Haematological Cancer Survivors Research Articles

Polypharmacy, limited activity, fatigue and insomnia are the most frequent symptoms and impairments in older hematological cancer survivors (70+): Findings from a register-based study on physical and mental health

Although the median age at cancer diagnosis is about 70 years, few studies have evaluated physical and mental health in older patients. The main objectives of our study are to provide information about depression, functional disabilities and symptom burden in older hematological cancer patients (HCP), compared to a community sample (CS) of older individuals. We conducted a prospective study with interview assessments at a meantime of 26 month (range 1-60) after diagnosis or relapse of hematologic cancer (ICD: C81 - C96). Participants were 70 years or older. We assessed depressive symptoms (GDS-15), comorbid conditions, and physical symptom burden (EORTC QLQ-C30, Geriatric Screening) in comparison to a community sample matched by age and sex. 200 patients (response rate 50.5%, Mean age = 76 years, 64% male) and 225 citizens (response rate 44.5%) were interviewed. HCP were more depressed than CS (GDS-15 Mean-score = 3.0 vs. 2.3; p = 0.006). Both HCP and CS had an average of 5 comorbid conditions. In comparison to CS, HCP were found to have higher levels of polypharmacy and limited activity, higher prevalence in polyneuropathy, and higher symptom burden of fatigue, insomnia, and appetite loss. The comorbidity-index was particularly high in older patients, in patients with low education level as well as in patients with a high depression-score. Older HCP are at increased risk for depression and a variety of physical impairments compared to control population. Specific knowledge about disabilities and symptom burden could help to develop adequate survivorship-programs in this group of patients.

A national study of the unmet needs of support persons of haematological cancer survivors in rural and urban areas of Australia

PurposeThis study aimed to compare support persons of haematological cancer survivors living in rural and urban areas in regard to the type, prevalence and factors associated with reporting unmet needs.MethodsOne thousand and four (792 urban and 193 rural) support persons of adults diagnosed with haematological cancer were recruited from five Australian state population-based cancer registries. Participants completed the Support Person Unmet Needs Survey (SPUNS) that assessed the level of unmet needs experienced over the past month across six domains.ResultsOverall, 66% of support persons had at least one ‘moderate, high or very high’ unmet need and 24% (n = 182) reported having multiple (i.e. 6 or more) ‘high/very high’ unmet needs in the past month. There were no significant differences between rural and urban support persons in the prevalence of multiple unmet needs or mean total unmet needs scores. There were however significant differences in the types of ‘high/very high’ unmet needs with support persons living in rural areas more likely to report finance-related unmet needs. Support persons who indicated they had difficulty paying bills had significantly higher odds of reporting multiple ‘high/very high’ unmet needs.ConclusionsThis is the first large, population-based study to compare the unmet needs of support persons of haematological cancer survivors living in rural and urban areas. Findings confirm previous evidence that supporting a person diagnosed with haematological cancer correlates with a high level of unmet needs and highlight the importance of developing systemic strategies for assisting support persons, especially in regard to making financial assistance and travel subsidies known and readily accessible to those living in rural areas.

Long-term effects and psychological adjustment: study protocol of a large register-based study on quality of life among survivors of hematological malignancies

BackgroundBoth incidence and survival rates of hematological cancers are increasing, leading to a growing number of survivors with specific late and long-term effects. However, relevant research in physical, psychological and social aspects of quality of life is scarce. Existing literature shows that a considerable number of cancer survivors report a relatively high quality of life despite a variety of adverse and persistent symptoms. To date, the reasons for this phenomenon as well as moderating and mediating factors are widely unknown. Given these research gaps, we aim to investigate the different domains of quality of life among long-term survivors of hematological cancers and to identify factors predicting high quality of life.Methods/DesignThis is a large cross-sectional study among hematological cancer survivors at a minimum of 3 years after diagnosis. We will collect 1000 survivors completing a set of self-report-questionnaires encompassing physical, psychological and social domains of quality of life. Participants are clustered in groups according to time since diagnosis and compared with each other. Furthermore, survivors will be compared with the general population. Factors predicting high quality of life will be identified via multiple regression analyses and structure equation modeling.DiscussionOur study will help to inform health care providers about the specific long-term burden among survivors with hematological malignancies. Identification of factors predicting high quality of life will help to develop adequate intervention strategies to enhance well-being in hematological cancer survivors. Our methodological advantages including the large sample as well as the assessment of different domains of quality of life will ensure novel and robust results. A limitation of the study is the cross-sectional design.

