This section presents the results of the Delphi process and how consensus and stability evolved over the RD1-RD3 by looking at:
The composition of the expert panel
Agreement percentages
The evolution of statements
The support of statements by the expert panel.
Thirty-five participants were initially invited to participate in the study, and 27 responded and completed round one, 23 participants responded and completed round two, and 20 participants completed round three (Fig. 1). The 3 rounds were successfully executed in the planned 12-week time frame.
Participant demographics: RD 1–3
Table 1 describes the detailed demographic information of the participants during each round. The largest professional representation of the experts during round 1 were the combined group of urologists (30%), followed by the combined group of sexologists (26%) followed by the physiotherapists (22%). This trend remained consistent during round 2 except for the sexologists making up the majority of the group at 30%. This was similar in round 3 with the sexologists constituting 30% of the expert group and the urologists and physiotherapists each representing 25%.
The ratio of male to female participants were equally split throughout the rounds. Two thirds of the participants had a minimum of 15 years’ or more experience in the field. The overwhelming majority of the participants were qualified at Masters level or PhD throughout the rounds (R1: 78%, R2: 83% R3: 80%). Most participants were practicing in the private sector (74%).
Table 1:Participant Demographics
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Round 1
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Round 2
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Round 3
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Number
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27
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23
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20
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Age
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31-40
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5 (19%)
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3 (13%)
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2 (10%)
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41-50
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11 (41%)
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9 (39%)
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8 (40%)
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51-60
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8 (30%
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8 (35%)
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8 (40%)
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>61
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3 (11%)
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3 (13%)
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2 (10%)
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Gender
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Male
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13 (48%)
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11 (48%)
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9 (45%)
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Female
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14 (52%)
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12 (52%)
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11 (55%)
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Profession
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Oncologist
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4 (15%)
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3 (13%)
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2 (10%)
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Physiotherapist
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6 (22%)
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5 (22%)
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5 (25%)
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Psychologist
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2 (7%)
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2 (9%)
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2 (10%)
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Sexologist (with a medical background i.e. a GP)
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3 (11%)
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3 (13%)
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2 (10%)
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Sexologist (with a psychology background)
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4 (15%)
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4 (17%)
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4 (20%)
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Urologist (involved in brachytherapy/radiation therapy)
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3 (11%)
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2 (9%)
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2 (10%)
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Urologist (performing radical prostatectomies)
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5 (19%)
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4 (17%)
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3 (15%)
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Highest Academic Qualification
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Bachelor’s Degree
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3 (11%)
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2 (9%)
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2 (10%)
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Honours Degree
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3 (11%)
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2 (9%)
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2 (10%)
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Master’s Degree
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15 (56%)
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13 (57%)
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11 (55%)
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PhD
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6 (22%)
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6 (26%)
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5 (25%)
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Health Sector
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Government
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1 (4%)
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1 (4%)
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1 (5%)
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Private
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20 (74%)
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17 (74%)
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15 (75%)
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Private, Govt and Academic
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2 (7%)
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2 (9%)
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2 (10%)
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Private and Academic
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4 (15%)
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3 (13%)
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2 (10%
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Years of Experience
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<5 years
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1 (4%)
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5-10 years
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4 (15%)
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4 (17%)
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3 (15%)
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11-15 years
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4 (15%)
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4 (17%)
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3 (15%)
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16-20 years
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6 (22%)
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3 (13%)
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3 (15%)
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>20 years
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12 (44%)
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12 (52%)
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11 (55%)
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Statement agreement between participants: RD 1–3
The agreement for each statement for Rd1-3 is presented in Table 2. The results include the total responses received for each round, and percentage breakdown between the strongly agree, agree, neutral, disagree and strongly disagree options.
