1.01 Introduction & methodology

1.02 Position of study

4.01 Discussions about biomarker testing

4.02 Experience with biomarker testing

4.03 Conversations at diagnosis

4.04 Discussions about clinical trials

4.05 Description of conversations at diagnosis

4.06 Decision-making changing over time

4.07 Decision-making changing over time – reasons for changes

4.08 Decision-making changing over time – reasons for no changes

4.09 Decision-making major considerations

4.10 Decision-making minor considerations

4.11 Decision-making no considerations

4.12 Treatment goals

4.13 Description of mild side effect

4.14 Description of severe side effects

4.15 Change to feel as though a treatment has worked

4.16 What it means when treatments work

4.17 Clinician understanding of impact of condition

4.18 Compliance with treatment

2.01 Participants

2.02 Other conditons

2.03 Subgroups

2.04 Baseline health

5.01 Travel to treatment

5.02 Private health insurance status

5.03 Consideration of public/private status

5.04 Consideration of use of insurance

5.05 Treatment as a public/private patient

5.06 Treatment in public or private systems

5.07 Ability to afford medical appointments

5.08 Ability to afford filling prescriptions

5.09 Ability to pay for basic necessities

5.10 Additional care costs

5.11 Work status changes

5.12 Work status changes for partner/carer

5.13 Changes in income

5.14 Monthly out of pocket costs

5.15 Impact of monthly out of pocket costs

5.16 Cost coverage

5.17 Access to a compassionate access program

5.18 Overall experience of cost

5.19 Reasons for cost burden

5.20 Reasons for no cost burden

3.01 Date of diagnosis

3.02 Time to diagnosis

3.03 Experience of symptoms before diagnosis

3.04 Experience of symptoms before diagnosis – QoL scale.

3.05 Symptoms that led to diagnosis

3.06 Accessing medical attention

3.07 Diagnostic process

3.08 Type of investigations

3.09 Number of investigations

3.10 Time between tests and diagnosis

3.11 Number of appointments taken to get a diagnosis

3.12 Costs incurred at diagnosis

3.13 Amount paid at diagnosis

3.14 Impact of costs incurred at diagnosis

3.15 Health professional delivering diagnosis

3.16 Location of diagnosis

3.17 Discussions about biomarker testing

3.18 Understanding of prognosis

3.19 Understanding of condition

3.20 Support at diagnosis

3.21 Information at diagnosis

6.01 Main treatment provider

6.02 Wait times for specialist review

6.03 Travel to main management

6.04 Experience of respect

6.05 Treatments experienced

6.06 Allied health professionals accessed

6.07 Use of complementary therapies

6.08 Lifestyle changes

6.09 Clinical trial discussions

6.10 Clinical trial participation

9.01 Symptoms needing ongoing management

9.02 Overall impact on quality of life

9.03 Negative aspects related to quality of life

9.04 Positive aspects related to quality of life

9.05 Everyday activities to manage condition

9.06 Impact on mental and emotional health

9.07 Activities to manage emotional health

9.08 Impact on relationships

9.09 Reasons for an impact on relationship

9.10 Burden on family

9.11 Examples of additional burden on families

9.12 Vulnerability

9.13 Urgent situations

7.01 Access to support services

7.02 Coordination of care

7.03 Care received

7.04 Understanding of warning signs and symptoms

7.05 Awareness of tests, treatments and follow up planned

7.06 Understanding of suitability of treatment

7.07 Understanding of reason for having a test or treatment

7.08 Knowing advantages and disadvantages of treatments

7.09 Access to additional services

7.10 Access to help with emotional impact

7.11 Understanding own responsibilities in relation to treatment plan

7.12 Access to help from staff with practical arrangements

7.13 Awareness of financial entitlements

7.14 Health professional awareness of emotional health

7.15 Whether satisfaction with healthcare was a factor in care

7.16 Whether the health of family and carers was a factor in care

7.17 Certainty about specifics of treatment plan

7.18 Understanding of access to care out of business hours

7.19 Understanding of health professionals involved in care

8.01 Information subject matter accessed

8.02 Information subject matter searched

8.03 Sources of information that are trusted

8.04 Where information is accessed from

8.05 Information that is helpful

8.06 Information that is not helpful

8.07 Confidence in interpreting information

8.08 Preferred methods of information and communication

8.09 Timing of information (receptiveness)

8.10 Experience of communication

8.11 Experience of positive communication

8.12 Experience of negative communication

10.01 Effectiveness of treatment types

10.02 Symptoms important to be controlled with treatment

10.03 Aspects of treatments considered when making-decisions

10.04 Aspects for decision-makers to prioritise

10.05 Expectations of future treatments

10.06 Expectations of future information

10.07 Expectations of future health professional communication

10.08 Expectations of future patient support

10.09 Aspects of the health system patients are grateful for

10.10 Messages to decision-makers

10.11 What people wished they knew sooner

10.12 Changes people would make about their experience in hindsight