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"Non-compliance or client control?" (Fiveash, 1998)

Tom Kindlon

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Tom Kindlon

Senior Member
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1,734
Although it hasn't been explored too much in the literature, I think compliance and adherence is important in terms of activity and exercise programmes.

I discuss this a bit in my paper:

"Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"

Free at: http://iacfsme.org/BULLETINFALL2011/Fall2011KindlonHarmsPaperABSTRACT/tabid/501/Default.aspx

People with ME/CFS may have come across it in other situations e.g. not continuing taking a drug because of apparent adverse effects.
 
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This paper questions whether it is that the client who is non-compliant with the health professional's treatment or whether it is the health professional who is non-compliant with the client's goals.
A great place to start - CBT/GET practitioners could learn a lot from examining this question. How are they helping us by getting us to answer questionnaires better when objective physical disability doesn't improve at all in the process? Do they really think that's what we want? Or do they even care?
 

Tom Kindlon

Senior Member
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In a qualitative study of 54 outpatients with inflammatory arthropathy, they found that patients balanced the costs and risks against the benefits, taking into consideration an analysis of their personal, financial and social circumstances. Decisions were based on rational action rather than a wish not to comply with doctor's requests.

Unfortunately this study isn't open-access and I can't find a free copy.

http://www.sciencedirect.com/science/article/pii/0277953692902066 Social Science & Medicine
Volume 34, Issue 5, March 1992, Pages 507–513
Patient non-compliance: Deviance or reasoned decision-making?
Jenny L. Donovan1, David R. Blake2

I had this these sorts of issues in mind when I wrote this section in my paper (link above):


5.6 Measure non-physical harms / patient-oriented outcomes pertaining to quality of life

Aside from any possible "direct" biological harm from increased activity/exercise, other "indirect" harms, such as psychological, social, and economic harms (181), are also possible. The magnitude of a harm can be judged by the effect it has on someone's ability to pursue life goals and the duration of this interference (182). A distinction can be made between interfering with minor (e.g. visit a museum, meet friends, vacation, etc.) and major (e.g. attend school, work, have children, etc.) life goals. GET and GA-based CBT programs involve large commitments of time and energy which might interfere with the pursuit of both minor and major life goals by some participants. Given the post-exertional symptoms that are part of ME/CFS (59,183), effects may not just be experienced during the activity sessions and since such programs may not involve an increase in total activity levels, other activities are presumably being substituted for (184). This could put a strain on individuals with ME/CFS in terms of their ability to perform other roles, like employee, student, partner, and/or parent.

Even if eventually an increased total activity level was achieved, there is likely to be a transitory period where a reduced amount of time and energy is available for other aspects of one’s life. This could potentially lead to increased social isolation and, in particular, the break-down of relationships (i.e. have a long-term, rather than just temporary, effect). Outside the ME/CFS arena, it has been recognised that psychosocial treatments can have negative effects on family functioning (185).

In terms of education, a student's academic performance could suffer due to the cognitive problems which can occur post-exercise (171,179): they might underperform or fail exams, or simply fall too far behind and drop out.

In the employment realm, an employee might lose their job because an employer was not satisfied with their performance. In Belgium, an audit of five rehabilitation centres for CFS that involved CBT and GET (66-68) found that the average hours working decreased at conclusion and at follow-up six months later compared to the start. In addition, more people (10%) decreased the number of hours they worked than increased (6%). In fact, when one notes that only 27% were employed before the program, it means 37% (=10/27) of the participants decreased how much they worked (which would have included stopping). A Dutch study of CBT reported better results, with the number of hours worked increasing from a mean (median) of 9.4 (0) hours to 11.4 (0) hours (186). No data was available on the number of people whose hours worked had decreased; however, the mean (median) number of contract hours (cf. hours actually worked) decreased from 16.2 (10) hours to 14.9 (7) hours.

So, even if it were the case that there were no biological harms associated with GET and CBT, individuals with ME/CFS or their physicians could believe that the potential for these secondary or indirect harms might mean that the treatment is not suitable for a specific individual at a particular time.

