IMPROVING THE UPTAKE OF ELECTRONIC PATIENT REPORTED OUTCOME MEASURES IN A SPECIALISED AXIAL SPONDYLOARTHROPATHY CLINIC

BackgroundSheffield Teaching Hospitals (STH), UK, has a specialised axial spondyloarthropathy (axSpa) clinic run by a rheumatology consultant and physiotherapist with special interest in this area. BASDAI and BASFI patient reported outcome measures are used to assess disease activity and response to treatment, in line with national guidelines. STH has invested in MyPathway (MP), an electronic patient messaging system used for patient information, appointments and electronic patient reported outcome measures (ePROMs). The data can also be viewed at a system level on a clinician dashboard. Prior to 2020 the uptake of ePROMs was low in the axSpa clinic. The move primarily to telephone consultations in March 2020, due to the COVID-19 pandemic, created an opportunity for increasing the use of MP for ePROMs collection to enable improved remote monitoring of patients with axSpa.ObjectivesThis quality improvement project aimed to increase the use of electronic BASDAI and BASFI (ePROMs) in the axSpa clinic.MethodsA multi-pronged approach has been taken since March 2020 to increase ePROMs completion and improve their use. Each appointment was used as an opportunity to discuss and recruit patients to MP. Clinicians invited each patient to join MP and sent them a link after their appointment. QR codes were then added to all rheumatology patient letters encouraging patients to register. A pathway was set up that automatically sent a prompt to patients registered on MP to complete their BASDAI and BASFI questionnaires prior to clinic appointments. Clinicians began logging into MP to view scores during appointments to provide patients with real-time feedback.A mixed methods approach was used to assess the uptake of ePROMs over time. We tracked MP registration rates and BASDAI completion rates as the key outcome measures, using a run chart to assess special cause variation. We undertook a patient focus group to explore attitudes towards ePROMs, key barriers and opportunities for further improvement.ResultsThe total number of axSpa patients seen in the specialised clinic (named LADAS) who have registered with MP has increased from 56 (35.9%) in January 2019 to 200 (58.9%) in September 2022. There has been an improvement in the BASDAI completion rate, with 80% of patients completing more than one BASDAI in 2022, compared to 24% in 2019, as illustrated on a run chart (Figure 1). Patients can complete BASDAI forms sent to them in a previous month, therefore the completion rate some months exceeds 100%.In a dedicated focus group, patients reported that ePROMs were generally more convenient, and provided a useful record to refer back to. This could be further improved by development of a graph function to view scores over-time and the ability for patients to complete a questionnaire between appointments when they feel their disease is more active. A key theme for improving the use of ePROMs was the need for more discussion about their utility and around individual patient's scores. There is concern that the BASDAI and BASFI scores are arbitrary and lack nuance, and that the importance of these scores at an individual patient level is not clear. This may be rectified by more discussion with clinicians in appointments, to add meaning to these scores. There was also concern that sleep and other generic health measures are not covered in the BASDAI or BASFI. The EQ-5D, a generic questionnaire, is also sent to axSpa patients, but there seems to be a lack of patient awareness regarding it. There is an appetite to improve and standardise the amount of patient information accessible on MP, for example disease information and links to patient support groups.ConclusionThere has been a clear improvement in the completion of ePROMs in the dedicated axSpa clinic at STH, over the last three years. Patient feedback has highlighted key areas for further improvement to maximise the potential of ePROMs, including more discussion around PROM scores to increase understanding and add individual patient meaning and nuance.Figure 1.AcknowledgementsI have no acknowledgements to declare.Disclosure of InterestsJudith Jade: None declared, Zoe Cox: None declared, Emily Fox: None declared, Rachel Tattersall Speakers bureau: honoraria as speaker for Abbvie, Lisa Dunkley Speakers bureau: honoraria as speaker/ teaching for UCB/ Abbvie/ Pfizer.

Outcome measures from international older adult care home intervention research: a scoping review.

BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.

