Abstract
Background:
The symptom experience of adolescents and young adults (AYAs) with cancer can differ based on the cancer and its treatments. A dearth of information exists on how symptoms differ by individual factors such as age and gender.
Objective:
The objectives were to describe symptoms in AYAs across five cancer diagnostic groups by the individual factors of age group, sex, race/ethnicity, and time since diagnosis; and then to describe symptoms based on these individual factors within diagnostic groups.
Interventions/Methods:
This was a secondary analysis of baseline data pooled from two multisite studies on symptoms in AYAs with acute lymphocytic leukemia, brain cancer, Hodgkin lymphoma, non-Hodgkin lymphoma, and sarcoma. Symptoms were assessed using the Computerized Symptom Capture Tool.
Results:
Data from 118 AYAs with cancer, ages 13–29 years, were analyzed. Eight of the most commonly reported symptoms were reported in at least four diagnostic groups. Across diagnostic groups, symptoms varied little based on individual factors. Within groups, certain symptoms differed in frequency by individual factors.
Conclusions:
The lack of major differences in symptom prevalence based on individual factors across diagnostic groups supports a heterogenous approach to symptom research with AYAs. The study identified individual factors within diagnostic groups worthy of further exploration.
Implications for Practice:
Providers can facilitate discussions with AYAs about symptoms by being aware of common symptoms that may occur in certain cancer diagnostic groups and based on individual factors. The significance of the individual symptom experience should not be underestimated, emphasizing the importance of person-centered symptom assessment.
Introduction
Adolescents and young adults with cancer find the symptoms that they experience due to the cancer and its treatment overwhelming and challenging to manage. The high burden of these symptoms is associated with poorer physical and mental health-related quality of life.1,2 Due to the various cancers that occur in this age group and the relatively small numbers of AYAs with cancer, knowledge of their symptom occurrences by diagnostic groups, as well as other individual factors such as age and gender, is limited.
AYAs often experience multiple symptoms regardless of diagnosis.1,3,4 Commonly occurring symptoms for AYAs include nausea, fatigue, lack of appetite, lack of energy, nausea, and pain.3,5,6 AYAs have identified several of these common symptoms as priority symptoms, (i.e., symptoms that are important to them), including lack of energy, nausea, difficulty sleeping and pain.3 Less is known about the occurrence of symptoms within specific diagnostic groups for AYAs because studies often are directed at either children/adolescents or adults who are 18 and older. In the pediatric literature, more symptoms were reported by children with solid tumors in one study,7 and with CNS tumors in another.8
The literature on AYA’s symptoms by individual factors such as age group, gender, race, and time since diagnosis is very limited. Three symptom trajectories (mild, moderate, and severe) for children and adolescents 3–18 years of age with acute lymphoblastic leukemia (ALL) during the initial 18 months of treatment were identified using latent class analysis. Latent class membership based on the trajectories for the symptoms of pain, sleep disturbance, fatigue, nausea, and depression did not differ based on age group, gender, or disease stratification.9 Cross-sectional studies of children and adolescents receiving myelosuppressive chemotherapy have documented the persistence of symptoms over a cycle of chemotherapy and during the course of a hospitalization.10–12 These studies did not, however, seek to determine differences in symptoms and their associated characteristics based on individual factors. Among AYAs specifically, one study found that adolescents reported more symptoms than young adults; however, the number of symptoms did not differ by gender.13 A recent study of survivors of AYA cancers did not compare individual symptom reports based on gender or diagnosis; however, females reported poorer physical health compared with males. Survivors of sarcoma and other less common cancers also reported poorer physical health compared with survivors of hematologic, breast, gynecologic, and testicular cancers.14 Further exploration of these factors is required. As a number of studies on symptoms often include multiple cancer diagnoses, an increased understanding of the symptoms experienced both within and across cancer diagnostic groups by individual factors will raise awareness of symptoms that are more likely to occur and guide management in order to reduce symptom burden and improve quality of life.
The objective of this secondary analysis was to examine the occurrence of symptoms in AYAs during active treatment. The aims were to: 1) describe symptoms in AYAs across cancer diagnostic groups by age group, sex, race/ethnicity, and time since diagnosis; and 2) describe symptoms within diagnostic groups by age group, sex, and time since diagnosis. While the examination of symptoms by race/ethnicity within diagnostic groups would be a valuable contribution to the science, the sample sizes were too small to conduct those analyses.
Methods
Sample and Setting
We conducted a secondary analysis of baseline data pooled from two multisite studies (Study 1 and Study 2) addressing symptom assessment among AYAs with any cancer receiving chemotherapy and their self-reported self-management to address the aims of this paper. Both studies were conducted at five academic medical centers in the U.S., though sites varied slightly. Regions included in Study 1 were Pacific Northwest, Intermountain West, Midwest, and Southeast, and in study 2 were Southwest, Intermountain West, Midwest, and Southeast. Data included in this secondary analysis from the combined studies were obtained from 118 AYAs. The purpose of Study 1 was to examine the feasibility and acceptability of the heuristics-based Computer Symptom Capture Tool (C-SCAT) with AYAs with cancer and the purpose of Study 2 was to examine the effects of the C-SCAT on AYAs’ self-management of cancer symptoms. AYAs with any cancer diagnosis, ages 13 to 29 years (study 1) and ages 15 to 29 years (study 2), receiving myelosuppressive chemotherapy, able to speak and read English, and had the physical and cognitive capacity to complete study procedures were eligible. Detailed descriptions of the design and methods of the two studies can be found in the original manuscripts.5,15
Instruments
Symptoms were assessed using the Computerized Symptom Capture Tool (C-SCAT), a heuristic-based symptom reporting tool that is administered via a tablet computer.15 The C-SCAT guides the user through a series of screens to create a graphical image of the symptoms and symptom clusters they experienced over the past 24 hours. They can identify temporal and causal relationships between the symptoms and symptom clusters, and identify priority symptoms and a priority symptom cluster. The list of symptoms was derived from the Memorial Symptom Assessment Scale.7 In study 1, the 30 symptoms from the MSAS 10–18 were in the C-SCAT. The adult version of the MSAS has two additional symptoms: sexual dysfunction and bloatedness. These were added to the C-SCAT for study 2 because these symptoms are pertinent to young adults. Demographic and clinical data collected from both studies included age, sex, race/ethnicity, cancer diagnosis, and time since diagnosis.
