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PubMed2003

Evolving the multiple roles of 'patients' in health-care research: reflections after involvement in a trial of shared decision-making.

OBJECTIVE: This paper offers 'consumer-led' reflections by steering group members of a patient-centred research study involving consumer advocates, patients' associations and patients, throughout the whole study, from pre- to post-study phases. ORIGINAL STUDY DESIGN: The study: 'Shared decision making and risk communication in general practice' incorporated systematic reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomized trial of professional skill development, all informed by consumer and patient engagement. SETTING AND PARTICIPANTS: The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients at these practices. DISCUSSION: Consumers and patients contributed to several stages of the research from inception and design, securing of funding, implementation of the protocol, and interpretation and dissemination of the findings. 'Patient involvement' research initiatives that include an equally wide variety of 'user' participants as 'health-professional' participants, accountable to a 'Health in Partnership' funded project, require a user-led viewpoint to be presented and disseminated. This paper presents reflections on the processes of the research, the interpretations of study findings by the involved parties, and notes how this model is fundamental to effective research in the field of patient-centred health care if future practice, policy and research are to change.

Decision Making↗
PubMed2006

Development and first validation of the shared decision-making questionnaire (SDM-Q).

OBJECTIVE: Due to a lack of valid German instruments measuring shared decision-making (SDM), a theory-driven questionnaire (SDM-Q) to measure the process of SDM was developed and validated. METHODS: As a theoretical basis steps of the SDM process were defined in an expert panel. Item formulation was then conducted according to the Delphi method. For the first validation on a mixed sample Rasch analysis was used to eliminate items not fitting the construct thus receiving a unidimensional scale. RESULTS: After eliminating 4 items the remaining 11 form a unidimensional scale with an acceptable reliability for person measures (0.77) and very good reliability for item difficulties (0.95). Analysis of subgroups revealed a different use of items in different conditions. Furthermore the scale showed high ceiling effects. CONCLUSION: A new theory-driven instrument to measure the process of SDM has been developed and validated by use of a rigorous method revealing first promising results. Yet the ceiling effects require the addition of more discriminating items, and the different use of items in different conditions demands an in depth analysis. PRACTICE IMPLICATIONS: While the concept of SDM is constantly receiving more attention in medical practice, its valid and reliable measurement remains challenging.

Decision Making↗
PubMed1999

Impact of a shared decision-making program on patients with benign prostatic hyperplasia.

OBJECTIVES: To determine patient views about the Shared Decision-Making Program (SDP), an interactive videodisk program designed to inform patients with benign prostatic hyperplasia (BPH) about their condition and treatment options and to determine its impact on perceived knowledge and treatment preference. METHODS: Six hundred seventy-eight patients with symptomatic BPH from eight Canadian centers viewed the SDP. Before and after viewing the video, patients answered questionnaires designed to assess treatment preference, knowledge gained, and satisfaction with this educational format. A 1-year follow-up survey was also conducted. RESULTS: Most patients showed a high desire for information and high satisfaction with the SDP; this satisfaction persisted at 1 year. Patients' self-reported knowledge increased significantly (P <0.0001). However, the SDP did not alter initial treatment preferences among those with already formed preferences, although it aided almost half of those initially undecided in forming a preference. Viewing the SDP also appeared to enhance the physician-patient relationship. CONCLUSIONS: Patients saw the SDP as an effective method for teaching patients about BPH and the risks and benefits of various treatments, clarifying particular areas about which many patients appear to have a desire for more information than is often provided. Patients were enthusiastic about the educational value of the program, and their active participation in the decision-making process may actually enhance the physician-patient relationship. Contrary to other studies, we found no significant alterations in treatment preferences. Problems relating to the cost and timely updating of the software need to be addressed for these kinds of programs to realize their full potential.

Aged↗
PubMed2004

Shared decision-making, health choices and the menopause.

