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OBJECTIVE: To explore the cost-effectiveness of a web-based support tool for parents of children with Juvenile Idiopathic Arthritis. METHODS: A multi-centred randomised controlled trial was conducted in paediatric rheumatology centres in England. The WebParC intervention consisted of online information about JIA and its treatment and a toolkit using cognitive-behavioural therapy principles to support parents manage their child's JIA. An economic evaluation was performed alongside the trial involving 220 parents. The primary outcome was the self-report Pediatric Inventory for Parents measure of illness-related parenting stress, with two dimensions; difficulty and frequency. These measures along with costs were assessed post intervention at 4 months and 12 months. Costs were calculated for healthcare usage using a UK NHS economic perspective. Data was collected and analysed on the impact of caring costs on families. Uncertainty around cost effectiveness was explored using bootstrapping and cost-effectiveness acceptability curves. RESULTS: The intervention arm showed improved average Pediatric Inventory for Parents scores for the dimensions of frequency and difficulty, of 1.5 and 3.6 respectively at 4 months and. 0.35 and 0.39 at 12 months, representing improved PIP scores for the intervention arm. At both 4 and 12 month follow up the average total cost per case was higher in the control group when compared with the intervention arm with mean differences of £360 (95% CI £29.6 to £691) at 4 months and £203 (95% CI £16 to £390) at 12 months. The probability of the intervention being cost effective ranged between 49% and 54%. CONCLUSION: The WebParC intervention led to reductions in primary and secondary healthcare resource use and costs at 4 and 12 months. The intervention demonstrated particular savings for rheumatology services at both follow ups. Future economies of scale could be realised by health providers with increased opportunities for cost effectiveness over time. TRIAL REGISTRATION: ISRCTN, ISRCTN13159730.
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In many medical studies, the outcome measure (such as quality of life, QOL) for some study participants becomes informatively truncated (censored, missing, or unobserved) due to death or other forms of dropout, creating a nonignorable missing data problem. In such cases, the use of a composite outcome or imputation methods that fill in unmeasurable QOL values for those who died rely on strong and untestable assumptions and may be conceptually unappealing to certain stakeholders when estimating a treatment effect. The survivor average causal effect (SACE) is an alternative causal estimand that surmounts some of these issues. While principal stratification has been applied to estimate the SACE in individually randomized trials, methods for estimating the SACE in cluster-randomized trials are currently limited. To address this gap, we develop a mixed model approach along with an expectation-maximization algorithm to estimate the SACE in cluster-randomized trials. We model the continuous outcome measure with a random intercept to account for intracluster correlations due to cluster-level randomization, and model the principal strata membership both with and without a random intercept. In simulations, we compare the performance of our approaches with an existing fixed-effects approach to illustrate the importance of accounting for clustering in cluster-randomized trials. The methodology is then illustrated using a cluster-randomized trial of telecare and assistive technology on health-related QOL in the elderly.
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Modelos Estadísticos , Calidad de Vida , Humanos , Anciano , Ensayos Clínicos Controlados Aleatorios como Asunto , Evaluación de Resultado en la Atención de Salud , SobrevivientesRESUMEN
Many studies encounter clustering due to multicenter enrollment and nonmortality outcomes, such as quality of life, that are truncated due to death-that is, missing not at random and nonignorable. Traditional missing-data methods and target causal estimands are suboptimal for statistical inference in the presence of these combined issues, which are especially common in multicenter studies and cluster-randomized trials (CRTs) carried out among the elderly or seriously ill. Using principal stratification, we developed a Bayesian estimator that jointly identifies the always-survivor principal stratum in a clustered/hierarchical data setting and estimates the average treatment effect among them (i.e., the survivor average causal effect (SACE)). In simulations, we observed low bias and good coverage with our method. In a motivating CRT, the SACE and the estimate from complete-case analysis differed in magnitude, but both were small, and neither was incompatible with a null effect. However, the SACE estimate has a clear causal interpretation. The option to assess the rigorously defined SACE estimand in studies with informative truncation and clustering can provide additional insight into an important subset of study participants. Based on the simulation study and CRT reanalysis, we provide practical recommendations for using the SACE in CRTs and software code to support future research.
