The Question‐prompt list (QPL): Why it is needed in the Indian oncology setting?

Abstract Background In India, caregivers are an integral part of the illness experience, especially in cancer, to the extent that they can become proxy decision‐makers for the patient. Further, owing to acute resource constraints in the Indian healthcare system, it may be difficult for oncologists to assess and elicit questions from each patient/caregiver. Consequently, there is a need to address these unique aspects of oncology care in India to improve patient outcomes and understanding of their illness and treatment. This can be achieved through a Question Prompt List (QPL), a checklist used by care recipients during medical consultations. Recent Findings This narrative review will first introduce research on the development and effectiveness of the QPL, and then it will highlight current gaps in oncology care in India and explore how the QPL may aid in closing these gaps. A literature search of the empirical research focused on the development, feasibility and acceptability of the QPL in oncology settings was conducted. The final review included 40 articles pertaining to QPL research. Additionally, psycho‐oncology research in India centered on information needs and experiences was reviewed. Current Indian psycho‐oncology research reports patients' want to be actively involved in their cancer care and a need for more illness information. However, a high demand on physicians' resources and the family caregivers' interference can be barriers to meeting patients' information/communication needs. International research demonstrates that a QPL helps structure and decrease consultation time, improves patient satisfaction with care, and improves the quality of communication during medical encounters. Conclusion QPLs for Indian patients and caregivers may focus on the scope of medical consultations to address patient needs while influencing the course and content of the patient‐caregiver‐physician interactions. Further, it can address the resource constraints in Indian oncology care settings, thus reducing the physician's burden.


| BACKGROUND
A fundamental way in which patients and family members can participate in medical consultations is by asking questions, enabling their information needs to be met. 1 Question-asking is associated with greater information delivery, fewer unmet needs for information, and better patient recall. 2,3 Although patients have a need to seek information regarding their illness, they encounter several barriers to finding and consuming this information. 4,5 For example, Datta et al 4 found patients indicated a need for information but were unable to convey it to the physician due to time constraints, fear of asking questions, family reluctance, and feelings of incompetence. To help patients overcome these barriers to question-asking during medical consultations, research has examined the efficacy of techniques such as tailored education coaching, 6 communication-centered interventions such as consultation planning, 7 and decision boards. 8 One such tool used for promoting question-asking is the Question Prompt List (QPL). 1 A QPL is a list of questions organized in categories patients may like to ask about their illness. Questions are derived from interviews with patients, family members/caregivers, and healthcare professionals. The QPL is provided to the patient before the consultation and patients encouraged to think about the most important questions they would like to ask during their upcoming consultation. The QPL can be used either as an individual intervention 9 or be paired with other interventions (eg, communication skills program). 10 Although QPLs have been mainly implemented with patients, 9,11,12 one study used a QPL with patients and caregivers. 3 In psycho-oncology research, QPLs have been used during various stages of the patient's illness and treatment including in first consultation, before surgery, when asked to participate in a clinical trial, and when cancer has advanced. 1,3,9,11,12 The QPL was observed to help in overcoming patients' inhibitions in asking questions, 2,3,13 provided structure to the medical consultation, 13 increased information given to patients, 2 and improved recall. 2,13 In India, there are vastly fewer physicians than patients (ratio 0.77:1000), 14 which places a huge demand on physicians' availability and time which, in turn, hinders patients' access to quality healthcare. 15 Given this, it may be effective to empower patients with the skills to structure communication to obtain the information and support most relevant to their situation. This review aims to (i) introduce empirical research pertaining to the development and effectiveness of the QPL and (ii) justify the use of the QPL in the contexts of Indian cancer care.

| Search strategy
A narrative literature review as recommended by Ferrari 16 and Green et al 17 was conducted to understand the development, feasibility, and effectiveness of the QPL. A database search was carried out in Web of Science, PubMed, and Google Scholar for articles published from 1994-2020. The following words/terms were used to perform this search: (i) question prompt list, (ii) question prompt sheet, (iii) prompt list, (iv) prompt sheet, (v) development, (vi) acceptability, (vii) feasibility, (viii) pilot, (ix) random controlled trial (x) RCT, (xi) oncology, and (xii) cancer, and Boolean operators of "and" and "or" were used to combine the above words/terms such as (i) and (v), (iii) and (ix), and (xi).

