Validation of the patient assessment of chronic illness care (PACIC) short form scale in heart transplant recipients: the international cross-sectional bright study.
ABSTRACT: BACKGROUND:Transplant recipients are chronically ill patients, who require lifelong follow-up to manage co-morbidities and prevent graft loss. This necessitates a system of care that is congruent with the Chronic Care Model. The eleven-item self-report Patient Assessment of Chronic Illness Care (PACIC) scale assesses whether chronic care is congruent with the Chronic Care Model, yet its validity for heart transplant patients has not been tested. METHODS:We tested the validity of the English version of the PACIC, and compared the similarity of the internal structure of the PACIC across English-speaking countries (USA, Canada, Australia and United Kingdom) and across six languages (French, German, Dutch, Spanish, Italian and Portuguese). This was done using data from the cross-sectional international BRIGHT study that included 1378 heart transplant patients from eleven countries across 4 continents. To test the validity of the instrument, confirmatory factor analyses to check the expected unidimensional internal structure, and relations to other variables, were performed. RESULTS:Main analyses confirmed the validity of the English PACIC version for heart transplant patients. Exploratory analyses across English-speaking countries and languages also confirmed the single factorial dimension, except in Italian and Spanish. CONCLUSION:This scale could help healthcare providers monitor level of chronic illness management and improve transplantation care. TRIAL REGISTRATION:Clinicaltrials.gov ID: NCT01608477, first patient enrolled in March 2012, registered retrospectively: May 30, 2012.
Project description:Homeopathy research has focused on chronic conditions; however, the extent to which current homeopathic care is compliant with the Chronic Care Model (CCM) has been sparsely shown. As the Bengali Patient-Assessed Chronic Illness Care (PACIC)-20 was not available, the English questionnaire was translated and evaluated in a government homeopathic hospital in West Bengal, India. The translation was done in six steps, and approved by an expert committee. Face validity was tested by 15 people for comprehension. Test/retest reliability (reproducibility) was tested on 30 patients with chronic conditions. Internal consistency was tested in 377 patients suffering from various chronic conditions. The questionnaire showed acceptable test/retest reliability [intraclass correlation coefficient (ICC) 0.57-0.75; positive to strong positive correlations; p < 0.0001] for all domains and the total score, strong internal consistency (Cronbach's ? = 0.86 overall and 0.65-0.82 for individual subscales), and large responsiveness (1.11). The overall mean score percentage seemed to be moderate at 69.5 ± 8.8%. Gender and presence of chronic conditions did not seem to vary significantly with PACIC-20 subscale scores (p > 0.05); however, monthly household income had a significant influence (p < 0.05) on the subscales except for "delivery system or practice design." Overall, chronic illness care appeared to be quite promising and CCM-compliant. The psychometric properties of the Bengali PACIC-20 were satisfactory, rendering it a valid and reliable instrument for assessing chronic illness care among the patients attending a homeopathic hospital.
Project description:BACKGROUND:Five-year survival on dialysis is only 40%, compared to 74% with a deceased donor kidney transplant (DDKT) and 87% with a living donor kidney transplant (LDKT). An American Society of Transplantation (AST) Consensus Conference recommended that patients with chronic kidney disease (CKD) Stages 3-5 have the opportunity to learn about and decide which treatment option is right for them, particularly about LDKT. However, early education about LDKT and DDKT outside of transplant centers is inconsistent and often poor, with patients in CKD 3 and 4 and ethnic/racial minorities even less likely to receive it. A new randomized control trial (RCT), in partnership with Kaiser Permanente Southern California (KPSC), will assess knowledge gaps and the effectiveness of a supplementary video-guided, print and technology-based education intervention for English- and Spanish-speaking patients in CKD Stages 3, 4, and 5 to increase LDKT knowledge and decision-making. To date, no published LDKT educational interventions have studied such a large and diverse CKD population. METHODS:In this RCT, 1200 English and Spanish-speaking CKD Stage 3-5 patients will be randomly assigned to one of two education conditions: ET@Home or KPSC standard of care education. Randomization will be stratified by CKD stage and primary language spoken. Those in the ET@Home condition will receive brochures, postcards, DVDs, and text messages delivering educational content in modules over a six-month period. Baseline data collection will measure demographics, transplant derailers, and the amount of previous CKD and transplant education they have received. Changes in CKD and transplant knowledge, ability to make an informed decision about transplant, and self-efficacy to pursue LDKT will be captured with surveys administered at baseline and at six months. DISCUSSION:At the conclusion of the study, investigators will understand key knowledge gaps for patients along the CKD continuum and between patients who speak different languages and have assessed the effectiveness of both English- and Spanish-language supplementary education in increasing KPSC patients' knowledge about the opportunities for and risks and benefits of LDKT. We hope this program will reduce disparities in access to transplant. TRIAL REGISTRATION:ClinicalTrials.gov Identifier: NCT03389932; date registered: 12/26/2017.
