Pedro Lopes Ferreira

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Cross-cultural adaptation and validation of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score (KOOS).

OBJECTIVE The objective of this study was to translate and culturally adapt the Knee injury and Osteoarthritis Outcome Score (KOOS) to the Portuguese language and to test its reliability, validity, floor/ceiling effects and responsiveness. METHODS This new version was obtained with forward/backward translations, consensus panels and a pre-test. The Portuguese KOOS and Medical Outcomes Study - 36 item Short Form (SF-36) questionnaires, visual analogue scales (VAS) of pain, disability and discomfort, and a form for the characteristics of the patients were applied to 223 subjects with knee osteoarthritis (OA). RESULTS Reliability was acceptable with Cronbachs alpha coefficients between 0.77 and 0.95, and intraclass correlation coefficients (ICC) ranging from 0.82 to 0.94 for the KOOS subscales. Construct validity was supported by the confirmation of six of the seven predefined hypotheses involving expected correlations between KOOS subscales, SF-36 subscales and VAS. An additional predefined hypothesis was also confirmed with the subjects that need walking aids obtaining lower scores in all five KOOS subscales (P< or =0.001). Floor/ceiling effects were considered to be not present, except for the subscale function in sport and recreation (33.6% of the subjects reported worst possible score). Responsiveness to 4 weeks of physical therapy was demonstrated with standardized effect size between 0.78 and 1.08, and standardized response mean ranging from 0.83 to 1.37 for the KOOS subscales. CONCLUSION The Portuguese KOOS evidenced acceptable psychometric characteristics.

GPs’ views on involvement of older patients: an European qualitative study

Involvement of older patients in general practice care is regarded as important, but is not widespread. To determine specific barriers to the involvement of older patients in general practice care and to identify variations between countries, we performed an international comparative study based on qualitative interviews with 233 general practitioners (GPs) in 11 countries. Most GPs thought that involving older patients had positive outcomes. GPs saw patient involvement as a process taking place solely during consultations. The main barrier for GPs was lack of time. Barriers related to older patients were their feelings of respect for doctors, their lack of experience in being involved and possible mental and physical impairments. To conclude, increasing involvement of older patients is not easy and will only be effective when GPs have adopted a more developed concept of patient involvement and are supported with the different methods for achieving this. The range of appropriate interventions may be similar in all countries.

EAPC White Paper on outcome measurement in palliative care: Improving practice, attaining outcomes and delivering quality services – Recommendations from the European Association for Palliative Care (EAPC) Task Force on Outcome Measurement:

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics.

Priorities for treatment, care and information if faced with serious illness: a comparative population-based survey in seven European countries.

Background: Health-care costs are growing, with little population-based data about people’s priorities for end-of-life care, to guide service development and aid discussions. Aim: We examined variations in people’s priorities for treatment, care and information across seven European countries. Design: Telephone survey of a random sample of households; we asked respondents their priorities if ‘faced with a serious illness, like cancer, with limited time to live’ and used multivariable logistic regressions to identify associated factors. Setting/participants: Members of the general public aged ≥16 years residing in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. Results: In total, 9344 individuals were interviewed. Most people chose ‘improve quality of life for the time they had left’, ranging from 57% (95% confidence interval: 55%–60%, Italy) to 81% (95% confidence interval: 79%–83%, Spain). Only 2% (95% confidence interval: 1%–3%, England) to 6% (95% confidence interval: 4%–7%, Flanders) said extending life was most important, and 15% (95% confidence interval: 13%–17%, Spain) to 40% (95% confidence interval: 37%–43%, Italy) said quality and extension were equally important. Prioritising quality of life was associated with higher education in all countries (odds ratio = 1.3 (Flanders) to 7.9 (Italy)), experience of caregiving or bereavement (England, Germany, Portugal), prioritising pain/symptom control over having a positive attitude and preferring death in a hospice/palliative care unit. Those prioritising extending life had the highest home death preference of all groups. Health status did not affect priorities. Conclusions: Across all countries, extending life was prioritised by a minority, regardless of health status. Treatment and care needs to be reoriented with patient education and palliative care becoming mainstream for serious conditions such as cancer.

