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SDC Study characteristics i. Studies examining socioeconomic position and the attitudes of potential donors to living kidney donation a=SEP=socioeconomic position, b=NR=Not reported; c= African Americans were less willing to donate to relatives than whites (p=0.04) and socioeconomic factors were independently associated with willingness to donate and significantly attenuated the observed ethnic variation. *=reference numbers refer to main article reference list. Period of data collection Country Sample group Single centre or multicentre Sample size Mean Age (years) % female Marker of SEP a Study design Overall % willing to donate to friend/relative % willing to donate to friend/relative in lower SEP group % willing to donate to friend/relative in higher SEP group Statistically significant difference between high and low SEP? Change in willingness to donate with increasing SEP Newcastle Ottawa Scale Score (max 9) (Al-Shammari 1991) 37 * 1989 Saudi Arabia Residents of Riyadh, Saudi Arabia Single centre – single city sample 753 30.7 36 -Education level -Occupation Cross- sectional survey 66 NR b NR NR Selection=0 Comparability=0 Outcome=1 (Sanner 1998) 38 NR Sweden Residents of Uppsala, Sweden Single centre – single city sample 1060 NR (18-70) 53 -Education level Cross- sectional survey 81 74 85 No Chi2 p>0.05 Selection=2 Comparability=0 Outcome=2 (Boulware, Ratner et al. 2002) 39 2000 USA Residents of Baltimore Multicentre (14 zip codes) 385 NR 66 Assessment of the importance of: - the amount of (financially compensated) time that you would be unable to return to your normal daily activities such as your job or housework. - the amount of time that you would be without pay because you are unable to return to work -the amount of out-of- pocket expenses. Cross- sectional survey 66 66 65 No p=0.8 - Selection=3 Comparability=2 Outcome=2 (Aghanwa, Akinsola et al. 2003) 40 1996- 1998 Nigeria Three samples – patient relatives, health workers, rural dwellers Single centre – town and rural area southwest 316 34.37 44 -Urban/rural/income Cross- sectional survey 51 28 58 Yes Chi2 p<0.05 Selection=1 Comparability=0 Outcome=2

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Page 1: Nigeria - Lippincott Williams & Wilkinsdownload.lww.com/wolterskluwer_vitalstream_com/PermaLink/TP/B… · motivation for donation Newcastle Ottawa Scale Score (max 9) (Zargooshi

SDC Study characteristics

i. Studies examining socioeconomic position and the attitudes of potential donors to living kidney donation

a=SEP=socioeconomic position, b=NR=Not reported; c= African Americans were less willing to donate to relatives than whites (p=0.04) and socioeconomic factors were independently associated with willingness to donate and significantly

attenuated the observed ethnic variation. *=reference numbers refer to main article reference list.

Period of

data

collection

Country Sample group Single

centre or

multicentre

Sample

size

Mean

Age

(years)

%

female

Marker

of SEPa

Study

design

Overall % willing

to donate to

friend/relative

% willing to

donate to

friend/relative

in lower SEP

group

% willing to donate

to friend/relative

in higher SEP

group

Statistically

significant

difference

between high

and low SEP?

Change in

willingness

to donate

with

increasing

SEP

Newcastle

Ottawa Scale

Score

(max 9)

(Al-Shammari

1991)37 *

1989 Saudi

Arabia

Residents of

Riyadh, Saudi

Arabia

Single

centre –

single city

sample

753 30.7 36 -Education level

-Occupation

Cross-

sectional

survey

66 NRb NR NR − Selection=0

Comparability=0

Outcome=1

(Sanner

1998)38

NR Sweden Residents of

Uppsala,

Sweden

Single

centre –

single city

sample

1060 NR

(18-70)

53 -Education level Cross-

sectional

survey

81 74 85 No

Chi2 p>0.05

↑ Selection=2

Comparability=0

Outcome=2

(Boulware,

Ratner et al.

2002)39

2000 USA Residents of

Baltimore

Multicentre

(14 zip

codes)

385 NR 66 Assessment of the

importance of:

- the amount of

(financially

compensated) time that

you would be unable to

return to your normal

daily activities such as

your job or housework.

- the amount of time

that you would be

without pay because you

are unable to return to

work

-the amount of out-of-

pocket expenses.

Cross-

sectional

survey

66 66 65 No

p=0.8

- Selection=3

Comparability=2

Outcome=2

(Aghanwa,

Akinsola et

al. 2003)40

1996-

1998

Nigeria Three samples

– patient

relatives,

health workers,

rural dwellers

Single

centre –

town and

rural area

southwest

316 34.37 44 -Urban/rural/income Cross-

sectional

survey

51 28 58

Yes

Chi2 p<0.05

↑ Selection=1

Comparability=0

Outcome=2

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Nigeria

(Conesa

2004)41

2001 Spain General

population of

region of Spain

Multicentre

– Regional

sampling

310 40 63 -Education level Cross-

sectional

survey

86 89 89 No

Chi2 p=0.403

− Selection=2

Comparability=0

Outcome=2

(Piccoli,

Soragna et al.

