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IQVIA Patient Support Programs: Making a difference to the healthcare experience
Dive deeper into the role of IQVIA nurses and the importance of optimizing PSPs to support people living with a rare disease and adolescents living with long-term conditions
Clare Moloney, Insights and Programme Design
Jessica Walburn, Behavioural Science Associate Director
Evelyn Walsh, Nurse Advisor
Jul 28, 2022

Each and every individual who is diagnosed and treated for a condition will have their own unique experience. Personal factors, mitigating factors, circumstance and more, can mean that one person’s experience will be very different from the next. With that, comes complexities and challenges that healthcare professionals can only navigate by truly understanding and supporting people to overcome barriers to accessing the care they need. Now, imagine this but with the added and very specific support needs of those living with a rare disease and adolescents living with long-term conditions. Unfortunately, too often these additional complexities and requirements are neglected in patient support program designs.

In fact, we recently conducted our own research during a webinar that probed deeper into PSP design for adolescents and rare diseases. We asked our viewers: how well do we as an industry believe that people with rare diseases are supported?

60% said not at all
37.8% said adequately
2.2% said well-supported

This lack of support can lead to several barriers along their care journey, with a major challenge being non-adherence to their treatment plans.

We also asked our viewers: to what extent do you think that adolescents and those with rare diseases would benefit from PSPs that specifically address their needs?

0% said not at all
10.5% were uncertain
89.5% said very much so

There is a clear and real need for PSP designs to address the barriers faced by people living with a rare disease or long-term condition. PSPs must consider the unique support needs of adolescents and those living with rare diseases to ensure a positive patient experience and improve adherence.

Experience on the front line

IQVIA’s Nurse Advisor, Evelyn Walsh, has worked directly with adolescents living with a long-term condition as part of a support program. In her experience, she’s identified four main challenges that she believes affect compliance in adolescents:

1. The change in routine

School, social activities, morning routines, meal-times and more can all conflict with treatment schedules.

2. The emotional and psychological impact of having a long-term condition

Stigma and shame are heightened during adolescence when the desire to be “normal” is important, and the inconvenience of a treatment schedule can add to this. Feeling shameful about their condition could also increase people’s chances of depression, low mood and poor quality of life.

3. The potential side effects of treatment on body image

Again, this is even more sensitive to people going through adolescence, as changes in body image are directly related to self-confidence and could also increase people’s chances of depression.

4. The transition to adult services in hospital

As young people transition from pediatric to adult services, the HCPs involved in their care are likely to change. And with parents, guardians or carers no longer needed to be involved in appointments, it’s likely that adherence may drop off.

“By aged 12 or 13, teenagers really begin to self-reflect on what it means to have a chronic illness and what it means to be different from their peers,” says Walsh.

“Their friends may appear to have freedom and are able to change plans at the last minute, but this is very difficult if you’re dealing with a rare disease and medications that need to be timed. So, sometimes, in order to be like their peers, they’re going to be non-adherent.”

It’s this level of understanding that shows the industry recognizes the impact that people’s conditions have on their lives — it is seen and heard, and steps are being taken to address the challenges they face.

The importance of IQVIA Patient Support Programs

There is a wealth of evidence that shows that pharma-sponsored PSPs significantly improve health outcomes for patients involved in them. As well as encouraging adherence, they look to empower patients to self-manage, and ensure that people have access to the medicines that are right for them.

For over 40 years, IQVIA has been dedicated to improving the patient experience by designing and delivering PSPs that work. As well as helping customers navigate NHS processes to ensure they remain compliant, our highly skilled nursing teams make a difference to patients’ lives on a daily basis.

“PSPs allow patients to have a more normal life experience,” explains Leontia Gribben, Director of Nursing Services.

“There really is a great satisfaction as a nurse advisor in being able to help and support people, and improve their quality of life,” says Walsh.

Take a closer look at IQVIA’s Nursing Services here.

Optimize the patient experience today

Understanding patients’ experiences is vital in order to be able to provide them with meaningful support. Not only do IQVIA's digital, nurse, and behavioral science experts who work with patients understand their experience, but they also know what type of support is required to meet their needs.

IQVIA can be a dedicated partner in helping you optimize your PSPs and ensure unique support needs are being met.

Learn more about IQVIA PSPs, here.

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