Background and Aims

Background and Aims: Adolescents and young adults (AYAs) with cancer, in addition to having a life threatening illness, must negotiate the developmental task of transitioning from childhood to adulthood. This is a high-risk period for psychological and emotional stress and unsatisfactory outcomes. This analysis was part of a study that explored AYAs’ experiences with cancer treatment decision making including decisions that came up in their daily lives.

Methods

Methods: AYAs receiving treatment within one year of a cancer diagnosis participated in a focused ethnography study. AYAs were purposefully sampled from two quaternary pediatric oncology programs. We report on how cancer and treatment affect decisions that arise in the daily lives of AYAs, and how cancer related decisions impact their lifestyles. Analysis included field notes, analytic memos and coding of interview transcripts, using Atlas.ti.

Results

Results: Thirty-one interviews were conducted with 16 AYAs, between 15-20 years of age, receiving treatment. Three major categories were identified: 1) not being able to do what they used to do, 2) changing interpersonal relationships, and 3) living with uncertainty. AYAs described spending increased time with family who offered strength, support and advocacy. They discussed strategies for managing their cancer including deciding how they participated in or avoided activities. They sometimes felt like a burden to others and missed out on normal activities. Social media facilitated their connection to peers.

Conclusions

Conclusions: AYAs demonstrated resilience and actively managed the impact cancer places on their lives. Healthcare providers can facilitate the AYA’s control over their cancer experience, self-efficacy, and can encourage them to participate in normal activities, as possible. Research is necessary to determine how AYAs want to participate in decision-making, how to support continued engagement with family and friends, and help them to adjust to their disease experience as another aspect of living their new "cancer normal.”

Background and Aims

Background: AYAs treated for cancer face social, financial and educational challenges surrounding their diagnosis and treatment. Use of social media (SM) by AYAs is widespread; however, little data exist on how AYAs use SM in the context of their cancer diagnosis.

Aims: To evaluate how AYAs use SM regarding cancer diagnosis and treatment.

Methods

AYAs treated in a pediatric oncology center discussed their SM use in focus groups moderated by 2 undergraduate students and a social worker. Four focus groups were conducted with 11 total participants. Subjects answered questions posed by the moderators and engaged in open discussion. An audio recording of each group was transcribed and analyzed for common themes/trends.

Results

Eleven subjects participated in 4 focus groups. Mean age was 19.6 (range 16-21); 64% male and 36% female. 55% had leukemia/lymphoma and 45% had solid tumors. Self-reported daily SM use ranged from 6 hours. Six common themes were identified: 1) Connecting with people; 2) Seeking Information; 3) Expressing feelings; 4) Enjoyment; 5) Communication with clinicians; 6) Parental use of SM. Direct quotes best illustrating these themes will be presented.

Conclusions

AYAs with cancer utilize SM in different ways. Some use SM to connect with friends or other patients to discuss their cancer diagnosis; others prefer not to discuss their cancer. Some AYAs reach out to other patients for guidance or to watch videos of procedures; others attempt to avoid cancer information due to fear of what they might see. Some use SM to express their feelings; however, many AYAs do not. Instead they use more private means (texting). Most AYAs enjoy using SM to pass time during treatment, find inspirational stories, and to feel less alone. Many AYAs are influenced by their parents’ use of SM. Most AYAs desire connecting with their clinicians via SM after, but not during treatment.

Background and Aims

Peer mentoring may improve health-related quality of life (HRQL) and provide informational, appraisal, and emotional support for adolescents with chronic conditions. To address the support needs of adolescents with cancer, we adapted an online mentoring program called iPeer2Peer. This study aimed to examine the feasibility of iPeer2Peer in terms of accrual, adherence, and acceptability. Secondary aims were to evaluate the preliminary effectiveness of iPeer2Peer on transition-readiness (Using TRANSITION-Q) and HRQL (using PedsQL) compared to a control group.

Methods

English speaking adolescents (12-17 years) diagnosed with cancer were recruited from five pediatric hospitals across Canada. Participants were randomized to either waitlist control or iPeer2Peer. The program consisted of up to 10 Skype calls over 15 weeks with a trained peer mentor. Questionnaires were completed at baseline and endpoint. Descriptive statistics and a linear mixed model were used to assess the feasibility and the effect of iPeer2Peer between groups.

