A simple, one-page question prompt list addressing cancer treatment, prognosis, quality of life, and end-of-life issues was well received by new oncology patients and did not affect patient anxiety or physician workflow.
Abstract
Purpose:
Oncologists and patients often avoid discussing prognosis, treatment failure, and end-of-life planning. Thus, many patients still overestimate their prognosis and possibility of cure, impairing decision making. We piloted a question prompt list (QPL) covering these issues to determine whether it would affect patient anxiety and how it would be used and received by new oncology patients.
Materials and Methods:
A one-page checklist of common questions surrounding cancer care, quality of life, and end of life was created from previous instruments. A total of 30 patients with advanced or metastatic head and neck cancer were recruited from outpatient clinics. Patients received the QPL before their initial consultation. Patient anxiety, satisfaction, and information/decision-making preferences were assessed using validated instruments. Patient opinions regarding the QPL were solicited through Likert-scale items.
Results:
During their visit, 27 patients (90%) used the QPL, but notably, none shared it directly with their oncologist. Most participants felt that the QPL was relevant and helpful (90%) and recommended that more physicians use this sort of list (90%) while disagreeing that the QPL made them feel anxious (80%). Generally, participants were highly satisfied with the consultation, and their anxiety decreased during the visit (P < .005).
Conclusion:
A simple, one-page QPL addressing cancer treatment, prognosis, quality of life, and end-of-life issues was well received by new oncology patients and did not affect patient anxiety or physician workflow. Follow-up studies will determine whether use of the QPL increases knowledge, facilitates decision making, and improves advance-care planning.
Introduction
Communication between oncologists and their patients is often poor, especially regarding difficult topics such as prognosis, treatment failure, and end-of-life planning. A vast majority of patients with cancer prefer to know their accurate prognosis (even in event of terminal illness) and would like to receive information on how to live comfortably and free of pain in their final days.1,2 Most patients with cancer never have a conversation with their oncologist about dying as a result of their cancer,3 and conversely, we also do not know how many people underestimate their prognosis or treatment options.4 However, despite these concerns, patients often simply do not raise these issues with their physicians.5 As a result, even in recent studies, most patients with advanced cancer (up to 81% of those with colorectal cancer) continue to report inaccurate beliefs about the severity of their prognosis and the possibility of cure.6 These misunderstandings compromise patients' ability to make informed medical decisions that are aligned with their life preferences.
The cause of this poor communication seems to be double sided; despite their mutual preference for honesty and clarity in medical decision making, both patients and their oncologists report feeling anxious and unwilling to speak to the other party about end-of-life issues, for fear of causing additional stress or straining the patient-provider relationship.7 Macroeconomic efforts incentivizing physicians to initiate this dialogue have failed at the political level, underscoring a dire need for low-cost, patient-centered methods to normalize and facilitate conversation on these sensitive issues.8
Communication aids of varying length and subject matter have been previously tested in the setting of cancer care. In 2001, Brown et al9 examined the use of a 17-question list during a cancer consultation. Then, in 2007, Clayton et al10 conducted a randomized trial using a longer, 112-question brochure in Australian community–based palliative care practices. Both studies suggested that question prompt lists (QPLs) would improve patient-provider interaction, encouraging the asking of questions by patients without increasing their anxiety. Despite these findings, such a tool has not been established as the standard of care at any major US medical center. Furthermore, the QPLs used in these studies did not focus on advanced cancer or end-of-life issues9 or were not targeted to new oncology patients, outside of the palliative care setting.10
To build on their work, we created a one-page QPL, adapting the questions used in prior studies.9,10 This QPL presents issues related to cancer treatment, quality of life, prognosis, and end-of-life issues. It attempts to normalize and reduce the anxiety associated with these issues and encourages patients to discuss them with their oncologist. This tool represents a simple, inexpensive, readily replicable intervention that can be widely adopted if proven beneficial to patient care.
In this pilot study, we assessed the feasibility of the QPL for use in initial oncology consultations for patients with advanced head and neck cancer. Specifically, we examined whether this tool would affect patient anxiety or satisfaction and whether it would be well received by patients and health care providers.
