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5 Patient Reported Outcomes andQuality ofLife following Heart Transplantation

Perception of quality of life considered

good in all domains

Reasonable HRQoL, social support, and

caregiver burden levels found at all time

points, slight decrease in HRQoL

recorded at 120months. Complications,

comorbidities, and hospitalizations were

associated with HRQoL

(continued)

The patients gained an average level of

QOL (13.75). Positive relationship

between the QOL in all its domains and

personal resources: a sense of coherence,

optimism, self-efcacy, and strategies for

coping, planning, and positive revaluing

Physical=59.09 (female) vs. 65.75 (male)

Psychological=60.23 (female) vs. 75.57 (male)

Social Relations=64.39 (female) vs. 72.35 (male)

Environment=62.22 (female) vs. 69.89 (male)

WHOQOL-

BREF

HRQOL

instrument used QoL scores Main ndings related to HRQOL

Study intent and

number of patients

and symptoms, such

as depression and

anxiety, quality of

Brazil Mental disorders

Quality of Life,

Depression, Anxiety

and Coping Strategies

after Heart

Study Title Country

Trevizan

etal. (2017)

Table 5.5 Longitudinal studies: post—operation intervals only. Studies that focused on outcomes at post-operative intervals only

[28]

Total=61.63 (female) vs. 71.01 (male)

life and coping

Transplantation

KCCQ

strategies in the

post-surgical

situation. n=33

Spain Clinical and

Health-related quality

Delgado

Symptom frequency=87.82±2.25 (6 Mo) vs.

89.00±2.21 (12 Mo) vs. 90.34±2.10 (36 Mo)

Symptom stability=60.10±2.68 (6 Mo) vs.

54.39±2.18 (12 Mo) vs. 54.92±2.24 (36 Mo)

Impact of symptoms=88.94±2.26 (6 Mo) vs.

90.92±1.88 (12 Mo) vs. 93.43±1.73 (36 Mo)

Global symptoms=78.95±1.63 (6 Mo) vs.

EQ-5D

functional status,

HRQoL, social

support, and

caregiver burden

were analyzed in

adult transplant

recipients living

of life, social support,

and caregiver burden

between six and

120months after heart

transplantation: a

Spanish multicenter

cross-sectional study

etal. (2015)

[25]

78.01±1.47 (12 Mo) vs. 79.57±1.45 (36 Mo)

Quality of life=77.72±2.99 (6 Mo) vs. 79.82±2.73

(12 Mo) vs. 88.57±1.59 (36 Mo)

Social limitation=81.09±3.23 (6 Mo) vs.

84.65±2.76 (12 Mo) vs. 91.57±2.05 (36 Mo)

Physical limitation=83.83±2.68 (6 Mo) vs.

84.12±2.80 (12 Mo) vs. 88.57±2.51 (36 Mo)

with one functioning

graft. n=303

Self-efcacy=87.50±2.85 (6 Mo) vs. 85.31±2.22

(12 Mo) vs. 89.39±1.97 (36 Mo)

Overall status summary=80.46±2.16 (6 Mo) vs.

81.65±1.92 (12 Mo) vs. 87.05±1.30 (36 Mo)

Clinical summary score=81.39±1.80 (6 Mo) vs.

81.06±1.77 (12 Mo) vs. 84.11±1.54 (36 Mo)

EQ-5D utility index=0.81±0.03 (6 Mo) vs.

0.82±0.03 (12 Mo) vs. 0.85±0.03 (36 Mo)

EQ-5D VAS=79.04±2.01 (6 Mo) vs. 76.35±2.18

(12 Mo) vs. 79.48±1.68 (36 Mo)

Physical=13.035±1.549

Psychological=13.046±1.100

Social relationship=15.044±2.404

Environment=14.159±2.437

Total QoL=13.75±1.44

WHOQOL-

BREF

patients, relationship

between personal

resources and QoL.

n=121

Poland Subjective QoL of

Psychological

Predictors (Personal

Recourses) of Quality

of Life for Heart

Transplant Recipients

Milaniak

etal. (2014)

[29]

