Fax: (011) 61 2 9036 5420
Can a “prompt list” empower cancer patients to ask relevant questions?†
Article first published online: 16 MAY 2008
Copyright © 2008 American Cancer Society
Volume 113, Issue 2, pages 225–237, 15 July 2008
How to Cite
Dimoska, A., Tattersall, M. H.N., Butow, P. N., Shepherd, H. and Kinnersley, P. (2008), Can a “prompt list” empower cancer patients to ask relevant questions?. Cancer, 113: 225–237. doi: 10.1002/cncr.23543
There were no conflicts of interest, financial or otherwise.
- Issue published online: 8 JUL 2008
- Article first published online: 16 MAY 2008
- Manuscript Accepted: 11 FEB 2008
- Manuscript Revised: 9 JAN 2008
- Manuscript Received: 16 OCT 2007
Encouraging cancer patients to actively participate and ask questions in their consultation is important so that they can achieve a greater understanding of, and take a more autonomous role in, their medical care. A number of positive patient psychological outcomes have been linked with greater patient participation including greater satisfaction with the consultation, lower levels of anxiety and distress, and overall resolution of symptoms.1–3 Although most cancer patients express a desire for full information about their illness and treatment,4 often they are uncertain about what they should ask their physicians. Equally, clinicians may not be sure of the type and degree of information the patient would like and providing too much or too little information may leave the patient feeling distressed.4 Communication interventions aid in this regard by helping patients to identify concerns and questions they may have about their diagnosis and treatment, and by encouraging them to seek information and answers. Patient-centered approaches include coaching either face-to-face or via interactive multimedia,5, 6 or providing patients with decision aids,7 question prompt lists,8 or audiorecordings of consultations for review.9, 10
Question prompt lists (QPLs) are an inexpensive means of facilitating communication between patients and physicians consisting of a structured list of questions that patients may wish to ask their physician about illness and treatment. Evidence-based lists are typically derived from content analyses of physician-patient interactions11 or from focus groups and interviews with patient and health professionals.12 Patients are typically given the QPL before their consultation to read through and determine which questions they would like answers to. Versions of the QPL have been utilized in a number of healthcare contexts including cancer,8 diabetes,13 coronary disease,14 geriatric medicine,15 general practice,16 gynecological and dermatological problems,17 surgical patients,18 and parents of children with neurological problems.19
Since 1994, we3, 8, 11, 20–22 and others23–25 have reported on a number of randomized controlled trials (RCTs) that have examined the effectiveness of a QPL in encouraging cancer patients to seek more information about their illness and care. Others have examined the utility of the QPL for cancer patients in uncontrolled or implementation studies.12, 26–31 As the QPL is a relatively simple and inexpensive intervention to implement into routine care, demanding little financial and staffing resources to distribute the pamphlet to cancer patients, a review of the findings to date is warranted to assess the likely benefits and costs of a large-scale implementation. There are a few systematic reviews that have reported on the effectiveness of various patient communication aid interventions, including QPLs, in a range of clinical settings.32–34 However, these are not specific to the cancer setting. In a recent Cochrane review, 33 RCTs were reviewed and 9 of these pertained to cancer patients.34 Overall, they found interventions produced limited benefits to patients, but suggested that they may be more useful for particular patients. Parker et al.9 gave a brief review of the use of QPLs in a cancer setting and found that they were well received by patients and providers and that they may increase specific types of questions asked regarding disease and treatment.
Use of the QPL in noncancer settings have shown variable results. For example, the QPL had no or little effect on the number of questions asked by diabetic patients34 and on self-reported patient involvement by patients with coronary artery disease (CAD)34 and geriatric patients in primary care15, 16; however, a QPL to help patients about to undergo surgery in making an informed choice between general and regional anesthesia was found to significantly increase question-asking in the consultation.18 It has been suggested that lack of effects in the former studies were due to the use of a general QPL containing questions that were not directly relevant to patients, and that disease-specific interventions may have more success in improving patient involvement. Furthermore, the utility of QPLs may be different for patients who, confronted with serious decisions and uncertain outcomes, may have greater needs for information and perhaps greater difficulty expressing these needs.
