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Psycho-social Management of Diabetes in Children and Young people with Diabetes
ASSIGNMENT -2 (QUESTIONNAIRE)
Option-A) Critically appraise existing health questionnaires / tools for use by young people and describe their potential use, in the context of other ways of supporting communication within the consultation.
Diabetes Control and Complications trial (DCCT) has proven the importance of tight glycaemic control in preventing the long term diabetic complications. (DCCT, 1993). In spite of achievements in the field of pharmaceutical and technological advances in managing insulin dependent diabetes , there are significant short comings between recommended and actual treatment outcomes, especially glycaemic control. This is attributed mainly to difficulties adhering to the recommended diabetes treatment programme especially in adolescent and young people.(Beck et al., 2012)
ISPAD consensus guidelines on the other hand stressed the importance of psychosocial elements in achieving this tighter glycaemic control(Alan M Delamater et al.) A number of previous systematic reviews of literature has demonstrated the efficacy of psycho social and behavioral interventions including promoting parent adolescent communications in improving glycaemic control(Winkley et al., 2006)The SEARCH trial showed increased occurrence of depression (Mild -14%, Moderate to severe -9%) in young people with diabetes (Lawrence et al., 2006) The prevalence of eating disorder was found to be twice common in children and young people(CYP) with type 1Diabetes, which is an indirect manifestation of underlying depression(Young). Moreover early onset T1D, with associated severe hypoglycaemia and chronic hyper glycaemia affect the neuro cognitive remodeling and school and academic achievements(Perantie et al.). If proper and timely intervention are not offered , these maladjustment problems can affect diabetes management in early life resulting in irreversible complications(Wysocki et al., 1992). Hence it is well recognized the importance of assessing the health related quality of life (HRQoL)in clinical trials as well as the routine diabetic care in day to day life(Alan M Delamater et al.). as tools to assess the quality of life (QoL) of CYP with diabetes is very few , those used in adults were modified for paediatric use (eg: diabetes quality of life-DQoL)(Ingersoll & Marrero, 1991)
To critically appraise the diabetes related pre-clinical health questionnaires in facilitating the communication between the CYP and the diabetes health care team.
Does the use of pre-clinical health questionnaire (I) , improve the communication in consultation (O) in young people with T1D(P) compared to the conventional ways of communication by health care team(C) ?
1. Literature search of databases including Medline and Embase to identify the evidences on diabetes related health questionnaires for use in CYP.
2. To critically appraise these evidences in comparison to the traditional means of communication between health care team and CYP.
3. To synthesise evidences and assess its use in clinical practice and also enumerating its limitations.
The literature was carried out using key words – health questionnaire, health education/patient education, patient wellbeing and quality of life. Two clinically validated and widely used health questionnaire tailored for use in paediatric population are identified.
1) Assessing diabetes related quality of life for youth with type 1 diabetes in routine clinical care: the MIND(Monitoring Individual Needs in Diabetes) Youth questionnaire (MY-Q)(de Wit et al., 2012)
2) PedsQL in Type 1 and Type 2 Diabetes (Varni et al., 2003)
These are further critically appraised in detail in accordance as part of this assignment. The Critical Appraisal Skills Programme (CASP) tool on qualitative research study was used for this purpose (Appendix-1 CASP, 2016)
Critical appraisal of the literature
Study-1: MIND Youth questionnaire (de Wit et al., 2012).
This study was carried out in Dutch population (CYP in the age group 10-18 years). It is a qualitative research study aimed to develop and validate MIND Youth questionnaire (MY-Q) and also to compare with PedsQL (generic +diabetic specific) to evaluate its psychometric characteristics. MIND Youth questionnaire is the first self-reported HRQoL questionnaire coined for use in children and young people with diabetes. It was developed from already existing questionnaires like DQoL, PedsQL,WHO-5 (Appendix-2). It contains 36 items pertaining to various domains of life , which also incorporates HbA1c value and its correlation to the QoL. It is validated through interview process of 22 youths. Then 84 youths completed both the MY-Q and PedsQL questionnaires online. Internal consistency of the items within a set was assessed using Cronbachs-. The validity was assessed using Pearson or Spearman correlation coefficient with p<0.05 considered significant.
Face validity of the study was considered generally good as it was easy to understand apart from4 questions, the wordiness of which was slightly changed afterwards. It took 11 minutes to complete the whole questionnaire ranging from 4 to 15 minutes. Youths also felt it was a useful idea to assess their QoL as part of the consultations with their diabetic team. Analysis of psychometric properties received 40% online completion rate. The age range of the participants were 10-18 years and the duration of their diabetes was 6.44.0 yr. The mean HbA1c level was 8.11.4%. with majority of the participants on intensive insulin treatment regimen. Nearly ¾ of them were on insulin pump. The reliability of the total questionnaire as evidenced by Cronbach’s alpha was 0.80 and for most of the subscales were >0.60 with the exemption of body image , eating behavior and responsibility. There were strong association between higher total scores of MY-Q and PedsQL( r=0.58, p<0.001).There was also strong association between MY-Q and diabetes questionnaire (r=0.71, p<0.001). this in fact represents the validity of MY-Q questionnaire. The MY-Q score was low in those with high A1C levels (r=-0.35, p<0.001) and girls showed higher incidence of eating disorders and worries.
