Developing a model of decision-making about complementary therapy use for patients with cancer: A qualitative study

ObjectiveTo improve our understanding of patient participation in health care consultations and decision-making by exploring a consultation that lies at the interface between mainstream care and complementary therapies.MethodsThirty-four holistic consultations were observed at centres offering complementary therapies for cancer, followed by interviews with patients and focus groups with professionals.ResultsA model of decision-making about complementary therapy use emerged from the data: ‘Advice: Assessor led decision’, ‘Confirmation: Joint decision’, ‘Access: Patient-led decision’ and ‘Informed: Patient-led decision’. Decision-making style was contingent on identifiable communication strategies in the preceding information-sharing and discussion phases of the consultation.ConclusionThis study confirms the importance of gauging patients’ preferences for level of participation in decision-making. Models of consultations are generally based on the assumption that a greater degree of patient participation is a good thing that access to information and decision-making power is sought by all patients. Data from this study suggest that, in this context at least, this is not necessarily the case. The study also stresses the dynamic nature of the consultation, in which roles are fluid rather than fixed.Practice implicationsInsight were gained into professionals’ communication strategies and patients’ role preferences in decision-making, which may be applicable more widely.     

Modeling patient-centered communication: Oncologist relational communication and patient communication involvement in breast cancer adjuvant therapy decision-making

Objective

Relational communication refers to those messages communicators naturally express that carry meaning about the type and quality of relationship they share. It is expected that patients of oncologists who express positive relational communication will be more communicatively involved in their office visits, and regret their decision for adjuvant therapy following surgery less.

Methods

One hundred eighty (180) audio-recorded discussions between oncologists (n = 40) and early stage (I–III) breast cancer patients were coded with the Siminoff Communication Content and Affect Program (SCCAP). The data were used to test the relationships between patient demographics, oncologist relational communication, patient communication involvement and self-reported patient decision regret.

Results

After controlling for clinician clusters, oncologists’ verbal (i.e., confirming messages) and nonverbal (i.e., direct and inclusive speech) relational communication is indirectly associated with lower patient decision regret via the mediating effect of greater patient communication involvement.

Conclusion

Clinician relational communication provides an influential affective climate for decision-making that appears to have important effects on patients’ decision confidence.

Practice implications

Clinicians should recognize the potential of their own relational messages to facilitate patients’ communication involvement in decision-making during cancer care.     

The health professional-patient-relationship in conventional versus complementary and alternative medicine. A qualitative study comparing the perceived use of medical shared decision-making between two different approaches of medicine

Objective

To explore differences between conventional medicine (COM) and complementary and alternative medicine (CAM) regarding the attitude toward and the perceived use of shared decision-making (SDM) from the health professional perspective.

Methods

Thirty guideline-based interviews with German GPs and nonmedical practitioners were conducted using qualitative analysis for interpretation.

Results

The health professional–patient-relationship in CAM differs from that in COM, as SDM is perceived more often. Reasons for this include external context variables (e.g. longer consultation time) and internal provider beliefs (e.g. attitude toward SDM). German health care policy was regarded as one of the most critical factors which affected the relationship between GPs and their patients and their practice of SDM.

Conclusion

Differences between COM and CAM regarding the attitude toward and the perceived use of SDM are attributable to diverse concepts of medicine, practice context variables and internal provider factors. Therefore, the perceived feasibility of SDM depends on the complexity of different occupational socialization processes and thus, different value systems between COM and CAM.

Practice implications

Implementation barriers such as insufficient communication skills, lacking SDM training or obedient patients should be reduced. Especially in COM, contextual variables such as political restrictions need to be eliminated to successfully implement SDM.     

The information needed by Canadian early-stage prostate cancer patients for decision-making: Stable over a decade

Objective

To compare information needs for decision-making by similar cohorts of Canadian early-stage prostate cancer patients, at two time points a decade apart.

