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Introduction: The development of high-quality stated preference (SP) surveys requires a rigorous design process involving engagement with representatives from the target population. However, while transparency in the reporting of the development of SP surveys is encouraged, few studies report on this process and the outcomes. Recommended stages of instrument development includes both steps for stakeholder/end-user engagement and pretesting. Pretesting typically involves interviews, often across multiple waves, with improvements made at each wave; pretesting is therefore resource intensive. The aims of this paper are to report on the outcomes of collaboration with a Lewy body dementia research advisory group during the design phase of a SP survey. We also evaluate an alternative approach to instrument development, necessitated by a resource constrained context. Method: The approach involved conducting the stages of end-user engagement and pretesting together during a public involvement event. A hybrid approach involving a focus group with breakout interviews was employed. Feedback from contributors informed the evolution of the survey instrument. Results: Changes to the survey instrument were organized into four categories: attribute modifications; choice task presentation and understanding; information presentation, clarity and content; and best-best scaling presentation. The hybrid approach facilitated group brainstorming while still allowing the researcher to assess the feasibility of choice tasks in an interview setting. However, greater individual exploration and the opportunity to trial iterative improvements across waves was not feasible with this approach. Discussion: Involvement of the research advisory group resulted in a more person-centered survey design. In a context constrained by time and budget, and with consideration of the capacity and vulnerability of the target population, the approach taken was a feasible and pragmatic mechanism for improving the design of a SP survey.
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BACKGROUND/AIMS: The goal of health research is to improve patients care and outcomes. Thus, it is essential that research addresses questions that are important to patients and clinicians. The aim of this study was to develop a list of priorities for glaucoma research involving stakeholders from different countries in Europe. METHODS: We used a three-phase method, including a two-round electronic Delphi survey and a workshop. The clinician and patient electronic surveys were conducted in parallel and independently. For phase I, the survey was distributed to patients from 27 European countries in 6 different languages, and to European Glaucoma Society members, ophthalmologists with expertise in glaucoma care, asking to name up to five research priorities. During phase II, participants were asked to rank the questions identified in phase I using a Likert scale. Phase III was a 1 day workshop with patients and clinicians. The purpose was to make decisions about the 10 most important research priorities using the top 20 priorities identified by patients and clinicians. RESULTS: In phase I, 308 patients and 150 clinicians were involved. In phase II, the highest-ranking priority for both patients and clinicians was 'treatments to restore vision'. In phase III, eight patients and four clinicians were involved. The top three priorities were 'treatments to stop sight loss', 'treatments to restore vision' and 'improved detection of worsening glaucoma'. CONCLUSION: We have developed a list of priorities for glaucoma research involving clinicians and patients from different European countries that will help guide research efforts and investment.
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BACKGROUND: Although prescribing and deprescribing practices in older people have been the subject of much research generally, there are limited data in older people at the end of life. This highlights the need for research to determine prescribing and deprescribing patterns, as a first step to facilitate guideline development for medicines optimisation in this vulnerable population. AIMS: To examine prescribing and deprescribing patterns in older people at the end of life and to determine the prevalence of potentially inappropriate medication use. DESIGN: A longitudinal, retrospective cohort study where medical records of eligible participants were reviewed, and data extracted. Medication appropriateness was assessed using two sets of consensus-based criteria; the STOPPFrail criteria and criteria developed by Morin et al. SETTING/PARTICIPANTS: Decedents aged 65 years and older admitted continuously for at least 14 days before death to three inpatient hospice units across Northern Ireland, who died between 1st January and 31st December 2018, and who had a known diagnosis, known cause of death and prescription data. Unexpected/sudden deaths were excluded. RESULTS: Polypharmacy was reported to be continued until death in 96.2% of 106 decedents (mean age of 75.6 years). Most patients received at least one potentially inappropriate medication at the end of life according to the STOPPFrail and the criteria developed by Morin et al. (57.5 and 69.8% respectively). Limited prevalence of proactive deprescribing interventions was observed. CONCLUSIONS: In the absence of systematic rationalisation of drug treatments, a substantial proportion of older patients continued to receive potentially inappropriate medication until death.
