Patient Passport Research Articles

MyCare Journal

Apple ward in Hinchingbrooke Hospital consists of both medical andstroke patients. Many patients on the unit have had ailments which affecttheir communication, which ranges from dementia to dysarthria followingstrokes. The aim of this project was to provide a tool that would helpstaff be more familiar with patients who may struggle to communicateand provide more comfort in their care, for example by playing TV showsthey enjoy, or providing food and beverages they enjoy, which wouldmake their stay in hospital more pleasant. To develop a communicationtool which would enable the staff on stroke/geriatrics ward atHinchingbrooke hospital to provide personalised care for patients whomay struggle to communicate. The leaflet was based off ‘Patient Passports’which were used in the critical care unit in Salford Royal hospital. TheMyCare journals are to be filled by family/friends and left at the bedsidefor staff to access when needed.I developed the MyCare journal on Canva and I used bright colours todraw attention from the audience. I took inspiration from the questions on the original Patient Passport but tailored them to make them moresuitable for the geriatrics/stroke ward. I used semi-structured interviewsto assess feedback from relatives and staff and provided them with copiesto keep and use. The questions included their view on the design,prompts, and whether they would change anything with the MyCarejournal. Overall, I interviewed three patient families, two doctors on themedical team, and one stroke occupational therapist.This is an ongoing pilot project, so I am continuing to gain feedback.So far, there has been overwhelming positive feedback from families,they have liked the purpose of the leaflet and the design. They alsofound the section on mobility aids and glasses extremely useful. Thefeedback from the medical and therapy team has also been very positive,they felt that it would help to personalise patient care and makethe patients more comfortable during their stay. Overall, families havegiven positive feedback on the MyCare journal. One challenge I havefaced is how to encourage use of the passport on the ward as this wouldrequire ongoing prompts to ensure it is given to patients with communicationdifficulties. There was quite a limited sample size, partially dueto time constraints and partially due to the fact that not all familieswere available. There is also difficulty in implementing and keeping theproject going. I discussed this with the occupational therapy team; theypreviously had a similar project ongoing, and they were keen to use thisone with patients.

Impact of omitting annual reviews for COPD on patient reported care quality– outcomes from the Asthma+Lung COPD patient passport

BackgroundRegular clinical reviews of people with COPD provide an opportunity to optimise management and are recommended in national and international guidelines. However, there are limited data about the relationship between...

The rapid-access patient passport

In this patient story, Lowri Smith explains how she collaborated with Dr Chris Subbe and other contributors to develop a rapid‑access patient passport app to facilitate timely care for patients with complex needs.

Counseling Tobacco Smoke Exposure Reduction Measures in Pediatrics: A Quality Improvement Project.

Introduction:With over 40% of children in the USA exposed to tobacco smoke, the AAP recommends tobacco smoke exposure (TSE) assessment during clinic visits. We aimed to increase the rates of TSE screening and provider counseling regarding TSE reduction using an evidence-based approach.Methods:We conducted the project at a large pediatric pulmonology practice. Baseline caregiver surveys and medical record review of TSE documentation took place in July/August, 2019. From September 2019 to July 2021, PDSA cycles were conducted to increase TSE screening and reduce counseling.Results:Before starting the project, 18% of smoking caregivers acknowledged smoking in the home and 41% in the car. While caregivers strongly desired to decrease TSE (median 9.4/10 on Likert scale), physician counseling of TSE reduction was offered only to 44%. PDSA cycles led to refining our patient passport, a document used during patient intake, which increased screening of TSE from 46% to 85%. Creating an educational handout in our electronic record addressing TSE increased TSE reduction counseling from 44% to 80% of children with smokers in the home.Conclusions:Incorporating TSE screening into established nursing documentation of vital signs led to the sustained screening of TSE among children in a pediatric pulmonology practice. Embedding educational material in our electronic record and changes in clinic processes increased TSE reduction counseling. Similar changes could improve rates of counseling caregivers of other guidelines aimed to improve the children’s health.