Methods

Two patient groups (1st—1996, 2nd—2005), diagnosed within the previous 2 years, were surveyed. They rated the importance of having each of 92 questions addressed, using options: essential, desired, no opinion, or avoid. For each essential or desired question, respondents indicated their reasons for wanting the question addressed: to understand, decide, plan, or other.

Results

The two groups had similar response rates and demographics. The mean number of questions rated essential for decision-making/patient trended toward more by the later group (13 questions vs 19 questions) but, more importantly, there was wide variation within each group (0–68 questions vs 0–92 questions). The percentage of essential ratings for decision-making per question was highly correlated between the groups. Although almost every question was essential for decision-making to >1 patient, no question was essential to >50% in either group.

Conclusion

At both times, most Canadian early-stage prostate cancer patients wanted some information specifically for decision-making, however, both the amount and exact details varied considerably amongst patients.

Practice implication

Decision support for these patients should continue to accommodate wide variation in their information needs.     

Determination of parameters affecting the use of complementary and alternative medicine in cancer patients and detection of prevalence of use

This study was conducted to find out the frequency of complementary and alternative medicine (CAM) use that could lead to troubles in patient health and in applied standard therapy protocols when used improperly, which method is used, the reasons for use and from which resources the information about this topic were obtained. A questionnaire consisting of 28 questions was applied to 195 patients with cancer diagnosis by a face-to-face interview. The obtained data were assessed with SPSS 11.5 program. Out of 195 cancer patients, 100 (51.3%) were using CAM and 48.7% (n=95) were not. The most commonly used agent was nettle (72%). This was followed by herbal teas (21%), grape molasses (20%) and black seed (20%). The frequency of CAM use was found higher in those under age 50, in literate people, in those working during the diagnosis stage and having disease at the later stage. While CAM was commonly recommended by friends and relatives of the patients (73%), this ratio was only 5% for health professionals. While 51.3% of all patients were gathering information about CAM, 75% of those actually using CAM gathered information about it. Whilst information was gathered mostly from the relatives of patients and tamperers (47%), it can be gathered from physicians only with a ratio of 10%. Cancer patients use CAM and they gather information mainly from unreliable sources rather than physicians. Although the primary information source should be physicians, the ratio for this was very low (10%). We suggest that physicians should spend more time in gathering correct information and sharing them with their patients for a better guidance.     

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory.MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles.ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome.ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions.Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.     

Negotiating complementary and alternative medicine use in primary care visits with older patients

Objective

To empirically investigate the ways in which patients and providers discuss Complementary and Alternative Medicine (CAM) treatment in primary care visits.

Methods

Audio recordings from visits between 256 adult patients aged 50 years and older and 28 primary care physicians were transcribed and analyzed using discourse analysis, an empirical sociolinguistic methodology focusing on how language is used to negotiate meaning.

Results

Discussion about CAM occurred 128 times in 82 of 256 visits (32.0%). The most frequently discussed CAM modalities were non-vitamin, non-mineral supplements and massage. Three physician–patient interactions were analyzed turn-by-turn to demonstrate negotiations about CAM use. Patients raised CAM discussions to seek physician expertise about treatments, and physicians adopted a range of responses along a continuum that included encouragement, neutrality, and discouragement. Despite differential knowledge about CAM treatments, physicians helped patients assess the risks and benefits of CAM treatments and made recommendations based on patient preferences for treatment.

Conclusion

Regardless of a physician's stance or knowledge about CAM, she or he can help patients negotiate CAM treatment decisions.

Practice implications

Providers do not have to possess extensive knowledge about specific CAM treatments to have meaningful discussions with patients and to give patients a framework for evaluating CAM treatment use.     

Teaching patients how to talk with biomedical providers about their complementary and alternative medicine use

Objective

The goal was to examine the feasibility and impact of a face-to-face communication skills training intervention based on a current public health campaign to encourage patients to talk about complementary and alternative medicine (CAM) with their biomedical health providers.

