Generalized pustular psoriasis: The importance of support and collaboration to promote advances in the GPP community

Collaboration in generalized pustular psoriasis 

During my conversation in part one with Dr Bruce Strober, we discussed generalized pustular psoriasis (GPP), and the impact it can have on patients and their family members. In this part, we discussed how improved communication and awareness within the GPP community could impact the treatment landscape and drive more positive outcomes for patients.

“Knowing I am connected to other patients is really important to me, as when I wake in the middle of the night, my husband is asleep, I know I have someone to talk to and share what I am going through. It feels a relief to share the pain.”- Yuzlina, living with GPP

Knowledge sharing

DR EMMANUELLE CLERISME-BEATY: When we discussed ongoing challenges faced by patients and their carers, as well as your aspirations for GPP care, you mentioned that lack of knowledge by treating physicians can be a barrier to optimal care. In your experience, how important is knowledge-sharing between healthcare professionals (HCPs) and experts in the GPP community? 

DR BRUCE STROBER: It is vital. Nobody knows anything unless they are taught it, so exposure to GPP and rare diseases generally is essential for HCPs. We need to share knowledge between doctors, and we need to share it at every level. Experts need to convey information to local physicians who can capture diagnoses on the frontline. If a doctor is not aware of GPP and the appropriate therapeutic approaches it will just lead to incorrect or missed diagnoses and incorrect treatment. Patients are shunted down the wrong avenue as a result and must be recovered somehow. Essentially, greater knowledge-sharing has the potential to make providers more aware of the tools available to them. This could lead to a shift where we are not approaching GPP reactively, but instead, we are being more proactive about patient care.

DR CLERISME-BEATY: Absolutely, a treatment is only effective as long as it reaches the right patients at the right time, and this requires a coordinated effort. Communication between patients, carers and advocacy groups is important too. We can generate data, but patients are actually experiencing what it is like to live with GPP. We have to give them the power to share their experiences, so that we can improve outcomes in people living with GPP. 

Collaborating for evolving care paradigms 

DR CLERISME-BEATY: Could you tell me what impact you believe greater collaboration can have in the context of evolving care paradigms?   

DR STROBER: For me, collaboration is key at every level – local, regional, national and international. There must be continual education about GPP. I think some of the best ways we can promote knowledge-sharing and collaboration between peers is in the form of visual case studies and by presenting data at symposia or other meetings. If we can repeatedly expose attendees to experts and emerging data, we will be able to drive greater and sustained awareness in treating physicians. I think that this kind of education over time will generate more effective treatment approaches that could become the standard of care across the GPP community in the future.

DR CLERISME-BEATY: I do agree, educating HCPs is key to having a significant impact on the patient journey. We rely on awareness in the clinical communities for patients to be identified and referred to the right physicians so that they can have access to treatment. I think how we support this education must be a cross-functional collaboration between patient, clinical and professional organizations. This way, we can really educate dermatologists and the broader group of treating physicians who are, as you mentioned, on the front line and the first points of contact for a patient. The difficulty is that not every patient will show up with a flare, so how do you capture those patients who are not in the hospital critically ill but still have significant burden and impact? I think that is why we need to continue to collaborate to raise awareness. 

Unmet needs

DR CLERISME-BEATY: Speaking of awareness, what would you say are the biggest concerns or unmet needs that remain for patients? 

DR STROBER: Patients are usually more efficacy-driven, they want to know that a therapy will work and continue to work. Whereas HCPs are more driven by questions like, “Is this patient going to have a safe experience with this effective medicine?”. Physicians in my experience also prioritize therapy access and ease of delivery to patients.

DR CLERISME-BEATY: Indeed, knowing that they have effective options is important to both patients and physicians. We know that chronic symptoms between flares can have a significant impact on patients’ long-term health and on mental health comorbidities. That's why our development has focused on the whole spectrum of the disease, with the goal of resolving the skin and systemic symptoms, with a safe profile, while taking away the anxiety and unpredictability associated with this inflammatory disease. 

DR STROBER: The main thing is that both HCPs and patients have confidence in the therapy that they are giving and receiving, respectively. This would allow patients to go a long time between visits whilst feeling that they are in control of their condition. Essentially it is about freeing the people from the constraints of GPP and allowing them to live more assuredly.

DR CLERISME-BEATY: I could not have said it better! Thank you, Dr Strober, for your time and your continued work to advance the care of patients living with GPP. 

Boehringer Ingelheim remain committed to helping people living with GPP to lead lives free of the impact of the condition.