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Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck
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ScienceDirect British Journal of Oral and Maxillofacial Surgery xxx (2016) xxx–xxx
Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck夽 S.N. Rogers a,b,∗ , L. Russell b , D. Lowe a,b a b
Evidence-Based Practice Research Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, L39 4QP Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, L9 1AE, UK
Accepted 9 August 2016
Abstract A temporary tracheostomy is commonly done in patients who have reconstruction after the ablation of advanced oral cancer to provide easy access to a secure airway in case a haematoma forms or the patient needs a return to theatre. Although relatively simple to do, we know little about the patients’ experience, and to find out, we designed a three-stage study. First, we conducted semi-structured interviews to identify items related to the functional, emotional, and social impacts of the tracheostomy, on the ward and on removal (n = 15 patients). Secondly, we used these items to develop a short, one-page questionnaire in collaboration with the Patient and Carer Support Group and Research Forum, and thirdly, we did a cross-sectional postal survey of 125 patients who had had a temporary tracheostomy as part of free tissue reconstruction between January 2013 and July 2015. Of them, 86 responded (69% response rate). Generally patients reported a negative experience. In the cross-sectional survey most responders (n = 52, 60%) stated that they would “very much” avoid a tracheostomy if at all possible. The main problems concerned fear and communication, and between one-third and one-half stated that they had had “very much” or “quite a bit” of a problem in regard to choking, discomfort, attracting attention, sleeping, and general management (other than the suctioning). This feedback should form part of the information that is given to patients; it should also enable us to reflect on optimal perioperative care, and help to inform the debate about the selection criteria. © 2016 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved. Keywords: Tracheostomy; Head and neck cancer; Reconstruction; Patient experience
Introduction
夽 This clinical outcomes study was part funded by the Head and Neck Cancer (HaNC) Patient and Carer Research Forum based at Aintree University Hospital. The paper has not been submitted to another journal or presented at any meeting. The study approved by the Clinical Audit Department at Aintree University Hospital. There is no conflict of interest. ∗ Corresponding author. E-mail addresses: [email protected] (S.N. Rogers), [email protected] (L. Russell), [email protected] (D. Lowe).
In the UK, the early postoperative management of free flaps in the head and neck varies. In a national postal survey sent to maxillofacial surgical units in the UK, 69% of units (39/57) electively did a tracheostomy “usually” or “almost always” after free-flap reconstruction in the head and neck.1 After operation, the relatively low rate of complications with tracheostomy2,3 is balanced against the risk of potentially life-threatening acute compromise of the airway and the difficulties of emergency intubation.4 The morbidity associated with a temporary tracheostomy is well recognised and
http://dx.doi.org/10.1016/j.bjoms.2016.08.006 0266-4356/© 2016 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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includes chest infection, haemorrhage, displacement of the tube, removal and a longer stay in hospital, and tracheal stenosis. Some units avoid temporary tracheostomy5,6 and, depending on the patient, extubate immediately postoperatively or intubate overnight.7 There is debate as to whether these patients are best managed on a high dependency ward or intensive care unit.8 We routinely do temporary tracheostomies in most patients who have free tissue reconstruction after resection of oral and oropharyngeal cancer, and the Björk flap technique is standard practice, as it can be safely used in adults.9 Although considered a comparatively simple procedure, the Patient and Carer Support Group at Aintree University Hospital expressed concerns that some patients find the experience very distressing, and pointed out that members of the clinical team sometimes do not fully appreciate this. Astrachan et al10 reported the views of 60 nurses in critical care who thought that tracheostomy had considerably more practical and psychological benefits than prolonged endotracheal intubation, but to our knowledge, there is a lack of patientreported outcomes. As we were unable to find any report concerning what adult patients think about a temporary tracheostomy, we aimed to identify the concerns of our patients to gain a better understanding of how they feel, and to improve the quality of care and their experience.
Patients, material, and methods The study comprised three stages: the generation of content, design of a questionnaire, and a survey of patients. Stage one involved a structured interview of patients who had had a temporary tracheostomy at the maxillofacial unit at Aintree Hospital. They were asked to describe their early experiences (first 24 hours) of the tracheostomy on the ward and on removal in terms of its functional, emotional, and social impacts. A total of 22 patients were approached and 15 were interviewed by a trials nurse between mid-August and mid-December 2014. For the second stage we designed a short, one-page questionnaire based on the feedback from stage one, which used a Likert-type four-response option scale (not at all, a little, quite a bit, very much) for each question. We refined our initial draft (which we had done in conjunction with the trials nurse and head and neck clinical nurse specialists) through discussion with the Patient and Carer Support Group, mainly to structure the wording to make it suitable for a postal survey. We then did a small pilot on six inpatients. No changes were required. The third stage, a postal survey, was sent out in July 2015. We identified patients who had had free flap reconstruction in the maxillofacial unit between January 2013 and July 2015 from the hospital’s theatre database, and used the patient records system to collect clinical details. We then sent a questionnaire to those who were alive, and sent a reminder after
four weeks. Inpatients at the time the survey was conducted were also included. Most of the data are descriptive. Fisher’s exact test was used to compare differences between clinical factors (sex, age at tracheostomy, type of flap, time from tracheostomy to survey, and number of days tracheostomy in place). The study was approved by the Clinical Audit Department at Aintree University Hospital. Results The 15 stage-one interviews generated a wealth of qualitative data, and the summary extracts in Table 1 show the breadth of content and depth of feeling conveyed. The key general observation was fear; specifically, a fear of choking. Nursing care was generally regarded as good but the explanation about the tracheostomy before the procedure was not good enough. The tracheostomy made patients feel disempowered and isolated, and they had problems with communication. We used this information to develop the one-page questionnaire. A total of 181 patients had had reconstruction with a free flap in the maxillofacial unit between January 2013 and July 2015. Of them, 37 were thought to have died by July 2015, five were receiving palliative care, or had recurrence of their primary tumour, or were having other active treatment; six had taken part in the pilot study, and eight were lost to followup. The survey population therefore comprised 125 patients and the survey response was 69% (86/125). This did not vary noticeably by sex (men: 51/73, 70%; women: 35/52, 67%), type of flap (soft: 54/80, 68%; composite: 32/45, 71%) or time between tracheostomy and survey (less than 12 months: 38/57, 67%; 12-23 months: 34/45, 76%; 24 months and over: 14/23, 61%), but was lower for younger patients (under 55 years: 22/40, 55%; 55-64 years: 25/37, 68%; 65 years and over: 39/48, 81%, p = 0.03). Of the 86 responders, 51 (59%) were men and 35 (41%) women, median (IQR) age 62 (5571) years. A total of 54 (63%) had had a soft free flap (40 radial, 11 anterolateral thigh, 2 latissimus dorsi, 1 rectus abdominus) and 32 (37%) a composite free flap (12 fibular, 11 deep circumflex iliac artery (DCIA), 6 scapular, 3 composite radial). The median (IQR) time from tracheostomy to survey response was 14 (7-22) months. Table 2 summerises the overall response to the questionnaire. Most (60%) responders stated that they would “very much” avoid a tracheostomy if at all possible; 59% stated that speech was “very much” a problem, and 44% that communication was very difficult with their tracheostomy in place. Between one-third and one-half chose “very much” or “quite a bit” in regard to choking, discomfort, attracting attention, sleeping, and general management (other than the suctioning). Likewise, between one-third and one-half chose “not at all” or “a little” for feeling safe, having sufficient information about the tracheostomy before the operation, and being given enough help to manage it afterwards. One in seven (14%) were “quite” or “very” reluctant to have it removed.