Decision Aid for Nutrition Support in Pediatric Oncology: A Pilot Study

Background: Despite the importance of nutrition support in preventing malnutrition in pediatric oncology, the decision to initiate and choose which nutrition support method is most appropriate can be difficult for parents and healthcare professionals. Decision aids are decision‐focused patient information materials. They can improve knowledge, reduce decisional conflict, improve patients’ risk perception, and increase patient participation in the decision‐making process. They have never been evaluated for pediatric oncology nutrition decisions. We aimed to develop and pilot test a decision aid to assist parents making these decisions in collaboration with their healthcare team. Materials and Methods: The decision aid was developed in accordance with the International Patient Decision Aid Standards guidelines and evaluated in a single‐center pilot study. The parents and healthcare professionals of pediatric oncology patients were eligible. Participants read the decision aid and completed a questionnaire assessing acceptability, usability, and improvement in understanding. Results: Thirty‐one parents and 15 healthcare professionals participated. Parents found the decision aid balanced, relevant, and satisfactory overall. Some parents reported the decision aid was too long (26%). Healthcare professionals positively rated the development process, usefulness to parents, and content and format of the decision aid. Forty‐three percent reported that using the decision aid would save them time. There were no significant associations between health literacy, decisional satisfaction, decisional regret, acceptability, and improvement in understanding. Conclusion: The decision aid appears acceptable and usable for our target population. Decision aid feedback provided critical data to make modifications before evaluating the decision aid in a randomized controlled trial.     

Shared decision making or paternalism in nursing consultations? A qualitative study of primary care asthma nurses’ views on sharing decisions with patients regarding inhaler device selection

Background Although patients with asthma would like more involvement in the decision‐making process, and UK government policy concerning chronic conditions supports shared decision making, it is not widely used in practice. Objective To investigate how nurses approach decision making in relation to inhaler choice and long‐term inhaler use within a routine asthma consultation and to better understand the barriers and facilitators to shared decision making in practice. Setting and participants Semi‐structured interviews were conducted with post‐registration, qualified nurses who routinely undertook asthma consultations and were registered on a respiratory course. Interviews were recorded, transcribed and analysed using the Framework approach. Results Twenty participants were interviewed. Despite holding positive views about shared decision making, limited shared decision making was reported. Opportunities for patients to share decisions were only offered in relation to inhaler device, which were based on the nurse’s pre‐selected recommendations. Giving patients this ‘choice’ was seen as key to improving adherence. Discussion There is a discrepancy between nurses’ understanding of shared decision making and the depictions of shared decision making presented in the academic literature and NHS policy. In this study, shared decision making was used as a tool to support the nurses’ agenda, rather than as a natural expression of equality between the nurse and patient. Conclusion There is a misalignment between the goals of practice nurses and the rhetoric regarding patient empowerment. Shared decision making may therefore only be embraced if it improves patient outcomes. This study indicates attitudinal shifts and improvements in knowledge of ‘shared decision‐making’ are needed if policy dictates are to be realised.     

Decision making about pre-medication to children

Background Inviting the child to participate in medical decisions regarding common medical procedures might influence the child's behaviour during the procedures. We wanted to study nurse decision‐making communication regarding pre‐medication before ear, nose and throat (ENT) surgery. Method In total, 102 children (3–6 years) signed for ENT surgery were video‐filmed during the pre‐medication process. The nurse decision‐making communication was identified, transcribed and grouped in six main categories dependent on the level of participation (self‐determination, compromise, negotiation, questioning, information, lack of communication). Associations between child factors (age, gender, verbal communication and non‐verbal communication) and different nurse decision‐making communication were studied. Associations between the decision‐making communication and verbal hesitation and/or the child's compliance in taking pre‐medication were also studied. Results Totally, information was the most frequently used category of decision making communication followed by negotiation and questioning. To the children showing signs of shyness, the nurse used more negotiation, questions and self‐determination communication and less information. The nurse used more compromise, negotiation and gave less information to children with less compliance. No specific type of nurse decision‐making communication was associated with verbal hesitation. The most important predictors for verbal hesitation were none or hesitant eye contact with nurse (OR = 4.5) and placement nearby or in parent's lap (OR = 4.7). Predictors for less compliance in taking pre‐medication were verbal hesitation from the child (OR = 22.7) and children who did not give any verbal answer to nurse initial questions (OR = 5.5). Conclusion Decision‐making communication could not predict the child's compliance during pre‐medication. Although negotiation, questioning and self‐determination communication were associated with more unwillingness to take pre‐medication. More knowledge is needed about communication to children in medical settings and how it influences the child's behaviours.     

