The cultural differences in transition assessment: Evaluation of TRANSITION-Q and STARx scales on Turkish rheumatic patients

Abstract

Objectives: This study aimed to assess the readiness of our patient population for the transfer to adult care and the applicability of the TRANSITION-Q and STARx scales to the Turkish adolescent patient population.

Patients and methods: A total of 153 patients (92 males, 61 females; mean age: 15.5±1.9 years; range, 12 to 18 years) were included in the study between September 15, 2021, and December 15, 2021. The patients were divided into two groups according to age groups: 12 to 15 years old and 16 to 18 years old. The patients were also divided into four groups according to their diagnosis: connective tissue diseases, juvenile idiopathic arthritis, vasculitis, and autoinflammatory diseases. The TRANSITION-Q and STARx scales were administered face-to-face by a nurse and a doctor. The transition readiness of the patients was evaluated according to their scores.

Results: Sixty-nine (45%) patients were in the 12 to 15 age group, and 84 (55%) were in the 16 to 18 age group. Eight-four (54.9%) patients had juvenile idiopathic arthritis, 47 (30.7%) patients had an autoinflammatory disease, 14 (9.2%) patients had vasculitis, and eight (5.2%) patients had a connective tissue disease. There was no significant difference in the scale scores according to disease groups and sexes in both scales. Considering the age of the patients, the mean scores of the patients in the 16 to 18 age group were found to be significantly higher compared to the 12 to 15 age group for both the TRANSITION-Q (74.3±13.3 vs. 65.4±9.6, p<0.001) and STARx scales (51.8±8.1 vs. 44.8±9.1, p<0.001). Cronbach's alpha score was 0.71 for the STARx scale and 0.79 for the TRANSITION-Q scale.

Conclusion: TRANSITION-Q and STARx scales could guide the Turkish patient population in determining the pretransition needs of patients in planning individualized transition processes.

Introduction

Transitional care delineates the systematic progression of adolescents enduring chronic physical and medical ailments from pediatric healthcare paradigms to adult-oriented healthcare frameworks, characterized by deliberate and well-structured planning.[1] This terminology entered the medical literature approximately 35 years ago,[2] finding its way into rheumatology discourse after about a decade.[3] In recent years, there has been a notable uptick in the number of patients migrating from pediatric rheumatology clinics to adult counterparts, a trend fueled by advancements in patient management and diagnostic procedures.[4,5] Hence, the implementation of efficacious transitional care protocols has emerged as a vital component within pediatric rheumatology clinical follow-up routines.

Childhood-onset rheumatic diseases, including juvenile idiopathic arthritis (JIA), juvenile systemic lupus erythematosus, juvenile dermatomyositis, and familial Mediterranean fever, harbor the potential to significantly impair health and life quality into adulthood. Transitional adversities encountered by individuals with chronic ailments invariably exert negative repercussions on cardiovascular well-being, growth trajectories, and fertility prospects.

In response, a series of validated transition scales have been developed. Crucially, these incorporate scales dedicated to gauging the transitional readiness of adolescents, facilitating the identification of potential inadequacies and thus enabling clinicians to concentrate their efforts accordingly. Noteworthy examples of these scales encompass the Transition Readiness Assessment Questionnaire (TRAQ),[6] the TRxANSITION Index,[7] the STARx (Self-Management and Transition to Adulthood with Rx: Treatment) scale,[8] the Am I ON TRAC for Adult Care scale,[9] the TRANSITION-Q,[10] and the Adolescent Assessment of Preparation for Transition.[11] It is imperative that these scales retain clinical relevance and conform to stringent psychometric evaluations.

In light of prevalent cultural disparities, it becomes imperative to scrutinize the suitability of scale questions across different global populations. Regrettably, scholarly endeavors in this regard remain scant at present. This study seeks to bridge this existing research gap. We endeavor to evaluate not only the readiness of our patient demographic for transitioning to adult healthcare facilities but also the feasibility of applying these scales within the context of the Turkish adolescent patient population.

