Stability of health-related quality of life and morbidity burden from 18 months after diagnosis of prostate cancer: results of a UK-wide population-based outcome cohort.

OBJECTIVE: To evaluate the dynamic nature of self-reported health-related quality of life (HRQL) and morbidity burden in men diagnosed with prostate cancer, we performed a follow-up study of the Life After Prostate Cancer Diagnosis (LAPCD) study cohort 12 months after initial survey. METHODS: The LAPCD study collected information from 35,823 men across the UK who were 18-42 months post-diagnosis of prostate cancer. Men who were still alive 12 months later were resurveyed. Generic HRQL (EQ-5D-5L plus self-assessed health rating) and prostate cancer-specific outcomes (EPIC-26) were assessed. Treatment(s) received was self-reported. Previously defined clinically meaningful differences were used to evaluate changes in outcomes over time. RESULTS: A total of 28,450 men across all disease stages completed follow-up surveys (85.8% response). Of the 21,700 included in this study, 89.7% reported no additional treatments since the first survey. This group experienced stable urinary and bowel outcomes, with good function for most men at both time points. On-going poor (but stable) urinary issues were associated with previous surgery. Sexual function scores remained low (mean: 26.8/100). Self-assessed health ratings were stable over time. The largest declines in HRQL and functional outcomes were experienced by men reporting their first active treatment between surveys. DISCUSSION: The results suggest stability of HRQL and most specific morbidities by 18-42 months for men who report no further treatment in the subsequent 12 months. This is reassuring for those with good function and HRQL but re-enforces the need for early intervention and support for men who experience poor outcomes.

Influence of deprivation and rurality on patient-reported outcomes of men living with and beyond prostate cancer diagnosis in the UK: A population-based study.

BACKGROUND: In the UK, inequalities exist in prostate cancer incidence, survival and treatment by area deprivation and rurality. This work aimed to identify variation in patient-reported outcomes of men with prostate cancer by area type. METHODS: A population-based survey of men 18-42 months after prostate cancer diagnosis (N = 35608) measured self-assessed health (SAH) using the EQ-5D and five functional domains using the Expanded Prostate Cancer Index Composite (EPIC-26). RESULTS: Mean SAH was higher for men in least deprived areas compared to most deprived (difference 6.3 (95 %CI 5.6-7.2)). SAH scores were lower for men in most urban areas compared to most rural (difference 2.4 (95 %CI 1.8-3.0)). Equivalent estimates in the general population reported a 13 point difference by deprivation and a 4 point difference by rurality. For each EPIC-26 domain, functional outcomes were better for men in the least deprived areas, with clinically meaningful differences observed for urinary incontinence and hormonal function. There were no clinically meaningful differences in EPIC-26 outcomes by rurality with less than a three point difference in scores for each domain between urban and rural areas. CONCLUSION: In men 18-42 months post diagnosis of prostate cancer in the UK, impacts of area deprivation and rurality on self-assessed health related quality of life were not greater than would be expected in the general population. However, clinically meaningful differences were identified for some prostate functional outcomes (urinary and hormonal function) by deprivation. No impact by rurality of residence was identified.

Measurement properties of EQ-5D-3L and EQ-5D-5L in recording self-reported health status in older patients with substantial multimorbidity and polypharmacy.

BACKGROUND: The EQ-5D-3L and EQ-5D-5L are two generic health-related quality of life measures, which may be used in clinical and health economic research. They measure impairment in 5 aspects of health: mobility, self-care, usual activities, pain/discomfort and anxiety/depression. The aim of this study was to assess the performance of the EQ-5D-3L and EQ-5D-5L in measuring the self-reported health status of older patients with substantial multimorbidity and associated polypharmacy. METHODS: Between 2017 and 2019, we administered EQ-5D-3L and EQ-5D-5L to a subset of patients participating in the OPERAM trial at 6 months and 12 months after enrolment. The OPERAM trial is a two-arm multinational cluster randomised controlled trial of structured medication review assisted by a software-based decision support system versus usual pharmaceutical care, for older people (aged ≥ 70 years) with multimorbidity and polypharmacy. In the psychometric analyses, we only included participants who completed the measures in full at 6 and 12 months. We assessed whether responses to the measures were consistent by assessing the proportion of EQ-5D-5L responses, which were 2 or more levels away from that person's EQ-5D-3L response. We also compared the measures in terms of informativity, and discriminant validity and responsiveness relative to the Barthel Index, which measures independence in activities of daily living. RESULTS: 224 patients (mean age of 77 years; 56% male) were included in the psychometric analyses. Ceiling effects reported with the EQ-5D-5L (22%) were lower than with the EQ-5D-3L (29%). For the mobility item, the EQ-5D-5L demonstrated better informativity (Shannon's evenness index score of 0.86) than the EQ-5D-3L (Shannon's evenness index score of 0.69). Both the 3L and 5L versions of EQ-5D demonstrated good performance in terms of discriminant validity, i.e. (out of all items of the EQ-5D-3L and EQ-5D-5L, the pain/discomfort and anxiety/depression items had the weakest correlation with the Barthel Index. Both the 3L and 5L versions of EQ-5D demonstrated good responsiveness to changes in the Barthel Index. CONCLUSION: Both EQ-5D-3L and EQ-5D-5L demonstrated validity and responsiveness when administered to older adults with substantial multimorbidity and polypharmacy who were able to complete the measures.

