Unmet Needs of Adult Survivors of Childhood Cancers: Associations with Developmental Stage at Diagnosis,Cognitive Impairment,and Time from Diagnosis

Abstract

Purpose:

Adult survivors of childhood cancers (ASCCs) are a unique and growing population. Because these individuals were diagnosed in childhood, their developmental stage at diagnosis may influence medical sequelae and perception of their cancer diagnosis and potentially result in long-term complications and challenges. Our aim was to determine how developmental stage, time since diagnosis, and cognitive impairment relate to Canadian ASCC distress and unmet needs.

Methods:

Canadian ASCCs aged 19–77 years (N = 115) diagnosed between ages 0 and 5 (n = 25), 6 and 12 (n = 22), or 13 and 18 (n = 68) completed demographic, neurocognitive self-report, depression, and anxiety and unmet needs questionnaires.

Results:

The developmental stage predicted distress, β = −0.29, p = 0.01. Survivors diagnosed in middle childhood reported significantly more distress than those diagnosed in adolescence. Shorter time since diagnosis predicted greater psychosocial needs, β = −0.24, p = 0.05, and greater distress, β = −0.22, p = 0.05. Greater memory impairment predicted higher need across outcomes, β = −0.36–0.61, p < 0.05. In adjusted analyses for unmet needs, endorsement of cancer affecting education and/or work importantly altered outcomes.

Conclusion:

Our results indicate that greater self-reported memory impairment increases childhood cancer survivors' care needs. We additionally suggest that supportive care interventions might best target those reporting work or education interruption due to cancer. Identification of ASCCs who report work/school interruptions may provide a quick screen for health providers to assess possible need for intervention. ASCCs still experience unmet needs long into survivorship.

Introduction

While medical advances have produced an increasing population of adult survivors of childhood cancers (ASCCs),¹ late- and long-term effects are frequently observed.² Pediatric cancer treatments can impair neurological function, complicate maturation,³ and lower quality of life (QOL).^4,5 Furthermore, ASCCs often lack knowledge about their diagnosis and treatment,⁶ are uncertain about their fertility status,⁷ and neglect follow-up visits.⁸ Many face academic difficulties,⁹ psychosexual problems,¹⁰ and lower rates of marriage.¹¹ It is critical to identify supports that address ASCCs' physical, psychological, and practical concerns (i.e., unmet needs) to reduce negative long-term impact.

Many ASCCs will experience disruptions to relationships, identity, and/or independence due to their diagnosis.¹² Research and theory in developmental psychology suggest themes specific to each developmental stage that may interact with a cancer diagnosis, resulting in increased future needs.¹³ The challenges ASCCs face may be contingent on the developmental context of their cancer diagnosis and treatment through mechanisms such as how they experience these disruptions and cope with treatment neurotoxicities that impact developing brains. A cancer diagnosis during adolescence is related to greater relationship difficulties,¹⁴ lower school completion,¹⁵ delayed psychosexual development, and lower psychosocial and health-related QOL.^4,5 These are understandable given adolescents' developmental focus on autonomy, relationships, self-esteem, and sexuality.^14,16 By comparison, younger age at diagnosis may lead to lower educational attainment,¹⁵ higher unemployment,¹⁷ greater disability,¹⁸ lower marriage rates,¹¹ and more care-related health needs.^1,19 Young children may have difficulty comprehending the immediate and long-term gravity of their diagnosis²⁰ and may lag behind in educational and social development due to absenteeism. Particularly for children aged 0–5 years, cancer treatment may impede normal parent–child attachment^14,16 and interfere with neurological development, causing lifelong deficits.^9,21 Our study adopts this developmental perspective to better understand the unmet needs of ASCCs.

Time since diagnosis and cognitive impairment may also affect distress and unmet needs. In cancer survivors diagnosed as adults, many aspects of distress decrease with time.²² The same cannot be said for ASCCs as symptoms can relate to either increasing or decreasing time since diagnosis.⁹ Cognitive impairments are also common in ASCCs, especially in children treated for brain tumors, acute lymphoblastic leukemia, and head/neck tumors.²³ Cognitive impairments, such as learning and memory problems, often increase emotional distress.²⁴ We therefore incorporated time since diagnosis and cognitive impairment as possible predictors of unmet needs and distress.

A recent study from the Childhood Cancer Survivor Study (CCSS) found that ASCCs experience a range of unmet needs²⁵ and identified risk factors accompanying greater unmet needs: female sex, lower socioeconomic status (SES), and children diagnosed between 5 and 14 years of age. In a Swiss study, ASCCs reported that they either did not receive information on treatment, follow-up, or late effects or they only received this information orally, despite desiring written and personalized details.²⁶ This lack of information led to greater psychological distress and lower QOL. It is clear therefore that ASCCs experience unique unmet needs that need to be addressed.

Although recent studies on ASCCs' unmet needs exist, most focus on healthcare systems quite different from Canada's systems. Of these studies, small sample sizes limit generalizability, except for the American and Canadian CCSS cohort.²⁷ The current study aims to identify ASCCs' unmet needs and distress in a larger Canadian sample at a later follow-up than previous studies²⁷ and to examine risk factors, including developmental stage at diagnosis, time since diagnosis, and cognitive impairment, to better understand needs.

