Patient, parent and professional expert perspectives on personalized regenerative implants: a qualitative focus group study.

Background: Perspectives of patients, parents and professional experts on personalized regenerative implants for regenerative medicine purposes are largely unknown.Method: To better understand these perspectives, we conducted four focus groups with professional experts of mixed European nationality (n = 8), Dutch patients with regular implants (n = 8), Dutch and Belgian (n = 5) and Spanish (n = 8) parents of children with cleft palate.Results: Two overarching themes were identified: 'patient-centered research and care' and 'ambivalent attitudes toward personalized regenerative implants'.Discussion: The results reveal that stakeholders should adopt a participatory rather than an impairment discourse and address the ambivalence among professional experts, patients and parents.Conclusion: Considering stakeholder perspectives facilitates ethical and responsible development and use of personalized regenerative implants.

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Updating a conceptual model of effective symptom management in palliative care to include patient and carer perspective: a qualitative study.

BACKGROUND: A conceptual model of effective symptom management was previously developed from interviews with multidisciplinary healthcare professionals (HCP) working in English hospices. Here we aimed to answer the question; does a HCP data-derived model represent the experience of patients and carers of people with advanced cancer? METHODS: Semi-structured interviews were undertaken with six patients with advanced cancer and six carers to gain an in-depth understanding of their experience of symptom management. Analysis was based on the framework method; transcription, familiarisation, coding, applying analytical framework (conceptual model), charting, interpretation. Inductive framework analysis was used to align data with themes in the existing model. A deductive approach was also used to identify new themes. RESULTS: The experience of patients and carers aligned with key steps of engagement, decision making, partnership and delivery in the HCP-based model. The data aligned with 18 of 23 themes. These were; Role definition and boundaries, Multidisciplinary team decision making, Availability of services/staff, Clinician-Patient relationship/rapport, Patient preferences, Patient characteristics, Quality of life versus treatment need, Staff time/burden, Psychological support -informal, Appropriate understanding, expectations, acceptance and goals- patients, Appropriate understanding, expectations, acceptance and goals-HCPs, Appropriate understanding, expectations, acceptance and goals- family friends, carers, Professional, service and referral factors, Continuity of care, Multidisciplinary team working, Palliative care philosophy and culture, Physical environment and facilities, Referral process and delays. Four additional patient and carer-derived themes were identified: Carer Burden, Communication, Medicines management and COVID-19. Constructs that did not align were Experience (of staff), Training (of staff), Guidelines and evidence, Psychological support (for staff) and Formal psychological support (for patients). CONCLUSIONS: A healthcare professional-based conceptual model of effective symptom management aligned well with the experience of patients with advanced cancer and their carers. Additional domains were identified. We make four recommendations for change arising from this research. Routine appraisal and acknowledgement of carer burden, medicine management tasks and previous experience in healthcare roles; improved access to communication skills training for staff and review of patient communication needs. Further research should explore the symptom management experience of those living alone and how these people can be better supported.

Nurturing Resilient Health Ecosystems: What Can We Learn From Patient and Professional Experience?

Patients and professionals face important crises through their "normal" experiences of illness and care, which can either prepare them or make them more vulnerable to global crises. What can we learn from these experiences to nurture more resilient health ecosystems? In this commentary, we reflect on resilience in times of crisis, based on our lived experience as patient and physician. We learned that identifying "who is strong" and "who is vulnerable" can be surprising and unexpected, that patients and professionals can lean on one another at different stages of crises and that resilient health ecosystems require reciprocal, caring relationships at the individual and collective levels.

Patient, caregiver and professional views on preventable emergency admissions of older patients, a multi-method study in three Dutch hospitals.

BACKGROUND: Older adults are too often hospitalized from the emergency department (ED) without needing hospital care. Knowledge about rates and causes of these preventable emergency admissions (PEAs) is limited. This study aimed to assess the proportion of PEAs, the level of agreement on perceived preventability between physicians and patients, and to explore their underlying causes as perceived by patients, their relatives, and the admitting physician. METHODS: A multi-center multi-method study at the ED of one academic and two regional hospitals in the Netherlands was performed. All patients aged > 70 years and hospitalized from the ED were consecutively sampled during a six-week period. Quantitative data regarding patient and clinical characteristics and perceived preventability of the admission were prospectively collected from the electronical medical record and analyzed using descriptive statistics. Agreement on preventability between patient, caregivers and physicians was assessed by using the Cohen's kappa. Underlying causes of a PEA were subsequently collected by semi-structured interviews with patients and caregivers. Physician's perceived causes of a PEA were collected by telephone interviews and by open-ended questions sent by email. Thematic content analysis was used to analyze the interview transcripts and email narratives. RESULTS: Out of 773 admissions, 56 (7.2%) were deemed preventable by patients or their caregivers. Admitting physicians regarded 75 (9.7%) admissions as preventable. The level of agreement between these two groups was low with a Cohen's kappa score of 0.10 (p = 0.003). Perceived causes for PEAs related to six themes: (1) insufficient support at home, (2) suboptimal care in the community setting, (3) errors in hospital care, (4) time of presentation to ED and availability of resources, (5) delayed help seeking behavior, and (6) errors made by patients. CONCLUSIONS: Our findings contribute to the existing evidence that a substantial part (almost one out of ten) of the older adults visiting the ED is perceived as unnecessary hospital care by patients, caregivers and health care providers. Findings also provide valuable insight into the causes for PEAs from a patient perspective. Further research is needed to understand why the perspectives of those responsible for hospital admission and those being admitted vary considerably.

Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach.

OBJECTIVE: Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals. METHODS: This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24). RESULTS: Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES. CONCLUSION: The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

The opinions and experiences of nursing students, nurses, and patients regarding clinical practices: A mixed-methods study.

The aim of this mixed-methods study was to examine the experiences of nursing students (NSs), nurses, and patients regarding the clinical practices of NSs and to determine NSs' stress levels regarding clinical practices. The quantitative part of the study was completed with 240 NSs, and the "Perceived Stress Scale for Nursing Students" was used. In the qualitative part, the focus group interviews were held with 24 NSs, and the individual interviews were conducted with 15 patients and 20 nurses. Descriptive and stepwise regression analyses were used to analyze quantitative data, and narrative analysis was used to analyze qualitative data. Regression analysis determined that the age, grade point average, and attitude of mentors were associated with the perceived stress levels of NSs. In the narrative analysis of the data obtained from the interviews with NSs and nurses, four categories were identified: Emotions, Facilitators, Barriers, Roles, and Competencies. Three categories (Emotions, Problems, Roles, and Competencies) were identified from patient interviews. This study showed that NSs' clinical practice experiences were affected by many factors and experienced high stress during clinical practice.

Compassionate care through the eyes of patients and physicians: An interview study.

BACKGROUND: Although compassion is a crucial element of physicians' professional performance and high-quality care, research shows it often remains an unmet need of patients. Understanding patients' and physicians' perspectives on compassionate care may provide insights that can be used to foster physicians' ability to respond to patients' compassion needs. Therefore, this study aims to understand how both patients and physicians experience the concept and practice of compassionate care. METHODS: We conducted semi-structured interviews with eight patients and ten resident physicians at a University Medical Center in the Netherlands. Using thematic analysis, we separately coded patient and resident transcripts to identify themes capturing their experiences of compassionate care. This study was part of a larger project to develop an educational intervention to improve compassion in residents. RESULTS: For both patients and residents, we identified four themes encompassing compassionate care: being there, empathizing, actions to relieve patients' suffering, and connection. For residents, a fifth theme was professional fulfillment (resulting from compassionate care). Although patients and residents both emphasized the importance of compassionate care, patients did not always perceive the physician-patient encounter as compassionate. According to residents, high workloads and time pressures hindered their ability to provide compassionate care. DISCUSSION AND CONCLUSION: Patients and residents have similar and varying understandings of compassionate care at the same time. Understanding these differences can aid compassion in medical practice. Based on the findings, three topics are suggested to improve compassion in residents: (1) train residents how to ask for patients' compassion needs, (2) address residents' limiting beliefs about the concept and practice of compassion, and (3) acknowledge the art and science of medicine cannot be separated.

Centro de Información y Derivación de Pacientes (CIDP)

Estamos fortaleciendo el Centro de Información y Derivación de Pacientes (CIDP) para mejorar la coordinación en la atención médica durante emergencias y situaciones de plétora de los servicios.

Improving patients', carers' and primary care healthcare professionals' experiences of discharge communication from specialist palliative care to community settings: a protocol for a qualitative interview study.