Thirty years of ANZICS CORE: A clinical quality success story

In 2023, the Australian and New Zealand Intensive Care Society (ANZICS) Registry run by the Centre for Outcomes and Resources Evaluation (CORE) turns 30 years old. It began with the Adult Patient Database, the Australian and New Zealand Paediatric Intensive Care Registry, and the Critical Care Resources Registry, and it now includes Central Line Associated Bloodstream Infections Registry, the Extra-Corporeal Membrane Oxygenation Database, and the Critical Health Resources Information System. The ANZICS Registry provides comparative case-mix reports, risk-adjusted clinical outcomes, process measures, and quality of care indicators to over 200 intensive care units describing more than 200 000 adult and paediatric admissions annually. The ANZICS CORE outlier management program has been a major contributor to the improved patient outcomes and provided significant cost savings to the healthcare sector. Over 200 peer-reviewed papers have been published using ANZICS Registry data. The ANZICS Registry was a vital source of information during the COVID-19 pandemic. Upcoming developments include reporting of long-term survival and patient-reported outcome and experience measures.

Telerheumatology during the covid-19 pandemic and beyond

The coronavirus disease 2019 (COVID-19) pandemic in 2020 led to abrupt and extensive disruption of in-person healthcare with limited attendance at clinic visits. Telemedicine became an essential tool for continuing management of rheumatic disease conditions during the COVID-19 pandemic;telehealth initiatives included synchronous telephone and video consultations and asynchronous care via email and short text messaging. This chapter outlines the status of telehealth in rheumatology immediately before the COVID-19 pandemic, provides a summary of telemedicine initiatives during the COVID-19 pandemic, and gives an overview of the common lessons learned internationally. Insights gained during the COVID-19 pandemic regarding telehealth and consideration of the alignment of patients' needs and available tools can inform best practices on future use of telerheumatology. © The Author(s), under exclusive license to Springer Nature Switzerland AG 2022. All rights reserved.

Self-evidence-based digital care programme improves health-related quality of life in adults with a variety of autoimmune diseases and long COVID: a retrospective study.

OBJECTIVE: To retrospectively investigate the feasibility and impact on health-related quality of life (HRQoL) of a digital care programme (DCP) designed to guide personalised diet and integrative interventions in a variety of autoimmune diseases and long COVID. METHODS: Adults who participated in the DCP between April 2020 and June 2022, and for whom baseline (BL) and end-of-programme (EOP) Patient-Reported Outcomes Measurement Information System (PROMIS) scores were available, were included in this retrospective study. Changes from BL to EOP were calculated using standardised T-scores. RESULTS: Two hundred two adults between 17 and 82 years old were included. Diagnoses included: rheumatoid arthritis (20.1%); long COVID (14.9%); psoriatic arthritis (10.9%); psoriasis (8.9%); systemic lupus erythematosus (6.4%); inflammatory bowel disease (5.9%); multiple sclerosis (5.9%); ankylosing spondylitis (5.4%) and other (23.3%). On average, individuals entered observations 7.6 times/day on 86% of programme days, attended 14 coach sessions and completed the programme in an average of 17.2 weeks. Statistically significant improvements were seen in all 10 PROMIS domains analysed. Individuals with higher severity of compromise at BL experienced greater average improvements than all-comers in all 10 PROMIS domains included. CONCLUSION: An evidence-based DCP that uses patient data to help identify hidden symptom triggers and guide personalised dietary and other non-pharmacological interventions was associated with a high level of engagement and adherence and statistically significant, clinically meaningful improvements in HRQoL. Those with the least favourable PROMIS scores at BL experienced the greatest improvements.

Virtual family-centered hospital rounds in the neonatal intensive care unit: protocol for a cluster randomized controlled trial.

BACKGROUND: Family-centered rounds is recognized as a best practice for hospitalized children, but it has only been possible for children whose families can physically be at the bedside during hospital rounds. The use of telehealth to bring a family member virtually to the child's bedside during hospital rounds is a promising solution. We aim to evaluate the impact of virtual family-centered hospital rounds in the neonatal intensive care unit on parental and neonatal outcomes. METHODS: This two-arm cluster randomized controlled trial will randomize families of hospitalized infants to have the option to use telehealth for virtual hospital rounds (intervention) or usual care (control). The intervention-arm families will also have the option to participate in hospital rounds in-person or to not participate in hospital rounds. All eligible infants who are admitted to this single-site neonatal intensive care unit during the study period will be included. Eligibility requires that there be an English-proficient adult parent or guardian. We will measure participant-level outcome data to test the impact on family-centered rounds attendance, parent experience, family-centered care, parent activation, parent health-related quality of life, length of stay, breastmilk feeding, and neonatal growth. Additionally, we will conduct a mixed methods implementation evaluation using the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. DISCUSSION: The findings from this trial will increase our understanding about virtual family-centered hospital rounds in the neonatal intensive care unit. The mixed methods implementation evaluation will enhance our understanding about the contextual factors that influence the implementation and rigorous evaluation of our intervention. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT05762835. Status: Not yet recruiting. First posted: March 10, 2023; last update posted: March 10, 2023.

