Randomized trial of a question prompt list to increase patient active participation during interactions with black patients and their oncologists

ObjectiveCommunication during racially-discordant interactions is often of poor quality and may contribute to racial treatment disparities. We evaluated an intervention designed to increase patient active participation and other communication-related outcomes during interactions between Black patients and non-Black oncologists.MethodsParticipants were 18 non-Black medical oncologists and 114 Black patients at two cancer hospitals in Detroit, Michigan, USA. Before a clinic visit to discuss treatment, patients were randomly assigned to usual care or to one of two question prompt list (QPL) formats: booklet (QPL-Only), or booklet and communication coach (QPL-plus-Coach). Patient-oncologist interactions were video recorded. Patients reported perceptions of the intervention, oncologist communication, role in treatment decisions, and trust in the oncologist. Observers assessed interaction length, patient active participation, and oncologist communication.ResultsThe intervention was viewed positively and did not increase interaction length. The QPL-only format increased patient active participation; the QPL-plus-Coach format decreased patient perceptions of oncologist communication. No other significant effects were found.ConclusionThis QPL booklet is acceptable and increases patient active participation in racially-discordant oncology interactions. Future research should investigate whether adding physician-focused interventions might improve other outcomes.Practice implicationsThis QPL booklet is acceptable and can improve patient active participation in racially-discordant oncology interactions.     

Questions and emotional expressions from patients and companions while participating in multidisciplinary tumor conferences in breast and gynecological cancer centers

ObjectiveTo investigate (a) how many questions and negative emotions (cues/concerns) breast and/or gynecologic cancer patients and companions express during their case discussion in multidisciplinary tumor conferences (MTCs), (b) with which topics the emotions are linked, and (c) which patient- and context-related characteristics determine patients’ communicative behavior.MethodsThis observational study included audio/video recordings of MTCs with patient participation in three breast and gynecological cancer centers. Using the Verona Coding Definitions of Emotional Sequences, patients’ and companions’ questions and negative emotions expressed were analyzed. Multiple regression analyses were used to determine associations between communicative behavior and patient- and context-related characteristics.ResultsWe identified 607 questions and 230 cues/concerns expressed by patients/companions in 82 case discussions in MTCs. The number of questions was significantly associated with the hospital. In case discussions with patients who had need for psychological support and who were accompanied, more questions were asked by patients/companions.ConclusionThe results show that active patient participation does not depend only on patient characteristics, but also on the hospital setting.Practice implicationsIf cancer centers want to enable patient participation in MTCs, they must define the role of the patient before. Subsequently, conditions must be created to enable this role expectation.     

Examining the context and helpfulness of family companion contributions to older adults’ primary care visits

ObjectiveOlder adults commonly involve family (broadly defined) in their care. We examined communication behaviors of family companions during older adults’ primary care visits, including whether these behaviors vary with respect to how older adults manage their health, preferences for involving family in medical decision-making, and ratings of companion helpfulness.MethodsAnalysis of audio-taped primary care visits of older patients who were accompanied by a family companion (n = 30 dyads) and linked patient surveys.ResultsFamily companions predominantly facilitated doctor and patient information exchange. More than half of companion communication behaviors were directed at improving doctor understanding of the patient. Companions were more verbally active during visits of patients who delegated the management of their health to others than visits of patients who co-managed or self-managed their health. Companions were rated as more helpful by patients who preferred active involvement of family in medical decision-making.ConclusionFamily companion participation and helpfulness in primary care communication varies by patients’ preferences for involving family in medical decision-making and approach to manage their health.Practice implicationsResearch to examine the effects of clarifying patient and family companion expectations for primary care visits could inform strategies to improve the patient-centeredness of medical communication.     

What patients want to ask their doctors: Data analysis from Question Builder,an online question prompt list tool

ObjectivesQuestion prompt lists (QPLs) are one strategy to increase patient participation in healthcare decisions but the extent to which consumers might access them in the ‘real world’ is largely unknown. This study measured usage of a passively-promoted, government-funded web-based patient-generated QPL tool, called Question Builder (Australia) (QB) hosted on healthdirect.gov.au, a consumer health information website.Methods12.5months of post-launch Google Analytics data from QB were analysed. Two existing coding frameworks (RIAS and ACEPP) were used to code QB questions thematically and 107 user-generated lists were analysed further to determine the questions chosen and prioritised.ResultsQB was accessed 8915 times, 4000 question lists were commenced and 1271 lists completed. Most lists were for general practice (GP) consultations (2444) rather than specialist consultations (1556). The most frequently chosen question was “Do I need any tests?”. Shared decision-making questions (SDM) made up 40% of questions prioritised e.g. “Do I need any treatment and what are my treatment options?”ConclusionsThere is active use of this online QPL, with strong interest in creating lists for GP consultations. Question Builder users prioritised questions which facilitate SDM.Practice ImplicationsMore research is required to assess the utilisation of QB in practice and health professionals’ views of QB.     