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Table 1 A selection of comments from 15 patients who were interviewed about their experiences with a temporary tracheostomy. Patient
Comment
1 2
I found I was always in fear of choking and so found sleep very hard and uncomfortable. Main problems were with the physical issues, specifically uncomfortable, but I knew it was necessary. Removal of the tracheostomy tube was easy and a relief. Frightening, terrifying, very stressful, caused quite a lot of pain, tried to remove it but had to leave it, was on oxygen overnight, not being able to breathe, sucking out debris bothered me, still very sore, wanted to ask but was frightened. I know what I was getting myself into but when I woke it was like leading into a black tunnel and then horrific pain to which very much to my surprise someone was there to relieve it. I thought that hygiene was first and foremost and also I was still in agony when awake. I had major surgery twice. This has left me with facial and neck scars plus a large and very deep tracheostomy scar. As a young person this has been and still is very hard to live with, People look and make comments. Once I woke with the tracheostomy tube I was worried it would block. It is only now that the scars are so awful and what the public do and say that bother me. Waking up with one fitted was a terrifying experience, the noise, and the feeling of not being able to get my breath is something I still don’t like thinking about. Whilst I was told before the operation I would have one fitted, I was not prepared for the reality of it. Did not understand what was happening. I didn’t cope well with it at all whilst I was on the ward. I was aware I was going to regain consciousness with a tracheostomy but was not greatly worried about it. My major concern was the surgery on my tongue which was the focus of cure. The reality was that the tracheostomy was the worst thing of all of the invasive procedures carried out on me. On waking there was mild coughing and eventually this stopped and I learnt to breathe from the top of my lungs by inter-costal movements rather than diaphragmatic breathing. I was consciously aware of dirty, cold dry air entering my lungs. Healing was very slow taking six weeks to heal with dressing changes during the day which I was able to do, this impaired my speech as I had to learn to structure sentences, change breathing patterns and spoke much like a darlek. As the tracheostomy closed I then had to relearn sentence structure, word flow and emphasis and still tripped myself up with speech. Immediately coming around from operation quite relaxed due to drugs. Later on the mucus building up on the chest, couldn’t breathe, felt like drowning, induced panic. Lying down immobilised does not help this, very drowsy initially now social problems. On the ward there was a sense of drowning and panicking, feeling continued throughout time of having the tracheostomy in. The most distressing part of the whole operation was the tracheostomy, horrible sensation that seemed to add to the trauma of the whole experience. I had my tube in for four to five days. I had prepared myself with pen and paper to communicate. I was OK with it emotionally but my friends were very shocked and upset as they were not prepared for the visual reality by the ward staff. I was frustrated not being able to speak until the tube was changed to a variety where speech was possible. I was nervous about catching it on something and the thing coming out with my movements so they were very tentative. Information about how it might feel immediately post op and a more accurate expectation about the length of time would have helped. Perhaps viewing some photographs pre-op and explaining about the different types of tubes and how they affect speech would help. Waking with the tracheostomy I was surprised and it hit me emotionally as I don’t think I was told previously. I couldn’t speak, I found it difficult attracting attention. Much later shown how to use it, felt easier and more in control. After struggling for some time with communication with a pen and pad, told to stop the opening to be able to speak. My five year old daughter didn’t recognise me until I was able to speak. Removing the tracheostomy was a very happy day. The most difficult was the feeling of choking, the inability to get urgent attention to suck clean the tube, otherwise the communications issues were secondary. Horrendous. I used to be a nurse with children and you don’t realise what it is like. I would sooner be dead than go through it again. It is a horrible, fearful, horrendous feeling especially when coughing and sucking down the tracheostomy. It was difficult to get a comfortable position getting the oxygen, alright when removed, over quite quickly. You don’t know what it is like unless you have had it done. The feeling of sucking out was awful. It felt funny and strange, so so scary. I knew it was going to be there, if I hadn’t known it may have been very different and even more frightening. Because I knew it was going to be there it was not so frightening. It was impossible to speak and had to write everything down. I felt very lonely, felt left out because I could not form a conversation. When you are a patient you chat to one another. Once removed I didn’t stop talking. It has healed healthily and feels alright. The enormous vulnerability especially when the nursing staff were making decisions for me and I couldn’t control them, eg asking questions I couldn’t answer, choice, not understanding. I need to communicate by writing at least. Powerless not able to negotiate. Inability to be understood. Not being able to communicate. Impacted on me socially, can’t interact the same, tracheostomy in four days, beforehand you didn’t realise how emotional it was. The big thing was when I woke up. They tell you about it but not how bad it is. They say that you get used to it but I don’t think you do. The thought of having another one I would sooner go. I wouldn’t do it again, not sure what the alternative would be apart from death. My only response “horrible”.
3 4 5
6
7
8
9
10
11
12
13
14
15
A total of 41/78 (53%) patients had a tracheostomy in place for less than seven days, 37/78 (47%) for seven or more days, and eight did not know. Table 3 shows the two worst experiences of a tracheostomy by clinical factors. Women tended to report a worse experience, as did those under 65 years of age and those who had had a tracheostomy for less than seven days. Women tended to be older (60% were 65 years or over, compared with 35%
of men) but there was little difference between sexes (45% were women and 49% men) or in the age of those who had had the tracheostomy in place for less than seven days (50% were under 65 years and 44% 65 years and over). An open-ended, free-text question at the end of the questionnaire asked patients for additional information. Table 4 shows a selection of the 26 responses.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Table 2 Overall response of 86 patients to survey about the experience of a tracheostomy.