Quality of Life Assessment With European Organisation for Research and Treatment of Cancer Questionnaire (Head and Neck Module 43) and Its Clinicopathological Correlation Among Patients Treated for Oral Squamous Cell Carcinoma: An Exploratory Study.

Introduction Oral cancer has a great impact on quality of life (QOL). Many risk factors influence the overall QOL. Our study was performed to evaluate the QOL among patients with oral cancer and to correlate it with age, gender, tobacco usage, and clinicopathological details. Methods We have used the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Head and Neck Module (EORTC QLQ-HN43) and the Quality of Life Questionnaires for Core 30 (QLQ-C30) among the patients diagnosed with oral cancer after reporting to our institution. The Gpower calculation based on differences between two independent means reported by Meera et al. had a total sample size of 28 with an actual power of 0.9616. Thirty-five patients were included in the present study. Ethical clearance for this study was obtained, and there were no gender or age limits for enrollment. The patient demographic details and case history with relevant treatment information were collected from the DIAS (Dental Information Archival Software) of Saveetha Dental College, Chennai. After obtaining informed consent from the patients, the EORTC QLQ-HN43 and QLQ-C30 questionnaires were given to them. It was used both in Tamil and English. Various domains such as pain, appearance, and oral function were documented. The findings were correlated with clinical and histopathological findings. The collected data were tabulated and statistically analyzed with IBM Statistical Package for the Social Sciences (SPSS) version 20 (IBM Corp., USA). The mean ± SD were calculated for continuous variables, and frequency with percentage was determined for categorical parameters. Results The study included both men (57%) and women (43%) in the age range of 30-70 years, with a mean age of 50 years. Study samples included tobacco users (82%) and non-tobacco users (18%). Out of the 35 patients, 15 patients had lesions involving the buccal mucosa (42%) and 10 involving the tongue (28%). Oral squamous cell carcinoma (OSCC) was the most common type of lesion, and it was mostly treated surgically with resection and excision (82%), or just excision (18%). Seventy percent of our patients underwent reconstruction, while primary closure was done in only 30% of cases. All of the patients underwent neck dissection, including supraomohyoid neck dissection (52%), modified radial neck dissection (40%), and radial neck dissection (8%). Histopathology revealed that 49% had well-differentiated squamous cell carcinoma, 23% had moderately differentiated squamous cell carcinoma, and 28% had poorly differentiated squamous cell carcinoma. Out of the 35 included cases, five patients had died (14%). The primary site was buccal mucosa in all five cases, and surprisingly, three patients also had recurrences post-surgery or post-radiotherapy. We observed that the average rating of overall health and overall QOL at the time of diagnosis was 5.4. After one year of follow-up, the average rating of overall health and overall QOL was found to be 3.4. Conclusion The administration of EORTC QLQ-HN43 was found to be efficacious in our study on patients with OSCC. We could identify baseline data regarding the QOL of our patients treated for OSCC. We have identified critical domains of oral function that need to be focused upon to improve the overall QOL of OSCC patients through adjunctive therapies. We have also identified higher mortality and overall poorer QOL in patients with OSCC involving the buccal mucosa.

Trajectories of participation in daily life among individuals newly diagnosed with cancer: A 5-month longitudinal study.

PURPOSE: To determine how participation in daily life is impacted during the first six months following a new cancer diagnosis and to identify risk factors for participation restrictions. Patient-reported outcomes (PROs) were used to suggest referrals to rehabilitation services. METHODS: Participants (n = 123) were adults (> 18 years) with the newly diagnosed primary brain, breast, colorectal, or lung cancer. PROs were collected at baseline (within 30 days of diagnosis/treatment initiation), two and five months post baseline. Daily life participation was assessed through the community participation indicators (CPI) (score range: 0-1) and patient-reported outcome measurement information system (PROMIS) ability to participate, (score range: 20-80; mean: 50, SD: 10). PROMIS-43 profile was also completed. Linear mixed-effect models with random intercept evaluated change in participation over time. RESULTS: The baseline total sample mean CPI score was 0.56; patients reported mildly impaired participation based on PROMIS scores (baseline: 46.19, 2-month follow-up: 44.81, 5 months: 44.84). However, no statistically significant changes in participation were observed over the study period. Risk factors for lower participation included receiving chemotherapy, lower physical function, higher anxiety and fatigue, and reduction in employment, p < 0.05. PROs indicated that roughly half of the participants may benefit from physical or occupational therapy or mental health support, but only 20-36% were referred by their medical team. CONCLUSION: People newly diagnosed with cancer experience impaired participation, but they are infrequently referred to supportive services such as rehabilitation. The use of PROs to assess participation, physical function, and mental health can promote access to supportive care services by identifying patients who may benefit from rehabilitation beyond those identified through routine clinical care.