| Selection criteria
The selection criteria were original and empirical research which presented the development, acceptability, and/or effectiveness of the QPL in oncology settings. Exclusion criteria were articles which were: (i) implementing other interventions (eg, References 18,19)

| The Question Prompt List: an overview
The three stages of QPL research are represented in Figure 2, and a detailed description is provided below:

| Development of the QPL
The initial stage of developing a QPL includes conducting a qualitative study such as a focus group discussion (FGD) (eg, References 27,28), individual interviews (eg, References 29,30), expert panels (eg, References 31-33), or using a Delphi method (eg, References 34-36) to understand the specific questions that could usefully be asked by the target population regarding their illness and/or treatment. A few studies used previously published QPLs which were reviewed and modified by a panel (ie, patient, family caregivers, and healthcare professionals). 31,35,37 Through these qualitative methods and subsequent data analyses, a draft list of questions is generated for the patient/caregiver to use at the treatment consultation. The list can comprise questions and concerns the patient (i) would like to discuss with the healthcare professional (often physician) and (ii) that were not addressed in previous consultations. The list can be grouped into separate categories such as questions/concerns about the diagnosis, treatment, financial aspects, and timeline.
As questions patients may have can vary according to the type and stage of the illness and treatment, 1,3,9,11,12 QPLs have been developed for specific oncology-related illness and treatment contexts: type of cancer such as esophageal, 31 breast, 34 and brain, 37 ; for patients in a surgical setting or undergoing chemotherapy 38 ; patients being invited to participate in clinical trials 27 ; when receiving outpatient palliative care 35 ; and to facilitate end-of-life discussions and advance care planning among patients with an advanced cancer. 32 More recently, a QPL was developed for family members of paediatric palliative care patients. 36 Table 1 provides an overview of studies on the development of the QPL.

| Feasibility/acceptability of the QPL
Once the QPL is developed, its feasibility and acceptability are assessed. Data can be collected at three time points: (i) before the medical consultation (ie, responses of the patient/caregiver during the introduction of the QPL), (ii) during the medical consultation (ie, recording/observing the dynamic interaction with and feedback from the healthcare professional), and (iii) post consultation (ie, obtaining reflective feedback about the QPL from the patient/caregiver). Previous research collected some psychological data during these phases including patient satisfaction, levels of anxiety, and depression. 11,12,31,41 In most studies, patients reported the QPL to be useful, such that it could be beneficial for the caregivers to engage in question-asking, 31,32 it was a good communication tool which organized and prompted patients to ask questions during the consultation, 38,42 helped patients address critical questions related to end-of-life, and reduced the burden of comprehending excessive information. 32,43 Similarly, McLawhorn et al 44 reported that the use of QPL increased the number of do-not-resuscitate orders and hospice referrals. During the consultation, it was observed that patients using F I G U R E 1 Flowchart of the Literature selection process for the present article the QPL did ask more questions, 31 were able to address important concerns they had, 45 and engaged in a meaningful discussion with their physician, 27,29 and the time taken for the medical consultation was not impacted. 29,31 Interestingly, the QPL helped patients discuss delicate and difficult topics such as prognosis related questions. 29,31 On the other hand, it was noted that some topics were not addressed by patients during the consultation such as sexuality, body image, spirituality, and psychosocial support. 29,31 Yet, a recently implemented QPL reported to have increased overall treatment knowledge among the patient, 46 thus underscoring the role a QPL can play in knowledge acquisition, In the postconsultation feedback, patients reported reduced anxiety, 29,41 and that they did not find the QPL questions distressing, 39 while their levels of satisfaction with the consultation remained unchanged. 31 Likewise, during post consultation, clinicians reported the QPL was useful in addressing sensitive topics and reported need for such tool. 42,43 Table 2 provides an overview of studies understanding the feasibility of the QPL.

| Effectiveness of the QPL
Using randomized control trials, psycho-oncology research has tested the effectiveness of the QPL based on patients' self-reported outcomes at three different time points: (i) before the consultation; (ii) soon after the consultation; and (iii) on follow-up. The effectiveness of the QPL was measured using the following patient outcomes: (i) communication (ie, patients' question-asking, amount of information given, and length of the consultation); (ii) psychological (ie, levels of anxiety, depression, and patient satisfaction); and (iii) cognitive (ie, patients' recall of information exchanged during the consultation). 26 Table 3 provides a detailed description of intervention studies using the QPL.

