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Journal of the Association of Medical Microbiology and Infectious Disease Canada logoLink to Journal of the Association of Medical Microbiology and Infectious Disease Canada
. 2019 Mar 11;4(1):15–23. doi: 10.3138/jammi.2018-0029

Timeliness of diagnosis of HIV in Newfoundland and Labrador, Canada: A mixed-methods study

Sarah Elizabeth Boyd 1, Jill Allison 1, Carla Chantil Penney 1, Kimberley Burt 2, David Allison 2, Peter Kenneth Daley 1,2,
PMCID: PMC9603191  PMID: 36338782

Abstract

Background

Late diagnosis of HIV is associated with poor outcomes and increased cost. Novel HIV testing promotion strategies may reduce late diagnosis. The purpose of this study was to determine the timeliness of HIV testing in Newfoundland and Labrador (NL), missed opportunities for testing, and barriers to HIV testing.

Methods

Demographic and clinical information from individuals diagnosed with HIV in NL from 2006–2016 was retrospectively reviewed. Patients were also invited to participate in semi-structured interviews regarding knowledge about HIV transmission, risk associated with their behaviour, testing decision making, and testing opportunities.

Results

Fifty-eight new HIV diagnoses occurred during the study period: 53/58 (91.4%) were male and 33/58 (56.9%) were men who have sex with men. The mean age at diagnosis was 40.6 (SD 11.05) years. CD4 count at diagnosis ranged from 2 to 1,408 cells/mm3, with a mean of 387 cells/mm3. For 39/58 (67.2%) of individuals, the first-ever HIV test was positive. Of the 58 patients, 55 (94.8%) had had health care contact within the 5 years prior to diagnosis (mean 13.7 contacts). Heterosexual men were more likely to present with a late diagnosis (p = 0.049). Ten (17.2%) individuals agreed to an interview. Thematic analysis revealed that barriers to testing were stigma, negative health care interactions, denial, and fear of the diagnosis.

Conclusions

HIV diagnosis is made later in NL than in other Canadian provinces. Late diagnosis may be prevented if HIV testing became a routine testing procedure.

Key words: AIDS, barriers, HIV, late diagnosis, missed opportunities, testing


It is estimated that 65,000 Canadians are living with HIV, and that 21% are not aware (1). Early HIV diagnosis and treatment improves quality of life (2), mortality (2,3), and treatment success (4), and it may decrease HIV transmission by up to 50% (2). Early HIV diagnosis is an important component of HIV control, which may be improved using routine or targeted HIV testing strategies (5).

The prevalence of late HIV diagnosis (LD) in Canadian provinces ranges from 8.8% to 30%. Although there is no consensus on the definition of “late diagnosis,” most studies define it as a CD4 count of <200 cells/mm3 at diagnosis (Table 1) (611). In 2015, the estimated median diagnostic delay (time from infection to diagnosis) among 39,720 new HIV diagnoses in the United States was 3.0 years (interquartile range [IQR] 0.7–7.8 yr) (5).

Table 1:

Prevalence of LD of HIV in Canadian provinces

Province Definition of LD Year Prevalence of LD, %
British Columbia AIDS diagnosis before or up to 12 mo after the date of the first positive HIV test, or CD4 count <200 cells/mm3 2010–2014 26.6
Manitoba CD4 <200 cells/mm3 when entering care 2015 30
Nova Scotia Initial CD4 count of <200 cells/mm3 within 6 months of HIV diagnosis 2001–2010 24.7
Ontario CD4 count <200 cells/mm3 at diagnosis 1997–2009 29
Saskatchewan CD4 count <200 cells/mm3 at diagnosis 2003–2011 22.7
Five provinces CD4 count of <200 cells/mm3, or presence of an opportunistic illness within 3 mo of diagnosis 2010 8.8

LD = late diagnosis

Demographic factors may predict LD and inform targeted testing strategies. Older age, male sex, heterosexuality, and intravenous drug use (IVDU) are all described predictors of LD (5,10).

In a British study involving 1,112 HIV-positive patients, 25.2% were found to have visited a health care provider (HCP) with an HIV-indicator condition and had not been tested (12). Major reasons for missed opportunities by health care workers included fear of making their patient feel uncomfortable (1317), inadequate HIV training and education (1518), and time and financial constraints (1921).

