Clinical,Emotional and Social Factors Associated with Quality of Life in Chronic Pancreatitis

Background: In chronic pancreatitis (CP), a debilitating, progressive and incurable disease, patients' wellbeing is considerably impaired, butthedifferentfactorsaffecting quality of life (QoL), have not been identified yet. Methods: 69 patients with CP were evaluated (M/F 55/14; mean age 46.6 ± 10.05 years). Different degrees of pancreatic damage were defined using the Cambridge classification; pain intensity and frequency were assessed using pain index. QoL was measured using EORTC QLQ-C30 and the PAN26 questionnaire. Although developed for pancreatic cancer, the C30/PAN26 has been validated for chronic pancreatitis. Results: Digestive symptoms, financial difficulties, fear of future health and general pain scales showed considerable effects of CP on QoL. We observed significant negative correlation between mean QoL scores and pain index in almost all domains (p< 0.001, p<0.05). Pain intensity affects QoL scales more often than pain frequency. BMI correlated positively with QoL in global health status, altered bowel habits, body image and satisfaction with health care domains (p<0.01, p<0.05). Conclusion: Pain index, BMI, Cambridge classification and disease duration are the most important factors adversely affecting QoL in CP. Measurement of QoL is essential in the disease management and improves the knowledge of psychosocial functioning of these patients.     

EORTC QLQ-C30 and FACT-BMT for the measurement of quality of life in bone marrow transplant recipients: a comparison

The purpose of the study was to compare two different quality-of-life self-rating instruments, namely the EORTC QLQ-C30, developed by the quality-of-life study group of the European Organisation for Research and Treatment of Cancer, and the FACT-BMT (version 3), the Functional Assessment of Cancer Therapy - Bone Marrow Transplantation scale, which is the FACT-G(eneral measure) in combination with a module developed specifically for evaluating quality of life of bone marrow transplant (BMT) patients. Fifty-six BMT recipients completed both the EORTC QLQ-C30 and the FACT-BMT (German language version) during the same session. Questionnaire data were analyzed on a subscale basis using correlation analysis and multiple linear regression. Correlations between corresponding subscales of EORTC QLQ-C30 and the FACT-BMT ranged from r=0.30 for the emotional domain (poor agreement) to r=0.77 for global QOL (good agreement). This suggests that the instruments, despite considerable overlap, possibly focus on different aspects of QOL, in particular in addressing emotional and social issues of BMT patients. It appears that the FACT-BMT gives a more comprehensive overview regarding the multidimensional construct of quality of life. The EORTC QLQ-C30 gives more insight into the physical aspects of quality of life and helps to identify symptoms which effectively decrease quality of life from the patient's perspective. The QLQ-C30 might be improved by the incorporation of a BMT-specific module currently under development. We therefore conclude that neither of the two instruments can be replaced by the other in the assessment of QOL of BMT patients and that a direct comparison of results obtained with the two instruments is likely to be misleading.     

Development of a disease-specific quality of life questionnaire for patients with aplastic anemia and/or paroxysmal nocturnal hemoglobinuria (QLQ-AA/PNH)—report on phases I and II

Acquired aplastic anemia (AA) and paroxysmal nocturnal hemoglobinuria (PNH) are interrelated ultra-rare diseases. Quality of life (QoL) evaluation tools used in studies for AA and PNH are unspecific and designed for cancer patients (e.g., the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, EORTC QLQ-C30). Given the complexity of AA and PNH, variation in symptoms and treatments, younger age of many patients, and the fact that AA and PNH are not classified as malignant diseases, it is likely that cancer-specific questionnaires are inappropriate. We generate an AA/PNH-specific QoL questionnaire (QLQ-AA/PNH), performed according to EORTC guidelines. QoL issues were obtained from the literature and interviews with patients and physicians (phase I), then ranked by patients and physicians. In phase II, items were created. Patients in more than 25 German and Swiss cities were interviewed face to face. In phase I, interviews of 19 patients and 8 physicians specialized in AA/PNH treatment resulted in 649 QoL issues; these were condensed to 175 and graded according to their importance by 30 patients and 14 physicians (phase II). Five physicians took part in phases I and II. Altogether, 97 issues were rated important. Twelve EORTC QLQ-C30 items were not rated important, while several new QoL aspects were brought up. Modifications in wording and phrasing led to two questionnaires with 77 items regarding general QoL aspects and 20 items regarding medical care. Important QoL aspects of PNH/AA patients are inappropriately captured with available QoL tools. Developing a new QoL questionnaire specific for this patient group is warranted.     

