Care Perspective Research Articles

Describing and assessing behavioural symptoms in amyotrophic lateral sclerosis with and without frontotemporal dementia: a scoping review.

Alongside motor and cognitive symptoms, amyotrophic lateral sclerosis (ALS) and ALS with frontotemporal dementia (ALSFTD) present with behavioural symptoms, which can be challenging for all affected by the disease. A scoping review of studies published between 2011 and 2024 was conducted to present the breadth of behavioural symptoms in ALS and ALSFTD, explore how they are described and assessed, and identify patterns in the literature. This scoping review identified 3939 articles, with 111/3939 meeting eligibility criteria. Most studies were from Australia (23.22%), Italy (16.94%) and the UK (14.29%); 75.67% were cross-sectional. Sample size ranged from 1 to 1013, as case studies were included. Overall mean age (100/111 studies) was 61.32 (SD = 4.15). Proportion of male patients (reported 102/111 studies) was 61.49%; mean disease duration (reported in 86/111 records) was 32.63 months (SD = 24.72). Papers described a broad range of behavioural symptoms (465 examples), which were thematically collated into seven categories: disinhibition (27.74%), apathy (25.16%), perseverative/compulsive behaviours (17.42%), hyperorality (10.53%), loss of sympathy or empathy (8.6%), psychotic symptoms (7.74%), and loss of insight about disease and changes (2.8%). Most studies (78.37%) used validated behavioural assessments that elicited carer's perspectives. Despite extensive evidence of behavioural symptoms in ALS, implementation of assessments and management of behavioural symptoms in clinical care remain limited. Clinicians must assess behavioural symptoms, as these can negatively affect disease prognosis, patient treatment engagement and increase family distress. Measures capturing carers' perspectives through interviews are ideal as they can reveal anosognosia, lack of sympathy and lack of empathy.

Regional Patterns of Invasive Interventions for Unresectable Liver Cancer: Perspectives of Elective and Urgent Care in Brazil

Regional Patterns of Invasive Interventions for Unresectable Liver Cancer: Perspectives of Elective and Urgent Care in Brazil

Dual Malignancies in Geriatric Cancer Patients: A Radiation Oncologist’s Perspective of Clinical Care

Abstract Background: Data pertaining to dual malignancies in the geriatric population are not only sparse but also heterogeneous. The present study evaluated the pattern of care for geriatric dual malignancy patients at a tertiary care center. Materials and Methods: We retrospectively collected data from all dual malignancy patients of and above the age of 65 years registered in the radiation oncology department of a single tertiary care center. Results: 456 geriatric cancer patients were registered between January 2019 and July 2021,out of which 48 patients had dual malignancy (10.5%). The distribution of index malignancy was six (12.5%) patients each of carcinoma oropharynx and prostate. Thirty-two (66.7%) patients developed metachronous malignancies. The mean difference in the development of the second malignancy was 3.4 years. Eleven (22.9%) patients developed carcinoma lung as a second malignancy. The primary treatment received by 38 (79.2%) patients was radical. Conclusion: Geriatric patients with synchronous malignancies pose a therapeutic challenge and the decision is achieved by a multidisciplinary approach.

Care resignification in the pandemic context.

This essay discusses the care process of health professionals in the context of COVID-19 from the perspectives of psychoanalysis, under the prism of Donald Winnicott's transitional space, and of collective health, under the prism of the practical wisdom of José Ricardo Ayres, the micropolitics of live work in action by Emmerson Merhy, and prudent care by Ruben Mattos. It suggests elaborating a care perspective to propose a possible resignification of illness in a pandemic, where health is marked with calamity, health catastrophe, and suffering and anguish, whether in the body or subjectively. In this way, understanding the manifestation of care by health professionals in a pandemic context brought about with narcissistic and heroic meanings and feelings of impotence and helplessness contributes to elaborating a creative conception of care. We conclude that the perspective of expanded care favors the creative possibility of new productions of meaning and support for professionals, resignifying their life experiences through love, creativity, practical wisdom, prudent care, live work in action, and motor imaginary.

Long-term outcomes in virtual surgical planning for mandibular reconstruction: A cost-effectiveness analysis.

