SCD Awareness Month: Managing the Complexities of SCD Care

Dr. Martin Besser and Dr. Jeremy Anderson offer their insights on Enhancing Patient Care and Outcomes

Despite pockets of excellence in specialist centres, the quality of care for Sickle Cell Disease (SCD) patients remains inconsistent – oscillating wildly based on whichever staff patients encounter or region they are in.

Instances of care failings have resulted in preventable patient deaths for decades, while near misses and close calls occur with alarming regularity. The message is clear: too many within the professional community lack an understanding of how to effectively manage sickle cell patients and their complex needs. This knowledge gap facilitates treatment inconsistencies, puts patients at risk, and enables a culture where sub-optimal care is tolerated rather than rectified. Until sickle cell education is made mandatory across the board, patients will continue to suffer from a lack of expertise among many of the individuals charged with their care.?

For this reason, Sanius Health and our community of clinical experts are raising awareness of unmet patient needs - especially those they experience within clinical settings. Alongside individuals like Dr. Martin Besser (Cambridge University Hospitals) and Jeremy Anderson (Imperial College Healthcare), we’re working with clinicians to advocate for patients and to remove barriers that undermine their care.

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Barriers to Care for the SCD Community

SCD is the world's fastest growing and most prevalent genetic blood disorder. Yet, despite increasing drives to diagnose and treat patients earlier, SCD’s impact on public health remains far-reaching.

The incidence of SCD is rising in the UK for several reasons. Improved newborn screening programmes are enabling earlier diagnosis, allowing prompt treatment to begin before complications arise. Enhanced secondary and tertiary care interventions, such as hydroxyurea therapy and stem cell transplants, are also helping patients live longer. Patients and providers alike are now better informed about effectively managing risk factors associated with SCD and other haemoglobinopathies.

?Dr. Martin Besser credits significant advances in ‘universal newborn screening, penicillin prophylaxis, vaccination, hydroxyurea and the introduction of the national registry’ as indicators for better SCD outcomes. Taken together, as Martin reflects, these advances in screening, treatment, education, and awareness have contributed to more and more SCD patients thriving than ever before.

However, this growing population faces a healthcare system that is often inadequately prepared to address their complex needs across the lifespan. With over 15,000 people living with SCD, the NHS spends millions annually for care ranging from pain management to stem cell transplants. Patients with SCD have above-average rates of acute care utilisation, reflecting gaps in the outpatient management of SCD complications.

?In addition, access to specialty services remains a major obstacle, as there are a limited number of haematologists and facilities with expertise in treating SCD, particularly in rural regions.

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Overcoming the Pain Challenge

Beyond its physical toll, SCD also confers psychosocial challenges, as patients deal with chronic pain, school and work absences, and decreased quality of life. Even when patients can access specialty providers, inadequate pain management often persists through no fault of their own.

Despite pain being the hallmark of SCD, many patients report difficulty finding clinicians who have the confidence, familiarity or experience to effectively calibrate prescriptions that exactly fit their needs. In addition, care delivery can often be fragmented as well, with patients seeing an array of specialists, but lacking coordination and continuity. This fragmentation can result in lower quality care and poorer health outcomes. As Jeremy Anderson states:

“By the time people come to talk to me about their use of opioids, their pain is excruciating. Most people cannot recall the last time they were not in pain—and that isn't normal, even for people with sickle cell disease. So, our goal at that point is to improve their level of pain. There may be a lot of different things that the person can do to improve their pain that intuitively make sense, like eating and drinking better, getting better sleep, exercise and so on.”

Insights from the Sanius Health community and its associated technologies are now allowing patients to build an understanding of the indicators of pain levels. By tracking daily activities, behaviours, and pain levels over time, Sanius is helping patients to uncover patterns and connections between factors like exercise, sleep, stress levels, and pain that patients may not have been cognisant of before.

As Jeremy Anderson states, these insights allow patients to better understand how their lifestyle choices each day impact their pain and health outcomes. Equipped with this new understanding, patients can modify behaviours and habits to improve their pain management through more informed self-care:

“We know that getting people moving makes their pain better. We know that not moving makes pain worse. This is one of the things I think Sanius is helping us better understand in sickle cell. With the data being collected Sanius is building an understanding of what things people do that predict more pain vs. less pain and this needs to shape the way we deliver care going forward”

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Sanius Health: Working with the Clinical Community to Support Patients

While outcomes for patients have improved considerably over recent decades, people living with SCD still face numerous barriers to receiving optimal care. With the SCD population in the UK projected to grow over the next decade, dedicated public health efforts focused on screening, disease management, and access to multidisciplinary care will be key to minimising the burden on disease.

To keep pace with the rising prevalence of SCD and their changing needs, Sanius Health is working with the patient and clinical community to advocate for better care delivery and equitable access to specialty services. This SCD Awareness Month, we are working with patients and their clinicians to highlight factors that impede access, consistency and best possible outcomes of receiving SCD care.

By shedding light on barriers to care that many SCD patients face, we are working to eradicate the stigma and unmet needs the community faces within clinical settings. Dr. Besser reflects on Sanius Health’s impact on the SCD community, especially in advocating for advancing clinical activity:

“We need better endpoints for clinical trials than the ones that are currently used. I hope that work like that of Sanius Health will improve our understanding of the range of symptomatology at baseline and during crisis. Better designed trials for disease modifying drugs and other interventions will help develop better treatment options for the community”

To learn more about the work Sanius Health and our clinical experts are doing to support the SCD community this September, visit: www.saniushealth.com