Ways of effecting, maintaining and
evaluating behavioural changes leading to a reduction in smoking at all
ages, particularly children
Smoking is the major causative factor for a wide range of cancers,
particularly those of the lung and upper aero digestive tract. A reduction
in smoking is a major target of the Health of the Nation programme. For
instance, 80-90% of lung cancer is attributable to smoking.
The earlier in life regular smoking is begun, the greater is the risk of
lung cancer and heart disease later in life.
In the 1992 survey carried out by the OPCS on behalf of the DH, 21% of
boys and 25% of girls aged 15 years and still at school were smoking
regularly. Allowing for the latent period for lung cancer, the incidence
of even this one disease will be undiminished and will be extremely costly
both in terms of life and money.
If elements of smoking control which are acceptable and meaningful to
young people can be identified and used as the basis for interventions,
their effectiveness in delaying the onset of smoking would be intensified.
The consequent effect would be, in the long term, a reduction in the
incidence of lung cancer and heart disease, both of which are very costly
to the NHS in terms of treatment. In the short term, delaying or reducing
smoking among young people would have a direct and immediate health
effect. Children who smoke are more likely than non-smokers to suffer from
minor ailments such as coughs, colds, sore throats and earache and
consequently to require treatment and to have time off school. This set of
circumstances can be perpetuated when these young smokers are later
themselves parents and affect the health of their own offspring.
To investigate ways to bring about behavioral changes leading to a
reduction of smoking at all ages, particularly children, and evaluate the
cost effectiveness of different approaches. Success of programmes should
be assessed not only in terms of children exposed to the intervention but
in actual outcome. Costs need to be weighed against those incurred through
the NHS of treatment of established diseases.
Effective interventions will reduce the incidence of many cancers most of
which are not curable by current means. Morbidity and death rates can be
reduced by this approach.
The organisation and evaluation of services, including medical,
psychosocial, counselling and other services, to meet the needs of those
found to be at high risk of cancer due to a genetic susceptibility
During the past few years a number of genes, which in mutant form confer
an increased risk of cancer, have been identified and characterised. These
include genes for retinoblastoma, Wilm's tumour, neurofibromatosis,
multiple endocrine neoplasia II, adenomatous polyposis coli, von
Hippel-Lindau syndrome and the p53 gene, which when mutated in the
germline predisposes to a variety of cancers. It is technically feasible
to test for the presence of constitutional mutations in these genes in
persons suspected to be carriers. However, such mutations are rare in the
general population. Genes which have been located but not yet identified
include the BRCA1 gene, which predisposes to breast and ovarian cancers,
two genes for hereditary non-polyposis colon cancer, and the ataxia
telangiectasia (AT) gene. Persons heterozygous for the AT gene appear to
be at increased risk for a number of cancers including breast. At present
it is possible to assess carrier status for these genes by linkage
analysis in large informative families or by inference (i.e. obligate
carriers) in certain other families. Once these genes are identified and
characterised it will be possible to test individuals for carrier status
regardless of family size and structure.
For those more common genes such as BRCA1, the gene for AT, and genes for
hereditary colon cancer, the issue of general population screening arises.
The identification of carriers of cancer susceptibility genes could be of
great public health benefit, subject to the availability of efficient
techniques for early detection of cancers which offer increased chance of
cure, and advice on lifestyle habits to reduce cancer risk. As an
alternative to general population screening, selected groups could be
targeted e.g. all women with a first degree relative with breast cancer
diagnosed under age 50 could be screened for BRCA1. In addition,
individuals with a family history of cancer, or members of families with
cancer predisposition syndromes, may present themselves to be referred for
counselling, testing and screening.
As more genes are identified and with advances in molecular biological
techniques for detecting mutations, there is likely to be an increasing
demand for genetic testing. The management of those found to be carriers
of high risk genes is uncertain. Screening for early detection of specific
cancers is frequently advocated, but for some cancers e.g. premenopausal
breast, this is of unknown effectiveness. The social and psychological
effects of being found to be a carrier are also unknown.