2006)42

2002-

2003

Italy High school

students and

technical

institute

students

Multiple

high-schools

/institutes/

single area

1676 NR

(Median

17.5)

47% -Education level/type Cross-

sectional

survey

78 78 78 No − Selection=3

Comparability=1

Outcome=2

(Zhang, Li et

al. 2007)43

NR China University

undergraduates

and

postgraduates

Multicentre 434 NR 56 -Economic background

(urban vs rural)

Cross-

sectional

survey

50 57 44 Yes

Low SEP more

willing to

donate

AOR 1.706

[95% CI 1.144-

2.544]

↓ Selection=2

Comparability=0

Outcome=2

(Rios,

Martinez-

Alarcon et al.

2008)44

2005-

2006

Spain German

residents of

Spain

Single

centre -

Autonomous

Regional

Community

of Murcia

218 46 51 -Education level Cross-

sectional

survey

92 0 93

Yes

Chi2 p<0.001

↑ Selection=1

Comparability=0

Outcome=1

(Segev, Powe

et al. 2009)45

ABSTRACT

NR USA National survey

US population

Multicentre

– national

phone

survey

845 NR NR -Education level

-Household income

Cross-

sectional

survey

NA NA NA NA − Selection=2

Comparability=0

Outcome=1

(Niang, Leye

et al. 2012)46

2010 Senegal Residents of

Dakar

Single

centre -

Dakar

400 33.58 43.25 -Education level Cross-

sectional

survey

72 51 75 Yes

Chi2 p=0.0003

↑ Selection=2

Comparability=0

Outcome=2

(Meng, Lim

et al. 2012)47

NR Singapore Patients

attending

primary

medical centres

Multicentre 1520 49 50 -Education level

-Monthly household

income

-Occupation

Cross-

sectional

survey

48 25 55 Chi2 p<0.001 ↑ Selection=2

Comparability=1

Outcome=1

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(Purnell,

Powe et al.

2013)48

NR USA National survey

US population

Multicentre

– national

phone

survey

845 NR

64 -Education level

-Annual household

income

-Employment

-Health insurance

Cross-

sectional

survey

77 NR See c See c ↑ Selection=2

Comparability=2

Outcome=2

ii. Studies examining the socioeconomic position of commercial organ donors

a=SEP=socioeconomic position, b=NR=Not reported; italics = qualitative studies

Period of

data

collection

Country Sample group Single centre

or multicentre

Sample size Mean

Age

(years)

%

female

Study design Study question SEPa of unrelated donors

% unrelated

donors with

financial

motivation

for donation

Newcastle

Ottawa Scale

Score

(max 9)

(Zargooshi

2001)52

1989-

1995

Iran Living donors –

unrelated and related

Single centre -

Kermanshah,

Iran

100 31 33 Cross-sectional

survey

Characteristics of living

donors and motivation

for donation

(Data for all donors but 94% unrelated)

1. 29% illiterate

2. 60% less than high school education

3. 15% unemployed

83 Selection=0

Comparability

=0

Outcome=1

(Ghods,

Ossareh et al.

2001)53

NR Iran NR NR 500 31 9.8 NR Characteristics of living

unrelated donors

1.6% illiterate

2. 84% ‘poor’

NA Selection=1

Comparability

=0

Outcome=0

(Malakoutian,

Hakemi et al.

2007)51

2005-

2006

Iran Living unrelated donors Multicentre 478 27 18 Cross-sectional

survey

Characteristics of living

unrelated donors and

motivation for donation

1. 29% unemployed

2. 2.7% illiterate.

3. 62% living below World Bank poverty line

($US2 per day)

56

Selection=0

Comparability

=0

Outcome=2

(Khajedehi

1999)50

NR Iran Living donors –

unrelated and related

Single centre –

Shiraz, Iran

78 NR

59 Cross-sectional

survey of living

donors

Characteristics of living

donors and motivation

for donation

1. 58% illiterate

2. 32% abusing drugs

3. 45% unemployed

4. 55% urgently needing money

55 Selection=1

Comparability

=1

Outcome=2

(Beladi

Mousavi,

Alemzadeh

2008-

2009

Iran Living donors –

unrelated and related

Single centre -

Ahvaz, Iran

210 28 20.5 Cross-sectional

survey of living

Characteristics of living

donors and motivation

1. 9.5% illiterate

2. 7.1% abusing drugs

82 Selection=1

Comparability

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Ansari et al.

