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SYSTEMATIC REVIEW PROTOCOLS

Self-management for youth and young adults with special health needs: protocol for a scoping review of health care transition planning literature

Betz, Cecily L.1; Mannino, Jennifer E.2; Cleverley, Kristin3; Young, Cara C.4; Ridosh, Monique5; Kysh, Lynn6; Hudson, Sharon M.1

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doi: 10.11124/JBIES-20-00265
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Abstract

Introduction

The survival rates of children diagnosed with long-term chronic conditions have improved substantially over the past few decades, with 90% of this population now anticipated to enter adulthood.1-4 This burgeoning increase of youth and young adults (YYA) with childhood-acquired conditions exiting the pediatric health care system and entering the adult health care systems have created pervasive and unrelenting pressures on these systems, generating the need for linkage improvements between them.1 Health care transition (HCT) has emerged as a service model within the pediatric system to address the incongruities associated with this interval period of care that result in untoward clinical outcomes for this patient population.5-7 These adverse outcomes include deterioration of their clinical condition and serious life-threatening complications, solid transplant rejections, and emergence of secondary conditions.8-12 Concerted efforts to address this consequential service readjustment have been underway, not only nationally, but globally as well. These efforts have been initiated by government entities, professional health care associations (spearheaded initially by pediatric medicine with other professional groups joining the effort), and influential leaders in health care.13-15

In response, HCT has become an expanding field of practice and research, delving into the complexities associated not only with the event planning to do with the transfer of care but also with the encompassing process of the transition itself during this vulnerable developmental period. The full scope of health care transition involves the integration of practice concerns associated with the competent management of a long-term chronic condition coupled with the developmental challenges of moving through adolescence, emerging and young adulthood, and ultimately into adulthood.5,6,16,17

Theoretical models of HCT that have been developed to guide the direction of research provide representations that are broad in their perspectives and comprehensive in scope. Health care transition research is not limited to investigating the challenges and obstacles to seamlessly transfer and establish care with a new team of providers with clinical expertise to treat YYA with childhood-acquired conditions.18,19 Other facets of care are integral to effective optimal HCT outcomes, as the lived experience of having a long-term chronic condition involves management and attention in all aspects of daily life.

For YYA, the lived experience of having a long-term chronic condition affects all aspects of daily living, whether at home, school, work, in the community, or socializing with friends, colleagues, peers, and community members. Participation to the fullest extent possible for YYA is highly dependent on their ability to be competent with self-management of their long-term chronic condition. This self-management process is a learned experience beginning in childhood and proceeds forward with increasing competence in attaining the knowledge and skills to manage the daily demands of living with a long-term condition. Long-term chronic condition self-management involves a diverse set of competencies: those associated with the treatment management tasks and those associated with the daily living activities to function independently to the fullest extent possible.20-26

Self-management is conceptually linked to transition readiness and the outcome of successful transition but is understudied; therefore, this scoping review will identify the literature that includes self-management across all conditions within the transition literature specifically. Addressing the self-management learning needs and monitoring their acquisition as a component of HCT planning is essential; yet, self-management as an integral component of HCT has been rarely addressed in the literature. Although there has been an increasing proliferation of HCT literature published as evidenced by a number of scoping, systematic, and integrative reviews, and the dedication of special issues on the topic, few studies have explored self-management as an area of interest in the HCT literature. This scoping review will identify the degree to which the body of literature that contains this component of care (self-management) is present across all publications, including gray literature. It will identify which conditions have been investigated, sample characteristics, and how self-management is operationalized. A preliminary search of the PROSPERO website and the JBI Database of Systematic Reviews and Implementation Reports were reviewed and no comparable scoping or systematic reviews were found.

Review question

To what extent is self-management investigated and reported in health care transition literature concerning adolescents and young adults with long-term conditions, special health care needs, medically complex conditions, developmental disabilities, and/or chronic illnesses?

