Understanding the supportive care needs of early-phase cancer clinical trial (CT) participants.

26 Background: Early phase CTs investigate novel therapeutic approaches for patients with cancer, but little is known about the use of supportive care services among participants in early phase CTs. Methods: We conducted a retrospective chart review of consecutive patients enrolled in Phase 1 CTs from 2017-2019, capturing sociodemographics, clinical data, and use of supportive care services from the electronic health record. We calculated the Royal Marsden Hospital (RMH) prognostic score using data at the time of CT trial enrollment based on patients’ lactate dehydrogenase, albumin, and number of sites of metastasis. The RMH score ranges from 0-3, with scores of 2+ indicating a poor prognosis. We explored differences in patient characteristics, supportive care use, and clinical outcomes based on the RMH prognosis score. Results: Among 426 patients treated on Phase 1 CTs during the study period, the median age was 63.0 years (range 20.5-85.2 years), and most were female (56.1%), white race (85.1%), and had metastatic cancer (97.7%). The most common cancer types were gastrointestinal (22.1%), lung (20.0%), and breast (10.6%) cancer. Under half (31.6%) had an RMH score indicating a poor prognosis. Patients with a poor prognosis score had a worse performance status (ECOG ≥1: 80.2% v 58.3%, p < .001) and more prior treatment (3+ prior lines: 49.5% v 35.0%, p = .001) compared to those without a poor prognosis score. Those with a poor prognosis score were more likely to receive palliative care before or during CT participation (40.5% v 27.1%, p = .011). We observed no significant differences in the rates of nutrition (69.1% v 64.0%), social work (62.2% v 63.8%), or physical therapy (64.5% v 61.7%) consults between those with and without a poor prognosis score. We found that those with an RMH score indicating a poor prognosis had a shorter time on trial (median: 49 vs 87 days, p < .001) and worse survival (median: 139 v 379 days, p < .001). Conclusions: Early phase CT participants represent an advanced cancer population with unique supportive care needs, and we identified a group with a particularly poor prognosis for whom earlier intervention with supportive care services may be needed. Our findings highlight the need to prospectively examine these characteristics along with patient-reported outcomes to better understand the distinct supportive care needs of this population and guide the development of targeted interventions.

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Patient utilization of supportive care services identified through the Athena Breast Health Questionnaire System.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.226 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 226-226 ◽

Cited By ~ 1

Author(s):

Emily Claire Wong ◽

Celia Kaplan ◽

Dianne Shumay ◽

Yan Leykin ◽

Laura Van't Veer ◽

...

Keyword(s):

Genetic Counseling ◽

Supportive Care ◽

Care Center ◽

Lifestyle Changes ◽

Supportive Care Needs ◽

Breast Health ◽

Health Questionnaire ◽

Care Needs ◽

Care Services ◽

Patient Reported

226 Background: Psychological wellbeing and lifestyle changes are important factors in long-term health of cancer survivors. As part of the Athena Breast Health Network, the UCSF Breast Care Center (BCC) incorporated an electronic health questionnaire system (HQS) that collects patient-reported data on physical and psychological symptoms, medical conditions, family history, and lifestyle to identify patients’ supportive care needs. Methods: Through a semi-automated process, patients whose HQS responses meet pre-established thresholds are referred to Psycho-Oncology, social work, genetic counseling, and Onco-Fertility. Referrals generated within the HQS are signed and routed by clinicians at the time of a BCC visit. When patients decline appointments with these services, staff members document reasons within the electronic medical record (EMR). A retrospective chart review identified patients who did not receive supportive care services to which they were referred and a qualitative analysis was performed. Results: From 7/1/14-12/31/14, 525 patients completed an HQS and agreed to have their data used for research. The table summarizes referral information. 45 patients referred to Psycho-Oncology did not complete an appointment. Of these, ten did not respond to phone contact to schedule visits. 35 were reached, but declined an appointment. 25 (71.4%) were not ready to make an appointment; 5 (14.3%) cited distance as a primary barrier; 3 (8.6%) were satisfied with the psychological services they were receiving elsewhere; and 2 (5.7%) did not have insurance coverage. Reasons women disregarded referrals for genetic counseling and fertility are being evaluated. Conclusions: HQS can assist in identifying patient supportive care needs, but despite automation of referrals, many patients do not follow through to use supportive care and clinical resources. Timing and resource accessibility may be key. Through analysis of reasons for non-utilization, we hope to better tailor the delivery of supportive care services, when indicated, to better serve patient needs. [Table: see text]

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The impact of the COVID-19 pandemic on patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in an Australian outpatient oncology setting.

