Validation of the English version of the Scale for Psychosocial Factors in Food Allergy and the relationship with mental health, quality of life, and self-efficacy

Background. The Scale for Psychosocial Factors in Food Allergy (SPS-FA) is based on the biopsychosocial model of health and was developed and validated in Chile to measure the interaction between psychological variables and allergy symptoms in the child. We sought to validate this scale in an English speaking population and explore its relationship with parental quality of life, self-efficacy, and mental health. Methods. Parents (n = 434) from the general population in the UK, who had a child with a clinical diagnosis of food allergy, completed the SPS-FA and validated scales on food allergy specific parental quality of life (QoL), parental self-efficacy, and general mental health. Findings. The SPS-FA had good internal consistency (alphas = .61-.86). Higher scores on the SPS-FA significantly correlated with poorer parental QoL, self-efficacy, and mental health. All predictors explained 57% of the variance in SPS-FA scores with QoL as the biggest predictor (β = .52). Discussion. The SPS-FA is a valid scale for use in the UK and provides a holistic view of the impact of food allergy on the family. In conjunction with health-related QoL measures, it can be used by health care practitioners to target care for patients and evaluate psychological interventions for improvement of food allergy management.

Virtual reality rehabilitation as a treatment approach for older women with mixed urinary incontinence : a feasibility study

Background Motivated patients are more likely to adhere to treatment resulting in better outcomes. Virtual reality rehabilitation (VRR) is a treatment approach that includes video gaming to enhance motivation and functional training. Aims The study objectives were (1) to evaluate the feasibility of using a combination of pelvic floor muscles (PFM) exercises and VRR (PFM/VRR) to treat mixed urinary incontinence (MUI) in older women, (2) to evaluate the effectiveness of the PFM/VRR program on MUI symptoms, quality of life (QoL), and (3) gather quantitative information regarding patient satisfaction with this new combined training program. Methods Women 65 years and older with at least 2 weekly episodes of MUI were recruited. Participants were evaluated two times before and one time after a 12-week PFM/VRR training program. Feasibility was defined as the participants' rate of participation in and completion of both the PFM/VRR training program and the home exercise. Effectiveness was evaluated through a bladder diary, pad test, symptom and QoL questionnaire, and participant's satisfaction through a questionnaire. Results Twenty-four women (70.5 ± 3.6 years) participated. The participants complied with the study demands in terms of attendance at the weekly treatment sessions (91%), adherence to home exercise (92%) and completion of the three evaluations (96%). Post-intervention, the frequency and quantity of urine leakage decreased and patientreported symptoms and QoL improved significantly. Most participants were very satisfied with treatment (91%). Conclusion A combined PFM/VRR program is an acceptable, efficient, and satisfying functional treatment for older women with MUI and should be explore through further RCTs.

Longitudinal evaluation of quality of life in 288 patients with Neurofibromatosis 2

Advances in molecular biology have resulted in novel therapy for neurofibromatosis 2-related (NF2) tumours, highlighting the need for robust outcome measures. The disease-focused NF2 impact on quality of life (NFTI-QOL) patient questionnaire was assessed as an outcome measure for treatment in a multi-centre study. NFTI-QOL was related to clinician-rated severity (ClinSev) and genetic severity (GenSev) over repeated visits. Data were evaluated for 288 NF2 patients (n = 464 visits) attending the English national NF2 clinics from 2010 to 2012. The male-to-female ratio was equal and the mean age was 42.2 (SD 17.8) years. The analysis included NFTI-QOL eight-item score, ClinSev graded as mild, moderate, or severe, and GenSev as a rank order of the number of NF2 mutations (graded as mild, moderate, severe). The mean (SD) 8.7 (5.4) score for NFTI-QOL for either a first visit or all visits 9.2 (5.4) was similar to the published norm of 9.4 (5.5), with no significant relationships with age or gender. NFTI-QOL internal reliability was good, with a Cronbach’s alpha score of 0.85 and test re-test reliability r = 0.84. NFTI related to ClinSev (r = 0.41, p < 0.001; r = 0.46 for all visits), but weakly to GenSev (r = 0.16, p < 0.05; r = 0.15 for all visits). ClinSev related to GenSev (r = 0.41, p < 0.001; r = 0.42 for all visits). NFTI-QOL showed a good reliability and ability to detect significant longitudinal changes in the QOL of individuals. The moderate relationships of NFTI-QOL with clinician- and genetic-rated severity suggest that NFTI-QOL taps into NF2 patient experiences that are not encompassed by ClinSev rating or genotype.

