Patient Involvement In Decision Research Articles

Assessing patients' experience of integrated care: a survey of patient views in the North West London Integrated Care Pilot.

Despite the importance of continuity of care and patient engagement, few studies have captured patients' views on integrated care. This study assesses patient experience in the Integrated Care Pilot in North West London with the aim to help clinicians and policymakers understand patients' acceptability of integrated care and design future initiatives. A survey was developed, validated and distributed to 2029 randomly selected practice patients identified as having a care plan. A total of 405 questionnaires were included for analysis. Respondents identified a number of benefits associated with the pilot, including increased patient involvement in decision-making, improved patient-provider relationship, better organisation and access to care, and enhanced inter-professional communication. However, only 22.4% were aware of having a care plan, and of these only 37.9% had a copy of the care plan. Knowledge of care plans was significantly associated with a more positive experience. This study reinforces the view that integrated care can improve quality of care and patient experience. However, care planning was a complex and technically challenging process that occurred more slowly than planned with wide variation in quality and time of recruitment to the pilot, making it difficult to assess the sustainability of benefits.

OP0299-HPR The Evaluation of A Patient Decision AID for Anti-Rheumatic Drugs

BackgroundResearch among Dutch arthritis patients has shown that quality improvement is needed in the field of “information about medication and treatment” and that patients want to be more involved in...

‘I’m an expert in me and I know what I can cope with’: Patient expertise in rheumatoid arthritis

The active involvement of patients in decision-making and the focus on patient expertise in managing chronic illness constitutes a priority in many healthcare systems including the NHS in the UK. With easier access to health information, patients are almost expected to be (or present self) as an 'expert patient' (Ziebland 2004). This paper draws on the meta-analysis of interview data collected for identifying treatment outcomes important to patients with rheumatoid arthritis (RA). Taking a discourse approach to identity, the discussion focuses on the resources used in the negotiation and coconstruction of expert identities, including domain-specific knowledge, access to institutional resources, and ability to self-manage. The analysis shows that expertise is both projected (institutionally sanctioned) and claimed by the patient (self-defined). We close the paper by highlighting the limitations of our pilot study and suggest avenues for further research.

‘I'll continue as long as I can, and die when I can't help it’: a qualitative exploration of the views of end-of-life care by those affected by head and neck cancer (HNC)

BackgroundEvidence currently suggests that many people would prefer to die at home. However, optimal end-of-life homecare depends on the patient's ability to express their care preferences, prognostic awareness, complexity of...

A daughter’s frustration with the dearth of patient- and family-centered care

Patient involvement in decision-making is an increasingly recognized ethical imperative, one that requires attention to health literacy. Health care that is truly patient- and family-centered, however, is the exception rather than the rule. This first person account of a hospitalization describes the lack of patient and family inclusion in decision-making, failure to use plain language and other health literacy strategies, and disregard for patient and family preferences. The author concludes that if the health care system is going to shift from paternalistic to patient- and family-centered, providers must be trained how to communicate and partner with patients and families. Even the most skilled health professionals, however, will not be able to deliver patient- and family-centered care if the system they work in is not designed to foster or support such care. Committed hospitals will integrate patient- and family-centered care throughout their organizations. This includes their mission statements, quality improvement activities, personnel policies, decision and self-management support, and patient portals. Payment policies can encourage, but are a blunt instrument to drive, health care toward patient and family-centered care. The author references resources to help hospitals make systematic changes to hard wire health literate and patient- and family-centered care.

Patient involvement in medication safety in hospital: an exploratory study.

