scholarly journals Neurodiversity, Quality of Life, and Autistic Adults: Shifting Research and Professional Focuses onto Real-Life Challenges

2009 ◽  
Vol 30 (1) ◽  
Author(s):  
Scott Michael Robertson
Keyword(s):  
Quality Of Life ◽  
Real Life ◽  
Font Size ◽  
Human Diversity ◽  
Deficit Model ◽  
Life Challenges ◽  
Autistic People ◽  
Strengths And Difficulties ◽  
Autistic Adults

<p class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Arial;"><span style="font-size: small;">This article examines challenges to the quality of life experienced by autistic adults.</span><span style="font-size: small;"> The author, who is an autistic researcher, first shares how a neurodiversity perspective offers an important alternative to the deficit model of autism. Whereas the deficit model portrays autistic people as ill, broken, and in need of fixing, the neurodiversity perspective portrays it as a form of human diversity with associated strengths and difficulties. The article’s discussion then shifts to presenting Schalock’s (2000) quality of life framework as a neurodiversity-compatible lens through which domains of quality of life can be viewed. The article analyzes in detail these core domains in relation to the lives of autistic adults. The author suggests that a collaborative approach between professionals/researchers and autistic adults is needed to develop meaningful solutions to these challenges, and he presents possibilities for collaboration.<span style="mso-spacerun: yes;">  </span></span></span></p><p class="MsoNormal" style="margin: 0in 0in 10pt;"><span style="font-family: Arial;"><span style="font-size: small;">Keywords</span></span></p><span style="font-size: 12pt; font-family: Arial;">Autism, Neurodiversity, Quality of life, Autistic Adults</span><span style="font-size: small; font-family: Times New Roman;"> </span>

scholarly journals Sociocultural context and autistics’ quality of life: A comparison between Québec and France

Autism ◽  
2021 ◽  
pp. 136236132110352
Author(s):  
Vicky Caron ◽  
Nuria Jeanneret ◽  
Mathieu Giroux ◽  
Lucila Guerrero ◽  
Mélanie Ouimet ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Experience ◽  
Sociocultural Context ◽  
Autistic People ◽  
The Social ◽  
French Speaking ◽  
Awareness Programs ◽  
Autistic Adults ◽  
Public Campaigns

Quality of life is important for the development and evaluation of interventions for autistic people. It is a multidimensional concept, anchored in a sociocultural context and based on a person’s subjective assessment of their life. The aim of this study is to examine whether the determinants of perceived quality of life vary by country (or culture) by comparing two groups of French-speaking autistic adults ( n = 430), one in France and the other in Québec (Canada). A cross-sectional survey was conducted to provide information on the quality of life (Autism Quality of Life Measure—ASQoL), diagnosis and health conditions, self-evaluation of autistic traits (Autism-Spectrum Quotient—AQ10), and sociodemographic characteristics of these two samples. The results of our comparison of French-speaking autistic adults in France and Québec suggest that sociocultural context has an impact on autistic people’s quality of life ( r2 = 0.280). The Québec group reported a superior quality of life. The social experience of autism-related stigmatization emerges as a strong predictor of lower quality of life in both groups. However, the two groups differ with other predictors. This study demonstrates the importance of considering sociocultural context in measuring quality of life in autistic adults. It emphasizes the need for awareness programs and public campaigns aimed at identifying and countering stigmatization processes. Lay abstract What is already known about the topic? Quality of life refers to how people perceive aspects of their life such as physical health, material security, and interpersonal relationships. Studies have reported lower quality of life among autistic individuals than in the general population. What does this article contribute? This article contributes to a better understanding of quality of life and its measures from the point of view of autistic adults. By comparing two groups of French-speaking autistic adults from two different places (France and Québec—Canada), this research shows that the perception of quality of life and its determining factors differ for autistic adults living in each country. The Québec group reported a superior quality of life, and some quality of life predictors were different in each group. The social experience of autism-related stigmatization, however, was a powerful predictor of quality of life for all. Implications for practice, research, and policy To promote a higher quality of life for autistic people, it is important to consider the sociocultural context and implement awareness programs and public campaigns aimed at identifying and countering stigmatization processes.

