Symptom management and self-care for peripheral neuropathyin HIV/AIDS

P. K. NICHOLAS1, J. K. KEMPPAINEN2, G. E. CANAVAL3, I. B. CORLESS1,

E. F. SEFCIK4, K. M. NOKES5, C. A. BAIN6, K. M. KIRKSEY7, L. SANZERO

ELLER8, P. J. DOLE9, M. J. HAMILTON4, C. L. COLEMAN10, W. L. HOLZEMER6,

N. R. REYNOLDS11, C. J. PORTILLO6, E. H. BUNCH12, D. J. WANTLAND6,

J. VOSS13, R. PHILLIPS5, Y.-F. TSAI14, M. RIVERO MENDEZ15, T. G. LINDGREN6,

S. M. DAVIS16, & D. M. GALLAGHER17

1Brigham and Women’s Hospital, MGH Institute of Health Professions, Boston, MA, USA, 2University of North Carolina,

Wilmington, NC, USA, 3Universidad del Valle, Cali, Colombia, 4Texas A & M University, Corpus Christi, TX, USA,5Hunter College, City University of New York, New York City, NY, USA, 6University of California, San Francisco, San

Francisco, CA, USA, 7Ben Taub General Hospital, Houston, TX, USA, 8Rutgers University, Newark, NJ, USA,9Greenwich House, New York City, NY, USA, 10University of Pennsylvania, Philadelphia, PA, USA, 11Ohio State

University, Columbus, OH, USA, 12University of Oslo, Oslo, Norway, 13National Institutes of Health/National Institute of

Neuromuscular Diseases Section, Bethesda, MD, USA, 14Chang Gung University, Toa-Yuan, Taiwan, 15University of Puerto

Rico, San Juan, Puerto Rico, 16Massachusetts General Hospital, Boston, MA, USA, and 17New England AIDS Education

and Training Center, Boston, MA, USA

AbstractPeripheral neuropathy is the most common neurological complication in HIV and is often associated with antiretroviraltherapy. As part of a larger study on self-care for symptoms in HIV disease, this study analyzed the prevalence andcharacteristics of peripheral neuropathy in HIV disease, sociodemographic and disease-related correlates and self-carestrategies. A convenience sample of 1,217 respondents was recruited from data collection sites in several US cities, PuertoRico, Colombia and Taiwan. Results of the study indicated that respondents with peripheral neuropathy (n�/450) identified20 self-care behaviors including complementary therapies, use of medications, exercise and rest and/or elevation ofextremities. Ratings of frequency and effectiveness were also included. An activities checklist summarized into fivecategories of self-care behaviors including activities/thoughts, exercise, medications, complementary therapies andsubstance was used to determine self-care behaviors. Taking a hot bath was the most frequent strategy used by thosewith peripheral neuropathy (n�/292) and received the highest overall rating of effectiveness of any self-managementstrategies included in this study at 8.1 (scale 1�10). Other self-care strategies to manage this symptom included: staying offthe feet (n�/258), rubbing the feet with cream (n�/177), elevating the feet (n�/236), walking (n�/262), prescribed anti-epileptic agent (n�/80), prescribed analgesics (n�/84), over-the-counter medications (n�/123), vitamin B (n�/122),calcium supplements (n�/72), magnesium (n�/48), massage (n�/156), acupuncture (n�/43), reflexology (n�/23) andmeditation (n�/80). Several behaviors that are often deemed unhealthy were included among the strategies reported toalleviate peripheral neuropathy including use of marijuana (n�/67), cigarette smoking (n�/139), drinking alcohol (n�/81)and street drugs (n�/30).

Introduction

Peripheral neuropathy is the most common neuro-

logical complication in HIV disease (Dorsey &

Morton, 2006; Ferrari et al., 2006). Involvement

of the central or peripheral nervous system has been

found in 30�63% of patients across the spectrum

of HIV (Hall et al., 1991; Lichtenstein et al., 2005;

Parry et al., 1997; Price, 1996; Schifitto et al., 2002,

2005; Swanson et al., 1998) and is often associated

with antiretroviral therapy (Moore et al., 2000;

Moyle & Sadler, 1998; Schifitto et al., 2002;

Schooley, 1999; Simpson & Olney, 1992; Singer

et al., 1993; Swanson et al., 1998). Few interna-

tional studies exist that examine the global

prevalence of neuropathy, however some studies

(Nakagawa et al., 1997; Parry et al., 1997; Saarto

& Wiffen, 2005) indicate that the pattern and

Correspondence: Patrice K. Nicholas, DNSc., MPH., APRN., BC., MGH Institute of Health Professions, Graduate Program in Nursing,

36 1st Ave, Boston, MA 02129, USA. Tel: �/1 (617) 726 1872. Fax: �/1 (617) 724 6321. E-mail: pnicholas@mghihp.edu

AIDS Care, February 2007; 19(2): 179�189

ISSN 0954-0121 print/ISSN 1360-0451 online # 2007 Taylor & Francis

DOI: 10.1080/09540120600971083

frequency of neuropathies are similar to those

reported from other continents. Research on neuro-

pathy in the pediatric population suggests that the

condition is under-recognized and under-reported

by clinicians (Floeter et al., 1997). In one study in

Brazil, peripheral neuropathy was found to occur

in one third of HIV-infected children but appeared

to have less severe features than the distal

sensory polyneuropathy described in adults (Araujo

et al., 2000).