Background Medication errors are common in hospital inpatients. While many interventions have been proposed to address these problems, few have been shown to have significant benefits. A complementary approach is to facilitate greater involvement of patients with their inpatient medication. However, there is relatively little research in this area and it is not known which interventions lead to improved healthcare outcomes. Work is therefore needed to investigate the roles that healthcare professionals and patients believe are appropriate for hospital inpatients to take relating to safety. Objective To explore the extent to which hospital inpatients reported that they engaged with medication safety-related behaviours, the extent to which they would like to, and the extent to which healthcare professionals reported that they would support such engagement. Setting An NHS hospital Trust in West London. Methods 100 Patients and healthcare professionals were recruited on ten wards within the Trust and invited to complete quantitative questionnaires. Data were analysed descriptively and exploratory comparisons made between different groups of respondents. Main outcome measures inpatient medication safety involvement scale and control preference scale for patient involvement in decision making. Results 100 patients (98 % response rate) and 104 healthcare professionals (59 % response rate) were recruited. The majority of patients and healthcare professionals were supportive of hospital inpatients being involved with their medication. However there was a significant gap between desire for patient involvement and what patients reported having experienced. Female patients and those under 65 wanted a significantly higher level of involvement than males and over 65s. Few associations were found between healthcare professionals’ reported support for involvement and their profession or gender. However, pharmacists and nurses were significantly more likely to report supporting patients asking questions about their medicines and self administering their own medicines than doctors. Conclusion Healthcare professionals and patients desire a higher level of patient involvement with their medication while in hospital than patients currently report. Interventions need to be developed to bridge the gap between desired and actual patient involvement.Electronic supplementary materialThe online version of this article (doi:10.1007/s11096-014-9951-8) contains supplementary material, which is available to authorized users.

Sedación paliativa: situación actual y áreas de mejora

ObjectiveTo determine the prevalence, epidemiology and registration status of palliative sedation (PS) prevalence in a teaching hospital, and to establish areas for improvement. MethodsA descriptive retrospective analysis was designed using the records from cancer patients who died between October and December 2010. The variables included were: epidemiological, inpatient unit, refractory symptom, drugs and dosages, and patient participation in the decision making process. The qualitative analysis followed a Delphi process: each participant received the overall performance of the group referred to as mean, median, 25th and 75th percentile. Items selected were those in which there was total or a high consensus. ResultsA total of 53deaths were identified. Just over half (51.92%) received PS. The mean age was 67.46 and 64% were males. The most frequent diagnosis was lung cancer (32.14%). Fifteen of the patient patients were in the Oncology ward, 7 in Hematology, and 4 at the Emergency Department. The PC team took part in 14 of the sedations performed. A refractory symptom was identified in 20. There were 11cases of dyspnea and 5cases of delirium. The mean time between admission and PS was 9.5days. The mean duration of PS was 1.2days, with a mean number of 2.6drugs used. There were 20informed consents which were all verbal. The mean time from last chemotherapy to death was 82days. For the Delphi process, 12 oncology or palliative care health professionals were included. A consensus was reached on the minimum data to be recorded in case of PS. This list includes: selection criteria, decision-making process and the sedation evolution. ConclusionsPS was applied in half of the patients who died due to dyspnea or delirium. Selection criteria were identified, as well as the type of PS and patient involvement in decision making process. A consensus was also reached on a minimum dataset that would help the clinician to record relevant information in PS.

2.0 Recommendations and auditable outcomes

2.0 Recommendations and auditable outcomes

An evidence-based shared decision making programme on the prevention of myocardial infarction in type 2 diabetes: protocol of a randomised-controlled trial.

BackgroundLack of patient involvement in decision making has been suggested as one reason for limited treatment success. Concepts such as shared decision making may contribute to high quality healthcare by supporting patients to make informed decisions together with their physicians.A multi-component shared decision making programme on the prevention of heart attack in type 2 diabetes has been developed. It aims at improving the quality of decision-making by providing evidence-based patient information, enhancing patients’ knowledge, and supporting them to actively participate in decision-making. In this study the efficacy of the programme is evaluated in the setting of a diabetes clinic.Methods/DesignA single blinded randomised-controlled trial is conducted to compare the shared decision making programme with a control-intervention. The intervention consists of an evidence-based patient decision aid on the prevention of myocardial infarction and a corresponding counselling module provided by diabetes educators. Similar in duration and structure, the control-intervention targets nutrition, sports, and stress coping. A total of 154 patients between 40 and 69 years of age with type 2 diabetes and no previous diagnosis of ischaemic heart disease or stroke are enrolled and allocated either to the intervention or the control-intervention. Primary outcome measure is the patients’ knowledge on benefits and harms of heart attack prevention captured by a standardised knowledge test. Key secondary outcome measure is the achievement of treatment goals prioritised by the individual patient. Treatment goals refer to statin taking, HbA1c-, blood pressure levels and smoking status. Outcomes are assessed directly after the counselling and at 6 months follow-up. Analyses will be carried out on intention-to-treat basis. Concurrent qualitative methods are used to explore intervention fidelity and to gain insight into implementation processes.DiscussionInterventions to facilitate evidence-based shared decision making represent an innovative approach in diabetes care. The results of this study will provide information on the efficacy of such a concept in the setting of a diabetes clinic in Germany.Trial registrationISRCTN84636255

