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To investigate what works when using Patient-Reported Outcome Measures (PROMs), for whom, in what contexts, and why in four Value-Based Healthcare (VBHC) programmes.
Realist evaluation.
Evaluation of Heart Failure, Parkinson's Disease, Epilepsy and Cataract surgery programmes using data from a scoping review, documentary analysis, questionnaires, quantitative routinely collected data and semi-structured interviews with staff, patients and carers (July 2022–August 2023). Programme theories and logic models were developed, tested and refined.
We conducted 105 interviews (67 patients, 21 carers and 17 staff) and collected data from 230 patients (66 Epilepsy, 140 Heart Failure and 24 Parkinson's Disease) and 14 staff via questionnaires. Clinicians used PROMs data to regularly monitor patients with Heart Failure and Epilepsy, which resulted in better triage and tailoring treatment, prioritisation of access based on the urgency of need, and facilitation of referral to relevant professionals. In Heart Failure, this further resulted in a more efficient provision of care and better use of resources, care closer to home, improved health outcomes (e.g., better symptom management) and service redesign. The same was not observed in Epilepsy, as patients who required mental health treatment had to be referred, but they were not always able to access specialist services. PROMs were discontinued in Cataract surgery services mainly due to the lack of integrated IT systems, which caused an increased workload and staff resistance. In Parkinson's Disease, patients were asked to complete PROMs even though the information was not consistently being used.
Findings challenge the orthodoxy that implementing PROMs is universally good and brings about real improvements in patient outcomes in a VBHC context. PROMs are generally ill-suited for long-term use with patients in routine care without further adaptation. Greater staff and patient involvement are imperative to enhance the acceptability and relevance of the programmes.
Patient-Reported Outcome Measures can improve care when embedded in well-supported systems. Implementation must be realistic, involve staff and patients, and be underpinned by clear leadership and robust digital infrastructure. Co-designed patient-facing tools can improve accessibility and engagement.
What problem did the study address? There is limited evidence on how Patient-Reported Outcome Measures function across different routine healthcare contexts. What were the main findings? Patient-Reported Outcome Measures improved care in Heart Failure but not in other services, largely due to contextual barriers. Where and on whom will the research have an impact? Findings are relevant for clinicians, service designers, and policymakers seeking to implement meaningful person-centred outcome measurement in long-term conditions.
We adhered to Realist and Meta-narrative Evidence Syntheses: Evolving Standards II guidance and to the Guidance for Reporting Involvement of Patients and the Public.
The study was developed alongside a wide range of patient and public stakeholders involved in the Aneurin Bevan University Health Board Value-Based Healthcare programme, third sector and specific individuals and groups representing the four included services (i.e., St. David's Hospice Care, British Heart Foundation, Digital Communities Wales, Epilepsy Action, Digital Communities Wales, Parkinson's UK Cymru, Race Equality First, Aneurin Bevan Community Health Council, Value- Based Healthcare Patient Reference Group and Wales Council of the Blind). A total of 10 virtual meetings were strategically planned to address gaps, assist in the interpretation of findings, and ensure that outcomes were pertinent and accessible to the specific needs and circumstances of under-represented or vulnerable groups.
To explore why parents consent to or decline organ donation after their child's death and identify the factors that influence their decision-making.
Mixed-methods analysis of routinely collected quantitative and qualitative data from 594 cases in the United Kingdom between 2018 and 2024.
Quantitative analysis of clinical and demographic variables of potential donors, including regression analyses examining associations with parental consent. Qualitative content analysis and frequency counts of anonymised clinical notes of parental discussions and decision-making. Integration of quantitative and qualitative findings on similar phenomena of interest.
For each additional life-year of the child, the odds of parental consent increased by 6%; the odds of consent among white families were five times higher than those of non-white families; and the odds of consent for donation after brainstem death were 1.78 times higher than those for donation after circulatory death. Parental non-support was influenced by the perception that organ donation prolonged or altered end-of-life care, cultural and religious beliefs and the need for surgery. Factors facilitating consent included altruism, creating a positive legacy, and prior knowledge of organ donation. Parents fell into four decision groups: those who immediately consented, hesitated but consented, hesitated but declined and immediately declined.
This study provides new insights and theories about which parents are more likely to consent to paediatric organ donation. Findings highlight a range of factors that shape parental decisions and the need for approaches tailored to the varied concerns and complexities that parents face in navigating end-of-life care for their child. Developing specific support strategies that acknowledge contextual, religious and procedural concerns may enhance consent rates and facilitate a more bespoke family-centred approach to paediatric organ donation and palliative care. Other countries achieve better paediatric consent rates, suggesting there is potential to further improve policy and practice, underpinned by a programme of research.
