Myra van Zwieten

Work participation and arthritis: a systematic overview of challenges, adaptations and opportunities for interventions

OBJECTIVE Understanding the factors that play a role in maintaining people with inflammatory arthritis in the workforce may aid the design of interventions to support work participation. The objective of this systematic overview is to summarize qualitative studies that explore experiences of patients with inflammatory arthritis to remain employed or return to work. METHODS Bibliographic databases including MEDLINE, EMBASE and PsycInfo were searched until December 2011 to identify any qualitative studies that focused on experiences, challenges or adaptations of patients with inflammatory arthritis to remain employed. Thematic analyses were used to identify any first or higher order themes for which all data were entered into MAXQDA software. In addition, methodological quality was assessed using an eight-item checklist. RESULTS Of 6338 citations, 10 studies were included. RA was the condition in eight studies. Individual interviews (six studies) were used more frequently than group interviews (four studies). Methodological quality varied from 2 to 8 points and had no effect on the number of themes identified. Thematic analyses showed seven key concepts important to patients, including disease symptoms, management of the disease, socioeconomic issues, work conditions and adaptations, emotional challenges, interpersonal issues affecting work and family life and meaning of work. CONCLUSION By including studies from different countries and settings, we show a comprehensive overview of themes considered important by patients and strengthen our belief that these factors should be considered in interventions that aim to improve work participation for patients with inflammatory arthritis.

The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer

This study investigates the effect of using patient reported outcomes (PROs) about health‐related quality of life (HRQOL) in clinical practice on the type and amount of psychosocial topics discussed during a paediatric oncology consultation.

Experiences of parents and patients with the timing of Mucopolysaccharidosis type I (MPS I) diagnoses and its relevance to the ethical debate on newborn screening

INTRODUCTION Newborn screening (NBS) techniques have been developed for several lysosomal storage disorders (LSDs), including Mucopolysaccharidosis type I (MPS I). MPS I is an LSD with a wide phenotypic spectrum that ranges from the severe Hurler phenotype to the attenuated Scheie phenotype. To improve the ethical discussion about NBS for MPS I, we performed an interview study to explore the experiences of MPS I patients and their parents with the timings of their diagnoses. METHODS We used a qualitative research approach consisting of 17 interviews with the parents of patients with all MPS I phenotypes and with patients with attenuated forms of MPS I. The interviews were audio-recorded, transcribed and subsequently analyzed to identify the main themes identified by the participants. RESULTS Five important themes, focusing on the experienced disadvantages of delayed diagnosis and the advantages and disadvantages of a hypothetical earlier diagnosis, were identified in our group of participants: 1) delayed diagnosis causing parental frustration, 2) delayed diagnosis causing patient frustration, 3) early diagnosis enabling reproductive decision-making, 4) early diagnosis enabling focusing on the diagnosis, and 5) early diagnosis enabling timely initiation of treatment. There was a remarkable similarity in the experiences with timing of diagnosis between parents of patients with the severe and the attenuated forms. CONCLUSION This was the first study to explore the personal experiences of MPS I patients and their parents with diagnostic timing. Our study identified five important themes that are highly relevant to the ethical discussion on expanding NBS programs for MPS I.

Waardering van kwalitatief onderzoek

SamenvattingWie een wetenschappelijk artikel leest, wil weten of hij kan bouwen op de resultaten daarvan, met andere woorden, of het onderzoek waarover verslag wordt gedaan methodologisch goed in elkaar zit. Daarbij zal de lezer uitgaan van het algemene idee dat een goede methode leidt tot objectieve conclusies. Maar wat is objectief? Betekent dit dat elke onderzoeker in principe dezelfde resultaten zou moeten verkrijgen? Moet het onderzoek volgens vaste protocollen zijn verlopen? En mag de onderzoeker geen enkele bias vertonen? Oftewel, zou de rol van de onderzoeker eigenlijk moeten zijn geminimaliseerd en zou de objectiviteit nog het beste door de uitvoering met een computer zijn gegarandeerd? In dat geval zou kwalitatief onderzoek nooit objectief – in de zin van methodologisch deugdelijk – kunnen zijn.

Patients׳ perspectives on how treatment can impede their recovery from depression.