Objectives

Our primary objective was identifying the unmet needs that ASCCs face in Canada and to explore the number, level, and types of unmet needs ASCCs experienced by developmental stage at diagnosis. Our second aim was examining how the developmental stage at diagnosis, time since diagnosis, and cognitive functioning interacted to impact distress and unmet needs. Based on prior studies,^4,17 we hypothesized that ASCCs diagnosed at younger ages would experience greater practical unmet needs, while those diagnosed at older ages would experience greater psychosocial unmet needs. Because time since diagnosis may increase or mitigate unmet needs²⁸ and cognitive impairment may increase difficulties,^24,29 we included these and all two-way interactions when testing hypotheses.

Methods

Participants

The study received approval from our university's Research Ethics Board. Our cancer registry mailed invitations to all ASCCs in Alberta, Canada, who were 19 years or older with histologically confirmed childhood diagnoses. We excluded those with in situ, nonmelanoma skin cancers, opting out of research contact, or deceased.

Among 1562 eligible ASCCs, the registry had the wrong address or the patient was deceased for 563 and 3 others refused (unknown reasons), reducing the overall eligible population to 996. Of 159 responding ASCCs, 117 ASCCs completed surveys (73.6%), although 2 were excluded (age of diagnosis >18). We examined generalizability using aggregated registry data to find that our sample did not differ from nonresponders by cancer type, χ²(3,1041) = 3.24, p = 0.36, or age, t(1039) = 1.18, p = 0.24, but significantly more women than men completed surveys, χ²(1,1041) = 7.55, p = 0.01. The 115 ASCCs included in these analyses were, on average, aged 35 years and were 23 years postdiagnosis (Table 1). The most common cancer types were lymphoma and reticuloendothelial systems (29.6%) and leukemia (13.0%). Participants reported aggressive cumulative treatments over their lifetimes (72.2% surgery, 65.2% chemotherapy, and 63.5% radiation). Recurrences occurred in 9% and new cancers in 21%.

Table 1.

Demographic, Medical, and Study Variables for Adult Survivors of Childhood Cancer (n = 115)

	Early childhood (n = 25)		Middle childhood (n = 22)		Adolescence (n = 68)			Total (N = 115)
Measures	N	M (SD) or%	N	M (SD) or%	N	M (SD) or%	p	N	M (SD) or%
DASS-21	25	12.80 (15.87)	22	18.91 (21.25)	68	12.82 (13.72)	0.273	115	13.98 (15.90)
SUNS
Practical	25	0.32 (0.63)	22	0.55 (0.80)	68	0.37 (0.71)	0.223	115	0.39 (0.71)
Psychosocial	25	0.44 (0.82)	22	0.82 (1.10)	68	0.71 (0.98)	0.257	115	0.67 (0.97)
CCSS-NCQ memory	25	6.24 (2.33)	22	6.50 (2.41)	68	6.69 (2.53)	0.732	115	6.56 (2.45)
Demographic/medical
Gender							0.033^a
Female	14	56.0	8	36.4	46	67.6		68	59.1
Age/median	25	29.29 (8.98)/25.74	22	34.90 (10.29)/33.23	68	37.35 (12.93)/33.13	0.015^a	115	35.13 (12.05)/32.30
Age range		20.05–52.88		20.61–53.58		20.73–77.97			20.05–77.97
Ethnicity
White	23	92.0	20	90.9	59	86.8	0.849	102	88.7
Minority/mixed	2	8.0	2	9.1	9	13.2		13	11.3
Education							0.153
<High school	1	4.0	4	18.2	5	7.4		10	8.7
High school degree	8	32.0	6	27.3	24	35.3		38	33.0
Trade school	4	16.0	4	18.2	4	5.9		12	10.4
College	7	28.0	1	4.5	12	17.6		20	17.4
University	5	20.0	7	31.8	23	33.8		35	30.4
Marital status							0.365
Single	14	56.0	15	68.2	32	47.8		61	53.5
Married	11	44.0	6	27.3	30	44.8		47	41.2
Divorced	0	0.0	1	4.5	5	7.5		6	5.3
Employment status							0.303
Full-time	12	48.0	12	54.5	40	58.8		64	55.7
Part-time	3	12.0	5	22.7	17	25.0		25	21.7
Student	5	20.0	2	9.1	3	4.4		10	8.7
Not working	4	16.0	1	4.5	5	7.4		10	8.7
Not working-cancer	1	4.0	1	4.5	2	2.9		4	3.5
Not working-disability	0	0.0	1	4.5	1	1.5		2	1.7
Education/work-Yes	6	24.0%	15	68.2%	53	77.9%	0.000^a	74	64.3%
Age at diagnosis	25	2.60 (1.43)	22	8.62 (2.12)	68	15.72 (1.86)	0.000^a	115	11.51 (5.73)
Time since diag./Median	25	26.69 (8.99)/24.49	22	26.27 (11.13)/25.65	68	21.04 (13.22)/16.89	0.061	115	23.27 (12.24)/20.95
Time since diag. Range		16.70–50.77		8.79–45.90		3.68–62.68			3.68–62.68
Cancer type							0.006^a
Lymphoma and Reticul.	3	12.0	6	27.3	25	36.8		34	29.6
Leukemia	5	20.0	2	9.1	8	11.8		15	13.0
Bone/Connect. Tissue	2	8.0	4	18.2	8	11.8		14	12.2
CNS	2	8.0	5	22.7	5	7.4		12	10.4
Thyroid	1	4.0	2	9.1	6	8.8		9	7.8
Testicular	2	8.0	0	0.0	4	5.9		6	5.2
Epithelial neoplasm	0	0.0	0	0.0	6	8.8		6	5.2
Wilms	3	12.0	1	4.5	0	0.0		4	3.5
Neuroblastoma	3	12.0	0	0.0	0	0.0		3	2.6
Head and neck	0	0.0	0	0.0	3	4.4		3	2.6
Gynecologic	1	4.0	0	0.0	2	2.9		3	2.6
Renal tumor	1	4.0	1	4.5	1	1.5		3	2.6
Other	1	8.0	1	4.5	0	0.0		3	2.6
Treatment history
Surgery	16	64.0	18	81.8	49	72.1	0.385	83	72.2
Chemotherapy	16	64.0	14	63.6	45	66.2	1.00	75	65.2
Radiation	12	48.0	19	86.4	42	61.8	0.018^a	73	63.5
Hormone	1	4.0	0	0.0	5	7.4	0.620	6	5.2
Bone marrow	1	4.0	2	9.1	2	2.9	0.375	5	4.3
Stem cell	0	0.0	1	4.5	2	2.9	0.769	3	2.6
Antibody	1	4.0	0	0.0	1	1.5	0.652	2	1.7
None	0	0.0	0	0.0	1	1.5	1.00	1	0.9
Recurrence							0.547
Yes	1	4.0	3	13.6	6	8.8		10	8.7
No	22	88.0	16	72.7	58	85.3		96	83.5
Not Sure	2	8.0	3	13.6	4	5.9
New cancer							0.001^a
Yes	0	0.0	4	18.2	20	29.4		24	20.9
No	23	92.0	17	77.3	48	70.6		88	76.5
Not sure	2	8.0	1	4.5	0	0.0

