Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK

Shah, Rupali D; Finlay, A.Y.; Salek, Sam; Nixon, Stuart J; Otwombe, Kennedy; Ali, Faraz; Ingram, John R.

doi:10.1136/bmjopen-2022-066168

Cited by 6 publications

(7 citation statements)

References 27 publications

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“…This unique study examined the experience and impact on QoL of family members/partners of people with haematological conditions, using a validated generic family specific measure, FROM-16, with validated score bands to interpret the meaning of scores. 11 While the impact was observed across all conditions, family members of people with haematological malignancies were impacted more than family members of those with non-malignant haematological conditions. The QoL of family members of multiple myeloma was more impacted than that of family members/partners of people with other malignant haematological conditions but this difference in impact was not significant (p = .174).…”

Section: Discussionmentioning

confidence: 95%

“…The data used in this study came from a large online cross-sectional study of family members/partners of people with a wide range of medical conditions. 11 In this study, people with haematological conditions and their partners/family members were recruited online through Myeloma UK, Lymphoma Action, MDS, Pernicious Anaemia support group, Genetic Alliance UK and Healthwise Wales (HWW).…”

Section: Study Design and Participant Recruitmentmentioning

confidence: 99%

“…The interpretation of scores is described using validated score meaning bands. 11 The FROM-16 has been mapped to EQ-5D 12 and could potentially be used to convert QoL scores into utility values, thus allowing inclusion of disease impact of family members in health economic analysis.…”

Section: Measurement Of Family Qolmentioning

confidence: 99%

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Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study

Shah,

Finlay,

Ali

et al. 2024

European J of Haematology

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BackgroundHaving a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions.ObjectiveTo measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure‐16 (FROM‐16).MethodsA cross‐sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM‐16.Results183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM‐16. The FROM‐16 mean total score was 14.0 (SD = 7.2), meaning ‘a moderate effect on QoL’. The mean FROM‐16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non‐malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a ‘very large effect’ (FROM‐16 score>16) on their quality of life.ConclusionsHaematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM‐16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

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Section: Discussionmentioning

confidence: 95%

Section: Study Design and Participant Recruitmentmentioning

confidence: 99%

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Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study

Shah,

Finlay,

Ali

et al. 2024

European J of Haematology

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“…The FROM-16 measures QoL impact of a patient’s disease on their family members/partners across all areas of medicine [ 13 ]. It is validated and translated into many languages [ 14 – 17 ]: score descriptor bands have been calculated [ 18 ]. Mapping FROM-16 to EQ-5D would enable the calculation of QALYs for family members and/or informal carers allowing comparability with patient utilities.…”

Section: Introductionmentioning

confidence: 99%

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values

Shah,

Salek,

Finlay

et al. 2024

Qual Life Res

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Objective Although decision scientists and health economists encourage inclusion of family member/informal carer utility in health economic evaluation, there is a lack of suitable utility measures comparable to patient utility measures such those based on the EQ-5D. This study aims to predict EQ-5D-3L utility values from Family Reported Outcome Measure (FROM-16) scores, to allow the use of FROM-16 data in health economic evaluation when EQ-5D data is not available. Methods Data from 4228 family members/partners of patients recruited to an online cross-sectional study through 58 UK-based patient support groups, three research support platforms and Welsh social services departments were randomly divided five times into two groups, to derive and test a mapping model. Split-half cross-validation was employed, resulting in a total of ten multinomial logistic regression models. The Monte Carlo simulation procedure was used to generate predicted EQ-5D-3L responses, and utility scores were calculated and compared against observed values. Mean error and mean absolute error were calculated for all ten validation models. The final model algorithm was derived using the entire sample. Results The model was highly predictive, and its repeated fitting using multinomial logistic regression demonstrated a stable model. The mean differences between predicted and observed health utility estimates ranged from 0.005 to 0.029 across the ten modelling exercises, with an average overall difference of 0.015 (a 2.2% overestimate, not of clinical importance). Conclusions The algorithm developed will enable researchers and decision scientists to calculate EQ-5D health utility estimates from FROM-16 scores, thus allowing the inclusion of the family impact of disease in health economic evaluation of medical interventions when EQ-5D data is not available.

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“…Mapping of FROM-16 scores to EQ-5D-3L utility values is now possible for economic appraisal purposes [ 9 ]. Crucially, score-meaning band descriptors have been described [ 10 ], potentially transforming FROM-16 into a useful clinical tool. However, it is also important to demonstrate that the measure responds appropriately to QoL change, and also to know the threshold of a minimal change in the family member’s QoL that family members consider important i.e.…”

Section: Introductionmentioning

confidence: 99%

Responsiveness and minimal important change of the Family Reported Outcome Measure (FROM-16)

Shah,

Finlay,

Salek

et al. 2024

J Patient Rep Outcomes

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Background The FROM-16 is a generic family quality of life (QoL) instrument that measures the QoL impact of patients’ disease on their family members/partners. The study aimed to assess the responsiveness of FROM-16 to change and determine Minimal Important Change (MIC). Methods Responsiveness and MIC for FROM-16 were assessed prospectively with patients and their family members recruited from outpatient departments of the University Hospital Wales and University Hospital Llandough, Cardiff, United Kingdom. Patients completed the EQ-5D-3L and a global severity question (GSQ) online at baseline and at 3-month follow-up. Family members completed FROM-16 at baseline and a Global Rating of Change (GRC) in addition to FROM-16 at follow-up. Responsiveness was assessed using the distribution-based (effect size-ES, standardized response mean -SRM) and anchor-based (area under the receiver operating characteristics curve ROC-AUC) approaches and by testing hypotheses on expected correlation strength between FROM-16 change score and patient assessment tools (GSQ and EQ-5D). Cohen’s criteria were used for assessing ES. The AUC ≥ 0.7 was considered a good measure of responsiveness. MIC was calculated using anchor-based (ROC analysis and adjusted predictive modelling) and distribution methods based on standard deviation (SD) and standard error of the measurement (SEM). Results Eighty-three patients with 15 different health conditions and their relatives completed baseline and follow-up questionnaires and were included in the responsiveness analysis. The mean FROM-16 change over 3 months = 1.43 (SD = 4.98). The mean patient EQ-5D change over 3 months = −0.059 (SD = 0.14). The responsiveness analysis showed that the FROM-16 was responsive to change (ES = 0.2, SRM = 0.3; p < 0.01). The ES and SRM of FROM-16 change score ranged from small (ES = 0.2; SRM = 0.3) for the distribution-based method to large (ES = 0.8, SRM = 0.85) for anchor-based methods. The AUC value was above 0.7, indicating good responsiveness. There was a significant positive correlation between the FROM-16 change scores and the patient’s disease severity change scores (p < 0.001). The MIC analysis was based on data from 100 family members of 100 patients. The MIC value of 4 was suggested for FROM-16. Conclusions The results of this study confirm the longitudinal validity of FROM-16 which refers to the degree to which an instrument is able to measure change in the construct to be measured. The results yield a MIC value of 4 for FROM-16. These psychometric attributes of the FROM-16 instrument are useful in both clinical research as well as clinical practice.

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Meaning of Family Reported Outcome Measure (FROM-16) severity score bands: a cross-sectional online study in the UK

Cited by 6 publications

References 27 publications

Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study

Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross‐sectional study

Mapping of Family Reported Outcome Measure (FROM-16) scores to EQ-5D: algorithm to calculate utility values

Responsiveness and minimal important change of the Family Reported Outcome Measure (FROM-16)

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