S86
REVIEW ARTICLE (META-ANALYSIS)
What Are the Important Factors in Health-Related Quality of
Life for People With Aphasia? A Systematic Review
Katerina Hilari, PhD, Justin J. Needle, PhD, Kirsty L. Harrison, MMedSci
ABSTRACT. Hilari K, Needle JJ, Harrison KL. What are the
important factors in health-related quality of life for people with
aphasia? A systematic review. Arch Phys Med Rehabil 2012;93
(1 Suppl 1):S86-95.
Objective: To determine factors associated with or predictive
of poor health-related quality of life (HRQL) in people with
aphasia poststroke. Better understanding of these factors can
allow better targeting of rehabilitation programs.
Data Sources: Electronic databases, covering medical (eg,
Medline, Excerpta Medica Database, Evidence-Based Medi-
cine Reviews, Cumulative Index to Nursing and Allied Health
Literature, Ovid, Allied and Complementary Medicine Data-
base) and social sciences (eg, PsycINFO) were searched and
key experts were approached.
Study Selection: Studies including specific information on the
HRQL of people with aphasia poststroke using validated
HRQL measures or established ways of analyzing qualitative
data were included. Two reviewers independently screened
studies against the eligibility criteria.
Data Extraction: This was undertaken independently by 2
reviewers. Discrepancies were resolved by consensus. Quanti-
tative studies were assessed for quality with Counsell and
Dennis’ critical appraisal tool for systematic review of prog-
nostic models in acute stroke; qualitative studies with the
Critical Appraisal Skills Program tool for qualitative research.
Data Synthesis: Fourteen research reports met the eligibility
criteria. Because of their high heterogeneity, the data synthesis
was narrative. The evidence is not strong enough to determine
the main predictors of HRQL in people with aphasia. Still,
emotional distress/depression, severity of aphasia and commu-
nication disability, other medical problems, activity limitations,
and aspects of social network and support were important
factors.
Conclusions: Emotional distress, aphasia severity, communi-
cation and activity limitations, other medical problems, and
social factors affect HRQL. Stroke HRQL studies need to
include people with aphasia and report separately on them, in
order to determine the main predictors of their HRQL and to
identify what interventions can best address them.
Key Words: Aphasia; Health status; Health status indica-
tors; Quality of life; Rehabilitation; Stroke.
© 2012 by the American Congress of Rehabilitation
Medicine
From the Departments of Language and Communication Science (Hilari, Harrison)
and Health Services Research and Management Division (Needle), City University
London, London, UK.
No commercial party having a direct financial interest in the results of the research
supporting this article has or will confer a benefit on the authors or on any organi-
zation with which the authors are associated.
Reprint requests to Katerina Hilari, PhD, Dept of Language and Communication
Science, City University London, Northampton Square, London EC1V 0HB, UK,
e-mail: k.hilari@city.ac.uk.
0003-9993/12/9301S-01160$36.00/0
doi:10.1016/j.apmr.2011.05.028
Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012
A PHASIA IS A LANGUAGE DISORDER affecting use
and understanding of language and is most commonly
caused by a stroke. About a third of stroke survivors have
aphasia at onset,1 while 15% remain aphasic in the long term.2
Health-related quality of life (HRQL) reflects the impact of a
health state on a person’s ability to lead a fulfilling life3 and covers
individuals’ perception of/satisfaction with their physical, mental/
emotional, family, and social functioning.4 By incorporating
HRQL assessments in health care evaluations, the impact of
disease from the patient’s perspective can be captured. In stroke
and aphasia, rehabilitation programs specifically aim to improve
the client’s sense of well-being and quality of life.5
A recent population-based study of people living in long-
term care facilities in Canada (n⫽66,193) compared the impact
of 60 diseases and 15 conditions on caregiver-assessed prefer-
ence-based HRQL. After adjusting for age, sex, and other
diagnoses, aphasia exhibited the largest negative relationship to
preference-based HRQL followed by cancer and Alzheimer’s
disease.6 People with aphasia themselves report significantly
worse HRQL than nonaphasic stroke controls7; and worse
quality of life than healthy controls, particularly in terms of
independence, social relationships, and access to aspects of
their environment.8
This evidence suggests that aphasia has a profound effect on
people’s lives. However, before interventions and service pro-
vision can be targeted effectively to address improvements in
the lives of people with aphasia, it is important to understand
what the main predictors of their HRQL are. Numerous studies
have focused on predictors of HRQL after stroke, and a recent
synthesis identified depression/emotional distress and func-
tional status/physical disability as the most consistent predic-
tors; other factors included female sex and social factors (so-
cioeconomic status, social support).9 Findings from stroke
studies, though, are not necessarily applicable to people with
aphasia. Stroke studies either exclude or selectively include
people with aphasia because of their communication prob-
lems.10-20 In the studies that include people with aphasia, proxy
respondents are used,11,12,21-25 or results are compromised by
incomplete data.26-29 Some studies provide no information on
how people with aphasia manage with complex question-
naires.16,30,31 Lastly, these studies provide no separate results
for the HRQL of people with aphasia.
A number of studies have looked specifically at people with
aphasia to explore the impact of the condition on their lives.
Some have not looked at HRQL but related phenomena, like
psychosocial adjustment/optimism,32-34 identity,35 and social
participation.36-39 From the studies that explored HRQL or
closely related concepts, such as life satisfaction and well-
being, some have used nonvalidated measures,40-42 while oth-
ers have used self-developed questionnaires.43,44 Few studies
List of Abbreviations
EPPI Evidence for Policy and Practice Information
HRQL health-related quality of life
 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari
specifically focused on the HRQL of people with aphasia using
validated HRQL scales or established qualitative methods. To
date, the results of these studies have not been synthesized.
This makes the targeting of interventions problematic: if we do
not know what predicts HRQL in people with aphasia then we
cannot provide interventions or services to improve their lives.
This was highlighted in a recent systematic review of commu-
nication partner training in aphasia, where despite evidence of
improvement in communication and activity/participation for
people with chronic aphasia, there was no evidence for quality
of life improvement.45
This systematic review aimed to: (1) identify factors asso-
ciated with or predictive of HRQL in people with aphasia
poststroke and (2) review the quality of relevant studies in
order to establish the strength of existing evidence.
METHODS
This review follows well-established methods for conduct-
ing and reporting systematic literature reviews.46,47
Eligibility Criteria
To be included, studies had to report research data on factors
associated with or predictive of HRQL in people with aphasia
after stroke. Only English-language publications were in-
cluded. There was no restriction on publication date, geograph-
ical location, and study design, as long as studies met criteria
below in terms of participants and outcomes. Relevant theo-
retical articles, policy documents, opinion pieces, and similar
material were identified in order to provide background and
context.
Participants had to be adults who had acquired aphasia after
stroke, excluding those focusing exclusively on subarachnoid
hemorrhage. No other exclusion criteria, such as age, sex,
setting, aphasia type, stroke/aphasia severity, or comorbidities,
were applied.
Outcomes used had to be validated HRQL measures (for
studies presenting quantitative data), established ways of ana-
