abstracts of the 1999 british psychosocial oncology society annual conference

PSYCHO-ONCOLOGY

Psycho-Oncology 9: 355–364 (2000)

ABSTRACTS

ABSTRACTS OF THE 1999 BRITISHPSYCHOSOCIAL ONCOLOGY SOCIETY ANNUAL

CONFERENCE1

FAMILY HISTORY BREAST SCREENING: A TRIAL OFNURSING CARE

Booth, K.a, Ellis, I.H.b, Bogg, J.b, Leinster, S.J.ba Uni6ersity of Manchester, b Uni6ersity of Li6erpool

A controlled study was carried out to investigate the effects ofa programme of teaching breast self-examination to women athigher than average risk of breast cancer.At present surveillance via mammography plus annual clinicalfollow-up remains the mainstay of management for many suchpatients, despite future possibilities for some patients such asgene testing, prophylactic mastectomy or chemoprevention.Patients in surveillance programmes are encouraged to main-tain a high degree of breast awareness between clinic visits.The literature however, suggests that higher than average riskwomen require specific help if they are to follow this adviceeffectively.Two patient groups, 160 women at initial appointment and 91attending annual follow-up were randomized to routine familyhistory clinic care or to specialist nurse intervention. In theintervention the nurse examined women (after family historyrisk assessment), and taught self-examination together withbreast awareness. Patient outcomes (assessment of breastawareness, self-examination practice, HADS and GHQ), weremeasured at clinic appointment and 1 year later.Results indicate that the specialist nurse was appreciated bypatients, and that clinical problems were identified satisfacto-rily in both arms of the study. Psychological distress was lowoverall and genetic risk level was proportionally similar in allgroups. At 1 year, breast awareness and self-examinationpractice was significantly higher in intervention group patientswhose genetic risk status was assessed as high also in those atno increased risk. However, no significant difference wasobserved in patients at medium risk.The paper will discuss patient care implications, in particularbreast self-examination advice for this patient group.

DO RELAXATION AND GUIDED IMAGERY IMPROVESURVIVAL IN WOMEN WITH LOCALLY ADVANCED

BREAST CANCER?Walker, M.B.a*, Walker, L.G.b, Simpson, E.b, Hutcheon,A.W.b, Sarkar, T.K.b, Heys, S.D.b, Ah-See, A.K.b, Eremin,O.ca Institute of Rehabilitation, Uni6ersity of Hull, b Uni6ersity ofAberdeen, cUni6ersity of Nottingham

Recent interest has focused on the possibility that psychosocialinterventions may prolong survival. However, randomized tri-als have reported inconsistent findings.The aim of this study was to evaluate the effects of relaxationand guided imagery on survival.Ninety-six patients were followed up for a mean of 68 months(S.D. 8 months) after the diagnosis of locally advanced breastcancer. They had taken part in a randomized, controlled trialto evaluate the psychoneuroimmunological effects of relax-ation therapy and guided imagery. We have previously re-ported that the intervention had statistically significant effectson host defences, mood, coping and quality of life. There wasalso a very low incidence of psychiatric disorder in the inter-vention and control groups.Twelve (25%) of the patients in the intervention group, and 14(29%) of the patients in the control group, have had diseaserecurrence and are alive. Twenty-six (27%) of the 96 patientshad died. Univariate analysis (Log rank test) found no signifi-cant difference between the two groups for recurrence (p=0.64) or survival (p=0.62). Multivariate analysis (Coxproportional hazards: simultaneous entry) produced the fol-lowing results: intervention, p=0.42; tumour size, p=0.0004;clinical response, p=0.07; ER status, p=0.08, age, p=0.27;clinical nodal status, p=0.76.Although there was a trend towards prolonged survival in theintervention group, this was not statistically significant. Thefailure of previously established prognostic factors to achievestatistical significance (apart from tumour size) suggests that itmay be premature to evaluate the effect of the intervention onsurvival in this sample and that longer term follow-up wouldbe appropriate.

RELAXATION AND HYPNOTHERAPY: LONG TERMEFFECTS ON THE SURVIVAL OF PATIENTS WITH

LYMPHOMAWalker, L.G.a*, Ratcliffe, M.A.b, Dawson, A.Ab

a Institute of Rehabilitation, Uni6ersity of Hull, b Uni6ersity ofAberdeen

The aims were: (1) to evaluate the long-term effects of relax-ation with, or without, hypnotherapy on survival and (2) toexamine other putative psychosocial prognostic factors.Sixty-three patients were followed up for a mean of 13 years 9months (S.D. 11 months) after the diagnosis of Hodgkin’s1 Asterisk (*) after author’s name throughout denotes speaker.

Copyright © 2000 John Wiley & Sons, Ltd.

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disease or non-Hodgkin’s lymphoma. Immediately followingthe diagnosis, they had taken part in a randomized, controlledtrial to evaluate the effects of relaxation therapy and hyp-notherapy as an adjunctive treatment for chemotherapy sideeffects.Thirty-five of the 63 patients had died. Univariate analysis(Log rank test) adjusted for L-scores showed that, overall, theinterventions were superior to the control procedure (p=0.02). More detailed analysis indicated that individuals scoring7 or more on the L-scale of the Eysenck Personality Inventory(in this context a measure of social conformity) were mostlikely to benefit from a psychological intervention. Multivari-ate analysis (Cox proportional hazards) confirmed that theinterventions prolonged survival, even when stage of diseaseand age at presentation were taken into account. As previouslyfound at 5-year follow-up, depression scores (Hospital Anxietyand Depression Scale) at diagnosis were also an independentpredictor of survival.This long-term follow-up study has shown that relaxationwith, or without, hypnotherapy prolonged survival in thesepatients with lymphoma. High levels of social conformity andhigh depression scores at diagnosis were independent predic-tors of poorer survival. If these findings can be replicated,there are obvious implications for the management of patientswith lymphoma.