Quality of life assessment after pancreatic enzyme replacement therapy in chronic pancreatitis.

GOALS: To evaluate the quality of life (QoL) of patients with chronic pancreatitis before and after pancreatic enzyme replacement therapy in a prospective, multicentre, follow-up study. STUDY: Two groups of patients were evaluated. Group 1 consisted of 31 patients with newly diagnosed chronic pancreatitis who had never been treated with pancreatic enzyme preparations. Group 2 consisted of 39 patients whose disease was diagnosed on average 3.4 years before the start of the study. The latter group of patients had undergone pancreatic enzyme replacement therapy, but during follow-up this treatment proved to be insufficient. The dose of pancreatic enzyme replacement therapy was tailored in accordance with the degree of pancreatic exocrine insufficiency measured by means of exocrine pancreatic function tests. A modified European Organizaton for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) was used to assess QoL. RESULTS: The social functioning and financial strain were significantly better, while the levels of hope and confidence were significantly reduced in group 1 compared with group 2. A significant gain in body weight and a significantly reduced defecation rate were found in both groups one month after the beginning of the pancreatic enzyme replacement therapy when compared with the pretreatment values. The prevalence of general and disease-specific symptoms and the intensity of pain were reduced in both groups after one month of enzyme substitution therapy. The working ability, the financial strain and the overall QoL scores were improved significantly in both groups, while the cognitive functioning score was found to be significantly improved during the follow-up only in group 1. The overall increase in the QoL score correlated significantly with the increase in body weight and the decrease in defecation number in both groups. CONCLUSIONS: Pancreatic enzyme replacement therapy in patients with chronic pancreatitis not only reduced the extent of steatorrhea and pain, but also significantly improved a variety of other symptoms and the patient's QoL. Individually tailored enzyme replacement therapy improved the QoL not only in the untreated chronic pancreatitis patients, but also in the inadequately treated group. This study demonstrated that the EORTC QLQ-C30 questionnaire, with the addition of two further questions about steatorrhea, is a useful tool for the evaluation of QoL in patients with chronic pancreatitis.     

The European organization for research and treatment of cancer quality of life questionnaire: implications for prognosis in pancreatic cancer

Background The goal of this study was to evaluate the association between patient quality of life (QoL) and survival in pancreatic cancer patients undergoing care in a community hospital comprehensive cancer center. Patients and Methods A consecutive case series of 55 histologically confirmed pancreatic cancer treated at Cancer Treatment Centers of America? at Midwestern Regional Medical Center was studied between 04/01 and 11/04. The EORTC QLQ-C30 was utilized to assess patient QoL. Kaplan–Meier method was used to calculate survival. Log-rank test was used to study the equality of survival distributions. Multivariate Cox regression analyses were then performed to evaluate the joint prognostic significance of those QoL and clinical factors that were shown to be prognostic upon univariate analyses. Results Of the 55 patients, 28 were newly diagnosed and 27 had prior treatment history. The median age was 55 years (range 33–74 years). Majority (34) had stage IV disease at diagnosis. The QLQ-C30 parameters to show statistically significant associations with survival were physical, role, and emotional functioning scales and fatigue, appetite loss, constipation, and diarrhea symptom scales. Conclusions We found that patient QoL, as measured by the QLQ-C30 physical functioning scale, provides useful prognostic information, independent of multiple cancer symptoms, in patients with pancreatic cancer. While these findings require further investigation in large patient cohorts, they may have important implications for patient stratification in clinical trials, as well as aid in clinical decision making.     

