Knowledge, Ignorance and Priorities For Research in Key Areas of Cancer Survivorship: Findings From A Scoping Review

Full Paper
Knowledge, ignorance and priorities for research in key areas

of cancer survivorship: findings from a scoping review
A Richardson
*
,1
, J Addington-Hall
1
, Z Amir
2
, C Foster
1
, D Stark
3
, J Armes
4
, SG Brearley
5
, L Hodges
6
, J Hook
3
,
N Jarrett
1
, Z Stamataki
7
, I Scott
1
, J Walker
6
, L Ziegler
8
and M Sharpe
9
1
Faculty of Health Sciences, University of Southampton, Building 67, Highf ield, Southampton SO17 1BJ, UK;
2
School of Nursing, Midwifery and Social
Work, University of Manchester, Jean McFarlane Building, Oxford Street, Manchester M13 9PL, UK;
3
St James Institute of Oncology, Beckett Street, Leeds
LS9 7TF, UK;
4
Florence Nightingale School of Nursing & Midwifery, Kings College London, James Clerk Maxwell Building, 57 Waterloo Road, London SE1
8WA, UK;
5
International Observatory on End of Life Care, Division of Health Research, School of Health and Medicine, University of Lancaster, Lancaster
LA1 4YT, UK;
6
Psychological Medicine Research, School of Molecular and Clinical Medicine, University of Edinburgh, Edinburgh EH10 5HF, UK;
7
The
Christie NHS Foundation Trust, Wilmslow Road, Manchester M20 4BX, UK;
8
Leeds Institute of Molecular Medicine, University of Leeds, St James
University Hospital, Leeds LS9 7TF, UK;
9
Psychological Medicine Research, Department of Psychiatry, University of Oxford, Warneford Hospital, Oxford
OX3 7JX, UK
BACKGROUND: Patients who have completed initial cancer treatment (cancer survivors) have been relatively neglected. We need data
to help us better understand the needs of this group and to underpin evidence-based service development.
METHODS: Scoping reviews of research published in the last two decades focussing on the problems faced by cancer survivors, and the
effectiveness of interventions for these problems were undertaken. The aim was to identify what we know, what we do not know
and opportunities where research could provide new information. We searched for, retrieved and rapidly appraised systematic
reviews sourced from the most common electronic databases supplemented by more recently published individual studies.
RESULTS: The research evidence is surprisingly limited. We have some knowledge of the prevalence and nature of depression, pain and
fatigue in cancer survivors. We know much less about cognitive and physical impairment, employment, financial well-being and
relationships. Even where we have evidence, it is mostly of only moderate quality, is most often only for breast cancer and focuses
almost exclusively on the early phase of survivorship. We have good evidence for the effectiveness of drug treatments for pain
and moderate evidence for fatigue and depression, but not for other symptoms. Interventions based on rehabilitative and
self-management approaches remain in the early stages of evaluation.
INTERPRETATION: There has been a substantial amount of research describing many of the problems experienced by the cancer
survivors. This is strongest in the area of symptoms in the period soon after treatment. However, the quality of the evidence is often
poor, and some topics have been little examined. We urgently need data on the natural evolution and scale of the problems of
cancer survivors obtained from well-designed, large-scale cohort studies and the robust testing of interventions in clinical trials. Given
the current financially constrained research funding environment, we suggest areas in which strategic investment might give findings
that have the potential to make a major impact on patient well-being in a 5-year time scale.
British Journal of Cancer (2011) 105, S82 S94; doi:10.1038/bjc.2011.425 www.bjcancer.com
& 2011 Cancer Research UK
Keywords: cancer survivors; scoping review; unmet needs; intervention; research priorities
As cancer incidence rises, cancer mortality falls and the population

ages, the number of people living with and beyond cancer will
continue to grow by more than 3% a year (Maddams et al, 2009).
