Levels Of Patient Engagement Research Articles

PHP154 - Patient-Reported Outcome Measures in the FDA Pilot Compendium: Meeting Today’s Standards for Patient Engagement in Development?

In 2016, the Food and Drug Administration (FDA) released its Pilot Clinical Outcome Assessment (COA) Compendium, to foster patient-focused drug development (PFDD) by summarizing in a single resource COA information for various diseases and conditions to: (1) facilitate communication; (2) provide clarity and transparency; and (3) serve as a starting point for early drug development. For included patient-reported outcome (PRO) measures, it is unclear if patient perspectives were solicited during development or validation, a recognized step in FDA’s Roadmap to Patient-Focused Outcome Measurement in Clinical Trials. This review sought to identify level of patient engagement in development of included PRO measures. PROs included in Compendium Chapters 1 or 2 were extracted. Three reviewers independently searched PubMed and Google to identify information on measure pedigree (development, validation, reliability, etc.). Data on method and stage of measure development where patient engagement took place were abstracted. Among 26 evaluated PRO measures, no information on development or validation was found for nearly half the sample (n=12). Among remaining measures (n=14), five had no evidence of patient engagement; two noted engagement during concept elicitation; one noted engagement during psychometric validation; and six noted engagement during both concept elicitation and cognitive interviewing. Measures either previously qualified or submitted for qualification were more likely to have documented patient engagement. For the FDA Pilot COA Compendium to fulfill its purpose of fostering PFDD, it needs to reflect today’s standards by improving transparency and facilitating clear identification of included measures so level of patient engagement, among other factors, can be properly assessed. Suggested improvements include: more clearly identifying specific measure by name or with citations; identifying clinical trials corresponding to COA use in trials; and including only measures already qualified or undergoing qualification.

Patient and therapist experiences of using affordable feedback-based technology in rehabilitation: a qualitative study nested in a randomized controlled trial

Objective: To explore how technologies are used and experienced in rehabilitation. Design: A qualitative study using a grounded theory approach within a randomized controlled trial investigating the effectiveness of tailored, affordable technologies to improve mobility and physical activity. Settings: Aged care and neurological rehabilitation wards with community follow-up. Participants: Twenty patients undergoing rehabilitation and randomized to the experimental arm of a trial (mean age 64 years (SD 23)) were recruited for interviews, plus 11 physiotherapists involved in technology prescription as part of the trial. Method: Two interviews per patient (one in hospital, one post-discharge) and four focus groups with physiotherapists were conducted. Transcribed data were coded and synthesized. Memo-writing and constant comparison methods guided data analysis. Results: A process of patient engagement with technology involving two stages: (1) initial patient engagement and (2) maintaining patient engagement was identified. Therapists used a series of steps and strategies to gain and maintain patient engagement. A positive first experience and continued input into patient programmes was needed. The level of patient engagement was not consistent across the duration of the trial, increasing or decreasing due to changes in the technologies prescribed or setting of use. Two conditions were key to optimizing patient engagement: sufficient support and perceived benefit from using technology. Conclusions: Patients can engage with technology during rehabilitation when prescription is tailored by a therapist. Perceiving benefit from using technology, in addition to receiving the right support to enable use appears to influence the level of patient engagement.

Patient-Reported Outcome Measures in the Food and Drug Administration Pilot Compendium: Meeting Today’s Standards for Patient Engagement in Development?