Development of an EORTC questionnaire module to be used in health-related quality-of-life assessment for patients with multiple myeloma. European Organization for Research and Treatment of Cancer Study Group on Quality of Life

A multiple myeloma-specific quality-of-life questionnaire module has been designed in collaboration with the EORTC Quality-of-Life Study Group to be used in clinical trials with the EORTC QLQ-C30, a general cancer questionnaire. Strict methodology was employed to ensure thorough and appropriate development of the module. An extensive literature review was performed to identify health-related quality-of-life issues relevant to patients with multiple myeloma. Semi-structured interviews were then carried out in several European countries with health-care providers experienced in the treatment of patients with multiple myeloma, and with a group of patients with multiple myeloma, to identify the issues which were most important to patients. A questionnaire was devised from the list of issues, using a 1-week time-frame and response categories consistent with the EORTC QLQ-C30. The provisional questionnaire and the EORTC QLQ-C30 were administered to patients with multiple myeloma in each participating country with further semi-structured interviews to refine the content and design of the questionnaire. A review of the results obtained in each stage of development resulted in a 24-item myeloma-specific module, the EORTC QLQ-MY24, which assesses disease-specific symptoms and their impact on everyday life, treatment side-effects, social support, and future perspective. The module is currently undergoing further international field-testing to assess its psychometric properties.     

Duodenopancreatectomy versus duodenum-preserving pancreatic head excision for chronic pancreatitis.

BACKGROUND: The aim of this study was to compare two surgical procedures in the treatment for chronic pancreatitis (CP): pancreatoduodenectomy resection (classical Whipple - PD procedure, or pylorus-preserving - PPPD) to duodenum-preserving pancreatic head excision with longitudinal pancreatojejunoanastomosis (DPPHE/PJA), to define the advantages of each procedure with regard to postoperative complications, pain relief, and the quality of life. MATERIAL AND METHOD: 104 consecutive patients were included into this study. Duodenopancreatectomy was chosen when the head pancreatic mass was present or pancreatic cancer could not be ruled out (48 patients); otherwise DPPHE/PJA was performed (56 patients). Quality of life was measured prospectively on two occasions, before the procedure and during follow-up (median 39 months after surgery) using the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire (QLQ-C30). The test was re-evaluated for patients suffering from CP. Pain intensity was quantified using a specially designed pain score. Early postoperative morbidity and mortality were assessed and evaluated in both groups of patients. RESULTS: Total pain score decreased significantly after surgery in both groups of patients. During the follow-up period, the global quality of life improved by 30.4% in the DPPHE/PJA group, and by 23.2% in the PD/PPPD group. Postoperative morbidity and mortality were higher in the resection group, but the differences were not significant. CONCLUSIONS: Both surgical procedures led to significant improvement in the quality of life and pain relief after surgery for CP. The EORTC QLQ-C30 was found to be a valid and readily available test for quality-of-life assessment in patients with CP.     

A comparison of pancreaticoduodenectomy and duodenum-preserving head resection for the treatment of chronic pancreatitis

Background:

For chronic pancreatitis, European prospective trials have concluded that duodenum-preserving head resections (DPHR) are associated with less morbidity and similar pain relief and quality of life (QoL) outcomes compared with pancreaticoduodenectomy (PD). However, DPHR procedures are seldom performed in North America.

Methods:

Patients undergoing PD or DPHR for unremitting pain secondary to chronic pancreatitis were retrospectively identified. Quality of life was assessed cross-sectionally using the European Organization for Research and Treatment of Cancer (EORTC) Quality-of-Life Questionnaire (QLQ-C30) and pancreatic cancer-specific supplemental module (QLQ-PAN26).

Results:

Eighty-one patients underwent either a Whipple PD (n= 59) or a DPHR (Bern, Beger or Frey procedure, n= 22) for the treatment of pain caused by chronic pancreatitis over a 5-year period. The characteristics of patients undergoing DPHR and PD procedures were similar. Duration of procedure (360 min vs. 245 min), duration of hospital stay (12.0 days vs. 9.5 days) and estimated blood loss (535 ml vs. 214 ml) were all significantly less for DPHR patients (P < 0.05). Thirty-day morbidity and mortality, postoperative pain relief and QoL scores did not differ significantly between groups.