In order to avoid uncoordinated piecemeal services being set up for this
group of people, various questions need to be answered by research.
||What is the potential workload if all individuals
at high genetic risk of cancer request advice and/or screening and
what is the present unmet need?
||What is the likely uptake of such a service among
those at risk?
||How many dedicated laboratories with coordinated
genetic counselling services are needed in the UK?
||How should they be linked to primary care for
||How should they be linked to screening programmes
for different cancers and how should the performance be monitored?
||What are the social and psychological effects of
being identified as being at risk?
||How can age-specific cancer incidence and cancer
mortality be monitored in high risk individuals?
||What are the resource costs of providing a service
for genetic testing, counselling and management of high risk
Identification of individuals with high risk of cancer due to genetic
susceptibility and their management is a major challenge to the NHS
requiring appropriate choices of management and service provision.
Factors influencing delayed presentation by patients (e.g. psychosocial)
and variations in onward referrals by physicians to oncology specialists
Delay in responding to symptoms may be associated with later stage at
presentation (1) and shorter overall survival (2). The psychological
factors underlying the variability in time to presentation are poorly
understood, although suggestions have been made (3). If risk factors
within the population who delay seeking medical attention could be
identified, proactive interventions in primary care could be developed.
Studies in the international literature on cancer survival in relation to
patterns of care indicate improved outcomes are associated with
specialised care for uncommon cancers (4). Some studies also suggest this
association exists for the more common cancers. The care of cancer
involves the primary, secondary and tertiary services. Variations in
onward referrals between clinicians will result in variation of care.
Objectives and justification
Understanding why such variation in referral occurs may allow
interventions which should lead to consistency of better care.
||Richardson JL et al. Stage and delay in breast
cancer diagnosis by race; socioeconomic class, age and year. Br J
||Ellwood M, Moorehead WP. Delay in diagnosis and
long term survival in breast cancer. BMJ 1980;280:291-94
||Greer S. Psychological aspects; delay in the
treatment of breast cancer. J R Soc Med 1974;67:470-3
||Harding MJ et al. Management of malignant teratoma;
does referral to a specialist unit matter? Lancet 1993;341:999-1002
Factors influencing the accrual of patients into cancer trials
Without doubt randomised clinical trials are needed to evaluate new and
much needed treatments for the benefit of future cancer patients. Such
trials have been highly influential in changing the clinical management of
common cancers. Also, there is evidence to suggest that the outlook is
better for those patients who are included in clinical trials. However,
except for the childhood cancers, the leukaemias and some of the rare
tumours, a small proportion of eligible patients are entered into trials.
Adequate support for clinicians entering patients, failure to obtain
consent and inadequate infrastructure for trials are all suggested to
contribute to this shortcoming.
Understanding more about what inhibits the accrual of patients into
randomised trials may help point to ways which will influence a desirable
Clinical trials are a major tool in evaluating cancer care. Methods to
increase accrual into studies, when appropriate questions have been
identified, are urgently needed.
||Gelber RD, Goldhirsch A. Can a clinical trial be
the treatment of choice for patient with cancer? J Natl Cancer Inst
||Early Breast Cancer Trialists Collaborative Group.
Systematic treatment of early breast cancer by hormonal, cytotoxic
or immune therapy. Lancet 1992;339:1-15, 71-85
||Williams CJ ed. Introducing new treatments for
cancer: practical, ethical and legal problems. Chichester, Wiley
Studies designed to explain variations in disease outcomes, particularly
in relation to variations in patterns of practice
There is considerable geographical variation in standardised mortality
rates from certain cancers both within the UK and internationally. It is
thought to be unlikely that these differences in cancer survival are
entirely due to known problems with the quality of data in cancer
Studies usually do not include sufficient information to consider the
patient and tumour prognostic variables which may relate to the observed
outcome variations. A small number of studies point towards patterns of
practice being relevant to outcome. This has been shown in ovarian and
colorectal cancers, testicular cancer and paediatric oncology.
