Validation of the 34-item Supportive Care Needs Survey and 8-item breast module French versions (SCNS-SF34-Fr and SCNS-BR8-Fr) in breast cancer patients

This study aimed to assess the psychometric robustness of the French version of the Supportive Care Needs Survey and breast cancer (BC) module (SCNS-SF34-Fr and SCNS-BR8-Fr). Breast cancer patients were recruited in two hospitals (in Paris, France and Lausanne, Switzerland) either in ambulatory chemotherapy or radiotherapy, or surgery services. They were invited to complete the SCNS-SF34-Fr and SCNS-BR8-Fr as well as quality of life and patient satisfaction questionnaires. Three hundred and eighty-four (73% response rate) BC patients returned completed questionnaires. A five-factor model was confirmed for the SCNS-SF34-Fr with adequate goodness-of-fit indexes, although some items evidenced content redundancy, and a one-factor was identified for the SCNS-BR8-Fr. Internal consistency and test-retest estimates were satisfactory for most scales. The SCNS-SF34-Fr and SCNS-BR8-Fr scales demonstrated conceptual differences with the quality of life and satisfaction with care scales, highlighting the specific relevance of this assessment. Different levels of needs could be differentiated between groups of BC patients in terms of age and level of education (P < 0.001). The SCNS-SF34-Fr and SCNS-BR8-Fr present adequate psychometric properties despite some redundant items. These questionnaires allow for the crucial endeavour to design appropriate care services according to BC patients' characteristics.     

Psychometric validation of the French version of the Supportive Care Needs Survey for Partners and Caregivers of cancer patients

The objective of this study was to assess the psychometric properties of the French version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS‐P&C‐F). The SCNS‐P&C‐F, the Hospital Anxiety and Depression Scale (HADS) and the CareGiver Oncology Quality of Life questionnaire (CarGOQoL) were completed by 327 caregivers at the baseline. The SCNS‐P&C‐F was completed a second time by 121 participants within 30 days. Four factors were retained with a good explanation of variance (82.65%) and acceptable internal consistencies (α: 0.70 to 0.94): 1) Health Care Service and Information Needs, 2) Emotional and Psychological Needs, 3) Work and Social Security Needs and 4) Communication and Family Support Needs. Overall, convergent and divergent validities were confirmed. The caregiver's gender, age, professional status and level of anxiety and depression, as well as the type of relationship with the patient and cancer, showed an effect on some caregivers’ unmet supportive care needs. Lastly, the test–retest reliability was acceptable (> 0.70), except for the communication and family support dimension. The scale is appropriate for clinical and research use (e.g. good reliability and validity).     

Assessing psychological and supportive care needs in glioma patients – feasibility study on the use of the Supportive Care Needs Survey Short Form (SCNS‐SF34‐G) and the Supportive Care Needs Survey Screening Tool (SCNS‐ST9) in clinical practice

Neuro‐oncological patients experience high symptom and psychosocial burden. The aim was to test feasibility and practicability of the Supportive Care Needs Survey Short Form (SCNS‐SF34‐G) and the SCNS‐Screening Tool (SCNS‐ST9) to assess supportive care needs of neuro‐oncological patients in clinical routine. A total of 173 patients, most with a primary diagnosis of high‐grade glioma (81%), were assessed first using SCNS‐SF34‐G in comparison to two well‐established patient‐reported outcome measures, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQC30 + QLQ‐BN20) and Distress Thermometer (DT). In a follow‐up assessment, SCNS‐ST9 was used in a subgroup (n = 90). Questionnaires were completed either with personal guidance offered (group A) or by patients alone (group B). Feasibility was compared between instruments and groups for possible associations with patient and treatment‐related factors. Missing values occurred in similar frequencies in all instruments. Errors in completion occurred in SCNS‐SF34‐G in 20% and in SCNS‐ST9 in 16%; difficulties in completion were observed more often in SCNS‐SF34‐G and SCNS‐ST9 (39%) compared to DT and EORTC (13%, p < .001). Distress was found to be associated with difficulties in completion of SCNS (OR 1.4, [95% CI 1.1–1.9], p = .013). SCNS‐SF34 and SCNS‐ST9 are suitable tools for glioma patients as long as personal guidance is offered.     

