Abstract
Summary
As of 31 March 2011, 6696 HIV diagnoses had ever been reported in Scotland; of these, 1791 individuals had died, 3339 were attending specialist services, but the remainder had defaulted from specialist care; an investigation into their reasons for non-attendance, and the efforts of services to re-engage, was undertaken by British Association for Sexual Health and HIV Scottish branch using a web-based survey questionnaire. Twelve of the 13 Scottish HIV services returned information for 424 of 579 eligible cases; 112 of these 424 individuals were identified as genuine non-attendees. Findings indicate that the epidemiology of these non-attendees is similar to that of the whole Scottish HIV cohort. Three-quarters of individuals failed to attend a booked appointment following their last known attendance and very few attempts to contact non-attending individuals were successful. This survey has refocused attention on those lost to follow-up, while quality of the national data-set has improved, providing a clearer epidemiological picture of people living with HIV in Scotland.
INTRODUCTION
In the UK, surveillance data indicate that the majority of HIV-diagnosed individuals regularly attend specialist care services for treatment and monitoring in line with the British HIV Association guidelines; 1 –3 however, approximately one-fifth of individuals are not entering, or are defaulting from, care. In England, Wales and Northern Ireland, 19% of the 72,218 individuals who attended in at least one year between 1998 and 2007 were lost to follow up. 1 By comparison, in Scotland, as of 31 March 2011, of the 6696 HIV diagnoses reported since monitoring began in 1984, 1791 were known to have died, 3339 were attending specialist care services, while 23% (1566) had been lost to follow up. 2 Similar data from French HIV specialist centres have been published. 4 To understand the reasons for non-attendance among the Scottish cohort with a view to informing future strategies to retain individuals in specialist care, an investigation was undertaken as part of the HIV Action Plan for Scotland. 5 Further to a qualitative research study focusing on the barriers and issues which prevent people living with HIV (PLWH) from engaging with, and remaining in, specialist clinical services, 6 the Scottish branch of the British Association for Sexual Health and HIV (BASHH) agreed to perform an investigation to: (i) identify non-attendees throughout Scotland; (ii) examine the efforts of services to re-engage with these individuals; and (iii) identify the reasons for non-attendance among individuals not known to have attended in the last 12 months.
METHODS
Through examination of Health Protection Scotland's (HPS) integrated HIV diagnoses and specialist care attendance data-set, individuals were eligible for inclusion in the investigation if: (i) their diagnosis had been reported up to 31 March 2011, (ii) they had not attended in the previous 12 months and (iii) they had at least one attendance since 1 April 2001.
Using the Lime Survey ® (Hamburg, Germany) software tool, 7 a web-based survey questionnaire was designed to establish: (i) the individual's current status (i.e. genuine non-attendee, now deceased, moved or re-entered monitoring); (ii) efforts made by services to re-engage with non-attendees; and, (iii) whether any further epidemiological information was available.
A designated clinical investigator from each specialist service was provided with a list of non-attendees who met the above eligibility criteria, and the survey questionnaire was completed online for each individual between June and August 2011. Quantitative questionnaire data were subsequently analysed using the Statistical Package for Social Scientists (SPSS, New York, USA) Version 14.0.
RESULTS
Of 1566 individuals who had not entered, or had defaulted from, specialist care, 579 met the eligibility criteria for inclusion in the investigation outlined above. The remaining 987 individuals were excluded as they (i) had no record of attendance since 1 April 2001 (thus it was unlikely that any useful data regarding reasons for non-attendance would be gained after more than 10 years) and/or (ii) were already known to have left Scotland and (iii) were diagnosed/reported within the previous three months and attendance data were not yet available (Figure 1).
Epidemiological landscape of individuals diagnosed with HIV in Scotland and attendance at specialist HIV services following completion of investigation (August 2011), *Data reported to HPS at the end of March 2011
1
, †Combination of cases who (a) had no record of attendance since 1 April 2001 and/or (b) were already known to have left Scotland, and (c) were diagnosed/reported within the previous three months and for whom attendance data were not yet available. ‡As reported by specialist clinical staff involved in the investigation, 49 individuals had no case-notes, six had died, four had temporarily moved away (outwith UK) and one had other issues
Survey response
Non-attendance at specialist HIV services among HIV-diagnosed individuals eligible for investigation by gender, age group, exposure category and presumed geographical region of exposure
MSM, men who have sex with men
Among the group of 424 eligible individuals for whom information was returned, two-thirds (285/424; 67%) were presumed to have been infected overseas, principally in Africa (202/424; 48%) (Table 1). Of the 285 individuals presumed to have acquired the virus abroad, one-third (89/285; 31%) were thought to have emigrated, perhaps returning to their country of origin. Of those individuals presumed to have been infected in Scotland, 87% were men (45/52) and, of these, the majority (36/45; 80%) were men who have sex with men (MSM).
