Summary

- by Dr. Frans Nollet, chairman of the scientific committee

Conference Post Polio Syndrome – A Challenge of Today
Copenhagen, Denmark, 31 August – 2 September 2011

Scope of the Conference

The primary aim of the conference was to bring patients, health care providers from different professions, and researchers together to find ways to improve care for polio survivors in Europe and to stimulate research in this area.

The conference was initiated by the European Polio Union, the umbrella organisation of 19 polio patient unions in 13 EU countries, and organized by the Danish Polio Society PTU. The program was decided by a joint committee of European researchers and EPU representatives.

The conference was attended by 330 participants from 25 countries from all continents. Half of them were patients, spouses and carers, and half health care providers and researchers. The program consisted of 21 sessions and included almost 70 lectures.

The conference atmosphere was excellent with high attendance of sessions. The opportunity to meet, exchange ideas and discuss between patients and professionals was highly appreciated and fruitful.

Main conclusions

Research

The most promising research area to the cause of post polio syndrome focuses on the role of inflammatory factors that may be related to persistence of poliovirus fragments in the genome. Based on this, intravenous immunoglobulines may be beneficial to arrest or reduce the loss in strength and functional decline due to post polio syndrome.
A recent Cochrane review concluded that the evidence for both pharmacological and rehabilitation interventions are insufficient and guidelines are based on limited levels of evidence.
Therefore, high quality research to the effectiveness of pharmacological and rehabilitation interventions are needed, including cost-effectiveness evaluations to facilitate implementation in health care systems.
Research interest needs to increase. Although research is being conducted in this area, the number of intervention studies in progress is scarce. Trial registries mention only one randomized study of rehabilitation interventions including health-cost evaluation.
Research is hampered by little research interest, based on the false notion that post-polio syndrome is irrelevant because polio is a disease of the past, and, as for many orphan diseases, by funding barriers to execute pharmacological studies.
The following specific priority topics for intervention studies were indentified:
1. Effectiveness of immunoglobulines needs to be confirmed. An international multicenter study is in preparation.
2. Effectiveness of multidisciplinary rehabilitation and its components such as exercise and psychological interventions.
3. Symptom management, especially to reduce fatigue and pain.
4. Interventions to reduce the high rate of falls and subsequent injuries; studies should include the prevention of osteoporosis in underdeveloped limbs.
5. Prevention of secondary damage to the locomotory system in aging polio survivors due to long term abnormal overloading of limbs.
6. To warrant healthy aging and to reduce the negative influence of multi morbidity and life style factors such as overweight and inactivity.
7. The effectiveness of orthotic innovations.

Care

Care should aim at societal participation at the highest functional level, and should be provided by interdisciplinary rehabilitation teams including the individual with post polio syndrome as full team member.
An inventory among 19 polio unions in 13 European countries revealed a lack of interest and knowledge in many countries and few specialized clinics and poor access to help. Yet, it is estimated that around 700.000 EU inhabitants will suffer from post polio syndrome.
To improve care provision in the EU, standards of care should be formulated and published.
Each EU country should have an expertise centre for post polio syndrome to improve care at the national level.

Networking

Post polio syndrome must be kept on the political agenda, as major health care issue in the EU, and is a major aim of the European Polio Union.
EPU will be strengthened by establishing a medical advisory board.
More national polio patient unions need to join the EPU and EPU may be instrumental in setting up patient union’s in European countries so far lacking such unions.
A professional European network of health care professionals and researchers with interest and expertise on post polio syndrome to improve care and facilitate research will be established and facilitated by EPU.
Priorities of the professional network are to establish diagnostic and therapeutic guidelines and to define a standard set of outcome measures for clinical research purposes.

Endemic countries

The WHO considers initiatives to improve rehabilitation care, especially in developing countries for the millions of people growing up and living with the lasting impairments of polio, to ensure that they can life full lives.
The knowledge on post polio syndrome in developed countries should be transferred to developing countries to seek ways to prevent post polio syndrome and the secondary damage due to physical overloading and to set up care for post polio syndrome that will also become a future issue in these countries.

Next Conference

The next conference will be held in 2 years, likely in Amsterdam.