Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members, Brittain et al, 2021

John Mac · Jan 7, 2021

Abstract
Background and objectives:
To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments.

Materials and Methods:
A quantitative research study using postal questionnaires was conducted.
A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires.
Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire.

Results:
ME/CFS negatively affects the quality of life of the patient
(median scores WHOQOL-BREF:
Physical health = 19,
Psychological = 44,
Social relationships = 37.5,
Environment = 56,
n = 24)
and their family members’ quality of life
(FROM-16:
Emotional = 9.5,
Personal and social = 11.5,
Overall = 20.5,
n = 42).
There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores.

Conclusions:
This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members.
Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains.
Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness.
This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.
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https://www.mdpi.com/1010-660X/57/1/43/htm

ME/CFS Skeptic · Jan 7, 2021

Quote from the paper:

With a mean total FROM-16 score of 19.9, the negative impact on family members’ QoL was significantly higher (mean = 19.9 SD = 7.2 n = 42) compared to previous FROM-16 scores of family members of patients with 25 other diseases (mean = 12.3, SD = 7.5, n = 120, p < 0.001
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Here's a link to the Family Reported Outcome Measure (FROM‐16): https://www.cardiff.ac.uk/__data/as...d-Outcome-Measure-FROM-16-English-version.pdf

EducateME · Jan 7, 2021

Merged thread

https://www.mdpi.com/1010-660X/57/1/43

Lovely little study and a small scale model that helped us prepare for the international research on ME/CFS impact on family members QoL.

I know there is much more to be done, having spent half of this week in bed I have to think - baby steps, slow and steady wins the race.

Peter Trewhitt · Jan 7, 2021

Abstract
Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members, Brittain et al, 2021

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members, Brittain et al, 2021

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EducateME Established Member

Peter Trewhitt Senior Member (Voting Rights)

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