Procedure
For both studies, institutional review board approval was obtained at all sites. In the first study, participants completed the C-SCAT 24 to 96 hours after starting a cycle of inpatient or outpatient chemotherapy. In study 1, the range of symptoms reported was 1 to 21, and the mean (SD) number of symptoms was 8.14 (4.07).3 In the second study participants completed the C-SCAT just prior to an outpatient visit with an oncology provider on the day of starting a cycle of inpatient or outpatient chemotherapy. In study 2, the range of symptoms reported was 1 to 15, and the mean (SD) number of symptoms was 5.44 (4.00).4
Data Analysis
Data were analyzed using descriptive statistics. Although AYAs with any cancer diagnosis were eligible for the original studies, the diagnostic groups that were included in this analysis were those that had a sample size of 10 or more. These groups included acute lymphocytic leukemia (ALL), brain cancer, Hodgkin lymphoma (HL), Non-Hodgkin lymphoma (NHL), and sarcoma. Ages were categorized into adolescents (13 to 17 years), and young adults (18 to 29 years). Time since diagnosis was categorized as ≤ 6 and > 6 months.
Results
Sample description
Data from 118 AYAs were included in the analysis. Of these, 47% were adolescents (13–17 years old); 58% were male; 78% were White, non-Hispanic; and 63% were within 6 months of their initial diagnosis. See Table 1 for characteristics within diagnostic groups.
Table 1.
Sample Characteristics
| Characteristic | ALL (n=35) |
Brain (n=10) |
HL (n=28) |
NHL (n=11) |
Sarcoma (n=33) |
Total (n=118) |
|---|---|---|---|---|---|---|
| n (%) | n (%) | n (%) | n (%) | n (%) | n (%) | |
| Gender | ||||||
| Female | 9 (26) | 6 (60) | 18 (62) | 4 (36) | 12 (36) | 49 (42) |
| Male | 26 (74) | 4 (40) | 11 (38) | 7 (64) | 21 (64) | 69 (58) |
| Age | ||||||
| 13–17 years | 20 (57) | 3 (30) | 13 (45) | 4 (36) | 15 (45) | 55 (47) |
| 18–29 years | 15 (43) | 7 (70) | 16 (55) | 7 (64) | 18 (55) | 63 (53) |
| Race/Ethnicity | ||||||
| Black/AA | 3 (9) | 0 (0) | 4 (14) | 1 (9) | 4 (12) | 12 (10) |
| Hispanic | 4 (11) | 0 (0) | 1 (3) | 1 (9) | 2 (6) | 8 (7) |
| White | 27 (77) | 8 (80) | 24 (83) | 9 (82) | 24 (73) | 92 (78) |
| Other | 1 (3) | 2 (20) | 0 (0) | 0 (0) | 3 (9) | 6 (5) |
| Time since diagnosis | ||||||
| ≤ 6 months | 15 (43) | 4 (40) | 25 (86) | 8 (73) | 22 (67) | 74 (63) |
| > 6 months | 20 (57) | 6 (60) | 4 (14) | 3 (27) | 11 (33) | 44 (37) |
Abbreviations: AA, African American; ALL, acute lymphoblastic leukemia; HL, Hodgkin lymphoma; NHL, Non-Hodgkin lymphoma.
Symptom Profiles of Total Sample
Across studies, all 32 symptoms were identified by at least two AYAs. See Table 2. The three most frequently reported symptoms were nausea (n=63), lack of energy (n=61) and hair loss (n=50). Across all 32 symptoms, the percentages differed minimally for many symptoms across subsets of participants based on individual factors. For age group, only a few key differences were noted. For adolescents, the only symptoms with a marked higher percentage was changes in how food tastes (49% vs. 30%) and lack of appetite (47% vs. 29%); and for young adults, the symptoms with higher percentages were difficulty sleeping (49% vs. 31%), feeling irritable (33% vs. 16%), and pain (40% vs. 25%). Only one key difference in percentages was found for gender— difficulty sleeping was reported by a higher percentage of males (48% vs. 31%). For race/ethnicity, in the combined sample a greater percentage of White, non-Hispanic participants (48% vs. 31%) reported nausea compared to all others. With vomiting, a greater percentage of Black/African Americans (AA) reported vomiting compared to all others. In addition, a greater percentage of Black/AAs reported don’t look like myself compared to all others. A greater percentage of White, non-Hispanics and Hispanics reported dizziness compared to all others. Most of the more pronounced differences were noted with regard to the time since diagnosis. Symptoms reported at a higher percentage for those within 6 months of diagnosis included difficulty concentrating, difficulty sleeping, hair loss, lack of appetite, nausea and weight loss. For participants who were greater than 6 months from diagnosis, swallowing and lack of energy were reported at a higher percentage.
Table 2.