We aim to review findings of reported studies to date to examine whether a simple QPL empowers cancer patients to participate more and ask relevant questions of their physician in the medical consultation, and whether this in turn is associated with positive psychological outcomes for the patient.
MATERIALS AND METHODS
A review of the literature was performed to identify both controlled and noncontrolled studies that have examined the effectiveness of the QPL in encouraging cancer patients to communicate and be more involved in their consultation with their physician. A literature search was performed using the databases PsychINFO, CINAHL, and MEDLINE from the year 1965 to 2006. Searches were based on the following strategy:
- 1prompt sheet OR checklist OR helpcard OR card
- 2question AND list
- 3patient participation
- 4patient involvement
- 5communication aid
- 7cancer OR oncology
- 8(3 OR 4) AND (5 OR 6) AND 7
Searches were also performed on key authors in the area and the reference lists of all located articles were scanned for additional relevant articles. All searches were conducted in English and the only studies identified by the search were in English.
Strict selection criteria were adopted to focus the review on the effectiveness of QPLs in facilitating communication for cancer patients in consultations. Studies were included if they satisfied criteria in 3 categories: participant population, intervention, and outcome measures. The participant population was limited to patients diagnosed with cancer. The intervention had to be: a written prompt directed toward the patient, designed to encourage the patient to participate in the medical consultation, and provided preconsultation. At least 1 of the outcome measures had to be related to communication between patients and physicians. Based on these criteria, 1 study was excluded because the only outcome measured was patient satisfaction,27 and another because the QPL was specific to helping patients find out about clinical trials.35 Abstracts and unpublished studies were excluded.36 Studies were included if a QPL was provided to patients as part of a larger communication intervention (eg, decision aids, information booklets, or coaching).
Because of the small number of RCT studies and the large variation in outcome measures between them a meta-analysis could not be performed. Objective, subjective, and psychometric measures were assessed separately. Communication-related measures included frequency and likelihood of patient question asking coded from recorded consultations, patient self-report of questions asked, whether the QPL aided communication with the physician, perceived helpfulness or usefulness, and match between preferred and perceived participation roles in the consultation. Patient psychological outcomes derived from psychometric measures included anxiety, satisfaction with the consultation, depression, and psychological adjustment. Patient recall of medical information postconsultation was also reported. Potential costs of implementing the QPL into routine care were assessed via the effect of the QPL on the duration of the consultation.
The review identified 15 studies (n = 2159), including 9 randomized-controlled studies,3, 8, 11, 20–25 2 sequential time-controlled studies,26, 31 and 4 uncontrolled or observational studies.12, 28–30 Table 1 outlines the methodology and design characteristics of the studies. Controlled studies compared patients who received the QPL with patients who received usual care or a general information sheet. Uncontrolled studies included 1 using a within-subject, pre- versus post-test design,28 2 examining the development of the QPL,12, 30 and another reporting on the implementation of the QPL at a cancer clinic over the course of 1 year.29 Gattellari et al.3 used a subset of the sample in Brown et al.8 All but 1 study were published in the last decade.
|Study||Country||Design||Intervention||Participating physicians||Total no.||Patient characteristics|
|Age, y||% Male||% High school||Disease type|
|Brown8||Aust||RCT||QPL (17 questions)||5 medical, 4 radiation oncologists||320||56||56||71||Breast, GI, GU|
|Bruera23||US||RCT||QPL (22 questions)||medical oncologists||60||54||0||97||Breast only|
|Butow21||Aust||RCT||QPL (11 questions)||1 medical oncologist||142||51||16||nr||Mainly breast|
|Butow20||Aust||RCT||Consultation preparation pack(19 questions)||2 medical, 2 radiation oncologists||164||58||46||62||Mainly breast, lung|
|Clayton22||Aust||RCT||QPL (112 questions)||15 palliative care physicians||174||65||61||33||Palliative care|
