Implementing strategies to improve uptake of patient-reported outcome measures (PROMs) in gender-affirming care: a mixed-methods implementation study.

IMPORTANCE: The Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC) is an evidence-based resource, which was developed in response to international calls for improved patient-reported outcome measure (PROM) implementation in gender-affirming care. The PG-PROM-GAC has the potential to improve PROM implementation; however, its real-world effectiveness has not yet been investigated. OBJECTIVE: Investigate effectiveness and fidelity of three implementation strategies from the PG-PROM-GAC in a real-world gender clinic setting. DESIGN: Interrupted time series mixed-methods study investigating response rates to a PROM deployed alongside implementation strategies from the PG-PROM-GAC; and open-ended feedback on the fidelity and effectiveness of implementation strategies. SETTING: Participants were recruited from a National Health Service (NHS) gender clinic. PARTICIPANTS: Eligible participants were being seen at an NHS gender clinic for an appointment during the study period, and were invited to participate in this study via email. INTERVENTION: Three implementation strategies from the PG-PROM-GAC deployed alongside a PROM. MAIN OUTCOMES AND MEASURES: Response rates were calculated at 2-week intervals, in line with the deployment of each implementation strategy. Open-ended responses were thematically analysed by two researchers following guidance from implementation science and interpretation from Normalisation Process Theory. RESULTS: A total of 28 participants were included in this study with a mean (SD) age of 39 (17) years. In general, participants rated education material for PROMs as the most important for PROM implementation, and accessibility options for PROMs as the second most important. Response rates to PROM completion dropped as the study progressed, as the burden of reviewing implementation strategies increased. Results were used to construct recommendations for future PROM implementation efforts. CONCLUSIONS AND RELEVANCE: The PG-PROM-GAC and implementation strategy materials developed from this study (ie, educational video on PROMs co-developed with key stakeholders) can be used by clinicians, researchers and policymakers to lead PROM implementation efforts in gender-affirming care.

Developing feasible and acceptable strategies for integrating the use of patient-reported outcome measures (PROMs) in gender-affirming care: An implementation study.

OBJECTIVE: Use CFIR guidance to create comprehensive, evidence-based, feasible, and acceptable gender-affirming care PROM implementation strategies. DESIGN, SETTING, PARTICIPANTS: A 3-Phase participatory process was followed to design feasible and acceptable strategies for integrating PROMs in gender-affirming care. In Phase 1, barriers and enablers to PROM implementation for gender-affirming care were identified from a previous systematic review and our prior qualitative study. We used the CFIR-ERIC tool to match previously identified barriers and enablers with expert-endorsed implementation strategies. In Phase 2, implementation strategy outputs from CFIR-ERIC were organised according to cumulative percentage value. In Phase 3, gender-affirming care PROM implementation strategies underwent iterative refinement based on rounds of stakeholder feedback with seven patient and public partners and a gender-affirming healthcare professional. RESULTS: The systematic review and qualitative study identified barriers and enablers to PROM implementation spanning all five CFIR domains, and 30 CFIR constructs. The top healthcare professional-relevant strategies to PROM implementation from the CFIR-ERIC output include: identifying and preparing implementation champions, collecting feedback on PROM implementation, and capturing and sharing local knowledge between clinics on implementation. Top patient-relevant strategies include: having educational material on PROMs, ensuring adaptability of PROMs, and collaborating with key local organisations who may be able to support patients. CONCLUSIONS: This study developed evidence-based, feasible, and acceptable strategies for integrating PROMs in gender-affirming care, representing evidence from a systematic review of 286 international articles, a qualitative study of 24 gender-affirming care patients and healthcare professionals, and iteration from 7 patient and public partners and a gender-affirming healthcare professional. The finalised strategies include patient- and healthcare professional-relevant strategies for implementing PROMs in gender-affirming care. Clinicians and researchers can select and tailor implementation strategies best applying to their gender-affirming care setting.

Patient and healthcare professional perspectives on the Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC): analysis of open-ended responses from patients and healthcare professionals.