Testing the utility of a cancer clinical trial specific Question Prompt List (QPL-CT) during oncology consultations

Objective

A Question Prompt List (QPL) is a proven, simple intervention to aid patients to be active participants in consultations with their physicians by asking questions. We aimed to further develop and test the efficacy of a targeted QPL for clinical trials (QPL-CT).

Methods

Breast, Lung and Genitourinary cancer patients who were facing a discussion about a therapeutic clinical trial completed short pre- and post-consultation questionnaires and used the QPL-CT in their discussions with their oncologists.

Results

30 participants were recruited from 6 oncologists. All QPL-CT questions were selected by at least one-third of participants. Participants mostly wanted and asked questions about personal trial benefit. Oncologists provided information about personal benefit to varying degrees, thus patients did not ask some questions. Patients were still left with some unasked and unanswered questions.

Conclusion

The QPL-CT has potential as a simple, inexpensive intervention to aid such communication. Further investigation is needed to demonstrate the efficacy of the QPL-CT in improving cancer patient outcomes.

Practice implications

These preliminary finding suggest that important areas of clinical trials are overlooked in clinical consultations. The QPL-CT may be an effective method to encourage oncologists to endorse patient question asking about clinical trials and prompt patient questions.     

Patient-provider communication during second opinion consultations in oncology

ObjectiveProviding a second opinion (SO) in oncology is complex, and communication during SOs remains poorly understood. This study aimed to systematically observe how patients and oncologists communicate about SO-specific topics (i.e., patient motivation, the referring oncologist, treatment transfer/back-referral), and how such communication affects patient satisfaction.MethodsA prospective mixed-methods study of cancer patients seeking a SO (N = 69) and consulting oncologists was conducted. Before the SO, patients reported their expected place of future treatment. Following the SO, patients’ and oncologists’ satisfaction was assessed. All SOs were audio-recorded. Absolute and relative duration of SO-specific talk were calculated and specific events (e.g., questions/utterances) were coded (incl. valence, explicitness).ResultsSOs lasted 19–73 min, of which 3.7% was spent discussing motivations. Oncologists rarely explored patients’ motivations. Talk about referring oncologists (12.5% of consultation) was mostly critical by patients (M = 43.0%), but positive/confirming by consulting oncologists (M = 73.5%). Although 22.2% of patients expected a treatment transfer, this topic (3.3% of consultation time) was rarely explicitly discussed. Patients who were referred back were significantly less satisfied (d = 0.85).ConclusionPatient-provider communication in oncological SOs appears insufficiently aligned.Practice ImplicationsPatients and oncologists need support to explicitly and productively communicate about SO-specific topics and to better manage expectations. Recommendations are provided.     

Variation in question asking during cancer clinical interactions: A potential source of disparities in access to information

Objective

To investigate whether patient demographic characteristics and patients’ companions influence variation in patient question asking during cancer clinical interactions, thus representing a potential disparity in access to information.

Methods

Data included 109 oncologist-patient-companion interactions video recorded at a comprehensive cancer center. Interactions were observed and analyzed using the Karmanos Information Seeking Analysis System (K-ISAS).

Results

Significant relationships were found between patient race/ethnicity and question asking. Black patients asked fewer questions and a smaller proportion of direct questions (relative to the total frequency of questions) than White patients. Black patients were also less likely to have companions present during the interaction, which resulted in fewer questions asked on Black patients’ behalf.

Conclusion

Differences in question asking by Black and White patients suggest that Black patients may receive less information from their oncologists than White patients.

Practice/research implications

Patients should be encouraged to ask more questions and more direct questions and to bring a companion to the interaction to assist them in gaining information from their physician. Future research is needed to investigate ways to eliminate this potential source of disparities in access to information.     

