Specific Health-related Quality Of Life Research Articles

The long term impact of cataract surgery on quality of life, activities and poverty: results from a six year longitudinal study in Bangladesh and the Philippines.

BackgroundCataract surgery has been shown to improve quality of life and household economy in the short term. However, it is unclear whether these benefits are sustained over time. This study aims to assess the six year impact of cataract surgery on health related quality of life (HRQoL), daily activities and economic poverty in Bangladesh and The Philippines.Methods and FindingsThis was a longitudinal study. At baseline people aged ≥50 years with visual impairment due to cataract (‘cases’) and age-, sex-matched controls without visual impairment were interviewed about vision specific and generic HRQoL, daily activities and economic indicators (household per capita expenditure, assets and self-rated wealth). Cases were offered free or subsidised cataract surgery. Cases and controls were re-interviewed approximately one and six years later. At baseline across the two countries there were 455 cases and 443 controls. Fifty percent of cases attended for surgery. Response rates at six years were 47% for operated cases and 53% for controls. At baseline cases had poorer health and vision related QoL, were less likely to undertake productive activities, more likely to receive assistance with activities and were poorer compared to controls (p<0.05). One year after surgery there were significant increases in HRQoL, participation and time spent in productive activities and per capita expenditure and reduction in assistance with activities so that the operated cases were similar to controls. These increases were still evident after six years with the exception that time spent on productive activities decreased among both cases and controls.ConclusionCataract causing visual loss is associated with reduced HRQoL and economic poverty among older adults in low-income countries. Cataract surgery improves the HRQoL of the individual and economy of the household. The findings of this study suggest these benefits are sustained in the long term.

Health-related quality of life and functionality in elderly men and women before and after a fall-related wrist fracture

To evaluate health-related quality of life (HRQoL) and functionality among older men and women who suffered a wrist fracture because of a fall and to identify postfracture consequences. Observational, prospective cohort study of patients recruited in the emergency departments (ED) of six public hospitals of the Basque Health Service and one of the Catalan Health Service. Two groups of adults aged 65 or older were recruited: 960 with wrist fractures because of falls (fracture cohort) and 119 without fall-related wrist fractures in the previous year (non-fracture cohort). We collected sociodemographical and clinical data; general and specific HRQoL data measured by the 12-Item Short Form Health Survey (SF-12) and a short version of the Disabilities of the Arm, Shoulder, and Hand instrument (QuickDASH); and data about basic (BADL) and instrumental (IADL) activities of daily living, measured by the Barthel Index and the Lawton and Brody Index (LBI). Women with wrist fractures exhibited greater declines than men 6 months after the fall in all questionnaires except the LBI, and greater declines than those in the non-fracture cohort independent of gender. Patients aged 80 years and older presented with worse baseline scores in all the outcome measures and lost more HRQoL and functionality after wrist fractures. Women and older individuals experienced the greatest reductions in HRQoL and functionality after a fall-related wrist facture, suggesting that they might merit special attention in clinical care and public health policy. Specific prevention strategies may be needed to avoid or reduce the consequences of fall-related wrist fractures.

Health-related quality of life in the Cambridge City over-75s Cohort (CC75C): development of a dementia-specific scale and descriptive analyses.

