ABSTRACT
Introduction:A patient experience survey was undertaken as part of the role of the Macmillan Consultant Therapy Radiographer for the bone and brain metastases patients to inform future development of the service.Method:A questionnaire was developed and approved by the Trust's local Questionnaire, Interview and Survey Group to survey the experiences and satisfaction of the service including the informed consent process, radiotherapy appointments and overall experience and satisfaction. The survey used qualitative and quantitative methods, including Likert Scales and free comment boxes. The responses were analysed by counting the frequency of each response and identifying any themes in free text responses.Results:Most patients were satisfied with the consent process with 1/36 patients reporting a lack of understandable information and 4/36 wanting more side effect information. The option of plan and treat was a preference of 53% of patients due to travelling back and forth to the centre;however, only 6% stated that they wanted two separate appointments. Ninety-four percent of patients felt that they had complete confidence and trust in the professional who consented them and 86% did not feel fully involved in the decision-making process. Overall, the service was rated as 10/10 by 61% of patients (n = 36).Conclusions:The patients surveyed were satisfied with their experience of the Palliative Radiotherapy Service;however, it needs to be developed further to meet the needs and expectations of the service users.
ABSTRACT
BACKGROUND: Despite the importance of diagnosis and treatment, obstructive sleep apnea (OSA) remains a vastly underdiagnosed condition; this is partially due to current OSA identification methods and a complex and fragmented diagnostic pathway. OBJECTIVE: This prospective, single-arm, multistate feasibility pilot study aimed to understand the journey in a nonreferred sample of participants through the fully remote OSA screening and diagnostic and treatment pathway, using the Primasun Sleep Apnea Program (formally, Verily Sleep Apnea Program). METHODS: Participants were recruited online from North Carolina and Texas to participate in the study entirely virtually. Eligible participants were invited to schedule a video telemedicine appointment with a board-certified sleep physician who could order a home sleep apnea test (HSAT) to be delivered to the participant's home. The results were interpreted by the sleep physician and communicated to the participant during a second video telemedicine appointment. The participants who were diagnosed with OSA during the study and prescribed a positive airway pressure (PAP) device were instructed to download an app that provides educational and support-related content and access to personalized coaching support during the study's 90-day PAP usage period. Surveys were deployed throughout the study to assess baseline characteristics, prior knowledge of sleep apnea, and satisfaction with the program. RESULTS: For the 157 individuals who were ordered an HSAT, it took a mean of 7.4 (SD 2.6) days and median 7.1 days (IQR 2.0) to receive their HSAT after they completed their first televisit appointment. For the 114 individuals who were diagnosed with OSA, it took a mean of 13.9 (SD 9.6) days and median 11.7 days (IQR 10.1) from receiving their HSAT to being diagnosed with OSA during their follow-up televisit appointment. Overall, the mean and median time from the first televisit appointment to receiving an OSA diagnosis was 21.4 (SD 9.6) days and 18.9 days (IQR 9.2), respectively. For those who were prescribed PAP therapy, it took a mean of 8.1 (SD 9.3) days and median 6.0 days (IQR 4.0) from OSA diagnosis to PAP therapy initiation. CONCLUSIONS: These results demonstrate the possibility of a highly efficient, patient-centered pathway for OSA workup and treatment. Such findings support pathways that could increase access to care, reduce loss to follow-up, and reduce health burden and overall cost. The program's ability to efficiently diagnose patients who otherwise may have not been diagnosed with OSA is important, especially during a pandemic, as the United States shifted to remote care models and may sustain this direction. The potential economic and clinical impact of the program's short and efficient journey time and low attrition rate should be further examined in future analyses. Future research also should examine how a fast and positive diagnosis experience impacts success rates for PAP therapy initiation and adherence. TRIAL REGISTRATION: ClinicalTrials.gov NCT04599803; https://clinicaltrials.gov/ct2/show/NCT04599803.
ABSTRACT
BACKGROUND: Facial nerve palsy leaves people unable to move muscles on the affected side of their face. Challenges exist in patients accessing facial neuromuscular retraining (NMR), a therapy used to strengthen muscle and improve nerve function. Access to therapy could potentially be improved through the use of digital technology. However, there is limited research available on patients' and clinicians' views about the potential benefits of such telerehabilitation based on their lived experiences of treatment pathways. OBJECTIVE: This study aims to gather information about facial palsy treatment pathways in the United Kingdom, barriers to accessing NMR, factors influencing patient adherence, measures used to monitor recovery, and the potential value of emerging wearable digital technology. METHODS: Separate surveys of patients with facial palsy and facial therapy specialists were conducted. Questionnaires explored treatment pathways and views on telerehabilitation, were co-designed with users, and followed a similar format to enable cross-referencing of responses. A follow-up survey of national specialists investigated methods used to monitor recovery in greater detail. Analysis of quantitative data was conducted allowing for data distribution. Open-text responses were analyzed using thematic content analysis. RESULTS: A total of 216 patients with facial palsy and 25 specialist therapists completed the national surveys. Significant variations were observed in individual treatment pathways. Patients reported an average of 3.27 (SD 1.60) different treatments provided by various specialists, but multidisciplinary team reviews were rare. For patients diagnosed most recently, there was evidence of more rapid initial prescribing of corticosteroids (prednisolone) and earlier referral for NMR therapy. Barriers to NMR referral included difficulties accessing funding, shortage of specialist therapists, and limited awareness of NMR among general practitioners. Patients traveled long distances to reach an NMR specialist center; 9% (8/93) of adults reported traveling ≥115 miles. The thematic content analysis demonstrates positive attitudes to the introduction of digital technology, with similar incentives and barriers identified by both patients and clinicians. The follow-up survey of 28 specialists uncovered variations in the measures currently used to monitor recovery and no agreed definitions of a clinically significant change for any of these. The main barriers to NMR adherence identified by patients and therapists could all be addressed by using suitable real-time digital technology. CONCLUSIONS: The study findings provide valuable information on facial palsy treatment pathways and views on the future introduction of digital technology. Possible ways in which emerging sensor-based digital technology can improve rehabilitation and provide more rigorous evidence on effectiveness are described. It is suggested that one legacy of the COVID-19 pandemic will be lower organizational barriers to this introduction of digital technology to assist NMR delivery, especially if cost-effectiveness can be demonstrated.