Patient Participation In Decision Research Articles

Shared decision making and selfmanagement in multiple sclerosis – a consequence of evidence

Shared decision making is increasingly recognised as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments such as multiple sclerosis (MS). Since 2001, we studied prerequisites for patient participation in decision making as well as the effects of evidence-based patient information on decision making processes in MS. In pre-studies we found that 80% of MS patients demand autonomous roles in treatment decisions which contrasts to a poor knowledge of risks. On the other hand MS patients are not disturbed by evidence-based, balanced complex information. MS patients can understand this kind of information and are able to transfer new abilities to other situations. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis. Currently, we study the effects of a 4 hour education programme on relapse management versus an information leaflet as controls in 150 RR MS patients in a randomised-controlled trial. In a second trial including 280 MS patients we study the effects of an evidence-based decision aid on immunotherapy on decisional role preference and performance in the patient physician encounter. Results at the end of 2006 will show to which extent patient education with a focus on evidence-based patient information influences participation in the decision making process. Assuming that patient education programmes will enhance self-management abilities and the sense of control over the disease with enhanced quality of life and well-being, further modules covering all aspects of MS are to be developed.

Patient participation in decision making: views of health professionals caring for people with colorectal cancer

The aim of this study was to explore views on patient participation in decision making, as described by health professionals caring for people with colorectal cancer. Patient participation in health-care decision making is on the policy agenda at an international level. However, many aspects of cancer care and treatment are complex and it is unclear how health professionals view their role as promoters of patient participation. A qualitative exploratory study. In depth interviews with 35 health professionals in clinical practice. Data were analysed using thematic content analysis, assisted by a computer software package for analysis of qualitative data (N-VIVO). Choices in relation to surgical treatment were viewed as limited. Although it was perceived that patients could be more involved in decisions related to adjuvant treatment, providing information on various chemotherapy regimes was challenging. It was acknowledged that patients could be involved in treatment choices but there was far less clarity concerning aspects of physical and psychological care. Age was a factor when determining which patients should be offered treatment choices. The availability and presentation of choices to patients is context specific and tailored to the preferences of individuals. If health professionals focus only on aspects of decision making related to treatment, the potential for shared partnerships with patients in relation to choices about physical and psychological care may be lost. This may be particularly pertinent for nurses and allied professions who engage with patients throughout the illness trajectory. Policy makers should arguably appreciate that health professionals have an awareness of current thinking on patient participation, but may find policy recommendations challenging to implement in clinical practice when faced with the individual needs and preferences of patients and the complexities and uncertainties of disease management.

What are the Essential Elements to Enable Patient Participation in Medical Decision Making?

BACKGROUNDPatient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire.OBJECTIVETo gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient’s perspective.DESIGNQualitative study.SETTINGIndividual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes.PATIENTSTwenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements.MEASUREMENTSRespondents’ experiences and beliefs related to patient participation in SDM.RESULTSFive elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient’s responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time.LIMITATIONSThe generalizability of the results is limited by the homogeneity of the study sample.CONCLUSIONSOur findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and “buy in” to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.

The impact of patient participation on adherence and clinical outcome in primary care of depression

Objective Patient participation in shared treatment decision-making is hypothesized to improve depression treatment adherence and clinical outcomes in depressed patients. The study aim was to evaluate the impact of patient participation on these factors and to determine the variance of clinical outcome as the primary outcome variable. Methods A survey was administered to 30 general practitioners and 207 depressed patients, at initial consultation and 6–8 weeks later. General practitioners documented their clinical practice and patients completed questionnaires including Brief-PHQ for depression and clinical outcome, patient participation scale, and visual analogue scales for treatment adherence. Assessment of correlations was followed by the development of a structural equation model (as a latent variable analysis) to define a model to explain the entire set of the variables’ relationships. Results Sixty percent of the variance in clinical outcome was attributable to patient adherence ( β = 0.41) and baseline depression severity ( β = 0.65). Depression severity predicted clinical outcome but not patient participation. Participation predicted adherence ( β = 0.39) but did not directly affect clinical outcome. Adherence was explainable by physician- ( β = 0.57) and patient-reported treatment adherence ( β = 0.66). Conclusion In a specific pathway via adherence, patient participation in decision-making influences clinical outcome in primary care of depression. Practice implications The research findings reveal the significance of patient participation as a key factor to address for improving treatment adherence and clinical outcome. Quality improvement strategies for depression treatment should emphasize patient participation.

