Well-being and headache in adolescence : A self-regulation perspective

What kinds of personal goals, aspirations and plans do Dutch youths consider important in their lives? And how does experience of setbacks when pursuing these goals and means of coping with these frustrations influence their psychological well-being and experience of headache? These are some of the main questions addressed in this research project by means of a series of questionnaire and diary studies among high-school students. Goals were most commonly reported in the area of interpersonal relationships, followed by health and body, their future, school, leisure and personal development. Importance of adolescent aspirations and thoughts and emotions related to these goals were shaped to a large extent by personal and contextual characteristics such as gender, age and ethnicity. Goal importance did not differ according to experience of headache, however, youths with weekly headache reported higher levels of frustration in personal goal pursuits compared to their headache-free peers. Frustration in pursuit of especially self and health goals was related to higher depressive symptoms and lower quality of life in a cross-sectional questionnaire study. Furthermore, frustration predicted next-day lower well-being and greater headache complaints in a prospective diary study. Moreover, dwelling on the negative aspects of the situation (catastrophizing), repetitive thoughts about the frustration (rumination) and the belief that one is unable to cope well with the setback predicted next-day poorer psychological well-being. This was one of the first studies to assess the contribution of self and emotion regulation factors to well-being and headache in adolescence and offers insights into possible targets for intervention with youthsLEI Universiteit LeidenFSW - Self-regulation models for health behavior and Psychopathology - Ou

Self-generated goals and goal process appraisals: Relationships with sociodemographic factors and well-being.

FSW - Self-regulation models for health behavior and Psychopathology - Ou

Goal frustration, coping and well-being in the context of adolescent headache: A self-regulation approach.

FSW - Self-regulation models for health behavior and Psychopathology - Ou

Living kidney donation among ethnic minorities: A Dutch qualitative study on attitudes, communication, knowledge and needs of kidney patients

Background: Terminal kidney patients are faced with lower quality of life during dialysis treatment, restricted diets and high morbidity and mortality rates while waiting for a deceased donor kidney transplantation. Fortunately, living donor kidney transplantation offers an alternative with considerable advantages in terms of waiting time and graft survival rates. Nevertheless, we observed an inequality in the proportion of living kidney transplantations performed between the non-European patients and the European patients in our centre. To date little is known about the factors contributing towards this racial disparity. Previous research from our centre did not find any medical reasons to explain this racial disparity. We believe that non-medical psychosocial and cultural factors predominantly account for this discrepancy. Purpose Focus group discussions and in-depth interviews were conducted in order to gain insight in the attitudes, (non-)communication and knowledge of our non-European patients (compared to European patients) regarding living donor kidney transplantation (LDKT). Additionally, we investigated their attitudes towards professional support in finding an eligible living donor. Methods: The interviews were held in line with the focus group method and analyzed according to the grounded theory. The interviews were focused on six main topics (kidney transplantation, living kidney donation, communication, information, knowledge and intervention needs). European patients were included as a comparison group. The qualitative data analyses were performed in Atlas.ti. Results:We found nearly all our patient to be in favour of a living kidney transplantation (96%). However multiple prohibiting intertwined factors play a role when actually considering a living donor. We found four major barriers to the living donor transplantation process in our non-European patients: 1) not (so easily) comprehensible non-patient-centered information 2) cognitions and emotions (based on fears, concerns and misconceptions) 3) a state of basically non-communication with the potential donor(s) on this issue (as a consequence of personal and cultural beliefs) 4) and social influences. We also found some similar factors playing a role in the donation course of our European patients without a living donor. Finally, our patients held a welcoming attitude towards an intervention aimed at assisting them getting though the living donation program. Discussion: This study has identified several modifiable determinants underlying racial disparity in our living donor kidney transplantation program and investigated patients’ attitude towards two interventions aimed at alleviating this inequality. We realize that our list of barriers may not be thorough enough and surely more is to be said on this topic, the findings offer possible targets for intervention. In accordance with our patients’ preference, we argue that a home-based educatio

Daily frustration, cognitive coping and coping effecacy in adolescent headache: A daily diary study.

