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.     

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.     

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.     

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.     

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.     

The supportive care needs of carers of people affected by cancer stationed in British Forces Germany

KIDD L., FORBAT L., KOCHEN M. & KEARNEY N. (2010) European Journal of Cancer Care 20 , 212–219 The supportive care needs of carers of people affected by cancer stationed in British Forces Germany Carers are central to the effective support of people affected by cancer. Little is known however about the specific support needs of carers of military personnel. This study aimed to determine the supportive care needs of unpaid carers within British Forces (including military/civilian personnel, their families and dependent adults) currently stationed in Germany. Qualitative semi‐structured interviews were conducted with seven carers (six men and one woman) in three British army garrisons across Germany, to identify core aspects of the experience of caregiving in this environment. Analysis of interviews with carers was based on qualitative thematic and content analysis. Three key themes were identified: (1) impact on carers of their partners being diagnosed with cancer; (2) provision of support; and (3) challenges to accessing and obtaining support. Central issues pivot around the context of working and living in the armed forces and a lack of supportive care infrastructure. While drawing on a small sample size, this study nonetheless identifies that carers of people with cancer within the armed forces, who are stationed in Germany require a specialised and contextually specific set of services to address their supportive care needs.     

Enabling people with dementia to access and receive cancer treatment and care: The crucial role of supportive networks

ObjectivesDespite cancer and dementia being conditions in which prevalence increases with age, there remains limited research on the cancer treatment and care needs of this population. Our study aimed to address this gap and this paper reports on the role of supportive networks in enabling people with dementia to access cancer treatment and care.Materials and methodsAn ethnographic study involving seventeen people with cancer and dementia, 22 relatives and nineteen oncology staff. It comprised observations (46 h) of and informal conversations during oncology appointments attended by people with dementia and their relatives and semi-structured interviews (n = 37) with people living with cancer and dementia, their relatives and staff working in various roles across oncology services. Data were analysed using thematic analysis.ResultsPatients and oncology staff relied on and expected relatives to provide practical and emotional support around cancer treatment and care. Families varied in their ability to provide required support due to extent of the family network, practical issues, knowledge of the patient and their wishes, family conflict and the patient's willingness to accept help. Where no family network was available, support provision was complex and this could compromise access to cancer treatment.ConclusionsPeople with comorbid cancer and dementia rely heavily on a supportive family network to access treatment and care. Oncology services need to assess the supportive networks available to individual patients in developing cancer treatment plans. Urgent consideration needs to be given to how those with no family networks can be appropriately supported.     

Men's help‐seeking in the first year after diagnosis of localised prostate cancer

This study describes sources of support utilised by men with localised prostate cancer in the first year after diagnosis and examines characteristics associated with help‐seeking for men with unmet needs. A cross‐sectional survey of 331 patients from a population‐based sample who were in the first year after diagnosis (M = 9.6, SD = 1.9) was conducted to assess sources of support, unmet supportive care needs, domain‐specific quality of life and psychological distress. Overall, 82% of men reported unmet supportive care needs. The top five needs were sexuality (58%); prostate cancer‐specific (57%); psychological (47%); physical and daily living (41%); and health system and information (31%). Professional support was most often sought from doctors (51%). Across most domains, men who were older (Ps ≤ 0.03), less well educated (Ps ≤ 0.04) and more depressed (Ps ≤ 0.05) were less likely to seek help for unmet needs. Greater sexual help‐seeking was related to better sexual function (P = 0.03), higher education (P ≤ 0.03) and less depression (P = 0.05). Unmet supportive care needs are highly prevalent after localised prostate cancer diagnosis with older age, lower education and higher depression apparent barriers to help‐seeking. Interventions that link across medicine, nursing and community based peer support may be an accessible approach to meeting these needs. Clinical Trial Registry: Trial Registration: ACTRN12611000392965.     

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 perils of a vanishing cohort: a study of social comparisons by women with advanced ovarian cancer

Objective: To examine the role social comparisons play in the experience of ovarian cancer patients and to consider the implications this may have for provision of supportive care services for ovarian cancer patients. Methods: We conducted a longitudinal qualitative study of women with advanced ovarian cancer in Sydney, Australia. Semi‐structured interviews were conducted with women with advanced ovarian cancer over a period of 2.5 years. Social comparisons made by 13 study participants in 33 interviews were extracted and analysed using coding categories based on social comparison theory. Results: Participants favoured downward contrasts and lateral comparisons and avoided downward identifications, upward contrasts and upward identifications. Participants expressed a preference for avoiding contact with ovarian cancer patients, for the company of ‘normal’ others, for normalising information and information that facilitated upward identifications. Conclusions: We suggest that social comparisons made by women with ovarian cancer are influenced by specific clinical factors associated with their diagnosis—in particular, their status as a member of a ‘vanishing cohort’—and argue for further research examining the specific comparison needs and preferences of patients with advanced disease and types of cancer with poor prognoses. Practice implications: These findings raise questions about uniform approaches to the provision of cancer care and suggest that further research may be required to ensure that interventions are appropriately tailored to the supportive care needs of patients with different types and stages of disease. Copyright © 2011 John Wiley & Sons, Ltd.     

