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.     

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.     

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.     

The influence of a question prompt list on patient-oncologist information exchange in an African-American population

ObjectivesQuestion Prompt Lists (QPL) increase patient active participation in oncology interactions, but questions remain regarding how QPLs influence patient-oncologist information exchange. We examined how a QPL influenced information exchange during oncology interactions with African-American patients.MethodsData were self-reports and video recordings from a parent study testing the effects of a QPL in the outpatient clinics of two urban cancer hospitals. In this secondary analysis, we investigated which QPL questions patients identified as ones they wanted to ask their oncologists, how frequently patients/companions used patient active participation statements to seek information related to each QPL question, whether oncologists provided QPL-related information unprompted or prompted by patients/companions, and how frequently patients’ QPL-related information needs were addressed or unaddressed.ResultsThe QPL influenced information exchange by increasing patients’ and companions’ (if present) prompting for QPL-related information from their oncologists. Patients/companions most often prompted for QPL-related information about side effects and patient experience.ConclusionThis study builds on prior research on QPL interventions by expanding the object of study to information exchange and by analyzing patients’ information needs.Practice implicationsThis research demonstrates that a QPL supports patient/companion participation in oncology consultations by making information exchange more interactive.     

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.     

Implementing decision and communication aids to facilitate patient-centered care in breast cancer: A case study

Objective

Decision Services (DS) provide support for breast cancer patients at the University of California, San Francisco to help ensure patient-centered care.

Methods

We examined a case study to explore whether our program practices matched our program theory, and what the patient in the case thought was effective and ineffective about our decision support interventions.

Results

The patient relied on a decision aid to educate her husband about her condition; felt that her question list contributed to a productive and efficient consultation with her oncologist; credited an audio-recording with helping her remember to follow-up with a genetic counselor; and reviewed the consultation summary 30 days into treatment in order to reflect on her decision. The patient rated the interventions highly on surveys, and experienced desirable reductions in decisional conflict, and improvements in knowledge. However, the question-prompting intervention was associated with a small decrease in self-efficacy, and the patient criticized the decision aid for omitting mention of a prognostic test.

Conclusion

This case illustrates how decision support interventions can be deployed to promote patient-centered care.

Practice implications

Breast care centers should consider distributing decision aids and assisting patients in listing questions, recording consultations, and obtaining written consultation summaries.     

Applying a deliberation model to the analysis of consultations in haemophilia: Implications for doctor-patient communication

ObjectiveLiterature highlights the importance of communication in order to achieve patient’s adherence. However, the specific dialogical components likely to favor patient adherence are not clear. In this study, the deliberation dialogue model was applied as an ideal model of optimal deliberation to real physician-patient consultations in the field of hemophilia in order to identify misalignments with the model and possible improvements in physician-patient communication.MethodsBy applying the deliberation model, we analyzed a corpus of 30 check-up consultations in hemophilia.ResultsOf 30 consultations, 24 (80%) contained 43 deliberation dialogues. Twenty-two (51%) deliberation dialogues were complete (e.g., included an opening stage with a clear statement of the problem, an argumentation stage in which both physician and patient participated, and a closing stage with an explicit patient commitment), whereas 21 (49%) deliberations were incomplete. These featured: Lack of/partial argumentation stage; Lack of closing stage; Lack of/partial argumentation stage and lack of closing stage.ConclusionsThe deliberation model can be applied to empirical data and allows to identify causes for suboptimal realizations of deliberation.Practice implicationsOnce a problem is acknowledged, attention could be paid to engage hemophilic patients in the argumentation stages and elicit their explicit commitment.     

Visualizing risks in cancer communication: A systematic review of computer-supported visual aids

ObjectiveHealth websites are becoming important sources for cancer information. Lay users, patients and carers seek support for critical decisions, but they are prone to common biases when quantitative information is presented. Graphical representations of risk data can facilitate comprehension, and interactive visualizations are popular. This review summarizes the evidence on computer-supported graphs that present risk data and their effects on various measures.MethodsThe systematic literature search was conducted in several databases, including MEDLINE, EMBASE and CINAHL. Only studies with a controlled design were included. Relevant publications were carefully selected and critically appraised by two reviewers.ResultsThirteen studies were included. Ten studies evaluated static graphs and three dynamic formats. Most decision scenarios were hypothetical. Static graphs could improve accuracy, comprehension, and behavioural intention. But the results were heterogeneous and inconsistent among the studies. Dynamic formats were not superior or even impaired performance compared to static formats.ConclusionsStatic graphs show promising but inconsistent results, while research on dynamic visualizations is scarce and must be interpreted cautiously due to methodical limitations.Practice implicationsWell-designed and context-specific static graphs can support web-based cancer risk communication in particular populations. The application of dynamic formats cannot be recommended and needs further research.     

