STEP Research. The lived experience of Parkinson's disease: Insights from people living with the condition and those who support them

Transcription

1 STEP Research The lived experience of Parkinson's disease: Insights from people living with the condition and those who support them The STEP market research was conducted by Idea Couture, now part of Cognizant Digital Works, on behalf of UCB

2 BACKGROUND 2 Most descriptions of Parkinson s only focus on the well recognized physical motor symptoms including slowness of movement, rigidity, tremor and postural instability. 1 However, this does not reflect the full experience of people living with Parkinson s (PwP), who can also be affected by many other aspects of the condition. These can include non-motor symptoms, and emotional and social challenges faced by PwP, which may be just as impactful. 2-4 OBJECTIVES To better understand the full lived experience of Parkinson s disease including the conditions mental, social and emotional impact. To use these insights to develop solutions for the PwP, and those supporting them. 1. American Parkinson s Disease Association. Accessed 6 December, Chiong-Rivero H, Ryan GW, Flippen C, et al. Patient Relat Outcome Meas 2011;2011(2): Soundy A, Stubbs B, Roskell C. ScientificWorldJournal 2014;2014: Chaudhuri KR, Healy DG, Schapira AH. Lancet Neurol 2006;5(3):

3 METHODS 3 Market research design STEP (Solutions Transforming the Experience of Parkinson s) was a market research program conducted in the United Kingdom, United States and Canada by two anthropologists (one visual, one medical) and supported by three healthcare strategists (two user experience, one innovation) PwP, partners or those providing care, healthcare professionals (HCPs) and other Parkinson s experts were recruited through patient organizations and medical recruiting partners. Techniques and data collection First-hand experience of Parkinson s was gleaned directly from PwP and their loved ones through: ethnography context labs The experience of HCPs and other Parkinson s experts was collected through: expert interviews field immersions STEP is a registered trademark of the UCB Group of Companies UCB, Inc. All rights reserved

4 METHODS (cont d) 4 PwP and their partner/those providing care and support Ethnography: Empathetic study of people, behaviors, beliefs, attitudes, places, and relationships that form their lives through observation and interviews; participants were visited at home and asked to speak freely about their experience, and share the aspects that were most important to them Context labs: Open-ended group conversations in small groups of 3-4 people, where individual stories can be shared openly, and people can identify the experiences, motivations, needs, and ideas that matter most to them HCPs and other Parkinson s experts Expert interviews: In-depth, one-on-one interviews with HCPs and other experts that have frequent interactions with PwP Field immersions: Visits to the places where PwP spend time interacting with HCPs and other experts; these visits provide a look at how places impact people in their interactions with others, and their experience of treatment or care

5 METHODS (cont d) 5 ETHNOGRAPHY Empathetic study of people, behaviors, beliefs, attitudes, places, and relationships through observation and interviews; participants were visited at home and asked to speak freely about their experience CONTEXT LABS Open-ended group conversations in small groups of 3-4 people, where individual stories can be shared openly, and people can identify the aspects that matter most to them EXPERT INTERVIEWS In-depth, one-on-one interviews with healthcare professionals and other experts that have frequent interactions with PwP FIELD IMMERSIONS Visits to the places where PwP interact with HCPs and other experts; shed light on how places impact peoples interactions with others, and their experience of treatment or care People living with Parkinson s and their partner/those providing care and support Healthcare professionals and other Parkinson s experts

6 METHODS (cont d) 6 Each visit lasted between 1 and 4 hours Data were collected using field notes, video and audio recordings and photographs (with prior permission granted by all participants) Outcomes: Anthropologists and strategists combined observations, categorized findings into themes and developed: 1. An overview of key insights from the STEP research 2. An experiential Parkinson s journey for PwP and partners and other loved ones providing care

7 RESULTS 7 Participants A total of 63 PwP, 19 partners or those providing care, 18 HCPs and other Parkinson s experts participated in the program. Ethnography 16 participants Context labs 66 participants Expert interviews 18 participants Field immersions 3 venues 12 PwP 4 caregivers 51 PwP 15 caregivers 5 neurologists 2 geriatricians 2 nurse practitioners 2 physiotherapists 2 occupational therapists 1 health transition coach 1 neuropsychiatrist 1 Parkinson s dance program founder 1 associate at Parkinson s Society of Canada 1 medical information group associate from UCB Pharma 1 physiotherapy/ mobility clinic 1 comprehensive care Parkinson s clinic 1 Parkinson s dance class

8 RESULTS 8 Participants STEP included a wide variety and diversity of PwP representing the diversity of age, disease experience and treatment experience. Baseline characteristic Age, range, years Time since Parkinson s diagnosis 6 months-2 years 3-10 years years 21+ years Stage of Parkinson s* Diagnosis Maintenance Complex Palliative (end-stage) PwP (n) Had undergone deep brain stimulation *Definition of stages used for the research: Diagnosis = Medication/treatment generally work well and symptoms usually do not progress very far for a couple of years; Maintenance = Relatively stable with effective medication, relief of morbidity, monitoring reviews, prevention of complications; Complex = Patients needs become more complex and serious symptoms and psychosocial needs have to be addressed; Palliative (end-stage) = Patient experiences loss of independence.

