Unmet information and support needs in newly diagnosed thyroid cancer: comparison of adolescents/young adults (AYA) and older patients

Purpose

Thyroid cancer (TC) is the most common cancer in adolescent and young adult (AYA) females ages 15–29 and second for 30–39. However, little research details the unmet support needs and survivorship concerns of TC patients.

Methods

TC patients ≥15 years of age at diagnosis completed online surveys through the thyroid cancer survivor (ThyCa) website. Survivors rated the importance of medical/physical (M/Ph), practical, and emotional/psychological (E/Ps) realms of information during diagnosis and treatment, as well as recollection of receiving such information. Comparison was made between AYAs and those ≥40 years at diagnosis.

Results

Of 1,113 respondents, most were female (88.3 %), part Caucasian (92.3 %), and treated in academic or private urban settings. More than 80 % of patients rated receiving information about most M/Ph matters very or extremely important and >70 % for most E/Ps concerns. However, few recalled receiving any information besides the surrounding surgery and radioiodine (RAI). AYAs were more often female, non-white, Hispanic, married with children, living with a spouse/significant other, and unemployed at diagnosis (p?<?0.001). Significant differences were noted in the importance AYAs placed on many M/Ph and practical matters, but not E/Ps ones. AYAs less commonly recalled receiving information on recurrence (p?=?0.038), long-term side effects (p?=?0.024), coping strategies (p?=?0.049), support groups (p?=?0.019), opportunities for meeting other survivors (p?=?0.009), or help with treatment decisions (p?=?0.036); they reported receiving less overall care for E/Ps concerns (p?=?0.016).

Conclusion

TC patients place high importance on receiving information regarding most aspects of TC treatment and survivorship care. However, these information needs and survivorship concerns are largely unmet, especially among AYAs.

Implications for Cancer Survivors

Participating in multidisciplinary and survivorship-focused TC care may alleviate some of these unmet information and support needs.     

Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review

Purpose

A cancer diagnosis during adolescence or young adulthood (AYA; defined as ages 15–39) generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted. Past research highlights that AYAs’ experiences and psychosocial outcomes are different, and more research and attention is needed. We aimed to identify and synthesize literature regarding psychosocial outcomes, unique needs, and existing psychosocial interventions pertaining to individuals diagnosed with cancer exclusively during AYA, and to highlight areas for future research.

Methods

A systematic literature search was conducted using MEDLINE (via PubMed), EMBASE, Cochrane, Web of Science, and PsycINFO (via OVID). Grey literature was searched using key term variations and combinations. Overall, 15,301 records were assessed by two independent reviewers, with 38 studies meeting inclusion criteria.

Results

Data synthesis of the 38 articles was organized by four main themes based on quality of life and survivorship: physical well-being (7 studies), psychological well-being (8 studies), social well-being (9 studies), and survivorship care (14 studies). The paucity of studies for such broad inclusion criteria highlights that this population is often combined or subsumed under other age groups, missing needs unique to these AYAs.

Conclusions

AYA cancer survivors’ experiences are nuanced, with interacting variables contributing to post-treatment outcomes. AYAs require age-appropriate and flexible care, informational needs and treatment-related education that foster autonomy for long-term survivorship, as well as improved follow-up care and psychological outcomes.

Implications for Cancer Survivors

By incorporating these findings into practice, the informational and unmet needs of AYAs can be addressed effectively. Education and programming is lacking specific and general subject matter specific to AYAs, incorporating ranging needs at different treatment stages.

     

Cancer in adolescents and young adults in Japan: epidemiology and cancer strategy

According to national cancer registry data in Japan, approximately 20,000 adolescents and young adults (AYAs, age 15–39 years) are newly diagnosed with cancer each year. Improvements in treatment and care for AYAs with cancer are included in the Phase Three Basic Plan to Promote Cancer Control Programs in Japan. This article reviews current cancer incidence and survival for AYAs with cancer in Japan using population-based cancer registry data. Mortality data through 2019 from the Vital Statistics of Japan are also described. Encouragingly, the 5-year survival probability for AYA cancers has continued to improve, in parallel with childhood cancers, and the mortality rate has decreased. There has been increasing attention to these vulnerable patients and improved partnerships and collaboration between adult and pediatric oncology; however, obstacles to the care of this population still exist at multiple levels. These obstacles relate to specific areas: research efforts and enrollment in clinical trials on AYA malignancies, AYA-specific psychosocial support such as education, financial support, and oncofertility care, and cancer care systems. It is important for Japanese oncologists, health care providers, and health policy makers to recognize that the AYA population remains vulnerable and still have unmet needs.