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Desprescrições , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Idoso , Prescrição Inadequada/prevenção & controle , Estudos Retrospectivos , Lista de Medicamentos Potencialmente Inapropriados , MorteRESUMO
OBJECTIVES: This study aimed to investigate healthcare professionals' barriers to and enablers of deprescribing in older hospice patients at the end of life and prioritise relevant theoretical domains for behaviour change to be incorporated into future interventions to facilitate deprescribing. METHODS: Twenty doctors, nurses and pharmacists from four hospices in Northern Ireland participated in qualitative semistructured interviews using Theoretical Domains Framework (TDF)-based topic guides. Data were recorded, transcribed verbatim and analysed inductively using thematic analysis. Deprescribing determinants were mapped to the TDF enabling the prioritisation of domains for behaviour change. KEY FINDINGS: Four prioritised TDF domains represented key barriers to deprescribing implementation; lack of formal documentation of deprescribing outcomes (Behavioural regulation), challenges in communication with patients and families (Skills), lack of implementation of deprescribing tools in practice (Environmental context/resources) and patient and caregiver perceptions of medication (Social influences). Access to information was identified as a key enabler (Environmental context/resources). Perceived risks versus benefits of deprescribing were identified as a key barrier or enabler (Beliefs about consequences). CONCLUSIONS: This study highlights that further guidance on deprescribing in the context of end-of-life is required to address the growing problems of inappropriate prescribing, Guidance should consider factors such as the adoption of deprescribing tools, monitoring and documentation of deprescribing outcomes and how best to discuss prognostic uncertainty.
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Desprescrições , Cuidados Paliativos na Terminalidade da Vida , Humanos , Idoso , Atitude do Pessoal de Saúde , Pessoal de Saúde , Pesquisa Qualitativa , MorteRESUMO
BACKGROUND: The COVID-19 pandemic has led to the rapid and reactive deployment of remote consulting in UK general practice. The delivery of acute and chronic asthma care has been affected. Extended Normalisation Process Theory (eNPT) provides a framework for evaluating the implementation of new complex interventions in routine practice, including examination of how context-intervention interactions affect implementation. AIM: To explore the implementation of remote asthma consulting in UK general practice in response to the COVID-19 pandemic. DESIGN & SETTING: Mixed-methods evaluation, which was informed by eNPT, in general practice in Northern Ireland. METHOD: Data were collected from a range of healthcare professionals who provide asthma care using online questionnaires, interviews, and multidisciplinary focus groups. Analysis was informed by eNPT. RESULTS: Ten themes were identified to describe and explain the contribution of general practice staff to implementation of remote asthma consulting. Staff identified novel alternatives to in-person review. Having a practice champion to drive implementation forward, and engage other practice staff, was important. Patient, staff, and healthcare system-contextual factors influencing implementation were identified including access to, understanding of, and willingness to use the technology required for remote consulting. CONCLUSION: The experiences of frontline healthcare professionals in this study indicate that remote asthma consulting has potential benefits in terms of access and effectiveness when implementation integrates seamlessly with face-to-face care for those who want or need it. Work is required at practice and healthcare system levels to realise this potential, and ensure implementation does not exacerbate existing healthcare inequalities.
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BACKGROUND: Befriending is a popular way in which to intervene to combat loneliness and social isolation among older people. However, there is a need to improve our understanding about how these interventions work, for whom and in which contexts, to make the best use of the increasing investment in the provision and delivery of befriending services. METHODS: A realist evaluation was undertaken as it focuses on uncovering causal processes and interactions between mechanisms and contextual characteristics. Five case studies of befriending programmes in Northern Ireland were studied, reflecting variation in contextual variables, service user and provider characteristics. Data was collected via service documentation and semi-structured interviews (n = 46) with stakeholders involved in the delivery and receipt of befriending interventions. RESULTS: Eight initial programme theories were generated, which were 'tested' in the case study analysis to uncover context-mechanism-outcome relationships. Mechanisms identified included reciprocity, empathy, autonomy, and privacy which were triggered in different contexts to support the alleviation of loneliness and social isolation. Reciprocity was 'triggered' in contexts where service users and befrienders shared characteristics, the befriender was a volunteer and befriending took the form of physical companionship. Contexts characterised in terms of shared experiences between befriender and service user triggered empathy. Autonomy was triggered in contexts where befriending relationships were delivered long-term and did not focus on a pre-defined set of priorities. Privacy was triggered in contexts where service users had a cognitive/sensory impairment and received one-to-one delivery. CONCLUSION: This study improves understanding about how and why befriending interventions work. Findings indicate that services should be tailored to the needs of service users and take into consideration characteristics including mobility, impairments e.g. physical, sensory and/or cognitive, as well as the influence of service characteristics including payment for befrienders, fixed/long-term befriending relationship, one-to-one support and the impact of non-verbal communication via face-to-face delivery.
