Patient-centred research: less about the tumour, more about the patient
Amir Zamanipoor Najafabadi, a doctor and researcher at the LUMC’s Department of Neurosurgery, researches how meningioma treatment can have a long-term effect on a patient’s life. He recently defended his dissertation: with a patient on the examining committee, this was a unique occasion.
Meningiomas are benign tumours that grow in the skull. They form in the meninges, the tissue covering the brain and spinal cord. Although they are not usually malignant, these tumours can develop into a seriously debilitating and sometimes life-threatening problem.
Shift the focus
Zamanipoor Najafabadi explains that in recent decades many important neurosurgical developments have focused on safely removing these tumours, ‘However, surgery and radiotherapy do not necessarily lead to a long-term cure.’
In his research he followed patients for an average of nine years after treatment. He found that a large number of patients reported a lower quality of life caused by emotional, physical and neurocognitive complaints. They also reported reduced work productivity and more susceptibility to anxiety and depression. ‘These results confirm how important it is to shift the focus of the treatment from the tumour to the patient.’
‘We doctors tend not to pay enough attention to these potential long-term problems, especially as visits to outpatient clinics become less frequent,’ Zamanipoor Najafabadi notes. Wouter van Furth, a neurosurgeon at the LUMC and primary supervisor: ‘This highlights the differences between what experts and patients find important in healthcare today.’
To address such problems, Zamanipoor Najafabadi suggests moving towards value-based healthcare. This is a framework aimed at restructuring the medical system and its service delivery to improve care processes and patient outcomes. ‘This approach would require more involvement from case specialists, for instance, who can provide the patient and their family with guidance on diagnosis and intervention, and more patient access to rehabilitation programmes.’
Unique PhD ceremony
The LUMC encourages restructuring healthcare by enabling patients to be more actively engaged in research. Van Furth describes the relevance of having a meningioma patient on the examining committee: ‘This shows that we are working towards giving the patient more of a voice. We are extending our vision beyond that of the doctor’s perspective and listen to what patients want when it comes to care.’ He encourages other medical fields to consider similar initiatives. ‘This will help us improve our patient care.’
Photo: Marc de Haan