Based on the local observation of several cases of LD, we studied the timeliness of HIV diagnosis in Newfoundland and Labrador (NL) and explored the reasons for LD including local demographics, missed opportunities to offer HIV testing, and perceived barriers to testing.

Methods

This study was conducted in two parts. A quantitative study was performed using a retrospective chart review. A qualitative study was also conducted using semi-structured interviews with persons living with HIV. Ethics approval was granted by the Health Research Ethics Board of NL (reference number 2016.181).

Quantitative Study

Information regarding patients diagnosed with HIV in NL between January 2006 and July 2016 was provided by the HIV Clinic in St. John’s, NL. This is the only HIV clinic in the province, and it receives all positive HIV test results performed in NL. Patients diagnosed outside NL were excluded. Patient information was acquired from paper clinic charts and an electronic medical file, by a member of the research team. Age at diagnosis, gender, residence, alcohol and drug use, symptoms at diagnosis, concurrent sexually transmitted infections (STIs), and employment status were collected, as well as HIV risk factor information including sexual orientation, IVDU, maternal to child transmission, and birth in an HIV-endemic country. Information regarding HIV testing included the number of previous HIV tests, the date of last HIV test, the date of the positive test, who initiated testing, where the test was performed, and the CD4 count at diagnosis. We defined LD as a CD4 count of <200 cells/mm3 at diagnosis. Clinic visits, emergency department (ED) visits, and hospital admissions within 5 years prior to HIV diagnosis were recorded. The number of visits with a patient’s family doctor was unavailable.

As the distribution of CD4 count at diagnosis (Figure 1) was not normal, nonparametric tests were used to compare the mean CD4 count to determine if certain demographics or characteristics were associated with LD. A Mann–Whitney U test was used for variables with two categories, and a Kruskal–Wallis test was used for variables with three or more categories. SPSS version 22 (IBM Corp., Armonk, New York) was used for analysis.

Figure 1:

Figure 1:

CD4 count at HIV diagnosis

Qualitative Study

All included patients were invited to consent to participate in semi-structured interviews regarding their HIV testing experience. The questions were open-ended and invited a narrative response. Interviews were performed via telephone or in person. Interviews were recorded, transcribed, and coded for important issues and themes. Three authors independently read through the interview transcripts and identified key themes from the data. These themes were compared for consistency between the three researchers. Validity was ensured through inter-rater coding agreement. Qualitative data software analysis using NVivo 10 for Windows, (QSR International, Victoria, Australia) scanned the text for keywords and sorted coded information for thematic analysis.

Results

Quantitative Study

Sixty-six patients were diagnosed with HIV in NL between January 2006 and June 2016. Eight were diagnosed outside of NL and were excluded (Figure 2). Twenty-one patients (36.2%) had a CD4 count <200 cells/mm3 and met the definition of LD. The mean CD4 count of those with LD was 67 (range 2–234) cells/mm3. As seen in Table 2, there was no statistically significant difference in LD associated with sex, urban/rural residence, age, or employment, although increasing age was correlated with LD.

Figure 2:

Figure 2:

Study inclusion

Table 2:

Patient demographics (n = 58)

Variable No. (%) of patients Mean CD4 at diagnosis p-value
Sex
  Male 53 (91.4) 390 0.957*
  Female 5 (8.6) 355
Residence
  Urban 50 (86.2) 364 0.392*
  Rural 8 (13.8) 533
Age, y
  20–29 12 (20.7) 495 0.812
  30–39 11 (19.0) 324
  40–49 24 (41.4) 388
  50+ 11 (19.0) 329
Employment
  Unemployed 13 (22.4) 366 0.881
  Part-time 5 (8.6) 289
  Full-time 33 (56.9) 392
  Retired 2 (3.4) 258
  Disabled 1 (1.7) 396
  Student 4 (6.9) 602

* Mann–Whitney U test

Kruskal–Wallis test

Table 3 describes HIV risk factors. Men who have sex with men (MSM) were less likely to have LD (p = 0.049). Diagnosis was later among three patients born in HIV-endemic countries (p = 0.207).