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Empatia/fisiologia , Amigos/psicologia , Solidão/psicologia , Isolamento Social/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Relações Interpessoais , Masculino , Irlanda do Norte/epidemiologia , Pesquisa Qualitativa , Apoio Social , VoluntáriosRESUMO
BACKGROUND: A proportion of women undergoing mastectomy for breast cancer choose to undergo breast reconstruction. Evidence suggests that women's preparedness for this surgery is low and that this may contribute to feelings of unmatched expectations and anxiety. There is substantial interest in decision-aids to remedy this. This study explores the incorporation of digitally rendered three-dimensional images into pre-operative counselling sessions as a means of enhancing patient preparedness. METHODS: A database of three-dimensional images was produced showing both optimal and sub-optimal aesthetic outcome, matched to participant on the basis of type of surgical reconstruction, body habitus, and skin tone. Women undergoing mastectomy for breast cancer followed by immediate reconstruction were targeted for inclusion. Participants interacted with image software during pre-operative counselling sessions by viewing, rotating, and zooming in/out to gain a more in-depth appreciation of post-operative aesthetic outcome. Semi-structured face-to-face interviews followed thereafter. Interviews were audio-recorded, transcribed, coded, and themes identified. RESULTS: Eight semi-structured interviews took place. The major emergent theme was 'increased preparedness' with subthemes including 'expectation management', 'software interaction', and 'enhanced realism'. There were no prohibitively negative emotions after interacting with images. Women reported gaining 'more of a perspective' and feeling 'more informed' after viewing images. They also valued the enhanced interactivity and better appreciation of reconstructed breast symmetry that viewing three-dimensional images offered when compared to viewing two-dimensional photographs. Finally, women also commented that three-dimensional images were more realistic. CONCLUSIONS: Results suggest that incorporation of three-dimensional images into pre-operative counselling sessions prior to breast reconstruction, is a fairly simple yet effective method of enhancing patient preparedness prior to surgery. Women particularly valued the ability to use the software to generate a more realistic idea of what to expect after their operation. Future work should focus on better understanding any quantifiable benefit from incorporating three-dimensional images routinely into pre-operative decision-making.
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Neoplasias da Mama , Mamoplastia , Neoplasias da Mama/cirurgia , Aconselhamento , Feminino , Humanos , Imageamento Tridimensional , MastectomiaRESUMO
BACKGROUND: Ongoing assessment of psychological reaction to illness in palliative and end of life care settings is recommended, yet validated tools are not routinely used in clinical practice. The Distress Thermometer is a short screening tool developed for use in oncology, to detect individuals who would benefit from further psychological assessment. However the optimal cut-off to detect indicative psychological morbidity in patients with advanced cancer receiving specialist palliative care is unclear. AIM: To provide the first validation of the Distress Thermometer in an advanced cancer population receiving specialist palliative care in a UK hospice setting. DESIGN: Receiver Operating Characteristics analysis was used to compare the sensitivity and specificity of cut-offs indicative of psychological morbidity on the Distress Thermometer in comparison to the Hospital Anxiety and Depression Scale. SETTING/PARTICIPANTS: Data were derived from 202 patients with advanced cancer who were approached on admission to inpatient or day hospice care, with 139 patients providing complete data on both measures. RESULTS: The area under the curve was optimal using a Distress Thermometer cut-off score of ⩾6 for total distress and for anxiety, and a cut-off score of ⩾4 optimal when screening for depression. CONCLUSIONS: The Distress Thermometer is a valid, accurate screening tool to be used in advanced cancer but with caution in relation to the lack of specificity. With little variation between the area under the curve scores, arguably a Distress Thermometer cut-off score of ⩾5 is most appropriate in screening for all types of psychological morbidity if sensitivity is to be prioritised.
