Patients’ assessment of chronic illness care: a validation study among patients with type 2 diabetes in Finland

Patients’ assessment of chronic illness care: a validation study among patients with type 2... Background: To meet the challenges of the rising prevalence of chronic diseases, such as type 2 diabetes, new approaches to healthcare delivery have been initiated; among these the influential Chronic Care Model (CCM). Valid instruments are needed to evaluate the public health impact of these frameworks in different countries. The Patient Assessment of Chronic Illness Care (PACIC) is a 20-item quality of care measure that, from the perspective of the patient, measures the extent to which care is congruent with the CCM. The aim of this study was to evaluate the psychometric properties of the Finnish translation of the PACIC questionnaire, in terms of validity and reliability, in a large register-based sample of patients with type 2 diabetes. Method: The PACIC items were translated into Finnish in a standardized forward-backward procedure, followed by a cross-sectional survey among patients with type 2 diabetes (response rate 56%; n = 2866). We assessed the Finnish version of the PACIC scale for the following psychometric properties: content validity, internal consistency reliability, convergent and construct validity. We also present descriptive data on total scale as well as predetermined subscale levels. Results: The item-response on the PACIC scale was high with only small numbers of missing data (0.5–1.1%). Ceiling effects were low (0.3–5.3%) whereas floor effects were over 20% for two of the predetermined subscales (problem solving and follow-up/coordination). The total PACIC scale showed a reasonable distribution and excellent internal consistency (alpha 0.94) while the internal consistency of the subscales were at least acceptable (0.74–0.86). The principal component analysis identified a two- or three-factor solution instead of the proposed five- dimensional. In other respects, the PACIC scale showed the hypothesized relationships with quality of care and outcome measures, thus demonstrating convergent and construct validity. Conclusion: A Finnish version of the PACIC scale is now validated in the primary care setting among patients with type 2 diabetes. The findings suggest comparable psychometric properties of the Finnish scale as of the original English instrument and earlier translations, and reasonable levels of validity and reliability. Keywords: Chronic care model, PACIC, Primary care, Quality of care, Type 2 diabetes, Validation * Correspondence: nina.simonsen-rehn@helsinki.fi Folkhälsan Research Center, P.O. Box 211, 00251 Helsinki, Finland Department of Public Health, University of Helsinki, P.O. Box 20, 00014 Helsinki, Finland Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Simonsen et al. BMC Health Services Research (2018) 18:412 Page 2 of 10 Background Methods The rising prevalence of chronic diseases such as type 2 dia- Design and setting betes, worldwide, puts increasing pressure on health sys- We performed a standardized translation of the PACIC tems and especially on primary health care. New models of instrument, followed by a cross-sectional survey among service delivery focusing on patient-centered and coordi- type 2 diabetes patients. This study is part of a larger nated care have been initiated aiming at improving the qual- study of quality of care in diabetes type 2 in five munici- ity of care for persons with chronic illnesses, which is a palities in Southern and Central Finland (the ‘Good Dia- political priority in many countries [1]and endorsed by the betes Care’– Study), with a sample from the register of WHO [2]. The influential Chronic Care Model (CCM) [3] the Social Insurance Institution of Finland (SII). SII is a provides a promising framework to enhance evidence-based government agency in charge of settling benefits under chronic care [4]. It describes a patient-centered care ap- national social security programs. SII keeps a country- proach that is also planned and proactive population-based, wide register of all those persons who have entitlement and thus different from a reactive acute-oriented care. The to a special reimbursement for medicines because of evidence concerning the potential of the model, or compo- chronic diseases, such as diabetes. The sample of the nents of it, to improve care processes, outcomes of care and present study was collected among persons who fulfilled health care resource use is growing [1, 5]and themodel has the following inclusion criteria: been proposed as an effective framework in primary care for improving quality of diabetes care [6–8]. The principles a) had entitlement to a special reimbursement for of the CCM have been included in disease management medicines used in the treatment of type 2 diabetes programs in different countries, for example, the USA, (ICD-10 code, E11) in 2000–2010, and the right Canada, England and Australia [1]and,accordingly, indif- was valid in September 2011 and onward, ferent health-care systems. b) born in 1936–1991 (20–75 years), alive and had no In evaluating the public health impact of new frame- safety prohibition at the time of the data collection, works – like the CCM – in health care, adequate instru- c) Finnish as native language, ments, that is, measures of quality that are reliable and d) one of the five study municipalities as place of valid, are needed [9]. Moreover, instruments covering residence. the patient perspective to quality of care are crucial [10– 12]. The Patient Assessment of Chronic Illness Care Study population (PACIC) has been designed to assess quality of care for Data collection was done as a postal survey. In all, 7575 patients with a chronic illness [13]. It measures the dif- persons fulfilled the inclusion criteria and a sample of ferent dimensions of the CCM from the perspective of 5167 persons was collected based on power-analysis: the patient, focusing on self-management support – in- 2000 persons from each of the two large municipalities cluding collaborative goal setting, problem solving and by random sampling, and all persons from the three follow-up – as well as planned proactive care. small municipalities. There were 2962 (57%) men and The PACIC scale was developed and validated by Glas- 2205 women (43%) in the sample, corresponding to the gow et al. in the USA for patients with a variety of rate of sex in the total population of patients with type 2 chronic diseases [13] and for patients with diabetes type diabetes in the five study municipalities. The question- 2[14]. It has been translated and validated into Dutch, naire, including the Finnish version of PACIC together Spanish, Danish, French, Spanish [9, 15–17] and Ger- with other quality of care measures as well as demo- man (PACIC-5a) [18]. The psychometric performance of graphic and clinical variables, was mailed to respondents the English scale has been studied also outside USA: in in September 2011 by the SII with a reply-paid envelope Australia and the UK [12, 19]. In a study comparing dif- addressed to the research institute. A reminder to ferent generic instruments, the PACIC was evaluated be- non-respondents was mailed in October, and another re- ing among the most promising as regards patients’ minder with a new copy of the questionnaire in Novem- experience of quality of integrated care [11]. ber. The final response rate was 56% (n = 2866). The The Finnish Ministry of Social Affairs and Health pro- study was approved by the Ethical Committee of the poses implementation of the CCM in primary healthcare Hjelt Institute, University of Helsinki, and the SII. centers [20], and as a Finnish validated version of the PACIC scale was not available and earlier studies have suggested the PACIC questionnaire need for validating the scale when adapting it to different The PACIC scale [13] (see Table 2) includes 20 items, healthcare systems, the aim of our study was to evaluate the comprising five subscales: patient activation (items 1–3), psychometric properties of the Finnish translation of the delivery system design/decision support (items 4–6), goal PACIC, in a large register-based sample of patients with type setting/tailoring (items 7–11), problem solving/contextual 2 diabetes, in terms of reliability and validity. (items 12–15) and coordination/follow-up (items 16–20). Simonsen et al. BMC Health Services Research (2018) 18:412 Page 3 of 10 The subscales were not separated in the questionnaire, of respondents with the lowest (floor effect) and the high- and, moreover, the 6-month time frame was extended to est (ceiling effect) possible scores on scale and predeter- 12 months – thus patients could base their responses on a mined subscale levels. Thus, floor and ceiling effects were longer period of care [21]. Each item is rated on a five measured as the percent of patients who reported a mini- point scale (from ‘almost never’ to ‘almost always’). Higher mum (i.e., 1) or maximum (i.e., 5) score on each subscale scores indicate higher quality of care. Each subscale is and on the total PACIC scale. As floor and ceiling effects scored by averaging items completed within the scale, and are present if a substantial proportion of respondents the overall PACIC score is an average across all 20 items. score at either extreme of range, suggesting that a meas- The English version of the PACIC questionnaire was ure is not sensitive to real differences [26], we also used a translated into Finnish in a structured