Symptom Prevalence Across Diagnostic Groups by Age Group, Sex, Race, and Time Since Diagnosis
| Age Group | Sex | Race/Ethnicity | Time Since Diagnosis | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Symptoms | Total n=118 |
A n=55 |
YA n=63 |
Female n=49 |
Male n=69 |
Black/AA (n=12) |
White (n=92) |
Hispanic (n=8) |
Other (n=6) |
≤ 6 months n=74 |
> 6 months n=44 |
| n (%) | n (%)a | n (%) a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| 1. Changes in How Food Tastes | 46 (39) | 27 (49) | 19 (30) | 19 (39) | 27 (39) | 4 (33) | 37 (40) | 2 (25) | 3 (50) | 32 (43) | 14 (32) |
| 2. Constipation | 30 (25) | 11 (20) | 19 (30) | 12 (24) | 18 (26) | 1 (8) | 27 (29) | 1 (13) | 1 (17) | 20 (27) | 10 (23) |
| 3. Cough | 20 (17) | 7 (13) | 13 (21) | 8 (16) | 12 (17) | 3 (25) | 15 (16) | 2 (25) | 0 (0) | 14 (19) | 6 (14) |
| 4. Diarrhea | 13 (11) | 4 (7) | 9 (14) | 6 (12) | 7 (10) | 0 (0) | 11 (12) | 2 (25) | 0 (0) | 9 (12) | 4 (9) |
| 5. Difficulty Concentrating | 27 (23) | 14 (25) | 13 (21) | 8 (16) | 19 (28) | 2 (17) | 24 (26) | 1 (13) | 0 (0) | 19 (26) | 4 (9) |
| 6. Difficulty Sleeping | 48 (41) | 17 (31) | 31 (49) | 15 (31) | 33 (48) | 5 (42) | 39 (42) | 2 (25) | 2 (33) | 29 (39) | 8 (18) |
| 7. Difficulty Swallowing | 4 (3) | 2 (4) | 2 (3) | 3 (6) | 1 (1) | 0 (0) | 4 (4) | 0 (0) | 0 (0) | 2 (3) | 19 (43) |
| 8. Dizziness | 28 (24) | 15 (27) | 13 (21) | 9 (18) | 19 (28) | 1 (8) | 24 (26) | 2 (25) | 1 (17) | 20 (27) | 8 (18) |
| 9. Donť Look Like Myself | 23 (19) | 8 (15) | 15 (24) | 12 (24) | 11 (16) | 5 (42) | 16 (17) | 1 (13) | 1 (17) | 13 (18) | 10 (23) |
| 10. Dry Mouth | 33 (28) | 16 (29) | 17 (27) | 14 (29) | 19 (28) | 4 (33) | 26 (28) | 1 (13) | 2 (33) | 21 (28) | 12 (27) |
| 11. Feeling Bloated | 7 (6) | 3 (5) | 4 (6) | 3 (6) | 4 (6) | 1 (8) | 6 (7) | 0 (25) | 0 (0) | 4 (5) | 3 (7) |
| 12. Feeling Drowsy | 48 (41) | 19 (35) | 29 (46) | 24 (49) | 24 (35) | 4 (33) | 40 (43) | 2 (25) | 2 (33) | 34 (46) | 14 (32) |
| 13. Feeling Irritable | 30 (25) | 9 (16) | 21 (33) | 11 (22) | 19 (28) | 3 (25) | 27 (29) | 0 (0) | 0 (0) | 16 (22) | 14 (32) |
| 14. Feeling Nervous | 19 (16) | 7 (13) | 12 (19) | 8 (16) | 11 (16) | 1 (8) | 17 (18) | 1 (13) | 0 (0) | 13 (18) | 6 (14) |
| 15. Feeling Sad | 18 (15) | 7 (13) | 11 (17) | 11 (22) | 7 (10) | 2 (17) | 15 (16) | 1 (13) | 0 (0) | 8 (11) | 10 (23) |
| 16. Hair Loss | 50 (42) | 26 (47) | 24 (38) | 19 (39) | 31 (45) | 5 (42) | 38 (41) | 4 (50) | 3 (50) | 38 (51) | 12 (27) |
| 17. Itching | 14 (12) | 5 (9) | 9 (14) | 5 (10) | 9 (13) | 0 (0) | 12 (13) | 2 (25) | 0 (0) | 8 (11) | 6 (14) |
| 18. Lack of Appetite | 44 (37) | 26 (47) | 18 (29) | 17 (35) | 27 (39) | 3 (25) | 38 (41) | 1 (13) | 2 (33) | 32 (43) | 12 (27) |
| 19. Lack of Energy | 61 (52) | 29 (53) | 32 (51) | 24 (49) | 37 (54) | 6 (50) | 47 (51) | 3 (38) | 5 (83) | 34 (46) | 27 (61) |
| 20. Mouth Sores | 7 (6) | 3 (5) | 4 (6) | 2 (4) | 5 (7) | 1 (8) | 5 (5) | 1 (13) | 0 (0) | 4 (5) | 3 (7) |
| 21. Nausea | 63 (53) | 32 (58) | 31 (49) | 27 (55) | 36 (52) | 4 (33) | 55 (60) | 3 (38) | 1 (17) | 48 (65) | 15 (34) |
| 22. Pain | 39 (33) | 14 (25) | 25 (40) | 17 (35) | 22 (31) | 3 (25) | 32 (35) | 1 (13) | 3 (50) | 22 (30) | 17 (39) |
| 23. Problems with Urination | 2 (2) | 1 (2) | 1 (2) | 0 (0) | 2 (3) | 0 (0) | 2 (2) | 0 (0) | 0 (0) | 1 (1) | 1 (2) |
| 24. Sexual Dysfunction | 2 (2) | 0 (0) | 2 (3) | 1 (2) | 1 (1) | 0 (0) | 2 (2) | 0 (0) | 0 (0) | 1 (1) | 1 (2) |
| 25. Shortness of Breath | 3 (3) | 2 (4) | 1 (2) | 1 (2) | 2 (3) | 0 (0) | 3 (3) | 0 (0) | 0 (0) | 2 (3) | 1 (2) |
| 26. Skin Changes | 14 (12) | 6 (11) | 8 (13) | 5 (10) | 9 (13) | 3 (25) | 9 (10) | 1 (13) | 1 (17) | 7 (9) | 7 (16) |
| 27. Sweating | 24 (20) | 8 (15) | 16 (25) | 8 (16) | 16 (23) | 3 (25) | 17 (18) | 3 (38 | 1 (17) | 15 (20) | 9 (20) |
| 28. Swelling in Arms/Legs | 7 (6) | 1 (2) | 6 (10) | 7 (14) | 0 (0) | 0 (0) | 7 (8) | 0 (0) | 0 (0) | 2 (3) | 5 (11) |
| 29. Tingling in Hands/Feet | 21 (18) | 10 (18) | 11 (17) | 6 (12) | 15 (21) | 3 (25) | 16 (17) | 2 (25) | 0 (0) | 14 (19) | 7 (16) |
| 30. Vomiting | 28 (24) | 13 (24) | 15 (24) | 15 (31) | 13 (19) | 5 (42) | 21 (23) | 1 (13) | 1 (17) | 21 (28) | 7 (16) |
| 31. Weight Loss | 25 (21) | 14 (25) | 11 (17) | 7 (14) | 18 (26) | 2 (17) | 21 (23) | 0 (0) | 2 (33) | 20 (27) | 5 (11) |
| 32. Worrying | 24 (20) | 7 (13) | 17 (27) | 11 (22) | 13 (19) | 2 (17) | 21 (23) | 1 (13) | 0 (0) | 13 (18) | 11 (25) |
Abbreviations: A, adolescent; AA, African American; YA, young adult.
