RESUMO
Liver transplantation (LT) for patients with non-resectable colorectal liver metastases (CRLM) offers improved survival and has gained increased interest internationally the last years. The aim of this study was to describe the health-related quality of life (HRQoL) in patients with non-resectable CRLM receiving LT and how baseline HRQoL factors affect overall survival (OS). HRQoL data in the SECA (SEcondary CAncer) LT cohort was compared to data obtained from colorectal cancer patients starting first-line chemotherapy for metastatic disease in a clinical trial and data from a Norwegian normal population. HRQoL data from the QLQ-C30 questionnaire used in the SECA LT study and the NORDIC- VII study were reported. The relationship between patient-reported symptom burden at baseline and OS was investigated. In the SECA study longitudinal HRQoL assessment was used to describe the time until definitive deterioration as well as mean values at different time points. Patients in the SECA and NORDIC-VII studies reported similar baseline HRQoL. The median time until definitive deterioration in the transplanted patients was estimated to 36 months. In the SECA study appetite loss and pain at baseline had negative impact on OS (25.3 versus 71.7 months, p = 0.002 and 39.7 versus 71.7 months, p = 0.038, respectively). Despite a relapse in most of the LT patients the Global Health Score (GHS) remained good. Pain, and especially appetite loss at time of transplantation is associated with poor outcome after LT.
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Neoplasias Colorretais , Neoplasias Hepáticas , Transplante de Fígado , Neoplasias Colorretais/tratamento farmacológico , Neoplasias Colorretais/cirurgia , Humanos , Neoplasias Hepáticas/tratamento farmacológico , Neoplasias Hepáticas/cirurgia , Recidiva Local de Neoplasia , Dor , Qualidade de VidaRESUMO
PURPOSE: Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specific criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. METHODS: A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specific criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. RESULTS: The search identified 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specific limitations and implications was higher in 2018 than in 2008, but there were no differences in the other selected PRO-specific criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included ≥ 300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. CONCLUSION: The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little difference in compliance with the PRO-specific criteria. The studies varied in terms of study design and PRO instruments used in both publication years.
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Neoplasias , Qualidade de Vida , Europa (Continente) , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Projetos de PesquisaRESUMO
BACKGROUND: Following an implementation plan based on dynamic dialogue between researchers and clinicians, this study implemented an evidence-based patient education program (tested in an RCT) into routine care at a clinical transplant center. The aim of this study was to investigate renal recipients' knowledge and self-efficacy during first year the after the intervention was provided in an everyday life setting. METHODS: The study has a longitudinal design. The sample consisted of 196 renal recipients. Measurement points were 5 days (baseline), 2 months (T1), 6 months (T2), and one-year post transplantation (T3). Outcome measures were post-transplant knowledge, self-efficacy, and self-perceived general health. RESULTS: No statistically significant changes were found from baseline to T1, T2, and T3. Participants' levels of knowledge and self-efficacy were high prior to the education program and did not change throughout the first year post transplantation. CONCLUSION: Renal recipients self-efficacy and insight in post-transplant aspects seem to be more robust when admitted to the hospital for transplantation compared to baseline observations in the RCT study. This may explain why the implemented educational intervention did not lead to the same positive increase in outcome measures as in the RCT. This study supports that replicating clinical interventions in real-life settings may provide different results compared to results from RCT's. In order to gain a complete picture of the impacts of an implemented intervention, it is vital also to evaluate results after implementing findings from RCT-studies into everyday practice.
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Falência Renal Crônica , Transplante de Rim , Educação de Pacientes como Assunto , Período Perioperatório , Qualidade de Vida , Autoeficácia , Adulto , Informação de Saúde ao Consumidor , Feminino , Letramento em Saúde , Humanos , Falência Renal Crônica/psicologia , Falência Renal Crônica/cirurgia , Transplante de Rim/educação , Transplante de Rim/psicologia , Estudos Longitudinais , Masculino , Período Perioperatório/educação , Período Perioperatório/psicologiaRESUMO
BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.