lyzing data (for qualitative studies), and systematic methodol-
ogy (for reviews).
Sources of Information
Electronic bibliographic and full-text databases were searched:
Medline, Excerpta Medica Database Psychiatry, Evidence-
Based Medicine Reviews (Cochrane Central Register of
Controlled Trials, Cochrane Database of Systematic Re-
views, Database of Abstracts of Views of Effects, Health
Technology Assessment Database), Health Management In-
formation Consortium (Department of Health Data, Kings
Fund Library Catalogue Database, Health Management In-
formation Service), Cumulative Index to Nursing and Allied
Health Literature, Allied and Complementary Medicine
Database, British Nursing Index, Ovid Nursing Full Text
Plus, PsycINFO, PsycARTICLES, and Global Health. Re-
quests for material were made to recognized researchers in
the fields of stroke and aphasia.
Search Strategy
The following strategy was used for Ovid MEDLINE, and
modified for use with other resources as appropriate (terms in
capital letters are Medical Subject Headings [MeSH] terms):
1. aphasi$.tw.
2. dysphasi$.tw.
3. exp APHASIA/
4. or/1-3
S87
5. exp QUALITY OF LIFE/or exp HEALTH STATUS/or exp
HEALTH STATUS INDICATORS/or exp QUALITY-
ADJUSTED LIFE YEARS/
6. (good health or (health adj5 level) or health status or
hrqol or hrql or qol$ or (qualit$ adj5 life) or qualit$
adjusted life year$ or qaly$ or well being or wellbeing or
wellness or psychosocial or psycho social or (life adj5
satisfaction)).tw.
7. 5 or 6
8. 4 and 7
9. limit 8 to English language
Additional subject headings used in other databases were:
dysphasia, health and quality of life, well being, wellbeing,
wellness, and life satisfaction.
Data Management
Study data were stored and coded within Evidence for Policy
and Practice Information (EPPI-Reviewer, Version 4a), a col-
laborative, web-based application produced by the EPPI and
Co-ordinating Centre.48
Screening
After the removal of duplicate studies, material resulting
from the searches was screened independently by 2 reviewers
against the eligibility criteria. Reasons for (potential) inclusion
or exclusion were documented. Where eligibility could not be
assessed on the basis of the title and abstract alone, the full text
was obtained. The full text of studies passing the screening
process was obtained. Discrepancies between the 2 reviewers
were discussed by the review team and an agreement reached.
Studies that were relevant to the review topic but did not meet
the criteria for inclusion were set aside for use for background
and context.
Data Extraction and Critical Appraisal
Data extraction and assessment of methodologic quality for
each study were undertaken independently by 2 reviewers and
recorded on electronic data collection forms within EPPI-
Reviewer. Reviewers were not also the authors of papers they
reviewed. Any discrepancies were resolved by discussion
within the review team.
Data extracted for each study included: full publication
details, study design, background and aims, country and set-
ting, time of assessment(s), study population (sample size, sex,
age, ethnic group, socioeconomic classification, educational
background, proportion with aphasia, type, class, and severity
of stroke, type and severity of aphasia, presence and nature of
any comorbidities), respondent (self-report/proxy), factors pre-
dicting/influencing HRQL, primary and secondary outcome
measures, and main findings.
Studies reporting quantitative data were assessed for quality
using the critical appraisal tool developed by Counsell and
Dennis49 for their systematic review of prognostic models in
acute stroke. This tool assesses external and internal validity,
statistical validity, model evaluation, practicality of model,
and, where applicable, predictive ability. Qualitative studies
were assessed using the Critical Appraisal Skills Program tool
for Qualitative Research developed by the Public Health Re-
source Unit, which assesses rigor, credibility, and relevance.50
Data Analysis
Given the high levels of heterogeneity among the included
studies, data analysis took the form of a narrative synthesis of
the evidence, an approach that is appropriate for synthesizing
the results of studies with disparate study designs and aims.51
Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012
S88 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari
RESULTS
Study Selection
Electronic database searches were conducted in September
2010 and resulted in a total of 2254 references. Nineteen
references were received from requests for information from
subject experts. Study flow in the review and reasons for
exclusion are given in figure 1 (only 1 reason is given per
excluded study, though in many cases studies could have been
excluded for more than 1 reason). After deduplication, 1791
(79%) studies remained. The screening process resulted in the
exclusion of 1746 references. The full text of the 45 remaining
references was reviewed and a further 31 were excluded: 15
presented no specific data for the subgroup of aphasic partici-
pants,9,16,26,30,31,52-61 7 did not examine factors predictive of/
associated with HRQL, 6-8,62-65 4 were nonsystematic
reviews/overviews,66-69 3 were quantitative studies which did
not use a valid HRQL measure,27,43,44 1 was a qualitative study
which used no established method of analysis,70 and 1 was
exclusively on subarachnoid hemorrhage.71 This left 14 stud-
ies,72-85 which proceeded, along with 3 linked articles,86-88 to
the data extraction and critical appraisal stage.
Study Characteristics
The 14 reports included describe data from 11 studies be-
cause participants with aphasia were the same in the 3 reports
by Cruice et al73-75 and in 2 by Hilari et al.77,78 Of the 14
reports, 3 were qualitative (1 using structured interviews,74 1
in-depth interviews,83 and 1 an ethnographic account of pub-
lished data80), 6 were cross-sectional,73,75,77-79,82 3 were case-
control,72,81,84 1 was a cohort study,85 and 1 was a retrospective
study using data drawn from 2 randomized controlled trials.76
Four reports involved hospital-based samples in Belgium,81
Japan,82 Sweden,76 and the U.S.85 In 1 report based in the
Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012
Fig 1. The review process: flow
diagram.
U.S.,84 it is unclear where the sample is drawn from. Eight
reports involved community-based samples in Australia,73-75
Canada,72 and the UK.77-79,83 Two studies were longitudinal
and followed participants from hospital to 6 months,76 and
from 3- to 6-, 9-, and 12-months85 poststroke. The speech and
language intervention that people with aphasia received in the
latter study is clearly described, but no information on inter-
vention is provided in the former study. In 1 study81 time of
assessment ranged from 15-days to 43-months poststroke, and
a subgroup of people with aphasia were reassessed 8 months
later (though the latter data were not used in identifying pre-
dictors of HRQL). In 11 studies data collection was cross-
sectional and participants with aphasia were in the chronic
stages poststroke, with a mean of about 42 months (range,
6 –250mo) in most studies.72-75,77-79,84
Sample size in the qualitative studies ranged from 18 to 50,
including a total of 98 people with aphasia. Quantitative studies
included 742 people with aphasia (range, 12– 422) and 1486
controls/comparison groups (range, 18 –1195). Though most
reports provided details on either the type or severity of apha-
sia,72-75,77-79,81-85 less than half provided information on type of
stroke,77-79,81,82,84 and no study stated stroke classification or
severity. In terms of demographic characteristics, all but 1
report80 stated participant sex and age (range, 21–96), 10
reports gave socioeconomic classification, employment status,
or education level,72-75,77-79,81,84,85 and 3 stated ethnic back-
ground.77-79
Risk of Bias Within Studies
Qualitative studies. Table 1 presents the results of the
quality assessment of the 3 qualitative studies.74,80,83 All stud-
ies stated their aims clearly and chose an appropriate qualita-
tive methodology to address their aims. Recruitment and data
collection was problematic in 2 of the studies. In the study by
 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari S89

