Health Competence Beliefs and Health-Related Quality of Life Among Adolescent and Young Adult Survivors of Childhood Cancer and Healthy Peers

Abstract

Purpose:

Adolescent and young adult (AYA) survivors of childhood cancer are at risk for late-effects that can impact how one perceives their health and well-being. Understanding beliefs about health competence and well-being among survivors can help identify support needs and increase adherence to long-term follow-up guidelines. This study examined differences in health competence beliefs and health-related quality of life (HRQOL) between AYA survivors of childhood cancer and matched healthy peers. In addition, the relationship between health competence beliefs and HRQOL, as well as the moderating effect of cancer survivorship, was investigated.

Methods:

Survivors (n = 49) and healthy peers (n = 54) completed measures about health competence beliefs (i.e., Health Perception, Cognitive Competence, Autonomy, and School/Work Functioning) and HRQOL. Multiple group analysis was used to investigate differences in health competence beliefs and HRQOL between survivors and peers. Multivariate multiple regression analyses were used to investigate the relationships between health competence beliefs and HRQOL. Finally, a history of cancer was examined as a possible moderator using additional multivariate multiple regression analyses.

Results:

Survivors reported significantly lower Health Perception, Cognitive Competence, Autonomy, and School/Work Functioning scores compared to healthy peers. Among both groups, Health Perception and Cognitive Competence scores were associated with multiple domains of HRQOL. These relationships were not moderated by having a history of cancer.

Conclusions:

Perceptions about one's health and cognitive abilities may impact HRQOL among AYA survivors of childhood cancer and health peers. Identifying those at risk for poor well-being may help to guide interventions aimed at increasing adherence to medical recommendations.

There are ∼419,000 childhood cancer survivors currently living in the United States.¹ The number of adolescent and young adult (AYA) survivors of childhood cancer is only expected to increase due to the continuing advances in treatment coupled with increased incidence rates of childhood cancers.^2,3 For AYA survivors, beliefs about one's health and well-being may be impacted by their experience with cancer and its long-term effects. Furthermore, increases in distress can occur during the transition from treatment to survivorship among AYA cancer patients,⁴ making it important to understand emotional, social, and physical functioning after treatment has concluded.

While definitions of health-related quality of life (HRQOL) vary, the main tenets encompass self-perceived well-being in multiple dimensions related to a major illness.^5,6 Overall findings suggest that AYA survivors have comparable HRQOL ratings to their peers without a history of cancer in most domains, including psychosocial, social, and school/work functioning.^7–9 However, a substantial subset of these survivors reports lower physical HRQOL ratings compared to their healthy peers.^8–10

In fact, more than half of childhood cancer survivors report at least one chronic medical condition and more than a third report two or more conditions.^11,12 AYA survivors are also more likely to report adverse physical health (e.g., major joint replacement, cerebrovascular accident), activity limitation (e.g., limitations in the kinds or amount of moderate activities), functional impairment (e.g., requiring help with personal care needs), chronic health conditions (e.g., congestive heart failure, coronary artery disease), severe or life-threatening conditions (e.g., renal failure, legal blindness), and higher hospitalization rates compared to those without a history of cancer.^11,13,14

The potential for long-term physical adverse effects of cancer treatment is an important factor to consider, given recommendations for survivors of childhood cancer to participate in long-term follow-up care focused on the surveillance, education, and management of such late effects.¹⁵ This may be especially difficult for AYA survivors as they transition from pediatric to adult health care settings where they are expected to take a more active role in the management of this long-term follow-up care.¹⁶ Indeed, few childhood cancer survivors report consistent engagement in such long-term cancer-focused follow-up care.¹⁷ It is thus important to look at individual factors that may impact adherence during a phase of life marked by multiple external transitions (e.g., relocation, marriage, changes in insurance coverage), which can make maintaining care difficult.

