Supportive Care Services Research Articles

Data-informed stepped care to improve youth engagement in HIV care in Kenya: a protocol for a cluster randomised trial of a health service intervention

IntroductionAdolescents and youth living with HIV (AYLHIV) have lower retention in care, adherence to treatment, and viral suppression compared with adults. Stepped care is a process by which clients are...

Screening for supportive care services in the neuro-oncology patient: A quality improvement project.

355 Background: On average, 80 to 85% of patients diagnosed with brain tumors qualify for supportive care under the American Society of Clinical Oncology (ASCO) recommendations. The National Comprehensive Cancer Network (NCCN) recommends routine screening, yet in our experience only 39% are screened in-clinic and 8.7% qualifying are referred. Evidence within the literature suggests consistent patient symptom screening and reflexive supportive care referral leads to improved quality of life and treatment plan adherence, and reduced symptom burden, healthcare costs, and less aggressive end-of-life care. This QI/IS project sought to improve quality of life through increased symptom screening via the Edmonton Symptom Assessment Scale (ESAS) and initiation of supportive care referral in Neuro-Oncology patients. Methods: Institutional Review Board (IRB) appraisal deemed this project non-regulatory research. A retrospective chart review assessed pre-implementation consistency of patients screened using the ESAS tool, the number indicating symptom burden and supportive care qualification, and if referral was placed. The Plan-Do-Study-Act (PDSA) Framework guided implementation and process evaluation. Interventions focused on improving ESAS use to identify patients who would benefit from supportive services and decreasing barriers to supportive care such as supportive care misinformation, screening burden, and documentation. From October 2021 to March 2022, data collection included the patient demographics ethnicity, age, diagnosis, and encounter date, as well as patient ESAS scores and supportive care referrals placed. Results: Over a five-month implementation period, 357 ESAS symptom burden tools were completed and documented out of 378 patient encounters in the neuro-oncology outpatient clinic. Clinic ESAS completion rates increased from 39.3% to 94.4%. Symptom burden qualifying for supportive care referral improved in 18% (N = 66), down from 31.2% (N = 102) of patients. Of patients qualifying, referrals increased from 4.9% (N = 5) to 10.7% (N = 7). Conclusions: Consistent use of a patient screening process led to an increase in the number of identified patients with significant symptom burden and referral for supportive care services, meeting all project goals. Initially, qualified rates increased with improved screening processes and clinic education, then steadily decreased to indicate better symptom control. This suggests a process capable of meeting the screening needs of oncology patients and minimal resource needs to maintain long-term sustainability. Future projects aimed at supportive care access and resource availability are recommended.[Table: see text]

Stakeholder evaluation of a supportive care needs assessment tool for adolescent and young adult (AYA) cancer survivors.

224 Background: The survivorship needs of Adolescents and Young Adults (AYA) with cancer are complex and differ from other age groups. Evidence suggests that AYA cancer survivors are unaware of and underutilize supportive care services both during and after treatment. Recently, the Needs Assessment & Service Bridge (NA-SB) tool was developed to screen AYAs’ survivorship needs and facilitate delivery of appropriate services. We engaged a stakeholder group of YA cancer survivors from the Midwest United States to provide feedback regarding NA-SB content and administration. Methods: We used a descriptive focus group design. We recruited 10 YA cancer survivors, aged 20-38, of diverse sex, race, rural/urban residence, and on/off active therapy. We held five 90-minute virtual stakeholder group meetings. Before the first meeting, stakeholders reviewed the 57 NA-SB items. The PI and a trained facilitator co-led the meetings, asking participants about the utility of the NA-SB, item content, response options, and administration. Meetings were recorded and transcripts were analyzed deductively, organizing comments by the 9 NA-SB domains. Results: Stakeholders endorsed all original NA-SB items, modified 4 items, and identified 18 new items (Table). Stakeholders recommended that YA patients initially complete the NA-SB in-person shortly after treatment begins, and again electronically at clinical milestones. They suggested using a screening question for each domain, allowing patients to skip items not relevant for them. Conclusions: The stakeholder-engaged process resulted in a modified NA-SB and recommendations for administration that reflect the needs of our Midwestern YA cancer survivor population. Prior to implementation, we will integrate recommendations from clinician experts and align available resources with NA-SB domains.[Table: see text]

