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.

Pilot Study of clinician attitudes to insulin pump therapy: international differences and the need for a greater understanding of the patient perspective

OBJECTIVES: To identify and survey health care professionals (HCPs) attitudes to insulin pump therapy (CSII).

METHODS: Eight specialists were interviewed to explore the attitudes and beliefs about CSII. Responses were analysed thematically and used to inform the design of a new 22-item questionnaire: the Attitudes to Pump Therapy (APT) Survey. The APT was pilottested among 95 HCPs (54% male; 75.5% diabetologists/DSNs, 13.8% general practitioners) at the International Diabetes Federation (IDF) conference, 2006. Results were analysed using non-parametric statistics with bonferroni correction.

RESULTS: Analyses of interview data identified 9 themes: biomedical, perceived control of care/diabetes, technology, quality of life, financial resources, training, education & support, suitability, and evidence-base. Items were designed to reflect these themes with responses scored on a 5-point Likert scale (strongly agree—strongly disagree). No statistically significant differences
were found by gender, HCP speciality, country (and continent) of origin or proportion of patients using CSII. Most notable differences were found in relation to gross domestic product (GDP) and the potential for pump therapy to achieve tight blood glucose control (lower GDP = more agreement: p = 0.001), and result in diabetic ketoacidosis (DKA) (lower GDP = less agreement: p < 0.005). Ranked mean scores showed a split between biomedical/clinical items (N = 11) and items concerned with patient experience (N = 11). Attitudes about biomedical/clinical issues were generally clear (i.e. for 7/11 items, the mean score was “agree”) but less decisive about patient experience (i.e. for 8/11 items, the mean score was “neither agree nor disagree”).

CONCLUSION: Few subgroup differences existed, but those that did may be explained by lack of access to treatment (directly corresponding to GDP). Clinicians’ were generally clear in their attitudes regarding biomedical aspects but less so regarding patient experience. Research focusing on patient-reported outcomes is likely to offer clinicians a greater understanding of the patients’ perspective of insulin pump therapy.

Patient-reported outcomes in trials of incretin-based therapies in patients with type 2 diabetes mellitus

Incretin-based therapies have a glucose-dependent mode of action that results in excellent glucose-lowering efficacy with very low risk of hypoglycaemia, and weight neutrality [dipeptidyl peptidase-4 (DPP-4) inhibitors] or weight loss [glucagon-like peptide-1 (GLP-1) receptor agonists], in people with type 2 diabetes mellitus (T2DM). Patient-reported outcomes (PROs) complement physician evaluations of efficacy and tolerability and offer insights into the subjective experience of using modern diabetes treatments. We conducted a systematic search of clinical trials of the GLP-1 receptor agonists liraglutide, exenatide and long-acting exenatide, one of which included the oral DPP-4 inhibitor sitagliptin as a comparator. No other PRO data for DPP-4 inhibitors were identified. This review summarizes PRO data from eight clinical trials, the majority of which used the Diabetes Treatment Satisfaction Questionnaire (DTSQ) and/or Impact of Weight on Quality of Life-Lite (IWQOL-Lite) to evaluate patient experience. People with T2DM were highly satisfied with modern incretin-based therapies compared with traditional therapies. Treatment satisfaction (including perceptions of convenience and flexibility) was high and generally higher with GLP-1 agonists in association with their greater glucose-lowering efficacy and tendency to facilitate weight loss. Weight-related quality of life (QoL) also improved in people using incretin therapies. The glycaemic improvements achieved with GLP-1 receptor agonists, coupled with the low incidence of hypoglycaemia and ability to cause weight loss, seemed to offset potential concern about injections. It is plausible that superior patient-reported benefits found in clinical trials may translate into improved, clinically meaningful, long-term outcomes through increased treatment acceptability. Long-term, prospective data are needed to ascertain whether this is the case in practice.

Patient and carer identified factors which contribute to safety incidents in primary care: a qualitative study

