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Article Excerpt
Abstract
Objective: To describe wellbeing and nutrition-related side effects in a group of paediatric oncology patients undergoing chemotherapy, and to examine associations with nutritional status, disease and treatment-related factors.
Methods: Cross-sectional survey of patients attending the Sydney (n = 41) or John Hunter Children's Hospitals (n = 13). Wellbeing was assessed using the Multi-attribute Health Status Classification Scheme (MHSCS) and the Play Performance Scale (PPS). Disease and treatment details were obtained through patient and parent interviews and audit of medical records. Nutritional status was assessed using anthropometric and biochemical measurements.
Results: Twenty-four per cent and 33% scored maximum points on the MHSCS and PPS, respectively. Advanced stage of solid tumour or lymphoma was associated with worse MHSCS scores, P = 0.008. Longer time on treatment correlated negatively with PPS scores (r = -0.35; P = 0.030). The most frequent side effects were nausea, decreased appetite, vomiting and changes in taste. While 67% experienced five or more side effects concurrently, the number increased with length of time on treatment (r = 0.38; P = 0.006). Of the 23 patients experiencing five or more side effects, only two had been seen by a dietitian in the previous two months.
Conclusion: Nutrition-related side effects are common in children undergoing chemotherapy, with the number of side effects not decreasing over time. While wellbeing scores were generally satisfactory, those with advanced stage of solid tumour or lymphoma, or with longer time on treatment, reported lower scores. We recommend that all paediatric oncology patients are referred for dietetic review, even those in the later stages of treatment, in order to optimise nutritional status and wellbeing.
Key words: chemotherapy, paediatric oncology, quality of life, side effects, wellbeing.
INTRODUCTION
Because of advances in cancer treatment, survival rates in paediatric patients have improved dramatically over the past 30 years, (1) with five-year survival rates increasing from 45% in the 1970s to 70% in the 1990s. (2) However, although cancer treatments are increasingly effective, they are also intrusive and burdensome for children and adolescents, impacting not only on their nutritional health, but also on their wellbeing, or quality of life (QOL). (3) Invasive procedures, including lumbar puncture and bone marrow aspiration, treatment side effects and frequent clinic visits and hospitalisations, all impact adversely on physical, psychological and social wellbeing. (4,5) The importance of measuring the wellbeing or QOL in patients undergoing cancer treatment has been acknowledged, as information about it could contribute to improvements in management. (6) For example, knowledge about a patient's QOL might influence decision-making regarding choices between alternative treatments, or initiating appropriate intervention if QOL is deteriorating. (6)
Quality of life or wellbeing has, until recently, been underexplored in children with cancer. (7) In the present study, we have opted to use the term 'wellbeing' rather than QOL.
In order to improve wellbeing, treatment, tolerance, growth and clinical outcomes, nutritional support has been recognised as an important, part of the oncology care in children undergoing treatment for cancer. (8-10) Thorough nutritional assessment and monitoring of nutritional status, as well as implementation of nutritional support strategies, are important in order to prevent or treat nutritional deficiencies, to promote normal growth and development, and to improve wellbeing, immune competence and possibly survival. (8,9,11-17)
The aim of the present study was: (i) to describe wellbeing and nutrition-related treatment side effects in a cross-sectional group of paediatric oncology patients; and (ii) to examine any associations with nutritional status and disease and treatment-related factors (stage of cancer, treatment intensity, length of time on treatment and nutritional support).
METHODS
All data collected focused on the two months prior to recruitment.
Sample and recruitment
Eligibility criteria for recruitment in the present study included paediatric oncology patients aged 1-18 years, attending either the Sydney Children's Hospital, Randwick (SCH) or the John Hunter Children's Hospital (JHCH), Newcastle, for chemotherapy. Patients who had completed their treatment within six months prior were also eligible, as it was assumed that their nutritional status and wellbeing would still be affected by the disease and the treatment, and they might still experience some of the side effects associated with their treatment.
Exclusion criteria included termination of treatment more than six months prior to recruitment, and age 18 years. It was assumed that there would be few diagnoses in infants under 1 year of age, and information about dietary intake and blood samples for assessment of nutritional status would be difficult to obtain in this age group. Further exclusions were subsequently set, as the physical and emotional state of the patients and their parents was considered at recruitment. The oncology nurses alerted the researchers about patients in difficult family situations or vulnerable psychological states, and advised not to attempt recruiting these patients. Therefore, it was decided only to approach potential participants for whom an invitation to participate in the present study was considered appropriate.
The patients and their parents were approached in the outpatient clinics and paediatric wards. Detailed information about the study was given both verbally and in writing, and the patients and parents were made aware that participation in the study was voluntary and withdrawal was possible at any stage, without affecting the child's medical care. The patients and their parents were also asked for permission to access the patients' medical records.
During the recruitment period October-December 2000, 60 patients and their parents were invited to participate. Written consent was obtained from 54 patients/parents (n = 41 from SCH and n = 13 from JHCH). The six patients and their parents who refused to participate, all stated the large amount of stress and emotional burden present in their lives as the reason for their refusal.
Measuring wellbeing
The Multi-attribute Health Status Classification Scheme (MHSCS) and the Play Performance Scale (PPS) are among the most frequently used instruments to assess QOL and wellbeing in paediatric oncology patients. The MHSCS has been devised to provide a comprehensive description of the health status of survivors of childhood cancer. (18) The tool is intended to assess physical and mental wellbeing through evaluating the level of function for seven attributes: sensation, mobility, emotion, cognition, self-care, pain and fertility. For each attribute, three to five levels of functioning are defined, ranging from poor to optimum functioning. (18) The best possible score is 6 (where '1' is scored for each attribute), and the worst possible score is 27 (if a '4' or '5' is scored for each attribute).
The PPS, based on the Karnofsky Scale of Performance Status used to measure functional status in adults, was designed to assess general wellbeing and physical performance status in children through rating usual play activity. (19-21) It includes a spectrum of age-appropriate play described with varying participation in active and quiet activities, ranging from 'unresponsive' to 'fully active, normal' functioning. (20) The maximum score is 100 ('fully active, normal') and the worst possible score is ('unresponsive').
The MHSCS was completed by 45 patients/parents, whereas the PPS was completed by 43. The remaining participants did not return the questionnaires, or returned incomplete questionnaires, and were therefore excluded.
Side effects
The patients and their parents...
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