Pijnpatiënten naar één stem (One Voice for Pain Patients)
Hans Van Dongen, from PAE member association Pijnpatiënten naar één stem (One Voice for Pain Patients) shared for this edition of the PAE newsletter details about an important project meant to support chronic pain patients.
P.J.W.J. Hans van Dongen
This article outlines, from a patient perspective, an effective Standard of care for patients with chronic pain. It is important to explain how chronic pain develops, the types of chronic pain and how to manage it for the best outcomes. There is a need for better alignment in the treatment of chronic pain. Current treatments are commonly guided by healthcare professionals’ personal preferences. There is no consensus yet among healthcare professionals how to treat chronic pain and when to refer patients. All such issues have now been formalised in the Standard of care for chronic pain. Based on input from healthcare professionals as well as patient representatives, the focus is on chronic pain, education, self-management and evidence-based treatment options. Care should be delivered in a coordinated manner and according to the ‘stepped or matched care’ principles. Complementary and alternative care is also mentioned in the Standard of care. The official Standard includes an extensive reference list to substantiate its scientific nature. It was necessary for this standard to have a sound scientific basis in order to be endorsed by the many associations of healthcare professionals involved in chronic pain.
Why a version for patients?
How did patients contribute to this project?
This project was conceived in 2012 by Pijnpatiënten naar één stem (One Voice for Pain Patients), a collaboration of originally 5, and currently 18 patient associations (SWP, http://www.pijnpatientennaar1stem.nl/organisaties). In 2013 we joined forces with the Dutch Pain Society (DPS), a collaboration of individual healthcare professionals in the field of pain in the Netherlands.
SWP and DPS jointly formed a steering committee to oversee procedures and ensure financial accountability. The scientific team included two patient representatives, who co-authored the official version. They participated in the selection and review of the literature and in the decision process for the content of the official version. They also ensured the patient perspective was considered. The patient version was written under the responsibility of the SWP. The content of the patient version was approved by the (SWP and DPS) steering committee. The Standard of pain for patients with chronic pain is the intellectual property of both the DPS (50%) and the SWP (50%).
Q: How will you promote the project?
As Pijnpatiënten naar één stem, we were able to build an extensive network over the past years. This is a high-profile project within the network and within the associations of healthcare professionals involved in chronic pain. Additionally, regional implementation initiatives (living labs) were started in 5 regions. The living labs focus strongly on the stepped-care approach and multidisciplinary treatments. Multidisciplinary treatment indicates that doctors, paramedics and psychologists work together to give the proper care that the patient needs.
A national coordination group was initiated for the living labs, with regular alignment meetings for all participating regions. The SWP participates in the living labs and the coordination group.
Q: Is there a possibility to extend the knowledge you gained creating this document at the European level? How do you think we can share it with PAE colleagues or SIP members?
The best way to share the knowledge we gained at a European level is to translate the content. But translation alone is not enough. The situation in the Netherlands, with strong patient associations, cannot be compared with countries that lack such strong patient groups. As the Standard assumes an autonomous position of the patient with chronic pain, these patients must be recognised in other countries as an autonomous party and be supported in the 0th level, which is prevention and self-management.
The medical knowledge can be shared with healthcare professionals in Europe. Additionally, it is essential that all healthcare professionals involved in the treatment of chronic pain speak the same language and collaborate effectively.
Q: Specifically, what chronic pain conditions are addressed in the document?
The Standard’s central focus is on all types of pain, irrespective of the cause of the chronic pain. It is not about the treatment of one or a few types of chronic pain. Where the standard explains how chronic pain is treated, various chronic pain types are listed, such as tissue pain, nerve pain, and hypersensitivity. It also points out that chronic pain may develop as a result of a disease, an accident or as a disease itself.
Where the Standard explains how chronic pain develops, the role of biological, psychological and social factors is mentioned.
It emphasises the need for a simultaneous focus on all these aspects of the treatment of chronic pain – a so-called biopsychosocial approach.
In conclusion, the stepped-care principle is explained: not a standard waiting period of e.g. 3 months before patients are referred to more specialized care but making this dependent of the nature of the disease causing the pain.
Q: How can patients use this document?
It is important for patients to understand how chronic pain develops. As patients come to understand chronic pain better, we often see that their capacity to manage it is increased; for instance, that they are better able to respect their limits.
On the back of the patient version is a list of websites with tools that are available to patients with chronic pain. By publishing this patient version, we want to make it clear to patients that they should feel comfortable about making treatment decisions together with their healthcare professional, and that it is not only the healthcare professional’s responsibility.
Patient associations may suggest healthcare professional associations to start working in line with this Standard. As SWP, we hope to encourage more regions to become a living lab and adopt this Standard.