In-Clinic Management, Disease Discussion and Impact on Patient Perception Regarding Myelofibrosis in India: Inland Survey Insights

Abstract

Background: The lack of urgency to manage patients with MF (myelofibrosis), which is considered a slow-progressing cancer, may impact their quality of care. Additionally, the inadequacies in disease discussion and realistic expectation setting can hamper the continuum of care from the patient aspect. The current INLAND survey assessed the in-clinic management practices of MF, patient dialogue, and impact on patient perception in the MF continuum of care in India. Methods: The INLAND survey was conducted between 7th October to 20th November 2021 in 154 patients with MF under the management of 50 hematologists/medical oncologists in India. The survey assessed the disease burden in early MF, objective application of risk stratification, in-clinic communication, and impact on MF patient perception in India. Results: Demographics, patient journey, and symptom burden The patients in this sample had an average age of 51 years (25 - 80 years), an MF diagnosis at an average age of 49 years (22 - 79 years) and had experienced MF symptoms almost 6 months to over 2 years (average, 10 months) before diagnosis. The patients' myeloproliferative neoplasm (MPN) score at the time of interview was 37% and 58% in the 3rd and 4th quartiles, respectively. About 8% and 33% of patients belonged to the Low and Intermediate-1 Risk, respectively, and were suffering from a high symptom burden as assessed by the MPN-10 score. (Table 1) In-clinic management About 94% of healthcare practitioners (HCPs) in the survey ascribed to using a prognostic scoring tool for MF management, out of which 62% confirmed the use of Dynamic International Prognostic Scoring System (DIPSS) as their preferred tool for regular assessment. However, on comparing the HCPs' DIPSS assessment of each patient with the actual DIPSS as per the variables data it was seen that there was a mismatch in the risk ascribed to the MF patients, with many being misclassified into a lower category. (Figure 1) About 80% of the surveyed HCPs felt that they are proactive in their assessment of patient symptoms, while only 50% of patients agreed with this. Around 23% of patients felt that HCPs usually wait for the patients to talk about their symptoms and are not proactive in discussing all symptoms. While 54% of HCPs stated that they regularly use MPN-10 symptom assessment in the clinic, only 1% of surveyed patients had ever used an MPN-10 scoring booklet. In-clinic disease discussion and patient perception impact Almost all surveyed HCPs believed MF to be a blood cancer that can negatively impact a patient's quality of life (QoL) and progress to a more serious condition. However, in their discussion, only 26% HCPs made their patients aware that they are suffering from cancer, while most discussed it as a condition that may progress to cancer (50%) or as a blood disorder that can be managed (14%). Discussion to make the patient aware that MF needs lifelong treatment was done by only 10% HCPs. The resultant impact on patient perception was that most patients knew that MF is a serious health condition (92%), increases the need for transfusion (96%), and reduces QoL (98%). However, the patients were not aware that they were suffering from cancer or a condition that needs lifelong treatment. The patients' perception was also reflected in their MF treatment goals where both HCPs and patients were aligned that they value improvement of QoL (88% vs. 74%) as the most important goal. However, 62% HCPs (vs. 37% patients) prioritized anemia management, while 69% of patients (vs. 12% HCPs) valued symptom improvement as the next most important treatment goal. Additionally, overall survival was not a part of patient treatment goals, echoing the patients' disease perception results. Conclusion: The INLAND survey findings highlight the usually overlooked symptom burden in Low/Intermediate-1 Risk MF patients in India. The lack of habitual objective risk stratification and use of MPN-10 tool may cause underestimation of the disease burden and thus delay the appropriate management. Lack of in-clinic dialogues to increase patient awareness regarding MF being a cancer or a condition needing lifelong treatment may compromise patients' diligence to treatment. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal