VOLUME

This descriptive correlational study consisted ofadolescents with cancer at both the inpatient and outpatientdepartments of Ramathibodi Hospital from February to June2018. This study was approved by the Committee on HumanRights Related to Research Involving Human Subjects,Faculty of Medicine Ramathibodi Hospital, Mahidol University.

The inclusion criteria were as follows:

1. Adolescents with any type of cancer.
2. Aged 10-15 years.
3. Received at least one cycle of chemotherapy prior to theirparticipation in this study, and receiving chemotherapyduring data collection.
4. Able to communicate and understand Thai language.
5. Willing to participate in this study.
6. No diagnosis of mental illness or cognitive impairment.

The calculation for the sample size at the level of power= 80%, α = 0.05; effect size = 0.5 (r = -0.52, the lowestcorrelation coefficient of Baggott and associates7) determinedthat 25 participants were required for this study.

Instruments

1. The Demographic and Clinical Data forms were usedto collect general information about the participants, includingtheir gender, age, date of birth, and educational level anddisease characteristics including diagnosis and treatments.
2. The Memorial Symptom Assessment Scale 10-18 (MSAS10-18) was developed by Collins and team.15 It covers 30symptoms. This self-report instrument assesses eachrespondent’s symptoms, as experienced during the previousweek, in terms of the occurrence, frequency (1-4 scores),severity (1-4 scores), and distress (0-4 scores) of eachsymptom. If a symptom occurs, the patient rates eachsymptom’s dimension. Higher scores indicate higherfrequency, severity, and distress. The total number ofsymptoms was the number of symptoms reported by eachparticipant. With regards to the mean symptom severity and distress for the 30 symptoms, a zero value was usedto calculate each symptom for the entire sample. The rankingof symptom frequency, severity, and distress was explainedas a percentage of rating in 3-4 scores of each dimension.This instrument was translated to Thai using back-translationtechnique. The Cronbach’s alpha coefficients in the pilotsample were 0.96, 0.90, 0.94, and 0.75 for the categoriesof total, psychological, physical, and global symptomdistress. For the actual study sample, they were found tobe 0.96, 0.90, 0.94, and 0.75, respectively.
3. The Pediatric QOL Inventory Generic Core ScalesVersion 4.0 (PedsQLTM) was developed by Varni andteam16 specifically for children aged 8-12 and for teensaged 13-18 years (Thai version17). They consist of 23 itemsincluding physical, emotional, social, and school functioning.These items are used to assess the level of QOL of childrenand adolescents during the preceding month. For each item,there is a five-point Likert response scale, with the followingmeanings: 0 (Never a Problem) to 4 (Almost Always aProblem). To score this instrument, each person’s responseto the items is reversed to a 0-100 scale, as follows: 0 = 100;1 = 75; 2 = 50; 3 = 25; and 4 = 0. Higher PedsQL 4.0 scoresindicate better QOL. In the pilot sample, the Cronbach’salpha coefficients were found to be 0.93, 0.91, and 0.85for the total, physical health, and psychosocial subscales.For the main study sample, they were found to be 0.89,0.86, and 0.83, respectively.

Data Analysis

The demographic data, clinical data, symptom experiences,and QOL of participants were analyzed using various conceptsof descriptive statistics. The relationships between each variableof symptom experiences and overall QOL were analyzed usingPearson’s product-moment correlational statistics.

A total of 26 adolescents with cancer met the inclusioncriteria. Only one adolescent declined to participate in thestudy, citing inconvenience as a reason. Therefore, the studysample consisted of 25 adolescents with cancer. The majorityof the adolescents were male (68%) with a mean age of12.74 ± 20.44 years (range = 10.2-15.8 years). Sixteenparticipants (64%) had stopped attending school. The mostcommon cancer diagnoses were hematological cancers (56 %);leukemia (85.7%) and lymphoma (14.3%). The participants’length of time since diagnosis to their entry into the studyranged from 1 to 11 years (1.8 ± 31.58) with most (84%) lessthan 3 years. Thirty-six percent (36%) of the adolescents hadbeen treated with surgery, in addition to chemotherapy, andslightly more than half of them (56%) had been treated asinpatients (Table 1).

