System Performance Indicators for Adolescent and Young Adult Cancer Care and Control: A Scoping Review

Abstract

Adolescents and young adults (AYAs) with cancer represent a unique group with unmet needs. Metrics and quality indicators are important for evaluating AYA cancer care. The purpose of this study is to describe the quality indicators in a Canadian context that are used for AYA (15–39 years of age) cancer care and control. The Arksey and O'Malley methodological framework was applied to undertake a scoping review of the peer-reviewed and gray literature for indicators related to AYA cancer care and control. OVID Medline was searched from January 1995 until April 2018 for English language articles. Inquiries were made to AYA cancer organizations and a Google search conducted to identify unpublished material. Articles were included if they incorporated AYAs and contained cancer care indicators. Data were summarized at the article and indicator level. A total of 610 abstracts were reviewed. Eighty-nine full-text articles and reports were assessed for eligibility, with 19 included in analyses which identified 146 indicators or indicator concepts. Most of the indicators were specific to the AYA age group (65.8%) and dealt with the active care theme (57.5%), almost half focusing on guideline adherence and treatment (26.4%) and multidisciplinary/specialized care (20.7%). Notable deficits in indicators were in fertility, psychosocial care, and prevention. Important progress has been made internationally and within Canada on developing indicators for AYA cancer care and control. However, there is a lack of well-defined AYA-specific cancer care indicators developed through a consensus process.

Introduction

It has been recognized widely that adolescents and young adults (AYAs) with cancer are a unique population due to the nature of their diseases and their particular needs, which are related to their stage of life and development.^1,2 There is no international consensus on the age range for AYAs, although the lower limit is generally agreed upon as 15 years of age.³ The upper limit varies, with 24, 29, or 39 years of age being used depending on the context and country.³ The Progress Review Group, formed by the National Cancer Institute in the United States with the LiveStrong Foundation, has recommended a range of 15–39 years.⁴

AYAs face many hurdles throughout diagnosis, treatment, and survivorship.^1,2,5 The types of cancer prevalent in this age group differ from those common in children and older adults.⁶ This presents many challenges for the care of AYA patients, including the availability of clinical trials, as well as appropriate services and expertise that may not be available in their treatment centers due to the dichotomous pediatric and adult health care systems which exist in many countries. There have been numerous approaches to improving cancer care for AYAs, including the development of age-specific units in the United Kingdom and AYA-focused organizations such as CanTeen in Australia.^7–9

Metrics are important for evaluating AYA cancer care, and ensuring that programs and policies being implemented are addressing relevant problems while improving outcomes for this population. A quality indicator is defined as a measure that can be used to monitor or evaluate the impact of governance, management, clinical, or support processes on system or patient outcomes.^10,11 There have been many indicators developed by cancer institutions and agencies to evaluate and monitor cancer care.^12–14 Due to the aforementioned differences in AYAs with cancer it is important to examine which indicators have been developed with consideration for this unique population. This will help guide the development and application of indicators to monitor and evaluate their cancer care.

The Canadian Task Force on AYAs with Cancer (TF) was formed in 2008 to address issues of cancer care and control for the age group 15–29 years. As part of their work the TF developed a set of principles and recommendations,¹⁵ and a plan for action in Canada.¹⁶ In 2017, the System Performance Working Group of the TF reported on metrics for AYA cancer care based on these recommendations.¹⁷ As a parallel process, the group worked on developing a list of system performance indicators needed to monitor and evaluate important metrics and outcomes in AYA cancer care in Canada. The purpose of this study is to describe the quality indicators which are used currently for AYAs (15–39 years of age) cancer care and control in a Canadian context.

Methods

An initial review of the literature was undertaken to assess the current state of indicator development for AYA cancer care and control. A search of OVID found no previous scoping review on this topic. A scoping review is a summary of the literature that addresses broad questions and can be used to identify key concepts or gaps in knowledge. The Arksey and O'Malley¹⁸ methodological framework was applied to undertake a scoping review of the peer-reviewed and gray literature for indicators related to AYA cancer care. OVID Medline was searched from January 1995 until April 2018 for English language articles. The search strategy was adapted from one used in a review of childhood cancer care indicators^19,20 and is provided in Supplementary Appendix SA1. A search of the gray literature, which consists of materials produced outside of traditional academic publications, was conducted using the search terms adolescent, young adult, cancer, and quality indicator. Queries were sent to international groups involved in AYA cancer care and control regarding their use of quality indicators. These were CanTeen, Teenage Cancer Trust, Children's Oncology Group, and Critical Mass. Websites of Canadian cancer agencies and the Rossy Cancer Network were also reviewed for AYA indicator content. E-mails were sent to key individuals in the cancer agencies to verify findings on websites.