BACKGROUND: Patients who have benefited from specialist intervention during periods of acute/complex palliative care needs often transition from specialist-to-primary care once such needs have been controlled. Effective communication between services is central to co-ordination of care to avoid the potential consequences of unmet needs, fragmented care, and poor patient and family experience. Discharge communications are a key component of care transitions. However, little is known about the experiences of those primarily receiving these communications, to include patients', carers' and primary care healthcare professionals. This study aims to have a better understanding of how the discharge communications from specialist palliative care services to primary care are experienced by patients, carers, and healthcare professionals, and how these communications might be improved to support effective patient-centred care. METHODS: This is a 15-month qualitative study. We will interview 30 adult patients and carers and 15 healthcare professionals (n = 45). We will seek a range of experiences of discharge communication by using a maximum variation approach to sampling, including purposively recruiting people from a range of demographic backgrounds from 4-6 specialist palliative care services (hospitals and hospices) as well as 5-7 general practices. Interview data will be analysed using a reflexive thematic approach and will involve input from the research and advisory team. Working with clinicians, commissioners, and PPI representatives we will co-produce a list of recommendations for discharge communication from specialist palliative care. DISCUSSION: Data collection may be limited by the need to be sensitive to participants' wellbeing needs. Study findings will be shared through academic publications and presentations. We will draft principles for how specialist palliative care clinicians can best communicate discharge with patients, carers, and primary care clinicians. These will be shared with clinicians, policy makers, commissioners, and PPI representatives and key stakeholders and organisations (e.g. Hospice UK) and on social media. Key outputs will be recommendations for a specialist palliative care discharge proforma. TRIAL REGISTRATION: Registered in ISRCTN Registry on 29.12.2023 ref: ISRCTN18098027.

Attitudes of patients and mental health professionals towards hypothetical use of serious games in psychotherapy.

Serious games are increasingly being applied within healthcare, but their integration in psychotherapeutic settings is less documented. OBJECTIVES: The present study sought to identify the attitudes of psychotherapists and patients towards the hypothetical use of serious games in psychotherapy in the South African context. METHODS: Online surveys assessed acceptance, experience, and requirements for the utilisation of serious games in therapeutic contexts. Clients utilising mental health services (n = 209) and psychotherapists delivering mental health services (n = 156) in South Africa completed the online survey. RESULTS: Knowledge about serious games is limited with only 15% of clients and 16% of therapists reporting knowledge of the existence and application of serious games. Use of serious games is even more infrequent with only 1% of therapists and 6% of clients currently using serious games as an intervention. Despite this, our findings highlight an apparent demand for their use, with 71% of therapists indicating that serious games would be a suitable adjunct treatment modality for their patients. Our results show a general openness toward the use of serious games in psychotherapy. CONCLUSION: The use of serious games as an e-mental health treatment modality is conceivable for both patients and therapists, particularly as a complementary strategy to traditional face-to-face psychotherapy.

Patients' and Caregivers' Suggestions for Improving Assisted Dying Regulation: A Qualitative Study in Australia and Canada.

INTRODUCTION: Assisted dying (AD) has been legalised in a small but growing number of jurisdictions globally, including Canada and Australia. Early research in both countries demonstrates that, in response to access barriers, patients and caregivers take action to influence their individual experience of AD, as well as AD systems more widely. This study analyses how patients and caregivers suggest other decision-makers in AD systems should address identified issues. METHODS: We conducted semistructured, qualitative interviews with patients and caregivers seeking AD in Victoria (Australia) and three Canadian provinces (British Columbia, Ontario and Nova Scotia). Data were analysed using reflexive thematic analysis and codebook template analysis. RESULTS: Sixty interviews were conducted with 67 participants (65 caregivers, 2 patients). In Victoria, this involved 28 interviews with 33 participants (32 caregivers, 1 patient) about 28 patient experiences. In Canada, this involved 32 interviews with 34 participants (33 caregivers, 1 patient) about 33 patient experiences. We generated six themes, corresponding to six overarching suggestions by patients and caregivers to address identified system issues: (1) improved content and dissemination of information about AD; (2) proactively develop policies and procedures about AD provision; (3) address institutional objection via top-down action; (4) proactively develop grief resources and peer support mechanisms; (5) amend laws to address legal barriers; and (6) engage with and act on patient and caregiver feedback about experiences. CONCLUSION: AD systems should monitor and respond to suggestions from patients and caregivers with firsthand experience of AD systems, who are uniquely placed to identify issues and suggestions for improvement. To date, Canada has responded comparatively well to address identified issues, whereas the Victorian government has signalled there are no plans to amend laws to address identified access barriers. This may result in patients and caregivers continuing to take on the burdens of acting to address identified issues. PATIENT OR PUBLIC CONTRIBUTION: Patients and caregivers are central to this research. We interviewed patients and caregivers about their experiences of AD, and the article focuses on their suggestions for addressing identified barriers within AD systems. Patient interest groups in Australia and Canada also supported our recruitment process.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