This study is an economic evaluation comparing virtual surgical planning (VSP) utilization to free hand mandibular reconstruction (FHR) for advanced oral cavity cancer, for which the cost effectiveness remains poorly understood. The proposed clinical benefits of VSP must be weighed against the additional upfront costs. A Markov decision analysis model was created for VSP and FHR based on literature review and institutional data over a 35-year time horizon. Model parameters were derived and averaged from systematic review and institutional experience. VSP cost and surgical time saving was incorporated. We accounted for long-term risks including cancer recurrence and hardware failure/exposure. We calculated cost in US dollars and effectiveness in quality-adjusted-life-years (QALYs). A health care perspective was adopted, discounting costs and effectiveness at 3%/year. Deterministic and probabilistic sensitivity analyses tested model robustness. In the base case scenario, total VSP strategy cost was $49,498 with 8.37 QALYs gained while FHR cost was $42,478 with 8.27 QALY gained. An incremental cost-effectiveness ratio (ICER), or the difference in cost/difference in effectiveness, for VSP was calculated at $68,382/QALY gained. VSP strategy favorability was sensitive to variations of patient age at diagnosis and institutional VSP cost with one-way sensitivity analysis. VSP was less economically favorable for patients >75.5 years of age or for institutional VSP costs >$10,745. In a probabilistic sensitivity analysis, 55% of iterations demonstrated an ICER value below a $100,000/QALY threshold. VSP is economically favorable compared to FHR in patients requiring mandibular reconstruction for advanced oral cancer, but these results are sensitive to the patient's age at diagnosis and the institutional VSP cost. Our results do not suggest if one "should or should not" use VSP, rather, emphasizes the need for patient selection regarding which patients would most benefit from VSP when evaluating quality of life and long-term complications. Further studies are necessary to demonstrate improved long-term risk for hardware failure/exposure in VSP compared to FHR.

FERAL WOOL. Designing with a vibrant matter with care and cosmoecological perspective in times of troubled abundance

FERAL WOOL. Designing with a vibrant matter with care and cosmoecological perspective in times of troubled abundance

Caring and striving: toward a new consumer identity in the process of consumption reduction

Adoption of sufficiency-oriented lifestyles is an important part of curbing overconsumption, yet many individuals who try to reduce their consumption volumes experience social difficulties. Combining the perspectives of care and sufficiency-oriented lifestyle changes, this article aims to contribute to the understanding of why such social obstacles occur, how they might be counteracted and in what ways social relations instead may facilitate consumption reduction. Starting from an interview study with 25 Swedish consumption reducers, this article builds on a processual theory of consumer identity and the perspective of care to explore how care and consumption are (re)negotiated in the different stages of reduction. The results highlight the different aspects of care involved in consumption reduction – from motivations for change to negotiations toward a more holistic understanding of care – and show that consumption reduction in many ways is an ongoing process of both caring and striving. By emphasizing how care is renegotiated in a gradual construction of a caring consumer identity, this article discusses the importance of maintaining a sensitivity to the multi-faceted nature of care, acknowledging it both as a source of difficulties and as a key driver for sufficiency-oriented lifestyle changes.

Cost-Effectiveness of a Home Telemonitoring System for Asian Adults with Type 2 Diabetes Mellitus.

Background: Telemonitoring programs have been found to be effective in improving diabetic control by promoting patients' self-management of diabetes through medication adherence, dietary modifications, and exercise. Nonetheless, few studies have assessed the cost-effectiveness of telemonitoring for the self-management of diabetes based on real-world data. Methods: A randomized controlled trial entitled Optimizing care of Patients via Telehealth In Monitoring and Augmenting their control of Diabetes Mellitus was conducted among adults with Type 2 Diabetes Mellitus in Singapore. Individuals in the intervention group (n = 159) underwent a telemonitoring program comprising of remote patient monitoring, education, individualized health coaching, and teleconsultations, whereas individuals in the control group (n = 160) received regular care. Economic evaluation was conducted from health care system and societal perspectives in 2020 in Singapore dollars, using health outcomes and costs documented at baseline and at 6 month follow-up. One-way sensitivity analyses and bootstrapping to generate scatter plot on cost-effectiveness planes were done. Results: The adjusted reduction in HbA1c scores was greater in the intervention group by -0.41 (95% confidence interval [CI], -0.65 to -0.17), while the change in utility scores was higher in the intervention group by 0.011 (95% CI, -0.016 to 0.0378). From a health care perspective, the incremental cost-effectiveness ratio (ICER) of the telemonitoring program per unit improvement in HbA1c, per additional case of well-controlled diabetes, and per unit improvement in quality adjusted life years was SGD 580.44, SGD 9100.15, and SGD 21,476.36, respectively. From a societal perspective, the ICERs were SGD 817.20, SGD 12,812.02, and SGD 30,236.36, respectively. Conclusions: The Optimizing care of Patients via Telehealth In Monitoring and Augmenting their control of Diabetes Mellitus telemonitoring program was effective and potentially cost-effective for the management and control of diabetes among patients in primary care.