‘They’re doing surgery on two people’: a meta‐ethnography of the influences on couples’ treatment decision making for prostate cancer

Background Current orthodoxy suggests that patients need to be provided with full information about their care and that treatment options should be discussed with patients and family members. This imperative is especially challenging when there is a lack of consensus about treatment effectiveness and equivocacy over different types of interventions. In the case of prostate cancer, evidence is contested as to the efficacy of different treatments. Thus, involving patients and their family members in treatment choices is complex and little is known about how patients and their partners process these decisions when there is uncertainty about different outcomes. This paper has reviewed the literature on the way couples approach such decision making in relation to treatment for prostate cancer. Objective A meta‐ethnographic synthesis of published qualitative papers that focused on the influences on patients’, and their partners’ treatment decision making for prostate cancer, was conducted in order to identify and understand barriers and facilitators which impact on this process. Results Our synthesis indicates that the couples’ relationship ‘dynamic’ provides a contextual background against which treatment decisions are negotiated and made. Discussion and conclusions We propose that the findings from this synthesis can enhance the potential for shared decision making for patients, and their partners, when facing a treatment decision for prostate cancer. By understanding the couples’ relationship dynamic pre‐diagnosis, clinicians may be able to tailor the communication and information provision to both patients and their partners, providing a personalized approach to treatment decision making.     

Inside the black box of shared decision making: distinguishing between the process of involvement and who makes the decision

BACKGROUND: Shared decision making has practical implications for everyday health care. However, it stems from largely theoretical frameworks and is not widely implemented in routine practice. AIMS: We undertook an empirical study to inform understanding of shared decision making and how it can be operationalized more widely. METHOD: The study involved patients visiting UK general practitioners already well experienced in shared decision making. After these consultations, semi-structured telephone interviews were conducted and analysed using the constant comparative method of content analysis. RESULTS: All patients described at least some components of shared decision making but half appeared to perceive the decision as shared and half as 'patient-led'. However, patients exhibited some uncertainty about who had made the decision, reflecting different meanings of decision making from those described in the literature. A distinction is indicated between the process of involvement (option portrayal, exchange of information and exploring preferences for who makes the decision) and the actual decisional responsibility (who makes the decision). The process of involvement appeared to deliver benefits for patients, not the action of making the decision. Preferences for decisional responsibility varied during some consultations, generating unsatisfactory interactions when actual decisional responsibility did not align with patient preferences at that stage of a consultation. However, when conducted well, shared decision making enhanced reported satisfaction, understanding and confidence in the decisions. CONCLUSIONS: Practitioners can focus more on the process of involving patients in decision making rather than attaching importance to who actually makes the decision. They also need to be aware of the potential for changing patient preferences for decisional responsibility during a consultation and address non-alignment of patient preferences with the actual model of decision making if this occurs.     

