Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries.

BACKGROUND: 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. METHODS: 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. RESULTS: 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, elevations were 2-3 times those of community samples. Participants reporting elevated anxiety were more likely to report depression (ORs: adolescents=14.97, adults=13.64, mothers=15.52, fathers=9.20). Significant differences in reports of depression and anxiety were found by patient age and parent respondent. Concordance between 1122 parent-teen dyads indicated that adolescents whose parents reported depression were more likely to be elevated on depression (OR=2.32). Similarly, adolescents whose parents reported anxiety were more likely to score in the elevated range on the anxiety measure (OR=2.22). CONCLUSIONS: Symptoms of depression and anxiety were elevated in both patients with CF and parents across several European countries and the USA. Annual screening of psychological symptoms is recommended for both patients and parents.

A Web-Based Mindfulness-Based Cognitive Therapy for Couples Dealing With Chronic Cancer-Related Fatigue: Protocol for a Single-Arm Pilot Trial.

BACKGROUND: Chronic fatigue is a common symptom among patients who have been treated for cancer. Current psychosocial interventions typically target the patient alone, despite growing evidence suggesting that a couples' approach can increase and broaden the efficacy of an intervention. Therefore, based on an existing web-based mindfulness-based cognitive therapy for patients, the couple intervention COMPANION was developed. OBJECTIVE: The primary objectives of this study are to determine the acceptability of COMPANION and its potential efficacy in reducing fatigue in patients with cancer. Our secondary objectives are to examine the feasibility of the trial procedures and the potential working mechanisms of the couple intervention. METHODS: We will conduct a single-arm pilot trial for couples (ie, patients with cancer with chronic fatigue and their partners). All couples are allocated to the web-based couple intervention that consists of psychoeducation, mindfulness, and cognitive-behavioral exercises. The 9 sessions of the intervention are supervised remotely by a trained therapist. Patients and partners will complete questionnaires before starting the intervention (T0), 2 weeks after completing the intervention (T1), and 1 month after T1 (T2). They will also fill out weekly diaries during the intervention period. A subsample of patients (n≈5) and partners (n≈5) as well as all the therapists providing COMPANION will participate in the final focus groups. Benchmark values have been defined to determine the acceptability (ie, ≥60% of couples complete the intervention and/or ≥70% of the participants are satisfied with the intervention) and potential efficacy (ie, a significant improvement in fatigue and/or a clinically relevant improvement in fatigue in 45% of the patients between T0 and T1) of the intervention. The trial procedures are deemed feasible if an average of at least three couples are included per recruiting month and/or adherence to the assessments is at least 65% for T1 and the diaries and 60% for T2. To establish potential working mechanisms, changes in affect, sleep, catastrophizing, partner communication and interactions, self-efficacy, mindfulness, and closeness will be examined. Quantitative outcomes will be interpreted along with the results from the focus groups. RESULTS: Data collection is expected to be completed by March 2024. CONCLUSIONS: This pilot trial will test the first web-based mindfulness-based cognitive therapy for couples targeting chronic cancer-related fatigue. Findings will indicate whether proceeding with a randomized controlled trial is warranted. TRIAL REGISTRATION: ClinicalTrials.gov NCT05636696; https://clinicaltrials.gov/study/NCT05636696. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48329.

How about your peers? Cystic fibrosis questionnaire data from healthy children and adolescents.

BACKGROUND: The Cystic Fibrosis Questionnaire (CFQ) is widely used in research as an instrument to measure quality of life in patients with cystic fibrosis (CF). In routine patient care however, measuring quality of life is still not implemented in guidelines. One of the reasons might be the lack of consensus on how to interpret CFQ scores of an individual patient, because appropriate reference data are lacking. The question which scores reflect normal functioning and which scores reflect clinically relevant problems is still unanswered. Moreover, there is no knowledge about how healthy children and adolescents report on their quality of life (on the CFQ). With regard to quality of life the effect of normal development should be taken into account, especially in childhood and adolescence. Therefore, it is important to gain more knowledge about how healthy children and adolescents report on their quality of life and if there are any difference in a healthy populations based on age or gender. Without these data we cannot adequately interpret the CFQ as a tool in clinical care to provide patient-tailored care. Therefore this study collected data of the CFQ in healthy children and adolescents with the aim to refer health status of CF youngsters to that of healthy peers. METHODS: The CFQ was completed by 478 healthy Dutch children and adolescents (aged 6-20) in a cross-sectional study. RESULTS: The majority of healthy children (over 65%) did not reach maximum scores on most domains of the CFQ. Median CFQ-scores of healthy children and adolescents ranged from 67 to 100 (on a scale of 0-100) on the different CFQ-domains. Significant differences in quality of life exist among healthy children and adolescents, and these depend on age and gender. CONCLUSIONS: Reference data of quality of life scores from a healthy population are essential for adequate interpretation of quality of life in young patients with CF. Clinicians should be aware that the perception of health-related quality of life is not as disease-specific as one might think and also relies on factors such as age, normal maturation and gender.

An asthma-related quality of life instrument is unable to identify asthmatic children with major psychosocial problems.