BackgroundIn 2016, the Food and Drug Administration (FDA) released a Pilot Clinical Outcome Assessment Compendium (COA Compendium) intended to foster patient-focused drug development (PFDD). However, it is unclear whether patient perspectives were solicited during development or validation of the included patient-reported outcome (PRO) measures. ObjectiveTo examine the pedigree of a sample of measures included in the COA Compendium. MethodsPROs included in chapters 1 or 2 of the COA Compendium were extracted and three reviewers independently searched PubMed and Google to identify information on measure pedigree. Data on method and stage of measure development where patient engagement took place were documented. ResultsAmong the 26 evaluated PRO measures, we were unable to identify information on development or validation on nearly half the sample (n = 12). Among the remaining 14 measures, 5 did not include any evidence of patient engagement; 2 engaged patients during concept elicitation only; 1 engaged patients during psychometric validation only; and 6 engaged patients during both concept elicitation and cognitive interviewing. Measures either previously qualified or submitted for qualification were more likely to include patient engagement. ConclusionsFor the FDA Pilot COA Compendium to fulfill its purpose of fostering PFDD, it needs fine-tuning to reflect today’s standards, improving transparency and facilitating clear identification of included measures so that the level of patient engagement, among other factors, can be properly assessed. Suggested improvements include identifying clinical trials that correspond to the COA Compendium’s use in drug development; more clearly identifying which measure is referred to; and including only those measures that already qualified or undergoing qualification.

Effective behavioral intervention strategies using mobile health applications for chronic disease management: a systematic review

BackgroundMobile health (mHealth) has continuously been used as a method in behavioral research to improve self-management in patients with chronic diseases. However, the evidence of its effectiveness in chronic disease management in the adult population is still lacking. We conducted a systematic review to examine the effectiveness of mHealth interventions on process measures as well as health outcomes in randomized controlled trials (RCTs) to improve chronic disease management.MethodsRelevant randomized controlled studies that were published between January 2005 and March 2016 were searched in six databases: PubMed, CINAHL, EMBASE, the Cochrane Library, PsycINFO, and Web of Science. The inclusion criteria were RCTs that conducted an intervention using mobile devices such as smartphones or tablets for adult patients with chronic diseases to examine disease management or health promotion.ResultsOf the 12 RCTs reviewed, 10 of the mHealth interventions demonstrated statistically significant improvement in some health outcomes. The most common features of mHealth systems used in the reviewed RCTs were real-time or regular basis symptom assessments, pre-programed reminders, or feedbacks tailored specifically to the data provided by participants via mHealth devices. Most studies developed their own mHealth systems including mobile apps. Training of mHealth systems was provided to participants in person or through paper-based instructions. None of the studies reported the relationship between health outcomes and patient engagement levels on the mHealth system.ConclusionsFindings from mHealth intervention studies for chronic disease management have shown promising aspects, particularly in improving self-management and some health outcomes.

Process and Pitfalls of Sperm Cryopreservation.

Sperm cryopreservation has been utilized routinely for over 40 years to preserve fertility in men undergoing cancer therapy and allow conception for infertile couples. This article provides a concise and up-to-date review of the literature and covers the latest advances in sperm cryopreservation and its array of clinical indications. Over recent years, the scope of clinical indications used for sperm cryopreservation has expanded widely. Consequently, more patient groups are eligible for sperm freezing, requiring specialist resources and higher running costs. Although sperm cryopreservation prior to cancer therapy is readily available in many countries, referral rates by oncology specialists and levels of patient engagement with cryopreservation services are both reported as low. Furthermore, sperm banking continues to raise ethical issues such whether sperm donation should be anonymous and whether sperm can be utilized posthumously by the surviving partner without consent from the patient. This review focuses on the technological advances and ethical controversies in sperm cryopreservation, and how better understanding of these issues could lead to improved access to fertility preserving treatment for patients.

Evaluation of Patient and Family Engagement Strategies to Improve Medication Safety.

