<div>Rounding out the pediatric CF care team: Including the profession of
occupational therapy</div><div>Madeline Hines, B.S.</div><div>The University of Toledo</div><div>College of Health &amp; Human Services Occupational Therapy Doctorate
Program</div><div>Nicole Stotz, OTD, OTR/L</div><div>The University of Toledo</div><div>College of Health &amp; Human Services Occupational Therapy Doctorate
Program</div><div>Bruce Barnett, MD</div><div>Clinic Director at the Pierre Vauthy Cystic Fibrosis Center of Northwest
Ohio</div><div>Vice President of Medical Affairs, ProMedica Russel J. Ebeid Children’s
Hospital</div><div>Correspondence:</div><div>Madeline Hines</div><div>17017 West State Route 105</div><div>Elmore, Ohio</div><div>419-690-9144</div><div>419-530-4780 (Fax)</div><div>Madeline.hines@rockets.utoledo.edu</div><div>Keywords:</div><div>therapy, interprofressional team, collaborative practice</div><div>Summary</div><div>The literature has identified continued needs for children with cystic
fibrosis. The profession of occupational therapy is uniquely equipped
and trained to address a variety of needs that children with cystic
fibrosis experience during daily life engagement, potentially filling
this gap in services. Despite this, occupational therapists are rarely
consulted or included in patient care plans. It is the goal of this
letter that professionals working in the field of cystic fibrosis will
gain an understanding and appreciation for the profession of
occupational therapy when considering care plans for their patients.</div><div>To the Editor,</div><div>The care team surrounding children and adults with cystic fibrosis is
historically interdisciplinary in nature. However, the profession of
occupational therapy is seldom utilized during outpatient or inpatient
based services. Therefore, there are opportunities for occupational
therapists to provide a unique, holistic, and client-centered service to
address the negative impacts on quality of life and independence in
everyday occupations.</div><div>Occupations, or individualized everyday activities that an individual
engages in to occupy their time while seeking meaning and purpose in
one’s life <sup>1</sup>, is an area of skill and expertise for
occupational therapy professionals. Occupational therapists provide
services for the purpose of habilitation, rehabilitation, and promotion
of health and overall wellbeing for individuals across the lifespan to
promote function and participation in everyday occupations. Being that
occupational therapists are knowledgeable and skilled in providing
therapy services in a variety of areas (i.e., cognition, gross/fine
motor, emotional regulation, etc.), the profession is a crucial addition
to the interprofessional team for patients with cystic fibrosis to
address the presently unmet needs in the population.</div><div>Individuals with cystic fibrosis may experience a decline in functional
skills required for everyday engagement, specific to motor performance.
Motor performance is essential for everyday life activities like
functional mobility and provides a sense of independence for individuals
across the lifespan. Gruber and colleagues identified a significant
difference in children, ages six to 17, in health related and motor
performance related fitness (<i>p&lt;</i> 0.05)<sup>2</sup>. Findings also displayed a linear progression in
motor performance aligning with peers, until the age of 14 where
children with cystic fibrosis were noted to experience a plateau or
decline in motor performance <sup>2</sup>. Findings support the
need for additional support in motor development for children, an area
supported in the scope of occupational therapy.</div><div>Health management, an area of occupation outlined by the practice
framework of the profession, includes activities specific to enhancing,
maintaining, and developing routines to support health and wellness<sup>1</sup>. Individuals experience increased needs in health
management during the transition period from adolescents into adulthood
where an increase in treatment burden occurs. The transition is linked
to the expectations that young adults will gain independence in managing
their chronic illness. Christian and D’Auria evaluated the effectiveness
of a life skills program focuses on assisting children with cystic
fibrosis in balancing the functional demands of their chronic illness
while supporting psychosocial and developmental deficits<sup>3</sup>. Children in the intervention demonstrated
significant decline in perceived impact of illness
(<i>p&lt;</i> .0001) and significant decline in feelings of
isolation (<i>p&lt;</i> .0001). Findings after the nine month
follow up displayed children in the intervention group were able to
retain the skills learned with significant difference from base line in
the areas of impact of illness and loneliness (<i>p&lt;</i> .01;<i>p&lt;</i> .01, respectively) <sup>3</sup>. Findings
support the need for interventions focused on cognitive skill
development, (e.g., problem solving), social skill development, (e.g.,
social acceptance), and health related functional skill development
(e.g., adherence to treatments). Occupational therapists are uniquely
equipped to address these needs through a health promotional approach to
support children while transitioning into adulthood.</div><div>Knudsen and colleagues sought to understand the association between
medication adherence and depression symptoms with health-related quality
of life in young adults with cystic fibrosis <sup>4</sup>.
Findings showed that 74% of participants reported low adherence to
medications with an additional 18.2% reporting medium adherence.
