Use Of Quality Of Life Measures Research Articles

“I’m not mad, bad, and dangerous … simply wired differently”: Exploring factors contributing to good quality of life with autistic women

BackgroundThere is increasing recognition of under-representation of autistic women in the academic literature and the impact of this on understanding, diagnosis, and support. Previous research has suggested that autistic women have poorer quality of life (QoL) than the general population. However, these findings have been established through use of QoL measures based on non-autistic norms and priorities. MethodsThis qualitative study used bottom-up, reflexive thematic analysis methods to explore how ten autistic women defined good QoL, and the factors identified as key to achieving this, using individual semi-structured interviews. ResultsFindings indicate four main themes that represent routes to good QoL: positive sense of self; feeling supported; autonomy; inclusion. Participants noted that being autistic itself was not a determinant of reduced QoL. Instead, participants’ QoL was underpinned by the extent to which participants understood themselves, others understood and accommodated their needs, and the person-environment fit. ConclusionsThe findings of this study align with a positive approach to neurological difference and have implications for diagnosis, post-diagnostic support and applications of current QoL measures for autistic women.

Quality Measures: A Review of Quality of Life Measurement for Counselors

Quality of life (QoL) as a measure in counseling research is rarely used. Measures for well-being or wellness take the place of the multi-dimensional concept of QoL in the work of many counselors. However, QoL measures are used widely in medical practice and related research. Therefore, counselors preparing to work in integrated care settings with other medical professionals, or counselors and researchers looking to expand their assessment options and knowledge, may benefit from understanding when and how to use QoL measures. This article provides an overview of the concept of QoL, a review of three QoL measures, and a case application to help familiarize counselors with the use of QoL measures. Future research with QoL in counseling applications is also discussed.

Are Psychological Predictors of Well-Being Stable in Oncological Patients? An Investigation on Two Romanian Samples of Cancer Patients from 2007 and 2014

For most patients and their relatives the confrontation with a cancer diagnosis and associated treatment may be a devastating experience (Bolund, 1990), which usually implies considerable amounts of pain and suffering. A high percentage of cancer-patients is confronted with a wide range of physical, emotional, interpersonal, social, professional, and spiritual problems, which dynamically change across the trajectory of the disease (Costanzo, Ryff, & Singer, 2009; Deshields, Tibbs, Fan, & Taylor, 2006; Grassi & Riba, 2012).Forecast for the next decade indicates a massive, over 50% increase in cancer related illnesses (Massie & Greenberg, 2005; WHO 2008a; 2008b). Fortunately, advances in detection and treatment methods resulted in significant increases in the life expectancy of cancer survivors (Ries, Harkins, Krapcho, Mariotto, Miller, Feuer et al., 2006, as cited in Costanzo, Stawski, Ryff, Coe, & Almeida, 2012), and many forms of cancer-related diseases have become chronic (Guex, 1989). Consequently, interest has gradually shifted towards the investigation of additional cancer-related aspects that transcend the mere physical functioning (i.e., disease progress, specificities of physical symptoms) (Aaronson, 1990). These investigations are based on the observations that many of the cancer-related parameters (e.g., emotional functioning, well-being, quality of life) may seriously affect the physical course of the illness, but are not quantifiable through bio-medical methods (Goerling & Stickel, 2015).Regardless of the multiple implications of oncological diseases, the major priority in cancer treatment should still remain the control of the tumor progression (Aaronson, 1990; Donovan, Sanson-Fisher, & Redman, 1989). However, it also became imperative to offer information regarding well patients can live with their illness, the emphasis shifting from how to prepare for a fatal outcome to knowing to survive (Guex, 1989, p. 25). In other words, the investigation of different aspects of the quality of cancer-patients' lives (Goerling & Sticker, 2015), of the factors/mechanisms implied, and the development of effective interventions meant to improve these aspects is crucial and has numerous implications.The World Health Organization defines quality of life (QoL) as an individual's subjective perception of his or her life position in relation to specific goals, expectations, and values (WHO 1993). Basically, QoL represents a state of well-being with two fundamental components: (i) the capacity to fulfill daily activities (physical, psychological, and social well-being - the individual's perception of his/her own condition), and (ii) satisfaction regarding his/her functioning and the capacity to exert control in the assessment of symptoms and efficiency of treatment (functional well-being) (Gotay, Korn, McCabe, Moore, & Cheson, 1992).In cancer patients, health-related quality of life (HQoL) represents the patient's assessment regarding the effects of the illness and treatment from a very personal, subjective perspective, which oftentimes does not correspond with the actual state of illness (Degi, 2011; Patrick, Kinne, Engelberg, & Pearlman, 2000).Even if treatment may generally improve the QoL of the patients, a variety of side-effects may produce significant impairments in specific areas of functioning (Bardwell & Fiorentiono, 2012; Goh, Steele, Jones, & Munro, 2013). A considerable number of studies (Dancey, Zee, Osoba, Whitehead, Lu, & Kaizer, 1997; Gotay, Kawamoto, Bottomley, & Efficace, 2008; Montazeri, 2009; Quinten et al., 2009; Quinten et al., 2011) has shown that, regardless of the type of the tumor (e.g., breast, pulmonary, ovarian cancer, metastasis), cancer patients' QoL is an important predictor of the survival rate. Moreover, research has systematically indicated that the regular use of QoL measures is highly beneficial for the doctor-patient relationship (Detmar, Muller, Schornagel, Wever, & Aaronson, 2002; Goerling & Stickel, 2015; Velikova et al. …

