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A review of psychological correlates of adjustment in patients with multiple sclerosis
Dennison L, Moss-Morris R, Chalder T. A review of psychological correlates of
adjustment in patients with multiple sclerosis. Clinical Psychology Review 29, 141-153
(2009). doi:10.1016/j.cpr.2008.12.001
A review of psycholgical correlates of adjustment in patients
with multiple sclerosis
Laura Dennison, Rona Moss-Morris and Trudie Chalder
Multiple Sclerosis (MS) is a chronic neurological disease which poses significant
psychological adjustment challenges. The purpose of this systematic review was to
identify factors that are related to adjustment in people with MS and may be modifiable
through psychological intervention. It aimed to gain an overview of the strength of
evidence for relationships between psychological factors and adjustment and identify
limitations to existing studies and directions for future research. Seventy two studies met
inclusion criteria and were included in the review and a narrative synthesis was
conducted. A wide range of psychological factors have been studied in relation to
adjustment outcomes. The strongest and most consistent finding was that perceived
stress and certain emotion-focussed coping strategies are related to worse adjustment in
MS. Uncertainty was fairly robustly associated with worse adjustment. There was also
more tentative evidence available for relationships between adjustment outcomes and a
range of other factors including social support and interactions with others, cognitive
errors and biases, illness and symptom cognitions, control perceptions, positive
psychology factors, and health behaviours. Implications for therapeutic interventions are
discussed and a preliminary model of adjustment to MS is outlined. In light of the
shortcomings of extant studies, suggestions for future research are offered.
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Introduction
Multiple Sclerosis (MS) is a chronic progressive degenerative neurological
disease that produces demyelination of the central nervous system. It is thought to affect
more than 2.5 million people worldwide and around 400,000 people in the United States
currently live with the disease (National MS Society, 2008). MS typically has its onset in
early adulthood, and affects more women than men. Although rarely fatal, MS produces
a range of unpleasant and disabling symptoms. The course of MS is idiosyncratic and
unpredictable, the exact causes are poorly understood, and there is no known cure.
MS poses multiple challenges for both physical and psychological well-being.
People with MS experience unpleasant and unpredictable symptoms, difficult treatment
regimes and drug side effects, and increasing levels of physical disability. They also face
psychosocial consequences including disruptions to life goals, employment, income,
relationships, leisure activities and daily living activities. Psychological difficulties are
extremely common in MS compared to both healthy populations and other chronic
diseases. The empirical literature attests to elevated rates of depression and distress
(Janssens et al., 2003), increased anxiety (Zorzon et al., 2001), low subjective well-being
and quality of life (Benito-Leon, Morales, Rivera-Navarro, & Mitchell, 2003; Janssens et
al., 2003), and social role and relationship difficulties (Hakim et al., 2000; Mohr et al.,
1999b). Nonetheless, a substantial proportion of people with MS manage to adapt well to
living with the illness (Antonak & Livneh, 1995; Brooks & Matson, 1982).
Illness factors such as extent of neurological disability, symptom severity,
remission status and length of illness can influence levels of psychological adjustment in
MS (Chwastiak et al., 2002; McIvor, Rikland & Reznikoff, 1984). However, these
factors are inconsistently associated with adjustment, and are often only modest
predictors (e.g. Jopson & Moss-Morris, 2003). Research demonstrates that psychological
factors are often better predictors of individual differences in adjustment than illness
factors (McIvor, 1984; Thomas, Thomas, Hiller, Galvin, & Baker, 2006). Psychological
factors, unlike illness factors, are potentially modifiable through psychological
interventions
A review of psychosocial aspects of MS (Mohr & Cox, 2001) summarised
research on the role of coping strategies in adaptation to MS. However, this review was
not systematic or exhaustive, and focussed on coping rather than a broader range of
psychological factors. Recent years have seen a growth in research investigating such
psychological factors. As multiple similar studies accrue, a review and synthesis of the
research becomes increasingly important.
Two recent reviews of psychological interventions for people with MS have
concluded that there is some evidence that Cognitive Behaviour Therapy (CBT)
approaches are effective for treating depression in MS (Malcomson, Dunwoody, &
Lowe-Strong, 2007; Thomas et al., 2006). However, existing CBT trials give little
information about which psychological factors were targeted within interventions, and
how these factors are related to adjustment outcomes. The reviews suggested that further
work on psychological factors involved in adjustment outcomes is warranted
The purpose of the current review was to systematically identify existing literature
which addressed psychological factors that may be associated with, predict, or explain
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A review of psychological correlates of adjustment in patients with multiple sclerosis
adjustment outcomes in MS. The aims were to a) gain an overview of the strength of
evidence for relationships between psychological factors and adjustment outcomes in
MS, and b) identify methodological problems, gaps within the literature, and directions
for future research. The authors were interested in establishing which psychological
variables might serve to explain or predict differences in how well people adjust to living
with MS. A reliable overview of the field of research would allow therapists involved in
psychotherapy and counselling to gain an understanding of factors that are linked to l
adjustment in MS, so that these could be targeted in interventions.
For the purposes of this review psychological factors were conceptualised as
potentially modifiable factors relating to the individual’s attitudes, thoughts, feelings, and
behaviours that would be relevant and possible to address in a psychological intervention.
The adjustment outcomes of interest were psychosocial outcomes such as psychological
or emotional well-being, quality of life, or the subjective impact of the illness on life
domains.
Method
Search Strategy
Electronic databases (MEDLINE, EMBASE, Web of Science, CINAHL and
PsychINFO) were searched for studies published in English between 1980 and April
2007 that examined psychological factors relating to adjustment outcomes in MS. Search
terms1 were customised to each database and involved combining key word searches for a
list of adjustment terms (e.g. ‘psychosocial adjustment’, ‘depression’, ‘quality of life’,
‘emotional adjustment’), terms such as ‘determin$’, ‘predict$’, ‘correlat$’, and the term
‘Multiple Sclerosis’. After removing duplicates 677 articles remained. Initial inspection
of these abstracts found that 575 did not address the research question. However 102
were potentially relevant. Full versions of these articles were obtained and reviewed
against inclusion criteria.
Studies were included if they were published empirical quantitative research
reports examining psychological factor/s relating to adjustment outcomes in people with
MS. Where studies involved control or comparison groups, results for the MS
participants had to be reported separately. A number of methodological quality criteria
were applied; studies were excluded if they did not analyse data through appropriate
inferential statistics or did not use published or appropriate and replicable multi-item
measures to assess both psychological factors and adjustment outcomes. Intervention
studies were not included in this review. Uncertainties concerning whether a study met
inclusion criteria were resolved through discussion between the authors.
Fifty nine of the papers identified through the electronic searches were ultimately
included in the review. Examination of the reference lists of included articles obtained
another 24 potential articles of which ten met inclusion criteria. Hand-searching the three
journals which published the largest number of identified studies located three more
studies which were obtained and scrutinized; two met inclusion criteria. One additional
paper was identified, reviewed and included following examination of the reference lists
of these articles.
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Data Extraction
The search strategy resulted in identifying a total of 72 studies to be included in
the review. Information from each study that was relevant to the research question and in
line with inclusion criteria was extracted and tabulated2. Extracted data comprised
publication data, sample characteristics, study design and methodology, measures used to
gauge psychological factors and adjustment outcomes, and key findings.
Synthesis
The broad and multifaceted nature of the research question and the heterogeneity
of included studies precluded meta-analysis. Therefore, a narrative synthesis was
conducted, guided by methods described by Popay et al. (2006). Psychological factors
were grouped into overarching conceptually or thematically related categories. Minireviews on each category of predictors were then conducted. The importance of each
psychological factor was considered by combining a count of the studies that identified or
did not identify significant relationships with attention to their methodological quality.