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Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Humanos , Cuidados Paliativos , Psicometria , Estresse Psicológico/diagnóstico , Inquéritos e Questionários , TermômetrosRESUMO
BACKGROUND: Loneliness and social isolation are growing public health concerns in our ageing society. Whilst these experiences occur across the life span, 50% of individuals aged over 60 are at risk of social isolation and one-third will experience some degree of loneliness later in life. The aim of this scoping review was to describe the range of interventions to reduce loneliness and social isolation among older adults that have been evaluated; in terms of intervention conceptualisation, categorisation, and components. METHODS: Three electronic databases (CINAHL, Embase and Medline) were systematically searched for relevant published reviews of interventions for loneliness and social isolation. Inclusion criteria were: review of any type, published in English, a target population of older people and reported data on the categorisation of loneliness and/or social isolation interventions. Data extracted included: categories of interventions and the reasoning underpinning this categorisation. The methodology framework proposed by Arskey and O'Malley and further developed by Levac, et al. was used to guide the scoping review process. RESULTS: A total of 33 reviews met the inclusion criteria, evaluating a range of interventions targeted at older people residing in the community or institutionalised settings. Authors of reviews included in this paper often used the same terms to categorise different intervention components and many did not provide a clear definition of these terms. There were inconsistent meanings attributed to intervention characteristics. Overall, interventions were commonly categorised on the basis of: 1) group or one-to-one delivery mode, 2) the goal of the intervention, and 3) the intervention type. Several authors replicated the categorisation system used in previous reviews. CONCLUSION: Many interventions have been developed to combat loneliness and social isolation among older people. The individuality of the experience of loneliness and isolation may cause difficulty in the delivery of standardised interventions. There is no one-size-fits-all approach to addressing loneliness or social isolation, and hence the need to tailor interventions to suit the needs of individuals, specific groups or the degree of loneliness experienced. Therefore, future research should be aimed at discerning what intervention works for whom, in what particular context and how.
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Promoção da Saúde , Solidão , Isolamento Social , Idoso , Humanos , Revisões Sistemáticas como AssuntoRESUMO
BACKGROUND: Constipation is a major problem for many older adults, more so for those who are receiving specialist palliative care. However, limited research reports the subjective experiences of constipation, despite evidenced differences between the healthcare professional and patient/carer perspective. AIM: The main aim of this study is to explore the experience of how constipation is assessed and managed within specialist palliative care from the patient, carer and healthcare professional perspective. DESIGN: Exploratory, qualitative design, utilising focus groups and interviews, and analysed using thematic analysis. SETTING/PARTICIPANTS: Six focus groups with 27 healthcare professionals and semi-structured interviews with 13 patients and 5 family caregivers in specialist palliative care units across three regions of the United Kingdom. RESULTS: Constipation impacted physically, psychologically and socially on patients and families; however, they felt staff relegated it on the list of importance. Lifestyle modifications implemented at home were not incorporated into their specialist palliative care plan within the hospice. Comparatively, healthcare professionals saw constipation solely as a physical symptom. Assessment focused on the physical elements of constipation, and management was pharmacologically driven. Healthcare professionals reported patient embarrassment as a barrier to communicating about bowel care, whereas patients wanted staff to initiate communication and discuss constipation openly. CONCLUSION: Assessment and management of constipation may not yet reflect the holistic palliative care model. A focus on the pharmacological management may result in lifestyle modifications being underutilised. Healthcare professionals also need to be open to initiate communication on bowel care and consider non-pharmacological approaches. It is important that patients and families are supported in self-care management, alongside standardised guidelines for practice and for healthcare professionals to facilitate this.
