Parents fear meningitis because of its potential to cause death and severe disability. For those who survive, the health, social and economic burden can be significant. A new Spanish study explored the impact of the disease on individuals and their families.
- More than 50% of patients who responded suffer ongoing physical effects of meningitis – mainly scars and amputations, limiting their job prospects
- Families provide around 20 hours per week of informal care to children
- The typical carer is a female relative, aged 39 years
- The economic cost is €11,050 per year, reaching more than €900,000 over a lifetime
- Awareness of vaccination, and which types of meningitis can be prevented, is low
Meningitis can be caused by viral or bacterial infections. Bacterial meningitis is more serious and can cause lasting damage. Immunisation can prevent several forms of meningitis. For example, vaccines targeting some meningococcal, pneumococcal, and Haemophilus influenzae type b (Hib) bacterial infections, along with the mumps vaccine, are used around the world to reduce the impact of meningitis.
However, the disease continues to cause death and illness, sometimes with long-term consequences. The new research was funded by the Spanish Association against Meningitis (AEM) and conducted by researchers at Grupo de Economía de la salud y gestión de servicios sanitarios (IDIVAL) to explore the financial, emotional and psychological impact of meningitis on families, along with the physical consequences of the disease. It surveyed meningitis survivors of all ages to ensure a holistic picture of the impact of the disease.
Lost job opportunities
The questionnaire, designed for patients and their relatives found that the typical profile for family caregivers is a female relative aged 39 years. In most cases, this is the child’s mother. At the time their child contracted the disease, 45% were working but today, that figure has fallen to 14%.
While the authors note that the current COVID-19 pandemic may have depressed employment rates among respondents, the study also found that parents spend approximately 20 hours per week providing care, limiting their capacity for full-time work.
Almost 55% of patients who responded to the survey reported ongoing physical consequences of meningitis, including amputation. This too affects their employment prospects. Around 60% require ongoing emotional support.
In addition to lost working time, families face increased costs associated with prostheses and rehabilitation, as well as higher than average transport costs. The researchers calculated the total economic burden of meningococcal disease (where patients have life-long needs) to be €11,050 per year. This can add up to €921,901.
‘This is the first time that a patients’ group in Spain has led a study of this kind,’ said Elena Moya, Vice President of AEM and Coordinator for Europe and Africa at the Confederation of Meningitis Organisations (CoMO). ‘The key outcome is that the overall cost of surviving the disease includes the emotional and psychological costs.’
She said that while data on the costs of care and prostheses are included, it is more difficult to value the pain, anxiety and suffering of patients and families.
‘But this study is a start: it helps to understand the full consequences, the whole range of sequelae caused by meningitis,’ said Moya. ‘These consequences are lived by parents and known to doctors, but we really need the study to be read by decision makers. We want them to implement all the vaccines that protect against meningitis into the national routine immunisation calendars.’
The survey asked families about meningitis prevention, particularly through vaccination. However, most respondents (70%) did not answer this question. The study found that 42% did not have the opportunity to be vaccinated against the disease, probably because vaccines against meningitis B are relatively new additions to immunisation schedules across Europe.
The findings are in line with those of a study published earlier this year by researchers in Australia, supported by CoMO. That paper explored the impact of meningitis B, showing that many survivors require ongoing medical treatment and support from allied health professionals for years after infection.
Their needs can range from physical care and prosthetic limbs to hearing and speech therapy. These challenges contribute to the economic health burden which the authors say point to the importance of prevention.
Separately, research in the UK supported by the Meningitis Research Foundation has looked at the cost to health and social services of caring for people who had severe cases of meningococcal disease. It showed life-times costs of care running well over £1 million.
The WHO is aiming to ‘defeat meningitis by 2030’ and has published a detailed roadmap for driving down the number of cases over the coming decade.