Measurement properties and interpretability of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure.

BACKGROUND: Patient-reported outcome measures (PROMs) are crucial for assessing the impact of dermatological conditions on patients' lives, but the existing dermatology-specific PROMs are not recommended for use according to the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN). We developed the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure in partnership with patients. It has strong evidence of content validity, structural validity, internal consistency, acceptability, and feasibility. OBJECTIVES: To test PRIDD's remaining measurement properties and establish the interpretability of scores against the COSMIN criteria using classic and modern psychometric methods. METHODS: A global longitudinal study consisting of two online surveys administered two to four weeks apart. Adults (≥ 18 years) living with a dermatological condition were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) membership network. Participants completed PRIDD, a demographics questionnaire, and other related measures including the Dermatology Life Quality Index (DLQI). We tested PRIDD's criterion validity, construct validity and responsiveness (Spearman's ρ, independent-samples t-tests and ANOVA), test-retest reliability (interclass correlation coefficient [ICC]), measurement error (Smallest Detectable Change or Limits of Agreement [LoA], distribution-based Minimally Important Change [MIC]), floor and ceiling effects (number of minimum and maximum scores and Person-Item Location Distribution Maps), score bandings (κ coefficient of agreement) and anchor-based MIC. RESULTS: 504 patients with 35 dermatological conditions from 38 countries participated. Criterion validity (ρ = 0.79), construct validity (76% hypotheses met), test-retest validity (ICC = 0.93), and measurement error (LoA = 1.3 < MIC = 4.14) were sufficient. Floor and ceiling effects were in the acceptable range (< 15%). Score bandings were determined (κ = 0.47), however, the anchor-based MIC could not be calculated due to an insufficient anchor. CONCLUSIONS: PRIDD is a valid and reliable tool to evaluate the impact of dermatological disease on patients' lives in research and clinical practice. It is the first dermatology-specific PROM to meet the COSMIN criteria. These results support the value of developing and validating PROMs with a patient-centred approach and using classic and modern psychometric methods. Further testing of responsiveness and MIC, cross-cultural translation, linguistic validation, and global data collection are planned.

Patient prioritisation of items to develop the Patient-Reported Impact of Dermatological Diseases measure: A global Delphi study.

BACKGROUND: The Global Research on the Impact of Dermatological Diseases (GRIDD) project is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. PRIDD measures the impact of dermatological conditions on the patient's life. OBJECTIVES: This study aimed to seek consensus from patients on which items to prioritize for inclusion in PRIDD. METHODS: A modified, two-round Delphi study was conducted. Adults (≥18 years) with dermatological conditions were recruited. The survey consisted of a demographic's questionnaire and 263 potential impact items in six languages. Quantitative data used Likert-type ranking scales and analysed against consensus criteria. Qualitative data collected free text responses for additional feedback and a framework analysis was conducted. RESULTS: 1154 people representing 90 dermatological conditions from 66 countries participated. Items were either removed (n = 79), edited (n = 179) or added (n = 2), based on consensus thresholds and qualitative feedback. Results generated the first draft of PRIDD with 27 items across five impact domains. CONCLUSION: This Delphi study resulted in the draft version of PRIDD, ready for psychometric testing. The triangulated data helped refine the existing conceptual framework of impact. PRIDD has since been pilot tested with patients and is currently undergoing psychometric testing.

Nurses' coping strategies caring for patients during severe viral pandemics: A mixed-methods systematic review.