Decision regret in men living with and beyond nonmetastatic prostate cancer in the United Kingdom: A population-based patient-reported outcome study.

OBJECTIVE: Clinical options for managing nonmetastatic prostate cancer (PCa) vary. Each option has side effects associated with it, leading to difficulty in decision-making. This study aimed to assess the relationship between patient involvement in treatment decision-making and subsequent decision regret (DR), and quantify the impact of health-related quality of life (HRQL) outcomes on DR. METHODS: Men living in the United Kingdom, 18 to 42 months after diagnosis of PCa, were identified from cancer registration data and sent a questionnaire. Measures included the Decision Regret Scale (DRS), Expanded Prostate cancer Index Composite short form (EPIC-26), EQ-5D-5L, and an item on involvement in treatment decision-making. Multivariable ordinal regression was utilized, with DR categorized as none, mild, or moderate/severe regret. RESULTS: A total of 17 193 men with stage I-III PCa completed the DRS: 36.6% reported no regret, 43.3% mild regret, and 20.0% moderate/severe regret. The odds of reporting DR were greater if men indicated their views were not taken into account odds ratio ([OR] = 6.42, 95% CI: 5.39-7.64) or were involved "to some extent" in decision-making (OR = 4.63, 95% CI: 4.27-5.02), compared with men who were "definitely" involved. After adjustment, including for involvement, men reporting moderate/big problems with urinary, bowel, or sexual function were more likely to experience regret compared with men with no/small problems. Better HRQL scores were associated with lower levels of DR. CONCLUSIONS: This large-scale study demonstrates the benefit of patient involvement in treatment decision-making for nonmetastatic PCa. However, men experiencing side effects and poorer HRQL report greater DR. Promoting engagement in clinical decision-making represents good practice and may reduce the risk of subsequent regret.

Regional Variations in Quality of Survival Among Men with Prostate Cancer Across the United Kingdom.

BACKGROUND: Prostate cancer incidence, treatment, and survival rates vary throughout the UK, but little is known about regional differences in quality of survival. OBJECTIVE: To investigate variations in patient-reported outcomes between UK countries and English Cancer Alliances. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional postal survey of prostate cancer survivors diagnosed 18-42mo previously. OUTCOME MEASUREMENTS AND STATISTICAL ANALYSIS: Urinary, bowel, and sexual problems and vitality were patient reported using the Expanded Prostate Cancer Index Composite (EPIC-26) questionnaire. General health was also self-assessed. Regional variations were identified using multivariable log-linear regression. RESULTS AND LIMITATIONS: A total of 35823 men responded, 60.8% of those invited. Self-assessed health was significantly lower than the UK average in Wales and Scotland. Respondents reported more urinary incontinence in Scotland, more urinary irritation/obstruction in Scotland and Northern Ireland (NI), poorer bowel function in Scotland and NI, worse sexual function in Scotland, and reduced vitality/hormonal function in Scotland, Wales, and NI. Self-assessed health was poorer than the English average in South Yorkshire and North-East and Cumbria, with more urinary incontinence in North-East and Cumbria and Peninsula, greater sexual problems in West Midlands, and poorer vitality in North-East and Cumbria and West Midlands. Limitations include difficulty identifying clinically significant differences and limited information on pretreatment conditions. CONCLUSIONS: Despite adjustment for treatment, and clinical and sociodemographic factors, quality of survival among prostate cancer survivors varied by area of residence. Adoption of best practice from areas performing well could support enhanced survival quality in poorer performing areas, particularly with regard to bowel problems and vitality, where clinically relevant differences were reported. PATIENT SUMMARY: We conducted a UK-wide survey of patient's quality of life after treatment for prostate cancer. Outcomes were found to vary depending upon where patients live. Different service providers need to ensure that all prostate cancer patients receive the same follow-up care.

Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study.

BACKGROUND: Little is known about the health-related quality of life (HRQOL) of men living with advanced prostate cancer. We report population-wide functional outcomes and HRQOL in men with all stages of prostate cancer and identify implications for health-care delivery. METHODS: For this population-based study, men in the UK living 18-42 months after diagnosis of prostate cancer were identified through cancer registration data. A postal survey was administered, which contained validated measures to assess functional outcomes (urinary incontinence, urinary irritation and obstruction, bowel, sexual, and vitality and hormonal function), measured with the Expanded Prostate Cancer Index Composite short form (EPIC-26), plus questions about use of interventions for sexual dysfunction) and generic HRQOL (assessed with the 5-level EuroQol five dimensions questionnaire [EQ-5D-5L] measuring mobility, self-care, usual activities, pain or discomfort, and anxiety or depression, plus a rating of self-assessed health). Log-linear and binary logistic regression models were used to compare functional outcomes and HRQOL across diagnostic stages and self-reported treatment groups. Each model included adjustment for age, socioeconomic deprivation, and number of other long-term conditions. FINDINGS: 35 823 (60·8%) of 58 930 men responded to the survey. Disease stage was known for 30 733 (85·8%) of 35 823 men; 19 599 (63·8%) had stage I or II, 7209 (23·4%) stage III, and 3925 (12·8%) stage IV disease. Mean adjusted EPIC-26 domain scores were high, indicating good function, except for sexual function, for which scores were much lower. Compared with men who did not receive androgen deprivation therapy, more men who received the therapy reported moderate to big problems with hot flushes (30·7% [95% CI 29·8-31·6] vs 5·4% [5·0-5·8]), low energy (29·4% [95% CI 28·6-30·3] vs 14·7% [14·2-15·3]), and weight gain (22·5%, 21·7-23·3) vs 6·9% [6·5-7·3]). Poor sexual function was common (81·0%; 95% CI 80·6-81·5), regardless of stage, and more than half of men (n=18 782 [55·8%]) were not offered any intervention to help with this condition. Overall, self-assessed health was similar in men with stage I-III disease, and although slightly reduced in those with stage IV cancer, 23·5% of men with metastatic disease reported no problems on any EQ-5D dimension. INTERPRETATION: Men diagnosed with advanced disease do not report substantially different HRQOL outcomes to those diagnosed with localised disease, although considerable problems with hormonal function and fatigue are reported in men treated with androgen deprivation therapy. Sexual dysfunction is common and most men are not offered helpful intervention or support. Service improvements around sexual rehabilitation and measures to reduce the effects of androgen deprivation therapy are required. FUNDING: The Movember Foundation, in partnership with Prostate Cancer UK.

Measuring the Benefits of Healthcare: DALYs and QALYs - Does the Choice of Measure Matter? A Case Study of Two Preventive Interventions.

BACKGROUND: The measurement of health benefits is a key issue in health economic evaluations. There is very scarce empirical literature exploring the differences of using quality-adjusted life years (QALYs) or disability-adjusted life years (DALYs) as benefit metrics and their potential impact in decision-making. METHODS: Two previously published models delivering outputs in QALYs, were adapted to estimate DALYs: a Markov model for human papilloma virus (HPV) vaccination, and a pneumococcal vaccination deterministic model (PNEUMO). Argentina, Chile, and the United Kingdom studies were used, where local EQ-5D social value weights were available to provide local QALY weights. A primary study with descriptive vignettes was done (n = 73) to obtain EQ-5D data for all health states included in both models. Several scenario analyses were carried-out to evaluate the relative importance of using different metrics (DALYS or QALYs) to estimate health benefits on these economic evaluations. RESULTS: QALY gains were larger than DALYs avoided in all countries for HPV, leading to more favorable decisions using the former. With discounting and age-weighting - scenario with greatest differences in all countries - incremental DALYs avoided represented the 75%, 68%, and 43% of the QALYs gained in Argentina, Chile, and United Kingdom respectively. Differences using QALYs or DALYs were less consistent and sometimes in the opposite direction for PNEUMO. These differences, similar to other widely used assumptions, could directly influence decision-making using usual gross domestic products (GDPs) per capita per DALY or QALY thresholds. CONCLUSION: We did not find evidence that contradicts current practice of many researchers and decision-makers of using QALYs or DALYs interchangeably. Differences attributed to the choice of metric could influence final decisions, but similarly to other frequently used assumptions.

