A Delphi Study on the Healthcare Needs of Patients with Type 1 Diabetes during the Transition from Adolescence to Adulthood: Consensus among Patients, Primary Caregivers, and Healthcare Providers.
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SUBMITTER: Chiang Y
PROVIDER: S-EPMC8296953 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundRecently, there has been growing interest in providing more tailored, patient-centered care for the treatment of type 2 diabetes mellitus (T2DM). Yet it remains unclear which patient characteristics should be determined to guide such an approach. Therefore, the opinions of healthcare providers (HCP) and people with T2DM about relevant patient characteristics for estimating healthcare needs of people with T2DM were assessed and compared.MethodsTwo separate online Delphi studies were conducted according to the RAND-UCLA Appropriateness Method: one with HCPs (n?=?22) from Dutch primary and secondary care and one with people with T2DM treated in Dutch primary care (n?=?46). The relevance of patient characteristics for estimating healthcare needs, defined as the number of yearly consultations, was assessed on a 5-point Likert scale. Characteristics with a median of 4 or 5 and an interquartile range???1.5 were considered relevant with consensus. Participants were also asked to select the top 5 of most relevant patient characteristics. To determine the overall top 5, the mean relative importance score of each characteristic was calculated.ResultsIn two Delphi rounds, 28 and 15 patient characteristics were rated by HCPs and people with T2DM, respectively. Both HCPs and people with T2DM found health-related characteristics relevant for estimating healthcare needs of people with T2DM. However, HCPs preferred to estimate healthcare needs using person- and context-related characteristics. They ranked self-efficacy as the most relevant estimator. In contrast, people with T2DM were more in favor of health-related characteristics and ranked HbA1c as the most relevant estimator.ConclusionsThe findings show that there is discrepancy in opinions on relevant patient characteristics for estimating healthcare needs between HCPs and people with T2DM. To achieve more tailored, patient-centered care, it is important that both groups agree on the topics to be discussed during patient consultations.
| S-EPMC6698036 | biostudies-literature
Project description:Idiopathic pulmonary fibrosis (IPF) is a progressive disease associated with poor quality of life. Debilitating symptoms and the reality of shortened survival impact patients' physical and emotional well-being and constrain the lives of patients' caregivers. This study assessed the informational needs of medical providers who care for patients with IPF, IPF patients themselves, and their caregivers. Tailored surveys were sent electronically to providers, patients with IPF, and caregivers of patients with IPF collected on a rolling basis in March of 2017. Providers answered questions regarding their own informational needs and what information they believed patients needed. Patients and caregivers identified their own informational needs and the perceived needs for each other. About 2636 surveys were sent to providers, including 2041 to physicians, of whom 156 completed it. One hundred sixty patients and 29 caregivers responded to the survey via a link on a website. Eighty-six percent of providers described themselves as physicians who diagnose and treat IPF patients themselves. Providers ranked information on "making the diagnosis of IPF" as their top informational need. Patients and caregivers chose "disease progression/what to expect" as the most important informational need for themselves and for each other. Providers want to make a correct diagnosis when IPF is in the differential diagnosis. Patients and caregivers desire clarity around how IPF will behave over time and what their futures with IPF will look like. Resources for patients and their caregivers should include information on disease natural history in empathically worded, clear, and easily accessible formats.
| S-EPMC6616062 | biostudies-literature
Project description:Adolescents with Human Immunodeficiency Virus (HIV) are at greater risk for mental health problems than their HIV-negative counterparts. However, there is a dearth of evidence on the need for mental health services, including interventions for depression in adolescents with HIV (AWHIV), in most low- and middle-income countries (LMICs). This study's objective was to explore the unmet mental health needs of AWHIV to inform the development and implementation of a psychological intervention for depression in AWHIV in Dar es Salaam, Tanzania. A descriptive phenomenological qualitative study design was used. Consultative meetings with providers and 45 in-depth interviews were conducted with AWHIV, caregivers, and healthcare providers (HCPs) to explore their experiences and unmet mental health needs for AWHIV. Data from the consultative meetings were triangulated to validate the obtained information with those from interviews. Data were organized and managed with the aid of NVIvo-11. The thematic analysis framework guided data analysis. Five major themes emerged: Experience of complex symptoms, unmet need for services, impact of the unmet needs, ways utilized in managing symptoms, and preferred intervention. Complex depressive symptoms expressed as physical, behavioral, or somatic complaints adversely affected ART adherence and academic performance, led to substance use, and compromised overall quality of life in AWHIV. HIV-Care and Treatment Centers (HIV-CTCs) did not conduct formal mental health screenings. Instead, caregivers and HCPs addressed the symptoms of mental health problems with death threats and corporal punishments. No evidence-based depression interventions existed in HIV-CTCs for observed symptoms. This study reports on unmet mental health needs with a clear impact on the lives of AWHIV, which may have significant implications for treatment adherence. There is an urgent need to develop and implement effective and scalable interventions to address these mental health needs.
