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qol research

15 June 2021

A paper on a Quality of Life research study conducted by Kathryn M. Pfeifer et al aims to develop a better understanding of the experiences of parents of children with achondroplasia and to provide qualitative evidence to support the development of a patient-reported outcome (PRO) measure of parent impacts.

How was the study conducted?

Individual and focus group interviews were conducted with parents of children aged 2 to 12 years with achondroplasia in the United States and Spain to gather qualitative data for analysis. Cognitive debriefing (CD) interviews were conducted to ensure parent understanding and item relevance.

Whats is Cognitive debriefing?
Is the process by which an instrument or patient questionnaire is actively tested among representatives of the target population (in this case, parents with children with achondroplasia) and target language group to determine if the respondents (parents) understand the questionnaire the same as the original would be understood. Cognitive debriefing is done to test the level of comprehension or understanding of a translation by the target audience, and/or to test alternative translations. It determines if translations would be deemed inappropriate or confusing by the target population.2

What were the results?

Thirty-six parents participated in individual and focus group interviews. The analysis identified parent impacts in four domains:

  1. Caretaking responsibilities
  2. Emotional well-being
  3. Family
  4. Work
The results of this study informed the development of the Achondroplasia Parent Experience Measure (APEM). Caretaking responsibilities included managing child’s medical care (92%), helping child with self-care (67%), advocating for child (64%), assisting child (56%), and observing/ monitoring child (e.g., to ensure safety; 47%). Impacts on parents’ emotional well-being included worry about the future (75%), worry about child’s physical health (67%), safety concerns (50%), feeling stressed/overwhelmed (44%), and worry about child’s social relationships (42%). Impacts on family and work included family strain (56%), limiting/adapting family activities (42%), and missed work time (50%). CD interviews with an additional 16 parents of children with achondroplasia confirmed understanding and item relevance.

Experts discussed ten caretaking responsibilities that parents of children with achondroplasia have. The most frequently mentioned caretaking responsibilities included managing child’s medical care/treatment:

Impacts on parent caretaking responsibilities
Fig 1. Impacts on parent caretaking responsibilities

The study results provide key data for analysis, improving the team understanding of the experiences of parents of children with achondroplasia and provided qualitative evidence to support the content validity of the APEM. Still, a psychometric study is needed to validate the measure.

What is a psychometric study?
Is related to psychological measurements,which includes the measurement of knowledge, abilities, attitudes and personality traits. Is linked to the study of differences between individuals and involves two major research tasks: the construction of instruments and procedures for measurements and the development and refinement of theoretical approaches to measurements.3

For more information, read the full study below:


1. Pfeiffer KM, et al. Assessing the impacts of having a child with achondroplasia on parent well-being. Qual Life Res. 2021;30(1):203-215. doi:10.1007/s11136-020-02594-3
2. Language Scientific
3. Assessment Psychology 

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