1. Did you get sufficient information about the trachy prior to your operation? 9. Did you feel safe while the trachy was in? 15. Did you get enough help about managing the trachy after your operation? 2. Did you have difficulty breathing while the trachy was in place? 3. Did you find yourself choking or have the feeling of choking? 4. Did you experience the feeling of suffocation? 5. Did you experience any discomfort with the trachy? 6. Was communication with others difficult while the trachy was in? 7. Did you find it difficult to attract attention? 8. Was it a problem being around your family/carers? 10. Was sleeping difficult while the trachy was in place? 11. Was social isolation a problem with the trachy? 12. Was speech a problem with the trachy? 13. Would you avoid a trachy if at all possible? 14. Was managing the trachy difficult (as opposed to just the suctioning bit)? 16. Was your mobility restricted specifically because of the trachy? 17. Were you reluctant to get the trachy removed? ∗
Not at all
A little
Quite a bit
Very much
Missing
Not at all/a little* (%)
Not at all* (%)
Quite a bit/very much* (%)
Very much* (%)
10
27
29
20
-
43
12
-
-
9
26
18
31
2
42
11
-
-
10
19
33
21
3
35
12
-
-
33
38
6
9
-
-
-
17
10
33
24
15
13
1
-
-
33
15
52
18
11
4
1
-
-
18
5
15
41
17
13
-
-
-
35
15
6
26
16
37
1
-
-
62
44
29
24
16
16
1
-
-
38
19
40
30
8
6
2
-
-
17
7
21
29
16
19
1
-
-
41
22
34
24
10
15
3
-
-
30
18
3
12
20
50
1
-
-
82
59
16
7
10
49
4
-
-
72
60
17
37
19
11
2
-
-
36
13
45
21
7
11
2
-
-
21
13
68
4
3
9
2
-
-
14
11
Excludes missing data.
Discussion The purpose of this project was to find out what patients thought about having a temporary tracheostomy. To our knowledge this has not previously been reported. We knew of no validated questionnaire, so our first step was to design a suitable measure that addressed the functional, emotional, and social impacts of a temporary tracheostomy and its removal. Although we used open interviews with patients to generate items for inclusion and the Support Group assisted with the final questionnaire, we accept that it was developed specifically for the study, and would benefit from further validation if it was to be used more widely. It was designed to be brief as we intended always to use it in a postal survey. It has not been used in conjunction with other health-related quality of life questionnaires, as the focus was on the patients’ experiences. The postal survey had a reasonable sample size
and the response rate of 69% was high enough to enable us to draw tentative conclusions. Although the first stage involved only 15 patients, the uniformity of the negative impact of a tracheostomy was obvious, and this was supported subsequently by the survey, which found that 72% would avoid a tracheostomy “quite a bit” or “very much” if at all possible. The survey showed that communication was a serious problem and this seemed to lead to feelings of fear and vulnerability. There were some differences between the sexes, and women were more likely, for example, to report not feeling safe while the tracheostomy was in place. It would be reasonable to think that the shorter the time it was in, the better, but even when this was for less than seven days, there were serious problems with discomfort, coping with visitors, sleeping, and managing it. This study raises several issues. Patients have asked for more information before they have a tracheostomy, and would
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Table 3 Response to survey about experience of a tracheostomy by sex, age, type of free flap, and time from tracheostomy. Data are percentage of column totals, excluding missing responses. Sex
2. Did you have difficulty breathing while the trachy was in place? 3. Did you find yourself choking or have the feeling of choking? 4. Did you experience the feeling of suffocation? 5. Did you experience any discomfort with the trachy? 6. Was communication with others difficult while the trachy was in? 7. Did you find it difficult to attract attention? 8. Was it a problem being around your family/carers? 10. Was sleeping difficult while the trachy was in place? 11. Was social isolation a problem with the trachy? 12. Was speech a problem with the trachy? 13. Would you avoid a trachy if at all possible? 14. Was managing the trachy difficult (as opposed to just the suctioning bit)? 16. Was your mobility restricted specifically because of the trachy? 17. Were you reluctant to get the trachy removed? ∗ ∗∗
Type of flap
Time from tracheostomy to survey (months)
Number of days tracheostomy in place
<65 (n = 47)
≥65 (n = 39)
Soft (n = 54)
Composite (n = 32)
<12 (n = 38)
≥12 (n = 48)
<7 (n = 41)
≥7 (n = 37)
Not at all/a little 39 49
45
41
39
50
32
52
46
43
31*
57*
38
46
42
42
37
46
54
35
32
39
40
29
36
33
26
42
32
41
8*
11
28
21
15
24
11
Male (n = 51) 1. Did you get sufficient information about the trachy prior to your operation? 9. Did you feel safe while the trachy was in? 15. Did you get enough help about managing the trachy after your operation?
Age at tracheostomy (years) Female (n = 35)
Quite a bit/very much 16 20 26*
25
44
43*
21*
34
31
39
28
39
28
12
26
22
13
11
28
22
15
22
14
29
43
40
28
28
48
39
31
51**
19**
56
71
65
59
69
52
53
70
63
65
32
46
37
38
28*
54*
29
45
33
41
12
23
13
21
17
16
11
21
23*
5*
38
46
48
33
44
35
45
38
58*
32*
22
41
28
32
25
39
21
38
26
32
76
91
78
87
85
77
76
87
85
86
69
76
76
67
69
77
72
72
81
65
34
38
37
34
33
40
32
38
50*
22*
18
26
26
16
20
23
24
20
26
19
14
14
18
10
11
20
22
9
10
14
0.01 < p < 0.05. p < 0.01.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Table 4 A selection of free-text responses about the impact of tracheostomy. 1 st time scared when suctioning (fear of unknown) next couple got easier. Blocked once but was attended to very quickly. It was a very unpleasant feeling. Can’t remember how many days trachy was in, I am guessing 3 weeks. Apparently I ripped mine out after operation. I don’t really think it was that bad after I was in main ward. Changing it was horrific. I was petrified, felt I could not breathe. Taking it out was easier than I expected and was quick. Despite the discomfort mainly due to very tight stitches, I realised the procedure was inherent in my recovery so tried to work with it. Once tapes had replaced the sutures it was completely comfortable apart from when I had to use the suction pipe. Healing was prompt apart from site of stitches which cause sores on the thin skinned area on my collar bone, and these were worsened during radiotherapy. Overall I think that had the trachy not been so tightly secured the whole episode would have been made more comfortable. I did not actually have to manage the trachy myself apart from not getting it wet. I had worries about my own suctioning while in hospital. I would have felt better as the worse feeling was choking and panic! Felt awful if had to call for nurses to do the suction more than once a night. Healing took much longer than I anticipated. Good care was given by the community nurse in dressings. I believe I pulled the tracheostomy out and didn’t need it again! I found the frame very tight and the removal of the frame was very painful and would benefit from some kind of pain relief. I had a horrific experience one night, when my trachy got blocked up and I could not breath, I had to throw a bottle at the door to get attention from someone to help me! I have had the trachy twice now on 2 major operations. I have to say it was the worst part and it frightened the life out of me. Suction blocking is the worst part. Also the built in heater was so uncomfortable. I think this survey is such a good idea. Thank you for doing this. I only had a trachy in place for a few hours as I vomited and it dislodged and had it removed whilst in ITU. I was not aware of some of the side effects which resulted from having a tracheostomy, therefore I did not cope too