The growing influence of the mass media on public understanding of health care matters has increased both information and misinformation in patients seeking help with menopausal symptoms. The use of shared decision-making strategies provides the opportunity to engage the patient in taking some responsibility for their own treatment. It also allows the identification and correction of any distortions in the perceived balance of evidence for and against any particular treatment. Shared decision-making balances the need to respect patients' values and autonomy with the drive towards evidence-based medicine and clinical cost-effectiveness. Although ways of achieving such a balance are much discussed, the current need is for research which can identify effective strategies that allow the principles of "shared decision-making" and "evidence-based patient choice" to be validated and applied in clinical practice. Previous research focused on hormone replacement therapy indicates that the patient's decision is the outcome of the way they balance the pros and cons of taking (or not taking) it, and that their satisfaction with the decision is strongly associated with the perception that they have been given information about the full range of treatment available. It therefore seems likely that patients will respond more positively to consultations which include discussion of hormone replacement therapy alongside alternative strategies such as natural remedies and dietary/lifestyle changes. Psychological factors influencing treatment choice and the decision making process are discussed, and clinical and research implications for clinical practice in the menopause clinic examined.

Decision Making↗
PubMed2005

[Shared decision-making as a new quality indicator in nephrology: a nationwide survey in Germany].

BACKGROUND AND PURPOSE: Shared decision-making (SDM) as a model in physician-patient interaction is gaining relevance in the German health system. By applying this model, mid- and long-term improvements are expected especially in the outcomes of chronic diseases. Up to now, there has hardly been any empirical data available in German health services research regarding the state and development of SDM. This study establishes a baseline and provides actual data on this subject based on a German-wide survey of end-stage renal disease (ESRD) patients. METHODS: Standardized German-wide survey of 6,614 patients with ESRD. The questionnaire included an instrument to measure the patients' perceived involvement in care (PICS) which had been translated and validated before. RESULTS: 82% of the questioned patients feel their physicians facilitated involvement in decision making. 81% of the patients actively inform themselves concerning their disease and treatment options. 69% state that SDM has taken place. Age, years on dialysis and gender correlate with perceived involvement. CONCLUSION: This paper provides a valid baseline for the prospective research of SDM in ESRD. The results indicate that dialysis patients are willing to participate in the process of medical decision-making. Characteristics and preferences of the patients should be taken into account not only in everyday clinical interactions. They could be monitored systematically within the framework of quality management and used as potential for quality improvement.

Communication↗
PubMed2003

Spinal metastasis in the elderly.

Bony metastases are a frequent problem in elderly patients affected by cancer, and those with bony metastases involve the spine in approx. 50%. The most frequent spinal metastases (60%) are from breast, lung, or prostate cancer. The chance that an elderly patient (60-79 years old) is affected by bony metastases is four times higher in men and three times higher in women than a middle-aged patient (40-59 years old). Since the medical treatment with all the adjuvant treatment options prolong the survival of this particular patient group, the spinal metastases may become a mechanical issue, thus requesting surgical treatment. Different classification systems have been proposed to rationalize surgical indications, some concentrating solely on the local spinal tumor involvement and some including the overall clinical situation. Since most of the surgical options are of palliative character, it is more important to base the decision on an overall clinical classification including the different treatment modalities-irradiation, chemotherapy, steroids, bisphosphonates, and surgery-to make a shared decision. In case surgery is indicated-neural compression, pathological fracture, instability, and progressive deformity, nursing reasons-the most straightforward procedures should be chosen, which may not need an intensive care unit stay. In the thoracolumbar spine a posterior decompression and posterolateral vertebral body resection through a posterior approach only, with a concomitant reconstruction and stabilization, has shown to work sufficiently well. In the middle and lower cervical spine the anterior approach with anterior decompression and anterior column reconstruction is most effective and has a low morbidity, whereas the occipitocervical junction can generally be treated by posterior resection and stabilization. The outcome should be determined by the survival time in an ambulatory, independent status, where pain is controlled, and the patient is not hospitalized. Surgical management shows the greatest improvement in pain reduction, but also in other domains of quality of life. Since prospective randomized studies comparing different treatment modalities for spinal metastases including surgery are not available and are ethically difficult to achieve, each case remains an interdisciplinary, shared decision making process for what is considered best for a patient or elderly patient. However, whenever surgery is an option, it should be planned before irradiation since surgery after irradiation has a significant higher complication rate.

Aged↗
PubMed1999

Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model.

