scholarly journals Patient and Parent Experiences with Group Telerehabilitation for Child Survivors of Acute Lymphoblastic Leukemia

2021 ◽  
Vol 18 (7) ◽  
pp. 3610
Author(s):  
Genevieve Lambert ◽  
Nathalie Alos ◽  
Pascal Bernier ◽  
Caroline Laverdière ◽  
Kenneth Drummond ◽  
...  
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Lymphoblastic Leukemia ◽  
Childhood Cancer Survivors ◽  
Family Interactions ◽  
Post Intervention ◽  
Technical Requirements ◽  
Home Based ◽  
High Satisfaction ◽  
Program Adherence ◽  
Late Adverse Effects

Background: Acute Lymphoblastic Leukemia (ALL) is the most common pediatric cancer. ALL and its treatment cause altered bone-mineral homeostasis, which can contribute to musculoskeletal late adverse effects (LAEs). With the increasing number of childhood cancer survivors, LAEs are reported often, and are aggravated by inactive lifestyles. A telerehabilitation program is proposed to strengthen the muscle–bone complex and prevent future impairment. Objective: This study aimed to explore and better understand patient and parent experience of a telerehabilitation program after completion of ALL treatment. Methods: ALL survivors (n = 12), 75% girls, 7.9 to 14.7 years old, within six months to five years of treatment, were recruited to participate in the proposed study, along with a parent. The 16-week group program included 40 potential home-based physical activities, with monthly progression, supervised by a kinesiologist, through an online telerehabilitation platform. Patients could be included in the study if they joined during the first month of intervention of their group (minimum 12 weeks of intervention). A semi-structured post-intervention interview was conducted with the patients and their parent during the final assessment, along with a review of the kinesiologist’s clinical notes, to obtain a portrait of the participants’ experience with the telerehabilitation program. Overarching themes were identified by one author and confirmed by two senior authors before extracting the various aspects of each theme. Results: Of the 12 patients recruited, three were excluded from the analysis because they did not complete the minimum 12 weeks of intervention (one = relapse, one = failure to meet technical requirements, and one = abandoned due to parent’s disinterest). The nine patients who completed the program (six girls; 10.93 ± 2.83 years) had a mean adherence of 89%. The overarching themes identified were the program modalities (group approach with patient–parent paired training, supervised by a kinesiologist), the telerehabilitation system, the participants’ perception of the benefits, and recommendations and suggestions from the families. Both patients and parents expressed very high satisfaction with the program and perceived benefits. Conclusion: Participants appreciated the program and reported they would all recommend it to other families in similar situations. The telerehabilitation method of service delivery was perceived by some as decisive in choosing to participate, while the supervision and intra- and inter-family interactions were the motivating factors that were key to program adherence.

scholarly journals Home-Based Resistance and Plyometric Training Program using Telehealth in Early Survivors of Childhood Acute Lymphoblastic leukemia: a Feasibility Study (Preprint)

2020 ◽  
Author(s):  
Genevieve Lambert ◽  
Nathalie Alos ◽  
Pascal Bernier ◽  
Caroline Laverdière ◽  
Dahlia Kairy ◽  
...  
Keyword(s):  
Physical Activity ◽  
Acute Lymphoblastic Leukemia ◽  
Bone Health ◽  
Lymphoblastic Leukemia ◽  
Functional Health ◽  
Exercise Interventions ◽  
Technical Requirements ◽  
Home Based ◽  
Intervention Protocol ◽  
The Impact

BACKGROUND Acute Lymphoblastic Leukemia (ALL) is the most common type of pediatric cancer. ALL causes altered bone-mineral homeostasis state, which can contribute to osteopenia, and bone fractures, most commonly vertebral fractures. With the increasing number of childhood cancer survivors, late adverse effects (LAEs) such as musculoskeletal comorbidities are often reported, and are further influenced by inactive lifestyle habits. Physical activity has been shown to increase mechanical workload to the bone, mitigating the bone impairment in other cancer-specific populations. OBJECTIVE This interventional study proposes to investigate (1) the use of telehealth to deliver home-based exercise program for early-on survivors of bone marrow-related hematological malignancies, further (2) assessing its impact on survivors’ musculoskeletal and functional health. METHODS Survivors of ALL (n=12); 75% girls; 7.9 to 14.7 years old) within 6 months to 5 years off treatment were recruited to participate in the proposed study with a parent. The 16-week program included 40 potential home-based physical activity interventions supervised by a kinesiologist through a telehealth internet platform, with monthly progression. Patients could be recruited for the cohort if they were able to join the program during the first month (minimum 12 weeks of intervention). Evaluation before and after the intervention protocol highlighted differences in functional capacities and musculoskeletal health of patients using Mechanography, pQCT, six-minute walk test (6MWT), and grip force test. RESULTS Of the 12 patients recruited, 3 were excluded (1=relapse; 1=failure to meet technical requirements, and 1 abandoned). The 9 patients that completed the program (6 girls; 10.93±2.83 years; BMI: 21.58±6.55; CR: 36.67±16.37months) had a mean adherence of 89%, representing a completion rate of 75%. Additionally, these patients showed functional improvements in absolute and relative lower-limbs muscle power, relative muscle force, and 6MWT. Participants also showed improved bone health post-intervention on the following parameters: BMC, SSI, total and cortical CSA at the 14% and 38% sites of the tibia. CONCLUSIONS Telehealth might be a feasible way of delivering exercise interventions to ALL early-on survivors, with high adherence, and might bring benefits to patients’ functional performance in addition to bone health parameters. A longer intervention is needed to truly assess the impact of such program on bone health.