Patient and family engagement (PFE) is critical for patient safety. We systematically reviewed types of PFE strategies implemented and their impact on medication safety. We searched MEDLINE, EMBASE, reference lists and websites to August 2016. Two investigators independently reviewed all abstracts and articles, and articles were additionally reviewed by two senior investigators for selection. One investigator abstracted data and two investigators reviewed the data for accuracy. Study quality was determined by consensus. Investigators developed a framework for defining the level of patient engagement: informing patients about medications (Level 1), informing about engagement with health care providers (Level 2), empowering patients with communication tools and skills (Level 3), partnering with patients in their care (Level 4), and integrating patients as full care team members (Level 5). We included 19studies that mostly targeted older adults taking multiple medications. The median level of engagement was 2, ranging from 2-4. We identified no level 5 studies. Key themes for patient engagement strategies impacting medication safety were patient education and medication reconciliation, with a subtheme of patient portals. Most studies (84%) reported implementation outcomes. The most commonly reported medication safety outcomes were medication errors, including near misses and discrepancies (47%), and medication safety knowledge (37%). Most studies (63%) were of medium to low quality, and risk of bias was generally moderate. Among the 11 studies with control groups, 55% (n=6) reported statistically significant improvement on at least one medication safety outcome. Further synthesis of medication safety measures was limited due to intervention and outcome heterogeneity. Key strategies for engaging patients in medication safety are education and medication reconciliation. Patient engagement levels were generally low, as defined by anovel framework for determining levels of patient engagement. As more patient engagement studies are conducted, this framework should be evaluated for associations with patient outcomes.

Sharing Annotated Audio Recordings of Clinic Visits With Patients-Development of the Open Recording Automated Logging System (ORALS): Study Protocol.

BackgroundProviding patients with recordings of their clinic visits enhances patient and family engagement, yet few organizations routinely offer recordings. Challenges exist for organizations and patients, including data safety and navigating lengthy recordings. A secure system that allows patients to easily navigate recordings may be a solution.ObjectiveThe aim of this project is to develop and test an interoperable system to facilitate routine recording, the Open Recording Automated Logging System (ORALS), with the aim of increasing patient and family engagement. ORALS will consist of (1) technically proficient software using automated machine learning technology to enable accurate and automatic tagging of in-clinic audio recordings (tagging involves identifying elements of the clinic visit most important to patients [eg, treatment plan] on the recording) and (2) a secure, easy-to-use Web interface enabling the upload and accurate linkage of recordings to patients, which can be accessed at home.MethodsWe will use a mixed methods approach to develop and formatively test ORALS in 4 iterative stages: case study of pioneer clinics where recordings are currently offered to patients, ORALS design and user experience testing, ORALS software and user interface development, and rapid cycle testing of ORALS in a primary care clinic, assessing impact on patient and family engagement. Dartmouth’s Informatics Collaboratory for Design, Development and Dissemination team, patients, patient partners, caregivers, and clinicians will assist in developing ORALS.ResultsWe will implement a publication plan that includes a final project report and articles for peer-reviewed journals. In addition to this work, we will regularly report on our progress using popular relevant Tweet chats and online using our website, www.openrecordings.org. We will disseminate our work at relevant conferences (eg, Academy Health, Health Datapalooza, and the Institute for Healthcare Improvement Quality Forums). Finally, Iora Health, a US-wide network of primary care practices (www.iorahealth.com), has indicated a willingness to implement ORALS on a larger scale upon completion of this development project.ConclusionsUpon the completion of this project we will have developed a novel recording system that will be ready for large-scale testing. Our long-term goal is for ORALS to seamlessly fit into a clinic’s and patient’s daily routine, increasing levels of patient engagement and transparency of care.

Challenges of Realising Patient-Centred Outcomes for Deaf Patients.

In general populations, it has been recognised that patients play a key role in the quality of their own healthcare. However, the idea of realising patient-centred outcomes for the signing Deaf community, who experience the world in a visual way, raises some challenging issues that are rarely acknowledged. Using published research and translational health projects involving Deaf people both in the UK and internationally, this article discusses the challenges of realising patient-centred outcomes for Deaf people who are sign language users. The discussion includes an examination of: barriers to accessing healthcare for Deaf people; the impact of an insufficient acquisition of knowledge about health-related issues; Deaf people's limited fund of information; not recognising Deaf people's values and citizenship rights; and challenges in gathering Deaf people's reported outcomes. We contend that without including Deaf people in shaping the healthcare experience for them, whether at an interpersonal level of patient engagement or at a structural level, the concept of fulfilling patient-centred outcomes for Deaf people is not achievable.

