October 2009

Children, Adolescents and Young Adults:
A Review of Recent ARticles

An ESUN Feature

Elizabeth Goldstein-Rice

Coping With Cancer: A Web-Based Educational Program for Early and Middle Adolescents

An abstract of Susan O'Conner-Von's article in the Journal of Pediatric Oncology Nursing

One of a modern parent’s big worries is that their internet-savvy adolescent (13-17 years old) will find, and buy into, questionable answers to important questions on websites that don’t have their best interests in mind.  They agonize that their budding independents will accept the advice of a stranger rather than have difficult discussions with the caring adults in their lives.  Adolescence is the time of life when young folks prefer to do things on their own.  That includes looking for points of view that they aren’t exposed to in their normal, “boring” daily lives.  And in most cases, adults seem to be able to adequately monitor and guide internet usage so that problems with inaccurate, or even dangerous, information don’t get out of hand.

However, when that child browsing the web for the answers to the mysteries of life has been given a cancer diagnosis that not only turns their social lives upside-down, but also presents them with dismal 5 and 10-year survival statistics, the stakes are raised.  Adolescents with cancer may be particularly at risk of being misled by websites that present false claims, unproven statistics and forums that aren’t moderated by skilled professionals.

This young group of patients faces unique challenges in following a normal path to adulthood even as they’re experiencing the demoralizing combination of treatment-related pain, dread of that pain, sleep problems (caused by both medication and emotional distress), social isolation and persistent fatigue.  The author cites previous studies on the impact of cancer-related treatment on adolescent development, stating “For adolescents, current research suggests that they possess an increased vulnerability to the distress caused by symptoms (Linder, 2008). Unfortunately, this distress may make the adolescent “fight the treatment” rather than the cancer (Docherty, Sandelowski, & Preisser, 2006; Walker, Wells, Heiney, & Hymovich, 2002).”

This is the problem author Susan O’Conner-Van (PhD, RN, assistant professor in the  Center for Children with Special Health Care Needs, School of Nursing, University of Minnesota, and staff nurse at Children’s Hospitals and Clinics of Minnesota in St Paul, Minnesota) seeks to address in describing the purpose of a new website Coping with Cancer.  Knowledge and development of coping strategies are key to helping adolescents direct their energies in a positive direction during treatment and beyond.  In support of using the Internet as a tool in reaching this young population, she cites “a review of 420 computer-based educational programs, Lewis (1999) found the use of this type of technology associated with improved health outcomes, increased patient satisfaction, and fewer medical malpractice claims.”

In recognition that the internet has become a primary source of knowledge for many young people the author undertook to develop a website just for them.  The article describes the methodology used to devise and test several web formats that youths would be drawn to and find valuable in dealing with their disease.  The web-based programs were developed “in accordance with the recommendations from the Research Working Group meeting titled “Moving the Research Agenda Forward for Children with Cancer” (National Institutes of Health) and the State of the Science Summit II for Pediatric Oncology Nursing.”

O’Conner-Von describes the goals of the project from the nurse’s perspective: “Educating patients is a primary responsibility of all nurses; however, because of time constraints and staff shortages, pediatric oncology nurses are often unable to adequately prepare patients for cancer treatment.  Instead, patients frequently rely on the Internet as a source of information about cancer, some of which can be outdated and inaccurate. Adolescents regard the Internet as a valuable source of health information as it is easily accessible, less threatening, and confidential. Considering the need for accurate, readily available information for adolescents with cancer, the purpose of this study was to develop and validate an innovative, interactive Web-based educational program to prepare early and middle adolescents for cancer treatment. Titled “Coping With Cancer,” this program was developed by the investigator after conducting in-depth interviews of adolescent cancer survivors and their parents. Based on the transactional model of coping, the program focuses on enhancing the adolescent’s knowledge of cancer, cancer treatment, and healthy coping strategies. Coping With Cancer can be an effective resource for pediatric oncology nurses in providing ongoing education for adolescents with cancer.”

The resulting site is colorful, engaging and inspirational while delivering serious, much-needed information.  Best of all, the site was found to provide “a safe place” for teens looking for information, advice and encouragement.  One that their parents can trust, too!