p < 0.05.

DASS, Depression Anxiety Stress Scale-Short Form; SUNS, Survivor Unmet Needs Survey; CCSS-NCQ, Childhood Cancer Survivor Study Neurocognitive Questionnaire.

Procedure

ASCCs contacted through mail-outs and up to four phone calls consented and participated online (82.6%, n = 95) or through hard copy.

Measures

Independent variables

Demographics and medical history

Participants reported demographics and medical history (Table 1). We created three age-at-diagnosis groups: early childhood (0–5), middle childhood (6–12), and adolescence (13–18).

CCSS Neurocognitive Questionnaire

The CCSS Neurocognitive Questionnaire (CCSS-NCQ),³⁰ a 25-item Likert-type scale, assesses neurocognitive function (higher scores, higher difficulty) over four dimensions: Task Efficiency, α = 0.91; Emotional Regulation, α = 0.84; Organization, α = 0.80; and Memory, α = 0.89. Subscales were highly correlated, Spearman r = 0.31–0.71, so we only used the Memory subscale.

Dependent variables

Depression Anxiety Stress Scale-Short Form

The Depression Anxiety Stress Scale-Short Form (DASS-21), a short form of DASS,³¹ contains three 7-item Likert-type scales (higher scores, higher distress): depression, α = 0.89, anxiety, α = 0.61, and stress, α = 0.85. High correlations between subscales, Spearman r = 0.47–0.60, led to our using a total score (α = 0.90) that is a reliable and valid measure of general distress.³²

The Survivor Unmet Needs Survey

The Survivor Unmet Needs Survey (SUNS) measures cancer survivors' unmet needs.³³ It has 89 Likert-type items (higher scores, higher need; 0 = No unmet need–4 = Very high unmet need) and five subscales: Emotional Impact (α = 0.99), Access/Continuity of Care (α = 0.94), Coping and Sharing (α = 0.97), Finances (α = 0.94), and Information (α = 0.92). We created the Practical Unmet Needs Scale (α = 0.97) from Information, Financial, and Access subscales, Spearman r = 0.52–0.57, and a Psychosocial Unmet Needs Scale (α = 0.99) from the Coping and Emotional subscales, Spearman r = 0.77.

Statistical analysis

Primary analysis

We first examined which items ASCCs endorsed most frequently to better understand their psychosocial and practical unmet needs in Canada.

We examined the normality of distributions and collinearity among variables. Parametric tests were appropriate for both dependent variables (DVs) and independent variables (IVs; developmental stage, time since diagnosis, and CCSS-NCQ memory score). To test hypotheses, we used multiple regressions for each of the DVs with IVs (and all two-way interactions) centered and entered simultaneously.

Sensitivity analyses

For significant IVs, we conducted sensitivity analyses to test whether demographic or medical variables could explain results. If inclusion of these variables resulted in a reduction of significance of IVs, then it is possible that our IVs were proxy to these other variables. Only demographic or medical variables that demonstrated significant correlations with both the IV and the DV were investigated.³⁴ For continuous or binary variables, we tested associations using Spearman correlations, and for categorical variables, we used one-way ANOVAs. We included any variables that met these criteria in adjusted multiple regressions.