Methods

Current CAM users were invited to complete a survey about current/past CAM use and communication with biomedical providers before beginning a communication skills training workshop. In the 6-month period following the training, participants were asked to record information on any CAM conversations with those providers.

Results

Of the 38 participants who received training, 32 finished the entire study. Over half of those participants reported discussing CAM in post-training visits with biomedical providers. Participants initiated the conversation in most cases, and were more likely to disclose CAM use than they were to ask questions about CAM. Participants who talked about CAM were significantly more likely to perceive CAM as relevant to their visit, compared with individuals who did not talk about CAM.

Conclusions

Participants positively evaluated this patient communication workshop. Consistent with previous research, most CAM conversations were patient-initiated.

Practice implications

These findings reinforce the importance of patient education interventions for improving patient–provider communication in general, and CAM communication specifically.     

Effectively discussing complementary and alternative medicine in a conventional oncology setting: Communication recommendations for clinicians

Objective

Justifiable concerns around the use of complementary and alternative medicines (CAM) amongst cancer patients are becoming increasingly prominent. The aim was to develop evidence-based guidelines to assist oncology health professionals (HP) to have respectful, balanced and useful discussions with patients about CAM.

Methods

A systematic review was conducted, covering relevant literature from 1997 to 2007. The level of evidence was rated using a standardized rating system. The evidence was qualitatively synthesised into structured recommendations by a multidisciplinary team including a consumer.

Results

The search identified 78 original papers; 36 directly related to discussing CAM. No randomized controlled trials specifically addressing the methods or benefits of discussing CAM were identified. Evidence based guidelines are presented as a sequence of recommended steps: (1) Elicit the person's understanding of their situation; (2) Respect cultural and linguistic diversity and different epistemological frameworks; (3) Ask questions about CAM use at critical points in the illness trajectory; (4) Explore details and actively listen; (5) Respond to the person's emotional state; (6) Discuss relevant concerns while respecting the person's beliefs; (7) Provide balanced, evidence-based advice; (8) Summarize discussions; (9) Document the discussion; (10) Monitor and follow-up.

Conclusion

This represents the first comprehensive guidelines for discussing CAM.

Practice implications

Given the concerns surrounding CAM use, it is critical to encourage informed decision-making about CAM and ultimately, improve outcomes for patients.     

Medical treatment decision-making in rural cancer patients: A qualitative systematic review and meta-synthesis

ObjectiveRural cancer patients have unique care needs which may impact upon treatment decision-making. Our aim was to conduct a qualitative systematic review and meta-synthesis to understand their perspectives and experiences of making treatment decisions.MethodsA systematic search of MEDLINE, PsycINFO, CINAHL and RURAL was conducted for qualitative studies in rural cancer patients regarding treatment decision-making. Articles were screened for relevance, and data from the included articles were extracted and analysed using meta-thematic synthesis.ResultsTwelve studies were included, with 4 themes and 9 subthemes identified. Many studies reported patients were not given a choice regarding their treatment. Choice, if given, was influenced by personal factors such as finances, proximity to social supports, convenience, and their personal values. Patients were also influenced by the opinions of others and cultural norms. Finally, it was reported that patients made choices in the context of seeking the best possible medical care and the patient-clinician relationship.ConclusionsIn the rural context, there are universal and unique factors that influence the treatment decisions of cancer patients.Practical implicationsOur findings are an important consideration for clinicians when engaging in shared decision-making, as well as for policymakers, to understand and accommodate the unique rural perspective.     

How information about other people's personal experiences can help with healthcare decision-making: a qualitative study

Objective

To investigate people's views of using ‘general facts’ and information about other people's ‘personal experiences’ for health-related decision-making.

Methods

Sixty-two people, who between them had experience of five different focal health issues, participated in 12 focus groups and 9 interviews. Exploration of uses of the two types of information was supported by discussion of illustrative excerpts.

