Symptoms and suffering at the end of life in children with cancer

BACKGROUND: Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer. METHODS: In 1997 and 1998, we interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital, the Dana-Farber Cancer Institute, or both. Additional data were obtained by reviewing medical records. RESULTS: Of 165 eligible parents, we interviewed 103 (62 percent), 98 by telephone and 5 in person. The interviews were conducted a mean (+/-SD) of 3.1+/-1.6 years after the death of the child. Almost 80 percent died of progressive disease, and the rest died of treatment-related complications. Forty-nine percent of the children died in the hospital; nearly half of these deaths occurred in the intensive care unit. According to the parents, 89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea. Of the children who were treated for specific symptoms, treatment was successful in 27 percent of those with pain and 16 percent of those with dyspnea. On the basis of a review of the medical records, parents were significantly more likely than physicians to report that their child had fatigue, poor appetite, constipation, and diarrhea. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care (odds ratio, 2.6; 95 percent confidence interval, 1.0 to 6.7). CONCLUSIONS: Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer.     

Symptom complaints, psychiatric disorder and abnormal illness behaviour in patients with upper abdominal pain

Seventy patients presenting to the gastroenterologist with upper abdominal pain were examined by a psychiatrist to establish the presence of psychiatric disorder, illness behaviour and to record in detail their symptom pattern. The 37 patients who had no organic cause for their abdominal complaints were subdivided into those with and without psychiatric disorder. The former (21 patients) demonstrated more illness behaviour, they complained of more abdominal symptoms and their pain was both more severe and more persistent than in the patients with organic disease and those with non-organic illness who did not have psychiatric disorder. The latter group reported no symptoms of 'psychoneurosis' and should probably be regarded as a separate group if the aetiology of functional abdominal pain is to be clarified. Those with non-organic abdominal complaints who had psychiatric illness could be distinguished by the presence of three symptoms, namely depression, anxiety and fatigue. Detection and treatment of their psychiatric disorder might lead to a decrease in their symptomatic complaints and illness behaviour.     

Cardiac anxiety in patients self-referred for electron beam tomography

Studies have repeatedly shown that as many as 43% of patients undergoing coronary angiograms have no evidence of coronary heart disease (CHD). Fear of cardiac-related sensations has been posited as one explanation for complaints of chest pain in patients without CHD. The purpose of this study is to examine variables associated with cardiac anxiety in a sample of individuals self-referred for noninvasive coronary calcium screening. Nearly one quarter of the subjects screened experienced chest pain in the absence of coronary artery calcium (CAC). Individuals without evidence of CAC were more likely to report higher levels of heart-focused attention, even when subjects with any risk factors for CHD were excluded from the analyses. Men were more likely to have evidence of coronary calcium, although a greater proportion of women reported chest pain. Women generally endorsed higher levels of cardioprotective behavior, heart-focused attention, and fear of heart-related sensations. Findings are discussed in relation to treatment of cardiac anxiety and the prevention of unnecessary medical procedures.     

The association between neuropsychological impairment, self-perceived cognitive deficits, fatigue and health related quality of life in breast cancer survivors following standard adjuvant versus high-dose chemotherapy

OBJECTIVE: The possible association between neuropsychological impairment, self-perceived cognitive deficits, fatigue and health related quality of life has been studied in high-risk breast cancer survivors 5 years following standard adjuvant (n=23) versus high-dose chemotherapy (n=24) and in early-stage breast cancer patients (n=29) (comparison group) following radiation therapy. METHODS: A neuropsychological assessment covering attention, memory and executive functions was used together with the questionnaire for self-perceived deficits in attention (FEDA), the multidimensional fatigue inventory (MFI-20) and the EORTC-QLQ-C30. RESULTS: Findings have shown that neuropsychological impairment is not directly associated with self-perceived cognitive deficits, fatigue and HRQOL. However, 46% of patients reported self-perceived cognitive deficits and 82% of the patients complained about cancer related fatigue. Except for reduced activity we did not find significant group differences, even though patients who received standard-dose chemotherapy had consistently higher levels of self-perceived cognitive deficits and fatigue, and the lowest HRQOL. CONCLUSION: Results emphasize the need for psychosocial counseling and support during treatment phase and follow up care as well. Sensitive cancer-specific measures for the assessment of self-perceived cognitive deficits in different cognitive domains according to neuropsychological measurements are required. PRACTICE IMPLICATIONS: The role of self-perceived cognitive deficits and fatigue should be considered in educational interventions and counseling. Specific rehabilitation measures should be developed, implemented and evaluated in order to meet the needs of these patients and to decrease the frequency of cognitive deficits following cancer treatment.     