BACKGROUND: Nurses play an essential role in responding to severe viral disease which bring considerable challenges to their personal and professional well-being. This subsequently can affect the delivery of care and healthcare systems' organisational capacity to respond. Understanding nurses' experiences of these challenges will help inform healthcare policies. AIM: To explore the experiences and coping strategies of nurses caring for patients during severe viral disease pandemics. DESIGN: A mixed-methods systematic review informed by the Joanna Briggs Institute (JBI) methodology. METHODS: A mixed-methods systematic review. Five electronic databases Medline, CINAHL, PsychInfo, ASSIA and Scopus were searched on 4th April 2021. Results were reported in accordance with PRISMA. The findings were analysed and reported in the context of the Self-Regulatory Common-Sense Model. RESULTS: In total, 71 peer-review primary research articles describing nurses' experiences of caring for patients during SARS, MERS, Swine flu H1N1, Avian influenza or SARS-CoV-2 / COVID-19 published in English from 2003 to 2021 were included. We found links between nurses' perception of the health threats, their emotional reactions, and coping strategies. Perceived health threats were influenced by organisational factors including frequent changes in clinical guidelines and workplace protocols, onerous workloads and working hours, unavailability of PPE, and lack of knowledge and training in pandemic management. These impacted nurses' physical, psychological and social well-being. Nurses also reported helpful and unhelpful coping strategies to manage the health threats. CONCLUSIONS: It is vital for stakeholders, policymakers, government and healthcare institutions to recognise and monitor the wider impact on healthcare workers from health emergencies. In addition, support to develop and implement effective systems and individual mechanisms to offset the anticipated impact pre and post pandemics/epidemics is needed. Our findings can inform those strategies for similar future health emergencies. RELEVANCE TO CLINICAL PRACTICE: Nurses are often the first point of contact in providing direct care to patients, hence they are at high risk of being infected. The findings from this review can help managers and policymakers in developing programmes to enhance resilience in the nursing workforce. NO PATIENT OR PUBLIC CONTRIBUTION: This was a literature review study.

Further refinement of the Patient-Reported Impact of Dermatological Diseases (PRIDD) measure using classical test theory and item response theory.

BACKGROUND: Existing dermatology-specific Patient-Reported Outcome Measures (PROMs) do not fully capture the substantial physical, psychological and social impact of dermatological conditions on patients' lives and are not recommended for use according to the COSMIN criteria. Most were developed with insufficient patient involvement and relied on classical psychometric methods. We are developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure for use in research and clinical practice in partnership with patients. OBJECTIVES: To examine the factor structure of PRIDD, determine the definitive selection of items for each subscale, and establish structural validity and internal consistency through classical and modern psychometric methods. METHODS: Two cross-sectional online surveys were conducted. Adults (≥ 18 years) worldwide living with a dermatological condition were recruited through the membership network of the International Alliance of Dermatology Patient Organizations (GlobalSkin). They completed the PRIDD questionnaire and a demographics questionnaire via an online survey. We examined missing data and distribution of scores for each item. The factor structure was assessed using confirmatory and exploratory factor analysis (Survey 1). Internal consistency was examined using Cronbach's α. Rasch measurement theory analyses were conducted, including iterative assessment of rating scale function, fit to the Rasch model, unidimensionality, reliability, local dependence, targeting and differential item functioning (DIF) (Surveys 1 and 2). RESULTS: Participants in Surveys 1 and 2 numbered 483 and 504 people, respectively. All items had ≤ 3% missing scores and all five response options were used. A four-factor model showed the best fit. PRIDD and all four subscales were internally consistent but showed some misfit to the Rasch measurement model. Adjustments were made to rectify disordered thresholds, remove misfitting items, local dependency and DIF, and improve targeting. The resulting 16-item version and subscales fit the Rasch model, showed no local dependency or DIF at the test level, and were well targeted. CONCLUSIONS: This field test study produced the final PRIDD measure, consisting of 16 items across four domains. The data triangulated and refined the conceptual framework of impact and provide evidence of PRIDD's structural validity and internal consistency. The final step in the development and validation of the PRIDD measure is to test the remaining measurement properties.

Definitions and measures of long COVID fatigue in adults: a scoping review protocol.

