evaluation report post-surgery packs · two types of absorbency levels of incontinence pads (tena),...
TRANSCRIPT
Evaluation ReportPost-Surgery Packs (pilot)
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Content listIntroduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Method . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4-5
Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6-7
Findings (what men said in numbers) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8-10
Findings (what men said in words) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11-15
Findings (what health care professionals said in words) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16-18
Conclusions and long term outcomes (see for bite-size summary) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19
Appendices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20-24
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IntroductionIt is reported that approximately 3,600 men a year in the UK undergo radical prostatectomy as a treatment for prostate cancer. (South West Public Health Observatory). However, the actual number is expected to be far larger considering 40,000 men a year in the UK are diagnosed with prostate cancer and 43% of treatments are not recorded. Men experience a range of side-effects after surgery which can be difficult to cope with, impacting on daily life and routines. We also know that the support and information that men receive to help them understand what to expect during and following surgery, and how to cope with such side-effects, varies greatly across regions and hospitals.
Our aim was to develop a new resource to help support men following surgery for prostate cancer; to ensure that they are provided with the best possible information at the right time, to help them recover as quickly and easily as possible. We developed a pack which was given to men when they decided to opt for surgery to help them understand what side effects to expect, how best to cope with them, and what products and support services are available. For example, the pack included a selection of pads for the men to try out while they were incontinent following surgery. The pack also aimed to support health care professionals (HCPs) deliver quality care, therefore acting as a nudge tool to promote the Charity as a reliable source of support and information and encouraging further uptake of our services.The main objectives for this project were to:•build an understanding of the support and information needs of men undergoing surgery for
prostate cancer•develop a resource that responds to the support and information needs of men undergoing
surgery for prostate cancer• identify best methods for ensuring all men undergoing surgery for prostate cancer have
access to the resource in a timely and appropriate manner• increase the profile of the Charity as a provider of reliable information and improve uptake of
our services.
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MethodTarget populationMen who made the decision to receive surgery (radical prostatectomy) as a treatment for prostate cancer.
Pilot site recruitmentThe Charity aimed to recruit 10 hospital sites to take part in the pilot and distribute packs to men opting for radical prostatectomy. In the first instance ‘warm’ hospital sites in the UK that the Charity had an existing relationship with were asked if they would be interested in taking part in the pilot. Thereafter ‘cold’ hospital sites were contacted throughout the UK and asked to register their interest in taking part. By January 2013, 12 hospital sites were recruited with a good geographical spread across England and Scotland. However, there were no hospital sites from Wales or Northern Ireland.
Patient recruitmentPatients receiving the packs were recruited from men attending pilot hospital sites as in-patients for radical prostatectomy. HCPs were instructed to offer all men in this position the opportunity to take a pack.
Delivery methodThe pilot was delivered by HCPs during face to face consultations with men discussing their treatment (surgery). HCPs communicated the purpose of the post-surgery packs and gave them to the patients.
HCPs were given a guide to inform patients of what the pilot was and why it was being carried out (content mirrored written information provided to patients within the pack). HCPs asked men to read the patient information sheet regarding the pilot and sign a consent form which then allowed the Charity to use any data they provided for research purposes.
Data collectionPatients were asked to provide evaluation data to assess the contents and usefulness of the packs, and how this impacted upon their experience of care. This was achieved through providing all men with an 18 item questionnaire which was inside the pack. Men were asked to complete and post back the questionnaire to the Charity (all information in regards to this was provided at the start of the questionnaire). The questionnaire also asked if the respondent would be willing to complete a 30 minute phone interview. This allowed us to be able to explore their experience of receiving and using the pack in greater depth. HCPs were asked to provide monitoring and evaluation data to help us understand uptake of the pack and to test the effectiveness of the pilot from their perspective to help us understand if changes needed to be made to improve the process. These data came from qualitative interviews carried out with HCPs at the hospital sites.
Monitoring (quality assurance)Quality assurance of pilot delivery was ensured through; • evaluation measures (questionnaire and qualitative interviews)• self-assessment checklist for HCPs (e.g. in which clinical visit was pack supplied and by who)• fortnightly phone calls or emails to relevant hospital staff to ensure the pilot delivery was
taking place and address issues with potential non-delivery/ poor patient recruitment•mid-pilot audit of numbers of packs distributed and issues faced by hospital sites.