Oncologists’ perceived confidence and attitudes toward managing pre-existing chronic comorbidities during patients’ active cancer treatment

PurposeTo examine practicing oncologists’ perceived confidence and attitudes toward management of pre-existing chronic conditions(PECC) during active cancer treatment(ACT).MethodsIn December 2018, oncologists in the National Cancer Institute's Community Oncology Research Program (NCORP) were invited to complete a was pilot-tested, IRB-approved online survey about their perceived confidence in managing PECC. Pearson chi-square test was used to identify oncologists’ differences in perceived confidence to manage PECC and attitudes toward co-management of patients’ PECC with non-oncologic care providers. Perceived confidence and attitudes were analyzed as a function of medical specialty while controlling demographic and medical practice variables.ResultsA total of 391 oncologists responded to the survey, 45.8% stated medical oncology as their primary specialty, 15.1% hematology oncology, 15.1% radiation oncology, 6.9% surgical oncology, and 17.1% other specialties such as gynecology oncology. Overall, 68.3% agreed (agree/strongly agree) that they were confident to manage PECC in the context of standard of care. However, only 46.6% and 19.7% remained confident when managing PECC previously managed by a primary care physician (PCP) and by a non-oncology subspecialist, respectively. Most oncologists (58.3%) agreed that patients’ overall care was well coordinated, and 63.7% agreed that patients had optimal cancer and non-cancer care when PECC was co-managed with a non-oncology care provider.ConclusionMost oncologists felt confident to manage all PECC during patients’ ACT, but their perceived confidence decreased for PECC previously managed by PCPs or by non-oncology subspecialists. Additionally, they had positive attitudes toward co-management of PECC with non-oncologic care providers. These results indicate opportunities for greater collaboration between oncologists and non-oncology care providers to ensure comprehensive and coordinated care for cancer patients with PECC.     

Effectiveness of question prompt lists in patients with breast cancer: A randomized controlled trial

ObjectivesTo evaluate the effectiveness of a question prompt list (QPL) in decision self-efficacy, decision-making participation, patient–physician communication, decisional conflict or regret, and health status in patients with breast cancer.MethodsA total of 240 patients with breast cancer were randomly assigned to a QPL group or control group (n = 120 each). The intervention and control groups received an additional educational QPL booklet and routine care, respectively.ResultsThe intervention group exhibited significant improvements in decision self-efficacy, perceived patient–physician interactions, and patient–physician communication compared with the control group. Multilevel modeling analyses revealed significant group–time interaction effects on decision self-efficacy (β = 9.99, P < 0.01), perceived patient–physician interactions (β = 8.10, P < 0.01), patient–physician communication (β = 5.02, P < 0.01), and anxiety status (β = ?3.78, P < 0.05). The QPL intervention exerted more favorable effects than routine care, with repeated measurements of the same patients and the data of patients under the care of the same surgeons accounted for.ConclusionsThe QPL intervention exerted multidimensional effects on decision-making outcomes among patients with breast cancer.Practical implicationsClinicians can integrate a QPL into routine care for patients with breast cancer.     

Digital audio recordings improve the outcomes of patient consultations: A randomised cluster trial

ObjectivesTo investigate the effects on patients’ outcome of the consultations when provided with: a Digital Audio Recording (DAR) of the consultation and a Question Prompt List (QPL).MethodsThis is a three-armed randomised controlled cluster trial. One group of patients received standard care, while the other two groups received either the QPL in combination with a recording of their consultation or only the recording. Patients from four outpatient clinics participated: Paediatric, Orthopaedic, Internal Medicine, and Urology. The effects were evaluated by patient-administered questionnaires.ResultsA total of 4349 patients participated in the study. DAR significantly increased the probability of fulfilling the participants’ self-perceived information needs by 4.1% to 6.3%, particularly with regard to test results (OR = 1.41, 95%CI: 1.14-1.74, p = 0.001) and treatment options (OR = 1.39, 95%CI: 1.13-1.71, p = 0.002). Additionally, the interventions positively influenced the participants’ satisfaction with the treatment, their relationship with the health professional, and their experience of being involved in the decision-making.ConclusionProviding outpatients with a QPL and DAR of their consultation positively influences the patients’ perception of having adequate information after the consultation.Practice implicationsThe implementation of a QPL and audio recording of consultations should be considered in routine practice.     

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency

ObjectiveResearch shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL.MethodsFocus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability.ResultsProvider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families.ConclusionOur QPL may address challenges faced by Latino parents LEP when transitioning home.Practice implicationsQPLs may improve Latino NICU infants’ healthcare outcomes.     

