Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia

Abstract

More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and Medical Research Council guidance, we formed a multidisciplinary working group (n = 4 psychosocial researchers, n = 4 psychologists, n = 4 AYA cancer survivors, n = 2 oncologists, n = 2 nurses, and n = 2 social workers), defined the scope of the guidelines, gathered evidence via a systematic review, graded the evidence, and surveyed AYA cancer care providers about the feasibility and acceptability of the guidelines. The guidelines recommend which AYAs should have their social well-being assessed, who should lead that assessment, when assessment should occur with which tools/measures, and how clinicians can address AYAs' social well-being concerns. A key clinician, who is knowledgeable about AYAs' developmental needs, should lead the assessment of social well-being during and after cancer treatment. The AYA Psycho-Oncology Screening Tool is recommended to screen for social well-being needs. The HEADSSS Assessment (Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment) can be used for in-depth assessment of social well-being, while the Social Phobia Inventory can be used to assess social anxiety. AYA cancer care providers rated the guidelines as highly acceptable, but discussed many feasibility barriers. These guidelines provide an optimal care pathway for the social well-being of AYAs with cancer. Future research addressing implementation is critical to meet AYAs' social well-being needs.

Introduction

More than 1000 young Australians between the ages of 15 and 25 are diagnosed with cancer each year. Survival rates for adolescents and young adults (AYAs) diagnosed with cancer are now nearly 90%, meaning most AYAs with cancer will be expected to resume their age-appropriate societal roles in school or work following completion of their treatment.¹ However, AYA cancer survivors report an average of 14 poor mental health days each month, with specific mental health concerns, including depression, anxiety, post-traumatic stress, and fear of cancer recurrence.^2,3 Survivors also report more missed work days and more days in bed, unable to participate in typical social activities due to poor health, compared with AYAs without a history of cancer.⁴

These ongoing social and emotional challenges have an immense cost on young people's well-being, and also on the Australian society as a whole, with the estimated lifetime cost of reduced workforce participation among AYA cancer survivors totaling $290.1 million.⁵

The Youth Cancer Services (YCS) have been developed to provide support to address AYAs' social and emotional needs during and after cancer treatment, through use of the Psychosocial Care Manual pathway.⁶ However, data evaluating the implementation of this framework have found that psychosocial staffing shortages,⁷ coupled with Australian oncology health care providers underestimating the range and depth of AYAs' psychosocial concerns,⁸ have left Australian AYAs with cancer continue to report unmet social needs, such as challenges navigating engagement with education or work, as well as poor mental health, long after their treatment has concluded.

Internationally, guidelines have been key first steps in addressing unmet needs and upskilling health care professionals, on the path toward improving the psychosocial care of young people with cancer.^9–14 While there is international consensus that AYA cancer care should include a multidisciplinary team of medical and psychosocial health care professionals and that AYAs should be provided accessibly and equitable care for their psychosocial needs from diagnosis through survivorship,¹⁵ there is no evidence to support the applicability or efficacy of existing international guidelines within the Australian health care system.

This is problematic because Australia's model of care for AYAs with cancer is quite different from those across the United States, Canada, and the United Kingdom, and the age ranges to which AYA cancer care and resources cater are different.¹⁵ Through the YCS, Australian AYAs with cancer have access to an AYA-specialized multidisciplinary team of cancer care experts through major hospitals across the country, but they must be treated within the pediatric or adult wards. Australia also has a unique geographic distribution, with the major proportion of the population concentrated around coastlines of the country, and vast amounts of rural area occurring in between, requiring many AYAs to travel significant distances to access cancer care.^16,17 While the United Kingdom has a similar national youth cancer service, they have the added advantage of dedicated teenage and young adult cancer wards available at hospitals across the country.

The United Kingdom is also much smaller than Australia and does not pose as many geographic challenges to accessing AYA cancer care.^15,18 Lastly, in the United States and Canada, there have been guidelines and frameworks established to guide youth cancer care, but there is no singular, national youth cancer service to promote adherence to those guidelines and frameworks, as in the United Kingdom or Australia.^11,12,19 To build on an international body of work^{6,11,18,20–23} and address both young people's unmet care needs and health care professionals' skill/knowledge needs, we aimed to develop specific guidelines for caring for the social well-being of AYAs with cancer in Australia.

Methods

As there is no consensus on how the social impacts of a cancer diagnosis on AYAs should be defined and measured,²² for the purpose of these guidelines, we use the term social well-being, drawing from the model proposed by Ferrell et al., in which social well-being encompasses the following domains: family distress, roles and relationships (peers, romantic partners, and family), affection/sexual function, appearance, employment/education, and finances.²⁴

Developing the guidelines

We followed the steps recommended by the Australian National Health and Medical Research Council (NHMRC) guidance on developing clinical guidelines (Fig. 1).

FIG. 1.

Developing the guidelines.

In November 2020, 18 individuals joined the working group: 4 psychosocial researchers, 4 psychologists, 4 AYA cancer survivors, 2 oncologists, 2 nurses, and 2 social workers. Two working group meetings were held via Microsoft teams in November 2020 and February 2021, to agree on the plans for and scope of the guidelines, with the remainder of the finalization of the guidelines occurring via email to accommodate members' varying schedules.

The scope of the guidelines was determined by identifying key gaps across existing international guidelines for the psychosocial care of AYAs with cancer (reviewed in Table 1). We focused on outlining for what country the guidelines/standards of care were developed, when they were developed, and what the guidelines/standards of care suggested specific to assessing and addressing the social well-being AYAs with cancer. With the exception of the UK's Teenage Cancer Trust Blueprint for Care¹⁸ and the Canteen Australia Psychosocial Care Manual,⁶ most guidelines did not explicitly address social well-being in the context of AYA cancer care. Rather, most guidelines grouped social well-being under psychosocial well-being (as a combination of social and emotional well-being).^{10–12,17,21}

Table 1.