Project description:BACKGROUND: Many patients with chronic illness receive health care in primary care settings, so a challenge is to provide well-structured chronic care in these settings. Our aim was to develop and test a Dutch version of the PACIC questionnaire, a measure for patient reported structured chronic care. METHODS: Observational study in 165 patients with diabetes or COPD from four general practices (72% response rate). Patients completed a written questionnaire, which included instruments for assessing chronic illness care (PACIC), evaluations of general practice (Europep), enablement (PEI), and individual characteristics. RESULTS: The patients had a mean age of 68.0 years and 47% comprised of women. Twenty-two to 35% of responding patients did not provide answers to specific items in the PACIC. In 11 items the lowest answering category was used by 30% or more of the responders and in 6 items the highest answering category was used by this number of responders. Principal factor analysis identified the previously defined five domains reasonably well. Cronbach's alpha per domain varied from 0.71 to 0.83, and the intraclass coefficient from 0.66 to 0.91. Diabetes patients reported higher presence of structured chronic care for 14 out of the 20 PACIC items. The effect of patient evaluations of general practice on the PACIC score was positive (b = 0.72, p < 0.004), but the effect of patient enablement on the PACIC score was negative (b = -1.13, p < 0.000). CONCLUSION: A translated and validated Dutch version of the PACIC questionnaire is now available. Further research on its validity is recommended.
Project description:<h4>Background</h4>The Patient Assessment of Chronic Illness Care (PACIC) is a US measure of chronic illness quality of care, based on the influential Chronic Care Model (CCM). It measures a number of aspects of care, including patient activation; delivery system design and decision support; goal setting and tailoring; problem-solving and contextual counselling; follow-up and coordination. Although there is developing evidence of the utility of the scale, there is little evidence about its performance in the United Kingdom (UK). We present preliminary data on the psychometric performance of the PACIC in a large sample of UK patients with long-term conditions.<h4>Method</h4>We collected PACIC, demographic, clinical and quality of care data from patients with long-term conditions across 38 general practices, as part of a wider longitudinal study. We assess rates of missing data, present descriptive and distributional data, assess internal consistency, and test validity through confirmatory factor analysis, and through associations between PACIC scores, patient characteristics and related measures.<h4>Results</h4>There was evidence that rates of missing data were high on PACIC (9.6% - 15.9%), and higher than on other scales used in the same survey. Most PACIC sub-scales showed reasonable levels of internal consistency (alpha?=?0.68 - 0.94), responses did not demonstrate high skewness levels, and floor effects were more frequent (up to 30.4% on the follow up and co-ordination subscale) than ceiling effects (generally <5%). PACIC demonstrated preliminary evidence of validity in terms of measures of long-term condition care. Confirmatory factor analysis suggested that the five factor PACIC structure proposed by the scale developers did not fit the data: reporting separate factor scores may not always be appropriate.<h4>Conclusion</h4>The importance of improving care for long-term conditions means that the development and validation of measures is a priority. The PACIC scale has demonstrated potential utility in this regard, but further assessment is required to assess low levels of completion of the scale, and to explore the performance of the scale in predicting outcomes and assessing the effects of interventions.