|Gattellar3||Aust||RCT||QPL (17 questions)||5 medical, 4 radiation oncologists||233||57||57||91||Mainly breast, colorectal|
|Ambler26||UK||Sequential||Individually prepared questions + support (no. of questions varied)||nr||103||50||0||nr||Breast|
|Brown11||Aust||RCT||QPL vs QPL + coaching (17 questions)||2 medical oncologists||60||53||49||45||Mainly breast|
|Davison & Degner24||Canada||RCT||QPL + coaching + information pack + audiotape of consultation (no. of topics not reported)||2 urologists||60||68||100||42||Prostate|
|Davison & Degner25||Canada||RCT||Computer generated individually prioritized information categories (9 topics)||3 oncology outpatient clinics||749||72% >50||0||73||Breast|
|Sepucha31||US||Sequential||Individually prepared questions + support (no. of questions varied)||7 oncologists, 2 surgeons||94||nr||0||nr||Breast|
|Clayton12||Aust||Development||QPL (112 questions)||22 palliative care physicians||19||7 <60||58||84||Palliative care|
|Davison & Degner28||Canada||Pre vs Post||Computer generated individually prioritized information categories (9 topics)||urologists||74||62||100||81||Prostate cancer|
|Glynne-Jones29||UK||Implementation||QPL (22 questions)||2 consultants, 2 oncology registrars, 1 hospital practitioner||300||Median 67||55||nr||Lung, colorectal, GI, urological|
|McJannett30||Aust||Development||QPL (59 questions)||8 surgeons||22||55||50||72||Melanoma|
QPL Development and Structure
The number of questions contained in the QPL varied dramatically between studies. Questions were generally divided under subject headings such as: diagnosis, tests, treatment, prognosis, history/symptoms, and support, among others. QPLs were either developed from content analyses of physician-patient interactions,11 data collected from focus groups and interviews with patients and cancer health professionals,12, 30 or were individually tailored to patients' specific concerns.24–26, 28, 31
In the controlled studies the number of patients sampled ranged from 60 to 749 (median, 103; mean, 171.6; see Table 1). Across all studies the mean or median age of patients was equal to or greater than 50 years. In studies including both male and female patients, the average proportion of males was 49.8%. All but 6 studies reported the education level of patients, showing that an average of 68.3% patients had completed secondary school. Many samples were heterogeneous, including breast, lung, testis, prostate, colorectal, and other cancer types. The largest proportion across studies included (in descending order) patients with breast, gastrointestinal, and skin cancer. Participants were commonly at an early disease stage as opposed to metastatic, and the prognosis of the patients was typically in the order of years (ie, 1–5 years), except with studies examining palliative care patients.12, 22
Communication Outcome Measures
Table 2 lists the objective and subjective communication measures for RCT and uncontrolled studies. Six studies reported the frequency of patient question-asking measured from recorded transcribed consultations that were coded by a third party. Reported interrater agreement was high in these studies, between 0.7 and 0.9. Subjective self-report measures were reported in all 15 identified studies and included whether the patient generally perceived the QPL to be “helpful” or “useful,” whether it “aided communication” with their physician, and whether their perceived participation role in the medical consultation matched their preferred role.
|Study||Group comparisons||Objective measures||Subjective measures|
|Total QA||Sign. of total QA||Questions by topic||Likelihood ofasking 1 question||Self-reported question-asking||Helpfulness or usefulness||Aids Communication with doctor||Preferred or rerceived role|
|Brown11||QPL vs coaching||Median 15 vs 13||NS|
|QPL (combined with coaching) vs CN||Mean 14 vs 8.5||P < .05||Tests P < .05||Prognosis P = .09; Tests P < .05|
|Brown8||QPL (combined) vs CN||Mean 10.9 vs 11.1||NS||Prognosis P < .05||Prognosis P = .058|
|QPL vs QPL + endorse vs CN||Mean 10.8 vs 11.0 vs 11.1||NS|
|Bruera23||QPL vs CN||Mean 8.7 vs 10.3||NS||Diagnosis P < .05||P < .01||P = .01|
|Butow21||QPL vs CN||Mean 5.5 vs nr||NS||NS||Prognosis P < .05|
|Butow20||QPL vs CN||Mean 13 vs 9||P < .01||Prognosis P < .01||Prognosis P < .05||Approx. 67% found the CCPP extremely or very useful||Role mismatch:QPL vs CN P = .06|
|Clayton22||QPL vs CN||Mean 5.4 vs 2.3||P < .0001||Palliative care P < .0001; Lifestyle and QOL P < .0001; In the future P < .01; Support P < .0001||53% reported QPL prompted question asking||93% found QPL helpful and 90% found it useful||95% found QPL made it easier to ask questions|
