Development and validation of a generic scale for use in transition programmes to measure self‐management skills in adolescents with chronic health conditions: the TRANSITION‐Q

Abstract

Aim To develop a generic self-management skills scale for use with adolescents diagnosed with a chronic health condition who are aged 12 to 18 years. Background There is a lack of methodologically sound scales for healthcare teams to use to measure self-management skills in adolescents with chronic conditions transitioning to adult care. Methods Adolescents aged 12 to 18 years with a broad range of chronic health conditions, including neurodevelopmental conditions, were recruited from May to August 2013 from nine outpatient clinics at McMaster Children's Hospital (Canada). Thirty-two participated in a cognitive interview, and 337 completed a questionnaire booklet. Interviews were used to develop the TRANSITION-Q. Rasch measurement theory (RMT) analysis was used to identify items that represent the best indicators of self-management skills. Traditional psychometric tests of measurement performance were also conducted. Results The response rate was 92% (32/32 cognitive; 337/371 field test). RMT analysis resulted in a 14-item scale with three response options. The overall fit of the observed data to that expected by the Rasch model was non-significant, providing support that this new scale measured a unidimensional construct. Other tests supported the scale as scientifically sound, e.g. Person Separation Index = 0.82; good item fit statistics; no differential item function by age or gender; low residual correlations between items; Cronbach's alpha = 0.85; test-retest reliability = 0.90; and tests of construct validity that showed, as hypothesized, fewer skills in younger participants and in participants who required assistance to complete the scale. Finally, participants who agreed they are ready to transfer to adult healthcare reported higher TRANSITION-Q scores than did participants who disagreed. Conclusions The TRANSITION-Q is a short, clinically meaningful and psychometrically sound scale.This generic scale can be used in research and in paediatric and adolescent clinics to help evaluate readiness for transition.

Supported self-care for children and adolescents with chronic disease and their families

“…of the child/adolescent and/or the family, which may influence self-care actions (13,17,23,30,(32)(33) To evaluate the process of health care transition (HCT) from pediatric to adult-centered health care delivery systems (16,18,21,(34)(35) Counseling Inform the child/adolescent and/or family about the symptoms of the disease and/or therapeutic measures (17,27,36) , while recognizing the cultural uniqueness (19) Inform the child/adolescent and/or family that behavioral changes are as important as taking medications (20) To report the evidence on behavioral changes in health (17) Sharing evidence-based clinical guidelines to encourage the child/adolescent and/or family to participate in treatment (17,35) Provide educational material on self-management (16,20,27,(36)(37) Include motivational strategies (15) …”

“…Several studies have investigated this activity (13)(14)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35) . One of the aspects discussed in the research was to determine whether activities for self-care management are adhered to along with therapies and skills already developed by health professionals (17,(24)(25)(26)(27)(28)(29) .…”

“…The instrument asks the individual if he is able to answer questions by a doctor or nurse, if he helps in making decisions about his health, is responsible for managing the taking of his medication, if he speaks to or enters in contact with a physician or nurse when health problems arise, if he himself can communicate, instead of his parents, and if he is able to summarize his medical history when requested, in addition to other considerations (34) . This assessment enables both the health professionals and patient to obtain an overview of how ready the latter is to be transferred to an adult-centered care service.…”

“…Transitional clinics are resources that have been used in the United States for the follow-up of adolescents with chronic disease until they attend adult care services (16,(34)(35) . With regard to this situation, general interventions, which are not specific to any chronic disease (16,34) , can reduce costs for health services and also favor the efficiency of this transfer process, considering that in this age group the problems experienced are common to several individuals, regardless of the chronic illness they are facing.…”

Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

“…CHD knowledge and motivation were also assessed by asking them complete a paper version of a draft knowledge questionnaire that we developed as a part of the quality improvement initiative. Adolescents completed a paper version of the Transition Q survey [38] to assess transition readiness.…”