Development of a Patient Question Prompt List for Older Adults with Early-Stage Hormone Receptor-Positive Breast Cancer

Abstract

PURPOSE

Older women with early-stage hormone receptor-positive (HR+)/human epidermal growth factor receptor-2-positive (HER2-) breast cancer face many preference-based decisions regarding the treatment they receive, as some therapies can be safely omitted. Our objective was to develop a question-prompt list for patients ≥70 with early-stage HR+/HER2− breast cancer for use at their initial surgical consultation.

METHODS

We recruited women diagnosed at age ≥ 70 with cT1-2N0 HR+/HER2− breast cancer in the past year to participate in virtual focus group about their experience gathering information about their diagnosis and treatment, and to gather feedback on a question-prompt list. Baseline questionnaires were gathered and focus groups were then recorded and transcribed. A codebook was developed based on a combination of deductive and inductive codes. The research team conducted a thematic analysis and made iterative revisions to the list.

RESULTS

Four focus groups were conducted with 4-5 participants in each (n=19 participants). The average age of participants was 74.1 (SD 3.2); 18 were non-Hispanic White. Major themes included: 1) patients and physicians share responsibility for meeting patients’ informational needs, 2) a question-prompt list is one of many helpful strategies for cancer information gathering, and 3) question-prompt lists must account for different needs by phase in the cancer journey.

CONCLUSION

We developed a question-prompt list that was found useful to women ≥70 with HR+/HER-2− early-stage breast cancer. Next, we will test the effects of this list on patient-engagement and the quality of patient-physician conversations at initial breast surgical oncology consultations in a pilot trial.

INTRODUCTION

Over 83,000 women ≥70 years old are diagnosed with breast cancer annually in the U.S.,[1] and >80% of these women have hormone receptor-positive (HR+) disease.[2] Standard locoregional therapy for early stage breast cancer includes 1) surgical removal of the tumor, either by mastectomy or lumpectomy 2) axillary surgery, which can refer to either axillary lymph node dissection or sentinel lymph node biopsy (SLNB), the latter of which is considered the current standard of care for axillary evaluation in clinically node-negative patients, and 3) radiation therapy (RT) if lumpectomy is pursued. However, in this particular patient population, randomized controlled trial data have shown the equivalency in survival between lumpectomy and RT vs mastectomy[3]. In addition, axillary surgery[4, 5], and RT[4, 6] can be omitted without compromising survival outcomes.

Women ≥70 years of age with early-stage, HR+ breast cancer thus face numerous preference-sensitive treatment decisions, making them a population in need of high-quality shared decision making. Surgeons, in particular, need to address these decisions in their initial treatment consultations, as they are usually the first oncologic specialists to discuss treatment options with newly diagnosed breast cancer patients. Although patient engagement is paramount to effective conversations, many patients do not participate as much as they would like during their oncology consults[7, 8] and informational needs can often go unmet. [9] Although patient question-prompt lists have been shown to be an effective way to increase patient engagement and improve consult communication,[10] currently no rigorously tested question-prompt lists specific to our patient population exist. Our objective was to develop a question-prompt list for patients ≥70 with early-stage HR+/HER2− breast cancer for use at their initial surgical consultation.

MATERIALS/METHODS

Sample

Female breast cancer survivors, diagnosed at the age of ≥70 or older with clinical T1-2 (tumor ≤3cm), node-negative, HR+/HER-2− disease within the past 12 months, were approached at their post-operative or surveillance follow-up appointments at the two main clinic sites of a large academic cancer center. Men, women with non-ductal or lobular histologies, who were non-English speaking, and a score of >9 on the Orientation-Memory Concentration Test (a score indicative of dementia)[11] were excluded. Participant flow is summarized in Supplemental Figure 1.

