Item development for a patient-reported measure of compassionate healthcare in action.

BACKGROUND: Compassionate care is a fundamental component of healthcare today; yet, many measures of compassionate care are subjective in focus and lack clarity around what compassionate care looks like in practice. Measures mostly relate to physical healthcare settings, neglecting mental healthcare. They also lack significant involvement of people with lived experience (PLE) of healthcare delivery in their development. This study aimed to begin the process of developing a new patient-reported measure, one that captures the observable actions of compassionate care delivery or 'compassionate healthcare in action' by any healthcare professional working in any care setting. The study involves PLE of healthcare delivery, both patients and staff, throughout. METHODS: A multistage mixed-methods scale development process was followed. First, items were derived inductively from reflexive thematic analysis of patient and clinician interviews about what compassionate care meant to them (n = 8), with additional items derived deductively from a literature review of existing measures. Next, a panel of patient, clinician and researcher experts in compassionate care was recruited (Round 1: n = 33, Round 2: n = 29), who refined these items in a two-round modified online Delphi process. RESULTS: Consensus was reached on 21 items of compassionate care in action relating to six facets: understanding, communication, attention, action, emotional sensitivity and connection. These items will form the basis for further scale development. CONCLUSIONS: This item development work has laid the foundation of a potential new tool to systematically measure what compassionate healthcare in action looks like to patients. Further research is underway to produce a valid and reliable version of this proposed new measure. We have outlined these initial stages in detail in the hope of encouraging greater transparency and replicability in measure development, as well as emphasising the value of involving PLE throughout the process. PATIENT OR PUBLIC CONTRIBUTION: This study involved PLE of both physical and mental healthcare (as staff, patients and service users) throughout the development of the new measure, including initial project conceptualisation and participation in item generation and refinement stages.

What bothers severe asthma patients most? A paired patient-clinician study across seven European countries.

Introduction: Severe asthma is a complex, multidimensional disease. Optimal treatment, adherence and outcomes require shared decision-making, rooted in mutual understanding between patient and clinician. This study used a novel, patient-centred approach to examine the most bothersome aspects of severe asthma to patients, as seen from both perspectives in asthma registries. Methods: Across seven countries, 126 patients with severe asthma completed an open-ended survey regarding most the bothersome aspect(s) of their asthma. Patients' responses were linked with their treating clinician who also completed a free-text survey about each patient's most bothersome aspect(s). Responses were coded using content analysis, and patient and clinician responses were compared. Finally, asthma registries that are part of the SHARP (Severe Heterogeneous Asthma Research collaboration, Patient-centred) Clinical Research Collaboration were examined to see the extent to which they reflected the most bothersome aspects reported by patients. Results: 88 codes and 10 themes were identified. Clinicians were more focused on direct physical symptoms and were less focused on "holistic" aspects such as the effort required to self-manage the disease. Clinicians accurately identified a most bothersome symptom for 29% of patients. Agreement was particularly low with younger patients and those using oral corticosteroids infrequently. In asthma registries, patient aspects were predominantly represented in questionnaires. Conclusions: Results demonstrated different perspectives and priorities between patients and clinicians, with clinicians more focused on physical aspects. These differences must be considered when treating individual patients, and within multidisciplinary treatment teams. The use of questionnaires that include multifaceted aspects of disease may result in improved asthma research.

Commentary: Bringing together lived experience, clinical and research expertise - a commentary on the May 2022 debate (should CAMH professionals be diagnosing personality disorder in adolescence?).

BACKGROUND: There is a wealth of evidence to suggest that the Borderline Personality Disorder (BPD, or similar Emotionally Unstable Personality Disorder, EUPD) construct is harmful. We provide a commentary on the ideas expressed in the May Debate issue, highlighting both concerns and alternatives. METHOD: We bring together lived experience, clinical and research expertise. This commentary was written collaboratively drawing on all these sources of evidence. RESULTS: We outline evidence that the BPD construct is invalid, harmful, not necessary for effective treatment and a potential block to the development and evaluation of alternatives. CONCLUSIONS: We ask readers to consider these concerns, perspectives and ideas.

Loneliness and mental health in children and adolescents with pre-existing mental health problems: A rapid systematic review.

