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 »  Abstract
 » Introduction
 »  Materials and Me...
 » Results
 » Discussion
 » Conclusion
 » Acknowledgments
 »  References
 »  Article Tables

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Table of Contents 
ORIGINAL ARTICLE
Year : 2012  |  Volume : 18  |  Issue : 3  |  Page : 196-201

Clinical audit on "Evaluation of special issues in adolescents with cancer treated in an adult cancer setting": An Indian experience


1 Department of Integrative Oncology, Bangalore Institute of Oncology-Health Care Global Enterprise, Sampangiram Nagar, Bangalore, India
2 Department of Community Health Nursing Manipal College of Nursing, Manipal, Karnataka, India

Date of Web Publication8-Jan-2013

Correspondence Address:
Naveen S Salins
Department of Integrative Oncology, Bangalore Institute of Oncology-Health Care Global Enterprise, Sampangiram Nagar, Bangalore
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0973-1075.105690

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 » Abstract 

Background: Adolescents with cancer form a distinct group with special care needs. These patients are often cared in an adult supportive care setting where the special needs of adolescents are not met.
Aim: To identify special issues in adolescents with cancer and to determine whether special needs of adolescents are met in an adult cancer setting
Materials and Methods: 10 adolescents with cancer were randomly chosen and retrospectively studied for physical, psychoscocial and emotional issues using an internally validated tool.
Results: Pain was the most common physical symptom seen in all 10 patients. 3 out of 10 patients were involved in decision making, 3 out of 10 patients had identity issues and 4 out of 10 patients had peer group isolation issues. Only 3 were aware of diagnosis and none were aware of treatment outcomes and mortality. 4 out of 10 had anxiety and depression and 3 out of 10 had body image issues. Sexuality, spiritual and existential issues were not explored in any of the patients studied.
Conclusion: The outcomes of the study were in an adult oncology setting there was a poor recognition of key adolescent issues such as sexuality, body image, identity and peer group isolation. The psychosocial supports to these adolescents were minimal and spiritual and existential issues were not explored. The inferences drawn from this study suggested a need for multidisciplinary team approach oriented in handling adolescent care needs and preferably to have a dedicated space that will help the peer group to interact, bond and cope better with the illness.


Keywords: Adolescents, Cancer, Supportive care


How to cite this article:
Salins NS, Vallath N, Varkey P, Ranganath K, Nayak MG. Clinical audit on "Evaluation of special issues in adolescents with cancer treated in an adult cancer setting": An Indian experience. Indian J Palliat Care 2012;18:196-201

How to cite this URL:
Salins NS, Vallath N, Varkey P, Ranganath K, Nayak MG. Clinical audit on "Evaluation of special issues in adolescents with cancer treated in an adult cancer setting": An Indian experience. Indian J Palliat Care [serial online] 2012 [cited 2019 Jun 20];18:196-201. Available from: http://www.jpalliativecare.com/text.asp?2012/18/3/196/105690



 » Introduction Top


Cancer is the leading cause of death by disease in the adolescent population. As the primary goal of treatment in adolescent population is almost always cure, the aspects such as symptom relief and quality of life are usually overlooked. Adolescents and young adults with cancer are a heterogeneous group, and management of this special group requires a broad-based interdisciplinary clinical team, which should include physicians oriented towards managing adolescent patients, specialist nurses, psychooncologists, and specially trained social workers. Adolescents with cancer have unique developmental, physical, and emotional needs, which are different when compared to adults with cancer. Due to overbearing presence and involvement of the family in a protective manner, communications of these needs are usually impeded. Most of the cancer care units are designed for adults, and they are not geared up to meet the supportive care needs of the adolescents. [1],[2],[3]

The purpose of this audit was to evaluate and identify special issues in adolescents with cancer and to determine whether these special needs of adolescent patients are met in an adult cancer setting. The study helps us to identify the gaps in care provision and suggests measures to bridge these gaps. The study provides baseline information about the diagnosis; clinical history, symptomatology, psychosocial issues, outcomes, and end of life care issues.

Aim

The aims of this audit are as follows:

  1. to identify special issues in adolescents with cancer, and
  2. to determine whether special needs of adolescents are met in an adult cancer setting.

 » Materials and Methods Top


Design

This audit was a retrospective study of 10 adolescent patients randomly selected between January 2011 to December 2012 referred to the Department of Integrative Oncology, HCG Bangalore Institute of Oncology for symptom control and ongoing supportive care. Inclusion criteria are age between 10 and 19 years, the presence of malignancy, and at least three hospital visits.

Study

All patient case notes were delivered from the Medical Records Department, and the auditors completed the audit in multiple sitting, having access to an Integrative Oncology Specialist for complex entries. The data were processed and tabulated using Microsoft Excel.