|CN vs QPL vs QPL + endorsement||Mean 2.3 vs 2.6vs 4.2 vs 15.1||P < .0001|
|Davison & Degner24||QPL vs CN||QPL vs CN group active during consultation (P < .001)|
|Davison & Degner25||QPL vs CN||number of women in QPL group assumed a more passive role in consultation than they preferred pre-consultation|
|NS b/w groups in assumedrole during consultation|
|Gattellari3||QPL vs CN||Information exchange NS||Role mismatch NS|
|Ambler26||During consultation, across all groups (NS); but patients with benign lumps in QPL perceived involvement than CN (P < .05) at 6-mo follow-up|
|Clayton12||17/20 patients reported QPL prompted them to ask questions||19/20 patients found the QPL helpful and questions useful||17/20 patients reported QPL made it easier to ask questions|
|20/23 physicians reported QPL made it easier for patients to discuss end of life and prognosis|
|Davison & Degner28||number of patients took on an active role in consultation (78%) than number reporting this as preferred role (58%); those who preferred a passive role (7%) were not prompted to become more active|
|Glynne-Jones29||33 % felt that were able to ask more questions||88.6% very or fairly helpful of those that remembered QPL|
|McJannett30||15 /15 patients in a pilot reported the QPL to be useful|
|Sepucha31||Reduction in communication barriers was similar in both groups|
Frequency of patient questions
Three out of 6 RCT studies measuring total patient questions found a significant difference between QPL and control groups,11, 20, 22 and all 6 studies found that the QPL increased question-asking about specific topics.8, 11, 20–23 Patients seeing a medical or radiation oncologist who did not receive a QPL most commonly asked questions in consultation about treatment, followed by diagnosis.8, 11, 21, 23 The QPL prompted greater questions about tests,11 diagnosis,23 and prognosis.8, 20 Control patients seeing palliative care physicians predominantly asked questions regarding available support systems and end-of-life issues,22 while patients using a QPL asked questions about the palliative care service and team, lifestyle and quality-of-life, the illness, and what to expect in the future, as well as support.
Some studies found no overall difference between QPL and control groups in patient questions but still found increased question-asking about particular topics, such as diagnosis and prognosis.8, 23 A closer examination of questions by category-type revealed a reduction in treatment and disease history questions in the QPL groups.8 Although treatment was still the most frequently asked-about topic, disease history dropped from the third most frequently asked question in controls to the sixth most frequently asked about topic in patients using a QPL. This shows that the QPL may cause patients to shift focus of attention away from disease history and, to a lesser extent treatment, to concentrate more on prognosis and diagnosis.
Three studies reported on the likelihood that a QPL prompts a patient to ask at least 1 question about prognosis.8, 11, 21 All studies found either a significant effect or trend in favor of this effect. Brown et al.8 found that although occupation, education, age, and stage of disease were all related to frequency of question-asking about prognosis, the QPL accounted for this effect over and above the other variables. Although not published, Butow et al.20 also found a significant effect for the likelihood of asking a question about prognosis (Mann-Whitney U = 2670.5, P < .05).
The increase in questions from control patients to patients using the QPL was around 1.7 and 1.4 times in Brown et al.11 and Butow et al.,20 respectively, for patients seeing an oncologist. In contrast, Clayton et al.22 found patients in palliative care asked 2.3 times more ‘direct’ questions when given a QPL compared with controls. Between these studies a lower number of questions was asked by controls in Clayton et al.22 (see Table 2), indicating that palliative care patients may have greater difficulty asking questions and that the QPL may, therefore, be particularly useful to this group. Clayton et al.22 further found that patient questions increased relative to the level of physician endorsement of the QPL to the patient. Compared with patients whose physician did not endorse the use of the QPL, patients asked 1.6 and 5.8 times more questions when the physician provided basic or extensive endorsement, respectively. In fact, question-asking when there was no endorsement of the QPL was similar to the control group. However, Brown et al.8 found no effect of physician endorsement of the QPL on patient questions.