Study Procedures

Patient records were screened by a trained research assistant (MH), then approached in clinic and written consent was obtained prior to their appointment. Baseline questionnaires were obtained by the research assistant within one week of consent. Prior to the focus groups, participants were e-mailed a draft of a question-prompt list developed by CM, a practicing breast surgical oncologist, and asked to review this prior to the focus group. Virtual focus groups were conducted over Zoom, facilitated by a trained qualitative researcher (AR). Patients were asked about their perspectives on their role in information gathering, and on any potential deficits they could remember about the information gathered from their initial treatment consultations. Feedback on the QPL draft was also elicited. The preliminary list presented to the first two groups incorporated questions from existing surgical[12] and oncology question-prompt lists[13], tailored to the specific patient population in question (Supplemental Material). After the second focus group, the question-prompt list was revised based on data from the first two groups; the revised version was then used in the third and fourth focus groups. The focus group was audio-recorded and transcribed and field notes were taken by two secondary research team members (CM and MH).

Study Measures

The baseline questionnaires were used to assess demographics, frailty (FRAIL scale)[14], decision-making preferences (Control Preferences Scale (CPS), a 5-item scale that allows respondents to denote their preferences with regards to healthcare decision participation)[15], and preferences regarding health care use (Medical Maximizer-Minimizer Scale, a 10-item scale with items scored on a 1-7 Likert scale; scores ≤4 indicate medical minimizing and scores >4 indicate medical maximizing[16]).

Data Analysis

The audio-recorded conversations were anonymized and transcribed. Transcripts were not provided back to the study participants. Data collection and analysis were performed concurrently to determine when thematic saturation had been reached[17].

The initial codebook was created by all three team members (Supplementary Material) and included both deductive codes chosen a priori and inductive codes identified during transcript review. Initial independent review of the first two transcripts by the entire study team allowed for exploration and interrogation of the draft codebook to identify any differences in interpretation of or application of codes.[16, 18] In addition, this review was used to revise the initial question-prompt list. The codebook was iteratively revised four times and the final codebook was applied to all transcripts. All four transcripts were coded by both CM and MH with regular team meetings to ensure coding consensus and to resolve any areas of uncertainty or disagreement. The research team met to iteratively discuss the salient themes and to determine when saturation had been reached. Coding was performed using Atlas.ti software, version 12.5.0 (QSR International). The study was guided by the Consolidated Criteria for Reporting Qualitative Research Checklist.[19] Institutional review board approval for the study was obtained from the Dana Farber/Harvard Cancer Center Institutional Review (IRB#: 20-610).

RESULTS

Out of an initial 57 patients who were eligible, 24 refused participation, citing lack of interest, feeling overwhelmed, or concerns about protected health information; 33 were then consented, but seven had scheduling conflicts with focus group times, six withdrew, and one participant did not show up for the focus group. Four focus groups were thus conducted with 19 participants (range 4-5 per group) from December 2024 to May 2025. Focus groups lasted an average of 42.2 min (SD 2.4 min). Participants on average were aged 74.1 years (SD 3.2 years), and were on average 6.7 months from diagnosis. Nine (56%) were robust, while six (38%) were pre-frail (Table 1). None were frail. The majority were white (n =18, 95%), had completed a college degree or higher (n=9, 56%), had an income of $80,000 or above(n=9, 56%), and were retired (n=14, 88%). All participants either preferred to make decisions with their doctor or to make treatment decisions after considering their doctor’s opinions, and 81% (n=13) were medical maximizers.

Table 1.