Studies have shown relationships between HRQOL ratings and adherence to treatment recommendations among AYA cancer survivors.^18,19 In addition, beliefs about one's health has been identified as one individual and modifiable factor that can impact adherence in chronic illness populations, such as childhood cancer survivors.^20,21 While there are limited data on the psychological factors associated specifically with engagement in survivorship recommendations for survivors of childhood cancer, there is some evidence to suggest that personal beliefs about one's health may be more impactful than objective health measures.²²

One specific health belief that may be of particular importance for understanding this relationship is perceived health competence. Distinct from HRQOL, perceived health competence encompasses an individual's sense of their ability to effectively manage their health outcomes,²³ in addition to their overall perception of health and well-being.²⁴ In AYA populations, perceived health competence can include one's beliefs about their ability to navigate heath systems on their own, satisfaction with these health systems, vulnerabilities for future health problems, and functioning compared to others their age.²⁴

When compared to healthy controls, childhood and adult cancer survivors report poorer perceptions about their physical health^24–27 and lower perceived competence in their cognitive abilities.^24,27 AYA survivors have also reported less competent beliefs in their ability to manage their health on their own (i.e., a sense of autonomy) compared to healthy controls.²⁷ Another study found that survivors of Central Nervous System tumors reported fewer autonomous activities (e.g., leaving home) compared to controls.²⁸ Identifying health beliefs that may be negatively impacted by the experience of childhood cancer can help to identify possible areas for intervention in an effort to increase adherence to long-term follow-up guidelines.

In addition to their role in adherence to long-term follow-up guidelines for AYA survivors, beliefs about one's health status and functioning may also impact perceptions of well-being in this population. Previous research has shown that AYA cancer survivors' beliefs about the intensity of treatment and the extent to which their lives were threatened were related to levels of distress.²⁹ In addition, findings show that a higher perceived risk of cancer recurrence³⁰ is associated with lower quality of life ratings among adult cancer survivors. Given the strong relationship between perceived health status, competency in managing their own health, and perceptions of well-being, it is important to investigate the relationships between perceived health competence and HRQOL.

While previous studies have investigated the relationships between health competency beliefs and psychosocial outcomes, they have focused primarily on the differences in these concepts between survivors and healthy peers²⁷ or on one specific psychosocial outcome, such as post-traumatic stress symptoms,²⁹ which may not be applicable to all survivors. Identifying how competency beliefs are associated with more global perceptions of well-being, such as HRQOL, in the AYA population can help to better identify support needs, those at risk for poor psychosocial outcomes, and additional points of intervention in this age range. Furthermore, as the experience of childhood cancer may negatively impact one's perceptions about their health competency, it is important to understand whether this experience alters the relationship between perceived health competence and HRQOL.

This study aimed to investigate the differences in perceived health competence and HRQOL between AYA survivors and healthy peers. In addition, this study also aimed to investigate the relationship between perceived health competence and HRQOL in both groups, as well as if the experience of childhood cancer alters these relationships. Specifically, we hypothesized that AYA survivors would report lower health competence beliefs and lower physical HRQOL compared to healthy peers. In addition, we hypothesize that higher health competence beliefs will be associated with higher HRQOL ratings. Finally, we hypothesize that group affiliation (i.e., cancer survivor versus healthy peer) will significantly moderate the relationship between health competence beliefs and HRQOL.

Methods

Participants

Data were collected from baseline measures of 49 pediatric cancer survivors and 54 healthy peers from a longitudinal study investigating factors related to nonadherence to the long-term follow-up guidelines among survivors of childhood cancer and possible differences in engagement in routine preventive care between survivors and healthy peers. Survivors were primarily male (57%) and white (94%), and had a mean age of 24.20 years (SD = 7.89; range = 13.65–41.86) at the time of study consent. The majority were diagnosed with leukemia/lymphoma (59%) and 71% had completed chemotherapy. Healthy peers were primarily male (56%) and white (93%), and had a mean age of 23.90 (SD = 7.77; range = 13.18–38.74) at consent. There was no significant difference in demographics between the two groups. See Table 1 for participant demographics.

Table 1.