Materials and Methods
QPL
A one-page checklist of common questions and issues surrounding cancer care, quality of life, and end of life was adapted from two previous studies: a short form covering cancer treatment (without end-of-life issues)9 and a 20-page booklet of questions covering diverse topics in palliative care.10 Most questions on the QPL were drawn verbatim from these earlier instruments, with a few shortened or simplified to be more readily understandable; because of this, focus group evaluation or piloting of the QPL was not undertaken before this study. The QPL was created jointly through discussion among authors (J.C.Y., M.J.C., T.J.S.); it is shown in Table 1.
Table 1.
Question Prompt List for Patients
| Questions |
|---|
| People who see their doctor for the first time often have questions and concerns, but may feel nervous about bringing them up. We want you to feel comfortable talking to your doctor about whatever matters to you. The purpose of this form is to help you get information about your treatment and the quality of your life. Please take a few minutes to read this form. Indicate the questions you'd like to discuss and write down any other questions you have in the space provided. You can keep this sheet with you when you see the doctor. |
| Exactly what kind of illness do I have? |
| Will the illness get worse or spread? |
| What are the treatment options? Do they have side effects? |
| How long will it be before I know if the treatment is working? |
| What are the chances of completely curing my illness? |
| What will I be able to do on a daily basis? |
| What are the best and worst days going to be like? |
| Are there services to help me or my family cope with this illness? |
| The following questions may or may not be relevant to you, but we know that patients and their doctors often have a hard time discussing them. If you are concerned about any of these issues, we encourage you to please indicate them below: |
| How long am I likely to live? |
| Who can I talk to about the medical care that I want in the event that I am no longer able to speak for myself in the future? |
| How do I get my affairs in order and write a will? |
| Is it feasible for me to die at home and in comfort? |
NOTE. Data adapted.9
Study Population
A total of 30 patients scheduled for a new-patient consultation at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center were enrolled onto the study. All patients were diagnosed with advanced or metastatic head and neck cancer (stage III or IV) and were seen by a single medical oncologist. Potentially eligible patients were identified by the participating oncologists, and a research team member approached them during their clinic visit. Before their initial consultation at the clinic, participants received a copy of the QPL and were encouraged to use it however they wished. Physicians were not instructed to specifically endorse the QPL.
Assessment
Along with demographic information, the following outcomes were assessed with validated instruments that have been used in prior studies of communication aids in cancer care.9,10
Pre- and postvisit patient anxiety.
Anxiety was measured using the Spielberger State Anxiety Inventory, a widely used 20-item scale measuring situational anxiety. Scores range from 20 to 80, where higher scores indicate greater anxiety.11
Patient preferences for information.
Preferences for amount of detail and for good and bad news were assessed using items adapted from the Cassileth Information Styles Questionnaire. This scale has good internal reliability (Cronbach's α = 0.89).12
Decision-making preferences.
Preferences were assessed using the Control Preferences Scale,13 which has successfully been used to discern congruence between patients' ideal and actual decision-making experiences during cancer consultations.14 This 5-point scale anchors from 1 (“I prefer to make the final decision about my medical care”) to 5 (“I prefer to leave all decisions about my medical care to my doctor”).
Satisfaction with consultation.
Satisfaction was measured using the Patient Satisfaction With the Consultation Scale, a 25-item Likert scale adapted from Roter15 and Korsch et al.16 The internal reliability of this scale in a similar study was high (Cronbach's α = 0.91).9 Scores range from 25 to 125, where higher scores indicate greater satisfaction.
Feedback on QPL.
Feedback was provided through Likert-scale items, in which participants rated the QPL on its usefulness to themselves and their visit partners, relevance to their situation, and impact on anxiety and question asking.
The participant flow included the following steps: First, we reviewed the clinic list to identify eligible patients and then approached patients during their initial visit to explain the study. Second, the previsit surveys (demographics, Spielberger State Anxiety Scale, Cassileth Information Styles Questionaire, and Control Preferences Scale) took approximately 15 minutes. Third, patients reviewed the QPL, which took 5 to 10 minutes, in the waiting room before the encounter. Fourth, we asked the physician two questions: Did the QPL interfere with your workflow, and did the QPL make it easier for the patient or you to raise certain issues? We then asked the patients to complete the Patient Satisfaction With the Consultation Scale and the State Anxiety Scale and provide feedback on the QPL. This study was reviewed and approved by the Johns Hopkins Institutional Review Board.
