Patient change attributions in self-management of severe chronic fatigue syndrome

[Dolphin]

http://www.tandfonline.com/doi/full/10.1080/21641846.2017.1278634

Original Articles
Patient change attributions in self-management of severe chronic fatigue syndrome
J. L. Adamowicz, I. Caikauskaite, F. Friedberg & V. Seva
Pages 1-12 | Received 21 Jul 2016, Accepted 30 Dec 2016, Published online: 18 Jan 2017


ABSTRACT
Purpose: To identify patient change attributions arising from a home self-management intervention in severe chronic fatigue syndrome (CFS).

Methods: This multi-method study of 126 participants with severe CFS collected data through phone interviews at 3-month follow-up in a self-management trial reported previously. Patient ratings (ranging from very much worse to very much better), were elicited on the global impression of change scale followed by this question: ‘Why do you think you are: “worse”, “unchanged”, “improved”’, etc.? The open-ended responses from participants were thematically organized and analyzed as study data.

Results: Most improved participants referenced behavioral changes that included: increased relaxation, coping and stress reduction (44%), pacing (e.g. more rest, less exercise; 33%), and more physical activity/exercise (25%). For participants reporting ‘unchanged’ global ratings, the majority (63%) attributed their status to one or more of the following: nothing will help/illness acceptance/illness fluctuates without overall change (29%), everything is the same (24%) or does not know (17%). Participants with worsened global ratings most often attributed their decline to: changes in sleep (40.5%), deteriorating health (35%), specific life events (30%), and/or stress (30%). Treatment-assigned participants as compared to no treatment controls were significantly more likely (p = <.05) to cite increased awareness, relaxation/coping/stress reduction and pacing as their reasons for change. The frequency of active vs. passive coping categories also distinguished improved from non-improved patients.

Conclusions: Patient attributions could be utilized by the clinician to shift patient perceptions of their illness status in a constructive direction, possibly leading to an enhanced quality of life.

KEYWORDS: Chronic fatigue syndrome, attributions, global impression of change rating, self-management

 

[Dolphin]

In addition, the findings of this study can be related to the concept of self-serving biases wherein the tendency for failures (i.e. illness worsening) are attributed to external factors and success (i.e. illness improvement) are attributed to internal factors wherein [21].

I thought this was astute.

My impression from writing to thousands of people with ME/CFS, is that when people are much improved/better they are not very inclined to donate to ME/CFS. A big reason for this of course would be they don't have the self-interest. However I have wondered whether some of these people think that all people who remain ill need to do is do exactly what they did. The opposite viewpoint of this would be that the people improved were lucky or had something going for them e.g. an early diagnosis. My hope is when there is a better biological understanding of the condition, it will be clearer to more people that improving and particularly getting much better versus not improving is a lot to do with luck just as, say, it is with surviving cancer for example.

 

[Dolphin]

This seems plausible to me. The 2 groups got the same intervention except that the CTR used (i) pedometers and could see the results while the other group used actigraphs and couldn't see the results and (ii) the CTR group used paper diaries which they could look back on while the other group used web diaries that they couldn't look back on.

Improvement and participant self-awareness Of particular interest, 15% of FSM:CTR participants linked increased awareness to their PGIC rating of improvement, a near-significant difference when compared to FSM:ACT participants (p = .052). This increased awareness may be related to the patient’s direct knowledge of daily activity levels as reflected on their step counters and their fatigue ratings entered on paper diaries which could be monitored day to day, although these data collection methods were not a formal part of the intervention. Perhaps this explains in part the improved fatigue outcomes that were significant only for the FSM:CTR condition at three month follow-up as compared to the FSM:ACT condition which by comparison used web diaries and actigraphs that did not yield feedback to subjects about their daily fatigue and activity levels.

The apparently heightened ability of subjects in the FSM:CTR condition to self-monitor and potentially identify behavioral patterns over time in combination with self-management guidance contained in home-based materials may have led to more effective daily management and the relatively improved 3-month outcomes. Relevant to this finding, two diary-based feedback interventions in fibromyalgia [24,25] which generated interventional advice back to the participants found that compliance was associated with a greater frequency of clinically significant improvements.

 

[Dolphin]

Participant global impression of change = PGIC

Limitations

The study sample was very ill and likely not representative of the wide range of functioning of CFS patients as presented in medical care. In addition, the current study did not use objective measures to assess improvement and non-improvement, or evaluate objective measures to compare improvement versus non-improvement in participants. Also PGIC ratings at the end of the three month intervention period may have been affected by recall bias [13]. Finally, the clinical applicability of these findings to patient care has been proposed, but never formally studied.

 

[Snowdrop]

Having been struck with this illness I am made aware of just how much people in general and the medical community in particular tend to form beliefs that have no basis in fact as a way of explaining the unexplainable.

For people who are matched in age, ethnicity and a host of other variables a difference in survivability of say cancer may exist on the genetic level that has not yet been revealed. The interplay between groups of genes must create a vast amount of possibilities some of which act as protective. Psychology tends to fill the void causing all manner of harms in the process.

 

[Murph]

However I have wondered whether some of these people think that all people who remain ill need to do is do exactly what they did.

Whether you talk to people who climbed Mt Everest, made millions of dollars, won Olympic gold, or cured themselves of cancer using only nettles they're all inclined to say you need only do exactly what they did to achieve the same result.

An instinctively rigorous grasp of cause, effect and probability is not one of Homo Sapiens' strengths! People can't help themselves from drawing global lessons from local experience.

As a little hack to stay calm on the internet interpret : "To cure yourself all you need to do is this" as "this worked for me you guys, just FYI."

 

[Snow Leopard]

In addition, the current study did not use objective measures to assess improvement and non-improvement, or evaluate objective measures to compare improvement versus non-improvement in participants. Also PGIC ratings at the end of the three month intervention period may have been affected by recall bias [13]. Finally, the clinical applicability of these findings to patient care has been proposed, but never formally studied.

Sigh... So the difference in "improvement" could simply be greater optimism when reporting on the self-report questionnaires.