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Identifying carers in general practice (STATUS QUO): a multicentre, cross-sectional study in England

Por: Lawton · S. · Mallen · C. · Hussain · Z. · Bajpai · R. · Muller · S. · Holmstrom · C. · Jinks · C. · Helliwell · T.
Objectives

To determine General Practice (GP) recording of carer status and the number of patients self-identifying as carers, while self-completing an automated check-in screen prior to a GP consultation.

Design

A descriptive cross-sectional study.

Setting

11 GPs in the West Midlands, England. Recruitment commenced in September 2019 and concluded in January 2020.

Participants

All patients aged 10 years and over, self-completing an automated check-in screen, were invited to participate during a 3-week recruitment period.

Primary and secondary outcome measures

The current coding of carers at participating GPs and the number of patients identifying themselves as a carer were primary outcome measures. Secondary outcome measures included the number of responses attained from automated check-in screens as a research data collection tool and whether carers felt supported in their carer role.

Results

80.3% (n=9301) of patients self-completing an automated check-in screen participated in QUantifying the identification Of carers in general practice (STATUS QUO Study) (62.6% (n=5822) female, mean age 52.9 years (10–98 years, SD=20.3)). Prior to recruitment, the clinical code used to denote a carer was identified in 2.7% (n=2739) of medical records across the participating GPs.

10.1% (n=936) of participants identified themselves as a carer. They reported feeling supported with their own health and social care needs: always 19.3% (n=150), a lot of the time 13.2% (n=102), some of the time 40.8% (n=317) and never 26.7% (n=207).

Conclusions

Many more participants self-identified as a carer than were recorded on participating GP lists. Improvements in the recording of the population’s caring status need to be actioned, to ensure that supportive implementation strategies for carers are effectively received. Using automated check-in facilities for research continues to provide high participation rates.

Inter-facility transfers for emergency obstetrical and neonatal care in rural Madagascar: a cost-effectiveness analysis

Por: Franke · M. A. · Nordmann · K. · Frühauf · A. · Ranaivoson · R. M. · Rebaliha · M. · Rapanjato · Z. · Bärnighausen · T. · Muller · N. · Knauss · S. · Emmrich · J. V.
Context

There is a substantial lack of inter-facility referral systems for emergency obstetrical and neonatal care in rural areas of sub-Saharan Africa. Data on the costs and cost-effectiveness of such systems that reduce preventable maternal and neonatal deaths are scarce.

Setting

We aimed to determine the cost-effectiveness of a non-governmental organisation (NGO)-run inter-facility referral system for emergency obstetrical and neonatal care in rural Southern Madagascar by analysing the characteristics of cases referred through the intervention as well as its costs.

Design

We used secondary NGO data, drawn from an NGO’s monitoring and financial administration database, including medical and financial records.

Outcome measures

We performed a descriptive and a cost-effectiveness analysis, including a one-way deterministic sensitivity analysis.

Results

1172 cases were referred over a period of 4 years. The most common referral reasons were obstructed labour, ineffective labour and eclampsia. In total, 48 neonates were referred through the referral system over the study period. Estimated cost per referral was US$336 and the incremental cost-effectiveness ratio (ICER) was US$70 per additional life-year saved (undiscounted, discounted US$137). The sensitivity analysis showed that the intervention was cost-effective for all scenarios with the lowest ICER at US$99 and the highest ICER at US$205 per additional life-year saved. When extrapolated to the population living in the study area, the investment costs of the programme were US$0.13 per person and annual running costs US$0.06 per person.

Conclusions

In our study, the inter-facility referral system was a very cost-effective intervention. Our findings may inform policies, decision-making and implementation strategies for emergency obstetrical and neonatal care referral systems in similar resource-constrained settings.

‘Either something's wrong, or I'm a terrible parent’: A systematic review of parent experiences of illness‐related interpretations for unsettled babies

Abstract

Aims

To explore parents' experiences of unsettled babies and medical labels.

Design

Qualitative systematic review, thematic synthesis and development of a conceptual model.

Review Methods

Systematic review and thematic synthesis of primary, qualitative research into parents' experiences of unsettled babies <12 months of age. ‘Unsettled’ was defined as perception of excessive crying with additional feature(s) such as vomiting, skin or stool problems. The Critical Appraisal Skills Programme (CASP) checklist was used to assess trustworthiness.