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.195 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 195-195

Author(s):

Kate Webber ◽

Olivia Cook ◽

Michelle White ◽

Alastair Kwok ◽

Eva Segelov

Keyword(s):

Supportive Care ◽

Sleep Problems ◽

Short Form ◽

Phase 1 ◽

Assessment System ◽

Supportive Care Needs ◽

Care Needs ◽

Oncology Patients ◽

Patient Reported ◽

The Impact

195 Background: PROMs and PREMs may be useful tools to reflect the impact of the COVID-19 pandemic on cancer patients’ wellbeing and care. This analysis compares baseline self-reported quality of life (QoL), symptoms and supportive care needs between two independent patient groups based on when and how they attended their oncology appointment: 1) in person, prior to the global declaration of the COVID-19 pandemic and; 2) via telehealth, during the pandemic. Methods: Patients were invited to complete a suite of PROMs and PREMs including the EQ-5D-5L, modified Edmonton Symptom Assessment System-Revised (ESAS-R) and the modified Supportive Care Needs Survey Short-Form (SCNS-SF34) on an iPad in the waiting room before each appointment (pre-COVID-19 pandemic phase, December 2019 to March 2020) or online prior to a telehealth appointment (COVID-19 pandemic phase, October 2020 to April 2021). Descriptive statistics were reported for clinical and demographic factors and the PROMs and PREMs. Baseline scores from pre-COVID-19 and COVID-19 cohorts were compared using t-tests and chi-square tests. Results: In the pre-COVID-19 phase, 100 patients (99 females, 60.7 years old) participated compared with 129 patients (128 females, 59.7 years old) in the COVID-19 phase. Primary cancer diagnoses were breast (pre-COVID-19 68%, COVID-19 71%), gynaecological (pre-COVID-19 31%, COVID-19 37%) and lung (pre-COVID-19 1%) cancers. Mean age, gender, relationship status, language spoken, cancer diagnoses, and staging were similar, all p > 0.05. Median self-rated health (EQ-VAS score) was also similar between the pre-COVID-19 phase (74, IQR 33) and the COVID-19 phase (75, IQR 34), p = 0.51. Median ESAS-R swelling/lymphoedema score was higher for the COVID-19 phase (1, IQR 3) than the pre-COVID-19 phase (0, IQR 3), p = 0.03. Median SCNS standardised psychological domain score was lower for the COVID-19 phase (35, IQR 40) compared with the pre-COVID-19 phase (45, IQR 42), p = 0.03. No other significant differences in symptoms or unmet needs were noted (all p > 0.05). The top three symptoms concerns (ESAS-R score ≥7) were: 1) tiredness (pre-COVID-19 33%, COVID-19 22.7%); 2) sleep problems (pre-COVID-19 24.5%, COVID-19 21.9%); 3) drowsiness (pre-COVID-19 21.2%) and concentration and memory (COVID-19 19.5%). Conclusions: Despite the COVID-19 pandemic, these data reflect the symptoms and concerns impacting on the QoL among Australian oncology patients have remained largely stable. Although Australian COVID-19 case numbers have remained low, PROMs and PREMs are crucial tools for continuing to support oncology patients with QoL and supportive needs in the pandemic era. Clinical trial information: ACTRN12619001470189.