On the suitability of fast and frugal heuristics for designing values clarification methods in patient decision aids: a critical analysis

Background Increasingly, patient decision aids and values clarification methods (VCMs) are being developed to support patients in making preference‐sensitive health‐care decisions. Many VCMs encourage extensive deliberation about options, without solid theoretical or empirical evidence showing that deliberation is advantageous. Research suggests that simple, fast and frugal heuristic decision strategies sometimes result in better judgments and decisions. Durand et al. have developed two fast and frugal heuristic‐based VCMs. Objective To critically analyse the suitability of the ‘take the best’ (TTB) and ‘tallying’ fast and frugal heuristics in the context of patient decision making. Strategy Analysis of the structural similarities between the environments in which the TTB and tallying heuristics have been proven successful and the context of patient decision making and of the potential of these heuristic decision processes to support patient decision making. Conclusion The specific nature of patient preference‐sensitive decision making does not seem to resemble environments in which the TTB and tallying heuristics have proven successful. Encouraging patients to consider less rather than more relevant information potentially even deteriorates their values clarification process. Values clarification methods promoting the use of more intuitive decision strategies may sometimes be more effective. Nevertheless, we strongly recommend further theoretical thinking about the expected value of such heuristics and of other more intuitive decision strategies in this context, as well as empirical assessments of the mechanisms by which inducing such decision strategies may impact the quality and outcome of values clarification.     

Communicating uncertainty can lead to less decision satisfaction: a necessary cost of involving patients in shared decision making?

Background Given the large number of interventions of uncertain effectiveness, research on communicating uncertainty is needed to examine its impact on patients’ health decisions. Objective To examine physicians’ communication of uncertainty and its impact on patients’ decisions and decision satisfaction. Design, setting, and participants Participants included female patients seen in a breast health centre whose physicians were discussing a decision with them, with no clear ‘best’ choice based on outcome evidence. Main variables Decision communication was measured using the OPTION scale, a measure of the degree to which physicians involve patients in a decision‐making process. One‐to‐two weeks after the discussion, patients reported their satisfaction with the decision‐making process and their decision. Decisions were verified in medical charts with patient consent. Results Seventy‐five women agreed to participate (94% response rate). The mean translated score of the OPTION scale was 68.0 (SD 18.3), but only 33.2 (SD 19.1) for the uncertainty items. Among cancer patients, communicating uncertainty was negatively related to decision satisfaction (P < 0.002), and there was an interaction between patient involvement in decisions and communicating uncertainty in relation to patients’ decision satisfaction (P < 0.03). Discussion Communicating scientific uncertainty might lead to less decision satisfaction among women facing cancer treatment decisions; this could be a natural outcome of the decision making process. Involving patients in decisions might help them tolerate uncertainty. Conclusion Future studies should consider assessing other outcomes (e.g. knowledge, physician support) of the decision making process. There may be trade‐offs between acknowledging uncertainty and immediate decision satisfaction.     

A survey of the decision-making needs of Canadians faced with complex health decisions

Objective To describe the decision‐making needs of Canadians when faced with ‘complex’ health decisions characterized by balancing advantages against disadvantages. Although a national report emphasized that public confidence in the health‐care system depends on support for personal knowledge and decision‐making, there has been no systematic investigation of the Canadian population's decision‐making needs. Design Cross‐sectional telephone survey using random digit dialling. Participants National sample of 635 adults over 18 years of age, living in Canada. Results Forty‐two percentage of eligible contacts participated. Sixty‐five percent of contacts reported making ‘complex’ health decisions, commonly about medical or surgical treatments or birth control, and more commonly by women and by married/separated individuals. Most respondents took an active role in their decisions, often sharing the process with their partner or family. Being younger was associated with a more independent role. Physicians were more often involved in the decisions of respondents with less education. Fifty‐nine percent of respondents experienced decisional conflict; more conflict was seen with those who were female and feeling uninformed about options, pressured to select one particular option, and unready or unskilled in decision‐making. Less decisional conflict was seen in those who reported birth control decisions and in those who were 70 years and older. Participants used several strategies when deliberating about choices including: information gathering, clarifying their values, and seeking support and information from others. Personal counselling and printed information materials were commonly preferred methods of learning about options. ‘Essential’ criteria for judging satisfactory decision‐making included: having sufficient knowledge about the options, outcomes, and probabilities; being clear about values; selecting and implementing a choice that agrees with personal values; and expressing satisfaction with the choice. Conclusions Canadians, particularly women, face difficult decisions and need support and information from credible sources.     