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Pack contents• Information for men who have chosen surgery as their treatment choice.
• Information about surgery. It did not include (but signposted to) information about other treatments that might be given in conjunction with surgery.
• Information on what to expect before, during and after surgery. This prepared men for surgery side-effects and covered the recovery process up until their first post-treatment PSA test.
•Common products to help men cope with the side effects of surgery. These included two types of absorbency levels of incontinence pads (TENA), sanitising hand gel and sanitary bags for pad disposal.
•Evaluation questionnaire to test if the aims and objectives of the pilot have been met from the patients’ point of view.
Data analysisWe explored the satisfaction and experience of men who used the pack. An 18 item questionnaire was designed and a schedule for semi-structured qualitative interviews was developed to explore these areas of interest. A schedule for semi-structured qualitative interviews was also developed to explore what HCPs thought about the pack in terms of suitability, content and fit with daily work.
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FindingsPack distributionThe target number of pilot sites was 10. By the end of the recruitment process, 12 hospitals had been recruited. Each of these sites requested the number of packs they thought they would distribute during the pilot. Requests for packs ranged from 12-35. A total of 250 packs were produced by Prostate Cancer UK and a total of 225 packs were distributed during the pilot period.
In addition to the 225 packs distributed, a further five packs were given to a 13th hospital site in Scotland who pulled out of the pilot in February 2013 after not handing out any packs. This site withdrew because they were unable to commit to all aspects of the pilot process. A further 18 packs were given to two hospitals when the pilot period had come to a close. These sites felt men would benefit from being offered the packs after the pilot and they were in a strong position to hand out all of these additional packs. Table 1 displays how many packs were distributed and how many packs we know were given to men during the three months of the pilot.
Table 1. Number of packs requested and given out during the pilot
Region Packs distributed Surgical procedures Packs given out
SE 20 20 20
SE 24 * *
SW 20 4 4
Scotland 24 10 8
NE 18 * *
NE 35 6 6
SE 12 9 7
NW 14 15 14
SE 15 15 15
NW 14 16 14
NE 14 2 2
SE 15 11 11
Scotland ¹5 N/A N/A
NW and SE ²18 N/A N/A
N/A ²2 N/A N/A
250 108 101
* Hospital did not update on the number of packs handed out or surgical procedures since the start of the pilot¹ Hospital sight pulled out of pilot² Additional packs distributed (post pilot)³ Packs retained for information by Prostate Cancer UK
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Figure 1. Number of packs requested and handed out during the pilot
* Hospital has not updated on the number of packs handed out since the start of the pilot.
Table 1 and Figure 1 demonstrate that 101 of the 225 packs distributed to hospital sites were given to men throughout the three month pilot period. The number of radical prostatectomies (surgical procedures) carried out at the hospital sites during the three month pilot period demonstrates that 94% of men who opted for surgery were given a pack. In all 108 procedures took place and 101 men received a pack.
We can see that some hospital sites overestimated how many packs they would be able to give to men during a three month period. This was solely dependent on the number of men attending each hospital who opted for surgery during the pilot period.
It should be noted that two hospital sites were un-contactable throughout the whole of the three month pilot. This was due to long-term absences of our contacts (illness and compassionate leave), and the fact we did not have additional contacts within the hospital sites. When contacted again at the end of the pilot, both hospital sites were unable to give updates on how many (if any) packs they handed out to men throughout the three month period. As a result, 42 packs are unaccounted for.
When these two non-participating sites are removed from the data, we see that 55% of packs were given to men throughout the three month pilot period.
0
5
10
15
20
25
30
35Surgical procedures
Handed out
Requested
Surgical procedures Handed out Requested
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What men said in numbersThroughout the pilot, 101 packs were handed to men. A total of 65 men who received these packs provided questionnaire data for analysis. This represented a good response rate of 64%. Frequency analysis was undertaken using SPSS to explore patient satisfaction (with the pack), their awareness, knowledge and anticipated future behaviour. These results are presented below.