BackgroundThe assessment of Health Related Quality of Life (HRQL) is important in people with dementia as it could influence their care and support plan. Many studies on dementia do not specifically set out to measure dementia-specific HRQL but do include related items. The aim of this study is to explore the distribution of HRQL by functional and socio-demographic variables in a population-based setting.MethodsDomains of DEMQOL’s conceptual framework were mapped in the Cambridge City over 75’s Cohort (CC75C) Study. HRQL was estimated in 110 participants aged 80+ years with a confirmed diagnosis of dementia with mild/moderate severity. Acceptability (missing values and normality of the total score), internal consistency (Cronbach’s alpha), convergent, discriminant and known group differences validity (Spearman correlations, Wilcoxon Mann-Whitney and Kruskal-Wallis tests) were assessed. The distribution of HRQL by socio-demographic and functional descriptors was explored.ResultsThe HRQL score ranged from 0 to 16 and showed an internal consistency Alpha of 0.74. Validity of the instrument was found to be acceptable. Men had higher HRQL than women. Marital status had a greater effect on HRQL for men than it did for women. The HRQL of those with good self-reported health was higher than those with fair/poor self-reported health. HRQL was not associated with dementia severity.ConclusionsTo our knowledge this is the first study to examine the distribution of dementia-specific HRQL in a population sample of the very old. We have mapped an existing conceptual framework of dementia specific HRQL onto an existing study and demonstrated the feasibility of this approach. Findings in this study suggest that whereas there is big emphasis in dementia severity, characteristics such as gender should be taken into account when assessing and implementing programmes to improve HRQL.

Abstract T P304: Disordered Attention May Persist After Resolution of Post-Stroke Delirium

Introduction: Delirium after acute stroke has been associated with worse outcomes but the effect on domain specific health-related quality of life (QOL) is less well-defined. We hypothesized that post-stroke delirium is associated with worse QOL. Methods: A prospective cohort of acute ischemic stroke patients was screened for post-stroke delirium. Delirium was diagnosed using the Confusion Assessment Method. Patient variables were prospectively recorded including initial NIHSS score and medical complications. Six QOL domains were assessed at three months post-stroke using Neuro-QOL (a validated patient-reported outcome tool that calculates T scores with means of 50 and standard deviations of 10): upper and lower extremity function, social roles satisfaction, fatigue, executive function (planning, calculating, and learning), and general cognitive concerns ([GCC] perceived attention, memory, and decision difficulties). Functional outcomes at 3 months were also obtained using the modified Rankin Scale (mRS, a validated outcome measure from 0, no symptoms, to 6, death). Univariate associations between delirium and QOL domains were identified and linear regression models were developed for domains with significant associations. Results: Over 10 months 246 patients (56% male, mean 65 years) met inclusion criteria. Delirium occurred in 30 (12%) patients. Three month follow up exceeded 90%. Of the Neuro-QOL domains, only GCC was significantly different between those with delirium and those without (T-scores 48.6 vs. 53.4, p=0.03). The mRS outcomes did not differ between those with delirium and those without (median [interquartile range], 1 [0-3] vs 1 [0-2]; p=0.59). Delirium (Beta -3.8, p=0.02) and initial NIHSS (Beta -0.25, p=0.006) were associated with worse GCC after correction for covariates. Conclusion: Our finding that post-stroke delirium is independently associated with worse measures of cognition at three months suggests that the disordered attention of delirium may persist long term. Delirium may impair recovery after stroke or may represent a separate mechanism of neurologic injury not well characterized by global outcome scales like the mRS.

Do generic measures fully capture health-related quality of life in adult, general critical care survivors?

We examined the extent to which the two generic health- related quality of life (HRQL) measures recommended for use in adult, general critical care [1] - the SF-36 and EQ-5D - captured survivors' HRQL, which is important in assessing the effectiveness of critical care. Unlike other fields of healthcare that employ both generic and specific HRQL measures, most recent studies in critical care have used only generic measures, despite uncertainty as to their appropriateness.

Measuring the Quality of Life of Patients with Cancer

What is quality of life? Clinical trials have long been dominated by clinically based endpoints, but research has proved that health-related quality of life (HRQoL) can only be captured accurately by patients themselves using patient-reported outcomes (PROs). The United States Food and Drug Administration defines PROs as the measurement of any aspect of a patient’s health status that comes directly from the patient, that is, a measurement taken without interpretation of the patient’s responses by a physician or anyone else. The EORTC QLQ-C30 is the most widely cancer specific HRQoL questionnaire used for PROs in the world. Developed in 1991 by the EORTC Quality of Life Group, it has been translated into more than 60 languages and has over 40 developed or under development cancer-specific modules. One of the key challenges faced is pooling data and performing meta-analyses of the results of closed trials. The EORTC Patient Reported Outcomes and Behavioural Evidence (PROBE) team is dedicated to the meta-analysis of EORTC randomised clinical trial quality of life results. During the last 5 years, pooled data have revealed important results, such as prognostic indicators of survival, which have informed clinical practice. This research shows how the patient perspective in palliative and curative EORTC trials has been considered of major importance. The inclusion of patient perspective in drug development shows that a more comprehensive HRQoL assessment has taken place over time as better instruments have become available. As clinicians, regulatory bodies and industry acknowledge the value of the patient perspective, we expect that EORTC will continue including HRQoL endpoints where appropriate.

