Clinician views on how clinical decision support systems can help diagnose asthma in primary care: a qualitative study.

OBJECTIVE: Asthma can be difficult to diagnose in primary care. Clinical decision support systems (CDSS) can assist clinicians when making diagnostic decisions, but the perspectives of intended users need to be incorporated into the software if the CDSS is to be clinically useful. Therefore, we aimed to understand health professional views on the value of an asthma diagnosis CDSS and the barriers and facilitators for use in UK primary care. METHODS: We recruited doctors and nurses working in UK primary care who had experience of assessing respiratory symptoms and diagnosing asthma. Qualitative interviews were used to explore clinicians' experiences of making a diagnosis of asthma and understand views on a CDSS to support asthma diagnosis. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. RESULTS: 16 clinicians (nine doctors, seven nurses) including 13 participants with over 10 years experience, contributed interviews. Participants saw the potential for a CDSS to support asthma diagnosis in primary care by structuring consultations, identifying relevant information from health records, and having visuals to communicate findings to patients. Being evidence based, regularly updated, integrated with software, quick and easy to use were considered important for a CDSS to be successfully implemented. Experienced clinicians were unsure a CDSS would help their routine practice, particularly in straightforward diagnostic scenarios, but thought a CDSS would be useful for trainees or less experienced colleagues. CONCLUSIONS: To be adopted into clinical practice, clinicians were clear that a CDSS must be validated, integrated with existing software, and quick and easy to use.

Patient views on asthma diagnosis and how a clinical decision support system could help: A qualitative study.

INTRODUCTION: Making a diagnosis of asthma can be challenging for clinicians and patients. A clinical decision support system (CDSS) for use in primary care including a patient-facing mode, could change how information is shared between patients and healthcare professionals and improve the diagnostic process. METHODS: Participants diagnosed with asthma within the last 5 years were recruited from general practices across four UK regions. In-depth interviews were used to explore patient experiences relating to their asthma diagnosis and to understand how a CDSS could be used to improve the diagnostic process for patients. Interviews were audio recorded, transcribed verbatim and analysed using a thematic approach. RESULTS: Seventeen participants (12 female) undertook interviews, including 14 individuals and 3 parents of children with asthma. Being diagnosed with asthma was generally considered an uncertain process. Participants felt a lack of consultation time and poor communication affected their understanding of asthma and what to expect. Had the nature of asthma and the steps required to make a diagnosis been explained more clearly, patients felt their understanding and engagement in asthma self-management could have been improved. Participants considered that a CDSS could provide resources to support the diagnostic process, prompt dialogue, aid understanding and support shared decision-making. CONCLUSION: Undergoing an asthma diagnosis was uncertain for patients if their ideas and concerns were not addressed by clinicians and were influenced by a lack of consultation time and limitations in communication. An asthma diagnosis CDSS could provide structure and an interface to prompt dialogue, provide visuals about asthma to aid understanding and encourage patient involvement. PATIENT AND PUBLIC CONTRIBUTION: Prespecified semistructured interview topic guides (young person and adult versions) were developed by the research team and piloted with members of the Asthma UK Centre for Applied Research Patient and Public Involvement (PPI) group. Findings were regularly discussed within the research group and with PPI colleagues to aid the interpretation of data.

Public perceptions of advance care planning (ACP) from an international perspective: a scoping review.

BACKGROUND: Advance Care Planning (ACP) helps people discuss personal values, goals and priorities regarding future care with family and professionals. It can support care coordination and guide decision-making as health deteriorates. However, uptake remains low internationally. Poor communication and information due to Covid-19 pressures exacerbated public and professional criticism and concerns. Recent recommendations highlight the importance of understanding and addressing public perceptions about ACP combined with person-centred approaches to ACP conversations. OBJECTIVES: To explore public perceptions of ACP to inform increased public engagement and empowerment. METHODS: Joanna Briggs Institute methodology was applied in a rapid scoping review. Three databases (Embase, MEDLINE, APA PsycInfo) were searched for English language reviews and primary or secondary research studies from 2015 to 2021. Following title and abstract review, two researchers screened full-text articles and performed data extraction independently using Covidence. Charted data were analysed for themes and subthemes starting with two recent published reviews. Emerging findings were added and data synthesis reviewed by the research team, including public-patient representatives, to achieve consensus. RESULTS: Of 336 studies, 20 included reviews and research papers represented diverse public views, situations and contexts. Studies found poor public knowledge of ACP and widespread perceptions of confusing or accessible information. Multiple reports described little personal relevance, perceived risks of emotional distress, fears, mistrust and misconceptions about the purpose and scope of ACP. Studies identified public concerns stemming from reluctance to discuss death and dying despite this being just one aspect of ACP. Research with minority communities and marginalised groups found intensified concerns. Some studies cited people who valued maintaining autonomy by expressing their goals and preferences. CONCLUSIONS: Studies reviewed found many members of the public had negative or unclear perceptions of ACP. Improved knowledge and understanding appeared to influence perceptions of ACP but were not considered sufficient to change behaviours. The research provided valuable insights from members of the public that could inform current professional and societal debates about the future of ACP. Findings point to a need for novel approaches to ACP public information and involvement whilst bearing in mind societal norms, diverse cultures and contexts.

An evaluation of the psychometric properties of the Indicator of Relative Need (IoRN) instrument.

BACKGROUND: The Indicator of Relative Need (IoRN) instrument is designed for both health and social care services to measure function and dependency in older people. To date, the tool has not undergone assessment of validity. We report two studies aimed to evaluate psychometric properties of the IoRN. METHODS: The first study recruited patients receiving social care at discharge from hospital, those rehabilitating in intermediate care, and those in a rehabilitation at home service. Participants were assessed using the IoRN by a single researcher and by the clinical team at baseline and 8 weeks. Comparator instruments (Barthel ADL, Nottingham Extended ADL and Townsend Disability Scale) were also administered. Overall change in ability was assessed with a 7 point Likert scale at 8 weeks. The second study analysed linked routinely collected, health and social care data (including IoRN scores) to assess the relationship between IoRN category and death, hospitalisation and care home admission as a test of external validity. RESULTS: Ninety participants were included in the first study, mean age 77.9 (SD 12.0). Cronbach's alpha for IoRN subscales was high (0.87 to 0.93); subscales showed moderate correlation with comparator tools (r = 0.43 to 0.63). Cohen's weighted kappa showed moderate agreement between researcher and clinician IoRN category (0.49 to 0.53). Two-way intraclass correlation coefficients for IoRN subscales in participants reporting no change in ability were high (0.88 to 0.98) suggesting good stability; responsiveness coefficients in participants reporting overall change were equal to or better than comparator tools. 1712 patients were included in the second study, mean age 81.0 years (SD 7.7). Adjusted hazard ratios for death, care home admission and hospitalisation in the most dependent category compared to the least dependent IoRN category were 5.9 (95 % CI 2.0-17.0); 7.2 (95 % CI 4.4-12.0); 1.1 (95 % CI 0.5-2.6) respectively. The mean number of allocated hours of care 6 months after assessment was higher in the most dependent group compared to the least dependent group (5.6 vs 1.4 h, p = 0.005). CONCLUSIONS: Findings from these analyses support the use of the IoRN across a range of clinical environments although some limitations are highlighted.

Cancer symptom awareness and barriers to medical help seeking in Scottish adolescents: a cross-sectional study.