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Low levels of QOL as reected in their

low PCS and MCS scores. Strong positive

association between hope, mood states

and MCS.Age, hope and depression

accounted for 69% of the variance in the

MCS

patients post-HTx and is related to FP

Patients are satised with their quality of

life in all domains. Patients dissatisfed

were few and did not represent a

statistically signicant value. Need for

general population: physical functioning;

role-physical, bodily pain; general health;

vitality; social functioning; role-

emotional; and mental health. The

prevalence of troublesome GI symptoms

greater attention to negative feelings

per GSRS dimension was 53.9% for

A. J. Poovathoor et al.

diarrhea, 91.0% for indigestion, 60.6% for

constipation, 73.4% for abdominal pain,

46.4% for reux and 95.8% for any GI

symptom. Diabetes contributed to

diarrhea, use of prednisolone to

indigestion and increased age to

constipation

MCS=41.64±12.59

HRQOL

instrument used QoL scores Main ndings related to HRQOL

SF-12 PCS=37.91±8.57

Study intent and

number of patients

Levels of hope,

mood states and

QoL, relationships

between these

variables and

United

States of

America

Hope, Mood States

and Quality of

Life in Female Heart

Transplant

Recipients

Study Title Country

Evangelista

etal. (2003)

Table 5.5 (continued)

[39]

SF-36 Not given HRQoL improves signicantly in these

demographics,

predictors of QoL in

female recipients.

n=50

Correlate pre- and

United

The Effects of

Streiff etal.

postoperative

clinical parameters

and events with

HRQoL and

functional

performance (FP).

States of

America

Rejection Episodes,

Obesity, and

Osteopenia on

Functional

Performance and

Health-Related

(2001)

[40]

% of patients satised with regards to:

WHOQOL-

n=70

Brazil Evaluate the QoL of

Quality of Life After

Heart Transplantation

Quality of Life of

Aguiar etal.

Physical=62.8% (male) vs. 58.3% (female)

Psychological=65.1% (male) vs. 58.3% (female)

Social relations=53.5 (male) vs. 100% (female)

Environment=65.1% (male) vs. 83.3% (female)

BREF

HTx patients by

Patients that Had a

(2011)

SF-36 Not given Higher or equal SF-36 scores compared to

Association between

using a standardized

scale. n=55

Finland

Heart Transplant:

Application of

Whoqol-Bref Scale

Association between

[30]

Jokinen

GI symptoms and

HRQoL. n=167

gastrointestinal

symptoms and

health-related quality

of life after heart

transplantation

etal. (2010)

[41]

5 Patient Reported Outcomes andQuality ofLife following Heart Transplantation

66% and 28% reported much better and

somewhat better health. No deterioration

in general health reported at 3 and 5years.

Norm-based comparisons suggested

poorer HRQOL and all SF 36 dimensions

except mental health

and physical function and the physical

role scores. Signicant relationship found

between scores on the respiratory function

tests and physical and social function

scores. No signicant relationship found

between osteopenia and SF36 scores

After Tx patients estimated their personal

status positively, despite impaired

physical capabilities. 2–7years post-Tx

family relationships remained stable,

signicant impairments in the physical

functioning and the physical role, only

minor impairments of normal activities

compared to healthy population.

Compared to heart failure control group,

improvement of the quality of life after

heart transplantation concerning

particularly the vitality, mental health,

general health perception, and bodily

pain. Low proportion of patients went

back to full-time employment

SF-36 domains

Physical functioning=65.01 (58.5–71.5)

Role-physical=44.61 (34.5–54.8)

Bodily pain=42.32 (40.2–44.4)

General health=57.92 (53.9–62.0)

Vitality=54.32 (48.8–59.8)

Social functioning=71.02 (64.9–77.0)

HRQOL

instrument used QoL scores Main ndings related to HRQOL

SF-36

EQ-5D

Study intent and

number of patients

Descriptive analyses

of HRQoL and

norm-based

comparisons.

n=323

United

Kingdom

Health-related Quality

of Life After Cardiac

Transplantation:

Results of a UK

National Survey With

Norm-based

Comparisons

Study Title Country

Saeed etal.

(2008)

[26]

Role emotional=65.43 (55.7–75.0)

Mental health=72.104 (67.7–76.5)

EQ-5D tariff=0.70 (0.64–0.75)

EQ-5D VAS=69.92 (65.6–74.3)

SF-36 not given Signicant relationship between pVO2

performance,

Turkey Effect of functional

The effect of

functional

Karapolat

etal. (2008)

SF-36 Physical functioning=58.29±2.10

respiratory function,

and osteopenia on

QOL. n=31

Germany Physical and

performance,

respiratory function

and osteopenia on the

quality of life after

heart transplantation

Quality of Life After

[42]

Hummel

Role-physical=45.38±3.32

Bodily pain=64.00±2.26

General health=58.29±2.10

Vitality=51.25±1.54

Social functioning=72.04±1.92

Role emotional=69.22±3.19

Mental health=58.11±1.17

emotional condition

after the rst

hospital discharge,

quality of life 2 to

7years after heart

and heart-lung

transplantation.

