Life Issues In Patients Research Articles

Review on Quality of Life Issues in Patients with Primary Brain Tumors

Health-related quality of life (HRQOL) has become an important outcome measure in clinical trials in primary brain tumor (i.e., glioma) patients, because they have an incurable disease. HRQOL is assessed using self-reported, validated questionnaires, addressing physical, psychological, emotional, and social issues. In addition to generic HRQOL instruments, disease-specific questionnaires have been developed, including for brain tumor patients. For the analysis and interpretation of HRQOL measurements, low compliance and missing data are methodological challenges. HRQOL in glioma patients may be negatively affected by the disease itself as well as by side effects of treatment. But treatment with surgery, radiotherapy, and chemotherapy may improve patient functioning and HRQOL, in addition to extending survival. Although HRQOL has prognostic significance in brain tumor patients, it is not superior to well-known clinical parameters, such as age and performance status. In clinical practice, assessing HRQOL may be helpful in the communication between doctor and patient and may facilitate treatment decisions.

Quality of life of patients with oesophageal cancer in Taiwan: validation and application of the Taiwan Chinese (Mandarin) version of the EORTC QLQ-OES18: a brief communication

The aim of this study was to examine the reliability and validity, and the application of the Taiwan Chinese Version of the EORTC QLQ-OES18. The authors translated the questionnaire according to the guideline of the EORTC. Ninety-five patients with oesophageal cancer in National Taiwan University Hospital were interviewed using the questionnaire and the EORTC QLQ-C30 between October 2002 and September 2007. Answer distribution and psychometric properties of the EORTC QLQ-OES18 were examined. The mean age of the patients was 60 years (SD 12 years). Most of the patients were in advanced stages of disease, with two-thirds off-treatment. The Cronbach's alpha coefficients were satisfactory (0.77-0.82) or near-satisfactory (pain: 0.67). The item-to-own and item-to-other scale correlations showed satisfactory results. Patients who were on-treatment versus off-treatment had significantly poorer quality of life scores in dysphagia, dry mouth, and taste, and a borderline poorer score in cough. Opposite situations were seen in the scales of reflux and choking. The EORTC QLQ-OES18 is a valid instrument to assess quality of life issues in patients with oesophageal cancer in Taiwan.

318 Raising end of life issues in patients with advanced cancer

318 Raising end of life issues in patients with advanced cancer

Depression and quality of life issues in patients with amyotrophic lateral sclerosis

Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease that usually results in death secondary to respiratory failure. The psychological reaction to the diagnosis of ALS in patient and caregiver has received increasing attention. Reports are highly variable as to the severity of depressive symptoms in patients with ALS. When they exist, depressive symptoms can be managed with pharmacologic interventions. Recognizing cognitive impairment is essential in the management of patients with ALS. Quality of life assessments have been used to further evaluate the reaction to the disease. Maintaining a meaningful quality of life centers on psychological, supportive, and spiritual factors, as opposed to physical status. In addition to the patient's reaction, there are a variety of responses experienced by caregivers. Clinicians should provide appropriate support to the caregivers of the patients during the course of the illness and after death.

Quality of life outcomes in laryngeal and oropharyngeal cancer patients after chemoradiation

The purpose of this study was to compare quality of life issues in patients with advanced laryngeal versus oropharyngeal cancer after treatment with chemoradiation. A cohort study of 31 patients with laryngeal or oropharyngeal squamous cell carcinoma treated with chemoradiation completed the University of Washington quality of life instrument version 4 (UW-QOL v4). Statistical analysis was performed with Wilcoxon rank sum and chi-square tests. Academic tertiary care center. Both groups reported similar impairment in the domains of swallowing, chewing, and taste. Oropharyngeal cancer patients reported significantly worse quality of life in the domain of saliva (P < 0.007). Swallowing, chewing, and taste were adversely affected by chemoradiation for both groups. Oropharyngeal patients experienced significantly worse problems with saliva than laryngeal patients. These patients reported high levels of satisfaction with health-related quality of life issues. Specific head and neck subsites have different morbidities when treated with primary chemoradiation for advanced tumors.

