Improve Patient Participation Research Articles

The Patient Participation Culture Tool for healthcare workers (PaCT-HCW) on general hospital wards: A development and psychometric validation study

BackgroundPatient participation is an important subject for modern healthcare. In order to improve patient participation on a ward, the ward's culture regarding patient participation should first be measured. In this study a measurement tool for patient participation culture from the healthcare worker's perspective, the Patient Participation Culture Tool for healthcare workers (PaCT-HCW), was developed and psychometrically evaluated. ObjectivesThe aim of this study was to develop and validate a tool that measures the healthcare worker-related factors of patient participation and information sharing and dialogue in patient participation from the healthcare worker's perspective in order to represent the patient participation culture on general and university hospital wards. DesignA four-phased validation study was conducted: (1) defining the construct of the PaCT-HCW, (2) development of the PaCT-HCW, (3) content validation, and (4) psychometric evaluation. SettingsThe Belgian Federal Government invited all Flemish general and university hospitals by e-mail to distribute the PaCT-HCW in their organization. Fifteen general hospitals took part in the study. ParticipantsUnits for surgery, general medicine, medical rehabilitation, geriatric and maternal care were included. Intensive care-units, emergency room-units, psychiatric units and units with no admitted patients (e.g. radiology) were excluded. The respondents had to be caregivers, with hands-on patient contact, who worked on the same ward for more than six months. Nursing students and other healthcare workers with short-time internship on the ward were excluded. The tool was completed by 1329 respondents on 163 wards. MethodsThe PaCT-HCW was psychometrically evaluated by use of an exploratory factor analysis and calculation of the internal consistency. ResultsA model containing eight components was developed through a literature review, individual interviews, and focus interviews. The developed model showed high sampling adequacy and the Bartlett's test of sphericity was significant. An exploratory factor analysis identified eight components, explaining 49.88% of the variances. The eight original included components were retained. The PaCT-HCW also showed high internal consistency. ConclusionThe PaCT-HCW offers an in-depth and differentiated perspective of the healthcare worker-related factors of patient participation and information sharing and dialogue in patient participation. The PaCT-HCW has been developed thoroughly, resulting in a strong, psychometric evaluated tool and is a valuable measure for both scientists and clinicians to measure these two aspects in general and university hospitals. By using the PaCT-HCW, the opportunity is created to develop specific actions to improve patient participation.

Improving patient participation in a breast cancer survivorship program at a safety net hospital.

60 Background: To provide comprehensive services and meet Commission on Cancer (CoC) accreditation requirements, we developed and evaluated a customized breast cancer SCP template and delivery model. Objective: To implement and pilot test survivorship care plan (SCP) delivery for breast cancer survivors. Methods: Clinicians at a safety net hospital partnered with investigators at an academic institution to start a breast cancer survivorship care program. We developed an SCP template that is CoC-complaint and responsive to input gathered in 2 focus groups with breast cancer survivors (n = 12) and interviews with staff (n = 8). Oncologists and nurses identified and referred English-speaking women who had completed breast cancer treatment. Participants completed baseline measures prior to receiving individualized SCPs in a survivorship consultation visit with a dedicated APN. In response to high no-show rates, we expanded clinic scheduling to harmonize with participants' other medical appointments. Interim feasibility results for our ongoing study are presented here. Results: A total of 154 patients were screened to reach target enrollment (n= 80) within 20 months. Participant median age was 60 ± 11; 71% were African American, 14% Hispanic; 11% Non-Hispanic White and 92% had household incomes < $20,000. Average times were: 30 ± 13.4 minutes for abstracting patient clinical information in preparation for the survivorship visit; 25 ± 16 minutes for completing individual SCPs; 22±7.65 minutes to review / deliver the SCPs with patients. The difference in no-show rate between first 3-month recruitment period (clinic limited to one day/week) and next 17 months (clinic appointment expanded to accommodate patients' schedule) was statistically significant, p = 0.028. Conclusions: Tailoring SCP templates and delivery models to the needs of a safety net hospital aided the sustainability of a new survivorship clinic. Patient non-adherence to scheduled visits was significantly improved by expanding clinic hours. Significant clinician time was spent preparing SCPs and a level 4 visit (25 minutes) does not adequately reflect this effort. This study is funded by the American Cancer Society, Illinois Division (Grant# 254698).

The Concept of Patient Participation in Forensic Psychiatric Care: The Patient Perspective.