procedure, includ- stricter criterion on the total PACIC scale (< 1.5 or > 4.5). ing forward and backward translations by different Effects under 20% were defined as optimal [26]. translators. The back-translated English version was In terms of reliability, we assessed internal consistency compared with the original version in English – showing at the scale and predetermined subscale levels. Good in- high correspondence – and thereafter a panel of three ternal consistency is needed to justify summarizing of researchers discussed the translations, which resulted in items at both subscale and total scale levels [27]. Cron- a slight revision of the original Finnish translation in bach’s alphas between 0.70 and 0.80 have been proposed order to enhance clarity and cultural equivalence. acceptable and scores over 0.80 as excellent [26]; however, alphas should not exceed 0.95 [27]. Inter-correlations be- Measures administered to assess construct validity tween the predetermined subscales were assessed with We measured empowerment with the Diabetes Em- Spearman’srho. powerment Scale-Short Form (DES-SF): an 8-item scale Possible differences in PACIC scores among sub- that provides an overall assessment of diabetes-related groups (related to demographic and clinical characteris- psychosocial self-efficacy [22, 23] on a 5-point scale ran- tics) were explored with analysis of variance, ging from ‘strongly disagree’ to ‘strongly agree’, with a Kruskal-Wallis or Mann-Whitney U tests, as appropri- Cronbach’s alpha reliability of 0.86 in our data. ate. Moreover, the strengths of these associations were We included the Perceived Competence Scale (PCS) assessed with Spearman’srho. measure [24] to assess perceived self-care competence as We analyzed the factorial structure of the PACIC scale in regards diabetes: a 4-item scale that assesses felt competence the Finnish context with principal component analysis (ex- for diabetes management. In our study, we used a 5-point traction criterion: Eigenvalue > 1) as many item-variables scale ranging from ‘strongly disagree’ to ‘strongly agree,w ’ ith were not normally distributed. Earlier studies have found aCronbach’s alpha reliability of 0.93 in our data [25]. strong correlations between subscales and thus the solution Self-reported health was measured on a single item was rotated using Oblimin rotation. 5-point scale, ranging from excellent to poor. Furthermore, we analyzed convergent and construct We used the Modified/Short Form Health Care Cli- validity based on the following hypotheses. We expected mate Questionnaire (HCCQ) [24] to assess convergent that PACIC scores, i.e. the receipt of patient-centered, validity, a subtype of construct validity. The HCCQ as- structured chronic illness care, would be correlated sesses the degree to which patients perceive their health moderately (> 0.40) with perceived autonomy support- professional to be autonomy supportive (versus control- iveness [12], i.e. scores on the HCCQ, and also positively ling). The scale has 6 items, and we used a 5-point scale correlated to outcomes of care, i.e., diabetes empower- ranging from ‘strongly disagree’ to ‘strongly agree’, with a ment, self-reported health [19, 28] and perceived Cronbach’s alpha reliability of 0.95 in our data [25]. self-care competence [29]. Moreover, we expected that patients having continuity of care as regards their dia- Analyses betes care – that is, a regular primary care physician We assessed the Finnish PACIC scale based on quality and/or nurse – would have higher PACIC scores com- criteria for questionnaires [15, 26, 27] for the following pared to those not being cared for by a regular health psychometric properties: content validity, internal care professional. consistency reliability, convergent and construct validity. We also present descriptive data on predetermined sub- Results scale and total scale levels. The findings are compared Responses were received from 2866 respondents (re- with findings from international validation studies. sponse rate 56%). The mean age of respondents was 63.4 The content validity of the PACIC is based on the CCM (SD 7.8), 55.9% were male and 40.2% had a higher profes- and its aims [13]. We assessed the acceptability and the sional educational level. The mean duration of diabetes interpretability of the translated items by exploring rates type 2 was 8.3 years (SD 6.0). Of the respondents, 2511 of missing data on item level, and assessed the proportion (87.6%) responded to all 20 PACIC items, and 93.5% to at Simonsen et al. BMC Health Services Research (2018) 18:412 Page 4 of 10 least 17, and these 2681 respondents were included in the Principal component analysis (PCA) identified a study sample. In this sample, the mean age was 63.2 (SD two-factor solution, which explained 53% of the variance. 7.7), 55.8% were male, 41% had a higher professional edu- When allowing for a third factor (which almost reached the cational level and the mean duration of diabetes was extraction criterion: Eigenvalue > 1), 58% of the variance 8.3 years (SD 5.9), thus being quite comparable with the was explained (Table 5). In the two-factor solution, Factor 1 whole sample. Municipal primary healthcare centers were is ‘shared decision making and self-care support’ and Factor the main provider of diabetes care for 77% of respondents; 2 ‘planned care and social support,’ whereas in the 18% received their care through occupational healthcare three-factor solution, Factor 1 is ‘shared decision making services and 4% through private healthcare centers. The and satisfaction,’ Factor 2 ‘coordinated care and social majority (75%) used oral diabetes medication. Demo- support,’ and Factor 3 ‘personal goal-setting and graphic and clinical data on the study sample as well as problem-solving’. When performing a PCA separately for the whole sample, in order to discern possible differences, patients receiving care in municipal healthcare centers and are provided in Table 1. those receiving care in occupational or private healthcare The item response on the PACIC scale was high with services (data not shown), an identical three-factor solution only small numbers of missing values (0.5–1.1%), also in as in Table 5 was identified among patients in municipal the whole sample (4–6%; Table 2). Floor effects on the healthcare centers (only the loading values were different) subscales were 5.7–24.9%, over 20% for two of the sub- and nearly an identical two-factor solution among patients scales (problem solving and follow-up/coordination), in occupational or private healthcare services (only one whereas ceiling effects were low (0.3–5.3%). On the total item, no. 4, loaded differently). PACIC scale, floor and ceiling effects were low (2.8/0.1); As regards convergent and construct validity, PACIC when having a stricter lower and upper limit of < 1.5 total scores correlated well with perceived autonomy and > 4.5, the effects were 17.8 and 0.9 (Table 3). supportiveness (Spearman’s rho 0.58) and significantly The mean total PACIC score was 2.32 (SD 0.84) also with the outcome variables, and among these, most and the median 2.3, with an IQR of 1.7–2.9. The total strongly with the Diabetes empowerment scale (0.24; PACIC scale showed a reasonable distribution and Table 6). The correlations with the two other outcome approached normal distribution; however, it was mod- variables – perceived competence and self-reported erately skewed (skewness 0.530, kurtosis − 0.248). The health – were 0.19 respective 0.15. Continuity of care, subscale means ranged from 3.12 (1.06) for delivery that is, having a regular physician and/or having a regu- system design/decision support to 1.79 (0.76) for fol- lar nurse, was associated with higher PACIC scores, low-up/coordination (Table 3). 2.41/2.05 (yes/no; p < 0.001) and 2.47/2.14 (yes/no; p < Alpha reliabilities were acceptable to excellent, and as 0.001), respectively, and the strength of the associations follows: total PACIC scale 0.94 (20 items), patient acti- were 0.19 and 0.20. vation 0.85 (3 items), delivery system design/decision support 0.74 (3 items), goal setting/tailoring 0.80 (5 Discussion items), problem solving/contextual 0.86 (4 items) and fol- Quality improvement in healthcare services, especially in low-up/coordination 0.74 (5 items). primary health care – in order to answer the challenge The inter-correlation (Spearman’s rho) between the of a rising prevalence of chronic conditions within the subscales was moderate to high, being highest between population – is a focus for health policy makers in many the problem-solving and goal-setting scales (0.78) and countries. International quality improvement models goal-setting and decision-support scales (0.71), whereas and measures ensure possibilities to learn from each the follow-up scale was the least correlated with the other, both concerning strengths and weaknesses of other scales, and lowest with the patient-activation scale quality improvement efforts. To be able to track changes (0.51). The goal-setting (0.91) and problem-solving (0.90) in standards of care, as well as to assess the effectiveness scales correlated the highest with the total PACIC scale of interventions, good measures are needed [12]. As and the follow-up scale the least (0.76). concerns patients with chronic conditions, their evalu- The subgroup analysis showed differences in total ation of care quality and improvements in care quality PACIC scores according to gender, age, marital status, are important, meaning that measures that assess