Urinary, bowel and sexual health in older men from Northern Ireland.

OBJECTIVES: To provide data on the prevalence of urinary, bowel and sexual dysfunction in Northern Ireland (NI), to act as a baseline for studies of prostate cancer outcomes and to aid service provision within the general population. SUBJECTS AND METHODS: A cross-sectional postal survey of 10 000 men aged ≥40 years in NI was conducted and age-matched to the distribution of men living with prostate cancer. The EuroQoL five Dimensions five Levels (EQ-5D-5L) and 26-item Expanded Prostate Cancer Composite (EPIC-26) instruments were used to enable comparisons with prostate cancer outcome studies. Whilst representative of the prostate cancer survivor population, the age-distribution of the sample differs from the general population, thus data were generalised to the NI population by excluding those aged 40-59 years and applying survey weights. Results are presented as proportions reporting problems along with mean composite scores, with differences by respondent characteristics assessed using chi-squared tests, analysis of variance, and multivariable log-linear regression. RESULTS: Amongst men aged ≥60 years, 32.8% reported sexual dysfunction, 9.3% urinary dysfunction, and 6.5% bowel dysfunction. In all, 38.1% reported at least one problem and 2.1% all three. Worse outcome was associated with increasing number of long-term conditions, low physical activity, and higher body mass index (BMI). Urinary incontinence, urinary irritation/obstruction, and sexual dysfunction increased with age; whilst urinary incontinence, bowel, and sexual dysfunction were more common among the unemployed. CONCLUSION: These data provide an insight into sensitive issues seldom reported by elderly men, which result in poor general health, but could be addressed given adequate service provision. The relationship between these problems, raised BMI and low physical activity offers the prospect of additional health gain by addressing public health issues such as obesity. The results provide essential contemporary population data against which outcomes for those living with prostate cancer can be compared. They will facilitate greater understanding of the true impact of specific treatments such as surgical interventions, pelvic radiation or androgen-deprivation therapy.

Calidad de vida relacionada con salud en la población Colombiana: ¿cómo valoran los colombianos su estado de salud? / Quality of life related to health in the Colombian population: how do Colombians perceive their health condition?

RESUMEN Objetivo Determinar la percepción sobre la calidad de vida relacionada con salud (CVrS) que tiene la población adulta en Colombia. Métodos Encuesta poblacional en una muestra representativa de la población rural y urbana, de 18 y más años. Se midió la CVrS con el instrumento EQ5D-3L y la escala visual análoga, como parte de la cuarta Encuesta Nacional de Salud Mental. Las estimaciones fueron ajustadas por el diseño de muestreo y se acompañan de intervalos de confianza al 95 %. Resultados 1 0867 personas completaron la medición; 69,7 % (IC95 % 66,9 a 68,9) de la población reporto estar en "salud completa"; la mayor proporción de personas valoraron su salud por encima de 80 puntos. La presencia de "moderado dolor o malestar", seguida de estar "moderadamente angustiado o deprimido" fueron las alteraciones más frecuentes. Los adultos jóvenes tienden a valorar mejor su salud que los adultos mayores. No hay diferencias en la percepción de la salud entre regiones del país. Conclusiones La calidad de vida relacionada con salud en la población colombiana es mayor de 80 puntos en una escala de 1 a 100. Las alteraciones como angustia y depresión y la percepción del dolor, fueron las más comúnmente reportadas por los colombianos. La situación de pobreza y el bajo nivel educacional son determinantes de la valoración que hacen los colombianos de su CVrS.(AU)