well. Suctioning and lack of speech were not explained to me. However I coped and soon learned the hard way, by experiencing these problems. It has been 22 months since this procedure but can honestly say I had no fear or side or ill effects. It is a necessary evil, you have to endure to get to a better place but boy it feels so good when it is taken out, the feeling of complete euphoria. Less than was expected. People that have had a trachy previously say to me that I can’t believe I have had one - hardly any scar mark. I did not enjoy the experience. Nursing staff need to be more aware of the psychological impact that inability to communicate can have on a patient. On leaving hospital nurses had difficulty dressing the wound mainly due to not having correct dressing or expertise. It was very noisy which made sleep difficult. I was very apprehensive when time came to remove trachy. There was social isolation because of unable to speak. The discomfort was due to lot of mucus production, the yanker sucker was my best friend. The trachy is not a pleasant experience and knowledge of how it will be will not make it any easier for me - my apprehension will still run riot. The first time I had the trachy removed it was stuck and the doctor who removed it was very forceful removing it - maybe could have used a lubricant to make it easier to remove. It was a very frightening experience. There were 2 things that I found particularly distressing - not being able to communicate with healthcare professionals particularly in the first days after the operation. I felt incredibly vulnerable and frightened. I could not communicate my concerns. Secondly the tube getting blocked with secretions. It was a miserable experience especially at night time. When I tried to alert night staff on three occasions I was told that there was nothing wrong with me, when I believed I was choking to death. They would not allow me to write my concerns so that I could write my concerns. I eventually asked a nurse to show me how to use the suction pipe so I could relieve the problem myself. I had nightmares for months afterwards. There were times when I needed suction, then it was difficult and frightening and I felt I could not breathe. They took tracheostomy out after 5 days but oxygen levels were down and they tried to put it back in twice but could not. Not very pleasant. I was on oxygen for a day and left 2 days later. All goes well. Trachy scar could have been neater. Was glad to have it removed to speak. When the device was removed, the scar did not heal well, I had to have the wound cauterised.
like more discussion about what to expect, as well as an information leaflet. They thought that it would be helpful to have a manikin with a tracheostomy tube in the pretreatment, multiprofessional assessment clinic, and they thought that preoperative instruction about how to manage it would help them to look after themselves better. They found communication difficult with the tracheostomy in place so additional resources such as LCD eWriters (Boogie BoardTM , Improv Electronics, Kent Displays Inc, Ohio, USA) and other devices would be helpful. Patients felt quite vulnerable and asked for a designated tracheostomy nurse to be appointed to the ward, and for all ward staff to be trained to help with tracheostomies. They also asked to have tracheostomies removed as soon as possible. The poor experience of the patients supports the stratification of risk, which could be done if individual patients were selected, and factors such as site and extent of resection, coexisting conditions, and grade of intubation, were taken into
account. Scoring systems are currently being devised to help in the selection of patients,11,12 and it will be interesting to compare the experiences of those who have, and do not have, a tracheostomy. In conclusion, we have to balance the poor experience of patients against the risk of life-threatening compromise of the airway. Our findings support the need to treat patients as individuals and to target the use of tracheostomy. Not all patients who have free flap reconstruction will require it, and further research is needed on those who do. Certainly from a patient’s perspective, a temporary tracheostomy is not considered a “minor” and routine procedure.
Conflict of Interest We have no conflicts of interest.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Ethics statement/confirmation of patient’s permission The data, which had been collected as part of a service audit rather than for research, met the criteria of the local Clinical Governance Department for service evaluation. The patients’ permission has been obtained. Acknowledgements We would like to that the Head and Neck Cancer Patient and Carer Research Forum based at the Regional Surgical Centre, for initiating this area of investigation and providing financial support. Also the Aintree Research and Development Department for providing trails nurse time. References 1. Marsh M, Elliott S, Anand R, et al. Early postoperative care for free flap head & neck reconstructive surgery - a national survey of practice. Br J Oral Maxillofac Surg 2009;47:182–5. 2. Castling B, Telfer M, Avery BS. Complications of tracheostomy in major head and neck cancer surgery: a retrospective study of 60 consecutive cases. Br J Oral Maxillofac Surg 1994;32:3–5. 3. Halfpenny W, McGurk M. Analysis of tracheostomy-associated morbidity after operations for head and neck cancer. Br J Oral Maxillofac Surg 2000;38:509–12.
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4. Mishra S, Bhatnagar S, Jha RR, et al. Airway management of patients undergoing oral cancer surgery: a retrospective study. Eur J Anaesthesiol 2005;22:510–4. 5. Crosher R, Baldie C, Mitchell R. Selective use of tracheostomy in surgery for head and neck cancer: an audit. Br J Oral Maxillofac Surg 1997;35:43–5. 6. Coyle MJ, Shrimpton A, Perkins C, et al. First do no harm: should routine tracheostomy after oral and maxillofacial oncological operations be abandoned? Br J Oral Maxillofac Surg 2012;50:732–5. 7. Coyle MJ, Tyrrell R, Godden A, et al. Replacing tracheostomy with overnight intubation to manage the airway in head and neck oncology patients: towards an improved recovery. Br J Oral Maxillofac Surg 2013;51:493–6. 8. Mathew SA, Senthilnathan P, Narayanan V. Management of postoperative maxillofacial oncology patients without the routine use of an intensive care unit. J Maxillofac Oral Surg 2010;9:329–33. 9. Malata CM, Foo IT, Simpson KH, et al. An audit of Björk flap tracheostomies in head and neck plastic surgery. Br J Oral Maxillofac Surg 1996;34:42–6. 10. Astrachan DI, Kirchner JC, Goodwin Jr WJ. Prolonged intubation vs. tracheotomy: complications, practical and psychological considerations. Laryngoscope 1988;98:1165–9. 11. Cameron M, Corner A, Diba A, et al. Development of a tracheostomy scoring system to guide airway management after major head and neck surgery. Int J Oral Maxillofac Surg 2009;38:846–9. 12. Lee HJ, Kim JW, Choi SY, et al. The evaluation of a scoring system in airway management after oral cancer surgery. Maxillofac Plast Reconstr Surg 2015;37:19.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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ScienceDirect British Journal of Oral and Maxillofacial Surgery xxx (2016) xxx–xxx
Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck夽 S.N. Rogers a,b,∗ , L. Russell b , D. Lowe a,b a b
Evidence-Based Practice Research Centre (EPRC), Faculty of Health and Social Care, Edge Hill University, St Helens Road, Ormskirk, L39 4QP Regional Maxillofacial Unit, University Hospital Aintree, Liverpool, L9 1AE, UK
Accepted 9 August 2016
