Patient involvement in the development of patient-reported outcome measures: A scoping review.

Background Patient-reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria Studies were included if they described a new PROM development. Data extraction Basic information and information regarding patient involvement in development phases was recorded. Main results A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions Although patient involvement in PROM development is essential to develop valid patient-centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary

Рациональный компромисс целей субъектов дистанционного образования

На базе системной методологии исследованы механизмы согласования деятельности субъектов в дистанционном образовании для нахождения рационального компромисса целей субъектов обучения, учебных заведений и агентов рынка труда. На схемах взаимосвязей компонентов системы образования в процессе обучения и на схеме взаимодействия учебных заведений проиллюстрированы преимущества такого подхода. Предложена математическая постановка задачи обеспечения рационального компромисса целей. Разработан алгоритм ее решения.На основі системної методології досліджено механізми погодження діяльності суб’єктів у дистанційній освіті з метою знаходження раціонального компромісу цілей суб’єктів навчання, навчальних закладів та агентів ринку праці. На схемах взаємозв’язків компонентів системи освіти у процесі навчання та на схемі взаємодії навчальних закладів проілюстровано переваги такого підходу. Запропоновано математичну модель задачі знаходження раціонального компромісу цілей та наведено алгоритм її розв’язку.Coordination mechanisms for agents purposes in the distance education have been studied on the basis of system methodology. The finding of rational compromise for purposes of learners, educational institutions and labour market agents is proposed. Benefits of the approach are illustrated by the scheme of education system components interconnection during the learning process and the scheme of educational institutions interaction. A mathematical model and an algorithm for finding the rational compromise of purposes are given

Patient involvement in the development of patient-reported outcome measures:The developers’ perspective

Patient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient’s perspective, patient involvement in PROM development is needed. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are. PROM developers who, according to an earlier scoping review, involved patients in at least two phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded, transcribed and analysed using a general inductive approach. From the PROM developers who involved patients, 21 developers were interviewed and three answered questions via e-mail. Most developers considered patient involvement necessary to create a valid questionnaire and relied on guidelines, personal experience and practical considerations for choosing a qualitative method. Negative aspects of patient involvement were mainly time investment and budget impact. One developer who did not involve patients was interviewed. Two developers sent back answers via e-mail. These developers did not involve patients because of limited resources or because no benefits were expected. Although PROM developers agree that patient involvement is necessary, a lack of resources can be a stumbling block. Most developers rely on guidelines, personal experience or practical considerations for choosing a qualitative method. Although this may be a good place to start, to optimize patient involvement developers should explicitly think about which methods would suit their study. Keywords: Patient-reported outcome measures, Patient participation, Questionnaire development procedures, Qualitative researc

Why patients may not exercise their choice when referred for hospital care:An exploratory study based on interviews with patients

Background Various north-western European health-care systems encourage patients to make an active choice of health-care provider. This study explores, qualitatively, patients' hospital selection processes and provides insight into the reasons why patients do or do not make active choices. Methods Semi-structured individual interviews were conducted with 142 patients in two departments of three Dutch hospitals. Interviews were recorded, transcribed and analysed in accordance with the grounded theory approach. Results Three levels of choice activation were identified – passive, semi-active and active. The majority of the patients, however, visited the default hospital without having used quality information or considered alternatives. Various factors relating to patient, provider and health-care system characteristics were identified that influenced patients' level of choice activation. On the whole, the patients interviewed could be classified into five types with regard to how they chose, or ‘ended up at’ a hospital. These types varied from patients who did not have a choice to patients who made an active choice. Conclusions A large variation exists in the way patients choose a hospital. However, most patients tend to visit the default without being concerned about choice. Generally, they do not see any reason to choose another hospital. In addition, barriers exist to making choices. The idea of a patient who actively makes a choice originates from neoclassical microeconomic theory. However, policy makers may try in vain to bring principles originating from this theory into health care. Even so, patients do value the opportunity of attending ‘their’ own hospital

Overall scores as an alternative to global ratings in patient experience surveys:A comparison of four methods

