The health-related quality of life of Indigenous populations: a global systematic review.

PURPOSE: Indigenous conceptions of health have been shown to differ from that of their non-Indigenous counterparts. As a result, there remains uncertainty over the appropriateness and value of using existing health-related quality-of-life (HRQoL) instruments in Indigenous communities. The objective of this review was to identify studies that either measure the HRQoL of an Indigenous population or validated a measure used to elicit the HRQoL in an Indigenous population. METHODS: A systematic review of the published literature was conducted to (1) investigate the extent to which HRQoL instruments are used in Indigenous populations; (2) to identify which instruments have been validated in which populations; and (3) to identify which instruments have been tailored for use with Indigenous populations. RESULTS: Forty-one studies were included in the review. Only three of the 41 studies utilised Indigenous-specific instruments. The remainder (38 studies) utilised generic population or disease-specific instruments. Four studies found specific HRQoL instruments to be valid in these populations and 32 estimated the HRQoL of an Indigenous population. The limited examples of Indigenous-specific instruments highlighted the potential importance to the HRQoL of these populations of domains that lie outside of traditional measures including social and community domains as well as domains relating to culture, diet and land use on top of more traditional HRQoL domains. CONCLUSION: Ensuring that the HRQoL of Indigenous populations is being appropriately measured is vital to prioritising available resources to the most effective interventions. HRQoL instruments present an opportunity to directly elicit and incorporate Indigenous preferences and conceptions of health into these decisions. Further work is required in the field to ensure that this potential is realised.

Measuring health-related quality of life with the EQ-5D-Y instrument in children and adolescents with asthma.

AIM: Asthma is one of the most common chronic paediatric diseases worldwide and affects different dimensions of health-related quality of life. This study tested the feasibility and convergent validity of using the EQ-5D-Y instrument on children and adolescents with asthma. METHODS: A cross-sectional design was chosen, and children with asthma, aged from 8 to 16 years, were recruited from clinics in Stockholm, Sweden. To test convergent validity, the EQ-5D-Y instrument was combined with the Paediatric Quality of Life Questionnaire. RESULTS: The EQ-5D-Y proved feasible as nearly 96% of the 94 respondents completed all items on the questionnaire. High and moderate correlations between the two instruments were found for the dimensions of 'doing usual activities' and 'activity limitations' and for 'having pain or discomfort' and 'symptoms'. The visual analogue scale of the ED-5D-Y correlated with the Paediatric Quality of Life Questionnaire total score and the self-rated health question. The dimensions on the EQ-5D-Y with most reported problems were 'usual activities', 'pain or discomfort' and 'worried, sad or unhappy'. CONCLUSION: The EQ-5D-Y instrument seemed to provide feasibility and convergent validity for measuring health-related quality of life in children and adolescents with asthma.

Valuing indigenous quality of life: A review of preference-based quality of life instruments and elicitation techniques with global older indigenous populations.

Indigenous perspectives of quality of life (QoL) are different to that of non-Indigenous populations. Determining how to identify and value what is important to QoL for people from diverse cultural backgrounds is crucial for assessing effective outcomes for quality assessment and health economic evaluation to guide evidence-based decision making. This is particularly important for older Indigenous people who have complex care and support needs within health and aged-care systems. This scoping review aims to assess the existing literature in this field by firstly identifying preference based instruments that have been applied with older Indigenous peoples and secondly, exploring the extent to which existing preference based instruments applied with older Indigenous peoples encompass older Indigenous peoples QoL perspectives in their design and application. The inclusion criteria for the review were studies using preference based QoL instruments with an Indigenous population where the cohort was aged 50 years or over. This resulted in the critical analysis of 12 studies. The review identified that preference based QoL instruments have rarely been applied to date with older Indigenous populations with most instruments found to be designed for non-Indigenous adults. Typically, instruments have not incorporated Indigenous worldviews of QoL into either the content of the descriptive system or the elicitation techniques and corresponding value sets generated. To encapsulate Indigenous cultural perspectives accurately in economic evaluation, further research is required as to how QoL domains in preference based instruments for Indigenous peoples can be reflective of Indigenous perspectives. It is imperative that the QoL preferences of older Indigenous peoples are adequately captured within preference based QoL instruments applied with this population.