specif- medication, duration of disease and service provider ically patients’ perceptions are crucial. In this study, we (Table 4). However, the strengths of these associations have assessed the validity and reliability of a Finnish were modest. As concerns patients’ demographic charac- translation of the internationally validated PACIC scale, teristics, age had the strongest association (Spearman’s as well as its utility, in the Finnish healthcare system. rho − 0.12) with the total PACIC score, and among clin- In summary, our findings showed that the trans- ical characteristics, the strongest association was found lated PACIC scale had a reasonably good validity and between service provider and PACIC (0.14). reliability among patients with type 2 diabetes in the Simonsen et al. BMC Health Services Research (2018) 18:412 Page 5 of 10 Table 1 Demographic and clinical data Study sample n = 2681 Whole sample n = 2866 Characteristic Values are % or mean (SD) Gender Male 55.8 55.9 Age 63.2 (7.7) 63.4 (7.8) Age 27 to 54 13.0 12.7 55 to 64 38.7 37.9 65 to 75 48.3 49.4 Professional education Upper secondary education (vocational school) or less 59.0 59.8 Higher education (college, polytechnic, university) 41.0 40.2 Marital status Single 9.6 9.8 Married/cohabiting 67.0 66.5 Widowed/divorced 23.4 23.7 Duration of diabetes 1–3 years 19.7 19.5 4–10 years 53.1 52.9 More than 10 years 27.3 27.6 Medication Oral drugs only 74.6 74.7 Oral drugs + insulin/insulin only 24.1 24.1 Other (e.g. GLP-1 analog) 1.3 1.2 Service provider responsible for care of diabetes Municipal healthcare center 77.2 77.6 Occupational healthcare service 18.4 18.2 Private healthcare center 4.4 4.3 Perceived autonomy support (HCCQ) range 1–5 3.5 (1.2) 3.6 (1.2) Perceived competence range 1–5 4.2 (0.9) 4.2 (0.9) Diabetes empowerment range 1–5 4.0 (0.7) 4.0 (0.7) Self-reported health Poor 50.7 50.7 Good 26.6 26.4 Very good 22.7 22.9 Continuity of care Regular physician (yes) 74.3 74.5 Regular nurse (yes) 51.5 51.5 1.1% of all respondents (n = 32) used no medication for their diabetes (despite being on the SII register) 1% of all respondents (n = 30) reported not having visited a doctor/nurse for their diabetes during the last 2 years, and 1.4% (n = 40) had a hospital as their main service provider Finnish primary care setting. The study had a satisfac- distributed and the internal consistency was excellent. tory response rate and the majority (88%) of respon- Two of the five predetermined subscales had prob- dents answered all PACIC items, indicating good face lems with floor effects, but all these five subscales validity. The validation analyses, moreover, showed had acceptable to excellent internal consistency. In that scores on the total scale were reasonably well terms of construct validity, the translated PACIC Simonsen et al. BMC Health Services Research (2018) 18:412 Page 6 of 10 Table 2 Missing values on PACIC items Item Missing % (Study Missing % (Whole sample; n = 2681) sample; n = 2866) 1. Asked for my ideas when we made a treatment plan 0.8 4.7 2. Given choices about treatment to think about 0.8 5.3 3. Asked to talk about any problems with my medicines or their effects 0.3 4.5 4. Given a written list of things I should do to improve my health 0.7 5.0 5. Satisfied that my care was well organized 0.7 4.2 6. Shown how what I did to take care of my illness influenced my condition 0.3 4.0 7. Asked to talk about my goals in caring for my illness 0.2 4.4 8. Helped to set specific goals to improve my eating or exercise 0.5 5.0 9. Given a copy of my treatment plan 0.7 5.4 10. Encouraged to go to a specific group or class to help me cope with my chronic illness 0.2 5.0 11. Asked questions, either directly or on a survey, about my health habits 0.3 4.7 12. Sure that my doctor or nurse thought about my values and my traditions when they recommended 1.1 6.0 treatments to me 13. Helped to make a treatment plan that I could carry out in my daily life 0.4 5.3 14. Helped to plan ahead so I could take care of my illness even in hard times 0.7 6.0 15. Asked how my chronic illness affects my life 0.3 5.4 16. Contacted after a visit to see how things were going 0.2 5.1 17. Encouraged to attend programs in the community that could help me 0.3 5.4 18. Referred to a dietician, health educator, or counselor 0.4 5.4 19. Told how my visits with other types of doctors, like an eye doctor or surgeon, helped my treatment 0.2 4.8 20. Asked how my visits with other doctors were going 0.3 5.2 Items shown in the original English version; Glasgow et al. [13] scale, as hypothesized, had significant associations different studies have been attributed to methodological dif- with care quality, i.e., perceived autonomy supportive- ferences, but also to real differences between healthcare ness – indicating convergent validity – and continuity systems and samples of patients [17]. Spicer and colleagues of care, as well as outcome measures. The PCA, how- [21] have raised the issue whether the PACIC scale is a for- ever, revealed a two- or three-factor structure in the mative rather than a reflective measure, and thus ques- current Finnish healthcare context, instead of the pro- tioned the suitability of factor analysis and internal posed five-dimensional. reliability estimates. Cramm and Nieboer [34], based on In the majority of earlier studies, the five dimension their findings in a follow-up study, however, argue that the structure of the PACIC scale has not been confirmed. Stud- scale can be regarded a reflective measure. Fan et al. [33] ies in different populations and healthcare systems have suggestthatauniversallyapplicable factorial structure suggested also one-, two- and four-dimensional structures might not exist. In our study, we found different factorial [17, 19, 30–33]. Differences in the PACIC scale structure in structures among patients receiving care by different Table 3 Descriptive data on subscales and complete PACIC scale (Study sample; n = 2681) a c Scale Missing % Floor/Ceiling % Mean (SD) Median IQR (range 1–5) (range 1–5) Patient activation (3 items; no missing items allowed) 1.5 17.2/4.7 2.54 (1.21) 2.3 1.7–3.3 Delivery system design/decision support (3 items; no missing items allowed) 1.5 5.7/5.3 3.12 (1.06) 3.3 2.3–4.0 Goal setting/tailoring (5 items; 1 missing item allowed) 0 12.7/0.6 2.25 (0.93) 2.2 1.4–2.8 Problem solving/contextual (4 items; 1 missing item allowed) 0.4 20.2/2.6 2.29 (1.10) 2.0 1.3–3.0 Follow up/coordination (5 items; 1 missing item allowed) 0.1 24.9/0.3 1.79 (0.76) 1.6 1.2–2.2 PACIC total score (20 items; 3 missing items allowed) 0.1 2.8/0.1 (17.8/0.9 ) 2.32 (0.84) 2.3 1.7–2.9 Floor and ceiling effects = percent of respondents attaining minimum or maximum scores (1/5) Floor and ceiling effects = percent of respondents attaining PACIC total scores < 1.5/> 4.5 Interquartile range (IQR) = first to third quartile Simonsen et al. BMC Health Services Research (2018) 18:412 Page 7 of 10 Table 4 Results for PACIC by demographic and clinical characteristics (Study sample; n = 2681) Characteristic PACIC Mean (SD) P-value Spearman’s rho P-value Gender Men 2.36 (0.84) 0.001 − 0.07 0.000 Women 2.26 (0.84) Age 27–54 2.49 (0.89) 0.000 −0.12 0.000 55–64 2.40 (0.87) 65–75 2.21 (0.84) Professional education Upper secondary education or less 2.31 (0.84) 0.90 0.01 0.806 Higher education 2.32 (0.84) Marital status Single 2.42 (0.87) 0.000 −0.10 0.000 Married/cohabiting 2.34 (0.84) Widowed/divorced 2.16 (0.80) Duration of diabetes ≤ 3 years 2.41 (0.85) 0.028 − 0.05 0.011 4–10 years 2.32 (0.85) > 10 years 2.27 (0.83) Medication Oral drugs only 2.29 (0.83) 0.001 0.06 0.002 Oral drugs + insulin/insulin only/other 2.41 (0.86) Service provider responsible for care Municipal healthcare 2.25 (0.82) 0.000 0.14 0.000 Occupational or private healthcare 2.54 (0.89) a b Kruskal-Wallis test Mann-Whitney U test healthcare providers. This might suggest differences in care the results of the original English version [13]. As in our structures and processes, or, alternatively, as suggested by data, the subscales delivery system design/decision sup- Fan et al. [33], different priorities as concerns chronic dis- port and/or follow-up/coordination have had the lowest ease care among the patients. Some earlier studies have internal consistencies in earlier validation studies as well raised questions about the utility of the PACIC subscales, [12, 13, 15, 18, 31], suggesting that this does not reflect and propose the use of the PACIC total score as an overall the translation process nor the Finnish primary health- experience of chronic illness care [14, 30, 33, 35]. Primary care context [12]. care personnel’s perceptions of implementation of the The mean scores on the total PACIC scale and the sub- CCM components seem to be only weakly, though for the scales were relatively low in our sample and comparable most part consistently, associated with patients’ perceptions with the scores in patients with type 2 diabetes in of CCM (PACIC and its subscales) [36]. More research is Denmark [37] and patients with long-term conditions in needed to determine the degree to which PACIC and UK [12]; in general, lower than those reported elsewhere. possibly the subscales are related to patient outcomes. Consistent with earlier studies [12, 13], especially fol- Moreover, comparing the relative contribution of the pre- low-up/coordination activities were rated low, showing determined subscales in this regard with the contribution problems with floor effects, as did also the problem solving of subscales derived