Need For Supportive Care Research Articles

Hemorrhagic cystitis in allogeneic stem cell transplantation: a role for age and prostatic hyperplasia

PurposeHemorrhagic cystitis (HC) is a frequent complication of allogeneic hematopoietic stem-cell transplantation (HSCT). HC worsens transplant outcomes and patient wellbeing in terms of pain, hospitalization, and need for supportive care. A deeper understanding of the risk factors of HC may lead to more intensive prevention in high-risk patients.MethodsIn this report, we analyzed 237 consecutive patients who received HSCT with the aim of identifying possible risk factors for HC and their consequences, with a particular focus on transplant- and gender-related risk factors.ResultsHC occurred in 17% of patients, with a higher incidence in males (21% vs 11%, p = 0.03). Risk factors identified for HC included age over 55 years, male recipient, HLA mismatch, reduced intensity conditioning, and cyclophosphamide-based graft-versus-host disease (GVHD) prophylaxis. Increased HC was seen in patients with grade II–IV acute GVHD and detectable BKV and JCV viruria. In a multivariate model, increased age remained significant (p = 0.013). Patients with HC had longer hospitalizations and increased non-relapse mortality (NRM). Among male recipients, independent risk factors for HC included age (p = 0.016) and prostate volume (p = 0.016). Prostatic hyperplasia (volume more than 40 cm3) occurred in 33% of male patients, of which 32% developed HC (compared with 16% of patients without prostatic hyperplasia; p = 0.032).ConclusionsAge is the most important risk factor for HC. Additional potential risk factors include cyclophosphamide-based GVHD prophylaxis and HLA mismatch. Among male recipients, prostatic hyperplasia is an additional independent risk factor. As HC is common and associated with prolonged hospitalization, more intensive prophylactic strategies should be considered in high-risk patients.

Nonfermenting, Gram-Negative Bacilli Causing Neonatal Sepsis in Odisha, India: Four-Year Surveillance.

IntroductionIn India, blood culture-positive sepsis results in mortality in 33%-35% of affected neonates. Nonfermenting Gram-negative bacilli (NFGNB), particularly Acinetobacter baumannii and Burkholderia cepacia commonly cause hospital-acquired infection.Materials and methodsWe performed a subgroup analysis as part of a prospective study conducted in a neonatal intensive care unit in a tertiary care hospital in Odisha, India, between January 2017 and December 2020. Neonates with blood culture-positive sepsis caused by NFGNB were enrolled in this study. Demographic characteristics of the neonates, clinical features of sepsis, complications, need for supportive care, and blood culture sensitivity patterns were recorded and analyzed.ResultsA total of 168 organisms were isolated in blood cultures during our study period, of which 48 (29%) were NFGNB species. Among these 48 species, A. baumannii (37.5%) and B. cepacia (33.3%) were the most common NFGNB in our study. Neonates with sepsis commonly exhibited feeding intolerance (64.5%), circulatory insufficiency that necessitated vasopressor treatment (54.1%), disseminated intravascular coagulopathy (35.4%), seizures (33.3%), and the need for respiratory support (56.2%). NFGNB were multidrug-resistant (MDR) in 70.8% of cases, and 93.7% of B. cepacia and 55.5% of A. baumannii were MDR.ConclusionsA. baumannii and B. cepacia are NFGNB commonly isolated in neonatal cases of blood culture-positive sepsis. The prevalence of MDR NFGNB sepsis is gradually increasing, which poses a threat to neonates. Strict aseptic precautions and antibiotic stewardship are thus mandatory in perinatal practice.

Needs and preferences of patients regarding atopic dermatitis care in the era of new therapeutic options: a qualitative study

To optimally tailor atopic dermatitis (AD) care to patients’ needs, especially considering the many emerging therapeutic options, insight into patients’ needs and preferences regarding AD care is needed. To explore patients’ needs and preferences regarding AD care, a qualitative study consisting of three focus groups with a total of 20 adult AD patients was conducted. All sessions were transcribed verbatim and inductively analyzed using several phases of coding to create an overview of patients’ needs and preferences. AD patients emphasized the need for a patient-tailored approach in all identified aspects of AD care. With regard to consultations, patients stressed the need for a personal approach and increased recognition of the disease impact, which should mainly be determined by patients. With regard to the organization of AD care, the need for psychosocial and medical supportive care as well as quick access to health-care providers during disease flares was emphasized. Within the decision-making process, patients indicated that the provided information, the role of the patient and physician, whether or not treatment goals should be set, and decisive factors for indication and feasibility of novel therapies should be patient dependent. AD care should be patient tailored with increased attention for the psychosocial burden, as well as better access to health care during disease flares. To provide patient-tailored care, the personal situation, needs, and preferences of the patient should be taken into account in the therapeutic decision-making process, with respect for the autonomy of the patient.