Inclusion criteria

Participants

Participants included in this scoping review will include a broad range of adolescents consisting of early adolescents, beginning at the emergence of puberty around age nine and extending through young adulthood up to age 35.27-31 The transfer of responsibility for self-management from parent to child is an important indicator of successful health outcomes, such as transfer success. This process unfolds over time with varying degrees of child, parent, or shared responsibility.32 Two growth trajectories of child responsibility for care were identified in evaluating self-management in youth with spina bifida as early as eight to nine years of age.33 Taking on advanced self-management skills, such as managing appointments and purchasing medications or supplies, may not occur until youth gain independence as young adults. Those with pediatric chronic conditions (up to 30 years of age) have lower rates of mastering adult milestones; thus, extending our research to 35 captures youth and young adults’ full range of self-management, independence, and transition experiences.34 Young adulthood has been referred to as extending to the mid-thirties by theorists and researchers investigating young adults with special health care needs. This population is described in the literature using an array of terms, such as “long-term chronic condition,” “special health care needs,” “medical complex condition,” “complex care needs,” “developmental disability,” “intellectual disability,” “mental health condition,” “emotional disabilities,” “physical disabilities,” “chronic illness,” and “chronic condition.” Our inclusion criteria will include chronic health conditions that emerged in childhood, such as the following conditions: autism spectrum disorder, cystic fibrosis, juvenile rheumatoid arthritis, lupus, polycystic ovary syndrome, diabetes mellitus, sickle cell disease, attention deficit hyperactivity disorder, and bipolar disorder.

Concept

This scoping review will investigate the scope of literature that has been published to date on the topic of self-management and its integration as a focus of study in the health care transition literature. Self-management, for the purposes of this review, is described as the acquisition of knowledge and skills competencies to independently manage (to the extent possible) the daily tasks and long-term requirements of living with a chronic condition. The learning process of self-management is not limited to the core knowledge and skills associated with chronic condition management. As evident during the course of health care transition planning, self-management also embodies lifestyle self-management. That is learning to adapt, adopt, and modify the self-management condition–related knowledge and skills to a vast array of community-based and social situations, such as attending college, living independently or in a congregate setting, and engaging in civic community activities.20-25 This review will explore the extent to which self-management has been investigated as a component of health care transition planning based upon this broadly defined concept.

Context

This scoping review will include all geographic areas and will be international in scope. There will be no restrictions as to the setting wherein health care transition is described, whether in health care or community-based settings. The rationale for conducting a scoping review followed by a systematic review is based upon the gap in the literature pertaining to the science and evidence on health care transition and self-management. As the first phase of the work, the scoping review will provide an overview/mapping of the literature that has been generated in health care transition and examination of self-management. We are interested in investigating the extent to which self-management has been explored as a component of health care transition planning and an outcome of care. The scoping review will be followed by a systematic review that will report the findings of what has been investigated and analysis of the research conducted to date.

Types of studies

The scoping review will include all types of investigations that include qualitative and quantitative designs that have been published since the early 1980s, as this is when the first publications on health care transition emerged. All articles published in English will be included in the review. This review will not be limited to research publications, and will include other forms of publications such as clinical commentaries, editorials, and opinion perspectives. Gray literature, for example, conference abstracts and governmental and professional reports and websites, will be reviewed and will provide another source of examination.

Methods

This scoping review will follow the scoping review guidelines as presented in the JBI Manual for Evidence Synthesis.35

Search strategy

A clinical and research librarian assisted in creating search strategies for health care transition in pediatrics in collaboration with the team, following a three-step process. An initial strategy was created in both Ovid MEDLINE and Embase using a combination of keywords and controlled vocabulary terminology. Results of these searches were then analyzed in order to determine additional search terms from the title, abstract, author keywords, and database indexing. See Appendix I for the full Ovid MEDLINE search strategy. The third step of examining the reference lists of included studies will be conducted following the screening process.

For this scoping review, the following databases will be accessed: MEDLINE (OvidSp), Embase (Elsevier), Cochrane CENTRAL (Wiley), CINAHL (EBSCO), PsycINFO (EBSCO), and Web of Science (Clarivate Analytics). Sources of gray literature will be accessed including the following websites: ClinicalTrials.gov, World Health Organization (WHO) International Clinical Trials Registry Platform (ICTRP), and National Institute for Health Research (UK). Government websites of the National Institutes of Health (NIH) will be searched for extramural funded grants on relevant self-management and health care transition topics. Conference abstracts of major general and specialty pediatric medicine, nursing, medical/pediatric meetings (Pediatric Academic Societies, Society of Pediatric Nurses), and those of the interdisciplinary professional groups involved with health care transition planning (International and Interdisciplinary Health Care Transition Research Consortium) and dissertations will be reviewed. Authors will be contacted, where possible, when additional or missing information is required. The Grey Matters search tool, developed by the Canadian Agency for Drugs and Technologies in Health, will be used to search for Canadian and international health-related gray literature.36

