Patients’ Perspectives on Hemodialysis Vascular Access: A Systematic Review of Qualitative Studies

Original Investigation Patients’ Perspectives on Hemodialysis Vascular Access: A Systematic Review of Qualitative Studies Jordan R. Casey,1,2 Camilla S. Hanson, BPsych (Hons),1,2 Wolfgang C. Winkelmayer, MD, ScD,3 Jonathan C. Craig, PhD,1,2 Suetonia Palmer, PhD,4 Giovanni F.M. Strippoli, PhD,1,5,6 and Allison Tong, PhD1,2 Background: Delayed creation of vascular access may be due in part to patient refusal and is associated with adverse outcomes. Concerns about vascular access are prevailing treatment-related stressors for patients on hemodialysis therapy. This study aims to describe patients’ perspectives on vascular access initiation and maintenance in hemodialysis. Study Design: Systematic review and thematic synthesis of qualitative studies. Setting & Population: Patients with chronic kidney disease who express opinions about vascular access for hemodialysis. Search Strategy & Sources: MEDLINE, EMBASE, PsycINFO, CINAHL, reference lists, and PhD dissertations were searched to October 2013. Analytical Approach: Thematic synthesis was used to analyze the findings. Results: From 46 studies involving 1,034 patients, we identified 6 themes: heightened vulnerability (bodily intrusion, fear of cannulation, threat of complications and failure, unpreparedness, dependence on a lifeline, and wary of unfamiliar providers), disfigurement (preserving normal appearance, visual reminder of disease, and avoiding stigma), mechanization of the body (bonded to a machine, internal abnormality, and constant maintenance), impinging on way of life (physical incapacitation, instigating family tension, wasting time, and added expense), self-preservation and ownership (task-focused control, advocating for protection, and acceptance), and confronting decisions and consequences (imminence of dialysis therapy and existential thoughts). Limitations: Non-English articles were excluded. Conclusions: Vascular access is more than a surgical intervention. Initiation of vascular access signifies kidney failure and imminent dialysis, which is emotionally confronting. Patients strive to preserve their vascular access for survival, but at the same time describe it as an agonizing reminder of their body’s failings and “abnormality” of being amalgamated with a machine disrupting their identity and lifestyle. Timely education and counseling about vascular access and building patients’ trust in health care providers may improve the quality of dialysis and lead to better outcomes for patients with chronic kidney disease requiring hemodialysis. Am J Kidney Dis. 64(6):937-953. ª 2014 by the National Kidney Foundation, Inc. INDEX WORDS: Patient perspectives; patient-centered care; illness experiences; vascular access; Fistula First; hemodialysis; renal replacement therapy (RRT); predialysis care; chronic kidney disease; qualitative research; thematic synthesis.

A

lthough hemodialysis prolongs life for patients with end-stage kidney disease, complications of vascular access contribute to 15%-20% of hospitalizations in patients on hemodialysis therapy and are associated with increased morbidity and mortality.1,2 Late referral and delayed creation of vascular access may be due in part to patient refusal and fears of dialysis and also are associated with increased risk of

complications.3,4 Concerns about vascular access, including cannulation, bleeding, infection, access failure, and staff inexperience, are prevailing treatmentrelated stressors for patients on hemodialysis therapy.5,6 Arteriovenous fistulas (AVFs) are associated with better clinical outcomes and quality of life and lower costs compared with arteriovenous grafts (AVGs) and

From the 1Sydney School of Public Health, The University of Sydney; 2Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead, Sydney, NSW, Australia; 3Division of Nephrology, Stanford University, Palo Alto, CA; 4University of Otago Christchurch, Christchurch, New Zealand; 5Medical Scientific Office, Diaverum, Lund, Sweden; and 6Department of Emergency and Organ Transplantation, University of Bari, Bari, Italy. Received March 18, 2014. Accepted in revised form June 12, 2014. Originally published online August 9, 2014. Because an author of this article is an editor for AJKD, the peer-review and decision-making processes were handled entirely

by an Associate Editor (Dorry L. Segev, MD, PhD) who served as Acting Editor-in-Chief. Details of the journal’s procedures for potential editor conflicts are given in the Information for Authors & Editorial Policies. Address correspondence to Allison Tong, PhD, Centre for Kidney Research, The Children’s Hospital at Westmead, Westmead NSW 2145, Sydney, Australia. E-mail: allison.tong@sydney. edu.au  2014 by the National Kidney Foundation, Inc. 0272-6386/$36.00 http://dx.doi.org/10.1053/j.ajkd.2014.06.024

Am J Kidney Dis. 2014;64(6):937-953

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Casey et al

central venous catheters (CVCs). However, in the United States, 30% of eligible patients refuse AVF creation, and the reasons for this are not well understood.7-11 Since implementation of the Fistula First Breakthrough Initiative, CVC use has decreased from w27% in 2002 to ,20% in 2013.12,13 However, concern remains about the use of CVCs,14,15 which have the highest risk of infections and are associated with cardiovascular events and death. The NKF-KDOQI (National Kidney Foundation– Kidney Disease Outcomes Quality Initiative) guidelines for vascular access suggest that all patients with chronic kidney disease (CKD) stage 4 be educated about all modalities of renal replacement therapy to ensure timely referral for the placement of a dialysis access.16 Informed shared decision making and patientcentered care require an understanding of patients’ values, concerns, and goals,17-19 which can be gained through qualitative research.20,21 Qualitative research can provide data about patients’ values, beliefs, motivations, and priorities for the purpose of explaining social and experiential phenomena.22 The data usually are produced through interviews and focus groups. A systematic review of multiple primary qualitative studies can synthesize data for patients’ beliefs, attitudes, and perspectives from different populations and contexts; enable comparisons; and generate higher order themes for a broader understanding of the range of patients’ perspectives on the given topic.23 The current data for the personal, lifestyle, and social impact of vascular access from patients’ perspectives are intermittent, and differences in concerns and attitudes among specific patient populations and in differing clinical contexts toward the various types of vascular access are not well known. This study aims to describe the perspectives of patients on vascular access initiation and maintenance and inform strategies to maximize quality-of-care and quality-of-life outcomes among patients on hemodialysis therapy.

METHODS We followed the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) framework.23

Selection Criteria Qualitative studies that explored the expectations or experiences of adults aged 18 years or older, in any stage of CKD, and using any type of vascular access (AVF, AVG, or CVC) were eligible.

Data Sources and Searches The search strategy is provided in Table S1 (provided as online supplementary material). The searches were in MEDLINE, EMBASE, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL) from inception to October 11, 2013. Reference lists of relevant articles, Google Scholar, and PubMed also were searched. We also conducted searches in ProQuest Dissertations and Theses Database, British Library Electronic Theses Online Service (EThOS), and the DART-Europe E-theses Portal for doctoral dissertations. Two of the authors 938

(J.R.C. and A.T.) screened search results and excluded those that did not meet the inclusion criteria. Full texts of potentially relevant studies were assessed for eligibility.

