TIDES-CF Study: Who participates in psychosocial trials?

2020

Background: Depression and anxiety symptoms in patients with cystic fibrosis (CF) and their caregivers are 2-3 times higher than in the normal population. This study aims to evaluate the frequency and severity of depression and anxiety symptoms and to determine possible risk factors in CF patients and their mother and/or fathers at Marmara University CF center. Methods: The study included 132 CF patients who were followed up at our CF center. Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder Questionnaire (GAD-7) were used to screen depression and anxiety. The questionnaires were completed by 50 CF patients (aged 12-17 years) and 132 parents of patients (aged 0-17 years). Results: While moderate to severe depression were seen in 25.5% of patients, 33.7% of mothers and 14.6% of fathers; moderate to severe anxiety were present in 17.6%, 21.8% and 8.5%, respectively. None of the demographic characteristics was identified as a predictor of depression or anxiety. GAD-7 scores have shown a higher incidence of anxiety in mothers of patients with chronic methicillin-resistant Staphylococcus Aureus (p = 0.034). Additionally, hospitalization in the last 12 months was statistically significantly higher in PHQ-9 scores of fathers (p = 0.043). Analysis of patients' adherence to medical treatment and airway clearance showed higher depression and anxiety in mothers of the non-adherent group (p = 0.002). Conclusion: Depression and anxiety were common in CF patients and their parents. These results illustrate the importance of depression/anxiety screening and psychosocial support for the CF patient and their parents.

Pediatric Pulmonology, 2019

Background: Many psychological factors contribute to an increased risk of depression in children and adolescents with cystic fibrosis (CF). This study aims to evaluate coexisting psychiatric disorders, perceived social support, and quality of life (QoL) in Turkish children with CF and compare these factors with those of a control group. Methods: The study group consisted of 32 children (8-16 years of age) with CF and a group of 33 age-and sex-matched control children. All subjects completed the Children's Depression Inventory (CDI), Screen for Child Anxiety and Related Disorders (SCARED), Social Support Appraisals Scale, and Pediatric Quality of Life Questionnaire. Psychiatric diagnoses were established using the Kiddie Schedule for Affective Disorders and Schizophrenia-Present and Lifetime Version. Results: Of the children with CF, 80% of those in the 8 to 11 years age range and 50% of those in the 12 to 17 years age range had at least one psychiatric disorder, that is, 68% of the 33 children with CF had at least one psychiatric disorder. Anxiety disorder (46.8%) and attention deficit and hyperactivity disorder (21.8%) were also common among children with CF. The rates of depression in the CF group and control group were 21.9% and 6.1%, respectively (P > .05). The CF subjects with coexisting depression exhibited higher levels of disease severity, longer periods of hospitalization, and more frequent anxiety disorder. When compared with the control group, the QoL among the Turkish children with CF was lower (P < .05). The CDI and SCARED are relatively sensitive and specific screening tools for depression and anxiety in children with CF. Conclusions: Psychiatric disorders were more frequently found in children and adolescents with CF. By examining symptoms of anxiety and depression and by using screening tools, CF patients who exhibit symptoms of psychiatric disorders can be better identified and evaluated.

Pediatric Pulmonology, 2011

Thorax, 2014

Individuals with chronic diseases and parent caregivers are at increased risk for symptoms of depression and anxiety. Prevalence of psychological symptoms was evaluated in adolescents and adults with cystic fibrosis (CF) and parent caregivers across nine countries. Patients with CF, ages 12 years and older, and caregivers of children with CF, birth to18 years of age, completed measures of depression and anxiety across 154 CF centres in Europe and the USA. Psychological symptoms were compared across countries using χ(2). Logistic regression examined extent of comorbid symptoms, predictors of depression and anxiety, and concordance between parent and adolescent symptomatology. Psychological symptoms were reported by 6088 patients with CF and 4102 parents. Elevated symptoms of depression were found in 10% of adolescents, 19% of adults, 37% of mothers and 31% of fathers. Elevations in anxiety were found in 22% of adolescents, 32% of adults, 48% of mothers and 36% of fathers. Overall, el...

