Development and evaluation of a new survey instrument to measure the quality of colorectal cancer screening decisions

Background: Guidelines for colorectal cancer screening recommend that patients be informed about options and be able to select preferred method of screening; however, there are no existing measures available to assess whether this happens. Methods: Colorectal Cancer Screening Decision Quality Instrument (CRC-DQI) includes knowledge items and patients' goals and concerns. Items were generated through literature review and qualitative work with patients and providers. Hypotheses relating to the acceptability, feasibility, discriminant validity and retest reliability of the survey were examined using data from three studies: (1) 2X2 randomized study of participants recruited online, (2) cross-sectional sample of patients recruited in community health clinics, and (3) cross-sectional sample of providers recruited from American Medical Association Master file. Results: 338 participants were recruited online, 94 participants were recruited from community health centers, and 115 physicians were recruited. The CRC-DQI was feasible and acceptable with low missing data and high response rates for both online and paper-based administrations. The knowledge score was able to discriminate between those who had seen a decision aid or not (84% vs. 64%, p < 0.001) and between providers, online patients and clinic patients (89% vs. 74% vs. 41%, p < 0.001 for all comparisons). The knowledge score and most of the goals had adequate retest reliability. About half of the participants received a test that matched their goals (47% and 51% in online and clinic samples respectively). Many respondents who had never been screened had goals that indicated a preference for colonoscopy. A minority of respondents in the online (21%) and in clinic (2%) samples were both well informed and received a test that matched their goals. Conclusions: The CRC-DQI demonstrated good psychometric properties in diverse samples, and across different modes of administration. Few respondents made high quality decisions about colon cancer screening

Health-related quality of life and costs in breast, prostate and colorectal cancer : a special focus on colorectal cancer

