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.

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

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.29_suppl.26 ◽

2020 ◽

Vol 38 (29_suppl) ◽

pp. 26-26

Author(s):

Debra Lundquist ◽

Dejan Juric ◽

Rachel Jimenez ◽

Virginia Capasso ◽

Casandra McIntyre ◽

...

Keyword(s):

Supportive Care ◽

Early Phase ◽

Poor Prognosis ◽

Phase 1 ◽

Supportive Care Needs ◽

Care Needs ◽

Targeted Interventions ◽

Care Services ◽

Patient Reported ◽

Prognosis Score

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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Supportive Care Needs following Cancer Treatment: A Comparison of Breast and Brain Cancer in an Australian Cohort

ISRN Rehabilitation ◽

10.1155/2014/945472 ◽

2014 ◽

Vol 2014 ◽

pp. 1-10 ◽

Cited By ~ 5

Author(s):

Bhasker Amatya ◽

Fary Khan ◽

Louisa Ng ◽

Mary Galea

Keyword(s):

Supportive Care ◽

Unmet Needs ◽

Supportive Care Needs ◽

Psychological Morbidity ◽

Definitive Treatment ◽

Care Needs ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Patient Reported ◽

The Impact

Objective. To assess and identify patient-reported supportive care needs following definitive treatment in persons with breast cancer (BC) and primary brain tumours (gliomas) (BT) in an Australian community cohort and to assess the commonalities and/or discrepancies of the reported needs in these oncological populations. Methods. A prospective cross-sectional survey of persons with BC (n=85) and BT (n=106) using questionnaires for supportive care needs, psychological morbidity, and quality of life. Results. BT participants were younger than BC patients (mean ages 51 and 57 years). The median time since diagnosis for both groups was over 2 years. The level of psychological morbidity, mainly depression, was high in both groups: BC (22%) and BT (20%). Participants in both groups reported at least one need (“met” or “unmet”). The BC patients reported higher numbers of “needs” and “unmet” needs compared with BT patients (mean 13.7 versus 11.6 needs; “unmet” needs mean 6.0 versus 4.1). The common “met” and “unmet” needs highlighted by both groups were comparable; the domain for most “met” needs included comprehensive cancer care, while “unmet” needs related to existential survivorship issues. Conclusion. Despite successful treatment many cancer survivors experience unmet supportive care needs in longer term. Understanding the impact of these beyond the acute phase is important as care shifts to community settings. More research in existential survivorship issues is needed.

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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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Short-Form Supportive Care Needs Survey--Chinese Version

PsycTESTS Dataset ◽

10.1037/t29649-000 ◽

2011 ◽

Author(s):

A. Au ◽

W. W. T. Lam ◽

A. Kwong ◽

D. Suen ◽

J. Tsang ◽

...

Keyword(s):

Supportive Care ◽

Short Form ◽

Chinese Version ◽

Supportive Care Needs ◽

Care Needs

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Psychometric properties of the German version of the Short-Form Supportive Care Needs Survey Questionnaire (SCNS-SF34-G)

Supportive Care in Cancer ◽

10.1007/s00520-011-1351-1 ◽

2012 ◽

Vol 20 (10) ◽

pp. 2415-2424 ◽

Cited By ~ 44

Author(s):

Claudia Lehmann ◽

Uwe Koch ◽

Anja Mehnert

Keyword(s):

Supportive Care ◽

Psychometric Properties ◽

Short Form ◽

Supportive Care Needs ◽

Survey Questionnaire ◽

German Version ◽

Care Needs

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Psychometric Evaluation of the Turkish Adaptation of the Supportive Care Needs Survey–Short Form

Journal of Nursing Measurement ◽

10.1891/1061-3749.26.1.e16 ◽

2018 ◽

Vol 26 (1) ◽

pp. E16-E27

Author(s):

Ilknur Aydin Avci ◽

Hatice Kumcagiz

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Internal Consistency ◽

Short Form ◽

Target Language ◽

Supportive Care Needs ◽

Validity And Reliability ◽

Turkish Version ◽

Care Needs ◽

Source Language

Background and Purpose: The aim of this study is to explore the construct validity and reliability of the Turkish version of the 34-item Supportive Care Needs Survey–Short Form (SCNS-SF34), which was developed by Boyes, Girgis, and Lecathelinais (2009), to assess the needs of cancer patients in Turkey. Methods: The SCNS-SF34 has been translated and tested in various studies in other countries and cultures. The current study examined the validity and reliability of the Turkish adaptation of this survey among Turkish cancer patients. The instrument was translated using a back-translation technique, which includes the use of a panel of experts and interpreters to translate the items from the source language to the target language and then back-translate them into the source language. The study was conducted in Samsun, a city in north Turkey. A total of 573 cancer patients participated in this study. Statistical analyses were made using R program and SPSS, and included internal consistency, reliability, confirmatory and exploratory factor analyses. Results: Exploratory factor analysis adjusted a 5-factor structure (psychological, health systems and information, patient care and support, physical and daily living, and sexuality) explaining 74% of the variance. Cronbach’s α ranged from .71 to .90. Conclusion: Psychometric testing demonstrated satisfactory internal consistency and validity of the instrument for cancer patients. The Turkish version of the SCNS-SF34 can be used in planning and testing interventions to improve supportive care needs for cancer patients in Turkey.

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Supportive care needs among Mexican young women with breast cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.e21552 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. e21552-e21552

Author(s):

C. Lizette Galvez ◽

Cynthia Villarreal-Garza ◽

Alejandro Mohar

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Health Systems ◽

Young Women ◽

Active Treatment ◽

Unmet Needs ◽

Short Form ◽

Unmet Need ◽

Supportive Care Needs ◽

Care Needs

e21552 Background: Despite high rates of breast cancer (BC) in young Mexican women, information about their particular needs and concerns is largely unknown. Understanding the patients individual needs in a population with unique socio-cultural features is essential to guide supportive care and improve their quality of life. We aim to describe the unmet needs of Mexican young women with breast cancer (YWBC). Methods: A cross-sectional study including women with stage I-III BC aged 40 years or younger at diagnosis was conducted at the National Cancer Institute in Mexico City. YWBC were invited to complete the Supportive Care Needs Survey, Short Form-34 (SCNS-SF34), a comprehensive tool that measures the perceived unmet needs of cancer patients. The survey was previously adapted and validated in our population for its use. Results: 81 consecutive patients with median age at diagnosis of 35.09 (SD 3.9) years were included. 45.7% were married and 29.2% completed secondary school. 92.6% had stage II-III BC. 70.4% were undergoing active treatment and 29.6% were either on hormonal therapy or surveillance. From a total standardized score of 100, the health systems and information domain had the highest mean score (39.3), followed by the psychological domain (36.3). The sexuality domain had the lowest mean score (27). The highest ranked items of unmet needs (by mean crude score) were: to be informed about cancer is under control or diminishing (2.9), to be informed about things you can do to help yourself get well (2.8), lack of energy and fatigue (2.7), and fear about the cancer spreading (2.7). Perceived needs among patients undergoing active treatment were greater compared to those in follow-up (z = -2.390 p = 0.017), predominantly in the sexuality domain (z = -2.084 p = 0.037). Conclusions: Mexican YWBC have specific needs that are currently not systematically addressed. The predominant unmet need regarding health systems and information should be a priority. Further research to understand the needs and concerns of this unique and understudied patient population will aid tailor clinical interventions and supportive care.

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