Development and Validation of the QUALI-PALLI-FAM Questionnaire for Assessing Relatives' Perception of Quality of Inpatient Palliative Care: A Prospective Cross-Sectional Survey.

CONTEXT: Relatives of patients receiving palliative care are at risk for psychological and physical distress, and their perception of quality of care can influence patients' quality of life. OBJECTIVES: The purpose of this study was to develop and validate the QUALI-PALLI-FAM questionnaire (QUAlity of PALLIative car from FAMilies' perspective) to measure families' perception of and satisfaction with palliative care. METHODS: An exploratory factor analysis was conducted, and we evaluated the questionnaire's internal consistency using Cronbach's alpha, its stability across various strata, and the correlation between the QUALI-PALLI-FAM (factors, total score, and global satisfaction) and the total score of the FAMCARE (FAMily satisfaction with CARE) questionnaire. RESULTS: This multicentric prospective cross-sectional survey was conducted in seven French hospitals, namely, three palliative care units and four standard medical units with a mobile palliative care team. The questionnaire was completed by 170 relatives of patients (more than 90% of patients had advanced cancer). The final questionnaire included 14 items across three domains: organization of care and availability of caregivers, medical information provision, and confidence and involvement of relatives. Internal consistency was good for all subscales (Cronbach's α = 0.74-0.86). Our questionnaire was stable across various strata: age and gender (patients and relatives), Palliative Performance Scale scores, and care settings. The QUALI-PALLI-FAM total score was correlated with the total FAMCARE score. CONCLUSION: The QUALI-PALLI-FAM appears to be a valid, reliable, and well-accepted tool to explore relatives' perception of quality of inpatient palliative care and complements the QUALI-PALLI-PAT questionnaire. Further testing is required in various settings and countries.

Development and validation of a French questionnaire concerning patients' perspectives of the quality of palliative care: the QUALI-PALLI-Patient.

BACKGROUND: Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. METHODS: Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. RESULTS: A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers' listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach's α 0.5-0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40-50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms' severity and impact on life. Each subscale, except "possibility to refuse", correlated with general satisfaction. CONCLUSIONS: Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. TRIAL REGISTRATION: clinicaltrials.gov NCT02814682 , registration date 28.6.2016.

[Collaboration between nursing teams and users to improve the quality of the care provision]. / Collaboration des équipes de soins avec les usagers pour améliorer la qualité de l'offre de soins.

The place of users in the health care system has evolved towards their greater involvement in health institutions. International models have led France to recognise patients' experience and to develop a partnership with caregivers. Adapted methods favour the emergence and consideration of the opinion of those receiving the care, help to open up the debate and develop actions more in line with patients' needs.

[Compassionate care, a perpetual quest]. / La bientraitance, une quête perpétuelle.

The French Federation of Regional and Territorial Bodies for the Improvement of Health Practices and Organisations and the French National Authority for Health have produced a guide and tools devoted to the promotion of compassionate care in health institutions. The assessment of the use of the guide has shown increasing awareness of compassionate care on the part of institutions but a paradoxical exclusion of users from the approaches undertaken. An analysis of the reasons for this partial achievement of the objectives has resulted in a revision of the working methods and opens up new perspectives for development.

Patients', family caregivers', and professionals' perspectives on quality of palliative care: a qualitative study.

BACKGROUND: The quality of palliative care is the foremost preoccupation of clinicians, decision-makers, and managers as well as patients and families. Major input from healthcare professionals is required to develop indicators for the quality of palliative care, but the involvement of patients and families is also recognized as essential, even though this is rarely achieved in practice. AIM: The objectives of this study were to identify (1) convergences and divergences in the points of view of different stakeholders (patients, families, healthcare professionals) relative to key elements of the quality of palliative care and (2) avenues for refining existing indicators of quality of palliative care. DESIGN: Cross-sectional qualitative study. SETTING/PARTICIPANTS: There were six settings: two hospital-based palliative care units, one hospice, and three other medical units where a mobile palliative care team intervene. Semi-structured interviews were conducted among 61 patients, families, healthcare professionals, and managers. RESULTS: Four major dimensions of quality of care are deemed critical by patients, their families, and professionals: comprehensive support for the patients themselves, clinical management, involvement of families, and care for the imminently dying person and death. Differences exist between various stakeholders regarding perceptions of some dimensions of quality of care. Avenues for improving current quality of care indicators are identified. CONCLUSION: Our study results can be used to refine or develop quality indicators that truly mirror the points of view of patients and their families and of healthcare professionals.

[Quality of care and quality of life at work]. / Qualité des soins et qualité de vie au travail.