Data Extraction and Quality Assessment We assessed the comprehensiveness of reporting of each primary study with items adapted from the Consolidated Criteria for Reporting Qualitative Research (COREQ) framework, which included criteria specific to the research team, study methods, study setting, analysis, and interpretations.24 Two reviewers (J.R.C. and C.S.H.) independently assessed each study, and discrepancies were resolved through discussion.

Data Analysis Based on thematic synthesis methods,21 all text and participant quotations under the “results/findings” or “conclusion/discussion” section of each article were imported into qualitative data management software (HyperRESEARCH, version 3.0.3, 2009; ResearchWare Inc). J.R.C. performed line-by-line coding of the findings of the primary studies, conceptualized the data, and inductively identified concepts relating to patient’s perspectives on vascular access. For subsequent articles, the text was coded into existing concepts or a new concept was created when needed. Similar concepts were grouped into themes and subthemes. J.R.C. identified conceptual links among themes to develop an analytical thematic schema. Two reviewers (C.S.H. and A.T.) also read the articles independently to check that all data were included in the interpretation, preliminary analysis, and analytical framework and discussed the addition or revision of themes with the first reviewer (J.R.C.). These were integrated into the final analysis. This form of investigator triangulation can ensure that all themes and the analytical framework capture and reflect the full breadth of data.

RESULTS Literature Search Our search yielded 401 articles. Of these, 46 articles were included (Fig 1). One study did not report the number of patients. The other 45 articles involved 1,034 patients (761 were receiving hemodialysis; 67, peritoneal dialysis; 42, non–dialysis dependent; and 164, dialysis modality not specified; Table 1). Comprehensiveness of Reporting The completeness of reporting was variable, with studies reporting 5-23 of the 24 items possible (Table 2). The participant selection strategy was described in 39 (85%) studies. Theoretical saturation (defined as when little or no new relevant concepts were arising from subsequent data collection) was reported in 19 (41%) studies. Member checking (obtaining feedback from participants on the preliminary findings) was reported in 16 (35%) studies, whereas researcher triangulation in data analysis was reported in 20 (43%) studies. Synthesis We identified 6 themes: heightened vulnerability, disfigurement, mechanization of the body, impinging on way of life, self-preservation and ownership, and confronting decisions and consequences. Selected quotations to illustrate each theme are provided in Am J Kidney Dis. 2014;64(6):937-953

Patients’ Perspectives on Vascular Access

MEDLINE 124 citations

Embase 154 citations

PsycINFO 25 citations

CINAHL 25 citations

PhD 42 citations

Other sources

31 citations

Title and abstract review Total excluded: 307

Citations 401

Duplicate article 106 Epidemiological studies (systematic reviews, clinical trials, cohort studies, 92 case control study, diagnostic studies, case series, case report) Non-primary research (editorials, commentaries, model of care, letter, 63 news article, review, ethical discussion) Excluded study population (<18yrs, healthcare providers, community) 29 Quantitative Survey study 9 Guidelines or consensus statements 7 Basic science 1

Full text analysis Total excluded: 48

Citations 94

No concepts relating to vascular access Quantitative (QOL, survey) studies Excluded population Non-primary research Non-English

21 9 8 7 3

Included in systematic review 46 studies n ≥ 1034 participants

Figure 1. Search results. Abbreviation: QOL, quality of life. Throughout the body of this article, reference numbers have been placed WITHIN quotation marks. I have highlighted the first instance of this (see below) but this happens throughout. In each case, please move the reference numbers OUTSIDE of the quotation mark. Although AMA style guide doesn’t specifically state a rule about this, it is clear by looking at the second sentence of the first bullet on page 63 of the style guide that reference citations should go outside the closing quotation mark.

Table 3. The conceptual links among themes are presented in Fig 2. Disfigurement, heightened vulnerability, and mechanization of the body contributed to participants’ sense of disrupted identity. The intrusiveness of vascular access was perceived as an abnormality in their bodies. Patients experienced emotional vulnerability due to the invasiveness of vascular access and risk of complications, which had debilitating social consequences, but also prompted them to devise strategies to cope with maintaining and accepting vascular access. The ability to negotiate social consequences and coping influenced the ways that participants confronted treatment decisions and how they considered the value of life. Heightened Vulnerability Dependence on a lifeline. Patients were conscious of their dependence on vascular access as a precarious lifeline. Because vascular access was crucial for dialysis to work successfully, it was described as the “Achilles’ heel of the process.”25,26 Some patients felt that they became very attentive toward and protective of their “second life.”27 Fear of cannulation. Some patients experienced debilitating anxiety about cannulation: “In the beginning Am J Kidney Dis. 2014;64(6):937-953

I could not sleep the night before.”28 Patients dreaded the pain and the size of the needles. They also were frightened by the potential for complications that could lengthen their time on dialysis or prevent successful dialysis. Some relied on others to do the needling because they felt unable to do it on their own. For some patients, the dread of cannulation was a deterrent to choosing hemodialysis, or for patients who already initiated hemodialysis therapy, it led to refusal to attend dialysis sessions and/or undergo permanent access creation. Wary of unfamiliar providers. A major concern for some patients was the experience and expertise of health professionals. Patients doubted the ability of nurses who were unfamiliar to them, particularly their skill with cannulation. Patients who had their accesses cannulated by familiar and trusted providers felt more secure: “It gives you more confidence, makes you feel more relaxed.”29 Unpreparedness. Some patients felt emotionally unprepared for vascular access and poorly informed about it. Some were unaware of the need for vascular access to dialyze and were shocked when they realized how the fistula would be used, for example, that it would need to be cannulated. Some did not expect 939

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Table 1. Characteristics of Included Studies

Population (n)

Age range (y)

Sex (M:F)

Country

Study

Na

Beanlands38 (2001)

47

HD, PD, NDD

18-70

33:14

CA

Mixed methods

Face-to-face interviews

Inductive and deductive

Engulfment among adults with CKD

Bevan29 (2007)

25

HD

25-84

21:4

UK

Phenomenology

Phenomenological analysis

Experience of dialysis

Bordelon42 (1997)

20

HD

—

9:11

US

Case-study

Face-to-face semistructured interviews, observations Semi-structured interviews

Comparative analysis

Empowerment

Breckenridge36 (1997b)

22

HD (16), PD (6)

29-69

13:9

US

Grounded theory

Semi-structured in-depth interviews

Constant comparative analysis

Choice of dialysis treatment

Breckenridge35 (1995b)

22

HD (16), PD (6)

29-69

13:9

US

Grounded theory

Semi-structured in-depth interviews

Constant comparative analysis

Choice of dialysis treatment

Buck30 (2009)

20

HD, PD, Tx

—

13:7

UK

Mixed methods

Face-to-face semistructured interviews

Constant comparative analysis

Barriers to elective start of RRT

Cafazzo43 (2007b)

20

HD (13), NDD (7)