Patients and Methods

The cross-sectional study included 153 patients (92 males, 61 females; mean age: 15.5±1.9 years; range, 12 to 18 years) who sought medical attention at the pediatric rheumatology clinic of the Umraniye Training and Research Hospital from September 15, 2021, to December 15, 2021. A collaborative assessment employing the TRANSITION-Q and STARx scales was conducted through face-to-face interviews with medical professionals, encompassing a nurse and a doctor. The participant cohort was divided into two age groups: 12 to 15 years and 16 to 18 years. Furthermore, they were classified into four distinct categories based on their diagnoses: connective tissue diseases (CTDs), JIA, vasculitis, and autoinflammatory diseases (AIDs). Clarifications were provided for queries that were not comprehended by the patients. The questions were clarified in a manner that did not create bias, and no leading was implemented.

The TRANSITION-Q scale, comprising 14 questions, was conceived utilizing a modern psychometric approach predicated on the Rasch model at the McMaster Children's Hospital in Canada.[1] The instrument evaluates individuals' proficiency in managing their medical care, their interactions with healthcare professionals, chronic disease awareness, and their competency in undertaking technical responsibilities, such as organizing appointments and managing prescriptions. Participants articulate their responses utilizing a scale ranging from “never” to “always,” which correspond to scores between 0 and 2. The cumulative scores vary from 0 to 100, where elevated scores are indicative of proficient self-management skills. The maximal attainable score is 100, with the Canadian study reporting a Cronbach alpha value of 0.85 for this scale.[1] Based on the scores accrued, the preparedness for transition is ascertained. No upper threshold exists, delineating a lack of readiness for transition. This facilitates the identification of participants' strengths and weaknesses throughout the transitional preparedness phase, enabling targeted intervention to rectify identified inadequacies. The requisite license for the TRANSITION-Q was procured from McMaster University.

The STARx scale, originating from the University of North Carolina at Chapel Hill School of Medicine, was devised to assimilate data on self-management and transition in adolescents grappling with chronic illnesses.[2] It encompasses 18 items distributed across six focal areas, assessing the patients' readiness for transition. These domains comprise medical treatment management, communication with physicians, collaborative engagement during consultations, adult health responsibilities, resource utilization, and disease knowledge. Each item is scored on a 5-point Likert scale, culminating in a maximum potential score of 90. A higher score is synonymous with an advanced stage of readiness for transition. The original study documenting the scale's development reported a Cronbach alpha value of 0.8.[2]

The translation of the TRANSITION-Q and STARx surveys into Turkish was conducted by two researchers. Both researchers possessed advanced level proficiency in English. Professional assistance was not sought.

Statistical analysis

The data were analyzed utilizing IBM SPSS version 21.0 software (IBM Corp., Armonk, NY, USA). The validity of the Turkish versions of the TRANSITION-Q and STARx scales was ascertained through the assessment of internal consistency, demonstrated by Cronbach’s alpha coefficient, and test-retest reliability, as delineated by the intraclass correlation coefficient. The Cronbach’s alpha values were interpreted as follows: <0.5, unacceptable; 0.5 to 0.59, poor; 0.6 to 0.69, questionable; 0.7 to 0.79, acceptable; 0.8 to 0.89, good; 0.9 to 1.0, excellent. Categorical variables were expressed as frequencies and percentages, whereas continuous variables were articulated as mean ± standard deviation (SD) or median (interquartile range), as per their distribution. Comparative analyses between groups were conducted using Student’s t-test or one-way analysis of variance. Logistic regression analysis facilitated the identification of predictors for high and low scores. A p-value <0.05 was established as the threshold for statistical significance.

Results

The mean follow-up duration and disease duration were 2.71±1.31 years and 4.63±3.48 years, respectively. The onset of disease manifested at a mean age of 10.71±3.88 years. Sixty-nine (45%) patients fell within the 12 to 15 years category, and 84 (55%) were classified under the 16 to 18 years group.

Diagnostically, patients were clustered into four categories: 84 (54.9%) were diagnosed with JIA, 47 (30.7%) had AID, 14 (9.2%) manifested vasculitis, and eight (5.2%) had a CTD. Of these, 61 (39.9%) were prescribed biological disease-modifying antirheumatic drugs (DMARDs), while 92 (60.1%) were either on conventional DMARDs or were undergoing drug-free monitoring.

