Rare Disease Report

Immune Thrombocytopenia Survey Reveals Negative Impact of Disease on Quality of Life

JUNE 15, 2018
Krista Rossi
Interim results from a survey conducted by Novartis, referred to as I-WISh, reveal high, negative impacts of the rare blood disorder, immune thrombocytopenia (ITP), on patients’ quality of life.

Updated results from the collaborative survey completed among global ITP experts, patient groups, and Novartis, sought to decipher ITP’s impact on daily life along with patients' attitudes toward disease treatment and management. The cross-sectional survey assessed 1,400 patients with ITP and 480 health care providers who treat the condition from 14 countries.
 
The interim survey results were presented at the 23rd Congress of the European Hematology Association (EHA) in Stockholm, Sweden (Abstract #PF654). They included the online questionnaire that commenced in January 2018 to measure ITP-related symptoms, the impact of the condition on daily life, and patient perceptions regarding treatment and management of their condition.

"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," stated Samit Hirawat, MD, head of Novartis Oncology Global Drug Development, in a recent statement.

"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,” he added. “These are important insights, and we will look to build them into the programs and services we develop to better support this community."

Clinical experts originally developed the ITP Life Quality Index (ILQI) on the basis of patient interviews that were conducted to provide confirmed evidence of content validity specifically pertaining to the concepts’ relevance. Prior to the interviews, a literature search was performed in order to ensure that the ILQI captured relevant concepts.

The ILQI was further developed by the I-WISh Steering Committee into a 10-question tool to assist in quantifying and monitoring the quality of life impact of ITP on patients. The ILQI was validated in qualitative analyses prior to use in the I-WISh survey; it will permit clinicians to more effectively track symptoms beyond bleeding. It will also allow physicians to rely on more than platelet counts when treating patients with ITP.

According to the results, which assessed over 1,300 ITP patients, more than one-third (36%) reported high impacts on emotional wellbeing as a result of ITP, and 28% reported missed work due to ITP symptoms. Additionally, 71%, or two-thirds of the survey population, reported fatigue as the most severe symptom at diagnosis, and 64% reported fatigue at survey completion.

"Severe fatigue, in particular, was reported by many patients as the most difficult to manage symptom of ITP," commented 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."

Achieving healthy blood counts (79%) and increasing energy levels (55%) were the 2 main treatment goals reported by patients overall.

"Some patients only realize their fatigue has become such an issue in their daily lives after it is corrected by treatment," Dr Cooper added. "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."

Novartis has launched the #ITP3Wishes social media campaign in order to raise ITP awareness and express the hopes and dreams of ITP patients and their supporters. Through the use of social media channels, the campaign encourages ITP patients to share 3 ITP-related wishes with the #ITP3Wishes hashtag in an effort inspire others and exercise their voices. 

Later this year, additional survey results will be posted.

 

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