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

Abstract

BackgroundIndicators 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.MethodsResults 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.ResultsA 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.ConclusionsQuali-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 registrationclinicaltrials.gov NCT02814682, registration date 28.6.2016.Electronic supplementary materialThe online version of this article (10.1186/s12904-019-0403-z) contains supplementary material, which is available to authorized users.

Measuring quality of pre‐hospital traumatic shock care—development and validation of an instrument for resource‐limited settings

“…While a novel application in the field of pre‐hospital trauma care, our development and validation methodology are similar to several published studies that aimed to produce similar tools to assess quality of care in ischemic stroke, geriatrics, heart failure, and palliative care. 21 , 23 , 24 , 25 Similar to Kergoat and colleagues who selected geriatric falls as the tracer condition for measuring geriatric quality of care, we selected pre‐hospital traumatic shock care as the tracer condition. 21 , 26 , 27 We combined the literature review with expert consensus to create a case definition and care domains appropriate for resource‐limited settings.…”

“…Our final instrument had good performance characteristics; domains achieved at least moderate reliability and high accuracy which are comparable to the quality of care instruments from other medical disciplines. 21 , 23 , 24 , 25 Agreement with reference standard could not be calculated for a few rare variables (eg, tourniquet application) and procedures done without variation (eg, IV fluids) ‐ for those variables, we relied on accuracy and reliability data and abstractor feedback. The poorest performing sections were in the A‐B‐C‐D assessment and intervention sections (specifically, airway, breathing, or neurologic issues).…”

Psychometric Properties of the ‘Patients’ Perspective of the Quality of Palliative Care Scale’

“…[19] Furthermore, research shows that developing palliative care always depends on understanding the patients' needs and their perspectives on the physical, psychological, social, spiritual and cultural quality of care and continuous evaluation of the process. [20] In other words, an adequate insight and clear picture of palliative care quality will be achieved through getting the patients' opinions and their real experiences. [21] Various palliative care quality assessment instruments have been developed throughout the world to gather the patients' perspectives on the quality level of palliative care.…”

“…For instance, Yun et al developed a questionnaire to assess the quality of palliative care in cancer patients in Korea, [22] and Guirimand et al devised and validated a questionnaire on the patients' perspectives of the quality of palliative care in France. [20] Moreover, Buzgova et al designed an instrument to assess the patients' needs in palliative care and levels of care. [23] By the same token, Lyons et al validated the Functional Assessment of Chronic Illness Therapy-Palliative care scale to appropriately assess the quality of existing care.…”

“…The original 'patients' perspectives of the palliative care quality scale' was developed by Guirimand et al in France. [20] This scale has eight subscales with 35 items, including the availability of caregivers to satisfy patient's needs (9 items), serenity (4 items), quality of information (four items), pain management (three items), caregivers' listening skills (five items), psychosocial and spiritual aspects (four items), the possibility to refuse (care or volunteers) (two items) and respect for the patient (four items). These subscales were scored in the Likert scale as 'no, not at all, ' 'not really, ' 'almost, ' 'yes exactly' and 'does not apply to me.…”