The Imperative to Reimagine Assisted Living.

Assisted living (AL) has existed in the United States for decades, evolving in response to older adults' need for supportive care and distaste for nursing homes and older models of congregate care. AL is state-regulated, provides at least 2 meals a day, around-the-clock supervision, and help with personal care, but is not licensed as a nursing home. The key constructs of AL as originally conceived were to provide person-centered care and promote quality of life through supportive and responsive services to meet scheduled and unscheduled needs for assistance, an operating philosophy emphasizing resident choice, and a residential environment with homelike features. As AL has expanded to constitute half of all long-term care beds, the increasing involvement of the real estate, hospitality, and health care sectors has raised concerns about the variability of AL, the quality of AL, and standards for AL. Although the intent to promote person-centered care and quality of life has remained, those key constructs have become mired under tensions related to models of AL, regulation, financing, resident acuity, and the workforce. These tensions have resulted in a model of care that is not as intended, and which must be reimagined if it is to be an affordable care option truly providing quality, person-centered care in a suitable environment. Toward that end, 25 stakeholders representing diverse perspectives conferred during 2 half-day retreats to identify the key tensions in AL and discuss potential solutions. This article presents the background regarding those tensions, as well as potential solutions that have been borne out, paving the path to a better future of assisted living.

How Caregivers Cope and Adapt When a Family Member Is Diagnosed With a Hematologic Malignancy: Informing Supportive Care Needs.

Informal family caregivers (FCs) of adults with various diseases including hematologic malignancy (HM) experience low quality of life and psychological well-being. Although HMs are life-threatening cancers associated with high mortality, numerous symptoms, and lengthy hospitalizations and are therefore likely to be challenging for FCs to cope with, there is scant research exploring FC experiences. The aim of this study was to describe the coping and adaptation of FCs of patients during diagnosis and treatment of HM. This study used a qualitative descriptive design to analyze semi-structured interview responses from FCs (N = 28) within 3 months of the patients' HM diagnosis. A content analysis was conducted to generate common themes. Family caregivers endorsed adaptive and maladaptive coping. Adaptive strategies included taking one day at a time, spirituality, engaging in pastimes, and utilizing emotional and instrumental family and community support. Maladaptive coping included wishful thinking, harmful habits, avoidance, and lacking or being unable to accept family and community support. Findings highlight the complexities of caregiver burden as they support their loved ones with HM. Family caregivers would benefit from receiving an interdisciplinary family-centered approach as their HM person is initiating treatment. Nurses should consider assessing the FCs' psychosocial needs to help facilitate appropriate services, such as palliative care consultations, social work referrals, support groups, and/or counseling.

Testing the efficacy of a couple-focused, tailored eHealth intervention for symptom self-management among men with prostate cancer and their partners: the study protocol