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Modelos Estadísticos , Calidad de Vida , Humanos , Anciano , Teorema de Bayes , Ensayos Clínicos Controlados Aleatorios como Asunto , SobrevivientesRESUMEN
OBJECTIVES: Subjective reports of cognitive impairment following chemotherapy are frequent in cancer patients. Objective cognitive impairment has been observed in cancer patients regardless of treatment regimen suggesting the relationship between cognitive impairment and chemotherapy is not clear cut. Little research has explored the effects of chemotherapy on cognition following surgery in colorectal cancer (CRC). The present study explored the effects of chemotherapy on cognitive performance in a sample of CRC patients. METHODS: 136 participants were recruited into a prospective cohort study: 78 CRC patients undergoing surgery and adjuvant chemotherapy, 58 CRC patients undergoing surgery only. A battery of neuropsychological tests was administered to participants 4 weeks post-surgery (T1), 12 weeks after first chemotherapy (T2) and 3 months after last chemotherapy (T3) or equivalent time-points. RESULTS: Using the criterion of scoring at least two standard-deviations below the group norm on at least one neuropsychological test, 45%-55% of all CRC patients showed cognitive deficits 10 months after surgery (T3) and 14% on at least 3 tests. However, cognition did not significantly differ between patients who had chemotherapy and those who did not. A time by group interaction effect was found on the composite cognition score using multi-level modelling suggesting a greater improvement in cognition in the surgery only group over time (p < 0.05). CONCLUSIONS: CRC patients display cognitive impairment 10 months after surgery. Chemotherapy did not worsen cognitive impairment but did appear to slow cognitive recovery relative to those undergoing surgery only. The findings demonstrate a clear need for supportive cognitive interventions for all CRC patients following treatment.
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Disfunción Cognitiva , Neoplasias Colorrectales , Humanos , Estudios Prospectivos , Estudios Longitudinales , Disfunción Cognitiva/etiología , Cognición , Quimioterapia Adyuvante/efectos adversos , Pruebas Neuropsicológicas , Neoplasias Colorrectales/tratamiento farmacológico , Neoplasias Colorrectales/cirugíaRESUMEN
BACKGROUND: There is variability in the impact of adult congenital heart disease (ACHD) on health-related quality of life (HRQoL). A greater insight into the impact of ACHD may be gained from investigating HRQoL in various diagnostic groups and considering the importance of psychosocial risk factors for poor HRQoL. OBJECTIVE: We compared the HRQoL of people with ACHD with normative data from the general population and among 4 diagnostic groups and identified risk factors for poor HRQoL in ACHD from a comprehensive set of sociodemographic, clinical, and psychosocial factors. METHODS: We conducted a cross-sectional study with 303 participants from 4 diagnostic groups Simple, Tetralogy of Fallot, Transposition of the Great Arteries, Single Ventricle who completed measures of illness perceptions, coping, social support, mood, and generic and disease-specific HRQoL. Data were analyzed using 1-sample t tests, analysis of variance, and hierarchical multiple regressions. RESULTS: There was diminished psychosocial HRQoL in the Simple group compared with the general population. Consistently significant risk factors for poor HRQoL included younger age, a perception of more severe symptoms due to ACHD, depression, and anxiety. Clinical factors were poor predictors of HRQoL. CONCLUSIONS: The findings highlight the need to develop intervention studies aiming to improve HRQoL in people with ACHD and the routine assessment of illness perceptions and mood problems during key periods in people's lives. This will help address patient misconceptions that could be tackled by clinicians or specialist nurses during routine outpatient appointments and identify people in need of psychological support.