BACKGROUND: Patients can have an important role in reducing harm in primary-care settings. Learning from patient experience and feedback could improve patient safety. Evidence that captures patients' views of the various contributory factors to creating safe primary care is largely absent. The aim of this study was to address this evidence gap. METHODS: Four focus groups and eight semistructured interviews were conducted with 34 patients and carers from south-east Australia. Participants were asked to describe their experiences of primary care. Audio recordings were transcribed verbatim and specific factors that contribute to safety incidents were identified in the analysis using the Yorkshire Contributory Factors Framework (YCFF). Other factors emerging from the data were also ascertained and added to the analytical framework. RESULTS: Thirteen factors that contribute to safety incidents in primary care were ascertained. Five unique factors for the primary-care setting were discovered in conjunction with eight factors present in the YCFF from hospital settings. The five unique primary care contributing factors to safety incidents represented a range of levels within the primary-care system from local working conditions to the upstream organisational level and the external policy context. The 13 factors included communication, access, patient factors, external policy context, dignity and respect, primary-secondary interface, continuity of care, task performance, task characteristics, time in the consultation, safety culture, team factors and the physical environment. DISCUSSION: Patient and carer feedback of this type could help primary-care professionals better understand and identify potential safety concerns and make appropriate service improvements. The comprehensive range of factors identified provides the groundwork for developing tools that systematically capture the multiple contributory factors to patient safety.

User experience and care integration in transitional care for older people from hospital to home: a meta-synthesis

This meta-synthesis aimed to improve understanding of user experience of older people, carers, and health providers; and care integration in the care of older people transitioning from hospital to home. Following our systematic search, we identified and synthesized 20 studies, and constructed a comprehensive framework. We derived four themes: (1) 'Who is taking care of what? Trying to work together"; (2) 'Falling short of the mark'; (3) 'A proper discharge'; and (4) 'You adjust somehow.' The themes that emerged from the studies reflected users' experience of discharge and transitional care as a social process of 'negotiation and navigation of independence (older people/carers), or dependence (health providers).' Users engaged in negotiation and navigation through the interrogative strategies of questioning, discussion, information provision, information seeking, assessment, and translation. The derived themes reflected care integration that facilitated, or a lack of care integration that constrained, users' experiences of negotiation and navigation of independence/dependence.

Responding to the ageing profile of emergency department patients

Background
Older people with acute superimposed on chronic health problems are becoming a core aspect of emergency department (ED) caseload. This project explored the ED experience from the perspective of older patients and their carers.

Method
A convenience sample of thirty participants was recruited across three participating EDs: tw o metropolitan and one regional. The project utilised two approaches to data collection: 1) an observation approach where a project officer observed participants from the time of ED presentation until discharge, or for up to six hours; and 2) a subsequent interview was conducted with the participant and their carer within a week of the ED presentation. Data from both sources were integrated, and independently thematically analysed by two members of the team.

Results
Thirty participants aged over 65 were recruited. Their average age was 77.1 (sd=6.7) years, 59% w ere female, and 74% were triage category 1- 3 (indicating moderate/high acuity). Participants spent on average 7 hours 47 minutes in the ED, with 50% discharged home, 43% admitted to general wards or MAPU, and 7% discharged to residential care/hospice. Key themes in the factors influencing the patient experience and examples of quality care were identified, along with opportunities to improve the capacity for EDs to be “older person friendly”, and “person-centred.” Challenges include improving the effectiveness of communication between staff and patients/carers (including issues around people from culturally and linguistically diverse backgrounds), availability of allied health professionals to assist with discharge planning, and a tendency for older people not to seek ED care until the health problem was severe. Patient exemplars highlight key themes.

Discussion and implications
Results of the project highlight positive aspects of emergency department care for older people and inform targets for improvement strategies. These can be used to drive ongoing improvements in care for older people presenting to EDs.

What's wrong with me? Concerns about online medical self-diagnosis

Self-service technologies (SSTs) are becoming increasingly commonplace in healthcare. However, research on the customer (patient) experience in this context is rare. This paper focuses on online medical self-diagnosis, a type of e-health service. This SST can provide customers with benefits such as greater convenience and control, yet we argue that this form of do-it-yourself doctoring also raises concerns for customers. This paper contributes to the service domain by presenting research propositions on the potential negative implications for customers, and their antecedents, of online medical self-diagnosis. We propose that this form of self-diagnosis is related to harms, such as customer anxiety, customer willingness to bypass healthcare professionals, and self-medication. Future research opportunities are discussed, along with implications for policy and practice.

Content validity of visual analog scales to assess symptom severity of acute angioedema attacks in adults with hereditary angioedema : an interview study

Background: Hereditary angioedema (HAE) is a rare, debilitating, potentially life-threatening condition characterized by recurrent acute attacks of edema of the skin, face/upper airway, and gastrointestinal and urogenital tracts. During a laryngeal attack, people with HAE may be at risk of suffocation, while other attacks are often associated with intense pain, disfigurement, disability, and/or vomiting. The intensity of some symptoms is known only to the person experiencing them. Thus, interview studies are needed to explore such experience and patient-reported outcome measures (PROMs) are required for systematic assessment of symptoms in the clinical setting and in clinical trials of treatments for acute HAE attacks.

