Commentary: At the Center of Decision Making in Mental Health Services and Interventions Research: Patients,Clinicians, or Relationships?

Wills and Holmes-Rovner (2006) highlight the fact that despite growing interest in the role of patient preferences and shared decision making with clinicians in the general health services research community, relatively little is known about the impact of these preferences and processes on actual decisions, service delivery engagement, or intervention outcomes in the mental health field. This commentary expands on three important points raised in Wills and Holmes-Rovner's article: (a) the need for more and better research on values assessment, (b) contextual factors in the decision-making process, and (c) the measurement of patient preferences regarding their level of involvement in decision making.     

Integrating Interventions and Services Research: Progress and Prospects

Although interventions and services research paradigms have distinct historical roots and methodologic traditions, both aim to improve mental health services for adults and youth. This article introduces a series of articles that represent examples of innovative and integrative (i.e., integration of services and interventions research) research efforts. This work involves an integration of the interventions and services research paradigms to address the difficult questions related to improving mental health services in diverse settings. Each of the four articles takes a distinctly different path in bringing together the interventions and services research traditions, with foci ranging from (a) using psychotherapy measurement tools to assess the content of usual care practice in collaboration with providers, (b) adapting randomized clinical trial design to fit nonmental healthcare settings while addressing relevant outcomes, (c) understanding and incorporating patient preferences into treatment research, and (d) identifying organization-level variables relevant to interventions development and implementation. In the introductory article, we provide a brief précis concerning the interventions and services research traditions, highlight how each of the four articles illustrates an innovative integration of interventions and services research, and discuss additional future directions beyond the work introduced in this series.     

Patient comprehension of information for shared treatment decision making: state of the art and future directions

How does the way that information is presented potentially influence patients' consent for health treatments, in a shared decision making process? The goal of this paper is to present an overview of selected recent literature concerning patient health information presentation/use for treatment decision making. Recent work with patient populations has begun to extend early cognitive psychological work showing systematic biases in thinking. Key research findings are organized by type of format (probability, graphic, and qualitative/quantitative dimensions). The applied literature on this topic is amenable to only limited integration in regard to key findings, and relatively few novel approaches to improving information comprehension have been described in the health literature. Promising approaches being proposed, developed, and tested are described, such as enhanced-access computerized patient choice modules, "debiasing" techniques, and tailoring of information. Additional theoretical and practical issues are discussed, as well as selected policy implications of current knowledge.     

A systematic review of factors influencing decision-making in adults living with chronic kidney disease

Objective

To identify factors influencing patient involvement in decision-making in the context of chronic kidney disease (CKD) and effective interventions to support their decision-making needs.

Methods

A systematic review included studies and decision support tools that involved: (1) adults with CKD, (2) studies published from 1998–2008; and (3) a focus on patient decision-making needs, and/or barriers and facilitators to shared decision-making. Studies were quality appraised.

Results

Forty studies were appraised. These studies mainly focused on the decisions patients with CKD faced around the choice of renal replacement therapy and withholding/withdrawing dialysis. Moreover, studies typically focused on health care professional's provision of information about the decision rather than identifying decisional conflict and supporting patients in decision-making. No studies were found that identified the patient's point of view about factors that might influence or inhibit quality decision-making. Factors influencing CKD patient's participation in decision included: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control; and (4) personal importance on benefits and risks. Of the four patient decision aids identified, none had been evaluated for effectiveness.

Conclusion

Patients with CKD face decisions that are likely to cause decisional conflict. Most studies focused on information needs related to renal replacement therapy and withdrawing or withholding dialysis. There was less focus on other decision-making needs in the context of those choices and across the trajectory of CKD. Although patient decision aids and implementation of shared decision-making have been evaluated in patients with other medical conditions, little is known about interventions to support patients with CKD making quality decisions.

Practice implications

Patients with CKD have decision-making needs across the trajectory of their illness. Although little is known about supporting patients with CKD decision-making, support could be provided with protocols and tools that have been developed for other chronic illness situations. Development of CKD-specific clinical practice guidelines that include decision support best practices could benefit CKD patients. Research priorities include development and evaluation of CKD focused decision support tools and processes.     

Current Directions in Videoconferencing Tele-Mental Health Research

The provision of mental health services via videoconferencing tele-mental health has become an increasingly routine component of mental health service delivery throughout the world. Emphasizing the research literature since 2003, we examine (a) the extent to which the field of tele-mental health has advanced the research agenda previously suggested and (b) implications for tele-mental healthcare delivery for special clinical populations. Previous findings have demonstrated that tele-mental health services are satisfactory to patients, improve outcomes, and are probably cost effective. In the very small number of randomized controlled studies that have been conducted to date, tele-mental health has demonstrated equivalent efficacy compared to face-to-face care in a variety of clinical settings and with specific patient populations. However, methodologically flawed or limited research studies are the norm, and thus the research agenda for tele-mental health has not been fully maximized. Implications for future research and practice are discussed.     

