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The quality of life of persons with chronic fatigue syndrome (Anderson & Ferrans, 1997)

Dolphin

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A very nice paper, for anyone who has access to the full text

The quality of life of persons with chronic fatigue syndrome.

J Nerv Ment Dis. 1997 Jun;185(6):359-67.

Anderson JS, Ferrans CE.

Abstract

This descriptive study used a between-methods triangulation design to analyze the multiple dimensions of quality of life in persons with chronic fatigue syndrome (CFS).

This method, which refers to the combination of both quantitative and qualitative methods in the same study, allowed the authors to obtain more comprehensive and robust data than could be obtained by either method alone.

A convenience sample of 110 persons with CFS completed the quality of life index and CFS questionnaire, and a subset of 22 persons were interviewed regarding their lived experience with CFS.

Overall scores on the quality of life index were significantly lower in CFS than for other chronic illness groups. Subjects reported the lowest quality of life scores in health and functioning domain.

Indepth interviews provided a more complete understanding of the quality of life in CFS and further explained the low ratings that were found on the quality of life index.

The findings suggest that quality of life is particularly and uniquely disrupted in CFS.

PMID: 9205421 [PubMed - indexed for MEDLINE]
 

Dolphin

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17,567
"The findings suggest that quality of life is particularly and uniquely disrupted in CFS"

A two- to three-point difference in scores is considered a clinically significant difference for the QLI.

30 is the best score, 0 the worst.

QoL in CFS versus other conditions.png
 

Dolphin

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17,567
All participants in the interview subgroup stated that CFS had profoundly impacted every aspect of their lives in ways they had never imagined possible.

It's changed absolutely everything I do: what I eat, where I live. It's stopped my life. My whole perception of life, which took 30 years to put together, is totally gone.

All participants related profound and multiple losses, including the loss of jobs, relationships, financial security, future plans, daily routines, hobbies, stamina and spontaneity, and even their sense of self because of CFS. Activity was reduced to basic survival needs for some subjects:

I spend 21-23 hours of my day lying down. Even then, it's an effort to use parts of my body. To lift my hand to write a check is too much. Last time I tried walking, I got to the end of the block and had to lay down for 15 minutes before I had the strength to go back home. So I don't even consider that anymore. I haven't dealt with the problems that I'll eventually have to deal with: like my boyfriend leaving me, my lost job and friends...these are all awful things, but right now I have no stamina to think about them. All I care about is getting to a level where my illness is tolerable.
 
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Dolphin

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17,567
Because of symptom variation, the entire interview subgroup (100%) had difficulty describing their level of functioning for any given day. Participants differentiated acute episode experiences from current experiences and further described their present level of functioning in terms of “good days” and “bad days.” A myriad of symptoms were reported as bothersome, but half (50%) felt that cognitive dysfunction was the most disruptive symptom. Participants felt that although their cognitive symptoms were subtle, they were embarrassing and not fully recognized or appreciated by network members. Also troubling was their difficulty in describing their fatigue in ways that others could understand.

It's as if it's finals week at school and you've been up for three nights straight. Then you drank 6 martinis. Then you tried to crash, but someone shot you full of espresso. So you're exhausted, hung-over, and now injected with a stimulant. You're exhausted but can't sleep, and you can't function. And it never goes away.
 

Dolphin

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17,567
Social Aspects

The interviews supported the low satisfaction scores found on the QLI in the social domain. All participants (100%) felt that CFS had devastated social relationships and activities. All (100%) reported that their social activities were less frequent and more sedentary since CFS onset. Coworker friendships and friendships based on shared physical activity were lost when the subject was no longer able to perform in these roles.

I couldn't ski or play volleyball anymore and friends of 15 years stopped returning my calls and quietly disappeared. I wasn't fun anymore.
 

Dolphin

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Economic Aspects

As noted earlier, 66% of the sample was disabled, and only 15% were employed full-time. Of the interview subgroup, 77% reported significant financial hardship due to CFS. Participants reported that they had exhausted their savings and sense of security (14%), were forced into debt (27%), were forced to move (18%), and had become financially dependent on family (18%) or friends (1%). They often could not afford treatments and therapies (18%) and were dissatisfied with the lack of insurance coverage for alternative therapies and special nutritional needs. One participant spent $10,000 on alternative therapies alone.

Financial pressures also created significant stress and worry for the interview subgroup. One participant's marriage became strained because of his inability to work, and 27% reported that they had no economic choice but to push themselves to work despite worsening symptoms. Economic factors therefore contributed to illness severity and, perhaps, lack of recovery. Additionally, the interview subgroup experienced stress, mental strain, and depletion of energy from the rigorous application process for social security and disability benefits, stating that they lacked the stamina necessary to “prove” the extent of their disability. Eighteen percent reported relapses as a result of their efforts to obtain disability benefits.
 

