USE OF PRE-RECORDED AUDIO-VISUAL INFORMATION FOR PATIENTS DIAGNOSED WITH SIX COMMON MALIGNANT HAEMATOLOGICAL DISORDERS WITH AN AIM TO IMPROVE PATIENT EXPERIENCE AND FACILITATE BREAKING BAD NEWS
(Abstract release date: 05/19/16)
EHA Library. Ahmad H. 06/09/16; 132997; E1448
Dr. Humayun Ahmad
Contributions
Contributions
Abstract
Abstract: E1448
Type: Eposter Presentation
Background
The diagnosis of a haematological malignancy can be overwhelming for patients. Shock and fright are common initial patient responses to bad news and may prevent patients from fully understanding important information given to them during the consultation. Use of printed information can be helpful but often these may be too detailed for patients to extract the key information from these in a timely manner. The plan for treatment requires shared decision making with the patient which in turn depends on patient understanding the key facts about the diagnosis and the treatment approaches. Although this key information is provided during consultation, the patient may have difficulty remembering these facts due to reasons noted above. This hurdle can potentially be overcome with the use of pre-recorded audio-visual patient information materials which can help patients to recall and also share key information with their loved ones. We report here on our innovative project to produce pre-recorded audio-visual information for patients about six common haematological malignancies.
Aims
We applied for and secured a grant from a charity for a two year project to develop and produce professionally recorded short films for patient information about six common haematological malignancies. The conditions chosen were: Chronic Lymphocytic Leukaemia, Chronic Myeloid Leukaemia, High grade Lymphoma, Low grade Lymphoma, Myeloma and Hodgkin’s disease.
Methods
We started by consulting and seeking guidance from numerous patients with these conditions. We also spoke and took advice from experienced health professionals working with haemato-oncology patients. Based on the wisdom gathered we compiled the key evidence based facts about each of these diseases and their management. Details on specific treatment regimen were not included and the importance of building a partnership with the treating team was emphasized as the source of specific detail about planned therapy. These key evidence based facts were then converted into lay language which became the written scripts for each short film. A 10-15 minute short film was recorded for each of six diseases with the help of a professional team specialising in creating educational films. A clip about the role of specialist nurses was also recorded. We also included additional voice recordings of real patients talking about their experience with the same diagnosis / disease.
Results
The result of this two year project was a professionally produced DVD for each of the six diseases. The patient information films have been recorded in English language with possibility of translation /transliteration as sub-titles. As a proof of concepts each DVD short film has been translated to Polish language subtitles using this method. The copies of the DVDs can be produced at fairly low cost to be given out to patients. However, keeping with current trends, most patients are able to use web based information technology quite easily. In view of this we have expanded the project by developing a dedicated website (www.patientmedianetwork.com) to make these audio-visual materials available online to make it easy to access them without the need for DVD players etc. Also by making it freely available on the web, it shall serve patients beyond our geographic boundaries as anyone can access this patient information resource online now.
Conclusion
Pre-recorded, purposeful and specific audio-visual information can not only provide key facts about the diagnosis and its management but can also be used to create hope. It can be a resource to improve recall of important information as the patient and family can listen to it again and again after the initial visit to the clinic. And better understanding of their disease helps with patient participation in shared decision making which enhances their subsequent adaptation to the illness and its experience. Most importantly aim of this work is to reduces human suffering associated with diagnosis of these haematological malignancies and help optimize patient adjustment to the journey ahead. Our work also illustrates the importance of informatics and technology to improve patient-centeredness and we are keen to share our innovative work and ideas with the wider professional community.
Session topic: E-poster
Keyword(s): Chronic lymphocytic leukemia, Chronic myeloid leukemia, Lymphoma, Myeloma
Type: Eposter Presentation
Background
The diagnosis of a haematological malignancy can be overwhelming for patients. Shock and fright are common initial patient responses to bad news and may prevent patients from fully understanding important information given to them during the consultation. Use of printed information can be helpful but often these may be too detailed for patients to extract the key information from these in a timely manner. The plan for treatment requires shared decision making with the patient which in turn depends on patient understanding the key facts about the diagnosis and the treatment approaches. Although this key information is provided during consultation, the patient may have difficulty remembering these facts due to reasons noted above. This hurdle can potentially be overcome with the use of pre-recorded audio-visual patient information materials which can help patients to recall and also share key information with their loved ones. We report here on our innovative project to produce pre-recorded audio-visual information for patients about six common haematological malignancies.
