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1.
Cancer Control ; 29: 10732748221079480, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35403444

RESUMO

OBJECTIVES: Cervical cancer is 99.8% preventable when detected early; however, uptake of screening in the United Kingdom is at a 20-year low. Recently, a number of social media influencers have video logged about their experiences of cervical screening through narrative communication with their audience. Here we aimed to explore if accessing cervical screening information from a social media influencer can impact the theory of planned behaviour variables and predict intention to attend cervical screening appointments. DESIGN: Utilising a cross-sectional design a volunteer sample of 102 UK women (mean age = 28; SD = 3.10; range = 25-35) took part in an online questionnaire study. RESULTS: Hierarchical regression modelling revealed attitude as a significant predictor of intention to attend a cervical screening appointment and that social media influencers affect attitudes of their audience, indirectly influencing intention to attend. CONCLUSION: Health messages communicated by social media influencers are effective in promoting positive attitudes but not directly influence intention to attend towards cervical screening. Further research should explore influencer impact on attitudes towards this health behaviour with the ultimate aim of increasing attendance and consequently saving lives.


Assuntos
Mídias Sociais , Neoplasias do Colo do Útero , Adulto , Estudos Transversais , Detecção Precoce de Câncer , Feminino , Humanos , Intenção , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle
2.
Health Qual Life Outcomes ; 18(1): 237, 2020 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-32682425

RESUMO

BACKGROUND: In early-stage Non-Small Cell Lung Cancer (NSCLC) patients, little is known about how to measure patient participation in Shared-Decision Making (SDM). We examined the psychometric properties and clinical acceptability of the Decision Self-Efficacy scale (DSE) in a cohort of patients undergoing to Stereotactic Ablative Radiotherapy (SABR) or Video-assisted Thoracoscopic Surgery (VATS) to capture patient involvement in treatment decisions. METHODS: In the context of a prospective longitudinal study (Life after Lung Cancer-LiLAC) involving 244 patients with early-stage NSCLC, 158 (64.7%) patients completed the DSE either on paper or electronically online prior to treatment with SABR or VATS pulmonary resection. DSE psychometric properties were examined using: principal components analysis of item properties and internal structure, and internal construct validity; we also performed a sensitivity analysis according to Eastern Cooperative Oncology Group Performance Status (ECOG PS), gender, age and treatment received (VATS or SABR) difference. RESULTS: Exploratory factor analysis using polychoric correlations substantiated that the 11 item DSE is one scale accounting for 81% of the variance. We calculated a value of 0.96 for Cronbach's alpha for the total DSE score. DSE scores did not differ by gender (p = 0.37), between the two treatment groups (p = 0.09) and between younger and older patients (p = 0.4). However, patients with an ECOG PS > 1 have a DSE mean of 73.8 (SD 26) compared to patients with a PS 0-1 who have a DSE mean of 85.8 (SD 20.3 p = 0.002). CONCLUSION: Findings provide preliminary evidence for the reliability and validity of the DSE questionnaire in this population. However, future studies are warranted to identify the most appropriate SDM tool for clinical practice in the lung cancer treatment field.


Assuntos
Carcinoma Pulmonar de Células não Pequenas/psicologia , Tomada de Decisão Compartilhada , Neoplasias Pulmonares/psicologia , Medidas de Resultados Relatados pelo Paciente , Idoso , Idoso de 80 Anos ou mais , Carcinoma Pulmonar de Células não Pequenas/terapia , Análise Fatorial , Feminino , Humanos , Estudos Longitudinais , Neoplasias Pulmonares/terapia , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Radiocirurgia/efeitos adversos , Reprodutibilidade dos Testes , Cirurgia Torácica Vídeoassistida/efeitos adversos
3.
BMC Cancer ; 17(1): 318, 2017 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-28482877