The lure of 'patient choice'.

As primary care practitioners are the health professionals closest to patients' everyday lives, they are most likely to experience the impact of policies that support the patient choice agenda. The government's approach to increasing patient choice has been subject to criticism by those sceptical of its politics and by those concerned with its influence on health providers and some patient groups. A perspective missing from the debate is one informed by research on the psychology of choice. Some psychologists have argued that a seemingly inbuilt preference for choice can adversely affect the decision-making process and that presenting healthcare decisions as choices may result in less reasoned decision making. It is important that GPs encourage patients to make reasoned healthcare decisions that are informed by an evaluation of the options rather than by a simple preference for choice. Patients are likely to be less satisfied with, and experience more regret about, choices made without reasoning.     

Exploring variables related to medical surrogate decision-making accuracy during the COVID-19 pandemic

ObjectiveSurrogate medical decision making is common in the United States healthcare system. Variables that may influence surrogate decision making have been proposed. Little work has examined relations between these variables and outcomes of surrogate decision making. This study investigated whether surrogates’ characteristics, including their knowledge of treatment options, and interpersonal factors predicted surrogates’ accuracy and intervention selections. Specifically, predictor variables included: trust in the medical profession, trait-level anxiety, depression, anxiety about COVID-19, religiosity, perceived emotional support, understanding of treatment options, empathy, willingness to accept responsibility for medical decisions, reluctance to burden others, and perceived similarity between oneself and the patient.Methods154 pairs of patients and their surrogates completed an online survey. Patients indicated preferred treatments in hypothetical decision scenarios. Surrogates indicated the treatment that they thought the patient would prefer.ResultsWhen taken all together in a predictive model, the variables significantly predicted surrogates? accuracy, F (6) = 3.03, R² = .12, p = .008. Variables also predicted selection of intensive interventions, F (4) = 5.95, R² = .14, p = .00. Surrogates reporting greater anxiety about COVID-19 selected more intensive interventions.ConclusionsConsistent with prior research, this study found that surrogates’ characteristics influence the interventions they choose, with anxiety about COVID-19 having considerable bearing on their chosen interventions.Practice implicationsThese findings can inform development of decision-making interventions to improve surrogates’ accuracy. Providers may attend to variables highlighted by this study to support surrogates, particularly within the stressful context of COVID-19 and possible future pandemics.     

Examining Psychotherapy Processes in a Services Research Context

Interdisciplinary research efforts integrating services and interventions research methodologies are needed to improve the "real-world" clinical utility and impact of youth mental health research. "Hybrid" services and interventions research efforts can capitalize on the methodologic strengths of each research tradition in order to more rigorously examine and affect therapy processes in usual care youth mental health service settings. The goals of this article are to (a) identify the need for hybrid practice research on youth mental health care; (b) present a "case example" of a hybrid study, where child and family therapy processes are being examined in a usual care, practice-based context by a team of services researchers; (c) address the potential advantages and challenges of hybrid research; and (d) suggest promising areas for future hybrid research in youth mental health care.     

Shared decision making and other variables as correlates of satisfaction with health care decisions in a United States national survey

Objective

The purpose of this study was to examine the relationship between shared decision-making (SDM) and satisfaction with decision (SWD) within a larger survey of patient decision-making in health care consultations.

Methods

A randomly selected age-proportionate national sample of adults (aged 21–70 years) stratified on race, ethnicity, and gender (N = 488) was recruited from a health research volunteer registry and completed an online survey with reference to a recent health consultation. Measures included the Shared Decision Making-9 questionnaire (SDM-Q-9), Satisfaction With Decision (SWD) scale, sociodemographic, health, and other standardized decision-making measures. Forward selection weighted multiple regression analysis was used to model correlates of SWD.

Results

After controlling for sociodemographic variables, SDM-Q-9 total score was associated with SWD, adjusted R² = .368, p < .001. Three of nine SDM-Q-9 items accounted for significant proportions of variance in SWD.

Conclusion

SDM was positively associated with SWD and was strongest for three areas of SDM: patients being helped in a health care consultation with understanding information, with treatment preference elicitation, and with weighing options thoroughly.

Practice implications

By identifying variables such as SDM that are associated with SWD, health care interventions can better target modifiable factors to enhance satisfaction and other outcomes.     

Patient-centered interventions to improve medication management and adherence: A qualitative review of research findings

Objective

Patient-centered approaches to improving medication adherence hold promise, but evidence of their effectiveness is unclear. This review reports the current state of scientific research around interventions to improve medication management through four patient-centered domains: shared decision-making, methods to enhance effective prescribing, systems for eliciting and acting on patient feedback about medication use and treatment goals, and medication-taking behavior.