Who are the support persons of haematological cancer survivors and how is their performance perceived?

To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly. This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population-based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person. A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as "not well/somewhat well." Health care providers should consider providing additional education and skills-based interventions to support persons who experience increased symptoms of depression.

Dyadic interdependence of psychosocial outcomes among haematological cancer survivors and their support persons.

This study aimed to explore the dyadic relationships between unmet need, depression, and anxiety in people diagnosed with haematological cancer and their support persons. Adult survivors (18years+) who had been diagnosed with a haematological cancer were recruited to a cross-sectional mailed survey via five state cancer registries in Australia. Participating survivors invited a support person to also complete a survey. Structural equation modelling was used to explore the relationships among survivor and support person self-reported depression, anxiety, and unmet needs. Of the 4299 eligible haematological cancer survivors contacted by the registries, 1511 (35%) returned a completed survey as did 1004 support persons. There were 787 dyads with complete data. After adjusting for age, gender, rurality, cancer type, and whether the support person was a relative, positive correlations were found between survivor and support person scores for depression (p=0.0029) and unmet needs (p<0.001), but not anxiety scores (p=0.075). Survivor unmet needs were significantly related to support person depression (p=0.0036). Support person unmet needs were significantly related to a higher depression score for survivors (p=0.0067). Greater support person unmet needs were significantly related to a higher anxiety score for survivors (p=0.0083). Survivor unmet needs did not have a significant relationship to support person anxiety (p=0.78). Unmet needs may mediate the interdependence of psychosocial experiences for survivors and support persons, although a longitudinal study is required to confirm causality. Addressing unmet needs may be a potential target for improving outcomes for both groups.

Psychological morbidity among Australian rural and urban support persons of haematological cancer survivors: Results of a national study.

To compare the prevalence of anxiety, depression, and stress among rural and urban support persons of haematological cancer survivors and explore factors associated with having one or more of these outcomes. Haematological cancer survivors were identified via 1 of 5 state-based cancer registries and invited to take part in a survey. Those who agreed were asked to pass on a questionnaire package to their support person. Measures included the Depression, Anxiety, and Stress Scale, Support Persons' Unmet Need Survey, and sociodemographic questions. Nine-hundred and eighty-nine (66%) participating survivors had a participating support person. There were no significant differences in the proportion of urban versus rural support persons who reported elevated levels of depression (21% vs 23%), anxiety (16% vs 17%), or stress (16% vs 20%), P>.05. Odds of reporting at least 1 indicator of psychological morbidity increased by 10% to 17% for each additional high or very high unmet need and by 2% for those who had relocated from their usual place of residence for the survivor to receive treatment and was decreased by 5% to 54% for those support persons who reported that they had no chronic health conditions. Psychological outcomes for rural and urban support persons are similar. Those who have poor health, have had to relocate, and who have multiple unmet needs are particularly vulnerable to poor psychological outcomes. These factors should be assessed to enable early intervention for those at risk of poor outcomes.

Unmet psychosocial supportive care needs and psychological distress in haematological cancer survivors: The moderating role of psychological flexibility

BackgroundThe period immediately after the end of cancer treatment is a time when supportive care for the cancer patient decreases; this is known to increase risk of psychological distress and poor wellbeing. While there is broad recognition that unmet psychological and supportive care needs correlate with psychological wellbeing, little is understood about the factors that influence this relationship. This study explores the role of psychological flexibility, with a particular focus on its potential moderating role between unmet needs and psychological distress in haematological cancer survivors. Materials and methodHaematological cancer survivors were recruited for this cross-sectional study through two major UK blood cancer charities. Participants (n=91) were all over the age of 16 and had been diagnosed with any sub-type of haematological cancer more than 18 months previously. Participants completed self-report questionnaires assessing unmet psychological and supportive care needs (SCNS SF34), anxiety and depression (HADS), quality of life (EORTC QLQ-C30) and psychological flexibility (AAQ II). ResultsHigh levels of both unmet need and distress were present in the sample, indicating on-going care needs for these cancer survivors. Statistically significant correlations between unmet needs, psychological flexibility and all outcome variables (anxiety, depression, quality of life) were found. Using regression analysis based on Hayes’ methodology (Hayes, 2013), psychological flexibility was found to act as a moderator between unmet need and distress in four out of 15 models; specifically, the statistical relationship between need and distress emerged only when levels of psychological flexibility were at average level or above. DiscussionHaematological cancer survivors have on-going supportive care needs that persist well beyond the end of active treatment. Unmet needs can, in turn, increase levels of anxiety and depression, and reduce quality of life in this patient group. The understanding offered by our data that psychological flexibility plays a moderating relationship between need and psychological distress creates opportunities for the development of theoretically-informed interventions to reduce both unmet need and distress in cancer patients. As such, these findings support the growing emphasis on Acceptance and Commitment based interventions for cancer patients.

