The prevalence and evidence-based management of needle fear in adults with chronic disease: A scoping review.

Introduction

People with chronic disease may require frequent and long-term exposure to needles as part of essential disease treatment and, in some instances, to sustain life. People receiving haemodialysis for kidney failure are one such cohort, typically requiring insertion of six large-bore needles/week, or a minimum of 312 needle insertions per year. Chemotherapy or insulin treatments also necessitate multiple injections, infusions, and blood tests over sustained periods.

Needle fear is a common barrier to initiating or adhering to medical treatments [1–3]. Needle fear exists on a continuum of severity from dislike and discomfort to phobia [4]. In the general adult population, the prevalence of injection fear was found to be 16.1% in the Netherlands [5]. The frequency of needle phobia in general adult populations is less common; it was 1.1% in the Netherlands [5], 0.5% in South Korea [6], 1.6% in Sweden [7], and 2.1% in the USA [8]. Both needle fear and needle phobia were found to be more common in women than men [9–11]. Interventions include desensitization therapy [12] and countering vasovagal syncope, for example, by tensing muscles [13]. However, these approaches are not applicable for less severe, yet likely more common needle fear or distress. Exposure-based interventions for the management of individuals with high levels of needle fear across the lifespan have previously been recommended [4]. Needle distress is likely underreported by patients who accept it as the price for staying alive with therapies. It is not systematically measured in clinical care and therefore remains under-recognised and challenging for clinicians and patients to manage.

Existing research concerning needle fear and its management has focussed on paediatric populations [14, 15] or infrequent needle exposure, such as dental procedures [12] and vaccinations [16, 17]. Given the increasing prevalence of chronic disease worldwide [18–20] we synthesised the literature regarding needle fear prevalence and management to assist in clinical care of this cohort.

Methods

We followed methodology by Arksey and O’Malley [21] and reported according to guidelines for scoping reviews (PRISMA-ScR) [22].

The research question was: ‘What is the prevalence of, and management strategies for, needle fear among adults with chronic disease?’. Search strategy results are defined in Table 1. The search was conducted in October 2020, spanning literature published between January 1 1989 and October 30, 2020, using PsychINFO, PubMed, ProQuest Central, and Embase. Manual searching of reference lists of systematic and other literature reviews identified additional primary studies. Literature was included if it primarily addressed 1) the prevalence of and/or 2) management strategies or recommendations for needle fear in adults (≥18 years) with chronic disease. We defined ‘needle fear’ as needle discomfort, anxiety, fear, distress and/or phobia. ‘Chronic diseases’ were consistent with the World Health Organisation [20] and the Australian Institute of Health and Welfare [23] definitions and included arthritis, asthma, back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes, mental illness and kidney failure. We excluded acute medical conditions, paediatric populations, more infrequent procedures involving needling (e.g. dental procedures, immunisation), intravenous drug use and qualitative studies other than reports discussing management of needle fear.

Dates included in search: 1 January 1989–30 October 2020. Searches conducted 30 October 2020.

The PRISMA flow diagram depicting article selection process is shown in Fig 1. Initial exclusions were made independently by ED and RLL based on title and abstract (Eligibility Step 1). ED reviewed full-text articles for eligibility and conferred with authors RLL and SJ in cases of ambiguity (Eligibility Step 2).

Results

Thirty-two articles were included (Table 2).

Articles included 24 cross-sectional studies [1–3, 25, 26, 28–30, 33, 36, 37, 39–45, 47, 50–52], one abstract of a literature review [38], one prospective cohort study [34], two case reports [31, 48], one randomized controlled trial [24], and three reports [27, 32, 49]. The included studies used a variety of methodology to define and assess needle fear or phobia, ranging from a single question within a broader questionnaire, face-to face interviews to assessment of fear or phobia using a dedicated validated tool (eg. Diabetes Fear of Injecting and Self-testing Questionnaire D-FISQ or the Blood-Injection Symptom Scale (BISS)). This made interpretation between studies difficult.

Twenty-four articles assessed prevalence of needle fear [1–3, 24–26, 28–30, 33–36, 38–45, 47, 50–53], five described only management strategies or recommendations [27, 31, 32, 48, 49] and three reported both prevalence and management [2, 24, 34]. Of the eight articles that suggested management recommendations, three were underpinned by research evidence [27] or outcome data from quasi-experimental study [34] and randomised-controlled trial [24].

Twenty articles addressed diabetes [3, 34–44, 46–53], seven addressed chronic kidney disease [1, 28–33], and five addressed cancer [2, 24–27].

The majority of studies originated from USA, Netherlands and the UK in outpatient settings.

