Patient-Reported Outcomes in Psychological Treatment for an Adolescent Oncology Patient: A Case Report

Introduction

Adolescent and young adult (AYA) cancer patients demonstrate unique psychosocial needs as a result of the challenging developmental stage in which they have been diagnosed putting them at particular risk for the development of psychosocial difficulties, such as anxiety and low mood.^1,2 AYA patients experience a disruption at a time when they are establishing their independence and goals for their future lives, yet may require support from their social network and healthcare professionals to cope with the uncertainty and stress of their illness.^3,4 These challenges point to the need for psychosocial care that fosters independence and engagement, ⁵ while providing evidence-based strategies and support. ⁶

A group of tools that may be helpful in promoting independence that can be used in combination with evidence-based psychosocial treatment in AYA cancer patients are patient-reported outcomes (PROs). PROs are used to obtain a report of a patient's health or well-being that come directly from the patient and quantify the current level of distress or impairment associated with a disease or treatment. ⁷ When used routinely within the context of psychosocial intervention, PROs can assist in monitoring psychosocial well-being and quality of life, can motivate change through active patient participation and involvement, and provide the opportunity to discuss therapeutic progress. ⁸ Although the use of PROs in cancer clinics have been associated with improvements in the processes of care, limited research has demonstrated improvements in patient outcomes including quality of life. ⁹ The use of PROs during psychosocial treatment may be a promising way to document treatment response and engage AYA patients in discussions about their treatment progress. A case report using PROs in conjunction with an evidence-based psychosocial intervention (CBT or cognitive-behavior therapy) to track and monitor treatment progress is the first step in identifying whether this approach may be feasible and helpful for this population.

The goals of this case report of an adolescent female were (1) to describe the use of PROs in the context of psychosocial treatment after cancer diagnosis and (2) to discuss implications for clinical practice.

Presenting Concerns

“Sara” (a pseudonym) is a 16-year-old South Asian female who was referred to the psychologist by her oncologist for reported difficulties with anxiety, mood, and disease adjustment. She was diagnosed with an inflammatory myofibroblastic tumor in the left retroperitoneum 10 months before the referral and was missing school due to persistent worry about illness recurrence and school work, as well as low mood.

Clinical Findings

At the time of referral, Sara had been previously diagnosed by a psychiatrist with adjustment disorder, social anxiety disorder, and unspecified anxiety disorder and was taking 20 mg of citalopram daily (Fig. 1 for timeline). Sara's case was complicated by the diagnosis of a chronic condition called paraneoplastic pemphigus, which is hypothesized to be an immune response to the underlying tumor. Treatment involves heavy and prolonged immunosuppressive treatment to control and silence the paraneoplatic syndrome. At the time of her referral to psychology, Sara was receiving monthly infusions of immunosuppressive treatment lasting 4–5 hours. She was living with her mother, older brother, and younger sister. Her biological father was not involved in her life and her stepfather was working in a city several hours away. The family was financially strained and Sara had a difficult relationship with her stepfather. There was a family history of depression (paternal side) and schizophrenia (maternal side) and Sara had never received previous psychological treatment.

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FIG. 1.

Timeline of the patient's psychosocial treatment from April 2015 to August 2016. CBT, cognitive-behavior therapy.

Pretreatment Assessment

Sara was referred for an initial pretreatment psychology assessment to evaluate her current psychosocial difficulties. Information was gathered from Sara's medical chart, through a consultation with the psychiatry service who previously assessed her, consultation with her oncologist, and through an intake interview with Sara. No physical examination was conducted. The assessment and intervention were completed by a predoctoral psychology intern (final year of doctoral training) and supervised by a doctoral-level licensed clinical psychologist with >5 years of experience working with AYA patients in the oncology setting. Both the intern and the supervisor were experienced in the administration of CBT, interpersonal therapy approaches, and acceptance and commitment-based therapy.

