What matters to people with persistent pain?

I’ve read many written expectations of people coming for pain management – and without a doubt, the majority of people want to get on with life, go back to doing what they enjoy, and feel better in themselves. The only problem with that? Most of them preface their goals with ‘reduce my pain so I can…’, or words to that effect. And the reality is that for many of them, that particular goal is frustratingly difficult to achieve.

I would think that most clinicians working in pain management want to practice patient-centred care – but what is it that patients really want when pain can’t be completely eliminated? Luckily for us (maybe), the team developing the IMMPACT (Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials) recommendations have taken the time to “obtain the perspectives of individuals with chronic pain regarding what they consider the most relevant and important outcomes of treatments for chronic pain.”

The way they went about this was to ask people – radical huh?! Seriously, they recruited people to participate in focus groups from a number of clinics providing pain treatment, including cancer treatment.  Four separate focus groups were held with 31 people,  discussing symptoms of pain, impact of pain on daily life, and experiences with treatments.  These groups were moderated and structured using questions designed to keep participants talking about pain (and not straying off topic!).

Once these groups had been held, the discussions were analysed using content analysis, and an item pool of outcomes relevant to individuals who have chronic pain were drawn up.  These statements were then rated in a web-based survey to identify the degree of importance of each one, and participants in the survey also completed several other standardised questionnaires to help determine their general pain status (this also helps us as clinicians determine whether the people in the survey ‘look like’ the type of people we see – a nice touch!).

What did they find?

The key domains discussed in the focus groups were general pain symptoms; physical activities; family life; social/recreational activities; and emotional wellbeing.

The statements used in the web-based study were these:

1. Falling asleep at night
2. Staying asleep at night
3. Sex life
4. Taking care of family such as children, spouses, parents or other relatives
5. Relations with family, relatives or significant others
6. Relations with friends
7. Employment
8. Household activities (cleaning cooking, running errands)
9. Planning activities
10. Participating in family events/activities
11. Participating in recreational and social activities
12. Physical activities (walking, climbing stairs, bending, squatting, lifting)
13. Hobbies
14. Enjoyment of life
15. Emotional well-being (feeling sad, depressed, less motivated)
16. Fatigue, feeling tired
17. Weakness
18. Difficulty concentrating
19. Difficulty remembering things

Quite a list!  And not surprising really – what is interesting is how well (or not) we currently measure these aspects of life.  This has enormous relevance for us as clinicians – note how highly valued home and family responsibilities are, and how poorly we currently measure these areas.  This was commented upon by a group of researchers looking at how well our disability measures match with the ICF domains – we really don’t assess family and community participation very well.

In the pain management centre where I work, we are reviewing our outcome measures.  I reflected to the team the somewhat pitiful measures we have to assess functional ability (and disability).  Currently we use a 10 – item measure with an 11 point likert-type scale.  Each domain of functioning is weighted equally, so self care (which includes breathing, sleeping, eating) is just as important as sexual activity which is just as important as work.  Does that really reflect the value you and I would place on each area?  And this measure tends not to be responsive to change, particularly improved functioning, and also has both a ceiling and a floor effect.  In other words, it doesn’t measure very high levels of disability, or very low levels of disability particularly well.

Maybe it’s time to begin developing a patient-centred set of functional outcomes, where the weighting given to individual items reflects the degree of value people place on these activities.  While it’s always going to be different for individuals, the results in this study showed quite consistent ratings of importance across age and pain diagnosis.

Should all treatments be measured against these patient-centred outcomes?

Well, the authors of this study suggest no, it would be unrealistic for an analgesic to affect every area of functioning.  On the other hand, maybe if we can work to identify treatments that do target these important areas of functioning, we might help people feel better and live a life that meets their needs and expectations.


Turk, D., Dworkin, R., Revicki, D., Harding, G., Burke, L., Cella, D., Cleeland, C., Cowan, P., Farrar, J., & Hertz, S. (2008). Identifying important outcome domains for chronic pain clinical trials: An IMMPACT survey of people with pain Pain, 137 (2), 276-285 DOI: 10.1016/j.pain.2007.09.002


  1. I am wondering if as a supporting ‘tool’ for introspection for patients in identifying and ranking
    what functional capacities are most important to them a SPREADSHEET originally developed by Political Science professor David Welch and described in his book “Decisions, Decisions: the Art of Effective Decision Making” might
    be adapted, particularly if patients were making decisions about which therapy might be most effective for
    helping them achieve their self -identified goals. Here is the link to the website with the spreadsheet tool.

    I do like the research design described in the paper above as a very focused “focus group.’ No veering off-topic to discuss earthquakes or soccer scores 🙂

    1. What’s wrong with soccer scores? I can understand earthquakes being off-topic, but soccer!! I mean, it’s the beautiful game!
      Seriously, it does make a difference to have a really well-facilitated focus group, and I think they achieved this through thinking carefully about the intended purpose of the study, and making sure enough background work on topic headings etc had been done.
      Thanks for the link to the ‘decision helper’ I will have a look and put a formal link up! One of the problems is that many people find it hard to focus on intermediate or long-term goals, and their goals change on the basis of what is happening in the here and now…one good reason for doing assessments and taking questionnaire responses as part of the ‘intake’ assessment, so we can track what happens over time.
      Thanks for taking the time to comment! cheers Bronnie

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