Table 3:

HIV risk factors (n = 58)

Variable No (%) of patients Mean CD4 at diagnosis p-value
Sexual orientation
  MSM 33 (56.9) 449 Comparing MSM to heterosexual: 0.049*
  Heterosexual 21 (36.2) 262
  Unknown 4 (6.9) 533
IVDU
  Yes 2 (3.4) 387 0.818*
  No 56 (96.6) 387
From HIV-endemic country
  Yes 3 (5.2) 140 Comparing yes to no: 0.207*
  No 49 (84.5) 410
  Unknown 6 (10.3) 326
Blood transfusion
  Yes 1 (1.7) 174 0.690*
  No 57 (98.3) 391

* Mann–Whitney U test

MSM = men who have sex with men; IVDU = intravenous drug use

As seen in Table 4, HIV testing was initiated by HCP in 35 of 58 (60.3%) of cases. For 39 of 58 patients (67.2%), the first HIV test was positive, and 49 (84.5%) had not been tested within a year prior to diagnosis. Diagnosis was later among patients diagnosed in hospital (p = 0.001, compared with STI clinic), among patients who had not been previously tested (p = 0.031 compared with 1–2 previous tests), and among patients not tested in the past year (p = 0.004).

Table 4:

Testing history (n = 58)

  No. (%) of patients Mean CD4 at diagnosis p-value between all groups* p-value comparing individual groups
Who initiated testing 0.292 All p-values > 0.05
  HCP 35 (60.3) 369    
  Patient 15 (25.9) 457    
  Insurance 4 (6.9) 378    
  Immigration 2 (3.4) 124    
  Unknown 2 (3.4) 470    
Site of diagnosis 0.001 Comparing Hospital to STI clinic: 0.001
  Hospital 10 (17.2) 89    
  Primary care 22 (37.9) 358    
  ER 1 (1.7) 3    
  STI clinic 19 (32.8) 579    
  HIV clinic 6 (10.3) 448    
Number of previous HIV tests 0.021 Comparing 0 tests to 1–2 tests: 0.031
  0 39 (67.2) 308    
  1–2 12 (20.7) 604    
  3+ 7 (12.1) 456    
Tested within a year before diagnosis N/A 0.004
  Yes 9 (15.5) 683    
  No 49 (84.5) 333    

* Kruskal–Wallis test

Mann–Whitney U test

Unknown values not included

HCP = health care provider; ER = emergency room; STI = sexually transmitted infection

Table 5 summarizes health care contact within the 5 years prior to HIV diagnosis. Of the 58 individuals, 50 (86.2%) had attended a specialty clinic, 43/58 (74.1%) had been to the ER, and 10 (17.2%) had been admitted to hospital. A total of 55 of 58 individuals (94.8%) had at least one contact with the health care system (mean 13.7 contacts) not including primary care visits, during which HIV testing could have been ordered. Greater numbers of ER visits correlated with later HIV diagnosis, though not significantly (p = 0.652).

Table 5:

Previous health care contact (n = 58)

  No. (%) of patients Mean CD4 at diagnosis p-value
Clinic visits
  0 8 (13.8) 469 0.910*
  1–9 33 (56.9) 383
  10–19 9 (15.5) 330
  20+ 8 (13.8) 387
ER visits
  0 15 (25.9) 402 0.652*
  1–4 28 (48.3) 415
  5–9 9 (15.5) 364
  10+ 6 (10.3) 256
Hospital admissions
  0 48 (82.8) 405 0.374*
  1 8 (13.8) 307
  2 1 (1.7) 528
  3 1 (1.7) 16

* Kruskal–Wallis test

Of the 58 patients, 30 (51.7%) used cigarettes, 34 (58.6%) used alcohol, and 21 (36.2%) used illicit drugs. Drug use was not associated with LD (not shown). As well, 9 (15.5%) had concurrent syphilis, 3 (5.2%) had concurrent hepatitis C, 3 (5.2%) had concurrent chlamydia, and 1 (1.7%) had concurrent gonorrhea. Having a concurrent STI was not associated with LD (not shown).

As seen in Table 6, 20 of 58 patients (34.5%) were asymptomatic at diagnosis. The mean CD4 count for asymptomatic individuals was 511 cells/mm3, compared with 316 cells/mm3 for symptomatic individuals (p = 0.026).