Articles or gray literature were included if they incorporated AYAs and if the indicator focused on an aspect of cancer care or control. Inclusion of AYAs in the study or report was confirmed if all or a portion of the 15–39-year age range was considered or the mean age reported in the study was between 18 and 50 years. Articles were considered AYA specific if the indicator discussed focused on all or part of the AYA age range, or on an AYA-relevant cancer issue such as peer support or fertility. Articles which contained the AYA age range were considered AYA included. Indicator studies were included in the review if the objective was to develop, validate, benchmark, assess, review, or report on an indicator that evaluates system performance, clinical outcomes, or care in the AYA cancer population. Primary prevention of nonprevalent cancers in AYAs (e.g., smoking cessation), and indicators related to procedures not related directly to cancer care, such as breast reconstruction, were considered out of scope for the current review.

The authors C.R. and N.S. reviewed the titles and abstracts independently to assess suitability. If both agreed, the articles were subjected to full-text review; abstracts on which no agreement was reached were referred to S.D.P. who assessed them independently then met with C.R. to discuss ratings and determine eligibility. All literature or indicators collected from organizations devoted to AYAs with cancer were selected for full-text review. C.R. and S.D.P. assessed all full texts to determine suitability for the current review based on the inclusion criteria.

Data were abstracted by C.R. for descriptive analysis of both the entire publications and individual indicators. For the publications the following data were abstracted: publication year, study objective, country, type of study, institutional level, and age range. Data abstracted for each indicator were: age range(s), gender, type of indicator, disease, theme, indicator construct, indicator name, and indicator definition. Types of indicators included outcome (metrics related to functionality and survival of patients), process (metrics related to the implementation of care such as adherence to guidelines), and structure (metrics related to adequacy of facilities or equipment, administrative structure, staff qualifications).¹⁰ Data were summarized at both the article and indicator levels. Indicator themes were taken from the framework proposed by Fernandez et al.¹⁵ which identifies themes and provides key recommendations and priority areas that need to be addressed within the Canadian context to improve care and outcomes for AYAs with cancer. The seven themes are: active therapy and supportive care; psychosocial needs; palliation and symptom management; survivorship; research; education, awareness, and advocacy; and prevention. A theme on economics was also included on the basis of the report by Greenberg et al.²¹

Results

A total of 697 full-text abstracts were identified from OVID, 87 duplicates were removed, and the remaining 610 abstracts were reviewed for eligibility (Fig. 1). The majority (54.1%) were excluded because the study was “not indicator related”; for example, objectives were focused on data quality, identifying associations, predictors, or risk factors, or the development of measurement instruments. Nine documents were identified from the Google search of the gray literature and included in the full-text review. A total of 89 full-text articles and reports were assessed for eligibility, with 19 included in analyses. A majority of full-text exclusions (66.7%) were because the article did not address the AYA age group.

FIG. 1.

Flow diagram of scoping review process.

Articles

The review consisted of 16 articles and 3 reports, with the characteristics of full texts summarized in Table 1. The studies were conducted primarily in North America, within either the United States (26.3%) or Canada (21.0%). Results from the studies were reported mostly at the national level (47.4%), with a focus on the development of indicators (36.8%). Most articles or reports included the AYA subpopulation (15/19) rather than focusing solely on this age group (4/19).

Table 1.

