Item Completion Rates Research Articles

Development and validation of a new tool to assess quality of decision-making by older children and parents about research participation

ObjectiveEffective decision-making is crucial for children and young people's trial participation, but specific tools to measure it are lacking. The TRECA (TRials Engagement in Children and Adolescents) Decision-Making Questionnaire (DMQ) was developed to fill this gap and has been evaluated for reliability and validity MethodsWe created the TRECA Decision-Making Questionnaire, based on similar measures for adults, and recruited participants through seven Studies-Within-a-Trial (SWATs). Participants were randomly assigned to receive trial information either as a printed Participant Information Sheet or Multimedia Information, or both, and asked to complete the DMQ. We calculated item completion rates, item-remainder statistics and Cronbach’s Alpha, and conducted factor analysis. Results549 participants (433 parents/guardians, 116 older children) completed a DMQ. It had high completion rates and internal consistency (Alpha = 0.88 for parents/guardians and 0.84 for older children) and moderate to high inter-item correlations. The DMQ had a single factor accounting for 53 % of variance. ConclusionsThe TRECA DMQ is a useful tool for evaluating research participation decisions in older children, as well as parents and guardians. Practice implicationsOur study suggests that the TRECA DMQ can be used to assess the quality of decision-making about trials in parents, guardians and older children.

Assessment of Disaster Preparedness at the Household Level in a Pediatric Cardiology Clinic Population.

Natural and human-provoked disasters pose serious health risks to children, particularly children and youth with special healthcare needs, including many cardiology patients. The American Academy of Pediatrics (AAP) provides preparedness recommendations for families, but little is known about recommendation adherence. Caregivers of children seen in a pediatric cardiology clinic network were recruited to complete an electronic survey. Participants self-reported child medical history and their household's implementation of AAP recommended disaster preparedness items. Families received a link to AAP resources and a child ID card. Data were analyzed using descriptive statistics with Fisher's exact and Wilcoxon rank sum tests. 320 caregivers participated in the study, of whom 124 (38.8%) indicated that their child has a diagnosed cardiac condition, and 150 (46.9%) indicated that their child had special healthcare needs. The average preparedness item completion rate was 70.7% for household preparedness, 40.1% for reunification preparedness, and 26.3% for community preparedness. Households of children with medical needs had similar rates of preparedness compared to overall rates. Of all respondents, 27.8% previously received disaster preparedness resources, 67.7% would like resources on discussing disaster preparedness, and 93.0% intend to talk with their household about disaster preparedness after completing the survey. These results demonstrate a gap between AAP recommendations and household-level disaster preparedness, including patients with cardiac conditions and those with special healthcare needs. Families expressed that they were interested in getting resources for disaster preparedness. Pediatric cardiologists may consider asking about disaster preparedness and providing disaster preparedness resources tailored to the needs of their patients.

Getting More Bang for Your Buck on MTurk

Over the last several years, researchers have increasingly engaged online panels such as Amazon’s Mechanical Turk (MTurk) and Prolific to distribute surveys for academic research. This trend has sparked much debate over the quality of data generated from such panels. Thus far, researchers have overwhelmingly blamed panel participants for quality issues (e.g. worker distraction or deception); very little attention has been paid to the role that researchers may be playing in the matter. This paper considers the relation between the design and distribution of online surveys and data quality. In study 1, we review a sample of 5 Qualtrics surveys retrieved from the Open Science Foundation (OSF) platform, summarizing their strengths and weaknesses to identify common characteristics of survey quality—or lack thereof. In study 2, we empirically test whether three survey quality characteristics (title comprehensibility, device compatibility, and scale quality) affect sample composition (age, gender, ethnicity, education level, employment status, household income, or HITS completed) and data quality (attention check pass rate, item completion rate, and survey submission rate.) We also look more broadly for differences in means among responses between conditions. Our results indicate that title comprehensibility does not affect sample composition; device compatibility has a significant effect on attention check pass rates and means for multiple items; and scale quality has a significant effect on the reported level of psychological safety in participants’ place of employment. We conclude with a discussion of the results, post-hoc observations, and recommendations for researchers conducting online surveys.