Design and usability of heuristic‐based deliberation tools for women facing amniocentesis

Background Evidence suggests that in decision contexts characterized by uncertainty and time constraints (e.g. health‐care decisions), fast and frugal decision‐making strategies (heuristics) may perform better than complex rules of reasoning. Objective To examine whether it is possible to design deliberation components in decision support interventions using simple models (fast and frugal heuristics). Design The ‘Take The Best’ heuristic (i.e. selection of a ‘most important reason’) and ‘The Tallying’ integration algorithm (i.e. unitary weighing of pros and cons) were used to develop two deliberation components embedded in a Web‐based decision support intervention for women facing amniocentesis testing. Ten researchers (recruited from 15), nine health‐care providers (recruited from 28) and ten pregnant women (recruited from 14) who had recently been offered amniocentesis testing appraised evolving versions of ‘your most important reason’ (Take The Best) and ‘weighing it up’ (Tallying). Results Most researchers found the tools useful in facilitating decision making although emphasized the need for simple instructions and clear layouts. Health‐care providers however expressed concerns regarding the usability and clarity of the tools. By contrast, 7 out of 10 pregnant women found the tools useful in weighing up the pros and cons of each option, helpful in structuring and clarifying their thoughts and visualizing their decision efforts. Several pregnant women felt that ‘weighing it up’ and ‘your most important reason’ were not appropriate when facing such a difficult and emotional decision. Conclusion Theoretical approaches based on fast and frugal heuristics can be used to develop deliberation tools that provide helpful support to patients facing real‐world decisions about amniocentesis.     

Reconciling the theory and reality of shared decision‐making: A “matching” approach to practitioner leadership

Shared decision making (SDM) evolved to resolve tension between patients’ entitlement to make health‐care decisions and practitioners’ responsibility to protect patients’ interests. Implicitly assuming that patients are willing and able to make “good” decisions, SDM proponents suggest that patients and practitioners negotiate decisions. In practice, patients often do not wish to participate in decisions, or cannot make good decisions. Consequently, practitioners sometimes lead decision making, but doing so risks the paternalism that SDM is intended to avoid. We argue that practitioners should take leadership when patients cannot make good decisions, but practitioners will need to know: (a) when good decisions are not being made; and (b) how to intervene appropriately and proportionately when patients cannot make good decisions. Regarding (a), patients rarely make decisions using formal decision logic, but rely on informal propositions about risks and benefits. As propositions are idiographic and their meanings context‐dependent, normative standards of decision quality cannot be imposed. Practitioners must assess decision quality by making subjective and contextualized judgements as to the “reasonableness” of the underlying propositions. Regarding (b), matched to judgements of reasonableness, we describe levels of leadership distinguished according to how directively practitioners act; ranging from prompting patients to question unreasonable propositions or consider new propositions, to directive leadership whereby practitioners recommend options or deny requested procedures. In the context of ideas of relational autonomy, the objective of practitioner leadership is to protect patients’ autonomy by supporting good decision making, taking leadership in patients’ interests only when patients are unwilling or unable to make good decisions.     

Value Assessment at the Point of Care: Incorporating Patient Values throughout Care Delivery and a Draft Taxonomy of Patient Values

Incorporation of patient values is a key element of patient-centered care, but consistent incorporation of patient values at the point of care is lacking. Shared decision making encourages incorporation of patient values in decision making, but associated tools often lack guidance on value assessment. In addition, focusing on patient values relating only to specific decisions misses an opportunity for a more holistic approach to value assessment that could impact other aspects of clinical encounters, including health care planning, communication, and stakeholder involvement. In this commentary, we propose a taxonomy of values underlying patient decision making and provide examples of how these impact provision of health care. The taxonomy describes four categories of patient values: global, decisional, situational, and external. Global values are personal values impacting decision making at a universal level and can include value traits and life priorities. Decisional values are the values traditionally conceptualized in decision making, including considerations such as efficacy, toxicity, quality of life, convenience, and cost. Situational values are values tied to a specific moment in time that modify patients’ existing global and decisional values. Finally, discussion of external values acknowledges that many patients consider values other than their own when making decisions. Recognizing the breadth of values impacting patient decision making has implications for both overall health care delivery and shared decision making because value assessments focusing only on decisional values may miss important patient considerations. This draft taxonomy highlights different values impacting decision making and facilitates a more complete value assessment at the point of care.     

