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.     

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.     

Validation of the Modified Thai Cancer Survivor’s Unmet Needs (T-CaSUN) for Cholangiocarcinoma Patients

Background: Cancer survivors frequently experience of unmet demands that are linked to psychological illness, anxiety, and quality of life. Cholangiocarcinoma (CCA) survivors, on the other hand, still lack of validated tool to assess their particular requirements. The aims of this study were to adjust the Cancer Survivors’ Unmet Need Scale (CaSUN) to a shorter form and to examine its psychometric scale-specific features for the Thai CCA survivors. Methods: This cross-sectional study recruited 231 CCA survivors and randomly split them into 2 groups (group 1, n =115, and group 2, n =116). Firstly, we modified and translated the CaSUN to ensure Thai cultural adaptation. Secondly, we used the statistical methods to reduce some items, then an exploratory factor analysis (EFA) using group 1 to explore the factor structure of the T-CaSUN was done. Finally, a confirmatory factor analysis (CFA) using group 2 was conducted to confirm the modified structure suggested by the EFA and to test for the construct validity of the T-CaSUN. Results: Participants consisted of 231 CCA survivors. EFA and CFA organized the four components construct T-CaSUN, which included intensive care, information, relationship, and medical care. The T-CaSUN’s internal reliability was good (Cronbach’s alpha was 0.75). Furthermore, construct validity was linked to bodily consequences, anxiety and depression, support care needs, stage of cancer, and age. For assessing unmet needs among CCA survivors in Thailand, the T-CaSUN exhibited acceptable reliability and validity. Conclusion: The T-CaSUN demonstrated acceptable reliability and validity for assessing unmet needs among CCA caregivers in Thailand. This short form measurement can assist healthcare practitioners in providing successful individualized care by focusing on the particular requirements of these survivors.     

Lymphedema after gynecological cancer treatment : prevalence, correlates, and supportive care needs

BACKGROUND: Few studies have evaluated lymphedema after gynecological cancer treatment. The aim of this research was to establish prevalence, correlates, and supportive care needs of gynecological cancer survivors who develop lymphedema. METHODS: In 2004, a population-based cross-sectional mail survey (56% response rate) was completed by 802 gynecological cancer survivors. The questionnaire included demographic questions, a validated, generic supportive care needs measure, and a supplementary, newly developed, lymphedema needs module. RESULTS: Ten percent (95% confidence interval [CI], 8%-12%) of participants reported being diagnosed with lymphedema, and a further 15% (95% CI, 13%-17%) reported undiagnosed "symptomatic" lower limb swelling. Diagnosed lymphedema was more prevalent (36%) amongst vulvar cancer survivors. For cervical cancer survivors, those who had radiotherapy or who had lymph nodes removed had higher odds of developing swelling. For uterine and ovarian cancer survivors, those who had lymph nodes removed or who were overweight or obese had higher odds of developing swelling. Gynecological cancer survivors with lymphedema had higher supportive care needs in the information and symptom management domains compared with those who had no swelling. CONCLUSIONS: This population-based study provided evidence that lymphedema is a morbidity experienced by a significant proportion of gynecological cancer survivors and that there are considerable levels of associated unmet needs. Women at risk of lymphedema would benefit from instructions about early signs and symptoms and provision of referral information.     

Health and supportive care needs of young adult cancer patients and survivors

PURPOSE A sizable body of literature exists for young adult survivors of childhood cancer but relatively little is known about the health and supportive care needs of older adolescent and young adult cancer survivors. This project assessed priority health and supportive care needs for young adult patients and off-treatment survivors. METHODS 1,088 cancer patients and off-treatment survivors (age 18–39, diagnosed between the ages of 15–35) rank ordered a series of health and supportive care needs. Item rank scores were calculated to prioritize lists of needs for patients receiving treatment and off-treatment survivors, respectively. Differences in rankings based on respondent age, age at diagnosis, years since diagnosis, gender and treatment status (currently receiving treatment or off-treatment) were examined. RESULTS Availability of state-of-the-art treatment specific to this age-group and having adequate health insurance were the most highly-ranked health care needs. Support from family and friends were the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends. Older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one’s own health care and decision-making. Younger respondents reported significantly higher needs for fertility information and services and for scheduling treatments to fit their lifestyles. CONCLUSION Needs of adolescents and young adults with cancer vary along a continuum of care, from diagnosis and treatment through survivorship. Findings emphasize the value of age-appropriate resources and peer support. The study offers direction for delivering services to what previously has been an underserved population.     

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.     

The cancer Support Person's Unmet Needs Survey

BACKGROUND:

A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as “someone you can count on and who helps you with your needs.”

METHODS:

Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front‐line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population‐based cancer registry. They were asked to give the survey to their support person.