Does it matter how we evaluate HRQOL? Longitudinal comparison of the EORTC QLQ-C30/QLQ-OG25 and FACT-E.

PURPOSE: To determine whether EORTC QLQ-C30/QLQ-OG25 and FACT-E compared longitudinally provide similar reflections of health-related quality of life (HRQOL). METHODS: Eighty-six esophageal cancer patients treated with curative intent, scheduled to complete both questionnaires at baseline and post-treatment time points until 36 months. A generalized estimating equation model utilizing a Gaussian family compared instruments longitudinally. The two-one-sided-test (TOST) method assessed equivalence between the instruments. RESULTS: Trajectories for social domain and overall quality of life differed significantly between instruments. Also, FACT-G's functional well-being post-treatment returns to baseline 3-6 months earlier than the EORTC QLQ-C30's role functioning subscale, suggesting measurement of different components. Trajectories for physical and esophageal symptom subscales are similar and are deemed equivalent. Emotional domains are comparable and bear little resemblance to the physical domain trajectories indicating reflection of emotional experience rather than a physical proxy. EORTC QLQ-C30 subscales have a trajectory similar to its physical functioning scale except for the emotional and esophageal symptoms scales. Overall HRQOL in both instruments showed a consistent return to baseline/pre-treatment levels by 6 months post-treatment. CONCLUSIONS: Overall HRQOL recovers earlier after curative-intent treatment than previously reported despite persistence of physical symptoms, with a consistent return to pre-treatment levels by 6 months after treatment. This supports the concept that HRQOL is not primarily defined by physical function. Based on this longitudinal comparison, FACT-E provides a more multidimensional assessment of HRQOL. IMPLICATIONS FOR CANCER SURVIVORS: Curative intent treatment for esophageal cancer has adverse effects on HRQOL but despite intense treatment, overall HRQOL recovers within 6 months.

Accounts from developers of generic health state utility instruments explain why they produce different QALYs: A qualitative study.

PURPOSE AND SETTING: Despite the label "generic" health state utility instruments (HSUIs), empirical evidence shows that different HSUIs generate different estimates of Health-Related Quality of Life (HRQoL) in the same person. Once a HSUI is used to generate a QALY, the difference between HSUIs is often ignored, and decision-makers act as if 'a QALY is a QALY is a QALY'. Complementing evidence that different generic HSUIs produce different empirical values, this study addresses an important gap by exploring how HSUIs differ, and processes that produced this difference. 15 developers of six generic HSUIs used for estimating the QOL component of QALYs: Quality of Well-Being (QWB) scale; 15 Dimension instrument (15D); Health Utilities Index (HUI); EuroQol EQ-5D; Short Form-6 Dimension (SF-6D), and the Assessment of Quality of Life (AQoL) were interviewed in 2012-2013. PRINCIPAL FINDINGS: We identified key factors involved in shaping each instrument, and the rationale for similarities and differences across measures. While HSUIs have a common purpose, they are distinctly discrete constructs. Developers recalled complex developmental processes, grounded in unique histories, and these backgrounds help to explain different pathways taken at key decision points during the HSUI development. The basis for the HSUIs was commonly not equivalent conceptually: differently valued concepts and goals drove instrument design and development, according to each HSUI's defined purpose. Developers drew from different sources of knowledge to develop their measure depending on their conceptualisation of HRQoL. MAJOR CONCLUSIONS/CONTRIBUTION TO KNOWLEDGE: We generated and analysed first-hand accounts of the development of the HSUIs to provide insight, beyond face value, about how and why such instruments differ. Findings enhance our understanding of why the six instruments developed the way they did, from the perspective of key developers of those instruments. Importantly, we provide additional, original explanation for why a QALY is not a QALY is not a QALY.

