This paper discusses the relationships between quality of life and health by applying the discourses emerging in the health sector to other fields and other disciplines. These relationships constitute social representation based on subjective parameters (well-being, happiness, love, pleasure, personal satisfaction), and on objective ones such as satisfaction of basic needs and of the needs created by the degree of economical and social development of a given society. The text presents the main instruments which have been constructed during the last years for measuring quality of life, as well as the debate they cause. It also debates the semantic field where the representations and actions in favour of quality of life - such as the concept of development, democracy, quality, way and conditions of life - develop. In relation to the field of health, this article discusses the tendency to restrict the concept of quality of life to the biomedical area, associated with an economic assessment. It shows the variety of instruments created for measuring quality of life in accordance with the concept. Health promotion is considered one of the most relevant strategies in this field in order to avoid medical reductionism and to develop an interdisciplinary dialogue. It is argued that this proposal, however, still needs to be refined and tested in sanitary practices.

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Qualidade de vida e saúde: um debate necessário

Quality of life is the subject of much research. However it lacks an agreed theoretical basis. In studies with older populations(ill) health has been used as a proxy measure for quality of life (QoL). We have developed a needs satisfaction measure of QoL in early old age. Our measure has four ontologically grounded domains: conal, autonomy, pleasure, and self-realization. The measure was piloted with focus groups, a self-completion pilot, and cognitive interview testing. This produced a 22-item scale that was included in a postal questionnaire and sent to 286 people aged 65-75 years.A 92% response rate was achieved. The scale was reduced to 19 items on the basis of statistical analysis. The domains have Cronbach's alphas between 0.6 and 0.8. Correlations between the four domains range from 0.4 to 0.7. A second order factor analysis revealed a single latent QoL factor. The scores for the 19-item scale are well distributed along the range although they exhibit a slight negative skew. Concurrent validity was assessed using the Life Satisfaction Index--wellbeing. A strong and positive association was found between the two scales (r= 0.6, p = 0.01). The CASP-19 appears to be a useful scale for measuring QoL in older people.

A measure of quality of life in early old age: the theory, development and properties of a needs satisfaction model (CASP-19).

The quality of life (QL) concept has led to extensive scientific research and has been increasingly used by health care professionals treating a wide range of diseases. This paper addresses the historical use of the concept and specific issues linked to conceptual and methodological aspects of the QL construct within the health care context. Reviewing the literature, two aspects stand out: subjectivity and multidimensionality. In the methodological field, the construction and/or adaptation of QL measurement instruments appear as a significant trend. Theoretical and methodological efforts have helped clarify and improve the concept's adequacy. The QL construct is definitely interdisciplinary, encompassing contributions by different areas of knowledge and research, thereby improving its conceptual and methodological potential as a research instrument. Therefore, use of the concept can actually help improve both the quality and the integrated, multidimensional nature of health care from a perspective that views the latter as a basic citizen's right.

https://www.scielosp.org/pdf/csp/2004.v20n2/580-588/pt

Qualidade de vida e saúde: aspectos conceituais e metodológicos

The purpose of this paper is to summarize the best evidence regarding the impact of providing patient-reported outcomes (PRO) information to health care professionals in daily clinical practice. Systematic review of randomized clinical trials (Medline, Cochrane Library; reference lists of previous systematic reviews; and requests to authors and experts in the field). Out of 1,861 identified references published between 1978 and 2007, 34 articles corresponding to 28 original studies proved eligible. Most trials (19) were conducted in primary care settings performed in the USA (21) and assessed adult patients (25). Information provided to professionals included generic health status (10), mental health (14), and other (6). Most studies suffered from methodologic limitations, including analysis that did not correspond with the unit of allocation. In most trials, the impact of PRO was limited. Fifteen of 23 studies (65%) measuring process of care observed at least one significant result favoring the intervention, as did eight of 17 (47%) that measured outcomes of care. Methodological concerns limit the strength of inference regarding the impact of providing PRO information to clinicians. Results suggest great heterogeneity of impact; contexts and interventions that will yield important benefits remain to be clearly defined.

/pdf/the-impact-of-measuring-patient-reported-outcomes-in-35spcocd6g.pdf

The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature.

The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory?

A large amount of quality of life (QoL) information has been and is being collected in the oncology setting but it is unclear how such data influence decisions about the management of individual patients. A questionnaire designed specifically for the study was mailed to 260 senior oncologists to investigate how QoL data are being used outside the context of cancer clinical trials; replies were received from 154 (59%). Approximately 80% believed QoL information should be collected prior to the commencement of treatment, but less than 50% actually did so. Similarly, less than 50% assessed QoL as a method of monitoring the responses to treatment even when the treatment goal was palliation. The barriers to collecting such data were time and resource constraints, perceived lack of an appropriate instrument and a belief that QoL assessments were unnecessary. Other than making a subjective assessment based on examination and history, 73 (47%) used either standardized questionnaires or a system derived in their unit to assess the QoL of their patients. Given an appropriate instrument the majority believed that QoL data could be collected on a routine basis. The main barriers to collecting QoL data are logistic and the challenge remains to develop a method of collecting and analysing QoL information in a manner which enhances decision making.

The use of quality of life data in clinical practice

Epidemiological studies have demonstrated a causal link between excessive sun exposure and skin cancer, leading to the development of primary and secondary prevention programmes. In countries where there has been a significant increase in the incidence of melanoma, large amounts of time, effort and money have been spent on the design and implementation of programmes aimed at increasing knowledge about the risks of excessive sun exposure, changing attitudes about the effect of tanning, promoting sun protective behaviours, and modifying sun exposing behaviours. The majority of the evaluations of intervention programmes have focused on changes in knowledge levels and attitudes, with comparatively little attention paid to the impact on sun-related beha-

Jenny Morris

Papers

The use of quality of life data in clinical practice

Sun exposure modification programmes and their evaluation: a review of the literature