BACKGROUND More than 50% of all major depressive disorder (MDD) patients experience insufficient improvement from the available treatment options. There is emerging evidence that patients׳ beliefs and experiences about MDD treatment influence treatment outcomes. The aim was to explore patients׳ perspectives on impeding characteristics of professional treatment for the recovery of MDD. METHODS In-depth interviews in a purposive sample with 27 recovered MDD patients who had received professional treatment. Data were qualitatively analyzed using constant comparison. RESULTS Participants׳ accounts yielded four major impeding themes: lack of clarity and consensus about the nature of the participants׳ MDD and the content of their treatment; precarious relationship with the clinician; unavailability of mental health care; and insufficient involvement of significant others. LIMITATIONS The external generalizability may be limited due to missed other subgroups within depression. CONCLUSIONS This study identified a comprehensive overview of impeding characteristics in MDD treatment from patients׳ perspectives. This may help clinicians to understand how patients experience MDD treatment, and to incorporate patients׳ perspectives about treatment into their joint decision-making. This can lead towards increased treatment adherence, motivation and finally success.

Ethical review from the inside: repertoires of evaluation in Research Ethics Committee meetings

Evaluating the practice of ethical review by Research Ethics Committees (REC) could help protect the interests of human participants and promote scientific progress. To facilitate such evaluations, we conducted an ethnographic study of how an REC reviews research proposals during its meetings. We observed 13 meetings of a Dutch REC and studied REC documents. We coded this material inductively and categorised these codes in two repertoires of evaluation: a repertoire of rules and a repertoire of production. In the repertoire of rules the REC applies rules, weighs scientific value and burdens to the participants and makes a final judgment on a research proposal in a meeting. In the repertoire of production, REC members check documents and forms and advise researchers on how to improve their proposals and can use informal communication. Based on these findings, we think that evaluations of the practice of ethical review should take into account the fact that RECs can use a repertoire of rules and a repertoire of production to evaluate research proposals. Combining these two repertoires can be a viable option so that the REC gives researchers advice on how to improve their proposals to prevent rejection of valuable research.

Wat denken gescreende patiënten met een depressie over hun diagnose

SamenvattingWittkampf KA, Van Zwieten M, Smits FT, Schene AH, Huyser J, Van Weert HC. Wat denken gescreende patiënten met een depressie over hun diagnose? Huisarts Wet 2009;52(6):274-80.Achtergrond Patiënten hebben soms moeite met het accepteren van de diagnose depressieve stoornis. Wij wilden weten hoe patiënten reageren als de huisarts met een sceeningsprogramma actief op zoek gaat naar eventuele symptomen en zij vervolgens te horen krijgen dat zij een depressieve stoornis hebben.Methode Wij namen bij zeventien patiënten, bij wie in het kader van een screeningsprogramma de diagnose depressieve stoornis was gesteld, een halfgestructureerd diepte-interview af.Resultaten Alle zeventien patiënten waardeerden de actieve benadering en vijftien van hen bevestigden dat zij depressieve klachten hadden. Negen patiënten herkenden zich echter niet in de diagnose depressieve stoornis, voor een deel omdat zij het stigma vreesden en het nut van het labelen niet inzagen, maar ook omdat het volgens hen om een normale reactie op een negatieve gebeurtenis ging en een behandeling toch niet zou werken.Conclusies Een aantal patiënten waardeert het als men hun actief naar eventuele depressieve klachten vraagt. Een groot deel van hen herkent zich vervolgens echter niet in de diagnose depressieve stoornis. Wij adviseren huisartsen die overwegen te screenen op depressie om de visie van de patiënt te exploreren alvorens de diagnose te stellen en een behandeling aan te bieden.

Research monitoring by US medical institutions to protect human subjects: compliance or quality improvement?

