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Due to population ageing and medical advances, people with advanced chronic diseases (ACD) live longer. Such patients are even more likely to face either temporary or permanent reduced functional reserve, which typically further increases their healthcare resource use and the burden of care on their caregiver(s). Accordingly, these patients and their caregiver(s) may benefit from integrated supportive care provided via digitally supported interventions. This approach may either maintain or improve their quality of life, increase their independence, and optimize the healthcare resource use from early stages. ADLIFE is an EU-funded project, aiming to improve the quality of life of older people with ACD by providing integrated personalized care via a digitally enabled toolbox. Indeed, the ADLIFE toolbox is a digital solution which provides patients, caregivers, and health professionals with digitally enabled, integrated, and personalized care, supporting clinical decisions, and encouraging independence and self-management. Here we present the protocol of the ADLIFE study, which is designed to provide robust scientific evidence on the assessment of the effectiveness, socio-economic, implementation, and technology acceptance aspects of the ADLIFE intervention compared to the current standard of care (SoC) when applied in real-life settings of seven different pilot sites across six countries. A quasi-experimental trial following a multicenter, non-randomized, non-concurrent, unblinded, and controlled design will be implemented. Patients in the intervention group will receive the ADLIFE intervention, while patients in the control group will receive SoC. The assessment of the ADLIFE intervention will be conducted using a mixed-methods approach.
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Cuidadores , Qualidade de Vida , Humanos , Idoso , Doença Crônica , Pessoal de Saúde , Fatores Socioeconômicos , Estudos Multicêntricos como AssuntoRESUMO
BACKGROUND: Long-term side-effects associated with different prostate cancer treatment approaches are common. Sexual challenges are the most frequently occurring issues and can result in increased psychological morbidity. It is recognized that barriers to communication can make initiating discussions around sexual concerns in routine practice difficult. Health care professionals need to routinely initiate conversations, effectively engage with patients, and assess needs in order to provide essential support. One proposed method that could support health care professionals to do this involves the use of prompts or structured frameworks to guide conversations. OBJECTIVE: This study aimed to assess feasibility, acceptability, and satisfaction with the tablet-based Engagement, Assessment, Support, and Sign-posting (EASSi) tool designed to facilitate and structure sexual well-being discussions in routine prostate cancer care. METHODS: Health care professionals (n=8) used the EASSi tool during 89 posttreatment appointments. Quantitative data were recorded based on program usage and surveys completed by health care professionals and patients. Qualitative data exploring perceptions on use of the tool were gathered using semistructured interviews with all health care professionals (n=8) and a sample of patients (n=10). RESULTS: Surveys were completed by health care professionals immediately following each appointment (n=89, 100%). Postal surveys were returned by 59 patients (66%). Health care professionals and patients reported that the tool helped facilitate discussions (81/89, 91% and 50/59, 85%, respectively) and that information provided was relevant (82/89, 92% and 50/59, 85%, respectively). The mean conversation duration was 6.01 minutes (SD 2.91). Qualitative synthesis identified the tool's ability to initiate and structure discussions, improve the "depth" of conversations, and normalize sexual concerns. CONCLUSIONS: The EASSi tool was appropriate and acceptable for use in practice and provided a flexible approach to facilitate routine brief conversations and deliver essential sexual well-being support. Further work will be conducted to evaluate the effectiveness of using the tablet-based tool in prostate cancer care settings.
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OBJECTIVES: To explore healthcare professional perceived barriers and facilitators to discussing sexual health and wellbeing with patients after diagnosis of chronic illness. METHODS: Five databases were searched and included data were synthesised using a meta-ethnographic approach. Confidence in findings was assessed using the GRADE-CERQual framework. Searches, extraction and quality assessment procedures were conducted independently by at least two authors. RESULTS: Concepts extracted from 30 included studies were used to develop a conceptual framework based on five overarching themes. These were [1] individual and societal attitudes to sex and sexual wellbeing [2], patient specific factors [3], organizational and professional factors [4], strategies to overcome barriers in practice and [5] perceived training needs. Healthcare professionals acknowledged the importance of discussing and providing support for sexual wellbeing needs, but recognized it is not routinely provided. CONCLUSIONS: While patient specific factors and organizational issues such as lack of time were frequently identified as barriers, intra-personal and social perceptions appear to have the strongest influence on healthcare professional perspectives. PRACTICE IMPLICATIONS: Brief education and tools to support healthcare professionals to have effective conversations with patients are required. These should address social barriers, normalise sexual issues, and support healthcare professionals to initiate discussions around sexual concerns.