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Cuidadores , Laxantes , Idoso , Constipação Intestinal/terapia , Atenção à Saúde , Humanos , Laxantes/uso terapêutico , Cuidados Paliativos , Pesquisa Qualitativa , Reino UnidoRESUMO
Involving people with dementia in decision-making is widely accepted as a means of empowering them to lead more independent lives and have more meaningful roles in shaping their care. However, there is a need to conduct rigorous evaluations of empowerment-driven services and policies in order to develop a deeper understanding about how to optimise successful implementation. This paper presents the results of an evaluation of Dementia Northern Ireland, an organisation initiated and led by people with dementia. We used a realist evaluation approach that comprised interviews with 15 people with dementia, three staff and two board members, ethnographic observations, along with documentary analysis to identify 'what works, for whom, under what circumstances'. The analysis used realist logic to build up context-mechanism-outcome configurations. The Dementia Northern Ireland service model of empowerment revolved around the formation and maintenance of social groups of people with dementia. Facilitators, recruited and selected by people with dementia, supported six groups, consisting of one to four members with mild to moderate cognitive impairment. Facilitators helped expand empowerment groups, facilitate decision-making, awareness raising and consultation opportunities with group members. The 'Empowerment Groups' appeared to lead to the development of a shared social identity and a sense of collective strength as indicated by interview and observational data demonstrating an activist mentality among group members to challenge the stigma surrounding dementia. Group members also reported improved quality of life. Widespread implementation of the empowerment model has the potential to lead to reduced stigma and greater social inclusion, increased involvement of people with dementia as active co-producers of policy and service development, better services and support. This case study of Dementia Northern Ireland illustrates that there are boundaries and challenges to empowerment in terms of requiring additional support from staff without dementia. However, despite these challenges, empowerment-driven organisations can and should be committed to involving members in lead roles and key decision-making.
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Demência , Participação do Paciente , Antropologia Cultural , Humanos , Irlanda do Norte , Qualidade de Vida , Encaminhamento e ConsultaRESUMO
BACKGROUND: Constipation is a common symptom for patients receiving palliative care. Whilst international clinical guidelines are available on the clinical management of constipation for people with advanced cancer receiving specialist palliative care (SPC), the extent to which the guidelines are implemented in practice is unclear. This study aimed to examine clinical practices for the assessment and management of constipation for patients with advanced cancer within inpatient SPC settings. METHODS: A multi-site retrospective case-note review was conducted, consisting of 150 patient case-notes from three inpatient SPC units across the United Kingdom between August 2016 and May 2017. The variables selected for review were determined by the recommendations within the clinical guidelines. Descriptive statistics, cross tabulation, chi square, and bivariate correlations were used to examine clinical practices compared to policy guidelines for the assessment and management of constipation. Reporting was structured by the STROBE checklist for observational research (Additional File 2). RESULTS: A comprehensive assessment, including a full history and performing a physical exam, was recorded for 109 patients (73%), however, no standardised documentation was utilised. Assessment was nurse led, with variable involvement across sites of other members of the multidisciplinary team (MDT). Education on prevention was documented in 30 (20%) case-notes, and 53% recorded evidence of non-pharmacological intervention. Age, gender, and reason for admission did not impact on the likelihood of receiving a comprehensive assessment, education, or non-pharmacological intervention, however, significant differences were evident between sites. Pharmacological management was well developed and aligned to the guidelines however, 33% of patient case-notes recorded no information on the titration of laxatives. Twelve percent of patients experienced partial or complete bowel obstruction, and management strategies were variable. CONCLUSIONS: Constipation management is driven by a pharmacological approach, with little evidence of the implementation of preventative and non-pharmacological strategies. The nurse plays a key coordinating role in assessment; however, involvement and roles of the wider MDT varies. Accurate recording of care is essential when examining clinical practice and identifying areas for improvement. Further education is needed to equip HCPs with the knowledge and skills to ensure consistency in assessment and implementation of appropriate non-pharmacological/ preventative strategies.