How general practice can help improve care of people with neurological conditions: a qualitative study

The aim of this qualitative study was to examine the experiences and needs of patients and carers affected by one of three common neurological conditions and to explore how primary care can contribute to improvements in care. Data was drawn from five focus groups recruited from various geographical locations in the north of England served by seven primary care trusts and four neurological departments. Researchers in a semi-rural practice recruited 38 participants, 15 of whom were male and 23 were female. Ages ranged from 26 to 74 years. The participants were either patients or carers of people with epilepsy, multiple sclerosis or Parkinson’s disease and were recruited from three settings: primary care (two groups), voluntary groups (two groups) and secondary care (one group). The results showed that neurological care could be patchy, overstretched and insensitive to the individual patients’ needs. Communication between patient and health professional, and between different sectors of the health service is poor and often leads to time wasting and delays in treatment. The impact of these conditions on the patient and their family and their preferences for treatment varies. Specialist nurses are highly valued by patients and their families but the service is overstretched and access is difficult. General practitioners (GPs) are valued for their communication skills and their ability to act as advocate for the patient; however, there are doubts about their knowledge of neurological conditions. Problems of service access were identified. The skills of health professionals in general practice can be used to complement those in secondary care. GPs and nurses are considered a valuable resource that could be used better to improve neurological care, particularly in fostering patient participation in decisions about their care. Practice-based commissioning offers an opportunity to review services to make better use of the time and skills of all professionals involved in the provision of care.

Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals' perceptions.

BackgroundShared decision-making is advocated because of its potential to improve the quality of the decision-making process for patients and ultimately, patient outcomes. However, current evidence suggests that shared decision-making has not yet been widely adopted by health professionals. Therefore, a systematic review was performed on the barriers and facilitators to implementing shared decision-making in clinical practice as perceived by health professionals.MethodsCovering the period from 1990 to March 2006, PubMed, Embase, CINHAL, PsycINFO, and Dissertation s were searched for studies in English or French. The references from included studies also were consulted. Studies were included if they reported on health professionals' perceived barriers and facilitators to implementing shared decision-making in their practices. Shared decision-making was defined as a joint process of decision making between health professionals and patients, or as decision support interventions including decision aids, or as the active participation of patients in decision making. No study design was excluded. Quality of the studies included was assessed independently by two of the authors. Using a pre-established taxonomy of barriers and facilitators to implementing clinical practice guidelines in practice, content analysis was performed.ResultsThirty-one publications covering 28 unique studies were included. Eleven studies were from the UK, eight from the USA, four from Canada, two from the Netherlands, and one from each of the following countries: France, Mexico, and Australia. Most of the studies used qualitative methods exclusively (18/28). Overall, the vast majority of participants (n = 2784) were physicians (89%). The three most often reported barriers were: time constraints (18/28), lack of applicability due to patient characteristics (12/28), and lack of applicability due to the clinical situation (12/28). The three most often reported facilitators were: provider motivation (15/28), positive impact on the clinical process (11/28), and positive impact on patient outcomes (10/28).ConclusionThis systematic review reveals that interventions to foster implementation of shared decision-making in clinical practice will need to address a broad range of factors. It also reveals that on this subject there is very little known about any health professionals others than physicians. Future studies about implementation of shared decision-making should target a more diverse group of health professionals.

