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.