Long-term survivorship and results in lower limb arthroplasty: a registry-based comparison study.

INTRODUCTION: Popularity of joint replacement surgery due to ever aging population surges the demand for a proper national joint registry. Our Chinese University of Hong Kong - Prince of Wales Hospital (CUHK-PWH) joint registry has passed the 30th year. The aims of this study are 1) summarize our territory-wide joint registry which has passed the 30th year since establishment and 2) compare our statistics with other major joint registries. METHODS: Part 1 was to review the CUHK-PWH registry. Demographic characteristics of our patients who underwent knee and hip replacements had been summarized. Part 2 was a series of comparisons with registries from Sweden, UK, Australia and New Zealand. RESULTS: CUHK-PWH registry captured 2889 primary total knee replacements (TKR) (110 (3.81%) revision) and 879 primary total hip replacements (THR) (107 (12.17%) revision). Median Surgery time of TKR was shorter than THR. Clinical outcome scores were much improved after surgery in both. Uncemented of hybrid in TKR were most popular in Australia (33.4%) and 40% in Sweden and UK. More than half of TKR and THR patients showed the highest percentage with ASA grade 2. New Zealand reflected the best cumulative percentage survival 20 years after surgery of 92.2%, 76.0%, 84.2% survivorship 20 years after TKR, unicompartmental knee replacement (UKR) and Hip. CONCLUSION: A worldwide accepted patient-reported outcome measure (PROM) is recommended to develop to make comparisons among registries and studies feasible. Completeness of registry data is important and useful to improve surgical performance through data comparisons from different regions. Funding from government on sustaining registries is reflected. Registries from Asian countries have yet to be grown and reported.

Gaining consensus on clinical quality outcomes for eating disorders: Framework for the development of an Australian national minimum dataset.

OBJECTIVES: Eating disorders (EDs) are complex psychiatric illnesses requiring multidisciplinary care across both mental and medical healthcare settings. Currently, no nationally comprehensive, consistent, agreed on or mandated data set or data collection strategy exists for EDs in Australia: thus, little is known about the outcomes of care nor treatment pathways taken by individuals with EDs. InsideOut Institute was contracted by the Australian Government Department of Health to develop a minimum dataset (MDS) for the illness group with consideration given to data capture mechanisms and the scoping of a national registry. DESIGN: A four-step modified Delphi methodology was used, including national consultations followed by three rounds of quantitative feedback by an expert panel. SETTING: Due to social distancing protocols throughout the global SARS-CoV-2 pandemic, the study was conducted online using video conferencing (Zoom and Microsoft Teams) (Step 1), email communication and the REDCap secure web-based survey platform (Steps 2-4). PARTICIPANTS: 14 data management organisations, 5 state and territory government departments of health, 2 Aboriginal and Torres Strait Islander advising organisations and 28 stakeholders representing public and private health sectors across Australia participated in consultations. 123 ED experts (including lived experience) participated in the first quantitative round of the Delphi survey. Retention was high, with 80% of experts continuing to the second round and 73% to the third. MAIN OUTCOME MEASURES: Items and categories endorsed by the expert panel (defined a priori as >85% rating an item or category 'very important' or 'imperative'). RESULTS: High consensus across dataset items and categories led to the stratification of an identified MDS. Medical status and quality of life were rated the most important outcomes to collect in an MDS. Other items meeting high levels of consensus included anxiety disorders, depression and suicidality; type of treatment being received; body mass index and recent weight change. CONCLUSIONS: Understanding presentation to and outcomes from ED treatment is vital to drive improvements in healthcare delivery. A nationally agreed MDS has been defined to facilitate this understanding and support improvements.