Table 2. Patient satisfaction with pack contents
Reported Percentages (n=65)
SatisfactionCompletely disagree
DisagreeSomewhat disagree
Somewhat agree
AgreeCompletely agree
I was given the pack at a time which was beneficial to help me cope with side-effects of surgery
0 1.5 0 7.7 23.1 67.7*
The health professional was able to effectively answer any questions I had about the pack
0 3.1 1.5 7.7 30.8 56.9*
The information leaflets inside the pack were suitable in terms of;
Detail 0 1.5 0 6.2 30.8 61.5*
Clarity 0 0 0 4.7 18.8 76.6*
Amount 0 0 0 6.2 29.2 64.6*
The pads provided were suitable for the level of incontinence I experienced
0 6.3 1.6 3.1 25 64.1*
The other products provided were useful for me after surgery;
Sanitary bags 0 3.1 1.6 7.8 26.6 60.9*
Hand gel 0 4.6 0 18.5 23.1 53.8*
Wet wipes 0 0 1.5 18.5 29.2 50.8*
*Represents the largest representation in relation to patient satisfaction with pack contents
The data in Table 2 demonstrates that men who used the pack seem to be highly satisfied with all aspects, including when the pack was given to them, how it was explained by health professionals, and the information and products which were provided. The frequency analysis shows that this seems particularly true of preparing men to cope with the side effects of surgery. The information inside the pack also scored highly, as did the incontinence pads provided.
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Table 3. Patient awareness and knowledge
Reported Percentages (n=65)
Awareness and knowledgeCompletely disagree
DisagreeSomewhat disagree
Somewhat agree
AgreeCompletely agree
The pack has made me more aware of what side-effects to expect from surgery
0 0 0 1.6 23.4 75*
The pack has made me more confident in managing the side-effects of surgery
0 0 1.5 16.9 44.6* 36.9
The pack has made me aware of incontinence pads which could be useful at different points in my recovery
0 0 4.6 7.7 36.9 50.8*
The pack has made me aware of other products which could help me cope with the side-effects of surgery
0 3.1 3.1 9.4 48.4* 35.9
I was aware of Prostate Cancer UK as a service and information provider before I received the pack
6.2 4.6 20 29.2* 13.8 26.2
*Represents the largest representation in relation to patient awareness and knowledge
The data displayed in Table 3 shows that a large proportion of men seemed to agree that receiving the pack impacted upon their awareness and knowledge of side effects of surgery and how to cope with them. It also seems to have made men aware of which incontinence pads to use at differing points in their recovery. These data also demonstrate that before men received the pack they were not very aware of Prostate Cancer UK as a service and information provider. In fact, 30.8% (n=20) did not seem to be aware of the Charity in this capacity before they received the pack.
Table 4. Anticipated future behaviour
Reported Percentages (n=65)
Future behaviourCompletely disagree
DisagreeSomewhat disagree
Somewhat agree
AgreeCompletely agree
After receiving the pack, I’m more likely to buy the products like those that were inside the pack to help with my side-effects
0 0 3.1 10.8 46.2* 40
I would recommend such a pack to other men in my position
0 0 0 1.5 9.2 89.2*
After receiving the pack, I’m likely to use other Prostate Cancer UK services in the future
0 1.6 1.6 15.9 25.4 55.6*
*Represents the largest representation in relation to future behaviour
The data displayed in Table 4 demonstrates that a large proportion of men stated that they would be likely to buy similar products to those inside the pack in the future to help them cope with side effects of surgery. All would also recommend the pack to other men in their position. Men also seem likely to use other Prostate Cancer UK services in the future (if required) after receiving the pack.
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Further analysis was carried out. T-test analysis demonstrated that when prior awareness/knowledge of Prostate Cancer UK (before they received the pack) was compared to post pack awareness/knowledge of the Charity, there was a significant increase (t=9.89 (62), p=.001). This suggests that receiving the pack made men more aware of Prostate Cancer UK and increased their likelihood to engage with the Charity’s services in the future. However, it must be noted that the sample size is small which somewhat weakens this finding.