SIOG2022-0057 - Optimization of the Edmonton Symptom Assessment Scale (ESAS) Screening Tool for Supportive Care Services in the Geriatric Neuro-Oncology Patient: A Quality Improvement Project

SIOG2022-0057 - Optimization of the Edmonton Symptom Assessment Scale (ESAS) Screening Tool for Supportive Care Services in the Geriatric Neuro-Oncology Patient: A Quality Improvement Project

Differences in the utilization of palliative care support services among patients with metastatic solid tumor cancer in a community oncology setting: A retrospective review.

82 Background: Palliative care has been underutilized in the setting of advanced cancer despite its established benefit in improving the quality of life in cancer patients. Few studies have evaluated socioeconomic disparities in receiving palliative care in the outpatient oncology setting. We aimed to evaluate for disparities in utilization of palliative care among patients with metastatic solid tumor malignancies at Tennessee Oncology, a large outpatient community oncology practice with an established palliative care program. Methods: We completed a retrospective review of medical records of 1513 patients that were seen in Tennessee Oncology clinics from 12/2020 to 12/2021. We compared the baseline characteristics of patients with metastatic solid tumor malignancies who did and did not receive palliative care. Chi-square and two-sample t-tests were used for data analysis with the 5% significance level using R statistical software. Results: Male patients utilized palliative care less often than female patients (17% versus 24% for females, p =.0002; 95% CI,.05-1.0). Of payer types, Medicare had the least palliative care utilization (14%) compared to commercial (25%) and other payers (23%). Utilization also varied by cancer type, with melanoma (9%), lung cancer (15%) and renal cancer (21%) being least likely to receive palliative care (p <.00005; 95% CI,.19-1.0). We did examine racial differences in palliative care utilization, but those did not reach statistical significance. Conclusions: There are multiple disparities in the utilization of on-site palliative care support services among patients with metastatic solid tumor cancer in this outpatient community oncology setting. Further research is needed to gain insight into why this is, including an in-depth analysis of both patient and provider utilization/referral practices.[Table: see text]

L’infirmière en pratique avancée au sein d’un service de soins de support : le chainon manquant ?

Cancer has become a chronic disease thanks to therapeutic evolutions and justifies the early integration of supportive care in the management. The Advanced Practice Nurse (APN) was created to respond to the increase in the number of patients followed in the long term. The objective of this study is to identify the place and expected missions of an APN within a multidisciplinary supportive care team. A qualitative study by semi-directed interview using a previously developed interview grid was carried out with 14 health professionals (doctors, nurses and health managers) working in a supportive care service in three Cancer Centres. The role expected by the participants is based on the optimisation of patients' follow-up, the integration of supportive care into the care pathway, the improvement of the relationship with the town, and the development of nursing leadership in the establishment. At the same time, the potential arrival of an APN as a change agent in a supportive care service is a source of fears. The APN seems to be a real link in the institutional organisations facilitating the link between the professionals of the institution and with the professionals of the territory. The identification of the origins of the fears expressed should enable work to be done to facilitate the integration of the APN into specific support care services, particularly for patients in palliative situations.

Development and Application of a Multidrug-Resistant Tuberculosis Case Management System - Yunnan Province, China, 2017-2020.

IntroductionTreatment and case management of multidrug-resistant tuberculosis (MDR-TB) is a significant challenge in tuberculosis (TB) control and prevention. This pilot study aims to apply and test a new electronic information system in order to help bolster case management of MDR-TB.MethodsThe MDR-TB Case Management System (CMS) was developed and piloted in the Yunnan Tuberculosis Clinical Center (TCC) in 2017. Next, 5 sites in Yunnan were randomly selected and sampled as pilots in 2018. The real-time regular follow-up rate (RFUR) was calculated for pilot sites. Loss to follow-up (LTFU) rates of MDR-TB treatment cohorts between pilot and non-pilot sites were compared by a chi-square test. LTFU for MDR-TB treatment cohorts was then assessed by univariate and multivariate binary logistic regression.ResultsThe average regular follow-up rate was 90.7% in TCC and 73.7% in five other pilot sites of Yunnan Province respectively. The average LTFU rate for pilot sites (9.0%) was lower than non-pilot sites (20.6%, P<0.01). The risk of LTFU during MDR-TB treatment reduced 61.7% in CMS pilot cases (adjusted odds ratio: 0.38, 95% confidence interval: 0.23–0.60) compared with non-pilot cases.ConclusionsAs a significant supplement to the Tuberculosis Information Management System, the CMS strengthened the collection, analysis, and utilization of strategic information for MDR-TB cases. The system improved case management by embedding it as a tool of the Comprehensive Supportive Care service model.