ABSTRACT Objective To determine the perception about quality of life related to health in the adult population of Colombia. Methods Population-based survey applied on a representative sample of the Colombian rural and urban population, aged 18 years or more. Quality of life related to health was measured using the generic EQ5D instrument and the analogue visual scale as part of the fourth National Mental Health Survey. Estimates were accompanied by 95 % confidence intervals and were adjusted by the sampling design. Results 10 867 people aged 18 years or older completed the measurement. 69.7 % (CI95 %; 66.9-68.9) of the population reported being "completely healthy". Most of the population rated their health condition above 80 points. The presence of "moderate pain or discomfort", followed by being "moderately distressed or depressed" were the most frequent alterations. Young adults tend to perceive their health better than older adults. There is no difference in the perception of health between regions of the country. Conclusions Quality of life related to health in the Colombian population is greater than 80 points on a scale of 1 to 100. Alterations such as angst and depression and the perception of pain were the most frequently reported by Colombians. Poverty and a low level of education are determinants of the perception of Colombians regarding their quality of life related to health.(AU)

Life after prostate cancer diagnosis: protocol for a UK-wide patient-reported outcomes study.

BACKGROUND: Prostate cancer and its treatment may impact physically, psychologically and socially; affecting the health-related quality of life of men and their partners/spouses. The Life After Prostate Cancer Diagnosis (LAPCD) study is a UK-wide patient-reported outcomes study which will generate information to improve the health and well-being of men with prostate cancer. METHODS AND ANALYSIS: Postal surveys will be sent to prostate cancer survivors (18-42 months postdiagnosis) in all 4 UK countries (n=∼70 000). Eligible men will be identified and/or verified through cancer registration systems. Men will be surveyed twice, 12 months apart, to explore changes in outcomes over time. Second, separate cohorts will be surveyed once and the design will include evaluation of the acceptability of online survey tools. A comprehensive patient-reported outcome measure has been developed using generic and specific instruments with proven psychometric properties and relevance in national and international studies. The outcome data will be linked with administrative health data (eg, treatment information from hospital data). To ensure detailed understanding of issues of importance, qualitative interviews will be undertaken with a sample of men who complete the survey across the UK (n=∼150) along with a small number of partners/spouses (n=∼30). ETHICS AND DISSEMINATION: The study has received the following approvals: Newcastle and North Tyneside 1 Research Ethics Committee (15/NE/0036), Health Research Authority Confidentiality Advisory Group (15/CAG/0110), NHS Scotland Public Benefit and Privacy Panel (0516-0364), Office of Research Ethics Northern Ireland (16/NI/0073) and NHS R&D approval from Wales, Scotland and Northern Ireland. Using traditional and innovative methods, the results will be made available to men and their partners/spouses, the funders, the NHS, social care, voluntary sector organisations and other researchers.

Health-related quality of life after colorectal cancer in England: a patient-reported outcomes study of individuals 12 to 36 months after diagnosis.

PURPOSE: This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. PATIENTS AND METHODS: All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). RESULTS: The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). CONCLUSION: This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

What matters most?: evidence-based findings of health dimensions affecting the societal preferences for EQ-5D health states / O que importa mais?: evidências empíricas das dimensões que afetam as preferências sociais para estados de saúde do EQ-5D / ¿Qué es lo que más importa?: evidencias empíricas sobre las dimensiones que afectan a las preferencias sociales por los estados de salud en EQ-5D

This study analyzes how different health dimensions defined by the EQ-5D-3L instrument affect average individual preferences for health states. This analysis is an important benchmark for the incorporation of health technologies as it takes into consideration Brazilian population preferences in health resource allocation decisions. The EQ-5D instrument defines health in terms of five dimensions (mobility, daily activities, self-care activities, pain/discomfort, and anxiety/depression) each divided into three levels of severity. Data came from a valuation study with 3,362 literate individuals aged between 18 and 64 living in urban areas of Minas Gerais State, Brazil. The main results reveal that health utility decreases as the level of severity increases. With regard to health issues, mobility stands out as the most important EQ-5D dimension. Independently of severity levels of the other EQ-5D-3L dimensions, the highest decrements in utilities are associated with severe mobility problems.