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Constipação Intestinal/etiologia , Neoplasias/complicações , Cuidados Paliativos/métodos , Exame Físico/normas , Idoso , Idoso de 80 Anos ou mais , Constipação Intestinal/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Exame Físico/métodos , Exame Físico/tendências , Estudos Retrospectivos , Reino UnidoRESUMO
BACKGROUND: Empowerment for people with dementia (PWD) is not well defined within the research literature and we feel that this is an important area for development. It is important to seek, consult, and co-produce such a definition with PWD who are more actively involved in their communities post diagnosis (e.g. no longer the 'long goodbye'). This study seeks to combine academic literature review methods with participatory/co-production methods in order to address this gap. We feel this approach also adds to developing methodologies in the field of co-production and user involvement. METHODS: We use a unique approach toward a definition of empowerment for PWD. Phase 1 - A scoping review of medical/health, social care and social policy-based databases to identify any previous literature that may have defined empowerment exclusively for PWD. Based on this literature, we collected a list of terms relating to empowerment for PWD. Phase 2 - Using empowerment key terms set on cards formulated from Phase 1 across three co-production workshops, academic team members, and nine members of Dementia NI (an organisation founded and led by people with dementia) we reviewed the findings of this search and co-produced an agreed definition they felt best described empowerment for them. RESULTS: Phase 1 and 2 led to a definition of empowerment relevant to PWD. This shared understanding of empowerment was defined by PWD as 'A confidence building process whereby PWD are respected, have a voice and are heard, are involved in making decisions about their lives and have the opportunity to create change through access to appropriate resources'. CONCLUSIONS: The strength of this research lies in addressing the current confusion and arbitrariness of empowerment within the context of dementia. This coproduced work also provides evidence for not only the possibility, but also the added value of involving PWD in research in terms of unique insights afforded by their lived experiences.
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BACKGROUND: Constipation is an important issue for patients receiving palliative care within specialist palliative care settings. Questions and ambiguity, however, persist about international best practice and management. AIM: To synthesise the current evidence base on the assessment and management of constipation for palliative care patients within a specialist palliative care setting. DESIGN: This is a systematic review. DATA SOURCES: MEDLINE, Embase, CINAHL, Scopus and Cochrane databases were systematically searched in April 2017 for empirical studies, written in English, on the assessment and management of constipation in specialist palliative care settings, published between 2007 and 2017. Two researchers independently reviewed and critically appraised all studies, conducted data extraction, and undertook a thematic analysis. RESULTS: In total, 13 studies were included in the review comprising randomised trials ( n = 3), observational ( n = 4) and descriptive studies ( n = 6). Most research was conducted in specialist palliative care units, targeting either healthcare professionals or patients. The analysis highlighted a lack of standard definition of constipation, raising questions on the existence and comparability of baseline prevalence figures, the physical and psychological impact on patients, resource impact on staff and service, the subjective and objective methods of assessing constipation, and key aspects of constipation management, including a lack of focus on non-pharmacological management in this setting. CONCLUSION: The results of this review are being used to inform the development of an educational intervention targeting healthcare professionals. Gaps in the evidence base include lack of consistent definition of constipation, constipation prevention, non-pharmacological management, and the consideration of the management of constipation for the dying patient.
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Constipação Intestinal/terapia , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Administração dos Cuidados ao Paciente , HumanosRESUMO
OBJECTIVES: To characterise the use of the parenteral non-steroidal anti-inflammatory drug parecoxib when given by continuous subcutaneous infusion (CSCI) in a hospice population. Clinical experience suggests parecoxib CSCI may be of benefit in this population, but empirical evidence in relation to its safety and efficacy is lacking. METHODS: Retrospective chart review of patients with a cancer diagnosis receiving parecoxib CSCI from 2008 to 2013 at the Marie Curie Hospice, Belfast. Data were collected on treatment regime, tolerability and, in patients receiving at least 7 days treatment, baseline opioid dose and changes in pain scores or opioid rescue medication requirements. RESULTS: Parecoxib CSCI was initiated in 80 patients with a mean administration of 17.9 days (median 11, range 1-94). When used for a period of 7 days, there was a statistically significant reduction in pain scores (p=0.002) and in the number of rescue opioid doses required (p=0.001), but no statistically significant opioid-sparing effect (p=0.222). It was generally well tolerated, although gastrointestinal, renal adverse effects and local site irritation were reported. CONCLUSIONS: Parecoxib may have a valuable place in the management of cancer pain, especially towards the end of life when oral administration is no longer possible and CSCI administration is relied on. Further studies into the efficacy and tolerability of parecoxib CSCI are merited.