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Doença Crônica/terapia , Pessoal de Saúde/psicologia , Relações Médico-Paciente , Humanos , Pesquisa QualitativaRESUMO
OBJECTIVE: We conducted a randomized, controlled, noninferiority trial to investigate if intravenous, multimodal, patient-controlled analgesia (IV-PCA) could be noninferior to multimodal thoracic epidural analgesia (TEA) in patients undergoing open liver surgery. SUMMARY BACKGROUND DATA: The increasing use of minimally invasive techniques and fast track protocols have questioned the position of epidural analgesia as the optimal method of pain management after abdominal surgery. METHODS: Patients operated with open liver resection between February 2012 and February 2016 were randomly assigned to receive either IV-PCA enhanced with ketorolac/diclofenac (IV-PCA, n = 66) or TEA (n = 77) within an enhanced recovery after surgery protocol. Noninferiority would be declared if the mean pain score on the numeric rating scale (NRS) for postoperative days (PODs) 0 to 5 in the IV-PCA group was no worse than the mean pain score in the TEA group by a margin of <1 point on an 11-point scale (0-10). RESULTS: The primary endpoint, mean NRS pain score was 1.7 in the IV-PCA group and 1.6 in the TEA group, establishing noninferiority. Pain scores were lower in the TEA group on PODs 0 and 1, but higher or equal on PODs 2 and 5. Postoperative hospital stay was significantly shorter for patients in the IV-PCA group (74 vs 104âh, P < 0.001). The total opioid consumption during the first 3 days was significantly lower in the IV-PCA group. CONCLUSIONS: IV-PCA was noninferior to TEA for the treatment of postoperative pain in patients undergoing open liver resection.
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Analgesia Epidural , Analgesia Controlada pelo Paciente , Analgésicos Opioides/administração & dosagem , Anti-Inflamatórios não Esteroides/administração & dosagem , Hepatectomia/efeitos adversos , Dor Pós-Operatória/prevenção & controle , Analgesia Epidural/métodos , Analgesia Controlada pelo Paciente/métodos , Neoplasias Colorretais/patologia , Diclofenaco/administração & dosagem , Estudos de Equivalência como Asunto , Humanos , Infusões Intravenosas , Cetorolaco/administração & dosagem , Tempo de Internação , Neoplasias Hepáticas/secundário , Neoplasias Hepáticas/cirurgia , Estudos ProspectivosRESUMO
Annual assessment of adherence would strengthen long-term outcome assessments from registry data. The objective of this study was to evaluate tools suitable for annual routine capture of adherence data in renal transplant recipients. A single-centre open prospective trial included 295 renal transplant recipients on tacrolimus. Two-thirds of the patients were included 4 weeks post-transplant, randomized 1:1 to intensive or single-point adherence assessment in the early phase and 1-year post-transplant. One-third were included 1-year post-transplant during a cross-sectional investigation. Adherence was assessed using multiple methods: The "Basel Assessment of Adherence to Immunosuppressive Medication Scale" (BAASIS© ) questionnaire was used to assess self-reported adherence. The treating clinician scored patient's adherence and tacrolimus trough-concentration variability was calculated. In the analyses, the data from the different tools were dichotomized (adherent/nonadherent). The BAASIS© overall response rate was over 80%. Intensive BAASIS© assessment early after transplantation increased the chance of capturing a nonadherence event, but did not influence the 1-year adherence prevalence. The adherence tools generally captured different populations. Combining the tools, the nonadherence prevalence at 1 year was 38%. The different tools identified to a large degree different patients as nonadherent. Combining these tools is feasible for annual capture of adherence status.
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Coleta de Dados/métodos , Imunossupressores/administração & dosagem , Transplante de Rim , Adesão à Medicação/estatística & dados numéricos , Adulto , Idoso , Biópsia , Estudos Transversais , Esquema de Medicação , Feminino , Rejeição de Enxerto , Humanos , Falência Renal Crônica/tratamento farmacológico , Falência Renal Crônica/cirurgia , Masculino , Pessoa de Meia-Idade , Noruega , Estudos Prospectivos , Sistema de Registros , Fatores de Risco , Autorrelato , Inquéritos e Questionários , Transplantados , Resultado do TratamentoRESUMO
Aims: Non-adherence to medication is a key challenge in treatment of hypertensive patients. Directly Observed Therapy prior to ambulatory blood pressure measurement (DOT-HTN) is relatively new in hypertension research and knowledge about its use and patients' perception of such control is warranted. We aimed to investigate DOT-HTN in relation to blood pressure control, procedural safety and patients' perception. Methods and results: Twenty patients with uncontrolled hypertension (daytime systolic ambulatory blood pressure measurement (ABPM) ≥135 mm Hg) were randomized to intervention with DOT-HTN and a visual analogue scale (VAS) assessment if they found DOT-HTN problematic (10 cm = very problematic), or to standard ABPM. They were followed for 2-4 weeks. There were no differences in baseline characteristics. Despite no difference in daytime systolic ABPM (p = 0.67) two patients were suggested to be non-adherent after DOT-HTN with reductions in daytime systolic ABPM of 18 and 22 mm Hg, respectively. No post DOT-HTN adverse reactions were reported. VAS assessment indicated that the patients had no problem being controlled (VAS median 0.30 cm (0.0-2.6)), however interesting comments and observed behaviour questioned the reliability of the patient-reported VAS in 38% of patients. Conclusions: Two of eight patients seemed to be non-adherent after DOT-HTN. Descriptive findings suggested reluctance towards control with DOT-HTN not captured by the VAS assessment. No DOT-related medical adverse-effects were reported.