The mean score derived from the TRANSITION-Q scale was 70.3±12.6. No discernible differences were noted between sexes or amongst distinct disease groups in relation to the TRANSITION-Q score (Table 1). Moreover, no significant disparity was observed between scores of patients administered biological DMARDs and their counterparts. Notably, patients within the age bracket of 16 to 18 years scored significantly higher compared to those aged 12 to 15 years, with mean scores of 74.3±13.3 and 65.4±9.6, respectively, indicating a p-value of <0.001 (Table 1). Most patients consistently responded with “always” to Item 7 (I ask the doctor or nurse questions; 96%) and to Item 1 (I answer a doctor’s or nurse’s questions; 92%). Conversely, Item 12 (I drop off or pick up my prescriptions when I need medicine) garnered the least number of “always” responses (12%; Tables 2 and 3). The Turkish translation of the scale, as administered to our cohort, demonstrated a promising Cronbach's alpha coefficient of 0.79.

Table 1. Mean scores of TRANSITION-Q and STARx scales by diseases and age groups

Table 2. Results of TRANSITION-Q items by disease groups

Table 3. Results of TRANSITION-Q items by age groups

The mean score registered on the STARx scale was 48.6±9.3. Similar to the TRANSITION-Q findings, no significant sex disparity was observed, nor were there notable differences between disease groups and the STARx score (Table 1). Furthermore, no considerable variations were noted between scores upon examination of drug groups. A noteworthy observation was that the STARx scores for patients aged 16 to 18 years superseded those of patients aged 12 to 15 years, with respective mean scores of 51.8±8.1 and 44.8±9.1 and a significant p-value of <0.001 (Table 1). An analysis of responses to individual questions revealed a predominant selection of “sometimes” for queries related to medical treatment management (Questions 2, 5, 8, and 16), with a mean score of 9.4±2.1. The questions revolving around adult health responsibilities (Questions 17 and 18) received the lowest scores, with a mean of 4.9±2.1. Patients mostly reported feeling “somewhat difficult” when addressing concerns related to appointment scheduling, prescription adherence, medication monitoring, and adapting to adult clinics. While responses to questions regarding doctor-nurse communication (Questions 13, 14, and 15) were generally favorable, indicating ease of communication, the group yielded a mean score of 8.4±3.1. The questions concerning disease information (Questions 10, 11, and 12) received a mean score of 9.5±2.2, predominantly being rated as “a lot,” thus marking this set as having the highest mean score. Mutual negotiation during appointments (Questions 1, 3, and 4) had a mean score of 7.5±2.7, whereas resource utilization evaluation (Questions 6, 7, and 9) received a mean score of 6.03±2.8 (Table 4). The Turkish rendition of the STARx scale, when applied to our cohort, yielded a Cronbach's alpha coefficient of 0.71, indicating a satisfactory level of internal consistency.

Table 4. Results of STARx questions by disease groups

Discussion

Evaluating the readiness of patients for transitional care and heightening the awareness of transition mechanisms are paramount, necessitating tools and guidelines reinforced by empirical data. In our locale, however, tools for assessing adolescents with chronic diseases are rather scarce, with limited studies undertaken in this area.[5]

In the pursuit of alleviating the strain on the healthcare system, fostering a smooth transition from pediatric to adult rheumatology care for patients and their families stands as a crucial initial step. Recent investigations and guideline propositions advocate initiating the transition phase during early adolescence, typically around 10 to 13 years of age.[3,12] This stance is echoed in the national directives of countries including the USA, Canada, and the UK.[13-15]

Although there has been a surge in awareness surrounding this issue in recent years, one study revealed that merely half of the patients were consulted regarding transition, and a nominal fraction could manage their ailments autonomously.[16] The significance and recognition of transitional care are witnessing a global upswing,[17] yet consensus remains elusive when it comes to determining suitable preparedness measures and tools for effective transition strategizing.

