Ovarian Tissue Cryopreservation for Fertility Preservation in Patients with Hemoglobin Disorders: A Comprehensive Review.

Hemoglobin diseases like sickle cell disease (SCD) and ß-thalassemia (BT) present fertility challenges for affected patients. SCD and BT result from abnormal hemoglobin production or structure and pose numerous health concerns. Despite medical advancements improving the quality of life or even providing cures, SCD and BT pose unique fertility concerns for women. Young women with these disorders already contend with reduced ovarian reserve and a narrower fertile window, a situation that is compounded by the gonadotoxic effects of treatments like medications, transfusions, stem cell transplants, and gene therapy. While crucial for disease control, these interventions may lead to reproductive health issues, increasing infertility and early menopause risks. Ovarian tissue cryopreservation (OTC) offers potential for future motherhood to women with hemoglobin disorders facing infertility related to curative treatments. OTC involves surgically removing, preparing, and freezing ovarian tissue containing primordial follicles capable of producing mature oocytes, offering advantages over oocyte cryopreservation alone. However, the application of OTC for patients with hemoglobin disorders presents unique challenges, including special health risks, financial barriers, and access to care. This comprehensive literature review delves into the current state of ovarian tissue cryopreservation for fertility preservation in patients with hemoglobin disorders. Empowering patients with informed reproductive choices in the context of their hemoglobin disorders stands as the ultimate goal.

Are NCI Cancer Centers Providing Adolescents and Young Adults With Cancer Focused Clinical Services? A National Survey.

BACKGROUND: This study sought to evaluate the current services and delivery models of adolescent and young adult oncology (AYAO)-specific programs at NCI-designated Cancer Centers (NCI-CCs). PATIENTS AND METHODS: NCI, academic, and community cancer centers were electronically sent surveys from October to December 2020 and administered via REDCap. RESULTS: Survey responses were received from 50 of 64 (78%) NCI-CCs, primarily completed by pediatric oncologists (53%), adult oncologists (11%), and social workers (11%). Half (51%) reported an existing AYAO program, with most (66%) started within the past 5 years. Although most programs combined medical and pediatric oncology (59%), 24% were embedded within pediatrics alone. Most programs saw patients aged 15 (55%) to 39 years (66%) mainly via outpatient clinic consultation (93%). Most centers reported access to a range of medical oncology and supportive services, but dedicated services specifically for adolescent and young adults (AYAs) were available at a much lower extent, such as social work (98% vs 58%) and psychology (95% vs 54%). Although fertility preservation was offered by all programs (100%), only two-thirds of NCI centers (64%) reported providing sexual health services to AYAs. Most NCI-CCs (98%) were affiliated with a research consortium, and a lesser extent (73%) reported collaboration between adult and pediatric researchers. Nearly two-thirds (60%) reported that AYA oncology care was important/very important to their respective institution and reported providing good/excellent care to AYAs with cancer (59%), but to a lesser extent reported good/excellent research (36%), sexual health (23%), and education of staff (21%). CONCLUSIONS: Results of this first-ever national survey to assess AYAO programs showed that only half of NCI-CCs report having a dedicated AYAO program, and that areas of improvement include staff education, research, and sexual health services for patients.

Food Insecurity and Nutritional Challenges in Adolescent and Young Adult Cancer Survivors in the U.S.A.: A Narrative Review and Call to Action.

Advancements in cancer treatments over the past several decades have led to improved cancer survival in adolescents and young adults (AYAs, ages 15-39 years). However, AYA cancer survivors are at an increased risk for "late effects", including cardiovascular, pulmonary and bone diseases as well as fatigue, infertility and secondary cancers. The treatments for cancer may also alter taste, lead to nutritional deficiencies and increase financial burdens that, when taken together, may increase the risk of food and nutrition security in AYA cancer survivors. Furthermore, although AYAs are often merged together in cancer survivorship studies, adolescents and young adults have distinct developmental, psychosocial and pathophysiological differences that may modify their risk of nutritional challenges. In this narrative review and "Call to Action", rationale is provided for why there is a need to better understand nutritional challenges and food insecurity in AYA cancer survivors as a special population. Then, recommendations for next steps to advance knowledge and policy in this field are provided. In particular, integrating screening for food and nutrition insecurity and enhancing awareness of existing resources (e.g., the Supplemental Nutrition Assistance Program, SNAP) might help AYA cancer survivors combat nutritional deficiencies and reduce late effects while improving their overall survival and quality of life.