Bruera et al.23 found that patients rated the QPL as significantly more helpful in aiding communication with their physician compared with a general information sheet. Two studies found no differences between groups in the QPL's effectiveness for “facilitating information exchange”3 or “breaking down communication barriers.”31
Glynne-Jones et al.29 found that 88% reported the QPL to be ‘very’ or ‘fairly’ helpful on a 5-point scale of very helpful to completely unhelpful, with less than 1% finding it ‘completely unhelpful.’ Clayton et al.22 reported approximately 90% of patients agreed the QPL was useful or helpful. Butow et al.20 found a more modest 67% of patients reported that a cancer consultation preparation package containing the QPL was ‘extremely’ or ‘very’ useful on a 5-point scale, while 65% of patients reported that their family found the material very useful.
Perceived role in consultation
Two studies found no effect of the QPL on the patient's perceived role in the consultation,25, 26 while 1 study found that patients using a QPL felt they took a more active role in consultation than that reported by controls.24 When examining whether the QPL affected the match between a patient's preferred role in consultation (measured preconsultation) and their perceived actual role (measured postconsultation), the results were also conflicting, with 1 study finding no effects,3 while other studies showed a mismatch.20, 25, 28
Three studies reported on whether patients felt that the QPL helped them ask more questions. In Clayton et al.,12 17 out of 20 patients reported the QPL encouraged them to ask more questions. In a much larger study, only 33% of patients felt the QPL helped them ask more questions.29 In Clayton et al.,22 patients' subjective perceptions of question-asking were cross-checked with the objective measure taken from audiotaped consultations. Although there was a significant difference between control and QPL groups in overall frequency of question-asking, only 53% of patients responded “yes” when asked did the QPL “prompt you to ask your physician any questions?” This is also contrasted with the 95% of patients who agreed that that the QPL “made it easier to ask questions,” which, although worded more broadly than the previous question, should have resulted in a similar response rate. Inconsistency in responses suggests that participants may not be very good at accurately reporting their level of participation during consultations.
Patient Psychological Outcomes
Table 3 outlines the findings for patient psychological outcomes and physician measures. Twelve studies reported patient psychological outcome measures.
|Study||Anxiety||Patient satisfaction||Depression or psychological adjustment||Physician measures|
|Ambler26||in QPL than CN 2-wk postsurgery but this effect confounded by cancer type (P < .05)||Patients with benign lumps in QPL satisfaction (P = .07) at 2-wk follow-up||Distress NS|
|Brown11||NS post-consultation andat 1-wk follow-up||NS||NS|
|Brown8||QPL vs QPL + endorse andCN (P < .05) postconsultation; NS at 1-wk follow-up||NS|
|Butow20||QPL at preconsultation (P < .05); NS at postconsultation and 1-mo follow-up||NS||Depression NS||Satisfaction NS|
|Clayton12||QPL vs CN (no statistic)|
|All 23 physicians reported QPL did not interrupt consultation flow|
|Clayton22||NS at 24-hr and 3-wk follow-up||NS||Satisfaction NS|
|Davison & Degner24||State anxiety in QPL groupfrom pre- to 6-wk postconsultation (P < .01)|
|Davison & Degner25||NS|
|Davison & Degner28||Post- vs preconsultation(P < .001)||Satisfaction with doctor (NS)||Depression post- vs pre-test (P < .05)|
|Sepucha31||Satisfaction with consultation: QPL than CN (P < .01)|
The QPL generally had no effect on anxiety either immediately postconsultation,3 or at short- (1-week)8, 11 and long-term (1-month) follow-ups.20, 22 In some studies anxiety was shown to decrease after receiving the QPL.24, 28 One study found increased anxiety in patients using the QPL immediately following their consultation relative to controls, although this normalized at a 1-week follow-up, and patients who received endorsement from their physician to use the QPL did not differ from controls.8
Depression and psychological adjustment
Five studies examined patient depression, distress, or psychological adjustment and the QPL was found to have no effect on these psychological outcomes. Only Davison et al.28 found a reduction in depression post- compared with preconsultation.
Satisfaction with consultation
Patient satisfaction was the most common measure across studies (11 out of 15 studies), although only 1 study found a significant difference between groups.26 Physicians generally showed no difference in satisfaction with the consultation between QPL and control groups in all but 1 study. A closer examination of the patients' scores in the controlled studies revealed ceiling effects, whereby scores predominantly lay in the high range, with little between-subject variability. This raises question about the construct validity of the scales used to measure satisfaction within an oncology setting.