Heart and Heart–Lung

Transplantation

etal. (2001)

[27]

n=369

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not deteriorate over time. No signicant

correlations found between psychological

measures and medical/demographic data

Fewer than half had good QOL, one-third

had demoralization syndrome.

Demoralization syndrome combined with

post-transplant time, age, use of

mechanical circulatory support during

hospitalization and stress status accounted

for 35.2% of PCS.Demoralization

syndrome combined with age and religion

A. J. Poovathoor et al.

accounted for 40.3% of MCS

HRQOL

instrument used QoL scores Main ndings related to HRQOL

NHP Well-being scores improved after Tx; did

Study intent and

number of patients

adjustment and QOL

over time. n=27

Australia psychological

Longitudinal study of

quality of life and

psychological

adjustment after

cardiac transplantation

Study Title Country

Jones etal.

(1992)

Table 5.5 (continued)

[43]

MCS=48.89±9.59

SF-12 PCS=38.83±7.65

post-transplant times

of recipients in

terms of QoL,

demoralization

syndrome and

Taiwan Compare different

Quality of life,

demoralization

syndrome and

health-related lifestyle

in cardiac transplant

recipients– a

Wu etal.

(2019)

[24]

health-related

lifestyle, predictors

of quality of life.

n=99

longitudinal study in

Taiwan

WHOQOL-BREF: World Health Organisation Quality of Life Brief Version; KCCQ: Kansas City Cardiomyopathy Questionnaire; EQ-5D: EuroQol-5D; EQ-5D VAS: EQ-5D

Visual Analogue Scale; FP: Functional Performance; GI: Gastrointestinal; GSRS: Gastrointestinal Symptom Rating Scale

5 Patient Reported Outcomes andQuality ofLife following Heart Transplantation

Main ndings related to

HRQOL

with QOL at 5 to 10years,

stable over 5-year period.

Predictors of satisfaction

with overall

QOL=primarily

psychosocial variables,

predictors of satisfaction

with QOL related to health

and functioning=symptom

distress, physical function

and psychosocial variables

Mental Component

Summary did not differ

between young and old

subjects. Physical

Component Summary higher

in younger subjects

Despite discomfort and

complications with

immunosuppression, vast

majority of patients maintain

good physical activity and

working ability. They enjoy

good family and sex life,

(continued)

indicating high degree of

satisfaction with the

transplant and their current

status and quality of life

Not given High levels of satisfaction

HRQOL instrument

used QoL scores

QLI– Cardiac Version

Study intent and

number of patients

Predictors of QoL

5–10years after

HTx. n=555

United States

of America

Patterns and

Predictors of

Quality of Life at

5–10Years after

Heart

Transplantation

48.47±10.1 (old)

PCS=46.88±10.2 (young),

40.81±10.6 (old)

SF-36 MCS=48.75±10.2 (young),

depression and

QoL in long-term

HTx recipients

still alive at more

than 10years.

n=137

Italy Role of age on

Getting Old With

a New Heart:

Impact of Age on

Depression and

Quality of Life

in Long-term

Heart Transplant

Recipients

No of patients experiencing:

Discomfort=2

Dizziness and headaches=1

Joint pains=1

Complications of

immunosuppression=5 (skin

infection=1, Kaposi ssarcoma=1,

hirsutism=1, gum hypertrophy=1,

renal failure=1)

Dissatisfaction with sex life=2

interview (working

status, daily walk

routine, pain or

discomfort,

immunosuppression

complications, sex

life, and satisfaction

with regard to quality

of life)

and QoL of

survivors 5years

+. n=10

Israel Functional status

Functional Status

and Quality of

Life of Heart

Transplant

Recipients

Surviving

Beyond 5Years

Dissatisfaction with functional

status and QoL=2

Study Title Country

Grady etal.

(2007)

Table 5.6 Longitudinal studies: long-term follow-up. studies that focused on outcomes in long-term survivors (dened as >5years)

[44]

Martinelli etal.