References:

Docherty, S., Sandelowski, M., & Preisser, J. (2006). Three months in the symptom life of a teenage girl undergoing treatment for cancer. Research in Nursing and Health, 29, 294-310

Walker, C., Wells, L., Heiney, S., & Hymovich, D. (2002). Familycentered psychosocial care. In C. Baggott, K. Kelly, D. Fochtman, & G. Foley (Eds.), Nursing care of children and adolescents with cancer (pp. 365-390). Philadelphia: W. B. Saunders.

Lewis, D. (1999). Computer-based approaches to patient education: A review of the literature. Journal of the American Medical Information Association, 6, 272-282.

 

Decision-making by Adolescents and Parents of Children with Cancer Regarding Health Research Participation

What can be done to increase adolescent and young adult (AYA) participation in clinical trials?  Researchers from the United States and Canada decided to start by finding out why participation rates now are low.  This article from the American Academy of Pediatrics reports on the results of questionnaires distributed to cancer patients and their parents at cancer centers in Halifax, Vancouver and Montreal in Canada and in Atlanta and Memphis in the US.   Noting their desire to better understand why participation rates are so low for adolescent and AYA patients, the authors define the objectives of their study as an effort  "to determine some of the personal factors that may influence the decision of AYAs to participate in health care research and to describe whether these differ from values held by the parents of children with cancer."

The AYA population of the study reported loud and clear that time commitments are a big concern for them.  While parents were concerned about their children being made a “guinea pig”, this aspect of clinical trials and related health studies did not jump out as a big concern for AYA’s.  It’s also interesting to note that AYAs did not cite risk, distrust of medical advice or privacy concerns as reasons for not participating.   Some statistics that may be surprising follow:

When AYA’s DID opt to participate in a research study, the most common reasons were:
I thought it would help others                               67%
I thought it would help me                                    26%
I thought it would not add too much discomfort    19%
I felt pressure from my doctor to take part             19%

Parents making decisions regarding their children’s participation reflect the same values in regard to helping others (85%), helping their child (60%) and not causing discomfort (20%).  They also reported feeling pressure from the doctor (21%).  These results highlight the need to make sure patients and families understand the value of the studies they’re being asked to join, not only for themselves, but also the benefit to future generations. 

AYA’s top reasons for choosing NOT to participate:
Study required too much of my time                      45%
I had too much else to think about the time           36%
I did not think it would help me                             18%
Study required me to undergo increased discomfort        18%

Clearly, AYA’s have a lot on their minds during and after treatment.  The combination of time and mental energy required of a study accounts for a whopping 81% of the resistance to participation. 

On parental decisions not to allow their children to participate, the response was much vaguer.  The single largest reason for non-participation: Other (37%).  According to the authors “explanations in the ‘other’ category included not being ready to tell the child of the diagnosis, travel barriers, wanting the best proven treatment, and concerns derived from risk experience with previous research therapy.”

Key recommendations that come out of this article:

  1. “Research protocols should be designed to add minimal additional commitments beyond what is normally expected for clinical care, and this should be communicated effectively to patients and families.”  In other words, work with the patients existing treatment and follow-up schedule.  Allow the data needed for the trial to be collected during the times the patient is already being seen at the clinic.
  1. “Increasing global support for potential participants to assist in addressing other priorities, such as work, education, and family concerns, would seem important to allowing adequate consent and optimizing recruitment.”  Be prepared to deal with the day-to-day difficulties of the person you are trying to recruit.  Be mindful of their other commitments when setting up schedules.
  1. “Improving the understanding of research objectives and the potential impact of research on improving health outcomes may be very valuable for patients to decide in favor of participating in clinical trials.”  Altruism appears to be a strong motivator.  Recruiters can help by explaining the research and its goals in language that is easily understood without adding to the stress of AYA’s who already feel they have too much to deal with.
  1. Find ways to involve family and friends in the education and decision-making processes.  Both AYA’s and parents of children with cancer reported that their decisions were influenced by the people around them.  While there are always challenges in engaging the patient’s support systems outside the hospital setting, this was seen as important to overcoming barriers to patient participation.