Results

Description of scores

No cutoffs exist for the DASS-21 total score, although depression (M = 4.78, SD = 7.64), anxiety (M = 3.15, SD = 4.50), and stress (M = 6.05, SD = 7.32) were within normal clinical cutoffs³¹; 4.3% of our participants scored moderate or above clinical cutoffs on depression, 11.3% on anxiety, and 15.7% on stress.

On the CCSS-NCQ Memory subscale, our sample demonstrated significantly more memory problems (M = 6.56, SD = 2.45) compared with a healthy group of ASCCs (M = 5.80, SD = 1.85; t(801) = 3.89, p < 0.001), but less than a group of survivors treated with high-dose cranial radiation to the frontal areas of their brains (M = 7.60, SD = 2.47; t(360) = 3.74, p < 0.001).³⁰

Unfortunately, no norms exist for the SUNS with ASCCs. On average, our participants reported a relatively low number of practical unmet needs (M = 0.39, SD = 0.71, range = 0.00–3.00) and psychosocial unmet needs (M = 0.67, SD = 0.97, range = 0.00–4.00). On all of these measures, we found no differences in scores among developmental age at diagnosis groups (Table 1).

Primary analyses

Unmet needs

Overall, 45.3% of participants reported at least one High or Very High unmet need in the last month, with 15.4% not reporting any. The most frequently endorsed High to Very High unmet needs were, “Finding someone to talk to who understands” (15.6%), “Worry about earning money” (14.8%), and “Coping with having a bad memory or lack of focus” (13.9%).

We explored unmet needs endorsed for each developmental stage (Table 2). For early childhood, middle childhood, and adolescent participants, respectively, 56.0%, 86.4%, and 82.4% endorsed at least one practical unmet need and 52.0%, 77.3%, and 82.4% at least one psychosocial unmet need.

Table 2.

Multiple Regressions Predicting Distress, Practical, and Psychosocial Unmet Needs Experienced by ASCCs (n = 115)

					95.0% Confidence interval for B
Variable	B	β	t	p	Lower bound	Upper bound
DASS-21 total score^a
Time since diagnosis	−0.28	−0.22	−2.00	0.049	−0.56	−0.00
Memory score	3.94	0.61	6.43	0.000	2.72	5.15
Time since diagnosis × memory score	0.05	0.09	1.04	0.300	−0.04	0.14
Early childhood	−5.92	−0.16	−1.46	0.148	−13.96	2.13
Early childhood × memory score	−1.90	−0.12	−1.11	0.269	−5.29	1.49
Early childhood × time since diagnosis	0.15	0.05	0.37	0.711	−0.65	0.95
Adolescence	−9.07	−0.29	−2.77	0.007	−15.55	−2.58
Adolescence × memory score	−1.73	−0.15	−1.29	0.200	−4.38	0.93
Adolescence × time since diagnosis	0.35	0.09	1.04	0.300	−0.04	0.14
Practical unmet needs^b
Time since diagnosis	0.00	0.02	0.13	0.894	−0.01	0.02
Memory score	0.11	0.36	3.33	0.001	0.04	0.17
Time since diagnosis × memory score	0.00	0.06	0.61	0.547	−0.00	0.01
Early childhood	−0.24	−0.14	−1.13	0.263	−0.65	0.18
Early childhood × memory score	0.02	0.03	0.24	0.808	−0.15	0.20
Early childhood × time since diagnosis	0.01	0.06	0.46	0.644	−0.03	0.05
Adolescence	−0.21	−0.15	−1.27	0.209	−0.55	0.12
Adolescence × memory score	0.05	0.10	0.75	0.453	−0.09	0.18
Adolescence × time since diagnosis	0.00	0.04	0.24	0.812	−0.03	0.03
Psychosocial unmet needs^c
Time since diagnosis	−0.02	0.24	−2.02	0.046	−0.04	0.00
Memory score	0.18	0.45	4.25	0.000	0.09	0.26
Time since diagnosis × memory score	0.00	−0.01	−0.09	0.930	−0.01	0.01
Early childhood	−0.41	−0.18	−1.50	0.137	−0.96	0.13
Early childhood × memory score	−0.12	−0.13	−1.04	0.299	−0.35	0.11
Early childhood × time since diagnosis	0.02	0.11	0.80	0.428	−0.03	0.08
Adolescence	−0.28	−0.14	−1.25	0.213	−0.72	0.16
Adolescence × memory score	−0.07	−0.10	−0.75	0.458	−0.25	0.11
Adolescence × time since diagnosis	0.02	0.12	0.84	0.403	−0.02	0.05

DASS total score R² = 0.38, F(9,104) = 7.16, p < 0.001.

Practical unmet needs R² = 0.19, F(9,105) = 2.76, p = 0.006.

Psychosocial unmet needs R² = 0.25, F(9,105) = 3.86, p < 0.001.

ASCCs, adult survivors of childhood cancer.

Regressions

Depression Anxiety Stress Scale-Short Form

Shorter time since diagnosis (β = −0.22, p = 0.05), greater memory problems (β = 0.61, p < 0.001), and developmental stage (i.e., a diagnosis in middle childhood predicted increased DASS-21 scores compared with adolescence) significantly predicted greater DASS-21 total score. No significant differences emerged between middle childhood and early childhood groups (Table 3 and Fig. 1).

FIG. 1.