P014 Giant Cell Arteritis Patient Pathway: A Multi-Disciplinary Approach to Service Improvement in the time of COVID-19

Abstract Background/Aims The RNHRD is a tertiary rheumatology centre offering a fast-track GCA assessment service. A 2018 departmental audit highlighted areas of good practice including timely assessment of cases but demonstrated irregularities in follow up processes. COVID-19 dramatically changed the way we could deliver our GCA service. Additionally, we saw increases in referrals, confirmed diagnoses and complex disease in our local population during the pandemic. This prompted us to undertake a service improvement project. Our main aims were to optimise follow up in line with national guidelines, enhance patient safety and improve the patient experience. Methods We undertook a service review, starting by mapping the patients’ journey. Guidelines were reviewed and stakeholders consulted. We identified several areas for improvement including; consultant-led risk stratification of patients, formalised follow up pathways and closer collaborative working with relevant departments. Additionally, we sought to streamline our processes to accommodate the increased COVID-19 workload. Results A risk stratified follow up pathway was created. Patients are stratified at initial review, by consultants, into low and high-risk pathways. Follow up intervals have been standardised in line with BSR guidance. Follow up patients are reviewed in a dedicated clinic; medical and nursing clinics run supervised by a vasculitis specialist. Patients transfer between different clinics, dependent on clinical stability. Patient information provided has been standardised, with increased emphasis on flare management and steroid side effects. In collaboration with patients this is being incorporated into a “GCA patient passport”, offering a consistent information resource for patients and clinicians. The nurse-led patient advice line is used frequently by GCA patients. All GCA queries are now directed to the on-call registrar, to ensure same day responses. Temporal artery ultrasound is well utilised and completed efficiently; 82% of scans between September 2019 and September 2021 occurred within 48 hours of referral. Via close working with vascular ultrasound, we have been able to create dedicated daily ultrasound capacity. Collaborative working with our Ophthalmology department has increased; communication channels between departments have been agreed, and education sessions have been provided. Processes for new GCA patients were streamlined, for example moving location of reviews. This ensured ongoing timely review of new GCA patients despite increased referral numbers. Conclusion COVID-19 had a significant impact on service delivery but provided a catalyst to develop our service. By engaging with stakeholders across disciplines, and reacting to patient feedback, we have been able to institute effective and meaningful change. This process is iterative and we plan further assessment of outcomes including co-morbidities and complications. Further formal patient surveys and development of a GCA expert patient group are underway and will inform further service development. Disclosure B. Mulhearn: None. J. Ellis: None. S. Smith: None. S.L. Tansley: None. S. Skeoch: None.

Design and implementation of a patient passport in a pediatric cardiology clinic

BackgroundCommunicating a complex cardiac history to healthcare professionals can pose a challenge to caretakers of pediatric cardiology patients. We sought to develop and implement a pediatric cardiology patient passport. We hypothesize that the passport will help facilitate communication and information sharing between caretakers and other healthcare professionals. DesignBased on input from pediatric cardiologists at a major institution, we designed and implemented a patient passport in our pediatric cardiology clinic. Inclusion criteria included patients with a diagnosis of congenital heart disease, conduction abnormality, or arrhythmia. A patient/caretaker survey was conducted to determine the utilization and utility of the passport. ResultsA total of 100 patients were enrolled in the study between October 2016 and November 2018. The survey was completed by 43% (n = 43) of passport recipients. 88% (n = 35) were “extremely likely” or “somewhat likely” to use the passport in the future. 97% (n = 38) said they “definitely would recommend” or “might recommend” the passport to other pediatric cardiology patients and their families. 97% (n = 38) felt the passport will be helpful in the future when transitioning to adult cardiology. 43% (n = 17) of respondents had used the passport by the time of the survey. Of those who used the passport, 88% (n = 15) felt that the passport made communicating with the healthcare professional easier. No respondents (n = 0) said that the passport was not helpful in their interaction. ConclusionsIntroduction of a patient passport in an outpatient cardiology clinic may be beneficial. Our results suggest that patient caretakers feel that a patient passport can help facilitate both communication and information sharing with other healthcare professionals.

Development and evaluation of a patient passport to promote self-management in patients with heart diseases

