News nr. 28 | August 2012
Science Space
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Palliative Care, Quality of Life and Dementia


Helena Bárrios
Hospital do Mar
helenabarrios@gmail.com  



The core objective of Palliative Care is to intervene in chronic, incurable and progressive disease and improve the quality of life (qol) of patients and their families through prevention and relief of suffering and early detection, systematic assessment and treatment of pain and other physical, psychosocial and spiritual problems (WHO, 2010). 

Curative and palliative interventions are not mutually exclusive. In patients with the profile described above, palliation must be offered from an early stage in an integrated way and in addition to curative intervention for enhanced quality of care provided to patients and their families (Murray, Kendall, Boyd, & Sheikh, 2005). 

It is a specialized area of intervention that requires multidisciplinary teams with diverse high technical skills and specific advanced training (Portuguese Association of Palliative Care, 2006). 

The Master Degree in Palliative Care offered by the Faculty of Medicine of the University of Lisbon (FMUL) is pioneer in Portugal in the advanced training of health professionals, combining practical guidance with high scientific content and enhancement of the research component. It offers a comprehensive curriculum, fosters multidisciplinarity and has internationally renowned Portuguese and foreign trainers. Thus, this was a natural choice for me when I felt the need to increase my knowledge in this field. 

I was able to write a master’s thesis in a field that is relevant for my clinical practice as a doctor in a geriatric hospital that has a unit specializing in dementia. 

There are various areas that could potentially be improved in palliative care, and the study of qol is a priority. 

The World Health Organization defines qol as “an individual’s perception of their position in life in the context of the culture and value system in which they live and in relation to their goals, expectations and standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships and personal beliefs and their relationship to salient features of their environment” (WHOQOL Group, 1997). 

Given the pathological characteristics of dementia, it is necessary to adapt this theoretical construct, a work initially done by Lawton (Lawton, 1994) and subsequently developed by several research groups. Despite the cognitive impairment in patients with dementia, all models value the internal perspective of patients with regard to their own qol and their own ability to adapt, acknowledging the influence of humour as a core aspect. 

Due to its appeal as a result of the challenges it poses for this specific disease, I chose to study qol in patients suffering from dementia, an area that is still not widely known in Portugal. Given the absence of a specific scale for the study of qol related to health in patients with dementia in Portugal, I proposed to translate, adapt and validate the QOL-AD scale (Logsdon, Gibbons, McCurry, & Teri, 2002) for Portugal. This is a particularly interesting instrument because it evaluates qol as reported by the patient and interpreted by the caregiver. I conducted this work under the supervision of Professor Alexandre de Mendonça, which allowed a very fruitful synergy with the Dementia Group of the Institute of Molecular Medicine. 

The translation and adaptation process followed national and international recommendations (Scientific Advisory Committee of the Medical Outcomes Trust, 2002). When a version of the scale with adequate face and content validity was obtained, its psychometric properties were subsequently evaluated. 

A qualitative study involving 104 patient/caregiver dyads was conducted in patients diagnosed with mild cognitive impairment or mild to moderate dementia (MMSE=10) caused by Alzheimer’s disease or vascular dementia, and their caregivers were involved. The mean age of patients in the sample is 77 years, of whom 68% are women and 53% live in homes. 

Referring only to the most relevant results of the study, it must be noted that the scale proved to be of rapid implementation. The acceptability and reliability psychometric properties were robust and overlapped the original study, which also reinforces the belief that patients with dementia have the capacity to evaluate their own qol. 

As in most international studies, we found that the qol perceived by the patient is greater than the one attributed by the caregiver.
In the absence of a gold standard for qol in dementia, we studied the validity criteria concurrent with other constructs. As described in international literature, we found several factors associated with qol ratings by patients and their caregivers. In the case of patients, there is correlation of lower qol in the presence of depression, lower and less intense life satisfaction with functionality and the existence of co-morbidities. The classification given by caregivers correlated with the presence of neuropsychiatric symptoms, caregivers’ burden, caregivers’ depression, cognitive condition of patients (which is not correlated with the qol score given by patients), and, more tenuously, with patients’ depression and instrumental activities of everyday living. These differences strengthen the complexity of qol studies in patients with dementia, and the need to comprehensively evaluate patients and their caregivers in order to institute adequate and effective measures to improve qol. 

We have also confirmed the discriminant validity of a group of patients without cognitive impairment and their caregivers, the latter giving higher qol scores. 

Completing the Master in Palliative Care has enabled me to interact with distinct experiences in this field, acquire new theoretical and practical knowledge, be in contact with trainers with high scientific skills, be responsible for conducting a scientific work through all its stages (ranging from designing the protocol to publication), and benefit from excellent supervision while part of a dynamic research group. The end result was a personal and professional capital gain, and I hope that it has given a valuable contribution to the Portuguese clinical and scientific community.

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Bibliography

Associação Portuguesa de Cuidados Paliativos. (2006). Organização de Serviços em Cuidados Paliativos: Recomendações da APCP. Associação Portuguesa de Cuidados Paliativos. 

Lawton, M. P. (1994). Quality of life in Alzheimer´s disease. Alzheimer Dis Assoc Disord, 8(Suppl 3), pp. 138-50.
Logsdon, R., Gibbons, L., McCurry, S., & Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosom Med, 64, pp. 510-19. 

Murray, S., Kendall, M., Boyd, K., & Sheikh, A. (2005). Illness trajectories and palliative care. BMJ, 330, pp. 1007-11. 

Scientific Advisory Committee of the Medical Outcomes Trust. (2002). Assessing health status and quality-of-life instruments: Attributes and review criteria. Qual Life Res, 11, pp. 193-205. 

WHO. (2010). WHO definition of palliative care. Retrieved Janeiro 5, 2012, from http://www.who.int/cancer/palliative/definition/en 

WHOQOL Group. (1997). Measuring quality of life. Geneva: The World Health Organization.
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