THE PSYCHOLOGICAL DISTRESS ASSOCIATED WITHWAITING FOR THE RESULTS OF DIAGNOSTIC

INVESTIGATIONS FOR BREAST DISEASEPoole, K., Hood, K., Davis, B., Monypenny, I.J., Sweetland,H., Webster, D.J.T., Lyons, K., Mansel, R.E.The Rapid Access Breast Unit, Uni6ersity Hospital of WalesNHS Trust, Cardiff

The establishment of one-stop diagnostic breast clinics havebeen based upon the premise that speedier diagnosis is psycho-logically beneficial to women, and waiting for results is detri-mental. To date studies have been concerned with evaluatingthe impact of recei6ing results in different clinic structures,rather than detailing the psychological distress associated withwaiting for these results. A cohort of 126 women (66 subse-quently diagnosed with breast cancer, 60 with benign breastconditions) waiting 3 days for results completed anxiety (StateTrait Anxiety Inventory), daily mood (Profile of Mood States)and coping (Daily Coping Scale) measures. Semi-structuredinterviews were conducted with 20 women 2 weeks post-diag-nosis. Immediately following triple assessment, the cohortcould be divided into ‘low’, ‘moderate’ and ‘high’ anxietygroups. There were significant between-group differences foreach of the mood subscales (composed-anxious F2,94=19.89;pB0.0001, confident-unsure F2,95=16.15; pB0.0001, clear-headed-confused F2,95=15.66; pB0.0001, elated-depressedF2,95=16.59, pB0.0001), but the magnitude of distress re-mained stable throughout the peri-diagnostic period. 75.5% ofthe cohort recorded mean POMS scores comparable to andexceeding those reported by psychiatric out-patients. Thosewomen leaving the clinic with low anxiety had significantlylower trait anxiety than other cohort subjects (F2,95=5.18;pB0.007). Qualitative data suggested that the delayed-resultsclinic structure may facilitate psychological preparation fortest results.In conclusion, peri-diagnostic mood is associated with anxietylevels immediately following triple assessment. Waiting for theresults of diagnostic investigations for breast disease sustains

but does not exacerbate psychological distress. There is prelim-inary evidence to suggest that this may be an importantopportunity for psychological preparation. Reprinted fromThe Breast (8(4), 229) Poole et al. By permission of thepublisher Churchill Livingstone.

TREATMENT DECISION-MAKING PREFERENCESAND INFORMATION NEEDS OF PEOPLE WITH

COLORECTAL CANCERBeaver, K.a, Bogg, J.b, Luker, K.A.ca Macmillan Practice De6elopment Unit, Uni6ersity ofManchester, b Department of Clinical Psychology, Uni6ersity ofLi6erpool, c School of Nursing, Midwifery and Health Visiting,Uni6ersity of Manchester

An exploratory study was carried out to examine treatmentdecision-making preferences and information needs for peoplewith colorectal cancer (n=48). A cross sectional design wasemployed involving structured interviews and using valid andreliable measures of decision-making preferences and informa-tion need. A card sort technique was used to establish deci-sion-making role preference and perceived decisional role. AnInformation Needs Questionnaire was used to establish ahierarchy of information needs.The majority (78%) of the sample preferred to play a passiverole in decision making while 80% perceived that the doctorhad made treatment decisions. An investigation of the dis-crepancy between preferred and perceived role indicated that60% of the sample had realized their preferred role. Priorityinformation needs related to cure, spread of disease andtreatment options. This work will be compared and contrastedto previous work with women with breast cancer (n=150)that utilized the same decision making and information needsmeasures (Beaver et al., 1996; Luker et al., 1996). The twomost striking findings from the comparison between the twodisease groups relate to the differences in decision-making rolepreferences (people with colorectal cancer were more passivein their preferences) and the similarities in information needs.The process of involving people with colorectal cancer intreatment decision making warrants further investigation. Thesimilarity in information needs of the two disease groups hasimplications for health care professionals providing informa-tion to people with cancer.

FOCUS GROUP EVALUATION OF A CANCERCOUNSELLING SERVICE

Walker, G., Adewuyi-Dalton, R., Young, J., Allen, L., Poirier,J., Maher, E.J.Lynda Jackson Macmillan Centre, Mount Vernon Hospital,London

The counselling service at The Lynda Jackson MacmillanCentre for Cancer Support and Information is provided bythree qualified counsellors, all of whom are also health profes-sionals with oncology experience. Patients are assessed usingstandardized criteria, and are offered a course of six sessionsof counselling. In 1998 a total of 511 counselling sessions tookplace in the centre.To use focus groups to evaluate the service from the patient’spoint of view, looking both at its perceived effectiveness and atthe practicality of using the service.Two focus groups were attended by a total of 14 patients (12women and two men) who had completed a course of coun-

Copyright © 2000 John Wiley & Sons, Ltd. Psycho-Oncology 9: 355–364 (2000)

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selling within the past 6 months. The groups were facilitatedby experienced researchers, using a series of questions agreedby the counselling team. The transcribed tape recordingswere analysed using grounded techniques.Only three participants had referred themselves; others werereferred by a range of health professionals, and several com-mented that they needed someone else to take the initiative.The reasons for referral included inability to express feelings,depression, anger, panic attacks, failure to cope alone. Par-ticipants were not all aware of what to expect, and somewere surprised by the range of topics covered in their ses-sions. Aspects of counselling patients found particularlyhelpful included expressing strong and often negative emo-tions without fear of upsetting family and friends, puttingthings into perspective, coming to terms with difficult rela-tionships both in the past and in present, gaining confi-dence, taking control of their lives. The counsellors wereseen to have drawn people out by asking the right ques-tions, listening more than talking, offering confidentiality,and helping them to understand themselves and others. Notall patients knew of their counsellors’ specialist cancerknowledge, and opinion was strongly divided about itsvalue; some regarded it as essential, while others believedthat it could interfere with good communication. Partici-pants also appreciated the open-ended nature of the contractwhich offered them the security of knowing where to findhelp in a crisis.Patients are unlikely to obtain counselling unless referred,and appreciate a flexible contract. Counsellors should ideallyhave cancer knowledge but use it only when necessary. Pa-tients perceive counselling as different from talking to familyand friends.

DISTRESS AND CONCERNS OF THE PARTNERS OFPATIENTS WITH BREAST CANCER WHO RECEIVE

PRIMARY CHEMOTHERAPYAnderson, J., Walker, M.B., Walker, L.G.Institute of Rehabilitation, Uni6ersity of Hull

The diagnosis and treatment of cancer are stressful experi-ences and a high incidence of psychosocial morbidity hasbeen commonly reported. However, the effects on partnershave been relatively neglected.The aims were to evaluate the levels of distress and theconcerns of partners of women with breast cancer followingdiagnosis and during primary chemotherapy.Psychosocial morbidity was assessed using the Hospital Anx-iety and Depression Scale and the General Health Question-naire: before the first, second, fourth and eighth cycles ofchemotherapy and before surgery. The concerns of patientsand partners were assessed, using a 30-item checklist, beforethe first and fourth cycles and before surgery.Thirty four patients and their partners took part in thestudy. Partners were significantly more depressed (HADSdepression) than patients following the diagnosis (t=2.04,p=0.04). Repeated measures analysis of variance indicatedchanges in depression over time in patients and partners(F=3.7, p=0.01). Following the diagnosis, the scores ofpartners fell sharply then closely mirrored those of patients(int. F=3.4, p=0.002). HADS anxiety (F=12.8, p=0.0005) and HADS total distress (F=7.3, p=0.0005) de-creased over time in patients and partners. The initialnumber and intensity of the concerns of patients and part-ners were correlated with HADS total distress (r=0.68, pB

0.0005; r=0.34 p=0.05, respectively). There was asignificant decrease in concerns during chemotherapy for pa-tients and partners (F=13.1, pB0.0005). Although the totalnumber and intensity of concerns was similar for patientsand partners following the diagnosis, partners were signifi-cantly more concerned about disease progression (t=2.2,p=0.03) and the patient’s ability to cope with cancer (t=4.9, pB0.0005). Patients were more concerned about theeffects on the family (t=2.0, p=0.05), the effects onlifestyle (t=3.3, p=0.002) and body image and self-esteem(t=3.6, p=0.001).In this study, partners were more distressed than patients atthe time of diagnosis. Moreover, their concerns differedfrom those of patients. Different approaches to meeting theemotional needs of partners, and dealing with their con-cerns, need to be developed and evaluated.