Background: Global ratings of healthcare by patients are a popular way of summarizing patients' experiences. Summary scores can be used for comparing healthcare provider performance and provider rankings. As an alternative, overall scores from actual patient experiences can be constructed as summary scores. This paper addresses the statistical and practical characteristics of overall scores as an alternative to a global rating in summarizing patient survey results. Methods: Data from a 2010 patient experience survey for approximately 12,000 nursing home residents (7.5% of all Dutch nursing home residents at the time) from 464 nursing homes in the Netherlands (25% of the Dutch nursing homes) was used. Data was collected through specifically designed standardized interview surveys. The respondents' scores for 15 established quality indicators (or composites) for nursing home care were used to calculate overall scores for each nursing home, using four different strategies. The characteristics of the overall scores were compared against each other and with the respondents' global rating. Results: The individual indicators showed stronger associations with each of the four overall strategies than with the global ratings. Furthermore, the dispersion of the overall scores across nursing homes was greater. Differences between overall scores appeared limited. Conclusions: Overall scores proved more valid than global ratings as a summary of the indicator scores, and also showed more pronounced differences between nursing homes. Because of the limited statistical differences between the strategies, and for practical reasons, a straightforward averaging of quality indicator scores may be preferred as an overall score. (aut.ref.

A nationwide survey of patient problem occurrence across different nursing healthcare sectors

Aim: The aim of this study was to determine the patient problems that nurses encounter in different clinical settings and the extent to which they report being able to influence those patient problems. Design: Exploratory online survey research. Method Data were collected through an online questionnaire. We prepared a 2 × 2 matrix to compare the rate of occurrence against the average level of reported influence. Descriptive statistics were used for the data analysis. Results: A total of 440 nurses working in different settings completed the questionnaire. Nurses report having the most influence on patient problems related to self-care, mobility and functions of the skin. Nurses experience less influence on problems with voice/speech and the tasks required for participation in work/employment

The development of a nursing subset of patient problems to support interoperability

Since the emergence of electronic health records, nursing information is increasingly being recorded and stored digitally. Several studies have shown that a wide range of nursing information is not interoperable and cannot be re-used in different health contexts. Difficulties arise when nurses share information with others involved in the delivery of nursing care. The aim of this study is to develop a nursing subset of patient problems that are prevalent in nursing practice, based on the SNOMED CT terminology to assist in the exchange and comparability of nursing information. Explorative qualitative focus groups were used to collect data. Mixed focus groups were defined. Additionally, a nursing researcher and a nursing expert with knowledge of terminologies and a terminologist participated in each focus group. The participants, who work in a range of practical contexts, discussed and reviewed patient problems from various perspectives. Sixty-seven participants divided over seven focus groups selected and defined 119 patient problems. Each patient problem could be documented and coded with a current status or an at-risk status. Sixty-six percent of the patient problems included are covered by the definitions established by the International Classification of Nursing Practice, the reference terminology for nursing practice. For the remainder, definitions from either an official national guideline or a classification were used. Each of the 119 patient problems has a unique SNOMED CT identifier. To support the interoperability of nursing information, a national nursing subset of patient problems based on a terminology (SNOMED CT) has been developed. Using unambiguously defined patient problems is beneficial for clinical nursing practice, because nurses can then compare and exchange information from different settings. A key strength of this study is that nurses were extensively involved in the development process. Further research is required to link or associate nursing patient problems to concepts from a nursing classification with the same meaning

70-luvun vanhusten asuintalon purkuanalyysi

Raportissa esitetään pääpirteittään Lahden vanhusten asuntosäätiön Onnelanpolku-hankkeessa tehty vanhojen asuintalojen purkaminen uudisrakentamisen tieltä sekä purkamisessa huomioonotettavat seikat. Raportissa käydään läpi myös eri rakennusjätejakeita koskevat säädökset, varsinaisia purkutöitä koskevat säädökset ja  kaupungin järjestyssäännöt. Purkutyön kulku alkaa hankesuunnittelusta ja etenee rakennesuunnitteluun ja työvaihesuunnitteluun. Keskeisiä toimijoita ovat rakennuttaja, rakenne- ja purkusuunnittelija, päätoteuttaja ja urakoitsija tai urakoitsijat.  Selvityksessä esitellään eri toimijoiden välinen työn- ja vastuunjako