e4
5 May 2018
3. Assembly WH. WHA resolution 67.19: Strengthening of
palliative care as a component of comprehensive care
throughout the life course. Geneva, Switzerland: WHO,
2014.
4. Allain TD. Reflection on the death of San Diego Hospice
and the Institute for Palliative Medicine. J Palliat Med 2013;
16:602.
5. Bosnjak S, Maurer MA, Ryan KM, Leon MX,
Madiye G. Improving the availability and accessibility
of opioids for the treatment of pain: the International
Pain Policy Fellowship. Support Care Cancer 2011;19:
1239e1247.
6. Leon M, Florez S, De Lima L, Ryan K. Integrating palli-
ative care in public health: the Colombian experience
following an international pain policy fellowship. Palliat
Med 2011;25:365e369.
7. Paudel BD, Ryan KM, Brown MS, et al. Opioid availabil-
ity and palliative care in Nepal: influence of an international
pain policy fellowship. J Pain Symptom Manage 2015;49:
110e116.
8. Krakauer EL, Nguyen TP, Husain SA, et al. Toward safe
accessibility of opioid pain medicines in Vietnam and other
developing countries: a balanced policy method. J Pain
Symptom Manage 2015;49:916e922.
9. Ferrell B, Malloy P, Virani R. The End of Life Nursing
Education Nursing Consortium project. Ann Palliat Med
2015;4:61e69.
10. Broderick A. Pallium India Wordpress: Ann Broderick 2015.
Available from https://annbroderick1.wordpress.com/. Ac-
cessed January 15, 2018.
11. Foley KM. Global Palliative Care. In: JY R, editor. 2017.
12. Pensack-Rinehart R. ASCO-AMPATH Oncology Institute
Host MCMC in Eldoret, Kenya, February 14-17, 2012. [press
release]. Alexandria, VA: ASCO, 2012.
13. Rhee JY, Luyirika E, Namisango E, et al. APCA Atlas of
Palliative Care in Africa. IAHPC Press, 2017.
14. Gwyther L, Rawlinson F. Palliative medicine teaching
program at the University of Cape Town: integrating pallia-
tive care principles into practice. J Pain Symptom Manage
2007;33:558e562.
15. Ferris FD, Moore SY, Callaway MV, Foley KM. Leadership
development initiative: growing global leaders. Advancing
palliative care. J Pain Symptom Manage 2018;55(2S):
S146eS156.
Prevalence and Characteristics of
Pruritus and Association With
Quality of Life in People Living
With HIV: A Cross-Sectional Study
To the Editor:
Pruritus is a common complaint of people living
with HIV/AIDS (PLWHA) and can cause significant
morbidity.1 Chronic pruritus is a multifaceted symp-
tom that includes physical, psychological, and func-
tional aspects.2 Therefore, it is critical to assess
Letters Vol. 55 No.
pruritus in relationship to quality of life (QOL) in
PLWHA. Data are limited on the relationship between
chronic pruritus and HIV and effect on QOL.3,4 The
prevalence of chronic itch among PLWHA in one
report was 45% and associated with decreased QOL.4
To our knowledge, no published reports exist on the
prevalence of chronic pruritus in PLWHA in India
where HIV remains a public health problem with en-
ormous socioeconomic (SE) impacts. In 2015, the na-
tional adult (15e49 years) HIV prevalence was
estimated at 0.26% (0.22%e0.32%), with appr-
oximately 2,100,000 PLWHA.5 We evaluated the pre-
valence and characteristics of chronic itch and
association with QOL among PLWHA in Mangalore,
South India. Data gathered from this study will enable
physicians and public health policy makers to better
understand the burden of pruritus in PLWHA.
Methods
This cross-sectional study was conducted from June
to July 2013 at the community center nested within a
nongovernmental organization for PLWHA (Hongira-
na) in collaboration with the antiretroviral therapy
clinic in a government teaching hospital located in
Mangalore, a coastal city in the Southern state of Kar-
nataka, with a population of 488,968 (2011 census).
Nearly half of PLWHA belonged to the middle/lower
middle SE status, whereas a third of participants be-
longed to lower/upper lower SE status.6 Based on
World Health Organization guidelines, patients
receive free antiretroviral therapy at the clinic as part
of the national AIDS control program since 2004.
All eligible participants (PLWHA aged 18 years and
older) were approached at the nongovernmental orga-
nization community center and asked to participate in
the study. A total of 343 participants who signed an
informed consent form were included in the study.
This study was approved by the institutional review
boards at participating institutions. A trained research
assistant fluent in Kannada, a local dialect, and En-
glish language collected sociodemographic data
(e.g., age, sex, marital status, education, employment)
and also administered the validated questionnaires in
a private counseling room to all consenting part-
icipants. The prevalence and severity of dermatolog-
ical disorders associated with pruritus is higher in
patients with high HIV viral loads and low CD4þ T-cell
counts7; CD4 counts were obtained from the medical
record review, but viral load measurements were un-
available because of financial constraints.
