Illness perceptions among carer - survivor dyads are related to psychological distress among Oesophageal cancer survivors

Objective

To examine the extent to which the illness perceptions of Oesophageal cancer survivors and the illness perceptions of their carers explain the survivors' levels of psychological distress (in terms of anxiety and depression symptoms) relative to demographic and biomedical variables and patients' coping strategies.

Method

Everyone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Patients were asked to pass a modified version of the Illness Perception Questionnaire-Revised to someone they identified as a carer. Complete responses were received from 317 dyads.

Results

Regression models indicated that the variables measured could explain 56% of the variance in anxiety and 54% of the variance in depression. Patients' illness perceptions explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological well-being. Some of the carers' illness perceptions made a significant contribution to the explanation of the patients' levels of psychological distress, and in some instances, carer perceptions were found to moderate the relationship between patients' perceptions and psychological distress.

Conclusion

The findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of Oesophageal cancer. This study also shows that these interventions could usefully be delivered at the level of the patient–carer dyad.

Psychological distress among family carers of oesophageal cancer survivors the role of illness cognitions and coping

Objective: The research aimed to determine the extent to which illness cognitions and coping explain psychological distress (fear of cancer recurrence, anxiety and depression symptoms) among family carers of survivors of oesophageal cancer.


Methods: Carers of patients registered with the Oesophageal Patients' Association in the UK were mailed a questionnaire booklet containing questions about medical and demographic variables, the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, the Concerns about Recurrence Scale and the Hospital Anxiety and Depression Scale.


Results: Complete responses were received from 382 family carers (75% male; mean (SD) age=62 (10.91) years). Regression models indicated that the variables measured could explain between 35 and 49% of the variance in psychological distress among carers. Illness cognitions (particularly perceptions of the cause of, consequences of and personal control over oesophageal cancer and the carer's understanding of the condition) explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological distress.


Conclusion: The results of this study are consistent with previous research demonstrating that illness cognitions are significant correlates of adaptive outcomes, thereby suggesting that cognition-based interventions could potentially be effective in minimizing emotional distress among family carers of oesophageal cancer survivors.

Psychological distress among survivors of esophageal cancer: the role of illness cognitions and coping

Leventhal's common sense model has provided a useful framework for explaining psychological distress in several chronic illnesses. The model indicates that a person's perception of their illness and their coping strategies are the key determinants of their experience of psychological distress. The present research examines whether illness perceptions and coping strategies are related to levels of psychological distress among survivors of esophageal cancer. Everyone registered with the Oesophageal Patients' Association in the UK was mailed a questionnaire booklet, which included the Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire, and the Hospital Anxiety and Depression Scale. Complete responses were received from 484 people. Regression models indicated that the variables measured could explain 51% of the variance in anxiety and 42% of the variance in depression. Perceptions of esophageal cancer explained the majority of this variance. Positive focus coping strategies were also found to be important in explaining psychological distress. The results of this study are consistent with previous research demonstrating that illness perceptions are stronger correlates of adaptive outcomes than coping strategies. The findings suggest that cognition-based interventions could potentially be most effective in minimizing emotional distress among survivors of esophageal cancer.

Illness perception clusters at diagnosis predict psychological distress among women with breast cancer at 6 months post-diagnosis.

OBJECTIVE:

This study aimed to examine the extent to which illness perceptions and coping strategies among women diagnosed with breast cancer explain psychological distress at diagnosis and at 6?months post diagnosis relative to demographic and illness-related variables.

METHODS:

Women were recruited to the study shortly after diagnosis. A total of 90 women completed study materials (Illness Perception Questionnaire-Revised, the Cancer Coping Questionnaire and the Hospital Anxiety and Depression Scale) at time 1. The same questionnaires were sent approximately 6?months later to those who had consented at time 1, and completed questionnaires were returned by 72 women.

RESULTS:

Cluster analysis was used to identify groups of respondents who reported a similar profile of illness perception scores. Regression analysis demonstrated that one of these clusters was more likely to experience psychological distress than the other both at diagnosis and at 6?months post diagnosis. Illness perception cluster membership and positive focus type coping were the most important and consistent predictors of lower psychological distress at diagnosis and at 6?months post diagnosis.