Table 6:

Symptoms at HIV diagnosis (n = 58)

Symptom No. (%) of patients
Asymptomatic 20 (34.5)
Swollen lymph nodes 19 (32.8)
Weight loss 17 (29.3)
Fatigue 16 (27.6)
Thrush 13 (22.4)
Shortness of breath 8 (13.8)
Night sweats 6 (10.3)
Cough 6 (10.3)
Rash 6 (10.3)
Oral ulcers 6 (10.3)
Fever 5 (8.6)
Change in vision 3 (5.2)
Bleeding gums 2 (3.4)
Dizziness 2 (3.4)

Among the 58 patients, 8 (13.8%) presented with one or more AIDS indicator conditions (AIC) (6 patients with Pneumocystis jirovecii pneumonia, 4 patients with cytomegalovirus, and 2 patients with lymphoma). The mean CD4 count among those with AIC was 25 cells/mm3.

Qualitative Study

Of the 58 patients, 10 (17.2%) agreed to be interviewed. All 10 were MSM. The mean CD4 count at diagnosis among those interviewed was 620 cells/mm3, compared with 387 among the whole population (p = 0.086). The four main themes defined were stigma, negative health care interactions, denial, and fear of the diagnosis.

There is a Stigma Surrounding HIV and Testing

The stigma surrounding HIV was brought up in 8 of 10 interviews. Stigma was described in the testing process and after diagnosis.

“But I know when you’re sitting in the waiting room and there’s multiple clinics going on and you’re waiting there… I think “Now am I going to run into anyone I know here now and they’re going to be coming out when I’m going in?” (Participant 5)

“You were almost wishing that it had been cancer because with cancer it’s more accepted in society and with this diagnosis, it’s so taboo and so looked down upon. You don’t realize how badly you will be judged.” (Participant 3)

Negative Interactions with the Health Care System

Of the 10 patients interviewed, 7 mentioned having negative interactions with the health care system during testing and while receiving news of their HIV diagnosis.

“On three separate times while getting tested they asked “Are you an intravenous drug user?” and of course I said no, and there was twice on two different encounters where actually one guy picked my arm up and he was going all over it and my knuckles and said to the other guy “I can’t find any puncture marks”. And I was like “Okay, you’re being a complete shithead … From the front counter to the doctors the attitude is very, very poor. I keep telling people don’t go to that clinic.” (Participant 2)

“I went to go get tested and my doctor said “Nah, you don’t need to get tested for that, you look fine.” Participant 10)

“It can’t Happen to me” (Denial)

When asked if they believed they were at risk for HIV, 7 of 10 participants said they did not think they were at risk. Most were aware of the risks associated with unprotected anal sex, but believed HIV would not happen to them.

“I was aware because I work in health care, so you are aware but you never think it will happen to you … I guess I never thought it would happen to me, and I guess a lot of people do think that “Oh that will never happen”, but it do. It’s out there.” (Participant 3)

“Because I’ve been [tested] before, I knew how easy it was to access, and maybe just after going so many times, it’s like: Well I’ve gone so many times before and it’s always been negative. Why would I bother to keep going?” (Participant 5)

Fear of the Diagnosis

Of the 10 participants who were interviewed, 6 noted that the fear of the HIV diagnosis itself was a barrier to getting tested in the community.

“I’ve talked to guys that I’ve known for years and say, you know, “Do you ever go get tested?” and they say “Nah, I haven’t been there in a couple of years” “You need to go” “I just don’t want to go, I don’t want to know.” (Participant 5)

“No one really wants to go get tested, you know? I think it’s because they’re nervous, they’re scared and they just don’t want to know. That’s it. They just don’t want to know. Their nerves go to the sky and they’re like “No, okay I’m not going to go get tested” and they’re the ones who got it.” (Participant 10)

Additional Themes

Other identified themes included suggestions that the general NL population is uneducated about HIV, that NL lacks adequate support for people with HIV, that NL requires a broader range of HIV testing options, that some individuals no longer fear HIV, and that NL has a drug problem in the MSM community. Each of these themes are important in relation to the social context in which testing choices are made, but were mentioned in fewer interviews.

Discussion

Although HIV incidence is very low, NL has the highest observed prevalence of LD (36.2%) among published studies from Canada, despite our use of a conservative definition of LD (<200 cells/mm3). The United States reported a 46% LD rate in 2015 (22).

Heterosexual individuals were diagnosed later than MSM (p = 0.049), which was also observed in the United States, where diagnostic delay among heterosexual males was 4.9 years compared to with 3.0 years among MSM (p <0.01) (5). We observed significantly more frequent HIV testing among MSM compared to heterosexual individuals (p = 0.036).