Results
Baseline Characteristics
The baseline characteristics of the 30 participants are listed in Table 2. Mean age of participants was 57.2 years (range, 35 to 87 years; median, 56.5 years). Most participants were accompanied to their consultation by a visit partner (spouse, family member, or friend). Ten participants had metastatic disease.
Table 2.
Baseline Participant Demographic and Clinical Characteristics (N = 30)
| Characteristic | No. | % |
|---|---|---|
| Age, years | ||
| Mean | 57.2 | |
| SD | 13.5 | |
| Sex | ||
| Male | 20 | 67 |
| Female | 10 | 33 |
| Race/ethnicity | ||
| White, non-Hispanic | 24 | 80 |
| African American/black | 3 | 10 |
| Asian/Pacific Islander | 2 | 7 |
| Other | 1 | 3 |
| Education | ||
| Less than high school | 6 | 20 |
| High school/GED | 8 | 27 |
| 2-year college | 5 | 17 |
| Bachelor's degree | 4 | 13 |
| Master's degree | 2 | 7 |
| Professional/doctoral degree | 5 | 17 |
| Visit partner(s)* | ||
| None | 5 | 17 |
| Spouse or partner | 14 | 47 |
| Other family or friend | 14 | 47 |
| Tumor stage | ||
| III | 5 | 17 |
| IVa | 13 | 43 |
| IVb | 2 | 7 |
| IVc (metastatic) | 10 | 33 |
| Preference for information (amount of detail) | ||
| 1 (prefer as few details as possible) | 1 | 3 |
| 2 | 0 | 0 |
| 3 | 4 | 13 |
| 4 | 2 | 7 |
| 5 (prefer as many details as possible) | 23 | 77 |
| Preference for news about illness | ||
| Only as much information or news as necessary | 3 | 10 |
| Additional information only if it is good news | 2 | 7 |
| As much information as possible, both good and bad news | 25 | 83 |
| Preference for decision making† | ||
| Active (patient directed) | 17 | 57 |
| Shared | 13 | 43 |
| Passive (oncologist directed) | 0 | 0 |
| Previsit anxiety (STAI) score‡ | ||
| Mean | 46.0 | |
| SD | 11.8 | |
Abbreviations: GED, general educational development; SD, standard deviation; STAI, Spielberger State-Trait Anxiety Inventory.
More than one visit partner present during three consultations (10%).
Likert scale from 1 to 5, where 1 = “I prefer to make the final decision about my medical care” and 5 = “I prefer to leave all decisions about my medical care to my doctor.”
Patients' situational anxiety measured using STAI; scores range from 20 to 80, where higher scores reflect greater anxiety.
Information and Decision-Making Preferences
Consistent with findings from previous studies, most patients reported wanting as many details as possible (77%) and both good and bad news (83%) about their medical care. All patients desired an active (57%) or shared (43%) role in decision making with their oncologist.
Anxiety and Satisfaction
Mean anxiety scores (scale, 20 to 80) decreased from 46.0 to 39.6 (median decrease, 48.5 to 41.0) over the course of the visit (P < .005). Although the QPL addresses prognosis and end-of-life issues, most patients denied that some questions made them feel anxious (80%) or that the QPL felt overwhelming to read (70%). Satisfaction scores (scale, 25 to 125) were generally high (mean, 113.1; median, 111.5).
QPL Feedback
Twenty-eight patients fully read and understood the QPL; 27 patients used it as a personal checklist while meeting with their oncologist, but notably, no patients chose to directly share the QPL with their oncologist. As listed in Table 3, opinions regarding the QPL were positive; most patients found it easy to understand (97%), relevant (90%), and helpful to themselves (90%) and their visit partners (83%). A vast majority of participants recommended wider use of the QPL by patients and physicians (90%).
Table 3.
