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.     

The supportive care needs survey for partners and caregivers of cancer survivors: development and psychometric evaluation

Objective: Begin to test the psychometric properties of a measure designed to capture the multi‐dimensional supportive care needs of cancer caregivers: the Supportive Care Needs Survey—Partners and Caregivers (SCNS‐P&C). Methods: Draft SCNS‐P&C items were developed with reference to the literature and existing instruments and reviewed for face and content validity. The final SCNS‐P&C was then completed by 547 cancer caregivers. Psychometric analyses conducted included principal factor analysis, internal consistency, and construct validity through the known‐group approach. Results: Factor analysis revealed four domains of needs: Health Care Service Needs, Psychological and Emotional Needs, Work and Social Needs, and Information Needs, with Cronbach's α coefficients ranging from 0.88 to 0.94. Construct validity of the SCNS‐P&C was partially supported. Across all domains, individuals with anxiety or depression were more likely to report at least one unmet moderate or high need in comparison to non‐anxious or non‐depressed participants. A greater proportion of younger participants experienced at least one unmet moderate or high need within the Psychological and Emotional Needs and Work and Social Needs domains. Proportion of reported unmet needs varied across cancer types for the Health Care Service Needs and Information Needs domains. Conclusions: The SCNS‐P&C has the potential to comprehensively assess the range of caregivers' supportive care needs, across the illness trajectory. Analyses supported the tool's internal consistency and construct validity. The SCNS‐P&C can be used by researchers and clinicians to determine caregivers' unmet needs, prioritise health‐care resources, and tailor supportive cancer care services accordingly. Copyright © 2010 John Wiley & Sons, Ltd.     

Predictors of change in unmet supportive care needs in cancer

Objective: Patient Reported Outcome (PRO) assessments can assist health professionals to tailor their health practices to the individual needs of patients and improve patient care over time. The present study assessed prospective predictors of unmet supportive care needs in cancer patients over a six‐month period. Methods: Participants were recruited from a regional cancer treatment centre in Australia and completed the Supportive Care Needs Survey (SCNS) at recruitment (n=439; 61.4% response rate) and six months follow‐up (n=396). Hierarchical logistic regression was used to identify predictors of change in unmet needs across each supportive care domain. Predictor variables were socio‐demographic, treatment and psychosocial factors including depression, anxiety, social support, and patient satisfaction. Results: Unmet needs were reported by approximately two‐thirds of patients at baseline and half of patients at six months follow‐up. Having unmet needs at baseline was the strongest predictor of unmet needs at six months. Longer time since diagnosis was a consistent predictor of greater unmet needs, associated with change in physical/daily living, psychological and health system and information unmet needs over time. By contrast, a complex relationship was found in that patient satisfaction, psychosocial and treatment characteristics predicted higher needs in some domains and lower needs in others. Conclusions: Unmet supportive care needs persist over time and psychological needs may emerge later in the illness continuum. Interventions to meet the needs of longer term cancer survivors are needed and should closely articulate with reported supportive care needs. Copyright © 2009 John Wiley & Sons, Ltd.     

Measuring the unmet supportive care needs of cancer support persons: the development of the Support Person's Unmet Needs Survey – short form

Few rigorous measures of unmet needs have been developed for cancer support persons. This study describes the development of a short version of the Support Person's Unmet Needs Survey (SPUNS). Cancer survivors [n = 1589, 612 (52%) men, mean age of 62.5 years, SD 11.5] 1–5 years post diagnosis and recruited through three Canadian population‐based cancer registries were asked to pass a survey package on to their principal support person. Surveys were returned by 1183 support persons. The survey included the long form of the SPUNS, which contains 78 items. Fifty‐two items were deleted using a combination of expert opinion and statistical criteria. Analysis of the remaining items revealed a five‐factor structure. The original factors were retained with the exception of a merging of the personal and emotional needs subscales. Cronbach's alpha co‐efficients for all subscales were ≥0.87, and intraclass correlation of domain scores of the short and long versions of the SPUNS were high. The SPUNS short form was able to discriminate between support persons of survivors who had (n = 147), and those who had not received treatment in the past month (n = 969). At just 26 items, it is likely to have strong clinical and research applicability.     

Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines

Cancer information services are a highly accessible source of support for people affected by cancer. To date the nature and extent of distress experienced by such callers and their unmet support needs have not been well described. A cross-sectional survey of 354 cancer patients and 336 carers who reported elevated distress on contact with a cancer information service assessed socio-demographic variables; anxiety, depression and somatization; unmet supportive care needs; cancer-specific distress; presenting problems; post-traumatic growth. Adjustment to cancer was most commonly reported; followed by anxiety. In all, 53.4% of patients and 45.2% of carers reached caseness in anxiety, depression or somatization. Carers had higher distress ratings and intrusive thinking compared to patients; whereas patients had higher somatization. For patients, most unmet supportive care needs were psychological; for carers unmet needs were related to health care services and information related to the person diagnosed with cancer. Being single, unemployed, in treatment, having higher initial distress scores, higher intrusion and avoidance predicted poorer outcomes. Information service frameworks should include distress screening and clear triage and referral processes for psychological care.     

An exploratory study into the unmet supportive needs of breast cancer patients

This study explores the unmet supportive needs of people with breast cancer attending a London NHS Foundation Trust Hospital. A mixed methods approach was used. One hundred and one patients completed a specially designed questionnaire focusing on their concerns in the previous week, and whether they felt they had been offered sufficient support from health professionals. Seven semi‐structured interviews were then completed in order to gain insight into the need for future developments of services for patients with breast cancer. Pearson's chi‐squared analysis was used to examine whether symptoms reported within 1 year of diagnosis differed from symptoms reported more than 1 year post diagnosis. Fatigue was the most common concern expressed (53%) with no significant difference between the two groups. Emotional concerns and pain were also highly reported (35% and 36%). Only 32% of the questionnaire participants reported that they had been offered support in dealing with their concerns. Most participants (65%) would have liked more support from the healthcare team. From the interviews it was clear that whilst there are gaps in services available, participants were not aware of the range of services already available for people with breast cancer. The results of this study have helped to inform service development, particularly around the management of fatigue.     

Unmet supportive care needs,health status and minimum costs in survivors of malignant melanoma

We explored the relationship between unmet care needs, health status, health utility and costs in people treated for melanoma via a cross‐sectional follow‐up survey (N = 455) 3 months to 5 years after complete resection of stage I–III cutaneous malignant melanoma. 51% (n = 232) had unmet care needs. This group had higher mean resource use, estimated conservatively (£28 vs. £10 per person) and worse overall health. Mean health‐related utility index (AQoL6D) was 0.763 (95% CI 0.74; 0.79) in those with self‐reported unmet need vs. 0.903 (0.89; 0.92) in those with no unmet need. Melanoma survivors with unmet need had worse outcomes in terms of anxiety (HADS 6.86 vs. 4.29), depression (HADS 4.29 vs. 2.01), overall quality of life (QoL: FACT‐M 84.2 vs. 96.5). Higher resource use was associated with younger age (r_s = ?.29, p < .001), older school‐leaving age (r_s = .21, p < .001), reduced health utility (r_s = ?.14, p = .005), higher anxiety (r_s = .22, p < .001), higher depression (r_s = .16, p = .001) and lower QoL (overall r_s = ?.24, p < .001; melanoma QoL r_s = ?.20, p < .001; surgery QoL r_s = ?.19, p < .001). Lower health outcomes indicate increased service use, suggesting that interventions to address unmet need and improve health outcomes may reduce health costs. Integrated clinical and economic evaluations of interventions that target unmet need in melanoma survivors are required.     

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.     

Assessing the unmet supportive care needs of newly diagnosed patients with cancer

Adequate monitoring in cancer control needs to include measures of psychosocial outcomes so as to take account of the totality of the felt cancer experience. There is a need to know whether the experience of cancer is changing, as well as a need for tools to identify where supportive care interventions or services could be targeted to good effect. The aim of this study was to investigate the utility of using a telephone-administered survey to identify the unmet needs of cancer patients. Participants were identified from a statewide population-based cancer registry following an episode of hospitalized care in Victoria (Australia). Of the 506 eligible patients, 236 completed a telephone adaptation of the Supportive Care Needs Survey-Short Form (SCNS-SF31). Sampling from the cancer registry was shown to provide timely contact with patients. Results from the survey indicated that perceived needs for this newly diagnosed group of cancer patients were mostly in the area of information provision. Results also showed that some socio-demographic and disease-specific variables affected the level of perceived unmet needs. Overall, this study indicated that registry-based sampling was practical and the telephone adaptation of the SCNS-SF31 provided a reliable method to explore the unmet needs of newly diagnosed patients with cancer.     

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.     

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).