Clinical decision‐making in the context of chronic illness

This paper develops a framework to compare clinical decision making in relation to chronic and acute medical conditions. Much of the literature on patient‐physician decision making has focused on acute and often life‐threatening medical situations in which the patient is highly dependent upon the expertise of the physician in providing the therapeutic options. Decision making is often constrained and driven by the overwhelming impact of the acute medical problem on all aspects of the individual’s life. With chronic conditions, patients are increasingly knowledgeable, not only about their medical conditions, but also about traditional, complementary, and alternative therapeutic options. They must make multiple and repetitive decisions, with variable outcomes, about how they will live with their chronic condition. Consequently, they often know more than attending treatment personnel about their own situations, including symptoms, responses to previous treatment, and lifestyle preferences. This paper compares the nature of the illness, the characteristics of the decisions themselves, the role of the patient, the decision‐making relationship, and the decision‐making environment in acute and chronic illnesses. The author argues for a different understanding of the decision‐making relationships and processes characteristic in chronic conditions that take into account the role of trade‐offs between medical regimens and lifestyle choices in shaping both the process and outcomes of clinical decision‐making. The paper addresses the concerns of a range of professional providers and consumers.     

Involving patients in decisions regarding preventive health interventions using the analytic hierarchy process

Practice guidelines that recommend active patient involvement in decisions about preventive health interventions are becoming increasingly common. These decisions frequently involve difficult trade‐offs between competing risks and benefits that require easily accessible information about the expected outcomes, superb doctor–patient communication, and effective integration of objective outcome data with individual values and preferences. Successful implementation of recommendations for shared decision‐making in preventive health care will require the development of efficient methods for making these complex decisions in busy practice settings. This article describes how the analytic hierarchy process, a multiple criteria decision‐making method, could facilitate successful implementation of shared decision‐making regarding preventive health care in clinical practice. The method is illustrated using recent guidelines for colorectal cancer screening for average risk patients issued by the American Gastroenterological Association.     

Shared decision making in clinical medicine: past research and future directions

CONTENT: Shared medical decision making is a process by which patients and providers consider outcome probabilities and patient preferences and reach a health care decision based on mutual agreement. Shared decision making is best used for problems involving medical uncertainty. During the process the provider-patient dyad considers treatment options and consequences and explores the fit of expected benefits and consequences of treatment with patient preferences for various outcomes. This paper reviews the literature on shared medical decision making. Several questions are considered. Although several studies suggest that patients do not want to be involved in decision making, these studies typically fail to separate decisions about technical aspects of treatment from preferences for outcomes. There is considerable evidence that patients want to be consulted about the impact of treatment. Studies on the acceptability of shared decision making for physicians have produced inconsistent results. Shared decision making is more acceptable to younger and better-educated patients. It remains unclear whether shared decision making requires expensive video presentations or whether the same results can be obtained with simpler methods, such as the decision board. We conclude that shared medical decision making is an important development in health care. More research is necessary to identify the effects of shared decision making on patient satisfaction and health outcomes. Further, more research is necessary in order to evaluate the most effective methods for engaging patients in decisions about their own health care.     