Demographics

	Survivors (n = 49)	Health peers (n = 54)
	Frequency (%)	Frequency (%)
Mean age at consent, years (SD)	24.20 (SD = 7.89)	23.89 (SD = 7.77)
Male sex	28 (57)	30 (56)
Ethnicity/race
Black/African American	2 (4)	3 (6)
White	46 (94)	50 (93)
Hispanic	1 (2)	1 (2)
Missing/prefer not to answer
Highest grade completed
<High school graduate	1 (2)	17 (2)
High school graduate or GED	9 (18)	12 (22)
Some college	12 (25)	12 (22)
College graduate	6 (12)	11 (20)
Graduate or professional degree	8 (16)	2 (4)
Missing/prefer not to answer	13 (27)
Household income
<$9,999–$49,999	11 (31)	12 (22)
$50,000–$79,999	8 (16)	7 (14)
>$80,000	17 (34)	29 (54)
Unknown	13 (27)	6 (11)
Diagnosis
Leukemia/Lymphoma	29 (59)
Neuro-oncology	1 (2)
Solid tumor	6 (12)
Missing/prefer not to answer	13 (27)
Time off treatment, years (SD)	14.61 (SD = 6.38)
Type of treatment received
Chemotherapy	35 (71)
Radiation	14 (29)
BMT	7 (14)
Resection	4 (8)
Number of treatments received
1	16 (33)
2	16 (33)
3	4 (8)
Missing/prefer not to answer	13 (27)
Examples self-reported chronic health problems believed to be from cancer/cancer treatment (note: free response answers; could report multiple conditions)
Syringomyelia
Nerve damage
Speech difficulties
Memory difficulties
Back condition
Hearing loss
Liver condition
Thyroid condition
Mouth sores
Arthritis
Cardiovascular condition
Fertility problem
Urinary problems
Hair loss
Bone deficit

Procedures

The study was conducted from 2012 to 2015 at a Midwestern children's hospital and approved by the hospital's Institutional Review Board. Eligible survivors were approached at their annual long-term follow-up appointment to participate in a questionnaire-based study. Healthy peers were recruited through primary care patient registries and mass employee email at the institution. Study inclusion criteria for survivors included the following: (1) being diagnosed and treated for cancer before age 19, (2) being off-treatment, and (3) being able to speak fluent English. Study inclusion criteria for healthy peers included the following: (1) being 12 years of age or older, (2) being free from any chronic medical condition and/or history of cancer, and (3) being able to speak fluent English.

Any potential participant who evidenced significant cognitive deficits that would interfere with their ability to comprehend the questionnaires was ineligible for this study. Of the 80 eligible survivors approached, 61 (76%) consented to study and 49 (61%) had evaluable data. Reasons for declining participation included not being interested (20%) and not returning consent forms (30%). Once consented, participants were given a unique identification to log-in to an online web portal and complete questionnaires. After survivors completed baseline measures, they were matched to a healthy peer using age, race/ethnicity, and gender. Upon completion of questionnaires, participants were compensated $20.

Measures

Demographics

Demographic variables (e.g., gender, age at consent, race, household income) were assessed by self-report as part of the online questionnaire battery. In addition, medical history (e.g., cancer diagnosis, treatment) was assessed by retrospective chart review.

Health competence beliefs inventory

The Health Competence Beliefs Inventory (HCBI)²⁴ is a 21-item four-point Likert scale measure (“Strongly Disagree” to “Strongly Agree”) of competence about self-management and well-being. This measure yields four subscales: Health Perceptions (e.g., I'm not as healthy as other people my age), Cognitive Competence (e.g., I learn new things as easily as other people), Autonomy (e.g., I can schedule a medical appointment on my own), and Satisfaction with Health care (e.g., my doctors understand my medical history). Appropriate items are reverse-scored and responses are summed to derive a total score for each subscale, with higher scores indicating more perceived competency (score range 21–84). This scale has shown good reliability in a previous validation study (α = 0.75–0.87),²⁷ as well as in this study (α = 0.71–0.81).

Pediatric quality of life inventory young adult version

The Pediatric Quality of Life Inventory (PedsQL)³¹ is a 23-item self-report measure of HRQOL. This measure yields four subscales with good reliability: Physical Functioning (e.g., it is hard for me to walk more than one block), Emotional Functioning (e.g., I feel afraid or scared), Social Functioning (e.g., I have trouble getting along with other young adults), and School/Work Functioning (e.g., it is hard to pay attention at work or school).