At the intake appointment, clinical observations were that Sara had depressed mood, flat affect, and described persistent levels of anxiety in the past month. She reported feelings of sadness on a daily basis as well as difficulties with sleep onset and waking in the morning, which were contributing to a significant number of school absences. Overall, she described feelings of emptiness and anhedonia as well as anxiety about her school performance and social relationships. Sara described frequently feeling fatigued from her treatment and feeling too tired to spend time with friends after school or on the weekends. Many of her worries were related to school performance, getting into university, and the severity of her illness.

With regard to anxious and depressive symptoms, as part of the initial intake appointment, Sara completed the Children's Depression Inventory (CDI-2) ¹⁰ wherein her overall score was in the 99th percentile (T = 73), indicating very elevated levels of depressive symptoms. She denied active suicidal ideation or engaging in nonsuicidal self-injury, however did disclose passive suicidal ideation whereby she indicated wishing she was no longer alive. Sara also completed the Multidimensional Anxiety Scale for Children-Second Edition. ¹¹ Her total anxiety score was in the high average range (84th percentile). Sara also reported several protective factors including enjoying academic pursuits and the social support she receives from mother and younger sister.

Case Formulation

Using a biopsychosocial approach to case formulation, ¹² Sara's anxiety and mood symptoms were conceptualized as stemming from multiple predisposing, precipitating, and perpetuating factors. First, Sara likely had a biological predisposition to mood difficulties given her family history of depression. From a diathesis stress perspective, Sara may have had subclinical levels of anxiety and depression throughout her life without the presentation of a stressor. However, since Sara was not presenting with mood or anxiety concerns before her diagnosis, we hypothesized that her diagnosis and the associated stress served as a precipitating factor for the onset of her anxiety and depressive symptoms.

There were several perpetuating factors that contributed to the maintenance of Sara's depressive symptoms. First, side effects including fatigue, headaches, and stomach upset led to school absence, which, in turn, were associated with worry and anxiety about school performance as well as social anxiety. Staying home from school also contributed to a “vicious cycle” whereby Sara stayed home from school due to feeling sick and depressed, which led to further feelings of social isolation and decreased mood. In addition to disease-related factors, social and family factors also contributed to Sara's low mood (i.e., family conflict with her stepfather).

Since Sara had previously undergone a diagnostic assessment with the psychiatry team, formal diagnoses were not considered during this intake assessment, rather target symptoms and treatment goals were identified. The psychiatry team who previously assessed Sara consisted of a psychiatrist and mental health nurse who provide assessment and short-term intervention for patients who are admitted to the hospital as well as connect patients to outside resources upon discharge.

In collaboration with Sara, three main treatment goals were identified. First, given that Sara initially presented with more severe mood symptoms than anxiety symptoms as well as her disclosure of passive suicidal ideation, the first main goal of treatment was to increase Sara's mood and decrease her feelings of hopelessness and worthlessness. In addition to a consultation for pharmacotherapy with the psychiatry team, primary treatment strategies for increasing mood involved using a cognitive-behavioral approach to target both problematic thoughts and behaviors that were contributing to her low mood.

A cognitive-behavioral approach was selected given it is an evidence-based treatment for mood and anxiety symptoms.^13,14 Specifically, treatment activities included behavior activation (i.e., participating in enjoyable activities and having daily activities to look forward to), increased school attendance, increased sleep and sleep quality, increased opportunities for social interactions with friends, and identifying and challenging automatic negative thoughts that may be contribution to low mood. The second treatment goal was to use cognitive-behavioral strategies to reduce symptoms of anxiety by challenging cognitive distortions, reducing avoidance strategies, and learning relaxation strategies to help reduce physiological feelings of stress. A final treatment goal was to help Sara develop and identify coping strategies for psychosocial difficulties associated with adjustment to disease. Strategies such as normalizing, empathizing, discussing about benefit finding, and increasing social support were identified as key intervention strategies to achieve this goal.