Incorporating shared decision making into communication with older adults with cancer and their caregivers: Development and evaluation of a geriatric shared decision-making communication skills training module

ObjectiveThe purpose of this study was to evaluate a Communication Skills Training (CST) module for health care providers (HCPs) applying a shared decision-making approach to a meeting with an older adult with cancer and his/her family.MethodsNinety-nine HCPs from community-based centers, cancer centers, and hospitals in the Northeastern U.S. who worked primarily with older adult patients participated in a CST module entitled Geriatric Shared Decision Making. Participants completed pre- and post-training Standardized Patient Assessments (SPAs) and a survey on their confidence in and intent to utilize skills taught.ResultsResults indicated high HCP satisfaction with the module, with over 95 % of participants reporting high endorsement to all five evaluation items. HCPs’ self-efficacy in utilizing communication skills related to geriatric shared decision making significantly increased pre- to post-training. In standardized patient assessments among a subset of providers (n = 30), HCPs demonstrated improvements in three shared decision-making skills: declare agenda, invite agenda, and check preference.ConclusionA geriatric shared decision-making CST workshop for HCPs showed feasibility, acceptability, and improvement in self-efficacy as well as skill uptake.Practice implicationsThis Geriatric Shared Decision-Making CST module provides an intervention for improving provider-patient-family member communication in the context of cancer care for older adults.     

Promoting shared decision making in advanced cancer: Development and piloting of a patient communication aid

Objective

To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.

The validity of education and guidance for clinical communication in cancer care: Evidence-based practice will depend on practice-based evidence

Objective

The validity of clinical communication skills education and guidance for cancer care is sometimes portrayed as self-evident. This view needs re-examination in light of critiques of the concept of communication skills.

Methods

We critically examine principles that steer communication teaching and guidance in cancer care and draw on research that can inform the next generation of development in this field.

Results

Unlike other areas of clinical skills, communication is highly contested. Any instance of communication is open to multiple interpretations; expert principles of communication are imprecise and often contradictory. The concept of communication skills will constrain development, because of its implication that universal, expert-defined components of communication are the building blocks of clinical relationships. Research on communication in practice indicates insights that could enrich future education and guidance.

Conclusions

Communication experts have more to learn from practitioners and patients than is commonly appreciated. Inductive, qualitative research should incorporate patient and practitioner perspectives as well as observations of communication.

Practice implications

Solutions to communication dilemmas might be found in detailed study of communication in practice, rather than in current expert principles. Incorporating such evidence will help to ensure the continued authority of communication curricula and guidance as evidence-based and patient-centred.     

A pre-visit website with question prompt sheet for counselees facilitates communication in the first consultation for breast cancer genetic counseling: findings from a randomized controlled trial

PurposeThe initial breast cancer genetic counseling visit is mainly educational, with large amounts of relatively standard information and little counselee participation. Counselors might provide more counselee-specific information if counselees would participate more. A pre-visit website providing computer-tailored information and a question prompt sheet (QPS) might help counselees to pursue a more active role.MethodsCounselees were randomized to receive usual care (UC) or UC plus the pre-visit website. The QPS questions were sent to the counselor before the visit. All counselees completed a baseline questionnaire, and visits were videotaped.ResultsIntervention-group counselees (n = 102) did not ask more questions than UC-group counselees (n = 90). However, counselees in the intervention group more often shared their agenda (B = 10.37; confidence interval (CI) 2.68–18.06; P = 0.01), directed the communication (B = 0.41; CI 0.28–0.53; P = 0.01), and paraphrased the counselors’ words (B = 5.18; CI 0.43–9.92; P = 0.03). Counselors introduced and answered the QPS questions. As a result, they provided more information about the topics of these questions, and the information provided was more specific to whether there was an indication for DNA testing.ConclusionA pre-visit website with QPS helped counselees to communicate more assertively. As a result, the information provided was more counselee specific, without affecting the visit duration.Genet Med 2012:14(5):535–542     

Health beliefs and communication in the travel clinic consultation as predictors of adherence to malaria chemoprophylaxis

Objectives: The objectives were, first, to determine whether adherence to malaria prophylaxis could be predicted by (i) health beliefs specified by the Health Belief Model and the Theory of Planned Behaviour, and (ii) communication during the consultation in a travel clinic; and secondly, to examine the impact of the consultation in changing travellers' health beliefs. Design: A prospective study using regression analysis. Methods: The participants were 130 consecutive travellers attending a travel medicine clinic. Health beliefs were measured pre‐ and post‐consultation. The consultations were coded from audiotape using the Roter Interaction Analysis System and a content analysis method recording discussion about malaria and prophylaxis. Adherence was assessed by a follow‐up telephone interview. Results: Perceived susceptibility to malaria, perceived benefits of medication and intentions to adhere increased significantly as a result of the consultation, and the perceived permanent nature of side effects reduced significantly. At follow‐up (N = 107), 62% reported full adherence, 25% partial adherence and 12% poor/no adherence. A multinomial logistic regression analysis revealed that perceived benefits of medication, length of stay, health professional discussion about adherence and travellers' questions and statements independently predicted reported adherence. Conclusions: Health beliefs and communication significantly predicted adherence in this setting. The findings also suggested qualitative differences between travellers who adhered fully, partially or poorly. Although the clinic consultation had a positive impact, emphasizing benefits of medication and resolving potential barriers to adherence could improve adherence in the population.     