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Anti-Hipertensivos/uso terapêutico , Monitorização Ambulatorial da Pressão Arterial , Terapia Diretamente Observada , Hipertensão/fisiopatologia , Adulto , Pressão Sanguínea , Ritmo Circadiano , Feminino , Humanos , Hipertensão/tratamento farmacológico , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Percepção , Resultado do TratamentoRESUMO
OBJECTIVE: To perform the first randomized controlled trial to compare laparoscopic and open liver resection. SUMMARY BACKGROUND DATA: Laparoscopic liver resection is increasingly used for the surgical treatment of liver tumors. However, high-level evidence to conclude that laparoscopic liver resection is superior to open liver resection is lacking. METHODS: Explanatory, assessor-blinded, single center, randomized superiority trial recruiting patients from Oslo University Hospital, Oslo, Norway from February 2012 to January 2016. A total of 280 patients with resectable liver metastases from colorectal cancer were randomly assigned to undergo laparoscopic (n = 133) or open (n = 147) parenchyma-sparing liver resection. The primary outcome was postoperative complications within 30 days (Accordion grade 2 or higher). Secondary outcomes included cost-effectiveness, postoperative hospital stay, blood loss, operation time, and resection margins. RESULTS: The postoperative complication rate was 19% in the laparoscopic-surgery group and 31% in the open-surgery group (12 percentage points difference [95% confidence interval 1.67-21.8; P = 0.021]). The postoperative hospital stay was shorter for laparoscopic surgery (53 vs 96 hours, P < 0.001), whereas there were no differences in blood loss, operation time, and resection margins. Mortality at 90 days did not differ significantly from the laparoscopic group (0 patients) to the open group (1 patient). In a 4-month perspective, the costs were equal, whereas patients in the laparoscopic-surgery group gained 0.011 quality-adjusted life years compared to patients in the open-surgery group (P = 0.001). CONCLUSIONS: In patients undergoing parenchyma-sparing liver resection for colorectal metastases, laparoscopic surgery was associated with significantly less postoperative complications compared to open surgery. Laparoscopic resection was cost-effective compared to open resection with a 67% probability. The rate of free resection margins was the same in both groups. Our results support the continued implementation of laparoscopic liver resection.
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Neoplasias Colorretais/patologia , Hepatectomia/métodos , Laparoscopia , Neoplasias Hepáticas/secundário , Neoplasias Hepáticas/cirurgia , Complicações Pós-Operatórias/prevenção & controle , Idoso , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Complicações Pós-Operatórias/epidemiologia , Método Simples-Cego , Resultado do TratamentoRESUMO
BACKGROUND: The wide use of healthy persons as kidney donors calls for awareness of risks associated with donation. Live kidney donation may impair quality of life (QOL) and result in fatigue. Long-term data on these issues are generally lacking in the donor population. Thus we aimed to investigate long-term self-reported health outcomes in a nationwide donor cohort. METHODS: We assessed self-reported QOL, fatigue and psychosocial issues after donation in 217 donors representing 63 % of those who donated 8-12 years ago. QOL was measured using the generic Short Form-36 Health Survey (SF-36), fatigue using the Multidimensional Fatigue Inventory (MFI) and psychosocial issues using donor specific questions. For each of the 8 domains of SF-36 and the 5 domains of MFI, we performed generalized linear regression. RESULTS: Donors scored high on QOL with mean scores between 63.9 and 91.4 (scale 1-100) for the 8 subscales. Recognition from family and friends was associated with higher QOL scores in four domains. There were no significant gender differences. Fatigue scores were generally low. Females generally scored higher than males on all five dimensions of fatigue, although significantly only on two. Recipient still alive was associated with lower scores on mental fatigue. Regretting donors scored higher than average on all domains of fatigue. Recipient death, worries about own health and worsened relationship with the recipient influenced willingness to donate in retrospect. Donor age did not affect long-term health outcomes. CONCLUSIONS: Eight till 12 years after donation QOL scores were generally high and improved with recogniton from family and friends. Fatigue was independent of donor age and more pronounced in females and in those who regretted donation.
