Effectiveness and cost-effectiveness of a digital health intervention to support patients with colorectal cancer prepare for and recover from surgery: study protocol of the RecoverEsupport randomised controlled trial.

INTRODUCTION: Surgery is the most common treatment for colorectal cancer (CRC) and can cause relative long average length of stay (LOS) and high risks of unplanned readmissions and complications. Enhanced Recovery After Surgery (ERAS) pathways can reduce the LOS and postsurgical complications. Digital health interventions provide a flexible and low-cost way of supporting patients to achieve this. This protocol describes a trial aiming to evaluate the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention in decreasing the hospital LOS in patients undergoing CRC surgery. METHODS AND ANALYSIS: The two-arm randomised controlled trial will assess the effectiveness and cost-effectiveness of the RecoverEsupport digital health intervention compared with usual care (control) in patients with CRC. The intervention consists of a website and a series of automatic prompts and alerts to support patients to adhere to the patient-led ERAS recommendations. The primary trial outcome is the length of hospital stay. Secondary outcomes include days alive and out of hospital; emergency department presentations; quality of life; patient knowledge and behaviours related to the ERAS recommendations; health service utilisation; and intervention acceptability and use. ETHICS AND DISSEMINATION: The trial has been approved by the Hunter New England Research Ethics Committee (2019/ETH00869) and the University of Newcastle Ethics Committee (H-2015-0364). Trial findings will be disseminated via peer-reviewed publications and conference presentations. If the intervention is effective, the research team will facilitate its adoption within the Local Health District for widespread adaptation and implementation. TRIAL REGISTRATION NUMBER: ACTRN12621001533886.

Prevalence and type of unmet needs experienced by carers of people living with dementia.

OBJECTIVES: Carers of people with dementia experience significant physical, emotional, and social burdens. Needs assessment can provide important information to assist services in providing support to carers to reduce these burdens. However, few studies have examined the prevalence of unmet needs experienced by carers of people with dementia using a quantitative instrument. This study aimed to examine the prevalence and type of unmet needs experienced by carers of people with dementia in Australia. METHODS: This was a cross-sectional survey of carers providing support to community-dwelling individuals living with dementia. Carers were recruited through geriatric clinics, aged care providers, support services and community organisations. Consenting carers completed a survey including an 80-item study-specific unmet needs instrument for carers (UNI-C) and sociodemographic characteristics. Descriptive statistics were used to identify the most prevalent unmet needs reported by carers. RESULTS: A total of 169 carers (response rate 47%) completed the survey. Most (87%) carers reported at least one unmet need. Carers reported a median of 16.0 (IQR = 24.0; max = 58) out of a possible 80 unmet needs. The most frequently endorsed unmet needs spanned a range of areas including emotional wellbeing, accessing health and aged care services, managing apathy, and finding information. CONCLUSION: This study highlighted that a large proportion of carers experience unmet needs associated with caring for someone with dementia. Developing and rigorously testing interventions to meet carers' commonly reported unmet needs are warranted.Supplemental data for this article is available online at https://doi.org/10.1080/13607863.2022.2053833 .

Experiences of Patient-Centered Care Among Japanese and Australian Cancer Outpatients: Results of a Cross-Sectional Study.

There have been few international comparisons of patient-centered cancer care delivery. This study aimed to compare the experiences of patient-centered care (PCC) of Japanese and Australian radiation oncology patients. Participants were adults with cancer attending a radiotherapy appointment at a Japanese or Australian clinic. Participants completed a survey asking about 10 indicators of PCC. Overall, 259 Japanese and 285 Australian patients participated. Compared with Japanese participants, Australian participants were significantly more likely to report receiving information about: what the treatment is, and the short-term and long-term side effects of treatment. A higher proportion of Australian participants reported being asked whether they wanted a friend or family member present at the consultation. There were no differences in the frequency with which Japanese and Australian participants were asked by their clinicians about whether they were experiencing physical side effects or emotional distress. International differences highlight the (1) need to exercise caution when generalizing from one country to another; and (2) the importance of context in understanding PCC delivery and the subsequent design of quality improvement interventions.

