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Biomedical subjects

Neil K Aaronson

Publications and source records attributed to Neil K Aaronson.

At least 19 recordsLinked to original sources
PubMed2006

Breast cancer patients on adjuvant chemotherapy report a wide range of problems not identified by health-care staff.

BACKGROUND: Adjuvant chemotherapy for primary breast cancer is associated with significant side effects. The aims of this study were (1) to compare health-related quality of life (HRQL) in patients undergoing adjuvant chemotherapy to patients not on chemotherapy and (2) to compare these results against a survey investigating health-care professionals' knowledge of HRQL. METHODS: Patients on adjuvant cyclophosphamide, methotrexate, fluoracil chemotherapy were compared to 'low-risk' patients not on chemotherapy ('control group'). A questionnaire including the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale (HADS), and the DBCG 89 Questionnaire was administered six times during a 2-year period. Forty-six experienced health-care professionals were asked which quality-of-life issues they thought were affected by adjuvant chemotherapy. RESULTS: After 2 years, 159 of 242 patients on chemotherapy and 148 of 199 patients in the control group were alive and recurrence-free and had completed all questionnaires. Worse HRQL during chemotherapy was seen, as had been previously suggested, for 23 of 30 variables. A number of the health-care professionals had not indicated patients to have these side effects. Several side effects persisted after the chemotherapy. CONCLUSIONS: This study provides the most comprehensive description of HRQL in adjuvant therapy to date. The discrepancy between patients and doctors/nurses suggests that patients have been insufficiently informed about the impact of chemotherapy on quality of life. The results of this study provide a basis for information that can be given to patients, and indicate that the care offered to patients in chemotherapy should seek to prevent, identify, and alleviate a very broad range of problems.

Adult↗
PubMed2006

The course of neurocognitive functioning in high-grade glioma patients.

We evaluated the course of neurocognitive functioning in newly diagnosed high-grade glioma patients and specifically the effect of tumor recurrence. Following baseline assessment (after surgery and before radiotherapy), neurocognitive functioning was evaluated at 8 and 16 months. Neurocognitive summary measures were calculated to detect possible deficits in the domains of (1) information processing, (2) psychomotor function, (3) attention, (4) verbal memory, (5) working memory, and (6) executive functioning. Repeated-measures analyses of covariance were used to evaluate changes over time. Thirty-six patients were tested at baseline only. Follow-up data were obtained for 32 patients: 14 had a follow-up at 8 months, and 18 had an additional follow-up at 16 months. Between baseline and eight months, patients deteriorated in information-processing capacity, psychomotor speed, and attentional functioning. Further deterioration was observed between 8 and 16 months. Of 32 patients, 15 suffered from tumor recurrence before the eight-month follow-up. Compared with recurrence-free patients, not only did patients with recurrence have lower information-processing capacity, psychomotor speed, and executive functioning, but they also exhibited a more pronounced deterioration between baseline and eight-month follow-up. This difference could be attributed to the use of antiepileptic drugs in the patient group with recurrence. This study showed a marked decline in neurocognitive functioning in HGG patients in the course of their disease. Patients with tumor progression performed worse on neurocognitive tests than did patients without progression, which could be attributed to the use of antiepileptic drugs. The possibility of deleterious effects is important to consider when prescribing antiepileptic drug treatment.

Adult↗
PubMed2006

Translation and validation of the SF-36 Health Survey for use among Turkish and Moroccan ethnic minority cancer patients in The Netherlands.

In this study, the SF-36 Health Survey was translated into two oral Moroccan languages and the existing Turkish version was culturally adapted for use in The Netherlands, and was tested among 79 Moroccan and 90 Turkish cancer patients. There were normal levels of missing item responses but a higher administration time. With minor exceptions, the scale structure of the SF-36 was confirmed and the reliability of the scales met the 0.70 criterion for group comparisons. The questionnaire distinguished clearly between subgroups formed on the basis of performance status and was responsive to change in performance status over time. Some evidence of differential item function (DIF) was found in both ethnic groups. These results support the use of the SF-36 among Turkish and Moroccan cancer patients in The Netherlands. Additional studies are needed to confirm the psychometrics of the questionnaire when used among these ethnic minority groups in other Western European countries.