BackgroundMen with localized prostate cancer often experience urinary, sexual, bowel, and hormonal symptoms; general distress; pain; fatigue; and sleep disturbance. For men in an intimate relationship, these symptoms disrupt couples’ relationships and intimacy. The symptoms also reduce quality of life for both men and their partners, who are often their primary caregivers. Management of the negative effects of cancer and its treatment is a significantly under-addressed supportive care need for these men and their intimate partners. To address these unmet supportive care needs, our interdisciplinary team developed and pilot tested the usability and feasibility of an evidence-based, couple-focused, tailored eHealth intervention, “Prostate Cancer Education & Resources for Couples” (PERC). Based on the adapted stress and coping theoretical framework and developed with stakeholder involvement, PERC aims to improve quality of life for both men and their partners by enhancing their positive appraisals, self-efficacy, social support, and healthy behaviors for symptom management.MethodsWe will test the efficacy of PERC using a population-based, geographically and demographically diverse cohort in a randomized controlled trial. Primary aim: Assess if patients and partners receiving PERC will report greater improvement in their cancer-related quality of life scores than those in the control group (usual care plus the National Cancer Institute prostate cancer website) at 4, 8, and 12 months post-baseline. Secondary aim: Test if patients and partners in PERC will report significantly more positive appraisals and higher levels of coping resources at follow-ups than those in the control group. Exploratory aim: Determine if patient race and ethnicity, education, type of treatment, or couples’ relationship quality moderate the effects of PERC on patient and partner QOL at follow-ups.DiscussionThis study will provide a novel model for self-managing chronic illness symptoms that impact couples’ relationships, intimacy, and quality of life. It addresses the National Institute of Nursing Research’s goal to develop and test new strategies for symptom self-management to help patients and caregivers better manage their illness and improve quality of life. It also responds to calls for programs from the Institute of Medicine and American Cancer Society to address treatment-related effects and improve survivors’ QOL.Trial registrationCT.gov NCT03489057

Perceived Supportive Care Needs of Adolescents With Chronic Hepatitis B in a Resource-limited Setting.

In Ghana, adolescents are disproportionately affected by hepatitis B. However, studies into adolescents’ supportive care needs are lacking. The purpose of this exploratory qualitative study was to explore the supportive care needs of 18 adolescents with chronic hepatitis B who were receiving care at a tertiary hospital in Ghana. The data were processed using QSR Nvivo version 11.0 and analyzed using the Braun and Clarke procedure for thematic data analysis. According to the findings, adolescents with chronic hepatitis B have unmet supportive care needs ranging from information to financial need, psychological support, and social support. Explicitly, participants reportedly had a dilemma as to whether to keep or terminate their pregnancy to prevent transmission of the virus to their newborns. Physicians and nurses were perceived to be preoccupied with medication prescription and laboratory request writing rather than giving pretest and posttest counseling following diagnosis. This study highlights the need to have a tailor-made liver care for adolescents. Pretest and posttest counseling for adolescents with hepatitis B are also required.

Phytochemicals: A Novel Approach for the Management of Coronavirus Disease 2019

The severe acute respiratory syndrome coronavirus 2, formerly known as 2019 novel coronavirus, the causative pathogen of coronavirus disease 2019 is a major source of disaster in the 21st century. In the second meeting of the Emergency Committee, the World Health Organization declared that coronavirus disease 2019 is a “public-health emergency of international concern” on 30 January, 2020. Coronavirus is transmitted via airborne droplets from human to human or human to animal. Through membrane angiotensin-converting enzyme 2 exopeptidase receptor coronavirus enters in human cell. For the treatment of this sudden and lethal disease during coronavirus disease 2019, there are no specific anti-virus drugs or vaccines. Still, the development of these medicines will take months, even years. Currently there is need of supportive care and non-specific treatment to improve the symptoms of coronavirus disease 2019 infected patient. For this specific indication, rapid performance of herbal medicine or phytochemicals can contribute as an alternative measure. Phytochemicals are a powerful group of chemicals that are derived from plants origin hence causing fewer side effects because of less use of additives, preservatives or excipients. Hence, this review will focus on some phytochemicals which may control and prevent severe acute respiratory syndrome coronavirus 2. Further, the existing healing options, drugs accessible, ongoing trials and current diagnostics to treat severe acute respiratory syndrome coronavirus 2 have been discussed. We suggested phytochemicals extracted from herbal plants are potential novel therapeutic approaches, completely targeting severe acute respiratory syndrome coronavirus 2 and its pathways.