A criterion concerning quality of life at work was introduced into the V2010 French National Authority for Health (HAS) certification handbook. The HAS has developed programmes to ensure this dimension is included in projects for developing healthcare institutions and in the organisation of care.

Diffusion of a collaborative care model in primary care: a longitudinal qualitative study.

BACKGROUND: Although collaborative team models (CTM) improve care processes and health outcomes, their diffusion poses challenges related to difficulties in securing their adoption by primary care clinicians (PCPs). The objectives of this study are to understand: (1) how the perceived characteristics of a CTM influenced clinicians' decision to adopt -or not- the model; and (2) the model's diffusion process. METHODS: We conducted a longitudinal case study based on the Diffusion of Innovations Theory. First, diffusion curves were developed for all 175 PCPs and 59 nurses practicing in one borough of Paris. Second, semi-structured interviews were conducted with a representative sample of 40 PCPs and 15 nurses to better understand the implementation dynamics. RESULTS: Diffusion curves showed that 3.5 years after the start of the implementation, 100% of nurses and over 80% of PCPs had adopted the CTM. The dynamics of the CTM's diffusion were different between the PCPs and the nurses. The slopes of the two curves are also distinctly different. Among the nurses, the critical mass of adopters was attained faster, since they adopted the CTM earlier and more quickly than the PCPs. Results of the semi-structured interviews showed that these differences in diffusion dynamics were mostly founded in differences between the PCPs' and the nurses' perceptions of the CTM's compatibility with norms, values and practices and its relative advantage (impact on patient management and work practices). Opinion leaders played a key role in the diffusion of the CTM among PCPs. CONCLUSION: CTM diffusion is a social phenomenon that requires a major commitment by clinicians and a willingness to take risks; the role of opinion leaders is key. Paying attention to the notion of a critical mass of adopters is essential to developing implementation strategies that will accelerate the adoption process by clinicians.

[A gerontological network as an interface between healthcare professionals and homecare professionals]. / Rôle d'interface d'un réseau gérontologique entre les acteurs du sanitaire et du maintien à domicile.

The increase in the number of elderly people requires a reorganization of patient care based on integrated networks of healthcare and community services. These services enable patients to remain at home, thus avoiding the significant costs incurred as a result of long hospital stays and numerous visits to emergency departments. Despite the interest of policy-makers in integrated services, the real impact of gerontological networks remains unknown. This study aims to investigate healthcare professionals' perceptions of the links between the various actors involved in older patient care (professionals, health services and community services) and to examine the perceived impact of a gerontological network among a range of different actors. The qualitative study conducted as part of this research examined the Parisian gerontological network Ancrage and its partners based on three main data sources: Ancrage documentation; interviews with 40 healthcare professionals; and observations (inter-service meetings and case management meetings). The data were analyzed using qualitative research methods. Data analysis highlighted three characteristics: the central role of the general practitioner, who remains responsible for the trajectory of care; the relevance of the geriatrician's interventions in the case of severely dependent patients and the assessment of older patients' needs; and the interface between hospitals, general practitioners and homecare professionals. Healthcare professionals highlighted improvements in patients' transition between home and hospital. Two particular areas for improvement emerged from the data. The relationship between the case manager and general practitioners was found to be akin to a delegation of homecare responsibilities and has little impact on practices and relationships between actors. In addition, although geriatricians are gaining in legitimacy, collaboration with general practitioners remains limited.

Interactions among physicians, patients, and first-degree relatives in the familial screening of colorectal cancer in France.

AIMS: To characterize determining factors for compliance with colonoscopy recommendations in the familial screening of colorectal cancer through exploration of individual psychosociological factors and issues relating to patient/physician/sibling communication. METHODS: A qualitative approach involving a review of the literature and interviews with general practitioners, specialists, patients, and their siblings. RESULTS: A confrontation of the content of interviews with data from the literature made it possible to confirm the relevance of classic prevention models, the Health Belief Model and the Theory of Planned Behavior in the French cultural and healthcare environments, as well as their ability to identify the main individual factors liable to motivate or to discourage familial screening. The family network plays a decisive part in the transmission of information from the patient towards siblings. Physicians have expectations relating to communication aids and backup. This study above all highlights the difficulty in determining who is best suited to giving information to the patient, and when and how to relay this information to first-degree relatives. CONCLUSION: In view of the many difficulties in establishing interaction between patient, physician and siblings that is liable to lead on to efficient screening, we propose the study of the usefulness of a health-counseling intervention aimed to tailor and follow-up the delivery of screening information to the first-degree relatives.