Developing a question prompt list for the oncology setting: A scoping review

ObjectiveThe purpose of this study was to provide an overview of existing methods used to develop a Question Prompt List (QPL) for an oncology setting.MethodsWe conducted a search of the literature published between 1999 and 2019 in five online databases followed by a hand search, and extracted data on the methods used to develop a QPL.ResultsA total of 21 studies were included. The review shows differences in the development of older QPLs (1999–2009) and current QPLs (2010–2019). However, most QPLs were developed using interviews or focus groups with patients and an expert session to review or adapt the QPL. Health professionals, patients, and researchers were included in nearly all the studies.ConclusionTo develop a QPL, it is important to combine several information sources and at least to involve health professionals, patients, and researchers in the development process. Review or evaluation steps can improve the appropriateness and acceptance of a QPL.Practice implicationsFurther research is needed to define the type of target population for new QPLs and to develop a framework for their development.     

The interactional consequences of ‘empowering discourse’ in intercultural patient education

ObjectivePatient education is an important part of nurses’ roles; however the inconsistent quality of communication skills, including those of registered nurses (RNs) from culturally and linguistically diverse (CALD) backgrounds, risk patient safety. Empowerment in patient education has been found to influence patients’ self-efficacy and participation in decision-making. Discourse analysis of a whole interaction is used in this paper to trace the consequences of patient education where empowering discourse is displayed by an RN from a CALD background.MethodsEthnographic techniques of participant observation and audio recordings of naturally occurring interactions between nurses from CALD backgrounds and their patients were conducted and analysed using interactional sociolinguistic (IS) and theme oriented discourse analytic approaches.ResultsThe interactional consequences of the nurse’s empowering approach are readily observable in the data. The RN addresses the patient’s education needs through a respectful encounter that illustrates the patient’s active involvement.ConclusionExamining the interactional consequences of empowering discourse demonstrates its effectiveness, and illustrates how empowering behaviour can be integrated into patient education, thus offering an alternative to traditional approaches.Practical implicationsGreater awareness of how to use empowering discourse will offer an alternative and consistent approach that enables nurses to facilitate patient-centred education.     

Identifying patient information needs about cancer clinical trials using a Question Prompt List

Objective

Question Prompt Lists (QPLs) have demonstrated significant promise in facilitating communication in general, surgical and palliative oncology settings yet have not been tested in the oncology clinical trial setting. We aimed to develop a targeted QPL for Clinical Trials (QPL-CT).

Methods

Breast, lung, and genitourinary cancer patients who either had (trial experienced) or had not (trial naive) participated in a clinical trial joined focus groups to help develop and explore the acceptability of a QPL-CT. Clinicians also participated in separated focus groups. Focus groups were audio-recorded and transcribed. We explored patients’ trial information needs and views about the utility of the QPL-CT.

Results

Patients focused on four trial information needs: understanding foundational information, conflict of interest issues and financial implications of trial participation. Of note, experienced patients need to personalize foundational information.

Conclusion

Patient information needs varied considerably and were influenced by trial experience. Patients valued the QPL-CT as an aid to gathering new trial information and ensuring that their information needs were met.

Practice implications

Physicians need to carefully elicit patient information needs and tailor trial information to meet these needs. The QPL-CT, may be of great benefit during clinical trial discussions.     

Shifts in patients’ question-asking behaviour between 2007 and 2016: An observational study of video-recorded general practice consultations

ObjectiveTo gain insight into patient participation in general practice by examining if and how patients’ question-asking behaviour has changed over the years (2007–2016).MethodsA random set of real-life video-recorded consultations collected in 2015–2016 (n = 437) was observed and compared with that of a former study in 2007–2008 (n = 533). Patients’ question-asking behaviour was coded using an adapted RIAS protocol containing six categories: medical condition/therapeutic regimen; psychosocial; social context; lifestyle; ask for opinion doctor; practical. GPs and patients completed questionnaires about their background characteristics. Data were analysed using multi-level analysis.ResultsPatients asked fewer questions in 2016 than in 2007. The type of question-asking behaviour changed significantly: in particular medical questions decreased while practical questions increased. Less educated patients asked significantly more practical questions than higher educated patients.ConclusionContrary to our expectations, patients’ question-asking has decreased in 2016 compared to 2007, while the average consultation length has increased. The type of questions shifted from medical to practical, especially in less educated patients. It seems that GPs’ professional role has expanded over time, since patients nowadays ask their GP more non-medical questions.Practice implicationsGPs probably could continue facilitating patient involvement by more frequently using partnership-building and supportive communication.     