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Cardiopatías Congénitas , Transposición de los Grandes Vasos , Adulto , Humanos , Calidad de Vida/psicología , Cardiopatías Congénitas/psicología , Estudios Transversales , Factores de RiesgoRESUMEN
BACKGROUND: To test, in a two-arm, single center, superiority, randomized controlled trial, the effectiveness of and costs associated with a patient-initiated treatment model for people with hemifacial spasm (HFS) and blepharospasm (BEB) in comparison to usual care. METHODS: One hundred and thirty patients with HFS or BEB, aged 18 years or over, were recruited from a nurse-led botulinum toxin type A clinic at an eye hospital in the United Kingdom (UK), completed baseline measures and were randomized (1:1). The intervention group determined their own botulinum toxin type A (BoNT/A) treatment schedule during the trial period (9 months) and received an information leaflet with a "hotline" number to book an appointment. Usual care appointments were scheduled by treating clinicians. Data analysts were blind to study group. The primary outcomes were disease severity and functional disability, as measured by the Jankovic Rating Scale and Blepharospasm Disability Index, respectively. Secondary outcomes included quality of life, anxiety and depression, satisfaction with care, confidence in the service, economic costs and employment days lost. RESULTS: Sixty-five patients were randomized to each group. The intervention demonstrated no statistically significant difference to usual care for any of primary outcomes. On secondary outcomes the levels of anxiety differed significantly (F2, 142.39 = 1.65, p = 0.02), with the intervention arm exhibiting a decrease and the control arm an increase (Hedges' g = - 0.26 [99% CI -0.83, 0.32]). No other statistically significant differences were found for secondary outcomes. Overall healthcare costs and costs to the patient were on average £198.95 less (95% CI -£256.76, £654.67; p = 0.10) per participant for those in the intervention compared to usual care, although this finding was not significant. CONCLUSIONS: We did not observe differences between the patient-initiated treatment model and usual care for people with BEB or HFS, on any primary outcome measure, quality of life, or depression. The patient-initiated treatment model may, however, have the potential to save healthcare costs and reduce anxiety. Patients using this new model were also equally as satisfied in the service and confident in their care as those receiving treatment as usual. TRIAL REGISTRATION: Clinicaltrials.gov ID NCT02577224 , 16th October 2015.
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Blefaroespasmo , Toxinas Botulínicas Tipo A , Espasmo Hemifacial , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Blefaroespasmo/tratamiento farmacológico , Toxinas Botulínicas Tipo A/uso terapéutico , Costos de la Atención en Salud , Espasmo Hemifacial/tratamiento farmacológico , Humanos , Persona de Mediana Edad , Calidad de Vida , Adulto JovenRESUMEN
Purpose: Benign essential blepharospasm (BEB) and hemifacial spasm (HFS) are debilitating conditions causing spasms to the eyes and/or face and can significantly impact on quality of life (QoL). Initial research has highlighted potential factors impacting on QoL in BEB, but there remains a wealth of demographic, clinical, and psychosocial factors that may contribute to QoL but have not received attention. Methods: Cross-sectional baseline data were collected before a single-masked randomised controlled trial from 130 adults with BEB and HFS recruited from botulinum toxin clinics at Moorfields Eye Hospital, London. QoL was measured using the 24-item Craniocervical Dystonia Questionnaire (CDQ24), which provides a total score and five subscale scores relating to Stigma, Emotional state, Pain, Activities of daily living (ADL), and Social/family life. Treating clinicians provided clinical data. Hierarchical multiple regressions were performed on this baseline data to identify significant predictors of QoL. Results: ADL and Stigma were the areas most impacted upon whilst patients experienced better adjustment in relation to Pain, Social/family life, and Emotional state. CDQ24 Total scores were explained by the model (80% variance) and were significantly associated with appearance concerns, emotional representations, perceived negative consequences of the condition, mood, and dose of botulinum toxin. Conclusions: Patients with BEB and HFS report a detrimental impact on ADL and perceived stigma in relation to their condition. Predominantly, individual perceptions and mood are associated with QoL in this population, rather than demographic and clinical factors, signifying areas to target in the design of future healthcare services or interventions.
