Patterns in Clinical Trial Enrollment and Supportive Care Services Provision Among Adolescents and Young Adults Diagnosed with Having Cancer During the Period 2000

Abstract

Purpose:

Support services provision and clinical trial enrollment were examined for a cohort of adolescent and young adults (AYAs) diagnosed with having cancer and treated at adult hospitals in Western Australia (WA).

Methods:

The sample was 383 AYAs aged 15–24 years diagnosed from 2000 to 2004, with follow-up until 2007. Sociodemographic, clinical trial participation, and health service data were obtained from Statewide administrative health data collections and patient medical records at hospitals in WA. Separate multivariate logistic regression models were used to identify which sociodemographic and treatment setting variables predicted whether a patient had formal contact with a mental health professional, social worker, or occupational therapist. Due to the small number of clinical trial enrollments in the sample (n = 5), modeling was not used to explore group differences in this outcome.

Results:

Mental health professional, social worker, and occupational therapist consultations were received only by patients who attended a metropolitan hospital. Compared with patients treated at only tertiary centers, those treated at only nontertiary centers had lower odds of consulting with a mental health professional (OR = 0.12, 95% CI 0.03, 0.58) or occupational therapist (OR = 0.02, 95% CI 0.001, 0.23). Less than 2% of the cohort enrolled in a clinical trial.

Conclusion:

Access to clinical trials and support services by AYAs diagnosed with having cancer in WA was generally low, particularly outside the metropolitan area. Variations in accessibility across different treatment settings in WA warrant efforts for greater awareness of AYA needs and increased communication and collaboration between specialists and centers involved in the care of AYAs with cancer.

Introduction

Compared with younger (pediatric) and older age groups, adolescent and young adults (AYAs) have experienced smaller improvements in cancer survival over the past few decades.^1–3 Limited access to clinical trials and age-appropriate medical and psychosocial services have been identified as significant contributors to this survival improvement gap.^1,4–6

Clinical trial participation has been associated with improved survival outcomes for some cancer types.^1,7 However, the proportion of patients who enroll in cancer-related clinical trials is considerably lower for AYAs than for other age groups,^1,4,8–10 with less than 10% of AYAs compared with 40% of patients under 15 years enrolling in one Australian study.¹¹ This discrepancy is attributed to a number of factors, including the lack of clinical trials available to AYAs, and the low proportion of AYAs treated in tertiary pediatric institutions (due to age-related admission cutoffs), where clinical trial enrollment appears to be superior for this group.^1,8,10,11 One Australian study found that the clinical trial recruitment fraction for AYA cancer patients treated in pediatric teaching hospitals was 38% compared with 3% for those treated in adult hospitals.¹¹

The availability of appropriate support services for AYAs diagnosed with having cancer also varies across treatment settings. Due to the physical, developmental, and psychosocial changes faced during this stage of life, AYAs have unique requirements,^4,12,13 which may not be adequately addressed by services available at either pediatric or adult centers.^14–17 While Australian studies indicate that patients treated in tertiary pediatric hospitals are most likely to enroll in a clinical trial, be treated by multidisciplinary teams, and access occupational therapy and social work services,^11,18 most AYAs diagnosed with having cancer are treated in adult facilities, where some AYAs report feelings of isolation and unmet information and support needs.^18–21

In response to the poorer outcomes and lack of specialized care for AYAs diagnosed with having cancer, a number of AYA-specific initiatives have been developed worldwide.²² Best practice frameworks recommend that AYA cancer patients must receive multidisciplinary age-appropriate care and enroll in clinical trials where possible.^16,23,24 More recently, changes to AYA cancer care practices have occurred in Australia, with the implementation of five dedicated Youth Cancer Services (YCS) targeting 15–25-year-olds across the country, including in Western Australia (WA).²⁵

While these initiatives are a step forward for AYA cancer care, there is no empirical evidence on patterns in clinical trial enrollment and access to support services among AYAs diagnosed with having cancer in WA. Such data are required to identify strengths and weaknesses in service delivery and to inform the development and evaluation of initiatives targeting AYA cancer outcomes.