     

Care and support needs of children and young people with cancer and their parents

The importance of psychosocial support services for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision. This paper provides an overview of psychosocial support children and their families in the UK receive during and after treatment. It reports the results of a postal survey of 303 families, within which parents and children identified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a range of areas, including medical information and support from nurses and social workers. However, areas of unmet need were also highlighted, especially age appropriate facilities, emotional support and information in different formats. Although British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service, this paper demonstrates that there is still a need to develop psychosocial support services and work towards recently established guidelines in order to ensure that families receive flexible but equitable packages of care and support, wherever treatment is received.     

Reimagining care for adolescent and young adult cancer programs: Moving with the times

Literature regarding the development of adolescent and young adult (AYA) cancer programs has been dominantly informed by pediatric centers and practitioners. However, the majority of young adults are seen and treated at adult cancer centers, in which cancer volumes afford the development of innovative supportive care services. Although the supportive care services in adult cancer centers are helpful to AYAs, some of the most prominent and distinct issues faced by AYAs are not adequately addressed through these services alone. This article describes how the AYA Program at Princess Margaret Cancer Centre has collaborated with existing supportive care services in addition to supplying its own unique services to meet the comprehensive needs of AYAs in the domains of: symptom management (sexuality and fatigue), behavior modification (return to work and exercise), and health services (advanced cancer and survivorship). These collaborations are augmented by patient education interventions and timely referrals. The objective of this article was to assist other centers in expanding existing services to address the needs of AYA patients with cancer. Cancer 2016;122:1038–1046. © 2016 American Cancer Society     

Context for understanding psychosocial outcomes and behavior among adolescents and young adults with cancer

Across all age groups, cancer affects relationships with family and friends; challenges one's sense of independence; disrupts goals, aspirations, and achievements; alters one's body image and integrity; and poses existential challenges about the world and one's place in it. When diagnosed with cancer, adolescents and young adults (AYAs) in their 20s and 30s face unique challenges compared with younger children and older adults. Understanding how cancer-related challenges manifest needs and desires for psychological and social support services throughout a continuum of care may help clinicians improve cost-effective quality care and patient outcomes. This article provides a context for understanding the experiences of AYAs with cancer and highlights key domains of psychosocial need in this population.     

Impaired social functioning in adolescent and young adult sarcoma survivors: Prevalence and risk factors

Background

Sarcomas account for almost 11% of all cancers in adolescents and young adults (AYAs; 18–39 years). AYAs are increasingly recognized as a distinct oncological age group with its own psychosocial challenges and biological characteristics. Social functioning has been shown to be one of the most severely affected domains of health-related quality of life in AYA cancer survivors. This study aims to identify AYA sarcoma survivors with impaired social functioning (ISF) and determine clinical and psychosocial factors associated with ISF.

Methods

AYAs from the population-based cross-sectional sarcoma survivorship study (SURVSARC) were included (n = 176). ISF was determined according to the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 social functioning scale, and age- and sex-matched norm data were used as reference.

Results

The median time since diagnosis was 6.2 years (range, 1.8–11.2). More than one-quarter (28%) of AYA sarcoma survivors experienced ISF. Older age, higher tumor stage, comorbidities, lower experienced social support, uncertainty in relationships, feeling less attractive, sexual inactivity, unemployment, and financial difficulties were associated with ISF. In a multivariable analysis, unemployment (OR, 3.719; 95% CI, 1.261–10.967) and having to make lifestyle changes because of financial problems caused by one's physical condition or medical treatment (OR, 3.394; 95% CI, 1.118–10.300) were associated with ISF; better experienced social support was associated with non-ISF (OR, 0.739; 95% CI, 0.570–0.957).

Conclusion

More than one-quarter of AYA sarcoma survivors experience ISF long after diagnosis. These results emphasize the importance of follow-up care that is not only disease-oriented but also focuses on the psychological and social domains.