An overview of patient involvement in healthcare decision-making: a situational analysis of the Malaysian context

BackgroundInvolving patients in decision-making is an important part of patient-centred care. Research has found a discrepancy between patients’ desire to be involved and their actual involvement in healthcare decision-making. In Asia, there is a dearth of research in decision-making. Using Malaysia as an exemplar, this study aims to review the current research evidence, practices, policies, and laws with respect to patient engagement in shared decision-making (SDM) in Asia.MethodsIn this study, we conducted a comprehensive literature review to collect information on healthcare decision-making in Malaysia. We also consulted medical education researchers, key opinion leaders, governmental organisations, and patient support groups to assess the extent to which patient involvement was incorporated into the medical curriculum, healthcare policies, and legislation.ResultsThere are very few studies on patient involvement in decision-making in Malaysia. Existing studies showed that doctors were aware of informed consent, but few practised SDM. There was limited teaching of SDM in undergraduate and postgraduate curricula and a lack of accurate and accessible health information for patients. In addition, peer support groups and 'expert patient’ programmes were also lacking. Professional medical bodies endorsed patient involvement in decision-making, but there was no definitive implementation plan.ConclusionIn summary, there appears to be little training or research on SDM in Malaysia. More research needs to be done in this area, including baseline information on the preferred and actual decision-making roles. The authors have provided a set of recommendations on how SDM can be effectively implemented in Malaysia.

Palliative sedation in Dutch general practice from 2005 to 2011: a dynamic cohort study of trends and reasons

Little is known about the quantity and reasons for use of palliative sedation in general practice. To gain more insight into the trends of and reasons for palliative sedation in Dutch general practice. Dynamic cohort study using registrations and questionnaire data of Dutch GPs. Method Data collected in the years from 2005 until 2011 in the Dutch Sentinel General Practice Network were analysed. Trends and reasons for use of palliative sedation were analysed using multilevel analyses to control for clustering of observations within general practices. From 2005-2011, 183 cases were reported from 56 general practices. The incidence of palliative sedation fluctuated between 33.7 per 100 000 patients in 2006 and 15.2 in 2011. No rise or decline during the period was observed. Palliative sedation was applied in 5.7% of all deaths and most frequently used in younger patients with cancer. The mean number of refractory symptoms was 2.6 (SD 1.2); pain (69.4%), dyspnoea (53.0%), and fear (39.3%). Patient involvement in decision making before the start of palliative sedation (87.4%) was less frequently present in patients suffering from cardiovascular or chronic obstructive pulmonary disease and in older patients compared to patients with cancer (P<0.05). Pending euthanasia requests were present in 20.8% of cases; the choice for palliative sedation in these cases was clearly motivated. Palliative sedation is performed in a small proportion of dying patients in Dutch general practice, without a rise or decline observed from 2005 to 2011. Patients with non-cancer diseases are less frequently involved in decision making than patients with cancer, possibly related to sudden deterioration.

The patient perspective and physician's role in making decisions on instituting dialysis

Shared decision making describes an approach to medical decision making that lies between paternalism and autonomy [1]. This model of decision making, described recently as the ‘pinnacle of patient-centered care’ [2] is quickly becoming the preferred approach to medical decisions, where there is no one ‘best’ treatment option. In these circumstances, involvement of patients in decision making helps us to ensure that treatment decisions reflect the patient's preferences and values.

