The association of health status and cancer history of young adult survivors of childhood cancer with parental accompaniment to survivorship clinic visits

Abstract

Purpose

Adult childhood cancer survivors are frequently accompanied by a parent to survivorship clinic. From clinical evaluations among young adult survivors of childhood cancer we aimed to (1) investigate the association between accompaniment and the survivors’ health complexity; and (2) determine whether accompaniment is associated with adherence to recommended surveillance tests and follow-up in clinic.

Methods

This was a cross-sectional study of all patients ≥ 18 years old at their first visit to the regional Yale Childhood Cancer Survivorship Clinic from 2003 to 2018. Patients underwent standardized evaluations for medical, neurocognitive, and emotional late effects of therapy; individuals accompanying patients were documented.

Results

The 168 patients were a median of 12.0 (range: 0–17.9) years at diagnosis and 22.7 (range: 18.1–39.9) years at evaluation, and 45.8% were accompanied by a parent. In multivariable analyses, 18.0–24.99 years vs. 25.0–39.99 years at visit (OR = 3.43, p = 0.022) and central nervous system (CNS) tumor diagnosis (OR = 6.09 vs. leukemia/lymphoma diagnosis, p = 0.010) were significantly associated with parental accompaniment. Accompaniment was not associated with number and severity of medical late effects, neurocognitive impairment, or emotional distress. Accompaniment was not associated with completed surveillance tests or a clinic follow-up within 2 years.

Conclusion

Forty-six percent of survivors were accompanied by a parent, and accompaniment was not associated with survivor health status. Accompaniment was not associated with adherence to recommended surveillance tests or clinic follow-up.

Background

As therapies for childhood cancers improve, more children diagnosed with cancer are becoming long-term survivors [29]. This population, however, is at high risk for many therapy-related late effects, including cardiopulmonary disease, endocrinopathies, and neurocognitive problems [28, 38]. The Institute of Medicine, American Academy of Pediatrics, and other oncology organizations recommend that childhood cancer survivors receive lifelong comprehensive survivorship care including long-term surveillance for late effects [1, 8, 17]. However, rates of adherence to survivorship care recommendations among young adults remain low [25, 40]. Many survivors who transition to survivorship care are accompanied by parents to the survivorship clinic visit [12, 32]. Among older adults with chronic illness, accompaniment by a family member to medical appointments is associated with medical complexity of the patient and with improved adherence to recommendations [7, 11, 39]. Identifying whether medical complexity and/or adherence to recommended surveillance is associated with parental accompaniment will help us better understand the needs and inform the clinical care of this growing population of pediatric cancer survivors.

Young adult survivors of childhood cancer who attend survivorship clinic visits are approximately 2.5 times more likely to be accompanied by parents than are young adults with juvenile-onset diabetes attending adult diabetes clinic and about 4.4 times more likely than young adults seeing their general internist for a well visit [32]. Prior studies have investigated parental motivation for accompanying young adult survivors of childhood cancer to survivorship clinic visits. Findings suggest parents may accompany adult survivors out of their perceived concern about the survivor’s health, their sense of duty or obligation to accompany the survivor, or to provide practical assistance [12, 21].

The extent to which patient attributes, rather than parental ones, contribute to accompaniment is not well-understood. Neither diagnosis nor treatment intensity was associated with parental accompaniment in some smaller cancer studies [12, 32]. However, in other non-cancer patient populations, adults with worse mental and physical health are more likely to be accompanied by a family member [39]. By obtaining a range of objective measures of medical complexity (e.g., medical, neiuocognitive, and emotional late effects) based on systematic clinical assessments in a large cohort of young adult survivors of childhood cancer, we will gain improved understanding of the patient factors associated with parental accompaniment. Survivors with complicated health status may need additional support. This information can guide clinical care teams in facilitating successful transitions to survivorship care in patient subgroups as well as inform future interventions.

Parental accompaniment is also important to understand as a predictor of follow-up healthcare. Studies among adults with heart failure, cystic fibrosis, and other chronic health conditions show that those who are accompanied by family members to medical appointments had higher self-care maintenance and medical adherence [7, 11, 39]. With knowledge deficits [18], maturational lags [13], and a complicated insurance system, having a parent available to guide the adult pediatric cancer survivor may enhance adherence to recommended screenings and follow-up clinic visits.

Among young adult survivors attending their first visit at the regional Yale Childhood Cancer Survivorship Clinic, our study aimed to determine if parental accompaniment is associated with (1) number and severity of medical late effects, neiuocognitive impairment, and emotional distress; and (2) adherence to recommended follow-up, including completed tests and attendance at a subsequent survivorship clinic.