Physician communication styles in initial consultations for hematological cancer

ObjectiveTo characterize practices in subspecialist physicians’ communication styles, and their potential effects on shared decision-making, in second-opinion consultations.MethodsTheme-oriented discourse analysis of 20 second-opinion consultations with subspecialist hematologist-oncologists.ResultsPhysicians frequently “broadcasted” information about the disease, treatment options, relevant research, and prognostic information in extended, often-uninterrupted monologs. Their communicative styles had one of two implications: conveying options without offering specific recommendations, or recommending one without incorporating patients’ goals and values into the decision. Some physicians, however, used techniques that encouraged patient participation.ConclusionsBroadcasting may be a suboptimal method of conveying complex treatment information in order to support shared decision-making. Interventions could teach techniques that encourage patient participation.Practice implicationsTechniques such as open-ended questions, affirmations of patients’ expressions, and pauses to check for patient understanding can mitigate the effects of broadcasting and could be used to promote shared decision-making in information-dense subspecialist consultations.     

“Speaking-for” and “speaking-as”: Pseudo-surrogacy in physician–patient–companion medical encounters about advanced cancer

Objective

To examine using audio-recorded encounters the extent and process of companion participation when discussing treatment choices and prognosis in the context of a life-limiting cancer diagnosis.

Methods

Qualitative analysis of transcribed outpatient visits between 17 oncologists, 49 patients with advanced cancer, and 34 companions.

Results

46 qualifying companion statements were collected from a total of 28 conversations about treatment choices or prognosis. We identified a range of companion positions, from “pseudo-surrogacy” (companion speaking as if the patient were not able to speak for himself), “hearsay”, “conflation of thoughts”, “co-experiencing”, “observation as an outsider”, and “facilitation”. Statements made by companions were infrequently directly validated by the patient.

Conclusion

Companions often spoke on behalf of patients during discussions of prognosis and treatment choices, even when the patient was present and capable of speaking on his or her own behalf.

Practice implications

The conversational role of companions as well as whether the physician checks with the patient can determine whether a companion facilitates or inhibits patient autonomy and involvement. Physicians can reduce ambiguity and encourage patient participation by being aware of when and how companions may speak on behalf of patients and by corroborating the companion's statement with the patient.     

Patients’ challenges,competencies, and perceived support in dealing with information needs – A qualitative analysis in patients with breast and gynecological cancer

ObjectivesThis study aimed to investigate challenges, competencies, and support in breast and gynecological cancer patients when dealing with information needs and how health literacy as an interplay of these factors might be improved.MethodsSemi-structured interviews were conducted with patients in acute care (n = 19), undergoing rehabilitation (n = 20) or attending self-help groups (n = 16). Interviews were analyzed using content analysis.ResultsChallenges: gain information according to own needs, internet as information source, information evaluation and decisions, doctor-patient communication, situationally limited information processing, difficult access to information. Competencies: self-regulation of information needs, media and social competencies, communication skills in the doctor-patient conversation, internet competencies, self-directed decisions according to own needs, interest/self-efficacy, previous knowledge, trust in the doctor. Support: by professionals (e.g., patient-centered communication), relatives (e.g., support during consultations), peers (e.g., exchange), facilities (e.g., clinics).ConclusionsOur findings provide insight into challenges and competencies relevant to patients’ health literacy and the influence of support. The individuality of the interplay highlights the relevance of an active patient role and patient-centered care.Practice implicationsPatients’ health literacy should be improved in (psycho)oncological work by both reducing challenges (e.g., by communication skills training, involving relatives) and promoting competencies (e.g., by needs- and competence-oriented information offers).     

Participation of patients and family members in healthcare services at the service and national levels: A lesson learned in Dublin,Ireland

ObjectiveIdentify the current amount and intensity of patient and family participation at the patient, service and national levels from a diabetes and a psychiatric service perspective. Establish the current level of support for greater participation and related characteristics.MethodResearcher-administered questionnaires were conducted with 738 patients and family members in an outpatient type 2 diabetes service and an outpatient psychiatric service, both in Dublin, Ireland.ResultsPatient and family participation at the service and national levels are restricted to the provision of information. Typically no involvement in discussions or the decision -making process is reported. The majority of participants favour greater patient participation at the service level (537/669; 80.3%) and the national level (561/651; 86.2%). Greater support for patient and family member participation is significantly associated with participant’s age, service satisfaction and level of education.ConclusionPatient and family participation is greatest at the patient level. The majority of patients and family members support greater participation at the service and national levels.Practice implicationsThe best way to implement participation needs to be identified. There needs to be a greater focus on participation at the service level. The role of family members also needs to be investigated further.