Patient-reported quality-of-life analysis of radium-223 dichloride from the phase III ALSYMPCA study

BACKGROUND: Radium-223 dichloride (radium-223), a first-in-class α-emitting radiopharmaceutical, is recommended in both pre- and post-docetaxel settings in patients with castration-resistant prostate cancer (CRPC) and symptomatic bone metastases based on overall survival benefit demonstrated in the phase III ALSYMPCA study. ALSYMPCA included prospective measurements of health-related quality of life (QOL) using two validated instruments: the general EuroQoL 5D (EQ-5D) and the disease-specific Functional Assessment of Cancer Therapy-Prostate (FACT-P).

PATIENTS AND METHODS: Analyses were conducted to determine treatment effects of radium-223 plus standard of care (SOC) versus placebo plus SOC on QOL using FACT-P and EQ-5D. Outcomes assessed were percentage of patients experiencing improvement, percentage of patients experiencing worsening, and mean QOL scores during the study.

RESULTS: Analyses were carried out on the intent-to-treat population of patients randomized to receive radium-223 (n = 614) or placebo (n = 307). The mean baseline EQ-5D utility and FACT-P total scores were similar between treatment groups. A significantly higher percentage of patients receiving radium-223 experienced meaningful improvement in EQ-5D utility score on treatment versus placebo {29.2% versus 18.5%, respectively; P = 0.004; odds ratio (OR) = 1.82 [95% confidence interval (CI) 1.21-2.74]}. Findings were similar for FACT-P total score [24.6% versus 16.1%, respectively; P = 0.020; OR = 1.70 (95% CI 1.08-2.65)]. A lower percentage of patients receiving radium-223 experienced meaningful worsening versus placebo measured by EQ-5D utility score and FACT-P total score. Prior docetaxel use and current bisphosphonate use did not affect these findings. Treatment was a significant predictor of EQ-5D utility score, with radium-223 associated with higher scores versus placebo (0.56 versus 0.50, respectively; P = 0.002). Findings were similar for FACT-P total score (99.08 versus 95.22, respectively; P = 0.004).

CONCLUSIONS: QOL data from ALSYMPCA demonstrated that improved survival with radium-223 is accompanied by significant QOL benefits, including a higher percentage of patients with meaningful QOL improvement and a slower decline in QOL over time in patients with CRPC.

Non-pharmacological interventions for cognitive impairment due to systemic cancer treatment (Review)

Background

It is estimated that up to 75% of cancer survivors may experience cognitive impairment as a result of cancer treatment and given the increasing size of the cancer survivor population, the number of affected people is set to rise considerably in coming years. There is a need, therefore, to identify effective, non-pharmacological interventions for maintaining cognitive function or ameliorating cognitive impairment among people with a previous cancer diagnosis.
Objectives

To evaluate the cognitive effects, non-cognitive effects, duration and safety of non-pharmacological interventions among cancer patients targeted at maintaining cognitive function or ameliorating cognitive impairment as a result of cancer or receipt of systemic cancer treatment (i.e. chemotherapy or hormonal therapies in isolation or combination with other treatments).
Search methods

We searched the Cochrane Centre Register of Controlled Trials (CENTRAL), MEDLINE, Embase, PUBMED, Cumulative Index of Nursing and Allied Health Literature (CINAHL) and PsycINFO databases. We also searched registries of ongoing trials and grey literature including theses, dissertations and conference proceedings. Searches were conducted for articles published from 1980 to 29 September 2015.
Selection criteria