The System for Patient Assessment of Cancer Experiences (SPACE): a cross-sectional study examining feasibility and acceptability.

BACKGROUND: Continuous quality improvement in cancer care relies on the collection of accurate data on the quality of care provided. It is suggested that such an approach should: (i) measure the patient's care experience throughout the cancer trajectory; (ii) use items and response scales that measure concrete and specific aspects of care; (iii) minimise recall bias; (iv) minimise the burden placed on patients for providing data; (v) minimise administrative burden; and (vi) collect actionable data. The System for Patient Assessment of Cancer Experiences (SPACE) was developed to meet these objectives. This study describes the feasibility and acceptability of the SPACE in a sample of oncology outpatients. METHODS: The SPACE was examined in four medical oncology centres. Adult patients were approached by a research assistant prior to their scheduled consultation. Consenting participants completed the SPACE on a computer tablet. Items were tailored to the patient's cancer treatment phase. RESULTS: Of the eligible participants, 1143 consented (83%) and 1056 completed the survey (92%). The average time taken to complete the survey was 6 min 28 s. A large proportion of the sample indicated that the survey was acceptable (88-93% across three acceptability items). CONCLUSION: This study demonstrates that the SPACE can be feasibly administered each time a patient comes to the oncology unit and is acceptable to patients. The SPACE could be used to quantify the care experiences which patients receive during their cancer care. The resulting data could be used to set benchmarks and improve the performance of cancer clinics.

Australian GPs' perceptions of barriers and enablers to best practice palliative care: a qualitative study.

BACKGROUND: General Practitioners (GPs) often play an important role in caring for people at the end of life. While some international studies suggest that GPs experience a number of barriers to providing palliative care, little is known about views and experiences of GPs in Australia. This study explored Australian GPs' perceptions of barriers and enablers to the provision of palliative care and provides new insights into how to implement best practice care at the end of life. METHODS: This was a qualitative study using 25 semi-structured phone interviews conducted with GPs practising in metropolitan and non-metropolitan New South Wales, Australia. Data were analysed using qualitative content analysis. RESULTS: GPs reported difficulties with palliative care provision due to i) the complex and often emotional nature of doctor-family-interaction; ii) a lack of evidence to guide care; and iii) the need to negotiate roles and responsibilities within the healthcare team. GPs listed a number of strategies to help deal with their workload and to improve communication processes between healthcare providers. These included appropriate scheduling of appointments, locally tailored mentoring and further education, and palliative care guidelines which more clearly outline the roles and responsibilities within multidisciplinary teams. GPs also noted the importance of online platforms to facilitate their communication with patients, their families and other healthcare providers, and to provide centralised access to locally tailored information on palliative care services. GPs suggested that non-government organisations could play an important role by raising awareness of the key role of GPs in palliative care provision and implementing an "official visitor" program, i.e. supporting volunteers to provide peer support or respite to people with palliative care needs and their families. CONCLUSIONS: This study offers new insights into strategies to overcome well documented barriers to palliative care provision in general practice and help implement optimal care at the end of life. The results suggest that researchers and policy makers should adopt a comprehensive approach to improving the provision of palliative care which tackles the array of barriers and enablers identified in this study.

Systematic review of barriers and enablers to the delivery of palliative care by primary care practitioners.