2013)49

donors for donation 3. 67.1% less than high school level

education

=0

Outcome=2

(Goyal, Mehta

et al. 2002)55

2001 India Commercial living

kidney donors ie donors

who had sold a kidney

?Single centre

– Chennai,

India

305 35 71 Cross-sectional

survey

Characteristics of

commercial living donors

and motivation for

donation

1. 2.7 mean years of education

2. 71% income below poverty line

96 Selection=3

Comparability

=0

Outcome=1

(Moazam,

Moazam

Zaman et al.

2009)54

2007 Pakistan Commercial living

kidney donors ie donors

who had sold a kidney

NA 32 NR 12.5 Qualitative -

ethnographic

interviews and

survey

Characteristics,

motivations, experiences

of commercial donors

1.Education: 91% illiterate. 94 NA

(Awaya,

Siruno et al.

2009)56

2007-

2008

The

Philippin

es

Commercial living

kidney donors ie donors

who had sold a kidney

NA 311 NR 6 Qualitative -

ethnographic

interviews and

survey

Characteristics,

motivations, experiences

of commercial donors

1.Employment: 23.2% unemployed 68

NA

iii. Studies examining the socioeconomic position of non-commercial living organ donors and recipients

a=SEP=socioeconomic position, b=NR=Not reported;

Period of

data

collection

Country Sample group Single

centre or

multicentre

Sample

size

Mean Age (years) %

female

Study

design

Study question Marker

of SEPa

Comment/Findings Newcastle

Ottawa Scale

Score

(max 9)

(Gill, Gill et

al. 2012)59

2000-

2009

USA Living kidney

transplant

donor and

recipient pairs

- USA

Multicentre

(United

States

Renal Data

System

data)

54483

pairs

Donors 40 ±SD11

Recipients

43±SD16

Donors 58

Recipients

41

Retrospective

‘cohort’ study.

United States

Renal Data

System database

analysis

What are the incomes

of living kidney

donors and recipients

in the USA?

1.Median household

income

2.Rural-urban commuting

area code (RUCA) and

groups – a)metropolitan

b)micropolitan c)rural

Concordance of SEP between

donors and recipients.

Most donors and recipients have

similar, modest incomes.

Selection=4

Comparability=2

Outcome=3

(Sehgal

2004)62

1996-

2001

USA Living kidney

transplant

donor and

recipient pairs

- USA

Multicentre

(Scientific

Registry of

Transplant

Recipients)

22674

pairs

Donors 38 ±SD16

Recipients

45±SD16

Donors 49

Recipients

39

Retrospective

‘cohort’ study

Scientific

Registry of

Transplant

What is the net

transfer of living

kidneys from donors

to recipients across

income groups?

Per capita income of each

participant’s ZIP code from

census data.

No significant net transfer of living

kidneys across different incomes in

the USA.

Selection=3

Comparability=0

Outcome=3

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Recipients

database

analysis

(Gore,

Singer et al.

2010)60

1997-

2007

USA Living kidney

transplant

donor and

recipient pairs

- USA

Multicentre

(United

Network

for Organ

Sharing)

51057

pairs

NR NR Retrospective

‘cohort’ study

United Network

for Organ

Sharing database

analysis.

What are the

differences in SEP of

donors and

recipients?

Validated composite index

of the SEP characteristics

of the ZIP code of

residence for donor and

recipient from 2000 US

census files.

No large discrepancies between the

SEP of living unrelated renal

transplant donors and their

recipients.

Being in a LURT pair was associated

with higher odds of having a large

donor-recipient SEP difference

among white recipients (compared

with African Americans, and

Hispanics) and those recipients with

at least some college education

(compared with those with less

than a high schooled education and

high school-educated recipients).

Selection=4

Comparability=1

Outcome=2

(Gore,

Singer et al.

2012)61

1997-

2007

USA Living kidney

transplant

donor and

recipient pairs

- USA

Multicentre

(United

Network

for Organ

Sharing)

39168

pairs

NR NR Retrospective

‘cohort’ study /

‘pooled cross-

sectional

observations’.

United Network

for Organ

Sharing database

analysis.

How does the SEP of

living unrelated

kidney transplant

donors and recipients

compare to that of

living related kidney

transplant donors and

recipients?

1.Area level: composite

index of the SEP

characteristics of the ZIP

code for residence for

donor and recipient from

2000 US census file data.

2. Individual level:

Education level

Living unrelated donors and

recipients had higher SEP than living

related recipients and donors.

NB Spousal pairs classed as living

related donors AND adults defined

as ≥25 years.

Selection=3

Comparability=1

Outcome=3

(Bailey,

Tomson et

al. 2013)63

2001-

2010

UK Living kidney

transplant

donor and

recipient pairs

- England

Multicentre

(England)

4653

pairs

Donors 47.1

Recipients 40.6

Donors 54

Recipients

41

Retrospective

‘cohort’

Do living donor-

recipient relationships

differ with different

levels of socio-

economic deprivation

in the white

population of

England?