Caring for medical students as patients: access to services and care-seeking practices of 1,027 students at nine medical schools. Collaborative Research Group on Medical Student Healthcare.

PURPOSE: The personal health care of medical students is an important but neglected issue in medical education. Preliminary work suggests that medical student-patients experience special barriers to health care services and report problematic care-seeking practices that merit further inquiry. METHOD: A self-report questionnaire was piloted, revised, and distributed to students at nine medical schools in 1996-97. The survey included questions regarding access to health services, care-seeking practices, and demographic information. RESULTS: A total of 1,027 students participated (52% response rate). Ninety percent reported needing care for various health concerns. Fifty-seven percent did not seek care at times, in part due to training demands, and 48% had encountered difficulties in obtaining care. A majority had received treatment at their training institutions, and students commonly pursued informal or "curbside" care from medical colleagues. Almost all participants (96%) were insured. Differences in responses were associated with level of training, gender, and medical school. CONCLUSION: Medical schools shoulder the responsibility not only of educating but also of providing health services for their students. Students encounter barriers to care and engage in problematic care-seeking practices. Greater attention to issues surrounding medical student health may benefit students and their future patients.     

Menopause in Morocco: symptomatology and medical management

OBJECTIVES: To assess the frequency of menopausal symptoms and patterns of recourse to medical care in Rabat, Morocco. METHODS: Face to face interviews with a representative sample of 300 women aged 45-55 years; information was collected on socio-demographic variables, reproductive history, use of health care, symptom checklist, and medical management of menopause. RESULTS: The most frequent complaints are fatigue and hot flashes, each reported by 61% of women, headaches (57%), joint pain (54%), anxiety (44%) and irritability (42%). Hot flashes, but not cardiovascular symptoms, are statistically associated with menopausal status. Only 5% of women in the sample take hormones, and 4% calcium; 13% continue to take contraceptives. The frequency of some symptoms and the use of health care for menopause are influenced by socio-economic factors. CONCLUSIONS: Reports of hot flashes and joint pains are relatively high, but the frequency of use of medical services for menopause is low.     

A comparison of osteopathic spinal manipulation with standard care for patients with low back pain.

BACKGROUND: The effect of osteopathic manual therapy (i.e., spinal manipulation) in patients with chronic and subchronic back pain is largely unknown, and its use in such patients is controversial. Nevertheless, manual therapy is a frequently used method of treatment in this group of patients. METHODS: We performed a randomized, controlled trial that involved patients who had had back pain for at least three weeks but less than six months. We screened 1193 patients; 178 were found to be eligible and were randomly assigned to treatment groups; 23 of these patients subsequently dropped out of the study. The patients were treated either with one or more standard medical therapies (72 patients) or with osteopathic manual therapy (83 patients). We used a variety of outcome measures, including scores on the Roland-Morris and Oswestry questionnaires, a visual-analogue pain scale, and measurements of range of motion and straight-leg raising, to assess the results of treatment over a 12-week period. RESULTS: Patients in both groups improved during the 12 weeks. There was no statistically significant difference between the two groups in any of the primary outcome measures. The osteopathic-treatment group required significantly less medication (analgesics, antiinflammatory agents, and muscle relaxants) (P< 0.001) and used less physical therapy (0.2 percent vs. 2.6 percent, P<0.05). More than 90 percent of the patients in both groups were satisfied with their care. CONCLUSIONS: Osteopathic manual care and standard medical care had similar clinical results in patients with subacute low back pain. However, the use of medication was greater with standard care.     

