post-test knowledge was 89.50%, reflecting an increase of nearly 50%. Six physiotherapists participated in 15 hours of practical skills training. Three of the physiotherapists demonstrated competence in implementing the group treatment service model, administering the HJHS, and providing tailored patient education while the remaining three will participate in individualized professional development plans to achieve competence.
Conclusion(s): A culturally and contextually relevant capacity building program and multidisciplinary patient care delivery model for persons with hemophilia was developed. It was successfully delivered in a low-resource context, with improvements in clinical knowledge and skills. The next step was to demonstrate feasibility of the model and to develop a plan to ensure sustainability and quality improvement.
Implications: The process described in this case report may be useful in other low-resource contexts to assess needs and subsequently develop culturally and contextually relevant rehabilitation services that promote the self-management of hemophilia, and possibly other chronic conditions, with the aim of reducing the burden of disability globally.
Keywords: hemophilia, capacity building, low-resource
Funding acknowledgements: The project was funded by the Corporate and Social Responsibility Division of Boston Biopharma, USA.
Topic: Disability & rehabilitation; Globalisation: health systems, policies & strategies; Disability & rehabilitation
Ethics approval required: Yes
Institution: Kurdistan Regional Government/IRAQ, Ministry of Health, Sulaimany Health Director
Ethics committee: Hiwa Cancer Hospital Ethics Board Committee
Ethics number: 29818
All authors, affiliations and abstracts have been published as submitted.