Randomised controlled trials (RCTs) of non-pharmacological interventions to improve cognitive impairment or to maintain cognitive functioning among survivors of adult-onset cancers who have completed systemic cancer therapy (in isolation or combination with other treatments) were eligible. Studies among individuals continuing to receive hormonal therapy were included. We excluded interventions targeted at cancer survivors with central nervous system (CNS) tumours or metastases, non-melanoma skin cancer or those who had received cranial radiation or, were from nursing or care home settings. Language restrictions were not applied.
Data collection and analysis

Author pairs independently screened, selected, extracted data and rated the risk of bias of studies. We were unable to conduct planned meta-analyses due to heterogeneity in the type of interventions and outcomes, with the exception of compensatory strategy training interventions for which we pooled data for mental and physical well-being outcomes. We report a narrative synthesis of intervention effectiveness for other outcomes.
Main results

Five RCTs describing six interventions (comprising a total of 235 participants) met the eligibility criteria for the review. Two trials of computer-assisted cognitive training interventions (n = 100), two of compensatory strategy training interventions (n = 95), one of meditation (n = 47) and one of physical activity intervention (n = 19) were identified. Each study focused on breast cancer survivors. All five studies were rated as having a high risk of bias. Data for our primary outcome of interest, cognitive function were not amenable to being pooled statistically. Cognitive training demonstrated beneficial effects on objectively assessed cognitive function (including processing speed, executive functions, cognitive flexibility, language, delayed- and immediate- memory), subjectively reported cognitive function and mental well-being. Compensatory strategy training demonstrated improvements on objectively assessed delayed-, immediate- and verbal-memory, self-reported cognitive function and spiritual quality of life (QoL). The meta-analyses of two RCTs (95 participants) did not show a beneficial effect from compensatory strategy training on physical well-being immediately (standardised mean difference (SMD) 0.12, 95% confidence interval (CI) -0.59 to 0.83; I2= 67%) or two months post-intervention (SMD - 0.21, 95% CI -0.89 to 0.47; I2 = 63%) or on mental well-being two months post-intervention (SMD -0.38, 95% CI -1.10 to 0.34; I2 = 67%). Lower mental well-being immediately post-intervention appeared to be observed in patients who received compensatory strategy training compared to wait-list controls (SMD -0.57, 95% CI -0.98 to -0.16; I2 = 0%). We assessed the assembled studies using GRADE for physical and mental health outcomes and this evidence was rated to be low quality and, therefore findings should be interpreted with caution. Evidence for physical activity and meditation interventions on cognitive outcomes is unclear.
Authors' conclusions

Overall, the, albeit low-quality evidence may be interpreted to suggest that non-pharmacological interventions may have the potential to reduce the risk of, or ameliorate, cognitive impairment following systemic cancer treatment. Larger, multi-site studies including an appropriate, active attentional control group, as well as consideration of functional outcomes (e.g. activities of daily living) are required in order to come to firmer conclusions about the benefits or otherwise of this intervention approach. There is also a need to conduct research into cognitive impairment among cancer patient groups other than women with breast cancer.

Aspectos da qualidade de vida de pacientes com coinfecção HIV/tuberculose

Investigar a qualidade de vida de pacientes com coinfecção HIV/ tuberculose e apreender as mudanças impostas para viver simultaneamente com estas doenças transmissíveis. Métodos: Pesquisa com abordagem qualiquantitativa, realizada em ambulatório especializado em Fortaleza, Brasil, entre 2009 e 2010, com 34 coinfectados. Para coleta de dados foi utilizada uma escala de qualidade de vida, denominada HAT-QoL que possui 42 itens e questões abertas para possibilitar perceber as mudanças em face das doenças. Resultados: A maioria dos participantes tinha tuberculose na forma pulmonar, eram homens, com pouca escolaridade. A qualidade de vida mostrou-se prejudicada nos domínios relacionados às questões econômicas, sexuais e de sigilo. Ainda, foi evidenciado, que a coinfecção impõe mudanças no cotidiano que corroboram e ampliam o comprometimento da qualidade de vida. Conclusão: Vivenciar a coinfecção, mesmo com terapêutica adequada, produz alterações na vida dos infectados, cujas repercussões podem ser amenizadas com intervenções que promovam a saúde