664 EXPLORING THE FEASIBILITY OF THE INTERRAI CHECK-UP FORM (SELF-REPORTED) IN OLDER PEOPLE LIVING WITH FRAILTY IN THE COMMUNITY

Abstract Introduction Identifying the holistic needs of community dwelling older people is an essential component of clinical care. Current assessment instruments are limited by a narrow medical view and varied language use, referring to identical clinical concepts in different ways. The interRAI family of assessments have been designed to integrate health information across multiple settings. The interRAI Check-Up (Self-Reported) was designed to support the management of older adults with multi-morbidities in the community setting but has not yet been widely tested in clinical practice in the United Kingdom. Objectives To investigate the extent to which the self-reported interRAI Check-Up tool could be used to assess older patients within the NHS. Methods Patients attending two outpatient clinics were recruited to complete the interRAI Check-Up which comprised of 109 items. Time taken for tool completion and prompts needed were recorded. Patient and individual item completion rates were calculated and assessed for floor or ceiling effects. Patient views on completing the tool were collected as field notes. Clinic staff completed a questionnaire exploring their views of the tool. Thematic analysis was carried out on patient and staff data. Results From 43 patient participants, the median time for tool completion was 25 minutes. The median patient completion rate was 96.6% and item completion rate was 97.1%. Of 105 analysed items, 55 items showed a ceiling or floor effect. The tool was found to comprehensively cover holistic needs but its length and complexity of structure was found to be a barrier during busy clinical practice. Conclusion The Self-reported interRAI Check-Up tool was found to be feasible for use in the outpatient setting. Further research into which patient groups and locations would benefit most is recommended as well as how to practically implement the assessment into clinical practice within the NHS.

Validity and reliability of the Mini-Osteoarthritis Knee and Hip Quality of Life scale in Turkish population.

Objectives This study aims to investigate the validity and reliability of the Turkish version of the Mini-Osteoarthritis Knee and Hip Quality of Life (Mini-OAKHQoL) scale developed to assess the quality of life (QoL) in patients with knee and/or hip osteoarthritis.Patients and methods Between May 2018 and May 2020, a total of 83 patients (11 males, 72 females; mean age: 58.1±10.0 years; range, 39 to 81 years) with knee and/or hip osteoarthritis were included. Demographic, clinical, and survey data (Mini-OAKHQoL, Nottingham Health Profile, Short Form-36, Western Ontario and McMaster Universities Osteoarthritis Index, Lequesne Index, and Visual Analog Scale of pain intensity) were recorded. Missing data, floor effect, and ceiling effect were calculated. For reliability analysis, internal consistency and test-retest reliability were discovered. Face, content, convergent, and divergent validities were applied.Results Among the patients, 52 (62.65%) had knee osteoarthritis, 26 (31.32%) had hip osteoarthritis, and five (6.02%) had both. Mini-OAKHQoL had a good face and content validity. The average item completion rate was 96.9%, with the time needed to perform was about 4 min. None of the subscales of Mini-OAKHQoL presented floor or ceiling effect, with a good range of responses. The Cronbach alpha coefficients and intraclass correlation coefficient (ICC) analysis of the subscales ranged from 0.927 to 0.676 and 0.987 to 0.843, respectively. Regarding convergent validity, the physical activities, mental health, and pain subscales of Mini-OAKHQoL had moderate to high correlations with the topic-related subset of the other QoL surveys. There were no or weak correlations between Mini-OAKHQoL and non-QoL parameters, indicating its divergent validity.Conclusion The Turkish version of Mini-OAKHQoL is a valid, reliable, simple, practical, accurate, completable, comprehensive, and disease-specific self-report instrument to assess QoL in patients with knee and/or hip osteoarthritis.

Evaluation of the Hindi version of the London Measure of Unplanned Pregnancy among pregnant and postnatal women in urban India

BackgroundValid and reliable measures such as London Measure of Unplanned Pregnancy (LMUP) are imperative for understanding fertility-related behaviors and estimating unintended pregnancy. The aim of this study was to validate the LMUP in the Hindi language for a wider reach in India.MethodsAn interviewer administered version of the LMUP was translated and pretested in Hindi. The LMUP was field tested with married women in the reproductive age group across forty informal settlements in Mumbai in the post intervention census of a cluster randomized control trial to improve the health of women and children. Analyses involved the full sample and sub-groups according to time-from-conception. Reliability (internal consistency) was assessed using Cronbach’s alpha, inter-item correlations, and item-rest correlations. Construct validity was assessed by hypothesis testing and confirmatory factor analysis.Results4991 women were included in the study (1180 were pregnant, 2126 in their first- and 1685 in their second postnatal year). LMUP item completion rates were 100 % and the full range of LMUP scores was captured. Reliability: the scale was internally consistent (Cronbach’s α = 0.84), inter-item correlations were positive, and item-rest correlations were above 0.2 for all items except item six (0.07). Construct validity: hypotheses were met, and confirmatory factor analysis showed that a one-factor model was a good fit for the data, confirming unidimensional measurement. The sub-group analysis (by pregnant, first-, and second postnatal year) showed that the psychometric properties of the LMUP were similar across the groups. In terms of LMUP scores, the women in the postnatal groups were very slightly, but significantly, more likely to have an LMUP score of 10 + compared to pregnant women; the difference between the first and second postnatal year was not significant.ConclusionsThe Hindi LMUP is valid and reliable measure of pregnancy intention that may be used in India.Trial RegistrationThis study is registered with ISRCTN, number ISRCTN56183183, and Clinical Trials Registry of India, number CTRI/2012/09/003004.

