The use of patient experience survey data by out-of-hours primary care services: a qualitative interview study

Background English National Quality Requirements mandate out-of-hours primary care services to routinely audit patient experience, but do not state how it should be done.

Objectives We explored how providers collect patient feedback data and use it to inform service provision. We also explored staff views on the utility of out-of-hours questions from the English General Practice Patient Survey (GPPS).

Methods A qualitative study was conducted with 31 staff (comprising service managers, general practitioners and administrators) from 11 out-of-hours primary care providers in England, UK. Staff responsible for patient experience audits within their service were sampled and data collected via face-to-face semistructured interviews.

Results Although most providers regularly audited their patients’ experiences by using patient surveys, many participants expressed a strong preference for additional qualitative feedback. Staff provided examples of small changes to service delivery resulting from patient feedback, but service-wide changes were not instigated. Perceptions that patients lacked sufficient understanding of the urgent care system in which out-of-hours primary care services operate were common and a barrier to using feedback to enable change. Participants recognised the value of using patient experience feedback to benchmark services, but perceived weaknesses in the out-of-hours items from the GPPS led them to question the validity of using these data for benchmarking in its current form.

Conclusions The lack of clarity around how out-of-hours providers should audit patient experience hinders the utility of the National Quality Requirements. Although surveys were common, patient feedback data had only a limited role in service change. Data derived from the GPPS may be used to benchmark service providers, but refinement of the out-of-hours items is needed.

Understanding the Patient Experience Through the Power of Film: a Mixed Method Qualitative Research Project

Film is a highly attractive teaching instrument for the study of different terminal diseases, exploring bioethics (Beauchamp and Childress, 2009) and is a preferred medium over traditional lectures (Edmunds, 2013) to provide realistic examples for adult learners. It can tap into ethical issues; facilitate decision-making; and examine underlying issues such as euthanasia; assisted suicide; and professional responsibility. Contrast this with standard means of teaching, such as scenarios- although a useful pedagogic tool, these are limited because students must imagine the clinical scenario. Film can fill that imaginative gap (Volandes, 2007). It can be utilised as an active teaching strategy for a variety of topics in nursing (Edmunds, 2013) providing a unique way to promote active learning in nursing education (Herrman, 2006). The objectives of the study, aim to help pre registration student nurses from each year of study to engage with their role as health care professionals; provide open discussion and debate on how they view the personal experience of illness/disease/disability/death and to reflect on their role and provision of patient care. It is delivered in 3 tiers to provide a range of data for thematic analysis; 1) Film screening followed by a ‘5 minute reaction’ discussion and post screening questionnaire; 2) Pre screening guided activities for reflection and discussion; 3) Focus groups. This project meets identified aims from the UK Professional Standards Framework (UKPSF) by fostering creative and innovative approaches to teaching and learning; facilitating and supporting the design and delivery of continuing education development programmes and activities; and demonstrates professionalism that staff and institutions bring to teaching. Preliminary feedback and themes will be presented.

A novel blood-sparing agent in cardiac surgery? First in-patient experience with the synthetic serine protease inhibitor MDCO-2010: a phase II, randomized, double-blind, placebo-controlled study in patients undergoing coronary artery bypass grafting with cardiopulmonary bypass

BACKGROUND Antifibrinolytics have been used for 2 decades to reduce bleeding in cardiac surgery. MDCO-2010 is a novel, synthetic, serine protease inhibitor. We describe the first experience with this drug in patients. METHODS In this phase II, double-blind, placebo-controlled study, 32 patients undergoing isolated primary coronary artery bypass grafting with cardiopulmonary bypass were randomly assigned to 1 of 5 increasing dosage groups of MDCO-2010. The primary aim was to evaluate pharmacokinetics (PK) with assessment of plasmatic concentrations of the drug, short-term safety, and tolerance of MDCO-2010. Secondary end points were influence on coagulation, chest tube drainage, and transfusion requirements. RESULTS PK analysis showed linear dosage-proportional correlation between MDCO-2010 infusion rate and PK parameters. Blood loss was significantly reduced in the 3 highest dosage groups compared with control (P = 0.002, 0.004 and 0.011, respectively). The incidence of allogeneic blood product transfusions was lower with MDCO-2010 4/24 (17%) vs 4/8 (50%) in the control group. MDCO-2010 exhibited dosage-dependent antifibrinolytic effects through suppression of D-dimer generation and inhibition of tissue plasminogen activator-induced lysis in ROTEM analysis as well as anticoagulant effects demonstrated by prolongation of activated clotting time and activated partial thromboplastin time. No systematic differences in markers of end organ function were observed among treatment groups. Three patients in the MDCO-2010 groups experienced serious adverse events. One patient experienced intraoperative thrombosis of venous grafts considered possibly related to the study drug. No reexploration for mediastinal bleeding was required, and there were no deaths. CONCLUSIONS This first-in-patient study demonstrated dosage-proportional PK for MDCO-2010 and reduction of chest tube drainage and transfusions in patients undergoing primary coronary artery bypass grafting. Antifibrinolytic and anticoagulant effects were demonstrated using various markers of coagulation. MDCO-2010 was well tolerated and showed an acceptable initial safety profile. Larger multi-institutional studies are warranted to further investigate the safety and efficacy of this compound.

