BMJ: Impact of ME/CFS on the quality of life of people with ME/CFS and their partners and family members.... Vyas, Muirhead et al, 2022

Kalliope

Kalliope

Senior Member (Voting Rights)
Full title:
Impact of myalgic encephalomyelitis/chronic fatigue syndrome /ME/CFS) on the quality of life of people with ME/CFS and their partners and family members: an online cross-sectional survey
Jui Vyas, Nina Muirhead et al

Abstract
Objectives The aim of this study was to assess the impact of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on the quality of life (QoL) of people with ME/CFS and their relative or partner (family member).

Design A patient-partner, multinational, subject-initiated, cross-sectional online survey.

Setting International survey using ME/CFS charities, support groups and social media.

Participants Participants were self-selected with recruitment via social media. Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey. Participants with ME/CFS had a mean age of 45.8 years (range 18–81) and were predominantly women (1214 (85.6%) of 1418). Family members had a mean age of 51.9 years (range 18–87) and were predominantly men (women: 504 (35.5%) of 1418). 991 (70%) family members were partners of the people with ME/CFS.

Interventions EuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.

Results The mean overall health status on a Visual Analogue Scale for people with ME/CFS was 33.8 (0=worst, 100=best). People with ME/CFS were most affected by ability to perform usual activities, pain, mobility, self-care and least impacted by anxiety. For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.

Conclusions To the best of our knowledge, this is the largest study on the impact of the QoL of persons with ME/CFS and their family members. While open participation surveys are limited by selection bias, this research has revealed a significant worldwide burden of ME/CFS on the QoL of people with ME/CFS and their family members.
 
A very worthwhile study, I think. And the abstract is one of the clearest and most useful I've seen, writtten in jargon free English and with the relevant data clearly stated without overinterpretation.

I would like to see them do a parallel study for those who have no family member to care for them, including those who are themselves carers as well as being ill. Dependence on social services and/or complete isolation when not alleviated by having a loved one to care for us is a whole different story that needs to be told too.

Edit to add: From the paper:
Unanswered questions and future research
Not all people with ME/CFS have a family member or partner to complete the FROM-16. Several individuals wrote to the research team explaining their isolation, difficulty maintaining family relationships and/or lack of empathy of family members. Further research is needed to understand the wider impact of ME/CFS on families and on individuals.
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Kalliope said:
Inclusion criteria were aged 18 years or over and reported diagnosis of ME/CFS by health professional. 1418 people with ME/CFS and their 1418 family members from 30 countries participated in the survey.
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A very respectable sample.

What I think is new (in a large survey) is the data on the scale of impact on family members: 18/32 (0-32 scale, 32 is worst). There is a moderate-to-strong correlation between the severity of illness and the impact on the family member (0.35 with VAS severity, 0.41 with EQD5).
Kalliope said:
For family members, the overall mean FROM-16 score was 17.9 (0=no impact, 32=worst impact), demonstrating a major impact on QoL. Impact on QoL was significantly correlated between the person with ME/CFS and their family member (p<0.0001). Family members were most impacted emotionally by worry, frustration and sadness and personally by family activities, holidays, sex life and finances.
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also those who do not have any survival capability due to lack of services. survival needs not met. i am facing this.

that is, nobody able or willing to help if any and no government services that help.

also children whose family, doctors, peers, teachers do not treat them as sick. [edit: this was my case as child.]

Trish said:
A very worthwhile study, I think. And the abstract is one of the clearest and most useful I've seen, writtten in jargon free English and with the relevant data clearly stated without overinterpretation.

I would like to see them do a parallel study for those who have no family member to care for them, including those who are themselves carers as well as being ill. Dependence on social services and/or complete isolation when not alleviated by having a loved one to care for us is a whole different story that needs to be told too.

Edit to add: From the paper:
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ME/CFS Clinical Tool – Measuring Family Quality of Life Impact
The FROM-16 validated quality of life tool is a pragmatic addition to the frontline clinical toolbox, allowing for holistic decision making to be made regarding care and broader service provision.

Doctors with M.E. Director Dr. Nina Muirhead presents new findings with her co-authors for the significantly greater negative impact of ME/CFS on the quality of life of family members compared to other conditions, including various cancers. Impact on quality of life was significantly correlated between the person with ME/CFS and their family member. These FROM-16 based findings are also consistent with the consensus literature regarding the striking disability of ME/CFS versus other conditions.

This new research demonstrates the role of family-wide quality of life assessment when clinicians offer or recommend treatments or services, including by social care, occupational therapy or other providers.
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full write up
https://doctorswith.me/familyqoltool/
 
Honestly it's not great. Way too many questions about emotional states, I don't understand the point of this entire section.

The questions are too superficial and have too many possible interpretations, not practical enough.

I don't consider that questionnaire useful. Disappointing.
 
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