Dolphin

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The extent of the losses experienced in CFS was devastating, both in number and intensity. Emotional well-being was reported to be significantly affected by the numerous physical and functional losses (which included a singer's inability to speak above a whisper and the lost ability to wash one's own hair, play the piano, or cut vegetables), economic and material losses, social losses (which included the loss of relationships, roles, hobbies, and activities), and personal identity losses. The losses associated with relationships and social support were noted to be particularly devastating to 73% of the participants.
 

Dolphin

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The domain in which PWCs had the lowest QOL was in the health and functioning domain. The scores in this domain were significantly lower than the other three domains. CFS was reported to impose significant physical limitations, despite the fact that the disabilities were not readily observable and most subjects appeared healthy. The interview subgroup reported that health and functioning aspects in CFS were the aspects most underestimated or misunderstood by others, which led to stigma, lack of support, and poor awareness or acceptance of the illness by others. Additionally, although CFS is not life-threatening, participants were nonetheless quite concerned about their health, the unknown etiology of their illness, and their uncertain prognosis.
 

Dolphin

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Another problem in the evaluation of level of functioning in CFS is the marked variability in symptom presentation and degree of disability. The interview subgroup had difficulty quantifying their functional abilities because of symptom variability and reported marked fluctuations in performance. This was perhaps the most difficult aspect of the illness to assess with a Likert scale. This finding has implications for researchers and clinicians who wish to use standard instruments with this population. Furthermore, participants reported that they had the capacity to push themselves to perform at higher levels temporarily, but the effort invariably resulted in relapse. In fact, some participants reported a relapse of symptoms even after the mild exertion that was required to participate in this study. Thus, functional assessment of PWCs should include testing over a period of time, with consideration of the impact of exertion on one's ability to perform.
 

Dolphin

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All subjects reported significant disruption in social activities and relationships due to illness. The interview subgroup reported that social disruption was due to a number of factors, including the PWCs' diminished capacity to enlist support or maintain social ties, nonsupportive responses from the support network, inaccurate perceptions regarding the illness within the community at large, and the inability to plan activity due to symptom variability. The consequent effect of this disruption was marked feelings of isolation and insufficient (in terms of quantity) and ineffective (in terms of quality) levels of social support for these individuals.
 

Dolphin

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Scores on the psychological/spiritual subscale of the QLI were significantly lower for PWCs in this study than for any other chronic illness group. The interview subgroup felt that CFS brought their lives to a standstill, completely disrupted all aspects of their preillness lifestyle, and ravaged their sense of self. The impact of CFS on their lives was so total and devastating that participants had considerable difficulty accepting the illness and its consequences. The interview subgroup repeatedly noted the extensive and multiple losses they incurred as a result of CFS
.
 

Dolphin

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Illness-specific aspects of QOL were identified through structured interviews and included symptom variability, cognitive dysfunction, exertional relapse, and impaired social networks, all of which were found to have a significant negative impact on subjects' QOL. CFS is a poorly understood and often trivialized illness, which in reality causes marked disruption and devastation in one's life. By examining the QOL in this population, the specific issues faced by PWCs can be identified, and sensitivity regarding the significant impact that CFS has on patients' lives can be achieved.
 

Denise

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Dolphin

Senior Member
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17,567
I am very glad to read what you are posting! Thanks for sharing this find.

One of the authors - Ferrans - is a co-developer of a QOL questionnaire.
http://www.uic.edu/orgs/qli/questionaires/pdf/chronicfatigueversionIII/chronic fatigue syndrome.pdf
Looks like the questionnaire they used, or close to it (extract mentions 34 (cf. 36) aspects of life - maybe there are two dummy questions or something)

The QLI consists of two corresponding sections: one measures a person's satisfaction with 34 aspects of life, and
the other measures the importance of those same aspects to the individual. Items are rated on a six-point Likert-type
scale, ranging from “very dissatisfied” to “very satisfied” for the satisfaction items and “very unimportant” to “very
important” for the importance items.

The QLI measures QOL overall and in four major domains: health and functioning, social and economic,
psychological/spiritual, and family. QOL scores for the four domains and total scale are obtained by weighting the
satisfaction items with their paired importance items. The highest scores are obtained for item combinations of high
satisfaction/high importance, and lowest scores are obtained for item combinations of high dissatisfaction/high
importance. Items of low importance contribute to mid-range scores. The rationale behind this approach is based on
the assumption that those who are highly satisfied with important areas of their life will have higher QOL than those
who are highly dissatisfied with important areas of their life (Ferrans and Powers, 1985). Possible scores for the four
subscales (domains) and total scale range from 0 to 30.