Narrative Therapy and Stigma Management: Restorying the Patient Experience of Being Told, “You have MS

The purpose of this investigation was to determine if the way patients are informed of the diagnosis of multiple sclerosis (MS) affects their feelings about themselves as people with MS. Building on illness narrative, I hoped to examine how patients “storied” their experience of being informed of the diagnosis of MS and whether this “storying” had a lasting impact on their self-concept. The alternative would be that no connection exists between how a neurologist informs a patient of the diagnosis and how a person makes sense of their diagnosis and life with MS. Due to study limitations (e.g., small sample size, threat of response bias), the results are unclear about whether the way in which the news is broken has a lasting effect on patients' perceptions. However, review of the literature and patient responses indicate that there is a need for psychological intervention when patients are diagnosed with MS.

Understanding the Patient Experience Through the Power of Film: a Mixed Method Qualitative Research Study

Background For decades film has proved to be a powerful form of communication. Whether produced as entertainment, art or documentary, films have the capacity to inform and move us. Films are a highly attractive teaching instrument and an appropriate teaching method in health education. It is a valuable tool for studying situations most transcendental to human beings such as pain, disease and death. Objectives The objectives were to determine how this helps students engage with their role as health care professionals; to determine how they view the personal experience of illness, disease, disability or death; and to determine how this may impact upon their provision of patient care. Design, Setting and Participants The project was underpinned by the film selection determined by considerate review, intensive scrutiny, contemplation and discourse by the research team. 7 films were selected, ranging from animation; foreign, documentary, biopic and Hollywood drama. Each film was shown discretely, in an acoustic lecture theatre projected onto a large screen to pre-registration student nurses (adult, child and mental health) across each year of study from different cohorts (n = 49). Method A mixed qualitative method approach consisted of audio-recorded 5-minute reactions post film screening; coded questionnaires; and focus group. Findings were drawn from the impact of the films through thematic analysis of data sets and subjective text condensation categorised as: new insights looking through patient eyes; evoking emotion in student nurses; spiritual care; going to the moves to learn about the patient experience; self discovery through films; using films to link theory to practice. Results Deeper learning through film as a powerful medium was identified in meeting the objectives of the study. Integration of film into pre registration curriculum, pedagogy, teaching and learning is recommended. Conclusion The teaching potential of film stems from the visual process linked to human emotion and experience. Its impact has the power to not only help in learning the values that underpin nursing, but also for respecting the patient experience of disease, disability, death and its reality.

Patient participation in postoperative care activities in patients undergoing total knee replacement surgery: multimedia intervention for managing patient experience (MIME). Study protocol for a cluster randomised crossover trial

BACKGROUND: Patient participation is an important indicator of quality care. Currently, there is little evidence to support the belief that participation in care is possible for patients during the acute postoperative period. Previous work indicates that there is very little opportunity for patients to participate in care in the acute context. Patients require both capability, in terms of having the required knowledge and understanding of how they can be involved in their care, and the opportunity, facilitated by clinicians, to engage in their acute postoperative care. This cluster randomised crossover trial aims to test whether a multimedia intervention improves patient participation in the acute postoperative context, as determined by pain intensity and recovery outcomes.