RESULTS:

The resulting 78‐item Support Person Unmet Needs Survey has high acceptability, item test‐retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%).

CONCLUSIONS:

This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons. Cancer 2009. © 2009 American Cancer Society.     

Assessing the health care needs of adolescent and young adult cancer patients and survivors

BACKGROUND: Improvements in cancer outcomes observed for the United States population as a whole are not experienced as such by adolescent and young adult (AYA) patients. The objective of this study was to identify important health and supportive care needs for AYA patients and survivors. METHODS: Forty oncology health professionals and 37 young adults (ages 18 years to 44 years; diagnosed between ages 15 years and 39 years) participated on a modified Delphi panel. Over 3 iterative rounds of mailed surveys, participants identified, rank ordered, and rated the importance of various items. RESULTS: Overall, there was general agreement among health care providers and young adult survivors, with some notable exceptions. Providers and young adult survivors agreed on the relative importance of having adequate health insurance and oncology care that addresses the unique developmental characteristics of this population. Compared with health professionals, young adults ranked the importance of opportunities to meet other young adult survivors at a relatively higher level, and they also ranked those opportunities higher than the importance of support from family and friends. CONCLUSIONS: These findings provide oncology professionals and young adults with insight into the others' values and perspectives. These findings also suggest areas in which to target investments of resources to promote quality health care and appropriate informational and supportive care services and to overcome the deficit in survival improvement that has occurred in young adults and older adolescents with cancer.     

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.     

Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach

CHARLIER C., PAUWELS E., LECHNER L., SPITTAELS H., BOURGOIS J., DE BOURDEAUDHUIJ I. & VAN HOOF E. (2012) European Journal of Cancer Care Physical activity levels and supportive care needs for physical activity among breast cancer survivors with different psychosocial profiles: a cluster‐analytical approach The transition from breast cancer patient to survivor is associated with many treatment‐related and psychosocial factors, which can influence health behaviour and associated needs. First, this study aimed to identify clusters of treatment‐related and psychosocial factors among breast cancer survivors. Second, clusters' physical activity levels and care needs for physical activity were evaluated. Breast cancer survivors (n= 440; 52 ± 8 years) (3 weeks to 6 months post treatment) completed self‐reports on physical and psychological symptoms; illness representations; social support and coping; physical activity and care needs for physical activity. Analyses identified four clusters: (1) a low distress‐active approach group; (2) a low distress‐resigned approach group; (3) a high distress‐active approach group; and (4) a high distress‐emotional approach group. Physical activity levels were higher in the low distress groups than in the high distress‐emotional approach group. However, women with low distress and an active approach reported equal care needs for physical activity than women with high distress and an emotional approach. These findings suggest that care needs for physical activity are unrelated to distress and actual physical activity levels. The results emphasise the importance of screening for needs and provide a framework supporting the referral of breast cancer survivors to tailored interventions.     

The memorial anxiety scale for prostate cancer: validation of a new scale to measure anxiety in men with with prostate cancer

BACKGROUND: The psychological difficulties facing men with prostate cancer are acknowledged widely, yet identifying men who may benefit from mental health treatment has proven to be a challenging task. The authors developed the Memorial Anxiety Scale for Prostate Cancer (MAX-PC) to facilitate the identification and assessment of men with prostate cancer-related anxiety. This scale consists of three subscales that measure general prostate cancer anxiety, anxiety related to prostate specific antigen (PSA) levels in particular, and fear of recurrence. METHODS: Ambulatory men with prostate cancer (n = 385 patients) were recruited from clinics throughout the United States. Prior to routine PSA tests, participants completed a baseline assessment packet that included the Hospital Anxiety and Depression Scale; the Distress Thermometer; the Functional Assessment of Cancer Therapy Scale, Prostate Module; and measures of role functioning, sleep, and urinary functioning. PSA values from the last three tests also were collected. Follow-up evaluation was completed within 2 weeks after patients learned of their PSA test result using a subset of these scales. RESULTS: Analysis of the MAX-PC revealed a high degree of internal consistency and test-retest reliability for the total score and for the three subscales, although reliability was somewhat weaker for the PSA Anxiety Scale. Concurrent validity was demonstrated by correlations between the MAX-PC and measures of anxiety. Overall changes in PSA levels were correlated only modestly with changes in MAX-PC scores (correlation coefficient, 0.13; P = 0.02). CONCLUSIONS: The MAX-PC appears to be a valid and reliable measure of anxiety in men with prostate cancer receiving ambulatory care.     