Quality of life predictors and normative data

Purpose: Identify predictors and normative data for quality of life (QOL) in a sample of Portuguese adults from general population Methods: A cross-sectional correlational study was undertaken with two hundred and fifty-five (N=255) individuals from Portuguese general population (mean age 43yrs, range 25-84yrs; 148 females, 107 males). Participants completed the European Portuguese version of the World Health Organization Quality of Life short-form instrument (WHOQOL-Bref) and the European Portuguese version of the Center for Epidemiologic Studies Depression Scale (CES-D). Demographic information was also collected. Results: Portuguese adults reported their QOL as good. The physical, psychological and environmental domains predicted 44% of the variance of QOL. The strongest predictor was the physical domain and the weakest was social relationships. Age, educational level, socioeconomic status and emotional status were significantly correlated with QOL and explained 25% of the variance of QOL. The strongest predictor of QOL was emotional status followed by education and age. QOL was significantly different according to: marital status; living place (mainland or islands); type of cohabitants; occupation; health. Conclusions: The sample of adults from general Portuguese population reported high levels of QOL. The life domain that better explained QOL was the physical domain. Among other variables, emotional status best predicted QOL. Further variables influenced overall QOL. These findings inform our understanding on adults from Portuguese general population QOL

Health-related quality of life in portuguese SLE patients: an outcome measure independent of disease activity and cumulative damage

PURPOSE: To evaluate quality of life in Portuguese patients with Systemic Lupus Erithematosus (SLE) and its correlation with disease activity and cumulative damage. METHODS: We included consecutive SLE patients, fulfilling the 1997 ACR Classification Criteria for SLE and followed at the Rheumatology Department of the University Hospital of Coimbra, Portugal at time of visit to the outpatient clinic. Quality of life was evaluated using the patient self-assessment questionnaire Medical Outcomes Survey Short Form-36 (SF-36) (validated Portuguese version). The consulting rheumatologist fulfilled the SLE associated indexes for cumulative damage (Systemic Lupus International Collaborating Clinics- Damage Index: SLICC/ACR-DI) and disease activity (Systemic Lupus Erythematosus Disease Activity Index: SLEDAI 2000). Correlation between SLEDAI and SLICC and SF-36 was tested with the Spearman Coefficient. Significant level considered was 0.05. RESULTS: The study included 133 SLE patients (90.2% female, mean age - 40.7 years, mean disease duration - 8.7 years). Most patients presented low disease activity (mean SLEDAI = 4.23) and limited cumulative damage (mean SLICC = 0.76). Despite that, SF-36 mean scores were below 70% in all eight domains of the index. Physical function domains showed lower scores than mental function domains. The QoL in this group of patients is significantly impaired when compared with the reference Portuguese population (p<0.05 in all domains). There was no correlation between clinical activity or cumulative damage and quality of life. CONCLUSION: QoL is significantly compromised in this group of SLE patients, but not related with disease activity or damage. These findings suggest that disease activity, cumulative damage and QoL are independent outcome measures and should all be used to assess the full impact of disease in SLE patients.

Diet therapy with fodmaps restriction has benefits in fibromyalgia

The effects of a diet restriction in FODMAPs (Fermentable oligo-di-monosaccharides polyols) is being studied on the symptoms of Fibromyalgia (FM) and its impact on quality of life (QOL) besides the effect on gastrointestinal (GI) symptoms. High prevalence of functional GI disorders is found in FM and Low FODMAP Diet has growing scientific evidence as IBS (Irritable Bowel Syndrome) therapy.

Health-related quality of life: implications for critical care interventional studies and why we need to collaborate with patients.