Figure 2. Mean comparison of PCUK service awareness pre and post pack use
0
1
2
3
4
5 Mean
Post pack awareness of PCUK servicesPre pack awareness of PCUK services
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What men said in wordsFive men who received a pack agreed to be interviewed so that we could gain a richer understanding of their satisfaction with different aspects of the pack and add to the quantitative findings. The views of these men are summarised below.
Pad provision is a balancing actThe pads were seen as an important element of the pack. They were essential for men following their surgery and meant that they could feel more confident about their leakage. However, there were those who would have preferred more pads to be included or at least clearer direction as to where they could source more pads. There was also a feeling that more advice was required about when certain absorbency pads should be used. However, it became clear that this is very subjective and different men need different pads at different times. Therefore it is a process of trial and error rather than attempting to provide advice in a one size fits all model.
The pads were fantastic, but if I’d known that I was going to be leaking very little during the night, I wouldn’t have wasted the Level Threes on an evening.
Obviously there weren’t enough (pads), because they reckon this leakage goes on for up to three, four, five months afterwards.
The pads… from memory now, they certainly were very, very useful; and probably, if anything, maybe a couple more of the… a couple more of the sort of level three ones.
I mean, I think maybe a mixture of pads that give you an idea of what’s available, and then some information there as to where you can then get them, if that’s not… I can’t remember whether that was included or not in the pack.
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Education through informationMen saw that information provided inside the pack as educational. It was very informative, easy to understand and helped men feel supported when they were coming to terms with surgery and the side effects they experienced. The information also added a sense of security, confirming what they may have already known. There were calls for better signposting to where pads could be sourced and suggestions to add further advice to help make life easier following surgery.
I mean they really are marvellous, I mean they’re very, very comprehensive, they’re written in a very straightforward language, they avoid technical jargon and they give you a lot of security.
Another part of the pack, with the bladder training, I thought that was, you know, that was excellent because I would sometimes be taken unawares and the bladder training I thought was excellent.
Explaining what the PSA score actually means and why you’re having the test anyway, is brilliant, absolutely brilliant.
It certainly helped, actually. It sort of, you know… I’ve read a lot of stuff on the net, but it’s nice to see it there, which you know is official, rather than from somebody else.
The information was very good, yes. It could have included maybe some indication of where you could buy these pads, and things, because obviously, people are going to need them going forward.
I think it would be very useful to have a checklist of things… if you suffer from this incontinence problem after surgery, or whatever, you could carry such and such with you, or whatever; make certain preparations.
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Complementary sanitary productsIt was clear that the other products contained within the pack were beneficial to men and they could see the usefulness of these. They were seen as complimentary and something which aided hygienic use of and disposal of the pads. These products were valued by the men, which slightly contradicts the feedback from health professionals displayed below.
I know there is information already about what to expect, but maybe a little bit more about what to expect, you know, following the surgery... within the sort of weeks after surgery.
It probably didn’t help me enough in those, sort of, basic things, like getting yourself organised. You just have to figure things out for yourself. I just have to think about things a bit more: I’m going out; I’m going to need this; I need that.
The only thing that I lost, which was a bit irritating… you know the little cards that says this person has a urinary disease? I think two or three of those would’ve been useful.
The air tight bags are fantastic, they are fantastic. If I’m going on a trip or a day out or a weekend away, I found those are invaluable because the last thing you want to do is leave them (used pads) at the place where you’re staying. To pop them in that air tight bag and bring them home with you and I think it’s a... that’s excellent support.
I used the Carex gel a lot. It really helped when I wanted to dispose of pads, especially if I wasn’t in my house or something.
I thought the sanitary bags were a great help.
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HCPs communication and pack deliveryMen were happy with how the pack was explained and given to them by HCPs. However, it seemed that some men did not receive level three absorbency pads.
Comfort in designThe men appreciated the look and feel of the pack generally. It was appropriate in terms of being a healthcare product which men could feel comfortable about using. They liked the fact that it was in a plain bag which they could just wear on their back and leave the hospital with.
