Treatment adherence of youth and young adults with and without a chronic illness

The present study was undertaken to explore the psychosocial functioning of young people with chronic illness, their beliefs about treatment adherence, difficulties with adherence and concerns about living with their illness. A small correlational study was undertaken to compare the psychosocial functioning of young people, with and without chronic illness, aged between 12 and 24 years. Subjects were recruited from a metropolitan teaching hospital. Group 1 included 44 young people with chronic illness; Group 2 included 41 young people without chronic illness. Both groups were divided on the basis of age: younger (12-18 years, n = 24); older (19-24 years, n = 61) and sex (female = 43; male = 42). Subjects completed the Achenbach self-report questionnaire as a measure of psychosocial functioning, and a second questionnaire constructed for this study to explore treatment adherence. Psychosocial functioning scores were found to be similar on the majority of subscales. Young women with chronic illness were, however, found to have significantly higher internalizing scores than young women without chronic illness. A significant negative relationship was found for the chronic illness group between internalizing scores and treatment adherence. The findings highlight potential areas of difficulty in psychosocial functioning of some young people with chronic illness. They also suggest the existence of a subgroup of young people with chronic illness who experience more problems than their peers. More research is needed to generate evidence about this possible subgroup to determine predictors of psychosocial functioning and test the timing and efficacy of psychosocial interventions.     

Integrative holistic approaches for children,adolescents, and young adults with sickle cell disease: A single center experience

ContextPainful vaso-occlusive crises (VOCs) associated with sickle cell disease (SCD) are the most common cause of morbidity, hospitalizations, and poor quality of life. Additional symptoms such as sleep disturbances, fatigue, and stress are also common. Non-traditional approaches are often used by families, but concerns remain that patients may forgo standard of care effective therapies in favor of dangerous unproven alternatives.ObjectivesTo describe a single center experience related to a multidisciplinary integrative medicine clinic within the division of hematology dedicated to children and young adults with SCD.MethodsThe Sickle Cell Integrative Clinic at Children’s National Hospital services patients with SCD. The main goal of this clinic is to provide access to non-pharmacologic interventions, and to manage patients’ symptoms in a holistic manner along with standard of care management of SCD. This IRB approved study evaluated experiences of both patients and parents who attended this clinic.ResultsThirty-seven unique patients attended this clinic over 2 years and 31 participated in the study. After attending the SCD integrative clinic, the majority of patients reported integrative therapies to be an acceptable way of treating pain and believed these to be effective. Overall, the vast majority (88 %) of patients reported having a positive experience with the therapies offered in the clinic. None of the patients experienced any adverse events related to integrative therapies provided in the clinic.ConclusionOur experience suggests that encouraging conversations and offering safe and potentially effective integrative therapies alongside conventional SCD therapies under medical guidance allows patients to have an open discussion about their beliefs and treatment goals, improves patient satisfaction and can improve outcomes.     

Unmet needs and health care utilization in young adults with cerebral palsy

Purpose. To gain insight into the unmet needs and utilization of health care of young adults with cerebral palsy (CP) and to explore relations between unmet needs, health care utilization and subject characteristics.

Method. A cross-sectional study was performed in 29 young adults with CP without severe learning disabilities (IQ > 70). Subject characteristics such as age, gender, limb distribution, level of gross motor functioning, level of education and perceived participation and autonomy were measured. Outcome measures were the Southampton Needs Assessment Questionnaire, Impact on Participation and Autonomy and a questionnaire on health care utilization.

Results. Young adults with CP reported unmet needs mostly on information (79%), mobility (66%) and health care (66%). About half of the participants visited a rehabilitation physician (52%) or a physical therapist (55%) in the past year. Participants with lower levels of gross motor functioning were found to have more unmet needs and visited various health care professionals more often than young adults with higher levels of gross motor functioning. However, participants with higher levels of gross motor functioning still reported several unmet needs.

Conclusions. Although young adults with CP frequently receive treatment from health care professionals, they indicate unmet needs with respect to several areas such as information on diagnosis, functional mobility and formal health care. In the treatment of young adults with CP, attention should be paid to these aspects.     

Outcomes of adolescents and young adults with chronic-phase chronic myeloid leukaemia treated with tyrosine kinase inhibitors

IntroductionFew studies have reported the outcomes of adolescents and young adults (AYAs) with chronic-phase chronic myeloid leukaemia (CML-CP) on tyrosine kinase inhibitors (TKIs).Materials and methodsWe retrospectively analysed the clinical features, treatment response, and long-term outcomes of 42 AYA patients, in comparison to older patients. The initial therapies of AYA patients between 2001 and 2016 included imatinib (n = 24), dasatinib (n = 13) and nilotinib (n = 5).ResultsIn AYA patients, the peripheral blood (PB) white blood cell count and percentage of blasts at the diagnosis were significantly higher, haemoglobin levels were lower and the spleen size was larger. The major molecular response (MMR), event-free survival (EFS) and overall survival (OS) rates were comparable. A sub-analysis comparing imatinib to second-generation TKIs as the initial therapy also showed that their prognosis was comparable.DiscussionIn conclusion, the tumour burden at the diagnosis of CML-CP is higher in AYA patients; however, their prognosis was not worse in comparison to older patients treated with TKIs.