Significant predictors of distress (DASS-21), developmental stage by memory score. DASS, Depression Anxiety Stress Scale-Short Form.

Table 3.

Top 3 Unmet Needs Endorsed by ASCCs by Developmental Stage (n = 115)

	Early childhood	Middle childhood	Adolescence
Practical unmet needs	Knowing which sources of information to trust (36.0%)	Finding information about the signs of cancer and when I should be concerned (50.0%)	Dealing with fears about cancer spreading (45.6%)
	Finding what type of financial assistance is available and how to obtain it (32%)	Finding what type of financial assistance is available and how to obtain it (50.0%)	Dealing with feelings of worry (anxiety) between follow-ups (41.2%).
	Paying nonmedical costs related to my cancer (travel, accommodation, special foods, etc.) (32%)	Having access to care from other health specialists (dieticians, physiotherapists, occupational therapists) (50.0%)	Dealing with not feeling sure that the cancer has gone (39.7%)
Psychosocial unmet needs	Dealing with feeling depressed (36.0%)	Finding someone to talk to who understands and has been through a similar experience (59.1%)	Dealing with feeling tired (47.1%)
	Dealing with feeling depressed (36.0%)		Telling others how I was feeling emotionally (44.1%)
	Dealing with feeling stressed (36.0%).	Dealing with feeling depressed (54.5%)	Dealing with feeling stressed (44.1%)
	Finding someone to talk to who understands and has been through a similar experience (32.0%).	Dealing with feeling stressed (54.5%)
	Dealing with feeling tired (32.0%)
	Dealing with feeling worried (anxious) (32.0%)
	Dealing with worry about the emotional well-being of my family (32.0%)

Practical unmet needs

Greater memory problems (β = 0.36, p = 0.001) significantly predicted greater SUNS practical unmet needs. No significant developmental-stage or time-since-diagnosis effects emerged (Table 3).

Psychosocial unmet needs

Greater memory problems (β = 0.45, p < 0.001) and shorter time since diagnosis (β = −0.24, p = 0.05) significantly predicted greater psychosocial unmet needs. No significant developmental-stage effects emerged (Table 3 and Fig. 2).

FIG. 2.

Significant predictors of psychosocial unmet needs (SUNS), time since diagnosis by memory score. SUNS, the Survivor Unmet Needs Survey.

Sensitivity analysis

Age, gender, ethnicity, cancer type (CNS cancer vs. non-CNS cancer), recurrence, radiation treatment, and second cancers did not correlate with either IVs or DVs and therefore were not considered proxy variables. However, the binary variable “did your cancer experience directly affect your education and/or work?” significantly correlated both with IVs (memory score, time since diagnosis, and developmental stage) and DVs (practical and psychosocial unmet needs, but not DASS total score). Therefore, we adjusted unmet needs' equations to test whether results were proxy to this variable.

Adjusted regressions

Endorsing education/work disruptions significantly predicted greater practical unmet needs, β = 0.26, p = 0.04, but greater memory problems, β = 0.21, p = 0.11, and was no longer significant, adjusted R² = 0.14, F(14,100) = 2.27, p = 0.01. Memory was proxy to the underlying report of cancer affecting education/work.

With education/work in the equation, greater memory problems, β = 0.26, p = 0.03, and shorter time since diagnosis, β = −0.24, p = 0.05, still significantly predicted greater psychosocial unmet needs, adjusted R² = 0.24, F(14,100) = 3.57, p < 0.001. Endorsing education/work significantly predicted greater psychosocial unmet needs, β = 0.28, p = 0.02, with a significant education/work by memory interaction, β = 0.26, p = 0.03 (Fig. 3). In this study, results were not proxy; the interaction of education/work and memory score was an additional predictor.

FIG. 3.

After adjustment, significant predictors of psychosocial unmet needs (SUNS), interaction of memory score and cancer affecting education/work.

Discussion

We found that many ASCCs in Canada report High and Very High unmet needs, especially about finding someone who understands their experiences, worrying about money, and memory problems. The middle childhood group experienced the most unmet needs. We examined whether developmental stage at diagnosis, time since diagnosis, memory impairment, and their interactions predicted levels of distress and practical and psychosocial unmet needs and found that greater self-reported memory impairment predicted higher need across all outcomes. Developmental stage significantly affected distress, with those diagnosed in middle childhood reporting greater distress than those in adolescence. Shorter time since diagnosis significantly predicted greater psychosocial unmet needs and greater distress. In adjusted analyses for practical and psychosocial unmet needs, we found that cancer disrupting education and/or work importantly altered outcomes. Memory impairment was not as important in predicting unmet practical needs as cancer impacting education and/or work. For psychosocial unmet needs, education/work and memory significantly interacted to predict higher needs, while the significance of shorter time from diagnosis remained unchanged. Those who endorsed disruption of their education/work had a linear increase in psychosocial unmet needs for each increment in memory impairment (Fig. 3) that was absent for those not endorsing this fact. These results suggest that meeting survivors' supportive care needs may require personalizing interventions.

