Response to ABAI Task Force on the Use of Contingent Electric Skin Shock.

In this article, the authors provide their response to the Association for Behavior Analysis International (2022) position statement on the use of contingent electric skin shock (CESS). In this response, we address concerns raised by the task force regarding limitations of the Zarcone et al. (2020) review article in which both methodological and ethical concerns were raised about the quality of research in the use of CESS with people with disabilities in the treatment of challenging behavior. We note that with the exception of the Judge Rotenberg Center in Massachusetts, no state or country currently supports the use of CESS as it is not recognized as the standard of care in any other program, school, or facility.

Reframing QoL assessment in persons with neurodevelopmental disorders.

The paper reviews the international literature on quality of life (QoL) for persons with neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal assessment. The application of the QoL approach to assessment procedures should be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect refers to characteristics of individual life that are shared with other people. The second aspect proceeds from the fact that each individual has a changing set of personal attributes that determine the subjective experience of life. In the third aspect the previous two are applied to the family that includes a person with NDD. Disability impacts the whole family and the determination of appropriate conceptualization of family outcomes requires an understanding of the impact of members with a disability on family QoL. At any level, it seems best to take a comprehensive approach to assessing QoL, integrating subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach is above all a way to explore the rich intricacies of personal quality of life. Such assessment may be used effectively with people with NDD, independently from the severity of their functioning impairment. Individuals with profound ID may express their inner states through consistent behavioural repertoires, which can be discerned by persons closest to them and validated by more independent others. Attention must be paid in using non-generic instruments, such as those that measure health-related QoL. Although they do focus on the individual person, they still support a theoretical perspective of QoL that has not departed significantly from the traditional medical approach. Currently available generic tools, although they have some common conceptual and evaluation characteristics, still show considerable differences in the areas to be included in "shared QoL", the dimensions used to evaluate "Individual QoL", and the role attributed to indicators of QoL. QoL assessment should not represent a classification of individuals, services or systems, but it should help provide, within service systems and organizations, a value system that is consistent with those values held by people with NDD.

Quality of life indicators for individuals with intellectual disabilities: extending current practice.

Quality of life is a social construct that is measured by what are considered to be its most appropriate indicators. Quality of life measurement in intellectual disability reflects a variety of indicators, often grouped under life domains. Subjective and objective methods of measuring indicators each have strengths and drawbacks, but it is currently considered best to use both methods. Indicators of quality of life that are common to all people have been measured to date, although indicators that are unique to individuals are highly useful for enhancing individual development and for applying person-centered practice. Aggregate quality of life data from individuals may not always be the best source of information for evaluating policies and service practices. A case is made for supplementing quality of life frameworks or adopting other frameworks for these purposes, with the Capabilities Framework offered as an example. Further, an argument is made that a pragmatic approach might best be taken to policy and program evaluation, whereby the key criterion for using a conceptual framework and set of indicators is its usefulness in effecting positive change in people's lives.

Video-assisted thoracic surgery systematic mediastinal nodal dissection and stage migration: impact on clinical pathway.

OBJECTIVES: The aim of this study is to investigate the role of routine systematic mediastinal nodal dissection (SND) performed during video-assisted thoracic surgery (VATS) major pulmonary resections (VMPRs) as a staging strategy for non-small-cell lung cancer (NSCLC), compared with preoperative staging by conventional positron emission tomography (PET) and computed tomography (CT) imaging. METHODS: All patients suspected of having early lung cancer (T1-2, N0-1 and M0) were staged preoperatively by CT/PET. During VMPR, all lymph nodes on the right side at stations 2-4, 7, 8, 9, 10 and 11 and on the left stations 4-6, 7, 8, 9, 10, 11 and 3 when indicated were dissected en bloc. Histology was provided on the paraffin-embedded nodes, and patients staged accordingly. Preoperative and postoperative stagings were compared. Stage migration and impact on clinical pathway were noted. Stage IIa and higher were referred for adjuvant chemotherapy. RESULTS: Between April 2007 and January 2011, 106 consecutive patients with suspected primary NSCLC proceeded to VMPR+SND. Histology confirmed NSCLC in 96 patients. Forty-five were men and 51 women. Median age was 68.6 (range 42.8-84.7) years. As many as 91 (94.8%) patients underwent lobectomy, three (3.1%) bilobectomy and two (2.1%) pneumonectomy. PET accurately correlated with SND histological diagnosis in 42 (43.8%) patients. The unexpected N2 disease in cN0-1 was 9/86 (10.5%). SND resulted in 25 stage migrations, upstaged 16 (16.6%) and down-staged nine (9.4%) patients. All upstagings were adenocarcinoma. Four (4.2%) PET-negative patients had multi-station N2 disease. SND resulted in changing the clinical pathway for 19 (20%) patients. Fourteen (14.6%) patients upstaged to qualify for chemotherapy, and 5/9 (5.2%) down-staged patients were saved the chemotherapy. There was no morbidity or mortality attributable to this added procedure. CONCLUSIONS: SND during VMPR is safe and should be routinely performed even when nodal metastases is considered unlikely. VATS-SND is more accurate than PET in staging the mediastinum for NSCLC. PET sensitivity is significantly reduced in adenocarcinoma and might result in stage migration. Adjuvant multidisciplinary treatment should be based on SND staging.