Study selection

Citations will be exported from each of the aforementioned databases using EndNote v.X9 (Clarivate Analytics, PA, USA). Based upon published guidelines, duplicates will be identified and removed within EndNote.37 The remaining citations will be imported into Covidence (Veritas Health Innovation, Melbourne, Australia), the online systematic review management platform. In Phase 1 of the review, all members of the review team will review the abstract citations for eligibility. This will be accomplished by team member pairs who will independently review abstracts for eligibility. Disagreements will be resolved with a third team member. In Phase 2, following completion of abstract citations, eligible full text references will be uploaded into Covidence for review. The same process used for Phase 1 will be used for Phase 2. Upon Phase 2 completion, Phase 3 will be undertaken by selected team members to search the gray literature. The findings of each phase of the search will be presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) flow diagram.38

Data extraction

The data extraction tool in Appendix II will serve as the template for the development of the REDCap database (hosted on the University of Southern California Clinical and Translational Science Institute [USC-CTSI] website). In Phase 2, data will be extracted from full-text articles and entered into the REDCap database. All members of the team will have access to this website for data inputting purposes. Double entry of data into the REDCap database will be done independently by members of the team for reliability purposes. In the event of a conflict, it will be mediated by the third team member. The data extraction form as presented in Appendix II consists of 30 items relating to the following domains: provenance (11 items), sample characteristics (10 items), research characteristics (seven items), and self-management (two items).

Data analysis and presentation

Initially team members will review summary data generated in terms of frequencies and percentages. Based upon this initial data, the team members will determine the patterns evident within the initial presentation. Additional analysis will be predicated on responding to the original research question of this scoping review to explore the extent to which self-management is investigated and reported in the health care transition literature. It is anticipated that the analysis of this will enable mapping of this self-management competency and its role to identify areas of strengths, limitations, and needs for improvement as well as the implications for research and clinical practice.

Appendix I: Search strategy

MEDLINE (Ovid)

Ovid Search yielded 4230 citations on October 20, 2020

Database coverage: 1946–present

Date searched: October 20, 2020

(“Continuity of Patient Care”/ OR exp Transition to Adult Care/ OR ((care OR healthcare) ADJ5 (transition OR transitions OR transitional OR transfer OR transfers OR transferring).af OR hand-off.af OR hand-offs.af OR handoff.af OR handoffs.af OR hand-over.af OR hand-overs.af OR handover.af OR handovers.af))

AND

(exp Self-Management/ OR exp “Activities of Daily Living”/ OR exp Patient Participation/ OR exp Personal Autonomy/ OR exp Health Literacy/ OR exp “Treatment Adherence and Compliance”/ OR exp Self Care/ OR exp Self Concept/ OR self medication/ OR self administration/ OR exp Self-Examination/ OR exp Empowerment/ OR exp Patient Participation/ OR (self.af ADJ3 (actual OR admin OR advoca OR confiden OR congruen OR determin OR efficacy OR evaluat OR know OR monitor OR referen OR regard).af) OR self-assess.af OR self-care.af OR self-concept.af OR self-manag.af OR self-medicat.af OR self-percept.af OR self-sufficien.af OR (daily.af ADJ5 (life OR living OR activity OR activities).af) OR activation.af OR adherence.af OR autonomy.af OR compliance.af OR empower.af OR engagement.af OR “health literacy”.af OR indepen.af OR involvement.af OR responsibility.af)

AND

(exp Child/ OR exp Adolescent/ OR exp Minors/ OR exp Young Adult/ OR exp Pediatrics/ OR exp Pediatricians/ OR exp Hospitals, Pediatric/ OR child.af OR kid.af OR kids.af OR juvenile.af OR juveniles.af OR minors.af OR youth.af OR youths.af OR young.af OR youngster.af OR youngsters.af OR elementary-school.af OR grade-school.af OR preadolescen.af OR pre-adolescen.af OR preteen.af OR middle-school.af OR adolescen.af OR teen.af OR high-school.af pediatric.af OR paediatric.af)

Appendix II: Data extraction tool

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Keywords:

health care transition; self-management; transition age youth and young adults

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