PEDIATRIC PULMONOLOGY, 2010

Background: Little is currently known about the co-morbidity of depression and cystic fibrosis (CF) and there is currently no empirical research on the effects of depressive symptoms on adherence in children and adolescents with CF. The primary aim of this study was to evaluate the extent of depressive symptoms in children and adolescents with CF and their parents, and determine whether depressive symptoms in the child and/or parent was associated with adherence to airway clearance. We also evaluated whether children's perceptions of relational security with a parent were associated with adherence to airway clearance. Methods: Participants included 39 children with CF ages 7-17 years and their primary caregivers. Depressive symptoms were measured with the Children's Depression Inventory (CDI) and the Center for Epidemiological Studies-Depression Scale (CES-D). The Relatedness Questionnaire assessed the quality of parent-child relational security. Adherence to airway clearance was measured using the daily phone diary (DPD), an empirically validated adherence measure for youth with CF. Results: Rates of depressive symptoms were elevated in children with CF and their parents (29% for children; 35% for mothers; 23% for fathers). Child depressive symptoms were significantly associated with lower rates of adherence to airway clearance, after controlling for demographic variables (r ¼ À0.34, P ¼ 0.02). Child depressive symptoms were associated with worse perceptions of parental relationships (t(35) ¼ 3.2; P ¼ 0.002) and the quality of this relationship was also related to worse adherence (r ¼ 0.42, P ¼ 0.005). Conclusions: A large percentage of youth with CF and their parents reported elevated symptoms of depression. Children scoring in the depressed range on a standardized screening measure and those with less secure parent-child relationships were at greatest risk for poor adherence. Thus, depressive symptoms and family relationships are appropriate targets for adherence promotion interventions, which may ultimately improve health outcomes.

Open Journal of Nursing, 2015

The aim was to examine depression and anxiety among parents of children with Cystic Fibrosis and the association between the parents' symptoms and the child's quality of life as rated by the parents. Parents completed HADS (Hospital Anxiety and Depression Scale), and CES-D (Center of Epidemiologic Studies Depression Scale), and assessed the children's quality of life with CFQ-R (Cystic Fibrosis Questionnaire-Revised). Anxiety amongst the parents was higher than the general population (m = 6.55, SD = 3.54, p < 0.001). The level of depression does not differ from that of the general population. Mothers showed more anxiety symptoms than fathers (p < 0.001). Gender differences were not significant for depression symptoms. There is a strong association between the fathers' self-rated depression and their rating of their child's health. Both children and parents should be paid attention to in order to identify mental ill-health and take measures in good time.

BMC Pulmonary Medicine, 2015

Background: Cystic fibrosis (CF) is the most common autosomal recessive life-shortening disease among Caucasians. Studies exploring the prevalence of anxiety and depression in adult CF patients are few, show inconsistent findings and rarely include comparisons with general populations. Prevalence and degree of anxiety and depression were investigated in adult CF patients in Sweden, Belgium, Germany and the UK, and compared to corresponding general population data. Methods: Adult non-transplanted CF patients from the three largest CF-centres (out of four) in Sweden (N = 129; Age range 18-70 years; 50 % women) completed the Hospital Anxiety and Depression Scale (HADS). Studies using HADS in adult CF populations in the UK, Germany, and Belgium were included, as well as HADS normative data from the corresponding general populations. Results: No elevated risk for anxiety and depression was found among the CF patients. However, a Country x Group interaction effect emerged; CF patients experienced a higher degree of anxiety than the general population in Sweden, but not in the other countries, though this finding did not remain significant in a logistic regression analysis. In Sweden the effect was limited to women. A Country x Group interaction effect was also found for Depression; CF patients experienced lower degree of depression than the general population in Sweden, Germany and the UK, but not in Belgium/Netherlands. Conclusions: Contrary to earlier outcomes, the present results do not indicate any general elevated risk for anxiety and depression among CF patients. Anxiety was slightly higher in the Swedish CF population, compared to the general population; this finding was not seen in the other countries. Depression among CF patients was lower than or similar to that in the general populations in the studied countries.

