Abstract
Study design
Observational study.
Objectives
To evaluate the perceptions of patients requiring a tracheostomy tube and to identify possible different perceptions in critically ill patients with tracheostomy tubes who have acute (ASCI) or chronic spinal cord injuries (CSCI).
Setting
Medical and surgical intensive care units (ICU) and intermediate care unit of the BG University Hospital Bergmannsheil Bochum, Germany.
Methods
Patients who met the inclusion criteria completed a 25-item questionnaire on two consecutive days regarding their experiences and perceptions in breathing, coughing, pain, speaking, swallowing, and comfort of the tracheostomy tube.
Results
A total of 51 persons with ASCI (n = 31) and CSCI (n = 20) were included with a mean age of 53 years. Individuals with ASCI reported significantly more frequent pain and swallowing problems as compared to individuals with CSCI (p ≤ 0.014) at initial assessment. There were no differences between ASCI and CSCI reported with respect to speaking and overall comfort.
Conclusions
It is necessary to regularly assess the perceptions of critically ill patients with tracheostomy tubes with ASCI or CSCI in the daily ICU care routine. We were able to assess these perceptions in different categories. For the future, evaluating the perception of individuals with SCI and a tracheostomy should be implemented to their daily routine care.
Trial registration
DRKS00022073.
Subject terms: Trauma, Signs and symptoms
Introduction
When weaning patients with acute spinal cord injury (ASCI) off mechanical ventilation (MV) while in the intensive care unit (ICU) the most important determinants are the patterns and levels of motor, sensory, and autonomic neurological impairment [1, 2]. The need for MV in persons with ASCI has a variable incidence. Up to 77% of cervical spinal cord injuries (SCI) have been shown to require at least temporary MV, and in 5–8% of all individuals with chronic spinal cord injury (CSCI) long-term MV is necessary [3, 4]. SCI-related complications in individuals with CSCI are common and a frequent cause of morbidity and mortality with increased rehospitalization rates and the need for MV [5, 6].
A Tracheotomy is a common procedure in prolonged mechanically ventilated spinal cord-injured individuals with a reported incidence of tetraplegia between 10 and 60% [7–9]. This procedure offers several benefits over prolonged endotracheal intubation in critically ill persons during weaning off MV or for long-term MV. These benefits include the reduction of dead space, airway resistance, labored breathing, improved personal comfort, decreased need for sedation, effective communication, airway clearance with reduced risk of aspiration, and improved oral care [10]. Despite these medical advantages during weaning, negative impacts often occur in individuals with a tracheostomy. These impacts may include anxiety, inability to talk, swallowing dysfunction, pain due to the tube, and increased effort to sustain breathing [11]. Furthermore, guidelines for tracheostomy management in spinal cord injured individuals mainly focus on prognostic factors for respiratory dysfunction, prolonged ventilator support, and the timing of tracheotomy. They also address issues like dysphagia and decannulation. However, these guidelines do not capture the experiences and perceptions of individuals depending on a tracheostomy tube [12–16].
To address this knowledge gap, we prospectively surveyed critically ill individuals with ASCI or CSCI and a tracheostomy, aiming (1) to evaluate their perception and (2) to find possible differences in perception between individuals with acute and chronic spinal cord injuries.
Methods
Study design and selection criteria
This prospective, single center, observational study was performed at three medical and surgical ICUs and one intermediate care unit (IMC) of a university hospital. The university hospital has 78 beds dedicated to the treatment of SCI, including 10 ICU/IMC beds. A total of 400 to 500 persons are treated for acute spinal cord injuries or their complications annually. This includes about 80 acutely injured persons with tetraplegia per year.
The study was approved by the author’s institutional review board (No. of approval 20-6887) and registered at the German Clinical Trials Register (DRKS00022073). It adheres to the “Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement” (Supplementary Information) [17].