Adult↗
PubMed2006

Responsiveness and minimal important differences for patient reported outcomes.

Patient reported outcomes provide the patient's perspective on the effectiveness of treatment. The draft Food and Drug Administration guidance on patient reported outcomes for labeling and promotional claims raises a number of method and measurement issues that require further clarification, including methods of determining responsiveness and minimal important differences. For clinical trials, instruments need to be based on a clear conceptual framework, have evidence supporting content validity and acceptable psychometric qualities. The measures must also have evidence documenting responsiveness and interpretation guidelines (i.e., minimal important difference) to be most useful as effectiveness endpoints in clinical trials. The recommended approach is to estimate the minimal important difference based on several anchor-based methods, with relevant clinical or patient-based indicators, and to examine various distribution-based estimates (i.e., effect size, standardized response mean, standard error of measurement) as supportive information, and then to triangulate on a single value or small range of values for the MID. Confidence in a specific MID value evolves over time and is confirmed by additional research evidence, including clinical trial experience. The MID may vary by population and context, and no one MID will be valid for all study applications involving a PRO instrument. Responsiveness and MID must be demonstrated and documented for the particular study population, and these measurement characteristics are needed for PRO labeling and promotional claims.

Clinical Trials as Topic↗
PubMed2006

Better quality of life among 10-15 year survivors of Hodgkin's lymphoma compared to 5-9 year survivors: a population-based study.

This study describes the quality of life (QoL) of long-term Hodgkin's lymphoma survivors and compares it to an age-matched normative sample. The population-based Eindhoven Cancer Registry was used to select all patients diagnosed with Hodgkin's lymphoma from 1989 to 1998. Eighty percent of survivors completed the SF-36 and the quality of life-cancer survivors questionnaire. QoL was better among patients diagnosed 10-15 years ago compared to patients diagnosed 5-9 years ago. The patients diagnosed 5-9 years ago experienced lower general health, social functioning, mental health and vitality compared to an age-matched normative sample, while the patients diagnosed 10-15 years earlier reported lower general health but better physical functioning. Most patients reported that their work situation did not change. Problems pertaining to the obtainment of health insurance, life insurance and mortgages were high. QoL among Hodgkin's lymphoma survivors is lower compared to an age-matched normative sample. Survivors furthermore experience some (financial) problems in the years after diagnosis.

Adult↗
PubMed2006

Radiotherapy alone, versus radiotherapy with amifostine 3 times weekly, versus radiotherapy with amifostine 5 times weekly: A prospective randomized study in squamous cell head and neck cancer.

BACKGROUND: The main objective of this study was to investigate whether nondaily intravenous administration of amifostine was as effective as daily intravenous administration with regard to the reduction of the incidence of Grade 2 or greater xerostomia in patients with head and neck cancer. METHODS: Ninety-one patients who received bilateral irradiation for head and neck cancer were included. Thirty patients received no amifostine (AMI-0), 31 patients received amifostine at a dose of 200 mg/m2 3 times weekly (AMI-3), and 30 patients received amifostine at a dose of 200 mg/m2 daily (5 times weekly) (AMI-5). Acute and late xerostomia and quality of life (QOL) were assessed at baseline, 6 weeks later, and at 6-month intervals from 6 months to 24 months postradiotherapy. RESULTS: Grade 2 or greater late xerostomia differed significantly at 6 months (AMI-0 74% vs. AMI-3 67% vs. AMI-5 52%; P = .03), but not thereafter. During follow-up, patient-rated xerostomia deteriorated more in AMI-0 patients (mean difference score:, 52 for AMI-0 compared with 25 for AMI-3, and 29 for AMI-5; P = .01). Nausea and emesis were reported most frequently as side effect, but Grade 2 or greater toxicity was observed in only 4 patients. However, 28% of patients discontinued amifostine before the end of radiotherapy. CONCLUSIONS: Long-term, patient-rated xerostomia was less for the AMI-3 and AMI-5 groups through 2-year follow-up, but no difference was noted between the AMI-3 and AMI-5 groups. For late xerostomia according to the Radiation Therapy Oncology Group criteria, the same effect was observed at 6 months, but not thereafter.