What are the important health-related quality of life issues in patients diagnosed with indolent lymphoma?

18574 Background: Numerous treatment options are available for indolent lymphoma (IL), including watchful waiting, each with unique, longer term therapeutic and health-related quality of life (HRQL) issues. No validated HRQL questionnaire currently exists to assess the full range of issues that impact an IL patient’s QoL. We sought to fully assess these important areas to inform decisions about the use of a HRQL questionnaire in clinical studies. Methods: Five focus groups (n = 33), supplemented by in-depth one-on-one telephone interviews (n = 19) were conducted with IL patients across the US. Results: A total of 52 IL patients (65% female; mean age 53 years) participated and completed a questionnaire. Mean time since diagnosis was 51 months; 83% had received active treatment since diagnosis. Participants belonged to one of the following treatment categories: Watchful Waiting (17%), Actively Being Treated (50%), and Previously Treated (33%). Patients identified 4 domains and issues (see Table ) common across all patients regardless of treatment category. Treatment-specific issues included lack of control over the disease with watchful waiting vs. taking control, and actively fighting the disease with a specific treatment. Results from the questionnaire will be presented. Conclusions: Further elucidation of these issues is needed to facilitate HRQL evaluation in future studies and better inform treatment decisions. [Table: see text] [Table: see text]

Quality of life issues in patients with implantable cardioverter defibrillators: driving, occupation, and recreation.

In the United States over 350,000 individuals die annually from sudden cardiac arrest due to ventricular tachyarrhythmias. Numerous large-scale clinical trials have consistently demonstrated that implantable cardioverter defibrillators (ICDs) reduce mortality among appropriately selected patients who have survived an episode of potentially life-threatening ventricular arrhythmia (secondary prevention) or are at risk for ventricular arrhythmia (primary prevention). Despite the demonstrated success of the ICD, many patients often experience unique physical, emotional, and psychosocial needs that can directly impact their overall quality of life (QOL). The most common psychological disturbances following ICD implantation include stress, anxiety, depression, or fear, typical of any chronic illness. Additionally, ICDs impose unique emotional pressures relating to altered body image, painful shocks, and the possibility of hardware failure. The random nature of shocks commonly induces feelings of isolation and powerlessness and the experience of shocks is directly linked to poor QOL outcomes. Lifestyle changes, such as restrictions on driving, eligibility for employment, marital and social relationships, sexual intimacy, or participation in recreational activities can significantly affect the ICD patient's psychological and emotional well-being. The purpose of this article is to review the QOL data from several large-scale clinical trials of ICD patients as well as to examine specific QOL issues such as driving restrictions, occupational, and recreational concerns.

Obsessive-compulsive disorder: unearthing a hidden problem.

Obsessive-compulsive disorder (OCD) is the fourth most common psychiatric disorder. Yet patients often avoid seeking help because they are ashamed. Diagnosis is difficult, but familiarity with the nature of OCD and its current management helps primary care physicians identify patients with OCD and make informed judgments about treatment and referral. We review common symptoms, causes, drug therapy, behavioral therapy, and quality of life issues in patients with OCD.

Sexual Function: Quality of Life Issues in Patients with Locally Advanced Non-Metastatic Prostate Cancer