The Development of a Digital Patient-Reported Outcome Measurement for Adults With Chronic Disease (The Parsley Symptom Index): Prospective Cohort Study.

BackgroundThe monitoring and management of chronic illness has always been a challenge. Patient-reported outcome measures (PROMs) can be powerful tools for monitoring symptoms and guiding treatment of chronic diseases, but the available PROM tools are either too broad or too disease specific for the needs of a primary care practice focused on longitudinal care.ObjectiveIn this study we describe the development and preliminary validation of the Parsley Symptom Index (PSI).MethodsThis prospective cohort study took place from January 5, 2018, to June 05, 2020, among a sample of 4621 adult patients at Parsley Health. After a review of literature, followed by binning and winnowing of potential items, a 45-item PROM that also served as a review of systems (ROS) was developed. The PSI was deployed and completed by patients via an online portal. Construct and face validity was performed by clinicians, tested on patients, and feasibility was measured by response rate, completion rate, and percentage of missing data.ResultsThe response rate for 12,175 collected PSIs was 93.72% (4331/4621) with a 100% item completion rate. A confirmatory factor analysis confirmed the model structure was satisfactory by a Comparative Fit Index of 0.943, Tucker–Lewis index of 0.938, and root mean square error of approximation of 0.028.ConclusionsA 45-item ROS-style PROM designed to capture chronic disease symptoms was developed, and preliminary validation suggests that the PSI can be deployed, completed, and helpful to both patients and clinicians.

Culinary nutrition course equips future physicians to educate patients on a healthy diet: an interventional pilot study

BackgroundPoor-quality diet is associated with one in five deaths globally. In the United States, it is the leading cause of death, representing a bigger risk factor than even smoking. For many, education on a healthy diet comes from their physician. However, as few as 25% of medical schools currently offer a dedicated nutrition course. We hypothesized that an active learning, culinary nutrition experience for medical students would improve the quality of their diets and better equip them to counsel future patients on food and nutrition.MethodsThis was a prospective, interventional, uncontrolled, non-randomized, pilot study. Ten first-year medical students at the Wayne State University School of Medicine completed a 4-part, 8-h course in culinary-nutritional instruction and hands-on cooking. Online assessment surveys were completed immediately prior to, immediately following, and 2 months after the intervention. There was a 100% retention rate and 98.8% item-completion rate on the questionnaires. The primary outcome was changes in attitudes regarding counselling patients on a healthy diet. Secondary outcomes included changes in dietary habits and acquisition of culinary knowledge. Average within-person change between timepoints was determined using ordinary least squares fixed-effect models. Statistical significance was defined as P ≤ .05.ResultsParticipants felt better prepared to counsel patients on a healthy diet immediately post-intervention (coefficient = 2.8; 95% confidence interval: 1.6 to 4.0 points; P < .001) and 2 months later (2.2 [1.0, 3.4]; P = .002). Scores on the objective test of culinary knowledge increased immediately after (3.6 [2.4, 4.9]; P < .001) and 2 months after (1.6 [0.4, 2.9]; P = .01) the intervention. Two months post-intervention, participants reported that a higher percentage of their meals were homemade compared to pre-intervention (13.7 [2.1, 25.3]; P = .02).ConclusionsAn experiential culinary nutrition course may improve medical students’ readiness to provide dietary counselling. Further research will be necessary to determine what effects such interventions may have on the quality of participants’ own diets.

Collaborative Case Review: A Systems-Based Approach to Patient Safety Event Investigation and Analysis.