| S-EPMC11356450 | biostudies-literature
Project description:It is necessary to understand the learning needs of heart failure (HF) patients to provide adequate patient education. It is necessary to identify what HF patients want to know and how this differs from the educational needs of healthcare providers. The aim of this descriptive and exploratory study was to evaluate and compare the learning needs priorities between HF patients and their healthcare providers. One hundred patients with HF and 20 healthcare providers were recruited from cardiovascular outpatient clinics at 2 large tertiary medical centers in South Korea. Learning needs were measured using a self-administered questionnaire with the Heart Failure Patients' Learning Needs Inventory. Data were analyzed using SPSS 23.0 program. Overall rank orders for 48 items were similar in both groups (Spearman rank order correlation 0.605, p < .001). The educational topics of medications and worsening signs and symptoms ranked highest in both groups. However, healthcare providers were more concerned with diet management than were the patients (mean score 4.18 vs. 3.62; p = .001). The study showed both similarities and differences between the assessments of the patients and healthcare providers of detailed educational learning needs. It is important to develop patient-centered educational materials considering HF patients' actual learning needs, and also to provide comprehensive and practical patient education based on a supportive understanding of healthcare provider needs.
| S-EPMC7514042 | biostudies-literature
Project description:BackgroundSevere combined immunodeficiency (SCID) is a group of life-threatening genetic disorders responsible for severe dysfunctions of the immune system. Despite the expansion of newborn screening in the U.S., there are gaps in healthcare providers' knowledge of SCID.MethodsWe recruited 277 U.S. healthcare providers for an online survey. The survey assessed providers' experience with SCID patients, knowledge about SCID, and needs and preferred formats for SCID-related informational resources. We examined differences between providers who have seen 2 or more patients with SCID (SCID provider group) and those who have seen 0-1 SCID patients (non-SCID provider group).ResultsOverall, 210 (75.8%) providers were included in the non-SCID provider group, and 121 (57.6%) of these providers were pediatricians. Compared to the SCID provider group, non-SCID provider group reported lower mean rating of SCID knowledge (x̄ = 4.8 vs. x̄ = 8.6, p < 0.0001) and higher informational needs. The largest informational needs identified by the non-SCID provider group were "understanding specific type of SCID" and "understanding what to expect across the lifespan." In the SCID provider group, the highest rated informational need was "family support referrals." Participants in the non-SCID provider group identified scientific publications and websites as preferred formats, with some variation between medical specialties.ConclusionBased on their experience with treating SCID patients, providers have varying levels of SCID knowledge and different informational needs. For providers who have encountered few SCID patients, informational needs start early, usually immediately after receiving a positive newborn screening result. These findings provide useful direction for the development and preferred outlets for receiving SCID-related information, with some variations between different types of providers. Results from this study will serve as a guide for creating relevant and accessible SCID resources for providers who can utilize them to improve care for SCID patients.
| S-EPMC8899266 | biostudies-literature
Project description:Changes in word production occur across the lifespan. Previous studies have shown electrophysiological, temporal, and functional differences between children and adults accompanying behavioral changes in picture-naming tasks (Laganaro, Tzieropoulos, Fraunfelder, & Zesiger, 2015). Thus, a shift toward adult-like processes in referential word production occurs somewhere between the ages of 13 and 20. Our aim was to investigate when and how children develop adult-like behavior and brain activation in word production. Toward this aim, performance and event-related potentials (ERP) in a referential word production task were recorded and compared for two groups of adolescents (aged 14 to 16 and 17 to 18), children (aged 10 to 13), and young adults (aged 20 to 30). Both groups of adolescents displayed adult-like production latencies, which were longer only for children, while accuracy was lower in the younger adolescents and in children, compared to adults. ERP waveform analysis and topographic pattern analysis revealed significant intergroup differences in key time-windows on stimulus-locked ERPs, both early (150-220 ms)-associated with pre-linguistic processes-and late (280-330 ms)-associated with lexical processes. The results indicate that brain activation underlying referential word production is completely adult-like in 17-year-old adolescents, whereas an intermediate pattern is still observed in adolescents aged 14 to 16 years old, although their production speed, but not their accuracy, is already adult-like.