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Anti-Inflamatórios não Esteroides/uso terapêutico , Dor do Câncer/tratamento farmacológico , Isoxazóis/uso terapêutico , Manejo da Dor , Adulto , Idoso , Analgésicos Opioides/uso terapêutico , Feminino , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Infusões Subcutâneas , Masculino , Pessoa de Meia-Idade , Medição da Dor , Estudos Retrospectivos , Resultado do TratamentoRESUMO
CONTEXT: Effective pain management is a priority in the palliative care of advanced cancer patients. A body of research is emerging examining the factors that influence the management and experience of pain for such individuals. Identifying such factors should allow for the development of targeted interventions to improve pain management in the home while ultimately reducing unnecessary suffering for the patient. OBJECTIVES: The objective of this study was to identify relevant patient- and carer-related factors which have an effect on the pain experienced by advanced cancer patients cared for at home. METHOD: This is a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) statement guidelines. Studies were retrieved from the CINAHL, MEDLINE, and Web of Science and assessed independently by two reviewers with discrepancies assessed by a third before quality assessment and data extraction. A narrative synthesis was produced. RESULTS: Our search strategy produced 720 hits, of which 10 studies were retained for the final analysis. The factors identified included carer knowledge of cancer pain management, carer burden, carer and patient distress, pain rating disparity, patient well-being, patient depression, patient affective experience, patient body image, and satisfaction with palliative/medical care. All factors identified are supported by only some evidence with many having only been explored in single studies. CONCLUSIONS: There is a lack of quantitative research in the area of factors influencing the experience of pain for advanced cancer patients cared for at home. Such findings would be useful in developing theories of change that would underpin interventions aimed at improving pain outcomes for this population.
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Dor do Câncer/terapia , Serviços de Assistência Domiciliar , Manejo da Dor , Dor do Câncer/psicologia , Humanos , Manejo da Dor/psicologia , Cuidados Paliativos/psicologiaRESUMO
This review aims to synthesise the literature examining the psychosocial variables related to self-management (insulin adherence, non-adherence and administration, blood sugar monitoring, dietary behaviour, exercise behaviour) in adolescents with type 1 diabetes. A systematic search of three electronic databases was carried out and, after the application of eligibility criteria, 21 articles were assessed for quality prior to data extraction. Numerous psychological factors were found to be associated with self-management; however, correlations were typically small to moderate. The strongest associations were found between social anxiety and diet (among males); greater intrinsic motivation, conscientiousness and diet; and extraversion and exercise.
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Comportamento do Adolescente/psicologia , Diabetes Mellitus Tipo 1/psicologia , Autogestão/psicologia , Adolescente , Diabetes Mellitus Tipo 1/terapia , Comportamentos Relacionados com a Saúde , Humanos , Motivação , Cooperação do Paciente/psicologia , Psicologia do AdolescenteRESUMO
BACKGROUND: With an ageing population and increasing numbers of people with life-limiting illness, there is a growing demand for palliative day services. There is a need to measure and demonstrate the quality of these services, but there is currently little agreement on which aspects of care should be used to do this. The aim of the scoping review will be to map the extent, range and nature of the evidence around models of delivery, care domains and existing quality indicators used to evaluate palliative day services. METHODS: Electronic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Central Register of Controlled Trials) will be searched for evidence using consensus development methods; randomised or quasi-randomised controlled trials; mixed methods; and prospective, longitudinal or retrospective case-control studies to develop or test quality indicators for evaluating palliative care within non-residential settings, including day hospices and community or primary care settings. At least two researchers will independently conduct all searches, study selection and data abstraction procedures. Meta-analyses and statistical methods of synthesis are not planned as part of the review. Results will be reported using numerical counts, including number of indicators in each care domain and by using qualitative approach to describe important indicator characteristics. A conceptual model will also be developed to summarise the impact of different aspects of quality in a palliative day service context. Methodological quality relating to indicator development will be assessed using the Appraisal of Indicators through Research and Evaluation (AIRE) tool. Overall strength of evidence will be assessed using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system. Final decisions on quality assessment will be made via consensus between review authors. DISCUSSION: Identifying, developing and implementing evidence-based quality indicators is critical to the evaluation and continued improvement of palliative care. Review findings will be used to support clinicians and policymakers make decisions on which quality indicators are most appropriate for evaluating day services at the patient and service level, and to identify areas for further research.