Towards defining quality in home care for persons living with dementia.

IntroductionAccelerating rates of dementia worldwide coupled with older adults living longer in the community calls for greater focus on quality home care support services. Few frameworks for quality dementia home care exist though prior findings have found elements considered to be important for “good” home care for people living with dementia. This study aimed to identify core components of a quality home care experience for people with dementia and their caregivers.MethodsAs part of a larger research study, in-depth interviews were conducted with persons living with dementia and caregivers (n = 25) to explore hospital-to-home care transitions. The design used for this study was a qualitative description. We used deductive-inductive thematic analysis, which was informed by previous work in this area. Open codes were mapped to pre-determined themes, and for codes not accommodated by an a piori framework, new themes were developed.FindingsOur findings resulted in 4 overarching themes. Two themes were identified deductively (Availability and Acceptability of Home Care Services) and two inductively (Adaptability and Affordability of Home Care Services). Findings highlight the roles of family—care provider partnerships and responsive support in receiving quality home care, and the cost associated with unmet needs.InterpretationWith an aging population, an increase in home care client acuity, and post-COVID-19 concerns over long-term care, more attention is needed to improve the quality of home care. The demand for these services will continue to increase particularly for those living with dementia and their families. The findings of availability, acceptability, adaptability, and affordability as core to quality care can help lay the groundwork for a home care framework for persons living with dementia and their caregivers. Future research could benefit from comparative analyses to evaluate the applicability of the findings to non-dementia home care service users and caregivers.

A Patient Navigation Model to Improve Complex Wound Care Outcomes.

To create a blended format model to navigate interprofessional team assessments of patients with complex wounds during COVID-19 as a quality improvement process. During clinical assessments, patients were interviewed in their homes with representation from their circle of care and primary nurse on site linked to a live virtual interprofessional blended remote team model (wound care nurse specialist, advanced wound care doctor). Eligible patients had completed a wound care clinical pathway without wound closure. Palliative patients with complex wounds and patients without precise/accurate diagnoses were also included. This process addressed the components of Wound Bed Preparation 2021: manage the cause, address patient-centered concerns, determine the ability to heal, optimize local wound care, and evaluate outcomes on an ongoing basis. Since April 2020, 48 patients were referred to the Home and Community Care Support Services patient navigation interprofessional team. Patients' home-care services were initiated between 2012 and 2021. The team provided closure in 29% of patients and the wound surface area reduced in 66%. Pain was reduced in 73% of patients and appropriate infection management was implemented in 79%. In addition, nursing visits were reduced by 73% and there was a 77% decrease in supply usage. This project validated the Wound Bed Preparation Paradigm 2021 as a process for assessing patients with complex wounds using a blended virtual and home-based assessment. Patient navigation with this blended model benefited patients and improved healthcare system utilization with projected cost savings.

