Evaluating patient education materials about radiation therapy

8
Patient Education and Counseling 52 (2004) 325–332 Evaluating patient education materials about radiation therapy Jeff Dunn a,b,, Suzanne K. Steginga a,c , Pauline Rose d , Jenn Scott c , Roger Allison d a Community Services, Queensland Cancer Fund, Spring Hill, Qld 4006, Australia b School of Population Health and School of Social Science, University of Queensland, Brisbane, Qld 4067, Australia c School of Applied Psychology, Griffith University, Brisbane, Qld 4111, Australia d Division of Oncology, Royal Brisbane Hospital, Brisbane, Qld 4029, Australia Received 11 September 2002; received in revised form 16 January 2003; accepted 19 January 2003 Abstract Targeted treatment education for cancer patients has the potential to promote adjustment through assisting patients to participate in treatment decision making, comply with treatment regimens and cope more effectively with treatment side effects. A quasi-experimental longitudinal pre-test post-test and follow-up design was used to assess the effect of a patient education video about radiation therapy on patients’ psychological distress, knowledge about radiation therapy, self-efficacy about coping with treatment and physical symptoms. Patients with head and neck (n = 26) and breast cancer (n = 66) were recruited into the study and allocated into control and intervention groups. No significant differences were found between the control and intervention groups on any of the outcome variables. However, patients in the intervention group reported high levels of satisfaction with the video and all reported that they would recommend the video to other patients preparing for radiation therapy. As well, 90% of patients in the intervention group reported that some or all of the information in the video was new to them. Education materials that have excellent face validity and that are well received by patients may fail to produce significant change using standard controlled study designs. Future research in this area may need to consider alternative paradigms for evaluating the helpfulness of such materials. © 2003 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Radiation therapy; Patient education video 1. Introduction The diagnosis and subsequent treatment of cancer is a major life stress that may be followed by a range of psycho- logical, social, physical and spiritual difficulties [1–5]. Fur- ther, the overall experience of cancer can be seen as a series of stressful episodes as the person moves from diagnosis, to treatment and rehabilitation or palliation [6]. Supportive care that is targeted to the needs of each specific phase of the illness experience is essential to assist people with can- cer to cope with this experience. In particular, targeted in- formational support is a key aspect of supportive care that may assist patients with cancer to participate effectively in treatment decisions and in their own self-care, as well as to comply with necessary treatments [7,8]. Informational support is particularly critical in the case of therapies such as radiation therapy, that frequently are dif- Corresponding author. Present address: Queensland Cancer Fund, P.O. Box 201, Spring Hill, Qld 4004, Australia. Tel.: +61-7-3258-2260; fax: +61-7-3257-1306. E-mail address: [email protected] (J. Dunn). ficult for lay people to understand [9,10]. However, studies suggest that many patients are dissatisfied with the informa- tion they receive in preparation for treatment [8]. As well, health professionals may overestimate patients’ understand- ing about treatments and underestimate their preference for information provision. With regard to radiation therapy in particular, the lay community may confuse radiation ther- apy with chemotherapy and have overly negative perceptions of the side effects associated with radiation therapy [11]. In addition, patients’ negative mood is highest before treat- ment commences, indicating that psychological preparation for radiation therapy is important [12]. Thus, the develop- ment and evaluation of targeted informational resources for patients preparing for radiation therapy is a priority. The most common form of informational support inter- vention involves the presentation of written materials. How- ever, many of these resources have poor readability, thereby reducing their effectiveness [13]. Educational videos may be a superior form of intervention for the delivery of informa- tion to patients in general, but in particular for those with poor literacy. First, videos provide a multi-channel message through non-verbal and representational communication. A 0738-3991/$ – see front matter © 2003 Elsevier Science Ireland Ltd. All rights reserved. doi:10.1016/S0738-3991(03)00108-3

Transcript of Evaluating patient education materials about radiation therapy

Page 1: Evaluating patient education materials about radiation therapy

Patient Education and Counseling 52 (2004) 325–332

Evaluating patient education materials about radiation therapy

Jeff Dunna,b,∗, Suzanne K. Stegingaa,c, Pauline Rosed, Jenn Scottc, Roger Allisond

a Community Services, Queensland Cancer Fund, Spring Hill, Qld 4006, Australiab School of Population Health and School of Social Science, University of Queensland, Brisbane, Qld 4067, Australia

c School of Applied Psychology, Griffith University, Brisbane, Qld 4111, Australiad Division of Oncology, Royal Brisbane Hospital, Brisbane, Qld 4029, Australia

Received 11 September 2002; received in revised form 16 January 2003; accepted 19 January 2003

Abstract

Targeted treatment education for cancer patients has the potential to promote adjustment through assisting patients to participate intreatment decision making, comply with treatment regimens and cope more effectively with treatment side effects. A quasi-experimentallongitudinal pre-test post-test and follow-up design was used to assess the effect of a patient education video about radiation therapy onpatients’ psychological distress, knowledge about radiation therapy, self-efficacy about coping with treatment and physical symptoms.Patients with head and neck(n = 26) and breast cancer(n = 66) were recruited into the study and allocated into control and interventiongroups. No significant differences were found between the control and intervention groups on any of the outcome variables. However,patients in the intervention group reported high levels of satisfaction with the video and all reported that they would recommend thevideo to other patients preparing for radiation therapy. As well, 90% of patients in the intervention group reported that some or all of theinformation in the video was new to them. Education materials that have excellent face validity and that are well received by patients mayfail to produce significant change using standard controlled study designs. Future research in this area may need to consider alternativeparadigms for evaluating the helpfulness of such materials.© 2003 Elsevier Science Ireland Ltd. All rights reserved.