BACKGROUND: There is increasing demand for primary care practitioners to play a key role in palliative care delivery. Given this, it is important to understand their perceptions of the barriers and enablers to optimal palliative care, and how commonly these are experienced. AIM: To explore the type and prevalence of barriers and enablers to palliative care provision reported by primary care practitioners. DESIGN: A systematic review of quantitative data-based articles was conducted. DATA SOURCES: Medline, Embase and PsychINFO databases were searched for articles published between January 2007 and March 2019. DATA SYNTHESIS: Abstracts were assessed against the eligibility criteria by one reviewer and a random sample of 80 articles were blind coded by a second author. Data were extracted from eligible full-texts by one author and checked by a second. Given the heterogeneity in the included studies' methods and outcomes, a narrative synthesis was undertaken. RESULTS: Twenty-one studies met the inclusion criteria. The most common barriers related to bureaucratic procedures, communication between healthcare professionals, primary care practitioners' personal commitments, and their skills or confidence. The most common enablers related to education, nurses and trained respite staff to assist with care delivery, better communication between professionals, and templates to facilitate referral to out-of-hours services. CONCLUSION: A holistic approach addressing the range of barriers reported in this review is needed to support primary care providers to deliver palliative care. This includes better training and addressing barriers related to the interface between healthcare services.

Development and Validation of the MiPrep Survey: An Instrument Assessing Patients' Perceived Preparation for Medical Interventions Including Medical Imaging, Radiotherapy, and Surgery.

BACKGROUND: Adequately preparing patients for medical interventions is an important component of quality healthcare. Nevertheless, few instruments for assessing patients' preparation exist. OBJECTIVES: To develop a psychometrically rigorous instrument to assess patients' perceptions of the quality of preparation. METHODS: An instrument to measure patients' preparation for medical interventions (MiPrep) was developed and tested with patients undergoing medical imaging, radiotherapy, or surgery. Patients were recruited and asked to complete 2 surveys. Survey A assessed patient and intervention characteristics. Survey B (postintervention) contained MiPrep to assess validity (face, content, and construct) and reliability (internal consistency and test-retest). RESULTS: A total of 869 (85%) patients consented to participate and 551 (63%) returned the postintervention survey. Face and content validity were demonstrated. Exploratory factor analysis identified 2 survey modules: receipt and adequacy of information (2 domains) and overall appraisal of patient-centered care (1 domain). Reliability was evidenced by adequate internal consistency (Cronbach α 0.81-0.89) and item-total correlations higher than 0.20. Nevertheless, individual item test-retest reliability requires further confirmation. The final instrument contained 27 items. CONCLUSIONS: The MiPrep instrument has evidence of being a valid and reliable instrument of preparation for medical interventions. Healthcare providers can use the instrument as a quality assurance tool to identify areas for improvement and areas of excellence in patients' preparation. Future studies should verify these findings in other populations and examine the divergent and predictive validity of the instrument.

Raised Anxiety Levels Among Outpatients Preparing to Undergo a Medical Imaging Procedure: Prevalence and Correlates.

PURPOSE: To examine the percentage of patients with raised state anxiety levels before undergoing a medical imaging procedure; their attribution of procedural-related anxiety or worry; and sociodemographic, health, and procedural characteristics associated with raised state anxiety levels. MATERIALS AND METHODS: This prospective cross-sectional study was undertaken in the outpatient medical imaging department at a major public hospital in Australia, with institutional board approval. Adult outpatients undergoing a medical imaging procedure (CT, x-ray, MRI, ultrasound, angiography, or fluoroscopy) completed a preprocedural survey. Anxiety was measured by the short-form state scale of the six-item State-Trait Anxiety Inventory (STAI: Y-6). The number and percentage of participants who reported raised anxiety levels (defined as a STAI: Y-6 score ≥ 33.16) and their attribution of procedural-related anxiety or worry were calculated. Characteristics associated with raised anxiety were examined using multiple logistic regression analysis. RESULTS: Of the 548 (86%) patients who consented to participate, 488 (77%) completed all STAI: Y-6 items. Half of the participants (n = 240; 49%) experienced raised anxiety, and of these, 48% (n = 114) reported feeling most anxious or worried about the possible results. Female gender, imaging modality, medical condition, first time having the procedure, and lower patient-perceived health status were statistically significantly associated with raised anxiety levels. CONCLUSION: Raised anxiety is common before medical imaging procedures and is mostly attributed to the possible results. Providing increased psychological preparation, particularly to patients with circulatory conditions or neoplasms or those that do not know their medical condition, may help reduce preprocedural anxiety among these subgroups.