Somatic health according to people with severe mental disease.

OBJECTIVES: Patients with schizophrenia have a 15- to 20-year shorter life expectancy compared with the general population. The aim of this study was to explore these patients' perception of their physical health. METHODS: A patient reported outcomes measure (PROM) has been developed by patients with severe mental disease. This survey had to better capture undetected, under-rated and non-prioritized physical domains by traditional routine clinical scales that are important for people who live with mental health disease. These patients have tested the applicability of this PROM with peers with severe mental disease in medical, social and community-based centers from Hauts-de-France. RESULTS: Two and a half years have been required to develop this PROM, to test its applicability to patients with severe mental disease and to analyze the results. The study process has been slowed by the sanitary context induced by the COVID-19 pandemic. Thirty-two questionnaires have been collected by the participants. Despite this low number of data, participants have been satisfied by the results and their experience. The results show that people with severe mental disease consider physical health as a major concern, notably pain and somatic diseases. External factors (such as accessibility to health care and medication) and internal factors (such as self-esteem, cognitive and negative symptoms, sleep, alimentation, and substance use) have been identified as barriers for physical health. CONCLUSIONS: These results support the development of PROMs highlighting personal experience of people with severe mental disease. The data obtained thanks to these measures will allow to build programs to help them to cope with barriers for physical health.

Why women choose self-managed telemedicine abortion in the Netherlands during the COVID-19 pandemic: a national mixed methods study.

BACKGROUND: The COVID-19 pandemic has imposed strict lockdown restrictions that have introduced barriers to in-person abortion clinic visits in the Netherlands. Women on Web (WoW) is a global medical abortion telemedicine service operating outside the formal health sector. AIM: To understand the motivations and perceived barriers women faced when choosing telemedicine abortion outside the formal health sector, and how this was affected by the pandemic. METHODS: 178 women who completed an online consultation on the Dutch WoW website during the period 6 March 2020 to 5 March 2021 were included in this cross-sectional cohort study and exploratory qualitative study. Patient characteristics and motivations were analysed and associated with the severity of COVID-19 restrictions. Email exchanges in which women could further describe their requests were also examined for recurrent clarification of motivations. RESULTS: Women experienced barriers to regular abortion care due to COVID-19 restrictions and had the preference to (1) self-manage their abortion, (2) stay in the comfort of their own home, and (3) keep their abortion private. In particular, women who did not live in the cities where abortion clinics were located experienced barriers to abortion services. As COVID-19 restrictions tightened, it was more frequently mentioned that women sought help from WoW because COVID-19 restrictions and abortion care were not accessible to them in the Netherlands. In the qualitative analysis of email exchanges, the reasons of COVID-19, privacy concerns, and domestic violence were particularly evident. CONCLUSIONS: In the Netherlands, barriers to receiving adequate abortion care were exacerbated for women in vulnerable positions such as being geographically farther away from an abortion clinic, being in a deprived socioeconomic position, or being in an unsafe home situation. Similar to other medical care, abortion care should be deliverable online.

Defining a Patient-Centred Core Outcome Domain Set for the Assessment of Hearing Rehabilitation With Clients and Professionals.