CONCLUSIONS:

Illness perceptions remained relatively stable over the study period, and therefore we are unable to clarify whether changes in illness cognitions are associated with a corresponding change in psychological symptoms. Future research should evaluate the impact on psychological distress of interventions specifically designed to modify illness cognitions among women with breast cancer.

Decompressive hemicraniectomy following malignant middle cerebral artery infarctions:a mixed methods exploration of carer experience and level of burden

Purpose: This study explores the experiences and sense of burden of family carers of survivors of malignant middle cerebral artery infarctions who had undergone decompressive hemicraniectomy. To date, there have been no studies examining carer outcomes among this unique population. This study, taken alongside an already published study of survivor outcomes, provides a more holistic picture with regard to sequelae within the sample. Method: Six family carers completed the Sense of Competence Questionnaire and the Hospital Anxiety and Depression Scale. These results were compared with existing normative data. Carers also consented to a semi-structured interview. Interview data were examined using thematic content analysis. Consistent with the mixed methods design, quantitative and qualitative findings were integrated for further analysis. Results: While carers experienced many losses, their overall sense of burden was not outside 'Average' limits, nor did they experience clinically significant symptoms of depression. All carers identified methods of coping with the demands of caregiving. These included intrapersonal, interpersonal and practical strategies. All carers apart from one were able to identify areas of post-traumatic growth. Conclusion: Carers will benefit from information, support and care. In addition, problem solving skills are essential in managing the myriad difficulties that arise in the aftermath of stroke. [Box: see text].

A school based study of psychological disturbance in children following the Omagh bomb

Objective
To assess the extent and nature of psychiatric morbidity among children (aged 8 to 13 years) 15 months after a car bomb explosion in the town of Omagh, Northern Ireland.

Method
A survey was conducted of 1945 school children attending 13 schools in the Omagh district. Questionnaires included demographic details, measures of exposure, the Horowitz Impact of Events Scale, the Birleson Self-Rating Depression Scale, and the Spence Children’s Anxiety Scale.

Results
Children directly exposed to the bomb reported higher levels of probable PTSD (70%), and psychological distress than those not exposed. Direct exposure was more closely associated with an increase in PTSD symptoms than in general psychiatric distress. Significant predictors of increased IES scores included being male, witnessing people injured and reporting a perceived life threat but when co-morbid anxiety and depression are included as potential predictors anxiety remains the only significant predictor of PTSD scores.

Conclusions
School-based studies are a potentially valuable means of screening and assessing for PTSD in children after large-scale tragedies. Assessment should consider type of exposure, perceived life threat and other co-morbid anxiety as risk factors for PTSD.

Adherence to treatment in children and adolescents with cystic fibrosis: a cross-sectional, multi-method study investigating the influence of beliefs about treatment and parental depressive symptoms

BACKGROUND: Adherence to treatment is often reported to be low in children with cystic fibrosis. Adherence in cystic fibrosis is an important research area and more research is needed to better understand family barriers to adherence in order for clinicians to provide appropriate intervention. The aim of this study was to evaluate adherence to enzyme supplements, vitamins and chest physiotherapy in children with cystic fibrosis and to determine if any modifiable risk factors are associated with adherence.

METHODS: A sample of 100 children (≤18 years) with cystic fibrosis (44 male; median [range] 10.1 [0.2-18.6] years) and their parents were recruited to the study from the Northern Ireland Paediatric Cystic Fibrosis Centre. Adherence to enzyme supplements, vitamins and chest physiotherapy was assessed using a multi-method approach including; Medication Adherence Report Scale, pharmacy prescription refill data and general practitioner prescription issue data. Beliefs about treatments were assessed using refined versions of the Beliefs about Medicines Questionnaire-specific. Parental depressive symptoms were assessed using the Center for Epidemiologic Studies Depression Scale.

RESULTS: Using the multi-method approach 72% of children were classified as low-adherers to enzyme supplements, 59% low-adherers to vitamins and 49% low-adherers to chest physiotherapy. Variations in adherence were observed between measurement methods, treatments and respondents. Parental necessity beliefs and child age were significant independent predictors of child adherence to enzyme supplements and chest physiotherapy, but parental depressive symptoms were not found to be predictive of adherence.