Unmet supportive care needs of haematological cancer survivors: rural versus urban residents.

Due to fewer cancer services in rural locations, rural survivors may have unique unmet needs compared to urban survivors. This study compared among rural and urban haematological cancer survivors the most common "high/very high" unmet supportive care needs and the unmet need scores for five domains (information, financial concerns, access and continuity of care, relationships and emotional health). Survivors' socio-demographics, rurality, cancer history and psychological factors associated with each unmet need domain were also explored. A total of 1511 haematological cancer survivors were recruited from five Australian state cancer registries and 1417 (1145 urban, 272 rural) allowed extraction of their residential postcode from registry records. A questionnaire that contained the Survivor Unmet Needs Survey was mailed to survivors. Dealing with feeling tired was the most common "high/very high" unmet need for rural (15.2%) and urban (15.5%) survivors. The emotional health domain had the highest mean unmet need score for rural and urban survivors. Rurality was associated with a decreased unmet emotional health domain score whereas travelling for more than 1 h to treatment was associated with increased unmet financial concerns and unmet access and continuity of care. Depression, anxiety and stress were associated with increased unmet need scores for all five domains. Unmet need domain scores generally did not differ by rurality. Travelling for more than 1 h to treatment was associated with increased unmet need scores on two domains. Telemedicine and increased financial assistance with travel and accommodation may help those travelling long distances for treatment.

Quality of Patient-Centered Care Provided to Patients Attending Hematological Cancer Treatment Centers.

The Institute of Medicine has recommended that improvements are needed in patient-centered care. This study examined hematological cancer patients' perceptions of which aspects of cancer care were being delivered well and areas that required improvement, and whether patient characteristics, or the treatment center they attended, were associated with quality of patient-centered care. Participants were recruited via three Australian hematological cancer treatment centers and completed a paper-and-pen survey assessing sociodemographic, disease, and psychological and treatment characteristics at recruitment. A second survey that contained the Quality of Patient-Centered Cancer Care measure was completed one month after recruitment (n = 215). The most frequently delivered feature of patient-centered cancer care was hospital staff showing respect for patients (91.0%). The area of care reported most commonly as not being delivered was hospital staff helping the patient find other cancer patients to talk to (29.8%). Patients without depression reported higher perceived quality of treatment decision-making, co-ordinated and integrated care, emotional support, follow-up care, respectful communication, and cancer information than patients with depression. The treatment center that was attended was associated only with the quality of cancer information patients received. Privacy issues may hinder staff connecting patients directly but this could be overcome via referrals to cancer organizations that offer peer support services.

Patients' Experiences of Preparation for Radiation Therapy: A Qualitative Study.

PURPOSE/OBJECTIVES: To explore patients' experiences of and preferences for preparation for radiation therapy.
. RESEARCH APPROACH: Qualitative study. 
. PARTICIPANTS: 26 individuals who recently received radiation therapy for cancer. 
. SETTING: One Australian radiation oncology clinic located within a tertiary referral hospital in New South Wales.
. METHODOLOGIC APPROACH: Semistructured interviews were conducted and analyzed based on a qualitative descriptive approach and content analysis of the transcribed interviews.
. FINDINGS: Four main themes related to preparation techniques were identified. CONCLUSIONS: The information gained in this study indicates what strategies may best prepare patients for radiation therapy. 
. INTERPRETATION: Providing patients with information that creates a realistic expectation of what radiation therapy involves both before and after treatment seems particularly important in helping them feel prepared.

Experiences of colorectal cancer patients in the 2-years post-diagnosis and patient factors predicting poor outcome.