Overview of International Guidance on Caring for the Social Well-Being of Adolescent and Young Adult Cancer Patients and Survivors

Country	Title (year)^Ref.	Recommendations	Gaps in existing recommendations
United States	Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology (2018)¹²	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Family functioning Peer relationships Sexual orientation Participation in social activities Financial well-being Socioeconomic stability (housing, transport, childcare, etc.) Communication with health care professionals about decision-making, personal values, and communication preferences Recommendations for when evaluations should occur: None Recommendations for what tools should be used for evaluations: None Recommendations for addressing concerns: Promote communication among family members Provide advice about social networking and peer support opportunities	No risk factors for poor social well-being identified Unclear how clinicians should assess and address social well-being Only comments on the paucity of tools available to assess the health-related quality of life
United States	NCCN Guidelines for Patients: Adolescents and Young Adults with Cancer (2019)¹³	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: None, but does outline potential problems AYAs may encounter in the areas of school, work and finances Recommendations for when evaluations should occur: None Recommendations for what tools should be used for evaluations: None Recommendations for addressing concerns: Seeking support from a social worker, mental health counselor, or support organizations	No risk factors for poor social well-being identified or specification on areas of social well-being warranting evaluation is provided No specific time points or tools for evaluation are provided Limited recommendations for what AYAs can do to address concerns
United Kingdom	A Blueprint of Care for Teenagers and Young Adults with Cancer (2012)¹⁸	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Peer relationships Intimate relationships Family relationships Support from family and friends Self-esteem and body image Financial well-being Participation in social activities Recommendations for when evaluations should occur: Assessment should occur at regular intervals following diagnosis, and at specific time points such as treatment commencement, completion, relapse, or palliative care Recommendations for what tools should be used for evaluations: An extensive list of possible assessment tools is provided, such as the HEADSSS Assessment¹¹⁵ Recommendations for addressing concerns: Clear instructions provided for how clinicians can support young people in their education and employment, peer relationships, family life, and participation in social activities (e.g., discussing with young people ideas about how they can manage challenges they may experience with peer relationships)	No risk factors for poor social well-being identified No specific time points for evaluation are provided Provides list of possible tools to assess psychosocial well-being, but it is unclear which tools are optimal for assessing social well-being
Canada	Principles and Recommendations for the Provision of Healthcare in Canada to Adolescent and Young Adult-Aged Cancer Patients and Survivors (2011)²¹	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Unclear—suggests evaluation of general psychosocial well-being without clarification of specific domains Recommendations for when evaluations should occur: “Implementation of routine psychosocial screening of AYAs at diagnosis and intervals throughout the illness trajectory to provide opportunities for early or prophylactic intervention” Recommendations for what tools should be used for evaluations: None Recommendations for addressing concerns: “The interdisciplinary team should have access to experts in AYA psychosocial care and their services should be offered to all patients and their families” “Local and community resources—including live, internet-based, and school-based support groups and social media containing age- and disease-specific information—should be identified, compiled, and made readily available to all AYA patients and survivors”	No risk factors for poor social well-being identified No specific domains, time points, or tools for evaluation are provided
Australia	National Service Delivery Framework for Adolescents and Young Adults with Cancer (2008)¹⁶	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Discusses AYAs' psychosocial needs (peer support, educational and vocational assistance/guidance) but does not make recommendations for specific areas that should be assessed Recommendations for when evaluations should occur: A comprehensive needs assessment should be conducted at diagnosis Recommendations for what tools should be used for evaluations: None Recommendations for addressing concerns: General suggestions include: Help young people to find and access peer support to provide them opportunities for social interaction Discuss any psychosocial concerns young people may have to ensure they can be addressed Young people may require additional support in their education or career planning A psychosocial multidisciplinary team is responsible for addressing young people's psychosocial needs	No risk factors for poor social well-being identified No specific domains, time points, or tools for evaluation are provided Unclear what specific steps should be taken if AYAs report social well-being concerns
Australia	Psychosocial Management of AYA Cancer Patients (2014)¹⁰	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Evaluation of psychological well-being and mental health recommended, but no specific evaluation of social well-being recommended Recommendations for when evaluations should occur: As recommended in the AYA Oncology Psychosocial Care Manual—at minimum at diagnosis, early treatment, 6 months postdiagnosis, and treatment completion Recommendations for what tools should be used for evaluations: AYA Oncology Screening Tool Recommendations for addressing concerns: Support AYAs to: Maintain healthy relationships with family, friends, and romantic partners Continue with their education or employment Referral to appropriate community and private mental health professionals if access to internal psycho-oncologists is not possible or appropriate Develop a care plan in accordance with the AYA Oncology Psychosocial Care Manual	No risk factors for poor social well-being identified Unclear regarding: Exactly what areas of social well-being should be monitored Unclear what specific steps should be taken if AYAs report social well-being concerns
Australia	Adolescent and Young Adult Oncology Psychosocial Care Manual (2011)⁶	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: Cancer history, physical systems, family history, education, employment, social activities, habits (drugs and alcohol), relationship and dating history, mental health status, strengths, and supports available Recommendations for when evaluations should occur: A lead clinician should be responsible for conducting evaluations at diagnosis, 2 weeks postdiagnosis, 6–8 weeks postdiagnosis, 6 months postdiagnosis, and at any other time points of significance to young people such as relapse or transition off treatment Recommendations for what tools should be used for evaluations: Australia-specific AYA Oncology Screening Tool^79,108 Cancer-specific, adapted version of the HEADSSS Assessment Recommendations for addressing concerns: Young people should be risk-stratified based on their responses to the psychosocial screening Based on young people's responses and needs, clinicians can provide information, suggest resources, and if needed, and/or codevelop a care plan with the AYA	No evidence base is cited for these recommendations, so it is unclear if these recommendations are opinion-based
Australia	Australian Youth Cancer Framework for Adolescents and Young Adults with Cancer (2017)¹⁷	Recommendations for identifying risk factors for poor social well-being: None Recommendations for areas of social well-being to evaluate: None Recommendations for when evaluations should occur: None Recommendations for what tools should be used for evaluations: AYA Psycho-Oncology Screening Tool Recommendations for addressing concerns: The young person's specific needs and preferences are heard, documented by health professionals, and appropriately responded to Young people receive proactive support and guidance for reengagement with education, training, and employment Ensure evidence-based resources and tools are accessible, to empower young people with the knowledge they need for shared decision-making about cancer care and beyond	No recommendations for risk factors for poor social well-being, areas to evaluate, or tools to use Limited recommendations around addressing social concerns

