Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study

Jiang, Ivy; Major, Gabor; Singh‐Grewal, Davinder; Teng, Claris; Kelly, Ayano; Niddrie, Fiona; Chaitow, Jeffrey; O’Neill, Sean; Hassett, Geraldine; Damodaran, Arvin; Bernays, Sarah; Manera, Karine; Tong, Allison; Tunnicliffe, David J.

doi:10.1136/bmjopen-2020-039670

Cited by 17 publications

(12 citation statements)

References 58 publications

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“…Almost all studies used a semi-structured interview [ 38 – 40 ], but a few studies conducted an unstructured interview [ 41 ]. Furthermore, the majority of interviews were held face-to-face in the clinical setting [ 37 – 39 ] or at the patients’ home [ 40 ], and a few interviews were conducted by telephone [ 39 ].…”

Section: Resultsmentioning

confidence: 99%

Pediatric patient engagement in clinical care, research and intervention development: a scoping review

Teela

Verhagen

Oers

et al. 2023

J Patient Rep Outcomes

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Background In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement. Methods The methodological framework of Arksey & O’Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated. Results A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age. Discussion This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects.

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Section: Resultsmentioning

confidence: 99%

Pediatric patient engagement in clinical care, research and intervention development: a scoping review

Teela

Verhagen

Oers

et al. 2023

J Patient Rep Outcomes

View full text Add to dashboard Cite

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“…Tele-rheumatology is a resource that can be valuable for this population as it can be used when patients are away for university/college for follow-up appointments and make it easier to have joint appointments with health care providers. A transition navigator or coach may be a valuable resource to bridge the divide between pediatric and adult care, provide psychosocial support to young adult patients, and provide continuity to patients during this challenging time [ 20 , 21 ]. Transition navigators have been found to improve adherence to medication, attendance at clinic, and reduce acute complications of disease in other chronic disease populations [ 22 ].…”

Section: Discussionmentioning

confidence: 99%

A survey of Canadian adult rheumatologists’ knowledge, comfort level, and barriers in assessing psychosocial needs of young adults with rheumatic diseases

et al. 2023

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To assess adult rheumatologists’ comfort level, current practices, and barriers to provision of optimal care in supporting young adults with pediatric-onset rheumatic conditions in Canada. Survey questions were informed by literature review, a needs assessment, and using milestones listed by the Royal College of Physicians and Surgeons of Canada for the entrustable professional activities (EPAs) applicable to care for rheumatology patients transitioning to adult practice. The electronic survey was distributed to adult rheumatology members of the Canadian Rheumatology Association over 4 months. Four hundred and fifty-one rheumatologists received the survey, with a response rate of 15.2%. Most respondents were from Ontario and had been in practice ≥ 10 years. Three quarters reported a lack of training in transition care although the same proportion were interested in learning more about the same. Approximately 40% felt comfortable discussing psychosocial concerns such as gender identity, sexuality, contraception, drug and alcohol use, vaping, and mental health. Despite this, 45–50% reported not discussing vaping or gender identity at all. The most frequently reported barriers to providing transition care were lack of primary care providers, allied health support, and training in caring for this age group. Most adult rheumatologists lack formal training in transition care and view it as a barrier to providing care for this unique patient population. Future educational initiatives for adult rheumatology trainees should include issues pertaining to adolescents and young adults. More research is needed to assess the effectiveness of resources such as transition navigators in ensuring a successful transition process. Supplementary Information The online version contains supplementary material available at 10.1007/s00296-023-05337-y.

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“…Themes and sub-themes identified had support as well in previous qualitative studies as synthesized in a 2020 systematic review which included 16 studies. Preparedness for transition [ 17 , 33 ], readiness for transfer of care [ 17 ], developing self-advocacy skills [ 17 ], continuity and breadth of care [ 17 , 33 ], changing relationships [ 17 ], culture shock [ 17 ], new responsibilities [ 17 ], need for support [ 17 ], social support [ 17 , 34 ], while additional emphases were identified by this study on mental health support and ongoing support needs – beyond the transfer of care. The Kelly et al systematic review [ 17 ] identified support for the whole person (theme of deprived of human focus) which encompasses psychological support, but did not explicitly identify mental health support [ 17 ].…”

Section: Discussionmentioning

confidence: 99%

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

et al. 2022

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Background Juvenile idiopathic arthritis (JIA) is a childhood autoimmune disease that causes swelling and pain in at least one joint. Young people with JIA experience symptoms that persist into adulthood, and thus will undergo a transition including the o transfer of care from a pediatric rheumatologist an adult rheumatologist. Missing from the literature is research that centres the transition experience of young people with JIA in Canada. This goal of this patient-led research was to explore the experience young people with JIA through the process of transition. Methods Qualitative study using the Patient and Community Engaged Research (PaCER) approach. Trained patient-researchers conducted three focus groups using the Set, Collect and Reflect PaCER process. Participants, recruited via purposive and snowball sampling using research/personal networks and social media, were young people with JIA in Canada between 18 and 28 years who had experienced with the process of transition to adult care. Recordings were transcribed verbatim. Patient researchers individually coded overlapping sections of the data, and thematic analysis was conducted. Results In total, nine individuals participated in one or more focus groups. Three themes were identified, with sub-themes: preparedness for transition (readiness for the transfer of care, developing self-advocacy skills), continuity and breadth of care (changing relationships, culture shock, new responsibilities), need for support (social support, mental health support, and ongoing support needs – beyond the transfer of care. Peer support was a connecting concept in the support sub-themes. Transition was more than a change in primary physician but also a change in the care model and breadth of care provided, which was challenging for young people especially if they had insufficient information. Conclusions Transition from pediatric to adult care in rheumatology is a significant period for young people living with JIA, and this patient-led study provided insight into the experience from the perspective of young people with JIA which is critical to informing the development of supports for patients through the process. Patients, caregivers, pediatric and adult rheumatologists and members of the multi-disciplinary care team need to collaborate in terms of resources preparing for transfer, and support throughout the transition process to ensure a successful transition process.

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Patient and parent perspectives on transition from paediatric to adult healthcare in rheumatic diseases: an interview study

Cited by 17 publications

References 58 publications

Pediatric patient engagement in clinical care, research and intervention development: a scoping review

Pediatric patient engagement in clinical care, research and intervention development: a scoping review

A survey of Canadian adult rheumatologists’ knowledge, comfort level, and barriers in assessing psychosocial needs of young adults with rheumatic diseases

Transitions from pediatric to adult rheumatology care for juvenile idiopathic arthritis: a patient led qualitative study

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