장애인 보호자 지원 실태 및 요구에 대한 기초 연구

Purpose: This study presented the concept of guardians of the people with disabilities and presented the contents of support by life cycle and support by disability types. The results of this study were meaningful in preparing measures for domestic disabled guardian support policies and services.&#x0D; Method: For the purpose of this study, it was intended to clearly understand the status of support for guardians of the people with disabilities in Korea by examining laws, academic studies, and degree papers related to support for guardians of the people with disabilities by life cycle and disability types.&#x0D; Results: The research results focused on the concept and area of support for guardians of the people with disabilities, understanding of support by life cycle, and support by disability types. In the concept of support for guardians of the people with disabilities, the legal definition of guardians of the people with disabilities, family members as guardians of the people with disabilities, and support areas for guardians of the people with disabilities were examined. In the trend of supporting guardians for the people with disabilities by the life cycle, the request for support for guardians of the people with disabilities required in the life cycle such as infancy, childhood, adolescence, transition period, and adulthood was presented. As for the status of support for guardians of the people with disabilities by disability types and the demand for support, the status of support felt by guardians of the people with disabilities by each disability type such as visual, hearing, physical, developmental, and intermediate redundancy were presented.&#x0D; Conclusion: Direct support for carers of people with disabilities should be focused, and support services for carers of people with disability should be expanded considering the life cycle and disability types of people with disabilities.

Healthcare providers’ perspectives of the supportive care needs of women with advanced breast cancer in Ghana

BackgroundThe study sought to understand the supportive care needs of women with advanced breast cancer from the perspectives of healthcare professionals (HCPs) and key informants of charitable/non-governmental organisations (NGOs), that provide supportive care services to women with advanced breast cancer, in Ghana.MethodsA qualitative descriptive approach was employed via one-to-one semi-structured interviews with 13 HCPs and key informants of charitable/NGOs in Ghana that provide supportive care services to women with advanced breast cancer. The study was underpinned by Bradshaw’s taxonomy of social needs and Fitch’s supportive care framework. The data were analysed using a deductive content analysis approach.ResultsHealthcare providers and key informants perceived that women with advanced breast cancer in Ghana have numerous and complex supportive care needs in key areas that align with Fitch’s supportive care framework, including informational, psychological, emotional, physical, practical, social, sexuality and spiritual needs.ConclusionParticipants perceived that women who have advanced breast cancer in Ghana require ongoing information about their condition, treatments and related effects, as well as spiritual support and guidance particularly due to the fatalistic beliefs they often associate with the condition. Tailored supportive care interventions and services, which address the unique sociocultural circumstances for this cohort, are required. Additional research is needed to explore how multidisciplinary teams can work collaboratively to provide comprehensive support to women in addressing their needs.

Do breast cancer survivors with a recent history of clinical depression report worse experiences with care? Aretrospective cohort study using SEER-CAHPS data.

We examined whether breast cancer survivors' experiences with care differed by a recent history of clinical depression, and whether associations differed by race/ethnicity. Using the Epidemiology and End Results-Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS) dataset, we analyzed records of breast cancer survivors who completed a survey at least 12 months after their cancer diagnosis. We assessed clinical depression 12 months prior to survey completion using Medicare claims. We used separate multivariable logistic regressions to examine the associations between depression and excellent (vs. less than excellent) ratings of experiences with care (i.e., doctor communication, getting needed care, getting care quickly, getting prescription drugs, specialist and overall care). We also assessed interactions of depression by race/ethnicity. All models were adjusted for demographics and cancer prognostic and treatment factors. Of the 2271 survivors, 7.6% were clinically depressed. After adjusting for covariates, survivors with clinical depression had lower odds of reporting excellent ratings of their ability to get needed care, care by their specialist, and overall care, compared to those without depression (AOR=0.58, 95% CI: 0.40-0.84; AOR=0.40, CI: 0.31-0.76; and AOR=0.61, CI: 0.42-0.89, respectively). Among Hispanics, having depression was associated with higher odds of excellent ratings of one's ability to get needed care (AOR: 5.42, 95% CI: 1.02-28.81). No other statistically significant associations by race/ethnicity were found. Breast cancer survivors with depression report poorer patient experiences with care. Further research is needed to understand complexities of ratings of experiences with care among survivors of diverse backgrounds. Survivors with a recent history of clinical depression may benefit from additional supportive care services.

Impact of the coronavirus disease 2019 pandemic on delivery of and models for supportive and palliative care for oncology patients.

