The measurement of symptoms in children with cancer

The purpose of this study was to determine symptom prevalence, characteristics, and distress in children with cancer. The Memorial Symptom Assessment Scale (MSAS) 10-18, a 30-item patient-rated instrument adapted from a previously validated adult version, provided multidimensional information about the symptoms experienced by children with cancer. This instrument was administered to 160 children with cancer aged 10-18 (45 inpatients, 115 outpatients). To confirm the instrument's reliability and validity, additional data about symptoms were collected from both the parents and the medical charts, and retesting was performed on a subgroup of inpatients. Patients could easily complete the scale in a mean of 11 minutes. The analyses supported the reliability and validity of the MSAS 10-18 subscale scores as measures of physical, psychological, and global symptom distress, respectively. Symptom prevalence ranged from 49.7% for lack of energy to 6.3% for problems with urination. The mean (+/- SD) number of symptoms per inpatient was 12.7 +/- 4.9 (range, 4-26), significantly more than the mean 6.5 +/- 5.7 (range, 0-28) symptoms per outpatient. Patients who had recently received chemotherapy had significantly more symptoms than patients who had not received chemotherapy for more than 4 months (11.6 +/- 6.0 vs. 5. 2 +/- 5.1), and those patients with solid tumors had significantly more symptoms than patients with either leukemia, lymphoma, or central nervous system malignancies (9.9 +/- 7.0 vs. 6.8 +/- 5.5 vs. 6.8 +/- 5.0 vs. 8.0 +/- 6.1). The most common symptoms (prevalence > 35%) were lack of energy, pain, drowsiness, nausea, cough, lack of appetite, and psychological symptoms (feeling sad, feeling nervous, worrying, feeling irritable). Of the symptoms with prevalence rates > 35%, those that caused high distress in more than one-third of patients were feeling sad, pain, nausea, lack of appetite, and feeling irritable. Subscale scores demonstrated large variability in symptom distress and could identify subgroups with high distress. The prevalence, characteristics, and distress associated with physical and psychological symptoms could be quantified in older children with cancer. The data confirm a high prevalence of symptoms overall and the existence of subgroups with high distress associated with one or multiple symptoms. Symptom distress is relatively higher among inpatients, children with solid tumors, and children who are undergoing antineoplastic treatment. Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in clinical chemotherapeutic trials. Symptom epidemiology may also provide a focus for future clinical trials related to symptom management in children with cancer.     

The effects of guided written disclosure on psychological symptoms among parents of children with cancer

This study examines whether structured writing about receiving a diagnosis and treatment for pediatric cancer reduces distress among highly distressed parents of children with cancer (PCWC). Eight PCWC completed measures of posttraumatic stress symptoms (PTSS) and depressive symptoms at two baselines, and again after writing, with 1-month gaps between assessments. Using a guided disclosure protocol (GDP), parents were asked to write about receiving the diagnosis first in a chronological manner, then to explicitly label their emotions at the time of diagnosis and explain the impact of the child's illness on their life. Finally, they were asked to reflect on current feelings, future coping ability, and personal growth. Although symptoms of distress did not change between baselines, significant reductions were found in PTSS from the first baseline to postwriting, but not in depression. This preliminary study suggests that the GDP may reduce PTSS in distressed PCWC.     

Mistaken identity ... is it epiglottitis or croup?

Acute respiratory distress in children is a terrifying experience for both the child and the parents. It also poses a tremendous challenge to nurses and physicians who must diagnose and treat the child's illness. Although the cause of acute respiratory distress in children can vary, the initial symptoms can all look the same to even the most experienced practitioner. Epiglottitis, a potentially life-threatening bacterial infection, often masquerades as the more common and less severe viral illness croup.     

Procedural distress in children with cancer: self-report, behavioral observations, and physiological parameters