Patient-Physician Communication in the Context of Persistent Pain: Validation of a Modified Version of the Patients' Perceived Involvement in Care Scale

The purpose of this study was to evaluate the psychometric properties of a modified version of the Perceived Involvement in Care Scale (M-PICS), a measure designed to assess pain patients' perceptions of patient health care provider communication during the medical consultation. Eighty-seven breast cancer outpatients with persistent pain completed a battery of questionnaires, including the M-PICS. A factor analysis supported four factors. Factor 1 reflected health care provider information behaviors; Factor 2, health care provider facilitation of patient involvement; Factor 3, patient information provision; and Factor 4, patient participation in decision making. The M-PICS total had an internal consistency of 0.87; alphas for subscales ranged from 0.80 to 0.90. M-PICS scores related to measures of patient characteristics and outcomes, including pain-related communication barriers, psychological status, quality of life, and health care satisfaction, in predicted ways. The M-PICS is a reliable and valid measure of perceived patient-provider communication in the context of persistent pain.

The significance for decision-making of information that is not exchanged by patients and health professionals during consultations

Information exchange between patients and health professionals is fundamental to achieving patient participation in decision-making and shared decision-making is said to require the exchange of “all information relevant to decision-making”. This paper reports on a qualitative investigation of instances in which information that was potentially relevant to decision-making was not exchanged in consultations. Consultations from 5 diverse clinical areas in the UK were video-recorded and the health professionals and patients involved were interviewed separately before and after their consultations. This analysis is based on cases involving 20 patients. It draws on data from their 26-recorded consultations and from the 137 associated interviews. Several strategies were used to identify instances in which patients and/or health professionals did not disclose information that was potentially relevant to decision-making. Analysis focussed on the types of information not disclosed, the reasons that health professionals and patients gave for non-disclosure, and the apparent or potential significance of the non-disclosure. We identified 34 instances of non-disclosure of information relating to the patient's problem and 52 instances of non-disclosure of information relating to treatment or management options. The types of information not disclosed were diverse and the reasons given for non-disclosure varied. Some, but not all, instances of non-disclosure had negative implications for the quality of decision-making and/or the patient's healthcare experience. Our findings have implications for future attempts to examine information exchange in consultations—whether for research or for professional assessment purposes. In particular, they highlight the importance of appraising instances of non-disclosure of information in context and of recognising the limitations of approaches that rely on single consultations and/or single perspectives for assessments of information exchange.

Weakness in numbers

Health literacy is the ability to complete basic reading and numerical tasks required to perform in the health care environment.1 The specific aspect of literacy that involves solving problems requiring understanding and use of quantitative information is sometimes called numeracy. Numeracy skills include understanding basic calculations, time and money, measurement, estimation, logic, and performing multistep operations. Most importantly, numeracy also involves the ability to infer what mathematic concepts need to be applied when interpreting specific situations, and to use this information to problem solve. Clinicians, clinical care researchers, patient educators, and patients seem to have paid less attention to the numeracy component of health literacy. However, several trends in health care, including patient self-management and patient participation in decision making, strongly argue in favor of change. Two papers published in this issue of the Journal of General Internal Medicine2,3 motivate this exploration of the role of numeracy in health care, using the case of diabetes as an example.

Rochester Participatory Decision-Making Scale (RPAD): Reliability and Validity

We wanted develop a reliable and valid objective measure of patient-physician collaborative decision making, the Rochester Participatory Decision-Making Scale (RPAD). Based on an informed decision-making model, the RPAD assesses physician behavior that encourages patient participation in decision making. Data were from a study of physician-patient communication of 100 primary care physicians. Physician encounters with 2 standardized patients each were audio recorded, resulting in 193 useable recordings. Transcribed recordings were coded both with RPAD and the Measure of Patient-Centered Communication (MPCC), which includes a related construct, Finding Common Ground. Two sets of dependent variables were derived from (1) surveys of the standardized patients and (2) surveys of 50 patients of each physician, who assessed their perceptions of the physician-patient relationship. The RPAD was coded reliably (intraclass correlation coefficient [ICC] = 0.72). RPAD correlated with Finding Common Ground (r = 0.19, P < .01) and with the survey measures of standardized patient's perceptions of the physician-patient relationship (r = 0.32 - 0.36 [P < .005]) but less with the patient survey measures (r = 0.06 to 0.07 [P < .005]). Multivariate, hierarchical analyses suggested that the RPAD made a more robust contribution to explaining variance in standardized patient perceptions than did the MPCC Finding Common Ground. The RPAD shows promise as a reliable, valid, and easy-to-code objective measure of participatory decision making.