SP0039 Development of a Web-Based Patient Decision AID to Support Arthritis Patients with Making Decisions About Medication.

BackgroundIncreasingly, patients are encouraged to participate in treatment decisions. Shared Decision Making (SDM) is assumed to have various potential advantages, including improved satisfaction, less decisional conflict and better treatment adherence....

Personal values and cultural diversity

Cross-cultural encounters in medicine are increasing in multi-ethnic societies and cultural pluralism enriches our lives. Yet, when values and ethical norms diverge in clinical encounters, bedside misunderstanding and conflicts can arise. Examples are the diverse different attitudes and practices of truth-telling, roles of families with regard to information and decision-making, approaches to end-of-life matters and significance of caregiving in different cultures. Understanding and negotiating these differences in the clinical setting is impossible without analyzing the meaning of culture and values. Culture shapes the experience and perception of illness and influences the coping mechanism adopted by each patient, through different values and belief systems. While a framework of common values underlies any therapeutic relationship, cultural differences may have major impact on the practice of medicine. In cultures centered on individual rights and freedom, for example, patient autonomy is the highest ethical value and patient information and active participation to the decision-making process are the norm. In contrast, in family and community-centered cultures, connectedness and reciprocal protection are highly valued, leading to lack of disclosure of medical truth and of patient involvement in decision-making. While in western cultures, cure is the highest goal of medicine, in cultures where suffering has redemptive meanings or endurance is supremely valued, traditional healing methods and goals differ. In this article, we attempt to clarify the complexity of cultural diversity with regard to values and norms that influence how people deal with illness, suffering, and dying by analyzing a clinical case and introducing the notion of cultural competence.

Clinicians' involvement of patients in decision making. A video based comparison of their behavior in public vs. private practice.

BackgroundLittle is known about the extent to which Peruvian physicians seek to involve patients in shared decision making, or about the variation in these efforts across different settings.ObjectiveTo measure the extent to which Peruvian clinicians involve their patients in decision making and to explore the differences between clinicians’ behavior in private vs. public practice.DesignVideographic analysis.Participants and SettingSeven academic physicians who provided care to patients in a public and a private setting participate in this study. All the encounters in both settings were filmed on one random day of February 2012. Approach: Two raters, working independently and in duplicate used the 12-item OPTION scale to quantify the extent of physician effort to involve patients in shared decision making (with 0 indicating no effort and 100 maximum possible effort) in 58 video recordings of usual clinical encounters in private and public practice.ResultsThe mean OPTION score was 14.3 (SD 7.0). Although the OPTION score in the private setting (mean 16.5, SD 7.3) was higher than in the public setting (mean 12.3 SD 6.1) this difference was not statistically significant (p = .09).ConclusionPeruvian academic physicians in this convenience sample barely sought to involve their patients in shared decision making. Additional studies are required to confirm these results which suggest that patient-centered care remains an unfulfilled promise and a source of inequity within and across the private and the public sectors in Peru.

Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument

We have no clear overview of the extent to which health-care providers involve patients in the decision-making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this. To systematically review studies that used the OPTION instrument to observe the extent to which health-care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation. We conducted online literature searches in multiple databases (2001-12) and gathered further data through networking. (i) OPTION scores as reported outcomes and (ii) health-care providers and patients as study participants. For analysis, we only included studies using the revised scale. Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting. We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient-involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0-100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15). Whatever the clinical context, few health-care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.

Tablets in Trauma: Using Mobile Computing Platforms to Improve Patient Understanding and Experience

Tablets are becoming commonplace in the health care setting. Patients often request to view their radiographs after sustaining trauma. This can be challenging, especially if patients are immobile. The authors performed a prospective, questionnaire-based study to assess inpatient desire to view radiographs on tablets and whether viewing images affected patient-rated outcomes of understanding and satisfaction. Enabling trauma patients to view their images on a tablet is a worthwhile practice because it improves patient involvement in decision making, satisfaction, perceived understanding, and overall experience.