22-70

16:4

CA

Ethnography

Face-to-face in-depth interviews, focus groups

Inductive

Validation, design and evaluation of an intervention for nocturnal HD

Cafazzo72 (2009b)

20

—

Calvey73 (2011)

7

Methodology

Data Collection

Analysis

Topic

Ethnography

Ethnographic interviews

Inductive

Barriers to nocturnal home HD

29-60

— —

CA

HD

IE

Phenomenology

20-73

11:19

TW

Grounded theory

Phenomenological analysis (7-step framework) Constant comparative analysis

Life on HD

HD (12), PD (18)

Face-to-face in-depth/ semi-structured interviews Face-to-face semistructured interviews

HD (13), NDD (7)

30

Cohen74 (1995)

5

HD

.20

2:3

US

Qualitative

Face-to-face unstructured interviews

—

Impact of living on HD for .20 years

Costello75 (1999)

7

HD

45-78

7:0

US

Mixed methods

Focus groups

Thematic analysis

Relationship between meaning of illness and depression and treatment adherence

Curren76 (1997)

30

HD

27-76

18:12

US

Qualitative

Semi-structured interviews

Narrative analysis

Problem solving and coping strategies in well-functioning HD patients

Curtin77 (2002)

18

HD, PD

38-63

10:8

US

Descriptive

Face-to-face semistructured interviews

Content analysis

Experience of long-term dialysis survivors

Ekelund46 (2010)

39

HD (22), PD (17)

26-84

30:9

SE

Qualitative

Face-to-face/telephone semi-structured interviews

Discursive approach

Life on dialysis

(Continued)

Decision making and adaption to dialysis

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Chen27 (2007)

Study

N

Population (n)

a

Age range (y)

Sex (M:F)

Country

Methodology

Fatani78 (2008)

50

HD

24-59

0:50

SA

Mixed methods

Feild37 (1996)

16

HD, PD, Tx, NDD

28-76

9:7

US

Grounded theory

Fetherstonhaugh45 (2007)

10

HD (7), PD (3)

$65

13:8

AU

Ford-Anderson79 (2010)

22

HD

18-91

10:12

Gibson80 (1995)

20

HD

34-80

4

HD

Gordon32 (2001)

79

Hagren81 (2001) Hagren82 (2005)

Giles34 (2004)

Herlin28 (2008)

Data Collection

Analysis

Topic

Face-to-face, in-depth interviews Face-to-face semistructured interviews

Grounded theory analysis Grounded theory analysis

Impact of ESKD

Longitudinal qualitative

Face-to-face semistructured in-depth interviews and questionnaires

Thematic analysis

Dialysis decision making among older people

US

Mixed methods

Open-ended interviews

Content analysis

Impact of demographics, social support, health beliefs on adherence to HD treatment regimen

11:9

US

Mixed methods

Face-to-face minimally structured, open-ended interviews

Content analysis

Perceived quality of life

—

3:1

CA

Phenomenology

Face-to-face semistructured interviews

Phenomenological analysis

Life-world of home HD

HD

19-73

39:40

US

Qualitative

Face-to-face semistructured interview

Content and statistical Treatment decision making and analysis access to Tx

15

HD . 3 mo

50-86

7:8

SE

Interpretative qualitative

Face-to-face semistructured interviews

Content analysis

Experience of suffering from ESKD

41

HD . 3 mo

29-86

26:15

SE

Qualitative

Face-to-face semistructured interviews

Content analysis

Experience of life on HD

HD

30-44

5:4

SE

Phenomenology

Face-to-face interviews

Phenomenological analysis

HD treatment

9

Decision making regarding treatment for ESKD

941

Hughes83 (2009)

18

NDD

26-80

7:11

UK

Qualitative

Telephone semistructured interviews

Thematic analysis

Peer support

Humphreys84 (2001)

10

HD

39-64

5:5

US

Grounded theory

Face-to-face semistructured interviews

Grounded theory analysis

African American’s experiences with Tx evaluation

Ivie85 (2006)

63

HD

24-91

32:31

US

Interviews

Thematic analysis

Kierans40 (2001)

—

ESKD

—

—

IE

Narrative methodology Narrative methodology

Face-to-face semistructured interviews, participant observation

—

Developing resources for social work services in dialysis setting Illness process

Lai53 (2012)

13

HD

39-63

7:6

SG

Face-to-face semistructured interviews

Interpretive phenomenological analysis

Phenomenology

(Continued)

Experience of incident HD patients

Patients’ Perspectives on Vascular Access

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Table 1 (Cont’d). Characteristics of Included Studies

942 Table 1 (Cont’d). Characteristics of Included Studies

Study

N

Population (n)

a

Age range (y)

Sex (M:F)

Country

Methodology

Data Collection

Analysis

Topic

Morton86 (2011)

17

HD (6), PD (3), NND (8)

40-81

11:6

AU

Mixed methods

Focus groups

Thematic analysis

Piyasut39 (2010)

30

HD

26-75

15:15

TH

Grounded theory

Face-to-face in-depth interviews

Constant, comparative Experiences of ESKD analysis

6

HD

20s-60s

6:0

NZ

Critical interpretivism

Face-to-face semistructured interview Interview

Thematic analysis

Polaschek87 (2003)

Concerns of patients in renal setting Experience of dialysis patient

1

HD

60

1:0

CA

—

Richard26 (2010b)

14

HD

23-87

7:7

US

Ethnography

Face-to-face in-depth/ semi-structured interviews

Data reduction and iteration

Living with AVF

Richard25 (2008b)

14

HD

23-87

1:1

US

Ethnography

Face-to-face in-depth, semi-structured Interviews

Data reduction and iteration

Living with AVF

Russ88 (2005)

43

HD

70-93

17:26

US

Ethnography

Face-to-face semistructured interviews

—

Life on dialysis

Schaumberg89 (1993)

20

HD

40s-70s

7:8

US

Ethnography

Face-to-face semistructured interviews

Constant, comparative Subjective quality of life analysis

Shih90 (2011)

7

HD

46-77

3:4

NZ

Interpretive

Face-to-face semistructured interviews

Hermeneutical analysis

Impact of dialysis on rural Maori patients and family

Tijerina41 (2000)

30

HD

30-56

0:30

US

Qualitative

Face-to-face semistructured in-depth interviews

Template analysis

Psychosocial influences on adherence to treatment recommendations in MexicanAmerican patients

Tong31 (2008)

63

HD, PD, Tx, NDD

18-80

30:33

AU

Qualitative

Focus groups

Thematic analysis

Research priorities in CKD

NND

29-69

5:4

UK

Interpretive phenomenology

Face-to-face semistructured interviews

Constant comparative analysis

RRT choices

Quinan44 (2008)

9

Welch6 (1999)

86

HD

20-82

41:45

US

Mixed methods

Structured interview with 1 open-ended question

—

Treatment-related stressors

Wells91 (2009)

15

HD (12), PD (3)

