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The emotional journey of higher risk MDS

How to read this infographic: The following map serves to tell an emotionally-rich story of a The Emotional Journey of Higher-Risk MDS patient and caregiver's experience living with Higher-Risk MDS. While each person's journey is individualized, 4 key phases emerge as a common thread. Within each phase are emotional micro-moments that help further bring to life the Higher-Risk MDS experience and the unmet needs throughout their journey. ATM PHASE 1| THE ROAD TO DIAGNOSIS PHASE 2 | GRASPING FOR ANSWERS PHASE 3| ON BORROWED TIME PHASE 4| CHANGING FOCUS Life before MDS, people are living in blissful ignorance- Rarity of MDS and complexity of staging makes it hard for For patients, HMA treatments feel like they're simply on In due course, patients and their loved ones reach a critical they are looking forward to their "golden years". Initial patients and their loved ones to grasp their diagnosis and borrowed time (until a cure comes along). And the moment in their journey where they begin to repercussions of HMA treatment makes this borrowed time feel misspent. signs and symptoms are so silent that they're dismissed confidently make decisions about their treatment, which re-contemplate their path forward for the long haul. as trivial, inhibiting early suspicions and delaying leads to feelings of anger, denial, self-blame and guilt. HCP involvement. Losing Their Footing Reconciling Emotions Mourning A Loss Imprisoned By Routine Standing At A Crossroads Embracing The Present Emotional Latching On To A Plan Paralysis A series of events ring Imprisoned by their rigorous HMA After countless blood After diagnosis, Eventually, patients Initiation of treatment Patients hit a juncture Patients begin to the alarm bells as tests and exams like a come to realize there is wreaks havoc on the where the end of an accept their life patients and their bone marrow biopsy, HMA cycle or a change in clinical outcome "something doesn't little to no room to patient's sense of time, treatment schedule uncertainty. Shifting caregivers go through feel right" and patients patients hear “MDS" for exercise a choice in body, and space – their and the frequency of their focus from the a period of emotional are triggered to the first time at time of their treatment interaction with the hospital/clinic visits, forces them to future to the present reconciliation, which investigate. While there is mounting diagnosis. The bleak options, and they feel world around them. patients have no re-assess their path moment and the small involves information things in life. While they still have The disruptive nature agency, and go through the motions of long-term prognosis is powerless. Rarely a forward. While seeking. This moment of "processing" can sometimes hold up the joint decision, the physician makes the call, and patients concern, they down- emotionally and of treatment logistics emotionally taxed, they and physical effects feels like a loss of who play it as a minor take stock of the costs cognitively paralyzing. For a brief moment treatment which moments of despair, health hiccup, leaving comes with their own and losses, to figure they continue living acceptance of their them emotionally they once were, and the life they thought emotional price tag. with a greater sense of calm and purpose the their life comes to a disease or even delay brusquely latch onto out what they stand unprepared for dark standstill. the plan set forward. to gain by continuing the initiation of their what's to come. much- ded they'd be living. the fight. best they can, hoping one day for a cure. treatment. · Patients doubt and minimize initial HR MDS · The uncertainty and ambiguity surrounding HR MDS is · Patients experience a sense of loss or mourning for · Support that goes across the patient journey is hard UNMET NEEDS signs and symptoms overwhelming and leaves them unprepared for their old self, old life and past dreams to come by given it's chronic and long-term nature, upcoming journey. especially within aging patient population Key pain points HR MDS is a rare and complex and so can be missed · Limited physical presence and human contact with experienced by diagnosed as something more common i.e. low iron · Reconciliation of their emotions after their diagnosis, family members and friends can create a lonely • Many want to find their voice and find solace in patients and their impairs their ability to process their disease and experience for patients and their caregivers helping others especially older patients who want to caregivers that shape · Different names cause confusion, ambiguity, and sometimes delays initiation of treatment leave some sort of legacy experience of minimization of severity · Pre and post treatment effects i.e. nausea, rash, Higher-Risk MDS. bruising, fatigue · Lack of consistent staging protocols, especially at a community specialist level · Pain during treatments · Distressing diagnostics such as the BMB experience · Loss of control and loss of their body to the treatment schedule and the treatment effects · Perpetual weakness leads to fragility · Logistical hurdles such as getting to and from their treatment center (especially without a caregiver) can add to the day's stress · Long wait times can exacerbate emotional distress as time is drained between hospital visits and clinic days · Centralize emotional, functional, and social support Increase early detection with patient and HCP Reduce ambiguity by providing concreteness and · Offset patient's sense of loss and mourning by helping OPPORTUNITIES resources to alleviate the decision making at the awareness campaigns + HR MDS screening certainty where you can to speed up their emotional ease the transition into treatment and providing ways crossroad and provide family support services as part reconciliation period to maintain sense of self and community throughout Opportunities where · Improve the diagnosis and staging experience with of MBG offering treatment. MBG452 can intervene standardized language + protocols in order to positively impact the patient and caregiver journey. · Alleviate the HMA treatment experience to improve patient emotional wellbeing and engage patients to motivate them towards long-term treatment as needed How to read this infographic: The following map serves to tell an emotionally-rich