Adult↗
PubMed2006

The impact of hormone replacement therapy on menopausal symptoms in younger high-risk women after prophylactic salpingo-oophorectomy.

PURPOSE: Preventive health strategies for women at increased hereditary risk of ovarian cancer include gynecologic screening (GS) and/or prophylactic oophorectomy (PBSO). Hormone replacement therapy (HRT) is often prescribed to compensate for postsurgical endocrine deficiencies. This study examined the impact of HRT use on levels of endocrine symptoms and sexual functioning among premenopausal women who have undergone PBSO. Comparisons were made with similar women undergoing GS. PATIENTS AND METHODS: Questionnaire data on endocrine symptoms and sexual functioning were obtained from 450 premenopausal, high-risk women who had participated in this nationwide, cross-sectional, observational study. RESULTS: Thirty-six percent of women had undergone PBSO and 64% had opted for GS. In the PBSO group, 47% of the women were current HRT users. They reported significantly fewer vasomotor symptoms than nonusers (P < .05). However, compared with premenopausal women undergoing GS, oophorectomized HRT users were more likely to report vasomotor symptoms (P < .01). HRT users and nonusers reported comparable levels of sexual functioning. Compared with women in the GS group, oophorectomized HRT users reported significantly more sexual discomfort due to vaginal dryness and dyspareunia (P < .01). CONCLUSION: Although HRT has a positive impact on surgically induced vasomotor symptoms, it may be less effective than is often assumed. Symptom levels remain well above those of premenopausal women undergoing screening, and sexual discomfort is not alleviated by HRT. Physicians need to provide younger high-risk women considering PBSO with realistic information about both benefits and drawbacks of this preventive strategy, including information about premature menopause and HRT.

Adult↗
PubMed2006

Level of agreement between patient self-report and observer ratings of health-related quality of life communication in oncology.

OBJECTIVE: To determine the level of agreement between patients and observers regarding the frequency with which health-related quality of life topics are discussed during outpatient clinical oncology visits. METHODS: The sample (n=50) consisted of a consecutive series of cancer patients undergoing chemotherapy. Both the patients and observers used a checklist to report which HRQL topics had been discussed during the consultation. Percentage of agreement, kappa and adjust-kappa statistics were calculated. RESULTS: The percentage agreement between patients' and observers' ratings was generally high, ranging from 74% for fatigue to 96% for sleep problems and cognitive functioning. The average percentage of agreement over the 13 HRQL topics rated was 86%. Cohen's kappa varied between 0.41 (for pain) and 0.78 (for sleep problems). Prevalence-adjusted kappa's were generally higher, ranging from 0.48 (for fatigue) to 0.92 (for sleep problems and social functioning). The average Cohen's kappa and prevalence-adjusted kappa over the 13 HRQL topics were 0.56 and 0.71, respectively. Level of agreement was not found to vary significantly as a function of patients' background characteristics. CONCLUSION: Oncology patients' self-reports of the HRQL-related topics discussed during outpatient chemotherapy visits are in reasonably close agreement with those provided by observers. PRACTICE IMPLICATIONS: Our results indicate that the patient is a legitimate source of information about the HRQL-related content of medical encounters, and thus can be used in communication studies where the collection of observational data (e.g., via audio- or videotaping) is either too costly or logistically impractical.

Adult↗
PubMed2006

Methodological quality of patient-reported outcome research was low in complementary and alternative medicine in oncology.

OBJECTIVE: To evaluate the methodological robustness of patient-reported outcomes (PROs) evaluation in complementary and alternative medicine (CAM) randomized controlled trials (RCTs) in oncology. STUDY DESIGN AND SETTING: CAM RCTs with a PRO endpoint were retrieved from a number of electronic databases. CAM interventions were defined according to the five major categories of the National Center for Complementary and Alternative Medicine. The "Minimum Standard Checklist for Evaluating HRQOL Outcomes in Cancer Clinical Trials" was used to assess the quality of the PRO reporting in these trials. RESULTS: Forty-four RCTs enrolling 4,912 patients were identified: six studies involved alternative medical systems, 14 involved mind body interventions, 15 dealt with biologically-based therapies, seven involved manipulative and body-based methods, and two energy therapies. Eighty-nine percent of studies used a PRO as a primary endpoint and 59% documented PRO missing data. Although 84% of the studies used a validated PRO questionnaire, only 37% stated an a priori hypothesis and 20% addressed clinical significance of the outcomes. Overall, 64% of the studies analyzed exhibited a number of methodological drawbacks. CONCLUSIONS: To facilitate the interpretation of results from such CAM RCTs, investigators are encouraged to pay greater attention to key methodological issues as identified in this study.