Objective: The aim of this interview study was to assess the content validity and suitability of four visual analog scale (VAS) instruments for use in clinical studies. The VAS instruments were designed to assess symptoms at abdominal, oro-facial-pharyngeal-laryngeal, peripheral, and urogenital attack locations. This is the first known study to report qualitative data about the patient's experience of the rare disorder, HAE.

Methods: Semi-structured exploratory and cognitive debriefing interviews were conducted with 27 adults with a confirmed clinical/laboratory diagnosis of HAE (baseline plasma level of functional plasma protein C1 esterase inhibitor [C1INH] <50% of normal without evidence for acquired angioedema). There were 17 participants from the US and 10 from Italy, with mean age 42.5 (SD 14.5) years, range 18–72 years, mean HAE duration 21.3 (SD 14.1) years, range 1–45 years, 67% female, and 44% VAS-naïve. Experience of acute angioedema attacks was first explored, noting spontaneous mentions by participants of HAE symptomatology. Cognitive debriefing of the VAS instruments was undertaken to assess the suitability, comprehensibility, and relevance of the VAS items. Asymptomatic participants completed the VAS instruments relevant to their angioedema experience, reporting as if they were experiencing an acute angioedema attack at the time. Interviews were conducted in the clinic setting in the US and Italy over an 8-month period.

Results: Participants mentioned spontaneously almost all aspects of acute angioedema attacks covered by the four VAS instruments, thus providing strong support for inclusion of nearly all VAS items, with no important symptoms missing. Predominant symptoms found to be associated with acute angioedema attacks were edema and pain, and there was evidence of varying degrees of disruption to everyday activities supporting the inclusion of an overall severity item reflecting the disabling effects of HAE symptoms. VAS item wording was understood by participants.

Conclusion: This interview study explored and reported the patient experience of HAE attacks. It demonstrated the content validity of the four anatomical location HAE VAS instruments and their suitability for use in clinical trials of recombinant human C1INH (rhC1INH) treatment for ascertaining trial participants' assessments of the severity of acute angioedema symptoms.

Evaluating health services with point of service feedback: perspectives and experiences of patients, staff and community volunteers in an inpatient rehabilitation facility

PURPOSE: To determine patient, staff and community volunteer opinions and experiences of point of service feedback (POSF) in an inpatient rehabilitation facility. METHOD: Participants were recruited by purposeful sampling. Two researchers conducted in-depth semi-scripted interviews with patients, staff or volunteers until no new issues emerged. Manually transcribed interview data underwent thematic analysis that grouped information into categories of related information. RESULTS: Twenty patients, 26 staff from 10 different professional groups, and 2 community volunteers were interviewed. Patient and volunteer data were grouped into five main categories: patients wanted their voice heard and acted on; patients could be positively and negatively affected by POSF; patients could be reluctant to evaluate staff; patients preferred POSF to post-discharge mailed questionnaires; and patients' feedback was influenced by the data collector. Staff wanted: feedback to help them improve the patient experience; and feedback that was trustworthy, usable and used. Staff believed that the feedback-collector influenced patients' feedback and affected how feedback could be used. CONCLUSIONS: Patients, staff and community volunteers identified issues that determine the appropriateness and usefulness of POSF. Policy and practise should address the preferences, needs and experiences of health service users and providers so that POSF produces maximum benefits for both patients and health services. Implications for Rehabilitation POSF can enhance patients' experiences of inpatient rehabilitation by providing a mechanism to be heard and communicating that patients are valued; care must be exercised with patients who find giving feedback stressful. Collecting POSF is most beneficial when coupled with methods to efficiently and effectively respond to feedback. POSF requires interpretation in light of its limitations including patients' ability to accurately and unreservedly communicate their experiences. Who collects POSF requires careful consideration; community volunteers have both advantages and disadvantages.

The National Safety and Quality Health Service Standards requirements for orientation and induction within Australian healthcare: a review of the literature