Purpose of review: Health-related quality of life (HRQoL) is an important patient-reported outcome measure following critical illness. ‘Validated’ and professionally endorsed generic measures are widely used to evaluate critical care intervention and guide practice, policy and research. Although recognizing that they are ‘here to stay’, leading QoL researchers are beginning to question their ‘fitness for purpose’. It is therefore timely to review critiques of their limitations in the wider healthcare and social science literatures and to examine the implications for critical care research including, in particular, emerging interventional studies in which HRQoL is the primary outcome of interest. Recent findings: Generic HRQoL measures have provided important yet limited insights into HRQoL among survivors of critical illness. They are rarely developed or validated in collaboration with patients and cannot therefore be assumed to reflect their experiences and perspectives. Summary: Collaboration with patients is advocated in order to improve the interpretation and utility of such data. Failure to do so may result in important study effects being overlooked and the dismissal of potentially useful interventions.

Turystyka i rekreacja a jakość życia mieszkańców Leszna

The quality of life (QOL) is currently one of the main fields of study for researchers around the world. Its complex nature makes it a topic of interest for many different fields, such as philosophy, ethics, medicine, economics, sociology and physical culture sciences. Despite the differences in the way various researches define the QOL, the general agreement is that any measurement of QOL should encompass the following dimensions: objective QOL and subjective QOL (well-being). Particularly noteworthy, for any complex research is the mutual relationship between the QOL and tourism and recreation. The increase of tourism and recreation should entail a simultaneous development of local communities, as emphasized by Crouch and Ritchie this implies that the inhabitants of an area that serves a function of tourism and recreation should profit from the increased number of tourists. This benefits should be reflected in the objective QOL conditions and the subjective sense of satisfaction of the residents. The city of Leszno and it’s tourism and recreation-oriented development strategy were used to form a basis for theoretical study on QOL and to calculate the Tourism-Recreation QOL Index.

QUALIDADE DE VIDA DE PROFESSORAS DO ENSINO BÁSICO DA REDE PÚBLICA

Objetivo: Avaliar os aspectos associados à qualidade de vida (QV) de professoras do ensino básico da rede pública de Viçosa-MG, buscando relações com a classe econômica. Métodos: Trata-se de um estudo descritivo transversal, desenvolvido entre março e outubro de 2013, realizado com 156 professoras da cidade de Viçosa-MG. Foram aplicados os questionários World Health Organization Quality of Life/BREF e o Critério de Classificação Econômica. Utilizou-se também um questionário contendo tempo de atuação e carga horária semanal de trabalho. Para comparação dos domínios da QV entre as classes econômicas, utilizou-se o teste ANOVA one way, com post hoc de Tukey. Para todos os tratamentos, adotou-se um nível de significância de p<0,05. Resultados: As avaliadas apresentaram idade média de 43,88 (+ 10,61) anos, carga horária de trabalho semanal de 29,00 (+ 10,35) horas e tempo de atuação profissional de 16,17 (+ 8,91) anos. A maioria das avaliadas se encontrava na classe econômica B1/B2, com 60,3%. O escore médio da QV geral foi de 68,43 (+ 11,69) pontos, com maiores valores para os domínios “relações sociais” e “físico”. Foi encontrada uma redução na média do domínio “meio ambiente” em relação à menor classe econômica (p=0,011). Houve correlação fraca e inversa entre o domínio “relações sociais” e a carga horária semanal de trabalho (r=-0,16; p=0,031). Conclusão: A QV da população estudada foi considerada entre regular e boa, levando-se em conta a escala do protocolo. Houve associação somente entre o domínio “meio ambiente” e a classe econômica.