AYAs, adolescents and young adults; HEADSSS Assessment, Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment.

Few existing guidelines provided recommendations on time points when assessment of social well-being should occur, and where such recommendations were made, they differed across guidelines. In addition, only two sets of guidelines from the United States and Australia discussed risk factors that might indicate which AYAs are most likely to experience poor social well-being and should therefore have their social well-being particularly closely monitored.^6,11,12 Only two guidelines from the United Kingdom and Australia recommended measures or questions to assess social well-being,^6,18 of which the qualitative Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality (HEADSSS) Assessment interview was the only similar recommended measure across both guidelines. No recommendations exist for more brief quantitative screening tools.

Lastly, there were also inconsistencies in terms of whether, and how, existing guidelines provided care pathway recommendations based on evidence versus expert opinion. We therefore aimed to address these gaps by developing evidence-based guidelines that provide clear recommendations on the following:

Aim 1: When should assessment of social well-being occur for AYAs diagnosed with cancer?

Aim 2: What risk factors (clinical, demographic, and social) should be used to identify AYAs with cancer in need of surveillance of social well-being?

Aim 3: Which validated measures should be used to assess social well-being among AYAs with cancer?

Aim 4: Which models of care/care pathways/interventions are effective to address social well-being concerns or deficits among AYAs with cancer?

Systematic review

Following finalization of the scope of the guidelines, we conducted a systematic literature review to gather evidence for the guidelines (Fig. 2).

FIG. 2.

PRISMA diagram³⁰ of review outcomes. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Literature search

C.E.S. registered the protocol for this systematic review with PROSPERO in February 2021 (CRD42021227407). We developed the search strategy collaboratively, in consultation with a medical research librarian (Table 2). Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework,²⁵ C.E.S. searched MEDLINE, PsycINFO, PsycTESTS, EMBASE, CINAHL, and Google on January 7, 2021, for publications dated 2000–2021. We opted to include studies from as early as 2000 because the international shift toward recognizing the specific psychosocial needs of this age group and the importance of providing them age-appropriate care began in the early 2000s, particularly in the United Kingdom, and we did not want to miss any relevant publications from that early time period.^26,27

Table 2.

Search Terms

Concept	Adolescent and young adult	Cancer	Social well-being
Keywords	Adolescen^* ( = adolescence, adolescents etc.) Young adult^* ( = young adults, young adulthood etc.) Young people Teen^* Youth	Cancer^* Neoplasm Tumo?r^* leuk?emia^*	Social adj (wellbeing or well-being) Social adj (functioning or competence or skills) Social participation Social support Interpersonal Relations Peer Group Quality of life Social^*

C.E.S. conducted an updated search on October 8, 2021, to identify any relevant articles published since January. Reference lists of included publications were also hand searched for any additional publications not identified through electronic searches.

Inclusion and exclusion criteria

Included studies were those that focused on any aspects of social well-being of young people with cancer falling under our definition, were peer-reviewed published in English, and those that use either quantitative or mixed-methods research designs. The mean age at diagnosis must be 13–40 years old. While this is broader than the range of 15–25 used in Australia for youth cancer care, it was used to capture literature published in Canada, the United States and the United Kingdom where the age ranges extend between 13 and 40.²⁸ Studies involving both AYAs receiving and completed treatment were included, given social well-being may be disrupted at any stage of treatment or survivorship. Gray literature was also included, such as AYA cancer care manuals, standards, recommendations, and position statements, and other guidelines were also included.

Exclusion criteria included systematic reviews and meta-analyses, purely qualitative studies (considering the system we use to grade the quality of evidence collected ranks qualitative studies as very low-quality evidence in comparison with quantitative studies),^29,30 studies including participants without a history of cancer, and studies that were individual case studies or small case series (i.e., <10 participants) excluded.

Data extraction

All abstracts and full-text articles were double screened by C.E.S. and one of the collaborators (S.J.E.) independently, using RAYYAN systematic review software. Discrepancies were discussed until an agreement was reached (k = 0.98), C.E.S. extracted data from full texts in Excel.

Recommendation development

Quality assessment and evidence grading

We conducted quality assessment using an adapted version of the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) system published by the International Late Effects from Childhood Cancer Guideline Harmonization Group.^29,31,32 We used the GRADE Profiler online tool³⁰ to generate tables summarizing these findings. C.E.S., S.J.E., and J.E.F. conducted the evidence grading collaboratively, through discussion of each potential guideline item and its related evidence, across each research question. Given the high degree of variability in ways in which publications reported on similar outcomes, we generated a narrative summary of findings tables. In keeping with the International Late Effects of Childhood Cancer Guidelines Harmonization Group version of the GRADE system, both clinical and scientific quality and impact of evidence were considered when determining the level and strength of evidence across each factor/guideline item.