All eligible individuals were prospectively surveyed from June 8, 2020, to March 8, 2021. All included individuals met the following criteria: (1) ASCI or CSCI; (2) tracheostomy tube for more than 48 h and expected to remain cannulated at least for the next 7 days; (3) adequate cognitive and motoric skills to answer the survey manually, verbally, or with support of eye-tracking devices (ET); (4) over 18 years of age; (5) a score of −1, 0 or 1 points on the Richmond agitation-sedation scale (RASS) [18] or a score of < 3 points on the nursing delirium screening scale (Nu-DESC) [19] in individuals without sedation; and (6) successful completion of the questionnaire on two consecutive days. The procedure was verbally explained to the persons and informed consent was obtained in written form, or if not possible, verbally, via head nodding, or by blinking. This was confirmed by persons who were unrelated to the investigation.
Out of 57 eligible participants, 6 participants were excluded because of the following conditions: language barrier (n = 3), incomplete data (n = 2), and refusal to participate (n = 1). The remaining 51 people were enrolled in the study (Fig. 1).
Fig. 1.
Flow diagram showing results of participant search (n = 51).
Demographic and clinical data
Standard parameters, such as sex, age, reason for hospital admission, length of stay in hospital, etc., were applied to describe the demographic data of the included persons. The Charlson comorbidity index (CCI) as a measure of comorbidity burden was also calculated for each participant [20]. ASCI and CSCI were classified according to the recommendations as described by Fawcett et al. [21] and Burns et al. [22]. Both groups were divided into complete or incomplete tetraplegia or paraplegia of the cervical and thoracic spinal cord and classified according to the American Spinal Injury Association (ASIA) impairment scale (AIS) A to D [23]. Patients were admitted to the ICU or IMC for various reasons, including major trauma, non-abdominal sepsis, acute abdomen, exacerbation of chronic obstructive pulmonary disease, adjustments to long-term mechanical ventilation, and cancer-related conditions.
Questionnaire
We used a 25-item questionnaire (Table 1) allowing the differentiation of six sub-categories (respiration, coughing, pain, speaking, swallowing, comfort) [24]. Participants reported frequency of problems in the sub-categories by responding to items on a 4-point Likert scale (0 = never, 1 = sometimes, 2 = often, 3 = always).
Table 1.
The used 25-item questionnaire.
| Item |
|---|
| Respiration: |
| R1: How often is breathing complicated by your tracheostomy tube? |
| R2: How often do you experience shortness of breath? |
| R3: How often do you feel that your trachea is dry? |
| Coughing: |
| C1: How often do you cough? |
| C2: Do you have coughing attacks while speaking? |
| C3: How often do you feel that you cannot cough up mucus properly? |
| C4: How often do you need suctioning? |
| Pain: |
| P1: How often do you have a foreign body sensation? |
| P2: How often does your cannula hurt when you swallow? |
| P3: How often does your cannula hurt when you move or are moved? |
| P4: How often do you have pain when suctioning? |
| P5: How often do you have pain when changing your cannula? |
| Speaking: |
| S1: How often do you think you are well understood with whispered speech? |
| S2: How often do you feel the volume of your speech is normal? |
| S3: How often does your cannula hurt when you speak? |
| S4: How often do you feel out of breath when speaking? |
| Swallowing: |
| SW1: How often does your tracheostomy tube interfere with swallowing liquids or food? |
| SW2: How often do you feel saliva flowing into the trachea? |
| SW3: How often are you satisfied with your currently inserted tracheal cannula? |
| SW4: How often are you afraid of choking or coughing while eating or drinking? |
| Comfort: |
| CO1: How often do you feel shame or disgust because of your tracheostomy tube? |
| CO2: How often are you afraid of your cannula slipping out? |
| CO3: How often do you feel that your tracheostomy tube fits well? |
| CO4: How often does an unblocked tracheostomy tube feel more comfortable than a blocked tracheostomy tube? |
| CO5: How often do you find the fixation of your tracheostomy tube comfortable? |
For further details, see [24].
The questionnaire was developed by the interdisciplinary ICU team consisting of critical care nurses, intensivists, psychologists, speech and occupational therapists, and physiotherapists. Input was provided by patients who were in the process of weaning off MV or from MV to long-term ventilation.