The perspectives of oncology healthcare providers on the role of palliative care in a comprehensive cancer center.

BACKGROUND: Palliative care (PC) is an essential part of oncologic care, but its optimal role within a cancer center remains unclear. This study examines oncology healthcare providers' perspectives about the role of PC at a comprehensive cancer center (CCC). METHODS: Physicians, nurses, and other oncology healthcare providers at a CCC were surveyed for their opinions about the role of inpatient and outpatient PC, preferences for PC services, and barriers to referral. Chi-squared tests and multiple regression analyses were performed to explore associations. RESULTS: We received 137/221 completed questionnaires (61% response rate). Respondents were generally female (78%), had ≤ 10 years of service (69%), and included physicians (32%), nurses (32%), and advanced practice providers (17%). Most respondents (82%) agreed that more patients could benefit from PC. They also agreed that PC is beneficial for both outpatient and inpatient management of complex pain (96 and 88%), complex symptoms (84 and 74%), and advanced cancer patients (80 and 64%). Transition to hospice (64 vs. 42%, p = 0.007) and goals of care (62 vs. 49%, p = 0.011) provided by PC services were more valued by respondents for the inpatient than for the outpatient setting. Barriers to utilizing PC included lack of availability, unsure of when to refer, and poor communication. The majority of respondents (83%) preferred a cancer focused PC team to provide high-quality care. CONCLUSIONS: Overall, the majority of oncology health care providers believe that more patients could benefit from PC, but opinions vary regarding the roles of inpatient and outpatient PC. Barriers and areas for improvement include availability, referral process, and improved communication.

A survey of cancer patients, caregivers, and providers regarding familiarity, importance, and utilization of supportive and integrative oncology services.

PURPOSE: Supportive and integrative oncology services aim to improve the quality of life of cancer patients. This study characterizes the views of these services among cancer patients, caregivers, and providers at a comprehensive cancer center. METHODS: A cross-sectional survey was administered in 2017-2018. The survey asked about participants' familiarity, perceived importance, use, accessibility, and barriers to 19 supportive and integrative oncology services using a Likert scale. Data were analyzed using the Kruskal-Wallis test and a proportional odds regression model. RESULTS: A total of 976 surveys were obtained (604 patient surveys, 199 caregiver surveys, 173 provider surveys). Patients were mostly female (56.3%), ≥60 years old (59.4%), and Caucasian (66%). Providers were an even distribution of nurses, physicians, and advanced practice providers. Patients felt social work and nutrition services were the most familiar (36.4% and 34.8%) and the most important (46.3% and 54.5%). Caregivers were also most familiar with those two services, but felt that nutrition and learning resources were most important. Social work and nutrition were easiest to access and used the most by both patients and providers. There was a positive correlation between accessibility and perceived importance. Being unaware was the most common barrier identified by patients (38.4%), providers (67.1%), and caregivers (33.7%). CONCLUSION: Social work and nutrition services were most familiar to respondents, and also generally the most important, accessible, and utilized. Lack of awareness was the most common barrier cited and suggests that increased efforts to educate patients and providers about other services available are needed.

Interest and Willingness to Pay for Integrative Therapies of Patients With Cancer and Caregivers.