Summary of Article Characteristics

	N	%
Reporting level
Local	5	26.3
National	9	47.4
Provincial/State	5	26.3
Study type
Application/descriptive	4	21.1
Benchmarking	1	5.3
Development	7	36.8
Reporting	4	21.1
Stratification/benchmarking	1	5.3
Validating	2	10.5
Country
Australia	3	15.8
Belgium	1	5.3
Brazil	1	5.3
Canada	4	21.1
China	2	10.5
Germany	1	5.3
Italy	1	5.3
Sweden	1	5.3
United States	5	26.3

Indicators

A total of 146 indicators or indicator concepts were identified in the 19 articles and reports reviewed (Table 2). The majority of indicators referred to the national level were either outcome or process based (Fig. 2). Outcome indicators tended to be reported at the national level with process indicators prevalent at all three levels of reporting (Fig. 2). Very few structural indicators were identified (n = 11/146). Most of the indicators were specific to AYAs (65.8%), focusing solely on the 15–39-year age group. Of the 96 AYA-specific indicators, 48 came from the three reports^17,22,23 while the remaining 48 were from two published articles.^19,21 One of the articles that provided 47 indicators reported results from an initial brainstorming session of concepts and represented a very early stage of indicator development. Of the three reports two included defined indicators^17,22 and one provided high-level concepts for development.²³ Indicators tended to be neither gender (80.1%) nor disease specific (69.2%) (Table 3). The most prominent disease-specific indicators were for testicular (8.2%) and breast (6.8%) cancers (Table 3).

FIG. 2.

Frequency of indicator type by level of reporting Outcome Process Structure.

Table 2.