In this paper we revisit and add elements to our earlier conceptual framework on shared treatment decision-making within the context of different decision-making approaches in the medical encounter (Charles, C., Gafni, A., Whelan, T., 1997. Shared decision-making in the medical encounter: what does it mean? (or, it takes at least two to tango). Social Science & Medicine 44, 681 692.). This revised framework (1) explicitly identifies different analytic steps in the treatment decision-making process; (2) provides a dynamic view of treatment decision-making by recognizing that the approach adopted at the outset of a medical encounter may change as the interaction evolves; (3) identifies decision-making approaches which lie between the three predominant models (paternalistic, shared and informed) and (4) has practical applications for clinical practice, research and medical education. Rather than advocating a particular approach, we emphasize the importance of flexibility in the way that physicians structure the decision-making process so that individual differences in patient preferences can be respected.

Canada↗
PubMed2000

The use of video-based patient education for shared decision-making in the treatment of prostate cancer.

Increased consumerism, patient empowerment, and autonomy are creating a health care revolution. In recent years, the public has become better informed and more sophisticated. An extraordinary amount of treatment advice from books, the media, and the Internet is available to patients today, although much of it is confusing or conflicting. Consequently, the traditional, paternalistic doctor-patient relationship is yielding to a more consumerist one. The new dynamic is based on a participatory ethic and a change in the balance of power. This shared decision-making creates a true partnership between professionals and patients, in which each contributes equally to decisions about treatment or care. Evidence suggests that in diseases such as prostate cancer, where there may be a number of appropriate treatment options for a particular patient, shared decision-making may lead to improved clinical and quality-of-life outcomes. This article explores the evolving relationship between the physician and patient, the pros and cons of shared decision-making, and the use of video technology in the clinical setting. The authors review the use of medical decision aids, including a video-based educational program called CHOICES, in the treatment of prostate cancer and other diseases.

Decision Making↗
PubMed1991

Health care decision making by the elderly: I get by with a little help from my family.

Shared decision making about placement and medical interventions can be empowering to the older person involved, relieve burdens on the older person and family members, and facilitate better surrogate decision making later. Potential dangers of the shared process include coercion, conflicts of interest, and disagreements between family members. New legal concepts, similar to those governing property, could help our legal system better accommodate the realities of shared decision making.

Aged↗
PubMed2026

Preemptive hematopoietic stem cell transplantation in RUNX1 familial platelet disorder: a shared decision-making framework.

RUNX1 familial platelet disorder (RUNX1-FPD) is associated with a 35-50% lifetime risk of hematologic malignancy (HM). Like all germline HM predisposition syndromes, RUNX1-FPD can only be cured with allogeneic hematopoietic stem cell transplantation (HSCT). Current genetic screening techniques allow for early detection of germline predisposition and, consequently, the opportunity for HSCT before overt development of HM (i.e., preemptive HSCT). However, there is as yet no consensus on the use of preemptive HSCT for RUNX1-FPD. Described here is the case of an individual with RUNX1-FPD and a family history of HM who underwent preemptive HSCT. We introduce a shared decision-making framework designed to support individuals with RUNX1-FPD, their families, and their multidisciplinary clinical teams in evaluating whether and when to pursue preemptive HSCT versus continued surveillance. The framework reviews key medical factors that influence the decisions regarding timing of HSCT, including germline and somatic variants, clonal changes over time, familial history of HM, early morphologic or hematologic features, impacts on bleeding-related quality of life, and donor availability. The framework also summarizes the major risks and uncertainties potentially associated with preemptive HSCT while highlighting the associated ethical challenges. Together, the case and framework provide a structured, patient-centered approach for navigating the complex clinical decision of preemptive HSCT. Ongoing collaborative efforts to define cytogenetic and clonal changes preceding malignant transformation in RUNX1-FPD will refine the framework and bolster individualized treatment strategies aimed at preventing HM and improving the quality of life of individuals with RUNX1-FPD.

Humans↗
PubMed2004

Randomized trial of a shared decision-making intervention consisting of trade-offs and individualized treatment information for BRCA1/2 mutation carriers.

