- •Metrics for evaluating and monitoring are essential for successful programs of cancer care and control.
- •Healthcare metrics for adolescent and young adult (AYA) patients with cancer have not been researched adequately.
- •This article provides a first set of indicators in Canada for AYAs (15-39 years of age) with cancer, a population with special needs who have been systematically under-served.
- •The proposed indicators can serve as metrics to evaluate and monitor changes in AYA cancer care and control.
Closing the gap: research and care imperatives for adolescents and young adults with cancer: a report of the Adolescent and Young Adult Oncology Progress Review Group.
South Australian adolescent and young adult cancer care pathway.
Development of a Comprehensive List of Potential AYA Cancer Care Indicators
Comprehensive Indicator List
South Australian adolescent and young adult cancer care pathway.
Indicator List Reduction
N = 11
N = 13
N = 8
N = 11
|Final meeting and ranking|
N = 10
Is this indicator important and appropriate from a systems perspective for managing the care of AYA cancer patients?
Does this indicator capture an issue relevant to improving quality of care for AYAs with cancer?
If initiatives were taken in the healthcare system, would we expect to see change in this indicator?
|Proportion of AYA patients who had fertility preservation discussion before treatment||5||3||5||90.90%||5||1||5||90.90%||5||3||5||81.80%||3||1|
|Proportion of AYA patients treated according to a clinical trial protocol||4||2||5||81.80%||5||2||5||81.80%||4||3||5||63.60%||10||2|
|Time from first healthcare visit with symptom to diagnosis||5||2||5||72.70%||5||2||5||90.90%||4||0||5||72.70%||14||3|
|Proportion of AYA diagnosed with cancer who have met with or are referred to a social worker||4||2||5||72.70%||4||2||5||54.50%||4||1||5||54.50%||20||4|
|Proportion of AYA diagnosed with cancer reporting positive ratings for satisfaction of active care||4||2||5||63.60%||4||2||5||54.50%||4||1||5||63.60%||22||5|
|Proportion of patients presented at multidisciplinary team meeting||4||2||5||63.60%||4||2||5||54.50%||3||2||5||45.50%||23||6|
|Proportion of AYA diagnosed with cancer who report having knowledge about diagnosis and treatment options||4||3||5||60.00%||3||2||5||45.50%||4||1||5||54.50%||24||7|
|Proportion of AYA patients referred for fertility treatment||4||1||5||54.50%||4||2||5||72.70%||5||2||5||63.60%||26||8|
|Proportion of patients who are provided with a treatment summary at end of treatment (record of cancer treatment received)||5||3||5||90.90%||5||3||5||81.80%||5||3||5||81.80%||5||1|
|Proportion of AYA patients who have access to age-appropriate resources for educational, vocational, and psychosocial support||4||2||5||81.80%||5||3||5||81.80%||4||2||5||72.70%||8||2|
|Proportion of AYA patients with cancer who received reproductive counseling in follow-up care||5||2||5||81.80%||5||2||5||81.80%||5||3||5||72.70%||9||3|
|Proportion of female cancer survivors who received chest radiation and have been screened for breast cancer according to follow-up guidelines||5||2||5||81.80%||5||2||5||72.70%||5||2||5||72.70%||12||4|
|Mean HRQL score of cancer survivors aged 15-39 years post treatment||4||1||5||72.70%||4||2||5||81.80%||4||2||5||54.50%||16||5|
|Proportion of treatment centers with AYA-specific survivorship programs||4||2||5||63.60%||3||1||5||36.40%||4||2||5||72.70%||25||6|
|Proportion of programs that have psychology or psychiatry support available for AYA patients||5||3||5||90.90%||5||2||5||63.60%||4||2||5||72.70%||7||1|
|Proportion of AYA patients screened for distress||5||1||5||72.70%||5||1||5||81.80%||5||2||5||81.80%||15||2|
|Proportion of AYA patients identified to have distress through screening||4||1||5||54.50%||4||1||5||63.60%||4||2||5||54.50%||27||3|
|Proportions of centers offering AYA-specific palliative care services||5||2||5||90.90%||4||3||5||90.90%||4||2||5||81.80%||4||1|
|Proportion of facilities offering palliative home care programs for AYA patients||4||2||5||81.80%||4||3||5||63.60%||4||2||5||54.50%||13||2|
|Proportion of AYA patients who die in hospital||3||1||5||45.50%||4||0||5||54.50%||3||0||5||27.30%||31||3|
|AYA progression or event-free survival||5||4||5||100.00%||5||5||5||100.00%||5||2||5||72.70%||1||1|
|AYA overall survival||5||2||5||90.90%||5||2||5||90.90%||5||3||5||90.90%||2||2|