Data Sources

Structured searches completed in CINAHL, Medline, Embase, PsychINFO and CochraneCT on 23 March 2022 and rerun on 14 April 2023.

Results

Ten eligible studies were included across eight countries contributing data from 103 mothers and 24 fathers. Two analytical themes and eight descriptive themes were developed.

Firstly, parents expressed fearing judgement, feeling guilty and out of control as a result of babies' unsettled symptoms and seeking strategies to construct an ‘Identity as a “Good Parent”’.

This desire for positive parenting identity underpinned the second analytical theme ‘Searching for an explanation’ which included seeking external (medical) causes for babies' unsettled behaviours.

Conclusion

Parents can become trapped in a cycle of ‘searching for an explanation’ for their baby's unsettled behaviours, experiencing considerable distress which is exacerbated by feelings of guilt and failure.

Impact and Implications for Patient Care

Insight gained from this review could inform interventions to support parents, reducing inaccurate medicalization.

Health visiting teams supporting parents with unsettled baby behaviour could focus on supporting a positive parenting identity by managing expectations, normalizing the continuum of infant behaviours, reducing feelings of guilt or uncertainty and helping parents regain a feeling of control.

Reporting Method

ENTREQ guidelines were adhered to in the reporting of this review.

Patient or Public Contribution

Parent input was crucial in the design phase; shaping the language used (e.g., ‘unsettled babies’) and in the analysis sense-checking findings.

Living with unsettled baby behaviours: Qualitative interview study exploring parental perceptions and experiences of help‐seeking

Abstract

Aim

To explore parents' perceptions/experiences of help-seeking for unsettled baby behaviours, including views and experiences of obtaining advice from primary healthcare professionals.

Design

Semi-structured qualitative interviews.

Methods

Recruitment occurred via social media, general practice and health visiting teams. Remote semi-structured interviews were conducted with parents of babies. Babies were under 12 months old at time of interview, and parents had perceived unsettled baby behaviours in their first 4 months of life. Interviews were transcribed and data analysed using reflexive thematic analysis.

Results

Based on interviews with 25 mothers, four main themes were developed. ‘The need for answers’ highlighted parental uncertainty about what constitutes normal baby behaviour, leading to help-seeking from multiple sources. ‘The importance of health professionals’ and ‘Experiencing health professional support’ identified perceptions about limited access, communication, mixed advice and how these influenced parental perception/management of behaviours. ‘Foundations to help-seeking’ highlighted important roles of social support and online help for valued shared experiences, emotional and practical support.

Conclusion

Health professional access and advice are important to parents, despite the increasing role of online help and importance of social support. More support and improved access to reliable sources of information is needed for parents.

Implications for the Profession and/or Patient Care

Findings will inform future research and clinical practice to address parental uncertainties. Qualitative research with front-line health professionals is necessary.

Impact

Findings can inform the development of resources to support professionals/families managing unsettled babies.

Reporting Method

Standards for Reporting Qualitative Research.

Public Involvement

A public contributor was involved throughout all stages of the research. Emerging findings were discussed at a parent group.

What does this paper contribute to the wider global clinical community?

Addressing parental uncertainties is important; about what is normal, non-pharmacological approaches and when pharmacological intervention is required. A digital information/self-management intervention may be useful for parents/clinicians.

Development of clinical items to identify dysphagia in patients with dementia—An e‐Delphi study

Abstract

Aim

To identify clinical observable items that can be used to identify dysphagia while observing a typical eating situation.

Design

A three-round e-Delphi survey.

Methods

An expert panel consisting of five nurses, eight speech language therapists and five physicians participated in this three-round e-Delphi survey from November 2022 to January 2023. Round 1 presented the results of a literature research conducted in September 2022 and an open question to the participants. The answers were analysed using the content analysis method. In the following rounds, the results were presented back to the participants with a request to rate them for usefulness. Means, standard deviations, ANOVA and Fisher's exact test were used to demonstrate the panel's opinion, level of agreement, demographic characteristics of the participants as well as differences between the professional groups in regard of the rating of the items. Methods and results are reported in accordance with the ‘Guidance on Conducting and Reporting Delphi Studies’ (CREDES).