What to listen for in the consultation. Breast cancer patients’ own focus on talking about acceptance-based psychological coping predicts decreased psychological distress and depression

Objective

To analyze whether qualitative themes in breast cancer patients’ self-presentations predicted symptoms of psychological distress and depression in order to improve the consultation process.

Methods

Ninety-seven breast cancer patients gave unstructured, 10-min self-presentations at their first consultation in a clinical registered trial (CRT identifier: NCT00990977). Self-presentations were categorized thematically and the most prevalent themes investigated as predictors for scores on the symptom check-list 90-revised (SCL-90-R) and the center for epidemiological studies depression scale (CES-D).

Results

Among the qualitative themes, only the percentage of words spent on talking about ‘Acceptance-based psychological coping’ was related to symptoms. In regression models controlling for age, education and time since diagnosis, a stronger focus on acceptance-based coping predicted less psychological distress and depression, respectively. A cross-validation including only the first few minutes of speech per patient confirmed these results and supported their practical utility in health consultations.

Conclusion

Patients’ focus on acceptance-based coping significantly predicted decreased psychological distress and depression, respectively. No other qualitative themes predicted symptoms. Doctor–patient studies may benefit from combined qualitative–quantitative methods.

Practice implications

While quantitative symptom assessment is important for a consultation, health care providers may improve their understanding of patients by attending to patients’ presentations of acceptance-based psychological coping.     

Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams

Objective

To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).

Expanding the reach of decision and communication aids in a breast care center: A quality improvement study

Objective

One academically based breast cancer clinic implements decision and communication aids as part of routine clinical care. This quality improvement study aimed to expand reach of these supportive materials and services with budget-neutral program changes.

Methods

We used program theory and continuous quality improvement to design changes to our program. We calculated reach as the number of new patient visits for which we administered decision and communication aids. We compared reach before and after the program changes.

Results

Program changes included: reassigning program outreach tasks from over-committed to under-utilized personnel; deploying personnel in floating rather than fixed schedules; and creating a waitlist so service delivery was dynamically reallocated from overbooked to underbooked personnel. Before these changes, we reached 208 visitors with decision aids, and 142 visitors with communication aids. Changes were associated with expanded reach, culminating in program year 2008 with the delivery of 936 decision aids and 285 communication aids.

Conclusions

We observed over a fourfold increase in decision aid reach and a twofold increase in communication aid reach. We attribute increases to recent program changes.

Practice implications

This study illustrates how program theory and quality improvement methods can contribute to expanded reach of decision and communication aids.     

Integrative qualitative communication analysis of consultation and patient and practitioner perspectives: towards a theory of authentic caring in clinical relationships

Objective

We developed a method whereby relationships can be studied simultaneously from the perspectives of each party and researchers’ observations of their dialogue. Then we used this method to study how to recognise authentic, caring clinical relationships.

Methods

Participants were 20 patients who had recently received surgery for breast cancer and nine surgeons with whom they had a post-operative consultation. We audiorecorded consultations, before interviewing patients and surgeons about their perceptions of the consultation and each other. Cross-case qualitative analyses (analysing consultations and surgeon and patient interviews, respectively) were supplemented by integrative, within-case analysis.

Results

Surgeons and patients described their relationship as personal and emotional, but emotional talk was absent from consultations. For patients and surgeons, their relationship depended, instead, on surgeons’ expertise and character.

Conclusion

Our integrative approach suggested that authentic caring in these relationships lay in practitioners’ conscientious execution of their role and, contrary to currently influential views, not in an explicit emotional engagement.

Practice implications

Relationships between patients and practitioners cannot be described adequately using analyses of interactions between them. Researchers will need to triangulate between these observations and the patient and practitioner perspectives in order to understand what makes for authentically caring relationships.     

Improving patient education by an in-service communication training for health care providers at a cancer ward: Communication climate,patient satisfaction and the need of lasting implementation

Objective

To show the effects of an in-service communication training for health care providers at a cancer ward, to improve the quality and quantity of the patient education, and patient satisfaction with the care received.

Methods

A 3-year in-service communication training was held at a cancer ward. Pre- and post-data were collected about the quality and quantity of the communication of nurses, physicians and other health care providers (HCPs) towards patients and colleagues (n = 22) as well as the satisfaction of the patients with the quality of care (n = 90).

Results

The communication training raised significantly the quality and quantity of the communication towards patients and with colleagues. Also patient satisfaction with the quality of care increased. However, the long-term implementation of the benefits was proved disappointing.

Conclusion

In-service communication training is an important means for the long-term improvement of the quality of patient education at nursing departments in hospitals. Lasting implementation of the benefits however requires attention to organizational obstacles, budgetary conditions, leadership factors at the ward, and the application of an organizationally oriented theoretical framework.

Practice implications

Improvement of patient education at nursing wards does not only require educational means, organizational facilities and professional training, but can be improved too by in-service communication training, which increases the quality of the patient-centered care. An organizational oriented change-strategy is needed to ensure the implementation produces lasting effects.