The frequency and characteristics of chronic widespread pain in general practice: a case–control study

BACKGROUND: Chronic widespread pain is common in the community but is not often diagnosed in primary care. One explanation may be that widespread pain is presented and treated in primary care as multiple episodes of regional pain. AIM: To determine whether patients who consult with multiple regional pain syndromes have characteristics consistent with chronic widespread pain. DESIGN OF STUDY: Case-control study. SETTING: One general practice in North Staffordshire, UK. METHOD: Participants were 148 cases who consulted regularly with different musculoskeletal pains over 5 years, and 524 controls who had not consulted for musculoskeletal pain during the same period. A postal questionnaire survey and medical record review were undertaken. RESULTS: Cases with musculoskeletal pain reported more health problems and higher levels of fatigue than controls, and significantly worse general health and greater sleep disturbance (odds ratios 3.3. and 3.1, respectively). They generally reported more severe symptoms and consulted more frequently for a range of problems, but this was not explained by a general propensity to consult. CONCLUSION: Patients who consult in primary care with multiple regional pain syndromes have similar characteristics to those associated with chronic widespread pain and fibromyalgia. Recognising the need for general approaches to pain management, rather than treating each syndrome as a regional problem of pain, may improve the outcome in such patients.     

A Prospective,Non-interventional Study of Assessment and Treatment Adequacy of Pain in the Emergency Department of a Tertiary Care Cancer Hospital

Introduction:

Pain is the most common reason for emergency department (ED) visits by the cancer patients. Treatment inconsistency and inadequacy are reported worldwide in the management of ED pain. We conducted a non-interventional observational study of 100 patients visiting ED with moderate to severe pain in a tertiary care cancer center.

Aims:

The goal of this study was to describe the characteristics of pain and its treatment by oncologists in ED.

Materials and Methods:

Management of 100 adult patients with complaints of moderate to severe pain was observed by the investigator in ED. Treatment was provided by the doctors of respective oncological services. Later, patients were interviewed by the investigator to collect data about the details of their pain and treatment adequacy.

Results:

On arrival to ED, about 65% patients reported severe pain, however no formal pain assessment was performed and no patient received strong opioids. Poor compliance for prescribed analgesic medications was noted in a large number of patients (31%), primarily due to suboptimal pain relief and lack of awareness. Protocol based analgesic treatment was non-existent in ED. Majority of patients remained in significant pain after 30 min of analgesic administration and 24% patients could never achieve more than 50% pain relief at the time of discharge.

Conclusion:

Due to lack of formal pain assessment and laid down protocols, suboptimal pain management is commonly prevalent in ED. Use of strong opioids continues to be scarce in management of severe pain. There is a need to formulate pain management protocols for ED pain.     

Medical co-morbidity and validity of DSM-IV depression criteria

BACKGROUND: Clinicians have questioned the validity of depression criteria in patients with chronic medical illness, but few empirical data address this question. METHOD: Computerized records identified two samples of managed care patients beginning depression treatment: 235 with diabetes, ischemic heart disease, or chronic obstructive lung disease and 204 without those conditions. Telephone assessments at baseline, 2 months, and 6 months included the Structured Clinical Interview for DSM-IV and other measures of depression severity and functional status. Item Response Theory analyses compared patterns of depressive symptoms across groups and specifically evaluated somatic symptoms (fatigue, change in weight or appetite, psychomotor agitation/retardation, and sleep disturbance) as indicators of depression. Logistic regression examined how change in somatic symptoms during treatment varied between patient groups. RESULTS: Overall item response analysis indicated differential item functioning between groups (chi2=33.7, df=18, p=0.017). Two of eight item-level comparisons were statistically significant; one in the predicted direction (patients with co-morbidity reported more fatigue at low levels of depression: chi2=17.9, df=1, p<0.001) and one in the opposite direction from predicted (patients with co-morbidity reported less psychomotor agitation/retardation at low levels of depression: chi2=8.0, df=1, p=0.005). Observed differences were modest: at the midpoint of the depression severity scale, patients with medical co-morbidity had a 54% probability of reporting fatigue compared to 45% in those without co-morbidity. All four somatic symptoms showed robust improvement with treatment, and this improvement did not differ significantly between patients with and without medical co-morbidity. CONCLUSIONS: We find only limited evidence that fatigue, changes in weight or appetite, psychomotor agitation/retardation, and sleep disturbance are less valid indicators of depression in patients with chronic medical illness. DSM-IV criteria for diagnosis of depression do not require significant modification for patients with medical co-morbidity.     