Results

The content analysis initially generated 36 items suggested by the expert panel. Seven additional items were incorporated from the literature review. In rounds 2 and 3, a 4-point Likert scale was used to rate each item and to calculate the level of agreement. The predetermined level of agreement exceeded 70% for 23 items.

Conclusion

Based on the expert opinions, it is possible for nurses to identify dysphagia in patients with dementia by using the determined 23 items while observing a typical eating situation.

Patient or Public Contributions

The expert panel contributed to the creation of this study by participating in the Delphi rounds.

Implications for the profession and/or patient care

The 23 items determined in this e-Delphi study enable nurses to make dietary adjustments or consult other members of the multidisciplinary team based on available evidence, enabling complications to be avoided.

Impact

What problem did the study address? This study provides evidence regarding the identification of dysphagia in patients with dementia by nurses.

What were the main findings? Twenty-three items were determined by an expert panel that can be used by nurses to identify dysphagia in patients with dementia while observing a typical eating situation.

Where and on whom will the research have an impact? This research will have an impact on patients with dementia and the nurses caring for them.

Reporting method

Methods and results are reported in accordance with the ‘Guidance on Conducting and Reporting Delphi Studies’ (CREDES) (Jünger et al., 2017), which promotes consistency and quality in conducting Delphi studies.

Evaluating deep learning-based melanoma classification using immunohistochemistry and routine histology: A three center study

by Christoph Wies, Lucas Schneider, Sarah Haggenmüller, Tabea-Clara Bucher, Sarah Hobelsberger, Markus V. Heppt, Gerardo Ferrara, Eva I. Krieghoff-Henning, Titus J. Brinker

Pathologists routinely use immunohistochemical (IHC)-stained tissue slides against MelanA in addition to hematoxylin and eosin (H&E)-stained slides to improve their accuracy in diagnosing melanomas. The use of diagnostic Deep Learning (DL)-based support systems for automated examination of tissue morphology and cellular composition has been well studied in standard H&E-stained tissue slides. In contrast, there are few studies that analyze IHC slides using DL. Therefore, we investigated the separate and joint performance of ResNets trained on MelanA and corresponding H&E-stained slides. The MelanA classifier achieved an area under receiver operating characteristics curve (AUROC) of 0.82 and 0.74 on out of distribution (OOD)-datasets, similar to the H&E-based benchmark classification of 0.81 and 0.75, respectively. A combined classifier using MelanA and H&E achieved AUROCs of 0.85 and 0.81 on the OOD datasets. DL MelanA-based assistance systems show the same performance as the benchmark H&E classification and may be improved by multi stain classification to assist pathologists in their clinical routine.

Risk assessment and real-world outcomes in chronic thromboembolic pulmonary hypertension: insights from a UK pulmonary hypertension referral service

Por: Kiely · D. G. · Hamilton · N. · Wood · S. · Durrington · C. · Exposto · F. · Muzwidzwa · R. · Raiteri · L. · Beaudet · A. · Muller · A. · Sauter · R. · Pillai · N. · Lawrie · A. · ASPIRE consortium · Condliffe · Elliot · Hameed · Charalampopoulos · Rothman · Roger Thompson · Hurdman
Objectives

This study was conducted to evaluate the ability of risk assessment to predict healthcare resource utilisation (HCRU), costs, treatments, health-related quality of life (HRQoL) and survival in patients diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH).

Design

Retrospective observational study.

Setting

Pulmonary hypertension referral centre in the UK.

Participants

Adults diagnosed with CTEPH between 1 January 2012 and 30 June 2019 were included. Cohorts were retrospectively defined for operated patients (received pulmonary endarterectomy (PEA)) and not operated; further subgroups were defined based on risk score (low, intermediate or high risk for 1-year mortality) at diagnosis.

Primary and secondary outcome measures

Demographics, clinical characteristics, comorbidities, treatment patterns, HRQoL, HCRU, costs and survival outcomes were analysed.