Sexual activity is an important aspect of quality of life for most middle-aged and many older men. However, men diagnosed and treated for prostate cancer frequently experience loss of libido and/or erectile dysfunction. Impotence is almost inevitable after non-nerve-sparing radical prostatectomy, but also occurs in 30–75% of patients in whom preservation of the neurovascular bundles is attempted. Erectile dysfunction may also be experienced by up to 50–60% of patients treated by conventional radiotherapy or brachytherapy. In men with more advanced disease, castration (surgical or medical) is associated with a loss of libido, as well as erectile dysfunction. For patients interested in sexual activity, erectile dysfunction can usually be treated. Sildenafil is generally first-line therapy and is effective in 70–80% of post-radiotherapy patients, while in post-radical prostatectomy patients, efficacy is dependent on the presence of the neurovascular bundles. As there are no effective therapies for loss of libido, hormone therapies that help to maintain sexual interest are needed. In large, randomised studies in men with previously untreated locally advanced, non-metastatic (M0) disease, bicalutamide (‘Casodex’) 150 mg monotherapy conferred significant benefits over castration with respect to the maintenance of sexual interest ( p=0.029), while there were no significant differences in survival outcome. Sexual frequency and function were also assessed in one of the three studies comprising the Early Prostate Cancer Programme. The majority of patients randomised to bicalutamide 150 mg retained some sexual activity and function in the first 48 weeks of the study, and approximately one-third maintained their previous levels of sexual activity and function.

Quality of life issues in patients with essential thrombocythemia and polycythemia vera.

Essential thrombocythemia and polycythemia vera are both chronic progressive myeloproliferative disorders of insidious onset. If the excessive production of red cells and/or platelets is controlled, patients with these disorders may have prolonged survival. However, the clinical course of these patients can be complicated by a variety of events, including thrombotic episodes, bleeding episodes, arthropathies, pruritus, weakness, weight loss, neurologic impairment, erythromelalgia, fever, abdominal pain, and the life-threatening consequences of progression to myelofibrosis and/or acute leukemia. Effective control of hematopoiesis by phlebotomy or a variety of therapeutic agents has resulted in a reduction or elimination of many of these clinical events, but has not altered the evolution to myelofibrosis or acute leukemia. Use of each of these therapeutic strategies is also associated with a range of adverse events. Monitoring overall survival or a reduction in the frequency of clinical events has previously served as a means of assessing the results of these therapeutic interventions. Quality-of-life instruments have not been applied in a systematic fashion to the evaluation of outcomes in patients with these chronic myeloproliferative disorders. Quality-of-life assessments evaluate not only the state of well-being of a patient that results from an assessment of the individual's ability to perform everyday activities, which are reflective of physical, psychological, and social well-being, but also patient satisfaction with the control of disease and/or treatment-related symptoms. Quality-of-life instruments have been used to assess the clinical course of patients suffering from a variety of disorders, ranging from cancer to renal failure to chronic fatigue syndrome. Information about quality-of-life outcomes can contribute to the evaluation of variations in dose and timing of administration of therapeutic agents. It is possible that the side effects of a particular therapy may outweigh the disease regression achieved with a particular therapy. In the future, quality-of-life instruments may prove useful in prospectively evaluating therapeutic end points in patients with essential thrombocythemia and polycythemia vera.