Effect of an Advanced Pharmacy Practice Experience on Medication Therapy Management Services in a Centralized Retail Pharmacy Program.

Medication therapy management (MTM) delivery is increasingly important in managed care. Successful delivery positively affects patient health and improves Centers for Medicare & Medicaid Services star ratings, a measure of health plan quality. As MTM services continue to grow, there is an increased need for efficient and effective care models. The primary objectives of this project were to describe the delivery of MTM services by fourth-year Advanced Pharmacy Practice Experience (APPE) students in a centralized retail pharmacy system and to evaluate and quantify the clinical and financial contributions of the students. The secondary objective was to describe the engagement needed to complete comprehensive medication reviews (CMRs) and targeted interventions. From May 2015 to December 2015, thirty-five APPE students from the University of Colorado Skaggs School of Pharmacy provided MTM services at Albertsons Companies using the OutcomesMTM and Mirixa platforms. Students delivered patient care services by phone at the central office and provided face-to-face visits at pharmacies in the region. With implementation of the MTM APPE in 2015, the team consisted of 2 MTM pharmacists and pharmacy students, as compared with 1 MTM pharmacist in 2014. The number of CMRs and targeted interventions completed and the estimated additional revenue generated during the 2015 time period were compared with those completed from May through December 2014. The patient and provider engagement needed to complete the CMRs and targeted interventions was summarized. 125 CMRs and 1,918 targeted interventions were billed in 2015, compared with 13 CMRs and 767 targeted interventions in 2014. An estimated $16,575-$49,272 of additional revenue was generated in 2015. To complete the interventions in 2015, the team engaged in 1,714 CMR opportunities and 4,686 targeted intervention opportunities. In this MTM rotation, students provided real-life care to patients, resulting in financial and clinical contributions. This model of education and care delivery can be replicated in the community pharmacy or managed care setting. APPE students are an important component of this model of care delivery, particularly when considering the level of patient engagement needed to complete MTM interventions. No outside funding supported this research. The authors have no conflicts of interest to disclose related to this work. All authors contributed to study concept and design. Rodgers collected the data, and data interpretation was performed by Vande Griend, along with Rodgers and Nuffer. The manuscript was written and revised primarily by Vande Griend, along with Nuffer and Rodgers. This project was presented at the Pharmacy Quality Alliance Annual Meeting in Arlington, Virginia, in May 2016.

Adaptation and Validation of a Chinese Version of Patient Health Engagement Scale for Patients with Chronic Disease.

The Patient Health Engagement Scale (PHE-s) was designed to assess the emotional and psychological attitudes of patients' engagement along their healthcare management journey. The aim of this study was to validate a culturally adapted Chinese version of the PHE-s (CPHE-s). Three hundred and seventy-seven participants were recruited from eight community health centers in a sample of patients with chronic disease in Hunan Province, China. The original Italian PHE-s was translated into Mandarin Chinese using a standardized forward–backward translation. The Rasch model was utilized and presented uni-dimensionality and good items fitness of the PHE-s. The internal consistency was 0.89 and the weighted Kappa coefficients of the items (test–retest reliability) ranged from 0.52 to 0.79. Both principal component analysis and confirmatory factor analysis supported a single-factor structure of the PHE-s. In testing the external validity, the PHE-s showed a significant moderate correlation with patient activation but not with medicine adherence behavior, which requires further exploration. The result suggested that the PHE-s is a reliable and valid instrument to assess the level of patient engagement in his or her own health management among chronic patients in China. Further analysis of reliability and validity should be assessed among other patient cohorts in China, and future directions for testing changes after patient engagement interventions should be developed by exploring some clinical relevance.

Impact of patient-centered discharge tools: A systematic review.