(2007)

[18]

Aravot etal.

(2000)

[17]

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Rated their health as good

Main ndings related to

and moderately satised with

HRQOL

Family life=0.84±0.15

life. Predictors of better

perceptions of QOL=less

education, longer time since

transplant, ischemic etiology

of heart failure, fewer

barriers, higher perceived

health competence and a

health- promoting lifestyle

Psychosocial/spiritual=0.81±0.15

Socioeconomic factors=0.79±0.15

Health and

functioning=0.77±0.14

The number of comorbidities,

treatment non-compliance,

and several adverse effects

were associated with low

QOL.Waiting to take

LSI=77.4±16.8

TCI=70.9±14.5

A. J. Poovathoor et al.

medications and taking less

medication because of

lifestyle restrictions were

associated with decreases in

QOL over time. Hair loss,

changes in face shape, and

decreased sexual interest or

ability had the largest adverse

effects on QOL changes

Mental QOL of patients at

10years similar to general

population. Physical QoL

worse among patients when

compared with general

population, predictors

including older age, being

married, the presence of

complications, and impaired

renal function

MCS=48.6 (95% CI 46.8–50.5)

QLI–Cardiac Version. Life satisfaction=0.79±0.13

HRQOL instrument

used QoL scores

Study intent and

number of patients

Long-term

recipients’

United States

of America

Lifestyle and

Quality of Life

Study Title Country

Salyer etal.

Table 5.6 (continued)

(2003)

perceptions of

barriers to

health-promoting

behaviors, ability

to manage their

in Long- Term

Cardiac

Transplant

Recipients

[31]

health, health-

promoting

lifestyle, health

LSI

TCI

status and QoL;

predictors of QoL.

n=93

Factors that affect

differences in QoL

United States

of America

Determinants of

Quality of Life

Barr etal.

(2003)

among recipients;

individual changes

in QoL during

1-year period. 569

participants

Changes Among

Long-term

Cardiac

Transplant

Survivors:

Results From

[45]

Longitudinal

Data

SF36 PCS=44.6 (95% CI 42.7–46.4)

QoL of survivors

with associated

predictors 10years

after HTx. n=122

Italy Health status and

Ten Years of

“Extended” Life:

Quality of Life

Among Heart

Transplantation

Survivors

Politi etal.

(2004)

[19]

5 Patient Reported Outcomes andQuality ofLife following Heart Transplantation

Main ndings related to

HRQOL

Patient satisfaction with all

areas of life high at 5 to

6years. Patients who

were≥60years were more

satised with QOL than

patients <60years. At 5 to

6years after heart

transplantation, almost 80%

of variance in QOL was

explained by psychological,

physical, social, clinical, and

demographic variables

Rated their health as good

and only the physical QoL

(PCS) was impaired when

compared with general

population. 32% of patients

experienced mood depressive

symptoms in the long term

after transplantation,

indicating a low perceived

QoL

Mean physical and mental

scores were 57±23 and

58±21. Sixteen per cent of

Family=0.91±0.12

Socioeconomic=0.86±0.13

Psychological/

spiritual=0.85±0.15

Health and

functioning=0.84±0.13

MCS=48.62 (95% CI:

46.98–50.40)

MCS=58±21

(continued)

heart recipients survived

≥20years with good

ventricular performance and

QoL

HRQOL instrument

used QoL scores

QLI Life satisfaction=0.86±0.12

Study intent and

number of patients

Describe QOL;

identify

differences in

QOL by age, sex,

and race; and

United States

of America

Predictors of

Quality of Life at

5 to 6Years

After Heart

Transplantation

Study Title Country

Grady etal.

(2005)

[16]

identify predictors

of QOL at 5 to

6years after HTx.

n=231

SF-36 PCS=45.5 (95% CI: 43.76–47.34)

inuence

long-term QOL

outcomes,

depression on

perceived health

status, n=137

Italy Factors that

Depression and

Quality of Life

in Patients

Living 10 to

18Years Beyond

Heart

Transplantation

Fusar-Poli etal.

(2005)

[32]

SF-36 PCS=57±23

in ≥20years

survivors. n=131

France Outcome and QoL

Clinical outcome

and quality of

life of patients

surviving

20years or

longer after heart

Galeone etal.