Initial evaluation of the validity and reliability of the culturally adapted Spanish CaSUN (S-CaSUN)

Purpose

There is a dearth of knowledge and limited research on the needs of Hispanic male cancer survivors (HMCSs). There is a clear need for the development of culturally and linguistically adapted needs assessment tools that are valid and reliable for use among the growing HMCS population. Thus, the purpose of this paper is to describe the field testing and psychometric evaluation of the translated and culturally adapted Spanish Cancer Survivor Unmet Needs Measure (S-CaSUN).

Methods

Hispanic male cancer survivors (n?=?84) completed the Spanish CaSUN (S-CaSUN), the Hospital Anxiety and Depression Scale (HADS), and the Functional Assessment of Cancer Therapy-General Population (FACT-GP). Construct validity of the S-CaSUN was assessed by correlation analysis among aforesaid measures. A test-retest procedure with 2-week delay was used to examine reproducibility with a participant subsample (n?=?50). Cronbach’s alpha was computed to assess internal consistency of the S-CaSUN.

Results

Construct validity of the S-CaSUN was estimated by moderate correlation with the HADS anxiety (r?=?0.55, P?<?0.001) and depression scales (r?=?0.60, P?<?0.001) and the FACT-GP (r?=???0.62, P?<?0.001). The test-retest correlation coefficient for the S-CaSUN was 0.78. Cronbach’s alpha was 0.96. Field testing yielded a mean S-CaSUN score of 38.3 (SD?=?26.2); all needs and positive change items were endorsed.

Conclusion

Findings from field testing and preliminary psychometric evaluation of the S-CaSUN provide initial evidence of validity and reliability of the measure and highlight the importance of going beyond translation when adapting measures to take culture, literacy, and language into consideration.

Implications for Cancer Survivors

Reliable, culturally, and linguistically valid instruments facilitate identification of unique unmet needs of Hispanic cancer survivors that, in turn, can be addressed with evidence-based interventions. As cancer centers continue to develop survivorship programs, the S-CaSUN may be useful for a growing group of cancer survivors.

     

Follow-up care for cancer survivors: views of the younger adult

Background:

Since the launch of the National Cancer Survivorship Initiative, there has been a surge of interest surrounding the value and organisation of long-term follow-up care after cancer treatment. We report the views of 309 adult cancer survivors (aged 18–45 years) on provision of follow-up and preferences for care.

Methods:

A total of 207 survivors completed questionnaires before and after routine consultant-led follow-up appointments and 102 were recruited by post. Measures of health status (including late effects, perceived vulnerability to late effects and quality of life), reasons for attending follow-up (clinical and supportive), issues to be discussed at follow-up and preferences for different models of care were assessed.

Results:

In all, 59% of the survivors reported experiencing one or more cancer-related health problems. Survivors rated clinical reasons for attending follow-up more highly than supportive reasons (P<0.001), although nutritional advice and counselling were considered useful (60 and 47%, respectively). Those still receiving scheduled follow-up appointments did not discuss the range of issues intended with ‘late effects'' and ‘fertility'', which were particularly under-discussed. Hospital rather than GP follow-up was more highly rated.

Conclusion:

Survivors value the clinical reassurance currently provided by consultant-led care. However, supportive needs are not systematically addressed. Multi-disciplinary services are recommended to meet supportive needs in addition to clinical care.     

After cancer: the unmet supportive care needs of survivors and their partners

Cancer patients and their partners experience elevated distress and unmet supportive care needs at the time of treatment, however, their ongoing needs have not been adequately described. This qualitative study explores the needs of disease-free cancer survivors and their partners using semi-structured telephone interviews. A convenience sample of 25 key informants' identified needs in the domains of information, health care, physical functioning, relationships, emotions, socio-economic issues, expectations and life perspective; and the positive outcomes are widely reported. The identification of unique needs of survivors and partners supports the development of supportive care measures to specifically assess ongoing care need in these populations.     

Supportive care needs in patients with lung cancer

Introduction: The goal of this study was to characterize the prevalence and intensity of supportive care needs and interest in specific supportive care services among individuals with lung cancer. Method: Participants (n=109) were recruited from two medical centers in Southern California to complete questionnaires on physical and psychological functioning following diagnosis of lung cancer. Results: Participants reported the greatest need in the physical and daily living domain, followed by psychological needs, health system and informational needs, and patient care support needs. The most common unmet need was a lack of energy and tiredness (75%). Higher levels of supportive care needs were associated with worse physical functioning (β=?0.30, p<0.001), greater symptom bother (β=0.25, p=0.008), lower satisfaction with health care (β=?0.24, p=0.002), and higher levels of intrusive thoughts about cancer (β=0.40, p<0.001). The sample was most interested in receiving additional information about their disease and treatment (61.0%), exercise‐related information and support (54.3%), and assistance dealing with fatigue (46.7%). Over 91% expressed interest in at least one specific supportive care service, and 51.4% were interested in one or more psychological services. Conclusion and implications for cancer survivors: Our findings suggest that lung cancer survivors have many unmet needs. Patients who report higher physical distress and intrusive stress symptoms, or lower satisfaction with their health care, may experience the highest level of supportive care need and intervention. Copyright © 2009 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.     