RESUMO

BACKGROUND: eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is an internet based system for patients to self-report symptoms and side effects (adverse events or AE) of cancer treatments. eRAPID allows AE reporting from home and patient reported data is accessible via Electronic Patient Records (EPR) for use in routine care. The system can generate alerts to clinical teams for severe AE and provides patient advice on managing mild AEs. The overall aims of eRAPID are to improve the safe delivery of cancer treatments, enhance patient care and standardise AE documentation. METHODS: The trial is a prospective randomised two-arm parallel group design study with repeated measures and mixed methods. Participants (adult patients with breast cancer on neo-adjuvant or adjuvant chemotherapy, colorectal and gynaecological cancer receiving chemotherapy) are randomised to receive the eRAPID intervention or usual care over 18 weeks of treatment. Participants in the intervention arm receive training in using the eRAPID system to provide routine weekly adverse event reports from home. Hospital staff can access eRAPID reports via the EPR and use the information during consultations or phone calls with patients. Prior to commencing the full trial an internal pilot phase was conducted (N = 87 participants) to assess recruitment procedures, consent and attrition rates, the integrity of the intervention information technology and establish procedures for collecting outcome data. The overall target sample for the trial is N = 504. The primary outcome of the trial is quality of life (FACT-G) with secondary outcomes including health economics (costs to patients and the NHS), process of care (e.g. contacts with the hospital, number of admissions, clinic appointments and changes to treatment/medications) and patient self-efficacy. Outcome data is collected at baseline, 6, 12, 18 weeks and 12 months. The intervention is also being evaluated via end of study interviews with patient participants and clinical staff. DISCUSSION: The pilot phase was completed in February 2016 and recruitment and attrition rates met criteria for continuing to the full trial. Recruitment recommenced in May 2016 and is planned to continue until December 2017. Overall findings will determine the value of the eRAPID intervention for supporting the care of patients receiving systemic cancer treatment. TRIAL REGISTRATION: Current Controlled Trials ISRCTN88520246 . Registered 11 September 2014.


Assuntos
Sistemas de Notificação de Reações Adversas a Medicamentos/instrumentação , Antineoplásicos/efeitos adversos , Eletrônica Médica , Neoplasias/tratamento farmacológico , Antineoplásicos/uso terapêutico , Feminino , Humanos , Internet , Estudos Prospectivos , Qualidade de Vida
5.
Qual Life Res ; 26(6): 1427-1437, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28168602

RESUMO

PURPOSE: This study assessed the uptake of the CONsolidated Standards of Reporting Trials (CONSORT)-Patient-Reported Outcomes (PRO) statement; determined if use of CONSORT-PRO was associated with more complete reporting of PRO endpoints in randomised controlled trials (RCTs) and identified the extent to which high-impact journals publishing RCTs with PRO endpoints endorse CONSORT-PRO. METHODS: CONSORT-PRO citations were identified by systematically searching Medline, EMBASE and Google from 2013 (year CONSORT-PRO released) to 17 December 2015. RCTs that cited CONSORT-PRO (cases) were compared to a comparable control sample of RCTs in terms of adherence to CONSORT-PRO using t tests. General linear models assessed the relationship between CONSORT-PRO score and key, pre-specified variables. The 100 highest-impact journals that published RCTs with PRO endpoints (2014-2015) were identified via a systematic Medline search. Instructions for authors were reviewed to determine whether journals endorsed CONSORT-PRO. RESULTS: Total CONSORT-PRO scores ranged from 47 to 100% for cases and 25-96% for controls. Cases had significantly higher total CONSORT-PRO scores compared to controls: t = 2.64, p = 0.01. 'Citing CONSORT-PRO', 'journal endorsing CONSORT-PRO' and 'dedicated PRO paper' were significant predictors of higher CONSORT-PRO adherence score: R 2 = 0.48, p < 0.001. 11/100 top-ranked journals endorsed CONSORT-PRO in their instructions to authors, seven of these journals published RCTs included as cases in this study. CONCLUSION: This study demonstrated improved PRO reporting associated with journal endorsement and author use of the CONSORT-PRO extension. Despite growing awareness, more work is needed to promote appropriate use of CONSORT-PRO to improve completeness of reporting; in particular, stronger journal endorsement of CONSORT-PRO.


Assuntos
Medidas de Resultados Relatados pelo Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto/normas , Determinação de Ponto Final/métodos , Determinação de Ponto Final/normas , Humanos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto/métodos
6.
Lancet ; 385 Suppl 1: S38, 2015 Feb 26.
Artigo em Inglês | MEDLINE | ID: mdl-26312860