Abstract A temporary tracheostomy is commonly done in patients who have reconstruction after the ablation of advanced oral cancer to provide easy access to a secure airway in case a haematoma forms or the patient needs a return to theatre. Although relatively simple to do, we know little about the patients’ experience, and to find out, we designed a three-stage study. First, we conducted semi-structured interviews to identify items related to the functional, emotional, and social impacts of the tracheostomy, on the ward and on removal (n = 15 patients). Secondly, we used these items to develop a short, one-page questionnaire in collaboration with the Patient and Carer Support Group and Research Forum, and thirdly, we did a cross-sectional postal survey of 125 patients who had had a temporary tracheostomy as part of free tissue reconstruction between January 2013 and July 2015. Of them, 86 responded (69% response rate). Generally patients reported a negative experience. In the cross-sectional survey most responders (n = 52, 60%) stated that they would “very much” avoid a tracheostomy if at all possible. The main problems concerned fear and communication, and between one-third and one-half stated that they had had “very much” or “quite a bit” of a problem in regard to choking, discomfort, attracting attention, sleeping, and general management (other than the suctioning). This feedback should form part of the information that is given to patients; it should also enable us to reflect on optimal perioperative care, and help to inform the debate about the selection criteria. © 2016 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved. Keywords: Tracheostomy; Head and neck cancer; Reconstruction; Patient experience
Introduction
夽 This clinical outcomes study was part funded by the Head and Neck Cancer (HaNC) Patient and Carer Research Forum based at Aintree University Hospital. The paper has not been submitted to another journal or presented at any meeting. The study approved by the Clinical Audit Department at Aintree University Hospital. There is no conflict of interest. ∗ Corresponding author. E-mail addresses: [email protected] (S.N. Rogers), [email protected] (L. Russell), [email protected] (D. Lowe).
In the UK, the early postoperative management of free flaps in the head and neck varies. In a national postal survey sent to maxillofacial surgical units in the UK, 69% of units (39/57) electively did a tracheostomy “usually” or “almost always” after free-flap reconstruction in the head and neck.1 After operation, the relatively low rate of complications with tracheostomy2,3 is balanced against the risk of potentially life-threatening acute compromise of the airway and the difficulties of emergency intubation.4 The morbidity associated with a temporary tracheostomy is well recognised and
http://dx.doi.org/10.1016/j.bjoms.2016.08.006 0266-4356/© 2016 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved.
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includes chest infection, haemorrhage, displacement of the tube, removal and a longer stay in hospital, and tracheal stenosis. Some units avoid temporary tracheostomy5,6 and, depending on the patient, extubate immediately postoperatively or intubate overnight.7 There is debate as to whether these patients are best managed on a high dependency ward or intensive care unit.8 We routinely do temporary tracheostomies in most patients who have free tissue reconstruction after resection of oral and oropharyngeal cancer, and the Björk flap technique is standard practice, as it can be safely used in adults.9 Although considered a comparatively simple procedure, the Patient and Carer Support Group at Aintree University Hospital expressed concerns that some patients find the experience very distressing, and pointed out that members of the clinical team sometimes do not fully appreciate this. Astrachan et al10 reported the views of 60 nurses in critical care who thought that tracheostomy had considerably more practical and psychological benefits than prolonged endotracheal intubation, but to our knowledge, there is a lack of patientreported outcomes. As we were unable to find any report concerning what adult patients think about a temporary tracheostomy, we aimed to identify the concerns of our patients to gain a better understanding of how they feel, and to improve the quality of care and their experience.
Patients, material, and methods The study comprised three stages: the generation of content, design of a questionnaire, and a survey of patients. Stage one involved a structured interview of patients who had had a temporary tracheostomy at the maxillofacial unit at Aintree Hospital. They were asked to describe their early experiences (first 24 hours) of the tracheostomy on the ward and on removal in terms of its functional, emotional, and social impacts. A total of 22 patients were approached and 15 were interviewed by a trials nurse between mid-August and mid-December 2014. For the second stage we designed a short, one-page questionnaire based on the feedback from stage one, which used a Likert-type four-response option scale (not at all, a little, quite a bit, very much) for each question. We refined our initial draft (which we had done in conjunction with the trials nurse and head and neck clinical nurse specialists) through discussion with the Patient and Carer Support Group, mainly to structure the wording to make it suitable for a postal survey. We then did a small pilot on six inpatients. No changes were required. The third stage, a postal survey, was sent out in July 2015. We identified patients who had had free flap reconstruction in the maxillofacial unit between January 2013 and July 2015 from the hospital’s theatre database, and used the patient records system to collect clinical details. We then sent a questionnaire to those who were alive, and sent a reminder after
four weeks. Inpatients at the time the survey was conducted were also included. Most of the data are descriptive. Fisher’s exact test was used to compare differences between clinical factors (sex, age at tracheostomy, type of flap, time from tracheostomy to survey, and number of days tracheostomy in place). The study was approved by the Clinical Audit Department at Aintree University Hospital. Results The 15 stage-one interviews generated a wealth of qualitative data, and the summary extracts in Table 1 show the breadth of content and depth of feeling conveyed. The key general observation was fear; specifically, a fear of choking. Nursing care was generally regarded as good but the explanation about the tracheostomy before the procedure was not good enough. The tracheostomy made patients feel disempowered and isolated, and they had problems with communication. We used this information to develop the one-page questionnaire. A total of 181 patients had had reconstruction with a free flap in the maxillofacial unit between January 2013 and July 2015. Of them, 37 were thought to have died by July 2015, five were receiving palliative care, or had recurrence of their primary tumour, or were having other active treatment; six had taken part in the pilot study, and eight were lost to followup. The survey population therefore comprised 125 patients and the survey response was 69% (86/125). This did not vary noticeably by sex (men: 51/73, 70%; women: 35/52, 67%), type of flap (soft: 54/80, 68%; composite: 32/45, 71%) or time between tracheostomy and survey (less than 12 months: 38/57, 67%; 12-23 months: 34/45, 76%; 24 months and over: 14/23, 61%), but was lower for younger patients (under 55 years: 22/40, 55%; 55-64 years: 25/37, 68%; 65 years and over: 39/48, 81%, p = 0.03). Of the 86 responders, 51 (59%) were men and 35 (41%) women, median (IQR) age 62 (5571) years. A total of 54 (63%) had had a soft free flap (40 radial, 11 anterolateral thigh, 2 latissimus dorsi, 1 rectus abdominus) and 32 (37%) a composite free flap (12 fibular, 11 deep circumflex iliac artery (DCIA), 6 scapular, 3 composite radial). The median (IQR) time from tracheostomy to survey response was 14 (7-22) months. Table 2 summerises the overall response to the questionnaire. Most (60%) responders stated that they would “very much” avoid a tracheostomy if at all possible; 59% stated that speech was “very much” a problem, and 44% that communication was very difficult with their tracheostomy in place. Between one-third and one-half chose “very much” or “quite a bit” in regard to choking, discomfort, attracting attention, sleeping, and general management (other than the suctioning). Likewise, between one-third and one-half chose “not at all” or “a little” for feeling safe, having sufficient information about the tracheostomy before the operation, and being given enough help to manage it afterwards. One in seven (14%) were “quite” or “very” reluctant to have it removed.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Table 1 A selection of comments from 15 patients who were interviewed about their experiences with a temporary tracheostomy. Patient