In addition, the PedsQL yields a Total Score (sum of all subscales), a Psychosocial Health Summary Score (sum of the Emotional, Social, and School/Work functioning subscales), and a Physical Health Summary Score (same as the Physical Functioning subscale). Items are reverse scored and transformed so that higher scores indicate better HRQOL, and scale scores are calculated as the mean score of items in each subscale. This scale has shown good reliability in a previous validation study (α = 0.71–0.78),³¹ as well as in this study (α = 0.80–0.91).

Data analysis

Descriptive statistics (Table 1) were calculated for demographic and basic measure characteristics. Preliminary analyses were conducted using SPSS v. 29. Among the demographic variables, gender (PedsQL Physical Functioning t(86.42) = −3.34, p = 0.04) and age (PedsQL School/Work Functioning r = 0.26, p = 0.01) were associated with PedsQL subscale scores, and thus were included in the models as covariates. Additional preliminary analyses showed that the HCBI and PedsQL subscales were correlated from 0.30 to 0.57 and 0.20 to 0.83, respectively, indicating that a MANOVA should be used to test for group differences. In lieu of an omnibus MANOVA test, all possible a priori comparisons (2 groups * 10 response variables) were conducted using the multiple group function in MPlus v. 8.1. In addition, a multivariate multiple regression analysis was used to investigate the relationship between HCBI subscales and PedsQL scores for the entire sample.

Due to collinearity between PedsQL scores, only PedsQL subscales (i.e., Physical Functioning, Emotional Functioning, Social Functioning, School/Work Functioning) were used as outcome variables. Specifically, outcome variables (PedsQL subscales) were regressed on the predictor variables (HCBI subscales) within one model to allow the outcome variables to covary. Finally, group affiliation (i.e., childhood cancer survivors and healthy peers) was tested as a possible moderator in the relationship between HCBI and PedsQL subscale scores using a second multivariate multiple regression model similar to the previous analysis. In this model, variables were centered before the analysis and interactions terms (e.g., HCBI subscale*group affiliation) were included as predictor variables to test for moderation.

Results

Differences between survivors and peers

The multiple group analysis showed significant differences between survivors and peers in 3 of the 10 comparisons when controlling for gender and age. Specifically, AYA survivors of childhood cancer reported significantly lower HCBI Health Perceptions (p < 0.001), Cognitive Competence (p < 0.001), and Autonomy (p = 0.039) scores than healthy peers. In addition, survivors reported significantly lower PedsQL School/Work Functioning compared to healthy peers (p = 0.026). See Table 2 for subscale means and group comparison results.

Table 2.

Differences in Health Competence Beliefs Inventory and Pediatric Quality-of-Life Inventory Scores Between Childhood Cancer Survivors and Healthy Peers

Mean(SD)
	Survivors (n = 49)	Peers (n = 54)	Estimate (mean difference)^*	SE^*	p ^*
HCBI health perceptions	16.82 (4.09)	19.74 (3.32)	−2.92	0.73	<0.001
HCBI cognitive competence	14.73 (3.08)	16.81 (2.71)	−2.08	0.57	<0.001
HCBI autonomy	14.37 (3.77)	15.89 (3.71)	−1.52	0.74	0.039
HCBI satisfaction with health care	16.96 (2.94)	16.81 (1.91)	0.14	0.50	0.771
PedsQL physical functioning subscale/physical health summary	82.65 (17.16)	86.05 (2.12)	−3.401	3.21	0.289
PedsQL emotional functioning subscale	77.45 (19.50)	79.63 (18.19)	−2.19	3.67	0.552
PedsQL social functioning subscale	83.27 (16.69)	89.17 (14.43)	−5.90	2.97	0.047
PedsQL school/work functioning subscale	74.80 (17.23)	81.67 (14.27)	−6.87	3.09	0.026
PedsQL psychosocial summary	78.50 (14.18)	83.49 (12.80)	−4.99	2.59	0.054
PedsQL total summary	79.95 (13.47)	84.38 (12.29)	−4.34	2.49	0.075

Includes gender and age as covariates.

HCBI, health competence beliefs inventory; PedsQL, pediatric quality of life inventory.

