Dataset Information

Left to themselves: Time to target chronic pain in childhood rare diseases.

ABSTRACT:

Background

Chronic pain is prevalent among patients with rare diseases (RDs). However, little is understood about how biopsychosocial mechanisms may be integrated in the unique set of clinical features and therapeutic challenges inherent in their pain conditions.

Methods

This review presents examples of major categories of RDs with particular pain conditions. In addition, we provide translational evidence on clinical and scientific rationale for psychosocially- and neurodevelopmentally-informed treatment of pain in RD patients.

Results

Neurobiological and functional overlap between various RD syndromes and pain states suggests amalgamation and mutual modulation of the respective conditions. Emotional sequelae could be construed as an emotional homologue of physical pain mediated via overlapping brain circuitry. Given their clearly defined genetic and molecular etiologies, RDs may serve as heuristic models for unraveling pathophysiological processes inherent in chronic pain.

Conclusions

Systematic evaluation of chronic pain in patients with RD contributes to sophisticated insight into both pain and their psychosocial correlates, which could transform treatment.

SUBMITTER: Sieberg CB

PROVIDER: S-EPMC8738995 | biostudies-literature | 2021 Jul

REPOSITORIES: biostudies-literature

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Publications

Left to themselves: Time to target chronic pain in childhood rare diseases.

Sieberg Christine B CB Lebel Alyssa A Silliman Erin E Holmes Scott S Borsook David D Elman Igor I

Neuroscience and biobehavioral reviews 20210324

<h4>Background</h4>Chronic pain is prevalent among patients with rare diseases (RDs). However, little is understood about how biopsychosocial mechanisms may be integrated in the unique set of clinical features and therapeutic challenges inherent in their pain conditions.<h4>Methods</h4>This review presents examples of major categories of RDs with particular pain conditions. In addition, we provide translational evidence on clinical and scientific rationale for psychosocially- and neurodevelopmen ...[more]

PMID: 33774086

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Project description:Legislative incentives enacted in Europe through the Regulation (EC) No. 141/2000 to incentivize orphan drug development have over the last 12 years constituted a powerful impetus toward R&D directed at the rare diseases population. However, despite therapeutic promises contained in these projects and significant economic impact linked to burgeoning R&D expenditures, the affordability and value of OMPs has become a topic of health policy debate in Europe fueled by the perception that OMPs have high acquisition costs, and by misconceptions around pricing dynamics and rare-diseases business models. In order to maintain sustainable patient access to new and innovative therapies, it is essential to address these misconceptions, and to ensure the successful continuation of a dynamic OMPs R&D within rare-diseases public health policy. Misconceptions abound regarding the pricing of rare diseases drugs and reflect a poor appreciation of the R&D model and the affordability and value of OMPs. Simulation of potential financial returns of small medium sized rare diseases companies focusing on high priced drugs show that their economic returns are likely to be close to their cost of capital. Research in rare diseases is a challenging endeavour characterised by high fixed costs in which companies accrue substantial costs for several years before potentially generating returns from the fruits of their investments. Although heavily dependent upon R&D capabilities of each individual company or R&D organization, continuous flow of R&D financial investment should allow industry to increasingly include efficiencies in research and development in cost considerations to its customers. Industry should also pro-actively work on facilitating development of a specific value based pricing approach to help understanding what constitute value in rare diseases. Policy makers must reward innovation based upon unmet need and patient outcome. Broader understanding by clinicians, the public, and policy makers of the complexity of clinical programs to deliver OMPs to market is required to better comprehend the decisions needed and made by industry. In parallel, an overt effort to consider the impact of public policies on R&D investments is key to enable policy makers to better reconcile the incentives provided by public policy decisions and companies investments decisions in a more positive manner.

Project description:BackgroundDespite the growing body of literature on posttraumatic stress disorder (PTSD) and chronic pain comorbidity, studies taking into account the role of childhood exposure to traumatic and adverse events remains minimal. Additionally, it has been well established that survivors of childhood trauma may develop more complex reactions that extend beyond those observed in PTSD, typically categorized as complex trauma or CPTSD. Given the recent introduction of CPTSD within diagnostic nomenclature, the aim of the present study is to describe associations between childhood trauma in relation to PTSD/CPTSD and pain outcomes in adults with chronic pain.MethodsFollowing PRSIMA guidelines, a systematic review was performed using the databases Pubmed, PsychInfo, Psychology and Behavioral Sciences Collection, and Web of Science. Articles in English or French that reported on childhood trauma, PTSD/CPTSD and pain outcomes in individuals with chronic pain were included. Titles and abstracts were screened by two authors independently and full texts were consequently evaluated and assessed on methodological quality using JBI checklist tools. Study design and sample characteristics, childhood trauma, PTSD/CPTSD, pain outcomes as well as author's recommendations for scientific research and clinical practice were extracted for analyses.ResultsOf the initial 295 search records, 13 studies were included in this review. Only four studies explicitly assessed links between trauma factors and pain symptoms in individuals with chronic pain. Findings highlight the long-term and complex impact of cumulative childhood maltreatment (e.g., abuse and neglect) on both PTSD/CPTSD and chronic pain outcomes in adulthood.ConclusionThis review contributes to current conceptual models of PTSD and chronic pain comorbidity, while adding to the role of childhood trauma and CPTSD. The need for clinical and translational pain research is emphasized to further support specialized PTSD/CPTSD treatment as well as trauma-informed pain management in routine care.

Dataset Information

Left to themselves: Time to target chronic pain in childhood rare diseases.

Background

Methods

Results

Conclusions

Publications

Left to themselves: Time to target chronic pain in childhood rare diseases.

Similar Datasets

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