Patterns in the data were examined and possible sources of heterogeneity between studies
were explored including moderators of results such as size, or methodology.
Consideration was also given to identifying discrepancies, uncertainties, and unanswered
questions.
Results
Overview
The majority of studies were cross-sectional (N=58). Usually, self-report
questionnaires were used to measure both psychological factors and adjustment
outcomes. Results reported were typically correlations or regression analyses. Most
sample sizes were between 50 and 150 (N=40). However, a few were less than 25 or
more than 500. All samples included more women than men. Mean age typically fell
between 41 and 50. 48 studies reported mean time since diagnosis for the sample. Many
used samples where patients had been diagnosed an average of 7 to 11 years previously
(N=27). Few samples had a mean diagnosis of less than five years or more than fifteen
years previously. Only 19 studies reported mean levels of neurological impairment. Of
these, most people with MS in the samples had moderate disability but were able to walk
without aid for around 200 meters.
The included studies examined an array of adjustment outcomes. Depression was
the most common outcome of interest, although other aspects of mental health and factors
such as quality of life (QoL), relationship satisfaction, social adjustment, and life
satisfaction were also studied.
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Table 1: Psychological factors examined in relation to adjustment outcomes
Category
Psychological factor
N
studies
Study reference number/sa
Stress and
Coping
Perceived Stress
11
Stress Appraisal
Coping strategies
3
30
Perceived social support
14
Relationship characteristics
Partner/Spouse responses
Family characteristics
Dysfunctional
cognitions/thinking errors
Negative attributional style
Affective memory biases
Illness representations
Illness uncertainty
Helplessness
Symptom attribution
Cognitive and behavioral
responses to symptoms
Pain-related cognitions
Hypochondriac beliefs
Control
Self-efficacy
Outcome expectancies
Optimism
Hope
Benefit finding
Acceptance
Spirituality
Health behaviors
Perceived barriers to health
behaviours
Magical ideation
Denial
Personality traits
Neuroticism
1
1
2
3
1,11,14,24,28,35,45,50,53,54,
61,
44,45,70
1,2,3,5,7,12,13,18,19,20,25,26,
28,29,30,31,32,33,34,35,36,39,
40,43,44,45,46,49,70,71
11,14,24,32,37,43,45,50,53,56,
57,61,62,68
61
57
28,57
22,58,59
1
1
2
9
4
1
1
23
6
21,55
15,25,26,38,41,68,69,70,71
22,58,59,66
64
60
1
1
5
10
1
5
3
3
2
2
4
2
43
64
9,16,18,27,28
4,8,12,13,52,58,59,61,62,67
67
7,8,12,13,15
18,26,51
47,48,49
10,17
5,38
17,61,62,63
61, 62
1
1
1
1
65
42
72
66
Social Support
and interactions
with others
Cognitive models
of
Psychopathology
Illness and
symptom
cognitions
Perceptions of
control and selfefficacy
Positive
Psychology
Health behaviors
Miscellaneous
a
Study reference numbers correspond to the table of included studies - from the
corresponding author upon request
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Table 1 depicts the wide selection of psychological factors examined within the
72 included studies. The remainder of the results section summarises and synthesises
findings regarding the relationships between psychological factors (grouped into
thematically or conceptually-related categories) and adjustment outcomes. Given the
large number of studies reviewed, thorough discussion of individual studies is beyond the
scope of this report. The focus is therefore on providing a broad overview of the evidence
available to date including the theoretical or conceptual backgrounds of the research.
The results are considered under eight sections:
1) Stress and Coping
2) Social Support and Interactions with Others
3) Cognitive Models of Psychopathology
4) Illness and Symptom Cognitions
5) Perceptions of Control and Self-efficacy,
6) Positive Psychology
7) Health Behaviours
8) Miscellaneous Factors.
1. Stress and Coping
The stress-coping model of Lazarus & Folkman (1984) is one of the dominant
paradigms in the field of psychosocial adjustment to chronic illness. According to this
model, adjustment in the face of difficulties is influenced by the individual’s evaluations
and appraisals of stressors, and the coping strategies they use for managing these
demands. The following sections deal first with the appraisal aspect of the model and
then the coping aspects.
Stress perception and appraisal.
Experiencing stressful life events may be associated with more adjustment
difficulties. However, since this review was concerned with modifiable psychological
factors, we did not examine studies that simply investigated occurrence or frequency of
life events. Included studies which investigated stress had to gauge the subjective,
perceived degree of stress reported by the participant. Eleven such studies were reviewed
(Table 1).
Across studies, high perceived stress was associated with worse adjustment. This
link was found across types of perceived stress (e.g. MS-related stress, everyday hassles,
ongoing general stress, psychosocial stress or financial stress). The stress-adjustment
relationship was also evident across a wide range of outcomes: depression (Aikens,
Fischer, Namey, & Rudick, 1997; Gilchrist & Creed, 1994; Pakenham, 1999; Patten,
Metz, & Reimer, 2000), anxiety disorders (Korostil & Feinstein, 2007), psychopathology
(Ron & Logsdail, 1989), mood, life satisfaction and psychological well-being (Marks &
Millard, 1990), suicidal intent (Feinstein, 2002), QoL (McCabe & De Judicibus M., 2005;
Rumrill, Jr., Roessler, & Fitzgerald, 2004; Stuifbergen, 1995), distress (Pakenham, 1999)
and social adjustment (Pakenham, 1999).
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A review of psychological correlates of adjustment in patients with multiple sclerosis
In the only longitudinal study, perceived life stress was strongly associated with
depression, both concurrently and prospectively, predicting 34% of its variance at
baseline and 19-20% at six and twelve months (Aikens et al., 1997). Out of the seven
cross-sectional studies that performed regression analysis, perceived stress explained a
significant proportion of the variance in at least some of the adjustment outcomes
examined in five studies (Aikens et al., 1997; McCabe et al., 2005; Pakenham, 1999;
Patten et al., 2000; Rumrill, Jr. et al., 2004) whilst two studies found it was not an
important predictor (Feinstein, 2002; Stuifbergen, 1995). Three studies accounted for
disease severity in their models and two of these still identified perceived stress as a
predictor (Aikens et al., 1997; Pakenham, 1999).
Three studies specifically examined the link between cognitive appraisal of MSrelated stressors, and levels of adjustment (Table 1). Appraisal involves an interpretation
of a stressor; including appraisal of threat, challenge and controllability (Lazarus et al.,
1984). In the only longitudinal analysis appraisal did not predict change in adjustment
outcomes at 12 months; baseline levels of adjustment predicted the majority of the
variance (Pakenham, 1999). However, all three studies found that appraisal was related
to concurrent adjustment after taking into account MS severity; threat appraisals were the
most important type of appraisal and were consistently related to worse adjustment.
Appraisal explained 29% of variance in emotional well-being (Wineman, Durand, &
Steiner, 1994) and between 6% and 14% of variance in depression, distress and social
adjustment (Pakenham, 1999; Pakenham, Stewart, & Rogers, 1997).
Coping strategies.
Coping strategies are the conscious efforts an individual makes to manage internal
or external stressors that they perceive as taxing their existing resources (Folkman &
Lazarus, 1991). Although a number of different ways of categorizing and measuring
coping strategies exist, coping theorists often broadly classify coping attempts into
emotion-focused or problem-focused strategies (e.g. Lazarus et al., 1984). Emotionfocused strategies are directed at reducing the emotional distress elicited by the stressful
situation, whereas problem-focused strategies are directed at altering the source of stress.
Thirty reviewed studies considered the relationships between coping strategies
and adjustment outcomes (Table 1). Links were consistently demonstrated between
choice of coping strategy and a range of adjustment indices including depression,
distress, anxiety, QoL, relationship satisfaction, and social adjustment. Across studies,
use of certain emotion-focussed strategies was consistently and strongly related to
negative adjustment outcomes. Specifically, wishful thinking (e.g. hoping a miracle
might happen) and escape-avoidance coping (e.g. trying to forget the whole thing) were
regular and strong correlates or predictors of worse adjustment (Aikens et al., 1997;
Arnett, Higginson, Voss, Randolph, & Grandey, 2002; Beatty et al., 1998; de Ridder,
Schreurs, & Bensing, 2000; Fournier, de Ridder, & Bensing, 1999; Fournier, de Ridder,
& Bensing, 2002; Jean, Beatty, Paul, & Mullins, 1997; Jean, Paul, & Beatty, 1999;
Kroencke, Denney, & Lynch, 2001; Lynch, Kroencke, & Denney, 2001; McCabe, 2006;
McCabe, 2005; McCabe et al., 2005; McCabe & McKern, 2002; McCabe, McKern, &
McDonald, 2004; Mohr et al., 1999a; Mohr, Goodkin, Gatto, & Van der Wende, 1997;
Pakenham, 1999; Pakenham et al., 1997). In contrast, problem-focussed coping, seeking
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A review of psychological correlates of adjustment in patients with multiple sclerosis
social support (e.g. talking to someone to find out more about the situation) and the more
adaptive emotion-focussed strategy of positive re-appraisal (e.g. rediscovering what is
important in life) tended to relate to better adjustment (Aikens et al., 1997; Arnett et al.,
