Journal List > Asian Oncol Nurs > v.15(4) > 1081850

Lim: Health-related Needs and Quality of Life in Childhood Cancer Survivors

Abstract

Purpose

The purpose of this study was to identify the health-related needs and quality of life in childhood cancer survivors and to identify the relationship between health-related needs and quality of life.

Methods

Data were collected from April 11 to May 30, 2014. The participants aged 18~35 years diagnosed with a childhood cancer had completed actual treatment (surgery, chemotherapy, or radiation therapy) at least two years earlier. They were randomly selected from among childhood cancer survivors under follow-up management after cancer treatment at three general hospitals in Korea. Descriptive statistics, t-tests, one-way ANOVA, the post-hoc Scheffé test, and Pearson's correlation coefficients were used to analyze the data.

Results

Among the 371 participants, 214 (57.7%) were male and the mean age was 22.5 years. The mean score for health-related needs was 2.72 out of 5. Positive self-motivation need had the highest mean score of domain. The mean score for quality of life was 5.92 out of 10. Health-related needs and quality of life were negatively correlated (r= - .70, p<.001).

Conclusion

Health-related needs of childhood cancer survivors should be regularly assessed to meet their needs and improve the quality of life of childhood cancer survivors.

Figures and Tables

Table 1

Health-related Needs (N=371)

aon-15-246-i001
Domain Item M±SD
Total (41 items) 2.72 ± 0.78
Physical Total (5 items) 2.34 ± 0.94
01. Difficulty in concentrating 2.11 ± 1.24
02. Memory decline 2.40 ± 1.36
03. Difficulty in performing work 2.18 ± 1.23
04. Physical limitation 2.76 ± 1.37
05. Lack of energy & Fatigue 2.24 ± 1.07
Informational & health care system Total (11 items) 3.22 ± 1.02
06. Information about follow-up care 3.13 ± 1.36
07. Information about cancer recurrence 3.26 ± 1.39
08. Information about potential late-effects 3.22 ± 1.39
09. Various type of given information 3.16 ± 1.34
10. Information about what causes cancer 3.48 ± 1.39
11. Information about infertility 3.48 ± 1.33
12. Advice about nutrition and diet 3.37 ± 1.32
13. Comfortable mind 3.01 ± 1.48
14. Comprehensive health system 3.08 ± 1.31
15. Having health Professional who care me exclusively 2.96 ± 1.32
16. Health Professionals who have time to discuss issues 3.29 ± 1.24
Psychological Total (5 items) 2.27 ± 0.98
17. Difficulty in interacting with friends 1.83 ± 1.12
18. Feeling down or depressed 2.26 ± 1.29
19. Feeling loss of control over life 1.93 ± 1.25
20. Coping with changes to lifestyle 2.85 ± 1.35
21. Uncertainty about the future 2.49 ± 1.42
Social Total (4 items) 2.22 ± 0.92
22. Changes in the way others see me 2.16 ± 1.22
23. Talking to other people about cancer history 2.09 ± 1.30
24. Alcohol, tobacco, coffee etc 1.93 ± 1.25
25. Accepting changes in my appearance 2.69 ± 1.51
Cancer related psychosocial support Total (6 items) 2.18 ± 0.90
26 Physical disability concerns 2.77 ± 1.37
27 Recurrence concerns 2.47 ± 1.34
28 Fears about pain 2.07 ± 1.28
29 Counseling with health professionals 2.40 ± 1.28
30 Change of role within family 1.81 ± 1.12
31 Sexual dysfunction 1.53 ± 1.07
Financial support Total (4 items) 2.92 ± 1.02
32 Financial concern 3.13 ± 1.36
33 Extra expenses concern 3.25 ± 1.47
34 Difficulty in getting job 2.38 ± 1.40
35 Difficulty in insurance 3.64 ± 1.39
Positive selfmotivation need Total (6 items) 3.23 ± 1.00
36 Communication with survivors 3.12 ± 1.38
37 Opportunity to meet mentor 3.07 ± 1.44
38 Finding meaning in cancer experience 3.28 ± 1.42
39. Maintaining a positive outlook 3.14 ± 1.39
40. Opportunity to help other childhood cancer patients 3.64 ± 1.23
41 Transition to adult healthcare 3.13 ± 1.36
Table 2