WORKING WITH AMBIVALENCE: A QUALITATIVESTUDY OF INFORMAL CARERS OF PATIENTS WITH

ADVANCED ILLNESSHarding, R., Higginson, I.Department of Palliati6e Care and Policy, Guy’s King’s &Thomas’ School of Medicine, London

Although studies have reported high levels of support needsamong informal carers of the terminally ill, the form andmost appropriate delivery for this are unclear.Our study aims to investigate the support and informationalneeds of carers, and to develop and evaluate a short-termgroup intervention. The initial stage addresses the feasibilityof the intervention and evaluation, which will inform thepilot of the trial in two palliative care services.From patients attending two palliative home care services, apurposive sample of 18 adult informal carers was generated,profiling a broad range of carer characteristics (includingfour bereaved carers). The semi-structured interview schedulefocused on the experiences and perceived needs of carers,and reactions to the appropriateness of services and inter-ventions. Transcriptions were and coded and analysed withNVivo software for qualitative data using a grounded ap-proach, and patterns interpreted in the context of the rangeof carer identities.Carers described themselves as invisible and part of the pa-tient. Their mood and the shape of their daily lives waslargely dictated by the health and mood of the person theycare for. Although strongly influenced by the patient’s expe-rience, carers were aware of their own exhaustion, frustra-tion and the need to escape. They acknowledged their stressand anxiety, but also sometimes felt their needs could not bemet or understood however well meaning the service. Dis-tractions (shopping, a meal out, time alone to read) werehighly valued coping strategies, but paradoxically were alsosources of further distress while they were separated fromthe patient. Carer ambivalence to their own needs, and thedesire to fulfil their duty of care by staying with the patientis a central concept in understanding how carers can best besupported.There is a growing body of evidence on the support needsof informal carers. In order to begin effectively supportingthem with appropriate services, we must understand andwork with their feelings of ambivalence towards copingthrough their expressed need for time away from caring.


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MEN’S EXPERIENCE OF RADIOTHERAPY FORPROSTATE CANCER EXPLORING THE UTILITY OF

QUALITY OF LIFE DATAFaithfull, S.Institute of Cancer Research, The Royal Marsdens NHS Trust,Sutton

This study set out to explore the physical and psychosocialimpact of radical pelvic radiotherapy for men undergoingprostate cancer treatment and its subsequent impact on qualityof life.This study combined quality of life data from two projects. Aninitial qualitative study (n=33) and a longitudinal RCT (n=115). Data were collected in the first study using semi-struc-tured interviews, priority listing cards and quality of lifeassessments at different cross sectional time points of treat-ment. In the second study data were collected longitudinallyusing the EORTC QLQ-C30 questionnaire plus additionaldisease specific questions at the beginning of treatment, 6weeks, 12 weeks and 18 weeks since the start of radiotherapy.The sample in the combined studies was of men undergoingradical radiotherapy for prostate (114) or bladder cancer (34).Men demonstrated high levels of functional and emotionalwell being throughout the time of radiotherapy, but distinctdifferences were seen in quality of life from those men whohad prostate cancer compared to those men with bladdercancer. Disease-specific symptoms were considered to be moreof a problem. Qualitative data yielded information on men’sbeliefs about their disease and subsequent treatment and raisedpossible explanations for the high global scores of quality oflife in men with prostate cancer.Quality of life is an important issue for men with prostatecancer. Side effects of treatment are often considered alongsidecancer therapy’s impact on quality of life. Therefore under-standing the utility of current quality of life measures indifferent patient populations is important for health care.Generic measures of quality of life characterize patient experi-ences in broad terms, allowing comparisons across patientgroups, but it appears insensitive to some significant effects ofprostate cancer.

RECENT TRENDS IN THE PLACE OF DEATH OFCANCER PATIENTS: A CANCER REGISTRY BASED

STUDY IN YORKSHIRE REGION (1989–1996)Amir, Z.a, Haward, R.A.a, Lane, R.C.b, Barker, E.A.aa Uni6ersity of Leeds, NYCRIS, b Dewsbury Health Care NHSTrust

The development of modern palliative care services coupledwith the growing emphasis on patient choice in cancer carehave focused attention on the terminal care of cancer patients.We used cancer registry data to examine trends in the place ofdeath of Yorkshire cancer patients between 1989 and 1996,and the relationships of selected socio-demographic and clini-cal variables to the place of death. Associations between placeof death and other variables (gender, age, marital status, siteof cancer, duration of illness-diagnosis to death, and socioeconomic profile) were examined using the chi-square test andPearson correlation (r). The proportion of Yorkshire cancerpatients aged under 65 years fell gradually, and the mean ageat death increased very slightly. The proportion who died inan NHS hospital fell gradually. Over the same period thepercentage who died at home declined slightly. This declinewas most marked during the period of greatest proportionalincrease in hospice deaths. A range of individual factors which

help to influence where death occurs, including demography(age, gender, place of residence and social class) and clinicalfactors (length of survival and type of cancer) was found.Monitoring the trends in place of death is an importantindicator of the equity of provision of palliative and terminalcare services. A range of service models are required to copewith different combinations of clinical need, personal circum-stance, and patient and carer choice. In the patient centredmodel of care advocated in national cancer policy there oughtto be a gradual move to a pattern which more closely accordsto the expressed wishes of patients. This ought to result in acontinued decline in NHS hospital deaths, with an increase inhome deaths based on the necessary support being available atthe end of life.

