Definition Of Quality Of Life Research Articles

Medical care priorities of community-dwelling older adults according to three dimensions of quality of life: Quality of daily living, satisfaction and happiness from birth to death, and human vitality.

Although the maintenance and improvement of quality of life (QoL) through holistic care are important in geriatric medical care, care priorities might differ depending on three essential aspects of QoL: the quality of daily living, satisfaction and happiness from birth to death, and human vitality, which are "Seikatsu," "Jinsei," "Seimei" in Japanese, respectively. We aimed to clarify these priorities in terms of medical care and examined how the definitions of QoL affected these priorities' rankings. This cross-sectional study involved community-dwelling older adults aged ≥65 years living in Kashiwa City, Chiba Prefecture, Japan. The number of participants was 1550 (mean age, 76.1 ± 5.8 years; 699 women [45.1%]). A self-administered questionnaire distributed in advance was used to rank 12 items sought in medical care. Participants were randomly assigned to one of three groups and sent the corresponding questionnaire, which differed only in the definition of QoL. The top priorities for medical care were "effective treatment of illness," "improvement of physical function," and "maintaining a high level of activity." When QoL was defined as "the quality of daily living, satisfaction and happiness from birth to death, and human vitality," participants were significantly more likely to rank QoL improvement as one of the top three items (adjusted odds ratio, 1.46; 95% confidence interval, 1.03-2.05). As a medical care priority, older adults desire improvement of multidimensional elements of life, including human vitality. Health care providers should consider this when making medical care decisions. Geriatr Gerontol Int 2024; 24: 493-498.

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.

Qualitative differences in perspective on children’s quality of life between children with cerebral palsy and their parents

BackgroundCerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child’s life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children’s and adults’ definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child and parent interviews were analysed separately using constructivist grounded theory methods and then findings were integrated to examine similarities and differences.ResultsAll participants sought child inclusion in social activities, education, and recreation, requiring negotiation, adaptations, and advocacy. Five conceptual categories emerged from child interviews: socialising, play, negotiating limitations, self-identity, and developing agency. This reflected an individual model of QOL supporting child development goals. Parent interview findings revealed concepts related to child-specific QOL (day-to-day functioning and enabling child goals), as well as parent and family functioning concepts aligned to models of “family QOL”, embracing impacts of family relationships and the interdependence of QOL among family members.ConclusionsThis study identified similarities and differences in child and parent perceptions of QOL for the child with CP. Children provided insights into the importance of play and peer support, and their developing self-identity and sense of agency. Self-directed free play, especially, was identified by children but not parents as a central everyday activity promoting wellbeing and social inclusion. Parents discussed family functioning and aspects outside of child sight, such as managing time and financial resources. Relying on parents’ perspective alone to model child QOL misses valuable information that children contribute. Equally, child report alone misses parent experiences that directly influence child QOL. There is value in incorporating family QOL into parent reports while developing a conceptually separate child self-report QOL instrument.

Board strategy on the employees’ quality of life improvement using SERVQUAL model: A literature review

The aim of this paper is to explore the elements of service quality (SERVQUAL) for improving the quality of life of staff via an art-based curriculum with business elements. Based on the research of Latchem (2006) and Bond, Zawacki-Richter, and Nichols, 2019) on the trend of educational technology by using content analysis. This paper has also conducted 2 stages of qualitative secondary data search: 1) quality of life (QoL) was the major part of data analysis to support the findings: a definition of QoL, a mechanism to measure QoL, and challenges for maintaining QoL; and 2) new normal of productivity via art-based curriculum with business elements for resilience and productivity under COVID-19 was conducted to apply findings onto the SERVQUAL model. The learning outcomes on SERVQUAL and pieces of literature on QoL demonstrate that the principles of SERVQUAL are embedded in measuring QoL. Besides, twenty articles published from 2019 to 2021 were studied. Several related factors were found, including technological tools for art content, education of art for life, curriculum on ethical issues in art content, policy in content protection, perception of the art community, and research thinking skills. The QoL may be tackled via the application of an art based curriculum with business elements for resilience and productivity. With these findings, organizations shall have an idea of designing activities to enhance the QoL in the workplace. The paper details the learning outcomes generated from pieces of literature in the past; and the use of SERVQUAL which has potential in QoL training and individual development.