Quality of Life (N=371)

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Domain Item M ± SD
Total (41items) 5.92 ± 1.36
Physical Total (8 items) 7.38 ± 1.70
1. Fatigue 5.10 ± 2.81
2. Appetite changes 7.48 ± 2.87
3. Aches or pain 7.97 ± 2.52
4. Sleep changes 7.24 ± 3.01
5. Constipation 8.23 ± 2.70
6. Nausea 9.20 ± 1.71
7. Menstrual changes or fertility 7.86 ± 3.30
8. Rate your overall physical health 5.96 ± 2.15
Psychological Total (15 items) 5.68 ± 1.66
9. How difficult is it for you to cope today as a result of your disease and treatment? 7.24 ± 2.69
10. How good is your quality of life? 6.59 ± 2.11
11. How much happiness do you feel? 6.66 ± 2.29
12. To what degree do you feel like you are in control of things in your life? 6.20 ± 2.22
13. How satisfying is your life? 6.44 ± 2.27
14. How is your present ability to concentrate or to remember things? 5.77 ± 2.44
15. How useful do you feel? 7.13 ± 2.49
16. Has your illness or treatment caused changes in your appearance? 4.70 ± 3.53
17. Has your illness or treatment caused changes in your self concept (the way you see yourself)? 3.57 ± 2.82
How distressing were the following aspects of your illness and treatment?
18. Initial diagnosis 3.93 ± 3.57
19. Cancer treatment (chemotherapy,radiation surgery) 2.01 ± 2.35
20. Completion of treatment 5.65 ± 3.08
21. How much anxiety do you have? 6.24 ± 2.94
22. How much depression do you have? 6.70 ± 2.79
To what extent are you fearful of
23. Future diagnostic tests 6.14 ± 3.18
24. A second cancer 5.64 ± 3.54
25. Recurrence of your cancer 5.36 ± 3.59
26. Spreading (metastasis) of your cancer 6.23 ± 3.65
Social Total (8 items) 5.92 ± 1.90
27. How distressing has your illness been for your family? 3.09 ± 2.88
28. Is the amount of support you receive from others sufficient to meet your needs? 5.32 ± 2.89
29. Is your continuing health care interfering with your personal relationships? 7.60 ± 2.96
30. Is your sexuality impacted by your illness? 8.51 ± 2.71
31. To what degree has your illness and treatment interfered with your employment? 6.19 ± 3.33
32. To what degree has your illness and treatment interfered with your activities at home? 6.09 ± 3.17
33. How much isolation do you feel is caused by your illness? 6.25 ± 3.27
34. How much financial burden have you incurred as a result of your illness and treatment? 4.34 ± 3.31
Spiritual Total (6 items) 5.92 ± 1.36
35. How important to you is your participation in religious activities such as praying, going to church or temple? 3.22 ± 3.59
36. How important to you are other spiritual activities such as meditation and praying? 2.82 ± 3.32
37. How much has your spiritual life changed as a result of cancer diagnosis? 4.42 ± 3.38
38. How much uncertainty do you feel about your future? 5.21 ± 3.01
39. To what extent has your illness made positive changes in your life? 5.71 ± 2.83
40. Do you sense a purpose/mission for your life or a reason for being alive? 5.96 ± 2.89
Table 3

Difference in Health-related Needs and Quality of Life by Characteristics of Participants (N=371)

