Ian Porter

Framework and guidance for implementing patient-reported outcomes in clinical practice: evidence, challenges and opportunities.

Patient-reported outcomes (PROs) are reports of the status of a patients health condition that come directly from the patient. While PRO measures are a well-developed technology with robust standards in research, their use for informing healthcare decisions is still poorly understood. We review relevant examples of their application in the provision of healthcare and examine the challenges associated with implementing PROs in clinical settings. We evaluate evidence for their use and examine barriers to their uptake, and present an evidence-based framework for the successful implementation of PROs in clinical practice. We discuss current and future developments for the use of PROs in clinical practice, such as individualized measurement and computer-adaptive testing.

Routine provision of information on patient‐reported outcome measures to healthcare providers and patients in clinical practice

© 2015 The Cochrane Collaboration. This is the protocol for a review and there is no abstract. The objectives are as follows: To assess the impact of the routine use of patient-reported outcomes (PROs) in clinical practice on the process of care (including patient-physician communication, professionals awareness of patients quality of life, diagnosis and recognition rates, treatment rates, health services and resource use, as well as patient behaviour); patients and professionals experiences of care; and health outcomes (both generic and disease-specific, using both routinely-used clinical measures and PROs).

Clinical rating systems in elbow research—a systematic review exploring trends and distributions of use

BACKGROUNDnClinical rating systems are used as outcome measures in clinical trials and attempt to gauge the patients view of his or her own health. The choice of clinical rating system should be supported by its performance against established quality standards.nnnMETHODSnA search strategy was developed to identify all studies that reported the use of clinical rating systems in the elbow literature. The strategy was run from inception in Medline Embase and CINHAL. Data extraction identified the date of publication, country of data collection, pathology assessed, and the outcome measure used.nnnRESULTSnWe identified 980 studies that reported clinical rating system use. Seventy-two separate rating systems were identified. Forty-one percent of studies used ≥2 separate measures. Overall, 54% of studies used the Mayo Elbow Performance Score (MEPS). For arthroplasty, 82% used MEPS, 17% used Disabilities of Arm, Shoulder and Hand (DASH), and 7% used QuickDASH. For trauma, 66.7% used MEPS, 32% used DASH, and 23% used the Morrey Score. For tendinopathy, 31% used DASH, 23% used Patient-Rated Tennis Elbow Evaluation (PRTEE), and 13% used MEPS. Over time, there was an increased proportional use of the MEPS, DASH, QuickDASH, PRTEE, and the Oxford Elbow Score.nnnCONCLUSIONSnThis study identified a wide choice and usage of clinical rating systems in the elbow literature. Numerous studies reported measures without a history of either a specific pathology or cross-cultural validation. Interpretability and comparison of outcomes is dependent on the unification of outcome measure choice. This was not demonstrated currently.

Personal well-being networks, social capital and severe mental illness: exploratory study

BACKGROUNDnConnectedness is a central dimension of personal recovery from severe mental illness (SMI). Research reports that people with SMI have lower social capital and poorer-quality social networks compared to the general population.AimsTo identify personal well-being network (PWN) types and explore additional insights from mapping connections to places and activities alongside social ties.nnnMETHODnWe carried out 150 interviews with individuals with SMI and mapped social ties, places and activities and their impact on well-being. PWN types were developed using social network analysis and hierarchical k-means clustering of this data.nnnRESULTSnThree PWN types were identified: formal and sparse; family and stable; and diverse and active. Well-being and social capital varied within and among types. Place and activity data indicated important contextual differences within social connections that were not found by mapping social networks alone.nnnCONCLUSIONSnPlace locations and meaningful activities are important aspects of peoples social worlds. Mapped alongside social networks, PWNs have important implications for person-centred recovery approaches through providing a broader understanding of individuals lives and resources.Declaration of interestNone.

General practitioner contributions to achieving sustained healthcare for offenders: a qualitative study.