scholarly journals Assessment of obesity and hepatic late adverse effects in the Egyptian survivors of pediatric acute lymphoblastic leukemia: single center study

2017 ◽  
Vol 9 (1) ◽  
pp. e2017026 ◽  
Author(s):  
Farida El-Rashedy ◽  
Mahmoud Ahmed El-Hawy ◽  
Sally El Hefnawy ◽  
Mona Mohammed
Keyword(s):  
Hepatitis C ◽  
Acute Lymphoblastic Leukemia ◽  
Adverse Effects ◽  
Liver Enzymes ◽  
Lymphoblastic Leukemia ◽  
Overweight And Obesity ◽  
Direct Bilirubin ◽  
P Value ◽  
Late Adverse Effects ◽  
Pediatric All

BACKGROUND: Childhood acute lymphoblastic leukemia (ALL) with current cure rates reaching 80% emphasizes the necessity to determine treatment related long-term effects. The aim of this study is to estimate the prevalence of overweight, obesity and hepatic late adverse effects in a cohort of ALL survivors treated at the Hematology and Oncology Unit, Pediatrics Department, Menoufia University, Egypt.METHODS: In this case control study, height, weight and body mass index (BMI) were assessed for 35 pediatric ALL survivors and 15 healthy children. These parameters were plotted on the growth and WHO standard deviation charts for both males and females. Overweight and obesity were defined by BMI > 85th and 95th percentile respectively. Laboratory investigations were done in the form of iron profile, liver enzymes, total and direct bilirubin levels, serum urea &creatinine and detection of hepatitis C virus antibodies by ELISA.RESULTS: The weight and BMI were significantly higher in the survivors than controls (P value =0.002 and 0.039 respectively). ALT, total & direct bilirubin, serum ferritin and transferrin saturation were significantly higher in the survivors than the controls (P value = 0.03, 0.036, 0.044, 0.006 and 0.03 respectively). Ten (28.6%) of survivors had hepatitis C antibodies with none (0%) of controls (P value =0.02)CONCLUSIONS: Pediatric ALL survivors are at increased risk of overweight/obesity, hepatic dysfunction in the form of elevated liver enzymes, bilirubin levels and C viral hepatitis. Screening of those survivors for such complications should be considered.Key words: ALL- Survivors – Obesity- Liver.

The PETALE study: Late adverse effects and biomarkers in childhood acute lymphoblastic leukemia survivors

2016 ◽  
Vol 64 (6) ◽  
pp. e26361 ◽  
Author(s):  
Sophie Marcoux ◽  
Simon Drouin ◽  
Caroline Laverdière ◽  
Nathalie Alos ◽  
Gregor U. Andelfinger ◽  
...  
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Adverse Effects ◽  
Lymphoblastic Leukemia ◽  
Childhood Acute Lymphoblastic Leukemia ◽  
Late Adverse Effects

A Home-based Maintenance Therapy Program for Acute Lymphoblastic Leukemia—Practical and Safe?

2011 ◽  
Vol 33 (6) ◽  
pp. 433-436 ◽  
Author(s):  
Bob Phillips ◽  
Michael Richards ◽  
Rachel Boys ◽  
Miranda Hodgkin ◽  
Sally Kinsey
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Maintenance Therapy ◽  
Lymphoblastic Leukemia ◽  
Therapy Program ◽  
Home Based

scholarly journals Successful Outpatient Administration of Blinatumomab Infusion in Pediatric Patients with Acute Lymphoblastic Leukemia

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 4028-4028
Author(s):  
Lora Bojilova-Dor ◽  
Kerice Pinkney ◽  
Brian Cauff ◽  
Deborah Kramer ◽  
Anne M Schaefer ◽  
...  
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
B Cell ◽  
Multidisciplinary Team ◽  
Pediatric Patients ◽  
Conflicts Of Interest ◽  
Lymphoblastic Leukemia ◽  
Toxicity Profile ◽  
Home Setting ◽  
Home Based ◽  
Effective Manner