‘Unilateral’ and ‘bilateral’ practitioner approaches in decision-making about treatment

Practitioners can present and discuss decisions about the management of health problems in a variety of ways during consultations. This paper examines in detail how doctors talk with patients in relation to decision-making about treatment. Conversation analyses of decision-making sequences in consultations about diabetes in primary care and about treatment of ear nose and throat (ENT) cancer in a specialist oncology setting, both in the UK, revealed a spectrum of practitioner approaches ranging from more ‘bilateral’ to more ‘unilateral’. This paper identifies the key communicative and organisational features of these approaches and provides some preliminary observations about the implications of these for patient participation in decision-making.

Missed Expectations?

Physicians are encouraged to actively involve patients in clinical decision-making, but this expectation has not been adequately examined from the physicians' perspective. Our objective was to identify and characterize physicians' attitudes toward patient participation in decision-making and to gain insight into how they consequently think about and structure the decision-making process. This was a qualitative cross-sectional study of physicians' reported attitudes and practices. The study took place in private practice and academic physicians' practices. A total of 53 academic and private practice physicians from primary care and surgical specialties, ranging from first year residents to recently retired, participated in the study. We performed a qualitative analysis of semistructured individual interviews. The physicians in this study expressed consistently positive attitudes toward patient participation in medical decision-making. They identified patient autonomy as an essential justification for patient participation but often went beyond an autonomy-based rationale. Several were motivated by the fundamental principle of beneficence as well as their own self-interest in avoiding legal liability. Many physicians saw their role as an expert who educates the patient but retains control over the decision-making process; others took a more collaborative approach, encouraging patients to assume decisional priority. The decision-making process often was modified by patient, physician, and environmental factors. The physicians in this study demonstrated a positive, flexible approach toward including patients in decision-making. A one-dimensional model of shared decision-making based solely on the principle of autonomy fails to account for variability in how physicians allocate decisional priority and is therefore ethically inadequate.

Determinants of participation in treatment decision-making by older breast cancer patients.

To identify the impact of patient age and patient-physician communication on older breast cancer patients' participation in treatment decision-making. We conducted a cross-sectional survey of breast cancer patients aged 55 years or older (n = 222) in Los Angeles County. Patients received a breast cancer diagnosis between 1998 and 2000, and were interviewed on average 7.1 months (SD = 2.9) from diagnosis. All patient-physician communication variables were measured by patient self-report. Patient participation in treatment decision-making was defined by (1) questioning the surgeon about treatment, and (2) perception of self as the final decision-maker. In multiple logistic regression analyses, surgeons' specific solicitation of patients' input about treatment preferences had positive relationships with both dimensions of patient participation in decision-making, that is, questioning the surgeon (adjusted odds ratio [OR] = 2.09, 95% confidence interval [CI] = 1.05-4.16) and perceiving oneself to be the final decision-maker (OR = 2.38, CI = 1.08-5.28), controlling for patients' sociodemographic and case-mix characteristics and social support. Greater emotional support from surgeons was negatively associated with patient perception of being the final decision-maker. Physicians' information-giving and patient age were not associated with the participation measures. However, greater patient-perceived self-efficacy in patient-physician interactions was related to participation. In breast cancer patients aged 55 years and older, surgeons' solicitation of patients' treatment preferences was a powerful independent predictor of patient participation in treatment decision-making, as was patient's self-efficacy in interacting with physicians. Increasing both physicians' and patients' partnership-building skills might enhance the quality of treatment decision-making and treatment outcomes in this burgeoning patient population.

