Health outcome measurement in New Zealand

In May Associate Professor Margaret Sandham from Massey University, New Zealand, joined the team at the Cicely Saunders Institute to talk about her research developing culturally-appropriate health outcome measures for Māori people, including those in end-of-life care.

Margaret is a Registered Nurse and Clinical Psychologist, and has partnered with Māori researchers on this project. The POS is widely used in New Zealand and can assess people’s physical and psychological symptoms, as well as emotional, spiritual, information and support needs. The measures are widely used globally. To be useful, outcome
measures must be accurate, honest and true to people’s values.

The COSMIN standards state that understanding culture is an essential element of content validity. However, how this translates into outcome measure development, has not yet been described. In New Zealand, much work is ongoing to improve equity for Māori people. Māori models of health and practices around death are different from those in Western culture with a strong focus on spirituality and family as part of health.

Margaret and her team undertook a systematic review to identify what health and wellbeing outcome measures were available to support Māori people. They found seven measures that used a Māori worldview and included Māori concepts. None met the strict COSMIN criteria and there were no outcome measures for end-of-life care.

So Margaret worked alongside Māori researchers Dr Melissa Carey and Dr Tess Moeke-Maxwell who were developing outcome measures for end-of-life care, lending psychometric knowledge to traditional Māori knowledge to develop measures that prioritised Māori health models. The first measure Nuku Manawa Rahi was a compassionate self assessment tool, and the second was the Te Oro Ngākau Nui (The pathway to illumination and understanding) to support family who had a loved one considering medical assistance in dying.

Both research teams worked with Māori people to develop a tool from what Māori people said they needed. The research team were directed by feedback and developed a self-assessment tool from the domains identified from participant discussions. Both measures use Likert-type scales to open discussions between family and health providers, and are grounded in Māori world views and models of health.