CONCLUSIONS: Child age and parental beliefs about treatments should be taken into account by clinicians when addressing adherence at routine clinic appointments. Low adherence is more likely to occur in older children, whereas, better adherence to cystic fibrosis therapies is more likely in children whose parents strongly believe the treatments are necessary. The necessity of treatments should be reinforced regularly to both parents and children.

Higher effort-reward imbalance and lower job control predict exit from the labour market at the age of 61 years or younger: Evidence from the English Longitudinal Study of Ageing

Background: We examined whether higher effort-reward imbalance (ERI) and lower job control are associated with exit from the labour market. 

Methods: There were 1263 participants aged 50-74 years from the English Longitudinal Study on Ageing with data on working status and work-related psychosocial factors at baseline (wave 2; 2004-2005), and working status at follow-up (wave 5; 2010-2011). Psychosocial factors at work were assessed using a short validated version of ERI and job control. An allostatic load index was formed using 13 biological parameters. Depressive symptoms were measured using the Center for Epidemiologic Studies Depression Scale. Exit from the labour market was defined as not working in the labour market when 61 years old or younger in 2010-2011. 

Results: Higher ERI OR=1.62 (95% CI 1.01 to 2.61, p=0.048) predicted exit from the labour market independent of age, sex, education, occupational class, allostatic load and depression. Job control OR=0.60 (95% CI 0.42 to 0.85, p=0.004) was associated with exit from the labour market independent of age, sex, education, occupation and depression. The association of higher effort OR=1.32 (95% CI 1.01 to 1.73, p=0.045) with exit from the labour market was independent of age, sex and depression but attenuated to non-significance when additionally controlling for socioeconomic measures. Reward was not related to exit from the labour market. 

Conclusions: Stressful work conditions can be a risk for exiting the labour market before the age of 61 years. Neither socioeconomic position nor allostatic load and depressive symptoms seem to explain this association.

Change in psychological distress in longer-term oesophageal cancer carers: are clusters of illness perception change a useful determinant?

Objective: This study provides a longitudinal assessment of distress in longer-term oesophageal cancer carers, while examining illness perception schema as a possible determinant of change in distress over time.
Methods: Oesophageal cancer carers (n=171), 48-months post-diagnosis, were assessed at baseline and 12-months later with the Illness Perception Questionnaire-Revised, Cancer Coping Questionnaire, Hospital Anxiety and Depression Scale and Concerns About Recurrence Scale.
Results: Findings report deterioration from normal to probable anxiety in 35.7% of carers and probable depression in 28.7% carers over time. Fear of recurrence remained stable. Changes in control, consequence and cause beliefs were identified as key determinants of a change in psychological morbidity.
Conclusions: Illness beliefs appear to be valuable targets for psychological intervention to improve wellbeing among carers of people with oesophageal cancer.