PURPOSE: Complementary and integrative medicine (CIM) services are more prevalent in cancer centers but continue to be underutilized by patients. This study examines perspectives from patients and caregivers about these services being offered at a comprehensive cancer center. METHODS: Patients and caregivers were surveyed about their familiarity, interest, and experience with five CIM therapies: acupuncture, massage, meditation, music therapy, and yoga. Respondents were asked about their interest in and/or paying for these services at baseline, when recommended by their medical team, and when offered in a clinical trial. Respondents were also asked about perceived barriers to accessing these services. Chi-squared tests were performed to explore associations between past experience, interest levels, and willingness to pay. RESULTS: A total of 576 surveys were obtained (464 patients and 112 caregivers). Most respondents identified as White or Caucasian (65.6%), female (57.2%), had been a patient for < 3 years (74.2%), had some college education (73.8%), and made > $40,000 in US dollars as their annual household income (69.1%). Respondents were most familiar with therapeutic massage (34.2%) and least familiar with acupuncture (20.0%). The average interest in these services increased from 53.3% to 64.1% when recommended by a medical professional. Respondents were most willing to pay $1-60 for therapeutic massage (62.3%) and least willing to pay for meditation (43.7%). The main barriers to accessing CIM services were cost (56.0%) and lack of knowledge (52.1%). CONCLUSION: Overall, a significant proportion of patients and caregivers were unfamiliar with these five integrative therapies. Increasing education, decreasing cost, and a recommendation by medical professionals would improve CIM usage.

Case Report: Durable Response to Very Low Dose Tyrosine Kinase Inhibitors in Advanced Hepatocellular Carcinoma.

The oral tyrosine kinase inhibitors (TKI) sorafenib, regorafenib, and cabozantinib are approved for advanced hepatocellular carcinoma (aHCC) and improve survival. However, patients on these medications frequently require dose reductions or discontinuation due to multiple side effects leading to poor tolerability. Here we report three different aHCC patients with clinical responses outlasting those reported in their corresponding Phase 3 clinical trials on 1/8th the target dose for sorafenib, 1/4th the target dose for regorafenib and 1/6th the target dose for cabozantinib respectively. As these doses are below the minimal recommended doses on the FDA labels, this case series provides a preliminary demonstration that low dose TKI therapy can be effective and patients on TKIs should first assess for clinical response before empirically discontinuing TKI therapy on the basis of tolerating only a low dose.

The Influence of Spirituality and Religiosity on US Oncologists' Personal Use of and Clinical Practices Regarding Complementary and Alternative Medicine.

BACKGROUND: Cancer patients frequently use complementary and alternative medicine (CAM), and spirituality has been associated with CAM use among patients. We evaluated how oncologists' spirituality and religiosity are associated with personal use and patient recommendations for CAM. METHODS: A survey was mailed to 1000 medical oncologists in the United States. The questionnaire asked about oncologists' approaches to CAM use by patients, focusing on the use of herbs and supplement (HS), and about religiosity and spirituality. RESULTS: Of 937 deliverable questionnaires, 392 were returned (response rate 42%). Respondents were mostly men (71%) and Caucasian (76%), with a median age of 48. Approximately 16% reported no religion, 19% Jewish, 24% Catholic, 28% Christian, and 13% other religions. Eighteen percent reported attending religious services at least once a week, including 15% who attend several times per week. Twenty-eight percent reported high theological pluralism (skepticism regarding whether one religion is comprehensively and uniquely true); 58% described themselves as moderately or very spiritual. Self-reported spirituality and religious service attendance were associated with using CAM personally and recommending HS to patients. In multivariate analyses, moderate-high spirituality and attending religious services less than monthly was positively associated with personal use of CAM: odds ratio (OR) = 3.10 (confidence interval [CI] = 1.5-6.5) and OR = 3.04 (CI = 1.5-6.6), respectively. Physicians with moderate to high spirituality were more likely to report recommending CAM in general (OR = 3.07, CI = 1.3-7.1), but less likely to report recommending HS (OR = 0.33, CI = 0.14-0.75). CONCLUSION: Self-reported spirituality is a significant factor among US oncologists' decision to use CAM and recommend CAM to patients.