Patient-centered discharge tools provide an opportunity to engage patients, enhance patient understanding, and improve capacity for self-care and postdischarge outcomes. To review studies that engaged patients in the design or delivery of discharge instruction tools and that tested their effect among hospitalized patients. We conducted a search of 12 databases and journals from January 1994 through May 2014, and references of retrieved studies. English-language studies that tested discharge tools meant to engage patients were selected. Studies that measured outcomes after 3 months or without a control group or period were excluded. Two independent reviewers assessed the full-text papers and extracted data on features of patient engagement. Thirty articles met inclusion criteria, 28 of which examined educational tools. Of these, 13 articles involved patients in content creation or tool delivery, with only 6 studies involving patients in both. While many of these studies (10 studies) demonstrated an improvement in patient comprehension, few studies found improvement in patient adherence despite their engagement. A few studies demonstrated an improvement in self-efficacy (2 studies) and a reduction in unplanned visits (3 studies). Improving patient engagement through the use of media, visual aids, or by involving patients when creating or delivering a discharge tool improves comprehension. However, further studies are needed to clarify the effect on patient experience, adherence, and healthcare utilization postdischarge. Better characterization of the level of patient engagement when designing discharge tools is needed given the heterogeneity found in current studies. Journal of Hospital Medicine 2017;12:110-117.

Patient Engagement in Randomized Controlled Tai Chi Clinical Trials among the Chronically Ill.

Physicians encounter various symptom-based complaints each day. While physicians strive to support patients with chronic illnesses, evidence indicates that patients who are actively involved in their health care have better health outcomes and sometimes lowers costs. This article is to analyze how patient engagement is described when complex interventions such as Tai Chi were delivered in Randomized Controlled clinical Trials (RCTs). It reviews the dynamic patient- physician relationship in chronic illness management and to illustrate the patient engagement process, using Tai Chi as an example intervention. RCTs are considered the gold standard in clinical research. This study is a qualitative analysis of RCTs using Tai Chi as an intervention. A systematic literature search was performed to identify quality randomized controlled clinical trials that investigated the effects of Tai Chi. Selected clinical trials were classified according to research design, intervention style, patient engagement, and outcomes. Patient engagement was classified based on levels of patient participation, compliance, and selfmanagement. The chronic health conditions included in this paper are Parkinson's disease, polyneuropathy, hypertension, stroke, chronic insomnia, chronic heart failure, fibromyalgia, osteoarthritis, central obesity, depression, deconditioning in the elderly, or being pre-clinically disabled. We found that patient engagement, as a concept, was not well defined in literature. It covers a wide range of related terms, such as patient involvement, participation, shared decision- making, patient activation, adherence, compliance, and self-management. Tai Chi, as a very complex practice system, is to balance all aspects of a patient's life; however, the level of patient engagement is difficult to describe using conventional clinical trial design. To accurately illustrate the effect of a complex intervention, novel research design must explore ways to measure patient engagement in the intervention in order to clarify its specific role on health.

P2.05-049 Radical Treated NSCLC Radiotherapy Patients: A Prospective Study of Toxicities and Outcomes: Topic: Toxicities

Radical radiotherapy is widely used in the treatment of non-small cell lung cancer (NSCLC) among patients ineligible for surgery. Although side effects of radical radiotherapy have been well documented in clinical studies there is little real world prospective data describing their course, severity and effect on patient experience following treatment. NSCLC patients from the Beatson West of Scotland Cancer Centre (a specialized cancer care center serving a population of 2.4m), treated with radical radiotherapy between September 2014 to December 2015, were offered followed up by a specialist nurse led clinic. This consisted of a telephone consultation at 2 weeks and clinic attendance at 2 and 6 months. Patient and tumor demographics were collected. Side effects were recorded at each visit and graded using the Common Terminology Criteria for Adverse Events (CTCAE). Descriptive statistical analysis was performed using Stata 14.0. 92 consecutive patients attended the clinic, 50% were male and the median age was 70 (IQR 63.5-78) years. 48 patients had squamous carcinoma and all were performance status 0 – 2. The breakdown was 16% 23% and 56% for stage I, II and III respectively. A total of 62 (67%) of patients received 55Gy in 20 fractions. Overall one-year survival was 59.7% (95%CI 47.0-70.3%). Information from 75% was obtained by telephone at 2 weeks and in clinic at 8 weeks post treatment. At 6 months 54% attended for assessment. The most commonly reported side effects at week 2 were fatigue (90%), dyspnoea (70%), oesophagitis (70%), anorexia (26%) and cough (21%). At week 8 side effects were similar except that oesophagitis had decreased to 23% (p<0.001), and cough increased to 30% (p=0.07). All side-effects were graded 2 or less with the exception of one patient with grade 3 oesophagitis at week 8. This study confirmed a high level of patient engagement with a nurse led follow up protocol which was able to capture detailed information about frequency and severity of side effects following radical thoracic radiotherapy. This confirmed that the side effects patients experience were temporary and manageable.