 » Results Top


Among the 10 adolescents studied, there were 5 boys and 5 girls. Mean age was 13.2 years; the minimum age being 10 years and the maximum age was 16 years. Eight were school going, and two had discontinued schooling. Active parental involvement in care provision was seen in all cases studied, active sibling involvement in 8 out of 10 cases, and active grandparent involvement was seen in only 3 out of 10 cases.

Sarcoma was the diagnosis in 7 out of 10 cases studied, 2 were hematological malignancies, and 1 was a nasopharyngeal cancer. Three cases each were referred to integrative oncology by pediatric oncology and orthopedic oncology. Two cases each were referred by medical oncology and radiation oncology. Seven out of 10 cases were referred for management of pain; other three were referred for management of dyspnea, malignant wound care, and for ongoing supportive care, respectively. Among the 10 cases referred, 6 had already completed all disease-specific treatments and 4 were still undergoing disease-specific therapy.

On initial assessment, pain was the most common symptom noticed; seen in all of the 10 patients referred. Constipation in five cases, dyspnea in three cases, nausea and vomiting in two cases, and delirium was seen in one case.

In only 3 of 10 cases studied, there was evidence to suggest that the patient was involved in the care process and decision making. Identity issues were noticed in three cases, and peer group isolation was noticed in four cases; in rest of the cases, these issues were not explored. Three were aware of the diagnosis, but none was aware of outcomes and mortality. Anxiety and depression were noted in four cases. Body image issues were noticed in three cases, and in six cases, these issues were not explored. Sexuality issues were not explored in any of the cases studied [Table 1].
Table 1: Analysis of Psychosocial Issues in Adolescent age group

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Most of the adolescents (8 out of 10) received continued support and care from the family. Disjointed family circumstances were noticed in two of the cases, and an issue of sibling rivalry was noted in one case. Spiritual and existential issues were not explored in the cases studied.

Among the 10 cases referred, 5 of them died, 3 are in remission, 1 patient is undergoing active disease-specific treatment, and 1 has progressive disease who is under ongoing supportive care follow-up. Out of the five patients who died, three died in the hospital and two at home. Do not resuscitate (DNR) orders were documented in all the patients who died in the hospital, and two of them were initiated under end of life care pathway (EoLCP - an Indian modification of Liverpool care pathway of dying). Of all, the hospital death intractable dyspnea were the major end of life symptom and two needed escalating doses of opioids and benzodiazepines for symptom relief. Among the two that died at home, one had major bleed and in other the terminal event is unknown.


 » Discussion Top


Cancer in adolescence presents with diverse issues such as (a) unique epidemiology of disease presentation in the adolescence, (b) unique developmental tasks of adolescence related to physical and psychological maturation, and (c) unique area of health care provision in those group of patients who are not yet adults, but no long are children. [4]

Developmental stage

Developmental stage has major effects across all domains of life. It influences our cognitive capabilities, comprehension of events, communication skills, problem-solving abilities, relationships, expectations, self-esteem, emotional stability, psychological strength, and coping skills. [5]

Adolescents with cancer will be achieving their developmental milestones in the midst of dealing with the stress of cancer and cancer treatment. Adolescence is the period of achieving autonomy, identity, self-discovery, developing own beliefs and values, and dreams and goals for the future along with pubertal changes and sexual growth. It is the time when an adolescents experience physical changes, body growth, and spurt of varied emotions. During illness such as cancer, it is difficult for the adolescent to achieve these milestones.

Physical changes due to cancer, cancer-related therapy, low counts, need for continuous physical and emotional support, overbearing presence of the family, changes in living circumstances, i.e., resting at home, and prolonged periods of hospitalization lead to major disruption in the life of an adolescent. The normalcy of home-school-playground is replaced by the home-hospital pattern leading to isolation from the peers, poor acceptance by the friends and teachers at school, always looked upon as a sick child leading to feelings of loneliness and despair which can further lead to depression.

The study by Cassano et al., (2008) which evaluated the perceptions of adolescents with cancer demonstrated that adolescents with cancer need to feel like normal teenagers and they want to have typical normal teenager experiences in the midst of their cancer treatment. Adolescents with cancer could gain support by sharing information on their own terms with other peers who will understand. The study also highlights the value in adolescents with cancer engaging in discussion about cancer with others who can truly relate to their experiences. Adolescents with cancer in hospitals or community want to be treated as teenagers first and cancer patients second. [6]

The adolescents based on the age distribution are classified as early, mid, and late adolescence, and they differ in their ability to perceive and cope with a life limiting illness [Table 2]. [7],[8]
Table 2: Classification of Adolescents

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The usual fears are related to loss of control, altered body image, and separation from peers, which could be dealt by providing control, involvement in treatment and related decision making, facilitating communication, facilitating normal environment, and facilitating social and psychological support.

