CAR-T Meeting 2026 | Quality of life in patients after CAR T-cell therapy

My presentation defines quality of life according to the WHO as ‘a state of complete physical, mental and social well-being, and not merely the absence of disease or infirmity,’ which fits very well with how quality of life is understood today. Quality of life is considered multidimensional because it affects the physical, emotional, social, financial, and spiritual spheres. In order to reflect how it is affected in patients, it is necessary to use longitudinally validated tools.  In my presentation, I have integrated the currently published data on the quality of life of patients treated in clinical trials in the main constructs and comparing results with standard treatments. The most recent scientific evidence on quality of life outcomes in the real world. The results of our population analysed over 24 months. How quality of life is affected in caregivers and, finally, I highlight the role of advanced practice nurses in assessments, toxicity management and holistic support to turn survival into meaningful well-being.

In general, quality of life after CAR-T treatment follows a dynamic profile: an initial acute impact with intense symptoms due to possible early toxicities, followed by a gradual recovery for patients who respond to treatment, however, there is a sub-group that is affected by late toxicities, long-term sequelae, and persistent difficulties. In our cohort, quality of life  was severely affected at baseline because our sample had received multiple prior lines of treatment and had advanced disease: 79% considered it poor at the start of the study, with physical and emotional functioning being the most affected (79% and 78%, respectively). In addition, the most frequent symptoms were fatigue, pain, insomnia, and anxiety/depression in 75-76% of patients due to the uncertainty.

The acute phase shows a deterioration in quality of life: our sample presented 72% CRS and 18% neurotoxicity. In the first month after treatment, social functioning and role performance were also significantly affected. In terms of symptoms, the most affected are fatigue, insomnia, and pain. However, after a period of 3 to 6 months, patients who respond to treatment show improvements in their overall health, physical function and daily activities, although symptoms of fatigue and insomnia remain common. At the 24-month follow-up, only about 6% of patients continued to have a poor quality of life and about 11% suffered from anxiety or depression, although problems such as pain, insomnia, social functioning, and financial stress persisted in a significant subgroup. Careful monitoring of our patients has permitted us to identify the dynamic and evolving profile of patients’ quality of life and how we should proceed to implement measures for improvement according to the stage they are at.

Allow me to explain the main factors that affect the quality of life of CAR-T patients, both negative ones, which make things difficult, and positive ones, which aid recovery, based on our data and the current evidence.

On the negative side, acute toxicities are most severe at the beginning, due to cytokine release syndrome, neurotoxicity, and infections, and peak around day 15, affecting patients physically and emotionally. Initial frailty also plays an important role: factors including an ECOG score of 1 or higher, four or more prior lines of treatment (which occurred in 69% of our cohort), or a prior transplant (64% of patients). Emotional stress at baseline is also a strong predictor, and problems with insomnia, fatigue, financial stress, and social isolation persist later on. Caregiver stress exacerbates the situation; in recently published studies, 40% of caregivers experienced depression at six months and anxiety was prevalent throughout the 12-month follow-up due to the uncertain and unpredictable results.

On the positive side, the best factor is a good response to the disease or remission, which generates real benefits, including the 15-point improvements in physical functioning observed in trials. Early recovery between 3 and 6 months generates impulse, home care helps enormously (86% of our patients benefited from increased independence), low comorbidity (89% had three or fewer) and psychological support swing the balance towards better outcomes. According to our data, patients who responded to treatment stabilised well in the long term, and these interventions really mitigate the risks so that survival is meaningful.

As advanced practice nurses working with CAR-T patients, we play a very practical role in improving their quality of life: it’s about being proactive and holistic every step of the way. Of course, no nurse works alone, so we coordinate multidisciplinary teams like a smooth-running machine: social workers to handle finances, work problems, or family dynamics; psychologists to provide emotional support, not only to patients but also to caregivers; and physiotherapists for rehabilitation programmes, including exercises for fatigue or insomnia, which are significant long-term problems.

First, we start with systematic assessments using validated tools. We do this multiple times because it helps us detect patterns early and respond quickly. In our own study at Hospital Clínic de Barcelona, this approach was transformative: we saw poor quality of life decline from 79% at baseline to just 6% at 24 months. Then, during the acute phase immediately after infusion, we focus on proactive treatment and educate patients on what to watch for and when to call us. We also provide clear, structured information on what the course of the disease will be like, which really reduces anxiety and empowers them with self-care strategies. Breaking it done by areas, physically we focus on early treatment of symptoms and prevention of toxicity; socially, we connect people with resources so they don’t feel isolated, especially non-locals in our cohort; and emotionally/spiritually, we provide that continuity and personalization of support: by actively listening, helping them process all the information, and setting realistic expectations to increase satisfaction and adherence. Finally, for long-term follow-up, we promote home care, which benefited 86% of our patients in becoming independent. We adapt the intensity of care depending on their phase and response, and we always humanise it by including the family and genuinely listening to them. It is this combination of clinical expertise and compassionate care that translates CAR-T survival advances into real and meaningful well-being for survivors and their families.