OBJECTIVES: Periods of social isolation are associated with loneliness in children and young people, and loneliness is associated with poor mental and physical health. Children and young people with pre-existing mental health difficulties may be prone to loneliness. Containment of COVID-19 has necessitated widespread social isolation, with unprecedented school closures and restrictions imposed on social interactions. This rapid review aimed to establish what is known about the relationship between loneliness and mental health problems in children and young people with pre-existing mental health problems. METHODS: We sought to identify all primary research that examined the cross-sectional and longitudinal associations between loneliness/perceived social isolation and mental health in children and young people with pre-existing mental health problems. We also aimed to identify effective interventions that reduce the adverse impact of loneliness. A rapid systematic search was conducted using MEDLINE, PsycINFO, and Web of Science. RESULTS: Of 4,531 papers screened, 15 included children and young people with pre-existing mental health conditions. These 15 studies included 1,536 children and young people aged between 6 and 23 years with social phobia, anxiety and/or depression, and neurodevelopmental disorders. Loneliness was associated with anxiety and depression both cross-sectionally and prospectively in children and young people with mental health problems and neurodevelopmental conditions. We found preliminary evidence that psychological treatments can help to reduce feelings of loneliness in this population. CONCLUSIONS: Loneliness is associated with depression and anxiety in children and young people with pre-existing mental health conditions, and this relationship may be bidirectional. Existing interventions to address loneliness and/or mental health difficulties in other contexts may be applied to this population, although they may need adaptation and testing in younger children and adolescents. PRACTITIONER POINTS: Loneliness is common in children and young people, and during periods of enforced social isolation such as during COVID-19, children and young people report high levels of loneliness (or increased rates of loneliness). The review showed that loneliness is associated, both cross-sectionally and prospectively, in children and young people with mental health problems and also in children and young people with neurodevelopmental conditions, such as autism spectrum disorder. Thus, loneliness is a possible risk factor of which mental health providers should be aware. Maintaining social contact both by direct and by indirect means, especially through the Internet, could be important in mitigating loneliness. Interventions to address loneliness should be further developed and tested to help children and young people with pre-existing mental health problems who are lonely by preventing exacerbation of their mental health difficulties, in particular anxiety and depression.

Rapid Systematic Review: The Impact of Social Isolation and Loneliness on the Mental Health of Children and Adolescents in the Context of COVID-19.

OBJECTIVE: Disease containment of COVID-19 has necessitated widespread social isolation. We aimed to establish what is known about how loneliness and disease containment measures impact on the mental health in children and adolescents. METHOD: For this rapid review, we searched MEDLINE, PsycInfo, and Web of Science for articles published between January 1, 1946, and March 29, 2020. Of the articles, 20% were double screened using predefined criteria, and 20% of data was double extracted for quality assurance. RESULTS: A total of 83 articles (80 studies) met inclusion criteria. Of these, 63 studies reported on the impact of social isolation and loneliness on the mental health of previously healthy children and adolescents (n = 51,576; mean age 15.3 years). In all, 61 studies were observational, 18 were longitudinal, and 43 were cross-sectional studies assessing self-reported loneliness in healthy children and adolescents. One of these studies was a retrospective investigation after a pandemic. Two studies evaluated interventions. Studies had a high risk of bias, although longitudinal studies were of better methodological quality. Social isolation and loneliness increased the risk of depression, and possibly anxiety at the time at which loneliness was measured and between 0.25 and 9 years later. Duration of loneliness was more strongly correlated with mental health symptoms than intensity of loneliness. CONCLUSION: Children and adolescents are probably more likely to experience high rates of depression and most likely anxiety during and after enforced isolation ends. This may increase as enforced isolation continues. Clinical services should offer preventive support and early intervention where possible and be prepared for an increase in mental health problems.

Developing a measure to assess the quality of care transitions for older people.

BACKGROUND: The transition of older patients (over 65 years of age) from hospital to their own home is a time when patients are at high risk. No measure currently exists to assess the experience, quality and safety of care transitions relevant to UK population. We aim to describe the development and initial testing of the Partners at Care Transitions Measure (PACT-M) as a patient-reported questionnaire for evaluation of the quality and safety of care transitions from hospital to home in older patients. METHODS: We used an established measure development procedure which includes conceptualising the components of care transitions, item development, conducting a modified Delphi process and pilot-testing of the PACT-M with patients over 65 years old using telephone administration. RESULTS: Pilot testing of the PACT-M suggests that the components identified cover the issues of most importance to patients. Face validity testing showed that the measure in its current form is acceptable to older patients. CONCLUSIONS: The measure developed in this study shows promise for use by those involved in planning, implementing and evaluating discharge care, and could be used to inform interventions to improve the transition from hospital to home for older patients.

Measurement and monitoring of safety: impact and challenges of putting a conceptual framework into practice.

BACKGROUND: The Measurement and Monitoring of Safety Framework provides a conceptual model to guide organisations in assessing safety. The Health Foundation funded a large-scale programme to assess the value and impact of applying the Framework in regional and frontline care settings. We explored the experiences and reflections of key participants in the programme. METHODS: The study was conducted in the nine healthcare organisations in England and Scotland testing the Framework (three regional improvement bodies, six frontline settings). Post hoc interviews with clinical and managerial staff were analysed using template analysis. FINDINGS: Participants reported that the Framework promoted a substantial shift in their thinking about how safety is actively managed in their environment. It provided a common language, facilitated a more inquisitive approach and encouraged a more holistic view of the components of safety. These changes in conceptual understanding, however, did not always translate into broader changes in practice, with many sites only addressing some aspects of the Framework. One of the three regions did embrace the Framework in its entirety and achieved wider impact with a range of interventions. This region had committed leaders who took time to fully understand the concepts, who maintained a flexible approach to exploring the utility of the Framework and who worked with frontline staff to translate the concepts for local settings. CONCLUSIONS: The Measuring and Monitoring of Safety Framework has the potential to support a broader and richer approach to organisational safety. Such a conceptually based initiative requires both committed leaders who themselves understand the concepts and more time to establish understanding and aims than might be needed in a standard improvement programme.