Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer

Chantarasap, Pattariya; Johns, Nick; Pairojkul, Srivieng; Sookprasert, Aumkhae; Wirasorn, Kosin; Cheawchanwattana, Areewan; Salek, Sam; Subongkot, Suphat

doi:10.1186/s12955-019-1091-3

Cited by 15 publications

(27 citation statements)

References 22 publications

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“…Our data demonstrate that the QoL of family members of persons with ME/CFS is more impaired than in other conditions. 18 19 In our study, in the emotional domain of FROM-16, worry was the most frequently impacted item (96.1%, n=1362), frustration was experienced by 93% (n=1319) and sadness by 92.9% (n=1317).…”

Section: Discussionmentioning

confidence: 50%

“…There was no significant difference (p=0.07) between the mean family impact for the Brittain study (mean FROM-16 score=19.9, n=42) compared with our current international study (mean score=17.9, n=1418). Chantarasap et al 18 assessed the impact on the QoL of family members of 248 patients diagnosed with various different cancers including haematological malignancies. The mean FROM-16 score was 11.75 (significantly lower than in our study p<0.0001) with the mean scores in the emotional domain=4.1, and personal and social life domain=7.1.…”

Section: Discussionmentioning

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: 50%

Section: Discussionmentioning

confidence: 99%

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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“…Thus, it should be noted, that the original English version also had weaknesses in terms of the two domain structure, which was demonstrated by several cross loadings. The two-domain structure proposed for the original English version of FROM-16 [ 14 ] and the recently published Thai FROM-16 [ 35 ] could therefore not be confirmed for the German version. The best fit to the data was achieved by using a bi-factor model with a general factor that included all items, and two sub-factors that comprised the items from the original 2-factor construct.…”

Section: Discussionmentioning

confidence: 95%

Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

Elsner¹,

Salek

Finlay

et al. 2021

Health Qual Life Outcomes

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Background The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods The questionnaire was translated from English into German (forward, backward, four independent translators). Six interviews with family members were conducted to confirm the questionnaire for linguistic, conceptual, semantic and experiential equivalence and its practicability. The final German translation was tested for internal consistency, reproducibility and test validity. Criterion validity was tested by correlating the scores of the FROM-16 and the Global Health Scale (GHS). Principal component analysis, factor analysis, and confirmatory factor analysis was used to assess the questionnaire’s structure and its domains. Reliability and reproducibility were tested computing the intraclass correlation coefficient (ICC) using one sample t-test for testing the hypothesis that the difference between the scores was not different from zero. Results Overall, 83 family members (61% female, median age: 61 years) completed the questionnaire at two different times (mean interval: 22 days). Internal consistency was good for the FROM-16 scores (Cronbach’s α for total score = 0.86). In those with stable GHS, the ICC for the total score was 0.87 and the difference was not different from zero (p = 0.262) indicating reproducible results. A bi-factor model with a general factor including all items, and two sub-factors comprising the items from the original 2-factor construct had the best fit. Conclusions The German FROM-16 has good reliability, test validity and practicability. It can be considered as an appropriate and generic tool to measure QoL of a patient’s partner or family member. Due to the presence of several cross-loadings we do not recommend the reporting of the scores of the two domains proposed for the original version of FROM-16 when using the German version. Thus, in reporting the results emphasis should be put on the total score. Trial registration: Retrospectively registered: DRKS00021070.

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“…The FROM-16 has proven psychometric properties, a rapid completion time of 2 min 5 and translations are available in several languages. 6 A generic measure, the FROM-16 has been validated across all areas of medicine [5][6][7] and is therefore suitable for measuring the impact of COVID-19 on the partner and family members of those affected. As it is a generic measure, data generated can be compared with data from other medical conditions.…”

Section: Measurement Toolsmentioning

confidence: 99%

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

et al. 2021

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ObjectiveThis study aimed to measure the impact of COVID-19 on the quality of life (QoL) of survivors and their partners and family members.Design and settingA prospective cross-sectional global online survey using social media.ParticipantsPatients with COVID-19 and partners or family members (age ≥18 years).InterventionOnline survey from June to August 2020.Main outcome measureThe EuroQol group five dimensions three level (EQ-5D-3L) to measure the QoL of survivors of COVID-19, and the Family Reported Outcome Measure (FROM-16) to assess the impact on their partner/family member’s QoL.ResultsThe survey was completed by 735 COVID-19 survivors (mean age=48 years; females=563) at a mean of 12.8 weeks after diagnosis and by 571 partners and 164 family members (n=735; mean age=47 years; females=246) from Europe (50.6%), North America (38.5%) and rest of the world (10.9%). The EQ-5D mean score for COVID-19 survivors was 8.65 (SD=1.9, median=9; range=6–14). 81.1% (596/735) reported pain and discomfort, 79.5% (584/735) problems with usual activities, 68.7% (505/735) anxiety and depression and 56.2% (413/735) problems with mobility. Hospitalised survivors (20.1%, n=148) and survivors with existing health conditions (30.9%, n=227) reported significantly more problems with mobility and usual activities (p<0.05), with hospitalised also experiencing more impact on self-care (p≤0.001). Among 735 partners and family members, the mean FROM-16 score (maximum score=highest impact =32) was 15 (median=15, range=0-32). 93.6% (688/735) reported being worried, 81.7% (601/735) frustrated, 78.4% (676/735) sad, 83.3% (612/735) reported impact on their family activities, 68.9% (507/735) on sleep and 68.1% (500/735) on their sex life.ConclusionCOVID-19 survivors reported a major persisting impact on their physical and psychosocial health. The lives of their partners and other family members were also severely affected. There is a need for a holistic support system sensitive to the needs of COVID-19 survivors and their family members who experience a major ‘secondary burden’.

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Validation of the Thai version of the family reported outcome measure (FROM-16)© to assess the impact of disease on the partner or family members of patients with cancer

Cited by 15 publications

References 22 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

Validation of the German version of the Family Reported Outcome Measure (FROM-16) to assess the impact of disease on the partner or family member

Measuring the impact of COVID-19 on the quality of life of the survivors, partners and family members: a cross-sectional international online survey

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