Table 2
Round 1–3 agreement results for statement 1–10
| | Responses Received | % Agreement |
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Statement | Round | Total Received | Eligible responses | Out of Scope | Strongly Agree | Agree | Neutral | Disagree | Strongly Disagree |
Statement 1 | R1 | 27 | 26 | 1 | 53,8% | 34,6% | 3,8% | 0,0% | 7,7% |
R2 | 23 | 23 | 0 | 78,3% | 13,0% | 4,3% | 4,3% | 0,0% |
R3 | - | - | - | - | - | - | - | - |
Statement 2 | R1 | 27 | 25 | 2 | 60,0% | 40,0% | 0,0% | 0,0% | 0,0% |
R2 | 23 | 23 | 0 | 91,3% | 8,7% | 0,0% | 0,0% | 0,0% |
R3 | - | - | - | - | - | - | - | - |
Statement 3 | R1 | 27 | 27 | 0 | 59,3% | 37,0% | 0,0% | 3,7% | 0,0% |
R2 | 23 | 23 | 0 | 82,6% | 17,4% | 0,0% | 0,0% | 0,0% |
R3 | - | - | - | - | - | - | - | - |
Statement 4 | R1 | 27 | 27 | 0 | 59,3% | 29,6% | 3,7% | 0,0% | 7,4% |
R2 | 23 | 23 | 0 | 73,9% | 26,1% | 0,0% | 0,0% | 0,0% |
R3 | 20 | 20 | 0 | 0,65 | 0,2 | 0 | 0 | 0,15 |
Statement 5 | R1 | 27 | 27 | 0 | 44,4% | 33,3% | 0,0% | 14,8% | 7,4% |
R2 | 23 | 23 | 0 | 65,2% | 21,7% | 4,3% | 8,7% | 0,0% |
R3 | 20 | 20 | 0 | 0,7 | 0,15 | 0 | 0,1 | 0,05 |
Statement 6 | R1 | 27 | 26 | 1 | 42,3% | 46,2% | 11,5% | 0,0% | 0,0% |
R2 | 23 | 23 | 0 | 65,2% | 30,4% | 4,3% | 0,0% | 0,0% |
R3 | 20 | 20 | 0 | 0,75 | 0,15 | 0 | 0 | 0,1 |
Statement 7 | R1 | 27 | 27 | 0 | 48,1% | 37,0% | 7,4% | 7,4% | 0,0% |
R2 | 23 | 23 | 0 | 56,5% | 39,1% | 0,0% | 4,3% | 0,0% |
R3 | 20 | 20 | 0 | 0,7 | 0,15 | 0 | 0,1 | 0,05 |
Statement 8 | R1 | 27 | 27 | 0 | 51,9% | 37,0% | 3,7% | 7,4% | 0,0% |
R2 | 23 | 22 | 1 | 59,1% | 22,7% | 13,6% | 4,5% | 0,0% |
R3 | 20 | 20 | 0 | 0,7 | 0,2 | 0 | 0 | 0,1 |
Statement 9 | R1 | 27 | 27 | 0 | 59,3% | 25,9% | 3,7% | 11,1% | 0,0% |
R2 | 23 | 23 | 0 | 73,9% | 21,7% | 0,0% | 4,3% | 0,0% |
R3 | - | - | - | - | - | - | - | - |
Statement 10 | R1 | 27 | 27 | 0 | 59,3% | 29,6% | 11,1% | 0,0% | 0,0% |
R2 | 23 | 23 | 0 | 69,6% | 21,7% | 4,3% | 4,3% | 0,0% |
R3 | - | - | - | - | - | - | - | - |
Statement 1
Please refer to box 1.
Box 1 : Agreement, statement support and statement evolution for statement 1
Agreement and statement support for statement 1 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | n/a |
| Strongly Agree | 54% | 78% | n/a |
Statement Support | Mean | 1,60 | 1,23 | n/a |
| Standard Deviation | 0,94 | 0,58 | n/a |
| Range | 1–4 | 1–3 | n/a |
Evolution for Statement 1 R1: Have you experienced involuntary loss of urine associated with sexual arousal during the last 3 months. R2: Have you experienced involuntary leaking of urine associated with sexual arousal (besides during an orgasm)? *Arousal can be defined as the state of being sexually excited”. |
Round 1
The word “loss” and “arousal” was found to be problematic and replaced with “leaking” and “arousal (besides during an orgasm)”. A definition of arousal was suggested and included in round 2. Adjustments were proposed related to the Likert scale that was used, and the “never to always” scale was replaced with a “very rarely to very frequently” scale. One expert (a urologist) stated that this was not a side effect, especially not after brachytherapy.