PUTTING THE PSYCHO-INTO ONCOLOGY: WHATDOES A CANCER CENTRE WANT AND HOW

CAN IT BE PROVIDED?Owen, R.Health Psychology Department, Gloucestershire Royal Hospital

The provision of cancer services in England and Wales hasundergone major reorganization since the ‘Policy Frameworkfor Commissioning Cancer Services’ (usually referred to as theCalman–Hine Report) was published in 1995. Potential Can-cer Units and Cancer Centres undergo an accreditation proce-dure requiring them to demonstrate that the relevantstandards of service are being met. However, whilst theCalman–Hine report advocates good psychosocial care, itdoes not specify what form this should take.This presentation reports the process undertaken by onenascent Cancer Centre in attempting to identify the psychoso-cial needs of its patients, the extent to which current servicesmeet these needs, and (where necessary) proposals to fillshortfalls in services. Data is presented which arises from thereports of site-specific review groups (e.g. colorectal cancer,lung cancer), and cross-site groups dealing with more explicitlypsychosocial issues (e.g. psychosocial care, information needs).This information will be used to address the following keyissues for applied psychosocial oncology:

– What do our colleagues understand psychosocial care tomean?

– How do they see it being provided, and by whom?– To what extent do psychosocial ‘specialists’ see it

differently?– How are competing demands to be resolved?– What structures can accommodate different sets of needs?– How should we manage the transition from needs assess-

ment into implementation of change?

PATIENT PERCEPTIONS IN DOCTOR–PATIENTCONSULTATION: DO PATIENTS UNDERSTAND

THEIR DIAGNOSIS FROM THE WORDSDOCTORS USE?

Alden, P.A., Gilbert, P., Webb, T.Department of Clinical Oncology, Derbyshire Royal Infirmary

Observations suggest that when the word ‘cancer’ is not used,but words such as ‘growth’, or ‘tumour’ are used to symbolizecancer, one cannot assume that the patient will understandthat a diagnosis of cancer is being given.


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To test this, the following study was carried out. A series ofnine randomized scenarios pertaining to diagnosis were con-structed. Each contained diagnostic information with respectto a set of symptoms and concluded with treatment informa-tion including radiotherapy (X-ray treatment) and chemother-apy (special drug treatment). Words such as ‘tumour’, and‘abnormal cells’ were used. Cancer was never mentioned.Subjects were asked to listen to each scenario, choose adiagnosis from a list, and rate how confident they were in theirchoice as a percentage. The questionnaire was presented to agroup of 43 second year psychology students, age range 19–41. The data was analysed according to the frequency ofdiagnoses chosen and means of percentages, etc.Results suggested that the more vague the information, the lessoften cancer was chosen as a diagnosis. Even with the words‘malignant tumour’ where almost all the subjects chose cancer,there was a significant lack of confidence in the choice.It is planned to expand this study to survey a much larger andmore comprehensive sample of the general population, as theresults potentially have implications for communication skillstraining. Many physicians and surgeons avoid the word ‘can-cer’ believing patients know what they mean. This researchwould suggest that this may not be the case, and that they aredoing patients a disservice both in terms of the informationthey give, and the patient’s response on discovering the truenature of their diagnosis.

RISK FACTORS IN THE ADJUSTMENT OF CHILDRENOF CANCER PATIENTS

Nelson, E., Hopwood, P., Maguire, P.CRC Psychological Medicine Group, Christie Hospital,Manchester

The objective of this new research was to assess risk factors inthe adjustment of children during the first year of a parent’scancer diagnosis. The aims were to consider within-groupvariability in responses and to identify the strongest factorsassociated with good or poor adjustment. The theoreticalframework was based on a cognitive model of stress andcoping and an ecological model of child development. Mixedmethods of data collection (combining standardized question-naires with semi-structured interviews) were used in order tofacilitate a more sensitive and reliable assessment of the child’sexperiences. This study was innovative in triangulating thesources of outcome measures and thus obtained self-reporteddata as well as data from parents and teachers. The studysample consisted of 80 children (34 sons, 46 daughters) aged8–16 years of 68 female and 12 male cancer patients.The results showed a prevalence of poor adjustment in 36% ofthe children, 31% of spouses and 50% of patients at one yearpost diagnosis. Multivariate analysis showed four main riskfactors to be independently associated with poorly adjustedchildren: negative appraisal of the parent’s illness (p=0.004),low self-esteem (p=0.008), a poorly adjusted parent withcancer (p=0.007) and low psychosocial support from school(p=0.01). There were indications that the children of single-parent patients were more vulnerable than children from two-parent families. There were also indications that adolescentsons may be more at risk of adjustment problems than adoles-cent daughters. The theoretical basis of this research provideda much broader picture of the factors associated with chil-drens’ adjustment in the first year of a parent’s cancer diagno-sis. The inclusion of the school environment facilitated aclearer understanding of the problems of adolescent children

and generated hypotheses for further research. The four mainindependent risk factors identified in this study are all open tointervention.

IS THE HAD SCALE A VALID TOOL FOR THEASSESSMENT OF DEPRESSION IN THE

TERMINALLY ILL?Lloyd-Williams, M., Friedman, T., Rudd, N.Leicestershire Hospice, Groby Road, Leicester

Approximately 25% of patients admitted to a Hospice willhave symptoms of depression but it is difficult to diagnosedepression in terminally-ill patients as many of the somaticsymptoms of depression are present due to advancedmetastatic disease. Several units are using the HAD scale, butthis has not been validated in the terminally-ill population.The aim was to validate the HAD scale in the terminally-illpopulation and to determine which cut-off threshold should beused.Patients receiving palliative care were asked to complete theHAD scale and also the Present State Examination—a semi-structured interview which is used as a gold standard inter-view. One hundred patients aged 25–69 years, mean age 57.2were recruited into the study. The mean scores on the HADscale was 16.7 (95%, C.I. 15.2–18.1). Using either sub scalealone the HAD scale had poor efficacy and combining thedepression and anxiety sub-scale scores marginally improvedthe sensitivity and specificity. The optimum cut-off thresholdfor identifying cases of depression on the HAD scale was at acombined score of 19 which had a sensitivity of 68% andspecificity of 67%. Several questions on the HAD scale hadpoor discriminatory function when analysed individually.The HAD scale is not a sensitive tool for assessing depressionwhen either sub-scale is used alone. The screening efficacy ismarginally improved when both scales are combined. Theabsence of somatic symptoms which have made the HAD scalepopular for use with medically-ill patients does not appear toinfluence the poor discriminatory value of this scale in theterminally-ill population. The predominant construct of theHAD scale is anhedonia which may not be pathognomonic fordepression in the terminally ill.

