Dataset Information

Patient-Perceived Outcomes and Quality of Life in ALS.

ABSTRACT: A variety of outcome measures are used in clinical practice and in research to assess patients with amyotrophic lateral sclerosis (ALS). However, there may be discordance between traditional outcome measures such as strength and physical function, and patient-perceived measures of well-being. One such self-perceived measure, reflecting the patient's view, is quality of life (QOL). QOL in patients with severe medical disorder is often underestimated by others. Patients with ALS often have high QOL, and this may persist throughout the disease due to shifting expectations and to reprioritization of factors contributing to QOL. QOL instruments can measure health-related QOL (HRQOL) or global QOL, and can be generic or disease-specific. HRQOL refers primarily to physical and mental health. Global QOL is much broader, and is also determined by non-health-related factors. The choice of a QOL instrument depends on whether the setting is routine patient care or clinical research, whether or not the outcome of a specific intervention is being assessed, and upon the expected efficacy or toxicity of the intervention. Global QOL instruments are best for individual clinical patient care or for comparing groups. HRQOL or a combination of HRQOL and global QOL instruments are most appropriate for assessing specific interventions.

SUBMITTER: Simmons Z

PROVIDER: S-EPMC4404446 | biostudies-literature | 2015 Apr

REPOSITORIES: biostudies-literature

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Patient-Perceived Outcomes and Quality of Life in ALS.

Simmons Zachary Z

Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics 20150401 2

A variety of outcome measures are used in clinical practice and in research to assess patients with amyotrophic lateral sclerosis (ALS). However, there may be discordance between traditional outcome measures such as strength and physical function, and patient-perceived measures of well-being. One such self-perceived measure, reflecting the patient's view, is quality of life (QOL). QOL in patients with severe medical disorder is often underestimated by others. Patients with ALS often have high QO ...[more]

PMID: 25502407

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Project description:BackgroundIn patients operated with laparoscopic aortobifemoral bypass (LABFB) for atherosclerotic obstruction in aortoiliac segment, the main focus of the reports published during the last two decades has been morbidity and mortality. The primary objective of this study was to examine the health-related quality of life (HRQL) in these patients before and after LABFB.Patients and methodsFifty consecutive patients (27 females) with Trans-Atlantic Inter-Society Consensus II, type D lesions were prospectively included. Short-Form 36 (SF-36) questionnaire was used to get information about the HRQL before LABFB and at 1, 3 and 6 months after the operation. Main indication for LABFB was intermittent claudication. Linear mixed-effect models were used to assess changes in HRQL over time. Age, gender, smoking, blood loss, operation time, concomitant operation, the American Society of Anesthesiologists category, length of hospital stay, previous vascular procedures and aorta cross-clamping were used as fixed factors and their impact on the physical components of the SF-36, as well as the summary scores were determined with univariate analysis. Variables with P<0.2 were included in the multivariate regression analysis. P<0.05 was considered statistically significant.ResultsStatistically significant improvement was found in all SF-36 domains as well as in the summary scores after LABFB compared to the preoperative scores. The improvement in scores was substantial already at 1 month and the effect was maintained at 3 and 6 months survey time points. Concomitant operations had a statistically significant negative impact on the physical components of SF-36. Data completeness of item questionnaires was 93% in the whole material. Reliability scale and homogeneity estimates for the eight domains had high internal consistency.ConclusionPatients operated with LABFB for Trans-Atlantic Inter-Society Consensus II, type D lesions have reduced HRQL. LABFB leads to substantial and statistically significant improvement in the patients' HRQL, when examined with SF-36. These results need to be replicated by a randomized clinical trial.

Project description:BackgroundLittle is known about health-related quality of life (HRQOL) following treatment for bladder cancer (BC).ObjectiveTo determine this, we undertook a cross-sectional survey covering 10% of the English population.Design, setting, and participantsParticipants 1-10 yr from diagnosis were identified through national cancer registration data.InterventionA postal survey was administered containing generic HRQOL and BC-specific outcome measures. Findings were compared with those of the general population and other pelvic cancer patients.Outcome measurements and statistical analysisGeneric HRQOL was measured using five-level EQ-5D (EQ-5D-5L) and European Organization for Research and Treatment of Cancer quality of life questionnaire (EORTC QLQ)-C30. BC-specific outcomes were derived from EORTC QLQ-BLM30 and EORTC QLQ-NMIBC24.Results and limitationsA total of 1796 surveys were completed (response rate 55%), including 868 (48%) patients with non-muscle-invasive BC, 893 (50%) patients who received radiotherapy or radical cystectomy, and 35 (1.9%) patients for whom treatment was unknown. Most (69%) of the participants reported at least one problem in any EQ-5D dimension. Age/sex-adjusted generic HRQOL outcomes were similar across all stages and treatment groups, whilst problems increased with age (problems in one or more EQ-5D dimensions: <65 yr [67% {95% confidence interval or CI: 61-74}] vs 85+ yr [84% {95% CI: 81-89}], p = 0.016) and long-term conditions (no conditions [53% {95% CI: 48-58}] vs more than four conditions [94% {95% CI: 90-97}], p < 0.001). Sexual problems were reported commonly in men, increasing with younger age and radical treatment. Younger participants (under 65 yr) reported more financial difficulties (mean score 20 [95% CI: 16-25]) than those aged 85+ yr (6.8 [4.5-9.2], p < 0.001). HRQOL for BC patients (for comparison, males with problems in one or more EQ-5D dimensions 69% [95% CI: 66-72]) was significantly worse than what has been found after colorectal and prostate cancers and in the general population (51% [95% CI: 48-53], all p < 0.05).ConclusionsHRQOL following BC appears to be relatively independent of disease stage, treatment, and multimodal care. Issues are reported with sexual function and financial toxicity. HRQOL after BC is worse than that after other pelvic cancers.Patient summaryPatients living with bladder cancer often have reduced quality of life, which may be worse than that for other common pelvic cancer patients. Age and other illnesses appear to be more important in determining this quality of life than the treatments received. Many men complain of sexual problems. Younger patients have financial worries.

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Patient-Perceived Outcomes and Quality of Life in ALS.

Publications

Patient-Perceived Outcomes and Quality of Life in ALS.

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