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TACL'ing supportive care needs in pediatric early phase clinical trials for acute leukemia: A report from the therapeutic advances in childhood leukemia & lymphoma (TACL) consortium supportive care committee

Pediatric Hematology and Oncology ◽

10.1080/08880018.2017.1395936 ◽

2017 ◽

Vol 34 (6-7) ◽

pp. 409-417

Author(s):

E Orgel ◽

J J Auletta

Keyword(s):

Clinical Trials ◽

Acute Leukemia ◽

Supportive Care ◽

Early Phase ◽

Childhood Leukemia ◽

Supportive Care Needs ◽

Care Needs ◽

Early Phase Clinical Trials

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Psychosocial Distress of Patients with Psoriasis: Protocol for an Assessment of Care Needs and the Development of a Supportive Intervention (Preprint)

10.2196/preprints.8490 ◽

2017 ◽

Author(s):

Jördis Maria Zill ◽

Jörg Dirmaier ◽

Matthias Augustin ◽

Sarah Dwinger ◽

Eva Christalle ◽

...

Keyword(s):

Systematic Review ◽

Supportive Care ◽

Psychosocial Support ◽

Meta Analysis ◽

Phase 1 ◽

Psychosocial Distress ◽

Supportive Care Needs ◽

Phase 2 ◽

Care Needs ◽

Supportive Intervention

BACKGROUND Psoriasis is a chronic inflammatory disease that is often associated with a number of somatic and mental comorbidity. Patients with psoriasis show an increased risk of depression and (social) anxiety. OBJECTIVE The aims of this study are 1) to explore the psychosocial distress of patients with psoriasis and to assess their care needs; and 2) to develop a supportive intervention based on the prior results. METHODS A multi-stage design with four phases combining quantitative and qualitative methodology will be used and conducted in two centers. 1) A scoping review and focus groups will be used to design a questionnaire to assess the psychosocial distress and care needs of the patients. 2) The questionnaire developed in phase 1 will be used in a cross-sectional survey to assess the extent of psychosocial distress and supportive care needs in 400 patients with psoriasis. 3) A systematic review and meta-analysis will be conducted to identify psychosocial and psychoeducational interventions for patients with psoriasis and to describe their effectiveness. 4) Based on the results of the phases 2 and 3 a manualized supportive intervention will be developed and the feasibility and acceptance of the intervention will be assessed. RESULTS Currently, phase 1 of the project has been completed and the recruitment for phase 2 has been started. The systematic review and meta-analysis of phase 3 are conducted simultaneously to phase 2 and results are expected soon. Phase 4 has not been started yet. CONCLUSIONS The expected results of this study will show the extent of psychosocial distress of patients with psoriasis in Germany and supplement previous research with findings about the supportive care needs of this patient group. Moreover, the developed intervention will help to address the psychosocial support needs of patients with psoriasis. Research shows that psychosocial support is strongly needed.

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Patient-reported symptom burden and supportive care needs at cancer diagnosis: a retrospective cohort study

Supportive Care in Cancer ◽

10.1007/s00520-020-05415-y ◽

2020 ◽

Vol 28 (12) ◽

pp. 5889-5899 ◽

Cited By ~ 2

Author(s):

Colleen A. Cuthbert ◽

Devon J. Boyne ◽

Xu Yuan ◽

Brenda R. Hemmelgarn ◽

Winson Y. Cheung

Keyword(s):

Cohort Study ◽

Supportive Care ◽

Cancer Diagnosis ◽

Retrospective Cohort Study ◽

Retrospective Cohort ◽

Symptom Burden ◽

Supportive Care Needs ◽

Care Needs ◽

Patient Reported

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Using a patient-reported outcomes tool as a gateway to identifying patients who would benefit from palliative care.

