to return to a ‘normal’ life after having experienced an improvement in health on HIV treatment was the key reason for
loss to follow-up of three-quarters of patients who didn't return to a
Kampala HIV clinic, according to a 10-year retrospective cohort analysis
reported in the advance online edition of the Journal of Acquired Immune Deficiency Syndromes.
of the representative sample of 579 patients (19%) additionally showed that of the
83% (481) found alive, 43% (249) had stopped care.
Increased risks for stopping care included: religion, notably ‘born-again’ (23%
believed prayer heals HIV); not being from Kampala but migrated, among other
reasons, because of work, family, war or in search of health care; having
school-age children not in school; not having disclosed HIV status;
having CD4 cell counts equal to or above 250 cells/mm3 (AHR: 1.64 95% CI: [0.34-8.02], p = 0.540 or pre-ART AHR: 2.17 95% CI: [1.63-7.43], p = 0.021).
of antiretroviral therapy (ART) in resource-poor settings has led to an improved quality of life for
many people. However, retention in care remains a challenge, with increasing numbers
being lost to follow-up in many ART programmes in these settings. Primary
reasons identified include fee for service, distance to clinics, poverty and
community-based care however, where peer workers bring the services closer to
patients and provide a support system addressing many of the noted barriers to
retention, reasons for loss to follow-up may well differ.
the importance of understanding these reasons, the authors chose to look at
incidence and risk factors for loss to follow-up and death among patients
enrolled in the Reach Out Mbuya HIV/AIDS Initiative. It provides free
comprehensive community-based ART serving the urban poor in Kampala,
the capital city of Uganda.
Task-shifting, multiple pre-ART sessions, status disclosure to household
members and family-based care are integral to the programme.
2006, increasing loss to follow-up led to revised policies to include pre-ART
patients. In 2008, the introduction of electronic medical records and same-day
tracing following missed clinic appointments further helped reduce loss to
recent evidence of increased loss to follow-up, the authors incorporated within
the study a research team of tracers, independent from Reach Out Mbuya to
ensure anonymity and objectivity, to determine the outcomes of those considered
lost to follow-up.
to follow-up' was defined as absence from the clinic for 90 days after the last
appointment, not known to be dead and not having transferred to another
facility. ‘Stopped care’ was defined as a patient found alive but not
continuing care elsewhere. ‘Self-transferred’ referred to a patient found alive
and continuing care elsewhere. The authors note costs and time preclude most
ART programmes being able to trace patients, so the above distinctions are often
all classified as lost to follow-up.
to care’ referred to patients lost to follow-up but found alive and re-enrolled
into care at Reach Out Mbuya.
retrospective analysis to identify all patients over 18 years of age enrolled
in Reach Out Mbuya who were lost to follow-up between May 31, 2001 and May 31,
2010 was undertaken. A representative
sample was used to determine outcomes. Qualitative Interviews, focus group discussions and data analysis were used
to understand reasons for loss to follow-up.
the 83% found alive 249 (43%) had self-transferred. The median time from
enrolment to loss to follow-up was 1.14 years (IQR: 0.46-2.48 years).
61 (12.7%) who returned to care at a median time of 911 days (IQR: 525-1546
days) had significantly lower CD4 cell counts compared to when they were lost
to follow-up 205 cells/mm3 (IQR: 172-440 cells/mm3, p<0.0001) and 401
cells/mm3 (IQR: 324-584 cells/mm3, p<0.0001), respectively, highlighting the
importance of having the means to effectively track and identify those who need
authors’ findings, while confirming previously identified barriers to retention,
also revealed reasons challenging these. The need to return to a ‘normal’ life
after having experienced a better quality of life was the primary reason for
loss to follow-up according to the interviews. People living with HIV are
acutely aware that their new ‘normal’ life has changed. They have to work hard
to live with their condition and adapt to the disruptions to ‘normalise’ their
everyday lives, relationships and activities.
been in the programme for one to four years was also a high risk for stopping
care. The authors suggest patients having migrated to Kampala
had stabilised and went back home after having an improved quality of life.
influence of religion underscored the need to target religious leaders with
discussions on the benefits of ART, the authors add.
authors note that, surprisingly, only 6% of those interviewed spoke of stigma as
a reason for stopping care. This may well reflect Reach Out Mbuya’s peer model
of care in which 95% of the community workers are also clients.
peer community health workers are recognised as important in follow-up, the
authors note that patients felt close follow-up at home was “a barrier to
continuity of care citing the need for confidentiality and their busy work
Out Mbuya provides financial and non-financial support to protect poor households
from further impoverishment that ill health brings, so alleviating the need for
those in poverty to choose between health care and food or shelter. Yet, many
still stop care in spite of these benefits with patients citing poor staff
attitudes and long waiting times, note the authors.
death rates in this lost to follow-up cohort is explained, they add, by this
organised community system of care making early diagnosis, recognition and
management of side-effects and prompt referrals the norm. Same-day tracing of
loss to follow-up means death is reported within days of a missed appointment.
strength of the study is that only 5.5% were untraceable.
authors conclude “that many on ART have an improved quality of life. HIV care
should be normalised and managed as a chronic disease with patients taking a
central role in the management of their health while identifying those in need
of close follow-up. Efforts are needed to improve referrals and mechanisms to
track patients who transfer to different facilities; and trace those who stop
treatment to convince them to return to care.”