Quality Of Life Issues In Patients Research Articles

Prospective assessment of end-of-life symptoms and quality of life in patients with high-grade glioma

Abstract Background Glioblastoma and high-grade glioma (HGG) remain non-curable diseases. Symptoms and Quality-of-life (QoL) in the end-of-life (EoL) phase have not been prospectively studied with validated instruments. Therefore, we prospectively assessed symptom progression, symptom management, and hospice utilization in patients with treatment-refractory progressive HGG. Methods Patients failing bevacizumab and presenting with a Karnofsky performance score of ≤60, and their caregivers, were eligible. Symptoms, medication, and clinical management were tracked with serial telephone calls every 2 weeks until death utilizing clinical evaluations and the MD Anderson Symptom Inventory Brain Tumor Module (MDASI-BT). The MDASI-BT rates symptoms on a scale from 0 (no symptoms) to 10 (worst). Results Fifty-four patient-caregiver dyads were enrolled in the study. Amongst 50 evaluable patients, the most severe symptoms during the last 2 weeks prior to death were drowsiness (9.09 ± 1.44), difficulty with concentration (8.87 ± 2.29), fatigue (8.63 ± 2.03), difficulty speaking (8.44 ± 2.42), weakness (8.27 ± 3.44), and difficulty with understanding (7.71 ± 2.94). All symptoms, except weakness and memory impairment, which were high at baseline, showed statistically significant progression. Seizures were rare and did not progressively worsen near the end of life (1.38 ± 3.02). The decision-making composite score almost doubled during the EoL phase (8.58 ± 1.53). Conclusions This is the first prospective study describing symptoms and QoL issues in patients with HGG. Patients suffer from high morbidity in the EoL phase and should be offered early palliative and hospice care to assure proper symptom management and advance care planning.

Commentary - “Maxillomandibular Advancement for Obstructive Sleep Apnea Is Associated With Very Long-Term Overall Sleep-Related Quality-of-Life Improvement”

Purpose We sought to evaluate the effect of maxillomandibular advancement (MMA) on long-term subjective quality of life (QOL) in obstructive sleep apnea (OSA). Patients and Methods This was a retrospective cohort analysis of long-term postoperative QOL issues in patients who underwent MMA for polysomnogram-confirmed severe OSA (apnea-hypopnea index > 30). The inclusion criteria included a history of MMA in the treatment of OSA, willingness to complete the Ottawa Sleep Apnea Questionnaire (OSA-Q) survey, and minimum of 5-year follow-up. The OSA-Q was used to evaluate sleep quality, daytime function, physical health, mental and emotional health, and sexual health. The independent variable was time of follow-up, and the dependent variables were the responses to the OSA-Q. Data collection was completed, and statistical analyses were performed with the 1-sample Wilcoxon signed rank test with a median score of 3 (no change) to evaluate for significant changes in the categories. P Results A total of 27 of 51 eligible patients (53% response rate) responded to the questionnaire (15 men and 12 women). The average postoperative age was 59.1 ± 11.7 years, with an average follow-up period of 12.7 ± 3.8 years. Statistically significant long-term QOL improvements from MMA for OSA were found in overall QOL (mode, 4; P Conclusions MMA for OSA provided significant improvement in overall patient QOL as well as personal satisfaction, sleep quality, and functional outcomes at very long-term follow-up at an average of more than 12 years after surgery. MMA for OSA produces significant very long-term subjective QOL improvement.

