Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when

Lie, Hanne C.; Loge, Jon Håvard; Fosså, Sophie D.; Hamre, Hanne; Hess, Siri Lothe; Mellblom, Anneli; Ruud, Ellen; Finset, Arnstein

doi:10.1016/j.pec.2015.01.016

Cited by 26 publications

(23 citation statements)

References 43 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…34 In contrast, patients typically initiated discussions about psychosocial potential late effects. This is consistent with reported patient preferences for a greater focus on psychosocial issues during follow-up care, 25,35 and reports of elevated levels of psychological distress, chronic pain, and fatigue amongst childhood cancer survivors. [36][37][38] Thus, attention to potential late effects initiated by the patient could help to tailor the consultation to meet the patient's needs.…”

Section: Discussionsupporting

confidence: 83%

“…43 A challenge for the POs is that AYA survivors may not want such information, especially when feeling healthy. 25,29 Additionally, AYA survivors may not have progressed from concrete to abstract thinking, making abstract information about future health risks difficult to appreciate. [44][45][46] Concrete levels of thinking necessitate information exemplified in the ''here and now,'' not abstract ''if., then.''…”

Section: Discussionmentioning

confidence: 99%

“…Additionally, information about late effects may help survivors to adjust better to life after cancer, 23,24 reduce uncertainty and anxiety about ''what comes next,'' and allow survivors to make beneficial life-style choices. 25 Conversely, lack of such knowledge may be a barrier to long-term follow-up care attendance. 26 For pediatric oncologists (POs), balancing providing sufficient information about late effects without causing unnecessary anxiety is challenging.…”

Section: Introductionmentioning

confidence: 99%

“…29 Even if they want information, AYA survivors may not ask for it. 25 Thus, it is up to the POs to provide such information. 25,30 To explore current information practices, routine follow-up consultations were video recorded at a large, pediatric outpatient clinic serving about half the Norwegian population of AYA survivors of pediatric cancer.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study

Mellblom

Korsvold

Finset

et al. 2015

Journal of Adolescent and Young Adult Oncology

Self Cite

View full text Add to dashboard Cite

Purpose: Information about late effects is a prerequisite for survivors of childhood cancers to engage in selfmanagement of their health. Yet, many lack such knowledge. This study investigated to what extent: (1) potential late effects were discussed with adolescent and young adult (AYA)-aged survivors (of pediatric cancer), and (2) information about late effects was provided by the pediatric oncologists (POs) during routine follow-up consultations. Methods: Consultations were recorded with 10 POs and 66 adolescents, aged 12-20 years, treated for leukemia (72.7%) or lymphoma (21.2%), or who had received hematopoietic stem-cell transplantation for a benign disease (7.6%). Discussions of potential late effects were identified and coded, and then the amount of information about late effects provided was categorized into three levels: none, basic, and extended information. Results: Potential late effects were discussed in 85% of the consultations. Of these, 71% were PO initiated, and 60% concerned existing health problems. The POs provided none, basic, and extended information about late effects in 41%, 30%, and 29% of these discussions. Patients' age, time since treatment, and risk of late effects were not associated with amount of potential late effects discussed, but the type of potential late effect (physical vs. psychosocial and current vs. future risk) and PO were. Conclusion: Potential late effects were frequently discussed, thus providing ample opportunity to provide information about late effects to adolescent cancer survivors. The observed PO variability in providing such information indicates a need for standardization of information practices.

show abstract

Section: Discussionsupporting

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study

Mellblom

Korsvold

Finset

et al. 2015

Journal of Adolescent and Young Adult Oncology

Self Cite

View full text Add to dashboard Cite

show abstract

“…Choice of CCS outpatients receiving a follow‐up procedure could bias results towards greater distress. Study context clearly described4xxLie, 2015 Providing information about late effects after childhood cancer: Lymphoma survivors' preferences for what, how and when Qualitative,Survivors of childhood lymphoma [n = 34), mean age at diagnosis = 13, mean current age 37 enrolled in 5 focus groups Patients wanted to know about possible late effects, but information should be specific for each patient, communicated in person with written follow‐up.…”

Section: Supplementary Informationmentioning

confidence: 99%

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Lown

Phillips

Schwartz

et al. 2015

Pediatric Blood & Cancer

110

113

View full text Add to dashboard Cite

Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.

show abstract

Parent perspectives on information about late effects of childhood cancer treatment and their role in initial treatment decision making

Greenzang

Dauti

Mack

2018

Pediatric Blood & Cancer

View full text Add to dashboard Cite

Parents desire detailed information about late effects to make informed treatment decisions and prepare for the future. Despite the role of late effects in treatment decision making, some parents feel that late effects are either inadequately addressed or too overwhelming to process at diagnosis. Parents may benefit from early assessment of their information needs and a return to these issues over time.

show abstract

Providing information about late effects after childhood cancer: Lymphoma survivors’ preferences for what, how and when

Cited by 26 publications

References 43 publications

Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study

Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study

Psychosocial Follow‐Up in Survivorship as a Standard of Care in Pediatric Oncology

Parent perspectives on information about late effects of childhood cancer treatment and their role in initial treatment decision making

Contact Info

Product

Resources

About