Results

Of the 163 participants that were screened and approached, 45 consented (28%). This rate is comparable to similar iPeer2Peer studies[SAK1] . A total of 39 participants completed baseline questionnaires and were randomized to iPeer2Peer (n=19) or waitlist control (n=20). Twenty-six (67%) participants completed all post-study questionnaires (control=13 and iPeer2Peer=13). Calls were completed by ten participants (53%) in the iPeer2Peer group (average: 7 calls; range: 2-10). There were no significant differences in transition readiness or HRQL between the two groups.

Conclusions

Approximately 50% of those randomized to iPeer2Peer were partially adherent to the peer mentoring program. While the current sample was not powered to detect significant differences, preliminary results will inform a sample size calculation for a future trial. Overall, the results will help inform improvements in program engagement which will enable us to refine the program for a future large-scale RCT at major Children’s Oncology Group-affiliated centers in Canada and the United States.

Background and Aims

Evidence shows that survivors of solid tumors have a lower survival rate and shorter disease-free survival time than survivors of leukemia. However, the psychological well-being and health-related quality of life (HRQOL) of these 2 groups of cancer survivors have not been compared. This study aimed to examine and compare the impact of cancer and treatment-related effects on psychological well-being and HRQOL between survivors of childhood solid tumors and leukemia.

Methods

We conducted a cross-sectional study involving 65 Hong Kong survivors of solid tumors and 70 survivors of leukemia aged 8 to 18 years who had their medical follow-up in a pediatric outpatient clinic. Participants' depressive symptoms, self-esteem, and HRQOL were assessed. Twenty-two survivors of childhood solid tumors and 15 survivors of childhood leukemia were then selected for semistructured interviews.

Results

Survivors of childhood solid tumors reported significantly higher mean scores for depressive symptoms, and lower mean self-esteem and HRQOL scores than survivors of childhood leukemia. Qualitative data revealed that survivors of childhood solid tumors faced more challenges in their daily life than survivors of childhood leukemia.

Conclusions

Survivors of childhood solid tumors reported poorer psychological well-being and HRQOL than survivors of childhood leukemia. This vulnerable group warrants more attention and support. It is vital for healthcare professionals to understand the impact of cancer and treatment-related effects in the context of different types of cancer. This will facilitate development and evaluation of appropriate psychological interventions to promote psychological well-being and HRQOL among childhood cancer survivors.

Background and Aims

Many survivors of pediatric brain tumors (PBTS) experience poor social outcomes. However, the developmental trajectory of their social functioning is unclear. Data from two studies involving PBTS of different age groups were combined, aiming to 1) approximate the social functioning of PBTS as they age, and 2) examine associations with psychosocial functioning.

Methods

In Study 1, young PBTS (n=21; 62.7% male; 60.8% Caucasian) aged 4-6 (5.08±0.68) years and ≥5 months (1.04±0.83 years) post-treatment completed the Challenging Situations Task. In Study 2, older PBTS (n=48; 45.8% male; 87.5% Caucasian) aged 8-12 (10.10±1.33) years and ≥2 years (5.61±2.45) post-treatment completed the Attributions and Coping Questionnaire. Parents completed NIH Toolbox subscales (Peer Rejection, Social Withdrawal, and Empathic Behaviors) and the BASC-3.

Results

Study 1 participants typically responded to hypothetical social situations with sadness and prosocial actions, while Study 2 PBTS responded with anger and preferred adult intervention or appeasement strategies. In younger PBTS, significant associations were found between feeling happy and internalizing problems (r=-.444, p<.05), prosocial actions and social withdrawal (r=-.509, p<.05), and crying behavior and internalizing problems (r=.469, p<.05) and social withdrawal (r=.464, p<.05). In Study 2, significant associations were observed between sadness and empathic behaviors (r=-.313, p<.05), embarrassment and peer rejection (r=-.331, p<.05), adult intervention strategies and empathic behaviors (r=-.300, p<.05), and emotional/inactive reactions and internalizing problems (r=.444, p<.01) and behavioral symptoms (r=.337, p<.05).

Conclusions

Findings suggest developmental progression of social problem-solving, evolving from feelings of sadness to anger, and from prosocial to passive and/or appeasing reactions. Additionally, parents appear to assess behavior differently based on child age: PBTS reacting with emotion/inactivity were seen, if younger, as more socially withdrawn, but if older, as having more behavioral symptoms. Future work is needed to fully illustrate changes in social problem-solving among PBTS over time, and how these changes impact long-term psychosocial outcomes.