Patient Demographics

Characteristics (n=16)
Mean age, years (SD) (age range 70-80)	74.1 (+/− 3.2)
Age: N (%)a
70-74	12 (63)
75-79	4 (21)
80-84	3 (16)
>85	0 (0)
Race: n (%)a
Black or African American	1 (5)
Non-Hispanic White	18 (95)
Education: n (%)
High school graduate or GED	0 (0)
Some college or technical degree	6 (38)
Completed college	4 (25)
Graduate degree	4 (25)
Post-graduate degree	1 (6)
Not answered	1 (6)
Income: n (%)
< $20,000	0 (0)
$20,001 – 40,000	1 (6)
$40,001 – 60,000	3 (19)
$60,001 – 80,000	1 (6)
$80,001 – 100,000	2 (13)
> $100,000	7 (44)
Prefer not to say	2 (13)
Employment: n (%)
Retired	14 (88)
Employed < 32 hrs/week	0 (0)
Employed ≥ 32 hrs/week	1 (6)
Not answered	1 (6)
Marital Status: n (%)
Currently married	8 (50)
Widowed/Divorced	6 (38)
Never Married	2 (13)
Not answered	1 (6)
Living Situation: n (%)
Alone	5 (31)
With spouse/partner	9 (56)
With children over 18	1 (6)
Not answered	1 (6)
Living Location: n (%)
Urban	4 (25)
Suburban	8 (50)
Rural	4 (25)
Control Preferences Scale: n (%)
“You prefer that your doctors make the decisions with little or no input from you”	0 (0)
“You prefer that your doctors make the decisions after considering your opinion”	0 (0)
“You prefer that you and your doctor make decision together”	10 (63)
“You prefer to make the final treatment decision after considering your doctor’s opinion”	6 (38)
“You prefer that you make the decisions with little or no input from your doctors”	0 (0)
Did not answer	0 (0)
Medical Maximizer-Minimizer Scale: n (%)b
Maximizer	13 (81)
Minimizer	3 (19)
Unknown	0 (0)
Frailty Status: n (%)c
Robust	9 (0)
Pre-Frail	6 (0)
Not answered	1 (6)
Blessed Orientation Memory Concentration scores: n(%)d
4-6	6 (38)
≤3	10 (63)

^adata abstracted from charts (n=19); below data from completed baseline questionnaires (n=16)

^bTen-item scale; items scored on a 1-7 Likert scale with scores below 4 indicating medical minimizing and scores above 4 indicating more medical maximizing[16]

^cFRAIL scale: 5-item scale with score=0-1 indicative of being robust, 2 indicative of being pre-frail; 3 indicative of being frail

^d6-item scale, total score out of 28, score >10 considered abnormal

Abbreviations: SD: standard deviation, GED = general educational development

We identified four themes from the data regarding patient question-prompt lists at initial treatment consultations for breast cancer: 1) Patients perceive that meeting informational needs is a shared responsibility with physicians, 2) A question-prompt list is one of many helpful strategies for cancer information gathering, and 3), Implementation must account for different needs by phase in the cancer journey.

Patients perceive that meeting informational needs is a shared responsibility with physicians

Patients and physicians share responsibility for meeting patients’ informational needs

Participants perceived that both they and their physicians bore responsibility, although individuals expressed the difference in the dynamic between the two. While one participant stated, “I think that my role is the most important role,” (Focus Group 3) (Table 2), and another emphasized the importance of medical providers to adjust treatment conversations to the “level of knowledge and emotional state and ability to take in information,” many expressed the need for a truly shared experience. As one participant put it: “I believe very strongly that I want to be an advocate for myself. However, I do also feel like I need guidance because I don't know everything” (Focus Group 3). There were no participants who expressed that meeting informational needs was the exclusive responsibility of the patient or physician alone.

Table 2.