Characteristics of a palliative care consultation service with a focus on pain in a German university hospital

Background

A minority of patients with incurable and advanced disease receive specialised palliative care. Specialised palliative care services that complement the care of difficult and complex cases ought to be integrated with services that deliver general care for most patients. A typical setting in which this integrative concept takes place is the hospital setting, where patients suffering from incurable and advanced disease are treated in many different departments.The aim of the study is to investigate the profile and spectrum of a palliative care consultation service (PCCS) at a German university hospital with special reference to pain therapy.

Methods

We retrospectively analysed the PCCS documentation of three years.

Results

Most patients were referred from non-surgical departments, 72% were inpatients, and 28% were outpatients. 98% of the patients suffered from cancer. Counselling in pain therapy was one of the key aspects of the consultation: For 76% of all consulted patients, modifications of the analgesic regimen were recommended, which involved opioids in 96%. Recommendations on breakthrough-pain medication were made for 70% of the patients; this was an opioid in most cases (68%). The most commonly used opioid was morphine. For 17% of the patients, additional diagnostic procedures were recommended. Besides pain management palliative care consultation implied a wide range of recommendations and services: In addition to organising home care infrastructure, palliative care services supported patients and their families in understanding the life-limiting diseases. They also coordinated physical therapy and social and legal advice.

Conclusion

This survey clearly shows that for a consultation service to support patients with incurable or advanced disease, a multi-disciplinary approach is necessary to meet the complex requirements of a needs-adapted palliative care in inpatient or outpatient settings. Timely integration of palliative expertise may support symptom control and may give the required advice to patients, their carers, and their families.

     

Assistance from family members, friends, paid care givers, and volunteers in the care of terminally ill patients.

BACKGROUND: In addition to medical care, dying patients often need many types of assistance, including help with transportation, nursing care, homemaking services, and personal care. We interviewed terminally ill adults and their care givers in six randomly selected areas of the United States (five metropolitan areas and one rural county) to determine how their needs for assistance were met and the frequency with which they received such assistance from family members and paid and volunteer care givers. METHODS: The patients, whose physicians estimated them to have less than six months to live and who had clinically significant illness other than human immunodeficiency virus infection or the acquired immunodeficiency syndrome, were referred to the study by their physicians. Of the 1131 eligible patients, 988 (87.4 percent) consented to a detailed in-person interview conducted in English, as did 893 of the 915 eligible primary care givers (97.6 percent). RESULTS: Of the 988 terminally ill patients, 59.4 percent were over the age of 65 years, and 51.5 percent were women. The most frequent terminal illness was cancer (in 51.8 percent of the patients), followed by heart disease (18.0 percent) and chronic obstructive pulmonary disease (10.9 percent). Four percent of the patients were in an institution, such as a nursing home, residential hospice, or hospital; the rest were living in a private residence. A need for assistance was reported by 86.8 percent of the patients; they required help with transportation (reported by 62.0 percent), homemaking services (55.2 percent), nursing care (28.7 percent), and personal care (26.0 percent). Of the care givers, 72.1 percent were women. Primary care givers were family members in 96.0 percent of cases; only 4.0 percent were unrelated. Most patients relied completely on family members and friends for assistance. A total of 15.5 percent of patients relied only on paid assistance for more than half of the types of care that they needed. Volunteers (that is, unpaid helpers who were not family members or friends) provided less than 3 percent of all care. CONCLUSIONS: In our survey of terminally ill patients, family members, usually women, provided the majority of assistance with nonmedical care. Although many people received assistance from paid care givers, very few had assistance from volunteers.     