Maxillomandibular Advancement for Obstructive Sleep Apnea Is Associated With Very Long-Term Overall Sleep-Related Quality-of-Life Improvement

We sought to evaluate the effect of maxillomandibular advancement (MMA) on long-term subjective quality of life (QOL) in obstructive sleep apnea (OSA). This was a retrospective cohort analysis of long-term postoperative QOL issues in patients who underwent MMA for polysomnogram-confirmed severe OSA (apnea-hypopnea index>30). The inclusion criteria included a history of MMA in the treatment of OSA, willingness to complete the Ottawa Sleep Apnea Questionnaire (OSA-Q) survey, and minimum of 5-year follow-up.The OSA-Q was used to evaluate sleep quality, daytime function, physical health, mental and emotional health, and sexual health. The independent variable was time of follow-up, and the dependent variables were the responses to the OSA-Q. Data collection was completed, and statistical analyses were performed with the 1-sample Wilcoxon signed rank test with a median score of 3 (no change) to evaluate for significant changes in the categories.P<.05 was considered statistically significant. A total of 27 of 51 eligible patients (53% response rate) responded to the questionnaire (15 men and 12 women). The average postoperative age was 59.1±11.7years, with an average follow-up period of 12.7±3.8years. Statistically significant long-term QOL improvements from MMA for OSA were found in overall QOL (mode, 4; P<.05) and in the categories of personal satisfaction (mode, 5; P<.01), sleep quality (mode, 4; P<.01), and functional outcomes (mode, 4; P<.05). MMA for OSA provided significant improvement in overall patient QOL as well as personal satisfaction, sleep quality, and functional outcomes at very long-term follow-up at an average of more than 12years after surgery. MMA for OSA produces significant very long-term subjective QOL improvement.

Development and Initial Validation of a Questionnaire to Measure Health-Related Quality of Life of Adults with Common Variable Immune Deficiency: The CVID_QoL Questionnaire

Generic health status quality of life (QoL) instruments have been used in patients with common variable immune deficiency (CVID). However, by their nature, these tools may over- or underestimate the impact of diseases on an individual's QoL. The objective of this study was to develop and validate a questionnaire to measure specific-health-related QoL for adults with CVID (CVID_QoL). The 32-item content of the CVID_QoL questionnaire was developed using focus groups and individual patient interviews. Validation studies included 118 adults with CVID who completed Short Form-36, Saint George Respiratory Questionnaire, General Health Questionnaire-12, and EuroQol-5D questionnaire in a single session. Principal component and factor analysis solutions identified 3 scores to be similar in number and content for each solution. Validation of 3 factor scores was performed by construct validity. Reproducibility, reliability, convergent validity, and discriminant validity were evaluated. Matrices consisting of correlations between the 32 items in the CVID_QOL were calculated. Factor analysis identified 3 dimensions: emotional functioning (EF), relational functioning (RF), and gastrointestinal and skin symptoms (GSS). The instrument had good internal consistency (Cronbach's alpha, min. 0.74 for GSS, max. 0.84 for RF, n= 118) and high reproducibility (intraclass correlation coefficient, min. 0.79 for RF, max 0.90 for EF, n=27). EF and RF scores showed good convergent validity correlating with conceptually similar dimensions of other study scales. Acute and relapsing infections had a significant impact on EF and RF. This study provides evidence of the reliability and construct validity of the CVID_QoL to identify QoL issues in patients with CVID that may not be addressed by generic instruments.

Quality-of-Life Analysis of the German Prospective Multicentre Trial of Single-cycle Adjuvant BEP Versus Retroperitoneal Lymph Node Dissection in Clinical Stage I Nonseminomatous Germ Cell Tumours