Recall of medical information by patients was measured in 3 studies via telephone interviews taken a short period after the consultation, where patients were asked to answer questions relating to medical information they had received in their past consultation. Two studies found no effects of the QPL on patient recall3, 21 and 1 study found greater recall in patients using a QPL only if they received endorsement of question-asking by the physician.8 This effect was greater in males than females.
Effects on Consultation Duration
Five studies examined effects on the duration of the consultation. Three studies found no duration effects,20, 21, 23 while 1 study found an average reduction in consultation duration by 5 minutes when doctors endorsed use of the QPL to their patients.8 Clayton et al.22 found a 7-minute increase in consultation duration for patients in palliative care, but this was believed to be due to the comprehensive nature of the QPL (ie, 112 items) as well as the inclusion of questions about end-of-life issues. Butow et al.21 found that younger patients, females, and outpatients spent more time asking more questions, and in response, doctors spent more time overall talking to these patients.
This review found 15 studies that examined the effectiveness of a simple-to-use QPL in empowering cancer patients to participate and ask relevant questions during their consultation. Seven out of 9 RCT studies and 5 out of 6 uncontrolled studies showed some improvement in patient-physician communication as measured objectively through the number of patient questions asked or subjectively through patient self-report, and no effects were found on patient psychological outcomes. Although the QPL did not consistently increase the total number of questions patients asked, it did empower patients in all RCT studies to ask specific questions, particularly regarding prognosis. This finding is in contrast to the lack of positive effects found in noncancer studies using a general QPL and suggests that cancer patients may have greater information needs and/or that a disease-specific QPL has greater utility and relevance for patients. In particular, the review shows that a disease-specific QPL is a useful tool for cancer patients, providing them with a means of directing the consultation toward issues that concern them.
The key finding in this review was that the QPL increased the likelihood that a patient would ask at least 1 question about prognosis, a topic that is typically avoided by both cancer patients and physicians during consultation.37–39 A recent study showed that cancer patients may instead broach these topics with anonymous hospital staff who they come into contact with.40 The et al.38 and Koedoot et al.39 suggest that uninvolved information brokers may be useful for discussing difficult topics with patients, and the QPL could be used during these interactions also. Nevertheless, the present findings show that a QPL is effective in providing patients with a means of bringing up prognostic issues with their physician, without causing adverse psychological effects. The influential factor may be that the QPL gives the patient, in a sense, permission to ask their physician these types of questions. This highlights the need for greater endorsement of question-asking and use of the QPL by physicians to make patients feel more comfortable with this process.38
A number of deficiencies in the literature are apparent from this review and are summarized in Table 4. For example, the optimal number of questions or topics in the QPL required to increase question-asking has not yet been determined. While Butow et al.21 used a short QPL of 11 questions and patients asked approximately half this number, some years later Brown et al.11 found an average of 15 questions were asked and the QPL contained 17 questions. Bruera et al.23 used a QPL containing 22 questions and patients asked 10 questions. However, in Clayton et al.,22 despite containing 112 questions, only an average of 15 questions were asked by patients who received extensive endorsement from their physician. This is a predictable effect, as not all questions will be directly relevant to patients at any given time. Furthermore, other factors such as the amount of information the physician provides, endorsement of QPL use, and time constraints will also affect question-asking. While we encourage patients to use a comprehensive, evidence-based QPL containing questions that may be variably relevant to patients at different stages of cancer, a shorter ‘impact’ QPL may also be useful to recently diagnosed patients overwhelmed by information, and should be the focus of future developments. A short QPL containing the most relevant questions cancer patients require prompting to ask to satisfy their informational needs may improve participation by helping to focus patient attention on pertinent questions.
A concerning finding was the lack of research examining the use of a QPL by non-English-speaking cancer patients. To our knowledge, there are no cancer-specific QPLs that have been translated to other languages, meaning a large contingent of patients misses out on the benefits. Any researchers attempting to translate existing QPLs for specific nationalities should also be mindful of the requirement to ensure questions are culturally sensitive, as large variations are consistently reported between cultures in attitudes toward cancer, participation in decision-making, and in discussing illness.41 Another gap in the research involves longitudinal studies. While most studies performed follow-up examinations to determine the effects of the QPL on patient psychological outcomes during the weeks following their first consultation, no studies examined the use of the QPL at later stages of illness or repeated use of the QPL. Studies show that patient information needs change dramatically during the progression of their illness4; therefore, future research should examine what kind of questions the QPL will prompt patients to ask at later stages of care or whether views on the QPL's utility evolve.