RESUMO

BACKGROUND: In the USA, more than 7200 new cases of anal cancer were diagnosed in 2014 with incidence rising. Concurrent chemoradiotherapy improves cancer-related outcomes but has led to an increase in acute and late adverse events. Patient-reported outcomes (PRO) are increasingly included in trials as a surrogate measure for reporting of late adverse events. This study aimed to select the most effective PRO to use in clinical research and practice for anal cancer since no questionnaire specific for anal cancer has been developed. METHODS: A mixed methods approached was used. A systematic review estimated the frequency of use of PROs and clinician reporting instruments used in anal cancer trials including radiation treatment. Health professional semi-structured interviews explored preferred questionnaires and revealed missing items; analysis was done using the framework approach. Two symptom-based, validated questionnaires were selected and assessed by means of inductive content analysis to highlight discrepancies relevant to anal cancer. FINDINGS: 34 relevant studies reported on radiotherapy adverse events. For PROs, EORTC QLQ-C30 (n=5) and EORTC QLQ-CR38 (n=3) were used most frequently. RTOG/EORTC (n=17) and CTCAE (n=15) criteria were most commonly used for clinician reporting. EORTC QLQ-C30 and EORTC QLQ-CR38, and National Cancer Institute's (NCI) PRO-CTCAE were selected for further analysis. No consensus for questionnaire content or design was found through health professional interviews (n=8). Domains and codes relevant to anal cancer treatment were selected from interviews to inform questionnaire analysis. 27 domains and 60 codes were found in EORTC questionnaires, and 21 domains and 44 codes in NCI PRO-CTCAE. Four domains and 16 codes were not covered by EORTC systems including radiation skin reaction. Six domains and 45 codes were not covered by NCI PRO-CTCAE including vaginal stenosis and bowel urgency. INTERPRETATION: This study shows that there are gaps in the questionnaires commonly used to record adverse events using PROs for anal cancer. Expert opinion is valuable in highlighting relevant missing items but provides no consensus on design and wording preferences. For use in longitudinal follow-up of patients with anal cancer treated with (chemo)radiation, the EORTC-QLQ system has the fewest missing symptom items for use as a validated PRO in clinical research and practice. FUNDING: This abstract presents independent research funded by the National Institute for Health Research (NIHR).

7.
Acta Oncol ; 55(9-10): 1220-1226, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27551774

RESUMO

BACKGROUND: Standardized reporting of treatment-related adverse events (AE) is essential in clinical trials, usually achieved by using the National Cancer Institute (NCI) Common Terminology Criteria for Adverse Events (CTCAE) reported by clinicians. Patient-reported adverse events (PRAE) may add value to clinician assessments, providing patient perspective on subjective toxicity. We developed an online patient symptom report and self-management system for real-time reporting and managing AE during cancer treatment integrated with electronic patient records (eRAPID). As part of this program we developed a patient version of the CTCAE (version 4.0), rephrasing terminology into a self-report format. We explored patient understanding of these items via cognitive interviews. MATERIAL AND METHOD: Sixty patients (33 female, 27 male) undergoing treatment were purposively sampled by age, gender and tumor group (median age 61.5, range 35-84, 12 breast, 12 gynecological, 13 colorectal, 12 lung and 11 renal). Twenty-one PRAE items were completed on a touch-screen computer. Subsequent audio-recorded cognitive interviews and thematic analysis explored patients' comprehension of items via verbal probing techniques during three interview rounds (n = 20 patients/round). RESULTS: In total 33 item amendments were made; 29% related to question comprehension, 68% response option and 3% order effects. These amendments to phrasing and language improved patient understanding but maintained CTCAE grading and key medical information. Changes were endorsed by members of a patient advisory group (N = 11). CONCLUSION: Item adaptations resulted in a bank of consistently interpreted self-report AE items for use in future research program. In-depth analysis of items through cognitive interviews is an important step towards developing an internationally valid system for PRAE, thus improving patient safety and experiences during cancer treatment.


Assuntos
Antineoplásicos/uso terapêutico , Uso Significativo , Neoplasias/tratamento farmacológico , Sistemas On-Line , Questionário de Saúde do Paciente , Autorrelato , Adulto , Idoso , Idoso de 80 Anos ou mais , Compreensão , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos , Registros Eletrônicos de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Autogestão , Terminologia como Assunto
8.
Support Care Cancer ; 24(12): 5041-5048, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27540738

