VOC-related hospitalizations impair SCD children’s quality of life: Study

Effects were higher in the first months after a crisis and decreased with time

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

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Being hospitalized due to a vaso-occlusive crisis (VOC) is associated with a significant reduction in quality of life for children with sickle cell disease (SCD), and has a special impact on their physical functioning, a study finds.

The negative effects were particularly higher in the first months after a crisis and decreased with time, but remained significant for up to a year. The impact became more pronounced with each hospitalization, however.

“Healthcare providers should focus on the prevention of VOCs, but in case hospitalization for VOC occurs, optimal attention and guidance are recommended for the after-effects,” the researchers wrote in “Impact of hospitalization for vaso-occlusive crisis on health-related quality of life in children with sickle cell disease,” which was published in Pediatric Blood & Cancer.

Vaso-occlusive crises occur when the abnormally shaped red blood cells that mark SCD stick together and form clumps that block blood vessels. These blockages result in oxygen deprivation in some tissues and can activate an inflammatory cascade, which can result in extreme pain.

While VOCs can be mostly managed at home with analgesics, they are the most common cause of hospital admissions and emergency visits with SCD.

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Understanding the diverse nature of sickle cell pain crises

Long-term impact of hospitalization after VOC

While VOCs can extract a meaningful toll on a person’s life, no studies have examined how being admitted to the hospital due to one impacts the quality of life of children in the long term, leading researchers in the Netherlands to analyze data from 94 children, ages 8-18, who were diagnosed with SCD at the Amsterdam University Medical Centers.

Health-related quality of life (HRQoL) was measured annually as part of standard care using the Pediatric Quality of Life (PedsQL) Inventory 4.0 Generic core scales. Composed of 23 questions, the patient-report questionnaire assesses four domains: physical, emotional, social, and school functioning.

Over a median follow-up time of four years, 37 children were hospitalized at least once due to a VOC. The children had significantly lower scores on their PedsQL assessments than patients who didn’t require hospitalization, and scores on the physical functioning domain were significantly reduced.

The researchers evaluated how being hospitalized impacted quality of life over time and assessments were repeated every three months for up to a year after a hospital stay. Hospitalizations resulted in lower quality of life scores across all assessments, although the impact tended to diminish over time, data showed.

Changes in quality of life over time

Specifically, patients had a 4.8-point reduction in their quality of life scores three months after a crisis compared with children who weren’t hospitalized. These differences dropped to 4.2 at six months, 3.6 at nine months, and 3.2 after a year.

“This study showed that the negative impact of hospitalization in children with SCD persists at least up to 12 months,” the researchers wrote.

This trend also was observed across the multiple PedsQL domains, except for physical functioning, where the greatest impact of a hospitalization was observed at six months.

Hospitalizations also had a cumulative effect on quality of life and each admission over 12 months was linked with a 2.3-point reduction in quality of life scores, physical function and school functioning being the most affected domains with reductions of 2.7 and 2.6 points for each new admission.

The findings suggest that, in children who require hospitalization due to a VOC, “close monitoring and psychosocial support aimed at all aspects of HRQoL, but in particular physical functioning (e.g., by offering physiotherapy), should be considered,” wrote the researchers, who said “sufficient attention” should also be paid to school functioning after frequent hospitalizations.