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Managing patient expectations about chronic pain

Student: Neela Bhana
Supervisors: Dr Lee Thompson, Dr John Alchin, Bronwyn Thompson
Sponsor: University of Otago Divisional Scholarships

Lay Report 

Chronic pain is that which exists beyond the normal period of healing, which is considered pain that is experienced beyond six months. Chronic pain conditions include phantom limb pain, fibromyalgia and central pain syndromes. These conditions impact on sleep patterns, physical functionality, the ability to complete daily tasks, social relationships, mental wellbeing and overall quality of life.

In New Zealand, one in six individuals may experience chronic pain. Chronic pain is rarely able to be completely cured or eliminated and for many patients, accepting this reality may be as difficult as coping with their pain. As a result, many patients exhibit resistance to the idea of pain management as opposed to treatment as they believe, based on their understandings of modern medicine, that something could and should be done about their condition.

Pain management is based on a biopsychosocial model; that is, a team of health professionals including doctors, occupational therapists, physiotherapists, psychologists, nurses and social workers work together to address the physical, mental, social and cultural aspects of pain to better the patients' understanding of their condition and enable the development of self-management skills.

This is precisely the approach employed by the Canterbury District Health Board Pain Management Centre (PMC) based at Burwood Hospital. On referral to the Centre from Accident Compensation Corporation (ACC) or Ministry of Health channels, patients complete a comprehensive questionnaire regarding their pain experience. Patients are asked to provide a free-text response to the question “What are your main goals or reasons for attending the Pain Management Centre?”.

Previous research suggests that these types of free-text comments may provide valuable information regarding patients’ pain experiences which differ between individuals based on their biological, social and cultural environments. Evidence suggests that these pain experiences shape the expectations individuals have for treatment and recovery and in turn may predict health outcomes.

The aims of this study were firstly to analyse the comments patients provided on their questionnaires to enhance understanding of the expectations they brought with them when attending the PMC and secondly, to develop ways to manage these expectations in order to facilitate better patient outcomes.

A random sample of 250 questionnaires was selected and analysed using ethnographic content analysis. For this method of qualitative analysis, responses were transcribed verbatim and emerging key words were coded, categorised and further organised into overarching themes describing the expectations patients had regarding the treatment of their chronic pain.

Five overarching themes and nine sub-themes emerged as follows:

  1. Pain Experience   i) Living with pain   ii) Living a pain free-life
  2. Medication   i) Use   ii) Alternatives   iii) Long-term effects
  3. Enhance Understanding of Condition
  4. Regain Sense of “Normality”   i) Physical functionality   ii) Social functionality
  5. Mental/Emotional Impact of Condition   i) On self   ii) On other relations.

Depending on their level of acceptance of chronic pain as a long-term condition, patients expected that attending PMC would enable them to live a life with pain or live a pain-free life. There was also the expectation that concerns regarding medication use, alternative prescriptions or therapies, and the long-term effects of medication use would be discussed, and that more information regarding the cause, triggers and solutions for their condition would be provided. By addressing their pain experience with treatment or management options, patients expected that this would in turn enable them to regain physical functionality, sensible sleep patterns, employment and education opportunities, social relationships and improved mental and emotional wellbeing for themselves and their significant others. All of these factors were referred to by the patients as essential elements to regaining a sense of “normality” which they had lost since their pain experiences began. A selection of patient comments are provided below:

“To be pain free so that I can feel like I used to and enjoy a good, normal, full life. At least to learn to manage the pain so that it doesn’t stop me from living a normal life like it does now”

“Understand why my lower back is grindy rather than flexing smoothly… get realistic expectations for coping with a munted back… isolate objective facts about back injuries”

“The fact I do not know what causes my pain and have received differing diagnoses makes it harder to understand for myself and others. I have had no significant recent injury/illness therefore have found treatment/pain management very difficult”

“I want to be happier and have a more positive outlook while coping on a daily basis. I find it difficult that I live with pain that no one can see. There is no sign of it. It is never the same from one day to the next. It makes you question whether it is real. I lived with this for 12 years and feel like I only make baby-steps of progress. I feel like a 27 year-old trapped in a 75-year-old body”

“To get my pain to a low level or pain-free so that I can do what I want to do when I want to do it. I want to be pain-free!”

Current biopsychosocial pain management strategies have proven effective. However, incorporating the specific treatment expectations that patients have on attending PMC is essential to further facilitate positive patient outcomes. To do so, further research in the field is required along with the development of tools and guidelines for pain management specialists to ensure these expectations are met and managed.