Why quality of life measurement is important in dermatology clinical practice: An expert-based opinion statement by the EADV Task Force on Quality of Life.

The aim of this study was to describe the many ways in which quality of life (QoL) measurement may potentially be advantageous in routine clinical dermatology practice. Thirteen members of the EADV Task Force on Quality of Life, eight dermatologists, three health psychologists, one epidemiologist and one pharmacoepidemiologist, independently listed all of the ways they thought this may be advantageous. A total of 108 different ways of using QoL information in clinical practice were suggested (median per participant = 8, range = 4-15), and were classified into 20 descriptive groups. These were sorted into the following five categories: inform clinical decisions, clinician-patient communication, awareness of skin disease burden, informing the consultation and clinical service administration. The wide range of potential benefits identified may not only encourage clinicians to use these measures but also highlights many areas requiring evidence to establish the true value of routine use of QoL measures.

An Exploratory Study of Self-reported Quality of Life in Children with Autism Spectrum Disorder and Intellectual Disability

We examined the content validity of the Pediatric Quality of Life Inventory™ Young Child Self-report (PedsQL™-YC) in children with autism spectrum disorder (ASD) and intellectual disability and made recommendations for the development of a quality of life (QOL) measure. Ten children, 14 parents, and three teachers were recruited for focus groups and interviews. Focus groups and interviews were conducted to obtain their perceptions about the appropriateness of the PedsQLTM-YC (Phase 1). Based on the results from Phase 1, recommendations for a QOL measure for children with ASD and intellectual disability were made (Phase 2). After piloting a QOL measure by children and subsequent interviews, further refinement was undertaken (Phase 3). Data from Phases 1 and 3 were analysed using thematic and content analyses. Findings suggest that a QOL measure for children with ASD and intellectual disability should be related specifically to the children’s daily life and contexts. Due to the specific cognitive and behavioural characteristics of this population, the wording, response options and presentation style of the existing PedsQL™-YC would need refinement. Questions about social interactions with friends appeared less relevant to children with ASD. These recommendations address the wording and formatting issues needed for a QOL measure for use in children with ASD and intellectual disability identified through qualitative research methods. Further research is needed to include additional or modified questions in the social domain.

Measuring quality of life in muscular dystrophy.

