Hemodialysis patients’ satisfaction and perspectives on complications associated with vascular access related interventions: are we listening?

Introduction

Currently, the primary forms of hemodialysis vascular access are the central venous catheter (“catheter”), native arteriovenous fistula (“fistula”) and synthetic arteriovenous graft (“graft”). Fistulas are associated with the lowest morbidity and mortality of all types of vascular access if they mature and function reliably to deliver adequate dialysis. However, many patients require immediate vascular access to provide hemodialysis due to urgent dialysis needs, with catheters as the predominant choice until either a fistula or a graft can be created. Indeed, the majority of patients (>80%) in North America initiate hemodialysis with a catheter (1, 2). This high reliance on catheters is costly to the health care system and importantly, to patient outcomes with its associated high morbidity and mortality (3-4-5-6).

While efforts in many jurisdictions in North America have been highly successful at promoting fistula creation and use (7), others continue to struggle to reduce catheter use, with many patients continuing to require catheters for hemodialysis (1, 8). In a recent international study, Fissell et al (9) speculated that there are likely facility-specific clinical and cultural differences between hemodialysis units accounting for the wide range of catheter use (from >50% to <10% of patients with a catheter) (9). In addition, patient preference has been recognized as an important driver of vascular access choice (9-10-11-12). Thus, a better understanding of patient satisfaction with vascular access is highly relevant to clinical practice, particularly given the emphasis on patient-centered care (13). The majority of research to date has focused on clinical outcomes, and has confirmed the risks associated with catheter use and interventions (3). We sought to understand hemodialysis patients’ perspectives on complications associated with vascular access-related interventions to facilitate the identification of barriers to reducing catheter use in our quality assurance (QA) study.

Materials and methods

This project was undertaken as a QA project at the University Health Network-Toronto General Hospital (UHN-TGH) to better understand patients’ views and satisfaction with their vascular access. This is part of a multi-phase health measurement QA project (May 1, 2011-July 1, 2014) to develop a measurement tool of patient satisfaction with their vascular access. This work represents the first critical stage – the initial questionnaire using the full pool of items. The second phase was the psychometric testing of a smaller pool of items (10), and the third phase was the validation of the questionnaire (called Short Form – Vascular Access Questionnaire [SF-VAQ]) as part of a randomized controlled trial (14).

Recruitment

This comprehensive vascular access questionnaire was administered by six trained research assistants who were external to the care of the patients (i.e. non-health-care providers) to all in-center hemodialysis patients at UHN-TGH who could speak English and who were willing to take the questionnaire. When approaching patients to participate, the research assistants were trained on a script which informed the patient of the purpose of the QA study, the duration and nature of the questionnaire, and that no sociodemographic or personal health information would be collected. As the questionnaire could take anywhere from 30 min to 2 hours to administer, the research assistants could take up to three visits with the patient to complete the questionnaire. Reasons for declining to participate were recorded.

Questionnaire

Using the Vascular Access Questionnaire of Quinn et al (15) as a starting point, a comprehensive list of over 150 items related to patients’ views and satisfaction with their vascular access was generated by a team composed of two nephrologists, a pharmacist, a vascular-access coordinator, and a hemodialysis nurse. These items covered a wide range of complications that could be associated with different interventions on each type of vascular access.

The questionnaire was split into three parts, one each for, fistula, graft and catheter. All patients were asked all questions regardless of the type of vascular access they currently had, as they may have had prior experience with other types of vascular access. For each type of vascular access, the patients were asked nine items about the complications associated with key interventions common to that type of vascular access.