Imaging hypertrophic heart diseases with cardiovascular MR.

The assessment of ventricular hypertrophy is an increasingly common indication for cardiac MR (CMR) in every day clinical practice. CMR is useful to confirm the presence of hypertrophy and to help to define the underlying cause through a combination of a detailed assessment of ventricular function and tissue characterising sequences. As well as being a useful diagnostic tool, some CMR imaging features are of prognostic significance. In this article, we review the typical appearances of common forms of ventricular hypertrophy, focussing principally on left ventricular hypertrophy, and demonstrate the techniques that can be used to differentiate one form of hypertrophy from another.

Successful surgical correction of total anomalous pulmonary venous drainage in the sixth decade.

We report an unusual case of total anomalous pulmonary venous drainage (TAPVD), who was successfully treated by surgery at the age of 56 years. We believe that this is the oldest person in the English literature to undergo surgical correction of TAPVD. The pathophysiology and factors for prolonged survival are further discussed.

Cardiopulmonary bypass to facilitate excision of a giant pleural tumour.

A 55-year-old female developed dyspnoea following an elective hysteroscopy. A chest radiograph demonstrated a tissue density opacity occupying the right hemithorax. A CT scan suggested this was a tumour arising from the postero-lateral chest wall. Surgical resection was attempted; however, mobilisation of the tumour caused significant airway compromise. Cardiopulmonary bypass was used to facilitate oxygenation while the tumour was dissected and removed. Although cardiopulmonary bypass has been used as an adjunct to aid resection of tumours invading major vascular or upper airway structures, in this case CPB was used to aid mobilisation of a giant pleural tumour.

Quality of life for people with intellectual disabilities.

PURPOSE OF REVIEW: As the quality of life for the mental health of people with intellectual disabilities has been identified as a comprehensive indicator of intervention efficacy, scientific interest around it is shifting from theoretical issues to the ways of measurement. Nevertheless, the daily assessment still awaits the addressing of the questions of what the essence of quality of life is, how it is really or effectively measurable, by whom and for what purpose it is done. RECENT FINDINGS: The point well agreed upon is that the measurement should be based on both qualitative and quantitative variables from both subjective and objective positions. It should also be conducted through a comprehensive system that includes auto and hetero evaluations (if possible both by proxies and other external persons). Current instruments of assessment are too different from each other and refer to different levels of evaluation. This results in inappropriate applications to the assessment and care procedures. SUMMARY: A need for more methodologically rigorous studies exists, which is tracked in terms of applicability to daily practice and content effectiveness. At both health policy and front-line staff levels, assessment should aim at mobilizing and revaluing resources that can help a person to embark on or to continue a life-span curriculum of life skills.

What do Canadian seniors say supports their quality of life? Findings from a national participatory research study.

BACKGROUND: A national project investigated seniors' perceptions of the influences upon their quality of life. The seven participating cities were Montreal, Quebec City, Ottawa, Toronto, Regina, Vancouver and Whitehorse. The project focussed on policy decisions affecting the quality of life of seniors. It was a participatory study in which seniors controlled the direction and shape of the project in each city. METHODS: Focus groups and individual interviews with seniors and stakeholders. Data analysis used qualitative methods to see the world through the eyes of participants. Each project was committed to hearing the voices of seniors and their views on which issues were affecting the quality of their lives. RESULTS: Across the seven cities, seniors highlighted access to information, health care, housing, income security, safety and security, social contacts and networks, and transportation as key issues that affect the quality of life of seniors in Canada. CONCLUSIONS: The findings affirm the value of participatory activities that involve seniors working with other sectors as a productive policy-informing approach. The Seniors' Quality of Life projects demonstrate the conceptual power of the determinants of health perspective to understand seniors' quality of life issues. While seniors considered health care to be a continuing concern, they also recognized socio-economic issues as significantly affecting the quality of their lives.

Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: report of an international panel of experts.

In this article a number of issues involving the concept of quality of life as applied to persons with intellectual disabilities are summarized, and a number of agreed-upon principles regarding its conceptualization, measurement, and application are presented. We realize that the concepts and models presented in this article will vary potentially from country to country, and even from area to area within countries. The cross-cultural understanding of the concept of quality of life is in its infancy, and we hope that the discourses resulting from the material presented in this article will facilitate both cross-cultural understanding and collaborative work. The article reflects current thought about the conceptualization, measurement, and application of this increasingly important and widely used concept in the field of intellectual disabilities and sets the stage for its continuing development.