The aim of this study was to investigate patterns in clinical trial enrollment and support services provision among AYAs diagnosed with having cancer in WA. In anticipation of planned developments to improve AYA cancer services, data were collected for patients diagnosed in WA over the 5-year period, 2000 to 2004, to identify deficits in services provision at the time and to provide baseline data for review of services provision in the future. The 15–24 years age group was chosen to reflect the similar age range used in Australian National Service Delivery Frameworks for AYA cancer care.^16,23 Given that most AYAs are aged over 17 years at diagnosis, and therefore ineligible to attend the single pediatric hospital in WA due to imposed age cutoffs, the study focused on patients treated in adult facilities.

Methods

A retrospective descriptive study of routinely collected administrative health data and patient medical records was undertaken to evaluate patterns in the provision of specific services to AYAs who were diagnosed with having cancer in WA from 2000 to 2004 and treated in adult hospitals. Details were collected for clinical trial enrollments that took place between January 2000 and March 2007 and for treatment settings and support services received between January 2000 and November 2007, following the patient's primary cancer diagnosis. Ethics approval to undertake this study was received by the Human Research Ethics Committees at Princess Margaret Hospital (Ref EC06-07), 12 additional WA hospitals or hospital groups covering all other sites for data collection, and the WA Health Department (Ref 200639).

Study population

The study population was all 15–24-year-olds with a case of a histologically confirmed, first-time invasive cancer (not a benign or in situ tumor) recorded in the WA Cancer Registry (WACR), who were (1) diagnosed in WA between January 1, 2000, and December 31, 2004, (2) permanently resident in WA at the time of diagnosis, and (3) treated in adult facilities in WA during the study period. It is a statutory requirement that all in situ neoplasia, nonmelanocytic skin cancers other than basal cell and squamous cell carcinomas, and a range of other neoplasms are reported to the WACR; consequently, the sample represented complete capture of the study population.

Data collection

Electronic administrative health data

Data were extracted through the WA Data Linkage System (WADLS), which links whole-of-population administrative health data within and across eight core datasets, including the WACR and the Hospital Morbidity Data Collection (HMDC).

Date of diagnosis, sex, birth date, and postcode at time of diagnosis were extracted for each patient from the WACR. Based on the residential postcode, patients were assigned a Remoteness Area (RA) as defined by the Australian Bureau of Statistics (ABS): Major Cities, Inner Regional, Outer Regional, Remote, and Very Remote.²⁶ Area-based socioeconomic status (SES) was also derived from postcodes using the Index of Relative Socioeconomic Disadvantage (IRSD) score.²⁶ To control for SES in logistic regression analyses, patients were categorized into SES quartiles based on the distribution of scores within the study cohort.^27,28 The WACR classifies the tumor site according to the relevant edition of the International Classification for Diseases for Oncology (ICD-O).²⁹

To control for cancer type in the regression analyses, tumor sites were collapsed into nine categories, as used by the Australian Institute for Health and Welfare (AIHW) in their recent report on AYA cancer: leukemia, lymphomas, central nervous system (CNS) cancers, bone cancers, soft tissue sarcomas, germ cell cancers, carcinomas (defined as cancers that develop in the epithelial cells covering the outside of the body or the body's organs, with thyroid, breast, cervical, and colorectal cancers commonly diagnosed in AYAs), and other or unspecified cancers (cancers that have a histology code, but are too uncommon to be included in one of the other eight cancer groups).³

The HMDC routinely captures all separations from all public and private hospitals (but not from private clinics or other nonhospital settings) within WA. Details of the location (metropolitan vs. nonmetropolitan), sector (public vs. private), and level (tertiary vs. nontertiary) of all hospitals attended by patients during the study period were obtained from the HMDC.

Clinical chart data

Patients' medical records from the hospitals they attended during the study period were examined to determine if a patient was enrolled in a clinical trial or consulted with a mental health professional (i.e., psychologist, psychiatrist, or counselor), social worker, or occupational therapist during the study period. Any additional (nonhospital) treatment locations were also identified from patients' hospital medical records. Data were extracted from patient records at all WA metropolitan hospitals and two rural hospitals by a single experienced oncology nurse using a pro forma developed specifically for the study. The pro forma was pilot-tested on 20 cases and some minor modifications were subsequently made before it was finalized. The nurse consulted with the study oncologist and/or the patients' clinicians to update incomplete or ambiguous information. For patient records held at all other remote centers, the treating doctor was asked to gather the required information from the record.