Table 1: Quality Assessment of Qualitative Studies of HRQL for People With Aphasia
Criteria Cruice et al74 Hinckley80 Parr et al83

1. Was there a clear statement ✓ ✓ ✓

of the aims of research?
2. Is a qualitative methodology
appropriate?
3. Was the research design
appropriate to address the
aims of the research?
4. Was the recruitment strategy
appropriate to the aims of
the research?
5. Were the data collected in a
way that addressed the
research issue?
6. Has the relationship between
researcher and participants
been adequately considered?
7. Have ethical issues been
taken into consideration?
8. Was the data analysis
sufficiently rigorous?
9. Is there a clear statement of
findings?
10. How valuable is the
research?
✓ ✓
✓ ✓
The study did not use purposive
sampling, but a sample
recruited for a larger study.
Study described as preliminary.
No probing or prompting
used during interviewing. No
discussion of data saturation.
Not considered
Not clear. The study was
approved by the university
ethics committee, but no
details of consent or
confidentiality issues or
explanations to participants.
✓ The researcher has not described in
Credibility of findings has not
been discussed: no
triangulation, no validation
with respondents, 1 main
analyst.
✓ ✓
A preliminary study, so value is
limited, however highlights
the need “for further quality
of life research, using in-
depth interviewing and
different qualitative
techniques, to explore a
broader range of quality of
life perspectives of different
subgroups of people with
aphasia.”
✓
✓
28 published accounts met inclusion ✓
criteria but 8 not available for
review. Also, used a highly
unrepresentative sample (eg,
young, well-educated,
professionally employed).
Highly unrepresentative sample. No ✓
discussion of data saturation.
✓ Not considered
Nonapplicable analysis of published ✓
reports
✓
sufficient detail how themes were
derived from the data and how
the data presented were selected
from the original sample to
demonstrate the analysis process.
Credibility of findings has not been Credibility of findings has not been
discussed: no triangulation, no discussed: no triangulation, no
validation and 1 main analyst. validation with respondents.
The second rater seems to have Unclear how many researchers
been involved only in extracting analyzed the data.
the 4 main themes.
✓
The author briefly discusses the Valuable research in that it
study in connection with the highlights the personal and
existing literature, but lack of individual nature of the impact
representativeness of the sample of aphasia on aspects that
limits usefulness. No discussion contribute toward quality of life.
of the potential application of the
research or areas of future
research.

Abbreviation: ✓, criterion met.

Hinckley,80 of the 28 eligible published accounts, 8 were
unavailable and thus not included in the study. The sample
was also highly unrepresentative of the population of people
with aphasia as it comprised mostly young, well-educated,
and professionally employed people. In the study by Cruice
et al,74 participants were recruited from a larger study rather
than through purposive sampling. The authors acknowledge
that lack of probing or prompting of participant responses
means that their responses may not reflect their full appre-
ciation of their quality of life and do not allow us to infer
relationships or causation in the data. Data analysis was
rigorous in 2 of the studies,74,83 with clear descriptions of
how the categories/themes were drawn from the data and
sufficient data presented to support the findings. Triangula-
tion of the data and validation with respondents has not been
discussed in the included studies. There was 1 main analyst

Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012

S90 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari
in 2 of the studies,74,80 and in the third83 it is unclear how
many researchers analyzed the data.
Quantitative studies. Table 2 presents the results of the
quality assessment of the quantitative studies. Quality was
assessed in terms of external validity, internal validity, and
where applicable, statistical validity, evaluation, and practical-
ity of model.
External validity. All studies provided an adequate de-
scription of their sample (age and sex), and 6 involved com-
munity-based samples.72,73,75,77-79 Only 4 reports72,77-79 had no
major exclusion criteria, with other studies excluding people
based on age,73,75,82,84 type of aphasia,85 or missing data on
outcome measure.76
Internal validity. No study had an inception cohort that
was explicitly assessed within 7 days of stroke, but all studies
reported the time since stroke. In the studies where participants
were followed-up, over 40% of the sample was lost to follow-
up,76,81,85 but follow-up was over 30 days in all of them and
participants were assessed at fixed time points in 2 of them.76,85
In the remaining reports,72,73,75,77-79,82,84 participants with
aphasia were assessed while in the chronic stage poststroke
(⬎6mo) but not at a fixed time. Data collection was prospective
in all but 1 study.76 In terms of outcome measures, valid and
reliable scales were used, but 2 studies did not report on the
psychometric properties of the tools used (Satisfaction in Daily
Life Scale82 and World Health Organization Quality of Life -
Bref84). Predictive variables were clearly defined, clinically
valid, and reliable, with the exception of the Communication
Activities Checklist and Social Activities Checklist,73 fre-
quency of social contacts78 and severity of aphasia, rated by
hospital doctors.82 Stroke severity was not included as a pre-
dictor variable in any of the studies and age was included only
in 5 studies.72,77,81,82,85 Neither of these 2 variables was entered
in regression models in any of the studies.
Statistical validity and evaluation and practicality of model.
Only 2 studies generated a regression model of predictive
variables of HRQL in people with aphasia poststroke: 1 used
stepwise regression analysis,73 and in the other there was an
adequate sample size (events per variable⬎10) and multicol-
linearity was assessed.77 Neither study met the criteria set for
evaluation of the model. In terms of practicality, only 1 study77
presented the actual model. Some of the data used in both
studies are not routinely available in clinical practice.
Synthesis of Results
Full findings of the included studies, with information on
what predictor variables were explored and what outcome
measures were used, are given in detail in Supplemental Ap-
pendix 1 (available online at www.archives-pmr.org). Because
the study designs, participants, and reported outcome measures
varied markedly, the results are synthesized descriptively.
Qualitative studies. Looking at the 3 qualitative studies, Cruice
et al74 reported that their participants with aphasia identified the
following as the main factors that contribute to or detract from their
quality of life: activities, verbal communication, people, and body
functioning. Other factors that influenced quality of life included
stroke, mobility, positive personal outlook, in/dependence, home, and
health. In Hinckley’s study,80 4 themes emerged in terms of living
successfully with aphasia. First, social support was identified as a
critical factor, which links with the importance of the people identified
by Cruice.74 Second, successful living appeared to require an adap-
tation of one’s perception of self. Third, most of the writers of the
accounts reviewed looked to the future and set new goals. Finally, all
of the published accounts noted the importance of taking charge of
one’s own continued communication improvement. Adaptation of
one’s perception of self and identity emerged as a theme in the third
Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012
study83 too: learning to live with aphasia involved a sound under-
standing of aphasia, developing a strong personal identity, and finding
others with aphasia to develop a collective identity. It also involved
sharing responsibility with nonaphasic people to dismantle disabling
barriers faced by people with aphasia. Educating other people and
those providing services about aphasia would help address environ-
mental and structural barriers; promoting awareness of aphasia would
tackle attitudinal barriers; and making information more easily acces-
sible would reduce informational barriers.
Quantitative studies. Table 3 summarizes the factors that were
found to be associated with or predictive of poorer HRQL in people
with aphasia in quantitative studies. A total of 21 factors were ex-
plored though only 7 (age, sex, education, time postonset, aphasia
severity/language impairment, communication disability, and dis-
tress/depression) were explored in 3 or more studies. The factors most
consistently associated with reduced HRQL comprised aphasia se-
verity/language impairment (7/8 studies), communication disability
(3/4 studies), and depression (3/3 studies). Activity level was explored
with validated scales in only 2 studies, but both found it to be
important. The evidence for the influence of demographic variables
was limited: older people may be more severely affected (3/5 studies);
and women may be more severely affected, particularly when inter-
actions with other variables are taken into account: severity of aphasia
and reduced social network (3/5 studies). When considered together,
having other medical problems (2/2 studies) and social factors (3/4
studies) also contributed to more severely affected HRQL. Factors
that were confirmed as predictors of HRQL using regression models
were depression/high emotional distress (2/2 studies), communication
disability (2/2 studies), having other medical problems (2/2 studies),
language impairment (1/2 studies), and activity level (1/2 studies).
DISCUSSION
Summary and Implications of Findings
Fourteen reports were found that reported factors associated
with or predictive of HRQL in people with aphasia. Emotional
distress/depression, extent of aphasic impairment and communi-
cation disability, presence of other medical problems, and activity
level were the predictors of HRQL emerging from quantitative
studies. Social factors also emerged as important. Themes drawn
from qualitative studies—looking to the future/having a positive
outlook, verbal communication, body functioning, and people and
social support—supported these findings. They also added to
them, by identifying adaptation of personal identity and develop-
ment of a collective identity, and working to remove the barriers
that people with aphasia face as ways to reduce disability and live
successfully with aphasia.
Our findings on the impact of emotional distress/depression
on the HRQL of people with aphasia are in line with the
findings of long-term outcome stroke studies.21,25,89-91 Depres-
sion appears to be more of a problem for people with aphasia,
where the frequency of depression is higher92 (62% at 1-y
poststroke) than for other stroke survivors (34% at ⬎6mo
poststroke93). Depression after stroke has been associated with
poor recovery,94 poor functional outcomes,95 poor social out-
comes,24 increased health care use,96 and mortality.97 Recent
evidence on the treatment of poststroke depression (excluding
people with aphasia) suggests that outcomes are better when
pharmacologic treatment is combined with psychosocial-
behavior intervention.98 There is a pressing need to explore
such treatments for people with aphasia, where depression is a
persisting problem impacting on HRQL.
The extent of aphasia (severity, language impairment, commu-
nication disability) was associated with or predictive of lower
HRQL in 7 of the 8 reviewed studies. This finding needs to be
interpreted with caution as none of the reviewed studies consid-
 Table 2: Quality Assessment of Quantitative Studies of HRQL for People With Aphasia
Bose Cruice Cruice Franzén-Dahlin Hilari Hilari and Hilari and Manders Nagayoshi Ross and
Criteria et al72 et al73 et al75 et al76 et al77 Northcott78 Byng79 et al81 et al82 Wertz84 Sarno85