Project description:RATIONALE:Aims and Objective: The validation study of the Patient Assessment of Chronic Illness Care (PACIC) questionnaire suggested a 5-factor structure determined a priori, but subsequent analyses have questioned the validity of the original factor structure. This study analyzed the factor structure of the PACIC using a large and diverse patient sample, and evaluated the identified factors through the lens of recent transformational initiatives in primary care. METHODS:Convenience samples of adults completed surveys in waiting rooms during clinic visits. Primary care patients with 1 or more chronic illnesses with complete PACIC responses at baseline from 39 clinics (n=1,567) and at follow-up from 36 clinics (n=1,536) participated. Exploratory and confirmatory factor analyses were conducted on baseline and follow-up patient questionnaire data from a cluster randomized controlled trial. Identified factors were evaluated in terms of item loadings, content, reliability, and the extent to which items reflected advances in the delivery of chronic illness care. RESULTS:Analyses supported the use of the PACIC summary score. Although a 5-factor model was retained, factor loadings were different from the original PACIC validation study. All factors had sufficient reliability, but findings suggested potential revisions to enhance the factor structure. CONCLUSIONS:It may be time to revise the PACIC to enhance the stability of the subscales (factors) and better reflect recent transformations in the delivery of chronic illness care.
Project description:Colorectal cancer (CRC) survivors experience difficulty navigating complex care pathways. Sharing care between GPs and specialist services has been proposed to improve health outcomes in cancer survivors following hospital discharge. Culturally and Linguistically Diverse (CALD) groups are known to have poorer outcomes following cancer treatment but little is known about their perceptions of shared care following surgery for CRC. This study aimed to explore how non-English-speaking and English-speaking patients perceive care to be coordinated amongst various health practitioners.This was a qualitative study using data from face to face semi-structured interviews and one focus group in a culturally diverse area of Sydney with non-English-speaking and English-speaking CRC survivors. Participants were recruited in community settings and were interviewed in English, Spanish or Vietnamese. Interviews were recorded, transcribed, and analysed by researchers fluent in those languages. Data were coded and analysed thematically.Twenty-two CRC survivors participated in the study. Participants from non-English-speaking and English-speaking groups described similar barriers to care, but non-English-speaking participants described additional communication difficulties and perceived discrimination. Non-English-speaking participants relied on family members and bilingual GPs for assistance with communication and care coordination. Factors that influenced the care pathways used by participants and how care was shared between the specialist and GP included patient and practitioner preference, accessibility, complexity of care needs, and requirements for assistance with understanding information and navigating the health system, that were particularly difficult for non-English-speaking CRC survivors.Both non-English-speaking and English-speaking CRC survivors described a blend of specialist-led or GP-led care depending on the complexity of care required, informational needs, and how engaged and accessible they perceived the specialist or GP to be. Findings from this study highlight the role of the bilingual GP in assisting CALD participants to understand information and to navigate their care pathways following CRC surgery.
Project description:It is well known that papers written in languages other than English have a great risk of being ignored simply because these languages are not accessible to the international scientific community. The objective of this paper is to facilitate the access to the public health and epidemiology literature available in Portuguese speaking countries. It was found that it is particularly concentrated in Brazil, with some few examples in Portugal and none in other Portuguese speaking countries. This literature is predominantly written in Portuguese, but also in other languages such as English or Spanish. The paper describes the several journals, as well as the bibliographic databases that index these journals and how to access them. Most journals provide open-access with direct links in the indexing databases. The importance of this scientific production for the development of epidemiology as a scientific discipline and as a basic discipline for public health practice is discussed. To marginalize these publications has implications for a more balanced knowledge and understanding of the health problems and their determinants at a world-wide level.