Postcode derived area

level Index of Multiple

Deprivation score of

recipient

Sources of living kidney transplants

differed with deprivation (p <

0.001).

Recipients living in poorer areas

were more likely to receive a kidney

from a sibling, child, and “other

relative” donor and less likely from

spouses/partners.

Logistic regression suggested

Selection=4

Comparability=1

Outcome=3

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differences seen with

spouse/partner donations with

deprivation were explained by

differences in the age and gender of

the recipients.

iv. Studies examining the national economic climate and living kidney donation

a=SEP=socioeconomic position, b=NR=Not reported;

Period of

data

collection

Country Sample group Sample

size

Mean

age

(years)

Study design Study question Marker of SEPa Findings

(Muzaale,

Berger et al.

2011)69

ABSTRACT

2004-

2008

USA Living kidney donors

and recipients from

United Network for

Organ Sharing database.

86832 NR

80.2%

aged

18-49

Retrospective cohort study. What variables were

independently associated

with the attrition of the

live kidney donor pool in

the USA between 2004 and

2008?

Donor ZIP code census

data median household

income.

Living kidney donation attrition was independently

associated with donor income (aOR 1.17 p<0.001 ie 17%

more attrition in those with lower incomes).

(Lynch,

Mathur et al.

2011)68

ABSTRACT

2002-

2009

USA Combined analysis of

the Scientific Registry of

Transplant Recipients

and the Index of

Consumer Expectations

as a marker of

financial/economic

instability.

NR NR Ecological study.

Combined analysis of the

Scientific Registry of Transplant

Recipients and the Index of

Consumer Expectations as a

marker of economic

confidence/stability.

Is there a link between

economic instability and

the decision to become a

living kidney donor?

Index of Consumer

Expectations – marker

of economic

confidence/stability.

Living related transplantation rates correlated directly with

the Index of Consumer Expectations but living unrelated

transplant rates demonstrated an inverse relationship.

Variability in donation with the Index of Consumer

Expectations was most pronounced among the poorest

recipients.

v. Studies examining a possible interaction of socioeconomic position with ethnicity and gender

a=SEP=socioeconomic position, b=NR=Not reported; italics = qualitative studies

Period of

data

collection

Country Sample group Single

centre or

multicentre

Sample

size

Mean

Age

(years)

%

female

Study

design

Study question Marker of SEPa Relationship

between SEP

and living

kidney

donation

Findings Newcastle

Ottawa Scale

Score

(max 9)

(Gill, Dong et

al. 2013)64

1998-

2010

USA Living kidney

donors reported to

the Organ

Multicentre

(national

57896 NR NR Retrospective ‘cohort’

study

What is the

relationship

between living

Donor ZIP code

census data

median

The incidence

of living kidney

donation was

The total incidence of living kidney

donation was higher in the African-

American population than in the

Selection=4

Comparability=2

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Procurement and

Transplantation

Network and the

United Network for

Organ Sharing.

databases) kidney donation

and donor

median

household

income?

What are the

effects of race

and income on

living kidney

donation?

household

income.

greater in

higher income

groups in both

African-

American and

white

populations.

white population (incidence rate ratio

[IRR], 1.20; 95% confidence interval

[95% CI], 1.17 to 1.24]), but ratios

varied by income. The incidence of

living kidney donation was lower in

the African-American population than

in the white population in the lowest

income quintile, but higher in the

African-American population in the

three highest income quintiles.

Outcome=2

(Zimmerman,

Donnelly et

al. 2000)65

1991-

1996

Canada First-degree

relatives and

spouses (i.e.

potential living

donors) of renal

transplant

recipients of

Toronto Hospital.

Single

centre

1024

potential

donors

NR 52.6 Cross-sectional

telephone survey of

living kidney transplant

recipients regarding

their potential donors.

What are the

reasons behind

possible

disparity in

living kidney

donation rates

observed

between men

and women?

Employment

status of potential

donors

(used by authors

as a ‘crude

indication of the

financial impact of

donation on that

individual’s

family’)

81% of

acceptable

male donors

were

employed full

time vs 63% of

acceptable

female donors

were

employed full

time.

72% of actual

male donors

were

employed full

time vs 59% of

actual female

donors were

employed full

time.

Of the acceptable living kidney

donors, there appeared to be a

significant attrition of employed men

but not women, suggesting

employment may be a barrier to

donation for the (traditionally)

highest earner.

Selection=4

Comparability=0

Outcome=3

(Lin, Tasi et

al. 2010)70

2005-

2008

Taiwan Potential living

kidney donors

(volunteers for

donation

undergoing

assessment) at

National Taiwan

University Hospital

Single

centre

266 44.8 49 Prospective single

centre cohort study.