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Blefaroespasmo , Toxinas Botulínicas Tipo A , Espasmo Hemifacial , Actividades Cotidianas , Adulto , Blefaroespasmo/tratamiento farmacológico , Toxinas Botulínicas Tipo A/uso terapéutico , Estudios Transversales , Espasmo Hemifacial/tratamiento farmacológico , Humanos , Calidad de VidaRESUMEN
BACKGROUND: Poor adherence to treatment is common in hemodialysis patients. However, effective interventions for adherence in this population are lacking. Small studies of behavioral interventions have yielded improvements, but clinical effectiveness and long-term effects are unclear. STUDY DESIGN: Multicenter parallel (1:1) design, blinded cluster-randomized controlled trial. SETTING & PARTICIPANTS: Patients undergoing maintenance hemodialysis enrolled in 14 dialysis centers. INTERVENTION: Dialysis shifts of eligible patients were randomly assigned to either an interactive and targeted self-management training program (HED-SMART; intervention; n=134) or usual care (control; n=101). HED-SMART, developed using the principles of problem solving and social learning theory, was delivered in a group format by health care professionals over 4 sessions. OUTCOMES & MEASUREMENTS: Serum potassium and phosphate concentrations, interdialytic weight gains (IDWGs), self-reported adherence, and self-management skills at 1 week, 3 months, and 9 months postintervention. RESULTS: 235 participants were enrolled in the study (response rate, 44.2%), and 82.1% completed the protocol. IDWG was significantly lowered across all 3 assessments relative to baseline (P<0.001) among patients randomly assigned to HED-SMART. In contrast, IDWG in controls showed no change except at 3 months, when it worsened significantly. Improvements in mineral markers were noted in the HED-SMART arm at 3 months (P<0.001) and in potassium concentrations (P<0.001) at 9 months. Phosphate concentrations improved in HED-SMART at 3 months (P=0.03), but these effects were not maintained at 9 months postintervention. Significant differences between the arms were found for the secondary outcomes of self-reported adherence, self-management skills, and self-efficacy at all time points. LIMITATIONS: Low proportion of patients with diabetes. CONCLUSIONS: HED-SMART provides an effective and practical model for improving health in hemodialysis patients. The observed improvements in clinical markers and self-report adherence, if maintained at the longer follow-up, could significantly reduce end-stage renal disease-related complications. Given the feasibility of this kind of program, it has strong potential for supplementing usual care. TRIAL REGISTRATION: Registered at ISRCTN with study number ISRCTN31434033.
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Fallo Renal Crónico/terapia , Cooperación del Paciente/estadística & datos numéricos , Diálisis Renal/normas , Automanejo/métodos , Cumplimiento y Adherencia al Tratamiento/estadística & datos numéricos , Adulto , Factores de Edad , Biomarcadores/análisis , Análisis por Conglomerados , Femenino , Humanos , Fallo Renal Crónico/diagnóstico , Pruebas de Función Renal , Masculino , Persona de Mediana Edad , Pronóstico , Diálisis Renal/tendencias , Medición de Riesgo , Factores Sexuales , Singapur , Método Simple Ciego , Resultado del TratamientoRESUMEN
Patients with appearance-altering conditions may be dissatisfied with the outcomes of reconstructive surgery due to unmet expectations. This study explored patients' expectations of orbital decompression surgery for thyroid eye disease (TED) and whether these were met. Semi-structured interviews were conducted at two times: (1) in the weeks after patients were listed for decompression surgery and before surgery; (2) up to 12 months after surgery. Thematic analysis was performed for each time point, to identify themes within the data. Fourteen adults with TED were interviewed prior to surgery and five were followed up after surgery. Thematic analyses found: (1) Prior to surgery, patients had formed expectations through online information about the procedure, consultations with physicians, the impact TED had on their lives, and speaking to relevant others. Patients had specific expectations about the procedure, the recovery, post-operative appearance and post-operative vision. (2) After surgery, patients generally felt their appearance and well-being had improved. However, dissatisfaction was linked to unanticipated specific aspects of surgical care, recovery, or appearance. Dissatisfaction can arise from unmet expectations for the outcomes of reconstructive surgery. Physicians should be aware of the processes by which patients form expectations, for example different types and quality of online information. Ensuring that preoperative expectations are realistic could enhance satisfaction after surgery.