METHODS/DESIGN: A total of 240 patients admitted for primary total knee replacement surgery will be invited to participate in a cluster randomised, crossover trial and concurrent process evaluation in at least two wards at a major non-profit private hospital in Melbourne, Australia. Patients admitted to the intervention ward will receive the multimedia intervention daily from Day 1 to Day 5 (or day of discharge, if prior). The intervention will be delivered by nurses via an iPad™, comprising information on the goals of care for each day following surgery. Patients admitted to the control ward will receive usual care as determined by care pathways currently in use across the organization. The primary endpoint is the "worst pain experienced in the past 24 h" on Day 3 following TKR surgery. Pain intensity will be measured using the numerical rating scale. Secondary outcomes are interference of pain on activities of daily living, length of stay in hospital, function and pain following TKR surgery, overall satisfaction with hospitalisation, postoperative complications and hospital readmission.

DISCUSSION: The results of this study will contribute to our understanding of the effectiveness of interventions that provide knowledge and opportunity for patient participation during postoperative in-hospital care in actually increasing participation, and the impact of participation on patient outcomes. The results of this study will also provide data about the barriers and enablers to participation in the acute care context.

The patient experience of a peripherally inserted central catheter (PICC): A qualitative descriptive study.

UNLABELLED: Abstract Aim: To investigate the patient experience of Peripherally Inserted Central Catheter (PICC) insertion, the significance of arm choice and the impact of the device on activities of daily living. BACKGROUND: Arm choice for PICC insertion is often determined by PICC nurses with little input from consumers. There are few studies that have investigated the patient experience of living with a PICC and none that have examined the impact of arm choice from the consumer's perspective. METHOD: Participants were recruited in a hospital whilst they waited for PICC insertion. A purposeful sampling approach was used to select participants based on diagnosis types. Semi-structured telephone interviews were conducted November 2012-August 2013. Transcripts of the interviews were analysed using thematic analysis. FINDINGS: Ten participants were interviewed. Four themes were identified: (i) apprehension/adaptation/acceptance, (ii) impact of treatment, (iii) asking questions (trusting doctors) and (iv) freedom. Although initially apprehensive, participants adapted to the PICC and came to accept that the device allowed convenient access for treatment. This allowed them the freedom to receive treatment at home. The use of the dominant or non-dominant arm for PICC insertion had marginal impact on activities of daily living for participants. Auxiliary factors such as the infusion pump had a significant impact for those who received outpatient treatment. For those participants who did not understand the procedure, many did not seek clarification and trusted medical and nursing staff to make decisions for them. CONCLUSION: Nurses should involve consumers in clinical decision-making and provide individualised information and support that facilitates adaptation for patients living with a PICC.

Comparing experience of diabetes care with chronic illness care in the primary care clinic using the Patient Assessment of Chronic Illness Care (PACIC)

Purpose. The overall purpose of the study was to evaluate the patient experience relevant to the Chronic Care Model as measured by the PACIC. Chronic illness care of patients with diabetes was compared to those with other chronic illnesses. In addition, chronic illness care of Hispanics was compared to those of other race/ethnicity. ^ Methods. The setting of this study was 20 primary care practices located in San Antonio, TX. The subjects in this study were consecutive adult patients age >18 yrs. Data was collected via a survey (PACIC) administered to 40-60 consecutive adult patients in each primary care clinic who presented for a scheduled appointment. ^ Results. Patient experience of the Chronic Care Model is different among those with diabetes than those with other chronic diseases: those with diabetes report a higher PACIC score. (P = 0.012) Although Hispanic patients report a higher PACIC score, patient experience of the Chronic Care Model among Hispanic patients is not significantly different than that of patients of other race/ethnicity regardless of chronic disease. (P = 0.053) After controlling for the patient characteristics of age, education, health status, and race/ethnicity, the diabetes status of the patient remains significantly associated with the outcome, the PACIC score. (P = 0.033) ^ Conclusions. Diabetes is associated with a greater experience of the Chronic Care model. Contributing factors to diabetes patients’ greater experience of the Chronic Care Model include the greater heath care use and higher self-care needs unique to individuals with diabetes. Special consideration must be given to the specific needs diabetic patients to ensure effective interventions, higher patient education, greater patient compliance, and lower health care costs. ^

Part 2. Chemical and physical restraints in the management of mechanically ventilated patients in the ICU: A patient perspective

An important goal of the care for the mechanically ventilated patient is to minimize patient discomfort and anxiety. This is partly achieved by frequent use of chemical and physical restraints. The majority of patients in intensive care will receive some form of sedation. The goal and use of sedation has changed considerably over the past few decades with literature evidencing trends toward overall lighter sedation levels and daily interruption of sedation. Conversely, the use of physical restraint for the ventilated patient in ICU differs considerably between nations and continents. A large portion of the literature on the use of physical restraint is from general hospital wards and residential homes, and not from the ICU environment. Recent literature suggests minimal use of physical restraint in the ICU, and that reduction programmes have been initiated. However, very few papers illuminate the patient's experience of physical and chemical restraints as a treatment strategy. In Part 1 of this two-part review, the evidence on chemical and physical restraints was explored with specific focus on definitions of terms, unplanned extubation, agitation, delirium as well as the impact of nurse–patient ratios in the ICU on these issues. This paper, Part 2, examines the evidence related to chemical and physical restraints from the mechanically ventilated patient's perspective.