Although this figure is a testament to advances in the early
detection and better treatment of some cancers, there has been
growing concern that the services required to meet the physical
and emotional needs of survivors have not been adequately
developed. A study from the US National Health Interview Study
(Hewitt et al, 2003) comparing nearly 5000 cancer survivors with
90 000 people without a history of cancer found that survivors were
more likely to report being in poor health and have psychological
or functional disability than those without a cancer diagnosis, and
the likelihood of poor health was much higher among those who
also had another comorbid condition in addition to their cancer.
(Elliot and Corner, 2011).
In the UK and internationally, there have been calls for more
detailed consideration to be given to the needs of cancer survivors
alongside a desire to discover the most effective ways of meeting
those needs (Hewitt et al, 2005; Cancer Journey Action Group
of the Canadian Partnership Against Cancer, 2008; Department of
Health, 2010). For example, in UK, the National Cancer Survivor-
ship Initiative (NCSI) has called for a fundamental shift in the way
cancer survivors are supported, moving from a formulaic medical
emphasis in follow-up to an approach based on individualised
needs and preferences and the promotion of recovery, health and
well-being.
Research can have a central role in supporting such shifts,
providing the evidence to build a picture of the range and extent of
*Correspondence: Professor A Richardson; E-mail: alison.richardson@
soton.ac.uk
British Journal of Cancer (2011) 105, S82 S94
& 2011 Cancer Research UK All rights reserved 0007 0920/11
www.bjcancer.com
problems that cancer survivors face and testing approaches
designed to prevent and alleviate those problems. The research
reported here was commissioned to support the research work
stream of the NCSI.
We aimed in this review to summarise what is known from
existing research about the problems faced by cancer survivors
and the effectiveness of different solutions to these problems.
We also sought to identify areas in which research investment
might have an impact on the care of cancer survivors within the
next 5 years to inform the future research priorities of the NCSI.
The term cancer survivor has been widely interpreted; we have
taken this to mean someone who has completed initial cancer
treatment and has no evidence of active disease, or is living with
progressive disease but is not in the terminal phase of their illness
or has had cancer in the past (Macmillan Cancer Support, 2008).
We concentrated on the stages of the cancer journey covered by:
(1) the period immediately following treatment and (2) the short-
and long-term consequences of cancer. Owing to the breadth of the
topic area, we used scoping review methodologies. Through the
application of this method, we sought to identify what we know,
what we do not know and opportunities for research to improve
our knowledge of cancer survivorship.
MATERIALS AND METHODS
Scoping reviews aim to map rapidly the key concepts underpinning
a research area and the main sources and types of evidence
availabley [suitable for] yan area is complex or has not been
reviewed comprehensively before (Arksey and O Malley, 2005).
They are often used to gain a preliminary assessment of potentially
relevant literature and its size. Our methods broadly followed those
of Arksey and O Malley (2005). Two separate but linked reviews
focussed on (1) problems faced by cancer survivors and (2) the
effectiveness of interventions for these problems. In order to make
the task manageable in the time available, we searched for, retrieved
and rapidly appraised systematic reviews (rather than original
publications) sourced from the most common electronic databases
(including Medline, EMBASE, Psychlit, PsychINFO, Cochrane
Library, CINAHL, Web of Science and British Nursing Index) up
to the end of 2009. The reviews were supplemented with more
recently published individual studies. Detailed explanations of the
methods used can be found elsewhere (Foster et al, 2009; Richardson
et al, 2009; Ziegler et al, 2009; Brearley et al, 2011).
Review one
The first review focussed on the descriptions of the health and
well-being of cancer survivors including physical, psychological,
social and practical aspects.
Inclusion and exclusion criteria Reviews (including systematic,
comprehensive or other types of literature reviews of research
evidence of both qualitative and/or quantitative studies) were
included if they were written in English, published between 1
January 2000 and 31 December 2009 and focussed on health and
well-being in the acute, sub-acute, long-term and disease-
free phases of cancer survivorship. Reviews related to childhood
and adolescent cancer were excluded (as they were subject to a
different piece of work), as were drug trials and review articles
other than research literature reviews (e.g., retrospective data
review; overview; review of treatment outcome; review of an
individual patient case).