OBJECTIVES: To examine the relationship among different indicators of pain and distress, including self-report, behavioral observations, and physiological parameters, in children with cancer undergoing invasive procedures. METHODS: Forty-eight children between the ages of 3.1 and 17.7 years were evaluated while undergoing lumbar punctures. Self-report measures assessed anxiety, pain, self-efficacy, expectations of coping strategies, and coping self-efficacy. Parents reported on their own and their child's levels of anxiety, and physicians estimated their own level of stress and technical difficulty in completing the procedure. Behavioral observations were made prior to, during, and after the procedure. Physiological parameters included heart rate, cardiac vagal tone, and salivary cortisol. At the discretion of attending physicians, 32 children received deep sedation, 9 received light sedation, and 7 received cognitive-behavioral strategies with topical anesthetic as interventions to manage procedural distress. RESULTS: There was a high degree of consistency within self-report, behavioral, and physiological parameters, but correlations between measures in different modalities were low. There were floor effects for most behavioral and self-report measures of distress. Cortisol showed marked changes preprocedure to postprocedure, demonstrating high levels of physiological response despite lack of apparent or perceived discomfort. Heart rate was significantly lower in the group using cognitive-behavioral techniques, especially at the point of needle insertion. DISCUSSION: Self-report measures, behavioral indicators, and physiological changes are not interchangeable outcomes. Treatment strategies were effective for minimizing subjective and behavioral distress, but not necessarily for physiological reactions. Future research should focus on individual differences in these responses, and treatment outcome studies aimed at reducing distress must be clear about the specific goals of intervention.     

Assessment of fatigue in and care needs of Turkish women with breast cancer

Using Piper's Integrated Fatigue Model, this research project was planned to determine the level of fatigue experienced by Turkish women with breast cancer undergoing adjuvant chemotherapy, to discover the factors affecting fatigue, and to provide a reference by means of which an effective nursing care for such patients could be planned. In assessing the level of fatigue and factors affecting it, a patient information form, the Piper Fatigue Scale, and the Rotterdam Symptom Checklist were used. The reliability tests performed afterwards showed that the scales are appropriate tools for use in Turkish women with breast cancer. Before treatment, psychological symptoms' distress was higher than physical symptoms' distress. However, following treatment, the latter was found to be closer to the former. When pretreatment and posttreatment physical and psychological symptoms were compared, it was noticed that fatigue, nausea, anorexia, vomiting, constipation, depression, and loss of hope for the future were among the symptoms observed to increase the most in the posttreatment period. Different from the other studies, we determined that all of the patients experienced fatigue 7 to 10 days after the chemotherapy cycle and the sensory/affective fatigue scores were high. Breast cancer patients undergoing chemotherapy experienced a moderate level of fatigue, which was influenced by level of income, stage of disease, and symptoms related to chemotherapy, showing compliance with similar studies. Following up patients individually and keeping the treatment-related symptoms under control were noticed to help prevent fatigue.     

The effects of a companion animal on distress in children undergoing dental procedures

The purpose of our pilot study was to evaluate the effects of a companion animal (dog) on physiologic arousal and behavioral distress among children undergoing a dental procedure. A repeated measures experimental design was used to study 40 children between the ages of 7 and 11 years who were undergoing procedures in a pediatric dental clinic. Half the children had the dog present during the procedure and half did not. Data were obtained before, during, and after the procedure. Behavioral distress was measured using the Observational Scale of Behavioral Distress; procedures were videotaped. Physiologic arousal was measured using a YSI telethermometer taped to the child's index finger. Student's t-test and repeated measures analysis of variance were used to answer the research question. No significant differences in behavioral distress or physiologic arousal were found between experimental and control groups. Further analysis revealed that for children who initially verbalized distress on arrival at the clinic, the presence of the dog decreased physiologic arousal during the time the child was on the dental table waiting for the dentist to arrive. Further research should be conducted to verify the effect of a companion animal on initial stress experienced by children for whom the visit to the dentist is most stressful.     

Caring for adoptive families: lessons in communication

PURPOSE: To describe the experiences of families whose adopted children were hospitalized and to compare those experiences to the experiences of families of hospitalized biological children. METHOD: The parents of 10 adopted and 55 biological children participated in the study in which the source and intensity of stress for parents and the level of distress demonstrated by the children during their hospitalization were measured and compared. RESULTS: Adopted children hospitalized for the first time were significantly more distressed during hospitalization than biological children hospitalized for the first time. Adoptive parents experienced significantly more stress than biological parents related to how staff communicated with them about their child's illness. Concerns identified by several adoptive families included difficulties associated with having limited information about their child's family medical history and concerns about attachment issues. CONCLUSIONS: Health care providers need to be aware of adoptive parents' concerns about their child's response to hospitalization, attachment issues, and limited family medical history. The quality of communication with adoptive parents is especially important.     

Assessing procedural pain in children with cancer in Beirut, Lebanon.

