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Age-related sarcoma patient experience: results from a national survey in England.

ABSTRACT: BACKGROUND:Sarcomas are rare, heterogeneous tumours affecting patients of any age. Previous surveys describe that sarcoma patients report a significantly worse experience than those with common cancers. Consequently, Sarcoma UK conducted a national survey and these data were examined for age- and tumour-related differences in patients' experiences. METHODS:Patients were randomly selected from respondents to National Cancer Patient Experience Surveys (n?=?900). Differences between patient groups according to age (Adolescents and Young Adults [AYA] 18-39 years, middle-aged 40-64 years, elderly 65?+?years) and tumour type (soft-tissue [STS] vs. bone]) were analysed with t-tests or chi-square tests. RESULTS:Survey response rate was 62% (n?=?558; STS 75%, bone sarcoma 25%). Delay in diagnosis was reported; 27% patients (n?=?150) waited >?3 months and initial symptoms were incorrectly interpreted; AYA STS patients were significantly more likely to be treated for another condition, or advised that their symptoms were not serious, than older STS patients. Clinical trial participation was low (6%, n?=?35). Symptom burden was high, most commonly daytime fatigue (48%, n?=?277) and pain (44%, n?=?248). AYAs were significantly more likely to report most side-effects and post-treatment concerns than older patients. Elderly patients were more satisfied with the information and emotional support provided than younger patients, however were significantly less likely to be referred to rehabilitation services. CONCLUSIONS:This study identifies significant age-related differences in the sarcoma patient journey, which are not only related to variation in tumour-types. These results provide rationale for adopting an age-specific approach to the management of sarcoma patients in order to improve overall patient experience.

SUBMITTER: Younger E

PROVIDER: S-EPMC6192120 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Age-related sarcoma patient experience: results from a national survey in England.

Younger Eugenie E Husson Olga O Bennister Lindsey L Whelan Jeremy J Wilson Roger R Roast Andy A Jones Robin L RL van der Graaf Winette Ta WT

BMC cancer 20181017 1

<h4>Background</h4>Sarcomas are rare, heterogeneous tumours affecting patients of any age. Previous surveys describe that sarcoma patients report a significantly worse experience than those with common cancers. Consequently, Sarcoma UK conducted a national survey and these data were examined for age- and tumour-related differences in patients' experiences.<h4>Methods</h4>Patients were randomly selected from respondents to National Cancer Patient Experience Surveys (n = 900). Differences between ...[more]

PMID: 30333006

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Project description:BackgroundWe aim to describe the health-related quality of life of informal carers and their experiences of primary care.MethodsResponses from the 2011-12 English General Practice Patient Survey, including 195,364 informal carers, were analysed using mixed effect logistic regressions controlling for age, gender, ethnicity and social deprivation to describe carer health-related quality of life (mobility, self-care, usual activities, pain, and anxiety/depression, measured using EQ-5D) and primary care experience (access, continuity and communication).ResultsInformal carers reported poorer health-related quality of life than non-carers of similar age, gender, ethnicity and social deprivation. Increasing caring commitment was associated with worse EQ-5D scores, with carers of 50+ hours a week scoring 0.05 points lower than non-carers (95 % CI 0.05 to 0.04), equivalent to 18 fewer days of full health annually. Considering each domain of EQ-5D separately, carers of 50+ hours/week were more likely to report pain OR = 1.53 (1.50-1.57), p < 0.0001, and anxiety/depression OR = 1.69 (1.66-1.73), p < 0.0001, than non-carers. Younger carers scored lower on EQ-5D than non-carer peers but the converse was true among over-85s. In the most deprived areas carers reported the equivalent of 37 fewer days of full health annually than carers in the most affluent areas. On average, carers reported poorer patient experiences in all areas of primary care than non-carers (odds ratios 0.84-0.97), with this difference being most marked in the domain of access.ConclusionsInformal carers experience a double disadvantage of poorer health-related quality of life and poorer patient experience in primary care. We find no evidence for health benefits of caregiving. We recommend physicians identify and treat carer health problems, including pain and anxiety/depression, particularly among young, deprived and high time-commitment carers. Improving patient experience for carers, including access to primary care, should be a priority.

Project description:BackgroundThe 2007/8 GP Access Survey in England measured experience with five dimensions of access: getting through on the phone to a practice, getting an early appointment, getting an advance appointment, making an appointment with a particular doctor, and surgery opening hours. Our aim was to identify predictors of patient satisfaction and experience with access to English primary care.Methods8,307 English general practices were included in the survey (of 8,403 identified). 4,922,080 patients were randomly selected and contacted by post and 1,999,523 usable questionnaires were returned, a response rate of 40.6%. We used multi-level logistic regressions to identify patient, practice and regional predictors of patient satisfaction and experience.ResultsAfter controlling for all other factors, younger people, and people of Asian ethnicity, working full time, or with long commuting times to work, reported the lowest levels of satisfaction and experience of access. For people in work, the ability to take time off work to visit the GP effectively eliminated the disadvantage in access. The ethnic mix of the local area had an impact on a patient's reported satisfaction and experience over and above the patient's own ethnic identity. However, area deprivation had only low associations with patient ratings. Responses from patients in small practices were more positive for all aspects of access with the exception of satisfaction with practice opening hours. Positive reports of access to care were associated with higher scores on the Quality and Outcomes Framework and with slightly lower rates of emergency admission. Respondents in London were the least satisfied and had the worst experiences on almost all dimensions of access.ConclusionsThis study identifies a number of patient groups with lower satisfaction, and poorer experience, of gaining access to primary care. The finding that access is better in small practices is important given the increasing tendency for small practices to combine into larger units. Consideration needs to be given to ways of retaining these and other benefits of small practice size when primary care services are reconfigured. Differences between population groups (e.g. younger people, ethnic minorities) may be due to differences in actual care received or different response tendencies of different groups. Further analysis is needed to determine whether case-mix adjustment is required when comparing practices serving different populations.