Translating comparative effectiveness of depression medications into practice by comparing the depression medication choice decision aid to usual care: study protocol for a randomized controlled trial

BackgroundComparative effectiveness research (CER) documents important differences in antidepressants in terms of efficacy, safety, cost, and burden to the patient. Decision aids can adapt this evidence to help patients participate in making informed choices. In turn, antidepressant therapy will more likely reflect patients’ values and context, leading to improved adherence and mood outcomes.Methods/DesignThe objective of this study is to develop the Depression Medication Choice decision aid for use during primary care encounters, and to test its efficacy by conducting a clustered practical randomized trial comparing the decision aid to usual depression care in primary care practices.We will use a novel practice-based, patient-centered approach based on participatory action research that involves a multidisciplinary team of designers, investigators, clinicians, patient representatives, and other stakeholders for the development of the decision aid. We will then conduct a clustered practical randomized trial enrolling clinicians and their patients (n = 300) with moderate to severe depression from rural, suburban and inner city primary care practices (n = 10). The intervention will consist of the use of the depression medication choice decision aid during the clinical encounter. This trial will generate preliminary evidence of the relative impact of the decision aid on patient involvement in decision making, decision making quality, patient knowledge, and 6-month measures of medication adherence and mental health compared to usual depression care.DiscussionUpon completion of the proposed research, we will have developed and evaluated the efficacy of the decision aid depression medication choice as a novel translational tool for CER in depression treatment, engaged patients with depression in their care, and refined the process by which we conduct practice-based trials with limited research footprint.Trial registrationClinical Trials.gov: NCT01502891

Trying to Optimise the German Version of the OPTION Scale Regarding the Dyadic Aspect of Shared Decision Making

The OPTION scale ("observing patient involvement in decision making") assesses the extent to which clinicians involve patients in decisions across a range of situations in clinical practice. It so far just covers physician behavior. We intended to modify the scoring of the OPTION scale to incorporate active patient behavior in consultations. Modification was done on scoring level, attempting a dyadic, relationship-centred approach in that high ratings can be evoked also by the behaviour of active patients. The German version of the OPTION scale was compared with a modified version by analysing video recordings of primary care consultations dealing with cardiovascular prevention. Fifteen general practitioners provided 40 videotaped consultations. Videos were analysed by two rater pairs and two experts in shared decision making (SDM). Reliability measures of the modified version were lower than those of the original scale. Significant associations of the dichotomised scale with the expert SDM rating as well as with physicians' expertise in SDM were only found for the modified OPTION scale. Receiver Operating Characteristic (ROC) analyses confirmed a valid differentiation between the presence of SDM (yes/no) on total score level, even though the cut-off point was quite low. Standard deviations of the single items in the modified version were higher compared to the original OPTION scale, while the means of total scores were similar. The original OPTION scale is physician-centered and neglects the activity and a possible self-involvement of the patient. Our modified instruction was able to capture the dyadic element partially. The development of a separate dyadic instrument might be more promising.

What Is Shared in Shared Decision Making? Complex Decisions When the Evidence Is Unclear

Patient involvement in decisions is central to patient-centered care. Yet many important decisions must be made in complex, ambiguous clinical situations in which all possible options cannot be known, evidence is inadequate to inform patients' preferences fully, and/or patients are unclear about their desired level of involvement. In these situations, preferences are shaped by affect, framing, and "collaborative cognition" among clinicians, patients, and their families; thus, decisions are often relational, dynamic, iterative, provisional, and/or conditional. Clinicians can help patients achieve greater autonomy by engaging both intuitive and deliberative decision-making processes ("whole mind") and involving others in exploring, clarifying, and co-constructing patients' preferences ("shared mind"). Clinical and interpersonal relationships can promote effective decision making through developing a shared attentional focus, tailoring information, and identifying conditions under which provisional preferences might change. Information technology and health systems offer untapped potential to deepen the relationships and conversations within which decisions are made.