from exploratory factor analysis in the subscale in our study. According to Glasgow and col- patient population of interest could be worthwhile. leagues [13], these two subscales, as well as the goal setting Although the five dimension factorial structure was scale, form the core of modern chronic care, but are sel- not established, the predetermined subscales, as well as dom present in the absence of specific quality improve- the total PACIC scale, had good internal consistencies: ment efforts. Although there have been care quality Cronbach’s alpha being 0.94 for the total scale, and vary- improvement initiatives in primary healthcare in Finland, ing from 0.74 to 0.86 for the subscales, thus confirming there were still ongoing development work to implement, Simonsen et al. BMC Health Services Research (2018) 18:412 Page 8 of 10 Table 5 Factor loadings of the PACIC items using Oblimin rotation (Study sample; n = 2681) a b PCA 1 PCA 2 Predetermined subscales and items F1 F2 F1 F2 F3 Patient activation 1. Asked for my ideas when we made a treatment plan 0.86 0.74 2. Given choices about treatment to think about 0.73 0.63 3. Asked to talk about any problems with my medicines or their effects 0.76 0.73 Delivery system design/Decision support 4. Given a written list of things I should do to improve my health 0.43 −0.63 5. Satisfied that my care was well organized 0.82 0.81 6. Shown how what I did to take care of my illness influenced my condition 0.85 0.70 Goal setting/Tailoring 7. Asked to talk about my goals in caring for my illness 0.74 0.50 −0.44 8. Helped to set specific goals to improve my eating or exercise 0.57 −0.61 9. Given a copy of my treatment plan 0.45 −0.70 10. Encouraged to go to a specific group or class to help me cope with my chronic illness 0.78 0.55 −0.41 11. Asked questions, either directly or on a survey, about my health habits 0.57 0.37 −0.41 Problem solving/Contextual 12. Sure that my doctor or nurse thought about my values and my traditions when they 0.73 0.64 recommended treatments to me 13. Helped to make a treatment plan that I could carry out in my daily life 0.51 0.39 −0.64 14. Helped to plan ahead so I could take care of my illness even in hard times 0.35 0.55 −0.60 15. Asked how my chronic illness affects my life 0.43 0.44 −0.39 Follow-up/Coordination 16. Contacted after a visit to see how things were going 0.66 0.62 17. Encouraged to attend programs in the community that could help me 0.83 0.68 18. Referred to a dietician, health educator, or counselor 0.59 0.62 19. Told how my visits with other types of doctors, like an eye doctor or surgeon, helped my treatment 0.39 0.33 0.46 0.50 20. Asked how my visits with other doctors were going 0.61 0.74 Loadings ≥0.5 are shown in bold Extraction criteria: Eigenvalues > 1; variation explained 53% Extraction criteria: three factors set; variation explained 58% Items shown in the original English version; Glasgow et al. [13] specifically, the Chronic Care Model at the time when the questionnaires in this study were answered, and only in selected healthcare centers. This might explain the low scores and floor effects on the two subscales. Also, when Table 6 Associations (Spearman’srho)between PACICand comparing different studies it has to be kept in mind that health care quality and outcome measures (Study sample; there are two main versions of the scale. In our study, as n = 2681) in the original study [13], the PACIC scale is rated from Scale PACIC ‘almost never’ to ‘almost always’;the other main version Perceived autonomy support (HCCQ) 0.58*** applied, extends from ‘never’ to ‘always’. Moreover, as commented earlier [12], the clinical significance of differ- Continuity of care (no/yes) ences in scores is not known. Regular physician 0.19*** The subgroup analysis revealed significant associations Regular nurse 0.20*** between PACIC scores and demographic (gender, age, Perceived competence 0.19*** marital status) as well as clinical (duration of disease, Diabetes empowerment 0.24*** medication, service provider) characteristics; only educa- Self-reported health (poor/good) 0.15*** tion was not significantly associated. However, these as- ***p < .001 sociations were weak (≤ 0.14) and, thus, it is possible Simonsen et al. BMC Health Services Research (2018) 18:412 Page 9 of 10 that the statistical significance reflects the larger sample Abbreviations CCM: Chronic Care Model; IQR: Interquartile range; PACIC: Patient Assessment size in our study. Nevertheless, earlier findings are in- of Chronic Illness Care; PCA: Principal component analysis; SD: Standard consistent, also regarding direction of associations. Ac- Deviation; SII: Social Insurance Institution of Finland cordingly, it is unclear whether the scale functions Acknowledgements differently in different subgroups and countries or The authors wish to thank all the participants in the study. We express whether there are differences in care quality or expecta- sincere thanks to Dr. Ritva Laamanen who participated in designing the tions. It has to be kept in mind that the findings we re- ‘Good Diabetes Care’- Study. port are from unadjusted bivariate analysis, as has Funding mostly been the case also in earlier validation studies. The work was supported by the Social Insurance Institution of Finland and As regards convergent validity, the PACIC score the Samfundet Folkhälsan i Svenska Finland. was – as hypothesized and consistent with earlier Availability of data and materials studies [12] – associated with perceived autonomy A license for collecting the data through the SII was granted for the present support, an established measure of quality of chronic study. The data that support the findings of this study are covered by the granted permission, and so are not publicly available, but permission can be care [24]. Moreover, the findings showed the hypothe- requested from the SII. After a granted permission, request for the data can sized relationships with continuity of care and out- be sent to the authors. come measures, thus confirming the construct validity Authors’ contributions of the PACIC scale, as well as of its Finnish transla- NS had the main responsibility for conception and design of the study tion. As there has recently been calls for revisions of as well as for data analysis, interpretation of data and drafting the the PACIC scale because of changes in chronic illness manuscript. AMK and SS contributed to study design, interpretation of data and revising the article. All authors (NS, AMK, SS) contributed to care during the last decade, for example, techno- the collection of study data. All authors (NS, AMK, SS) read and logical advances [35],we suggestthatanother way approved the final version of the manuscript. forward might be to complement the PACIC scale Ethics approval and consent to participate with other quality indicators. Ethics approval was granted by the Ethical Committee of the Hjelt Institute, Our findings are limited by the cross-sectional nature University of Helsinki. The Ethical Committee also approved the consent of the study, meaning that we were not able to assess all procedure. An information letter describing the purpose of the study was sent together with the questionnaire to the respondents by the SII. The aspects of validity and reliability of the PACIC question- letter also stated that participation in the study, i.e. completion of the naire. Thus, we did not assess reproducibility (test-retest questionnaire, was voluntary. Consent to participate in this mailed reliability) or responsiveness. Moreover, we did not questionnaire study was given by the act of returning the questionnaire. interview patients to explore their views on, and under- Competing interests standing of, the translated PACIC scale and its items, The authors declare that they have no competing interests. though the questionnaire, including the PACIC scale, was tested in a pilot study with possibilities for patients Publisher’sNote to add comments. Still, the study has a number of Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. strengths, including a large register-based sample of pa- tients with type 2 diabetes, receiving care in different Author details healthcare settings. Folkhälsan Research Center, P.O. Box 211, 00251 Helsinki, Finland. Department of Public Health, University of Helsinki, P.O. Box 20, 00014 3 4 Helsinki, Finland. University of Skövde, Skövde, Sweden. Department of Conclusion Public Health, University of Turku, Lemminkäisenkatu 1, 20014 Turku, Finland. This study contributes to the current evidence of the Received: 26 January 2016 Accepted: 15 May 2018 utility of the PACIC scale in evaluating chronic ill- ness care, and confirms and extends earlier findings regarding convergent and construct validity of the References 1. Nolte E, McKee M. Caring for people with chronic conditions: a health total PACIC scale. The findings suggest comparable system perspective. In: McKee M, editor. Caring for people with chronic psychometrics properties of the Finnish version of conditions: a health system perspective; 2008. the PACIC questionnaire as of the original English 2. WHO. Global action plan for the prevention and control of noncommunicable diseases 2013–2020. 2013. http://apps.who.int/iris/ instrument and earlier translations, and reasonable bitstream/10665/94384/1/9789241506236_eng.pdf?ua=1. 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Patients’ assessment of chronic illness care: a validation study among patients with type 2 diabetes in Finland