Este estudo analisa como as diferentes dimensões dos estados de saúde definidas pelo instrumento EQ-5D-3L afetam, em média, as preferências dos indivíduos por estados de saúde. Essa análise é importante para balizar a incorporação de tecnologias em saúde uma vez que viabiliza considerar as preferências da população brasileira na decisão de alocação de recursos em saúde. O EQ-5D-3L define a saúde em cinco dimensões (mobilidade, atividades habituais, auto-cuidado, dor/desconforto e ansiedade/depressão) contendo três níveis de severidade. Os dados são provenientes de uma pesquisa inédita no Brasil que entrevistou 3.362 pessoas com idade entre 18 e 64 anos vivendo em áreas urbanas de Minas Gerais. Os principais resultados mostram que o decremento na utilidade dos indivíduos é crescente com o nível de severidade. No que se refere às dimensões de saúde, a mobilidade se destaca como a mais importante. Independentemente dos níveis de severidade das demais dimensões do EQ-5D, os maiores decrementos nas utilidades estão associados ao problema de mobilidade severa.

Este estudio analiza cómo las diferentes dimensiones de la salud, definidas por el instrumento EQ-5D-3L, afectan, en promedio, las preferencias individuales por los estados de salud. Este análisis es un punto de referencia para la incorporación de tecnologías en salud, ya que hace posible considerar las preferencias de la población brasileña en las decisiones sobre la asignación de recursos de salud. El EQ-5D define la salud en cinco dimensiones (movilidad, actividades habituales, cuidado personal, dolor/malestar y ansiedad/depresión) con tres niveles de severidad. Los datos provienen de una investigación inédita en Brasil, que entrevistó a 3.362 personas entre 18 y 64 años y que viven en zonas urbanas de Minas Gerais. Los principales resultados muestran que la disminución en la utilidad de los individuos aumenta con el nivel de severidad. Con respecto a las dimensiones de salud, la movilidad se destaca como la más importante. Independientemente de los niveles de severidad de las otras dimensiones, los mayores decrementos en la utilidad están asociados con graves problemas de movilidad.

Estimation and comparison of EQ-5D health states' utility weights for pneumococcal and human papillomavirus diseases in Argentina, Chile, and the United Kingdom.

OBJECTIVES: To estimate and compare EuroQol instrument (EQ-5D) health states' values for pneumococcal and human papillomavirus (HPV) diseases in Argentina, Chile, and the United Kingdom. METHODS: Twelve vignettes were designed, pilot-tested, and administered to a convenience sample in a cross-sectional design to elicit descriptive EQ-5D state data. Country-specific EQ-5D time-trade-off-based weights were used to map these descriptive health states into local country preference weights. Descriptive analysis is reported and intercountry differences for each condition were compared using repeated measures analysis of variance. RESULTS: Seventy-three subjects completed the survey. Pneumococcal disease-related health states mean values ranged from -0.331 (sepsis, Chile) to 0.727 (auditive sequelae, Argentina). HPV-related conditions ranged from 0.152 (cervical cancer, United Kingdom) to 0.848 (cervical intraepithelial neoplasia 1, Argentina). Chile had consistently the lowest mean values in pneumococcal states and in one HPV state, whereas those of the United Kingdom were the lowest in most HPV states. Argentina had the highest mean values in both diseases. Differences in country-specific values for each health state were statistically (P < 0.001) significant except for six health states in which differences between Chilean and United Kingdom weights were nonsignificant. CONCLUSIONS: Utility values for most conditions differed statistically relevantly among analyzed countries, even though the same health states' descriptive set was valued for each. These results reflect the difference in social weights among different countries, which could be attributed to either different population values or valuation study methodologies. They stress the importance of using local preference weights for context-specific decision making.

Regional differences in health status in China: population health-related quality of life results from the National Health Services Survey 2008.

PURPOSE: To measure, describe and analyse regional differences in health-related quality of life measured by EQ-5D in China. Data were obtained via face-to-face interviews on a national representative sample (n=120,703, 15-103 years). The EQ-5D instrument was used to measure health status. RESULTS: Rural areas had worse health status than urban areas. Health status was worst in western areas and best in eastern areas, and such disparities were profounder in rural areas. In urban areas, health status was best in middle-sized cities. In rural areas, health status increased with the economic development level of a county. CONCLUSION: Our study enhances understanding of the urban-rural differences and east-middle-west differences in health and sheds light on inequalities in health status between different city categories in the urban areas and county categories in the rural areas.

Population health status in China: EQ-5D results, by age, sex and socio-economic status, from the National Health Services Survey 2008.