The importance of patient participation is advocated in medical treatment and nursing care and has been linked to increased quality of care, increased patient satisfaction, and treatment adherence. Still, patients in forensic psychiatric care often report being unhappy with their experienced level of participation. The concept of patient participation is complex and has several definitions, thus it is important to investigate it from different perspectives in different contexts. The aim of this study was to describe patients' perceptions of the concept of patient participation in forensic psychiatric care. A qualitative design with a phenomenographic approach was used, and interviews with 19 participants in a Swedish setting were completed. The participants described the concept of patient participation in forensic psychiatric care as follows: influence, to have good communication and to be involved; confidence, to have mutual trust and to trust the care; and own responsibility, to participate in activities and to take the initiative. On the basis of the results of this study, improved patient participation in forensic psychiatric care may be achieved with active communication, by building up and maintaining trust for professional competence and by encouraging patients' own responsibility. It is important that knowledge about patients' views of the concept of patient participation is included in the planning and improvement of forensic care.

Deepening Trochleoplasty With a Thick Osteochondral Flap for Patellar Instability

Background: In patients with patellar instability and severe trochlear dysplasia, trochleoplasty has become increasingly used as part of its surgical management. Hypothesis: Deepening trochleoplasty for severe dysplasia in patellofemoral instability improves function and increases sports participation. Study Design: Case series; Level of evidence, 4. Methods: Between 1995 and 2010, deepening trochleoplasty with a thick flap was performed in 90 patients (107 knees) with severe trochlear dysplasia. Data were collected prospectively preoperatively, at 6 weeks, and at 1-year follow-up. The patients were surveyed retrospectively to determine the clinical and functional outcomes including sports and exercise participation at a minimum of 2 years, with complete data available in 92%. Results: The average follow-up was 6 years (range, 2-19 years). The median Kujala score was 63 (interquartile range [IQR], 47-75) preoperatively, rising to 79 (IQR, 68-91) at 1-year follow-up and 84 (IQR, 73-92) at final follow-up (P < .05). Seventy-two percent were satisfied with their knee function at 1-year follow-up, rising to 83% at final follow-up (P < .0001). Sports and exercise participation increased from 36 patients (40%) preoperatively to 60 (67%) at final follow-up. The number of patients involved in competitions increased slightly from 10 (11%) to 11 (12%). Of those sports that involved twisting (eg, soccer, cricket, badminton), the number of patients participating increased from 16 (18%) to 22 (24%), whereas in nontwisting sports (eg, running, swimming, cycling), it increased from 24 (27%) to 47 (52%), of whom 12 (16%) used walking as exercise. Two patients who had undergone medial patellofemoral ligament (MPFL) reconstruction as the index operation needed the MPFL revised, and a further 8 patients needed MPFL reconstruction subsequently for instability symptoms and a mediolateral glide in extension of more than 2 quadrants’ displacement. At final follow-up, no patient had mechanical patellofemoral instability. Conclusion: Deepening trochleoplasty with a thick flap improves clinical and functional outcomes for patients with symptomatic patellar instability with severe trochlear dysplasia. These results improve over time and beyond 1-year clinical follow-up. However, trochleoplasty does not lead to a significant improvement in sports participation at a competitive level. It does improve patient participation in sports and exercise, principally in nontwisting sports activities.

Desensitizing Agent Reduces Dentin Hypersensitivity During Ultrasonic Scaling: A Pilot Study.

Dentin hypersensitivity can interfere with optimal periodontal care by dentists and patients. The pain associated with dentin hypersensitivity during ultrasonic scaling is intolerable for patient and interferes with the procedure, particularly during supportive periodontal therapy (SPT) for patients with gingival recession. This study proposed to evaluate the desensitizing effect of the oxalic acid agent on pain caused by dentin hypersensitivity during ultrasonic scaling. This study involved 12 patients who were incorporated in SPT program and complained of dentin hypersensitivity during ultrasonic scaling. We examined the availability of the oxalic acid agent to compare the degree of pain during ultrasonic scaling with or without the application of the dentin hypersensitivity agent. Evaluation of effects on dentin hypersensitivity was determined by a questionnaire and visual analog scale (VAS) pain scores after ultrasonic scaling. The statistical analysis was performed using the paired Student t-test and Spearman rank correlation coefficient. The desensitizing agent reduced the mean VAS pain score from 69.33 ± 16.02 at baseline to 26.08 ± 27.99 after application. The questionnaire revealed that >80% patients were satisfied and requested the application of the desensitizing agent for future ultrasonic scaling sessions. This study shows that the application of the oxalic acid agent considerably reduces pain associated with dentin hypersensitivity experienced during ultrasonic scaling. This pain control treatment may improve patient participation and treatment efficiency.