Typically, the GRADE system accounts for the difference between an intervention or factor's desirable and undesirable effects (the larger the difference the stronger the recommendation), the overall quality of the evidence (with higher quality warranting stronger recommendation), and resources required to implement the factor/intervention (the more resources required, the weaker the recommendation).²⁹ However, given the heterogeneity of evidence we gathered, we generated a narrative summary of findings tables, and therefore focused on assigning the strength of a recommendation based on the overall quality of evidence, experience-based clinical relevance, and the resources required. Levels of evidence were assigned as follows: Level A—greater than three studies providing evidence and high clinical relevance of the factor/item based on expert opinion, Level B—less than three studies but high clinical relevance, or Level C—evidence solely stemming from existing guidelines or standards, or from only one study.³¹

For items with higher evidence quality (Level A), few resources required for implementation, and for which benefits greatly outweighed risks or burdens, we gave a strong recommendation. For items with moderate-quality evidence (Level B), we gave a strong, moderate, or weak recommendation depending on resources required for implementation and/or the extent to which benefits outweighed risks/burdens. For items with low-quality evidence (Level C evidence), recommendations were either moderate or weak depending on expert opinion. Weak recommendations based on Level C items were excluded from the final list of recommendations.

Evaluating the feasibility and acceptability of the guidelines

After finalization of the guidelines in March 2022 (Fig. 1), we obtained ethics approval for evaluation of the feasibility and acceptability of the recommendations in April 2022 (UNSW Human Research Ethics Committee approval number HC220401). We developed an online evaluation survey using Qualtrics survey software³³ and Slido for PowerPoint.³⁴ The survey was anonymous and did not collect any demographic or identifying information from participants. For open-ended questions, conventional content analysis was used to identify frequently occurring responses and tabulate the frequency of common responses (those provided by more than one individual).^35,36

We distributed a copy of the guidelines along with the evaluation survey via collaboration with Canteen, the national Australian youth cancer nongovernment organization, and the YCS, the national AYA oncology health care service for 15- to 25-year olds. First, Canteen shared the guidelines and evaluation survey via their newsletter to their subscribers. We also shared the guidelines and survey via presentation at a national Youth Cancer Service professional development webinar, as well as at a local level, via presentation to the clinicians of the Kids Cancer Centre, Sydney Children's Hospital.

Results

The literature search identified 2931 unique records, of which 79 full-texts remained included following screening (Fig. 1). We generated a narrative summary of findings table for each research question. Of the 79 full-texts included, types of texts included cross-sectional studies (N = 34),^3,37–68 prospective longitudinal studies (N = 8),^69–77 scale development and psychometric validation publications (N = 15),^78–90 guidelines/standards of care/recommendations (N = 10),^{10–12,21,91–96} care manuals (N = 2),^6,18 frameworks (N = 4),^17,19,97,98 an online news article (N = 1),⁹⁹ a position statement (N = 3),^95,100,101 a program report (N = 1),¹⁰² and a guide for patients (N = 2)^13,103 remained included following screening. Publications came primarily from the United States (N = 36),^{11–13,37,43,44,50,51,53–55,62,68,70,71,74,76,78,83–86,88,90,92,94,95,98–100,102–106} Australia (N = 14),^{6,10,17,23,38,47,52,56,58,79,89,91,97,101} and the United Kingdom (N = 6).^{18,39,48,75,81,107}

Recommendations

Aim 1: when should assessment of social well-being occur for AYAs diagnosed with cancer?

Evidence for time points at which social well-being should be assessed came from three sets of guidelines/standards of care and three research studies.^{6,10–12,69,72,74} The guidelines/standards highlighted the importance of assessing psychosocial well-being overall at diagnosis and at major transition points (such as completion of treatment).^10–12 The Canteen Australia Psychosocial Care Manual recommended further assessment time points of 2 weeks postdiagnosis, 6–8 weeks postdiagnosis, 1 year post-treatment, and 5 years post-treatment.⁶ Three prospective longitudinal studies provided evidence that AYAs' social well-being is compromised between 6 and 12 months postdiagnosis, suggesting the importance of monitoring social well-being during this time frame.^69,72,74 Two of these studies also found that social well-being remained compromised around 24 months postdiagnosis, with AYA cancer survivors reporting significantly poorer social well-being than population norms at this stage.^72,74

Recommendation 1

It is strongly recommended that screening for social well-being concerns be conducted regularly following diagnosis, including at diagnosis, 6–12 months postdiagnosis, and at major transition points. It is also moderately recommended that screening for social well-being concerns be conducted 24 months postdiagnosis, 1-year post-treatment, and 5 years post-treatment (Table 3).

Table 3.

Time Points for Assessment of Social Well-Being

Factor name	Level of evidence	Strength of recommendation
At diagnosis^6,11,12	B	Strong
2 Weeks postdiagnosis⁶	C	Weak
6–8 Weeks postdiagnosis⁶	C	Weak
8–10 Weeks postdiagnosis⁶	C	Weak
6–12 Months postdiagnosis^10,69,72,74	A	Strong
24 Months postdiagnosis^72,74	B	Moderate
1 Year post-treatment⁶	C	Moderate
5 Years post-treatment⁶	C	Moderate
Major transition points (e.g., between treatment phases, return to school or work)^6,10–12,18	A	Strong

Aim 2: what risk factors (clinical, demographic, and social) should be used to identify AYAs with cancer in need of surveillance of social well-being?