IMPORTANCE: Several international calls have been made for evidence-based patient-reported outcome measure (PROM) implementation for gender-affirming care. The Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC) is a resource which can help guide PROM implementation efforts, developed using a three-phase participatory research approach with transgender and gender-diverse (TGD) patients and gender-affirming healthcare professionals. However, thoughts and perspectives from TGD patients and gender-affirming healthcare professionals on the PG-PROM-GAC need to be investigated. OBJECTIVE: Investigate patient and healthcare professional perspectives on the PG-PROM-GAC through analysis of open-ended survey results. DESIGN: Qualitative study analysing open-ended responses from TGD patients and gender-affirming healthcare professionals. SETTING: Participants were recruited from a UK National Health System (NHS) gender clinic. PARTICIPANTS: Patients receiving care at an NHS gender clinic and healthcare professionals working at an NHS gender clinic were eligible for participation. Eligible participants were invited to participate in this study via email. INTERVENTION: Participants were sent an open-ended survey to collect responses on the PG-PROM-GAC. MAIN OUTCOMES AND MEASURES: Data were thematically analysed by two independent researchers and interpreted following guidance from established methods in implementation science. RESULTS: A total of 64 TGD patients and 9 gender-affirming healthcare professionals responded to the open-ended survey (mean (SD) age: 35 (16) and 48 (8), respectively). Four main themes emerged from the data: overall opinions and support for the PG-PROM-GAC, presentation of the PG-PROM-GAC, impact of gender clinic resources on PROM implementation and impact of PROM selection on implementation. Data were used to iterate the PG-PROM-GAC in response to participant feedback. CONCLUSIONS AND RELEVANCE: The PG-PROM-GAC is an acceptable and feasible resource that can be used by clinicians, researchers and policymakers to guide PROM implementation for gender-affirming care settings, helping to align gender-affirming care with patient needs.

Pre- and post-COVID-19 gender trends in authorship for paediatric radiology articles worldwide: a systematic review.

BACKGROUND: Gender inequalities in academic medicine persist despite progress over the past decade. Evidence-based targeted interventions are needed to reduce gender inequalities. OBJECTIVE: This systematic review aimed to investigate the impact of COVID-19 on gender trends in authorship of paediatric radiology research worldwide. MATERIALS AND METHODS: This prospectively registered, PRISMA-compliant systematic review searched the following databases: PubMed, MEDLINE, Web of Science, and Scopus from January 1, 2018, to May 29, 2023, with no restrictions on country of origin. Screening and data extraction occurred independently and in duplicate. Gender of first, last, and corresponding authors were determined using an artificial intelligence-powered, validated, multinational database ( www.genderize.io ). Two time periods were categorised according to the Johns Hopkins Center for Systems Science and Engineering: pre-COVID (prior to March 2020) and peak and post-COVID (March 2020 onwards). One-sample binomial testing was used to analyse proportion of authorship based on gender. Categorical variables were described as frequencies and percentages, and compared using testing chi-square or Fisher exact testing, with a threshold of P<0.05 representing statistical significance. RESULTS: In total, 922 articles were included with 39 countries represented. A statistically significant difference in authorship based on gender persisted during the peak and post-COVID time period (March 2020 onwards) where women represented a statistically significant lower proportion of last (35.5%) and corresponding (42.7%) authors (P<0.001, P=0.001, respectively). Statistically significant differences for first authors were not found in either period (P=0.08 and P=0.48). CONCLUSION: This study identifies differences in gender trends for authorship in paediatric radiology research worldwide. Future efforts to increase authorship by women are needed.

Patient and healthcare professional perspectives on implementing patient-reported outcome measures in gender-affirming care: a qualitative study.