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Descompresión Quirúrgica , Exoftalmia , Oftalmopatía de Graves/psicología , Oftalmopatía de Graves/cirugía , Motivación , Satisfacción del Paciente , Ajuste Social , Adulto , Anciano , Estética , Exoftalmia/psicología , Exoftalmia/cirugía , Femenino , Estudios de Seguimiento , Humanos , Entrevista Psicológica , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Reino UnidoRESUMEN
OBJECTIVE: We carried out a cross-sectional study to assess cognitive function in a sample of adult CHD patients, within the Functioning in Adult Congenital Heart Disease study London. The association between cognitive functioning and disease complexity was examined. METHODS: A total of 310 patients participated in this study. Patients were classified into four structural complexity groups - tetralogy of Fallot, transposition of the great arteries, single ventricle, and simple conditions. Each patient underwent neuropsychological assessment to evaluate cognitive function, including memory and executive function, and completed questionnaires to assess depression and anxiety. RESULTS: Among all, 41% of the sample showed impaired performance (>1.5 SD below the normative mean) on at least three tests of cognitive function compared with established normative data. This was higher than the 8% that was expected in a normal population. The sample exhibited significant deficits in divided attention, motor function, and executive functioning. There was a significant group difference in divided attention (F=5.01, p=0.002) and the mean total composite score (F=5.19, p=0.002) between different structural complexity groups, with the simple group displaying better cognitive function. CONCLUSION: The results indicate that many adult CHD patients display impaired cognitive function relative to a healthy population, which differs in relation to disease complexity. These findings may have implications for clinical decision making in this group of patients during childhood. Possible mechanisms underlying these deficits and how they may be reduced or prevented are discussed; however, further work is needed to draw conclusive judgements.
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Disfunción Cognitiva/epidemiología , Cardiopatías Congénitas/clasificación , Cardiopatías Congénitas/complicaciones , Adolescente , Adulto , Anciano , Ansiedad/psicología , Atención , Cognición , Estudios Transversales , Depresión/psicología , Función Ejecutiva , Femenino , Humanos , Londres/epidemiología , Masculino , Persona de Mediana Edad , Pruebas Neuropsicológicas , Escalas de Valoración Psiquiátrica , Autoinforme , Adulto JovenRESUMEN
PURPOSE: Thyroid eye disease (TED) has been found to reduce quality of life for many patients because of changes in their appearance and vision, although some seem to adjust better than others. This study was designed to investigate whether a patient's quality of life changes after having orbital decompression for improvement of appearance, vision, or both, and whether any demographic, clinical, or psychosocial factors can predict which patients might benefit from this surgery. DESIGN: This study used a within-subjects repeated-measures design, in which patients were assessed before and at 6 weeks and 6 months after surgery. PARTICIPANTS: A total of 123 adults (aged >18 years) with TED and undergoing orbital decompression surgery were recruited at Moorfields Eye Hospital. METHODS: Participants received lateral wall, medial wall, 2.5 wall, or 3 wall decompression and were followed up after surgery with a range of psychosocial and clinical assessments. MAIN OUTCOME MEASURES: The Graves' Ophthalmopathy Quality of Life (GO-QOL) scale was completed at each time point, and this was used as the dependent variable in each hierarchical multiple regression model. RESULTS: Significant improvements were found in all clinical characteristics after orbital decompression and in most psychosocial variables. The GO-QOL visual function scores did not change significantly until 6 months after surgery. In contrast, GO-QOL appearance scores changed significantly by 6 weeks after surgery and continued to increase to 6 months, reaching a minimal clinically important difference for this scale. None of the changes in clinical or psychosocial outcomes significantly predicted change in GO-QOL visual function. However, the hierarchical regression model explained 79% of the variance in change in GO-QOL appearance, with change in subjective evaluation of appearance being the only unique predictor of change in appearance-related quality of life. CONCLUSIONS: This study highlights the importance of appearance-related cognitions in predicting quality of life outcomes after surgery. Implications for clinical practice need to be considered in light of the limitations of this study, but it is suggested that psychosocial interventions targeting appearance-related cognitive processes, in particular personal evaluation of appearance, could enhance the quality of life outcomes for patients with TED undergoing orbital decompression surgery.