21-80

8:7

US

Qualitative

Face-to-face/telephone semi-structured interviews, observations

Content analysis

Occupational performance of Mexican-Americans on dialysis

(Continued)

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Tweed51 (2005)

—

Characteristics of dialysis important to patients and caregivers

Phenomenology CA 7:6

— HD 13 Xi10 (2011)

Abbreviations and definitions: (—), not stated; AU, Australia; AVF, arteriovenous fistula; AVG, arteriovenous graft; CA, Canada; CKD, chronic kidney disease; content analysis, deductive methodology that involves identification of codes prior to searching for their occurrence in the data; critical interpretivism, an approach that looks for culturally derived and historically situated interpretations of the social world and stresses the reflective assessment and critique of society and culture; CVC, central venous catheter; ESKD, end-stage kidney disease; ethnography, to discover and describe individual social and cultural groups; thematic analysis, concepts and theories are inductively derived from the data; GFR, glomerular filtration rate; grounded theory, to develop theory that is grounded in the data collected; HD, hemodialysis; IE, Ireland; mixed methods, include quantitative and qualitative methods; NDD, non–dialysis dependent; NVA, no vascular access; NZ, New Zealand; PD, peritoneal dialysis; phenomenology, to study peoples’ understanding and interpretations of their experiences in their own terms and emphasizing these as explanations for their actions; RRT, renal replacement therapy; SA, Saudi Arabia; SE, Sweden; SG, Singapore; TH, Thailand; thematic analysis, concepts and theories are inductively derived from the data; TW, Taiwan, Province of China; Tx, transplant; UK, United Kingdom; US, United States. a Patients included in qualitative component only. b The same participants were enrolled in Breckenridge 1995 and Breckenridge 1997, Calfazzo 2007 and Calfazzo 2009, and Richard 2008 and Richard 2010.

Factors influencing dialysis modality selection Attitudes, beliefs, values of patients who refused creation or use of an AVF Face-to-face unstructured Constant comparative interviews analysis Face-to-face semiThematic analysis structured interviews Grounded theory US 13:7 20-81 20 Whittaker33 (1996)

HD (10), PD (10)

Data Collection Methodology Country Sex (M:F) N

a

Study

Population (n)

Age range (y)

Table 1 (Cont’d). Characteristics of Included Studies

Analysis

Topic

Patients’ Perspectives on Vascular Access

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any complications, which added to their insecurity. They believed that if they had been informed about potential complications “it would have been better.At least I’d know what I was going to go through.”30 Some patients indicated that they learned a lot about vascular access from a peer supporter who showed them his or her vascular access site. Those who felt prepared for vascular access approached dialysis with more confidence. Threat of complication and failure. Patients experienced ongoing and overwhelming problems with their vascular accesses that caused anguish and “heartache.”31 Patients with grafts and fistulas dreaded clotting, infiltration, and stenosis, whereas those with catheters feared infection. Patients described an unrelenting fear and anticipation of devastating consequences if the vascular access failed. Bodily intrusion. Some patients believed the insertion of vascular access and needles was an agonizing invasion of their body. They dreaded being “cut on”25,26,32,33 (having surgeries) and felt defenseless when left “all cut and bruised.”29 Some experienced a loss of autonomy, particularly if they believed they did not consent to the creation of the access. Some patients expressed a sense of bodily assault, especially when referring to the procedure of cannulation: “they come in there and punch you like you’d punch a tire.”33 Other patients likened cannulation to being “stabbed”25 or “ripped.”34 Disfigurement Preserving normal appearance. Patients were concerned with maintaining a normal appearance and strived to avoid visible body disfigurement. This underpinned refusal of hemodialysis or AVF creation. Patients expressed revulsion when confronted with the sight of a swollen or protruding fistula: “There was a man with two huge lumps on his arms, I thought ‘Oh that’s revolting.’”30 Some patients were disturbed by the permanency of these physical changes because they were “scarred for life.”35,36 Consequently, patients wanted to avoid having fistulas placed on exposed parts of their limbs and covered themselves by wearing long sleeves. Some patients also were concerned by the appearance of the catheter; “now I’ve got to walk around like Frankenstein.”37 Avoiding stigma. Patients were concerned about the perceptions of others and believed that the appearance of their vascular access attracted unwanted attention: “I felt that I was an animal in the zoo.”27 Visible puncture wounds made some believe that they would be misjudged and some were selfconscious and thought that they were being inspected when in public. Some patients thought that this affected their sense of belonging because it made them feel like “an outcast.”38 943

Casey et al Table 2. Comprehensiveness of Reporting in Included Studies

Item

Personal characteristics Interviewer/facilitator identified Occupation of interviewer or facilitator Experience or training in qualitative research Relationship with participants Relationship established prior to study commencement Participant selection Selection strategy (eg, snowball, purposive, convenience, comprehensive) Method of approach or recruitment Sample size No. and/or reasons for nonparticipation Setting Venue of data collection Presence of nonparticipants (eg, clinical staff) Description of sample Data collection Questions, prompts, or topic guide Repeat interviews/observations Audio/visual recording Field notes Duration of data collection (interview or focus group) Protocol for data preparation and transcription Data (or theoretical) saturation Data analysis Researcher/expert triangulation (multiple researchers involved in coding and analysis) Derivation of themes or findings (eg, inductive, constant comparison) Use of software (eg, NVivo, HyperRESEARCH, Atlas.ti) Member checking (participant feedback on findings) Reporting Participant quotations or raw data provided (picture, diary entries) Range and depth of insight into participant perspectives on vascular access ($25% themes)

Visual reminder of disease. For some, the vascular access was a prevailing symbol of their illness. For instance, referring to a vascular access lesion, one remarked “the only thing that reminded me about my sickness was my arm.”39 Some believed that the fistula branded them as a patient and emphasized their disease state to those around them. For some, the fistula “opens up a story, a road I don’t want to go down,”40 forcing them to relive and explain their struggle with CKD. 944

Studies Reporting Each Item

No. of Studies (%)

10, 25-35, 37-46, 51, 72-76, 78-91 6, 10, 25, 26, 28-30, 33-35, 37, 39, 41-45, 51, 53, 79, 80, 83-85, 87-91 25, 29, 34, 39, 45, 53, 76, 77, 86, 88, 89, 91

42 (91) 28 (61) 12 (26)

10, 29, 31, 37, 39, 42, 44, 45, 76, 78, 89

11 (24)

6, 25-39, 41-43, 45, 46, 53, 72-80, 83-87, 89-91

39 (85)

6, 10, 25-32, 34-39, 41-43, 45, 46, 51, 53, 74-87, 89-91 6, 10, 25-39, 41-46, 51, 53, 72-91 6, 27, 29, 31-33, 37, 41, 45, 46, 74, 75, 79, 82, 83, 85, 86, 89-91

38 (83) 45 (98) 19 (41)

6, 25-28, 30-43, 45, 46, 51, 72-76, 78-82, 84-91 25, 28-31, 35-37, 39, 45, 46, 51, 73-75, 78, 80-82, 86, 90 6, 10, 25-39, 41-46, 51, 53, 72-81, 83-87, 89-91