OBJECTIVES: Patient and healthcare professional perspectives are needed to develop a gender-affirming care patient-reported outcome measure (PROM) implementation plan. We aimed to identify top considerations relevant to gender-affirming care PROM implementation from patient and healthcare professional perspectives. DESIGN, SETTINGS AND PARTICIPANTS: This qualitative study conducted in the UK between January and April 2023 includes focus groups with a patient sample diverse in age and gender identity, and a healthcare professional sample diverse in age and role. Established methods in implementation science and the Consolidated Framework for Implementation Research were used to create interview guides, and analyse data. Focus groups were audio recorded, transcribed verbatim and analysed by two independent researchers. Patient and healthcare professional focus groups were conducted separately. PRIMARY OUTCOME MEASURES: Patient and healthcare professional perspectives on PROM implementation were explored through focus groups and until data saturation. RESULTS: A total of 7 virtual focus groups were conducted with 24 participants (14 patients, mean (SD) age, 43 (14.5); 10 healthcare professionals, mean (SD) age, 46 (11.3)). From patient perspectives, key barriers to PROM implementation were mistrust with PROMs, lack of accessibility, burden, and lack of communication on why PROMs are important and how they will help care. From healthcare professional perspectives, key barriers to PROM implementation were lack of accessibility, burden with PROM administration and scoring, costs of implementation (financial and time), and lack of communication on what PROMs are and how they benefit service provision. CONCLUSION: Gender-affirming care PROM implementation must address: patient mistrust with PROMs, accessibility, communication on what PROMs are and how they can be used, reducing burden, and hybridised implementation. These factors may also be applicable to other clinical areas interested in implementing PROMs.

Implementation of Patient-Reported Outcome Measures for Gender-Affirming Care Worldwide: A Systematic Review.

Importance: Gender-affirming care is a key clinical area that can benefit from implementation of patient-reported outcome measures (PROMs). Identifying barriers to and enablers of PROM implementation is needed to develop an evidence-based implementation strategy. Objective: To identify (1) PROMs previously implemented for gender-affirming care and constructs measured, (2) how patients completed PROMs and how results were reported and used, and (3) barriers to and enablers of PROM implementation. Evidence Review: In this systematic review, PubMed, Embase, MEDLINE, PsycINFO, CINAHL, and Web of Science were searched from inception to October 25, 2021, and updated on December 16, 2022. Gray literature was searched through gray literature database, online search engine, and targeted website searching. Inclusion criteria were (1) original articles of (2) a formally developed PROM or ad hoc instrument administered for gender-affirming care to (3) patients accessing gender-affirming care. The Critical Appraisal Skills Programme tool was used to evaluate quality of included studies. This review was registered on PROSPERO (CRD42021233080). Findings: In total, 286 studies were included, representing 85 395 transgender and nonbinary patients from more than 30 countries. A total of 205 different PROMs were used in gender-affirming care. No studies described using an implementation science theory, model, or framework to support PROM deployment. Key barriers to PROM implementation included issues with evidence strength and quality of the PROM, engaging participants, and PROM complexity. Key enablers of PROM implementation included using PROMs validated for gender-affirming care, implementing PROMs able to be deployed online or in person, implementing PROMs that are shorter and reduce patient burden, engaging key stakeholders and participants as part of developing an implementation plan, and organizational climate. Conclusions and Relevance: In this systematic review of barriers to and enablers of PROM implementation in gender-affirming care, PROM implementation was inconsistent and did not follow evidence-based approaches in implementation science. There was also a lack of patient input in creating implementation strategies, suggesting a need for patient-centered approaches to PROM implementation. Frameworks created from these results can be used to develop evidence-based PROM implementation initiatives for gender-affirming care and have potential generalizability for other clinical areas interested in implementing PROMs.

Impact of Completing FACE-Q Craniofacial Module Scales on Children and Young Adults with Facial Differences: An International Study.