O impacto do processo transexualizador na saúde reprodutiva da população transgênero

Introduction: From a health care perspective, gender identity is a vulnerability factor. Transgender people generally seek health services at reproductive age for the transsexualization process, unaware of its impact on fertility. Objective: To determine the percentage of transgender people who are advised on reproductive health and the impacts of the transsexualization process. Method: Descriptive cross-sectional study applied using Google Forms. Transgender participants aged 18 or over were included, captured by disseminating the reserch on social media in partnership with Non-Governmental Organizations (NGOs) involved with the LGBTQIA+ public. Results: 105 individuals were evaluated, the majority of them underwent hormonal therapy and were not advised on fertility preservation, although more than 90% would liked to have been. 25.7% would be willing to postpone the transsexualization process to increase the chance of having biological children. Discussion: Although it alleviates dysphoric symptoms, the transsexualization process can pose risks to fertility. Fertility preservation procedures are rarely performed by transgender people, due to cost, lack of information and the desire not to delay the transsexualization process. Conclusion: 67.5% of participants were not instructed on fertility preservation, highlighting the gap in transgender health care for safe family planning and reproductive satisfaction.

Rizatriptan as an Over-the-Counter Triptan in the Treatment of Migraine Attacks.

Around 91% of migraine patients use over-the-counter medicines to treat attacks, often without further treatment or medical consultation. This therapeutic principle is established in most countries, regardless of how the healthcare system is otherwise structured or financed. Using Germany as an example, the basis for an expansion of attack therapy with rizatriptan as an over-the-counter triptan is described. To achieve the best possible tolerability and safety in the context of self-medication, the lowest possible dose should be selected to provide the most favourable tolerability and safety profile in the context of self-medication through low dosages. The lowest approved dose of rizatriptan is 5mg. This was investigated in three randomized controlled trials with 752 patients. The results show that rizatriptan at a dose of 5mg is more effective than the triptans naratriptan 2.5mg, almotriptan 12.5mg and sumatriptan 50mg, which were previously available for self-medication in Germany. There was no significant difference in the frequency of adverse events with rizatriptan 5mg compared to placebo. Rizatriptan 5mg does not have a higher side effect potential than sumatriptan 50mg, which is already exempt from the prescription requirement. The reasons given show that rizatriptan in a dose of 5mg for the treatment of acute migraine attacks fulfils the requirements for a transfer from prescription to pharmacy-only status at least as well as sumatriptan 50mg, naratriptan 2.5mg and almotriptan 12.5mg. From a clinical care perspective, it is desirable for affected patients to have other options available for self-medication. Non-responders to other substances also have a further treatment option with rizatriptan 5mg, with the same or even better risk-benefit profile, to treat migraine attacks safely, effectively and in a tolerable manner as part of self-medication.

Providing equity-oriented care and services: Perspectives of primary care nurses working in Nunavik Inuit communities

Health inequities experienced by Indigenous Peoples are the consequence of unbalanced structural determinants of health, mainly due to systemic racism and colonialism. Primary care registered nurses face multiple challenges, including lacking resources to care for these communities and address health inequities. This study aimed to explore equity-oriented care and services from the perspectives of primary care registered nurses working in Nunavik (Northern Quebec, Canada) Inuit communities. We used a critical postcolonial perspective and an interpretive descriptive design. We conducted semi-structured interviews with ten participants and thematically analyzed the data collected. The results showed dynamic conceptualizations of equity-oriented care and services that shaped how participants see the northern colonial context, the healthcare accessibility, and the nursing care approach within Inuit communities. From these findings, we call for accountability measures like antiracist policies to promote transformational changes toward health equity.

Primary care perspectives on prescribing anti-obesity medication for adolescents.