Background

HIV-associated peripheral neuropathy is known to

exist in at least six patterns, with distal symmetrical

polyneuropathy (DSPN) as the most frequently

occurring type. Other patterns of peripheral

neuropathy include inflammatory demyelinating

polyneuropathy, progressive polyradiculopathy,

mononeuropathy multiplex, autonomic neuropathy

and diffuse infiltrative lymphocytosis syndrome

(Wulf et al., 2000). Lichtenstein et al. and the HIV

Outpatient Study Cohort (2005) found that of 2,515

patients in the sample, 329 (13.1%) received a

diagnosis of peripheral neuropathy.

Overview of DSPN

Distal symmetrical polyneuropathy is known to

occur mainly in patients with advanced immuno-

suppression and may also occur due to neurotoxicity

of antiretroviral therapy (Harrison & McArthur,

1995; Lichtenstein et al., 2005; Schifitto et al.,

2002, 2005; Swanson et al., 1998). Distal symme-

trical polyneuropathy can be a direct sequela of HIV

infection or a result of treatment with neurotoxic

drugs, particularly didanosine, dideoxycytidine,

stavudine, dapsone, metronidazole, isoniazid,

vincristine, pyridoxine and thalidomide (Verma

et al., 2004; Wulf et al., 2000). Recent literature

suggests that highly active antiretroviral therapy

(HAART) has changed the course of HIV-associated

DSPN (Schifitto et al., 2005) and that since

HAART was introduced, the incidence of peripheral

neuropathy has decreased (Lichtenstein et al.,

2004). In earlier studies, DSPN was found to occur

across the spectrum of HIV disease and its incidence

was increasing, most likely due to prolonged survival

rates, incidence of co-morbid conditions and the

development of HAART (Dal Pan & Mc Arthur,

1996; Senneff, 1999; Simpson & Olney, 1992;

Simpson & Tagliati, 1994; Simpson et al., 1994;

Swanson et al., 1998). In their review, Estanislao

et al. (2005) indicate that distal symmetric poly-

neuropathy is the most common form of peripheral

neuropathy in both HIV and hepatitis C mono-

infection (HCV); these authors suggest that further

study is needed to examine whether additive or

synergistic effects exist for those with co-infection

with HIV- and HCV-related neuropathy.

Role of antiretroviral medications in DSPN

Recent research indicates that HIV nucleoside

reverse transcriptase inhibitors (NRTIs) can cause

peripheral neuropathy that is a result of mitochon-

drial injury. Gerschenson and Brinkman (2004)

suggest that long-term exposure to antiretroviral

therapy and HIV exposure cause mitochondrial

toxicities, such as myopathies, neuropathy and other

complications. Futher, these authors suggest that

although mitochondrial pathogenesis has been pos-

tulated to be due exclusively to ‘NRTI-induced

inhibition DNA polymerase-gamma; it is now ap-

parent that the etiology is more complex involving

many effects and HIV per se’. Hulgan et al. (2005)

found that mitochondrial haplogroup T was more

frequent in subjects who developed peripheral neu-

ropathy. Among 137 white subjects randomized to

receive ddI plus d4T, 20.8% of those who developed

peripheral neuropathy belonged to mitochondrial

haplogroup T compared to 4.5% of control subjects;

independent predictors of peripheral neuropathy

were randomization to receive ddI plus d4T, older

age and mitochondrial haplogroup T (Hulgan et al.,

2005).

Clinical assessment of DSPN

Recently, clinical tools aimed at measuring HIV-

related neuropathy have been developed (Cherry et

al., 2005; Ellis et al., 2005; McArthur, 1998;

Venkataramana et al., 2005). The Brief Neuropathy

Screening Tool (BNST) was found to accurately

detect those HIV-infected individuals with the great-

est degree of neuropathy. The BNST is also viewed

as a valid neuropathy screening tool for use in HIV

infection and is simple enough to be applicable in

resource-limited settings (Cherry et al., 2005). Ellis

and associates (2005) found that the Brief Peripheral

Neuropathy Screen was a useful clinical tool for

measuring the neurological deficits related to neuro-

pathy. Venkataramana et al. (2005) found that a

subjective peripheral neuropathy screen was a reli-

able and valid tool for measurement of DSPN in

HIV disease.

Quality of life and symptom management of DSPN

Pandya et al. (2005) found that HIV-related neuro-

logical syndromes, including neuropathy, signifi-

cantly reduce quality of life. Griswold et al. (2005)

examined coping strategies of HIV patients with

peripheral neuropathy and found that these

180 P. K. Nicholas et al.

strategies may differ according to age, gender

and ethnic background in those living with HIV.

Griswold and associates (2005) found that catastro-

phizing as a negative coping strategy predicted

distress and interference with functioning in their

sample.

Symptom management research on HIV-related

neuropathy suggests that selecting appropriate phar-

macologic interventions is necessary (Verma et al.,

2004; 2005) and that self-management strategies are

important methods for managing neuropathy symp-

toms (Nicholas et al., 2002). Herbal medicines have

also been found to be widely used complementary

therapies in patients with HIV/AIDS and neuropathy

(Liu et al., 2005), although insufficient evidence

exists to support the use of herbal medicines in HIV/

AIDS patients. Finally, recent literature suggests that

substance use disorders are associated with higher

rates of DSPN (Berger et al., 1999; Morgello et al.,

2004) and that cannabis use is common in patients

with HIV disease (Woolridge et al., 2005). Thus, the

present study contributes to the limited body of

research available on the prevalence, characteristics

and self-care behaviors for DSPN.

