Informing and involving cancer patients in their own care

For personal use. Only reproduce with permission from The Lancet Publishing Group.

THE LANCET Oncology Vol 3 October 2002 http://oncology.thelancet.com 629

Doctors have long feared that disclosure of a cancerdiagnosis may harm the patient. However, the vast majorityof cancer patients in more developed countries prefer tohave as much information as possible, regardless ofwhether it is good or bad. Moreover, these patients areoften dissatisfied with the amount and quality ofinformation they receive. Additionally, many patients areunable to participate to the extent that they wish indecisions about their own care, and doctors frequently failto recognise or appreciate the role that their patients preferin decision-making. Various information resources havebeen developed to meet the needs of patients and theirfamilies. This paper discusses the information needs andparticipation preferences of patients with cancer and theconsequences of not meeting these expectations. Thepaper then reviews the types of information resources thathave been developed focusing on their reportedeffectiveness. The review concludes with suggestions forfuture research.

Lancet Oncol 2002; 3: 629–37

Cancer is a source of much stress; as noted by Mills andSullivan, “few words can evoke such an immediate, life-threatening reaction as the word cancer”.1 Patients and theirfamilies have to cope not only with the initial diagnosis ofcancer and an uncertain outcome, but also with unfamiliarprocedures and the presentation of treatment options.Patients are often asked to make choices between differenttherapeutic options, and many wish to be involved indecision-making, regarding their care. To facilitate patientsin making decisions that are based upon medical evidenceand advice, but are compatible with their own values andpreferences, doctors need to provide relevant information.

Informational expectations of patients withcancerMany studies have suggested that patients with cancer believethey are not given enough information. Cassileth andcolleagues found that most cancer patients in the USAwanted detailed information about their cancer, whether thenews was good or bad (figure 1).2 This finding has beenconfirmed in surveys of patients with cancer in the UK,North America, and Australia.3–5 A large study in the UK,involving 2231 patients, found that 87% of participantspreferred to have as much information as possible, good orbad.6 Only 1·9% did not want to know whether they hadcancer and 95% wished to know their chance of cure.Interestingly, there were no differences in specificinformation needs between patients receiving curative

treatment or palliative care and those in remission. Over 90%of patients who took part in the study stated that theyabsolutely needed or would like to have information aboutall possible treatments, all possible side-effects, and how thetreatments work.

In a survey of supportive care needs of newly diagnosedpatients with cancer in Canada, Whelan and colleaguesreported that 85% of patients had informational needs.7

Other researchers from the UK and USA have suggested thatthe great majority of patients wish to receive as muchinformation as possible.3

Mills and Sullivan listed six functions of information forpatients: to gain control, to reduce anxiety, to improvecompliance, to create realistic expectations, to promote self-care and participation, and to generate feelings of safety andsecurity.1 There is some evidence that provision of moreinformation can have beneficial effects on compliance,8

patients’ satisfaction,9 clinical outcomes,10,11 and quality oflife.12,13

Several studies have attempted to identify predictors ofinformational need.1,14 Possible factors include the age, sex,educational attainment of the patient, type of cancer, stage of

ReviewPatients’ involvement in cancer care

MJ is a medical oncologist at the Ludwig Institute for CancerResearch, Australia. MHNT is an academic cancer physician at theDepartment of Cancer Medicine, University of Sydney, Australia.

Correspondence: Dr Michael Jefford, Ludwig Institute for CancerResearch, Austin and Repatriation Medical Centre, Heidelberg,Victoria 3084, Australia. Tel: +61 3 9457 6933. Fax: +61 3 9457 6698. Email: [email protected]

Informing and involving cancer patients in theirown care

Michael Jefford and Martin H N Tattersall

Figure 1. Patients often lack total recollection of the consultation withtheir doctor if it contained bad news.