Patient Feedback on QPL (N = 30)
| Question | No. | % |
|---|---|---|
| Did you completely read and understand the question list (QPL)? | ||
| Yes | 28 | 93 |
| No, I didn't have enough time | 1 | 3 |
| No, I didn't understand some parts of it | 1 | 3 |
| How did you use the question list during the consultation? | ||
| Showed to the doctor | 0 | 0 |
| Used as a checklist during the conversation | 27 | 90 |
| Did not use during the consultation | 3 | 10 |
| Agreed or strongly agreed that: | ||
| The question list was helpful | 27 | 90 |
| My visit partner found the question list to be helpful | 25 | 83 |
| The question list was easy to understand | 29 | 97 |
| The questions were relevant and useful to me | 27 | 90 |
| The question list helped me put my questions or concerns into words | 27 | 90 |
| The question list helped me think of questions or concerns I hadn't thought about before | 24 | 80 |
| I would recommend that more doctors and patients use this sort of question list | 28 | 93 |
| Disagreed or strongly disagreed that: | ||
| There were questions that made me anxious | 24 | 80 |
| It felt overwhelming to read the question list | 21 | 70 |
| Postvisit anxiety (STAI) score* | ||
| Mean | 39.6 | |
| SD | 11.4 | |
| Satisfaction With Consultation Score† | ||
| Mean | 113.1 | |
| SD | 9.0 | |
Abbreviations: QPL, question prompt list; SD, standard deviation; STAI, Spielberger State Trait Anxiety Inventory.
Patients' situational anxiety measured using STAI; scores range from 20 to 80, where higher scores reflect greater anxiety.
Patient satisfaction measured using Satisfaction With Consultation Scale, 25-item Likert scale; scores range from 25 to 125, where higher scores reflect greater satisfaction.
Physician Experience
The medical oncologist (C.H.C.), from whose clinic patients were recruited, reported no appreciable negative impact of the QPL on workflow or on the consultations themselves. She also noted that none of the patients directly shared the QPL with her to guide questions.
Discussion
We developed a generalizable, easy-to-use QPL that includes common domains of concern for patients with cancer, including treatment options, adverse effects of treatment, and quality of life. Furthering the work of previous studies, our QPL also addresses treatment failure, advance-care planning, and concerns about end of life. To our knowledge, no single-page QPL targeted to new oncology patients has previously included these issues, and such a tool, to our knowledge, has not been investigated or implemented in any major US medical center. In this initial study, we found that the QPL was highly well received by patients, with a vast majority of participants recommending its wider use. The QPL also did not seem to increase patient anxiety, decrease patient satisfaction, or disrupt physician workflow, similar to other in-depth decision aids.4 Taken together, these results suggest that the QPL is a feasible communication aid for use in oncology consultations.
However, although the vast majority of patients found the QPL useful and recommended that more physicians and patients use it, no patients freely shared the QPL with their oncologist, despite being informed that they could do so. This paradoxic finding may indicate: one, patients did not find it necessary to directly discuss the QPL with their physician, or two, patients did not feel comfortable bringing a third-party communication aid into the conversation with their oncologist. The former reason is feasible, given that most patients were recruited from a few oncologists. The latter reason would also be consistent with the existing literature on patient perceptions of the oncology consultation,7 reinforcing the importance of physician initiative in improving communication. As previous research has shown, patients are essentially waiting for physicians to bring up difficult subjects, such as prognosis and treatment failure, but physicians most often do not.17 Even for a patient-centered communication tool, efficacy may ultimately hinge on physician endorsement of its adoption and use—a possibility that should be explored by future studies.
The findings from this pilot study parallel the results of previous randomized trials involving similar communication aids, but they should be interpreted within the context of several limitations. First, this was a single-arm study meant to assess the feasibility of a new QPL for oncology consultations. Thus, the effect of this QPL on patient anxiety and satisfaction and, more importantly, its impact on patients' understanding of their condition and medical care must still be evaluated against a comparison group. Follow-up studies should assess not only participants' subjective feedback on the QPL but also more objective measures of the impact of the QPL (ie, topics discussed during consultation, patient estimate of prognosis). Second, because participants were recruited from the clinic of one medical oncologist and one multidisciplinary team, at one tertiary-care medical institution, these findings should not be considered fully generalizable. Namely, the QPL may have a different role and impact when used by patients of other oncologists, with differing communication styles and potentially different health care settings. This will be an important consideration in designing future study and implementation of the QPL.
What is needed to make QPLs a new standard of care, given the evidence that they and other decision aids improve patient-provider interactions? In this study and others, patients used the QPL with high satisfaction and no increase in anxiety. Providers also found the QPL satisfactory, and it did not disrupt their workflow or significantly increase visit duration.10 However, QPLs remain rarely used in cancer care, despite a well-documented need for better patient understanding of prognosis and treatment goals—a need that will only grow as the health care paradigm shifts to emphasize shared decision making and patient-centered care. Further research will be necessary to clarify the role of this QPL and to more comprehensively evaluate its impact on oncology consultations. Nevertheless, the implementation of such a communication aid—along with the greater goal of improving patient-provider interactions in every facet of cancer care—is an important body of work that must be undertaken by health care providers on a wide scale.