We identified nine studies and no guidelines/standards of care that provided evidence of demographic risk factors for poor social well-being.^{37,40,42,46,59,63,64,71,77} Five cross-sectional studies and one prospective longitudinal study reported a significant association between female sex and poor social well-being, or reported significant odds ratios that females were more likely than males to report poor social well-being.^{40,42,46,59,64,77} Four cross-sectional studies reported discordant associations between age at diagnosis and poor social well-being,^37,46,63,71 with two studies reporting associations between younger age at diagnosis and poor social well-being^46,71 and two other studies reporting associations between older age at diagnosis and poor social well-being.^37,63 Considering these discordant results, our expert working group suggested that age as a risk factor should focus on younger AYA ages 12–14 or older ages 26–39, which are developmentally still within adolescence and young adulthood but are outside of the age range covered by the Australian YCS (15–25).

Two sets of guidelines/standards of care^6,11,12 and 10 studies^{49,50,54,55,61,65,72,74,77,104} reported on clinical risk factors for poor social well-being. Three cross-sectional studies^54,55,104 and one prospective longitudinal study⁷² reported a significant association between poor physical functioning and poor social well-being. Three cross-sectional studies^49,55,104 and one prospective longitudinal study⁷⁷ reported significant association between fatigue and poor social well-being. One cross-sectional study⁵⁰ reported increased odds of experiencing poor social well-being if AYAs experience cognitive impairment from their cancer treatment, and two sets of guidelines/standards of care^6,11,12 reported cognitive impairment as a risk factor for poor social well-being. Clinical complications, such as graft-versus-host disease, were found to be associated with poor social well-being in one cross-sectional study,¹⁰⁴ while two cross-sectional studies identified an association between physically disfiguring diagnoses or treatments (e.g., limb amputation for sarcoma) and poor social well-being.^61,65

One set of guidelines/standards of care⁶ and six studies^{41,55,60,72,76,104} reported psychosocial risk factors for poor social well-being. One cross-sectional study¹⁰⁴ and one prospective longitudinal study⁷⁶ reported a significant association between increased psychological distress and poor social well-being, while one prospective longitudinal study found increased odds of poor social well-being among AYAs experiencing psychological distress compared with AYAs not experiencing that distress.⁷² Past or present mental health concerns were found to be associated with poor social well-being in two cross-sectional studies.^40,55 The Canteen Australia Psychosocial Care Manual also identified past or present mental health concerns as a risk factor for poor social well-being, in addition to past or present alcohol or substance abuse.⁶

Table 4 presents the summary of findings for risk factors for poor social well-being among AYAs with cancer.

Table 4.

Risk Factors for Poor Social Well-Being

Factor name	Level of evidence	Strength of recommendation
Demographic
Female sex^{40,42,46,59,64,77}	A	Strong
Age at diagnosis (AYAs outside of the Australian Youth Cancer Service age range who may miss out on age-appropriate supportive care: adolescents aged 12–14 or older, young adults aged 26–39)^37,46,63,71	A	Moderate
Immigrant to Australia and/or from culturally and linguistically diverse backgrounds)⁴⁶	C	Moderate
Clinical
Poor physical functioning/comorbid physical illness^54,55,72,104	A	Strong
Fatigue^49,55,77,104	A	Strong
Cognitive impairment^6,11,12,50	A	Strong
Clinical complications (e.g., graft-vs.-host disease or limb amputation)¹⁰⁴	B	Moderate
Diagnoses that involve physically disfiguring treatments/are likely to impact body image (e.g., sarcoma, head and neck cancer, breast cancer)^61,65	B	Moderate
Diagnoses with long treatment durations and likely to contribute to prolonged social isolation (e.g., acute lymphoblastic leukemia)⁷⁴	C	Moderate
Psychosocial factors
Psychological distress or poor psychological adjustment^72,76,104	A	Strong
Present or past mental health symptoms/diagnosis (e.g., depression or social anxiety)^6,40,55	A	Strong
Present or past alcohol or substance abuse⁶	C	Moderate
Other factors
Sedentary time (e.g., screen time)⁶⁰	C	Weak

Recommendation 2

It is strongly recommended that, at minimum, AYAs presenting with risk factors for poor social well-being are screened for social concerns on a frequent and regular basis. Key risk factors for poor social well-being include female sex, poor physical functioning, and symptoms of fatigue, cognitive impairment, psychological distress, or past/present mental health condition (e.g., depression). Additional risk factors moderately recommended for frequent and regular screening of social well-being include ages 12–14 or 26–39, those developing physical complications (such as graft-versus-host disease), those with a past/present alcohol/substance abuse problems, and those with diagnoses including sarcoma, head and neck cancer, breast cancer, and acute lymphoblastic leukemia screened for social well-being concerns frequently and regularly.

Aim 3: what validated measures should be used to assess social well-being among AYAs with cancer?

We identified 3 sets of guidelines/standards of care^6,10,18 and 36 research studies^{3,24,51,52,55,57,60,61,79,83–88,90,105,108–124} providing evidence for the use of both brief screening tools and comprehensive assessments to assess social well-being for AYAs with cancer. These tools and assessments have been validated in both AYAs, are publicly available, and are free for clinical use. The AYA Psycho-Oncology Screening Tool (AYA-POST) is the only brief measure of general social well-being (includes less than 10 items assessing social well-being) that has been codesigned by AYAs undergoing cancer treatment, AYA survivors who had completed cancer treatment and AYA oncology health care providers, and has been validated, particularly within Australia.^6,79,108

The HEADSSS Assessment is the only comprehensive interview/assessment of AYAs' social well-being we identified. Two sets of guidelines/standards of care recommended its use for AYAs with cancer^6,18 and it has been used extensively in the Australian health care context to assess psychosocial well-being in other AYA illness groups (Table 5).^123–125

Table 5.

