Background and aims: PainData is an electronic internet-based clinical pain registry established to improve the understanding and treatment of high-impact chronic pain. The primary aim of this paper is to describe socio-demographics, pain characteristics, quality of life, and treatment values at baseline and follow-up in individuals referred to public and private interdisciplinary pain centers in Denmark between 2018 and 2020.
Methods: Self-reported patient-reported outcomes collected through PainData before (n=12,257) and after (n=4,111) treatment across 13 public and private interdisciplinary specialized pain centers in Denmark (87% of all pain centers in Denmark) are described.
Results: Mean duration of pain was 10 years, and one in three patients reported chronic widespread pain. More than 40% reported opioid use, and 50% had tried four or more different treatment modalities prior to referral. More than 60% reported poor sleep, severe fatigue, and memory and/or concentration deficits. Mean scores on pain catastrophizing, fear of movement, and pain-related disability were high, whereas scores on pain acceptance and self-efficacy were low. Physical and mental health were rated as poor and fair, respectively. One in four patients reported being very much improved or much improved after treatment. Items commonly reported after treatment were increased knowledge about pain, emotions and mood (66.5%), being better at accepting life with chronic pain (63.1%), and improved activity pacing (60.6%).
Conclusion: The PainData registry, containing data from a large cohort of individuals, can help to improve the understanding and treatment of high-impact chronic pain, and collaborations with other researchers are welcome.
Keywords: PainData; chronic pain; questionnaires; registry.
© 2021 Vaegter et al.