Blood cancers: from tests to waiting times, there are too many disparities across the regions when it comes to accessing treatment

It is no longer simply the availability of innovative treatments that determines the quality of care for those diagnosed with blood cancer. The real challenge is to make them available as part of a care pathway centred on the person’s needs in every respect. This is the message of the White Paper presented at the Blood Cancer Summit, organised by Isheo. The document is the result of five regional focus groups, held in Lombardy, Lazio, Umbria, Sicily and Puglia, attended by haematologists, nurses, pharmacists, nutritionists, psychologists, healthcare managers and patient organisations. These focus groups led to a survey which highlighted the gaps that still exist. For example, differences persist in the availability of diagnostic and molecular tests to identify patients who are suitable candidates for personalised therapies. Organisational complexity, waiting times and the fragmentation of services can slow down access to care.

The treatment pathway shows a greater degree of consistency: once an appropriate diagnosis has been made, the main innovative treatments are accessible. The challenges now lie in supporting the patient, coordinating healthcare professionals, managing side effects and ensuring continuity of care. The most significant gap, however, lies in patient care, where regional disparities are also greatest. As the document makes clear, patient management must take into account not only the disease itself but also psychological, nutritional, rehabilitative, social, family, economic and organisational aspects. “We have increasingly effective treatments, specialised professionals and advanced technological tools; however, we must build the bridges that allow all these components to work together,” emphasises Davide Integlia, CEO of Isheo. The White Paper proposes ten actions to build the missing bridges. The care pathway should incorporate roles such as the case manager, the family and community nurse, the clinical nutritionist and the palliative care specialist, who are able to link the various nodes of the network. “Talking about a ‘care pathway’ means recognising that a person with blood cancer does not simply enter and leave the healthcare system for the duration of a consultation or a course of treatment. The illness affects their life, that of their family and often their work, relationships and financial stability. This is why care must be comprehensive and continuous,” says Davide Petruzzelli, president of La Lampada di Aladino.

Finally, the white paper sets out a ten-point guide, according to which we must move from regulations to pathways and from data to actionable knowledge. The document first and foremost identifies as priorities early intervention, a stable point of contact, the need for each region to guide patients towards the correct test at the most appropriate time, and therefore the establishment of stable points of contact and clear communication, tailored to different levels of health literacy. The treatment pathway shows a greater degree of standardisation: once a patient has reached a centre of expertise and received an appropriate diagnosis, the main innovative therapies are generally accessible throughout the country. Care must take into account not only the disease itself but also psychological, nutritional, rehabilitative, social, family, economic and organisational aspects. Among the most commonly identified needs are psychological support, adapted physical activity and rehabilitation, therapeutic education, guidance on services and support for carers. Palliative care itself is recommended as an early and integrated component of the care pathway, focused on symptom management and quality of life.

According to the White Paper, one of the solutions lies in transforming the Diagnostic-Therapeutic-Care Pathway (PDTA) from a predominantly formal tool into a genuine organisational cornerstone of patient care. The PDTA should permanently incorporate liaison roles such as Case Managers, Nurse Navigators, Family and Community Nurses, Kinesiologists, Clinical Nutritionists, Palliative Care Specialists and Link Workers, who are able to connect the various nodes of the network and support patients as they navigate the healthcare system and, more generally, towards social inclusion.

At the same time, patient organisations play a strategic role: their integration into cancer networks and PDTAs makes it possible to identify needs that traditional healthcare services may overlook and to contribute to the design and evaluation of care models that are more person-centred. This approach must extend to long-term survivorship. For people living with the disease over the long term or who have completed their treatment, follow-up cannot be limited to clinical monitoring for recurrence: it must include psychological support, rehabilitation, the promotion of healthy lifestyles, the management of late effects of treatment, and social and occupational reintegration.