Standardized assessment
Individuals potentially fulfilling our inclusion criteria were identified during the daily ward rounds of the interdisciplinary ICU and IMC teams. Prior to inclusion and to each session, the person’s level of consciousness was assessed using the RASS and the Nu-DESC. Depending on the current fine motor capabilities of their arms and communication skills, the participants were either able to answer the survey manually with paper and pen or were able to answer verbally after the questions were read aloud by the experimental supervisor, alternatively the persons were able to answer the questionnaire via an eye-tracking device (ET). The Tobii Dynavox I-15 + ET device (Tobii Dynavox, Danderyd, Sweden), as a form of augmentative and alternative communication was used for this in verbally restricted persons with limited fine motor capabilities [25]. This ET consists of a monitor, infrared light sources, infrared cameras, and algorithms. The projectors create a pattern of near-infrared light on the eyes. The camera takes high-resolution images of the user’s eyes. Image processing involving machine learning algorithms are used to determine the eyes’ position and gaze point on the monitor. The setup allows the patient to command the position of the mouse cursor with their eyes. By gazing at a response option on the monitor for at least 1 s, the patient can register a response. The ET computer is a commercially available system that runs on a Windows 10 operating system. For this study, the ET was mounted on a holder with wheels for bedside use. On the next day, the survey was repeated with each participant.
Statistical analysis
Statistical analysis was performed using Microsoft® Office Excel® for Mac 2019 (Microsoft Corporation, Redmond, WA, USA) and IBM® SPSS® Statistics Version 28 2021 (IBM Corporation, Armonk, NY, USA). Evaluation of categorical variables was carried out using the Pearson’s Chi square test or Fisher’s exact test. Student’s t-test was applied to analyze continuous variables. Mean values per category were calculated from the corresponding questions with a 4-point Likert-Scale response format (0 = never, 1 = sometimes, 2 = often, 3 = always). For differences in perceptions per category between survey days without differentiating patient groups, a t-test for paired values was applied. For differences in perceptions of individuals with ASCI or CSCI, a t-test for independent samples was performed. Significance for both methods was set at p ≤ 0.05.
Results
Demographic and clinical data
The demographic and clinical data of the 51 enrolled participants are listed in detail in Table 2 and in Table 3. In all participants, a flexible tracheostomy tube was used for MV. No person of either group had a spinal cord injury of the lumbar spine. In 12 of the 20 participants with CSCI (60%), long-term ventilation via tracheostomy was required before admission to the ICU with a mean time of 11.1 ± 7.9 years.
Table 2.
Demographic data of enrolled patients (n = 51).
| ASCI (n = 31) | CSCI (n = 20) | p value* | |
|---|---|---|---|
| Referral | 30 (96.7) | 8 (40) | <0.001 |
| Male | 26 (83.8) | 19 (95) | NS |
| Age (years) | 50.4 ± 19.6 | 57.6 ± 12.9 | NS |
| CCI before hospital admission | 1.1 ± 1.5 | 4.4 ± 1.9 | <0.001 |
| Tetraplegia | 26 (83.8) | 13 (65) | NS |
| Paraplegia | 5 (16.1) | 7 (35) | NS |
| Complete | 16 (51.6) | 14 (70) | NS |
| Incomplete | 15 (48.4) | 6 (30) | NS |
| Reason for hospital admission | |||
| Major trauma | 26 (83.8) | 1 (5) | <0.001 |
| ISS (points) | 31 ± 7 | 25 | NS |
| Non-abdominal Sepsis | 2 (6.4) | 6 (30) | <0.045 |
| Acute abdomen | 1 (3.2) | 6 (30) | <0.011 |
| COPD | – | 2 (10) | NS |
| Modification of mechanical ventilation | – | 5 (25) | NS |
| Cancer | 2 (6.4) | – | NS |
Data presented as absolute numbers (percentage) or mean ± standard deviation.
ASCI acute spinal cord injury, CSCI chronic spinal cord injury, CCI Charlson comorbidity index, ISS injury severity score, COPD chronic obstructive pulmonary disease, NS not significant.