Dissemination and Implementation of Shared Decision Making Into Clinical Practice: A Research Agenda.

Shared decision making (SDM) is essential to advancing patient-centered care in emergency medicine. Despite many documented benefits of SDM, prior research has demonstrated persistently low levels of patient engagement by clinicians across many disciplines, including emergency medicine. An effective dissemination and implementation (D&I) framework could be used to alter the process of delivering care and to facilitate SDM in routine clinical emergency medicine practice. Here we outline a research and policy agenda to support the D&I strategy needed to integrate SDM into emergency care.

Improving Hypertension Control and Patient Engagement Using Digital Tools

Hypertension is present in 30% of the adult US population and is a major contributor to cardiovascular disease. The established office-based approach yields only 50% blood pressure control rates and low levels of patient engagement. Available home technology now provides accurate, reliable data that can be transmitted directly to the electronic medical record. We evaluated blood pressure control in 156 patients with uncontrolled hypertension enrolled into a home-based digital-medicine blood pressure program and compared them with 400 patients (matched to age, sex, body mass index, and blood pressure) in a usual-care group after 90 days. Digital-medicine patients completed questionnaires online, were asked to submit at least one blood pressure reading/week, and received medication management and lifestyle recommendations via a clinical pharmacist and a health coach. Blood pressure units were commercially available that transmitted data directly to the electronic medical record. Digital-medicine patients averaged 4.2 blood pressure readings per week. At 90 days, 71% of digital-medicine vs 31% of usual-care patients had achieved target blood pressure control. Mean decrease in systolic/diastolic blood pressure was 14/5 mm Hg in digital medicine, vs 4/2 mm Hg in usual care (P < .001). Excess sodium consumption decreased from 32% to 8% in the digital-medicine group (P = .004). Mean patient activation increased from 41.9 to 44.1 (P = .008), and the percentage of patients with low patient activation decreased from 15% to 6% (P = .03) in the digital-medicine group. A digital hypertension program is feasible and associated with significant improvement in blood pressure control rates and lifestyle change. Utilization of a virtual health intervention using connected devices improves patient activation and is well accepted by patients.

Technology-assisted self-testing and management of oral anticoagulation therapy: a qualitative patient-focused study.

Oral anticoagulation therapy requires regular blood testing to ensure therapeutic levels are maintained and excessive bleeding/clotting is avoided. Technology-assisted self-testing and management is seen as one of the key areas in which quality of care can be improved whilst reducing costs. Nevertheless, levels of patient engagement in self-testing and management remain low. To date, little research emphasis has been placed on understanding the patients' perspectives for low engagement. The typical approach adopted by healthcare providers is to provide patient education programmes, with the expectation that individual patients will change their behaviour and adopt new self-care strategies. However, if levels of patient engagement are to be increased, healthcare providers must also develop a better understanding of how their clinical service provision is perceived by patients and make adaptations. To explore patient views, needs and expectations of an anticoagulation service and the self-testing and management services provided. Interviews were conducted with 17 patients who currently engage in international normalised ratio (INR) self-testing and management. Thematic coding and analysis were carried out on the interview transcripts. Four high-level themes emerged from interviews: (i) role of clinic, (ii) motivations for self-testing, (iii) managing INR and (iv) trust. The clinic was seen as adding value in terms of specifying testing frequency, dosage profiles and calibrating equipment. Prompt communication from clinic to patient was also valued, although more personalised/real-time communication would help avoid feelings of isolation. Patients felt more in control as self-tester/managers and often took decisions about treatment adjustments themselves. However, some also manipulated their own test results to avoid 'unnecessary' interventions. More personalised/real-time communication, pragmatic and collaborative patient-clinician partnerships and recognition of expert patient knowledge and expertise are needed if increased levels of engagement with self-testing and management service provision is to be realised.