BackgroundOffenders frequently have substantial healthcare needs and, like many other socially marginalised groups, often receive healthcare in inverse proportion to their needs. Improved continuity of healthcare over time could contribute to addressing these needs. General Practitioners need to be able to support people with complex social and medical problems, even in systems that are not specifically designed to manage individuals with such degrees of complexity. We aimed to examine offenders’ perspectives on factors that contributed to, or worked against, creating and sustaining their access to healthcare.MethodsFrom a sample of 200 participants serving community or prison sentences in South West (SW) and South East (SE) England, who were interviewed about their health care experiences as part of the Care for Offenders: Continuity of Access (COCOA) study, we purposively sampled 22 participants for this sub-study, based on service use. These interviews were transcribed verbatim. A thematic analytic approach initially applied 5 a priori codes based on access and different components of continuity. Data were then examined for factors that contributed to achieving and disrupting access and continuity.ResultsParticipants described how their own life situations and behaviours contributed to their problems in accessing healthcare and also identified barriers created by existing access arrangements. They also highlighted how some General Practitioners used their initiative and skills to ‘workaround’ the system, and build positive relationships with them; feeling listened to and building trust were particularly valued, as was clear communication. Limitations faced by General Practitioners included a lack of appropriate services to refer people to, where the offender patients would meet the access criteria, and disagreements regarding medication prescriptions.ConclusionsGeneral Practitioners can make a positive contribution to supporting access to healthcare for an under-served population by facilitating more flexible and less formal access arrangements, by using their relationship skills, and by problem-solving. General Practitioners should recognise their potential to transform people’s experience of healthcare whilst working in imperfect systems, particularly with vulnerable and marginalised groups who have complex medical and social needs.

Predicting Incident Multimorbidity

PURPOSE Multimorbidity is associated with adverse outcomes, yet research on the determinants of its incidence is lacking. We investigated which sociodemographic, health, and individual lifestyle (eg, physical activity, smoking behavior, body mass index) characteristics predict new cases of multimorbidity. METHODS We used data from 4,564 participants aged 50 years and older in the English Longitudinal Study of Aging that included a 10-year follow-up period. Discrete time-to-event (complementary log-log) models were constructed for exploring the associations of baseline characteristics with outcomes between 2002-2003 and 2012-2013 separately for participants with no initial conditions (n = 1,377) developing multimorbidity, any increase in conditions within 10 years regardless of initial conditions, and the impact of individual conditions on incident multimorbidity. RESULTS The risks of developing multimorbidity were positively associated with age, and they were greater for the least wealthy, for participants who were obese, and for those who reported the lowest levels of physical activity or an external locus of control (believing that life events are outside of one’s control) for all groups regardless of baseline conditions (all linear trends <.05). No significant associations were observed for sex, educational attainment, or social detachment. For participants with any increase in conditions (n = 4,564), a history of smoking was the only additional predictor. For participants with a single baseline condition (n = 1,534), chronic obstructive pulmonary disease (COPD), asthma, and arrhythmia showed the strongest associations with subsequent multimorbidity. CONCLUSIONS Our findings support the development and implementation of a strategy targeting the prevention of multimorbidity for susceptible groups. This approach should incorporate behavior change addressing lifestyle factors and target health-related locus of control.

Perspectives of patients and professionals on the use of patient reported outcome measures in primary care: a systematic review of qualitative studies