Quality of life issues in patients with osteoporotic fractures

According to the World Health Organization Quality of Life group (1), quality of life may be defined as individuals’ perceptions of their position in life in the context of culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. Quality of life therefore represents a prominent aspect of the existence of each patient, being more and more important with advancing age. At the end of our existence, global quality of life constitutes one of the factors by which we also judge the value of medical care; it is one of the most important referents to which drugs should compare (2). Osteoporosis is a disease of aging whose social and economic burden will become increasingly heavier in the near future. The 20 th century has in fact witnessed the addition of 30 years to our life expectancy; furthermore, the global population of people aged over 75 is projected to increase by almost 140% from 1990 to 2020 (3). As far as quality of life in patients with osteoporosis is concerned, a number of studies have been carried out in order to evaluate its changes following the principal complications of the disease, i.e., Colles’ fracture, vertebral and hip fractures. Colles’ fracture causes a worsening of the main qualitative indices which, in the majority of cases, rapidly and significantly reverse toward the normal following treatment. A recent investigation carried out in 50 patients with this type of complication demonstrated that when taking quality-adjusted life-years as a referent parameter, the loss associated with Colles’ fracture is only about 2% (4). The first question we should answer when taking into consideration osteoporotic patients is whether differences exist between those with and without fractures. The basal evaluation of 751 patients enrolled in the MORE (Multiple Outcome of Raloxifene Evaluation) study may provide an answer. Patients were assessed by means of a questionnaire, i.e., QUALEFFO (5, 6), specifically targeted by the European Foundation of Osteoporosis for osteoporotic patients. Those with vertebral fractures had higher QUALEFFO scores (that is, worse health-related quality of life) than patients without vertebral fractures. The differences between patients without fracture and patients with at least one fracture were significant for all domains and total scores except mental function. However, patients with fracture only in the lumbar region had a significantly worse health-related quality of life than patients without fractures in all domains including mental function, thereby emphasizing the importance of fracture location. Furthermore, this study showed an increasing trend in health-related quality of life scores associated with number of prevalent vertebral fractures for all but the mental function domains, indicating a progressive worsening of quality of life with increasing number of fractures. The analysis also demonstrated that with just one vertebral fracture, health-related quality of life significantly decreased with regard to pain, general health, and total scores. More importantly, the association between the number of vertebral fractures and health-related quality of life was observed consistently within each age subgroup (7). This investigation (7) also demonstrated that QUALEFFO discriminated better between patients with and without vertebral fractures than two other generic instruments previously used to address these issues, that is the Nottingham Health Profile (8) and the EQ-5D, formerly called EuroQol (9). In addition, the

Clinical Predictors of Depression in Patients with Low-Grade Brain Tumors: Consideration of a Neurologic Versus a Psychogenic Model

Few studies have examined quality of life issues in patients with brain tumors, though coping with cancer is stressful and is associated with heightened levels of depression. We used regression to examine the clinical factors that might predict depression in a group of 57 adults with low-grade brain tumors after surgery but prior to radiotherapy and chemotherapy. A neurological model comprised of tumor characteristics and treatment was compared with a psychogenic model comprised of both psychosocial and psychodynamic variables. Demographic variables and level of fatigue were also included. A model consisting primarily of fatigue (also clinically elevated) and secondarily of tumor location and aggressiveness of surgical treatment accounted for 33% of the depression score. In a small group at a later follow-up when patient depression was clinically elevated (4–6 years after baseline), fatigue, female sex, cognitive dysfunction, increased family support, and increased report of physical symptoms were associated with depression. The late out findings remain exploratory because of the small sample size, but they suggest that depression develops over time and results from a combination of neurological and psychosocial problems that ensue initial treatments. Treating these collateral problems may reduce the complications from depression.

Quality of life issues in patients with essential thrombocythemia and polycythemia vera

Essential thrombocythemia and polycythemia vera are both chronic progressive myeloproliferative disorders of insidious onset. If the excessive production of red cells and/or platelets is controlled, patients with these disorders may have prolonged survival. However, the clinical course of these patients can be complicated by a variety of events, including thrombotic episodes, bleeding episodes, arthropathies, pruritis, weakness, weight loss, neurologic impairment, erythromelalgia, fever, abdominal pain, and the life-threatening consequences of progression to myelofibrosis and/or acute leukemia. Effective control of hematopoiesis by phlebotomy or a variety of therapeutic agents has resulted in a reduction or elimination of many of these clinical events, but has not altered the evolution to myelofibrosis or acute leukemia. Use of each of these therapeutic strategies is also associated with a range of adverse events. Monitoring overall survival or a reduction in the frequency of clinical events has previously served as a means of assessing the results of these therapeutic interventions. Quality-of-life instruments have not been applied in a systematic fashion to the evaluation of outcomes in patients with these chronic myeloproliferative disorders. Quality-of-life assessments evaluate not only the state of well-being of a patient that results from an assessment of the individual's ability to perform everyday activities, which are reflective of physical, psychological, and social well-being, but also patient satisfaction with the control of disease and/or treatment-related symptoms. Quality-of-life instruments have been used to assess the clinical course of patients suffering from a variety of disorders, ranging from cancer to renal failure to chronic fatigue syndrome. Information about quality-of-life outcomes can contribute to the evaluation of variations in dose and timing of administration of therapeutic agents. It is possible that the side effects of a particular therapy may outweigh the disease regression achieved with a particular therapy. In the future, quality-of-life instruments may prove useful in prospectively evaluating therapeutic end points in patients with essential thrombocythemia and polycythemia vera. Semin Oncol 29 (suppl 10):3-9. Copyright 2002, Elsevier Science (USA). All rights reserved.