| S-EPMC10158562 | biostudies-literature
Project description:PurposeThis international study aimed to compare healthcare professionals' perspectives on the unmet needs of their cancer patients with those of family caregivers and to investigate the degree to which patients' age group moderates the associations.MethodsHealthcare professionals involved in the care for cancer patients and their family caregivers were invited to participate in the International Psycho-Oncology Society (IPOS) Survivorship Online Survey. A total of 397 healthcare professionals from 34 countries provided valid study data. The participants evaluated whether the unmet need was the same for all age groups of patients and the degree of their patients' needs not being met per patients' age group. They evaluated the same questions for family caregivers.ResultsPatients' unmet needs in medical care were evaluated as greater than those of caregivers across all age groups. On the other hand, pediatric patients' unmet needs for spiritual concerns, sexuality/intimacy, and insomnia/fatigue were evaluated as greater than those of caregivers, whereas adolescent and young adult patients' unmet needs for symptom management were greater than those of caregivers. Patients' other unmet needs were evaluated as comparable with those of caregivers regardless of age groups.ConclusionThe findings provide insights how best healthcare providers stratify resources to address the unmet needs of patients and caregivers by the patients' age. Development of systematic assessment of unmet needs and provision of interventions tailored for patients' lifespan to address the unmet needs of cancer patients, and caregivers are warranted.
| S-EPMC10715848 | biostudies-literature
Project description:Inconsistencies in outcome reporting and frequent omission of patient-centered outcomes can diminish the value of trials in treatment decision making. We identified critically important outcome domains in kidney transplantation based on the shared priorities of patients/caregivers and health professionals.In a 3-round Delphi survey, patients/caregivers and health professionals rated the importance of outcome domains for trials in kidney transplantation on a 9-point Likert scale and provided comments. During rounds 2 and 3, participants rerated the outcomes after reviewing their own score, the distribution of the respondents' scores, and comments. We calculated the median, mean, and proportion rating 7 to 9 (critically important), and analyzed comments thematically.One thousand eighteen participants (461 [45%] patients/caregivers and 557 [55%] health professionals) from 79 countries completed round 1, and 779 (77%) completed round 3. The top 8 outcomes that met the consensus criteria in round 3 (mean, ?7.5; median, ?8; proportion, >85%) in both groups were graft loss, graft function, chronic rejection, acute rejection, mortality, infection, cancer (excluding skin), and cardiovascular disease. Compared with health professionals, patients/caregivers gave higher priority to 6 outcomes (mean difference of 0.5 or more): skin cancer, surgical complications, cognition, blood pressure, depression, and ability to work. We identified 5 themes: capacity to control and inevitability, personal relevance, debilitating repercussions, gaining awareness of risks, and addressing knowledge gaps.Graft complications and severe comorbidities were critically important for both stakeholder groups. These stakeholder-prioritized outcomes will inform the core outcome set to improve the consistency and relevance of trials in kidney transplantation.
| S-EPMC5603314 | biostudies-literature
Project description:IntroductionSexual minority (SM; e.g., lesbian, gay, bisexual) youth are disproportionately more likely to use tobacco than non-SM youth, yet there exist several critical gaps in knowledge. This study assessed (a) the timing of SM tobacco use disparities (e.g., during adolescence or early adulthood), (b) whether disparities generalize across different tobacco products, and (c) whether disparities differ by sex.MethodsData were from a 6-year prospective cohort of diverse high school students from Southern California who were followed into early adulthood (9 waves, 2013-2019). SM (vs. non-SM) differences in past 6-month use were assessed for: any tobacco products, cigarettes, e-cigarettes, other products (e.g., hookah), and multiple products. Disparities were modeled longitudinally across adolescence (high school) and the transition to early adulthood (end of high school to post-high school). Differences were tested by sex.ResultsAmong females, SM disparities were evident for all outcomes during both adolescence and early adulthood; no differences were observed among males. For example, SM (vs. non-SM) females had higher odds of cigarette (aOR = 4.4 [3.0-6.5]) and e-cigarette (aOR = 1.7 [1.2-2.4]) use, averaged across adolescence. The timing of disparities varied by product. For example, cigarette use disparities emerged prior to high school and persisted through adolescence and young adulthood, while e-cigarette use disparities were present in early adolescence and young adulthood only.ConclusionsYoung SM females are at especially high risk for tobacco use, across various tobacco products, throughout adolescence and young adulthood. Interventions must consider differences in the timing of disparities by product type.
| S-EPMC7946356 | biostudies-literature
Project description:BACKGROUND:Screening is an important component of understanding and managing frailty. This study examined older adults', caregivers' and healthcare providers' perspectives on frailty and frailty screening. METHODS:Fourteen older adults and caregivers and 14 healthcare providers completed individual or focus group interviews. Interviews were audio recorded, transcribed verbatim, and analyzed using line-by-line emergent coding techniques and inductive thematic analysis. RESULTS:The interviews yielded several themes with associated subthemes: definitions and conceptualizations of frailty, perceptions of "frail", factors contributing to frailty (physical,, cognitive, social, pharmaceutical, nutritional), and frailty screening (current practices, tools in use, limitations, recommendations). CONCLUSION:Older adults, caregivers and healthcare providers have similar perspectives regarding frailty; both identified frailty as multi-dimensional and dynamic. Healthcare providers need clear "next steps" to provide meaning to frailty screening practices, which may improve use of frailty-screening tools.
| S-EPMC7027098 | biostudies-literature