ObjectivesThe aims of the study were to assess a system-based approach to event investigation and analysis—collaborative case reviews (CCRs)—and to measure impact of clinical specialty on strength of action items prescribed.MethodsA fully integrated CCR process, co-led by radiology and an institutional patient safety program, was implemented on November 1, 2017, at our large academic medical center for evaluating adverse events involving radiology. Quality and safety teams performed reviews for events identified with other departments who maintained their existing processes. This institutional review board–approved study describes the program, including percentage of CCR from an institutional Electronic Safety Reporting System, percentage of CCR per specialty, and action item completion rates and strength (e.g., stronger) based on a Veterans Administration–designed hierarchy. χ2 analysis assessed impact of clinical specialty on strength of action prescribed.ResultsSeventy-three CCR in 2018 generated 260 action items from 10 specialties. Seventy percent (51/73) were adverse events identified through Electronic Safety Reporting System. The specialty most frequently associated with CCR was radiology (16/73, 22%). Most action items (204/260, 78%) were completed in 1 year; stronger action items were completed in 71 (27%) of 260. Radiology was responsible for 61 action items; 25 (41%) of 61 were strong versus all other specialties with strong action items in 46 (23%) of 199 (P < 0.01).ConclusionsAn integrated multispecialty CCR co-led by the radiology department and an institutional patient safety program was associated with a higher proportion of CCR, stronger action items, and higher action item completion rate versus other hospital departments. Active engagement in CCR can provide insights into addressing adverse events and promote patient safety.

Use of motivational techniques to enhance unpaid caregiver engagement in a tailored skills training intervention

Objectives The Helping Invested Families Improve Veterans’ Experiences Study (HI-FIVES) evaluated a skills training program to support family caregivers of cognitively or functionally impaired persons. HI-FIVES demonstrated sustained improvements in caregivers’ and patients’ experiences of VA care. The aim of this distinct, secondary qualitative study was to explore the potential processes related to the individual tailored skills-based telephone training underpinning HI-FIVES intervention effects. We explored topics caregivers selected, characteristics of action items created, patterns of action or inaction, and barriers to action item completion across topics. Methods Qualitative data was analysed from 118 dyads randomized into the HI-FIVES intervention which included three weekly facilitated training calls covering five education topics and action items developed by caregivers for each topic. Qualitative analysis of text responses to questions from the training calls was used. Results Three of the top four most selected topics were caregiver-oriented and caregivers created an action item most often for self-care topics. Caregiver-oriented topics also had the highest action item completion rates. The majority of action items created met SMART guidelines for goal setting and simple structure. With regard to barriers to action item completion, caregivers commonly reported still contemplating/pending. Conclusion Our findings identify motivational interviewing as an effective technique to identify critical intervention content and address barriers to achieving caregiving goals. We suggest that caregivers felt more empowered to create and complete an action item when they had more control over completing the action item, such as in topics related to their own self-care.

Adaptation and preliminary testing of the registered nursing forecasting (RN4CAST) nurse survey for use in the ambulatory chemotherapy setting.

This study aimed to adapt the Registered Nurse Forecast (RN4CAST) nurse survey making it appropriate to assess the working environments of ambulatory chemotherapy nurses, specifically focusing on care left undone. A two-phase approach was used. Firstly, cognitive interviews were conducted to adapt role specific sections of the RN4CAST nurses survey. The interviews were analysed to assess comprehension, retrieval, judgement and response processes to create the RN4CAST-chemotherapy assessment tool (CAT) survey. Secondly, a single centre feasibility study was undertaken to assess acceptability of the RN4CAST-CAT survey in an ambulatory chemotherapy setting. Results of the feasibility study were analysed using descriptive statistics and compared with routinely collected patient experience data. The cognitive interviews (n=6) resulted in important amendments to the RN4CAST-CAT. Response rate to the feasibility study was acceptable at 57% (n=12) and item completion rate was good (on average only 1 response missing per item). On average nurses looked after nine patients per shift, administered seven chemotherapy treatments and worked an hour and 10min over their contracted time. Main areas of care left undone were related to verbal communication with patients and assessing patient comorbidities and toxicities. We were able to adapt the RN4CAST to make it suitable for use in the ambulatory chemotherapy setting. Our study offers preliminary evidence that the RN4CAST-CAT and methodology are feasible and acceptable within the ambulatory chemotherapy setting. Larger scale testing is now required and if validated the RN4CAST-CAT has the potential to provide useful insights into the impact of nursing workload on staff experience, patient care and outcomes on ambulatory chemotherapy settings.

