Hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndromes (EDS) are frequently underdiagnosed, contributing to patient dissatisfaction in the healthcare system. This study evaluated the health service utilization, care, and subjective experiences of living with chronic illness among adults with HSD and EDS in the United States and Canada.
This was an anonymous, web-based, cross-sectional healthcare survey. The survey obtained basic demographic information, the Patient Assessment of Chronic Illness Care (PACIC+), as well as responses to questions on the use of healthcare and integrative medicine.
A total of 353 surveys were received. The most common complementary therapies used were physical therapy (82%), massage (68%), yoga (58%), chiropractic (48%), and meditation (43%). Mean (SD) summary PACIC and PACIC 5 As scores were 2.16 (0.77) and 2.25 (0.83), respectively. Across all PACIC domains, mean scores of individuals whose typical doctor visit was 30 min or at least an hour were significantly higher than those of individuals who indicated typical visits of 15 min (all p < 0.0001 by one-way ANOVA). There was widespread agreement on the importance of patient-provider relationship and trust, physicians\' understanding of the individual\'s complete medical history, and prioritization of physical and emotional safety (>95% agree or strongly agree to each).
Individuals with HSD or EDS report low satisfaction with chronic illness care and commonly seek out complementary and self-administered therapies, likely in an attempt to manage symptoms. Respondents reported a desire for greater time and attention from physicians. Results from this study could educate the healthcare community to improve support mechanisms for HSD and EDS populations.IMPLICATIONS FOR REHABILITATIONPatients with hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndromes (EDS) express a desire for patient-centered care and peer support from other individuals with HSD or EDS.Individuals with HSD or EDS have typically seen multiple doctors for their condition and their satisfaction with chronic care, as measured by the Patient Assessment of Chronic Illness Care (PACIC+), is low.The use of various complementary and integrative health treatments, as well as specialized diets, is common in this population, and might be beneficial for symptom management.Healthcare delivery for HSD and EDS may require a multidisciplinary healthcare team, as complementary and self-care modalities are typically used in addition to physical therapy, pain medication, and other conventional care.

UNASSIGNED: The aims of this study were to evaluate the psychometric properties of the Hungarian translation of the PACIC in a sample of patients with type 2 diabetes and to reveal the associations between the mean PACIC scores and the number of chronic diseases, or visits to GPs, and specialist. An exploratory factor analysis (EFA) has also been performed to test the structural validity of the PACIC scale.
UNASSIGNED: The Hungarian version of PACIC was validated using randomly selected patients with type 2 diabetes (N = 684) from licensed GP practices.
UNASSIGNED: Floor (1.6%-30.2%) and ceiling effects (11.3-33.6%) were similar of the PACIC scale. The internal consistency of the total scale (Cronbach\'s alpha 0.93) was excellent and subscales were good (between 0.73-0.9). The mean scores of each PACIC subscale group were between 2.99-3.53. There was a weak significant correlation between the mean PACIC scores of subscales and the number of GP visits (p < 0.001), and specialist visits (p < 0.001). The EFA identified four factors on the sample (KMO = 0.931). Gender and education showed correlation with some new factors.
UNASSIGNED: The psychometric properties of the Hungarian version of PACIC questionnaire showed a reasonable level of validity among patients with type 2 diabetes. Now, this instrument is ready to assess the chronic care of diabetic patients in Hungary.

BACKGROUND: The Patient Assessment of Chronic Illness Care (PACIC) scale is the most appropriate for assessing self-reported experience in chronic care. We aimed to validate the PACIC questionnaire by (1) assess patients\' perception of the quality of care for Danish patients with type 2 diabetes, (2) identify which factors are most important to the quality of care designated by the five subscales in PACIC, and (3) the validity of the questionnaire.
METHODS: A survey of 7,745 individuals randomly selected from the National Diabetes Registry. Descriptive statistics inter-item and item-rest correlations and factor analysis assessed the PACIC properties. Quality of care was analysed with descriptive statistics; linear and multiple regression assessed the effect of forty-nine covariates on total and subscale scores.
RESULTS: In total, 2,696 individuals with type 2 diabetes completed ≥ 50 % of items. The floor effect for individual items was 8.5-74.5 %; the ceiling effect was 4.1-47.8 %. Cronbach\'s alpha was 0.73-0.86 for the five subscales. The comparative fit index (CFI) and the Tucker-Lewis index (TLI) were 0,87, and 0,84, respectively. Mean PACIC score was 2.44 (± 0.04). Respondents, who receive diabetes care primarily at general practice and outpatient clinics had higher scores compared to those receiving care at a private specialist. Receiving rehabilitation was followed by higher scores in all subscales. Those 70 years or older had lower mean total and subscale scores compared to younger patient groups. A higher number of diabetes visits were associated with higher total scores; a higher number of emergency department visits were associated with lower total scores. The effects of healthcare utilisation on subscale scores varied.
CONCLUSIONS: These results provide insight into variations in the quality of provided care and can be used for targeting initiatives towards improving diabetes care. Factors important to the quality of perceived care are having a GP or hospital outpatient clinic as the primary organization. Also having a higher number of visits to the two organizations are perceived as higher quality of care as well as participating in a rehabilitation program. Floor and ceiling effects were comparable to an evaluation of the PACIC questionnaire in a Danish population. Yet, floor effects suggest a need for further evaluation and possible improvement of the PACIC questionnaire in a Danish setting. Total PACIC scores were lower than in other healthcare systems, possible being a result of different contexts and cultures, and of a need for improving diabetes care in Denmark.