BACKGROUND: The FACE-Q Craniofacial Module measures outcomes that matter to patients with diverse craniofacial conditions. However, it is not known whether completing a patient-reported outcome measure (PROM) has a negative impact on patients, particularly children. This study aims to investigate the impact of completing the FACE-Q Craniofacial Module and identify factors associated with a negative impact. METHODS: Participants were between 8 and 29 years of age, had a facial difference, and completed at least one module of the FACE-Q Craniofacial Module as part of the international field-test study between December of 2016 and 2019. Participants were asked three questions: "Did you like or dislike answering this questionnaire?" "Did answering these questions change how you feel about how you look?" and "Did answering this questionnaire make you feel unhappy or happy?" Univariate and multivariable logistic regression analyses were used to evaluate variables associated with a negative response. RESULTS: The sample included 927 participants. Most patients responded neutrally to all impact questions: 42.7% neither disliked nor liked the questionnaire; 76.6% felt the same about how they looked; and 72.7% felt neither unhappy nor happy after completion. Negative responses represented a small proportion of patients across all three impact questions (<13.2%). Increased craniofacial severity, more scales completed, and lower scores on all FACE-Q scales were associated with negative responses for all three impact questions ( P <0.01). CONCLUSIONS: This study provides evidence that the FACE-Q Craniofacial Module is acceptable for most participants. Clinicians and study investigators should follow up with patients after completing this PROM to address areas of concern in scale scores. CLINICAL QUESTION/LEVEL OF EVIDENCE: Risk, III.

Computerized adaptive testing of symptom severity: a registry-based study of 924 patients with trapeziometacarpal arthritis.

We aimed to develop a computerized adaptive testing (CAT) version of the 11 item Patient Evaluation Measure (PEM), using an item response theory model. This model transformed the ordinal scores into ratio-interval scores. We obtained PEM responses from 924 patients with trapeziometacarpal osteoarthritis to build a CAT model and tested its performance on a simulated cohort of 1000 PEM response sets. The CAT achieved high precision (median standard error or measurement 0.26) and reduced the number of questions needed for accurate scoring from 11 to median two. The CAT scores and item-response-theory-based 15-item PEM scores were similar, and a Bland-Altman analysis demonstrated a mean score difference of 0.2 between the CAT and the full-length PEM scores on a scale from 0 to 100. We conclude that the CAT substantially reduced the burden of the PEM while also harnessing the validity of item response theory scoring.

Patient-reported outcome measures for patients with nail conditions: a systematic review of the psychometric evidence.

Nail conditions have an impact on appearance, function, and quality of life of patients. Patient reported outcome measures (PROMs) are important tools for evaluating treatment success from the patient perspective. It is important to understand the quality of PROMs to help guide selection of appropriate tools. The aim of this study was to critically appraise the psychometric properties of nail-specific PROMs using COSMIN guidelines. A systematic review was conducted in May 2019 to identify development and validation articles for nail-specific PROMs. Abstracts and subsequent full-texts were screened by two reviewers for eligibility. Data were extracted for study characteristics and psychometric properties. The risk of bias checklist was completed, and ratings applied to psychometric properties as per COSMIN guidelines. Modified Grading of Recommendations Assessment, Development and Evaluation (GRADE) criteria were applied based on the risk of bias checklist to assess methodological quality. The review identified 3289 articles of which 430 full-text articles were screened, nine of which met eligibility criteria. Included papers were for seven PROMs and in total reported on 31of 49 possible measurement properties. Of the 31 measurement properties reported, nine (29%) were rated as insufficient or indeterminate. The modified GRADE methodological quality rating was low or very low for 16 (32.7%) measurement properties, and 18 (36.7%) measurement properties were not described by any PROM. Currently there are no nail-specific PROMS available that demonstrate adequate validity, reliability, or responsiveness, according to COSMIN guidelines. Further research is required to assess missing or insufficiently tested measurement properties in all the PROMs identified.

Canada's history of failing to provide medical care for Indigenous children.

In December 2007, the House of Commons unanimously supported Jordan's Principle, a commitment that all First Nations children would receive the health care products, social services, and supports, and education they need, in memory of Jordan River Anderson. However, the process of applying for Jordan's Principle was convoluted and not transparent, leaving several cases not being responded to. The Canadian Human Rights Tribunal found the definition and implementation of Jordan's Principle to be racist and discriminatory in 2016, ordering the Canadian government to make immediate changes. Failing to make changes to Jordan's Principle, the Canadian government was found to be noncompliant with the Canadian Human Rights Tribunal orders in 2018. This article provides one case example of Jordan's Principle that was not responded to, details on the current status of Jordan's Principle, and information on the recent implementation of the Act respecting First Nations, Inuit and Métis children, youth and families.