Conclusions:

Duodenum-preserving head resection is equally as effective as PD in relieving pain and improving QoL in chronic pancreatitis patients, and involves a shorter hospital stay and less blood loss.     

Quality of life of patients with chronic lymphocytic leukemia: results of a longitudinal investigation over 1 yr

OBJECTIVES: The aim of this longitudinal study was to determine the long-term quality of life (QoL) of patients with chronic lymphocytic leukemia (CLL) and to investigate the relationship between QoL and sociodemographic and clinical parameters. METHODS: Ninety-seven patients suffering from CLL were asked to complete the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) four times over a period of 1 yr. Clinical data on disease and treatment characteristics were collected from medical records. For the purpose of comparison, EORTC QLQ-C30 scores were collected from 152 age- and gender-matched healthy controls. RESULTS: Seventy-six patients (age: median 68 yr, range 41-89) returned one or more questionnaires and were included in the statistical analysis. Compared with healthy controls CLL patients reported a lower QoL in almost all domains. No differences regarding QoL could be observed between CLL patients who had already received chemotherapy and those who had not. Moreover, female CLL patients were found to have remarkably lower QoL scores in the areas of emotional and social functioning than male patients. CONCLUSION: Patients suffering from CLL could have their QoL improved by more effective symptom management and psycho-oncological support. This could focus on specific symptoms such as fatigue and might have particular benefits for female patients with respect to their emotional and social well-being.     

Impact of gefitinib (‘Iressa’) treatment on the quality of life of patients with advanced non-small-cell lung cancer

Purpose: Patients with advanced non-small-cell lung cancer (NSCLC) have a short life expectancy; therefore, in addition to increasing their survival, improving their quality of life (QoL) is also an important treatment goal. Methods: We evaluated the QoL of patients with advanced NSCLC who were unfit to receive chemotherapy, failed to respond or progress following prior chemotherapy, who received subsequent treatment with gefitinib (‘Iressa’) on a compassionate use basis, using a standard QoL questionnaire, (EORTC) QLQ-C30 and the related lung cancer-specific module QLQ-LC13. Results: Analysis of the functional scales showed a trend towards improvement for role, emotional and cognitive scales, while a substantial stability was seen for general QoL scale. Analysis of the symptoms scales of QLQ-C30, showed a trend towards improvement for fatigue, dyspnoea, insomnia, and constipation, after one month of therapy. Fifty-six of the 57 patients were considered evaluable for response. One patient evidenced a partial response (patient is still on response), 29 patients had stable disease for a median duration of 5months (range 4–7 months), and 26 patients progressed. Conclusions: After treatment with Gefitinib, we observed maintenance of QoL in a group of patients with poor prognosis that would be expected to have a worsening QoL. Furthermore important symptoms like dyspnoea fatigue and pain in other parts, that usually afflict patients with NSCLC, showed a trend toward improvement after only one month of therapy. ‘Iressa is a trademark of the AstraZeneca group of companies     

Long-term health-related quality of life after pancreatic resection for malignancy in patients with and without severe postoperative complications

Background

Surgery for pancreatic cancer yields significant morbidity and mortality risks and survival is limited. Therefore, the influence of complications on quality of life (QoL) after pancreatic surgery is important. This study compares QoL in patients with and without severe complications after surgery for pancreatic (pre-)malignancy.

