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

[Dolphin]

I've started a thread on this paper:
https://www.s4me.info/threads/expec...the-whoqol-bref-skevington-mccrate-2012.5721/

Skevington and McCrate’s review of 27 disease groups and healthy controls with over 4,600 participants applied the WHOQoL-Bref26 to CFS/ME.68 A valid comparison to the SF36 was demonstrated, distinct QoL profiles gained, and greater sensitivity to change recorded. The Bref26 employs closed questions that gather quantitative responses, grouped into four domains. There are seven physical, six psychological, three social, and eight environmental descriptors to complete. QoL and health status are measured independently of the domains, with each question scoring 1–5. Skevington and McCrate68 report completion times ranged from 2–240 minutes, with an average 20 minutes per patient. Only 3% required assistance in their study. The findings demonstrated acceptability and feasibility of use.

68. Skevington SM, McCrate FM. Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQoL-Bref. Health Expect. 2012;15(1):49–62.

 

[Invisible Woman]

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

i have been asked about my sex life before in questionnaires - the correct answer is... Mind your own bl@@dy business.

 

[Trish]

... and sexual function are new concepts,

There was I thinking sexual function dated back to Adam and Eve...

or, was it 1963?

Sexual intercourse began
In nineteen sixty-three
(which was rather late for me) -
Between the end of the "Chatterley" ban
And the Beatles' first LP.
...

Philip Larkin
https://allpoetry.com/Annus-Mirabilis

 

[Dolphin]

The opportunity to document the illness experience in free text on the WHOQoL-Bref26 is thus a valuable indicator.

Interesting. It can be frustrating with most questionnaires where you can't add comment.

 

[Dolphin]

The author questions the categorizing of concentration as psychological, which the CFS specialist professionals would reclassify, regarding cognitive difficulties as physical and related to sleep disorder.3

3. Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis. 1991;13 Suppl 1:S8–S11.

The sentence started well but I question it has been proven the cognitive difficulties are related to sleep disorder.

 

[Dolphin]

Social inquiry is relatively limited in domain three of the WHOQoL-Bref26, with only three questions allocated. This contrasts sharply to responses patients give as they describe the isolation, lack of understanding, and loss of relationships that come with social limitation.25

 

[Dolphin]

QoL can be defined as an individuals’ perceptions of their life situation, related to culture, goals, and the value system they subscribe to.66

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

Sounds too much like Quality of Life scores could be changed by changing attitudes, goals, et cetera.

 

[Dolphin]

The questionnaire reviews the impact of pain on QoL, but asks whether the sensations stop what the informant needs to do, rather than what they would want to do, which may produce different results.

 

[Dolphin]

The impact of CFS/ME results in disruptions to productivity and meaningful occupation, which is often not the case with other conditions.25 Many are forced to give up work and interests, due to both physical and cognitive demands that cannot be sustained. As the workplace for many provides friendship, belonging, and identity, and significant loss and reduced self-worth is experienced.26 Greater understanding of these issues helps to dispel the misconception that CFS/ ME patients are malingerers.15 Nonetheless, modest attention is given in the WHOQoL-Bref26, with question 18 capturing satisfaction with capacity to work.

Inquires related to the physical environment, money, and leisure could also be seen to make tentative links to difficulties that have wide-reaching consequences.6

Seems reasonable, though I suppose it's going to be hard to find a questionnaire that asks everything and at the same time is not very long.

 

[Dolphin]

Relationships suffer, as fatigue prevents social contact and intimacy.68 The WHOQoL-Bref26 offers only three inquiries related to relationships and support. It does, nevertheless, offer clarity of just how limited interaction becomes by asking about sexual intimacy. The author reports that the inclusion of this question can cause a negative reaction for some respondents, who leave it blank or suggest this is not for discussion. This theme is echoed in sessions when an apology is often issued before approaching the issue with the therapist. This is a significant indicator of disability influencing QoL frequently neglected.

 

[Dolphin]

The paper does highlight how the illness affects quality of life in many ways, so I suppose it is useful that way though not new to most of us here.

 

[Dolphin]

As Dancey and Friend27 observed, the perception of not being taken seriously accounts in part for higher illness-worry scores, low meaning in life, and depression in CFS/ME, a causal relationship associated with feeling delegitimized.76

 

[Invisible Woman]

Right. So where you tell 'em you can't work, but want to
You can't socialise, but want to
You can't peruse hobbies, but want to
Most of your relationships have broken down isn't enough?

Discussing your sex life, or lacking it will add to that?

What if you're single, have taken a vow of chastity or there is some other reason you don't have sex?

 

[Dolphin]

I'm no expert on how sex might be discussed. But at the same time a lack of sex/intimacy may lead to relationship breakdown. Sometimes there are workarounds that might help couples if they were aware of them, though still the frequency will be likely a lot less. Also, some people may not feel able to have an open discussion with their partner. But probably the average clinician in a service for CFS is not likely to have much expertise in this area.

 

[Dolphin]

Currently, the service utilizes only two of the originally recommended BACME MDS: the SF36 – physical function (eleven items)34 and Chalder Fatigue Questionnaire.30

I presume this might be happening in other clinics in England i.e. that the Minimum Data Set is not being used any more.

 

[Dolphin]

the SF36 – physical function (eleven items)34 and Chalder Fatigue Questionnaire.30 Both place a large emphasis on the physical domain. The former is frequently inaccurate, as scores often diminish with acceptance and insight into the reality of the condition.48 The latter fails to interpret the physical lack of energy as a valid cause for reduced cognitive functioning.

48. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2015;(2):CD003200.

I've never heard that complaint before about the SF-36 physical function subscale. I don't remember such a comment from the Cochrane review, but it was a long document and my memory is not so good.

 

[Dolphin]

The [WHOQoL-Bref26] questionnaire has a less challenging format than other measures, as patients have influenced the design, rather than researchers.

Interesting if true.

 

[Dolphin]

Nelson et al41 warned against clinicians believing they knew enough about their patients’ problems and only regarding measurement as additional to their workload.

41. Nelson EC, Eftimovska E, Lind C, Hager A, Wasson JH, Lindblad S. Patient reported outcome measures in practice. BMJ. 2015;350:g7818.

 

[Dolphin]

(Minor point)
I wonder if this is the correct reference. It sounds like she's making a CFS-specific point.

Stenhoff et al17 confirmed that the condition receives little attention in the medical curriculum. Patients continue to report a lengthy period to diagnosis, frequently experiencing blame, and being held accountable for their poor health.78

78. Wiering B, Boer D, Delnoij D. Patient involvement in the development of patient-reported outcome measures: a scoping review. Health Expect. 2017;20(1):11–23.

 

[Invisible Woman]

A questionnaire I was asked to fill in phrased the sex question something like this:

"How often do you enjoy sex? "

My response was along the lines of -

"question is unclear, do you mean
1) how often do I have sex?
or
2) how often do I have sex and really enjoy it?
Because those two questions may not necessarily mean the same thing to everyone. Either way my sex life is none of your business."

I have a feeling they were glad to get rid of me!