External validity
Community based population ✓ ✓ ✓ ✓ ✓ ✓ Not stated
TIAs and SAHs excluded Not stated Not stated Not stated Not stated Not stated Not stated Not stated Not stated Not stated Not stated
No major exclusion criteria ✓ ✓ ✓ ✓ ✓
Age given ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Sex given ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Treatment details given NA NA NA NA NA NA NA NA ✓
Internal validity

HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari

Inception cohort
-TPO stated ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
-ⱕ7d since stroke
-⬍10% lost to follow-up NA NA NA 44% PWA lost NA NA NA 51% PWA lost NA NA 45% lost
Prospective data collection ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓§
Valid, reliable outcomes ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓ ✓
Timing of outcomes
-Fixed points used ✓
-30d follow-up NA NA NA ✓ NA NA NA ✓ NA NA ✓
Valid, reliable predictor ✓ ✓/x* ✓ ✓ ✓/x† ✓ ✓ ✓/x‡ ✓ 82
variables
Important predictors (age, stroke
severity) included in
models
Model generated ✓ ✓
Statistical validity
Events per variable ratio ⱖ10 ✓
Stepwise analysis ✓
Collinearity assessed ✓
Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012

Evaluation of model
Internal validation
External validation
Better than clinical prediction
Effect of use in clinical
practice established
Practicality of model
Feasible predictor variables ✓
Actual model given ✓
Confidence intervals given

NOTE. Empty cells: criterion not met.

Abbreviations: NA, not applicable; PWA, people with aphasia; SAH, subarachnoid hemorrhage; TIA, transient ischaemic attack; TPO, time postonset; x, criterion not met for some of the variables; ✓, criterion met.
*Communication Activities Checklist and Social Activities checklist not tested for reliability and validity.
†
Frequency of social contacts not tested for reliability and validity.
‡
Severity of aphasia was rated by hospital doctors.
§
Although data were collected prospectively, the decision on what to include in the analysis was made retrospectively (main aim was to explore the effect of age; once age emerged as not significant data were reanalyzed by aphasia
type.

S91
S92 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari

Table 3: Variables Associated With or Predictive of Poorer HRQL in People With Aphasia Poststroke
Bose Cruice Cruice Franzén-Dahlin Hilari Hilari and Hilari and Manders Nagayoshi Ross and n associated/
Variable et al72 et al73 et al75 et al76 et al77 Northcott78 Byng79 et al81 et al82 Wertz84 Sarno85 n explored

Demographic
Age (older) x ✓ ✓ ✓ x 3/5
Sex (women) x x ✓ x✓† 2/4
Ethnicity x 0/1
Marital status x 0/1
Lower education level x x ✓ 1/3
SEC x 0/1
Employment x 0/1
Stroke
Stroke type x 0/1
Stroke severity
Time postonset x x x ✓ ✓ but not for 2/5
(earlier) global
aphasia
group
Stroke sequelae
Aphasia severity ✓ ✓ x✓† 3/3
Aphasic language ✓ ✓ ✓ x ✓ 4/5
impairment
Aphasic communication ✓ ✓ ✓ x 3/4
disability
Functional status/activity ✓ ✓ 2/2
level
Cognitive impairment ✓ 1/1
Other medical problems
Near vision ✓ 1/1
Hearing x 0/1
Comorbidities ✓ 1/1
Social
Small size of social ✓ for women 1/1
network only
Reduced social support x x✓* 1/2
Living alone ✓ for men 1/1
only
Emotional
Distress/depression ✓ ✓ ✓ 3/3

NOTE. Empty cells: Factor not explored.

Abbreviations: x factor explored but not associated with HRQL; ✓, factor associated with HRQL; ✓, factor predictive of HRQL in multiple regression model; ✓*, only the information
support and social companionship subscales of the Medical Outcomes Studies Social Support Scale were associated with HRQL; ✓†, there was a significant sex ⫻ aphasia
interaction, with women with severe aphasia having considerably lower scores than men; and women with mild or no aphasia having higher scores than men; SEC,
socioeconomic class.

ered severity of stroke. Still, our findings suggest that stroke
outcome studies that selectively exclude people with aphasia are
likely to suffer from selection bias and to report optimistic results.
Longitudinal studies are needed to begin to unravel the impact of
severe aphasia as opposed to the impact of severe stroke.
The presence of other medical problems and activity levels
has been consistently identified as the predictors of HRQL in
stroke studies.21,28,89,90,99 In terms of other medical problems,
our findings are limited by comprising only very specific prob-
lems in 1 study73 (near vision, hearing) and number—rather
than nature— of comorbid conditions in the other.77 Comorbid
conditions need to be considered in studies of HRQL to iden-
tify if any specific ones (diabetes, heart disease) have a greater
impact than others, and need to be controlled for as potential
confounders when other factors, such as age, are considered. In
terms of functional status/activity level, our findings are limited
because only 1 study77 considered this variable with a validated
scale in a regression model. Still, activities and working toward
goals and dismantling barriers faced by people with aphasia
emerged as important themes in the reviewed qualitative stud-
ies. Moreover, evidence from other studies suggests that people
with aphasia perform fewer social activities than healthy con-
trols,100 and stroke survivors without aphasia7 feel their social
participation is often characterized by a lack of engagement
and integration and feelings of exclusion.101
Social support was identified as an important theme in the
included qualitative studies and was considered in 3 of the
quantitative studies, but each considered different aspects:
social network (important for women only78), perceived social
support (informational support and social companionship were
associated with HRQL78), and living alone (associated with
poorer HRQL for men only82). Any conclusions from this
evidence are limited. However, related studies have shown that
low satisfaction with one’s social network has been associated
with poor life satisfaction poststroke11,12 and, in combination
with loneliness, is predictive of depression poststroke.102 In
another study, being a housewife and an inability to work
predicted depression, which in turn was a main predictor of
HRQL.21 A recent study exploring why people lose friends
poststroke identified the following as the main reasons: loss of
shared activities, reduced energy levels, physical disability,
aphasia, unhelpful responses of others, environmental barriers,
and changing social desires.103 Given the links between dimin-
ishing social networks and depression and HRQL poststroke,
research on what interventions can support people to maintain
their social networks seems worthwhile.
Limitations and Strength of Evidence
Overall, the reviewed evidence is not sufficiently robust to
determine with confidence the comparative importance of dif-
ferent predictors of HRQL. From the quantitative studies, only
2 studies73,77 generated regression models, both were cross-
sectional with people with chronic aphasia and neither included
age and stroke severity in the regression model. Three stud-

Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012

 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari
ies76,81,85 included longitudinal data, but all lost more than 40% to
follow-up. Selection bias was an issue in 6 reports with studies
excluding people based on age,73,75,82,84 type of aphasia,85 or
missing data on outcome measure.76 In the qualitative studies,
sample representativeness was also an issue74,80 and none suffi-
ciently addressed data saturation or credibility of findings.
At the review level, this report is, to our knowledge, the first
synthesis of research on predictors of HRQL in people with
aphasia. A strength of the review is the inclusion of both
quantitative and qualitative studies with the latter giving more
prominence to the voice of people with aphasia. Our literature
search aimed to be as inclusive as possible. Given the expected
heterogeneity of studies in this area, and the wide range of
outcome measures of interest, we had no restrictions for study
designs or outcome measures. Secondly, because of the diver-
sity of the vocabulary used to refer to HRQL, we included a
range of related terms in our search. This may have made the
search strategy inefficient and burdensome, but its inclusive-
ness increased our confidence that we have overlooked few
eligible studies. A limitation is that our search was restricted to
the English language.
CONCLUSIONS
Design and quality limitations of the included studies mean
that the existing evidence is not strong enough to determine the
main predictors of HRQL in people with aphasia poststroke.
Factors that have consistently emerged as important are emo-
tional distress/depression, extent of aphasic impairment and
communication disability, and, to a lesser extent, presence of
other medical problems, activity levels, and aspects of social
network and support. There is a need for further research, first
to explore these factors in detail and determine the main
predictors of HRQL, and second to identify what interventions
can best address these.
We found a number of studies on HRQL after stroke that could not
be included in this review because of their limited reporting regarding
people with aphasia. There is a need for longitudinal studies of
predictors of long-term outcome and HRQL in stroke to (1)
include people with aphasia and (2) report findings for them.
The current practice of selectively, including people with
aphasia with no explicit criteria for inclusion, and either
analyzing proxy data alongside self-report data or reporting
no data for people with aphasia, has resulted in a limited
understanding of what determines their HRQL. Adaptive
methods can be used to allow people with aphasia to com-
plete self-report measures, such as using interviewer admin-
istration to facilitate their communication and modifying the
presentation of measures (using large font, printing key
words in bold, printing few items per page, using practice
items).102,104,105
Lastly, interventions that aim to improve HRQL for people with
aphasia by specifically targeting factors that affect HRQL (eg,
depression, communication disability, engagement in activities,
diminishing social networks) need to be systematically evaluated.
At present there is preliminary promising evidence for group
therapy in terms of psychosocial benefits106-108 and improved
social participation and social connection compared with con-
trols,109 impairment-based therapy for word finding difficulties,110
and models of community service provision,40,111-114 but a
lack of appropriate controls limit the validity of the results.
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S95.e1 HEALTH-RELATED QUALITY OF LIFE IN APHASIA, Hilari

SUPPLEMENTAL APPENDIX 1: FULL DETAILS OF FACTORS EXPLORED, OUTCOMES USED, AND MAIN FINDINGS
OF INCLUDED STUDIES
Study Factors Explored Outcomes and Results

Bose et al72 Demographic Respondent

Age, educational level Self-report
Stroke-related Outcomes
Time post onset Primary outcome measure(s)/methods
Stroke sequelae SAQOL-39 and the QCL
Aphasia severity (based on Boston Main findings
Diagnostic Aphasia Compared with control participants, HRQL was lower in participants with aphasia, with the
Examination) communication subdomain of SAQOL-39, and socialization/activities subdomain of QCL
Naming performance (BNT) being the most affected areas of functioning.
Aphasia severity correlated strongly with the communication and psychosocial subdomains of
SAQOL-39 as well as the socialization/activities subdomain of QCL. Naming performance was
strongly correlated with the psychosocial subdomain of SAQOL-39, the socialization/activities
subdomain of QCL, and overall aphasia severity. Participant age, level of education, and
months post onset did not correlate with any variables.
Cruice et al73 Other medical Respondent
Pure tone audiometry Self-report
Visual acuity letter chart Outcomes
Near vision chart Primary outcome measure(s)/methods
Social/work SF-36
SOCACT Dartmouth COOP charts
Stroke sequelae “How I feel about myself” well-being scale
Aphasia: Language impairment Main findings
(WAB, BNT) and For SF-36: emotional health and younger age predicted better mental health. Near vision and
communication disability emotional health were the strongest predictors of the General Health and Social functioning
(CADL-2, COMACT) domains of the SF-36.
Emotional/psychological For Dartmouth COOP charts: better language, better functional communication, and more social
GDS activities were positively associated with better social health, emotional health, and quality
of life on the Dartmouth COOP charts.
For well-being scale: near vision predicted independence (total well-being, autonomy, and
environmental mastery) and language and communication functioning predicted fulfilment
(personal growth, positive relations with others, and self-acceptance).
NB SOCACT and COMACT are not validated scales. No findings on these are reported here.
Cruice et al74 Respondent
Self-report
Outcomes
Primary outcome measure(s)/methods
Content analysis of structured interviews based on 6 questions: (1) describe the quality of your
life; (2, 3) what things give and what things take away quality from your life; (4, 5) what
would make the quality of your life better/worse; and (6) does communication have an
impact on the quality of your life and how.
Main findings
Activities, verbal communication, people, and body functioning were the core factors in QOL for
these participants, and they described how these factors both contributed quality in life and
detracted from life quality. Other factors that influenced QOL included stroke, mobility,
positive personal outlook, in/dependence, home, and health.
Cruice et al75 Emotional/psychological Respondent
Depression: the 15-item version of Self-report
the GDS
Outcomes
Primary outcome measure(s)/methods
SF-36
Main findings
No significant differences between people with aphasia and controls on the SF-36 physical
functioning, role physical, body pain, general health, vitality, and social functioning.
Significant differences between people with aphasia and controls on SF-36 role emotional and
mental health.
Depressed aphasic participants had significantly worse HRQL on the SF-36 (except for pain and
role emotional) than nondepressed aphasic participants.
Nondepressed aphasic participants had significantly worse HRQL on the SF-36 (except for
general health) than nondepressed controls.
NB: significant differences on demographics: aphasic participants significantly younger and
with fewer years of education than controls. Nondepressed aphasic participants significantly
younger than depressed aphasic participants. Nondepressed aphasic participants were
significantly younger and significantly more depressed than nondepressed controls.
Franzén- Demographic Respondent
Dahlin Sex Self-report
et al76 Stroke sequelae Proxy: Patients from both groups may have had assistance from relatives in filling out the
Aphasia presence questionnaire and only those who returned a completed form were included in the study.
Aphasia severity Outcomes
Primary outcome measure(s)/methods
Nottingham Health Profile
Other medical Main findings
Heart failure In stroke patients, the severity of aphasia in the acute phase was significantly correlated to pain
(r⫽⫺.30, P⬍.05) and mobility, social, emotional, and total scores (r⫽–.46, –.37, –.37, and –.35,
respectively; all P⬍.01). After 6mo, there were still significant correlations in the social and
emotional domains (r⫽–.36 and .36, respectively; P⬍.05) and in mobility and total score
(r⫽–.60 and –.40, respectively; P⬍.01). Improvement in severity of the disease is not
necessarily accompanied by improvement in HRQL. No differences were found between men
and women in the stroke group.