Geographical Differences in the Quality of Life in Poland: Challenges of Regional Policy

Commonly used in human geography, quality of life (QOL) refers to the way and degree to which objective human needs are met, not only existential ones, but also those regarding the development of the human personality. This article diagnoses QOL understood in this way in Poland and its changes between 2004 and 2018 (i.e. during modernization), which saw the continuation of systemic transformation after joining the EU. To fully identify the regularity of spatial differences in the analysed phenomenon, 380 local units are used as reference points. First, we formulated an operational definition of multifaceted QOL with its separate dimensions, as well as selecting and constructing organized indicators that can be determined at the local level. Then we quantified local differences in the rate of growth and the level of QOL using multivariate analysis. Third, on the basis of the obtained results, we sought to reach the most significant conclusions: (1) the dynamic economic growth, enjoyed in Poland in 2004–2018, did not change significantly the spatial diversity of the quality of life on a local level. (2) To a large extent, the persistent differences in the quality of life in Poland are related to the historical spatial differences in the level of urbanisation and the well-established, traditional economic structure of the specific territorial units. (3) A higher degree of urbanisation coupled with the service- and service and industry-related functional nature of the local units in Poland are conducive to a better quality of life. This confirms the regularities observed in the countries on the verge of a rapid economic development.

Occupational Risks in Hospitals, Quality of Life, and Quality of Work Life: A Systematic Review

This study systematically reviewed the relationship between occupational risks and quality of life (QoL) and quality of work life (QWL) in hospitals. A systematic review was performed according to the recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guide, and the protocol was submitted on the PROSPERO website (CRD 2019127865). The last search was performed in June 2021 by two independent reviewers in the main databases, a gray literature database, and a manual search (LILACS, MEDLINE/PubMed, PsycINFO, CINAHL, Scopus, Embase, Brazilian Digital Library of Theses and Dissertations, Ovid). As eligibility criteria, we included observational studies, with adult hospital workers, with no restrictions on date and language, any type of instrument to assess QoL and QWL, any definition of QoL and QWL, and studies that presented the relationship between exposure and outcome. Newcastle–Ottawa was used to assess the methodological quality and RTI-Item Bank to assess the risk of bias. Given the impossibility of performing a meta-analysis, a qualitative synthesis was used to present the results. Thus, 11 studies met the criteria and were included in the review, with 6923 individuals aged 18 to 64 years. The studies were mainly carried out with health professionals (81.81%), women (63.60%), and in Asian countries (63.63%). All studies used different instruments and ways to categorize the QoL and QWL, and occupational risks. Only one study assessed occupational noise and another the ergonomic risk. All of them presented a relationship between occupational risk and quality of work life. They pointed to the need for measures to improve the lives of these professionals in the work environment. Therefore, studies show a relationship between occupational risks (noise, ergonomics, and stress) and workers’ perception of low or moderate quality of work life. However, more homogeneous studies are necessary for instruments, conceptualization, and categorization of quality of work life.

Maqasid Approach In Measuring Quality Of Life (QoL)

Studies and discussion in measuring the quality of life (QoL) has been at the centre stage ever since people realize its importance for the wellness of mankind. It is even more important when the concept is associated with sustainable development goal (SDG). Some studies relate QoL with physical health, psychological health, social relationship and environment. Others associate it with authentic happiness that refers to the criteria of pleasant life, a good life, a meaningful life and balanced life. Nevertheless, what can be considered as a holistic QoL? Can it be confined to the material and physical wellness of the people? Could there be any different perspective in looking at the concept in a holistic view? This study would attempt to answer the above questions by deliberating the dimensions of QoL enshrined by the maqasid al-shariah (the objectives of shariah). External Desk Study is employed in getting the required information and data relating to the definition and measurement of QoL. Relevant literatures in the area are reviewed and analysed in coming up with the new dimensions of holistic QoL. In analyzing the data, deductive approach is used to come up with the list of indicators for every dimension of maqasid-based QoL. Finding of this study is expected to shed light in looking into a much broader dimension of QoL.