Recent developments in community leg ulcer management

Leg ulceration is a common chronic condition which can have a significant impact on the patient’s quality of life. This article discusses recent developments and nurse-led initiatives in the assessment, treatment and aftercare for patients with leg ulceration. The importance of establishing community-based leg ulcer services and adopting a multidisciplinary team approach to leg ulcer management is examined. The article also discusses the role of the tissue viability specialist in relation to effective care provision, education and quality of life issues in patients with leg ulceration.

Quality of life issues in patients with diabetes and lower extremity ulcers: patients and care givers.

The impact of lower extremity ulcers on the quality of life (QoL) of patients with diabetes and their care givers was assessed in a series of focus groups. Fourteen patients with diabetes and lower extremity ulcers and 11 care givers participated in the focus groups. Semi-structured discussions identified the issues relating to four broad QoL domains and subdomains: social (daily, leisure, family and social life), psychological (emotional health and positive consequences), physical (physical health and treatment impact) and economic (employment and finances). The patients and care givers experienced a negative impact on all domains of QoL because of the limitations in mobility caused by the ulcer which required an adaptation to a different lifestyle. A reduction in social activities, increased family tensions, lost time from work and a negative impact on general health were experienced by both groups. It is necessary to separate the impact of the ulcer from the general condition of diabetes on both patients' and care givers' QoL. The results from this disease-specific focus will allow for an improved clinical understanding with targeted interventions and contribute to the development of a disease-specific instrument to understand and measure QoL better in these individuals.

End of Life Issues in Patients with AIDS: Clinical and Research Considerations

SUMMARYThis paper examines some clinical and research considerations that are important in understanding end of life issues in patients with AIDS. Pain and other medical symptoms, neuropsychiatric complications and psychosocial factors are discussed that impact upon the views such patients may have of palliative care, physician-assisted suicide, euthanasia and the desire to hasten death. The importance of increasing physicians' ability to diagnose and treat depression, anxiety, organic mental syndromes, pain and other distressing symptoms is stressed. The possible impact that such treatment may have on obviating the desire to hasten death that stems from unrecognized suffering is discussed. The great social diversity of the AIDS population, and the challenge it poses to palliative care specialists, and a number of social factors that affect end of life issues in our clinical experience and research are described.

Quality of life issues in patients with disseminated breast cancer

Over half the women treated for breast cancer will experience advanced disease, and issues related to quality of life are particularly important. This article has reviewed components of quality of life specific to women with advanced breast cancer following two clinical courses:those who develop a recurrence and those who present with advanced disease. It is clear that additional research is warranted on the quality of life in women with advanced breast cancer. Work to date has clearly indicated that the management of women with advanced disease requires the resources available from a multidisciplinary perspective. Efforts to manage advanced breast cancer must include both current medical therapies and attention to the critical factors associated with enhancing the quality of their lives. Of final concern is the relationship of social class to advanced disease. Following Freeman's recent outline of the agenda for the American Cancer Society, more attention must be given to people who are economically disadvantaged because cancer incidence and mortality are greater among poor people than among the affluent. It is possible that over 50% of women presenting with advanced cancer of the breast are economically disadvantaged. Validation of this problem through research should lead to prevention programs targeted to this population. Women with breast cancer who are economically disadvantaged may be particularly receptive to interventions that will enhance their quality of life.