Lifelong Care Research Articles

Exploring caregivers’ perceptions of community-based service requirements of patients with spinal cord injury: a qualitative study

BackgroundThe incidence of spinal cord injury is increasing worldwide. Patients with spinal cord injury and their families face many difficulties during the disease course. Caregivers are more involved with these patients than anyone else, so recognizing patients’ care requirements based on caregivers’ opinions can facilitate care provision to these people. The purpose of this study was to explore caregivers’ perceptions of the community-based services requirements of patients with spinal cord injury.MethodsThis qualitative research was conducted in Iran from Apr 2021 to Dec 2022 using the conventional content analysis method. The participants in the study included family caregivers and providers of home care services to patients with spinal cord injury, who were selected by purposeful sampling. Data were collected by conducting 14 face-to-face interviews and analyzed based on the method proposed by Lundman and Graneheim.ResultsData analysis led to the extraction of 815 primary codes, which were organized into two themes: community reintegration (with two categories, including the need to provide a suitable social platform and lifelong care) and palliative care (with two categories, including family conference and survival management).ConclusionSocial facilities and infrastructure should be modified in a way that patients with spinal cord injury can appropriately benefit from community-based care services and an independent satisfactory life. Palliative care should be continuously provided from the time of lesion development until the patient’s death.

Measures of Retention in HIV Care: A Study Within a Review.

People living with HIV (PLHIV) need lifelong medical care. However, retention in HIV care is not measured uniformly, making it challenging to compare or pool data. The objective of this study within a review (SWAR) is to describe the assortment of definitions used for retention in HIV care in randomized controlled trials (RCTs). We conducted a SWAR, drawing data from an overview of systematic reviews on interventions to improve the HIV care cascade. Ethics review was not required for this analysis of secondary data. We identified RCTs of interventions used to improve retention in care for PLHIV, including all age groups and extracted the definitions used and their characteristics. We identified 50 trials that measured retention published between 2007 and 2021 and provided 59 definitions for retention in care. The definitions consisted of nine different characteristics with follow-up time (n = 47), and clinical visits (n = 36) most used. The definitions of retention in HIV care are highly heterogeneous. In this study, we present the pros and cons of characteristics used to measure retention in HIV care.

Street Psychiatrists Build Trust, Offer Hope to Homeless Patients With SMI

Street Psychiatrists Build Trust, Offer Hope to Homeless Patients With SMI

Redesigning Care for the Management of Postpartum Hypertension: How Can Ob-Gyns and Primary Care Physicians Partner in Caring for Patients after a Hypertensive Pregnancy?

The standard care model in the postpartum period is ripe for disruption and attention. Hypertensive disorders of pregnancy (HDPs) can continue to be a challenge for the postpartum person in the immediate postpartum period and is a harbinger of future health risks. The current care approach is inadequate to address the needs of these women. We propose a model for a multidisciplinary clinic and collaboration between internal medicine specialists and obstetric specialists to shepherd patients through this high-risk time and provide a bridge for lifelong care to mitigate the risks of a HDP. KEY POINTS: · HDPs are increasing in prevalence.. · The postpartum period can be more complex for women with HDPs.. · A multidisciplinary clinic could fill the postpartum care gap for women with HDP..

Protocol for the development of a core outcome set for the optimisation of treatment and follow-up of patients with an anorectal malformation (ARM): The ARM and OUtcome Review (ARMOUR)-project

BackgroundPrimary treatment of an anorectal malformation (ARM) is surgical restoration of the anatomy. These children can experience many problems later in life; therefore, a long-term follow-up by an experienced team...

Striving for a pragmatic contribution of biomarkers results to lifelong health care.

The increased role of preventive medicine in healthcare and the rapid technological advancements, have deeply changed the landscape of laboratory medicine. In particular, increased investments in newborn screening tests and policies have been observed. Aim of this paper is to characterize how laboratory professionals engaged in clinical chemistry or newborn screening, in collaboration with experts in econometric, bioinformatics, and biostatistics may address a pragmatic use of laboratory results in the decision-making process oriented toward improvement of health care outcomes. The effectiveness of biomarkers on healthcare depends on several factors such as analytical performance, prevalence of the disease, integration of the test within thediagnostic algorithm, associated costs, and social/economic impact of false positive and false negative results. Cost-effectiveness analysis needs to be performed and reliability achieved, by overcoming analytical pitfalls andby improving interpretative criteria. These are challenging issues common to clinical chemistry and newborn screening tests. Following the experience in clinical chemistry, one of the main issues to be approached in newborn screening tests, is the lack of harmonization of results obtained by different methods and the limited healthcare effectiveness. The focus on prevention is a crucial opportunity for laboratory medicine to change how to approach the effectiveness of biomarkers on healthcare. The consolidation within clinical laboratories of professionals with different technical and methodological expertise coupled with the need to produce and manage large sets of data, require the cooperation of professionals from other disciplines to characterize the impact of the tests on epidemiological outcomes for health care policy making process.