A terapia de grupo na doença oncológica

Existem milhões de sobreviventes de cancro da mama no mundo, em exponencial crescimento. Esta população pode apresentar preocupações relevantes acerca do futuro, depressão, ansiedade, sintomas pós-traumáticos, e comprometimento da qualidade de vida. As intervenções de grupo breves, estruturadas, especialmente as que incluem estratégias cognitivo-comportamentais, têm sido indicadas para esta população. O presente trabalho surge neste contexto, em que os estudos são escassos, especialmente em Portugal. Um conjunto de 5 estudos foi conduzido com o intuito de avaliar a eficácia de dois programas de intervenção de grupo breves e estruturadas de inspiração cognitivo-comportamental, um de tipo psicopedagógico e outro de terapia cognitivo-comportamental, em sobreviventes de cancro da mama. Nos primeiros dois estudos procedeu-se ao estudo das caraterísticas psicométricas de dois instrumentos de avaliação, o Questionário de Formas de Lidar com o Cancro (CCQ) e o Questionário de Saúde do Paciente (PHQ-9).Os dois estudos seguintes referem-se ao desenvolvimento dos programas de intervenção de grupo, acompanhados dos resultados preliminares. No último estudo avaliou-se a eficácia dos dois programas de intervenção na promoção do ajustamento psicossocial de 62 sobreviventes de cancro da mama, num estudo quasi-experimental, com pré e pós-testes e duas avaliações de seguimento (3 e 6 meses após a intervenção). Foram utilizados os seguintes instrumentos de avaliação: o CCQ; o PHQ-9; a Escala de Controlo Emocional (CEC); a Escala de Ansiedade e Depressão Hospitalar (EADH); o questionário de qualidade de vida da Organização Europeia de Investigação e Tratamento de Cancro com o módulo suplementar de cancro da mama (EORTC QLQ-C30 e BR-23); o Inventário Clínico de Autoconceito (ICAC); o Teste de Orientação de Vida - Revisto (TOV-R); o Perfil dos Estados de Humor (POMS); a Subescala de Crescimento Pessoal da Escala de Bem-Estar Psicológico (EBEP); a sub-escala de espiritualidade e o Inventário de estado-traço de ansiedade (STAI). Resultados: As sobreviventes que não tiveram intervenção apresentaram deterioração de dois domínios da qualidade de vida, a função cognitiva e a dor, para além de piores resultados na subescala de vigor. A deterioração dos domínios da qualidade de vida manteve-se aos 3 meses e extendeu-se aos sintomas da mama, o que não se verificou com o vigor. O grupo com intervenção psicoeducativa apresentou melhoria do autoconceito até aos 6 meses. Neste grupo também se observou um aumento do controlo emocional até aos 3 meses. O grupo de terapia cognitivo-comportamental apresentou aumento do estado de ansiedade e diminuição do funcionamento de papel no final da intervenção, diminuição do funcionamento emocional aos 3 meses e aumento na hostilidade e na confusão aos 6 meses. Ambos os grupos com intervenção apresentaram diminuição do traço de ansiedade aos 6 meses. Foram encontradas diversas correlações significativas destes efeitos com variáveis demográficas, clínicas e psicossociais. Conclusão: As intervenções de grupo breves, de inspiração cognitivo-comportamental, mostraram contribuir para a redução do traço de ansiedade a longo prazo e para a manutenção da função cognitiva, da dor, do vigor, e dos sintomas da mama nas sobreviventes. O programa psicopedagógico parece ser mais indicado para as sobreviventes, pelos efeitos no autoconceito, com maior extensão a longo prazo. São referidas implicações para a prática clínica e para a promoção da saúde mental desta população.

The impact of communication disability on quality of life of people with aphasia and their caregivers

Aphasia is a chronic acquired communication disorder that may change people with aphasia (PWA) and their caregivers’ lives for ever. Social and emotional changes are frequently reported by both, although the impact of these changes in quality of life (QOL) needs further research. This study identifies predictors and variables that influence PWA’s and their caregivers’ QOL and social relationships (SR). A cross-sectional descriptive, correlational and comparative study was undertaken with 255 individuals from Portuguese general population (mean age 43 years, range 25-84 years; 148 females, 107 males), 25 PWA (mean age 54 years, range 20-71; 12 females and 13 males), and 25 caregivers (mean age 51 years, range 26-73; 17 females and 8 males). All the participants completed the World Health Quality of Life Bref instrument, the SR domain of the World Health Organization Quality of Life – 100 scale, and the Center for Epidemiologic Studies Depression Scale. Participants with aphasia completed the Lisbon Aphasia Assessment Battery, Barthel Index, Frenchay Activities Index, Communication Disability Profile and the Modified Mini-Mental State which evaluated language disability, aphasia coefficient, activities, participation and cognition. In addition, caregivers completed the Carers’ Assessment of Managing Index to assess coping strategies. PWA and their caregivers are less satisfied with their QOL and SR than Portuguese general population; whereas PWA have the worse QOL and SR. Thus, aphasia seems to impact negatively in their QOL and SR. Emotional status has great importance for QOL and SR among the three groups. PWA’s activities and participation have great impact in both PWA’s and caregivers’ QOL and SR. Additionally, emotional status and participation are the best predictors of PWA’s QOL. Along with these two variables, activities of the PWA are the best predictors of caregivers’ QOL. Participation is the best predictor of PWA’s SR; emotional status and number of cohabitants are best predictors for caregivers’ SR. Aphasia assessment and intervention should take into account all the factors that influence PWA’s and caregivers’ QOL and SR so the central goal of enhancing it can be achieved. These results are important for identifying and planning support needs and are useful in the orientation of the activities carried out by the service providers allowing the adjustment of health programs and policies based on people’s real life needs.