Introduction: A workplace orientation program is a core requirement of the National Safety and Quality Health Service (NSQHS) Standards in Australia. This is particularly important within healthcare as patient safety and the patient experience are at risk if the healthcare workforce is not supported with an effective orientation and induction program. Aim: This study aimed to review the literature and map the requirements of the NSQHS Standards in relation to orientation and induction. Method: This study utilised online databases to search for literature pertaining to orientation and induction within healthcare. Inclusion criteria included relevance to research questions, and originating in a country with a comparative health system to Australia. Results: The search identified a total of 202 articles of potential relevance with 42 articles meeting the inclusion criteria. Articles were ranked according to hierarchy of evidence criteria for both qualitative and quantitative studies. The importance of using orientation to detail safety and quality roles, the organisations' risk management system, governance structure, operational processes and procedures was highlighted. Patient-centred care, antimicrobial stewardship, clinical handover and mechanisms for escalation of care and emergency assistance should also be covered within the orientation process. Conclusion: There is a dearth of studies in relation to orientation and induction in the healthcare literature. Orientation content is now clearly prescribed, what is lacking within healthcare is a standardised framework. Concept mapping, educational theory and adult learning methods have been shown to enhance workforce problem solving and engagement with orientation, however further research is needed to enhance practice

The missing evidence: a systematic review of patients' experiences of adverse events in health care

PURPOSE: Preventable patient harm due to adverse events (AEs) is a significant health problem today facing contemporary health care. Knowledge of patients' experiences of AEs is critical to improving health care safety and quality. A systematic review of studies of patients' experiences of AEs was conducted to report their experiences, knowledge gaps and any challenges encountered when capturing patient experience data. DATA SOURCES: Key words, synonyms and subject headings were used to search eight electronic databases from January 2000 to February 2015, in addition to hand-searching of reference lists and relevant journals. STUDY SELECTION: Titles and abstracts of publications were screened by two reviewers and checked by a third. Full-text articles were screened against the eligibility criteria. DATA EXTRACTION: Data on design, methods and key findings were extracted and collated. RESULTS: Thirty-three publications demonstrated patients identifying a range of problems in their care; most commonly identified were medication errors, communication and coordination of care problems. Patients' income, education, health burden and marital status influence likelihood of reporting. Patients report distress after an AE, often exacerbated by receiving inadequate information about the cause. Investigating patients' experiences is hampered by the lack of large representative patient samples, data over sufficient time periods and varying definitions of an AE. CONCLUSION: Despite the emergence of policy initiatives to enhance patient engagement, few studies report patients' experiences of AEs. This information must be routinely captured and utilized to develop effective, patient-centred and system-wide policies to minimize and manage AEs.

Health services should collect feedback from inpatients at the point of service: opinions from patients and staff in acute and subacute facilities

OBJECTIVE: Point of service feedback (POSF) enables patients to give health services feedback about their experiences during or immediately after care. Despite the increasing use of POSF, little is known regarding patients' and staffs' opinions of this practice and whether they consider it acceptable or useful. The study aimed to determine patient and staff opinions regarding POSF. DESIGN: A cross-sectional survey. SETTING: Acute and subacute healthcare facilities. PARTICIPANTS: Two hundred and forty-seven patients and 221 staff. RESULTS: Participants indicated that patients should be invited to evaluate health services when they are in hospital or subacute care and improving services was the most important reason for doing so. Staff indicated that:• collecting patients' feedback during their stay was an important part of providing care and not an interruption to it (n = 187 of 221, 85%).• collecting patients' feedback was best done with a variety of methods; talking directly with patients during their stay was the preferred option (n = 161 of 219, 74%).More patients preferred to:• give feedback during their stay (51%) than after discharge from care (15%).• give feedback by talking with someone (45%) than completing a questionnaire (31%).Some patients (14%) were concerned about reprisal from staff if they gave negative feedback. CONCLUSIONS: POSF can be acceptable and useful for evaluating health services and should be incorporated into a person-centred approach that allows patients to choose from a variety of feedback options both during and after their stay. To be most useful, feedback should be incorporated into a quality improvement system.

Assessment of an established dialysis nurse practitioner model of care using mixed methods research

AIMS AND OBJECTIVES: To assess a dialysis nurse practitioner (NP) model of care by examining satisfaction, quality of life (QOL) and clinical outcomes of haemodialysis patients and explore experiences of dialysis nurses.

DESIGN: Mixed methods.

METHODS: Database analyses of dialysis indices amongst a sample (n = 45) of haemodialysis patients; a survey (n = 27) examining patient experience, satisfaction and QOL; and in-depth interviews with a sample (n = 10) of nurses.

RESULTS: Nurses commended the NP role, with five themes emerging: "managing and co-ordinating", "streamlining and alleviating", "developing capability", "supporting innovation and quality" and "connecting rurally". Patients' average age was 66 years and 71% were male. Patients' satisfaction with the care they received was rated 3.5/4 or higher across seven parameters and the average QOL score was 7.9/10.

CONCLUSION: The NP model of care is effective in enhancing patient care within a collaborative framework. The challenge is to sustain, and enhance the model, through mentorship programs for potential candidates.