Review two
The second scoping review was targeted at scoping and collating
research evidence on the effectiveness of solutions to the problems
cancer survivors faced. Therefore, the focus of this review was on
retrieving systematic reviews and randomised controlled trials
(RCTs) of interventions for common problems including symp-
toms of depression, anxiety and fear of recurrence, emotional
distress, fatigue and pain and impairments to physical functioning,
social functioning (including relationships), work and employment
and cognitive functioning.
Inclusion and exclusion criteria Published reviews were included
if they were written in the English language, published between
1990 and the end of 2009, included an intervention that had
relief of one of the above as its primary aim and conducted
using systematic review methods. The searching extended to both
pharmacological- and non-pharmacological-type interventions
and professional-delivered and self-help-type interventions. We
excluded reviews devoted to childhood and adolescent cancer and
review articles other than those of randomised controlled trials.
Procedures
Abstracts and titles of review articles considered potentially
relevant were selected for further examination. The bibliographic
details, keywords, abstracts, website address (where available) of
identified articles were imported into bibliographic databases.
Relevant reviews were selected for synthesis with reference to
inclusion/exclusion criteria.
Data were extracted and summarised using data extraction
sheets suitable to the different types of reviews. Each review
identified for possible inclusion in the problems in the health and
well-being element of the scoping review was awarded a quality
score (out of 7) as a broad indication of quality. A review was
included if it achieved a score of X2. Assessment of the quality of
reviews in review 1 was informed by the checklists advocated by
the CASP-UK (2011) and Centre for Reviews and Dissemination
(2008). Almost all the reviews in the solutions scoping review were
high-quality Cochrane-type reviews, and quality screening was not
undertaken. Judgments about the study quality of the individual
studies included in the reviews were drawn from the commentary
available in the systematic reviews. This constitutes a broad
assessment of this feature of the research and relies on what we
could infer from comments made by the original review authors.
Consequently, we only provide a very broad and general indication
of whether the quality of the research evidence in relation to each
topic was low, medium or high. In terms of the quantity
of research contained in the reviews, this could not always be
precisely determined, as sometimes review authors (especially in
relation to the health and well-being review) did not state explicitly
the number of studies they reviewed, but referenced studies
throughout the text. Because there was scope for error in counting
these, we chose to use approximations and applied a banding
system (low, moderate and high amounts of research), and
therefore a precise number of studies are not offered (see Table 1
for a summary of criteria used).
To supplement the search for reviews, additional searches to
identify primary research papers published after the time frame of
the included reviews were performed. This was an extremely time-
limited exercise, and we adopted a simple and pragmatic method
of focussing on high-quality publications whereby we only
included those studies published in journals with an impact factor
of more 43 for studies of health and well-being and 45 for
studies of interventions.
RESULTS
We included 25 reviews and 61 primary research papers describing
problems of health and well-being in review 1, and 49 reviews and
21 primary research papers with respect to solutions in review 2.
Scoping review of survivorship research
A Richardson et al
S83
British Journal of Cancer (2011) 105(S1), S82 S94 & 2011 Cancer Research UK
Bringing reviews 1 and 2 together, the specific topics addressed
in detail were: fatigue and physical functioning, pain, sexual
functioning, cognitive functioning, general distress, depression,
anxiety, social needs and employment, finance and employment/
return to work. Tables 24 draw together findings in relation to
physical, psychological and social dimensions of survivorship
in terms of amount, scope and quality of research. Appendix
contains a full list of papers included in the scoping review in
relation to physical and practical well-being, psychological and
social problems, and the systematic reviews of interventions.
Review papers are listed in Appendix if they met the initial
criteria and were selected and appraised during the data extraction
process; however, some do not appear in the Tables 24 because of
their lack of contribution to the final conclusions and/or because
they did not relate to the specific areas we addressed in the
combined synthesis (for example, we did not address quality of life
in general). Each area is now addressed in turn.