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Medicine & Public Health; Public Health; Health Administration; Health Informatics; Nursing Research
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Abstract

Background: To meet the challenges of the rising prevalence of chronic diseases, such as type 2 diabetes, new approaches to healthcare delivery have been initiated; among these the influential Chronic Care Model (CCM). Valid instruments are needed to evaluate the public health impact of these frameworks in different countries. The Patient Assessment of Chronic Illness Care (PACIC) is a 20-item quality of care measure that, from the perspective of the patient, measures the extent to which care is congruent with the CCM. The aim of this study was to evaluate the psychometric properties of the Finnish translation of the PACIC questionnaire, in terms of validity and reliability, in a large register-based sample of patients with type 2 diabetes. Method: The PACIC items were translated into Finnish in a standardized forward-backward procedure, followed by a cross-sectional survey among patients with type 2 diabetes (response rate 56%; n = 2866). We assessed the Finnish version of the PACIC scale for the following psychometric properties: content validity, internal consistency reliability, convergent and construct validity. We also present descriptive data on total scale as well as predetermined subscale levels. Results: The item-response on the PACIC scale was high with only small numbers of missing data (0.5–1.1%). Ceiling effects were low (0.3–5.3%) whereas floor effects were over 20% for two of the predetermined subscales (problem solving and follow-up/coordination). The total PACIC scale showed a reasonable distribution and excellent internal consistency (alpha 0.94) while the internal consistency of the subscales were at least acceptable (0.74–0.86). The principal component analysis identified a two- or three-factor solution instead of the proposed five- dimensional. In other respects, the PACIC scale showed the hypothesized relationships with quality of care and outcome measures, thus demonstrating convergent and construct validity. Conclusion: A Finnish version of the PACIC scale is now validated in the primary care setting among patients with type 2 diabetes. The findings suggest comparable psychometric properties of the Finnish scale as of the original English instrument and earlier translations, and reasonable levels of validity and reliability. Keywords: Chronic care model, PACIC, Primary care, Quality of care, Type 2 diabetes, Validation * Correspondence: nina.simonsen-rehn@helsinki.fi Folkhälsan Research Center, P.O. Box 211, 00251 Helsinki, Finland Department of Public Health, University of Helsinki, P.O. Box 20, 00014 Helsinki, Finland Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Simonsen et al. BMC Health Services Research (2018) 18:412 Page 2 of 10 Background Methods The rising prevalence of chronic diseases such as type 2 dia- Design and setting betes, worldwide, puts increasing pressure on health sys- We performed a standardized translation of the PACIC tems and especially on primary health care. New models of instrument, followed by a cross-sectional survey among service delivery focusing on patient-centered and coordi- type 2 diabetes patients. This study is part of a larger nated care have been initiated aiming at improving the qual- study of quality of care in diabetes type 2 in five munici- ity of care for persons with chronic illnesses, which is a palities in Southern and Central Finland (the ‘Good Dia- political priority in many countries [1]and endorsed by the betes Care’– Study), with a sample from the register of WHO [2]. The influential Chronic Care Model (CCM) [3] the Social Insurance Institution of Finland (SII). SII is a provides a promising framework to enhance evidence-based government agency in charge of settling benefits under chronic care [4]. It describes a patient-centered care ap- national social security programs. SII keeps a country- proach that is also planned and proactive population-based, wide register of all those persons who have entitlement and thus different from a reactive acute-oriented care. The to a special reimbursement for medicines because of evidence concerning the potential of the model, or compo- chronic diseases, such as diabetes. The sample of the nents of it, to improve care processes, outcomes of care and present study was collected among persons who fulfilled health care resource use is growing [1, 5]and themodel has the following inclusion criteria: been proposed as an effective framework in primary care for improving quality of diabetes care [6–8]. The principles a) had entitlement to a special reimbursement for of the CCM have been included in disease management medicines used in the treatment of type 2 diabetes programs in different countries, for example, the USA, (ICD-10 code, E11) in 2000–2010, and the right Canada, England and Australia [1]and,accordingly, indif- was valid in September 2011 and onward, ferent health-care systems. b) born in 1936–1991 (20–75 years), alive and had no In evaluating the public health impact of new frame- safety prohibition at the time of the data collection, works – like the CCM – in health care, adequate instru- c) Finnish as native language, ments, that is, measures of quality that are reliable and d) one of the five study municipalities as place of valid, are needed [9]. Moreover, instruments covering residence. the patient perspective to quality of care are crucial [10– 12]. The Patient Assessment of Chronic Illness Care Study population (PACIC) has been designed to assess quality of care for Data collection was done as a postal survey. In all, 7575 patients with a chronic illness [13]. It measures the dif- persons fulfilled the inclusion criteria and a sample of ferent dimensions of the CCM from the perspective of 5167 persons was collected based on power-analysis: the patient, focusing on self-management support – in- 2000 persons from each of the two large municipalities cluding collaborative goal setting, problem solving and by random sampling, and all persons from the three follow-up – as well as planned proactive care. small municipalities. There were 2962 (57%) men and The PACIC scale was developed and validated by Glas- 2205 women (43%) in the sample, corresponding to the gow et al. in the USA for patients with a variety of rate of sex in the total population of patients with type 2 chronic diseases [13] and for patients with diabetes type diabetes in the five study municipalities. The question- 2[14]. It has been translated and validated into Dutch, naire, including the Finnish version of PACIC together Spanish, Danish, French, Spanish [9, 15–17] and Ger- with other quality of care measures as well as demo- man (PACIC-5a) [18]. The psychometric performance of graphic and clinical variables, was mailed to respondents the English scale has been studied also outside USA: in in September 2011 by the SII with a reply-paid envelope Australia and the UK [12, 19]. In a study comparing dif- addressed to the research institute. A reminder to ferent generic instruments, the PACIC was evaluated be- non-respondents was mailed in October, and another re- ing among the most promising as regards patients’ minder with a new copy of the questionnaire in Novem- experience of quality of integrated care [11]. ber. The final response rate was 56% (n = 2866). The The Finnish Ministry of Social Affairs and Health pro- study was approved by the Ethical Committee of the poses implementation of the CCM in primary healthcare Hjelt Institute, University of Helsinki, and the SII. centers [20], and as a Finnish validated version of the PACIC scale was not available and earlier studies have suggested the PACIC questionnaire need for validating the scale when adapting it to different The PACIC scale [13] (see Table 2) includes 20 items, healthcare systems, the aim of our study was to evaluate the comprising five subscales: patient activation (items 1–3), psychometric properties of the Finnish translation of the delivery system design/decision support (items 4–6), goal PACIC, in a large register-based sample of patients with type setting/tailoring (items 7–11), problem solving/contextual 2 diabetes, in terms of reliability and validity. (items 12–15) and coordination/follow-up (items 16–20). Simonsen et al. BMC Health Services Research (2018) 18:412 Page 3 of 10 The subscales were not separated in the questionnaire, of respondents with the lowest (floor effect) and the high- and, moreover, the 6-month time frame was extended to est (ceiling effect) possible scores on scale and predeter- 12 months – thus patients could base their responses on a mined subscale levels. Thus, floor and ceiling effects were longer period of care [21]. Each item is rated on a five measured as the percent of patients who reported a mini- point scale (from ‘almost never’ to ‘almost always’). Higher mum (i.e., 1) or maximum (i.e., 5) score on each subscale scores indicate higher quality of care. Each subscale is and on the total PACIC scale. As floor and ceiling effects scored by averaging items completed within the scale, and are present if a substantial proportion of respondents the overall PACIC score is an average across all 20 items. score at either extreme of range, suggesting that a meas- The English version of the PACIC questionnaire was ure is not sensitive to real differences [26], we also used a translated into Finnish in a structured