Comment
1 2
I found I was always in fear of choking and so found sleep very hard and uncomfortable. Main problems were with the physical issues, specifically uncomfortable, but I knew it was necessary. Removal of the tracheostomy tube was easy and a relief. Frightening, terrifying, very stressful, caused quite a lot of pain, tried to remove it but had to leave it, was on oxygen overnight, not being able to breathe, sucking out debris bothered me, still very sore, wanted to ask but was frightened. I know what I was getting myself into but when I woke it was like leading into a black tunnel and then horrific pain to which very much to my surprise someone was there to relieve it. I thought that hygiene was first and foremost and also I was still in agony when awake. I had major surgery twice. This has left me with facial and neck scars plus a large and very deep tracheostomy scar. As a young person this has been and still is very hard to live with, People look and make comments. Once I woke with the tracheostomy tube I was worried it would block. It is only now that the scars are so awful and what the public do and say that bother me. Waking up with one fitted was a terrifying experience, the noise, and the feeling of not being able to get my breath is something I still don’t like thinking about. Whilst I was told before the operation I would have one fitted, I was not prepared for the reality of it. Did not understand what was happening. I didn’t cope well with it at all whilst I was on the ward. I was aware I was going to regain consciousness with a tracheostomy but was not greatly worried about it. My major concern was the surgery on my tongue which was the focus of cure. The reality was that the tracheostomy was the worst thing of all of the invasive procedures carried out on me. On waking there was mild coughing and eventually this stopped and I learnt to breathe from the top of my lungs by inter-costal movements rather than diaphragmatic breathing. I was consciously aware of dirty, cold dry air entering my lungs. Healing was very slow taking six weeks to heal with dressing changes during the day which I was able to do, this impaired my speech as I had to learn to structure sentences, change breathing patterns and spoke much like a darlek. As the tracheostomy closed I then had to relearn sentence structure, word flow and emphasis and still tripped myself up with speech. Immediately coming around from operation quite relaxed due to drugs. Later on the mucus building up on the chest, couldn’t breathe, felt like drowning, induced panic. Lying down immobilised does not help this, very drowsy initially now social problems. On the ward there was a sense of drowning and panicking, feeling continued throughout time of having the tracheostomy in. The most distressing part of the whole operation was the tracheostomy, horrible sensation that seemed to add to the trauma of the whole experience. I had my tube in for four to five days. I had prepared myself with pen and paper to communicate. I was OK with it emotionally but my friends were very shocked and upset as they were not prepared for the visual reality by the ward staff. I was frustrated not being able to speak until the tube was changed to a variety where speech was possible. I was nervous about catching it on something and the thing coming out with my movements so they were very tentative. Information about how it might feel immediately post op and a more accurate expectation about the length of time would have helped. Perhaps viewing some photographs pre-op and explaining about the different types of tubes and how they affect speech would help. Waking with the tracheostomy I was surprised and it hit me emotionally as I don’t think I was told previously. I couldn’t speak, I found it difficult attracting attention. Much later shown how to use it, felt easier and more in control. After struggling for some time with communication with a pen and pad, told to stop the opening to be able to speak. My five year old daughter didn’t recognise me until I was able to speak. Removing the tracheostomy was a very happy day. The most difficult was the feeling of choking, the inability to get urgent attention to suck clean the tube, otherwise the communications issues were secondary. Horrendous. I used to be a nurse with children and you don’t realise what it is like. I would sooner be dead than go through it again. It is a horrible, fearful, horrendous feeling especially when coughing and sucking down the tracheostomy. It was difficult to get a comfortable position getting the oxygen, alright when removed, over quite quickly. You don’t know what it is like unless you have had it done. The feeling of sucking out was awful. It felt funny and strange, so so scary. I knew it was going to be there, if I hadn’t known it may have been very different and even more frightening. Because I knew it was going to be there it was not so frightening. It was impossible to speak and had to write everything down. I felt very lonely, felt left out because I could not form a conversation. When you are a patient you chat to one another. Once removed I didn’t stop talking. It has healed healthily and feels alright. The enormous vulnerability especially when the nursing staff were making decisions for me and I couldn’t control them, eg asking questions I couldn’t answer, choice, not understanding. I need to communicate by writing at least. Powerless not able to negotiate. Inability to be understood. Not being able to communicate. Impacted on me socially, can’t interact the same, tracheostomy in four days, beforehand you didn’t realise how emotional it was. The big thing was when I woke up. They tell you about it but not how bad it is. They say that you get used to it but I don’t think you do. The thought of having another one I would sooner go. I wouldn’t do it again, not sure what the alternative would be apart from death. My only response “horrible”.
3 4 5
6
7
8
9
10
11
12
13
14
15
A total of 41/78 (53%) patients had a tracheostomy in place for less than seven days, 37/78 (47%) for seven or more days, and eight did not know. Table 3 shows the two worst experiences of a tracheostomy by clinical factors. Women tended to report a worse experience, as did those under 65 years of age and those who had had a tracheostomy for less than seven days. Women tended to be older (60% were 65 years or over, compared with 35%
of men) but there was little difference between sexes (45% were women and 49% men) or in the age of those who had had the tracheostomy in place for less than seven days (50% were under 65 years and 44% 65 years and over). An open-ended, free-text question at the end of the questionnaire asked patients for additional information. Table 4 shows a selection of the 26 responses.
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Table 2 Overall response of 86 patients to survey about the experience of a tracheostomy.
