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• Journal article
  Bruton PJ, Rai T, Day S, Ward Het al., 2018,

  Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014

  , BMJ Open, Vol: 8, ISSN: 2044-6055

  Objectives: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment, from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example whether they had experienced HIV care in the pre-treatment era.Design: Qualitative interview study with framework analysisSetting: Two large HIV adult outpatient clinics in central London. Participants: 52 HIV positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre-ART), 1997 to 2005 (complex ARTs), 2006 to 2012 (simpler ARTs), 2013 onwards (recent diagnoses).Results: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side-effects from early antiretroviral therapy (ART). However, despite improvements in ART and life expectancy over the epidemic we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone, fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis, engaging with care was facilitated by a flexible approach from services/clinicians and initiating treatment was a major life decision. Conclusion: We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment services should continue to recogn

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• Journal article
  McGrath-Lone L, Ward H, Schoenborn C, Day Set al., 2015,

  The effects of cancer research participation on patient experience: a mixed-methods analysis.

  , European Journal of Cancer Care, Vol: 25, Pages: 1056-1064, ISSN: 1365-2354

  Patient-reported benefits of research participation have been described by study participants; however, many studies have small sample sizes or are limited to patient groups with poor prognoses. The purpose of this study was to explore the effects of research participation on patient experience using survey responses from a large, national sample of cancer patients (N = 66 462) and interviews with breast cancer patients attending a London trust. Multivariate logistic regression was used to investigate associations between taking part in research and positive patient experience. Based on our analysis, patients who participated in research were more likely to rate their overall care and treatment as 'very good/excellent' (ORadj :1.64, 95%CI: 1.53-1.76, P < 0.001) and to describe positive patient experiences, such as better access to non-standard care, better interactions with staff and being treated as an individual. However, findings from our interviews indicated that there was no common understanding of what constitutes cancer research and no clear delineation between research participation and standard care, from the patient perspective. Further work to explore how participation positively influences patient experience would be useful to develop strategies to improve care and treatment for all patients regardless of whether or not they choose, or have the opportunity, to take part in research.

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• Journal article
  Kim S-H, Gerver SM, Fidler S, Ward Het al., 2014,

  Adherence to antiretroviral therapy in adolescents living with HIV: systematic review and meta-analysis

  , AIDS, Vol: 28, Pages: 1945-1956, ISSN: 0269-9370

  Objective: Adolescent and young adult (AYA) populations (12–24 years) representover 40% of new HIV infections globally. Adolescence is sometimes characterized byhigh-risk sexual behaviour and a lack of engagement with healthcare services that canaffect adherence to antiretroviral therapy (ART). Despite adherence to ART beingcritical in controlling viral replication, maintaining health and reducing onward viraltransmission, there are limited data on ART adherence amongst AYA globally. Weundertook a systematic review and meta-analysis of published studies reportingadherence to ART for AYA living with HIV.Design and methods: Searches included Embase, Medline and PsychINFO databasesup to 14 August 2013. Eligible studies defined adequate adherence as at least 85% onself-report or undetectable blood plasma virus levels. A random effects meta-analysiswas performed and heterogeneity examined using meta-regression.Results: We identified 50 eligible articles reporting data from 53 countries and 10 725patients. Using a pooled analysis of all eligible studies, 62.3% [95% confidence interval(CI) 57.1–67.6; I2 : 97.2%] of the AYA population were adherent to therapy. The lowestaverage ART adherence was in North America [53% (95% CI 46–59; I2 : 91%)], Europe[62% (95% CI 51–73; I2 : 97%)] and South America [63% (95% CI 47–77; I2 : 85%]and, with higher levels in Africa [84% (95% CI 79–89; I2 : 93%)] and Asia [84% (95% CI77–91; I2 : 0%].Conclusion: Review of published literature from Africa and Asia indicate more than70% of HIV-positive AYA populations receiving ART are adherent to therapy and lowerrates of adherence were shown in Europe and North America at 50–60%. The globaldiscrepancy is probably multifactorial reflecting differences between focused andgeneralised epidemics, access to healthcare and funding.