Round 2
It was suggested that “with or without a partner” and “with or without an erection” needed to be added to the definition of arousal. Consensus was reached.
Statement 2
Please refer to box 2
Box 2: Agreement, statement support and evolution of statement 2
Agreement and statement support for statement 2 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | n/a |
| Strongly Agree | 60% | 91% | n/a |
Statement Support | Mean | 1,40 | 1,09 | n/a |
| Standard Deviation | 0,61 | 0,29 | n/a |
| Range | 1–2 | 1–2 | n/a |
Statement evolution for statement 2 R1: Have you experienced involuntary loss of urine associated with orgasm during the last 3 months R2: Have you experienced any involuntary leaking of urine during an orgasm? |
Round 1
It was suggested that “with your orgasm” be replaced with “during an orgasm”, “loss” to be replaced with “leaking”. There was confusion between “orgasm” and “ejaculation”,
Round 2
The experts asked that a statement needed to be added that an orgasm may occur with or without ejaculation. Consensus was reached.
Statement 3
Please refer to box 3
Box 3: Agreement, statement support and evolution of statement 3
Agreement and statement support for statement 3 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | n/a |
| Strongly Agree | 59% | 83% | n/a |
Statement Support | Mean | 1,44 | 1,17 | n/a |
| Standard Deviation | 0,58 | 0,39 | n/a |
| Range | 1–3 | 1–2 | n/a |
Statement evolution for statement 3 R1: Within the last 3 months, when you have had an orgasm, how would you characterize he intensity compared to before your prostate cancer treatment R2: Are you able to achieve an orgasm, and if yes, how would you rate the intensity of your orgasm? |
Round 1
In relation to the wording some experts thought that the statement implied that an orgasm was already being achieved. The first part of this statement was subsequently changed to establish whether an orgasm was being achieved. Other suggestions required an amendment to the response on the Likert scale by changing the wording from a “decrease to increase scale to “much less to much more scale”.
Round 2
It was suggested to swap the order of statement 2 and 3 to improve the flow of questioning. This was implemented in the final round. Consensus was reached.
Statement 4
Please refer to box 4
Box 4:
Agreement and statement support for statement 4 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | 20 |
| Strongly Agree | 59% | 74% | 83% |
Statement Support | Mean | 1,54 | 1,26 | 1,65 |
| Standard Deviation | 0,89 | 0,45 | 1,09 |
| Range | 1–4 | 1–2 | 1–2 |
Evolution for statement 4 R1: Within the last 3 months, have you experienced pain or discomfort when you had an orgasm R2: Have you experienced pain during an orgasm; if yes, how often does this occur; if applicable, in what area of your body do you experience the pain during an orgasm; if applicable, please describe your pain experienced during an orgasm and finally, please rate the pain you have described on the following scale (NPRS). R3: How often have you experienced pain during an orgasm; If applicable, in what are of your body have you experienced pain during an orgasm; if applicable, please describe your pain that you experienced during an orgasm; please rate the pain described above on the following scale |
Round 1
Suggestions were made to add a description of the area of symptoms, and to allow a way to quantify/measure the pain on a scale. This question was elaborated in round 2 to include frequency value to how often symptoms occur, a measuring capacity using the numeric pain rating scale (NPRS) and the allowance for descriptive words in the answers to allow for more detail on area of symptoms and descriptions of symptoms.
Round 2
A suggestion was made to replace the NPRS with the visual analogue scale. This was rejected due to the fact that sizing of the scale may change on different screens/platforms losing its reliability.