Rising prevalence of type 2 diabetes (T2D), also among younger adults, constitutes a growing public health challenge. According to the person-centred Chronic Care Model, proactive care and self-management support in combination with community resources enhance quality of healthcare and health outcomes for patients with T2D. However, research is scarce concerning the importance of person-centred care and community resources for such outcomes as empowerment, and the relative impact of various patient support sources for empowerment is not known. Moreover, little is known about the association of age with these variables in this patient-group. This study, carried out among patients with T2D, examined in three age-groups (27-54, 55-64 and 65-75 years) whether person-centred care and diabetes-related social support, including community support and possibilities to influence community health issues, are associated with patient empowerment, when considering possible confounding factors, such as other quality of care indicators and psychosocial wellbeing. We also explored age differentials in empowerment and in the proposed correlates of empowerment.
Individuals from a register-based sample with T2D participated in a cross-sectional survey (participation 56%, n = 2866). Data were analysed by descriptive statistics and multivariate logistic regression analyses.
Respondents in the youngest age-group were more likely to have low empowerment scores, less continuity of care, and lower wellbeing than the other age-groups, and to perceive less social support, but a higher level of person-centred care than the oldest group. Community support, including possibilities to influence community health issues, was independently and consistently associated with high empowerment in all three age-groups, as was person-centred care in the two older age-groups. Community support was the social support variable with the strongest association with empowerment across age-groups. Moreover, vitality was positively and diabetes-related distress negatively associated with high empowerment in all age-groups, whereas continuity of care, i.e. having a family/regular nurse, was independently associated in the youngest age-group only.
Person-centred care and community support, including possibilities to influence community health issues, supports empowerment among adults with T2D. Findings suggest that age is related to most correlates of empowerment, and that younger adults with T2D have specific healthcare needs.

BACKGROUND: To improve care for patients with chronic diseases, a recent policy initiative in Thailand focused on strengthening primary care based on the concept of Chronic Care Model (CCM). This study aimed to assess the perception of patients about the health care services after the implementation.
METHODS: We conducted a cross-sectional survey of 4071 patients with hypertension and/or diabetes registered with 27 primary care units and 11 hospital non-communicable diseases (NCDs) clinics in 11 provinces. The patients were interviewed using a validated questionnaire of the Patient Assessment of Chronic Illness Care. Upgraded primary care units (PCUs) were ordinary PCUs with the multi-professional team including a physician. Trained upgraded PCUs were upgraded PCUs with the training input. Structural equation modeling was used to create subscale scores for CCM and 5 A model characteristics. Mixed effect logistic models were employed to examine the association of subscales (high vs low score) of patient perception of the care quality with type of PCUs.
RESULTS: Compared to hospital NCD clinics, ordinary PCUs were the best in the odds of receiving high score for every CCM subscale (ORs: 1.46-1.85; p < 0.05), whereas the trained upgraded PCUs were better in terms of follow-up (ORs:1.37; p < 0.05), and the upgraded PCU did not differ in all domains. According to the 5 A model subscales, patient assessment also revealed better performance of ordinary PCUs in all domains compared to hospital NCD clinics whereas upgraded PCUs and trained upgraded PCUs did so in some domains. Seeing the same doctor on repeated visits (ORs: 1.82-2.17; p < 0.05) or having phone contacts with the providers (ORs:1.53-1.99; p < 0.05) were found beneficial using CCM subscales and the 5A model subscales. However, patient assessment by both subscales did not demonstrate a statistically significant association across health insurance status.
CONCLUSIONS: The policy implementation might not satisfy the patients\' perception on quality of chronic care according to the CCM and the 5A model subscale. However, the arrangement of chronic care with patients seeing the same doctors or patients having telephone contact with healthcare providers may satisfy the patients\' perceived needs.