Complementary Therapies↗
PubMed2005

The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care.

This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to determine the appropriateness, relevance and importance of the various domains of the QLQ-C30. Item response theory methods were used to shorten scales. Patients and health care professionals rated pain, physical function, emotional function, fatigue, global health status/quality of life, nausea/vomiting, appetite, dyspnoea, constipation, and sleep as most important. Therefore, these scales/items were retained in the questionnaire. Four scales were shortened without reducing measurement precision. Important dimensions not covered by the questionnaire were identified. The resulting 15-item EORTC QLQ-C15-PAL is a 'core questionnaire' for palliative care. Depending on the research questions, it may be supplemented by additional items, modules or questionnaires.

Activities of Daily Living↗
PubMed2005

Quality-of-life effects of prophylactic salpingo-oophorectomy versus gynecologic screening among women at increased risk of hereditary ovarian cancer.

PURPOSE: Recommendations for women at high risk of ovarian cancer include periodic gynecologic screening (GS) and prophylactic bilateral salpingo-oophorectomy (PBSO). The aim of the current study was to determine the quality-of-life (QOL) effects of PBSO versus GS. PATIENTS AND METHODS: Questionnaire data were obtained from 846 high-risk women who had participated in this nationwide, cross-sectional, observational study. Forty-four percent of the women had undergone PBSO, and 56% had opted for GS. Topics addressed by the questionnaire included generic QOL, cancer-specific distress, endocrine symptoms, and sexual functioning. RESULTS: No statistically significant between-group differences were observed in generic QOL (Short Form-36), with women in both the PBSO and GS groups scoring similarly to the general population. Compared with GS, PBSO was associated with fewer breast and ovarian cancer worries (P < .001) and more favorable cancer risk perception (P < .05). However, the PBSO group reported significantly more endocrine symptoms (P < .001) and worse sexual functioning (P < .05) than the GS group. Eighty-six percent of women would choose PBSO again, and 63% would recommend it to a friend with familial risk of ovarian cancer. CONCLUSION: PBSO had no measurable adverse impact on generic QOL of high-risk women. The favorable effects of PBSO in terms of reduced cancer worries and low perceived cancer risk need to be weighed against the increase in endocrine and sexual symptoms. Balanced information will help clinicians and high-risk women to make informed decisions about the optimal preventive health strategy.

Adult↗
PubMed2005

Physical exercise in cancer patients during and after medical treatment: a systematic review of randomized and controlled clinical trials.

PURPOSE: To systematically review the methodologic quality of, and summarize the evidence from trials examining the effectiveness of physical exercise in improving the level of physical functioning and psychological well-being of cancer patients during and after medical treatment. METHODS: Thirty-four randomized clinical trials (RCTs) and controlled clinical trials were identified, reviewed for substantive results, and assessed for methodologic quality. RESULTS: Four of 34 trials met all (seven of seven) methodologic criteria on the Delphi criteria list. Failure to conceal the sequencing of treatment allocation before patient recruitment, failure to blind the outcome assessor, and failure to employ an intention-to-treat analysis strategy were the most prevalent methodologic shortcomings. Various exercise modalities have been applied, differing in content, frequency, intensity, and duration. Positive results have been observed for a diverse set of outcomes, including physiologic measures, objective performance indicators, self-reported functioning and symptoms, psychological well-being, and overall health-related quality of life. CONCLUSION: The trials reviewed were of moderate methodologic quality. Together they suggest that cancer patients may benefit from physical exercise both during and after treatment. However, the specific beneficial effects of physical exercise may vary as a function of the stage of disease, the nature of the medical treatment, and the current lifestyle of the patient. Future RCTs should use larger samples, use appropriate comparison groups to rule out the possibility of an attention-placebo effect, use a comparable set of outcome measures, pay greater attention to issues of motivation and adherence of patients participating in exercise programs, and examine the effect of exercise on cancer survival.