RESUMO

OBJECTIVES: In 2010, St. James Institute of Oncology (Leeds, UK) created a new acute oncology service (AOS) consisting of a new admissions unit with a nurse-led telephone triage (TT) system. This audit cycle (March 2011 and June 2013) evaluated patient experiences of the reconfigured AOS and staff use of the TT system. METHODS: Patient views were elicited via a questionnaire and semi-structured interviews. The TT forms were analysed descriptively evaluating completion and data quality, reported symptoms and their severity and advice given (including admission rates). RESULTS: Patients (n = 40) reported high satisfaction with the new AOS. However, 56 % of patients delayed 2 days or more before contacting the unit. In 2011, 26 % of all the admitted patients were triaged via the TT system; 133 TT forms were completed. In June 2013, 49 % of the admitted patients were triaged; 264 forms were completed. The most commonly reported symptoms on the TT forms were pain, pyrexia/rigors/infection, diarrhoea, vomiting and dyspnoea. Half of the patients using the TT system were admitted (52 % in 2011, 49 % in 2013). CONCLUSIONS: Our audit provided evidence of successful implementation of the TT system with the number of TT forms doubling from 2011 to 2013. The new AOS was endorsed by patients, with the majority satisfied with the care they received.


Assuntos
Auditoria Clínica/métodos , Testes Diagnósticos de Rotina/métodos , Adulto , Idoso , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros , Inquéritos e Questionários , Telefone , Triagem , Adulto Jovem
10.
Heliyon ; 10(3): e24328, 2024 Feb 15.
Artigo em Inglês | MEDLINE | ID: mdl-38318028

RESUMO

Background: Goldenhar Syndrome is a rare congenital condition, typically characterized by craniofacial abnormalities and vertebral malformations. Due to its rare and complex nature, the etiology is unconfirmed, resulting in parental uncertainty and subsequent emotional sequelae. Clinical manifestations have been researched but few studies have explored parental wellbeing and Quality of Life (QoL). In this qualitative study, we explore parental views of the challenges and lived experience of raising a child with Goldenhar Syndrome. Methods: Ten biological parents (five mothers and five fathers), recruited at the Goldenhar UK Conference, took part in audio-recorded, semi-structured interviews. Interviews explored emotional wellbeing, views surrounding causation, support accessed, challenges faced, experience of stigma and future outlooks. Reflexive thematic analysis was employed, and transcripts were subject to deductive and inductive coding. Results: Seven themes were identified: support networks (Goldenhar UK), rollercoaster of emotion; gendered coping; uncertainty; societal reactions; coping with challenge and acceptance. Conclusions: This is the first-time the life perspectives of parents, raising a child with Goldenhar Syndrome, have been explored via interviews. We have unearthed prominent issues that impact parental QoL including isolation and distress at the point of diagnosis, and throughout the multidisciplinary health journey. We have also established significant indicators of the ongoing QoL challenges faced by young people with Goldenhar Syndrome. Future work is underway exploring these issues further with teenagers, young people and adults with Goldenhar to develop a conceptual framework of their QoL. This will be used to develop a bespoke patient reported outcome (PRO) to give voice to the challenges children and young adults face during their medical journey.

11.
JCO Oncol Pract ; 20(4): 581-590, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38266205

RESUMO

PURPOSE: A randomized controlled trial of online symptom monitoring during chemotherapy with electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) system found improved symptom control and patient self-efficacy, without increasing hospital admissions and visits. The aim of this study was to evaluate the cost-effectiveness of the eRAPID eHealth intervention compared with usual care for patients receiving systemic treatment for colorectal, breast, or gynecologic cancers in the United Kingdom. METHODS: An embedded economic evaluation was conducted alongside the trial evaluating the effectiveness of eRAPID from health care provider and societal perspectives. Costs and quality-adjusted life-years (QALYs) of patients were compared over 18 weeks of the trial. Incremental cost-effectiveness ratios (ICERs) were estimated and compared with the National Institute for Health and Care Excellence cost-effectiveness threshold. Uncertainty around the ICER was explored using nonparametric bootstrapping and sensitivity analyses. Follow-up data were collected 12-months after random assignment for a subset of the study sample to conduct exploratory analysis of potential longer-term effects. RESULTS: Patients in the eRAPID group had the highest QALY gain and lowest costs over 18 weeks. Although differences were small and not statistically significant, eRAPID had a 55%-58% probability of being more cost-effective than usual care. Patient out-of-pocket costs were lower in the eRAPID group, indicating eRAPID may help patients access support needed within the National Health Service. Exploratory 12-months analysis showed small differences in costs and QALYs, with higher QALY gains in the eRAPID group but also higher costs. Exploratory subgroup analysis by disease status indicated that the eRAPID intervention was cost-effective for patients with early-stage cancers but not for patients with metastatic disease. CONCLUSION: Despite small differences in QALYs and costs, the analyses show potential cost-effectiveness of online symptom monitoring, when added to usual care, particularly during adjuvant systemic treatment for early-stage cancers.