Results

Overall, 683 patients were analysed (268 (39%) operated; 415 (61%) not operated). Most patients in the operated and not-operated cohorts were intermediate risk (63%; 53%) or high risk (23%; 31%) at diagnosis. Intermediate-risk and high-risk patients had higher HCRU and costs than low-risk patients. Outpatient and accident and emergency visits were lower postdiagnosis for both cohorts and all risk groups versus prediagnosis. HRQoL scores noticeably improved in the operated cohort post-PEA, and less so in the not-operated cohort at 6–18 months postdiagnosis. Survival at 5 years was 83% (operated) and 49% (not operated) and was lower for intermediate-risk and high-risk patients compared with low-risk patients.

Conclusions

Findings from this study support that risk assessment at diagnosis is prognostic for mortality in patients with CTEPH. Low-risk patients have better survival and HRQoL and lower HCRU and costs compared with intermediate-risk and high-risk patients.

Cost-effectiveness of Spironolactone for Adult Female Acne (SAFA): economic evaluation alongside a randomised controlled trial

Por: Pyne · S. · Sach · T. H. · Lawrence · M. · Renz · S. · Eminton · Z. · Stuart · B. · Thomas · K. S. · Francis · N. · Soulsby · I. · Thomas · K. · Permyakova · N. V. · Ridd · M. J. · Little · P. · Muller · I. · Nuttall · J. · Griffiths · G. · Layton · A. M. · Santer · M.
Objective

This study aims to estimate the cost-effectiveness of oral spironolactone plus routine topical treatment compared with routine topical treatment alone for persistent acne in adult women from a British NHS perspective over 24 weeks.

Design

Economic evaluation undertaken alongside a pragmatic, parallel, double-blind, randomised trial.

Setting

Primary and secondary healthcare, community and social media advertising.

Participants

Women ≥18 years with persistent facial acne judged to warrant oral antibiotic treatment.

Interventions

Participants were randomised 1:1 to 50 mg/day spironolactone (increasing to 100 mg/day after 6 weeks) or matched placebo until week 24. Participants in both groups could continue topical treatment.

Main outcome measures

Cost-utility analysis assessed incremental cost per quality-adjusted life year (QALY) using the EQ-5D-5L. Cost-effectiveness analysis estimated incremental cost per unit change on the Acne-QoL symptom subscale. Adjusted analysis included randomisation stratification variables (centre, baseline severity (investigator’s global assessment, IGA

Results

Spironolactone did not appear cost-effective in the complete case analysis (n=126 spironolactone, n=109 control), compared with no active systemic treatment (adjusted incremental cost per QALY £67 191; unadjusted £34 770). Incremental cost per QALY was £27 879 (adjusted), just below the upper National Institute for Health and Care Excellence’s threshold value of £30 000, where multiple imputation took account of missing data. Incremental cost per QALY for other sensitivity analyses varied around the base-case, highlighting the degree of uncertainty. The adjusted incremental cost per point change on the Acne-QoL symptom subscale for spironolactone compared with no active systemic treatment was £38.21 (complete case analysis).

Conclusions

The results demonstrate a high level of uncertainty, particularly with respect to estimates of incremental QALYs. Compared with no active systemic treatment, spironolactone was estimated to be marginally cost-effective where multiple imputation was performed but was not cost-effective in complete case analysis.

Trial registration number

ISRCTN registry (ISRCTN12892056).

Balancing on life's ladder: A meta‐ethnography of the existential experiences of siblings of children with complex care needs

Abstract

Aim

To synthesize and interpret existing qualitative research on the existential experiences of siblings of children with complex care needs.

Design

Noblit and Hare's interpretive meta-ethnography.

Methods

The study has been registered in the international prospective register for systematic reviews (PROSPERO). Noblit and Hare's 7-step procedure was followed and reciprocal translation was performed to analyse the data and develop a line of argument synthesis.

Data Sources

A comprehensive systematic literature search of five databases, along with extensive manual searches, was completed in November 2022. The final sample comprised 18 studies published between 2010 and 2022.

Results

A line of argument, expressed through an overarching metaphor, “balancing on life's ladder”, illustrates the core findings of siblings' fluctuating experiences of existential well-being, and encapsulates four third-order themes: the emotional turmoil of siblings, interrupted family life, siblings strive to be themselves and siblings struggle to cope.

