SummaryLittle is known about depressive and anxious symptoms and quality of life (QOL) in caregivers of children with cystic fibrosis (CF). The aims of this study were to: (1) assess rates of female and male caregiver depressive and anxious symptoms, and (2) evaluate relations between depressive and anxious symptoms, caregiver QOL, and health outcomes.Patients and MethodsEligible participants were caregivers of children with CF who completed three questionnaires assessing depressive and anxious symptoms and caregiver QOL during routine CF Clinic appointments.ResultsRates of depressive and anxious symptoms were elevated in female and male caregivers of children with CF. Rates were higher for anxious (51% for females, 43% for males) than depressive symptoms (20–28% for females; 14–31% for males). Female caregiver depressive symptoms increased as child lung functioning decreased. As depressive and anxious symptoms increased, caregiver QOL decreased. In addition, female caregiver depressive and anxious symptoms were positively correlated with male caregiver anxious and depressive symptoms in a small subsample of couples. CF disease severity and caregiver depressive symptoms predicted caregiver QOL.ConclusionRates of depressive and anxious symptoms are high among caregivers of children with CF. The results of this study highlight the need to screen for female and male caregiver depressive and anxious symptoms in the CF Clinic as CF Team members are well positioned to provided assistance around solving CF-related challenges. In addition, alleviation of depressive and anxious symptoms could potentially lead to improvements in the psychological functioning and well-being of caregivers of children with CF. Pediatr Pulmonol. 2009; 44:784–792. © 2009 Wiley-Liss, Inc.

Summary Background Although studies have assessed symptoms of depression and anxiety in individuals with cystic fibrosis (CF), few have been conducted since the advent of new medical treatments (e.g., nebulized antibiotics, ThAIRpy Vest). Study objectives were to: 1) document symptoms of depression and anxiety for adolescents and young adults with CF and compare with normative values, 2) examine the associations among depressive/anxiety symptoms and gender, age, lung function, and body mass index, and 3) determine the relations between adolescent and caregiver symptoms of depression and anxiety. Methods Patients and caregivers completed the Hospital Anxiety and Depression Scale (HADS) anytime (e.g. beginning or end) during routine CF clinic appointments. Results Participants included 59 adolescents/young adults with CF (Mage = 15.8 years, 54% female, 98% Caucasian, MFEV1 % predicted = 84.6) and caregivers of 40 adolescents. Although symptom scores were in the normative range for patients with CF (MDepression = 2.27 and MAnxiety = 5.59), 3% and 32% exhibited clinically elevated symptoms of depression and anxiety, respectively. Symptoms of depression and anxiety were significantly associated with age (r = 0.28, 0.36). Symptoms of depression and anxiety were also positively correlated (r = 0.48). Females endorsed higher anxiety symptoms than males. While adolescent and caregiver anxiety scores were not related, higher caregiver depressive symptoms were associated with older patient age and worse lung function. Conclusions Data from the current study suggest low levels of depressive symptoms and substantial levels of anxiety symptoms in adolescents and young adults with CF. Consistent with prior literature, depressive symptoms appear higher in older patients and are significantly associated with anxiety symptoms. Caregiver symptomology appears to be more affected by an adolescent’s health status, suggesting a need to screen caregivers when health begins to decline.

Objective: Patients with cystic fibrosis (CF) undertake time-consuming programs of home therapies. Our objective was to develop a tool to help CF patients prioritize personal goals for some of these treatments. We describe the development and results of initial evaluation of this shared decision-making tool. Methods: Multicriteria decision-making method to develop a shared decision-making tool that integrates patient’s values and perceptions of treatment impact on functionality/sense of well-being. Treatment efficacy data obtained through comprehensive review of English language literature and Cochrane reviews. Field study of 21 patients was performed to assess acceptability of the approach, understandability of the tool, and to determine whether there was sufficient patient-to-patient variability in treatment goals and patient preferences to make use of a personalized tool worthwhile. Results: Patients found the tool easy to understand and felt engaged as active participants in their care. The tool was responsive to variations in patient preferences. Priority scores were calculated (0–1.0 ± SD). Patients’ most important treatment goals for improving lung health included improving breathing function (0.27 ± 0.11), improving functionality/sense of well-being (0.24 ± 0.13), preventing lung infection (0.21 ± 0.08), minimizing time to complete treatments (0.16 ± 0.12), and minimizing cost (0.11 ± 0.09). Conclusions: A shared decision-making tool that integrates patients’ values and best evidence is feasible and could result in improved patient engagement in their own care.