Long-Term Women-Reported Quality of Life After Radical Cystectomy and Orthotopic Ileal Neobladder Reconstruction

The purpose of this study was to determine health-related quality of life (HRQoL) among long-term disease-free survivors in women who underwent radical cystectomy (RC) for urothelial carcinoma and orthotopic ileal neobladder (ONB) reconstruction, using validated patient-reported outcome instruments. From 2000 to 2011, a total of 46 women with urothelial bladder carcinoma had RC and ONB at our institution; 31 (67 %) eligible women completed 3 validated questionnaires: the medical outcome study short form 12 (SF-12), the urinary symptom profile, and the Contilife, respectively evaluating general HRQoL, voiding function, and urinary incontinence specific HRQoL. Unadjusted analyses were performed to analyze standardized measures of HRQoL and voiding symptoms; p < 0.05 was considered significant. The mean follow-up was 5.7 years; 24 women (77 %) considered their health as good, very good, or excellent. The SF-12 physical and mental scores were not significantly different between the population study and the general population (p > 0.05). A total of 20 women (65 %) declared to be fully continent. Daytime incontinence, nighttime incontinence, and hypercontinence were reported by 26, 29, and 31 % of women, respectively. On unadjusted analysis, incontinence was associated with age > 65 years at the time of surgery (p < 0.001). Hypercontinence was not associated with any variable. This study suggests that in the setting of radical cystectomy in women, ileal neobladder reconstruction provides long-term satisfaction with maintained HRQoL. For properly selected women, orthotopic neobladder can be considered an appropriate diversion choice.

Docetaxel versus active symptom control for refractory oesophagogastric adenocarcinoma (COUGAR-02): an open-label, phase 3 randomised controlled trial

Second-line chemotherapy for patients with oesophagogastric adenocarcinoma refractory to platinum and fluoropyrimidines has not shown benefits in health-related quality of life (HRQoL). We assessed whether the addition of docetaxel to active symptom control alone can improve survival and HRQoL for patients. For this open-labelled, multicentre trial, we recruited patients aged 18 years or older from 30 UK centres. Patients were eligible if they had an advanced, histologically confirmed adenocarcinoma of the oesophagus, oesophagogastric junction, or stomach that had progressed on or within 6 months of treatment with a platinum-fluoropyrimidine combination. Patients could have an Eastern Cooperative Oncology Group performance status of 0-2. We randomly assigned patients using a central, computerised minimisation procedure to receive docetaxel plus active symptom control, or active symptom control alone (1:1; stratified by disease status, disease site, duration of response to previous chemotherapy, and performance status). Docetaxel was given at a dose of 75 mg/m(2) by intravenous infusion every 3 weeks for up to six cycles. The primary endpoint was overall survival, analysed by intention to treat. This is the report of the planned final analysis. This study is an International Standardised Randomised Controlled Trial, number ISRCTN13366390. Between April 21, 2008, and April 26, 2012, we recruited 168 patients, allocating 84 to each treatment group. After a median follow-up of 12 months [IQR 10-21]) and 161 (96%) deaths (80 in the docetaxel group, 81 in the active symptom control group), median overall survival in the docetaxel group was 5.2 months (95% CI 4.1-5.9) versus 3.6 months (3.3-4.4) in the active symptom control group (hazard ratio 0.67, 95% CI 0.49-0.92; p=0.01). Docetaxel was associated with higher incidence of grade 3-4 neutropenia (12 [15%] patients vs no patients), infection (15 [19%] patients vs two [3%] patients), and febrile neutropenia (six [7%] patients vs no patients). Patients receiving docetaxel reported less pain (p=0.0008) and less nausea and vomiting (p=0.02) and constipation (p=0.02). Global HRQoL was similar between the groups (p=0.53). Disease specific HRQoL measures also showed benefits for docetaxel in reducing dysphagia (p=0.02) and abdominal pain (p=0.01). Our findings suggest that docetaxel can be recommended as an appropriate second-line treatment for patients with oesophagogastric adenocarcinoma that is refractory to treatment with platinum and fluoropyrimidine. Cancer Research UK.