Methods

Study design and participants

This was a cross-sectional study of all young adult survivors of childhood cancer with a cancer diagnosed at age < 18 years and at least 1 year from completion of all cancer therapy who were 18–39.99 years at the time of their first visit to the regional Yale Childhood Cancer Survivorship Clinic from June 2003 to July 2018. It is routine clinical practice at Yale Pediatric Hematology/Oncology to refer all off-therapy patients for recommended screening and preventative health education regarding potential late effects from treatment, separate from recurrence monitoring with their primary oncologist. Referral to the Yale Childhood Cancer Survivorship Clinic is first made at 2 years post-therapy, but the timing of patients’ first survivorship clinic visits could potentially vary by patient preference. At survivorship clinic visits, an oncologist obtains a medical history, completes a review of systems, performs a physical exam, and orders surveillance tests for late effects according to the Children’s Oncology Group (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers [8]. Patients also receive cognitive and mental health screenings consisting of an interview by a psychologist specialized in survivorship and completion of patient-report psychological instruments.

This study was approved by the Yale Human Investigation Committee (Institutional Review Board, #0707002837) and has been performed in accordance with the ethical standards as laid down in the 1964 Declaration of Helsinki and its later amendments. Patients provided written consent for their medical information to be used for research purposes.

Study measures

Patient characteristics and cancer history

Sociodemographic variables of age at first survivorship visit, sex, race, insurance type (private versus public/self/none), and marital status (yes/no) were abstracted from medical records. Cancer-related variables included diagnosis, age at diagnosis, duration of treatment, time elapsed since treatment, and cranial radiation exposure (yes/no). Treatment intensity was categorized using the Intensity of Treatment Rating Scale 3.0 (1-least intensive, 2-moderately intensive, 3-very intensive, and 4-most intensive). [19]

Parental accompaniment

Parental accompaniment was documented in clinic visit notes, defined as the presence or absence of a parent or legal guardian at the survivorship clinic visit.

Medical late effects

Number and severity of medical late effects were abstracted from available medical records. Medical late effects were graded using the National Cancer Institute Common Terminology Criteria for Adverse Events (CTCAE) (grade 1-mild, grade 2-moderate, grade 3-severe, and grade 4-life-threatening). [26]

Medical adherence

The following information was abstracted from medical records: (1) referral (yes/no) for echocardiogram (ECHO), dual energy X-ray absorptiometry (DEXA), pulmonary function, and audiometry tests based on COG Long-term Follow-up Guidelines at the time of the survivorship clinic visit; (2) completion of referred tests within 1 year of recommendation; and (3) follow-up in survivorship clinic within 2 years of the initial visit.

Neurocognitive impairment

Neurocognitive impairment was determined from a structured interview with a psychologist as well as from patient report on validated instruments. Patients were categorized as having neurocognitive impairment if they reported having received special education services, had diagnosis of Attention-Deficit/Hyperactivity Disorder or prescribed psychotropic medication to address attention deficits, and/or scored in the impaired range on the Behavior Rating Inventory of Executive Function–Adult Version (BRIEF-A) [34] or the Patient-Reported Outcomes Measurement Information System (PROMIS) v2.0 Cognitive Function [16]. We transitioned from the BRIEF-A to the PROMIS measures in 2016.

The BRIEF-A is a well-validated, 75-item self-report tool that assesses dimensions of executive functioning, such as emotional control, working memory, and organization [34]. The BRIEF-A demonstrates strong psychometric properties (internal consistency of 0.98, 4-week test-retest stability of 0.92–0.93) and validated for use in numerous clinical populations, including adult childhood cancer survivors [27]. We used the Global Executive Composite, a summary scale that encompasses all dimensions of executive function. As defined by the test authors, a T score ≥ 65 signifies clinical impairment [34].

The PROMIS v2.0 Cognitive Function is a 32-item, 5-point Likert scale assessing memory, processing speed, and concentration. This instrument has been validated in adults with chronic health conditions, as well as in adult cancer survivors [3, 24]. Patients with scores at least 1.5 standard deviation below the mean (i.e., T score ≤ 35) were categorized as having neurocognitive impairment [15].

