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Randomized Controlled Trial of a Prompt List to Help Advanced Cancer Patients and Their Caregivers to Ask Questions About Prognosis and End-of-Life Care

Josephine M. Clayton, Phyllis N. Butow, Martin H.N. Tattersall, Rhonda J. Devine, Judy M. Simpson, Ghauri Aggarwal, Katherine J. Clark, David C. Currow, Louise M. Elliott, Judith Lacey, Philip G. Lee, Michael A. Noel

From the Medical Psychology Research Unit, Department of Medicine and School of Psychology, and the School of Public Health, University of Sydney; Sacred Heart, Concord, Royal Prince Alfred, Liverpool, Calvary, Westmead, and Nepean Hospital Palliative Care Services, Sydney, New South Wales; and Southern Adelaide Palliative Services, Adelaide, South Australia, Australia

Address reprint requests to Josephine Clayton, FRACP, PhD, Medical Psychology Research Unit, Blackburn Building D06, University of Sydney, New South Wales 2006, Australia; e-mail: jclayton{at}med.usyd.edu.au

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
PURPOSE: To determine whether provision of a question prompt list (QPL) influences advanced cancer patients’/caregivers’ questions and discussion of topics relevant to end-of-life care during consultations with a palliative care (PC) physician.

PATIENTS AND METHODS: This randomized controlled trial included patients randomly assigned to standard consultation or provision of QPL before consultation, with endorsement of the QPL by the physician during the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC services were invited to participate. Consultations were audiotaped, transcribed, and analyzed by blinded coders; patients completed questionnaires before, within 24 hours, and 3 weeks after the consultation.

RESULTS: A total of 174 patients participated (92 QPL, 82 control). Compared with controls, QPL patients and caregivers asked twice as many questions (for patients, ratio, 2.3; 95% CI, 1.7 to 3.2; P < .0001), and patients discussed 23% more issues covered by the QPL (95% CI, 11% to 37%; P < .0001). QPL patients asked more prognostic questions (ratio, 2.3; 95% CI, 1.3 to 4.0; P = .004) and discussed more prognostic (ratio, 1.43; 95% CI, 1.1 to 1.8, P = .003) and end-of-life issues (30% v 10%; P = .001). Fewer QPL patients had unmet information needs about the future (²₁ = 4.14; P = .04), which was the area of greatest unmet information need. QPL consultations (average, 38 minutes) were longer (P = .002) than controls (average, 31 minutes). No differences between groups were observed in anxiety or patient/physician satisfaction.

CONCLUSION: Providing a QPL and physician endorsement of its use assists terminally ill cancer patients and their caregivers to ask questions and promotes discussion about prognosis and end-of-life issues, without creating patient anxiety or impairing satisfaction.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
Patients and families have identified good communication as a critical aspect of medical care at the end of life.^1,2 By enabling patients to ask questions that concern them, communication may be improved.^2,3 Formulating questions about sensitive topics, such as prognosis and end-of-life issues, without prompting is difficult for some patients.^4,5

A question prompt list (QPL) is a structured list of questions that serves as a prompt for patients to consider questions to ask their physician. QPLs have been shown to enhance patient participation during initial oncology consultations.^6-9 We developed and piloted a QPL for advanced cancer patients and their caregivers who were referred for palliative care (PC).¹⁰ A randomized controlled trial was designed to evaluate the effect of providing the QPL to patients before PC consultations.

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
Setting
Specialist PC services are well established in Australia,¹¹ comprising teams of medical, nursing, and allied health professionals. PC services provide consultations in tertiary referral and district hospitals, inpatient PC units, and in homes, hostels, and nursing homes. Approximately 90% of referred patients have advanced cancer,¹² and many are still receiving disease modifying treatment (eg, chemotherapy) with palliative intent.¹²

Participants and Protocol
Fifteen PC physicians from nine PC services in two Australian states participated. Consecutive eligible patients from each participating physician were invited to participate. The trial procedure, patient eligibility criteria, and follow-up are outlined in Figure 1. Almost all patients were recruited from outpatient PC clinics. Based on feedback from stakeholders regarding optimal timing of QPL provision,¹⁰ enrollment was within three consultations from initial contact with the PC physician. After obtaining written consent and baseline data, patients were randomly assigned to receive the QPL 20 to 30 minutes before their consultation with a PC physician or have a routine consultation. All patients’ consultations with the PC physician were audiotaped, transcribed, and coded. The study was approved by the ethics committees of all participating institutions.