2002; Arnett & Randolph, 2006; de Ridder et al., 2000; Kroencke et al., 2001; Marks et
al., 1990; McCabe, 2006; McCabe, 2005; McCabe et al., 2005; McCabe et al., 2002;
McCabe et al., 2004; Mohr et al., 1999a; Mohr et al., 1997; Pakenham, 2001; Pakenham,
1999; Pakenham, 2006). However, the strength of these positive relationships tended to
be of a lesser magnitude than findings regarding the less adaptive emotion-focussed
coping strategies.
Although taken as a whole, findings regarding which types of coping are
associated with better or worse adjustment were consistent, findings about the
importance and strength of coping strategies as correlates or predictors of adjustment
were more mixed. Six studies reported simple correlations; four of which found clear and
consistent relationships between coping and outcomes Beatty et al., 1998; Jean et al.,
1999; Marks et al., 1990; Mohr et al., 1999a). Of the twelve cross-sectional regression
studies, nine found coping strategies predicted adjustment (Arnett et al., 2002; Kroencke
et al., 2001; Lynch et al., 2001; McCabe et al., 2005; McCabe et al., 2002; McCabe et al.,
2004; Osborne, Jensen, Ehde, Hanley, & Kraft, 2007; Pakenham, 2001; Pakenham et al.,
1997) whilst three did not (McCabe, 2002; Wineman et al., 1994; Wineman, Schwetz,
Goodkin, & Rudick, 1996). Out of six longitudinal regression studies, four demonstrated
that coping predicted future adjustment (Aikens et al., 1997; McCabe, 2005; Pakenham,
1999; Pakenham, 2006) whilst two found no such evidence (McCabe & Di Battista, 2004;
McCabe, McKern, McDonald, & Vowels, 2003).. There were large differences in the
reported amount of variance explained by coping strategies between studies. In
concurrent analyses variance explained ranged from 3% to 39%. In longitudinal analyses,
prior coping tended to play a smaller role accounting for 4% to 15% of the variance in
adjustment. Interestingly, of the seven studies that controlled for level of disability or
disease severity, five found coping was an important predictor, over and above this
influence.
Interpretation of the variability of reported findings is fraught with difficulties
because studies had multiple sources of heterogeneity. Studies differed widely in terms of
sample size (N= 31, Marks et al., 1990; N=502, Pakenham, 2006), factors controlled for
in regression analyses, types of adjustment outcomes assessed, coping instruments
employed, and the stressors or contexts with reference to which participants are asked to
describe their coping efforts. Studies also differed in whether they reported detailed
findings from specific coping strategy subscales (e.g. confrontive coping, distancing etc)
or only overall results from higher-order coping domains (e.g. problem or emotionfocussed). Potentially, these differences between studies might explain some of the
discrepancies in reported findings. However, scrutiny of the available data did not reveal
any clear relationships between such study features and results.
In summary, the stress studies were fairly consistent in demonstrating that high
perceived stress both correlates with, and predicts worse adjustment and is important
regardless of disease severity. Cognitive appraisal of the illness also appears to be an
important factor in adjustment; evaluation of the illness as threatening is associated with
worse outcome across several adjustment domains. However, only three studies were
reviewed and longitudinal evidence is lacking. Coping studies are plentiful and most
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A review of psychological correlates of adjustment in patients with multiple sclerosis
have demonstrated a consistent relationship between certain emotion-focussed coping
such as avoidance and wishful thinking and worse adjustment. Other strategies such as
positive reappraisal and seeking social support appear to be related to better adjustment.
However, beyond this general finding, there is little agreement between studies and their
considerable heterogeneity precludes clear statements regarding the strength of coping as
a predictor of adjustment.
2. Social Support and Interactions with Others
A key theme in the adjustment literature is the importance of support provided by
other people in protecting against or moderating the negative psychological impact of
physical illness. Fourteen of the reviewed studies (Table 1) examined links between
social support and a range of adjustment outcomes by using measures which gauge the
individual’s evaluations of whether support is available and satisfactory. Twelve out of
fourteen studies identified relationships between high perceived support and better
adjustment. Few studies reported its unique contribution as a predictor of adjustment,
although those that did found it predicted 2-9% of the variance in depression and mental
health after controlling for clinical and demographic factors (McCabe et al., 2004;
Pakenham, 1999; Schwartz & Frohner, 2005).
Despite studies being fairly consistent in discerning a support-adjustment
relationship much of the reviewed research is methodologically weak. All but one had
cross-sectional designs, reporting simple correlations without taking into account possible
confounding factors. Furthermore, four studies are problematic to interpret since they
employed a measure which combines social support and stress into one summary score
(Feinstein, 2002; Gilchrist et al., 1994; Korostil et al., 2007; Ron et al., 1989). The only
longitudinal study which controlled for the influence of disease severity and relevant
demographic variables and used a comprehensive social support measure, did not find
that social support played a strong role in adjustment (Pakenham, 1999). Unfortunately
the reviewed studies provide little detail regarding specific aspects of social support that
are important in adjustment. They have tended to link a generic social support score to
adjustment outcomes without examining details such as different support providers (e.g.
family, friends, medical professionals) or types of support (e.g. instrumental, physical
help or social companionship). One study that did separate social support into different
domains found interesting results. Perceived supportiveness bore little relation to the
adjustment outcome (depression) but perceived unsupportiveness was strongly linked to
worse depression (Wineman, 1990).
In a slightly different approach to the mainstream social support literature, a
handful of studies have examined specific features of relationships with others in relation
to adjustment. One study found that patients’ perceptions of reciprocity in relationships
were positively correlated with QoL whereas perceptions of conflict were negatively
correlated with QoL (Stuifbergen, 1995). In another study, perceived spouse responses to
their illness influenced the patient’s adjustment. Solicitous responses to disability were
associated with worse adjustment. Encouraging responses to well behaviours correlated
with lower depression, but negative responses to disability were associated with worse
mental health (Schwartz & Kraft, 1999). Two studies investigated perceptions of family
characteristics. In one study, MS patient-perceived family cohesion and expressiveness
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A review of psychological correlates of adjustment in patients with multiple sclerosis
was correlated with better outcomes on mood, life satisfaction and psychological distress
(Marks et al., 1990). In another, perceived conflict was related to worse mental health
whereas perceptions of family independence were related to better mental health
(Schwartz et al., 1999). Each of these studies consisted of cross-sectional evidence from
small samples and did not control for influences of disease severity. Nonetheless,
perceptions of relationship characteristics and other people’s responses seem to be related
to adjustment and merit further investigation.
In summary, despite some methodological weaknesses, available research is fairly
consistent in demonstrating that having satisfactory social support and positive
interactions with significant others is associated with better adjustment, while oversolicitous or critical responses are unhelpful for adjustment.
3. Cognitive Models of Psychopathology
Seven studies applied cognitive models of psychopathology to adjustment to MS
(Table 1). From this perspective, poor adjustment (in particular depressed mood) is seen
as resulting from distorted information processing in the form of cognitive biases or
errors (e.g. Beck, 1976).
One study found that a range of dysfunctional cognitions relating to
perfectionism, negative attributions, dependency and need for external sources of
approval were associated with depressive symptoms (Kneebone, Dunmore, & Evans,
2003). Two similar studies examined response to vignettes about both general and MSrelated situations (Shnek et al., 1997; Shnek, Foley, LaRocca, Smith, & Halper, 1995).
Cognitive errors such as catastrophizing, overgeneralization, personalization and
selective abstraction in response to the vignettes were positively correlated with
depression. However, when measures of helplessness and self-efficacy about MS was
included in the regression equation along with cognitive errors, helplessness became the
strongest predictor.
A separate study considered attributional style (Kneebone & Dunmore, 2004).
According to the helplessness theory of depression (e.g. Abramson, Metalsky, & Alloy,
1989) negative attributional style confers a vulnerability to depression and negative life
events interact with attributional style to explain depressive symptoms. Results of the
study showed that stable (the cause will continue to affect you) and global (the cause will
affect other areas of life) attributions of hypothetical problems were significant predictors