BackgroundPatients with cardiovascular diseases (CVD) are treated over a long period of time by physicians and therapists from various institutions collaborating within a multidisciplinary team. Usually, medical records detailing the diagnoses and treatment regimens are long and extensive. Brief overviews of relevant diagnostic and treatment data in the form of a patient passport are currently missing in routine care for patients with CVD. This study aimed to develop and evaluate a patient passport (the Kardio-Pass) based on the needs of patients who had undergone cardiac rehabilitation, and of healthcare professionals.MethodsA mixed method design was adopted consisting of an explorative qualitative phase followed by a quantitative evaluation phase. Interviews with patients and experts were conducted to develop the Kardio-Pass. CVD rehabilitees (N = 150) were asked to evaluate the passport using a semi-standardized written questionnaire.ResultsPatients and experts who were interviewed in the qualitative study phase considered the following passport contents to be particularly important: documentation of findings and diagnoses, cardiac diagnostics and intervention, medication plan, risk factors for heart disease, signs of a heart attack and what to do in an emergency. During the evaluation phase, 93 rehabilitees (response rate: 62%) completed the questionnaire. The Kardio-Pass achieved high overall approval: All respondents considered the information contained in the passport to be trustworthy. The professionalism and the design of the passport were rated very highly by 93 and 92% of participants, respectively. Use of the Kardio-Pass prompted 53% of participants to regularly attend follow-up appointments. The most common reasons for non-use were a lack of support from the attending doctor, failure by the patient to make entries in the passport, and loss of the passport.ConclusionsBy documenting the course of cardiac diseases, the patient passport pools all medical data–from diagnosis to treatment and aftercare–in a concise manner. Rehabilitees who used the cardiac passport rated it as a helpful tool for documenting follow-up data. However, with regard to this explorative study there is a need for further research, particularly on whether the patient passport can improve heart patient care.

Patient experience of COPD care: outcomes from the British Lung Foundation Patient Passport

IntroductionThe British Lung Foundation (BLF) COPD Patient Passport (www.blf.org.uk/passport) was developed as a resource to help people with chronic obstructive pulmonary disease (COPD) and clinicians to consider the care received...

Barriers to adoption of a personal health record in an ophthalmic setting: lessons from implementation of a Glaucoma Patient Passport.

PurposeSelf-care in chronic disease is increasingly important. In glaucoma services, there is an unmet need for a self-care tool such as a patient passport. This study aims to evaluate adoption of a new self-care tool, the Glaucoma Patient Passport (GPP) within a tertiary hospital glaucoma service.Patients and methodsThe GPP was designed following consultation exercises between patients and clinicians at the first and second UK National Glaucoma Think Tanks. A patient questionnaire, comprising a mixed methods quantitative and qualitative research approach was used to explore the utility of GPP, patient attitude to GPP and barriers to adoption, 6 months after GPP receipt.ResultsGPP feedback was received from 62 patients. On-going utilization of the GPP after receipt was high, at 84%, with patients most commonly using the GPP at home, to “look for information.” Seventy-three percent reported improved knowledge of glaucoma care since using the GPP, with two-thirds (63%) reporting that the GPP had improved their glaucoma care. Three main themes were identified in exploring barriers to GPP adoption; clinician involvement in GPP use, GPP size, and GPP use in visual impairment.ConclusionImplementation and adoption of the world’s first GPP were a success. GPP utility was high and patient attitudes were predominantly positive, with improved self-care. However, several areas were identified for future GPP improvement. The GPP has the potential to improve patient self-care in glaucoma, bridging the care gap created by the increased workload in glaucoma services.

The Uveitis Patient Passport: A Self-Care Tool

ABSTRACTPurpose: Patient self-care tools can improve patient outcomes in chronic disease. In uveitis, there is an unmet need for the innovative Uveitis Patient Passport (UPP). This study aims to evaluate the success of the passport’s introduction into a tertiary uveitis service through patient experience.Methods: The UPP, created in consultation with patients and the multidisciplinary team, was evaluated using a patient questionnaire and mixed quantitative and qualitative methodology.Results: Key themes emerged, with the passport used by participants as a self-care resource and an aid for cross-specialty communication. Patient involvement in evaluation identified key areas for passport development in line with patient needs. These included improving clinician engagement and future transference into a smartphone application.Conclusion: The introduction of the first UPP was a success, especially as a self-care tool for supporting patients in managing their uveitis with the potential to improve patient outcomes.

Patient Experience in the Transition of Home Parenteral Nutrition Services Between Centers: Evaluation of a Transition Model.