THE LANCET Oncology Vol 3 October 2002 http://oncology.thelancet.com630

disease, type of treatment, and time since diagnosis. Factorslikely to influence readiness for information may includepsychological adjustment and the behaviour of healthprofessionals.15 Information should be individualised tomatch the educational background, cultural perspectives, andgeneral degree of comprehension of the patient. Healthcareproviders should find out the degree to which patients wishto be informed and to what extent they may want toparticipate in treatment decisions.15 Patients can also havechanging preferences for information and involvementthroughout their experience of living with cancer, thereforetheir preferences should be sought at each consultation.16

Healthcare practitioners also need to be aware thatpatients are often unable to recall a great deal of what they aretold during consultations. When information is particularlydistressing, for example when bad news is unexpected, somepatients are unable to absorb any further information.17 As aconsequence, patients with cancer can perceive a lack ofinformation, which can result in, or exacerbate, feelings ofuncertainty, anxiety, and depression.18

Effects of too little informationClinicians tend to underestimate the amount of informationthat patients would like to receive.19,20 Patients who feel poorlyinformed are not only dissatisfied with their care, but alsomay have reduced wellbeing.18 Among women with earlybreast cancer, patients who thought they had been poorlyinformed were twice as likely to be depressed or anxious, orboth, compared with those who thought that they had beenadequately informed.18

Lack of information can cause distress for patients andtheir families. Gamble reported that patients who receivedlittle or no information about side-effects of treatment, orwho were expecting only minor side-effects, suffered greateranxiety.21 Lack of information can also lead to increaseduncertainty, anxiety, distress, and dissatisfaction, and cannegatively influence patients’ treatment decisions.20 Pruynand colleagues found that patients who believed that they hadreceived inadequate information were more likely to pursuealternative therapies, in that case the Moerman diet.22

Participation in decision-makingDoctors appear to be moving toward a policy of greaterdisclosure of information about cancer diagnosis.23 In 1961,90% of US doctors indicated a preference for not telling apatient with cancer their diagnosis, whereas in 1979, 97%indicated a preference for revealing a diagnosis of cancer.

Meanwhile, there has been a shift toward increasedparticipation by patients in their own medical care.24

Increasingly, patients are health consumers and want to beactive participants in medical decision-making. Patients tendto leave doctors who fail to involve them in decisions.25

Substantial difficulties are created for health-careproviders in many countries who must respond to thegrowing expectations of patients wanting to participate inmedical-care decisions. There are many reasons for theincreased emphasis on involvement of patients. As com-munities have become better educated and informationabout healthcare has become more accessible, a fundamental

shift in society’s expectations of clinicians has occurred. Callsfor increased accountability have also come from withingovernment and professional ranks, in efforts to standardiseclinical practice according to best medical evidence, and toimprove healthcare outcomes. Moreover, the quality ofinformation provided to patients has improved with pressurefrom consumer advocacy groups and patients now morefrequently participate in treatment decisions. There iswidespread concern for individual autonomy, individualhuman rights, and a growing awareness of the importance ofinvolving patients in making decisions about their care,because this can contribute to better-quality decisions, andperhaps improve health outcomes.

Justice Kirby of the High Court of Australia stated: “It isnow by no means uncommon to find amongst lay people ageneral appreciation of health-care issues, which wascertainly absent in earlier generations. To treat such patientswith condescension and paternalism not only creates afeeling of resentment, it also minimises the opportunities forinsightful discussion.”26 In an editorial in the New EnglandJournal of Medicine, Kassirer concluded, “the sick sufferenough. We must avoid adding insult to injury by denyingthem a proper role in determining their future.”27

Yet patients cannot express informed preferences abouttheir care, or about whether and how they want to participatein care decisions unless they are given sufficient andappropriate information and encouraged to ask questions.28

Indeed, a common complaint of patients is that they are notencouraged to make informed decisions, nor are theyprovided with sufficient information to do so.29

There are often many therapeutic options for treatingdifferent cancers. More than 20 years ago, Cassileth andcolleagues showed that, across all age-groups, most patientswith cancer prefer to participate in treatment decisions.2

However, several researchers have suggested that patients arefrequently unable to assume their desired role when makingdecisions about treatment. Degner and colleagues found thatonly 42% of women achieved their preferred degree ofparticipation in treatment decision-making for initialtreatment of breast cancer. 15% of women were pushed intobeing more active in decision-making than they desired.19