Background: A variety of outcome domains are currently measured for the assessment of hearing rehabilitation. To date, there is no consensus about which outcome domains should be measured, when they should be measured, and how they should be measured. In addition, most studies seeking to develop core outcome sets and measures for hearing rehabilitation services have primarily focussed on the opinions and expertise of researchers, and, to a lesser extent, clinicians, rather than also involving clients of those services. The principles of experience-based co-design suggest that health services, researchers, and policymakers should come together with clients and their families to design health services and define what metrics should be used for their success. Objectives: This study aimed to seek views and consensus from a range of key stakeholders to define which client-centred self-report outcome domains should be measured, when they should be measured, and how they should be measured, in a national publicly funded hearing rehabilitation scheme. In addition, the study aimed to identify current and future potential mechanisms and systems to standardise the collection of data and reporting of outcomes, to enable comparison across clients and hearing service providers. Methods: Two stakeholder groups participated in a three-round online Delphi process: (1) 79 professional stakeholders involved in the delivery of hearing services in Australia, and (2) 64 hearing rehabilitation services' clients identified by not-for-profit consumer organisations. An initial set of in-person workshops scoped the key issues upon which to develop the initial open-ended questions and subsequent Likert-scale statements addressing these issues. These statements were then distributed to both groups in an online survey. The respondent ratings were summarised, and the summary was returned to respondents along with a second round of the survey. This process was then repeated once more. The five most important outcome domains from both groups were then combined, and a consensus workshop of seven professionals and three client advocates agreed on the top four ranked domains. Results: A range of potential outcome domains were identified as relevant indicators of successful hearing rehabilitation. Communication ability, personal relationships, wellbeing, and participation restrictions were identified as a core outcome domain set that should be measured as a minimum for patients receiving hearing rehabilitation. There was little agreement on the preferred timepoints for collection of outcome measures, with respondents expressing the view that this should be established by research once a set of outcome measures has been selected. However, there was broad agreement that measurements of these domains should be collected at baseline (before the provision of hearing rehabilitation) and no earlier than 3 months following the completion of rehabilitation. Potential benefits and issues with the development of a national outcomes database/collection system were also identified and prioritised, with participants highlighting the importance of valid, high-quality, trustworthy, and comprehensive data collection. Conclusion: These results provide a Core Outcome Domain Set for the self-reported evaluation of hearing rehabilitation and provide important background information for the design of methods to implement them across hearing healthcare systems. However, the wide range of outcome domains identified as potentially providing important additional information and the lack of specific measures to address these domains strongly suggest that there is still more research to be done. Ongoing stakeholder engagement will continue to be vital for future implementation. In addition, further research is required to determine the optimal time following hearing rehabilitation to utilise any particular outcome measure.

Measuring family outcomes for young autistic children receiving interventions in China: The structure of the Family Outcomes Survey and predicting variables.

LAY ABSTRACT: Efforts to measure, document, and monitor family outcomes can be helpful to practitioners in developing and delivering effective and sustainable interventions. Researchers have developed the Family Outcomes Survey, Form A, for measuring the outcomes experienced by families of children in the early intervention/early childhood special education system. Little has been reported on how well the five outcomes on the Family Outcomes Survey, Form A describe the experiences and expectations of families of autistic children in China. We conducted a survey using the Family Outcomes Survey, Form A, Chinese version with 467 caregivers of young autistic children in China. First, the five-outcome structure of the Family Outcomes Survey, Form A seemed to be appropriate for measuring family outcomes of autistic children in China. We also found that the Chinese caregivers of autistic children seemed to give general lower ratings on all five outcomes on the Family Outcomes Survey, Form A as compared to caregivers of children in early intervention/early childhood special education in Western countries like the United States and Australia. Furthermore, caregivers' ratings on the five Family Outcomes Survey, Form A outcomes seemed to be related to their educational attainment, employment status, family income level, and how much time caregivers spent with their autistic child. This study supported the use of the Family Outcomes Survey, Form A, Chinese version with families of autistic children in China. We also discussed how the coronavirus disease 2019 pandemic could have impacted the family outcomes as reported by the Chinese caregivers.

Benefit of burosumab in adults with X-linked hypophosphataemia (XLH) is maintained with long-term treatment.

OBJECTIVES: To report the impact of continued burosumab treatment on clinical laboratory tests of efficacy, patient-reported outcomes (PROs) and ambulatory function in adults with X-linked hypophosphataemia who continued from a 96-week phase 3 study into a 48-week open-label extension. METHODS: Eligible participants from the phase 3 study continued on the burosumab regimen received at the end of the phase 3 study for a further 48 weeks (n=31). Some (not all) received compassionate burosumab treatment between the two studies (a period of 6-18 months). The primary efficacy outcome was fasting serum phosphate concentration; secondary outcomes were serum 1,25 dihydroxyvitamin D concentration, renal phosphate reabsorption, PROs and ambulatory function. RESULTS: Improvements in fasting serum phosphate, serum 1,25 dihydroxyvitamin D and renal phosphate reabsorption at 96 weeks were maintained through the 48-week extension. Improvements were also maintained in stiffness and physical function measured using the Western Ontario and McMaster Universities Osteoarthritis Index, pain and fatigue endpoints measuring using the Brief Pain Inventory short-form and Brief Pain Inventory, respectively, and in ambulatory function (6-Minute Walk Test).A post-hoc exploratory analysis exploring outcomes in participants who discontinued burosumab treatment between the studies (n=7) and those who received at least one dose (n=23) indicated that the benefits of burosumab on clinical laboratory tests of efficacy, PROs and ambulatory function may be lost when treatment is interrupted but recover over time when treatment is reinstated. CONCLUSION: Continued treatment with burosumab appears necessary for sustained clinical benefit. TRIAL REGISTRATION NUMBERS: Phase 3: NCT02526160; open-label extension: NCT03920072.