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Descompresión Quirúrgica , Oftalmopatía de Graves/psicología , Oftalmopatía de Graves/cirugía , Órbita/cirugía , Calidad de Vida/psicología , Adulto , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psicología , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios , Adulto JovenRESUMEN
PURPOSE OF THE STUDY: to examine the costs and cost-effectiveness of 'second-generation' telecare, in addition to standard support and care that could include 'first-generation' forms of telecare, compared with standard support and care that could include 'first-generation' forms of telecare. DESIGN AND METHODS: a pragmatic cluster-randomised controlled trial with nested economic evaluation. A total of 2,600 people with social care needs participated in a trial of community-based telecare in three English local authority areas. In the Whole Systems Demonstrator Telecare Questionnaire Study, 550 participants were randomised to intervention and 639 to control. Participants who were offered the telecare intervention received a package of equipment and monitoring services for 12 months, additional to their standard health and social care services. The control group received usual health and social care. PRIMARY OUTCOME MEASURE: incremental cost per quality-adjusted life year (QALY) gained. The analyses took a health and social care perspective. RESULTS: cost per additional QALY was £297,000. Cost-effectiveness acceptability curves indicated that the probability of cost-effectiveness at a willingness-to-pay of £30,000 per QALY gained was only 16%. Sensitivity analyses combining variations in equipment price and support cost parameters yielded a cost-effectiveness ratio of £161,000 per QALY. IMPLICATIONS: while QALY gain in the intervention group was similar to that for controls, social and health services costs were higher. Second-generation telecare did not appear to be a cost-effective addition to usual care, assuming a commonly accepted willingness to pay for QALYs. TRIAL REGISTRATION NUMBER: ISRCTN 43002091.
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Servicios de Salud Comunitaria/economía , Costos de la Atención en Salud , Evaluación de Procesos y Resultados en Atención de Salud/economía , Servicio Social/economía , Telemedicina/economía , Anciano , Anciano de 80 o más Años , Servicios de Salud Comunitaria/métodos , Análisis Costo-Beneficio , Inglaterra , Femenino , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Años de Vida Ajustados por Calidad de Vida , Tecnología de Sensores Remotos/economía , Servicio Social/métodos , Encuestas y Cuestionarios , Telemedicina/métodos , Factores de TiempoRESUMEN
BACKGROUND: The Whole Systems Demonstrator was a large, pragmatic, cluster randomised trial that compared telehealth with usual care among 3,230 patients with long-term conditions in three areas of England. Telehealth involved the regular transmission of physiological information such as blood glucose to health professionals working remotely. We examined whether telehealth led to changes in glycosylated haemoglobin (HbA1c) among the subset of patients with type 2 diabetes. METHODS: The general practice electronic medical record was used as the source of information on HbA1c. Effects on HbA1c were assessed using a repeated measures model that included all HbA1c readings recorded during the 12-month trial period, and adjusted for differences in HbA1c readings recorded before recruitment. Secondary analysis averaged multiple HbA1c readings recorded for each individual during the trial period. RESULTS: 513 of the 3,230 participants were identified as having type 2 diabetes and thus were included in the study. Telehealth was associated with lower HbA1c than usual care during the trial period (difference 0.21% or 2.3 mmol/mol, 95% CI, 0.04% to 0.38%, p = 0.013). Among the 457 patients in the secondary analysis, mean HbA1c showed little change for controls following recruitment, but fell for intervention patients from 8.38% to 8.15% (68 to 66 mmol/mol). A higher proportion of intervention patients than controls had HbA1c below the 7.5% (58 mmol/mol) threshold that was targeted by general practices (30.4% vs. 38.0%). This difference, however, did not quite reach statistical significance (adjusted odds ratio 1.63, 95% CI, 0.99 to 2.68, p = 0.053). CONCLUSIONS: Telehealth modestly improved glycaemic control in patients with type 2 diabetes over 12 months. The scale of the improvements is consistent with previous meta-analyses, but was relatively modest and seems unlikely to produce significant patient benefit. TRIAL REGISTRATION NUMBER: International Standard Randomized Controlled Trial Number Register ISRCTN43002091.