story of a The Emotional Journey of Higher-Risk MDS patient and caregiver's experience living with Higher-Risk MDS. While each person's journey is individualized, 4 key phases emerge as a common thread. Within each phase are emotional micro-moments that help further bring to life the Higher-Risk MDS experience and the unmet needs throughout their journey. ATM PHASE 1| THE ROAD TO DIAGNOSIS PHASE 2 | GRASPING FOR ANSWERS PHASE 3| ON BORROWED TIME PHASE 4| CHANGING FOCUS Life before MDS, people are living in blissful ignorance- Rarity of MDS and complexity of staging makes it hard for For patients, HMA treatments feel like they're simply on In due course, patients and their loved ones reach a critical they are looking forward to their "golden years". Initial patients and their loved ones to grasp their diagnosis and borrowed time (until a cure comes along). And the moment in their journey where they begin to repercussions of HMA treatment makes this borrowed time feel misspent. signs and symptoms are so silent that they're dismissed confidently make decisions about their treatment, which re-contemplate their path forward for the long haul. as trivial, inhibiting early suspicions and delaying leads to feelings of anger, denial, self-blame and guilt. HCP involvement. Losing Their Footing Reconciling Emotions Mourning A Loss Imprisoned By Routine Standing At A Crossroads Embracing The Present Emotional Latching On To A Plan Paralysis A series of events ring Imprisoned by their rigorous HMA After countless blood After diagnosis, Eventually, patients Initiation of treatment Patients hit a juncture Patients begin to the alarm bells as tests and exams like a come to realize there is wreaks havoc on the where the end of an accept their life patients and their bone marrow biopsy, HMA cycle or a change in clinical outcome "something doesn't little to no room to patient's sense of time, treatment schedule uncertainty. Shifting caregivers go through feel right" and patients patients hear “MDS" for exercise a choice in body, and space – their and the frequency of their focus from the a period of emotional are triggered to the first time at time of their treatment interaction with the hospital/clinic visits, forces them to future to the present reconciliation, which investigate. While there is mounting diagnosis. The bleak options, and they feel world around them. patients have no re-assess their path moment and the small involves information things in life. While they still have The disruptive nature agency, and go through the motions of long-term prognosis is powerless. Rarely a forward. While seeking. This moment of "processing" can sometimes hold up the joint decision, the physician makes the call, and patients concern, they down- emotionally and of treatment logistics emotionally taxed, they and physical effects feels like a loss of who play it as a minor take stock of the costs cognitively paralyzing. For a brief moment treatment which moments of despair, health hiccup, leaving comes with their own and losses, to figure they continue living acceptance of their them emotionally they once were, and the life they thought emotional price tag. with a greater sense of calm and purpose the their life comes to a disease or even delay brusquely latch onto out what they stand unprepared for dark standstill. the plan set forward. to gain by continuing the initiation of their what's to come. much- ded they'd be living. the fight. best they can, hoping one day for a cure. treatment. · Patients doubt and minimize initial HR MDS · The uncertainty and ambiguity surrounding HR MDS is · Patients experience a sense of loss or mourning for · Support that goes across the patient journey is hard UNMET NEEDS signs and symptoms overwhelming and leaves them unprepared for their old self, old life and past dreams to come by given it's chronic and long-term nature, upcoming journey. especially within aging patient population Key pain points HR MDS is a rare and complex and so can be missed · Limited physical presence and human contact with experienced by diagnosed as something more common i.e. low iron · Reconciliation of their emotions after their diagnosis, family members and friends can create a lonely • Many want to find their voice and find solace in patients and their impairs their ability to process their disease and experience for patients and their caregivers helping others especially older patients who want to caregivers that shape · Different names cause confusion, ambiguity, and sometimes delays initiation of treatment leave some sort of legacy experience of minimization of severity · Pre and post treatment effects i.e. nausea, rash, Higher-Risk MDS. bruising, fatigue · Lack of consistent staging protocols, especially at a community specialist level · Pain during treatments · Distressing diagnostics such as the BMB experience · Loss of control and loss of their body to the treatment schedule and the treatment effects · Perpetual weakness leads to fragility · Logistical hurdles such as getting to and from their treatment center (especially without a caregiver) can add to the day's stress · Long wait times can exacerbate emotional distress as time is drained between hospital visits and clinic days · Centralize emotional, functional, and social support Increase early detection with patient and HCP Reduce ambiguity by providing concreteness and · Offset patient's sense of loss and mourning by helping OPPORTUNITIES resources to alleviate the decision making at the awareness campaigns + HR MDS screening certainty where you can to speed up their emotional ease the transition into treatment and providing ways crossroad and provide family support services as part reconciliation period to maintain sense of self and community throughout Opportunities where · Improve the diagnosis and staging experience with of MBG offering treatment. MBG452 can intervene standardized language + protocols in order to positively impact the patient and caregiver journey. · Alleviate the HMA treatment experience to improve patient emotional wellbeing and engage patients to motivate them towards long-term treatment as needed

The emotional journey of higher risk MDS

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Infographic created for Novartis to communicate to patients "The emotional journey of higher-risk MDS"

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