|Cause of death (short and long): proportion of AYA diagnosed with cancer who die of their disease at 5, 10, and 20 years post diagnosis||5||2||5||90.90%||5||2||5||81.80%||4||2||5||63.60%||6||3|
|Proportion of AYA enrolled into clinical trials||5||3||5||81.80%||5||2||5||81.80%||4||2||5||63.60%||11||4|
|Proportion of AYA diagnosed with cancer who are also diagnosed with at least one chronic condition other than original cancer||4||2||5||72.70%||5||2||5||72.70%||4||2||5||54.50%||17||5|
|Proportion of AYA patients accrued to treatment clinical trials||4||1||5||72.70%||5||2||5||63.60%||4||1||5||54.50%||18||6|
|Proportion of funded grants for AYA cancer research||4||1||5||54.50%||4||2||5||54.50%||3||1||5||27.30%||28||7|
|Proportion of GPs reporting that they feel comfortable recognizing common presenting symptoms of AYA cancers||3||1||5||45.50%||4||2||5||54.50%||3||1||5||36.40%||30||8|
|Proportion of oncology professionals with AYA certification/expertise||3||1||4||45.50%||4||2||5||54.50%||4||1||5||72.70%||29||1|
|HPV vaccination rate (primary prevention)||5||1||5||72.70%||4||1||5||63.60%||5||0||5||54.50%||19||1|
|HPV vaccination rate in AYA who are survivors of cancer||4||1||5||63.60%||4||1||5||63.60%||4||0||5||54.50%||21||2|
Indicator (% agreement)
Indicator (% agreement)
|Round 1 n = 10|
|Round 2 n = 9|
|Round 3 n = 9|
recommendation or priority addressed by indicator*From Fernandez et al
|Importance||Potential data source||Cancer System Quality Index quality dimension|
|Survival: a) AYA patient overall survival; b) AYA patient progression or event-free survival||Active care|
|1. Services must be provided to address the unique needs of AYAs with cancer and survivors of cancer in childhood, adolescence, and young adulthood to redress inequities in the care provided to this group relative to both younger and older cancer patients.|
4. Implementation of life-long monitoring and follow-up of survivors of cancer in childhood, adolescence, and young adulthood will provide economic and other societal benefits and help mitigate late- or long-term treatment effects.
|1||Overall survival can be obtained from provincial cancer registries; however, event-free survival requires chart abstraction and is less feasible.||Effective|
|Proportion of AYA patients who have access to age-appropriate resources for educational, vocational, and psychosocial support||Survivorship||4.4 Rehabilitation services should be available to provide quality evidence-based services meeting the range of AYA cancer survivors’ rehabilitation needs (including physical, psychosocial, occupational, and educational).||2||Survey of services offered by institutions†||Responsive/integrated†|
|Cause of death among cancer survivors (short and long): proportion of AYA diagnosed with cancer who die of their disease at 5, 10, and 20 years post diagnosis||Survivorship||4. Implementation of life-long monitoring and follow-up of survivors of cancer in childhood, adolescence, and young adulthood will provide economic and other societal benefits and help mitigate late- or long-term treatment effects.||3||Information is available in administrative databases but there are potential limitations because of a lack of consistency when coding the cause of death|
|Proportion of female cancer survivors who received chest radiation and have been screened for breast cancer according to follow-up guidelines||Survivorship||4.3 Healthcare services and survivorship follow-up guidelines should be available to provide quality, evidence-based, long-term follow-up care for AYA cancer survivors; these healthcare services should be risk-stratified, considerate of patient needs and preferences, and easily integrated into the local healthcare delivery system.||4||Administrative databases contain this information but difficulty may arise when trying to combine treatment data||Effective/integrated|
|Proportion of AYA patients enrolled in clinical trials||Active care and|
|1.5 Opportunities for AYAs with cancer to participate in appropriate clinical research trials must be increased and such patients should be offered entry into any appropriate clinical research trial for which they are eligible.|
5.5 Assessment of determinants of AYA patients’ access to clinical trials, the study of tumor biology, and translational research.