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• Journal article
  Elmahdi R, Ward H, Cooke G, Fidler Set al., 2014,

  HIV TESTING Implementation of HIV testing is patchy in the UK

  , BMJ-BRITISH MEDICAL JOURNAL, Vol: 349, ISSN: 1756-1833
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• Journal article
  Mc Grath-Lone L, Marsh K, Hughes G, Ward Het al., 2014,

  The sexual health of female sex workers compared with other women in England: analysis of cross-sectional data from genitourinary medicine clinics

  , SEXUALLY TRANSMITTED INFECTIONS, Vol: 90, Pages: 344-350, ISSN: 1368-4973
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  • Citations: 39
• Journal article
  Macdonald N, Sullivan AK, French P, White JA, Dean G, Smith A, Winter AJ, Alexander S, Ison C, Ward Het al., 2014,

  Risk factors for rectal lymphogranuloma venereum in gay men: results of a multicentre case-control study in the UK

  , SEXUALLY TRANSMITTED INFECTIONS, Vol: 90, Pages: 262-268, ISSN: 1368-4973
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  • Citations: 36
• Journal article
  Pallawela SNS, Sullivan AK, Macdonald N, French P, White J, Dean G, Smith A, Winter AJ, Mandalia S, Alexander S, Ison C, Ward Het al., 2014,

  Clinical predictors of rectal lymphogranuloma venereum infection: results from a multicentre case-control study in the UK

  , Sexually Transmitted Infections, Vol: 90, Pages: 269-274, ISSN: 1368-4973

  Objective: Since 2003, over 2000 cases of lymphogranuloma venereum (LGV) have been diagnosed in the UK in men who have sex with men (MSM). Most cases present with proctitis, but there are limited data on how to differentiate clinically between LGV and other pathology. We analysed the clinical presentations of rectal LGV in MSM to identify clinical characteristics predictive of LGV proctitis and produced a clinical prediction model.Design: A prospective multicentre case–control study was conducted at six UK hospitals from 2008 to 2010. Cases of rectal LGV were compared with controls with rectal symptoms but without LGV.Methods: Data from 98 LGV cases and 81 controls were collected from patients and clinicians using computer-assisted self-interviews and clinical report forms. Univariate and multivariate logistic regression was used to compare symptoms and signs. Clinical prediction models for LGV were compared using receiver operating curves.Results: Tenesmus, constipation, anal discharge and weight loss were significantly more common in cases than controls. In multivariate analysis, tenesmus and constipation alone were suggestive of LGV (OR 2.98, 95% CI 0.99 to 8.98 and 2.87, 95% CI 1.01 to 8.15, respectively) and that tenesmus alone or in combination with constipation was a significant predictor of LGV (OR 6.97, 95% CI 2.71 to 17.92). The best clinical prediction was having one or more of tenesmus, constipation and exudate on proctoscopy, with a sensitivity of 77% and specificity of 65%.Conclusions: This study indicates that tenesmus alone or in combination with constipation makes a diagnosis of LGV in MSM presenting with rectal symptoms more likely.

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• Journal article
  Mc Grath-Lone L, Marsh K, Hughes G, Ward Het al., 2014,

  The sexual health of male sex workers in England: analysis of cross-sectional data from genitourinary medicine clinics

  , SEXUALLY TRANSMITTED INFECTIONS, Vol: 90, Pages: 38-40, ISSN: 1368-4973
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  • Citations: 21
• Journal article
  Elmahdi R, Gerver SM, Guillen GG, Fidler S, Cooke G, Ward Het al., 2014,

  Low levels of HIV test coverage in clinical settings in the UK: a systematic review of adherence to 2008 guidelines

  , Sexually Transmitted Infections, Vol: 90, Pages: 119-124, ISSN: 1368-4973

  Objectives: To quantify the extent to which guideline recommendations for routine testing for HIV are adhered to outside of genitourinary medicine (GUM), sexual health (SH) and antenatal clinics.Methods: A systematic review of published data on testing levels following publication of 2008 guidelines was undertaken. Medline, Embase and conference abstracts were searched according to a predefined protocol. We included studies reporting the number of HIV tests administered in those eligible for guideline recommended testing. We excluded reports of testing in settings with established testing surveillance (GUM/SH and antenatal clinics). A random effects meta-analysis was carried out to summarise level of HIV testing across the studies identified.Results: Thirty studies were identified, most of which were retrospective studies or audits of testing practice. Results were heterogeneous. The overall pooled estimate of HIV test coverage was 27.2% (95% CI 22.4% to 32%). Test coverage was marginally higher in patients tested in settings where routine testing is recommended (29.5%) than in those with clinical indicator diseases (22.4%). Provider test offer was found to be lower (40.4%) than patient acceptance of testing (71.5%).Conclusions: Adherence to 2008 national guidelines for HIV testing in the UK is poor outside of GUM/SH and antenatal clinics. Low levels of provider test offer appear to be a major contributor to this. Failure to adhere to testing guidelines is likely to be contributing to late diagnosis with implications for poorer clinical outcomes and continued onwards transmission of HIV. Improved surveillance of HIV testing outside of specialist settings may be useful in increasing adherence testing guidelines.

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• Journal article
  Bone A, Mc Grath-Lone L, Day S, Ward Het al., 2014,

  Inequalities in the care experiences of patients with cancer: analysis of data from the National Cancer Patient Experience Survey 2011-2012

  , BMJ OPEN, Vol: 4, ISSN: 2044-6055
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  • Citations: 34

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