Ближайшие и отдаленные результаты хирургического лечения синдрома диабетической стопы и оценка качества жизни больных (обзор литературы)

В настоящее время при многих хронических заболеваниях все большее значение придается исследованию качества жизни (КЖ). Сахарный диабет (СД) в силу сложного режима контроля и лечения, а также многочисленных соматических проявлений (острых и хронических осложнений) оказывает выраженное воздействие на КЖ. КЖ, в свою очередь, оказывает значительное влияние на прогноз заболевания. В данном обзоре рассмотрены ближайшие и отдаленные результаты хирургического лечения синдрома диабетической стопы, определения КЖ и сходных понятий, освещены основные подходы к исследованию КЖ при СД, приведен перечень наиболее часто использующихся инструментов для оценки КЖ. Анализ публикаций показал, что до сих пор недостаточно проводилась системная проработка данной проблемы, не реализованы возможности современного уровня развития техники и информационных технологий для ее решения. Таким образом, несмотря на дальнейшее развитие сосудистой хирургии, многие вопросы, связанные с диагностикой и методами лечения больных с язвенно-некротическими поражениями нижних конечностей, остаются нерешенными. Качество диагностических и лечебных мероприятий по-прежнему зависит от профиля лечебного учреждения, наличия в нем отделения хирургии сосудов, субъективного отношения врачей к тем или иным методам лечения, их знаний и опыта в этой области. Наиболее эффективно решить данные проблемы и повысить качество диагностики, лечения и последующей жизни пациентов позволяет создание алгоритма, определяющего последовательность действий врачей при поступлении в стационар такого больного. Анализ литературы показал, что для более точной оценки ближайших и отдаленных результатов реконструктивных сосудистых операций у больных с диабетической ангиопатией необходимо использовать определение показателя КЖ и его параметров, что в дальнейшем позволяет выбрать наилучший способ оперативного лечения в каждом конкретном случае, а также выявить влияние хирургической операции или других видов лечения на психику пациента. По мнению некоторых авторов, имеющиеся классификации синдрома диабетической стопы неполно отражают клиническую картину осложнений, а следовательно, в большинстве случаев не определяют тактику лечения больных. Существуют различные мнения в отношении оперативно-хирургических приемов. Недостаточно полно и не всегда обоснованно описаны способы снижения послеоперационных осложнений, частота которых во многих клиниках превышает 30 %.

Роль опросников в оценке качества жизни пациентов с сахарным диабетом (обзор литературы)

В настоящее время при многих хронических заболеваниях все большее значение придается исследованию качества жизни (КЖ). Сахарный диабет (СД) с учетом сложного режима контроля и лечения, а также многочисленных соматических проявлений (острых и хронических осложнений) оказывает выраженное воздействие на КЖ. В обзоре рассмотрены определения КЖ и сходных понятий, освещены основные подходы к исследованию КЖ при СД, приведен перечень наиболее часто использующихся инструментов для оценки КЖ. Существует большое количество методик для определения качества жизни. Все они могут быть разделены на две группы: неспецифические (применяемые для оценки качества жизни пациентов с любым заболеванием) и специфические (предназначенные для его изучения у пациентов, страдающих от определенного заболевания или состояния). Обширные исследования психопатологических проявлений при СД к настоящему моменту позволили сделать выводы о негативном влиянии депрессии и тревоги на КЖ, однако недостаточно изучен более широкий спектр сопутствующей СД невротической и неврозоподобной симптоматики, дискутируемым остается вопрос о ее этиологии, что препятствует разработке целенаправленных психопрофилактических и психокоррекционных программ. Cовременные исследования психосоциального аспекта КЖ пациентов с СД 1-го типа раскрывают значение и взаимосвязи множества факторов в его структуре, отражающих сложные соматопсихические и психосоматические отношения при этом заболевании. Однако пристальное внимание исследователей к интегративным показателям степени адаптированности пациентов сочетается, с одной стороны, с недостаточной изученностью более тонких и глубинных механизмов психической адаптации (и ее нарушения) к жизни с СД 1-го типа, а с другой — с недостатком исследований, основанных на комплексном подходе к изучению КЖ пациентов с СД 1-го типа, который подразумевает и комплексный, личностно-ориентированный подход к их психологическому обследованию.