Assuntos
Neoplasias , Telemedicina , Humanos , Feminino , Análise Custo-Benefício , Medicina Estatal
12.
J Patient Rep Outcomes ; 7(1): 121, 2023 Nov 27.
Artigo em Inglês | MEDLINE | ID: mdl-38010558

RESUMO

BACKGROUND: PROs are valuable tools in clinical care to capture patients' perspectives of their health, symptoms and quality of life. However the COVID-19 pandemic has had profound impacts on all aspects of life, in particular healthcare and research. This study explores the views of UK and Irish health professionals, third sector and pharmaceutical industry representatives and academic researchers on the impact of COVID-19 on PRO collection, use and development in clinical practice. METHODS: A volunteer sample took part in a 10 question cross sectional qualitative survey, on the impact of COVID-19, administered online via Qualtrics. Demographic data was descriptively analysed, and the qualitative free text response data was subject to thematic analysis and summarised within the Strengths, Weaknesses, Opportunities and Threats (SWOT) framework. RESULTS: Forty nine participants took part located in a range of UK settings and professions. Participants highlighted staff strengths during the pandemic including colleagues' flexibility and ability to work collaboratively and the adoption of novel communication tools. Weaknesses were a lack of staff capacity to continue or start PRO projects and insufficient digital infrastructure to continue studies online. Opportunities included the added interest in PROs as useful outcomes, the value of electronic PROs for staff and patients particularly in relation to integration into systems and the electronic patient records. However, these opportunities came with an understanding that digital exclusion may be an issue for patient groups. Threats identified included that the majority of PRO research was stopped or delayed and funding streams were cut. CONCLUSIONS: Although most PRO research was on hold during the pandemic, the consensus from participants was that PROs as meaningful outcomes were valued more than ever. From the opportunities afforded by the pandemic the development of electronic PROs and their integration into electronic patient record systems and clinical practice could be a lasting legacy from the COVID-19 pandemic.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Pandemias , Qualidade de Vida , Estudos Transversais , Irlanda/epidemiologia , Reino Unido/epidemiologia
13.
Int J Radiat Oncol Biol Phys ; 115(3): 664-676, 2023 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-36241128

RESUMO

PURPOSE: Radiation therapy (RT) and chemoRT for pelvic cancers increase survival but are associated with serious treatment-related symptoms. Electronic-patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is a secure online system for patients to self-report symptoms, generating immediate advice for hospital contact or self-management. This pilot study aimed to establish feasibility and acceptability of the system. METHODS AND MATERIALS: In a prospective 2-center randomized parallel-group pilot study, patients undergoing radical pelvic RT for prostate cancer (prostateRT) or chemoRT for lower gastrointestinal and gynecological cancers were randomized to usual care (UC) or eRAPID (weekly online symptom reporting for 12, 18, and 24 weeks). Primary outcomes were recruitment/attrition, study completion, and patient adherence. Secondary outcomes were effect on hospital services and performance of patient outcome measures. Missing data, floor/ceiling effects, and mean change scores were examined for Functional Assessment of Cancer Therapy (FACT-G), European Organisation for Research and Treatment of Cancer, Quality of Life (EORTC QLQ C-30), self-efficacy, and EuroQol (EQ5D). RESULTS: From 228 patients approached, 167 (73.2%) were consented and randomized (83, eRAPID; 84, UC; 87, prostateRT; 80, chemoRT); 150 of 167 completed 24 study weeks. Only 16 patients (9.6%) withdrew (10, eRAPID; 6, UC). In the eRAPID arm, completion rates were higher in patients treated with prostateRT compared with chemoRT (week 1, 93% vs 69%; week 2, 93% vs 68%; week 12, 69% vs 55%). Overall, over 50% of online reports triggered self-management advice for milder adverse events. Unscheduled hospital contact was low, with no difference between eRAPID and UC. Return rates for outcome measures were excellent in prostateRT (97%-91%; 6-24 weeks) but lower in chemoRT (95%-55%; 6-24 weeks). Missing data were low (1%-4.1%), ceiling effects were evident in EQ5D-5L, self-efficacy-scale, and FACT-Physical Wellbeing. At 6 weeks, the chemoRT-eRAPID group showed less deterioration in FACT-G, EORTC QLQ-C30, and EQ5D-Visual Analogue Scale than UC, after baseline adjustment. CONCLUSIONS: eRAPID was successfully added to UC at 2 cancer centers in different patient populations. Acceptability and feasibility were confirmed with excellent adherence by prostate patients, but lower by those undergoing chemoRT for gynecological cancers.