Conceptual model

Theoretical framework. The theoretical perspective

guiding this analysis integrates the emotion regula-

tion principles identified by Leventhal’s common-

sense model perspective of health threat regulation

with those delineated in Scheier and Carver’s general

model of behavior self-regulation (Cameron, 2003).

Peripheral neuropathy is a common aspect of illness

in HIV disease, which can affect many aspects of

behavioral self-regulation or self-management across

the trajectory of illness. Although neuropathy is a

physiological phenomenon, it also represents

a perceptual process that may lead to the experience

of a health threat thus leading the individual

experiencing neuropathy to seek out behavioral

self-regulation through self-care.

Purpose of the study

As part of a larger study conducted by the UCSF

International HIV/AIDS Nursing Research Network

on self-care for symptoms in HIV disease, the

purpose of the present study was to analyze

the prevalence and characteristics of peripheral

neuropathy in HIV disease, the self-care strategies

and nature of the symptoms in this sample. A

descriptive quantitative design was employed for

the study. SPSS-PC version 11.0 was used to analyze

the descriptive data and categorize the symptom

management data. Quantitative methods were used

to analyze and summarize symptom management

data related to peripheral neuropathy.

Methods

Design and settings

This descriptive study used a cross-sectional design

to examine self-reported symptoms and self-care

behaviors in a sample of persons with HIV/AIDS.

Data were collected in 12 cities in eight states in the

US, Puerto Rico and three international sites.

The data collection sites were California (San

Francisco, Fresno), Massachusetts (Boston, Fall

River), New York (New York City), New Jersey

(Newark), North Carolina (Wilmington), Ohio

(Columbus), Texas (Corpus Christi, Harlingen,

Temple), Virginia (Richmond), Puerto Rico (San

Juan), Norway (Oslo), Taiwan (Taipei and Tao-

Yuan), and Colombia (Cali). The national and

international settings included community-based

organizations, university-based AIDS clinics, private

practices, public and for-profit hospitals, residential

and day care facilities and home care services.

Institutional Review Board approval was obtained

at each study site. Certificates of Confidentiality

were obtained when requested by institutional re-

view boards at specific sites.

Sample

The total sample included 1,217 HIV-infected men

and women from the US, the Commonwealth of

Puerto Rico, Taiwan, Norway and Colombia. Of the

larger sample of 1,217 participants, 450 individuals

reported experiencing peripheral neuropathy. Inclu-

sion criteria for the study were that participants had

to be (a) at least 18 years of age, (b) receiving AIDS-

related care at their respective facility, (c) able to

provide informed consent and (d) English, Spanish

or Chinese-speaking.

Instrumentation

The instruments used in the study included a

demographic survey, the Revised Sign and Symptom

Checklist for Persons with HIV Disease (SSC-

HIVrev) and the HIV/AIDS Targeted Quality of

Life (HAT-QOL) instrument. All instruments were

forward- and back-translated from the original

English-language instruments into Spanish and Chi-

nese versions and pilot tested.

Demographic survey. A survey booklet was used for

collecting information on personal and environmen-

tal characteristics including age, gender, years of

education, whether participants had adequate in-

come, whether they had children and other variables.

Peripheral neuropathy 181

In addition, data on biological/physiological factors,

such as whether participants had received an AIDS

diagnosis or had any comorbidities, were also col-

lected.

The revised sign and symptom checklist for persons with

HIV disease (SSC-HIVrev). The SCC-HIVrev

checklist is comprised of 64 items that capture the

frequency and severity of HIV signs and symptoms

that the participants were experiencing on a given

day. Items are rated on a 3-point Likert scale of

1�/mild, 2�/moderate or 3�/severe. Calculations

include the total number of symptoms (range�/0�64) and the mean severity of symptoms (range�/1�3). Reliability and validity of the instrument have

been previously reported for a US sample (Holzemer

et al., 2001). Likewise, a Chinese version of the

instrument has been tested with a Taiwanese sample

(Tsai et al., 2003). Slightly different Spanish ver-

sions of the SSC-HIVrev were used in Texas for a

predominately Mexican population, in San Juan for

a Puerto Rican population and in Cali for a

Colombian population. Researchers at each site

confirmed the content validity of the versions.

HIV/AIDS targets quality of life (HAT-QOL). The

HAT-QOL is a self-report scale that measures overall

functioning, life satisfaction, health worries, financial

worries and disclosure. The nine-dimensional scale

includes items that were initially tested in a sample of

201 HIV-seropositive persons. Only five of the nine

dimensions were used in this study: (a) overall

function, (b) financial worries, (c) health worries,

(d) disclosure worries and (e) life satisfaction. These

five dimensions exhibited favorable psychometric

properties including adequate internal consistency

and evidence of construct validity (Holmes & Shea,

1997; 1999). Evidence for the construct validity of

this instrument was provided by items that directly

reflected quality of life derived from reports by HIV-

positive persons. Items were rated on a 5-point scale

ranging from 1�/low to 5�/high. We computed

dimensional scores for the HAT-QOL scales by

summing all of the item responses in each dimen-

sion. Negatively worded items in the instrument

were reversed scored. Higher scores indicated more

favorable outcomes. The Cronbach’s alpha reliability

coefficient was above 0.80 for each scale, indicating

highly favorable internal consistency across items

(Nunnally & Bernstein, 1994).

