Adherence and Barriers to Inpatient Physical Therapy Among Adolescents and Young Adults with Hematologic Malignancies

Abstract

This study described inpatient physical therapy (PT) adherence and barriers to inpatient PT among adolescents and young adults (AYAs) with hematologic malignancies receiving care at a Midwestern children's hospital. Forty-seven AYAs receiving care over a 2-year period were included. PT contact was established in 93% of hospitalizations. AYAs declined an average of 34% of PT visits, resulting in PT visits on 27% of hospitalized days, 1 day less than the goal of 3 days a week. The most frequent reasons for decline included: AYA sleeping (22%), AYA undergoing medical procedure (18%), and AYA not feeling well (12%).

Introduction

Leukemia, non-Hodgkin's lymphoma, and Hodgkin's lymphoma are 3 of the 10 most common cancers among adolescents and young adults (AYAs, ages 15–39 years).¹ Although advances in clinical care and treatment protocols have improved survival rates,¹ these therapies continue to cause significant acute and long-term toxicities. Chemotherapy can lead to acute and long-term neuromuscular and musculoskeletal complications including gait abnormalities,² pain,³ decreased range of motion,⁴ and decreased strength.^4–6 In addition, treatment for AYAs with hematologic malignancies often includes extended hospitalizations during which AYAs may struggle to be physically active.⁷ In a study conducted in Germany, adolescents with cancer reported a 95% reduction in their physical exercise during inpatient hospitalizations and 40% of participants with leukemia remained in bed for 23 of 24 hours a day.⁸ Treatment-related side-effects and extended hospitalizations limit daily mobility and, as a result, place AYAs with hematologic malignancies at an increased risk of cardiorespiratory deficits^9,10 and cardiovascular disease.¹¹

One method of minimizing or reversing these declines^12,13 and the long-term functional consequences of cancer treatment^14,15 is to engage AYAs with hematologic malignancies in regular daily mobility activities. Physical therapy (PT) promotes daily mobility and addresses the physical side-effects of cancer treatment and consequences of prolonged hospitalizations.¹⁴ As a result, PT is increasingly recognized as a core component of AYA cancer treatment.^7,12,13

Unfortunately, trials of PT interventions suggest that children with cancer struggle to adhere to inpatient visit schedules and as a result, are unlikely to capitalize on the potential benefits of PT.^16–18 Nonadherence to other components of treatment regimens (e.g., medication) peaks during the AYA period,^19,20 suggesting that the nonadherence to inpatient PT found in younger children with cancer may also be present among AYAs. Research to date, however, has not yet investigated inpatient PT adherence among AYAs with hematologic malignancies.

Without an understanding of how often and why AYAs are nonadherent to inpatient PT, clinicians have little guidance as to how to maximize PT engagement. As a result, an important next step for the field and the purpose of this study is to begin to explore inpatient PT adherence among AYAs with hematologic malignancies. The primary aim of this study was to describe the frequency of nonadherence to inpatient PT visits (as measured by completed and declined PT visits). The secondary aim was to summarize barriers to inpatient PT adherence.

Methods

This study included AYAs with hematologic malignancies who were hospitalized at a Midwestern children's hospital between January 1, 2018 and December 31, 2019. The hospital's Institutional Review Board approved all study procedures, including a waiver of consent.

Participants and procedures

A retrospective chart review was conducted to identify AYAs (ages 15–39 years²¹ at the time of hospitalization) with a diagnosis of leukemia or lymphoma. AYAs with leukemia or lymphoma were included in this study if they had at least one ≥7-day hospitalization between January 1, 2018 and December 31, 2019. There were no exclusion criteria. Variables were extracted from the electronic medical record by trained study staff using a standardized data extraction form.

PT service

At our facility, to maximize consistency, a referral for PT is preselected in the order set for an oncology inpatient admission. This referral can be “deselected” by the admitting provider. Once the referral is received, a physical therapist attempts to complete an initial evaluation within one business day. For referrals placed on Saturday or Sunday, the initial evaluation is typically completed on the following Monday. Weekend evaluations may be conducted for AYAs who have an imminent discharge, are awaiting PT clearance to advance mobility or activity, would be negatively impacted by a 2-day lapse in service, or have high-priority needs (e.g., equipment/education needs before discharge).