procedure, includ- stricter criterion on the total PACIC scale (< 1.5 or > 4.5). ing forward and backward translations by different Effects under 20% were defined as optimal [26]. translators. The back-translated English version was In terms of reliability, we assessed internal consistency compared with the original version in English – showing at the scale and predetermined subscale levels. Good in- high correspondence – and thereafter a panel of three ternal consistency is needed to justify summarizing of researchers discussed the translations, which resulted in items at both subscale and total scale levels [27]. Cron- a slight revision of the original Finnish translation in bach’s alphas between 0.70 and 0.80 have been proposed order to enhance clarity and cultural equivalence. acceptable and scores over 0.80 as excellent [26]; however, alphas should not exceed 0.95 [27]. Inter-correlations be- Measures administered to assess construct validity tween the predetermined subscales were assessed with We measured empowerment with the Diabetes Em- Spearman’srho. powerment Scale-Short Form (DES-SF): an 8-item scale Possible differences in PACIC scores among sub- that provides an overall assessment of diabetes-related groups (related to demographic and clinical characteris- psychosocial self-efficacy [22, 23] on a 5-point scale ran- tics) were explored with analysis of variance, ging from ‘strongly disagree’ to ‘strongly agree’, with a Kruskal-Wallis or Mann-Whitney U tests, as appropri- Cronbach’s alpha reliability of 0.86 in our data. ate. Moreover, the strengths of these associations were We included the Perceived Competence Scale (PCS) assessed with Spearman’srho. measure [24] to assess perceived self-care competence as We analyzed the factorial structure of the PACIC scale in regards diabetes: a 4-item scale that assesses felt competence the Finnish context with principal component analysis (ex- for diabetes management. In our study, we used a 5-point traction criterion: Eigenvalue > 1) as many item-variables scale ranging from ‘strongly disagree’ to ‘strongly agree,w ’ ith were not normally distributed. Earlier studies have found aCronbach’s alpha reliability of 0.93 in our data [25]. strong correlations between subscales and thus the solution Self-reported health was measured on a single item was rotated using Oblimin rotation. 5-point scale, ranging from excellent to poor. Furthermore, we analyzed convergent and construct We used the Modified/Short Form Health Care Cli- validity based on the following hypotheses. We expected mate Questionnaire (HCCQ) [24] to assess convergent that PACIC scores, i.e. the receipt of patient-centered, validity, a subtype of construct validity. The HCCQ as- structured chronic illness care, would be correlated sesses the degree to which patients perceive their health moderately (> 0.40) with perceived autonomy support- professional to be autonomy supportive (versus control- iveness [12], i.e. scores on the HCCQ, and also positively ling). The scale has 6 items, and we used a 5-point scale correlated to outcomes of care, i.e., diabetes empower- ranging from ‘strongly disagree’ to ‘strongly agree’, with a ment, self-reported health [19, 28] and perceived Cronbach’s alpha reliability of 0.95 in our data [25]. self-care competence [29]. Moreover, we expected that patients having continuity of care as regards their dia- Analyses betes care – that is, a regular primary care physician We assessed the Finnish PACIC scale based on quality and/or nurse – would have higher PACIC scores com- criteria for questionnaires [15, 26, 27] for the following pared to those not being cared for by a regular health psychometric properties: content validity, internal care professional. consistency reliability, convergent and construct validity. We also present descriptive data on predetermined sub- Results scale and total scale levels. The findings are compared Responses were received from 2866 respondents (re- with findings from international validation studies. sponse rate 56%). The mean age of respondents was 63.4 The content validity of the PACIC is based on the CCM (SD 7.8), 55.9% were male and 40.2% had a higher profes- and its aims [13]. We assessed the acceptability and the sional educational level. The mean duration of diabetes interpretability of the translated items by exploring rates type 2 was 8.3 years (SD 6.0). Of the respondents, 2511 of missing data on item level, and assessed the proportion (87.6%) responded to all 20 PACIC items, and 93.5% to at Simonsen et al. BMC Health Services Research (2018) 18:412 Page 4 of 10 least 17, and these 2681 respondents were included in the Principal component analysis (PCA) identified a study sample. In this sample, the mean age was 63.2 (SD two-factor solution, which explained 53% of the variance. 7.7), 55.8% were male, 41% had a higher professional edu- When allowing for a third factor (which almost reached the cational level and the mean duration of diabetes was extraction criterion: Eigenvalue > 1), 58% of the variance 8.3 years (SD 5.9), thus being quite comparable with the was explained (Table 5). In the two-factor solution, Factor 1 whole sample. Municipal primary healthcare centers were is ‘shared decision making and self-care support’ and Factor the main provider of diabetes care for 77% of respondents; 2 ‘planned care and social support,’ whereas in the 18% received their care through occupational healthcare three-factor solution, Factor 1 is ‘shared decision making services and 4% through private healthcare centers. The and satisfaction,’ Factor 2 ‘coordinated care and social majority (75%) used oral diabetes medication. Demo- support,’ and Factor 3 ‘personal goal-setting and graphic and clinical data on the study sample as well as problem-solving’. When performing a PCA separately for the whole sample, in order to discern possible differences, patients receiving care in municipal healthcare centers and are provided in Table 1. those receiving care in occupational or private healthcare The item response on the PACIC scale was high with services (data not shown), an identical three-factor solution only small numbers of missing values (0.5–1.1%), also in as in Table 5 was identified among patients in municipal the whole sample (4–6%; Table 2). Floor effects on the healthcare centers (only the loading values were different) subscales were 5.7–24.9%, over 20% for two of the sub- and nearly an identical two-factor solution among patients scales (problem solving and follow-up/coordination), in occupational or private healthcare services (only one whereas ceiling effects were low (0.3–5.3%). On the total item, no. 4, loaded differently). PACIC scale, floor and ceiling effects were low (2.8/0.1); As regards convergent and construct validity, PACIC when having a stricter lower and upper limit of < 1.5 total scores correlated well with perceived autonomy and > 4.5, the effects were 17.8 and 0.9 (Table 3). supportiveness (Spearman’s rho 0.58) and significantly The mean total PACIC score was 2.32 (SD 0.84) also with the outcome variables, and among these, most and the median 2.3, with an IQR of 1.7–2.9. The total strongly with the Diabetes empowerment scale (0.24; PACIC scale showed a reasonable distribution and Table 6). The correlations with the two other outcome approached normal distribution; however, it was mod- variables – perceived competence and self-reported erately skewed (skewness 0.530, kurtosis − 0.248). The health – were 0.19 respective 0.15. Continuity of care, subscale means ranged from 3.12 (1.06) for delivery that is, having a regular physician and/or having a regu- system design/decision support to 1.79 (0.76) for fol- lar nurse, was associated with higher PACIC scores, low-up/coordination (Table 3). 2.41/2.05 (yes/no; p < 0.001) and 2.47/2.14 (yes/no; p < Alpha reliabilities were acceptable to excellent, and as 0.001), respectively, and the strength of the associations follows: total PACIC scale 0.94 (20 items), patient acti- were 0.19 and 0.20. vation 0.85 (3 items), delivery system design/decision support 0.74 (3 items), goal setting/tailoring 0.80 (5 Discussion items), problem solving/contextual 0.86 (4 items) and fol- Quality improvement in healthcare services, especially in low-up/coordination 0.74 (5 items). primary health care – in order to answer the challenge The inter-correlation (Spearman’s rho) between the of a rising prevalence of chronic conditions within the subscales was moderate to high, being highest between population – is a focus for health policy makers in many the problem-solving and goal-setting scales (0.78) and countries. International quality improvement models goal-setting and decision-support scales (0.71), whereas and measures ensure possibilities to learn from each the follow-up scale was the least correlated with the other, both concerning strengths and weaknesses of other scales, and lowest with the patient-activation scale quality improvement efforts. To be able to track changes (0.51). The goal-setting (0.91) and problem-solving (0.90) in standards of care, as well as to assess the effectiveness scales correlated the highest with the total PACIC scale of interventions, good measures are needed [12]. As and the follow-up scale the least (0.76). concerns patients with chronic conditions, their evalu- The subgroup analysis showed differences in total ation of care quality and improvements in care quality PACIC scores according to gender, age, marital status, are important, meaning that measures that assess