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming

Autism ◽  
2021 ◽  
pp. 136236132110206
Author(s):  
Serene Habayeb ◽  
Sanaa Al-Harahsheh ◽  
Allison Ratto ◽  
Alyssa Verbalis ◽  
Cara Pugliese ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Unmet Needs ◽  
The United States ◽  
Respite Care ◽  
Adults With Autism ◽  
Autistic People ◽  
Autistic Adults ◽  
Stakeholder Input

Autism services in Qatar are expanding rapidly, but focus predominantly on young children. The shortage of qualified autism providers and minimal opportunities for autistic youth to participate in school, work, and community have led to a growing population of autistic youth transitioning to adulthood with substantial unmet needs for behavioral support and instruction in critical life skills. Our objective was to identify the needs and preferences for respite care for autistic adolescents and young adults in Qatar utilizing family and stakeholder input. Researchers from the United States collaborated with researchers and community leaders from Qatar to evaluate perspectives regarding respite care with families of autistic people ( n = 11) and providers/community stakeholders ( n = 20) through surveys and focus groups. Four main themes emerged including (1) a need for trust and reliability of individuals and of systems to support autistic adults, (2) prioritizing quality of life for autistic individuals and their families, (3) seeking meaningful inclusion, and (4) challenges stemming from service delivery systems. Families in Qatar endorsed clear interest in respite care services for young adults with autism, regardless of their child’s age. This study highlights the value of including both provider expertise and family concerns in developing new services for an under-served community. Lay abstract Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

Long-Term Effectiveness of Fingolimod for Multiple Sclerosis in a Real-World Clinical Setting

2021 ◽  
pp. 1-6
Author(s):  
Cihat Uzunköprü ◽  
Yesim Beckmann ◽  
Sabiha Türe
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Real Life ◽  
Life Assessment ◽  
Health Related Quality ◽  
Serious Adverse Events ◽  
Related Quality ◽  
Health Related

<b><i>Introduction:</i></b> The primary aim of the present study was to evaluate the long-term efficacy of fingolimod in patients with multiple sclerosis (MS); secondary aims were to describe the safety of fingolimod with the evaluation of treatment satisfaction and impact on the quality of life in real life. <b><i>Methods:</i></b> We collected clinical, demographical, neuroradiological, and treatment data, including pre- and posttreatment status health-related quality of life from 286 MS patients consecutively treated with fingolimod. Clinical assessment was based on the Expanded Disability Status Scale (EDSS), and quality of life assessment was performed with MS-related quality of life inventory (MSQOLI). The data were recorded at baseline and every 6 months for 2 years. <b><i>Results:</i></b> One hundred and fourteen males and 172 females were enrolled. The annualized relapse rate and EDSS showed a statistically significant reduction during the observation period (<i>p</i> &#x3c; 0.001). The patients also demonstrated substantial improvements in magnetic resonance imaging (MRI) outcomes (<i>p</i> &#x3c; 0.001). Health-related quality of life scores improved significantly between baseline and 24-month visit (<i>p</i> &#x3c; 0.001). No serious adverse events occurred. <b><i>Conclusion:</i></b> In our cohort, fingolimod treatment was associated with reduced relapse, MRI activity, and improved EDSS and MSQOLI scores. Additionally, fingolimod has been able to maintain its effectiveness over a considerable long period of treatment.

The impact of sleep quality on quality of life for autistic adults

2021 ◽  
Vol 88 ◽  
pp. 101849
Author(s):  
Kiley J. McLean ◽  
Shaun M. Eack ◽  
Lauren Bishop
Keyword(s):  
Quality Of Life ◽  
Sleep Quality ◽  
Autistic Adults ◽  
The Impact

scholarly journals Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

2021 ◽  
Vol 10 (9) ◽  
pp. 1852
Author(s):  
Gry Assam Taarnhøj ◽  
Henriette Lindberg ◽  
Christoffer Johansen ◽  
Helle Pappot
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Life Experience ◽  
Locally Advanced ◽  
Neoadjuvant Treatment ◽  
Real Life ◽  
Oncological Treatment ◽  
Patient Reported

Patients with urothelial cell carcinoma (UCC) often have comorbidities, which cause trouble for the completion of oncological treatment, and little is known about their quality of life (QoL). The aim of the present study was to obtain and describe patient-reported outcomes (PRO) and QoL data from UCC patients in the treatment for locally advanced muscle-invasive or metastatic UCC. A total of 79 patients with UCC completed four questionnaires (EORTC QLQ-C30, QLQ-BLM30, HADS, and select PRO-CTCAE™ questions) once weekly during their treatment. From those, 26 patients (33%) underwent neoadjuvant treatment for local disease while 53 patients (67%) were treated for metastatic disease. Of all patients, 54% did not complete the planned treatment due to progression, nephrotoxicity, death, or intolerable symptoms during treatment. The five most prevalent PRO-CTCAE grade ≥ 2 symptoms were frequent urination (37%), fatigue (35%), pain (31%), dry mouth (23%), and swelling of the arms or legs (23%). The baseline mean overall QoL was 61 (±SD 24) for all patients (neoadjuvant (73, ±SD 19) and metastatic (54, ±SD 24)) and remained stable over the course of treatment for both groups. A stable overall QoL was observed for the patients in this study. More than half of the patients did not, however, complete the planned treatment. Further supportive care is warranted for bladder cancer patients.