Evidence shows that psychosocial problems among children and adolescents with asthma interfere with adherence to treatment and therefore need attention in asthma care. It is unknown whether the already frequently implemented asthma-related quality of life (QoL) instruments reflect psychosocial problems in children with asthma. The aim of this study was to assess the relationship between asthma-related QoL and psychosocial problems and to determine whether an asthma-related QoL instrument is able to identify those children and adolescents with asthma with major psychosocial problems. In a multicenter study psychosocial problems (Strengths and Difficulties Questionnaire) and asthma-related QoL (Pediatric Asthma (Caregivers) Quality of Life Questionnaire) were obtained in children and adolescents with asthma aged 6-16 years and their caregivers. A total of 339 children and adolescents (response rate 95%) from four pediatric outpatient clinics in the Netherlands with doctor-diagnosed asthma participated. Of the caregivers, 43% reported major or minor psychosocial problems of their child or adolescent which is two times more than in the reference group, whereas the percentage of adolescents reporting psychosocial problems was comparable to a reference population. Adolescents and caregivers reported few impairments in asthma-related QoL (median score between 6.2 and 7.0). However, an optimal asthma-related QoL did not rule out major psychosocial problems: 10% of the adolescents with an optimal asthma-related QoL score reported major psychosocial problems. And in one out of seven children with an optimal caregiver's asthma-related QoL score, major psychosocial problems were reported. The prevalence of psychosocial problems in children and adolescents with asthma is considerable. Assessment of asthma-related QoL alone is insufficient to identify those children with major psychosocial problems. We recommend the implementation of psychosocial screening, besides assessment of asthma-related QoL, in routine pediatric asthma care, to improve asthma management.

Quality of life, fatigue and mental health in patients with the m.3243A > G mutation and its correlates with genetic characteristics and disease manifestation.

BACKGROUND: Mitochondrial disorders belong to the most prevalent inherited metabolic diseases with the m.3243A > G mutation reflecting being one of the most common mutations in mitochondrial DNA. Previous studies showed little relationship between mitochondrial genetics and disease manifestation. Relationship between genotype and disease manifestation with patient reported quality of life and other patient reported outcomes is still unexplored. METHODS: Seventy-two out of the 122 invited adult patients with m.3243A > G mutation completed online standardized questionnaires on quality of life, functional impairment, fatigue and mental health as assessed by the RAND-SF36, the Sickness Impact Profile (SIP), the Checklist Individual Strength (CIS) and the Hospital Anxiety and Depression scale (HADS). Data were related to clinical manifestation reflected by the Newcastle Mitochondrial Disease Adult Scale (NMDAS) score and heteroplasmy levels of the mutation in urine epithelial cells. RESULTS: Patients reported impaired quality of life. Sixty percent showed severe levels of fatigue, and 37% showed clinical relevant mental health problems, which was significantly more than healthy norms. These patient reported health outcomes showed negligible relationship with levels of heteroplasmy (r = <.30) and weak (.30 < r < .50) to moderate (.50 < r < .70) relationship with clinical manifestation. CONCLUSIONS: Patient reported outcomes on quality of life, fatigue and mental health problems, are only partly reflected by clinical assessments. In order to support patients more effectively, integration of patient reported outcomes, alongside symptoms of their disease, in clinical practice is warranted.

Four of a kind: asthma control, FEV1, FeNO, and psychosocial problems in adolescents.

BACKGROUND: Many adolescents have poor asthma control and are at high risk for psychosocial problems. However, structured assessment of asthma control or psychosocial problems is still not implemented in routine asthma care. Pediatricians typically rely on their clinical view and physiological measurements. To date, it is unknown whether clinical and patient reported outcomes are interrelated. Furthermore, there is no consensus on who should be the informant; the adolescent or his caregiver. STUDY AIM(S): This study aimed to assess the relationship between patient and caregiver reported outcomes [Asthma Control Questionnaire and Strengths and Difficulties Questionnaire (SDQ)] and physiological parameters (FEV1 and Fractional exhaled Nitric Oxide) in adolescents (aged 11-16) with asthma. METHODS: A multicenter observational study was performed in four Dutch pediatric outpatient departments. Association between asthma control, physiological parameters, and results of psychosocial questionnaires completed by both adolescent and caregiver was analyzed. RESULTS: Forty-eight adolescents and their caregivers participated in this study. Asthma was uncontrolled in about 30%. Asthma control was not associated with age, gender, FEV1, FeNO, or psychosocial problems. Agreement between adolescents and caregivers about how well asthma was controlled was moderate (κ = 0.577, P < 0.01). DISCUSSION: Asthma control, physiological parameters, and psychosocial problems are different domains of health status. It could be suggested to use validated patient and caregiver reported outcomes in routine adolescent asthma care. CONCLUSION: Patient and caregiver reported outcomes on asthma control and the presence of psychosocial problems add valuable, unique information to physiological parameters in adolescent asthma management.

Psychological characteristics associated with the onset and course of asthma in children and adolescents: a systematic review of longitudinal effects.

OBJECTIVE: to systematically review all available studies that investigated the longitudinal relationships between the psychological characteristics of children and adolescents suffering from asthma and those of their caregivers, and the onset and course of the asthma. METHODS: relevant studies were identified using Medline, PubMed, and PsychINFO between 1970 and September 2009. RESULTS: twenty studies matching inclusion criteria were reviewed. Six studies focused on child-specific psychological characteristics in relation to the onset and course of asthma. No compelling evidence was found for an association with asthma onset, but there was some evidence that the child's psychological characteristics can contribute to the subsequent course of asthma. Fourteen studies considered the effects of the psychological characteristics of the caregivers. Eleven studies found significant relationships between the psychological problems of caregivers and the subsequent onset and unfavorable course of the asthma in the child. CONCLUSION: in pediatric asthma both the psychological characteristics of the affected children and their caregivers appear to contribute to the course and possibly also to the onset of the condition.