Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members
<i>Background and objectives:</i> 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 O...
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| Format: | Article |
| Language: | English |
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MDPI AG
2021-01-01
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| Series: | Medicina |
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| Online Access: | https://www.mdpi.com/1010-660X/57/1/43 |
| _version_ | 1797710310390366208 |
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| author | Esme Brittain Nina Muirhead Andrew Y. Finlay Jui Vyas |
| author_facet | Esme Brittain Nina Muirhead Andrew Y. Finlay Jui Vyas |
| author_sort | Esme Brittain |
| collection | DOAJ |
| description | <i>Background and objectives:</i> 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. <i>Materials and Methods:</i> 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. <i>Results:</i> 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, <i>n</i> = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, <i>n</i> = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. <i>Conclusions:</i> 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. |
| first_indexed | 2024-03-12T06:50:20Z |
| format | Article |
| id | doaj.art-90c0ac98c0424fa18f80a45ec9c79c05 |
| institution | Directory Open Access Journal |
| issn | 1010-660X |
| language | English |
| last_indexed | 2024-03-12T06:50:20Z |
| publishDate | 2021-01-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Medicina |
| spelling | doaj.art-90c0ac98c0424fa18f80a45ec9c79c052023-09-03T00:20:08ZengMDPI AGMedicina1010-660X2021-01-0157434310.3390/medicina57010043Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family MembersEsme Brittain0Nina Muirhead1Andrew Y. Finlay2Jui Vyas3School of Medicine, Cardiff University, Cardiff CF14 4XN, UKBuckinghamshire Healthcare NHS Trust, Amersham Hospital, Amersham HP7 0JD, UKSchool of Medicine, Cardiff University, Cardiff CF14 4XN, UKSchool of Medicine, Cardiff University, Cardiff CF14 4XN, UK<i>Background and objectives:</i> 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. <i>Materials and Methods:</i> 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. <i>Results:</i> 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, <i>n</i> = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, <i>n</i> = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. <i>Conclusions:</i> 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.https://www.mdpi.com/1010-660X/57/1/43ME/CFSQoLfamily impactFROM-16WHOQOL-BREF |
| spellingShingle | Esme Brittain Nina Muirhead Andrew Y. Finlay Jui Vyas Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members Medicina ME/CFS QoL family impact FROM-16 WHOQOL-BREF |
| title | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members |
| title_full | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members |
| title_fullStr | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members |
| title_full_unstemmed | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members |
| title_short | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members |
| title_sort | myalgic encephalomyelitis chronic fatigue syndrome me cfs major impact on lives of both patients and family members |
| topic | ME/CFS QoL family impact FROM-16 WHOQOL-BREF |
| url | https://www.mdpi.com/1010-660X/57/1/43 |
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