Machine learning model for predicting the length of stay in the intensive care unit for Covid-19 patients in the eastern province of Saudi Arabia

The COVID-19 virus has spread rapidally throughout the world. Managing resources is one of the biggest challenges that healthcare providers around the world face during the pandemic. Allocating the Intensive Care Unit (ICU) beds' capacity is important since COVID-19 is a respiratory disease and some patients need to be admitted to the hospital with an urgent need for oxygen support, ventilation, and/or intensive medical care. In the battle against COVID-19, many governments utilized technology, especially Artificial Intelligence (AI), to contain the pandemic and limit its hazardous effects. In this paper, Machine Learning models (ML) were developed to help in detecting the COVID-19 patients’ need for the ICU and the estimated duration of their stay. Four ML algorithms were utilized: Random Forest (RF), Gradient Boosting (GB), Extreme Gradient Boosting (XGBoost), and Ensemble models were trained and validated on a dataset of 895 COVID-19 patients admitted to King Fahad University hospital in the eastern province of Saudi Arabia. The conducted experiments show that the Length of Stay (LoS) in the ICU can be predicted with the highest accuracy by applying the RF model for prediction, as the achieved accuracy was 94.16%. In terms of the contributor factors to the length of stay in the ICU, correlation results showed that age, C-Reactive Protein (CRP), nasal oxygen support days are the top related factors. By searching the literature, there is no published work that used the Saudi Arabia dataset to predict the need for ICU with the number of days needed. This contribution is hoped to pave the path for hospitals and healthcare providers to manage their resources more efficiently and to help in saving lives.

Next-Generation Implementation of Chimeric Antigen Receptor T-Cell Therapy Using Digital Health.

Chimeric antigen receptor T-cell (CAR-T) therapy is a paradigm-shifting immunotherapy modality in oncology; however, unique toxicities such as cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome limit its ability to be implemented more widely in the outpatient setting or at smaller-volume centers. Three operational challenges with CAR-T therapy include the following: (1) the logistics of toxicity monitoring, ie, with frequent vital sign checks and neurologic assessments; (2) the specialized knowledge required for toxicity management, particularly with regard to CRS and immune effector cell-associated neurotoxicity syndrome; and (3) the need for high-quality symptomatic and supportive care during this intensive period. In this review, we explore potential niches for digital innovations that can improve the implementation of CAR-T therapy in each of these domains. These tools include patient-facing technologies and provider-facing platforms: for example, wearable devices and mobile health apps to screen for fevers and encephalopathy, electronic patient-reported outcome assessments-based workflows to assist with symptom management, machine learning algorithms to predict emerging CRS in real time, clinical decision support systems to assist with toxicity management, and digital coaching to help maintain wellness. Televisits, which have grown in prominence since the novel coronavirus pandemic, will continue to play a key role in the monitoring and management of CAR-T-related toxicities as well. Limitations of these strategies include the need to ensure care equity and stakeholder buy-in, both operationally and financially. Nevertheless, once developed and validated, the next-generation implementation of CAR-T therapy using these digital tools may improve both its safety and accessibility.

Exploring gender differences among couples with unexplained recurrent pregnancy loss regarding preferences for supportive care

BackgroundInternational guidelines recommend to offer supportive care during a next pregnancy to couples affected by recurrent pregnancy loss (RPL). In previous research, several options for supportive care have been identified and women’s preferences have been quantified. Although it is known that RPL impacts the mental health of both partners, male preferences for supportive care have hardly been explored.MethodsA cross-sectional study was conducted in couples who visited a specialized RPL clinic in the Netherlands between November 2018 and December 2019. Both members of the couples received a questionnaire that quantified their preferences for supportive care in a next pregnancy and they were asked to complete this independently from each other. Preferences for each supportive care option were analysed on a group level (by gender) and on a couple level, by comparing preferences of both partners.ResultsNinety-two questionnaires (completed by 46 couples) were analysed. The overall need for supportive care indicated on a scale from 1 to 10 was 6.8 for men and 7.9 for women (P = 0.002). Both genders preferred to regularly see the same doctor with knowledge of their obstetric history, to make a plan for the first trimester and to have frequent ultrasound examinations. A lower proportion of men preferred a doctor that shows understanding (80% of men vs. 100% of women, P = 0.004) and a doctor that informs on wellbeing (72% vs. 100%, P = ≤0.000). Fewer men preferred support from friends (48% vs. 74%, P = 0.017). Thirty-seven percent of men requested more involvement of the male partner at the outpatient clinic, compared to 70% of women (P = 0.007). In 28% of couples, partners had opposing preferences regarding peer support.ConclusionsWhile both women and men affected by RPL are in need of supportive care, their preferences may differ. Current supportive care services may not entirely address the needs of men. Health care professionals should focus on both partners and development of novel supportive care programs with specific attention for men should be considered.