Each item on the questionnaire took on the following question format: “When using a vascular access, how much were you bothered by complication related to the intervention”. For example, for cannulation of fistulas, participants were asked “When using your fistula, how much were you bothered by bruising related to the cannulation”. Patients responded using a 5-point Likert response scale (1 = not at all, 2 = a little, 3 = moderately, 4 = quite a bit, 5 = extremely); higher values indicate more negative satisfaction with their vascular access. If patients did not feel comfortable indicating a Likert value for a specific item, the answer was recorded as “unknown”. For each item for which participants assigned a Likert value they also were also asked in follow-up, the perceived duration of the complication associated with that intervention. For example, “When using a fistula, how long did bruising last as a result of cannulation?”

For fistulas, there were seven associated interventions: angiogram/venogram, angioplasty, thrombolysis, stenting, surgical revision, 2-stage vessel transposition, and cannulation difficulties. For grafts, there were six associated interventions: angiogram/venogram, angioplasty, thrombolysis, stenting, surgical revision, and cannulation difficulties. For catheters, there were five associated interventions: use of tissue plasminogen activator (TPA) or other locking solution, catheter removal and insertion at a new site, catheter exchange over a guidewire, inadvertent catheter removal (e.g. fell out) and “other” interventions.

Each intervention was associated with nine potential complications. Complications were broadly divided into two main domains: (i) physical complications and (ii) disruption to routine. Physical complications included bruising, bleeding, swelling, and pain. Disruption to routine complications included hospitalization, lengthened dialysis duration, sleep disruption, and disruption to daytime routine. Infection was the 9^th complication, but it remained an independent domain since it did not specifically fit the physical complication domain or the disruption of routine domain.

The questionnaire also contained an open-ended question for patient feedback on the design of the questionnaire. This feedback was retained for use in the development and psychometric testing of a vascular access-specific questionnaire (SF-VAQ) (10).

Data management and analysis

The hard copy data from the questionnaires were entered in duplicate into a Microsoft Excel 2010 database, and validated against hard copy questionnaires for consistency. The data were then exported into SPSS 22© for analysis. As in previous studies of chronic kidney disease patients, satisfaction and quality-of-life surveys that employed Likert-type scales (16, 17), descriptive statistics (including the mean Likert value per item and within domains for the degree of bother associated with each intervention and complication [1 = not at all, 2 = a little, 3 = moderately, 4 = quite a bit, 5 = extremely]) were calculated by vascular access type (fistula, graft, catheter). A clinically important difference on a 5-point Likert scale is approximately 0.3 points (18).

Results

Participants

A total of 171 patients were approached and 140 patients (82%) participated. Twenty-two patients declined to participate because they were not interested, 6 were too tired or asleep, and 3 indicated that the questionnaire was too long. Both incident and prevalent dialysis patients were included. The proportions of patients by current and previous vascular access type and experience of complications are shown in Table I. The most common type of vascular access used by patients was catheters (58.6%), followed by fistulas (33.6%), and grafts (13.6%) (categories were non-mutually exclusive). The most commonly experienced interventions were angiogram/venogram for fistulas (35.7%), followed by TPA or another lock for catheters (33.6%), and other interventions for catheters (30.0%).

TABLE I -

Degree of bother associated with vascular access-related interventions (mean Likert values by domain)