|Proportion of AYA patients who had fertility preservation discussion before treatment||Active care||1.7 Fertility risks and options for considering or not considering fertility preservation must be discussed with each patient.||6||Chart abstraction.‡ This information was the goal of the Canadian Oncofertility Database.|
|Proportion of patients who are provided with a treatment summary at end of treatment (record of cancer treatment received)||Survivorship||4.2 Every AYA cancer survivor should be provided with a record to facilitate transition.||7||Chart abstraction‡||Effective/responsive‡|
|Proportion of AYA diagnosed with cancer who have met with a psychosocial oncology professional||Active care|
|1.2 Age-appropriate care should be delivered and/or supported by interdisciplinary teams populated with age- and disease-specific medical and psychosocial experts able to effectively communicate and provide evidence-based care, including age-appropriate and developmentally appropriate supportive and psychosocial care.|
2.2 The interdisciplinary team should have access to experts in AYA psychosocial care and their services should be offered to all patients and their families.
|Proportion of centers offering AYA-specific palliative care services||Palliation||3.4 AYA-specific interdisciplinary palliative care teams should be established throughout Canada; these teams should be flexible and able to work in both pediatric and adult facilities, as well as in a virtual environment to support patients being cared for in smaller communities or at home.||9||Survey of services offered by institutions†||Accessible/responsive†|
|Proportion of programs that have psychology or psychiatry support available for AYA patients||Psychosocial||2.2 The interdisciplinary team should have access to experts in AYA psychosocial care and their services should be offered to all patients and their families.||10||Survey of services offered by institutions†||Accessible/responsive†|
|Proportion of patients presented at multidisciplinary team meeting||Active care||1.3 AYA cancer patients must be recognized as a special population at a critical developmental stage between childhood dependency and adult independence. Systems should be in place to ensure interdisciplinary collaboration, coordination, and transition between pediatric and adult healthcare providers, and to develop and promote linkages with relevant community-based resources.||11||Chart abstraction‡||Integrated/efficient‡|
|Proportion of AYA with cancer who received reproductive counseling in follow-up care||Survivorship||4.1 Discussion and education about the survivorship phase should begin during active treatment to prepare the patient and family for the transition to survivorship; this must include discussion of potential long-term and late effects of treatment.||12||Chart abstraction‡||Responsive/integrated‡|
|Proportion of AYA patients screened for distress with standardized AYA-specific tools (CDS-AYA or other)||Psychosocial||2.1 Implementation of routine psychosocial screening of AYAs at diagnosis and intervals throughout the illness trajectory to provide opportunities for early or prophylactic intervention.||13||Some administrative databases capture distress screening; however, currently no AYA-specific screening tools are available for use.∗||Effective/responsive∗|
|Proportion of funded grants for AYA cancer research||Research||Research and the establishment of outcome metrics are required to investigate issues critical to AYAs with cancer and survivors of cancer in childhood, adolescence, and young adulthood to target interventions and healthcare policy to improve all phases of the cancer journey.||14||In Canada, data available from Canadian Cancer Research Alliance database. Nevertheless, extracting AYA research requires a systemic review because coding for age is dichotomous in this database, pediatric or adult.||Equitable|
- Appendix 1
- Appendix 2
- Cancer in adolescents and young adults. A narrative review of the current status and a view of the future.JAMA Pediatr. 2016; 170: 495-501
- Closing the gap: research and care imperatives for adolescents and young adults with cancer: a report of the Adolescent and Young Adult Oncology Progress Review Group.