Table 1: Demographics and characteristics (n = 25)

Symptom Experiences

According to MSAS 10-18, the participants experienceda mean number of 11.80 ± 5.61 symptoms. The mean ratingof the symptom frequency was 0.82 ± 0.46, with a symptomseverity rate of 0.62 ± 0.41, and a symptom distress rate of0.40 ± 0.42 (Table 2). The number of experienced symptoms,or the prevalence rate of symptoms among the participants,ranged from 1 to 23 symptoms. More than half of the participantsexperienced dry mouth (80%), lack of appetite (68%), and lackof energy (64%) (Table 3). The most frequent symptom was dry mouth (45%), followed by numbness (40%), and lack ofenergy (37.5%). The most severe symptom was swelling ofarms or legs (33.3%) as well as hair loss (30%), and nausea(28.6%). The most distressing symptom was changes in theway food tastes (42.9%) followed by swelling of arms or legs(33.3%), and lack of energy (31.3%). There were differencesin every dimension of each symptom. The prevalence of eachsymptom was not related to its rate of frequency, severity, ordistress. Dry mouth was reported to be the most common andfrequent symptom, but not as the most severe or distressingsymptom for them (Table 4 and Figure 1).

Table 2: The symptom experiences on MSAS 10-18 scores (n = 25)

Table 3: The experienced symptoms (n = 25)

Table 4: The overview of total 30 experienced symptoms by sample in every dimension (n = 25)

Figure 1: The 10 most prevalent symptoms with mean frequency, severity, and distress ratings

Quality of Life (QOL)

Regarding QOL, the participants reported a mean totalscore of QOL of 72.09 (SD = 16.70). The mean scores of eachaspect of QOL revealed that most of the participants had highscores in the following aspects of their QOL: 1) Social (84scores); 2) Emotional (77.40 scores); 3) School (68.4 scores);and 4) Physical functioning (63.63 scores).

Relationship between Symptom Experiences and QOL

In regards to the correlation between symptom experiencesand QOL, each dimension of symptom experiences (the numberof symptoms experienced; symptom severity; and symptomdistress) was negatively correlated with overall QOL, with thestatistical significance at p < 0.05 (r = -0.597, -0.594, and-0.582).

The result of this study showing that the participantsexperienced a mean of 11.8 symptoms is similar to the studyof Baggott and associates7 (10.6 symptoms). The most prevalentsymptom experienced by the participants was dry mouth. Mostof the participants were in their first year after their diagnosisof cancer, during which patients usually receive intense and frequent treatment cycles. Almost half of them were receivinghigh doses of methotrexate at the time of data collection, andso they mostly experienced dry mouth. Methotrexate generallyaffects normal cells in the same way as malignant cells, andso the healthy cells, especially the oral mucosa, tend to bedamaged. As a result, most patients first experience oral painor dry mouth, followed by oral mucositis.18

Given these reasons, dry mouth was also reported as themost frequent symptom during the first 7 days afterchemotherapy administration. In contrast, Collins and associates15found that problems with urination was the most frequentsymptom in adolescents who were receiving chemotherapyand those who were off treatment, while this study consistedonly of adolescents who were receiving treatment. Therefore,the symptoms were differently perceived by both groups.

In terms of symptom severity, the mean rating of symptomseverity was 0.62 which was similar to Baggott and associates7;0.7. Swelling of the arms or legs was reported as the mostsevere symptom. Most of the chemotherapy agents which theparticipants received were administered intravenously, whichinvolves receiving a large volume of fluid. Most of them werealso given hydration, prior to the administration of theirchemotherapy. Therefore, many of the participants experiencedswelling at arms and/or their legs. Furthermore, inactivityduring hospitalization is another possible reason for experiencingswelling.