Qualitative assessment

of reasons potential

donors ‘unwilling’ to

donate.

What factors

influenced or

prevented

individuals from

living kidney

donation?

Not formally

measured–

participants

reported concerns

regarding

economic stress

and financial

hardship

Of those

24.4% of

original cohort

who were

‘unwilling to

donate’ and

reasons

included

‘economic

stress due to

suspension of

SEP potential barrier to LKD;

economic concerns / position may

prevent donation.

No independent assessment of

economic position to assess if those

withdrawing for economic concerns

were those with lower SEP.

Selection=3

Comparability=0

Outcome=3

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their job’.

(Boulware,

Hill-Briggs et

al. 2011)71

2011 USA African-American

and non-African-

American renal

patients (eGFR <30

mL/min per 1.73

m2 and potentially

eligible for a

transplant in the

future, and a family

member/potential

kidney donor

academic and

nonacademic

nephrology

practices in the

Baltimore,

Maryland,

metropolitan area.

Multicentre 8 renal

patients

8

potential

donors

NR 75%

potential

donors

Pilot qualitative study -

focus groups

Participants

were ‘asked

about their prior

experiences with

discussing living

related kidney

transplantation

and why they

may not have

yet had

discussions’.

Self-reported

socioeconomic

concerns.

Potential

donors did not

report

financial

concerns.

Although several patients (possible

future recipients) reported concerns

about financial risks to potential

donors as a barrier to initiating

discussions this was not an issue

raised by potential donors.

NA

vi. Legislation removing potential socioeconomic disincentives to living kidney donation

a=SEP=socioeconomic position,

Period of data

collection

Country Study design Study question Marker of SEPa Findings

(Lavee, Ashkenazi

et al. 2013)72

2004-2011 Israel Series of cross-sectional

analyses assessing the number

of living kidney transplants

performed in Israel and

abroad before and after the

implementation of the ‘Organ

Transplantation Law’

What is the association

between the

implementation of the

‘Organ Transplantation

Law’ and living kidney

transplantation rates in

Israel?

Intervention – law removed financial

disincentives to living organ donation

(a) earning loss reimbursed b) transport

costs refunded c) cost of recuperation

care at a facility reimbursed d) medical,

work capability loss and life insurances

reimbursed e) cost of psychological

consultations reimbursed.

The annual number of kidney transplants from living donors

ranged from 54-71 between 2004 and 2010. The number then

significantly rose from 71 in 2010 to 117 in 2011 (p=0.003). The

annual number of patients who underwent kidney transplantation

abroad decreased from 155 in 2006 to 35 in 2011 (p=0.006)

(?falling anyway pre-implementation of law).

(Boulware, Troll et

al. 2008)73

1988-2006 USA Series of cross-sectional

analyses assessing the number

of living kidney transplants

performed in the USA before

and after the introduction of

state legislation and federal

initiatives supporting donors.

Have changes in living

kidney donation rates

occurred following the

introduction of state

legislation and federal

initiatives supporting

donors?

Intervention – legislation authorising for

donors:

a) Paid leave

b) Tax benefit

c) Unpaid leave

Other e.g. recommendation or

Over the entire study period the unadjusted mean overall living

kidney donation rate for states with enacted legislation was not

greater than that for states with none (p>0.05).

Rates of living-unrelated donation were associated with state and

federal policies, suggesting policies may selectively decrease

barriers to living-unrelated kidney donation. State legislation and

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Assessed effect on living

related (defined as relatives

plus spouse/partner) vs

unrelated.

encouragement of the above. federal initiatives had no effect on overall living kidney donation

rates but were associated with increases in living-unrelated

donation.

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SDC Detailed search strategies

Systematic review detailed search strategy

Materials and methods

PICO/PEO statement

The populations of interest were:

a) Potential living kidney donors: any living individual known to a recipient who could donate a kidney to them. Altruistic living donors were excluded.

Linked to:

b) Potential living kidney transplant recipients: individuals with deteriorating CKD stage 4 or worse predicted to require, or already receiving, renal replacement therapy in any form (failing transplant, dialysis).

The exposure of interest was SEP. This term lacks a universal definition or measure but it typically incorporates economic (e.g. income), social (e.g. education) and work status (e.g. occupation) variables. This may be measured at individual

and area levels – and may refer to either the potential living kidney donor or the intended recipient.

The main outcome of interest was ‘progression towards LKD. This included:

a) Volunteering for living kidney donor assessment.

b) Progression through donor evaluation to actual donor nephrectomy (or transplantation if measured by the recipient).