Emotional distress

Emotional distress (yes/no) was determined from a structured interview with a psychologist and/or from patient-report on validated instruments. A patient was categorized as having emotional distress if they had active or history of mental health problems, including use of psychotropic medications, psychotherapy, received a referral for mental health services as assessed by the psychologist, and/or scored in the impaired range on the Brief Symptom Inventory-18 (BSI-18) [10] or PROMIS-29 Profile v2.0 [16]. We transitioned from the BSI-18 to the PROMIS measures in 2016.

The BSI-18 is a self-report 18-item questionnaire that assesses depression, anxiety, and somatization with a 5-point Likert scale [10]. The BSI-18 has strong psychometric properties and has been used widely in adult survivors of childhood cancer [31]. As defined in the manual, a patient is considered a positive risk if the Global Severity Index T score is ≥ 63 or if any two of the subscales (depression, anxiety, somatization) have a T score ≥ 63 [10].

The PROMIS–29 Profile v2.0 is a health-related quality of life inventory evaluating seven domains. The Anxiety and Depression domains were used to assess emotional distress and have been used in adults with chronic health conditions, including cancer [6, 9]. Patients with scores 1.5 standard deviations equal to or greater than the mean (i.e., T score ≥ 65) on either scale were categorized as having emotional distress [15].

Statistical analysis

Patient demographic and health characteristics were examined with descriptive statistics. Logistic regression was used for univariate analysis to calculate odds ratios for the association between participant characteristics and parental accompaniment (yes/no). Multivariable models were analyzed using logistic regression, including statistically significant (p < 0.05) or marginally significant (p < 0.10) variables identified through univariate analyses. Univariate and multivariable analyses were repeated in stratified analyses examining patients 18.0–24.99 years and those ≥ 25.0 years separately. These age categories were used as 18–25 years is defined as the developmental stage of emerging adulthood [2]. Risk ratios were calculated to determine the association between accompaniment and completed referrals and attendance at a follow-up clinic. The SAS software version 9.4 was used for all analyses (SAS Institute Inc., Cary, NC).

Results

Participant characteristics

The study included 168 survivors with median age 22.7 (range: 18.1–39.9) years at the time of the first survivorship clinic visit (Table 1). Median age at diagnosis was 12.0 (range: 0–17.9) years, with diagnoses of leukemia/lymphoma (63.1%), central nervous system (CNS) tumor (9.5%), and sarcoma or other non-CNS solid tumor (27.4%). Survivors ≥ 18 years at the time of the first visit, i.e., eligible for this analysis, were more likely to be female, white, and older at diagnosis than those survivors who were < 18 years of age at their first survivorship clinic visit.

Table 1.

Survivor characteristics (N = 168)

Age at first survivorship clinic visit, years, median (range)	22.7 (18.1–39.9)
Age at first survivorship clinic visit, years, N (%)
18.0–24.99	112 (66.7)
25.0–39.99	56 (33.3)
Sex, N (%)
Male	66 (39.3)
Female	102 (60.7)
Race, N (%)
White	149 (88.7)
Non-white	19 (11.3)
Insurance, N (%)
Private	122 (75.8)
Public/self/none	39 (24.2)
Married, N (%)
Yes	20 (11.9)
No	148 (88.1)
Age at diagnosis, years, median (range)	12.0 (0–17.9)
Duration of treatment, years, median (range)	1.1 (0–15.5)
Time elapsed since treatment, years, median (range)	10.2 (1.6–29.8)
Diagnosis, N (%)
Leukemia/lymphoma	106 (63.1)
CNS tumor	16 (9.5)
Sarcoma/other non-CNS solid tumor	46 (27.4)
Cranial radiation, N (%)
Yes	35 (20.8)
No	133 (79.2)
Treatment intensitya, N (%)
1 - Least intensive	5 (3.0)
2 - Moderately intensive	72 (42.9)
3 - Very intensive	62 (36.9)
4 - Most intensive	29 (17.2)
Number of medical late effects, N (%)
0–1	46 (27.4)
≥2	122 (72.6)
Any medical late effect grade 3 or 4b, N (%)
Yes	77 (45.8)
No	91 (54.2)
Impaired neurocognitive functioningc, N (%)
Yes	29 (17.3)
No	139 (82.7)
Emotional distressd, N (%)
Yes	74 (44.0)
No	94 (56.0)

Numbers may not sum to totals due to missing data

CNS central nervous system

^aScaled using the Intensity of Treatment Rating Scale 3.0¹⁶

^bGraded using the National Cancer Institute Common Terminology Criteria for Adverse Events (CTCAE)¹⁷