Data analysis

Responses to the questionnaires were entered

into Statistical Package for the Social Sciences for

Windows Version software. Descriptive statistics (i.e.

means, standard deviations, frequencies and per-

cents) were used to examine demographic character-

istics of the sample, severity of illness, quality of life

and characteristics of peripheral neuropathy.

Results

Participants were recruited from data collection sites

in Boston, Massachusetts (n�/140; 11.5% of sam-

ple); San Francisco, California (n�/ 61; 5.0%);

Fresno, California (n�/ 80; 6.6%); Wilmington,

North Carolina (n�/ 34; 2.8%); Richmond, Virginia

(n�/ 90; 7.4%); Fall River, Massachusetts (n�/ 40;

3.3%); New York (two sites) (n�/ 84; 6.9% and n�/

43; 3.5%); Paterson, New Jersey (n�/ 92; 7.6%),

Corpus Christi, Texas (three sites) (n�/ 41; 3.4%,

n�/ 64; 5.3% and n�/ 50; 4.1%), Columbus, Ohio

(two sites) (n�/ 42; 3.5% and n�/ 15; 1.2%); Puerto

Rico (n�/ 44; 3.6%); Colombia (n�/102; 8.4%);

Taiwan (n�/ 118; 9.7%) and Norway (n�/ 77;

6.3%). In the broader study, a convenience sample

of 1,217 participants with HIV/AIDS was asked if

they experienced symptoms during the past week. If

yes, they were asked to check the activities on a 20-

item self-care activity checklist derived from previous

work. Survey questions were summarized into five

categories of self-care behaviors, including activities/

thoughts, exercise, medications, complementary

therapies and substance use. In addition to rating

self-care strategies, participants were also asked to

rate the frequency (daily, weekly, monthly) and

effectiveness of the self-care activity on a scale of

1�10 with 1�/very poor and 10�/excellent. In

addition to completing the self-care survey, partici-

pants were asked to rate the frequency, intensity and

impact of neuropathy symptoms on daily life on a

ten-point scale.

Neuropathy, the fourth most frequently identi-

fied symptom, was reported by 450 (36.9%)

participants. This subset of study participants in-

cluded 316 males (70.2%), 129 females (28.7%) and

three transgender (0.7%) with a mean age of 43.5

years (SD�/9.0). The ethnically diverse sample

included participants from Colombia (n�/ 27; 6.0%

of the total sample who reported neuropathy),

Norway (n�/ 38; 8.4% of total sample reporting

neuropathy), Puerto Rico (n�/14; 3.1% of total

sample reporting neuropathy), Taiwan (n�/ 44;

9.8% of total sample who reported neuropathy)

and the US (n�/ 327; 72.6% of total sample report-

ing neuropathy). Health status indicators included

an average of 11.1 years (SD�/5.8) since HIV-

positive diagnosis, with 41.6% of the sample who

reported neuropathy also self-reporting a diagnosis

of AIDS. Nearly eighty percent (77.9%) of those

with neuropathy were currently taking HIV medica-

tions, with the average length of time on HIV

medications reported as 8.9 years (SD�/4.7).

182 P. K. Nicholas et al.

Thirty-eight percent of the sample reported an

undetectable viral load. Sixty percent of the sample

had an education level of high school or less and

48% had at least one child living at home. The most

common co-existing medical or psychiatric disorders

reported were depression, hepatitis and hyperten-

sion. Over 14% (n�/ 64) indicated that they were

currently treated for depression. Nearly 71%

reported that they did not work for pay and only

19% reported having an adequate income. Twenty-

six percent of the sample reported a history of

injecting illicit drugs and the majority of the sample

indicated a history of substance use over the past six

months (see Table I).

For the total sample, neuropathy was experienced

a mean score of 4.9 days/week (SD 2.2). When

participants were also asked to rate the level of

impact of neuropathy on their lives on a scale of

1�10, they reported a mean score of 5.5 (SD�/3.3).

On the variable of ‘intensity’ related to neuropathy,

respondents reported a mean rating of 5.7 on a scale

of 1�10 (SD�/2.9) with 1�/very low and 10�/very

high. A self-rating of physical condition was

6.1 (SD�/2.3), psychological support was 6.3

(SD�/2.4) and the rating of social support at 6.8

(SD�/2.7) (each on scale of 1�10).

Across countries (US, Commonwealth of Puerto

Rico, Colombia, Norway, Taiwan), self-rating of

neuropathy varied significantly. Participants in

Norway had the highest reports of neuropathy

(50%), while those in the US reported similar rates

of neuropathy (36.2%) to those in Taiwan (37.3%).

For those in Colombia, 26.7% reported neuropathy

and participants from Puerto Rico reported the

lowest rate of neuropathy (10%). Thus self-report

of neuropathy differed significantly across countries

(p B/0.000) with 50% of respondents in Norway

indicating the presence of neuropathy and only 10%

in Puerto Rico reporting neuropathy. Participants in

Puerto Rico did, however, report significantly

increased rates of neuropathy intensity (7.1 for

Puerto Rico versus 6.5 for Colombia, 6.0 for US,

4.8 for Norway and 2.5 for Taiwan, p B/0.000) and

impact (7.3 for Puerto Rico versus 5.6 for Colombia,

5.9 for US, 4.3 for Norway and 2.7 for Taiwan,

p B/0.000) (see Table II).