Relationship between HCBI and PedsQL scores

When controlling for gender and age, HCBI Health Perception scores were significantly associated with all PedsQL subscale scores (e.g., Physical [p < 0.001], Emotional [p = 0.003], Social [p < 0.001], and School/Work Functioning [p = 0.007]). In addition, HCBI Cognitive Competence scores were significantly associated with the School/Work (p < 0.001) Functioning subscale score. See Table 3 for the model results. After p-values were re-calculated based on a z distribution and applying False Discovery Rate correction, the significant comparisons remained significant.

Table 3.

Multivariate Multiple Regression Model Results

Outcome variable	Estimate	SE	p
PedsQL physical functioning subscale
HCBI health perceptions	1.55	0.44	<0.001
HCBI cognitive competence	1.01	0.55	0.067
HCBI autonomy	−0.04	0.58	0.944
HCBI satisfaction with health care	−0.10	0.64	0.881
Gender	7.30	2.84	0.010
Age	0.03	0.30	0.922
PedsQL emotional functioning subscale
HCBI health perceptions	1.74	0.58	0.003
HCBI cognitive competence	0.81	0.71	0.252
HCBI autonomy	−0.32	0.69	0.643
HCBI satisfaction with health care	−0.30	0.83	0.721
Gender	4.05	3.52	0.250
Age	0.37	0.31	0.231
PedsQL social functioning subscale
HCBI health perceptions	1.59	0.44	<0.001
HCBI cognitive competence	0.79	0.53	0.137
HCBI autonomy	0.89	0.59	0.128
HCBI satisfaction with health care	0.75	0.54	0.166
Gender	−2.40	2.61	0.359
Age	−0.02	0.25	0.932
PedsQL school/work functioning subscale
HCBI health perceptions	0.92	0.34	0.007
HCBI cognitive competence	2.47	0.58	<0.001
HCBI autonomy	0.12	0.53	0.817
HCBI satisfaction with health care	0.11	0.71	0.873
Gender	−1.48	2.64	0.576
Age	0.45	0.22	0.041

Moderation analysis

The moderation analysis showed that group affiliation was not a significant moderator in any of the relationships between HCBI and PedsQL scores, suggesting that these relationships did not vary between childhood cancer survivors and healthy peers. See Table 4 for the moderation model results.

Table 4.

Moderation Analysis Results

Outcome variable	Estimate	SE	p
PedsQL physical functioning subscale
HCBI health perceptions	1.04	0.57	0.067
HCBI cognitive competence	1.87	0.66	0.005
HCBI autonomy	−0.33	0.63	0.594
HCBI satisfaction with health care	0.76	1.36	0.579
HCBI health perceptions^*group	0.64	0.91	0.481
HCBI cognitive competence^*group	−1.51	0.99	0.128
HCBI autonomy^*group	0.60	0.73	0.410
HCBI satisfaction with health care^*group	−1.38	1.50	0.359
Gender	7.32	2.71	0.007
Age	−0.02	0.30	0.936
PedsQL emotional functioning subscale
HCBI health perceptions	2.03	0.87	0.019
HCBI cognitive competence	−0.67	1.05	0.523
HCBI autonomy	0.43	0.71	0.551
HCBI satisfaction with health care	−0.09	1.46	0.951
HCBI health perceptions^*group	−0.34	1.16	0.767
HCBI cognitive competence^*group	2.34	1.44	0.105
HCBI autonomy^*group	−1.33	1.03	0.195
HCBI satisfaction with health care^*group	0.10	1.89	0.957
Gender	4.67	3.41	0.171
Age	0.42	0.31	0.185
PedsQL social functioning subscale
HCBI health perceptions	1.37	0.60	0.022
HCBI cognitive competence	0.26	0.95	0.784
HCBI autonomy	0.19	0.71	0.787
HCBI satisfaction with health care	1.19	0.99	0.231
HCBI health perceptions^*group	0.33	0.88	0.708
HCBI cognitive competence^*group	1.24	1.19	0.297
HCBI autonomy^*group	1.52	0.82	0.062
HCBI satisfaction with health care^*group	−0.43	1.24	0.731
Gender	−3.28	2.51	0.190
Age	−0.03	0.26	0.915
PedsQL school/work functioning subscale
HCBI health perceptions	0.88	0.66	0.183
HCBI cognitive competence	1.61	0.97	0.097
HCBI autonomy	0.40	0.70	0.562
HCBI satisfaction with health care	1.36	0.80	0.088
HCBI health perceptions^*group	−0.06	0.87	0.948
HCBI cognitive competence^*group	1.25	1.26	0.319
HCBI autonomy^*group	−0.30	0.77	0.702
HCBI satisfaction with health care^*group	−1.62	1.30	0.215
Gender	−0.92	2.72	0.736
Age	0.43	0.23	0.055