I mean, by that time I was trusting them (the HCPs) it was a bit informal. It wasn’t a vast conversation going through it (the pack). It’s, “here’s a package prepared by someone who’s competent; they know the problems, and there’s all the information you’ll need” that’s how it was.
It was handed to me and it was explained to me what was… I mean, I didn’t have time to look at it there and then, but it was explained to me that it was just information and some useful pieces of, you know, kit.
The consultant who gave it to me was absolutely great, yes. It was explained well and it was given to me, you know, it was just… just before I had the op. They gave me the pack. And, yes, I mean, it was useful.
It was very appropriate. And, you know, it went well. So, I just, you know, came home from hospital with it, and it was easy to bring home.
I thought it was absolutely fine, very practical, very. And the actual bag itself, you know, as I say when you’re sort of going anywhere, just to pop the bits and pieces in is really good.
The bag was good. It was comfortable and it was nice that no one knows what’s in it when I take it out and about.
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Wider awareness of Prostate Cancer UKSome men did bring up the fact that they had seen Prostate Cancer UK adverts recently and they were aware of celebrity Bill Bailey’s link to the Charity.
There were the adverts by Bill Bailey. I thought they were quite good. They probably have more effect at raising awareness because, you know, he’s sort of a well-known character, isn’t he?
A friend of mine, she saw… the ad and I knew about me, and contributed. So, you know, it was positive from that point of view.
I mean, I think there’s been a lot of advertising recently as well. I’ve noticed it. And I see a lot of postage stamps, you know, a lot of the postmarks on envelopes coming with Prostate Cancer UK on them.
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What health care professionals said in wordsThree health professionals who took part in the pilot agreed to be interviewed so that we could gather their views about the pack in terms of suitability, content and ease of delivery. The views of these HCPs are summarised below.
Thorough and detailed informationThere was a general feeling among the HCPs that the pack content was of high quality. This was particularly true of the information which was given to men. It was agreed that this was vital in preparing men for the after-effects of surgery and allowing them to understand complex issues clearly.
I found that the information is very, very good. I wouldn’t change anything.
The information was very good; nice and detailed and easy to understand for the men.
It was all there, so it was good. It was like a bit of a framework. You know? You could just work through what the men really needed to know.
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Well thought out productsHCPs regarded the products in the bag as excellent. The pads gave men choice and variety to find out which worked best for them. The other products allowed men to dispose of the pads hygienically which was seen as important. However, there was a feeling that perhaps the Charity had been too generous with the amount of pads and other products provided. There were also concerns that men may struggle to get hold of pads once those in the packs had run out.
Incredibly generous (the pack). Certainly from the patients that I gave it to, they very much appreciated it and were very happy to be part of the trial.
They (men) also had choices of pads, which is important and they were told how to dispose them. So I think overall it was a very nicely presented little package.
I perhaps wouldn’t have been so generous. I would have put though all those items in but perhaps not as many. I mean the little bags to put the pads in is a nice bonus but, you know… Not really necessary.
I think as long as we’re seen to be supportive of the patient, and can advise them where they can get more (pads), I think that’s fair enough in this, you know, environment of recession and everything.
I am slightly concerned about patients expecting that they’ll be able to get access to the products in the community once they’re out (of pads), but that may not be the case for many of them.
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Acceptable style and complimentary to working practiceThe HCPs felt that the style and design of the pack was well thought out and was very acceptable to the men who received it in terms of its look, feel and discreetness. There was also a feeling that the pack as a whole ‘product’ complimented the work of the HCPs and ensured a constant and high quality delivery of care to men.
Usually, previously, the men have had somebody with them, their wife, or someone; they’ve tended to hand the bag, the carrier bag over to them. But the men went away with it swung around their shoulder, so they were obviously comfortable to carry it.
It’s more of a sort of male-friendly kind of thing than… I can’t think of whatever else they would put it in, but especially a carrier bag. But these are certainly something that are a bit more male-friendly, if you like.
There was obviously some sort of male contribution to it because of the fact that it was, sort of, black, no logos on it, the fact that it’s black, you know so it’s a male colour, the fact that it was sort of like a rucksack so it wasn’t sort of like a handbag or a shoulder bag.