The objectives of this study were to develop a conceptual model of quality of life (QOL) in muscular dystrophies (MDs) and review existing QOL measures for use in the MD population. Our model for QOL among individuals with MD was developed based on a modified Delphi process, literature review, and input from patients and patient advocacy organizations. Scales that have been used to measure QOL among patients with MD were identified through a literature review and evaluated using the COSMIN (Consensus-Based Standards for the Selection of Health Measurement Instruments) checklist. The Comprehensive Model of QOL in MD (CMQM) captures 3 broad domains of QOL (physical, psychological, and social), includes factors influencing self-reported QOL (disease-related factors, support/resources, and expectations/aspirations), and places these concepts within the context of the life course. The literature review identified 15 QOL scales (9 adult and 6 pediatric) that have been applied to patients with MD. Very few studies reported reliability data, and none included data on responsiveness of the measures to change in disease progression, a necessary psychometric property for measures included in treatment and intervention studies. No scales captured all QOL domains identified in the CMQM model. Additional scale development research is needed to enhance assessment of QOL for individuals with MD. Item banking and computerized adaptive assessment would be particularly beneficial by allowing the scale to be tailored to each individual, thereby minimizing respondent burden.

Measuring quality of life in children with speech and language difficulties: a systematic review of existing approaches.

Children's and adolescent's speech and language difficulties (SaLD) can affect various domains of quality of life (QoL), and speech and language therapy interventions are critical to improving QoL. Systematically measuring QoL outcomes in this population is highly complex due to factors such as heterogeneity in impairments and differing targets during intervention. However, measurements of QoL are increasingly required by healthcare commissioners and policy-makers to inform resource allocation. To review the use of QoL measures in research involving children (age ≤ 18 years) with SaLD. A systematic review was undertaken. A systematic search across various databases was performed. Information on the methodological details of each relevant study, along with descriptions of the QoL measures employed, were extracted into standardized data extraction forms. Findings were discussed in a narrative synthesis. Twenty-one relevant studies were identified that deal with a range of subpopulations of children with SaLD. For the most part, generic QoL measures were used, although there was little convergence on the type of QoL measures employed throughout the literature. Five studies utilized preference-based QoL measures, including the 16D/17D, HUI3, EQ-5D and QWB-SA. Of these measures, the HUI3 demonstrated the most promising discriminant validity, although the preference weights for this measure were generated with adults. QoL among children with SaLD is not yet being captured in a systematic way. The HUI3 measure appears to show some promise for generating relevant preference-based QoL estimates, although further testing of the measure is required.

Quality of life in children with cerebral palsy: implications for practice.

The ability to assess the quality of life of children with cerebral palsy to inform and evaluate individual care plans, service planning, interventions, and policies is crucial. In this article, the recent evidence on quality of life in children with cerebral palsy is reviewed, with attention to the determinants of quality of life and role of this construct as a practical outcome indicator in clinical trials. Quality of life measurement advances for children with cerebral palsy are discussed with a focus on condition-specific quality of life measures, particularly, the Cerebral Palsy Quality of Life-Child, which is the first condition-specific quality of life measure for children with cerebral palsy. The article presents an overview for clinicians and researchers intending to use quality of life measures on children with cerebral palsy and provides recommendations for future research that will better inform practice in the field.

Assessment of quality of life in children and youth with autism spectrum disorder: a critical review

To review the use of quality of life (QOL) measures utilised in children and youth with autism spectrum disorder (ASD). Relevant articles were identified through database searches using MEDLINE, CINAHL Plus with Full Text and SPORTDiscus with Full Text via EBSCO Health Database, PsycINFO and ProQuest Health and Medicine (from 2000 to May 2013). Original research articles were included that measured QOL in children and youth with ASD aged 5-20 years. Searches were limited to articles from peer-reviewed journals, in English or German, and those available in full text. The search identified 1,165 titles and 13 met the inclusion criteria. The review identified a number of QOL measures used in children and youth with ASD, with the most common one being the Pediatric Quality of Life Inventory™ (PedsQL). QOL measures using self-reports were uncommon, and the reliability and validity of QOL measures were not sufficiently reported for this population. Large discrepancies in QOL scores were found between self-reports and proxy-reports. Despite the differences in study design and methodological quality, there was consistency in the results among studies; children and youth with ASD provided lower QOL scores, particularly for social domains, compared to their healthy counterparts. The PedsQL is likely to be an appropriate QOL measure for use in children and youth with ASD. Future research should focus on examining the appropriateness, reliability and validity of QOL self-reports for use in this population.