Measures to Assess Social Well-Being in Adolescents and Young Adults with Cancer

Tool/assessment name	Level of evidence	Strength of recommendation	Number of items ^a	Aspect(s) of social well-being assessed	Recall period	Score interpretation	Where to access it	Cost
Brief measures
AYA-POST^6,10,79,108	A	Strong	7	Social problems	Past week	Distress thermometer: increased score = increased distress Problem checklist: more areas of concern checked = increased need for support	https://www.canteen.org.au/health-education/measures-manuals/aya-oncology-psychosocial-care-manual	Free
SPIN or Mini-SPIN^109–114	B	Moderate	SPIN: 17 Mini-SPIN: 3	Social anxiety	Past week	Clinically significant social anxiety indicated on the SPIN by a score of ≥19 for adolescents/21 for young adults, and on the Mini-SPIN by ≥6	Further information about access and use can be obtained from the author at mail@cd-risc.com	Free for clinical use Cost for research use
Comprehensive assessment
HEADSSS Assessment (AYA Psychosocial Care Manual Version)^{6,18,91,123–125}	B	Moderate	30	Home life, educated/employment, activities and peer relations, sexuality	Variable—both past and present well-being	N/A	https://www.canteen.org.au/health-education/measures-manuals/aya-oncology-psychosocial-care-manual	Free
Research measures
PedsQL^83,105,116	A	Strong	5	Social well-being as a domain of health-related quality of life	Past 4 weeks	Lower score = poorer social quality of life	https://eprovide.mapi-trust.org/instruments/pediatric-quality-of-life-inventory	Free for clinical use, cost for research use
QoL-CS^42,49,73,90	A	Strong	8	Social concerns: family, personal relationships, support, sexuality, employment, activities, social isolation, finances	Present moment	Lower score = poorer well-being	https://www.cityofhope.org/doc/1431763601572-qol-cs.pdf	Free
SF-36^{55,61,87,88,117–120}	A	Strong	2	Social well-being as a domain of health-related quality of life	Past 4 weeks	Lower score = poorer social quality of life	https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form/survey-instrument.html	Free
PROMIS^51,57,86	A	Strong	4	Social participation	Past week	Higher score = decreased functioning	https://aci.health.nsw.gov.au/__data/assets/pdf_file/0011/639821/PROMIS29-pain-adult-screening-guide-community-9March2021.pdf	Free
MMQL^84,85,122	A	Strong	6	Social well-being as a domain of health-related quality of life	Variable	Lower score = poorer social quality of life	https://eprovide.mapi-trust.org/instruments/minneapolis-manchester-quality-of-life-instrument-youth-form	Cost for clinical and research use
FACT-G^52,121	C	Weak	7	Social well-being as a domain of health-related quality of life	Past week	Lower score = poorer social quality of life	https://www.facit.org/measures/FACT-G	Free

Number of items specifically assessing social well-being.

AYA-POST, AYA Psycho-Oncology Screening Tool; FACT-G, Functional Assessment of Cancer Therapy-General; Mini-SPIN, Mini Social Phobia Inventory; MMQL, Minneapolis-Manchester Quality of Life Instrument; N/A, not applicable; PedsQL, Pediatric Quality of Life Inventory; PROMIS, Patient Reported Outcomes Measurement System; QoL-CS, Quality of Life-Cancer Survivors; SF-36, Short Form Health Survey-36; SPIN, Social Phobia Inventory.

Recommendation 3

It is strongly recommended that, in the context of clinical care, the AYA Psycho-Oncology Screening Tool (AYA-POST) be used for brief screening of problems with social well-being, and the Social Phobia Inventory (SPIN) or Mini Social Phobia Inventory (Mini-SPIN) be used for brief screening for social anxiety symptoms (Table 5). For young people reporting clinically significant concerns on either of these measures, the HEADSSS Assessment interview is strongly recommended to gain a more in-depth understanding of young people's concerns. A modified version of the HEADSSS Assessment can be found in the AYA Psychosocial Care Manual and is part of the manual's recommended care pathway.

There are also more comprehensive research measures available to assess young people's social well-being in the context of research studies. Research measures that are strongly recommended include the Pediatric Quality of Life Inventory (PedsQL), the Quality of Life-Cancer Survivors (QoL-CS), the Short Form Health Survey-36 (SF-36), the Patient Reported Outcomes Measurement System (PROMIS), and the Minneapolis-Manchester Quality of Life Instrument (MMQL) (Table 5).

Aim 4: what models of care/care pathways/interventions are effective to address social well-being concerns or deficits among AYAs with cancer?

There are key aspects of clinical care, interventions, and resources that can be followed to both prevent and address social well-being concerns in young people. At a service level, three existing guidelines/standards of care and three research studies provide evidence to suggest that having a multidisciplinary team that is educated on the developmental needs and preferences of AYAs is necessary to appropriately manage AYAs' social well-being.^{6,11,15,45,66,100} In addition, three sets of guidelines/standards of care and one research study highlight that it is advantageous for this team to meet regularly and for each AYA to be assigned a key clinician who is responsible for coordinating care for their social well-being.^6,10,15,17

At an individual level, eight guidelines/standards of care suggested that AYAs diagnosed with cancer should be provided information and support regarding connection to social life outside of hospital and treatment, opportunities for social interaction within hospital, guidance for engaging with education/work, and early referral to a psychologist coupled with regular psychological follow-up throughout treatment and survivorship (Table 6).^{6,10–13,17,18,96,99,103}

Table 6.