Hospital clinical trial managers within the hematology, medical oncology, and radiation oncology departments of each WA tertiary hospital provided information regarding clinical trial enrollments for AYA patients made in their department during the study period.

Statistical analyses

All analyses were performed using SPSS version 18. Descriptive statistics were calculated for each study variable overall and stratified by sociodemographic subgroups. Multivariate logistic regression was used to investigate which sociodemographic and treatment setting variables were predictive of a patient consulting with a mental health professional, social worker, or occupational therapist, with separate models for each outcome. Covariates in each model included age, sex, residential RA, SES, cancer type, and whether the patient received any treatment or services at a (1) tertiary setting, nontertiary setting, or both; (2) public setting, private setting, or both; and (3) metropolitan center, nonmetropolitan center, or both.

Due to the small number of clinical trial enrollments in the sample (n = 5), modeling was not used to explore differences in this outcome across subgroups.

Results

Sample

The WACR identified 419 cases aged 15–24 years with a histologically confirmed, primary invasive malignancy diagnosed in WA between January 1, 2000, and December 31, 2004. After reviewing medical records, 11 patients were considered to have a tumor that was benign, in situ, or not a primary diagnosis and excluded from the study. Twenty-five patients treated in pediatric hospitals were also excluded, leaving a final sample of 383 for this study.

The sample consisted of 206 males (53.8%) and 177 females (46.2%), with a mean age of 20.5 years (SD = 2.5). The cancers most commonly diagnosed were melanoma (n = 132, 34.5%), carcinomas (n = 72, 18.8%), lymphomas (n = 55, 14.4%), and germ cell tumors (n = 50, 13.1%) (Table 1).

Table 1.

Sociodemographic Characteristics of Adolescent and Young Adults Diagnosed with Having Cancer in Western Australia, 2000–2004

	n (%)
Age group (years)
15–19	137 (35.8)
20–24	246 (64.2)
Sex
Male	206 (53.8)
Female	177 (46.2)
Location
Metro	218 (56.9)
Rural/remote	165 (43.1)
SES quartile
First (most disadvantaged)	96 (25.1)
Second	97 (25.3)
Third	95 (24.8)
Fourth (least disadvantaged)	95 (24.8)
Cancer type
Carcinoma	72 (18.8)
Leukemia	31 (8.1)
Lymphomas	55 (14.4)
Central nervous system	21 (5.5)
Bone	7 (1.8)
Soft tissue carcinoma	13 (3.4)
Germ cell	50 (13.1)
Melanoma	132 (34.5)
Unknown	2 (0.5)
Total	383 (100)

SES, socioeconomic status.

Treatment settings and clinical trial enrollment

A total of 275 (71.8%) patients had treatment setting information available. Of these, around half (n = 147, 53.5%) were treated at tertiary hospitals only, a third (n = 92, 33.5%) at nontertiary centers only, and 13.0% (n = 36) at both tertiary and nontertiary centers (Table 2). The majority of patients (n = 265, 96.4%) received all or some of their treatment at a metropolitan hospital. Just over a quarter of patients (n = 74, 26.9%) attended only private centers. Only five patients (1.8%) were enrolled in a clinical trial during the study period, with all trial enrollments taking place at metropolitan tertiary hospitals.

Table 2.

Number (n) and Proportion (%) of Patients in Each Treatment Setting Group

	n (%)
Sector
Public only	168 (61.1)
Private only	74 (26.9)
Both	33 (12.0)
Level
Tertiary only	147 (53.5)
Nontertiary only	92 (33.5)
Both	36 (13.0)
Location
Metropolitan only	253 (92.0)
Nonmetropolitan only	10 (3.6)
Both	12 (4.4)
Total	275 (100)

It was unknown whether those patients in the sample without any treatment setting information available from the inpatient HMDC data collection (n = 108, 28.2%) did not actually receive any treatment, or whether the patient received treatment only in nonhospital settings, the details of which would not be recorded in the HMDC. In this study, we were made aware of treatments received at nonhospital centers only if they were mentioned in the patient's hospital medical records. Therefore, patients treated only in nonhospital settings were not identified. The majority of patients without treatment setting information were diagnosed with having melanoma (n = 94, 87.0%).