Percent is of the particular variable sample size. For example, for Changes in How Food Tastes, 27 adolescents reported this symptom. The 49% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 27/55 = 49%.
Symptom Profiles Within Five Diagnostic Groups
The top ten most frequently reported symptoms across all diagnostic groups are reported in Table 3. Eight of these symptoms were common in at least four diagnostic groups. Lack of energy and hair loss were reported by participants across all five diagnostic groups.
Table 3.
Ten Most Frequently Reported Symptoms Across and Within Diagnostic Groups
| Symptom | Across Diagnostic Groupsa (n=118) |
ALLa (n=35) |
Brain (n=10) |
HLa (n=29) |
NHLa (n=11) |
Sarcomaa (n=33) |
|---|---|---|---|---|---|---|
| n % | n % | n % | n % | n % | n % | |
| Nausea | 63 (53) | 17 (49) | 20 (69) | 7 (64) | 18 (55) | |
| Lack of Energy | 61 (52) | 18 (51) | 5 (50) | 13 (45) | 4 (36) | 21 (64) |
| Hair Loss | 50 (42) | 13 (37) | 3 (30) | 14 (48) | 5 (45) | 15 (45) |
| Feeling Drowsy | 48 (41) | 4 (40) | 16 (55) | 5 (45) | 18 (55) | |
| Difficulty Sleeping | 48 (41) | 15 (33) | 4 (40) | 6 (55) | 16 (48) | |
| Changes in how Food Tastes | 46 (39) | 12 (34) | 4 (40) | 10 (34) | 17 (52) | |
| Lack of Appetite | 44 (37) | 11 (31) | 3 (30) | 11 (38) | 17 (52) | |
| Pain | 39 (33) | 12 (34) | 9 (31) | 4 (36) | 13 (40) | |
| Dry Mouth | 33 (28) | 8 (23) | 3 (30) | 11 (33) | ||
| Feeling Irritable | 30 (25) | 8 (23) | 9 (31) | 4 (36) | ||
| Constipation | 30 (25) | 2 (20) | 10 (34) | |||
| Vomiting | 9 (26) | 11 (38) | ||||
| Dizziness | 2 (20) | 4 (36) | 12 (36) | |||
| Difficulty Concentrating | 2 (20) | 5 (45) | 11 (33) | |||
| Weight Loss | 9 (26) | |||||
| Don’t Look Like Myself | 6 (55) | |||||
| Worrying | 5 (45) | |||||
| Cough | 4 (36) | |||||
| Feeling Sad | 4 (36) |
Abbreviations: AA, African American; ALL, acute lymphoblastic leukemia; HL, Hodgkin lymphoma; NHL, Non-Hodgkin lymphoma.
More than 10 symptoms are listed because of a tie in frequency of the tenth symptom.
Descriptive characteristics of the top ten most frequently reported symptoms within each of the five diagnostic groups by individual factors are in Tables 4 – 8. Some of these most frequently reported symptoms that differed notably within individual factors in each of diagnostic groups will be highlighted. For ALL, a greater percentage of adolescents reported hair loss (50% vs. 20%), lack of appetite (45% vs. 13%), and weight loss (40% vs. 7%); while a greater percentage of young adults reported lack of energy (60% vs. 45%), difficulty sleeping (53% vs. 35%), pain (53% vs. 20%), and feeling irritable (30% vs. 10%). Many of the symptoms did not differ greatly by gender, though a discernibly higher percentage of males compared to females reported hair loss (46% vs 11%), changes in how food tastes (42% vs 11%), weight loss (31% vs 11%), and feeling irritable (27% vs 11%). For females, 67% reported nausea compared to 42% of the males. The AYAs with ALL who were within 6 months of diagnosis reported nausea (60% vs. 40%), hair loss (47% vs. 30%), lack of appetite (47% vs. 20%), vomiting (40% vs. 15%), and weight loss (40% vs. 15%) at a higher percentage, while those who were diagnosed longer than 6 months reported lack of energy (60% vs. 40%), difficulty sleeping (50% vs. 33%), pain (50% vs. 13%), and feeling irritable (35% vs. 7%) at a higher percentage.
Table 4.