In conclusion, a simple, one-page QPL addressing cancer treatment, prognosis, quality of life, and end-of-life issues was well received by new oncology patients and did not increase patient anxiety or affect physician workflow. Because 90% of participants recommended or strongly recommended wider use of this interactive, patient-provider tool, we will conduct a series of trials to determine whether use of the QPL indeed increases knowledge, facilitates informed decision making, and improves advance-care planning. Implementation of this simple tool may help patients address their most pressing concerns as we move toward a health care landscape that emphasizes involved patients making difficult, but informed, decisions.
Authors' Disclosures of Potential Conflicts of Interest
The authors indicated no potential conflicts of interest.
Author Contributions
Conception and design: All authors
Financial support: Thomas J. Smith
Administrative support: Jonathan C. Yeh, M. Jennifer Cheng, Thomas J. Smith
Collection and assembly of data: Jonathan C. Yeh, Christine H. Chung, Thomas J. Smith
Data analysis and interpretation: All authors
Manuscript writing: All authors
Final approval of manuscript: All authors
References
- 1.Matsuyama R, Reddy S, Smith TJ: Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer J Clin Oncol 24:3490–3496,2006 [DOI] [PubMed] [Google Scholar]
- 2.Harrington SE, Smith TJ: The role of chemotherapy at the end of life: “When is enough, enough?” JAMA 299:2667–2678,2008 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Mack JW Cronin A Taback N, etal: End-of-life care discussions among patients with advanced cancer: A cohort study Ann Intern Med 156:204–210,2002 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Smith TJ Dow LA Virago EA, etal: A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer J Support Oncol 9:79–86,2011 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Smith TJ, Longo DL: Talking with patients about dying N Engl J Med 367:1651–1652,2012 [DOI] [PubMed] [Google Scholar]
- 6.Weeks JC Catalano PJ Cronin A, etal: Patients' expectations about effects of chemotherapy for advanced cancer N Engl J Med 367:1616–25,2012 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Back AL Anderson WG Bunch L, etal: Communication about cancer at the end of life Cancer 113:1897–1910,2008suppl [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Corn BW: Ending end-of-life phobia: A prescription for enlightened health care reform N Engl J Med 361:e63,2009 [DOI] [PubMed] [Google Scholar]
- 9.Brown RF Butow PN Dunn SM, etal: Promoting patient participation and shortening cancer consultations: A randomized trial Br J Cancer 85:1273–1279,2001 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Clayton JM Butow PN Tattersall MH, etal: Randomized control trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care J Clin Oncol 25:715–723,2007 [DOI] [PubMed] [Google Scholar]
- 11.Spielberger CD: Manual for the State-Trait Anxiety Inventory (form Y) 1983Palo Alto, CA: Consulting Psychologist Press [Google Scholar]
- 12.Cassileth BR Zupkis RV Sutton-Smith K, etal: Information and participation preferences among cancer patients Ann Intern Med 92:832–836,1980 [DOI] [PubMed] [Google Scholar]
- 13.Degner LF, Sloan JA, Venkatesh P: The Control Preferences Scale Can J Nurs Res 29:21–43,1997 [PubMed] [Google Scholar]
- 14.Gattellari M, Butow PN, Tattersall MH: Sharing decisions in cancer care Soc Sci Med 52:1865–1878,2001 [DOI] [PubMed] [Google Scholar]
- 15.Roter DL: 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 [DOI] [PubMed] [Google Scholar]
- 16.Korsch BM, Gozzi EK, Francis V: Gaps in doctor-patient communication: 1. Doctor-patient interaction and patient satisfaction Pediatrics 42:855–871,1968 [PubMed] [Google Scholar]
- 17.Dow LA Matsuyama RK Ramakrishnan V, etal: Paradoxes in advance care planning: The complex relationship of oncology patients, their physicians, and advance medical directives J Clin Oncol 28:299–304,2010 [DOI] [PMC free article] [PubMed] [Google Scholar]