Pathological motivations for exercise and eating disorder specific health‐related quality of life

To examine associations among pathological motivations for exercise with eating disorder (ED) specific health-related quality of life (HRQOL). Survey data assessing ED severity (i.e., Eating Disorder Diagnostic Survey), ED specific HRQOL (i.e., Eating Disorders Quality of Life Instrument), and pathological motivations for exercise (i.e., Exercise Dependence Scale) were collected from female students (N = 387) at seven universities throughout the United States. Regression analyses were conducted to examine the associations among exercise dependence, ED-specific HRQOL and ED severity, and the interaction of exercise dependence and ED severity on HRQOL scores. The overall model examining the impact of ED severity and exercise dependence (independent variables) on HRQOL (dependent variable) was significant and explained 16.1% of the variance in HRQOL scores. Additionally, the main effects for ED severity and exercise dependence and the interaction among ED severity and exercise dependence were significant, suggesting that the combined effects of ED severity and exercise dependence significantly impacts HRQOL. Our results suggest that pathological motivations for exercise may exacerbate ED's detrimental impact on HRQOL. Our results offer one possible insight into why exercise may be associated with deleterious effects on ED HRQOL. Future research is needed to elucidate the relationship among psychological aspects of exercise, ED, and HRQOL.

Impact of symptom burden in post-surgical non-small cell lung cancer survivors

Pain, fatigue, dyspnea, and distress are commonly reported cancer-related symptoms, but few studies have examined the effects of multiple concurrent symptoms in longer-term cancer survivors. We examined the impact of varying degrees of symptom burden on health-related quality of life (HRQOL) and performance status in surgically treated non-small cell lung cancer (NSCLC) survivors. A sample of 183 NSCLC survivors 1-6 years post-surgical treatment completed questionnaires assessing five specific symptoms (pain, fatigue, dyspnea, depression, and anxiety), HRQOL, and performance status. The number of concurrent clinically significant symptoms was calculated as an indicator of symptom burden. Most survivors (79.8 %) had some degree of symptom burden, with 30.6 % reporting one clinically significant symptom, 27.9 % reporting two symptoms, and 21.3 % reporting three or more symptoms. Physical HRQOL significantly decreased as the degree of symptom burden increased, but mental HRQOL was only significantly decreased in those with three or more symptoms. Receiver-operating characteristic (ROC) curves showed that having multiple concurrent symptoms (two or more) was most likely associated with limitations in functioning (area under a ROC curve = 0.75, sensitivity = 0.81, specificity = 0.54). Two or more clinically significant symptoms are identified as the "tipping point" for showing adverse effects on HRQOL and functioning. This highlights the need for incorporating multiple-symptom assessment into routine clinical practice. Comprehensive symptom management remains an important target of intervention for improved post-treatment HRQOL and functioning among lung cancer survivors.

Health related quality of life and mental distress after PCI: restoring a state of equilibrium.

