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

Brittain, Esme; Muirhead, Nina; Finlay, A.Y.; Vyas, Jui

doi:10.3390/medicina57010043

Cited by 21 publications

(18 citation statements)

References 13 publications

(8 reference statements)

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“…Most previous studies on the impact on family members of persons with ME/CFS have focused on children with ME/CFS27–29 making comparisons difficult, however in a pilot study, Brittain et al 4 compared the impact of ME/CFS on UK patients and on family members, using WHOQoL-BRef and FROM-16. That study demonstrated that poor QoL of the person with ME/CFS is associated with a high impact on the QoL of family members.…”

Section: Discussionmentioning

confidence: 99%

“… 2 There is growing international acknowledgement of the impact of ME/CFS on caregivers, 3 but there is only a small scale pilot study, using the Family Reported Outcome Measure (FROM-16) which showed that QoL of partners and other family members is greatly impaired, suggesting that ME/CFS impact goes far beyond the affected person. 4 There is therefore very little information about the partner/family impact, a gap in ME/CFS knowledge which this study aims to address.…”

Section: Introductionmentioning

confidence: 99%

“…Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, debilitating disease, with existing literature demonstrating a negative impact on health-related quality of life (QoL),1 worse than for many other diseases 2. There is growing international acknowledgement of the impact of ME/CFS on caregivers,3 but there is only a small scale pilot study, using the Family Reported Outcome Measure (FROM-16) which showed that QoL of partners and other family members is greatly impaired, suggesting that ME/CFS impact goes far beyond the affected person 4. There is therefore very little information about the partner/family impact, a gap in ME/CFS knowledge which this study aims to address.…”

Section: Introductionmentioning

confidence: 99%

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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

et al. 2022

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ObjectivesThe 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).DesignA patient-partner, multinational, subject-initiated, cross-sectional online survey.SettingInternational survey using ME/CFS charities, support groups and social media.ParticipantsParticipants 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.InterventionsEuroQoL-5 Dimension (EQ-5D-3L), completed by people with ME/CFS, and Family Reported Outcome Measure (FROM-16) questionnaire, completed by family members.ResultsThe 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.ConclusionsTo 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.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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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

et al. 2022

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“…The FROM-16 is a family quality of life questionnaire designed to measure the family impact of any disease across all medical specialities, and was developed following interviews of family members of adult and paediatric patients, covering 144 different diagnoses across 26 medical specialities (Golics et al 2013). The FROM-16 has since been used in the eld of urology, to evaluate the family quality of life impact of urinary stone disease (Raja, Wood, and Joshi 2020), and in cancer (Chantarasap et al 2019), COVID-19 (Shah et al 2021) and myalgic encephalitis (Brittain et al 2021). It comprises 16 items in two domains (Emotional, and Personal & Social Life) which ask the participant to state how much they feel their relative's disease has impacted upon that area of their life, with 3 possible responses (0 Not at all, 1 A little, and 2 A lot).…”

Section: Family-reported Outcome Measure-16mentioning

confidence: 99%

Feasibility Study Protocol: Investigating Family Reported Outcome Measures (FROMs) in the Estimation of Societal Value of Advanced Therapeutic Medicinal Products (ATMPs)

Brilliant

Finlay

Salek

et al. 2022

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BackgroundAdvance Therapeutic Medicinal Products (ATMPs) are a novel class of therapeutics to provide more effective treatment of conditions or diseases that have not responded to conventional treatment. However, ATMPs are generally very expensive, limiting their availability. Indicated conditions are usually chronic and severe and can have an impact beyond the patient themselves, impairing the lives of partners and other family members. This family impact is a major secondary burden of disease that is often ignored. The Family Reported Outcome Measure (FROM-16) is the first generic questionnaire designed to measure the impact of any chronic disease on the quality of life of family members or partners of patients. It is simple-to-use and non-burdensome for those completing it.We aim to validate the FROM-16 instrument in the setting of patients receiving ATMPs by recruiting family members to complete FROM-16 and Global Health Score questionnaire and undergo a semi-structured interview.MethodsUp to 30 patients of any age who are preparing for, or who have received, ATMP treatment and their family members aged 18 years or older, attending NHS providers within the Midland-Wales Advanced Therapy Treatment Centre will be recruited into this study. Family members will be asked to complete the FROM-16 and Global Health Score questionnaires, provide basic demographic information and complete a short semi-structured interview. The interview will provide data to contextualise the FROM-16 responses and allow construct and content validity to be assessed. Themes of experience will be identified from interview transcripts. The FROM-16 responses will be evaluated for total score, domain score, and individual item score. Reliability of responses between and within domains will be assessed by intraclass correlation. DiscussionCollecting FROM data reliably is important for demonstrating the wider impact of disease and the extended value of treatments. We hypothesise that collecting FROMs using the FROM-16 tool is a valid method to measure this impact in the setting of patients receiving ATMPs and if so, could provide evidence in future of the overall quality of life impact on the partners and family members of such patients and greater understanding of the wider societal value of these costly treatments. Trial RegistrationThis trial has been adopted onto the NIHR portfolio (I.D. 51376) and registered with www.ClinicalTrials.gov (#NCT05141318) in December 2021.

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“…With regard to the impact of ME/CFS on the quality of life of patients and their families, Brittain et al [22] conducted a quantitative research study using postal questionnaires. Twenty-four adult volunteers responded, indicating that ME/CFS negatively affects the quality of life of the patient.…”

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confidence: 99%

Turning a Corner in ME/CFS Research

et al. 2021

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This collection of research papers addresses fundamental questions concerning the nature of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), the problem of disbelief and lack of knowledge and understanding of the condition among many doctors and the origins of this problem, and its impact on patients and their families. We report briefly the growing knowledge of the underlying pathological processes in ME/CFS, and the development of new organizations, including Doctors with ME, the US ME/CFS Clinical Coalition and EUROMENE, to address aspects of the challenges posed by the illness. We discuss the implications of COVID-19, which has much in common with ME/CFS, with much overlap of symptoms, and propose a new taxonomic category, which we are terming post-active phase of infection syndromes (PAPIS) to include both. This collection of papers includes a number of papers reporting similar serious impacts on the quality of life of patients and their families in various European countries. The advice of EUROMENE experts on diagnosis and management is included in the collection. We report this in light of guidance from other parts of the world, including the USA and Australia, and in the context of current difficulties in the UK over the promulgation of a revised guideline from the National Institute for Health and Care Excellence (NICE). We also consider evidence on the cost-effectiveness of interventions for ME/CFS, and on the difficulties of determining the costs of care when a high proportion of people with ME/CFS are never diagnosed as such. The Special Issue includes a paper which is a reminder of the importance of a person-centred approach to care by reviewing mind–body interventions. Finally, another paper reviews the scope for prevention in minimizing the population burden of ME/CFS, and concludes that secondary prevention, through early detection and diagnosis, could be of value.

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

Cited by 21 publications

References 13 publications

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

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

Feasibility Study Protocol: Investigating Family Reported Outcome Measures (FROMs) in the Estimation of Societal Value of Advanced Therapeutic Medicinal Products (ATMPs)

Turning a Corner in ME/CFS Research

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