Support services provision

Of the 275 patients with treatment setting information available, 80 (20.9%) patients had formal contact with a social worker, 35 (9.1%) with an occupational therapist, and 32 (8.4%) with a mental health professional. Patients in the least disadvantaged SES quartile had significantly lower odds (OR = 0.29, 95% CI 0.09, 0.93) of formal contact with a social worker than those in the most disadvantaged SES quartile (Table 3). No other significant associations were seen between the odds of consulting with a social worker, occupational therapist, or mental health professional and any other sociodemographic variable studied.

Table 3.

Predictors of the Likelihood That a Patient Consulted with a Mental Health Professional, Social Worker, or Occupational Therapist

	Mental health professional			Social worker			Occupational therapist
	n (%)	OR	95% CI	n (%)	OR	95% CI	n (%)	OR	95% CI
Age group
15–19	9 (8.9)	1.00		29 (28.7)	1.00		17 (16.8)	1.00
20–24	23 (13.5)	1.02	0.40, 2.59	51 (29.8)	1.15	0.57, 2.31	18 (10.5)	0.63	0.20, 2.02
Sex
Male	16 (10.5)	1.00		50 (32.9)	1.00		17 (11.2)	1.00
Female	16 (13.3)	2.05	0.78, 5.38	30 (25.0)	0.49	0.23, 1.03	18 (15.0)	1.14	0.34, 3.84
Location
Metropolitan	21 (13.1)	1.00		41 (25.6)	1.00		23 (14.4)	1.00
Rural/remote	11 (9.8)	0.49	0.17, 1.45	39 (34.8)	1.26	0.54, 2.93	12 (10.7)	2.47	4.80, 12.80
SES quartile
First (most disadvantaged)	3 (5.0)	1.00		24 (40.0)	1.00		8 (13.3)	1.00
Second	13 (18.3)	3.02	0.68, 13.44	19 (26.8)	0.40	0.15, 1.06	10 (14.1)	2.24	0.36, 14.17
Third	9 (12.5)	2.25	0.49, 10.38	23 (31.9)	0.50	0.19, 1.29	6 (8.3)	0.96	0.16, 5.69
Fourth	7 (10.1)	1.42	0.26, 7.64	14 (20.3)	0.29^a	0.09, 0.93	11 (15.9)	5.93	0.82, 43.17
Sector of treating institutions
Public only	28 (17.0)	^b		64 (38.8)	1.00		31 (18.8)	^b
Private only	2 (3.0)			2 (3.0)	0.37	0.03, 5.00	1 (1.5)
Both	1 (3.1)			11 (34.4)	0.70	0.08, 6.07	3 (9.4)
Location of treating institutions
Metropolitan only	31 (12.7)	^b		72 (29.5)	^c		34 (13.9)	^b
Regional only	0 (0)			0 (0)			0 (0)
Both	0 (0)			5 (45.5)			1 (9.1)
Level of treating institutions
Tertiary only	28 (19.4)	1.00		61 (42.4)	1.00		31 (21.5)	1.00
Nontertiary only	2 (2.4)	0.12^d	0.03, 0.58	3 (3.5)	0.12	0.01, 1.10	1 (1.2)	0.02^d	0.001, 0.23
Both	1 (2.9)	0.10^a	0.01, 0.82	13 (37.1)	1.62	0.20, 12.96	3 (8.6)	0.10^a	0.01, 0.79
Cancer type^e
Carcinoma	7 (10.6)	1.00		16 (24.2)	1.00		5 (7.6)	1.00
Leukemia	9 (29.0)	3.68	0.96, 14.10	20 (64.5)	3.02^a	1.01, 9.01	4 (12.9)	0.90	0.20, 4.13
Lymphomas	6 (11.5)	1.09	0.30, 3.92	11 (21.2)	0.51	0.19, 1.37	0 (0)	^c
Central nervous system	0 (0)	^c		14 (66.7)	5.17^a	1.49, 17.90	15 (71.4)	63.34^d	10.26, 391.01
Bone	3 (42.9)	7.09	0.95, 53.11	4 (57.1)	2.69	0.48, 15.05	6 (85.7)	84.60^d	5.53, 1293.88
Soft tissue sarcoma	2 (18.2)	4.08	0.56, 29.78	6 (54.5)	4.71	0.88, 25.27	4 (36.4)	12.05^a	1.63, 88.98
Germ cell	4 (8.0)	1.74	0.36, 8.41	8 (16.0)	0.43	0.13, 1.50	1 (2.0)	0.35	0.03, 3.78
Melanoma	1 (3.1)	0.59	0.06, 5.67	1 (3.1)	0.10^a	0.01, 0.94	0 (0)	^c