Keywords: Radiation therapy; Patient education video

1. Introduction

The diagnosis and subsequent treatment of cancer is amajor life stress that may be followed by a range of psycho-logical, social, physical and spiritual difficulties[1–5]. Fur-ther, the overall experience of cancer can be seen as a seriesof stressful episodes as the person moves from diagnosis,to treatment and rehabilitation or palliation[6]. Supportivecare that is targeted to the needs of each specific phase ofthe illness experience is essential to assist people with can-cer to cope with this experience. In particular, targeted in-formational support is a key aspect of supportive care thatmay assist patients with cancer to participate effectively intreatment decisions and in their own self-care, as well as tocomply with necessary treatments[7,8].

Informational support is particularly critical in the case oftherapies such as radiation therapy, that frequently are dif-

∗ Corresponding author. Present address: Queensland Cancer Fund, P.O.Box 201, Spring Hill, Qld 4004, Australia. Tel.:+61-7-3258-2260; fax:+61-7-3257-1306.E-mail address: [email protected] (J. Dunn).

ficult for lay people to understand[9,10]. However, studiessuggest that many patients are dissatisfied with the informa-tion they receive in preparation for treatment[8]. As well,health professionals may overestimate patients’ understand-ing about treatments and underestimate their preference forinformation provision. With regard to radiation therapy inparticular, the lay community may confuse radiation ther-apy with chemotherapy and have overly negative perceptionsof the side effects associated with radiation therapy[11].In addition, patients’ negative mood is highest before treat-ment commences, indicating that psychological preparationfor radiation therapy is important[12]. Thus, the develop-ment and evaluation of targeted informational resources forpatients preparing for radiation therapy is a priority.

The most common form of informational support inter-vention involves the presentation of written materials. How-ever, many of these resources have poor readability, therebyreducing their effectiveness[13]. Educational videos may bea superior form of intervention for the delivery of informa-tion to patients in general, but in particular for those withpoor literacy. First, videos provide a multi-channel messagethrough non-verbal and representational communication. A

0738-3991/$ – see front matter © 2003 Elsevier Science Ireland Ltd. All rights reserved.doi:10.1016/S0738-3991(03)00108-3

Page 2: Evaluating patient education materials about radiation therapy

326 J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332

further advantage is that educational videos are time efficientin the outpatient setting, are easily incorporated into busyhealth care settings, and can be taken home by the patient forrepeat viewings[14,15]. This means that the learning processpotentially continues outside the clinic setting. However, toensure maximum effectiveness of the video presentation forinformation delivery, Thomas et al.[8] note that the qualityof video production is important. Thus, the use of profes-sional film producers improves quality so that it is both ac-ceptable to patients and effective as an educational resource.

Few studies have empirically evaluated the effectivenessof strategies to improve treatment knowledge and adjustmentto radiation therapy, and those that have been conductedhave produced inconclusive results. For example, Johnsonet al. [16] found that an audiotape educational interventionreduced disruption to usual activities, but was not effective inimproving mood. Similarly, Hagopian[17] evaluated an au-diotape intervention using only a post-test design and foundimproved knowledge about radiation therapy, but no differ-ence in side effects. Finally, Poroch[18] found a decreasein anxiety as a result of a structured teaching interventionabout radiation therapy but actual treatment knowledge wasnot measured. Thus, it is unclear whether the supportivecounselling or educational component of the interventionproduced this benefit.

As well, while researchers have assessed the effect of ed-ucational interventions on outcome variables such as knowl-edge and psychological distress, coping self-efficacy has notyet been examined in this context. Coping self-efficacy is aperson’s judgment about their capacity to manage and copewith a designated event, that in this circumstance would beundergoing radiation therapy[19]. Coping self-efficacy hasbeen found to be associated with improved adjustment toother stressful situations such as traumas, chronic illnessesas well as cancer[20,21]. It may be that educational inter-ventions assist patients preparing for cancer treatments byimproving their coping self-efficacy for managing treatmentconcerns and side effects.