KEY MESSAGES

• Few studies have reported the outcomes of adolescents and young adults (AYAs) with chronic-phase chronic myeloid leukaemia (CML-CP) on tyrosine kinase inhibitors (TKIs). This study showed the tumour burden at the diagnosis of CML-CP is higher in AYA pa tients; however, their prognosis was not worse in comparison to older patients treated with TKIs. Understanding the biological and non-biological features of AYA patients with CML-CP on TKI therapy is essential for better management and to improve the outcomes.

     

Collaborative multidisciplinary team approach to fertility issues among adolescent and young adult cancer patients

Cancer treatment and the field of reproductive technology have each made impressive advancements in the last decade. Improved cancer treatment and survival rates have increased the number of cancer survivors, who might benefit from an array of fertility preservation strategies provided by emerging and advanced assisted conception technology. The challenge becomes bridging the gap between these two separate disciplines to ultimately improve the quality of life for cancer survivors. This paper discusses the issues and process involved with bringing these two teams of health-care professionals together. This model provides a framework for coordinating efforts in providing fertility preservation options to patients undergoing treatment for cancer. Effective multidisciplinary teams that include: oncologists, nurses in the specialties of oncology and infertility, social workers, reproductive endocrinology and infertility specialists, andrologists, and embryologists are required to work together in order to achieve success. The result of this unique team approach is not only a cancer survivor, but one whose quality of life might be enhanced by being able to have a child of his or her own in the future.     

青壮年高血压患者遵医行为现状调查

目的 了解青壮年高血压患者遵医行为的现状.方法 采用自行设计的问卷对青壮年高血压患者在服药、饮食、睡眠、运动、自我监测、寻求健康帮助等方面情况进行调查.结果 青壮年高血压患者遵医行为不佳,主要表现在以下方面：不注重运动,不能做到定时、定量运动;近半患者不能按时、按量、按种类服药;大多患者没有定期到医疗单位监测血压和自我监测症状.本组患者三餐规律、食量适中遵医行为较好.结论 应加强对青壮年高血压患者的健康宣教,积极创造条件,改进青壮年高血压患者的遵医行为,从而提高患者远期的生活质量和健康水平.     

Cholecystosonography in children with sickle cell disease: technical approach and clinical results

Forty-five children with sickle cell anemia were studied with meticulous cholecystosonograms using a 5-MHz thyroid transducer. Good-quality images were obtained. The most informative and useful view was the left-side-down decubitus study with the ultrasound gantry angled 45% to the anteroposterior axis. Rotating the patient rapidly through 360 degrees did not increase the information content of the examination. We found that one third of a random group fo children with sickle cell anemia will have gallstones and one fifth will have"sludge". A kinked deformity of the gallbladder may simulate a gallstone. Neither age, sex, weight, physical findings (except for hepatomegaly), nor a variety of biochemical measurements of the blood will be of much value in predicting gallbladder disease in any given patient.     

Acute and chronic pain management in patients with sickle cell disease in the modern era: a comprehensive review

Sickle cell disease (SCD) is the most common inherited red blood cell (RBC) disorder worldwide, resulting in chronic hemolytic anemia, vaso-occlusion, tissue hypoxia, and ultimately end organ damage. The hallmark of the disease is manifested by vaso-occlusive crisis (VOC) resulting in acute on chronic pain, and the most common cause for presentation to the emergency department and hospital admission. The management of pain for patients with SCD in the U.S. has historically been socially and politically complex with most patients experiencing pain on a daily basis but not seeking immediate medical attention. The pathophysiology of acute and chronic pain in SCD is multifactorial and complex. Here, we describe factors contributing to acute and chronic pain in SCD and management strategies.     

Opioid doses and acute care utilization outcomes for adults with sickle cell disease: ED versus acute care unit

Background

Acute care units (ACUs) with focused sickle cell disease (SCD) care have been shown to effectively address pain and limit hospitalizations compared to emergency departments (ED), the reason for differences in admission rates is understudied. Our aim was compare effects of usual care for adult SCD pain in ACU and ED on opioid doses and discharge pain ratings, hospital admission rates and lengths of stay.