The mental health impact of living with a Rare Disease

Written by Charlotte Richards on Thursday 19th September 2019

Increasing awareness and diagnosis of mental health issues and optimising the healthcare infrastructure to better support those with a mental health condition is a Global priority, with some markets investing billions in mental health initiatives. Along with an improvement in patient quality of life, it is well documented that improving the management of mental health conditions has a direct positive socioeconomic impact.

But what about those who suffer from mental health issues as a result of a physical illness? For those with a rare disease and their families, the impact of numerous healthcare interventions, the stress of ongoing uncertainty, the pressure to become an expert in your own condition, and the worry for the future can have a huge impact on mental wellness. With these factors and more at play, it may be no surprise that a disproportionate percentage of rare disease patients report experiencing depression, anxiety and stress versus the general population. Unfortunately, many rare disease patients and their families do not receive the emotional support that they need, and their mental health may be overlooked due to an ongoing focus on the management and treatment of physical symptoms.

Quality of Life impact

Designing studies that capture the totality of the burden of disease including QoL impact is essential in order to fully capture the patient and carer experience across the course of their condition. Not only does this support life sciences companies to demonstrate the potential value of new medical interventions outside of raw clinical measures, it also supports understanding of the patient journey and enhances development of meaningful patient engagement and patient support programmes.

Implementation of cross-sectional patient and carer data collection strategies are just one way in which the qualitative and quantitative burden can be captured and illustrated. At OPEN VIE, our real-world evidence (RWE) and patient-centred outcomes (PCO) teams are experts in the development of studies that capture and communicate meaningful data to support a measurable change in behaviour, with the ultimate goal of improving patient care and patient outcomes.

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OPEN VIE is a global, technology enabled, evidence and access consultancy, with a focus on patient centricity. We work with you to understand, demonstrate and communicate value to inspire change.

Get in touch to find out how we can support you to develop your RWE and PCO strategies to ensure that the longitudinal patient experience is captured appropriately.

Charlotte Richards, Customer Strategy Director, OPEN VIE

CharlotteRichards@openvie.com