Journal of Clinical Oncology ◽

10.1200/jco.2018.36.30_suppl.306 ◽

2018 ◽

Vol 36 (30_suppl) ◽

pp. 306-306

Author(s):

Kathleen Dunn ◽

Morgan Hannaford ◽

Scott Hartman ◽

Diane Denny, DBA

Keyword(s):

Palliative Care ◽

Supportive Care ◽

Assessment Tool ◽

Disease Stage ◽

Care Needs ◽

National Network ◽

Care Services ◽

Wide Range ◽

Patient Reported ◽

Self Assessments

306 Background: Palliative care provides a wide range of supportive care services that aim to enhance the patient’s quality of life, reduce complications, address supportive care needs earlier, and avoid unnecessary resource consumption. A national network of five hospitals providing comprehensive cancer care noted barriers in identification of patients that may benefit from these services. Technology and objective criteria can circumvent human barriers such as, prognostic uncertainty and psychology of decision making. Referred to as the SIT (symptom inventory tool) process, an externally validated assessment tool that captures patients’ perceived symptom burden from baseline and every 21 days was used as means of identifying patients who might benefit from referral. Methods: A three-month pilot was initiated at two centers using a report run on a weekly basis, generated from the SIT process utilizing the following criteria: six or > symptoms from 27 increasing in severity by two points or > since their last assessment. This subset of patients identified by this filter was reviewed by the palliative care nurse to determine if they meet the following criteria: any stage with metastatic disease, stage 3 not in remission, and stage 4 not already enrolled in palliative care. Results: During the pilot timeframe, 1,127 SIT self-assessments were completed by patients at Site 1 with 168 patients flagged for review by the palliative care RN. Of these 168 patients 75 (or 44.6%) met the criteria for palliative care services. At Site 2, 802 self-assessments were completed, with 82 identified for review of which 46 (or 56.1%) met the criteria. Conclusions: Patients with overwhelming symptoms were identified for intervention that might otherwise have been missed by relying solely on referral. This patient population resulted in a request for practice integration across centers recognizing the clinical and financial benefits outlined below. [Table: see text]

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Identifying early-phase clinical trial (EP-CT) participants at risk for poor outcomes.

Journal of Clinical Oncology ◽

10.1200/jco.2020.39.28_suppl.301 ◽

2021 ◽

Vol 39 (28_suppl) ◽

pp. 301-301

Author(s):

Debra Lundquist ◽

Rachel Jimenez ◽

Megan Healy ◽

Andrew Johnson ◽

Sienna Durbin ◽

...

Keyword(s):

At Risk ◽

Palliative Care ◽

Social Work ◽

Supportive Care ◽

Clinical Outcomes ◽

Poor Prognosis ◽

Metastatic Cancer ◽

Care Services ◽

Poor Outcomes ◽

Prognosis Score

301 Background: EP-CTs investigate novel treatment options, with recent advances in personalized therapy leading to increased response rates, decreased toxicity, and improved survival. Identifying EP-CT participants at risk for poor outcomes could help identify those who may benefit most from targeted supportive care efforts. Methods: We retrospectively reviewed the electronic health records of consecutive patients enrolled in EP-CTs from 2017-2019 to obtain baseline characteristics (demographics and clinical factors), clinical outcomes (survival, time on trial, completion of dose-limiting toxicity [DLT] period, emergency room [ER] visits, hospitalizations, and hospice use), and receipt of supportive care services before/during trial (palliative care, social work, physical therapy [PT], and nutrition). We calculated the validated Royal Marsden Hospital (RMH) prognosis score using data at the time of EP-CT enrollment based on patients’ lactate dehydrogenase, serum albumin, and number of sites of metastasis. RMH scores range from 0-3, with scores of 2+ indicating a poor prognosis. We examined differences in patient characteristics, clinical outcomes, and receipt of supportive care services based on the RMH prognosis score. Results: Among 350 patients (median age = 63.2 years [range 23.0-84.3]; 57.1% female, 98.0% metastatic cancer), the most common cancer types were lung (23.4%), gastrointestinal (20.3%), and breast (12.0%). Nearly one-third (31.7%) had an RMH score indicating a poor prognosis. Patients with a poor prognosis RMH score had a worse performance status (ECOG ≥1: 80.2% vs 58.1%, p <.001) and more prior treatment (3+ prior lines: 48.6% vs 34.7%, p =.001) than those with a better prognosis score. Those with a poor prognosis RMH score had worse survival (median: 147 vs 402 days, p <.001) and shorter time on trial (median: 49 vs 84 days, HR = 1.53, p <.001), as well as a lower likelihood of completing the DLT period (72.1% vs 80.8%, p =.015). Patients with a poor prognosis score had a higher risk for ER visits (HR 1.66; p =.037) and hospitalizations (HR 1.69; p =.016) while on trial, with earlier hospice enrollment (HR 2.22; p =.006) following the trial. Patients with a poor prognosis score were significantly more likely to receive palliative care before/during trial (46.8% vs 27.6% p =.001), but not social work (41.4% vs 41.4% p = 1.00), PT (44.1% vs 34.7%; p =.098), or nutrition (40.5% vs 37.2%; p =.557). Conclusions: EP-CT participants represent a unique population of patients with advanced cancer, and we identified a group at risk for particularly poor outcomes, including worse survival, shorter time on trial, and greater use of healthcare services. Although patients with a poor prognosis score had higher rates of palliative care use, under half received supportive care services, underscoring the need for efforts to prospectively target these patients with interventions that address their supportive care needs.