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Fadiga/etiologia , Transplante de Rim , Doadores Vivos/psicologia , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Ansiedade/etiologia , Emoções , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Relações Interpessoais , Masculino , Fadiga Mental/etiologia , Pessoa de Meia-Idade , Autorrelato , Fatores Sexuais , Razão de Masculinidade , Percepção Social , Fatores de Tempo , Transplantados/psicologiaRESUMO
AIM: To compare nursing intensity and nurse staffing costs for liver transplant (LTx) vs. kidney transplant (KTx) patients through the use of the RAFAELA system (the OPCq instrument). BACKGROUND: High-quality patient care correlates with the correct allocation of nursing staff. Valid systems for obtaining data on nursing intensity, in relation to actual patient care needs, are needed to ensure correct staffing. METHODS: A prospective, comparative study of 85 liver and 85 kidney transplant patients. Nursing intensity was calculated using the Oulu Patient Classification (OPCq) instrument. The cost per nursing intensity point was calculated by dividing annual total nursing wage costs with annual total nursing intensity points. RESULTS: The results showed significantly higher nursing intensity per day for liver transplant patients compared to kidney transplant patients. The length of stay was the most important variable in relation to nursing intensity points per day. CONCLUSIONS: The study demonstrated differences in nursing intensity and nurse staffing costs between the two patient groups. IMPLICATIONS FOR NURSING MANAGEMENT: When defending nurse staffing decisions, it is essential that nurse managers have evidence-based knowledge of nursing intensity and nurse staffing costs.
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Transplante de Rim/enfermagem , Transplante de Fígado/enfermagem , Enfermeiras e Enfermeiros/provisão & distribuição , Admissão e Escalonamento de Pessoal/economia , Adulto , Feminino , Humanos , Transplante de Rim/economia , Transplante de Fígado/economia , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/normas , Satisfação do Paciente , Técnicas de Planejamento , Estudos Prospectivos , Alocação de Recursos/métodos , Carga de Trabalho/psicologia , Carga de Trabalho/normasRESUMO
The RAFAELA system was developed in Finland during the 1990s to help with the systematic and daily measurement of nursing intensity (NI) and allocation of nursing staff. The system has now been rolled out across almost all hospitals in Finland, and implementation has started elsewhere in Europe and Asia. This article describes the system, which aims to uphold staffing levels in accordance with patients' care needs, and its structure, which consists of three parts: the Oulu Patient Classification instrument; registration of available nursing resources; and the Professional Assessment of Optimal Nursing Care Intensity Level method, as an alternative to classical time studies. The article also highlights the benefits of using a systematic measurement of NI.
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Implementação de Plano de Saúde/métodos , Implementação de Plano de Saúde/organização & administração , Recursos Humanos de Enfermagem Hospitalar/organização & administração , Admissão e Escalonamento de Pessoal/organização & administração , Medicina Estatal/organização & administração , Carga de Trabalho/classificação , Carga de Trabalho/estatística & dados numéricos , Benchmarking/métodos , Finlândia , Humanos , Cuidados de Enfermagem/organização & administração , Recursos Humanos de Enfermagem Hospitalar/estatística & dados numéricos , Objetivos Organizacionais , Alocação de Recursos/normas , Reino UnidoRESUMO
OBJECTIVE: To investigate health literacy (HL) and digital health literacy (eHL) among patients hospitalised in surgical and medical wards using a cluster analysis approach. DESIGN: Cross-sectional study using Ward's hierarchical clustering method to measure cluster adequacy by evaluating distances between cluster centroids (a measure of cohesion). Different distances produced different cluster solutions. SETTING AND PARTICIPANTS: The study was conducted at a Norwegian university hospital. A total of 260 hospitalised patients were enrolled between 24 May and 6 June 2021. DATA COLLECTION: All data were collected by self-reported questionnaires. Data on HL and eHL were collected by the Health Literacy Questionnaire (HLQ) and the eHealth Literacy Questionnaire (eHLQ). We also collected data on background characteristics, health status and patient diagnosis. RESULTS: We found six HLQ clusters to be the best solution of the sample, identifying substantial diversity in HL strengths and challenges. Two clusters, representing 21% of the total sample, reported the lowest HLQ scores in eight of nine HLQ domains. Compared with the other clusters, these two contained the highest number of women, as well as the patients with the highest mean age, a low level of education and the lowest proportion of being employed. One of these clusters also represented patients with the lowest health status score. We identified six eHL clusters, two of which represented 31% of the total sample with the lowest eHLQ scores in five of seven eHLQ domains, with background characteristics comparable to patients in the low-scoring HLQ clusters. CONCLUSIONS: This study provides new, nuanced knowledge about HL and eHL profiles in different clusters of patients hospitalised in surgical and medical wards. With such data, healthcare professionals can take into account vulnerable patients' HL needs and tailor information and communication accordingly.