of depression. Furthermore, global attributions interacted with reported negative life
events (e.g. relapse) to predict depression.
Another study examined cognitive biases in relation to depression and pain
(Bruce, Polen, & Arnett, 2007). Negative affective memory biases, or the tendency to
recall more negatively valenced information, were positively correlated with depression.
Cognitive biases were unique predictors, and also interacted with pain to predict
depression; around 18% of variance was explained by cognitive biases, pain and their
interaction. Patients with negative biases experienced more depressive symptoms as pain
increased, whereas positive biases appeared to play a protective role.
Overall, research from a cognitive model of psychopathology perspective has
produced interesting results. However, few studies have yet been reported and
unsurprisingly they have all considered depression as the outcome of interest rather than
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A review of psychological correlates of adjustment in patients with multiple sclerosis
more broad adjustment outcomes such as well-being and QoL. Furthermore, since all
extant studies are cross-sectional it is impossible to conclude that cognitive errors or
biases preceded depression, rather than being a result of a depressive state.
4. Illness and Symptom Cognitions
Whereas clinical psychologists have focussed on understanding depression in MS
using cognitive models, researchers using health psychology models have studied a
number of illness-specific cognitive constructs that may be involved in adjustment (Table
1). The common sense model of illness (Leventhal, Nerenz, & Steele, 1984) proposes that
when faced with a health threat people construct their own representations or perceptions
of their illness which then guide their ways of responding, and ultimately their
psychological adjustment.
Two studies investigated illness representations in relation to adjustment in MS
and found discrepant results. In a longitudinal study representations were generally
unrelated to concurrent and later depression, after accounting for demographic factors
(Schiaffino, Shawaryn, & Blum, 1998). The other study (Jopson et al., 2003) was crosssectional and used a more established measure of illness representations, the Illness
Perceptions Questionnaire Revised (Moss-Morris, Weinman, Petrie, Horne, & Cameron,
2002). This study found a strong role for illness representations; they predicted
significant variance in a variety of adjustment outcomes, ranging from 11% of subjective
physical dysfunction to 52% of emotional response to illness. Most findings held when
ambulatory ability was factored in. Different illness representations were differentially
important for different adjustment domains. However, certain representations were
consistently associated with worse adjustment: a tendency to attribute a wide range of
symptoms to MS, beliefs of lack of personal control over the illness, perceptions of
severe illness consequences, representations of a cyclical illness timeline, believing MS
was caused by psychological factors, and a lack of a coherent understanding of MS.
Nine cross-sectional studies have specifically investigated the role of illness
uncertainty in adjustment. The concept of illness uncertainty includes perceptions of
ambiguity, complexity, deficiencies in information and unpredictability regarding
symptoms, diagnosis, treatment, relationships and future plans (Mishel, 1988). All
demonstrated associations between high uncertainty and worse adjustment. The eight
studies that employed regression analysis found that uncertainty predicted aspects of
wellbeing such as depression, psychosocial adjustment, distress and mood. Those studies
that reported its unique contribution to explaining such outcomes found it accounted for
between 12.5% and 32% of the variance (McNulty, Livneh, & Wilson, 2004; Wineman et
al., 1994; Wineman, O'Brien, Nealon, & Kaskel, 1993; Wineman et al., 1996). Although
not all studies considered disease severity in their analyses, those that did found
uncertainty was an important predictor over and above illness severity.
Perceptions of helplessness regarding MS, or the extent to which an individual
feels overwhelmed by and unable to control the disease was investigated in four crosssectional studies. All found positive correlations between helplessness and depression. In
two studies helplessness was a very strong predictor, accounting for around 30% of the
variance even after controlling for demographic factors and disease severity (Shnek et al.,
1997; Shnek et al., 1995). However, one study found that despite a helplessness-
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A review of psychological correlates of adjustment in patients with multiple sclerosis
depression correlation, helplessness was not responsible for differences in depression
between two groups of MS patients (Kneebone et al., 2003).
Another line of enquiry has looked at patients cognitive interpretations of
symptoms. One study looked at symptom attribution (Taillefer, Kirmayer, Robbins, &
Lasry, 2002). Contrary to expectations, the extent to which participants endorsed
somatising, psychologising and normalising attributions for everyday symptoms was
unrelated to adjustment. However this study had a small sample size (N=40). Another
larger study took a broader approach and examined a range of ways of interpreting and
responding to symptoms (Skerrett & Moss-Morris, 2006). A number of unhelpful
cognitive and behavioural responses were associated with worse social adjustment,
explaining 26% of variance after taking into account disease severity factors.
Embarrassment (e.g. “the embarrassing nature of my symptoms prevents me from doing
things”) and avoidance/resting (e.g. “when I experience symptoms I rest”) were
particularly strong predictors. Another study investigated pain cognitions (Osborne et al.,
2007). Catastrophic pain beliefs, beliefs that emotions influence pain and beliefs that
other people should respond solicitously to pain were associated with worse adjustment
after controlling for demographic factors, disease and pain severity.
In a slightly different line of enquiry, one study investigated beliefs associated
with hypochondriasis including the conviction that one is ill, feeling more sensitive to
pain, vulnerable to illness, and feeling that one’s illness is insufficiently validated by
others (Taillefer et al., 2002). Such beliefs were correlated with depression but did not
predict mental and subjective physical functioning.
Overall, research investigating perceptions of illness and symptoms is in its
infancy. Although there is fairly consistent evidence that illness uncertainty is linked to
worse adjustment, other factors have only been investigated by one or two studies and
existing evidence is somewhat mixed. However, a handful of well-designed studies using
comprehensive measures have found that illness and symptom-specific cognitions can
explain a significant amount of the variance in a range of adjustment outcomes.
5. Perceptions of Control and Self-efficacy
Theories and existing research relating to control-related concepts predict that
perceptions of a high degree of personal control over the achievement of desired
outcomes are generally adaptive (e.g. Bandura, 1977; Rotter, 1966) whereas beliefs in the
uncontrollability of situations tend to be maladaptive (e.g. Seligman, 1975). A number of
reviewed studies examined control-related concepts in relation to adjustment outcomes
(Table 1).
Perceived control reflects an individual’s beliefs about the degree of control
achievable by themselves or others in different situations. A related concept, locus of
control, refers to beliefs about responsibilities for outcomes (Rotter, 1966). Five crosssectional studies investigated these control beliefs and yielded mixed results. The two
studies that looked at generic control perceptions (i.e. in a range of life domains) found
relationships between high internal, or personal control and lower depression and distress,
more positive mood and more life happiness (Devins, Seland, Klein, Edworthy, & Saary,
1993; Halligan & Reznikoff, 1985). Interestingly, the studies that examined health-
13
A review of psychological correlates of adjustment in patients with multiple sclerosis
specific locus of control (Hickey & Greene, 1989; Marks et al., 1990) and recovery locus
of control (MacLeod & MacLeod, 1998) found no relationships with adjustment
outcomes. Conceivably these small studies may have been underpowered to detect what
could be rather modest relationships. On the other hand, specific control perceptions
regarding health or recovery may be irrelevant in the context of an incurable and
unpredictable illness like MS.
Self-efficacy is the individual’s appraisal of the extent to which they have the
capabilities required to manage prospective situations (Bandura, 1977). Ten studies
investigated the role of self-efficacy in adjustment. Three cross-sectional studies
(Fournier et al., 2002; MacLeod et al., 1998; Stuifbergen, 1995) and one longitudinal
study (de Ridder, Fournier, & Bensing, 2004) examined self-efficacy for generic life
difficulties. These studies all employed different designs and found mixed evidence.
Self-efficacy was associated with some adjustment outcomes but not others and no
consistent patterns emerged across studies. In contrast, the seven studies which examined
health-specific aspects of self-efficacy found some evidence that it was linked to better
adjustment. In prospective analyses, self-efficacy for functional ability and managing MS
symptoms (Riazi, Thompson, & Hobart, 2004) and self-efficacy for controlling mood and
maintaining social life (Barnwell & Kavanagh, 1997) predicted better adjustment at