All participants (n ¼ 343) completed two validated
questionnaires: the Short-Form Itch Questionnaire
and ItchyQOL.8,9 The Short-Form Itch Questionnaire
assessed the severity of itch, associated symptoms with
itch, and relationship to scratching. The ItchyQOL
Vol. 55 No. 5 May 2018
assessed symptoms, functional status, and emotions
related to pruritus. These questionnaires were trans-
lated into Kannada and then back translated to En-
glish for content accuracy and clarity.
After obtaining informed consent, the bilingual
research assistant administered the validated question-
naires in a private setting located at the Hongirana
site. Participants were asked if they currently suffered
from itch or if they had suffered from itch within
the past year, including duration, associated symp-
toms, and location. The prevalence of chronic itch
(defined as more than six weeks of duration) was as-
sessed. Participants were asked to rate 32 descriptors
of their itch on a scale from 0 to 4 (0dnot at all,
1dto a minimal extent, 2dto a mild extent, 3dto a
moderate extent, and 4dto a great extent). Temporal-
ity of itch was assessed by asking about itchiness in
different seasons and at different times of the day.
Participants completed a 22-item ItchyQOL ques-
tionnaire that assessed the patient’s QOL with pruritus
and rated each question on a scale from 1-to-5 scale
(1dnever, 2drarely, 3dsometimes, 4doften, and
5dalways).
All analyses were performed using SPSS 15.00 soft-
ware (SPSS, Inc., Chicago, IL). Descriptive statistics
are presented as mean  SD, and qualitative statistics
are presented as percentages. Spearman’s correlation
coefficients were used to assess relationships between
outcomes. A P-value of <0.05 was considered statis-
tically significant.
Results
A total of 343 participants (mean age 39 years; range
18e74) completed the questionnaire; 223 (65%) were
females. On the day of the interview, 40 (12%) re-
ported itching; of these, the prevalence of itch in
women who had HIV-positive status was 13% (29 of
Fig. 1. Pruritus characteristics reported by study participants (n ¼ 343).
Letters e5
223), whereas only 9% (11 of 119) of men who had
HIV-positive status experienced itch. Participants with
pruritus self-reported worse overall health status than
participants without pruritus; only 55% of them self-
reported as good or excellent health, whereas 77%
of nonpruritic participants reported good or excellent
health. There were no other significant differences in
sociodemographic characteristics between partici-
pants with and without pruritus.
The prevalence of chronic itch (more than six
weeks of duration) in our study population was 20%
(69 of 343). The mean time that the participants suf-
fered from pruritus was seven months with an SD of
23 months. Most participants (77%) with pruritus re-
ported no associated symptoms. The most commonly
reported descriptors of itch included itching in 56 par-
ticipants (16%), hurting in 44 (13%), painful in 44
(13%), and burning in 44 (13%). The top 10 re-
sponses and their severity are shown in Fig. 1. For all
10 responses, to a great extent was the most common
choice when assessing how much each phrase
described the participant’s itch. Commonly affected
pruritic areas included the palms (10%), face (5%),
and abdomen (4%). Those affected with pruritus most
frequently (n ¼ 32; 9%) described having more than
10 itchy episodes/day. Patients generally reported
itching during the day (n ¼ 32; 9%) and summertime
(n ¼ 27; 8%); 32 (11%) reported constant itching.
Pruritus was associated with a decreased QOL.
Pruritus-related QOL questionnaire was most affected
by the participant statement ‘‘My skin hurts because of
my itchy skin condition’’ (highest mean score
2.86  1.73) followed by ‘‘I need to scratch my itchy
skin condition’’ (mean score 2.65  1.74), and ‘‘My
itchy skin condition makes me angry or irritable’’
(mean score 2.65  1.63). The duration of pruritus
showed a weakly positive correlation with the func-
tional domains of ‘‘My itchy skin condition makes it
e6
hard to work or do what I enjoy’’ (r ¼ 0.3; P ¼ 0.01)
and ‘‘My itchy skin condition often makes it difficult
to concentrate’’ (r ¼ 0.2; P < 0.05). Mean CD4þ T-cell
count in participants with pruritus was 488  222 cells/
mL (range 26e1536). There was no significant associa-
tion between pruritus and CD4þ T-cell count.
Comment
Two important findings emerged from this study.
First, PLWHA have a high prevalence (20%) of pru-
ritus, which is lower than the results reported by
Blanes et al.3 (31%) and results reported by Kaushik
et al.4 (45%). Second, chronic pruritus is associated
with a decreased QOL in PLWHA.
