The lives of partners and family members are often affected by a person’s health condition,, including MS. Although family members caring for or living with a patient may experience equal or sometimes even more impact on their life quality than the patient themselves,, the wider family burden of disease has been largely unrecognised or ignored. The researchers at Cardiff University believe that if they can measure this impact, this data can be used to target support where needed and can be used as additional outcome data in the assessment of novel therapies or management strategies.
The researchers have created a simple questionnaire to measure this impact, the Family Reported Outcome Measure (FROM-16) in 2014. The FROM-16 is a family quality of life (QoL) questionnaire which measures the impact of a person’s health condition on the QoL of the family member or a partner. It comprises 16 items. The lowest possible score is 0, and the highest is 32. The higher the total score, the greater the negative impact on the family member’s QoL.
Although a higher score of FROM-16 indicates a greater impact on family members’ QoL, for this questionnaire to be useful in a clinical or research setting, there is a need for the scores to have some practical meaning. Descriptive score banding, therefore, gives vital meanings to absolute scores. The cut-off points that would result from the development of score bands for FROM-16 would make it easier for clinicians to identify at-risk and high-risk family members and direct them to the appropriate support services. Besides, while the development of ways to calculate carer and /or family member impact is encouraged by the National Institute for Health and Care Excellence (NICE), the gap in the availability of such measures is a significant limitation to the inclusion of disease impact on carers and family members in economic evaluations of medical intervention.
The researchers are currently conducting a study to develop score bands for FROM-16 scores, which will help clinicians know what the different scores mean so that partners and family members can be given the right kind of support. The researchers are also trying to use the FROM-16 questionnaire to understand the wider impact of a health condition and develop the way to use the FROM -16 questionnaire in health economic evaluation of medical intervention taking family member’s QoL into consideration in addition to the patients’. The researchers plan study outcomes to be published in a reputable peer-reviewed journal and websites of patient support groups to have the right influence on policy and practice promoting the clinical use of FROM-16.
The study is looking for the family members of people with chronic conditions aged at least 18 years to answer a short online survey that takes 5-minutes. If you know someone in your family that might be able to answer, please click here for more information: https://cardiff.onlinesurveys.ac.uk/measuring-the-family-impact-of-a-persons-health-condition-ms