A controlled trial of transcutaneous electrical nerve stimulation (TENS) and exercise for chronic low back pain

A number of treatments are widely prescribed for chronic back pain, but few have been rigorously evaluated. We examined the effectiveness of transcutaneous electrical nerve stimulation (TENS), a program of stretching exercises, or a combination of both for low back pain. Patients with chronic low back pain (median duration, 4.1 years) were randomly assigned to receive daily treatment with TENS (n = 36), sham TENS (n = 36), TENS plus a program of exercises (n = 37), or sham TENS plus exercises (n = 36). After one month no clinically or statistically significant treatment effect of TENS was found on any of 11 indicators of outcome measuring pain, function, and back flexion; there was no interactive effect of TENS with exercise. Overall improvement in pain indicators was 47 percent with TENS and 42 percent with sham TENS (P not significant). The 95 percent confidence intervals for group differences excluded a major clinical benefit of TENS for most outcomes. By contrast, after one month patients in the exercise groups had significant improvement in self-rated pain scores, reduction in the frequency of pain, and greater levels of activity as compared with patients in the groups that did not exercise. The mean reported improvement in pain scores was 52 percent in the exercise groups and 37 percent in the nonexercise groups (P = 0.02). Two months after the active intervention, however, most patients had discontinued the exercises, and the initial improvements were gone. We conclude that for patients with chronic low back pain, treatment with TENS is no more effective than treatment with a placebo, and TENS adds no apparent benefit to that of exercise alone.     

Spirituality and care of prostate cancer patients: a pilot study

PURPOSE: To explore the integration of spirituality into medical care for African-American men coping with prostate cancer. PROCEDURES: A total of 14 African-American prostate cancer patients completed a self-administered quantitative survey examining the dimension of spirituality as a resource for coping. FINDINGS: A high proportion of survivors reported a general religious orientation as expressed through church affiliation and frequent church attendance. A majority (67%) had spoken with their doctors about their spiritual and religious beliefs and more than half the physicians had solicited their patients' spiritual beliefs as part of their handling of prostate cancer. While one-third of the men reported their doctors had been in contact with their clergy, two-thirds would like their doctor and clergy to be in contact with one another. CONCLUSIONS: This is a pilot study that incorporated both qualitative and quantitative data collection but with the small sample, has limited generalizability. However, this work does suggest that integrating spirituality and religion into medical care may be beneficial to prostate cancer patients. Physicians and physician organizations should engage in future research in this area.     

Crossing borders, crossing cultures: barriers to communication about cancer prevention and treatment along the U.S./Mexico border

OBJECTIVE: To describe cultural barriers to cancer prevention and treatment efforts among Latinos living along the U.S./Mexico border. METHODS: In-depth interviews with 8 Mexican immigrants who are residents of a Texas colonia were conducted to understand the roles of culture and poverty in their experiences with cancer. Questions were asked about participants' cancer experiences, religiosity, medical establishment barriers, and cultural identity. Narrative and thematic analysis was used to highlight dialectical tensions inherent in the stories. RESULTS: The participants' narratives illustrate how poverty and Latino cultural beliefs create barriers to effective cancer prevention and treatment based on: (1) metaphysical beliefs about how they developed cancer and religious beliefs about how it was cured; (2) gender identity and treatment in the U.S. medical system and; (3) national/cultural identity and treatment in the U.S. medical system. CONCLUSION: Structural and cultural barriers interact in complex ways as low-income Latino/a patients and their families attempt to receive cancer care on the U.S./Mexico border. The manner in which these patients negotiate the tensions may reinforce barriers and inability to access health care and should be specifically addressed. PRACTICE IMPLICATIONS: Immigrant populations worldwide are especially vulnerable to health care disparities. Effective cancer prevention and treatment messages must be constructed to help patients and families reconcile cultural and economic tensions in ways that allow them maintain their identities but still receive the necessary health care.     