Paving the Road to Clinical Trial Participation: Removing Road Blocks and Directing Patients Toward Novel Therapies

Paving the Road to Clinical Trial Participation: Removing Road Blocks and Directing Patients Toward Novel Therapies

Communicating cancer treatment information using the Web: utilizing the patient's perspective in website development.

BackgroundOnline cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient’s perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.MethodsWe recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the ‘thinking aloud’ approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.ResultsStudy participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.ConclusionsOur findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.

Patient participation in patient safety and nursing input - a systematic review.

This systematic review aims to synthesise the existing research on how patients participate in patient safety initiatives. Ambiguities remain about how patients participate in routine measures designed to promote patient safety. Systematic review using integrative methods. Electronic databases were searched using keywords describing patient involvement, nursing input and patient safety initiatives to retrieve empirical research published between 2007 and 2013. Findings were synthesized using the theoretical domains of Vincent's framework for analysing risk and safety in clinical practice: "patient", "healthcare provider", "task", "work environment", "organisation & management". We identified 17 empirical research papers: four qualitative, one mixed-method and 12 quantitative designs. All 17 papers indicated that patients can participate in safety initiatives. Improving patient participation in patient safety necessitates considering the patient as a person, the nurse as healthcare provider, the task of participation and the clinical environment. Patients' knowledge, health conditions, beliefs and experiences influence their decisions to engage in patient safety initiatives. An important component of the management of long-term conditions is to ensure that patients have sufficient knowledge to participate. Healthcare providers may need further professional development in patient education and patient care management to promote patient involvement in patient safety, and ensure that patients understand that they are 'allowed' to inform nurses of adverse events or errors. A healthcare system characterised by patient-centredness and mutual acknowledgement will support patient participation in safety practices. Further research is required to improve international knowledge of patient participation in patient safety in different disciplines, contexts and cultures. Patients have a significant role to play in enhancing their own safety while receiving hospital care. This review offers a framework for clinicians to develop comprehensive practical guidelines to support patient involvement in patient safety.

Participation of the elderly population in clinical trials: barriers and solutions.

Despite the fact that cancer disproportionately affects the elderly, most participants of clinical cancer trials are relatively young. This misrepresentation greatly affects the oncology treatment of the elderly population (> 65 years of age). Few studies have attempted to identify the problems related to discrepancy based on age for clinical trial participation. A literature review was performed to identify barriers and solutions to enrollment of elderly persons for clinical cancer trials. Physician-related barriers include perception about treatment tolerance, drug metabolism, a lack of evidence for efficacy, and age bias. Lack of autonomy, concerns about quality of life and toxicities, accessibility to clinical trials, and logistical and financial difficulties are common patient-related barriers. Trial-related barriers include eligibility criteria based on performance status, organ dysfunction, and the presence of comorbidities. Solutions, such as improved communication, and coordinating logistical challenges may help overcome some of these challenges. Studies designed for the geriatric population could modify the perception and behavior of health care professionals and improve patient participation in clinical trials. Implementing some of these solutions and increased research may help overcome shortfalls in elderly enrollment, thus allowing for more effective treatment of older patients.

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...

Wikis to facilitate patient participation in developing information leaflets: first experiences

Objective: Although patients have gained a wealth of experienced based knowledge they are usually not involved in the development of patient information. We sought to determine the technical feasibility of wikis in generating dynamic patient information leaflets with participation from patients and healthcare professionals and identified barriers and facilitators for wiki use.Methods: An open wiki for patients receiving intrauterine inseminations and a closed wiki for patients receiving in vitro fertilization at one Dutch university clinic were used. Feasibility was assessed by analyzing logging data, content and users’ experiences and expectations. The latter were addressed by means of semi-structured interviews, which were also used to identify barriers and facilitators to wiki use.Results: Both patients and professionals worked on the information simultaneously, not hindered by time or location restrictions. The open IUI wiki was visited by 2957 and the closed IVF wiki by 424 users. About 28 barriers and 14 facilitators for using the wiki were identified.Conclusion: Wikis are promising tools to improve patient participation in the creation of patient information. Future projects should aim to increase active use of wikis by testing interventions based on the wide spectrum of barriers and should evaluate the quality of the content produced.