Thus, this review aimed to assess and summarize research examining the population of potential living kidney donors, to assess the effect of the exposure of SEP on the outcome of LKD.

Data sources and search strategy

A literature search was performed in December 2013 by the first author (PB) with support from an information scientist from the University of Bristol. The following keywords and variants were used: living, donor(s), donation,

transplant(s), kidney, renal, socioeconomic, deprivation, income, finance, education.

The following electronic databases were searched: EMBASE, Medline, PsycINFO, ASSIA, CINAHL, SIGLE and the Open University Grey Literature site, Cochrane Central Register of Controlled Trials and Cochrane review database, Centre for

Reviews and Dissemination York, and the British Library Electronic Theses Online Service (EthOS). Details for each database are provided in ‘SDC Detailed search strategies.’

Additional reference list searches were performed and three authors provided further data information: Dr L. Ebony Boulware, Dr Giorgina Piccoli and Associate Professor Margareta Sanner.

Study selection

Abstract only and non-English language articles were included.

Studies exclusively looking at deceased organ donation, paediatric organ recipients, non-kidney donation, living-donor transplant recipients or non-socioeconomic variables were excluded. Studies examining the effect of LKD on the SEP of

donors were excluded. Non-primary research articles were excluded. Quantitative and qualitative studies, abstract-only and non-English language articles were included.

Data extraction and quality assessment

The quality of the studies was assessed using the Newcastle-Ottawa Scale (84) (SDC Newcastle-Ottawa Scales). The NOS is a tool for the quality assessment of non-randomised studies included in systematic reviews. Studies are scored out

of a maximum of nine according to the selection and comparability of study groups, and the ascertainment of the exposure/outcome.

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The content screening of search findings and detailed review of the full-text papers were performed by the first author (PB). An independent subset analysis of a random sample of studies, including data extraction and quality assessment,

was performed by a second reviewer (SR) for validity. Any disagreements regarding interpretation of findings or assessment of quality were discussed and a unanimous decision reached.

Data synthesis and analysis

Thirty-three suitable studies were identified and a decision was made to include a description of all original articles. The studies were combined according to the research question and the point on the living kidney donor pathway that was

examined. Overall, a narrative descriptive review was performed because of the wide heterogeneity of the studies.

It was felt that the data from nine studies examining the attitudes of hypothetical living kidney donors towards donation might be appropriately combined into a meta-analysis, performed using Stata 13. Data was extracted from these

studies to populate a 2x2 table of a binary SEP exposure variable (high vs low) against a binary attitude outcome variable of being ‘willing to donate’ or ‘not willing to donate’. All those reported as ‘undecided’ were classed as ‘not willing to

donate’. We dichotomized any ordinal variables at the point the same variable had been dichotomized for other studies. For example, education was dichotomized with ‘secondary education or higher’ classed as higher SEP. A random

effects meta-analysis was performed, as we presumed, a priori, there would be marked heterogeneity by study population and by how exposure and outcomes were measured. This assumption was checked by examining the I2 statistic of

the pooled absolute differences in the proportion of individuals who reported willingness to be a living kidney donor by SEP.

A sensitivity analysis was performed with the highest quality studies. Results were stratified by intended recipient of the hypothetical transplant.

The following electronic databases were searched: EMBASE (1974 to week 51 2013), Medline (1950 to present including in process week 51 2013), PsycINFO (1987 to Dec Week 4 2013) , ASSIA (1681 to 2013), CINAHL (1976 to week 51

2013), SIGLE and the Open University Grey Literature site, UK Clinical Research Network (UKCRN), Cochrane Central Register of Controlled Trials and Cochrane review database, Centre for Reviews and Dissemination York, and the British

Library Electronic Theses Online Service (EthOS).

The following electronic databases were searched with the search strategy and results detailed:

EMBASE (1974 to week 51 2013), Medline (1950 to present including in process week 51 2013), PsycInfo (1987 to Dec Week 4 2013)

1. (live or living).ti,ab. = 761865

2. (donor* or donation or donate*).ti,ab. =538222

3. ((live or living) adj3 (donor* or donation or donate*)).ti,ab. = 30702

4. or/1-3 =1259229

5. transplant*.ti,ab. = 804914

6. (depriv* or deprivation).ti,ab. = 155031

7. Socioeconomic deprivation.ti,ab. = 1410

8. (socioeconomic or socio-economic or social or socio or economic).ti,ab. = 1481036

9. ((socioeconomic of socio-economic or social or socio of economic) adj2 (depriv* or deprivation)).ti,ab. = 4094

10. Social class.ti,ab. = 20187

11. (IMD or index of multiple deprivation).ti,ab. = 3021

12. (income or finance*).ti,ab. = 180808

13. (education or educat*).ti,ab. = 1095434

14. or/6-13 = 2591760

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15. (kidney or renal).ti,ab. = 1442606

