Psychometric properties of the Dutch extended Cancer Survivors’ Unmet Needs measure (CaSUN‐NL)

Information and support needs increase emotional distress and can impede cancer survivors’ adjustment. To investigate the information and support needs of Dutch cancer survivors, the Cancer Survivors’ Unmet Needs measure (CaSUN) was translated into Dutch and applied in two Dutch studies with cancer survivors (N = 255; N = 467). The CaSUN‐NL entailed the original five CaSUN scales, extended with respectively a returning to work and lifestyle scale. This study aimed to determine the psychometric properties of the CaSUN‐NL. To assess validity, a maximum likelihood factor analysis was employed. Construct validity was analysed using Pearson's and Spearman's correlation coefficients. To assess reliability, test–retest (Kappa coefficient) and internal consistency (Cronbach's alpha) values were determined. Factor analysis revealed the original five factors. Test–retest reliability was low (r ≤ .15, 93% retest response). Internal consistency values were high (Cronbach's alpha = 0.92–0.94), except for lifestyle. Significant correlations were found between total number of unmet needs with anxiety (r = .55), depression (r = .49), negative adjustment (r = .50), quality of life (r = ?.52) and age (r = ?.24). The CaSUN‐NL is valid and reliable to investigate the unmet information and support needs of Dutch cancer survivors.     

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.     

Assessing unmet supportive care needs in partners of cancer survivors: the development and evaluation of the Cancer Survivors' Partners Unmet Needs measure (CaSPUN)

BACKGROUND: Partners of cancer patients typically provide the majority of patients' emotional and physical care. Partners may be profoundly affected by the cancer and may experience ongoing supportive care needs across the survivorship continuum. Research has been restricted by a lack of psychometrically evaluated measures and in this study, a self-report measure of partners' needs was developed and empirically evaluated. METHODS: Questionnaire items generated from a qualitative study were constructed into a 47- item unmet need measure (Cancer Survivors' Partners Unmet Needs measure, CaSPUN). The psychometric properties of the CaSPUN were evaluated in 212 partners of patients who had been diagnosed with cancer 1-11 years earlier and were currently disease-free. RESULTS: The CaSPUN was modified to include 35 unmet need items, 6 positive change items and an open ended item. The CaSPUN demonstrates a high level of acceptability, internal consistency and construct validity, although test-retest reliability was moderate. Factor analysis identified five discrete factors: (1) Relationships, (2) Information, (3) Partner Issues, (4) Comprehensive Care and (5) Emotional Support. CONCLUSIONS: The CaSPUN permits the identification of long-term supportive care needs in generic populations of cancer survivors' partners and will assist with the formulation of recommendations regarding required supportive care services.     

Validation of the Chinese version of the short-form Supportive Care Needs Survey Questionnaire (SCNS-SF34-C)

Background: There is no instrument available in Chinese for assessing psychosocial needs. This study aimed to assess the validity and reliability of the Chinese version of the Supportive Care Needs Survey short form (SCNS‐SF34‐C) in Chinese women with breast cancer (BC). Methods: The Chinese version of the 34‐item SCNS‐SF34‐C, a self‐report measure for assessing psychosocial unmet needs, was administered to 348 Chinese women with BC at the outpatient oncology unit. Exploratory factor analysis (EFA) tested the factor structure. The internal consistency, convergent, divergent, and discriminant validity of the identified factor structure were assessed. Results: In contrast to the five‐factor structure identified in the original 34‐item SCNS‐SF34, our EFA produced a 33‐item solution accounting for 54% of score variance comprising four‐factors: (1) Health system, information, and patient support, (2) Psychological needs, (3) Physical and daily living, and (4) Sexuality needs. Separate dimensions for Health system and information, and the Patient care and support domains were not supported. Cronbach alphas ranged from 0.75 to 0.92. Correlations of psychological and physical symptom distress measures indicated acceptable convergent validity. No correlation with optimism and positive affect measures indicated divergent validity. Discriminant validity was demonstrated by effective differentiation between clinically distinct patient groups (no active treatment versus active treatment; advanced BC versus localized BC). Discussion: The Chinese version of the Supportive Care Needs Survey has suitable factor structure and psychometric properties for use in assessing psychosocial needs among Chinese women with BC. Further validation is needed for other cancer types. Copyright © 2010 John Wiley & Sons, Ltd.     

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.     

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.     