Improving patient participation in Parkinson‘s clinical trials: the experience of the Michael J Fox Foundation

Timely and efficient clinical trial recruitment is a chronic problem across diseases. The Michael J Fox Foundation for Parkinson‘s Research (MJFF) is a leading funder and sponsor of Parkinson‘s disease research. Solving recruitment challenges in Parkinson‘s disease is a priority for the MJFF and led to the development of an online tool – Fox Trial Finder – that connects participants to trials. As the sponsor of the Parkinson‘s Progression Markers Initiative, an observational biomarkers study, the MJFF developed first-hand expertise in recruitment planning and tactical implementation. Solving poor enrollment relies on all stakeholders involved – sponsors, funders, site personnel and patients – to work together to raise awareness of the problem and implement strategies to increase the number of people who participate in research.

Effects of improved patient participation in primary care on health-related outcomes: a systematic review

Background.In primary care, many consultations address symptom-based complaints. Recovery from these complaints seldom exceeds placebo effects. Patient participation, because of its supposed effects on trust and patient expectancies, is assumed to benefit patients’ recovery. While the idea is theoretically promising, it is still unclear what the effects of increased patient participation are on patient outcomes.Aim.To review the effects of controlled intervention studies aiming to improve patient participation in face-to-face primary care consultations on patient-oriented and/or disease-oriented outcomes.Methods.This study is a systematic review. A systematic search was undertaken for randomized controlled trials designed to measure the effects of interventions that aimed to improve adult patients’ participation in primary care visits. The CINAHL, Cochrane, EMBASE, PsycINFO and PubMed databases were searched.Results.Seven different trials fulfilled the inclusion criteria. Three of the studies were related to symptom-based complaints. Five studies measured patient-oriented outcomes, the primary outcome of interest for this review. All studies suffered from substantial bias. Studies varied widely in their aims, types of complaints/diseases, strength of the interventions and their outcomes. The effects on patient-oriented outcomes and disease-oriented outcomes were ambiguous.Conclusion.Little research has been performed on health outcomes of interventions aiming to increase patient participation in general practice visits among patients suffering from symptom-based complaints. The results still are non-conclusive. The quality of the trials has been weak, possibly due to the complexity of the concept. This weak quality may explain the lack of conclusive results. Proposals for future research designs are offered.

Older patients’ participation in team meetings—A phenomenological study from the nurses’ perspective

Although the importance of patient participation is acknowledged in today's healthcare, many challenges remain before patient participation can become an integral part of care provision. The ward round has traditionally been the forum for crucial decisions about patient care, but often with limited possibilities for patient participation. As part of the process of improving patient participation, the round in the present study has been replaced by a team meeting (TM) to which the patient has been invited. The aim of this study is to highlight nurses’ experiences of older patients’ participation in TMs. The research process was guided by the principles of phenomenological reflective life world research. Data were collected in a Swedish hospital, in a ward specializing in older patients. Nine nurses, who had invited and planned for a patient to participate in TMs and/or had experienced TMs in which patients participated, were interviewed. The essential meaning of patient participation in the TM, as experienced by the nurses, is that patient participation can be supported by a safe relationship in which the patient can make his or her voice heard. Participation is challenged by the patients’ vulnerability and by the subordinated role assigned to the patient. The essential meaning is further described by its constituents: “the need for a guide,” “patient participation challenged by structures,” and “creating space for the whole human being.” In conclusion, the nurse plays a core role in guiding the patient in an unfamiliar situation. The meaning of patient participation in the TM needs to be discussed by professionals so that the patient perspective is present.

Development of the patient approach and views toward healthcare communication (PAV-COM) measure among older adults

BackgroundThis study examines the psychometric properties of 9 items on the Patient Activation component of the Medicare Current Beneficiary Survey (MCBS) that assess how patients approach and communicate with their physicians. The MCBS is a nationally representative, cross-sectional survey of Medicare beneficiaries.MethodsWe analyzed MCBS data collected in 2002 and 2005 from 15,165 adults aged 65 and older. Exploratory factor analysis was conducted using maximum likelihood to estimate a polychoric correlation matrix on the 2002 data, and confirmatory factor analysis was performed using the 2005 data.ResultsExploratory factor analysis of the 2002 data showed a 2-factor solution: approach to interactions (5 items) and views about physician’s healthcare communication (6 items). Findings were confirmed using the 2005 data. Items were combined to form the Patient Approach and Views toward Healthcare Communication (PAV-COM) scale (range 1 to 100; Cronbach’s alpha of 0.75, and item-rest correlations between 0.33 and 0.54). Higher PAV-COM scores were associated with greater fulfillment of preventive health behaviors such as vaccinations and cancer screenings.ConclusionsThe PAV-COM measure is a valid tool for assessing patient approaches and views toward communication with physicians. This measure can be used to evaluate interventions to improve patient participation during healthcare encounters.