Psychosocial distress in haematological cancer survivors: An integrative review.

Haematological cancers are becoming more prevalent, however, survival is also increasing. Many survivors are faced with psychosocial issues after treatment ends, and they may not receive the support they need. This review aims to examine peer reviewed literature reporting psychosocial distress faced by haematological cancer survivors in the early post-treatment period. Database and hand searches were conducted between August and September 2015, with no year restriction. Eligible studies were those reporting on psychosocial sequelae in haematological cancer survivors up to 5years post-treatment. The search yielded 512 studies, of these only seven (five quantitative and two qualitative) included data that addressed psychosocial distress in early post-treatment haematological cancer survivors. Data were thematically analysed to explore the presence and nature of distress. Most studies reported mild to moderate distress for survivors, with some evidence that younger age was an indicator of increased distress. However, predominately this review identified a gap in current literature regarding distress among this group of survivors. More research is needed to address the psychosocial issues facing this growing survivor group, to enable them to receive the support required to maintain good physical and psychological health in this period of the cancer trajectory and into the future.

How can we help haematological cancer survivors cope with the changes they experience as a result of their cancer?

Haematological cancer often necessitates that individuals make significant lifestyle and behaviour changes to protect themselves against infections. It is essential that haematological cancer survivors receive the support and information they require to adjust to such changes. This cross-sectional survey of 259 haematological cancer survivors found that over two thirds of haematological cancer survivors would like to receive more detailed information or help with: diet and nutrition that takes into account their diagnosis and treatment, how to manage the symptoms from the cancer and/or treatment, signs and symptoms to be aware of that may indicate a possible infection and appropriate exercise. Over a third of survivors reported that they had to make changes to reduce their chance of infection, with social restriction the most commonly reported area of change survivors made. Improving communication and access to care and providing additional emotional support may assist survivors in making these additional changes. Healthcare providers should use this information to better support haematological cancer survivors in dealing with the effects haematological cancer has on their life.

Prevalence and associates of psychological distress in haematological cancer survivors.

To explore outcomes of psychological distress, including anxiety, depression and stress, amongst adult haematological cancer survivors, with a specific focus on potential differences between rural and urban survivors. One thousand four hundred fourteen urban and rural survivors were recruited from five Australian population-based cancer registries and completed a self-report pen-and-paper survey on their well-being, including the Depression Anxiety and Stress Scale 21-item version. A quarter of survivors were identified as reporting above normal levels of anxiety and depression, respectively, and almost one fifth (17%) reported above normal levels of stress. There were no statistically significant differences in the percentage of rural and urban survivors reporting above normal levels of anxiety, depression, or stress. Survivors who had experienced financial burden due to their cancer or were of middle age had higher odds of reporting multiple domains of psychological distress, compared to their counterparts. Haematological cancer survivors diagnosed during middle age or who experience increased financial burden as a result of their diagnosis may require additional support and care with regards to psychological distress.

Are Australian clinicians monitoring medication adherence in hematological cancer survivors? Two cross-sectional studies