*Student’s t test and χ2 test.
Table 3.
Clinical data of enrolled patients (n = 51).
| ASCI (n = 31) | CSCI (n = 20) | p value* | |
|---|---|---|---|
| LOS on the ICU/IMC | 51.6 ± 36.2 | 49.7 ± 67.5 | NS |
| Ventilation days on the ICU/IMC | 37 ± 46.6 | 39.1 ± 67.7 | NS |
| Technique of tracheostomy | |||
| Surgical | 10 (32.2) | 6 (30) | NS |
| Percutaneous dilatational | 21 (67.7) | 14 (70) | NS |
| Size of tracheostomy tube | 8 ± 0.5 | 8.1 ± 0.6 | NS |
| Time from tracheostomy to survey (days) | 29 ± 33.3 | 2156.9 ± 2878.1 | <0.001 |
| Time from ICU/IMC admission to survey (days) | 31.9 ± 26.5 | 32.7 ± 62.4 | NS |
| Mode of ventilation (during testing) | |||
| PSV | 1 (3.2) | 1 (5) | NS |
| VCV | 20 (64.5) | 16 (80) | NS |
| SBT | 10 (32.2) | 3 (15) | NS |
| Decannulation | 18 (58) | 3 (15) | <0.003 |
| Time from tracheostomy to decannulation | 59.8 ± 50 | 135.3 ± 56.5 | <0.008 |
| Total ventilation days | 55.5 ± 60.1 | 49 ± 79.6 | NS |
| LOS hospital (days) | 169.1 ± 116.1 | 98.1 ± 108.1 | <0.009 |
| Discharge/transfer from hospital to | |||
| Rehabilitation | 17 (54.8) | – | NS |
| Home | 6 (19.3) | 10 (50) | <0.032 |
| Nursing home | 6 (19.3) | 8 (40) | NS |
| Survival | 29 (93.5) | 18 (90) | NS |
Data presented as absolute numbers (percentage) or mean ± standard deviation.
ASCI acute spinal cord injury, CSCI chronic spinal cord injury, LOS length of stay, ICU intensive care unit, IMC intermediate care unit, PSV pressure-support ventilation, VCV volume-controlled ventilation, SBT spontaneous breathing trial, NS not significant.
*Student’s t test and χ2 test.
The distribution of tetraplegia and paraplegia, as well as the loss of neural function according to the AIS are described in Table 4. The majority of participants in both groups (ASCI 83.8% vs. CSCI 70%) suffered a lesion of the cervical spine with subsequent tetraplegia. The rate of complete tetraplegia was 38.7% in participants with ASCI and 40% in participants with CSCI.
Table 4.
AIS during testing on the ICU/IMC with levels of tetraplegia and paraplegia (n = 51).
| Level of tetraplegia | Level of paraplegia | ||||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| C1 | C2 | C3 | C4 | C5 | C6 | C7 | TH4 | TH5 | TH7 | TH8 | TH10 | TH11 | TH12 | ||
| ASCI (n = 31) | |||||||||||||||
| AIS A | 16 (51.6) | 1 | 4 | 2 | 3 | 2 | – | 1 | 1 | – | 1 | – | – | – | 1 |
| AIS B | 11 (35.5) | – | – | 1 | 1 | 5 | 2 | – | – | 1 | – | 1 | – | – | – |
| AIS C | 2 (6.4) | – | – | – | 1 | – | 1 | – | – | – | – | – | – | – | – |
| AIS D | 2 (6.4) | – | – | – | – | – | 2 | – | – | – | – | – | – | – | – |
| CSCI (n = 20) | |||||||||||||||
| AIS A | 14 (70) | 1 | – | 4 | – | 2 | 1 | – | 2 | – | 1 | 1 | 1 | 1 | – |
| AIS B | 5 (25) | – | – | – | 3 | 1 | – | – | – | – | 1 | – | – | – | – |
| AIS C | 1 (5) | – | – | – | – | – | 1 | – | – | – | – | – | – | – | – |
Data presented as absolute numbers (percentage). Comparing the frequency of AIS A diagnoses (vs. others) in ASCI vs. CSCI suggested by Chi-squared suggested that there is no systematic difference (p = 0.193).
