(280) Patient Priorities for Addressing Aging Related Topics During CF Clinic

Thursday, November 3, 2022

12:00 PM – 12:40 PM ET

Presenting Author(s)

Lauren Mitchell, PT, DPT

Physical Therapist
Johns Hopkins Hospital
Mt Airy, Maryland, United States

Co-Author(s)

SA

Sarah Allgood, PhD, RN

Assistant Professor
Johns Hopkins University, School of Nursing, United States
PA

Perry Aulie

United States
LD

Laura Daly

Senior Clinical Nurse
Johns Hopkins University, Adult CF Clinic
Baltimore, Maryland, United States
MD

Marsha E. Davis, RD, LDN, CDCES

Clinical Dietitian Specialist III
The Johns Hopkins Hospital
Baltimore, MD, Maryland, United States
RD

Rebecca H. Dezube, MD, MHS

Assistant Professor
Johns Hopkins University, United States
Jonathan J. Grant, PharmD, BCACP

Pharmacist
Johns Hopkins
BALTIMORE, Maryland, United States
ML

Megan Lagergren, LCSW-C

Clinical Social Worker, United States
NL

Noah Lechtzin, MD

Johns Hopkins University, United States
MM

Meghana Malapaka

United States
JM

Julian McConnie

United States
Kristin A. Riekert, PhD

Professor
Johns Hopkins School of Medicine, Division of Pulmonary & Critical Care Medicine
Baltimore, Maryland, United States
AS

Andrew Scaljon

United States
JS

Jacqueline Stokes, MS, RRT

Respiratory Therapist, United States
Kv

Karen von Berg, PT, DPT

Physical Therapist
Johns Hopkins
Linthicum Heights, Maryland, United States
CM

Christian Merlo

United States

Background: For those living with cystic fibrosis (CF), as life expectancy increases, age-related concerns are expected to change. CF care team members will be expected to address new topics as their patients transition to later stages of life. Understanding which aging related topics patients would most like to have addressed can help care team members prepare for these discussions.

Methods: An anonymous electronic questionnaire was distributed to all adults with CF (AwCF) receiving one CF center’s listserv emails or utilizing electronic medical record messaging. Using a 100-point Likert scale, the questionnaire asked AwCFs to what extent they were interested in having their CF care team address 17 different aging-related topics in the next year. There was also an open-ended question to include other topics which may not have been addressed.

Results: Of about 325 AwCF at this clinic, 135 responded (41%). The mean age was 41 years (range 22-76). Respondents were 57% female, 41% male, and 1% non-binary. Self-reported race/ethnicity was 91% white, 4% Hispanic, 3% Black and < 1% of each: Asian, multi-racial or no response. Mean interest in having topics addressed ranged from 9 – 79 out of 100 (Figure 1). Bone health was a top 1 or 2 priority throughout all age groups, additionally, coordinating medications and balancing multiple medical conditions remained in the top quartile. With increasing age, focus on Medicare medication costs and frailty increased, while retirement planning, life insurance, general health screenings and identifying providers decreased in importance. Menopause and transitioning to Medicare were low priority for all ages except the 40-year-old group and the 50-year-old group respectively. Mental health and pregnancy/family-planning were the two most frequent responses to the open-ended question with mental health spanning all age groups and pregnancy/family-planning only represented under the age of 35.

Conclusions: A variety of aging related topics are on the minds of AwCFs . Bone health, balancing multiple medical conditions and coordinating medications seems to transcend age groups and were high priority to all, this may indicate a need for global education and attention at this clinic. When looking at priorities based on decade of life, the priorities varied, thus it is important to consider a person’s age when addressing these topics. Mental health and pregnancy/family-planning had not been identified as aging related since they do not grow in relevancy as an AwCF approaches or exceeds 50, however, the frequency with which they were reported warrants consideration. Likely, with increasing life expectancy and improved health outcomes, people living with CF are shifting their attention towards these areas of life and are generally looking for guidance. Additionally, it’s important to acknowledge that gender likely affected several of the topics, such as menopause and urinary incontinence, and may deserve further investigation. Overall, AwCFs are looking to have their CF care team engage in conversations related to aging. Care team members should ensure they have expertise in topics that previously were not needed such as: financial planning (Medicare, life insurance, retirement) reproductive health (family planning, menopause) and health conditions that increase with age (arthritis, frailty, managing multiple comorbidities). They should also begin integrating these topics into their regular patient care as appropriate based on the AwCF’s stage of life.

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