39 (85) 21 (46)

6, 25-33, 35, 37-39, 41-46, 51, 53, 72-87, 91 6, 25, 27, 32, 34, 35, 37, 39, 42, 45, 46, 74, 75, 78, 80, 84, 85, 87, 89, 91 10, 25-35, 37, 39, 41-43, 45, 46, 51, 53, 72-75, 77-84, 86, 87, 89-91 10, 25-27, 29-32, 34, 35, 37-39, 41, 42, 45, 74, 76, 78, 80, 84-87, 89, 91 6, 10, 25-28, 31-41, 45, 46, 51, 53, 73-78, 80-87, 89, 91 10, 25-35, 37-39, 41-43, 45, 46, 51, 53, 72-78, 81-84, 86, 87, 89-91 10, 25-28, 35-37, 39, 43, 45, 46, 53, 72-74, 77, 80, 84, 86, 89, 91

39 (85) 21 (46)

10, 25-27, 30, 31, 37-39, 45, 46, 51, 53, 73, 75-77, 80, 83, 84, 89, 90 10, 25-27, 29-39, 41-43, 45, 46, 51, 53, 72, 73, 75-87, 89-91 27, 29-32, 35-39, 41, 43, 45, 72, 78-80, 83-86, 91 25, 26, 30, 31, 35-38, 41, 42, 45, 73, 75, 77, 80, 84, 87, 89, 90

20 (43)

43 (93)

38 (83) 24 (52) 36 (78) 38 (83) 19 (41)

40 (87) 21 (46) 16 (35)

10, 25-46, 51, 53, 72-91

45 (98)

10, 25-28, 32-35, 37-43, 45, 53, 75, 76, 82, 83, 91

23 (50)

Mechanization of the Body Bonded to a machine. The access was viewed as the physical and psychological connection to the dialysis machine: “I saw my fistula as a link with everything; as a link to dialysis.”40 Some patients thought that vascular access blurred the lines between the dialysis machine and their body: “that thing going into my arm all the time—havin’ to be shut off at a certain time, like a machine.”37 Patients described the Am J Kidney Dis. 2014;64(6):937-953

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Table 3. Illustrative Quotations Themes

Quotations

Contributing Studies

Heightened Vulnerability Dependence on a lifeline

“The fistula is like my second life. I take care of it carefully.” 27 “I saw my fistula as a link with everything; as a link to dialysis. I was now dependent on this external thing [dialysis machine].”40 “It’s not something they have down to a fine art.” 31

25-27, 31, 35-37, 40, 41, 45, 75, 87, 89

Fear of cannulation

“It’s just the idea of being able to take that big needle going into your arm. That’s the bad part of it.” 37 “I always dread being stuck. It hurts most of the time.” 80 “They have to go to the same spot and you just have to stand the pain.” 91

10, 25-28, 33, 37, 41, 43, 45, 53, 72, 75, 80, 85, 91

Wary of unfamiliar providers

“But I have had nurses, their hands are shaking and they’re trying to put needles in my arm and.sometimes they did not succeed.” 43 “You know sometimes, you know, they have somebody in there and they’ll mess up my arm. They’ll miss the vein and have to pull the needle out.” 75 “If I know that it’s going to be someone who isn’t good at it [cannulation], then, naturally I’ll get all tense and wonder how it’s going to end.” 81 “I’m afraid that if I go elsewhere to receive treatment and they won’t be able to stick me properly.” 41 “Respondents were also very outspoken about the limited expertise and experience of new personnel performing venipuncture and stated they often felt like a ‘dummy’ used for practice. They frequently attributed infiltrated needles to the inexperience of the dialysis staff.”6

6, 10, 25-29, 32-34, 41-45, 75, 76, 80-82, 85

Unpreparedness

“I didn’t know anything about the catheter and when I got the fistula, I needed to learn about it.” 42 “I didn’t even know what a line was until I had to put one in which was then a shock again.” 30 “Respondents also mentioned being shown a catheter, fistula or operation scar, and those who had seen their peer supporter on hemodialysis talked enthusiastically about how much they had learned.”83 “She [doctor] never told me about this [indicating fistula].”41

10, 25-27, 30, 34, 37, 42, 45, 75, 77, 83, 90

Threat of complication and failure

“It came out of my chest. I got blood poisoning from it so they took that one out and put one in my groin.” 29 “Sometimes I get another fistula, and before I get well it [a blood clot] would break loose, and they would have to operate on it [the fistula]. I lost a lot of blood.” 35,36 “Oh yes, a few times. I had to get a balloon blown up in the fistula.” 79 “My biggest fear is the clogging.” 25,26 “Most of the people that have been here have passed on because they keep fooling around with.putting [the fistula] in your arm, then they take it out.” 10

6, 10, 25-31, 33-37, 39, 41-43, 45, 46, 53, 72, 74-77, 79, 83, 85, 86, 89, 91

Bodily Intrusion

“And if they mess it up real bad and start infiltrating the arm, it gets bruised up.” 75 “They put a subclavian catheter in my shoulder, which was an experience in and of itself. And I couldn’t believe the pain of that.” 37 “His modality decision was also strongly influenced by the fact that he already had a fistula placed and did not want to ‘go through another surgery.’” 33 “Subjects reported pain during venipuncture and pain in their access arm between dialysis treatments.” 6 “The fistula is the one that you have in your hand you see? And it makes your hand stiff and uncomfortable.” 86 “Woke up [from surgery] and he [doctor] was like, you graft is up here now, I went WHAT, I was very, very upset, you didn’t even talk to me about that possibility.” 25

6, 10, 25, 26, 29, 32-34, 37, 39, 41, 45, 75, 83, 86, 90

(Continued)

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Quotations

Contributing Studies

Disfigurement Preserving normal appearance

“I always try to hide the bruises on my arms by wearing long sleeves. I even try to look healthy by wearing powered blush on my face.” 78 “I saw a lot of big bumps on his hands. I said, ‘No, I don’t want this to happen to me at all’. I got really scared.” 83 “I remember looking at my clear skin, and thinking that this was the last time I’d have clear skin like that.” 40 “I was afraid he was going to want to come down here [lower arm]. I didn’t want it down here, you see it everywhere. See up here your shirt covers all of this, but just think of this, think of all of this down in this part of your arm, where you either have to wear a long sleeve shirt all the time, or it keeps it exposed. .Appearance.it’s VERY [shouted] important” 25,26 “When she rolled the sleeves up on her blouse [to show fistula] I won’t say I couldn’t believe what I saw, that’s not true. It was almost like watching a horror film.” 51

25-27, 30, 32, 33, 35-37, 40, 41, 45, 53, 73, 78, 83, 91

Avoiding stigma

“I saw] some people [on hemodialysis] and their arms were a mess.I didn’t want hemo because I use my arm in my career.” 37 “When they [people] see my fistula they go, ‘What’s that?’” 91 “How do you expect me to go out in the public? I hide myself.” 53 “People look at me like I’m a drug addict because I have so much tracks on my arm.”37