Summary of Identified Indicators

Author, year published	Age (years)			Gender	Disease	Indicator
Author, year published	Min	Max	AYA subgroup reported	Gender	Disease	Indicator
Wall, 1998³⁸	16	78	16–35	Female	Breast	DDI
Clinical Oncological Society of Australia, 2008²³	15	25	15–25	Both	All cancers	Increased number of available trials
						Increased enrollment of AYA cancer patients
						Assessment at MDT meetings (treatment and psychosocial)
						Referrals from primary care
						Patients entered into late-effects follow-up program
						Recurrence
						Survival
						Psychosocial outcomes
						Education and career outcomes
						Financial outcomes patient's family/partner outcomes financial, psychosocial etc.
						Research activity nonclinical trial
						Research (nonclinical trial) outcomes for example, psychosocial, fertility, biology/translational shared care networks—compliance with agreed standards
						Availability, participation in and efficacy of training program
						Patients who are at private facility who have their care discussed at tumor-specific MDT
						How many patients have a treatment plan
						How many patients have late-effects plans or end-of-treatment guidelines
						Use of national minimum dataset
Olaya, 2010³⁹	19	105	<40	Both	Breast	Proportion of patients receiving SLND alone or with ALD who had clinical stage I/IIA/IIB breast cancer
de Camargo, 2010⁴⁰	0	19	15–19	Both	All cancers	Recurrence
Adolescent and Young Adult Working Party of the Statewide Cancer Clinical Network, 2010²²	15	25		Both	All cancers	Measurable change in cancer awareness and behavior in 15–25-year age group
						Number of appropriate referrals to AYA Cancer Care Coordinators
						Number of patients treated in evidence recommended setting
						Percentage of total number of patients presented at MDT meeting
						Percentage of AYA with documented treatment plans following MDT assessment
						Time from diagnosis to MDT assessment; identification of meetings when goals of care change.
						Number of AYA assessed for eligibility for clinical trials
						Number of clinical trials available to AYA and number of enrollments into clinical trials
						Time from diagnosis to referral to AYA psychosocial team
						AYA patients' place of death
						Number of families confirming appropriate supports and referrals to facilitate optimal end-of-life care
						Number of AYA families with established bereavement plans
						Patients report feeling informed and know where to seek help on completion of treatment
						Number of documented AYA end-of-treatment plans
						Number of referrals to fertility preservation services for adolescents and young adults with a cancer diagnosis.
Greenberg, 2011²¹			AYA—no age range specified	Both	All cancers	Incidence
						Rates of HPV vaccination
						Cervical cancer incidence
						Time of first symptom
						Time of first health care contact
						Time of first oncology visit
						Time of diagnosis
						Time of initiation of treatment
						Specialty of first health care contact
						Number of providers available
						Site of care (pediatric vs. adult; teaching vs. community; AYA focus)
						Patient satisfaction with age and developmental appropriateness of care
						Number of disease-appropriate and age-appropriate clinical trials open in cooperative groups
						Number of AYA-appropriate clinical trials open per center
						Proportion of incident cases enrolled in clinical trial
						Use of protocol-guided therapy
						5-Year overall survival
						5-Year overall event-free survival
						Cause of death (malignancy, complication of therapy, or other)
						Early mortality
						Psychosocial screening assessment of self-efficacy, locus of control, anxiety, and mood at: diagnosis, mid-treatment, end of treatment, survivorship
						Evaluation of patient's family/spouse/supporters' psychosocial health
						Use of mental health and support services
						Impact of cancer on HRQL
						Involvement/timing of palliative care/hospice
						Locus of end-of-life care
						Pain control
						Caregiver costs; work time and income lost
						HRQL (Palliative care)
						Medication and care-provision costs
						Family satisfaction
						QALYs
						Healthy years equivalents
						Willingness to pay
						Incidence of late effects and chronic disease
						Creation and use of a survivor care plan
						Stage of late-effects illness or recurrence at diagnosis (including rates of preclinical diagnosis)
						Attendance at follow-up care (post-transition from primary oncologic care
						Patient knowledge of health history and risk
						Patient satisfaction with care
						Patient self-empowerment
						Compliance with recommended monitoring guidelines (cardiac postanthracycline, breast cancer after chest radiation)
						Cost of surveillance for and treatment of late effects
						Volume and type of health care services used (scheduled vs. emergency)
						Cause-specific mortality
						HRQL (Impact of model of care)
						Measures of educational, social, and vocational achievement
Marnitz, 2012⁴¹	16	86	No AYA subgroup —mean age 39 years	Female	Cervix	Availability, participation in, and efficacy of training program
Vlayen, 2012⁴²	0	95	No AYA subgroup—mean age 34.5 years	Male	Testis	Patients who are at private facility who have their care discussed at tumor-specific MDT
						How many patients have a treatment plan
						How many patients have late-effects plans or end-of-treatment guidelines
						Use of national minimum dataset
						Proportion of patients with testicular cancer undergoing CE-CT or MRI for primary staging
						Proportion of patients with testicular cancer discussed at the MDT meeting
						Number of annual surgically treated patients with testicular cancer per center
						Radiation dose and field in patients with testicular cancer treated with radiotherapy by stage
						Proportion of patients with stage I nonseminoma treated with active surveillance
						Proportion of patients receiving CE-CT or MRI for residual disease assessment at the end of systemic treatment
						Degree and duration of active surveillance in patients with stage I nonseminoma or seminoma
						Proportion of patients with relapsing testicular cancer after curative treatment that are included in a clinical trial
Bristow, 2013⁴³	18	70+	<45	Female	Uterus/ovary	Survival
Bradley, 2013¹⁹	0	18	15–18	Both	All cancers	Psychosocial outcomes
						Education and career outcomes
						Financial outcomes patient's family/partner outcomes financial, psychosocial etc
						Research activity nonclinical trial
						Research (nonclinical trial) outcomes for example, psychosocial, fertility, biology/translational shared care networks—compliance with agreed standards
Decker, 2015⁴⁴	20	69	20–29, 30–39	Female	Cervix	Assessment at MDT meetings (treatment and psychosocial)
						Referrals from primary care
						Patients entered into late-effects follow-up program
Dasenbrock, 2015⁴⁵	18	70+	18–45	Both	CNS/brain	Increased enrollment of AYA cancer patients
CPAC, 2017¹⁷	15	39	15–29, 30–39	Both	All cancers	Number of new cases of cancer (malignant neoplasms) newly diagnosed among AYAs per year, per 100,000 people, age-standardized
			15–29, 30–39	Both	All cancers	RSR as the ratio of observed survival for a group of patients with cancer (malignant neoplasms) to expected survival for members of the general population with the same main characteristics (sex, age, place of residence)
			15–29, 30–39	Both	All cancers	Point prevalence, which is the number (rate) of individuals alive at a specified point in time who have had a previous diagnosis of cancer (malignant neoplasm).
			15–29, 30–39	Both	All cancers	Treatment wait time, defined as the time between definitive diagnosis (date of pathology) and start of treatment (any treatment modality, including surgery) for women diagnosed with breast cancer
			15–29, 30–39	Female	Breast	Proportion of patients with breast cancer receiving surgery at a specialized center
			15–39	Both	Colorectal	Proportion of patients with colorectal cancer receiving surgery at a specialized center
			15–19, 20–29, 30–39	Both	All cancers	The percentage of AYA (15–39 years of age) cancer patients who die in hospital versus nonhospital locations
			20–24, 25–29, 30–34, 35–39	Both	All cancers	Percentage of AYAs (20–39 years of age) reporting ever having had cancer who achieved postsecondary education
			20–24, 25–29, 30–34, 35–39	Both	All cancers	Percentage of AYAs (20–39 years of age) reporting ever having had cancer who did not work at a job in the last 12 months
			20–24, 25–29, 30–34, 35–39	Both	All cancers	Percentage of AYAs (20–39 years of age) reporting ever having had cancer with a current personal income of less than $40,000
			18–29	Both	All cancers	Percentage of negative responses reported by AYA (18–29 years of age) cancer patients for dimensions of care (access to care, coordination and continuity of care; emotional support; information, communication, and education; physical comfort; and respect for patient preferences) in the AOPSS
			15–39	Both	All cancers	Proportion of cancer research grants from major funding organizations between 2005 and 2013 that involve AYAs
			15–17	Both	All cancers	Clinical trial accrual: the ratio of the total number of patients 15–17 years of age newly enrolled in cancer-related clinical trials to the number of new incident cancer cases in patients 15–17 years of age
			15–39	Both	All cancers	The number and proportion of clinical trials addressing the most prevalent cancers in AYAs (15–39 years of age)
			15–39	Female	All cancers	Ratio of incident cases (2015) of cancer in adolescent and young adult women (15–39 years of age) to number of in vitro fertility centers, by province, all cancers
Forsberg, 2017⁴⁶	18	None	18–30, 30–40	Both	Colorectal	Prevalence of PCCRC for colonoscopies performed during 2001–2010
Dasenbrock, 2017⁴⁷	18	None	18–45	Both	CNS/brain	30-Day readmission
Roos, 2017⁴⁸	18+	None	18–79, median 39	Both	Lymphoma	Baseline staging investigations
						Discussion in MDM
						Type of chemotherapy
						No. of cycles of chemotherapy
						Radiotherapy planning technique
						Use of DVHs for organs at risk
						Radiotherapy dose
						Radiotherapy timing
Su, 2017⁴⁹	18	69	<40	Female	Breast	Preoperative core biopsy
						HER-2 testing
						Sentinel lymph node biopsy
						Breast conserving surgery
						Receiving at least four cycles of adjuvant chemotherapy
						Adjuvant radiotherapy after mastectomy
						Hormonal treatment
Pucciarelli, 2017⁵⁰	18	None	18–49	Both	Colorectal	LOS of the index hospitalization
						In-hospital mortality
						30-Day readmission
He, 2017⁵¹	0	None	5 Year groups	Both	All cancers	Age-specific incidence rate