Abstract Introduction: Acute lymphoblastic leukemia (ALL) is the most common type of pediatric cancer. Unfortunately, approximately 15% of children with high-risk B-cell ALL (B-ALL) relapse after frontline chemotherapy. Treatment of relapsed/refractory B-ALL is still challenging, and more effective novel therapies are urgently warranted. Blinatumomab, a first in class bispecific antibody therapeutic, has demonstrated superiority compared to standard chemotherapy in patients with B-ALL and has a manageable toxicity profile. Blinatumomab functions by binding to CD19 expressed on B-cells and CD3 expressed on T-cells, resulting in T-cell-mediated killing of CD19-positive cells common in B-cell malignancies. Despite remarkable efficacy and a manageable toxicity profile compared to standard-of-care chemotherapy, blinatumomab poses unique healthcare system challenges related to preparation, administration, toxicity monitoring, and medication error prevention. The drug's success in helping patients achieve complete remission relies on its continuous and uninterrupted administration. In order to ensure that it is delivered in the safest and most effective manner, education on its unique logistical and administration challenges is imperative. Objectives: The primary objective of this study is to describe and share the 6 years of institutional experience on the outpatient delivery of blinatumomab for the management of pediatric patients with B-ALL as per Children's Oncology Group protocols, as well as to retrospectively analyze the safety of this novel 28-day home-based therapy. Methods: A multidisciplinary team composed of physicians, nurses, and pharmacists was created to address administration challenges associated with blinatumomab infusions. Although blinatumomab requires a 28-day continuous infusion, it is not necessary for patients to remain hospitalized for the entire cycle. To ensure tolerability prior to discharge, patients are monitored closely during the first 3 days of Cycle 1 and 2 days of Cycle 2 for signs of cytokine release syndrome and neurological toxicities. Once discharged, they are seen every 96/72 hours for bag changes in either an outpatient hematology/oncology unit or by home health for those off study. Results: A total of 16 patients were treated with blinatumomab between May 2015 and June 2021; 10 were newly diagnosed and 6 were in first relapse. Of the 26 total infusions, 24 were successfully completed without significant adverse reactions. Two patients treated for relapsed disease had to discontinue therapy; one experienced neurotoxicity within 72 hours of blinatumomab infusion initiation and the other developed refractory disease and was switched to another protocol. No adverse events were observed in the home setting. Discussion: The team was successfully able to transform the original inpatient-only blinatumomab protocol to the outpatient setting. Retrospective analysis over 6 years demonstrates a clinically significant reduced rate of complications of blinatumomab administration in comparison to previous reports (Amicucci et al. 2021), which can be attributed to careful multidisciplinary team planning and delivery. This study confirms the feasibility of a home-based continuous blinatumomab infusion without adverse effects on safety. Additionally, this outpatient protocol leads to cost savings associated with reduced length of stay and an overall improved quality of life for pediatric patients able to receive therapy at home with their caregivers. Disclosures No relevant conflicts of interest to declare.

scholarly journals Parents’ Experiences with Home-Based Oral Chemotherapy Prescribed to a Child Diagnosed with Acute Lymphoblastic Leukemia: A Qualitative Study

2021 ◽  
Vol 28 (6) ◽  
pp. 4377-4391
Author(s):  
Étienne Camiré-Bernier ◽  
Erwan Nidelet ◽  
Amel Baghdadli ◽  
Gabriel Demers ◽  
Marie-Christine Boulanger ◽  
...  
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Social Life ◽  
Lymphoblastic Leukemia ◽  
Multidisciplinary Care ◽  
Emotional Impact ◽  
Daily Routine ◽  
Structured Interviews ◽  
Home Based ◽  
Multidisciplinary Care Team ◽  
Families With Children

 Acute lymphoblastic leukemia (ALL) is the most common type of cancer in children. Treatment includes home-based oral chemotherapies (OCs) (e.g., 6-mercaptopurine and dexamethasone) taken for 2 to 3 years. The management of OC can be challenging for children and their parents. However, the multifaceted experience of families with children taking OC for ALL is largely undescribed. We report the experience with these OCs from the parents’ perspective. We conducted a qualitative descriptive study. Semi-structured interviews were conducted with the parents of children with ALL aged <15 years, followed in a specialized university-affiliated center. The interviews were fully transcribed and thematically analyzed. Thirteen of the seventeen eligible parents (76.5%) participated in the study. The parents’ motivation to follow the recommendations provided by the multidisciplinary care team regarding OC was very high. The quantity and the quality of the information received were judged adequate, and the parents reported feeling knowledgeable enough to take charge of the OC at home. Adapting to the consequences of OC on family daily life was collectively identified as the biggest challenge. This includes developing and maintaining a strict daily routine, adapting to the child’s neurobehavioral changes during dexamethasone days and adapting family social life. Our findings have several implications for enhancing the support offered to families with home-based OC for ALL. Supportive interventions should consider the family as a whole and their needs should be regularly monitored. Specific attention should be paid to the development and maintenance of a routine, to the parental burden, and to the emotional impact, especially regarding dexamethasone. 