Treatment of CML using IFN-alpha: impact on quality of life

Treatment of chronic myeloid leukaemia (CML) with IFN-alpha (IFN) is known to confer significant survival benefit, but the drug's impact on quality of life (QoL) in CML is unclear. We describe a cross-sectional comparison of QoL in patients randomised to long-term treatment with IFN versus no IFN within the UK MRC CML 3 trial, assessing the long-term consequences and psychosocial side effects of IFN therapy. Patients completed the EORTC QoL QLQ-C30, an in-house leukaemia/IFN questionnaire, a brief assessment of sexual functioning and demographic details. In total, 163 eligible patients completed questionnaires (85% response). Patients receiving IFN reported significantly worse QoL for emotional, cognitive and social functioning, pain and dyspnoea (P<0.01), and marginally worse fatigue, nausea and vomiting (P<0.05). As expected from other IFN use, those on IFN experienced more flu-like and febrile symptoms and skin problems than those not on IFN. In all, 35% of patients stopped IFN before questionnaire completion. This made no material difference to the results, except that those continuing on IFN had slightly better self-assessed Global health/QoL than those who had stopped (P<0.03). IFN treatment adversely affected sexual health after allowing for age and gender. In conclusion, IFN treatment has a significant adverse impact on QoL. Patient awareness of the survival benefits and these QoL effects should enable better-informed decision-making. The impact on QoL of IFN dose, and of imatinib therapy versus IFN in early CP CML, are being investigated. QoL will need evaluating in future studies of combination treatment (IFN+imatinib).     

How severe is diabetes after total pancreatectomy? A case-matched analysis

Objectives

Total pancreatectomy (TP) is associated with significant morbidity and mortality. The severity of postoperative diabetes and existence of ‘brittle diabetes’ are unclear. This study sought to identify quality of life (QoL) and diabetes-specific outcomes after TP.

Methods

Patients who underwent TP were matched for age, sex and duration of diabetes with patients with type 1 diabetes. General QoL was assessed using the European Organization for Research and Treatment of Cancer (EORTC) core quality of life questionnaire QLQ-C30 and the PAN26 tool. Diabetes-specific outcomes were assessed using the Problem Areas in Diabetes (PAID) tool and an assessment of diabetes-specific complications and outcomes.

Results

A total of 123 patients underwent TP; 88 died (none of diabetic complications) and two were lost to follow-up. Of the remaining 33 patients, 28 returned questionnaires. Fourteen general and pancreas-specific QoL measurements were all significantly worse amongst the TP cohort (QLQ-C30 + PAN26). However, when diabetes-specific outcomes were compared using the PAID tool, only one of 20 was significantly worse. HbA1c values were comparable (P = 0.299), as were diabetes-related complications such as hypoglycaemic attacks and organ dysfunction.

Conclusions

Total pancreatectomy is associated with impaired QoL on general measures compared with that in type 1 diabetes patients. Importantly, however, there was almost no significant difference in diabetes-specific outcomes as assessed by a diabetes-specific questionnaire, or in diabetes control. This study does not support the existence of ‘brittle diabetes’ after TP.     

Long-term quality of life following pancreaticoduodenectomy

BACKGROUND/AIMS: This study examined long-term quality of life in an unselected consecutive cohort of patients undergoing pancreaticoduodenectomy, both Whipple and total, for benign and malignant disease. METHODOLOGY: Forty consecutive patients who underwent pancreaticoduodenectomy over a nine-year period formed the study group. The control group consisted of 58 age- and sex-matched patients undergoing open cholecystectomy during the same period. Quality of Life was assessed using the European Organisation for Research and Treatment of Cancer QLQ-C30 (core cancer module) and QLQ-PAN26 (pancreatic cancer module) questionnaires at a median of 42 months postoperatively. RESULTS: The Global Health Status of the study and control groups was similar, but significant differences were noted in certain individual scales. The benign group reported greater social and financial difficulties, and symptoms consistent with impaired exocrine function. The malignant group reported difficulties with daily physical and role functioning, concern for future health and individual symptoms such as fatigue, muscle weakness, and inability to gain weight. CONCLUSIONS: This study demonstrates that the overall quality of life of patients who underwent pancreaticoduodenectomy compared favorably with that of a control group. Significant differences did exist in some individual scales, in both the benign and malignant sub-groups, suggestive of exocrine insufficiency.     