Prevalence of needle fear ranged from 17–52% [2, 24–26] among adults with past or current experience of chemotherapy (Table 2, section 1a). Two studies explored feelings of disgust, fear or discomfort at the sight of blood or receiving injections, with needle fear experienced by 21/124 (17%) [26] and 36/197 (18%) [25]. Self-report measures of ‘needle fear’ included the Blood-Injection Symptom Scale (BISS) [26], the Blood-Injection Injury Scale [25], and a semi-structured interview [2]. ‘Needle phobia’ was determined by a score of ≥5 across visual analogue scales of anxiety, fear, aversion, and stress [24].

Needle fear was reported by 25–47% of adults receiving peritoneal dialysis or haemodialysis (Table 2, section 1b) [1, 28–30]. Mulder et al.’s [29] validation study of the Dialysis Fear of Injection Questionnaire (DFIQ) in haemodialysis patients revealed 20/45 (44%) had fear of needles in the pilot study. In the validation component (n = 86), participants reported feeling afraid 22/86 (26%), nervous 36/86 (41%) or worried 28/86 (33%) the “moment the nurse comes to insert the needle”.

In response to two researcher-administered questions, 198/551 (36%) of peritoneal and haemodialysis patients reported experiencing needle fear, 73/208 (37%) of whom indicated this had influenced their choice of kidney replacement therapy [30]. 13/53 (25%) of people who refused haemodialysis cited fear of needles and complications as a reason [1]. Needle phobia was the most prevalent barrier to self-care haemodialysis with 81/173 (47%) reporting needle phobia from a researcher developed questionnaire [28]. Fear of needles was cited as a barrier toward arteriovenous fistula creation and use in 11/73 (15%) of haemodialysis patients that underwent in-person interviews [33].

Across four primary studies of adults with insulin-treated diabetes, the Diabetes Fear of Injecting and Self-testing Questionnaire (D-FISQ) yielded estimates of needle fear between 0.2–43% (Table 2, section 1c) [34, 42, 45, 46]. In 350 diabetes patients, D-FISQ scores were greater in patients with severe levels of anxiety, assessed by the State Anxiety [36]. A literature review abstract which searched articles related to prevalence of needle fear, needle phobia, injection fear or blood-injury-injection phobia suggested needle fear affects 28% of patients receiving insulin injections, however no details of assessment methods were included [38].

Among patients receiving insulin, 6/240 (3%) scored ≥ 3 on items “I am afraid of injecting myself” and “I’m afraid to prick my finger” using the Barriers to Diabetes Questionnaire, indicating “serious problems” with needles [47]. A study utilising face-face interviews examined the prevalence of primary non-adherence with insulin and barriers to insulin initiation in patients with type 2 diabetes [51]. This study revealed that 47% (105/225) delayed insulin treatment. Of the 105 patients who delayed treatment, 35% (37/105) reported needle phobia due to fear of pain. In a study of Type 2 diabetes patients receiving injectable antidiabetic therapies (IAT), 185/500 (37%) of patients were afraid of injection and felt fear when thinking of a needle [50]. In the same study, 137/200 (67%) Endocrinologists reported via questionnaires that fear of injection was a major concern for patients for initiating injectable treatment [50].

Interviews with patients with Type 2 diabetes revealed 47/59 (80%) were afraid of pain associated with needles and injections; this was 100% in a sub-sample (n = 32) who refused insulin therapy despite medical advice [40]. A “fear of needle injections”, an item on the Chinese Attitudes to Starting Insulin Questionnaire, was the most prevalent negative attitude towards starting insulin in 205/293 (70%) of patients with type 1 diabetes [37]. Patients treated with insulin 33/115 (28%) for less than one month had a high injection anxiety score on an author-created questionnaire, 16/115 (14%) of whom had avoided injections and 48/115 (42%) indicated they would be “troubled by more frequent injections” [43].

Fear of self-injection or anticipated pain with injections was reported by 35–53% of diabetics without experience of insulin [3, 39]. Of non-insulin dependent patients with type 2 diabetes 56/200 (28%) were unwilling to receive insulin, with 50% citing anticipated pain and “inability to take” needling every day as a key reason (although not clear if this was due to distress or anxiety) [41]. Similarly, 67/214 (31%) diabetic patients who initially refused insulin or who received insulin administration by a physician indicated fear of needles as a barrier [44]. Among Type 2 diabetic patients more than half 243/468 (52%) expressed unwillingness to start insulin therapy, the attitudinal items from the administered questionnaire that most strongly distinguished unwilling from willing participants included injection-related anxieties including fear of needles, with 218/243 (90%) of unwilling patients being afraid of needles compared to 130/225 (58%) of willing patients [52]. In 102 patients with type 1 diabetes, those with high scores for fear of blood and injury as measured by The Fear Questionnaire [54], performed fewer blood glucose measurements and had poorer glycaemic control than patients without fear [35].