In the present study, we scrutinized two separate scales. A notable pattern emerged from both scales, highlighting that tasks necessitating personal responsibility, such as attending examinations alone or scheduling outpatient clinic appointments, were particularly challenging for patients. This aligns with the firsthand observations of pediatricians in Türkiye, where children predominantly attend clinical follow-ups accompanied by their parents, who also tend to oversee medication administration and monitoring. Contrary to Western norms, Turkish children generally reside with their families well into adulthood, resulting in a family-centric approach to disease management, wherein the entire family shoulders the responsibility of medical treatment.

Supporting this notion, Aytaç et al.[18] found family behaviors to be consonant with the prevailing cultural milieu. Similarly, a study by Suris et al.[19] emphasized a heightened protective inclination among parents of children with chronic conditions. These findings potentially influence the lower scores observed in questions probing individualistic responsibilities. Within our study, neither disease groups nor genders demonstrated discernible differences in scale scores. Moreover, the usage of biological DMARDs, reported by 40% of patients, did not influence scale scores.

It appears that pivotal factors in gearing up for transition include lifestyle, personality traits, upbringing methods, parental attitudes, and cultural variables, transcending the severity of the disease. European Alliance of Associations for Rheumatology (EULAR)/Paediatric Rheumatology European Society (PReS) guidelines encourage family involvement in the transition process alongside physicians and patients.[12] These scales might aid in determining the extent of family engagement in crafting patient-specific transition plans.

Upon comparing age brackets across both scales, it was observed that late adolescents garnered higher transition readiness scores. This demographic exhibits enhanced cognitive functions compared to their younger counterparts, with a marked progression in independent decision-making capabilities during late adolescence.[20] This substantial discrepancy in scores is congruent with child development literature.

In terms of internal consistency, both scales presented acceptable Cronbach's alpha scores. Specifically, the TRANSITION-Q scale exhibited a noteworthy alpha score of 0.79, underscoring one of its strengths. Another merit of this scale is its concise duration and straightforward, comprehensible queries, making it a more favorable choice compared to the STARx scale.

Globally, several transition scales have undergone validation. In our region, the TRAQ scale was validated.[21] This study pioneers the validation of STARx and TRANSITION-Q scales in our country, introducing two additional viable scales besides TRAQ. We posit that these scales could facilitate the formulation of policies concerning transition preparation, an area garnering escalating importance globally.

However, this study embodies some limitations, primarily stemming from its single-center framework. Despite our clinic serving as a referral center in Türkiye most populous city, accommodating patients nationwide, the singular center aspect might not encapsulate the entire spectrum of Turkish adolescent patients. Furthermore, the study did not encompass an evaluation of the educational background and socioeconomic status of the patients and their families within the scales. Lastly, in the Turkish healthcare context, children below 18 enjoy complimentary healthcare and insurance coverage, absolving them of any financial obligations. However, after the age of 18, individuals who discontinue their education or remain unemployed lose these benefits, a factor not assessed in the utilized scales.

In conclusion, the findings postulate that the TRANSITION-Q and STARx scales could act as pivotal tools in orchestrating personalized transition plans for patients, thereby identifying their pretransition requisites.

Citation: Yiğit RE, Çağlayan Ş, Sözeri B. The cultural differences in transition assessment: Evaluation of TRANSITION-Q and STARx scales on Turkish rheumatic patients. Arch Rheumatol 2024;39(2):255-264. doi: 10.46497/ ArchRheumatol.2024.10379.

The study protocol was approved by the Ümraniye Training and Research Hospital Clinical Research Ethics Committee (date: 28.10.2021, no: B.10.1.TKH.4.34.H.GP.0.01/299). The study was conducted in accordance with the principles of the Declaration of Helsinki.

A written informed consent was obtained from the patients and the parents and/or legal guardians of the patients.

Conceptualized and designed the study, drafted the initial manuscript, and had full access to all the data in the study: R.E.Y., B.S.; All authors conducted the data analyses, drafted the initial manuscript, and had full access to all the data in the study. All authors reviewed and revised the manuscript and approved the final version of the manuscript.

The authors declared no conflicts of interest with respect to the authorship and/or publication of this article.

The authors received no financial support for the research and/or authorship of this article.

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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