Other studies have also reported wide variation in the extentto which patients wish to participate in decision-making.3,5,30,31

Several studies have found that patients with cancer whoachieve their desired degree of participation during decision-making are in the minority.5,19 However, there has only beenone prospective study on the preferred and actual role ofpatients with cancer in their treatment decisions.32 A linkbetween preferred and perceived roles was found for just overa third of patients, with 29% more active than they would likeand 37% participating to a lesser degree than they wanted.Patients whose degree of participation was less than desiredwanted more information about treatment options and side-effects, needed more assurance, and wanted moreopportunities to talk about their fears. They were alsosubstantially less satisfied with the consultation and moreanxious immediately afterwards. Irrespective of preference,patients who had a shared role in decision-making were mostsatisfied with the consultation with their doctor. They were

Review Patients’ involvement in cancer care



also more satisfied with information about treatments andemotional support. Patients who reported that treatmentdecisions were made by their doctor alone or by themselvesalone were least satisfied. The data showed that patients whoachieved less participation in treatment decisions thandesired had negative psychological sequelae, whereas patientswho achieved greater participation than desired had no suchill effects. Similarly, patients who thought that either theirdoctor or themselves were entirely responsible for decision-making were less satisfied with the consultation andinformation they received, despite their initial preference.This finding suggests that although an individualisedapproach may be ideal, offering greater rather than lesserparticipation in decision-making may be the best overallstrategy.

In the same study, patients’ reports of their actual extentof participation in the decision-making process wereassociated with clinician behaviour, but not their own. Thisdifference suggests that the consultation itself and inparticular the behaviour of the doctor may be pivotal inproducing the discrepancy between preferred and actual rolesin treatment decisions. The number of patients who felt theyhad been less involved in decision-making than they wouldhave liked varied among oncologists, and factors associatedwith the doctor were important for a group of patients whosaw one particular doctor. Training clinicians to be aware ofthe discrepancies between patients’ preferences andexperiences may be useful. One possible technique would beto inform clinicians before a consulataion of how involvedindividual patients would like to be in treatment decisionsand how much information they require.

These findings highlight the advantages of the shareddecision-making model. The research also shows that failureto achieve a preferred decision-making role may adverselyaffect patients’ satisfaction with their treatment andemotional wellbeing. Doctors should be encouraged to asktheir patients about how much information they would likeand how much they expect and want to be involved indecision-making. Several studies have suggested that doctorsare often unable to predict their patients’ preferred role indecision-making.32,33 Interestingly, patients prefer to be toldall information about their treatment, whatever theirpreferred decision-making role.3,5,30,31

Patients who are more involved in treatment decisions, orsimply offered choices, can have better physical andpsychological outcomes than those with less involvement.34,35

Studies have suggested a link between involvement indecision-making and better psychological adjustment andsatisfaction.4,13,32,36 Greater participation by patients may alsobe associated with better health outcomes measuredphysiologically (blood pressure or blood sugar control),behaviourally (functional status), or subjectively (overallhealth status).36

Improving participation by patients One method proposed to allow patients to have more controlover the flow of information during a consultation is toencourage them to ask more questions. Patients who activelyparticipate in consultations by asking questions of their

doctor are able to change the focus of the consultation andcontrol the duration and amount of information provided.25

Street found that the frequency with which patients askedquestions was significantly related to the amount ofinformation they received about general medical matters andin particular about diagnostic and treatment issues.37

Attempts to encourage patients to ask more questionshave had limited success.4,38,39 Roter and colleagues evaluated ashort coaching session by a psychologist, which encouragedgeneral-practice patients to ask questions.38 Although patientsdid ask more questions, the intervention required substantialresources and there was an increase in negative exchangesbetween the doctor and patient. Butow and colleagues gave aquestion prompt sheet to cancer patients before their initialconsultation with an oncologist.4 The prompt sheet increasedthe number of questions about prognosis, although the totalnumber of questions asked was unaffected. In a similar studyBrown and colleagues investigated whether a combination ofthe previous approaches (coaching and a prompt sheet)would produce better results.39 The question prompt sheetsignificantly increased the number of general and specificquestions asked by patients with cancer about prognosis andtests, but coaching had no additional impact.