Symptom Prevalence in ALL by Age Group, Sex, and Time Since Diagnosis
| Age Group | Sex | Time Since Diagnosis | |||||
|---|---|---|---|---|---|---|---|
| Symptoms | Total n=35 |
A n=20 |
YA n=15 |
Female n=9 |
Male n=26 |
≤ 6 months n=15 |
> 6 months n=20 |
| n (%) | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| Lack of Energy | 18 (51) | 9 (45) | 9 (60) | 5 (55) | 13 (50) | 6 (40) | 12 (60) |
| Nausea | 17 (49) | 10 (50) | 7 (47) | 6 (67) | 11 (42) | 9 (60) | 8 (40) |
| Difficulty Sleeping | 15 (33) | 7 (35) | 8 (53) | 3 (33) | 12 (46) | 5 (33) | 10 (50) |
| Hair Loss | 13 (37) | 10 (50) | 3 (20) | 1 (11) | 12 (46) | 7 (47) | 6 (30) |
| Changes in How Food Tastes | 12 (34) | 7 (35) | 5 (33) | 1 (11) | 11 (42) | 6 (40) | 6 (30) |
| Pain | 12 (34) | 4 (20) | 8 (53) | 3 (33) | 9 (35) | 2 (13) | 10 (50) |
| Lack of Appetite | 11 (31) | 9 (45) | 2 (13) | 2 (22) | 9 (35) | 7 (47) | 4 (20) |
| Vomiting | 9 (26) | 6 (30) | 3 (20) | 2 (22) | 7 (27) | 6 (40) | 3 (15) |
| Weight Loss | 9 (26) | 8 (40) | 1 (7) | 1 (11) | 8 (31) | 6 (40) | 3 (15) |
| Dry Mouth | 8 (23) | 4 (20) | 4 (27) | 2 (22) | 6 (23) | 3 (20) | 5 (25) |
| Feeling Irritable | 8 (23) | 2 (10) | 6 (30) | 1 (11) | 7 (27) | 1 (7) | 7 (35) |
Abbreviations: A, adolescent; ALL, acute lymphoblastic leukemia; YA, young adult.
Percent is of the particular variable sample size. For example, for Lack of Energy, 9 adolescents reported this symptom. The 45% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 9/20 = 45%.
Table 8.
Symptom Prevalence in Sarcoma by Age Group, Sex, and Time Since Diagnosis
| Age Group | Sex | Time Since Diagnosis | |||||
|---|---|---|---|---|---|---|---|
| Symptoms | Total n=33 |
A n=15 |
YA n=18 |
Female n=12 |
Male n=21 |
≤ 6 months n=22 |
> 6 months n=11 |
| n (%) | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| Lack of Energy | 21 (64) | 11 (73) | 10 (56) | 7 (58) | 14 (67) | 12 (55) | 9 (82) |
| Feeling Drowsy | 18 (55) | 8 (53) | 10 (56) | 9 (75) | 9 (43) | 11 (50) | 7 (64) |
| Nausea | 18 (55) | 10 (67) | 8 (44) | 6 (50) | 12 (57) | 15 (68) | 3 (27) |
| Changes in How Food Tastes | 17 (52) | 11 (73) | 6 (33) | 7 (58) | 10 (48) | 12 (55) | 5 (45) |
| Lack of Appetite | 17 (52) | 9 (60) | 8 (44) | 5 (42) | 12 (57) | 12 (55) | 5 (45) |
| Difficulty Sleeping | 16 (48) | 6 (40) | 10 (56) | 4 (33) | 12 (57) | 12 (55) | 4 (36) |
| Hair Loss | 15 (45) | 6 (40) | 9 (50) | 6 (50) | 9 (43) | 11 (50) | 4 (36) |
| Pain | 13 (40) | 4 (27) | 9 (50) | 4 (33) | 9 (43) | 8 (36) | 5 (45) |
| Dizziness | 12 (36) | 6 (40) | 6 (33) | 4 (33) | 8 (38) | 9 (41) | 3 (27) |
| Difficulty Concentrating | 11 (33) | 6 (40) | 5 (28) | 2 (17) | 9 (43) | 7 (32) | 4 (36) |
| Dry Mouth | 11 (33) | 5 (33) | 6 (33) | 4 (33) | 7 (58) | 6 (27) | 5 (45) |
Abbreviations: A, adolescent; YA, young adult.
Percent is of the particular variable sample size. For example, for Lack of Energy, 11 adolescents reported this symptom. The 73% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 11/15 = 73%.
The sample size for those with brain cancer was small (n =10); however, their symptom experience was remarkable along several aspects. A notably greater percentage of adolescents reported changes in how food tastes (67% vs. 29%) and dry mouth (67% vs. 14%), otherwise the symptoms did not differ to any great degree between the adolescents and young adults. For gender, a higher percentage of males reported a number of symptoms, including difficulty sleeping (75% vs. 17%), dry mouth (50% vs. 17%), constipation (50% vs. 0%), difficulty concentrating (50% vs. 0%), and dizziness (50% vs. 0%). The AYAs who were within 6 months of diagnosis reported most of the symptoms more frequently than those diagnosed for greater than 6 months, with the exception of difficulty sleeping.
Among participants with HL, the symptom profiles for adolescents and females was particularly striking. A higher percentage of adolescents reported hair loss (62% vs. 38%), lack of appetite (54% vs. 25%), changes in how food tastes (46% vs. 25%), constipation (46% vs. 25%), and pain (46% vs. 19%); while the only symptom reported by a greater percentage of young adults was vomiting (50% vs. 23%). A greater percentage of females compared to males reported lack of appetite (44% vs. 27%), vomiting (50% vs. 18%), constipation (44% vs. 18%), feeling irritable (39% vs. 18%), and pain (39% vs. 18%). AYAs within 6 months of a HL diagnosis more frequently report nausea (72% vs. 50%), hair loss (52% vs. 25%), lack of energy (48% vs. 25%) and pain (36% vs. 0) relative to those who were more than 6 months following their initial diagnosis. AYAs who were past 6 months since diagnosis more frequently reported lack of appetite (50% vs. 36%) and feeling irritable (50% vs. 28%).
