Introduction to Cystic Fibrosis for Mental Health Care Coordinators and Providers: Collaborating to Promote Wellness

Mueller, Amy; Georgiopoulos, Anna M.; Reno, Kim; Roach, Christine; Kvam, Christopher M; Quittner, Alexandra L.; Lomas, Paula; Smith, Beth A.; Filigno, Stephanie S.

doi:10.1093/hsw/hlaa009

Cited by 7 publications

(7 citation statements)

References 32 publications

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“…Participants were recruited from a pool of 124 awCF at Amsterdam UMC between March-October, 2021. All awCF with mild or moderate PHQ-9/GAD-7 scores (5)(6)(7)(8)(9)(10)(11)(12)(13)(14), without either score above moderate (≥15), were eligible and were invited to participate (N = 12). Two eligible candidates declined participation; One due to a mild language barrier and extended stay outside the Netherlands, and another due to time limitations and the fact that this person was already receiving psychological treatment.…”

Section: Participants and Proceduresmentioning

confidence: 99%

“…Consequently, CF Foundation (CFF) and European CF Society (ECFS) guidelines recommend routine screening, treatment, and preventative efforts for depression and anxiety 1–3 . However, many barriers to accessing mental health care for awCF remain 4,5 . These may include financial and insurance limitations, long waitlists, and balancing mental health care needs with high CF treatment burden.…”

Section: Introductionmentioning

confidence: 99%

“…mental health care. 5 Infection risk, exacerbated by the COVID-19 pandemic, 6 may present a barrier for awCF to weekly in-person individual psychotherapy, particularly for those posttransplant, while in-person group care models are contraindicated. In addition, awCF often feel burdened with educating mental health care providers unfamiliar with CF.…”

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confidence: 99%

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Pilot of a therapist‐guided digital mental health intervention (eHealth CF‐CBT) for adults with cystic fibrosis

Verkleij

Georgiopoulos

Barendrecht

et al. 2023

Pediatric Pulmonology

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Background: eHealth CF-CBT is the first digital mental health intervention for depression/anxiety in adults with cystic fibrosis (awCF); an 8-session therapistguided internet-delivered program that was developed in English and Dutch with stakeholder input and evaluation indicating high acceptability and usability.Methods: Dutch eHealth CF-CBT was piloted in awCF with mild-moderate symptoms of depression and/or anxiety. Feasibility, usability, acceptability, and preliminary efficacy were assessed, measuring pre-post changes in depression (PHQ-9), anxiety (GAD-7), perceived stress (PSS), and health-related quality of life (CFQ-R). Results: All participants (n = 10, seven female, mean age 29 [range 21-43], mean FEV1 71%pred [range 31-115]) completed all sessions. Patient-rated feasibility, usability, and acceptability of eHealth CF-CBT were positive on validated scales, as were qualitative assessments of content and format. GAD-7 improved in 90% of participants; in 50% by ≥the minimally important difference (MID) of four points.PHQ-9 improved in 90%; 40% by ≥the MID of 5. PSS improved in 80%. CFQ-R improved in the domain health perceptions (70%).Conclusions: eHealth CF-CBT demonstrated feasibility, usability, acceptability, and promising preliminary efficacy in this pilot trial with Dutch awCF with mild to moderate symptoms of depression and anxiety.

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Section: Participants and Proceduresmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Pilot of a therapist‐guided digital mental health intervention (eHealth CF‐CBT) for adults with cystic fibrosis

Verkleij

Georgiopoulos

Barendrecht

et al. 2023

Pediatric Pulmonology

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“…4 Despite increased attention to mental health in CF, barriers remain, such as stigma, insurance/financial limitations, long waitlists, lack of understanding of CF by community-based providers, and a dearth of providers trained in evidence-based interventions such as CBT. 5,6 The COVID-19 pandemic has exposed and worsened the shortage of available mental health providers. 7 CF exacerbations can disrupt continuity of mental health care, particularly for those with advanced disease who may require additional support.…”

Section: Introductionmentioning

confidence: 99%

Feasibility and acceptability of a CF‐specific cognitive‐behavioral preventive intervention for adults integrated into team‐based care