follow-up. Two cross-sectional studies also found associations between higher selfefficacy for managing MS and lower depression (Shnek et al., 1997; Shnek et al., 1995).
Two studies found links between self-efficacy for health promoting behaviours and better
QoL (Stuifbergen, 1995; Stuifbergen, Seraphine, & Roberts, 2000). One small study
found that self-efficacy for psychosocial adjustment predicted better adjustment crosssectionally. Patients’ outcome expectancies (beliefs that illness management behaviours
would produce a favorable outcome) did not add to the predictive power of self-efficacy
alone (Wassem, 1992). Interestingly, self-efficacy for disease management predicted a
small amount of variance in adjustment in the opposite direction; this type of self-efficacy
was related to worse adjustment. Since research tends to find that self-efficacy is
beneficial for adjustment to chronic illness (e.g. Edwards, Telfair, Cecil & Lenoci, 2001)
it may be that this counter-intuitive finding is a chance finding in a small study.
Alternative, perhaps certain self-efficacy beliefs that relate to controlling the disease may
unhelpful in the context of MS, a disease where certainty and predictability may be
elusive?
Overall, people who have a high sense of personal control over their lives seem to
adjust better to MS but beliefs about control over health appear to be less important.
Regarding self-efficacy, more disease-specific constructs seem to have a stronger
relationship with adjustment outcomes than generalized self-efficacy. Finally, in all the
control research, only a handful of very heterogeneous studies have been conducted on
each variable and large, longitudinal, methodologically robust studies are lacking.
6. Positive Psychology
In contrast to research that has examined dysfunctional cognitions and responses
to illness, some studies have approached adjustment from a positive psychology
perspective and investigated a range of factors thought to enhance happiness and wellbeing (Table 1).
14
A review of psychological correlates of adjustment in patients with multiple sclerosis
An optimistic view of the future is expected to be related to better adjustment
outcomes since optimists tend to continue with adaptive coping efforts when confronted
with adversity (Carver et al., 1993). Five studies investigated aspects of optimism. Four
cross-sectional studies found links between dispositional optimism, or a tendency to hold
positive expectations of the future, and better adjustment. Optimism was associated with
lower depression (de Ridder et al., 2000; Fournier et al., 2002; Fournier et al., 1999;
Gold-Spink, Sher, & Theodos, 2000), less anxiety (Fournier et al., 2002), less negative
affect and more positive affect (Fournier et al., 1999) and better physical, social and
psychological adjustment (de Ridder et al., 2000). Pessimism was related to worse
adjustment (de Ridder et al., 2000). Results regarding unrealistic optimism, an
inclination towards wishful thinking and underestimation of risks of negative events, are
more mixed. In one study unrealistic optimism was related to less depression (Fournier et
al., 1999) and in another it was unrelated to mental health outcomes (Fournier et al.,
2002). In the only longitudinal study, dispositional optimism (but not unrealistic
optimism) was correlated with less negative affect at baseline. However, neither type of
optimism demonstrated a strong role in predicting adjustment at six month follow-up (de
Ridder et al., 2004). However, the study is limited by its small sample consisting of
participants with low levels of disease severity and short illness duration.
According to hope theorists (e.g. Synder, Rand, & Sigmon, 2002) a sense of hope,
or the belief that we can find pathways to desired goals and become motivated to use
those pathways, drives positive emotions and well-being. Conversely, hopelessness is
related to negative adjustment outcomes. Three cross-sectional studies investigated hopeadjustment relationships. All found correlations between low hope and increased
depression (Hickey et al., 1989; Lynch et al., 2001; Patten & Metz, 2002). Only one study
performed regression analysis. Hope predicted lower depression in a model that included
uncertainty, coping, disability and demographic factors. However the variance it
explained was not reported (Lynch et al., 2001).
Benefit finding is a specific type of adaptive coping strategy whereby despite
adversity, people positively evaluate their circumstances and report gains such as
personal growth, improved relationships and changes in priorities and personal goals
(Pakenham, 2005). Three reviewed studies investigated benefit finding and found it was
positively correlated with positive adjustment and to a lesser extent inversely correlated
with negative adjustment domains. The one study that reported regression analyses
showed that benefit finding explained significant variance (3-11%) in positive affect,
dyadic adjustment and life satisfaction after demographic, clinical and stress variables
were considered (Pakenham, 2005). However, it did not predict subjective health status,
distress and negative affect. Across studies, family relations growth (e.g. ‘MS has helped
me be closer to my family’) was more strongly and consistently associated with
adjustment than a sense of personal growth (e.g. ‘MS has made me appreciate life more’).
Acceptance of illness, and an integration of changes into a person’s sense of self
and way of life (Stuifbergen et al., 2000), is widely thought to be beneficial for
adjustment. However, only two reviewed studies investigated acceptance. Both examined
its impact on marital relationships. In one, lower acceptance was associated with worse
impact (Harrison, Stuifbergen, Adachi, & Becker, 2004). In the other, it was unrelated to
relationship satisfaction (Dupont, 1996).
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Various researchers have suggested that spirituality is related to better adjustment
to illness, possibly by providing a sense of coherence and meaning so that people
understand their role in the universe, the purpose of life, and develop the courage to
endure suffering (e.g. George, Larson, Koenig, & McCullough, 2000). Two reviewed
studies investigated spirituality. In one, spirituality was unrelated to distress (Beatty et al.,
1998). In the other, spirituality was measured by two sub-scales: religious well-being and
existential wellbeing. Both subscales were associated with better psychosocial adjustment
(McNulty et al., 2004), explaining up to 18% of overall psychosocial adjustment and up
to 34% of distress after accounting for demographic and illness factors. Existential wellbeing was the stronger predictor of better adjustment although findings may be inflated
since this subscale seemed to also tap aspects of adjustment outcomes.
Overall, studies tentatively suggest that various constructs associated with
positive psychology are related to better adjustment outcomes. Dispositional optimism is
fairly consistently related to better mental health and well-being. Hope appears to be
related to less depression. Benefit finding is also important, and appears to be more
related to achieving positive adjustment (e.g. life satisfaction) rather than a lower
likelihood of negative outcomes such as distress. Evidence regarding spirituality and
acceptance is currently too limited to draw conclusions. Unfortunately, many studies fail
to consider objective measures of disease severity. This precludes conclusions that the
link between factors such as optimism, hope and benefit finding and positive
psychosocial adjustment are more than merely a reflection of less severe illness.
7. Health Behaviours
Four studies explored relationships between adjustment and health behaviours; the
frequency that a person reports engaging in activities to promote his or her physical and
mental health. These behaviours include physical exercise, healthy eating, and stressmanagement techniques. All studies discerned links between more health behaviours and
better adjustment in terms of marital relationships (Harrison et al., 2004) and QoL
(Stuifbergen, 1995; Stuifbergen, Blozis, Harrison, & Becker, 2006; Stuifbergen et al.,
2000). One of these studies was longitudinal and found that continuation of exercise
behaviour over time predicted continuation of enhanced QoL. Furthermore, two studies
found that high levels of perceived barriers to health behaviours were associated with
worse QoL (Stuifbergen, 1995; Stuifbergen et al., 2000). Further research linking health
behaviours to a wider range of outcomes would be valuable.
8. Miscellaneous Factors
A selection of studies found links between poor adjustment and magical ideation
(te Wildt & Schultz-Venrath, 2004), denial defence mechanisms (Noy et al., 1995) ,
neuroticism (van der Werf, Evers, Jongen, & Bleijenberg, 2003), and a range of
personality traits (Zeldow & Pavlou, 1988). However, each of these studies was small,
cross-sectional and methodologically weak. Without further study insufficient data is
available to draw conclusions about the importance of these factors.
Discussion
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Main findings
Of the factors reviewed, the strongest available evidence was for perceived stress
and certain avoidant emotion-focussed coping strategies. In line with the adjustment
literature for other chronic illnesses (e.g. Curtis, Groarke, Coughlan & Gsel, 2005;
Stanton, Revenson & Tennen, 2007) , these factors were fairly consistently associated
with worse adjustment outcomes and there was some evidence that they were important
in predicting them. Some degree of evidence was also found for relationships between
adjustment outcomes and factors concerning social support and interactions with others,