Background and aims Cancer is a huge burden to patients, families and to societies in both human and monetary terms. Breast (BC), prostate (PC) and colorectal (CRC) cancer are the three most common cancer types in Finland. Due to improved survival, health-related quality of life (HRQoL) aspects are gaining increasing attention in cancer care. Understanding the cost and HRQoL consequences of different treatment choices is critical to be able to use scarce health-care resources optimally. The aims of this thesis were to evaluate costs and patient-reported HRQoL using three standard instruments (15D, EQ-5D-3L+VAS and EORTC QLQ-C30) in all phases of CRC, to assess HRQoL among end-stage BC, PC and CRC patients, and to assess the direct economic burden of BC, PC and CRC for patients and analyse what are its implications for HRQoL. Patients and methods A total of 1978 cancer patients from the Helsinki and Uusimaa region having either BC (840), PC (630) or CRC (508) participated in this observational cross-sectional study. Patients were recruited between 2009 and 2011 from different phases of the disease and divided into five mutually exclusive groups according to the stage of their disease: primary treatments; rehabilitation; remission; metastatic disease; and palliative care. Patients completed a questionnaire, which in addition to the HRQoL questionnaires, enquired about demographic factors, health care and informal care resource utilization and work capacity. Furthermore, data on direct medical resource use in both primary and secondary care and productivity costs were obtained from several different registries. Multivariate regression modelling was used to find determinants of deteriorated HRQoL and cost drivers. Results The HRQoL of CRC patients is fairly good compared to age-, gender- and education-standardized general population except for those under palliative care. The 15D gave highest scores across all states compared to EQ-5D and VAS. Fatigue, pain, age and financial difficulties were strongly associated with impaired HRQoL. The total six-month costs of CRC varied between disease states from €2106 in rehabilitation to €22,200 in the primary treatment state. The costs were highest at the beginning and in the advanced phases of the disease. Most of the CRC-related costs were direct medical costs. Productivity costs were highest in the primary treatment state (40%) and informal care costs highest in the palliative phase (33%). Outpatient medication was responsible for the major part of patients’ out-of-pocket (OOP) payments. High OOP payments were associated with financial difficulties and deteriorated HRQoL. Conclusions All instruments were applicable for the evaluation of HRQoL of cancer patients in all states of the disease, however the results the different instruments provided varied significantly. Cost of CRC is driven by direct health-care costs in the intense primary care and metastatic phase. Financial difficulties are a substantial burden to some and they have a clear negative impact on patients’ HRQoL. Outcomes and costs of the care should be measured routinely in health care to ensure scare resources are used to maximize patients’ health.Tutkimuksen tausta ja tavoitteet Syöpä on globaalisti valtava haaste: siitä aiheutuu niin potilaille, läheisille kuin yhteiskunnille merkittävää inhimillistä ja taloudellista rasitusta. Rinta-, eturauhas- ja kolorektaalisyöpä ovat kolme yleisintä syöpätyyppiä Suomessa. Syövän parantuneen ennusteen myötä terveyteen liittyvä elämänlaatu on tullut yhä tärkeämmäksi asiaksi syövän hoidossa. Jotta terveydenhuollon rajallisia resursseja voidaan kohdentaa mahdollisimman tehokkaasti, tulee ymmärtää käytettävissä olevien hoitojen kustannus- ja elämänlaatuvaikutukset. Tämän väitöskirjatutkimuksen tavoitteena oli selvittää kolmea yleisesti käytettyä elämänlaatumittaria (15D, EQ-5D-3L+VAS and EORTC QLQ-C30) hyödyntäen kolorektaalisyöpäpotilaiden elämänlaatu ja kustannukset taudin eri vaiheissa diagnoosista palliatiiviseen hoitovaiheeseen saakka, arvioida rinta-, eturauhas- ja kolorektaalisyöpäpotilaiden loppuvaiheen elämänlaatua ja selvittää syöpäpotilaille sairaudesta aiheutuvia kustannuksia ja taloudellisten vaikeuksien vaikutusta. Potilaat ja menetelmät Kaikkiaan 1978 rinta-, eturauhas- ja kolorektaalisyöpäpotilasta HUS:n alueelta osallistui tähän havainnoivaan poikkileikkaustutkimukseen vuosina 2009-2011. Potilaat rekrytoitiin taudin eri vaiheista ja jaettiin syövittäin viiteen eri ryhmään: primaarihoidot, kuntoutumisvaihe, remissio, metastaattinen vaihe ja palliatiivinen vaihe. Potilaskyselyssä potilaita selvitettiin elämänlaatukyselyiden lisäksi demografisia taustatietoja, terveydenhuollon ja epävirallisten palveluiden käyttöä ja työkykyä. Lisäksi tietoa potilaiden terveydenhuollon käytöstä saatiin yhdistelemällä erikoissairaanhoidon, perusterveydenhuollon ja KELA:n rekisteritietoja. Monimuuttuja-analyysin avulla pyrittää löytämään elämänlaadun tai kustannusten vaihtelua selittäviä tekijöitä. Tulokset Kolorektaalisyöpäpotilaiden raportoima terveyteen liittyvä elämänlaatu verrattain oli hyvä verrattuna ikä-, sukupuoli- ja koulutusvakioituun normaali väestöön lukuun ottamatta palliatiivisen vaiheen potilaita. 15D-mittari antoi kaikissa syövissä ja taudin vaiheissa korkeammat arvot kuin EQ-5D tai VAS. Uupumus, kipu, ikä ja taloudelliset vaikeudet olivat selvästi yhteydessä alentuneeseen elämänlaatuun. Syövästä aiheutuneet kustannukset vaihtelivat merkittävästi taudin vaiheen mukaan (€2106 – €22 200). Kuuden kuukauden jaksolta korkeimmat kustannukset olivat taudin alkuvaiheessa ja ne nousivat jälleen taudin edettyä. Merkittävin osa kustannuksista oli suoria terveydenhuollon kustannuksia. Tuottavuuskustannusten osuus oli merkittävin primaarihoidon vaiheessa (40%). Vastaavasti epävirallisesta hoidosta aiheutuneet kustannukset olivat suurimmat palliatiivisessa hoidon vaiheessa (33%). Avohoidon lääkemenot aiheuttivat potilaiden omavastuutaakasta suurimman osan. Potilaiden maksamat korkeat omavastuut olivat yhteydessä syövästä aiheutuneisiin taloudellisiin vaikeuksiin ja alentuneeseen elämänlaatuun. Johtopäätökset Kaikki tutkimuksessa käytetyt mittarit toimivat tässä potilasjoukossa, vaikkakin niiden antamat tulokset vaihtelivat merkittävästi keskenään. Kolorektaalisyövän kustannukset aiheutuvat enimmäkseen suorista terveydenhuollon kustannuksista ja ne olivat korkeimmat taudin primaarihoitovaiheessa ja taudin edettyä. Syövästä aiheutuneet talousvaikeudet ovat joillekin potilaille merkittäviä ja yhteydessä alentuneeseen elämänlaatuun. Vaikuttavuutta ja kustannuksia tulisi seurata terveydenhuollon arjessa säännönmukaisesti, jotta rajalliset resurssit voidaan kohdentaa mahdollisimman tehokkaasti potilaiden hyvinvoinnin maksimoimiseksi

Hospital Car Parking: The Impact of Access Costs

NHS Trusts have statutory powers to raise income, which allow them to decide whether to charge, and how much to charge, for hospital car parking. Trusts are not obliged to provide parking facilities on their premises, but provision will inevitably incur costs in the form of maintenance, security and staffing. If Trusts choose not to charge for parking, then these costs must be covered from other sources of revenue, potentially diverting resources from patient care. Charges typically account for around 0.25% of a hospital?s income, but can be as high as 1%. The government offers financial support to people on low incomes who incur travel expenses when accessing health care.

