As practitioners dedicated to improving outcomes for children, staying abreast of the latest research and methodologies is crucial. One recent study, "Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): cognitive interviews with children," provides valuable insights into creating effective Patient Reported Outcome Measures (PROMs) for children with CFS/ME. This blog will explore the key findings and how they can be implemented to enhance pediatric therapy practices.
The Importance of Patient Reported Outcome Measures (PROMs)
PROMs are essential tools in pediatric therapy, providing critical data on the impact of illnesses on children's daily functioning. They offer evidence on treatment benefits, improving clinical decision-making and tailoring interventions to individual needs. Traditionally, child-specific PROMs have often overlooked children's perspectives, relying instead on input from health professionals or parents. This can lead to measures that miss outcomes important to children, risking content validity and responsiveness.
Developing a New PROM for Pediatric CFS/ME
The study in question sought to fill this gap by developing a PROM through qualitative research with children. The new measure was pre-tested using cognitive interviews with children diagnosed with CFS/ME, aiming to ensure the PROM's relevance and comprehensibility. Key findings from the study include:
- Content and Item Phrasing: Initial cognitive interviews revealed that certain items were repetitive or unclear. Based on feedback, 12 items were removed or merged, 26 items were revised, and 9 new items were added to better capture the children's experiences.
- Timeframe: The original one-week recall period was found to be insufficient, as children felt it did not represent their general state. A two-week timeframe was introduced, which was preferred by most participants.
- Response Options: The frequency response options were changed to interference options (e.g., "With no difficulty" to "Not able to do") to better capture the impact of activities on children with CFS/ME.
Implementing the Findings in Practice
Practitioners can leverage these findings to improve their practice in several ways:
- Adopt Child-Centric Measures: Ensure that PROMs used in clinical settings are developed with direct input from children. This enhances the relevance and accuracy of the measures.
- Use Appropriate Timeframes: Consider longer recall periods (e.g., two weeks) to capture a more accurate representation of the child's condition.
- Customize Response Options: Utilize interference response options to better understand the impact of activities on the child's well-being.
Encouraging Further Research
The study also highlights the need for further cognitive interviews with younger children (8-10 years old) to confirm the acceptability and content validity of the new PROM across all age groups. Practitioners are encouraged to engage in or support further research to refine and validate these measures, ensuring they meet the highest standards of reliability and validity.
To read the original research paper, please follow this link: Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME): cognitive interviews with children.