psychopathology models, illness cognitions, control perceptions, positive psychology,
and health behaviours.
Clinical Implications of key findings
They key findings from this review, and a discussion of ways in which the
investigated factors might be addressed in psychotherapy with people with MS are
outlined below. Although CBT lends itself well to addressing many of these factors, a
range of other therapeutic approaches could also intervene with these factors.
Stress and coping.
This review found strong evidence for links between perceived stress and worse
adjustment. A link was also found between appraisal of MS as threatening, (rather than
controllable or a challenge) and worse adjustment. Emotion-focused coping strategies
(denial, avoidance, wishful thinking) were linked to worse adjustment. Problem-focused
strategies (doing something to change the source of the stress), positive reframing, and
seeking social support on the other hand seemed to be linked to better adjustment.
Patients’ perceptions of stress could be tackled by a number of CBT techniques.
Interventions could aim to modify threat appraisals of MS or other life stressors by
assisting patients to identify possible unhelpful or negative automatic thoughts and
generate possible alternative thoughts. Stress-management methods such as progressive
muscle relaxation or guided imagery may be appropriate for some patients. Exploring
ways of managing the impact of daily stressors on the patient’s life may also be
appropriate, for example learning assertiveness skills, planning and prioritizing, and
recognizing the need for regularly engaging in pleasurable pursuits. Interventions could
also explore the types of coping strategies used by the patient and guide individuals in
moving away from over-use of maladaptive emotion-focused strategies and encouraging
the more adaptive approaches.
Social support and interactions with others.
This review found consistent evidence of a relationship between high levels of
perceived social support and better adjustment. Positive evaluations of family and spouse
interactions were also linked to better adjustment.
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Improved perceived social support may be achieved through helping the patient to
consider people available in their social networks for different types of support and
examining ways of eliciting support. It may also be helpful to explore patients’
expectations of others and beliefs about how their illness affects their social relationships.
Inclusion of significant others in interventions and examining relationship and
communication issues may be important.
Cognitive models of psychopathology.
Although there have only been a handful of relevant studies to date, our review
demonstrated initial findings of links between cognitive errors, stable and global
attributional style, negative affective memory biases and higher levels of depression in
people with MS.
Teaching patients to detect unhelpful cognitions through cognitive techniques
such as thought diaries and generation of alternative thoughts may be helpful here. In
some cases, exploration of core beliefs and life experiences that have lead to unhelpful
assumptions may be important. Behavioral experiments to test out unhelpful thoughts that
appear to be linked to a patient’s adjustment may also be useful.
Illness and symptom cognitions.
Although there have not been a large number of studies in this area, a few studies
found strong relationships between patients’ thoughts about their illness and symptoms
and their adjustment. Lacking a coherent understanding of MS, tending to attribute a wide
range of symptoms to MS, seeing MS as having a cyclical timeline, and believing that
MS was caused by psychological factors have been linked to worse adjustment. Feeling
high levels of uncertainty about MS and helplessness in relation to MS were also both
related to worse adjustment. Certain ways of thinking about and responding to symptoms
were linked to poorer adjustment, particularly, being embarrassed about symptoms and
using avoidance and resting in response to symptoms. Certain beliefs about pain and
hypochondriasis-related beliefs were also correlated with worse adjustment outcomes.
Investigating a patient's beliefs about their illness; its cause, consequences,
emotional impact, timeline and treatment prospects may reveal that patients have
inaccurate beliefs about their MS. An educational aspect of therapy may be helpful here,
as may setting monitoring tasks for patients to become more familiar with the illness and
uncover some predictability and/or controllability in their symptoms. Again, techniques
to explore and challenge beliefs that are unhelpful may be appropriate. Exploring how
patients react to their symptoms may also be an important therapeutic endeavor.
Investigating inaccurate or unhelpful beliefs about symptoms, and beliefs underlying
maladaptive behavioral responses (e.g. avoidance) combined with behavioral
experiments, monitoring, or goal setting could help patients learn more about the
relationship between their thoughts, behaviours, symptoms, and emotional responses, and
then develop and practice more adaptive ways of responding. Alternatively, ‘Third wave
behaviour therapies', particularly Acceptance and Commitment Therapy (ACT; Hayes,
Follette & Lineham, 2004), may be more appropriate since challenging beliefs about
illness and symptoms may be of limited usefulness when the beliefs are indeed accurate.
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A review of psychological correlates of adjustment in patients with multiple sclerosis
Instead, ACT works on coming to terms with difficult thoughts and feelings, and
developing acceptance.
Perceptions of control and self-efficacy.
The review found a somewhat unclear role for control perceptions in adjustment.
Feeling in control of outcomes in various life domains may be related to good adjustment
but perceptions of control over health does not appear to influence adjustment. On the
other hand, self-efficacy showed the opposite pattern; there was no clear-cut evidence
that feeling capable of managing generic life events was related to adjustment but selfefficacy for health and illness management was consistently related to better adjustment.
Instilling a realistic sense of control, and self-efficacy in the context of MS may
be an aim of therapy in some cases. A patient with feelings of low control over their
illness could be led to consider if there are aspects of the illness that are controllable or
manageable and then plan and set goals around strategies that could be used to deal with
these. Where relevant, self-efficacy for illness management could be improved in the
clinical setting through the techniques identified by Bandura (1977): performance
mastery, vicarious experience, verbal persuasion, and emotional arousal. However,
significant work on eliciting adaptive strategies for dealing with aspects of illness (and
life) that are beyond personal control may also be necessary. Again, ACT seems a
particularly useful approach here.
Positive psychology.
A few studies suggested that optimism was correlated with better adjustment,
whereas pessimism was associated with worse adjustment. Similarly, hope was related to
better adjustment, whereas hopelessness was related to negative adjustment outcomes.
Being able to find benefits of experiencing MS, particularly in terms of positive effects
on family life, was related to positive adjustment outcomes.
Patients will differ in terms of whether they are disposed towards optimism or
pessimism. However, reducing levels of pessimism and developing a more positive or
balanced outlook and realistic level of hope might be achieved by giving balanced and
realistic information and checking the accuracy of the patient’s understanding of their
illness and likely prognosis. Examining illness representations and beliefs about control
and self-efficacy may also be important here. Encouraging benefit-finding by searching
for meaning and positivity in difficult situations could sometimes be appropriate.
Health behaviours
Consistent links between high levels of engagement in behaviours to promote
physical and mental health and better adjustment were identified. Within a therapeutic
context, engagement in health behaviours could be encouraged. Graded behavioral goals
could be set, and barriers addressed surrounding appropriate physical activity, rest and
relaxation, compliance with medication, diet, smoking, alcohol use and sleep.
Delivery of psychological interventions in the context of MS
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A review of psychological correlates of adjustment in patients with multiple sclerosis
An important consideration is the format in which interventions for people with
MS could be delivered. An individual assessment would be necessary for individual
patients due to the variability of symptoms and disability in MS. However, attention may
need to be paid to illness-related factors such as fatigue and difficulty attending sessions
due to mobility problems. Cognitive impairment might also need to be assessed as people
with MS may experience difficulties with concentration and memory which may interfere
with engagement in complex interventions. The format of intervention materials also
requires consideration since patients may have visual impairment and/or difficulties with
fine motor movement. A high degree of flexibility and innovation in terms of the
scheduling, format, and delivery of sessions may be required in order to respond to the
difficulties of living with an illness that can be both unpredictable and disabling. For
instance, there is evidence that telephone therapy sessions are effective methods for
delivering interventions in the context of MS (e.g. van Kessel et al., 2008).
Methodological Critique of Reviewed Studies