Further characterization of Shwachman-Diamond syndrome: psychological functioning and quality of life in adult and young patients

To assess psychosocial functioning and quality of life in a representative group of adult and young patients with Shwachman-Diamond syndrome (SDS), all patients 3 years old and over included in the Italian SDS Registry were investigated using an ad-hoc questionnaire for information about demography, education, socialization, rehabilitation therapy, and standardized questionnaires [SF-36, Child Behavior Check-List (CBCL)] for quality of life and behavior. Results were compared with those of a Cystic Fibrosis (CF) patient group, matched for age and sex. Eighty-one percent of patients answered. All but one adult patient lived with their parents, 24% had independent income, and 57% had a driver's license. Different levels (from mild to severe) of cognitive impairment were reported by 76% of the adults and by 65% of the young patients. These data are significantly lower than those of the CF group. Both groups present low scores in the emotional and mental health evaluations at SF-36, but SDS patients reported significantly more limitations in physical functioning (PF) and more body pain (BP) experiences. As reported by parents at CBCL, young SDS patients show more "social problems" (in the clinical area 31% SDS vs. 6% CF), "attention deficits disorder" (29% SDS vs. 0%CF), and "somatic complaints" (24% SDS vs. 12% CF). Psychosocial functioning is impaired in the majority of SDS patients, significantly more than in patients affected by CF.     

Somatic symptoms in primary care: etiology and outcome

Although somatic complaints are the predominant reason for seeking general medical care, their etiology and prognosis remain poorly understood. In a random sample of the records of all patients visiting an urban primary care clinic during four 1-month periods, 289 patients had one or more somatic symptoms, a total of 433 symptoms. Using explicit criteria, physician raters classified nearly half (48%) of the symptoms as either psychiatric or idiopathic in etiology. Reviewing follow-up notes for 12 months after the index visit, raters found that at least one-fourth of the symptoms persisted. Independent predictors of symptom persistence were prior visits for the same symptom, symptom type (i.e., headache or back pain), male gender, and greater medical comorbidity (i.e., seven or more medical diagnoses). Developing better management strategies for prevalent, medically unexplained, persistent somatic symptoms is a health care priority.     

Clinical features,therapeutic outcomes,and recovery period of long COVID

To characterize the clinical features of long COVID, 286 patients who received care in our outpatient clinic for long COVID from May to December 2021 were surveyed. The recovery periods of each symptom and the key factors contributing to early recovery were statistically analysed. The median age of the patients was 35.8 years, with 137 men and 149 women. The median number of symptoms was 2.8. The most frequent symptoms were respiratory manifestations (52.1%), followed by fatigue (51.4%). Respiratory symptoms, fatigue, and headache/arthralgia were major complaints in the initial phase, whereas hair loss was a major complaint in the late phase, suggesting that the chief complaint of patients with long COVID may vary temporally. The best treatment outcome was observed for pulmonary symptoms, and hair loss had the worst outcome. COVID-19 severity, the number of manifestations, and the delay in starting treatment exerted a negative effect on the recovery period of long COVID. In addition, the smoking habit was an independent risk factor for slowing the recovery period from long COVID. This study provides insights into the clinical course of each manifestation and therapeutic options with a more certain future of long COVID to meet the unmet medical needs.     

Course of normal and abnormal fatigue in patients with chronic obstructive pulmonary disease, and its relationship with domains of health status

Objective

To examine the difference between patients with normal and patients with abnormal fatigue on aspects of health status, and investigate the natural course of fatigue in patients with Chronic Obstructive Pulmonary Disease (COPD).

Methods

Fatigue, physiological functioning, functional impairment, symptoms, and Quality of Life (QoL) were measured in 168 patients with COPD, and longitudinal data on fatigue of 77 patients were collected.

Results

Fifty percent of patients had abnormal fatigue. Patients with abnormal fatigue reported significantly more problems on the sub-domains of functional impairment (except actual physical activity), symptoms, and QoL as compared to patients with normal fatigue. With respect to physiological functioning patients with normal fatigue scores had better exercise capacity. Four years later the percentage of patients with abnormal fatigue was increased to 64%. In 1/3 of the patients an increase of more than the minimal clinically important difference was found.

Conclusion

Many COPD patients suffer from abnormal fatigue. Patients with abnormal fatigue have more limitations on many aspects of health status, especially on symptoms, functional impairment, and QoL.

Practice implications

Fatigue should be evaluated in usual care with a questionnaire that corrects for normal fatigue in order to tailor treatment to patients’ need.