At each appointment, Sara completed two PROs. First, Sara completed the Pediatric Quality of Life Inventory (PedsQL) 4.0. ¹⁵ The PedsQL generic core module is a valid and reliable 23-item measure that assesses physical, social, emotional, and cognitive domains and takes <5 minutes to complete. ¹⁶ Higher scores represent better quality of life. A cutoff point of 69.7 was identified for being at risk for low quality of life.^16,17 Second, Sara was asked to rate her symptoms of anxiety and depression separately using a numerical rating scale (NRS) ranging from “0” (no symptoms) to “10” (the worst symptoms imaginable). This NRS is commonly used to screen for emotional distress. ¹⁸

Therapeutic Intervention

Treatment occurred over an 8-month period from December 2015 to August 2016 for a total of nine sessions that Sara attended individually. Treatment sessions took place in a treatment room in the Psychology Department at Alberta Children's Hospital or in the day treatment unit while Sara was receiving her monthly infusions. The first four sessions occurred weekly and subsequently occurred on a monthly basis after Sara demonstrated a decrease in anxiety and depressive symptoms on the PROs. The PROs were used to monitor Sara's symptoms and to determine when consultation was needed with the psychiatry consultation service with regard to Sara's medication. For example, between the second and third sessions when Sara reported a slight decrease in health-related quality of life and disclosed passive suicidal ideation, the psychiatry service was consulted with regard to whether Sara's medication needed to be adjusted or increased. At each session, PROs were completed, homework was reviewed, and a new cognitive-behavioral skill or discussion topic was presented, and finally new homework to be practiced would be discussed. The content of each session is presented in Table 1. PROs were discussed at the beginning of each session and compared in relation to previous weeks. Treatment adherence was excellent as Sara attended all scheduled sessions and reported completing relaxation exercises and homework at home. Furthermore, PROs were used to discuss readiness for termination.

Outcomes

Results from the PROs are reported in Table 2. Over the course of treatment, Sara demonstrated increases in her total quality of life and decreased in distress symptoms until session 7. Sara attributed the increase in distress symptoms after session 7 to the recurrence of her tumor and knowing that she would need to undergo surgery and extended treatment. Sara underwent surgery between sessions 7 and 8. During her final termination session, Sara anecdotally reported that her mood and anxiety symptoms had improved and that she was trying to focus on the positive aspects of her health and well-being, rather than focusing on things that were out of her control. Sara appeared to tolerate the psychosocial intervention well and there were no adverse outcomes or events.

Discussion

This case study is a first attempt to document the use of PROs in conjunction with CBT to address psychosocial difficulties in AYA cancer patients. The PROs allowed for a constant symptom check-in and provided a built-in opportunity to discuss progress and psychosocial well-being in the treatment session. Comparing and contrasting Sara's ratings with the ratings from previous weeks allowed for discussions about changes, improvements, and setbacks that were occurring in her treatment. Creating a graph of treatment progress and discussing it with patients can provide a powerful visual of changes and improvements. Lastly, we found the PROs particularly useful to include in our documentation of treatment sessions for other health professionals (e.g., oncologists, psychiatrists, and nurses). Reporting PROs provided a window into the patient's perceived well-being and helped determine when consultation from other professionals was needed. Limitations to the approach included additional time required to administer, score, and report on the PROs in the patient's chart.

Our findings demonstrate some important considerations when conducting a therapeutic intervention with an adolescent diagnosed with cancer. First, our findings suggest that screening for a family history of mental health concerns as well as previous instances of mental health difficulties in adolescents diagnosed with cancer is critical. Facing a diagnosis of cancer, the associated treatment, side and late effects, is extremely stressful and can precipitate the onset of anxiety or mood symptoms, especially for adolescents who may already be at psychosocial risk. Second, a cognitive-behavioral therapy approach that includes evidence-based treatments such as psychoeducation, behavioral activation, cognitive restructuring, and symptoms monitoring can contribute to a decrease in mood and anxiety symptoms for an adolescent being treated for cancer.

In addition, our findings also suggest that taking a multidisciplinary approach can be advantageous for treatment planning and outcomes. Finally, the use of PROs in psychosocial therapy for an adolescent being treated with cancer provides a unique opportunity to closely monitor symptoms while increasing dialogue and reflection about what may be contributing to symptoms. Future research should evaluate whether the use of PROs has any substantial benefit above and beyond the effect of CBT on patient treatment outcomes.

Informed Consent

The patient and her legal guardian provided written informed consent for the publication of this case study and had the opportunity to review and comment on a draft of the article.