Our participants rated Coping and Sharing, Financial, and Emotional unmet needs highly. These differed from those reported in studies with adult cancer survivors,³³ where the top unmet needs were, “Fears about cancer spreading,” “Being told I had cancer,” and “Not feeling sure that the cancer has gone.” Sample dissimilarities in years post-treatment may explain these differences as Campbell et al.'s rates were 1–5 and ours were 3.68–62.68. It is also possible that a diagnosis in childhood versus adulthood may account for differences. Adolescent and young adult survivors of cancer in Canada report a need to talk to peers with similar experiences and a need for psychological and emotional support,³⁵ similar to our results, suggesting that ASCCs have unique needs.³⁶

In examining predictors of needs and distress, our analysis suggested that memory problems were particularly important. Previous studies indicate that treatment-related cognitive impairment can negatively impact health-related QOL,^37–39 emotional distress,²⁴ educational/work attainment,⁴⁰ and relationship success.^41,42 Our study supports these results by showing that greater self-reported memory impairment increases survivors' care needs. Supportive care interventions for ASCCs might best target those reporting cancer-related education or career interruptions. This single factor may provide a quick screen for clinicians to assess the need for intervention.

We found minimal support for associations between developmental stage at diagnosis and unmet needs; however, those diagnosed in middle childhood compared with adolescence experienced greater distress. Previous research documents mixed results; some studies have found an association between greater distress and younger age at diagnosis,^1,11 while others found the opposite.^4,5,14 However, these studies typically examined age at diagnosis as a continuous variable, which may mask the distress associated with a middle childhood diagnosis. In addition, treatment toxicities may be worse for younger children's brain and social development,^9,21 leading to more serious late effects.

Complicating this picture, patients treated in older eras likely received more toxic treatments. In the 1960s, fewer than 50% of children lived 5 years post-treatment,⁴³ although now the 5-year survival rate is >80%⁴⁴ due to changes such as reduced dose radiation and lower dose chemotherapy.^45,46 Despite temporal changes in therapeutic exposures in childhood cancer treatments, self-reported health status is not significantly improved by treatment era.⁴⁷ Similarly, we found that a shorter time since diagnosis was associated with more distress, suggesting that more support is required especially in the years immediately post-treatment. While past studies typically focus on a specific time since diagnosis,⁴⁸ our mean follow-up time of 23 years postdiagnosis represents a noteworthy time period and offers implications for clinicians seeking to provide relevant support to all ASCCs regardless of time from diagnosis.

In our study, 24.0% of those diagnosed in early childhood reported that cancer affected education/work, compared with higher levels in middle childhood and adolescence (68.2% and 77.9%, respectively). The middle childhood group received significantly more radiation (86.4%) compared with adolescence and early childhood (61.8% and 48.0%), and a higher percentage did not finish high school (18.2% vs. 7.4% and 4.0%). These findings may partially explain the greater distress in our middle childhood group, as research documents dose–response radiation effects on brain development and education.³⁷ However, sensitivity analyses found it unnecessary to adjust for radiation, nor was radiation significantly correlated with outcomes (Spearman r = 0.05–0.14), so this alone cannot fully explain our results. Future research is needed to replicate findings with regard to distress in different developmental stages at diagnosis.

Qualitative exploration of the commonly endorsed unmet needs at each stage shows some possible developmental differences (Table 2). Those diagnosed in early childhood endorsed financial, trust, and psychosocial unmet needs; those in middle childhood endorsed information, financial, specialist access, and psychosocial unmet needs; and those in adolescence endorsed psychosocial unmet needs. These can be construed to reflect developmental themes. In early childhood, given children's dependency on caregivers, they may not comprehend their disease or anticipate long-term complications,^20,49 and thus dependencies for financial and information needs may extend into adulthood. In middle childhood, treatment may threaten normative social and academic achievement due to absenteeism,²⁰ leading to greater sensitivity and isolation compared with their peers continuing into survivorship. In adolescence, peer relationships are particularly important,¹⁴ and disruptions to the development of social skills and relationships may manifest as psychosocial distress and needs into adulthood.

Limitations, Implications, and Future Directions

Our sample size, while larger than other Canadian samples, limited our generalizability. It is possible that we were unable to detect more complex interaction effects due to sample size. In addition, given the nature of our sampling procedure, it is possible that self-selection to participate in this study may bias results. Response rates were lower than anticipated due to the transient nature of young adults and ethical limitations restricting our use of the most up-to-date patient address databases. We included survivors regardless of cancer type and time from diagnosis, giving a broad picture of survivor needs, but limiting understanding of specific cancers, treatments, and post-treatment periods. Additionally, given the significant time since diagnosis in our sample, it is possible that unmeasured more recent life events may relate to their distress and unmet needs.

The findings from this study provide several suggestions for clinical interventions. First, asking current ASCCs whether their education/work was affected by cancer may be a quick screen to identify those who may need additional support. Second, possible interventions could consider what normative developmental tasks are for the child's age at treatment and, as much as possible, integrate support to maintain the child's ability to progress through those stages. For school-age children, maintaining schoolwork and active and meaningful peer contact is a developmental priority, and recent interventions, including social media and online interactions with peers, may be helpful.^50,51 Third, after treatment is complete, there is often little attention to survivorship needs. And of support that is available, most does not focus on vocational training that may importantly decrease distress and unmet needs.