Efficacy and Tolerability of Gemcitabine-Based Chemotherapy in Relapsed/Refractory Lymphoma Patients Not Eligible for Stem Cell Transplant

Introduction:Gemcitabine, Dexamethasone, and Cisplatin or Carboplatin (GDP/GDCarboP) regimen has comparable efficacy to other salvage therapy in relapsed/refractory (R/R) aggressive lymphoma with successful stem cell mobilisation and bridge to autologous stem cell transplant (ASCT)(Crump et al. 2004). However, half of the patients will not be eligible for ASCT due to inadequate treatment response or co-morbidities. To date, there is little data on the efficacy of Gemcitabine-based salvage regimen in transplant-ineligible patients. Here, we present the real-life data on the outcome of transplant-ineligible patients with R/R NHL and HL treated with salvage GDP/GDCarboP in our centre.Methods:We performed a retrospective analysis of patients ≥ 18 years old who had received at least 1 cycle of GDP/GDcarboP with or without Rituximab as second-line or more salvage therapy for R/R non-Hodgkin lymphoma (NHL) and Hodgkin lymphoma (HL) treated between January 2016 to December 2020, with follow-up until 30 June 2021. The median follow-up is 25 months. Patients who subsequently underwent autologous or allogeneic SCT were excluded. Event-free survival (EFS) is defined as time from first dose of GDP/GDCarboP treatment to change of therapy, disease progression or death. Overall survival (OS) is defined as time of first dose of treatment to death from any cause. Duration of response (DoR) is time from the achievement of partial response (PR) or better to disease progression (DP) or death. Rituximab was given for CD20-positive B cell lymphoma patients who had Rituximab treatment-free interval of 12-months or more. Pegfilgrastim was given routinely to all patients on Day 4.Results:We identified 33 patients: 61% (n=20) high-grade B-cell lymphoma (HGBCL), 15% (n=5) follicular lymphoma (FL), 18% (n=6) peripheral T-cell lymphoma (PTCL) and 6% (n=2) HL. Majority (64%) of the patients were male. At the start of this treatment, the median age was 71 years (y) (range, 32-84 y), with 64% above 70 y. The median Charlson Comorbidity Index score was 5, with 82% having a score of ≥5. The median prior line of treatment was 2. Eighty-five percent had stage III/IV disease at the time of disease relapse.The overall response rate was 33% (n=11), comprising PR rate of 18% (n=6) and CR rate of 15% (n=5). The response rates amongst the different lymphoma subtypes were 35% (7/20) HGBCL, 20% (1/5) FL, 17% (1/6) PTCL and 100% (2/2) HL. The median DoR was 27 months (Figure 1). Of those who responded, 3 had disease progression within the year, and 1 died of non-lymphoma cause 27 months after treatment completion. There were 7 deaths (21%) during treatment - 4 from DP, 2 from treatment complications (TC) and 1 from an uncertain cause. Of the remainder, 2 patients (6%) achieved stable disease while 7 (21%) had DP. Seven patients (21%) had subsequent change of therapy due to inadequate response. The overall median EFS was 4.0 months (Figure 2), and the median OS was 18 months (Figure 3). Disease-associated mortality was 42%, whereas treatment-associated mortality was 9%. Dose reduction, dose omission and treatment delay occurred in 55% of patients. During treatment, 73% of patients required red cells or platelets transfusion, while 70% had at least one hospital admission for TC or DP.Conclusion:Our real-world data showed that GDP/GDCarboP provides meaningful efficacy and response durability in a third of these difficult-to-treat patients with median 2 prior lines of treatment and who were ineligible for SCT. More than half of these patients had required dose modification, blood transfusion, and hospital admission, indicating the need for good supportive care and close follow-up during treatment, even though this is an outpatient regimen. [Display omitted] DisclosuresChan: AbbVie: Membership on an entity's Board of Directors or advisory committees; Eusa: Membership on an entity's Board of Directors or advisory committees; GSK: Membership on an entity's Board of Directors or advisory committees; Janssen: Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Amgen: Other: Travel, Accommodations, Expenses; Celgene: Other: Travel, Accommodations, Expenses; Roche: Speakers Bureau.

Stress and Supportive Care Needs of Millennial Caregivers: A Qualitative Analysis.