16. 3 and 14 = 1731

17. 3 and 14 and 15 = 1174

18. Liver.ti,ab. = 1374296

19. 17 not 18 = 1079

20. (Paed* or pedia*).ti,ab. = 561660

21. 19 not 20 = 998

22. remove duplicates from 21 = 588

23. limit 22 to full text = 70

The search strategy used several features of OVID OSP to capture all possible articles and to exclude those that were inappropriate. The symbol ‘*’ was used as a truncation symbol following a term to capture all variations of endings for

that term (e.g. don* would capture donor, donors, donation); ‘adj’ was used as a proximity operator and ‘adj3’ denotes terms are within 3 words or each other; ‘ti,ab’ denotes searching in the title and abstract. The Boolean operators OR,

AND and NOT were used to combine results of the searches. All abstracts for the results of step 22 were screened in order to capture research published in abstract form only (oral or poster presentation).

Applied Social Sciences Index and Abstracts - ASSIA

[encompassing databases: Australian Education Index (1977 to Week 52 Dec 2013), British Education Index (1975 to Week 52 Dec 2013), ERIC (1966 to Week 52 Dec 2013), International Bibliography of the Social Sciences (IBSS) (1951

to Week 52 Dec 2013), MLA International Bibliography (1926 to Week 52 Dec 2013), Periodicals Archive Online, PILOTS: Published International Literature On Traumatic Stress (1871 to Week 52 Dec 2013), ProQuest Dissertations &

Theses: UK & Ireland, Social Services Abstracts (1979 to Week 52 Dec 2013), Sociological Abstracts (1952 to Week 52 Dec 2013)]

1. ab(live or living) = 142027

2. ab(donor* or donat*) = 15594

3. ab(depriv* or deprivation or socioeconomic deprivation or socioeconomic or social class or social or economic or IMD or index of multiple deprivation or income or finance* or education or poverty or poor) = 1502548

4. ab(kidney or renal) = 3905

5. ab(liver) = 4209

6. ab(paed* or pediat*) = 5105

7. 1 AND 2 = 519

8. 1 AND 2 AND 4 = 72

9. 1 AND 2 AND 3 = 241

10. 1 AND 2 AND 3 AND 4 = 29

11. 10 NOT 5 = 28

12. 11 NOT 6 = 28 results

After content review – 5 papers potentially relevant and not already identified from OVIDSP search.

The search strategy used several features of ASSIA to capture all possible articles and to exclude those that were inappropriate. The symbol ‘*’ was used as a truncation symbol following a term to capture all variations of endings for that

term (e.g. don* would capture donor, donors, donation); ‘ab’ denotes searching in the abstract. The Boolean operators OR, AND and NOT were used to combine results of the searches.

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Cummulative Index to Nursing and Allied Health – CINAHL

1. AB (live or living) = 42876

2. AB (donor* or donat*) = 7218

3. AB (depriv* or deprivation or socioeconomic deprivation or socioeconomic or social class or social or economic or IMD or index of multiple deprivation or income or financ* or education or poverty or poor) = 213503

4. AB (kidney or renal) = 21782

5. AB (liver) = 10782

6. AB (paed* or pediat*) = 26520

7. 1 AND 2 = 612

8. 1 AND 2 AND 4 = 267

9. 1 AND 2 AND 3 = 142

10. 1 AND 2 AND 3 AND 4 = 76

11. 10 NOT 5 = 71

12. 11 NOT 6 = 71 results

No new studies were identified when compared to those identified by the initial OVID SP search.

System for Information on Grey Literature in Europe – SIGLE and the Open University Grey Literature site

No article examining living kidney donation and socioeconomic variables was identified.

Cochrane Central Register of Controlled Trials and Cochrane review database

Title, abstract, keywords: (live or living)

AND

Title, abstract, keywords: (kidney or renal)

AND

Title, abstract, keywords: (donor* or donat*)

AND

Title, abstract, keywords: (socioeconomic or economic or deprivation or education or poverty) 15 results identified.

Of the 15 results identified, no study was found that had not already been identified in the initial OvidSP.

Centre for Reviews and Dissemination York

Any field: (live or living) AND (kidney or renal)

AND

Any field: (deprivation or economic or socioeconomic)

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AND

Title: (donor* or donation* or donat*)

22 hits and 2 possibly relevant papers re. commercialization of LKTx.

British Library EThOS: Electronic Theses Online Service

The searches ‘living kidney donor(s)’, ‘living kidney transplant(ation)’ and ‘deprivation AND transplant(ation)’,‘deprivation AND renal’, ‘deprivation AND kidney’ revealed only one potentially relevant thesis:

‘Social deprivation, ethnicity and renal replacement therapy in England and Wales: Equity of access and outcomes – Udaya Udayaraj’.