View larger version (46K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 1. Outline of randomized controlled trial evaluating a question prompt list (QPL) for palliative care (PC) patients. RCT, randomized controlled trial.

Coding of Audiotaped Consultations
An extensive manual and coding sheet was developed ^6-9 to enable standardization of the coding procedure. Physician endorsement of the QPL was coded as either absent, basic, or extended. Basic meant the physician referred to the QPL booklet and asked if the patient had any questions from it. Extended meant the physician also emphasized the importance of asking questions and having information needs met and actively reviewed questions the patient or caregiver raised from the QPL.

Patient/caregiver questions, concerns, and items discussed, were tallied and categorized according to categories covered by the QPL. A question was a direct request for information. A concern was a patient or caregiver statement inviting a response from the physician. Items discussed (85 issues covered by questions in the QPL, whether or not prompted by a patient/caregiver question/concern), plus patient and caregiver questions/concerns were coded and tallied for each of the nine topics (Table 1) and in total.

Patient Questionnaires
Measures included. Preference for information was covered by a question from the Cassileth Information Styles Questionnaire¹³ measuring amount of detail preferred (5-point Likert scale). Patient anxiety was measured by the Spielberger State Anxiety Inventory (scores range from 20 to 80; higher values reflect more anxiety).¹⁴ Satisfaction with the consultation was measured by 25 items adapted from Roter¹⁵ and Korsch et al¹⁶ (scores range from 25 to 125; higher scores indicate greater satisfaction). Achievement of information preferences was measured by one question adapted from the Information Styles Questionnaire.¹³ Patients were also asked whether the amount of information was way too much, a little too much, just right, not quite enough, or not nearly enough. Achievement of 11 specific information needs was assessed using a specifically designed questionnaire based on a literature review and our previous results.¹⁰ Totals out of 11 were tallied for items not discussed, about which they did not receive enough information, and about which they received too much information. Satisfaction with QPL was measured by the previously developed Likert scales^6-8 on which patients rated the QPL for its helpfulness and impact on anxiety and question-asking for themselves and their family.

Outcome Measures
The primary outcome measure was total number of patient questions during the consultation. Other measures included: total numbers of items discussed, patient concerns and caregiver questions/concerns, number of items discussed and patient/caregiver questions/concerns about nine individual topics covered by the QPL, achievement of patient information preferences, patient satisfaction with the consultation, patient anxiety, physician satisfaction with communication during the consultation, and consultation duration.

Sample Size Calculations
In our trial of patients seeing an oncologist for the first time, the control group asked an average of 5.5 questions (standard deviation, 4.5).⁸ We estimated that 80 patients were required per arm to give 80% power to detect as significant at the two-sided 5% level an increase to 7.5 questions.

Random Assignment
Patients were individually randomly assigned and stratified by physician immediately after written consent was provided and baseline data were collected. Random permuted blocks of 10 patients were constructed using a random number table (by a research assistant not involved in patient recruitment). Allocation was concealed using sequentially numbered opaque, sealed envelopes.

Statistical Analyses
Analysis was by intention to treat, using all available data from randomly assigned patients according to group assignment. Data were analyzed using Statistical Package for the Social Sciences version 12 (SPSS Inc, Chicago, Illinois) and SAS version 8 (SAS Institute, Cary, NC). All outcomes were analyzed for group differences using a mixed model with physician as a random effect, to allow for comparison of QPL/control consultations by the same physician. Most outcomes were counts of questions/concerns/items, which were analyzed using the negative binomial model (Proc NLMixed, SAS); the difference between the means is estimated as a ratio (multiplicative effect) with its 95% CI. When counts of questions/concerns/items were low for a topic, outcomes were analyzed as proportions of consultations during which a question/concern was raised or an item was discussed for that topic. Because the physician effect was found to be negligible for these binary variables, proportions in the two groups were compared using the ² or Fisher’s exact test, as appropriate. Continuous variables were analyzed using the normal distribution (Proc Mixed, SAS). Consultation length required logarithmic transformation. Missing values on the State Anxiety Inventory/patient satisfaction questionnaires were replaced with the mean score (provided 10% responses missing).