Multivariate analysis of psychological data - ou

Multisystemic engagement & nephrology based educational intervention: A randomized controlled trial protocol on the kidney team at home-study

Background: Living donor kidney transplantation (LDKT) is the most successful form of renal replacement therapy in terms of wait time and survival rates. However, we observed a significant inequality in the number of LDKT performed between the Dutch and the non-Dutch patients. The objective of this study is to adapt, implement and test an educational home-based intervention to contribute to the reduction of this inequality. Our aim is to establish this through guided communication together with the social network of the patients in an attempt that well-informed decisions regarding renal replacement therapy can be made: Multisystemic Engagement & Nephrology. This manuscript is a detailed description of the Kidney Team At Home-study protocol. Methods and design. All patients (>18 yrs) that are referred to the pre-transplantation outpatient clinic are eligible to participate in the study. Patients will be randomly assigned to either an experimental or a control group. The control group will continue to receive standard care. The experimental group will receive standard care plus a home-based educational intervention. The intervention consists of two sessions at the patient's home, an initial session with the patient and a second session for which individuals from their social network are invited to take part. Based on the literature and behavioural change theories we hypothesize that reducing hurdles in knowledge, risk perception, subjective norm, self-efficacy, and communication contribute to well-informed decision making and reducing inequality in accessing LDKT programs. A change in these factors is consequently our primary outcome-measure. Based on power calculations, we aim to include 160 patients over a period of two years. Discussion. If we are able to show that this home-based group educational intervention contributes to 1) achieving well-informed decision regarding treatment and 2) reducing the inequality in LDKT, the quality of life of patients will be improved while healthcare costs are reduced. As the intervention is investigated in a random heterogeneous patient group in daily practice, the transfer to clinical practice in other kidney transplant centers should be relatively easy

Eindrapportage project ‘Nierteam aan Huis’ 2016-2020

Het ‘Nierteam aan Huis’ (NTAH) project is in de periode van 2016-2018 uitgevoerd. NTAH is een voorlichtingsprogramma voor patiënten met terminale nierinsufficiëntie en wordt gegeven bij de patiënten thuis. De patiënt en hun sociale netwerk worden voorgelicht over terminale nierinsufficiëntie en de behandelvormen hiervan door daarin getrainde voorlichters. Dit project toonde aan dat deze unieke vorm van voorlichting in verschillende regio’s in Nederland implementeerbaar is met goede resultaten op effectiviteit en kwaliteit. Bovendien bleek uit onze analyse dat NTAH bijzonder kosteneffectief is. Om deze reden bevelen wij aan om de thuisvoorlichting landelijk in te voeren en financieel mogelijk te maken. ACHTERGROND EN DOEL Het project is gebaseerd op twee voorgaande gecontroleerde studies in de regio Rotterdam. Deze studies leidden tot een betere kennis over behandelmogelijkheden bij patiënten en hun sociale omgeving en tot een betere communicatie. Ook werden meer patiënten getransplanteerd met een nier van een levende donor vergeleken met patiënten die deze thuisvoorlichting niet kregen. In 2016 werd er een plan opgesteld om NTAH in andere regio’s in de praktijk te brengen. In de periode 2016-2018 werd intensief samengewerkt met acht deelnemende ziekenhuizen: AMC, OLVG, Erasmus MC, Maasstad Ziekenhuis, Radboud UMC, Jeroen Bosch Ziekenhuis, UMCG en het ZGT. Het project had als doel (1) om de thuisvoorlichting in andere regio’s dan Rotterdam in praktijk te brengen met behoud van kwaliteit en resultaten en (2) om NTAH in de verzekerbare zorg op te nemen. BEVINDINGEN Het project werd volgens plan uitgevoerd in alle acht ziekenhuizen voor wat betreft het contracteren van de ziekenhuizen, het aanstellen van personeel, het trainen van de voorlichters en het organiseren van intervisie- en supervisiebijeenkomsten. Tussen 2016-2018 werden er 768 patiënten bereikt en 303 voorlichtingen gegeven. Zowel patiënten als hun genodigden voor de thuisvoorlichting ontwikkelden een significante stijging in kennis en communicatie betreffende nierinsufficiëntie en de nierfunctievervangende behandelingen. Van de 303 patiënten die een voorlichting hebben gekregen zijn er 6 patiënten overleden, hebben 37 patiënten een postmortale niertransplantatie ondergaan, werd bij 2 patiënten de behandeling gestopt, was van 10 patiënten nog geen follow-up van minimaal zes maanden beschikbaar en wilden 10 patiënten niet meer meedoen aan het project. Van de overige 238 patiënten kozen 104 (44%) voor een levend donatietraject; inmiddels werden 47 patiënten getransplanteerd met een nier van een levende donor. Daarnaast bleek NTAH bijzonder kosteneffectief te zijn. Voorbereidende stappen, zoals een aanvraag bij NZa en het opnemen van NTAH in de kwaliteitseisen, zijn inmiddels gezet voor structurele financiering per 01-01-2021. CONCLUSIES Dit project werd mogelijk gemaakt door Zorgverzekeraars Nederland (ZN). Dit rapport is samen met de begeleidingscommissie tot stand gekomen. De begeleidingscommissie bestaat uit vertegenwoordigers van Zorgverzekeraars Nederland, de Nierstichting, Nierpatiënten Vereniging Nederland, Nederlandse Federatie voor Nefrologie en de hoogleraar Medische Psychologie van het Erasmus MC. In het rapport wordt een uitgebreid overzicht gegeven van de rationale en de behaalde resultaten van NTAH. Deze resultaten zijn in lijn met de resuHet ‘Nierteam aan Huis’ (NTAH) project is in de periode van 2016-2018 uitgevoerd. NTAH is een voorlichtingsprogramma voor patiënten met terminale nierinsufficiëntie en wordt gegeven bij de patiënten thuis. De patiënt en hun sociale netwerk worden voorgelicht over terminale nierinsufficiëntie en de behandelvormen hiervan door daarin getrainde voorlichters. Dit project toonde aan dat deze unieke vorm van voorlichting in verschillende regio’s in Nederland implementeerbaar is met goede resultaten op effectiviteit en kwaliteit. Bovendien bleek uit onze analyse dat NTAH bijzonder kosteneffectief is. Om deze reden bevelen wij aan om de thuisvoorlichting landelijk in te voeren en financieel mogelijk te maken