Our study shows that pruritus is a common
complaint among PLWHA.1,10 Women reported pru-
ritic symptoms more frequently than men, similar to
other reports.2,3 Previous studies have demonstrated
that women tended to complain more of chronic pru-
ritus.11 Participants with pruritus self-reported lower
overall health scores than participants without pruri-
tus. Studies have shown the substantial impact of pru-
ritus on QOL.12
In our study, pain was most commonly associated
with pruritus, likely because of similar mechanisms
by which the body relays both pain and itch signals.13
Pain and itch show similar detrimental impacts on
QOL.12 Palms, face, and abdomen were most
frequently affected. Pruritus was most often felt dur-
ing the day and summertime, when the temperature
is the greatest in Mangalore. A higher skin tem-
perature, as a result of a higher ambient temperature,
may aggravate pruritus.13
The negative impact of itch on participants’ QOL
helps to underscore the importance of assessing
QOL in PLWHA with chronic pruritus and the role
of psychosomatic factors.14 Previous studies have
shown a negative correlation between severity and
chronicity of pruritus and QOL.12 This study
showed that the longer a participant experienced
pruritus, the lower their assessed QOL. This
applied only toward two specific questions that
asked about difficulty in performing enjoyable
tasks and ability to concentrate. Although the cor-
relation was not very strong, the weak positive cor-
relation suggests that pruritus affects multiple
aspects of a patient’s lifestyle.
The mechanisms of pruritus in PLWHA is unclear
and may be related to barrier injury, neuropathy,
eosinophilia, and elevated immunoglobulin E levels
because of shift to Th2 cytokine profile; elevated
serum chemokines (CCL17, CCL26, and CCL27)
has been implicated for HIV-associated eosinophilic
folliculitis.1,15 Patients with dermatological mani-
festations that are associated with pruritus may have
Letters Vol. 55 No. 5 May 2018
decreased CD4þ T-cell counts.7,16 In this study, par-
ticipants with chronic pruritus had a mean CD4þ
T-cell count of 488  222 cells/mL (range
26e1536). No significant association was found be-
tween pruritus and CD4þ T-cell count similar to
other reports.3,4
Our study has many limitations. The cross-sectional
study shows an association of chronic pruritus and
QOL but does not infer a causal relationship. Re-
ported P-values are exploratory with a potential for
inflation of Type 1 error. Specific dermatological diag-
nosis associated with pruritus was not collected. Our
study was performed in 2013 during a period of one
month. Viral loads were not routinely performed
because of financial reasons. The increased availability
of better tolerated antiretroviral drugs could result in
decrease in severity and frequency of pruritus in
PLWHA. Besides sedating antihistamines, treatment
options for chronic pruritus are very limited in our
setting.
In conclusion, chronic pruritus is a common
complaint of PLWHA in India and is associated with
a decreased QOL.
Thomas Xu, MD
Department of Pediatrics
Wake Forest University School of Medicine
Winston-Salem, NC, USA
Avinash K. Shetty, MD
Department of Pediatrics
Wake Forest University School of Medicine
Winston-Salem, NC, USA
E-mail: ashetty@wakehealth.edu
Sanjeev Badiger, MD
Department of Community Medicine
KS Hegde Medical Academy/NITTE University
Mangalore, India
Yiong Huak Chan, PhD
Department of Biostatistics
Yong Loo Lin School of Medicine
National University of Singapore
National University Health System
Singapore
Gil Yosipovitch, MD
Department of Dermatology
Wake Forest School of Medicine
Winston-Salem, NC, USA
https://doi.org/10.1016/j.jpainsymman.2018.01.014
Disclosures and Acknowledgments
The authors thank all the study participants, Hon-
girana, and Dr. Kishore Kumar, DK District, AIDS Con-
trol Officer, Government Wenlock Hospital for his
enthusiastic support and Dr. Suphey C. Chen for
sharing the ItchyQOL questionnaire. The author(s)
declared no potential conflicts of interest with respect
Vol. 55 No. 5 May 2018 Letters
to the research, authorship, and/or publication of this
article.
References
1. Serling SL, Leslie K, Maurer T. Approach to pruritus in
the adult HIV-positive patient. Semin Cutan Med Surg 2011;
30:101e106.
2. Chen SC. Pruritus. Dermatol Clin 2012;30:309e321.
3. Blanes M, Belinchon I, Portilla J, et al. Pruritus in HIV-
infected patients in the era of combination antiretroviral
therapy: a study of its prevalence and causes. Int J STD AIDS
2012;23:255e257.
4. Kaushik SB, Cerci FB, Miracle J, et al. Chronic pruritus
in HIV-positive patients in the southeastern United States:
its prevalence and effect on quality of life. J Am Acad Derma-
tol 2013;70:659e664.