Exercise↗
PubMed2005

Screening behavior of individuals at high risk for colorectal cancer.

BACKGROUND AND AIMS: Periodic colonoscopy is an effective means of reducing the incidence and mortality of colorectal cancer in individuals with a family history of the disease. The aims of this study were to determine the degree of compliance and to identify the factors related significantly to noncompliance with periodic screening in this high-risk population. METHODS: A total of 178 individuals who had undergone genetic counseling for colorectal cancer between 1986 and 1998 and who had been advised to undergo periodic screening because of familial colorectal cancer (FCRC) or hereditary nonpolyposis colorectal cancer (HNPCC) were invited to complete a self-report questionnaire on psychosocial issues and screening experiences. Compliance data were derived from medical records and via self-report. RESULTS: A total of 149 individuals (84%) participated in the study. Noncompliance with screening advice was rare (in 3% of cases), but significant delays (more than 1 year) in undergoing screening were observed in approximately 25% of the cases. The number of perceived barriers to screening (eg, discomfort, embarrassment) was the only variable related significantly to noncompliance/screening delay (odds ratio, 1.2; 95% confidence interval, 1.1-1.3). Use of sedatives during the procedure and receipt of a reminder letter seemed to facilitate better compliance. CONCLUSIONS: Although few high-risk individuals abstain from screening entirely, approximately one in 4 deviates significantly from the recommended frequency of screening. Increased compliance may be achieved by reducing the discomfort and embarrassment associated with the procedure and by the use of reminder letters.

Adult↗
PubMed2004

Immune function and adjustment style: do they predict survival in breast cancer?

The aim of this study was to investigate the role of immune status and psychosocial factors in survival from early breast cancer (N=61). Baseline assessments included lymphocyte number and function, natural killer cell activity (NKA), plasma cortisol and prolactin level. Psychosocial measures included anxiety, depression and mental adjustment to cancer and social support. Length of follow-up was 6.1-7.9 years with 14 (23%) breast cancer deaths. In Cox proportional hazards models adjusting for lymph node status two parameters predicted longer survival, low NKA (HR 29 per LLU, p=0.003) and minimizing the illness adjustment (HR 0.64 per scale point, p=0.012). These data provide little evidence for a psychoneuroimmunological mechanism in the survival from breast cancer. While this study is limited due to small sample size, and therefore the possibility of inflated estimates, longer survival in those minimizing the illness is a finding consistent with recent studies; however, the counter-intuitive finding that high NKA predicts shorter survival may be a marker for current disease or response to treatments.

Adaptation, Psychological↗
PubMed2004

Health-related quality of life associated with chronic conditions in eight countries: results from the International Quality of Life Assessment (IQOLA) Project.

CONTEXT: Few studies and no international comparisons have examined the impact of multiple chronic conditions on populations using a comprehensive health-related quality of life (HRQL) questionnaire. OBJECTIVE: The impact of common chronic conditions on HRQL among the general populations of eight countries was assessed. DESIGN: Cross-sectional mail and interview surveys were conducted. PARTICIPANTS AND SETTING: Sample representatives of the adult general population of eight countries (Denmark, France, Germany, Italy, Japan, The Netherlands, Norway and the United States) were evaluated. Sample sizes ranged from 2031 to 4084. MAIN OUTCOME MEASURES: Self-reported prevalence of chronic conditions (including allergies, arthritis, congestive heart failure, chronic lung disease, hypertension, diabetes, and ischemic heart disease), sociodemographic data and the SF-36 Health Survey were obtained. The SF-36 scale and summary scores were estimated for individuals with and without selected chronic conditions and compared across countries using multivariate linear regression analyses. Adjustments were made for age, gender, marital status, education and the mode of SF-36 administration. RESULTS: More than half (55.1%) of the pooled sample reported at least one chronic condition, and 30.2% had more than one. Hypertension, allergies and arthritis were the most frequently reported conditions. The effect of ischemic heart disease on many of the physical health scales was noteworthy, as was the impact of diabetes on general health, or arthritis on bodily pain scale scores. Arthritis, chronic lung disease and congestive heart failure were the conditions with a higher impact on SF-36 physical summary score, whereas for hypertension and allergies, HRQL impact was low (comparing with a typical person without chronic conditions, deviation scores were around -4 points for the first group and -1 for the second). Differences between chronic conditions in terms of their impact on SF-36 mental summary score were low (deviation scores ranged between -1 and -2). CONCLUSIONS: Arthritis has the highest HRQL impact in the general population of the countries studied due to the combination of a high deviation score on physical scales and a high frequency. Impact of chronic conditions on HRQL was similar roughly across countries, despite important variation in prevalence. The use of HRQL measures such as the SF-36 should be useful to better characterize the global burden of disease.

