Eleanor Hendershot

Parent Reports of Quality of Life for Pediatric Patients With Cancer With No Realistic Chance of Cure

PURPOSE To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS This cross-sectional study included children between the ages of 2 and 18 years with cancer and no reasonable chance of cure at The Hospital for Sick Children, Toronto, Ontario, Canada. Parents reported quality of life on behalf of their children. Outcomes were the PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. RESULTS Seventy-three parents of children participated. Compared with children who survived more than 6 months (n = 43), those who died at 6 months or fewer (n = 30) had significantly worse physical health (mean difference, 15.9; 95% CI, 1.8 to 30.0; P = .028), more pain and hurt (mean difference, 15.5; 95% CI, 0.9 to 30.0; P = .037), and worse general fatigue (mean difference, 15.8; 95% CI, 2.4 to 29.1; P = .021) and sleep/rest fatigue (mean difference, 16.0; 95% CI, 3.5 to 28.5; P = .013). Among the entire cohort, those with leukemia/lymphoma had worse physical and psychosocial quality of life compared with those with solid or brain tumors. Recent stem-cell transplantation was associated with worse psychosocial health. CONCLUSION Parents of children with cancer reported worse physical health, pain, and fatigue proximal to death. Those with leukemia/lymphoma were at higher risk for impaired quality of life. This knowledge can help in the design of targeted interventions to improve quality of life for children dying as a result of cancer.

Challenges to participation in paediatric palliative care research: a review of the literature.

It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is often challenging. While conducting a study that involved parents of children receiving palliative or end-of-life care, the authors found that there were particular challenges to recruiting these parents. This comprehensive review of the literature aims to address the ethical and recruitment issues of involving parents of children that are receiving palliative or end-of-life care. Key elements, that may maximize completion of research and a more representative sample, are also discussed. These elements include obtaining the opinions on study design and interview script from experienced families and maximizing the partnership between health care professionals and the research team. Palliative Medicine 2007; 21 : 435—440

Measurement of oral mucositis in children: a review of the literature

Goals of workThe assessment of oral mucositis is important. There is a paucity of validated oral mucositis assessment instruments for use in children. This paper reviews the available mucositis measurement tools and their applicability to a paediatric population.Materials and methodsLiterature search of PUBMED™ and bibliography searches identified articles relevant to mucositis measurement tools and the measurement of mucositis in paediatrics.ResultsThe relevant issues in the literature could be grouped into three categories: (1) development and evaluation of oral assessment tools, (2) oral assessment in the paediatric population, and (3) challenges to the assessment of oral mucositis in children. There were numerous validated mucositis assessment scales for use in adults. Only three of these scales have received limited evaluation for use in the paediatric population. The unique challenges presented by the paediatric population are excluded from much of the discussion in the literature.ConclusionThe paper demonstrates the need to consider the issues specific to children. It must be determined whether previously developed tools are ideally suited for children enrolled on mucositis clinical trials.

Challenges of mucositis assessment in children: Expert opinion

Mucositis is a challenging treatment-related complication in children receiving therapy for cancer. The conduct of clinical trials that investigate mucositis prevention and treatment requires adequate evaluation of the oral cavity. However, few instruments to measure mucositis in children have been appropriately developed or evaluated. A focus group of nine health care professionals with expertise in mucositis assessment, oral assessment in children and paediatric cancer aimed to determine the challenges and possible solutions to mucositis assessment in children. The results led to the identification of several areas of concern that included: (1) challenges in oral assessment in children related to age and cooperation, (2) the need for proxy responses while recognizing the challenges of reporting pain and function attributed to oral mucositis, (3) the need for an instrument that is simple, quick to complete, and easy to use in almost all children and (4) educational considerations. The results provide a basis from which guidelines for the oral assessment of mucositis in children can begin. This information could be used to aid in the development of a new scale for the assessment of oral mucositis in children.

Establishing literature-based items for an oral mucositis assessment tool in children.

Although there are numerous instruments for oral mucositis (OM) assessment in adults, there is a lack of validated instruments for use in children. The objectives of this systematic review were to describe literature-based items that should be considered for a pediatric mucositis scale and other issues that should be considered when assessing mucositis in children. Literature search of PubMed and bibliography searches identified articles relevant to the assessment of mucositis and mucositis assessment studies in children. The elements established from the literature were grouped under objective, subjective, and functional items. Other issues that require consideration include the conditions for the assessment of the oral cavity and the etiology of OM. The resultant list included 23 items that have been used in mucositis assessment scales. This list of items may be used as an initial step in developing a new pediatric OM scale that particularly focuses on the unique issues in children.

Concordance between couples reporting their child's quality of life and their decision making in pediatric oncology palliative care.