Intervention	Mean Likert value by domain			Experience of intervention
	Physical complications	Disruption to routine	Infections	n	% of total N**
* Patients were only asked questions from the ‘disruption to routine’ domain for the intervention ‘TPA or other lock’ as no physical or infectious complications seemed likely.
** The percentage represents the number of patients who had that intervention for that type of access out of the total number of patients included in the study sample.
TPA = tissue plasminogen activator.
Fistula
Angiogram/venogram	1.47	1.19	1.09	50	35.7
Angioplasty	1.82	1.28	1.13	39	27.9
Thrombolysis	1.33	1.21	1.31	19	13.6
Stenting	1.87	1.41	1.26	15	10.7
Surgical revision	2.27	1.59	1.34	25	17.9
Stage 2 transposition	1.83	1.36	1.31	8	5.7
Cannulation difficulties	2.47	1.31	1.20	36	26.7
Overall degree of bother associated with physical complications for all interventions	1.87	1.33	1.23
Graft
Angiogram/venogram	1.42	1.19	1.06	11	7.9
Angioplasty	1.97	1.32	1.12	13	9.3
Thrombolysis	1.35	1.26	1.11	7	5.0
Stenting	2.01	1.57	1.31	6	4.3
Surgical revision	2.54	1.63	1.60	5	3.6
Cannulation difficulties	2.23	1.23	1.13	10	7.3
Overall degree of bother associated with physical complications for all interventions	1.92	1.37	1.22
Catheter
TPA or other lock*	N/A	1.24	N/A	47	33.6
Catheter removal and insertion at new site	1.79	1.43	1.61	40	28.6
Catheter exchange over a guidewire	1.67	1.33	1.48	32	22.9
Catheter inadvertently fell out	2.17	1.74	2.24	18	12.9
Other intervention on catheter	1.18	1.45	1.72	42	30.0
Overall degree of bother associated with physical complications for all interventions	1.56	1.44	1.76

Physical complications

The results of the questionnaire’s “physical complications” domain for each intervention by vascular access type are in Table I. Overall, the mean Likert values for the physical complications domains (indicating perceived bother following bruising, bleeding, swelling, and pain associated with vascular access-related interventions) were 1.87, 1.92, and 1.56 for fistulas, grafts, and catheters, respectively. The complications with the highest mean Likert values in the physical domain were cannulation difficulties at 2.47 for fistulas, surgical revision at 2.54 for grafts, and catheter inadvertently falling out at 2.17 for catheters. Figures 1, 2, and 3 show the mean Likert values for the degree of bother for physical complications associated with interventions for fistulas, grafts, and catheters, respectively. The findings for physical complications between fistulas and grafts were very similar.

Fig. 1 - Fig. 2 -Fig. 3 -

Disruption of routine

Table I shows the results of the questionnaire’s “disruption of routine” domain for each intervention by vascular access type. The mean Likert value for the disruption of routine domain was 1.33, 1.37, and 1.44 for fistulas, grafts and catheters, respectively. No mean Likert value exceeded 2 for any intervention across this domain. The highest mean Likert value for disruption of routine for fistulas and grafts was surgical revision of fistulas and grafts at 1.59 and 1.63, respectively, and the highest mean Likert value for catheters was for “the catheter inadvertently falling out” at 1.74. Figures 1, 2, and 3 show the mean Likert values for the degree of bother in terms of disruption to routine associated with interventions for fistulas, grafts, and catheters, respectively. Overall, the mean Likert values were lower for the “disruption of routine” domain than for “physical complication” domain for all vascular access types.

Infection

The mean Likert value for degree of bother associated with infection was 1.23, 1.22, and 1.76 for fistulas, grafts, and catheters, respectively (Tab. I). Patients were most bothered by infections associated with “catheter inadvertently falling out” with a mean Likert value at 2.24. The greatest mean duration bothered by the infectious complications was longest for catheter removal and insertion at a new site (110.4 hours) followed closely by catheter exchange over a guidewire (109.5 hours) (Tab. II).

TABLE II -

Patient’s perspective on fistulas - mean Likert values for the degree of bother in physical complications, disruption to routine, and infectious complications associated with interventions. Note: The y axis represents the mean Likert value within a domain. The interventions that patients were asked their perspective on, are listed on the x axis. Each bar represents the degree of complications within that domain, as rated from the patient’s perspective on Likert scale of 1-5 (1 = not at all, 5 = extremely bothersome).

Patient’s perspective on grafts - mean Likert values for the degree of bother in physical complications, disruption to routine, and infectious complications associated with interventions. Note: The y axis represents the mean Likert value within a domain. The interventions that patients were asked their perspective on, are listed on the x axis. Each bar represents the degree of complications within that domain, as rated from the patient’s perspective on Likert scale of 1-5 (1 = not at all, 5 = extremely bothersome).