Gynecological Cancer Survivors: Assessment of Psychological Distress and Unmet Supportive Care Needs

This study highlights psychosocial needs of gynecological cancer survivors, contributing to evaluation of the Cancer Survivors Unmet Needs measure. Of the 45 participants, 28.9% reported clinical anxiety, 20.0% mild-to-severe depression, and 15.6% had probable posttraumatic stress disorder. Strength of unmet needs was associated with anxiety, depression, posttraumatic stress, poorer quality of life, younger age, and greater time since diagnosis. Linear regressions showed clinical measures, quality of life, optimism, and self-blaming coping style explained 56.4% of strength of unmet needs. Anxiety, functional well-being, posttraumatic stress, and emotional well-being accounted for 40.7% of variance in fear of recurrence, with emotional well-being the strongest predictor.     

Assessment of Unmet Supportive Care Needs in Haematological Cancer Survivors

Background: Health needs assessment is crucial for the provision of individualized nursing care. However, manypatients report a significant number of unmet needs. The aim of the present study was the assessment of self-reportedunmet supportive care needs among haematological cancer survivors in Greece. Methods: 102 patients (mean age 66.2years old) diagnosed with haematological cancer were included in a cross-sectional study, conducted in two major Greekpublic hospitals, between October and December 2016. Patients’ needs were assessed using the ‘Needs EvaluationQuestionnaire’ (NEQ). Data analysis was conducted using the Statistical Package for Social Sciences software forWindows. Alfa-level (p-value) selected was 5%, bootstrap techniques were used for 95% CI estimation, χ2 was used fordifferentiation control and Kuder-Richardson coefficient for reliability score assessment (ρ = 0.922). Results: Patientsreported higher needs levels “to receive less commiseration from other people” (48%), “more information about myfuture condition” (44.1%) and “to feel more useful within my family” (42.2%). In contrast, patients reported lowerlevels to the needs “to speak with a spiritual advisor” (11.8%), “to have more help with eating, dressing and going tothe bathroom” (13.7%) and “better attention from nurses” (18.6%). The mean score of satisfied patients (≥8/10) was8.9 (SD 1.7). Associations between socio-demographic, hospitalization data and unmet needs groups were identified.The less satisfied patients (<8/10) reported more informational needs about their diagnosis and their future condition(p-value=0.002), about their exams and treatments (p-value=0.001), communicative (p-value <0.001), assistanceand treatment (p-value<0.001) and hospital infrastructure (p-value <0.001). Conclusion: Various factors seem to beassociated to the prevalent unmet care needs among haematological cancer patients. Establishing NEQ as a routineneeds assessment tool could aid health professionals to early identify patients’ needs in a busy clinical setting andimplement more individualized and patient-centered quality care.     

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.     

Psychometric Properties of the Thai Version of Supportive Care Needs Survey-Partners and Caregivers (T- SCNS-P&C) for Cholangiocarcinoma Caregivers

Background: Unmet needs of cancer patients and caregivers are also closely linked with patients and their family well-being. Identifying and focusing on caregivers’ unmet need have been recommended to reduce their burden and improve their quality of life (QOL). This study aimed to evaluate the psychometric properties of the Thai version of Supportive Care Needs Survey for Partners and Caregivers (T-SCNS-P&C) among Cholangiocarcinoma (CCA) caregivers. Methods: The T-SCNS-P&C was developed using standardized translation methodology. A total of 231 CCA caregivers completed the T- SCNS-P&C. The internal consistency of the scale was examined with Cronbach’s alpha. Construct validity was analyzed using Pearson correlations coefficient with the physical effects, stage, anxiety and depression, age, and education level. To assess the factorial validity of the T-SCNS-P&C, confirmatory factor analysis (CFA) was performed. Results: The T- SCNS-P&C indicated good readability and high content validity for use as an assessment tool among Thai CCA caregivers. All Cronbach’s α coefficients were above the minimum acceptable criterion of ≥0.70. For construct validity, higher physical effect scores and higher anxiety and depression scores, as well as poorer QOL scores and younger caregivers, were significantly positively associated with higher levels of unmet needs. CFA indicated that the four factor structure of the T-SCNS-P&C was a good fit to the data. Conclusion: The T-SCNS-P&C demonstrated acceptable reliability and validity for assessing unmet needs among CCA caregivers in Thailand. Using this simple assessment to target the individual needs of these caregivers can help healthcare professionals providing effective personalized care.     