All my patients that I gave it to were very comfortable with it and quite happy to, sort of, wear it on their shoulder or on their back and not feel that somebody knew that they were carrying pads in it – so it was very discreet.
It would be really nice to be able to give something like that (the pack) because at the moment we, sort of, we bring in old supermarket bags to put the pads in because you don’t want people walking out with sort of NHS bags.
We do provide a selection of pads for patients and we usually give four of the sort of bigger ones and four of the smaller ones. And then, you know, signpost them to where they can get things. But it would be quite nice to do it in a, sort of, more professional way, I would say, like with this pack.
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Conclusions and long-term outcomesThis evaluation is limited by the methodology of the pilot in that there was no comparison between men who received the post-surgery pack and men who received usual care. This makes it difficult to draw definite conclusions as there is a heavy reliance on frequency analysis. The evaluation is also limited somewhat by the small sample size (n=65). Having said that, the findings do demonstrate that the charity has developed a pack which is acceptable to men and which seems to enhance patient experience of aftercare (post-surgery). It seems that the pack aids knowledge and allows men to prepare effectively for the side effects of surgery. Health care professionals indicate that the pack boosts working practices and provides a tool for better care provision.
The post-surgery pack does require refinement so that it can become a more effective service offering. While the contents and design of the pack should remain, there needs to be consideration of the amount of products and information provided. These considerations are highlighted in the recommendations below. There should also be refinement to operational processes and efforts made to ensure greater ‘buy-in’ from hospital sites to ensure the quality of the service is not diminished.
The long term outcomes are clear. Prostate Cancer UK has a model for providing a new service which can benefit men with prostate cancer, and which aids health care professionals in their work, giving the charity an opportunity to reduce national inequalities in care provision following radical prostatectomy.
Appendix 1: Patient questionnaireBelow are some statements. Please circle the number that best applies to how much you agree with the statement. With 0 meaning you completely disagree and 5 meaning you completely agree with the statement.
Please post this questionnaire back to us around four weeks after you have received the pack and had a chance to look through and use its contents. Your responses will be treated as confidential.
Thank you for helping us improve our service.
Satisfaction1. I was offered the pack at a time which was beneficial to help me cope with side-effects of surgery.
0 1 2 3 4 5
2. The health professional was able to effectively answer any questions I had about the pack.
0 1 2 3 4 5
3. The information leaflets inside the pack were suitable in terms of:
Detail0 1 2 3 4 5
Clarity0 1 2 3 4 5
Amount0 1 2 3 4 5
4. The pads provided were suitable for the level of incontinence I experienced.
0 1 2 3 4 5
5. The other products provided were useful for me after surgery:
Sanitary bags0 1 2 3 4 5
Hand gel0 1 2 3 4 5
Wet wipes0 1 2 3 4 5
Awareness and knowledge1. The pack has made me more aware of what side-effects to expect from surgery.
0 1 2 3 4 5
When completed please return this form to:
Service Development Team, Prostate Cancer UK, RRLJ-BBSU-SUST, London, W6 0LE
Completely disagree
Completely agree
Continue on the next page.
2. The pack made me more confident of managing the side-effects of surgery.
0 1 2 3 4 5
3. The pack has made me aware of incontinence pads which could be useful at different points of my recovery.
0 1 2 3 4 5
4. The pack has made me aware of other products which could help me cope with the side-effects of surgery.
0 1 2 3 4 5
5. I was aware of Prostate Cancer UK as a service and information provider before I received the pack.
0 1 2 3 4 5
Future 1. After receiving the pack, I’m more likely to buy the products like those inside the pack to help with my side-effects.
0 1 2 3 4 5
2. I would recommend such a pack to other men in my position.
0 1 2 3 4 5
3. After receiving the pack, I’m likely to use other Prostate Cancer UK services in the future.
0 1 2 3 4 5
GeneralConsidering the pack in general, what would you like to see changed or improved to make the pack better for men? (For example, was anything missing from the pack?)