Friedman

Smith

Bruce

et al. 2022

Pediatric Pulmonology

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Background A cystic fibrosis (CF)‐specific cognitive‐behavioral therapy intervention (CF‐CBT) was developed in partnership with the CF community to advance preventive mental health care. Multidisciplinary providers across three centers were trained to deliver CF‐CBT for this pilot assessing feasibility/acceptability and preliminary effectiveness of an integrated model of care. Methods The 8‐session CF‐CBT was delivered to 14 adults with mild depression and/or anxiety symptoms in‐person and via audio telehealth. Assessment of attrition, engagement, homework completion, treatment satisfaction, and treatment fidelity informed feasibility/acceptability assessment. Mental health outcomes included depression, anxiety, quality of life (Cystic Fibrosis Questionnaire‐Revised [CFQ‐R), perceived stress and coping. Preliminary effectiveness was evaluated with Cohen's d metric of effect sizes (ES) of pre‐post mean change scores. Results A total of 108 sessions were conducted; 13 adults completed the intervention; 1 discontinued early. Engagement, homework completion, and treatment acceptability were highly rated (mean = 30; SD = 2, range: 27–32 on a 32‐point scale). Fidelity scores ranged from 85.7% to 93.6%. Large ES changes reflected improvements in depressive symptoms (−0.83), CFQ‐R (Vitality scale: 1.11), and Relaxation Skills (0.93); moderate ES for CFQ‐R Role Functioning (0.63), Awareness of Tension (0.62), Coping Confidence (0.70) and CF‐specific Coping (0.55); and small ES for anxiety symptoms (−0.22), perceived stress (−0.25), Behavioral Activation (0.29), and several CFQ‐R domains, including Emotional Functioning (0.29). Two CFQ‐R subscales decreased (Body Image, Eating Concerns). Conclusions Results indicated feasibility and acceptability of CF‐CBT and its integration into team‐based CF care with promising effectiveness, especially for depression. A multicenter randomized controlled trial of CF‐CBT will further examine effectiveness of a CF‐specific integrated care model.

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“…Screening provides a tremendous opportunity for early intervention to prevent negative outcomes. However, access to evidence-based mental health care that addresses the needs of pwCF is limited; barriers to access include insurance or financial obstacles, the lack of understanding about CF by community-based providers, limited availability of mental health care providers with training in evidence-based interventions, and long waitlists for care (Mueller et al, 2020). A survey of 1,454 CF healthcare professionals conducted by the CFF and ECFS concluded that CF centers need additional training and educational resources to implement the mental health guidelines.…”

Section: Introductionmentioning

confidence: 99%

Patient engagement in the development of CF-CBT: A cystic fibrosis-specific cognitive-behavioral intervention for adults

et al. 2022

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Individuals with cystic fibrosis (CF) are at high risk for depression and anxiety, with negative consequences for health and quality of life. Cystic Fibrosis Foundation/European Cystic Fibrosis Society guidelines recommend routine screening, treatment, and preventative efforts. Cognitive-behavioral therapy (CBT) has a large evidence-base for depression/anxiety prevention and treatment. However, traditional CBT protocols require adaptation to address the emotional challenges of coping with CF, stressors related to disease management, and barriers to access to care. The goal of this study was to partner with the CF community to develop an innovative CBT-based intervention for the prevention and treatment of depression and anxiety tailored to CF-specific needs. In-depth feedback was collected via audio-recorded telephone interviews with 16 adults with CF from 3 U.S. CF centers, with purposive sampling across gender, age, ethnicity, and disease severity. A semi-structured interview guide elicited discussion of patient experiences of coping with CF, and perspectives on the acceptability of the content, structure, and delivery model of the proposed intervention. Qualitative analysis utilized a content analytic approach. Participants ranged from 21 to 53 years (M = 35); eight were female; three were Hispanic. Patient-reported most recent FEV1, a measure of lung function based on forced expiratory volume in in one second, ranged from 25 to 113% predicted (M = 72). One participant was post-double lung transplant. Qualitative interviews were analyzed thematically revealing core themes related to the experience of coping with CF. The most frequently cited CF-related stressors were Treatment Burden, Illness Uncertainty, and Financial/Insurance Stress. Participants talked about the interaction of physical symptoms and emotional distress in their daily lives, a topic not typically discussed in routine CF care. Resilience was also a major theme with participants describing strategies they use to cope with CF and hospitalizations. Description of patients’ experiences was incorporated into the program’s intervention manual and patient workbook. Participants also provided direct feedback on the proposed program. Feedback was largely positive regarding program content and structure, suggesting the acceptability of a CF-specific CBT-based intervention for adults with CF. Features to increase accessibility of care including telehealth, inpatient delivery, and team-based care were perceived as advantageous, and participants emphasized the value of a CF-specific mental health intervention. Qualitative findings directly informed the development of CF-CBT, a cognitive-behavioral skills-based program to promote emotional well-being for adults with CF.

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Introduction to Cystic Fibrosis for Mental Health Care Coordinators and Providers: Collaborating to Promote Wellness

Cited by 7 publications

References 32 publications

Pilot of a therapist‐guided digital mental health intervention (eHealth CF‐CBT) for adults with cystic fibrosis

Pilot of a therapist‐guided digital mental health intervention (eHealth CF‐CBT) for adults with cystic fibrosis

Feasibility and acceptability of a CF‐specific cognitive‐behavioral preventive intervention for adults integrated into team‐based care

Patient engagement in the development of CF-CBT: A cystic fibrosis-specific cognitive-behavioral intervention for adults

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