Partnerships for Sustaining Daily Care

Cystic fibrosis can affect many aspects of people's lives with the disease. Each aspect can represent a barrier to managing daily care, including financial and emotional issues, a person's life stage, personal values, and goals.

Recognizing these challenges, the Cystic Fibrosis Foundation made a strategic commitment to develop a multi-pronged approach to help people with CF stick with their treatment plans called Partnerships for Sustaining Daily Care (PSDC). The goal of PSDC is to bring together individuals with CF, their families, and care teams to foster productive conversations about aligning personal goals with health goals.

Building partnerships to sustain daily care is complex and demands a comprehensive approach to create solutions without posing additional burdens on people with CF, their families, or care teams.

Consisting of overlapping elements, this approach allows for a continuous process that is informed by community stakeholders engaged to promote dialogue, share ideas, and establish measures to test behavioral interventions before they can be embedded into specialized CF care.

Engaging stakeholders and promoting dialogue by encouraging people involved in CF care to share their ideas and personal experiences is critical to helping our community learn from each other. It is important to hear how people with CF, their families, and care teams think and talk about “adherence,” approach their daily care, the challenges they face, and what they want from a partner who can help them manage their daily care.

I like to hear how other patients manage treatments, full-time jobs, and parenting. Sharing best practices or innovative ideas is very helpful. Also it's helpful when the care team brings it up so I feel less like a failure. -- Adult living with CF

Finding the right words to discuss the challenges of sustaining a daily care routine can be difficult for many people with CF, their families, and their care teams. To acknowledge that these conversations are important and often difficult, the CF Foundation is asking the community to share their stories about CF treatments with a focus on the daily care plan, the barriers to sustaining that care, and the personal motivations such as individual life goals that compel people with CF to overcome barriers in order to successfully manage their disease.

If you tell me you're doing your treatments four times a day and you're sitting here with a 50 percent drop in your lung function, it's going to be hard for me to figure out what to say or do. But, if you sit here and say 'Eh, I'm only doing it three times a week,' I'll say, 'OK, great. That gives me a bigger playing field to figure out where to go and figure out what we are going to do to make it better.' -- Nurse coordinator at Northwestern University CF Center

Encouraging Your Child to Ask Questions

Communication materials were tested with care teams, patients, and families at six CF care centers. The results from this pilot are being used to inform an educational campaign and to develop tools and training to support successful conversations between patients, families, and care teams around sustaining daily care.

Establishing objective measures and testing behavioral interventions are essential to assess and customize interventions and to compare their impact. Establishing a set of standard adherence measures can trigger more productive conversations on sustaining daily care between patients, their families, and care teams. The CF Foundation is working on several initiatives that provide tools for use in CF care to address concerns of sustaining daily care:

• Barrier screening tools: These tools will provide a standardized method to uncover barriers at both the individual and systematic levels. Clinicians and patients will be able to use the tools to customize their approach to treatment.
• Prescription refill data project: Working with a specialty pharmacy, the Foundation has been studying prescription refill rates as an objective measure of sustaining daily care. Care teams and their patients can view this data through a dashboard to identify gaps between prescribed and actual medication refills.
• Devices with memory storage: Micro-chipped devices such as nebulizers and pill bottles will be included in some of the behavior-based interventions being tested.

Using Objective Measures to Improve CF Care

Using a systematic process, interventions designed to identify various barriers to adherence and help people with CF overcome them will be designed and tested for how well they can be practically implemented across the care center network. The work will be conducted within the Success with Therapies Research Consortium (STRC), where investigators from both adult and pediatric CF care programs are designing and testing interventions that are effective, practical, measurable, scalable, and sustainable.

Once the most effective and practical interventions and tools are identified, the next step will be to develop training and educational guides to support implementation across the care center network.

These resources will be reassessed as they are practiced in the real world and adapted as appropriate to drive continuous improvement. Training programs that prove to be effective will be embedded into CF care through quality improvement processes.

To move away from a one-sided conversation about “adherence” to prescribed medications toward supporting “partnerships for sustaining daily care,” it is important to acknowledge that these conversations can be awkward or difficult. But over time, these conversations can get easier as the interactions between people with cystic fibrosis, their families, and care teams grow into trusting partnerships.

This is why we invite you to share your stories or brief moments of care encounters -- good and bad -- so your insight can be used to promote a dialogue and exchange perspectives surrounding partnerships for sustaining daily care.

Problem-Solving to Address Barriers

These stories will be used to identify strategies, conversation styles, and tips to share with care teams, adults with CF, and their families so that they can apply the PSDC concepts into their regular clinical practice and daily care routines. So after you read this, take the time to self-reflect. Draw on your own experiences where you've had conversations (good or bad). We also ask you to help develop, test, and adopt the most effective ways to maintain daily care -- informed by your own personal experiences and those around you -- to be vocal champions to spread these ideas among our broader community.

Join the Conversation

Send us an email and share your story or ideas about sustaining daily CF care. We're listening at PSDCteam@cff.org.

Understanding Patient-Clinician Communication: A Comprehensive Pilot Project Report (PDF)