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SUPPLEMENTAL APPENDIX 1 (Cont’d): FULL DETAILS OF FACTORS EXPLORED, OUTCOMES USED, AND MAIN FINDINGS
OF INCLUDED STUDIES
Study Factors Explored Outcomes and Results

Hilari et al77 Demographic Respondent

Age, sex, ethnicity, marital status, Self-report
employment status, and SES Some proxy ratings were taken but these were not included in the results of this study and
were written up separately (see Hilari and Byng79 below).
Stroke-related Outcomes
Stroke type Primary outcome measure(s)/methods
Time postonset SAQOL-39
Stroke sequelae Main findings
Communication disability (ASHA- In univariate analyses, age, comorbidities, emotional distress, activity level, communication
FACS) disability, and cognitive impairment were significantly associated with HRQL. In regression
Cognitive level (Standard analysis, emotional distress, involvement in home and outdoors activities, extent of
Progression Matrices grade) communication disability, and number of comorbid conditions explained 52% of the variance
Other medical in HRQL (adjusted R2⫽.52). Stroke type (infarct vs hemorrhage), time postonset, and
Number of comorbidities demographic variables (sex, ethnicity, marital status, employment status, and socioeconomic
Social/work status) were not significantly associated with HRQL in these participants. Conclusions:
Level of home and outdoors increased distress, reduced involvement in activities, increased communication disability,
activities (Frenchay Activities and comorbidity predict poorer HRQL in people with chronic aphasia after stroke.
Index)
Social support (MOS SSS)
Emotional/psychological
Depression/emotional distress
(General Health Questionnaire)
Hilari and Demographic Respondent
Northcott78 Sex Self-report
Social/work Outcomes
Perceived social support (MOS Primary outcome measure(s)/methods
SSS) (including subscales) Main findings
Social network size SAQOL-39
Frequency of social contacts Size of network: not significantly correlated with HRQL (associated with HRQL for women only),
nor were any of the individual components of the network.
Frequency of contact: participants with the highest HRQL scores saw their children at the same
frequency as before. Those who saw their children less than before had lower HRQL scores
and those who saw them more had the lowest HRQL scores. Same pattern with relatives.
With friends, those who saw them more had the highest scores; those who saw them less
had the lowest scores (though these results not significant).
Perceived social support: overall SSS did not significantly correlate with HRQL. Two types of
support (SSS subscales) were significantly correlated with HRQL: social companionship and
informational support.
Hilari and Stroke sequelae Respondent
Byng79 Aphasia severity (FAST) and Proxy
communication disability Proxy participants were nominated by the person with aphasia and had to be in daily face-to-
(ASHA-FACS) face contact with the person with aphasia for at least 2y. Proxy respondents in this study
were close friends or relatives of the PWA, with the exception of 1 who was a key worker.
Eight of them were women. Four were related to the person with aphasia.
Outcomes
Primary outcome measure(s)/methods
SAQOL-39
Main findings
People with severe aphasia’s QOL, as measured by their proxies (n⫽12), was low and more
than 1 SD below that of the standardization sample of the SAQOL. The overall mean score
for the SAQOL-39 and the means for its physical and communication domains were below
the 20th percentile. They were also significantly lower than those of the comparison studies
of self-reports (n⫽83) and proxy ratings (n⫽50) of people with mild or moderate aphasia
(P⫽.003). In the comparison studies there were no significant differences between the self-
report and proxy ratings of people with mild or moderate aphasia. Conclusions: this small
study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is
severely compromised.
Hinckley80 Respondent
Self-report
With editorial assistance
Outcomes
Primary outcome measure(s)/methods
Ethnographic data extraction from published personal accounts of living with aphasia
Main findings
Four themes emerged. First, social support was identified as a critical factor in living
successfully. Second, successful living appears to require an adaptation of one’s perception
of self. Third, most of the writers of the accounts looked to the future and set new goals.
Finally, all of the published accounts noted the importance of taking charge of one’s own
continued communication improvement.