BackgroundPatient self reported measures for Health Related Quality of Life (HRQOL) and mental distress are frequently used to evaluate outcome of therapeutic strategies in cardiac patients.Our study aims to describe changes in HRQOL and mental distress after percutaneous coronary intervention (PCI) focusing on temporal pattern of change and interdependences between both outcome measures.Method163 PCI patients recruited at 7 cardiovascular care units in Austria answered MacNew Health Related Quality of Life and Hospital Anxiety and Depression Scale (HADS) questionnaires during hospital stay after intervention and at 1, 6, 12 and 24 months.ResultsImprovement of MacNew HRQOL was found up to 6 month after PCI. Mental distress declined during the first month of the follow-up period. MacNew HRQOL is negatively correlated to mental distress. The relationship could be well described by a linear regression with MacNew HRQOL as dependent and HADS Total score as independent variable. The explained variance (R2) of the regression equation increases drastically from 45% at the baseline to a level between 67% and 77% in the follow up.ConclusionOur data suggest that the regression equation describing the relation between MacNew HRQOL and HADS-Total score six month after PCI defines a state of equilibrium: In absence of actual symptoms of coronary artery disease (CAD) both measures reflect the general health status and the general attitude underlying the self-assessment of health. At the baseline this equilibrium is imbalanced because the symptoms of CAD have a more pronounced impact on the disease specific MacNew HRQOL measure than on the non-disease specific HADS measure for mental distress. In order to use the MacNew questionnaire as a monitoring and/or prognostic tool it seems promising to refer to the state of equilibrium to define expectancy values for successful treatment.

Association between anthropometric indices and quality of life in menopausal women

Objective: To investigate whether body mass index (BMI), abdominal obesity or fat distribution influence the quality of life of postmenopausal women.Methods: Subjects in this cross-sectional study were 233 postmenopausal women (aged 45–70 years) with an intact uterus and ovaries and who were sexually active and not using hormone therapy. Anthropometric measurements were recorded and subjects were interviewed using a specific health-related quality of life (HR-QoL) instrument, the MENQoL scale.Results: According to BMI values, 31.5% of the women were obese, 42.2% were overweight, 25.8% were normal weight and none were underweight. However, according to the MENQOL scale results, obese women scored significantly higher on symptoms for physical domains. The women with the android pattern of fat distribution had significantly higher scores in the vasomotor and physical domains (p < 0.05).Conclusions: Obesity did not affect global HR-QoL in postmenopausal women, but appeared to have an influence on the psychical domains. Other anthropometric measurements were not associated with differences in HR-QoL. Keeping the anthropometric indices in the normal/premenopausal might improve the quality of life in menopause women.

Prospective evaluation of health-related quality of life in patients with glioblastoma multiforme treated on a phase II trial of hypofractionated IMRT with temozolomide

To report health-related quality of life (HRQOL) in glioblastoma (GBM) patients treated on a phase II trial of hypofractionated intensity-modulated radiotherapy (hypo-IMRT) with temozolomide (TMZ). GBM patients received postoperative hypo-IMRT to 60 Gy in 10 fractions with TMZ. HRQOL was assessed using the EORTC quality of life questionnaire core-30 and the EORTC brain cancer module, performed at baseline, RT completion, 1 mo post-RT, and every 3 mos thereafter. Changes from baseline were calculated for each specific HRQOL scale. A ≥ 10 point change in any HRQOL scale from the mean baseline score was significant. 24 patients were treated. Compliance with HRQOL assessments at baseline, RT completion, and 1, 3, 6, 9, and 12 mos post-RT was 100, 96, 92, 79, 70, 68 and 53 %, respectively. Up to 12 mos post-RT, no significant changes were seen in global health status, physical functioning, role functioning, emotional functioning, fatigue, nausea, vision, headache or seizure. Significant improvement was seen in insomnia, future uncertainty, motor dysfunction and drowsiness. Significant worsening was observed in cognitive functioning, social functioning, appetite loss and communication deficit. 60 Gy hypo-IMRT in 6-Gy fractions with TMZ does not appear to negatively impact overall HRQOL.

AB0299 Quality of life in tunisian patients with rheumatoid arthritis: A cross-sectional study about 200 patients

BackgroundRheumatoid arthritis (RA) is a chronic inflammatory disabling disease with significant impact on the quality of life (QOL) of patients. Health-related quality of life (HRQOL) issues are assuming increasing importance...