This study describes the relationship between different indicators of pain, including self-reports, behavioral observations, and physiological measures, in children with cancer undergoing invasive procedures. Forty-five children between the ages of 4 and 10 years were evaluated while undergoing Port-a-Cath access. The study was conducted in the outpatient clinics of the Children's Cancer Center in Beirut, Lebanon. Children used 2 self-report measures of pain (the Wong-Baker FACES Pain Rating Scale and an adaptation of the FACES, the DOLLS). Parents and nurses assessed the child's pain on the FACES and the child's distress on the Observational Scale of Behavioral Distress-Revised. Nurses recoded behavioral observations as well as physiological responses to pain. There was a high degree of consistency between the self-reports and moderate to high correlations between self-reports, behavioral parameters, and physiological parameters, suggesting that accurate pain assessments can be made by both nurses and parents. The results also demonstrate adequate validity and reliability of the DOLLS scale in a Lebanese population, in addition to being the preferred assessment tool for all the children in the study.     

The measurement of symptoms in young children with cancer: the validation of the Memorial Symptom Assessment Scale in children aged 7-12.

Few studies have attempted to describe the experience of symptoms in young children with cancer. This is due, in part, to the lack of validated symptom assessment scales for this patient population. The objective of this study was to evaluate the reliability and validity of a revised Memorial Symptom Assessment Scale (MSAS) in patients aged 7-12 as an instrument for the assessment of symptoms in young children with cancer. The MSAS (7-12) was administered to 149 children (inpatients and outpatients) who were undergoing treatment at either the Royal Marsden NHS Trust, London, United Kingdom or The Children's Hospital at Westmead, Sydney, Australia. Validity was evaluated by comparison with the medical record, parental report, and concurrent assessment on visual analogue scales for selected symptoms. The data provide evidence of the reliability and validity of MSAS (7-12) and demonstrate that children with cancer as young as 7 years can report clinically relevant and consistent information about their symptom experience. Young children with cancer experience multiple symptoms. Approximately one-third had experienced lethargy and/or pain and/or insomnia during the 48 hours prior to the completion of MSAS (7-12). The completion rate for MSAS (7-12) was high and the majority of children completed the instrument in a short period of time and with little difficulty. The instrument appears to be age appropriate and may be helpful to older children unable to independently complete MSAS (10-18). Systematic symptom assessment may be useful in future epidemiological studies of symptoms and in cancer chemotherapy drug trials.     

Quality of life, symptom experience and distress of lung cancer patients undergoing chemotherapy

The diagnosis of lung cancer in the advanced stage of illness, the poor prognosis associated with the disease, and the side effects of chemotherapy all have an impact on various dimensions of quality of life (QoL).

The purpose of the research

The current study was designed to describe the QoL and symptom distress of lung cancer patients undergoing chemotherapy and to explore the relationships between demographic/treatment-related characteristics and QoL.

Methods and sample

The sample consisted of 154 lung cancer patients undergoing chemotherapy. The symptom experiences and QoL of lung cancer patients undergoing chemotherapy were evaluated using the Memorial Symptom Assessment Scale and Quality of Life Index – Cancer Version.

Results

The lung cancer patients had low QoL scores. The scores on the Health and Functioning subscale were the lowest (20.33 ± 5.59), while those of the Family subscale were the highest (27.66 ± 2.77). The most common physical symptoms experienced by lung cancer patients were lack of energy, coughing, pain, lack of appetite, and nausea, while the psychological symptoms were feeling nervous, difficulty sleeping, feeling sad, and worrying. There was a negative relationship between the symptom distress and quality of life scores (r = −0.45; p < 0.000). Females and those with low income levels and performance status experienced greater symptom distress.

Conclusions

Lung cancer patients receiving chemotherapy suffer many limitations due to the symptoms and disruptions to their QoL, arising from both the disease process and its treatment. Lung cancer patients need to be assessed regularly and supported.     

Using self-regulation theory to develop an intervention for cancer-related fatigue

Fatigue is a common and distressing symptom for patients undergoing cancer treatment, with reported incidences as high as 96%. According to self-regulation theory, inadequate management of the symptom of fatigue may lead to increased fatigue distress among patients with cancer. The purpose of this article is to describe a theory-based educational intervention developed to help patients manage their fatigue more effectively, with the goal of decreasing the distress that fatigue causes for patients receiving outpatient cancer treatment. Further, this article describes the role of self-regulation theory in guiding intervention development to reduce fatigue distress and improve outcomes for patients with cancer. The intervention is designed to be delivered before the patient's first cancer treatment.     