Adult↗
PubMed2003

Quality of life in good prognosis patients with metastatic germ cell cancer: a prospective study of the European Organization for Research and Treatment of Cancer Genitourinary Group/Medical Research Council Testicular Cancer Study Group (30941/TE20).

PURPOSE: To describe global quality of life (GLQL) in patients with metastatic testicular cancer (TC) treated with four different schedules of bleomycin, etoposide, and cisplatin (BEP) chemotherapy (four v three cycles given over 5 v 3 days). PATIENTS AND METHODS: Quality-of-life data were prospectively collected in 666 patients with metastatic TC entered into the European Organization for Research and Treatment of Cancer (EORTC) Trial 30941/United Kingdom Medical Research Council Trial TE20, using the EORTC Quality-of-Life Questionnaire C30 and a TC module. Data were analyzed by a mixed effects model and by evaluation of clinically relevant changes at 2 years. RESULTS: The pattern of GLQL changes was similar in the four groups. Two years after chemotherapy, 36% of patients displayed improved GLQL as compared with baseline, whereas GLQL had deteriorated in 13%. At 3 months, patients receiving the 3-day regimen experienced increased gastrointestinal (GI) toxicity more than those receiving the 5-day regimen, with the difference reaching the level of clinical relevance (>or = 10-point change) if four cycles were given. The 3-day schedule increased the 2-year risk of tinnitus, with clinical relevance demonstrated after four cycles. Long-term peripheral neuropathy and Raynaud-like phenomena were not associated with the number of cycles or days per cycle. At 2 years, Raynaud-like phenomena, tinnitus, or reduced hearing were reported by 21% to 26% of the patients. CONCLUSION: Because of the excess of acute GI toxicity and the increased risk of tinnitus after the 3-day regimen, we recommend the 5-day regimen if four cycles of BEP are planned. If only three cycles are to be given, then the 3-day regimen is acceptable, even given the increased risk of nausea/vomiting at 3 months.

Activities of Daily Living↗
PubMed2003

Epilepsy in low-grade gliomas: the impact on cognitive function and quality of life.

Low-grade gliomas frequently are associated with epilepsy. The purpose of this study is to determine the impact of epilepsy and antiepileptic drug (AED) treatment on cognitive functioning and health-related quality of life (HRQOL) in these patients. One hundred fifty-six patients without clinical or radiological signs of tumor recurrence for at least 1 year after histological diagnosis and with an epilepsy burden (based on seizure frequency and AED use) ranging from none to severe were compared with healthy controls. The association between epilepsy burden and cognition/HRQOL was also investigated. Eighty-six percent of the patients had epilepsy and 50% of those using AEDs actually were seizure-free. Compared with healthy controls, glioma patients had significant reductions in information processing speed, psychomotor function, attentional functioning, verbal and working memory, executive functioning, and HRQOL. The increase in epilepsy burden that was associated with significant reductions in all cognitive domains except for attentional and memory functioning could primarily be attributed to the use of AEDs, whereas the decline in HRQOL could be ascribed to the lack of complete seizure control. In conclusion, low-grade glioma patients suffer from a number of neuropsychological and psychological problems that are aggravated by the severity of epilepsy and by the intensity of the treatment.

Adult↗