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Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey.

ABSTRACT: 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.

SUBMITTER: El Turabi A

PROVIDER: S-EPMC3738115 | biostudies-literature | 2013 Aug

REPOSITORIES: biostudies-literature

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Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey.

El Turabi A A Abel G A GA Roland M M Lyratzopoulos G G

British journal of cancer 20130627 3

<h4>Background</h4>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.<h4>Methods</h4>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 ...[more]

PMID: 23807170

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Project description:BackgroundAlthough research findings consistently find poor communication about medical procedures to be a key predictor of patient complaints, compensation claims, and malpractice lawsuits ("complaints"), there is insufficient evidence to determine if greater patient involvement could actually affect the inclination to complain.ObjectivesWe conducted an experimental case vignette survey that explores whether greater patient involvement in decision-making is likely to influence the intention to complain given different decisions and consequences.MethodsRandomized, national case vignette survey with various levels of patient involvement, decisions, and outcomes in a representative Danish sample of men. We used prostate specific antigen (PSA) screening in men aged 45 to 70 years as the intervention illustrated in 30 different versions of a mock clinical encounter. Versions differed in the amount of patient involvement, the decision made (PSA test or no PSA test), and the clinical outcomes (no cancer detected, detection of treatable cancer, and detection of non-treatable cancer). We measured respondents' inclination to complain about care in response to the scenarios on a 5-point Likert scale (from 1: very unlikely to 5: very likely).ResultsThe response rate was 30% (6,756 of 22,288). Across all scenarios, the likelihood of complaint increased if the clinical outcome was poor (untreatable cancer). Compared with scenarios that involved shared decision-making (SDM), neutral information, or nudging in favor of screening, the urge to complain increased if the patient was excluded from decision-making or if the doctor had nudged the patient to decline screening (mean Likert differences .12 to .16, p < .001). With neutral involvement or nudging in favor of intervention, the desire to complain depended highly on the decision reached and on the patient's course. This dependence was smaller with SDM.ConclusionsGreater patient involvement in decision-making appears to be associated with less intention to complain about health care, with SDM resulting in the greatest reduction in complaint likelihood.

Project description:BackgroundTo describe vascular access (VA)-related decision-making from the patient perspective, in patients who have already chosen hemodialysis as their renal replacement modality, and identify areas where physicians can improve this experience.MethodsIn-person, semi-structured interviews with 15 patients with end-stage kidney disease were systematically analyzed by two independent researchers using thematic analysis. Interviews were conducted until systematic analysis revealed no new themes.ResultsPatients had mean age 57 (range 22-85), with seven males and diverse racial/ethnic/marital status. All (15/15) patients viewed VA as "intertwined and interrelated" with dialysis, prioritized the dialysis, described the VA merely as the "hookup" to life-preserving dialysis and gave it minimal consideration. Three themes were identified: consolidation of dialysis and VA, reliance on supportive advisors and communication with physicians. Although 14/15 patients described processes common to medical decision-making, including information seeking, learning from the experiences of others, and weighing risks and benefits, they did not apply these processes specifically to VA. While all participants took ownership of the VA decision, they lacked clear understanding about the different types of VA and their consequences. Most patients (14/15) depended on family and friends for reinforcement, motivation and advice. Patients all described physician characteristics they associated with trustworthiness, the most common being listening and explaining, demonstrating empathy and making an effort to meet the patient's individual needs. Perceived arrogance, unavailability and lack of expertise represented untrustworthiness. The majority (14/15) accepted VA recommendations from physicians they found trustworthy and authoritative.ConclusionsThe study participants were minimally engaged in VA decision-making. Educational aids and shared decision-making tools are needed to empower patients to make better-informed, self-efficacious VA decisions.

Project description:ImportanceDecisions for older adults (aged ≥65 years) and their clinicians about whether to continue to screen for cancer are not easy. Many older adults who are frail or have limited life expectancy or comorbidities continue to be screened for cancer despite guidelines suggesting they should not; furthermore, many older adults have limited knowledge of the potential harms of continuing to be screened.ObjectiveTo summarize the patient-reported factors associated with older adults' decisions regarding screening for breast, prostate, colorectal, and cervical cancer.Evidence reviewStudies were identified by searching databases from January 2000 to June 2020 and were independently assessed for inclusion by 2 authors. Data extraction and risk of bias assessment were independently conducted by 2 authors, and then all decisions were cross-checked and discussed where necessary. Data analysis was performed from September to December 2020.FindingsThe search yielded 2475 records, of which 21 unique studies were included. Nine studies were quantitative, 8 were qualitative, and 4 used mixed method designs. Of the 21 studies, 17 were conducted in the US, and 10 of 21 assessed breast cancer screening decisions only. Factors associated with decision-making were synthesized into 5 categories: demographic, health and clinical, psychological, physician, and social and system. Commonly identified factors associated with the decision to undergo screening included personal or family history of cancer, positive screening attitudes, routine or habit, to gain knowledge, friends, and a physician's recommendation. Factors associated with the decision to forgo screening included being older, negative screening attitudes, and desire not to know about cancer. Some factors had varying associations, including insurance coverage, living in a nursing home, prior screening experience, health problems, limited life expectancy, perceived cancer risk, risks of screening, family, and a physician's recommendation to stop.Conclusions and relevanceAlthough guidelines suggest incorporating life expectancy and health status to inform older adults' cancer screening decisions, older adults' ingrained beliefs about screening may run counter to these concepts. Communication strategies are needed that support older adults to make informed cancer screening decisions by addressing underlying screening beliefs in context with their perceived and actual risk of developing cancer.

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Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey.

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Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey.

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