The Supportive Care Needs of Regional and Remote Cancer Caregivers

Objective: As cancer survival rates continue to increase, so will the demand for care from family and friends, particularly in more isolated settings. This study aims to examine the needs of cancer caregivers in regional and remote Australia. Methods: A total of 239 informal (i.e., non-professional) cancer caregivers (e.g., family/friends) from regional and remote Queensland, Australia, completed the Comprehensive Needs Assessment Tool for Cancer Caregivers (CNAT-C). The frequencies of individuals reporting specific needs were calculated. Logistic regression analyses assessed the association between unmet needs and demographic characteristics and cancer type. Results: The most frequently endorsed needs were lodging near hospital (77%), information about the disease (74%), and tests and treatment (74%). The most frequent unmet needs were treatment near home (37%), help with economic burden (32%), and concerns about the person being cared for (32%). Younger and female caregivers were significantly more likely to report unmet needs overall (OR = 2.12; OR = 0.58), and unmet healthcare staff needs (OR = 0.35; OR = 1.99, respectively). Unmet family and social support needs were also significantly more likely among younger caregivers (OR = 0.35). Caregivers of breast cancer patients (OR = 0.43) and older caregivers (OR = 0.53) were significantly less likely to report unmet health and psychology needs. Proportions of participants reporting needs were largely similar across demographic groups and cancer type with some exceptions. Conclusions: Caregiver health, practical issues associated with travel, and emotional strain are all areas where regional and remote caregivers require more support. Caregivers’ age and gender, time since diagnosis and patient cancer type should be considered when determining the most appropriate supportive care.

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Unmet supportive care needs and predictor of breast cancer patients in Bangladesh: A cross-sectional study

Journal of Oncology Pharmacy Practice ◽

10.1177/10781552211039114 ◽

2021 ◽

pp. 107815522110391

Author(s):

Sujana H Chowdhury ◽

Bilkis Banu ◽

Nasrin Akter ◽

Sarder M Hossain

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Cancer Patients ◽

Unmet Needs ◽

Cross Sectional Study ◽

Supportive Care Needs ◽

Breast Cancer Patients ◽

Sectional Study ◽

Care Needs ◽

Cross Sectional

Background Breast cancer survivor goes through a period of needs in their post-treatment daily life. Relatively few studies have been conducted to understand the unmet needs among breast cancer survivors in Bangladesh. Recognize and measure patterns and predictors of unmet needs of breast cancer patients was the aim of the study. Objective To identify and measure patterns and predictors of unmet needs of breast cancer patients in Bangladesh. Method A cross-sectional study among 138 breast cancer patients; conveniently selected from two public and two private cancer institutes. Face-to-face interview for data collection and medical record review for checklist was done. Unmet needs have been determined by the supportive care needs survey short form 34 scale. Logistic regression analyses were performed to identify the predictors of unmet needs. Results The study indicated the top 10 moderate-to-high needs; among which the top five needs were from the information need domain. Surprisingly, private cancer treatment centers were identified as a significant predictor for unmet needs. Patients from private cancer institutes reported more explanation needs as well as needs with their physical and daily living and sexuality. Furthermore, the type of treatment like patient receiving combine treatment therapy reported more need for help compared to the patient receiving chemotherapy alone. Moreover, housewives reported the low need for patient care and support systems as a result of their reluctant behavior towards their health. Conclusion Individual’s unmet need assessment should be a part of every treatment protocol of breast cancer for a better treatment outcome.

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Unmet Needs Among Breast Cancer Patients in a Developing Country and Supportive Care Needs Survey Validation

Revista de investigaci�n Cl�nica ◽

10.24875/ric.21000068 ◽

2021 ◽

Author(s):

Carmen L. Gálvez-Hernández ◽

Allison Boyes ◽

Andrea Ortega-Mondragón ◽

Andrea G. Romo-González ◽

Alejandro Mohar ◽

...