Physical functioning and fatigue
The problem Impairment in physical function has been com-
monly researched in relation to fatigue. There is strong evidence
that cancer survivors experience fatigue soon after treatment, but
only modest evidence for increased fatigue in the longer term.
There is modest evidence that fatigue is associated with other
symptoms such as pain and sleep disturbance and that it impacts
quality of life. Most evidence relates to disease-free women with
breast and ovarian cancer and survivors of Hodgkins lymphoma.
Solutions There is a modest amount of research testing inter-
ventions for fatigue and physical functioning, mainly patient
education, and rehabilitative approaches such as exercise and
cognitive behavioural therapy (CBT). The best evidence is for
exercise. No clear overall recommendations for treatment can
be made.
Pain
The problem The evidence clearly shows that pain is a problem
for many cancer survivors and specifically that chronic pain is
more prevalent in breast cancer survivors than it is in the general
population. Radiotherapy and younger age are predictors. Some
cancer treatments may cause pain.
Solutions There is very good evidence that non-steroidal anti-
inflammatory drugs and opiates are effective for pain in the
general population. There is moderate evidence that these are
effective for pain in cancer survivors, but less evidence about how
to organise services to effectively deliver these treatments to those
who need them.
Sexual problems
The problem There is strong evidence that cancer and its
different forms of treatment can have consequences for a
survivors sexual function. This has been most studied in ovarian,
testicular, prostate, bladder and cervical cancer. There is also
evidence to suggest that symptoms that accompany treatment-
induced menopause are distressing.
Solutions There is limited evidence for the use of drug treatments
and mechanical devices to improve sexual function in patients
with gynaecological and urological cancers. Psychological and
behavioural treatments have been little researched and the findings
are inconclusive.
Cognitive functioning
The problem There is some evidence that cognitive dysfunction
occurs as a consequence of cancer treatment and affects quality of
life, but much of the evidence is limited to women with breast
cancer. We need more understanding of the incidence, course and
effect of alterations in cognitive function in cancer survivors.
Solutions We did not find any reviews of RCTs of interventions
specifically intended to address cognitive impairment.
Employment, return to work and finance
The problem This important problem has received little attention
from researchers. We have a reasonable understanding of the
issues and problems people confront as they try to return to work,
and there is good evidence that those who have survived cancer are
more likely to be unemployed than the general population. There
is also good evidence that those who have head and neck cancer
do a job that involves manual labour and perceive their work
environment to be unsupportive are less likely to return to work.
More understanding is needed of the effect of different types of
cancer treatment, different types of cancer and other factors on
return to work.
Solutions No evidence on the effectiveness of interventions was
located. The application of vocational rehabilitation in other fields
could be explored to identify potential approaches.
Emotional distress
The problem There is very good evidence that cancer survivors
suffer from increased distress during and soon after active
treatment, but less evidence for its occurrence in long-term
survivors. However, there is clearly a subgroup of long-term
survivors (for example, those with actual and fear of recurrence)
who have high levels of distress that merit help. Most at risk are
women, those with a lower socioeconomic status and those
with disabling and disfiguring cancers such as head and neck
cancers. Most of the evidence is limited to women with breast
cancer.
Solutions There is a large amount of poor-quality research
evaluating a range of psychological interventions such as
Table 1 Criteria used to determine amount and quality of research contained in reviews
Review 1 health and well-being Review 2 solutions
Amount Quality Amount Quality
Low 015 Studies Low Inferred from comments
made in individual reviews
Low p5 RCTs Low Inferred from comments made in
individual reviews Medium 1655 Studies Moderate Medium 610 RCTs Moderate
High 56+ Studies High High X11 RCTs High
Abbreviation: RCTrandomised controlled trial.
A Richardson et al
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S86
counselling and group therapy. The best evidence is for CBT.
