Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
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Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more
Developing IQVIA’s positions on key trends in the pharma and life sciences industries, with a focus on EMEA.
Learn more
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VIEW ROLESParkinson’s Disease is characterised by a growing global disease burden driven by an ageing population, but also by significant research activity. Currently there are 82 clinical trials in phases I to III globally, with a large share investigating novel mechanisms of action including cell and gene therapies.1,2 The recent discovery of a biomarker which may enable the identification of people at risk of Parkinson’s before they become symptomatic also holds promise for early and decisive diagnosis and treatment as well as easier and faster development of therapies.3
However, the fact remains that currently there is no disease-modifying treatment available and existing treatments, both pharmaceutical and otherwise, focus on managing symptoms. This makes the need for support for patients and their loved ones all the more urgent, but it is a need that often is not met or met insufficiently.
IQVIA partnered with Parkinson’s Europe to conduct a survey of people living with Parkinson’s to discover which difficulties they encounter in the course of diagnosis, treatment, and adjusting to living with the disease and where they could benefit from additional support. The survey consisted of in-depth interviews with ten participants in early to mid-stage disease based in the UK, France, Germany, Italy, Portugal, and Spain.
About 10% of people with Parkinson’s suffer from early onset, defined as experiencing symptoms before the age of 50. These patients and those over the age of fifty but who are still part of the workforce encounter a range of challenges older patients do not face. Their journey to diagnosis and treatment is often longer and more involved since for many HCPs early onset Parkinson’s is not top of mind. Patients report being met with scepticism, a reluctance to diagnose Parkinson’s in younger people, and even hostility by HCPs before finally being diagnosed.
For those still working, a Parkinson’s diagnosis may have a profound impact on their professional lives, such as having to change jobs to a less demanding one or reduce working hours. There may also be a negative impact on career progression and promotions, or difficulty finding a new job that matches their qualifications. Ultimately, they may end up underpaid or having to leave the workforce earlier than planned, with the long-term negative financial and psychological impact associated.
Younger patients also report difficulty talking about their disease which carries the stigma of being an “old-age disease” and that they would benefit from support specifically tailored to their age group.
Not surprisingly, being diagnosed and then adjusting to life with Parkinson’s has a considerable impact on people’s mental health, and depression, anxiety, and fear are experienced by many patients although a few take the diagnosis as an opportunity to make life meaningful by taking ownership of their own health or helping others.
Especially the moment of diagnosis is often one of shock and disbelief followed by uncertainty. Most patients reported feeling sad, empty, and overwhelmed by the possible burden of an incurable disease although others felt relieved to finally have arrived at a diagnosis.
Many report suffering from social and emotional isolation due to the impact of symptoms on their ability to participate in social activities, as well as the emotional impact of the disease on their relationships with loved ones. Parkinson's can limit patients' autonomy, making it difficult for them to engage in activities outside of their safe environment – one respondent stated, “I feel as if the disease is turning me into a coward”. Young-onset patients may feel a stronger social impact, as traveling or going out for dinner or evening get-togethers is becoming more difficult, and there is a shortage of age-specific support groups. For older patients, the additional challenges created by Parkinson’s can exacerbate age-related depression and social isolation.
However, this particular area of need is largely overlooked, and patients frequently report receiving very little in the way of psychosocial support, or, in the words of one survey participant, “being left to get on by yourself”. There is also very little support for caregivers who are often close family members.
Based on these insights garnered from people living with the disease, health system stakeholders and pharmaceutical companies looking to alleviate burden of disease and improve outcomes should consider additional support measures:
1 Two Steps Forward, One Step Back: The Long Road to Success in CNS - IQVIA
2 Global Trends in R&D 2024: Activity, productivity, and enablers - IQVIA
3 https://www.michaeljfox.org/news/breaking-news-parkinsons-disease-biomarker-found
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