Plain Language Summary

• Sarcomas account for almost 11% of all cancers in adolescents and young adults (AYAs; 18–39 years). The AYA group is increasingly recognized as a distinct oncological age group with its own psychosocial challenges and biological characteristics.
• Social functioning has been shown to be severely affected in AYA cancer survivors.
• A population-based questionnaire study to identify AYA sarcoma survivors with impaired social functioning (ISF) and determine factors associated with ISF was conducted. More than one-quarter of AYA sarcoma survivors experience ISF long after diagnosis. These results emphasize the importance of follow-up care that is not only disease-orientated but also focuses on the psychological and social domains.

     

Psychosocial care of adolescent and young adult patients with cancer and survivors

The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group--the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.     

Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Psychosocial care for cancer: a framework to guide practice, and actionable recommendations for Ontario

Objectives

We set out to create a psychosocial oncology care framework and a set of relevant recommendations that can be used to

• improve the quality of comprehensive cancer care for Ontario patients and their families.
• meet the psychosocial health care needs of cancer patients and their families at both the provider and system levels.

Data Sources and Methods

The adapte process and the practice guideline development cycle were used to adapt the 10 recommendations from the 2008 U.S. Institute of Medicine standard Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs into the psychosocial oncology care framework. In addition, the evidence contained in the original document was used, in combination with the expertise of the working group, to create a set of actionable recommendations. Refinement after formal external review was conducted.

Data Extraction and Synthesis

The new framework consists of 8 defining domains. Of those 8 domains, 7 were adapted from recommendations in the source document; 1 new domain, to raise awareness about the need for psychosocial support of cancer patients and their families, was added. To ensure high-quality psychosocial care and services, 31 actionable recommendations were created. The document was submitted to an external review process. More than 70% of practitioners rated the quality of the advice document as high and reported that they would recommend its use.

Conclusions

This advice document advocates for a multidisciplinary approach to cancer care in response to the distress experienced by cancer patients and their families. The recommendations will be useful in future to measure performance, quality of practice, and access to psychosocial services.     

The impact of supportive nursing care on the needs of men with prostate cancer: a study across seven European countries

Background:

Prostate cancer is for many men a chronic disease with a long life expectancy after treatment. The impact of prostate cancer therapy on men has been well defined, however, explanation of the consequences of cancer treatment has not been modelled against the wider variables of long-term health-care provision. The aim of this study was to explore the parameters of unmet supportive care needs in men with prostate cancer in relation to the experience of nursing care.

Methods:

A survey was conducted among a volunteer sample of 1001 men with prostate cancer living in seven European countries.

Results:

At the time of the survey, 81% of the men had some unmet supportive care needs including psychological, sexual and health system and information needs. Logistic regression indicated that lack of post-treatment nursing care significantly predicted unmet need. Critically, men''s contact with nurses and/or receipt of advice and support from nurses, for several different aspects of nursing care significantly had an impact on men''s outcomes.

Conclusion:

Unmet need is related not only to disease and treatment factors but is also associated with the supportive care men received. Imperative to improving men''s treatment outcomes is to also consider the access to nursing and the components of supportive care provided, especially after therapy.     

The feasibility of psychosocial screening for adolescent and young adult brain tumor survivors: the value of self-report

Purpose

Psychosocial screening is increasingly applied to childhood cancer survivors generally, but less so with pediatric brain tumor survivors despite their psychosocial risks. This study examined the utility and acceptability of psychological screening in pediatric brain tumor survivors.

Methods

Eighty-four adolescents (age 12?C18) completed the Beck Youth Inventory-II and 79 young adults (age 19?C30) completed the Brief Symptom Inventory-18. Their scores were compared to clinician ratings on the global assessment of functioning following clinical interviews.

Results

Eighty-four percent of participants completed measures in <30?min, 90?% reported no associated distress, and 98?% found measures easy to understand. Using established cut-off scores, 14 adolescents (17?%) and 21 young adults (27?%) were identified as clinical cases by self-report. Agreement with clinician report was generally low (kappa?=?.19, p?=?.077, adolescents; kappa?=?.34, p?=?.003, young adults), with clinicians tending to rate a higher proportion of both groups as having significant distress (24?% in adolescents; 32?% in young adults). Low self-concept scores in adolescents and deficits in social and vocational functioning in young adults contributed significantly to the discrepancies between self-report and clinician ratings.