BackgroundHematological cancer survivors are growing in number and increasingly rely on oral therapy. Given known poor outcomes associated with non-adherence and previous evidence that many patients do not fully adhere to their treatment regimen, this study aimed to determine the degree to which clinicians monitor adherence to oral medication in hematological cancer survivors.MethodsData was combined from two cross-sectional surveys of a heterogeneous sample of 431 hematological cancer survivors recruited from three outpatient hematology clinics in three different states (n = 215) and one state cancer registry (n = 216) in Australia. Participants completed a self-administered survey that included demographic characteristics and a 7-item measure of medication adherence developed by the researchers specifically for the purpose of the studies.ResultsOf the 431 participants, 37 % (n = 160) reported currently taking daily cancer-related medication. Of these, 14 % (n = 23) were found to be non-adherent with ‘missing a dose’ being the most commonly reported non-adherent behaviour. Only 41 % of survivors indicated that their hematologist or cancer clinician had ‘always’ asked about their cancer-related medication during their last six visits.ConclusionsNon-adherence to oral therapy remains a problem in hematological cancer survivors, yet clinicians in Australia do not appear to be regularly monitoring adherence in their patients. Given an increasing dependence on oral therapy in clinical hematology and medical oncology and the importance of medication adherence to optimising health outcomes, greater effort should be invested in developing effective interventions to improve support and adherence monitoring by cancer clinicians and GPs.

What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs.

BackgroundThis study aimed to identify the most prevalent unmet needs of haematological cancer survivors.MethodsHaematological cancer survivors aged 18–80 years at time of recruitment were selected from four Australian state cancer registries. Survivors completed the Survivor Unmet Needs Survey. The most frequently reported “high/very high” unmet needs items were identified, as well as characteristics associated with the three most prevalent “high/very high” unmet needs reported by haematological cancer survivors.ResultsA total of 715 eligible survivors returned a completed survey. “Dealing with feeling tired” (17%), was the most frequently endorsed “high/very high” unmet need. Seven out of the ten most frequently endorsed unmet needs related to emotional health. Higher levels of psychological distress (e.g., anxiety, depression and stress) and indicators of financial burden as a result of cancer (e.g., having used up savings and trouble meeting day-to-day expenses due to cancer) were consistently identified as characteristics associated with the three most prevalent “high/very high” unmet needs.ConclusionsA minority of haematological cancer survivors endorsed a “high/very high” unmet need on individual items. Additional emotional support may be needed by a minority of survivors. Survivors reporting high levels of psychological distress or those who experience increased financial burden as a result of their cancer diagnosis may be at risk of experiencing the most prevalent “high/very high” unmet needs identified by this study.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses.

Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n = 136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified: the first relating to the challenges nurses face in providing care ('care challenges') and the second relating to the challenges of providing survivorship care within contemporary health care systems ('system challenges'). Cancer nurses perceive the nature of haematological cancer and its treatment and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Addressing the issues identified will facilitate cancer nurses' provision of survivorship care and help address haematological survivors' needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Provision of survivorship care for patients with haematological malignancy at completion of treatment: A cancer nursing practice survey study

PurposeMany haematological cancer survivors report long-term physiological and psychosocial effects, which persist far beyond treatment completion. Cancer services have been required to extend care to the post-treatment phase to implement survivorship care strategies into routine practice. As key members of the multidisciplinary team, cancer nurses' perspectives are essential to inform future developments in survivorship care provision. MethodsThis is a pilot survey study, involving 119 nurses caring for patients with haematological malignancy in an Australian tertiary cancer care centre. The participants completed an investigator developed survey designed to assess cancer care nurses' perspectives on their attitudes, confidence levels, and practice in relation to post-treatment survivorship care for patients with a haematological malignancy. ResultsOverall, the majority of participants agreed that all of the survivorship interventions included in the survey should be within the scope of the nursing role. Nurses reported being least confident in discussing fertility and employment/financial issues with patients and conducting psychosocial distress screening. The interventions performed least often included, discussing fertility, intimacy and sexuality issues and communicating survivorship care with the patient's primary health care providers. Nurses identified lack of time, limited educational resources, lack of dedicated end-of-treatment consultation and insufficient skills/knowledge as the key barriers to survivorship care provision. ConclusionCancer centres should implement an appropriate model of survivorship care and provide improved training and educational resources for nurses to enable them to deliver quality survivorship care and meet the needs of haematological cancer survivors.

The quality of patient-centred care: haematological cancer survivors' perceptions.

