EAST HANOVER, N.J.,
June 15, 2018 /PRNewswire/
-- Many patients with the rare blood disorder immune
thrombocytopenia (ITP) find the disease has a negative impact on
their everyday quality of life, according to interim results of a
Novartis survey, called I-WISh, presented today at the
23rd Congress of the European Hematology Association
(EHA) in Stockholm, Sweden
(Abstract #PF654).
I-WISh, a collaboration among global ITP experts, patient groups
and Novartis, aims to uncover the impact of the disease on daily
life, and patients' perceptions toward treatment and management of
their condition.
Interim survey results from more than 1,300 ITP patients
revealed that they have concerns about the impact of ITP on their
quality of life. Results showed that more than one-third (36%) of
patients said that having ITP had a high impact on their emotional
well-being while 28% of patients had disease symptoms that caused
them to miss work. About two-thirds of patients reported that
fatigue was their most severe symptom at diagnosis (71%) and at
survey completion (64%).
"Severe fatigue, in particular, was reported by many patients as
the most difficult to manage symptom of ITP," said Nichola Cooper, MD, clinical senior lecturer,
Hammersmith Hospital, Imperial College London, London, United Kingdom, and Chair of the
I-WISh Steering Committee. "This is an important message for
healthcare providers treating patients with this rare disease; ITP
is about more than bruising and risk of bleeding."
The I-WISh Steering Committee developed the ITP Life Quality
Index (ILQI), a ten-question tool designed to help quantify and
monitor the quality of life impact of ITP on patients. The ILQI was
validated in qualitative analyses prior to being unveiled in the
I-WISh survey and will allow clinicians to better monitor symptoms
beyond bleeding and to rely on more than platelet counts when
treating ITP patients1.
"Some patients only realize their fatigue has become such an
issue in their daily lives after it is corrected by treatment,"
said Dr. Cooper. "The ILQI tool will help measure this correction
more accurately and could also play a crucial role in monitoring
disease impact on quality of life beyond just relying on the
platelet count alone."
Overall, the two main treatment goals reported by patients were
achieving healthy blood counts (79%) and increasing their energy
levels (55%).
"These initial data from the I-WISh survey reveal how a rare
blood disease like ITP can significantly affect a patient's ability
to live and function in their day-to-day life," said Samit Hirawat, MD, Head, Novartis Oncology
Global Drug Development. "We believe these results demonstrate
that, even beyond medicine, ITP patients are seeking compassion,
support and understanding from family, friends so they can strive
to live the best lives they can. These are important insights, and
we will look to build them into the programs and services we
develop to better support this community."
To raise awareness about ITP, Novartis has launched the
#ITP3Wishes social media campaign to give voice to the hopes and
dreams of patients and those who support them. The campaign
encourages people to use their social media channels to share three
ITP-related wishes with the #ITP3Wishes hashtag to inspire others
and let their ITP voice be heard.
About the ITP World Impact Survey (I-WISh)
The
international I-WISh survey is a cross-sectional survey of 1,400
patients with ITP and 480 healthcare providers who treat the
condition from 14 countries (Canada, China, Colombia, Egypt, France, Germany, Italy, India,
Japan, Norway, Spain, Turkey, United
Kingdom and United States).
The interim results were from more than 1,300 patients in 13
countries who completed an online questionnaire beginning in
January 2018 to measure ITP-related
symptoms and the impact of the condition on daily life, and
patients' perceptions toward treatment and management of their
condition. Additional survey results will be presented later this
year.
About the ITP Life Quality Index (ILQI)1
The ITP Life Quality Index (ILQI) was originally developed by
clinical experts and based on patient interviews that were
conducted to provide evidence to confirm content validity,
specifically regarding the relevance of concepts. A literature
search was performed prior to the interviews to ensure the ILQI
captured relevant concepts.
Fifteen semi-structured patient interviews were conducted with
UK patients with ITP recruited via the UK ITP Support Association.
Patients were asked open-ended questions to elicit spontaneous
discussion of their experience, followed by questions that probed
the concepts of interest. The interviews also involved cognitive
debriefing of the ILQI using 'think-aloud' methods to assess
understanding and relevance of items, instructions and response
options. Verbatim transcripts were analyzed using thematic analysis
techniques.
Patients were 67% female, had a mean age of 51.3 (SD=17.4, range
23-73) and a range of education levels. Qualitative analysis
identified a variety of impacts associated with ITP, including
fatigue (93%), emotional impacts (e.g., anxiety [80%]), impacts on
daily living such as lack of ability to partake in sport (100%),
impacts on work (e.g., absenteeism [40%]), financial impacts (e.g.,
working hours [40%]) and social impacts (e.g., relationship with
family [60%]).
About Immune Thrombocytopenia (ITP)
Immune
thrombocytopenia (ITP) is a rare and potentially serious blood
disorder that is characterized by increased destruction and
impaired production of platelets, which are blood cells that allow
the blood to clot properly2. People who have ITP often
have purple bruises or tiny red or purple dots on the
skin3. They also display symptoms such as nosebleeds,
bleeding from the gums during dental work, or other bleeding that
is hard to stop2. The potential for drops in platelet
counts may also cause emotional distress and may result in a
hindered ability to do work or embarrassment due to visible
symptoms3.
Immune thrombocytopenia is classified by duration from diagnosis
into: newly diagnosed (0-3 months), persistent (3-12 months
duration) and chronic (>12 months duration). Chronic ITP is more
likely to occur in adults, and women are affected more often than
men2.
The goal of treatment in ITP is to maintain a safe platelet
count that reduces the risk of bleeding. Treatment is determined by
platelet levels and the severity of the symptoms. In most cases,
drugs that alter the immune system's attack on the platelets are
prescribed to help manage bleeding in adults.
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About Novartis
Located in East Hanover, NJ Novartis Pharmaceuticals
Corporation is an affiliate of Novartis which provides innovative
healthcare solutions that address the evolving needs of patients
and societies. Headquartered in Basel,
Switzerland, Novartis offers a diversified portfolio to best
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References
- Grant L, et al. Qualitative research to support the content
validity of the Immune Thrombocytopenia (ITP) Life Quality Index
(ILQI). The British Society of Haematology. 2018. Abstract
BSH18-482.
- National Heart, Lung and Blood Institute (2018). Immune
Thrombocytopenia. Available at
https://www.nhlbi.nih.gov/health-topics/immune-thrombocytopenia.
Accessed March 14, 2018.
- Mathias S, et al. "Impact of Chronic Immune Thrombocytopenic
Purpura (ITP) on health-related quality of life: a conceptual model
starting with the patient perspective." Health and quality of
life outcomes 6.1(2008):1.
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SOURCE Novartis Pharmaceuticals Corporation