Following the initial evaluation, individualized PT goals (i.e., target skills) are set for each AYA based on their diagnosis, equipment needs, training, level of independent exercise, and functioning. Consistent with guidelines for exercise dosing to achieve strength and endurance goals,²² it is our goal that AYAs engage in at least three PT visits each week. Due to the staffing structure, PT visits are generally conducted on weekdays. A note is created in the electronic medical record to document each day PT attempted or completed a visit. This documentation includes the session duration (number of minutes spent in PT) and PT intervention(s) (if a visit was completed) or reason(s) for decline (if a visit was declined).

Measures

PT data were collected at the hospitalization level as each AYA could have more than one hospitalization. A hospitalization was defined as having established PT contact if the AYA engaged in at least one visit (i.e., initial evaluation) during that hospitalization. For each hospitalization with established PT contact, three variables were extracted: (1) the number of days with one or more PT attempts; (2) the number of days with one or more PT declines; and (3) the number of days with a completed PT visit. To achieve therapeutic goals (e.g., strengthening), PT targets engaging AYAs in PT 3 days a week. Three variables were computed to evaluate adherence to this guideline: (1) the percentage of declined PT visits, $(\frac{n d a y s w i t h a d e c l i n e d P T v i s i t}{n d a y s w i t h a P T a t t e m p t} \times 100)$ ; (2) the percentage of hospitalized days on which a PT visit was completed, $(\frac{n d a y s w i t h a c o m p l e t e d P T v i s i t}{n d a y s h o s p i t a l i z e d} \times 100)$ ; and (3) a dichotomous indicator of whether three or more PT visits were completed each week during the hospitalization. The average time from admission to the first PT visit (in days) and the average minutes spent in PT per week were also computed.

To explore barriers to PT adherence, the reason(s) for decline was extracted from the PT contact note. As physical therapists may attempt to visit an AYA multiple times a day, AYAs may have multiple “reasons for decline” in a single day. The first two authors created a list of codes based on published barriers to PT adherence.²³ The first two authors then independently coded 5% of the data using this coding scheme. Results were compared and discrepancies and coder notes (e.g., need for a new code) were used to inform refinements to the coding scheme. Each code in the final coding scheme was present at least once in the data and each final code is represented in column 1 of Table 3.

Demographic and clinical covariates

Demographic and clinical information (age, sex [assigned at birth], race, ethnicity, and diagnosis) was obtained through an electronic medical record review. AYA race and ethnicity may not always be captured within the medical record and these variables were not validated with current AYA/family self-report. Diagnoses were categorized by a pediatric oncologist (senior author) as “acute lymphoblastic leukemia,” “acute myeloid leukemia,” “non-Hodgkin's lymphoma,” “Hodgkin's lymphoma,” “chronic myeloid leukemia,” or “acute promyelocytic leukemia.”

Data analysis

All computed variables were independently calculated by two authors and then compared. The authors achieved agreement on 94% of the variables following the initial coding. All identified discrepancies (6% of variables) were resolved through discussion and consultation with the original data source. Descriptive statistics were computed in Excel and used to summarize all variables.

Results

From January 1, 2018 to December 31, 2019, 47 AYAs had at least one ≥7-day hospitalization. All ≥7-day hospitalizations were included for each AYA, meaning that multiple hospitalizations could be included for a given AYA. Nineteen AYAs (40%) had >1 hospitalization. Across all AYAs, there were 84 hospitalizations and the duration of and reason for each hospitalization are summarized in Table 1. The sample included a relatively even distribution of male and female AYAs and the majority of the sample identified as white. Demographic and clinical characteristics are presented in Table 1.

Table 1.