Interventions to improve patient participation in the treatment process for culturally and linguistically diverse people with cancer: A systematic review

Disparities in cancer outcomes for people from culturally and linguistically diverse (CALD) groups are well known. Improving CALD patients' active participation in treatment processes holds potential to improve outcomes, but little is known of effective strategies to facilitate this. This systematic review investigated interventions to improve three aspects of participation in cancer care among CALD groups, namely involvement in decision-making, communication with health providers and treatment adherence. A comprehensive search of electronic bibliographic databases was conducted to identify intervention studies that reported outcomes relevant to patient participation for CALD groups. Two reviewers independently critically appraised the studies and abstracted data. Of 10,278 potential articles, seven met the inclusion criteria, including three randomized controlled, three non-randomized and one mixed-method experimental studies. Interventions included the use of patient navigators, videos and decision aids. The impact on patient participation was varied. The effect of a decision aid and patient navigator interventions on communication with health providers was positive. While the use of a decisions aid successfully facilitated shared decision-making and patients' perception of treatment adherence, the use of patient navigators was ineffective. A computer support system was found to improve general patient participation; however little clarification of what this involved was provided. This systematic review identified few rigorous evaluations of interventions to improve treatment participation for CALD people with cancer, highlighting the lack of a robust evidence base to improve this crucial aspect of care. The development and evaluation of interventions for diverse populations remains a priority.

888 Mailed Invitations to Be Screened for Colorectal Cancer Improve Uptake in Population Based Screening Program

Introduction: A central tenet of organized cancer screening programs is that all members of the target population be invited to be screened. While mailed invitations for colorectal cancer (CRC) screening have been shown to be effective in randomized controlled trials, to date, their effectiveness has not been reported in population-based studies. The aim of this study is to evaluate the effectiveness of mailed invitations for CRC screening in a populationbased CRC screening program. Methods: In 2008, Ontario launched its organized provincewide CRC screening program, ColonCancerCheck (CCC). In November 2009, CCC conducted a technical evaluation (“the Pilot”) of large scale mailed invitations asking patients to visit their family physician to arrange CRC screening. The Pilot comprised 102 family physicians and all their associated eligible patients (i.e., aged 50-74 years, due for screening, no prior CRC). In the current study, we linked the records of the Pilot patients to provincial health administrative records. Patient and physician factors associated with response to the mailed invitation were identified using logistic regression adjusting for clustering of patients within physicians. Using propensity scores to match in a 1:1 fashion, we then selected a control group of eligible patients from family physicians who did not participate in the Pilot. CRC screening uptake was compared between Pilot patients and matched controls using McNemar's test. Results: There were 11,302 eligible patients in the Pilot cohort. Median age (interquartile range) was 58 years (53-64), 5,853 (52%) were female and 1,548 (14%) completed an FOBT previously (from 2 to 5 years prior). 2503 (22%) completed an FOBT within 6 months of the mailed invitation. Factors significantly associated with uptake of FOBT included older patient age (70-74 vs. 50-59 years old: OR 1.6, 95% CI: 1.3 2.0), greater patient co-morbidity (greatest vs. no co-morbidity: OR 1.6, 95% CI: 1.3 2.0), having a female physician (OR 1.3, 95% CI: 1.04 1. 6), lack of intercurrent hospital admission (OR 3.5, 95% CI: 2.2 5.6) and prior FOBT(OR 2.8, 95% CI: 2.5 3.3). In the matched analysis, Pilot patients were more likely to complete an FOBT within 6 months of mailed invitation than matched controls (22% vs. 7%, p<0.0001). Benefit was maintained when the definition of uptake of CRC screening included FOBT or colonoscopy within 6 months of invitation (25% vs. 10%, p <0.0001). Seven invitations were mailed for each additional person participating in screening. Conclusion: Mailed invitations improved the uptake of CRC screening in this provincial population-based CRC screening program. Organized CRC screening programsmay wish to use mailed invitations to improve patient participation.