Course and predictors of supportive care needs among Mexican breast cancer patients: A longitudinal study

Objective

This study examined the course and predictors of supportive care needs among Mexican breast cancer patients for different cancer treatment trajectories.

Methods

Data from 172 (66.4% response rate) patients were considered in this observational longitudinal study. Participants were measured after diagnosis, neoadjuvant treatment, surgery, adjuvant treatment, and the first post‐treatment follow‐up visit. Psychological, Health System and Information, Physical and Daily Living, Patient Care and Support, Sexual, and Additional care needs were measured with the Supportive Care Needs Survey (SCNS‐SF34). Linear mixed models with maximum‐likelihood estimation were computed.

Results

The course of supportive care needs was similar across the different cancer treatment trajectories. Supportive care needs declined significantly from diagnosis to the first post‐treatment follow‐up visit. Health System and Information care needs were the highest needs over time. Depressive symptoms and time since diagnosis were the most consistent predictors of changes in course of supportive care needs of these patients.

Conclusions

Health system and information care needs of Mexican breast cancer patients need to be addressed with priority because these needs are the least met. Furthermore, patients with high depressive symptoms at the start of the disease trajectory have greater needs for supportive care 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.     

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.     

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps

This article highlights key findings from the “Comprehensive Cancer Care for Children and Their Families” March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality‐of‐life outcomes and well‐being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum. Participants affirmed the triple aim of pediatric oncology that strives for every child with cancer to be cured; provides high‐quality palliative and psychosocial supportive, restorative, and rehabilitative care to children and families throughout the illness course and survivorship; and assures receipt of high‐quality end‐of‐life care for patients with advancing disease. Workshop outcomes emphasized the need for new pediatric cancer drug development and identified critical opportunities to prioritize palliative care and psychosocial support as an integral part of pediatric cancer research and treatment, including the necessity for adequately resourcing these supportive services to minimize suffering and distress, effectively address quality‐of‐life needs for children and families at all stages of illness, and mitigate the long‐term health risks associated with childhood cancer and its treatment. Next steps include dismantling existing silos and enhancing collaboration between clinical investigators, disease‐directed specialists, and supportive care services; expanding the use of patient‐reported and parent‐reported outcomes; effectively integrating palliative and psychosocial care; and clinical communication skills development. CA Cancer J Clin 2016;66:398–407. © 2016 American Cancer Society.     

Experiences and concerns about ‘returning to work’ for women breast cancer survivors: a literature review

Objective: To explore how female breast cancer patients experience work incapacity during the treatment and return‐to‐work phases and how interactions between patients and stakeholders affect this experience. Method: Database search for full text articles published between January 1995 and January 2008 that focused on employed female breast cancer patients, factors related to work incapacity, and returning to work. Only results based on self‐report data were included. Studies focusing on treatment, financial factors, rate of return, or absence were excluded. Results: Six articles met the inclusion criteria. Women with breast cancer receive varied reactions but little advice about returning to work. Women were primarily concerned with disclosing the diagnosis to their employer and to relatives. Uncertainties about physical appearance, ability to work, and possible job loss affected the women's decisions about working during the treatment phase. After treatment, most women wanted to regain their ‘normal life’, but concentration and arm or fatigue problems potentially interfered. Although supportive work environments were helpful, the individual needs of women differed. Employers and employees need to find a balance in defining accommodating work. Many women received favourable support, but some reported feeling discriminated against. Many women re‐evaluated the role of work in their lives after being confronted with breast cancer. Conclusion: Work adjustments could help women to keep their jobs during illness and recovery. To resolve women's concerns about returning to work, employers, physicians, and insurance institutions should consider increasing and improving communication with breast cancer patients and playing a more active and supportive role. Copyright © 2009 John Wiley & Sons, Ltd.     

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.     

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.     

Delivery Models and Health Economics of Supportive Care Services in England: A Multicentre Analysis

AimsImprovements in cancer treatment have led to more people living with and beyond cancer. These patients have symptom and support needs unmet by current services. The development of enhanced supportive care (ESC) services may meet the longitudinal care needs of these patients, including at the end of life. This study aimed to determine the impact and health economic benefits of ESC for patients living with treatable but not curable cancer.Materials and methodsA prospective observational evaluation was undertaken over 12 months across eight cancer centres in England. ESC service design and costs were recorded. Data relating to patients' symptom burden were collected using the Integrated Palliative Care Outcome Scale (IPOS). For patients in the last year of life, secondary care use was compared against an NHS England published benchmark.ResultsIn total, 4594 patients were seen by ESC services, of whom 1061 died during follow-up. Mean IPOS scores improved across all tumour groups. In total, £1,676,044 was spent delivering ESC across the eight centres. Reductions in secondary care usage for the 1061 patients who died saved a total of £8,490,581.ConclusionsPeople living with cancer suffer with complex and unmet needs. ESC services appear to be effective at supporting these vulnerable people and significantly reduce the costs of their care.