The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties

Abstract

BackgroundRelevant and psychometrically sound needs assessment tools are necessary for accurate assessment of haematological cancer survivors unmet needs. No previous study has developed nor psychometrically evaluated a comprehensive needs assessment tool for use with population-based samples of haematological cancer survivors. This study aimed to assess the validity and reliability of the Survivor Unmet Needs Survey (SUNS) with haematological cancer survivors.MethodsThe relevance, content and face validity of the SUNS to haematological cancer survivors was assessed using qualitative interviews. Psychometric evaluation was conducted using data collected from haematological cancer survivors, aged 18–80 years at recruitment and recruited from four Australian cancer registries. Construct, convergent and discriminant validity; internal reliability and floor and ceiling effects were assessed. A second survey was completed by a sub-sample of survivors recruited from two of the four registries to assess test-retest reliability.ResultsResults from 17 qualitative interviews confirmed the relevance, face and content validity of the original items of the SUNS for use with haematological cancer survivors. Overall, 1,957 eligible haematological cancer survivors were contacted by the cancer registries. Of these 1,280 were sent a survey, and 715 returned a survey (37% of eligible survivors contacted and 56% of survivors sent a survey). A total of 529 survivors completed all 89 items of the SUNS and were included in the exploratory factor analysis. Exploratory factor analysis supported the original five-factor structure of the SUNS. Evidence for convergent validity was established, with all five domains of the SUNS illustrating a moderate positive correlation with all three subscales of the Depression Anxiety and Stress Scale (DASS-21). All Cronbach’s alpha values were above 0.9 and all corrected item-total correlations were acceptable (>0.2). Criteria for discriminant validity was not met, with only 10 of the 15 (67%) a-priori hypotheses supported. Test-retest reliability was acceptable for 40 of the 89 items (45%) and for three of the five domains. Significant floor effects were evident for all five domains.ConclusionsThe SUNS demonstrates evidence for multiple features of validity and reliability as a measure of unmet needs for haematological cancer survivors. However, evidence supporting some psychometric properties was limited.

Support Needs and Survivorship Concerns of Thyroid Cancer Patients

“…Second, some participants (about 1/3), were > 5 years out from their thyroid cancer treatment and thus their recollection of met needs and (13,14). These would further focus and refine the gaps identified in the current study as well as construct a TC-specific questionnaire for unmet needs similar to what has been done for other cancers or age groups (15,16). Afterwards, interventions to address these gaps, with a particular emphasis on ways to tailor information to specific demographic groups, need to be designed and implemented followed by qualitatively and quantitatively assessing their impact.…”

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

“…Five needs assessment tools were identified as having been used with cancer survivors in the post‐treatment setting. These included the Survivor Unmet Needs Survey (SUNS) (Campbell et al., ; Hall, D'Este, Tzelepis, Sanson‐Fisher, & Lynagh, ), the Short Form Survivor Unmet Needs Survey (SF‐SUNS) (Campbell et al., ), Cancer Survivors Unmet Needs (CaSUN) (Hodgkinson et al., ), Cancer Needs Questionnaire Young People (CNQ‐YP) (Clinton‐McHarg, Carey, Sanson‐Fisher, D'Este, & Shakeshaft, ) and the Childhood Cancer Survivors Study Needs Assessment Questionnaire (CCSS‐NAQ) (Cox et al., ).…”

“…As shown in Table , the development and validation of the needs assessment tools analysed were conducted in cross‐sectional studies. Recruitment of patients to the studies was poor, with participation rates ranging from 37% (Hall et al., ) to 58% (Hodgkinson et al., ). Consequently, these studies run the risk of response bias; the extent of which is difficult to determine as most of the studies did not collect comprehensive demographic data on non‐participants.…”

Test–Retest Reliability of the Short-Form Survivor Unmet Needs Survey

“…[ 17 ] Internal consistency of the SUNS was further tested in two studies of hematological cancer survivor cohorts. A cross-sectional study with 529 hematological cancer survivors[ 18 ] demonstrated overall Cronbach's alpha values >0.9, and a weighted Kappa coefficient score of >0.6 for test–retest reliability; acceptability was reported for 40/89 (45%) items. Qualitative data from 17 semi-structured interviews indicated that the SUNS was considered relevant by this cohort of hematological cancer survivors.…”

“…Qualitative data from 17 semi-structured interviews indicated that the SUNS was considered relevant by this cohort of hematological cancer survivors. [ 18 ] A cross-sectional study of hematological cancer survivors from Australia and Canada ( n = 437) reported similar levels of unmet needs across the two cohorts using the SUNS, with fatigue ( n = 76, 17%) and financial concerns ( n = 39, 9%) rated as high unmet needs. [ 9 ] Despite the clinical utility of the original SUNS, it was considered potentially burdensome for use in the clinical setting given the large number of items ( n = 89).…”