AYA, adolescent and young adult; DDI, diagnostic delay index; MDT, multidisciplinary team; SLND, sentinel lymph node dissection; ALD, axillary node dissection; HPV, human papilloma virus; HRQL, health-related quality of life; QALY, quality adjusted life years; MRI, magnetic resonance imaging; CE-CT, contrast-enhanced computed tomography; CNS, central nervous system; RSR, relative survival ratio; AOPSS, Ambulatory Oncology Patients Satisfaction Survey; PCCRC, postcolonoscopy colorectal cancer; MDM, multidisciplinary meeting; DVH, dose/volume histogram; LOS, length of stay; CPAC, Canadian Partnership Against Cancer.

Table 3.

Summary Statistics of Indicator Characteristics (n = 146)

	n	%
AYA focus
AYA included	50	34.2
AYA specific	96	65.8
Gender
Not gender specific	117	80.1
Female	17	11.6
Male	12	8.2
Disease
All cancers	101	69.2
Breast	10	6.8
Cervix	4	2.7
CNS	3	2.1
Colorectal	5	3.4
Lymphoma	8	5.5
Testis	12	8.2
Uterus/ovary	3	2.1

A summary of themes and constructs addressed by the indicators is shown in Table 4. More than half of the indicators dealt with the active care theme (57.5%). Within this theme, 2 of 10 identified constructs, guideline adherence and treatment (27.4%), and multidisciplinary/specialized care (21.4%), accounted together for almost half the identified indicators (Table 4). Only 1/84 indicators in active care addressed fertility as “Number of referrals to fertility preservation services for adolescents and young adults with a cancer diagnosis.”²² A single indicator (4.2%) addressed fertility in survivorship focusing on the availability of in vitro fertilization (IVF) clinics. The psychosocial needs theme was only addressed by 2.7% (4/146) of the indicators examining screening, service use, caregiver psychosocial health, and general outcomes (Table 4). The prevention theme was only represented by a single indicator identified during the review process (0.7%). Clinical trials, another important aspect of AYA cancer care, were covered by 11 indicators, 7 under the active care theme which addressed enrollment and 4 under research theme that addressed availability (Table 4).