OBJECTIVE: The aim of this scoping review is to investigate how fatigue is defined and measured in adults with long COVID. INTRODUCTION: Following COVID-19 infection, 10% to 20% of individuals experience persisting symptoms for a minimum of 3 months; this is commonly known as long COVID. Fatigue is one of the most prevalent symptoms of long COVID, but there is currently no consistently applied definition of long COVID fatigue. To advance our understanding of long COVID fatigue, we must first identify the current definitions and measures being used to describe and mesure this condition. INCLUSION CRITERIA: This review will consider published and unpublished studies involving adults (≥18 years) that define and/or measure long COVID fatigue. Papers using quantitative or qualitative designs will be included. Conference abstracts, editorials, and opinion papers will be excluded. METHODS: Published studies from January 2020 onwards will be searched for across MEDLINE (Ovid), CINAHL (EBSCOhost), Embase (Ovid), Scopus, PsycINFO (Ovid), Web of Science Core Collection, Epistemonikos, and Cochrane Central Register of Controlled Trials (CENTRAL). Dimensions, Overton, and ProQuest Dissertations and Theses will be searched for unpublished literature. Eligible records will be de-duplicated, and 2 independent reviewers will carry out title, abstract, and full-text screening. A data extraction tool will be pilot tested on a small number of papers, then modified as necessary, with any modifications detailed in the scoping review. Findings will be presented in tables and charts, supported by a narrative summary. REVIEW REGISTRATION: Open Science Framework https://osf.io/hnf8z.

Registered Nurses' and nursing students' perspectives on moral distress and its effects: A mixed-methods systematic review and thematic synthesis.

AIM: To examine Registered Nurses (RNs') and nursing students' perspectives on factors contributing to moral distress and the effects on their health, well-being and professional and career intentions. DESIGN: Joanna Briggs Institute mixed-methods systematic review and thematic synthesis. Registered in Prospero (Redacted). METHODS: Five databases were searched on 5 May 2021 for studies published in English since January 2010. Methodological quality assessment was conducted in parallel with data extraction. RESULTS: Searches yielded 2343 hits. Seventy-seven articles were included. Most were correlational design and used convenience sampling. Studies were mainly from North America and Asia and situated in intensive and critical care settings. There were common, consistent sources of moral distress across continents, specialities and settings. Factors related to perceived inability or failure to enact moral agency and responsibility in moral events at individual, team and structural levels generated distress. Moral distress had a negative effect on RNs health and psychological well-being. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution to this systematic review.

Evidence of the content validity, acceptability, and feasibility of a new Patient-Reported Impact of Dermatological Diseases measure.

Background: The Global Research on the Impact of Dermatological Diseases (GRIDD) team is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure of the impact of dermatological conditions on the patient's life, in partnership with patients. To develop PRIDD, we conducted a systematic review, followed by a qualitative interview study with 68 patients worldwide and subsequently a global Delphi survey of 1,154 patients to ensure PRIDD items were meaningful and important to patients. Objective: To pilot test PRIDD with patients with dermatological conditions, focusing on its content validity (comprehensiveness, comprehensibility, and relevance), acceptability, and feasibility. Methods: We conducted a theory-led qualitative study using the Three-Step Test-Interview method of cognitive interviewing. Three rounds of semi-structured interviews were conducted online. Adults (≥ 18 years) living with a dermatological condition and who spoke English sufficiently to take part in the interview were recruited through the International Alliance of Dermatology Patient Organizations' (GlobalSkin) global membership network. The topic guide met the gold-standard COSMIN (Consensus-based Standards for the Selection of Health Measurement Instruments) standards for cognitive interviewing. Analysis followed the thematic analytical model of cognitive interviewing. Results: Twelve people (58% male) representing six dermatological conditions from four countries participated. Overall, patients found PRIDD to be comprehensible, comprehensive, relevant, acceptable, and feasible. Participants were able to discern the conceptual framework domains from the items. Feedback resulted in: the recall period being extended from 1 week to 1 month; removal of the 'not relevant' response option; and changes to the instructions and item ordering and wording to improve clarity and increase respondents' confidence in their ability to respond. These evidence-based adjustments resulted in a 26-item version of PRIDD. Conclusion: This study met the gold-standard COSMIN criteria for the pilot testing of health measurement instruments. The data triangulated our previous findings, in particular the conceptual framework of impact. Our findings illuminate how patients understand and respond to PRIDD and other patient-reported measurement instruments. The results of comprehensibility, comprehensiveness, relevance, acceptability, and feasibility of PRIDD provide evidence of content validity from the target population. The next step in the development and validation of PRIDD is psychometric testing.

A mixed methods systematic review of digital interventions to support the psychological health and well-being of people living with dermatological conditions.