In summary, this was one of the first studies to relate developmental stage at diagnosis to unmet needs in Canada, finding limited evidence of these relationships. Surprisingly, longer time since diagnosis meant lower needs. Participants endorsed more psychosocial unmet needs related to emotions and social identity than practical unmet needs relating to healthcare experiences. Future studies could qualitatively examine the experiences of ASCCs and would benefit from more effective tracking of long-term survivors. Asking if cancer affected ASCCs' education/work may allow clinicians to quickly assess needs. In addition, this study provides insight into enhancing preventive psychosocial interventions during childhood and coping interventions into survivorship.

Footnotes

Acknowledgments

This research was supported by a grant from the Enbridge Research Chair in Psychosocial Oncology and Alberta Cancer Foundation to the last author. The authors thank Dr. Linda E. Carlson for her feedback and input on the manuscript. The authors thank the ASCCs who participated in this study.

Author Disclosure Statement

No competing financial interests exist.

References

Hovén

, Lannering

, Gustafsson

, Boman

. The met and unmet health care needs of adult survivors of childhood central nervous system tumors: A double-informant, population-based study. Cancer. 2011; 117(18):4294–303.

Hudson

, Gurney

, Nathan

, et al. Age-dependent changes in health status in the childhood cancer survivor cohort. J Clin Oncol. 2015; 33(5):479–91.

Stam

, Hartman

, Deurloo

, et al. Young adult patients with a history of pediatric disease: Impact on course of life and transition into adulthood. J Adolesc Health. 2006; 39(1):4–13.

Kazak

, DeRosa

, Schwartz

, et al. Psychological outcomes and health beliefs in adolescent and young adult survivors of childhood cancer and controls. J Clin Oncol. 2010; 28(12):2002–7.

Zebrack

, Chesler

. Quality of life in childhood cancer survivors. Psychooncology. 2002; 11(2):132–41.

Zebrack

, Eshelman

, Hudson

, et al. Health care for childhood cancer survivors. Cancer. 2004; 100(4):843–50.

Zebrack

, Casillas

, Nohr

, et al. Fertility issues for young adult survivors of childhood cancer. Psychooncology. 2004; 13(10):689–99.

Shaw

, Pogany

, Speechley

, et al. Use of health care services by survivors of childhood and adolescent cancer in canada. Cancer. 2006; 106(8):1829–37.

Zeltzer

, Recklitis

, Buchbinder

, et al. Psychological status in childhood cancer survivors: A report from the childhood cancer survivor study. J Clin Oncol. 2009; 27(14):2396–404.

10.

Bober

, Zhou

, Chen

, et al. Sexual function in childhood cancer survivors: A report from Project REACH. J Sex Med. 2013; 10:2084–93.

11.

Frobisher

, Lancashire

, Winter

, et al. Long-term population-based marriage rates among adult survivors of childhood cancer in britain. Int J Cancer. 2007; 121(4):846–55.

12.

Dixon-Woods

, Young

, Henry

. Rethinking experience of childhood cancer: A multidisciplinary approach to childhood cancer. Berkshire, England: Open University Press; 2005.

13.

Shute

, Slee

. Child development: Theories and critical perspectives. New York, NY: Routledge; 2015.

14.

Thompson

, Marsland

, Marshal

, Tersak

. Romantic relationships of emerging adult survivors of childhood cancer. Psychooncology. 2009; 18(7):767–74.

15.

Holmqvist

, Wiebe

, Hjorth

, et al. Young age at diagnosis is a risk factor for negative late socio-economic effects after acute lymphoblastic leukemia in childhood. Pediatr Blood Cancer. 2010; 55(4):698–707.

16.

Apter

, Farbstein

, Yaniv

. Psychiatric aspects of pediatric cancer. Child Adoles Psychiatr Clin N Am. 2003; 12(3):473–92.

17.

Pang

JWY

, Friedman

, Whitton

, et al. Employment status among adult survivors in the childhood cancer survivor study. Pediatr Blood Cancer. 2008; 50(1):104–10.

18.

Coniglio

, Blackman

. Developmental outcome of childhood leukemia. Topics Early Child Spec Educ. 1995; 15(1):19–31.

19.

Kupst

, Natta

, Richardson

, et al. Family coping with pediatric leukemia: Ten years after treatment. J Pediatr Psychol. 1995; 20(5):601–17.

20.

Eiser

. Growing up with a chronic disease: The impact on children and their families. London: Jessica Kingsley Publishers; 1993.

21.

Rey-Casserly

, Meadows

. Developmental perspectives on optimizing educational and vocational outcomes in child and adult survivors of cancer. Dev Disabil Res Rev. 2008; 14(3):243–50.

22.

Carlson

, Waller

, Groff

, et al. What goes up does not always come down: Patterns of distress, physical and psychosocial morbidity in people with cancer over a one year period. Psychooncology. 2013; 22(1):168–76.

23.

Castellino

, Ullrich

, Whelen

, Lange

. Developing interventions for cancer-related cognitive dysfunction in childhood cancer survivors. J Natl Cancer Inst. 2014; 106.

24.

Oancea

, Brinkman

, Ness

, et al. Emotional distress among adult survivors of childhood cancer. J Cancer Surviv. 2014; 8(2):293–303.

25.

Cox

, Zhu

, Ojha

, et al. The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies. J Cancer Surviv. 2016; 10:743–58.

26.