Objectives and Justification
Further studies are needed to extend this work into other tumour types and
more importantly, to include studies designed to understand the genesis of
the variations are needed and assess the quality of outcomes as well as
||Silman AJ, Evans JW. Regional differences in
survival from cancer. Commun Med 1981;3:291-97
||Gillis CR et al. Medical audit, cancer registration
and survival in ovarian cancer. Lancet 1991;337:611-12
||McArdle CS, Hole D. Impact of variability among
surgeons on post-operative morbidity and mortality and ultimate
survival. BMJ 1991;302:150-1
||Wilson S, Prior P, Woodman CBJ. Use of cancer
surveillance data for comparative analyses. J Public Health Med
Comparison of care for common cancers in specialist and non-specialist
treatment settings with respect to psychosocial and clinical outcomes; and
the relative costs of managing each step of disease progression
Patients with cancer may receive care in specialist or non-specialist care
settings, or in a combination of both settings for specific active phases
of treatment and for palliative care. For example, in advanced cancer, 19%
of patients are admitted to a hospice at some point and 29% receive care
from specialist community teams (1). However, these proportions vary
greatly throughout the country (2). The benefits and disadvantages of
these different treatment settings are poorly researched, especially
with respect to psychosocial outcomes. Research is
needed to compare clinical and psychological outcomes resulting from care
in the different settings and to identify which types of patients and
families will benefit most from care in the different settings.
To compare clinical and psychological outcomes for patients cared for in
different settings with different degrees of specialist involvement and
evaluate cost effectiveness in the different settings. Studies may be
appropriate in primary care, early management, specific surgical or active
non-surgical treatment and palliative care.
To establish appropriate options for care and for service developments
ensuring best clinical and psychological outcomes for cancer patients.
||Addington-Hall J. Regional study of care of the
dying. Feedback for Health Districts. London: University College
||Higginson I. Palliative care: a review of past
changes and future trends. J Public Health Med 1993;15:1:3-8
The clinical utility of second-line chemotherapy in advanced common
cancers, particularly its comparison to best supportive care
The role of second-line chemotherapy in advanced cancer is understood to
be palliative. Often treatments are given which have not been formally
proven to be of benefit in the particular type of cancer being managed and
these drugs have not been approved for such use by the licensing
authorities. It is probable that these treatments are administered not
infrequently more in hope than expectation of benefit, and because of a
strong desire to be perceived as not having given up therapeutic hope.
Chemotherapy may be toxic and is potentially dangerous. It may lead to
both a deterioration in the quality of life as well as a reduction of
life. The option not to have a specific anti-cancer treatment is very
difficult to define, present or measure. Surveys of attitudes suggest that
the frequency of ineffective interventions is unlikely to be reduced
unless the professional and lay view of best supportive care is more
Research into the clinical utility of chemotherapy in these circumstances
and how it compares with alternative management strategies such as best
supportive care is required.
Better definition of clinical utility (or lack thereof) for chemotherapies
in these settings and a clearer understanding of patients' reasons for
wishing to receive it or not and of professionals' wish (or not) to
deliver it, should lead to more informed choices which may improve
outcomes and may reduce toxicity and cost.
||Maher EJ, Jefferis AF. Decision making in advanced
cancer of the head and neck; differences in perspective between
doctors and patients: future avenues for research . Palliat Med
||Maher EJ. The influence of national attitudes on
the use of radiotherapy in advanced and metastatic cancer with
particular reference to differences between the United Kingdom and
the United States of America: implications for future studies. Inst
J Radiat Oncol Biol Phys 1991;20:1369-1373
Effective ways of helping health professionals break bad news, elicit
concerns and respond to patients and relatives for their best
The extent to which cancer patients perceive that information given about
their illness and treatment was adequate to their needs appears crucial in
determining their subsequent psychological adjustment (1). Those who feel
they were given too much or too little information are much more likely to
develop clinical anxiety and/or depression (2). Moreover, these affective
disorders are more likely if patients' concerns about their predicament
remain undisclosed and unresolved (3). Unfortunately, few health
professionals have been taught effective ways of breaking bad news,
eliciting and responding to patients' concerns (4). Yet this is a source
of considerable stress for them and leads to emotional exhaustion (5).