In regard to symptom distress, the mean rating was 0.40.Changes in the way food tastes was rated as the most distressingsymptom. Besides methotrexate, vincristine and cyclophosphamidewere given most often to participants. Vincristinedamages several cranial nerves and can lead to changes in aperson’s swallowing and tongue movements, usually leadingto altered taste sensations. Cyclophosphamide also interfereswith the glossopharyngeal nerve, leading to altered perceptionsof taste among patients.19 Patients, consequently, are not ableto eat or drink as usual. In addition, most Thai culinary dishesinvolve a taste combination of sweet, sour, and salt. Therefore,experiencing taste alterations while receiving cancer treatmentcould contribute to loss of appetite, weight loss, and malnutritionwhich can affect the effectiveness of cancer treatments. Thisis why participants perceived changes in food taste as theirmost distressing symptom

Quality of Life (QOL)

According to the results, the participants reported anaverage overall QOL score of 72.09, indicating a high QOL.This was similar to the study done on children in Thailandwith chronic health conditions; 72.7.17 In terms of the subscales,they had a high average QOL, according to social, emotional,school, and physical functioning.

Social functioning was rated with the highest average score(84), showing that these participants had the ability to get alongwith others and to keep contact with their friends. Most ofthem had to stop attending school during their treatments.However, due to the modern technologies of various forms ofsocial networking, the adolescents tended to have the opportunityto keep in contact with their relatives and friends. Therefore,they did not feel different from their healthy friends in termsof social interaction, as shown by their high scores of QOL inthe area of social functioning. In the same way, there was nodifference in this regard for both patients and healthy groups.7,17

The participants reported emotional functioning with anaverage score of 77.4. This can be explained by some aspectsof Thai culture. That is, Thai parents usually encourage theirchildren, using both words and various activities, so that theseparticipants are able to cope with the unpleasant experiencesof both the progression of their disease and the side effects oftheir cancer treatments. Consequently, most of them felt thatthey had not been abandoned to fight cancer alone.20

Adversely, these participants had a low QOL in schoolfunctioning, with an average score of 68.4. Most of them hadstopped attending school during their treatment, causing themto fall behind academically. There was a significant differencebetween the QOL in this area among healthy Thai children andthose with chronic health conditions.17 Likewise, Sandebergand colleagues21 found that those children who did not attendschool while receiving cancer treatment reported a low QOL.The physical functioning obtained the lowest scores amongthese participants, with a mean score of 63.63. This is consistentwith the results of Baggott and team.7

Experiencing symptoms simultaneously forced theparticipants to confront unpleasant physical problems.Consequently, they were not able to perform many activitiesof daily life, thereby leading to a lower QOL. Also, Thai childrenwith chronic health conditions generally had lower scores inthe area of physical functioning than healthy children.17

Relationship between Symptom Experiences and QOL

This study shows that the symptom experiences of adolescentswith cancer (the number of symptoms experienced, symptomseverity, and symptom distress) negatively correlate with theiroverall QOL. This was congruent with the findings of previousstudies.5,7

The number of experienced symptoms had a significantnegative correlation with overall QOL. Experiencing severalsymptoms simultaneously can result in patients being unableto perform daily activities, leading to a low QOL in all areas.In a study conducted by Baggott and associates,7 adolescentswith cancer, while they were receiving treatments, experiencedmore symptoms and reported a lower total QOL, as comparedto those who had fewer symptoms.

Severity of symptoms negatively correlated with QOL, ata significant level of 0.05. The intensity of symptoms perceivedby adolescents with cancer is likely to increase when theyexperience multiple symptoms at the same time with theaccompanying impact on their QOL. This finding was congruentwith several previous studies.5,7

Symptom distress was also found to have a significantnegative correlation with QOL. This is, because, during theircancer treatment regimens, adolescents with cancer generallyexperience various symptoms concurrently, and these cooccurringsymptoms catalyze each other and, thus, tend tocontribute to a low QOL. Similarly, in the study done by Baggottand associates7, most adolescents with cancer also reportedthat distressing symptoms affected their levels of QOL.Moreover, Hinds and associates also discovered that the degreeof symptom distress could predict the QOL among childrenand adolescents who had either acute myeloid leukemia orosteosarcoma.8

Symptom experiences and QOL in adolescents with cancerafter receiving at least one cycle of chemotherapy showsspecific differences in every dimension of each symptom.Therefore nurses are advised to assess every dimension of eachsymptom during chemotherapy for both inpatients andoutpatients to ensure better QOL.

The authors would like to thank all of the participants, whowere the most important part of this successful study. Also,they would like to express their deepest appreciation to all ofthe staff at the pediatric oncology clinics of RamathibodiHospital for their cooperation in the data collection.