Accordingly, the current study assessed the effect of apreparatory educational video about radiation therapy onpatients’ treatment-related adjustment. The assumptionsunderlying the selection of outcome variables were that byproviding accurate and reassuring information about radia-tion therapy, the video would increase patients’ knowledgeabout treatment, and in turn increase their confidence intheir ability to cope effectively with treatment as well asreduce treatment-related psychological distress. As well,increased knowledge would provide patients with the re-sources to better manage treatment side effects, therebyreducing physical effects from treatment. Thus, it was hy-pothesised that compared to patients in the control condi-tion, patients who receive the educational video will report:(1) less cancer-related psychological distress; (2) increasedknowledge about radiation therapy; (3) higher levels ofself-efficacy about coping with radiation therapy; and (4)better physical well being.

2. Method

2.1. Participants

Participants in the study were 66 breast cancer patients and26 head and neck cancer patients referred for radiation ther-apy to the Mater Clinic, Division of Oncology in Brisbane,Australia. Selection criteria were that the patients must: (1)have been newly diagnosed with head and neck cancer or anearly stage breast cancer; (2) have no prior history of can-cer or having received radiation therapy; (3) be able to readand speak English; (4) have no current psychiatric history;(5) have no previous history of head injury that has causedcognitive impairment; and (6) be over 18 years of age.

2.2. Procedure

For this study, a conventional randomisation procedurewas considered inappropriate. Specifically, in the publichospital clinic where patients were to be recruited from,patients who received the video intervention would have theopportunity to discuss the video with control group patients.This would potentially contaminate the control conditionsand also could lead to control group patients requestingcopies of the video. Accordingly, we utilised a longitudinalquasi-experimental design using two consecutive phases.The control group phase was undertaken first to minimisethe possibility of intervention group conditions carryingover to the control condition. Recruitment for each phasewas undertaken over an 11-week period with all eligibleconsecutive patients approached. The intervention phaseimmediately followed the control phase.

In the first phase, 44 patients (BC= 31; H&N = 13) wererecruited to the study as the comparison control group (CC)(81% response). However, a large number of head and neckpatients(n = 22) who were seen at the clinic during thistime were not approached due to failing to meet the selectioncriteria on the basis of having previously received radiationtherapy or, more commonly, having a concurrent illness suchas Korsakoff’s Psychosis, other alcohol-related illness, de-mentia, or previous stroke. The CC group received the usualpatient information and support that is currently providedat presentation for planning, that included a printed book-let about radiation therapy and verbal advice about treat-ment provided in the initial consultation by the radiationoncologist.

In the second phase, 48 patients (BC= 35; H&N =13) were recruited to the intervention group (IV) (81% re-sponse). As previously, a number of head and neck patients(n = 13) who were seen at the clinic during this time werenot approached due to failing to meet the selection criteriaon the basis of concurrent illness. The IV group receiveda copy of the new patient education video, in addition tothe usual patient information and support. Patients were in-structed to view this video at home before they presentedfor planning. Patients in the IV group who did not have a

Page 3: Evaluating patient education materials about radiation therapy

J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332 327

Table 1Demographics of patients in the control and intervention groups

Control group Intervention group

Breast(n = 31)

Head/neck(n = 13)

Breast(n = 35)

Head/neck(n = 13)

Age (years)Mean 56.0 59.8 57.1 57.3S.D. 9.6 9.7 10.6 8.1

Marital status (%)Married/de facto 68 77 63 62Divorced/separated 22 23 17 15Widowed 7 0 14 0Single 3 0 6 23

video player at home were offered the opportunity to viewthe video in the clinic setting or at the Queensland CancerFund Patient Resource Centre.

The extent to which patients in the intervention groupviewed and utilised the “Understanding Radiation Therapy”video was monitored at each subsequent assessment. Anintention-to-treat approach was used with all patients in theIV group included in the analyses regardless of whether theyactually viewed the video. The use of other informationalresources by patients in both the CC and IV groups wasalso monitored at each assessment.Table 1describes basicdemographic characteristics of breast cancer and head andneck cancer participants in the CC and IV groups. Addi-tional demographic information relating to educational at-tainment, proposed treatment, information sought about ra-diation therapy and history of psychological treatment wasalso obtained from the control and intervention samples andis reported inTable 2.

Participants were assessed at three time points duringspecified clinic visits. First, the pre-test assessment occurredafter the first consultation meeting with the radiation on-cologist. Second, the post-test assessment took place at thefirst visit for planning but before the actual planning pro-cedure. Third, the follow-up assessment was undertaken atcompletion of their course of radiation therapy. Recruitmentof patients and assessments were undertaken by experiencedradiation therapy nurses who were working in the clinic.

2.3. Materials

2.3.1. Educational intervention: the “UnderstandingRadiation Therapy” video

The “Understanding Radiation Therapy” video is a 25 minpatient education resource developed by the author (SS) incollaboration with the Division of Oncology Mater QRI (PR,RA and others). Multiple consultations with patients andtheir families were undertaken to ensure that the resourcewas targeted to the needs of patients preparing for outpa-tient radiation therapy. A professional production group wascontracted for script writing and video production.