What is already known: Internationally, there is a shortage of organs for paediatric transplants, and parental consent is the limiting factor in most high-income countries. Paediatric organ donation is unique from adults, and there is limited research into why parents consent to or decline organ donation for their child. What this paper adds: This analysis identified a range of interconnected factors that could positively or negatively influence parental consent decisions, with emotional, logistical, procedural and religious factors acting as critical barriers to consent. Additionally, parents were categorised into four decision-making groups that have distinct decision-making patterns and characteristics. Implications for practice and policy: These findings provide a foundation for better understanding why parents choose not to consent to organ donation for their child, which can begin to inform the development of policies and practices that better create the conditions for consent and a more family-centred approach in paediatric end-of-life care.
This study highlights critical factors predicting and shaping parental decisions and indicates a need for approaches tailored to the emotional and logistical complexities that parents face. Specific support strategies that acknowledge contextual, religious and procedural concerns may facilitate a more bespoke family-centred approach to paediatric end-of-life care and enhance organ donation consent rates.
What problem did the study address? Internationally, there is a shortage of organs available for children in need of transplants. Parental consent for paediatric organ donation is a limiting factor in most high-income countries. The emotive nature of a child's death makes paediatric organ donation complex and unique, and there is limited research on the factors influencing parental decision-making and the reasons parents choose to consent to or decline organ donation after their child's death. What were the main findings? We identified a range of interconnected factors that could positively or negatively influence parental consent decisions, with emotional, logistical, procedural and religious factors acting as critical barriers to consent. For the first time, parents have been categorised into four decision-making groups that have distinct decision-making patterns and characteristics. A novel and prevalent factor that negatively impacted consent was that organ donation prolonged or altered end-of-life care, often due to organ donation being raised after plans had been made for end-of-life care. This highlights the need for health systems to adopt proactive and timely approaches to integrating paediatric organ donation with care pathways. This study also identified that parents were 1.78 times more likely to consent to organ donation via a donation by brain death pathway compared to a donation by circulatory death pathway. Where and on whom will the research have an impact? This is the largest study of paediatric organ donation outside of the United States (where the healthcare system is predominantly for-profit and therefore a different model and context compared to the United Kingdom) and provides new insights and understandings that can assist Specialist Nurses in Organ Donation, clinical teams and palliative care specialists in tailoring their approach to end-of-life care to achieve the best consent outcome for each child, their parents and wider family. Findings provide a valuable foundation for the development of future research and developments in policy and practice in the United Kingdom and countries with similar health systems. Findings also include generalisable insights that can be utilised internationally, irrespective of the health system.
This study adhered to the Good Reporting of a Mixed-Methods Study (GRAMMS) reporting standards.
Patients or the public were not involved in this study.
To develop an in-depth understanding of peoples' perceptions and experiences of decision-making and reasons why they declined the opportunity of a kidney transplant.
The Theory of Planned Behaviour informed the qualitative interpretative phenomenological analysis.
Semi-structured interviews were conducted between August 2022 and June 2023 with thirty adults in the United Kingdom who had declined a kidney transplant. Interviews were digitally recorded and transcribed verbatim.
Deciding against having a kidney transplant for the majority of people was a concrete decision. Multiple reasons transcended four cross cutting themes: The impact of negative past experiences on kidney transplant decision-making, Negative attitudes, beliefs, and perceptions towards kidney transplantation, Preferred not to have a kidney transplant, and Perceived benefits of deciding against a kidney transplant. Earlier negative experiences culminated in mistrust. People feared kidney transplant failure and were not willing to take the risk of being worse off. Some people perceived they were too old and preferred younger people to be offered available kidneys. COVID-19 negatively impacted some people's decisions.
Despite people's decisions being perceived as at odds with healthcare professionals and current policies to increase transplantation rates, overall, the decision not to have a kidney transplant appeared carefully thought through.
People's choices were informed, multifaceted and shaped by personal experiences, perceived risks and individual values. Recognising these factors is essential in improving patient-centred care and shared decision-making. Nurse-led patient education needs to carefully balance promoting kidney transplant as the preferred kidney replacement treatment option.
The findings contribute new understanding and theory as to why people living with kidney failure decide against having a kidney transplant. Perceived benefits of not having a transplant outweighed potential advantages, and patients exercised their legal right to make an informed decision.
COREQ and SRQR.
People living with kidney disease were involved from the outset; their contributions included prioritising the research question, shaping the study design, commenting on participant documents, analysing, interpreting findings and dissemination.
FreshRSS 