25-27, 37-39, 41, 53, 78, 91

Visual reminder of disease

“My mother said that having a fistula in my arm would show that I was a patient.” 27 “I didn’t want to see it every time I raised my arm, because other than that, I forget about it.” 25,26 “I don’t want to be a young person walking around with different scars on different limbs.” 41 “People who knew me asked about the fistula.which made me feel that I was a patient.” 27

25-27, 32, 38-41, 76

Bonded to a machine

“Having a fistula in my arm and that thing hooked up.” 38 “In this way, ‘machine’ and ‘body’ become an interwoven unit.”82 “It [the fistula] is a ‘connection’ to the machine and a disconnection from a familiar world of activity.”40

33, 34, 37, 38, 40, 45, 82, 91

Internal abnormality

“[Dr S.] wanted to put a graft, one of those plastic things in my arm.He wanted to put it in. I don’t like anything foreign.” 35 “My body, this part of my body has become a medical junkyard.” 34 “I could hear the gushing. I did not anticipate it would be so bad.” 40

10, 25, 26, 34, 35, 37, 40, 41, 45, 73

Constant maintenance

“I am constantly very conscious of doing things that won’t clot my graft.” 42 “But when you’re starting dialysis and cranking up your pump speed you’re watching these to see if you might have a blow.” 34 “If you feel nothing, then everything is all right.it is the fact that you don’t feel anything that you have to keep inspecting it [vascular access] regularly to make sure everything is all right.” 25,26

10, 25-27, 37, 39, 41, 42, 46, 87

Mechanization of the Body

Physical incapacitation

Impinging on Way of Life “I think I clotted my graft last week from cleaning my garage and lifter planters.” 42 “I couldn’t do the cannulation. The fistula is in my left hand. I’m left handed.” 43 “If you have this shunt in your arm, it appears to me that you would be restricted physically to a degree. I very much enjoy exercise. I wondered if that would make a difference. So I’m concerned.” 37 “And I got me some weights.Yeah, some free weights, but that was a problem because I wasn’t thinking at the time and I got too much weights [for the arm with the dialysis fistula].” 84 “It would make my quality of life a little better using a fistula rather than the catheter. .I’d be able to shower and be able to go swimming.”10

10, 25-27, 37, 40-43, 45, 78, 82, 84, 91

(Continued)

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Patients’ Perspectives on Vascular Access Table 3 (Cont’d). Illustrative Quotations Themes

Quotations

Contributing Studies

Wasting time

“It is a big hassle to have trouble with your graft.” 42 “Sometimes I get a little angry. It’s hard to get my needle in place and my dialysis takes 4.5 hours.” 82 “After dialysis, sometimes I have to stay longer, you know? Because the bleeding didn’t stop. And sometimes I just come back because of bleeding.” 10

10, 27-29, 32, 37, 41, 42, 75-77, 81, 82, 90

Instigating family tension

“Last time it [graft] clotted my husband and I starting arguing. We never argued before about anything.” 42 “I’m not gonna be able to go home to my parents [because] I’m afraid that if I go elsewhere to receive treatment and they won’t be able to stick me properly.” 41

25, 26, 40-42

Added expense

“I’m sure they didn’t want to put that money into it because you know I can function fine with it in there.” 34 “.It would be a waste of time and money as well.” 41

34, 39, 41

Task-focused control

“I scrub my arm and take care of my graft.” 42 “I exercise my fistula by squeezing a coil instead of clenching a ball. It is really useful.” 27 “I clean it twice a day.whole process takes just under 20 minutes. If I perspire when I teach, I come right home and clean the catheter, so I am pretty meticulous.I have never had an infection.” 25

10, 25-27, 37, 39, 42, 43, 76, 82

Advocating for protection

“Years ago I refused to have a couple of nurses get near me. Maybe it was because of the terrible needle sticks they would inflict on me.” 42 “if I would have went up there and said, ‘Look, my access has failed, you should replace it’, they probably would have.” 75 “But this time I put my foot down. They’re not allowed to take anything from my leg [to make graft], they have listened to that. I didn’t give in on that one.” 81 “The personal chemistry must work for me.otherwise the [nurses] are not allowed to [cannulate] my fistula.” 28 “Before [the nephrologist] told me I could refuse a fistula and stay with a catheter, I felt like you had to do what they told you.” 89

25, 26, 28, 35, 37, 42, 44, 75, 82, 89

Acceptance

“I try not to get too gloomy, because it doesn’t hurt now that they aren’t poking into my arm [referring to having gotten a better access].” 42 “I feel more satisfied with the perm catheter and that really, I’ve been doing fine with it.” 41 “I would rather look at the green grass, than the roots of the grass. .You have to keep your attitude up.” 10 “She said, ‘Oh my god, they put those things [needles] in your arm.I don’t know how you do it.’ I’m like well you gotta do what you gotta do.” 91

10, 37, 38, 41, 42, 45, 91

Self-preservation and Ownership

Imminence of dialysis

Existential thoughts

Confronting Decisions and Consequences “For some then, having an access created signaled a transition from a person with kidney disease to what the subject called a ‘true chronic case.’” 38 “’So’ he said. ‘You’ve got to have dialysis or you’re going to be dead.’ He said, ‘You won’t make your 56th birthday.’ That’s when I decided to put the [hemodialysis vascular access] in my arm.” 37 “Mentally, I found it most distressing. I felt it was the end now. It’s real. It’s happening.” 40 “Initially, I was just rejecting it. I did not want to go for dialysis. I did not want to fix my fistula.” 53 “I did not have the operation at that time because I told myself that I could resist [dialysis].” 27 “The guy next to me clotted his graft and was upset and threatened to leave and drink a bottle of Rye. I told him that.those things happen.” 42 “I was gonna go in and get this graft done and it was like it was kind of overwhelming for me. And I kept thinking, ‘But I don’t want to do this, I don’t want to live like this!’” 41 “If that [the fistula] gives up the ghost I’ll call it a day.” 45 “I’ve considered not going to dialysis, just quit.” 42

10, 27, 30, 33, 36-38, 40, 41, 45, 51, 53, 83, 88

10, 41, 42, 45, 46

Note: Italicized quotations are from patients.