Background: Dermatological conditions can have a substantial impact on psychological as well as physical health yet dedicated face-to-face psychological support for patients is lacking. Thus, individuals may require additional support to self-manage dermatological conditions effectively. Digital technology can contribute to long-term condition management, but knowledge of the effectiveness of digital interventions addressing psychological (cognitive, emotional, and behavioural) aspects of dermatological conditions is limited. Objectives: To identify, determine the effectiveness, and explore people's views and experiences of digital interventions supporting the psychological health of people with dermatological conditions. Methods: A mixed methods systematic review informed by JBI methodology. The protocol was registered on PROSPERO. Eight electronic databases were searched for papers written between January 2002 and October 2021. Data screening and extraction were conducted in Covidence. The methodological quality of studies were scrutinised against JBI critical appraisal tools. Intervention characteristics were captured using the Template for Intervention Description and Replication checklist and guide. Data were synthesised using a convergent segregated approach. The results were reported in a narrative summary. Results: Twenty-three papers were identified from 4,883 references, including 15 randomised controlled trials. Nineteen interventions were condition-specific, 13 were delivered online, 16 involved an educational component, and 7 endorsed established, evidence-based therapeutic approaches. Improvements in knowledge, mood, quality of life, the therapeutic relationship, and reduced disease severity in the short to medium term, were reported, although there was substantial heterogeneity within the literature. Thirteen studies captured feedback from users, who considered various digital interventions as convenient and helpful for improving knowledge, emotion regulation, and personal control, but technical and individual barriers to use were reported. Use of established qualitative methodologies was limited and, in some cases, poorly reported. Conclusion: Some web-based digital psychological interventions seem to be acceptable to people living with mainly psoriasis and eczema. Whilst some digital interventions benefitted cognitive and emotional factors, heterogeneity and inconsistencies in the literature meant definitive statements about their effectiveness could not be drawn. Interdisciplinary and patient-centred approaches to research are needed to develop and test quality digital interventions supporting the psychological health of adults living with common and rare dermatological conditions. Systematic review registration: [https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=285435], identifier [CRD42021285435].

Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study.

Existing patient-reported outcome measures cannot comprehensively capture the full impact of living with a dermatological condition. The aim of this study was to develop a conceptual framework on which to build a new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Adults (≥ 18 years of age) living with a dermatological condition, worldwide and/or representatives from a patient organization recruited via a global patient organization network, were invited to an individual or group interview. Data were analyzed thematically. Sixty-five people from 29 countries, representing 29 dermatological conditions, participated. Key themes were: (i) impacts at the individual, organizational and societal levels; (ii) impacts were point-in-time and cumulative; and (iii) impact is a multifaceted construct, with two subthemes (iiia) common impacts and (iiib) psychological and social impacts are most significant. The conceptual framework shows that impact is a multifaceted concept presenting across physical, psychological, social, financial, daily functioning and healthcare, and provides the basis for co-constructing the PRIDD with patients.

Online survey comparing coping responses to SARS-CoV-2 by people with and without existing health conditions in the UK.

OBJECTIVES: To investigate the impact of SARS-CoV-2 on self-reported mood, coping and health behaviours of people living with existing health conditions in the UK to understand how to improve coping responses to the threat of SARS-CoV-2. DESIGN: Quantitative design using a cross-sectional survey. SETTING: Online survey in the UK. PARTICIPANTS: UK adults (18+ years) were eligible to participate. A total of 9110 people participated. Of these, 4377 (48%) reported at least one existing health condition, 874 (10%) reported having two or more existing conditions, and 715 (8%) reported having an existing mental health condition. PRIMARY AND SECONDARY OUTCOME MEASURES: Multivariable linear regression and sequential multiple mediation analysis were used to estimate differences in average scores for active and avoidant coping response scores due to pre-existing health conditions, and to investigate the extent to which these differences are explained by differences in perceptions, beliefs, concerns and mood. RESULTS: People with pre-existing physical (+1.11 higher; 95% CI 0.88 to 1.34) and especially mental health conditions (3.06 higher; 95% CI 2.65 to 3.48) reported poorer health and used more avoidant coping compared with healthy participants. Under some strong untestable assumptions, we estimate that experiencing low mood or concern related to SARS-CoV-2 mostly explained the relationship between existing health conditions and avoidant coping. CONCLUSION: Psychological support and interventions including behaviour change are required to mitigate the psychological burden of the SARS-CoV-2 pandemic and increase autonomy in people with and without pre-existing conditions during this highly uncertain time. Psychologists are well placed to support clinicians and people with existing health conditions to minimise the psychological impact of SARS-CoV-2, in order to alleviate the subsequent strain on healthcare services.