Reproductive Health of Women with Congenital Heart Defects.

This report provides an overview of the unique reproductive health issues facing women with congenital heart defects (CHDs) and of the clinical care and professional guidelines on contraception, preconception care, and pregnancy for this population. It describes Centers for Disease Control and Prevention (CDC) activities related to surveillance of reproductive health issues among females with CHDs. It also describes CDC's work bringing awareness to physicians who provide care to adolescents and women with CHDs, including obstetrician/gynecologists, about the need for lifelong cardiology care for their patients with CHDs.

Telenutrition for the management of inflammatory bowel disease: Benefits, limits, and future perspectives.

Patients with inflammatory bowel disease (IBD) require lifelong and personalized care by a multidisciplinary healthcare team. However, the traditional medical model is not ideal for patients who require continuous close monitoring and whose symptoms may dramatically worsen between regularly scheduled visits. Additionally, close dietary follow-up and monitoring of IBD in a traditional setting are challenging because of the disease complexity, high pressure on outpatient clinics with a small number of IBD specialist dietitians, and rising incidence. Given the significant burden of IBD, there is a need to develop effective dietary management strategies. The coronavirus disease 2019 pandemic caused an unprecedented shift from in-person care to delivering health care via technological remote devices. Traditional nutrition therapy and consultation can be provided by telenutrition through remote electronic communication applications that could greatly benefit patient care. Telenutrition might be useful, safe, and cost-effective compared with standard care. It is likely that virtual care for chronic diseases including IBD will continue in some form into the future. This review article summarizes the evidence about telenutrition applications in the management of IBD patients, and we gave an overview of the acceptance and impact of these interventions on health outcomes.

'Attorneys of the Poor': the lived experience of general practitioners working in disadvantaged parts of rural Ireland.

The experience of structural violence impacts not only patients but also GPs who deliver their primary care. Farmer (1999) claims that 'sickness due to structural violence results from neither culture nor pure individual will, but historically given and economically driven processes and forces that conspire to constrain individual agency'. I aimed to explore qualitatively the lived experience of GPs in remote rural areas who cared for disadvantaged populations selected from the Haase-Pratschke Deprivation Index (2016). I visited ten GPs in remote rural areas, did semi-structured interviews, explored the hinterland of their practices and observed the historical geography of their locality. In all cases, interviews were transcribed verbatim. NVivo was used for thematic analysis using Grounded Theory. Findings were framed in the literature around postcolonial geographies, care and societal inequality. Participants were aged from 35 years to 65 years; half were women and half were men. Three main themes emerged: GPs value their lifeworld; they feel at high risk from over-work, inaccessible secondary care for patients and under-acknowledgment of their work; and they experience satisfaction in providing lifelong primary care. They fear that difficulties recruiting younger doctors may terminate the continuity of care that creates a sense of place. Rural GPs are linchpins of community for disadvantaged people. But GPs suffer the effects of structural violence and feel alienated from being their personal and professional best. Factors to consider are the roll-out of the Irish government's 2017 healthcare policy, Sláintecare, changes wrought by the COVID-19 pandemic in the Irish healthcare system and poor retention of Irish-trained doctors.

Adults Are Not Just Large Kids: Caring for Adults in Pediatric Hospitals.

Adults Are Not Just Large Kids: Caring for Adults in Pediatric Hospitals.

Long-Term Outcomes for Living Kidney Donors With Early Guideline-Concordant Follow-up Care: A Retrospective Cohort Study.

