nursing care for children with down syndrome (ds) and leukemia
TRANSCRIPT
Abstracts / European Journal of Oncology Nursing 17 (2013) 892–899894
objectives of this study were to determine (1) inwhich period of treatmentchanges in nutritional status and body composition occurred, and (2)which factors contributed to these changes.
Materials and methods
We performed a prospective cohort study of 133 newly diagnosed cancerpatients with hematological, solid, and brain malignancies. Anthropo-metric data and related factors were assessed at 0, 3, 6 and 12months afterdiagnosis.
Results
Despite initial weight loss in the first weeks after diagnosis in patients withhematological and solid malignancies, body mass index (BMI) and fat mass(FM) increased within 3 months with 0.13 standard deviation scores (SDS)(P<0.001) and 0.05 SDS (P¼0.021) respectively. Increase continued duringthe next 9 months, and resulted in doubling of the number obese patients.Fat free mass (FFM), already low at diagnosis, remained low. During thewhole study period about 17% of the patients were malnourished ac-cording to low FFM. Tube feeding and diminished activity level wererelated to increase in respectively BMI and %FM SDS. No relationship wasfound between energy intake or corticosteroids and increase in BMI or %FM.
Conclusions
Alarming increase of BMI and FM SDS already started within the period ofintensive treatment and continued thereafter, while FFM SDS remainedlow. Improvement of nutritional status and body composition might beaccomplished by prevention of overfeeding and improvement of physicalactivity in children on treatment.
NAVIGATION, EDUCATION AND ELECTRONIC INFORMATION FORADOLESCENTS AND YOUNG ADULTS WITH CANCER: CHEMOTHERAPY,CALENDARS, FLASH DRIVES, AND WEBSITE RESOURCES TO SHOWYOU SHARE AND CARE
P. Anderson a, M. Wong Salazar-Abshire b, T. Poon b, T. Lazarte b,L. Salvador b, L. Gore b, J. Chasnis c, K. Carson c
aMDACC/Levine Children's Hospital, Hematology/Oncology, Houston/Charlotte, USAbMD Anderson Cancer Center, Pediatrics, Houston, USAc Levine Children's Hospital, Hematology/Oncology, Charlotte, USA
Purpose/objective
LOTS of information is shared with patients with childhood cancers andtheir families, friends, and caregivers. Oral information may lack sufficientdetail and often is poorly remembered. Written information can become a‘really big book’. Personal computers with internet access and flash driveshave made patient education and navigation easier and quantity andquality of information better.
Materials and methods
We will share both electronic and internet resources as well as somestrategies for navigation and education that our families have found useful.
Results
During work-up and therapy we commonly update and share a sum-mary containing contact and clinical information including a problem
list/action plan. Our patients have electronic access to their scheduleusing My MD Anderson. The treatment plan is often explained using aroadmap or a 5 week calendar that is available as an Adobe profes-sional editable pdf document. This helps families, oncologists, andnurses ‘at a glance’ coordinate therapy, family events, and follow-up.Articles, chemotherapy drug information, calendars, images (e.g.powerpoint or pdf), radiation treatment plans and pdf of order sets canbe placed on a flash drive. Families can then review this material andshare information with their primary physician or others with thesame rare cancer (e.g. via acor.org). A website useful for letting familyand friends know of progress and events during therapy iscaringbridge.org. A website with a calendar for families to organizetheir lives (e.g. making meals, transportation needs, child sitting, etc.)is lotsahelpinghands.org. A website which can send messages, photosand video clips to an email address on a FUTURE date is zarpz.com (tocreate a legacy).
Conclusions
Since most families of patients with childhood cancer have a personalcomputer with internet access, the quality and quantity of informationprovided by physicians, nursing educators and navigators is becomingbetter and better. The Southern Childhood Cancer Network decreasedtravel cost & time and improved quality of life for children with hemato-logic cancers in southern Thailand. The parents satisfied with thechemotherapy network program. The cancer network improved treatmentadherence in resource limiting area.
Acknowledgements
Our network has made possible by support from Union InternationalCancer Control (UICC) under ‘My Childs Matters’ program and NationalHealth Security Office (NHSO) Thailand.
NURSING CARE FOR CHILDREN WITH DOWN SYNDROME (DS) ANDLEUKEMIA
J. Iida a, M. Hirata a, D. Hasegawa b, A. Sekitomi a, Y. Toriyama a, W. Irie a,R. Nishino a, M. Ozawa b, A. Manabe b, R. Hosoya b
a St. Luke's International Hospital, Nursing, Tokyo, Japanb St. Luke's International Hospital, Pediatrics, Tokyo, Japan
Purpose/objective
To clarify nursing care issues required for children with DS and Leukemia
Materials and methods
Ten children with DS who were consecutively diagnosed with leukemia (7acute myeloid leukemia and 3 acute lymphoblastic leukemia) at St. Luke'sInternational Hospital between January 2005 and November 2012 wereevaluated in this retrospective analysis.
Results
Median age at diagnosis was 2.5 years (range. 1.0 - 7.2). Median devel-opmental quotient (DQ) at admission was 39 (range, 26 - 63) and had nosignificant difference compared at the end of hospitalization (medianduration was 10 months). Eight patients had DS-associated complicationsincluding congenital heart disease, hypothyroidism and laryngomalacia,but none of them interfered starting chemotherapy. All patients sufferedfrom treatment-related complication such as infection and mucositis, butno treatment-related mortality was observed. Nursing care issues, spe-cifically required for patients with DS and leukemia, are divided into 4
Abstracts / European Journal of Oncology Nursing 17 (2013) 892–899 895
categories: safety management (self-removal of central venous catheter(CVC) and falling), infection control (skin care, oral care and managementof respiratory infection), difficulties in daily nursing care (oral medicationand toilet support) and psychosocial problems (anxiety and stress amongfamily). The risk of self-removal of CVC was significantly correlated withonly lower age. However there was no correlation between other prob-lems and variables (DQ, type of leukemia and presence of autism). Allissues were addressed collaboratively with multi-disciplinary teamincluding child life specialist, nursery teacher, and medical social worker.