PURPOSE: To measure and analyse national EQ-5D data and to provide norms for the Chinese general population by age, sex, educational level, income and employment status. METHODS: The EQ-5D instrument was included in the National Health Services Survey 2008 (n = 120,703) to measure health-related quality of life (HRQoL). All descriptive analyses by socio-economic status (educational level, income and employment status) and by clinical characteristics (discomfort during the past 2 weeks, diagnosed with chronic diseases during the past 6 months and hospitalised during the past 12 months) were stratified by sex and age group. RESULTS: Health status declines with advancing age, and women reported worse health status than men, which is in line with EQ-5D population health studies in other countries and previous population health studies in China. The EQ-5D instrument distinguished well for the known groups: positive association between socio-economic status and HRQoL was observed among the Chinese population. Persons with clinical characteristics had worse HRQoL than those without. CONCLUSIONS: This study provides Chinese population HRQoL data measured by the EQ-5D instrument, based on a national representative sample. The main findings for different subgroups are consistent with results from EQ-5D population studies in other countries, and discriminative validity was supported.

Long-term quality of life in trauma patients following the full spectrum of tibial injury (fasciotomy, closed fracture, grade IIIB/IIIC open fracture and amputation).

AIMS AND OBJECTIVES: To measure long-term functional outcome and health-related quality of life following tibial fracture in association with the full spectrum of soft tissue injury. METHODS: One hundred and thirty patients with different types of tibial injury were selected from our trauma database. This included 33 patients with compartment syndrome (no underlying fracture), 30 with closed diaphyseal tibial fractures, 45 with grade IIIB/IIIC open fractures and 22 requiring below knee amputation. Mean time to final follow-up was 37.4 months. The EQ-5D (EuroQol) questionnaire was used to assess these patients at this point. Patients had been treated according to standard unit protocols. Open fractures were jointly managed under the care of local plastic and orthopaedic surgeons using a policy of obtaining early soft tissue cover. RESULTS: Patients with reconstructed IIIB fractures reported problems with pain and carrying out their normal activities more frequently than amputees whilst still reporting problems with mobility just as frequently. Anxiety and depression were more common in the patients with open fractures and amputees as were problems with self-care, though the latter were unusual overall. Stepwise logistic regression revealed that tibial injury type was significantly predictive of all measured outcomes except self-care (p<0.0001). Age, ISS, sex and time to follow-up were not significant predictors of response. CONCLUSIONS: These results show that patients with these injuries still report long-term problems with their health-related quality of life, though to varying degrees. This information is useful when determining the treatment options for these patients and it is important that it is shared with the patient prior to surgery where possible.

Growth hormone (GH) replacement in hypopituitary adults with GH deficiency evaluated by a utility-weighted quality of life index: a precursor to cost-utility analysis.

OBJECTIVES: To examine quality of life (QoL) measured by a utility-weighted index in GH-deficient adults on GH replacement and analyse the impact of demographic and clinical characteristics on changes in utilities during treatment. DESIGN: Utilities for items in the QoL-Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA(utility)) were estimated based on data obtained from the general population in England and Wales (E&W). These estimates were used to calculate QoL changes in GH-treated patients and compare these with normative population values. PATIENTS: A total of 894 KIMS patients (53% women) from E&W were followed for 1 to 6 years. MEASUREMENTS: QoL-AGHDA(utility) at baseline and at the last reported visit, total QoL-AGHDA(utility) gain and QoL-AGHDA(utility) gain per year of follow-up. RESULTS: QoL-AGHDA(utility) in patients before GH treatment differed from the expected population values [0.67 (SD 0.174) vs. 0.85 (SD 0.038), P < 0.0001], constituting a mean deficit of -0.19 (SD 0.168). There was a difference in the mean QoL-AGHDA(utility) deficit for men [-0.16 (SD 0.170)] and women [-0.21 (SD 0.162)] (P < 0.001). The main improvement occurred during the first year of treatment [reduction of a deficit to -0.07 (SD 0.163) (P < 0.001) in the total cohort]; however, patients' utilities remained lower than those recorded for the general population during subsequent follow-up (P < 0.001). Despite an observed impact of age, primary aetiology, disease onset and comorbidities on QoL-AGHDA(utility), all patients showed a similar beneficial response to treatment. CONCLUSIONS: QoL-AGHDA(utility) efficiently monitors treatment effects in patients with GHD. The study confirmed the QoL-AGHDA(utility) deficit before treatment and a similar QoL-AGHDA(utility) gain observed after commencement of GH replacement in all patients.

