Sunday, September 05, 2010

Welcome to PainSTORY - Pain Study Tracking Ongoing Responses for a Year


  • We recruited patients who were suffering from moderate to severe chronic pain, eg osteoarthritis, back pain/lower back pain, osteoporosis, neuropathic pain, mixed pain, or other long-term pain. For more information on types of pain, see the Patient Resources.
  • For 12 months, we followed the lives of participants, recording information about what types of pain people were feeling, who they had consulted for help and what treatments were offered.
  • Over the year, the participants recorded their pain journey experience. They made diary notes and illustrations that demonstrated not only their physical pain, but also their emotional pain. They described how chronic pain was impacting on their lives, affecting relationships with friends and family, their jobs and social lives.
The results of the PainSTORY survey demonstrate that chronic pain has a significant impact on patients' quality of life, highlighting the need for improved pain management.
Despite 1 year of treatment...
  • 6 in 10 patients feel that chronic pain controls their life.
  • 95% of patients report they are suffering moderate to severe pain.
  • 19% of patients feel that their pain is getting worse.
And yet...
  • 64% of patients believe that they are on the most appropriate treatment.
  • Over half feel that everything possible is being done to help them.
  • Only 12% are being prescribed a strong opioid medication to control their pain.
A 1-year journey through pain
By the end of the 12-month survey, 95% of patients undergoing treatment reported being inmoderate or severe pain, with 46% of this group suffering severe pain by the end of the year. For the majority of patients, pain levels had not improved dramatically despite medical intervention for 1 year.
Although patients' pain remained relatively static throughout the year, daily symptoms of pain fluctuated, leading to frustrating consequences.
Impact of pain on daily life
The study findings highlight the significant impact that chronic pain has on the daily lives of patients. Over half of patients still feel pain has a 'huge' impact on their daily life at the end of the study, with 6 in 10 reporting that chronic pain controls their life.
8 in 10 respondents confirm that their pain has an impact on their quality of life, with:
  • 64% reporting problems walking.
  • 30% reporting problems washing and dressing.
  • 60% reporting problems sleeping.
  • 73% of patients reporting problems with everyday activities such as housework or family/leisure pursuits.
  • 44% exercising less because of their pain.
Patients also highlight increasing challenges associated with childcare, with 53% reportingdifficulties in looking after children at the end of the research compared to 47% at the beginning.
The survey reveals that pain has a significant impact on patients' ability to work: 65% worry that their pain will mean they have to stop work completely, 38% claim they have had to change the way they work and 33% have had to reduce the hours they work.
The emotional impact of pain
The emotional impact of pain is just as detrimental as its physical impact. Across the year, 44%of patients report feeling alone in tackling their pain and two-thirds of patients feel anxious or depressed as a result of their pain. For 28% of patients, their pain is so bad that they sometimeswant to die. Patients report feeling trapped by a pain which may vary in intensity, but continuously affects every aspect of their life.
Results also highlight the impact that pain has on relationships with others. One-third of patients think people treat them differently and said they have fewer friends as a result of their pain.

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