p < 0.01

Initial examination of the logistic regression yielded inordinately large parameter estimates for sector of treating institutions, location of treating institutions, and level of treating institutions. Sector of treating institutions was removed due to its multicollinearity (r = −0.7–-1.0) with level of treating institutions. Location of treating institutions was removed due to the presence of empty cells.

Initial examination of the logistic regression yielded inordinately large standard error of B, indicating a problem with empty cells. Therefore, this variable/variable level was removed from the model.

p < 0.001

Patients with unknown cancer type (n = 2) were excluded.

Compared with patients with a carcinoma, the odds of consulting with a social worker were higher for patients with leukemia (OR = 3.02, 95% CI 1.01, 9.01) or a CNS tumor (OR = 5.17, 95% CI 1.49, 17.90) and lower for patients with melanoma (OR = 0.10, 95% CI 0.01, 0.94). The odds of consulting with an occupational therapist were greater for patients with a CNS tumor (OR = 63.34, 95% CI 10.26, 391.01), bone tumor (OR = 84.60, 95% CI 5.53, 1293.88), or soft tissue sarcoma (OR = 12.05, 95% CI 1.63, 88.98) (Table 3).

All patients who consulted with a social worker, occupational therapist, or mental health professional had received treatment at a metropolitan center. Compared with patients treated at only tertiary centers, those treated at only nontertiary centers had significantly lower odds of consulting with a mental health professional (OR = 0.12, 95% CI 0.03, 0.58) or an occupational therapist (OR = 0.02, 95% CI 0.001, 0.23) (Table 3).

Discussion

This study empirically investigated patterns in clinical trial enrollment and supportive care services provision to AYAs diagnosed with having cancer and treated at adult facilities in WA.

Consistent with patterns of clinical trial enrollment described elsewhere for AYAs,^1,4,11 the proportion of patients enrolled in a clinical trial was low (<2%), and all enrollments occurred at tertiary centers. While exploratory analyses could not be performed here due to the small number of enrollments, other Australian and overseas studies show that clinical trial enrollment is higher for AYAs treated at tertiary and pediatric institutions compared with those treated at adult centers.^1,8,10,11 Recently, a U.S. study found that the introduction of an AYA-dedicated oncology program led to an increase in the proportion of patients enrolled in a clinical trial.³⁰ In Victoria, Australia, around one-fifth of patients referred to the AYA cancer program, onTrac@PeterMac, in the two years following the program's establishment were offered participation in clinical research studies, 80% of whom agreed to participate.²² Although yet to be formally evaluated, it is hoped that the YCS in WA will increase clinical trial awareness among AYA patients and clinicians.

Overall, access to support services by patients in this study was low. Similarly, U.S. research has shown that a substantial proportion of AYAs with cancer who reported needing mental health, physical/occupational therapy, or pain management services did not receive them,^31,32 and unmet service needs were linked to worse health-related quality of life.³¹ AYAs with cancer can experience short- and long-term effects of treatment¹⁸ and suffer from anxiety, depression, a sense of isolation, and poor self-perception.^4,16,33–36 Age-appropriate education and support can help patients feel empowered and adapt to their illness and facilitate treatment compliance.^33,37,38 In Victoria, where the AYA cancer care program, onTrac@PeterMac, has been operating since 2004, almost two-thirds of AYAs accessed some form of local supportive care, which is more than double the proportion of patients in our study.³⁹ The advent of the YCS, providing care coordination, psychosocial assessments, and support services to patients, is expected to significantly improve access to support services by AYAs in WA.