Another study by Brown and colleagues compared twomethods of encouraging patients with cancer to ask questionsabout their treatment.40 One group of patients were providedwith a question prompt sheet before their initial consultationwith their oncologist. A second group of patients were alsogiven the question prompt sheet, but its use was activelyendorsed and reviewed by their oncologist. Patients who weregiven a prompt sheet asked more questions about prognosisthan did controls, and oncologists gave significantly moreprognostic information to these patients; the prompt sheetmade consultations longer and increased patients’ anxiety.However, when oncologists specifically addressed the promptsheet, anxiety was significantly lower, consultation durationwas shorter and recall was significantly better. Participationby patients can also be improved by the use of variouscommunication and counselling techniques.10,41

Misunderstandings by patientsSeveral researchers have noted that patients frequently showdiverse misunderstandings about their illness, its prognosis,and treatment.42–45 Mackillop and colleagues found that athird of patients with metastatic disease believed it waslocalised and a third of those receiving palliative treatmentthought that treatment was curative in intent.42 Only 37%accurately cited the probability that treatment would curetheir illness, with more than half overestimating their chancesof cure. Other studies have confirmed the commonness ofmisunderstanding by patients with cancer and suggested thatmisunderstanding negatively influences treatment outcome.

There are several explanations for misunderstanding bypatients.46 For example, doctors may withhold information orfail to communicate it clearly. A study in which doctors wereasked to report the information they had given to patientswith breast cancer found that less information was disclosedto patients who had fewer than 6 years of formal education,were aged over 50 years, or who had a poor prognosis than to




more educated or younger patients, or those with a betteroutlook.47 In a study of audiotaped initial consultationsbetween a medical oncologist and patients with cancer, theoncologist was more likely to discuss prognostic informationwith female than with male patients and with patients whohad metastatic disease than those without such disease.48

Patients’ ratings of the clarity of information received werepredictive of their understanding.46

Rimer and colleagues found that clinicians, on average,told patients less than 70% of the information relevant totheir disease and treatment, and patients recalled less than40% of what they were told.43 In a study on adjuvant therapyof breast cancer, Siminoff and colleagues found that 60% ofpatients overestimated their chance of cure andunderestimated the possible severity of common side-effects.44

Weeks and colleagues studied 917 terminally-ill patientswith cancer and found that patients’ estimates of theirprognosis strongly predicted their preferences for life-extending over comfort care.45 The researchers suggested thatbetter communication between physician and patient mayallow patients to make treatment decisions that are more

consonant with their values. Gattellariand colleagues also found that manypatients with incurable cancer areinadequately informed about theirprognosis and alternatives to anti-cancer treatment.49 Furthermore, manypatients do not understand thelanguage frequently used to com-municate prognosis in early breastcancer.50

The challenge that oncologists faceis how to communicate information in a manner that is both responsive to a patient’s emotional status and sufficiently informative to allowdecision-making to take place.

Communication of informationto patientsOng and colleagues claimed thatcommunication in medical care servesthree major purposes: to create a goodinterpersonal relationship, to allow theexchange of information, and tofacilitate medical decision-making.51

These aims are mainly achievedthrough face-to-face communication,both verbal and non-verbal. Mostpatients with cancer suggest that theironcologists are their most valuedsource of information.1 Little effort hasbeen made to address patients’perceptions of information obtainedfrom other professionals. Nurses andother staff may also be importantsources of information. Having otherstaff (for example a breast-care nurse)

present when information is given in an oncologyconsultation can permit further discussion, clarification, andreinforcement of information for patients. Such an approachalso ensures that patients receive consistent information.However, as shown by the above discussions, many patientsare dissatisfied with the information that they receive.Patients may be unable to absorb all that is discussed during aconsultation. In addition to better communication andcounselling skills by oncologists,51 patients need additionalresources to satisfy information needs and to achieve greaterparticipation in their care.

