Table 2 Results from each round, percentage of agreement for each area and the consequent decisions made

%

Areas where consensus was not reached:

Round 1 findings (overall %, unless otherwise stated) and any decisions made in italics

 Ask how long a symptom has been present

Yes –

HCPs 100% (12/12)

Patients 88.9% (16/18)

Overall 93.3% (28/30)

Choice of PROMs:

 • EORTC-OV28

 • FACT-O

 • MDASI-OC

 • MOST

 • PRAE

 • PRO-CTCAE

(1 = not at all, 7 = very much)

EORTC – HCPs mean 5.75; patient mean 6.12

FACT-O – HCPs mean 5.25; patient mean 5.82

MDASI-OC – HCPs mean 4.58; patient mean 5.59

MOST – HCPs mean 6.00; patient mean 6.24

PRAE – HCPs mean 6.08; patient mean 6.18

PRO-CTCAE – HCPs mean 5.08; patient mean 6.00

MDASI-OC and FACT-O not rated highly so discarded in Round 1; PRO-CTCAE kept due to patient score.

 Ask how frequent the symptom has been experienced

Yes –

HCPs 83.3% (10/12)

Patients 88.9% (16/18)

Overall 86.7% (26/30)

Frequency of completion

(Options: 4 monthly, 3 monthly, 2 monthly, monthly, 6 weekly, other)

4 monthly - 0

3 monthly – 36.7% (11/30)

2 monthly – 26.7% (8/30)

Monthly – 20% (6/30)

6 weekly – 13.3% (4/30)

Other – 3.3% 1/30

4 monthly, 6 weekly, ‘other’ discarded in Round 1.

 Ask if symptom has got better / worse / not changed recently

Yes –

HCPs 100% (12/12)

Patients 88.9% (16/18)

Overall 93.3% 28/30)

Timeframe/period of reporting

(Options: Last day, last week, last 2 weeks, last month, since last reported)

Last week – 23.3% (7/30)

Last 2 weeks – 23.3% (7/30)

Last month – 23.3% (7/30)

Since last reported – 23.3% (7/30)

Last day – 6.7% (2/30)

Last day option discarded in Round 1.

 Ask about ongoing toxicity to chemotherapy

Yes –

HCPs 75% (9/12)

Patients 83.3% (15/18)

Overall 80% (24/30)

 Ask questions to screen for psychological wellbeing

Yes –

HCPs 91.6% (11/12)

Patients 72.2% (13/18)

Overall 80% (24/30)

List of non-physical holistic needs –

select which items should be presented to patients to indicate if they are concerned (e.g. travel insurance, sexual, emotional)

50% (15/30) felt should include all areas

Highest individual items were:

Emotional 40% (12/30),

Psychological 33.3% (10/30)

2 patients said ‘none of areas’

Weight change question

Highest scoring option “Have you been concerned about changes in your weight?”

HCPs 75% (9/12)

Patients 61.1% (11/18)

Overall 66.7% (20/30)

Other options discarded in Round 1.

Areas consulted on:

Round 2 findings (overall %, unless otherwise stated)

 Frequency of completion

  • 3 monthly

  • 2 monthly

  • Monthly

• 3 monthly 68.4% (13/19; 6/11 patients, 7/8 HCPs)

• 2 monthly 15.8% (3/19; 2/11 patients, 1 HCPs)

• monthly 15.8% (3/19) – all patients

 Choice of PROMs (tick ONE option)

  • EORTC-OV28

  • MOST

  • PRAE

  • PRO-CTCAE

• 10.5% (2/19; 1 patient, 1 HCPs)

• 26.3% (5/19; 1 patient, 4 HCPs)

• 42.1% (8/19; 5 patient, 3 HCPs)

• 21.1% (4/19; all patients)

 Timeframe/period to reflect on when answering symptom questions:

• Last week 15.8% (3/19; all patients)

• 2 weeks 47.4% (9/19; 5 patient, 4 HCPs)

• Last month 21.1% (4/19; 1 patient, 3 HCPs)

• Since last reported 15.8% (3/19; 2 patient, 1 HCPs)

 List of non-physical holistic needs

Part 1: “Would a page like this be acceptable to you?” and

Part 2: should patients be able to tick which issues they’d like specific advice/contact with their clinical/CNS about?

Yes to part 1 –

Overall 89.5% (17/19)

HCPs 100% (8/8)

Patients 81.8% (9/11)

Yes to part 2 –

HCPs 100% (8/8)

Patients 90.9% (10/11)

Overall 94.7% (18/19)

Final decisions made:

 Provision of self-management advice

(Options: yes, unsure, no, other)

Yes –

Overall 26.3% (5/19)

HCPs 62.5% (5/8)

Patients 0

Other –

2 patients chose ‘other’ indicating they’d want option to speak to nurse over the phone.

Split between ‘yes’ amongst HCPs, and no/unsure amongst patients.

Free text comments suggested that at least contact details should be provided.

Final decision to include self-management advice for mild symptoms, in particular telephone contact details for CNS team.

No –

Overall 31.6% (6/19)

HCPs 25% (2/8)

Patients 36.4% (4/11)

Unsure –

Overall 31.6% (6/19)

HCPs 12.5% (1/8)

Patients 45.5% (5/11)

 Ask about medication use in relation to symptoms experienced

Yes include

 Would this question ‘Have you been concerned about changes in your weight?’ be acceptable?

Yes –

HCPs 100% (8/8)

Patients 81.8% (9/11)

Overall 89.5% (17/19)

“Unexpected” weight changes were always the focus of this item, and emphasised again in Round 2 free-text comments - item changed to “Have you been concerned about unexpected changes in your weight?”