Table 2Demographic data related to patients’ medical treatment, information andpsychological history and educational level

Control group Interventiongroup

n = 44 (%) n = 48 (%)

Treatment receivedChemotherapy 14 32 10 21Surgery 43 98 47 98Other treatment 4 19 4 8

Sought information fromsources other than the doctor

18 41 9 19

Source of informationInternet 2 11 1 11Library/books 3 17 3 33Friends/family 12 67 5 56Cancer services organisation 2 11 1 11Other Sources 5 28 2 22

Previously consulted apsychologist, psychiatrist orcounsellor

6 14 6 13

Reason for consultationMarital therapy 1 17 2 33Depression 1 17 2 33Other 4 67 2 33

Highest level of educationPrimary school 3 7 3 6High school (year 8–10) 25 57 29 60High school (year 11–12) 10 23 5 10Vocational training 3 7 4 8University 2 5 7 15

The “Understanding Radiation Therapy” video aims toassist patients who are considering or preparing for radiationtherapy by:

• explaining what radiation therapy is and how it works;• preparing patients for the physical experience of radiation

therapy through both verbal explanation and visual repre-sentations;

• clarifying common misconceptions about radiation ther-apy, e.g. that radiation therapy makes you radioactive, thatradiation therapy and chemotherapy are the same.

2.3.2. Assessment measuresA short structured interview was conducted at recruitment

to assess relevant socio-demographic variables (age, maritalstatus, educational level and past psychological difficulties).

At each of the three assessment points, a self-report ques-tionnaire that included five measures was administered.

(i) The knowledge of radiation therapy scale, a 12-itemmeasure was developed for the current study to assesscontent components of the “Understanding RadiationTherapy” video. Items for this measure were derivedby three of the authors (SS, PR, JS) by reviewing thevideo script and identifying key messages. For eachitem, respondents were asked to indicate if they thought

Page 4: Evaluating patient education materials about radiation therapy

328 J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332

the statement was ‘true’, ‘false’ or ‘do not know’. Thescale includes seven false items (e.g. ‘the skin has to bemarked each day for radiation therapy’) and five trueitems (e.g. ‘during each radiation therapy treatment,the patient is left alone when the beam is on’). As partof the development process for this measure, five laypeople who had had no previous personal experienceof radiation therapy completed the measure before andafter viewing the video. The participants’ median scorebefore viewing the video was four correct answers andthe median post-score was 12. On this basis, the mea-sure was deemed to be acceptable.

(ii) The psychological distress subscale of the psychosocialadjustment to illness scale (PAIS-SR)[22] was used tomeasure patients’ levels of anxiety and depression (sub-scale 7; eight items). Internal reliability for this subscaleis 0.81 with construct validity demonstrated against theSymptom Checklist-90-Revised (SCL-90-R;r = 0.83)[23]. Participants are asked to indicate how frequentlythey have experienced different psychological distresssymptoms over the past week on a four-point scaleranging from 0 to 3. In the present study, internal con-sistency for the PAIS-SR was good. Cronbach’s alphaat Time 1= 0.88, Time 2= 0.88 and Time 3= 0.92.

(iii) The cognitive judgmental aspect of patients’ psycho-logical distress was measured with the ConstructedMeaning Scale (CMS)[24]. This eight-item scalemeasures the impact of illness on sense of identity,interpersonal relationships, and what the future holds.Positive meaning is associated with the coping strate-gies of denial and positive focusing, negative meaningis associated with avoidant coping. Constructed mean-ing is also predictive of personal control, body imageand overall psychosocial adjustment. Items includestatements about the person’s thoughts of whether theywill recover from their cancer and whether their lifewill ever be as good again. Participants are asked to in-dicate level of agreement with statements over the lastweek on a four-point scale ranging from strongly dis-agree (1) to strongly agree (4). Reliability and validityof the CMS has been established with a Cronbach’salpha of 0.81. In the present study, internal consistencyfor the CMS was good. Cronbach’s alpha at Time1 = 0.72, Time 2= 0.75 and Time 3= 0.83.

(iv) Physical well being was measured using the SF36physical functioning subscale[25]. The SF36 is awidely used measure that has well established relia-bility and validity and is able to differentiate betweendifferent clinical groups. The physical functioningsubscale has 10 items.

(v) Coping self-efficacy was assessed using the CancerBehaviour Inventory (CBI-L)[26]. Specifically, thesubscales, Coping with Treatment Side Effects (eightitems, alpha= 0.89) and Seeking and Understand-ing Medical Information (seven items, alpha= 0.88)were utilised. The CBI-L taps major domains of cop-

ing that are faced by people with cancer and scoreson the CBI-L are highly correlated with psychosocialadjustment. In the present study, internal consistenciesfor the CBI-L subscales were good. Cronbach’s alphaat Time 1, Time 2 and Time 3 for each subscale wasas follows: 0.92, 0.93 and 0.91 (Coping with Treat-ment Side Effects); 0.94, 0.97 and 0.91 (Seeking andUnderstanding Medical Information).