The study was conducted by the following impressive array of North American research centers:

Dalhousie University, Halifax, Nova Scotia, Canada;
Cancer Care Nova Scotia,Halifax, Nova Scotia, Canada;
British Columbia’s Children’s Hospital, Vancouver, British Columbia, Canada;
Hospital Sainte-Justine, Montreal, Quebec,Canada;
Winship Cancer Institute, Emory University, Atlanta, Georgia;
Duke University Medical Center, Durham, North Carolina;
St Jude Children’s Research Hospital, Memphis,Tennessee;
Ottawa University, Ottawa, Ontario, Canada
University of Western Ontario, London, Ontario, Canada
Cleveland Clinic Foundation, Cleveland, Ohio

Performing surveys over such a wide geographic area helped to make sure the results aren’t overly influenced by local culture or values.  It also provided for racial and socioeconomic diversity amongst respondents and the results reflect that as well.

 

Cognitive and Problem Solving Training in Children with Cancer: A Pilot Project

J Pediatr Hematol Oncol 2009;31:670–677

The Background statement for this paper begins with the phrase “Neurocognitive sequelae”.  That’s enough to discourage many a casual medical researcher from reading further.  However, when broken down (see definitions below), it translates to what people familiar with the after effects of cancer treatment refer to simply as “chemo brain”.  So, if we substitute this commonly-used term for the scientific term, a friendlier version is produced: “[Chemo Brain is] among the most debilitating late effects experienced by survivors of childhood cancer, with far reaching consequences for educational, social, and adaptive development.”  Now that’s a statement readers can surely agree with!

Despite the fact that researchers estimate around one third of childhood cancer survivors have problems in school, both academically and socially, there haven’t been many reports of programs designed to address them.  In this paper, researchers from several institutions* (see below) describe a pilot “cognitive remediation program” (CRP) to test the effectiveness of five approaches to helping affected children overcome this disability, including

  1. Problem-solving skills
  2. Behavioral study skills
  3. Information-processing strategies
  4. Compensatory techniques
  5. Collaboration with parents and instructors

The authors describe the study, stating “we developed and pilot tested a brief, 15 session training program (approximately 20 child-training hours total) to teach problem-solving skills and compensatory strategies designed to improve daily problem solving, with emphasis on social and interpersonal situations, attention and memory functioning, and academic performance.”

Participation was limited, in part because of the many requirements, but also because the time commitment was more than some families could manage.  Ultimately, only twelve children completed the program.  Five tables in this paper describe the assessment mechanisms and standardized measures used, patient demographics and parent/child questionnaire results.  

The results were good.  According to the author, “With respect to efficacy of the current child-directed program on the child’s cognitive and behavioral functioning, virtually all performance scores showed gains from preintervention to postintervention in the expected positive direction.”  Unfortunately, and largely due to the small number of participants, few of the results could be considered statistically significant.   The author goes on to discuss the ways programs like this can be made more accessible to post-treatment families.  Some of the areas for improvement considered:

While the results of this study may not arm child patient advocates with the data needed to require schools to develop programs for children with neurocognitive problems due to cancer treatment, it does provide a good outline for a future program that could produce such data. 

*From the City of Hope National Medical Center and Beckman Research Institute, Duarte; Center for Cancer and Blood Disorders, Children’s Hospital Los Angeles and Keck School of Medicine, University of Southern California, Los Angeles; Jerry L. Pettis Memorial Veterans Administration Medical Center, Loma Linda, CA; and Hope Harbor Children’s Home and Academy, Claremore, OK.

Terms used:

 

Physical Activity and Childhood Cancer

The authors of this study begin by acknowledging the importance of physical activity (PA) in maintaining quality of life and in helping cancer survivors ward off additional health problems resulting from their cancer treatment.  The author notes “There is a strong need for encouraging patients to engage in PA during and after treatment in order to prevent severe detrimental effects”, noting also that most patients are capable of taking part in some form of PA, even though they aren’t in the best of shape.  This article is a review of the literature on the subject of “PA and exercise interventions in patients during tumor treatment and survivors of childhood cancer.”  The authors (Corinna Winter, MA, Carsten Müller, MA, Christiane Hoffmann, MD, Joachim Boos, MD and Dieter Rosenbaum, PhD) searched the PubMed and Medline databases, using carefully designed search terms to find programs relating to PA studies or physical fitness programs for patients in treatment for, or survivors of, childhood cancers.  Extensive analysis of the results is provided. 