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SUPPLEMENTAL APPENDIX 1 (Cont’d): FULL DETAILS OF FACTORS EXPLORED, OUTCOMES USED, AND MAIN FINDINGS
OF INCLUDED STUDIES
Study Factors Explored Outcomes and Results

Manders et Stroke-related Respondent

al81 Time postonset Self-report
Demographic Outcomes and results
Age Primary outcome measure(s)/methods
Sex SAQOL-39
Education status Main findings
Marital status People with aphasia had significantly worse HRQL on all SAQOL-39 scores than the healthy
Stroke sequelae controls. They also had significantly worse scores on the SAQOL-39 overall scale and the
Functional Status: FIM communication and psychosocial domains than the people with acquired brain damage but
Aphasia: Aachen Aphasia Test no aphasia.
Social/work Within the group of people with aphasia, those who were more than 6mo postonset had
Degree of social support significantly better scores than those who were earlier postonset on the physical domain of
experienced (questionnaire based the SAQOL-39 and the overall scale. Older people had significantly worse HRQL on all
on the general health inquiry – SAQOL-39 scores except for energy. Women rated the physical, psychosocial, and overall
Belgium and on the MOS SSS). HRQL as significantly worse than men. Aphasic participants who had not finished high-
school evaluated their life quality significantly lower than higher educated groups. There was
also a strong positive correlation between FIM scores and SAQOL-39 scores.
Nagayoshi et Demographic Respondent
al82 Age Self-report
sex For controls and those without severe aphasia
Stroke-related Proxy
Time poststroke For those with severe aphasia. SLT acted as proxy.
Stroke sequelae Outcomes
Presence and severity of aphasia Primary outcome measure(s)/methods
Hemiparesis Satisfaction in Daily Life scale
Social/work Main findings
Living conditions (alone, with Life satisfaction was significantly worse for stroke participants than community-dwelling
spouse, with other) elderly.
Living condition (living alone) had a significant negative effect on the external aspects of life
satisfaction (partner/family relationships, economic state and social security, and house
facilities) for the participants who were men.
Within the stroke group, those without hemiparesis and without aphasia had significantly
higher life satisfaction than those with hemiparesis and those with aphasia. There was a
significant sex x aphasia interaction for external aspects of life satisfaction, with women with
severe aphasia having considerably lower scores than men; and women with mild or no
aphasia having higher scores than men.
Parr et al83 Respondent
Self-report
Outcomes
Primary outcome measure(s)/methods
In depth interviews with people with aphasia which covered, among other things, the impact of
aphasia on work, education, finances, leisure pursuits, and personal relationships, the
meaning of aphasia, and the disabling nature of aphasia.
Main findings
Factors that would make people with aphasia feel less disabled were: educating other people
and those providing services about aphasia (removing environmental and structural
barriers), promoting awareness of aphasia to tackle attitudinal barriers; and making
information more easily accessible (removing informational barriers). Learning to live with
aphasia involves a sound understanding of aphasia, developing a strong personal identity,
and finding others with aphasia to develop a collective identity and share responsibility with
nonaphasic people to dismantle the barriers identified above.
Ross and Stroke sequelae Respondent
Wertz84 Language impairment (WAB, Self-report
Porch Index of Communicative Outcomes
Ability). Communication activity Primary outcome measure(s)/methods
limitations (CADL-2, ASHA-FACS) WHOQOL Bref and Psychological Well-being Index.
Main findings
Within the aphasic group there were no significant relationships between language impairment
and QOL; and communication disability and QOL. There were no significant differences
between the groups in the strength of the relationships between language impairment,
communication disability, and QOL. Participants with aphasia had significantly worse QOL
(WHOQOL Bref) than NBI controls.
NB: PWI is not a validated scale therefore no results on it are reported.

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SUPPLEMENTAL APPENDIX 1 (Cont’d): FULL DETAILS OF FACTORS EXPLORED, OUTCOMES USED, AND MAIN FINDINGS
OF INCLUDED STUDIES
Study Factors Explored Outcomes and Results

Sarno85 Demographic Respondent

Age Self-report
Stroke-related Assumed to be self-report, but not clearly stated whether other respondents (proxy) were used
Time (from 3 to 6mo, 9mo, 12mo) for people with global aphasia.
Stroke sequelae QOL measured with FLS
Type of aphasia (fluent, nonfluent, Other outcomes
global) Outcomes
Primary outcome measure(s)/methods
Aphasic Language Impairment (NCCEA)
Functional communication (FCP)
Carers’ ratings of cognitive, mood, and social functioning (GERRI)
Main findings
Data were analyzed with MANOVA. There was no significant effect of age on any of the
outcomes used. There was a significant main effect for time in both fluent and nonfluent
groups on language performance, functional communication, and QOL in the first poststroke
year.
The fluent-aphasia group improved significantly in functional communication as measured by
the FCP and in QOL (all FLS subscores, except for ADL and Home Activities).
The nonfluent aphasia group improved significantly in all NCCEA language measures, in
functional communication (FCP subscores) and QOL (all FLS subscores except Cognitive,
ADL, and Social Activities).
The global aphasia group did not make statistically significant changes over the first year on
the language tasks measured, but they did on functional communication (all FCP subscores
except for Speaking and Movement). There were no significant changes on QOL (except for
FLS Self-initiation).
There were no significant changes on the GERRI for any of the aphasia groups.

Abbreviations: ADL, activities of daily living; ASHA-FACS, American Speech and Hearing Association –Functional Assessment of Communication Skills for adults; BNT, Boston
Naming Test; CADL-2, Communication Activities of Daily Living-2; COMACT, Communication Activities Checklist; COOP, care cooperative; FAST, Frenchay Aphasia Screening
Test; FCP, Functional Communication Profile; FLS, Functional Life Scale; GDS, Geriatric Depression Scale; GERRI, Geriatric Evaluation of Relatives Rating Instrument; MANOVA,
multivariate analysis of variance; MOS, Medical Outcomes Studies; NBI, nonbrain-injured; NCCEA, Neurosensory Center Comprehensive Examination for Aphasia; PWA, people
with aphasia; PWI, Psychological Well-Being Index; QCL, American Speech Language Hearing Association’s Quality of Communication Life Scale; QOL, quality of life; SAQOL-39,
Stroke and Aphasia Quality of Life Scale-39; SES, socioeconomic status; SF-36, Medical Outcomes Study 36-Item Short-Form Health Survey; SLT, Speech and Language Therapist;
SOCACT, Social Network Analysis, Social Activities Checklist; SSS, Social Support Scale; WAB, Western Aphasia Battery; WHOQOL Bref, World Health Organization Quality of
Life Brief.

Arch Phys Med Rehabil Vol 93, Suppl 1, January 2012