3. Results

3.1. Comparative data: preliminary analyses

No significant differences were found between patientsin the control and intervention groups on key demographicvariables. Patients’ pre-test scores on each of the primaryoutcome variables are presented inTable 3. This table showsthat the CC and IV groups were significantly different atpre-test on whether or not they had sought information fromsources other than their physician regarding radiation ther-apy (χ2(1) = 5.44; N = 92; P = 0.02) and on psycho-logical distress as measured by the PAIS (t = 2.02; d.f . =84.35; P = 0.046; equal variances not assumed). Conse-quently, these variables were entered as covariates in furtheranalyses to control for pre-test differences.

3.2. Outcome of exposure to video

To examine the effect of the video intervention, a seriesof ANCOVAs were conducted on the primary outcome vari-ables with the post-test score as the dependent variable andthe pre-test score as the covariate, respectively, in each anal-ysis. Analyses were run as two group one-way ANCOVAsto examine post-test sample differences and as 2 (Group:video versus control)× 2 (Time: post-test versus follow-up)ANCOVAs. These showed that there were no significant

Table 3Mean scores on information seeking and outcomes variables at pre-test

Variable Control group Interventiongroup

Has sought information from asource other than the physician

41%∗∗ 19%∗∗

Psychological distress 4.64∗ (3.81) 6.60∗ (5.44)

Knowledge about radiation therapy 8.30 (2.71) 8.19 (2.89)

Coping with side effects self-efficacy 56.88 (11.85) 54.81 (12.70)

Seeking medical informationself-efficacy

52.52 (10.68) 54.66 (10.00)

Physical functioning 23.95 (5.14) 23.60 (5.06)

Constructed meaning 24.46 (3.55) 22.78 (4.45)

The values given in the parentheses are S.D.∗ P < 0.05.∗∗ P < 0.02.

Page 5: Evaluating patient education materials about radiation therapy

J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332 329

Table 4Summary of ANCOVA results

Outcome variable Post-testF P Follow-up F P

Psychological distress 0.27 0.61 0.15 0.70Physical functioning 3.58 0.06 0.03 0.86Constructed meaning 1.04 0.31 1.68 0.20Coping with side effects

self-efficacy0.02 0.89 0.04 0.85

Seeking medical informationself-efficacy

0.10 0.76 0.90 0.77

Knowledge 3.36 0.07 1.76 0.19

effects of exposure to the videotape on any of the outcomevariables. These results are summarised inTable 4. Meanscores for participants in each group on all outcome vari-ables are listed inTable 5, and these demonstrate that overtime all participants maintained or improved their level offunctioning on all outcome variables. No differences werefound on dependent variables for cancer site.

3.3. Participants’ perceptions of the helpfulness ofthe video

In all, 90% of participants in the intervention group re-ported that they viewed the video before presenting for plan-ning (Time 2). Of these, 82% viewed the video once, 7%viewed it twice, and 11% viewed it three or more times. Atthe completion of treatment (Time 3) participants in the in-

Table 5Mean scores on outcome variables for each treatment group at eachassessment point

Outcome variables Time 1 Time 2 Time 3

Psychological distressControl 4.64 (3.81) 4.05 (3.35) 3.47 (3.07)

Intervention 6.60 (5.44) 5.15 (5.00) 4.77 (5.77)

Physical functioningControl 23.95 (5.14) 25.48 (4.16) 25.41 (4.24)

Intervention 23.60 (5.06) 23.72 (5.76) 23.42 (4.96)

Constructed meaningControl 24.46 (3.55) 23.34 (4.05) 25.19 (4.26)

Intervention 22.78 (4.45) 22.77 (5.21) 23.42 (5.54)

Coping with side effects self-efficacyControl 56.88 (11.85) 58.18 (12.23) 64.14 (9.40)

Intervention 54.81 (12.70) 57.72 (11) 62.49 (9.77)

Seeking medical information self-efficacyControl 52.52 (10.68) 54.09 (11.33) 57.29 (7.36)

Intervention 54.66 (10) 55.89 (9.75) 57.18 (8.5)

KnowledgeControl 8.30 (2.7) 9.32 (2.82) 10.05 (1.38)Intervention 8.19 (2.89) 10 (2.23) 10.26 (1.54)

Note: For psychological distress higher scores indicate greater distress. Forall other variables higher scores indicate better functioning. The valuesin the parentheses are S.D.

tervention group were administered a questionnaire askingabout their perceptions of the helpfulness of the video.

Overall, 93% of participants indicated that the video wasvery easy to understand with only 2% reporting that thevideo was not easy to understand. In all, 61% of participantsthought the video was very effective in preparing them forradiation therapy, 23% reported the video as moderately ef-fective, 11% somewhat effective and only 5% reported thatthe video was not effective. Similarly, 80% rated the videoas excellent in appearance and production and as very infor-mative and helpful and 16% as satisfactory to good on theseaspects, again with only 5% indicating dissatisfaction.

The video includes presentations from a radiation ther-apist, a radiation oncologist, a radiation therapy nurse andthree patients who have had radiation therapy. Participantswere asked to rate each of these sections as to how well thisinformation had prepared them for treatment and whether theinformation was new to them. Participants rated all sectionspositively for how well this prepared them, with 80–90% ofparticipants rating each section as moderately to very effec-tive.