There is evidence of temporary benefit only from complementary
and alternative medicines. Much of the research is flawed by
attempts to treat all patients rather than confining the intervention
to those with distress. No clear overall recommendations for
treatment can be made at present.
Depression
The problem There is good evidence for a significantly increased
rate of depression in cancer survivors during and soon after active
treatment. However, there is less evidence concerning long-term
survivors; persistent and recurrent depression is likely to be a
problem for an important minority. Those most at risk are people
who are younger, female and who have more advanced disease.
Much of the evidence is limited to women with breast cancer.
Solutions There is good evidence that antidepressant drugs, CBT
and complex treatment models such as collaborative care are
effective for depression in the general population. However, there
is only moderately good evidence that antidepressants, CBT and
collaborative care are effective in reducing depression specifically
in cancer survivors. We do not know how best to identify
depression in long-term survivors.
Anxiety
The problem There is some evidence for increased anxiety after
treatment; this is connected with anxiety about check-ups and
medical follow-up appointments. There is little evidence concern-
ing long-term survivors, but anxiety, especially about recurrence,
is a problem for a proportion. Those most at risk are younger, have
more physical symptoms, are closer to point of diagnosis and have
more advanced disease. Most of the evidence is limited to women,
particularly those with breast and ovarian cancer.
Solutions There is limited evidence about effective interventions
for anxiety. Cognitive behavioural therapy is likely to help, but has
not been adequately evaluated. Aromatherapy massage may bring
some short-term relief. Exercise may also have a role.
Social needs
The problem The social impact of cancer and the influence of
social support on outcomes such as emotional well-being and
quality of life have been studied mainly in breast cancer. There is
modest evidence that perceived social support is positively
associated with well-being and quality of life. The psychosocial
implications of cancer survivorship for family members have not
been well studied. Evidence to date suggests that distress in family
members persists over 5 years following diagnosis.
Solutions There is modest evidence that support groups have a
positive effect on marital satisfaction and sexual relationships, and
some evidence that interventions targeted at spouses might
improve marital relationships. No other clear recommendations
can be made about approaches that might prove effective with
respect to meeting social need.
Quality of the primary research
Although a scoping review does not offer a detailed critique of
the methods adopted or study quality, through the process of
conducting our review we were struck by a number of recurrent
methodological problems that were frequently highlighted by those
conducting systematic reviews. These shortcomings are as follows: T
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Research questions A key and all too common problem is the lack
of precision in the research questions that are asked (e.g., the effect
of a vaguely specified intervention on a wide range of vaguely
specified outcomes). Such studies, not surprisingly, produce only
vague answers.
Samples studied The origin of samples is sometimes poorly
described and they are often not representative of the population
studied. Most research has been carried out on women with breast
cancer; other cancers have been neglected. There is little research
into the needs of minority groups and certain cancers, such as lung
and the less common cancers. Most study samples are simply too
small to give robust results.
Measures A wide variety of measures have been used, with little
consistency between studies, making the combination of data
across studies problematic.
Study design A common criticism is that studies are methodolo-
gically weak and subject to multiple sources of bias, which may make
results unreliable. Another major problem of design is the lack of
long-term follow-up, both in studies of need and of interventions.
Interventions The interventions evaluated have often been poorly
characterised and may not be of a form that could realistically be
implemented in practice.
Interpretation
The research evidence is surprisingly limited. We have some
knowledge of the prevalence and nature of depression, pain and
fatigue in cancer survivors. We know much less about cognitive
and physical impairment, employment, financial well-being and
relationships. Even where we have evidence, it is mostly of only
moderate quality, is most often focussed on breast cancer and
almost exclusively on the early phase of survivorship. We have
good evidence of the effectiveness of treatments for pain, and
moderate evidence for fatigue and depression, but not for other
symptoms. Interventions based on rehabilitative and self-manage-
ment approaches remain in the early stages of evaluation. Our lack
of knowledge about how to address the problems of cancer
survivors is compounded by a lack of research into how to
implement interventions as part of routinely offered programmes
of care. We certainly need more research if we are to address the
problems of cancer survivors more effectively.