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Letramento em Saúde , Hospitalização , Humanos , Letramento em Saúde/estatística & dados numéricos , Feminino , Estudos Transversais , Masculino , Pessoa de Meia-Idade , Noruega , Idoso , Adulto , Inquéritos e Questionários , Análise por Conglomerados , Hospitalização/estatística & dados numéricos , TelemedicinaRESUMO
OBJECTIVE: This study aimed to evaluate the effect of a new health communication intervention focusing on knowledge management skills on health literacy and medication adherence during the first year following kidney transplantation. METHODS: We randomized 195 patients during 2020-2021, to either intervention- or control group. Questionnaires were completed at baseline and at 12 months post-transplantation with a 12-month response rate of 84%. Health literacy was measured by the multidimensional Health Literacy Questionnaire (HLQ) instrument. Medication adherence was measured by the self-reported questionnaire (BAASIS©). RESULTS: Results showed that the intervention group had a significant increase in 2 HLQ domains compared to the control group capturing the "ability to appraise health information" Domain 5, (p-value = 0.002) and the "ability to navigate the healthcare system" Domain 7, (p-value <0.04). The effect sizes of SRM were 0.49 (Domain 5) and 0.33 (Domain 7). Medication adherence was comparable in the groups at any measure points. CONCLUSIONS: This study contributes to important knowledge about how a health communication intervention focusing on knowledge translation using motivational interviewing techniques positively strengthens health literacy in kidney transplant recipients. PRACTICAL IMPLICATIONS: Current patient education practice may benefit from focusing on knowledge translation in combination with motivational interview technique.
Assuntos
Comunicação em Saúde , Letramento em Saúde , Transplante de Rim , Humanos , Projetos de Pesquisa , Inquéritos e Questionários , Adesão à MedicaçãoRESUMO
OBJECTIVE: To compare the effect of motivational interviewing (MI) and tailored health literacy (HL) follow-up with usual care on hospitalization, costs, HL, self-management, Quality of life (QOL), and psychological stress in people with chronic obstructive pulmonary disease (COPD). METHODS: A RCT was undertaken in Norway between March 2018-December 2020 (n = 127). The control group (CG, n = 63) received usual care. The intervention group (IG, n = 64) received tailored HL follow-up from MI-trained COPD nurses with home visits for eight weeks and phone calls for four months after hospitalization. Primary outcomes were hospitalization at eight weeks, six months, and one year from baseline. The trial was registered with ClinicalTrials.gov (NCT03216603) and analysed per protocol. RESULTS: Compared with the IG, the CG had 2.8 higher odds (95% CI [1.3 to 5.8]) of hospitalization and higher hospital health costs (MD= -6230, 95% CI [-6510 to -5951]) and lower QALYs (MD=0.1, 95% CI [0.10 to 0.11]) that gives an ICER = - 62,300. The IG reported higher QOL, self-management, and HL (p = 0.02- to <0.01). CONCLUSION: MI-trained COPD nurses using tailored HL follow-up is cost-effective, reduces hospitalization, and increases QOL, HL, and self-care in COPD. PRACTICE IMPLICATION: Tailored HL follow-up is beneficial for individuals with COPD and the healthcare system.