Can Undergraduate Students Help Change Older Adults' Confidence for Making Nutrition-Related Decisions in a 45-Minute Nutrition Workshop?

Purpose: The Social Cognitive Theory (SCT) suggests health behaviour can be modified by enhancing knowledge of health benefits and outcome expectations of changing behaviour, improving self-efficacy (confidence), and developing goals to overcome barriers to behaviour change. This study aimed to determine the impact of student-led nutrition workshops on participants' confidence related to SCT constructs for making dietary choices that align with evidence-based nutrition recommendations.Methods: Level-4 Science students developed and delivered 9 workshops on nutrition recommendations for the prevention and management of age-related diseases. Participants attending the workshops completed pre- and post-surveys to assess SCT constructs. For each SCT construct, participants rated their confidence on a 10-point Likert scale. The number (%) of participants who rated their confidence as ≥8/10 on the pre- and post-surveys were compared using the χ2 test.Results: Sixty-three community members (60% female, mean ± SD age 71 ± 7 years) attended the workshops. The number of participants rating confidence as ≥8/10 for each SCT construct increased after the workshops (P < 0.05).Conclusion: Undergraduate students can positively influence community members' confidence for making nutrition-related decisions. Involving students in interventions where SCT-structured workshops are used may help conserve health care resources and reach older adults who may not have access to dietitian services.

The Impact of Nail Psoriasis and Treatment on Quality of Life: A Systematic Review.

At least 80% of patients with psoriasis will have nail involvement during their lifetimes. Understanding quality of life (QoL) impact of this condition and associated treatments is of utmost importance. Study objectives were to review the available literature describing patient-reported QoL outcomes in nail psoriasis and relationship with disease severity and treatment. A literature search was performed for English-language articles published prior to August 1, 2020. Articles were included in the review if primary data and validated patient-reported outcome measures assessing QoL were presented, and nail involvement was specifically examined. Fifteen studies were included in the final analysis. Patients with nail psoriasis had higher Psoriasis Area Severity Index and Dermatology Life Quality Index scores than those with psoriasis without nail involvement. The largest percent improvement in QoL score was associated with adalimumab. Studies investigating topicals, intralesionals, and systemic treatments were excluded since only biologic studies utilized validated patient-reported outcome measures. This review affirms that nail psoriasis is physically and emotionally distressing, warranting prompt treatment. Increased efforts are needed to address the impact of treatment on patient QoL using validated outcome measures that assess cosmetic, physical, and social problems.

A Mixed-Methods Feasibility Study of Integrated Pediatric Complex Care: Experiences of Parents With Care and the Value of Parent Engagement in Research.

Introduction: Children with medical complexity (CMC) are among the most vulnerable children in society. These children and their families face challenges of fragmented care and are at risk for poorer health outcomes. Families with CMC play a vital role in providing care and navigating the complexities of healthcare systems. It is essential to understand the best ways to engage these families in research to improve the care and optimize the health of CMC. Objectives: This study explored parent engagement within the context of a feasibility study evaluating an Integrated Tertiary Complex Care (ITCC) clinic created to support CMC closer to home. This paper aimed: (1) to understand the family experiences of care and (2) to explore parent engagement in the study. Method: This mixed-methods feasibility study included three components. First, feedback from focus groups was used to identify the common themes that informed interviews with parents. Second, one-on-one interviews were conducted with parents to explore their experience with care, such as the ITCC clinic, using an interpretative description approach. Third, the questionnaires were completed by parents at baseline and 6-months post-baseline. These questionnaires included demographic and cost information and three validated scales designed to measure the caregiver strain, family-centered care, and parental health. The recruitment rate, percentage completion of the questionnaires, and open-ended comments were used to assess parent engagement in the study. Results: The focus groups involved 24 parents, of which 19 (14 women, five men) provided comments. The findings identified the importance of Complex Care Team (CC Team) accessibility, local access, and family-centered approach to care. The challenges noted were access to homecare nursing, fatigue, and lack of respite affecting caregiver well-being. In this study, 17 parents participated in one-on-one interviews. The identified themes relevant to care experience were proximity, continuity, and coordination of care. The parents who received care through the ITCC clinic appreciated receiving care closer to home. The baseline questionnaires were completed by 44 of 77 (57%) eligible parents. Only 24 (31%) completed the 6-month questionnaire. The challenges with study recruitment and follow-up were identified. Conclusion: Family engagement was a challenging yet necessary endeavor to understand how to tailor the healthcare to meet the complex needs of families caring for CMC.