THE MOOD RATING SCALE: A BRIEF, ACCEPTABLE,RELIABLE AND VALID STATE MEASURE OF

NORMAL MOODAnderson, J.*, Walker, M.B., Swanson, V., Walker, L.G.Institute of Rehabilitation, Uni6ersity of Hull

In quality of life studies, there is often a need to assesstransient mood changes, including positive emotional states.The Profile of Mood States (POMS) is the current goldstandard measure of mood states. Existing alternatives alsohave limitations. However, it is lengthy (72-items) and unpop-ular with patients.The aim of the study, therefore, was to develop a brief,acceptable, reliable and valid measure of mood.The Mood Rating Scale (MRS): The MRS consists of sixvisual analogue scales with verbally defined anchor points. Thedimensions are based on the factor analytic studies underpin-ning the POMS: relaxed–tense; happy–sad; energetic–tired;clearheaded–confused; easygoing–irritable; confident–unsure.Validity, reliability and acceptability: In a recent clinical trialof 151 patients with large and locally advanced breast cancer,


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completion takes less than a minute. The individual dimensionsof the MRS correlated significantly with the correspondingdimensions of the POMS (relaxed–tense: r=0.45, pB0.0005;happy–sad: r=0.43, pB0.0005; energetic–tired: r=0.56, pB0.0005; clearheaded–confused: r=0.54, pB0.0005; easygo-ing–irritable: r=0.31, p=0.001; confident–unsure: r=0.52,p=0.001). Total MRS score (the sum of all six dimensions)also correlated significantly with each POMS dimension (r=0.57, p\0.0005; r=0.59, pB0.0005; r=0.52, pB0.0005; r=0.59, pB0.0005; r=0.32, p=0.002; r=0.58, pB0.0005,respectively). Cronbach’s alpha for the six dimensions of theMRS was 0.77. The MRS has been shown to be sensitive tochanges induced by relaxation and experimental stress inhealthy volunteers, psychological interventions in women withbreast cancer, immunochemotherapy in patients with colorectalcancer and a weekend on-call in junior medical staff.The MRS is a useful, acceptable, valid, reliable and brief statemeasure of normal mood.

CARING FOR CANCER PATIENTS AND PSYCHO-LOGICAL ADJUSTMENT WHO IS AT RISK?

Pitceathly, C.*, Maguire, P., Fletcher, I.CRC Psychological Medicine Group, Christie Hospital,Manchester

Research exploring the psychological adjustment of carers hasfocused mainly on cancer patients’ partners and althoughparticular difficulties have been identified amongst daughtersof breast cancer patients there is little comparative evidence todemonstrate whether specific groups of adult carers experiencemore adjustment problems.A consecutive sample of 223 key carers was recruited for aretrospective study, 2 years after the patients initial cancerdiagnoses. Eligibility criteria required that treating clinicianshad identified patients to have a good prognosis at diagnosis,i.e. they were certain to survive 2 years. The study aimed toidentify the prevalence of psychological problems amongst thecarers. Carers were interviewed on a single occasion at home bytrained interviewers using a semi-structured interview. A con-cerns check list (Devlen, 1984) was used to ask about theirillness-related concerns. Episodes of af2fective disorder duringthe 2 years since the cancer diagnosis were identified using thePsychiatric Assessment Schedule and DSM III-R diagnosticcriteria.Sixteen (7%) patients had relapsed when the carers wereinterviewed. The sample of key carers comprised 168 partners,27 adult children, 11 parents and 17 other friends/relatives.Twenty (12%) partners, six (23%) children, four (36%) parentsand one (6%) other friend/relative developed an affectivedisorder following the patients cancer. More female partners(24%) than male developed a disorder (7%). Most of the childcarers were daughters (22, 85%) and when the analysis waslimited to female carers there was no difference in the preva-lence of disorder between partners and daughters. There wasno difference in the prevalence of psychiatric problems prior tothe cancer reported by female partners and daughters.Partners (median=2.0) and children (median=3.0) reportedmore concerns than parents and other carers (median=1.0). Inall the groups carers who developed an affective disorderreported more illness related concerns.These results suggest that psychological difficulties followingcancer are related more to carers’ gender than to their relation-ship to the patient and that female carers should be targeted forpsychological assessment and intervention.

BEREAVEMENT SERVICES IN YORKSHIRE—A PILOT STUDY

Allon, P.H.a, Foyle, L.b, Amir, Z.ca Northern and Yorkshire Cancer Registry and InformationSer6ice (NYCRIS), b Independent Consultant in Palliati6e Care,c Uni6ersity of Leeds

The outcome of bereavement can be influenced by the level ofemotional and practical support received by the bereavedperson. Therefore, the availability of support for the bereavedfollowing anticipated death in both a NHS hospital andprimary health care is of prime significance for their well being.One hundred and fourteen health professionals working in oneHealth Authority in Yorkshire were invited to participate inthe study. Participants were asked for their opinions about thepre- and post-bereavement support they provided, their use ofrisk assessment tools and educational and emotional supportreceived.A diversity in the level of support provided within the spe-cialties (i.e. oncology, medical elderly, etc.) and received bydifferent groups of bereaved people (i.e. parents, elderly, etc.)was found. The range of support services also differed, as didthe provision of ongoing support. Pre-bereavement supportappeared to be dependent upon the existence of effectivecommunication between health professionals, the patient andtheir family. A high proportion of participants suggested waysin which the levels of bereavement support should be im-proved. Educational and emotional support appeared to beinadequate for many providers of bereavement support.Bereavement can affect people of all ages therefore a widerange of services are required if the needs of the bereaved areto be met. Meaningful communication between health profes-sionals, the patient and their family is essential. The use of anassessment tool would help in the process of identifying theneeds of the bereaved. Bereavement support within the healthservice needs to be recognized as part of the statutory careservices. Recognition of bereavement support means thathealth professionals are provided with the resources necessaryto carry out a service or to refer to other providers.

THE 90-MINUTE GROUP: DEVELOPING A SHORT-TERM INTERVENTION FOR INFORMAL CARERS OF

PATIENTS WITH ADVANCED CANCERTaylor, L., Leam, C., Harding, R.St Christopher’s Hospice, London

Caring for someone with an advanced illness has been shownto be stressful. There are few interventions aimed at supportinginformal carers.To develop a group intervention that responds to carers’ needsfor information and support and to describe its initial activityand response.The group runs from two palliative care services in North andSouth London. Ten to twelve carers are invited to attend thegroup that runs over 6 weeks, for 90 min a week. Facilitatedby social workers, the content of the sessions is multi-profes-sional. It is based on a literature review of carers’ needs,qualitative interviews with current and recently bereaved car-ers, and the report of an initial pilot group. We expect this lowcost intervention to provide appropriate information and sup-port.The group offers a forum for carers to explore together thepractical, physical, psychological, and spiritual impact of car-ing on daily life. Group members are enabled to develop


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their practical skills and to exchange effective copingstrategies.Twelve carers attended the group, and report high satisfactionwith sharing their experiences with other carers. Group mem-bers value discussing common issues and concerns, andsharing skills/resources.