specif- medication, duration of disease and service provider ically patients’ perceptions are crucial. In this study, we (Table 4). However, the strengths of these associations have assessed the validity and reliability of a Finnish were modest. As concerns patients’ demographic charac- translation of the internationally validated PACIC scale, teristics, age had the strongest association (Spearman’s as well as its utility, in the Finnish healthcare system. rho − 0.12) with the total PACIC score, and among clin- In summary, our findings showed that the trans- ical characteristics, the strongest association was found lated PACIC scale had a reasonably good validity and between service provider and PACIC (0.14). reliability among patients with type 2 diabetes in the Simonsen et al. BMC Health Services Research (2018) 18:412 Page 5 of 10 Table 1 Demographic and clinical data Study sample n = 2681 Whole sample n = 2866 Characteristic Values are % or mean (SD) Gender Male 55.8 55.9 Age 63.2 (7.7) 63.4 (7.8) Age 27 to 54 13.0 12.7 55 to 64 38.7 37.9 65 to 75 48.3 49.4 Professional education Upper secondary education (vocational school) or less 59.0 59.8 Higher education (college, polytechnic, university) 41.0 40.2 Marital status Single 9.6 9.8 Married/cohabiting 67.0 66.5 Widowed/divorced 23.4 23.7 Duration of diabetes 1–3 years 19.7 19.5 4–10 years 53.1 52.9 More than 10 years 27.3 27.6 Medication Oral drugs only 74.6 74.7 Oral drugs + insulin/insulin only 24.1 24.1 Other (e.g. GLP-1 analog) 1.3 1.2 Service provider responsible for care of diabetes Municipal healthcare center 77.2 77.6 Occupational healthcare service 18.4 18.2 Private healthcare center 4.4 4.3 Perceived autonomy support (HCCQ) range 1–5 3.5 (1.2) 3.6 (1.2) Perceived competence range 1–5 4.2 (0.9) 4.2 (0.9) Diabetes empowerment range 1–5 4.0 (0.7) 4.0 (0.7) Self-reported health Poor 50.7 50.7 Good 26.6 26.4 Very good 22.7 22.9 Continuity of care Regular physician (yes) 74.3 74.5 Regular nurse (yes) 51.5 51.5 1.1% of all respondents (n = 32) used no medication for their diabetes (despite being on the SII register) 1% of all respondents (n = 30) reported not having visited a doctor/nurse for their diabetes during the last 2 years, and 1.4% (n = 40) had a hospital as their main service provider Finnish primary care setting. The study had a satisfac- distributed and the internal consistency was excellent. tory response rate and the majority (88%) of respon- Two of the five predetermined subscales had prob- dents answered all PACIC items, indicating good face lems with floor effects, but all these five subscales validity. The validation analyses, moreover, showed had acceptable to excellent internal consistency. In that scores on the total scale were reasonably well terms of construct validity, the translated PACIC Simonsen et al. BMC Health Services Research (2018) 18:412 Page 6 of 10 Table 2 Missing values on PACIC items Item Missing % (Study Missing % (Whole sample; n = 2681) sample; n = 2866) 1. Asked for my ideas when we made a treatment plan 0.8 4.7 2. Given choices about treatment to think about 0.8 5.3 3. Asked to talk about any problems with my medicines or their effects 0.3 4.5 4. Given a written list of things I should do to improve my health 0.7 5.0 5. Satisfied that my care was well organized 0.7 4.2 6. Shown how what I did to take care of my illness influenced my condition 0.3 4.0 7. Asked to talk about my goals in caring for my illness 0.2 4.4 8. Helped to set specific goals to improve my eating or exercise 0.5 5.0 9. Given a copy of my treatment plan 0.7 5.4 10. Encouraged to go to a specific group or class to help me cope with my chronic illness 0.2 5.0 11. Asked questions, either directly or on a survey, about my health habits 0.3 4.7 12. Sure that my doctor or nurse thought about my values and my traditions when they recommended 1.1 6.0 treatments to me 13. Helped to make a treatment plan that I could carry out in my daily life 0.4 5.3 14. Helped to plan ahead so I could take care of my illness even in hard times 0.7 6.0 15. Asked how my chronic illness affects my life 0.3 5.4 16. Contacted after a visit to see how things were going 0.2 5.1 17. Encouraged to attend programs in the community that could help me 0.3 5.4 18. Referred to a dietician, health educator, or counselor 0.4 5.4 19. Told how my visits with other types of doctors, like an eye doctor or surgeon, helped my treatment 0.2 4.8 20. Asked how my visits with other doctors were going 0.3 5.2 Items shown in the original English version; Glasgow et al. [13] scale, as hypothesized, had significant associations different studies have been attributed to methodological dif- with care quality, i.e., perceived autonomy supportive- ferences, but also to real differences between healthcare ness – indicating convergent validity – and continuity systems and samples of patients [17]. Spicer and colleagues of care, as well as outcome measures. The PCA, how- [21] have raised the issue whether the PACIC scale is a for- ever, revealed a two- or three-factor structure in the mative rather than a reflective measure, and thus ques- current Finnish healthcare context, instead of the pro- tioned the suitability of factor analysis and internal posed five-dimensional. reliability estimates. Cramm and Nieboer [34], based on In the majority of earlier studies, the five dimension their findings in a follow-up study, however, argue that the structure of the PACIC scale has not been confirmed. Stud- scale can be regarded a reflective measure. Fan et al. [33] ies in different populations and healthcare systems have suggestthatauniversallyapplicable factorial structure suggested also one-, two- and four-dimensional structures might not exist. In our study, we found different factorial [17, 19, 30–33]. Differences in the PACIC scale structure in structures among patients receiving care by different Table 3 Descriptive data on subscales and complete PACIC scale (Study sample; n = 2681) a c Scale Missing % Floor/Ceiling % Mean (SD) Median IQR (range 1–5) (range 1–5) Patient activation (3 items; no missing items allowed) 1.5 17.2/4.7 2.54 (1.21) 2.3 1.7–3.3 Delivery system design/decision support (3 items; no missing items allowed) 1.5 5.7/5.3 3.12 (1.06) 3.3 2.3–4.0 Goal setting/tailoring (5 items; 1 missing item allowed) 0 12.7/0.6 2.25 (0.93) 2.2 1.4–2.8 Problem solving/contextual (4 items; 1 missing item allowed) 0.4 20.2/2.6 2.29 (1.10) 2.0 1.3–3.0 Follow up/coordination (5 items; 1 missing item allowed) 0.1 24.9/0.3 1.79 (0.76) 1.6 1.2–2.2 PACIC total score (20 items; 3 missing items allowed) 0.1 2.8/0.1 (17.8/0.9 ) 2.32 (0.84) 2.3 1.7–2.9 Floor and ceiling effects = percent of respondents attaining minimum or maximum scores (1/5) Floor and ceiling effects = percent of respondents attaining PACIC total scores < 1.5/> 4.5 Interquartile range (IQR) = first to third quartile Simonsen et al. BMC Health Services Research (2018) 18:412 Page 7 of 10 Table 4 Results for PACIC by demographic and clinical characteristics (Study sample; n = 2681) Characteristic PACIC Mean (SD) P-value Spearman’s rho P-value Gender Men 2.36 (0.84) 0.001 − 0.07 0.000 Women 2.26 (0.84) Age 27–54 2.49 (0.89) 0.000 −0.12 0.000 55–64 2.40 (0.87) 65–75 2.21 (0.84) Professional education Upper secondary education or less 2.31 (0.84) 0.90 0.01 0.806 Higher education 2.32 (0.84) Marital status Single 2.42 (0.87) 0.000 −0.10 0.000 Married/cohabiting 2.34 (0.84) Widowed/divorced 2.16 (0.80) Duration of diabetes ≤ 3 years 2.41 (0.85) 0.028 − 0.05 0.011 4–10 years 2.32 (0.85) > 10 years 2.27 (0.83) Medication Oral drugs only 2.29 (0.83) 0.001 0.06 0.002 Oral drugs + insulin/insulin only/other 2.41 (0.86) Service provider responsible for care Municipal healthcare 2.25 (0.82) 0.000 0.14 0.000 Occupational or private healthcare 2.54 (0.89) a b Kruskal-Wallis test Mann-Whitney U test healthcare providers. This might suggest differences in care the results of the original English version [13]. As in our structures and processes, or, alternatively, as suggested by data, the subscales delivery system design/decision sup- Fan et al. [33], different priorities as concerns chronic dis- port and/or follow-up/coordination have had the lowest ease care among the patients. Some earlier studies have internal consistencies in earlier validation studies as well raised questions about the utility of the PACIC subscales, [12, 13, 15, 18, 31], suggesting that this does not reflect and propose the use of the PACIC total score as an overall the translation process nor the Finnish primary health- experience of chronic illness care [14, 30, 33, 35]. Primary care context [12]. care personnel’s perceptions of implementation of the The mean scores on the total PACIC scale and the sub- CCM components seem to be only weakly, though for the scales were relatively low in our sample and comparable most part consistently, associated with patients’ perceptions with the scores in patients with type 2 diabetes in of CCM (PACIC and its subscales) [36]. More research is Denmark [37] and patients with long-term conditions in needed to determine the degree to which PACIC and UK [12]; in general, lower than those reported elsewhere. possibly the subscales are related to patient outcomes. Consistent with earlier studies [12, 13], especially fol- Moreover, comparing the relative contribution of the pre- low-up/coordination activities were rated low, showing determined subscales in this regard with the contribution problems with floor effects, as did also the problem solving of subscales derived