A review of self-rated generic quality of life instruments used among older patients receiving home care nursing.

In the last two decades, quality of life and health-related quality of life have become commonly used outcome measures in the large number of studies evaluating healthcare and home care nursing. The objective of this systematic search and review was to evaluate studies that include self-rated generic quality of life instrument used among elderly patients receiving home care nursing. Searches were conducted in Medline, Embase, PsycINFO and Cinahl for articles published between January 2005 and June 2016, with 17 studies in eight countries meeting the inclusion criteria and assessed for quality. Overall, the review shows great variations in the included studies regarding characteristics of the participants and place of origin, the generic quality of life instruments applied and their dimensions. In this review, we raise the question of whether the generic questionnaires used to measure quality of life do in fact measure what is essential for quality of life in elderly users of home care nursing. The psychological and physical dimensions of quality of life were assessed in almost all included studies, while older-specific dimensions like autonomy, control and sensation were less frequently assessed. There is reason to believe that generic quality of life instruments frequently do not capture the dimensions that are most important for elderly people with health problems in need of home care nursing.

Cross-cultural adaptation and validation of nasal obstruction symptom evaluation questionnaire in Slovenian language.

OBJECTIVES: Nasal obstruction is highly subjective perception with numerous efforts being made towards objective measuring. Many instruments in quality of life studies encompass subjective symptom of nasal obstruction, but only NOSE has been properly validated and is easy to use in every day practice. METHODS: Multicenter prospective instrument validation and cross-cultural adaptation cohort study was conducted on patients with deviated nasal septum, with or without inferior turbinate hypertrophy, to develop the Slovenian version of NOSE questionnaire. A cross-cultural adaptation of the original questionnaire was done in five steps, producing Slovenian NOSE-si, used on a pilot group to confirm the quality of adapted tools and, afterwards, on the main study and control group. Symptoms were lasting for more than 12 months and all had an indication for septal surgery. A control group was selected from a pool of healthy subjects, self-assessed as having no rhinological complaints. RESULTS: NOSE-si was used on 116 patients (58 from the study group vs. 58 from the control group). High degree of internal consistency - Cronbach's a 0.971 and reliability after retesting - Goodman-Kruskal gamma coefficient 0.984 was proven. Responsiveness was confirmed in the surgery subgroup with standardized response mean (SRM) 2.76 (p<0.001). CONCLUSIONS: The study produced a valid Slovenian version of NOSE questionnaire through rigorous and well defined five-phase effort to maintain scientifically comparable QoL instrument, and may be used by clinicians and researchers.

[Study of disease burden of chronic hepatitis B and C patients in Shanghai based on Bronfenbrenner' s ecological systems theory: a community-based survey].

Objective: To systemically analyze family burden, quality of life of chronic hepatitis B and C patients in Shanghai and related influencing factors. Methods: A representative sample of chronic hepatitis patients (n=1 478) and their family members (n=1 478) was randomly selected through a multi-stage cluster sampling from 30 communities in 10 districts of Shanghai. One patient and one family member of each family were interviewed using different questionnaires to collect related information. Based on Bronfenbrenner' s ecological systems, psychological measurement, two-level random intercept model and multivariable structural equation model were applied to determine the effects and directions of the factors between life quality of chronic hepatitis patients and family burden. Results: The mean score of quality of life of chronic hepatitis patients in Shanghai was 78.70 ± 13.25, the score of " specific module" was highest and the score of " social function" was lowest. Additionally, the mean score of burden reported by the family members was 12.62±10.74, the score of " financial burden" was highest, and the score of " effect on family member' s health" was lowest. Multivariable structural equation model indicated that eight factors were related with life quality and family burden of patients with chronic hepatitis. Among them, HCV infection, elevated serum alanine aminotransferase level, average monthly cost for patient >3 000 yuan (RMB) and poor health of family members were the direct risk factors for the life quality of the patients as well as family burden. The factor of drinking more than once a week influenced the patients' life quality directly and family burden indirectly. On the contrary, the factors of local household registration, hospitalization and family member's indifferent attitude to hepatitis B vaccination influenced the family burden of the chronic hepatitis patients directly and the life quality of the patients indirectly. Conclusion: The findings could be used in the development of community based management and intervention of chronic hepatitis patients in Shanghai.