Conclusion

Growing up with a sibling with complex care needs made children feel invisible, lonely and struggling to find the courage to cope. By adopting a lifeworld approach, nurses can become aware of healthy siblings' unmet needs. Future research is needed on how nurses can contribute to siblings' existential well-being, in primary – and secondary health care settings.

Implications

The study provides insight into siblings' existential experiences and factors improving their well-being, enabling nurses to provide a more optimized lifeworld-led clinical practice.

Impact

Healthcare, nursing education and practice should be informed by the knowledge of existential issues. Nurses are well-positioned to work alongside families to provide family-centered care. Our findings have implications for health policies tailored to the needs of children with chronically ill siblings.

Reporting Method

This review adheres to the Equator and improving reporting of meta-ethnography (eMERGe) guidelines.

Patient or Public Contribution

No patient or public contribution, because the data comprised previously published studies.

Patients' experiences with early rehabilitation in intensive care units: A qualitative study about aspects that influence their participation

Abstract

Aim

To explore patients' experiences with early rehabilitation in the intensive care unit and what they perceive to influence their participation.

Design

A qualitative design anchored in phenomenological and hermeneutical traditions utilizing in-depth interviews.

Methods

Thirteen patients were interviewed from 5 to 29 weeks following discharge from three units, in January–December 2022. Analysed using systematic text condensation and the pattern theory of self. Reporting adhered to consolidated criteria for reporting qualitative research.

Results

Interviews described four main categories: (1) A foreign body, how the participants experienced their dysfunctional and different looking bodies. (2) From crisis to reorientation, the transformation the participants experienced from a state of crisis to acceptance and the ability to look forwards, indicating how bodily dysfunctions are interlinked to breakdowns of the patients' selves and the reorganization process. (3) Diverse expectations regarding activity: ambiguous expectations communicated by the nurses. (4) Nurse–patient: a powerful interaction, highlighting the essential significance of positive expectations and tailored bodily and verbal interaction for rebuilding the patient's outwards orientation.

Conclusion

Outwards orientation and reorganization of the self through a reduction in bodily dysfunctions, strengthening the patients' acceptance of the situation, providing tailored expectations and hands-on and verbal interaction appear to be fundamental aspects of patient participation in early rehabilitation.

Implications

Insights into patients' perceptions show how dysfunctional bodies cloud individuals' perceptual fields, causing inwards orientation and negative thoughts concerning themselves, their capabilities, environment and future. This knowledge can improve nurses' ability to tailor care to promote optimal recovery for patients.

Patient or Public Contribution

User representative contributed to the design of the study.

Severe necrotizing soft tissue infections—Is wound microbiology a prognostic factor for clinical outcome?

Abstract

Necrotizing soft tissue infections (NSTIs) represent similar pathophysiological features, but the clinical course might range from subacute to a rapidly progressive, fulminant sepsis. Initial wound microbiology is the base for the Guiliano classification. The timeline of microbiological colonization has not been described during the clinical course. The role of the different microbiological pathogens on the outcome and mortality is unclear. One hundred eighty patients were included with septic inflammation response syndrome on admission. Initial wound microbiology and the changes in wound microbiology were analysed during the clinical course and correlated with outcome and risk indicators. Overall mortality was 35%. Higher age, a high Charlson Comorbidity Index or ASA score and truncal infections were highly prognostic for a lethal outcome. Microbiological findings revealed significant differences in the persistence of bacteria during the course of disease. Streptococci were only detectable within the first 5 days, whereas other bacteria persisted over a longer period of time. Initial microbiological findings correlated with better prognosis when no causative agent was identified and for gram-negative rods. Varying survival rates were observed for different Streptococci, Staphylococci, Enterococci and other bacteria. The highest odds ratio for a lethal outcome was observed for Enterococci and fungi. Microbiological colonization changes during the clinical course of NSTIs and some microbiologic pathogens are predictive for worsening the outcome and survival. Streptococcus pyogenes is only detectable in the very early phase of NSTI and after 6 days not anymore detectable. Later Enterococci and fungi showed the highest odds ratios for a lethal outcome. Enterococci bacteria and fungi have yet not been considered of clinical relevance in NSTI or even as indicator for worsening the outcome.

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