(2014)

[20]

transplantation

100

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Main ndings related to

HRQOL

Reasonable HRQoL, social

support, and caregiver

KCCQ

Symptom frequency=87.74±2.50

burden levels found at all

time points, slight decrease

in HRQoL recorded at

120months. Complications,

comorbidities, and

hospitalizations were

associated with HRQoL

(5years) vs. 83.43±2.69 (10years)

Symptom stability=54.17±2.16

(5years) vs. 59.62±2.61 (10years)

Impact of symptoms=88.17±2.26

(5years) vs. 82.44±2.77 (10years)

Global symptoms=76.83±1.86

(5years) vs. 75.16±2.07 (10years)

Quality of life=85.35±2.39

(5years) vs. 80.51±2.40 (10years)

Social limitation=81.18±3.09

(5years) vs. 78.74±2.88 (10years)

Physical limitation=83.05±3.23

(5years) vs. 78.35±2.80 (10years)

Self-efcacy=84.68±2.10 (5years)

vs. 84.42±2.59 (10years)

Overall status

summary=81.60±2.14 (5years)

vs. 78.27±1.94 (10years)

Clinical summary

score=79.94±2.19(5years) vs.

76.79±1.89 (10years)

EQ-5D utility index = = 0.86±0.02

(5years) vs. 0.75±0.03 (10years)

EQ-5D VAS=75.34 2.43 (5years)

A. J. Poovathoor et al.

vs. 68.31 2.46 (10years)

HRQOL instrument

used QoL scores

KCCQ

EQ-5D

Study intent and

number of patients

functional status,

Spain Clinical and

Health-related

quality of life,

Study Title Country

Delgado etal.

Table 5.6 (continued)

(2015)

HRQoL, social

support, and

caregiver burden

were analyzed in

adult transplant

social support,

and caregiver

burden between

six and

120months after

[25]

recipients living

with one

functioning graft.

n=303

heart

transplantation: a

Spanish

multicenter

cross-sectional

study

QLI-Cardiac Version IV: Quality of Life Index-Cardiac Version IV; LSI: Life Satisfaction Index; TCI: Temperament and Character Inventory; CI: Condence Interval

5 Patient Reported Outcomes andQuality ofLife following Heart Transplantation

101

Instrument, author Number

Minnesota Living with Heart Failure

Questionnaire (MLHFQ)

Rector et al 1987(34)

Quality of Life Index–Cardiac Version IV

(QLI - cardiac version IV)

Ferrans and Powers 1985(35)

Kansas City Cardiomyopathy Questionnaire

(KCCQ)

Green et al. 2000(36)

Domains Scoring

of items

21 Physical

Emotional

36 Health and functioning

Social and economic

Psychological/spiritual

Family and relationships

Symptom frequency

Symptom burden

Symptom stability

Physical limitations

Social limitations

Quality of life Self-efficacy

Total score (sum of scores from individual items (6-point Likert Scale 0 to 5))

Range 0 to 105.

Higher scores = poorer quality of life

Scores from part 1 (levels of satisfaction) and part 2 (levels of importance) combined

Higher scores = higher satisfaction and importance

Total symptom score (symptom frequency + symptom burden)

Clinical summary score (symptom frequency + symptom burden

+ physical limitation)

Overall summary score (symptom + physical limitations + social limitations + quality of life)

0-to-100-point scale

Lower scores = more severe symptoms and/or limitations

Scores of 100 = no symptoms, no limitations, and excellent quality of life

Fig. 5.1 A comparison of four heart-failure-specic quality of life instruments commonly used in the selected studies

and 3, 6, and 12months. Baseline physical activity was impaired in all groups, and baseline QoL was not signicantly different among the LVAD and HTx cohorts. Although the study observed a signicant improvement in both physical activity and QoL in both LVAD and HTx groups from baseline to 3 months, at any point in time the HTx group demonstrated higher activity level and QoL.Beyond 3months, physical activity and QoL remain unchanged and inferior to that of healthy participants.

Emin etal. [9] performed a cross-sectional survey of four groups: patients assessed for HTx; patients listed for HTx on medical therapy; patients supported with LVAD; and patients after HTx. 82 LVAD patients and 82 post-HTx patients completed the KCCQ and EQ-5D questionnaires. Patients after HTx scored the highest for both the KCCQ overall summary score (73.0 vs. 52.6) and EQ-5D mean (0.74 vs. 0.58).