Effect of onychomycosis and treatment on patient-reported quality-of-life outcomes: A systematic review.

BACKGROUND: Onychomycosis is the most common nail disorder, often causing physical, emotional, and aesthetic consequences. The effect of both the condition itself and treatment on quality of life has not been well studied. OBJECTIVE: The objectives of this study were to systematically review the available literature describing the effect of onychomycosis and treatment on quality of life. METHODS: We performed a search of the onychomycosis literature published before April 13, 2020. Articles were included in the review if primary data were presented, patient-reported outcome measures were used, and onychomycosis was specifically examined. RESULTS: Thirty studies were included in the final analysis. Poorest quality-of-life scores were associated with women and fingernail involvement. Quality-of-life scores improved from baseline with all treatment types; there were greater improvements reported with oral treatments compared with topical ones. CONCLUSIONS: This review affirms that onychomycosis significantly influences quality of life, warranting effective treatment. All treatments resulted in quality-of-life improvements; however, studies on oral and topical therapies were of higher quality than those evaluating devices. Increased efforts are needed to understand the effect of the disease and therapy as assessed by validated, nail-specific outcome measures that accurately assess patients' cosmetic, physical, and social difficulties.

Mortality at For-Profit Versus Not-For-Profit Hemodialysis Centers: A Systematic Review and Meta-analysis.

We conducted a systematic review and meta-analysis to assess differences in risk-adjusted mortality rates between for-profit (FP) and not-for-profit (NFP) hemodialysis facilities. We searched 10 databases for studies published between January 2001 to December 2019 that compared mortality at private hemodialysis facilities. We included observational studies directly comparing adjusted mortality rates between FP and NFP private hemodialysis providers in any language or country. We excluded evaluations of dialysis facilities that changed their profit status, studies with overlapping data, and studies that failed to adjust for patient age and some measure of clinical severity. Pairs of reviewers independently screened all titles and abstracts and the full text of potentially eligible studies, abstracted data, and assessed risk of bias, resolving disagreement by discussion. We included nine observational studies of hemodialysis facilities representing 1,163,144 patient-years. In pooled random-effects meta-analysis, the odds ratio of mortality in FP relative to NFP facilities was 1.07 (95% CI 1.04-1.11). Patients at FP hemodialysis facilities have 7 percent greater odds of death annually than patients with similar risk profiles at NFP facilities. Approximately 3,800 excess deaths might be averted annually if U.S. FP hemodialysis operators matched NFP mortality rates.

Concepts Important to Patients With Facial Differences: A Qualitative Study Informing a New Module of the FACE-Q for Children and Young Adults.