Models of Care/Care Pathways/Interventions for Addressing Social Well-Being Concerns

Factor name	Level of evidence	Strength of recommendation
Service level
Educate clinicians on the psychosocial and developmental needs and preferences of AYAs (more information on the developmental needs of young people with cancer can be found in the Australian Youth Cancer Framework: https://www.canteen.org.au/health-education/measures-manuals/australian-youth-cancer-framework).^66,100,106	A	Strong
Have regular meetings of the AYA psychosocial multidisciplinary team to facilitate coordinated and individually tailored planning of care.^6,10,15	B	Strong
Have a key clinician (the doctor, nurse, or allied health professional taking primary responsibility for monitoring the young person's social and emotional well-being) responsible for leading psychosocial care for an AYA, including development and execution of a care plan.^6,17	B	Strong
Provide equitable access to support, for example, through the use of technology.¹⁵	C	Moderate
Create flexible visiting hours for young people to have visits from friends and family when convenient and helpful for them, including daytime leave so young people can meet up with friends for a few hours outside of the hospital.¹⁸	C	Strong
Individual level
Information and support to provide
Keep the young person connected with life outside of their cancer treatment: try to limit time in hospital where possible so AYAs can maintain peer relationships, attend school or work, or participate in activities. Organize appointments or hospital stays to enable young people to attend school or social activities.^10–13,103	A	Strong
Provide opportunities for social interaction when in hospital:^11,12,96,99 Encourage young people to visit the in-hospital Youth Cancer Service lounge or Starlight Express Room, if available. Make available AYA-specific child life, recreational, and art/music therapy activities.	A	Strong
Provide guidance to AYAs for keeping up with and returning to education or work, with support from social work or a career counselor.^6,10,18	B	Strong
Provide information about psychosocial support options to family members and partners, along with information about possible psychosocial issues, so family members and partners can support young people and assist them in accessing supports.^10–12	B	Moderate
Give young people the opportunity to participate in goal-setting interventions and/or be linked in with a psychologist, social worker, or other allied health professional (e.g., child life therapist, health coach) who can help them to set and work toward goals that may have been disrupted by their diagnosis and treatment.^53,139	B	Moderate
Refer early to psychologists and/or social workers, and design and implement a psychosocial treatment plan in partnership with the young person, such that they can be linked with necessary supportive care and resources.^6,17	B	Moderate
Conduct regular follow-up to revaluate/adjust plans, depending on the young person's needs and/or circumstances.^6,17	B	Moderate
Empower young people and educate them on self-advocacy—one way to do this is to provide time and space in clinical consultations for young people to voice their questions and concerns. If needed, ask parents or partners to leave the room.^13,103	B	Moderate
Discussion topics
Discuss sexual and intimate well-being with AYAs, as well as fertility concerns.^52,65,73,98	A	Strong
Encourage young people to participate in peer support programs, to develop connections with other AYAs with cancer.^10–13,18	A	Strong
Acknowledge and discuss body image concerns, which can be a significant source of distress, social anxiety, and/or social isolation for a young person.¹⁰	C	Strong

Recommendation 4

To prevent social well-being concerns and promote positive social well-being, it is strongly recommended that quality age-appropriate clinical care, at both the individual and service levels (as detailed in Table 6), is provided. High-quality, age-appropriate clinical care components will differ across settings and according to health system structural differences and resourcing constraints; Table 6 summarizes key components drawn from specific models of care, care pathways, or interventions at both the service and individual levels internationally, with the strength of available evidence connected with each.

A summary of these recommendations is outlined in Figure 3.

FIG. 3.

Guidelines for caring for the social well-being of AYAs with cancer in Australia. *AYAs, adolescents and young adults; CALD, culturally and linguistically diverse; CNS, central nervous system; GVHD, graft-versus-host disease; HEADSSS, Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment.

Evaluation of the guidelines

A total of 23 AYA oncology health care professionals completed the evaluation survey. The guidelines were rated highly acceptable, with 65% of health care professionals reporting they were somewhat or very likely to implement the guidelines in their own work/clinical practice. However, several barriers and concerns related to the feasibility of this implementation were described, including limited time and private spaces to conduct in-depth assessments (Table 7).

Table 7.

Feasibility of Implementation: Barriers and Concerns

Question	Response options	N (%)
(1) What do you think would be required to be able to implement these guidelines?	Training for yourself and/or your team members	23 (100)
	Assessment tools in online, electronic format	15 (65)
	Assessment tools built into electronic medical record system	21 (91)
	Additional resources (e.g., time, funding)—please describe	12 (52)
(2) Considering the guidelines pathway and recommendations, do you perceive any barriers specific to your place of work, to being able to implement these recommendations?	Open ended	Time to implement (N = 8, 35%)Getting screening time points, tools, and scoring systems added to electronic medical records (N = 4, 17%)Lack of allied health/psychosocial staff, limited knowledge of nonallied health staff regarding psychosocial screening (N = 6, 26%)Privacy and space to conduct more in-depth conversations and assessments (N = 5, 22%)
(3) How difficult do you think it would be for AYA cancer care providers across Australia to be able to follow these guidelines?	Very difficult	0 (0)
	Somewhat difficult	0 (0)
	Neither easy nor difficult	4 (17)
	Somewhat easy	19 (86)
	Very easy	0 (0)

Participants were able to endorse multiple response options per question, therefore percentages of responses to each question can total more than 100%.