Overall, despite the large number of studies available to review, the quality and
strength of the research base was disappointing. In some cases the study design and
methodological quality prevented questions about the role of psychological factors in
adjustment being confidently answered.
A fundamental limitation of the reviewed research is that most studies (58 out of
72) were cross-sectional; without longitudinal evidence, causal relationships between
psychological factors and outcomes cannot be established. Nevertheless, understanding
psychological factors associated with adjustment provides insight into issues that could
be tackled through psychological interventions in order to bring about better adjustment.
Even if relationships are reciprocal, change in one may well affect change in the other. A
similar issue is that many studies only reported bivariate correlations between
psychological factors and adjustment. Potentially any role for psychological variables
could become insignificant if disease severity was accounted for, although it is interesting
to note that in many studies that did control for objective disability psychological factors
were still demonstrated to be important.
Another problem is that many studies used small samples. Small samples could
render studies underpowered to detect relationships, or mean that positive findings may
not generalise to larger or different populations. The representativeness of study samples
also merits consideration. Of studies that reported disease severity, most included
participants with mild or moderate MS. Many studies excluded patients with severe
cognitive impairment, co-morbid physical or psychiatric illnesses, and those experiencing
exacerbations. This sample composition may bias studies towards including those less
severely affected by MS and perhaps better adjusted.
Inadequate reporting of participant characteristics makes it difficult to interpret
study findings or make judgements about generalizability. Some do not report key
demographic data. More importantly, many studies failed to report important medical
characteristics about participants including MS type, disease severity, time since
diagnosis, and the proportion of patients currently experiencing a relapse. Of studies
reporting these key illness characteristics, few stated that this data was verified via a
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A review of psychological correlates of adjustment in patients with multiple sclerosis
physician; many used patient-reported data. Patients’ perceptions may not match medical
opinion.
Other weaknesses concern measurement. The studies relied overwhelmingly on
participant self-report measures for both psychological factors and outcomes. This may
mean that results are influenced by shared-method variance. Furthermore, studies tended
to adapt standard, validated instruments (e.g. removing items in depression measures that
may overlap with MS symptoms). Although these changes render measures appropriate
for MS patients it also makes comparing results across studies difficult.
Reporting of statistics was also sometimes inadequate, and the failure to report
results in conventional formats (e.g. a regression analysis table including beta coefficients
and R2 values) sometimes prevented the interpretation of results about the relative
importance of psychological factors.
Suggestions for Future Research
All of the psychological factors studied would benefit from more
exploration through further, well-designed studies addressing the methodological
problems and gaps in the literature identified by this review. Specifically, longitudinal
studies to establish whether the psychological factor precedes and predicts the outcome
are needed to better tease apart cause and effect. Ideally, studies of the adjustment
process need to employ prospective designs and assess large samples of participants
before and after the development of MS and follow up the sample many years later.
Unfortunately, in practice, this is extremely difficult and costly. However, studies which
begin investigating when patients initially present with symptoms, prior to diagnosis
could be more feasible. Studies that investigate multiple psychological factors would
also be useful in order to ascertain the most powerful psychological predictors. Studies
that investigate interactions between psychological factors (and interactions with illness,
demographic and other relevant variables) would also be valuable in order to establish
mediator and moderator roles as well as direct influences.
On a different note, an interesting step for research would be the investigation of
whether the psychological factors highlighted in this review are related to disease
exacerbation and progression, and mechanisms through which they might operate. A
body of research has already linked stressful life events to disease exacerbations (Mohr ,
Hart, Julian, Cox, & Pelletier, 2004) and research in other chronic illnesses has shown
that psychological adjustment can influence disease progression (e.g. Leserman, 2008;
Spiegel & Giese-Davis, 2003). Teasing apart the complex relationships between
psychological factors, adjustment outcomes, and MS disease outcomes will be an
important future endeavour.
Models of Adjustment
With the exception of a number of studies guided by the stress and coping
framework (Lazarus et al., 1984) few of the reviewed studies were based around
theoretical models or frameworks of adjustment; many papers were atheoretical. Further
research incorporating theoretical models of adjustment is warranted. In particular, the
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A review of psychological correlates of adjustment in patients with multiple sclerosis
development and testing of models that bring together a range of constructs that have
been demonstrated as important in this review would be valuable.
We are currently developing a cognitive behavioural intervention for helping
people adjust to living with MS. Our approach is based largely on Beck’s cognitive
model of emotional disorders (Beck 1974), but also draws on Acceptance and
Commitment Therapy (Hayes et al., 2004). In developing the intervention we brought
together factors identified in this review into a provisional working model of adjustment
to MS (see Figure 1). The upper portion of the model is not unique; in line with existing
cognitive behavioural models (e.g. Beck 1974) an individual’s personality and early
experiences feed key beliefs about self and others. These beliefs influence goals, values,
and behaviours. Many readers will be familiar with the conceptualisation of chronic
illness as a critical event (or indeed a series of critical events) whereby change/s such as
developing symptoms, getting a diagnosis, having a relapse or experiencing disease
progression will often challenge existing values, goals and behaviours, disrupting the
individual’s emotional equilibrium and posing difficulties for maintaining well-being and
quality of life. At times like this emotional distress and personal disruption are to be
expected. However, if they are prolonged this leads to difficulties in adjustment. The
bottom sections of Figure 1 summarises the cognitive, behavioural and social factors
which this review has established are linked to either successful adjustment or difficulties
with adjustment. Importantly, it draws clinician’s attention to the more illness-specific
cognitions and behaviours that may influence adjustment outcomes in MS. Factors such
as unhelpful illness representations and responses to symptoms and uncertainty about MS
may differ from the typical cognitions and behaviours identified and addressed in CBT
with patients with clinical depression or anxiety (e.g. the cognitive triad, threat
cognitions).
Limitations of the Review
A number of limitations to this review should be considered. Firstly, due to the
large number of studies available in the domain of interest, only studies published in
peer-reviewed journals were considered. It was beyond the scope of the review to locate
unpublished research and search the ‘grey literature’. Regrettably, this decision
introduces a potential for bias in the results since unpublished data is more likely to
demonstrate no relationships.
Secondly, again because of the large number of studies in the area, the review
included only quantitative research; qualitative studies were excluded. Although
qualitative research cannot address specific questions about the extent to which one
variable influences another or definitively establish relationships, they could shed light on
phenomena and proffer explanations for mixed and confusing findings.
Finally, the choice of research questions to address in this review meant that a
large number and broad range of studies were included. This approach was useful since
although there have been general reviews of psychosocial aspects of MS (e.g. Mohr et al.,
2001) there has been no systematic review of the many psychological factors that relate
to adjustment outcomes. However, our chosen approach also had its drawbacks. Because
the inclusion criteria were broad the studies were vastly heterogeneous, and so not
conducive to an overall synthesis. Furthermore, the liberal inclusion criteria meant that
22
A review of psychological correlates of adjustment in patients with multiple sclerosis
Personality/Early
experiences
Key beliefs about self and
others
Values
Behaviors
Goals
CRITICAL EVENT/S
e.g.
Developing MS symptoms
Diagnosis
Relapse
Disease Progression
Disrupts emotional equilibrium
and current quality of life
SUCCESSFUL ADJUSTMENT
(less distress and interference/impact of MS on life)
ADJUSTMENT DIFFICULTIES
(disproportionate distress and impact of MS on life)
Factors helpful for adjustment:
Factors unhelpful for adjustment:
Cognitive Factors