Researchers also identified that 32.8% of participants reported
symptoms of depression which was associated with low scores in
health-related quality of life. Negative impacts on health-related
quality of life associations include treatment burden and vitality<sup>4</sup>. Associations between low medication adherence and
depressive symptoms were identified. With social work already being a
recognized member of the interprofessional team, an additional provider
to support mental health concerns through client-centered interventions
is crucial. The complex needs in the scope of mental health warrant the
additional support, specific to adherence to medications and health
related quality of life in children and young adults. As displayed by
Knudsen and colleagues, the association between mental health concerns
and medication adherence is apparent; therefore, a professional trained
to support individuals from both aspects is warranted<sup>4</sup>.</div><div>The apparent needs of the population through the outpatient lens are
striking, however the impact while in the hospital is equally as
important in managing the care of children with cystic fibrosis. Hegarty
and colleagues sought to evaluate the quality of life of children during
inpatient hospital stays. Children ranged in age from six to 18 and as
hypothesized, reported lower levels of quality of life in areas of
emotional state, body image, and treatment burden/respiratory symptoms<sup>5</sup>. Researchers did not find significance in a
reduction of lung function; however, children while admitted to the
hospital experienced large declines in quality of life<sup>5</sup>. With the potential for deconditioning, excess
fatigue, and looming weakness during inpatient stays, children with
cystic fibrosis would be best supported by occupational therapy
practitioners to ensure their unmet needs are being met; with the
training and knowledge of an occupational therapist, children would be
supported in a variety of areas of need, making the costs of the
billable service not only warranted, but necessary in the child’s care
plan</div><div>As depicted through an overview of literature, the profession of
occupational therapy is prepared to address the areas through skilled,
billable services; yet these professionals are rarely consulted or
referred to on the team. Lorenzo and Metz (2013) surveyed occupational
therapy practitioners in their knowledge as well as perception of the
role when working with children with chronic respiratory diseases,
including asthma and cystic fibrosis <sup>6</sup>. Researchers
reported that 91% of respondents endorsed a least one role of the
profession with this population <sup>6</sup>. These roles
included: developing efficient ways to complete everyday occupations
(85%), patient education (84%), energy conservation (81%), and
engagement in physical activity (78%) <sup>6</sup>. Findings
supported the addition of an occupational therapists feel prepared to
address the needs of this population, yet little advancements in
bringing occupational therapists onto the team have occurred. Similar
findings were noted through collecting needs assessment information from
professionals in the area during an occupational therapy student
project. A unanimous agreement from occupational therapists and
pediatric physicians was reached that a child with cystic fibrosis would
benefit from outpatient services. Similarly, 75% endorsing the need for
occupational therapy during inpatient/acute services due to pulmonary
exacerbation. However, providers reported rarely utilizing the
profession thus far.</div><div>Upon inquiring with patients and families at a local cystic fibrosis
care center, apparent needs the profession can address were identified,
including life skills (i.e., attention and stress management), mental
health (i.e., coping skills and emotional regulation), medication
management (i.e., identifying/communicating symptoms and managing
medications), and daily needs (i.e., routines and feeding). Being that
the needs of the population span into a variety of areas of occupation,
an occupational therapist would strengthen the interdisciplinary team.
An occupational therapist could be added to the staff in the care
center, supported through a position in an outpatient clinic, and/or
developing supports for inpatient/acute therapy services. In the care
center, grant funding would be secured, similar to funding for other
providers such as social work. In the outpatient and inpatient/acute
therapy setting, services would be billable through CPT codes making
financial restrictions less burdensome.</div><div>Therefore, it is apparent that children with cystic experience an impact
on their quality of life, daily routine, and mental health remain.
Although the literature depicts a clear area of need in the patient
population, the profession of occupational therapy is rarely included.
In order to address the gap in education, one purpose of this manuscript
is to bring awareness to the needs as well as contribute education to
the provider network. With education, providers will be equipped to
identify the unmet needs of the population and include the profession of
occupational therapy in order to ensure the needs are met. During
upcoming rounds, sick visits, or regular scheduled check-ups, consider
if the patient, or family, is expressing concerns that an occupational
therapist can address. A referral to occupational therapy and/or
development of a position, may address these needs and best serve this
population as they progress into adulthood and beyond.</div><div>Words: 1350 /1500</div><div>References</div><div>American Occupational Therapy Association. Occupational therapy practice
framework: Domain and process (4<sup>th</sup> Ed.). Am. J. Occup.
Ther 2020; 74(Suppl. 2): S1-S87.</div><div>Gruber, W, Welsner, M, Dillenhofer, S, Oliver, M, Koerner-Rettberg, C,
Sutharsan, S, Taube, C, Mellies, U, &amp; Stehling, F. Health-related and
motor performance-related fitness and physical activity amoung youth
with cystic fibrosis. Percept Mot Skills 2021; 128(5): 2097-2116.</div><div>Christian, BJ &amp; D’Auria, JP. Building life skills for children with
cystic fibrosis: Effectiveness of an intervention. Nursing Research
2006; 55(5): 300-301.</div><div>Knudsen, KB, Pressler, T, Mortensen, LH, Jarden, M, Skov, M, Quittner,
AL, Katzenstein, T, &amp; Boissen, KA. Associations between adherence,
depressive symptoms, and health-related quality of life in young adults
with cystic fibrosis. Child: care, health, and development 2016; 35(5):
462-468</div><div>Hegarty, M, MacDonald, J, Watter, P, &amp; Wilson, C. Quality of life in
young people with cystic fibrosis: Effects of hospitalization, age and
gender, and differences in parent/child perceptions. Child: Care, health
and development 2008; 35(4): 462-468.</div><div>Lorenzo, RF &amp; Metz, AE. Occupational therapy practitioners’ knowledge
and perceptions of childhood asthma and cystic fibrosis. Occupational
Therapy in Health Care 2013<i>;</i> 27:3: 256-270.</div>