Representative Quotes by Theme

Theme	Subtheme	Representative Quotes
Patients and physicians share responsibility for meeting patients’ informational needs		“I believe very strongly that that I want to be an advocate for myself. However, I do also feel like I need guidance because I don't know everything. And other people have different experiences, and I felt like I really wanted to be part of a team.” (Focus Group 3)
A question-prompt list is one of many helpful strategies for cancer information gathering		“I have to agree that having these questions ahead of time would have been very helpful…Because these are things that are just swimming around in your head… you just don't remember them all.” (Focus Group 4)
	Our question-prompt list was endorsed by survivors, with suggestions for revisions	“’How treatable is it?’…That question isn't really on here. The second one it's ‘my treatment options.’ It's a little premature for that because I think, maybe switch it to “what are the recommended treatment?” (Focus Group 1) “If you were going to develop those lists of questions, my thought would be is to have them treatment specific.” (Focus Group 2)
	Technology can facilitate information gathering and communication with treatment team	“I basically just went out there and did [an internet] search on questions to ask regarding breast cancer diagnosis, and just read up on the various sites that came up.” (Focus Group 1) us Group 4) “I find that the [patient portal] is very helpful, not only seeing test results, but if I do have questions, you can always write a question to the particular Doctor…” (Focus Group 2)
	Friends/family provide social support as well as aid in information digestion	“It was good to have- being able to have someone there that they would let me go through all of this and listen with you and then we could sit back and kind of chew on it together afterward.” (Focus Group 3) “I had my husband too, and he knows so much more than I do about medical things, so he was great, and he also has a better memory than I at this stage, and so he would remember things I didn't remember” (Focus Group 3)
Implementation must account for different needs by individual and by stage in the cancer journey		“There are stages. The first time you go in you’re barraged with information, and you're not really thinking past surgery.” (Focus Group 2)
	Initial cancer diagnoses can spur specific questions and elicit strong emotional reactions	“…it's hard to imagine, I guess, how overwhelming it feels to have this diagnosis. How terrifying, overwhelming, and disorienting.” (Focus Group 1) “It seems like most of us when we first start this journey, we really don't have any idea where to start. But then as we talk to people and you know, it prompts a feeling or a thought or something we didn't know, or something was learned. [This question list is] a really good foundation for that. (Focus Group 3)
	Residual informational needs continue into survivorship	“I also think it would be helpful to have some sort of a prognosis as to the kind of cancer that you have and how other people have gotten along with the medication…those are the questions that come later, you know? It's like when you're going through it, you just don't think that far ahead.” (Focus Group 2)

A question-prompt list is one of many helpful strategies for cancer information gathering

Participants also reaffirmed that a question-prompt list would have been helpful at the time of their initial consultation: “…I totally agree that it's good to have the questions ahead of time and [having] the opportunity to decide which questions you want to ask might be really useful…” (Focus Group 3). However, participants described it as an adjunct to other important resources for information gathering and information processing. For instance, utilization of online informational resources, for initial informational gathering directly following diagnosis, and the electronic medical record portal, for longitudinal information-gathering from their providers, was often cited. In addition, while family and friends present at the time of the initial surgical consult represented social support, they were also cited as being important factors in information digestion, facilitating informational processing after the consultation had ended. The specific questions that participants identified as having been relevant to their informational journey were added to the QPL (e.g. questions regarding how treatable was the cancer and the potential effects of anesthesia).

Implementation must account for different needs by phase in the cancer journey

Strong emotional reactions to the initial cancer diagnosis were often mentioned, coupled with the idea that a question-prompt list could be helpful at this particular juncture. As one participant put it, “It’s hard to imagine, I guess, how overwhelming it feels to have this diagnosis. How terrifying, overwhelming, and disorienting. So if the hospital had said ‘bring your questions and here's some examples’, that would have been really helpful” (Focus Group 1). To address this strong initial emotional reaction, participants suggested that the first question on the list should be, “How treatable is this cancer?” However, there was also stress placed on the fact that informational needs continue through the journey into survivorship, and thus information, like that related to prognosis or recurrence risk, may need to be discussed, even if it had been mentioned at the time of the initial consult. The repeated mention of the phases of the cancer journey prompted revision of the initial question-prompt list to be divided into different sections: overarching questions, questions about surgical options, risks, and benefits, questions about the post-operative period, questions about long-term outcomes and survivorship. In addition, participants felt that in their age group, concerns regarding anesthesia effects, and treatment effects on their comorbidities, were especially important to address. A direct question regarding physician treatment recommendation was also added, at the request of participants. The final version of the question-prompt list included 20 questions and was written at a Flesch-Kincaid 6^th grade reading level (Figure 1, Supplemental Material).