Aims
We applied for and secured a grant from a charity for a two year project to develop and produce professionally recorded short films for patient information about six common haematological malignancies. The conditions chosen were: Chronic Lymphocytic Leukaemia, Chronic Myeloid Leukaemia, High grade Lymphoma, Low grade Lymphoma, Myeloma and Hodgkin’s disease.
Methods
We started by consulting and seeking guidance from numerous patients with these conditions. We also spoke and took advice from experienced health professionals working with haemato-oncology patients. Based on the wisdom gathered we compiled the key evidence based facts about each of these diseases and their management. Details on specific treatment regimen were not included and the importance of building a partnership with the treating team was emphasized as the source of specific detail about planned therapy. These key evidence based facts were then converted into lay language which became the written scripts for each short film. A 10-15 minute short film was recorded for each of six diseases with the help of a professional team specialising in creating educational films. A clip about the role of specialist nurses was also recorded. We also included additional voice recordings of real patients talking about their experience with the same diagnosis / disease.
Results
The result of this two year project was a professionally produced DVD for each of the six diseases. The patient information films have been recorded in English language with possibility of translation /transliteration as sub-titles. As a proof of concepts each DVD short film has been translated to Polish language subtitles using this method. The copies of the DVDs can be produced at fairly low cost to be given out to patients. However, keeping with current trends, most patients are able to use web based information technology quite easily. In view of this we have expanded the project by developing a dedicated website (www.patientmedianetwork.com) to make these audio-visual materials available online to make it easy to access them without the need for DVD players etc. Also by making it freely available on the web, it shall serve patients beyond our geographic boundaries as anyone can access this patient information resource online now.
Conclusion
Pre-recorded, purposeful and specific audio-visual information can not only provide key facts about the diagnosis and its management but can also be used to create hope. It can be a resource to improve recall of important information as the patient and family can listen to it again and again after the initial visit to the clinic. And better understanding of their disease helps with patient participation in shared decision making which enhances their subsequent adaptation to the illness and its experience. Most importantly aim of this work is to reduces human suffering associated with diagnosis of these haematological malignancies and help optimize patient adjustment to the journey ahead. Our work also illustrates the importance of informatics and technology to improve patient-centeredness and we are keen to share our innovative work and ideas with the wider professional community.
Session topic: E-poster
Keyword(s): Chronic lymphocytic leukemia, Chronic myeloid leukemia, Lymphoma, Myeloma
Abstract: E1448
Type: Eposter Presentation
Background
The diagnosis of a haematological malignancy can be overwhelming for patients. Shock and fright are common initial patient responses to bad news and may prevent patients from fully understanding important information given to them during the consultation. Use of printed information can be helpful but often these may be too detailed for patients to extract the key information from these in a timely manner. The plan for treatment requires shared decision making with the patient which in turn depends on patient understanding the key facts about the diagnosis and the treatment approaches. Although this key information is provided during consultation, the patient may have difficulty remembering these facts due to reasons noted above. This hurdle can potentially be overcome with the use of pre-recorded audio-visual patient information materials which can help patients to recall and also share key information with their loved ones. We report here on our innovative project to produce pre-recorded audio-visual information for patients about six common haematological malignancies.
Aims
We applied for and secured a grant from a charity for a two year project to develop and produce professionally recorded short films for patient information about six common haematological malignancies. The conditions chosen were: Chronic Lymphocytic Leukaemia, Chronic Myeloid Leukaemia, High grade Lymphoma, Low grade Lymphoma, Myeloma and Hodgkin’s disease.
Methods
We started by consulting and seeking guidance from numerous patients with these conditions. We also spoke and took advice from experienced health professionals working with haemato-oncology patients. Based on the wisdom gathered we compiled the key evidence based facts about each of these diseases and their management. Details on specific treatment regimen were not included and the importance of building a partnership with the treating team was emphasized as the source of specific detail about planned therapy. These key evidence based facts were then converted into lay language which became the written scripts for each short film. A 10-15 minute short film was recorded for each of six diseases with the help of a professional team specialising in creating educational films. A clip about the role of specialist nurses was also recorded. We also included additional voice recordings of real patients talking about their experience with the same diagnosis / disease.