Purpose of reviewSupportive and palliative care services have been an important component of the overall COVID-19 pandemic response. However, significant changes in the provision and models of care were needed in order to optimize the care delivered to vulnerable cancer patients. This review discusses the evolution of palliative and supportive care service in response to the pandemic, and highlights remaining challenges.Recent findingsDirect competition for resources, as well as widespread implementation of safety measures resulted in major shifts in the mode of assessment and communication with cancer patients by supportive care teams. Telemedicine/virtual consultation and follow-up visits became an integral strategy, with high uptake and satisfaction amongst patients, families and providers. However, inequities in access to the required technologies were sometimes exposed. Hospice/palliative care unit (PCU) bed occupancy declined markedly because of restrictive visitation policies. Collection of patient-reported outcome (PRO) data was suspended in many cancer centers, with resulting under-recognition of anxiety and depression in ambulatory patients. As in many other areas, disparities in delivery of supportive and palliative care were magnified by the pandemic.SummaryVirtual care platforms have been widely adopted and will continue to be used to include a wider circle of family/friends and care providers in the provision of palliative and supportive care. To facilitate equitable delivery of supportive care within a pandemic, further research and resources are needed to train and support generalists and palliative care providers. Strategies to successfully collect PROs from all patients in a virtual manner must be developed and implemented.

Informal dementia care: The carer's lived experience at the divides between policy and practice.

Support for informal dementia care at a local community level is not working for most carers today. Carers looking after a person with dementia have long lamented the absence of an empowered named support and an effectively actioned care plan. Drawing on literary writing and social research, we argue in this article that these challenges have existed since dementia emerged as a major condition in the West during the 1980s. Based on this historical context, we ask: Why has this issue persisted over the last four decades? How have healthcare politics and policy initiatives responded to these requests? And what can we learn from this for the current, COVID-19 exacerbated crisis of care? This article focuses on the English context, to discuss these ongoing challenges in the light of a series of policy papers, and to ask what is hampering the implementation of such policy initiatives. In England, local authorities are responsible for dementia support. This article focuses on the situation in a county in the Midlands where one of us (AB) has been lobbying local government for over a decade. The discussion contextualises the lived experience of dementia care within the situation exacerbated by the COVID-19 pandemic, ensuing politics of crises and persistent emphasis on cure over care. We find that the absence on two points centrally challenges care: a joined-up approach between health and social care and adequate information on available care support services, accessible through an empowered named contact. To enhance the lived experience of dementia care, consistent provision of individual named support and professional care support, as and when required, should become essential to local implementation of the care policy.

Palliation of heart failure: value-based supportive care

ObjectivesHeart failure (HF) is a prevalent condition associated with poor quality-of-life and high symptom burden. As patients reach ceilings of survival-extending interventions, their priorities may be more readily addressed through...

I don't know what type of arthritis I have: A population-based comparison of people with arthritis who knew their specific type and those who didn't.

ObjectiveTo understand differences between people with arthritis who do not know their type (DK) compared to those reporting osteoarthritis (OA) or inflammatory and autoimmune types of arthritis (IAA), including the receipt of appropriate health care, information, and services.MethodsAnalysis of the Survey on Living with Chronic Disease in Canada–Arthritis Component. Respondents aged ≥20 years with health professional-diagnosed arthritis (n = 4,385) were characterized as reporting DK, OA or IAA. Variables: arthritis characteristics (duration, number and site of joints affected), arthritis impact (current pain and fatigue, difficulty in sleeping and daily activities, impact on life), health (self-rated general and mental health, life stress), arthritis management strategies (seeing health professionals, medication use, assistive devices, receipt of arthritis information, self-management activities). Multinomial logistic and log-Poisson regressions were used, as appropriate, to compare the DK to the OA and IAA groups.ResultsIn this arthritis sample, 44.2% were in the DK group, 38.3% reported OA and 17.5% reported IAA. Those in the DK group were more likely to be younger, have low income, low education, and be of non-white cultural background compared to those with OA. There were no significant differences in arthritis impact, but the DK group was less likely to have received information on, or have used, arthritis management strategies.ConclusionsThe sociodemographic characteristics of the DK group suggest they likely have lower health literacy. They were less likely to have accessed health care and other support services, indicating this is an important group for health education, both for individuals with arthritis and health care providers.

Research on the Relationship between Chinese Elderly Health Status, Social Security, and Depression.