Conclusions

Pediatric brain tumor survivors are capable of completing self-report psychological measures without distress or burden. Self-report can be a valuable tool in the assessment of pediatric brain tumor survivors, particularly in adolescents, who may provide information not revealed in a clinical interview. However, self-report, should not be used as a ??stand-alone?? assessment because important areas of functioning may be minimized in survivors?? reports.

Implications for cancer survivors

Utilizing self-report for psychosocial screening of adolescent and young adult brain tumor survivors may enhance clinical care and allow for better identification of survivors in need of psychological services.     

The met and unmet health care needs of adult survivors of childhood central nervous system tumors: a double-informant, population-based study

BACKGROUND:

The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

METHODS:

In this population‐based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3.

RESULTS:

Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor‐reported and parent proxy‐reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory.

CONCLUSIONS:

Findings based on reliable double‐informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long‐term follow‐up care were identified. Addressing these issues adequately in clinical follow‐up extending into adulthood would likely improve the quality of comprehensive care for this patient group. Cancer 2011;. © 2011 American Cancer Society     

Racial, socioeconomic, and demographic disparities in access to fertility preservation in young women diagnosed with cancer

BACKGROUND:

This study seeks to examine the relation between sociodemographic characteristics and the utilization of fertility preservation services in reproductive age women diagnosed with cancer.

METHODS:

A total of 1041 women diagnosed with cancer between the ages of 18 and 40 years responded to a retrospective survey on demographic information and reproductive health history. Five cancer types were included: leukemia, Hodgkin disease, non‐Hodgkin lymphoma, breast cancer, and gastrointestinal cancer. Nine hundred eighteen women reported treatment with potential to affect fertility (chemotherapy, pelvic radiation, pelvic surgery, or bone marrow transplant). Student t test, linear regression, and multivariate logistic regression were used where appropriate to determine the relation between sociodemographic characteristics and the odds of using fertility preservation services.

RESULTS:

Sixty‐one percent of women were counseled on the risk of cancer treatment to fertility by the oncology team. Overall, 4% of women pursued fertility preservation. In multivariate analysis, women who had not attained a bachelor's degree (odds ratio [OR], 0.7; 95% confidence interval [CI], 0.5‐0.9) were less likely to be counseled. Trends also suggested possible disparities in access to fertility preservation with age older than 35 years (OR, 0.1; 95% CI, 0.0‐1.4) or previous children (OR, 0.3; 95% CI, 0.1‐1.1) at diagnosis. Disparities in access to fertility preservation based on ethnicity and sexual orientation were also observed.

CONCLUSIONS:

Sociodemographic health disparities likely affect access to fertility preservation services. Although awareness of fertility preservation has improved in the past decade, an unmet need remains for reproductive health counseling and fertility preservation in reproductive age women diagnosed with cancer. Cancer 2012. © 2012 American Cancer Society.     

Positive and negative psychosocial impact of being diagnosed with cancer as an adolescent or young adult

BACKGROUND:

The objective of this study was to explore the psychosocial impact of cancer on newly diagnosed adolescent and young adult (AYA) cancer patients.

METHODS:

This was a population‐based, multicenter study of 523 newly diagnosed AYA survivors (ages 15‐39 years) of germ cell cancer (n = 204), non‐Hodgkin lymphoma (n = 131), Hodgkin lymphoma (n = 142), acute lymphocytic leukemia (n = 21), or sarcoma (n = 25) from 7 National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) registries. Age at diagnosis was categorized into 3 groups (ages 15‐20 years, 21‐29 years, and 30‐39 years).

RESULTS:

Respondents (43% response rate), on average (±standard deviation), were aged 29 = 6.7 years, and most patients (80.1%) were not receiving treatment at the time the completed the survey. With modest differences between the age groups, the most prevalent areas of life impacted in a negative way were financial, body image, control over life, work plans, relationship with spouse/significant other, and plans for having children. Endorsement of positive life impact items also was evident across the 3 age groups, particularly with regard to relationships, future plans/goals, and health competence.

CONCLUSIONS:

The current results indicated that there will be future need for interventions targeting financial assistance, body image issues, relationships, and helping AYAs to attain their education objectives. Cancer 2012. © 2012 American Cancer Society.     