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Letramento em Saúde , Doença Pulmonar Obstrutiva Crônica , Autogestão , Humanos , Qualidade de Vida , Hospitalização , Custos de Cuidados de Saúde , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Pulmonar Obstrutiva Crônica/psicologiaRESUMO
OBJECTIVES: Health literacy (HL) related to musculoskeletal disorders (MSDs) in adolescents is a field with limited previous evidence. This study aimed to review and synthesise studies on MSDs and HL as well as various dimensions of HL in adolescents. DESIGN: Scoping review in accordance with Arksey and O'Malleys framework and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. SEARCH STRATEGY: The search strategy was performed in the following databases in November 2021 (initial search) and December 2022 (updated search); Medline, EMBASE, PsychINFO, Cochrane, CINAHL, ERIC, Web of Science and Google Scholar. Eligible studies involving MSDs and HL or either of the HL dimensions related to finding, understanding, appraising or applying health information in adolescents were considered. Any dimension of HL studied, the outcome measure(s) used to assess HL and the type of MSD examined were charted, reviewed and synthesised. A directed content analysis was used for the subjective interpretation of text data. RESULTS: A total of 16 841 studies were identified and 33 were eligible for inclusion. Ten articles presented HL with a definition or description in the theoretical background. The remaining 23 studies involved finding, understanding, appraising or applying health information, without using the term 'health literacy'. Most of the studies addressed how adolescents understand (n=32), and apply (n=23) health information, while few studies focused on how they find (n=11) and appraise (n=7) musculoskeletal health information. CONCLUSION: Few studies have addressed HL and MSDs in adolescents explicitly, while most studies have considered dimensions of HL. Our findings suggest that there is important work to be done to align conceptual understandings with the measurement of HL in adolescents and that further research should be carried out to explore how HL is distributed among adolescents with MSDs and how adolescents living with MSDs report their HL.
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Letramento em Saúde , Doenças Musculoesqueléticas , Adolescente , HumanosRESUMO
BACKGROUND: The importance of patient-reported outcomes (PRO) in hypospadias is increasing. However, more knowledge is needed concerning genital self-perception on appearance and function in adolescents. The complication rates for distal hypospadias is different from that for severe hypospadias, and expected outcomes related to sexual well-being and cosmetics may also differ. OBJECTIVE: To investigate 16-year-olds' self-reported outcomes on penile appearance, sexual well-being, and voiding function in distal hypospadias, and compare with that of healthy male adolescents and a surgeon's view. STUDY DESIGN: Sixteen-year-old patients operated for distal hypospadias were included in this cross-sectional study and compared to a group of healthy adolescents. The assessment tools included the adolescents' self-perception on genital appearance and function measured by Pediatric Penile Perception Score (PPPS) and their responses to a structured interview. We also included information on clinical data from the electronic medical records, together with a physical examination and an uroflowmetry. RESULTS: Seventy patients and 61 healthy adolescents participated. Patients and the comparison group reported no differences on sexual well-being. The patients were satisfied with penile appearance, however their overall PPPS was significantly lower (8.9), compared to the comparison group (9.6, p = 0.03). Thirty-nine percent of patients had complications leading to re-interventions and reported lower scores on genital self-perception on appearance and function compared to those who had not re-interventions. Voiding function was normal. The surgeon's score on appearance was comparable to the patients' score. DISCUSSION: A key finding in our study is the patients' high satisfaction on sexual well-being, which was similar to healthy adolescents. The patients were also satisfied with penile appearance but scored significantly lower than the comparison group. Surgeons and patients had comparable scores on appearance; however, they seemed to emphasize different aspects of appearance. Our results on penile appearance and sexual well-being are comparable to those of other studies on distal hypospadias. In our study, re-interventions were associated with more negative genital self-perception on appearance and function, similar to findings in other studies. CONCLUSION: Our results show overall positive satisfaction on sexual well-being, voiding function and penile appearance despite less satisfaction on penile appearance when compared with the comparison group. Satisfaction was reported to be good also in patients experiencing re-interventions.
Assuntos
Hipospadia , Humanos , Masculino , Adolescente , Criança , Hipospadia/cirurgia , Estudos Transversais , Inquéritos e Questionários , Pênis/cirurgia , Comportamento SexualRESUMO
PURPOSE: To study quality of life (QoL) in patients with liver metastases from colorectal carcinoma (CRC) following liver transplantation (Ltx). METHODS: Ten patients participated in a prospective explorative pilot study. Inclusion criteria were nonresectable liver-only metastases determined by CT/MRI-, PET/CT- scans and colonoscopy, and ECOG 0-1. Primary outcome was QoL assessed by the EORTC-C30 questionnaires at baseline, and at 3, 6 and 12 months after Ltx. RESULTS: The patients' age ranged from 50 to 63 years. Nine of 10 patients were observed for 12 months. One patient did not return the form at 6 months and died shortly after because of recurrence of the malignant disease. Compared to baseline, Ltx resulted in sustained excellent global health status scale (score of 100) in one patient, improved scores in 4 and unchanged scores in 3 patients at 12 months. The majority of the patients also reported good functional scores at follow-ups. Although two patients had marked symptoms both before and after Ltx, the patients in general reported low levels of pain and fatigue before and after surgery. CONCLUSION: The present study indicates that CRC patients with liver-only metastases who receive Ltx have good QoL and have mostly minor symptoms the first year after Ltx.