Round 3
A comment was made to simply state “Have you… instead of how often have you “. Another comment was made that the description of the patient’s pain would not be valuable, as it could not be used to distinguish different types of pain.
Statement 5
Please refer to box 5
Box 5:
Agreement and statement support for statement 5 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | 20 |
| Strongly Agree | 44% | 65% | 70% |
Statement Support | Mean | 1,85 | 1,41 | 1,50 |
| Standard Deviation | 0,95 | 0,71 | 0,89 |
| Range | 1–4 | 1–4 | 1–4 |
Evolution for statement 5 R1: Within the last 3 months, have you experienced an orgasm without ejaculating?” This statement aimed to identify anejaculation R2: When you ejaculate, has the volume of ejaculatory fluid decreased; If Yes, how much has the volume of ejaculatory fluid decreased? R3: When you ejaculate, has the volume of ejaculatory fluid decreased; If Yes, how much has the volume of ejaculatory fluid decreased? |
Round 1
The urologists on the panel expressed strong concern that this statement may be misleading to patients, as anejaculation is a given consequence for most post- prostatectomy patients. This was addressed in round 2, where the question was first asked whether ejaculation is able to occur. There were also concerns that some men may associate the ejaculation event as the actual orgasm event, and not be aware that an orgasm is possible without ejaculating.
Round 2
A comment was once again made whether prostatectomy patients would get confused, as they will not be able to ejaculate after their treatment. It was thought that the question may confuse patients and that it may leave patients concerned that their surgery was performed poorly/incorrectly.
Round 3
Suggestions were made to remove sections of the question. Some experts also expressed that it would be inappropriate to ask about a change in volume of ejaculate.
Statement 6
Please refer to box 6
Box 6:
Agreement and statement support for statement 6 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | 20 |
| Strongly Agree | 44% | 65% | 70% |
Statement Support | Mean | 1,52 | 1,32 | 1,45 |
| Standard Deviation | 0,72 | 0,54 | 0,94 |
| Range | 1–3 | 1–3 | 1–4 |
Evolution of statement 6 R1: Have you experienced one or more of the following sensory disturbances in the penis in the last 3 months? R2: “Have you experienced any sensory changes in your penis; if yes, please indicate the sensory changes that you have experienced; if applicable, describe in your own words any other sensory changes in your penis you have experienced? R3: Have you experienced any sensory changes in your penis; if yes, please indicate the sensory changes that you have experienced; if applicable, describe in your own words any other sensory changes in your penis you have experienced? |
Round 1
A suggestion was made to include a section for other options that were not mentioned. The word “asleep” was queried, and suggested to be changed to “numb”, which was done.
Round 2
A grammar comment was made relating to the Likert scale and implemented in round 3.
Round 3
Suggestions were made to add the “how problematic” section to this question, similar to some of the other statement. These adjustments were made. Consensus was reached.
Statement 7
Please refer to box 7
Box 7:
Agreement and statement support for statement 7 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | 20 |
| Strongly Agree | 48% | 57% | 70% |
Statement Support | Mean | 1,56 | 1,48 | 1,50 |
| Standard Deviation | 0,75 | 0,59 | 0,89 |
| Range | 1–3 | 1–3 | 1–3 |
Evolution of statement 7 R1: Have you noticed that your penis has become shorter after your prostate cancer treatment, and if so, how much do you estimate it has changed; If you answered yes to the question above, how bothersome is it when you engage in sexual activity? R2: Has your penis become shortened in length; If yes, how problematic is it when you engage in sexual activity? R3: Has your penis become shorter in length; If yes, how problematic is it when you engage in sexual activity? |
Round 1
Suggestions were made to remove the options of how much the decrease in size was estimated at, and to keep the question more general. There were suggestions to change the word “bothersome” which was done in round 2.
Round 2
Some comments were made related to the impact of the penile shortening on self-confidence and self-image, but these were not considered for this questionnaire.