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Variables Categories n (%) Health-related needs Quality of life
M ± SD t or F (p) Scheffé M ± SD t or F (p) Scheffé
Gender Male 214 (57.7) 2.68 ± 0.77 - 1.03 (.304) 6.09 ± 1.30 2.71 (.007)
Female 157 (42.3) 2.77 ± 0.78 6.00 ± 1.41
Age (year) 18~25 307 (82.8) 2.70 ± 0.79 0.57 (.634) 5.96 ± 1.37 0.20 (.896)
26~30 47 (12.7) 2.83 ± 0.69 5.80 ± 1.30
31~35 12 (3.2) 2.85 ± 0.78 5.95 ± 1.42
36~40 5 (1.3) 2.58 ± 0.89 5.73 ± 1.55
M ± SD 22.50 ± 4.20
Marital status Married (living with partner) 13 (3.5) 2.71 ± 0.76 - 0.04 (.966) 5.96 ± 1.51 0.90 (.931)
Unmarried 358 (96.5) 2.72 ± 0.78 5.92 ± 1.36
Residence Metropolitan (capital) area 245 (66.0) 2.73 ± 0.77 0.30 (.739) 5.90 ± 1.35 1.25 (.287)
Province 123 (33.2) 2.71 ± 0.80 6.00 ± 1.36
Abroad 3 (0.8) 2.39 ± 1.02 4.79 ± 2.30
Religion Yes 204 (55.0) 2.77 ± 0.79 1.30 (.196) 6.02 ± 1.36 1.47 (.143)
No 167 (45.0) 2.66 ± 0.75 5.81 ± 1.36
Highest education ≤ Middle school graduate 37 (10.0) 2.81 ± 0.92 2.62 (.074) 5.95 ± 1.67 0.97 (.379)
High school graduate 202 (54.4) 2.63 ± 0.76 6.01 ± 1.38
≥ College/university graduate 132 (35.6) 2.82 ± 0.74 5.79 ± 1.24
Employment status Employed 322 (86.8) 2.67 ± 0.76 2.99 (.004) 6.03 ± 1.34 - 3.78 ( < .001)
Unemployed 49 (13.2) 3.03 ± 0.79 5.26 ± 1.32
Sexual activity Yes 95 (25.6) 2.81 ± 0.75 - 1.34 (.182) 5.86 ± 1.31 0.53 (.599)
No 276 (74.4) 2.69 ± 0.78 5.95 ± 1.38
Smoking Yes 33 (8.9) 3.05 ± 0.74 2.66 (.011) 5.45 ± 1.51 - 1.93 (.061)
No 338 (91.1) 2.69 ± 0.77 5.97 ± 1.34
Drinking Yes 219 (59.9) 2.67 ± 0.70 - 1.41 (.159) 5.95 ± 1.23 0.44 (.662)
No 152 (40.1) 2.79 ± 0.87 5.89 ± 1.54
Exercise Yes 292 (78.7) 2.70 ± 0.77 - 0.95 (.343) 5.98 ± 1.35 1.52 (.132)
No 79 (21.3) 2.79 ± 0.78 5.71 ± 1.40
Diagnosis Leukemiaa 145 (39.1) 2.56 ± 0.77 3.03 (.004)
a<b
6.12 ± 1.36 2.17 (.036)
a > b
Central nerve system tumorb 56 (15.1) 3.01 ± 0.84 5.51 ± 1.53
Lymphomac 68 (18.3) 2.82 ± 0.71 5.95 ± 1.21
Bone tumord 18 (4.9) 2.92 ± 0.68 5.35 ± 1.33
Ovary cancere 4 (1.1) 3.04 ± 0.60 6.86 ± 0.99
Neuroblastomaf 8 (2.2) 2.91 ± 0.89 5.39 ± 1.42
Soft tissue sarcomag 16 (4.3) 2.65 ± 0.83 5.93 ± 1.36
Othersh 56 (15.0) 2.51 ± 0.64 6.06 ± 1.28
Treatment types received Surgery only 8 (2.2) 2.25 ± 0.55 0.74 (.640) 6.87 ± 1.32 1.73 (.100)
Chemotherapy only 91 (24.5) 2.65 ± 0.74 6.17 ± 1.34
Surgery + Radiation 2 (0.5) 2.51 ± 0.41 6.26 ± 1.74
Surgery + Chemotherapy 57 (15.4) 2.69 ± 0.75 5.96 ± 1.40
Radiation + Chemotherapy 62 (16.7) 2.76 ± 0.82 5.82 ± 1.19
Surgery + Radiation + Chemotherapy 61 (16.4) 2.74 ± 0.80 5.90 ± 1.40
(Allo) Bone marrow transplant 86 (23.2) 2.81 ± 0.82 5.62 ± 1.43
Other 4 (1.1) 2.77 ± 0.37 6.24 ± 0.49
Late-effect Yes 202 (54.4) 2.94 ± 0.77 6.35 ( < .001) 5.43 ± 1.33 - 8.54 ( < .001)
No 169 (45.6) 2.45 ± 0.70 6.52 ± 1.14
Table 4