Guidelines for the development of information Many information resources are lacking in several areasincluding omission of relevant data , failure to give abalanced view of the effectiveness of different treatments,failure to include uncertainties, and rarely promoting aparticipative approach to decision-making.52 Several groupshave produced information-development guidelines (figure 2and panel 1) including the National Health and MedicalResearch Council in Australia and the Centre for HealthInformation Quality (figure 3) in the UK.


Initial planningConsider• The purpose of the information• The target audience• Information needs of minority groups• The most appropriate medium• How this resource can be used within a wider programme promoting shared decision-making• Other resources available

Review the clinical evidenceUsing systematic reviews where possible

Patientinvolvement

PatientinvolvementPatient

involvement

Wide rangeof clinicalexperts

Wide rangeof clinicalexperts

Feasibility of • Distribution • Update

Cost

Develop astrategy fordistribution

Review andevaluate initial

resource

Publiciseand

distribute

Assesseffectiveness

Periodic review and updateGenerally

patient-focusedoutcomes

Figure 2. A checklist for producing patient information resources.

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There are also methods of assessing the quality of writteninformation, such as the DISCERN questionnaire.53 TheDISCERN questionnaire consists of a set of quality criteriafor written consumer health information. It does not,however, assess the scientific quality or accuracy of theevidence on which a publication is based or the effectivenessor accessibility of its presentation. The DISCERNquestionnaire is also available on the internet (figure 4). Inthe UK, Macmillan Cancer Relief and the Centre for HealthInformation Quality have produced a directory ofinformation resources available for people with cancer(http://www.hfht.org/macmillan/intro.htm). It is intendedprimarily for use by staff working in cancer treatment andcare. The directory lists information available and rates it byuse of both the DISCERN questionnaire and the Flesch score,a widely used measure of readability. Oncologists and otherhealth-care professionals should review the informationresources available for their patients, both for their content(thorough and based on high-quality evidence), quality ofproduction, and readability.

Information available to patientsVarious methods have been used to facilitate the passage ofinformation to patients with cancer. These include writteninformation, telephone helplines, teaching and counsellingservices, audiovisual aids, such as audiotapes and videotapes,and multimedia resources such as CD-ROM and theinternet. Some methods can be quite complex including, forexample, combinations of printed information andcounselling. Thus, to attribute changes to any one part of theapproach is difficult. McPherson and colleagues recentlyreviewed randomised controlled trials of information-givinginterventions.54 Only ten studies were identified and therewas much variation between the populations studied,interventions undertaken, and observed outcomes; thus, nogeneral recommendations can be made from this overview.

Written informationMcPherson and colleagues found that written informationwas a feature of most of the methods evaluated and it

increased recall and knowledge related to the informationgiven.54 This finding is consistent with that of Devine andWestlake.55

Butow and colleagues assessed five commonly usedcancer-information booklets and found that greater patientsatisfaction was related to ease of readability of theinformation.56 Cooley and colleagues found that only 27% ofnon-hospitalised patients with cancer might be expected tounderstand all written information available to them.57 In areview of literacy, comprehension, and informed consent,Raich and co-workers concluded that reading ability can beassessed with many common word-processing computerprograms and an appropriate reading level should be usedfor information for patients, including consent forms. 58

Mohide and colleagues undertook a randomised studycomparing two versions of a new patients’ information pack(standard and mini) with standard care.59 Most patientsfound the packs useful and easy to understand. However,there did not appear to be any effect on psychological distresswhen information packs were given to the patients beforetheir first visit and no differences in acceptability were foundbetween the two types of information package, thoughproduction and distribution costs of the mini pack were lessthan half of those of the standard pack.

Whelan and colleagues assessed the effect of a patient-filefolder in improving the dissemination of written informationmaterials in a before and after study design.60 They found thatpatients who received the folder received more informationpamphlets than those without the folder and theirsatisfaction was better.