PURPOSE: There are few recent longitudinal studies investigating the quality of life of colorectal cancer patients in the early years following diagnosis. This study aimed to (i) compare the health status of people with colorectal cancer less than 1 year from diagnosis with health status 1 year later and (ii) determine the characteristics associated with a change in overall health status. METHODS: The study was conducted as part of a larger trial. Participants (n = 539) were identified via the Victorian Cancer Registry in Australia, completed a computer-assisted baseline telephone interview (including the EQ-5D-3L) within 6-12 months of diagnosis, and mailed a survey 12 months later. RESULTS: At baseline, the majority of participants (55 %) reported some problems, including difficulties in usual activities (26 %), pain or discomfort (25 %), anxiety or depression (23 %) and mobility issues (15 %). Sixty-nine percent had either an unchanged or increased health utility score from baseline to follow-up. The largest proportion reporting an increase in problems between baseline and follow-up related to pain or discomfort (18 %). While visual analogue scale scores indicated a significantly improved health state over time overall, 32 % reported a decreased health utility score from baseline to follow-up. Those aged over 80 years were more likely to report a decreased health utility score compared to 60-80-year-olds. CONCLUSIONS: A sizeable minority of patients experience ongoing problems in their daily lives and should be offered assistance in overcoming disabilities and returning to best possible functioning, particularly older patients who appear to be vulnerable to poor outcomes.

Prevalence and associates of psychological distress in haematological cancer survivors.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

What is generated and what is used: a description of public health research output and citation.

The aim of this short report was to describe the output and citation rates of public health. Data-based publications and literature reviews from the year 2008, and their 5-year citation rates were extracted from 10 randomly selected public health journals. In total, 86.2% of publications were descriptive/epidemiological studies, 56.8% used cross-sectional (56.8%) designs and 77.8% were classified as research translation stage 2. Reviews and publications describing randomized controlled trials were the most highly cited, but were infrequently published. Strategies to address the discordance between public health research output and research citation may improve the impact of public health research.

Preparing patients for medical interventions: A systematic review of the psychometric qualities of published instruments.

OBJECTIVE: Preparing patients for medical interventions improves patient outcomes and is an ethical and legal imperative. This review examines the characteristics and psychometric properties of published instruments which assess patients' preparation for medical interventions. METHODS: Medline, CINAHL, EMBASE and PsycINFO electronic databases were searched from the date of their inception to November 2015. Data-based publications describing the development or validation of a self-report instrument designed to assess the quality of adult patients' perceived preparation for a medical intervention were included. RESULTS: Nine publications described the development or validation of seven instruments which met inclusion criteria. The psychometric qualities of the instruments varied. None met all of the accepted criteria for psychometric rigour. Although the Satisfaction with Cancer Information Profile met the highest number (n=5) of the defined psychometric properties, the study sample size was less than 100. Overall, content validity of the included instruments was the most frequently assessed criteria. CONCLUSION: Few instruments have been specifically developed to assess patients' self-reported preparation for medical interventions. Of the available instruments, none demonstrated adequate rigour across essential psychometric properties. PRACTICE IMPLICATIONS: The need to develop instruments examining patient preparation for medical interventions is apparent given the limitations of the instruments reviewed.

Agreement with evidence for tissue Plasminogen Activator use among emergency physicians: a cross-sectional survey.

BACKGROUND: Emergency department staff play a crucial role in the triage of stroke patients and therefore the capacity to deliver time-dependent treatments such as tissue Plasminogen Activator. This study aimed to identify among emergency physicians, (1) rates of agreement with evidence supporting tissue Plasminogen Activator use in acute stroke care; and (2) individual and hospital factors associated with high agreement with evidence supporting tissue Plasminogen Activator use. METHODS: Australian fellows and trainees of the Australasian College for Emergency Medicine were invited to complete an online cross-sectional survey assessing perceptions of tissue Plasminogen Activator use in acute stroke. Demographic and hospital characteristics were also collected. RESULTS: 429 Australasian College for Emergency Medicine members responded (13% response rate). Almost half (47.2%) did not agree with any statements regarding the benefits of tissue Plasminogen Activator use for acute stroke. Perceived routine administration of tissue Plasminogen Activator by the head of respondents' emergency department was significantly associated with high agreement with the evidence supporting tissue Plasminogen Activator use in acute stroke. CONCLUSIONS: Agreement with evidence supporting tissue Plasminogen Activator use in acute stroke is not high among responding Australian emergency physicians. In order for tissue Plasminogen Activator treatment to become widely accepted and adopted in emergency settings, beliefs and attitudes towards treatment need to be in accordance with clinical practice guidelines.