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Disrupted identity Disfigurement • Preserving normal appearance • Avoiding stigma • Visual reminder of disease

Heightened vulnerability • Dependence on a lifeline • Bodily intrusion • Fear of cannulation • Wary of unfamiliar providers • Threat of complications and failure • Unpreparedness

Mechanization of the body • Bonded to a machine • Internal abnormality • Constant maintenance

Confronting decisions and consequences • Imminence of dialysis • Existential thoughts

Impinging on way of life • Physical incapacitation • Wasting time • Added expense • Instigating family tension

Self-preservation and ownership • Task-focused control • Advocating for protection • Acceptance

Social consequences and coping

Figure 2. Thematic schema.

access as a “site,” a place that the machine could be “just plugged in.”33 Internal abnormality. Some patients were concerned that the fistula was abnormal or were disturbed at the thought of having a foreign artifact inside them. Vascular access was “different from what the body started out with” and was analogous to “a fault in the system.”25,26 Patients disembodied the access, referring to it as “the arm thing.”10 The awareness of abnormal sensations from the access was unsettling. Some thought that their bodies became overrun by failed accesses; describing themselves as “a medical junkyard,”34 and were extremely frightened by the idea “that they would run out of places to put ‘em.”41 Constant maintenance. The vulnerability of the vascular access meant that some patients experienced a constant pressure to “keep it working.”39 Patients “become aware of things that can go wrong, and try to do what is right so they won’t go wrong.”42 For some, examining the fistula for malfunction became “just like daily work,”27 whereas for others, cleaning the catheter was a crucial component of ongoing upkeep. The need for maintenance played an important role in modality decisions as patients considered which method would “outlast and outwork”10 the other. Impinging on Way of Life Physical incapacitation. Because the “damn fistula is so vulnerable,”40 patients consciously refrained from activities that could potentially damage it, such as sport and exercise, household chores, and manual 948

labor. Those with catheters were wary of tasks that could lead to infection, such as showering. Some patients could not self-cannulate because the fistula was in the dominant arm. Patients felt debilitated by their physical limitations, which caused some to question their self-worth or social role: “It’s very frustrating when you can’t open up a bottle. You feel so handicapped.”25,26 Wasting time. For patients, time already was a precious commodity, so some resented the additional time taken up by appointments for vascular access creation and assessment. Problems with cannulation and bleeding could extend time spent on dialysis. Prolonged hospitalization due to vascular access complications placed further restrictions on patients’ time. Instigating family tension. Some patients believed that the demands of managing the vascular access caused conflicts in relationships. Some patients projected their frustration about having vascular access onto their family members: “I got so angry with my family when I went home afterwards [from the creation of a fistula].”40 One patient, who was forced to sleep alone to prevent his fistula from clotting, was disheartened by the physical and emotional distance that was created between himself and his spouse.25,26 Complications had the potential to cause marital dissension. Added expense. A few patients mentioned the extra financial burden that vascular access applied. One believed that she had already “spent a lot of money on Am J Kidney Dis. 2014;64(6):937-953

Patients’ Perspectives on Vascular Access

her illness .just for her vascular access.”39 Because many patients were already financially strained by their medical problems, the additional costs of vascular access were frustrating. Self-preservation and Ownership Task-focused control. Patients sought to preserve their access by developing the skills to care for it themselves. Some took on sole medical responsibility and learned to self-cannulate. Others found smaller tasks that they could take control over. These measures not only allowed patients to protect their access, but also increased their sense of personal security: “I have control over what I’m doing. I’m not putting myself in somebody else’s hands.”43 Patients experienced selfsatisfaction and pride when they were able to keep the vascular access working. Advocating for protection. For some patients, an important part of preserving the vascular access was developing the ability to assert themselves. Patients learned to stand up to providers because “it is my body, my graft and you’re not going to mess with me if you aren’t capable of helping me.”42 Some patients would “always tell the nurses where to go”44 during cannulation and others would not allow themselves to be touched if they did not trust the provider. By advocating for themselves, patients defended the access and maintained control over their situation. Acceptance. Some patients believed that they had accepted the appearance and risks of their vascular access and this aided them to “take potential problems in their stride.”45 They did not feel the need to agonize about the future, but rather resigned themselves to the fact that “whatever will be, will be.”37 Some patients with catheters were unwilling to have a graft or fistula created despite understanding the risks because the catheter had been “successful and done the job.”10 Confronting Decisions and Consequences Imminence of dialysis. For some patients, “the fistula was the first realization [of dialysis]”40; they became acutely aware that requirement for dialysis was fast approaching. Some refused to have an access created because they felt unable to cope with the impending dialysis. For some, creation of an access marked the significant transition from being a “kidney patient” to a “true chronic case.”38 They believed that the fistula “was another step towards the machine.”37 Existential thoughts. Some patients felt emotionally drained by vascular access complications such that they began to question “Is there any sense in having to fix so many things in order to go on living?”46 For some, the frustration of maintaining an access became more significant than their desire to continue living. Some used the limited lifespan of their access as a time frame to determine when treatment should Am J Kidney Dis. 2014;64(6):937-953

be withdrawn. One patient recalled the physician emphasizing to him or her that initiating vascular access was a choice of life or death—“you won’t make your 56th birthday.”37

DISCUSSION For patients requiring hemodialysis, creating a vascular access is more than a surgical intervention. Initiation of care measures aimed at establishing a vascular access for hemodialysis signifies kidney failure and imminent dialysis, which is emotionally confronting. Patients are acutely aware that their survival depends on a working vascular access and therefore strive to preserve it. At the same time, they describe it as an agonizing reminder of their body’s failings and “abnormality” of being amalgamated with a machine. Vascular access is not only physically intrusive, but also can disrupt patients’ identity, mental state, and lifestyle. Patients feel particularly vulnerable if unfamiliar staff manage their hemodialysis catheter or cannulate their peripheral vascular access. This heightened sense of vulnerability can have debilitating social consequences because it physically and emotionally restricts how patients live. To cope, patients devise strategies to safeguard their vascular access site, selfadvocate, and enact a proactive stance in their medical responsibilities, which can provide a sense of personal security and control over their body. In the broader literature on the illness experiences in CKD, patients have reported increased vulnerability, impaired body image, and lifestyle restrictions.47-49 Our review highlights how vascular access exacerbates these poor psychosocial and functioning outcomes by inducing self-consciousness, insecurity, and sense of dependence in some patients. Previous studies have found that patients’ treatment preferences are influenced in part by their perception of vascular access.33,50,51 This synthesis shows that some participants viewed the initial creation and ongoing appearance of the access as a prevailing reminder of the need for dialysis; therefore, patients’ ability to accept vascular access may influence their emotional preparedness for treatment with hemodialysis. Vascular access has great significance for patients because it represents the permanency of dialysis. Patients with AVFs and AVGs have reported pain with cannulation as their most common vascular access–related problem, and patients with CVCs have reported lack of needles as the best aspect of their access.52 Our findings draw attention to the emotional impact of cannulation on patients, emphasizing their debilitating fear of needles and pain and unrelenting dread of needling complications. Both patients who were non–dialysis dependent and younger patients on hemodialysis therapy appeared to be more concerned by the physical appearance 949