Conclusions
Since children with DS and leukemia have developmental disabilities andincreased susceptibility to infection, special considerations in nursing careare needed. Taking into account physical and cognitive abilities of eachpatient, nursing care should be individualized. Multi-disciplinary approachis important to promote development of these patients and to supporttheir families. Lastly, in order to implement optimal nursing care, sufficientstaffing and child-friendly environment should be maintained.
PATIENT-REPORTED OUTCOMES COLLECTED VIA SMARTPHONE:ADOLESCENT CANCER PATIENTS' NAUSEA TRAJECTORIES
C. Baggott aaDepartment of Physiological Nursing, University of California San Francisco,San Francisco, USA
Purpose/objective
Nausea is commonly associated with cancer treatment. However, thetrajectories of patients' daily experiences with nausea have not been wellcharacterized, particularly during adolescence. Therefore, the purpose ofthis investigation was to describe adolescents' daily reports of nausea overa 3-week period.
Materials and methods
In this study, 58 cancer patients aged 13-21 years (on therapy, n¼22; off-therapy, n¼36) completed an electronic symptom diary on a smartphoneplatform daily for 21 days. Nausea was measured on the Pediatric NauseaAssessment Tool (PeNAT, potential range: 1-4) and a visual analog scale(potential range: 0-100). Higher scores on both instruments indicate moresevere nausea.
Results
Adherence to daily symptom reporting exceeded 80%. The correlation ofscores on the PeNAT and the nausea visual analog scale were strong andpositive (r¼0.75, p <0.001). Nausea severity did not vary by gender orethnicity and did not correlate significantly with age. As expected, nauseaseverity was significantly higher among patients who were on-therapy(mean PeNat¼1.55) than those who had completed treatment (meanPeNat ¼1.24, p¼0.011). Although among patients receiving chemotherapynausea severity scores were fairly low when averaged among a typical 21-day treatment course, considerable inter-patient and intra-patient vari-ability was noted. While some patients reported no nausea, others re-ported high levels of nausea throughout the chemotherapy cycle. Inaddition, the relationship of nausea to other symptoms (i.e., pain, sleepquality, fatigue), mood, and to quality of life will be presented.
Conclusions
Despite the common use of multi-agent anti-emetic therapy, some pa-tients remain burdened by nausea. Additional research of the etiology andtreatment of chemotherapy-induced nausea is needed.
PHYSICAL CONDITION AND ITS RELATIONSHIP TO UNCERTAINTY OFSURVIVORS OF CHILDHOOD AND ADOLESCENCE WITH LOWEREXTREMITY BONE TUMOR IN JAPAN
S. Katsumoto a, M. Maru a, R. Maeda a
aGraduate School of Health Care Sciences, Tokyo Medical and DentalUniversity, Tokyo, Japan
Purpose/objective
This study aimed to determine the current physical condition, includingphysical function, limb pain, and self-care for the limb, of survivors ofchildhood and adolescence with lower extremity bone tumor, and identifyfactors related to uncertainty.
Materials and methods
Self-administered questionnaires were distributed at two cancer hospi-tals in Japan. Forty-two participants who had been diagnosed with os-teosarcoma (n¼33) or Ewing's sarcoma (n¼3) before the age of 19 wererecruited. Physical function was measured using the Toronto ExtremitySalvage Score translated in Japanese. Correlation analysis and multipleregression analysis were performed to examine the relationships be-tween uncertainty and physical condition.
Results
The most common surgical procedure was total knee replacement (n¼23).The prevalence of limb pain was 42% and three participants had phantomlimb pain. Seventy-five percent of participants responded that they couldperform self-care for the limb and specific examples given in free de-scriptions included skin care for the amputation surface, requesting repairsfor equipment failures, and control of limb pain. The results of a correlationanalysis revealed that physical function (r¼-0.47, p<0.01), limb pain(r¼0.56, p<0.01) and self-care for the limb (r¼-0.58, p<0.01) were factorsrelated to uncertainty. Multiple regression analysis (adjusted R2¼0.41)indicated that uncertainty is affected by physical function (b¼-0.36) andself-care for the limb (b¼-0.46).
Conclusions
Previous studies assumed that the psychological state of survivors ofchildhood and adolescence with lower extremity bone tumor is notaffected by their physical function. However, this study clarified thecorrelation between survivors' uncertainty and their physical condition.Maintaining good self-care for the limb improves survivors' ability tocope with uncertainty. Moreover, those who underwent total kneereplacement were likely to experience limb pain. Therefore, it is impor-tant for medical staff to assess the degree of limb pain and support paincontrol.
PARENTS' PERCEPTIONS OF THEIR CHILD'S SYMPTOM BURDEN DURINGAND AFTER CANCER TREATMENT
L. Hedén a, U. Pöder b, L. Von Essen b, G. Ljungman a
aUppsala University, Department of Women's and Children's health, Uppsala,SwedenbUppsala University, Department of Public Health and Caring SciencesPsychosocial Oncology and Supportive Care, Uppsala, Sweden
Purpose/objective
The aim is to describe parents' perceptions of their child's symptomburden during and after cancer treatment and to investigate whetherparents' perceptions vary with child characteristics and parent gender.