Current guidelines recommend that living kidney donors receive lifelong annual follow-up care to monitor kidney health. In the United States, the reporting of complete clinical and laboratory data for kidney donors has been mandated for the first 2 years post-donation; however, the long-term impact of early guideline-concordant care remains unclear. The primary objective of this study was to compare long-term post-donation follow-up care and clinical outcomes of living kidney donors with and without early guideline-concordant follow-up care. Retrospective, population-based cohort study. Linked health care databases were used to identify kidney donors in Alberta, Canada. Four hundred sixty living kidney donors who underwent nephrectomy between 2002 and 2013. The primary outcome was continued annual follow-up at 5 and 10 years (adjusted odds ratio with 95% confidence interval, LCLaORUCL). Secondary outcomes included mean change in estimated glomerular filtration rate (eGFR) over time and rates of all-cause hospitalization. We compared long-term follow-up and clinical outcomes for donors with and without early guideline-concordant care, defined as annual physician visit and serum creatinine and albuminuria measurement for the first 2 years post-donation. Of the 460 donors included in this study, 187 (41%) had clinical and laboratory evidence of guideline-concordant follow-up care throughout the first 2 years post-donation. The odds of receiving annual follow-up for donors without early guideline-concordant care were 76% lower at 5 years (aOR 0.180.240.32) and 68% lower at 10 years (aOR 0.230.320.46) compared with donors with early care. The odds of continuing follow-up remained stable over time for both groups. Early guideline-concordant follow-up care did not appear to substantially influence eGFR or hospitalization rates over the longer term. We were unable to confirm whether the lack of physician visits or laboratory data in certain donors was due to physician or patient decisions. Although policies directed toward improving early donor follow-up may encourage continued follow-up, additional strategies may be necessary to mitigate long-term donor risks.

Inflammatory bowel disease in Saudi Arabia: a review article

Inflammatory Bowel Disease (IBD) encompasses chronic intestinal disorders, like ulcerative colitis (UC) and Crohn's disease, causing gastrointestinal (GI) tract inflammation. Saudi Arabia, particularly among pediatric populations, has seen an increasing prevalence of IBD. Clinical symptoms, including abdominal pain, diarrhea, weight loss, and rectal bleeding, significantly impact patients' lives, requiring lifelong medical care, especially for children. The study highlights the growing burden of IBD in Saudi Arabia due to insufficient epidemiological data and rising disease incidence. Early IBD diagnosis is crucial for successful management and improved outcomes. Effective treatments for mild to moderate UC, such as 5-aminosalicylic acid-based drugs like mesalazine and sulfasalazine, show promising results. However, patients may experience ongoing GI symptoms even after successful treatment, underscoring the need for comprehensive care. Frequent remissions and relapses pose a challenge, necessitating continuous monitoring and appropriate medical intervention. Untreated symptoms can negatively impact patients' well-being and increase healthcare expenditures. Hence, exploring better approaches for long-term symptom control and mucosal repair is essential. In severe cases, surgical interventions like total colectomy become necessary, but the focus should be on optimizing medical therapies to reduce the need for drastic measures. In conclusion, early detection, accurate diagnosis, and proper management of IBD in Saudi Arabia are vital. Collaborative efforts among healthcare professionals, researchers, and policymakers are required to gather comprehensive epidemiological data and develop targeted strategies for improving IBD care. Addressing these challenges and opportunities can enhance the quality of life for IBD patients in Saudi Arabia and potentially alleviate the burden on the healthcare system.

Abstract B042: Understanding unmet needs of adult survivors of childhood cancer in California’s Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment

Abstract Childhood cancer survivors are at elevated risk of poor health outcomes as they age due to late effects from past cancer treatments. Lifelong risk-based survivorship care is recommended; however, those who lack insurance, have lower income and education, or live in a socioeconomically disadvantaged area are less likely to receive this care, contributing to health disparities. Working toward the goal of improving equitable access to care for cancer survivors, the Stanford Cancer Survivorship Program has partnered with Jacob’s Heart, a nonprofit community organization that supports families of children with cancer in California’s Salinas Valley, a socioeconomically disadvantaged region with a large Latinx farmworker population and high rates of limited English proficiency. Jacob’s Heart provides material resources (financial, food, transportation) and psychosocial support (1:1 and group counseling, social activities) to families during treatment. Together with Jacob’s Heart, we are conducting a needs assessment in accordance with community-based participatory research principles. We present preliminary findings of a qualitative study designed to identify post-treatment concerns, needs, and barriers to cancer survivorship care in the Salinas Valley communities. Semi-structured interviews were conducted with Jacob’s Heart staff, adolescent/young adult (AYA) cancer survivors, and parents of cancer survivors. Eligible participants were ≥5 years post cancer diagnosis, ≥15 years of age, spoke English or Spanish, and received services from Jacob’s Heart during their treatment. The Jacob’s Heart team led recruitment using purposive sampling; 7 staff members, 19 AYA cancer survivors and 13 parents of cancer survivors were recruited. Interviews were conducted in-person or by video or telephone, in English or Spanish with professional interpreters if needed, and transcribed verbatim. Interview topics included demographics, post-treatment healthcare experiences, challenges and concerns related to prior treatment, sources of support, and suggestions for resources. Data were analyzed qualitatively using reflexive thematic analysis based on grounded theory and the constant comparative method. Preliminary findings indicate concerns among the staff around helping families adjust to life post-treatment and helping AYAs transition to independence as young adults. AYAs voiced communication challenges around survivorship topics (overwhelmed by too much information, worried about future health problems, yet hesitant to discuss with healthcare teams) and expressed the need for age-specific social connections and peer support. Further analysis of AYA and parent interviews is ongoing and will be presented at the time of the meeting. This study highlights the strength of a community-academic partnership to understand the lived experiences of AYA cancer survivors and their families and to identify opportunities to improve care. Findings will inform future collaborative interventions and projects that can be implemented in the community to address the unmet needs. Citation Format: Stephanie M. Smith, Caroline Pecos-Duarte, Evelyn Tolamatl Ariceaga, Elle Billman, Anmol Teer, Catherine Benedict, Mary Smith, Sandy Montes, Esmeralda Rivera, Daniela Ramirez, Heidi Boynton, Lidia Schapira. Understanding unmet needs of adult survivors of childhood cancer in California’s Salinas Valley: A community-academic partnership to develop programs for families after cancer treatment [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr B042.