Recent pediatric guidelines recommend clinicians offer anti-obesity medication (AOM) as an adjunct to intensive lifestyle intervention. To investigate pediatricians' perspectives about prescribing AOM, including barriers and facilitators. An investigator-developed survey was emailed to primary care pediatric physicians (n = 187) and advanced practice providers (n = 190) within an academic-affiliated network. The survey evaluated how willing clinicians were to prescribe AOM and their agreement with 25 statements about barriers and facilitators. Three vignettes explored AOM decision-making. Multinomial logistic regression was used to determine relative risk ratios for willingness to prescribe by agreement with each statement. Among 74 respondents (20% response rate), 24% were willing, 42% uncertain and 34% unwilling to prescribe. Most (64%) agreed that AOM should be managed only by specialists. Willingness to prescribe was associated with clinician motivation and belief in guideline practicality and applicability. Unwillingness was associated with beliefs that patients would not continue AOM long enough for benefit and that there was insufficient time or resources to implement. In vignettes, 52% were willing to prescribe AOM for a patient with severe obesity and metabolic complications, versus 11% for a patient with obesity and possible disordered eating. Willingness to prescribe AOM was low and was associated with perceived practicality and appropriateness for patients.

Cost-effectiveness of a multicomponent-adherence intervention in fracture liaison services

ABSTRACT Background This study aims to assess the lifetime cost-effectiveness of a multi-component adherence intervention (MCAI), including a patient decision aid and motivational interviewing, compared to usual care in patients with a recent fracture attending fracture liaison services (FLS) and eligible for anti-osteoporosis medication (AOM). Research design and methods Data on AOM initiation and one-year persistence were collected from a quasi-experimental study conducted between 2019 and 2023 in two Dutch FLS centers. An individual level, state-transition Markov model was used to simulate lifetime costs and quality-adjusted life years (QALYs) with a societal perspective of MCAI vs usual care. One-way and probabilistic sensitivity analyses were conducted including variation in additional FLS and MCAI costs (no MCAI cost in baseline). Results MCAI was associated with gain in QALYs (0.0012) and reduction in costs (-€16) and is therefore dominant. At the Dutch willingness-to-pay threshold of €50,000/QALY, MCAI remained cost-effective when increasing costs of the FLS visit or the yearly maintenance cost for MCAI up to +€60. Probabilistic sensitivity analysis demonstrated MCAI to be dominant in 54% of the simulations and cost-effective in 87% with a threshold of €50,000/QALY. Conclusions A MCAI implemented in FLS centers may lead to cost-effective allocation of resources in FLS care, depending on extra costs.

Infected patent urachus in a young male: Primary care perspective

Abdominal pain is a common presenting complaint in a primary care setting. Umbilical discharge secondary to umbilical anomalies is usually diagnosed in children and is rare in adults. This case highlights the possibilities of umbilical anomalies as causes of undifferentiated abdominal pain and umbilical discharge in adults. A 24-year-old male presented with a recurrent history of undifferentiated lower abdominal pain and umbilical discharge but was not diagnosed appropriately, leading to multiple visits to general practitioners and emergency departments for four years. An abdominal ultrasound was done, which revealed a hypoechoic tubular structure at the midline of the abdomen. A diagnosis of patent urachus was made and he was then referred to the surgical team for excision of the patent urachus.

Information needs of women with BRCA mutations regarding cancer risk management and decision-making

PurposeProviding women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making. MethodsThis is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999). ResultsThree main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location. ConclusionThis study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.

Exploring personal aptitudes and personality traits that, together with social determinants, shape health behaviors and conduct: a thematic analysis based on the Capability, Opportunity, Motivation and Behavior (COM-B) change system.

Effective implementation of strategies to promote health and prevent noncommunicable illnesses requires a profound understanding of the interaction between the individual and society. This study brings to health research the consideration of psychosocial factors that influence the maintenance and change of health behaviors and conduct. From a primary care perspective, it is crucial to propose a biopsychosocial approach for the development of health promotion and self-care programs that embrace personal aptitudes as a relevant individual aspect. To explore experiences related to personal aptitudes and personality traits that influence health behaviors and conduct, taking into account the social determinants of health, through a thematic analysis based on the capability-opportunity-motivation and behavior (COM-B) system. This qualitative research is carried out from a descriptive phenomenological perspective, based on 17 focus groups in which 156 people participated. Inductive and deductive analysis techniques were used following Lincoln and Guba's criteria of methodological rigor. In addition to 7 different triangulations of analysts, 6 main categories were identified based on the COM-B system: psychological capacity, physical capacity, physical opportunity, social opportunity, reflective motivation, and automatic motivation. The importance of considering these factors to promote healthy behaviors was stressed. This study examined how personal experiences related personal aptitudes and personality traits influence health behaviors and conduct in Spain. It was found that personality traits such as health literacy, self-efficacy, activation, and self-determination can influence the adoption of healthy behaviors. Likewise, the need for control, overthinking, and ambivalence made it impossible. Furthermore, social determinants of health and interpersonal relationships also play an important role. ClinicalTrials.gov, NCT04386135. Registered on April 30, 2020.