The ongoing SUSTAIN-IT trial (Sustaining Quality of Life of the Aged: Heart Transplant

pare health-related quality of life outcomes in 60–80 year old heart failure patients, who receive a heart transplant or are implanted with a destination therapy mechanical circulatory support. The trial utilizes a prospective, longitudinal design, and assesses HRQoL from baseline to 2years post-operatively. The trial’s primary aim is to establish whether mechanical circulatory support devices offer non-inferior benefits to HRQoL as compared to HTx.

Unlike patients in need for organs such as lungs or liver where there is no alternative, patients with end-stage heart failure can have a durable LVAD, which is shown to provide a survival benet against medical management [11] and equipoise against marginal organ recipients [12]. In this chapter we have demonstrated that while HTx still seems to confer an overall improved QoL vs durable LVADs, those receiving LVADs still had an improved QoL compared to baseline and comparable to HTx.

or Mechanical Support?) [10] seeks to com-

102

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A. J. Poovathoor et al.

vs. Medical Therapy

Evangelista etal. [13] performed a longitudinal study assessing 77 patients referred for HTx evaluation, to examine the “effects of time and treatment status on changes in HRQOL scores”. Assessment using the Short Form-12 questionnaire was conducted at baseline, and at a 2year follow-up. The follow-up identied 3 groups of patients: HTx recipients, HTx candidates, and medically stable patients who were not eligible for HTx. Results show a temporal improvement in physical health and depression scores in all groups; there was not much difference in mental health. Furthermore, despite all groups displaying impaired QoL at follow-up, medically stable patients had greater mental health scores and less depressive symptoms than the other groups.

Emin etal’s [9] cross-sectional survey of HTx recipients and medical therapy recipients (among other groups) showed HTx recipients to have the greatest QoL scores in both the KCCQ and EQ-5D surveys.

vs. Waiting-List

Evangelista etal. [14] compared 2 groups of women controlled for age and functional status using the MLHFQ; group 1 were HTx recipients (n=50) and group 2 were candidates on a transplant waiting list (n = 50). QoL was higher among the recipient cohort than the candidates, the scores being 28.0 and 56.3 respectively (lower scores denoting higher QoL). Moreover, physical and emotional health was higher for the recipient cohort.

Similarly, Mantovani et al. [15] performed a cross-sectional study of 47 HTx recipients and 9 wait-list patients. A signicant difference between the two cohorts was seen in the overall QoL score (recipients =30.7 mean rank; waitlist=16.9) and in the four dimensions. The waitlist group had the lowest scores for general health and the highest for role-emotional. Whereas the transplant recipients reported the highest scores for general health and the lowest for bodily pain.

Emin etal. found similar results to these studies: patients listed for HTx had lower QoL scores than HTx recipients in both the KCCQ and EQ-5D surveys.

Longitudinal Studies

Of the long-term follow-up studies reviewed, they can be further sub-classied into immediate-, mid-, and extreme- long-term follow-up. Immediate long-term is dened as 5–10 years post-HTx, mid-long-term as >10 years, and extreme long-term as >20 years. The issue of survivorship bias is particularly relevant when reviewing long-term follow-up studies, as only those who survive and those without major complications will contribute to QoL assessments.

Immediate Long-Term Follow-Up (5–10Years Post-HTx)

Grady etal. [16] studied a non-random sample of 231 patients who were 5 to 6 years post-HTx. Patients reported a high level of satisfaction with life overall and with the following specic areas of life: family, socioeconomic, psychological/ spiritual and health and functioning. Moreover, these areas were reported to be very important from the Quality of Life Index proportional scores. When asked “whether they would make the same decision of having heart transplant surgery again, knowing what they knew 5 to 6 years later”, 87% of responses were “denitely yes”, 8% “probably yes”, 3% “not sure”, and 1% “probably no”.

Aravot etal. [17] reviewed the QoL of their rst ten patients surviving beyond 5years. The interview included questions regarding working status, daily walk routine, pain or discomfort, complications of immunosuppression, sex life, and satisfaction with their QoL. It was found that half of patients reported side effects of the immunosuppressive regimen, and that of these 3 patients needed secondary treatment. These were chronic dialysis, radiotherapy for Kaposi sarcoma and gum resections. Aravot et al. found that 90% were married, 60% employed and 90% walk several kilometres daily. Those in employment stressed their “satisfaction in being able to contribute and not feel like a burden to society and their loved ones”.

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