SAT-131 EVALUATION OF RENAL DATA QUALITY: A PREPARATORY STEP FOR A RENAL REGISTRY IN AN ISN/SRC CENTER, IN PORT HARCOURT, NIGERIA

The impact of renal registries that promote service planning, disease management, quality improvement, and research is dependent on the quality of baseline data. Inadequate baseline data collection tools and the low utilization of electronic Health Information Management Systems (eHIMs) are key challenges to the development of renal registries in Africa as stated by the African Regional Association of Nephrology (AFRAN). This state of affairs prompted the baseline assessment of renal data quality and the development of a structured data collection tool as a prerequisite for the commencement of a community-level primary care renal service and the establishment of the local renal registry at an ISN/SRC center, at the University Port Harcourt Teaching Hospital, Nigeria, Patients' data were extracted from physical records for the period 2015 to 2018 and entered on renal registry template based on a modified WHO Steps instrument proposed by the South Africa Medical Research Council. CKD Africa Collaboration. The tool had 10 domains of Demographic and general information (DGI), Behavioural measurements (BM), Cardiovascular risk, CKD Risk and Past medical history (CVCKRisk), Physical measurements (Anthropometric and metabolic) (PM), Measures of kidney function (MKF), Measures of chronic kidney disease impact (CKDI), Renal Imaging (RI), CKD Course and outcome (CKDCO), Renal Histology (RH) and Renal Replacement Therapy (RRT) with a total of 67 items. Three domains and 20 items were excluded in the analysis which focused on the data quality dimension of completeness. There were 1099 patient entries, with an overall data completeness range of 14.16 – 99.42%. The range and mean of data completeness in percentages (%) for 7 domains were DGI: 76.50 – 99.42, 87.92±13.18, BM: 95.18 - 96.79, 96.01±0.81, CVCKRisk: 16.93 - 93.43, 81.26±24.78, PM: 35.62 -94.74, 76.94±24.02, MKF: 31.97 - 77.52, 54.33 ±23.66, CKDI: 14.16 - 77.52, 48.06 ±24.93, RI: 33.58 - 38.98, 36.5840 ±2.66 respectively. There were significant differences in the mean completeness within and across the domains. The BM Domains had the highest mean completion rate of 96.01±0.81%, while the highest item completion rate of 99.42% and 99.27% was attained in demographic information items such as gender and age respectively. The lowest rates of 31.97%, 14.16% and 33.58% respectively were recorded in MKF, CKDI and RI items such as urine albumin, mineral bone disease parameters, and renal imaging measurements. There are significant gaps in data completeness with the current data tools used in the facility. The poor data quality limits the integrative capacity of the renal data from this center to other sub-regional and national registries. The lack of a structured data tool also limits the implementation of standardized community based renal care service. In response to this assessment, a structured data collection and patient assessment tool were developed to improve data quality and make the establishment of a local registry achievable. It is advocated that the assessment of facility data quality and the development of structured data tools are important perquisites in promoting standardized community based renal care, renal data quality, and successful registry development in technologically challenged environments.

Outcomes of a primary care mental health implementation program in rural Rwanda: A quasi-experimental implementation-effectiveness study.

To address the know-do gap in the integration of mental health care into primary care in resource-limited settings, a multi-faceted implementation program initially designed to integrate HIV/AIDS care into primary care was adapted for severe mental disorders and epilepsy in Burera District, Rwanda. The Mentoring and Enhanced Supervision at Health Centers (MESH MH) program supported primary care-delivered mental health service delivery scale-up from 6 to 19 government-run health centers over two years. This quasi-experimental study assessed implementation reach, fidelity, and clinical outcomes at health centers supported by MESH MH during the scale up period. MESH MH consisted of four strategies to ensure the delivery of the priority care packages at health centers: training; supervision and mentorship; audit and feedback; and systems-based quality improvement (QI). Implementation reach (service use) across the 19 health centers supported by MESH MH during the two year scale-up period was described using routine service data. Implementation fidelity was measured at four select health centers by comparing total clinical supervisory visits and checklists to target goals, and by tracking clinical observation checklist item completion rates over a nine month period. A prospective before and after evaluation measured clinical outcomes in consecutive adults presenting to four select health centers over a nine month period. Primary outcome assessments at baseline, 2 and 6 months included symptoms and functioning, measured by the General Health Questionnaire (GHQ-12) and the World Health Organization Disability Assessment Scale (WHO-DAS Brief), respectively. Secondary outcome assessments included engagement in income generating work and caregiver burden using a quantitative scale adapted to context. A total of 2239 mental health service users completed 15,744 visits during the scale up period. MESH MH facilitated 70% and 76% of supervisory visit and clinical checklist utilization target goals, respectively. Checklist item completion rates significantly improved overall, and for three of five checklist item subgroups examined. 121 of 146 consecutive service users completed outcome measurements six months after entry into care. Scores improved significantly over six months on both the GHQ-12, with median score improving from 26 to 10 (mean within-person change 12.5 [95% CI: 10.9-14.0] p< 0.0001), and the WHO-DAS Brief, with median score improving from 26.5 to 7 (mean within-person change 16.9 [95% CI: 14.9-18.8] p< 0.0001). Over the same period, the percentage of surveyed service users reporting an inability to work decreased significantly (51% to 6% (p < 0.001)), and the proportion of households reporting that a caregiver had left income-generating work decreased significantly (41% to 4% (p < 0.001)). MESH MH was associated with high service use, improvements in mental health care delivery by primary care nurses, and significant improvements in clinical symptoms and functional disability of service users receiving care at health centers supported by the program. Multifaceted implementation programs such as MESH MH can reduce the evidence to practice gap for mental health care delivery by nonspecialists in resource-limited settings. The primary limitation of this study is the lack of a control condition, consistent with the implementation science approach of the study. ISRCTN #37231.