EORTC QLQ-C30 assessment in Turkish patients with hematological malignancies

We aimed to evaluate the prevalences of self-reported anxiety and depression symptoms in hematological malignancy patients and to determine the association between the presence of these disorders and the results of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-30 (EORTC QLQ-C30). One hundred and forty patients with a diagnosis of a hematological malignancy completed the Hospital Anxiety and Depression Scale (HADS) and the General Health Questionnaire. Patients with higher anxiety scores were more frequently inpatients, had higher EORTC general symptom scores, and they had lower cognitive, emotional, social functioning and global quality of life (QoL) scores (all p values <0.05). Patients with higher depression scores had more frequently active disease and were inpatients; they had higher mean Eastern Cooperative Oncology Group performance scores, EORTC gastrointestinal system and general symptom scores, and significantly lower physical, role, emotional, social and cognitive functioning and global QoL scores (all p values <0.01). During follow-up, it was observed that survival curves of patients with active disease who had higher HADS depression scores tended to be shorter than those with lower scores (p = 0.1). Anxiety and depression are frequent in hematological malignancy patients and associated with poor QoL and performance status. In addition, the presence of self-reported depression might have a predictive value for poor prognosis.     

Decision-making in adult thalassemia patients undergoing unrelated bone marrow transplantation: quality of life, communication and ethical issues

Bone marrow transplantation (BMT) represents a potentially curative treatment of thalassemia. For patients without an HLA-identical sibling donor, recourse to an unrelated donor is a practicable option but the candidates and their families are faced with a difficult decision. They can either choose to continue the supportive therapy, with no chance of definitive cure, or they accept the mortality risk of BMT in the hope of obtaining a definitive resolution of the disease. We investigated the communication strategies and the post transplantation quality of life (QoL) in 19 adult thalassemia patients surviving after an unrelated donor BMT. The patients were given two questionnaires: a questionnaire to evaluate pre-transplantation communication factors and the EORTC QLQ-C30 questionnaire to assess global QoL. All patients were satisfied with the communication modalities employed by the physicians. The global post transplantation QoL in our patient cohort was found to be good. The approach used in this study may offer a contribution to understanding the decision-making process leading to the choice of a treatment with a high mortality risk for a chronic, non-malignant disease. Finally, some ethical issues of this therapeutic approach are briefly addressed.     

A population-based study of chronic pancreatitis in Finland: Effects on quality of life

Background/ObjectivesIn Finland the incidence of chronic pancreatitis (CP) is high compared to that in most European countries. Recent epidemiological data is lacking. Our aim was to investigate the current epidemiologic and behavioural data on CP patients in Finland.MethodsCP patients according to M-ANNHEIM criteria in Tampere University Hospital (TAUH) during 2014–2015 were included. Aetiology, time from diagnosis, pancreatic function, treatment, complications, smoking, alcohol consumption (AUDIT) and quality of life (QoL) (QLQ C30, PAN26) were gathered.Results235 CP patients (57 (26–88) years, 65% men) were included. Time since diagnosis was 5.5 (1–41) years. Aetiology was alcohol in 67%, and smoking contributed in 54%. Of these patients 78% continued smoking and 58% continued to consume alcohol even after CP diagnosis. CP related complications were common. Pseudocysts were more common in alcohol related CP than in non-alcohol related CP (60% vs. 38%, p < 0.05). Reported QoL and pain were worse in the CP patients than in controls. Alcohol consumption differed from that of the Finnish population; the CP patients were either total abstainers or heavy alcohol consumers.ConclusionsCP constitutes a great burden on the health care system and on the patients. The patients frequently develop complications and symptoms and their QoL is inferior to that of controls. The most important measure to halt the progression of CP would be to prevent acute phases and for patients to stop smoking, which does not happen in many CP patients. It would be beneficial to increase awareness among CP patients and medical professionals.     

Relationship between the magnitude of symptoms and the quality of life: a cluster analysis of lung cancer patients in Brazil

OBJECTIVE:

Lung cancer patients often experience profound physical and psychosocial changes as a result of disease progression or treatment side effects. Fatigue, pain, dyspnea, depression, and sleep disturbances appear to be the most common symptoms in such patients. The objective of the present study was to examine the prevalence of symptoms in lung cancer patients in order to identify subgroups (clusters) of patients, grouped according to the magnitude of the symptoms, as well as to compare the quality of life among the identified subgroups.