Table III presents data on the frequency and

effectiveness of self-care strategies for the total

sample who reported neuropathy. The most com-

monly used strategies for managing neuropathy

included taking a hot bath (n�/260; 66%: 46.0%

daily, 7.3% monthly), walking (n�/ 234; 60.0%:

82.3%, daily, 9.2% monthly), staying off of feet

(n�/ 233; 59%: 78.9% daily, 78.9% monthly), eleva-

tion of feet (n�/ 214; 57%: 82.9%, daily, 15.1%

monthly) and rubbing the feet with cream (n�/ 159;

47%: 76.5% daily, 21.6% monthly).

Table I. Demographic data (n�/ 450).

Variable Range Mean SD Frequency

Age 21�84 years 43.58 years 9.0 439

CD4 Count (self report) 0�4800 397/mm3 364/mm3 315

Length of HIV (self report) 1�25 years 11.1 years 5.8 years 433

Length of AIDS diagnosis (self report) 2�23 years 8.9 years 4.7 years 187

Sex n (%)

Male 316 (70.2)

Female 129 (28.7)

Transgender 3 (0.70)

Ethnicity n (%)

African American/black 161 (35.8)

Caucasian 130 (28.9)

Hispanic/Latino 101 (22.4)

Asian/Pacific Islander 44 (9.8)

Native American Indian 6 (1.3)

Other 4 (0.9)

Risk Factors n (%)

Sex with man with HIV 279 (71.2)

Sharing needles 93 (26.1)

Sex with woman with HIV 89 (25.9)

Don’t know 58 (18.1)

Blood transfusion 21 (6.5)

Other 15 (4.7)

Income n (%)

Enough 81 (18.2)

Barely adequate 227 (51.1)

Current injection drug user 136 (30.6)

Peripheral neuropathy 183

Regarding complementary therapies, 42% of the

sample indicated that they used massage (n�/ 144;

41%: 41.7% daily; 33.3% monthly) and 31% used

vitamin B supplements (n�/ 112; 31%: 86.3% daily,

7.8% monthly). Medications used by the partici-

pants included over the counter (n�/ 112; 31%:

54.4% daily, 32.0% monthly), prescribed analgesics

(n�/79; 23%: 77.9% daily, 13.2% monthly) and

prescribed antiepileptics (n�/ 74; 21%: 90.9% daily,

6.1% monthly).

Substance use was a common self-management

strategy used by the sample with 34% (n�/ 118)

indicating that they smoked cigarettes, 21% (n�/ 70)

ingested alcohol, 18% (n�/ 59) used marijuana and

9% (n�/ 28) indicating use of street drugs.

The category that received the highest overall

rating of effectiveness on a scale of 1�10 was using

complementary therapies. Within that category,

reflexology received the highest rating at 7.5 (SD�/

2.0). Meditation received an effectiveness rating of

7.1 (SD�/2.1) while using massage to self-manage

neuropathy symptoms was rated 6.8 (SD�/2.3). The

most effective strategies identified within the ‘activ-

ities’ category included elevating the feet at

6.5 (SD�/2.5) and taking a hot bath at 6.5 (SD�/

2.2). Participants rated the walking with an

Table II. Comparison of neuropathy by country (n�/ 450).

Country

Total sample

(n�/ 450)

Colombia

(n�/ 27)

Norway

(n�/ 38)

Puerto Rico

(n�/ 14)

Taiwan

(n�/ 44) US (n�/ 327) x2

Percent neuropathy 36.9 26.7 50.0 10 37.3 36.2 p B/0.000

Days/week 4.9 (SD 2.2) 4.8 (SD 2.3) 5.0 (SD 2.3) 4.7 (SD 2.0) 3.1 (SD 1.6) 5.1 (SD 2.1) p B/0.000

Neuropathy impact

(scale 1�10)

5.5 (SD 3.3) 5.6 (SD 3.1) 4.3 (SD 2.8) 7.3 (SD 3.2) 2.7 (SD 1.5) 5.9 (SD 3.3) p B/0.000

Neuropathy intensity

(scale 1�10)

5.7 (SD 2.9) 6.5 (SD 2.4) 4.8 (SD 2.4) 7.1 (SD 2.9) 2.5 (SD 1.3) 6.0 (SD 2.9) p B/0.000

Self-rating of physical

condition (scale 1�10)

6.1 (SD 2.3) 7.1 (SD 2.6) 6.5 (SD 1.8) 7.1 (SD 2.1) 5.5 (SD 2.6) 6.1 (SD 2.3) p B/0.002

Self-rating of psychological

condition (scale 1�10)

6.3 (SD 2.4) 6.7 (SD 2.2) 6.3 (SD 2.4) 8.2 (SD 1.6) 5.7 (SD 2.9) 6.3 (SD 2.4) p B/0.000

Self-rating of social

support (scale 1�10)

6.8 (SD 2.7) 7.0 (SD 2.6) 6.1 (SD 3.0) 8.7 (SD 1.9) 6.5 (SD 2.9) 6.8 (SD 2.7) p B/0.000

Table III. Frequency and effect of neuropathy self-management strategies for the total sample (n�/ 450).