Few studies reported the views of doctors and other health professionals of the QPL. Effective implementation of a tool requires acceptance by staff, as well as patients, as they will typically be responsible for disseminating the tool to patients and encouraging them to use it. Of the few studies that examined physician views, the response overall was positive. Furthermore, as an important part of a patient's life and their care is their caregiver, further research is required to examine the utility of a QPL for use by these parties. One study reviewed provided a section in the QPL solely for caregivers and this proved to be effective.22
Some have argued that giving patients a checklist of questions constitutes a paternalistic approach and inhibits patients from putting forward their own agendas. Instead, it has been suggested that patients should write their own list of questions. However, past studies have found that patients from lower socioeconomic areas are less likely to write a list of questions42 and, when they do, they rarely touch on psychosocial issues.43 Furthermore, Wells et al.43 identified that questions are often poorly articulated by patients. Therefore, providing a structured, evidence-based list of questions may be more beneficial, with additional blank space provided if patients wish to add any other questions. Davison and Degner25, 28 attempted a progressive improvement of the QPL by using a computer program to collate and synthesize the informational needs of individual women with breast cancer, outputting a personal list of ‘prompt’ categories that patients could use to help them ask questions. While they failed to find any improvements in patient participation in the consultation, there may be utility in an individualized approach to developing questions, rather than using group-level evidence. The efficiency of using a computer program to generate questions in this way should be recognized and further developed in the future.
We acknowledge the limitations of this review, including the small number of studies that met our strict criteria. Most studies occurred in the last decade and almost half the studies identified were from our own research group. However, the increasing use of QPLs by researchers and health professionals with cancer patients both in research settings and routine care calls for a review of the findings to date. Of note also is that the patients in the review were generally older than 50 years old, had completed secondary school, and were mostly at early stages of their disease. These characteristics may be associated with particular informational needs and should be considered when examining the reported findings.
Evidence-based QPLs that have been developed from focus groups and interviews with cancer patients and specialists are already available for use. Although the QPL can be given to patients at any stage of illness, ideally patients should receive it when they are first diagnosed so that they can continue to use this and other versions throughout various stages of care. We recommend the QPL be disseminated before a patient's appointment to give them enough time to read and consider the questions. Table 5 presents an evidence-based QPL that may be used with patients seeing a medical or radiation oncologist. This and other QPLs for cancer patients at different stages of care, including questions for cancer patients seeing a surgeon or a palliative-care team, are available in pdf format for free download from the following website: http://www.psych.usyd.edu.au/mpru/communication_tools.html. It should, however, be noted that the provided QPLs are only written in English and may not be sensitive to some cultures' views of cancer.