Patient-reported outcome measures (PROMs) that assess the quality of patient-centred cancer care have failed to measure all six patient-centredness dimensions endorsed by the Institute of Medicine (IOM). This study is the first to use the Quality of Patient-Centered Cancer Care (QPCCC) measure that covers all six IOM patient-centredness dimensions to examine haematological cancer survivors' perceptions of care and characteristics associated with perceived quality of care. Haematological cancer survivors diagnosed in the last 6 years and aged 18-80 years were recruited from two Australian state population-based cancer registries. Survivors were mailed the 48-item QPCCC measure. Overall, 545 haematological cancer survivors completed the measure. Areas of care most commonly identified as delivered were hospital staff showing respect to survivors (93%) and making sure the correct treatment was received (93%). Aspects of care most frequently nominated as not delivered were hospital staff helping family and friends (34%) or the survivor (32%) to find other people with similar experiences to talk to. Characteristics associated with survivors perceiving higher quality care was delivered included being employed, having private health insurance, being younger, a Non-Hodgkin lymphoma diagnosis and more recent diagnosis. Being depressed or stressed was associated with perceived lower quality of care. Provision of peer support programs that allow haematological cancer survivors and families and friends to talk to others in similar situations could be improved. Using PROMs to identify areas where cancer survivors perceive improvements are needed is essential to quality improvement efforts.

Factors associated with haematological cancer survivors experiencing a high level of unmet need across multiple items of supportive care: a cross-sectional survey study.

This study aimed to identify subgroups of haematological cancer survivors who report a "high/very high" level of unmet need on multiple (≥7) items of supportive care. Haematological cancer survivors, aged 18 to 80 years at recruitment were selected from four Australian state-based cancer registries. Eligible survivors were sent a survey containing the Survivor Unmet Needs Survey (SUNS). Logistic regression analysis was used to identify characteristics associated with haematological cancer survivors reporting a "high/very high" level of unmet need on ≥7 items of the SUNS. Of the 696 survivors included in this study, 175 (n = 25 %) reported a "high/very high" level of unmet need on seven or more items of the SUNS. Survivors who: had relocated due to their cancer (OR: 2.04; 95 % CI: 1.18, 3.52), had difficulty paying bills (OR: 2.42; 95 % CI: 1.34, 4.38), had used up their savings as a result of cancer (OR: 1.90; 95 % CI: 1.06, 3.40), and were classified as having above normal symptoms of depression (OR: 3.65; 95 % CI: 2.17, 6.15) and stress (OR: 5.94; 95 % CI: 3.22, 10.95) on the Depression Anxiety and Stress Scale-21 (DASS-21) had statistically significantly higher odds of reporting seven or more "high/very high" unmet needs. Additional and intensive supportive care may be needed for this subgroup of haematological cancer survivors experiencing multiple "high/very high" unmet needs. Assistance with accessing relevant financial support and highly accessible services that provide emotional and information support, such as online and telephone peer support programs may prove beneficial in addressing the needs of this subgroup of haematological cancer survivors. It is suggested that future, methodologically rigorous intervention studies assess such strategies.

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

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.

Psychosocial factors associated with impact of cancer in longterm haematological cancer survivors

To assess the impact of cancer (IOC) on subsequent quality of life (QOL), 718 long-term haematological cancer survivors completed validated psychosocial, functional and QOL scales, including IOC. Fifteen percent reported significant psychological distress, 18% high levels of fatigue and 10% moderate to severe functional impairment. These groups of participants also showed poorer QOL. There were no significant differences in psychological distress (P = 0·76), fatigue (P = 0·23) or functional impairment (P = 0·74) across different cancer subtypes. Two separate hierarchical regression analyses examined the combined association of disease-type, psychosocial and other factors on negative and positive IOC scores respectively. Higher negative IOC scores were significantly associated (P ≤ 0·001) with medical comorbidity, psychological distress, lower social support, high fatigue levels and functional impairment. Paediatric patients (diagnosed at <17 years) had significantly higher negative IOC scores than adult patients (P = 0·001); greater years since diagnosis was significantly (P < 0·001) associated with less negative IOC. Higher positive IOC was associated with acute leukaemia (P = 0·01); lower positive IOC with paediatric patients (P < 0·001), white ethnicity (P < 0·001), higher education (P = 0·003), no partner (P = 0·01) and lower social support (P = 0·01). Screening for medical comorbidity, psychological distress and fatigue identifies those needing most support and should allow earlier interventions to address negative and positive IOC to improve the well-being of cancer survivors.