ASCI acute spinal cord injury, AIS American Spinal Injury Association Impairment Scale, CSCI chronic spinal cord injury.
Results on perceptions and appraisals
Analysing the data from the first day of the evaluation we obtained a different profile for ASCI and CSCI persons across the six categories. ASCI persons, on average, reported significantly more frequent pain (p ≤ 0.014) and problems in swallowing (p ≤ 0.002) as compared to CSCI persons (Table 5). The ASCI persons also reported more problems with breathing and coughing, but this difference didn’t reach significance. Interestingly, no difference between ASCI and CSCI was reported with respect to speaking and overall comfort.
Table 5.
Mean values of the given responses for the respective categories for the first (second) day of the survey (n = 51).
| Breathing | Coughing | Pain* | Speaking | Swallowing* | Comfort | |
|---|---|---|---|---|---|---|
| ASCI (n = 31) | 1.33 (1.27) | 1.38 (1.34) | 1.22 (1.23) | 1.13 (1.12) | 1.31 (1.30) | 1.42 (1.38) |
| CSCI (n = 20) | 1.13 (1.12) | 1.17 (1.18) | 0.73 (0.86) | 1.08 (1.08) | 0.86 (0.85) | 1.45 (1.42) |
Mean values were calculated from the responses of the corresponding categories on a 4-point Likert-Scale (0 = never, 1 = sometimes, 2 = often, 3 = always). The asterisks indicate significant differences between the individuals (p ≤ 0.05).
On day two, the ASCI group still reported more problems with swallowing than the CSCI group (p ≤ 0.002). There was a marginally non-significant difference in reported pain on day two as well, the ASCI group reported higher pain than the CSCI group (p ≤ 0.065). The overall results for ASCI and CSCI for both survey days can be found in Table 5.
Discussion
A tracheotomy is a common procedure in prolonged MV in individuals with tetraplegia with several benefits for the patient [7–10]. There is currently limited research on the perception of patients with tetraplegia and an indwelling tracheostomy tube. None of the studies differentiate between ASCI and CSCI. Assessing critically ill individuals’ perspective is highly relevant for improving the quality of tracheostomy usage in the ICU. So far handling tracheostomies has mainly been based on the S2k-Guidelines. With the current work we show that taking patient self-report into account is feasible and highly informative for patient handling. Furthermore, we document group differences between ASCI an CSCI that can inform handling even before obtaining self-report.
Our results suggest that differentiating among the sub-categories can indeed help to obtain a differentiated profile between patients with ASCI and CSCI: At first assessment ASCI persons reported more frequent pain and problems in swallowing than CSCI persons. This confirms the relevance of well-being as previously described in the aforementioned review and assessed with a short self-report instrument [26].
Receiving a tracheostomy tube can have a great impact on critically ill individuals. Additionally, anxiety and fear often occur in these patients [27]. For individuals with ASCI, these feelings are compounded, first due to the severity of the injury and second due to the severity of the altered body image [28].
In the context of this study, we were able to highlight patients’ experiences and perceptions more clearly. We used a questionnaire, developed by an interdisciplinary team, to assess the perceptions and experiences of critically ill individuals with a tracheostomy tube in terms of breathing, coughing, pain, speaking, swallowing, and comfort. A review by Newman et al. has shown that apart from swallowing and comfort difficulties in ASCI persons, both groups report no or rarely perceived problems in the remaining categories. Consistent with their results [11], we found no respiratory problems.
