2022 - FROM-16: Measuring the Hidden Burden of Family Impact of Disease

This webinar will help uncover and measure a major hidden and ignored burden of disease. The featured speakers will explain why the impact of disease on partners and other family members is important, and how to measure the impact with a validated generic measure, the Family Reported Outcome Measure (FROM-16). The speakers will review its global use and explain the latest successful validation of score meaning bands, that transforms the FROM-16 from being a purely research tool into a clinical measure that informs clinical decision-making. In addition, they will show how to map FROM-16 scores to EQ-5D (a questionnaire-based system that measures people’s health) utility values, allowing the use of FROM-16 to inform value-based healthcare calculations, and describe further validation studies underway.
The quality of life (QOL) impact of disease has several dimensions apart from the immediate impact on the patient. The impact on other family members has largely been ignored, despite this huge hidden burden of disease. Understanding this impact is important in order to develop strategies to alleviate it, to ensure that novel therapeutic interventions also benefit family QOL and to support family members who may be crucial in assisting with therapy adherence. The speakers’ research studies have revealed that nearly all family subjects state that their experiences have never previously been considered by healthcare professionals.
Things that can’t be measured generally get ignored by science. The speakers therefore created the generic measure FROM-16, based on qualitative and quantitative work across 26 specialties, including Rasch analysis as part of the validation. It consists of 16 short questions across two domains, with a simple scoring system.
FROM-16 is available in more than 15 translations, with more underway, and has detailed published revalidation in Germany, Thailand and Poland. A recently completed study from the speakers, based on data from more than 4,400 patient/family member pairs, has created score meaning descriptor bands. As an example: if the score is greater than 16, this means that the family member is experiencing a major impact on their life quality because of a relative with a disease. This transforms FROM-16 into a simple usable clinical tool which has promising utility in clinical research to gain a competitive edge when comparing interventions, as well as in clinical practice. This could be of interest to both the medicine/medical devices regulatory authorities and heath technology assessment agencies. Studies are also underway to understand the impact of skin diseases on family members in comparison to the impact of other general medical conditions.
One of the strengths of a generic QOL measure is the opportunity to compare the impact of different diseases between specialties. The potential as yet untapped benefits of possible future applications of FROM-16 will be explored in this webinar.
Register to learn how the FROM-16 can help measure the hidden family impact of burden of disease and to understand its benefits to all stakeholders. The speakers will also share practical conditions of access to the FROM-16 and information on the available FROM-16 translations.