Does long-term GH replacement therapy in hypopituitary adults with GH deficiency normalise quality of life?

OBJECTIVE: To determine whether impaired quality of life (QoL) in adults with GH deficiency (GHD) is reversible with long-term GH therapy and whether the responses in QoL dimensions differ from each other. METHODS: QoL was measured by the Quality of Life-Assessment for Growth Hormone Deficiency in Adults (QoL-AGHDA) in general population samples in England & Wales, The Netherlands, Spain and Sweden (n = 892, 1038, 868 and 1682 respectively) and compared with corresponding patients' data from KIMS (Pfizer International Metabolic Database) (n = 758, 247, 197 and 484 respectively) for 4-6 years a follow-up. The subsets of patients from England and Wales, and Sweden with longitudinal data for 5 years' follow-up were also analysed. The change of the total QoL-AGHDA scores and responses within dimensions were evaluated. Subanalyses were performed to identify any specificity in response pattern for gender, age, disease-onset and aetiology. RESULTS: Irrespective of the degree of impairment, overall QoL improved dramatically in the first 12 months, with steady progress thereafter towards the country-specific population mean. Problems with memory and tiredness were the most serious burden for untreated patients, followed by tenseness, self-confidence and problems with socialising. With treatment, these improved in the reverse order, normalising for the latter three. CONCLUSIONS: Long-term GH replacement results in sustained improvements towards the normative country-specific values in overall QoL and in most impaired dimensions. The lasting improvement and almost identical pattern of response in each patient subgroup and independent of the level of QoL impairment support the hypothesis that GHD may cause these patients' psychological problems.

Eliciting social preference weights for Functional Assessment of Cancer Therapy-Lung health states.

BACKGROUND: The Functional Assessment of Cancer Therapy-Lung (FACT-L) is a multidimensional measure of quality of life developed for use in the evaluation of interventions in lung cancer. OBJECTIVE: To develop a set of utility weights that could be used to convert FACT-L into a single index capable of being used in the economic analysis of clinical trial data. METHOD: A core set of FACT-L items were valued in two versions of a 14-page postal survey of over 400 members of the UK general population. Respondents valued hypothetical FACT-L health states using a scale from 0 to 100 (worst to best health state). Respondents also valued their own health using the standard form of the EuroQol EQ-5D. Data were entered into an ordinary least squares regression model. RESULTS: Item weights estimated in regression analysis yielded values for 10 items from the FACT-L. The summary index based on this selected set of FACT-L items has a maximum value of 0.703 and a minimum value of 0.111. CONCLUSION: This study demonstrates a practical method of converting a standard condition-specific measure into a form that has the requisite properties to legitimise its use in cost-utility analysis. The methodology used here is not unique to FACT-L and might be considered appropriate for use in converting similar instruments.

Quality of life assessment of growth hormone deficiency in adults (QoL-AGHDA): comparison of normative reference data for the general population of England and Wales with results for adult hypopituitary patients with growth hormone deficiency.

BACKGROUND/AIM: Age- and gender-specific reference values for the quality of life (QoL) measures used in assessing the impact of growth hormone deficiency (GHD) are important. The objective of this study was to develop such data for the QoL-AGHDA instrument for the population of England and Wales and to demonstrate the QoL deficit in patients with GHD. METHODS: For the purpose of this study, a questionnaire was developed that contained the EurQoL EQ-5D, QoL-AGHDA, questions recording an individual's general situation and social functioning, and a self-reported five-point rating scale of general health. The questionnaire was mailed out to a sample of 1,190 individuals drawn from the general population of England and Wales. Corresponding data for 836 patients were retrieved from KIMS (Pfizer International Metabolic Database). The postal survey data were weighted to ensure that they were representative of the general population. RESULTS: The mean weighted QoL-AGHDA scores for the general population were 6.2 and 7.1 for men and women, respectively, compared with 13.6 and 15.7 for patients. For both males and females the differences in mean QoL-AGHDA scores between the general population and patients were statistically significant for all age categories (p < 0.01). In the general population the mean QoL-AGHDA score for each category of self-assessed health status increased progressively, indicating a poorer QoL as health status declined. CONCLUSIONS: This study reports QoL-AGHDA normative values for the population of England and Wales and confirms the extent of QoL impairment in patients with GHD in comparison with the general population.