METHODS:

A cross-sectional study involving agglomerative hierarchical clustering. A total of 50 lung cancer patients were evaluated in terms of their demographic characteristics and their scores on three quality of life questionnaires, namely the 30-item European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), the Functional Assessment of Cancer Therapy-Lung, and the Medical Outcomes Study 36-item Short-form Survey. The cluster analysis took into account the magnitude of the most prevalent symptoms as assessed by the EORTC QLQ-C30 symptom scale scores; those symptoms were fatigue, pain, dyspnea, and insomnia.

RESULTS:

Three clusters (subgroups)_of patients were identified on the basis of the magnitude of the four most prevalent symptoms. The three subgroups of patients were as follows: patients with mild symptoms (n = 30; 60%); patients with moderate symptoms (n = 14; 28%); and patients with severe symptoms (n = 6; 12%). The subgroup of patients with severe symptoms had the worst quality of life, as assessed by the total scores and by the integrated domains of all three instruments.

CONCLUSIONS:

This study highlights the importance of symptom cluster assessment as an important tool to assess the quality of life of patients with chronic diseases, such as lung cancer.     

Pain severity reduces life quality in chronic pancreatitis: Implications for design of future outcome trials

Background/objectivesChronic pancreatitis (CP) is a disabling disease characterised by abdominal pain, and various pancreatic and extra-pancreatic complications. We investigated the interactions between pain characteristics (i.e. pain severity and its pattern in time), complications, and quality of life (QOL) in patients with CP.MethodsThis was a cross-sectional study of 106 patients with CP conducted at two North European tertiary medical centres. Detailed information on clinical patient characteristics was obtained from interviews and through review of the individual patient records. Pain severity scores and pain pattern time profiles were extracted from the modified brief pain inventory short form and correlated to QOL as assessed by the EORTC QLQ-C30 questionnaire. Interactions with exocrine and endocrine pancreatic insufficiency, as well as pancreatic and extra-pancreatic complications were analysed using regression models.ResultsPain was the most prominent symptom in our cohort and its severity was significantly correlated with EORTC global health status (r = −0.46; P < 0.001) and most functional and symptom subscales. In contrast the patterns of pain in time were not associated with any of the life quality subscales. When controlling for interactions from exocrine and endocrine pancreatic insufficiency no effect modifications were evident (P = 0.72 and P = 0.85 respectively), while the presence of pancreatic and extra-pancreatic complications was associated with an almost 15% decrease in life quality (P = 0.004).ConclusionsPain severity and disease related complications significantly reduce life quality in patients with CP. This information is important in order to design more accurate and clinical meaningful endpoints in future outcome trials.     

Quality of life after stem cell transplantation: a patient, partner and physician perspective

Background: Although increasing data are available on quality of life (QOL) issues after stem cell transplantation (SCT), many issues are still unresolved. With the increasing use of transplants in non-curative situations, quality of life issues have become especially important. Methods: All patients who had undergone SCT and had no recurrent disease were asked to provide quality of life data using the EORTC QLQ-C30 questionnaire at about 2.5 (n=52) and 4.5 years (n=33) after transplantation. In addition, the patients' partners and physicians were asked to estimate the patients' quality of life. Results: Scores on the functional scales ranged from 65 to 80 and were comparable initially and at the 23-month follow-up. The initial, overall quality of life of the patients was 75. After an additional 23-month follow-up, the overall quality of life was 73. Fatigue, sleeping disturbances, and financial problems scored relatively high. Generally, in contrast to partners, physicians underestimated symptoms and overestimated functions and quality of life significantly. Conclusions: We conclude that SCT has a long-term impact on such quality of life issues as fatigue, sleep disturbances, dyspnea, and financial problems. Physicians tend to overestimate quality of life in their patients. With the increasing numbers of patients undergoing transplantation, more attention should be focussed on these issues.