PP002: Quality of life in bisphosphonates-using patients with the osteonecrosis of the jaws

Purpose Osteonecrosis of the jaw (ONJ) is a medical condition frequently associated with intravenous administration of bisphosphonate as chemotherapy in various types of cancers to prevent skeletal metastases. ONJ presents itself as exposed, necrotic bone. The primary aim of this study is to determine the threshold at which ONJ impacts health related quality of life (HRQoL) and modifies bisphosphonate treatment decisions. Material and methods A questionnaire was developed based on CDC’s HRQoL–14 “Healthy Days Measure” and WHOQoL-BREF questionnaires in collaboration with oncology, psychiatry and QoL experts. Subjects were chosen randomly from the clinic’s ONJ patients and 14 were deemed eligible for this survey. Oral health-specific QoL before and after ONJ was determined with the Oral Health Impact Profile (OHIP). OHIP scores were transformed to EQ5D utilities and adjusted for MBC (published utility for MBC = 0.63). Standardized health states for bone cancer and ONJ were used as guidelines. Results The study included 14 patients from the hospital’s Oral and Maxilofacial Surgery Clinic. The mean OHIP was 1.7 pre- ONJ and 8.3 after (0–28 scale). All domains were affected, with overall function and pain having the largest change. A larger OHIP score was linked to a greater number of symptoms. Rank order was appropriate and consistent across instruments. Conclusions Preliminary results suggest that the study design was. Both oral-health specific and global HRQoL instruments determined QoL changes associated with ONJ. Further QoL research may be needed.

Specific Instruments to Assess Quality of Life in Children and Adolescents with Asthma

ObjectiveTo identify and describe specific instruments to assess health-related quality of life (HRQoL) in children and adolescents with asthma. Data source: Searches were performed in the PubMed, Ovid, and LILACS databases using different combinations of key words (MeSH terms), selecting original articles on the development of specific HRQoL questionnaires, published in English, Portuguese, or Spanish, between 1990 and 2012. Data synthesis: A total of 15 instruments that met the inclusion criteria were identified. Most studies assessed reliability through internal consistency, reproducibility, and/ or sensitivity to changes. Validity was assessed by comparison with healthy controls (discordant validity) or factorial analysis. ConclusionsOf the 15 instruments, three are the most frequently used: Pediatric Asthma Quality of Life Questionnaire (PAQLQ), Pediatric Quality of Life Inventory 4.0 (PedsQL- Asthma), and Disability Kids (DISABKIDS). In general, these three tools have adequate psychometric characteristics and are practical to implement, but only PAQLQ has been culturally adapted to Brazil.

Specific instruments to assess quality of life in children and adolescents with asthma

ObjectiveTo identify and describe specific instruments to assess health-related quality of life (HRQoL) in children and adolescents with asthma. Data sourceSearches were performed in the PubMed, Ovid, and LILACS databases using different combinations of key words (MeSH terms), selecting original articles on the development of specific HRQoL questionnaires, published in English, Portuguese, or Spanish, between 1990 and 2012. Data synthesisA total of 15 instruments that met the inclusion criteria were identified. Most studies assessed reliability through internal consistency, reproducibility, and/or sensitivity to changes. Validity was assessed by comparison with healthy controls (discordant validity) or factorial analysis. ConclusionsOf the 15 instruments, three are the most frequently used: Pediatric Asthma Quality of Life Questionnaire (PAQLQ), Pediatric Quality of Life Inventory 4.0 (PedsQL-Asthma), and Disability Kids (DISABKIDS). In general, these three tools have adequate psychometric characteristics and are practical to implement, but only PAQLQ has been culturally adapted to Brazil.