Psychosocial Factors and Impact Of Cancer In British Long-Term Haematological Cancer Survivors

BackgroundLong-term cancer survivors can experience a variety of adverse physical late effects of cancer therapy. However, psychological, e.g. depression and anxiety, and social problems can also have profoundly adverse effects on patients' quality of life (QOL) that may not be adequately addressed in the management of long-term survivors.This study examines the effect and interaction of several disease-related, social and psychological factors on QOL in 718 British long-term haematological cancer survivors (5-40 years), who had all been treated at a single centre over 50 years. Objectives(1) to measure the prevalence of psychological distress (depression, anxiety), functioning, and fatigue in this survivor group compared to rates in the UK population and other survivor groups,(2) to investigate the effect of cancer and cancer treatment on QOL and psychological and social functioning,(3) to identify psychosocial factors associated with poorer QOL outcome. Patients and MethodsEthical approval obtained from the National Research Ethics Service Ref: 11/NE/0095All patients, aged ≥18 years at time of entry into study, with a confirmed diagnosis of haematological malignancy and alive ≥5 years since initial diagnosis, and who had received treatment at St. Bartholomew's Hospital, London (n=1,279) were sent a questionnaire comprising questions on physical health and validated psychosocial, functional and QOL scales, including negative and positive impact of cancer (IOC). Responses were received from 718 (response rate = 56%) patients (280 Hodgkin's Lymphoma (HL), 326 Non-Hodgkin's lymphoma (NHL) [109 Diffuse Large B- Lymphoma (DLBCL), 128 Follicular Lymphoma (FL), 89 other NHL (ONHL)], and 112 Acute Leukaemia (AL)). Statistical AnalysisQOL measures were compared to normal population and other cancer survivor groups. Two separate hierarchical regression analyses were conducted to examine the combined association of the disease type, socio-demographics, psychological and other factors, including cancer recurrence, on negative and positive IOC scores respectively. ResultsSurvivors had poorer QOL than the general population and 15% had levels of psychological distress indicative of a clinical depressive disorder, 18% high levels of fatigue and 10% moderate to severe impairment in functioning; all these groups showed poorer QOL. There were no statistically significant differences in psychological distress (P=0.76), fatigue levels (P=0.23) or levels of functioning (P=0.74) across different cancer diagnostic groups.Higher Negative IOC scores were significantly associated (P<0.001) with the presence of medical comorbidity, depression, low or medium level of social support, a high level of fatigue and functional impairment. Greater age at diagnosis and number of years since diagnosis were significantly (P<0.001) associated with less negative IOC. Higher positive impact scores were associated with an AL diagnosis (P=0.01) ; lower positive IOC scores were associated with white ethnicity (P<0.001), a high level of education (P=0.003), not having a partner (P=0.01), depression(P=0.04), and a low level of social support (P=0.01). ConclusionThe impact of cancer on survivors' lives is influenced by a variety of factors. By using a simple means of screening for medical comorbidity, depression and fatigue the group that needs most support could be identified early, allowing appropriate interventions to improve QOL-related measures and promote well-being by addressing both negative and positive impact of cancer. AcknowledgmentsWe are grateful for the support ofMacmillan Cancer SupportGreg Woolf FoundationCancer Research UKBarts and The London NHS Trust Disclosures:No relevant conflicts of interest to declare.

Access to Care and Impacts of Cancer on Daily Life: Do They Differ for Metropolitan Versus Regional Hematological Cancer Survivors?

Little is known about access to care for hematological cancer patients. This study explored patient experiences of barriers to accessing care and associated financial and social impacts of the disease. Metropolitan versus nonmetropolitan experiences were compared. A state-based Australian cancer registry identified adult survivors of hematological cancers (including lymphoma, leukemia and myeloma) diagnosed in the previous 3 years. Survivors were mailed a self-report pen and paper survey. Of the 732 eligible survivors, 268 (37%) completed a survey. Forty percent of participants reported at least one locational barrier which limited access to care. Only 2% reported cancer-related expenses had restricted their treatment choices. Almost two-thirds (64%) reported at least one financial or social impact on their daily lives related to cancer. The most frequently reported impacts were the need to take time off work (44%) and difficulty paying bills (21%). Survivors living in a nonmetropolitan location had 17 times the odds of reporting locational or financial barriers compared with those in metropolitan areas. Preferred potential solutions to alleviate the financial and social impacts of the disease were: free parking for tests or treatment (37%), free medications or treatments (29%), and being able to get treatment in their local region (20%). Providing more equitable access to care for hematological cancer patients in Australia requires addressing distances traveled to attend treatment and their associated financial and social impacts on nonmetropolitan patients. Greater flexibility in service delivery is also needed for patients still in the workforce.