Evaluating the effectiveness of GP endorsement on increasing participation in the NHS Bowel Cancer Screening Programme in England: study protocol for a randomized controlled trial

BackgroundThe success and cost-effectiveness of bowel cancer screening depends on achieving and maintaining high screening uptake rates. The involvement of GPs in screening has been found to improve patient compliance. Therefore, the endorsement of screening by GPs may increase uptake rates amongst non-responders.Methods/DesignA two-armed randomised controlled trial will evaluate the effectiveness of a GP endorsed reminder in improving patient participation in the NHS Bowel Cancer Screening Programme (NHSBCSP). Up to 30 general practices in the West Midlands with a screening uptake rate of less than 50% will be recruited and patients identified from the patient lists of these practices. Eligible patients will be those aged 60 to 74, who have previously been invited to participate in bowel screening but who have been recorded by the Midlands and North West Bowel Cancer Screening Hub as non-responders. Approximately 4,380 people will be randomised in equal numbers to either the intervention (GP letter and duplicate FOBt kit) or control (no additional contact) arms of the trial.The primary outcome measure will be the difference in the uptake rate of FOBt screening for bowel cancer between the intervention and control groups at 13 weeks after the GP endorsed reminder and duplicate FOBt kit are sent. Secondary outcome measures will be subgroup analyses of uptake according to gender, age and deprivation quartile, and the validation of methods for collecting GP, NHSBCSP and patient costs associated with the intervention. Qualitative work (30 to 40 semi-structured interviews) will be undertaken with individuals in the intervention arm who return a FOBt kit, to investigate the relative importance of the duplicate FOBt kit, reminder to participate, and GP endorsement of that reminder in contributing to individuals' decisions to participate in screening.DiscussionImplementing feasible, acceptable and cost-effective strategies to improve screening uptake amongst non-responders to invitations to participate is fundamentally important for the success of screening programmes. If this feasibility study demonstrates a significant increase in uptake of FOBt screening in individuals receiving the intervention, a definitive, appropriately powered future trial will be designed.Trial registration numberISRCTN: ISRCTN86784060

Outcomes of a Cancer Clinical Trial Matching Service

The American Cancer Society (ACS) and Coalition of Cancer Cooperative Groups (CCCG) provide a clinical trial (CT) information/matching/eligibility service (Clinical Trials Matching Service [CTMS]). Patients' demographic and clinical data, enrollment status, and self-reported barriers to CT participation were analyzed to assess enrollment rates and determinants of enrollment. During 3 years beginning October 1, 2007, the CTMS served 6,903 patients via the ACS call center. Among the 1,987 patients with follow-up information on enrollment, 219 (11.0%) enrolled in a CT; 48 of these 219 enrollees chose a CT they found via the CTMS. Patients were less likely to enroll if they had poor ECOG performance status (P = 0.032); were African American (P = 0.0003), were uninsured or had Medicaid coverage (P = 0.024), or had lower stage disease (P = 0.018). Enrollment varied by trial type/cancer site/system (P = .026). Several barriers significantly predicted nonenrollment. Broader availability of a CTMS might help improve patient participation in cancer clinical trials.

The impact of an intervention to improve patient participation in a surgical care unit: A quasi-experimental study

BackgroundOrganizational changes in surgical care are requiring patients to become more responsible for their own care, both before and after surgery, and also during recovery. Involving patients in their care is vital to improving quality of care and patient safety. ObjectiveThe aim of this study was to investigate the impact of the ‘Tell-us’ card on patients’ perceptions of quality of care, with a specific focus on patient participation. Another aim was to evaluate the use of the Tell-us card from the patients’ perspective. DesignA quasi-experimental design with an intervention group and control groups was used. The patient's self-written Tell-us card was introduced as the intervention. SettingThe study was conducted in two surgical care units at a Swedish university hospital. ParticipantsA consecutive sample of patients admitted from the waiting list and from the emergency department was included (n=310). The inclusion criteria were surgical patients with a hospital stay of at least one day. Patients who were younger than 18 years, not able to speak or write in Swedish, or unable or unwilling to give informed consent to participate were excluded. MethodsQuality of care was assessed using the questionnaire ‘Quality from the Patient's Perspective’. The patients included in the intervention group were asked to write what was most important for them during the day or just before discharge on patient-written Tell-us cards. ResultsThe use of the Tell-us card resulted in significant improvements (5 out of 17 items) in patients’ abilities to participate in decisions about their nursing and medical care. The patients found the Tell-us card more useful in their interaction with registered nurses and assistant nurses than with physicians. ConclusionsThe use of the Tell-us card improved patients’ participation in some areas of nursing and medical care in the surgical care units. The Tell-us card is an uncomplicated and inexpensive tool that could be an important step towards improved patient participation in the surgical care unit. More research is needed to evaluate the use of the Tell-us card in different hospital units and over a longer period of time.