9 9 OUTCOMES 1. Key insights Clinical definitions of Parkinson s over-simplify the full experience; to truly appreciate challenges of living with the condition, the complex physical, mental, social, and emotional experience must be included Physical loss is not always the hardest; PwP also evaluate Parkinson s impact based on social loss, emotional lows, and sometimes also cognitive impairment Parkinson s is not simply a gradual accumulation of symptoms but a complex transition from a life without Parkinson s to a PwP; this can vary dramatically (throughout day and over-time) depending on medication/lifestyle PwP see the impact on quality-of-life as central, as Parkinson s can challenge mood, sleep, daily activities, and interpersonal relationships

10 10 OUTCOMES 1. Key insights (cont d) PwP become the experts on their version of Parkinson s and rely on a diverse network of experts for support PwP consider themselves host to an unwelcomed guest, striving for Parkinson s not to become their identity Dedicated to maintaining a pre-parkinson s lifestyle, PwP develop strategies to manage daily activities; many try to embrace their situation with optimism Parkinson s is a shared disease; progression to advanced stages is difficult to navigate for both PwP and loved ones/caregivers

11 11 OUTCOMES 1. Key insights (cont d)

12 12 OUTCOMES 2. An experiential Parkinson s journey Medical scales defining progression (eg Hoehn & Yahr) 1 fail to capture the full experience of a complex and individual experience. Our findings suggest that, overall, people living with Parkinson s first experience the condition as a lifestyle disorder, then as intermittent periods of capability and loss, and finally as a loss of independence. In addition, their loved ones also experience a transition; partners/friends/family members often transition to full-time caregivers. 1. Hoehn and Yahr scale. EPDA. Accessed 6 December 2017.

13 OUTCOMES An experiential Parkinson s journey (cont d) Based on the insights, the following phases have been identified as Parkinson s unfolds: o Pre-diagnosis: A person notices a first sign such as a finger twitch. At first, these early symptoms are generally rationalized as part of natural aging process. o Diagnosis: A moment of transition that alters one s understanding of their physical health. o Lifestyle: A period of adjustment to a new way of life marked by mild to moderate limitations; Parkinson s feels like a bother, not a disease.. o Straddle: Oscillation between pre-parkinson s life in ON (medication is working and symptoms reduced) and glimpses of the disease in OFF moments (medication effect has worn off and symptoms become more severe). o Disease: After years of navigating ON and OFF periods, the experience of Parkinson s transforms into a disease in the medical sense of the word. Unmanageable fluctuations, loss of independence, development of other conditions and medication side effects affect the patient s entire personhood as they know it.

14 14 Conclusions The STEP market research illustrates the unique lived experience of Parkinson s, and hopes to give voice to people living with the condition in a way that better incorporates the broad impact of Parkinson s on a person s life, relationships and sense of self. These evidence-based insights are supporting the development of solutions for people living with Parkinson s, addressing the condition s multiple dimensions beyond just symptom control.

15 STEP Market Research Scientific Reference 15 This short report is based on the abstract and poster presented at the 4 th World Parkinson Congress 1 The lived experience of Parkinson's disease: insights from people living with the condition and those who support them (STEP TM research). Journal of Parkinson's disease;2016;6;suppl.1;246. 4th World Parkinson Congress (WPC), September 20-23, 2016;Portland, United States (Abstract P40.25) 2 The lived experience of Parkinson's disease: insights from people living with the condition and those who support them (STEP TM research);2016; 4th World Parkinson Congress (WPC), September 20-23, 2016; Portland, United States (Poster P40.25) Authors of both communications : Jared Niedenthal 1, Lizzie Graham 2, Courtney Lawrence 3, Elisabeth Dohin 1, Patrick Glinski 3 and Dolors Terricabras 1 1 UCB Pharma, 2 European Parkinson s Disease Association and 3 Idea Couture, now part of Cognizant Digital Works