Self-care strategy n % Daily (%) Weekly (%) Monthly (%)

Rating of effectiveness

(scale 1�10)

Activities

Take hot bath 260 66 46.0 07.3 00.4 6.45

Stay off of feet 233 59 78.9 18.3 02.8 6.30

Elevate feet 214 57 82.9 15.1 02.0 6.53

Rub feet with cream 159 47 76.5 21.6 02.0 6.30

Exercise

Walking 234 60 82.3 16.8 00.9 5.93

Medications

Over-the-counter medications 112 31 54.4 32.0 15.5 5.87

Prescribed analgesics 79 23 77.9 13.2 08.8 6.41

Prescribed antiepileptics 74 21 90.9 06.1 03.0 6.85

Complementary therapies

Massage 144 41 41.7 33.3 25.0 6.84

B6, B12, B complex 112 31 86.3 07.8 05.9 6.24

Meditation 68 20 65.5 25.9 05.2 7.08

Calcium 65 19 80.0 16.7 03.3 6.33

Magnesium 44 13 87.5 10.0 02.5 6.25

Accupuncture 38 12 20.6 41.2 38.2 6.81

Reflexology 19 6 46.7 26.7 26.7 7.53

Substance use

Cigarettes 118 34 92.4 06.7 00.0 4.67

Alcohol 70 21 33.9 41.9 22.6 4.98

Marijuana 59 18 43.4 28.3 28.3 6.82

Street drugs 28 9 52.4 33.3 14.3 5.04

184 P. K. Nicholas et al.

effectiveness rating of 5.93 (SD�/2.4) while using

prescribed antiepileptic medications to manage neu-

ropathy symptoms was rated at 6.85 (SD�/2.1).

Significant gender differences were found on self-

care strategies related to neuropathy. Female parti-

cipants were more likely to elevate the feet

(72% versus 51%). Women were significantly more

likely than men to use over-the-counter medications

(37% versus 29%) and prescribed anti-epileptic

medications (28% versus 18%). Comparisons by

race/ethnicity indicated that Hispanic and Asian

participants were significantly less likely to report

substance use for neuropathy. Asian participants

reported the highest percentage (57%) of comple-

mentary therapy use (massage) for neuropathy

symptoms. African-American participants were

more likely to report taking a hot bath (77%),

elevating the feet (60%) or walking (62%) as

self-care strategies for management of neuropathy

symptoms (see Table IV).

Self-care strategies for managing neuropathy var-

ied by country. Participants living in Colombia

reported elevating the feet (56%), rubbing cream

on the feet (56%) and staying off the feet (48%)

most often. For participants from Norway, walking

(68%), hot bath (63%) and substance use (using

alcohol; 56%) were the most frequent self-manage-

ment strategies. Eighty-three percent of those in

Puerto Rico used the strategy of elevating the feet,

followed by hot bath (n�/ 69%), staying off the feet

(67%) and rubbing the feet with cream (67%).

Participants from Taiwan most frequently reported

massage (57%), hot bath (55%) and staying off the

feet (55%). For US participants, hot bath (70%),

staying off the feet (63%), walking (65%) and

elevating the feet (63%) were the most frequently

used strategies (see Table V).

Discussion

This study reported the self-management strategies

used by a sample of participants with neuropathy

related to HIV disease. As part of a larger study on

symptoms and self-care strategies, these results

indicated that neuropathy is a common symptom

across countries, including Colombia, Norway, Tai-

wan, the Commonwealth of Puerto Rico and the

US. Participants reported a variety of activities,

exercise, medications, complementary therapies

and substance use behaviors (some potentially

harmful) to limit HIV-related neuropathy. The

frequency and effectiveness of self-management

strategies varied across countries. These findings

are consistent with other recent studies (Berger

et al., 1999; Morgello et al., 2004; Woolridge

et al., 2005) that suggest that neuropathy is a

Table IV. Neuropathy self-care strategies by gender and race/ethnicity (n�/ 445).

Gender Race/Ethnicity

Self-care strategy

Women

n�/ 129 (%)

Men

n�/ 316 (%)

Asian

n�/ 44 (%)

African American

n�/ 161 (%)

Hispanic

n�/ 101 (%)

White

n�/ 130 (%)

Activities n n n

Taking hot bath 83 (74) 175 (63) 24 (55) 108 (77) 46 (52) 72 (66)

Elevate feet 78 (72) 135 (51) 6 (14) 76 (60) 58 (68) 67 (60)

Stay off feet 77 (68) 154 (56) 24 (55) 77 (58) 56 (63) 69 (59)

Rub feet with cream 55 (59) 103 (43) 4 (9) 71 (58) 43 (51) 35 (44)

Exercise

Walking 63 (59) 171 (62) 17 (39) 80 (62) 46 (53) 83 (70)

Medications

Over-the-counter medications 36 (37) 75 (29) 0 (0) 38 (33) 27 (33) 43 (40)

Prescription anti-epileptics 27 (28) 45 (18) 0 (0) 25 (23) 16 (20) 30 (28)

Prescription analgesics 21 (23) 58 (23) 1 (3) 28 (25) 17 (22) 26 (25)

Complementary therapies

Massage 45 (48) 98 (39) 25 (57) 42 (39) 26 (32) 45 (43)

B6, B12, B complex 32 (33) 79 (31) 2 (5) 41 (35) 23 (28) 40 (38)

Calcium 18 (20) 47 (19) 1 (2) 21 (19) 15 (19) 23 (24)

Meditation 16 (18) 52 (21) 3 (7) 27 (26) 17 (22) 16 (16)

Acupuncture 8 (10) 30 (12) 0 (0) 9 (9) 9 (11) 16 (16)

Magnesium 6 (7) 38 (15) 0 (0) 12 (12) 9 (11) 20 (20)

Reflexology 3 (4) 16 (7) 0 (0) 8 (8) 4 (5) 5 (5)

Substance use

Cigarettes 31 (32) 86 (34) 0 (0) 50 (43) 17 (22) 46 (42)

Alcohol 18 (20) 51 (21) 0 (0) 33 (30) 7 (9) 27 (28)

Marijuana 12 (14) 47 (19) 0 (0) 19 (19) 13 (16) 21 (21)

Street drugs 7 (8) 21 (9) 0 (0) 16 (15) 2 (3) 8 (8)

Peripheral neuropathy 185

Table V. Frequency and effectiveness of neuropathy self-management strategies by country (n�/ 450).