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Healthcare Providers’ Perspectives of the Supportive Care Needs of Women with Advanced Breast Cancer in Ghana

10.21203/rs.3.rs-983584/v1 ◽

2021 ◽

Author(s):

Cynthia Pomaa Akuoko ◽

Shirley Chambers ◽

Patsy Yates

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Advanced Breast Cancer ◽

Healthcare Providers ◽

Advanced Breast ◽

Supportive Care Needs ◽

Multidisciplinary Teams ◽

Care Needs ◽

Key Informants ◽

Care Services

Abstract PurposeThe study sought to understand the supportive care needs of women with advanced breast cancer (ABC) 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 ABC 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 ABC 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.

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Differences among Asian/Asian American, and Caucasian breast and gynecologic cancer patient-reported survivorship needs, symptoms, and illness mindsets (N=220).

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.11620 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 11620-11620

Author(s):

Lidia Schapira ◽

Elisa Hofmeister ◽

Allison W. Kurian ◽

Sean Zion ◽

Hanyang Shen ◽

...

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Asian American ◽

Physical Symptoms ◽

Supportive Care Needs ◽

Depression Symptoms ◽

Care Needs ◽

Gynecologic Cancers ◽

Patient Reported ◽

Caucasian Patients

11620 Background: Cancer experiences are mediated by host and disease factors and affected by social and cultural determinants of health. We sought to characterize perceived supportive care needs and domains of psychosocial functioning among a diverse group of women attending routine appointments for treatment or follow-up of breast and gynecologic cancers. Methods: From July 2018 until January 2019, all patients seen at the Stanford Women’s Cancers Program (serving women treated for breast and gynecologic cancers) were approached to participate. 220 cancer patients (78% breast and 22% gynecologic), mean age 54 (SD = 12) completed an online survey on their supportive care needs assessment (The Short-form Supportive Care Needs Survey Questionnaire) which contains physical, social, information, sexual and psychological scales, anxiety and depression (Patient Health Questionnaire-4) and mindsets about illness and the body mindset (Brief Illness Mindset Inventory). Only 14% of patients refused to take part in the survey. Results: T-test showed that Asian/Asian-American cancer patients (n = 57, 26%) reported fewer needs related to coping with physical symptoms, side effects of treatment and performing usual tasks and activities compared to Caucasian patients (n = 137, 62%), p = .038. Moreover, Asian/Asian-American cancer patients reported fewer depression symptoms (p = .049). Chi-square analyses showed that Asian/Asian-American patients reported less use of psychotherapy over their lifetimes (24.6% vs. 54.0%, p < .001), but significantly higher utilization of Chinese Medicine for cancer symptom management (24.6% vs. 5.8%; p < . 001) compared to the Caucasian patients. T-tests showed that Asian/Asian American patients reported significantly greater agreement with the mindsets that ‘cancer is a catastrophe’ (p = .006) and that their ‘body is an adversary’ (p = .047). Conclusions: In this population of breast and gynecologic patients and survivors we found differences in cancer mindsets, coping and use of mental health and complementary therapies between Asian and Asian-American and Caucasian women. Further analysis to understand the cultural differences are ongoing.

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