^cMeasured with the Behavior Rating Inventory of Executive Function (BRIEF)-Global Executive Composite (before 2016) or the Patient-Reported Outcomes Measurement Information System (PROMIS)-Cognitive Function (after 2016)^18,22

^dMeasured with Brief Symptom Inventory-18 (BSI-18)-Global Severity Index (before 2016) or the Patient-Reported Outcomes Measurement Information System (PROMIS)-29 Profile (after 2016)^22,23

Parental accompaniment

Seventy-seven (45.8%) patients were accompanied to their first survivorship clinic visit by at least one parent. Of those accompanied by at least one parent, 65 (84.4%) were accompanied by their mothers, 7 (9.1 %) were accompanied by their fathers, and 5 (6.5%) were accompanied by both parents. Additionally, 13 patients were accompanied by another relative (N = 2) or a spouse/partner (N = 11).

Factors associated with parental accompaniment

In unadjusted univariate logistic regression analyses (Table 2), being 18.0–24.99 years compared with 25.0–39.99 years at first survivorship clinic visit (OR = 5.07, 95% CI, 2.42–10.63, p < 0.0001), less time elapsed since treatment completion (OR = 1.09 per year, 95% CI, 1.04–1.15, p < 0.001), and diagnosis of CNS tumor (OR = 3.77 compared with leukemia/lymphoma, 95% CI, 1.14–12.44, p = 0.030) were significantly associated with parental accompaniment. Sex, insurance type, marital status, age at diagnosis, duration of treatment, cranial radiation exposure, treatment intensity, number and severity of medical late effects, neurocognitive impairment, or emotional distress were not associated with parental accompaniment. In multivariable analyses (Table 3), younger age (18.0–24.99 years) at first survivorship clinic visit (OR = 3.43, 95% CI, 1.19–9.86, p = 0.022) and diagnosis of CNS tumor (OR = 6.09, 95% CI, 1.55–23.94, p = 0.010) remained significantly associated with parental accompaniment.

Table 2.

Unadjusted univariate logistic regression analyses of the association of survivor characteristics with being accompanied by a parent to the first survivorship clinic visit

Characteristic	Frequency of parental accompaniment N (%)	OR (95% CI)	p value
Sociodemographic
Age at first survivorship clinic visit, years
25.0–39.99	12 (21.4%)	Ref.
18.0–24.99	65 (58.0%)	5.07 (2.42, 10.63)	<0.0001
Sex
Female	47 (46.1%)	Ref.
Male	30 (45.5%)	0.98 (0.52, 1.82)	0.94
Insurance
Private	55 (45.1%)	Ref.
Public/self/none	18 (46.2%)	1.04 (0.51, 2.15)	0.91
Married
Yes	0 (0%)	Ref.
No	77 (52.0%)	>999.999 (<0.001, >999.999)	0.96
Cancer diagnosis and treatment
Age at diagnosis, per year	-	1.00 (0.94, 1.06)	0.91
Duration treatment, per year	-	0.88 (0.73, 1.07)	0.21
Less time elapsed since treatment, per year	-	1.09 (1.04, 1.15)	<0.001
Diagnosis
Leukemia/lymphoma	47 (44.3%)	Ref.
Central nervous system (CNS) tumor	12 (75.0%)	3.77 (1.14, 12.44)	0.030
Sarcoma/other non-CNS solid tumor	18 (39.1%)	0.81 (0.40, 1.63)	0.55
Cranial radiation
No	57 (42.9%)	Ref.
Yes	20 (57.1%)	1.78 (0.84, 3.77)	0.13
Treatment intensitya
4 - Most intensive	10 (34.5%)	Ref.
3 - Very intensive	30 (48.4%)	1.78 (0.71, 4.44)	0.22
1 - Least or 2 - moderately intensive	37 (48.1%)	1.76 (0.72, 4.27)	0.21
Late effects of cancer treatment
Number of medical late effects
≥2	54 (44.3%)	Ref.
0–1	23 (50.0%)	1.26 (0.64, 2.48)	0.51
Any medical late effect grade 3 or 4b
No	43 (47.3%)	Ref.
Yes	34 (44.2%)	0.88 (0.48, 1.62)	0.69
Impaired neurocognitive functioningc
No	62 (44.6%)	Ref.
Yes	15 (51.7%)	1.33 (0.60, 2.97)	0.48
Emotional distressd
No	46 (48.9%)	Ref.
Yes	31 (41.9%)	0.75 (0.41, 1.39)	0.36

CNS central nervous system

^aScaled using the Intensity of Treatment Rating Scale 3.0¹⁶

^bGraded using the National Cancer Institute Common Terminology Criteria for Adverse Events (CTCAE)¹⁷

^cMeasured with the Behavior Rating Inventory of Executive Function (BRIEF)-Global Executive Composite (before 2016) or the Patient-Reported Outcomes Measurement Information System (PROMIS)-Cognitive Function (after 2016)^18,22

^dMeasured with Brief Symptom Inventory-18 (BSI-18)-Global Severity Index (before 2016) or the Patient-Reported Outcomes Measurement Information System (PROMIS)-29 Profile (after 2016)^22,23

Table 3.