The number of participants with NHL was also small (n = 11). A greater percentage of adolescents reported dizziness (50% vs. 29%); and a greater percentage of young adults reported nausea (71% vs. 50%), difficulty sleeping (71% vs. 25%), feeling drowsy (71% vs. 0%), hair loss (57% vs. 25%), and pain (57% vs. 0%). A greater percentage of females reported don’t look like myself (75% vs. 43%), difficulty concentrating (75% vs. 29%), and worrying (75% vs. 29%), feeling sad (50% vs. 29%), and pain (50% vs. 29%); while a greater percentage of males reported nausea (71% vs. 50%). In general, symptoms were more prevalent for those diagnosed within the last 6 months, particularly difficulty sleeping (63% vs. 33%), don’t look like myself (75% vs. 0%), hair loss (63% vs. 0%), worrying (63% vs. 0%), and feeling sad (50% vs. 0%). Symptoms reported at a higher percentage for AYAs who were greater than 6 months from diagnosis were dizziness (100% vs. 13%) and lack of energy (67% vs. 25%).
The differences in symptom occurrence by individual factors for AYAs with sarcoma was particularly apparent between age groups and gender. For age group, a higher percentage of adolescents reported a number of symptoms including lack of energy (73% vs. 56%), nausea (67% vs. 44%), changes in how food tastes (73% vs. 33%), lack of appetite (60% vs. 44), while the only symptoms reported at a markedly higher percentage by young adults was difficulty sleeping (56% vs. 40%) and pain (50% vs. 27%). For gender, males reported a higher percentage of several symptoms, including lack of appetite (57% vs. 42%), difficulty sleeping (57% vs. 33%), difficulty concentrating (43% vs. 17%), and dry mouth (58% vs. 33%). Feeling drowsy was the only symptom reported by females (75% vs. 43%) at a higher percentage. The symptom burden for AYAs with sarcoma was fairly substantial regardless of time since diagnosis, but the percentages were higher for those within 6 months of diagnosis for nausea (68% vs. 27%), and difficulty sleeping (55% vs. 36%); while for those more than 6 months from diagnosis, a higher percentage reported lack of energy (82% vs. 55%).
Discussion
This study described symptom profiles across and within diagnostic groups in AYAs with cancer in active treatment. Our findings indicate that in the total sample, (i.e., across diagnostic groups), the symptom experience did not differ to any great extent by the individual factors of age group, gender, race, or time since diagnosis except for a few symptoms within each category. The top ten symptoms in the total sample were reflected for the most part within each diagnostic group except for NHL, in which four of the symptoms were unique.
Within each of the five diagnostic groups, the frequency of the top ten symptoms varied. With respect to age group, adolescents with sarcoma and HL reported more symptoms at a higher frequency, while young adults with NHL reported more symptoms. No major differences were noted by age group with ALL and brain cancer. For gender, females with HL reported more symptoms at a higher percentage rate, while males with brain cancer reported more symptoms at a higher percentage rate. These findings suggest that adolescents and females with HL may be at risk for experiencing more symptoms. No major differences were noted by gender with ALL, NHL, and sarcoma. For time since diagnosis, individuals who were within 6 months of diagnosis with HL, NHL, and brain cancer reported more symptoms at a higher percentage rate. However, it is important to highlight that for ALL and sarcoma, there was a similar number of symptoms reported at a higher rate within and after 6 months of diagnosis, indicating that the symptom experience did not improve dramatically after the first 6 months of diagnosis.
One of the intentions of examining symptom occurrence by the subsets of age group, gender, and time since diagnosis was to determine whether any clear differences existed between the total sample and the five cancer diagnostic groups. Our findings suggest that while there were some differences within groups compared to across groups, there were no overall major differences. In other words, while there were some signals that age group, gender, and time since diagnosis may be useful for predicting who may be at greater risk for certain symptoms, the symptom experience for individuals is unique. The following paragraphs describe the comparisons of the total sample to the five diagnostic groups on the most frequently occurring symptoms by age group, gender, and time since diagnoses.
While prior studies have compared symptom experiences, such as that of fatigue, between younger children and adolescents16 as well as AYAs and older adults,17 exploration of age-related differences within AYA study samples is sparse. Although AYAs are recognized as a distinct, understudied group of individuals with cancer, the consequences of the developmental heterogeneity within this group18 on their cancer symptom experience is underexplored. For example, because young adults 25 years of age and older are more likely to be managing career and childcare demands relative to younger AYAs and typically receive their cancer care in adult settings, their symptom experience and access to resources to support symptom management may differ.19–21
Although our study sample was not large enough to support more robust comparisons, we did observe some differences based on age group to explore in future studies. Changes in how food tastes were more frequently reported by adolescents in the total sample, and in those with brain tumors, HL, and sarcoma. Lack of appetite was reported more frequently by adolescents in the total sample, as well as adolescents with ALL, HL, and sarcoma. Perhaps attributable to additional work and family demands, difficulty sleeping was reported more frequently by young adults in the total sample, as well as young adults with ALL, NHL, and sarcoma. Likewise, feeling irritable was reported more frequently by young adults in the total sample, as well as young adults with ALL and NHL. Reports of pain, however, were more variable across the study sample. Pain was reported more frequently by young adults in the total sample, as well as among young adults with ALL and NHL. Adolescent participants with HL and sarcoma, however, reported pain more frequently. In summary, these age group-based comparisons within and across diagnostic groups point to some symptoms that may be more prevalent in adolescents or young adults. Clearly defined patterns, however, are not evident, and additional investigation is warranted.