Development and psychometric evaluation of the Quality of Patient-Centered Cancer Care measure with hematological cancer survivors.

BACKGROUND: The Institute of Medicine (IOM) recommended 6 objectives for achieving patient-centered care. However, most patient-reported outcome measures developed with cancer populations fail to address all 6 patient-centeredness dimensions. The Quality of Patient-Centered Cancer Care (QPCCC) measure was developed on the basis of IOM recommendations, and the measure's validity, reliability, and floor and ceiling effects were examined. METHODS: The development of the QPCCC measure included interviews with hematological cancer survivors and feedback from hematologists and cancer patients. To evaluate the measure's psychometric properties, hematological cancer survivors were identified via 2 cancer registries and were mailed the QPCCC measure. To examine test-retest reliability, a second QPCCC measure was mailed to survivors 7 to 14 days after they had returned the first measure. RESULTS: Overall, 545 hematological cancer survivors completed the 48-item QPCCC measure. Exploratory factor analysis revealed a 10-factor structure with factor loadings > 0.40. The subscales were labeled Treatment Delivery, Treatment Decision Making, Coordinated and Integrated Care, Emotional Support, Timely Care, Follow-Up Care, Respectful Communication, Patient Preferences and Values, Cancer Information, and Equitable Care. The QPCCC measure demonstrated acceptable internal consistency for all subscales (Cronbach's α = .73-.94). When test-retest reliability was assessed, 4 items demonstrated substantial agreement (κ > 0.60), whereas 40 items showed moderate agreement (κ = 0.41-0.60). Ceiling effects were present for 8 subscales. CONCLUSIONS: The QPCCC measure has acceptable face and content validity, construct validity, and internal consistency. However, the measure's discriminant validity and test-retest reliability could be improved. The QPCCC measure could be used to improve patient-centered cancer care.

Prevalence of FOB testing in eastern-Australian general practice patients: what has a national bowel cancer screening program delivered?

ISSUES ADDRESSED: The National Bowel Cancer Screening Program (NBCSP) was introduced in Australia in 2006, offering free immunochemical Faecal Occult Blood Test (FOBT) to persons aged 50, 55 or 65. The study aimed to examine the prevalence of self-reported screening for colorectal cancer (CRC) using the FOBT and factors associated with not having an FOBT. METHODS: A cross-sectional study of Australian general practice patients aged 50 and over with no personal history of CRC completed a health risk survey while waiting for scheduled appointments between November 2010 and November 2011. RESULTS: A total of 5671 patients from 12 practices were approached to participate. Of the 4707 eligible patients (adults attending for care who understood English and were capable of providing informed consent), 4062 (86%) consented to participate, with 2269 eligible to complete the FOBT items. Approximately half (52%) of participants reported ever having an FOBT. More than one-third (39.7%) of the sample reported having an FOBT in the prior three years. Those who recalled receiving a mailed kit as part of the NBCSP were five times more likely to report being screened. Those less likely to report screening were aged 50-59 years, were female and had been diagnosed with a form of cancer other than CRC. CONCLUSIONS: There is justification for the extension of the NBCSP to ensure a majority of the age-appropriate population is screened for CRC. SO WHAT?: Further work is needed to identify whether high rates of screening are achievable using the mailed-kit approach, and how to increase participation by females, those aged 50-69 years and those diagnosed with other cancers.

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

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.