Of the 112 non-attendees who formed the focus of the analysis, 63 (56%) were men and, at the time of diagnosis, 50 (45%) and 36 (32%) were aged 25–34 and 35–44, respectively. The probable route of transmission was heterosexual intercourse in 73 (65%) cases, MSM in 29 cases, and people who inject drugs (PWID) in six cases (Table 1). Of the 73 heterosexual cases, 70 were presumed to have been infected outwith Scotland; the majority of these individuals were thought to have acquired their infection in Africa (62/73; 85%) and, of these, 63% (39/62) were women. Among the MSM cases, half (16/29; 55%) were thought to have acquired the virus in the UK (6 in Scotland and 6 elsewhere in the UK). The largest proportions of non-attendees resided in Greater Glasgow and Clyde (45% [50/112]) and Lothian NHS Board areas (43% [48/112]); these are also the areas with the largest cohorts of PLWH.
Efforts of specialist services to contact individuals
The investigation gathered information relating to the efforts of specialist services to contact the 112 non-attendees, but it should be noted that some data were missing from returned questionnaires. Following their last known attendance, 75% (78/104) of the non-attendees, for whom information was returned, had a further appointment booked, 16% (17) did not attend and for 9% (9) this information was not known.
Attempts to contact the non-attendee (e.g. by letter, telephone, email, general practitioner, home visit) were recorded in the notes of 84% (69/82) of individuals for whom responses were received with multiple attempts (between two and five) noted for one-fifth of these individuals; contact was made with eight of the 69 non-attendees.
The length of time between last known attendance and a contact attempt being made was recorded for 70 of the 112 non-attendees; this ranged from six to 450 weeks (median 56 weeks). The outcome of these attempts was reported for 42 of 112 non-attendees and all were unsuccessful.
DISCUSSION
An investigation of HIV-diagnosed individuals not attending for care in Scotland, and who were considered eligible, has revealed that (i) the majority were thought to have been infected abroad, principally in Africa and (ii) half had been lost to follow-up as a result of emigration, moving to another centre elsewhere in the UK, temporarily moving away (outwith Scotland) or having died.
The epidemiology of non-attendees who had refused to attend or for whom no reason for non-attendance was given, and who formed the focus of the analysis, is similar to that of the cohort of PLWH in Scotland with respect to age and gender; over half of non-attendees were men with three-quarters aged 25–44 years. 2 While sexual transmission among heterosexuals and MSM are the main routes of acquisition among PLWH in Scotland (42% and 41%, respectively), 2 two-thirds of non-attendees were presumed to have acquired their virus heterosexually, most notably in Africa (two-thirds of whom were women).
Although much of the information regarding the efforts of services to re-establish contact with non-attendees was missing, the data suggested that three-quarters of individuals failed to attend a booked appointment following their last known attendance and very few attempts to contact non-attending individuals were successful despite prolonged and repeated approaches. While NHS Healthcare Improvement Scotland Standards for HIV Services were published in July 2011 to enhance the quality of care across NHS boards with respect to HIV prevention, diagnosis and treatment and care, 8 no standard for the follow-up of those who fail to attend for care was specified.
Despite the limitations of this survey (e.g. incomplete data), several benefits are apparent. While the uptake of HIV treatment and care is high among the HIV cohort in Scotland (above 80%), 2 there is renewed focus on those lost to follow-up. In addition, the national data-set quality has been improved, enabling a clearer epidemiological picture of PLWH in Scotland to be established. Furthermore, by identifying the largest proportion of those HIV-diagnosed individuals not attending care to be women of African origin, targeted strategies can be developed to engage and retain these individuals, thereby maximizing optimal care among the PLWH cohort. It is expected that a similar survey will continue on an annual basis.
Footnotes
ACKNOWLEDGEMENTS
The authors gratefully acknowledge the contribution made by NHS Health Scotland, in particular Phil Eaglesham, to the development of the investigation proposal. Sincere thanks are also extended to all staff, in particular the clinical investigators, at each of the participating specialist clinics staff who gave of their time to assist with the investigation and without whom this piece of work would not have been possible.