Provider’s perspectives regarding transitional urologic care process: A scoping review

ObjectiveTo generate a scoping review that summarizes perceptions and attitudes of urology providers towards the transitional urologic care process. Likewise, summarize their identified barriers, facilitators, and ideal transition care for patients with genitourinary conditions. MethodA systematic literature search was performed in Oct 2021. Records were identified for studies relevant to assessing urology specialists' practice variation, perception of barriers, and attitudes toward transitional care of patients needing life-long urologic care. The methodological quality of the cross-sectional studies was assessed using AXIS. The information extracted was clustered according to identified themes from the included studies. This scoping review was part of a systematic review registered on PROSPERO-(CRD42022306229). ResultsA total of 641 records were retrieved from electronic medical databases and cross-referencing. Ultimately, ten studies were included in this scoping review, conducted in the USA (n = 7), Canada, United Kingdom, and Italy. There is a wide variation in transitional care practices and preferences. However, the common themes extracted were: appropriate age to start the transition, additional training of the providers involved in transitional care, common transition plans, and practices, characteristics of multidisciplinary teams, potential barriers, areas of improvement, or facilitators for a better transitional process. ConclusionCommon to all reports, multiple barriers are perceived. Areas that require improvement and multidisciplinary systems are needed to enhance urologic transition care. In addition, factors such as the age cut-off between pediatric and adult care or which specialist should handle specific procedures and conditions before, during, and after transition are still unclear and typically depend on the stakeholders.

Strategies for Complex Reoperative Aortic Arch Reconstruction in Patients With Congenital Heart Disease.

Aortic dilation is common in patients with congenital heart disease including those with a bicuspid aortic valve, connective tissue disease, coarctation of the aorta, and conotruncal defects. In addition, neo-aortic dilation has been described in patients after aortic reconstruction including the Norwood procedure, the arterial switch operation, and the Ross procedure. Although aortic catastrophe is rare in patients with congenital heart disease, common pathologic endpoints in these patients likely manifest with similar aortic tissue behavior. A lifelong care model with similar indications for surveillance and prophylactic repair to other more common aortopathies is therefore warranted. Still, reoperative aortic arch reconstruction in these patients is often a complex and high-risk endeavor, and in all cases, a tailored and adaptable plan ensuring adequate myocardial and cerebral protection with appropriate rescue measures is paramount. A surgical team taking on these challenging cases should possess an armamentarium of open, hybrid, and endovascular techniques which can be individualized to a patient's unique anatomy, surgical history, and concomitant lesions as well as the team's measured outcomes and experience.

