Data Collection
Data was collected via a written
questionnaire completed by the participant. The questionnaire was
developed using both validated scales and items purposely designed by a
team comprised of a dietitian, psychologist, clinical oncologist and
psychosocial researcher. Sociodemographic questions of the participant
covered age, sex, highest level of education, hours worked per week on
average, self-reported weight and height, and relationship to the
patient. Health literacy of participants was assessed using a validated
four-item Brief Health Literacy Scale 28. The four
questions relate to an individual’s ability to read and understand
medical and hospital forms and level of understanding is assessed using
a 5-point Likert scale. Scores range from 0-36. The socio-economic
indexes for areas (SEIFA) index of relative socio-economic advantage and
disadvantage was used to define participant socio-economic status by
postal/zip code 29. Scores range from one through to
10, where 10 indicates high relative socio-economic advantage29.
Patient demographic characteristics collected included sex, date of
birth, cancer type, stage and date of diagnosis, relapse status and
treatment regimen. The information on the patient’s diagnosis, stage,
relapse status and treatment regimen were used to calculate the
Intensity of Treatment Rating 30. The Intensity of
Treatment Rating provides four categories of treatment intensity ranging
from level 1 which indicates the treatment is minimally invasive to
level 4 which indicates the most invasive treatment30. Patient’s current weight and height were also
collected to calculate body mass index (BMI). BMI-for-age percentile and
z-scores were adjusted for age and sex using the Centre for Disease
Control and Prevention growth charts, to allow for comparisons across
age groups. The BMI-for-age percentile was classified as either
underweight (<5th percentile), healthy
weight (5th-84th percentile),
overweight (85th-94th percentile) or
obese (>95thpercentile)31.
One day of dietary intake was assessed using a three-pass 24 hour
dietary recall 32. This method consists of a
structured interview conducted by the study coordinator who asks the
adult caregiver to list everything the child ate or drank during the
previous day. The three-pass 24-hour dietary recall is considered to
have one of the highest validation standards for dietary assessment
methods as the method utilises a very structured interview procedure
that includes three distinct probing sessions (or passes) during the
interview. 32 The 10-item Peds-FAACT:Pediatric - Functional Assessment of Anorexia Cachexia sub-scale was
used as a subjective measure of the severity of food related symptoms
such as taste change and poor appetite 33. Questions
include subjective views of symptoms such as early satiety, nausea,
vomiting and taste changes in the previous seven days. A 5-point Likert
scale (0=not at all to 5= very much) was used to score each question.