The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure)

BACKGROUND: Many cancer survivors experience ongoing morbidity over the survivorship continuum and their supportive care needs have yet to be comprehensively assessed. METHODS: This study aimed to develop and empirically evaluate a self-report measure of cancer survivors' supportive care needs. In Phase I, questionnaire items were generated based upon previous qualitative research that identified both unique and shared needs in survivors and their partners; items were constructed into the Cancer Survivors' Unmet Needs measure (CaSUN). In Phase 2, the CaSUN was completed by 353 cancer survivors who had been diagnosed with cancer between 1 and 15 years earlier and were currently disease-free. RESULTS: After modification, the CaSUN included 35 unmet need items, 6 positive change items and an open-ended question. Good acceptability, internal consistency and validity were demonstrated, although test-retest reliability was low. Maximum likelihood factor analysis identified five discrete factors: Existential Survivorship, Comprehensive Care, Information, Quality of Life and Relationships. CONCLUSIONS: Preliminary data indicates that the CaSUN meets the majority of psychometric criteria for assessment measures, although its low test-retest reliability awaits further investigation. The CaSUN will facilitate the evaluation of supportive care services and generation of service delivery recommendations for cancer survivors.     

Psychometric evaluation of the German Version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS‐P&C‐G) of cancer patients

This study aimed for psychometric validation of the German version of the Supportive Care Needs Survey for Partners and Caregivers (SCNS‐P&C‐G). In‐ and outpatients with lung, urological and gastrointestinal cancer at Heidelberg University Hospital in Germany and in each case one relevant caregiver were asked to complete a set of questionnaires assessing their unmet needs together with distress, depression, anxiety and caregiver strain. In addition, medical data of the patients were collected. Fully completed questionnaires were received from 188 pairs of patients and their caregivers. Using exploratory factor analysis, four domains of unmet needs were identified with an appropriate variance explanation (58.7%) and acceptable (>0.70) internal consistencies (α = 0.95 to 0.76) for each domain. Convergent validity was found with respect to significant positive correlations (>0.40) of the SCNS‐P&C‐G domains with caregivers’ anxiety, depression and strain. Although poorer health status of the patient indicated more unmet caregiver needs, this finding was not consistent for all need domains. Overall, associations were only moderate to weak pointing out the necessity of a separate screening for caregivers’ needs. The findings of this study support that the SCNS‐P&C‐G is an appropriate research instrument to assess caregivers’ needs on different domains throughout the disease trajectory.     

Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time

Providing for patients' psychosocial needs is a potential means of minimising cancer morbidity. Needs assessments can guide responsive patient-centred care. A longitudinal survey of women with early breast cancer consulting a breast nurse in a primarily rural state of Australia was undertaken to measure unmet supportive care needs, identify changes in unmet needs across time and compare results with previous studies. Needs assessments were completed with the Supportive Care Needs Survey (SCNS) at 1 month (n = 74) and 3 months (n = 83) post-diagnosis. Access to services was also examined. High levels of psychological and health system and information needs were identified at 1 month post-diagnosis, but these decreased significantly at 3 months post-diagnosis. Sexuality domain needs increased significantly during the same time. Compared to a previous SCNS study of rural women with breast cancer, unmet supportive care needs in this study were significantly lower than previously reported, although assistance with energy levels (i.e. fatigue) continues to be an unmet need for women with breast cancer. Results suggest there have been positive cultural changes within healthcare systems, specifically in better informing patients and providing support. Although services appear to be more responsive to breast cancer patients, significant unmet needs still exist.     

Unmet needs of gynaecological cancer survivors: implications for developing community support services

After treatment completion, gynaecological cancer survivors may face long-term challenges and late effects, specific to this disease. Available research on supportive care needs of women with gynaecological cancer is limited. This study aimed to determine the prevalence and correlates of unmet needs within a population of gynaecological cancer survivors. Eight hundred and two women participated in a population-based mail survey in 2004 (56% response rate). The questionnaire included a validated instrument to assess 45 need items across multiple supportive care domains, and a range of measures to evaluate related correlates consistent with a social-ecological perspective. Forty-three per cent of respondents reported having at least one moderate- or high-level unmet need. The five highest included needing help with fear about the cancer spreading (17%), concerns about the worries of those close to them (15%), uncertainty about the future (14%), lack of energy/tiredness (14%), and not being able to do things they used to do (14%). Subgroups of women with higher odds of reporting 'some' unmet needs across multiple supportive care domains include those who, are not in remission, live with lymphoedema or are unable to work due to illness. Odds were also higher for women who had undergone more recent treatment, and who lived in rural or remote locations. Further assistance with the top specific concerns of gynaecological cancer survivors is recommended. Identified subgroups with higher needs are important targets for support.