Quality-of-Life Assessments That Can Be Used for Patients Diagnosed With Amyotrophic Lateral Sclerosis: A Scoping Review

Abstract Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. There is a need for a modernized quality-of-life (QoL) definition and a greater distinction between global and health-related quality of life (HRQoL) for people with amyotrophic lateral sclerosis (PALS). The available assessments are intended to interpret global quality of life and HRQoL for PALS. OT practitioners will be able to use the research to determine a comprehensive definition of QoL and the appropriate QoL assessment to use for PALS in clinical practice. Primary Author and Speaker: Addie Broom Additional Authors and Speakers: Hannah Prescott, Mallorie Savage, Addie Broom, Emily Crawford, Mackenzie Franklin, Teal Benevides, Stephanie Johnson

The Quality of Life Definition: Where Are We Going?

The quality of life (QoL) concept now includes new aspects related to patients’ well-being because QoL has become more of a personal perception than an an objective and measurable entity. Here, we discuss the principal aspects of QoL-related aspects in urology and andrology by using a narrative review. Some aspects concerning the QoL are essential when managing uro-andrological patients. The aim of treatments should not only include the absence of disease or symptoms relief but also the improvement of a patient’s QoL with regard to his/her internal status and relationship with others. In this sense, any therapeutic approach should be based on the patient’s perspectives and not only on the instrumental and laboratory findings. Finally, we discussed the role of a patient’s sexual partner adding an extra dimension to the patient-centerd approach as part of the QoL concept in andrology.

A closer look at quality of life in the hepatocellular carcinoma literature.

Adults with hepatocellular carcinoma (HCC) have a high symptom burden. Their quality of life (QOL) has been shown to be significantly impacted by both the disease and its treatment, adding to the high symptom burden that these patients experience. The primary aims of this paper are as follows: (1) to identify how QOL is being defined in HCC literature and (2) to identify how QOL is being measured in the HCC literature using Ferrell's model of QOL. A systematic review was completed of relevant studies published after 2014, using PubMed, CINHAL, and PsycInfo. Relevant studies were reviewed by 2 reviewers using PRISMA guidelines. From a total of 1312 papers obtained in the initial database search, 30 met inclusion criteria and are included in this review. From the included articles, 10% included a definition of QOL and 3% addressed the spiritual domain of QOL. Majority of study participants were in the early stage of HCC, though the majority of adults with HCC are diagnosed in the advanced stage. Only 3% of included studies included greater than 22% population of advanced stage of HCC. The results of this systematic review demonstrate the need for future research into QOL in the advanced stage of QOL. It also identified gap in the literature concerning the definition of QOL in HCC and the spiritual domain of QOL in HCC.

What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature.

Many neuromotor conditions affect children from a young age through to adulthood, impacting their quality of life (QOL). For QOL to be accurately measured in these children, pediatric QOL must first be conceptualized. Some theoretical models and definitions have been proposed to understand QOL, but they were not developed for the pediatric population. The purpose of this review is to build on existing frameworks of QOL and develop a framework and definition of pediatric QOL for measurement purposes, by integrating the findings of multiple qualitative studies involving children and adolescents with physical disabilities. A systematic search was conducted on four databases. Inclusion criteria were qualitative studies with participants with common neurological and neuromuscular conditions. The content of studies had to involve the lived experiences of children and adolescents with disabilities. Thematic synthesis was conducted. 48 studies were included. Results generated a schema of the causes and the mitigators of QOL. This consisted of casual indicators of QOL, mitigators, and components of QOL. Themes under QOL included thoughts and feelings, fitting in, self-image, about the future, and independence. A new framework and definition of pediatric QOL were proposed. In conclusion, pediatric QOL for children with disabilities is formed by their thoughts and feelings, being accepted by society, being able to forge an identity that is beyond their disability, having autonomy, and having a hope for the future. The resulting QOL framework proposed here can also aid future development of QOL measures in children with physical disabilities.

Are We Missing the Target When Measuring Quality of Life?