Decision-making models in Japanese psychiatry: Transitions from passive to active patterns

This study deconstructs the current dynamics of the physician–patient relationship in the treatment of minor mood disorders including depression in Japan. An in-depth qualitative investigation was conducted on psychiatrists employed at mental health clinics, university hospitals, and psychiatric hospitals. Triangulation was conducted concurrently using key informant interviews and periodic non-structured interviews with additional physicians and patients. Results revealed two patterns of omakase (entrusting) ( Omakase Model) and an emerging pattern of patient participation in decision making (Participatory Model). The pattern traditionally denoted by the Omakase Model encompasses an active and passive entrusting model. The phenomenon of an emerging Participatory Model was uncovered whereby an in-depth analysis led to an understanding behind the associative physician–patient relationship, communication patterns, and a patient’s level of awareness. It was found that while active participation in medical decision making is capable of raising the level of treatment efficacy, it is not only active participation in medical decision making, but also active participation in medical treatment that is valued in the physician–patient relationship. Ultimately, a patient actively participates in his or her medical treatment under either the active Omakase Model or Participatory Model, be it entrusting or participatory. Consequently, the active Omakase Model will continue to remain functional alongside the Participatory Model while the passive Omakase Model is likely to fade away in time.

Gynecologic cancer patients' psychosocial needs and their views on the physician's role in meeting those needs.

The aim of this study was to identify the psychosocial needs of patients after treatment for gynecological malignancies and their views concerning the role physicians should take in meeting those needs. Self-administered questionnaires were answered by 95 patients at least 6 months after completion of therapy. Topic areas included emotional needs, spiritual concerns, patient-family communication, patient participation in decision making, and advance directives. In addition, all participants completed the Functional Assessment of Cancer Therapy (FACT-G, version 4) quality of life questionnaire. Fifty-seven percent of respondents stated that they had needed help dealing with emotional problems, and 73% wanted the physician to ask whether help is needed. The most common emotional concerns were feeling nervous (40% of subjects), being worried (34%), fear (25%), needing someone to talk to (24%), sadness (21%), and loss of control (17%). Fifty-nine percent stated that physicians should ask whether help is needed in discussing spiritual matters. Sixty-one percent stated that physicians should ask patients whether they want help starting conversations with their families about difficult-to-raise topics such as the possibility of dying. Forty-six of 86 respondents (53%) stated that discussions about advance directives such as living wills should take place soon after the cancer diagnosis has been established. Most patients surveyed want physicians to take an active role in dealing with psychosocial needs.

Cancer patients' decision-making regarding treatment and nursing care.

Patient participation in decision-making has produced many debates among health care professionals. The research evidence concerning patient participation in decision-making is not clear, and shows conflicting results. To identify to what extent cancer patients participate in decision-making and to what extent background characteristics, information obtained and relationships with staff explain cancer patients' participation in decision-making. A structured questionnaire based on earlier research and qualitative interviews was designed. The questionnaire was completed by 273 cancer patients who were inpatients or outpatients in haematology, oncology clinics and other clinics at two university hospitals in Finland. The questionnaire consisted of five areas: (1) demographic data; (2) mood; (3) information obtained; (4) relationships with staff; and (5) decision-making. The scale used was ordinal. The data were analysed using descriptive statistics and nonparametric tests such as Mann-Whitney U-test, Kruskall-Wallis, and Wilcoxon matched-pairs signed-rank tests. The majority of the respondents perceived that they had participated in making treatment decisions at least to some extent, together with the physician. In decision-making about nursing care, respondents felt that they had participated most in decisions about personal hygiene, rest and sleep. Respondents' physical condition, marital status, age and time since diagnosis, as well as information obtained and relationships with staff, were associated with participation in decision-making. This study provided evidence that some cancer patients participated in decision-making and felt participation to be important. Staff played a crucial role in patient participation in decision-making. In future, staff should work to improve cancer patients' opportunities to participate in decision-making in order that those who wish to be involved can do so.

