Chronic disease management – follow-up and support needs from Diabetes – is this a model for Pain?
Self management for chronic pain is not the only area in which self management has been introduced. Heart disease, obesity and diabetes are all very commonly managed with a combination of biomedical and self management strategies. While reviewing different ways to provide support for people who have newly developed coping strategies, I have found a fairly limited number of studies directly examining varying options for providing follow-up. This paper by Fisher, Brownson, O’Toole and Anwuri (2007), while not an empirical study itself, does draw on the experiences of fourteen self management programmes for diabetes management that have been studied under the auspices of the Diabetes Initiative of the Robert Wood Johnson Foundation in St Louis, Missouri. I’m not suggesting that pain management is directly comparable with diabetes, but there are certain similarities that might help guide follow-up.

Why is follow-up information so difficult to find? Well, as the authors of this paper indicate, health services often provide ‘assistance and support only in times of trouble but not the follow-up and support to aovid future trouble.’ Research studies are often in a hurry to publish something positive about their outcomes – so long-term outcome studies are both expensive, and quite difficult to achieve. Participant drop-out rates become very much higher the longer since the original input. At the same time, psychology has been very clear for years (this papers suggests over 100 years actually!) that behaviour must be reinforced to be sustained, so there is a strong need to identify different ways to provide support, and to do so in a cost-effective manner.

What should support and follow-up actually do?
The functions of follow-up are suggested by Fisher, Brownson, O’Toole and Anwuri to be:
Monitoring health status such as presence or severity of symptoms of complications, blood sugar levels, weight and so on. In pain management I think it is equally important to review reported function, use of medications and any side effects, and comorbid diagnoses such as depression, anxiety and so on.
Encouragement and facilitation of regular care. In pain management, this could be about maintaining contact with the health care provider such as the GP, especially in individuals with comorbidities (although I’ll discuss this below)
Encouragement and motivation for progress and continued self management. The authors quote several studies demonstrating that simple contact with others can be highly reinforcing – and that contact can be as simple as a letter, phone call or visit.
Facilitating skills and problem solving for coping as situations change. Refining plans, learning new skills as necessary, and refreshing old skills. I can’t see much difference between these ideas and those needed to maintain pain management!

Several characteristics for follow-up are identified in this paper, and may be helpful for us working in pain management.

  1. On demand – support needs to be ‘readily and conveniently available through channels that are attractive to the individual’. Now this can be somewhat problematic in pain management, because people often seek support when they’re feeling distressed.  One good way to reinforce distress is to respond to it and ‘solve the problem’.  So perhaps this ‘on demand’ characteristic might need to be tempered with a more planned approach.  Some of the suggestions from the diabetes research included ‘breakfast clubs’, community based open meetings, talking circles (based on Native American culture – what about Marae-based powhiri or hui?), an annual party or gathering for friends and family.  We have the twice weekly pool sessions for people who have ‘graduated’ from the Pain Management Centre – a relaxed atmosphere where people can share solutions and successes.
  2. Proactive – contact needs to be maintained with those who ‘fall through the cracks’. Proactive contact communicates interest and concern – but it also needs to be low-key, non-intrusive and ‘honest’.  By this I mean, it does need to be more than one of those ‘courtesy calls’ you can get from telecommunications providers or utilities providers!
  3. Personal connection – some sense of continuity is needed, so that people can really trust the follow-up with their disappointments, and be ready to acknowledge slip-ups. In pain management, I sometimes wonder whether people feel they can honestly tell us that they’ve lapsed in their self management.  Until they trust us enough to admit failure, they’re going to feel judged and unable to access help to work their way out of their slip-up.
  4. Motivational – encouragement to keep on with what’s working. Maybe it’s a hangover from our initial training, but I do think sometimes we feel redundant if the person we’re working with has all the answers – like ‘what am I supposed to do with them?!’.  After seeing one person at follow-up today, I can tell you there is nothing better than to hear that a person has faced a challenge and has found a way out of it.
  5. Consistency in key messages – using the same language, using the same self management model. Now I think this is the area that causes the most trouble in pain management.  Many of the people who progress through a pain management programme get to see other health providers either as part of their involvement with ACC, or when they return to their GP.  If the next provider they see uses another model of pain management, or doesn’t support self management and instead suggests another round of assessment, more procedures, a new drug or exercise, the chances the person is going to maintain self management goes down.   Even using the same words in the same way – I mean, what does ‘pacing’ actually mean?
  6. Not limited to ‘diabetes’ – well in pain management, we need to always consider the person and his or her own life and context. Talking about pain management means thinking about how the person is doing in their relationships, their work, their diet and their exercise.  Mood, diet, other health problems – these are all important and relevant to self management of pain.  Not that we can ‘do everything’ – but we can and should incorporate as much ‘wellbeing’ as we can into follow-ups. After all, is pain management really any different from living a ‘good life’?
  7. Including a wide range of resources and settings – why on earth do we need to have follow-ups in a clinic? What’s wrong with extending to newspapers, churches, gyms, health spa’s – you know what I mean!    Again, if self managing pain is pared down to the basics, it really is about ‘living well’.

The problem I have with follow-up is the problem of people returning to health care as ‘patients’ rather than as people.  Each time a person with chronic pain re-engages with the health care ‘system’ they run the risk of thinking about themselves as patients who need ‘care.’  Especially if the follow-up provider doesn’t buy into the self management model.

What are your thoughts on self management and ongoing contact with the health care system?  Is self management about being in an ongoing relationship with a health care team, in order to remain ‘well’?  Or is it about accessing what is needed, when it’s needed and the rest of the time being independent of health care?  Do we define health as the ‘absence of disease’, or as the presence of engaging in a healthy life that is moving toward goals based on what the person believes is important?  If we use a self management model, at what point do we change our language to reflect this?

Fisher, E., Brownson, C., O’Toole, M., & Anwuri, V. (2007). Ongoing Follow-up and Support for Chronic Disease Management in the Robert Wood Johnson Foundation Diabetes Initiative The Diabetes Educator, 33 (Supplement 6), 201-207 DOI: 10.1177/0145721707304189



  1. Finally, someone is looking at this. I have been thinking about this for the last couple of years. I have RSD/CRPS and have felt there needs to be an educational com[ponent to help patients manage their pain. I have used diabetes as an example of patient education program. I think having this educational component would improve the lives of chronic pain sufferers

    1. Reta you’ll be glad to hear that almost all the latest information on CRPS indicates that the more information people have, the better they are. All of our pain management programmes (as opposed to pain reduction programmes) have an ‘education’ approach – but of course it’s much more than simply being given information, it’s making sense of that information in your own life that’s the most important part.
      I also think people need ‘refresher’ courses periodically – even if just to acknowledge that you’re doing a great job and there’s nothing new to add!
      Thanks for taking the time to comment, it’s a pleasure to have your input.

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