|Asking Questions Can Help||* How likely is it that the cancer will spread to other parts of my body without any more treatment?||* Are there any advantages/disadvantages of the private versus public health system?|
|When you see your medical or radiation oncologist today you may have questions and concerns. Often these are forgotten in the heat of the moment, only to be remembered later. We have compiled a list of questions to help you to get the information you want from your oncologist about your illness, and possible treatments. These questions have been developed after discussion with many people. Your oncologist is keen to answer any questions you may have, either now or at future consultations. You and your family may choose to use this list at any time.||* How likely is it that the cancer will spread to other parts of my body if I do have more treatment?||Clinical Trials|
|We suggest you tick the questions that you want to ask and write down any that you may think of which are not listed. In many cases, your oncologist will have answered the questions without you even asking, and in that instance this pamphlet can serve as a checklist.||* What is the expected survival for people with my type of cancer?||* What are clinical trials? Are there any that might be relevant for me?|
|How and When to Ask Questions||* How likely is it that the treatment will improve my symptoms? Is it worth going through?||* Will I be treated any differently if I enroll in a trial?|
|* Do you have time today to discuss my questions?||* Will the treatment or illness reduce my sexual drive?||Preparing for Treatment|
|* Can I ask you to explain any words that I am not familiar with?||Optimal Care||* What are clinical trials? Are there any that might be relevant for me?|
|Diagnosis||* Do you specialise in treating my type of cancer?||* Will I be treated any differently if I enroll in a trial?|
|* What kind of cancer do I have?||* How well established is the treatment you are recommending?||Preparing for Treatment|
|* Where is the cancer at the moment? Has it spread to other parts of my body?||* Are there guidelines on how to treat my cancer?||* Is there anything that I can do before or after my treatment that might make it more effective, e.g. diet, work, exercise, etc?|
|* How common is my cancer?||* Is there another specialist who treats this type of cancer that you recommend for a second opinion?||* What are the do's and don'ts while having treatment?|
|Tests||The Multidisciplinary Team||* What problems should I look out for and who do I contact if they occur?|
|* Are there any further tests that I need to have? What will they tell us? Will they confirm my diagnosis?||* Do you work in a multi-disciplinary team and what does this mean?||* Are there long-term side effects from the treatment?|
|* What will I experience when having the test/s?||* Can you explain the advantages of a team approach?||* Will I need any additional treatment after this? If so, what might that be?|
|Prognosis||* How do you all communicate with each other and me?||* What is my long-term follow up plan?|
|* How bad is this cancer and what is it going to mean for me?||* Who will be in charge of my care?||Costs|
|* What symptoms will the cancer cause?||* What do I do if I get conflicting information?||* What will be the costs throughout my treatment, eg, medication, chemotherapy, etc?|
|* What is the aim of the treatment? To cure the cancer or to control it and manage symptoms?||Treatment Information and Options||* Am I eligible for any benefits if I cannot work?|
|* Is the treatment going to improve my chance of survival?||Options||Support Information|
|* Is it necessary to have treatment right now?||* What information is available about my cancer and its treatment, e.g. books, videos, websites, etc?|
|* If so, do I have a choice of treatments?||* Are there any complementary therapies that you believe may be helpful or that are known to be bad for me?|
|* What are the pros and cons of each treatment option?||* Is there someone I can talk to who has been through this treatment?|
|* What can I expect if I decide not to have treatment?||* Are there services/support groups that can help me and my family dealwith this illness?|
|* How much time do I have to think about this? Do you need my decision today?||Write down any other questions you may have in the space below: …………………………………………………………………… …………………………………………………………………… ……………………………………………………………………|
|* What is your opinion about the best treatment for me?||©Medical Psychology Research Unit, University of Sydney.|
|* What exactly will be done during the treatment and how will it affect me? When are these effects likely to happen?|
|* What is the treatment schedule, e.g. how many treatments will I have, how often, and for how long will I have treatment?|
|* Where will I have the treatment?|
For enhanced patient benefits, it is important that physicians help patients feel comfortable in the consultation to ask questions. We suggest physicians use the following standard endorsement statement developed by Clayton et al.23:
“We think it is very important that you feel that you have all the information that you want: asking questions is a good way of ensuring that we cover everything that is important to you. Many people tell me that they get home and realize that they forgot to ask an important question. So I want you to feel free to ask anything you want, even if you feel that it is a silly or embarrassing question. So why don't we go through any questions that you have written down or circled on the brochure.”
Together, the findings of the review suggest that the QPL is a useful tool that helps patients to shift the focus of the consultation and obtain answers to the information they seek by asking specific questions. It is simple to use, inexpensive to produce, and may help mitigate the rising cost of cancer care by arming patients with a means of better informing themselves of more convenient treatments. To ensure widespread adoption of the QPL as a fixed element of routine cancer care, the next step is to determine the most effective method of disseminating the tool to patients.44 Implementation research should identify barriers to successful uptake within particular localities and test different dissemination methods for optimal uptake. This will provide an indication of the feasibility and acceptability of QPLs in routine cancer care.
- 34Interventions before consultations for helping patients address their information needs. Cochrane Database System Rev. 2003; 4: CD004565., , , et al.
- 36Cancer patients and the internet: a randomized controlled trial (RCT) evaluating an intervention to facilitate physician and patient information exchange from the internet (I). J Clin Oncol. 2004; 22: 6139., , , .