Quality of life in end stage renal disease patients.

AIM: To understand factors associated with quality of life (QOL), examine types of QOL instruments, and determine need for further improvements in QOL assessment. METHODS: The method used databases (Pubmed, Google scholar) and a bibliographic search using key words QOL, end stage renal disease, Hemodialysis, Peritoneal dialysis, instruments to measure QOL, patients and qualitative/quantitative analysis published during 1990 to June 2014. Each article was assessed for sample size, demographics of participants, study design and type of QOL instruments used. We used WHO definition of QOL. RESULTS: For this review, 109 articles were screened, out of which 65 articles were selected. Out of 65 articles, there were 19 reports/reviews and 12 questionnaire manuals. Of the 34 studies, 82% were quantitative while only 18% were qualitative. QOL instruments measured several phenomenon such as physical/psychological health, effects and burdens of kidney disease, social support etc. those are associated with QOL. Few studies looked at spiritual beliefs, cultural beliefs, personal concerns, as per the WHO definition. Telemedicine and Palliative care have now been successfully used however QOL instruments seldom addressed those in the articles reviewed. Also noticed was that longitudinal studies were rarely conducted. Existing QOL instruments only partially measure QOL. This may limit validity of predictive power of QOL. CONCLUSION: Culture and disease specific QOL instruments that assess patients' objective and subjective experiences covering most aspects of QOL are urgently needed.

Resultados de la encuesta NEI-RQL-42 en pacientes con catarata operados mediante facoemulsificación más implante de lente trifocal / Results of the NEI-RQL-42 survey in patients with cataract operated by phacoemulsifi cation and trifocal lens implant

Introducción: se encuentra reportado que a pesar de obtenerse buenos resultados de agudeza visual con los lentes multifocales, algunos pacientes no se encuentran a gusto con su visión; son pocos los artículos que describen de manera objetiva la satisfacción de los pacientes después del implante de éste tipo de lentes. Objetivo: describir los resultados de la encuesta NEI-RQL-42 en pacientes que han sido operados mediante facoemulsificación e implante de lente trifocal FineVision en ambos ojos. Diseño del estudio: estudio descriptivo de corte transversal. Método: se incluyeron pacientes operados de catarata e implante de lente trifocal FineVision en ambos ojos. Todos los pacientes fueron evaluados con Pentacam prequirúrgico y cumplieron con los criterios descritos por el doctor Maeda. Posteriormente se les aplicó la encuesta NEI-RQL-42 y se realizó una comparación de medias y proporciones, utilizando el programa SPSS, versión 19. Resultados: Los puntajes promedio para cada una de las categorías de la encuesta NEI-RQL-42 son los siguientes: "Claridad de visión": 93,75, "Expectativas": 75, "Visión cercana": 92,81, "Visión lejana": 94,83, "Fluctuaciones diurnas": 81,87, "Limitación de actividades": 95,1, "Glare/deslumbramiento": 68,75, "Síntomas": 73,56, "Dependencia de la corrección": 99,58, "Preocupación": 45, "Corrección subóptima": 100, "Apariencia": 92 y "Satisfacción con la corrección": 93. Conclusión: los 20 pacientes obtuvieron un buen puntaje en la mayoría de las categorías de la encuesta. Tener en cuenta los criterios descritos por el doctor Maeda podrían mejorar los resultados de la cirugía de catarata y facilitar la decisión del tipo de lente a implantar en cada paciente.