In this study, only a few similarities for gender were noted when comparing across diagnostic groups (i.e., the total sample) to within groups. More males reported difficulty sleeping in the total sample, sarcoma, and brain cancer, while more females reported feeling drowsy in the total sample and sarcoma. Differences in symptom occurrence by gender were most apparent within certain groups such as sarcoma, HL, and NHL. This information adds to the limited evidence suggesting that overall, females experience increased symptoms with subsequent decreases in quality of life.22,23
In the time since diagnosis subset, several symptoms occurred more frequently within the first 6 months of diagnosis in both the total sample and within several diagnostic groups. It is likely the symptoms of nausea, hair loss, appetite loss, and difficulty sleeping occurred more frequently early in the disease trajectory because these symptoms are acute side effects of initial chemotherapy regimens.24 While all study participants were receiving chemotherapy, some AYAs who were later in their disease course could have transitioned to less intensive maintenance regimens, such as with ALL, allowing these symptoms to improve. Symptoms frequently reported by AYAs in several diagnostic groups who were more than 6 months since diagnosis included lack of energy, difficulty sleeping, and feeling irritable. These symptoms may be associated with continued intensive chemotherapy regimens and/or with refractory disease. These symptoms are also known to become persistent and chronic for some AYAs cancer survivors.25–27
The ten most frequently reported symptoms by AYAs with NHL were somewhat different from the other diagnostic groups and call for attention. Four of the symptoms were not among the top ten of any other diagnostic group, including don’t look like myself, worrying, cough, and feeling sad. Most notably, five of the top ten symptoms were psychological, which is more than in any other diagnostic group. A couple of reasons may account for this difference. It could be that these participants had more intense treatments or were at a later stage in their disease. Regardless of the reasons, attention to these types of symptoms is warranted.
Clinical implications
Adolescents and young adults look to the oncology team to assist them with managing their cancer-related symptoms. As previous research suggests, they may be hesitant to reveal the totality of symptoms they are experiencing. It is incumbent upon the oncology team to facilitate conversations around the symptoms that are bothering the AYA. Findings from this study can help to guide that conversation in several of ways. Clinicians can discuss the common and less common symptoms that may occur. They can also ask the AYA what symptoms are most important or bothersome to them and reassure them that they are not alone in experiencing these symptoms. Given the number of psychological symptoms that are among the top ten most frequently reported symptoms within and across diagnostic groups, clinicians can discuss the importance of reporting these symptoms as well, in order to develop a management plan. Clinicians should be aware of the evidence of symptoms that are common overall, and within subsets such as age group, gender, and time since diagnosis. To provide person-centered symptom management, however, assessing each patient as a distinct individual and managing his/her individual symptom experience is crucial.28
Limitations
Limitations of this study centered on the secondary data analysis and pooling data from two studies. Several limitations associated with the secondary analysis were that the data had already been collected thus the sample sizes per diagnostic group had been set as well as the number of participants within each individual factor (e.g., age group, gender). A limitation related to the pooling of data from the two multisite studies was that the categories for race/ethnicity were different between studies which limited the data that we could analyze related to race/ethnicity. Symptoms were assessed at different time points in the two studies. While in study 1, symptoms were assessed after chemotherapy was started, in study 2, symptoms were assessed just prior to the start of chemotherapy, when symptoms are not as prevalent. Completing a symptom assessment about seven days after the start of chemotherapy would more likely yield reports of much higher symptom incidence. Another limitation is that the AYAs were in various trajectories of their cancer, some early in treatment while others had been receiving treatment for a lengthy period of time. However, they were all in active treatment.
Conclusion
These data provide a starting point for exploring symptoms by individual factors within and across diagnostic groups in AYA’s with cancer during treatment. The findings can be used to guide the direction of future research in several ways. They demonstrate that symptoms do not differ greatly across diagnostic groups, thus with respect to diagnosis, a heterogenous approach to conducting research on symptom management is reasonable. These data also provide signals of certain symptom patterns with respect to age group, gender, and time since diagnosis within diagnostic groups which can be further explored. However, it is important to note that although there may be symptom patterns, what is clear both from these findings and other literature is that each AYA’s symptom experience is dynamic and individual. While identifying and describing symptom profiles may be helpful, there is a critical need to take a person-centered approach to symptom management.28 Advancing the science of symptoms is necessary for categorizing symptoms and developing interventions to mitigate the effects of symptoms; however, clinicians will be most effective when they are responsive to the AYA’s actual symptom experience.
Table 5.
Symptom Prevalence in Brain Cancer by Age Group, Sex, and Time Since Diagnosis
| Age Group | Sex | Time Since Diagnosis | |||||
|---|---|---|---|---|---|---|---|
| Symptoms | Total n=10 |
A n=3 |
YA n=7 |
Female n=6 |
Male n=4 |
≤ 6 months n=4 |
> 6 months n=6 |
| n (%) | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| Lack of Energy | 5 (50) | 2 (67) | 3 (43) | 3 (50) | 2 (50) | 2 (50) | 3 (50) |
| Changes in How Food Tastes | 4 (40) | 2 (67) | 2 (29) | 3 (50) | 1 (25) | 3 (75) | 1 (17) |
| Difficulty Sleeping | 4 (40) | 1 (33) | 3 (43) | 1 (17) | 3 (75) | 1 (25) | 3 (50) |
| Feeling Drowsy | 4 (40) | 1 (33) | 3 (43) | 2 (33) | 2 (50) | 3 (75) | 1 (17) |
| Dry Mouth | 3 (30) | 2 (67) | 1 (14) | 1 (17) | 2 (50) | 2 (50) | 1 (17) |
| Hair Loss | 3 (30) | 1 (33) | 2 (29) | 1 (17) | 2 (50) | 2 (50) | 1 (17) |
| Lack of Appetite | 3 (30) | 1 (33) | 2 (29) | 2 (33) | 1 (25) | 2 (50) | 1 (17) |
| Constipation | 2 (20) | 0 (0) | 2 (29) | 0 (0) | 2 (50) | 1 (25) | 1 (17) |
| Difficulty Concentrating | 2 (20) | 1 (33) | 1 (14) | 0 (0) | 2 (50) | 2 (50) | 0 (0) |
| Dizziness | 2 (20) | 1 (33) | 1 (14) | 0 (0) | 2 (50) | 1 (25) | 1 (17) |
Abbreviations: A, adolescent; YA, young adult.