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Diabetes Mellitus Tipo 2/prevención & control , Hemoglobina Glucada/análisis , Telemedicina , Anciano , Anciano de 80 o más Años , Análisis por Conglomerados , Diabetes Mellitus Tipo 2/sangre , Femenino , Humanos , Masculino , Sistemas de Registros Médicos Computarizados , Persona de Mediana Edad , Resultado del TratamientoRESUMEN
With the advent of improved medical and surgical care in congenital heart disease, there has been an increase in the number of patients who survive into adulthood, giving rise to a new patient population 'Adults with congenital heart disease'. In the past, morbidity and mortality were the primary concerns for this group. However, with improvements in outcome attention has shifted to other factors such as psychosocial and cognitive functioning. This paper reviews the literature on the cognitive functioning in adult congenital heart disease patients. A total of five relevant articles were retrieved via electronic searches of six databases, including MEDLINE, EMBASE, CINAHL, AMED, PsychINFO, and PubMed. The results displayed a consensus on the presence of some cognitive difficulties in adult congenital heart disease patients. The aetiology of cognitive dysfunctions appears to be multifactorial. The literature is limited by the very small number of studies looking at adults with congenital heart disease, with the majority focusing on cognitive functioning among children with congenital heart disease. However, the presence of cognitive dysfunctions and the resulting impact on the patient's day to day lives warrant for a more detailed and prospective research to enhance the understanding of its aetiology and impact.
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Trastornos del Conocimiento/psicología , Cognición , Cardiopatías Congénitas/psicología , Adulto , Trastornos del Conocimiento/complicaciones , Cardiopatías Congénitas/complicaciones , Cardiopatías Congénitas/cirugía , Humanos , Pruebas Neuropsicológicas , Factores de RiesgoRESUMEN
OBJECTIVE: Many patients are satisfied with their ocular prosthesis, but some describe problems with social interactions, body image and self-esteem. Although both clinical practice and research suggest that the severity of a disfiguring condition does not predict distress, there has been little research with patients living with an ocular prosthesis. The objective was to explore the psychological impact of living with an artificial eye or cosmetic shell and determine the relationship between psychological well-being and clinical and psychosocial factors. METHODS: A cross-sectional study between March and September 2008 at the ocular prosthesis clinic of Moorfields Eye Hospital, UK. The primary outcome measures were mood as measured by the Hospital Anxiety and Depression Scale (HADS) and appearance-related social anxiety and social avoidance, as measured by the Derriford Appearance Scale (DAS24). RESULTS: Mean scores on the HADS and DAS24 were within normal range, but a considerable proportion of participants were experiencing significant levels of distress. Psychosocial adjustment was unrelated to most clinical and demographic variables, but was associated with a series of cognitive processes. CONCLUSIONS: Psychological variables, rather than clinical or demographic factors, are associated with how a patient adjusts to wearing an ocular prosthesis. Such factors might be amenable to change through psychosocial intervention.
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Imagen Corporal/psicología , Ojo Artificial/psicología , Relaciones Interpersonales , Implantes Orbitales/psicología , Autoimagen , Adulto , Anciano , Anciano de 80 o más Años , Trastornos de Ansiedad/psicología , Estudios Transversales , Trastorno Depresivo/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida/psicología , Perfil de Impacto de Enfermedad , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Religious/spiritual resources may serve multiple functions in adjustment to cancer. However, there is very little evidence of the importance of religious/spiritual variables outside the USA. This paper reports the cross-sectional data of a longitudinal study examining the beneficial and harmful effects of religious/spiritual coping resources on adjustment in the first year after a breast cancer diagnosis. METHOD: One hundred and fifty-five patients newly diagnosed with breast cancer were assessed after surgery. Several aspects of religiousness/spirituality in relation to anxiety and depression were examined: religiosity/spirituality, strength of faith, belief in God, private and public practices, spiritual involvement, perceived spiritual support and positive and negative religious coping strategies. Non-religious coping, social support and optimism were also assessed. RESULTS: 'Feeling punished and abandoned by God' significantly explained 5% of the variance in increased levels of anxiety but was partially mediated by denial coping. It was also partially mediated by acceptance coping, lowering levels of anxiety. Feeling punished and abandoned by God was a significant independent predictor of depressed mood, explaining 4% of the variance. CONCLUSION: Using religious/spiritual resources in the coping process during the early stages of breast cancer may play an important role in the adjustment process in patients with breast cancer. Patients may benefit from having their spiritual needs addressed as experiencing some form of religious/spiritual struggle may serve as a barrier to illness adjustment. Implications for research and clinical practices are discussed.