Our high percentage of first-time test positives (67.2%) demonstrates low uptake of HIV testing in routine care. The Public Health Agency of Canada has recommended that HIV testing be included in routine preventive care (23), and promoted by HCP, instead of offered in response to requests from patients. Traditional risk factor–based testing promotion does not detect transmission among all risk groups (24,25). Universal testing identified more cases than risk factor–based testing in a randomized trial (26). Although universal testing is expensive in a low HIV prevalence environment, the costs of LD including HIV transmission and opportunistic infections may make universal testing cost-effective (27).

We observed a high number of contacts with the health system that did not result in HIV testing. These are lost opportunities in which patients are already accessible. As opposed to strategies that offer non-traditional testing access, such as in pharmacies or mobile clinics, promotion of testing in the setting of routine care may access larger numbers of patients for less cost. Promotion of routine HIV testing in emergency rooms and medical wards is associated with 53%–84% testing coverage, and barriers to testing lie more with providers than patients (28).

One of the identified barriers in the promotion of routine HIV testing is the perception of the requirement for test-specific patient consent. One solution is “notional consent,” or opt-out testing, in which all patients are tested for the condition unless they refuse the test (29).

We also demonstrated missed opportunities for other STI testing, as testing for chlamydia and gonorrhea at the same time as HIV testing only occurred in about one-third of cases. This is particularly worrisome, as STIs can increase both the acquisition and transmission of HIV (30).

Stigma was the main theme during the patient interviews. A common theme involving stigma was that individuals may feel uncomfortable in the waiting room of an STI clinic because others would think they were promiscuous. Furthermore, some individuals noted that since NL is a small province, confidentiality is not available, especially in small towns.

Negative interactions with the health care system may limit testing. One individual asked for an HIV test and was denied because the doctor said he looked healthy. It has been demonstrated that HCP who discussed HIV prevention with patients were significantly more likely to achieve testing (p < 0.001) (31). Other individuals said they went to get tested for HIV and felt they were judged or treated poorly by the person doing the testing.

Many patients knew the risks involved with unprotected anal sex and knew about HIV risk, but were under the impression that they would not get it. Many participants noted how they would ask if their partner was “clean” and if they said yes, then it was safe to not use a condom. Not having acquired STIs during previous risky behaviour may have led to a false sense of security.

Many individuals may be reluctant to get tested because they are afraid of finding out they are HIV-positive. Patients said they believed HIV was a death sentence before their diagnosis, and many thought they were dying after diagnosis. An Australian study in 2012 involving 1,093 MSM further demonstrated how fear of an HIV diagnosis can impact testing (21).

Other identified misperceptions included the belief that only the receptive partner could become infected, the assumption that HIV testing was included in annual blood testing, and fear of HIV transmission through casual contact.

Limitations

Limitations of this study include a retrospective design, meaning recall bias and lost data may have influenced our conclusions. Furthermore, there may have been a response bias during the interviews and some individuals may have forgotten certain experiences as they had been diagnosed up to 10 years prior to the interview. The sample size is small, but based on our recruitment methods, we feel all eligible cases within the period of study were included. Patients may have been tested and treated outside of NL, which would not have been included. Additionally, there was a selection bias away from LD among those who volunteered to be interviewed. Only 10 individuals agreed to participate in an interview, all of whom were MSM, so their responses may not generalize to all HIV patients.

Conclusions

In conclusion, LD is prevalent in NL, and is associated with non-traditional risk factor populations. Existing opportunities for testing are missed, and policy alternatives to promote routine HIV testing may reduce the incidence of LD.

Acknowledgements:

The authors would like to acknowledge the individuals who generously participated and the HIV clinic staff for assisting with data collection.

Competing Interests:

The authors have nothing to disclose.

Ethics Approval:

Ethics approval was granted by the Health Research Ethics Board of Newfoundland and Labrador (reference number 2016.181).

Informed Consent:

All included patients were invited to consent to participate in semi- structured interviews regarding their HIV testing experience.

Registry and the Registration No. of the Study/Trial:

N/A

Animal Studies:

N/A

Funding:

No funding was received for this work.

Peer Review:

This article has been peer reviewed.

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