- Access and models of care.in: Bleyer A. Barr R. Ries L. Whelan J. Ferrari A. Cancer in Adolescents and Young Adults. 2nd ed. Springer, Cham, Switzerland2017: 509-547
- Quality cancer care for adolescents and young adults: a position statement.J Clin Oncol. 2010; 28: 4862-4867
- A review of Canadian health care and cancer care systems.Cancer. 2011; 117: 2241-2244
- Cancer in adolescents and young adults: latest estimates of U.S. survival and years of life affected.J Adolesc Young Adult Oncol. 2011; 1: 37-42
Canadian Partnership Against Cancer. Adolescent & Young Adults with Cancer: Technical Report. Toronto, ON: 2017.
- Adolescents and young adults with cancer: towards better outcomes in Canada.Preamble. Cancer. 2011; 117: 2239-2240
- Barr R. Rogers P. Schacter B. Adolescents and young adults with cancer: towards better outcomes in Canada. Cancer. 2011;117(S10): 2239-2354
- A process for change in the care of adolescents and young adults with cancer in Canada. “Moving to action”: the second Canadian international workshop. International perspectives on AYAO, part 1.J Adolesc Young Adult Oncol. 2013; 2: 72-76
- Principles and recommendations for the provision of healthcare in Canada to adolescent and young adult–aged cancer patients and survivors.J Adolesc Young Adult Oncol. 2011; 1: 53-59
- Measuring the quality of a childhood cancer care delivery system: assessing stakeholder agreement.Value Health. 2013; 16: 639-646
- Measuring the quality of a childhood cancer care delivery system: quality indicator development.Value Health. 2013; 16: 647-654
- Development of a set of strategy-based system-level cancer care performance indicators in Ontario, Canada.Int J Qual Health Care. 2005; 17: 107-114
- Indicators of poor quality end-of-life cancer care in Ontario.J Palliat Care. 2006; 22: 12-17
- Development of ovarian cancer surgery quality indicators using a modified Delphi approach.Gynecol Oncol. 2005; 97: 446-456
- Development of quality indicators for colorectal cancer surgery, using a 3-step modified Delphi approach.Can J Surg. 2005; 48: 441-452
- Systems performance: indicator index.
- Outcomes and metrics.Cancer. 2011; 117: 2342-2350
- South Australian adolescent and young adult cancer care pathway.https://www.sahealth.sa.gov.au/wps/wcm/connect/7ef2330045a683d68fc1af9f9859b7b1/AYA+Cancer+Care+Pathway+Dec+2014.pdf(Accessed May 16, 2019)
- Using and reporting the Delphi method for selecting healthcare quality indicators: a systematic review.PLoS One. 2011; 6: e20476
- Cancer System Quality Index (CSQI): quality dimensions.
- Collaborative multidisciplinary team approach to fertility issues among adolescent and young adult cancer patients.Int J Nurs Pract. 2009; 15: 311-317
- Accrual of adolescents and young adults with cancer to clinical trials.Curr Oncol. 2016; 23: e81-e85
- Oncofertility in Canada: an overview of Canadian practice and suggested action plan.Curr Oncol. 2013; 20: e465-e474
- Cancer Knowledge Network launches the first Canadian Oncofertility Database. The Oncofertility Consortium.http://oncofertility.northwestern.edu/news/cancer-knowledge-network-launches-first-canadian-oncofertility-databaseDate accessed: December 21, 2018
- Classification of treatment-related mortality in children with cancer: a systematic assessment.Lancet Oncol. 2015; 16: e604-e610
- Evaluation of treatment-related mortality among paediatric cancer deaths: a population based analysis.Br J Cancer. 2017; 116: 540-545
- Lack of treatment-related mortality definitions in clinical trials of children, adolescents and young adults with lymphomas, solid tumors and brain tumors: a systematic review.BMC Cancer. 2014; 14: 612
- Accuracy of cause of death data routinely recorded in a population-based cancer registry: impact on cause-specific survival and validation using the Geneva Cancer Registry.BMC Cancer. 2013; 13: 609
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