Written summaries and audiotapes of consultationsA systematic review of the effect of giving tape recordings orwritten summaries of consultations to patients with canceridentified eight randomised studies, but the quality of thestudies was generally poor.61 The results consistently showedthat most people who received summaries or audiotapesvalued them. Across seven studies that provided such data,between 83% and 96% of people receiving the tapes foundthem useful. One study found that people who received badnews found a summary letter significantly more useful than


Panel 1. A checklist for the content of patient informationresources

1 Use patients’ questions as the starting point2 Ensure the common concerns and misconceptions are

addressed3 Refer to all relevant treatment or management options4 Include honest information about benefits and risks5 Include quantitative information where possible6 Include checklists and questions to ask the doctor7 Include sources of further information8 Use non-alarmist, non-patronising language in active rather

than passive voice9 Design should be structured and concise with good

illustrations10 Be explicit about authorship and sponsorship11 Include references to sources and strength of evidence12 Include the publication date

Reproduced with modifications from Coulter A, Entwhistle V, Gilbert D. Sharingdecisions with patients: is the information good enough? BMJ 1999; 318: 318–22 withpermission of the BMJ Publishing Group.

Figure 3. Home page of the UK Centre for Health Information Quality(http://www.hfht.org/chiq/).



people who received good news. A study reported byTattersall and colleagues found that the most significantpredictors of satisfaction with both tape and letter wereanxiety and the patient’s rating of the consultation ascontaining good or bad news.31 The more anxious thepatients were and the worse they considered the news, theless they wanted to have a reminder of their consultation.Seven studies assessed recall of information given during theconsultation. Four studies showed improved recall, twoshowed no effect, and in one the control group recalled agreater percentage of facts, though this group was presentedwith fewer facts of interest. The systematic review also notedthat of four studies assessing satisfaction, two found thatpatients were more satisfied after receiving the consultationrecord. One study showed that tapes were preferred toletters, and another showed no difference between tape andcontrol groups. There was a suggestion from two studies thatpatients exposed to the intervention may assume a moreactive, participatory role. Six of the eight studies assessedanxiety and depression. None reported significantdifferences. One study reported mixed results becausepatients with a poorer prognosis had more morbid thoughtsat follow-up than patients with a better prognosis.

A further study reported by Ong and colleagues alsofound that patients receiving a tape of their initialconsultation were more satisfied and recalled moreinformation than those who did not receive a tape, butquality of life was unaffected.62

Compared with individual tapes of consultations, generalinformation tapes seem to inhibit recall of information fromthe consultation,63 suggesting that information providedshould be relevant, and ideally individualised, to aidunderstanding and recall.

Patients can receive copies of letters sent between theirreferring doctor and oncologist or a separate letter. Somedoctors dictate letters in the presence of their patients so thatthey can review the information that is being transferred tothe referring doctor. We emphasise that this approach alonedoes not ensure patients’ understanding or recall, nor does it

ensure that patients leave the consultation feeling adequatelyinformed.

Despite widespread support for provision ofindividualised letters or audiotapes to patients,64 mostdoctors remain opposed to offering patients thesepersonalised information aids.65 McConnell and colleagues,however, have suggested that practice and perspectives maybe changing.65

Audiovisual aidsIn 1985, Rainey reported the effect of preparatory educationfor patients with cancer who were undergoing radiotherapy.66

30 patients received standard information and aninformation booklet. Another 30 patients were shown a 12-minute slide-tape programme describing practicalinformation about treatment, correcting commonmisconceptions, and encouraging questions. Compared withthe standard cohort, patients shown the slide-tapeprogramme had better treatment-related knowledge at thebeginning of treatment and showed less emotional distress atthe end of treatment.

VideotapesThomas and colleagues did a study in patients about to startchemotherapy or radiotherapy, randomly assigning patientsto receive standard written-information booklets with orwithout a video cassette.67 They found that patients who alsoviewed the videotape were substantially more satisfied thanthose who received only the written information. Patientswho watched the video had lower degrees of anxiety duringtreatment than at the initial pretreatment assessment,whereas no difference was seen in the control group.Participants who watched the video showed a decline indepression scores during treatment, whereas the controlgroup showed an increase in depression scores. However, thestudy did not report outcomes beyond 3 weeks, andinformation given in the video was not necessarily includedin written information so the effect of the video mediumitself cannot be assessed.

