Jamie Wilcox OTD, OTR/L

Background. Cystic fibrosis (CF) is a complex chronic illness requiring individuals to follow a multifaceted, time-intensive, daily treatment regimen. Adherence to prescribed treatments is critical to ensuring health outcomes that support individuals with CF to live full lives. Adherence to treatments, however, is not always easy. A combination of financial, practical and psychosocial issues contribute to the challenges of sustaining daily CF care. Occupational therapists provide a holistic and unique approach to the evaluation and treatment of patients with CF by acknowledging and addressing barriers to self-management.

There are some instruments available that measure one or more aspects of self-management, however, there is no generic instrument that exists that aims to measure specific client factors that could be a barrier for self-management. Relying on these insights, we aimed to develop and validate a generic, brief and practically applicable self-management questionnaire to measure possible patient-related barriers to self-management in adults with CF.

Methods. A prototype of the “Self-Management of Cystic Fibrosis Index” was drafted, consisting of 15 questions that are frequently addressed during initial occupational therapy (OT) evaluation. To reach high content validity, a literature review and focus group with healthcare professionals as input for the tool was performed. The characteristics of self-efficacy, anxiety, coping, and perceived burden of disease were incorporated into the tool.

Preliminary Results. In total, 9 participants completed the Self-Management of Cystic Fibrosis Index - once upon initial admission to the hospital and one additional time before discharge, after at least 1-2 inpatient OT treatment sessions focusing on self-management training. Responses from each of the 15 questions were assessed and 9 out of 9 respondents demon- strated at least 1 improvement in symptom recognition, symptom manage- ment, and/or overall confidence in CF disease self-management skills.

Conclusions. The Self-Management of Cystic Fibrosis Index is a tool designed to assess three dimensions: 1) knowledge, confidence and preparedness of disease self-management; 2) provide a clinically meaningful measure; 3) provide immediate feedback to the healthcare provider for treatment goal setting. The instant scoring and specific feedback should provide significant value in the patient assessment in adults with CF.

Background. Numerous studies have shown that cystic fibrosis (CF) is a complex and multi-factorial disease that requires a multidisciplinary team approach to provide best care. Current CF Foundation guidelines, however, do not include an occupational therapist (OT) as part of this team. Despite extensive quality improvement initiatives by various CF care teams, there are still major gaps in the care of these patients surrounding issues of self-management, adherence to treatment, and coordination of care. We describe the first integration of CF-specialized OT as part of the primary care team achieving improvements in these management gaps.

Methods. Beginning in August of 2011 to present, all admitted adult CF patients received an OT consult within seventy-two hours of admission. Each patient is then evaluated by one of two CF specialized OTs prompting a plan of care when need for intervention is identified. Patient progress is reviewed during weekly multi-disciplinary rounds and as-needed basis. On discharge day, OT short-term goals are collaboratively established with the patient and the CF team. At two week post-hospital discharge clinic visit, the primary OT reviews these personalized goals and modifies as needed.

Results. A total of 64 individual adult CF patients were evaluated by the USC Occupational Therapy department. Mean age of 33, ranging from 21 to 58 years. Fifty-eight of the 64 patients (91%) were identified as requiring subsequent inpatient or outpatient treatments targeting one or more OT interventions. Since initiation, this collaborative effort has expanded to include two OTs who split their time between inpatient and outpatient services as well as provide collaborative efforts in weekly administrative/pre-clinic meetings and multidisciplinary rounds.

Discussion. We have established a successful standard of care for our adult CF specialized OTs. After presenting the foci and benefits of OT interventions at NACFC in 2012, there have been various inquiries and consultation requests from accredited CF care centers regarding the process of including an OT into their CF care team and the benefits of this collaboration. Through this quality improvement initiative, we clearly defined the role of our CF-specialized OTs as the experts in providing client-centered, evidence-based interventions to encourage health behavior changes. The focus is to improve adherence to therapies and teach self-management skills as well as create an action plan for a gradual lifestyle change integrating respective goals from every CF care team member. By providing services through the continuum of care from inpatient to outpatient, OTs help bridge and maintain long-term behavior modifications and goal attainment. The high percentage of patients requiring subsequent treatments following an OT evaluation demonstrates that there is a need for an OT on an adult CF care team. Furthermore, in contribution to the larger team quality improvement efforts, OTs have emphasized importance of inpatient care coordination and the impact of habits and routines on health management.

Background. Adults with CF self-report low treatment adherence, which has been linked to worse health outcomes and increased number of pulmonary exacerbations. Treatment burden generally surrounds: airway clearance, physical exercise, nutritional requirements, pancreatic enzymes and regular blood glucose monitoring. Self-management of CF requires adult patients to: 1) Adhere to prescribed treatments, 2) Self-monitor physical symptoms, 3) Actively engage with their health care team, and 4) Minimize the impact of CF on their daily functioning, life roles and personal development. Occupational therapists (OT) provide a unique approach to self-management intervention, in that they recognize and address the impact of life roles, daily habits and routines on the management of a chronic condition and the development of health promoting habits. The purpose of this study is to demonstrate the impact of CF-specialized OT intervention on patient self-management skills and the development of healthy lifestyles.

Methods. OT evaluation of 10 adults with CF (mean age 25.5, 60% female) was completed in an inpatient (60%) or outpatient (40%) setting. Evaluation methods identified each patient’s: 1) current life roles, daily routines and health behaviors; 2) self-management performance skills (problem solving, action planning, decision-making, self-awareness and communication); 3) willingness to engage in behavior change; and 4) goals for personal development/life achievement. Central components of OT intervention included: motivational interviewing, cognitive-behavioral skill development, collaborative short-term goal setting, and action planning through graded daily routine modification. Interval assessment of goal achievement was completed in collaboration with the patient. Data collection focused on: treatment setting, number of therapy sessions, number of goals set (GS) and number of goals achieved (GA).

Results. Inpatient-based OT included an average of 6 sessions, resulting in 75% GA (mean of 5.3 GS). Outpatient-based OT included an average of 5.75 sessions, resulting in 78% GA (mean of 8 GS). The most frequent outcome of GA was related to improved variability in patient time use to integrate both CF self-management and priorities of daily life. All ten patients had goals set within this category, with 7/10 positive outcomes.

Discussion. The results of this study support the effectiveness of CF specialized OT, in both inpatient and outpatient settings, to improve patient self-management skills and promote patient motivation to engage in healthy routines as a stepping stone to life goal achievement. Patient reports have demonstrated consistent findings, for example: “My OT is helping me learn to take care of myself, something I’ve never understood how to do.” “Because of you I am finally able to see myself doing the things I want to do rather than just dream of them.” Future research can examine the long-term effectiveness of OT interventions on lifestyle change and the impact on patient objective health outcomes.