Randomized Prospective Trial Exploring the Impact of Structured Journaling in Patients With Sarcoma on the Management of Treatment-Related Adverse Events

PURPOSE: Treatment-related adverse events associated with systemic anticancer therapy (SACT) can deter patients with sarcoma from completing treatment. With self-monitoring, patients may be better empowered to self-advocate for improved symptom management. We hypothesized that by incorporating journaling, a structured form of self-monitoring, care team communication, and symptom management would improve. We thus designed a prospective randomized trial exploring journaling as a therapeutic adjuvant for symptom management ( NCT03258892 ). METHODS: Participants with sarcoma initiating SACT were randomly assigned to receive either a symptom management journal at the start of SACT or after completing two cycles of SACT. Symptom journals were designed jointly by a cancer patient focus group and by education experts. Journals were reviewed with clinical staff at each visit. Participant responses were obtained through questionnaires. Patient call volume was obtained through the electronic health record. RESULTS: Of 64 participants consented for the trial, 53 were evaluable for analysis. Fifty-five percent of participants reported that the journal was at least moderately useful. These participants were more likely to report improved communication scores ( P = .027), symptom management ( P = .011), and quality of life (QOL) ( P = .019). Participants who received the journal early were less likely to report a decrease in QOL as compared with the late journal group ( P = .757 v P = .035). CONCLUSION: To our knowledge, this is the first prospective randomized trial evaluating the use of structured journaling as a low-cost means to improve treatment-related adverse event management and QOL in patients with sarcoma undergoing SACT. These promising results will need to be confirmed by additional studies.

AB1347-HPR DIGITAL SOLUTIONS TO AID SELF-MANAGEMENT: DEVELOPING A RHEUMATOLOGY APP FOR USE BY ANY PATIENT ATTENDING OUR DEPARTMENT

Background:Managing complex rheumatological conditions requires information about the disease itself, treatments regimes and side effects. This is particularly important for those with a new diagnosis.A local patient focus group identified the need for trustworthy information, written and reviewed by their rheumatology team to aid self-management. They felt information should be readily accessible, in one place, to re-read / re-listen to, as required.Objectives:To develop a Rheumatology App, for any patient attending our department, to support self-management.Methods:We worked with a number of rheumatology patients, of differing ages, the Rheumatology multi-disciplinary team (MDT) and an industry partner, hci.digital, to develop our App, called ‘Rheumatology Connect’.We developed over 30 short videos, provided links to other valuable patient websites e.g. Versus Arthritis, NRAS, NASS, and wrote short articles, to provide basic headline information about various different diseases, common treatments e.g. Methotrexate. We provided easily accessible contact details and information about our clinic locations (including postcodes, bus links, car parking). Video content was written by the clinical authors and filmed by hci.digital.Patient involvement in designing the layout was particularly important for the App to be easily navigable by all.We launched the App, in June 2018, at a local patient educational conference. We encourage all patients on regular follow up to download it /use it and remind everyone about it in our clinic letters.Results:Downloads have been ongoing since launch, with over 1953 downloads and 21930 page views, with peaks around the time of our monthly education sessions when we advertise the App to new patients.Over 54% spent between 2 to 5+ minutes in the App at a time. Most of the videos in the App are about 2 minutes long. Common hits include: videos on medications, various conditions, contact details, clinic locations, and services available.We have had a number of spontaneous contacts from patients saying how valuable they find the information we have given them.The App aids efficiency by allowing direct phone calls to the correct member of the MDT e.g. rheumatology physio, rather than going through the secretaries. We are also encouraging direct email contact via the App. These aspects are helping us make our services more efficient.Conclusion:The App continues to be downloaded and used by our patients. It has become an important part of our patient education efforts, especially for those with a new diagnosis.We have had a significant increase in email contact from patients, allowing us to be more efficient by responding more quickly to patient queries, avoid additional telephone calls and avoid ansa-phone messages.To date, the App continues to be downloaded by patients and we have received very positive feedback. Having surveyed the users, our next step is to develop interactive PROMS, a calendar reminder function and medicines management function as these have been identified as additions users would find helpful to manage their disease. We have raised funds to develop the App. The updated app should be available by May 2020Download free from App store (search ‘Rheumatology Connect’) or go towww.rheumatologyconnect.info.Disclosure of Interests:None declared

P036 Patients with learning disability, views on the use of a patient-held medication passport