It should be highlighted that ASCI patients seem to adjust to the new form of breathing in a relatively short time. Potentially, the current focus of patients’ perception is not on breathing or the method of ventilation but on a completely altered perspective of their previous life. Furthermore, on the first day of the survey, individuals with ASCI noted a higher frequency of pain symptoms and swallowing issues compared to those with CSCI. It’s possible that acutely injured individuals might not have received an appropriate cannula yet or may need some time to acclimate to their condition. The ASCI group continued to report increased perceived pain symptoms and swallowing problems. However, it’s crucial to emphasize that individuals with ASCI only reported increased difficulties in two out of the six categories. These results accentuate that it is important to capture individuals’ perceptions by default. Individuals with ASCI in particular may need better coverage with analgesics, more frequent suction, or a better fitting canula to increase their comfort. Complementing the recommendations from previous research, it can be stated that it is necessary to record the individuals’ perceptions regarding the categories of breathing, coughing, pain, speaking, swallowing, and comfort of tracheostomy tube, in order to, among other things, create novel tools and strategies that enhance the quality of life for the patients [26]. In addition, the ASCI population reported increased pain symptoms and problems with swallowing. The reported increased pain intensity is consistent with results of, among others, Cuff et al. [29]. Here it must be emphasized that a stronger pain intensity co-occurs with depression [30, 31]. In this respect, a regular recording of the patients’ perception is also indicated in order to reduce the prevalence of depression in SCI patients.
Limitation
First and foremost, the limited size of the sub-samples of the ASCI and CSCI patients should be noted. Also, the perspective should be extended to compare ASCI and CSCI patients to other patients with tracheostomies.
It should be noted that additional repetitions of the survey (and larger delays) are needed to more adequately assess potential dynamics in the wellbeing of patients with tracheostomies across the six categories over time for different patient groups. This is promising as well as challenging, as patients might be transferred or could leave the hospital after the initial survey. Different from prior research on the perception of patients with an indwelling tracheostomy tube, this study places the focus on the perceptions of critically ill individuals with spinal cord injuries and tracheostomy tubes with special emphasis on differences between persons with ASCI and CSCI. Future studies should extend our knowledge about the frequency of tracheostomy problems in individuals with ASCI and CSCI in larger cohorts. To obtain a more elaborate picture of the changes in problems with respiration, coughing, pain, speaking, swallowing, and comfort, more than two assessments per patient are needed. This would allow relating changes in treatment to changes in perception and appraisal of tracheostomy problems.
Conclusion
This study demonstrated that perceptions concerning the tracheostomy tube vary between individuals with ASCI and CSCI. Therefore, it is important to regularly assess the perceptions of critically ill individuals with a tracheostomy in the daily ICU care routine. With the used questionnaire, we were able to assess subjective perceptions in critically ill individuals with ASCI or CSCI in different categories. For the future, recording the perception of individuals with SCI and tracheostomies in the ICU should be implemented to their daily routine care, in order to improve the patient’s well-being and to possibly prevent depression.
Acknowledgements
We thank Monica Monica Mary Heil for language editing the manuscript. This work was supported by the ”Junior Clinician Scientist Program” of the Ruhr-University Bochum, Germany [grant number K129-19]. The funding bodies did not influence the study’s design, the collection, analysis, and interpretation of data, nor in writing the manuscript.
Author contributions
Concept/design: CWe, CWa, RG, CU; Data analysis/interpretation: CWe, CWa, RG, CU; Writing of article: CWe, AS, CU; Critical revision of the article: CWe, CWa, UH, OC, AS, TAS, RG, MA, CU; Approval of article: CWe, CWa, UH, OC, AS, TAS, RG, MA, CU; Funding secured by: CU; Data collection: CU.
Data availability
Data that was generated and analyzed during this study can be found within the published article. Additional data are available from the corresponding author on reasonable request.
Competing interests
The authors declare no competing interests.
Ethical approval
This study was performed in line with the principles of the Declaration of Helsinki. It was approved by the local ethics committee (Ruhr-University Bochum, Germany, grant number of approval 18-6620-BR). Informed consent was obtained from each person. We certify that all applicable institutional and governmental regulations concerning the ethical use of human volunteers were followed during this research.
Footnotes
Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
Data that was generated and analyzed during this study can be found within the published article. Additional data are available from the corresponding author on reasonable request.