s for plenary sessions P1 Using Patient Reported Outcome Measures (PROMs) in cancer care Galina Velikova Leeds Institute of Cancer & Pathology, University of Leeds and Leeds Teaching Hospitals, Leeds, UK Health and Quality of Life Outcomes 2017, 15(Suppl 1):P1 Monitoring of patients’ physical and psychological problems during and after cancer treatment is essential in modern oncology practice. Traditional clinical methods can be supplemented by PatientReported Outcomes Measures (PROMs) measures. The potential role of PROMs is recognised and endorsed by national and international practice guidelines. The introduction of formal measurement of PROMs in clinical practice is a complex health care innovation requiring careful planning, design and successful implementation of a number of essential components, such as choosing the patient questionnaire(s), a convenient affordable electronic method for reporting and display in hospital records and engaging clinicians to use and act on the reports. There is mounting research evidence that using PROMs in individual patient care in oncology is beneficial to patients, but this approach has not found a place in routine clinical practice. A brief overview of this evidence will be provided. Following this, the presentation will focus on examples of incorporating PROMs and eHealth interventions into routine patient care during and after cancer treatment, drawing on 20 years’ experience in Leeds of using electronic systems for capturing patient reported data in oncology settings. Examples will be given of: 1) Monitoring toxicity during systemic cancer treatment using online PROMs integrated with Electronic Patient Records (randomized trial part of NIHR eRAPID programme); 2) Service development project Remote follow-up of testicular cancer patients using online PROMs plus community-based investigations. Examples of other online PROMs systems will be presented. The values and challenges of PROMs integration in routine oncology practice will be discussed. P2 The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS): a view from the UK Jose M Valderas Health Services & Policy Research Group, University of Exeter Medical School, Exeter UK; Exeter Collaboration for Academic Primary Care (APEx), Exeter, UK Health and Quality of Life Outcomes 2017, 15(Suppl 1):P2 The Patient-Reported Outcomes Measurement Information System (PROMIS) is a system for the measurement of patient reported outcomes whose development was funded by the US National Institute for Health. Its methodological rigor, scope, ambition and flexibility (including both standardized short forms and computerized adaptive administration) has turned it into one of the standards of PROMs measurement, although its use is still very limited outside the US. The presentation will provide an overview of the rationale for the development of the system, the methods employed in its development and the resulting scales and short forms and key characteristics, including Assessment Centre, the online platform supporting the use of PROMIs scales. Current applications and use of PROMIS in the UK will be reviewed and the potential for its application to support the management of patients in the NHS will be considered. Abstracts for oral paperss for oral papers Session 1a. Development and validation of

Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research

Table of contentsS1 Using computerized adaptive testingTim CroudaceS2 Well-being: what is it, how does it compare to health and what are the implications of using it to inform health policyJohn BrazierO1 “Am I going to get better?”—Using PROMs to inform patients about the likely benefit of surgeryNils Gutacker, Andrew StreetO2 Identifying Patient Reported Outcome Measures for an electronic Personal Health RecordDan Robotham, Samantha Waterman, Diana Rose, Safarina Satkunanathan, Til WykesO3 Examining the change process over time qualitatively: transformative learning and response shiftNasrin Nasr, Pamela EnderbyO4 Developing a PROM to evaluate self-management in diabetes (HASMID): giving patients a voiceJill Carlton, Donna Rowen, Jackie Elliott, John Brazier, Katherine Stevens, Hasan Basarir, Alex LabeitO5 Development of the Primary Care Outcomes Questionnaire (PCOQ)Mairead Murphy, Sandra Hollinghurst, Chris SalisburyO6 Developing the PKEX score- a multimodal assessment tool for patients with shoulder problemsDominic Marley, James Wilson, Amy Barrat, Bibhas RoyO7 Applying multiple imputation to multi-item patient reported outcome measures: advantages and disadvantages of imputing at the item, sub-scale or score levelInes Rombach, Órlaith Burke, Crispin Jenkinson, Alastair Gray, Oliver Rivero-AriasO8 Integrating Patient Reported Outcome Measures (PROMs) into routine primary care for patients with multimorbidity: a feasibility studyIan Porter, Jaheeda Gangannagaripalli, Charlotte Bramwell, Jose M. ValderasO9 eRAPID: electronic self-report and management of adverse-events for pelvic radiotherapy (RT) patientsPatricia Holch, Susan Davidson, Jacki Routledge, Ann Henry, Kevin Franks, Alex Gilbert, Kate Absolom & Galina VelikovaO10 Patient reported outcomes (PROMs) based recommendation in clinical guidance for the management of chronic conditions in the United KingdomIan Porter, Jose M.ValderasO11 Cross-sectional and longitudinal parameter shifts in epidemiological data: measurement invariance and response shifts in cohort and survey data describing the UK’s Quality of LifeJan R. BoehnkeO12 Patient-reported outcomes within health technology decision making: current status and implications for future policyAndrew Trigg, Ruth HowellsO13 Can social care needs and well-being be explained by the EQ-5D? Analysis of Health Survey for England datasetJeshika Singh, Subhash Pokhrel, Louise LongworthO14 Where patients and policy meet: exploring individual-level use of the Long-Term Conditions Questionnaire (LTCQ)Caroline Potter, Cheryl Hunter, Laura Kelly, Elizabeth Gibbons, Julian Forder, Angela Coulter, Ray Fitzpatrick, Michele Peters