Parental projections of developmental outcome, quality of life and coping in children who require neonatal intensive care

Aux soins intensifs néonataux, les professionnels et les parents évaluent le pronostic du développement et de la qualité de vie (QdV). Le but de cette thèse est de comprendre comment les parents prédisent la QdV future de leurs enfants. Cette étude qualitative basée sur la théorisation ancrée comprend dix entrevues avec des parents. Les résultats indiquent que le pronostic développemental influence les prédictions parentales de QdV, mais il n’est pas suffisant, car la QdV est multidimensionnelle. Les parents utilisent des mécanismes d’adaptation pour gérer la maladie et l’hospitalisation de leur enfant. Ceux qui pensent qu’ils, et leur enfant, seront capables de s’adapter à un mauvais état développemental, prévoient une QdV réévaluée. Le pronostic neuro-développemental et la QdV future ne sont pas facilement estimés et les professionnels doivent en être conscients. Aider les parents à identifier des mécanismes d’adaptation peut les amener à estimer un meilleur pronostic de la QdV.

Tha contribution of home-based technology to older people's quality of life in extra care housing

Background: British government policy for older people focuses on a vision of active ageing and independent living. In the face of diminishing personal capacities, the use of appropriate home-based technology (HBT) devices could potentially meet a wide range of needs and consequently improve many aspects of older people's quality of life such as physical health, psychosocial well-being, social relationships, and their physical or living environment. This study aimed to examine the use of HBT devices and the correlation between use of such devices and quality of life among older people living in extra-care housing (ECH).  Methods: A structured questionnaire was administered for this study. Using purposive sampling 160 older people living in extra-care housing schemes were selected from 23 schemes in England. A face-to-face interview was conducted in each participant's living unit. In order to measure quality of life, the SEIQoL-Adapted and CASP-19 were used.  Results: Although most basic appliances and emergency call systems were used in the living units, communally provided facilities such as personal computers, washing machines, and assisted bathing equipment in the schemes were not well utilised. Multiple regression analysis adjusted for confounders including age, sex, marital status, living arrangement and mobility use indicated a coefficient of 1.17 with 95% CI (0.05, 2.29) and p = 0.04 [SEIQoL-Adapted] and 2.83 with 95% CI (1.17, 4.50) and p = 0.001 [CASP-19].  Conclusions: The findings of the present study will be value to those who are developing new form of specialised housing for older people with functional limitations and, in particular, guiding investments in technological aids. The results of the present study also indicate that the home is an essential site for developing residential technologies.

Quality of life and its association with cardiovascular risk factors in a community health care program population

OBJECTIVE: To evaluate quality of life in a population that attended a specific community event on health care education, and to investigate the association of their quality of life with the presence of cardiovascular risk factors INTRODUCTION: Interest in health-related quality of life is growing worldwide as a consequence of increasing rates of chronic disease. However, little is known about the association between quality of life and cardiovascular risk factors. METHODS: This study included 332 individuals. Demographics, blood pressure, body mass index, and casual glycemia were evaluated. The brief version of the World Health Organization Quality of Life questionnaire on quality of life was given to them. The medians of the scores obtained for the physical, psychological, emotional, and environmental domains were used as cutoffs to define higher and lower scores. A multinomial logistic regression model was used to define the parameters associated with lower scores. RESULTS: Diabetes mellitus, dyslipidemia, and obesity were associated with lower scores in the physical domain. Dyslipidemia was also associeted with lower scores in the psychological domain. Male gender and regular physical activity had protective effects on quality of life. Aging was inversely associated with decreased quality of life in the environmental domain. CONCLUSION: The presence of cardiovascular risk factors is related to a decreased quality of life. Conversely, male gender and regular physical activity had protective effects on quality of life. These findings suggest that exercising should be further promoted by health-related public programs, with a special focus on women.

The variability and predictors of quality of AIDS care services in Brazil

Background: Since establishing universal free access to antiretroviral therapy in 1996, the Brazilian Health System has increased the number of centers providing HIV/AIDS outpatient care from 33 to 540. There had been no formal monitoring of the quality of these services until a survey of 336 AIDS health centers across 7 Brazilian states was undertaken in 2002. Managers of the services were asked to assess their clinics according to parameters of service inputs and service delivery processes. This report analyzes the survey results and identifies predictors of the overall quality of service delivery.Methods: The survey involved completion of a multiple-choice questionnaire comprising 107 parameters of service inputs and processes of delivering care, with responses assessed according to their likely impact on service quality using a 3-point scale. K-means clustering was used to group these services according to their scored responses. Logistic regression analysis was performed to identify predictors of high service quality.Results: The questionnaire was completed by 95.8% (322) of the managers of the sites surveyed. Most sites scored about 50% of the benchmark expectation. K-means clustering analysis identified four quality levels within which services could be grouped: 76 services (24%) were classed as level 1 (best), 53 (16%) as level 2 (medium), 113 (35%) as level 3 (poor), and 80 (25%) as level 4 (very poor). Parameters of service delivery processes were more important than those relating to service inputs for determining the quality classification. Predictors of quality services included larger care sites, specialization for HIV/AIDS, and location within large municipalities.Conclusion: The survey demonstrated highly variable levels of HIV/AIDS service quality across the sites. Many sites were found to have deficiencies in the processes of service delivery processes that could benefit from quality improvement initiatives. These findings could have implications for how HIV/AIDS services are planned in Brazil to achieve quality standards, such as for where service sites should be located, their size and staffing requirements. A set of service delivery indicators has been identified that could be used for routine monitoring of HIV/AIDS service delivery for HIV/AIDS in Brazil (and potentially in other similar settings).