653P - Discovery and diagnosis of metastatic colorectal cancer (mCRC) in the real world: Final results from a European survey

BackgroundDigestive Cancers Europe (DiCE), a European digestive cancers patient organisation, planned and carried out an international survey on the Unmet Needs of Patients Living with mCRC. The aim was to better understand the challenges, needs, and health-related quality of life (HRQoL) of those living with mCRC in 15 European countries. MethodsNurses and clinicians together with DiCE partner organisations recruited patients to fill in the survey (online or paper). Data collected included information on demographics, the disease discovery, diagnosis and treatment and support received. Questions on discovery and diagnoses covered reasons for contacting physicians, symptoms experience, the lag time between first symptoms and seeking clinical help, and misdiagnosis. Single data entry from paper surveys was executed by DiCE. Data were analyzed descriptively. Results883 surveys were collected and analyzed: Austria (8), Belgium (65), Cyprus (57), Hungary (103), Ireland (3), Italy (36), Germany (22), Netherlands (40), Norway (1), Poland (163), Portugal (24), Serbia (170), Spain (112), Turkey (26) and the UK (53). Item completion rates were high. Mean time with mCRC was 2yrs. Diagnosis was established at a routine visit for 20%; at visits due to CRC-related or non-CRC related symptoms (41% and 26%); or at emergency hospitalization (19%); with only 5% through screening. CRC symptom awareness was very low: on average only 28% of patients knew before what symptoms CRC may present. Although 39% of patients waited <1 month from observing symptoms, 31% waited 1–3 months, 12% waited 3–6 months and the rest even longer. Similar time distribution was observed for diagnosis. Misdiagnoses was indicated by 25%. Patient satisfaction was relatively high: 43% of patients were very satisfied with the process of establishing a diagnosis, with large variation across countries. ConclusionsAwareness of patients with CRC is low, with few respondents recognising symptoms and seeking help without delay. Misdiagnosis levels are still high. Despite the existence of various screening in surveyed countries, awareness and compliance rates are low. The conditions of the discovery of mCRC need to be improved both on the patient awareness and the clinical side. Legal entity responsible for the studyEuropaColon / Digestive Cancers Europe. FundingMerck, BMS, Sandoz and Sirtex. DisclosureAll authors have declared no conflicts of interest.

Implementation of Patient-Reported Outcomes (PROMs) from specialist pain clinics in England and Wales: Experience from a nationwide study.

Evaluating outcomes in routine clinical practice is a significant challenge for specialist pain clinics due to the complexity of interventions provided and the subjective nature of pain. This study reports findings from implementation of Patient Reported Outcomes (PROMs) in pain clinics in England and Wales between 2011 and 2013. A paper-based questionnaire was administered at a first appointment in participating centres. This assessed quality of life, experience of health care and health care usage with postal follow-up at 6 and 12months by the research team. Feasibility was assessed in terms of response rates, completion rates and outcomes. Ninety-one (56%) clinics participated, entering 9,588 patients (19% of those eligible). For responders, there was a 92% item completion rate. The dropout rate was high, 46% and 19% returned questions at 6 and 12months, respectively. Quality of life at baseline was low, with a mean EQ5D-3L Time Trade Off value of 0.32. Amongst responders at 12months, 92% continued to experience significant pain. For those with planned discharges 30% achieved the Minimal Important Change for quality of life. Nonetheless, 70% reported positive experiences of care. Patients attending UK pain clinics report an extraordinarily poor quality of life and difficulty with understanding their condition. Problems with PROMs implementation included initial recruitment, follow-up response rates, classification systems and benchmarking. Successful implementation should include use of electronic data capture, feedback and focus on gradual improvement. To achieve this would require extended periods of funding. No nationwide evaluation of the effectiveness of specialist pain clinics had previously been attempted. Comparison of patient outcomes from services enables improvement. This work provides a platform to improve methods of routine PROMs capture in pain clinics, measure clinical effectiveness and identify areas for potential research.