Percent is of the particular variable sample size. For example, for Lack of Energy, 2 adolescents reported this symptom. The 67% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 2/3 = 67%.
Table 6.
Symptom Prevalence in HL by Age Group, Sex, and Time Since Diagnosis
| Age Group | Sex | Time Since Diagnosis | |||||
|---|---|---|---|---|---|---|---|
| Symptoms | Total n=29 |
A n=13 |
YA n=16 |
Female n=18 |
Male n=11 |
≤ 6 months n=25 |
> 6 months n=4 |
| n (%) | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| Nausea | 20 (69) | 10 (77) | 10 (63) | 12 (67) | 8 (73) | 18 (72) | 2 (50) |
| Feeling Drowsy | 16 (55) | 7 (54) | 9 (56) | 10 (56) | 6 (55) | 14 (56) | 2 (50) |
| Hair Loss | 14 (48) | 8 (62) | 6 (38) | 9 (50) | 5 (45) | 13 (52) | 1 (25) |
| Lack of Energy | 13 (45) | 6 (46) | 7 (44) | 8 (44) | 5 (45) | 12 (48) | 1 (25) |
| Lack of Appetite | 11 (38) | 7 (54) | 4 (25) | 8 (44) | 3 (27) | 9 (36) | 2 (50) |
| Vomiting | 11 (38) | 3 (23) | 8 (50) | 9 (50) | 2 (18) | 10 (40) | 1 (25) |
| Changes in How Food Tastes | 10 (34) | 6 (46) | 4 (25) | 7 (39) | 3 (27) | 9 (36) | 1 (25) |
| Constipation | 10 (34) | 6 (46) | 4 (25) | 8 (44) | 2 (18) | 9 (36) | 1 (25) |
| Feeling Irritable | 9 (31) | 4 (31) | 5 (31) | 7 (39) | 2 (18) | 7 (28) | 2 (50) |
| Pain | 9 (31) | 6 (46) | 3 (19) | 7 (39) | 2 (18) | 9 (36) | 0 (0) |
Abbreviations: A, adolescent; HL, Hodgkin lymphoma; YA, young adult.
Percent is of the particular variable sample size. For example, for Nausea, 10 adolescents reported this symptom. The 77% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 10/13 = 77%.
Table 7.
Symptom Prevalence in NHL by Age Group, Sex, and Time Since Diagnosis
| Age Group | Sex | Time Since Diagnosis | |||||
|---|---|---|---|---|---|---|---|
| Symptoms | Total n=11 |
A n=4 |
YA n=7 |
Female n=4 |
Male n=7 |
≤ 6 months n=8 |
> 6 months n=3 |
| n (%) | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | n (%)a | |
| Nausea | 7 (64) | 2 (50) | 5 (71) | 2 (50) | 5 (71) | 5 (63) | 2 (67) |
| Difficulty Sleeping | 6 (55) | 1 (25) | 5 (71) | 2 (50) | 4 (57) | 5 (63) | 1 (33) |
| Donť Look Like Myself | 6 (55) | 2 (50) | 4 (57) | 3 (75) | 3 (43) | 6 (75) | 0 (0) |
| Difficulty Concentrating | 5 (45) | 2 (50) | 3 (43) | 3 (75) | 2 (29) | 4 (50) | 1 (33) |
| Feeling Drowsy | 5 (45) | 0 (0) | 5 (71) | 2 (50) | 3 (43) | 4 (50) | 1 (33) |
| Hair Loss | 5 (45) | 1 (25) | 4 (57) | 2 (50) | 3 (43) | 5 (63) | 0 (0) |
| Worrying | 5 (45) | 2 (50) | 3 (43) | 3 (75) | 2 (29) | 5 (63) | 0 (0) |
| Cough | 4 (36) | 1 (25) | 3 (43) | 2 (50) | 2 (29) | 3 (38) | 1 (33) |
| Dizziness | 4 (36) | 2 (50) | 2 (29) | 1 (25) | 3 (43) | 1 (13) | 3 (100) |
| Feeling Irritable | 4 (36) | 1 (25) | 3 (43) | 1 (25) | 3 (43) | 3 (38) | 1 (0) |
| Feeling Sad | 4 (36) | 1 (25) | 3 (43) | 2 (50) | 2 (29) | 4 (50) | 0 (0) |
| Lack of Energy | 4 (36) | 1 (25) | 3 (43) | 1 (25) | 3 (43) | 2 (25) | 2 (67) |
| Pain | 4 (36) | 0 (0) | 4 (57) | 2 (50) | 2 (29) | 3 (38) | 1 (33) |
Abbreviations: A, adolescent; NHL, Non-Hodgkin lymphoma; YA, young adult.
Percent is of the particular variable sample size. For example, for Nausea, 2 adolescents reported this symptom. The 50% arises from the number of adolescents who reported the symptom divided by the total number of adolescents – 2/4 = 50%.
Sources of Funding:
S. Ameringer received funding from St. Baldrick’s Foundation, Virginia Commonwealth University (VCU) School of Nursing, and UL1TR002649, VCU. C. F. Macpherson received funding from Seattle Children’s Foundation. J. Erickson received funding from Advancing a Healthier Wisconsin Foundation, Clinical and Translational Science Institute of Southeastern Wisconsin, and UL1TR001436, Medical College of Wisconsin. L. Linder received funding from St. Baldrick’s Foundation, University of Utah, and UL1TR00105, University of Utah.
Footnotes
Conflicts of Interest: The authors declare no conflicts of interest
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