Unmet psychosocial needs of Pennsylvanians with cancer: 1986-2005

BACKGROUND: The purpose of the current study was to identify unmet psychosocial needs of cancer survivors, understand the distribution of needs across subgroups, and compare unmet needs in 2005 with those identified by Houts et al. in 1986. METHODS: Using a sequential mixed methods design, qualitative interviews were conducted with 32 cancer survivors or family members to identify the psychosocial needs of people from the time of cancer diagnosis through survivorship. These data were used to modify a needs assessment that was mailed to a stratified random sample of survivors obtained from the Pennsylvania Cancer Registry. RESULTS: A total of 614 survivors returned usable questionnaires. Nearly two-thirds of respondents reported experiencing at least 1 unmet psychosocial need, particularly emotional, physical, and treatment-related needs. It is likely that unmet needs in insurance, employment, information, and home care increased during the 20-year interval between surveys. Demographics associated with increased unmet need included later stage of disease at the time of diagnosis, younger age, more comorbidities, and lower income. CONCLUSIONS: Unmet psychosocial need remains high despite 20 years of effort to address psychosocial issues. This may be due to a mismatch between needs and services. Unmet need may be related to access issues, a lack of awareness of resources, "new" needs that have arisen in a changing healthcare climate, and patient preferences for types of service. Cancer treatment staff should be especially alert for psychosocial problems in younger individuals with an additional illness burden.     

Young adult cancer survivors and work: a systematic review

Context

Sixty-three percent of cancer survivors continue to work, or return to work after treatment. Among this population, work ability and challenges encountered in the workplace by young adult cancer survivors have not been well established.

Purpose

The purposes of the study are to describe what is currently known about work-related issues for young adult cancer survivors diagnosed between ages 15 and 39, to identify gaps in the research literature, and to suggest interventions or improvements in work processes and occupational settings.

Methods

A narrative review of articles using PubMed, CINAHL, and PsychInfo was conducted without date limitations. Search phrases included young adult cancer survivors, long-term cancer survivors, young adults affected by cancer, further combined with key terms employment, work, and occupationally active. Inclusion criteria for publications were young adult cancer survivors initially diagnosed between the ages of 15 and 39, data about work or employment was presented, and articles written in English.

Results

Twenty-three publications met the inclusion criteria. Work-related issues included the potential for reduced work productivity from cancer-changed physical and cognitive functional ability that affected income, and resulted in distress. Coping style, support systems, and changing perspectives about work and life in general were also influential on career decisions among young adult cancer survivors.

Conclusions

More research is needed to study interventions to better manage health changes in young adult cancer survivors within the context of the workplace. Since financial hardship has been shown to be especially high among young cancer survivors, employment is essential to ensure payment of cancer-associated costs and continued medical care.

Implications for Cancer Survivors

While young adult cancer survivors may initially grapple with cancer-related physical and psychosocial changes that impact work productivity or influence choice of occupation, employment appears to enhance overall quality of life.

     

Barriers to follow-up care among survivors of adolescent and young adult cancer

Purpose

Though the need for risk-based follow-up care for survivors of adolescent and young adult (AYA) cancer has been documented, survivors often report forgoing recommended care due to cost. We sought to understand whether additional barriers to follow-up care exist for AYA survivors.

Methods

We recruited survivors who were diagnosed with cancer between the ages of 15 and 39 using the Utah Cancer Registry (UCR). Overall, 28 survivors participated in 6 focus groups held between March and May 2015 in Salt Lake City and St. George, UT. Focus group discussions focused on the reasons survivors may or may not attend recommended medical visits after completing therapy.

Results

Survivors reported myriad barriers to follow-up medical visits, including lack of clear provider recommendation, fear of recurrent cancer diagnosis, wishing to move on with life, competing life responsibilities due to work and children, and not perceiving the need for a visit due to lack of symptoms.

Conclusions

Though cost likely plays a major part in follow-up care adherence for survivors of AYA cancer, in our focus groups, participants indicated there were many other psychosocial and logistic barriers to care. Such factors play an important role in the day-to-day lives of survivors and are critical in medical decision-making.

Implications for cancer survivors

Several factors impede follow-up care adherence for survivors of AYA cancer that are amenable to interventions, including clearer provider recommendations, flexible appointment times, and childcare availability in clinics.