(1) Background: To explore the relationship between health status, social security status, and the occurrence of depression in older adults and provide a basis for mental health care services for the elderly population; (2) Methods: This study used the 2018 China Health and Senior Care Tracking Survey (CHARLS) data to select 8383 older people aged over 60 years old as the research subjects. The two-category Logistic model was used to analyze the research problem; (3) Results: Older adults with depressive tendencies accounted for 34.1% of the total older adults. The incidence of depression among female older adults reached 41.51%. The risk of depression in the elderly population was 40.3% lower in males than in females (OR = 0.597, 95% CI: 0.539–0.662). Self-rated health status, physical disability, and receipt of pensions affected the incidence of depression in older adults (all p < 0.05); (4) Conclusions: Focus on and intervene in the mental status of elderly females and disabled elderly people. Provide mental and economic support and mental health care services to the elderly at the family and social levels. Promote the healthy development of the mental health of the elderly and promote active aging.

"What Matters Most" to Older Adults With Cancer: Advance Care Planning.

Approximately 1 in 3 adults have some type of advance directive. Advance care planning (ACP) is associated with greater use of supportive care services and decreased patient and family stress. Despite this, organizations continue to have difficulty in implementing effective programs for increasing ACP. Increasing knowledge and comfort of the health care team with end-of-life discussions and ACP is essential. Educational efforts should focus on decreasing known barriers to ACP discussions such as discomfort, unclear role, lack of experience, and limited education. Role playing and case discussions taught by geriatric resources nurses can help increase staff knowledge and comfort regarding ACP. Role playing allows staff to think about their own mortality and what will happen in various situations if ACP is not complete. Team members find that once they have completed their own ACP, they are more comfortable discussing ACP with patients and caregivers. Nurses should collaborate with social workers and chaplains for ACP education and discussing what matters most to them. Patients are encouraged to make sure that they provide advance directives to their health care providers. This article shares an interprofessional team approach to improving processes for ACP as a component of "what matters most" to older adults with cancer.

A qualitative exploration of the physical and psychological wellbeing of family carers of veterans in Australia.

Family carers of veterans have a tendency not to seek support for their own wellbeing concerns. Understanding the barriers and enablers that family carers face in attending to their own wellbeing and in their caring role generally, is key to supporting family carers of veterans. This qualitative study sought to explore family carers’ experiences and perceptions of their caring role, using semi-structured interviews. Questions were designed to capture concepts related to the barriers and enablers family carers face in attending to their own wellbeing. Twenty-two family carers participated in interviews. Thematic analysis facilitated the identification of key themes including the impact of the caring role; a perceived lack of recognition or appreciation of the caring role; expressed preferences for support; and consideration of the family unit. Findings suggest a need for accessible and multi-faceted support services for family carers of veterans, that target the drivers of physical and psychological wellbeing.

Supportive care needs of women with advanced breast cancer in Ghana.

Most women with breast cancer in Ghana are initially diagnosed with advanced disease, however, there is limited research about Ghanaian women's experiences of living with advanced breast cancer. The study aimed to understand the perceived (felt) and expressed needs of women with advanced breast cancer. Using a cross-sectional design, this study assessed the supportive care and spiritual needs, as well as the supportive care service use, of women diagnosed with advanced breast cancer (n=176) with the Supportive Care Needs Survey-Long Form, the Spiritual Need Assessment for Patients and the modified Client Service Receipt Inventory. Most participants (96.6%) had financial needs and needs in relation to having access to professional counselling. The most prevalent supportive care needs reported were related to health system issues and information needs (90.3%-96.6%). Compared to older women (51.7%), younger women (48.3%) reported greater psychological (p=0.002) and sexuality needs (p<0.001) and less religious needs (p=0.048). Most participants (92.1%) had at least one spiritual need. Many of the available outpatient services were not accessed by the majority of participants (>63%). The study participants reported high supportive care needs even so, most did not access available relevant services. Study findings indicate that most of the participants were unaware of the health and supportive care services that were available to them or that these services were not easily accessible due to their financial status or geographical location. Targeted interventions are needed to assist the women to address their supportive care, spiritual and service needs.