Colombia (n�/ 27) Norway (n�/ 38) Puerto Rico (n�/ 14) Taiwan (n�/ 44) US (n�/ 326)

Strategy

Frequency

n (%)

Effectiveness

rating

(scale 1�10) Strategy

Frequency

n (%)

Effectiveness

rating

(scale 1�10) Strategy

Frequency

n (%)

Effectiveness

rating

(scale 1�10) Strategy

Frequency

n (%)

Effectiveness

rating

(scale 1�10) Strategy

Frequency

n (%)

Effectiveness

rating

(scale 1�10)

Elevate feet 14 (56) 7.6 Walk 26 (68) 5.5 Elevate feet 10 (83) 9.3 Massage 25 (57) 4.0 Hot bath 194 (70) 6.5

Rub cream

on feet

14 (56) 8.4 Hot bath 22 (63) 6.8 Hot bath 9 (69) 8.8 Hot bath 24 (55) 4.3 Stay off feet 175 (63) 6.2

Stay off of

feet

12 (48) 8.1 Alcohol 19 (56) 4.4 Stay off feet 8 (67) 9.2 Stay off of

feet

24 (55) 4.6 Walk 174 (65) 6.0

Hot bath 10 (39) 7.7 Massage 19 (56) 7.5 Rub feet with

cream

8 (67) 9.1 Walk 17 (39) 4.5 Elevate feet 165 (63) 6.3

Walk 9 (35) 5.6 Elevate feet 18 (53) 6.0 Walk 7 (54) 9.1 Elevate feet 6 (14) 5.7 Rub feet with

cream

132 (51) 5.9

Massage 9 (36) 8.6 B6, B12,

B complex

16 (44) 5.4 Massage 6 (46) 9.0 Rub feet with

cream

4 (9) 6.5 Cigarettes 100 (42) 4.7

Over-the-

counter

medications

27 (66) 6.28 Cigarettes 14 (42) 3.8 Calcium 6 (46) 8.6 Meditation 3 (7) 6.0 Over the

counter

drugs

92 (38) 5.7

Prescribed

analgesics

4 (16) 7.3 Stay off of feet 13 (39) 6.5 Antiepileptic 5 (42) 10.0 B6, B12, B

complex

2 (5) 5.5 B6, B12, B

complex

85 (35) 6.2

B6, B12, B

complex

4 (16) 6.3 Acupuncture 12 (35) 5.8 Over-the-

counter

medications

4 (36) 7.3 Prescribed

analgesic

1 (2) 0.0 Massage 85 (37) 7.3

Meditation 2 (8) 6.0 Over-the-

counter

medications

10 (31) 5.7 B6, B12, B

complex

4 (36) 9.0 Prescribed

antiepileptic

1 (2) 0.0 Prescribed

antiepileptic

66 (28) 6.8

Reflexology 1 (4) 7.0 Calcium 10 (29) 4.4 Magnesium 4 (36) 6.3 Calcium 1 (2) 2.0 Prescribed

analgesic

65 (28) 6.3

Acupuncture 1 (4) 6.0 Magnesium 9 (26) 4.4 Meditation 4 (31) 5.0 Acupuncture 0 (0) 0.0 Meditation 52 (23%) 7.4

Marijuana 1 (4) 10.0 Analgesics 7 (22) 6.6 Cigarettes 4 (29) 6.3 Over-the-

counter

medications

0 (0) 0.0 Marijuana 5.2 (23) 6.8

Calcium 1 (4) 8.0 Meditation 6 (17 6.4 Alcohol 2 (15) 5.5 Magnesium 0 (0) 0.0 Alcohol 48 (22) 5.0

Prescribed

antiepileptic

1 (4) 1.0 Marijuana 5 (15) 5.0 Analgesics 2 (18) 6.5 Cigarettes 0 (0) 0.0 Calcium 47 (21) 6.7

Alcohol 1 (4) 10.0 Street drugs 3 (9) 3.0 Acupuncture 2 (17) 5.0 Alcohol 0 (0) 0.0 Magnesium 31 (14) 6.7

Magnesium 0 (0) 0.0 Reflexology 2 (6) 6.0 Reflexology 1 (8) 0.0 Reflexology 0 (0) 0.0 Street drugs 25 (12) 5.1

Cigarettes 0 (0) 0.0 Antiepileptic 2 (6) 1.0 Marijuana 0 (0) 0.0 Marijuana 0 (0) 0.0 Acupuncture 23 (11) 7.4

Street drugs 0 (0) 0.0 Rub feet 0 (0) 0.00 Street drugs 0 (0) 0.0 Street drugs 0 (0) 0.0 Reflexology 15 (7) 7.8

186

P.K

.N

ichola

set

al.

common and complex symptom affecting those

living with HIV and that substance use is a common

self-care behavior.