Correlation between Health-related Needs and Quality of Life

aon-15-246-i004
Variables Needs QOL Physical Psychological Social Spiritual
r (p) r (p) r (p) r (p) r (p) r (p)
Needs 1.00
QOL - .70 ( < .001) 1.00
 Physical - .50 ( < .001) .71 ( < .001) 1.00
 Psychological - .74 ( < .001) .92 ( < .001) .54 ( < .001) 1.00
 Social - .60 ( < .001) .78 ( < .001) .49 ( < .001) .67 ( < .001) 1.00
 Spiritual - .08 (.142) .49 ( < .001) .20 ( < .001) .28 ( < .001) .13 ( < .001) 1.00

QOL=Quality of life.

Notes

This work was supported by the Incheon Catholic University Research Grant of 2015.

References

1. National Cancer Information Center. Cancer Facts and Figures 2011. Accessed Jan 25, 2015. http://www.cancer.go.kr.
2. Ghim TT. Time to establish multidisciplinary childhood cancer survivorship programs in Korea. Korean J Hematol. 2010; 45(2):84–87.
crossref
3. Bhatia S, Landier W. Evaluating survivors of pediatric cancer. Cancer J. 2005; 11(4):340–354.
crossref
4. Prouty D, Ward-Smith P, Hutto CJ. The lived experience of adult survivors of childhood cancer. J Pediatr Oncol Nurs. 2006; 23(3):143–151.
crossref
5. Brown RT, Madan-Swain A, Lambert R. Posttraumatic stress symptoms in adolescent survivors of childhood cancer and their mothers. J Trauma Stress. 2003; 16(4):309–318.
crossref
6. Rourke MT, Hobbie WL, Schwartz L, Kazak AE. Posttraumatic stress disorder (PTSD) in young adult survivors of childhood cancer. Pediatr Blood Cancer. 2007; 49(2):177–182.
crossref
7. Kim MA, Yi J. Psychological distress in adolescent and young adult survivors of childhood cancer in Korea. J Pediatr Oncol Nurs. 2013; 30(2):99–108.
crossref
8. Mertens AC, Liu Q, Neglia JP, Wasilewski K, Leisenring W, Armstrong GT, et al. Cause-specific late mortality among 5-year survivors of childhood cancer: the Childhood Cancer Survivor Study. J Natl Cancer Inst. 2008; 100(19):1368–1379.
crossref
9. Reulen RC, Winter DL, Frobisher C, Lancashire ER, Stiller CA, Jenney ME, et al. Long-term cause-specific mortality among survivors of childhood cancer. JAMA. 2010; 304(2):172–179.
crossref
10. Rowland JH, Bellizzi KM. Cancer survivors and survivorship research: a reflection on today's successes and tomorrow's challenges. Hematol Oncol Clin North Am. 2008; 22(2):181–200.
crossref
11. Lim YT, Bae SN. Growth pattern in children of acute lymphoblastic leukemia during and after therapy. Korean J Pediatr Hematol Oncol. 2000; 7(1):50–56.
12. Jang PS, Shin HY, Ahn HS. Sexual development and reproductive function in male adults treated for childhood acute lymphoblastic leukemia or malignant lymphoma. Korean J Pediatr Hematol Oncol. 2002; 9(1):21–29.
13. Lee YJ, Kim YH, Hah JO. Prevalence of obesity and cardiovascular risk factors in survivors of childhood acute lymphoblastic leukemia. Korean J Pediatr Hematol Oncol. 2003; 10(2):198–205.
14. Han JW, Kwon SY, Won SC, Shin YJ, Ko JH, Lyu CJ. Comprehensive clinical follow-up of late effects in childhood cancer survivors shows the need for early and well-timed intervention. Ann Oncol. 2009; 20(7):1170–1177.