Patient’s perspective on catheters - mean Likert values for the degree of bother in physical complications, disruption to routine, and infectious complications associated with interventions Note: The y axis represents the mean Likert value within a domain. The interventions that patients were asked their perspective on, are listed on the x axis. Each bar represents the degree of complications within that domain, as rated from the patient’s perspective on Likert scale of 1-5 (1 = not at all, 5 = extremely bothersome).

Mean duration of infectious complications by access type

Intervention	Fistula	Graft	Catheter
	Time (hours)	Time (hours)	Time (hours)
Angiogram/venogram	20.4	21.9	N/A
Angioplasty	21.1	25.2	N/A
Thrombolysis	67.6	56.0	N/A
Stenting	14.9	43.5	N/A
Surgical revision	31.5	74.8	N/A
Stage 2 transposition	21.8	N/A	N/A
Cannulation difficulties	29.4	32.1	N/A
Catheter removal and insertion at new site	N/A	N/A	110.4
Catheter exchange over a guidewire	N/A	N/A	109.5
Catheter inadvertently fell out	N/A	N/A	53.8
Other intervention on catheter	N/A	N/A	105.1
Overall	29.5	42.3	94.7

Figures 1, 2, and 3 show the mean Likert values for the degree of bother for infectious complications associated with interventions for fistulas, grafts, and catheters, respectively. The mean Likert values for the “infection” domain were overall lower than for the “physical complications” domain, and comparable to the “disruption of routine” domain. The results of fistulas and grafts are similar, and on average were very low with the vast majority in the “not at all” bothered category.

Discussion

The main finding of our study was that physical vascular access complications (pain, bruising, swelling, bleeding) were of highest concern for patients, more so than disruption of routine or infectious complications. When comparing across domains, the mean Likert values were 1.87, 1.92, and 1.56 for physical complications, 1.33, 1.37, and 1.44 for disruption to routine, and 1.23, 1.22, and 1.76 for infectious complications for fistulas, grafts, and catheters, respectively (see Tab. I). From a patient perspective, the physical complications of fistulas and graft cannulation are the primary sources of serious concern. Further, the entire domain of “disruption of routine” across all vascular access types had lower Likert scores than that of the “physical complications” domain. In other words, physical vascular access complications are more concerning to patients than potential hospitalizations, lengthened stays on dialysis, or disruption to sleep and day routine. Indeed, even though catheters were associated with the highest Likert score of all types of vascular access for “disruption in routine” domain, it does not appear to be a source of concern compared with the physical complications associated with fistulas and grafts.

This concern of physical complications is consistent with a previous study that also interviewed patients, nurses, and physicians about vascular access (19). In a study by Xi et al (12), when patients were asked their major concerns with their vascular access, thrombosis (59%), “leakage of blood” into the subcutaneous tissues (24%), pain (5%), and bleeding (5%) were the most important. While pain during cannulation was identified as a major concern in only 5% of patients, it was the most common problem experienced in 39% of patients.

A study by Fissell et al (9), of 2815 hemodialysis patients across 12 countries, found that 44% of Canadians preferred catheters over fistulas and grafts. This preference for catheters was positively associated with current catheter use (odds ratio [OR] = 60.3, 95% confidence interval [CI] = 36.5-99.8) (13). Chaudry et al (11) conducted a questionnaire of 322 patients dialyzing via catheter access to understand the reason for persistent catheter use. Almost 35% of patients cited “non-medical” reasons for preferring their catheter including less pain associated with catheter use as compared to fistulas and grafts, perceived convenience and reliability, and patients’ comfort with their catheter due to lack of complications in their experience. Approximately 20% of patients in this study also cited fear of cannulation as a reason for their persistent catheter use.