Symptom burden and quality of life in advanced non-small cell lung cancer patients in France and Germany

BackgroundTo assess patient reported symptom burden and impact on disease specific health related quality of life (HRQOL) in advanced non-small cell lung cancer (NSCLC) patients. MethodsPatients with advanced (stage IIIB/IV) NSCLC in France (n=613) and Germany (n=600) were recruited into a multicenter, patient record-based cross-sectional study. Patient reported symptoms using the Lung Cancer Symptom Scale, which assesses fatigue, loss of appetite, shortness of breath, cough, pain and blood in sputum on a 0–100 visual analog scale. Disease specific and generic HRQOL were assessed using the Functional Assessment of Cancer Therapy-Lung (FACT-L) and the EuroQol five-dimensional questionnaire (EQ-5D) respectively. A multivariate regression analysis was performed with total FACT-L score as the dependent variable and symptom scores as predictors. Age, gender, stage and performance status were used as control variables. ResultsMajority of the patients were male (67%), Caucasian (93%) with an average age of 63 years. Fatigue, loss of appetite, shortness of breath, cough and pain were reported by ≥90% of patients. The mean health utility index score was found to be 0.58 and the mean general health status score was 58.0. Fatigue (β=−0.122; p<0.001), loss of appetite (β=−0.170; p<0.001), pain (β=−0.145; p<0.001), shortness of breath (β=−0.118; p<0.001) were found to be significant predictors of lung cancer specific quality of life as measured by the FACT-L total score. ConclusionFatigue, loss of appetite, shortness of breath and pain have a significant negative impact on patient reported disease specific HRQOL in advanced NSCLC patients.

Health-related quality of life and life satisfaction in colorectal cancer survivors: trajectories of adjustment

BackgroundThis longitudinal study describes the five year trajectories of health-related quality of life (HR-QOL) and life satisfaction in long term colorectal cancer survivors.Patients and methodsA population-based sample of 1966 colorectal cancer survivors were surveyed at six time points from five months to five years post-diagnosis. Predictor variables were: socio-demographic variables, optimism; cancer threat appraisal; perceived social support. Quality of life was assessed with the Functional Assessment of Cancer Therapy-Colorectal (HR-QOL); and the Satisfaction with Life Scale. Growth mixture models were applied to identify trajectory classes and their predictors.ResultsDistinct adjustment trajectories were identified for HR-QOL and life satisfaction. Lower optimism, poorer social support, a more negative cognitive appraisal, and younger age were associated with poorer life satisfaction, while survivors with less than 8 years of education had higher life satisfaction. This pattern was similar for overall HR-QOL except that educational level was not a significant predictor and later stage disease and female gender emerged as related to poorer outcomes. One in five survivors reported poorer constant HR-QOL (19.2%) and a small group had poor life satisfaction (7.2%); 26.2% reported constant high HR-QOL and 48.8% had high constant life satisfaction. Socioeconomic disadvantage and remoteness of residence uniquely predicted poorer outcomes in the colorectal cancer specific HR-QOL sub domain.ConclusionAlthough HR-QOL and subjective cognitive QOL share similar antecedents their trajectory patterns suggested they are distinct adjustment outcomes; with life satisfaction emerging as temporally stable phenomenon. Unique patterns of risk support suggest the need to account for heterogeneity in adjustment in longitudinal QOL studies with cancer survivors.

Initial development and validation of a mitochondrial disease quality of life scale

Mitochondrial diseases are a clinically diverse group of genetic disorders that often present to neurologists. Health related quality of life (HRQOL) is increasingly recognised as a fundamental patient based outcome measure in both clinical intervention and research. Generic outcome measures have been extensively validated to assess HRQOL across populations and different disease states. However, due to their inclusive construct, it is acknowledged that not all relevant aspects of a specific illness may be captured. Hence there is a need to develop disease specific HRQOL measures that centre on symptoms characteristic of a specific disease or condition and their impact. This study presents the initial conceptualisation, development and preliminary psychometric assessment (validity and reliability) of a mitochondrial disease specific HRQOL measure (Newcastle Mitochondrial Quality of life measure (NMQ)). NMQ is a valuable assessment tool and consists of 63 items within 16 unidimensional domains, each demonstrating good internal reliability (Cronbach’s α ⩾ 0.83) and construct validity.