People with type 2 diabetes mellitus (T2DM) are best managed by a chronic care model that is associated with enhanced quality of care and improved patient outcome. Assessing patients\' perceived quality of care is crucial in improving the healthcare delivery system. Hence, this study determined the perceived quality of care among people with T2DM and explored its associations with (i) sociodemographic and clinical characteristics and (ii) types of healthcare clinics to guide future planning.
A cross-sectional study involving 20 primary healthcare clinics in the North East Region of Peninsular Malaysia and people with T2DM as the sampling unit was conducted from February to May 2019. The pro forma checklist, interview-guided Skala Kepuasan Interaksi Perubatan-11, and Patient Assessment of Chronic Illness Care (Malay version; PACIC-M) questionnaire were used for data collection. Univariate analysis and linear regression were used to determine the status of perceived quality of care and the factors associated with the perceived quality of care, respectively.
Overall, data from 772 participants were analyzed. The majority was from the Malay ethnic group (95.6%) with a mean (standard deviation [SD]) glycated hemoglobin A1c (HbA1c) level of 8.91% (2.30). The median (interquartile range [IQR]) of the number of medical officers available at each clinic was 6 (7), with Family Doctor Concept (FDC) clinics having a higher number of medical officers than non-FDC clinics (p = 0.001). The overall mean (SD) PACIC-M score was 2.65 (0.54) with no significant difference between scores of patients treated in the two clinic types (p = 0.806). Higher perceived quality of care was associated with lower number of medical officers (adjusted regression coefficient [Adj.β], - 0.021; p-value [p], 0.001), and greater doctor-patient interaction in all domains: distress relief (Adj.β, 0.033; p, < 0.001), rapport (Adj.β, 0.056; p, < 0.001), and interaction outcome (Adj.β, 0.022; p, 0.003).
Although there was no significant difference found between clinic type, this study reflects that patients are comfortable when managed by the same doctor, which may support a better doctor-patient interaction. A larger specialized primary care workforce could improve diabetes care in Malaysia.

BACKGROUND: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients\' medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents\' LYOL.
METHODS: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent\'s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach\'s alpha.
RESULTS: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed ≥5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item\" Given a copy of their treatment plan\" highest (mean 3.96), whereas \"encouragement to get to a specific group or class to cope with the condition\" (mean 1.74) was rated lowest. Cronbach\'s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett\'s test for sphericity p < 0.001), with items\' factor loadings ranging from 0.46 to 0.82.
CONCLUSIONS: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
BACKGROUND: The study was registered in the German Clinical Trials Register ( DRKS00011925 ) on 13 June 2017.

Among adults aged 20-45 years with type 2 diabetes mellitus, we examined the perceived quality of chronic care, and its associations with (i) sociodemographic and clinical characteristics, and (ii) diabetes distress.
In total, 216/460 (47%) completed a self-administered survey assessing sociodemographic characteristics, patient assessed chronic illness care (PACIC-20, scale of 1-5) and diabetes distress (PAID-20, scale of 0-100), and 197 had full quality of care data for assessment. We obtained clinical data from national registers and used linear and logistic regression models to examine associations.
The mean (SD) PACIC score was 2.6 (0.9) (score range 1-5). Lower PACIC scores were associated with female sex and current unemployment, and with receiving diabetes care in general practice compared with hospital outpatient clinics [mean difference: -0.4 (95% confidence interval (CI) (-0.7 to -0.2)]. People with upper quartile PACIC scores were less likely to report high diabetes distress compared with people with lower quartile PACIC scores [odds Ratio 0.3 95%CI (0.1-0.8)].
Higher quality of care was associated with lower diabetes distress among adults with early onset type 2 diabetes mellitus, but respondents reported less than optimal quality in several core areas of chronic care.

UNASSIGNED: Measuring patients\' experiences of health services has become an essential part of quality of care reporting and a means for identifying opportunities for improvement. This study aimed to evaluate change in patient experience in an interdisciplinary primary care program and to estimate the impact on patient experience of sociodemographic, function, pain and general health status, resource utilization, and process variables.
UNASSIGNED: A 6-month interdisciplinary care program for individuals with low back pain (LBP) was implemented at four primary care settings and evaluated using an observational pre/post study design. The change in patient experience was evaluated using the Patient Assessment of Chronic Illness Care questionnaire (PACIC) completed at baseline and 6 months post-intervention (n=132). Descriptive and multivariable analyses were performed using SAS version 9.3.
UNASSIGNED: The average patient age was 57 (SD: 14) years of age and the majority were female (53%). The mean overall PACIC score was 2.6 (SD: 1.1) at baseline and 3.6 (SD: 0.9) at 6 months. The experience of care improved for 62% of the participants based on the minimal clinically important difference (MCID). No significant determinants of overall PACIC change score were identified in the multivariable regression models.
UNASSIGNED: The lack of association of hypothesized determinants requires further examination of the properties of the PACIC and with a larger sample. Future investigation is needed on the relationship between improved patient experience and outcomes.

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.
CONCLUSIONS: 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.