The characteristics of the programs ultimately compared include: treatment phase; time since treatment; patient age; assessment method (self-report, accelerometry, actigraph, other) and type of disease.  The types of exercise programs used in the studies ranged from those that generally promote higher levels of activity integrated into the patient’s daily life to those that focused exclusively on the use of a specific exercise program.  Patient response was evaluated, according to the authors, “by examining patients’ functional capacity, strength, and functional mobility with established assessment tools. Furthermore, some studies investigated ankle range of motion, anthropometry, quality of life (QOL), fatigue, sleep, actual PA, steps per day, and bone mineral density.” 

The author’s analysis shows that there are proven benefits to PA.  There was no conclusive evidence as to which type of training is best, how strenuous or how frequent exercise should be at varying phases, and what type of supervision is recommended. The data does point to the need for the introduction and maintenance of physical activity programs to begin during cancer treatment and continue after therapy is completed.  There will be challenges in making these programs a success.  The authors point out that exercise programs will have to be individually tailored to the needs of the individuals.  Special efforts need to be made to reach out to adolescent and young adults (AYA) patients.  AYA patients may not have strong support systems.  They may need help with logistics, as well as social support, in order to get started with a PA program and stay motivated to continue it to achieve the full benefits.

The authors conclude: “In general, only a few studies investigated the topic of PA in pediatric cancer patients. However, this review was intended to provide an overview of research in this field and to underline the need and the possibilities for future research. Limited studies have reported sufficient PA in both pediatric patients during therapy and survivors of childhood cancer. Therefore, reduced PA appears to be a persisting problem.”

 

Cardiac or cardiopulmonary transplantation in childhood cancer survivors: An increasing need?
Levitt G et al., Cardiac or cardiopulmonary transplantation in childhood cancer survivors: An increasing need?, Eur J Cancer (2009), doi:10.1016/j.ejca.2009.08.006

Current therapies for treating childhood cancers using radiation and Anthracyclines have resulted in higher rates of survival.  However, they also carry the risk of irreversible cardiopulmonary damage.  Survivors of childhood cancer that caused heart damage have, however, met with resistance in seeking heart transplants.  In this study, researchers from the Great Ormond Street Hospital for Children and Childhood Cancer Research Group, University of Oxford of Oxford, England observe that, "Transplant centres have been reluctant to place patients with a history of malignant disease on the transplant list because of the theoretical risk of inducing relapse of the primary malignancy, increasing the risk of second malignant neoplasms and the interaction between immunosuppression-induced side-effects and other co-morbidities caused by the previous oncological treatment."

Working with records from the National Registry Childhood Tumours (NRCT) and United Kingdom Transplant registry (UKT), this group of researchers studied the data to determine whether having had cancer treatments really makes a difference in transplant outcomes.  They were also interested in the factors that could be used to predict whether a patient is likely to need a transplant. 

While this might not sound like terrific news to patients and their families, the researchers point out the significance of these numbers, stating “In our study the overall 5 year survival has been excellent at 74%. Both the 5 and 10 year survivals are in line with international results for patients undergoing paediatric cardiac transplantation for all causes.”

It is important for pediatric cancer patients that the research supports use of transplants as an appropriate therapy for survivors.  Caregivers and doctors of patients who fit the profile of the study group, and whose survival depends on the use of Anthracyclines or damaging radiation therapies, can use this information to plan for careful monitoring of cardiac function and make plans to address cardiac damage should it arise.

In regards to whether transplantation is a viable choice for childhood cancer survivors, the researchers conclude that it is, stating “Cardiac transplantation is a realistic option for cancer survivors, with survival rates comparable with those of other cardiac recipients. This study demonstrates that, over three decades, there has been an increased requirement for cardiac transplantation among childhood cancer survivors. Future planning for long term survivors needs to take this into account."

Terms Used:

 

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