Assuntos
Neoplasias , Qualidade de Vida , Masculino , Humanos , Projetos Piloto , Estudos Prospectivos , Autorrelato
14.
Psychooncology ; 26 Suppl 2: 29, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28271582
15.
Eur J Trauma Emerg Surg ; 48(3): 1683-1698, 2022 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34175971

RESUMO

PURPOSE: There is relatively limited large scale, long-term unified evidence to describe how quality of life (QoL) and functional outcomes are affected after polytrauma. The aim of this study is to review validated measures available to assess QoL and functional outcomes and make recommendations on how best to assess patents after major trauma. METHODS: PubMed and EMBASE databases were interrogated to identify suitable patient-reported outcome measures (PROMs) for use in major trauma, and current practice in their use globally. RESULTS: Overall, 81 papers met the criteria for inclusion and evaluation. Data from these were synthesised. A full set of validated PROMs tools were identified for patients with polytrauma, as well as critique of current tools available, allowing us to evaluate practice and recommend specific outcome measures for patients following polytrauma, and system changes needed to embed this in routine practice moving forward. CONCLUSION: To achieve optimal outcomes for patients with polytrauma, we will need to focus on what matters most to them, including their needs (and unmet needs). The use of appropriate PROMs allows evaluation and improvement in the care we can offer. Transformative effects have been noted in cases where they have been used to guide treatment, and if embedded as part of the wider system, it should lead to better overall outcomes. Accordingly, we have made recommendations to this effect. It is time to seize the day, bring these measures even further into our routine practice, and be part of shaping the future.


Assuntos
Traumatismo Múltiplo , Qualidade de Vida , Bases de Dados Factuais , Humanos , Traumatismo Múltiplo/terapia , Avaliação de Resultados em Cuidados de Saúde
16.
J Patient Rep Outcomes ; 6(1): 30, 2022 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-35362836

RESUMO

INTRODUCTION: The current service metrics used to evaluate quality in emergency care do not account for specific healthcare outcome goals for older people living with frailty. These have previously been classified under themes of 'Autonomy' and 'Functioning'. There is no person-reported outcome measure (PROM) for older people with frailty and emergency care needs. This study aimed to identify and co-produce recommendations for instruments potentially suitable for use in this population. METHODS: In this systematic review, we searched six databases for PROMs used between 2010 and 2021 by older people living with frailty receiving acute hospital care. Studies were reviewed against predefined eligibility criteria and appraised for quality using the COSMIN Risk of Bias checklist. Data were extracted to map instrument constructs against an existing framework of acute healthcare outcome goals. Instrument face and content validity were assessed by lay collaborators. Recommendations for instruments with potential emergency care suitability were formed through co-production. RESULTS: Of 9392 unique citations screened, we appraised the full texts of 158 studies. Nine studies were identified, evaluating nine PROMs. Quality of included studies ranged from 'doubtful' to 'very good'. Most instruments had strong evidence for measurement properties. PROMs mainly assessed 'Functioning' constructs, with limited coverage of 'Autonomy'. Five instruments were considered too burdensome for the emergency care setting or too specific for older people living with frailty. CONCLUSIONS: Four PROMs were recommended as potentially suitable for further validation with older people with frailty and emergency care needs: COOP/WONCA charts, EuroQol, McGill Quality of Life (Expanded), and Palliative care Outcome Scale.