1. Did you get sufficient information about the trachy prior to your operation? 9. Did you feel safe while the trachy was in? 15. Did you get enough help about managing the trachy after your operation? 2. Did you have difficulty breathing while the trachy was in place? 3. Did you find yourself choking or have the feeling of choking? 4. Did you experience the feeling of suffocation? 5. Did you experience any discomfort with the trachy? 6. Was communication with others difficult while the trachy was in? 7. Did you find it difficult to attract attention? 8. Was it a problem being around your family/carers? 10. Was sleeping difficult while the trachy was in place? 11. Was social isolation a problem with the trachy? 12. Was speech a problem with the trachy? 13. Would you avoid a trachy if at all possible? 14. Was managing the trachy difficult (as opposed to just the suctioning bit)? 16. Was your mobility restricted specifically because of the trachy? 17. Were you reluctant to get the trachy removed? ∗
Not at all
A little
Quite a bit
Very much
Missing
Not at all/a little* (%)
Not at all* (%)
Quite a bit/very much* (%)
Very much* (%)
10
27
29
20
-
43
12
-
-
9
26
18
31
2
42
11
-
-
10
19
33
21
3
35
12
-
-
33
38
6
9
-
-
-
17
10
33
24
15
13
1
-
-
33
15
52
18
11
4
1
-
-
18
5
15
41
17
13
-
-
-
35
15
6
26
16
37
1
-
-
62
44
29
24
16
16
1
-
-
38
19
40
30
8
6
2
-
-
17
7
21
29
16
19
1
-
-
41
22
34
24
10
15
3
-
-
30
18
3
12
20
50
1
-
-
82
59
16
7
10
49
4
-
-
72
60
17
37
19
11
2
-
-
36
13
45
21
7
11
2
-
-
21
13
68
4
3
9
2
-
-
14
11
Excludes missing data.
Discussion The purpose of this project was to find out what patients thought about having a temporary tracheostomy. To our knowledge this has not previously been reported. We knew of no validated questionnaire, so our first step was to design a suitable measure that addressed the functional, emotional, and social impacts of a temporary tracheostomy and its removal. Although we used open interviews with patients to generate items for inclusion and the Support Group assisted with the final questionnaire, we accept that it was developed specifically for the study, and would benefit from further validation if it was to be used more widely. It was designed to be brief as we intended always to use it in a postal survey. It has not been used in conjunction with other health-related quality of life questionnaires, as the focus was on the patients’ experiences. The postal survey had a reasonable sample size
and the response rate of 69% was high enough to enable us to draw tentative conclusions. Although the first stage involved only 15 patients, the uniformity of the negative impact of a tracheostomy was obvious, and this was supported subsequently by the survey, which found that 72% would avoid a tracheostomy “quite a bit” or “very much” if at all possible. The survey showed that communication was a serious problem and this seemed to lead to feelings of fear and vulnerability. There were some differences between the sexes, and women were more likely, for example, to report not feeling safe while the tracheostomy was in place. It would be reasonable to think that the shorter the time it was in, the better, but even when this was for less than seven days, there were serious problems with discomfort, coping with visitors, sleeping, and managing it. This study raises several issues. Patients have asked for more information before they have a tracheostomy, and would
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Table 3 Response to survey about experience of a tracheostomy by sex, age, type of free flap, and time from tracheostomy. Data are percentage of column totals, excluding missing responses. Sex
2. Did you have difficulty breathing while the trachy was in place? 3. Did you find yourself choking or have the feeling of choking? 4. Did you experience the feeling of suffocation? 5. Did you experience any discomfort with the trachy? 6. Was communication with others difficult while the trachy was in? 7. Did you find it difficult to attract attention? 8. Was it a problem being around your family/carers? 10. Was sleeping difficult while the trachy was in place? 11. Was social isolation a problem with the trachy? 12. Was speech a problem with the trachy? 13. Would you avoid a trachy if at all possible? 14. Was managing the trachy difficult (as opposed to just the suctioning bit)? 16. Was your mobility restricted specifically because of the trachy? 17. Were you reluctant to get the trachy removed? ∗ ∗∗
Type of flap
Time from tracheostomy to survey (months)
Number of days tracheostomy in place
<65 (n = 47)
≥65 (n = 39)
Soft (n = 54)
Composite (n = 32)
<12 (n = 38)
≥12 (n = 48)
<7 (n = 41)
≥7 (n = 37)
Not at all/a little 39 49
45
41
39
50
32
52
46
43
31*
57*
38
46
42
42
37
46
54
35
32
39
40
29
36
33
26
42
32
41
8*
11
28
21
15
24
11
Male (n = 51) 1. Did you get sufficient information about the trachy prior to your operation? 9. Did you feel safe while the trachy was in? 15. Did you get enough help about managing the trachy after your operation?
Age at tracheostomy (years) Female (n = 35)
Quite a bit/very much 16 20 26*
25
44
43*
21*
34
31
39
28
39
28
12
26
22
13
11
28
22
15
22
14
29
43
40
28
28
48
39
31
51**
19**
56
71
65
59
69
52
53
70
63
65
32
46
37
38
28*
54*
29
45
33
41
12
23
13
21
17
16
11
21
23*
5*
38
46
48
33
44
35
45
38
58*
32*
22
41
28
32
25
39
21
38
26
32
76
91
78
87
85
77
76
87
85
86
69
76
76
67
69
77
72
72
81
65
34
38
37
34
33
40
32
38
50*
22*
18
26
26
16
20
23
24
20
26
19
14
14
18
10
11
20
22
9
10
14
0.01 < p < 0.05. p < 0.01.