As you have taken part in this pilot service, we would like to interview you over the telephone to allow us to explore your views in more detail. This will take 30 minutes. Please indicate your preference by ticking one of boxes below:
I am happy to be interviewed I do not wish to be interviewed
If you would like to be interviewed, please supply your name and contact number.
Name Phone Number
Thank you for taking the time to complete our questionnaire.
Completely disagree
Completely agree
Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 2653887.2130
Appendix 2: Patient interview scheduleIntroduce yourself and ask if now is a good time to carry out the interview. Let them know again that it may take up 30 minutes. Remind them that the interview is being recorded but will only be used for research purposes. What they say will be treated in the strictest of confidence and they won’t be able to be identified from their comments. Are they okay with this? Remind them that they should only answer the questions which you ask them, to make sure it goes to time.
Explain the purpose of this line of questioning is for us to gain a full understanding of how they found the pack and whether it was of any benefit to them.
1. SatisfactionWhat was your experience of using the pads (if you did use them)?- Try to understand if too many included/not enough?- Was the absorbency level enough/too much? What were the most positive aspects of the pack in your opinion? What were the negative aspects of the pack in your opinion? What would you change about the pack and why?How did you feel about the pack being handed out by a health professional?- Try to get an understanding of whether this is a suitable method of delivery?- Try to understand if they were happy with how the pack was explained to them?- Try to understand if the pack was given at the right time (earlier/later?)
2. AwarenessHas the pack affected your awareness of the side-effect of surgery? How?Has the pack affected your awareness of PCUK? How?- Try to understand what aspects of PCUK awareness have been gained because of the pack.
3. FutureWhat would you say has changed for you since using the pack and why?- Explore their potential future habits (will they buy pads because of the pack etc.)?How would they be likely to use PCUK in the future and why?- Explore whether they know of any of our services that they might engage with and why these
might be beneficial to them?
4. Design and functionWas the bag and content suitable, practical and appropriately designed?If not what would you change and why?
Probes•Give me a specific example of that please…•Do you personally feel that way?• Is that something you have experienced?•Tell me more about…•Expand your answer on…•Can you explain your answer?
Wrap up question• Is there anything else you would like to say about the pack?
Appendix 3: HCP interview scheduleIntroduce yourself and ask if now is a good time to carry out the interview. Let them know again that it may take up 30 minutes. Remind them that the interview is being recorded but will only be used for research purposes. What they say will be treated in the strictest of confidence and they won’t be able to be identified from their comments. Are they okay with this? Remind them that they should only answer the questions which you ask them, to make sure it goes to time.
1. Can you tell me about what you usually offer to men before their surgery?Here we’re trying to understand what they did before they provided the packIs information provided? Who/where does this come from?
2. Can you tell me about the suitability of the pack contents?Here we’re trying to understand if any products or information should be added/refined to improve the packInformation provided?Products, such as pads etc?What would you change and why?
3. Were you always able to hand the pack out during the consultation?Here we want to try to understand if they felt the pack was an additional thing to remember and if they felt it was given to men at the ‘right’ timeIf not, what was the reason?Do you feel the pack was always given to men at the right time?If not when is the ‘right’ time?
4. In what ways do you feel that providing the pack enhanced or hindered the consultation?Here we’re trying to understand the impact of the pack on their workWas the pack something else that you felt you had to remember?Did the pack make you job easier? If so how and why?
5. Can you please give me your thoughts on the overall design of the pack?Was the pack and bag suitable, practical, discreet?Would you change anything about how the pack was designed, if so what and why?
6. Has the pilot affected your awareness of PCUK? How?Try to understand what aspects of PCUK awareness have been gained because of the pilot.
Probes•Give me a specific example of that please…•Do you personally feel that way?• Is that something you have experienced?•Tell me more about…•Expand your answer on…•Can you explain your answer?
Prostate Cancer UK is a registered charity in England and Wales (1005541) and in Scotland (SC039332). Registered company number 2653887. 2130
ThehelplineisopenMon-Fri9am-5pm,plusWed7pm-9pm* Calls are recorded for training purposes only. Confidentiality is maintained between callers and Prostate Cancer UK.
Speak to our Specialist Nurses0800 074 8383*prostatecanceruk.org