Background:In 2014, Dudley Group of Hospitals (DGH) underwent an organizational change that necessitated closure of their Home Parenteral Nutrition (HPN) service. University Hospitals Birmingham NHS Foundation Trust (UHBFT) transitioned 50 patients from DGH into their HPN service. The transition model included communication with patients, communication between centers (development of an HPN Patient Passport), and rapid follow-up on transition ensuring clinical care continued uninterrupted.Aim:Evaluate patient experience and their level of satisfaction with our HPN transition model.Method:A 19-point, mixed mode paper-based questionnaire was developed. Questionnaires were posted to 42 surviving patients still receiving HPN.Results:Response rate: 67%. Communication with patients: The transition was discussed with them, and they had appropriate contact details during the process—94%. Patients informed of patient transition meetings—97%. Attendance at meetings: DGH 89%, UHBFT 55%. Ongoing care at UHBFT: 86% very satisfied and 11% satisfied. Overall rating of the transition process: 79% very satisfied and 14% satisfied. Friends and Family Test: 82% “extremely likely” and 18% “likely” to recommend our services.Conclusion:The transition model used was successful, with the majority of patients “very satisfied” with how the transition was managed and their ongoing care. Effective communication with patients and between the 2 centers was the key to success. To our knowledge, this is the first report of transition of care for HPN patients. It is proposed that this model may be used by other centers to plan for future HPN service transitions where necessary.

"They've got a lot of needs and I don't think they're being met fully": A qualitative study of the multi-professional team approach to the management of children with optic pathway gliomas.

Optic pathway gliomas (OPGs) are low-grade tumours of the visual pathway. Although survival rates are high, there is considerable morbidity and hence treatment focuses on preservation of vison and quality of life. The multiple, complex issues faced by these patients are often confounded by a concurrent diagnosis of neurofibromatosis type-1 (NF1). As there is a paucity of literature addressing the current practices of the multi-professional team (MPT) caring for children diagnosed with an OPG, individual professional experiences often guide the MPT's approach to the care of these children and their families. This study aimed to gain views on the management of children with OPGs, from MPT members involved in their care, in order to inform recommendations on how to improve the service offered to these children and their families. A qualitative design collected experiential data from MPT members via semi-structured interviews. MPT focus groups were used to validate the data. Data collected from 20 MPT members resulted in the overarching themes of Issues Faced by the Patient and Family and Challenges to the Holistic Care of the Patient. Four recommendations are suggested, namely (1) the production of an MPT training resource, (2) improved visual team links, (3) an OPG patient passport and (4) a joint NF1-OPG clinic. There are many challenges to MPT members providing holistic care to patients with OPGs. As no OPG clinical practice guidelines currently exist, it is suggested that the above recommendations be piloted with evaluation to validate their use.

Development of a tailored strategy to improve postpartum hemorrhage guideline adherence

BackgroundDespite the introduction of evidence based guidelines and practical courses, the incidence of postpartum hemorrhage shows an increasing trend in developed countries. Substandard care is often found, which implies an inadequate implementation in high resource countries. We aimed to reduce the gap between evidence-based guidelines and clinical application, by developing a strategy, tailored to current barriers for implementation.MethodsThe development of the implementation strategy consisted of three phases, supervised by a multidisciplinary expert panel. In the first phase a framework of the strategy was created, based on barriers to optimal adherence identified among professionals and patients together with evidence on effectiveness of strategies found in literature. In the second phase, the tools within the framework were developed, leading to a first draft. In the third phase the strategy was evaluated among professionals and patients. The professionals were asked to give written feedback on tool contents, clinical usability and inconsistencies with current evidence care. Patients evaluated the tools on content and usability. Based on the feedback of both professionals and patients the tools were adjusted.ResultsWe developed a tailored strategy to improve guideline adherence, covering the trajectory of the third trimester of pregnancy till the end of the delivery. The strategy, directed at professionals, comprehending three stop moments includes a risk assessment checklist, care bundle and time-out procedure. As patient empowerment tools, a patient passport and a website with patient information was developed. The evaluation among the expert panel showed all professionals to be satisfied with the content and usability and no discrepancies or inconsistencies with current evidence was found. Patients’ evaluation revealed that the information they received through the tools was incomplete. The tools were adjusted accordingly to the missing information.ConclusionA usable, tailored strategy to implement PPH guidelines and practical courses was developed. The next step is the evaluation of the strategy in a feasibility trial.Trial registrationClinical trial registration: The Fluxim study, registration number: NCT00928863.