The grief symptoms in adolescents are classified as follows: [9] [Table 3]
Table 3: Manifestations of grief in adolescent age group

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Encouraging participation in spiritual rituals, maintaining continued participation and contact with religious peer groups, and honest discussion of "God questions" and existential questions can prevent these distresses.

The other special issues seen in adolescents with cancer are as follows:

  1. Loss of independence [Table 4]
  2. Loss of peer group identification
  3. Sexual development and physical needs
Table 4: Types of dependance noted in adolescent age groups - Citations provided in the text

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In this audit, the major gaps in care provision were given as follows: (A) Inability of the health care professionals and the team to identify and explore key issues such as sexuality, body image, and identity issues. (B) Peer group isolation as a major stressor was not acknowledged. (C) Among four patients who were diagnosed to have depression, only one had involvement of the psychooncologist and received pharmacotherapy. (D) Among the 10 cases studied in the audit, only 3 were directly managed by pediatric oncologists and the rest were managed by adult oncologists with minimal pediatric input. (E) Almost all were managed in adult wards with other adult patients. (F) The nurses looking after these patients were general nurses without any specialist pediatric training or skills. (G) Minimal involvement of the social work team interacting with the disjointed families and siblings with issues. (H) Spiritual and existential issues were not addressed in any of the patients studied. (I) No involvement of complimentary and alternative medicine such as art therapist, yoga teacher, etc.

Transition of care

Not valuing the time left

In adolescents with cancer, generally 70% of the patients do well with treatment and 30% do not. In those patients who do not respond to treatment or are having progressive disease on treatment, it is important to "know when to stop treatment." More patients are dying in ICU and hospitals due to reactive decisions instead of normal or natural decision making.

Not knowing what to expect

Inaccurate and unrealistic prognostication, physician optimism about outcomes of treatment, unexpected shortening of curative phase, prolonged palliative phase, shifting of focus and goals of care due to multiple clinical inputs, lack of honest and effective communication, lack of clarity about treatment and treatment outcomes, and lingering uncertainties leads to diminished decision-making ability by the families.

Need to do feel safe and secure

Being good parents some times is perceived as doing everything they can than doing what is best for the child. Sometimes, it is a collective family decision with involvement of grandparents, uncles, etc., and parents may not consider decisions such as stopping treatment, accepting palliative care, not for resuscitation, end of life care for the fear of being perceived by rest of the family as uncaring parents. With regard to communication issues, a great deal of collusion exists, as parents would not want their child to know about the diagnosis or clinical outcomes. This usually stems from love and overbearing protection.

Not having a bridged transition of care from pediatric to adult cancer care

In a conventional cancer setting until late adolescence, the patients are followed up under pediatrics and sometimes they are transferred to adult service quite abruptly on the basis of age criteria. This could result in gaps in medical supervision, adult service unprepared or ill informed to accept a young adult from the pediatric service, and lack of trust and stress in the person transferred. [9],[10],[11]

Care process

Two UK-trained pediatric oncologists who are currently practicing in a tertiary cancer hospital in India were interviewed with regard to difficulties noted in the process of caring an adolescent with cancer and barriers observed in providing a good oncological care to an adolescent with cancer.

Following were the issues noted:

  1. Unique disease epidemiology
  2. Less cancer protocols specific to adolescent population
  3. Lack of Indian data and Indian cancer care protocols for adolescent population
  4. Diagnosis not revealed to the adolescent and existence of collusion
  5. Competence aspect of adolescent not considered - treated like a child and not involved in treatment-related decision making
  6. Legally considered as a minor in an Indian setting
  7. Stigma of cancer-complete social and peer group isolation by the family
  8. Abrupt stopping of schooling and education
  9. Lack of rehabilitation for the cancer survivors
  10. Lack of sibling support due to the concentrated approach by the parents toward the patient
They felt that outcomes will be better if there is an improved communication, adolescents aware of the disease process and participate in treatment-related decision making, more involvement of the school and teachers in the overall care, and encourage social participation with the family and peer group. They also felt that there is a need to have Indian studies and protocols for the adolescent population as biology of Indian patients differ when compared to the western population. There is also a need for structured rehabilitation program for an adolescent cancer survivor.

End of life care

Some parents never give up hope for a miracle and can never stop aggressive therapies. Many patients who die of progressive disease still die after receiving aggressive medical therapy. The decision to stop cancer chemotherapy is difficult, but with progression of disease or relapses, families need to know that the chance for cure lessens. All options, including aggressive therapy, palliative therapies, and supportive care, should be presented to the family.