17.
Psychooncology ; 20(6): 601-8, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21308857

RESUMO

OBJECTIVE: Emotional distress (ED) is an under-diagnosed problem in cancer patients and over the last decade a number of national guidelines have recommended an assessment and management model based on appropriate health professional response to a hierarchy of patient need. This study explores the views of cancer professionals regarding their current roles and responsibilities in the detection and management of ED, use of screening tools and access to expert psychological support. METHODS: Interviews with 23 professionals were conducted [6 clinical nurse specialists (CNS), 8 oncologists, 4 surgeons and 5 ward sisters] from hospitals in Yorkshire, UK. Data were evaluated using framework analysis. RESULTS: Detection of ED was seen to be the responsibility of the whole cancer team though nurses, particularly CNSs, are heavily depended upon to assess and manage distress. Experience of screening tools was limited and a number of reservations were expressed about routine implementation. A wide range of services are used to support distressed patients but a lack of referral guidance and access to specialist psychological care were reported to be a significant barrier to effective management. CONCLUSIONS: Cancer professionals describe working within the fundamental principles of the guidance frameworks; however, access to specialist support do not appear to meet recommendations, leaving the CNS with considerable responsibility for the detection and management of ED. Support for ED may be improved by the introduction of routine screening along with appropriate training and implementation of referral guidelines to assist professionals in accessing specialist psychology services.


Assuntos
Transtornos de Adaptação/diagnóstico , Transtornos de Adaptação/terapia , Atitude do Pessoal de Saúde , Transtorno Depressivo/diagnóstico , Transtorno Depressivo/terapia , Neoplasias/psicologia , Equipe de Assistência ao Paciente , Transtornos de Adaptação/psicologia , Adulto , Comportamento Cooperativo , Transtorno Depressivo/psicologia , Inglaterra , Feminino , Acessibilidade aos Serviços de Saúde , Necessidades e Demandas de Serviços de Saúde , Humanos , Capacitação em Serviço , Comunicação Interdisciplinar , Masculino , Pessoa de Meia-Idade
18.
Lung Cancer ; 162: 71-78, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34741885

RESUMO

INTRODUCTION: Video-assisted thoracoscopic (VATS) lung resection is the recommended curative treatment for early-stage non-small cell lung cancer (NSCLC). Patients considered at high surgical risk, are treated with stereotactic ablative body radiotherapy (SABR) as a lower morbidity alternative. This study aims to investigate the impact of SABR and VATS resection on patients' quality of life (QoL) over the first year after treatment. METHODS: A prospective longitudinal observational study recruiting early-stage NSCLC patients from a single UK centre. QoL was assessed with EORTC QLQ-C30 and Lung Cancer Module LC13 at baseline, 6 weeks and 3, 6 and 12 months post-treatment. RESULTS: From 01.03.2017 till 01.03.2018, 244/281 patients (87%) consented to participate, 225 (95 SABR and 130 VATS) were included in the analysis. SABR patients had significantly worse baseline QoL scores than VATS patients, even after adjusting for preoperative clinical factors (C-30 Global Health mean: SABR = 53.8, VATS = 71.2; Physical Functioning mean: SABR = 57, VATS = 82.2; Fatigue mean: SABR = 43.5, VATS = 23.7; C30 Dyspnea mean: SABR = 49.5, VATS = 26.2). During the 12 months post SABR treatment patients' QoL scores remained stable. In the VATS group, there was a deterioration 6-weeks after treatment in Role, Physical, Social Functions, Global Health, Fatigue, C30/LC13 Dyspnoea, Pain, Appetite loss, Constipation, LC13 Pain in Chest and Arms. The scores improved by 12 months without reaching the preoperative values. CONCLUSIONS: Although QoL outcomes for SABR and VATS are not comparable due to different medical selection criteria, the QoL impact of the two treatments during the first year showed different trends which will inform patients and clinicians during decision-making discussions.


Assuntos
Carcinoma Pulmonar de Células não Pequenas , Neoplasias Pulmonares , Carcinoma Pulmonar de Células não Pequenas/cirurgia , Humanos , Estudos Longitudinais , Pulmão , Neoplasias Pulmonares/cirurgia , Pneumonectomia , Estudos Prospectivos , Qualidade de Vida , Cirurgia Torácica Vídeoassistida
19.
J Clin Oncol ; 39(7): 734-747, 2021 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-33417506