Burden of care and its impact on health-related quality of life of caregivers of individuals with spinal cord injury

Objective: to analyze the impact and burden of care on the Health-Related Quality of Life (HRQOL) of caregivers of individuals with a spinal cord injury (SCI). Method: cross-sectional observational study carried out by reviewing medical records and applying questionnaires. The scale Short Form 36 (SF-36) was used to assess HRQOL and the Caregiver Burden Scale (CBScale) for care burden. Results were analyzed quantitatively. Most patients with SCIs were male, aged 35.4 years old on average, with a predominance of thoracic injuries followed by cervical injuries. Most caregivers were female aged 44.8 years old on average. Results: tetraplegia and secondary complications stand out among the clinical characteristics that contributed to greater care burden and worse HRQOL. Association between care burden with HRQOL revealed that the greater the burden the worse the HRQOL. Conclusion: Preventing care burden through strategies that prepare patients for hospital discharge, integrating the support network, and enabling access to health care services are interventions that could minimize the effects arising from care burden and contribute to improving HRQOL.

Evaluation of quality of life in a palliative care context: an integrative literature review

The use of scales that have been validated and standardized for different cultures is very useful for identifying demands in the field of Palliative Care and implementing the most appropriate care. This integrative literature review focuses on instruments assessing the Quality of Life of patients under Palliative Care through a journal search in electronic databases. The study consisted of 49 papers identified in Medline/PubMed, of which 18 met the inclusion criteria previously defined. Information concerning the selected studies is presented and later categorized, with a greater emphasis on the analysis of the psychometric properties of validations of the Palliative Outcome Scale, conducted in three countries. This review enabled the identification of instruments already developed and validated for different cultures, increasing the possibility of knowledge in the field.

Differences in the quality of interpersonal care in complementary and conventional medicine

The study was part of a nationwide evaluation of complementary and alternative medicine (CAM) in Swiss primary care. The aim of the study was to compare patient-physician relationships and the respective patient-reported relief of symptoms between CAM and conventional primary care (COM).

Quality of life 9 years after an intensive care unit stay: A long-term outcome study

The purpose of the study was to assess long-term mortality after an intensive care unit (ICU) stay and to test the hypotheses that (1) quality of life improves over time and (2) predictions of outcome made by caregivers during an ICU stay are reliable.

Quality of life of survivors of paediatric intensive care

OBJECTIVE: The mortality rate in paediatric intensive care units (PICU) has fallen over the last two decades. More advanced treatment is offered to children with life-threatening disease and there is substantial interest in knowing whether long term outcome and quality of life after intensive care are acceptable. SETTING: 12-bed paediatric and neonatal intensive care unit. INTERVENTION: Prospective follow-up study with telephone interview 1 and 2 years after discharge. METHODS: Four domains of quality of life (physical function, role function, social-emotional function and health problem) were recorded by calculating the health state classification (HSC) index. Outcome was classified good (HSC 1.0-0.7), moderate (HSC 0.69-0.3), poor (HSC 0.29-0) and very poor (HSC <0). RESULTS: 661 patients were admitted to the PICU in the year 2001 with a mortality within the unit of 3.9%. Over 2 years follow-up there were 21 additional deaths (3.2%). 574 patients could be followed up after 1 year and 464 patients after 2 years. After two years the outcome was good in 77%, moderate in 15% and poor in 8%. Patients with respiratory disease had the best outcome, similar to those admitted for neurological and medical reasons. Patients admitted for postoperative care and for cardiovascular disease had a poorer quality of life. 31% of the children had preexisting health care problems and 21% of all patients had new chronic disease after intensive care. CONCLUSION: The majority of survivors admitted to the PICU have a good outcome. The overall mortality rate doubled if assessed two years after discharge.