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Atitude do Pessoal de Saúde , Barreiras de Comunicação , Comunicação , Pessoal de Saúde/psicologia , Comportamento Sexual , Saúde Sexual , Sexualidade/psicologia , Doença Crônica , Humanos , Qualidade de Vida , Sexualidade/fisiologia , Percepção SocialRESUMO
Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.
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Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias da Mama/tratamento farmacológico , Neoplasias Colorretais/tratamento farmacológico , Monitoramento de Medicamentos/métodos , Adulto , Idoso , Constipação Intestinal/induzido quimicamente , Constipação Intestinal/diagnóstico , Diarreia/induzido quimicamente , Diarreia/diagnóstico , Fadiga/induzido quimicamente , Fadiga/diagnóstico , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Náusea/induzido quimicamente , Náusea/diagnóstico , Aceitação pelo Paciente de Cuidados de Saúde , Reprodutibilidade dos Testes , Autorrelato , Transtornos de Sensação/induzido quimicamente , Transtornos de Sensação/diagnóstico , Inquéritos e Questionários , Vômito/induzido quimicamente , Vômito/diagnósticoRESUMO
PURPOSE: Living with a melanoma diagnosis can be challenging. We aimed to assess the feasibility, acceptability, and perceived value of a nurse-led intervention that utilised patient-reported outcome (PRO) measures to identify and address the supportive care needs of newly diagnosed patients with Stage I/II melanoma over the first 4 months post-diagnosis. METHODS: We conducted an exploratory, repeated-measures, single-arm, feasibility trial. One baseline (4 weeks post-diagnosis; T1) and one follow-up intervention session (4 weeks after wide local excision; T3) took place, two months apart. Patient survey data were collected monthly, at four assessment points (T1-T4), followed by exit interviews. RESULTS: A recruitment rate of 55% (10/18) was achieved. The skin cancer nurse specialist (CNS) performed 19 in-clinic patient assessments within 6 months. One patient missed their follow-up intervention session (90% retention rate). Three participants (30%) were lost to follow-up at T4. Patients endorsed the standardised use of easy-to-use PRO measures as a means to help them shortlist, report and prioritise their needs. The CNS viewed the intervention as a highly structured activity that allowed tailoring support priority needs. A sizeable reduction in information needs was found from T1 to T4 (Standardised Response Mean [SRM] change = -0.99; p < 0.05). From T1 to T2, significant reductions in psychological (SRM change = -1.18; p < 0.001), practical (SRM change = -0.67; p < 0.05) and sexuality needs (SRM change = -0.78; p < 0.05) were observed. CONCLUSIONS: The intervention appears to be feasible in clinical practice and acceptable to both patients with newly diagnosed melanoma and clinicians. Future research is warranted to test its effectiveness against standard care.
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Saúde Holística , Melanoma/diagnóstico , Melanoma/psicologia , Avaliação das Necessidades , Medidas de Resultados Relatados pelo Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Humanos , Masculino , Melanoma/enfermagem , Pessoa de Meia-Idade , Enfermagem Oncológica/métodos , Assistência Centrada no Paciente/métodos , Apoio Social , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To compare trends in the consumption of key foods over 10 years in the most deprived and least deprived quarters in north Glasgow, Scotland as defined by the Carstairs deprivation index for their postcode of domicile. DESIGN: Four random, cross-sectional, age- and gender-stratified population surveys carried out in 1986, 1989, 1992 and 1995. After assigning a deprivation score, food-frequency questionnaires from 2883 men and 3127 women were examined for compliance with dietary targets, examining trends by gender and within the most and least deprived quarters of the population. SETTING: North Glasgow, Scotland. SUBJECTS: Over 600 men and 600 women (aged 25-64 years) in each of the four survey years who completed a lifestyle questionnaire including a food frequency section. RESULTS: Increasing trends in the reported consumption of fruit and vegetables and oil-rich fish were observed over the 10-year period. However, the trend to increased fruit and vegetable consumption in the most deprived groups was not significant, and in 1995 only 8% of men and 12% of women in this group claimed consumption of these foods 4 or more times a day. In general, a higher percentage of those in the least deprived group met the targets for the key foods. CONCLUSIONS: Trends to increasing consumption of fruit and vegetables and fish were in the right direction, but the targets for consumption of certain key foods were met by a minority of the population. The progress towards the target for fruit and vegetables showed widening social gradients with time.