Table 6 Results of the cognitive interviews and changes made to the survey

Demographic questions

No response available for young people deferring a year of education to have treatment

Added response: Taking a break from education

PedsQL™

Instructions ask respondents to reflect on the past month. Some respondents found their situation varied too much in a month (i.e. chemotherapy cycles) so they wanted to put two different answers to cover how they felt over the past month

Used the acute version rather than standard version, which reflects on the past 7 days.

The ‘How I get along with others’ section:

No changes could be made to this section

● Older young people who were working did not necessarily compare themselves just to their age group/other young people, but their colleagues and other young adults generally;

● Young people with children said they often did not see many other young people their age and if they did then they also did not compare themselves with young people but other parents. A suggestion was made to ask how they got on with family rather than peers.

The ‘About work/studies’ section was problematic for those who were not in work, or education in the past month.

Additional text added to reflect other life stage options (school, training, university). As advised by the author, if this is not completed, the total score will be calculated without the domain included.

Before Diagnosis

Difficulty in answering a question related to the time between symptom and diagnosis if some symptoms were earlier than those that they thought were related to cancer.

Amend the wording to ask respondents specifically when they noticed a symptom they thought might be cancer.

Amending a question to make it clear that the question was asking for experience about when they first thought something was wrong.

Amending the routing for a question so that those who went to A&E were not asked whether this contact was NHS or private.

The word ‘consultant’ was added to the code ‘hospital doctor’ as this is how they were referred to.

The code ‘Hodgkin's disease’ was amended to ‘Hodgkin's disease/lymphoma’ while the abbreviation ‘A.L.L.’ was also added to the code ‘Acute lymphoblastic leukaemia’ to make sure the options covers all the possible phrases that respondents were using.

Place of care

Simplified the wording of questions related to choice.

Routing the text so that the phrase ‘Other than visits to A&E (Casualty)’ is only shown if they have been to A&E recently.

Treatment

Unable to answer a question related to treatment choice when there was no choice.

Adding a code ‘Only one possible treatment was available’.

Did not understand the term ‘complementary therapy’.

Added a definition

Clinical trials

Did not understand what a clinical trial was.

Added a definition

Communication and coordination of care

Did not understand the term ‘nurse specialist’.

Added a definition

Education

Most respondents chose the final response for a question asking about the amount of time off school etc. because of being unwell.

Changes were made to the time period responses.

Employment

Changed the wording from ‘why’ to ‘for what reasons’ [have you not told your employer…]

The words ‘my’ and ‘treatment’ were added to questions on the effects of cancer on employment.

Changed the wording of ‘why’ to ‘for what reasons’ [have you decided not to go for this job].

A code ‘want to be/stay close to my friends and/or family’ was added to the question about changing job.