Effectiveness of technology use for engaging community dwelling adults with chronic disease in self-care behavior management in health care: a systematic review protocol.

The quantitative objective is to identify the effectiveness of technology use for self-care behavior management and the patient engagement levels in health care.More specifically, the objectives are to identify: 1) the effectiveness of technology use (includes mobile health applications, text messages, telemedicine/video conferences between providers and people with chronic disease, remote monitoring and websites) in health care for engaging community-dwelling adults with chronic disease in self-care management, and 2) the patient engagement levels in health care.

Lung cancer screening: what do long-term smokers know and believe?

ObjectiveTo explore knowledge and beliefs of long‐term smokers about lung cancer, associated risk factors and lung cancer screening.DesignQualitative study theoretically framed by the expanded Health Belief Model based on four focus group discussions. Content analysis was performed to identify themes of knowledge and beliefs about lung cancer, associated risk factors and lung cancer screening among long‐term smokers' who had and had not been screened for lung cancer.MethodsTwenty‐six long‐term smokers were recruited; two groups (n = 9; n = 3) had recently been screened and two groups (n = 7; n = 7) had never been screened.ResultsWhile most agreed lung cancer is deadly, confusion or inaccurate information exists regarding the causes and associated risk factors. Knowledge related to lung cancer screening and how it is performed was low; awareness of long‐term smoking's association with lung cancer risk remains suboptimal. Perceived benefits of screening identified include: (i) finding lung cancer early; (ii) giving peace of mind; and (iii) motivation to quit smoking. Perceived barriers to screening identified include: (i) inconvenience; (ii) distrust; and (iii) stigma.ConclusionsPerceived barriers to lung cancer screening, such as distrust and stigma, must be addressed as lung cancer screening becomes more widely implemented. Heightened levels of health‐care system distrust may impact successful implementation of screening programmes. Perceived smoking‐related stigma may lead to low levels of patient engagement with medical care and decreased cancer screening participation. It is also important to determine modifiable targets for intervention to enhance the shared decision‐making process between health‐care providers and their high‐risk patients.

Goal setting and strategies to enhance goal pursuit for adults with acquired disability participating in rehabilitation.