Millennial caregivers, born between 1981 and 1996, are an understudied caregiver group. They experience stress-related consequences of caregiving and are unique in their developmental stage and generational norms. The purpose of this study was to understand the context of caregiving and stressors for these caregivers. In total, 42 caregivers were recruited through Research Match and social media platforms. Caregivers completed online surveys with open-ended response questions and 15 caregivers completed semistructured interviews. Data were analyzed deductively and inductively using the Stress Process Model as a framework. Millennial caregivers described uncertainty and disruption as overarching experiences. Stressors related to balancing caregiving, work, and family responsibilities were most prominent. Caregivers reported needing support from friends/family, health care team members, community, and work/governmental policy. Mental health treatment was identified as most helpful for managing stress. Millennial caregivers have distinctive contexts that impact their caregiving needs. Caregiving interventions must take these needs into consideration.

Acute Promyelocytic Leukemia: Simplifying Treatment in a Resource Poor Setting

Introduction: Acute promyelocytic leukemia (APL) is a distinct leukemia which can be treated with differentiating agents alone.Treatment without chemotherapy decreases the cost of treatment and the need for supportive care. Here we present analysis of APL patients treated with arsenic trioxide (ATO)-all trans retinoic acid (ATRA) without chemotherapy in our hospital.Patients and Methods: Forty three patients with newly diagnosed APL were treated with arsenic trioxide(ATO ) and All trans retinoic acid (ATRA) during induction treatment. For consolidation ATRA 45 mg /m2 for two weeks every four weeks was administered for twenty eight weeks. ATO was administered for four cycles, with a cycle length of eight weeks. The drug was administered at 0.15 mg/kg/d for five days per week for four weeks during each cycle.Patients were followed up with once in three month hemogram and once in six month reverse-transcriptase polymerase chain reaction (RT-PCR) for two years and yearly thereafter. Results: The morphologic complete remission (CR) rate was 86.04%.The most common cause of remission failure was early death due to bleeding. None of the low risk patients died during induction therapy. The most important prognostic factor for early mortality was a high white blood cell (WBC) count at presentation. The median overall survival (OS) has not been reached.The two year OS was 83.4% and the three year OS was 74.8%.The estimated five year survival was 74.8%. At a median follow up of 42.6 months the estimated five year survival in the low-intermediate risk group was 93.3% and 59.1% in the high risk group Conclusion: ATO –ATRA can be considered as a treatment option for frontline treatment of all risk APL patients in resource poor settings.The results can be better with better supportive care to prevent early mortality and by salvaging patients who relapse.

Curing the Curable: Managing Low-Risk Acute Lymphoblastic Leukemia in Resource Limited Countries.

Although childhood acute lymphoblastic leukemia (ALL) is curable, global disparities in treatment outcomes remain. To reduce these global disparities in low-middle income countries (LMIC), a paradigm shift is needed: start with curing low-risk ALL. Low-risk ALL, which accounts for >50% of patients, can be cured with low-toxicity therapies already defined by collaborative studies. We reviewed the components of these low-toxicity regimens in recent clinical trials for low-risk ALL and suggest how they can be adopted in LMIC. In treating childhood ALL, the key is risk stratification, which can be resource stratified. NCI standard-risk criteria (age 1–10 years, WBC < 50,000/uL) is simple yet highly effective. Other favorable features such as ETV6-RUNX1, hyperdiploidy, early peripheral blood and bone marrow responses, and simplified flow MRD at the end of induction can be added depending on resources. With limited supportive care in LMIC, more critical than relapse is treatment-related morbidity and mortality. Less intensive induction allows early marrow recovery, reducing the need for intensive supportive care. Other key elements in low-toxicity protocol designs include: induction steroid type; high-dose versus low-dose escalating methotrexate; judicious use of anthracyclines; and steroid pulses during maintenance. In summary, the first effective step in curing ALL in LMIC is to focus on curing low-risk ALL with less intensive therapy and less toxicity.

Development and Psychometric Testing of the Supportive Care Needs Scale for Patients with Tuberculosis (SCN-TB).