Parents' perceptions of support when a child has cancer: a longitudinal perspective

Previous research has shown perceived social support to be important for maintaining psychological well-being. However, severe stress may influence a person's perception of the availability and value of support from others. In this prospective study, we investigated changes in subjectively perceived social support among parents of children with cancer. Furthermore, we examined the role of parent gender and emotional distress (anxiety and depression) in predicting change in perceived support. Fifty-one parents (29 mothers and 22 fathers) participated. Perceived support, anxiety, and depression were assessed with self-report questionnaires. Parents were examined on 2 occasions. The initial assessment was completed within the first 6 months of the child's cancer treatment. At the time of the follow-up assessment 12 to 24 months later, cancer treatment was completed for all patients. On a group level, parents reported significantly poorer perceived support at the second assessment. However, further examination showed that for one fourth of the group, perceived support was improved. Depressive symptoms during the child's treatment predicted decline in perceived support. Anxiety and gender were not predictive of a change in perceived support.A comprehensive pediatric care model should pay particular attention to parents with a tottering perception of social support. Furthermore, the findings underscore the importance of early psychosocial attention to avoid negative long-term consequences of depression. Being in the frontline of patient care, the pediatric oncology nurse plays an important role in identifying early parents at risk and in shaping parents' perception of support.     

癌症患儿症状体验的现况调查

目的:评估和描述癌症患儿症状的发生率、频率、严重度和困扰度。方法:对125名4岁及以上的癌症患儿使用记忆症状量表进行自我评估或家长代评。结果:其症状发生率从1.6%(吞咽困难)到76.8%(出汗);最常发生(发生率≥40%)的症状包括:出汗、缺乏体力、没有食欲、急躁易怒、疼痛、恶心、感到紧张、体重下降、口干和咳嗽;在发生率<40%的症状中,困扰度较高(≥40%)的症状包括:小便有问题、吞咽困难、呕吐和口腔溃疡。处于治疗期的患儿其症状出现数量(11.35±4.10)多于未开始治疗或休疗的患儿(8.15±4.43),且不同治疗状态患儿的生理症状维度得分和总得分上差异有统计学意义(P<0.01)。结论:癌症患儿症状普遍存在,且极易受各种身心症状的困扰。运用多维的工具进行系统性的症状评估,可获得更多关于症状体验方面的信息,进而有利于医护人员更加有针对性地采取干预措施,以完善护理实践。     

Symptom indexes to assess outcomes of treatment for early prostate cancer

BACKGROUND: Patients' perceptions of treatment outcomes are important in the management of early prostate cancer, but few studies have offered reliable and responsive measures to assess the likely side effects of the most common treatments. OBJECTIVE: To develop indexes of urinary, bowel, and sexual function, and related distress. RESEARCH DESIGN: Prospective cohort study of the outcomes of treatment for early prostate cancer, with self-administered questionnaires completed before treatment, and 3 and 12 months afterward. Hypothesized indexes, based on a clinical model of pathophysiological side effects of treatment, were defined and evaluated with respect to reliability and validity. SUBJECTS: Patients (n = 184) undergoing radical prostatectomy or external beam radiotherapy for early prostate cancer. MEASURES: Urinary and bowel items pertained to frequency or intensity of symptoms of dysfunction; parallel items assessed symptom-related distress. Sexual dysfunction items assessed the quality of erections, orgasm, and ejaculation; distress was assessed by 2 items adapted from the MOS Sexual Problems (MOS-SP) scale. HRQoL was assessed by the SF-36 and Profile of Mood States. RESULTS: Symptom and symptom-related distress indexes for urinary incontinence, urinary obstruction/irritation, bowel dysfunction, and sexual dysfunction were defined. Symptom and distress indexes in each domain were highly correlated. Responsiveness was substantial and varied by treatment in ways consistent with clinical experience. The indexes accounted for significant proportions of the variance in HRQoL measures. CONCLUSIONS: These indexes may be used in monitoring outcomes of treatment for early prostate cancer.     

Symptoms suffered by life-limited children that cause anxiety to UK children's hospice staff

BACKGROUND: Very little is published about the symptom profile of children with life-limiting illnesses other than cancer. METHOD: A postal questionnaire was sent to children's hospice staff who were asked to identify symptoms experienced by life-limited children which caused them anxiety. RESULTS: Staff in 23 hospices were sent questionnaires. Twenty-eight questionnaires were returned from 10 doctors and 18 nurses. Just under half of the hospices contacted were represented. The staff were very experienced but had significant anxieties about treating some of their patients. AIMS: This study aimed to identify the symptoms which cause anxiety to staff working in children's hospices. More than 70% of all staff groups felt that identifying the symptom correctly caused more anxiety than treating identified symptoms. For doctors the top five symptom problems were, seizure control, spasms, pain assessment, unidentified distress and vomiting. For nurses the main concerns were the non-verbal child in distress, psychiatric or psychological problems, assessing pain, seizures, pain management, vomiting. CONCLUSIONS: Doctors and nurses perceive seizures, pain management, and vomiting as the most troublesome symptoms for children with life-limiting conditions. Further research is needed into symptom management in this area.     