A similar study found that information given byvideotape in addition to written information did not reducepatients’ anxiety before they began radiotherapy. 68

Computer-based resourcesIn a study designed to compare information booklets alone(control) with computer-based information, one group weregiven computer-based general information and anothergroup were given personalised computer-based informationderived from their medical record.69 More of the latter than ofthe former group learnt new information, thought theinformation was relevant, used the computer again, andshowed their printouts to others. More of the general-information group than of the personalised group wereanxious after 3 months. The researchers suggested that aselectronic medical records become more widespread,personalised computer-based information will beincreasingly available and affordable.

Computer touch-screen technology has been used bothto provide patients with information specific to their own


Figure 4. Home page of the DISCERN online questionnaire(http://www.discern.org.uk/).



needs and to provide doctors with completed questionnaires.Use of this type of information delivery is likely to increaseand to be further explored.

The internet has the potential to educate and informpatients with cancer but they may find assessment of whetherinformation is credible and applicable difficult or evenimpossible. Several rating guides have been developed in anattempt to direct health consumers to high-quality websites,which provide health information. Jadad and Gagliardiidentified 47 rating guides—all considered to be incompletelydeveloped. They concluded that whether these guidesmeasure what they claim to measure, and whether they domore harm than good is uncertain.70 Because the internet hascreated an unregulated information explosion, patients’information requirements have to be met through acombination of verbal communication and supplementaryresources. Patients should be encouraged to discussinformation that they obtain from the internet with theironcologists. Panel 2 lists some recommended websites forpatients with cancer. The International Union AgainstCancer (UICC) website has a list of member organisationsthat may help oncologists to discover suitable web-basedresources for their patients (http://www.uicc.org/organization/membership/directory/memb.shtml).

Telephone helplines and support groupsMany patient support groups and cancer informationtelephone services enable patients to seek emotional supportin addition to specific information.71 However, there havebeen no published randomised studies to assess the effect ofthese information sources. Both telephone services andsupport groups permit a personal interaction, distinct fromthe doctor–patient relationship.

Decision aidsThe interventions described above are educational; they aimto provide patients with information, advice, and support fortreatments and treatment decisions. By contrast, decision aidsprovide information to support an informed choice wheremore than one treatment option is available.72 They areintended to help patients and their doctors participate within

a model of shared decision-making that enables a joint decision to be made, concordant with the individual values and needs of thepatient. Various media are used—written information, oral presentationsof information combined with writtenand visual materials, video pro-grammes, computer-based programs,and interpersonal counselling.

Two overviews of decision aidshave been published. The firstidentified ten controlled studies, whichincluded patients who were actuallyfacing the decision for which the aidhad been developed.72 Of these tenstudies, only one involved patientswith cancer.41 Patients with breast

cancer of stage I or II were randomly assigned to receiveeither an interactive multimedia computer programme or abrochure describing local treatment for their cancer.Outcomes included knowledge, behavioural involvement inconsultation, and self-reported involvement and control indecision-making. No differences were found between thegroups, though patients exposed to the multimediaprogramme tended to learn more than those without suchexposure.

The second overview reviewed 17 studies and found thatcompared with controls, decision aids resulted in higherknowledge scores, lower decisional conflict scores, moreactive participation of patients, and no differences in anxiety.Satisfaction with decisions or with the decision-makingprocess was unaffected.73

Molenaar and colleagues assessed the effect of aninteractive CD-ROM on treatment decision, satisfaction, andquality of life in women with early breast cancercontemplating a choice between breast-conserving therapyand mastectomy.74 No effect on treatment decision wasfound, but patients using the CD-ROM were more satisfiedwith their decision and with general information than thosewho did not use it. At 9 months follow-up, CD-ROMpatients were more satisfied with the decision-makingprocess and communication than patients not using the CD-ROM and reported better physical functioning, less pain, andfewer arm symptoms.