crossref
15. You MA. Content analysis on psychosocial adjustment of adolescent survivors of leukemia. J Korean Acad Child Health Nurs. 2006; 12(3):304–313.
16. Kim Y, Cha H, Kim C, Park Y, Kim H, Seo J, et al. Child cancer survivors' quality of life based on their parents' support and past history. J Korean Acad Psychiatr Ment Health Nurs. 2008; 17(1):85–96.
17. Kwon HJ, Kim YJ, Cha HG. Relationship of self-esteem and social support to depression in child cancer survivors. J Korean Acad Child Health Nurs. 2009; 15(2):219–227.
crossref
18. Park HJ, Nam BH, Yun YH, Yang WJ, Kang HJ, Shin HY, et al. Establishment of Korean childhood cancer survivor cohort and long-term follow-up system. Clin Pediatr Hematol Oncol. 2007; 14(1):1–42.
19. Kim MA, Yi Jh. Childhood Cancer Survivor's Services Needs for the Better Quality of Life. J Korean Acad Child Health Nurs. 2012; 18(1):19.
crossref
20. Rines AR, Montag ML. Nursing Concepts and Nursing Care. Am J Nurs. 1976; 76(11):1860.
crossref
21. Becknell EP, Smith DM. System of nursing practice: a clinical nursing assessment tool. Philadelphia: FA Davis Company;1975.
22. Lim SJ. Development of Health-related Need Scale for childhood cancer survivors [dissertation]. Seoul: Yonsei Univ.;2014.
23. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, et al. Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study. JAMA. 2003; 290(12):1583–1592.
crossref
24. Yoo SW, Shin H, Yeo MS, Jun H, Jang CH, Kim SH, et al. Prevalence of late effects by designed health promotion program in long-term survivors of childhood cancer. Clin Pediatr Hematol Oncol. 2012; 19(1):31–39.
25. Han JW, Kim HS, Kim BS, Kwon SY, Shin YJ, Kim SH, et al. Increasing and worsening late effects in childhood cancer survivors during follow-up. J Korean Med Sci. 2013; 28(5):755–762.
crossref
26. Clarke SA, Skinner R, Guest J, Darbyshire P, Cooper J, Vora A, et al. Clinical outcomes and health-related quality of life (HRQOL) following haemopoietic stem cell transplantation (HSCT) for paediatric leukaemia. Child Care Health Dev. 2011; 37(4):571–580.
crossref
27. Nagel K, Eves M, Waterhouse L, Alyman C, Posgate S, Jamieson J, et al. The development of an off-therapy needs questionnaire and protocol for survivors of childhood cancer. J Pediatr Oncol Nurs. 2002; 19(6):229–233.
crossref
28. Earle EA, Davies H, Greenfield D, Ross R, Eiser C. Follow-up care for childhood cancer survivors: a focus group analysis. Eur J Cancer. 2005; 41(18):2882–2886.
crossref
29. Hoven E, Lannering B, Gustafsson G, Boman KK. 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):4294–4303.
crossref
30. Hong SS, Park HR, Kim KS, Choi SH. Late effects, social adjustment, and quality of life in adolescent survivors of childhood leukemia. J Korean Acad Nurs. 2014; 44(1):55–63.
crossref
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