A pilot evaluation of the expanded prostate cancer index composite for clinical practice (EPIC-CP) tool in Ontario.

To introduce the EPIC-CP symptom screening tool in routine ambulatory cancer care, and to evaluate its acceptability and perceived usefulness from the perspective of patients and clinicians. Eligible prostate cancer patients from four cancer centres were recruited (November 2014-June 2015) from radiation or surgical oncology clinics. A physician and/or health care professional reviewed the EPIC-CP results as part of the clinical encounter. Patient experience with the tool was evaluated using a nine-item Patient Exit Survey (PES). Clinician experience was evaluated through semi-structured qualitative interviews. Patient and clinician results were compared to identify common themes. A total of 333 patients were enrolled, of whom, 287 completed the PES. Most patients had one clinical encounter, although the number of EPIC-CP assessments ranged from 1 to 11 per patient, for a total of 937 EPIC-CP questionnaires completed. Item completion rates were high (91-100%), with items addressing sexual health among the lowest (91-92%). On the PES, most patients (70%) agreed with the item: "Completing this questionnaire helped me tell the clinicians about how I have been feeling". Thematic analysis from clinician interviews revealed that the EPIC-CP captures essential prostate-specific effects that facilitated person-centred communication and customization of interventions. Targeted clinical education and patient resources were seen as necessary for uptake. EPIC-CP was generally endorsed by clinicians and patients. The implementation of a disease-specific measure in place of a generic symptom screening tool has the potential to improve the quality of the clinical encounter and provide outcome measures for further health services research. Provincial implementation of this tool as a standard of care is recommended.

A Time-Friendly, Feasible Measure of Nutrition Knowledge in Type 1 Diabetes: The Electronic Nutrition and Carbohydrate Counting Quiz (eNCQ).

Greater knowledge about nutrition and carbohydrate counting are associated with improved glycemic control and quality of life in youth with type 1 diabetes (T1D). However, limited assessments of nutrition and carbohydrate knowledge have been developed, and existing measures can be time-consuming, overly broad, or not conducive to routine clinical use. To fill this gap, we developed and examined the feasibility of administering the electronic Nutrition and Carbohydrate Counting Quiz (eNCQ). Ninety-two caregivers and 70 youth with T1D (mean age 12.5 years; mean time since diagnosis 5 years; English speaking) completed the 19-item eNCQ via tablet during a routine clinical visit. Completion time and item completion rates were used to assess feasibility. Relationships between eNCQ scores and patient demographics, diabetes management, and health outcomes were examined. Participants took 10 minutes, on average, to complete the eNCQ. Total and Carbohydrate subscale scores (youth report) were negatively correlated with youth hemoglobin A1c (total r = -.38, carbohydrate r = -.38, Ps < .05), indicating that greater nutrition knowledge related to better glycemic control. Nutrition knowledge scores were generally high, but knowledge was negatively related to time since diabetes diagnosis ( r = -.276, P < .05). Findings support feasibility of the eNCQ to assess nutrition knowledge in routine clinical care. Following additional acceptability and validity testing, the eNCQ may identify families in need of further nutrition education. Nutrition assessment is particularly indicated for youth over one year since T1D diagnosis, as these families displayed lower nutrition knowledge and may need continuing education to maintain diabetes-specific nutrition knowledge over time.

Validation of the Spine Oncology Study Group—Outcomes Questionnaire to assess quality of life in patients with metastatic spine disease

