Palliative Care Strategy for HIV and other diseases - FHI 360

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2. extent of palliative care need
Although palliative care is an essential form of care, it is frequently unavailable to those
who need it. Every year, millions endure pain or psychosocial and spiritual suffering. Millions
more struggle to care for sick loved ones or grieve their loss. And while a vast number
of children need palliative care, the availability of pediatric palliative care programs is even
more limited than for adults. 7
An estimated 33.2 million people are living with HIV and another 24 million with cancer,
three-quarters of them in resource-limited countries. 8, 9 By 2025, more people will die from
chronic illness rather than acute illness. 10 Over the next 50 years cancer rates in Africa are
expected to grow by 400 percent. 11, 12 Study after study shows that people with such lifethreatening
illness experience high rates of pain and psychosocial and spiritual distress
throughout the trajectory of the illness. 13
Palliative care needs are often under-assessed and under-addressed. Up to 80 percent of
pain in PLHIV is under-treated. 14 And about two-thirds of palliative care needs are missed
on clinical visits. 15 Some populations, such as women and drug users, are documented to
have more palliative care needs than others. 16 Both populations are more likely to have
problems under-assessed, and have higher levels of physical and psychosocial suffering and
17, 18, 19
lower quality of life.
palliative Care needs oF plhiv
Between 30 and 98 percent of people with HIV experience pain, which generally increases
in frequency and severity toward the end of life. 20, 21 Among those with AIDS, the range is 63
to 98 percent. Studies documenting pain among PLHIV on ART have found from 30 to 60
percent presenting with moderate to severe pain. 22, 23, 24 Physical symptoms, including pain,
are also experienced early in diagnosis and during ambulatory periods of disease. 25
Prevalence of other symptoms is also high among people with HIV. Distressing symptoms
can range from fatigue to nausea and insomnia. In people who are symptomatic or have
AIDS, the following symptoms are particularly prevalent:
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anorexia (63 percent)
fatigue (60–71 percent)
fever (48 percent)
insomnia (51–55 percent)
skin problems (34–72 percent)
26, 27, 28
cough (37–58 percent)
However, symptoms and medication-related side effects are also common among PLHIV
on ART. The presence of symptoms and side effects has also been documented as a barrier
29, 30, 31
to ART adherence in a growing number of studies.
Psychological distress is also prevalent. PLHIV in the United States are three times more
likely to have psychiatric illness than those who are HIV-negative. Studies show that from
38 to 75 percent of PLHIV will experience one psychiatric disorder. 32 Rates of depression
range from 22 to 63 percent (15 percent is the rate of depression in the general US popula-