Measuring quality of life in patients with schizophrenia:an overview

Quality of life (QoL) is of great importance to patients with schizophrenia and their families. Although the use of QoL measures may contribute to better adherence to therapeutic interventions, more satisfaction with care, improved health outcomes and reduction of health costs, QoL assessment remains underutilized in clinical practice. In this review, the authors propose a reflection on the limitations and lack of impact of QoL measures in clinical care. Our argument is based on three challenges regarding conceptual aspects and metrics, use and limits and the usefulness of measuring QoL. For each challenge, the authors have suggested pragmatic proposals and new research directions to promote the use of QoL measures in the future. These avenues of research involve a shared responsibility between QoL researchers, the medical community and decision makers. Close collaboration between all parties is necessary to promote the use of QoL measures in schizophrenia.

Measuring the Quality of Life in Patients with Multiple Sclerosis in Clinical Practice: A Necessary Challenge

While the physical disability aspect of multiple sclerosis (MS) is of great importance, quality of life (QoL) measurements are being considered increasingly important with regard to evaluating disease progression, treatment, and the management of care provided to MS patients. Despite the acknowledged need to consider QoL issues, QoL assessment remains underutilized in clinical practice. These issues should be explored and understood to promote the use of measuring QoL in MS clinical practice. We explore the difficulties for clinicians: choosing and determining the most appropriate QoL measure and how to best integrate QoL measurements into clinical practice. This paper discusses several avenues to provide to clinicians arguments of the clinical relevance and accuracy of QoL instruments and ultimately to enhance the use of QoL measures in clinical practice for MS patients.

Multilevel latent variable models for global health‐related quality of life assessment

Quality of life (QOL) assessment is a key component of many clinical studies and frequently requires the use of single global summary measures that capture the overall balance of findings from a potentially wide-ranging assessment of QOL issues. We propose and evaluate an irregular multilevel latent variable model suitable for use as a global summary tool for health-related QOL assessments. The proposed model is a multiple indicator and multiple cause style of model with a two-level latent variable structure. We approach the modeling from a general multilevel modeling perspective, using a combination of random and nonrandom cluster types to accommodate the mixture of issues commonly evaluated in health-related QOL assessments--overall perceptions of QOL and health, along with specific psychological, physical, social, and functional issues. Using clinical trial data, we evaluate the merits and application of this approach in detail, both for mean global QOL and for change from baseline. We show that the proposed model generally performs well in comparing global patterns of treatment effect and provides more precise and reliable estimates than several common alternatives such as selecting from or averaging observed global item measures. A variety of computational methods could be used for estimation. We derived a closed-form expression for the marginal likelihood that can be used to obtain maximum likelihood parameter estimates when normality assumptions are reasonable. Our approach is useful for QOL evaluations aimed at pharmacoeconomic or individual clinical decision making and in obtaining summary QOL measures for use in quality-adjusted survival analyses.

Sacral nerve stimulation in patients with faecal incontinence

Sacral nerve stimulation (SNS) is a minimally invasive surgical technique with high success rates and few complications for the treatment of faecal incontinence (FI). It is now considered the first-line surgical option for FI in the UK and has been recommended by the National Institute for Health and Clinical Excellence (NICE) since 2007. The ultimate aim of all FI treatments is to improve quality of life (QoL). In this article, Noel Thin, Charles Knowles and Marion Allison review the current literature on the effectiveness of SNS in improving QoL and the different measures used to assess this, focusing on outcomes in the medium (12–36 months) and long-term (over 36 months). The congruence and use of QoL measures in the evaluation of success within the present literature is also assessed.

Nutritional intervention and quality of life in palliative care patients

Quality of life measures can be used by health professionals to assess effectiveness of nutritional interventions administered to palliative care patients. Stabilizing, maintaining and attempting to increase weight in palliative care patients through the support of oral feeding, and provision of artificial feeding, has been shown to mediate the metabolic and physical wasting effects of the disease process and improve general comfort. A quality of life instrument is a multi-dimensional questionnaire that health professionals can use to measure domains relating to physical, psychological and social aspects of living, and health and disease outcomes. There are three instruments specifically designed to assess quality of life in patients receiving palliative care. These are: The Palliative Care Quality of life Instrument, The Assessment of Quality of Life at the End of Life (AQEL), and The Spitzer Quality of Life Index (SQLI). General use quality of life measures are multifaceted; however, for use with palliative care patients, they have added dimensions of spirituality, existential issues (purpose and meaning of life), family members' perceptions of quality of care, symptom control and family support. Use of quality of life scales provides health professionals and organizations with an ideal measure for planning, targeting and evaluating health interventions.