5. National AIDS Control Organization. India HIV estima-
tions. 2015 Technical Report. Ministry of Health and Family
Welfare 2015:1e27. Available from www.naco.gov.in/sites/
default/files/India%20HIV%20Estimations%202015.pdf.
6. Dudala SR. Updated Kuppuswamy’s socioeconomic scale
for 2012. J NTR Univ Health Sci 2013;2:201e202.
7. Goldstein B, Berman B, Sukenik E. Correlation of skin
disorders with CD4 lymphocyte counts in patients with
HIV/AIDS. J Am Acad Dermatol 1997;36:262e264.
8. Weisshaar E, Gieler U, Kupfer J, et al. Questionnaires to
assess chronic itch: a consensus paper of the special interest
group of the international forum on the study of itch. Acta
Derm Venereol 2012;92:493e496.
9. Desai NS, Poindexter GB, Monthrope YM, et al. A pilot
quality of life instrument for pruritus. J Am Acad Dermatol
2008;59:234e244.
10. Zancanaro PC, McGirt LY, Mamelak AJ, Nguyen RH,
Martins CR. Cutaneous manifestations of HIV in the era of
highly active antiretroviral therapy: an institutional urban
clinic experience. J Am Acad Dermatol 2006;54:581e588.
11. St€ander S, Stumpf A, Osada N, et al. Gender differences
in chronic pruritus: women present different morbidity,
more scratch lesions and higher burden. Br J Dermatol
2013;168:1273e1280.
12. Kini SP, DeLong LK, Veledar E, et al. The impact of pru-
ritus on quality of life. Arch Dermatol 2011;147:1153e1156.
13. Yosipovitch G, Goon AJ, Wee J, et al. Itch characteristics
in Chinese patients with atopic dermatitis using a new ques-
tionnaire for these assessments of pruritus. Int J Dermatol
2002;41:212e216.
14. Tey HL, Wallengren J, Yosipovitch G. Psychosomatic fac-
tors in pruritus. Clin Dermatol 2013;31:31e40.
15. Yokobayashi H, Sugaya M, Miyagaki T, et al. Analysis of
serum chemokine levels in patients with HIV-associated
eosinophilic folliculitis. J Eur Acad Dermatol Venereol
2013;27:e212ee216.
16. Farsani TT, Kore S, Nadol P, et al. Etiology and risk fac-
tors associated with a pruritic papular eruption in people
living with HIV in India. J Int AIDS Soc 2013;16:17325.
e7
Botulinum Toxin for Painful
Torticollis in Leptomeningeal
Disease: Case Report
To the Editor
Torticollis is a rare but challenging complication of
cancer with leptomeningeal spread (LMD) or intra-
cranial disease. Although this has been described in the
pediatric literature1e3 with brain-stem gliomas and spinal
cord tumors, it has not been reported to our knowledge in
the adult literature. Cervical dystonia/torticollis in the
general population has a myriad number of causes and
approaches to treatment, but one accepted form of treat-
ment is injection of botulinum toxin.4,5 We had noted a
number of patients in our palliative care unit (PCU)
who had developed torticollis seemingly related to LMD
but who had failed to improve with standard therapies,
and who continued to have sustained torticollis through
to death. Based on this experience, in a subsequent
patient with a similar presentation, we elected to trial
moving rapidly to botulinum therapy. We describe the
outcome of a single botulinum toxin injection that af-
forded relief of her otherwise persistent and painful torti-
collis in the following.
Case Report
A 40-year-old woman with advanced lung cancer
presenting predominately as intracranial disease and
LMD was admitted to the PCU after developing a cau-
da equina syndrome from progressive LMD. She was
known to have intracranial metastases treated previ-
ously with surgical resection and radiation as well as
focal radiosurgery. She had known LMD throughout
the spine, brainstem, cerebellum, and encasing cra-
nial nerves in addition to the supratentorial brain.
At the time of admission to PCU, she was noted to
be drowsy, have minimal to no power in her legs,
and have reduced power in both arms. She had evi-
dence of CN XII dysfunction. She remained on
high-dose dexamethasone (16 mg/day) and hydro-
morphone for pain control and metoclopramide for
nausea. Two weeks after admission, she developed se-
vere and unremitting right-facing torticollis.
We had had two similar presentations of sustained
torticollis in patients with known intracranial disease
and LMD in the months preceding this patient’s
admission. In both prior cases, we had attempted
treatment with anticholinergics (diphenhydramine)
and muscle relaxants (baclofen) in addition to with-
drawing all dopamine antagonists. Both patients were
already on benzodiazepines (clobazam) for seizure
prevention. Neither patient improved with these ther-
apies, both continuing to have sustained and painful