Journal of Intellectual Disability - Diagnosis and Treatment

51-62

Authors: Ana Teresa Martins, Isa Carneiro, Sara Monteiro-Reis, João Lobo, Ana Luís, Carmen Carmen Jerónimo, Rui Henrique

In the context of translational cancer research, biobanks are key infrastructures that provide high quality biological samples, coupled with relevant clinical and pathological information. This role can only be successfully accomplished through the implementation of standardized procedures that ensure proper collection, handling, processing, storage and recording of tissue samples, following strict legal and ethical regulations. Biobank networking is fundamental for dissemination of good practices and to help in the establishment of new infrastructures that improve the assessment of heterogeneity among tumor types and across patient cohorts. Growing demands for large number of homogenously preserved tumor tissue samples can only be met through a more intense cooperation among biobanks, facilitated by networks that foster cooperation at international level. The potential of biobanks as fundamental tools for translational cancer research can only be achieved through a concerted effort from biobankers, researchers, legislators and tissue donors that may allow for improved sample exchange.

70-75

Authors: Carlos Moedas

Supporting health research has been a long-standing commitment for the European Union (EU). Over several Framework Programmes for Research and Innovation, the EU contributed to advancing scientific knowledge on intellectual disability and addressing the unmet needs of affected people, their families and carers. Bio-banking is instrumental to such research. This article presents the various streams through which the EU has helped developments in this area and highlights opportunities for the future.

82-86

Authors: Rivka Green, Jennifer Kalina, Krupa Pandey

Objective: To investigate the (1) incidence of anxiety and (2) association of anxiety with disease duration, depression, and age in an outpatient Multiple Sclerosis (MS) Center. Background: The incidence of anxiety varies in the literature but is estimated to affect 44.5% of people with MS. Anxiety can be a predictor of poor Quality of Life, especially relevant in progressive illnesses, such as MS. Though research has shown that patients newly diagnosed experience higher anxiety levels, the relationship between anxiety and disease duration is unclear. Since anxiety can be comorbid with depression in MS populations, it is relevant to establish its association in this setting. Finally, though anxiety usually increases in older age, research for this relationship in MS populations is inconclusive. Design/Methods: The commonly used Hospital Anxiety and Depression Scale, was distributed once to patients with MS over a 3 month period to assess anxiety and depression scores. MS disease duration and age were confirmed by neurologists. Results: Out of 160 patients with MS who completed the HADS, 19% reported abnormal anxiety, 14% reported borderline cases of anxiety, and 67% did not report anxiety. After following up on significant correlations, depression and younger age were related to higher anxiety levels, (R2=.35, F(4,144)=19.26, p<0.001). The standardized partial regression coefficients indicated 2 statistically significant predictors, depression (β=.55, p=<.001) and age (β=-.25, p=<.001). Discussion: 33% of patients reported symptoms of anxiety, emphasizing the need to focus on treating anxiety, specifically, early in their disease course. Clinicians may also want to recognize that elevated depression scores predicted anxiety. Lastly, in our cohort, the younger population reported higher anxiety, demonstrating that progressive illnesses may affect anxiety levels in younger populations more. Since approximately one third of patients with MS expressed anxiety symptoms, it is important to incorporate this into treatment plans

91-96

Authors: Nachum Vaisman, Rachel Regev, Lior Katalan, Yael Duani

The prevalence of obesity is reported to be higher among people with intellectual disabilities compared to the general population. Factors which were suggested to contribute to this increased prevalence include: low adherence to healthy diets, poor level of physical activity, intellectual disabilities and the lack of residential settings supporting independence. This study was designed to evaluate the additive effect of an intervention in the form of cognitive behavioral treatment (CBT) in a multi-strategy weight loss program for young adults with severe learning disabilities living in group residences in the community. The study population included 28 subjects (12 males) who were randomly assigned to one of two groups. Both groups had a weekly meeting with a dietician and were invited to take part in walking groups. One group (intervention group) had on top a weekly session of CBT. The results of our study indicate that adding a CBT component to a conventional program aiming at improved nutritional understanding (prudent diet, physical activity) of subjects with LD may improve the success for change in life habits, yet, in our study this effect was noticeable only on follow up few months after study termination. Neither group differences at baseline nor differences in the scoring for the locus of control questionnaire at baseline could predict this outcome. This delayed impact warrants further investigation.

110-119

Authors: Pamela Inglis, Hazel Powell, Angela Ridley, Sheila McQueen

Aims: A discussion of the treatment of people with an intellectual disability across healthcare and the modernisation of learning disability nursing. Background: Health inequalities are at the forefront of the collective mind of healthcare professionals and politicians, this paper explores why people with an intellectual disability have more health issues, die earlier and sometimes receive poor care, leading to unnecessary suffering and importantly, how this may change. Learning disability nursing has long been viewed as different and less valued, probably due to dual stigmatisation, or lack of understanding of specialist knowledge and skills required. This essential field of nursing is becoming a rare resource in our battle against health inequalities, yet internationally it is becoming recognised as crucial. Design:Discussion Paper. Data Sources:Literature and policy (1971 – 2012). Implications for Nursing:All nurses need to recognise their role in meeting the health care needs of people with an intellectual disability. Health care managers and commissioners should value the unique contribution of learning disability nurse in addressing health inequalities. Conclusion:Learning disabled people, their carers and professionals view the role of the learning disability nurse as central for effectively identifying and meeting health needs, reducing inequalities and barriers, supporting decisions around capacity, consent, best interests and advising and educating professionals. Recommendations for commissioning, nursing and services are made. Summary Statement: Why is this discussion paper needed? People with an intellectual disability have shorter life-spans and receive poor healthcare because of the barriers to good health developed in societies constructed by and for people without a disability. Internationally, the need for learning disability nurses, with their specific knowledge and skills, is being recognised in the battle against early and unnecessary deaths because of discrimination and health inequalities. Learning disability nurses and ‘Strengthening the Commitment’ lead on improving healthcare for learning disabled people and this paper raises the profile of this important health issue. What are the key findings? This discussion paper explores how most of the poor health experienced by people with an intellectual disability is about discriminating healthcare provision and crucially, not because the person has a disability. People with an intellectual disability have greater health needs than others and despite this, nonspecific health professionals often have scant understanding of their disability and health needs. Learning disability nursing as a vital resource has in recent years seen posts reducing in the NHS, with actual and commissioned numbers of registered learning disability nurses dropping. How should the findings be used to influence policy/practice/education/research? People with an intellectual disability and nonspecific staff often feel they are inadequately educated and lack appropriate skills for quality healthcare provision for learning disabled people; this has to change. Sir Johnathon Michael (2008) recommendation 1 advises that all health professionals be competent in supporting learning disabled people in a non-discriminatory way - universities and employers urgently need to adhere to this recommendation. Professionals, learning disabled people and carers state learning disability nurses are vital to acquiring human rights - increased international commissioning for learning disability nurses to enable quality healthcare, education and advice to professionals is pressing.