However assessment of this thesis reveals there is no assessment of the relationship between living kidney donation and deprivation.

UK Clinical Research Network - UKCRN

At the time of literature review in December 2013, there was only one study registered regarding ‘living kidney donor(s)’ or ‘living kidney transplant(ation)’. This study was the one designed by the authors to address the issues raised by

this systematic review:

UKCRN ID. 15716 Deprivation and non-progression of potential living kidney donors

- From potential donor to actual donation: how does socio-economic deprivation affect the recruitment and progression of living kidney donors? A quantitative-qualitative mixed methods observational study.

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SDC Newcastle-Ottawa Scales - tool for quality assessment

Case-control studies

Selection (select one from each section)

1. Is the case definition adequate?

A) yes, with independent validation *

B) yes, eg record linkage or based on self reports

C) no description

2. Representativeness of the cases

A) consecutive or obviously representative series of cases *

B) potential for selection biases or not stated

3. Selection of Controls

A) community controls *

B) hospital controls

C) no description

4. Definition of Controls

A) control well defined *

B) no description of source

Comparability (select a maximum of two)

1. Comparability of cases and controls on the basis of the design or analysis

A) study controls for age and gender *

B) study controls for any additional factor: ethnicity *

Exposure (select one from each section)

1. Ascertainment of exposure

A) secure record – e.g. postcode derived IMD *

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B) structured interview where blind to case/control status *

C) interview not blinded to case/control status

D) written self report or medical record only

E) no description

2. Same method of ascertainment for cases and controls

A) yes *

B) no

3. Non-response rate

A) same rate for both groups *

B) non respondents described

C) rate different and no designation

Cohort studies

Selection (select one from each section)

1. Representiveness of the exposed cohort

A) truly representative of the average participant in exposed community *

B) somewhat representative of the average participant in exposed community *

C) selected group of patients eg only certain ethnicities, ages

D) no description of the derivation of the cohort

2. Selection of the non-exposed cohort

A) drawn from the same community as the exposed cohort but differing in variable of interest (e.g. socioeconomic deprivation) only *

B) drawn from a different source

C) no description of the derivation of the non-exposed cohort

3. Ascertainment of exposure

A) secure record eg IMD from post-code, ONS data *

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B) structured interview eg education, finances disclosed *

C) written self report

D) other / no description

4. Demonstration that outcome of interest was not present at start of study / ?at time of data collection for retrospective cohort

A) yes *

B) no

Comparability (select a maximum of two)

1. Comparability of cohorts on the basis of the design or analysis

A) study controls/adjusts for age, sex *

B) study controls for any additional factors e.g. ethnicity *

Outcome (select one from each section)

1. Assessment of outcome

A) independent blind assessment *

B) record linkage *

C) self report

D) other / no description

2. Was follow up long enough for outcomes to occur?

A) yes (select an adequate follow up period for outcome of interest) OR end-point reached before then *

B) no

3. Adequacy of follow up of cohorts

A) complete follow up: all subjects accounted for *

B) subjects lost to follow up unlikely to introduce bias: number lost ≤20% or description of those lost suggesting no different from those followed *

C) follow up rate <80% and no description of those lost

D) no statement

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Cross-sectional studies

Selection (select one from each section)

1. Representativeness of the sample

A) Truly representative of the average in the target population. * (all subjects or random sampling)

B) Somewhat representative of the average in the target population. * (non-random sampling)

C) Selected group of users.

D) No description of the sampling strategy.

2. Sample size

A) Justified and satisfactory. *

B) Not justified.

3. Non-respondents

A) Comparability between respondents and non-respondents characteristics is established, and the response rate is satisfactory. *

B) The response rate is unsatisfactory, or the comparability between respondents and non-respondents is unsatisfactory.

C) No description of the response rate or the characteristics of the responders and the non-responders.

4. Ascertainment of the exposure (risk factor)

A) Validated measurement tool. *

B) Non-validated measurement tool, but the tool is available or described.*

C) No description of the measurement tool.

Comparability (select a maximum of two)

1. The subjects in different outcome groups are comparable, based on the study design or analysis. Confounding factors are controlled.

A) The study controls for the most important factor (select one). *

B) The study control for any additional factor. *

Outcome (select one from each section)

1. Assessment of the outcome:

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A) Independent blind assessment. **

B) Record linkage. **

C) Self report. *

D) No description.

2. Statistical test:

A) The statistical test used to analyze the data is clearly described and appropriate, and the measurement of the association is presented, including confidence intervals and the probability level (p value). *

B) The statistical test is not appropriate, not described or incomplete.

This scale has been adapted from the Newcastle-Ottawa Quality Assessment Scale for cohort studies to perform a quality assessment of cross-sectional studies for this systematic review.