In addition, approximately 90% of all participants indi-cated that some or all of the information in the video wasnew to them. All participants reported that they would rec-ommend this video to other people who are having radia-tion therapy for cancer. Patients also reported their personalthoughts about how the video was helpful. Examples of theseare listed inTable 6.

Table 6Examples of comments by patients about the helpfulness of the video

All areas of the procedures were covered in an informative and relaxedmanner. The ‘not knowing’ what to expect was eliminated.

We are all afraid of the unknown. If we get information like this wecan prepare ourselves for what has to be done.

Watching the video enabled me to prepare myself. It took away the fearof the unknown. I was a lot more relaxed after the first visit. If I hadnot had the video it would have taken me longer to accept thefriendly monster.

It helped dispel any fears about radiation therapy.

I think when you are told you have cancer it is such a terrible shock,one feels it is the end of the world, and there is no point in living.But after seeing this video and talking to the doctors and nurses itcertainly puts one mind to rest, especially seeing it all on screen.

Having been told a lot of information I found it was difficult to take itall in. But after finding the right moment to look at the video (I wasnervous) I found it helped so much preparing me for radiation therapy.I am so grateful I was able to se the video, it helped me very much.

It takes way the fear of the unknown and helped my family and friendsto understand the process as well.

I was less afraid after watching video. I like to know what to expect, Ido not like information being kept from me. The video was fact, Ilike fact.

I consider myself to be well informed but found some information ofwhich I was unaware. For that reason I would recommend it toanyone having radiation therapy.

Page 6: Evaluating patient education materials about radiation therapy

330 J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332

4. Discussion

Patients in the intervention group who received the videoreported very high levels of utilisation and satisfaction withthis patient education resource. As well, most patients re-ported that the video provided them with information aboutradiation therapy that was new to them. Thus, the face va-lidity of the video was excellent and consumer endorsementhigh. Despite this, however, there were no significant differ-ences on the outcome measures of knowledge, psychologicaldistress, coping self-efficacy or physical symptoms. Thereare a number of reasons why these results may have oc-curred. First, the patients’ pre-test scores indicated that theywere already knowledgeable about radiation therapy andtheir levels of psychological distress were low. For example,at the pre-test, the patient groups had knowledge scores thatwere twice those of the lay group used to pilot the knowl-edge test. This may have created a ceiling effect, reducingour ability to detect improvements in outcome variables us-ing standardised measures. The finding that patients’ knowl-edge scores at the final assessment were similar to those atthe second assessment also suggests a ceiling effect.

Second, the research nurses who recruited and assessedpatients for both the CC and IV groups were experiencedradiation therapy nurses. The beneficial effects for patientsin the control group of meeting and talking to these nursesmay have also reduced the ability to detect differences be-tween groups. For example, patients in the control groupwere aware that they would see the research nurse againwhen they presented for treatment, and these nurses had alsoprovided them with written materials on radiation therapyas part of their standard care. Thus, the video interventionas a single additional self-administered educational resourcemay not have been sufficiently powerful to effect the out-come variables over and above the care received by the con-trol group.

Third, there were significant differences between the CCand IV groups on psychological distress and whether patientshad already sought information from other sources about ra-diation therapy. For example, only 19% of the IV group hadpreviously sought information from sources other than thephysician whereas this figure was 41% for the CC group. Al-though these differences were accounted for in the analyses,it may be that patients in each group differed on other im-portant variables that were not measured. Miller[27] sug-gests that people’s responses to disease-related informationmay be affected by their information processing style whichcould mean that people who have a ‘monitoring’ style maybe more likely to find treatment-related information helpfulcompared to those who have a ‘blunting’ style. Includingassessment of patients’ information processing styles maybe important in future research on the benefits of patienteducation.

A strength of this study was the inclusion of patients withhead and neck cancer, who are in general less represented inintervention studies by comparison to breast cancer patients

[28]. Head and neck cancer patients may be particularlyvulnerable to adjustment problems after cancer due to thesubstantial morbidity associated with treatments, that mayinclude speech loss, changes to facial appearance andchanges in taste and smell[29]. Further, it has been sug-gested that alcohol consumption and smoking are highlyprevalent in this patient population, themselves health be-haviours that may be associated with difficulties in psycho-logical adjustment[30]. Consistent with this, in the courseof recruitment a large number of head and neck patients inthe present study failed to meet the selection criteria due toco-morbidity such as alcohol-related psychiatric and otherillnesses. In summary, of all head and neck patients seen inthe study period, the number who were excluded(n = 35)exceeded those who were eligible(n = 26). This problemhas been raised in general, where the patients who may bemost likely to benefit clinically from interventions are typi-cally excluded from controlled psychological research[31].For head and neck patients, this barrier needs to be addressedin order to develop a knowledge base sufficient to adequatelyinform the development of appropriate interventions.