In the study using the original Vascular Access Questionnaire (VAQ) to measure patient-reported views of access-related problems (15), Quinn et al (15) found that similar to our current study, patients with fistulas were also more likely to be bothered by the appearance of their access, pain during cannulation, bruising, and swelling than their counterparts who used catheters. They also found, however, that patients using fistulas were more likely to recommend their access to a friend and less likely to want to switch to another type of access.

The degree of bother associated with infection was certainly higher for catheters than for other access types, but this mean rating was less than the rated degree of bother for the physical cannulation complications associated with fistulas and grafts. This is consistent with the findings of previous studies. Over a decade ago, Bay et al (19) reported that ease of cannulation and appearance were identified as major advantages of catheters, while only 3% of patients felt that infection was a significant problem. Quinn et al (15) reported that only 3% of patients using catheters were concerned about infectious complications. The findings of both Bay et al and Quinn et al that patients were not concerned about infectious complications of catheters are consistent with our study results.

The mean Likert values for infectious complications of vascular access-related interventions were overall lower than those in the physical complications domain, and comparable to the disruption of routine domain. This is at striking odds with the priorities of health-care providers and administrators based on the clear clinical and economic data associating catheter-related infections with increased morbidity, rising hospitalization rates, high treatment costs, and poor survival compared to use of a fistula or graft (3, 5, 20-21-22-23). Indeed, while it is not surprising that patients were not concerned that catheter-related infection drives much of the cost associated with catheter use (24), our findings may help explain why, despite great efforts to educate patients regarding the health consequences of catheter-related infection, that it may not motivate them to reduce catheter use. The inconvenience or disruption in life routine from a hospitalization due to catheter-related sepsis may not be as important as the pain associated with the catheter removal and reinsertion to manage the catheter-related sepsis. Such insights may assist with future educational efforts to reduce catheter use and prevent complications.

On the flipside of reducing catheters is increasing fistula creation and use. The results of this study suggest that the physical complications associated with cannulation are a major source of dissatisfaction with fistula as a vascular access choice for patients. In this study, the most common type of vascular access currently used by the (both incident and prevalent) patients was catheters (58.6%), followed by fistulas (33.6%), and grafts (13.6%) (categories were non-mutually exclusive). The rate is fairly consistent with fistula usage rates in Ontario at the time of the study. In order to improve fistula use rates, future research should focus on ways of alleviating patients’ concerns surrounding the physical complications associated with fistulas, especially cannulation.

Our study has several limitations. It was conducted in a Canadian dialysis population in a single-payer health-care system and patient experiences may differ from those of patients in other countries. However, the impact of vascular access in terms of physical complications, disruption in daily routine, and infectious consequences should not differ greatly by locale. At the time of application, the questionnaire was not validated, though the results of this questionnaire has been used in the development and reliability testing of a new, validated questionnaire called the Short Form Vascular Access Questionnaire (SF-VAQ) (10). Further, in this analysis we assume by taking the mean within ‘physical complications’ and ‘disruption to routine’ domains, that all items within that domain are similarly weighted. Additionally, by taking the mean for each access type, we assume that all interventions within and across access type are weighted the same, even though the interventions are qualitatively different within and between access types. Lastly, this questionnaire was limited to English speaking patients and those who were receiving in-center hemodialysis. Self-care and satellite dialysis patients may have different perceptions of their vascular access, since many of them may cannulate their own vascular access. However, the in-center hemodialysis patient represents the majority of hemodialysis patients, thus, increasing the generalizability of our study. Further study of patient satisfaction and preferences is needed to fully understand what drives access choice by patients.

Conclusions

Overall, this in-depth study of hemodialysis patients’ perspectives on vascular access-related interventions and their associated complications revealed that patients are more bothered and concerned by the physical complications associated with cannulation of fistulas and grafts such as swelling, bleeding, pain, and bruising than vascular access-related infectious complications and disruptions to their daily routine. This provides insight into the barriers faced by practitioners when trying to reduce catheter use and stimulus to improve on strategies to mitigate physical complications when trying to increase fistula use.

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