Discussion

We provide evidence-based and expert-based recommendations for caring for the social well-being of young with cancer in Australia, aged 13–40 years. These guidelines were developed following the Australian NHMRC Guidelines, involving an expert working group, systematic literature review, and gold standard evidence grading using an adapted version of the GRADEPro system.^29–31,126 These guidelines aim to build on the existing psychosocial support services provided through the Australian Youth Cancer Framework and in accordance with the Australian AYA Oncology Psychosocial Care Manual.²⁰

To date, social well-being remains a significant area of unmet need for young people with cancer in Australia, and young Australians prioritize improvements in care for their social well-being.^{6,22,23,127–129} Although the Youth Cancer Framework has enabled significant strides in the psychosocial care provided to young people with cancer across Australia, there continue to be gaps experienced by young people who are not able to access quality age-appropriate care for their social well-being due to the geographic location, limited psychosocial services available at certain hospitals, and/or being treated in pediatric or adult environments where some health care professionals may not be aware of the specific psychosocial needs of this age group.^8,15,52,108

To optimize resources available and overcome any limitations imposed by lack of access to AYA-specialized cancer care professionals, the goal of these guidelines is to empower all members of the oncology health care teams, as well as community general practitioners, to participate in caring for young people's social well-being.

Evaluation of these guidelines indicates that while the recommendations are acceptable, barriers to their feasibility that we identified are consistent with findings from studies on international implementation of patient-reported outcome measures in the oncology care setting. International studies on implementation of patient-reported outcome measures have identified feasibility limitations including the time required to conduct the screening and follow-up care, clinicians' limited knowledge about how and when to conduct social well-being screening, and the need for any screening time points, tools, and follow-up procedures to be integrated into the electronic medical records.¹³⁰ Further research trialing implementation of these guidelines may be useful to identify ways to overcome barriers to their feasibility and subsequently improve the uptake of the guidelines' recommendations by health care professionals.

Limitations

These guidelines are limited by the reliance on existing guidelines and standards as well as poorer quality cross-sectional studies, resulting in the predominance of Level B evidence and moderate recommendations based on expert opinion. In addition, although there have been significant advances in the understanding of the psychosocial impact of cancer treatment on AYAs, there were very few interventions available specifically focused on social well-being. In addition, many existing studies and guidelines/standards do not specify optimal methods for caring for young people's social well-being, with many broadly discussing “psychosocial well-being,” but focusing more on distress and emotional well-being.

Lastly, the sample size involved in the evaluation of these guidelines was small and we did not collect demographic or identifying details from participants, and therefore, it is not possible to know whether participants are representative of Australian AYA cancer health care providers. We were also unable to determine the response rate for the evaluation survey as the recruitment for the survey involved both word of mouth and email distribution, so we cannot be certain of the number of professionals who received and were eligible to complete the survey. Despite these limitations, these guidelines provide the first set of evidence-based recommendations for caring for the social well-being of AYAs with cancer in Australia.

Clinical implications

It is widely acknowledged that clinical guidelines alone are insufficient for creating true clinical practice change.^131,132 These guidelines provide a critical first step toward change by clearly outlining what optimal care for the social well-being of young people with cancer should comprise, regardless of the young person's cancer diagnosis, treatment type, or treatment center.

Effective guidelines are those that improve both the care process and outcomes of patients receiving care.^131,132 Implementation of patient-reported outcome measures, such as screening for social well-being concerns, may facilitate increased clinician awareness of changes in a patient's psychosocial status, shared decision-making, and doctor–patient communication.^133,134 There is also some evidence to suggest that exposure to and uptake of psychosocial supportive care and resources can contribute to improved self-efficacy, quality of life, and psychosocial well-being.^135,136 However, methods of delivering psychosocial supportive care may impact whether or not that care contributes to positive patient outcomes. There is currently a lack of consensus around optimal methods for delivering psychosocial care pathways such as that recommended in the guidelines, with discordance across results from technology and face-to-face delivered care/interventions.^137,138

Therefore, future implementation studies of these guidelines should also identify how Australian AYAs prefer for this care pathway to be delivered, particularly in regard to technology-based versus face-to-face delivery methods.

Conclusions

Therefore, the future success of these guidelines for caring for the social well-being of AYAs with cancer in Australia will require working closely with AYA oncology health care professionals and cancer centers to ensure that appropriate training can be provided to all members of the care team. The recommended care pathway outlined in the guidelines will also need to be adapted to overcome site-specific feasibility barriers, such as staffing, time, space, and skill-related needs, and to ensure that assessment of social well-being facilitates positive change to patient care. If successful implementation of these guidelines can be achieved, they may facilitate protection and promotion of optimal long-term social well-being for young Australians with cancer.

Footnotes

Acknowledgment

This work was included in the dissertation of C.E.S., submitted to the University of New South Wales, in fulfillment of the degree of Doctor of Philosophy, awarded February 23, 2023.

Authors' Contributions

C.E.S.: conceptualization, investigation, formal analysis, project administration, and writing: original draft and editing; U.M.S.-D., J.E.F., T.N.T., and A.C.A.: supervision, investigation, and writing: review; S.J.E., Az.A., T.L., F.M., C.E.W., S.L., E.B., K.L., A.R., Ad.A., T.K., N.H., S.T., P.P., and F.M.D.: conceptualization, investigation, supervision, and writing: review.

Author Disclosure Statement

The authors have no conflicts of interest to declare.

Funding Information

C.E.S. is supported by a Research Training Program Scholarship from the Australian Government, a PhD Top-Up Scholarship from the Kids Cancer Alliance, and a PhD Top-Up Scholarship from the Kids to Adults (K2A) Clinical Academic Group, which is part of Maridulu Budyari Gumal, The Sydney Partnership for Health, Education, Research & Enterprise. J.E.F. is supported by the Kids Cancer Project. C.E.W. is supported by the NHMRC (APP2008300). U.M.S.-D. is supported by the Cancer Institute of NSW (ID: 2020/ECF1163) and the NHMRC (APP1111800).

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