PURPOSE: To evaluate a shared decision-making intervention (SDMI) for BRCA1/2 mutation carriers who have to make a choice between screening and prophylactic surgery for breasts and/or ovaries. PATIENTS AND METHODS: The SDMI consisted of two value assessment sessions, using the time trade-off method, followed by individualized treatment information based on (quality-adjusted) life expectancy. After the baseline assessment (2 weeks after a positive DNA test result), women were randomly assigned to the SDMI group (n = 44), receiving the SDMI 2 months after the test result, or to the control group (n = 44). The short- and long-term effects, 3 and 9 months after the test result, were assessed using questionnaires. Data were collected on well-being, treatment choice, and decision-related outcomes. RESULTS: In the short term, the SDMI had no effect. In the long term, with respect to well-being, patients in the SDMI group had less intrusive thoughts (P =.05) and better general health (P =.01) and tended to be less depressed (P =.07). With respect to decision-related outcomes for the breasts, the SDMI group held stronger preferences (P =.02) and agreed more strongly to having weighed the pros and cons (P =.01). No effect was found on treatment choice. In the long term, interaction effects between the SDMI and cancer history were found. The SDMI showed an overall beneficial effect for unaffected women, whereas affected women tended to experience detrimental effects. CONCLUSION: We conclude that the SDMI improved decision making in unaffected BRCA1/2 mutation carriers. Supporting decision making in a systematic way using trade-offs is beneficial for these women.

Adult↗
PubMed1999

Shared decision-making in primary care: the neglected second half of the consultation.

The second half of the consultation is where decisions are made and future management agreed. We argue that this part of the clinical interaction has been 'neglected' during a time when communication skill development has been focused on uncovering and matching agendas. There are many factors, such as the increasing access to information and the emphasis on patient autonomy, which have led to the need to give more attention to both the skills and the information required to appropriately involve patients in the decision-making process. This analysis, based on a literature review, considers the concept of 'shared decision-making' and asks whether this approach is practical in the primary care setting. This study, and our ongoing research programme, indicates that future developments in this area depend on increasing the time available within consultations, require improved ways of communicating risk to patients, and an acquisition of new communication skills.

Ethics, Medical↗
PubMed2004

Steroid treatment for relapses in multiple sclerosis - the evidence urges shared decision-making.

OBJECTIVES: Therapy of acute relapses in multiple sclerosis with corticosteroids (CC) remains uncertain with respect to route, dosage and effectiveness. This makes the treatment of relapses a clinical field where 'shared decision-making (SDM)' could be of advantage for the patients. A prerequisite for SDM is the provision of evidence-based information for the patients. The British General Medical Council (GMC) has published ethical guidelines on seeking patients' consent for medical interventions, formulating topics of information patients need in order to make an informed treatment decision. METHODS: Medical databases were searched for evidence on the treatment of acute relapses with CC. RESULTS: The available evidence on relapse treatment is ambiguous and weak. It does not provide enough evidence to sufficiently inform patients following the topics formulated by the GMC. CONCLUSION: Good evidence is lacking, supporting the concept of SDM in the therapy of relapses.

Adrenal Cortex Hormones↗
PubMed2006

Information and shared decision-making are top patients' priorities.

BACKGROUND: The profound changes in medical care and the recent stress on a patient-centered approach mandate evaluation of current patient priorities. METHODS: Hospitalized and ambulatory patients at an academic medical center in central Israel were investigated. Consecutive patients (n = 274) indicated their first and second priority for a change or improvement in their medical care out of a mixed shortlist of 6 issues, 3 related to patient-physician relationship (being better informed and taking part in decisions; being seen by the same doctor each time; a longer consultation time) and 3 issues related to the organizational aspect of care (easier access to specialists/hospital; shorter queue for tests; less charges for drugs). RESULTS: Getting more information from the physician and taking part in decisions was the most desirable patient choice, selected by 27.4% as their first priority. The next choices - access and queue - also relate to more patient autonomy and control over that of managed care regulations. Patients studied were least interested in continuity of care, consultation time or cost of drugs. Demographic or clinical variables were not significantly related to patients' choices. CONCLUSION: Beyond its many benefits, being informed by their doctor and shared decision making is a top patient priority.

Academic Medical Centers↗
PubMed2004

[Being with the carer: a dimension of the caring process].

This study presents one of the dimensions of the caring process in nursing, under the nurses' view, in a hospital reality. It was brought to understanding through a qualitative study with a phenomenological-hermeneutical approach. One of the dimensions revealed was to be with the carer in the world of the cared patient which revealed the following constructs: the being-there of the nursing carer; sharing decision making processes; sharing knowledge; building up a caring relationship. The caring process in nursing manifests itself by meeting caring among carers, where the way of being of its existence happens in an authentic way, promoting an exchange of lived experiences, feelings and emotions, building up a caring relationship.

Humans↗
PubMed2001

Evaluation of the quality of patient information to support informed shared decision-making.