Impaired physical function in patients with idiopathic inflammatory myopathies: results from the multicentre COVAD patient-reported e-survey.

OBJECTIVES: The assessment of physical function is fundamental in the management of patients with idiopathic inflammatory myopathies (IIMs). We aimed to investigate the physical function of patients with IIMs compared with those with non-IIM autoimmune rheumatic diseases (AIRDs) utilizing Patient-Reported Outcome Measurement Information System (PROMIS) Physical Function (PF) data obtained in the COVAD study, an international self-reported e-survey assessing the safety of COVID-19 vaccines in AIRDs. METHODS: Demographics, AIRD diagnosis, disease activity, and PROMIS PF short form-10a data were extracted from the COVAD database. PROMIS PF-10a scores were compared between disease categories and stratified by disease activity. Factors affecting PROMIS PF-10a scores other than disease activity were identified by multivariable regression analysis in patients with inactive disease. RESULTS: 1057 IIM patients, 3635 non-IIM AIRD patients, and 3981 healthy controls (HCs) responded to the COVAD e-survey from April to August 2021. Using a binomial regression model, the predicted mean of PROMIS PF-10a scores was significantly lower in IIM patients compared with non-IIM AIRD patients or HCs (36.3 [95% confidence interval (CI) 35.5-37.1] vs 41.3 [95%CI 40.2-42.5] vs 46.2 [95%CI 45.8-46.6], P < 0.001), irrespective of disease activity. The independent factors for lower PROMIS PF-10a scores in patients with inactive disease were older age, female, longer disease duration, and a diagnosis of inclusion body myositis or polymyositis. CONCLUSION: Physical function is significantly impaired in IIMs compared with non-IIM AIRDs or HCs, even in patients with inactive disease. Our study highlights a critical need for better strategies to minimize functional disability in patients with IIMs.

The Prevalence of COVID-19 Fog and the Impact on Quality of Life After SARS-CoV-2 Infection (QoL-COVID): A Cross Sectional Study.

INTRODUCTION: Coronavirus has an impact on both the physical and mental health of individuals. The literature regarding the patient's health status post-SARS-CoV-2 is still scarce with limited data on the prevalence of residual symptoms and quality of life (QoL) after the infection. The aim of this study was to understand the impact of SARS-CoV-2 on patient QoL, and remaining symptoms. MATERIAL AND METHODS: Single center cross-sectional study of patients who had been admitted to our COVID-19 ward between March 2020 and March 2021. By applying a QoL questionnaire (EQ-5D-5L) we assessed the overall sample, at three time points and in different groups of patients: those admitted to the intensive care unit (ICU) and the elderly. RESULTS: A total of 125 participants were included in our study. Most patients who were admitted had a severe course of disease (51%), with 22% of admissions to the ICU, with 8% requiring prone ventilation, 10% experiencing thrombotic complications and 18% of nosocomial infections throughout the admission. As for persistent symptoms related with COVID-19 fog, the most frequent were fatigue (57%), memory loss (52%) and insomnia (50%). Regarding QoL, the average decrease was 0.08 ± 0.2 in the index and 8.7 ± 19 in the Visual Analogue Scale (VAS). The QoL index decrease correlated with age, chronic obstructive pulmonary disease, asthma and heart failure, and all persistent symptoms, significantly. QoL VAS correlated significantly with fatigue, mood changes, difficulty concentrating and memory loss. The decrease in QoL and the persistent symptoms remained overall stable over the three time points. The ICU group showed no statistically significant difference in QoL, but the most frequently persistent symptoms were mood changes and attention disturbances. However, the elderly experienced a worsening in QoL expressed by index (0.69 ± 0.3 vs 0.8 ± 0.2, p-value = 0.01). CONCLUSION: A decrease in QoL was observed following SARS-CoV-2 infection, correlating with both chronic conditions and persistent symptoms. The lack of difference through time points of both QoL and persistent symptoms suggests a long-standing effect.

Sensitivity to treatment and score bands of the Infants and Toddlers Dermatology Quality of Life questionnaire.

