Developing a Children’s Palliative Care Outcome Scale

20th May 2021

Researchers based at the Cicely Saunders Institute have carried out a systematic review of methods that allow children receiving palliative care to self-report their health outcomes. Self-report is the gold standard for measuring children’s health-related outcomes. However design of such measures is complex and challenging.

The review aims to systematically appraise the evidence on recall period, response scale format, mode of administration and approaches needed to enable children and young people under 19 years of age to participate in valid and reliable self-reporting of their health outcomes.

The review provides evidence that children and young people over 5 years old can meaningfully report on aspects of their own health, providing consideration is given to age, response format and recall period. Children as young as 4 years old expressed a preference for completing measures regarding their health via a computerised method.

The results of this review suggest that most children over five are able to reliably self-report on their health to some degree, with children younger than this exhibiting a ‘yes’ bias in response to questions.

To self-report health-outcomes, children must have at least a rudimentary self-concept and ability to express this, understand the basic notions of health and illness, be able to pay attention, discriminate between the response options, recall health experiences and write a response.

Lucy Coombes, lead author, says: “We give eight recommendations for future development of self-reported outcome measurement for children and young people.  Our findings from this systematic review will be used to inform development of the Children’s Palliative Outcome Scale”.

The recommendations are:

Proxy measures should be used for those under 5 years old.

Measures should be visually appealing, to improve acceptability.

PROM (Patient Reported Outcome Measures) studies should be analysed and reported in developmentally appropriate age bands.

Developers should consider different versions of a measure for different age groups.

Development should include both cognitive interview studies, and psychometric testing to enhance understanding of how children formulate answers.

5–7 years olds should be given a dichotomous response format; those 7 years and over should be given a three-point response format.

Recall period should be kept short, no more than 48 h for those 5–7 years.

PROMS should have a computerised version.

Coombes L, Bristowe K, Ellis-Smith C, Aworinde J, Fraser LK, Downing J, Bluebond-Langner M, Chambers L, Murtagh FEM, Harding R. Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Qual Life Res. 2021 Mar 18. doi: 10.1007/s11136-021-02814-4. Epub ahead of print. PMID: 33738710.