Assuntos
Neoplasias Colorretais/patologia , Neoplasias Hepáticas/secundário , Transplante de Fígado , Qualidade de Vida , Neoplasias Colorretais/fisiopatologia , Feminino , Humanos , Neoplasias Hepáticas/fisiopatologia , Neoplasias Hepáticas/cirurgia , Masculino , Pessoa de Meia-Idade , Noruega , Projetos Piloto , Estudos Prospectivos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health. DESIGN: This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study. SETTINGS: Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway. PARTICIPANTS: People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69). RESULTS: The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual's HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services. CONCLUSION: During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.
Assuntos
Letramento em Saúde , Doença Pulmonar Obstrutiva Crônica , Humanos , Qualidade de Vida , Estudos Transversais , Avaliação das Necessidades , Doença Pulmonar Obstrutiva Crônica/terapiaRESUMO
OBJECTIVES: The way health literacy is understood (conceptualised) should be closely linked to how it is measured (operationalised). This study aimed to gain insights into how health literacy is defined and measured in current health literacy research and to examine the relationship between health literacy definitions and instruments. DESIGN: Systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: The MEDLINE, PsycINFO, ERIC and CINAHL databases were searched for articles published during two randomly selected months (March and October) in 2019. ELIGIBILITY CRITERIA: We included articles with a quantitative design that measured health literacy, were peer-reviewed and original, were published in the English language and included a study population older than 16 years. DATA EXTRACTION AND SYNTHESIS: Six researchers screened the articles for eligibility and extracted the data independently. All health literacy definitions and instruments were considered in relation to category 1 (describing basic reading and writing skills, disease-specific knowledge and practical skills) and category 2 (social health literacy competence and the ability to interpret and critically assess health information). The categories were inspired by Nutbeam's descriptions of the different health literacy levels. RESULTS: 120 articles were included in the review: 60 within public health and 60 within clinical health. The majority of the articles (n=77) used instruments from category 1. In total, 79 of the studies provided a health literacy definition; of these, 71 were in category 2 and 8 were in category 1. In almost half of the studies (n=38), health literacy was defined in a broad perspective (category 2) but measured with a more narrow focus (category 1). CONCLUSION: Due to the high degree of inconsistency between health literacy definitions and instruments in current health literacy research, there is a risk of missing important information about health literacy considered be important to the initial understanding of the concept recognised in the studies. PROSPERO REGISTRATION NUMBER: CRD42020179699.
Assuntos
Letramento em Saúde , Bases de Dados Factuais , HumanosRESUMO
BACKGROUND: Patients' ability to perform self-management may be compromised if they are unable to fully comprehend their diagnosis and treatments. Weaknesses in health literacy (HL) pose a considerable health concern and may negatively influence SM, as well as interactions with health care professionals (HCP) and peers. OBJECTIVES: To investigate possible associations between comprehensive HL and psoriasis education from HCPs in a cohort of patients with psoriasis. Another aim was to examine essential sources for psoriasis information and how these are evaluated. METHODS: Cross-sectional questionnaire data, including the comprehensive Health Literacy Questionnaire (HLQ) from 825 patients with psoriasis who had participated in Climate Helio Therapy (CHT). RESULTS: Participants having received HCP education scored significantly better in all HLQ scales compared to participants who did not receive such education (Cohen's effect size: 0.24 to 0.44). The CHT program, peers, and dermatologists were the most important sources of psoriasis information. People having participated more than once in CHT presented better HL scores and also higher self-management (skill and technique acquisition) and more psoriasis knowledge (effect-size: 0.75). CONCLUSIONS: Psoriasis education by HCP seems important for HL and psoriasis knowledge. Patients may need multiple approaches and repetitions over time to be health literate and effective self-managers.