EXPERIENCE OF CANCER IN THE FAMILY ANDPSYCHOSOCIAL ASPECTS OF INCREASED RISK:

THEORETICAL PERSPECTIVESRees, G., Fry, A., Cull, A.ICRF Medical Oncology, Western General Hospital, Edinburgh

Women at increased risk of developing breast cancer due totheir family history face a number of uncertainties. Personalcancer risk estimates are imprecise and the efficacy of preven-tive measures and screening in younger women remains un-proved. It is therefore not surprising that adverse psychosocialoutcomes have been described within this population. Re-search attempting to predict the incidence of distress anddysfunction has been largely atheoretical, and has conse-quently overlooked a number of theoretically important vari-ables. One factor, neglected in research to date is the subjectiveexperience of cancer in the family. This poster discusses thepotential role of subjective experience from three theoreticalperspectives in health psychology: models of behaviourchange; risk perception and decision-making; illness represen-tations. A number of aspects of experience which appeartheoretically consistent are highlighted. Systematic research inthis area may improve predictions of outcome of cancergenetic counselling and inform the clinical process.

LIVING WITH AN INCREASED RISK OF BREASTCANCER: AN EXPLORATORY STUDY USING

TELEPHONE FOCUS GROUPSAppleton, S., Fry, A., Rees, G., Rush, R., Cull, A.ICRF Psychosocial Research Group, Western General Hospital,Edinburgh

This study focuses on how women who are deemed to be at asignificantly increased risk of breast cancer, due to their familyhistory of the disease, live with this knowledge in the long-term. The aim was to generate hypotheses about the psycho-logical needs of these women that could be tested in futureresearch. The participants were 25 women with a familyhistory of breast cancer who had received genetic risk coun-selling and had consequently been attending a familial breastcancer clinic for clinical surveillance for at least 2 years. Thesewomen took part in one of seven telephone focus groups andsubsequently completed a feedback questionnaire. This novelmethodology was adopted to gain the women’s perspectives onthree main areas: the effect on their lives of knowing about anincreased risk of breast cancer, how they have been copingwith this knowledge and their needs in terms of ser6ices to helpthem to cope. Transcripts of the focus groups were analysedby the principal researcher and two independent raters toidentify prominent quotes from which themes were derived bythe principal researcher. Inter-rater agreement for the quote-to-theme assignment was tested between pairs of raters withKappa values ranging from 0.61 to 0.79. Six key issuesemerged from the data which provide an important insightinto living with an increased risk of breast cancer: psychologi-cal adaptation, family issues, clinical surveillance, provision of

information, health behaviours and peer support. These keyissues and the results of the feedback questionnaire will bediscussed from a theoretical perspective. Hypotheses generatedfrom the data will be offered about the need for interventionto promote optimal long-term coping in women living with theknowledge of their increased risk.

LONG-TERM PSYCHOSOCIAL ADJUSTMENT TOPROPHYLACTIC OOPHORECTOMY

Fry, A., Busby-Earle, C., Rush, R., Cull, A.ICRF Psychosocial Research Group, Western General Hospital,Edinburgh

This study assessed long-term psychosocial adjustment to pro-phylactic bilateral oophorectomy of women at significantlyincreased risk of ovarian cancer. In addition, it investigatedmoderating factors affecting outcome such as menopausalstatus at the time of operation and type of surgical procedureperformed. The project was a retrospective, controlled study ofwomen who had undergone prophylactic oophorectomy withinthe last 1–5 years because of their family history of ovariancancer (n=29). A comparison group comprised women atequivalently increased risk of ovarian cancer who had as yetdecided against prophylactic oophorectomy and remained onthe ovarian screening programme (n=28). Subjects were as-sessed by postal questionnaire on a number of key outcomevariables: quality of life (SF-36); psychological well-being(GHQ); specific cancer worry; sexual functioning; menopausalsymptoms; and (for the surgical group only) overall experienceof the operation. The two groups were matched for age(mean(S.D.) was 50.1(7.5) years), marital status, level of edu-cation and time since first contact with the genetics clinic.There was a trend (p=0.06) for the surgical group to reportmore gynaecological symptoms (specifically aches and pains(p=0.02), weight gain (p=0.00) and headaches (p=0.06)),and GHQ scores were significantly higher (p=0.03) in thesurgical group. There were no significant differences betweenthe groups for specific cancer worry, sexual functioning orbody image. Overall experience of the operation was better(p=0.01) and incidence of self-reported post-operative prob-lems was lower (p=0.03) for women who had undergone the‘keyhole’ (laparoscopic) rather than open procedure. Beingpremenopausal at the time of the operation predicted higherGHQ at outcome (p=0.04), and a longer subjective recoverytime (p=0.04). The results of this study suggest that womenundergoing prophylactic oophorectomy may be at increasedrisk of physical and emotional symptoms, with no compensa-tory decrease in cancer worry. Sexual function remained un-affected. Those who are premenopausal at the time of theoperation may be particularly vulnerable to increased psycho-logical distress, and may take longer to recover post-opera-tively. There is a need to confirm these findings in aprospective study of a larger sample of women.

AN EVALUATION OF THE CANCERBACUP LONDONCOUNSELLING SERVICE

Boudioni, M.a, Boulton, M.b, Ramirez, A.c, Mossman, J.a,Moynihan, C.d, Leydon, G.e, McPherson, K.ea CancerBACUP, London, b Social Sciences and Law, OxfordBrookes Uni6ersity, Oxford, c ICRF Psychosocial OncologyGroup, UMDS, London, d Institute of Cancer Research and theMarsden NHS Trust, e Cancer and Public Health Unit,LSHTM, London


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CancerBACUP has offered brief face to face counselling tothose affected by cancer. The study is a retrospective descrip-tive assessment of the service, including client characteristicsand their report of benefits, in the context of limited resources.Socio-demographic data were collected from all 384 clientswho booked an appointment over 18 months. Three hundredand two clients attended at least once and were sent anEvaluation Form; 142 (47.0%) responded. The ways in whichcounselling was perceived to be beneficial was examined usingopen-ended questions and inductive analysis. The extent towhich clients reported benefit was measured using Likert-typescales.Forty-four percent of all clients were patients; 56% wererelatives/friends. Seventy-nine percent were female; 77% wereB50 years old; 72% were from SC I and II. Of those whoreturned evaluation forms, 129 clients indicated that they feltbetter following counselling and 126 that the reason they hadsought counselling had been dealt with. Three main avenuesthrough which counselling helped and nine main types ofbenefit were identified: By allowing clients to express them-selves freely, counselling provided (i) immediate emotionalrelief. By enabling them to understand their responses tocancer, it helped them to (ii) accept their responses as ‘nor-mal’; (iii) attend to their own emotional needs, (iv) communi-cate more openly; and (v) attend to the needs of others. Byhelping clients to confront their fears of death, it helped themto (vi) feel more at ease with their diagnosis and (vii) feel lessalone in their suffering. Taking these together, it helped themto (viii) come to terms with cancer and (ix) regain control intheir lives.This study, notwithstanding its limitations, demonstrates theself-reported benefits of cancer counselling. Reasons for thisevidence of gain may include: (a) all clients were self-referred,(b) the counsellors were all trained, supervised and practisedaccording to a therapeutic model and (b) the use of a combi-nation of quantitative and qualitative approaches, as client-based outcome measures.