Development of a Multidisciplinary Brain Tumour Patient Passport

Introduction: The use of MDT patient passports, for enhanced communication between disciplines is a technique that has been employed to assist with optimum service delivery in certain patient cohorts. Change Implemented: A need for the development of a brain tumour passport was identified by discussions across the neuro-oncology MDT. Representation from all disciplines within the MDT were involved in the design of the document. Each discipline contributed to the content and format of their individual section. Sections were also provided for input from community based colleagues to allow for use of the passport in acute, sub-acute and community based treatments. Aim: To develop a multidisciplinary (MDT) brain tumour passport, to enhance the management of high grade brain tumour patients during the course of their treatment while facilitating inter-disciplinary communication. Population: Individuals admitted to the neurosurgical department requiring brain tumour surgery and follow-up radiation or chemotherapy received the passport. Timeline: Development took two years due to large numbers of disciplines and individuals involved. A repeat questionnaire will be administered one year after the introduction of the passport into routine practice. Potential modifications would then be introduced to enhance usability for the patients, based on feedback. Highlights: Service user feedback has been very positive and highlights the benefits gained from use of the passport: “…though I’m intimidated by the illness, I found it very helpful to read the guide” “…as part of my tumour is memory loss and having a record in a proper book as opposed to my own notebook makes things a lot easier…taking a good amount of stress and confusion out of my treatment and hospital visits”. Sustainability The passport was developed with funding support from a pharmaceutical company, to assist with design and printing. Future printing of the passport will require further funding from industry partners. The hospital may also incur the printing fees based on positive user experience. Transferability: The neuro-oncology department is now considering implementation of a similar passport for use in spinal tumour patients. The expertise gained from this project could also allow the development of passports for use in any chronic condition throughout the organisation. Conclusion: The passport provided a centralised location for all information, relating to their tumour management and as a result provided some relief to their burden of suffering. The passport also reduced the risk of duplication in the patient’s management by allowing access to the patient’s correct medical information, when required. Discussions: 16 questionnaires were administered to patients to obtain feedback on its design and suitability. Seven were returned completed, a 44% response rate. All participants felt that the passport would be useful and would enhance their management. Minor modifications were suggested, including a notes section, which is included in the final design. Lessons Learned: Effective interdisciplinary communication is essential to optimise patient care. A central location to maintain all communications lessens patient burden and suffering when undergoing life altering medical treatment. A brain tumour patient passport can assist to lessen this burden of suffering

Vascular access passports.

Andrew Jackson, IV Nurse Consultant, Rotherham NHS Foundation Trust, outlines the rationale for, and elements of, the patient passport for central catheters developed at his trust.

The Patient Passport Program: An Intervention to Improve Patient–Provider Communication for Hospitalized Minority Children and Their Families

ObjectiveEffective patient–provider communication is essential to improve health care delivery and satisfaction and to minimize disparities in care for minorities. The objective of our study was to evaluate the impact of a patient–provider communication program, the Patient Passport Program, to improve communication and satisfaction for hospitalized minority children. MethodsThis was a qualitative evaluation of a communication project for families with hospitalized children. Families were assigned to either the Patient Passport Program or to usual care. The Passport Program consisted of a personalized Passport book and additional medical rounds with medical providers. Semistructured interviews at the time of patient discharge were conducted with all participants to measure communication quality and patient/family satisfaction. Inductive qualitative methods were used to identify common themes. ResultsOf the 40 children enrolled in the Passport Program, 60% were boys; the mean age was 9.7 years (range, 0.16–19 years). The most common themes in the qualitative analysis of the interviews were: 1) organization of medical care; 2) emotional expressions about the hospitalization experience; and 3) overall understanding of the process of care. Spanish- and English-speaking families had similar patient satisfaction experiences, but the Passport families reported improved quality of communication with the medical care team. ConclusionsThe Patient Passport Program enhanced the quality of communication among minority families of hospitalized children with some common themes around the medical care expressed in the Passport book.

Understanding the needs of people with dementia and family carers.

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Patient passport.

This article outlines the development, testing and evaluation of a patient passport designed specifically for people with severe asthma, who often prefer to self-manage rather than attend emergency services, and thereby put their lives at risk.

Development of a patient passport in asthma management

This article outlines the development, testing and evaluation of an asthma patient passport (APP). The APP was designed specifically for patients with severe and difficult-to-manage asthma. This patient group tends not to access emergency services when needed, potentially putting life at risk. These individuals prefer to self-manage rather than expose themselves to feelings of vulnerability in the emergency department (ED). The aims of the project were to save lives by ensuring these patients attend the ED, to improve patient experience in the ED and to assist healthcare professionals in their clinical decision making, enabling them to deliver appropriate and individualised emergency treatment.

Patient needs from general practice following a traumatic injury: a qualitative study using narrative interviews with British service personnel

ObjectivesTo explore the first period of sick leave in military patients following a traumatic battle injury, and the role of primary care. To identify if and where patients perceived difficulties.MethodParticipants...