Journal of Cystic Fibrosis, 2005

Background: The life expectancy of individuals with CF has increased to 33 years. Thus, issues such as quality of life and psychological wellbeing, previously thought to be of lesser importance than physical well-being, are now recognised as significant factors. This study examined the interrelationships between quality of life, family functioning, individual psychopathology and optimism of adolescents with CF. Methods: Adolescents attending the CF clinic completed a number of questionnaires. Quality of Life was measured using the Cystic Fibrosis Questionnaire, family functioning by the Family Environment Scale (3rd edition), general psychopathology with the Symptom Checklist-90-Revised and optimism for the future by the Hunter Opinions and Personal Expectations Scale. Disease severity was assessed using the Shwachman score and spirometry at the time of questionnaire completion. Results: The level of psychopathology (12.5% of those 13 years and over) in the group was lower than that reported for young people in Australia (15-20%). The results indicated that young people with a delayed diagnosis and those who are alienated from their families may be in need of additional psychosocial support. The group was hopeful and positive about their future and these attributes were independent of clinical measures of disease severity. In general, these young people scored relatively highly on the quality of life scale. For example the mean standardised score for physical functioning was 70 points, for respiratory symptoms was 63 points and for emotional state was 78 points. Increased levels of psychopathology and lack of hope for the future were however associated with lower ratings on a number of quality of life measures. Family cohesiveness, expressiveness and organization were associated with better psychological functioning in the young people. Conclusions: Adolescents with CF appear to be a psychologically well functioning and well-adjusted group. These findings support the importance of a more sophisticated model of well-being for adolescents with CF, which explores the young person's views on their quality of life and wider support frameworks rather than relying solely on measures of physical health to gauge well-being.

2021

Cystic fibrosis (CF), is an inherited life-limiting, an autosomal recessive monogenic disorder affecting all ethnic groups world over. The disease mainly affects the respiratory, gastrointestinal, and reproductive tract leading to abnormal exocrine gland secretions in an individual. The primary cause of morbidity and mortality in CF is progressive lung disease. 1 Adolescence is a turbulent phase in the life of an individual, especially in the presence of chronic diseases like CF. It can affect their biological, mental, and psychosocial domains. An adolescent living with CF can have significant emotional burden resulting in depression and anxiety. 2 Depression is an important global public health issue affecting adolescents with CF. 3 Several systematic reviews, meta-analyses, and original studies indicate higher prevalence of depression among adolescents CF patients. 4-10 Ranging from 3.3% to 29%, with an associated increased risk of non-adherence to treatment regimen due to depression. 6 Causes of depression in adolescents with CF can be attributed to the lifelong complex treatment regimen, frequent and multiple ABSTRACT Background: Cystic fibrosis (CF), an autosomal recessive monogenic chronic disorder affects the lungs, pancreas, and other exocrine glands, and manifests as recurrent respiratory infections, malabsorption, and a myriad of complications pertaining to other systems like hepatobiliary, endocrine and reproductive systems. Objectives were to assess the level of depression among adolescents with CF, to assess the coping strategies used by adolescents with CF and to find an association between selected sociodemographic and clinical variables with depression. Methods: In a cross-sectional survey, 30 adolescents with CF in the age group of 12-18 years, attending the specialty clinic of a selected tertiary care facility were enrolled using a purposive sampling technique. Tools consisting of sociodemographic and clinical profile, patient health questionnaire (PHQ)-9, and ways of coping with CF were used for data collection. Results: Most of the adolescents with CF (66.7%) had depression of varying severity with 36.7% having moderatesevere to severe depression. The frequently used coping strategies by the adolescents with CF were hopefulness (76.66±11.29), followed by optimistic acceptance (70.23±13.04). The individual coping strategy with the highest mean score was "having confidence on doctor and treatment" (3.83±0.37), while 'I cry, eat, drink or take drugs' had the lowest score (1.6±1.00). Conclusion: Depression is a common problem among adolescents with CF requiring regular screening and referral to experts for enhancing their coping strategy of optimistic acceptance.

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