Under the carpet : the politics and trauma of patient harm

Few studies have investigated iatrogenic outcomes from the viewpoint of patient experience. To address this anomaly, the broad aim of this research is to explore the lived experience of patient harm. Patient harm is defined as major harm to the patient, either psychosocial or physical in nature, resulting from any aspect of health care. Utilising the method of Consensual Qualitative Research (CQR), in-depth interviews are conducted with twenty-four volunteer research participants who self-report having been severely harmed by an invasive medical procedure. A standardised measure of emotional distress, the Impact of Event Scale (IES), is additionally employed for purposes of triangulation. Thematic analysis of transcript data indicate numerous findings including: (i) difficulties regarding patients‘ prior understanding of risks involved with their medical procedure; (ii) the problematic response of the health system post-procedure; (iii) multiple adverse effects upon life functioning; (iv) limited recourse options for patients; and (v) the approach desired in terms of how patient harm should be systemically handled. In addition, IES results indicate a clinically significant level of distress in the sample as a whole. To discuss findings, a cross-disciplinary approach is adopted that draws upon sociology, medicine, medical anthropology, psychology, philosophy, history, ethics, law, and political theory. Furthermore, an overall explanatory framework is proposed in terms of the master themes of power and trauma. In terms of the theme of power, a postmodernist analysis explores the politics of patient harm, particularly the dynamics surrounding the politics of knowledge (e.g., notions of subjective versus objective knowledge, informed consent, and open disclosure). This analysis suggests that patient care is not the prime function of the health system, which appears more focussed upon serving the interests of those in the upper levels of its hierarchy. In terms of the master theme of trauma, current understandings of posttraumatic stress disorder (PTSD) are critiqued, and based on data from this research as well as the international literature, a new model of trauma is proposed. This model is based upon the principle of homeostasis observed in biology, whereby within every cell or organism a state of equilibrium is sought and maintained. The proposed model identifies several bio-psychosocial markers of trauma across its three main phases. These trauma markers include: (i) a profound sense of loss; (ii) a lack of perceived control; (iii) passive trauma processing responses; (iv) an identity crisis; (v) a quest to fully understand the trauma event; (vi) a need for social validation of the traumatic experience; and (vii) posttraumatic adaption with the possibility of positive change. To further explore the master themes of power and trauma, a natural group interview is carried out at a meeting of a patient support group for arachnoiditis. Observations at this meeting and members‘ stories in general support the homeostatic model of trauma, particularly the quest to find answers in the face of distressing experience, as well as the need for social recognition of that experience. In addition, the sociopolitical response to arachnoiditis highlights how public domains of knowledge are largely constructed and controlled by vested interests. Implications of the data overall are discussed in terms of a cultural revolution being needed in health care to position core values around a prime focus upon patients as human beings.

Ethnic variations in the experiences of mental health service users in England: results of a national patient survey programme

Background: Minority ethnic groups in the UK are reported to have a poor experience of mental health services, but comparative information is scarce. Aims: To examine ethnic differences in patients’ experience of community mental health services. Method: Trusts providing mental health services in England conducted surveys in 2004 and 2005 of users of community mental health services. Multiple regression was used to examine ethnic differences in responses. Results: About 27 000 patients responded to each of the surveys, of whom 10% were of minority ethnic origin. In the 2004 survey, age, living alone, the 2004 survey, age, living alone, detention and hospital admissions were stronger predictors of patient experience than ethnicity. Self-reported mental health status had the strongest explanatory effect. In the 2005 survey, the main negative differences relative to the White British were for Asians. Conclusions: Ethnicity had a smaller effect on patient experience than other variables. Relative to the White British, the Black group did not report negative experiences whereas the Asian group were most likely to respond negatively. However, there is a need for improvements in services for minority ethnic groups, including access to talking therapies and better recording of ethnicity.