IS KNOWLEDGE POWER? AN EXPLORATORYINVESTIGATION OF THE EFFECT OF A SHORT

PROGRAMME OF EDUCATION AND PALLIATIVECARE PLACEMENT UPON THE ATTITUDES AND

SELF EFFICACY OF FOURTH YEAR MEDICALUNDERGRADUATES

Mason, S., Ellershaw, J.Marie Curie Cancer Care, Li6erpool

The growth and expansion of palliative care education has,naturally, mirrored that of palliative care itself. The aim ofpalliative care education and practice experience is to provideappropriate knowledge and facilitate learning that results inable and confident health care professionals who will provideoptimal care for the palliative care patient and their family. Aprime objective is the fostering of appropriate attitudes thatenable high quality care. Attitudinal theory has highlighted theimportance of congruent belief and behaviour systems forbalanced psychosocial functioning and professional compe-tency. A key factor of the belief-behaviour system relates toself efficacy; the perceived ability and capacity to perform aspecific action or behaviour. Research has demonstrated thatself efficacy exerts a strong influence on the outcome of targetactions or behaviour. This is particularly pertinent as there hasbeen much recent debate, both nationally and internationally,on the success of palliative care education in preparing healthcare professionals.

The aim of the proposed research is to conduct a pilot studyto examine the effect of a short programme of education anda palliative care placement upon the attitudes and self efficacyof fourth year medical undergraduates from the University ofLiverpool (N=216). Issues that will be addressed includecommunicating with the palliative care patient and family,patient management, multidisciplinary collaboration anddeath anxiety.Prior to participation, attitudes and self efficacy in palliativecare will be assessed via (i) focus group interview and (ii)administration of a questionnaire, developed and adaptedfrom previous research conducted by Oliver (1999), Barringtonand Murrie (1998) and Merrill et al. (1998). Following theeducation programme and placement, data will again be col-lected from both the focus group and via administration of thequestionnaire. A third data collection point will occur towardsthe end of the students undergraduate career to examinewhether identified effects are sustained over time. It is hypoth-esized that the education programme and placement experi-ence will result in positive and adaptive changes in anxiety andself efficacy.

OFFERING CHEMOTHERAPY TO PATIENTS WITHADVANCED BREAST CANCER: WHAT INFLUENCES

DOCTORS’ DECISION MAKING?Grunfeld, E.A.a, Ramirez, A.J.a, Richards, M.A.a, Maher,E.J.b, Peach, D.b, Young, T.b, Albery, I.P.aa ICRF Psychosocial Oncology Group, St Thomas’ Hospital,London, b Lynda Jackson Macmillan Centre, Mount VernonHospital, London

Offering chemotherapy to women with advanced breast cancercan be difficult, involving a balance between the potentialbenefits and the likely toxicity. A range of issues inform theoncologist’s contribution to the decision-making process in-cluding beliefs regarding the goals of palliative chemotherapyand numerous tumour and patient-specific factors (e.g. frailty).This study (commissioned by the NHS R&D Cancer Pro-gramme) aimed to elucidate the relative importance assignedto these parameters by different oncologists.Consultant oncologists (n=6) and registrars (n=13) at twoCancer Centres took part in a semi-structured interview usinga systematic approach to assess the value and achievability ofthe goals of palliative chemotherapy. In addition a four-pointscale (‘not at all’ to ‘very important’) to assess the importanceof various factors in decision making. Participants were alsoasked whether they would recommend chemotherapy to ahypothetical patient under various scenarios.Improvement of activity was perceived as the most achievableand valued use of palliative chemotherapy followed by therelief of symptoms, maintenance of hope, prolongation of lifeand delaying the onset of symptoms. Nearly all participants(18/19) rated performance status, pace of the disease and siteof metastases as quite/very important in decision making.There was somewhat less agreement regarding the importanceof other tumour-related factors including the presence of othersymptoms (17/19), site of metastases (16/19), other medicalproblems (16/19) and previous toxicity (15/19). Patient-specificfactors rated as quite/very important (by 18/19 participants)were previous response to chemotherapy, frailty and patientpreferences. Less than half the participants rated patient anxi-ety, depression and social support as quite/very important. Ofleast importance were educational level, language barriers andaccess to transportation.


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There is a general consensus among oncologists regarding thekey goals of palliative chemotherapy. Oncologists also demon-strate good agreement regarding the importance of tumour-related factors although there is less agreement for patient-specific factors.

OUTPATIENT FOLLOW-UP FOR BREASTCANCER PATIENTS

Brown, L.a, Payne, S.a, Royle, G.ba Health Research Unit, Uni6ersity of Southampton, b RoyalSouth Hants Hospital, Southampton

(1) What are the perceptions of women who attend breastclinics following diagnosis and treatment for breast cancertowards their outpatient follow-up? (2) How likely are womento accept non-clinic, patient initiated follow-up with openaccess to a Breast Care Nurse?A structured interview format was employed. Data analysisinvolved frequencies, descriptive statistics and contentanalysis.During the 8-week period (12/8–30/9/98), 470 women at-tended the breast clinics for follow-up appointments; of which100 agreed to be interviewed and 20 declined. All patients wereinterviewed by the same Research Nurse in the clinics. Theywere aged 43–93 years with a mean age of 64 years.The majority (95%) were satisfied with the frequency andcontent of appointments although 37% reported feeling anx-ious beforehand. Sixty-two percent felt relieved after the ap-pointment. When asked which type of follow-up they wouldprefer, 90% wished to continue with clinic follow-up, 8% wereagreeable to accepting patient initiated follow-up, and 2%wished to receive a combination of both types. Few (7%)would accept patient initiated follow-up immediately whereas34% claimed they would never accept it.Routine clinic appointments appear to be associated withfeelings of relief and reassurance. A study of whether patientinitiated follow-up provides similar reassurance is indicated.

A SOCIAL-COGNITIVE TRANSITION MODEL OFNORMAL ADJUSTMENT

Brennan, J.Bristol Oncology Centre

Within psychosocial oncology the term ‘adjustment’ has beenused in many contexts: a patient’s return to their premorbidstate of mental health, their level of psychological morbidity,the end-point of coping with threat of cancer, an adjustmentdisorder. However, it is argued that the term should moreappropriately be reserved for the psychological processes ofadaptation to cancer and its many implications for the individ-ual and their social world.This common sense notion of ‘coming to terms’ will beexplored and the Social-cognitive Transition Model of Adjust-ment will be proposed which is drawn from theoretical andempirical work in both bereavement and traumatic stress.According to this clinically relevant model, a number of coreassumptions by which people live their lives, are commonlyshattered by the cancer diagnosis. Adjustment entails modifi-cations to the assumptive worlds of both the patient and theirprimary social attachments. These cognitive and social transi-tions are experienced as highly stressful but can result inhealthy personal growth, as well as the development of psy-chological disorders which are so commonly reported.

