Discussion
To our knowledge, this is the largest systematic, national effort to integrate routine mental health screening and treatment into the care of adolescents and adults with a serious, chronic illness. This study was conducted with a geographically diverse, nationally representative group of CF programs including large and small programs and those from urban and rural areas. As recommended by the mental health guidelines, CF programs began to implement annual screening of depression and anxiety using 2 brief, validated tools with suggested practices for intervention and follow-up.12 A well-established implementation model was utilized to evaluate the process over 3 years in 3 cohorts of CF programs. Results demonstrated substantial increases in implementation scores both at the cohort and individual program level, with confirmation of success implementing of screening in the CFFPR.
Dissemination and implementation of new practice guidelines is extremely challenging and often delayed by the complexity of the healthcare system, the difficulties of hiring and retraining staff, and the ever-present time constraints faced by busy clinics.15-16 It is hard to over-estimate the challenge for CF programs of adding systematic assessment and treatment of mental health symptoms to the existing difficulty of addressing a complex, chronic disease affecting multiple organ systems. Barriers to implementation included introduction of new standardized measures and scoring procedures, the necessity of addressing suicidal ideation if endorsed, the addition of a new role for a mental health expert on the multidisciplinary team, and the perennial shortages of staff time and clinic space. How did this implementation effort succeed?
First, the CFF (Outer Setting) took a leadership role in supporting the development of the mental health guidelines (i.e., co-sponsoring the guidelines with ECFS, with an executive member of the CFF serving on the guidelines committee) and the subsequent establishment and funding of competitive grants for a Mental Health Coordinator for 3 years. This greatly facilitated the hiring, training/retraining and financing of a team member with mental health expertise.
The establishment of the MHAC by the CFF was a critical contributor to implementation success. The MHAC research subcommittee documented implementation barriers, successes and training needs. To augment the Implementation Guide included as an Appendix to the mental health guidelines, 12 the MHAC offered a CF mental health Quality Improvement Change Package and a customized, interactive screening tracker. New MHC’s had access to 1:1 consultations and peer mentoring, a group peer supervision program, and in-person networking events. As a centerpiece of creating robust psychosocial conference programming, guided by MHC survey needs assessment and CF healthcare provider feedback, the MHAC developed a series of specialized 4-8 hour training courses delivered at the NACFC and later adapted for international use; from 2016-2018, these included: Depression and anxiety treatment in CF: Therapy, medications and preventative strategies; Mental health in CF: Taking your team to the next level to support emotional wellness for individuals with CF; Foundational motivational interviewing skills for every CF clinician ; andAdvanced strategies to address misuse of alcohol & other substances . An “emotional wellness” section was added to the public-facing CFF website (cff.org), to house multimedia content targeted to the needs of CF healthcare providers and CF community members. Topics initially included depression, anxiety, substance misuse, and caregiver resilience, with subsequent expansion to include helping CF siblings cope, procedural anxiety, and strategies for adults with CF who become parents). To further promote communication and dissemination of their work, the MHAC created an international mental health listserv, a “Dropbox” of resources accessible to all healthcare providers, and an email point of contact,mentalhealth@cff.org.
The CF Foundation Care Center Network’s support of a multidisciplinary team approach also augments characteristics of the Inner Setting, making inclusion of a new team member, or new role for an existing team member, a “normal” part of the culture of CF care. Inner Setting characteristics, such as regular Family Education Days at CF programs, also fostered communication about the new mental health guidelines to pwCF and their families. Our prior analysis of data from the first year of Cohort 1 demonstrated substantial “buy in” from the CF community, with over 95% of pwCF and caregivers rating the new mental health screening program “somewhat to very” positively.17
Importantly, the only significant predictor of implementation success identified by our study was length of MHC experience on the CF team. This has important implications for the larger healthcare system—reinforcing the importance of investing in healthcare staff and promoting continuity of care providers. The experience and longevity of providers may be particularly important when implementing new clinical guidelines that require a higher level of knowledge of the patient population and their clinical challenges, familiarity with the complexity of their own healthcare system, knowledge of referral sources within the hospital as well as within the community, and establishment of trust among multidisciplinary team members.
As implementation progressed over time, concerns about the sustainability of these positive changes in clinical care increased and were expressed by CF care teams and advocates in the CF community. Efforts to seek funding from departmental and hospital sources, to identify cost savings related to addressing mental health concerns (e.g., improved adherence and clinic attendance, reduced hospitalizations) and information about billing for psychological services, were all explored as options to maintain mental health screening and treatment. There was widespread reluctance to lose the gains that had been made in addressing mental health while caring for pwCF and their families. The Outer Setting leadership at the CFF shared these concerns and recognized the importance of mental health care delivered by the CF programs. A line item was added in the 2020-2021 CFF care center grants to maintain the role and function of the Mental Health Coordinator across the US. This may be the strongest indicator of implementation success; the healthcare system shifted to permanently establish a minimal level of psychological support in CF care.