Coping by using positive re-appraisal

Perceived control over generic life situations

Self-efficacy regarding MS management

Optimism

Hope

Benefit finding

Self-efficacy regarding generic life situations

Acceptance of illness

Spirituality
Cognitive Factors

High perceived stress

Coping through wishful thinking or avoidance

Uncertainty about illness

Appraisal of MS as threatening

Dysfunctional cognitions/cognitive errors & biases

Helplessness

Perceived barriers to health behaviours

Unhelpful illness/symptom representations

Unhelpful beliefs about pain
Behavioral Factors

Coping by using problem-focussed strategies or
seeking social support

Health behaviors
Behavioral Factors

Coping through avoidance

Unhelpful responses to symptoms
(avoidance/resting)
Social/environmental Factors

High perceived social support

Positive relationships/interactions with family/spouse
Bold text= Strong evidence. Many studies conducted and literature consistently supports the role of this factor
Normal text= Modest evidence. Less research conducted, or some conflicting evidence from studies about the
importance of the factor
Figure 1: A working model of adjustment to multiple sclerosis
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A review of psychological correlates of adjustment in patients with multiple sclerosis
some studies were methodologically weak and inadequate to provide robust evidence of
associations, particularly causal relationships. Hopefully this review will draw attention
to the paucity of good quality evidence, improve the quality of future research, and
highlight areas in which future studies could be usefully directed.
Reference List
References preceded by an asterisk are research reports included in the review
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theory based sub-type of depression. Psychological Review, 96, 358-372.
*Aikens, J. E., Fischer, J. S., Namey, M., & Rudick, R. A. (1997). A replicated
prospective investigation of life stress, coping, and depressive symptoms in
multiple sclerosis. Journal of Behavioral Medicine, 20, 433-445.
Antonak, R. F. & Livneh, H. (1995). Psychosocial adaptation to disability and its
investigation among persons with multiple sclerosis. Social Science and Medicine,
40, 1099-1108.
*Arnett, P. A., Higginson, C. I., Voss, W. D., Randolph, J. J., & Grandey, A. A. (2002).
Relationship between coping, cognitive dysfunction and depression in multiple
sclerosis. The Clinical Neuropsychologist, 16, 341-355.
*Arnett, P. A. & Randolph, J. J. (2006). Longitudinal course of depression symptoms in
multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry, 77, 606610.
Bandura, A. (1977). Self-efficacy: towards a unifying theory of behavioural change.
Psychological Review, 84, 191-215.
*Barnwell, A. M. & Kavanagh, D. J. (1997). Prediction of psychological adjustment to
multiple sclerosis. Social Science & Medicine., 45, 411-418.
*Beatty, W. W., Hames, K. A., Blanco, C. R., Williamson, S. J., Wilbanks, S. L., &
Olson, K. A. (1998). Correlates of coping style in patients with multiple sclerosis.
Multiple Sclerosis, 4, 440-443.
Beck, A. T. (1976). Cognitive therapy and the emotional disorders. New York: Penguin
Books.
Benito-Leon, J., Morales, M. J., Rivera-Navarro, J., & Mitchell, A. (2003). A review
about the impact of multiple sclerosis on health-related quality of life. Disability
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Acknowledgements
This work was supported by a grant from the UK Multiple Sclerosis Society. Thank you
to Sarah Kirby, Emily Arden-Close and Angeliki Bogosian for their helpful comments on
earlier versions of this manuscript.
Footnotes
1
Available from the corresponding Author on request
2
Available from the corresponding Author on request