Background: The Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire is the first dermatology-specific proxy health related QoL instrument for children from birth to 4 years. Score meaning bands and the sensitivity to successful therapeutic intervention are important to interpret the clinical meaning of an instrument. Objective: The aim of the present study was to check the sensitivity to successful therapeutic intervention and establish score bands of the InToDermQoL questionnaire. Methods: Parents or grandparents of 424 children with skin diseases from Spain, Malta, Croatia, Romania, Greece, and Ukraine filled in national language versions of the InToDermQoL questionnaire. Disease severity of children with atopic dermatitis was assessed by SCORAD (Scoring atopic dermatitis). Cohen's d was used to assess the responsiveness of the instrument. Results: The mean total InToDermQoL scores significantly decreased after treatment. Severity grading of the SCORAD scores gave stratification of the InToDermQoL severity grades based on 95% confidence intervals. Scores below a calculated minimal important difference of 2 corresponded to no effect on patient's health related QoL. Limitations: Score banding may be slightly different across patient population and study context. Conclusion: All 3 age-specific versions of the InToDermQoL questionnaire showed sensitivity to treatment. Score bands for the InToDermQoL questionnaire have been established.

Moving towards patient-reported outcomes in routine clinical practice: implementation lessons from the BREAST-Q.

PURPOSE: Longitudinal, routine utilization of patient-reported outcome measures (PROMs) in clinical care has been challenging. The purpose of this study is to describe a quality improvement initiative to improve patient engagement with the BREAST-Q, a gold-standard PROM for breast reconstruction. METHODS: In 2011, we implemented the BREAST-Q as part of routine care. In 2018, we began a quality improvement initiative to increase BREAST-Q patient participation. The BREAST-Q was administered at every clinic visit via an institutional patient portal or an in-clinic tablet; digital dashboard technologies were used to improve workflow integration, real-time accountability, and immediate data availability at clinic visits. High clinical staff engagement was encouraged by assigning "BREAST-Q Champions." BREAST-Q completion data and patient characteristics were examined to understand non-response to the assessment. RESULTS: Following quality improvement, the average annual BREAST-Q completion rate increased from 42.8% in 2011-2017 to 87.6% in 2019, the last full year of our study period. High completion rates were maintained January-July 2020; however, a significantly larger proportion of BREAST-Qs were completed at home in 2020 versus the same period in 2019 (49.7 vs. 38.8%, p < 0.001), potentially due to the COVID-19 pandemic. Compared with non-responders, responders were younger (49.7 vs. 52.2 years, p < 0.001), more likely to be white (76.9 vs. 73.6%, p < 0.001), and had private insurance (79.4 vs. 69.8%, p < 0.001). CONCLUSION: Our quality improvement initiative successfully increased routine completion of the BREAST-Q. Similar implementation techniques may prove beneficial at other institutions interested in incorporating PROMs into routine care.

Feasibility of using a patient-reported outcome measure into clinical practice following pediatric liver transplantation: The Starzl Network experience.

BACKGROUND: Patient-reported outcome measures (PROMs) are not routinely used in clinical care by pediatric liver transplant (LT) teams. The Starzl Network for Excellence in Pediatric Transplantation (SNEPT) assessed feasibility of using a disease-specific Quality of Life (QoL) questionnaire in the ambulatory setting at 10 SNEPT sites. METHODS: A mixed methods feasibility project assessing administration processes, barriers, and user experiences with the Pediatric Liver Transplant Quality of Life (PeLTQL) tool. Iterative processes sought stakeholder feedback across four phases (Pilot, Extended Pilot, Development of a Mobile App PeLTQL version, and Pilot App use). RESULTS: A total of 149 patient-parent dyads completed the PeLTQL during LT clinic follow-up. Clinicians, parents, and patients evaluated and reported on feasibility of operationalization. Only two of 10 SNEPT sites continued PeLTQL administration after the initial two pilot phases. Reasons include limited clinical time and available personnel aggravated by the COVID-19 pandemic. In response, a mobile application version of the PeLTQL was initiated. Providing PeLTQL responses electronically was "very easy" or "easy" as reported by 96% (22/23) parents. CONCLUSIONS: Administration of a PROM into post-pediatric LT clinical care was feasible, but ongoing utilization stalled. Use of a mobile app towards facilitating completion of the PeLTQL outside of clinic hours may address the time and work-flow barriers identified.