The quality of life of people with multiple sclerosis in Portugal

Introduction: Multiple sclerosis significantly affects the quality of life of those suffering from this specific condition. Objective: To assess the quality of life of people with multiple sclerosis and analyse the correlation between the disease and its associated effects and different sociodemographic, clinical, and functional variables. Materials and Methods: An observational, cross-sectional, descriptive-correlational and quantitative study conducted using a non-probabilistic convenience sample composed of 70 patients suffering from multiple sclerosis registered with the Multiple Sclerosis Association of the Central Region of Portugal. The data collection protocol included sociodemographic and clinical questions, the Family Apgar Scale, and the Barthel Index. Descriptive and inferential statistics were used to process the data. Data collection took place between April and July 2021. Results: The majority of participants reported a moderate overall quality of life (M=51,78 ± 24,09). Higher scores were observed in the social relationships and environmental health domains, while lower scores were recorded for the physical domain. Better quality of life was found to be positively associated with being under 45 years old, having higher educational qualifications, living in functional families, and experiencing greater functional independence in activities of daily living. Discussion: The variables with the strongest association were those capable of influencing the physical and social domains. Those variables explained 59.00% and 53.00% of the variability. Conclusions: These results indicate that people with multiple sclerosis have a compromised quality of life, highlighting the need for new strategies focusing on early diagnosis and effective preventive interventions meant to improve quality of life across all its domains.

Hipouricemia con hipercalciuria. Estudio longitudinal y revisión del tema / Hypouricemia with hypercalciuria: Longitudinal study and review of the topic

Antecedentes y objetivo: La asociación de hipouricemia e hipercalciuria es poco frecuente. En 1974 se describió un nuevo síndrome nominado Hipouricemia con hipercalciuria y reducción de la densidad ósea. Posteriormente, se publicaron algunos casos con esa asociación en los que la excreción fraccional de urato era superior a 20/100ml FGR. Hemos analizado una serie de niños que fueron diagnosticados de hipouricemia e hipercalciuria y que fueron controlados evolutivamente. El objetivo del trabajo es intentar conocer si nuestros pacientes podrían estar afectos del síndrome antes mencionado o ser portadores de una variante de hipercalciuria idiopática. Pacientes y métodos: Estudio retrospectivo longitudinal en el que se estudiaron las historias clínicas de 8 pacientes (5V y 3M) diagnosticados de hipouricemia e hipercalciuria en la infancia. Se anotaron la clínica al diagnóstico, los hallazgos ecográficos y densitométricos, y determinadas variables bioquímicas, con especial hincapié en el manejo tubular renal del urato. Los resultados se compararon con los de 36 niños afectos de hipercalciuria idiopática sin hipouricemia (14V y 22M). Resultados: En el grupo con hipouricemia los niveles iniciales de uricemia fueron 1,9 (0,3) mg/dl (rango: 1,5-2) y los del cociente calcio/creatinina en primera orina del día, 0,27 (0,05) mg/mg (rango: 0,23-0,31). En todos los casos la excreción fraccional de urato fue inferior a 20ml/100ml FGR. Los valores de z-DMO fueron menores de −1 en 4/8 casos. En el último control, solo en 3 casos persistía el cociente calcio/creatinina elevado, y en todos la uricemia era superior a 2mg/dl. El valor de z-DMO había mejorado en 5 casos y empeorado en otros 3... (AU)

Background and objective: The association of hypouricemia and hypercalciuria is rare. In 1974 a new syndrome named Hypouricemia with hypercalciuria and decreased bone density was described. Afterwards, some cases with such association were published in which the fractional excretion of urate was higher than 20/100ml FGR. We have analyzed a series of children who were diagnosed with hypouricemia and hypercalciuria and who were monitored. The aim of this study was to determine whether our patients could be affected by the aforementioned syndrome or be carriers of a variant of idiopathic hypercalciuria. Patients and methods: Retrospective longitudinal study in which the medical records of eight patients (5V and 3M) diagnosed with hypouricemia and hypercalciuria in childhood. Clinical features at diagnosis, ultrasound and densitometric findings and selected biochemical variables were noted, with special emphasis on renal tubular handling of urate. Results were compared with 36 children with idiopathic hypercalciuria without hypouricemia (14V and 22M). Results: In the hypouricemia group baseline urate levels were 1.9 (0.3)mg/dl (range: 1.5-2) and first day urine calcium/creatinine ratio 0.27 (0.05)mg/mg (range: 0.23-0.31). In all cases fractional urate excretion was less than 20/100ml FGR. The z-DMO values were less than −1 in 4/8 cases. At the last follow-up only three cases still had an elevated calcium/creatinine ratio and in all of them the urates levels was greater than 2mg/dl. The z-DMO value had improved in five cases and worsened in three others. In relation to the group without hypouricemia, no differences were observed between the various parameters studied including the z-DMO value, with the exception of fractional excretion and tubular urate reabsorption although plasmatic uric acid levels were still significantly lower... (AU)