Results

There was less discussion of ‘general facts’; participants thought it obvious that good decisions required these. Participants reported having used ‘personal experiences’ information to: recognise decisions that needed consideration; identify options; appraise options and make selections (including by developing and reflecting on their reasoning about possible choices); and support coping strategies. Their inclination to use ‘personal experiences’ information was apparently moderated by assessments of personal relevance, the motives of information providers and the ‘balance’ of experiences presented.

Conclusion

People can use ‘personal experiences’ information in various ways to support their decision-making, and exercise some discrimination as they do.

Practice implications

‘Personal experiences’ information may help people in a number of ways in relation to decision-making. However, ‘personal experiences’ information does not replace the need for ‘general facts’ and care should be taken when it is used in resources for patients.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

Triadic agreement about advanced cancer treatment decisions: Perceptions among patients,families, and oncologists

ObjectivesWhen patients make cancer treatment decisions, they consider the needs and preferences of family caregivers and clinicians. We examined how much all three triad members agreed about goals of treatment and caregivers’ influence on decision-making.MethodsWe surveyed 70 triads of patients, caregivers, and oncologists who had recently made an advanced cancer treatment decision. We assessed each triad member’s perception of the goal of treatment and the caregiver’s influence on the decision. Participants also completed scales related to decisional conflict, satisfaction, and regret.ResultsIn only 28/70 triads (40%), all three agreed on the goal of treatment with the most common goal being to live longer (n = 22). Whereas patients and caregivers tended to think the goal was to cure or live longer, oncologists were less optimistic. In only 22 triads (31%), all three agreed on how much influence the caregiver had on decision-making. Oncologists tended to underestimate caregiver influence. Patients and caregivers had low decisional conflict (M=15.40, SD=4.51; M=17.09, SD=6.34, respectively).ConclusionsAdvanced cancer treatment decision-making occurs amid incomplete understanding among patients, caregivers, and oncologists.Practice implicationsConfirming agreement about goals of care and influence on treatment decision-making may increase the likelihood of goal-concordant care throughout the illness trajectory.     

Perceiving integration of a complementary medicine service within a general surgery department through documentation of consultations: A thematic analysis

Objective

This study aims to examine the meaning and practical implications of integration of a complementary medicine-based surgery service in a hospital setting (CISS – Complementary/Integrative Surgery Service) through analysis of consultation reports associated with this service.

Methods

Thematic analysis was used to evaluate CISS consultation reports in a hospital electronic consultant charting system during the first half year of the service's activity.

Results

304 consultation reports were analyzed. Nurses initiated significantly more consultations than physicians (55% vs 7%). Consultation requests were gradually more focused on specific symptoms, possibly manifesting a better understanding of the scope of complementary medicine in the surgery setting. CISS practitioners responded in more biomedical language over time, albeit offering a more holistic perspective regarding patients’ needs as well as clarifications regarding the nature of the treatment they provided.

Conclusions

Diverse communication patterns in consultations evolved over time representing dynamics in multiple levels of integration of the CISS.

Practice implications

Documented communication through consultations can provide a window to the process of integration of complementary medicine-based services in health systems.     

Dumping the information bucket: A qualitative study of clinicians caring for patients with early stage non-small cell lung cancer

ObjectiveTo evaluate the quality of patient-clinician communication and shared decision making (SDM) when two disparate treatments for early stage non-small cell lung cancer (NSCLC) are discussed.MethodsWe conducted a qualitative study to evaluate the experiences of 20 clinicians caring for patients with clinical Stage I NSCLC prior to treatment, focusing on communication practices. We used directed content analysis and a patient-centered communication theoretical model to guide understanding of communication strategies.ResultsAll clinicians expressed the importance of providing information, especially for mitigating patient worry, despite recognition that patients recall only a small amount of the information given. When patients expressed distress, clinicians exhibited empathy but preferred to provide more information in order to address patient concerns. Most clinicians reported practicing SDM, however, they also reported not clearly eliciting patient preferences and values, a key part of SDM.ConclusionCommunication with patients about treatment options for early stage NSCLC primary includes information giving. We found that only a few communication domains associated with SDM occurred regularly, and SDM may not be necessary in this clinical context.Practice implicationsClinicians may need to incorporate nurse navigators or more written materials for effectively discussing potentially equivalent treatment options with their patients.     