Global Kidney Exchange: opportunity or exploitation? An ELPAT/ESOT appraisal

This paper addresses ethical, legal, and psychosocial aspects of Global Kidney Exchange (GKE). Concerns have been raised that GKE violates the nonpayment principle, exploits donors in low- and middle-income countries, and detracts from the aim of self-sufficiency. We review the arguments for and against GKE. We argue that while some concerns about GKE are justified based on the available evidence, others are speculative and do not apply exclusively to GKE but to living donation more generally. We posit that concerns can be mitigated by implementing safeguards, by developing minimum quality criteria and by establishing an international committee that independently monitors and evaluates GKE’s procedures and outcomes. Several questions remain however that warrant further clarificati

Exploring Knowledge About Dialysis, Transplantation, and Living Donation Among Patients and Their Living Kidney Donors

Background: In order to make a well-considered decision and give informed consent about renal replacement therapy, potential living kidney donors and recipients should have sufficient understanding of the options and risks. Purpose: We aimed to explore knowledge about Dialysis & Transplantation (DT) and Living Donation (LD) among prospective living kidney donors and recipients. Methods: Eighty-five donors and 81 recipients completed the Rotterdam Renal Replacement Knowledge-Test (R3K-T) 1 day before surgery. The questionnaire was available in various languages. Results: Recipients knew significantly more about DT than donors (p < 0.001); donors knew more about LD than recipients (p < 0.001). A minority of donors (15 %) and recipients (17 %) had a score that was comparable to the knowledge level of the naïve general population. Recipients and donors knew less about DT and LD if their native language was not Dutch. In addition, recipients knew less about DT if they were undergoing pre-emptive transplantation. Conclusions: We conclude that recipients and donors retain different information. The decision to undergo living donation appears to be not always based on full knowledge of the risks. We recommend that professionals assess knowledge of prospective donors and recipients during the education process using the R3K-T, and extra attention is required for non-native speakers