Discussion

Cancer diagnoses and treatment can impact the beliefs survivors have about their health status, cognitive abilities, and competence to care for themselves, especially among those who are diagnosed as children or adolescents. Consistent with other studies investigating differences in health-related competence between AYA survivors of childhood cancer and healthy peers,^24,27 survivors in this study reported lower perceived health and autonomy compared to healthy peers.

These findings suggest that the experience of a previous cancer diagnosis, long-term physical effects of treatment, and perceived vulnerability to future illnesses negatively impact a survivor's perception of their health and competency to self-manage their care. While data were not available for this study to definitively indicate whether these perceptions reflect actual differences in health status between the two groups, self-reported health status has been shown to predict morbidity and mortality^32,33 among adults, making subjective perceptions about health status an appropriate and significant assessment of health in some patient populations.

In addition, the lower Cognitive Competence scores among survivors are consistent with the known late effects of cancer treatment on cognitive functioning in some childhood cancer survivors.^8,34 As more neurocognitive impairment following childhood cancer treatment is associated with lower educational attainment and household income,³⁵ this is an especially important factor to consider for survivors who are beginning their transition into adulthood. Furthermore, perceptions about health and cognitive functioning can impact self-management of chronic pediatric conditions,²¹ suggesting that they may be vital targets of assessment and intervention for survivors to increase adherence to long-term follow-up guidelines for childhood cancer.

Furthermore, a previous cancer diagnosis and the management of late-term effects among AYA survivors may necessitate a reliance on parents for health care needs.^36,37 Indeed, previous research has shown that a high percentage of adult survivors of childhood cancer attend survivorship clinic appointments with their parents.³⁸ While adolescence and young adulthood is often marked by increasing levels of independence and autonomy,³⁹ our findings suggest that AYA survivors may feel less able to care for themselves and their health care needs without aid from others, as much as their healthy peers.

The lack of differences between survivors and peers regarding the Satisfaction with Health care subscale was inconsistent with the previous studies that found higher satisfaction scores among cancer survivors.^24,27 The health care satisfaction domain questions assess feelings related to the participant's involvement with health care providers. While it may be assumed that the survivors in this study had higher rates of health care utilization at the time of study completion, these data were not available. Given the extended amount of time since treatment on average (13.51 years), it is possible that both survivors and healthy peers had limited recent exposure to health care providers, making it difficult to detect differences in a domain that heavily relies on health care utilization.

The findings of this study are consistent with previous research showing that despite experiencing a life-threatening illness and potentially intensive treatment, survivors do not report lower overall or psychosocial HRQOL ratings than healthy peers.^8–10 Contrary to our hypothesis, survivors did not report lower physical HRQOL ratings that healthy peers. This may be due, in part, to our sample having low numbers of bone and neurological tumors, subsets of patients who traditionally report lower HRQOL ratings among AYA survivors.¹³

The differences between the groups in terms of School/Work Functioning is consistent with previous research suggesting that some young adult survivors of childhood cancer report difficulties with educational attainment and employment.^40–42 The lower School/Work Functioning scores may be particularly important as longitudinal research suggests that the lack of involvement in school or work contributes to distress in AYA cancer survivors.⁴ In addition, the School/Work Functioning subscale assesses difficulties with attention/memory and missing school or work due to illness or medical appointments.³¹

Given the impact that cancer treatments can have on cognitive functioning,^8,34 it is possible this may effect a survivor's ability to concentrate and remember tasks at school or work and is consistent with the lower Cognitive Competence scores among survivors in this study. Furthermore, the long-term physical side effects of cancer treatment and associated medical appointments may interfere with a survivor's school or work attendance and make it difficult to maintain school and/or work obligations.