BACKGROUND: Initiatives to promote early diagnosis include raising public awareness of signs and symptoms of cancer and addressing barriers to seeking medical help about cancer. Awareness of signs and symptoms of cancer and emotional barriers, such as fear, worry, and embarrassment, strongly influence help seeking behaviour. Whether anxiety influences seeking medical help about cancer is not known. The purpose of this study about adolescents was to examine: 1) the relationship between contextual factors and awareness of signs and symptoms of cancer and barriers (including emotional barriers) to seeking medical help, and 2) associations between anxiety and endorsed barriers to seeking medical help. Interpretation of data is informed by the common sense model of the self-regulation of health and illness. METHODS: A cross-sectional study of 2,173 Scottish adolescents (age 12/13 years) using the Cancer Awareness Measure. Socio-demographic questions were also included. Descriptive statistics were calculated and two Poisson regression models were built to determine independent predictors of: 1) the number of cancer warning signs recognized, and; 2) number of barriers to help seeking endorsed. RESULTS: Analysis identified that knowing someone with cancer was a significant independent predictor of recognising more cancer warning signs whereas Black and Minority Ethnic status was a significant independent predictor of recognising fewer cancer warning signs. Emotional barriers were the most commonly endorsed, followed by family, service and practical barriers. Over two thirds of adolescents were 'worried about what the doctor would find' and over half were 'scared'. Higher anxiety scores, knowing more cancer warning signs and female gender were significant independent predictors of barriers to help seeking. CONCLUSION: Improving cancer awareness and help seeking behaviour during adolescence may contribute to early presentation. Contextual factors (for example, ethnicity, gender, knowing someone with cancer), and emotional dimensions (for example, anxiety, fear, worry) are critical components in help seeking behaviours. The role of emotional factors indicates that public health campaigns focused on awareness and help seeking may benefit from having a more emotional focus, for example, including references to feelings, such as, fears and worries.

Online public information about advance care planning: An evaluation of UK and international websites.

Introduction: Healthcare information is increasingly internet-based. Standards require websites to be 'perceivable, operable, understandable and robust' with relevant content for citizens in appropriate language. This study examined UK and international websites offering public healthcare information on advance care planning (ACP) using current recommendations for website accessibility and content and informed by a public engagement exercise. Methods: Google searches identified websites in English from health service providers, governmental or third sector organisations based in the UK and internationally. Target keywords that would be used by a member of the public informed the search terms. Data extraction used criterion-based assessment and web content analysis of the first two pages of each search result. Public patient representatives as key members of the multidisciplinary research team guided the development of the evaluation criteria. Results: A total of 1158 online searches identified 89 websites, reduced to 29 by inclusion/exclusion criteria. Most sites met international recommendations for knowledge/understanding about ACP. Differences in terminology, lack of information about ACP limitations and non-adherence to recommended reading levels, accessibility standards and translation options were apparent. Sites targeting members of the public used more positive, non-technical language than those for both professional and lay users. Conclusions: Some websites met accepted standards required to facilitate understanding and public engagement in ACP. Others could be improved significantly. Website providers have important roles and responsibilities in increasing people's understanding of their health conditions, future care options and ability to take an active role in planning for their health and care.

Advance care planning in primary care for patients with gastrointestinal cancer: feasibility randomised trial.

BACKGROUND: Advance (anticipatory) care planning (ACP) requires discussions between patients and healthcare professionals about planning for future deterioration in health. ACP improves care coordination but uptake is limited and often deferred. AIM: To assess the feasibility and acceptability to patients, carers, and GPs of a primary care ACP intervention for people with incurable oesophageal, gastric, or pancreatic cancer. DESIGN AND SETTING: A 12-month feasibility randomised controlled trial (RCT) in a Scottish Cancer Network. METHOD: Patients aged ≥18 years starting palliative oncology treatment were randomised 1:1 to an ACP intervention or standard care. Patients in the intervention group received an oncologist letter supporting them to request a GP review along with a patient information leaflet about ACP. Pre-specified analyses with masking included trial recruitment and retention, ACP completion, and quality-of-life questionnaires (EuroQol EQ-5D-5L and ICECAP Supportive Care Measure) at baseline, 6, 12, 24, and 48 weeks. Qualitative interviews with purposive sampling explored patient, carer, and GP experiences. RESULTS: Of 99 eligible participants (269 screened), 46% were recruited (n = 46) and randomised; 25 to intervention and 21 to control. By 12 weeks, 45% (n = 9/20) of the individuals in the intervention and 59% (n = 10/17) in the control group had a documented ACP plan. By 24 weeks, 30% (n = 14) had died; in the remaining participants quality of life was maintained at 24 weeks except for physical symptoms. Social norms associating ACP with dying were prevalent among 23 participants interviewed. No psychological or clinical harms were identified. CONCLUSION: An RCT of ACP for people with incurable cancer in primary care is feasible. Patient, carer, and GP attitudes and behaviours determined acceptability and timing of care planning.