Table 4.

Summary of Indicators by Construct and Theme

Theme—construct	N	%
Active care	84	57.5
Care plans	2	2.4
Clinical trials enrollment	7	8.3
Diagnostic	5	6.0
Fertility	1	1.2
Guideline adherence/treatment	23	27.4
Length of stay/readmission	4	3.6
Multidisciplinary/specialized care	18	21.4
PROs (QoL, satisfaction of care, patient/family finances)	3	3.6
Survival/mortality—treatment	11	13.1
Wait times	10	11.9
Economic	4	2.7
Economic/system cost	2	50.0
PROs (QoL, satisfaction of care, patient/family finances)	2	50.0
Education and awareness	2	1.4
Education	1	50.0
PROs (QoL, satisfaction of care, patient/family finances)	1	50.0
Palliation	11	7.5
Economic/system cost	1	9.1
Multidisciplinary/specialized care	4	36.4
PROs (QoL, satisfaction of care, patient/family finances)	3	27.3
Supportive care	3	27.3
Prevention	1	0.7
Vaccination rate	1	100.0
Psychosocial	4	2.7
Multidisciplinary/specialized care	1	25.0
PROs (QoL, satisfaction of care, patient/family finances)	1	25.0
Psychosocial general	2	50.0
Research	16	8.9
Clinical trial availability	4	25.0
Incidence/prevalence	8	50.0
Research (nonclinical trial activity, implementation)	4	25.0
Survivorship	24	16.4
Aftercare	4	16.7
Care plans	4	16.7
Economic/system cost	2	8.3
Employment and education	5	20.8
Fertility	1	4.2
Guideline adherence/treatment type	1	4.2
Late effects	1	4.2
PROs (QoL, satisfaction of care, patient/family finances)	5	20.8
Survival/mortality—in survivorship	1	4.2
Grand total	146	100.0

PRO, patient-reported outcomes; QoL, quality of life.

Discussion

This scoping review examined the current state of indicators for AYA cancer care and control. Some work has been done on the development and reporting of indicators specifically for the AYA cancer population. However, the majority of articles and reports only included AYAs and were not specific to this population. The few AYA-specific indicators included in this review covered many important aspects of cancer care and control, but most were at the earliest stage of development.^17,22 Despite the large number of indicators identified in this review, gaps still exist in key areas important to AYA cancer patients and survivors, particularly in the areas of psychosocial care and oncofertility.

Future fertility is an especially important issue for AYAs with cancer due to the risks associated with treatment. Ronn and Holzer²⁴ highlighted the need for AYAs with cancer to be informed of the fertility risk associated with treatment. In a four-part series these authors explored a wide range of issues relating to oncofertility in Canada.^24–27 The current scoping review found only two indicators that addressed fertility, one focused on the number of referrals to fertility services whereas the other examined IVF service availability to survivors. Neither of these indicators addressed directly the important recommendation that all patients be informed about potential compromise to fertility associated with treatment.¹⁵ An indicator focusing on the number of patients who received information on fertility risks would be important for improving care for AYA patients. However, collection of this type of data for reporting on an indicator regarding the receipt of information may be challenging. Further work needs to be done in the development of indicators for oncofertility to help evaluate how well the system is informing patients of their risk, and its ability to provide appropriate services to AYAs who request consultation on fertility preservation procedures.

Another important area that was lacking is indicators of psychosocial care. AYA cancer patients and survivors have special needs in this area, given their stage of development and the many changes which are occurring in their lives.^5,28–30 Only a single indicator found in this review was fully developed, “time from diagnosis to referral to AYA psychosocial team.”²² Many of the indicators suggested for psychosocial care were still in the brainstorming stage of development, with no clear definition of the metric.^21,23 In particular, screening for psychosocial issues is an important aspect which was not well represented in the indicators relating to this area. Distress has been identified as the sixth vital sign in cancer and screening for distress is recommended for all cancer patients.^31–34 There is a lack of AYA-specific measurement instruments that address psychosocial issues,^35,36 which represents a challenge for the development of both appropriate screening and psychosocial outcome indicators. A lack of appropriate and valid instruments to measure psychosocial outcomes in this population could be a major contributor to the observed gaps in indicator development.