Basic Conditions for Support of Young Carers in School: A Secondary Analysis of the Perspectives of Young Carers, Parents, Teachers, and Counselors.

Young carers face a variety of challenges at school. While schools can be vital places of support, the assistance they receive at school often seems selective and fails to consider the unique life situations of individual students. This paper examines the perspective of multiple actors in the student's school environment and explores how schools can develop comprehensive, sustainable support systems for young carers-systems that consider and involve as many actors as possible in the student's school environment. In a secondary analysis of two interview studies, we analyzed how young carers as well as their parents, teachers, and school counsellors perceived the school support the carers received. We then developed an integrated model that incorporates these differing perspectives. The model offers an approach for implementing low-threshold support for young carers within existing school structures in relation to their family situation and outlines conditions that can support both recognized and "invisible" young carers, as well as other students.

Barriers and enablers to the implementation and sustainability of short-stay arthroplasty programs for elective primary total hip and knee replacement: A systematic review with qualitative evidence synthesis.

We aimed to systematically review contemporary evidence on the barriers and enablers to implementing and sustaining short-stay arthroplasty programs for elective primary total hip and knee replacement from the perspectives of patients, health professionals, carers, healthcare administrators, funders and policymakers and to map the findings to the Theoretical Domains Framework (TDF). Medline, Cumulative Index to Nursing and Allied Health Literature, EMBASE, and the Cochrane Central Register of Controlled Trials were searched (up to 19 August 2023). Primary qualitative or mixed-methods studies reporting on perspectives relating to the review aims that utilised a short-stay programme were eligible for inclusion. Study quality was assessed using the qualitative critical appraisal tool from the Joanna Briggs Institute. Data were analysed inductively. The final themes were mapped to the TDF. The confidence in the findings was assessed using GRADE CERQual. Fifteen studies were included. Twelve barrier themes and twelve enabler themes were identified. Three themes were graded with high confidence, 10 were graded with moderate confidence, three were graded with low confidence, and eight were graded with very low confidence. The most pertinent domains that the themes were mapped to for patients were beliefs about capabilities, reinforcement, and the environmental context and resources. Health professionals identified knowledge, environmental context and resources as important domains. Two domains were identified for carers: (1) social/professional role and identity and (2) memory, attention, and decision processes. We identified key barrier and enabler themes linked to the TDF that can be used to guide implementation initiatives and promote the sustainability of short-stay arthroplasty programs.

PCR151 Understanding the Patient Perspectives of Post-Discharge Care and Impact of Treatment in the First Year Post-Acute Myocardial Infarction

PCR151 Understanding the Patient Perspectives of Post-Discharge Care and Impact of Treatment in the First Year Post-Acute Myocardial Infarction

Support to ‘non-clients’: care managers’ role in direct and indirect carer support

ABSTRACT Social service provision in Europe has increasingly incorporated informal carers. Consequently, these carers are now included within the scope of all social workers, including care managers. Most support for carers is indirect support, where opportunities for respite are channelled through the care receiver’s needs assessment. This approach highlights the unique role of care managers providing carer support as they balance their public task directed towards clients with the concurrent policy-driven expectation to support carers. The aim of this article is to explore how care managers, as street-level bureaucrats, ‘make’ carer support policy on the ground. Using systematic text condensation of 10 qualitative interviews with care managers in Sweden, we present three themes to understand care managers’ experiences. Care managers work ‘Hand-in-hand’ and ‘hands on’ with carers, carers are within, yet outside one’s scope of work, and there are possibilities and practices towards a carer perspective. Following Lipsky’s dictum that street-level bureaucrats’ actions effectively ‘become’ the public policy they carry out, our results highlight care managers’ possibilities and challenges in shaping what direct and indirect carer support looks like on the ground.