Alcohol gel ingestion amongst homeless Eastern and Central Europeans in London: assessing the effects on cognitive functioning and psychological health

Background: Intentional consumption of alcohol based hand gels has been reported especially amongst non-UK national, alcohol dependent, homeless individuals in London. Whilst alcohol misuse is known to be associated with impaired cognitive functioning and mental health problems, the effects of additional ingestion of alcohol gel are unknown. Objectives: To explore cognitive and psychological functioning in users who intentionally ingest alcohol gel compared with ethyl-alcohol only misusers and controls. Methods: Male, Central and Eastern European alcohol only misusers, (n=14; mean age 39 years), alcohol gel users (n=14; mean age 43 years) and controls (n=12; mean age 31 years) were recruited from a London Homeless Service during 2013/14. Alcohol misusers, alcohol gel users and controls were compared on the Forwards and Backwards Digit Span Test; Block Design test; Retrospective and Prospective Memory Questionnaire (PRMQ) and the Hospital and Anxiety Depression Scale (HADS). Results: Alcohol gel users performed significantly worse on the Block Design task (p<0.01) and PRMQ (p<0.01) relative to both alcohol only and control groups, and significantly worse on the digit span relative to controls (p=0.01). Both alcohol misusing groups scored comparatively on digit span backwards (p<0.01), with both groups performing significantly worse than controls. The alcohol gel group reported significantly higher levels of anxiety relative to controls (p=0.02). Conclusions: Whilst there could be constitutional differences between alcohol misusers who additionally abuse alcohol gel, the findings suggest that alcohol gel ingestion may have a greater impact on psychological functioning than traditional alcohol misuse.

Global geriatric evaluation of the Algarve population

The ageing of population challenges communities to adapt and evolve to accommodate the needs of people that live longer (mostly out of work, either healthy, fragile or with chronic disease). Population ageing in the Algarve is higher than in overall Portugal. Studies on health conditions, frailty risk factors and elderly specific needs are undeveloped in Portugal and unknown in the Algarve. Objective To prepare a tool for Global Geriatric Evaluation, to be used in the “Survey of Health and Ageing in the Region of Algarve - SHARA”, a commitment to “European Innovation Partnership on Active and Healthy Ageing”. Methods A preliminary version of the screening tool, which includes well-known instruments to measure health condition (EASY-care), risk of fall (Tinetty), physical activity (Baecke’s modified questionnaire), nutritional condition (MNA), cognitive and depressive status (MMSE, Yesavage geriatric depression scale), together with socio-demographic characteristics, was applied to an independent sample of subjects from an elderly community centre - ARPI (“Associação de Reformados, Pensionistas e Idosos do Concelho de Faro”), with ages between 55 and 89. Results ARPI is mostly frequented by women, who either have risk of malnutrition or malnutrition incidence, a relevant risk of fall or are physically active. Those who live alone, show a higher risk of fall. Conclusions ARPI members are active, but with risk of malnutrition and fall, suggesting the relevance and importance of future interventions in these areas. The proposed screening tool showed to be adequate for the SHARA study, suitable to provide wider information on frailty.

Avaliação dos níveis de ansiedade e depressão e sua correlação com a intensidade de dor em doentes oncológicos com doença avançada e progressiva

Tese de mestrado, Cuidados Paliativos, Faculdade de Medicina, Universidade de Lisboa, 2015

Quality of Life Predictors and Normative Data

This study identifies predictors and normative data for quality of life (QOL) in a sample of Portuguese adults from general population. A cross-sectional correlational study was undertaken with two hundred and fifty-five (N = 255) individuals from Portuguese general population (mean age 43 years, range 25–84 years; 148 females, 107 males). Participants completed the European Portuguese version of the World Health Organization Quality of Life short-form instrument and the European Portuguese version of the Center for Epidemiologic Studies Depression Scale. Demographic information was also collected. 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. 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 and can be helpful for researchers and practitioners using this assessment tool to compare their results with normative data