AimTo establish the views of adolescent patients with learning disabilities and their carers, of the patient-held medication passport (My Medication Passport-MMP). MethodsA questionnaire was devised to find out if patients/carers thought a patient-held record of their medications (the MMP) was useful and to suggest improvements as appropriate. The MMP is a patient-held record of medicines use available as a passport sized booklet.1 MMPs were distributed to patients and carers for them to read and review at a patient focus group. Ethics approval was not required for this study.Results20 questionnaires were sent and a total of 17 completed questionnaires were returned (85% response rate). 70% (n=12) of the questionnaires were completed by carers, 24% (n=4) by family members and 1% (n=1) by a patient. 100% (n=17) of carers/patients who reviewed the MMP found it useful. When asked about features they liked about MMP; Seven carers noted the MMP was easy to use; four carers felt MMP was a good way to keep (personal) medicines information up to date; with three further clarifying that it could be used as a ‘concise way of keep track (of medicines)’ and two specified they liked that ‘all the information is in one book’. When Patients/carers were asked for ways MMP could be improved; two carers asked for more space to document past medication, including an area to ‘keep track of the behaviours and how it is exhibited because of the medication’; one carer noted that ‘some youngsters would benefit from more visual learning’ and one asked for a version to be made available via app on smart phone. Limitations included a small sample with limited exposure to MMP. The patient group sampled may not be representative.ConclusionPassports as tools aim to help patients better manage their medicines and have been successfully used in a patient with learning disability.2 It is encouraging to see that this small group of patients with learning disability find the MMP useful. Suggested adaptations to MMP for this patient group included it being more visual, and having areas for past medication. Other trials of MMP have suggested that it may require a section surrounding medicines administration. Patients have since been directed to the MMP app which can be downloaded onto a smartphone. There are many opportunities for future work including conducting an evaluation of the MMP in use over time and across different sectors, and to determine what patients actually record in the MMP.ReferencesBarber S, et al. Evaluation of My Medication Passport: a patient-completed aide-memoire designed by patients, for patients, to help towards medicines optimisation. BMJ Open4(8). https://bmjopen.bmj.com/content/4/8/e005608Jubraj B. Use of a medication passport in a disabled child seen across many care settings. BMJ Case Reports. 25 February 2015; http://casereports.bmj.com/content/2015/bcr-2014-208033Save

LO92: Improving patient communication in an emergency department's rapid assessment zone

Background: Emergency Department (ED) communication between patients and clinicians is fraught with challenges. A local survey of 65 ED patients revealed low patient satisfaction with ED communication and resultant patient anxiety. Aim Statement: To increase patient satisfaction with ED communication and to decrease patient anxiety related to lack of ED visit information (primary aims), and to decrease clinician-perceived patient interruptions (secondary aim), each by one point on a 5-point Likert scale over a six-month period. Measures & Design: We performed wide stakeholder engagement, surveyed patients and clinicians, and conducted a patient focus group. An inductive analysis followed by a yield-feasibility-effort grid led to three interventions, introduced through sequential and additive Plan-Do-Study-Act (PDSA) cycles. PDSA 1: clinician communication tool (Acknowledge-Empathize-Inform [AEI] tool), based on survey themes and a literature review, and introduced through a multi-modal education approach. PDSA 2: patient information pamphlets developed with stakeholder input. PDSA 3: new waiting room TV screen with various informational ED-specific videos. Measures were conducted through anonymous surveys: Primary aims towards the end of the patient ED stay, and the secondary aim at the end of the clinician shift. We used Statistical Process Control (SPC) charts with usual special cause variation rules. Two-tailed Mann-Whitney tests were used to assess for statistical significance between means (significance: p < 0.05). Evaluation/Results: Over five months, 232 patient and 104 clinician surveys were collected. Wait times, ED processes, timing of typical steps, and directions were reported as the most important communication gaps, they and were included in the interventions. Patient satisfaction improved from 3.28 (5 being best, all means; n = 65) to 4.15 (n = 59, p < 0.0001). Patient anxiety improved from 2.96 (1 being best; n = 65) to 2.31 (n = 59, p < 0.01). Clinician-perceived interruptions went from 4.33 (1 being best; n = 30) to 4.18 (n = 11, p = 0.98). SPC charts using Likert scales did not show special cause variation. Discussion/Impact: A sequential, additive approach undertaken with pragmatic and low-cost interventions based on both clinician and patient input led to increased patient satisfaction with communication and decreased patient anxiety due to lack of ED visit information after PDSA cycles. These approaches could easily be replicated in other EDs to improve the patient experience.