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.     

Correlates of preferring a passive role in decision-making among patients with schizophrenia or bipolar disorder

ObjectiveTo assess the factors associated with the persistence of clinician-led style in the therapeutic relationship in cases of serious mental illness, and the conditioning factors that the patients identify as determinants of their health.MethodAssessment of preferences in the decision-making process and health-related control locus of 107 outpatients with DSM-5 diagnosis of schizophrenia or bipolar disorder. Demographic and clinical information was also obtained through review of available records and using several scales.Results64.4 % patients preferred to adopt a passive role in the therapeutic relationship. In the multivariate analysis, the preference of playing a passive role in the decision-making process was significantly associated with the elderly, being disabled, or the view that one’s health depends on doctors (AUC ROC value: 0.80).ConclusionsPatients with severe mental illness more frequently preferred a passive role in the decision-making process. We found several factors associated with a preference for the “expert role” model.Practice implicationsThe identified factors may permit care to be tailored to the most probable expectations as regard decision-making. Since the populations concerned may be vulnerable and suffer inequalities in the provision of health services, promoting participation in the care process could help improve clinical parameters ethically.     

Development of a questionnaire to assess communication preferences of patients with chronic illness

Objective

The objectives of the study are to develop a patient-oriented and theory-based questionnaire on the communication preferences of chronically ill patients (KOPRA questionnaire) and to carry out psychometric testing of the instrument.

Methods

Following two preliminary studies (focus groups, cognitive interviews), a total of 472 patients with chronic back pain or chronic ischemic heart disease were surveyed. In the main sample (N = 333), communication preferences regarding the physician were assessed; for N = 89 (or N = 50) patients, preferences regarding nursing staff (or therapists) were analyzed. Psychometric testing was done with respect to unidimensionality, fit to an item response theory (IRT) model, and for reliability. The questionnaire was developed and validated in German.

Results

In the physician version with a total of 32 items, there are four scales (“Patient participation and patient orientation”, “Effective and open communication”, “Emotionally supportive communication”, and “Communication about personal circumstances”) that are unidimensional, fulfill the demands for a 1-parameter IRT model, and are reliable (Cronbach's alpha between .80 and .92). The psychometric properties with respect to nursing staff and therapists are slightly worse.

Conclusion

The KOPRA questionnaire has good psychometric properties.

Practice implications

Clinical use of the questionnaire appears useful to determine patients’ communication preferences.     

Treatment decision-making in the medical encounter: Comparing the attitudes of French surgeons and their patients in breast cancer care

Objectives

To explore attitudes of French surgeons and their patients towards treatment decision-making (TDM) in the medical encounter.

Methods

Surgeons involved in early stage breast cancer and their patients treated in a French cancer care network received a cross-sectional survey questionnaire containing examples of four different approaches to TDM: paternalistic, “some sharing”, informed TDM and, shared TDM.

Results

Surgeons’ interaction styles were clearly distributed among paternalistic, shared and mixed. The paternalistic approach seemed to be associated with private rather than public practice and with less professional experience. Patients reported a rather low level of participation in TDM, varying by socio-demographic characteristics. One third of patients were dissatisfied with the way their treatment decision had been made.

Conclusion

Most surgeons reported adopting the “some sharing” approach. However, one patient out of three reported that they would have liked to participate more in the TDM process.

Practice implications

Surgeons need to ask patients what their preferences for involvement in TDM are and then think about ways to accommodate both their own and patients’ preferences regarding the TDM process to be used in each encounter. In addition, decision aids could be offered to surgeons to help them discuss treatment options with their patients.