Multivariable logistic regression analysis of the association of survivor characteristics with being accompanied by a parent to the first survivorship clinic visit

Characteristica	OR (95% CI)	p value
Age at first survivorship clinic visit, years
25.0–39.99	Ref.
18.0–24.99	3.43 (1.19, 9.86)	0.022
Less time elapsed since treatment, per year	0.95 (0.88, 1.02)	0.18
Diagnosis
Leukemia/lymphoma	Reference
CNS tumor	6.09 (1.55, 23.94)	0.010
Sarcoma/other non-CNS solid tumor	0.96 (0.44, 2.11)	0.92

CNS central nervous system

^aVariables included in the final model based on forward selection of all statistically significant (p < 0.05) or marginally significant (p < 0.10) variables identified through unadjusted univariate logistic regression analyses

Age-stratified cohorts

Analyses of age-stratified cohorts (18.0–24.99 years and 25.0–39.99 years) were performed to determine if factors associated with accompaniment differed in young participants versus older participants. As in the overall cohort, younger age at first survivorship clinic visit was significantly associated with parental accompaniment in both cohorts (supplementary information Tables S3 and S6). No other variables were significantly associated with parental accompaniment for either age-stratified cohort.

Medical adherence

Parental accompaniment was not associated with completion of recommended tests or with attendance at a follow-up survivorship clinic visit (Table 4).

Table 4.

Risk ratios of adherence to surveillance referrals according to accompaniment by a parent to the first survivorship clinic visit

Surveillance referral	Accompanied survivors who completed referral N (%)	Unaccompanied survivors who completed referral N (%)	RR* (95% CI)	p value
ECHOa	60 (96.8)	69 (72.0)	1.05 (0.97, 1.14)	0.22
DEXAa	38 (84.4)	45 (80.4)	1.05 (0.88, 1.26)	0.59
PFTsa	23 (85.2)	29 (78.4)	1.09 (0.86, 1.37)	0.48
Audiology exama	11 (55.0)	6 (54.5)	1.01 (0.52, 1.97)	0.98
Follow-up survivorship clinic visitb,c	25 (34.2)	36 (41.4)	0.83 (0.55, 1.24)	0.36

ECHO, echocardiogram; DEXA, dual energy X-ray absorptiometry; PFTs, pulmonary function tests

^*Calculated with log-binomial regression

^aWithin 1 year of first survivorship clinic visit

^bWithin 2 years of first survivorship clinic visit. Eight patients excluded from analysis because they had not reached end of 2-year window

^cEight patients were missing data about whether a follow-up survivorship clinic visit was completed

Discussion

In this large cross-sectional study of young adult survivors of childhood cancer, 45.8% of young adult survivors were accompanied to their first survivorship clinic visits by a parent. We found that parental accompaniment was not associated with the medical complexity of the patient, as indicated by the number and severity of medical late effects, neurocognitive impairment, and/or emotional distress. Younger age at first survivorship clinic visit was significantly associated with parental accompaniment in both the 18.0–24.99 and ≥ 25.0-year age ranges. Furthermore, accompaniment was not associated with adherence to recommended surveillance tests or follow-up survivorship clinic visits.

The frequency of parental accompaniment in this study falls within the range of previously reported frequencies of 38 to 66% in adult survivors of childhood cancer [21, 32]. Other investigators have found that younger age is associated with greater likelihood of accompaniment and parental involvement among young adult survivors. For example, Kinahan et al. showed that among 42 adult childhood cancer survivor-parent dyads, 50% of parents remained involved in their adult survivor’s care as evidenced by accompanying their survivor to survivorship clinic, managing their healthcare, or expressing concerns about their health [21]. The adult survivors with involved parents were younger than those whose parents were not as involved in their care.