Project description:ObjectivesTo estimate the prevalence, the frequency and the perpetrators of alcohol-related harm to others (AHTO) and identify factors associated with experiencing harm and aggressive harm.DesignCross-sectional survey.SettingEngland.ParticipantsAdults (general population) aged 16 and over.Outcome measuresPercentage of respondents who experienced harm. Socioeconomic and demographic factors associated with the outcomes. Outcomes were (1) experienced harm/did not experience harm and (2) experienced aggressive harm (physically threatened, physically hurt and forced/pressured into something sexual)/did not experience an aggressive harm (no aggressive harm plus no harm at all).ResultsData to support a response rate calculation were not collected; 96.3% of people surveyed completed the AHTO questions. The weighted sample was 4874; 20.1% (95% CI 18.9 to 21.4, N=980) reported experiencing harm in the previous 12 months and 4.6% (95% CI 4.0 to 5.4, N=225) reported experiencing an aggressive harm. Friends and strangers were the dominant perpetrators. Most harms (74.8%) occurred less than monthly. Factors associated with experiencing harm were: younger age (p<0.001), drinking harmfully/hazardously (p<0.001), white British (p<0.001 compared to other white groups and Asian groups and p=0.017 compared to black groups), having a disability (p<0.001), being educated (p<0.001 compared to no education) and living in private rented accommodation (p=0.004 compared with owned outright). Being in the family stage of life (defined as having children in the household) had significantly lower odds of harm (p=0.006 compared to being single), as did being retired (p<0.001 compared to being employed). Factors associated with experiencing an aggressive harm were similar.ConclusionsThis exploratory study, using data collected through the Alcohol Toolkit Survey, shows that AHTO affects 20.1% of the population of England. Even apparently minor harms, like being kept awake, can have a negative impact on health, while aggressive harms are clearly of concern. Using a standard methodology to measure harm across studies would be advantageous. Policies that focus on alcohol must take into consideration the impact of drinking on those other than the drinker.

Project description:ObjectivesTo describe the current provision of hospital-based liaison psychiatry services in England, and to determine different models of liaison service that are currently operating in England.DesignCross-sectional observational study comprising an electronic survey followed by targeted telephone interviews.SettingAll 179 acute hospitals with an emergency department in England.Participants168 hospitals that had a liaison psychiatry service completed an electronic survey. Telephone interviews were conducted for 57 hospitals that reported specialist liaison services additional to provision for acute care.MeasuresData included the location, service structures and staffing, working practices, relations with other mental health service providers, policies such as response times and funding. Model 2-based clustering was used to characterise the services. Telephone interviews identified the range of additional liaison psychiatry services provided.ResultsMost hospitals (141, 79%) reported a 7-day service responding to acute referrals from the emergency department and wards. However, under half of hospitals had 24 hours access to the service (78, 44%). One-third of hospitals (57, 32%) provided non-acute liaison work including outpatient clinics and links to specialist hospital services. 156 hospitals (87%) had a multidisciplinary service including a psychiatrist and mental health nurses. We derived a four-cluster model of liaison psychiatry using variables resulting from the electronic survey; the salient features of clusters were staffing numbers, especially nursing; provision of rapid response 24?hours 7-day acute services; offering outpatient and other non-acute work, and containing age-specific teams for older adults.ConclusionsThis is the most comprehensive study to date of liaison psychiatry in England and demonstrates the wide availability of such services nationally. Although all services provide an acute assessment function, there is no uniformity about hours of coverage or expectation of response times. Most services were better characterised by the model we developed than by current classification systems for liaison psychiatry.

Project description:Exploring variation in patients' experiences of involvement in treatment decision making can identify groups needing extra support, such as additional consultation time, when considering treatment options.We analysed data from the 2010 English National Cancer Patient Experience Survey, a national survey of all patients attending hospitals in England for cancer treatment over a 3-month period, to examine how experience of involvement in decisions about treatment varied between patients with 38 different primary cancers using logistic regression. We analysed responses from 41?411 patients to a single question examining patient experience of involvement in treatment decision making. We calculated unadjusted odds ratios of reporting the most positive experience between patients of different sociodemographic and tumour characteristics and explored the effects of adjusting for age, gender, ethnicity, deprivation, cancer type and hospital of treatment.Of the 41?441 respondents, 29?776 (72%) reported positive experiences of decision-making involvement. Younger patients reported substantially less positive experiences of involvement in decision making (adjusted OR=0.49 16-24 vs 65-74; P<0.001), as did ethnic minorities (adjusted ORs=0.52, 0.62 and 0.73 for Black, Chinese and Asian vs White patients, respectively; P<0.001). Experience varied considerably between patients with different cancers ( e.g., OR=0.52 for anal and 1.37 for melanoma vs colon cancer; P<0.001), with ovarian, myeloma, bladder and rectal cancer patients reporting substantially worse experiences compared with other patients with gynaecological, haematological, urological and colorectal cancers, respectively. Clustering of different patient groups within hospitals with outlying performance report scores could not account for observed differences.Efforts to improve involvement in treatment decision making can focus on those who report the worst experience, in particular younger patients, ethnic minorities and patients with rectal, ovarian, multiple myeloma and bladder cancer.

Dataset Information

Age-related sarcoma patient experience: results from a national survey in England.

Publications

Age-related sarcoma patient experience: results from a national survey in England.

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