For all continuous and count variables, means are presented that are adjusted for the physician effect. Important baseline variables that were not evenly matched between groups (difference of 5% or more), including educational level (tertiary v nontertiary education), occupation (professional v nonprofessional), caregiver presence and timing of consultation with the PC physician (first/second/third consultation), were added as covariates to the negative binomial model to assess for confounding of the effect of the QPL on the primary outcome measure, but no confounding effect was found. Among QPL patients, the effect of strength of physician endorsement of the QPL on total patient questions was assessed using the negative binomial model (Proc Genmod, SAS).

Inter-rater and intrarater reliability of the consultation coding system was analyzed using intraclass correlation coefficient for count data (logarithmic transformation was performed first if heavily skewed) and statistic for binary data.

	RESULTS

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Participant Flow, Assignment, and Follow-Up
From October 2002 to August 2004, 196 eligible patients were identified and invited to participate in the study and 174 participated (Fig 2). Data for 170 (90 in QPL group, 80 controls) were available for the primary analysis. The 24-hour and 3-week follow-up questionnaires were completed by 151 (87%) and 107 (62%) patients, respectively. The final questionnaire was completed by 13 of 15 physicians. Table 2 shows that patient baseline characteristics were similar in both groups. All participants had advanced cancer.

View larger version (53K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 2. Flow of participants through the trial. (*) The difference in numbers of patients assigned to the two groups arose by chance due to the randomization method (stratified by physician in block of 10). QPL, question prompt list.

Patient/Caregiver Questions and Concerns, Topics Discussed, and Consultation Length
Patients in the QPL group asked 2.31 times (95% CI, 1.68 to 3.18 times) more questions (direct requests for information) during the consultation than controls (P < .0001; Table 2), specifically about four of nine topics covered by the QPL, including prognosis. Although there were no significant differences between groups in concerns (statement inviting a response from the physician) raised about individual topics or in total, the total number of issues raised by patients, expressed as either a question or a concern, was significantly increased from an adjusted mean of 12.7 items in controls to 17.6 items in the QPL group (ratio, 1.39; 95% CI, 1.17 to 1.64; t₁₅₄ = 3.85; P = .0002).

Caregivers present in the QPL group asked 2.11 (95% CI, 1.40 to 3.18) times more questions than controls (P = .0005), specifically about three of nine topics, including prognosis and caregiver issues (Table 2). There was no difference between groups in the overall number of concerns raised by caregivers. However, caregivers in the QPL group expressed significantly more concerns about lifestyle and quality of life (t₁₀₇ = 1.98; P = .05), and end-of-life issues (Fisher’s exact test, P = .04). The total number of issues raised by caregivers, expressed as either a question or a concern, was significantly increased from an adjusted mean of 6.6 in controls to 9.9 in the QPL group (ratio, 1.49; 95% CI, 1.11 to 2.00; t₁₀₇ = 2.71; P = .008).

Overall 23% (95% CI, 11% to 37%) more items were discussed during consultations with QPL patients than controls (P < .0001). Seven of nine topics were discussed significantly more often in the QPL group (Table 3).

Achievement of Information Needs Within 24 Hours of Consultation
There were no significant differences in overall measures of achievement of information needs. Patients in the QPL group had less unmet need about eight of 11 individual information items. However, this was significant only for "what to expect in the future" (11 of 76 [14%] QPL v 21 of 75 [28%] controls; ²₁ = 4.14; P = .04), which was the highest unmet information need overall (21%). Patients in the QPL group perceived that individual items were discussed during the consultation more often for eight of 11 items, but this was significant only for "what to expect in the future" (64 of 76 [84%] QPL v 51 of 75 [68%] controls; t₁₃₅ = 2.42; P = .02), and "information regarding available help and support" (74 of 76 [97%] QPL v 64 of 75 [85%] controls; t₁₃₅ = 2.47; P = .01).