Inflammatory Biomarkers after an Exercise Intervention in Acute Lymphoblastic Leukemia Survivors

2021 ◽  
Author(s):  
Tuomas Lähteenmäki ◽  
Liisa Järvelä ◽  
Harri Niinikoski ◽  
Anu Huurre ◽  
Arja Harila-Saari
Keyword(s):  
Acute Lymphoblastic Leukemia ◽  
Physical Exercise ◽  
Exercise Intervention ◽  
Lymphoblastic Leukemia ◽  
Exercise Program ◽  
Low Grade ◽  
Healthy Controls ◽  
Protein Levels ◽  
Home Based ◽  
Increased Risk

Abstract BackgroundCancer survivors show increased risk for non-communicable diseases and chronic low-grade inflammation characterizes the development of such diseases. We investigated inflammatory plasma protein profiles of survivors of acute lymphoblastic leukemia (ALL) in comparison to healthy controls and after an intervention with a home-based exercise program. ProcedureSurvivors of ALL aged 16-30 years (n=21) with a median time of 15.9 years from diagnosis, and sex- and age-matched healthy controls (n=21), were studied. Stored plasma samples were analyzed with Olink’s 92-protein-wide Inflammation panel in 21 ALL long-term survivors at baseline, after a 16-week home-based exercise intervention (n=17) and in 21 age- and sex-matched controls at baseline. Protein expression levels were compared between the groups. ResultsInflammatory protein levels did not differ between the survivors and controls at baseline. Significantly reduced levels after the intervention were found in 11 proteins related to either vascular inflammation, insulin resistance, or both: TNFSF14, OSM, MCP-1, MCP-2, FGF-21, CCL4, TGF-alpha, TRAIL, ADA, CXCL6, and LAP TGF-beta-1. ConclusionsThe ALL survivors were not significantly more affected by inflammation than controls at baseline. The survivors’ 16-week physical exercise intervention led to significant beneficial change in inflammation protein levels. Physical exercise should be promoted for survivors of cancer.

scholarly journals Long-Term Efficacy of Methylphenidate in Enhancing Attention Regulation, Social Skills, and Academic Abilities of Childhood Cancer Survivors

2010 ◽  
Vol 28 (29) ◽  
pp. 4465-4472 ◽  
Author(s):  
Heather M. Conklin ◽  
Wilburn E. Reddick ◽  
Jason Ashford ◽  
Susan Ogg ◽  
Scott C. Howard ◽  
...  
Keyword(s):  
Social Skills ◽  
Acute Lymphoblastic Leukemia ◽  
Cancer Survivors ◽  
Behavioral Problems ◽  
Lymphoblastic Leukemia ◽  
Cancer Control ◽  
Childhood Cancer Survivors ◽  
Control Group ◽  
Parent Ratings

Purpose Methylphenidate (MPH) ameliorates attention problems experienced by some cancer survivors in the short term, but its long-term efficacy is unproven. Patients and Methods This study investigates the long-term effectiveness of maintenance doses of MPH in survivors of childhood brain tumors (n = 35) and acute lymphoblastic leukemia (n = 33) participating in a 12-month MPH trial. Measures of attention (Conners' Continuous Performance Test [CPT], Conners' Rating Scales [CRS]), academic abilities (Wechsler Individual Achievement Test [WIAT]), social skills (Social Skills Rating System [SSRS]), and behavioral problems (Child Behavior Checklist [CBCL]) were administered at premedication baseline and at the end of the MPH trial while on medication. A cancer control group composed of patients who were not administered MPH (brain tumor = 31 and acute lymphoblastic leukemia = 23) was assessed on the same measures 2 months apart. Results For the MPH group, repeated measures analysis of variance revealed significant improvement in performance on a measure of sustained attention (CPT indices, P < .05); parent, teacher, and self-report ratings of attention (CRS indices, P < .05), and parent ratings of social skills or behavioral problems (SSRS and CBCL indices; P < .05). In contrast, the cancer control group only showed improvement on parent ratings of attention (Conners' Parent Rating Scale indices; P < .05) and social skills (SSRS and CBCL indices; P < .05). There was no significant improvement on the academic measure (WIAT) in either group. Conclusion Attention and behavioral benefits of MPH for childhood cancer survivors are maintained across settings over the course of a year. Although academic gains were not identified, MPH may offer benefits in academic areas not assessed.

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