A Review of the Impact of Occupational Contact Dermatitis on Quality of Life

Occupational contact dermatitis (OCD) is the most common occupational skin disease in many countries. We reviewed the current evidence on how OCD impacts on quality of life (QoL). The three commonly used QoL questionnaires in OCD were the Short-Form Health Survey (SF-36), the Dermatology Life Quality Index (DLQI), and the Skindex. Despite the availability of a variety of validated QoL instruments, none of them is specific to OCD or entirely adequate in capturing the impact of OCD on QoL. Nonetheless, the results of this paper do suggest a significant impact. Use of QoL measures in clinical settings will provide patients with an opportunity to express their concerns and assist clinicians to evaluate the effectiveness of management beyond the clinical outcomes. This paper also highlights the lack of a disease-specific QOL instrument and the importance of developing a validated measure to assess QOL in OCD, enabling comparison across countries and occupational groups.

Physicians' knowledge of health-related quality of life and perception of its importance in daily clinical practice

BackgroundHealth-related quality of life (QoL) has become a crucial outcome in medical care. However, few studies have assessed physician knowledge of QoL and rate of physicians adopting QoL measures in clinical practice. The present study aimed at assessing the level of knowledge of QoL and the perceived importance of incorporating QoL assessment in clinical practice among physicians of a tertiary level academic hospital in Rome, Italy.Materials and methodsA survey study performed through the distribution of a questionnaire assessing knowledge of QoL studies that used the SF-36 scale, participation in studies evaluating QoL as well as knowledge of journals publishing articles on QoL Physicians and residents at the hospital Policlinico Gemelli, Catholic University of Rome.ResultsThree-hundred nine physicians completed the questionnaire. Thirty-eight percent % reported knowing studies on QoL and using their results in clinical practice or for research purposes; 29% reported knowing the SF-36 questionnaire; 30% stated that at least one study assessing QoL had been conducted in their department. Fourty-six percent % stated that QoL must influence much or very much diagnostic choices and an even higher percentage reported that QoL must influence much or very much therapeutic and palliative strategies (70.8% and 91.3%, respectively). Reported barriers to the use of QoL measures in clinical practice were related to time constraints (8.7%) but also to doubts on methodological issues of QoL (30.7%). The large majority of physicians (94.3%) would have used more expensive drugs if these could improve QoL.ConclusionsThe present study shows that in a tertiary level academic italian hospital one third of the physicians, reported to know QoL measures and that more than 80% of them would like to use QoL in their daily clinical practice. Future studies are needed to identify the best strategies to implement the use of QoL measures in clinical practice.

Exploration of the Value of Health-Related Quality-of-Life Information From Clinical Research and Into Clinical Practice

Quality-of-life (QOL) instruments used in clinical research can provide important evidence to inform decisions about alternative treatments. This is particularly true when patients, such as those with cancer who are contemplating toxic chemotherapy, face tradeoffs between quantity of life and QOL or when the primary goal of therapy is to improve how patients feel. Surrogate measures (cardiac function, exercise capacity, bone density, tumor size) are inadequate substitutes for direct measurement of QOL. Quality-of-life measures will be most valuable when they comprehensively measure aspects of QOL that are both important to patients and likely to be influenced by therapy, when the QOL measurement instruments are valid (measuring what is intended) and responsive (able to detect all important changes, even if small), and when the results are readily interpretable (determining whether treatment-related changes are trivial, small but important, or large). Researchers are finding new, imaginative ways to help clinicians understand the magnitude of treatment impact on QOL. Additionally, QOL measures may be useful in clinical practice. Recent results from well-designed randomized controlled trials suggest that information on patient QOL provided to clinicians might, in some circumstances, result in benefits for these patients. Further investigation is warranted to confirm these observations and to define the particular combination of methods and settings most likely to yield important benefits.