4.1. Practice implications

This study raises important issues about methods of eval-uating patient education materials. However, these resultsdo not suggest that health professionals should abandon thedevelopment of such resources. Increasingly, patients willaccess treatment information from a range of sources priorto presenting for treatment. Sources of information may in-clude cancer helplines, Internet health sites, and social net-works. As well, the acceptance of the importance of patienteducation by health care teams and the activities of can-cer organisations in promoting patient education materialsmay have led to patients being better informed generallyabout cancer treatments. In this context, it may be difficultto detect improvements in patients’ knowledge and adjust-ment as a result of a single focus educational interventionusing standard measures. Compounding this problem, effectsizes are often low in studies assessing the benefits of ed-ucational interventions, with structured psycho-educationalgroups appearing to provide greater benefits[32]. However,given that many patients are reluctant to attend group pro-grams, self-help materials remain an important educationalresource that is easily accessed and by contrast to profes-sionally delivered group programs, inexpensive.

The question then arises as to how to validate educationalresources. This is an important issue for health serviceswhere evidence of effectiveness by the gold standards ofevidence-based medicine (that is, randomised control trials)is now often a precursor to program funding. Problemat-ically, it may arise that educational interventions that areseen by practitioners to work effectively in the field but thatfail to meet these standards are inappropriately disregardedon this basis[33]. Bredart et al.[34] recently suggestedthat randomised controlled trials should be seen as only one

Page 7: Evaluating patient education materials about radiation therapy

J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332 331

Table 7Standards for assessing educational resources

Criteria Indicators

Responsiveness to need Evidence of needs assessment precedingresource developmentClearly defined scope and aim

Acceptability to keystakeholders

Consultation with health professionals frommedical, nursing and allied health disciplinesConsultation with consumersEndorsement by key professional bodies

Scientific quality ofinformation

Adherence to evidence-based clinical practiceguidelinesMechanism for updating information over time

Content presentation Assessment during production of readability,style of language, use of text, diagrams andvisual images and overall production quality

Consumer satisfaction Assessment of consumer satisfaction of theresource before final release

aspect of an iterative process to assess the worthiness ofpsychosocial interventions. Thus, in the case of applied re-search in patient education there are instances where othermethodologies may be more appropriate.

One approach may be to utilise exploratory and qualita-tive methods to assess the effect of educational resources onpatients’ understanding of their disease and its treatment.For example, health education materials may reduce un-helpful or inaccurate cognitions about medical treatments.This may be particularly important for treatments such asradiation therapy where patients may have negative layhealth beliefs that persist during treatment[35]. A range ofqualitative methods can be considered here. For example,verbal protocol analysis (VPA), a method commonly usedin clinical psychiatric and experimental settings, providesunique information about how a person is thinking abouta stimulus that cannot be obtained using traditional penand paper measures[36]. In a recent study with men withlocalised prostate cancer, Steginga et al.[37] found VPA tobe an effective method to identify men’s treatment-relatedbeliefs, particularly with regard to treatment efficacy andside effects. An alternative approach may be to validate pa-tient education resources through quality assurance methodsthat include a review of the processes used to develop theresources.Table 7lists a number of criteria and indicatorsfor these that can serve as a guideline. Patient educationmaterials that meet these criteria can then be accepted byhealth professionals and treatment centres as worthwhileand utilised accordingly as part of comprehensive patientcare.

Acknowledgements

We gratefully acknowledge the assistance of the NursingStaff and Radiation Therapists of the Division of Oncology

Mater Queensland Radium Institute in the undertaking ofthis study.

References

[1] Andersen BL. Predicting sexual and psychological morbidity andimproving the quality of life for women with gynaecological cancer.Cancer 1992;71:1678–90.

[2] Ferrell BR, Grant MM, Funk B, Otis-Green S, Garcia N. Qualityof life in breast cancer survivors as identified by focus groups.Psychooncology 1997;6:13–23.

[3] Maunsell E, Brisson C, Dubois L, Lauzier S, Fraser A. Work prob-lems after breast cancer: an exploratory qualitative study. Psychoon-cology 1999;8:467–73.

[4] Steginga SK, Occhipinti S, Wilson K, Dunn J. Domains of distress:the experience of breast cancer in Australia. Oncol Nurs Forum1998;25:1063–70.

[5] Taylor EJ, Outlaw FH, Bernado TR. Spiritual conflicts associatedwith praying about cancer. Psychooncology 1999;8:375–466.

[6] Smith MY, Redd WH, Peyser C, Vogl D. Post-traumatic stress dis-order in cancer: a review. Psychooncology 1999;8:521–37.

[7] Guadagnoli E, Ward P. Patient participation in decision making. SocSci Med 1998;47:329–39.

[8] Thomas R, Thornton H, Mackay J. Patient education materials in on-cology: are they needed and do they work. J Clin Oncol 1999;11:225–31.

[9] Fallowfield L, Ford S, Lewis S. No news is not good news: informa-tion preferences in patients with cancer. Psychooncology 1995;4:197–202.

