Review: Chronic fatigue syndrome and quality of life, 2018, Roberts

[Andy]

Abstract: Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a challenging long-term condition (LTC) with complex and fluctuating symptoms. It is heterogeneous in presentation without diagnostic indicators; therefore, in health care encounters, insight must be gained from the patient’s perspective.

One indicator of impact can be gained by measuring quality of life (QoL). By applying a patient-reported outcome measure (PROM), professionals can gather insights with direct relevance to the patient questioned. Such a tool can act therapeutically tool to promote holistic and individualized professional interventions and interval measurement can inform commissioning of specialist services. Standard practice appears not fully to capture the experience of CFS, while a search of the literature turned up QoL patient-reported outcome tools, but failed to reveal a CFS/ME-specific measure.

The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units. An alternative, the World Health Organization’s quality-of life instrument (WHOQoL)-Bref26, is reviewed for relevance to the condition, measuring treatment outcomes and the wider debate of measuring QoL in LTCs.

Open access at https://www.dovepress.com/chronic-f...y-of-life-peer-reviewed-fulltext-article-PROM

 

[arewenearlythereyet]

hmmm. Whilst quality of life does need better definition, And listening to patients is important, I’m not sure this paper does very much to change the predominant obsession with mood and unhelpful beliefs as oppose to cognitive dysfunction and exertion intolerance being the main impacts to quality of life.

Mood and anxiety are fairly insignificant so why the overemphasis? Not a very balanced literature survey either since no mention of the fact that the current therapies are not successful.

I suppose there is a mild challenge to inadequacies to the chalder questionnaire nonsense and it does mention the importance of memory problems , but it is way off the mark in my opinion.

 

[Invisible Woman]

I know this is a review of data gathered through questionnaires, but I don't see how they don't see that the flippin' questionnaires are part of the problem, in my opinion.

The questionnaires do not necessarily capture the information that they are designed to elicit and, even if they do happen to design it right for a specific instance, it isn't necessarily appropriate to use it elsewhere.

Questionnaires are so easily biased, questions can often be misinterpreted by the patient because they are ambiguous, patients can be subtly coached etc., etc.

 

[Trish]

On the plus side she points out the some of the problems with CFQ and SF-36 to assess progress in CFS. On the down side , she suggests another questionnaire as the solution. Has she never heard of objective measures? And as others have said, why the obsession with mood.

 

[Hutan]

And as others have said, why the obsession with mood.

Not such a hard question. The clue is in what they are trying to measure things for:

The author explores a valid and reliable PROM that can monitor change and evaluate the UK National Institute of Clinical Excellence rehabilitation program, as delivered by specialist National Health Service units.

Clearly the rehabilitation isn't likely to fix your cognitive dysfunction or exertion intolerance. But it can change how happy you are about having those problems, at least as reported in a questionnaire.

 

[Dolphin]

I have now read this in full. I will post some comments but I should probably say that I didn't find this paper particularly exciting and I'm not even sure that any comments I have are that interesting. But I've read it, so thought I would post my comments and some extracts somewhere.

 

[Dolphin]

Approximately 15.4 million of the population in England report a long-term condition(LTC).1,2 Monitoring patients’ level of disability by assessing overall effect on quality of life (QoL) is regarded as essential by the author.3 A 2010 white paper4 emphasized the ability of patient-reported outcome measures (PROMs) to enhance LTC management, not to be confused with satisfaction surveys.5

I have read previously that satisfaction surveys can often give high scores so perhaps this is of use.

(Not ME/CFS-specific) "Patient Satisfaction Is Overrated"
https://forums.phoenixrising.me/ind...ific-patient-satisfaction-is-overrated.28961/

Results of single-item ratings or overall satisfaction surveys are over-optimistic and do not represent the true indication of care.

patients are notoriously satisfied (strong ceiling effects)

 

[Dolphin]

Nevertheless, the Medical Research Council6 and Reuben and Tinetti7 intimate that general tools may inadequately reflect experiences or the outcome of intervention in many LTCs.

 

[Dolphin]

NHS tertiary services, along with many other specialties, do not form part of The UK National Clinical Audit and Patient Outcomes Programme.12,13

 

[Dolphin]

She does highlight that the illness can have dramatic effects.

As CFS/ME is heterogeneous in nature and without medical or diagnostic markers, those with the illness are frequently disbelieved, despite the dramatic changes to functional abilities and emotional well-being.17

[..]

Despite fierce debate, there is a suggestion that physiological, neurological, and/ or autoimmune dysfunction combine to produce devastating physical, emotional, social, and economic consequences.21

 

[Dolphin]

This is a model she presents. I'm not convinced that the illness begins with such bad circadian rhythm dysregulation that it can be listed as a aetiological factor. Most people when they become ill will be working full-time or studying full-time outside the home and so will likely need to get up at the same time every day. So I'm not convinced a large percentage have the option of having a circadian rhythm dysfunction.

Also not convinced that severe muscle deconditioning occurs at the start as most people aren’t diagnosed for a long time and won't have the option to be very inactive. They will still likely be expected to work or study and/or deal with any childcare responsibilities.