How are Quality of Life Ratings Made? Toward a Model of Quality of Life in People with Dementia

Quality of life (QOL) has become a focus of research in dementia. In measuring QOL, the views of people with dementia often have not been considered as researchers have proposed that they may not be able to articulate their opinions. This paper counters this belief, presenting a study using a grounded theory methodology to explore the issues that people with dementia felt were important for their QOL. Further, we propose a model of QOL including hypothesised links between important issues (including family and health), QOL and other variables. Twenty-five participants took part in one of nine focus groups. The groups included participants with mild to severe dementia with ages ranging from 49 to 93 years. Results indicate that most of the participants were willing and able to talk about their QOL. Of the 25 participants, only two said that their cognitive problems affected their QOL. Twenty-two issues were discovered through analysis to contribute to QOL, including continuingto live in your own home, independence, spouse and other family, feeling happy and feeling useful. People with dementia used social comparisons in talking about their QOL, as well as direct evaluation of their own happiness. A model of QOL based on theories of coping and response shift is suggested. The fact that so few of the participants talked about disease-orientated issues challenges the large cognitive components included in many QOL measures for use with people with dementia.

How does psoriasis affect quality of life? Assessing an Ingram-regimen outpatient programme and validating the WHOQOL-100

BACKGROUND, OBJECTIVES AND METHODS: This paper reports a longitudinal study of the quality of life (QOL) of outpatients receiving treatment for psoriasis in secondary care that was designed to validate a new QOL measure for use in psoriasis: the WHOQOL-100. Additional aims were to monitor the changes to the QOL of psoriasis patients (n = 83) following a course of topical treatment--a modified Ingram regimen--and to compare their QOL with healthy people (n = 105). General QOL was much improved following treatment; psychological facets of body image and appearance, self-esteem and negative feelings were particularly responsive to clinical change, in addition to positive feelings and cognitive capacity. Domains on spirituality, independence and physical health also improved. Compared with healthy controls, pretreatment psoriasis patients showed poorer physical, psychological, independence and spiritual QOL. Validity and reliability were investigated and found to be good to excellent. Internal consistency was very good in 23 facets out of 25. Domains and facets were strongly correlated (weaker for spirituality) largely reaffirming the WHOQOL concept. While physical, independence and psychological domains have some components similar to the Short Form-36, the social and environment domains represent novel conceptual areas for the WHOQOL. Facets about positive and negative feelings were validated by results from the Profile of Mood States. Psoriasis severity was associated with QOL in only six facets out of 25. The WHOQOL-100 is reliable and valid, and hence a new and important measure for assessing quality of life in psoriasis.

The measurement of health-related quality of life (QOL) in paediatric clinical trials: a systematic review

BackgroundThe goal of much care in chronic childhood illness is to improve quality of life (QOL). However, surveys suggest QOL measures are not routinely included. In addition, there is little consensus about the quality of many QOL measures.ObjectivesTo determine the extent to which quality of life (QOL) measures are used in paediatric clinical trials and evaluate the quality of measures used.DesignSystematic literature review.Review MethodsIncluded paediatric trials published in English between 1994 and 2003 involving children and adolescents up to the age of 20 years, and use of a standardised QOL measure. Data Sources included MEDLINE, CINAHL, EMB Reviews, AMED, BNI, PSYCHINFO, the Cochrane library, Internet, and reference lists from review articles.ResultsWe identified 18 trials including assessment of QOL (4 Asthma, 4 Rhinitis, 2 Dermatitis, and single studies of Eczema, Cystic fibrosis, Otis media, Amblyopia, Diabetes, Obesity associated with a brain tumour, Idiopathic short stature, and Congenital agranulocytosis). In three trials, parents rated their own QOL but not their child's. Fourteen different QOL measures were used but only two fulfilled our minimal defined criteria for quality.ConclusionsThis review confirms previous reports of limited use of QOL measures in paediatric clinical trials. Our review provides information about availability and quality of measures which will be of especial value to trial developers.