Measuring the impact of health conditions on partners and family members

Our Breast Cancer Voices use their diverse breast cancer experiences to create change and impact breast cancer work and research.

Understanding family impact

When someone has a health condition, the lives of their family members or partners are often affected. Rubina Shah, a researcher at Cardiff University, developed a way for clinicians to better understand this impact and ways that people could be supported.

The FROM-16 questionnaire

Rubina and her team of researchers used a simple questionnaire called the “Family Reported Outcome Measure” (FROM-16). The questionnaire measures how families of people with a health condition are impacted by the disease.

FROM-16 contains 16 statements rated between 0 and 2. To make FROM-16 suitable for routine practice, the researchers created a way to help clinicians understand what different scores mean, by putting results into meaningful score bands.

Understanding the impact

To do this, the researchers collected information from over 4,400 family members of people with over 200 different health conditions. They recruited participants through some UK-based patient support groups, including Breast Cancer Now’s network, Breast Cancer Voices.

The team developed a way to put scores from the FROM-16 questionnaire into 5 meaningful bands. The bands ranged from “No effect” to “Extremely large effect” on a partner or family member’s life.

These proposed 5 categories could help healthcare professionals identify family members and partners most affected by someone’s health condition, and provide them with the right kind of support.

This research was published in BMJ Open.