from exploratory factor analysis in the subscale in our study. According to Glasgow and col- patient population of interest could be worthwhile. leagues [13], these two subscales, as well as the goal setting Although the five dimension factorial structure was scale, form the core of modern chronic care, but are sel- not established, the predetermined subscales, as well as dom present in the absence of specific quality improve- the total PACIC scale, had good internal consistencies: ment efforts. Although there have been care quality Cronbach’s alpha being 0.94 for the total scale, and vary- improvement initiatives in primary healthcare in Finland, ing from 0.74 to 0.86 for the subscales, thus confirming there were still ongoing development work to implement, Simonsen et al. BMC Health Services Research (2018) 18:412 Page 8 of 10 Table 5 Factor loadings of the PACIC items using Oblimin rotation (Study sample; n = 2681) a b PCA 1 PCA 2 Predetermined subscales and items F1 F2 F1 F2 F3 Patient activation 1. Asked for my ideas when we made a treatment plan 0.86 0.74 2. Given choices about treatment to think about 0.73 0.63 3. Asked to talk about any problems with my medicines or their effects 0.76 0.73 Delivery system design/Decision support 4. Given a written list of things I should do to improve my health 0.43 −0.63 5. Satisfied that my care was well organized 0.82 0.81 6. Shown how what I did to take care of my illness influenced my condition 0.85 0.70 Goal setting/Tailoring 7. Asked to talk about my goals in caring for my illness 0.74 0.50 −0.44 8. Helped to set specific goals to improve my eating or exercise 0.57 −0.61 9. Given a copy of my treatment plan 0.45 −0.70 10. Encouraged to go to a specific group or class to help me cope with my chronic illness 0.78 0.55 −0.41 11. Asked questions, either directly or on a survey, about my health habits 0.57 0.37 −0.41 Problem solving/Contextual 12. Sure that my doctor or nurse thought about my values and my traditions when they 0.73 0.64 recommended treatments to me 13. Helped to make a treatment plan that I could carry out in my daily life 0.51 0.39 −0.64 14. Helped to plan ahead so I could take care of my illness even in hard times 0.35 0.55 −0.60 15. Asked how my chronic illness affects my life 0.43 0.44 −0.39 Follow-up/Coordination 16. Contacted after a visit to see how things were going 0.66 0.62 17. Encouraged to attend programs in the community that could help me 0.83 0.68 18. Referred to a dietician, health educator, or counselor 0.59 0.62 19. Told how my visits with other types of doctors, like an eye doctor or surgeon, helped my treatment 0.39 0.33 0.46 0.50 20. Asked how my visits with other doctors were going 0.61 0.74 Loadings ≥0.5 are shown in bold Extraction criteria: Eigenvalues > 1; variation explained 53% Extraction criteria: three factors set; variation explained 58% Items shown in the original English version; Glasgow et al. [13] specifically, the Chronic Care Model at the time when the questionnaires in this study were answered, and only in selected healthcare centers. This might explain the low scores and floor effects on the two subscales. Also, when Table 6 Associations (Spearman’srho)between PACICand comparing different studies it has to be kept in mind that health care quality and outcome measures (Study sample; there are two main versions of the scale. In our study, as n = 2681) in the original study [13], the PACIC scale is rated from Scale PACIC ‘almost never’ to ‘almost always’;the other main version Perceived autonomy support (HCCQ) 0.58*** applied, extends from ‘never’ to ‘always’. Moreover, as commented earlier [12], the clinical significance of differ- Continuity of care (no/yes) ences in scores is not known. Regular physician 0.19*** The subgroup analysis revealed significant associations Regular nurse 0.20*** between PACIC scores and demographic (gender, age, Perceived competence 0.19*** marital status) as well as clinical (duration of disease, Diabetes empowerment 0.24*** medication, service provider) characteristics; only educa- Self-reported health (poor/good) 0.15*** tion was not significantly associated. However, these as- ***p < .001 sociations were weak (≤ 0.14) and, thus, it is possible Simonsen et al. BMC Health Services Research (2018) 18:412 Page 9 of 10 that the statistical significance reflects the larger sample Abbreviations CCM: Chronic Care Model; IQR: Interquartile range; PACIC: Patient Assessment size in our study. Nevertheless, earlier findings are in- of Chronic Illness Care; PCA: Principal component analysis; SD: Standard consistent, also regarding direction of associations. Ac- Deviation; SII: Social Insurance Institution of Finland cordingly, it is unclear whether the scale functions Acknowledgements differently in different subgroups and countries or The authors wish to thank all the participants in the study. We express whether there are differences in care quality or expecta- sincere thanks to Dr. Ritva Laamanen who participated in designing the tions. It has to be kept in mind that the findings we re- ‘Good Diabetes Care’- Study. port are from unadjusted bivariate analysis, as has Funding mostly been the case also in earlier validation studies. The work was supported by the Social Insurance Institution of Finland and As regards convergent validity, the PACIC score the Samfundet Folkhälsan i Svenska Finland. was – as hypothesized and consistent with earlier Availability of data and materials studies [12] – associated with perceived autonomy A license for collecting the data through the SII was granted for the present support, an established measure of quality of chronic study. The data that support the findings of this study are covered by the granted permission, and so are not publicly available, but permission can be care [24]. Moreover, the findings showed the hypothe- requested from the SII. After a granted permission, request for the data can sized relationships with continuity of care and out- be sent to the authors. come measures, thus confirming the construct validity Authors’ contributions of the PACIC scale, as well as of its Finnish transla- NS had the main responsibility for conception and design of the study tion. As there has recently been calls for revisions of as well as for data analysis, interpretation of data and drafting the the PACIC scale because of changes in chronic illness manuscript. AMK and SS contributed to study design, interpretation of data and revising the article. All authors (NS, AMK, SS) contributed to care during the last decade, for example, techno- the collection of study data. All authors (NS, AMK, SS) read and logical advances [35],we suggestthatanother way approved the final version of the manuscript. forward might be to complement the PACIC scale Ethics approval and consent to participate with other quality indicators. Ethics approval was granted by the Ethical Committee of the Hjelt Institute, Our findings are limited by the cross-sectional nature University of Helsinki. The Ethical Committee also approved the consent of the study, meaning that we were not able to assess all procedure. An information letter describing the purpose of the study was sent together with the questionnaire to the respondents by the SII. The aspects of validity and reliability of the PACIC question- letter also stated that participation in the study, i.e. completion of the naire. Thus, we did not assess reproducibility (test-retest questionnaire, was voluntary. Consent to participate in this mailed reliability) or responsiveness. Moreover, we did not questionnaire study was given by the act of returning the questionnaire. interview patients to explore their views on, and under- Competing interests standing of, the translated PACIC scale and its items, The authors declare that they have no competing interests. though the questionnaire, including the PACIC scale, was tested in a pilot study with possibilities for patients Publisher’sNote to add comments. Still, the study has a number of Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. strengths, including a large register-based sample of pa- tients with type 2 diabetes, receiving care in different Author details healthcare settings. Folkhälsan Research Center, P.O. Box 211, 00251 Helsinki, Finland. Department of Public Health, University of Helsinki, P.O. Box 20, 00014 3 4 Helsinki, Finland. University of Skövde, Skövde, Sweden. Department of Conclusion Public Health, University of Turku, Lemminkäisenkatu 1, 20014 Turku, Finland. This study contributes to the current evidence of the Received: 26 January 2016 Accepted: 15 May 2018 utility of the PACIC scale in evaluating chronic ill- ness care, and confirms and extends earlier findings regarding convergent and construct validity of the References 1. Nolte E, McKee M. Caring for people with chronic conditions: a health total PACIC scale. The findings suggest comparable system perspective. In: McKee M, editor. Caring for people with chronic psychometrics properties of the Finnish version of conditions: a health system perspective; 2008. the PACIC questionnaire as of the original English 2. WHO. Global action plan for the prevention and control of noncommunicable diseases 2013–2020. 2013. http://apps.who.int/iris/ instrument and earlier translations, and reasonable bitstream/10665/94384/1/9789241506236_eng.pdf?ua=1. 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BMC Health Services ResearchSpringer Journals

Published: Jun 5, 2018

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