Achievement of Information Needs at 3-Week Follow-Up
Ninety-six percent (54 of 56) of QPL patients said they had discussed "what is happening to my illness" with the PC team versus 84% (43 of 51) of controls (Fisher’s exact test, P = .05). There were no significant differences between groups in other individual items or total scores out of 11 for patients’ perception regarding whether the topics were discussed, unmet information need, or too much information.

Patient Anxiety and Patient/Clinician Satisfaction
Patient anxiety scores were similar in both groups at 24 hours (mean, 40.3 in both groups; 95% CI for difference, –2.7 to 2.7) and 3-week follow-up (QPL mean, 38.7 v control mean, 37.5; 95% CI for difference, –5.2 to 2.8); both values were adjusted for preconsultation scores. Overall, patients were highly satisfied with the consultation in both groups (mean score out of 125: QPL, 110.1 v control, 110.3; 95% CI for difference, –3.4 to 2.9). There also was no significant difference between groups in physician satisfaction with the communication during each consultation.

Effect of Physician Endorsement of QPL
The total number of patient questions increased with the degree of physician endorsement of the QPL (²₂ = 34.36; P < .0001). When the physician’s endorsement was rated as basic (n = 31) or extensive (n = 44), patients asked 1.6 or 5.8 times more questions than when the physician did not endorse the QPL at all (n = 15). The adjusted mean number of patient questions without physician endorsement in the intervention group was similar to that of controls (2.6 v 2.3, respectively).

Participants’ Views of the QPL
Patients were very positive about the QPL (Table 4) and most had read it again by the 3-week follow-up. Physicians indicated that the QPL did not interfere with the flow of 87 (95%) of 92 of consultations. In 42 (46%) of 92 consultations, the physician believed the QPL made it easier for either the patient or themselves to raise certain issues. In the final questionnaire, 12 of 13 physicians believed the QPL was a useful tool and would use it for future patients (one physician did not answer these questions). However, five of 13 physicians stated they had some reservations; namely, fear that the patient may not be ready to discuss end-of-life issues, and concern that it may put the onus on the patient to ask questions rather than on the physician to respond to patients’ cues.

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

The QPL promoted caregiver questions and discussion about caregiver issues. One fourth of caregivers in the QPL group asked at least one question but none in the control group asked any questions about caregiver issues. The importance of and distinct information needs of caregivers of terminally ill cancer patients^21,22 are often unmet.^23,24

"What to expect in the future" was the greatest unmet patient information need, and this was reduced by the QPL. Overall, the QPL did not adversely affect patient anxiety or satisfaction or clinician satisfaction. The QPL was welcomed and deemed useful by almost all patients and their caregivers.

The QPL consultations were longer by a mean of 7 minutes. It is reassuring that physician participants reported they were not concerned by the longer consultations, because important issues were addressed in response to the QPL. It is also possible that subsequent consultations may be shorter because more issues have already been discussed. A shorter version of the QPL may have shortened the consultation, as found in an oncology QPL study.⁸

Patient question asking in the QPL group increased with the degree of physician endorsement of the QPL. Without physician endorsement, the QPL had limited impact on patient questions—a finding consistent with effects of a QPL for oncology consultations.¹⁰ It is likely that the physicians’ own communication skills are influential in addressing any issues raised by the QPL.²⁵

Provision of written examples of questions (QPL) to patients in combination with physician encouragement of question asking may be expected intuitively to have an additive effect on question asking compared with physician encouragement of question asking alone. Certainly qualitative feedback from our current and pilot¹⁰ studies suggests that patients need assistance in articulating questions in addition to having permission to ask questions from the physician. It is not known whether physician endorsement of question asking alone may have had similar effects to provision of the QPL plus physician endorsement.

The QPL did not affect achievement of patient information need at the 3-week follow-up. Possibly, the QPL had only a short-term benefit. However, during the 3-week follow-up period, many patients repeatedly reviewed the QPL but were not seen again by the PC physician. Perhaps the QPL stimulates patients’ desire for information that is not adequately addressed unless there is ongoing review by the physician and endorsement of the QPL.