Our study showed that young adult survivors of childhood CNS tumors were more likely to be accompanied by a parent. Survivors of CNS tumors were excluded in other studies looking at parental accompaniment [12, 21, 32]. Increased rates of neurocognitive impairment and emotional distress have been found among CNS tumor survivors, which is related to reduced independence [22, 37]. Thus, increased rates of parental accompaniment within this subgroup were anticipated. Although the phenomenon was observed in this subgroup, we cannot conclude that it was due to neurocognitive and emotional issues, as these late effects were not associated with parental accompaniment. This finding suggests there are other factors that drive parental accompaniment in this subgroup.

Compared with previous studies which examined parent factors or perceptions of the survivor’s health, this study investigated associations between objective measures of the survivor’s health and accompaniment. We found that the survivor’s current health status was not associated with parental accompaniment. Staba Hogan et al. documented that treatment severity and number of medical late effects were not associated with parents perceiving their survivor as vulnerable, a concept possibly related to parental accompaniment and involvement [36]. These studies suggest there are factors unrelated to the current health of the survivors that contribute to these phenomena.

Parental accompaniment was not associated with adherence to recommended surveillance or to follow-up survivorship clinic visits. This finding contrasts the robust association between social support (e.g., practical help, emotional support, and family cohesiveness) and adherence to medical recommendations across pediatric and adult populations in the literature [11]. Among adolescents, those with more open family relationships and support are more likely to comply with medical recommendations [23]. Moreover, in adolescent and young adults (AYAs) with cancer, a lack of psychosocial supports is a risk factor for non-adherence with follow-up care [5, 35]. We did not measure the quality of the parent-child relationship or assess the reasons for accompaniment. Less cohesiveness and openness, as well as family conflict, reduces adherence to recommendations among AYAs with cancer as well as with other chronic illness [5, 11, 23]. Additionally, given the unexpected, statistically unusual, and life-threatening diagnosis of cancer, this may be a distinct chronic illness population to which data from other populations cannot be extrapolated. For example, although distress diminishes over time among parents whose children have been diagnosed with diabetes, feelings of uncertainty and fear remain at high levels for parents of children diagnosed with cancer [4]. Parents of childhood cancer survivors also worry about recurrence [30], which may explain why parents are accompanying their adult childhood cancer survivors at greater rates, and why accompaniment is not associated with survivors’ adherence to medical recommendations.

We did not collect data to investigate parent factors associated with accompaniment, but conjecture that the emotional burden on parents of young adult survivors of childhood cancer may impact the transition to survivorship care. Ongoing engagement in the young adult survivor’s care may be due to concern or a way to provide practical support [12, 21, 32]. Parents may also play a role in ensuring that young adult survivors do not become lost to follow-up. Young adult survivors may lack the maturity to transition successfully to survivorship care without their parents [25]. Additionally, young adult survivors may become lost to follow-up due to post-traumatic stress symptoms related to their cancer diagnosis and treatment [14, 33]. Family-focused interventions to reduce anxiety and stress may be an important component in addressing the needs of young adult survivors and their parents [20]. Finally, the childhood cancer population is unique from other chronic childhood disease populations such as cystic fibrosis or juvenile-onset diabetes, as young adult cancer survivors ready to transition to survivorship care may be asymptomatic from a health standpoint, leading them to feel that they have no healthcare needs [25] and unaware of the potential to develop late effects [29].

Study limitations

Data were collected from one clinic, reducing generalizability of the findings. However, this clinic operates within a regional comprehensive cancer center and can be considered a representative sample. Additionally, selection bias may exist. Despite recommendations to all survivors to attend a survivorship clinic, a small number follow through [40]. Next, we examined parent accompaniment because they represent the vast majority of companions; however, a small subset of patients was accompanied by other family members and/or friends.

Clinical implications

Further studies are needed to better elucidate factors related to parental accompaniment by describing patients who do not attend survivorship clinic, exploring reasons other young adult survivors come to clinic independently, or focusing on CNS tumor survivors, who were more to be accompanied by a parent. However, given the frequency of ongoing parental involvement with clinical care, any interventions to improve adherence to survivorship care in young adults should take parental involvement into consideration.

Conclusion

In this large study of young adult survivors of childhood cancer, almost half were accompanied to their first survivorship clinic visit by a parent. Younger individuals, as well as those with a history of a CNS tumor, were more likely to be accompanied by a parent. Interestingly, accompaniment was not associated with the complexity of survivors’ health status or adherence to recommended surveillance tests and survivorship clinic follow-up.

Data availability

We have full control of our data and will share it with the journal upon request.