Psychological distress,quality of life,symptoms and unmet needs of colorectal cancer survivors near the end of treatment

Purpose

This study investigated psychological morbidity, quality of life (QoL), colorectal cancer (CRC)-specific symptoms and supportive care needs in a CRC population at the end of treatment (EOT).

Methods

CRC survivors (n?=?152) completed a post-treatment baseline questionnaire as part of a multisite supportive care randomised controlled trial (SurvivorCare). CRC survivors had completed treatment with curative intent within 0 to 6 months. Measures are as follows: Brief Symptom Inventory 18 (BSI-18) (psychological morbidity), EORTC QLQ-C30 and QLQ-CR29 (QoL and CRC-specific symptoms and problems) and Cancer Survivors’ Unmet Needs (CaSUN) measure with a simplified response format (unmet needs). Linear regression models were used to compare participants’ QoL with a general population sample. Correlation analysis examined associations between psychological morbidity, QoL and CRC-specific symptoms and problems.

Results

Average participant age was 64 years, and 51 % were male. The majority (68 %) had stage 3 disease. In comparison to population norms, CRC survivors had lower depression and anxiety scores (47.4 and 45.6, respectively) but higher somatisation, and lower role, cognitive and social functioning (p?<?0.001). CRC survivors had higher fatigue, nausea/vomiting, appetite loss, diarrhoea and financial problems (all p?<?0.001), as well as pain (p?=?0.002) and constipation (p?=?0.019). CRC-specific psychological scores were positively correlated with all three BSI domain scores, and pain and fatigue symptom scores on the QLQ-C30 while negatively correlated with all five functional scales of the QLQ-C30.

Conclusions

CRC survivors reported good mental health at EOT. Role and social functioning were impaired compared to population norms, possibly related to physical symptoms.

Implications for Cancer Survivors

Findings may help guide consultations with patients and inform the design of more tailored supportive care interventions.Trial registration: ACTRN12610000207011

     

The Needs Assessment for Advanced Cancer Patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. a study of validity, reliability and acceptability

AIMS: To describe the psychometric evaluation of a measure designed to assess the perceived needs of patients with advanced, incurable cancer. METHOD: A questionnaire known as the Needs Assessment for Advanced Cancer Patients (NA-ACP) was developed based on a review of available literature and professional opinion. A sample of 246 patients (consent rate = 59%) completed the NA-ACP, 28 patients completed the acceptability questions, while 41 completed a retest copy of the NA-ACP. The construct validity of the questionnaire was examined via principal components analysis, while reliability was evaluated in terms of the internal consistency of domains and test-retest scores. RESULTS: The principal components analysis revealed seven domains assessing patients' psychological/emotional, medical information/communication, social, symptom, daily living, spiritual and financial needs. The test-retest reliability estimates were within accepted levels, as were all but one of the internal consistency scores. The NA-ACP was highly acceptable for this patient group. CONCLUSION: The NA-ACP is one of the first multi-dimensional instruments specifically designed to assess the needs of patients with advanced, incurable cancer. The present study provides evidence of the NA-ACP's validity, reliability, and acceptability. The NA-ACP has potential applications both as a research tool and within clinical settings.     

Inequalities and Barriers to the Use of Supportive Care Among Young Breast Cancer Survivors: a Qualitative Understanding

The development of supportive care for cancer patients has been shown to have a positive impact on both mortality rates and many aspects of life after cancer, particularly in young women. Meanwhile, there are still numerous inequalities in terms of cancer mortalities and quality of life among cancer survivors in France. The processes leading to unequal access to supportive care services, and the impact this has on the post-treatment period, have been poorly documented, however. The goal of this study was to understand the barriers to using supportive care services among young women breast cancer survivors under the age of 50 and to find out how this can contribute to inequalities. Thirty-six young breast cancer survivors, one third of which deemed socially deprived, were interviewed using a qualitative, inductive approach at two comprehensive care centres in France. Our findings primarily show that there are still a number of barriers to accessing supportive care for a large number of patients. The way information about supportive services is delivered is a major cause of inequalities in the use of these services. The guidance provided does not take into account either the patients’ needs or their capacity to integrate the information and anticipate problems. Certain specific post-treatment issues have yet to be addressed. Some systemic barriers could be lifted by changing the way information on supportive care services is currently organised and thereby prevent the survivorship plans now being implemented in cancer care settings from reinforcing health inequalities.