Self-care strategies for neuropathy varied signifi-

cantly by country. The most frequently used self-

care measures reported by the participants from

Norway included walking, hot bath, alcohol use and

massage. Despite the potentially damaging effect of

alcohol related to neuropathy, many participants

indicated alcohol use as a self-care strategy. Alcohol

use is a potentially harmful self-care strategy for

neuropathy and may contribute to further

neuropathy for those with HIV disease. Additional

education about alcohol use for HIV-positive indivi-

duals may be needed in Norway and other countries.

The five most frequently used strategies in Taiwan

included massage, hot bath, staying off the feet,

walking and elevating the feet. Among the US

participants, the most frequently used self-care

strategies included hot bath, staying off the feet,

walking, elevating the feet and rubbing the feet with

cream. Over 40% (n�/ 100; 42%) of the US parti-

cipants also indicated that they smoked cigarettes to

self-manage neuropathy*another potentially harm-

ful self-care behavior. With the exception of partici-

pants from Taiwan, using over-the-counter

medications was a behavior used by participants in

several countries to manage neuropathy (Colombia,

66%; Norway, 31%; Puerto Rico, 36%; US, 38%).

In addition to receiving the highest frequency

rates, the neuropathy management strategy of taking

a hot bath received high ratings of effectiveness on a

scale of 1�10 for Colombia (rating of 7.7) and

Puerto Rico (rating of 8.8) but only moderate ratings

of effectiveness for participants from Norway (rating

of 6.8), the US (rating of 6.5) and Taiwan (rating

of 4.3).

A second self-care strategy, massage, also received

high frequency ratings across all countries (ranging

from 36% to 56% using this strategy) with high

ratings of effectiveness for participants in Norway

(7.5), US (7.3), Colombia (8.6) and Puerto Rico

(9.0) but low ratings of effectiveness in Taiwanese

participants (4.0). United States participants identi-

fied the unhealthy behavior of cigarette smoking

(n�/ 100; 42%) while Norwegian participants (n�/

19; 56%) identified alcohol use as a self-care

behavior for neuropathy. For Colombia or Puerto

Rico, unhealthy behaviors were not identified as

among the most frequent self-care behaviors in these

samples.

An examination of the data by gender and race/

ethnicity shows that women were more likely to

report activities (hot bath, elevating the feet, staying

off the feet, rubbing the feet with cream), massage

and use of some medications (over-the-counter and

prescription anti-epileptics) than men. African-

American respondents were more likely to use hot

bath as a self-care strategy for neuropathy than were

white, Asian or Hispanic participants.

Across all countries, medications were not identi-

fied as among the most frequently used strategies for

self-management of HIV. While 28% of the US

participants reported using prescribed medications

(analgesics and anti-epileptic medications), the med-

ication rate for participants in Taiwan was 2% for

both types of medications. For participants in Puerto

Rico, 42% identified prescribed antiepileptic medi-

cation usage, a higher percentage despite the small

sample size. In Colombia, 16% used prescribed

analgesics and in Norway, 6% identified prescribed

medications as a self-management strategy.

Studies suggest that appropriate pharmacologic

interventions should be based on efficacy, safety,

ease of administration and cost (Verma et al., 2005),

as well as accessibility to these pharmacologic agents

in the US and other countries. Saarto and Wiffen

(2005) in their systematic review found that tricyclic

antidepressants (TCAs) are an effective treatment

for neuropathic pain, while insufficient evidence

exists for the effectiveness of the newer selective

serotonin reuptake inhibitors (SSRIs). Paice and

associates (2000) found that capsaicin is ineffective

in relieving pain associated with HIV-related

neuropathy. In our study, few participants used

medications, thus additional patient assessment

and education are needed related to pharmacother-

apeutics and self-management in HIV disease.

Conclusion

Peripheral neuropathy is an important symptom in

HIV-infected individuals and requires assessment,

intervention and evaluation across the spectrum of

HIV disease. Neuropathy may also occur due to HIV

medications or disease progression and is often

associated with diminished quality of life. Healthcare

providers should assess for this common problem so

that appropriate interventions and follow-up can be

offered to patients. In addition, self-care behaviors

are frequently initiated by patients to manage

peripheral neuropathy, thus healthcare providers

should assess for these behaviors and help patients

to evaluate their effectiveness. The condition

is potentially debilitating and is often triggered

or aggravated by commonly used HIV therapies

(Hulgan et al., 2005; McArthur, 1998; Schifitto et

al., 2005; Swanson et al., 1998).

Future research should be conducted on new

therapies aimed at management of HIV-related

neuropathy including complementary therapies

(acupuncture and massage), medications including

pain medications and the TCAs that can minimize

neuropathic pain, vitamin therapies including B

Peripheral neuropathy 187

complex vitamins and magnesium and other self-

care strategies for peripheral neuropathy. However,

unhealthy behaviors that may exacerbate HIV-

related DSPN also require further investigation.

Woolridge et al. (2005) suggest that cannabis use

may be effective in limiting DSPN; other strategies

including medications require further study.

Additional research and clinical practice guide-

lines should address the need to develop and

promote effective self-care management of periph-

eral neuropathy. Further knowledge about the etiol-

ogy and management of peripheral neuropathy may

assist providers and patients to limit this common

HIV-related problem.

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Peripheral neuropathy 189