Among both AYA survivors and healthy peers, HCBI Health Perceptions and Cognitive Competence scores were related to PedsQL subscales. Most notably, HCBI Health Perception scores were associated with all four PedsQL subscales, pointing to the critical role that beliefs about one's overall perceived health competency may play in the assessment of multiple areas of well-being. The Health Perceptions and Cognitive Competence domains are based on the participant's perception of their own functioning and may be more applicable to HRQOL than a participant's satisfaction with health care. This finding is particularly interesting, given that survivors and peers differed in these domains, and thus may be of particular importance when assessing well-being among survivors of childhood cancer. Furthermore, these domains may be appropriate targets for psychological interventions, such as acceptance and/or cognitive restructuring, addressing cognitive errors around current functioning to increase HRQOL.

Contrary to our hypothesis, group affiliation (i.e., survivor versus peer) did not significantly moderate the relationship between HCBI and PedsQL subscales. This suggests that the relationship between health competence beliefs and HRQOL did not differ between those who have a history of childhood cancer and those who did not. Despite the lack of significant moderation, our findings suggest that perceptions about one's health and cognitive abilities are related to multiple domains of HRQOL in both survivors and healthy peers, making them important areas to assess in any AYA population. Furthermore, these domains may be especially important to consider in AYA survivors of childhood cancer, given the differences between groups observed in this study.

There are study limitations that should be considered when interpreting these findings. The data from this study were collected from one institution and one time point and may not generalize to other patient populations. The study sample was racially and ethnically homogeneous, with the majority of participants self-identifying as white. While this is consistent with national childhood cancer incidence rates,⁴³ results from this study may not adequately represent the minority survivor experience. In addition, participants in this study were limited to those with access to long-term survivorship care at a nationally recognized medical institution.

Given the well-documented effects of systemic racism on access to quality health care,⁴⁴ this significantly limited access to underrepresented patient populations. Future studies investigating HRQOL among AYA survivors would benefit from exploring race and ethnicity differences with larger samples, making specific efforts to recruit a more diverse sample, and utilizing research/recruitment methods more appropriate for underrepresented populations,⁴⁵ as race/ethnicity has been found to be related to psychological and physical quality of life in childhood cancer^7,46–49 and adult breast cancer survivors.^50,51 Furthermore, future efforts should be made to use questionnaires that are available in multiple languages so that the findings are not limited to those who are fluent in English.

The age range of this study extended beyond the typical AYA age range (15–39), which may limit the ability to compare with other studies. However, this study included healthy peers, and thus the youngest age range was extended to better comply with the WHO definition of adolescence.⁵² In addition, one participant was 40 years old, but they were 39 at the time of recruitment and thus was included in the study. A strength of this study is the use of a nonsibling comparison group. While many previous studies used siblings as the comparison group, the utilization of nonsibling matched healthy controls in this study enabled the groups to be considered truly independent observations.

Overall, this study found that survivors had less competent perceptions of health, cognitive abilities, and autonomy compared to healthy peers. In addition, health perceptions and cognitive competence beliefs were positively associated with multiple HRQOL domains in both AYA survivors of childhood cancer and healthy peers. Identifying health competence belief domains that are associated with poor HRQOL ratings can help to identify those at risk for poor psychosocial outcomes as well as possible points of intervention.

Footnotes

Acknowledgment

This study was approved by our institution's Internal Review Board and adheres to the principles outlined in the Declaration of Helsinki.

Authors' Contribution

L.B.: conceptualization (lead); writing – original draft (lead); formal analysis (equal); writing – review and editing (equal); and methodology (lead); J.P.: formal analysis (equal) and writing – original draft (supporting); A.P.: conceptualization (supporting); writing – review and editing (equal); and funding acquisition (lead).

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This study was supported by internal funding by the Cancer and Blood Diseases Institute at Cincinnati Children's Hospital.

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