Provision of a QPL to patients seeing an oncologist has been found to promote patient questions about prognosis in four previous studies,^6-9 but these QPLs did not include questions about end-of-life issues.^6-9 The QPL used here was longer, covered a wider range of issues, and was developed using a much more extensive consultation and feedback process from patients, caregivers, and health care professionals.¹⁰ Previous QPL studies have not evaluated effects on caregiver participation. The number of questions asked by the control group (adjusted mean, 2.3) in the current patient population was considerably smaller than in the control group in studies with patients seeing an oncologist for the first time (mean/median, 5.5 to 9).^6-9 Perhaps at the time of referral to PC, patients feel overwhelmed and are therefore somewhat reticent to ask questions. Our results suggest that with provision and endorsement of the QPL, such patients ask more questions, which then generates discussion without adversely affecting psychological outcomes.

The reason QPLs have been shown consistently to increase patient questions about prognosis is unclear. Perhaps the QPL empowers patients and their caregivers to ask questions about sensitive areas, such as prognosis. In addition, patients may value assistance in articulating questions about the future. Furthermore, physicians may not commonly raise the topic of prognosis, at least during their initial consultation.

This was an unblinded study, given that previous research⁸ suggested that endorsement of the QPL by the physician increased the benefits of the QPL. Only one early consultation with the PC physician was audiotaped and evaluated after provision of the QPL. The impact of the use of the QPL over time needs to be examined. Only English-speaking patients were sampled, and although this was a multicenter study, the sample included only patients with advanced cancer in urban settings who were well enough to attend outpatient clinics. Therefore, the results may not be generalizable to other cultural groups, patients with other advanced progressive illnesses, those not well enough to attend an outpatient clinic, patients being reviewed by physicians other than those practicing in specialist PC, and patients being reviewed by nonphysician members of the PC team.

This QPL is a useful tool for promoting patient and caregiver participation and stimulating discussion during palliative medicine consultations, provided the physician endorses and refers to it during the consultation. It is plausible that provision of this QPL may have broad application for facilitating patient/caregiver and physician communication about issues pertinent to palliative care. Modification of the QPL for specific settings, such as for particular cultural groups or for parents of dying children, would require consultation with stakeholders and piloting to ensure the content is culturally sensitive and addresses patient and/or caregiver information needs. For busy oncologists, an abbreviated version of this QPL may be useful for facilitating end-of-life discussions with advanced-cancer patients/caregivers without adding to consultation time. Research would be needed to ascertain the appropriate number and content of questions to include, and to evaluate its use in clinical practice.

	Authors’ Disclosures of Potential Conflicts of Interest

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
The authors indicated no potential conflicts of interest.

	Author Contributions

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
Conception and design: Josephine M. Clayton, Phyllis N. Butow, Martin H.N. Tattersall

Administrative support: Josephine M. Clayton, Martin H.N. Tattersall

Provision of study materials or patients: Josephine M. Clayton, Ghauri Aggarwal, Katherine J. Clark, David C. Currow, Louise M. Elliott, Judith Lacey, Philip G. Lee, Michael A. Noel

Collection and assembly of data: Josephine M. Clayton, Rhonda J. Devine

Data analysis and interpretation: Josephine M. Clayton, Phyllis N. Butow, Martin H.N. Tattersall, Rhonda J. Devine, Judy M. Simpson

Manuscript writing: Josephine M. Clayton

Final approval of manuscript: Josephine M. Clayton, Phyllis N. Butow, Martin H.N. Tattersall, Rhonda J. Devine, Judy M. Simpson, Ghauri Aggarwal, Katherine J. Clark, David C. Currow, Louise M. Elliott, Judith Lacey, Philip G. Lee, Michael A. Noel

Other: Josephine M. Clayton, Phyllis N. Butow, Martin H.N. Tattersall, Judy M. Simpson, Ghauri Aggarwal, Katherine J. Clark, David C. Currow, Louise M. Elliott, Judith Lacey, Philip G. Lee, Michael A. Noel

	Appendix

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
Sample Questions From the QPL Booklet, Asking Questions Can Help: An Aid for People Seeing the Palliative Care Team
A print-ready version of the full QPL booklet can be downloaded from http://www.psych.usyd.edu.au/mpru/communication_tools.html. The QPL booklet was available only online once this study was completed.