Several other decision aids have been developed for theoncology setting, and several decision boards have beendescribed,75 but no randomised studies have yet beenpublished. Further studies are needed to assess the effect ofdecision aids on health and quality of life, especially withlong-term follow-up.

Future directionsAlmost all of the published work to date is from developedcountries and describes the informational needs andparticipation preferences of English-speaking people. Theneeds and preferences of non-English-speaking people andthose from other societies and cultures may be quitedifferent. This is an important area to explore. Oncologists


Panel 2. Recommended websites for patients with cancer

UK–based

Cancer BACUP http://www.cancerbacup.org.uk/

Cancer Help UK http://www.cancerhelp.org.uk/

Cancernet http://www.cancernet.co.uk/

Cancerlink http://www.cancerlink.org/

US–based

People living with cancer (an ASCO website) http://www.plwc.org/

National Cancer Institute cancer information website http://www.cancer.gov/cancer_information/

OncoLink University of Pennsylvania Cancer Center http://www.oncolink.com/

Quackwatch http://www.quackwatch.com/

Australian–based

The Cancer Council Australia http://www.cancer.org.au/

The International Union Against Cancer (Union Internationale Contre le Cancer, UICC) website has a listing of memberorganisations which may assist oncologists to locate suitable local web-based resources for their patients(http://www.uicc.org/organization/membership/directory/memb.shtml).



may have much greater difficulty meeting the expectations ofpatients from other cultures.

Despite the limitations discussed, studies so far haveshown that patients value several different methods ofacquiring information. These methods result in improvedrecall, understanding, and satisfaction. However, there areseveral areas that the studies have not addressed.61,72 Fewstudies have addressed the effect of these aids on quality oflife, physical health status, or survival—important endpointsin any interventional study in oncology. Similarly, fewstudies have assessed the cost-effectiveness or cost-utilitybenefit of these methods.

The effect of information may depend on the quality ofthe method of provision. Studies should describe the processof development of information, ideally acknowledging allfeatures thought to be necessary (panel 1 and figure 2).Information resources should also be based on high-qualityevidence.

Some populations of patients seem to benefit more fromparticular interventions than from other approaches but theactual benefits and harms patients experience need to beexplored. Most studies have reported short follow-up.Although the specific effects of a single informationalresource may be difficult to distinguish from otherinterventions, the long-term effects of these resources shouldbe assessed.

The influence of information should be assessedthroughout different phases of care, including diagnosis,treatment, cessation of treatment, relapse, advanced disease,and palliative or supportive care.61 The relative effectivenessof doctors, cancer nurse specialists, and other healthprofessionals in providing information should also bedetermined.

Also, the effective implementation of these tools intopractice needs to be studied. In the case of audiotaping ofconsultations, many doctors appear to support the idea, yetfew actually provide their patients with these aids.64, 65

Conclusion Most patients with cancer have great informational needs.Furthermore, many patients wish to participate in decisionsabout their own care. Improved communication skills on thepart of healthcare providers, especially doctors and nurses,are likely to enable a more satisfying relationship for patients.Additionally, many information aids are effective atconveying information to patients with cancer. Theseinterventions do not need to be complex and expensive to besuccessful. Further research is needed to compare thedifferent approaches to meeting the information needs and


Search strategy and selection criteriaPublished data for this review were identified by searches ofMedline and Cochrane databases by use of the Mesh terms“patient education” or “patient participation” with “neoplasms”and either “decision making”, “videotape recording”, “taperecording”, “CD-ROM”, “Internet”, or non-Mesh terms such as“prompt sheet”, “telephone counselling”, or “support group”.Only papers published in English were included. Referencesfrom relevant articles were also included.

participation preferences of patients with cancer, and toassess how information can be better disseminated.

Conflict of interestNone declared.

References1 Mills ME, Sullivan K. The importance of information giving for

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Informing and involving cancer patients in their own care

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