In children 18 years and younger with cancer and no reasonable chance for cure the authors used a cross-sectional study design to (1) describe concordance between fathers’ and mothers’ evaluation of quality of life (QoL) and (2) determine parental correlation for how factors such as hope, anticipated QoL, and prolonged survival time influence decisions between supportive care alone versus aggressive chemotherapy. Both parents of 13 children performed PedsQL 4.0 Generic Core Scales, Acute Cancer Module, and Multidimensional Fatigue Scale. Concordance was assessed using intraclass correlation coefficient (ICC). Parents reported preferences of supportive care versus aggressive chemotherapy in a hypothetical scenario and rated factors that influenced decision making. Concordance was variable across QoL domains, better for physical health (ICC = 0.46), nausea (ICC = 0.61), general fatigue (ICC = 0.50), and sleep/rest fatigue (ICC = 0.76). Correlation was variable between parents on the influence of factors on their decision, with particularly poor correlation for importance of hope (r = −0.24). Variable concordance was reported between parental assessment of child QoL and factors influencing their decision making, suggesting parents may have different perspectives in decision making and that understanding both is important in clinical care.

Designing an oral mucositis assessment instrument for use in children: generating items using a nominal group technique

Goals of workThere was a need to develop a mucositis instrument that would be specific for use with children. This paper describes the step of generating items in the process of developing a new instrument for the assessment of oral mucositis in children.Materials and methodsNine health care professionals with expertise in pediatric cancer, mucositis assessment, and oral assessment in children were invited to participate in a nominal group technique to generate items that should be included in an instrument.ResultsThirty items were generated initially. Voting processes established that six of these items were thought to be necessary for inclusion: (1) presence of ulcers, (2) pain assessment, (3) amount of pain medication received, (4) effect on eating, (5) drooling–pooling of saliva, and (6) effect on drinking. Using these six items, an initial draft of an instrument was developed that could be used to assess oral mucositis in children, namely, the Children’s International Mucositis Evaluation Scale.ConclusionThe six items generated by this process provided the basis for a simple, feasible, and reliable instrument. With increased clinical research investigating interventions to reduce and prevent oral mucositis, such an instrument will be critical to the effective conduct of this research in children. Further testing of this instrument is necessary.

Understandability, Content Validity, and Overall Acceptability of the Children's International Mucositis Evaluation Scale (ChIMES) Child and Parent Reporting

Mucositis assessment in children has primarily relied on assessment tools that have been developed for an adult population. A mucositis assessment scale for use in children has previously been developed from expert opinion, namely Childrens International Mucositis Evaluation Scale (ChIMES). After the development of ChIMES, we aimed to evaluate the user perspective of the scale by testing the understandability, content validity, and overall acceptability of ChIMES working with parents, children, and teenagers as content experts. Overall acceptability of the scale was satisfactory; however, comments provided by the participants questioned several aspects of the initial version of ChIMES. After discussion of the results, a refined version of ChIMES was produced that accounts for the views of the target population.

Tumor Necrosis in Pediatric Osteosarcoma: Impact of Modern Therapies

Tumor necrosis following preoperative chemotherapy in patients with osteosarcoma is a predictor of overall survival. With modern therapies, 45% of patients are expected to achieve more than 90% tumor necrosis. Investigators at the authors’ center, however, increasingly noted that patients were experiencing inferior necrosis responses. A retrospective study of treated patients at the center was undertaken to examine this. The purpose of this study was to determine (1) whether the number of patients with favorable histological responses had changed over time and (2) whether the percentage of patients with favorable responses was similar to published outcomes. Chart reviews were performed on patients treated from 1993 to 2003 according to the Pediatric Oncology Group 9351, regimen A protocol. Twenty-one patients met all eligibility requirements; 52% of patients had more than 90% necrosis. No correlation existed between degree of necrosis and year of treatment (r = 0.06; P = .8). Patients with osteosarcoma treated at the authors’ institution have comparable tumor necrosis responses to published outcomes, and no change occurred over time. This study stresses the importance of rigorous retrospective reviews before implementing treatment changes.

A Feasibility Pilot Trial of Individualized Homeopathic Treatment of Fatigue in Children Receiving Chemotherapy

Background. Fatigue is a major problem in children with cancer. The objective was to examine the feasibility of performing a clinical trial of homeopathic treatment for fatigue in children receiving chemotherapy. Materials. This was a single-institution, open-label, pilot study. Children 2 to 18 years old, diagnosed with cancer, and receiving chemotherapy were eligible. Participants were given individualized homeopathic treatment for a maximum of 14 days. In-home or clinic assessments were conducted up to 3 times weekly. Feasibility was defined as the ability to recruit and administer homeopathy to 10 participants within 1 year. Fatigue was measured using the Symptom Distress Scale daily and the PedsQL Multidimensional Fatigue Module weekly. Results. Between April 2012 and April 2014, 155 potential participants were identified. There were 45 eligible and contacted patients; 36 declined participation, 30 because they were not interested; 9 agreed to participate, but 1 participant withdrew prior to treatment initiation. Median length of homeopathic treatment was 10.5 (range = 6 to 14) days. All parents found homeopathic treatment to be easy or very easy to follow. Conclusions. Trials of individualized homeopathy for fatigue reduction in pediatric cancer are not feasible in this context; lack of interest was a primary reason. Alternative approaches to evaluating homeopathy efficacy are needed.