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of vascular access. Older patients seemed to experience existential thoughts and consider conservative management more than younger patients, particularly when they had complications. Apparent differences across types of access were related primarily to complications. Clotting, infiltration, and stenosis were emphasized with the use of fistulas and grafts, whereas infections were a predominant concern in catheter use. Although CVCs have been associated with poor quality of life,9 a broader range of negative opinions was expressed about fistulas and grafts. Although patients generally were aware that catheters posed increased risk of infections compared with fistulas, the ability to avoid disfigurement and cannulation made it a more appealing choice for some. Patients who selfcannulated believed that they had better control over their pain and had the ability to minimize their risk of complications. They did not want to relinquish control of their care and expressed more distrust in health care providers to cannulate and care for their access. In our review, we conducted a comprehensive search, including PhD dissertation databases, which enabled the synthesis of a broader scope and depth of data on patients’ perspectives. To ensure that the coding and analytical framework captured all data reported in the primary studies, we involved multiple researchers in the analytical process (ie, investigator triangulation). However, this review has some limitations. We excluded non-English articles and most studies were conducted in higher income countries; therefore, transferability of the findings to other populations is uncertain. Minimal comparisons could be made between in-center and home hemodialysis because the data were largely undifferentiated in the primary studies. Only 6 (14%) studies10,25,26,29,45,53 reported the vascular access modality used by patients, so the distribution of AVF, AVG, and CVC use could not be determined. Studies have shown that increased patient knowledge about dialysis has a positive association with AVF use at dialysis therapy initiation and 6 months after initiation.54 It also is recommended that all patients with CKD stage 4 be educated about the different modalities of renal replacement therapy to ensure timely placement of a vascular access.16 Educational interventions also may help resolve the emotional unpreparedness that patients experience with regard to vascular access by addressing patients’ personal concerns about vascular access and its longterm implications. Psychosocial interventions such as cognitive behavioral therapy have been shown to significantly improve depression, quality of life, and treatment adherence in patients with end-stage kidney disease.55,56 Similar interventions (eg, peer support groups) could be used to empower patients in negotiating the physical and emotional impact of vascular 950

access and to manage access-related anxieties and self-esteem issues. Early nephrology referral for patients with CKD is associated with better dialysis preparation and reduces the likelihood that patients will receive a temporary vascular access.4,57 Similarly, timely implementation of educational and psychosocial interventions for vascular access could improve outcomes for patients with CKD and ease the transition to hemodialysis. Cannulation is a key concern for patients on hemodialysis therapy and one of the major reasons for refusing an AVF.6,52,58,59 Our review found that provider experience with cannulation was an important issue for patients on hemodialysis therapy. Previous studies found that hemodialysis nurses believed they were receiving decreasing opportunities to develop and maintain their cannulation skills and that interactions surrounding cannulation created tension between themselves and their patients.60,61 Comprehensive training and regular professional development for hemodialysis nurses is essential to enhance access cannulation proficiency, ensure correct needle insertion, minimize pain, and preserve mature fistulas.62-64 More professional training in vascular access and effective communication skills to build trust with patients appears warranted. Also, we suggest giving opportunities for patients to provide feedback about their care. This potentially could increase patients’ sense of security in the dialysis unit, improve nursepatient interactions, and facilitate shared-care strategies. Some participants in the studies took a proactive role in their medical care. Self-efficacy has been associated with decreased depressive symptoms and better quality-of-life outcomes in patients on hemodialysis therapy.65 Empowering patients to take on task-focused strategies to maintain vascular access may have many advantages because it serves to encourage patients to become active participants in their own self-care, thus reducing feelings of vulnerability and dependence and allowing them to reclaim ownership over their bodies. Since its implementation in 2003, the Fistula First Breakthrough Initiative has been successful at increasing prevalent AVF use. Some have suggested that the emphasis on “fistula first” has drawn focus away from individual patient context and individual patient requirements.14 Also, primary AVF failure rates remain high due to early thrombosis and failure of the fistula to mature, with failure rates of 30% and 70% reported by Schinstock et al64 and Lok,66 respectively. Studies have shown that 24%-42% of all AVFs need an intervention to facilitate maturation and about 20%-30% will not be successful.66 These complications are extremely distressing and frustrating to patients and as a result, prior AVF failure is Am J Kidney Dis. 2014;64(6):937-953

Patients’ Perspectives on Vascular Access

a major factor that leads to patients choosing a CVC as their access type, which they perceive to be more reliable and easier to replace.58,59 We also speculate that patients may perceive dialysis as a temporary solution before transplantation so may prefer a CVC, but further research is needed to address this. Once patients begin dialyzing with an access that they perceive to work well, they are less inclined to consider other options because they do not place as much importance on future risks as they do on present practical use.10 Although grafts are associated with slightly worse outcomes than fistulas in some studies, they are considered significantly superior to catheters and are an acceptable alternative to AVFs for some patients.14,15 The faster maturation rate of AVGs makes it easier to avoid CVCs altogether. Continuous review of fistula eligibility criteria may help avoid placing AVFs in unsuitable candidates, which could subject them to devastating setbacks and lead to catheter use. Moreover, a recent study suggests that elderly patients with CKD could be referred to a nephrologist later to minimize the risk of creating an AVF that may not be used.67 Multidisciplinary services are recommended during preparation for hemodialysis, with specific strategies to resolve patients’ concerns about the creation of vascular access and fears of initiating hemodialysis therapy. Of note, there are successful models of integrated health care in Western Europe, Japan, Australia, and New Zealand, which have overcome such patient barriers to achieve better incident AVF rates. The key to the success of these models is the integration of CKD and end-stage kidney disease care,68 which does not yet exist in the predominant fee-for-service sector in the United States. Greater financial reimbursement is provided to health care providers caring for patients on dialysis therapy compared with CKD care,69 and inadequate predialysis care may contribute to overuse of CVCs in incident hemodialysis patients.69,70 However, there has been a recent focus on developing integrated delivery and coordination of renal care connected with provider performance and quality outcomes measures.71 Also, patients require reassurance and support to cope with the range of physical and psychosocial consequences of vascular access during maintenance hemodialysis. This potentially could alleviate the burden of treatment associated with hemodialysis, improve quality of dialysis and treatment satisfaction, and ultimately lead to better outcomes for patients with CKD requiring hemodialysis.

ACKNOWLEDGEMENTS Support: Dr Tong is supported by a National Health and Medical Research Council Fellowship (ID no. 1037162). The funding organization had no role in the design and conduct of the Am J Kidney Dis. 2014;64(6):937-953

study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. Financial Disclosure: The authors declare that they have no other relevant financial interests. Contributions: Research idea and study design: JRC, CSH, WCW, JCC, SP, GFMS, AT; data acquisition: JRC, AT; data analysis/interpretation: JRC, CSH, AT; supervision or mentorship: AT. Each author contributed important intellectual content during manuscript drafting or revision and accepts accountability for the overall work by ensuring that questions pertaining to the accuracy or integrity of any portion of the work are appropriately investigated and resolved. AT takes responsibility that this study has been reported honestly, accurately, and transparently; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.

SUPPLEMENTARY MATERIAL Table S1: Search strategies. Note: The supplementary material accompanying this article (http://dx.doi.org/10.1053/j.ajkd.2014.06.024) is available at www. ajkd.org

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