Over the last several decades, many instruments have been created to measure quality of life (QoL) in older adults, particularly for intervention research on individuals living with dementia. However, since definitions of QoL lack standardization across the research literature, the question of how to holistically capture an elusive and expansive concept such as QoL remain. This research uses qualitative content analysis to explore definitions and domains of QoL with an eye toward overlap and gaps. Definitions of QoL were extracted from gerontology encyclopedia entries and other peer-reviewed supplemental resources and analyzed for themes using Dedoose qualitative software. Results revealed three over-arching themes: no standardized or universal definition of QoL, use of subjective and objective factors for measurement, and varying domains of QoL. Additionally, we further distilled theme three to identify eight unique QoL domains: 1) economic/financial, 2) environment, 3) ADL/IADL function, 4) participation in activities, 5) personal resources, 6) physical health, 7) psychological well-being, and 8) social/relational, the total of which were only found in one of 15 definitions of QoL. Overall, findings led to an overarching definition of QoL that cuts across multiple dimensions and factors. We argue that by having all eight domains our understanding and measurement of QoL is enhanced, thereby improving our assessment of existing definitions of QoL, as well as the instruments used to measure QoL.

INNV-05. SOCIAL MEDIA AND “TWEET CHAT ANALYSES” TO INFORM QOL AND PALLIATIVE CARE NEEDS IN PATIENTS WITH PRIMARY BRAIN TUMORS

Abstract BACKGROUND Despite a standard of care protocol for the treatment of brain cancer, patients often suffer motor and cognitive deficits and chronic exposure to stress and anxiety, detrimental to patient quality of life (QOL). Palliative care addresses patient and care partner (caregiver) QOL needs as a complement to curative treatment, using a team-based, multidisciplinary approach. Elements of palliative care that are highest priority for patients with brain cancer are not known. METHODS A multi-stakeholder group including clinicians, researchers, patients, and care partners convened (hereafter: “stakeholders”), led jointly by a brain cancer patient and health services researcher. The stakeholders identified QOL needs for patients with brain cancer and their care partners, and mapped these needs onto a brain cancer-specific palliative care model. In 2018, patients, researchers, and clinicians participated in two moderated “tweet chats” to test and further inform QOL definitions and palliative care needs (n=79). RESULTS Thematic analysis of tweet chat transcripts revealed patients and care partners were most concerned by: challenging behaviors resulting from tumor and resulting treatment; depression and anxiety; changes in sexuality/intimacy loss; grief over the loss of identity and things one previously enjoyed/was able to do; financial toxicity; changes in close relationships; and dependence on a broader social network. The stakeholders used this work to inform a set of QOL needs and corresponding palliative care elements. Each need was mapped onto a corresponding element for development of a palliative care model. Further research questions were identified to inform further research in this area. CONCLUSIONS Patients with brain cancer have complex QOL needs beyond symptom management. A palliative care model for brain cancer should include a multidisciplinary care team including care partner support and education. In addition to the palliative care physician, additional disciplines may include a social worker, chaplain, mental health professional, and rehabilitative services therapists.

A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research

Background and aimsLittle is known about the quality of life (QoL) of adults with cerebral palsy (CP). This systematic review aimed to examine the extent to which methodological best practices have been applied to achieve valid and informative QoL assessments for this population. Methods and proceduresSystematic search identified 1097 non-duplicated, quantitative articles assessing self- and/or proxy-reported QoL in samples of adults with CP. Eighteen studies were included and data extraction was conducted for sampling characteristics, selection of informants (self- and proxy-reports), adequacy of administered measures, and examination of age-related specificities. Outcomes and resultsThe results revealed discrepancies between conceptual definitions of QoL and their measurement approaches in CP. Most papers relied on self-reports. Most studies were cross-sectional and often based on relatively small samples; the variable of age was considered inconsistently in statistical analyses. Conclusions and implicationsFuture strategies to improve the validity and applicability of QoL assessments of adults with CP would include: using a clear definition of QoL aligned with the measurement employed; considering proxy-reports whenever appropriate, to encompass larger samples and a wider range of ability; and using age-stratified analyses, in order to deepen understanding of potentially modifiable variables and paths linked to QoL outcomes.

Operationalising the quality of life construct in studies of alcohol and drug residential rehabilitation programme clients: A systematic review.