RESUMO

PURPOSE: Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is an online eHealth system for patients to self-report symptoms during cancer treatment. It provides automated severity-dependent patient advice guiding self-management or medical contact and displays the reports in electronic patient records. This trial evaluated the impact of eRAPID on symptom control, healthcare use, patient self-efficacy, and quality of life (QOL) in a patient population treated predominantly with curative intent. METHODS: Patients with colorectal, breast, or gynecological cancers commencing chemotherapy were randomly assigned to usual care (UC) or the addition of eRAPID (weekly online symptom reporting for 18 weeks). Primary outcome was symptom control (Functional Assessment of Cancer Therapy-General, Physical Well-Being subscale [FACT-PWB]) assessed at 6, 12, and 18 weeks. Secondary outcomes were processes of care (admissions or chemotherapy delivery), patient self-efficacy, and global quality of life (Functional Assessment of Cancer Therapy-General, EQ5D-VAS, and EORTC QLQ-C30 summary score). Multivariable mixed-effects repeated-measures models were used for analyses. Trial registration: ISRCTN88520246. RESULTS: Participants were 508 consenting patients (73.6% of 690 eligible) and 55 health professionals. eRAPID compared to UC showed improved physical well-being at 6 (P = .028) and 12 (P = .039) weeks and no difference at 18 weeks (primary end point) (P = .69). Fewer eRAPID patients (47%) had clinically meaningful physical well-being deterioration than UC (56%) at 12 weeks. Subgroup analysis found benefit in the nonmetastatic group at 6 weeks (P = .0426), but not in metastatic disease. There were no differences for admissions or chemotherapy delivery. At 18 weeks, patients using eRAPID reported better self-efficacy (P = .007) and better health on EQ5D-VAS (P = .009). Average patient compliance with weekly symptom reporting was 64.7%. Patient adherence was associated with clinician's data use and improved FACT-PWB at 12 weeks. CONCLUSION: Real-time monitoring with electronic patient-reported outcomes improved physical well-being (6 and 12 weeks) and self-efficacy (18 weeks) in a patient population predominantly treated with curative intent, without increasing hospital workload.


Assuntos
Antineoplásicos/uso terapêutico , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Avaliação de Sintomas , Telemedicina , Terapia Assistida por Computador , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Antineoplásicos/efeitos adversos , Registros Eletrônicos de Saúde , Inglaterra , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Autoeficácia , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
20.
JMIR Form Res ; 4(9): e14450, 2020 Sep 08.
Artigo em Inglês | MEDLINE | ID: mdl-32897230

RESUMO

BACKGROUND: Increasingly, teenagers and young adults (TYAs) seek out health information online; however, it is not clear whether they possess electronic health (eHealth) literacy, defined as "the ability to select, appraise, and utilize good quality health information from the internet." A number of factors are included in the Lily model proposed by Norman and Skinner underpinning the development of eHealth literacy. It is important to understand which elements may influence the development of eHealth literacy in young people, as the current generation will continue to "Google it" when faced with a health problem throughout their lives. OBJECTIVE: The objectives of this study are to explore potential factors influencing young people's eHealth literacy and explore the underlying constructs of the eHealth Literacy Scale (eHEALS) in a population of UK university students. METHODS: A total of 188 undergraduate psychology students from a large UK University were recruited as an opportunity sample. Of these, 88.8% (167/188) of participants were female with a mean age of 20.13 (SD 2.16) years and the majority were White British (159/188, 84.6%). Employing a cross-sectional design TYAs completed the following measures exploring eHealth literacy (eHEALS): Irrational Health Belief Scale; Newest Vital Sign (NVS), a measure of functional health literacy; Need for Cognition Scale, a preference for effortful cognitive activity; and General Self-Efficacy (GSE) Scale, exploring personal agency and confidence. The eHEALS was also subject to exploratory factor analysis (EFA), for which in addition to the total variance explained, the scree plot, eigenvalues, and factor loadings were assessed to verify the structure. RESULTS: eHEALS and GSE were significantly positively correlated (r=0.28, P<.001) and hierarchical linear modeling revealed GSE as the significant predictor of scores on the eHEALS (F1,186=16.16, P<.001, R2=0.08), accounting for 8.0% of the variance. Other notable relationships were GSE and need for cognition (NFC) were also positively correlated (r=0.33, P<.001), and NFC and irrational health beliefs were significantly negatively correlated (r=-.14, P=.03). Using Spearman correlations, GSE and NVS (rs=0.14, P=.04) and NFC and NVS (rs=0.19, P=.003) were positively correlated. An EFA revealed the scale to be stable and identified a 2-factor structure related to information acquisition and information application. CONCLUSIONS: This is the first study in the UK to explore relationships between these key variables and verify the structure of the eHEALS in a TYA population in the UK. The findings that self-efficacy has a major influence firmly consolidate its status as fundamental to the development of eHealth literacy. Future studies will explore the influence of body image and the development of eHealth literacy in more diverse TYA populations.

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