Eight sources described strategies or recommendations for needle fear management: one RCT of 25 adult chemotherapy patients [24], one report of a treatment protocol [27], one cross-sectional survey of 208 women with breast cancer [2], two case reports [31, 48], one recommendation report [32], one narrative report [49], and one prospective cohort study of 65 pregnant women predominantly with pre-gestational diabetes [34].

Kettwich et al. [24] delivered an intervention among 25 adults receiving chemotherapy including random exposure to conventional or stress-reducing needles and syringes (decorated barrel with colourful glitter stickers) (Table 2, Section 1a). Emotional responses were measured using visual analogue scales of anxiety, aversion, fear and overall stress (score range 0–10, higher scores indicating greater fear [24]. Fifty-two percent of the sample had a phobia of butterfly needles pre-intervention (determined by a score of 5 or more). Among this group, a 92% reduction (P<0.001) of aversion, anxiety, fear and overall stress was observed when exposed to stress-reducing compared to conventional devices, however no follow-up data was collected.

The ‘CALM’ treatment guide study included rapid stress management techniques for patients receiving intravenous chemotherapy, including mindful moist mouth, stress balls, and progressive muscle relaxation [27]. Other “anxiety control strategies” included safety behaviours (e.g. medication, presence of caregiver), offering control choices (e.g. taking a break during procedures) and distraction. Authors noted suggestive language, namely “discomfort warnings” from health professionals contributed to patient discomfort. No evaluation of strategies was described.

Cox & Fallowfield [2] recommended nursing staff “vary” the treatment environment (e.g., room, bed, chair), distract the patient away from the sight of needles and provide opportunity to discuss needle anxiety prior to chemotherapy; however implementation and evaluation was not conducted.

Rapid exposure and desensitisation was applied over three sessions to reduce needle phobia in a 64-year-old male requiring dialysis, resulting in reduced subjective distress [31]. Strategies included reclining posture, sustaining tension of facial muscles and extremities and thinking of a situation triggering anger. Biofeedback through blood pressure and pulse monitoring demonstrated changes in blood pressure and pulse. Imaginal exposure implemented by a therapist included simulation of needling. Twice-daily exposure tasks were self-directed by the patient at other times.

The British Renal Society made recommendations for management of patient needle anxiety based on consensus opinion of 15 nurses from 13 UK dialysis units and research evidence where available [32]. Recommendations included written information, photographs and illustrations to prepare patients for needling, desensitisation, written arteriovenous access plans, visual routines, distraction through relaxation, and creating a calm environment. Authors highlighted the importance of listening, trust between patients and staff, and use of coping strategies, although these were not described.

Feitosa et al. [34] evaluated a multidisciplinary diabetes education program (nurses, endocrinologists, dieticians and obstetricians) on fear of self-injecting and testing among 65 women with pre-gestational or gestational diabetes taking insulin during pregnancy. Education included the impact of hyperglycaemia, diet and lifestyle, and training on self-monitoring of blood glucose and insulin injection administration. Women completed the short D-FISQ at the first review and within the last two weeks of pregnancy or postpartum. Needle fear was identified in 43.1% of participants’ pre-intervention. Post-intervention, fear of self-injection significantly reduced from 39% to 13% (p = 0.001) and similarly, fear of self-testing from 28% to 14% (p = 0.012), despite no specific strategies for needle fear in the intervention. Among women with pre-gestational diabetes specifically, fear of self-injection reduced from 40% to 15% and fear of self-testing (blood glucose) from 33% to 15%, (not statistically significant).

Strategies to address needle fear as a barrier to insulin use included describing physical characteristics of needles and insulin pens to patients and in cases of “severe fear” (undefined), informing patients of alternative insulin pumps or desensitization techniques by a “behaviour counsellor” (undefined) [49]. For a 33-year-old woman with Type 1 diabetes, management strategies included behavioural modification techniques, topical anaesthetic cream, education about anxiety, pre-medication and offering alternative therapies (jet injection devices without needles) [48].

Discussion

This review has demonstrated the high prevalence of needle fear and distress among adults with cancer, diabetes or kidney failure. We identified 32 diverse heterogeneous articles with variable scientific methodology, ranging from non-evidence-based recommendations to one randomised controlled trial. Only eight studies addressed the management of needle fear, indicating it is under-researched in adult chronic disease populations. Even fewer of these provided sufficient detail about strategies, including timing and frequency of delivery, or formal evaluation. This dearth of evidence may reflect a lack of recognition of the seriousness of this issue for patient well-being, where refusal or avoidance of treatments may result in reduced quality of life, reduced lifespan, or death. Whilst needle fear is frequently cited as a reason for treatment avoidance among such groups [1–3], the review highlights the need for high-quality evidence of strategies or interventions to enable better management of this problem in clinical care.