Covid-19 Coping Survey: an In-depth Qualitative Analysis of Free-Text Responses from People With and Without Existing Health Conditions in the UK.

BACKGROUND: There is currently a lack of qualitative research exploring how cognitive and emotional reactions to the threat of SARS-CoV-2 affected the health behaviours of people living with and without pre-existing mental and physical health conditions. We aimed to investigate how the threat of SARS-CoV-2 influenced the thoughts, feelings and health behaviours of people with and without pre-existing health conditions in the UK. METHODS: A cross-sectional online survey of UK adults (aged 18 and over). Free-text responses were analysed using a qualitative framework approach guided by the Common-Sense Model of Self-Regulation. RESULTS: Of the 9110 respondents, 2763 participants provided at least one free-text response. Three main themes were derived from the data. Theme one, locus of control, reports on the extent to which people felt in control during the first wave of the pandemic. Theme two, emotional impact, conveys how individuals felt and how people's personal circumstances made them more vulnerable to experiencing negative emotions during the pandemic. Theme three, coping strategies, describes common health-protective and health-threatening behaviours performed by individuals, as well as the importance of social connectedness, the social context and the need for collective action during the first national lockdown. CONCLUSION: Complex psychological interventions including behaviour change are required to mitigate the psychological burden of the SARS-CoV-2 pandemic and increase autonomy in people with and without pre-existing conditions during this highly uncertain time. Behavioural scientists can support governments and public health agencies to develop evidence-based communication and behaviour change strategies that support people to address unhelpful beliefs and emotions and strengthen coping abilities as the UK moves through and beyond the SARS-CoV-2 pandemic.

Patient-Reported Outcome Measures in Dermatology: A Systematic Review.

By relying on data from existing patient-reported outcome measures of quality of life, the true impact of skin conditions on patients' lives may be underestimated. This study systematically reviewed all dermatology-specific (used across skin conditions) patient-reported outcome measures and makes evidence-based recommendations for their use. The study protocol is registered on PROSPERO (CRD42018108829). PubMed, PsycInfo and CINAHL were searched from inception to 25 June 2018. The Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patient-reported outcome measures were assigned to category A (ready for use without further validation), 31 to category B (recommended for use, but only with further validation) and 5 to category C (not recommended for use). There is no gold-standard dermatology-specific patient-reported outcome measure that can be recommended or used without caution. A new measure that can comprehensively capture the impact of dermatological conditions on the patient's life is needed.

Implementation of the PsoWell™ Model for the Management of People with Complex Psoriasis.

The Psoriasis and Well-being (PsoWell)™ training programme, incorporating motivational interviewing, improves clinicians' knowledge and skills to manage complex psoriasis, including behaviour change. The aims of this study were to deliver the PsoWell™ training programme to dermatology specialists, and to evaluate the acceptability and feasibility of implementing the PsoWell™ model across dermatology services. Framework analysis of 19 qualitative semi-structured interviews was performed, following delivery of nine, 1-day PsoWell™ training days involving 119 participants. Two themes were identified: "Perceptions and Priorities" and "Awareness", sub-divided into: "Awareness Not Competence" and "Increasing Awareness". The PsoWell™ model was found to be acceptable and feasible to implement across dermatology settings. Participants were more skilled and motivated to address psycho-logical issues, including behaviour change, but wanted further training to ensure competency. The trainees claimed that scepticism among some colleagues regarding whole-patient management might prevent uptake. Data show-ing the impact on health outcomes are needed and might overcome scepticism. Remote consultation could adopt the PsoWell™ approach.