The QPL booklet contains 112 questions (Clayton J, Butow P, Tattersall M, et al: J Clin Oncol 22:4401-4409, 2004) grouped into nine topics: about the palliative care service and team, physical symptoms, treatment, lifestyle and quality of life, my illness and what to expect in the future, support, if you are concerned about your professional care, for caregivers, and end-of-life issues. Some sample questions for caregivers and end-of-life issues are shown below.

For caregivers (page 13 of the booklet). If you have a carer, the following questions may be useful for them. Some of the questions listed here may not be relevant to your stage of illness.

• What skills will I need as a carer?
  
• Do you think I can look after my partner, relative, or friend at home?
  
• Can I get help if I cannot manage?
  
• What can I do if I am not coping?
  
• How can I best support the person that I am caring for?
  
• What should I do if my partner, relative, or friend won’t eat very much?
  
• If my partner, relative, or friend eats more, will this make them live longer?
  
• How can I assist health professionals to talk to my partner, relative, or friend in a way that respects their personality/culture?
  
• Who can I talk to if I am concerned about the care my partner, relative, or friend is receiving?
  

End of life issues (pages 14 to 15 of the booklet). The following questions may not be relevant to you or your stage of illness. Please do not feel you have to read this section if you don’t want to, but there may come a time in the future when you want to ask some of these questions.

Questions that I may like to ask:

• How do I get my affairs in order and write a will?
  
• Who can I talk to about the medical care that I want in the future when I am no longer able to speak for myself?
  
• How can I cope when I get sicker and can no longer care for myself?
  
• How can I cope with becoming more dependent on others?
  
• What can I expect in the last days of my life?
  
• Will you be able to tell me when it is getting close to the time I will die?
  
• What happens if I go into a coma?
  
• Is it feasible for me to die at home rather than in the palliative care ward or hospital? Questions that my carer or family may like to ask:
  
• If I cannot manage to look after my partner, relative, or friend at home, how can we come to terms with this?
  
• What should I say when the person that I am caring for asks, "am I dying"?
  
• Will you be able to tell me when it is getting close to the time that he/she will die?
  
• When should I call the rest of the family? What should I say to them? Could you speak with them?
  
• How do I know when he/she has died?
  
• What happens after he/she dies (eg, what happens to their body, how do we arrange the funeral)?
  
• What support is available for the family after the person dies?
  

	ACKNOWLEDGMENTS

 
We are grateful to all the patient and caregiver participants for giving their time and energy to this study, and to the staff of the involved PC services who assisted with patient identification. We thank the palliative care physicians who participated including Drs Richard Chye, Neil Cooney, Jan Maree Davis, Paul Glare, Sally Greenaway, Helen Herz, Sara Rendo, and Meg Sands. We also thank the research nurses, Debbie Malcolm, Jenny Bunn, Christine Lillie, and Belinda Fazekis, who assisted with patient recruitment and data collection, Judy Hood who transcribed the audiotapes, and Heather Shepherd who assisted with piloting the audiotape coding system.

	NOTES

 
Supported by an Australian National Health and Medical Research Council Medical Postgraduate Scholarship and a Career Development and Support Fellowship from the Cancer Institute, New South Wales, Australia (J.M.C.).

Presented in part at the 8th Australian Palliative Care Conference, August 30-September 2, 2005, Sydney, Australia; and the Clinical Oncological Society of Australia 32nd Annual Scientific Meeting, November 16-18, 2005, Brisbane, Australia.