In our study, patients with leukemia, neurological cancers, and bone and soft tissue sarcoma were more likely to see a social worker or occupational therapist than patients with a carcinoma, which is not unexpected given the effect these cancer types can have on musculoskeletal, neurological, and/or cognitive functioning. Patients with these cancers also tend to spend longer periods in hospital as an inpatient and, consequently, would have greater opportunities to access inpatient social work and occupational therapy services. Long periods spent away from school, work, usual activities, and family and friends may also necessitate greater need for support services.

The utilization of support services by AYAs with cancer varied with treatment setting. Mental health professionals and occupational therapists were more likely to be seen by patients treated in tertiary centers, highlighting a potential disadvantage for the 27% of patients treated in nontertiary centers only. In addition, only patients who attended a metropolitan center for treatment had formal contact with a mental health professional, social worker, or occupational therapist. A study of oncology services in regional Australia found that only 39% of rural hospitals administering chemotherapy reported having dedicated oncology counseling services, 30% reported having a psychologist, and 50% reported social workers.⁴⁰ As nonmetropolitan patients are often diagnosed with having cancer at a more advanced stage and have poorer outcomes than metropolitan residents,^41–46 greater efforts are needed to ensure that the supportive care needs of this group are addressed.

Variations in access to support services across treatment settings highlight the importance of having an AYA-specific cancer program such as the YCS, which should facilitate greater collaboration among clinicians and treatment centers across the state, and potentially reduce inequities in service provision. Ensuring that all AYA patients can benefit from the YCS in WA—a geographically large state with a relatively small population—is likely to present a challenge. Teleconferencing or web-based care integration and support services may be required to ensure that nonmetropolitan patients are not disadvantaged, and the current availability and accessibility of such services in nonmetropolitan WA need further elucidation. Studies are also needed to evaluate how AYA cancer services provision has changed since the development of new AYA cancer care guidelines and services such as the YCS, and the findings of the current study provide some information on the state of services provision before these initiatives were implemented. It is also important that future research examine how services provision ultimately affects patient outcomes.

Some limitations exist with our study. First, the date and location at which patients received support services were not available; therefore, the temporal interpretation of the noted associations between the provision of each service and sociodemographic or treatment setting variables could not be determined. We may have also underestimated the number of mental health professional, social worker, and occupational therapist consultations, especially among patients treated as outpatients or outside hospital settings, as only those recorded in patient medical records were known to study researchers. Ninety-four (72%) patients with melanoma had no treatment setting information available as they are more likely to have minor surgeries performed in private rooms rather than requiring inpatient treatment and, consequently, would not have had records in the HDMC, which was used to identify patients' treatment locations. Efforts to seek patient treatment details from private rooms would be useful in future studies to confirm the generalizability of study findings. Finally, we obtained details only of services actually received by patients, so it is not known how many centers across WA did have support services available, but did not provide them to patients in this study.

Conclusions

This study investigated access to clinical trials and supportive care services by AYAs diagnosed with having cancer in WA. Variations in accessibility across treatment settings highlight the need for centralized AYA cancer care, with greater collaboration between specialists and treatment centers, to maximize access to clinical trials and multidisciplinary care for all patients. The study findings provide much needed population-level benchmark figures against which changes to AYA cancer services delivery in WA can be evaluated.

Footnotes

Acknowledgments

The authors would like to thank Meg Plaster, Helen Lund, and Peter Tracey for their assistance during the study. This research was supported by the Western Australian Cancer and Palliative Care Network.

Author Disclosure Statement

No competing financial interests exist.

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Patterns in Clinical Trial Enrollment and Supportive Care Services Provision Among Adolescents and Young Adults Diagnosed with Having Cancer During the Period 2000–2004 in Western Australia

Abstract

Purpose:

Methods:

Results:

Conclusion:

Introduction

Methods

Study population

Data collection

Electronic administrative health data

Clinical chart data

Statistical analyses

Results

Sample

Treatment settings and clinical trial enrollment

Support services provision

Discussion

Conclusions

Footnotes

Acknowledgments

Author Disclosure Statement

References