End of life care in an adolescent population usually involves intensification of ongoing supportive care treatment in the form of higher doses of medications given more frequently. It is important to guide the parents honestly through the dying process of their child. It involves accurate prognostication, anticipating their needs, answering questions, and to have a discussed documented communication in place which is flexible for changing clinical situation of the child. It is important to discuss with the parents the site of death and provide support system accordingly. [12]

Three patients who were studied in this audit died in the hospital, and two were initiated on end of life care pathway. Intractable respiratory distress was seen in all three patients needing palliative sedation. Palliative sedation in an adolescent population presents with its on conundrums and which is at times ethically and medically challenging. However, these patients required gradual titration of opioids and benzodiazepines to a point of sedation to relieve respiratory distress. The intent was only to relieve the distress of breathing, and the inadvertent effect was sedation. In all the three patients, family were involved in the process of decision making and the DNR was documented. In the bereavement phase, the parents and grandparents were interviewed and they were satisfied and comfortable with the process of end of life care provided.

The death of one's child is a deep and enduring grief. Four phases of grief are thought to be common among parents of children with fatal illnesses: (1) bereavement at the time of initial diagnosis, (2) integration, (3) renewed bereavement as curative options are exhausted and death approaches, and (4) postdeath mourning. Grief symptoms are manifest throughout all of these phases.

Grief and burnout are common among clinician's caring for adolescents with life-limiting illness, which often leads to compassion fatigue, lower frustration tolerance, dread of caregiving, diminished sense of purpose, depression and loss of hope, diminished capacity to listen, communication failure, and loss of confidence.


 » Conclusion Top


Inferences drawn from the audit were as follows:

  1. Need to have a separate dedicated space when managing adolescents with cancer as it will facilitate peer group formation within the hospital and enables fair allocation of trained and skilled nurses to single work environment which could further enhance knowledge and skills in adolescent medicine.
  2. Oncologists looking after adolescents need to have orientation and training. There is a greater need for attention to the psychosocial elements when dealing with adolescents with cancer.
  3. Need for a multidisciplinary team approach which along with primary care doctors and nurses to involve supportive care physicians, psychooncologists, art therapist, yoga teachers, chaplains, and school teachers whenever relevant.

 » Acknowledgments Top


The authors would like to thank Dr. Intezar Mehendi, Pediatric Oncologist, HCG, Bangalore, Dr. C. P. Raghuram, Pediatric Oncologist, HCG, Bangalore, and Dr. Pramod, Orthopedic Oncologist, HCG, Bangalore for their support.

 
 » References Top

1.Bell CJ, Skiles J, Pradhan K, Champion VL. End of life experiences in adolescents dying with cancer. Support Care Cancer 2010;18:827-35.  Back to cited text no. 1
[PUBMED]    
2.Cohen-Gogo S, Marioni G, Laurent S, Gaspar N, Semeraro M, Gabolde M, et al. End of life care in adolescents and young adults with cancer: Experience of the adolescent unit of the Institute Gustave Roussy. Eur J Cancer 2011;47:2735-41.  Back to cited text no. 2
[PUBMED]    
3.Wein S, Pery S, Zer A. Role of palliative care in adolescent and young adult oncology. J Clin Oncol 2010;28:4819-24.  Back to cited text no. 3
[PUBMED]    
4.Michelagnoli M, Viner RM. Commentary in Paediatric Update. Eur J Cancer 2001;37:1999-2002.  Back to cited text no. 4
    
5.Palmer S, Mitchell A, Thompson K, Sexton M. Unmet needs among adolescent cancer patients: A pilot study. Palliat Support Care 2007;5:127-34.  Back to cited text no. 5
[PUBMED]    
6.Cassano J, Nagel K, O'Mara L. Talking with others who "just know": Perceptions of adolescents with cancer who participate in a teen group. J Pediatr Oncol Nurs 2008;25:193-9.  Back to cited text no. 6
[PUBMED]    
7.Gibbons MB. Hospice care for children. New York: Oxford University Press; 1993.  Back to cited text no. 7
    
8.Friedman SB, Fisger MM, Shonberg SK. Comprehensive adolescent health care. 2 nd ed. St Louis: Mosby; 1998.  Back to cited text no. 8
    
9.Hinds PS, Oakes LL, Hicks J, Anghelescu DL. End of life care for children and adolescents. Semin Oncol Nurs 2005;21:53-62.  Back to cited text no. 9
[PUBMED]    
10.Hannan J, Gibson F. Advanced cancer in children: How parents decide on final place of care for their dying child. Int J Palliat Nurs 2005;11:284-92.  Back to cited text no. 10
[PUBMED]    
11.Viner R. Bridging the gapstransition for young people with cancer. Eur J Cancer 2003;39:2684-7.  Back to cited text no. 11
[PUBMED]    
12.Young D, Ruymann FB. Variables influencing end-of-life care in children. Eur J Paediatr 2001;23:481-6.  Back to cited text no. 12
[PUBMED]    



 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4]



 

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