Ways of helping health professionals break bad news, elicit and respond to
patients' concerns need critically to be evaluated. This would also have
great utility in relation to treating other forms of bad news.
Improvements in professional skills in this area should reduce the
psychological morbidity of cancer.
||Fallowfield LJ, Hall A, Maguire GP, Baum MJ.
Psychological outcomes of different treatment policies in women with
early breast cancer outside a clinical trial. BMJ 1990;301:575-580
||Hopwood P et al. Factors relating to the
communication of a cancer diagnosis and the impact on early
adjustment. Qual Life Res 1993;2:49
||Parle M, Jones B, Maguire P. Coping with multiple
demands of cancer: patients' appraisal patterns, coping responses
and mental health. Psycho-Oncology (Abs) In press
||Simpson M, Buckman R, Stewart M, Maguire P, Lipkin
M, Novack D, Till J. Doctor-Patient communication: The Toronto
Consensus Statement. BMJ 1991;303:1385-87
||Ramirez AJ, Graham J, Richards MA, Cull A, Snashall
DC, Leaning M, Gregory WM, Hanks GW, Timothy AR. Work-related
distress among cancer clinicians. British Psychological Oncology
Group Annual Conference (1993)
Optimal management strategies for unrelieved symptoms, including pain and
non-pain, in cancer patients
Symptom control has improved greatly in recent years. Standard approaches
escalating from simple analgesics to opiates will be successful in
controlling pain in most patients but in some patients control may be
unsatisfactory. Unrelieved pain may be a consequence of inadequate
treatment or, with incident and neuropathic pain, it may result from
apparent resistance to seemingly optimal treatment.
Anorexia and asthenia, dyspnoea and sometimes nausea and vomiting may be
intractable to all available treatments. A knowledge of the incidence of
these problems and a cost benefit analysis of simple versus more complex
treatment strategies would allow the development of an algorithm to
facilitate the management of these different symptoms.
To assess accurately the scale of the problem of unrelieved symptoms in
cancer patients and evaluate existing and new treatment approaches. These
may include the introduction of new drugs and methods, better usage of
existing treatments and the impact of new service configurations.
Symptom control is a useful determinant of quality of life in cancer
||Higginson I, McCarthy M. Measuring symptoms in
terminal cancer: are pain and dyspnoea controlled? J R Soc Med
||Dunlop GM. A study of relative frequency and
importance of gastrointestinal symptoms and weakness in patients
with far advanced cancer: student paper. Palliat Med 1989;4:37-43
||Hanks GW, Justins DM. Cancer pain: management.
The most appropriate and cost effective model of service delivery and
level of provision of palliative care services, including the role of
nurse practitioners in hospitals and the community, and for the care of
patients dying in acute hospitals
Specialist palliative care is provided by hospices and NHS palliative care
units, by hospital palliative care teams, home care and day care services.
Some patients also require long stay care. The components and balance of a
model system for a health care district have not been determined. Service
provisions have been more influenced by local fundraising efforts than by
Interest is increasing in alternative mixes of skills in palliative care
teams and in extending the scope of the role of the nurse. Routine,
regular monitoring of patients with advanced cancer is critical, but
costly. It is not yet known which health care professionals might be best
used to support this group of patients.
Most patients who die from cancer, die in an acute hospital bed. The
advantages and disadvantages of designated palliative care beds in an
acute hospital setting are not known. There is a lack of evaluative
information about the composition and effectiveness of hospital palliative
Research to clarify the most appropriate and cost effective models for
delivering palliative care services is needed. This should include testing
alternative approaches including different mixes of health care
professionals in teams and the value of designated beds for palliative
care in an acute hospital.
Further appropriate developments in these services should reduce morbidity
and increase patient and carer satisfaction. Equity of quality and access
for these services is essential.
||Smith AM et al. Palliative care services in Britain
and Ireland 1990 - an overview. Palliat Med 1992;6:277-91
||Castledine G. The Advanced Nurse Practitioner Parts
1 and 2. Nursing Standard 1991;5 Nos. 43,44:33-36
||O'Neill WM et al. Hospital palliative care
services: three models in three countries. J Pain Sympt Manag 7;
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