Methods

We reviewed literature on interventions that fell into these domains and were published between January 2007 and May 2013. Two reviewers abstracted information and categorized studies by intervention type.

Results

We identified 60 studies, of which 40% focused on patient education. Other intervention types included augmented pharmacy services, decision aids, shared decision-making, and clinical review of patient adherence. Medication adherence was an outcome in most (70%) of the studies, although 50% also examined patient-centered outcomes.

Conclusions

We identified a large number of medication management interventions that incorporated patient-centered care and improved patient outcomes. We were unable to determine whether these interventions are more effective than traditional medication adherence interventions.

Practice Implications

Additional research is needed to identify effective and feasible approaches to incorporate patient-centeredness into the medication management processes of the current health care system, if appropriate.     

Decision making and coping in healthcare: the Coping in Deliberation (CODE) framework

Objective

To develop a framework of decision making and coping in healthcare that describes the twin processes of appraisal and coping faced by patients making preference-sensitive healthcare decisions.

Methods

We briefly review the literature for decision making theories and coping theories applicable to preference-sensitive decisions in healthcare settings. We describe first decision making, then coping and finally attempt to integrate these processes by building on current theory.

Results

Deliberation in healthcare may be described as a six step process, comprised of the presentation of a health threat, choice, options, preference construction, the decision itself and consolidation post-decision. Coping can be depicted in three stages, beginning with a threat, followed by primary and secondary appraisal and ultimately resulting in a coping effort.

Conclusions

Drawing together concepts from prominent decision making theories and coping theories, we propose a multidimensional, interactive framework which integrates both processes and describes coping in deliberation.

Practice implications

The proposed framework offers an insight into the complexity of decision making in preference-sensitive healthcare contexts from a patient perspective and may act as theoretical basis for decision support.     

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.     

Measuring critical deficits in shared decision making before elective surgery

Objective

Identifying patient factors correlated with specific needs in preoperative decision making is of clinical and ethical importance. We examined patterns and predictors of deficiencies in informed surgical consent and shared decision-making in preoperative patients.

Methods

Validated measures were used to survey 1034 preoperative patients in the preoperative clinic after signed informed consent. Principal component analysis defined correlated groupings of factors. Multivariable analysis assessed patient factors associated with resultant groupings.

Results

13% of patients exhibited deficits in their informed consent process; 33% exhibited other types of deficits. Informed consent deficits included not knowing the procedure being performed or risks and benefits. Other deficits included not having addressed patient values, preferences and goals. Non-English language and lower educational level were factors correlated with higher risk for deficits.

Conclusion

Deficits exist in over a third of patients undergoing preoperative decision-making. Sociodemographic factors such as language and educational level identified particularly vulnerable groups at risk for having an incomplete, and possibly ineffective, decision-making process.

Practice implications

Interventions to identify vulnerable groups and address patient centered surgical decision making in the pre-operative setting are needed. Focused interventions to address the needs of at-risk patients have potential to improve the surgical decision-making process and reduce disparities.     

Treatment decision making involving patients with dementia in acute care: A scoping review

Objective

To summarize the evidence regarding the factors and processes of treatment decision making involving a person with dementia (PWD) in the acute care setting.

Effectiveness of a short course in clinical communication skills for hospital doctors: results of a crossover randomized controlled trial (ISRCTN22153332)

Objective

Assistance for patients faced with medical decisions has largely focussed on the clarification of information and personal values. Our aim is to draw on the decision research describing the role of emotion in combination with health behaviour models to provide a framework for conceptualizing patient decisions.

Methods

A review of the psychological and medical decision making literature concerned with the role of emotion/affect in decision making and health behaviours.

Results

Emotion plays an influential role in decision making. Both current and anticipated emotions play a motivational role in choice. Amalgamating these findings with that of Leventhal's (1970) SRM provide a framework for thinking about the influence of emotion on a patient medical decision.

Conclusion

Our framework suggests that a patient must cope with four sets of elements. The first two relate to the need to manage the cognitive and emotional aspects of the health threat. The second set relate to the management of the cognitive and emotional elements of the decision, itself.

Practice implications

The framework provides a way for practitioners and researchers to frame thinking about a patient medical decision in order to assist the patient in clarifying decisional priorities.     

A Web-Based Tool to Support Shared Decision Making for People With a Psychotic Disorder: Randomized Controlled Trial and Process Evaluation

Background

Mental health policy makers encourage the development of electronic decision aids to increase patient participation in medical decision making. Evidence is needed to determine whether these decision aids are helpful in clinical practice and whether they lead to increased patient involvement and better outcomes.

Objective

This study reports the outcome of a randomized controlled trial and process evaluation of a Web-based intervention to facilitate shared decision making for people with psychotic disorders.