The prevention theme had the fewest identified indicators of all themes described in this article. Prevention is an important area for AYA oncology. However, very little work has been done on the etiology of cancers in AYAs. This lack of knowledge in the area may have contributed to the lack of prevention indicators identified in this review. The review also did not include prevention indicators related to smoking cessation which, for the purposes of this report, were considered to be indicators more broadly relevant to population health and prevention of cancers in older adults, such as lung cancer. Prevention of cancers in AYAs is an important area for further research.

In Canada some work has been done to develop a set of performance indicators for AYA cancer care and control. A list of indicators with definitions and technical specifications was developed for the report from the Canadian Partnership Against Cancer (CPAC).¹⁷ However, a formal approach to selecting the indicators was not taken. The CPAC report¹⁷ covered key areas of AYA cancer care and control based on the recommendations and priorities described by Fernandez et al.¹⁵ The indicators were selected by considering the feasibility of obtaining data, which excluded many potential indicators in important areas that lack data. An important issue that is highlighted by the CPAC document¹⁷ is the inability to report nationally by stratifications such as disease, risk group, or province. An example of this issue in the CPAC report is the “place of death” indicator that could only be reported provincially for Ontario and Quebec.¹⁷ Cell size issues are especially challenging for many disease-specific indicators related to diseases that have a low incidence, leading to concerns on privacy.

Australia has contributed also to the development of AYA-specific indicators for cancer care.^22,23 The Australian indicators cover important concepts such as clinical trial enrollment, multidisciplinary care, referrals for psychosocial care, and fertility preservation.^5,22,24,37 Interestingly these concepts are also described in the recommendations and principles of care for AYA cancer care in Canada.¹⁵ Given the similarity of issues among countries with respect to AYA cancer care and control, and the small sample sizes within some disease groups, international cooperation would be beneficial. Cooperation could include the development of key indicators, minimum datasets, and joint reporting. The ability to generate international comparisons would greatly facilitate many aspects of AYA cancer care and control, including program evaluation and benchmarking.

A limitation of this scoping review is that the exercise focused only on a single database, OVID. However, this was thought to be appropriate as the review focused mainly on the gray literature. It was believed that most indicators in use currently would not be published in the scientific literature because most are reported by government agencies and may not have academic papers associated with their development.

Although the development of indicators specifically for the AYA cancer population is relatively recent, important progress has been made internationally and within Canada. This review has found that there is a lack of well-defined AYA-specific indicators for cancer care and control, developed through a consensus process. The CPAC report¹⁷ represented the first identification and application of indicators for AYA cancer care and control at the national level in Canada. Although comprehensive, the indicators were chosen based on data accessibility and availability, and may not represent the most important indicators to capture for AYA cancer care.¹⁷ It will be important to create a consensus-based list of indicators related particularly to AYA cancer care and control in a Canadian context, regardless of their current feasibility, to provide a basis for the development of minimal datasets. The TF has laid a strong groundwork for the development of system performance indicators in Canada, particularly through the work of Fernandez et al.¹⁵ and Greenberg et al.²¹ Fernandez et al.¹⁵ provided a framework that was developed with representation from all provinces and stakeholder groups, including patients and families. The work of Greenberg et al.²¹ provides an initial list of metrics and a starting point for developing a consensus-based list of AYA cancer care indicators for Canada. As programs are developed in Canada with the goal of improving outcomes in AYAs with cancer it will be important to have indicators to help monitor progress and ensure that programs implemented are helping achieve intended outcomes. However, along with the development of metrics there is an urgent need to focus on developing AYA-specific data and integrating the AYA age group into existing databases to ensure the feasibility of reporting relevant indicators for this population, not only in Canada but internationally.

Footnotes

Acknowledgments

The authors acknowledge valuable contributions from Pandora Patterson (CanTeen), David Freyer (Children's Oncology Group), and Heidi Adams (Critical Mass), the Pediatric Oncology Group of Ontario (POGO), the Atlantic Provinces Pediatric Hematology Oncology Network, and the Canadian Partnership Against Cancer.

Author Disclosure Statement

No competing financial interests exist.

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