Goal setting is considered a key component of rehabilitation for adults with acquired disability, yet there is little consensus regarding the best strategies for undertaking goal setting and in which clinical contexts. It has also been unclear what effect, if any, goal setting has on health outcomes after rehabilitation. To assess the effects of goal setting and strategies to enhance the pursuit of goals (i.e. how goals and progress towards goals are communicated, used, or shared) on improving health outcomes in adults with acquired disability participating in rehabilitation. We searched CENTRAL, MEDLINE, EMBASE, four other databases and three trials registers to December 2013, together with reference checking, citation searching and contact with study authors to identify additional studies. We did not impose any language or date restrictions. Randomised controlled trials (RCTs), cluster-RCTs and quasi-RCTs evaluating the effects of goal setting or strategies to enhance goal pursuit in the context of adult rehabilitation for acquired disability. Two authors independently reviewed search results for inclusion. Grey literature searches were conducted and reviewed by a single author. Two authors independently extracted data and assessed risk of bias for included studies. We contacted study authors for additional information. We included 39 studies (27 RCTs, 6 cluster-RCTs, and 6 quasi-RCTs) involving 2846 participants in total. Studies ranged widely regarding clinical context and participants' primary health conditions. The most common health conditions included musculoskeletal disorders, brain injury, chronic pain, mental health conditions, and cardiovascular disease.Eighteen studies compared goal setting, with or without strategies to enhance goal pursuit, to no goal setting. These studies provide very low quality evidence that including any type of goal setting in the practice of adult rehabilitation is better than no goal setting for health-related quality of life or self-reported emotional status (8 studies; 446 participants; standardised mean difference (SMD) 0.53, 95% confidence interval (CI) 0.17 to 0.88, indicative of a moderate effect size) and self-efficacy (3 studies; 108 participants; SMD 1.07, 95% CI 0.64 to 1.49, indicative of a moderate to large effect size). The evidence is inconclusive regarding whether goal setting results in improvements in social participation or activity levels, body structure or function, or levels of patient engagement in the rehabilitation process. Insufficient data are available to determine whether or not goal setting is associated with more or fewer adverse events compared to no goal setting.Fourteen studies compared structured goal setting approaches, with or without strategies to enhance goal pursuit, to 'usual care' that may have involved some goal setting but where no structured approach was followed. These studies provide very low quality evidence that more structured goal setting results in higher patient self-efficacy (2 studies; 134 participants; SMD 0.37, 95% CI 0.02 to 0.71, indicative of a small effect size) and low quality evidence for greater satisfaction with service delivery (5 studies; 309 participants; SMD 0.33, 95% CI 0.10 to 0.56, indicative of a small effect size). The evidence was inconclusive regarding whether more structured goal setting approaches result in higher health-related quality of life or self-reported emotional status, social participation, activity levels, or improvements in body structure or function. Three studies in this group reported on adverse events (death, re-hospitalisation, or worsening symptoms), but insufficient data are available to determine whether structured goal setting is associated with more or fewer adverse events than usual care.A moderate degree of heterogeneity was observed in outcomes across all studies, but an insufficient number of studies was available to permit subgroup analysis to explore the reasons for this heterogeneity. The review also considers studies which investigate the effects of different approaches to enhancing goal pursuit, and studies which investigate different structured goal setting approaches. It also reports on secondary outcomes including goal attainment and healthcare utilisation. There is some very low quality evidence that goal setting may improve some outcomes for adults receiving rehabilitation for acquired disability. The best of this evidence appears to favour positive effects for psychosocial outcomes (i.e. health-related quality of life, emotional status, and self-efficacy) rather than physical ones. Due to study limitations, there is considerable uncertainty regarding these effects however, and further research is highly likely to change reported estimates of effect.

Male infants and infants born small for gestational age are at risk of fine motor delay in infancy

introducing the RISQ to the department. Notes were sampled until 50 RISQ forms were retrieved for each sample. Results: The level of uptake was 100% (n= 46: 25 and 21 patients for each sample). 84.7% of the combined sampled notes had the RISQ at their first appointment with 98.2% present at follow-up appointments (relating to 22 patients). At their first appointments, patients identified an impact on 65.4% of the domains, with missing data (MD) for 7.7%. 38.1% of the domains had written comments with 51.3% patients describing a question or concern (MD=25.6%). Expectations of treatment were described by 71.8% of patients. At follow-up, the level of completion for the impact across the four domains was 97.7% with 73.6% identified as affected and 25.5% having written comments. On-going or new questions/concerns were identified on 27.3% of the follow-up forms, with written questions or concerns about treatment on 7.4% of forms. There was 99.3% compliance for completion of all of the numerical rating scales. Conclusion(s): This notes audit indicated better uptake for the RISQ at follow-up appointments than first, with high levels of completion. Findings from this audit (and concurrent focus groups) resulted in changes to wording of the RISQ and strategies for distribution prior to therapy. For comparison, thesemethods are currently being applied to evaluate engagement in two sites naive to the RISQ. Future research could focus on exploration of the psychometric properties of the RISQ and its role for influencing patient care and outcomes. Implications: The RISQ, a patient-centred questionnaire inviting written comments, previously demonstrated user acceptability: this pragmatic service-evaluation demonstrates high levels of patient engagement. Web-based articles and training videos, and further research (with publication and conference presentations) will need to be undertaken to encourage further uptake and determine its value in clinical practice.