[10] Fallowfield L, Jenkins V. Effective communication skills are the keyto good cancer care. Eur J Cancer 1999;35:1592–7.

[11] O’Rourke ME. Narrowing the options: the process of deciding onprostate cancer treatment. Cancer Invest 1999;17:349–59.

[12] Buick DL, Petrie KJ, Booth R, Probert J, Benjamin C, Harvey V.Emotional and functional impact of radiotherapy and chemother-apy on patients with breast cancer. J Psychosoc Oncol 2000;18:39–62.

[13] Butow P, Brindle E, McConnell D, Boakes R, Tattersall M. Infor-mation booklets about cancer: factors influencing patient satisfactionand utilisation. Patient Edu Counsel 1998;33:129–41.

[14] Onel E, Hamond C, Wasson JH, Berlin BB, Ely MG, Laudone VP,et al. Assessment of the feasibility and impact of shared decisionmaking in prostate cancer. Urology 1998;51:63–6.

[15] Thomas R, Deary A, Kaminski E, Stockton D, De Zueew N. Patients’preferences for video cassette recorded information: effect of age.Eur J Cancer Care 1999;8:83–6.

[16] Johnson JE, Nail LM, Lauver D, King KB, Keys H. Reducing thenegative impact of radiation therapy on functional status. Cancer1988;61:46–51.

[17] Hagopian GA. The effects of informational audiotapes on knowledgeand self-care behaviours of patients undergoing radiation therapy.Oncol Nurs Forum 1996;23:697–700.

[18] Poroch D. The effect of preparatory patient education on the anxietyand satisfaction of cancer patients receiving radiation therapy. CancerNurs 1995;18:206–14.

[19] Bandura A. Social foundations of thought and action. Upper SaddleRiver, New Jersey: Prentice-Hall; 1986.

[20] Benight CC, Antoni MH, Kilbourne K, Ironson G, Kumar MA,Fletcher MA. Coping self efficacy buffers psychological physiologydisturbances of HIV infected men following a natural disaster. HealthPsychol 1997;16:248–55.

[21] Telch CF, Telch MJ. Group coping skills instruction and supportivegroup therapy for cancer patients: a comparison of strategies. JConsult Clin Psychol 1986;54:802–8.

Page 8: Evaluating patient education materials about radiation therapy

332 J. Dunn et al. / Patient Education and Counseling 52 (2004) 325–332

[22] Derogatis LR. Psychosocial adjustment to illness scale (PAIS andPAIS-R): administration, scoring and procedures manual, vol. 1.Baltimore: Clinical Psychometrics Research; 1983.

[23] Derogatis LR. The psychosocial adjustment to illness scale (PAIS).J Psychosom Res 1986;30:77–91.

[24] Fife BL. The measurement of meaning in illness. Soc Sci Med1995;40:1021–8.

[25] Ware JE, Sherbourne CD. The MOS 36 item short form health survey(SF-36). 1. Conceptional framework and item selection. Med Care1992;30:473–83.

[26] Merluzzi TV, Martinez Sanchez M. Assessment of self efficacyand coping with cancer: development and validation of the CancerBehaviour Inventory. Health Psychol 1997;16:163–70.

[27] Miller SM. Monitoring versus blunting styles of coping with cancerinfluence the information patients need and want about their disease.Cancer 1995;76:167–77.

[28] Newell S, Sanson-Fisher RW, Savolainen NJ. Systematic review ofpsychological therapies for cancer patients: overview and recommen-dations for future research. J Natl Cancer Inst 2002;94:558–84.

[29] Kuyaga A, Akechi T, Okamura H, Mikami I, Uchitomi Y. Correlatesof depressed mood in ambulatory head and neck cancer patients.Psychooncology 1999;8:494–9.

[30] Grant BF, Harford TC. Comorbidity between DSM-IV alcohol usedisorders and major depression: results of a national survey. DrugAlcohol Depend 1995;39:197–206.

[31] Coyne JC, Kagee A. More may not be better in psychosocial inter-ventions for cancer patients. Health Psychol 2001;20:458.

[32] Fawzy FI, Fawzy NW, Canada AL. Psychoeducational interventionsfor patients with cancer. In: Andersen BL, Baum A, editors. Psy-chosocial interventions for cancer. Washington (DC): American Psy-chological Association; 2001. p. 235–67.

[33] Celemajer DS. Evidenced-based medicine: how good is the evidence?Med J Aust 2001;174:293–5.

[34] Bredart A, Cayrou S, Dolbeault S. Re: systematic review of psycho-logical therapies for cancer patients: overview and recommendationsfor future research. J Natl Cancer Inst 2002;94:1810–1.

[35] Long LE. Being informed: undergoing radiation therapy. Cancer Nurs2001;24:463–8.

[36] Ericsson KA, Simon HA. Protocol analysis: verbal reports as data.revised ed. Massachusetts: MIT Press; 1993.

[37] Steginga SK, Occhipinti S, Gardiner RA, Yaxley J, Heathcote P.Making decisions about localised prostate cancer. Br J Urol Int2002;89:255–60.