PurposePatients affected by tuberculosis have diverse unmet supportive care needs (SCN) that may seriously affect their treatment adherence. Accurately assessing patients’ SCN is important for providing efficient patient-centred care, but few instruments are suitable for use in clinical practice. Therefore, the purpose of this study was to develop an SCN scale for patients with tuberculosis (SCN-TB) and to evaluate its psychometrical properties.Patients and MethodsBased on the SCN framework, the SCN-TB was designed via a literature review, Delphi consultation and pilot study. Then, 550 patients from four tuberculosis specialist hospitals in Shaanxi Province were enrolled by convenience sampling to further test the validity and reliability of the SCN-TB.ResultsA total of 518 patients completed the survey. The final scale encompasses 25 items in five domains: physical, practical, psycho-emotional, social, and informational. The content validity for the scale was 0.93, with that for each item ranging from 0.80 to 1.00. Five factors that explained 80.38% of the variance were identified in exploratory factor analysis. A five-factor model was then confirmed with confirmatory factor analysis using maximum likelihood estimation with bootstrapping. The model fit indices were χ2/df=1.062 (Bollen-Stine χ2=281.382, df=265, p<0.001), CFI=0.997, RMSEA=0.016, SRMR=0.053, NFI=0.951, and GFI=0.929. All factors had acceptable convergent and discriminant validity. The Cronbach’s α, split-half, and test-retest reliability coefficients of the scale were 0.884, 0.883, and 0.854, respectively.ConclusionThe SCN-TB is a valid and reliable theory based tool for assessing the needs of patients with tuberculosis and can be applied in both clinical practice and research.

Describing Unmet Supportive Care Needs among Young Adults with Cancer (25-39 Years) and the Relationship with Health-Related Quality of Life, Psychological Distress, and Illness Cognitions.

Few studies describe supportive care needs among young adults (YAs) with cancer ages 25 to 39 using validated questionnaires. Previous findings identified the need for psychological and information support and suggest that gender, age, psychological distress, and coping may be associated with greater need for this support. To substantiate these findings, this study aimed to (1) describe the supportive care needs of YAs in each domain of the Supportive Care Needs Survey and (2) explore the relationship between unmet supportive care needs and clinical and demographic factors, health-related quality of life, psychological distress, illness cognitions, and service needs using latent class analysis. Clinical teams from six hospitals in England invited eligible patients to a cross-sectional survey by post. A total of 317 participants completed the survey online or on paper. YAs expressed the most need in the psychological and sexuality domains. Using latent class analysis, we identified three classes of YAs based on level of supportive care need: no need (53.3%), low need (28.3%), and moderate need (18.4%). In each class, median domain scores in each domain were similar. Low and moderate need classes were associated with worse health-related quality of life and greater helplessness. Unmet service needs were associated with the moderate-need class only. Patients with unmet supportive care needs should be offered holistic care across supportive care domains.

Effect of an Oncology Nurse–Led Primary Palliative Care Intervention on Patients With Advanced Cancer