Quality of life (QOL) is increasingly recognised as an important treatment indicator in the alcohol and other drug (AOD) sector, particularly in treatment modalities providing 'whole of life programmes', such as residential rehabilitation. However, it is currently unclear how studies conducted in AOD residential rehabilitation settings have operationally defined and measured QOL. This study therefore aimed to determine current practices in defining and measuring the QOL of residential rehabilitation clients. A systematic review of studies examining the QOL of AOD residential rehabilitation clients was conducted. Potential studies published in English between 1990 and 2018 were identified through a search of electronic databases (e.g. PsycINFO and PubMed), search engines (Google Scholar) and article reference lists. The search identified a total of 1267 records, of which 16 met the inclusion criteria. Less than half of the included studies provided an operational definition of QOL. QOL was generally understood to be a subjective, multidimensional, client assessment construct. Twelve different instruments were used to assess QOL, of which two enabled clients to identify QOL dimensions important to themselves. QOL has been inconsistently measured in studies of AOD residential rehabilitation clients. As a result, the comparability and validity of research in this field may be weakened. There is a need to develop a consensual operational definition of QOL, including a core set of domains relevant to and endorsed by residential rehabilitation clients. Appropriate tools to measure client QOL need to be identified and disseminated.

A critical examination of indigenous people, tourism and quality of life

ABSTRACTAn increased demand for indigenous tourism experiences has led to increased contact between tourists and indigenous people, influencing aspects of their quality of life (QOL). This discussion paper examines tourism impacts on QOL in host communities from indigenous perspectives, with a particular focus on indigenous Fijian societies. While sharing similarities in QOL priorities, Indigenous Fijian communities reflected differences as they prioritized their vanua and cultural traditions within their QOL space. Environmental protection, kinship, solesolevaki(social capital) were prioritized from an indigenous Fijian perspective. These findings challenge current QOL definitions, highlighting the need for culturally informed classifications. This attention is critical to ensure that indigenous communities that have become tourism-active achieve sustainable tourism development. More indigenous ethnographic studies are needed to ensure greater understanding of tourism’s impacts on QOL, so that inherent costs are minimized and benefits are maximized. A more comprehensive understanding of indigenous tourism, specifically one that takes into account the needs and values of its stakeholders which relate to their QOL is needed. An integrated approach that considers indigenous values and cultural priorities is recommended for consideration in contemporary tourism and QOL frameworks in order to create an enhanced QOL paradigm that is applicable across cultures and communities.

Commentary on “Thinking differently? Autism and quality of life”

PurposeThe purpose of this paper is to describe the possible impact of normalisation on the perceptions of quality of life (QoL) and the impact of this association on the research to date. This commentary reflects on the implications of limiting QoL research to autistic people who are perceived to be “more able”.Design/methodology/approachThis commentary discusses the implications of undertaking QoL research in the field of autism.FindingsThis commentary argues for further consideration of the autistic voice in QoL research. Researcher epistemology and life experience, including experience of autistic people, is examined in terms of how QoL might be perceived and attributed. Further participatory research in the field of quality of life of autistic people, including those with a learning disability and engagement with a variety of autistic people, is called for.Originality/valueThis commentary suggests that the existing definitions of QoL, founded on principles of normalisation, may not be completely applicable to autistic people, and that new ways of both defining and measuring QoL might be needed.

Lay Perspectives of Quality of Life in Rheumatoid Arthritis Patients: The Relevance of Autonomy and Psychological Distress.

The aim of this study is to increase the understanding of Quality of Life (QoL) in rheumatoid arthritis (RA) patients and explore the personal features of living with the disease. Sixty-two RA patients (MAge = 56.7; SD = 11.2; female = 83.9%) were interviewed. Assessment included topics on medical condition, functional status (HAQ-DI), and on their perceived difficulties and worries in having RA. Patients' overall definition of QoL was also inquired. Most patients lived with RA for a long period of time (M = 16.5 years; SD = 11.6) and presented moderate HAQ-DI scores (M = 1.37; SD = 0.75). Main features of QoL in RA highlight the importance given to physical health, particularly to independence and autonomy. Psychological distress emerged also as an important feature of living with RA, constraining a good QoL. Medical staff should consider the RA patients' emotional needs, expectations, and main perceived determinants of their QoL to better help them.