BackgroundThe superiority of one course of bleomycin, etoposide, and cisplatin (BEP) over retroperitoneal lymph node dissection (RPLND) as adjuvant treatment in patients with clinical stage I nonseminomatous germ cell tumours (CSI-NSGCT) in terms of recurrence has been shown. However, studies providing validated prospective quality-of-life (QoL) data in patients with CSI-NSGCT treated with only one cycle of BEP are lacking. ObjectiveTo examine and compare QoL issues in patients with CSI-NSGCT after adjuvant treatment. Design, setting, and participantsBetween 1996 and 2005, we randomly assigned a total of 382 patients with CSI-NSGCT to receive either one course of BEP or RPLND after orchiectomy. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire (QLQ-C30) plus additional scales questionnaire (QLQ-C30+) was completed prospectively according to an a priori schedule, with a final assessment in 2011. Outcome measurements and statistical analysisWe used the Mann-Whitney U test to detect a difference ≥17% on the global QoL item “overall strain.” Results and limitationsOf 382 patients randomised to receive either one course of BEP (n=191, arm A) or RPLND (n=191, arm B), completed QLQ-C30+ and data on treatment response were available in 162 and 164 patients, respectively. All participants were included for intention-to-treat analysis. We evaluated treatment-related changes in QoL for the follow-up period up to 3 yr after treatment. We observed no significant differences between the treatment groups in any QoL domain except alopecia. Compared to QoL assessments in the general population, both arms had already recovered to normal values in all items by 6mo. ConclusionsThe QoL assessment of this large randomised trial was not able to detect significant differences in QoL scores between patients undergoing RPLND and BEP in a community-based setting. Patient summaryRetroperitoneal lymph node dissection and bleomycin, etoposide, and cisplatin are two adjuvant treatment options for patients with CSI-NSGCT after orchiectomy. Quality of life had already recovered to normal levels in both groups by 6mo after treatment. No clinically relevant differences were detected.

Quality-of-life issues in patients with ovarian cancer and their caregivers: a review.

Significant progress has been made towards the treatment of ovarian cancer resulting in longer median survival despite a persistent low cure rate. Relatively few studies have examined the impact of the cancer and its treatment on the patients and their caregivers due to the difficulty in the definition and measurement of the Quality of Life (QOL) concept. A review of the literature revealed significant alterations in the quality of life of ovarian cancer patients during treatment and long term follow ups. For the caregivers, it is important for health care providers to realize that: 1) caregivers are being asked to assume an increasing number of complex care giving tasks at home, 2) there exists a high proportion of unmet caregiver needs, 3) the care giving experience includes both positive and negative elements and, 4) perception of caregivers' burden is positively linked to negative reactions to care giving. Supportive programs for patients and caregivers should be designed with these needs in mind. Future research should study the best way to incorporate results of quality of life assessments into routine treatment decision-making. Obstetricians & Gynecologists, Family Physicians. After completion of this article, the reader should be able to outline the current data on QOL issues in patients with ovarian cancer, and to describe potential working definitions of QOL.

Health-related quality of life in patients with progressive supranuclear palsy.

We assessed health-related quality of life (QoL) of patients with progressive supranuclear palsy (PSP), identified the most important QoL issues in patients with this disorder, and assessed the usefulness of existing QoL measures in patients with PSP. Twenty-seven patients in all stages of PSP and their carers underwent a semistructured in-depth interview on the impact of PSP and a neurological examination. They were also asked to complete existing measures of QoL and depression. An item-pool of issues relevant to QoL of patients with PSP was created from the patient and carer interviews. Carers and patients largely agreed on issues relevant for patients' QoL but more carers than patients considered symptoms of frontal lobe dysfunction as problematic for the patients. There was no association of QoL with age and gender, as assessed in interviews and on two QoL instruments. QoL deteriorated with increasing disease duration and severity and greater cognitive impairment and was associated with worse depression scores. While the generic SF-36 was not found to be useful to assess QoL in PSP, feasibility and validity for the PDQ-39 and the EQ-5D were acceptable in this study. However, additional issues relevant to patients with PSP that were not addressed in these instruments included visual disturbances, dysarthria, dysphagia, muddled thinking, confusion, and apathy. The generic EQ-5D and the Parkinson's disease-specific PDQ-39 are useful instruments to assess QoL in patients with PSP. However, they lack questions on important aspects of QoL in PSP that were reported by patients and carers in semistructured interviews. The item pool created in these interviews provides the basis for the development of disease-specific QoL instruments for patients with PSP.