Protocol for a systematic review of preference-based instruments for measuring care-related outcomes and their suitability for the palliative care setting

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/ INTRODUCTION: Despite informal caregivers' integral role in supporting people affected by disease or disability, economic evaluations often ignore the costs and benefits experienced by this group, especially in the palliative setting. The purpose of this systematic review is to identify preference-based instruments for measuring care-related outcomes and provide guidance on the selection of instrument in palliative care economic evaluations.METHODS AND ANALYSIS: A comprehensive search of the literature will be conducted from database inception (ASSIA; CINAHL; Cochrane library including DARE, NHS EED, HTA; Econlit; Embase; PsychINFO; PubMed). Published peer-reviewed, English-language articles reporting preference-based instruments for measuring care-related outcomes in any clinical area will be included. One researcher will complete the searches and screen the results for potentially eligible studies. A randomly selected subset of 10% citations will be independently screened by two researchers. Any disagreement will be resolved by consensus among the research team. Subsequently, a supplementary search will identify studies detailing the development, valuation, validation and application of the identified instruments. The degree of suitability of the instruments for palliative economic evaluations will be assessed using criteria in the International Society for Quality of Life Research minimum standards for patient-reported outcome measures, the checklist for reporting valuation studies of multiattribute utility-based instruments and information on the development of the instrument in the palliative setting. A narrative summary of the included studies and instruments will be provided; similarities and differences will be described and possible reasons for variations explored. Recommendations for practice on selection of instruments in palliative care economic analyses will be provided.ETHICS AND DISSEMINATION: This is a planned systematic review of published literature. Therefore, ethics approval to conduct this research is not required. Findings will be presented at leading palliative care and health economic conferences and published in a peer-reviewed journal.TRIAL REGISTRATION NUMBER: CRD42016034188

Thermal bremsstrahlung probing the thermodynamical state of multifragmenting systems

Inclusive and exclusive hard-photon (E$_\gamma >$ 30 MeV) production in five different heavy-ion reactions ($^{36}$Ar+$^{197}$Au, $^{107}$Ag, $^{58}$Ni, $^{12}$C at 60{\it A} MeV and $^{129}$Xe+$^{120}$Sn at 50{\it A} MeV) has been studied coupling the TAPS photon spectrometer with several charged-particle multidetectors covering more than 80% of 4$\pi$. The measured spectra, slope parameters and source velocities as well as their target-dependence, confirm the existence of thermal bremsstrahlung emission from secondary nucleon-nucleon collisions that accounts for roughly 20% of the total hard-photon yield. The thermal slopes are a direct measure of the temperature of the excited nuclear systems produced during the reaction.Comment: 4 pages, 3 figures, Proceedings CRIS 2000, 3rd Catania Relativistic Ion Studies, "Phase Transitions in Strong Interactions: Status and Perspectives", Acicastello, Italy, May 22-26, 2000 (to be published in Nuc. Phys. A

Hard photon and neutral pion production in cold nuclear matter

The production of hard photons and neutral pions in 190 MeV proton induced reactions on C, Ca, Ni, and W targets has been for the first time concurrently studied. Angular distributions and energy spectra up to the kinematical limit are discussed and the production cross-sections are presented. From the target mass dependence of the cross-sections the propagation of pions through nuclear matter is analyzed and the production mechanisms of hard photons and primordial pions are derived. It is found that the production of subthreshold particles proceeds mainly through first chance nucleon-nucleon collisions. For the most energetic particles the mass scaling evidences the effect of multiple collisions.Comment: submitted to Phys. Lett.

Evidence for Thermal Equilibration in Multifragmentation Reactions probed with Bremsstrahlung Photons

The production of nuclear bremsstrahlung photons (E$_{\gamma}>$ 30 MeV) has been studied in inclusive and exclusive measurements in four heavy-ion reactions at 60{\it A} MeV. The measured photon spectra, angular distributions and multiplicities indicate that a significant part of the hard-photons are emitted in secondary nucleon-nucleon collisions from a thermally equilibrated system. The observation of the thermal component in multi-fragment $^{36}$Ar+$^{197}$Au reactions suggests that the breakup of the thermalized source produced in this system occurs on a rather long time-scale.Comment: Revised version, accepted for publication in Physical Review Letters. 4 pages, 4 fig

Suppression of soft nuclear bremsstrahlung in proton-nucleus collisions

Photon energy spectra up to the kinematic limit have been measured in 190 MeV proton reactions with light and heavy nuclei to investigate the influence of the multiple-scattering process on the photon production. Relative to the predictions of models based on a quasi-free production mechanism a strong suppression of bremsstrahlung is observed in the low-energy region of the photon spectrum. We attribute this effect to the interference of photon amplitudes due to multiple scattering of nucleons in the nuclear medium.Comment: 12 pages, 3 figures, submitted to Phys. Rev. Let