The concept of suffering in children and adolescents with cancer.

Survival rates for childhood cancer have increased over the past 2 decades, due in large part to the increase in the intensity and complexity of the treatment modalities used. We can presume that this increase in intensity has produced increased distress or suffering (physical, psychological, social, and spiritual) in the child or adolescent undergoing these therapies for cancer. However, measurement of suffering is more than symptom occurrence, frequency, duration, and severity. An analysis of the concept of suffering is presented. Suffering needs to be defined and measured by self-report (as opposed to parent or staff report) to gain an accurate, complete holistic picture of the nature and scope of the child's and adolescent's suffering. Knowledge of how children and adolescents experience suffering would enable practitioners to design interventions to prevent or ameliorate this suffering.     

Exploration of variables related to children's behavioral distress during electrodiagnosis.

To investigate variables potentially related to children's distress during electromyography/nerve conduction studies (EMG/NCS), mothers of 39 children ages two to 17 years reported the child's gender, experience with EMG/NCS, previous negative medical/dental experiences, general response to painful procedures, information-seeking style prior to procedures, health care fears, and information about the mothers' own health care fears and their anxiety regarding EMG/NCS. Physicians who performed the studies completed a behavioral distress checklist for each child. Results indicated that children exhibiting more behavioral distress were younger, had been uncooperative with previous painful procedures, were more likely to have had more negative medical/dental experiences, and had mothers who themselves reported greater fear and anxiety about undergoing EMG/NCS. Regression analyses indicated that previous negative medical/dental experiences accounted for additional variance in distress beyond that attributed to the child's age. Significant positive correlations between children's distress and specific previous negative medical/dental experiences were found.     

I-CAN SLEEP: rationale and design of a non-inferiority RCT of Mindfulness-based Stress Reduction and Cognitive Behavioral Therapy for the treatment of Insomnia in CANcer survivors

Individuals with cancer are disproportionately affected by sleep disturbances, relative to the general population. These problems can be a consequence of the psychological, behavioral and physical effects of a cancer diagnosis and treatment. Sleep disturbances often persist for years and, when combined with already high levels of cancer-related distress, may place cancer survivors at a higher risk of future psychopathology, health problems and poorer quality of life. It is important to develop and evaluate treatments that comprehensively address the common symptom profiles experienced by cancer survivors. METHODS: This study is a randomized controlled non-inferiority trial comparing Cognitive Behavior Therapy for Insomnia (CBT-I; a known efficacious treatment) to Mindfulness-Based Stress Reduction (MBSR; a treatment with demonstrated potential). This design can efficiently compare these two treatments directly and determine whether MBSR performs to the same standard as CBT-I for the treatment of insomnia with additional benefits of reducing cancer-related distress. Participants are randomly assigned to an 8-week CBT-I or MBSR group. Sleep indices are measured using subjective (sleep diaries) and objective (actigraphy) assessment tools. The primary outcome is insomnia severity. Secondary outcomes include sleep quality, symptoms of stress, mood disturbance, mindfulness, and dysfunctional beliefs and attitudes toward sleep. Assessments are completed at three time periods: pre-treatment, post-treatment and at 3month follow up. CONCLUSIONS: Considering the high prevalence of distress and sleep disturbances in the cancer population, should MBSR produce sleep effects comparable to CBT-I, it may be more comprehensive - making it the treatment of choice for addressing cancer-related psychological sequelae.     

Symptom management research in children with cancer.

A review of the clinical research studies published within the past 5 years revealed that efforts to manage symptoms of cancer and its treatments have not kept pace with new advances in the cure for cancer. Children with cancer continue to experience distressing physical symptoms caused by the disease and treatment. The purpose of this article is to provide a concise overview of the most common symptoms experienced by children with cancer. These symptoms include pain, nausea and vomiting, nutritional concerns, mucositis, and fatigue experienced by the child with cancer. Recommendations for future research are addressed.