Describing healthcare concerns of adolescents and adults with cerebral palsy

AimTo identify healthcare concerns of adolescents and adults with cerebral palsy (CP) followed in a multidisciplinary rehabilitation program and identify patient factors associated with the number of concerns raised. MethodA retrospective chart review of initial consultations of 241 people with CP (53 % male) aged 14 years or older (mean 27 y 5mo, SD 13 y 2mo), over a three-year period. Descriptive statistics were used to summarize data and explore associations. Poisson’s regression was used to predict healthcare concerns from patient demographic factors. ResultsA total of 2237 distinct concerns were raised by the participants, with a median of 9 (range 1–34) concerns per person. Ten healthcare concern categories were reported by more than 25 % of the sample. Only age was associated with the number of healthcare concerns (r = 0.25, p < 0.001). Age and GMFCS significantly predicted total number of healthcare concerns. InterpretationAdolescents and adults with CP reported a high number of healthcare concerns at the initial visit to the Transitional and Lifelong Care program and the number of concerns may increase with advancing age. The concerns identified span a variety of biopsychosocial spheres and supports the need for ongoing specialty and multidisciplinary care of this population through their adult years.

Obesity and type2diabetes (Update 2023)

The body mass index (BMI) is avery crude measure of body fatness in individuals. Even normal weight persons can have too much body fat in cases of alack of muscle mass (sarcopenia), which is why additional measurements of waist circumference and body fatness, e.g. bioimpedance analysis (BIA), are recommended. Lifestyle management including nutrition modification and increase in physical activity are important measures for the prevention and treatment of diabetes. Regarding the treatment of type2diabetes, body weight is increasingly used as asecondary target parameter. The choice of anti-diabetic treatment and additional concomitant therapies is increasingly influenced by body weight. The importance of modern GLP‑1 agonists and dual GLP‑1 GIP agonists increases since these drugs target obesity and type2diabetes. Bariatric surgery is at present indicated with aBMI > 35 kg/m2 with concomitant risk factors, such as diabetes and can lead at least to partial diabetes remission but has to be incorporated into an appropriate lifelong care concept.

Burden of Care among Mothers Having Children with Thalassemia

Introduction: Thalassemia, an inherited disorder is characterized by reduction in the ability of the body to synthesize hemoglobin. Though care giving is a normal parental duty, providing lifelong care to thalassemic children may increase burden among parents. The objective of this study was to find out the burden of care among mothers having thalassemic children. Methods: This descriptive cross-sectional study was carried out among 100 mothers attending a Thalassemia day care center in Kathmandu, Nepal. Non-probability purposive sampling technique was used to collect data through interview using Zarit Burden Interview scale. Results: Findings revealed that out of 100 mothers, 19% had little or no burden, 43% had mild level of burden of care, 34% had moderate burden of care and 4% had severe burden of care. It was found that 43% of the mothers frequently felt that child is depended upon her, 20% of the mothers, frequently felt stressed from caring their children. 35% of the mothers frequently felt that money is insufficient to care for their child. Statistically significant association was found between level of burden with economic status (p=0.002) and place of residence (p=0.03). Conclusion: The study concludes that mothers face burden of caring the child having thalassemia. Burden of care among mothers tends to be influenced by the family economic status and residence. This burden should be minimized by health personnel through proper counseling and support to mothers of thalassemic children

How to best take care of young patients with glaucoma

AbstractPaediatric glaucoma is a potentially sight‐threatening disease and is considered the second leading cause of treatable childhood blindness. Paediatric glaucoma is a clinical entity including a wide range of conditions: primary congenital glaucoma, glaucoma secondary to ocular (e.g., aniridia, Peter's anomaly), or systemic disease (e.g., Sturge Weber) and glaucoma secondary to acquired condition (pseudophakic, traumatic, uveitic glaucoma). The treatment algorithm of childhood glaucoma is a step‐by‐step approach, often starting with surgery, as in primary congenital glaucoma cases. Medical therapy is also crucial in the management of paediatric glaucoma.Here we discuss the approach to a child with glaucoma, from the diagnosis to the medical and surgical treatment. Efficacy and side effects of each approach will be discussed.In the talk it is emphasized that paediatric glaucoma is one of the most challenging ocular disorder, requiring a step‐by‐step approach, several examinations, often multiple surgeries, and lifelong care and that a strong alliance between eye care staff and family is of paramount importance in this challenging but also rewarding journey.

EPH88 Determinants of Caregiving Burden Among Caregivers of Adult Patients With Beta-Thalassemia Major in China

β-thalassemia major is an autosomal recessive genetic disease which causes death and disability. The quality of life of adult patients with β-thalassemia major is significantly lower than that of children with β-thalassemia major due to the serious complications. Therefore, the adult patients with β-thalassemia major make lifelong care necessary. Moreover, the caregivers of adult patients bear not only the physical pressures of caring, but also the emotional and economic ones. Thus, this study examined the predictors of caregiver burden in adult patients with β-thalassemia major in China.