Methods

The study was carried out in a Dutch mental health institution. Patients were recruited from 2 outpatient teams for patients with psychosis (N=250). Patients in the intervention condition (n=124) were provided an account to access a Web-based information and decision tool aimed to support patients in acquiring an overview of their needs and appropriate treatment options provided by their mental health care organization. Patients were given the opportunity to use the Web-based tool either on their own (at their home computer or at a computer of the service) or with the support of an assistant. Patients in the control group received care as usual (n=126). Half of the patients in the sample were patients experiencing a first episode of psychosis; the other half were patients with a chronic psychosis. Primary outcome was patient-perceived involvement in medical decision making, measured with the Combined Outcome Measure for Risk Communication and Treatment Decision-making Effectiveness (COMRADE). Process evaluation consisted of questionnaire-based surveys, open interviews, and researcher observation.

Results

In all, 73 patients completed the follow-up measurement and were included in the final analysis (response rate 29.2%). More than one-third (48/124, 38.7%) of the patients who were provided access to the Web-based decision aid used it, and most used its full functionality. No differences were found between the intervention and control conditions on perceived involvement in medical decision making (COMRADE satisfaction with communication: F_1,68=0.422, P=.52; COMRADE confidence in decision: F_1,67=0.086, P=.77). In addition, results of the process evaluation suggest that the intervention did not optimally fit in with routine practice of the participating teams.

Conclusions

The development of electronic decision aids to facilitate shared medical decision making is encouraged and many people with a psychotic disorder can work with them. This holds for both first-episode patients and long-term care patients, although the latter group might need more assistance. However, results of this paper could not support the assumption that the use of electronic decision aids increases patient involvement in medical decision making. This may be because of weak implementation of the study protocol and a low response rate.

Trial Registration

Dutch Trial Register (NTR) trial number: 10340; http://www.trialregister.nl/trialreg/admin/rctsearch.asp?Term=10340 (Archived by WebCite at http://www.webcitation.org/6Jj5umAeS).     

Combining deliberation and intuition in patient decision support

Objective

To review the strengths and weaknesses of deliberative and intuitive processes in the context of patient decision support and to discuss implications for decision aid (DA) design.

Methods

Conceptual review of the strengths and weaknesses of intuitive and analytical decision making and applying these findings to the practice of DA design.

Results

DAs combine several important goals: providing information, helping to clarify treatment related values, supporting preference construction processes, and facilitating more active engagement in decision making. Many DAs encourage patients to approach a decision analytically, without solid theoretical or empirical grounding for this approach. Existing research in other domains suggests that both intuition and deliberation may support decision making. We discuss implications for patient decision support and challenge researchers to determine when combining these processes leads to better outcomes.

Conclusions

Intuitive and analytical decision processes may have complementary effects in achieving the desired outcomes of patient decision support.

Practice implications

DA developers should be aware that tools solely targeted at supporting deliberation may limit DA effectiveness and harm preference construction processes. Patients may be better served by combined strategies that draw on the strengths and minimize the weaknesses of both deliberative and intuitive processes.     

Shared decision-making about colorectal cancer screening: A conceptual framework to guide research

Objective

To develop a conceptual framework to guide research on shared decision-making about colorectal cancer (CRC) screening among persons at average risk and their providers.

Methods

Based upon a comprehensive review of empirical literature and relevant theories, a conceptual framework was developed that incorporated patient characteristics, cultural beliefs, provider/health care system variables, health belief/knowledge/stage of adoption variables, and shared decision-making between patients and providers that may predict behavior. Relationships among concepts in the framework, shared decision-making process and outcomes, and CRC screening behavior were proposed. Directions for future research were presented.

Results

Many of the concepts in the proposed framework have been examined in prior research. However, these elements have not been combined previously to explain shared decision-making about CRC screening.

Conclusion

Research is needed to test the proposed relationships and hypotheses and to refine the framework.

Practice Implications

Findings from future research guided by the proposed framework may inform clinical practice to facilitate shared decision-making about CRC screening.     

A patient in the clinic; a person in the world. Why shared decision making needs to center on the person rather than the medical encounter

Interest in shared decision making (SDM) has increased and become widely promoted. However, from both practical and measurement perspectives, SDM’s origin as an outgrowth of patient autonomy has resulted in narrowly conceptualizing and operationalizing decision making. The narrow focus on individual patient autonomy fails in four main ways: 1) excluding several facets of the roles, actions, and influences of decision partners in decision making; 2) focusing solely on the medical encounter; 3) ignoring the informational environment to which patients have access; and 4) treating each encounter as independent of all others. In addition to creating a research agenda that could answer important outstanding questions about how decisions are made and the consequences thereof, reconceiving SDM as centered on the person rather than the medical encounter has the potential to transform how illness is experienced by patients and families and how clinicians find meaning in their work.