In recent years, to protect the rights and welfare of human subjects, institutions in the USA have begun to set up programmes to monitor ongoing medical research. These programmes provide routine, onsite oversight, and thus go beyond existing oversight such as investigating suspected misconduct or reviewing paperwork provided by investigators. However, because of a lack of guidelines and evidence, institutions have had little guidance in setting up their programmes. To help institutions make the right choices, we used interviews and document analysis to study how and why 11 US institutions have set up their monitoring programmes. Although these programmes varied considerably, we were able to distinguish two general types. ‘Compliance’ programmes on the one hand were part of the institutional review board office and set up to ensure compliance with regulations. Investigators’ participation was mandatory. Monitors focused on documentation. Investigators could be disciplined, and could be obliged to take corrective actions. ‘Quality-improvement’ programmes on the other hand were part of a separate office. Investigators requested to be monitored. Monitors focused more on actual research conduct. Investigators and other parties received feedback on how to improve the research process. Although both types of programmes have their drawbacks and advantages, we argue that if institutions want to set up monitoring programmes, quality improvement is the better choice: it can help foster an atmosphere of trust between investigators and the institutional review board, and can help raise the standards for the protection of human subjects.

De toekomst van snelle prenatale diagnostiek: globaal of gericht testen?

SamenvattingVan Zwieten M. De toekomst van snelle prenatale diagnostiek: globaal of gericht testen? Huisarts Wet 2007;50(13):682-5.In de prenatale diagnostiek gebruikt men steeds vaker moleculaire diagnostische technieken omdat de uitslag daarmee sneller beschikbaar is dan bij de gebruikelijke chromosoomanalyse. Snelle moleculaire tests zijn bijvoorbeeld kwantitatieve polymerase kettingreactie (QF-PCR) en multipele ligatie-afhankelijke probe-amplificatie (MLPA). Artsen combineren deze tests nog altijd met de conventionele volledige karyotypering. De belangrijkste reden hiervoor is dat het volledige chromosoomonderzoek, in tegenstelling tot de moleculaire technieken, ook afwijkingen kan aantonen waarnaar men niet speciaal zoekt.Er gaan steeds meer stemmen op om de volledige karyotypering te vervangen door de meer gerichte tests met moleculaire technieken. Dit zou met name gelden voor de grote groep zwangere vrouwen die een verhoogde kans hebben op trisomie 21 (downsyndroom), vanwege hun leeftijd of op grond van screening. Bij deze vrouwen zou men kunnen volstaan met gericht zoeken naar trisomie 21, 18 en 13 en mogelijk naar afwijkingen aan de geslachtschromosomen. Overige structurele afwijkingen, zoals translocaties, zouden in deze nieuwe testvorm zeker buiten beeld blijven.In dit artikel bespreek ik de belangrijkste argumenten voor en tegen deze vorm van targeted testing. Feitelijk draait het om de vraag welk doel prenatale diagnostiek precies heeft, waardoor de discussie een duidelijk ethische lading krijgt. Ik introduceer een definitie van prenatale diagnostiek die deze discussie mogelijk maakt. Ten slotte onderstreep ik het belang van een actieve bijdrage van zorgverleners, inclusief huisartsen, aan de discussie over de vraag hoe de prenatale diagnostiek er in de (nabije) toekomst uit zou moeten zien.AbstractVan Zwieten M. The future of rapid prenatal diagnostics: global or targeted testing. Huisarts Wet 2007;50(13):682-5.In prenatal diagnosis molecular diagnostic tests are increasingly used to achieve testing results more rapidly compared to conventional chromosome analysis. Up to now rapid molecular tests such as quantitative polymerase chain reaction (QF-PCR) and multiple ligation dependent probe amplification (MLPA) are not yet being used in a stand-alone scenario but are combined with the conventional method of full karyotyping. This is mainly because, contrary to the molecular tests, full karyotyping also detects abnormalities not being specifically sought for.There is increasing support being voiced for the replacement of full karyotyping by using the molecular tests for a more targeted way of testing. This kind of testing could be applied to the majority of women undergoing prenatal diagnosis because of an increased risk of Down’s syndrome due to their age or their high risk determined in a prenatal screening programme. Prenatal diagnosis for these women could be restricted to trisomy 21, 18 and 13. Detection of sex chromosome abnormalities might be an option, but other structural abnormalities such as translocations would definitely not be detected in the new scenario.This paper presents the main arguments for and against the so-called scenario of ‘targeted testing’. It is concluded that the core of the discussion focuses on the question of what actually is the objective of prenatal diagnosis, which adds a clear ethical aspect to the discussion. This paper introduces a definition of prenatal diagnosis to facilitate the discussion. Finally, this paper explicitly calls on prenatal diagnosis providers, as well as GPs, to consider their professional responsibility and actively participate in the discussion on the future practice of prenatal diagnosis.