THE IMPACT OF A CANCER DIAGNOSIS AND TREATMENT
"I lost my manners after cancer."
—9 year old, posttreatment, juvenile pilocytic astrocytoma
A diagnosis of cancer is universally distressing, and most people have impaired daily functions during the first weeks after diagnosis. Most persons adjust independently of professional mental health services and report mastery over the challenges associated with diagnosis and treatment, although some (1–13%) develop a mental illness, mostly depression and anxiety disorders, and about one fourth of those diagnosed with cancer (20–25%) need a targeted intervention to foster adjustment.1
Children and adolescents treated with cell therapy transplantation oftentimes have had long-term illness (congenital, relapsed cancer), a guarded prognosis, stressful treatment regimen, and significant late effects. Phipps et al2 found that even before transplantation, patients had compromised health-related quality of life. Although health-related quality of life may improve with the health gains after transplantation,3 samples of long-term survivors have either compromised health-related quality of life4 or developmental differences such as less autonomy, more dependence on parents, and less risk-taking behavior, for example, substance abuse and gambling.5
Children with bone marrow failure syndromes (BMFS) are oftentimes treated in the same centers as children with cancer. They frequent outpatient clinics and have daily behavioral and medical prescriptions. Many are chronically ill, have medical restrictions, and are disabled. Calaminus et al6 reported that children with BMFS have more emotional concerns than healthy controls and young adult cancer patients (>18 years of age) and an overall impaired quality of life.
Identifying those who need professional mental health services is one goal for those providing services to the pediatric cancer patient and the family. Methods for identifying patients in need of mental health services include questionnaire and interview. Structured, paper–pencil screening questionnaires, such as the PAT-2,7 and quality of life measures (eg, Varni's PedsQL Cancer Specific and Fatigue modules8,9,10) may be utilized for this purpose. Each consists of multiple items and domains of assessment. The PedsQL modules have parallel forms for both patient and parent report. Interviewing the patient and parent may be equally as helpful. The questions can be symptom based, such as the following from the Memorial Symptom Assessment Scale11:
Did you feel sad yesterday or today?
Did you feel worried yesterday or today?
Did you have trouble going to sleep the last two nights?
Interview questions may explore normal aspects of daily living, for example, How is school? … social life?12 Adjustment-to-illness questions have been proposed by Mack and Wolfe13:
What concerns you most about your/your child's illness?
What is your understanding of what is ahead for you/your child?
As you think about your/your child's illness, what are your hopes?
As you think about your/your child's illness, what are your worries?
As you think about your/your child's illness, what is the most important ...