The model suggests why psychological treatments can beeffective, and enables predictions to be made about howpsychological morbidity may be prevented. Finally, the modelhas implications for the way in which ‘quality of life’ isconceptualized.

THE FAMILY RELATIONSHIPS OF ADULTSURVIVORS OF CHILDHOOD CANCER

Hill, J.Uni6ersity of Li6erpool, Child Mental Health Unit

This study was designed to examine psychosocial functioningin young adults who had suffered from ALL or Wilms’Tumour in childhood. One hundred and two cancer survivorsand 102 matched control subjects were interviewed. We havereported previously that there were no differences in rates ofpsychiatric disorder between the two groups, however thecancer survivors showed markedly impaired interpersonalfunctioning and significant limitations in day to day coping. Ameasure of the relationships of the young adults with each oftheir parents was used to test the hypothesis that impairedpsychosocial functioning is mediated via the persistence ofclose/enmeshed relationships with parents. However there wasno evidence that psychosocial functioning was associated withcurrent relationships with parents. Parental encouragement inadolescence was associated with subsequent better psychoso-cial functioning. There were however cancer/control differ-ences in family functioning. Differences in closeness tomothers and fathers were significantly greater among thecancer group than the controls, and this difference was moremarked in female cancer survivors. This was evidenced ininteractions between cancer status and mother and fathercloseness scores in a repeated measures ANOVA, and betweengender and mother and father closeness scores. This suggeststhat a polarization between the strengths of relationships withmothers and fathers that might have occurred at the time ofillness had persisted into adult life. However, in addition,scores for closeness with mothers were significantly inverselycorrelated with age, whilst those relationships with fathersgenerally had low non-significant correlations. This suggestedthat whilst overall the experience of cancer had led to closerrelationships with mothers compared to fathers, also with age,over the age range 19–30 this was changing. This impressionwas confirmed in a further repeated measures ANOVA inwhich there was an interaction between cancer status, age ofsubject and closeness to mother and father (p=0.011). Thus,overall these data suggest that the experience of cancer had ledto alterations in relationships with parents which howeverwere being re-negotiated during the transition to adult life.This is consistent with the finding that these differences didnot contribute to impairment in psychosocial functioning.

SHAME—A MAJOR FACTOR WHICH INHIBITSCANCER PATIENTS FROM ACCESSING GROUP

PSYCHOSOCIAL SUPPORTHarris, R.Walsgra6e Hospitals, Co6entry

Groups for patients with cancer can offer valuable psychoso-cial support but are characterized by poor uptake and highrates of withdrawal. This study was undertaken to explore theexperience of patients who refused membership of an opensupportive-expressive group for patients with leukaemia and


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lymphoma or withdrew after one or two sessions. Semi-struc-tured interviews were conducted with ten such patients and theinterview transcripts analysed using grounded theory. Cancerwas perceived by some interviewees as an injury to the self thatrevealed a core insufficiency. Others were characterized by apremium on control which limited the expression of sponta-neous affect and reduced the capacity for self empathy. Shameand the various defences against shame emerged as major factorsthat may have inhibited the interviewees from joining or fullyengaging with the group. Shame is afforded little mention in theestablished psycho-oncology literature in which anxiety anddepression are described as the principal psychological problemsencountered in patients with cancer. However, it is possible thatshame is of much greater importance than has previously beenrecognized and becomes woven into the subjective experience ofanxiety and depression in complex emotional profiles with otheremotions such as fear and anger.Professionals who provide clinical care and psychosocial sup-port in institutions treating cancer need to understand and besensitive to the pervasive influence of shame. Shame may be amajor factor that inhibits patients from accessing the help theyneed. It is suggested that psychological interventions are struc-tured so as to minimize the risk of inadvertently evoking furthershame. A two-level model of group support for patients withcancer has been devised based on the research findings. It ishoped that this will address some of the difficulties experiencedby patients operating from a shame based life script, many ofwhom are psychologically crippled by this ‘cancer of the soul’.

ARE MEN MISSING FROM CANCER INFORMATIONAND SUPPORT SERVICES?

Williams, E.R.L.a,b, Ramirez, A.J.a,b, Richards, M.A.a, Young,T.c, Maher, E.J.c, Boudioni, M.d, Maguire, P.ea ICRF Psychosocial Oncology Group, St Thomas’ Hospital,London, b Richard Dimbleby Cancer Information and SupportSer6ice, St Thomas’ Hospital, London, c Lynda Jackson Macmil-lan Centre, Mount Vernon Hospital, Northwood, d CancerBACUP, London, e CRC Psychological Medicine Group, ChristieHospital, Manchester

In England and Wales in 1995 the female to male cancerratio was 1:0.97. If gender-specific cancers (prostate, testicu-lar, breast and gynaecological cancers) are removed this be-comes 1:1.37. In the population as a whole the prevalence ofminor psychiatric morbidity is 1.7 times higher in womenthan in men, with the prevalence rates for women being19.4% and those for men 11.5%. Amongst cancer patientsthe prevalence rates are significantly higher both for menand for women, but the increase in men appears to be rela-tively greater. Over the first 2 years after diagnosis of cancerthe prevalence of psychiatric morbidity in women has beenshown to be 33%, compared with 23% in men (p=0.05),giving a female to male ratio of 1:0.71. Similar rates ofpsychiatric morbidity were found in men (49%) and women(51%) in a population of cancer patients with early andadvanced disease (female to male ratio 1:0.96).The gender profile of clients contacting three UK cancerinformation and support services was examined. These in-cluded CancerBACUP and LJMCc (information serviceswere analysed only) and RDCISSb (information, psychologi-cal support and complementary therapies).Only 23–29% of clients contacting all three information ser-vices were men. At RDCISS under-representation of maleswas observed for information services (27%), psychologicalsupport (25%) and complementary therapies(20%). Whengender-specific cancers were excluded males comprised 42%of attenders at the information service, 48% at the psycho-logical support service and 32% at the complementary ther-apy service.Having cancer appears to increase the risk of psychiatricmorbidity in men disproportionately more than women. It isof particular concern therefore that men are only the minor-ity users of the Cancer Information and Support Services.Hitherto research endeavour in relation to psychologicalneeds concerned women particularly those with breast can-cer. A clearer understanding of the Health Related Qualityof Life issues for men is currently being investigated with aprospective longitudinal study.


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abstracts of the 1999 british psychosocial oncology society annual conference

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