The lower quality of preventive care among forced migrants in a country with universal healthcare coverage

OBJECTIVE To assess the association between socio-demographic factors and the quality of preventive care and chronic care of cardiovascular (CV) risk factors in a country with universal health care coverage. METHODS Our retrospective cohort assessed a random sample of 966 patients aged 50-80years followed over 2years (2005-2006) in 4 Swiss university primary care settings (Basel/Geneva/Lausanne/Zürich). We used RAND's Quality Assessment Tools indicators and examined recommended preventive care among different socio-demographic subgroups. RESULTS Overall patients received 69.6% of recommended preventive care. Preventive care indicators were more likely to be met among men (72.8% vs. 65.4%; p<0.001), younger patients (from 71.0% at 50-59years to 66.7% at 70-80years, p for trend=0.03) and Swiss patients (71.1% vs. 62.7% in forced migrants; p=0.001). This latter difference remained in multivariate analysis adjusted for gender, age, civil status and occupation (OR 0.68; 95% CI 0.54-0.86). Forced migrants had lower scores for physical examination and breast and colon cancer screening (all p≤0.02). No major differences were seen for chronic care of CV risk factors. CONCLUSION Despite universal healthcare coverage, forced migrants receive less preventive care than Swiss patients in university primary care settings. Greater attention should be paid to forced migrants for preventive care.

QUALITY OF MATERNITY CARE IN RURAL TEXAS (MEXICAN-AMERICAN)

The purpose of the study was to describe regionalized systems of perinatal care serving predominantly low income Mexican-American women in rural underserved areas of Texas. The study focused upon ambulatory care; however, it provided a vehicle for examination of the health care system. The questions posed at the onset of the study included: (1) How well do regional organizations with various patterns of staffing and funding levels perform basic functions essential to ambulatory perinatal care? (2) Is there a relationship between the type of organization, its performance, and pregnancy outcome? (3) Are there specific recommendations which might improve an organization's future performance?^ A number of factors--including maldistribution of resources and providers, economic barriers, inadequate means of transportation, and physician resistance to transfer of patients between levels of care--have impeded the development of regionalized systems of perinatal health care, particularly in rural areas. However, studies have consistently emphasized the role of prenatal care in the early detection of risk and treatment of complications of pregnancy and childbirth, with subsequent improvement in pregnancy outcomes.^ This study has examined the "system" of perinatal care in rural areas, utilizing three basic regional models--preventive care, limited primary care, and fully primary care. Information documented in patient clinical records was utilized to compare the quality of ambulatory care provided in the three regional models.^ The study population included 390 women who received prenatal care in one of the seven study clinics. They were predominantly hispanic, married, of low income, with a high proportion of teenagers and women over 35. Twenty-eight percent of the women qualified as migrants.^ The major findings of the study are listed below: (1) Almost half of the women initiated care in the first trimester. (2) Three-fourths of the women had or exceeded the recommended number of prenatal visits. (3) There was a low rate of clinical problem recognition. Additional follow-up is needed to determine the reasons. (4) Cases with a tracer condition had significantly more visits with monitoring of the clinical condition. (5) Almost 90% of all referrals were completed. (6) Only 60% of mothers had postpartum follow-up, while almost 90% of their newborns received care. (7) The incidence of infants weighing 2500 grams or less was 4.2%. ^

Costs and quality of medication reconciliation practice in primary care clinics

Medication reconciliation, with the aim to resolve medication discrepancy, is one of the Joint Commission patient safety goals. Medication errors and adverse drug events that could result from medication discrepancy affect a large population. At least 1.5 million adverse drug events and $3.5 billion of financial burden yearly associated with medication errors could be prevented by interventions such as medication reconciliation. This research was conducted to answer the following research questions: (1a) What are the frequency range and type of measures used to report outpatient medication discrepancy? (1b) Which effective and efficient strategies for medication reconciliation in the outpatient setting have been reported? (2) What are the costs associated with medication reconciliation practice in primary care clinics? (3) What is the quality of medication reconciliation practice in primary care clinics? (4) Is medication reconciliation practice in primary care clinics cost-effective from the clinic perspective? Study designs used to answer these questions included a systematic review, cost analysis, quality assessments, and cost-effectiveness analysis. Data sources were published articles in the medical literature and data from a prospective workflow study, which included 150 patients and 1,238 medications. The systematic review confirmed that the prevalence of medication discrepancy was high in ambulatory care and higher in primary care settings. Effective strategies for medication reconciliation included the use of pharmacists, letters, a standardized practice approach, and partnership between providers and patients. Our cost analysis showed that costs associated with medication reconciliation practice were not substantially different between primary care clinics using or not using electronic medical records (EMR) ($0.95 per patient per medication in EMR clinics vs. $0.96 per patient per medication in non-EMR clinics, p=0.78). Even though medication reconciliation was frequently practiced (97-98%), the quality of such practice was poor (0-33% of process completeness measured by concordance of medication numbers and 29-33% of accuracy measured by concordance of medication names) and negatively (though not significantly) associated with medication regimen complexity. The incremental cost-effectiveness ratios for concordance of medication number per patient per medication and concordance of medication names per patient per medication were both 0.08, favoring EMR. Future studies including potential cost-savings from medication features of the EMR and potential benefits to minimize severity of harm to patients from medication discrepancy are warranted. ^

Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review

Objective: To investigate whether for patients with incurable cancer comprehensive home care programmes are more effective than standard care in maintaining the patients’ quality of life and reducing their “readmission time” (percentage of days spent in hospital from start of care till death).