Gynecologic cancer patients' psychosocial needs and their views on the physician's role in meeting those needs

The aim of this study was to identify the psychosocial needs of patients after treatment for gynecological malignancies and their views concerning the role physicians should take in meeting those needs. Self-administered questionnaires were answered by 95 patients at least 6 months after completion of therapy. Topic areas included emotional needs, spiritual concerns, patient-family communication, patient participation in decision making, and advance directives. In addition, all participants completed the Functional Assessment of Cancer Therapy (FACT-G, version 4) quality of life questionnaire. Fifty-seven percent of respondents stated that they had needed help dealing with emotional problems, and 73% wanted the physician to ask whether help is needed. The most common emotional concerns were feeling nervous (40% of subjects), being worried (34%), fear (25%), needing someone to talk to (24%), sadness (21%), and loss of control (17%). Fifty-nine percent stated that physicians should ask whether help is needed in discussing spiritual matters. Sixty-one percent stated that physicians should ask patients whether they want help starting conversations with their families about difficult-to-raise topics such as the possibility of dying. Forty-six of 86 respondents (53%) stated that discussions about advance directives such as living wills should take place soon after the cancer diagnosis has been established. Most patients surveyed want physicians to take an active role in dealing with psychosocial needs.

Relationship between Alzheimer's disease severity and patient participation in decisions about their medical care.

To examine the relationships between Alzheimer's disease (AD) severity and patient participation in decisions about their medical care, we performed a cross-sectional study of 74 caregivers' ratings of the degree to which AD patients participate in making decisions about their medical care. The majority of the caregivers reported that they made the final decisions about medical care (n = 48, 64%), one-quarter (n = 19, 26%) reported an equal role, and a small proportion (n = 7, 9%) reported that the patient made the final decisions. Multivariate models showed that the significant predictors of the patient's participation in decisions about medical care were measures of dementia severity: Mini-Mental State Examination (MMSE) and Clinical Dementia Rating (CDR). Patients with mild-stage disease (CDR = 1 or MMSE > or = 20) are involved in decision making largely in a collaborative role with the caregiver. Beyond mild-stage disease, the clinician can largely expect that the caregiver is making the final decisions. These results illustrate how and when caregivers can expect changes in their decision making role.

Resistance to computer innovation

Dr. Lawrence Weed's "knowledge coupling" (KC) computer innovation (Weed, 1991; 1997; 2000) is designed to overcome the widely documented limitations of the human mind. By linking (or "coupling") patient-specific findings with relevant medical knowledge, KC tools exploit the power of the computer to reliably recall, process, and organize vast quantities of medical knowledge and information that would otherwise be missed during the clinical encounter. Further, KC tools offer an alternative strategy for managing clinical uncertainty, which also entails relinquishing personal responsibility for patients and decision making. Previously-learned orientations toward uncertainty and responsibility predispose physicians to resist this alternative strategy. Existing orientations are sustained by the broader institutional framework medicine. Nonetheless, changes in the institutional framework --- namely, greater patient participation in decision making and growing interest among third-parties to regulate medical care costs and quality --- will likely make it more difficult to sustain current orientations to clinical practice and will instead produce conditions that are more favorable to the widespread use of KC tools.

Health decision aids to facilitate shared decision making in office practice.

For medical decisions with more than one reasonable option, patient participation in decision making is often necessary to optimally match management decisions with patient preferences. Health decision aids are designed to facilitate shared decision making by helping patients and their physicians choose among reasonable clinical options. Although these aids vary in content, common denominators are the presentation of more than one reasonable strategy for a clinical management question and a description of the possible outcomes of the various options. Although the number of published randomized trials assessing the impact of health decision aids on the quality of medical decisions is limited (but growing), various types of decision aids do generally appear to inform patients about their treatment options better than "usual care" can. Little evidence is available to determine whether one type of decision aid is optimal, but more complicated programs seem to have larger effects. The cost-effectiveness of decision aids has not been studied, although it is enticing to think that the pattern of more conservative decisions by users of some decision aids could reduce medical care costs in a manner that is dictated by patient preferences.