Aspectos da qualidade de vida de pacientes com coinfecção HIV/tuberculose

Investigar a qualidade de vida de pacientes com coinfecção HIV/ tuberculose e apreender as mudanças impostas para viver simultaneamente com estas doenças transmissíveis. Métodos: Pesquisa com abordagem qualiquantitativa, realizada em ambulatório especializado em Fortaleza, Brasil, entre 2009 e 2010, com 34 coinfectados. Para coleta de dados foi utilizada uma escala de qualidade de vida, denominada HAT-QoL que possui 42 itens e questões abertas para possibilitar perceber as mudanças em face das doenças. Resultados: A maioria dos participantes tinha tuberculose na forma pulmonar, eram homens, com pouca escolaridade. A qualidade de vida mostrou-se prejudicada nos domínios relacionados às questões econômicas, sexuais e de sigilo. Ainda, foi evidenciado, que a coinfecção impõe mudanças no cotidiano que corroboram e ampliam o comprometimento da qualidade de vida. Conclusão: Vivenciar a coinfecção, mesmo com terapêutica adequada, produz alterações na vida dos infectados, cujas repercussões podem ser amenizadas com intervenções que promovam a saúde

Sex differences in quality of life in stroke survivors. Data from the Tinzaparin in Acute Ischaemic Stroke Trial (TAIST)

Introduction: Female sex is predictive of poor functional outcome in stroke, even after correction for prognostic factors. Poor quality of life (QoL) is observed in stroke survivors, with lower scores seen in the most disabled patients. We used data from the TAIST trial to assess the relationship between sex and QoL after ischaemic stroke. Methods: TAIST was a randomised controlled trial assessing the safety and efficacy of tinzaparin versus aspirin in 1,484 patients with acute ischaemic stroke. QoL was measured at 180 days post randomisation using the short-form 36 health survey which assesses QoL across eight domains. The relationship between sex and each domain was assessed using ordinal regression, both unadjusted and adjusted for key prognostics factors. Results: Of the 1,484 patients randomised into TAIST, 216 had died at 180 days post randomisation. 1,268 survivors were included in this analysis, 694 males (55%), 574 females (45%). Females tended to score lower than males across all QoL domains (apart from general health); statistically significant lower scores were seen for physical functioning (odds ratio (OR) 0.58, 95% confidence interval (CI) 0.47-0.72), vitality (OR 0.79, 95% CI 0.64-0.98) and mental health (OR 0.75, 95% CI 0.61-0.93). The results for physical functioning and mental health remained significant after adjustment for prognostic variables (OR 0.73, 95% CI 0.58-0.92; OR 0.76, 95% CI 0.60-0.95 respectively). Conclusions: QoL, in particular physical function and mental health domains, is lower in female patients after stroke. This difference persists even after correction for known prognostic factors such as age and stroke severity.

PULMONARY REHABILITATION PROGRAMS IN LUNG TRANSPLANT: A LITERATURE REVIEW

Objective: To analyze, using a literature review, Pulmonary Rehabilitation (RP) Programs in lung transplant. Methods: A literature review in July 2014 in Ebsco Host, Periódicos Capes, BVS and Science Direct data bases using descriptors in English (“lung transplantation”, “lung transplant” AND/OR “rehabilitation”) and Portuguese (“reabilitação” AND/OR “transplante pulmonar”). The eligibility criterions were interventional studies of PR before and/or after lung transplant; participants who were candidates to lung transplant or lung transplant recipients; studies that applied any kind of PR program (hospital-based, homebased or outpatient) and articles published in English, Spanish or Portuguese. Literature reviews, guidelines and case reports were excluded. The search process yielded 46 articles of which two were duplicated. After title and abstract screening 13 articles remained for full text reading. Six studies met the inclusion eligibility and were included in the review. Results: The studies involved patients with Chronic Obstructive Pulmonary Disease, Cystic Fibrosis, Pulmonary Hypertension, Interstitial Lung Disease and Pulmonary Fibrosis. Pulmonary function, exercise capacity, quality of life (QoL) and quadriceps force were evaluated. Most interventions were outpatient programs with three months duration, three times a week and session with at least one hour. Protocols included physical training, educational approach and just one included nutritional, psychiatric and social assistant follow-up. The studies presented significant change in the six-minute walking distance, QoL and quadriceps force after PR programs. Conclusion: This review showed the benefits of the PR in the QoL and exercise capacity contributing to the Health Promotion of the patients.