Participant and Hospitalization Characteristics (n = 47)

Participant characteristics	n (%)
Age in years, M (SD)	21.26 (4.87)
Sex
Male	24 (51)
Female	23 (49)
Race^a
White	36 (77)
Black or African American	2 (4)
Asian	1 (2)
Other race	4 (9)
Ethnicity^b
Hispanic	3 (6)
Non-Hispanic	42 (89)
Diagnosis
Acute lymphoblastic leukemia	22 (47)
Acute myeloid leukemia	12 (26)
Non-Hodgkin's lymphoma	5 (11)
Hodgkin's lymphoma	4 (8)
Chronic myeloid leukemia	3 (6)
Acute promyelocytic leukemia	1 (2)
Number of hospitalizations, M (SD)	1.79 (1.21)

Hospitalization characteristics (n = 84)	n (%)
Duration, M (SD)	33.67 (37.45)
Reason for hospitalization
Planned treatment	36 (43)
New diagnosis	26 (31)
Complications	22 (26)

n = 4 missing.

n = 2 missing.

M, mean; SD, standard deviation.

Contact with PT was established in 93% of hospitalizations. On average, the first PT visit occurred within 3 days of admission (Table 2). Physical therapists attempted PT visits on an average of 41% of days during the hospitalization. AYAs declined an average of 34% of PT visits, resulting in completed PT visits on 27% of hospitalized days. Adherence to the recommended dose of 3 PT visits/week was achieved in 14% (n = 12) of hospitalizations. The most frequent documented reasons for decline included: patient sleeping (n = 126 [22%]), patient undergoing medical procedure (n = 103 [18%]), and patient not feeling well (n = 70 [12%]). Reasons for decline are summarized in Table 3.

Table 2.

Physical Therapy Uptake

Variable	M (SD)	Range
Days from admission to first PT visit	2.51 (2.67)	0–14
Percentage of days with PT attempts	41.07 (17.83)	0–85.71
Percentage of declined visits	34.15 (22.47)	0–83.33
Percentage of days with PT visits	26.62 (14.38)	0–61.90
Minutes of PT per week	55.97 (40.70)	0–167.53

PT, physical therapy.

Table 3.

Documented Reasons for Declining Physical Therapy Visits

Code	n (%)	Representative quote
Physical State
Sleeping	126 (22)	“Patient…in light sleep state and unable to maintain arousal following pain medication administration”
Not feeling well	70 (12)	“Patient declined therapy for the week due to side effects of chemotherapy” “Patient declining PT at this time. States he went for walk earlier and legs are sore.” “Patient having emesis at time of attempts to offer PT services”
Feeling fatigued/tired	14 (2)	“Father stating he was too tired following sedating medication he receives every Tuesday” “Patient exhausted following shower” “Patient very fatigued after occupational therapy session”
Engaged in other medical activities
Undergoing medical procedure	103 (18)	“Patient off the unit for procedure” “Patient off unit at radiation” “Patient undergoing ultrasound” “Patient off unit for lumbar puncture and bone marrow aspirate”
Engaged with other medical provider	49 (8)	“Patient with respiratory therapist” “Working with holistic health”
Family decision
Patient choice	40 (7)	“Patient declined in spite of encouragement” “Patient asking to ‘cancel’ therapies today due to having a hectic day” “Patient requesting to hold therapies this date regardless of education it was okay to get up with drain and benefits of participation”
Parent choice	5 (<1)	“Patient was transferring back to bed…Patient was short of breath and mother quickly requested therapist leave the room”
Medical status
Inappropriate medical status per team	31 (5)	“Attempted to see patient for evaluation but nursing requested hold due to patient just finding out about his relapse and very anxious” “Per nurse, patient with cardiac abnormalities” “Patient spiked a fever”
Preparing for discharge or transfer	17 (3)	“Patient transferred to pediatric intensive care unit due to change in medical status”
Engaged in other recreational/daily activities
Out of room	26 (4)	“Patient ambulating in hallway”
Plans with family/friends	23 (4)	“Patient declined PT stating that she would prefer to conserve energy to play with 18 month old son later today” “Today is patient's birthday and family present for celebration” “Awaiting arrival of friends, with plan to ambulate to concourse with them”
Eating	15 (3)	“Patient eating and request to finish her food prior to PT session” “Patient awaiting breakfast”
Showering	7 (1)	“Patient declining therapy due to preparing to shower”
Engaged in other recreational activities	5 (<1)	“Patient resistant to therapy due to being engaged in video game with his friends overseas/back home.”
Resources
Additional resources requested	10 (2)	“Asked to come back later with yoga ball” “Patient declining therapy in setting of recent fever due to preference for going to therapy room which he is unable to do until afebrile for 24 hours”
PT unavailable at preferred time	4 (<1)	“Therapist was notified of patient's return at 5:31 pm. At that time, therapist was unable to return for session.”
Motivation and emotion
Not motivated	3 (<1)	“Patient not motivated”
Emotional difficulties	2 (<1)	“Patient with agitation”
Other
No description	22 (4)
Unavailable—no other description	10 (2)
Nursing hold requested—no other description	2 (<1)