Background: it is reported that despite obtaining good visual results with multifocal lenses, some patients are not comfortable with their vision; There are few articles that objectively describe the satisfaction of patients after the implantation of this type of lens. Objective: To describe the results of the NEI-RQL-42 survey in patients who underwent cataract surgery with phacoemulsification and implant of a trifocal lens (FineVision) in both eyes. Study Design: Descriptive, cross-sectional study. Method: We included patients who underwent cataract surgery and a trifocal lens implant in both eyes (FineVision). All patients were evaluated with Pentacam before the surgery to ensure compliance with the criteria described by Dr. Maeda. Subsequently, the NEI-RQL-42 survey was completed and a comparison of means and proportions was made using the SPSS program version 19. Results: The average score for each category of the NEI-RQL-42 survey were the following: "Clarity of vision": 93.75, "Expectations": 75, "Near vision": 92.81, "Far vision": 94.83, "Diurnal fl uctuations": 81.87, "Activity limitations": 95.1, "Glare": 68.75, "Symptoms": 73.56, "Dependence on correction": 99.58, "Worry": 45, "Suboptimal correction": 100, "Appearance": 92 and "Satisfaction with correction": 93. Conclusion: The 20 patients interviewed obtained good results in most of the categories of the NEI-RQL-42 survey. Following the criteria described by Dr. Maeda could improve the results of cataract surgery and could facilitate the decision about the type of lens to implant in each patient.

Challenges in measuring outcomes following digital replantation.

In the early period of replantation surgery, the emphasis was on digit survival. Subsequently, with better microsurgical techniques and instrumentation, the focus has shifted to function and in recent years to consideration of cost-effectiveness. Despite over 40 years of effort in refining digital replantation surgery, a rigorous evaluation of the outcomes of digital replantation has not been performed. This is because of the many confounding variables that influence outcome comparisons. These variables include the mechanism of injury (guillotine, crush, avulsion), the injury itself (total, near total, subtotal, partial amputation), and the surgical procedure (replantation, revascularization). In addition, the traditional outcome measures (two-point discrimination, range of motion, grip strength, or the ability to return to work) are reported inconsistently and vary widely among publications. All these factors make meaningful comparison of outcomes difficult. The recent emphasis on outcome research and cost-effectiveness necessitates a rethinking in the way we report outcomes of digital replantation. In this article, the authors summarize the challenges in assessing outcomes of digital replantation and explain the need to measure outcomes using rigorous clinical research designs that incorporate cost-effectiveness studies in the research protocol.

Calidad de vida relacionada con la salud infantil: una aproximación desde la enfermedad crónica / Health-related quality of life infantile: an approach from chronic illness

Resumen El propósito de este estudio es presentar una aproximación sobre el constructo calidad de vida relacionada con la salud infantil. Para esto se menciona el desarrollo histórico del concepto de calidad de vida hasta llegar al constructo CvRs en niños y adolescentes, retomando los instrumentos de medida que han sido adaptados y validados para evaluar la CVRSI en idioma español en muestras poblacionales de niños con alguna patología y los dominios que lo conforman, enfatizándose un modelo conceptual que describe las dimensiones y factores asociados con la calidad de vida relacionada con la salud en las etapas de la niñez a la adolescencia para luego describir las temáticas que recientemente se han estudiado en el área. Por último, se plantea la necesidad del desarrollo de más investigaciones, especialmente en América Latina abordados desde las ciencias sociales, ya que la investigación ha estado focalizada en el ámbito de la medicina pediátrica con énfasis en las manifestaciones físicas.

Abstract The following is a review of evidence-based literature on the construct health-related quality of life infantile. There is described the historical and conceptual development of this term up to coming to the first studies in the infancy. It mentions the development of measuring instruments that have been adapted and validated to assess the health-related quality of life infantile in Spanish language so much generic as specifics and the domains that shape them. There is defined a conceptual model who describes the dimensions and factors associated with health-related quality of life in the stages of the childhood and the adolescence. And there are described the subject matters that recently have been studied in the field. Finally, there is a need of researches development, especially in Latin America approached from the social sciences, since the research has been focused in the field of the pediatric medicine, with emphasis on the physical manifestations.