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Table 4 A selection of free-text responses about the impact of tracheostomy. 1 st time scared when suctioning (fear of unknown) next couple got easier. Blocked once but was attended to very quickly. It was a very unpleasant feeling. Can’t remember how many days trachy was in, I am guessing 3 weeks. Apparently I ripped mine out after operation. I don’t really think it was that bad after I was in main ward. Changing it was horrific. I was petrified, felt I could not breathe. Taking it out was easier than I expected and was quick. Despite the discomfort mainly due to very tight stitches, I realised the procedure was inherent in my recovery so tried to work with it. Once tapes had replaced the sutures it was completely comfortable apart from when I had to use the suction pipe. Healing was prompt apart from site of stitches which cause sores on the thin skinned area on my collar bone, and these were worsened during radiotherapy. Overall I think that had the trachy not been so tightly secured the whole episode would have been made more comfortable. I did not actually have to manage the trachy myself apart from not getting it wet. I had worries about my own suctioning while in hospital. I would have felt better as the worse feeling was choking and panic! Felt awful if had to call for nurses to do the suction more than once a night. Healing took much longer than I anticipated. Good care was given by the community nurse in dressings. I believe I pulled the tracheostomy out and didn’t need it again! I found the frame very tight and the removal of the frame was very painful and would benefit from some kind of pain relief. I had a horrific experience one night, when my trachy got blocked up and I could not breath, I had to throw a bottle at the door to get attention from someone to help me! I have had the trachy twice now on 2 major operations. I have to say it was the worst part and it frightened the life out of me. Suction blocking is the worst part. Also the built in heater was so uncomfortable. I think this survey is such a good idea. Thank you for doing this. I only had a trachy in place for a few hours as I vomited and it dislodged and had it removed whilst in ITU. I was not aware of some of the side effects which resulted from having a tracheostomy, therefore I did not cope too well. Suctioning and lack of speech were not explained to me. However I coped and soon learned the hard way, by experiencing these problems. It has been 22 months since this procedure but can honestly say I had no fear or side or ill effects. It is a necessary evil, you have to endure to get to a better place but boy it feels so good when it is taken out, the feeling of complete euphoria. Less than was expected. People that have had a trachy previously say to me that I can’t believe I have had one - hardly any scar mark. I did not enjoy the experience. Nursing staff need to be more aware of the psychological impact that inability to communicate can have on a patient. On leaving hospital nurses had difficulty dressing the wound mainly due to not having correct dressing or expertise. It was very noisy which made sleep difficult. I was very apprehensive when time came to remove trachy. There was social isolation because of unable to speak. The discomfort was due to lot of mucus production, the yanker sucker was my best friend. The trachy is not a pleasant experience and knowledge of how it will be will not make it any easier for me - my apprehension will still run riot. The first time I had the trachy removed it was stuck and the doctor who removed it was very forceful removing it - maybe could have used a lubricant to make it easier to remove. It was a very frightening experience. There were 2 things that I found particularly distressing - not being able to communicate with healthcare professionals particularly in the first days after the operation. I felt incredibly vulnerable and frightened. I could not communicate my concerns. Secondly the tube getting blocked with secretions. It was a miserable experience especially at night time. When I tried to alert night staff on three occasions I was told that there was nothing wrong with me, when I believed I was choking to death. They would not allow me to write my concerns so that I could write my concerns. I eventually asked a nurse to show me how to use the suction pipe so I could relieve the problem myself. I had nightmares for months afterwards. There were times when I needed suction, then it was difficult and frightening and I felt I could not breathe. They took tracheostomy out after 5 days but oxygen levels were down and they tried to put it back in twice but could not. Not very pleasant. I was on oxygen for a day and left 2 days later. All goes well. Trachy scar could have been neater. Was glad to have it removed to speak. When the device was removed, the scar did not heal well, I had to have the wound cauterised.
like more discussion about what to expect, as well as an information leaflet. They thought that it would be helpful to have a manikin with a tracheostomy tube in the pretreatment, multiprofessional assessment clinic, and they thought that preoperative instruction about how to manage it would help them to look after themselves better. They found communication difficult with the tracheostomy in place so additional resources such as LCD eWriters (Boogie BoardTM , Improv Electronics, Kent Displays Inc, Ohio, USA) and other devices would be helpful. Patients felt quite vulnerable and asked for a designated tracheostomy nurse to be appointed to the ward, and for all ward staff to be trained to help with tracheostomies. They also asked to have tracheostomies removed as soon as possible. The poor experience of the patients supports the stratification of risk, which could be done if individual patients were selected, and factors such as site and extent of resection, coexisting conditions, and grade of intubation, were taken into
account. Scoring systems are currently being devised to help in the selection of patients,11,12 and it will be interesting to compare the experiences of those who have, and do not have, a tracheostomy. In conclusion, we have to balance the poor experience of patients against the risk of life-threatening compromise of the airway. Our findings support the need to treat patients as individuals and to target the use of tracheostomy. Not all patients who have free flap reconstruction will require it, and further research is needed on those who do. Certainly from a patient’s perspective, a temporary tracheostomy is not considered a “minor” and routine procedure.
Conflict of Interest We have no conflicts of interest.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006
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Ethics statement/confirmation of patient’s permission The data, which had been collected as part of a service audit rather than for research, met the criteria of the local Clinical Governance Department for service evaluation. The patients’ permission has been obtained. Acknowledgements We would like to that the Head and Neck Cancer Patient and Carer Research Forum based at the Regional Surgical Centre, for initiating this area of investigation and providing financial support. Also the Aintree Research and Development Department for providing trails nurse time. References 1. Marsh M, Elliott S, Anand R, et al. Early postoperative care for free flap head & neck reconstructive surgery - a national survey of practice. Br J Oral Maxillofac Surg 2009;47:182–5. 2. Castling B, Telfer M, Avery BS. Complications of tracheostomy in major head and neck cancer surgery: a retrospective study of 60 consecutive cases. Br J Oral Maxillofac Surg 1994;32:3–5. 3. Halfpenny W, McGurk M. Analysis of tracheostomy-associated morbidity after operations for head and neck cancer. Br J Oral Maxillofac Surg 2000;38:509–12.
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4. Mishra S, Bhatnagar S, Jha RR, et al. Airway management of patients undergoing oral cancer surgery: a retrospective study. Eur J Anaesthesiol 2005;22:510–4. 5. Crosher R, Baldie C, Mitchell R. Selective use of tracheostomy in surgery for head and neck cancer: an audit. Br J Oral Maxillofac Surg 1997;35:43–5. 6. Coyle MJ, Shrimpton A, Perkins C, et al. First do no harm: should routine tracheostomy after oral and maxillofacial oncological operations be abandoned? Br J Oral Maxillofac Surg 2012;50:732–5. 7. Coyle MJ, Tyrrell R, Godden A, et al. Replacing tracheostomy with overnight intubation to manage the airway in head and neck oncology patients: towards an improved recovery. Br J Oral Maxillofac Surg 2013;51:493–6. 8. Mathew SA, Senthilnathan P, Narayanan V. Management of postoperative maxillofacial oncology patients without the routine use of an intensive care unit. J Maxillofac Oral Surg 2010;9:329–33. 9. Malata CM, Foo IT, Simpson KH, et al. An audit of Björk flap tracheostomies in head and neck plastic surgery. Br J Oral Maxillofac Surg 1996;34:42–6. 10. Astrachan DI, Kirchner JC, Goodwin Jr WJ. Prolonged intubation vs. tracheotomy: complications, practical and psychological considerations. Laryngoscope 1988;98:1165–9. 11. Cameron M, Corner A, Diba A, et al. Development of a tracheostomy scoring system to guide airway management after major head and neck surgery. Int J Oral Maxillofac Surg 2009;38:846–9. 12. Lee HJ, Kim JW, Choi SY, et al. The evaluation of a scoring system in airway management after oral cancer surgery. Maxillofac Plast Reconstr Surg 2015;37:19.
Please cite this article in press as: Rogers SN, et al. Patients’ experience of temporary tracheostomy after microvascular reconstruction for cancer of the head and neck. Br J Oral Maxillofac Surg (2016), http://dx.doi.org/10.1016/j.bjoms.2016.08.006