Gianinazzi

, Essig

, Rueegg

, et al. Information provision and information needs in adult survivors of childhood cancer. Pediatr Blood Cancer. 2014; 61:312–8.

27.

Galán

, de la Vega

, Miró

. Needs of adolescents and young adults after cancer treatment: A systematic review. Eur J Cancer Care. 2016:1–14.

28.

Millar

, Patterson

, Desille

. Emerging adulthood and cancer: How unmet needs vary with time-since-treatment. Palliat Support Care. 2010; 8(2):151–8.

29.

Moore

, Hockenberry

, Krull

. Cancer-related cognitive changes in children, adolescents and adult survivors of childhood cancers. Semin Oncol Nurs. 2013; 29(4):248–59.

30.

Krull

, Zeltzer

, Gioia

, et al. Reliability and validity of the childhood cancer survivor study neurocognitive questionnaire. Cancer. 2008; 113(8):2188–97.

31.

Lovibond

, Lovibond

. Manual for the depression anxiety stress scales (DASS). Sydney: Psychology Foundation Monograph; 1993.

32.

Osman

, Wong

, Bagge

, et al. The depression anxiety stress scales-21 (DASS-21): Further examination of dimensions, scale reliability, and correlates. J Clin Psychol. 2012; 68:1322–38.

33.

Campbell

, Sanson-Fisher

, Turner

, et al. Psychometric properties of cancer survivors' unmet needs survey. Support Care Cancer. 2011; 19(2):221–30.

34.

Kraemer

, Stice

, Kazdin

, et al. How do risk factors work together? Mediators, moderators, and independent, overlapping, and proxy risk factors. Am J Psychiatry. 2001; 158:848–56.

35.

Tsangaris

, Johnson

, Taylor

, et al. Identifying the supportive care needs of adolescent and young adult survivors of cancer: A qualitative analysis and systematic literature review. Support Care Cancer. 2014; 22:947–59.

36.

Canadian Partnership Against Cancer (CPAC).. Adolescents Young Adults with Cancer. Toronto: Canadian Partnership Against Cancer, 2017.

37.

Armstrong

, Krull

, Jain

, et al. Region-specific radiotherapy and neuropsychological outcomes in adult survivors of childhood CNS malignancies. Neuro Oncol. 2010; 12(11):1173–86.

38.

Huang

, Krull

, Brinkman

, et al. Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: A report from the st jude lifetime cohort study. J Clin Oncol. 2013; 31(33):4242–51.

39.

Krull

, Annett

, Pan

, et al. Neurocognitive functioning and health-related behaviours in adult survivors of childhood cancer: A report from the childhood cancer survivor study. Eur J Cancer. 2011; 47(9):1380–8.

40.

Kadan-Lottick

, Zeltzer

, Liu

, et al. Neurocognitive functioning in adult survivors of childhood non-central nervous system cancers. J Natl Cancer Inst. 2010; 102(12):881–93

41.

Ellenberg

, Armstrong

, Robison

, et al. Neurocognitive status in long-term survivors of childhood CNS malignancies: A report from the childhood cancer survivor study. Neuropsychology. 2009; 23(6):705–17.

42.

Janson

, Krull

, Kadan-Lottick

, et al. Predictors of marriage and divorce in adult survivors of childhood cancers: A report from the childhood cancer survivor study. Cancer Epidemiol Biomarkers Prev. 2009; 18(10):2626.

43.

Reis

, Pollack

, Young

JLJ

. Cancer patient survival: Surveillance, epidemiology, and end results program. J Natl Cancer Inst. 1983:1973–79.

44.

NCI.. SEER Cancer Statistics Review, 1975–2003. Bethesda, MD: National Cancer Institute; 2015.

45.

Hudson

, Neglia

, Woods

, et al. Lessons from the past: Opportunities to improve childhood cancer survivor care through outcomes investigations of historical therapeutic approaches for paediatric hematological malignancies. Pediatr Blood Cancer. 2012; 58(334–343):334.

46.

Green

, Kun

, Mathay

, et al. Relevance of historical therapeutic approaches to the contemporary treatment of paediatric solid tumors. Pediatr Blood Cancer. 2013; 60:1083–1094.

47.

Ness

, Hudson

, Jones

, et al. Effect of Temporal Changes in Therapeutic Exposure on Self-reported Health Status in Childhood Cancer Survivors. Ann Int Med. 2017; 166(2):89–98.

48.

Zebrack

, Corbett

, Embry

, et al. Psychologial distress and unsatisfied need for psychosocial support in adolescent and young adult patients during the first year following diagnosis. Psychooncology. 2014; 23:1267–75.

49.

Bibace

, Walsh

. Development of children's concepts of illness. Pediatrics. 1980; 66(6):912–7.

50.

Berntsen

, Babic

. Cherry: Mobile application for children with cancer. Stud Health Technol Inform. 2013; 192:1168.

51.

Fasciano

, Souza

, Braun

, Trevino

. An innovative website in the United States for meeting the emotional and supportive care needs of young adults with cancer. J Adolescent Young Adult Oncol. 2015; 4(1):44–9.

52.

Richter

, Koehler

, Friedrich

, et al. Psychosocial interventions for adolescents and young adult cancer patients: A systematic review and meta-analysis. Crit Rev Oncol Hematol. 2015; 95(3):370–86.