Background ContextGeneral questionnaires are often used to assess quality of life in patients with spine metastases, although a disease-specific survey did not exist until recently. The Spine Oncology Study Group has developed an outcomes questionnaire (SOSG-OQ) to measure quality of life in these patients. However, a scoring system was not developed, and the questionnaire was not validated in a group of patients, nor was it compared with other general quality of life questionnaires such as the EuroQol 5 Dimensions (EQ-5D) questionnaire. PurposeOur primary null hypothesis is that there is no association between the SOSG-OQ and EQ-5D. Our secondary null hypothesis is that there is no difference in coverage and internal consistency between the SOSG-OQ and EQ-5D. We also assess coverage, consistency, and validity of the domains within the SOSG-OQ. Study Design/SettingA survey study from a tertiary care spine referral center was used for this study. Patient SampleThe patient sample consisted of 82 patients with spine metastases, myeloma, or lymphoma. Outcome MeasuresThe SOSG-OQ (27 questions, 6 domains) score ranges from 0 to 80, with a higher score indicating worse quality of life. The EQ-5D (5 questions, 5 domains) index score ranges from 0 to 1, with a higher score indicating better quality of life. MethodsThe association between the SOSG-OQ and EQ-5D index score was assessed using the Spearman rank correlation. Instrument coverage and precision were assessed by determining item completion rate, median score with range, and floor and ceiling effect. Internal consistency was assessed using Cronbach alpha. Multitrait analysis and exploratory factor analysis were used to analyze properties of the individual domains in the SOSG-OQ. ResultsThe Spearman rank correlation between the SOSG-OQ and EQ-5D questionnaire was high (r=−0.83, p<.001). Internal consistency of the SOSG-OQ (0.92, 95% CI: 0.89–0.94) was higher as compared to the internal consistency of the EQ-5D (0.73, 95% CI: 0.63–0.84; p<.001). The SOSG-OQ score had no floor or ceiling effect indicating good coverage (median 30, range 3–64), whereas the EQ-5D had a ceiling effect of 10% (median 0.71, range 0.05–1). ConclusionsIn conclusion, our study proposes a scoring methodology—after reversing four inversely scored items—for the SOSG-OQ and shows that the questionnaire is a valid tool for the assessment of quality of life in patients with metastatic spine disease. The SOSG-OQ is superior to the EQ-5D in terms of coverage and internal consistency but consists of more questions.

Obtaining Medical Records for Women With Intellectual Disabilities in a Community‐Based Health Promotion Intervention

AbstractThere is a critical need for objective data about receipt of preventive healthcare screenings that are not subject to self‐response bias. However, no available evidence indicates which methods are effective for obtaining retrospective medical record data for women with intellectual disabilities (ID) receiving care in the community. This article describes a procedure for obtaining retrospective medical record data for 199 women with ID who took part in a community‐based, multisite, randomized controlled trial of a health education intervention. Data were analyzed to determine rates of correct physician identification and physician response rates during the 2006–2009 study periods. To assess accuracy in identifying physicians and response rates over time, McNemar's test of paired proportions for dependent samples was used. Physician identification varied over time with correct identification being highest in more recent years. The majority of practices responded to our requests for medical record data; however, response rates and item completion rates were highest for the most recent data, with rates declining significantly for data from earlier years. Obtaining retrospective medical record data from community‐based medical practices is possible, but difficult. Therefore, researchers should budget resources to accommodate a lengthy process with extensive follow‐up. Researchers interested in older medical data face additional challenges in obtaining complete records.

The Effect of a Quality Improvement Intervention on Perceived Sleep Quality and Cognition in a Medical ICU*

To determine if a quality improvement intervention improves sleep and delirium/cognition. Observational, pre-post design. A tertiary academic hospital in the United States. 300 medical ICU patients. This medical ICU-wide project involved a "usual care" baseline stage, followed by a quality improvement stage incorporating multifaceted sleep-promoting interventions implemented with the aid of daily reminder checklists for ICU staff. Primary ICU outcomes were perceived sleep quality and noise ratings (measured on a 0-100 scale using the valid and reliable Richards-Campbell Sleep Questionnaire) and delirium/coma-free days. Secondary outcomes included ICU and hospital length of stay and mortality. Post-ICU measures of cognition and perceived sleep quality were evaluated in an ICU patient subset. During the baseline and sleep quality improvement stages, there were 122 and 178 patients, respectively, with more than one night in the ICU, accounting for 634 and 826 patient-days. Within the groups, 78 (63.9%) and 83 (46.6%) patients received mechanical ventilation. Over the 826 patient-day quality improvement period, checklist item completion rates ranged from 86% to 94%. In multivariable regression analysis of the quality improvement vs. baseline stages, improvements in overall Richards-Campbell Sleep Questionnaire sleep quality ratings did not reach statistical significance, but there were significant improvements in daily noise ratings (mean ± SD: 65.9±26.6 vs. 60.5±26.3, p = 0.001), incidence of delirium/coma (odds ratio: 0.46; 95% confidence interval, 0.23-0.89; p = 0.02), and daily delirium/coma-free status (odds ratio: 1.64; 95% confidence interval, 1.04-2.58; p = 0.03). Improvements in secondary ICU outcomes and post-ICU outcomes did not reach statistical significance. An ICU-wide quality improvement intervention to improve sleep and delirium is feasible and associated with significant improvements in perceived nighttime noise, incidence of delirium/coma, and daily delirium/coma-free status. Improvement in perceived sleep quality did not reach statistical significance.