Round 3
Suggestions were made to add a time scale and the partners’ perspective to the question. These suggestions were not considered as the partners perspective was already invited at the start of the questionnaire, and the time scale was already included for referencing purposes.
Statement 8
Please refer to box 8
Box 8:
Agreement and statement support for statement 8 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | 20 |
| Strongly Agree | 52% | 59% | 70% |
Statement Support | Mean | 1,54 | 1,37 | 1,50 |
| Standard Deviation | 0,75 | 0,76 | 0,89 |
| Range | 1–3 | 1–3 | 1–4 |
Evolution of statement 8 R1: Have you noticed a different curvature of your penis after your prostate cancer treatment? If you answered yes to the question above, how bothersome is it when you engage in sexual activity? R2: Has your penis developed any new curvatures; If yes, how problematic is it when you engage in sexual activity? R3: Has your penis developed any new curvatures or bends; If yes, how problematic is it when you engage in sexual activity? |
Round 1
A suggestion was made to change the phrase “different curvature” to “any new curvatures”, as some minor penile curves were deemed normal. One suggestion from a urologist was to remove this question as it was not a known consequence. The same suggestions that were made to change “bothersome” in statement 7 were again made, and changes were implemented in round 2.
Round 2
A statement was made by a urologist that this question does not belong as it does not occur with cancer treatment. A comment was made to replace the word “curvature” with “change in shape.” This was not considered for the final round. Another comment suggested to include the word “bend” along with “curvature”, this was included in the final round.
Round 3
Similar comments were made to statement 7 regarding the partners perspective and time scale. A urologist on the expert panel stated that this side effect was not a consequence of PCa treatment. There was also again a suggestion to include “shape” in this question. This was not included as shape was seen as a misleading inclusion as it could mean many different things.
Statement 9
Please refer to box 9
Box 9:
Agreement and statement support for statement 9 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | n/a |
| Strongly Agree | 59% | 74% | n/a |
Statement Support | Mean | 1,50 | 1,30 | n/a |
| Standard Deviation | 0,75 | 0,56 | n/a |
| Range | 1–3 | 1–3 | n/a |
Evolution of statement 9 R1: Please describe your journey with sexual dysfunction after prostate cancer treatment and/or how has sexual dysfunction impacted your life after prostate cancer R2: Describe your journey with sexual dysfunction and intimacy after prostate cancer treatment; How has this (answer above) impacted your life |
Round 1
Suggestions were made to split the 2 questions completely. It was also suggested to include “intimacy” with the phrase. there were many positive comments regarding the fact that this was an open-ended question, and this would give context to the symptoms.
Round 2
Most panellist agreed that this was an important question, but its appropriateness for inclusion in this quantitative questionnaire was questioned. Comparisons were made with other similar questionnaires that did not have open ended questions. This question was therefore completely removed from the questionnaire.
Statement 10
Please refer to box 10
Box 10:
Agreement and statement support for statement 10 |
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| | Round 1 | Round 2 | Round 3 |
Agreement | Number of participants | 27 | 23 | n/a |
| Strongly Agree | 59% | 70% | n/a |
Statement Support | Mean | 1,33 | 1,26 | n/a |
| Standard Deviation | 0,62 | 0,62 | n/a |
| Range | 1–2 | 1–3 | n/a |
Evolution of statement 10 R1: Is there anything else you want to tell us about your experience or that you think other people going through this or treating people going through this should know R2: is there anything else from your experience with your prostate cancer treatment that you want medical professionals to know; Is there anything you would like other future patients to know about? |
Round 1
It was suggested that the statement be split into two statements, or be rephrased as the question seemed a bit wordy.
Round 2
As with statement 9, most panellist agreed that this was an important question, but its appropriateness for inclusion in this quantitative questionnaire was questioned. Comparisons were made with other similar questionnaires that did not have open ended questions. This question was therefore removed from the questionnaire.