Keyword(s):

Breast Cancer ◽

Supportive Care ◽

Cancer Patients ◽

Developing Country ◽

Unmet Needs ◽

Supportive Care Needs ◽

Breast Cancer Patients ◽

Care Needs ◽

Survey Validation

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Patients' Supportive Care Needs Beyond the End of Cancer Treatment: A Prospective, Longitudinal Survey

Journal of Clinical Oncology ◽

10.1200/jco.2009.22.5151 ◽

2009 ◽

Vol 27 (36) ◽

pp. 6172-6179 ◽

Cited By ~ 354

Author(s):

Jo Armes ◽

Maggie Crowe ◽

Lynne Colbourne ◽

Helen Morgan ◽

Trevor Murrells ◽

...

Keyword(s):

Negative Affect ◽

Supportive Care ◽

Unmet Needs ◽

Unmet Need ◽

Hormone Treatment ◽

Longitudinal Survey ◽

Supportive Care Needs ◽

Fear Of Recurrence ◽

Care Needs ◽

Prospective Longitudinal

Purpose To estimate prevalence and severity of patients' self-perceived supportive care needs in the immediate post-treatment phase and identify predictors of unmet need. Patients and Methods A multicenter, prospective, longitudinal survey was conducted. Sixty-six centers recruited patients for 12 weeks. Patients receiving treatment for the following cancers were recruited: breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin's lymphoma. Measures of supportive care needs, anxiety and depression, fear of recurrence, and positive and negative affect were completed at the end of treatment (T0) and 6 months later (T1). Results Of 1,850 patients given questionnaire packs, 1,425 (79%) returned questionnaires at T0, and 1,152 (62%) returned questionnaires at T1. Mean age was 61 years; and most respondents were female (69%) and had breast cancer (57%). Most patients had no or few moderate or severe unmet supportive care needs. However, 30% reported more than five unmet needs at baseline, and for 60% of these patients, the situation did not improve. At both assessments, the most frequently endorsed unmet needs were psychological needs and fear of recurrence. Logistic regression revealed several statistically significant predictors of unmet need, including receipt of hormone treatment, negative affect, and experiencing an unrelated significant event between assessments. Conclusion Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources.

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Routine assessment of unmet needs in individuals with advanced cancer and their caregivers: A qualitative study of the palliative care needs assessment tool (PC-NAT)

Journal of Psychosocial Oncology ◽

10.1080/07347332.2017.1382645 ◽

2017 ◽

Vol 36 (1) ◽

pp. 82-96 ◽

Cited By ~ 2

Author(s):

Sylvie Lambert ◽

Thomas Bellamy ◽

Afaf Girgis

Keyword(s):

Palliative Care ◽

Qualitative Study ◽

Needs Assessment ◽

Advanced Cancer ◽

Unmet Needs ◽

Assessment Tool ◽

Care Needs ◽

Routine Assessment ◽

Palliative Care Needs

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Assessment of Needs of Hospitalized Cancer Patients with Advanced Cancer

Global Journal of Health Science ◽

10.5539/gjhs.v9n6p184 ◽

2016 ◽

Vol 9 (6) ◽

pp. 184

Author(s):

Theocharis I. Konstantinidis ◽

George Samonis ◽

Pavlos Sarafis ◽

Anastas Philalithis

Keyword(s):