Project description:BACKGROUND: Treatment objectives for dyspepsia include improvements in both symptoms and health-related quality of life (HRQoL). There is a lack of disease-specific instruments measuring HRQoL in South East Asian dyspeptics. OBJECTIVES: To validate English and locally translated version of the Short-Form Nepean Dyspepsia Index (SF-NDI) in Malaysian patients who consult for dyspepsia. METHODS: The English version of the SF-NDI was culturally adapted locally and a Malay translation was developed using standard procedures. English and Malay versions of the SF-NDI were assessed against the SF-36 and the Leeds Dyspepsia Questionnaire (LDQ), examining internal consistency, test-retest reliability and construct validity. RESULTS: Pilot testing of the translated Malay and original English versions of the SF-NDI in twenty subjects did not identify any cross-cultural adaptation problems. 143 patients (86 English-speaking and 57 Malay speaking) with dyspepsia were interviewed and the overall response rate was 100% with nil missing data. The median total SF-NDI score for both languages were 72.5 and 60.0 respectively. Test-retest reliability was good with intraclass correlation coefficients of 0.90 (English) and 0.83 (Malay), while internal consistency of SF-NDI subscales revealed alpha values ranging from 0.83 - 0.88 (English) and 0.83 - 0.90 (Malay). In both languages, SF-NDI sub-scales and total score demonstrated lower values in patients with more severe symptoms and in patients with functional vs organic dyspepsia (known groups validity), although these were less marked in the Malay language version. There was moderate to good correlation (r = 0.3 - 0.6) between all SF-NDI sub-scales and various domains of the SF-36 (convergent validity). CONCLUSION: This study demonstrates that both English and Malay versions of the SF-NDI are reliable and probably valid instruments for measuring HRQoL in Malaysian patients with dyspepsia.
Project description:BACKGROUND:The Patient Assessment of Chronic Illness Care (PACIC-5A) was developed to assess the satisfaction with patient-provider interaction based on the Chronic Care Model. The additional 5A approach (assess, advise, agree, assist, arrange) allows to score behavioral counseling. The aim of the study was to assess the psychometric properties of the German adaptation of the PACIC-5A questionnaire in a sample of general practitioners (GP) patients with obesity. METHODS:Analyses were based on data from the study "Five A's counseling in weight management of obese patients in primary care: a cluster randomized controlled trial (INTERACT)". Data were collected via standardized questionnaires containing the 26-item version of the PACIC-5A questionnaire. A total of 117 patients with obesity were included in the analyses. Statistical procedures comprised descriptive analyses, the calculation of Cronbach's alpha, test-retest analyses and factor analyses in order to assess the psychometric properties including reliability and validity of the PACIC-5A. RESULTS:The patient's mean age was 43.4?years and the sample was mostly female (59%). Middle educational level was found for the majority (78%) and the mean Body Mass Index was 38.9?kg/m2. Descriptive analyses revealed a mean PACIC score of 2.33 and 5A sum score of 2.29. Notable floor effects were found. PACIC-5A showed high level of internal consistency (Cronbach's alphas >?0.9) and exploratory factor analyses resulted in a unidimensional structure. CONCLUSION:The results of this study provide evidence regarding the psychometric properties of the German version of the PACIC-5A used in a sample of GP patients with obesity and make an important contribution to the reliable and valid assessment of the patient-GP interaction with regard to obesity counseling in primary care.
Project description:Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) has been translated from English into several languages. Currently, there is no validated translation of FACT-BMT in Arabic. Here, we are reporting the first Arabic translation and validation of the FACT-BMT.The study was approved by the Institutional Research Advisory Council. The Arabic translation followed the standard Functional Assessment of Chronic Illness Therapy (FACIT.org) translation methodology (with permission). Arabic FACT-BMT (50- items) was statistically validated. Cronbach's alpha for internal consistency, Spearman's rank correlation coefficients method for Inter-scale correlations and Principal Component Analysis for factorial construct validity was used.One hundred and eight consecutive relapsed /refractory lymphoma patients who underwent high dose chemotherapy and autologous stem cell transplant were enrolled. There were 68 males (63%) and 40 females (37%) with a median age of 29 years (range 14-62). After Arabic questionnaire pre-testing (Cronbach's alpha 0.744), the study included 108 patients. Cronbach's alpha for the entire FACT-BMT indicated an excellent internal consistency (0.90); range (0.67 to 0.91). Cronbach's alpha for sub-groups of social (0.78), emotional (0.67) and functional wellbeing was (0.88). Cronbach's alpha for bone marrow transplant (0.81), FACT-General (0.89), and FACT- Trial Outcome Index (TOI); (0.91) also revealed excellent internal consistency. Patients had high scores in all domains of quality of life, indicating that most patients were leading a normal life. This translation of FACT-BMT in Arabic was reviewed and approved for submission by the FACIT.org.Our data reports the first translated, validated and approved Arabic version of FACT-BMT. This will help large numbers of Arabic speaking patients undergoing stem cell/bone marrow transplantation, across the globe.