Table 5 Future best buys for research investment in key areas of cancer survivorship
Time frame
Issue Less than 2 years 25 Years 5 Years plus
Fatigue and
physical function
(1) Pilot studies of simple, feasible methods of
identifying fatigue in survivors; (2) studies of barriers to
implementing treatments such as guided self-help,
telephone delivered treatment based on CBT principles
and exercise
Large, multi-centre studies of fatigue
management with adequate follow-up
period that integrates screening and
treatment
Prospective cohort studies with age-matched
comparisons to study course of fatigue and
physical function in relation to factors such as
cancer site, treatment history and stage
Pain (1) Secondary analysis of existing data on prevalence of
pain and risk factors in survivors; (2) pilot studies of simple
and feasible methods of identifying pain in survivors;
(3) studies of the barriers to implementing pain
management models such as collaborative care
Large trials of interventions based on
feasible models of delivery that integrate
screening and treatment systems such as
collaborative care
Cohort study to identify risk factors for long-
term pain
Sexual function Surveys of prevalence and psychological and social
associations
Feasibility studies of integrated systems of
assessment and management
Large trials of interventions
Cognitive
function
Prevalence and risk factor studies of cognitive impairment
and its association with functional and psychosocial ability
Pilot studies of methods to identify and
intervene with those who are suffering
from cognitive impairment
Large trials of preventative and treatment
interventions
Employment,
finance and
return to work
(1) Theoretical and modelling work to establish the
transferability of vocational rehabilitation approaches used
in other contexts to cancer survivorship; (2) In-depth
studies to understand the financial effects of cancer;
(3) Studies to evaluate the best way to educate and
support employers to support cancer survivors whilst
returning to work
Well-designed pilot trials of feasible
methods of intervention
Large, prospective cohort studies to identify
factors that impact on return to work and
vulnerable subgroups and large-scale
intervention studies
Emotional
distress
(1) Secondary analysis of existing data on long-term
outcome; (2) Well-designed pilot trials of feasible methods
of intervention
patient education including guided self-
help and telephone delivered treatment
based on CBT principles
(1) Large, prospective cohort studies of mixed
cancer groups; (2) Studies to improve
understanding, identification and management
of distress in men and BME groups
Depression (1) Secondary analysis of existing data on prevalence and
risk factors in long-term survivors; (2) -pilot studies of
simple feasible methods of identifying depression in
survivors in hospital and primary care; (3) Studies of the
barriers to implementing established treatment models
such as collaborative care
feasible models of delivery that integrate
screening and treatment systems and have
an emphasis on primary care provision
such as collaborative care
Studies to improve understanding of how we
can identify and manage depression in men
and BME
Anxiety Secondary analysis of existing data to determine prevalence
of anxiety in the long-term and associations with fear of
recurrence
Well-designed pilot trials of feasible
methods that combine detection and
intervention suitable to address minor,
modest and severe anxiety and
interventions for fear of recurrence
(1) Large-scale, multi-centre trials of simple
feasible interventions; (2) Cohort study to
identify risk factors for persistent anxiety
Social needs (1) Exploratory studies to identify forms of social support
that might prove effective and factors that dictate whether
families do or do not seek support; (2) Secondary analysis
of existing data on long-term outcome and moderating
factors
(1) Pilot trials of feasible methods of
intervention to minimise or manage the
effect of cancer on relationships;
(2) Studies of the effect of a diagnose if
cancer on relationships
Cohort studies of mixed cancer groups that
include family members. More understanding
of how to identify and manage those who
perceive they have unmet need, especially in
those with cancers other than breast cancer
and in BME and other disadvantaged groups
Abbreviations: CBTcognitive behavioural therapy; BME black and minority ethnic groups.