Strengths and limitations
This questionnaire has shown comparatively good strength in terms of incorporating several relevant domains and giving outcomes which are practical. It is short and addresses areas which are rampant in teens like depression, eating disorders. Methodology and statistical analysis found appropriate for the study design. Its Limitation include lack of cross validation , requiring non-Dutch population with appropriate translation. Training and resources required for its application could be one of the hurdle in its routine clinical practice.
Study-2: PedsQL (Varni et al., 2003)
This qualitative research study is designed to incorporate the beneficial effect of PedsQL4.0 Generic core scales in type1 and type 2 diabetes and PedsQL3.0 diabetes module in type 1 diabetes. The participants in the diabetes sample were children between 5-18 years and parents of children whose age are between 2-18 years diagnosed with type 1 or type 2 diabetes. It is shown that healthy children would have higher HRQoL and fewer diabetic symptoms. The primary objective of PedsQL is to measure health related quality of life in children and adolescents between 2-18 years , the child self-report is used in children aged 5-18 years and parent proxy report includes ages 2-18 years. The core module assessed 23 items in 4 areas while diabetes module has 5 areas assessed with 28 items.
Results showed low missing data for both questionnaires and coefficient for most of the scales in PedsQL exceeding >0.70 ( both children and parent proxy). ANOVA analysis showed lower HRQoL for all sub-scales except physical and social functioning in both Type 1 and Type 2 diabetic patients when compared with healthy controls. The correlation between PedsQL and DiabQL showed medium to large effect and there was a small to medium effect in Type 1 diabetics reported by children and parent proxy but none in Type 2 diabetics.
Strengths and limitations:
This study had clear hypotheses and methodology. There is only minimal missing responses indicating that the data provided is of good quality. The numbers were large with appropriate statistical calculations. However, selection process was not clear and it has potential limitations since the information about the non-participants are not given which limits its generalizability. Moreover, the healthy sample were from younger age group and type 2 diabetic children were obese from different socio economic back ground resulting in selection bias. Although there were some advantages for telephonic discussions, it was not retested to establish its usefulness. This trial also lacks test re-test reliability which is important in qualitative studies.
Synthesis of the evidences
The above evidences clearly show that there is a dearth in validated diabetic questionnaires for use specifically in paediatrics. The PedsQL assesses mainly the generic core scales whereas the DiabQL assess various domains pertaining to Diabetes. There for in order to apply them for clinical use both need to be combined. Since MY-Q integrates both generic and diabetic scales it is found to be superior to PedsQL for use in youth with diabetes. Moreover it’s higher sensitivity in identifying depression and eating behavior as well as it’s brevity and actionable outcomes it comes higher in the list. Paradoxically when a web based version of it is trialed , only 2/10 units were able to integrate into their clinical practice.(Eilander et al., 2016). Inadequate logistic support in terms of lack of support for data processing, time pressure in the clinic and need for motivation were the important obstacles for their successful implementation.
Regarding the web based questionnaire , a randomized cross over trial comparing PedsQL (based on paper and pen format) and web based format was performed which had equal uptake for both of them.(Varni et al., 2008). This study failed to demonstrate the superiority of modern web based programs to the standard one. But this study did not assess the diabetes related quality of life, which crucial in the management of youth with diabetes. This study also has flaws in terms of disparity for access to internet , confidence in using web based questionnaires, educational status of the parents and socio-economic status of the participants all put together would have likely affected the results(Varni et al., 2003). Over all these studies were carried out between 2008-2012, when the smart phone technology and internet accessibility was not that widely available which might have influenced the outcome.
Pre-clinical health questionnaires supporting communication with in the consultation
Even though achieving tight glycaemic control and better quality of life are the prime aim of any diabetes control program it is a challenge not only for the youth but also for the family and the diabetes care professionals.(de Wit & Snoek, 2009). Regular evaluation of HRQoL and discussion with the adolescent and the primary care giver is important in identifying and addressing the potential barriers in order to improve quality of life.(Delamater, 2007). ISPAD consensus guideline advocate early identification of psychological problems and providing appropriate support which should be integral part of diabetic acre.(Delamater et al., 2014).It is widely accepted that HRQoL assessment should be a part of annual review of patients in diabetic clinics. However, there is no consensus on how this could be made practical. A multicenter RCT in adolescents with diabetes showed that regular assessment of HRQoL and open discussion with them and their primary care giver or the family member who is directly supervising the care of the individual showed improved commitment of families and decreased psychosocial problems except those with high HbA1c (>9.5%)(de Wit et al., 2008). A step further the adolescents felt that discussions on QoL in clinics helped improving care and support from the diabetic team and the time spent effectively in clinics. However , improved youth engagement failed to show an improvement in glycaemic control in terms of HbA1c which is still used as a surrogate marker of glycaemic control.(de Wit et al., 2008). Even though health care professionals are in agreement to assess their patients HRQoL using validated tools , it is not implemented in real life (Peyrot & Group, 2009) Lack of proper training in using these tools and inadequate communication skills to make a positive impact on the youth are blamed for this(Hawthorne et al., 2011). Computers and internet facilities have been tried in order to implement preclinical questionnaires for facilitating communication in consultation.
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