OBJECTIVES: (a) To find out how much patient information material on display in family physicians' offices refers to management choices, and hence may be useful to support informed and shared decision-making (ISDM) by patients and (b) to evaluate the quality of print information materials exchanged during the consultation, i.e. brought in by patients or given out by family physicians. DESIGN: All print information available for patients and exchanged between physicians and patients was collected in a single complete day of the office practices of 21 family physicians. A published and validated instrument (DISCERN) was used to assess quality. SETTING AND PARTICIPANTS: Community office practices in the greater Vancouver area, British Columbia, Canada. The physicians were purposefully recruited by their association with the medical school Department of Family Practice, their interest in providing patients with print information and their representation of a range of practice types and location. MAIN VARIABLES STUDIED: The source of the pamphlets and these categories: available in the physicians' offices; exchanged between physician and patient; and produced with the explicit or apparent intent to support evidence-based patient choice. MAIN OUTCOME MEASURES: The quality of the print information to support ISDM, as measured by DISCERN and the ease of use and reliability of the DISCERN tool. RESULTS AND CONCLUSIONS: Fewer than 50% of pamphlets available in these offices fulfilled our minimum criteria for ISDM (mentioned more than one management option). Offices varied widely in the proportion of pamphlets on display that supported ISDM and how particular the physician was in selecting materials. The DISCERN tool is quick, valid and reliable for the evaluation of patient information. The quality of patient information materials used in the consultation and available in these offices was below midpoint on the DISCERN score. Major deficiencies were with respect to the mention of choices, risks, effect of no treatment or uncertainty and reliability (source, evidence-base). Good quality information can be produced; some is available locally.

British Columbia↗
PubMed2001

Shared decision-making and the orthopaedic workforce.

Studies of physician workforce need a standard of an appropriately sized workforce to compare projections. Although many studies use average rates of healthcare use as a standard, regional benchmarks provide a pragmatic alternative approach to estimating a reasonably sized physician workforce and avoid many of the problems of needs- and demand-based planning. Wide geographic variations in the rates of many procedures, unexplained by differences in population characteristics, suggest that supply-induced demand or physician practice style or both may be the major determinates of the rates for these procedures. In the current study, the authors explore some of these differences in orthopaedic procedure rates and their implications for workforce planning. For example, the rates of hip fracture are fairly uniform across geographic regions, whereas the rates of spine surgery vary sixfold and the rates of spinal fusion vary 10-fold. Shared decision-making is the process of giving patients informed choices about their treatment options based on current best evidence. Careful studies of treatment effectiveness and shared decision-making hold the promise of allowing patients' preferences and values to determine the right rate of healthcare use. These rates could allow workforce projections to be compared with optimal benchmarks for future planning.

Benchmarking↗
PubMed2005

When patients lack capacity: the roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions.

Current approaches to end-of-life decision making are widely considered inadequate. We explored these complexities by examining how patients with terminal diagnoses would choose to involve their physicians and loved ones in making medical decisions, assuming they were able and unable to participate. Cross-sectional interviews of 130 patients recently diagnosed with fatal conditions were conducted. Patients were recruited from two academic medical centers using a modification of the Decision Control Preferences Scale, ranging from independent decision making to decision making that relies upon others. Patients were asked how they would balance their own wishes relative to the input of physician and loved ones in making medical decisions, and to weigh the input of loved ones relative to physician. Most patients (52%), assuming they had the capacity, would opt to share decision making with their physicians, but 15% would defer to their physicians and 34% would make decisions independently. Similarly, 44% would share decision making with their loved ones, but fewer (6%) would defer to their loved ones. Thirty-nine percent would rely upon their physicians' judgments about what would be best for them rather than their own wishes if they became unconscious, compared with 15% who would do so if they were conscious (P < 0.001). Nonetheless, patients were more likely to weigh their loved ones' input more heavily than their physicians' input if they were unconscious (33%) than if they were conscious (7%, P = 0.05). Race, religion, gender, diagnosis, and health status were largely unassociated with patients' decision control preferences. Patients with terminal diagnoses report a wide diversity of decision control preferences, but most would opt to share decision making with their physicians and loved ones. If unable to decide for themselves, they shift toward greater reliance on physician input relative to their own wishes but would weigh loved ones' input more heavily than physician input. Deciding for patients who cannot speak for themselves may be more complex than has previously been reflected in law, policy, or clinical ethics.

Advance Directives↗