Development of a sickle cell disease readiness for transition assessment

Treadwell, Marsha; Johnson, Shirley; Sisler, India; Bitsko, Matthew; Gildengorin, Ginny; Medina, Rogelio; Barreda, Fernando; Major, Kimberly; Telfair, Joseph; Smith, Wally R.

doi:10.1515/ijamh-2015-0010

Cited by 25 publications

(21 citation statements)

References 23 publications

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“…At the KATH SCC, adolescents and their accompanying adult family members were asked about a range of topics that have previously been identified as important for successful transition to adult SCD care in the U.S and U.K [ 13 , 23 ] . To our knowledge, this is the first patient survey about SCD transition in Ghana or elsewhere in Africa.…”

Section: Discussionmentioning

confidence: 99%

“…Interview questions had been adapted from two surveys that previously had been used to assess transition readiness and transition related concerns of adolescents in the U.S.: Sickle Cell Transfer Questionnaire (SCTQ) [ 13 ] and Transition Intervention Program Readiness for Transition (TIP-RFT) [ 23 ] . Those studies had identified four major domains that were relevant to SCD transition from pediatric to adult care cited above.…”

Section: Methodsmentioning

confidence: 99%

“…Using a structured interview at a single SCD clinic in Ghana, the aim of this study was to assess the knowledge and perspectives of older pediatric patients with SCD and their caretakers prior to transition, focusing on the four domains that have been relevant for assessing transition readiness in the U.S and U.K.: SCD medical knowledge, independent management of SCD symptoms, psychosocial impact of SCD and transition preparation [ 13 , 23 ] . KATH SCC patients ages 12–15 years and adult caretakers accompanying these children were interviewed to compare their perceptions about the child’s perspectives on these topics.…”

Section: Introductionmentioning

confidence: 99%

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Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Kwarteng-Siaw

Paintsil

Toboh

et al. 2017

International Journal of Hematology Research

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AIMSickle Cell Disease (SCD) is associated with high child mortality and birth incidence in sub-Saharan Africa. Improved SCD medical services in Ghana aims to enhance survival into adulthood, creating emerging need for transition from pediatric to adult care. Anticipating transition for adolescents with SCD, we sought to understand patient and caretaker perspectives on transition to adult care within Ghana.MATERIALS AND METHODSStructured interviews were conducted with a sample of patients ages 12–15 years and accompanying adults at Ghana’s Komfo Anokye Teaching Hospital Sickle Cell Clinic (KATH SCC) covering four areas: SCD medical knowledge, symptom self-management, psychosocial impact, and transition preparation.RESULTSIn total, 46 children (mean age 13 years) paired with 46 adults were interviewed. Most children and caretakers had some knowledge about SCD and disease management. At least one-third lacked knowledge about SCD as an inherited condition. Youth were significantly more concerned about family burden and social stigmatization than adults. Most were unaware that patients are expected to switch care to adult medical providers by age 15 years, but were willing to transfer if needed.CONCLUSIONSOur clinic-based assessment at KATH SCC identified needs of adolescents and caretakers for education and counseling about disease, self-management, transition, family burden, and stigmatization. These findings provide insights into perspectives and educational gaps of families treated for SCD. Results suggest consideration of transition planning for adolescents with SCD and their caretakers in Ghana. Generalizability of our findings and practical methods to address needs for transition within Africa remain to be tested.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Kwarteng-Siaw

Paintsil

Toboh

et al. 2017

International Journal of Hematology Research

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“…Only four of the 19 tools used in the included articles were developed prior to 2014 [11,32,37,43]. Of the 15 [11,26,32,37,43,47,49,51,53,[55][56][57], and among the 48 included, articles have been utilized in Argentina [21], Brazil [19], Canada [3,15,16,23], Mexico [33], and Turkey [22]. Three tools originated in Canada [39,41,45] and have been utilized in Japan [46] and Turkey [42].…”

Section: Characteristics Of Measuresmentioning

confidence: 99%

Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review

Parfeniuk

Petrovic

MacIsaac

et al. 2020

Journal of Transition Medicine

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BackgroundTransition from pediatric to adult healthcare for adolescents with chronic health conditions has emerged as a critical period influencing health outcomes. Suitable transition readiness measures are necessary to facilitate effective planning. Currently, there is little consensus about well-validated transition readiness measures. The purpose of this systematic review was to identify best practices in transition readiness measurement for adolescents and young adults with chronic health conditions.Data sourcesAcademic databases searched included PubMed, Cumulative Index to Nursing and Allied Health Literature, Google Scholar and Athabasca University Library’s Discover.Study selectionArticles were included that discussed the development and psychometric properties of transition readiness measures for adolescents and young adults (11–25 years) with chronic health conditions and/or that utilized a previously developed measure.Data extractionThe primary and secondary reviewers extracted data from the selected articles as per the data extraction tool developed for this review.ResultsForty-eight articles, representing 19 tools, were included in the review. Ten of the tools were disease-specific; nine were disease-neutral. According to the Cohen criteria, eight measures were “well-established assessments”. The Transition Readiness Assessment Questionnaire was deemed the best measure of transition readiness available. The literature search included only articles published in peer-reviewed journals; measures nearing completion or awaiting publication were not included. In addition, only English manuscripts were included, many from North America.ConclusionsDespite national practice guidelines and ongoing policy development, there is slow movement towards achieving a gold standard or best-practice measure of transition readiness.

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“…Camp can be excellent preparation for the transition to the adult medical care system, widely recognized as an important goal for SCD education. [22][23][24] Informal teaching methods such as role-playing skits, games, 25,26 music, 27,28 or movies (eg, The Family Legacy produced by UK Sickle Cell Society 29 and Spilled Milk -A Documentary by Jaqai Mickelsen and Omar Beach 30 ) fit well into the spirit of summer camp.…”

Section: Education In Self-carementioning

confidence: 99%

Summer Camps for Children with Sickle Cell Disease

Narcisse

Walton²,

Hsu

2018

TOJ

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Background: Children with sickle cell disease (SCD) face unique problems that attendance at a camp with their peers is well suited to address. However, because the staff members at ordinary summer camps are not accustomed to accommodating children with chronic diseases, the potential for significant health consequences exists. Methods: We searched the literature in PubMed and CINAHL using the keywords summer camp, camp, sickle, and anemia to identify the unique characteristics of camps for children with SCD and the recommendations for care and/or lessons learned. Results: Published data are limited. Accommodations to avoid triggering sickle vaso-occlusive pain have been developed empirically and extrapolated from other settings. Camp experiences provide peer learning opportunities, positive role models, and a safe area to explore personal growth. The supportive atmosphere of the camp and escape from social stigma are welcome changes from the daily routine. Camp experiences can help with education on self-care and the transition from adolescent to adult healthcare. Conclusion: Camp offers unique opportunities for care coordination. Camps for children with SCD provide a setting for dissemination of best practices for the disease. Community-based organizations should partner in recruiting young adults with SCD as counselors. Educational material now available could be modified for use in the camp setting. All stakeholders in the care of children with SCD should work in unison to ensure these children enjoy the benefits of summer camp.

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Development of a sickle cell disease readiness for transition assessment

Cited by 25 publications

References 23 publications

Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Assessment of Transition Readiness in Adolescents with Sickle Cell Disease and their Caretakers, A single institution experience

Transition readiness measures for adolescents and young adults with chronic health conditions: a systematic review

Summer Camps for Children with Sickle Cell Disease

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