Age‐related supportive care needs of women with gynaecological cancer: A qualitative exploration

Women with gynaecological cancer (GC) experience significant morbidity with associated needs for support, not all of which are currently met by the current system. Types and levels of unmet needs vary across age and the care continuum. This study aimed to identify the shared and unique supportive care needs of younger and older GC patients and survivors to inform improved supportive care. Nineteen younger and ten older women, 3 months to 5 years post a GC diagnosis, were purposively recruited during active treatment, and at early and extended survivorship. Audiotaped and transcribed semi‐structured interviews were thematically analysed to establish areas of needs. GC patients reported nine shared needs relating to support, isolation, uncertainty, information, asking questions, escape from illness, advocacy, loss and finding meaning. Younger patients reported unique needs related to the impact of treatment‐induced menopause. There is a need for a systematic screening process to identify women who require and want additional help, to ensure appropriate and timely assistance or referrals are provided. Identification of needs will allow health professionals to provide relevant and timely information and support services, resulting in improved quality of life for women affected by GC.     

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.     

Relationships between supportive care needs and perceived burden in breast cancer survivor–caregiver dyads

While burden in cancer caregivers is high and associated with poor outcomes, little is known about significance of specific supportive care needs’ domains in determining survivors’ or caregivers’ perceived caregiver burden. This cross‐sectional study explored which domains of survivor‐ and caregiver‐reported supportive care needs were most associated with survivor‐ and caregiver‐reported caregiver burden, in breast cancer survivor–caregiver dyads. Cancer survivors (N = 55) and their caregivers (N = 44) completed measures of supportive care needs, anxiety, depression, functional well‐being and perceived caregiver burden. Correlation and linear regression analyses were used to determine relative significance of survivor and caregiver supportive care needs in accounting for variance in survivor and caregiver perceptions of burden. Higher survivor‐perceived caregiver burden and higher caregiver‐perceived difficulty of caregiving were associated with higher levels of survivor and caregiver supportive care needs. Survivors’ psychological needs uniquely contributed to survivors’ self‐perceived burden, and survivors’ sexual needs and caregivers’ work and social needs uniquely contributed to caregivers’ perceived difficulty of caregiving. Caregiver's perceived time spent caregiving was associated with access to services needs but not other needs. Survivor and caregiver supportive care needs and burden appear interdependent. Longitudinal research with larger samples is warranted to examine these relationships.     

Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients

GRIESSER A.‐C., VLASTOS G., MOREL L., BEAUME C., SAPPINO A.‐P. & HALLER G. (2010) European Journal of Cancer Care
Socio‐demographic predictors of high support needs in newly diagnosed breast cancer patients This study aimed to identify high support needs and their socio‐demographic predictors to improve supportive care for newly diagnosed breast cancer patients. A cross‐sectional study measured patients' needs and unsatisfied support needs by the supportive care needs survey (SCNS‐34), administered after surgery, chemotherapy or radiotherapy. Socio‐demographic, disease and treatment characteristics completed data collection. A total of 308 questionnaires were completed with a response rate of 88%. The most frequent support needs (73.3% of patients) related to information and the highest unsatisfied support needs to the management of emotions and daily life (36.3–39.6% of patients). Younger age predicted high and dissatisfied support needs (P < 0.05). Patients born outside Switzerland or with a lower level of education had more needs in daily living and psychological domains (P < 0.05). Being born outside Switzerland also predicted dissatisfaction with information provided. Being parent was a predictor of significant needs in the daily living domain after adjusting for disease and treatment characteristics (P= 0.01). Therefore, information, psychological and daily living support for newly diagnosed breast cancer patients should be strongly reinforced, particularly in patients being born outside Switzerland, those with children or being younger. For the latter, support in sexuality domain should also be emphasised.     

A rapid review of needs assessment tools for post‐treatment cancer survivors

Relevant, comprehensive and psychometrically rigorous needs assessment tools are needed to ensure appropriate care is delivered to cancer survivors who have completed treatment. The aim of this rapid review was to identify and describe needs assessment tools that are used in cancer survivors post‐treatment, assess their psychometric properties and describe their use in clinical care. The electronic databases Medline, Cochrane Library, CINAHL and PsycINFO were searched. Six studies were identified that described five needs assessment tools used in cancer survivors post‐treatment. None of these tools covered all domains of unmet need nor demonstrated adequate evidence of all recommended criteria of validity and reliability. Few had been evaluated for use in a clinical environment. Out of the five tools, the Survivor Unmet Needs Survey (SUNS) showed the strongest psychometric properties. There is little empirical evidence available to guide recommendations on the most appropriate process of conducting needs assessment with cancer survivors once they have completed treatment.     

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.