Proton-deuteron radiative capture cross sections at intermediate energies

Differential cross sections of the reaction $p(d,^3{\rm He})\gamma$ have been measured at deuteron laboratory energies of 110, 133 and 180 MeV. The data were obtained with a coincidence setup measuring both the outgoing $^3$He and the photon. The data are compared with modern calculations including all possible meson-exchange currents and two- and three- nucleon forces in the potential. The data clearly show a preference for one of the models, although the shape of the angular distribution cannot be reproduced by any of the presented models.Comment: 6 pages, 6 figures, accepted for publication in EPJ

Family coordination in families who have a child with autism spectrum disorder

Little is known about the interactions of families where there is a child with autism spectrum disorder (ASD). The present study applies the Lausanne Trilogue Play (LTP) to explore both its applicability to this population as well as to assess resources and areas of deficit in these families. The sample consisted of 68 families with a child with ASD, and 43 families with a typically developing (TD) child. With respect to the global score for family coordination there were several negative correlations: the more severe the symptoms (based on the child’s ADOS score), the more family coordination was dysfunctional. This correlation was particularly high when parents had to play together with the child. In the parts in which only one of the parents played actively with the child, while the other was simply present, some families did achieve scores in the functional range, despite the child’s symptom severity. The outcomes are discussed in terms of their clinical implications both for assessment and for interventio

Photon Production in Heavy-ion Collisions Close to the Pion Threshold

We report on a measurement of hard photons (Eg>30 MeV) in the reaction Ar+Ca at 180A MeV at an energy in which photons from the decay of pi0 mesons are dominating. Simultaneous measurement with the TAPS spectrometer of the photon spectrum and photon-photon coincidences used for the identification of pi0 enabled the subtraction of pi0 contribution. The resulting photon spectrum exhibits an exponential shape with an inverse slope of E0=(53+-0.03(stat)-5+8(syst)) MeV. The photon multiplicity, equal to (1.21+-0.03(stat)+0.3-0.2(syst))10E0-2, is roughly one order of magnitude larger than the value extrapolated from existing systematics. This enhancement of the hard photon production is attributed to a strong increase in the contribution of secondary np collisions to the total photon yield. We conclude that, on average, the number of np collisions which contribute to the hard photon production is 7 times larger than the number of first chance np collisions in the reaction Ar+Ca at 180A MeV.Comment: 15 pages, 4 figures, references adde

Data and Image Transfer Using Mobile Phones to Strengthen Microscopy-Based Diagnostic Services in Low and Middle Income Country Laboratories

Background: The emerging market of mobile phone technology and its use in the health sector is rapidly expanding and connecting even the most remote areas of world. Distributing diagnostic images over the mobile network for knowledge sharing, feedback or quality control is a logical innovation. Objective: To determine the feasibility of using mobile phones for capturing microscopy images and transferring these to a central database for assessment, feedback and educational purposes. Methods: A feasibility study was carried out in Uganda. Images of microscopy samples were taken using a prototype connector that could fix a variety of mobile phones to a microscope. An Information Technology (IT) platform was set up for data transfer from a mobile phone to a website, including feedback by text messaging to the end user. Results: Clear images were captured using mobile phone cameras of 2 megapixels (MP) up to 5MP. Images were sent by mobile Internet to a website where they were visualized and feedback could be provided to the sender by means of text message. Conclusion: The process of capturing microscopy images on mobile phones, relaying them to a central review website and feeding back to the sender is feasible and of potential benefit in resource poor settings. Even though the system needs furthe

A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving

Purpose: Most economic evaluations of health care programmes do not consider the effects of informal care, while this could lead to suboptimal policy decisions. This study investigates the construct validity of the CarerQol instrument, which measures and values carer effects, in a new population of informal caregivers. Methods: A questionnaire was distributed by mail (n = 1,100, net response rate = 21%) to regional informal care support centers throughout the Netherlands. Two types of construct validity, i.e., convergent and clinical validity, have been analyzed. Convergent validity was assessed with Spearman's correlation coefficients and multivariate correlation between the burden dimensions (CarerQol-7D) and the valuation component (CarerQol-VAS) of the CarerQol. Additionally, convergent validity was analyzed with Spearman's correlation coefficients between the CarerQol and other measures of subjective caregiver burden (SRB, PU). Clinical validity was evaluated with multivariate correlation between CarerQol-VAS and CarerQol-7D, characteristics of caregivers, care recipients and care situation among the whole sample of caregivers and subgroups. Results: The positive (negative) dimensions of CarerQol-7D were positively (negatively) related to CarerQol-VAS, and almost all had moderate strength of convergent validity. CarerQol-VAS was positively associated with PU and negatively with SRB. The CarerQol-VAS reflects differences in important background characteristics of informal care: type of relationship, age of the care recipient and duration of care giving were associated with higher CarerQol-VAS scores. These results confirmed earlier tests of the construct validity of the CarerQol. Furthermore, the dimensions of CarerQol-7D significantly explained differences in CarerQol-VAS scores among subgroups of carers. Conclusion: Notwithstanding the limitations of our study, such as the low response rate, this study shows that the CarerQol provides a valid means to measure carer effects for use in economic evaluations. Future research should derive a valuation set for the CarerQol and further address the instrument's content validity, sensitivity and reliability