Supportive Care ◽

Psychometric Properties ◽

Advanced Cancer ◽

Unmet Needs ◽

Supportive Care Needs ◽

University Hospital ◽

Validity And Reliability ◽

Treatment Needs ◽

Care Needs ◽

Optimal Care

BACKGROUND: Needs assessment of patients with advanced cancer (ACPs) is essential for optimal care. This study evaluated the psychometric properties of the Needs Evaluation Questionnaire (NEQ) and assessed the supportive care needs of hospitalized ACPs with solid tumors.METHODS: The validated Greek version of the NEQ along with demographic and clinical data of 95 consecutive breast, colon and lung ACPs hospitalized in the University Hospital of Heraklion, Crete, Greece, were used to assess their supportive care needs. The NEQ score was subsequently rescaled to 0-100.RESULTS: NEQ displayed adequate psychometric properties in validity and reliability tests. The average number of needs reported was 8.4(4.1). Female and younger patients reported a higher score of unmet needs than their male (40.3 versus 30.0, p=0.005) and elder (40.1 versus 29.2, p=0.001) counterparts. Patients reported higher needs in receiving information about their future (73.7%), treatments (56.8%), examinations (51.6%) and for the need "to speak with people who had the same experience" (53.7%). In contrast, lower scores were observed in the assistance and treatments needs regarding intimacy (11.6%), "better attention from nurses" (15.8%), "more help with eating, dressing, and going to the bathroom" (18.9%). Lung ACPs reported more assistance and treatment needs than colon and breast ACPs (p<0.05).CONCLUSIONS: ACPs reported many unmet needs, mainly informational, that were related to gender, age, and type of cancer. NEQ is a useful tool in everyday clinical practice for obtaining information for supportive care needs. Health care personnel has to address these needs for implementing effective patient-centered care.

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Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

Psycho-Oncology ◽

10.1002/pon.4778 ◽

2018 ◽

Vol 27 (9) ◽

pp. 2132-2140 ◽

Cited By ~ 3

Author(s):

Adriana Pérez-Fortis ◽

Joke Fleer ◽

Maya J. Schroevers ◽

Patricia Alanís López ◽

Juan José Sánchez Sosa ◽

...

Keyword(s):

Breast Cancer ◽

Longitudinal Study ◽

Supportive Care ◽

Cancer Patients ◽

Supportive Care Needs ◽

Breast Cancer Patients ◽

Care Needs

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QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

Neuro-Oncology ◽

10.1093/neuonc/noab196.750 ◽

2021 ◽

Vol 23 (Supplement_6) ◽

pp. vi189-vi189

Author(s):

Emma Nicklin ◽

Galina Velikova ◽

Adam Glaser ◽

Michelle Kwok-WIlliam ◽

Miguel Debono ◽

...

Keyword(s):

Quality Of Life ◽

Supportive Care ◽

Brain Tumour ◽

Unmet Needs ◽

Supportive Care Needs ◽

Care Needs ◽

Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

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Implementation of a distress/supportive care screening tool in lung and head and neck cancer clinic.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.15_suppl.e21646 ◽

2017 ◽

Vol 35 (15_suppl) ◽

pp. e21646-e21646

Author(s):

Mary Pasquinelli ◽

Sandra Obilade ◽

David Rosenberg ◽

Zane Deliu ◽

Aakash Shah ◽

...

Keyword(s):

Supportive Care ◽

Cancer Patients ◽

Neck Cancer ◽

Screening Tool ◽

Supportive Care Needs ◽

Cancer Center ◽

Head Neck Cancer ◽

Cancer Type ◽

Care Needs ◽

Head Neck

e21646 Background: Identifying and addressing depression, anxiety, and supportive care needs in cancer patients is an emerging standard of care. The Coleman Foundation “Patient Screening Questions for Supportive Care” tool was used with demographic and diagnostic data to investigate the relationships between screening scores. Methods: Lung/head/neck cancer patients at the University of Illinois Cancer Center were screened using the Coleman Foundation tool. This screening tool identified needs in several categories including Patient Health Questionnaire 4 (PHQ-4) scores; practical, family/caregiver, nutritional, treatment, physical, and spiritual/faith/religious concerns; levels of pain, fatigue, physical activity to quantitatively assess patient distress/supportive care needs. Scores were compared with age, sex, race/ethnicity, insurance, cancer type, and cancer stage. Linear regression was used for statistical analysis. Results: We performed initial screening on 164 lung/head/neck patients ages 36-88 (mean 61), with stages IA to IVC (May 2016 to Jan. 2017). Our findings are summarized in below. We found a 1oeffect that racial/ethnic minority status was significantly correlated with higher scores. We found that lung cancer was correlated with higher screening scores than head & neck on initial screen. Medicare insurance was correlated with significantly lower screening scores. Conclusions: Patients with lung/head/neck cancer have significant needs and concerns that go beyond merely treating their cancer. Our findings show that certain demographic groups have especially high burdens in some specific dimensions and that these specific concerns may be predicted based on diagnostic and demographic information. Thus, these findings serve to inform providers as to where and how to focus supportive care for these patient populations. [Table: see text]

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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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