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.