Communication outcomes
Research using the QPL with cancer patients has indicated the number of questions asked during the medical consultation was higher in the intervention as compared to the control group. 3,9,33,48,49 Interestingly, patients using the QPL asked questions on specific topics such as diagnosis, prognosis, lifestyle changes, and quality of life In terms of the psychological outcomes of both depression and patient satisfaction, there were no differences between patients who used the QPL (ie, intervention) and those who did not (ie, control).
These findings remained unchanged during the postconsultation and opinions, attitudes) and behaviors will seek to restore consistency by reducing the importance of the discordant beliefs, adding more accordant beliefs which will outweigh the discordant beliefs, or changing discordant beliefs to avoid inconsistency. In this way, the authors posited patients may associate feelings of dissatisfaction with a lack of trust in the physician, which can be problematic dealing with a lifethreatening illness such as cancer. 33 Additionally, the authors argued patients with cancer relied on oncologists' knowledge and expertise far more than patients with less critical illnesses, making cancer patients more likely or inclined to overlook characteristics they considered unsatisfactory in their oncologists. 33 Interestingly, recent research exhibits contrasting findings to the above studies: Bouleuc et al 49

| The oncology care scenario in India
In India, 11 57 294 new cancer cases and 7 84 821 deaths due to cancer were reported for the year of 2018. 52 While the Government of India's efforts to increase cancer screening is reducing this mortality rate, it has led to increased incidence, further challenging the already insufficient healthcare resources in the nation. 53 A major resource deficit in India is the physician to patient ratio (0.77:1000) as compared to the World Health Organization recommendation of 1:1000. 14 This gap hinders access to quality healthcare in India, 15 resulting in decreased time with the physician during medical consultations (mean time: 1.5-2.3 minutes). 54 This scarcity of time has several consequences such as decreased patient understanding of their illness, 55 reduced satisfaction, 56 and a poor physician-patient relationship. 57 Interestingly, recent research in India shows physicians become dissatisfied when they are unable to provide their patients with adequate time and attention. 58

| Patients' unmet information needs in India
Recent trends in India highlighted that patients actively seek information and express the need to be involved in their medical decisionmaking. 4 Despite this desire for active participation, patients in India have consistently reported dissatisfaction especially with regard to the information provided to them. 4 The key explanations for patients' unmet information needs are family filtering "harmful" or demoralizing information, 63  and is typically focused on a specific aspect of the illness and treatment journey (eg, type of cancer, treatment, and palliative care). However, the current review did not consider this issue which can be of key importance in resource compromized settings as found in India.
QPL research in India should take into account this aspect and identify appropriate resources to fulfil these steps or examine methods to expedite the development of a QPL.

| CONCLUSION
Research in India indicates changing trends in patient-physician communication with patients expressing a need to be actively involved in their treatment and medical decisions. A key method to engage in one's illness decisions is to become acquainted with relevant medical information. However, a poor physician-patient ratio and family involvement throughout the medical care trajectory are primary contributors to Indian patients' unmet information needs. A QPL can help address these issues by providing both patients and their care- givers an opportunity to ask questions about the illness and its treatment and assisting patients' active involvement. Additionally, the QPL helps patients to be systematic in seeking difficult information, thus addressing issues centered on the strained medical resources in India. Therefore, a QPL may be an appropriate tool for facilitating communication between the oncologist, patient, and family caregiver in India.

ETHICAL STATEMENT
Not applicable.

ACKNOWLEDGMENT
The first author was supported by the Ministry of Human Resources and Development (PhD fellowship).

CONFLICT OF INTEREST
There is no conflict of interest.

AUTHOR CONTRIBUTIONS
All authors had full access to the data and take responsibilities and the accuracy of data analysis.

DATA AVAILABILITY STATEMENT
Data sharing not applicable to this article as no datasets were generated or analyzed during the current study.
ORCID Shweta Chawak https://orcid.org/0000-0001-8732-1357 ENDNOTES * Collusion refers to a secret agreement between the medical staff and the caregivers to withheld or not share information (diagnosis, prognosis or patients medical details) among the patients. The medical information maybe selectively or completely not disclosed to the patient or their relatives. 67