OBJECTIVE: The concepts important to children and young adults who undergo treatments for facial differences are not well-defined. Measurement of treatment outcomes from the patient's perspective is necessary to ensure goals of treatment are met. We aimed to identify concepts important to children and young adults with facial differences through a qualitative study. DESIGN: An interpretive description qualitative approach was followed. Semistructured interviews were conducted, transcribed verbatim, and coded using a line-by-line approach. Qualitative analysis led to the development of a conceptual framework of outcomes important to patients. SETTING: Interviews were conducted in Canada and the United Kingdom at home, by telephone, or in the hospital. PARTICIPANTS: Participants (N = 72) were recruited between May and June 2014 from craniofacial clinics at the Hospital for Sick Children (Toronto) and Great Ormond Street Hospital (London). Participants included anyone with a visible and/or functional facial difference aged 8 to 29 years and fluent in English, excluding patients with a cleft. The sample included 38 females and 34 males, with a mean age of 13.9 years, and included 28 facial conditions (11 facial paralysis, 18 ear anomalies, 26 skeletal conditions, and 17 soft tissue conditions). RESULTS: Analysis led to identification of important concepts within 4 overarching domains: facial appearance, facial function, adverse effects of treatment, and health-related quality of life (psychological, social, and school function). CONCLUSIONS: Our study provides an understanding of concepts important to children and young adults with facial differences.

Patient Satisfaction with Treatment for Onychocryptosis: A Systematic Review.

Onychocryptosis, or ingrown nail, is a common condition in which the nail plate penetrates the nail fold, often resulting in inflammation and pain. Nonsurgical and surgical treatments are utilized, but patient satisfaction with these therapies has not been well studied. The purpose of this study was to systematically review the available literature describing patient-reported outcomes of onychocryptosis treatments. We performed a search of the literature published prior to May 22, 2019. Articles were included in the review if primary data were presented, patient-reported outcome measures (PROMs) were used, and nail involvement was specifically examined. From the initial search, 18 studies were included in the final analysis. Patients receiving both nonsurgical and surgical interventions reported high levels of overall satisfaction; however, most studies used ad hoc measures rather than validated PROMs, providing little granular information on the impact of treatment on quality of life (QoL). This review affirms that treatment for onychocryptosis results in satisfactory outcomes for patients; however, increased efforts are needed to understand the impact of therapy on patient QoL as assessed by validated outcome measure that accurately assess patients' cosmetic, physical, and social difficulties.

Designing a Mission statement Mobile app for palliative care: an innovation project utilizing design-thinking methodology.

BACKGROUND: Eliciting individual values and preferences of patients is essential to delivering high quality palliative care and ensuring patient-centered advance care planning. Despite advance care planning conserving healthcare costs by up to 36%, reducing psychological distress of patients and caregivers, and ensuring palliative care delivery in line with patient wishes, less than 33% of adults engage in it. We aimed to develop a mobile application intervention to address the challenges related to advance care planning and improve the delivery of palliative care. METHODS: Design-thinking methodology was used to develop a mobile application, in response to issues prominently identified in current palliative care literature. RESULTS: Issues surrounding communication of patient values from both the patient and provider side is identified as a main issue in palliative care. We designed a mobile application intervention prototype to address this. CONCLUSIONS: Our "Mission Statement" mobile application will allow patients to create a mission statement identifying what they want their care team to know about them, as well as space to identify important values and preferences. Patients will be able to evolve their mission statement and values and preferences over the course of their palliative care journey through the application. Design-thinking methodology is an effective tool to drive healthcare innovation and bridge the gap between research findings and implementation.

Conclusions from surveys may not consider important biases: a systematic survey of surveys.

OBJECTIVES: Surveys can inform important health care questions. However, should decision-makers believe strong conclusions that authors of surveys report? Objectives of this systematic survey of surveys are to describe the characteristics and conduct of surveys and investigate the association of the conduct with the conclusions. STUDY DESIGN AND SETTING: We randomly selected 180 surveys published over 1 year in core clinical journals that included a self-report instrument to elicit knowledge, attitudes, behaviors, and experiences regarding health. Study selection and abstraction was independent and in duplicate. We calculated frequencies of descriptive data. We conducted multivariable logistic regression analyses to assess the association of strong or weak conclusions with survey methods. RESULTS: Our results suggest that authors who validate questions in their survey make strong conclusions. We found that strong conclusions may not be associated with response rates or number of respondents. However, it did not appear that journal impact factor was related to strong conclusions. CONCLUSION: Our results suggest that users of surveys should not rely on the conclusions of authors. A critical appraisal tool for users of surveys and guidance for authors about factors to consider when making conclusions would be helpful.