Figure 1).

Final Patient Question Prompt List

DISCUSSION

This qualitative study found that breast cancer survivors with early-stage HR+/HER2− disease felt as if informational needs were shared by patients and physicians alike, that they viewed question-prompt lists as a potentially helpful tool in information gathering, and that the implementation of a question-prompt list for this particular population has to reflect an awareness of changing needs by phase in the cancer journey.

Question-prompt lists used in oncology settings have been shown to increase patient questions,[20] treatment-related knowledge and reduce patient’s decision conflict[21], and to decrease the length of consultation[7] in certain studies. However, a recent randomized controlled trial in patients contemplating major surgery failed to demonstrate a difference in engagement and wellbeing between patients given a question-prompt list and those who were not [22]. While our participants endorsed the potential utility of a question-prompt list, he mixed landscape of the literature underscores the fact that the effectiveness of such a tool not only relies on the tool itself, but on its implementation into clinical practice. Participants in this analysis consistently described a longitudinal evolution of information needs across their cancer journey, and thus timing of introduction of this question-prompt list should be thoughtful. Some participants felt that having this question-prompt list at the time of diagnosis would be helpful in organizing some their initial thoughts, and thus potential distribution by breast radiologists or primary care providers, who are actually relaying cancer diagnoses to patients may be helpful. This may help to supplement some of the ongoing information gathering strategies that participants endorsed, such as online research, continued electronic medical record portal communication with their providers, and conversations with family and friends. As literature would suggest that the majority of cancer patients look to informational sources other than their physicians[23], using on average five different information sources [24] there is the suggestion of needs unmet by clinician consultations. Interventions designed to both optimize clinician-patient communication and interactions, along with those leveraging outside patient-facing data sources, in the service of enhancing patient education are needed. Question prompt-lists are a low-cost intervention that could have a great deal of benefit. Similar to our findings, past studies have found that patient desire sufficient time to review question-prompt lists in advance of a physician consultation, and sending the lists through patient portals, or via text or mail, have been found to facilitate their use.[25]

In addition, while it would appear that question-prompt listss are a worthwhile intervention, there may be an underlying assumption that providers know how to answer the questions put forth in the list. This may not necessarily be true, and thus pairing the question-prompt list with a provider-focused intervention with emphases on content and communication expertise, has been called for in past studies[25], and is likely necessary to see measurable effectiveness of a question-prompt list.[22] Future work must focus on developing these types of multi-level interventions to improve patient-provider communication over the whole of an individual’s cancer journey.

Limitations

Our findings may not be generalizable to a broader population as recruitment was drawn from a single large academic cancer center, and despite efforts to approach a diverse patient population, there was limited participation from racial and ethnic minorities, as well as older adults with low income and education levels. Respondent bias may also be inherent as women less likely to participate in research studies may not have the same perspective on question-prompt lists. In addition, as with all qualitative research, the findings are based on the lens of the research team, although measures to ensure rigor included regular meetings to discuss our interpretations, and including team members with differing perspectives. In addition, although multiple attempts were made to obtain baseline questionnaires from all participants, three did not complete these.

CONCLUSION

A patient question-prompt list was endorsed as a useful strategy in patient information gathering and this question prompt-list developed by our study team is a tool that may facilitate patient-physician conversations at initial breast surgical oncology consultations for older adults with early-stage breast cancer.

Supplementary Material

1. Study Flow Diagram

2. Focus Group Interview Guide

3. Initial Patient Question Prompt List

4. Finalized Patient Question Prompt List—printable version

Data Availability Statement:

Data cannot be shared for ethical/privacy reasons: The data underlying this article cannot be shared publicly due to their sensitive nature and to protect the privacy of individuals that participated in this study.