A Richardson et al
S88
Limitations of the review
Our review of this large area of research is necessarily limited in
scope by the time and resources available to complete it. Primarily,
reviews of studies rather than original research reports were
examined. Where we did search for individual studies after the
publication date of the most recent reviews, we confined this
exercise to journals that had a particular impact factor. This may
have impacted our findings, particularly judgments about the
amount of research available in relation to an individual topic,
as some of the journals that publish studies in this field
(e.g., Supportive Cancer Care, Cancer Nursing and European
Journal of Cancer Care) had not achieved the impact factor
selected to merit inclusion. There was a focus on the more
common problems and widely used treatments for them to the
neglect of other topics. For example, we did not address the
organisation and delivery of care, information and support
(e.g., the process of care planning and methods of care delivery),
the impact on families and the lifestyle dimensions of survivorship.
Setting priorities for future research
Identifying research priorities is not as simple as it might first
appear. Critically, it is not as simple as identifying the gaps in the
evidence described above. The presence of gaps in evidence may
indicate an area difficult to research that would need many years of
investment to address. Furthermore, even in areas where we have
the information we need about a problem, including possible
solutions, research may still be needed to work out how to
implement these solutions in everyday practice.
It is also important to note that research takes more than
money; although money is essential, it also requires skilled
researchers with an interest in the question to deliver high-quality
answers. Such people remain in very short supply for many of the
questions posed here, despite this being recognised some years ago
(National Cancer Research Institute, 2004).
Scoping reviews, especially those designed to identify research
gaps, are often enhanced, and results can be made more useful if
policymakers, clinicians and service users contribute to the work
in the form of consultation (Arksey and O Malley, 2005). Our
study also included a consultation and prioritisation element
(details can be found in (Armes et al, 2009)). Contributors to this
exercise included researchers, commissioners and consumers of
survivorship research in the UK. The top five priorities to emerge
from a survey and consensus event included: studies to understand
the epidemiology of needs; methods to identify and manage
consequences of cancer and treatment; the organisation and
delivery of care; psychosocial issues; and informal carers and
families (Armes et al, 2009). The consultation served to inform
and, in some cases, validate the findings from the scoping review.
For example, the strong desire for research to determine optimum
ways to organise and deliver services emerged in this way.
The shrewd investor in research might therefore be well advised
to fund areas of research where not only are there gaps in
evidence about important topics but where there is also a
likelihood of the findings being implementation ready in a
reasonable time scale and for which there are existing groups with
a track record of delivering high-quality research. These represent
what we refer to as best buys for research investment and are
collated in Table 5. We use periods of less than 2 years (very short
term), 25 years (medium term) and greater than 5 years to
qualify these recommendations. These take into account the stage
the research has reached, and the relative complexity, scale and
length of time it might take to undertake it. We would suggest that
funders do not spend limited funds on yet more small-scale
research studies unless these comprise a development phase of
more significant, large-scale research. Rather, we need well-
funded, coordinated research efforts executed by skilled research
teams working in partnership with clinicians and cancer survivors.
Priorities should be (1) large-scale prospective cohort studies that
sufficiently describe needs of long-term survivors and to predict
those most at risk; (2) robust randomised trials of well-specified
delivery ready interventions; (3) research to determine the most
effective and efficient ways to organise care.
ACKNOWLEDGEMENTS
We thank the COMPASS and CECo administrators, Susie Edwards
and Anne-Marie McDonnell, for their support during the conduct of
the study and Liz Neilly and Linda Robertson, librarians at the
University of Leeds and University of Southampton, respectively. We
also thank those who contributed to the survey and consensus event
about research priorities and Jim Elliott and John Neate, Joint Leads
of the National Cancer Survivorship Initiative research work stream,
for their guidance. The research upon which this paper is based was
funded by Macmillan Cancer Support on behalf of the Department of
Health and the National Cancer Survivorship Initiative. The views
expressed here are those of the authors and not necessarily those of
Macmillan Cancer Support or the Department of Health.
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