As is often the case when harms are being recorded, specific checklists may need to be developed that assess some iatrogenic effects – in this case non-biological harms. Spontaneous reporting of harms may not pick up some unintended consequences. Additionally, a greater use could be made of patient-oriented outcome measures. Some might claim that the SF-36 questionnaire (187) would be suitable. However, criticisms have been made that it covers few fields of functional limitation and that several questions cover the same field (two items on “stairs” and three items on “walking”) (188). These five questions make up 50% of the physical functioning subscale which is sometimes used on its own in ME/CFS trials. Given the nature of GE/GA/CBT programs, this may not be a suitable tool to measure functional impairment when assessing such interventions.

ME/CFS studies have found apparent improvements using this subscale without any actual increase in total physical activity (184,189) or a difference with the control group on this instrument was recorded despite no difference in actigraphy (147,190-192). A similar phenomenon has been observed with fatigue scales where an improvement in (self-reported) fatigue scores did not correspond with increased activity (147,184,189,192). Indeed, a recent systematic review of patient-reported outcome measures (PROMs) confirmed that the quality and acceptability of those that have been used in ME/CFS studies as “limited ... [as] [c]lear discrepancies exist between what is measured in research and how patients define their experience of CFS/ME. Future PROM development/evaluation must seek to involve patients more collaboratively to measure outcomes of importance using relevant and credible methods of assessment.”(193)
 

Tom Kindlon

Senior Member
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This issue is closely related to coercion e.g. being forced to do a CBT/Graded Activity/GET programme by an insurance company (for example), or in a hospital.
 

Tom Kindlon

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As I mention above, it's only a short article (701 words including references in brackets), and I think is reasonably easy to read but for anyone who doesn't want to read it all, here are some extracts I thought were useful/interesting:

Health care professionals have viewed non-compliance as the fault of the client: an error in their decision making.
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When the goals of health care is determined by the client and the treatment is offered rather than ordered and the client has the power and the opportunity to re-negotiate a health care program more congruent with their own needs
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the nurse* should not have that degree of control, authority and power over clients.

* it was a nursing journal, but nurse could be substituted for any health or medical professional
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It ends:
It is the client who should have control and ownership of their body and health and only they should decide whether or not the health care meets their needs. It is inappropriate for the nurses to believe that they are the experts on the patient's health and that the client should comply with their world view (Wright & Levac, 1992). The underlying assumption here that needs challenging is that the nurse has the true view of the world (Holm, 1993). Non-compliance is parentalistic behaviour on the part of the nurse. Rather than blaming the client for being non-compliant, it is the nurse who is being non-compliant in respect to the client's goals (Holm, 1993).
 

Tom Kindlon

Senior Member
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Incidentally, Barb Fiveash I believe is Dr. Barb Fiveash, author of "From Chronic Fatigue, Fibromyalgia & IBS to Multisystem Dysregulation"
 

user9876

Senior Member
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4,556
There is another aspect of compliance/non-compliance that is talked about in different subjects which is around how hard it is to be compliant.

Give people tasks that are too hard or just too many tasks (compliance budget) and they will fail to comply. The fault then is with those looking to gain compliance (i.e. those designing treatment plans). So my guess is that many patients don't comply with GET if they are told to push past their limits or carry on when they have a relapse. Of course people don't like to admit to being non compliant so therapists may not realise.
 

Simon

Senior Member
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Location
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Interesting stuff indeed.

It is the client who should have control and ownership of their body and health and only they should decide whether or not the health care meets their needs. It is inappropriate for the nurses to believe that they are the experts on the patient's health and that the client should comply with their world view (Wright & Levac, 1992). The underlying assumption here that needs challenging is that the nurse has the true view of the world (Holm, 1993).
Some more recent developments chime with this (see patient revolution blog)

And this comes from the BMJ editorial this year "Let the Patient Revolution begin"
BMJ Editorial said:
Far more than clinicians, patients understand the realities of their condition, the impact of disease and its treatment on their lives...

Also relevant are e-patients, empowered patients, typified by 'e-patient Dave' (Dave deBronkart) who said that the idea originated with
...Tom Ferguson, medical editor of the hippy Whole Earth Catalogue. Tom pointed out in the 1970s that most healthcare consists of healthy people looking after themselves, but somehow when people become ill, their healthcare is all down to someone else. So he coined the word e-patient, who he called Equipped, Enabled, Empowered and Engaged (to which others have added Equals and Expert), to describe patients actively engaged in treating their disease.
That's actively engaged, but not merely carrying out instructions. e-patient Dave had given a TED talk and penned a recent article for the BMJ, so this is very current.