To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe

Background: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand. Aim: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. Design: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. Results: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93–2.77), (odds ratio = 1.33–1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14–1.41), (odds ratio = 1.30, 95% confidence interval = 1.20–1.42)); younger-middle age ((30–59 years: odds ratio = 1.24–1.40), (50–59 years: odds ratio = 1.23, 95% confidence interval = 1.04–1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49–1.58), (odds ratio = 1.35–1.53)). Those with increased financial hardship (odds ratio = 0.64–0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60–0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54–0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18–1.53). Conclusions: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

How consistent are health utility values

The use of preference-based generic instruments to measure the health-related quality of life of a general population or of individuals suffering from a specific disease has been increasing. However, there are several discrepancies between instruments in terms of utility results. This study compares SF-6D and EQ-5D when administered to patients with cataracts and aims at explaining the differences. Agreement between EQ-5D and SF-6D health state classifications was assessed by correlation coefficients. Simple correspondence analysis was used to assess the agreement among the instrument’s descriptive systems and to investigate similarities between dimensions’ levels. Cluster analysis was used to classify SF-6D and EQ-5D levels into homogeneous groups. There was evidence of floor effects in SF-6D and ceiling effects in EQ-5D. Comparisons of means showed that SF-6D values exceeded EQ-5D values. Agreement between both instruments was high, especially between similar dimensions. However, different valuation methods and scoring algorithms contributed to the main differences found. We suggest that one or both instruments should be revised, in terms of their descriptive systems or their scoring algorithms, in order to overcome the weakness found.

A portuguese value set for the SF-6D

OBJECTIVES The SF-6D is a preference-based measure of health derived from the SF-36 that can be used for cost-effectiveness analysis using cost-per-quality adjusted life-year analysis. This study seeks to estimate a system weight for the SF-6D for Portugal and to compare the results with the UK system weights. METHODS A sample of 55 health states defined by the SF-6D has been valued by a representative random sample of the Portuguese population, stratified by sex and age (n = 140), using the Standard Gamble (SG). Several models are estimated at both the individual and aggregate levels for predicting health-state valuations. Models with main effects, with interaction effects and with the constant forced to unity are presented. Random effects (RE) models are estimated using generalized least squares (GLS) regressions. Generalized estimation equations (GEE) are used to estimate RE models with the constant forced to unity. Estimations at the individual level were performed using 630 health-state valuations. Alternative functional forms are considered to account for the skewed distribution of health-state valuations. RESULTS The models are analyzed in terms of their coefficients, overall fit, and the ability for predicting the SG-values. The RE models estimated using GLS and through GEE produce significant coefficients, which are robust across model specification. However, there are concerns regarding some inconsistent estimates, and so parsimonious consistent models were estimated. There is evidence of under prediction in some states assigned to poor health. The results are consistent with the UK results. CONCLUSION The models estimated provide preference-based quality of life weights for the Portuguese population when health status data have been collected using the SF-36. Although the sample was randomly drowned findings should be treated with caution, given the small sample size, even knowing that they have been estimated at the individual level.

Reliability, validity and responsiveness of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score – Physical Function Short-form (KOOS-PS)

OBJECTIVE To test the reliability, validity and responsiveness of the Portuguese version of the Knee injury and Osteoarthritis Outcome Score--Physical Function Short-form (KOOS-PS). METHODS The Portuguese full KOOS and Medical Outcomes Study e 36 item Short-Form (SF-36) questionnaires, and a form of individual characteristics of the patients were applied to 85 subjects with knee osteoarthritis (OA). RESULTS Cronbachs alpha coefficient was 0.89 and intraclass correlation coefficient (ICC) was 0.85, certifying that KOOS-PS reliability was acceptable. Construct validity was supported by the confirmation of the five predefined hypotheses involving expected correlations between KOOS-PS scale, KOOS subscales and SF-36 subscales. An additional predefined hypothesis was also confirmed with the subjects that need walking aids obtaining higher KOOS-PS scale scores (P = 0.011). Responsiveness to 4 weeks of conventional physical therapy treatments and to a 6-week health education and exercise program was demonstrated with a standardized effect size of 0.88 and 0.50, and a standardized response mean of 1.21 and 0.73, respectively. CONCLUSION The Portuguese KOOS-PS evidenced acceptable psychometric characteristics.

‘Burden to others’ as a public concern in advanced cancer: a comparative survey in seven European countries

BackgroundEurope faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this.MethodsTelephone survey with 9,344 individuals aged ≥16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As ‘burden to others’ showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression.ResultsOverall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80).ConclusionsWhen imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.