Making choices about medical interventions: the experience of disabled young people with degenerative conditions

Background Current western policy, including the UK, advocates choice for service users and their families, taking greater control and being more involved in decision making. However, children’s role in health decision making, especially from their own perspective, has received less research attention compared to doctors and parents’ perspectives. Objective To explore the perspective and experiences of disabled young people with degenerative conditions as they face significant medical interventions and engage in decision‐making processes. Design and methods Findings from a longitudinal qualitative study of 10 young people (13–22 years) with degenerative conditions are reported. Individual semi‐structured interviews were conducted with participants over 3 years (2007–2010); the paper reports data from all three interview rounds. Interviews focused on medical intervention choices the young people identified as significant. Results Although the young people in this study felt involved in the medical intervention choices discussed, findings demonstrate a complex and diverse picture of decision making. Results highlighted different decisional roles adopted by the young people, the importance of information heuristics and working with other people whilst engaging in complex processes weighing up different decisional factors. Discussion Young people’s experiences demonstrate the importance of moving beyond viewing health choices as technical or rational decisions. How each young person framed their decision was important. Recognizing this diversity and the importance of emerging themes, such as living a normal life, independence, fear of decisions viewed as ‘irreversible’ and the role of parents and peers in decision making highlights that, there are clear practice implications including, active practitioner listening, sensitivity and continued holistic family working.     

Contemporary Health-Related Decision Aids: Tools for Social Work Practice

The escalating complexity in health-related decisions that people face have important implications for social work interventions. This article explores the nature of these implications within the context of decisional conflict, shared decision making, and the use of decision aids. In addition, the authors present the findings of a content analysis of 29 contemporary health-related decision aids. Emergent categories from this analysis are presented as a resource for social workers as they encounter, adapt, and create decision aids in their work to help address the health-related needs of their clients.     

Development and evaluation of a decision aid for patients with stage IV non‐small cell lung cancer

Although guidelines for treating stage IV non‐small cell lung cancer suggest that the patient’s values should be considered in decision‐making, there are no practical tools available to assist them with their decision‐making.

Objective

To develop and evaluate a decision aid that incorporates patient values.

Design and sample

(1) Before/after evaluation with patients referred to a regional cancer centre. (2) Mailed survey of thoracic surgeons and respirologists in Ontario.

Intervention

An audio‐tape guided individuals to review a booklet describing stage IV non‐small cell lung cancer, its impact and possible coping strategies, treatment options, benefits and risks, and examples of the decision‐making of others. Patients then used a worksheet to consider and communicate personal issues involved in the choice, including: personal values using a ‘weigh‐scale’; questions; preferred role in decision‐making; and predisposition.

Measures

(1) Patient questionnaires eliciting knowledge, the decision, decisional conflict and acceptability of the decision aid. (2) Physician questionnaires eliciting attitudes toward the decision aid.

Results

(1) Twenty of 30 patients used the aid in decision‐making. Users thought that the aid was acceptable and significantly improved their knowledge about options and outcomes (P < 0.001), and reduced their decisional conflict (P < 0.001). (2) The majority of the 29 physicians who reviewed the decision aid found it acceptable, were comfortable providing it to patients and said that they were likely to use it.

Conclusion

The decision aid is a useful and acceptable adjunct to personal counselling.

     

Preliminary validation of the Satisfaction With Decision scale with depressed primary care patients

Objective To conduct a preliminary validation of the Satisfaction With Decision (SWD) scale with depressed primary care patients. Design Cross‐sectional observational pilot study using a postal survey. Setting and participants Depressed primary care patients (n = 97) who recently had made a new decision about antidepressant medication use completed surveys regarding their treatment decisions. Main variables Measures included patient‐reported satisfaction with decision, decisional conflict, knowledge about depression and treatment, decision involvement, pain and health status, antidepressant medication efficacy, and satisfaction with health services. Results The SWD scale had good internal consistency reliability (α = 0.85). Evidence for construct validity was confirmed via a hypothesized pattern of relationships between the SWD scale and other measures. Decision satisfaction was associated with several issues of relevance for designing patient‐centred decision support interventions: (1) knowledge about depression and treatment; (2) involvement in health‐related decisions; and (3) aiding evaluation of trade‐offs among pros and cons of treatment. Conclusions The results of this pilot study show that the SWD scale appears to be a psychometrically sound and practical measure for research with this population. Additional research is needed on the theoretical nature of decision satisfaction and developing and testing patient‐centred decision support interventions for depression treatment.