Results
The result of this two year project was a professionally produced DVD for each of the six diseases. The patient information films have been recorded in English language with possibility of translation /transliteration as sub-titles. As a proof of concepts each DVD short film has been translated to Polish language subtitles using this method. The copies of the DVDs can be produced at fairly low cost to be given out to patients. However, keeping with current trends, most patients are able to use web based information technology quite easily. In view of this we have expanded the project by developing a dedicated website (www.patientmedianetwork.com) to make these audio-visual materials available online to make it easy to access them without the need for DVD players etc. Also by making it freely available on the web, it shall serve patients beyond our geographic boundaries as anyone can access this patient information resource online now.
Conclusion
Pre-recorded, purposeful and specific audio-visual information can not only provide key facts about the diagnosis and its management but can also be used to create hope. It can be a resource to improve recall of important information as the patient and family can listen to it again and again after the initial visit to the clinic. And better understanding of their disease helps with patient participation in shared decision making which enhances their subsequent adaptation to the illness and its experience. Most importantly aim of this work is to reduces human suffering associated with diagnosis of these haematological malignancies and help optimize patient adjustment to the journey ahead. Our work also illustrates the importance of informatics and technology to improve patient-centeredness and we are keen to share our innovative work and ideas with the wider professional community.
Session topic: E-poster
Keyword(s): Chronic lymphocytic leukemia, Chronic myeloid leukemia, Lymphoma, Myeloma
Type: Eposter Presentation
Background
The diagnosis of a haematological malignancy can be overwhelming for patients. Shock and fright are common initial patient responses to bad news and may prevent patients from fully understanding important information given to them during the consultation. Use of printed information can be helpful but often these may be too detailed for patients to extract the key information from these in a timely manner. The plan for treatment requires shared decision making with the patient which in turn depends on patient understanding the key facts about the diagnosis and the treatment approaches. Although this key information is provided during consultation, the patient may have difficulty remembering these facts due to reasons noted above. This hurdle can potentially be overcome with the use of pre-recorded audio-visual patient information materials which can help patients to recall and also share key information with their loved ones. We report here on our innovative project to produce pre-recorded audio-visual information for patients about six common haematological malignancies.
Aims
We applied for and secured a grant from a charity for a two year project to develop and produce professionally recorded short films for patient information about six common haematological malignancies. The conditions chosen were: Chronic Lymphocytic Leukaemia, Chronic Myeloid Leukaemia, High grade Lymphoma, Low grade Lymphoma, Myeloma and Hodgkin’s disease.
Methods
We started by consulting and seeking guidance from numerous patients with these conditions. We also spoke and took advice from experienced health professionals working with haemato-oncology patients. Based on the wisdom gathered we compiled the key evidence based facts about each of these diseases and their management. Details on specific treatment regimen were not included and the importance of building a partnership with the treating team was emphasized as the source of specific detail about planned therapy. These key evidence based facts were then converted into lay language which became the written scripts for each short film. A 10-15 minute short film was recorded for each of six diseases with the help of a professional team specialising in creating educational films. A clip about the role of specialist nurses was also recorded. We also included additional voice recordings of real patients talking about their experience with the same diagnosis / disease.
Results
The result of this two year project was a professionally produced DVD for each of the six diseases. The patient information films have been recorded in English language with possibility of translation /transliteration as sub-titles. As a proof of concepts each DVD short film has been translated to Polish language subtitles using this method. The copies of the DVDs can be produced at fairly low cost to be given out to patients. However, keeping with current trends, most patients are able to use web based information technology quite easily. In view of this we have expanded the project by developing a dedicated website (www.patientmedianetwork.com) to make these audio-visual materials available online to make it easy to access them without the need for DVD players etc. Also by making it freely available on the web, it shall serve patients beyond our geographic boundaries as anyone can access this patient information resource online now.
Conclusion
Pre-recorded, purposeful and specific audio-visual information can not only provide key facts about the diagnosis and its management but can also be used to create hope. It can be a resource to improve recall of important information as the patient and family can listen to it again and again after the initial visit to the clinic. And better understanding of their disease helps with patient participation in shared decision making which enhances their subsequent adaptation to the illness and its experience. Most importantly aim of this work is to reduces human suffering associated with diagnosis of these haematological malignancies and help optimize patient adjustment to the journey ahead. Our work also illustrates the importance of informatics and technology to improve patient-centeredness and we are keen to share our innovative work and ideas with the wider professional community.
Session topic: E-poster
Keyword(s): Chronic lymphocytic leukemia, Chronic myeloid leukemia, Lymphoma, Myeloma
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