Guidelines recommend early specialty palliative care for all patients with advanced cancer, but most patients lack access to such services. To assess the effect of CONNECT (Care Management by Oncology Nurses to Address Supportive Care Needs), a primary palliative care intervention delivered by oncology nurses, on patient outcomes. This cluster randomized clinical trial of the CONNECT intervention vs standard care was conducted from July 25, 2016, to October 6, 2020. Participants were adult patients with metastatic solid tumors who were undergoing oncological care and for whom an oncologist would agree with the statement "would not be surprised if the patient died in the next year." The trial was conducted at 17 community oncology practices in western Pennsylvania. Data analyses adhered to the intention-to-treat principle. The CONNECT intervention included 3 monthly visits with an existing infusion room nurse who was trained to address symptoms, provide emotional support, engage in advance care planning, and coordinate care. The primary outcome was quality of life. At baseline and 3 months, participants completed assessments of quality of life (Functional Assessment of Chronic Illness Therapy-Palliative care: score range, 0-184, with higher scores indicating better quality of life), symptom burden (Edmonton Symptom Assessment Scale: score range, 0-90, with higher scores indicating greater symptom burden), and mood symptoms (Hospital Anxiety and Depression Scale [HADS]: score range, 0-21, with higher scores indicating substantial anxiety and depression). Linear mixed-effects models were used to estimate adjusted mean differences in 3-month outcomes. Preplanned, intensity-adjusted analyses were conducted. A total of 672 patients were enrolled (mean [SD] age, 69.3 [10.2] years; 360 women [53.6%]). The mean (SD) number of CONNECT visits completed was 2.2 (1.0). At 3 months, no difference in mean (SD) quality-of-life score was found between the CONNECT and standard care groups (130.7 [28.2] vs 134.1 [28.1]; adjusted mean difference, 1.20; 95% CI, -2.75 to 5.15; P = .55). Similarly, there was no difference between groups in 3-month mean (SD) symptom burden (23.2 [16.6] vs 24.0 [16.1]; adjusted mean difference, -2.64; 95% CI, -5.85 to 0.58; P = .11) or mood symptoms (HADS depression subscale score: 5.1 [3.4] vs 4.8 [3.7], adjusted mean difference, -0.08 [95% CI, -0.71 to 0.57], P = .82; HADS anxiety subscale score: 5.7 [3.9] vs 5.4 [4.2], adjusted mean difference, -0.31 [95% CI, -0.96 to 0.33], P = .34). Intensity-adjusted analyses revealed a larger estimated treatment effect for patients who received a full dose (3 visits) of the CONNECT intervention. This cluster randomized clinical trial found that a primary palliative care intervention that was delivered by oncology nurses did not improve patient-reported outcomes at 3 months. Primary palliative care interventions with a higher dose intensity may be beneficial for most patients with advanced cancer who lack access to palliative care specialists. ClinicalTrials.gov Identifier: NCT02712229.

Unmet Supportive Care Needs of Jordanian Patients with Colorectal Cancer: A Cross-Sectional Survey

Objective:Colorectal cancer (CRC) is ranked the second most common cancer diagnosed in both men and women in Jordan. This paper aims to explore the unmet supportive care needs (USCNs), and their predictors among Jordanian survivors with CRC.Methods:A cross-sectional descriptive correlational research design with a convenience sample of 180 patients with CRC was conducted. Participants completed the Supportive Care Needs Survey-Short Form 34.Results:Jordanian patients with CRC reported their highest perceived level of need in the information and psychological domains. Multiple linear regression revealed that income and the number of chemotherapy sessions were significant predictors in the physical and daily living domains. Age, type of surgical treatment, and type of clinical setting were significant predictors of USCN in the psychological, patient care and support, and the health system and information domains.Conclusions:The health-care systems should work to meet all the supportive care needs for patients with CRC, particularly the informational and psychological needs domains where patients express unmet needs. Special care should be given according to age, type of surgery, and the doses of chemotherapy received. This study further confirms a disparity in the care and support provided to Jordanian cancer patients with different health-care settings in the country.

Unmet supportive care needs, anxiety and depression in haematology patients during watch-and-wait.

There is growing evidence and awareness of the psychological impact of watch-and-wait in patients with indolent haematological malignancy. However, the need for supportive care is unknown. The aims of this study were to investigate prevalence of unmet needs, their psychological associates, and prevalence of anxiety and depressive symptomatology. Adult patients with indolent haematological malignancy, during watch-and-wait (n=122) were included in this cross-sectional single-centre study. Participants filled out questionnaires on anxiety (Generalised Anxiety Disorder), depression (Patient Health Questionnaire), coping (Acceptance and Action Questionnaire II), distress (distress thermometer), disease-specific quality of life (The European Organisation for Research and Treatment of Cancer quality of life questionnaire) and supportive care needs (Supportive care needs survey - Dutch short version). Multiple linear regression analyses were performed to identify patient-factors associated with unmet needs. The prevalence of anxiety and depressive symptomatology were both 7.3%. Unmet needs were reported by 35% (n=43) of patients. After controlling for covariates, higher levels of distress (β=0.23, p=0.05), depression (β=0.41, p=0.001), poorer coping (β=0.35, p=0.002) and younger age (β=-0.16, p=0.05) were independently associated with more supportive care needs. The highest unmet needs were reported in domain health system, information& patient support (mean=23.6±23.0) and psychological domain (mean=18.7±21.8). One third of indolent haematology patients during watch-and-wait report unmet supportive care needs. Screening for unmet needs and design of interventions is required. A joint approach focused on psychological care, especially on improving psychological flexibility, should be combined with promoting accessibility to health-services and optimising disease education.