Prior to the development of symptoms, patients most frequently report severe illness, surgery, accident, and/or physical and psychological or emotional trauma.22 Evidence exists that under the influence of such triggers, the condition begins with circadian rhythm dysregulation.23 A debilitating fatigue that is unlike everyday tiredness and not resolved by sleep or rest is reported, along with difficulties in memory and concentration.24 The developing sleep disorder results in daytime sleep, and the enforced rest rapidly develops into severe muscle deconditioning.25 Often described as the “payback phenomenon”, patients recount an increase in symptoms of myalgia, dizziness, and tachycardia.26 Although not fully understood, symptoms including nausea, muscle tension, and disruption to bowel and bladder function also occur. It appears that the autonomic nervous system and fight-or-flight response are more greatly activated as patients attempt to maintain their previous functional lifestyle and responsibilities levels.26 Sufferers experience a downward spiral of physical symptoms that can result in reactive anxiety and depression.27,28 Fenouillet et al29 confirms that pathogenesis appeare to be multifactorial.30

 

[Dolphin]

and mood through the Hospital Anxiety and Depression Scale (HADS).36 In common with other CFS specialists, the author suggests that HADS can confuse mood change with the results of fatigue.

 

[Dolphin]

However, the author finds the prescribed questionnaires time-consuming, with limited suitability as therapeutic tools. The measures do not explore social, leisure, or work domains to any degree, neglecting intimacy and a more detailed QoL assessment. The complexity of scoring and the national database design for CFS/ME PROMs results requires expert interpretation, which is no longer feasible to provide.

 

[Dolphin]

As qualitative analysis reveals ambiguities and fails to capture patient representation, the ability to report successful outcomes to influence the planning and commissioning of local health care services may prove inadequate.39

Where she is coming from

 

[Dolphin]

Endorsed by the NHS Outcomes Framework,40 measuring what is important to the patient is regarded as the most therapeutic approach.

Not much focus on this in a lot of the clinical trials or also the audits of CFS services.

 

[Barry]

As qualitative analysis reveals ambiguities and fails to capture patient representation, the ability to report successful outcomes to influence the planning and commissioning of local health care services may prove inadequate.39

Where she is coming from

I took it to mean that as qualitative analysis is wiffley waffley, it is very unreliable as input for determining health care services.

 

[Dolphin]

What are we trying to measure?
Endorsed by the NHS Outcomes Framework,40 measuring what is important to the patient is regarded as the most therapeutic approach. Along with practitioners in LTC management, CFS/ME specialists are seeking insight into symptoms and impact of the condition on function, health behavior, and capacity to self-manage.41 Devlin and Appleby42 observed that self-assessment of health and health-related QoL informed patient decision-making regarding treatment and lifestyle choices. There is increasing recognition of the need to understand personal experience of illness and patient needs better to foster shared decision-making.42

 

[Dolphin]

the author found that the PROMs utilized in prominent UK-based CFS/ME research generally measured the efficacy of cognitive, behavioral, and graded exercise therapies. The most consistently applied questionnaires were the Chalder Fatigue Questionnaire,31 full SF36,35 HADS,36 and the Clinical Global Impression scale.38 With such reputable and consistently reproducible findings, these results have been influential in formulating NICE guidelines and continue to inform NHS tertiary care.12,25,43,58

Showing what she believes.

Nevertheless, focus has centered on symptom description and reduction, rather than capturing QoL.

 

[Dolphin]

It fell to van Heck and Vries’s66 comparative study of QoL in healthy volunteers and those with CFS/ME to introduce the World Health Organization’s QoL instrument (WHOQoL) and specifically the brief version (Bref26).67,68 Despite being a further generic tool and one that left Schoofs et al69 with unanswered questions, there was applicability to the condition. Devised around the same time as the full SF36 and now revised to 26 items, the WHOQoL-Bref26 contains all the categories recommended by the BACME, with better clarity between emotional distress and self-esteem.35 General health self-assessment and sexual function are new concepts, while requesting perceptions of satisfaction with work capability, safety, and leisure pursuits gives greater insight. Energy is considered separately to sleep quality, and fatigue is not rated against prescriptive activities.

66. van Heck GL, Vries JD. Quality of life of patients with chronic fatigue syndrome. J Chronic Fatigue Syndr. 200;10(1):17–35.

I don't recall this paper being cited or referred to much so I have started a thread on it.
https://www.s4me.info/threads/quali...fatigue-syndrome-van-heck-de-vries-2002.5719/

 

[Dolphin]

WHOQOL Brief was used in this study. Again this rarely gets cited.

A national cross-sectional survey of diagnosed sufferers of myalgic encephalomyelitis/chronic fatigue syndrome: pathways to diagnosis, changes in quality of life and service priorities.

Comiskey C, Larkan F.

Ir J Med Sci. 2010 Dec;179(4):501-5. doi: 10.1007/s11845-010-0585-0. Epub 2010 Sep 26.

PMID:
20872086