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Adaptación Psicológica , Ansiedad/psicología , Neoplasias de la Mama/psicología , Religión y Psicología , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Estudios Longitudinales , Persona de Mediana Edad , Religión y Medicina , Apoyo Social , Espiritualidad , Encuestas y Cuestionarios , Reino UnidoRESUMEN
AIMS: This review explores the quality of life of adult congenital heart disease patients and the relationship between disease severity and quality of life. METHODS: We searched seven electronic databases and the bibliography of articles. The 31 selected studies fulfilled the following criteria: adult population; quantitative; assessment of quality of life and/or impact of disease severity on quality of life using validated measures; English language. Data extraction forms were used to summarise the results. RESULTS: There are evident methodological limitations within the reviewed studies such as heterogeneous populations, designs, and quality of life conceptualisations and measurements. Despite these problems, findings suggest that the quality of life of adult congenital heart disease patients is compromised in the physical domain compared with their healthy counterparts, whereas no differences were found in relation to the psychosocial and environmental/occupational domain. Some severity variables appear to be significant correlates of quality of life and could be considered in a future standardised classification of disease severity. CONCLUSION: The methodological limitations of past research in relation to the definition and measurement of quality of life, the study designs, and disease severity classifications need to be addressed in future studies in order to provide robust evidence and valid conclusions in this area of study. This will enable the development of targeted interventions for the improvement of quality of life in the adult population of congenital heart disease patients.
Asunto(s)
Estado de Salud , Cardiopatías Congénitas/psicología , Calidad de Vida/psicología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Cardiopatías Congénitas/fisiopatología , Humanos , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Adulto JovenRESUMEN
BACKGROUND: Although adherence to immunosupressive medication after transplantation is important to maximize good clinical outcomes it remains suboptimal and not well-understood. The purpose of this study was to examine intentional and unintentional non-adherence to immunosuppression medication in kidney transplant patients. METHODS: A cross-sectional sample of N=218 patients [49.6 ± 12.3 years] recruited in London, UK (1999-2002) completed measures of medication beliefs, quality-of-life, depression, and transplantation-specific emotions. Adherence was measured with self-report and serial immunosuppressive assays. RESULTS: Intentional non-adherence was low (13.8 %) yet 62.4 % admitted unintentional non-adherence and 25.4 % had sub-target immunosuppressive levels. The risk of sub-target serum immunosuppressive levels was greater for patients admitting unintentional non-adherence (OR=8.4; p=0.004). Dialysis vintage, doubts about necessity, and lower worry about viability of graft explained R(2)=16.1 to 36 % of self-report non-adherence. Depression was related only to intentional non-adherence. CONCLUSIONS: Non-adherence is common in kidney transplantation. Efforts to increase adherence should be implemented by targeting necessity beliefs, monitoring depression, and promoting strategies to decrease forgetfulness.
Asunto(s)
Inmunosupresores/uso terapéutico , Intención , Trasplante de Riñón/inmunología , Cumplimiento de la Medicación/psicología , Memoria , Adulto , Anciano , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Conocimiento de la Medicación por el Paciente , Calidad de Vida , AutoinformeAsunto(s)
Procedimientos Quirúrgicos Cardíacos/tendencias , Unidades de Cuidados Intensivos/tendencias , Tiempo de Internación/tendencias , Complicaciones Posoperatorias/diagnóstico , Calidad de Vida , Procedimientos Quirúrgicos Cardíacos/efectos adversos , Procedimientos Quirúrgicos Cardíacos/mortalidad , Humanos , Mortalidad/tendencias , Complicaciones Posoperatorias/etiología , Complicaciones Posoperatorias/mortalidad , Estudios Prospectivos , Estudios RetrospectivosRESUMEN
BACKGROUND: Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial. METHODS: Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes. RESULTS: Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents' views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued. CONCLUSIONS: These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation.