The impact of chronic pain—European patients’ perspective over 12 months

Background and methodsPain Study Tracking Ongoing Responses for a Year (PainSTORY) is a longitudinal study generating some quantitative and limited qualitative data concerning the experiences of individual patients with non-malignant chronic pain. Research was conducted across 13 European countries and a total of 294 patients completed the full evaluation process over 12 months. Adult patients (>18 years old) scoring >4 on an 11-point numeric pain rating scale (NRS-11) for most days during an average week were eligible. Four waves of interviews (W1–W4) were conducted over 12 months and information was recorded regarding pain levels, the impact of pain, pain treatment and treatment-associated side effects.ResultsAt 3 months, 95% of respondents rated their worst pain level over the past week as ≥4. Most respondents had felt this pain level for ≥1 year, with 47% of patients reporting NRS-11 scores of 8–10 for >2 years. At 12 months, 93% of respondents still rated their worst pain level over the past week as ≥4. The overall net percentage of respondents with ≥4 pain intensity did not change substantially over 12 months of follow up. However, 40% (119/294) of patients felt their current pain level increased and 41% (121/294) felt their current pain level decreased during this time, with just 18% (53/294) of respondents reporting no change (1% of respondents not stated). At 3 months, 30% of respondents reported being managed by a pain specialist within the last 3 months, decreasing to 13% 9–12 months later. Patients were typically taking a combination of prescribed and non-prescribed medications; approximately 10% at W1 and 14% at 12 months were prescribed a strong opioid. Among those whose current pain level decreased over the year, a slightly lower proportion of patients were taking prescription medication (78%) at 12 months than in either the group with no change to their current pain level (85%), or the group whose pain level increased over the 12 month period (87%). Pain negatively affected quality of life, with respondents reporting difficulties with daily activities, including sleeping, walking, family and social interaction. Approximately half of respondents taking prescription medication reported suffering from ‘constipation and associated symptoms’. In spite of no change in pain intensity, 51% of patients were happy with their pain management at W4.ConclusionsThe heavy individual and societal burden of uncontrolled chronic pain is demonstrated in this study. This silent epidemic has not attracted the focus of attention that it deserves. Despite the significant negative impact on individual quality of life, patients evolve to a position where they believe that chronic pain is inevitable and untreatable.ImplicationsIt is clear that there is a real need for a coordinated response by healthcare providers and planners across European countries. Minimum standards of care should be developed and implemented at national level. Healthcare professionals and students of these disciplines must be educated to recognise, assess and manage pain within a reasonable timeframe. Patients who are not responding to standard measures must have rapid and easy access to a comprehensive, inter-disciplinary pain service.

► Patients with moderate-severe chronic non-cancer pain were followed-upfor 1 year.
► 2/5 had more, 2/5 had less pain, all had major negative impacts on quality of their life.
► Still, 50% believed that everything possible had been done to manage their pain.
► Healthcare providers need education to manage better the huge burden of chronic pain.
► Patients need access to a pain service when standard measures in primary care fail.