Discussion

This retrospective review of PT use among AYAs with hematologic malignancies receiving care at one Midwestern children's hospital indicated high rates of initial PT engagement. In >90% of 7-day or longer hospitalizations, our physical therapists were successful in conducting an initial evaluation with AYAs. Ensuring adherence to regular PT visits, however, proved more difficult as one-third of PT visits were declined. The high number of declines resulted in PT visits on 27% of hospitalized days. As the goal of 3 days per week was only achieved in 14% of hospitalizations, improving PT adherence will be critical to ensuring that AYAs participate in enough visits to realize the potential strength and endurance benefits of PT.²²

To begin to understand what needs to be done to improve PT adherence, we also explored barriers to inpatient PT adherence among AYAs with hematologic malignancies. Similar to a study including German children undergoing intensive cancer treatment,²³ we identified barriers related to the participant's physical state, resources, and motivational and emotional state. In addition, we identified barriers not previously described in the literature related to engagement in recreational/daily activities, engagement in other medical activities, inappropriate medical status, and patient preference. This expanded list of barriers increases our foundational understanding of why AYAs may be nonadherent to inpatient PT.

Although some barriers identified in this study are not easily modifiable (e.g., inappropriate medical status), many are amenable to interventions delivered at the patient, clinician, or hospital level.^24,25 For example, as sleep was identified as the most common barrier, assessing each AYA's sleep schedule and planning PT visits for times when that patient is typically awake (e.g., in the evenings) may increase adherence. The second most common barrier, “undergoing medical procedure,” also represents a scheduling conflict and may be addressed by efforts to improve communication among the medical/bedside team and PT.

Designing developmentally appropriate interventions that target these modifiable barriers may increase PT adherence. To our knowledge, there are no published studies evaluating interventions to promote inpatient PT adherence in AYA oncology. As a result, additional research is needed to develop and test strategies for addressing barriers including those identified in this study.

Several additional future directions are highlighted by the limitations of the proposed research. First, as our goal was to engage AYAs in an optimal dose of PT 3 times a week, this study focused on adherence to this guideline. Delivering optimal PT care, however, also requires multidisciplinary team adherence (e.g., adherence to referral guidelines [when and for whom a referral should be placed]) and AYA adherence to aspects not assessed in this study (i.e., postdischarge PT). Second, although our conceptualization of adherence assumes that AYAs and physical therapists agreed on the 3-day/week plan, this assumption was not examined. Third, this retrospective chart review study relied on data from PT documentation and AYA and/or family perception of barriers may differ from those of the physical therapist. Fourth, this study was conducted at a single site.

To address these limitations and provide a more comprehensive understanding of PT adherence among AYAs with hematologic malignancies, future prospective studies should assess multiple facets of PT adherence, elicit barriers directly from AYAs and/or families, and include hospitals with different clinical practices (e.g., referral practices, PT resources) and more diverse patient populations. In summary, this study provides a baseline understanding of adherence and barriers to inpatient PT among AYAs with hematologic malignancies, a critical first step in informing efforts to improve PT care.

Footnotes

Acknowledgment

Gabriella A. Breen, B.S. is gratefully acknowledged for her assistance with data extraction and article formatting.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received for this article.

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