The frequency of needle fear varies widely across studies–from 0.2–80% among patients with diabetes, 17–52% in those with cancer and 25–47% in those with kidney failure. Variability in the prevalence of needle fear may due to differences in the underlying demographics, frequency of medical procedures or characteristics of the patients [9, 24]. The diversity of assessment measures used to identify needle fear may have contributed to the variation in frequency between studies. The D-FISQ and its variant, the DFIQ, were used among patients with diabetes or kidney failure, as a validated measure of fear of injection and or self-testing associated with insulin or dialysis therapies [29, 34, 36, 42, 45, 46, 53]. However, a variety of other assessment methods were used including psychometric self-report tools [25, 26, 35, 39], investigator-created surveys [1, 28, 30, 41, 50, 52], and face-to-face interviews [2, 33, 40]. Moreover, needle phobia was determined by single or multiple items on self-report measures [2, 24, 28, 51], not formal diagnostic assessment.

The prevalence estimates yielded suggest a need for routine screening of needle fear via validated patient-reported measures in chronic disease cohorts where needle exposure is high. Measures that assess needle fear in the context of a therapy, such as the D-FISQ, should be utilised where available. Screening may be warranted particularly prior to treatment initiation, as needle fear is associated with treatment refusal [1, 33, 40, 44, 52], or in the early weeks and months of therapy, when fear appears heightened [1, 42, 43, 55]. Early identification of patient fear or misconceptions of therapy could aid in treatment-decision making and provide opportunity for education and early intervention. This would likely reduce patient distress, improve treatment adherence and prevent resulting complications. Where standardised measures are not available or feasible, simple questions about the patient’s preferences for treatment, including regarding needles, validates their concerns and allows opportunity for discussion about how fears may be managed.

Aversion to needles can be conceptualised on a continuum, from fear, to more serious presentations warranting the clinical diagnosis of phobia [56]. In this review the distinction between needle fear, fear of pain from needles and a diagnosed anxiety disorder such as phobia, was seldom made by authors; rather these terms were used interchangeably. Consistent with the continuum of distress, management may range from simple, targeted interventions to an intensive psychological treatment program. Individuals with a formally diagnosed needle phobia will require the latter; delivered by appropriately trained clinicians, such as psychologists or psychiatrists. Evidence exists from controlled trials for the effectiveness of exposure therapy and desensitization therapy for such individuals [4, 15, 32, 57] and was recommended by some articles reviewed here [31, 32] however there was a lack of detail of therapeutic activities, nor was there evidence of evaluation of their application in the context of different chronic disease therapies from the selected peer review studies in this scoping review.

For individuals with mild to moderate fear of needles, potential psychological interventions may include education or cognitive behavioural therapy programs inclusive of relaxation and cognitive restructuring techniques. In the current review, psychological strategies to reduce fear included stress management, distraction, and relaxation [2, 27, 32]. Education about treatment and needling, including use of visual and written materials was recommended [32, 34, 48], however only one study described formal evaluation of an educational program which resulted in a reduction in needle distress, despite not including targeted interventions for this [34]. Therapeutic modifications, such as changes to needling devices and offering alternative treatments (i.e. without needles) were also recommended [2, 24, 49]. Despite these management strategies being identified in the current review, there is a lack of high-quality evidence of intervention protocols to prevent or alleviate needle fear among adults with chronic disease, with very little to no replication of findings. This may be in part due to under recognition of patient needle distress among care providers and lack of systematic screening. There was often overlap of fear of pain and fear of needles within selected.

Further longitudinal assessment of needle fear over the course of disease and treatment is needed, as are randomised trials of interventions to address this, tailored to the specific context and features of chronic disease therapies.

This review did not find research articles relevant to the fear of needles in patients with arthritis, asthma, chronic back pain, cardiovascular disease, chronic obstructive pulmonary disease, or mental illness. Such patients also require clinical evaluation through laboratory testing which may require periodic blood draws. Moreover, hospitalization may be required which involves invasive procedures. It is important that future research on needle fear be conducted in these patients as well.

This review has some limitations. The search strategy utilised Australian Institute of Health and Welfare [23] terms for the chosen chronic diseases of interest, and wild cards were not used. We only included studies published in English between 1989 and 2020.Due to heterogeneity of articles identified we were unable to grade the evidence or make definitive conclusions regarding appropriate assessment tools for needle fear or strategies for clinical care.

This review has highlighted that needle fear is a significant problem for adults managing chronic disease, particularly cancer, kidney failure and diabetes. It has the ability to erode long-term health by undermining the initiation of, or engagement in, life-sustaining treatments and contributes to the psychological burden associated with chronic disease management. Better understanding of the factors associated with the origins and promoters of needle fear is needed. The development and evaluation of effective treatments is urgently required in order to improve the physical and psychological wellbeing of adults living with chronic disease with frequent needle exposure.