Establishing the effectiveness of patient decision aids: key constructs and measurement instruments

Background: Establishing the effectiveness of patient decision aids (PtDA) requires evidence that PtDAs improve the quality of the decision-making process and the quality of the choice made, or decision quality. The aim of this paper is to review the theoretical and empirical evidence for PtDA effectiveness and discuss emerging practical and research issues in the measurement of effectiveness. Methods: This updated overview incorporates: a) an examination of the instruments used to measure five key decision-making process constructs (i.e., recognize decision, feel informed about options and outcomes, feel clear about goals and preferences, discuss goals and preferences with health care provider, and be involved in decisions) and decision quality constructs (i.e., knowledge, realistic expectations, values-choice agreement) within the 86 trials in the Cochrane review; and b) a summary of the 2011 Cochrane Collaboration’s review of PtDAs for these key constructs. Data on the constructs and instruments used were extracted independently by two authors from the 86 trials and any disagreements were resolved by discussion, with adjudication by a third party where required. Results: The 86 studies provide considerable evidence that PtDAs improve the decision-making process and decision quality. A majority of the studies (76/86; 88%) measured at least one of the key decision-making process or decision quality constructs. Seventeen different measurement instruments were used to measure decision-making process constructs, but no single instrument covered all five constructs. The Decisional Conflict Scale was most commonly used (n = 47), followed by the Control Preference Scale (n = 9). Many studies reported one or more constructs of decision quality, including knowledge (n = 59), realistic expectation of risks and benefits (n = 21), and values-choice agreement (n = 13). There was considerable variability in how values-choice agreement was defined and determined. No study reported on all key decision-making process and decision quality constructs. Conclusions: Evidence of PtDA effectiveness in improving the quality of the decision-making process and decision quality is strong and growing. There is not, however, consensus or standardization of measurement for either the decision-making process or decision quality. Additional work is needed to develop and evaluate measurement instruments and further explore theoretical issues to advance future research on PtDA effectiveness

Matters of Trust: Examination of the Patient-Provider Relationship in Cancer Care

Background: The intangible concept of trust is critical in the patient-provider relationship. Cancer patients may experience positive and negative impacts of trust in this relationship to a higher degree due to the inherently serious nature of their disease and the level of dependence upon treatment providers. Objective: The goal of this study was to compare colorectal cancer patients’ levels of trust in their primary care physician and oncologist, along with examining trust differences associated with demographics and other characteristics. Methods: Colorectal cancer patients (n=158) treated at Nebraska Medicine and consented into the Integrated Cancer Repository for Cancer Research IRB 253-13-EP (iCaRe2) database were surveyed. The TiOS instrument measures five domains of trust using a 5-point Likert scale. Possible rural and urban differences, as well as other data characteristic patterns, were examined using descriptive statistics, frequency analysis, and t-tests. Results: There was a measurable difference observed between oncologist and primary care provider (PCP) trust levels for all domains (except Competence), with trust in the oncologist reported higher. The overall Global domain measured a higher level of patient trust in the oncologist (3.65) compared to the PCP (2.96) with a P-value of 0.003. Due to the small sample size, statistical tests were not conducted comparing mean trust between oncologist and PCP within the sociodemographic and geographic variables. Conclusion: The higher levels of trust reported for four out of five domains suggest that cancer patients feel more trust toward their oncologist than toward their PCP. The difference in trust in the Global domain suggests that cancer patients feel a deeper trust in their oncologist that includes aspects of Fidelity, Honesty, and Caring. Future studies should seek to further understand the impact of trust in the patient-provider relationship as well as the factors that influence trust. The findings from this study contribute to the current knowledge of patient-provider trust in the cancer patient population and provide valuable information for future studies

Racial and Ethnic Disparities in Access to and Quality of Health Care

Reviews research on racial and ethnic disparities in health care access and quality and analyzes findings on the extent to which disparities can be attributed to factors other than race/ethnicity, such as insurance, socioeconomic status, and language