Abstract 15830: Elevated Resting Heart Rate is Associated With Impaired Quality of Life and Worse NYHA Functional Capacity in Patients With Chronic Heart Failure: Results From REALITY HF Study

Circulation ◽  
2014 ◽  
Vol 130 (suppl_2) ◽  
Author(s):  
Yuksel Cavusoglu ◽  
Omer Kozan ◽  
Ahmet Temizhan ◽  
Serdar Kucukoglu
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Heart Rate ◽  
Functional Capacity ◽  
Real Life ◽  
Left Ventricular ◽  
Summary Score ◽  
Treatment Modalities ◽  
Resting Heart Rate

Purpose: Resting heart rate (HR), health related quality of life (HQoL) and NYHA functional capacity are referred as important determinants of prognosis and targets of therapy in heart failure (HF). REALITY HF (Resting Heart Rate and Real Life Treatment Modality in Outpatients with Left Ventricular Systolic Dysfunction) study data were analyzed for the evaluation of any relationship of resting HR with HQoL assessed by Kansas City Cardiomyopathy Questionnaire (KCCQ) and NYHA functional class. Methods: REALITY HF was a multicenter, prospective registry designed to evaluate HF patients’ characteristics and effects of treatment modalities on resting HR and enrolled 1057 patients (age 61±12 years) with LVEF <40%. 781 (74%) patients in sinus rhythm were included in this analysis. Patients were classified into 4 groups according to the quartiles of HR: Q1:<68 bpm (n=234), Q2:69-75 bpm (n=189), Q3:76-87 bpm (n=194) and Q4:>87 bpm (n=164). KCCQ was completed in a random sample of 320 (Q1:n=27, Q2:n=99, Q3:n=125, Q4:n=69) patients, in which higher scores show better patient’s health status. Results: During enrollment, 82% of patients were receiving ≥2 drugs including ACE[[Unable to Display Character: &#304;]]/ARB, beta blocker, aldosterone blocker, diuretic or digoxin. Resting HR was 76±14 bpm and 68% of patients had a resting HR ≥70 bpm. KCCQ overall summary score (OSC) was found to be 75.7±13.2 in those in Q1, 65.5±20.8 in Q2, 64.4±20.6 in Q3 and 58.3±21.2 in Q4 (p=0.004) and KCCQ clinical summary score (CSS) was 80.4±15.7 in those in Q1, 70.0±22.4 in Q2, 69.9±21.9 in Q3 and 63.8±23.3 in Q4 (p=0.016). Also, there was a significant negative correlation between resting HR and OSC (p=0.008) or CSS (p=0.031). The distribution of NYHA-I patients for Q1, Q2, Q3 and Q4 were 40.7%, 22.8%, 23.8% and 12.7%, NYHA-II patients-30.8%, 23.1%, 27.2% and 18.9%, NYHA-III patients-21.2%, 23.9%, 24.3% and 30.6% and NYHA-IV patients-22.7%, 34.1%, 22.7% and 20.5%, respectively (p<0.001). Also, resting HR were found to gradually and significantly increase across NYHA categories (72.8±12 bpm in NYHA-I, 76.1±13 bpm in NYHA-II, 80.2±15 bpm in NYHA-III and 78.9±16 bpm in NYHA-IV, p<0.001). Conclusions: These results suggest that elevated resting HR in HF patients is associated with impaired HQoL and worse NYHA functional capacity.

scholarly journals Recruiting Endometrial Cancer Survivors to Studies Examining Lifestyle Behaviors and Quality of Life: Challenges Faced and Lessons Learned

2017 ◽  
Vol 33 (4) ◽  
pp. 857-864 ◽  
Author(s):  
Alexander R. Lucas ◽  
Brian C. Focht ◽  
David E. Cohn ◽  
Maryanna D. Klatt ◽  
Janet Buckworth
Keyword(s):  
Quality Of Life ◽  
Endometrial Cancer ◽  
Cancer Survivors ◽  
Lessons Learned ◽  
Lifestyle Behaviors ◽  
Life Challenges
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