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION Authors' Disclosures of... Author Contributions Appendix REFERENCES

 
1. Steinhauser KE, Clipp EC, McNeilly M, et al: In search of a good death: Observations of patients, families, and providers. Ann Intern Med 132:825-832, 2000[Abstract/Free Full Text]

2. Wenrich MD, Curtis JR, Shannon SE, et al: Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med 161:868-874, 2001[Abstract/Free Full Text]

3. Street RL: Information-giving in medical consultations: The influence of patients’ communicative styles and personal characteristics. Soc Sci Med 32:541-548, 1991[CrossRef][Medline]

4. Arora NK: Interacting with cancer patients: The significance of physicians’ communication behaviour. Soc Sci Med 57:791-806, 2003[CrossRef][Medline]

5. Heaven CM, Maguire P: Disclosure of concerns by hospice patients and their identification by nurses. Palliat Med 11:283-290, 1997[Abstract/Free Full Text]

6. Butow PN, Dunn SM, Tattersall MH, et al: Patient participation in the cancer consultation: Evaluation of a question prompt sheet. Ann Oncol 5:199-204, 1994[Abstract/Free Full Text]

7. Brown R, Butow PN, Boyer MJ, et al: Promoting patient participation in the cancer consultation: Evaluation of a prompt sheet and coaching in question-asking. Br J Cancer 80:242-248, 1999[CrossRef][Medline]

8. Brown RF, Butow PN, Dunn S: M, et al: Promoting patient participation and shortening cancer consultations: A randomised trial. Br J Cancer 85:273-279, 2001[CrossRef][Medline]

9. Butow P, Devine R, Boyer M, et al: Cancer consultation preparation package: Changing patients but not physicians is not enough. J Clin Oncol 22:4401-4409, 2004[Abstract/Free Full Text]

10. Clayton J, Butow P, Tattersall M, et al: Asking questions can help: Development and preliminary evaluation of a question prompt list for palliative care patients. Br J Cancer 89:2069-2077, 2003[CrossRef][Medline]

11. Maddocks I: Palliative care in the 21st century. Med J Aust 179:S4-S5, 2003 (suppl 6)[Medline]

12. Currow D: Australia: State of palliative service provision. J Pain Symptom Manage 24:170-172, 2002[CrossRef][Medline]

13. Cassileth BR, Zupkis RV, Sutton-Smith K, et al: Information and participation preferences among cancer patients. Ann Intern Med 92:832-836, 1980[CrossRef][Medline]

14. Spielberger CD: Manual for the State-Trait Anxiety Inventory (form Y). Palo Alto, CA, Consulting Psychologist Press, 1983

15. Roter D: Patient participation in the patient-provider interaction: The effects of patient question asking on the quality of interaction satisfaction and compliance. Health Educ Monogr 5:281-315, 1977[Medline]

16. Korsch BM, Gozzi EK, Francis V: Gaps in doctor-patient communication: Doctor patient interaction and patient satisfaction. Pediatrics 42:855-870, 1968[Abstract/Free Full Text]

17. Jefford M, Tattersall MH: Informing and involving cancer patients in their own care. Lancet Oncol 3:629-637, 2002[CrossRef][Medline]

18. Butow PN, Brown RF, Cogar S, et al: Oncologists’ reactions to cancer patients’ verbal cues. Psychooncology 11:47-58, 2002[CrossRef][Medline]

19. The SUPPORT Principal Investigators: A controlled trial to improve care for the seriously ill hospitalised patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT). JAMA 274:1591-1598, 1995[Abstract/Free Full Text]

20. Hanson LC, Tulsky JA, Marion D: Can clinical interventions change care at the end of life? Ann Intern Med 126:381-388, 1997[Abstract/Free Full Text]

21. Clayton JM, Butow PN, Tattersall MHN: The needs of terminally ill cancer patients versus those of their caregivers for information regarding prognosis and end-of-life issues. Cancer 103:1957-1964, 2005[CrossRef][Medline]

22. Kirk P, Kirk I, Kristjanson LJ: What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328:1343-1347, 2004[Abstract/Free Full Text]

23. Jones RVH, Hansford J, Fiske J: Death from cancer at home: The carers’ perspective. BMJ 306:249-250, 1993[Abstract/Free Full Text]

24. Merrouche Y, Freyer G, Saltel P, et al: Quality of final care for terminal cancer patients in a comprehensive cancer centre from the point of view of patients’ families. Support Care Cancer 4:163-168, 1996[CrossRef][Medline]

25. Maguire P, Pitceathly C: Key communication skills and how to acquire them. BMJ 325:697-700, 2002[Free Full Text]

Submitted March 28, 2006; accepted September 18, 2006.

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